Breaking out of the bubble (Cautiously)...

Hi blog world! I know it has been awhile since you have had your Jacob fix so here is what has been going on in our world.

DEVELOPMENT

Motor wise Jake is right on track. He is all over the house. He loves playing with trains, trucks anything with wheels. He lays down and watches the wheels move just like Aidan used to. He smiles and lights up the room. His laugh just echos through the house. He has learned to blow kisses and is becoming so much more cuddly. He is OBSESSED with his shoes lol. If they are off for even a minute he throws them on me over and over until I put them on. He even holds up his feet for me to put them on.

Speech wise we are not doing so good. Jake still doesn't say much. He mainly says "mama" and "dada". He should be saying about 25 words by now but who is counting lol. His therapist is not to concerned, everyone agrees that they think it is due to his work of breathing. He works so hard and makes so much noise just to breathe that it makes sense it is hard for him to "Talk" a lot also. Don't get me wrong I am so proud of him and even if he never talked I would be proud of him. That being said I want him to talk because he gets so frustrated. The good thing is he is communicating other ways. If he is done eating he shakes his head no, he has started to sign some. He hands me things he wants like snacks and his shoes lol.

His speech therapist recommended taking photographs of objects he uses such as his binky and bottle and holding them up to give him another form of communication along with saying the words. Hopefully once he has his airway surgery he will start talking so much that I will read this post and laugh at the fact that I was begging him to talk.

 

MEDICAL UPDATE

I spoke to GI and the results from his GI probe were great. His reflux medication is controlling the reflux well so there is no need to go up on his medication. They also cleared him from a GI stand point for his airway reconstruction.

After I talked to GI I called CHOP's ENT department to discuss when his surgery will be. The nurse scheduling his surgery told me it looked like it would be January before they could do the surgery. I was not ok with this. Having Jacob admitted to the hospital for a non-emergency procedure during the peak of flu season is way to risky. I told her how I felt and asked if she could talk to his cardiologist at CHOP and his ENT surgeon to see if we could wait until spring. His last heart echo looked great and had not changed from the one they did in March. Both ENT and Cardiology had told me that it doesn't look like his labored breathing is affecting his heart at this point. They do want him to have the surgery because as he gets older he will be moving more air through and the work of breathing is not good for his heart. That being said neither doctor seemed to think it was something that we needed to do immediately.

I have not heard back from CHOP yet but I am hoping that his surgery will not be until next spring. The nurse said they do get a lot of flu patients so my concerns were warranted. The downside to waiting longer is that Jake will go through another flu/cold season with his airway. He will once again be getting Synagis shots to help protect him from RSV and he will also be getting his flu shot. Still it is always a concern especially since his airway is so small.

 

COLD AND FLU SEASON REARS IT'S UGLY HEAD

A few weeks ago the cold went through our house and the boys both had a bad cough. I immediately took Jake in to the doctors to make sure he was ok. He sounded great and his oxygen levels were in the mid 80s which is good for him. I monitored him on the pulse ox machine overnight and he continued to keep his oxygen levels up. Jake once again has shown me how strong he is. A few days ago, Aidan got the same cold AGAIN! Jake has just started coughing again but so far it seems to be pretty mild. (As I am typing this he just woke up coughing again. His oxygen is actually 90 which is amazing for Jake and his doctor said as long as his oxygen is ok then she is not worried). So looks like he will be hooked up to the pulse ox at night for the duration of the cold. Please pray it doesn't get worse.

 

BREAKING OUT OF OUR BUBBLE

After A LOT of going back and forth and discussing it with Jake's doctor and our family we have decided to send Aidan to pre-school. I had thought about it a while back but decided not to do it because I worry so much about Jake being exposed to germs. This is actually a HUGE step outside of the bubble I have been living in for so long. We got a call a few weeks ago from the Head Start program in our area about enrolling Aidan. My first reaction was no. The more I thought about it the more I thought it was a good idea.

I want my boys to grow up living normal lives. I know our lives are NOT exactly normal but I want to do everything in my power to give them both the best of everything. Yes, there will be hospital stays, doctors visits, lots of non-normal things however I feel it is my job as a mother to make it all alright for them. There is so much I can't change but this is something that would be so great for Aidan. He is the smartest 4 year old that I know but socially I worry about him. He has such separation anxiety. I can't go to the store without him crying and begging me not to leave. Can you blame the kid? This past year and a half he has had to deal with so much. His mommy has had to be in the hospital with his brother while he and his father were back at home.

I have started taking Aidan with me when we go out of town to the hospital and trying to do something fun before we go home so that he doesn't view it as another "Medical trip". That has helped but he still needs to be around other kids and do kid stuff. Aidan is such a serious child. I took him to the dentist a week ago and when the hygienist told him to open wide like a lion he looked at her and said "I'm a person". From then on she would say "Open wide like a person lol". I know that most of it is his personality. Everyone tells me that his vocabulary is so advanced and he seems like a little adult. I love that he is so smart but I also really want him to have fun. Going to pre-school will help him learn to just be a kid and will also help with the transition to Kindergarten.

I talked to Jacob's pediatrician and she agreed that we have to live our lives. We can't live in a bubble, it wouldn't be fair to any of us especially Jake and Aidan. We discussed things that I can do in order to help prevent the germs from coming into our home. When Aidan gets in the car I sanitize his hands and we change his clothes when he gets home. Is it fool proof? No. But lets face facts the boys have had two colds the past few weeks... all BEFORE Aidan started going to school. So even staying home doesn't prevent Jake from getting sick. I also talked his teacher and she is going to call me if anything is going around like the flu so I can keep Aidan home from school that week. That is the great thing about pre-school. We can be flexible. I don't HAVE to send him if it is not safe for the boys.

Aidan went to pre-school twice last week and had a very hard time with me leaving. He cried so hard it broke my heart. It didn't help that he had a cold ( I know, I was the mom bringing the sick kid to school but his teacher said to bring him and he wasn't that bad at the time.) I kept him home on Thursday because he was up Wednesday night coughing a lot. He is having a hard time, mainly with nap time lol. They don't have to actually sleep but have to have quiet time. It is right before he leaves for the day so I have been trying to pick him up before then. I know that it will get easier and honestly it is probably harder on me leaving him as he is crying. I know once I leave he has fun.

We are going to stick with it and see how it goes. If he is sick too much or it starts to become a problem for Jacob we will reevaluate but he has to go to Kindergarten no matter what next year so it is inevitable. I just have to find the balance between giving my kids a "Normal" life and protecting Jacob's health. It is a fine balance but I will do everything in my power to protect my kids and give them the best life possible!

Oh as if we didn't have a busy enough week last week our only car decided to die WHILE driving on the interstate. It was 100 degrees and there I am on the side of the road with Aidan eager to get to a birthday party. Thankfully I got it started (after 5 tries) and made it to my parents house. So on Aidan's first day of school I had to borrow my brothers car take Aidan to school, take Andy to work, get my car towed, found out they couldn't fix it, got it towed again to the Toyota dealer and found out it was the computer (Went into panic mode) then found out it was recalled, Praise GOD! So they fixed it for free and covered the (Second) towing bill!

So there have been a lot of changes going on but I really think that we are finally living life instead of fearing it. I am proud of that. We will see how it goes but I feel in my heart that we have made the right choice and that both boys will benefit from it. So here we are breaking out of the bubble (cautiously). Wish us luck!

Love,
The Baker Family