Baby Steps

Although these milestones are normal for an average 10 month old, these are new to Matthew. We are very pleased with the ACTH. Two nights ago we were getting him in the tub. His toes were under the faucet with the water running. He pulled back his legs to get them out of the stream of water. The was the first time we have seen him make the connection with his feet. He is starting to understand that if he feels something, he has control to move. He is also lifting his legs (somewhat) when I change his diapers. He hasn't raised his legs with control ever.

He is continuing to smile and laugh. He is very audio aware. When I was on base last week and the Blue Angels were practicing, one flew RIGHT over us. It was pretty low, too. It startled me and it made Matthew smile. He seems to listen and respond more (with coos) when we talk to him.

Matthew continues to show more emotion. For so many months, he was in a "blah" mood. Not happy, not sad. If he was fussy, I would hold him. It didn't make a difference. Now he had different cries and whines. (Like a normal baby should). He tells us when he wants to be held...we love this because he didn't care for so long if he was held or not. He tells us when he's tired, mad, happy, etc.

He's still not tracking us very well. We continue to work on this skill with him.

New Doctor

Monday was our initial appointment with Dr. R. He is in the same practice as old previous provider.

Dr. R commented on Matthew's helmet. He said, "oh he has a Star Helmet". Star is the brand. We were very impressed. The previous Dr had commented on the helmet being for seizures, not reshaping as it is indicated for. Dr. R feels that Matthew will outgrow the Infantile Spasms. He is going to work with us to get him off of most of his medication. We are going to keep the Keppra. Matthew probably will still have to live with Epilepsy. Dr. R was/is familiar with Matthew's ACTH medication. Because this medication is intense (and expensive) we wanted to make sure someone in the Pensacola area would be able to follow Matthew with confidence.

We follow up with Dr. R in December. We will have another EEG before his appointment.

Belly Laughs

For the first time this weekend, we heard Matthew have some belly laughs. He would giggle before, but now we're LAUGHING. It's not all the time, but Matthew is starting to respond to sounds. I sneezed the other day and he started to laugh. I also belched on another occasion. He found this funny, too. We haven't quite unlocked the secret to get him to laugh, but at least we're getting some good, real belly laughs. He typically starts to giggle to himself and then we interact with him to get him to continue.

Happy Matt

This is something we haven't see in awhile!! He was responding to me when I was talking and saying his name.

Last week's Neuro Appt...

We went to Biloxi the other day, so I haven't been keeping up with Matthew's progress. So here we go.

Last Monday I took Matthew to see his previous Ped. Neuro here in Pensacola....You know, the one that was treating Matthew for Epilepsy, not Infantile Spasms? Because I'm so non confrontational, WE decided to give him ONE more chance. He's so nice. But, as some of my friends have said, "do you want someone nice or someone who gets the stuff done". He was glad that Matthew had started on the ACTH. He was glad that Matthew had an opportunity to go to Children's Hospital in Chicago. He even thanked me warmly for attending the appointment that day.

I had some questions on this medication. I mean, when a medication costs $70,000 + a month for treatment, you don't get it at Walgreen's---so I can't just ask the local pharmacist. Dr. Coker in Chicago explained to me that children sometimes need two rounds of treatment. Each treatment is 6 weeks. I asked Dr. W (Dr. out here) how and when will we know when he needs another round, if he does. Dr. W. warmly spoke to me with his Latin accent and said that he wasn't sure if we started right when the first round was done or if we wait a few days/weeks. RED FLAG #1.

I continued to ask questions without getting answers I understood. I discussed with him that Dr. Coker said that Matthew's blood pressure needs to be closely monitored. I asked if I could swing by once a week to have it taken by the nursing staff. He said we could work something out. I'm near his office twice a week for physical therapy, so it's not a big deal for me. Plus, it's my son, I'll do whatever I need to do for him. By the end of the appointment, Dr. W says, "So you'll follow up with your pediatrician so they can graph everything?" I had NO idea what he was talking about. I thought we said we would follow up there for blood pressure...and now what is this stuff about graphing? And what are we graphing? When I asked for clarification, he basically used his hand to show me what a mapped out graph looks like. Yah, I get that, but WHAT exactly are we graphing? Weight? BP? I don't know. RED FLAG #2.

I told Dr. W about Matthew still rolling his eyes. I know they are seizures and Dr. Coker explained that "normally" once on ACTH there are NO seizures. He basically told me, "He's better though". That's what he's been saying for the past 5 months!!

When I checked out after my appointment, I softly said to the receptionist, "Um, what do I need to do to switch doctors?" I explained I have a hard time understanding him....but that's only half. I just don't feel comfortable with his experience with ACTH. The lady took my name/number and said she'd call me.

5 days later, I still hadn't received a call. I decided to call the RN at the office....I left her a message and within 3 hours she called me back. I was fully anticipating that I would have to fly to Chicago and follow up with Dr. Coker there. She said she talked to Dr. R and I can see him Nov 10th.

My regular pediatrician had been coordinating with Dr. Coker's office in Chicago. They agreed to see Matthew as a walk-in for BP checks. Dr. Coker's office basically said all they need to do is BP and check the site of his injections to make sure they're not infected. That's it. That's the great mystery of the "Graph".

I'm going to see how it goes with Dr. R. He is the main doc at this practice, he's been there for about 20 years, so I feel good with him.