Pulminologist Appt

Tuesday Noah had a Pulminologist appt. It went ok. The doctor has switched some of Noahs meds and increased some of them to see if this will help. He increased his Zantac dose because he feels that Noah might be refluxing a little which is causing him to asperate. He also increased his Nebulizer treatments to twice a day to see if this helps too. He has decreased his Robinul med (the med that helps with controling his saliva) He did this to see if Noah was drying out to much but told me if he started drooling to much than I could increase back to regular amount. Last night we had to go back to regular amount. The doctor did feel that Noah would be on the oxegyen now for the rest of his life. We kinda new that but it really sucks knowing that there really isnt any hope that he will come off now. Dr. Mellow felt that this was the beginning of a long road ahead. :( But we will hold our heads up high and we will not stop trying to prove these doctors wrong. We will cherish the days we are all together and not give up!!! He is so cute! Lately he is mimicking us... he is laughing out loud and I've even got him to try to say "LaLa" The pediatrician even witness some of this mimicking and told us this was more a 6 month developmental stage.... here Noah is proving Dr's wrong already. He starts Preschool Summer School next week. Mommy is so excited for him because I actually feel that he is ready for this. He will return going 5 days a week. Im so proud of him. We are again trying to get him off one of his siezure meds and (knock on wood) this time seems to be more successful than the two other times we have tried getting him off this med. We are down to only having to give him a half of the Klonopin once at bed time and we started out on 1/2 in the AM and a whole in the PM... he will stay on this dose for 2 weeks (1/2 in the PM) and then he is off the medicince!!! One siezure med gone (crossing fingers) he is so much more alert since this change and doing so well. LEts hope it works this time! We had a Graduation Party for Noah last weekend and it turned out to be a wonderful day. We had great weather and lots of family and friends show up to celebrate such a wonderful accomplishment.

Progress

Noah is doing better we still have tough days but there is more good days than bad again. I think alot of it is allergies now. The scariest things right now are the mucus plugs that he keeps getting... he cant breathe thru them and all u can do is try to help and wait for them to pass. We've had to call the ambulance twice now because his 02 stats drop and he turns color on us. We have a pulminology appt on June 26th and hopefully the specialist can help us with this issue. I hope so I panick everytime..siezures are one thing to handle but when your baby stops being able to breathe its horrible!!! I didnt think it could get worse than the siezures...I was so wrong!!! On a lighter note... Noah graduated Preschool June 8th. It was such a wonderful day. So nice to be able to celebrate such an accomplishment for him!! He was so cute in his cap and gown and stayed awake for the whole ceremony!!! His last day of preschool was June 12th and then he begins his summer school on July 5th!!! Then in Sept he starts KINDERGARDEN!!! Wow where does the time go?