More Meds

Friday I took Matthew to the regular pediatrician. For a little over a week, he has been throwing up between 7-11PM....maybe every other day. The doctor said he has a little bit of an ear infection. He explained that 50% of kids who get ear infections, they clear up on their own, even the bacterial. We decided to give him antibiotics because his immune system is still recovering from the ACTH. The doctor gave him "strong antibiotics".

The doctor felt that because he was draining, this might have upset his stomach...causing the throwing up.

Last night Matthew threw up a little bit. We wonder if he has some sort of baby GERD or something like that. Once we sit him up, he is fine. He burps a little, but doesn't always throw up. We have found that after his last bottle, if we sit him up for 45 minutes-ish we usually don't vomit. But, sometimes he falls asleep while drinking his night time bottle, so we don't sit him up.

It was taken with my cell phone, so it's kind of blurry, but he was getting his tummy tickled.

More progress...whoo...

Matthew is taking an interest in trying to roll over. He is just started to swing his legs but we are helping him roll over so he can learn how. His physical therapist showed me techniques to ensure we are doing it properly. He also has been trying to stand when we pick him up. He straightens his legs and can hold his weight for about 5 seconds....Then he gets jello legs. He smiles and loves it. His physical therapist has given us tips on how to help him stand for a few seconds without dislocating his shoulders.

six month meeting

Today we met with his Physical Therapist, his Case Manager and his Developmental Teacher. We discussed our treatment plan created 6 months ago. It was determined that Matthew had a slow start to improvement, but over the past 2 months, he had made significant improvements.

We were given tips to help Matthew improve and keep him on the right track. We are so lucky to have such a good treatment team who really care about Matthew and his development. We will continue with our current services.

EEG

Last Thursday Matthew was running a ever of 104.8. Once we gave him some Motrin and a cool bath, it started to slowly come down. It took about 24 hours and then it was normal again.

Friday was Matthew's EEG and follow up appointment with Dr. R. We are continuing to take Matthew off some of the harsh medications that he was previously prescribed. We are done with the ACTH (whoo!). Dr. R said that while Matthew was coming off the ACTH, it compromised his immune system. He said that if Matthew gets sick, he has virtually no way to fight the infection. This would explain the high fever an the vomiting Thursday. Dr. R suggested we go to the pediatric emergency room, if needed. Dr. R said that he was on call all weekend and he would be more than happy to help out with Matthew. He said that Matthew may need a bolus of steroids to fight an infections. But, he got over the bug without an ER visit.

The EEG lasted about 20 minutes. The results indicate there are no seizures present. However, there is still activity in the part of his brain that controls vision. The activity would probably turn into a seizure IF he were not on medications. This would explain why Matthew had a hard time watching us.

Dr. R showed me part of the EEG that was "perfect". So, the increased activity is not constant, but it's still present.

Matthew continues to smile, laugh, play, kick and wiggle. His appetite has been off, but he's been fighting the last part of this bug still. He is gaining more head control and does not need much support to hold his head up (he's like a 1 mo old with his head when he sits up with help). He seems to want to stand...if we put his feet on the floor, he pushes up like he is trying to stand. It's tough trying to hold a 25 lb wiggly/floppy baby up to help him stand. But, he's improving, so we do what we need to do.

Holiday Party

Tonight is the USAF's Holiday Party. Chris and I were planning on bringing Matthew. I had talked to a few of the other military wives and asked if they thought it would be a problem to bring our little guy with. He's very well behaved and he'd hang out in his stroller all night. I mean, he can't walk/sit up yet, so he's not going to be getting into any trouble. My thought on bringing him with, as opposed to getting a baby sitter, is he obviously has special needs. Not only is he on a lot of meds (which I'm sure a baby sitter could figure out) but he has a serious medical condition. We had an offer for someone to watch him, but Chris asked if she was familiar with seizures. She was not.

We would trust certain people to watch Matthew, but we don't have anyone out here that is familiar with special needs babies with seizures. We are concerned that IF we had someone watch Matthew, they would not know the signs/symptoms to look for. IF Matthew had a seizure, they won't know what to look for. And if they called 911, would they know what to report?

We're trying not to be overprotective parents and we have only had to call 911 once in the past 10 months, but we are not comfortable having someone watch Matthew at this point (who is not not familar with seizures).

OK, with all that being said, the other day, Chris's coworker strongly suggested that Matthew not attend. Chris gave her the whole thing on special needs, seizures, etc. She said she understood, but technically no kids are allowed. And I guess it just takes one person in the group to (not necessarily her) to complain about favoritism and it could ruin the party. So I'm not going to the Holiday Party this year.

At least I will be able to stay away from all of the tempting high-fat, high-calorie foods at the party.

It costs what?!

I thought I'd share how much our adventure to Chicago cost....well, the medical portion (not the gas, hotels, meals, fun stuff, etc).

His ACTH indictable medication, for 6 weeks, cost: $73,298.85 ~~I only had to pay for $9 for the ACTH! (Oh, and I had to pay $30 for the syringes at Walgreens). Kinda funny that the syringes cost me more.

His hospital stay at Children's Hospital cost for 5 days : $66,000 ish. They sent us our bill for $1800, but we called insurance and they said that they had the wrong policy number and our bill should be all covered!

We have had some positive adventures over the last few days. We drove down to the Ft. Lauderdale area, which is about a 10 hour drive without stopping for baby breaks. Matthew takes four medications, but they are not all at the same time....we take meds 5 different times a day (7AM, 10AM, 2PM,7PM & 10PM and every other day for injection). Some of his meds are three times a day, some twice a day. One he takes right before bed. I used to have to write them on a calendar to know what meds to give when.

Matthew did pretty good in the car. We drove down in two days, we used to be able to do it in one day, but with Matthew he gets fussy. Toward the end of the first day of traveling, he was trying to wiggle and he was restrained, he got upset. Once we stopped for the night, he was a happy boy.

He had a good Thanksgiving. We saw family that had not met him yet. He got lots of cuddles and smiles. He was in a good mood most of the time, but he also had his 1st cold. He has a wet cough.

I had a family member tell me about an experience she had with a medication Matthew is taking, Topamax. Topamax is also prescribed for headaches/migraines. My family members said she was taking 100 mg per day. At Matthew's highest, he was taking 150 mg day (he is now on 90 mg day). Keep in mind, this a a full grown adult reporting this story---she said one night she woke up from a dead sleep and thought she was having a heart attack or stroke. She was sick to her stomach, her heart was pounding, she was short of breath. She tried to wake her husband and she heard her words in slow motion. She realized she was hallucinating. After she went back to her doctor, they figured out it was due to the Topomax. It makes me wonder if Matthew had any symptoms like this. He has been on this medication since he was 4 months old...he started off at a low dose, but it was increased to 75 mg twice a day.

Matthew used to get so uncontrollably fussy and vomit every few days when he was at his highest dose. When we went to Children's Hospital in Chicago, one of the first things they did was LOWER his Topamax. He also seems more alert now that he's on this dose of the meds.

We have 12 days left on the ACTH (injection). Once we finish that, we will start to get him off the Topamax.

Matthew is sleeping better during the night, he is starting to look at us more. He constantly is kicking his legs....so much that his developmental teacher warned me he might get sore ab muscles. He doesn't complain about it, though. He "talks" to us a little more now. He has been cooing for about a month now, but he says, "Ah" when we talk to him...almost like a little conversation.