I know it has been ages since we’ve posted anything here, so there is plenty to talk about, but tonight, I just want to share a video. If you are reading this in an e-mail, please click on the title of the post (above) to get to the web page for this post to view the video.
Check out what this little guy can do!
Go, Matt, go!
If you can’t view the video above for some reason (or you don’t see a video), you can view the video by clicking here.
We had a wonderful and busy summer. It started off with a sad note as our neighbors and good friends left and moved to TN. Caleb started his surgical residency in June and we wish him all the best. Their moving away though, did inspire us to revamp the backyard. We acquired from Craig’s list and awesome wooden swing set with 2 slides and a tree house type area. Abby had really wanted a tree house, but we don’t have great trees for putting one in. Also, Dave built an awesome sandbox big enough for both kids to play in. Zach has spent most of his summer in it. It is wonderful to see all the creative play with the tree house and the sand box.
Then Zach turned 3. I can’t believe how fast it goes. (Future post on the party with more pics to come)
Happy 4th of July and birthday to my mom.
Then we went to KY to visit with our best friends Earl and Candra. It was such a blast and a great way to spend a week. (Future post with more pics to come)
We had 2 new arrivals to the house. We got 2 new cats. A grey tabby (Rocky) and a tuxedo (Zorro).
We went to Kennywood. (Future post with more pics to come)
Dave had his birthday. Happy birthday my love!
We went to the zoo. (Future post with more pics to come)
Abby started 1st grade.
My mom, sister and I went to a Pirates game.
Abby turned 6. (Future post on the party with more pics to come)
Other fun picks of just some at home summer fun.
This was driveway paint that we made out of water, cornstarch, and food coloring. What great fun!
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.
My last cute thing for this post since it is so long. Matt loves to play peek-a-boo with his blanket. Here are some really cute pictures of him doing it.
Hello, all! Matt has been doing very well since his last surgery in early February to open up his nasal airway. He went to one followup appointment in the OR two weeks after his surgery, and they said things looked good then and to come back to the regular ENT office (clinic) in another month. He just had that appointment earlier this week, and they said that he still appears to be completely open and clear! Yay! ENT said that as of now, Matt is officially done with their department unless something comes up to require them. Yay! Hopefully, that is the last time we will need to worry about his nasal airway!
In other news, he had an MRI earlier this month to check on a few things. His brain appears to be perfectly fine (we weren’t worried) and shouldn’t need additional follow up appointments for anything there, either. However, he DOES have a tethered cord. From the Wikipedia Tethered spinal cord syndrome page: “The spinal cord normally hangs loose in the canal, free to move up and down with growth and bending and stretching, a tethered cord is held taut at the end.”
As his spinal cord will be pulled on as his spine grows, this could cause problems for him, from pain through disabling problems such as loss of bladder function, numbness in the lower extremities, to the inability to walk. Clearly, it should be corrected, and sooner rather than later. (Some people take a “wait and see approach” to this problem, looking for problems in time and to see if it somehow corrects itself or is a misdiagnosis. We feel it would be best to take care of it as soon as possible.)
So, with that diagnosis, and our position on it, Matt is scheduled for surgery on Tuesday, April 10, 2012 to correct his tethered cord. We don’t yet have all the information on recovery, but the basics are that Matt will spend some days in the hospital for post surgical recovery (we are not yet sure if this is something like two days or a longer stay) and then can come home and just be encouraged to be on bed rest, which isn’t a big deal, since he will only be six months old at that point, and is not yet walking or crawling. The prognosis for normal life after this point seems to be good, so we aren’t terribly concerned about long term effects of his tethered cord. (Granted, every surgery has risks, and everything has risks of complications, but we don’t expect any problems, and are looking to the time post-recovery.)
And now I cannot find the website that I liked best regarding Tethered cords, but if you want to read more about it, it seems that Children’s Hospital Boston has pretty good info on their site for Tethered Spinal Cord.
Matt is doing well in so many ways, though. He is wonderfully cute. He is very social and always smiles back at me when I smile at him. He also loves our living room ceiling fan and can watch and laugh at it for a long time. 🙂 Here, take a look:
Now, be aware: the ceiling fan isn’t even running – it is perfectly still during this video. He just loves it, though!
Oh, and if you are reading this in an e-mail, be sure to click on the post title, or right here: Matt update for March 2012 to watch the video!
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