Pulmonology: The pulmonologist gave good remarks on his lung health, and a lecture on being cautious this winter. She wants us to keep up his nebulizer treatments of Pulmicort every day through the winter and if we get through it with no issues, this will probably be the last season for preventative care! The other piece of good news from that visit, is that we don’t have to repeat the sleep study which she said we were going to have to repeat after his tonsils were removed earlier this year. Truth be told, I’ve been avoiding going back into see her and delayed our appointment a few months because I figured she was going to make us repeat it. After seeing how well he’s been doing, she said she trusts that the T&A surgery took care of his sleep apnea. Thank goodness! I hope Lucas never has to go through all of that sleep lab business again.
Neurosurgery: Dr. Yaun's visit was great. We did not do a CT scan or MRI to look at the shunt this time, just a checkup. We have an MRI scheduled in December to take a look at his brain and the shunt. Its always good to see her and she was very pleased with his progress and deameanor. He was a little charmer with her again that day... talking and giggling constantly. I happen to have my camera in my purse that day so I asked her for a picture for Lucas’ baby book. She probably doesn't get that request very often, but since she is one of the most important people to us that gave him life, I wanted to have something to remember her, and for Lucas to know how important she was for him when he is older. Not that she’s going anywhere… I just wanted to document this time with her.
Plastic Surgery: We saw the Chief of Staff for Pediatric Plastics about his nose (the doctor we were referred to since our doctor left Children’s). Kind of what we expected… he is leaning towards waiting until Lucas is about 4-5 years old to fix it. He is ultimately leaving the decision to us – and we talked through multiple pros and cons of doing it now versus waiting. We can really do either, but there are so many things to think about. 1) Even though it is a fairly “simple” surgery, it is also very difficult at the same time because it is such a small area that will continue to grow. The longer we can wait for the area to be larger, it may help alleviate having to adjust it later. 2) The small area will also create a scar that is expected to shrink over time. There is a chance that it could shrink enough to pull the new bridge inward, causing the need for a repeat surgery to correct. Waiting until he's bigger may eliminate this risk, but he also said that it could happen regardless. 3) Developmental stage – the biggest risk to him is damaging the area post-surgery, which is the most common problem for kids this age. The nose protrudes, and no matter how much you try to protect it and possibly splint his arms, it is probably going to hit. He said he’s had kids literally damage it on the way out of the hospital.
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Since he’s not crawling yet but rolling around a lot on the floor and moving on his back... is it better to wait till he’s crawling? But then he may be more inclined to fall and bump it. Is it better to wait til he is walking? And will he be walking by 4? If he’s not stable, how often will he fall? If he is splinted, can we be sure he will still be able to catch himself. Is it better to wait until he can understand “don’t touch your nose” rather than splinting? The doctor actually said that if he's so young that we have to restrain his arms, maybe its not the right time. But maybe its better now because he’s not mobile, he’s easier to control now than he might be in a couple of years.
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Ehhhhh, decisions! What to do? I think right now we’re going to wait. Although I really wish we could just get it taken care of (as it is a constant reminder of all the NICU trauma, and kids often ask "what's wrong with his nose?")… but he doesn’t know any better right now, and they say that children don’t understand their image until they are at least 4 to 4 1/2 years old (which is why he’s leaning toward waiting until then). But, he ultimately left it up to us, sent us home with a surgery form, and said he would absolutely do it whenever we wanted to.
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County Annual Review: We had our annual review with his county therapists – OT, Speech, and Vision. It was A LOT different than our annual meeting last year, when I left it crying and broken hearted (and we fired our OT a couple weeks later). This time it was very up-beat... all good reviews – he has met EVERY goal that was set six months ago (as opposed to last year, when he met no physical motor goals with our OT, Gabrielle… and very little with the PT). Oh sorry… there was one goal that he made of Gabrielle's in 2008 (to roll over)… when I proudly said "he did reach one goal-- he can now roll!" Gabrielle replied very unimpressed, “Oh yeah, I thought he was never going to do that!” Ugh, thanks for the inspiration and encouraging words. This is also the meeting where she said we should get Lucas Botox shots in his legs for his spastic hamstrings and put leg braces on as a baby (WAY before he was ready to weight bear, which he still isn’t quite ready for). And we can'f forget the advice to put him into a stander. Geez. I’m SO glad I followed my instinct and made the changes that we did with PT!
So back to our review this year—a checkmark in all the boxes related to language, beginning use of his left arm, puzzle shapes, functional play goals and visual/motor skills! Now we have new six month goals. We are far from caught up, but at least we get to draft new goals!
We also talked about transitioning him in April to preschool after he turns three… and I’m actually coming around to the idea. When they brought up the ida a few months ago, I said “no way… he’s not ready... due to sensory issues, he is too easily over stimulated with noise and stressed with other young children." But now, I feel differently. Other than his mobility issues and not getting around, I think he’s getting there socially. I’m actually excited about the idea of Little Man growing up and doing some typically kid things. Is he really going to pre-school??? Wow! It will most likely be a special needs classroom for the visually impaired, which will only have a handful of children, and a vision teacher on staff (this is important because so much of fine motor skills rely on vision, and it is important for the educators to truly understand when his challenges may be related to his Cortical Vision Impairment and address them as such). I think this will be a good first step – allowing him to start socialization, but on a much more low-key level to start. I think this type of classroom could be good considering his motor delays too, there will be children in various stages. We are supposed to visit the one our vision teacher recommends in November, so we'll see.
Physical Therapy: We continue to press on with PT, but its baby steps. I'm honestly getting a little "therapied-out". Its a difficult thing to keep going to week after week, and listening to the constant advice. I’m not going to lie and act like I’m not getting impatient, or that I don’t have days where I just cry about it. Its hard—sometimes I’m strong and optimistic and believe we can deal with whatever comes our way. But other days, I’m so sad that he's not progressing more quickly. Carla reassures me that this is going to be a very long process, that we have to really take notice of the small subtle changes that he is making (and he IS making them)… just nowhere near the pace that a typical child makes them. I keep having to remind myself that a typical child wasn't born weighing a pound, didn't have an injury that wiped out 20% of his brain tissue, didn't have a stroke or meningitis that damaged even more, wasn't hospitalized for five months with more treatments than I can count, and didn't have to overcome vision challenges. I know that his progress just simply cannot be compared to a typical child.
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That's it for the checkups in September, with a few more in October! Busy fall!
Lucas and Dr. Yaun... we love her!!
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