They love him like I knew they would. I mean who couldn’t love this little guy?

I am totally comfortable leaving him there with them. I think he will do awesome there. He will be going four days a week from 8-11:30 am. So not for too long but it will get him used to being away from me. Bad thing is he turns three on May 11th and they stop school May 17th. The coordinator said she should be able to get him into the “summer school” which will be one day a week in July.  I really thing that will ease him into it. Since the only time he has been away from me is with family or at church in the nursery.

I am excited about all that he will learn there. I think he will love being around other kids his age. He is a very social person. He actually didn’t want to leave the classroom yesterday. It was so cute.

I am gearing up for his Third Birthday which is superhero themed. I can not wait!

He also wants to continue with the Botox Injections. Last time he only got the injections in his hips so I am hoping at this new doctor they can get on a good schedule for Botox and where they are most needed. The nice thing about the CP Clinic is I can make an appointment to see all three of the doctors in the same day and they would do the Botox that same day. Instead of the current way it works here.  You have to see the doctor then she schedules for like three months out for Botox.

Another awesome thing is he said Carsyn could be a good candidate for selective dorsal rhizotomy. He said he would want Carsyn to be about 4 years old before that surgery. So we have about one more year before they would do that. Basically it is a surgery they do near the spine that would cut the nerve roots that are making his muscles tight.

If you all remember Carsyn went for a hip x-ray back in December you can read about that here. Well yesterday we met with the Orthopedic Surgeon and boy am I glad we picked him. I will call him Dr.R. He was amazing. Dr. R checked out Carsyn’s hip x-rays on the computer and said that Carsyn’s hips really weren’t that bad. He was so happy that we met with him now and not at a later time when things were really bad.

Dr. R said he would do everything and try every option to avoid surgery for Carsyn. Coming from an Orthopedic Surgeon this was a breath of fresh air. Not that I have met with one before but it just seems like lately all doctors want to rush into surgery and medicine just because it is available.

Dr. R thinks that since Carsyn is so young and still developing that we can try this brace while Carsyn is napping and sleeping at night. Also during the day as much as possible. He said this will really tell his hip the correct way to grow.

Thankfully Carsyn doesn’t seem to mind it at all. He actually smiles when I put it on. Maybe this position gives him a nice little stretch? He falls asleep in it no problems and sleeps through the night like normal. Hopefully this will continue. Thanks everyone for the prayers.

]]> https://oursonshines.com/my-rock-star/feed/ 7 https://oursonshines.com/hip-update/ https://oursonshines.com/hip-update/#comments Thu, 13 Dec 2012 03:48:22 +0000 http://oursonshines.com/?p=240 Continue reading »]]> Well last time we had Carsyn’s hip x-ray done his right hip was about 30% uncovered. This time his right hip was about 40-50% uncovered and his left hip was about 30% uncovered. Not good!! So we are scheduling an appointment with an orthopedic surgeon to see about doing some muscle releasing surgery in his hip areas. Should keep him from scissoring his legs and hopefully will keep his hips from coming out of socket.

I really have mixed feelings about the surgery. She said the orthopedic may say to just wait on the surgery for now which would be great because I really do not want Carsyn to have to have surgery. On the other hand the surgery would be helpful so that he wouldn’t scissor his legs. Plus it could free up some of the botox he is allowed, to be used in other parts of his body. His botox is scheduled for February sometime before then we will need to figure out if he is going to have the surgery or not. Please pray that the doctors and I make the right decision for Carsyn.

He did get an increased dosage of baclofen that she hopes will help his arm muscles and his tight hamstrings. We will see how that goes. It will now be in pill form so I will have to crush it and give it to him. Anyone have advise on the best way to do this? I want to make sure he gets it all so not sure how I should get him to take the crushed pill.

Also he has another ear infection. They gave him antibiotics. Hopefully it will clear up quickly. Could explain why he hasn’t been sleeping well. I just hope this isn’t becoming a regular thing. Poor guy has enough to deal with!

In good news he is doing awesome in his gait trainer but I really need to get him to use his swash so that he doesn’t scissor in his gait trainer. He also really needs to wear his AFO’s. Right now he doesn’t want to move if I put his AFO’s or his swash on. We will need to work on that, and getting him more stander time to hopefully prevent him from having to have surgery.

That is what is going on in my life along with everything else I am working on plus Christmas. Oy! It is going to be a busy end of the year!

So excited that Carsyn finally got his gait trainer, which is called Mustang. It will take a while for him to get used to it. Right now he just stands there, but we will work on it. I have a month and 10 days till Halloween to get him walking. He does look pretty cute in his superman outfit.

Frame from Life-n-Reflection

I really did want to share more about his gait trainer but I am on my second day of headache with no relief. Hope you have a great weekend.

YAY! The company called me today and said they are delivering Carsyn’s gait trainer to our house tomorrow!! This is so awesome and unexpected, one they told me it wouldn’t be there till the 21st, two I was thinking I would have to drive up to Virginia to get it, and three I was thinking it was going to take at least a week to get an appointment. Guys, I am sooooo excited to get this. I am hoping and praying that he will be able to use it for Halloween. I just think it would be so adorable having him walk around in it with his Superman outfit on.

I will post pictures and videos tomorrow of him in it. I really hope he picks up on it quickly! I think he will love walking around and interacting more.

This next part is very personal, but I want to share it with you all and let you all know you are not alone. It is hard being a mom of a super hero. I saw my doctor today for a little bit of anxiety and depression I have been having since I found out Carsyn’s diagnosis. She has prescribed me some medicine. We will see how that goes. Hopefully it will help and I can get back to keeping my house clean, exercising and I will stop emotional eating. She said it will be 2-3 weeks before I will see a difference. Praying it helps.

I want to preface this by saying that this is not what I pictured for my life. I guess no one does, and you don’t plan for this. God does plan for it, he had me picked out to be Carsyn’s mom way before he was born. I am not sure why he picked me but he did. I had a lot of resentment in the beginning. I asked a lot of why questions, even though I knew I wouldn’t hear or see the answer right away. I would get upset when I saw other kids his age or younger doing things that he couldn’t do. I became very emotional about all the things I pictured Dustyn & Carsyn doing together as brothers that I didn’t think they would ever get to do together.

The other part of me was and still is scared. Sometimes these HPE (holoprosencephaly) kids just pass away in their sleep. No signs, symptoms or reasons. I pray every night that Carsyn will still be there in the morning. Even though this isn’t how I pictured my life, I could not picture my life without him. I am also concerned how that would affect Dustyn. This is another part of this whole journey that I have to trust God.

Struggles are a part of life with superheros. You struggle with the physical problems, scheduling all the appointments, dealing with insurance companies, and all the feelings that come with it. All of these struggles are worth it when I see his sweet smile. Whenever we are out in public he makes everyone smile. Carsyn is such a sweet & happy boy. I think I am finally starting to realize why God put him in my life. I am a blogger so I can share about his diagnosis online and he has also taught me to enjoy the little things and not to take anything for granted.

My friend Whitney made this for me! I love it.

You can read more about Carsyn & Dustyn.

I hope you will join us and enjoy reading about our life here. Thanks for stopping by!

I have a photography blog if you want to check it out. I share a lot of tips, reviews and tutorials over there.