After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Sunday, April 10, 2011

The diagnosis

It's official...Summer has Cerebral Palsy.

The last few months I have been discussing Summer's condition in depth with her therapists and doc at Children's. The GI doc who has been taking care of her since she was 3 months old has been telling me for a long time that she has CP. He has explained his view point on this and always refers to things she can't do as a result of her CP. There has been no official diagnosis up to this point from the Neurodevelopmental clinic, so I have not referred to her having CP. Summer's OT has told me several times that she feels Summer is developmentally delayed, but doesn't necessarily show the attributes of a typical CP kid. According to her brain scans (she has significant scarring in the center area called the corpus collosum), there is physical evidence of a brain injury, that occurred when she got NEC (necrotizing enterocolitus) at two weeks old. NEC is such a severe shock to the system, that brain injury is a quite common side affect...her GI doc has seen many cases like hers. CP, by definition: An abnormality of motor function (the ability to move and control movements) that is acquired at an early age, usually less than a year of age, and is due to a brain lesion that is non-progressive.

I have struggled with this for a long time and in fact, I have avoided going to the Neurodevelopmental clinic because I didn't like the negative feeling I received from them after a scan she had last year. Though predictions can be helpful at times, Summer has always exceeded them. I have worried less about her progress while keeping myself in the dark, so to say. I decided it was time to suck it up and go back to see them.

Summer had an appt. last Wednesday and I was pleasantly surprised. Though the result was the one I was hoping to avoid, it is not as bad as I thought it was going to be. The nurse practitioner was very thrilled with Summer's progress! Of course, not going to her for almost a year gave us lots of time to show a lot of huge changes, ha ha! She kept referring to Summer as being "smart" and telling me that if you have a "smart" kid, they can do more than expected. They might not do things the way we would, but they get them done. She has seen several kids with a bleak diagnosis, far exceed expectations. Though it is common to identify someone with CP as having cognitive issues as well, CP only refers to the motor function and not the many cases the brain injury has also affected the intellect. Fortunately, Summer has developed so well cognitively...this will be a huge advantage to her.

CP is classified in 5 stages...5 being the most severe. Summer is showing development in stage 3 and some things in stage 2. I agreed to have the nurse practitioner evaluate Summer's progress... According to the "Gross motor function classification system for cerebral palsy", here are some things we may be seeing in the future:

Between 2nd and 4th Birthdays

Level II Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.

Level III 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 self mobility. 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.

Between 4th and 6th Birthdays

Level II Children sit in a chair with both hands free to manipulate objects. Children move from the floor to standing and from chair sitting to standing but often require a stable surface to push or pull up on with their arms. Children walk without the need for any assistive mobility device indoors and for short distances on level surfaces outdoors. Children climb stairs holding onto a railing but are unable to run or jump.

Level III 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.

Between 6th and 12th Birthdays

Level II Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have at best only minimal ability to perform gross motor skills such as running and jumping.

Level III Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair manually or are transported when travelling for long distances or outdoors on uneven terrain.

Distinctions Between Levels II and III Differences are seen in the degree of achievement of functional mobility. Children in Level III need assistive mobility devices and frequently orthoses to walk, while children in Level II do not require assistive mobility devices after age 4.

So, Summer has her work cut out for her! She has shown great determination so far...I'm sure she will continue with that attitude :) For now, we keep her busy (and mom too!) with all the therapy we can...Occupational/physical, Speech, Swimming, and Hippotherapy...helping her maximize her potential :)

Say "cheese"! And she does...all it takes is a glance of a camera to get her to pose.

Tom showing Summer pictures of her...she loves cameras...she sees mine out a lot!

We went to the Star Wars exhibit at the Pacific Science Center...
A Jawa....or "baby" as Summer labeled it. Everything small and cute is a baby to her :)

Be good, you will be...

These audio recordings at each display case kept Summer entertained.

Hippotherapy with Spud. Summer goes every Friday until June. Hippotherapy is a physical program that uses the motion of the horse to help kids that can't walk or need extra muscle development in their upper bodies...Summer has both issues.
She loves to ride, but gets very tired from the heavy stretch...they are hoping it will help strengthen her trunk and leg muscles. Fridays are good nap days!

In the arcade at Great Wolf Lodge

Summer thinks her toes are that she can reach them...

Kissing it better!

Bathing beauty

Morgan was sad after getting hurt so Summer gave her hugs...and nose honks ;)

PS~ If you are still reading Summer's blog, leave me a comment :) It's nice to hear from you!