Mommy, I need a wheelchair

Being honest here... I don't know what to do when Paige utters this statement.

Paige has very mild CP. You would not know it by watching her on the playground. She runs and swings and can maneuver the monkey bars like a pro. When she is with her peers, the CP is a little more noticeable. Nonetheless, most people still cannot tell.

Does that mean that she does not have pain?

Paige started telling docs that her legs were hurting as soon as she could form sentences. The first neurologist patted her on the head and told her that her legs really don't hurt. He said that she could climb up on the exam table so she must be fine. She was so sad. (yes, we fired that neuro) Other neuro's admitted that her legs were very tight but she must not be in any pain because she was so active.

Yet another case of "she looks good to me."

When we moved we started seeing a new neurologist (for her epilepsy). During the very first visit, and during the first 5 minutes of the appointment, she told him that her legs hurt. He listened. He told us it was because she has CP. That was the first time she was diagnosed. Age 6. This neuro put her on pain meds, which Paige took until they didn't seem to work anymore. We let her decide and she chose to try to handle the pain and stop the meds, mainly due to the side effects and the fact that they didn't work.

She has never been able to walk long distances. She only has short bursts of energy. She has been asking for a wheelchair for about a year. Her neuro has even offered to let her out of certain activities (mainly long distance running) in physical education class. I have never agreed to any of it.

I'm afraid she will give up.

Recently we were headed to the mall. We knew we were going to be there for a few hours. Paige was very upset and begged for a wheelchair. When we go grocery shopping she sits in the big part of the cart. But there are no carts at the mall. I told her that we would take breaks. She was so sad. "But Mommy, I NEED a wheelchair!" I think she is in a growth spurt because her legs are even tighter than they have been before. She has pain daily.

Hubby and I gave in.

Hubby pushed her while I pushed her brother in the stroller.

I held back tears.

Paige was the happiest I had seen her in the longest time. Every so often she would get down and run around. When her legs got tired, she got back in the wheelchair.

All was good. Then we ran into one of the secretaries from her school. The look on her face said it all. "What the heck is she doing in a wheelchair. She looks fine to me."

At the end of our trip, she thanked us for the wheelchair and asked us if she could get one of her own. She wants purple.

I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.

I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.

At age 2...

Since so much emphasis is put on clinic follow up studies that only track preemies through age 2, I thought it would be interesting to post about my daughter at age 2. The following was written on her clinic discharge sheet.

"Premature girl born at 25.5 weeks gestation, 805 grams, 13" long. Current age is 24.1 months. There is no sign of any gross motor delay and only a slight fine motor delay. Although speech is limited, child uses sign language to communicate and therefore was able to demonstrate adequate language skills. Parents report that child is hardly sick with any colds. Parents also report child has chronic constipation. Information was given and parents were instructed to increase water and fruit."

No further therapy recommended. No further follow up is needed."

Ah, what a nice age that was. It's true, she was hardly sick. Many doctors commented on how healthy she appeared to be. She could not put 2 words together either by speaking or signing. I still wonder how they felt she had adequate language skills. The constipation comment still kills me to this day. I found it quite interesting that the constipation issue started in the NICU (where she was fed breatmilk and formula) but the clinic felt that it was our fault and instructed us to give more water and fruit!

Age 3...
diagnosed with severe sensory integration dysfunction,
still could not put 2 words together
diagnosed with severe anxiety disorder
diagnosed with PDD-Nos
self harming behavior
could barely bend legs because of CP
had bilateral hernia repair
started on MiraLAX for constipation

Age 4...
1 week before turning 4 she had her first seizure
could now speak on an 8 year old level
lost ability to walk long distances because of fatigue
sensory issues worsened
began meds for anxiety disorder but it only caused rages-she tried to pull out her eyeball
had many procedures to asses reflux
diagnosed with failure to thrive due to weight
diagnosed with GERD
chronic sinus infections

Age 5...
could not function in kindergarten due to fine motor delay
sensory issues worsened

Age 6...
finally got a diagnosis of CP
had tonsils and adenoids removed to open airway
outsiders began noticing her social differences

Age 7...
had so many GI procedures that I lost count
multiple MRI's to determine other possible causes of leg pain
tried to kill herself
self harming behavior
yellow adult teeth

Age 8...
diagnosed with OCD
started on meds again for anxiety disorder
socially is an outcast
will be getting palatal expander

I'm sure I have forgotten some.

Age 2 was looking pretty good!

I would love to hear from other preemie parents as to what issues were present at age 2 and which ones did not show up until later.