jenoa

We just found out that my son was actually misdiagnosed. After thinking that my baby was going away for good and suffering with that knowledge for months, we were told that he actually has a different genetic defect. The symptoms are similar to SMA in the begnning but is pretty much the opposite of it when the the baby hits the toddler stage. Not only will Sam be with us for a long time, he’ll also be able eat, sit, walk and do pretty much everything on his own. The crazy thing about the disease is that kids are usually tube-fed when born due to weak muscles and then gradually grow in strength until they can eat by themselves and not only that but they usually end up obese because they never feel satiated! So change of plan…will start the Prader Willi Association in the Philippines rather than SMA.

21. My mom’s old dresses altered to fit me.
22. Going to therapy with Sam (my baby).
23. Children’s birthday parties.
24. Freebies
25. Old family pictures.

Hey everyone thank you sooo much for all the support. Its been a while since I last posted because i was so down i just couldn’t. But i want you all to know i read all your posts and messages and they helped me cope. They really did. I have good news about my baby. Miracles really do happen. It seems that he may have been misdiagnosed. We are wating for some test results and hopefully they come out positive. The new daignosis would mean that he will not be leaving us for sometime yet. We still have a long battle ahead of us but the new battle is far far better than being told that he’ll be gone in a couple of years. Thank you so much for your prayers. Hoepfully i’ll get to post more often again. And by the way I am doing better. I still have a lot of down days but its starting to look up.