6 month POST OP follow up

Well, it is VERY hard to believe we have come to this point. Charlie and I took Anderson to his 6 month post op follow up appt. We went to the local neurosurgeon since Anderson is doing so well and seems to be not in any pain any longer. Dr. Frim, the neurosurgeon in Chicago, thought it would be fine to stay local for this visit. It is so surreal to walk into Children's Hospital and ask for a badge for the neurosurgery. Hard to describe in words.......but, hopefully, after our trip yesterday....we will not have to experience it again!

The appt went great! Anderson's wound has healed "perfectly". You can hardly tell where the incision is on his head.....due to his curly (not sure where he got that!) hair......it really hides the incision. But, most importantly, it is fully healed and looks great (no fluid, no bumps, etc). We only have to follow up on a "as needed basis"!!!! We are so thankful!!

I left the appt in tears....THANKFUL that we choose Dr. Frim as our neurosurgeon. The local one we saw yesterday for the appt just sees Chiari "differently" than the way Charlie and I, and Dr. Frim see it. I think it is from lack of experience with the patients to know. Again, Dr. Frim does the decompression surgery that Anderson had 10-12 times a MONTH, where our local one does 10-12 per Year. BIG difference! It was great to leave yesterday KNOWING we choose the right surgeon for Anderson and knowing that we did the best we could for Anderson.

We still have a long road ahead of us. Anderson still is delayed in all areas....gross motor, fine motor and speech. Gross and fine motor are developing VERY well as he is walking and getting stronger. The speech is slower, but his therapists remind us that basically on March 3, 2008....Anderson was "reborn" and we need to give him 12-18 months to develop the muscles in his mouth that are necessary to talk. Anderson continues to make new "sounds" and he will point with "intent to speak"...it is just in "Anderson language". ;) Anderson is still at Children's Hospital 6 hours a week for speech, OT and PT. The therapists have been incredible, patient and amazing. We adore all of them!

The improvements in Anderson over the past 6 months are remarkable! Here is a list of JUST SOME Of the things that are better:

1) His eating skills went from a 6 month old to age appropriate 2 months post op (ie he no longer gags/chokes on his food when he eats!)

2) He walked 3 weeks post op (until he broke his leg....but he started right back again after the cast came off)

3) He now will lift his arms above his shoulders and up in the air

4) He has the strength in his hands to push buttons on toys, books, a light switch, etc

5) He is starting to feed himself with a spoon.

6) He had 2 constant sounds prior to surgery, now he has so many.....at least 12!!!!

7) He is using a bit of sign language now to communicate.

8) Pre op Anderson was "very fisted"...he never relaxed his hands...now he is pointing and playing with his pointer finger, putting his palms "down" on things, etc.


MOST IMPORTANTLY....he no longer bangs his head with his hands or fist in pain!!! YAHOO!

In terms of the other things where he needs to catch up....."ONE DAY AT A TIME...." this has become my motto! Time, patience, time, patience and prayer!!!

Thank you Dr. Frim!!!