Getting Back on the Blog Train.

Sunday, my sweet peanut is turning 3, and I am ready to get back on this blog so that everyone can keep up with my little superman's progress. After a tough moment at a basketball game this weekend, I got to thinking...I need to help my friends and family understand exactly what my little man is up to. I went to cheer on my sweet nephew, Gage, this weekend and had a young lady ask if Baker had Down Syndrome. After saying no, she then proceeded to ask what did he have and I simply replied, nothing. Still pushing, she then asked, "Well, what is wrong with him?".


My answer to that question is that nothing is "wrong" with my child and that he is absolutely perfect. Baker suffers from Global Developmental Delay due to hypotonia, which means low-muscle tone. A joke that I quickly follow up with is that since I have had Baker, I, too have low-muscle tone. ;) We have done every test imaginable 2 EKG's, 2 brain scans, a muscle biopsy and tested over 600 of Baker's genes to find absolutely nothing "wrong". This is great news, but is hard to explain to those who don't quite understand why he can't walk or talk and those who want to put a label on my sweet baby. At this time the neuro-geneticists are not exactly sure what is causing his low-muscle tone. The genetic testing did conclude that there is a secondary Mitochondrial Disfunction of sorts that is present, but they are not exactly sure where the disfunction lies. My thoughts are - "disfunction"...this means his mitochondria could start functioning properly at anytime. That's my "mommie-positive prognosis". The good news is that he is constantly progressing at a steady rate and continues to reach his therapy goals.


Baker is the sweetest most lovable little thing. His personality is shining and he is constantly progressing every day. He is currently in 5 therapies a week. 2 PT, 2OT and 1 speech. We are in the process of transitioning Baker into Pre-school and are so thankful for the Babies Can't Wait Program that we have been a part of since Baker was 9 months old.


A little history, when Baker was at his 9 month checkup, our amazing pediatrician, Dr. Steven Elliott, from Piedmont Pediatrics stated that Baker's muscle tone wasn't where he wanted it to be. At that point we applied to BCW (Babies Can't Wait), Georgia's Early Intervention Program, and once we qualified, Baker began his therapy from there. Because Baker was 2 months early, I kept putting him in the preemie category for so long and could not imagine that after such an "eventful" pregnancy that there would be another challenge lying ahead. I noticed that he never put any weight on his legs when I would try to stand him up. He wasn't babbling, sitting up or crawling. I still remember taking him to a sweet little baby/mommy class and that was the first time that I realized that we were on a different path. I was so overwhelmed after that class that Baker and I both went home and took a 3 hour nap. It was as if it was all beginning to become more clear that Baker was going to need a new game plan. We worked with BCW and created TEAM BAKER and we are still going strong to this day. His therapists, Valerie Squillario, Kelli Robeson and Dawn Scoggins are simply amazing and we have loved working with them for the last 3 years. As he is now transitioning into preschool, we will be adding new team members and I can't wait to watch Baker continue to crush his goals.


Baker was born a fighter and when I started understanding what he had to go through, I hated that everything was so hard for him. But Bill said to me, "Baker doesn't know its hard". And I realized that was exactly right. This is what he is used to and he continues to smile and have such a great attitude every day. After starting therapy, he sat up for the first time after 2 weeks of PT at 11 months. He began pulling up and cruising on his own this past July at 2 1/2 years old. He wears AFO's that support his ankles and with his "Magic Shoes" on, he can conquer the world.


Baker is currently working on walking and he has the sweetest ride at The PPC Nursery. He uses a gait-trainer called a "Crocodile" that he has been "driving" since around Christmas time. He and mommie have been working hard on getting him into shape. With all of this cold weather, the best place to practice is the grocery store. The first time we went, we spent about 45 minutes in the produce section. This is also a GREAT place to work on speech and vocabulary. He loves looking around at all of the fruits and veggies. The 2nd time he got all the way to the meat section and yesterday he walked all the way past the dairy section. His endurance is improving every day! Next up, COSTCO! hahaha.


My little man isn't talking yet but he sure is trying. He uses some sign language but after a 10-month hiatus, he is back to saying "MA-MA" and this mama couldn't be happier. Sometimes, when kids have speech apraxia, their words come and go and the only two words he has consistently said are Mama and Elmo. (What else could you need?!hahaha) He is completely in love with Elmo and he goes everywhere with us.


With his 3rd Birthday approaching, I can't believe how far we both have come in the last 3+ years. We have been in this fight together from day one and I am his biggest fan. I have learned so much in these past few years and have loved every second. My little superman inspires me everyday and I am forever Team Baker. Keep Baking, Baker...Mommie is super proud of you!