Wednesday, October 19, 2011

We have a date for surgery...

I can't believe another month has flown by. Some people have been asking when I would be posting again. Like I have said in the past, if it is a while before I post please don't worry. No news is good news :)

But now I do actually have some news...

(Jake doesn't want to hear it)

I talked to CHOP yesterday and we have a date for Jacob's airway reconstruction surgery. It is set for April 25th, 2012. Originally they mentioned doing it in January but the thought of Jacob being in a hospital on the ventilator during the peak of flu season didn't thrill me or Jacob's doctors. Then we discussed March 28th however then we would most likely miss Aidan's 5th birthday. We already missed one birthday because of hospitalizations so we really didn't want him to have another birthday without his Mommy. Mommy didn't want to miss it either :)

So we settled on April 25th. Jacob has a cardiologist appointment on November 15th (almost 2 years to the day we learned our unborn son would be born with HLHS). I am going to talk to Dr. Heydarian and see if we can schedule a cardiac echo some point between now and his surgery to make sure that his heart function is not going down due to his breathing. As long as his heart stays the same then we can wait until spring.

The nurse mentioned that they book the OR for the whole day for this one surgery. It is the only surgery done that day for ENT. This worried me thinking about how major this surgery is on top of everything else he has gone through. However Bert from Dr. Heydarian's office mentioned to me today that instead of thinking of how serious it is. Take it as a blessing that the doctors will have pleanty of time to focus on Jake and not be tired or rushing through it.

I am still praying they will be able to cut the scar tissue by going through his mouth but am preparing myself for the complete airway reconstruction. That way I won't be taken off guard. Still the thought of it makes my stomach turn.

I am looking forward to Jacob being able to run around and breathe without struggling. Now when he is active he can't catch his breath. Still he has more energy than any of us lol. I can't imagine what it will be like when he has a whole airway to breathe through.

As for the post last month about leaving our "bubble" and putting Aidan in pre-school. Well we are back in. We tried it but it was not working out. Jake and Aidan were both sick the whole month he was in. Aidan had such bad anxiety he would non-stop worry about having to go to school even on the weekends. He kept asking when he would be sick again so he wouldn't have to go. My car broke down one morning and he jumped for joy because he knew he wouldn't have to go to school. If it were just for the fact that he would scream and cry when I dropped him off I would have stuck to it but there were so many things. He cried every night, on weekends, was acting out. That plus the kids both being sick and we just were not ready. If Jake was getting every cold that went by now then he would most likely also get RSV or FLU and that scares me to death.

So new plan. For now I will continue to teach Aidan at home. He loves doing his workbooks and learning. Jake will have his airway surgery this spring. I will feel much better about Aidan being in school once Jake has a full airway and is not so high risk. Aidan is ahead of the game as far as development. He knows so much for a 4 year old. I mainly wanted him to be in school for social reasons. I am thinking we may try and enroll him in sports in the spring. Something to get him to interact more with other kids. We are also going to be doing more play dates with friends. I know the transition to Kindergarten will be harder but I know in my heart that this was the right choice for our family.

Jake is still not talking much. I asked his speech therapist to start coming twice a month instead of once. We are working on object recognition with him. Sitting him in a chair and putting objects on the tray and asking him to hand them to us, pick up the block etc. We are also still doing the baby signing times videos. He loves them! He even brings me the DVD case during the day so I put it on for him. We are hoping he will start talking once he has his surgery. He works so hard just to breathe that talking would be very hard on him. He is making a lot more sounds though. His favorite thing to say is "Yeah, Yeah, Yeah Ma'ma". He has a lot of baby babble but as far as words he isn't saying much. We are getting there though! Vowel sounds are the first step and he says all of them. He will talk when he is ready but for now I am focusing on signing and trying to give him other ways of communicating (Other than screaming lol).

Jake's motor skills are great. He is practically running now. He thinks its hilarious to hide in my room and close the door then laughs when I open it up and find him. He doesn't even mind if it is dark in there. I open the door and he is all smiles. His favorite thing to play with right now is blocks. He loves to build them into a tower then smiles and claps when he is done. He says yay. He is so proud, and so are we. He plays with trucks and trains, typical boy.

We are getting ready for Halloween. Aidan is going to be Woody from Toy Story so Jake is going to be Buzz. Jake's costume is just a pair of Buzz Pajamas but I think that will be more comfortable for him. I will post pictures after we trick or treat :)

Until then... Happy Halloween!


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