Oh, my – I am such a bad blogger!!!! You know the moments when you keep thinking you really should email that old friend you haven’t reached out to in a long time, but there’s just so much to update them on that it seems exhausting, so you don’t bother doing it? Well, consider yourselves my friends I should have emailed months ago!
So, today I am going to provide the Reader’s Digest version of everything that has happened in the past nearly six months since I gave an update and then, I PROMISE I will provide greater updates in a more timely fashion.
Back in March, I had indicated that we were clear of surgery for a few years – well…that’s a lie. We went for a follow-up appointment with the plastic surgeon on April 8th and Dr. S let us know that Gabriel’s soft palate (alllllll the way in the back of his mouth) was pulling apart again. Dr. S said that Gabriel’s clefts were so wide (the widest he’s ever worked on) that as his head continues to grow, the tissues used to repair the palate just can’t keep it together. He wants to try one more procedure before he is forced to do his last ditch effort procedure – which would mean a life of sleep apnea and other miscellaneous problems. In addition to repairing the soft palate, Dr. S is going to look at the hole again and see if there is anything he can do – though he highly doubts it and believes waiting until Gabe is a teenager will be best. And, in case you didn’t know this – the left side of Gabriel’s upper lip sticks out a little and feels like it has a hard knot in it. Dr. S thinks it could be a cyst or scar tissue, but will open it up during the surgery anyhow to check it out.
Dr. S wanted to do the surgery in the September/October timeframe, but we’ve been planning this huge, super fancy, totally awesome trip to Disney over Thanksgiving this year – so we asked if we could hold off on the surgery until we get back. I realize you might not understand the logic in this, but we have had 50/50 luck on recoveries from Gabriel’s prior four surgeries – two were fine and two were dreadful. If this is a dreadful one, I really don’t want the trip ruined for him – or worse, for us to not be able to go. Additionally, we have become very comfortable with eating and drinking with the Obturator in place, so there is really no reason to muck anything up now – especially if the palate will hold until then. Thankfully, he agreed and surgery #5 is scheduled for December 10th.
In other news, Gabriel graduated from physical therapy in June. He is still slightly behind in his gross motor skills, but considering he didn’t walk until he was 16 months old, you can’t really compare him to the average 21 month old.
We’ve been doing speech therapy now since July. I am saddened by the fact that speech does not appear to be catching on as quickly as the physical stuff. I have learned a tremendous amount though – like how it is highly unlikely that Gabriel can feel his upper lip at all because of the scars. I don’t know why that didn’t dawn on me before. I have always found it to be so strange that my C-Section scars are completely numb, so why wouldn’t Gabriel’s lip be the same?! I have also been forced to learn more sign language than I ever thought I would need to know. My boys and I spend our weekends watching sign language videos over and over trying to learn as much as we can. It’s funny that when we watch the videos, I am the only one actually practicing the signs while Gabriel and Ethan run around the room. However, every now and then, I’ll catch Gabriel standing behind me doing the signs also. I can’t say that we will be great any time soon, but we’re getting there. I think that if his speech doesn’t start improving soon, I am going to have to breakdown and look for someone who can teach us all conversational sign language.
Until then, I am taking Gabriel to his ENT today to have his hearing checked and see if they have any ideas on why the poor child has chronic sinus infections. We took him to see a pediatric infectious disease doctor (who was wonderful), but she couldn’t do any more than prescribe him antibiotics because her gut (like all the others) says that the infections are a result of him having a hole in his palate where junk continuously gets through. Man, I really hope Dr. S can fix that before he’s a teen. Otherwise, I’m buying stock in Kleenex!!
Well, that’s all for now. Sorry for my time away and the brief update today. I will do better. I promise!
