First of all, another view of this boy standing. He stands constantly now! He just got it. He's trying to cruise around furniture already, and standing straight up even holding on with just one hand. He's already causing destruction! The other day Madeleine was eating a bowl of grapes on the couch and he came over, stood up, and threw the bowl on the ground, scattering grapes everywhere. And now he can get the small box of little, miscellaneous toys off the toy box and scatter it everywhere! Silly boy!
So the surgeon appointment. Dr S. was thrilled with his size! His speech therapist wrote a three page letter to him about his progress. He was very happy with how he's eating. He did say that he wouldn't be able to use his paci or bottle after surgery, so it's better to get him off of them before. This really makes me sad! He loves his paci and bottle. And I love giving him his bottle, especially in bed in the morning and rocking him before naps and bed. But he's working on his cup and making progress, and he only gets his paci in his bed now. Does anyone know how to get him off his paci? He loves it. He puts one in his mouth and holds one in his hand while going to sleep. If he wakes up at night and can't find it, he cries until we come stick it in his mouth. This is NOT gonna be fun.
So the surgeon said that we could do the surgery in February. He'll be 14 months. He is going to see an ENT in January to evaluate whether to do ear tubes at the same time, while he's already under. Even though he has only had 2 ear infections in his life (VERY good for a cleft baby!) they might do it to prevent future ear infections - apparently the eustacian tubes are attached to the muscles they pull together during the surgery, causing them to flatten out, so kids can have trouble with ear infections afterwards. He's also going back to the surgeon in January, and they'll tell us everything we need to know. I do know that he will have to stay in the hospital probably one or two nights, until he starts eating there. He said some kids refuse to eat or drink and then they have to stay longer. He'll have to wear arm restraints for THREE WEEKS to prevent him from putting anything in his mouth. And he also has to eat very soft foods for 4 weeks - off the side of a spoon.
This is all really scary, especially thinking about him being in pain and recovery being hard on the whole family. But after it's over, he'll be able to start making lots more sounds, learn words, and eat a LOT more different kinds of food than he can now. I'm definitely looking forward to that. I'm trying to focus on that instead of thinking of him being scared and in pain. Poor baby. :(


8 comments:
Sounds like a very informative appointment! Mr JB's bf's son was born with a cleft lip and palate and he had to wear the arm guards after his surgeries. Now that he's almost three he is thriving! You can't even tell he had issues!
Leo's lucky that he won't remember his surgery!
I know all of that is both encouraging and scary for you! I'm so glad you are in good hands and Leo will have the best treatment. It's too bad about the arm restraints... couldn't they fit a hockey mask for him instead??? :-)
Hang in there, he will do great and probably be much less bothered by it all than you will!
Oh, mama, I hear your pain! So glad it will soon be a distant memory, and that Leo will not even remember it. God bless that sweet boy, and thank goodness he has such loving parents to make sure he gets exactly what he needs. :)
The paci thing... no advice. Can you wait till just a week or so before? Lump all the "bad stuff" sorta together? I just wonder if it's better to have one traumatic thing instead of two separate ones. Just thinking out loud.
I don't know about that paci thing, I think I'd want to get him over it now, because he'll want it for soothing purposes afterward...or maybe it would hurt him too much and he wouldn't want it....pray and ask Mother Mary, she will take care of it. My 2nd daughter loved a nuki but she had it til she was 3 and then gave them all to a friend who had a baby...worked like a charm...now my current 2 year old loves a nuki.
SO glad you wrote about this, because I'd been wondering if a palate baby would even take a nuki, then I saw Leo last week with a nuki, and bought new ones for this baby just in case...now I won't even try it.
Oh, please know I'll be praying for you and Leo. You've come so far.
does he eat normal foods now? Or do you have to use only baby foods?
I had an ultrasound today, things didn't go well...I'll write about it in a little bit.
So much us mamas need to go through, huh?
Sounds like some sleepless nights ahead, hoping and praying all goes good with that for you too.
I cannot imagine going through this. My heart breaks for all of you.
I'm thinking the same thing as Leila with the paci. Can you wait until the absolute last minute rather than having to go through two traumatic events?
If not, I've heard snipping the tip of the paci works. However I think that is usually with older babies. I don't know if it will work for Leo's age. May be worth a shot though.
Glad it's coming up and you got so much info. But geez, that recovery period sounds rough. Like Jellybelly said, though he won't remember it and it will probably be worse on you:)
I'll be praying! Just think of how it will affect his life long-term, for the better...and he won't remember the surgery at all.
Oh how it breaks a mama's heart when her child suffers! I was hurting just to read what he and you as his mom, will have to go through. :( Ask the Blessed Mother for help. It sounds like a miracle is in order.
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