The Geneticist Visit

Garrett went to his yearly geneticist visit about 2 weeks ago. They've tested him for just about everything they can. Everything has been normal. At this point, the geneticist just wants to follow him to update his file. The hope is that one day he will get a dx, but I'm not holding my breath. The appointment was fairly straightforward...no new quirky things to note, and he hasn't been sick hardly at all. He didn't see the doctor for any sick visits between his second and third birthday, and I think he only had a fever once during that time period.

But then I get a phone call yesterday to call them back. I'm hoping he was able to discuss Garrett with the other geneticists and someone came up with something that might fit his symptoms. But, like I said, I'm not going to hold my breath. A dx would be great, but it doesn't seem likely. Unless something new has been found within the past year (which is entirely possible), I can't see that he will get a dx.

I'll update as soon as I am able to talk to them. Garrett also sees the cardiologist on Tuesday, so I'll give an update about that. His ped thought he heard a heart murmur, so that is the reason for the cardiologist visit. I'm not too worried about it. It seems like everyone either has a heart murmur or knows someone that does. I'm hoping if he does have a heart murmur that it's an innocent one.

Editing for an update: The geneticist called to tell me that there is a new chromosome test they could do if I wanted it. Sure, why not. I was hoping they figured something out, but no. Oh well.

Garrett went to the Cardiologist. They did an EKG, and the doctor listened to his heart. She said the EKG was slightly off and that she could hear a very faint murmur. He is going in for an ultrasound of his heart on the 28th of September to check for a heart defect. He has to have oral anethesia for that. He's always a monster when he comes out of anethesia. She assured me that even if he does have a heart defect, it is not an emergency. I'm hoping this is just an innocent murmur and nothing else. I hope we get the results from the ultrasound that day. I hate having to wait for those type of results!!

My Head is Spinning Again

Yesterday was a crazy day. Garrett had ST, OT, PT, and his yearly visit to the geneticist. It was a long, long day. The boys had to eat lunch 1 hour early. Rylan was fine with this, but Garrett wasn't really hungry. They didn't really get naps. Rylan was exhausted by the time Garrett was in PT (4pm), but he can't sleep just anywhere anymore. Garrett came out of PT crying. I knew he was wiped out too.

My head is spinning because I just can't quite wrap myself around the idea that Garrett still does not have a dx. How can he not have a dx with everything that is going on with him? My worst fear is that Garrett is mentally retarded. As I watch Rylan learn, it just nags at me even more how slowly Garrett learns. He learns, but it is slow...the precise definition of metal retardation. The genticist told me doctors and educators can usually tell at age 3-6 if a child is mentally retarded. But, he also added that anything interfering with speech development (i.e. Garrett possibly having verbal apraxia), throws that right out the window. I just wish I knew one way or the other so that I could move on. It will be difficult for me to accept it if he is MR. I know I will accept it eventually, but I don't really want to face it.

What did I do about my spinning head? I googled a few things, of course. WHY do I do that????? Why do I think I can dx him if 4 different doctors can't? I have told them every single thing about Garrett. If they can't figure it out, I sure can't. But still, I try. I always end up in the same spot...several things that could fit if I really stretch my imagination.

I'm just glad the geneticist did not order a blood draw yesterday. Garrett hasn't had a blood draw in over a year, and I imagine he would do a wonderful job at fighting it. He was scared to death to even be measured.

Sure Steps and Shoes

Garrett's PT gave us a pair of Sure Steps to use. Garrett's feet roll inward when he walks, so the PT thinks he needs these to prevent knee and hip problems in the future. At first, I wasn't liking the idea. I'm okay with it now because he actually WANTS to wear them. Imagine that. The only problem now is getting his shoes on over them. His current shoes just won't work. I don't know how the PT did it, but I cannot for the life of me get his shoes on. He put the Sure Steps on Garrett and brought him out with his shoes on. I have managed to get his shoes on once, but that was because I unlooped the velcrox strips. I guess it's time to shop for shoes again...

I will try to remember to post a picture of Garrett with his Sure Steps on.

On an unrelated note, I quit one of my jobs yesterday. I was really sad to do it. I've worked there for over 4 years. Actually, I'm only sad to be losing the discount. They said I could still use my discount for 2 more weeks and they won't schedule me! That was really nice of them! I know Christmas will be more calm this year. I am usually working like a crazy person during the few weeks leading up to Christmas. That is the nature of retail though. I sure will miss that discount, but my life really needed to be simplified.

Doing Too Much of Everything

Have you ever felt like you were trying to do too many things and weren't doing any of them well? That's where I am right now. My house is a disaster. It is to the point that I just want to walk around with a garbage bag and throw everything away that has been sitting for months on the counters in the kiten, the floor of the den, and on the dresser in our bedroom. If it's been there for months and I haven't needed it, will I ever need it? Some things I DO need to keep (like paycheck stubs and some receipts), but other things I know I could throw out. Most of the things are paper...like mail, coupons, magazines...that do nothing but clutter the house. There are also boxes from things we buy but don't know if we should hang on to the boxes for awhile or not.

I just hate it. I feel like my life is a mess when my house is a mess. I try to clean up, and I can get one room clean but then it's a disaster again in a week. How does that happen???? It's clean one day and then somehow it's a mess before I even realize what happened.

I have the SAHM responsibilities and 3 jobs as well as training for a marathon. All of my jobs are very part-time, but I feel I can't put 100% into anything I do. There just isn't enough time to do that. I feel guilty when I have to clean the house instead of playing with the kids. I feel guilty when my husband is home for a change but I can't spend time with him because I have to work. I need to quit one or maybe even 2 of my jobs. And I need to step back from marathons for awhile after I run Chicago. I think those 3 things will really help me regain focus. I WANT to do it all even though I know I can't.

How does all of this connect with Garrett's hypotonia? (This is, after all, a blog about Garrett's hypotonia.) Well, I know every mother has felt this way at some point. Garrett's therapy and the things we have to work on at home are a job in itself. How many parents of typical 3 year old children have to practice climbing stairs, using utensils, speech, and on and on? Most 3 year olds I know are busy playing outside on the swing set or in the pool while the mothers sit close by chatting while watching the kids play. I have to be right there by his side. There's no chatting with the other mothers because my kid can't climb up the slide by himself or be in the pool that is chest-high by himself. I usually have Rylan with me, so there's the added bonus of chasing him as Garrett is trying to go down the slide or climb in the pool. I just feel like I can't get this part of my life worked out either. It is 100 times easier this summer than it was last summer with a newly walking 2 year old and a newborn baby. But, I still wouldn't dare call it easy.

I know what I need to do, but yet I'm struggling. I think today will be the day to quit the first job. Come October, the marathon will be over. Then I'll figure out what to do about the second job. I will keep the 3rd job. It's freelance work, so it's super flexible.