Yes, it is!

Tuesday, May 17, 2011

Long Overdue Update on Jackie

I've been meaning to update on Jackie's progress.  As many of you know, she has several issues that we are trying to deal with.  Most of those issues are related to her CP.  Jackie continues to receive physical and speech therapies at school.  She also receives private occupational and physical therapies. 
Lately, Jackie has been more resistant to the physical and occupational therapies.  She gets an attitude and has become less cooperative during her sessions.  I hate doing this but we've had to use bribery to get her to cooperate.  And sometimes the bribery doesn't even work as evidenced a month ago when Jackie had a major meltdown during her physical therapy session and we ended up having to leave within 15 minutes because her behavior was such that she was becoming somewhat physical with the therapist.  I was very disappointed in Jackie because this is a therapist who sees Jackie as one of her own.  J has treated Jackie since Jackie was 9 months old.  I see J as somewhat of a mentor when it comes to dealing with my special needs children.  J can relate as her oldest daughter was severely disabled.  Abby passed away this past February.  I often wonder if Jackie needs a change of "scenery" when it comes to her therapists.  But I don't want to change therapists because they are so familiar with Jackie and her medical issues.  I don't want to start over.  Plus, I just don't think that is the answer for Jackie.  I think she is just tired of having to leave school early sometimes, having to miss out on fun stuff with her friends sometimes, and she is just plain tired of being messed around with.  I constantly remind Jackie that we must continue the therapies so that she will continue to grow stronger. 
A few months ago, we were planning another foot surgery until Jackie fractured her clavicle.  The doctor who treated Jackie's fractured clavicle doesn't feel that Jackie should undergo this next foot surgery.  She was suggesting more holistic treatment such as hippotherapy.  The thing is, our insurance does not cover hippotherapy and that type of therapy is very expensive.  We do not receive any type of financial help for Jackie.  No disability, no state aid, no grants, nothing.  It's all on us.  And we're not rich folk.  I was so torn about this other doctor's opinion and pretty much decided that we should forgo the surgery for now.  I'm just so unsure right now because I want my daughter's left foot to get better, to look better, to be in a more correct position.  Jackie is so much more aware of how different her feet are from other people's feet.  And even though she doesn't seem to embarrassed by it, I'm afraid that time will be here soon.  Right now, she just proudly tells people that her left foot is growing more.  Unfortunately, I think that is wishful thinking.  Her left foot is still 2 sizes smaller than her right foot.  So, we have an appointment with her foot doctor in July.  I have a lot of questions for him.  Hopefully, I can get some more answers and feel more at peace with whatever decision we make regarding Jackie's foot.
Another area of concern that we have had is Jackie's left hand.  Her index finger hyper-extends nearly all the way back. I often see Jackie playing with that finger and bending it so far back.  There is suspicion that Jackie has decreased sensation in that area.  Hyper-extending like that would hurt for the rest of us but it doesn't seem to be so painful to Jackie.  The rest of the left-hand fingers also hyper-extend but not nearly as much as the index finger.  Jackie's occupational therapist suggested that we tape the index finger next to the middle finger while we waited to see the hand surgeon.  The OT is concerned about Jackie's shoulder stability due to the hyper-extending fingers.  We even started a new therapy; kinesio-taping therapy.  Unfortunately, the tape doesn't last on Jackie because she picks at the edges of the tape until the tape comes off.  Jackie was seen by a hand surgeon last Thursday.  He agreed that we should be concerned about that index finger.  He also put me at ease right away that he would not do surgery at her age although there is a surgical procedure for her particular problem with the finger.  So, we are going this afternoon for Jackie to be fitted with a splint that will hold her index finger in a certain position to sort of "train" the finger to bend forward and not hyperextend to such a great degree.  I was relieved about holding off on surgery until Jackie is older. 
Just before visiting the hand surgeon, Jackie had to see the eye surgeon.  She has been going to the eye doctor (actually, optometrist in the same practice) every 3 months because the vision in the left eye is extremely poor.  And Jackie has strabismus (crossed eye). For awhile, there was little to no improvement because Jackie was not cooperative with wearing her eyeglasses.  I can't tell you how many pairs of eyeglasses that Jackie has destroyed or lost in her effort to get her way and not wear the glasses.  But at the last eye doctor visit, the optometrist had a stern talk with Jackie about the importance of wearing the glasses and doing patching or she would need surgery.  That talk must have gotten through to Jackie because Jackie then started to wear her glasses during the school day.  The optometrist told Jackie if she would wear them during the day, then she can take them off when she gets home.  I was so proud that Jackie was finally cooperating somewhat.  And she looked awfully cute with those glasses.  Unfortunately, even though there was improvement from the last visit, it was not enough.  Jackie is still crossing her eyes.  So, we will have to go back to the eye surgeon again in 2 months and if there is not enough improvement, Jackie will have to have eye surgery.  If Jackie does end up needing surgery, I will be fine with it.  Jackie, however, will not be fine with it.  She is a fighter when it comes to that stuff.  She remembers the extreme pain from her foot surgery.  It breaks my heart that my "normal looking" daughter has to go through so much.  But, hopefully Jackie will understand as she gets older that I'm doing what I feel is best for her to attain the best health possible.  If I don't continue to seek the best care for Jackie, then she may end up resenting me as an adult for not helping her to get better.  She may resent me now at times and as she grows into adolescence but hopefully as an adult, Jackie will appreciate the treatments that she has and will continue to endure.  I love her too much to just let it go. 

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