Posted by Rachel
Wow, looking back at the blog I see just how long it has been since anything was posted here. So much has happened to Matt since the last post in March.
In the last post it stated Matt was going to have spinal surgery to release his tethered cord. He did have the surgery and oh what an ordeal. The initial surgery went well and everything appeared to be healing well when we left the hospital, though we did have some concerns regarding how the surgical site was looking. They had used the surgical glue to close his incision instead of sewing it shut. By the time we were leaving the hospital the glue was already pulling away from the skin. About a week after being sent home he had a very high fever. Since we didn’t know what was causing it we called the doctor and they said take him into the hospital. The surgical site was infected. They had to take Matt back into surgery to clean out all of the infection. This time when they closed him they sewed him shut. He was so miserable and in so much pain. They had him on morphine to try and keep him happy, but that caused its own problems. They ended up putting what was called a trumpet in his nose to keep his nasal passages open and clear so he could breath. Apparently since he was being kept fairly sedated with the morphine his soft tissue was kind of collapsing and making it hard to breath. When Dave was with him they had to call a code blue because he just wasn’t breathing right and his stats were so low. During this whole ordeal they were working on figuring out what kind of infection it was to decide on what antibiotics to use. The plan was to place a PICC line to administer antibiotics from home. Since this was the plan they were not allowing Matt to eat since they would have to sedate him again to place the PICC line. It ended up that Matt had not eating anything in more than 48 hours. I can’t even begin to imagine how uncomfortable Matt was. He was in pain, hungry, and back in the hospital.
Well, we got through it. Matt’s surgical site ended up healing very well, though he probably now has a bigger scar than initially expected due to having to open him back up and clean out the surgical site. Matt was on antibiotics for 2 weeks via the PICC line, but we were able to take him home and administer the meds at home. We had a nurse that came to the house a couple times a week to check the PICC line and clean around the entry point. Didn’t want to have another infection at that site.
That was Matt’s last surgery and since then we have been hospital free other than his follow ups with his various specialists.
Since getting over that infection and his nasal passages still staying free and clear we have actually been able to move to a somewhat stage of normalcy. Matt still has good nights and bad, but hopefully emergency hospital visits are done. We are now working on getting him caught up physically with what an 11 month old should be able to do.
Matt was initially evaluated in January for what is called Early Intervention. This is a service provided by the county to children with special needs. Since Matt had the chromosomal deletion he automatically qualifies. During the initial evaluation he was 3 months so really what does a 3 month old do. I found it very hard to figure out a plan of action and what services he made need since I didn’t feel at that time he was significantly delayed physically. Now looking back at that I wish a PT had been there during the evaluation so his extension issues could have been diagnosed sooner. When Matt had his 6 month evaluation with his service coordinator we asked for a PT evaluation. He was now 8 months old and didn’t roll over, sit up unsupported, and continually crossed his right ankle over his left. A PT came to the house and immediately saw the issue. She said he should have been receiving PT the entire time. He was what they call an extender. He was great at going backwards and flinging his head back, but the reflexive muscles were very weak. You need the reflexive muscles to pull yourself forward. He needed PT to help him to build the right balance of muscles. Without balance he would not be able to do any of the things he needed to. We immediately started working with a PT and wow what a change. Matt is gaining the right kind of muscles now. He loves his time with the PT. She is so great with him. I would recommend her to anyone. He wants to move so bad and is learning everything very quickly. Each week his PT is so impressed with his progress. He still has a long way to go, but it is progress. He is now sitting better, doing more rolling over, and getting his knees under him to start crawling. He also really wants to stand and loves when you give him some support under his arms so he can. He wants to bear weight on his legs. I believe mentally he knows what he wants to do and what he should be doing by this age, but he can’t get his muscles to work the way he wants. He has PT once a week for now for an hour and his PT in here at the house. So wonderful because then Matt can be where he is comfortable and Zach can be here too. Zach loves to help play with Matt while the therapist manipulates Matt’s body into different positions. I suspect that in another month or maybe less he will be crawling.
Matt started on solid foods several months ago as well. He loves eating “real” food. He doesn’t yet have the pincher grip so he doesn’t feed himself finger foods yet, but we will work on that. He does eat very well. His favorites are sweet potatoes and all the fruits. He has pretty much loved or at least liked every food he has tried with the exception of green beans. Those he hates and spits out. We have tried them on several different occasions with the same result. We will continue to try and hopefully he will learn to at least like them.
Matt has quite the personality. He definitely is not shy about letting you know when he is not happy. He is very vocal. For a while he was saying “ba, ba, ba”, but not he just kind of makes loud noises. He loves clicking his tongue against his 4 teeth. He has a 5th one coming in, but it isn’t fully in yet. He has an infectious laugh. I love when Dave really gets him going.