Kaleb's Angel

I'm writing this post about amazing parents that I met yesterday. I look up to them and learn from them and grieve for them. They are Jeannette and Steven Adamyk. I believe I started talking to Jeannette when Kaleb was around 5ish months old through a Trisomy group on Facebook. She also had a son named Caleb who was born with a Trisomy (T18, Edwards Syndrome). I found out that she lived close to me and I knew she could help me on my own Trisomy journey. Since Kaleb was born I feel that all Trisomies are the same regardless of the name given to them or the chromosome number they represent because to me "trisomy" is just a name for many different medical and development issues that a child with Trisomy has. I do know that Trisomy 18 is one of the scariest and for a short time was told that was most likely what Kaleb had and that I should think about terminating my pregnancy because those children are "not compatible with life". Jeannette has spent so much time and research to show doctors and others that work with our children that having Trisomy 18 or any Trisomy is not something that automatically means that our children will pass away right after birth. I admire her and respect her. She recently lost her wonderful son, his third birthday was coming up. Caleb means so much to so many people and shows the "medical professionals" that they should not be labeling these babies as "not compatible with life".

What does that mean anyway? The phrase just pisses me off to no end.

I can't imagine what she and her family are going through right now but she has given me so much hope and comfort whether she knows it or not. When I first spoke with her on the phone months ago it felt so nice to hear someone talk about the same problems in the government that I had dealt with as well when Kaleb was born, especially when it comes to disability benefits for our children and the fact that we can't get those unless we quit our jobs and live off of the government, which to some of us is not an option.

I am behind Jeanette 100% and plan to write an information letter about Kaleb to send with Jeannette when she goes to our capital in October to speak about the additional help our children need and they are not currently getting.

 Me and Jeannette

Kaleb and Jeannette sharing a moment

Such a happy little boy, Caleb <3


Surgery, Trisomy, and Sadness

Kaleb had his last surgery on his feet on August 24th. The surgery went really well and only took about 10 minutes. They were only taking his cast from his first surgery off and putting another one on. Kaleb didn't even need to be intubated, only gas. I was so proud of him! Yesterday was two weeks later and Dennis and I went to his Orthopedics's office to get his cast off, for one last time. No more casts in the future (at least at this point) and I was so excited to see his "new" foot!

We realized recently that Kaleb has had casts on both feet or one foot for the past 6 months of his life, he is only 8 months now. Wow. I haven't been able to bath my baby or swim with my baby...and my baby LOVES the water. Most of the casts were on both feet however he only had a dislocation in his right foot. The medical terms for his feet deformities is "Congenital Vertical Talus"...which for some reason I only started researching TODAY and found that it is so rare that only 273 cases of been reported. Anyways, towards the end, before his first surgery he only had his right leg casted due to the dislocation. The first surgery went well and he was a total trooper. My little hero! All of this time I've falsely been hoping that the casting and surgery would just fix everything and make his feet "normal" (damn...I hate that word). When his cast came off yesterday I basically saw the same foot that I saw before the casts went on. Yes, it looked better....if that's what you want to call it. But it still wasn't right. I couldn't imagine how anyone could walk on those feet and it brought me right back to my pregnancy and Kaleb's birth. Everything was so uncertain. I try to stay positive because I just don't know and although we have an amazing very well known Ortho doctor in Orlando, I still question what he says. I asked him how Kaleb would be able to walk, especially since his left foot probably won't be getting a brace later on and only his right foot wood. His response was that he would learn to balance on it. That's great and all but that's not what I wanted to hear. I wanted to hear that he would walk without a limp, run in PE class, and do all of the other things that most of us take for granted. It's hard to be reminded of the uncertainty of Kaleb's future. He is such a great baby, funny and happy and smiles all of the time (unless he's hungry, don't mess with him when he's hungry...he will eat you alive). But then I think about his future. Will kids make fun of him? Will he be able to be in soccer, hockey, football or whatever he wants to be in? Probably not.

I try to keep positive, I really do. Kaleb has already beat SO many odds and medical conditions have just randomly "healed themselves" and I am so proud of him for that. I'm not able to go to his OT and PT therapy for the most part due to my work schedule but I was able to go last week and I just cried (apparently I'm a cry baby). The smallest things he did were just so amazing to me. It was great to hear his therapists praise him for doing something like sitting for 10 seconds unassisted that most of us always took for granted with our children. One of the biggest things that reminded me that he is "delayed" was when his hands were always shut and he wouldn't grab for toys or bring them to his mouth. For some reason that was the first "delay" we dealt with and it hit me hard. The day he was able to grab at a toy and bring it to his mouth....OH MY GOD. You have no idea how that made me feel. It's as important as other children's crawling, first steps...etc.

Another milestone that I am happy to say Kaleb has gotten the hang of is going to sleep on his own. Normally we would swaddle him after his last bottle and then rock with him on the couch for him to go to bed. But started the past few days we can just put him in his crib and he will go to sleep for the night and sleep around 10 hours. I was always so lucky to have Nolan who was such a great sleeper that is was amazing when Kaleb started sleeping through the night around a few months old and now for him to just put himself to sleep is amazing. He is such a wonderful little boy, my hero, and completely protected by his older brother. He has taught me so much about myself, life, and people and is determined to "show" the doctors how great he can be.