Jacob's Journey: August 2012

This blog post is dedicated the greatest man who ever walked this earth, my Papa.

George Cunningham lived 90 amazing years and I am so blessed to have had him in my life. He served our country, worked hard to provide for his family and was the best grandfather I could ever ask for. He never complained and always had the most contagious smile. The earth lost a great man but heaven gained the perfect angel. We will see each other again one day papa. Jacob now has the best guardian angel anyone could ask for. You will forever be in my heart.

I realize it has been over a month since my last blog post. My dad reminds me DAILY that I need to update the blog. I am sorry that I take so much time between posts but as you know "Life happens" and I don't get to jump on here as often as I would like. I do love that Jacob has so many fans and am so grateful that you care so much about our little guy. So lets get to it shall we!

Jacob's scab finally fell off of the back of his head. It looked pretty nasty at first (I will spare you the pictures) but thankfully it healed up very nicely and looks great now. He is still bald along the back of his head but I think it will all start to come back now that the area is healed.

We have been traveling so much the past few months. Philadelphia twice and 2 weeks ago we went to Massachusetts for my Grandfather's funeral. The boys did so well on the trip which is amazing because it was 16 hours in the car on the way there and 14 on the way back. It was so nice to see all of my aunts, uncles, cousins and most of all my nana. I missed everyone so much. It was very hard not having my papa there with us but I am so glad I was able to be there to see him one last time and say my final good-bye. The trip was really good for Jacob's speech therapy. The time in the car allowed us to have a captive audience with him to work on his signs. My sister was awesome and worked with him so much. Se used his baby signing time flashcards to teach him new words. The funny part is he memorized the order of the signs. He started telling us the opposite word whenever we asked him what a card meant. So now if we ask if he is hot, he responds with Cold. If we say Jake are you Dirty, he signs he is Clean. I was feeding him earlier today and told him it was hot. He looked at me and signed "Cold" lol. So it is kind of hard to teach him the meaning but it is still progress and something for us to work with. It was also great for him to be in a house full of people talking. It really encouraged him to jabber and try to talk. Overall he made great progress during the few days we were there.

Jacob is showing progress daily with his speech. It seems slow at times but when I look back to where he was prior to his airway surgery it is amazing that this is the same kid! He has been trying to say vowel sounds for a while now but a few weeks ago he started saying Choo-Choo. At first it was more like Wooo Wooo, then shoo-shoo but now he is making the "CH" sound which is not an easy sound to make. When he does it he puts his arm in the air and pulls down like he is ringing a bell. He does it every time he sees a train or if we say "Chugga-chugga". He is in the Thomas the Train stage big time. He would watch Thomas the train and Yo Gabba Gabba all day if I let him. He LOVES them. He grabs my hand brings me into his room then points at the TV and signs train. He won't fall asleep unless Thomas is on in the background. I have to sneak in once he falls asleep and turn it off. If I try to put him to bed without it he will scream and cry and yell Choo Choo until I put it on. He is so stubborn and strong willled, I have no idea where he gets that lol.

Jake has also started saying Hi (Hi-yee). I am always over pronouncing things to try and get him to say the words. It may have backfired a bit because instead of Hi, he says Hi-yee lol. It is really sweet. He waves to you as he says it. He still waves backwards like he is waving at himself. He gives you this big old grin. Too cute. He has said Bye a few times. Today he came into my room and signed "Yes" while saying "Yeah, Yeah, Yeah" and then he did the sign for "No" while saying "O, O, O". He was so proud of himself and I was jumping up and down I was so excited. He also FINALLY started saying "Mama" today. I have been trying to get him to say that again since his airway surgery.

He said the letters A, O, I and C. He also says yo, awe and tries to make up words all day long. He jabbers all day which is normally what infants do before they start talking. Jake never did that before because he never tried to talk when he had the labored breathing. He jabbered with signs then started signing appropriately. So now that he has had the airway surgery he is starting over verbally and is learning to speak. It is a very slow process but he is making progress and I am so proud of him. He is also learning more signs everyday and also learning to put multiple signs together. I think the more he learns the more excited he gets to try new words and signs.

Speaking for Jacob is much more difficult than it is for other children. Even though he had a complete airway reconstruction his vocal cords still are and always will be paralyzed. He can make sound but it is more breathy. It is hard for him to prounounce words. He can make shorter sounds easier than holding the sound out. It is much easier for him to mimic the tone of words rather than pronounce the word. He has started signing "Outside" and when he does he almost humms the word. It is really hard to put down in writing so I will have to get video of it. He basically will hear me say a word and then he will hum the syllables and sign. It is still huge progress for him, he is trying so hard to talk.

I have also noticed that it is easier for Jacob to say words if he makes a deep voice almost like a growl. Jacob was bit by a mosquito last weekend and his eye swelled up really bad. Aidan made a joke that he looked like a pirate and said Arg. After that Jacob would laugh and say Arg or Yo in the "Pirate voice". He started saying other words in that voice and I noticed it was easier for him to pronounce some letters when he would use the deep voice.That is actually how finally got him to say "Mama". I said it in the pirate voice and he repeated it. I am not sure if he can just get more sound or what it is but I am going to talk to his speech therapist about it. Not that I want Jake going around talking like a pirate or growling at people but it is a start lol.

Jacob's swollen eye from his mosquito bite.

Jake still gets very frustrated because he can't communicate as much as he would like. He gets angry if you don't understand what he is trying to tell you. It is getting easier because he is getting better at showing me what he wants but it is still hard, for both of us. I want so badly for life to be easier on him. Selfishly I won't deny that it is hard not hearing "I love you" from him. I see other moms talk about their child and how much they are talking and how they run up to them and say "I love you mommy". Don't get me wrong I am so happy for them but sometimes I wish things were not so hard for Jacob. But then there will be moments when Jacob will run up and give me a hug and a huge grin and I know he is telling me in his own way.

We reached another big milestone. I finally felt comfortable enough to have Apria come pick up all of the Oxygen tanks, the big stand alone tank and the concentrator. It was a great feeling to see those taken out of the house. They have been here for two years. We are going to keep one small travel tank and the pulse ox machine. I don't see me getting rid of those anytime soon. I can pretty much guarantee that I will keep the pulse ox machine until at least 6 months post-fontan.

We will be heading to Cincinnati in about a month or so to meet with hematology and get another ultrasound of the clot. We will also be discussing the plan for his lovenox shots. Hematology generally will take kids off after 3 months of therapy but Jacob's cardiologist here and his Cardiologist at CHOP want him to be on it longer, most likely until his Fontan. Jacob is very high risk so we need to make sure he doesn't get any more clots prior to his next open heart surgery.

While in Cincy Jake will also get a cardiac echo. I have been a little worried lately because his lips have looked more "Blue". His oxygen levels have also been dipping into the mid 70s some which is not his norm. They always level out around 80 though which is normal for him. I spoke to his cardiologist and Dr. Heydarian said as long as he is leveling out around 80 then we should not worry. If he starts dipping and staying in the lower 70s or below then we may need to push up his Fontan. They want him to be at least 15 kilos for the fontan and right now he is about 12kilos (28lbs.). Right now the plan is to have his Fontan next year or possibly 2014 if he can wait that long. I am praying he can because studies are now showing that HLHS patients are showing signs of liver issues and the Glenn circulation is much better for their liver. CHOP is currently researching this but the hope is that if they wait as long as they can for the Fontan that the patients may not have as many liver issues like they are seeing now. I am kind of nervous for this heart echo because he has been more "Blue" lately so please pray that his heart function looks good. Jake has already had one major surgery this year so I do not even want to think about the Fontan yet.

We are also going to try and participate in the Neuro Cardiac Clinic while we are there. This is where Jacob would spend a day seeing about 6 different specialists who would evaluate him and give us advice on therapy that he should be getting. Hypoplasts are at risk for developmental delays because of the low oxygen levels. We know Jake is significantly delayed in speech so I think it is even more important that he participate. They will see him once a year prior to him going to school to help prepare him and make sure he is getting the most early intervention possible. I love that there are so many great programs for our kids.

I can't believe how fast these boys are growing up. Aidan will be starting Kindergarten in a few weeks! I hope to find a local "Mommy and Me" group for Jake and I to go to while Aidan is in school. I think having him around other kids who are verbal will really help him with speaking. It will also help him socially. Jake is a bit of a bully when it comes to other kids and sharing. Aidan being in school will give me more one on one time to work with Jacob.

Here are some pictures from our trip to Massachusetts.