Saturday, October 3, 2009

You've got mail...

Yesterday I got a letter in the mail regarding Ashlea's botox procedure. It contained these magical words...
"Ashlea has spastic diplegic cerebral palsy (GMFCS 3)"
Did you see that??? GMFCS LEVEL 3!!!

At one point I (and most others) would have never thought this possible. When Ashlea was first classified as a 1 year old she was a Level 5.

For those who know nothing about the GMFCS levels here are the criteria for being a Level 3 in the 2 - 4 age group:

  • Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting.
  • Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of selfmobility.
  • Children may pull to stand on a stable surface and cruise short distances.
  • Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.
Ashlea can w-sit, crawl on hands and knees and walk (very) short distances using an assistive mobility device. She is unable to pull to stand or cruise.

Unfortunately when Ashlea turns 4, the criteria for the next age group get tougher and I think she will drop back down to being a Level 4. After my initial reluctance to get her classified we are going to do the assessment this Friday. If Ashlea is well in the middle of the range for a Level 3 then that may show she will keep improving and be able to maintain that level. If however she is on the lower end of the spectrum for a Level 3 that may show that in time she will actually be closer to a Level 4. Does that make sense? These things are a little fluid until the age of 6. By the age of 6 a child's GMFCS level is usually unlikely to change.

Here are the criteria for next age bracket (4 - 6 years):

Level 3

  • Children sit on a regular chair but may require pelvic or trunk support to maximize hand function.
  • Children move in and out of chair sitting using a stable surface to push on or pull up with their arms.
  • Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult.
  • Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

Level 4

  • Children sit on a chair but need adaptive seating for trunk control and to maximize hand function.
  • Children move in and out of chair sitting with assistance from an adult or a stable surface to push or pull up on with their arms.
  • Children may at best walk short distances with a walker and adult supervision but have difficulty turning and maintaining balance on uneven surfaces.
  • Children are transported in the community.
  • Children may achieve self-mobility using a power wheelchair.

Based on these criteria Ashlea would definitely be a Level 4 after she turns 4...but I don't believe she has finished making progress just yet! I am very hopeful that she might end up able to maintain her Level 3 status.

And for those wondering why I changed my mind about doing the assessment?

A couple of reasons:
  • one being that my curiousity got the better of me!
  • another is that it makes it easy to explain to medical people her level of function
  • and lastly the level you are has a strong correlation to the likelihood of developing hip problems in the future. If it is likely Ashlea will be a Level 4 we may pursue purchasing a standing frame as the more standing she does the less her chance of hip problems

And for those not interested in GMFCS levels at all who are still reading...here is a pic of my 'big girls' smothering my 'little girl' with love...

2 comments:

Big brother, Little sister. said...

Congratulations on seeing the level 3! I know exactly how that feels and it is fabulous to change from a 5! :) Bron xoxoxo love the pic of the 3 girls cuddling too :)

Sarah said...

Yeah that is great!

Love the pic!