25 random things about Vinny

All of our CdLS friends were posting "25 random things" about their child with CdLS on Facebook. I thought I would post mine here for those of you who are not on Facebook.

1. When I was 10 weeks pregnant, I felt that something was not right with my pregnancy. I told only a few close friends this. Then as my pregnancy progressed and I went to a specialist, and many ultrasounds later, my perinatologist said that something could be up with my pregnancy, but we would have to "wait and see" until he was born. Everyone kept telling me that Vinny would be fine and everything was in my head. But I really FELT that something was different.

2. I will never forget the day of Vinny's birth. It was probably one of the scariest saddest but happiest times of my life. If I only new then what I know now.

3. Vinny was born full term at 6# 6oz. He came home with me 2 days later. Our geneticist told us she has never seen a CdLS baby that did not have to go to the NICU.

4. Vinny drank out of a bottle for the first 5 weeks of his life. I felt something was wrong with his projectile pucking and coughing...a swallow study showed aspiration, so he got his NG tube.

5. 8 months later he got a G tube and yesterday finally got his Mic-Key!

6. Vnny has reflux like most of our CdLS friends. He is on Previcid to help control this. He will "projectile puke" every so often.

7. Vinny is a healthy little guy and has only had surgery for his G tube.

8. He has no limb differences. No cleft palate. He is all around healthy!

9. Most of his nutrition is given through his Mic-Key. He is doing really well at this time with taking food by mouth. His favorite food is Gerber puffs!

10. Vinny gets OT/PT/SLP and Hearing specialist twice a month. Sometimes I wonder if he should be getting more. Some of our CdLS friends get so much therapy!

11. Vinny weights around 14# 3oz and is wearing clothing sizes 3-6 months and some 6-12 months.

12. He has two bottom teeth.

13. He loves to chew on his fingers and anything that he can get his tiny hands on.

14. Speaking of tiny hands, these are probably his favorite---he loves to look at them and put them in his mouth.

15. Other favorites are those soft bath tub letters and metal measuring spoons.

16. Physically Vinny is coming along at HIS pace! He rolls side to side and can roll from his tummy to back. He will sit up to 30 + seconds, but if distracted by something he topples over...

17. Vinny is nearsighted and wears glasses (he got them at 4 months). He also has hearing aids secondary to mild to moderate hearing loss. His last sedated ABR (hearing test) showed great improvement with hearing. His ears and ear canals are to tiny to get tubes...we are waiting for him to get bigger so we can get them!

18. Vinny enjoys being snuggled and carried around. This is different from when he was born. For probably the first 6 months of his life, he preferred to be in his bouncy seat and would not tolerate being cuddled. I am so excited that he now tolerates being carried around in my sling.

19. He hates having his head touched or rubbed! It makes him ticked off and he will get stiff and arch backwards. However, he will let his grandpa rub his forehead for some reason.

20. Vinny loves anything soft or that has tags on it. He has many small soft blankets (woobies) that I have made him. He has one with him all the time. They calm him down! He loves to rub them up and down.

21. Vinny also loves his pacifier. he has finally figured out how to take it in and out of his mouth. I can just hand it to him now and he will pop it right in.
22. Vinny is a great sleeper.

23. He is such a mellow man and so happy. He only crys if something is wrong or he needs something. His laugh is infectious!

24. I thank God every day for Vinny. I feel so lucky that he chose me to be his mom! This little boy has taught me so so much in his short time with us! I look forward to the many wonderful years ahead and all of the great life lessons that will come with time. I love you Vinny!

25. I am also so thankful for all of the wonderful people I have met on this journey! Without all of you I don't know how I would have made it this far! You and your precious children are amazing!!!