Monday, June 11, 2012

Just when we get settled... it's time to head back.

I am SOOOO sorry I have not wrote in so long again. I promise I mean to but life happens and I just have been so busy lately that unfortunately the blog has been neglected. I think I take for granted that everyone sees my posts on FB and forget that not everyone is on facebook. So for those of you who have been waiting patiently for an update I apologize. I have been working on some pretty exciting projects and I can't wait to share them with everyone but this post will be long enough with Jake's update so I will do a separate post soon letting everyone know what has been keeping me so busy!

Now for the reason you come here... Jake Update! 

Jake is doing wonderfully! He has made really great progress since we have been home. The biggest change is he is interacting so much more with us. Before we were concerned because he had a blank expression on his face a lot of the time and didn't look if someone came or left. He pretty much could care less what was going on around him. Now he is engaging and waving and interacting with everyone which is so exciting for us. He is also signing appropriately which is so nice. Before he used to sign just to sign but didn't really use it to communicate. It was kind of like baby babble but with signs. Since we have been home he is using it to tell me his needs. His tantrums have pretty much gone away completely (Other than typical 2 year old fussiness). Tonight he even signed "Time Eat" which made me so excited because he put to words together appropriately. That is the next step in his signing. If you think about it like a child who learns to talk. First they babble, then they start using the words appropriately and then they start putting words together to make sentences. Jake is following the same progression just using signs. He is trying so hard to be able to communicate with us more and I am such a proud mama. He makes up his own signs sometimes which I don't always understand but I try to learn from him and eventually figure out what he is trying to tell me. He started signing Banana but he wasn't using the correct sign. I wasn't getting it so he walked me over to the counter and pointed lol. Then I knew that what he was telling me is his sign for banana. He is a pretty smart kid :) He made up a sign on his own for an iPad which is him holding up his hand flat and then using his other hand to look like he is pushing buttons on it.  I know most kids his age are talking a lot by now and he is delayed in speech but I have to say I am amazed by his ability to overcome his disability and find ways (His own way) to communicate with me. He is seriously my hero and I am beyond glowing with pride. 

I was concerned for a while when we got home that his strider was returning. After sending video's to his surgeon at CHOP and working weekly with his speech therapist I am not concerned anymore. CHOP said that there was nothing they heard that was concerning to them and that they agreed with our speech therapist here that Jake was just finding his voice. He likes to hear himself talk. He is starting to try and talk some. Jacob could possibly have Apraxia of Speech. It is commonly seen in children who have a rough start in life. Apraxia is basically when the child can understand what they want to say or what you are saying but they have difficulty communicating it. It is something that can be overcome but we basically have to retrain his brain. This starts at a very basic level where we first tried to get him to open his mouth when we asked. Now we are working on vowel sounds. He has started doing those but still keeps his lips pursed most of the time. 

The other day his speech therapist was here and I was telling him to draw a circle on the chalk board. He drew would then draw a circle (Which by the way is a 3 year old skill) and we would clap and say yay. One time we didn't say yay quick enough and he turned around and in a very deep crisp voice he looked at us and said "YAY!". Our mouths just dropped because the sound was so amazing. It was so crisp and not raspy like he does sometimes. Plus he was SPEAKING, not just making babble. That same day he was signing hat and tried to say it, he said "Haa". He is trying and that makes me so happy. I have always said that even if he never talks we will still be so proud of him and we would teach our whole family to sign for him. But seeing him try to communicate and seeing how happy it makes him really melts my heart. 

Brynn (Jake's speech therapist) and I have talked a lot about the fact that Jake probably could not hear before his surgery. His breathing was so noisy it was probably hard for him to hear anything but his own sound. We had a hearing screen done and they said he could hear loud noises but it was inconsistent with the quieter noises because of his breathing. The hearing specialist also told me that for kids who have to work so hard to breath like Jake did can have their ears pop a lot because of it so that can also affect hearing. So he may not have interacted much before because he couldn't hear us. When I would get frustrated because I would call his name 10 times and he wouldn't turn around, maybe he didn't hear me. Since we have been home he does "Hear" me. I call him and he comes. When I say we are going bye-bye he gets up and goes to the door and follows me to the car instead of running the opposite direction. The other night I told him it was time to get out of the bath and he stood up and held his arms up for me to get him out. This may sound like small stuff to everyone else but for us it is HUGE. To be able to know that Jake understands me and see him progressing so much it just is such a relief for me. I feel like we can connect so much better now. I know we have a long way to go but just in the past month Jake has come so far. 

Physically Jake is back to normal. He is climbing on everything. He is running and playing better than ever. The black spot on his head where the skin died from the infiltration is still there but has started to lift on the edges. I am kind of afraid for it to fall off. I have no idea what it looks like under there. I also noticed the other day that he is starting to lose his hair across the bottom of his head where all of the fluid was. I got upset when I noticed the bald spots. I know it is very minor compared to everything else. It is hard to explain but when you have a child with a life threatening illness you are on edge all of the time. You question everything worrying that even the little things can be big things. I don't dwell on his illness, many days I don't even think about it. But when you notice something your mind starts racing, after everything he has been through how can it not. Then you question is it something, is it nothing, should you call the doctor or just wait and see. So there he is playing in the bathtub and I am staring at the shape of his head worrying. Thinking his head looks big in that area and maybe he still has fluid under his skin and that is why the hair is falling out. Then I started comparing his head shape to Aidan's which is silly since everyone has a different shaped head (Yea, I probably need therapy lol). After a few moments of panic I convinced myself that his head shape is fine and there is no fluid, the hair is falling out because of the infiltration and the damage the fluid must have caused to his hair folicals when it was swollen. I just pray that the hair comes back eventually because Jake has had to deal with so much. Yes this is minor but there are so many things that they add up and I don't want this to be yet another thing for him to have to deal with. 

We finally have gotten settled and now we are planning to head back to Philadelphia. Andy and my mom have to work so Jake and I will be heading to Philly on our own this time. This will be my first time driving there by myself so I am a little nervous about not having anyone to help entertain Jake in the car but we can do it lol. Aidan will have to stay in WV though because he is not allowed to be back in the Cardiac Prep and Recovery Unit and I have to be back there with Jake before and after the scope. My parents and my sister will watch Aidan while Andy is at work. I have to head up on Wednesday. Jake will have his bronche on Thursday. He should be outpatient and be able to go back to the hotel that night. Friday morning we will head back to CHOP and meet with Hematology. They will do a ultrasound of the clot to see if it has shrunk any. Then we will go for a Swallow Study to see if he can start eating by mouth again. He is doing good with the purees but still misses getting to eat like he used to. Please pray everything looks good! 

Provided everything goes as planned we will be coming back on Saturday. Then we will have to go to Cincinnati every 2 months for follow up bronches and ultrasounds of the clot. It is going to be a very long year! I really hope the clot is shrinking but even if it does shrink he has to remain on the lovenox shots for at least 6 months to a year and they are talking about keeping him on it until his Fontan which may even be 2 years away. His poor little arms and legs are so bruised up from the shots. I can't wait until he no longer needs them but it will be a while. I think I took for granted how "Normal" our life had become. Now I feel like we have been thrown back into the pre-glenn phase where he is on more meds and tube feeds. Worrying about him aspirating. I can't tell parents of healthy children enough to never take anything for granted. I wouldn't trade any of it for the world though. Jake is worth all of this and more. He is amazing, my miracle. My hero. 

Please continue to keep my little warrior in your prayers. I promise to give updates on Thursday and let everyone know how he does. 


Aidan and Grandpa planted Aidan his first garden!


1 comment:

  1. He is so cute, and impressive! Our two year old is not quite putting the signing together with actual vocabulary usage, so way to go Jake! :)