So sorry I have not blogged in a while. We have been enjoying the holiday's with our families and I have actually not been on the computer much at all. It was actually nice living a (somewhat) computer free life for a few days.
I don't even know where to start so I am going to start with the happy stuff!
We always go to my mom and dad's house to open presents on Christmas eve. Before we left Aidan and Daddy made cookies. We went to Grandma and Grandpa's house and spent time with our family and opened presents. I had a Santa tracker on my Ipod and Aidan was watching it all day to see when Santa would arrive. We packed up the car and headed home. Aidan and I put out the cookies and milk for Santa and a bunch of carrots for the reindeer (They need some love too!). Then it was off to bed so Santa could come.
Santa was VERY good to the boys this year. Of course he way they have both been beyond amazing. Aidan took everything that happened this year so well and never complained once about his mommy having to be away with Jake or having to share the attention. I am so blessed to have such great kids.
Aidan got his train table that he has been asking for. He loved the one at the Ronald McDonald House so it was a no-brainer for Santa. He also got a giant crane and dump trucks, lets just say he was in heaven. I couldn't get him away from the table at all the whole day. Of course Santa had to get some educational things like Leap Tag System and a Map of the USA that teaches him all about every state. He loves it all.
Jake's favorite toy was a penguin he got that he hits and balls bounce around and it plays music. He also got a little racers track and a few other toys.
ALL I WANT FOR CHRISTMAS IS MY TWO FRONT TEETH!
Jake got a very special gift this year. His first tooth! He has been teething so bad lately. I was starting to really worry because he started not eating well and was very fussy. Because he was not eating a lot by bottle we had to use his tube more which irritated the skin around his g-tube. So he was miserable because of his teething and the tube. I couldn't touch the tube without him screaming. I even changed it out to a bigger g-tube to see if that would help. I started putting antibiotic ointment on his skin around the tube and by the next day that looked much better. I could tell his two front teeth on the bottom were so close to popping through. Christmas day I noticed that one of them finally emerged! A few days later the other tooth came through. They are so cute. He is still chewing and slobbering on EVERYTHING but its so great to see that he is not hurting so bad.
My greatest gift was being there with my husband and my two beautiful children. Jake is such an amazing fighter. Last Christmas I did not know if he would be here with us this year. It was pretty emotional for me sitting there watching both of my boys playing with big smiles on their faces.
Jake has really been growing both physically and developmentally. He sits up really well now and sits up straight instead of in a tri-pod position. He is rolling around everywhere. If he wants something he will get it. He is trying to pull up on his own. He gets about half way then falls back down but he keeps on trying. I can't keep Jake off of his belly now. He has realized that he can get around better that way so he is always rolling onto his belly to grab and reach for things.
Jake has been trying to crawl. He wants it so bad. He gets so frustrated. He reaches and then teeters from side to side until he gets what he wants. Still trying to get him to really crawl. He is moving right along (Don't mind the pun). We are very proud of him and how far he has come. Aidan did not crawl until he was 9 months old either. I have a feeling that before we know it he will be all over the house.
Jake continues to do well with eating by bottle. He also eats baby food and has begun to try out finger foods. I started by crushing up Gerber Cheese Puffs for him and Nilla Waffers. He took a minute to realize that he could eat it but once he figured it out he could not shovel it in quick enough lol. He is getting so big.
EAR, NOSE AND THROAT
Today we went to Jake's ENT appointment. It was just a follow up to discuss the scopes he will be having in March. I talked to the doctor about Jake's breathing and how it has not improved at all. Jake's ENT doctor agrees with Cincinnati about the fact that his lungs sound great. He said it sounds like it is his vocal cords. He also said it sounds more like Laryngomalacia instead of Tracheamalacia. This is all speculation at this point. We won't know exactly what we are dealing with until we go to Cincinnati in March. Jake will be meeting with ENT in Cincinnati on March 7th and getting a scope by Pulmonary and ENT on March 8th. There are two seperate scopes which will tell them exactly what is causing his noisy and ticipnic breathing.
Laryngomalacia does usually take months to years to go away. I asked what they would do for Jake if he did have paralyzed vocal cords and Laryngomalacia. The doctor explained that they would most likely do a tracheotomy. This scares me so much. Mainly because it would be so debilitating. Now I should explain that this is all speculation because we don't have the scopes yet. Plus ever doctor that has ever seen Jake worries about his breathing but then realizes its just Jake. However this doctor specializes in disorders like this. He is also a local doctor. I would not consider a tracheotomy unless both Cincinnati and CHOP evaluated Jake.
Jacob has not had any evaluations/scopes since he was 4 weeks old. He needs to have another one and we should get many more answers now that he is older. Obviously something is wrong. He is not getting any better. If this is something that everyone agrees Jake needs then we will accept it and we will learn our "New Norm" once again but I pray, pray, pray that he doesn't need it.
The biggest thing that worried me today was talking about what will happen if Jake gets a cold. The doctor explained that a cold can be deadly for Jacob. He already is breathing so fast and working so hard on a daily basis. If Jacob gets even a little cold it can turn ugly very fast. He told me that at the first sign of a cold I need to take him to the ER. I am so angry for Jake, and so scared. I have always been very careful with Jake. I don't take him in public and I have told everyone if they are sick to stay away. I always knew that if he got sick he will be hospitalized but hearing this doctor talked today made it seem so much scarier.
It just makes me so angry. This kid already has half of a heart but his breathing makes him even more at risk. Again no one knows what will happen and I will continue to be vigilant in protecting him anyway that I can. I know he will get sick one day but I want him to be as strong as possible before that happens. So many people have told me "You should not keep him in, live normally he will get sick eventually". I get so angry because its not that simple. He is not "Normal". Its not like he wants to go out in public so why push it, it is my job to protect him and I will. People don't understand that Jake will always have half of a heart. A simple cold can kill him. Just because he survived surgery does not mean he is "All better". He will never be "All better". There is no cure for HLHS. There is also not a lot out there about kids with intact septums. These surgeries have not been around long. HLHS affects 4 out of 10,000 babies. Only about 10% of them have Intact septums. Jake is a pioneer. I don't know of any older children with HLHS who also had an intact septum. Then throw in his breathing. Like CHOP always said, he is "Unique". There may not be any "Guide book" or anything to help me find answers for Jake but there is something much more important, there is HOPE! Jake is a fighter and as long as he is fighting I can find strength and courage to face anything right along with him.
I know many people think I am a germ-a-phobe and probably go over board. So be it. If you want to see Jake you and anyone you live or come in contact with frequently needs to be healthy. Please if you feel sick at all even if you think its only allergies don't come by. I know you may think its not a big deal but it is. For him it could be life and death. If you come down with something and have been in contact with Jake I need to know. I know everyone loves Jake so please help me protect him at least until we get some more answers.
I intend on keeping Jake inside through Cold and Flu season. We won't be going anywhere except his doctors appointments. He is getting monthly RSV shots and has had his flu shot. I am doing everything I possibly can. So although I am scared I will push that aside for Jake. I have said so many times that I won't live his life fearing his death. I am going to celebrate every second I get with my beautiful miracle. We will find out more in March. Until then I am going to pray for the best!
Merry Christmas everyone and a HEALTHY new year to all!