4.14.2008

Plan of attack

I guess I'll start with the best patient and move down the line~

1. Cooper - (borderline chiari) I got an email from our NS tonight stating that it might be a good idea to have him rescanned. The MRI that we sent was from 2006 - right before his cranio surgery. A lot may have changed in almost 2 years and a total skull reconstruction surgery later. I guess we will have to hold our breath to see if he will be the minority. He will probably be seen by the NS on May 8th.

2. Keegan - (Chiari) Goes in tomorrow for a swallow study. It will tell us if he is aspirating like Riley had been or not. He has been complaining about leg pain. I am not sure what path we'll take with him yet, but he will also be seen on May 8th.

3. Carson -(Chiari) She will be having a spine survey MRI done soon to detect if she has a syrinx (Syringomyelia (IPA: /sɪˌrɪŋgoʊmaɪˈiːliə/) is a generic term referring to a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord.) or not.
Our NS mentioned to me that this could possibly be the reason why she is rocking and thrusting her back/head into things. He did mention that he has seen children who have had rocking issues, and the rocking has resolved it's self after surgery. Does this mean she'll be the next to have surgery? I don't know. She will most likely be seen on May 8th

4. Miss Riley - (Chiari, decompression surgery done on 2.13.08) Riley seems to be healing pretty well. Her incision area still seems to be a bit red, and it itches, but other than that, it's her only complaint. I do believe she is going to need the help of a counselor, or therapist because something happened after the surgery and she is no longer my outgoing, self confident little girl. She cries a lot, she afraid of a lot of things, and just plan not herself. I don't think it will take much, but a think a little help will go a long way for her. She will have her 3 month post op appointment on May 8th.

So, that's it. That's where we stand right now.

I will post the results of Keegan's swallow study tomorrow.

5 comments:

Kath said...

Am praying for you all x Hope they all feel better soon.

Best wishes!
Kath

Angela said...

Everyday it's just one day further on this journey. Some days it is just putting one foot in front of the other to just endure - Hang in there Cindy!

Michelle said...

Sounds like a good plan of attack. Keep us posted!

HUGS!
Michelle, Gabe, Lindsay, Hannah and Fayeth =)

BoufMom9 said...

Oh Cindy! I am so sorry! I haven't been around because I have had things going on and I didn't know you were going through all of this! I am so sorry i wasn't here trying to bring you up a bit. (not even sure how)
You know that old "bull", God only gives you what you can handle?
Ever get to thinking that God might be sipping the sauce too much these days? (OK, so I hope I atleast made you smile...)
Please know you are ALWAYS in my prayers! ALWAYS!
Debi

my4kids said...

I will keep all your kiddos in my prayers for this appointment coming up. Is it common to have all the kids have it?