All about the Blazer...

Our little guy has been one popular kid this month.

 He has kept his mommy BUSY.

On January the 9th, he had his biggest most important appointment (I think) of the whole year. We walked away with all good news!!!!! He met with the transplant doctor at Egleston and he was very pleased with how well Blaze is doing. Blaze's liver is doing much better. His spleen is still a little enlarged, but he thinks that may be from the scar tissue on his liver (same as he told me the last time we met). He referred us to a motility specialist for his tummy troubles (feeding difficulties/ frequent vomiting). So I'm really glad that he done that. That's been very difficult for him and us. He released us from his care and we now will be under the motility specialist and pediatric GI. As long as nothing else comes up in his future labs, we won't have to make that trip to the transplant floor ever again!!!!!!!!!!!! Yes, I'm really excited about that and our Blazer (his nickname) is too!!!!!!!!!!

On January the 13th,we made the trip to the Atlanta Speech school. We met our audiologist over there for more testing. Once again the results came back as "NR" on all levels. No response in either ear. So once again they came back with "profoundly deaf" and we are okay with that. We have accepted that. The first time we heard those words we were devastated, but we've come to accept that this is how God made our baby. He is unique and perfect in our eyes and did I mention LOVED?

A whole bunch of love.

His actual hearing results...

Our audiologist is sending us back to our ENT for him to see if he will reconsider CI's for Blaze. Our ENT said absolutely not the last time we saw him. He said it was just to dangerous for Blaze to have that surgery. So I'm curious to what he will say now that Blaze's health is stable and much better. Blaze will have to be admitted to Children's for the testing and I am a little nervous because the first time they done this test he started seizing and they had to stop in the middle. He ended up being hospitalized afterwards with seizures. Anytime they put your child to sleep it is scary (at least for me). The audiologist doesn't even think that Blaze has the nerves you have to have in order to hear. Which explains why we get no improvement with hearing aids. This test will tell us more.

On January 15th, we met with an orthopedic. He fitted Blaze with AFO's and shoes. We are hoping the AFO's will straighten and strengthen his little ankles/lower legs, and help to get him off of his toes so that he can learn to walk without a gate trainer. They have to make them to fit Blazer, so it will probably be about a month before we get those. Every day is one day closer to my little boy walking! It's going to happen. I believe that with all my heart.

Blaze's been working very hard in feeding therapy. We haven't gotten past the oral aversion issues (But we will), however he has gotten really good about feeding himself. He wants to do everything by himself now. His OT is very pleased with how well he handles the spoon and feeds himself. He eats good as long as the food is baby food consistency, very bland, and cold. Our neurologist is sending Blaze to have an MRI done to see if his feeding difficulties has something to do with his brain. I had never heard of such, but obviously they have.

PT is very pleased with how strong Blaze has gotten. She said he is doing so good and working so hard in therapy. He really is doing amazing and I love to hear that from his doctors and therapist. He is just a miracle, how else can you explain it?

We met with the GA PINES lady yesterday and she asked us if we are interested in having a deaf mentor start working with Blaze and we told her that we would LOVE that. This person will come here with our sign language teacher and an interpreter to start with and then he/she will come out on their own a few times each month to spend the day with Blaze. I think it will be wonderful for Blaze to be around someone like himself and I think it will help us as we struggle to learn this new language called ASL.

Other than that, we meet with his neurologist and GI again the last week of the month to schedule for these test. It's a lot, but every day we are getting closer. I just want Blze to be the best that he can be and for life to be as easy as it can be for him. His first (almost) two years of life have been very hard and he's been through a whole lot, but I truly believe its only going to get better and easier from here! It's just got too!!!!!

Our little boy enjoys spending
 his days with

his very best buddy "JK" (our foster son),

making all kinds of messes,

and getting into EVERYTHING.

And may I add...

JK is about to outgrow Blazer:)

He's one very busy kid

but thankfully he's a

go with the flow kind of kid.