Saturday, November 19, 2011

Hello Blog World...

Once again life has taken over and I have not had much time to blog. The family is doing great and I have lots to update.


Jacob and Aidan went trick or treating in Grandma's neighborhood. Aidan was Woody from Toy Story and Jacob was Buzz. Unfortunately it was pretty cold so Jake went to a few houses then we bundled him up in his stroller. He still seemed way to cold for my comfort so I had grandma take him back to her house while we hit the neighborhood with Aidan. Andy and I loved watching him run from house to house with such excitement. He even hiked a pretty big hill to get to a house. It was a great night for the whole family, even Jake who spent most of it in the nice toasty warm house lol.
Cardiology Update

Jake went to see our favorite Cardiologist the other day. As usual, Dr. Heydarian said how impressed he was at how well Jacob is growing and how good he looks. Jacob wouldn't sit still and showed off his high energy. We discussed him getting an echo to make sure that he can wait until April for his airway surgery. CHOP was ok with waiting that long as long as we had an echo a few months before to make sure his breathing is still not effecting his heart. Dr. Heydarian said if he were having lower heart function he would not have as much energy as he does. Let me tell you Jake never stops. From the time he wakes up to the time he goes to bed at night he is constantly going. I can barely get him to take a nap anymore. I lay him down and walk by five minutes later and he is standing up laughing at me. Such a silly kid.

So I will update when I find out the date for his echo but our little rock star is doing great!

Cold, flu and Synagis Season

The dreaded cold and flu season is here again. This is the worst time of year for me because I worry so much about Jacob getting sick. I blogged a little while ago about him having a cough and doing great with it. Well he had a cold a few weeks ago that made that cough look like nothing. Jacob and Aidan both came down with a cold around the same time. It was a few days after halloween. Jacob was so congested and had a croupy cough. I was really scared about his airway. Luckily he already had an appointment scheduled to get his Synagis shot.

The Synagis shots are monthly shots that act as an antibody for RSV. It doesn't mean that he won't get RSV but it does protect him from it and if he does get it then the case is usually much less severe. As you know RSV puts healthy children in the hospital. For a child with a heart like Jacob's it could be deadly. Because of this he qualifies for the shots. You have to practically jump through hoops to get your child qualified because the shots are so expensive. Thankfully we have a medical card for Jake as a secondary insurance. We found out that after our main insurance pays their portion our co-pay would still be $926.00 a shot! That is almost $1,000/month. He needs to get them through March. It is crazy. I mean our kids need this protection and it would cost insurance companies a lot more if they are hospitalized... but I digress.

So I took Jacob in for his appointment and they ran an RSV test just to make sure that was not what he had. Thank God it came up negative YAY! The doctor said that his lungs sounded fine so as long as he keeps his oxygen levels up he should be ok. She wanted us to try Pulmacort breathing treatments to help with all of his croupy cough. Jacob was not a fan of the nebulizer. He screamed bloody murder anytime you came near him. So we did the breathing treatment when he was sleeping. I swear he slept with one eye open because he kept waking up so I didn't get much in him. The next day he lost his voice. This freaked me out because if you have ever been around Jake you know how loud his breathing is. To hear him silent made me feel like he was not breathing. I kept him hooked up to the pulse ox most of the day and the kiddo held his oxygen levels around 86! That is higher than he normally is when not sick. He is usuallly around 80.

We decided not to do the pulmacort because of the no voice issue and within a few days he started getting better. I must have asked Andy if we should take him to the hospital 10 times those few days. I called his doctors and everyone agreed he would be exposed to more germs there and they would monitor him just like I was doing. Turned out everyone was right and he did get over it. Still I was worried sick. Have I mentioned I hate this season?

His cardiologist said that until he gets that airway opened up we need to play it safe. So we are once again putting ourselves in our little Baker bubble. I ask all family and friends to please not come over or invite us over if you or anyone you have been in contact with recently is sick. If you do get sick and were recently around us I would really appreciate it if you could let me know so I can watch out for symptoms with Jake.

The scary part of our world is that it is the little things that sometimes take the lives of hypoplasts. Just recently a 4 year old passed away from dental work. He had made it through 3 open heart surgeries. Hypoplasts tend to have problems with their teeth rotting from all of the medications, tubes etc. Jake will have to be on antibiotics even when he has a cleaning to protect him from infections. This little boy passed away when he was getting his teeth capped. So if I seem overprotective... I am. Wouldn't you be if it were your child? I have seen families lose their children from colds, the flu, you name it. It is just the reality that we live in. Things are much harder for our heart kids. I need to do whatever I can to protect him. My kids are my life so if it means taking extra precautions and not going out much during the winter, so be it!

Just Jake

Jacob is growing up so fast! He still hasn't progressed with talking but he is signing a lot more.

He signs:
All done
boat (kind of)

I can't tell you how much I love that he is taking to signing. He watches "Baby Signing Times" all day long. If it isn't on he brings me the DVD or the remote and signs "Baby signs". It just fills me with pride. Aidan also has gotten really involved with it. He gets excited when he learns new signs. Even I find myself signing throughout the day to help Jake learn. I really think it is making a big impact. He seems to really be showing us that he understands what we are saying.

Jake also likes to dance now. He basically stands still but moves his arms back and forth really fast and laughs. He obviously inheritted his dancing skills from his daddy lol (I am going to get in trouble for that one). Seriously its really cute.

Jake copies pretty much anything he sees us do. The other day Aidan bounced on the bed so now Jake likes to go on the bed or the couch and he lifts his arms up so his bottom comes off of it a bit and he laughs so hard. You say bouncy and he just bounces away. I of course am right there the whole time so he can't fall off. It makes me nervous but at the same time he is just getting this personality and I love it. Have I mentioned how much I LOVE my kids. They are just awesome.

Photos of the kids have become so important to me. I have always had pictures of our family all over my house but it has become even more important to me with everything we have gone through with Jacob. I guess I just want to hold onto each moment. We recently won a free photo session with Kristi Dornon from Pikture this Photography. She took beautiful photo's of the boys at a near by park. These photos were taken at Pumpkin Park in Milton WV. It is so close to our home and I never knew how beautiful it is there. I want to share some of the pictures with you. You can see all of them by clicking here. She did an amazing job. Thank you Kristi so much!

Told you they were beautiful! If you are interested in having her do your photos you can click the links below.

Kristi's Facebook Page
Pikture This Photography

Well I think that about covers what has been going on with us. We are looking forward to spending Thanksgiving with our family.

Happy Thanksgiving!