Life With My X-Men

Working on independence

2012-02-02T15:45:00.001-05:00

Since I am starting to feel more like my normal self, I am able to do more with the boys than just the necessities. I have been wanting to work with them on gaining more independence, especially with self-help skills. They are constantly asking me for snacks or drink refills or whatnot. I bought this refrigerator drink dispenser and filled it with water. I showed the boys how to use it. Blake was thrilled! He loves it and gets refills for his little plastic mug all the time. Drew hasn't used it at all, because he prefers milk. My goal for him is to get another dispenser and fill it will his daily allotment of milk. When he's used it all up, he'll have to switch to water.

Here's Blake using his new water dispenser

Even though Drew won't get his own water, he's been more willing to do things himself. For instance, this morning he wanted toast. I told him he needed to get the bread out. He got it out of the drawer and tossed the bag on the counter and said, "There--get my toast" That sounds pretty rude, but I think he just was telling me that he thought he fulfilled his job, now he wanted me to do mine. Unbeknownst to him, I decided it was his job to make his own toast today. I did open the bag, as he has trouble with the twist-ties. I am changing them over to a clothespin that he can handle. I instructed him to get out two pieces of bread, showed him how to plug in the toaster and he put the bread in and pressed the button down. I buttered his toast today, but I am going to transfer some squeeze margarine into an easy to squeeze bottle like this:

I got that great idea from my friend Cindi, from Mrs. Rogers' Neighborhood. I think the regular squeeze bottles are a little tough for X-men with low muscle tone, and these are nice and squeezy. :)

I also attribute Drew's willingness to try doing new things to his drug trial medicine. For other interested FX parents, he is on 10mg of Arbaclofen 3x per day. We have seen a lot of positive things from him since beginning the open label. There are times when we see his anxiety peek through, but overall we are pleased.

These are just little things and there are thousands more ways they need to learn to take care of themselves, I am excited to see them doing what I have worked on so far. I want them to feel capable of caring for themselves.

That boy!

2012-01-28T11:24:00.001-05:00

Blake came up to me a couple minutes ago and asked me to kiss his owie. I looked at it and it was a scratch that looked at least a day old. I kissed it and he asked for a banaid. I said ok and we went into the bathroom. I put a little Neosporin on it and a bandaid. He thanked me and ran off. Normally he removes his bandaids within three seconds, but this time he left it on. He couldn't stop thinking about it, though. He would try to play with his train, but next thing you know, he'd be holding his injured arm in his "good" arm. He sighed a lot and stopped to look at it. He showed it to me forty-eleven times and asked to take off the bandaid. I looked at him solemnly and said, "You have an owie. You better leave it on." and he went off with more sighing and arm-holding. I know if it had been on his leg, he'd have been limping. lol.

I took this picture of him with his finger covering the bandaid. You can see how distressed he is by it.

While I was typing this, he ripped the bandaid off and said, "Whew! It's all fixed, now!" and is playing happily, putting his bandaid on Thomas.

Blake

2012-01-24T15:01:00.000-05:00

Blake loves trains. He loves Thomas and has two different kinds of Thomas tracks. He has a big train set we got him for Christmas. Yesterday he requested that I put together his Leap Frog Phonics Train. He has been so happy playing with it. We got that thing when Drew was a toddler, so it's definitely gotten good use.

Bonus? He is doing his own OT while playing with it. How's that for strengthening?

And sorry he's in his skivvies for the pic, but that's pretty much what he looks like 90% of the time when we're at home.

A New Day

2012-01-24T08:22:00.000-05:00

Drew had a little anxiety going to bed last night, but not bad. I went in and covered him up several times. He knows how to cover himself up but it is a comfort measure to have your mom cover you up, of course. He fell asleep pretty quickly and woke up happy this morning.

I used to try to get him to put on his backpack while we wait for the them to get picked up. He has always refused and I end up carrying it for him. Today, he just went over and put it on. Like it's something he does everyday. I was so surprised!

He is on 10mg of Arbaclofen again today. I hope it does well for him. He's such a sweet boy. I just want to make his life easier. He has so many challenges and I am impressed with how well he does with them.

Today he said, "Hey Mommy! Guess what?! I love you." What a great way to start out our day.

A rough night for Drewy

2012-01-23T12:27:00.001-05:00

Yes, I still occasionally call my eleven year old Drewy. This weekend has been a little more stressful for him and I am not sure why. His anxiety on Saturday and Sunday has been higher. I recently reported that he was doing well with showers, but Saturday and Sunday he screamed and cried through them.

I, myself have not been sleeping well. I have gastritis now and that makes laying down uncomfortable. Plus my recent weight loss has cause a new,irritating phenomen--my knees clanking together. Ok, so they don't actually clank, but it is not comfortable, either. I don't remember having this problem when I was a skinny kid.

I went to bed at eleven and tossed and turned and got up and took Melatonin and went back to bed to toss and turn some more. At 12:30, I finally fell asleep. At least, that's the last time I remember seeing on the clock.

Ok, so this post is not really about me. Last night, Drew went to bed ok. He got up a couple times to go to the bathroom or to ask to be covered up or whatnot but went to sleep within a half hour or so. At 2:00, Drew started crying and called out for me. I went to see what was wrong and he was sitting on his bed, crying. He asked to go to the bathroom, which he did, but then when I tried to direct him back to his bed, he started crying again saying, "I'm scared!" and asked to watch tv. I told him it was in the middle of the night and we needed to go back to sleep. I offered to lay down with him, to which he replied, "No, it's my bed." He said his nose hurt and his throat hurt and he couldn't go to school tomorrow. He said he needed to stay home with me. He is not sick.

I felt really bad for him because he was obviously upset. And he was communicating with me, which is good. He used to just wake up crying and I don't think I ever heard him say, "I'm scared" before. We went into the toyroom and I put Blue's Clues on for him and sat down next to him. He shooed me off to bed, though because sitting next to him while he watches Blue's Clues is not typical for me. Not the regular morning routine. I told him that when the show was over, he had to go back to bed.

I went back to bed and must have dozed off, because it was three in the moring when he came in my room saying my name. He wanted to watch something else. I told him no, that he had to go back to bed. Well, he didn't like that one bit and started to cry. Well, Eric is usually the one who plays bad cop in our house, so he told Drew to cut it out and go to bed. Drew cried in his bed for 10-15 minutes and fell asleep. It was hard for me not to go back in there, but I knew as soon as I did, he'd be back up again.

He slept until almost 7:30 this morning and looked pretty tired. I increased his dose of his Arbaclofen this morning to 10 mg. I am hoping this will help with his anxiety. Maybe his body was just getting used to the 5mg and decided it wasn't enough to do the trick. I don't know. I hate when parenting is hard!

Friday Fill-ins

2012-01-13T08:30:00.003-05:00

1. How can I be tired when I just got up?!

2. Yesterday, it started to snow. "They" said it was going to be bad. People were getting groceries. But, thankfully it didn't stick on the roads or sidewalks. It is extremely windy, so who knows what the day will bring, but for the morning commute, I think we're in the clear. Not that I have anywhere to go.

3. And since we got up a little late today, I actually helped get the boys ready for school. Eric has been handling that since I got home from the hospital.

4. I won't be drinking anymore spirits, as it can cause pancreatitis to flare up. Not wanting to do that again. At all.

5. Where did I end up finding some bigger seamless socks for Drew? Kidssocks.com. We used to get some from Gymboree for him, which he like just fine, but his feet are getting too big. I ordered the socks on Saturday night, and we still haven't gotten them, though.

6. My homemade potato soup is one of my favorite meals when it's cold out.

7. And as for the weekend, Eric has to go into work tomorrow morning. Other than that, I think we don't have any plans. Well, church on Sunday, but that's pretty much a given.

Have a great weekend!

Arbaclofen Open Label

2012-01-09T18:43:00.001-05:00

Drew started the open label part of the Arbaclofen study last Wednesday. Some of the changes we've seen:

-He has been talking a lot more. He will spontaneously ask questions and make comments about things. Things that make sense to the situation.

-The first day he was on the Arbaclofen, his aide sent me an email saying he had a great day, talking to his classmates, doing his work, transitioning well. She didn't know when he started the medicine, so that is exciting.

-We normally go to church on Sundays and the kids go to my parents' house. Yesterday morning, I wasn't feeling well, so we decided to stay home. I was hesitant to break the news to Drew, but when I did, he didn't get upset, just said ok.

-Since I was in the hospital, Drew (11) decided he didn't like baths. Eric used it as an opportunity to transition him to showers. Well, he screamed and cried all through the shower for the past few weeks. It has gotten less and less, though. Since starting the Arbaclofen, he hasn't cried during the shower and has even been asking if he can take one.

-His aide said that he wasn't as happy today as he has been thus far, but still was polite. She said he tried to talk his way out of doing every assignment. We'll be making adjustments to his dose over the next month, so hopefully things will keep getting better and better for him.

Back to School

2012-01-03T10:46:00.000-05:00

The boys had to go back to school today. I think they were ready for the return to routines. Especially with me still recovering from my "health crisis" as I've come to think of it.

Eric, his mom and Drew left for another drug trial visit on New Year's Day. They stayed overnight at a hotel in Indiana. Blake and I went to my mom and dad's house for supper. Mom traditionally makes sauerkraut and sausage on New Year's Day. She made me some noodle and rice soup since I couldn't eat the sauerkraut and sausage. Blake and I stayed overnight there. Yesterday, we went to lunch at Bob Evans and then walked around Wal-Mart for awhile. It wasn't too difficult, thought I was tired when we got back to their house. Mom and Dad watched Blake and I took a nap.

They brought me back home around four o'clock and my sister showed up as they were leaving. So, she and my niece Danielle hung out with us until eight o'clock and Blake was in bed. And as they were leaving, Eric, his mom and Drew came home. Perfect timing.

Drew did well overall for his drug trial appointment. They neglected to tell us the appointment was a three hour one, so that was a surprise for them, but there were no blood draws involved, so that made Drew happy.

I have a doctor's appointment today with the Infectious Disease doctor. They will draw my blood to see if my levels are going back to normal. My dad is giving up another one of his days off to take me. And my sweet sister in law is coming to watch the boys after school.

I'm back....maybe?

2011-12-27T12:44:00.000-05:00

I've been home from the hospital since Friday afternoon. I am so glad to be home with my family! I have some follow-up appointments coming up and hopefully I am on the right track.

When I got home, Drew burst into tears when he saw me, but recovered almost immediately and said hi. Blake went and hid in the corner and ducked his head between his knees. I sat next to him a minute and told him I was staying home with him now if that was okay. He also recovered pretty quickly. They kept pretty close tabs on where I was for a couple days, just to make sure I don't run off to the hospital again, I guess.

I don't have tons to blog about, though it's been forever since I've been here. This whole health crisis has been hard on the boys. Blake, especially. Every so often, he'll ask, "Are you better now?" Poor fella.

Eric had to work today so my dad came over to help me. I appreciate it greatly, but I think Blake's a little perturbed by the whole thing. He adores his grandpa, don't get me wrong. But I think he just wants his normal life back. I do too, to be honest.

I am tired of being tired. I hate having everything I eat go right through me. I hate the pain and the exhaustion. But I also know that I am blessed. Some people die of pancreatitis. I am still here, so I thank God for that. I don't know when I am going back to work. A couple weeks maybe? Even that seems inconceivable in my current state of health. I can barely shower without getting shaky and dizzy.

I have been longing to get back on here and blog, but I couldn't log in to Blogger from the hospital. My parents have the boys with them right now, so I am going to take advantage of it and go take a nap. Love you all!

It's been awhile

2011-12-24T17:14:00.000-05:00

I've been in the hospital for the past sixteen days. I had a gallbladder removal and my bile ducts sprung a leak and bile ran into my body cavity. Then I developed pancreatitis. It was a painful ordeal, but thank God I got to come home yesterday. I will be posting more in a few days. In the meantime, I intend to enjoy the holidays with my family. Blessings to you all!

Kristie

Spilling my medical guts.

2011-12-02T21:03:00.001-05:00

A couple weeks ago, I went to the doctor for the terrible heartburn I've been having. The nurse practitioner gave me a prescription for Prilosec and told me to stay away from NSAID pain relievers I take frequently for the headaches I have.

I hasn't helped much and for the past three days, I've been in agony. Chest pain nonstop with stabbing pains going into my back. I called the doctor yesterday and scheduled an appointment for Tuesday, the first day they could get me in. Well, this morning I was having intense pain so I called the doctor's office again to see if there was anything I could do in the meantime until my appointment. The nurse practitioner called me back and said she wanted me to go to the hospital to have some tests run.

It was nine o'clock this morning when she called. She said the tests should only take a half hour or so, so I figured I could get to the hospital and back in time for work. Ha! I ended up having to call in sick, which I hate to do. They did a blood draw, which usually takes several sticks before they get blood. This time they got it in one stick! Woohoo! I also had an EKG and a chest X-ray.

All my tests came back good except my white blood cell count, which was high. The nurse practitioner said there's not a lot else she can do right now. She told me to go on a NO fat diet this weekend and I have to have a gallbladder ultrasound on Monday.

I am guessing that is what my problem is. I have been miserable and I am hoping I can get something resolved soon.

***Edited 12-3-2011***

I went to the ER today and they did an ultrasound of my gallbladder. I have gallstones for sure. They gave me some pain meds and I have to call the surgeon on Monday.

Happy 50th Birthday Mark!

2011-11-30T08:44:00.000-05:00

The Year You Were Born

As MAD Magazine pointed out on its cover for the March, 1961 issue, this was the first "upside-up" year — e.g., one that looked the same upside down — since 1881, and the last until 6009.

John F. Kennedy becomes president of the US

In 1961, A Gallon of Milk Cost $1.05

Wayne Gretzky, Henry Rollins, Fabio, George Clooney, Dennis Rodman, and Diana, Princess of Wales are born

Disney's One Hundred and One Dalmatians is the top grossing film

Average cost of new house is $12,500.00

The first inflight movie is shown on TWA

Drew's coat woes

2011-11-28T21:52:00.001-05:00

When the boys arrived from school today, I went out to open the door for them and Drew was crying. Mrs. H. said that Drew's zipper pull on his coat was smushed and wouldn't zip. Drew was bawling, "Ibrokeit, Ibrokeit, it'sbroken, ohnoit'sbroken!" I told him that I could fix it, not to worry. I went in the house and attempted to fix it. Well, shoot, wouldn't you know it? but the thing fell apart into my hands. Just like Blake's zipper pull fell apart a few weeks ago on his new fall coat. My kids are hard on zippers. Anyway, I decided I was going to go back to the store with it and see if it was returnable. I threw it in the washer to make sure it looked decent (not slobbered up from his crying) and when I got it out of the dryer, one of the seams had come loose and it was about five inches of frayed nylon. Well, that made another reason to return it.

Eric was going to be gone tonight to work on a friend's computer. I was going to try telling Drew he could just wear his old coat tomorrow, but I knew that wouldn't cut it. That's something that could potentially mess up his whole day. I looked on JcPenney.com to see if a store nearby had the same coat in his size. They did not. The website said that a store about 40 miles away had it available. I called the store just to be sure. The girl on the phone was really nice and looked and looked but said they didn't have it. So I called another store, this one 55 miles away. They had it and said they'd hold it for me. I called my mom to tell her about the whole situation and she said she and my dad could watch the kids while I went to get it.

I told Drew that I was going to get him a new coat. He was thrilled. He said, "You going to fix it? Really?" I told him that no, I couldn't fix it, but I was going to get him another one. I dropped them off at Mom and Dad's house and headed to Beavercreek. Of course it was rainy and ugly out, but it wasn't snow, so I am not complaining.

I brought the coat in and explained what happened. I wasn't sure if it was returnable, but I had my receipt and only bought the coat three weeks ago. The girl said it was not a problem and exchanged it for me.

I got home around nine and my parents had put the kids to bed and everything. How sweet. Drew's going to be so happy tomorrow when his coat's fixed.

Sensitive Santa

2011-11-21T22:35:00.000-05:00

Sunday was Dayton Mall's Sensitive Santa event. We've done it in years past and had to wait in pretty long lines. That was always our only complaint.

Sensitive Santa is an event for kids with autism and related disorders to have a chance to see Santa Claus without all the extra sensory overload of a regular visit to Santa. All the Christmas lights and animated displays are turned off, there is no Christmas music playing, and it is before the mall opens, so there are a lot less people to deal with.

This year, instead of having a line, we emailed our reservations in and they sent us a time we were to arrive. Our arrival time was set for 9:30. We had gotten the boys geared up for it the day before by making a schedule up and talking about what to expect. Drew was quite excited that he'd have a chance to see the Dayton Mall elevator he watches on Youtube every day. He really watches Youtube videos of elevators. And I'm cool with that. So anyway, Sunday morning arrived and the boys were pretty happy about the plan.

We got to the mall and Eric signed Drew and Blake in. They directed us to the play area and gave us a number. They said they'd post our number on a big whiteboard when it was our turn. They didn't holler out numbers or anything. There was a therapy group there who provided a small ball pit and some sensory boxes for the kids. Drew didn't want to go into the play area, but stood outside it.

Less than five minutes later they put our number up. An employee walked us to where Santa Claus was, which also happened to be where the elevator was as well. Both boys were hesitant, but Drew went in the area first. Blake didn't want to. Eric decided to pick him up and carry him in. Blake was not excited about that, which scared Drew off. Eric plunked Blake down by Santa, where Blake nervously sat until someone told him he could get up. He didn't say a word to Santa. Drew wouldn't go in, and there was another family already waiting nearby with their own autistic son, so I didn't want to mess up their experience. We just let Drew not get his picture taken with Santa. He did like to watch the elevator, though. While I looked at the pictures they took, Blake watched Santa intently from a safe distance.

Drew was ready to go, but Blake hadn't had much of a chance to play in the play area. We told Drew we were going to stay five minutes then we'd leave. Blake played happily for a few minutes and was ready to go when the time was up. He got out to the car and said, "Mommy! Train station!" which translated means, "Crap! I forgot to tell Santa that I want a train station for Christmas!" Eric assured him that we'd email Santa and he could let Santa know that way. On the way home, Blake kept looking at the picture we got and saying, "Hi Santa! Ho ho ho!"

It was about two hours of driving for less than a half hour total in the mall, but it was a success and both boys were happy with having gone. Here's the pic of Blake:

Blake can read!

2011-11-15T10:50:00.002-05:00

***I think I fixed the link this time***

Here's an audio clip Blake's teacher sent of him reading the book My Dog to her.

Here is the link: Blake reading My Dog

I love it and think Blake's teacher is awesome!

Who turned off the lights?

2011-11-14T21:29:00.001-05:00

When the kids got home from school, Drew's aide told me that Drew started crying around 2:30 and she couldn't really figure it out. Blake was mad and when Drew took too long to get out of the car, he tried to push it closed and hit Drew in the head with the door. I told Blake to get in the house in timeout and I tried to get Drew in the house. He ran off into the house, smacking himself in the head the whole way. Drew was upset for awhile. I checked his head, which was okay. Blake came in and apologized to him. Drew said, "It's ok, buddy." Things were really looking up when I remembered I had bought him a new notebook this morning!

Ok, so things were going pretty well. I made supper (which Eric jokingly said was the best meal I'd ever made) Drew was on the computer and Blake was in the toyroom watching television when everything went black. It was so dark you couldn't see your hand in front of your face. Well, I didn't try it, but I'm guessing. lol.

Both boys started crying and screaming right away. I went to Drew first because he was closest. Then I got Blake in the kitchen with us while Eric looked for the flashlights. Unfortunately, the batteries were out of it. We do have an emergency kit in the garage, so Eric headed out there for batteries and flashlights.

Drew started groping his way down the hall saying that he wanted to go to bed. I guess he felt safe there. The three of us went in Drew's room while Eric arranged emergency lighting. We did have one flashlight with us in the bedroom. I couldn't get them calmed down for anything. They both screamed and cried and begged Eric to fix the lights. Blake would try to flip the light switch and when nothing happened, he'd burst into tears all over again.

We debated about taking them somewhere, but they were both in their underwear and they were completely upset by the idea of leaving. So we decided we'd just stay home. All of a sudden, a car pulled up in front of our house. I opened the front door and it was my mom and dad!

The kids took about five minutes until they were calm. They were so glad Grandma and Grandpa were here. Apparently the whole town was out of power. I think it took about an hour and a half until it came back on. In the meantime, Blake went in his room and fell asleep. Drew went in his room and got in bed, but didn't sleep. He came out a couple times to make sure Grandma and Grandpa were here.

When it was over, Eric and I talked about how we could make it better the next time we lose power. We have some Coleman lanterns, but they needed batteries. I have to admit to removing the batteries from the lanterns for use in a toy or my digi camera. So we need to make sure the batteries stay in the lanterns. Also, maybe a social story about the power going out? I kept reminding them that it's still our house, everything is okay, but they really were upset by it all. Blake woke up crying a little while ago and was still upset, even though the power was on. Poor guy!

What an ordeal! I hope we don't have that happen again soon.

Baking with Blake

2011-11-13T11:52:00.000-05:00

I was making some cupcakes this moring and after I started mixing the batter, I let Blake put the papers in the cups. Then he asked for "his" pan, which is a silicone pan which holds six cupcakes. He then puts papers in his pan puts the pan in the drawer. I finished my cupcakes up and put them in the oven. He came in and put his pan on the counter and said, "Cupcakes pleeeease?" I said that I already had them in the oven. He looked crestfallen so I got out a Jiffy cornbread mix and let him make them. He cut open the bag and dumped it in, I let him crack the egg and put it in and I measured out 1/3 cup of milk and had him pour it in. I instructed him to turn the mixer on to number 2, cringing while expecting him to crank it all the way up. He did it perfectly. After it was all mixed, he used my Pampered Chef scoop and filled the muffin cups. Since the oven was full and the pan was silicone, I got the brainy idea to put the cornbread "cupcakes" in the microwave. About a minute and a half later, they were done. A good alternative for a kid who has a hard time waiting. Of course he didn't want to try any, but was quite satisfied that he had done it. He said, "For the guys?" which meant he was going to offer them to the guys (ie-Grandma and Grandpa, Aunt Kelly and her family) at the Grandma's birthday party tonight. I am guessing he's going to want to get in on icing them when I ice the cupcakes.

Chicago in a day

2011-11-10T22:28:00.001-05:00

Yesterday was Drew's visit #3 for his STX209 drug trial. His appointment was at one in the afternoon, which is 2:00 Ohio time. I got the brainy idea to go to Chicago and back in one day. Just five hours each way, right? No biggie. Eric couldn't take off work, so his mom offered to go with me.

The weather was pretty nasty. It rained really hard on the way there and got windy the closer we got to Chicago. Guess they don't call it the windy city for nothin'. Anyway, we got to the parking garage about 45-50 minutes early and as soon as we parked, an ambulance came wailing in. Not that you wouldn't expect to see an ambulance at the hospital, but it was just unfortunate timing, because it scared the pee out of Drew. Literally. Poor guy. Then, dumb me forgot his Xanax. I accidentally grabbed his Risperdal bottle instead. I felt so bad about that.

We walked around until about ten 'til one. They called to let the research assistant know we were there and we sat down to wait. And wait. And wait! We were getting nervous because they were supposed to draw his blood four hours after we gave him his trial drug. And it was 1:30, exactly four hours later. I went up and asked the receptionist about it, who assured me that they knew we were waiting. I was annoyed. There was no way we were going to wait another four hours. I've never seen the waiting room so busy, either.

The research assistant finally came for us and brought us back to the exam room. She decided it wasn't the best room for us and moved us to a different one. She gave me a questionnaire to fill out and left us. I bet we waited another twenty or twenty five minutes. I let Drew "blow me down" where he blew air at me and I fell off the exam table where I was sitting. That entertained him for a little while. We also wrote in a notebook and had a fictitious phone conversation with Daddy, where Daddy allegedly farted. Drew thought it was hilarious.

Dr. Berry-Kravis came in and decided to draw the blood right away. She said we were still okay for time, thankfully. I wrestled Drew to the ground, which was no easy feat. Once I got him down there, I straddled him and my mom-in-law kept him from kicking. The assistant held his arm steady and Dr. B-K drew the blood quickly. Drew did his part by screaming, "Lady! Lady!" at Dr. B-K. It was over quickly and he calmed right down. She was going to send us on our way when she discovered that we needed his vitals done yet. He cooperated very well for them. Maybe because he knew the blood draw was over? He busted a rock with Shaguna the assistant and shook hands with EBK.

The whole thing seemed to take forever yesterday and it was like, 3:30 Chicago time when we finally made it out of the hospital. Drew did enjoy the elevators and used the opportunity to say hello to people and ask where they were going.

We headed for home, and thankfully the rain had subsided to a fine mist. The wind was still crazy however, and I had to really hang onto my steering wheel. Drew watched Blue's Clues six hundred times on the way home and my dear MIL supplied me with plenty of Kit Kats to hold me over until we stopped for supper.

We got home at about 9:45 last night. I think Drew and I went right to sleep. It went fine overall, but I think next time, we'll get a hotel room and make two days of it.

Trick or Treat

2011-11-02T10:10:00.000-04:00

Our trick or treat night was last Thursday. It was only 45 degrees out and not nice. It was rainy all day until right before trick or treat time. That was a blessing.

Drew wanted to be Mister Rogers. We got the whole getup for him. Dress shirt, tie, dress pants, red zipper sweater, and navy canvas shoes. We got the sweater a couple weeks early and he LOVED it. He wears it everyday while watching Mister Rogers on the computer. When it came time to get dressed for trick or treat, he wouldn't wear the shoes. Which was sort of a bummer because that made the outfit. We didn't force it, though.

Blake wanted to be Buzz Lightyear. Drew had been Buzz a few years ago, so I got that costume out and hung it up in his room a couple weeks ago to get him used to seeing it and not afraid to put it on. We practiced wearing it a couple times leading up to T or T night.

We got the boys ready and what do you know? A stupid firetruck parked right in front of our house with the lights flashing. They were giving out candy, which is nice, but when Drew saw it, he freaked out! He started saying, "No candy!" Eric had to pick him up and carry him out the front door. He refused to go to any of our neighbor's houses and kept repeating his mantra, "No candy! I want Grandma's house," We walked to his aide's house, which is just down a few houses from where we live. He wouldn't go up to the door. We walked down the next street and over to Blake's aide's house, which is also pretty close to where we live. It was getting really cold, so Eric ran home and got the van. We got in and both kids wanted to go to Grandma's house. So, that was the end of trick or treating this year. We decided that this is the last year for Drew. We won't subject him to it again. It's just not that important.

Here are some pics from the event:

This was at the beginning, when he was saying, "No candy!"

Blake was hiding on the porch of another neighbor's house.

Drew on the corner talking to himself about how he just wants to go to Grandma's house.

Blake with his aide, Mrs. Theis. I love this pic!

We made it to Grandma's house!

Me with my flower child niece, Danielle. (also a fraggle)

Chewing, revisited.

2011-11-01T15:37:00.003-04:00

A couple years ago, I posted about Blake chewing through the zipper on his coat. I came up with a solution at the time, and you can read about it here: Desperation Breeds Invention. He curbed his coat-chewing the next year and it hasn't been a huge issue. Until a couple weeks ago, when Eric and I bought fall jackets for Blake and Drew. The first day he wore it, I noticed the sleeve was wet. He had been chewing on it. There were no holes yet and it wasn't bagged out, so I just reminded him not to chew his sleeve. Today, a couple weeks later, he came home from school with the sleeve looking like this:

It's ridiculous to get frustrated with it. I knew chewing is a compulsion. I know that he's probably excited or overstimulated about something at school, like hanging out with "The kids! On the playground!" as he puts it. (so exciting!) I am debating about sewing another chewy bear arm on the jacket. I made him put the jacket on so I could decide the best spot for it, and he tried to stop me, saying, "No chewy!" So, I am not sure what to do. I can't find the chewy tube we used a couple years ago. I guess I could order him a new one, but it takes awhile to get here. Not really sure where this post is going. Just rambling, really.

*Edited to update*
I decided to make a somewhat junky homemade chewy. I stitched a chewy bear arm to an elastic headband. He seemed pretty happy with that. We'll see if it works.

I will probably only make him wear it whenever he wears his coat.

**EDIT #2**

I decided the furry bear arm looked ridiculous, so I covered it with navy jersey knit fabric.

Drug Trial Visit #2

2011-10-27T09:46:00.001-04:00

Mondya was Drew's second visit for the STX209 drug trial he's participating in. We took Blake with us, so that was different than last time. They both did well in the car on the way there. We stayed at a hotel near Valparaiso, IN. It was the same one we stayed at two weeks ago. We thought it would make things more familiar for Drew. We requested a ground floor room so we didn't have to obsess about the elevator.

Last time we went, he was super-excited about going on the elevator, and perseverated about it, but when we got there, he screamed and cried and begged us not to make him go on it. We told him he could take the stairs (to the third floor) and that was fine, but going down the stairs was another problem. We were starting to wonder if we'd be stuck up there forever. lol. So this time we decided that we'd get a ground floor room and if he wanted to ride the elevator for fun, he could. He chose not to, however.

The front desk clerk was really nice and Eric told her that we were there because we were taking our son to Chicago for a drug trial. She said she'd give us ten dollars off our room and the next time we stay, we should ask for her and she'd give us the same discount. She also popped some popcorn for the boys in old fashioned popcorn machine.

We took the boys to Chili's for dinner. My blogger friend Bonnie told me that they can't take their kids out to eat. She has five year old twins with Fragile X. (See her blog HERE) We've had our share of dining-out difficulties over the years. When the kids were younger, I'd keep them in their seat by hanging a diaper bag strap or purse strap over their lap and let the bag hang down behind them. This gave them deep pressure input from the weight of the bag and reminded them to stay put.

It annoys me that people are perfectly fine with babies and toddlers being strapped in for safety but when there is a larger kid with special needs, suddenly it is not ok. Do what you can to make things work for your family and if you get weird looks from other people, don't worry about it. Ok, rant over.

Anyway, now that the boys are bigger and I no longer carry a diaper bag, we usually request a booth wherever we go. We put the boys in first and block them in. This works pretty well. Occasionally Blake will slither under the table and sit on the floor--much to Eric's chagrin, I might add. So, back to Chili's. They had these super-awesome things at the table called a Ziosk.

For 49 cents, we could watch all the classic cartoons we wanted. There were other game apps available too, but we stuck to the cartoons.

After Chili's, we went to Target at Drew's request. We didn't need anything, but Drew just really likes that store. We walked around then went back to our hotel. The front desk worker had indeed made popcorn, so we loaded up and went to our room.

Eric tried to talk both boys into going swimming. Neither was interested. He decided to go by himself. I got the boys settled down for the night and read a book while Eric was gone. When he came back, he said that I should go down there. There was no one else around, and the whirlpool was nice. So that's exactly what I did. It was so relaxing just to sit in the hot tub and not have to worry about the kids.

The next day was the big day. Drew got two Xanax to calm him before the appointment. He didn't perseverate on the way to Chicago or seem worried at all. Blake was more anxious than Drew, actually. We got there and Drew was pretty cooperative. He didn't sit still enough for the blood pressure machine to work, so Dr. B-K had to do it manually when she got in the room. We got through everything up to the blood draw. We knew we'd have to have him lay down on the floor so we moved to a room with carpeting. We had Blake in a chair and we got Drew on the floor. I was straddling him and Eric was pinning his legs down. Drew of course, was crying. Blake started hollering, "Stop it! You stop it, Daddy!" and came to Drew's defense by getting off the chair and hitting Eric on the back. I don't know, maybe it was love for his brother or maybe he thought he was next. Anyway, it was over quickly and we had two boys to console.

After that, we went went to Portillo's, a place known for their Chicago hot dogs. It was an interesting place with a sort of fifties feel. It was pastel colors and chrome. The food was great. Drew loved the poppyseed buns and Blake loved the hot dogs, so they worked out a deal between themselves.

We got home at 6:30 and were all very relieved. Next time I am going to attempt to drive to Chicago and back in the same day. Should be interesting.

Gearing up for Chicago visit #2

2011-10-22T18:55:00.000-04:00

My father in law had a kidney transplant a week ago. He came home from the hospital last night. The surgery seems to have been a success and he is recuperating nicely.

My mother in law stayed overnight at our house with Blake last time we went to Chicago. She obviously can't do that this time, since she's taking care of Eric's dad.

Eric's sister said she could watch him for us, but she is just coming back from a three week (?) long trip to Texas. She flies in this evening, so that would be pretty hectic for her. We decided the best route would be to bring Blake with us. Drew's appointment is supposed to only last twenty minutes, having him with us for that shouldn't be a problem.

We have noticed some slight changes in Drew's behavior, but are hesitant to say whether we believe it is because of the meds. His aide told us last Thursday that he had the best day ever, so that is good. He allowed some classmates to sit at his table at lunch one day.

Today around five o'clock, we noticed that he was agitated. Then I realized that I had forgotten to give him his afternoon dose of the med. He seems much calmer now, though I think he's getting nervous about going back. I've gone over the schedule for tomorrow with both boys and posted the schedule on the fridge. Both boys have gone up to it and looked at it more than once today. We'll bring the schedule with us so we don't have to answer the question, "Where's Chicago?" forty-eleven times.

I'll update when we get back!

A food post

2011-10-18T16:33:00.000-04:00

I was inordinately impressed with the way these turned out, so I had to take a picture of them. ;) Hey, it's my blog!

This is a Kristie concoction. Here's how I did it in case you're interested:

Twice Baked Potatoes

First I baked the potatoes. After they cooled a little, I sliced them and scooped out the insides. In my mixer, I combined 1/2 stick softened margarine, a couple big spoonfuls of sour cream, about 1/2 cup of cheddar cheese and some cooked bacon. I seasoned the mixture with chives, black pepper, salt, onion powder, and red pepper flakes. I brushed the potato skins with olive oil and put them facedown on a baking sheet. Baked them in 400 degree oven for five minutes maybe. Then I scooped the potato mixture into the skins, sprinkled cheddar and mozzarella cheeses over the top. Then I sprinkled dry bread crumbs and more chives. Next, I baked them on a baking sheet for 15 minutes at 400 degrees. Yum-ola! I have bible study tonight and will miss eating them. Hope Eric saves some for me.

Morning Randomness

2011-10-13T10:06:00.000-04:00

Well, I actually get things done when I don't take a morning nap. Surprise, surprise. Last night, I was listening to a sermon on my mp3 player while ironing and getting stuff ready for today. It had a few minutes left, so I got into bed and thought when it was over that I'd read awhile. I almost fell asleep before it was done. When it was over, I decided to go to sleep instead of reading. We didn't get up until 7 this morning, so that totalled nine hours of sleep for me! Woohoo!

I organized some drawers this morning, made all the beds, did some laundry, sent some emails I needed to follow up on and I still have an hour until I have to be at work. Pretty nice!

We had a parent-teacher conference last night with Blake's teacher. I really, really like her. She does a lot of Blake's work on the Smartboard, which he loves. She showed us some of the things he does on it, and that Smartboard is pretty awesome. Someone from a nearby district loaned our school their Steam Roller to see if Blake would benefit from it. They said he loves it and it seemed to help him sit still after using it. If you've never heard of a steam roller, this is what it looks like:

The tension is adjustable and the kid crawls through, getting squished along the way. Blake's OT said he wanted it to squish him harder so she had to tighten up the tension for him. The thing costs $530.00, so I am sure it will be a hassle to get the school to buy one. There is another kid who they are thinking might benefit from it, too, so that may help the campaign. Drew would most likely not want to crawl through it.

I still can't tell if Drew's behavior has changed since we started the drug trial. Not sure if we got the placebo or the real deal. Trying not to read too much into every good or otherwise behavior.

Drug Trial Appointment Recap

2011-10-11T08:50:00.002-04:00

Yesterday was Drew's STX209 drug trial appointment #1. Well, and #2, actually. Apparently, Seaside allows study participants to combine the first two appointments if desired.

We parked in the parking garage. Drew wouldn't get out of the van, so Eric had to pull him out. Drew, of course was not happy about it and fought him the whole way. We decided to put him in our giant Maclaren special needs stroller to make it a little easier. That thing is supposed to hold up to 140lbs, but let me tell you, while it held Drew's 97 lbs, it was pretty hard to steer.

Anyway, we got out of the garage and went up to Dr. Berry-Kravis' office. They came for us pretty quickly. Drew didn't want to go into the room right away. He peeked his head in and out while we talked over some trial specs. The research assistant came in, and because she had another family coming, she tried to get Drew started with the EKG right away. Of course, Drew didn't know her at all, and he didn't want to have his shirt taken off, and he didn't want her to put those "stickers" on him, and didn't want to sit still, and most of all he didn't want to NOT pull off those "stickers" The outcome made Drew look like he had a heart condition. Which he does not. So, we decided to try again later.

Next we had paperwork to fill out and the first blood draw of the day. Since he had trouble allowing Dr. Berry-Kravis (EBK) to take his blood pressure, we knew we'd have to restrain him. We decided the best course of action would be to put him on the floor. Eric and I both straddled him. I was in charge of arms and Eric had his legs. We couldn't use the lidocaine because he had to keep some film patches on his arm for forty minutes if we wanted to do that, so we knew that would not work. EBK tried his left arm first and wasn't able to get a vein. We switched arms and tried again. He screamed and struggled the whole time. It was hard to watch. Once she hit a vein though, the blood flowed well and they got everything they needed.

After that, we did the second EKG. Eric and I set him up in front of his DVD player, put him in the stroller and we put the "stickers" back on. Once that was done, Eric and I held his arms and legs still by hugging him tightly. Eric made lots of farting noises with his mouth, so that helped distract Drew.

We got about a 45 minute break and went down to the cafeteria for lunch. The whole time, Drew kept asking if he could go back to the doctor's office. While we were gone, we were assigned to a new room. I had more paperwork to fill out. The lab came back with Drew's bloodwork and we got the go-ahead to administer the trial drug. We discussed trying Xanax to calm Drew's anxiety for the next blood draw. EBK prescribed it and Eric went down to the pharmacy to get it. He got back about twenty minutes later and we gave Drew the Xanax. It didn't really have time to work though, because the blood draw had to be done after a certain amount of time after the trial drug was administered. And the Xanax hadn't had enough time to work.

We arranged the blood draw same way on the floor and EBK started with his right arm first. He screamed, "Ow! Stop it lady!" at one point. And after it was over, he told EBK, "You are NOT NICE to ME!" Poor guy.

After that, we were allowed to leave. Drew was happy to get out of there, but it was a long drive home, with him asking to go home repeatedly. We all slept until 7:30 this morning, leaving us about a half hour to get everyone ready.

We learned some things about the way we'll do things in the future to make each trip smoother. We go back in two weeks. We discovered when we got home that we had left his Family Feud DVD there. I will update about his anxiety soon. Not sure if we got the actual drug or a placebo. We go back in two weeks. Eric and I are very proud of him. It was a rough day for him, but he got through it the best he could.

Drew funnies

2011-10-08T09:38:00.001-04:00

We are watching our niece Ashley's baby today while she works. We've only had him here a half hour and Drew has already said some funny things.

First he said, "Hi Baby! Did you miss me?" then, "Baby, you're like, at our house!" and a few minutes later, "Hi Caleb, I am Drew Meyer. You are so nice to me!"

Blake's Lion

2011-10-07T08:23:00.001-04:00

My sister sent me these pics of Blake with his new lion from Kohl's. Think he liked it?

Here are some other things he did that day:

Had fun with Kyle, who is six years older

Climbed into store displays

and rode the penny horse ride at Meijer! What a great day!

2011-10-04T00:17:00.000-04:00

Tonight Eric told me that I'm a blog slacker. And I guess he's right. It's been a week.

Tomorrow is our IEP meetings for Drew and Blake. I think we have them complete. We worked on them and sent them back and forth between us, teachers and therapists. Hopefully it will basically be a read-through and we can be done for another year. I know it's important and I like to see the progress the boys have made in the past year, but to me, it is not a fun project. Necessary, but not fun. We are not parents who will just go into the meeting and sign the papers. We want to be actively involved in the IEP writing process.

The past couple days have been hard for Drew. His anxiety level has been really high. We're still muddling through that the best we can.

Blake and I went shopping yesterday with my sister and her son, Kyle. (Kyle has Fragile X as well) It was fun and funny. There were some not so funny moments, like when we lost Kyle at the mall. You wouldn't think you could easily lose a 140lb redhead fourteen year old, but it can be done. We were in Sears and he wandered out into the mall. Thankfully there was someone there who knew us and saw us looking for him. She said, "Are you looking for Kyle? I just saw him out in the hallway." Kelly located him from there and off we went. We lost him twice more as the day went on.

In the van, I was trying to get Blake to name coins and their value. Then Kyle started asking him math questions, like "What's 5+5?" and "What's 10+10?" Later, Kyle quizzed Blake on spelling words. He asked Blake if he could spell mom, mother and Father Steve. lol, that boy (Ky) does love Fr. Steve.

In the dressing room, Kyle decided he wasn't enthused about trying on pants, so Blake offered to help. And when Kyle sneezed, Blake blessed him.

We ran into my cousin Margie at Kohls and she loaned us her 30% off coupon. Blake wanted a stuffed lion by the registers. At first I told him no, but then I thought, what the heck? It's only going to be $3.50 after the discount. Blake was so happy! Kelly took a pic on her iPhone and was supposed to email it to me, but was a bit remiss on her follow-through.

It's now after midnight, and sure as anything one of the kids will wake up at 5:30 for the day.

Monday

2011-09-26T20:33:00.000-04:00

I got off work today at 2:00 and went to the grocery in search of something interesting to make for supper. I had about 40 minutes until the boys walked through the door, so I wasn't in a big hurry. The store is just around the corner from my house. I moseyed around and finally remembered the steaks I had in the freezer at home. I picked up some ingredients for cheesy potatoes and headed home.

I usually like to have showered by the time the kids get home, but I figured, what the heck, I'll worry about that later. I got in the house and suddenly I remembered that I had a teeth cleaning appointment at four o'clock. An appointment for which I had made no childcare arrangements. I fleetingly thought of blowing off my cleaning, but then I pictured the hygenist sitting there waiting for me, so I called Eric's parents' house. They agreed to watch the kids.

That done, I looked at the clock and saw that I only had like seven minutes until they got home. And that is not long enough to shower. I waited for them and met them in the driveway. I warned the kids as they got out of the car not to take off their clothes, that we were going to Grandma Meyer's house. Blake was thrilled and went in the house, no problem. Drew was a little upset by the change in his plan.

I laid out the schedule of events: (go to Grandma's, Mom to dentist, boys play, Mom comes home, go home for supper) When we got there, Drew wouldn't go in. I wasn't really surprised, given the change of plans. I told my mother in law that I was going to leave and expected that he'd go in as soon as I left. And that's exactly what happened. I backed onto the road and before I had the van in drive, he was in the house.

When I got back, everyone was relaxed and watching Pinocchio. When I started picking up their toys, they both put on their shoes (without prompting!) and were ready to go. In fact, they went out to the van a little faster than I would have liked, but I'm not complaining.

Overall, I thought it went well. Not the actual dentist appointment, but the kids. I'd be happier with my dentist appointment if I didn't have a cracked tooth that needs repaired. Oh well. Such is life!

Social Stories with Boardmaker

2011-09-21T17:00:00.002-04:00

Recently, Eric and I got the new Boardmaker Studio. I haven't learned all the bells and whistles yet on it, but I am happy to have it for the schedules.

Every day, the boys' aides drop them off after school. I usually talk with them a few minutes and go in the house. I have the televisions on for the boys along with a snack ready to go for them. I know they could do this themselves, but it helps with the transition. Anyway, the past couple weeks, they don't seem to like when I talk to their aides. They yell at me from the door, or close and lock the door. I like being able to talk to both of them after school, so I decided that I'd try to make a social story of sorts using our new boardmaker program. I think it turned out pretty well. Now if it is effective, that will be awesome!

*edited to add that I made a picture which I will tape on the door before they get home.

I'll update later how it goes.

**Edit #2**

So I had everything set up for them. Snacks, favorite shows, etc. I taped the sign to the front door. Well, Blake ran in first, slamming the inside door behind him. That wouldn't have been so bad, but it was locked (Oopsie, guess I forgot that detail!) and Drew burst into tears. I ran into the house from the garage and let Drew in. I had placed his social story beside his snack as a reminder, and I headed back outside. I talked for a couple minutes with Drew's aide and was pleased that there were no boys in their underwear yelling at me from the porch. When I got back in, they were watching television and eating their snacks! Is there something wrong with me that I call that a success? Nah, because it really is. :)

Drew stuff

2011-09-19T10:29:00.000-04:00

Drew is three weeks away from his first appointment at Rush for the Arbaclofen trial. I am excited about him getting on the Arbaclofen, but I am nervous about the first appointment. He will have to have two blood draws and an EKG. I think they said the first appointment would last like, five hours or something. We are going the day before and my mother in law is staying with Blake and getting him off to school on Monday.

I hate to pin my hopes on this drug, because we don't know if it will really work for Drew. However, everyone I talked to is saying that it is a "wonder drug" for people with FXS and severe anxiety.

The things we've been doing at home like picture schedules, video modeling and sensory input have been helping a lot, and we'll continue it after he's on the Arbaclofen, but having some medicinal support would be nice as well.

We went to church yesterday and dropped the kids off beforehand. In the morning before we left, Drew watched our video modeling "Grandma's House" video. It went pretty well. He is still not going in right away, but as soon as Eric and I leave for church, he goes in. I am thinking next time, Eric and I will drop the boys at the door and as soon and my mom and dad open it, we'll leave for church and see how that works.

2011-09-14T09:44:00.000-04:00

I read this article written this morning and I was really inspired by it. Thought I'd share it with you. I've bolded my favorites.

Written By Regina Brett, 90 years old, The Plain Dealer, Cleveland , Ohio

"To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written. My odometer rolled over to 90 in August, so here is the column once more:"

01. Life isn't fair, but it's still good.

02. When in doubt, just take the next small step.

03. Life is too short to waste time hating anyone.

04. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.

05. Pay off your credit cards every month.

06. You don't have to win every argument. Agree to disagree.

07. Cry with someone. It's more healing than crying alone.

08. It's OK to get angry with God. He can take it.

09. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past, so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. No one is in charge of your happiness, but you.

25. Frame every so-called disaster with these words ''In five years, will this matter?".

26. Always choose life.

27 Forgive everyone everything.

28. What other people think of you is none of your business.

29. Time heals almost everything. Give time, time.

30. However good or bad a situation is, it will change.

31. Don't take yourself so seriously. No one else does.

32. Believe in miracles.

33. God loves you because of who God is, not because of anything you did or didn't do.

34. Don't audit life. Show up and make the most of it now.

35. Growing old beats the alternative -- dying young.

36. Your children get only one childhood.

37. All that truly matters in the end is that you loved.

38. Get outside every day. Miracles are waiting everywhere.

39. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

40. Envy is a waste of time. You already have all you need.

41. The best is yet to come.

42. No matter how you feel, get up, dress up and show up.

43. Yield.

44. Life isn't tied with a bow, but it's still a gift.

Saturday Afternoon

2011-09-10T17:01:00.000-04:00

Eric and Blake went fishing with Eric's dad. Originally, Eric was the only one going, but when Blake saw Grandpa Meyer, he said, "I'm going fishing, Mom!" and ran to his room to get some clothes on. He had his clothes on and Woody and Buzz Lightyear snugly in his arms. I told him he should leave Woody and Buzz here since last timehe went fishing, he lost his play cell phone (in the lake). He said, "Please?! I be careful." Of course, I relented. He got his own carseat out and put it in the van. Then he proceeded to buckle Woody and Buzz into the seat next to him. Too cute.

Drew has been quite happy with this arrangement since he didn't have to fight Blake for computer time. I waited until he lost interest and moved on to something else before getting on the computer. And the second I sat down, he protested, "It's my turn, Mom!" But, of course.

A to Z about Me

2011-09-07T08:35:00.000-04:00

I borrowed this from Kari at ShoeBockGreetings:

{a} age :: 35
{b} bed size :: Queen-I like my sheets 600 thread count or higher if you're buying....

{c} chore you hate :: Laundry
{d} dogs :: Nope
{e} essential start to your day :: having an awake kid. Otherwise I am still sleeping!
{f} favorite color :: Green is my favorite.
{g} gold or silver :: Don't care either way, I guess.
{h} height :: 5'7

{i} instruments you play :: Flute, though not very well. Sometimes I still pull out my flute and play Blue Ridge Saga, though.

{j} job title :: Lunch Lady at Fort Loramie Schools. I love my job. It is not a glamourous job, but I love the kids. And it keeps me busy for three hours a day while my kids are at school. Plus, I get to see them while they have their lunch.
{k} kids :: Drew (11) and Blake (8)
{l} live :: Fort Loramie, Ohio
{m} maiden name :: Vagedes gets misprounounced all the time. We always knew when a telemarketer was calling because they always pronounced it Va-GET-is.
{n} nicknames :: Hmm..Eric calls me "Honey" or "Hon" a lot. Hardly ever says Kristie. And My sister always calls me "Sissy" or "Sis".
{o} overnight hospital stays :: A few. Having kids, foot surgery as a kid.
{p} pet peeve :: I can't really say misplaced commas, since I am the queen of that. Maybe just gossips. It annoys me when people have to "get the dirt" on others. Especially when they totally overlook the plank in their own eye while looking for the speck in others'.

{q} quote :: I have a lot of scripture quotes I like, but this one always gets me:

And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful. Rev. 21:3-5

{r} righty or lefty :: Lefty. One time my friend Pam and I wrote a letter to Mead asking them to make a right-handers' notebook with the spiral on the right side.
{s} siblings :: I have an older sister, Kelly, who always tries to get people to believe that she is five years younger than me instead of five years older.
{t} time you wake up :: Depends on the day. Usually by 6-6:30 with the kids. Sometimes earlier, like today. Blake was up at 5:30.
{u} university attended :: I didn't. Well, actually I went to community college for awhile, but I dropped out. And I'm ok with that.
{v} vegetables you dislike :: Cauliflower
{w} what makes you run late :: Eric Meyer!
{x} x-rays you’ve had :: Too many to list! I am clumsy!
{y} yummy food :: Fettuccini Alfredo, Pizza, mashed potatoes, bread.
{z} zoo animal favorite :: Monkeys

Baby!

2011-09-05T22:40:00.001-04:00

My niece Ashley and her baby came over on Saturday afternoon. Eric had gone to the grocery, so it was just me and the boys. It had been two weeks since I'd seen him, and he's only four weeks old! So, I was elated to say the least. Blake loves the baby and wouldn't leave his carseat alone at first. Eric came home soon after Ashley got there. I put the baby in a beanbag chair while we unloaded groceries. Blake thought this was wonderfully exciting, so he got out the other beanbag chair and sat beside baby Caleb.

My child looks like a giant next to that sweet baby!

He kept saying, "You hold her?" and, "I talk to her?" I told Blake that Caleb is a boy and we say "him" and "he" and he would say, "Ok, Mommy" but go right back to calling Caleb "her". Darn pronouns!

Anyway, we ordered pizza for supper and Blake went with me to get it. He kept asking, "Where's baby?" He was really excited about him all day. They were still here when Blake went to bed and the next morning, he even asked where Caleb was.

Great Uncle Eric

I am smitten with him!

After we ate, Drew was watching Wall-E and I brought the baby in and sat down by him. I didn't say anything, but Drew said, "He's amazing!" I thought it was sweet, and said, "He IS amazing," Drew said, "Yeah, he's huge!" lol. Not really.

Ashley, thanks for spending the day with us. I had soooo much fun! Bring your boy back soon!

Video Modeling Update

2011-09-05T22:26:00.000-04:00

If you didn't read my blog post about video modeling, click HERE. This Sunday we decided to give it another try. While we were getting ready in the morning, I started up the "Going to Grandma's house" video and went back to ironing. Drew was drawn right to the computer, as I knew he would. He sat down and watched it several more times.

We left for my mom and dad's house without much incident. We parked the car at their house, and Drew gave a halfhearted protest about getting out. After I headed back toward the van to help him, he decided to get out on his own. He ran up to the door and rang the doorbell repeatedly, even though the door was already opened for Blake, who got there first. But, we have our steps, you know. Eric and I went inside and my mom and dad told Drew he could come in when he was ready. He opened and closed the door a few times.

Eric and I were a little behind schedule, so we left for church. Before we got to the street (and my mom and dad live right across the street from the church) Drew had gone inside the house.

So, it was definitely an improvement from the previous week.

Thursday Afternoon Randomness (list-style)

2011-09-01T15:16:00.000-04:00

1. Drew has become obsessed with Mister Rogers' Neighborhood. He was into the show a couple years ago, and I think he forgot about it. He recently re-discovered it and watches it on PBSKids.org all the time. Something he's picked up from the show is every day when he gets home from school, he will go in his closet and hang up his shirt, like Mister Rogers does with his sweater. I always have to sneak in there later to put his shirt in the laundry. He also tries to get us to let him wear a zipper sweatshirt when he is going somewhere. Pretty soon it'll cool off and we'll let him. He's going to be so happy!

2. Blake's special ed teacher wrote me a note that said Blake is able to participate with her normal (sp. ed.) classroom activites. Last year he did it some, but spent some one on one time with his aide while the others had classwork. This year he is able to do it! Woohoo Blake. Also, today after lunch, I saw his special ed teacher walking through the cafeteria making crazy left and right turns. It only took me a few minutes to realize they were practicing left and right (I'm so smart!) It was so cute, she was going and there were three or four little boys trailing her, like a mama duck with her ducklings. They disappeared for awhile and came back with a new leader. I thought it was a really fun way to work on left and right. Blake was at the back of the line and he was visibly excited about it.

3. I am so proud of Drew for the way he's handling his weaning from his prozac. I know it's really hard for him, but overall he is managing. He went with Eric last night for haircuts. He talked himself through the process, using phrases Eric used in our video modeling, even though the modeling was for a visit to Grandma's house. Afterward, Drew wanted to go to Wal-Mart. Eric was surprised, and asked what he wanted at Wal-Mart. Drew told him he wanted a notebook (one of his obsessions) Eric asked if he'd rather go to "the red store", which is Staples. Drew that that was a fantastic idea and off they went. Eric said Drew walked up and down all the back-to school aisles and checked out every display. Eric told him he could pick out a notebook, and Drew had a hard time deciding which he wanted. He settled on a small black notebook.

4. Blake has been watching Inspector Gadget on Netflix a lot. I have to laugh, because I loved that show when I was a kid. I still remember some of the episodes. Blake is gettting so good at maneuvering the Wii Remote that he can change episodes and start one over if he likes. I am so proud of him!

5. Things are going well for us. We got Boardmaker Studio a program to make picture schedules. At least, that's what we thought we'd be doing with it. And we can, but that's not all it can do. It seems there are tons of different things we can do to support our boys' day and make some educational activities as well. Pretty neat. Eric only installed it yesterday, so I haven't played with it much, but I can't wait to get started with it.

Video Modeling

2011-08-28T23:46:00.000-04:00

For years, my mom and dad have been watching our X-men while Eric and I go to church. For the past--I don't know--two years? Drew has had some major transition issues. He'll refuse to get out of the car, then when he does get out, he runs to the house and shuts the door behind him, trying to keep us out. Or he'll throw the door open hard and a bang it into the wall.

Don't get me wrong, he loves to go there. It's just the getting us out if the way and off to church so he and Blake can have Grandma and Grandpa to themselves that is so difficult. Last Monday, I made a video of going into my parents' house. I gave a play-by-play of what we'd do (ie-go to the porch, ring the doorbell, etc.) My mom and dad played their parts with the things they always say when we go there. Between Drew and Blake, it was viewed 81 times in the past week. That's the literal number. So, we thought we'd try to duplicate it today for church. We also set them up with the picture schedule for this morning. Oftentimes Drew will start to get anxiety about the whole siutation and say, "I NOT going to Grandma's house." He really didn't say that this morning. He did tell me that he was going to stay with Grandpa while Grandma went to the store, but I just told him that was fine. We saw him go over to the fridge this morning to check his schedule. I LOVE that! It tells me that the schedule means something to him and gives him some degree of reassurance.

Of course, if this were a perfect remedy, Drew would have been able to follow the video and make his transition a lot easier. Blake re-enacted the video easily. Drew wanted to, but it was so hard for him. He got to the front door, but wouldn't come in. My dad went out and sat on the front porch with him until it was time for us to go to church. I guess he was ok after we left, because he wasn't on the porch anymore when we got back. :)

I am debating about what to do at this point. Do we follow the video model and try again next week? My gut tells me this is a good idea. My heart (which feels bad for Drew) wants to make it easier on him and see if Grandma and Grandpa can just pick the boys up next Sunday. They'd be more than willing, but I don't want to give up on the process, either.

I have to say that my parents are awesome and willing to do whatever will work best for us. Not to mention taking care of our kids while we're at church then feeding us lunch afterward.

What a difference a day makes!

2011-08-25T08:32:00.000-04:00

These are pictures from yesterday's first day of school:

And these are pictures of their second day of school:

How picture schedules are improving our lives

2011-08-22T22:04:00.000-04:00

1. I don't have to always answer the question, "What's next?" and, "Where I go?"

2. The boys will see me getting it ready and will ask what we are doing. When I have it completed, I will show it to each of them, reading it to them. They both watch attentively.

3. On Saturday morning, I unexpectedly had to watch Kyle and Danielle (my niece and nephew) because of a minor emergency. I hurriedly made up a schedule for it saying what we were going to do and ending it with "Kyle and Danielle go home" and put it on the fridge. Drew and Blake seemed ok with it. After Kyle and Danielle were here a couple hours, I saw Drew go over to the schedule, look it over and go away. He was calm and didn't have a major problem. It showed me that he is actually using it and cares what it says.

4. We were able to successfully visit Drew and Blake's school on Friday using the schedule.

Overall, the small amount of work and planning it takes is well worth it. We've tried very hard to "stick to the schedule" so they learn to trust what it says. And we're seeing encouraging results. We will definitely be keeping this up.

All done list

2011-08-17T08:00:00.000-04:00

I forget what the right name for it is, but I call it an All Done list. Remember the crazy school shopping we had on Sunday? Well, the clothes still needed to be tried on the boys to see if they fit. I've been using the schedule for things that don't require their active involvement (they just have to be there) and now I thought I'd try the All Done list. I quickly drew two pictures of pants on small squares of paper to represent the pants I wanted them to try on.

Blake went first because he's usually more cooperative for trying on clothes. I showed him the (pitiful) pictures I drew and told him that after we tried on the pants, we'd move the picture to the All Done side of the board. I said to Blake, "When you are all done, it will be Drew's turn." No problem. Drew watched. I gave Blake a high five and told Drew it was his turn. He actually cooperated! When he got each pair on, I had him move the picture to the All Done side of the board. He did both pairs no big deal, and he also got a high five afterward. I asked them if they wanted to try on shirts today or tomorrow. They both agreed that we'd do that tomorrow. Great. I can be flexible. :)

All Done!

The things we say

2011-08-16T08:29:00.000-04:00

Karen at Red Letter Living had a blog post called "Top 10 phrases you hear at our house" She asked what are the phrases we say in our house. I decided to blog about it here. Her original post can be found HERE

Ok, so at the Meyer house, the top ten phrases you hear are:

10. "No hit!"

9. "Don't put your fingers in your butt." Nas-tay!

8. "Iron a shirt for Daddy!" (said every day while ironing and must be said in a sing-songy manner)

7. "Use your spoon."

6. "You need a squeeze?" (between beanbags)

5. "You are fine...." Even when he clearly isn't, it is my habit to say that. Don't know why. I guess it's a long-tme soothing thing. Usually accompanied by, "It's OK."

4. "I love you." Blake loves to say this spontaneously to us. Drew does it sometimes too, and recently learned the sign for "I Love You" by watching Richard Dawson do it at the end of every Family Feud episode.

3. "Smell my feet!" Another ritual in the Meyer household. Both boys will throw themselves on the floor and hold their foot in the air until you pretend to sniff it and say, "Ewww! That is soo stink-ay." This originated with Grandma Vagedes when they were babies and has evolved into differing phrases for different people. There is a script for everyone.

2. "Where's Daddy?" Usually this is just for reassurance that the day is going as planned and Daddy is at work where he belongs. (sorry hon!) When Daddy is off work, the day might not be as predictable and thus nerve-wracking. Much love to Daddy of course, but an ever-present need for the schedule.

1. "Help me, Mommy!" This is one we are working on. I am glad to help my kids. Truly I am. But the more they say it, the more I realize that I do a lot of things for them that they can do for themselves. I am trying to help them understand that they are capable of doing things on their own. They are starting to get it and to realize that there is a certain power that comes with it. Woohoo to my X-men.

More motivation for schedules

2011-08-15T16:36:00.001-04:00

So yesterday Eric and I decided to take the boys school shopping. We went to Sears first and saw a backpack that would work well for Drew. We then went on to the shoe department. We didn't find anything we wanted there, so we asked them to hold the backpack and went on to Shoe Sensation. They were having a big sale on Skechers, (buy one, get one half off) which is what the boys wear. They were the velcro Z-strap type shoes. Well, we allowed Drew to take the Sears shopping cart into the mall to make the transition easier for him. That was ok, but he didn't want to go into Shoe Sensation.

In a brave move, Eric asked the sales clerk if we could take a pair of shoes into the hallway to try them on our special needs son who had too much trouble coming in the store. She looked conflicted, but decided to allow us to take one shoe out to try it on him. This worked rather well. Drew sat on a mall bench and I went out and helped him try on the shoe. We discovered that his feet have not grown, but he still needs a new pair, since the old ones are quite worn out. He cooperated well. I think it helped that the store has one whole wall that is glass and one of the clerks stood watching us. And that Eric and Blake were still in the store. Blake had his heart set on the exact same pair of shoes he had before. The only problem with that was they didn't have his size. We told them we'd be back.

We went on to JcPenney and looked at clothes for the boys. Blake felt up a mannequin who was modeling a bra and underwear. Drew pushed his cart around while Eric and I looked for pants to try on them. Well, I guess Drew'd had enough and stood in the women's department saying, "No pants! I stay out of pants!" We should have taken that as our cue. We went on to look at Blake's size shirts where Drew followed us, but started throwing clothes off the table and onto the floor. We quickly decided to buy everything, try it on at home and return what didn't work. I told Eric I'd head toward the van with the boys and he could stop at Sears and buy that backpack and meet up with us in the van. Drew heard me and was quite upset. "No van!" he said. Blake wanted to stay with Eric, so I told Drew that was ok, we could just wait in the mall then. He took off at a run with his cart and let it go at the doors of JcPenney. It went flying into a display stand which held some flyers. The metal thing crashed to the floor and everyone within hearing range (read: the whole mall-or so it seemed) came to see what the ruckus was about. I put Drew in timeout, mostly just so he'd stay put while I cleaned up the mess and tried to reassemble the display.

Eric and Blake came out of JcPenney and they went on to Sears, leaving me and Drew to go at our own pace. Which, as it turns out, was a full-on run. Now, Drew is not that coordinated and you'd think I could keep up with his crazy run. Of course, after the huge display debacle, you'd think any shred of dignity I have would be gone and I'd make haste in chasing after him. But no. Not me. I tried to walk quickly, but refused to run. Well, he abandoned his cart and went out of the store into the parking lot and to the van. By the time I got to him, he was biting the heck out of his arm and screaming that the van was locked. Thank the Lord that He kept Drew safe, because I surely didn't.

I didn't really even try to talk to him, because I knew he was beyond hearing. Eric and Blake came out and we drove to the other side of the mall, where Eric ran in and bought the shoes for the boys, settling on a second choice for Blake. We'll have to see how that goes over.

Anyway, Drew was upset, saying, "No snack! No milk!" for about five minutes. After that, he was fine.

I would be lying if I said Eric and I handled it well. We dealt well with the kids, but were snapping at each other. There was some miscommunication in the first place about whether we were going shopping or not in the first place, so we didn't put it in the schedule for them. We did tell them in advance, and they seemed ok with it at the time, but who knows? Anyway, I am more determined than ever to use the schedule.

In fact, I got out the picture schedule I got from Cindi Rogers at the Missouri Fragile X conference we went to and made one up for tonight. I had to make a generic "Grandma's house" one because my printer is out of ink, but it works. We've already done step one (snack) on the schedule. That worked well.

We are currently weaning Drew off his Prozac for the Arbaclofen trial we are starting in six weeks, so I am hoping the schedule will alleviate some of his anxiety in the meantime.

ARC Pool Party #2

2011-08-12T12:03:00.000-04:00

Last night our county ARC had another pool party. The weather was a little chilly for a pool party, but the boys were excited about it. The last time we went, we rode with my sister and her kids. Eric didn't go to the last one. This time he was planning on going. If you know a fragile x kid, you know something as minor as changing the people who will be present can cause a meltdown. I wrote up a schedule of events, especially for Drew, since he's so anxious, but went over it with both boys for good measure. First we'd eat supper with Daddy, then change into swimsuits, then ride in the van to the pool. Next was swimming, then we'd go home.

Things went really well. The kids went right into the pool and they had a great time. Eric got in the water with them. I had my swimsuit on under my clothes, but it was chilly and I was not excited about getting in the water. My sister and her kids were there, so we talked with them. Our parents came to see their grandkids having fun swimming.

Drew wanted to go in the "big pool" so he and Eric did that. Blake really wanted to get in the big pool, but was nervous about it. He kept getting close and putting his legs in, but if Eric came close to get him, Blake would dodge off the steps. Finally, Eric got him in, and Blake clung to him like a wildcat. It was funny. He got out quickly and headed back to calmer waters.

When I looked back at the pictures of the night, I can see how Blake was hyperaroused all night. You can see how tense his muscles all are and he flapped his hands a lot. Not that it's so bad when he was happy, it's just something I observed later. When it was time to change into regular clothes, he started crying. He said, "Kiss it, Mommy?" I asked if he had gotten hurt. He said, "No, I cold!" Poor baby. I got him all dressed and it was better.

Next, Eric was going to change, so he took Blake with him, while I took Drew and helped him changed. After we were finished with that, Drew was upset because Eric and Blake were still not out of the dressing rooms and he really didn't want to leave anyway. So, we had a small transition issue at that point. About a minute later, Eric and Blake emerged from the dressing room and we were on our way home.

Eric and I had a "side dialogue" about how good the kids were at the pool and how proud we were of them. Of course they were listening to every word, and Drew asked if we could go swimming again. I told him we could and maybe even when we have to go to Chicago next time, we'll swim at the hotel. He seemed happy about that.

Here are some pics of the night:

Drew told me to get in. He even offered to catch me if I jumped in. lol. Funny guy.

A Lunch Date for Drew

2011-08-09T14:14:00.001-04:00

Drew's aide called me yesterday and said she wanted to take Drew out for his birthday, which was a couple weeks ago. She said she wanted to take him to McDonald's and the park. We set up the date for today at eleven o'clock.

I wrote up a schedule for Drew. It looked like this:

1. Mrs. Hoehne picks up Drew.

2. Eat at McDonalds.

3. Play at park.

4. Come home to Mom.

I read it to him a couple times yesterday afternoon, then posted it on the fridge. Whenever he asked, "Where I go tomorrow?" I said, "Let's look at your schedule," and read the list to him again, having him read some of the words. This morning, I started ironing his clothes to wear, and he said, "I come home to you later?" I assured him that he would. He seemed very calm about the whole thing until about ten minutes before it was time to go. I think he panicked a little. When Mrs. Hoehne got here, he was draped across the couch, hiding his eyes with his arm. We eased into getting him out to her van, but once he got there, he was fine.

When they got back, Drew didn't want to get out of the van. Mrs. H came into the house and we attempted to talk. Drew ran in the door, slamming it as he went and started saying, "No milk! No oatmeal pie!" lol. What he want always comes out in reverse when he's agitated. Mrs. H decided that he didn't really like having her here where she doesn't "belong" and so she left. Blake was all worked up because Drew was worked up. I got them both settled down and we opened the stamp set Mrs. Hoehne gave Drew. They both liked that!

Overall, it was a huge hit! I can barely count the small snafu of coming home. When things settled down, I asked him if he had fun today. He said, "Yes, I like Mrs. Hoehne."

What I did this weekend.

2011-08-07T20:54:00.001-04:00

Eric and I left on Friday morning for a one-day Fragile X behavior conference in St. Louis, Missouri. The boys were at ARC camp and we had made arrangements for their care this weekend.

We got to the hotel in the afternoon. We checked in, unloaded our stuff and headed to the lounge for a drink. We asked the bartender for some recommendations. She suggested we go to The Hill, an Italian-American neighborhood, which has lots of good Italian food. After we got lost and ended up in some totally other area, we stopped in at a Domino's Pizza and got directions to The Hill and recommendations for where to eat. We went to Favazza's Restaurant. It was so good. I got lasagna and it was delicious. But very, very hot.

Anyway, the next morning, we went to the hotel restaurant to have breakfast then headed to the where the conference was being held. We signed in and went into the conference area. Cindi Rogers (one of the presenters) saw us and came over to say hi. She is so sweet.

We sat down and listened to the keynote speaker, Marcia Braden, an expert in the area of Fragile X and behavior. She started out the day by giving an overview of fragile X behaviors and what causes them.

After Marcia's talk, we went to listen to Dr. Ave Lachiewicz. I have never known for sure how to say her name, but it is prounounced LaKahvich. She spoke about behavior from a medical and physiological standpoint. It was during this time that I sat by a fragile X friend, Kari. It was nice to see another familiar face. Eric and I ate lunch with Kari and another Fragile X family. I loved how she packed her lunch. I was a little scared about the strange food choices available. If I hadn't been coming from Ohio, I would have packed, too. As it was, I had pork tenderloin on a pita with mango chutney, a peach and chips. I ate the pork tenderloin, scraped off the mango chutney and ate my Doritos. lol. There was nothing wrong with the food choices, I am just a little picky.

Me and Kari at the end of the day

Anyway, after lunch, Kari saved us a seat in Cindi Rogers' session. I just think the world of Cindi. I have attended her sessions before at other conferences, but I am always so inspired by the success she has had. She is so devoted to her sons, who are in their twenties and have fragile x. She decided to go from being reactive to the problems to being proactive in trying to prevent them in the first place.

She has a lot of great ideas. One of my favorites is still the Ready-Not Ready method. I posted something on Facebook awhile back about Drew screaming his head off while I cut his nails. Cindi reminded me of the Ready-Not Ready method she uses with her guys. Basically, I'll tell Drew that his nails need cut. I tell him that when he's ready, he should let me know. If he balks, I said, "Oh, you're not ready? That's ok. Just tell me when you are ready and we'll do it." It was like following a script. A few minutes later, Drew told me he was ready. And he didn't fight me when I cut them. Two things I learned. Giving him a little control of the situation made him much more cooperative. And relinquishing a bit of my control got the job accomplished much better than if I had insisted he get his nails cut when I wanted it done.

Another thing she does is the "All Done" method when teaching her guys a new task. She breaks it down and as they go through each part of the task, they move a picture symbol from one side of a velcro board to the "all done" side. This helps them learn the steps of a new task and they know when the task is over--when there are no more picture symbols to move.

We are going to attempt to implement a regular schedule with the boys. We may wait until school starts, but it might be a good idea to do it sooner. Not sure what I'm going to do about that, yet.

The goal is to try to relieve their anxiety by telling them what's going to happen, who is involved and how long it is going to last. That alone could reduce a lot of anxiety. We got some great ideas and Eric and I are looking forward to trying some. Maybe not all at once, but one or two at first, and we'll see where we go from there.

After Cindi's session, we went to a workshop with Dr. Braden to discuss practical things to do with problem behaviors. We asked a question and she gave us a suggestion for what to try. I am looking forward to seeing if it makes a difference.

After the conference was over we went back to the hotel to freshen up and met up with Cindi in the lobby with three other women from Kansas. Two were Fragile X moms and one was a Fragile X grandma. We went out to dinner and sat and talked for a long time. We laughed and laughed. It was really wonderful. Eric took a pic of all of us at the end of the evening.

Today we had breakfast and hurried home so we could see our newest great nephew, who was born on Friday.

Here I am, holding the little sweetie. I love him so much! I am so happy for my niece and her husband.

A food post

2011-07-28T13:05:00.001-04:00

It's been awhile since I posted about food. I saw a recipe online that looked good to me. I saved it and tried to forget about it. Alas, I could not get it out of my head, so I decided to try to make it. Now, the first rule of cooking and baking is to assemble all your ingredients before you begin. That way, if you are in the middle of mixing, you don't discover you are missing important ingredients. See where I am going with this?

Well, the recipe was for Pepperoni Pizza Puffs. I started whipping things up and came to discover that I was missing not one, but two ingredients. First I discovered I had no more eggs. Oopsie. Forgot about that. So I googled a substitute and followed that one. (dab of milk and a little oil) I went into the fridge to get pepperonis, and what did I find? An empty package. Blaker! He loves those things. Anyway, I considered just making them without the pepperonis, but I figured it would be a little bland without them. Then I remembered that I had some bacon in the freezer. I cooked some up in the microwave, chopped it up and tossed it into the batter. I also threw in a little cheddar cheese.

So, they aren't exactly Pepperoni Pizza Puffs, but oh my! they are good. And fattening. Here's how mine turned out and the original recipe:

Pepperoni Pizza Puffs
Uploaded by Monica H at http://www.lickthebowlgood.blogspot.com/

3/4 cup flour
3/4 teaspoon baking powder
1 tablespoon Italian seasoning
pinch of salt (my addition, optional)
pinch of red pepper flakes (my addition, optional)
3/4 cup whole milk
1 egg, lightly beaten
1 cup shredded mozzarella cheese
1/4 cup grated Parmesan cheese
1 cup cubed pepperoni
1/2 cup store-bought pizza sauce

1. Preheat the oven to 375 degrees. Grease a 24-cup mini-muffin pan. In a large bowl, whisk together the flour, baking powder, Italian seasoning, salt and red pepper flakes (if using) ; whisk in the milk and egg. Stir in the mozzarella, Parmesan and pepperoni; let stand for 10 minutes.

2. Stir the batter and divide among the mini-muffin cups. Bake until puffed and golden, 20 to 25 minutes.

*I didn't measure any of the cheese, just tossed some in. Also, I never use whole milk. I just used 1% because that's what I had on hand. I also used full sized muffin tins and baked them for about 27 minutes.

Maybe it's puberty

2011-07-26T13:12:00.001-04:00

I think Drew is entering puberty. He is getting more emotional and aggressive lately and the smallest (to me) things seem to set him off.

Yesterday, he had the biggest meltdown I have ever seen from him. Hindsight being 20/20 and all that, I can see what I might have done to help prevent the situation, but it is what it is.

I wanted to go to the store to get some shoebox size storage bins. I had been organizing the toyroom. He acted like he normally does when he doesn't want to go somewhere, but not awful. We got outside and he started screaming his head off. Our next door neighbor was outside and I am sure he was amused. I was not. I got him in the car and he kept saying, "I go home!" over and over. I said, "We will go home in a little bit. After we go to Alco." He went berserk. He was biting the heck out of his hand and arm and screaming at the top of his lungs. He smacked himself over and over. I turned around and went home. I told him he was in timeout and would be in timeout at home. And he screamed, "I want TV!" repeatedly. I told him he was not getting any tv until his timeout was over. Our neighbor was still in his driveway when we got home and Drew was still screaming bloody murder. (ha! that phrase always cracks me up. Like he'd say, "Bloody Murder! Bloody Murder!") Anyway, Blake was upset by Drew's meltdown and I got him in the house before he snatched Drew bald. Drew went right to the timeout chair where he screamed "No TV!" and "Stupid Ididot!" (yeah, that's a new one to me)

Eric called in the middle of this and I explained to him what was going on--blah, blah, worst meltdown ever, I said it started when I went to buy some storage bins. He says, "Why would you go buy more storage bins when we have a ton of them in the attic?" I said, "That is SO not the point of this story." lol.

He checked in on us twenty minutes or so later to make sure everything was ok. We laughed about how that was the first thing he thought of.

Looking from today's perspective, I know I should have prepared him for it first. What I did was throw him some clothes and said, "Get dressed. We're going to the store." Blake, who always loves to go places, hurried to put clothes on and started yelling at Drew to get ready. That got Drew worked up and escalated things. If I'd have prepared him and told him exactly what to expect and for how long, we may have avoided this whole debacle. But then again, maybe not.

Look at the bruises he made on his arms from biting them!

He began biting his arms this summer, so there is usually a bruise or two, but this is shocking. He used to bite his index finger, which got a big callous on it. I feel bad that he's that agitated that he's physically harming himself.

Eric and I are going to St. Louis next weekend for:

THE FRAGILE X WORKSHOP: Behavorial Strategies from Three Points of View

Dr. Marcia Braden, Dr. Ave Lachiewicz and Mrs. Cindi Rogers are presenters. I am really hoping to get some ideas to help him cope.

We have also signed him up for the Arbaclofen drug trial at Rush University Medical Center with Dr. Elizabeth Berry-Kravis. They are targeting anxiety in the study, which Drew has an abundance of.

Drew's Birthday Party

2011-07-21T23:47:00.001-04:00

Drew loved his birthday this year! He has never been too excited about birthday parties and last year we even debated about whether we should have one this year. I am so glad we did.

When he got up this morning, I asked him if he wanted his presents now or later. He said, "Presents now!" He told Eric Happy Birthday, to prompt Eric to say it back to him repeatedly. We went to McDonald's for lunch.

Before the party, Eric gave Drew a deep pressure back pounding at Drew's request. When the guests showed up, he was raring to go. He opened gifts happily.

This was one of the gifts from my mom and dad, a beanbag toss game. Kind of like mini-cornhole.

This was a lunch bag from Eric's mom and dad. They also got him a toy saxaphone and two DVD's.

He got a bow and arrow set from his Aunt Annette, Uncle Ed and Jessica. He really seemed to like it. I think the rubber bands that he has to pull back will give him good sensory imput and may end up being calming.

He got MarioKart from my sister and her family. He opened it so fast I didn't get a picture of it. I don't think he understood what it was really, but tomorrow I will try to teach him how to use it. (after I figure it out!)

We decided to do cake a little different this year. We usually drag Drew into the dining room where he sinks under the table while we sing to him. He gets agitated and retreats to his bedroom. This year what happened was he was in the living room with most of the guests, so I lit the candles and brought his big birthday cookie into the living room. We sang while I was bringing it in. He still put his head down, but at least he was smiling. We all blew out the candles, so he didn't have the pressure to do that. And guess what? He didn't even have to have a sensory retreat!

You might be able to see that he has a smile on his face even though he is not looking toward the cookie or the camera.

While everyone was eating their cookies and ice cream, Drew asked me if he could watch Rango. I said sure and I took a couple more pics of him.

I call it a major success. He went to bed a happy boy and told me that his birthday was tomorrow. I guess he wanted to do it all over again.

Happy Birthday Drew!

2011-07-21T15:12:00.000-04:00

My boy is eleven today! Here's the cake wreck I made for him. It's a giant cookie with a bad decorating job. :) I don't care. He said, "Is that a big cookie? It's for ME? I can't believe it!" lol. Funny boy. As long as he's happy, I don't care.

Not-so-average day

2011-07-15T16:39:00.000-04:00

Most days, the boys and I stay home and hang out. We don't do anything especially exciting. To be honest, I was getting bored and I am sure the boys were too. Around 10:45 this morning, I announced that we were going on a picnic. Now, Blake was all for the idea, but since I hadn't taken the time to prepare Drew for it, he was not really onboard with the idea. I helped him get dressed and into the van we went. We stopped at the store and got some camera batteries and some chips for the boys. Next we went to McDonalds for some chicken nuggets. Then we headed to Anna Community Park. It is where my niece Ashley's baby shower was last weekend and the boys really seemed to like that park. There was a playhouse they especially liked.

We got there and there were a couple other moms with their preschool-aged kids. Blake claimed the playhouse immediately and when the other little kids came, he yelled, "Go away! It's MY house!" Of course, I jumped up and intervened, but you can bet those kids stayed away from Blake and "his" house.

Here's a slideshow of the pics from our time at the park:

After the park, we stopped at the post office where my mom works. We said hello and visited for a little bit.

After the post office, we went to visit Eric's sister, otherwise known as Aunt 'Net (which stands for Annette, in case you're curious) She and my niece Jessica were watching a movie. I think they were surprised to see us. We don't just drop in on people too much. Drew stood outside on her front porch letting the air conditioning out by opening and closing the front door repeatedly. Eventually, he decided it was ok to come in. Probably had to do with the fact that Aunt 'Net had the dog Ginger in her arms instead of letting her run around. She assured Drew that she would keep Ginger away. Blake had no such problems going into Annette's house. He went in and opened the toy closet and made requests for what toys he wanted to play with. I don't even know how long we were there. An hour and a half? It was a nice visit, anyway.

Of course, as soon as we got home, the boys peeled their clothes off and went to watch television. Eric will be home in an hour and we're going to cook out steaks on the grill. Yum!

Made my day!

2011-07-13T10:13:00.001-04:00

I dropped the boys off at camp today and Brian was there, of course. In case you forgot, he and the boys have a special friendship and Brian always has to say, "Arrrrrgggh!" like a pirate. Anyway, when I got there, he handed me a bag and said, "I got something for the boys. You can take it home and see if they like it." He pulled a T-Shirt out of the bag and it had pirate dogs on it. He got one for each of the boys. I was so stunned! What an awesome thing to do! The shirts say, Medeira Beach, FL on them, so I guess he got them while on vacation. Amazing to think that he saw those shirts and thought of my boys. They are the coolest shirts. They are Caribongo shirts which change color in the sun. I took pictures of them before and after.

This one is after I brought the shirt back inside, so the color is already fading a little bit. I can't wait for the boys to see their shirts change colors. I bet they'll LOVE them. Drew said, "Arrrrrggghh!" when I showed it to them at camp and that was before he saw them change colors.

Anyway-- Brian, I think you are wonderful. Thanks for the shirts and thanks for making my day!

*Edited to add pics of the boys in their new shirts!

Blake thought the changing colors of his shirt was cool!

Drew refused to go outside and barely tolerated me taking his picture. I guess he'll discover it next time he wears it outside.

Rambling for your Saturday afternoon.

2011-07-09T16:10:00.001-04:00

Dear Blog,

My kids are driving me crazy! I love them to pieces, but come on! How many times and how many different ways can I answer, "Where I go?" I am supposed to know the answer. Drew will ask me that forty eleven times and I will say, "We're going to the park, to Ashley's baby shower." and he says, "No, tomorrow!" So I tell him we're going to church and he and Blake are going to Grandma's house. And he replies that no, he's going in The Red Car. Yes, that's supposed to be in caps. That's it's name. It used to belong to my mom and dad, and Drew used to love going in it for rides. Only Grandma and Grandpa sold it to Drew's uncle, Tony. After talking about The Red Car for a couple hours, I finally called Tony to verify that he's going to drive The Red Car to the boys' ball game and will Drew be able to ride home with him tomorrow? Uncle Tony confirmed it for me and that settled that issue.

Blake's been grouchy and saying, "I kick you!". Of course, I remind him that we don't kick. And he looks at me like, Whatever. I kick. They keep coming up to me and wanting things and touching and grabbing at me. I understand that they are just anxious to get ready to go to the picnic we're going to, but I am done! On sensory overload. I want to put my headphones on and crank up the music really loud. Oh wait! Eric's home. Perfect timing.

Sweet!

2011-07-08T11:24:00.000-04:00

Doesn't he look so innocent here? I love this pic of him. He's too big to suck his thumb, but he still does it when he's tired and sometimes in his sleep. You wouldn't know that while he's sleeping, he's rebooting his energy and thinking up crazy schemes to further my insanity. lol.

Putting things into perspective

2011-07-07T14:41:00.002-04:00

I am going to the funeral home tonight for the visitation of a little six year old girl who passed away on Independence Day. She had Pompe Disease, which is a terminal illness.

This is the caption in an April newspaper article about Addison:

Addison Berner, 6, of Anna, with her parents Tony (left) and Kelly Berner, wave to well wishers as they go down Anna's Main Street Saturday in a parade that was part of “A Rainbow of Love Day” which is a celebration of Addison Berner’s sixth birthday. Addison and her parents traveled from their home in Anna to the Village Salon owned by Kelly in Botkins. Addison was diagnosed with terminal Pompe disease and her parents consider her time on Earth a miracle. Addison can discern colors and she loves a day out to see bright colors that many take for granted. Parade spectators donned bright fluorescent T-shirts along the way, part of the Team Addison support group.

The Berners are wonderful people. At the left edge of the picture, you can see another girl in a wheelchair. That is their older daughter, Abigail, who has Cerebral Palsy. Blake went to preschool with Abigail and loves toplay with her at an occasional Parent's Night Out. They also have a son who is older than Abigail and another daughter who is the youngest.

I am so saddened by the passing of Addison. I did some reading about Pompe Disease, and most babies who are diagnosed with it never live past their first birthday. Addison's life really was a miracle.

Blaker

2011-07-06T16:26:00.001-04:00

Blake discovered my texting keyboard on my phone. He decided to type our names.

While sitting on the floor with him, I noticed this very disgusting thing I thought I'd share with you. Don't you just love me? He chews on his toes and this is apparently the result. This is the worst I have seen them look. Gross!

A Drew Funny

2011-06-29T16:12:00.001-04:00

I was talking with Drew about Brian, one of his favorite camp workers. (Brian wasn't there last week, so we talked about Brian a lot today)

Me: You know how your name is Drew Meyer?
Drew: Yes?
Me: Well, Brian's last name is Little. He is Brian Little.
Drew: No he's not.
Me: Yes he is. He's Brian Little.
Drew: No, Mom. Brian is big.

I shouldn't laugh...

2011-06-23T16:17:00.002-04:00

Drew is funny. Even when he's ticked off. Especially when he's ticked off. He doesn't want to take a bath, so he gets in the tub, yelling at me that he's NOT taking a bath. (which of course, is exactly what he's doing) He doesn't want his hair washed, so he says, "No hair! See? It's gone! My hair is gone!" Other times, like when I am going to help him get his socks on, he'll say, "No feet, they're gone, see?!" and hide them under a blanket. Another trick he tries is to say things are closed. Like the store is closed. He'll say, "No comb my hair. My hair is closed!" Sometimes, if he doesn't want help with wiping, he'll say, "No butt! I don't have a butt today!" It cracks me up. Get it? Cracks me up? lol.

Danielle

2011-06-22T19:26:00.000-04:00

Lately, I have been spending more time than with my niece Danielle than I normally do. I babysat for her and her brother last week, and this week, Danielle has been riding with us to Vacation Bible School.

Blake adores her. Last week, he had her playing "Little Mama" and she would put him to bed. He had her reading stories to him and singing songs with him.

She is eleven now. I can't believe it! She is very creative. She likes to write stories and make cards for people.

Despite the typical sibling skirmishes she has with her brother, she really loves and looks out for Kyle. She went for a bike ride with him last week and there were some boys who were laughing at Kyle. She was really upset by it. The other day when we were getting ready to leave for VBS, she said, "I feel bad for Kyle being too old to go to VBS. He really loved it."

She was telling me about this girl in her class. She said this girl doesn't have a lot of friends, so she is nice to her. I love that about her.

In the van, on the way to Vacation Bible School today, she was trying to play with her iPod Touch, and Blake kept wanting to see. She patiently showed him what she was doing. But then Blake wanted to hear Old MacDonald from our Barney CD. And she stopped playing with her iPod to make funny barn animal sounds for him. When I glanced in my rearview mirror at them, Blake was looking adoringly at her. It was very sweet.

I am just feeling sentimental, I guess, because I know she is growing up. I just like the person she is and hope she always stays the wonderful, sensitive girl that she is.

Water fun

2011-06-17T13:27:00.001-04:00

Eric pumped up the pool that our niece Ashley gave Blake for his birthday last year. I am babysitting for Kyle and Danielle this week and I promised them if the weather was warm enough we'd play in the water today. Here's a video I made of them first getting in the pool. Drew flat out refused to come outside.

Pizza Hut pizza and breadsticks for lunch

Excited!

Arrrrggghh, Pirate!

Blake running close, but not too close to the sprinkler

Danielle runs right through

See?

Urrrrgggh.

2011-06-17T07:52:00.000-04:00

If you know me, you know that I like my sleep. This is not always compatible with the Fragile X life. At 3:45, I hear a cheerful, "Good Morning, Mommy!" I groaned and said, "Go back to bed, Blake." He asked for some juice, so I told him to go get a a drink of his juice in the fridge then go back to bed. He said, "Ok, Mommy," again, all cheery and awake-like. And of course, as I have blogged a million times, you can probably guess the ending of the story. I got up and down with him forty-eleven times and tried all my tricks, to no avail. Finally, I gave up at 5:00. I have rules, you know. And one of them is that we don't get up for the day before 5:00. And 4:59 is not okay. Anyway, Blake is still be-bopping around four hours later, and I am considering my caffeine options.

Good Housekeeping printed an article by an uncle of a family with Fragile X. I think it is a worthwhile read. Here's the link: The Never Empty Nest

Homemade Bubbles

2011-06-14T12:16:00.000-04:00

I am babysitting for Kyle and Danielle this week. I decided that today we were going to make bubbles. They turned out great and were really sturdy, not popping too fast.

Here's the recipe I used:

1.5 quarts water
1/2 cup corn syrup
1 cup dishwashing liquid
Mix water and corn syrup. Carefully add dishwashing liquid, stirring gently. Bubble juice keeps for up to two weeks.

I made ours up in a Tupperware 2 qt. pitcher. That made it easier to fill the bubble guns and dishes. It is an airtight container, so I can just keep it in the garage until the bubble juice is all gone. The kids had a great time with it.

An idea I got from Pinterest

2011-06-10T09:34:00.000-04:00

I was perusing some of the pins on Pinterest.com and came across a neat idea. Making sidewalk chalk paint. We have a lot of nubs of chalk leftover that are almost too short to write with. Drew wasn't interested, but I roped Blake into the activity.

I started using my meat mallet to crush the chalk on my counter, but quickly discovered that was a bad idea. We moved the project to the driveway for the rest of it.

Blake liked getting in on the pounding action

Improvised paintbrushes. It started raining as soon as we had everything assembled. So we put it in the garage and waited until later to use them.

And of course he put on a different outfit. Like my big toe in the bottom of the picture?


When we were finished, we poured off the extra water and let the chalk bits dry. Next time, we can just add some water to the bowls and do it again.

Unexpected trip to urgent care

2011-06-09T21:39:00.000-04:00

Just back from urgent care. Drew got bit by a spider (we think) and it's all infected. At 3:00, I noticed he had a bite on his leg about the size of a quarter. I gave him Benadryl and didn't pay much attention to it. At five thirty I happened to see it and it was bright red and four inches around the initial spot. I felt it and it was hot. And seeping. Went to urgent care after Eric got home from work. Poor Drew had some difficulty when the receptionist made me stop him from opening and closing the doors. By the time the doctor saw him, there was a red line radiating down from his bite and he had fever of 99.9 degrees. She prescribed some antibiotics and cream. She was very good with him. She sat right down on the floor with him to examine it. When we got home we put a warm compress on it as she instructed and gave him his medicine. I applied the cream and he is now watching Alvin and the Chipmunks. I think it's hurting a bit because he keeps asking, "It feels better?" I did give him some Advil for the pain. Poor fella!

Day camp and the people who run it

2011-06-09T11:53:00.000-04:00

When people talk to me about my boys and Fragile X, a lot of times the conversation ends with me saying, "We've met a lot of wonderful people" because of Fragile X being in our lives. That is a massive understatement.

Family aside--and they are quite wonderful--the people who work for the county board of disabilities are an amazing group. They are there because they care about people with special needs. They aren't there just to get a paycheck or because it's an easy job. It's definitely not that.

We enrolled the boys in the same day camp they were in last year. Last year, when I left Drew and Blake, Blake was hesitant, but Drew wouldn't even go in. He stood by the front doors and that is where I left him. And that's where he was when I got back. As it turned out, he wasn't there the whole time, but it worried me when I got there.

They met new people and reacquainted themselves with people who they knew from preschool. And by the end of summer last year, they were excited when it was camp day.

This year, they were both excited about camp. I was at the registration table outside the doors taking care of permission slips and things. My boys were standing around and not going into the building, when Brian came out. He's a favorite of my boys. Everything is a-ok when Brian is there. Someone told him that the Meyer boys were there, so he came out to get them. Do you think my boys even said goodbye to their mama? Of course not. They skipped off happily with Brian, saying, "Arrrrggghh" like a pirate. I guess that's one of his hoops he has to jump through for Drew. But he doesn't seem to mind.

And I thoroughly enjoyed having from nine to three to myself. When I got back, Drew was in the gym watching a game of Duck, Duck, Goose, which Blake was participating in. And Blake was having a blast! He saw me and was not happy. He ignored me and continued to play. I didn't want to interrupt his fun, since I had arrived a few minutes early. Another one of the workers, Kim, someone I've known since Drew was a baby said hi to me. Then she said, "Your boys are so sweet. They have the best manners!" Of course that made my day. I love the feeling of having my kids genuinely liked. All too often I feel like my kids are tolerated more than liked by people, so it makes me happy when others like them for the cool kids they are.

Family Reunion

2011-06-06T08:54:00.000-04:00

Friday morning, we left for a family reunion in Tennessee. We had the boys all set up with their DVD players. It is a seven hour drive. They did great! There were a couple difficult moments with Drew and his anxiety on the way there and back, but overall, they did great in the van. I am so proud of them!

My grandma rented a guest house at Big South Fork Ranch in Jamestown, TN for all her grandchildren. She and my aunt and cousin live about four miles away and her sons and their spouses stayed with her. Most of our time was spent at the ranch house.

Here's a pic of the house. The ranch was really scenic.

That's my nephew Kyle talking to the horse. He just loves animals.

There's me drinking an adult beverage out of a kids' cup. Classy, right?

This is the side of my family from where Fragile X came. So there were lots of carrier and full mutation people there. It was nice because I didn't feel like I had to apologize for my kids' behavior all the time. And I felt like everyone looked out for them. Of course, the majority of the time, Drew stood by the door, letting people in and out. My grandma tried to get him to keep the door closed at first, but I think she gave up after awhile.

He opened the door for my cousin Natalie a few times, and each time, she said, "Thank you, Honey", so of course, Drew started saying that to her every time he saw her. Sunday morning, he peeked into her bedroom and said,"Good Morning, Honey," to her.

He also latched onto my uncle Rich. He is a grandpa himself. Drew asked him many times, "What's your name?" and my uncle would tell him. I told Rich to say, "Drew, you know my name. What is it?" Drew just likes to have a conversation starter and "What's your name" seems to be it. Here's a pic of them on Saturday morning:

One of Blake's favorite things to do was to play with the pool table.

My cousin Gail's husband Jason played with him.

My cousin Robbie was there. He also has Fragile X and my nephew Kyle really likes him. He was sitting next to him on Friday night and Kyle asked if he could feel Robbie's mustache. Rob reluctantly allowed it.

Don't they both have great dimples?

There were so many more cousins and so many more stories to tell, but in true Kristie fashion, I am going to end it here with a link to more pictures.

Vagedes Family Reunion

Cousins

2011-06-02T22:18:00.001-04:00

I watched my sister's kids yesterday and today. They also have Fragile X. Blake adores his cousin Kyle. One of Kyle's obsessions is bike riding. He rode his bike up and down the street yesterday afternoon and Blake followed along with his Little Tikes Cozy Coupe (we call it his Fred Flintstone car since he propels it with his feet) He would only get as far as the neighbor's house and Kyle would be all the way down the street and back by that time. It was funny.

Another of Kyle's obsessions is basketball. He brought his Harlem Globetrotters basketball with him and he went out to play. Of course Blake had to go get his basketball and join him. I was sitting on the front step and listening to them interact and decided to grab my camera and make a video.

Kyle starts out saying, "The Claw! It's behind you!" which is what my dad always does with the boys. When Blake doesn't react to that, he switches to saying, "The Thumb!" which is what my dad says when he doesn't feel like doing the full-fledged "Claw". It's silly, but Blake knew exactly what Kyle was talking about. Here's the short video.

Obviously, I didn't pick out Blake's clothes today. He rejected the matching shirt and shorts for a more satistactory, if crazy combination.

Here are a few pictures from the past couple days with the kids:

I got out some scraps of material I had and let Danielle sew something. She decided to make a little bag for her ipod touch. I thought it turned out great. She did 95% of it by herself.

The Ishner is in!

2011-05-28T18:22:00.000-04:00

Last Sunday Eric installed Blake's new air conditioner. Blake was so excited and wanted to help him.

First you need a toolbelt

Then you have to wash the windows..

Next you have to measure it..he proclaimed it to be four inches.

And of course you have to help Daddy make a shelf

But safety first! Don't forget the protective eyewear...

Then we have to measure the wood

and dance and hand-flap while Daddy puts the "ishner" in.

Voila!

Mr. Self-Sufficient

2011-05-23T17:49:00.000-04:00

Blake asked me for a grilled cheese today. I said, "Sure, in a little bit." The phone rang and it was my mom. I talked to her a few minutes while I washed the window in Drew's room. After the call was over, I hung up and went into the kitchen. This is what I found:

So, either he was reeeeeaaallly hungry or he was going to make one for me and Drew as well. I'm just glad I got to him before he decided to get the skillet out.

We've almost made it

2011-05-22T15:37:00.000-04:00

Four more days of school and we've survived another school year. I am so proud of my boys!

This year was especially challenging for Drew. He transferred from a small private school for kids with special needs to our public school with 450 kids. He conquered his fear of the stairs and now goes up and down two flights several times every day. He goes through the lunch line, tells the server what he wants and sits in a crowded cafeteria while he eats. He has gone on several field trips with his grade and enjoys gym class, where he now jogs laps if he's not into what they're doing. He knows many of his classmates by name and has adjusted quite well to his new school. He had a new teacher, Mrs. Stueve, who was wonderful with him, and his longtime aide, who has endless patience with him.

This was Blake's second year at school and he went into it with as much gusto as he does with everything. He has met most every goal we set forth on his IEP. One thing we're especially pleased with is his increase in computer skills. At the beginning of the year, he didn't have a lot of computer skills, but now he is great on the computer. Many times I am amazed at what he has learned. He went to his first classmate birthday party this year, a karate themed event. He thought it was great fun. He loves being with his classmates and always encourages them to "Come on, guys!" and "Come with me!" No social anxiety there. :) At one point in the year, he needed a finger skateboard so he could send it down the playground slide like the other boys at recess.

I call the year a success. We're very proud of our boys!

Oh happy day!

2011-05-18T14:19:00.000-04:00

Blake is going with Eric to get a haircut tonight. After that, they're going to Lowes to get Blake an ishner! What's that, you ask? It's Blake's word for air conditioner. He's the only one of us who doesn't have a window air conditioner in his bedroom. Eric didn't want to put one in Blake's room because his window is in the front of the house. But it was so hot and Blake was so miserable last summer that Eric changed his mind and took pity on the poor fella. It'll be nice if we actually have weather soon that's warm enough to use an ishner.

IEP progress

2011-05-16T15:24:00.000-04:00

Some of Blake's Technology goals on his IEP is to do a simple internet search, to learn how to use the cut and paste function and typing.

He searched for and found this photo, cut and pasted it into a word document and wrote sentences about it:

I have to say, I love the sentence "Baby Fangface eats a wormball." lol.

Anyway, I am so proud of his progress on the computer this year. When school started, he really didn't have any computer skills.

Pretty Sweet!

2011-05-11T16:11:00.002-04:00

I got this email from Drew's teacher today:

Hi there!
I just wanted to say how sweet Drew was today. He came back from religion and gave me a “flower” with a great big smile on his face! It was so sweet. He said, “This is for you Mrs. Stueve. I picked you a flower!”. Yes, it was a dandelion, but still sweet!

What a boy!

Tuesday Randomness, List-style

2011-05-10T15:52:00.000-04:00

1. Blake had a class field trip today. They went to the town park and ate sack lunches and played most of the afternoon. They went to the Dairy King before going back to school. Blake came home hot and sweaty and had a lot of fun. He also had a big goose egg on his eyebrow. I asked him what happened, and he said, "A bug did it. I catch him." Thankfully. the weather held out and didn't rain, though it looks like it could anytime.

2. Eric is away on business this week. He only left yesterday, but Drew is mildly obsessed with wondering when Daddy's coming home. I think he misses his gargling. (among other things)

3. Drew is looking for his drumsticks, his most prized possession. I have been trying to teach the kids about prayer, so whenever they can't find something, I suggest we ask Jesus for help. At first, they didn't like the idea and said, "No, YOU help." But whenever we ask Jesus for help, we almost always find what we're looking for. Then, when we find it, we remember to thank Jesus for his help.

4. I have to work early tomorrow. I am a little nervous about it. Not because I am nervous about cooking for my coworker, but the last time I did it, Drew was very upset by the change in his routine. Eric's mom is coming over to get the kids off to school, so hopefully they'll be ok with the change.

5. The boys have 12 more days of school. And I have 13. I am so stoked about it! It's funny because I am always glad when school's out, but I am always glad when it starts back up, too.

6. We enrolled the kids in summer camp again this year. It is on Tuesdays from 8-3. I haven't mentioned it to them, yet, but I know they will be excited.

An Afternoon Snack

2011-05-04T16:06:00.001-04:00

I made some donuts with my electric sandwich maker. They are not shaped like a traditional cake donut, but they are yummy!

It took a minute to convince the boys that they were actually donuts, but when they tried them, they decided they like them.

Here's the recipe, in case you want to try it:

2 1/2 cups all-purpose flour
1/2 cup white sugar
1 tablespoon baking powder
1/2 teaspoon salt
1 teaspoon ground cinnamon
1/4 teaspoon ground nutmeg
1 cup milk 1 egg, beaten
1/4 cup butter, melted and cooled
2 teaspoons vanilla extract
2 quarts oil for deep frying

1/2 teaspoon ground cinnamon
1/2 cup white sugar

1. In a large bowl, stir together the flour, 1/2 cup sugar, baking powder, salt, 1 teaspoon of cinnamon and nutmeg. Make a well in the center and pour in the milk, egg, butter, and vanilla. Mix until well blended. Cover and refrigerate for 1 hour.

2. Heat oil in a deep heavy skillet or deep-fryer to 370 degrees F (185 degrees C). On a floured board, roll chilled dough out to 1/2 inch thickness. Use a 3 inch round cutter to cut out doughnuts. Use a smaller cutter to cut holes from center. If you do not have a small cutter, use the mouth of a bottle.

3. Fry doughnuts in hot oil until golden brown, turning once. Remove from oil to drain on paper plates. Combine the remaining 1/2 teaspoon cinnamon and 1/2 cup sugar in a large resealable bag. Place a few warm donuts into the bag at a time, seal and shake to coat.

Ok, so here's the changes I made. I didn't use oil at all for frying. I mixed the batter as directed, then put a small amount into each well of my sandwich maker. I didn't refrigerate for one hour. After removing from heat, I sprayed them with Pam then tossed into the cinnamon sugar blend. You could brush with melted butter if you didn't want to do the Pam.

Anyway, they would probably be better prepared as directed, but they were pretty yummy as I made them!

I can't think of a title for this.

2011-05-02T16:58:00.000-04:00

So, a friend stopped by my house today. I was sitting on the floor by the front door with my e-reader waiting for the boys to be dropped off. I let her in and we started talking.

She noticed that I already had their snack ready and the television was on to Pinocchio. I told her it just makes things easier. I didn't see the boys' car pull in the driveway. Carol, Drew's aide started opening the door to let Drew out. I ran out to help her, but already Drew was upset. He was locking the door and wouldn't get out. Blake was yelling, "You stop it, Mommy!" and ran into the house. Finally, I got Drew out and he ran to the house and slammed the door in my face. She asked, "Is he going to lock the door?" I said, "Maybe. He does sometimes." This time he did not.

We went in and Blake ran to his room and took off his clothes. Also, he kept yelling at me to stop it. Drew said, "No snacks, no cookie, no milk!" and moved the snacks into the kitchen.

I think my friend was bewildered by it all, because she said, "God love you," several times. :) I told her it was not uncommon, but today was a little worse than normal because she was here. She apologized for disrupting their routine. I assured her that she was fine, that the boys have to get used to having things change sometimes.

After a few more minutes and a few more displays of maladaptive behavior, shall we say, she left.

Honestly, the kids are like that a lot of days. And I can't always predict what they'll be like when they get home. It makes me feel like a bad mother to have other people witness them when they act like that.

It's good and it's bad, I guess. I suppose it is good for others to get a real glimpse at how our lives are, but it's bad when I am thinking more of myself and how I look to others when they are seeing how our lives are.

Birthday Dinner

2011-04-29T14:10:00.000-04:00

Blake's aide took him to McDonald's to celebrate his birthday. She emailed pictures to me today. Here they are.

Think he was happy?

She also brought her daughter and grandson. Obviously that was ok with Blake. :)

Thanks for sharing the pics with us, Julie. And for taking such good care of our boy.

Blake's 8th Birthday

2011-04-27T07:37:00.000-04:00

Blake was happy to see his Grandpa Meyer!

He got more Thomas trains for his collection.

He was happy about the cake, but when it came down to the singing, he had to hide.

Trains!

He was so excited about his birthday. It was cute. He offered his new shorts to his grandpa. He was quite possessive of all the toys he got, though, saying, "It's mine!" I think he remembered to say thank you to everyone before they left, too. It was a nice day. He had the day off school for Easter Break, so yesterday they celebrated his birthday at school. Today after school, his aide is taking him to McDonald's for another birthday celebration.

Happy Birthday Blake!

2011-04-25T07:31:00.000-04:00

Happy Birthday Blake!

I can't believe my baby is EIGHT!!!

Blaker

2011-04-22T07:56:00.000-04:00

I find that I talk about Drew a lot on my blog and Blake doesn't get blogged about as much.

When he was younger, he was mentioned more often for all the crazy things he got into or did. Drew has some more challenging issues than Blake for the most part, so I guess the squeaky wheel gets the oil, as they say.
Anyway, I want to talk about Blake today. He is such a sweetheart. Every morning, he says, "Good morning, Mommy! I love you." And of course, he also says, "Look at my shoes!" and points to his bare feet. Funny boy.

He loves trains. Thomas the Tank Engine and Chuggington are his favorites.

He is very self sufficient. If he wants a snack, he always attempts to get it himself first, and ask for help second, if he is having trouble. He microwaves his own Pop-Tarts, and baked potatoes in the microwave, if he takes the notion. He doesn't always put in the right amount of time, but he knows what to do.

He still crams himself into his Little Tikes Cozy Coupe and scoots around the back porch with it.

He loves his brother but hates to share the computer with him. He loves to watch Youtube videos.

He might yell, "You stop it!" in one breath and "I love you" in the next.

He's a packrat. We joke that he's a hoarder. When we go places, he brings his backpack and his two purses jam-packed with stuff.

He still likes to be snuggled at night. I rock him often, though he's all arms and legs.

He's a bright ray of sunshine in our lives and we are so blessed to have him.

Ready? or Not Ready?

2011-04-20T17:02:00.006-04:00

Awhile back, I had a status update on Facebook that went something like this:

To all my neighbors--those screams coming from my house were from Drew. It sounded like I was beating him, but I was just cutting his toenails. :)

A very smart lady named Cindi Rogers responded. She said:

Kristie--remember the "ready, not-ready" technique. It takes extra time and patience, but it's what has helped us a lot. Not to say that it's perfect...far from it, but it's a lot more cooperative and less physical. Also, we always ask "...ok, since your ready, what do you want to talk about?" This is funny cause Joe almost always wants to talk about Red Robin! Hahahaha. Thinking about food when cutting toe nails....yuck! LOL

I tried the ready, not-ready technique invented by Cindi when I wanted to cut Drew's fingernails the other day. I said, "Drew I want to cut your fingernails. Are you ready?" He said, "No fingernails!" I said "Oh, so you're not ready? Ok. Well, let me know when you are." I left him and a couple minutes later he came up to me and said, "No feet?" I said, "No feet. Just your fingernails need cut." He said, "Ok, I'm ready." I about died! Well, not really, but I was pretty surprised.

I got the scissors and knelt down in front of him. He again asked, "No feet, right?" Again I assured him that we weren't doing his feet. I forget what we talked about, but it went smoothly. Awesome.

Toenails are always more difficult for him, but they really needed done. I said the same thing to him today as I did about his fingernails the other day. He reacted strongly in the negative. I tried to be nonchalant and said, "That's fine. Let me know when you're ready."

He started crying and getting worried about it. I said, "If you're not ready, it's ok. Just tell me when." After a few false starts and offers from me to stop, we got it done with only a few tears shed. No screams.

I told him I was very proud of him. To which he replied, "I am very proud of you too, Mom!" Funny guy.

Anyway, thanks to Cindi Rogers for reminding me of the Ready, Not-ready technique. It worked! He was a lot calmer and no one was injured in the process. lol.

A speaking engagement

2011-04-19T08:21:00.001-04:00

Eric and I went to Edison Community College to speak to a class of fifteen future teachers about Fragile X Syndrome and what our lives are like. The class is called "Teaching Exceptionalities". It is taught by the boys' former infant teacher at Shelby Hills, Roxanne, who has become a friend to me over the years.

Besides us, there was a couple from our town who have a daughter with Spina Bifida and a couple with a son with Trisomy 23.

Funny how I know Fragile X inside out and upside down, but felt the need to check the National Fragile X Foundation's website for anything I may be forgetting. I got the most up-to-date statistics and was good to go.

We gave an overview of FXS, and even drew my family tree on the board for the class to get a better understanding of how the gene is passed. We told our story of being diagnosed and later of our school experiences. You could tell that some of the students were actually interested in what we had to say and a couple of them asked some really good questions. Some text messaged the whole time. I guess that's to be expected. We were glad some were interested at all.

In the process of listening to the other couples speak about their kids and their situations, I again discovered how much we have in common. Frustrations by our child's limitations, but determination to make the most of our child's abilities. And a desire to have our children fit in with their peers. There was talk from all of us on things that were socially appropriate.

At the end, Roxanne asked us to give these future teachers some advice. From all of us:

1. Be sure to tell us the good things that our child is doing. Parents with special needs kids are often told only the problems and that can be frustrating.

2. Understand that we just want what's best for our child and helping them fit in with their classmates is important.

3. Respect our knowledge of not just our child but of their disability. Don't make assumptions based on your book knowledge of a particular disorder.

Something I forgot to mention, but wish I had was to remember that they are kids first, and foremost. See them for who they are and not just what they can't do.

Anyway, it was an enjoyable evening. Who doesn't like talking about their kids?

Happy Birthday Sissy!

2011-04-15T15:58:00.002-04:00

Happy 40th Birthday Kelly!

Our first real social story

2011-04-11T14:12:00.001-04:00

For years, people have been telling me to write social stories for the boys to help them get over anxieties about social situations. For years, I have been thinking I couldn't make a decent social story. I worried about following the "rules" for them. Ever since I brought Drew home early from school when he was having seizures, he's been thinking I am going to pick him up early and rescue him from having to work. I definitely stand my my decision to pick him up that day, but it had some consequences. Anyway, over the weekend, I made a book for him about going to school. And I illustrated it. lol. The thing took me about ten minutes to make, so obviously it could be prettier. Not the point. We've read it many times, and Drew likes to point out the little stick people and who they represent. I hope that even if it doesn't help right away that in time he will be helped by it. So, here it is, in all it's glory:

His teacher told me that he cried for a little while when he got to school, but not nearly as long as before. Maybe the book is working! We'll keep reading it and see if it gets even better.

Maybe a solution?

2011-04-09T14:21:00.000-04:00

Drew is always asking if he has to go to school today. Or what about tomorrow? He understands the concept of the calendar, so I made one for April, and marked whether he has school on a given day. Then I tried to think of a way to point out the actual day without making it more visually confusing than it already is. So I took a magnet and cut it out to frame whatever day it is. Then we'll switch it every morning and look at whether he has school that day or not. Not sure how well this will work, and it may need tweaking (possibly reducing the calendar to one week at a time? Not sure.) I'll let you know how it goes.

Saturday

2011-04-09T13:23:00.000-04:00

I think we're back on the road to health. I am still being cautious about what I eat, in case I get the stomach plague that Blake had. Drew hasn't had anymore seizures since Tuesday night.

We were supposed to be going to Parent's Night Out tonight, but Blake still had 102.1 fever last night, so I canceled our reservation. I am bummed, because it is the last one of this school year. No more until September or October. But, I'd hate to chance getting someone else's child sick. At least we hadn't mentioned it to the boys, so they aren't disappointed.

It seems that since I brought Drew home from school early on Monday he thinks I should pick him up early every day. He's been crying for an hour to an hour and a half every morning, saying, "Call my mom to get me?" I guess eventually he gives up and does his work. I am sure his teacher and aide love that. Not to mention his other classmates.

I've discovered a website called KidsMovieLand.com which has a great variety of kids shows on it. Just a tip for those of you who have kids who like to watch videos on the computer.

It is 5 o'clock

2011-04-08T04:57:00.000-04:00

And I guess Blake was getting an upset stomach after all. He's been up all night throwing up. Poor guy is miserable.

2011-04-07T16:33:00.002-04:00

Sometimes I miss the obvious. I was all concerned that Blake had a stomach ache last night. This afternoon, I noticed he was really congested, and I was told him I was going to give him some cold medicine. He said, "Make my ear better?" In my litany of "Does this hurt?," "does that hurt?" I never questioned whether his ears hurt! So, I asked him which ear hurt and he pointed to his left ear. I guess when he was answering no that his throat didn't hurt, he never thought to mention it was his ears all along!

Thursday

2011-04-07T10:50:00.000-04:00

Yesterday, Drew went to school. His aide said that he did ok, but seemed to run out of steam as the day went on. She said he had increasing difficulty with transitions also. When he got home from school, he snuggled up on the couch with a blanket. Then he fell asleep. That rarely happens around here. I looked at him and his face was flushed. I checked his temp under his arm and it was 101.5 before adding the degree. Yikes! No wonder he was losing energy as the day went on.

I had a hair appointment and Eric stayed home with the boys. I called him from Wal-Mart to see if he needed anything. He said no, but he had to go because Blake was crying for me. That's not a regular occurance around here, either. So, I got home and Eric was rocking Blake. We tried putting him back to bed and he kept crying, wanting to be held. He was groaning a lot and asked to go to the bathroom. We wondered if he had an upset stomach. He said that he was fine. Not a reliable report, though, since he kept crying.

Eric had to go on a business trip today, so he finished packing and we went to bed. Blake kept crying and calling for me. I'd get up, comfort him, take him to the bathroom, where he'd sit on the toilet for a second and say, "I go back to bed," and I tuck him back in. Or I'd rock him. This went on all night long. Finally around 5:30, he fell asleep.

Then Drew woke up. He seemed pretty ok, and I planned on sending him to school. Eric left for his trip. Drew ran to the bathroom and had diarrhea. So much for sending him to school. So, we are all home today. Blake is congested today, but other than that, he doesn't seem to have an upset stomach or anything. Not sure what to make of last night.

Hopefully, we are headed back to health. Drew hasn't had a seizure in over a day now.

Drew Update

2011-04-05T08:07:00.002-04:00

I was in contact with Dr. Berry-Kravis several times yesterday about Drew. She said ideally, we would do an ambulatory EEG where they hook him up to a portable EEG and push a button everytime we think he's having a seizure. Of course, Drew would never tolerate it. He'd either rip everything off or push the button like mad. Or both.

Anyway, since we never had a lot of success with seizure meds in the past, Dr. B-K suggested we up his prozac dose before attempting the seizures drugs again. I did that this morning and he does seem less anxious. We'll see how the day goes.

***Morning Update***
His teacher emailed me this morning and said that Drew cried for about an hour or so this morning, but was able to settle down and get some work done.

I saw him at lunch and he seemed ok. His aide said it was much better than yesterday.

***After School Update***
I got this email from Drew's teacher this afternoon:
Hi there!
I wanted to give you the rest of the day update. After Drew realized that we were not going to give in to the TV or calling you, he worked great. It took him a little to adjust to the routine again, BUT this was BEST that I have seen him be in the afternoon since the beginning of the year. He was happy, asking to do work, and completed 2 task INDEPENDENTLY. This is something that he has never done. Great Job!

It's that time of year

2011-04-03T20:33:00.002-04:00

Springtime is hard for Drew. He started having seizures the year he was six. It began in May and raged on all summer long. We went through several doctor's appointments, a CT scan (nightmare!) different anti-seizure medicines, and so forth. The anti-seizure meds made him lose control of his bladder. He was already toilet-trained at the time, so it was highly anxiety producing for him. We ended up taking him off the meds and just dealing with the seizures. It got better over the fall and winter, and he only had one or two seizures, and that was when he was sick.

The following spring, around April or May, they started up again. He has allergies, so we made the possible connection between the time of year when his allergies are at their worst and the increased seizure activity. We talked to Dr. Berry-Kravis, his pediatric neurologist/Fragile X specialist and she said she's heard of all kinds of bizarre triggers for seizures. She said she couldn't rule that out as a possibility. We started giving him Claritin every night, and it seemed to help with the seizures. The thing we noticed is that they were shorter than the year before and we could sometimes stop them from going into full-blown seizures.

I think the whole thing is unsettling to him and it causes his anxiety to spike. Last week on Tuesday at school, he was on the computer and started screaming and crying that the computer was broken. He was slapping himself and was very upset. He cried for 45 minutes or so and started gagging and acting like he was going to throw up. When it was over, he told his teacher, "I'm better now!" which for us, is a tell-tale sign that he had a seizure.

Drew has partial-complex seizures. From epilepsy.com:
Some partial-complex seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach. Then the person loses awareness and stares blankly. Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums). Less often, people may repeat words or phrases, laugh, scream, or cry. Some people do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.

This is how his seizures usually happen: If we are in the room with him, we may notice him rubbing one side of his face or picking at it (aura?). A minute later he lets out some blood-curdling screams. He will start to drool and hold his mouth in an unnatural position. He cries and says something like, "Mommy!" or "Watch a movie," repeatedly. His speech is slurred. Sometimes he'll ask for a tissue. Only when you get him one, he will scream and push it away. If it is a bad seizure, he will gag or even throw up. Sometimes they cause him to have a loose bowel movement. He almost always slaps himself and picks at his chest when it happens. And when it is over, he will almost always say, "I'm better now!" like he can't believe it.

I hate it for him. Heck, I hate it for all of us. Yesterday he did this, and Blake sat in the other room and cried. Eric had to go comfort him while I dealt with Drew. It is stressful for all of us. Drew's anxiety is really bad during this time of year. He doesn't want me to leave, even for a few minutes. This week, I had to go to work at 7:30 every morning to cover for a coworker who was having surgery. Eric had to get the boys off to school. Of course he is capable of doing this, but Drew was upset by the change in routine. And add in the recent return of the seizures, he's in a constant state of fear.
He is very clingy and easily upset and probably will be until June. Blech. Pray for our sanity! :)

An interesting way of doing things

2011-03-29T15:52:00.000-04:00

When you have kids like mine, you have to be adaptable. We were working on Blake's homework and he was to pick the right word from a grouping of three. He wasn't very attentive to the task and he got the idea that Percy the train could pick the right word. Genius!

This worked rather well. For awhile. And then of course, he lost interest. So I gave him the camera and told him to take a picture of a particular word. This also kept his interest until the task was over.

Why I won't ban Barney in my house

2011-03-27T18:25:00.000-04:00

Some people ban Barney the Dinosaur from their home. Because he's annoying, they say. I don't find him annoying. What I find annoying is all the shows on television which teach my kids to be rude and demanding and disrespectful to adults.

Barney is a pleasant guy. He is an optimist. He always looks on the bright side of a situation. I admit that the older episodes have cheesy acting, but overall, the theme is good. Be nice, share, sing songs, use your imagination. How is that bad?

My kids may be old for Barney by some people's standards, but I say as long as they're interested, why not allow them to watch it?

I love Special Olympics

2011-03-25T15:42:00.001-04:00

My nephew Kyle has wanted to be on the school basketball team for ages. Kelly and Tony tried to explain to him that he probably wouldn't be able to be on the team, but maybe he could be a helper, i.e.,waterboy. He didn't like this idea and reaffirmed that he wanted to be on the team.

Someone told them that Special Olympics has a basketball team. He joined the team this year and absolutely loves it. His coach is phenomenal. All the people who help with the team are great.

He really had no idea about the rules of the game going into it, so he has learned a lot. There have been plenty of times when he's attempted to make a basket for the wrong team. (like his aunt Kristie did in seventh grade basketball) I think as soon as he got the ball in his hands, he went for the basket that was closest.
I went to his game last night and guess what? He made a basket! For his own team! He was really proud of himself. I was proud of him too. Kyle is well-known for his high fives and gives them out liberally. However, he gives really hard fives. It is funny, because when he started the team, he'd high five his teammates, they'd be like, "Ow Kyle! You trying to break my arm off?!" Now they are used to it.

The cool thing about Special Olympics is how supportive everyone is. The crowd cheers whenever someone scores, regardless of whose team made the basket. Last night a player fell down. It took him a minute to get back up, (I think he liked the attention, really) and when he did get up, everyone cheered for him. Kyle got off the bench and went over to him, saying, "Are you ok, buddy?" When the guy said he was ok, Kyle gave him a hug and told him to take it easy. It was too funny.

Here are some pics of last night's game.

I hope that in a couple years, my boys will be able to participate in Special Olympics in some way.

Slightly disturbing

2011-03-21T18:01:00.000-04:00

His flexibility is unreal. He sits like this for fun.

Yay! It's Friday

2011-03-18T08:07:00.000-04:00

Today is the first graders' Parent Lunch. Since I am a lunch lady, I'd have to take the day off work if I want to eat with Blake. Crazy, huh? Anyway, Eric is going to eat lunch with Blake today. Drew heard Eric talking to Blake about it this morning and became a little concerned about whether Eric was eating with him as well. He didn't really want him to. He'll probably bug Mrs. Hoehne about it all morning. "I not see Dad at lunch, right?" and "He not be there." Not that he doesn't like his dad, it is just too much stress to have your dad show up where he doesn't belong. We all have our designated spaces in Drew's life and that doesn't include Eric showing up at work. Just like it doesn't include seeing teachers in Wal-Mart or whatever. It's just not right.

Blake was pretty ok with having Daddy come to lunch with him. They're having cheese pizza and breadsticks.

It feels like spring outside! Yeah!!!! It is supposed to rain today, but the high temperature is supposed to be sixty five degrees. Woohoo! I love when it gets warm out.

The lady Redskins won the State semi-final last night in basketball. They played in Columbus. I imagine they got home late, and thankfully (for Drew) they didn't come through town with sirens blaring. The State final game is on Saturday. I am sure we'll have sirens then, whether they win or not.

Have a great day!

Not quite the celebration it should have been

2011-03-13T10:11:00.001-04:00

Last night was Parents' Night Out. The boys went bowling and had pizza. Eric and I and Kelly and Tony went to Outback Steakhouse for dinner then went to Club 55 for drinks (or in my case, drink) We got home around ten fifteen and put the boys to bed. Blake went to sleep instantly, but Drew got up a couple times. At eleven, Eric and I were ready for bed, I remembered that I hadn't given Drew his Claritin. I went in his room to give it to him. He usually doesn't even wake up when he gets it. It's a fast melt. Well, when I got in there, I started hearing sirens outside. The girls' basketball team won their tournament game and were being escorted around town by the fire department. They were driving like, fifteen miles an hour and there was a whole trail of cars honking and waving. I normally go out and wave to the team to cheer them on. It's kind of a fun thing the town does to support our kids.

Well, the sirens and lights woke Drew up and scared him something fierce. He was screaming and crying. I tried to calm him down by saying they were celebrating the Redskins winning, but he couldn't listen to me. He begged to get up to watch television. I wasn't going to let him, but decided that in the long run it might be better to let him get up for a few minutes than to try to convince him in the dark while sirens went off through every street in town that everything was okay.

So, he got up and I put an On Demand show on for him. Maybe not the best choice, Fireman Sam. At least the sirens on the show drowned out the real sirens. After the show was over (ten minutes) I put him back to bed. He started crying again. Eventually he came in our room and asked to get in bed with us. That never happens! He fell asleep instantly and started snoring. I went to transfer him back to his own bed and he woke up crying again. I ended up giving him a Melatonin and staying with him until it kicked in. Whew! What an end to the night!

Thinking of my Grandma Hilgefort

2011-03-06T11:29:00.001-05:00

I made some pancakes this morning. Not just any pancakes, but "Grandma's Pancakes".

When we were kids, my sister and I would stay overnight at my grandma and grandpa's house. And that meant her pancakes for breakfast. She made them in a big speckled bowl and never measured the ingredients. She made them in her electric skillet and we always made a big deal when the pancakes were kissin', which was when the batter from one pancake ran and touched another pancake. We would fill the bathroom sink with hot water and put the bottle of syrup in the sink while Grandma made the pancakes. We could have used the microwave by that time, but I guess that's how it was always done before microwave ovens.

When Kelly was older, like fourteen or fifteen, she decided she wanted the recipe. Grandma told her there was no recipe, that she just put the ingredients together. That was no way to figure out a recipe, though. I remember Grandma trying to get out the right amout of flour and Kelly stopping to measure it before it went in the bowl. Grandma thought the whole business was "queer" and the pancakes didn't turn out that good. We gave up, figuring we'd never know how to make them when Grandma was gone.

Fast forward to my bridal shower. My grandma had passed away about six weeks prior. Everyone was asked to bring a recipe for me. My cousin Julie brought a recipe called "Grandma's Pancakes"! I couldn't believe it! Apparently her mother, my aunt Marian had come up with the recipe through trial and error. I couldn't wait to try them.

They turned out exactly right! So now I make Grandma's pancakes and think fondly of my sweet grandma, who wanted me to sit on her lap, even when I was twenty years old and afraid I'd break her.

Here's the recipe:

1 cup milk
1/2 teaspoon salt
1 big egg or 2 small eggs
1 scoop flour
1 teaspoon baking powder

Mix ingredients in blender. Batter should be thin. Fry in hot skillet.

Now, usually I do make them in the blender, which is not the authentic way of doing it. And I have figured that 1 scoop of flour is about 3/4 cup. And to make them truly like Grandma's, they have to be fried in lard. But I don't keep lard in the house, so I usually use a spray of Pam. Though when you do that, the edges don't get crispy like Grandma's did. When I made them today, I used a big bowl to mix, Crisco shortening and a large serving spoon to transfer the batter to my electric griddle. Just to feel more like Grandma.

More flu? or something else?

2011-03-05T07:20:00.000-05:00

Eric had his wisdom teeth removed yesterday. He is recovering pretty well. He hasn't eaten much, just some mashed potatoes and ice cream.

After school yesterday, Drew was sneezing a lot and had a runny nose. I gave him a benadryl. He got sleepy from it, which is unusual, but he stayed covered up on the couch for a long time. He was warm, so I took his temperature. 100.5. Not that bad, but still fever. After a couple hours on the couch, I put him to bed. It was only like, six thirty, but he was sick. He woke up at eleven and went to the bathroom. I gave him more medicine and he went back to bed. Some time during the night, he woke up crying in that sick, I'm-going-to-throw-up way. I got him up and ran him to the bathroom. He made it to the toilet for once. That never happens. He went back to bed and so did I.

About 3:15am, our doorbell rang. Really. Eric got dressed and went to see who was there. It was a sherriff, who said they got a 911 call from our number and there was no one on the line. When they tried to call us back, they got a busy signal. So they came out to make sure everything was okay. This happened a few weeks ago, too. Only then they were able to get ahold of us by phone. Eric checked the phone last night, and sure enough, there was static on the line but no dialtone. Not sure what was up, but he thanked the officer and went back to bed. The phone rang about a half hour later and I answered it. There was no one on the line, but there was a dialtone. So, I don't know if the phone was making random 911 calls or what? Weird.

This morning, Drew slept until 5:30, pretty good for sleeping so long. He watched Pinocchio on DVD for awhile. Around 6:45, he started whining and crying. I took him to the bathroom and tried to get him calmed down. He went back to the couch and covered up. I was with him and suddenly, he started throwing up again! I grabbed his blanket and tried to catch the puke with it. I had tried to force him to go to the bathroom, but he wouldn't budge. Eric came out and picked Drew up and brought him in the bathroom, where he threw up some more. After that was over, I had to clean up the love seat, while he sat on the couch crying and saying, "Did you get it? Is it all clean now?"

We've all been taking Tamiflu since Monday when I took Blake to the doctor. So I am wondering if this is an altogether different bug. When Blake had it, he didn't get sick to his stomach. Then again, Drew is a little more of a puker than Blake. I don't know, but I hope it is short-lived. He is happy now and chattering away about his movie.

Poor Blaker!

2011-02-28T21:17:00.002-05:00

My baby is sick. Yesterday at my mom and dad's house, he didn't seem to feel well. We went home and he took a nap with me. Later, I checked his temp and he cried pitifully the whole time. It was only 99.9 under the arm, but you could tell he didn't feel good.

He didn't eat much of anything at all yesterday and went to bed a little early. He woke up a lot during the night crying for me. He was burning up during the night, though I didn't want to upset him by checking it with a thermometer. So I gave him some more Advil and put him back to bed.

He woke up several times during the night and got up for the day at about 9 this morning. This is what the poor guy looked like:

I called the doctor's office and they couldn't get him in until 3:20. He basically stayed wrapped up in a blanket on the couch most of the day. Unless he wanted to be held. He drank gobs of water, though he ate absolutely nothing. He cried when I got him ready to go to the dr. Drew got home from school and didn't want to go to the doctor's office, either. He cheered up a little on the way.

We got there ten minutes before our appointment time. You can see how Blake felt.

Drew stayed in the vestibule of the office and held the door for people as they came and went. We were only in the waiting room ten minutes before they called us back to our room. Blake got nervous right away, as he doesn't like to get checked out. He weighs 51.5 lbs and is 50 inches tall. He had a fever of 104.5! As soon as the nurse left, Drew started pretending he was the nurse, getting all my vital info.

He said, "What's your eyes? Lemme see your ears. Blake is sick?"

When I answered him, he would go, "Hmm, ok." and scratch on his paper. lol. Blake went and hid on the floor on the back side of the exam table.

We waited for over an hour in the exam room. Believe me, it got a little crazy in there. Drew continued to pretend to be the doctor and wanted me to say, "Ahh" forty eleven times. After awhile, Blake livened up and climbed on the exam table, a place he's never willingly gone before. He's always screeched and clung to me, so over the years, all of the boys' exams have been done on my lap or on the floor.

Drew entertained himself by spinning Dr. Blatchly's chair. Then spun on it on his belly.

Of course, Drew tried to leave the room a million times saying, "I'm outta here."

So, Dr. B. finally made it in and diagnosed Blake with influenza. Blake fought him getting examined. Dr. B was very quiet and calming and got him to cooperate for the stethescope part. Not like the last time when Blake cried on his shoulder and put his arms around his neck, but he cooperated. Dr. B prescribed Tamiflu for all of us. Bless him! The rest of us are still well, but Eric has to have his wisdom teeth removed on Friday and he can't really afford to get sick right now.

So, the dr office emails the prescriptions in now, and they always tell us to give them a half hour to get it there. It was twenty 'til five when we left the office, so we dilly-dallied around. We went to Wendy's for the supper. I was pleased to see that Blake actually ate some of his chicken nuggets. Then we got Eric a couple sandwiches at Arbys. Thinking it had been over 30 minutes, the boys and I went to Kroger to get our meds. Well, Drew didn't want to leave the doors, so that took me a good five minutes to convince him to follow along. Finally, we made it to the pharmacy and they said, "We just got your order." They said that two of the prescriptions had to be compounded and were liquid. I had asked for pills for Drew as he absolutely HATES liquid medicine of any kind, but the pharmacist said it had to be liquid due to the dosage prescribed. And she mentioned that the compounded meds might be more expensive. We waited around a few minutes and the pharmacist's assistant told me it would be another half hour. I wanted to cry. I must have looked desperate when I smiled and said ok. Because as I was walking away with the boys, she called after me that she'd page me just as soon as they were ready.

We wandered around for about 20-25 minutes or so and they paged us. Woohoo! You can only look at notebooks for so long.. Anyway, my bill was $146 for everything! Worth it if it makes Blake feel better and keeps the rest of us healthy.

So, you think you got to the end of this post? Ha! We still had to give Drew his medicine. What a debacle! He screamed and cried and fought and refused to swallow his medicine, causing it to spill down the sides of his face. I re-dosed him and literally sat on him to get it in. It was awful. I think I'll just put it in his juice tomorrow. lol. If he refuses that, it's going to be a long ten days.