Then we saw the retina specialist in November and he completely crashed that idea when he discovered the fluid pocket on Madilyn's right eye (the only eye she has any vision) and we went from seeing him every six months right back to every two. I was crushed............
We also found out around that time that a hospital only two hours away vs the 7 we travel is capable of doing Madilyn's G/J feeding tube changes every 3 months and I got sooooo excited............and then they refused to see her because her medical history/diagnosis is so complex.........they're afraid of her. So once again I was crushed..............
So I had my pity party (which lasted about 8 minutes) and reassessed the situation and made my wishes more compatible with my reality. We traded the most beautiful, luxurious, spacious gas guzzling Tahoe for a comfy, fun to drive and fuel efficient car.......we ordered a portable DVD player to entertain the Peanugga on these trips so she can watch her favorite cartoons and listen to her music videos in the car and during the long days at the hospital during appointments..........and I altered my wishes.
Now I wish for good appointments instead of less. I wish for the chance to go to the zoo and the aquarium while on these trips and to have at least one meal that doesn't come from a drive-thru, hospital cafeteria or mall food court on at least half of the upcoming trips. I've come to terms with the fact that no matter how "healthy" we get Madilyn and regardless of how much she is thriving all the risk factors are still there. I've accepted that no matter what they will still want to physically see her in order to monitor her and in most departments they have no other option. Neonatal Development has to see her twice per year to track her progress to assign or redirect therapies for her, Endochrine has to track her growth, GI has to monitor her growth and her feeding tube, Neurology has to monitor her shunt and her Dandy-Walker, the retina specialist has to continually see her in hopes of maintaining her vision, the ophthalmologist has to see her to moni.tor her glasses/vision needs and Genetics has to see her because she is one of a kind in the world so they have to monitor her because she wasn't even supposed to live with her chromosome lines much less thrive. So we wish for good trips and happy specialists and for no life threatening illnesses this year.
In the past few months we've had never ending ear infections (at least it felt that way with 3 in a row)...c-diff and 2-year molars and through it all Madilyn has made huge progress...she went from being completely uncooperative at physical therapy to showing off. She's taking steps and running everywhere in her walker which is awesome because we get her gait trainer (a walking aid) in two weeks and are very excited. She's suddenly back to putting food and everything else in her mouth so it makes me hopeful that she will start to consume something orally instead of just through her feeding tube. We are also nowhere near as dependent on the suction bag because her stomach is finally healing and that is amazing!!
I guess sometimes I forget how complex Madilyn is medically because we live it every single day. We don't take anything at all for granted but at the same time it is our "normal". My "job" is different therapy appointments 5 days a week, feeding tubes, shunt function and having fun with the sweetest little girl ever who has the most amazing belly laughs I have ever heard. If you had to wait over 1 1/2 years to hear those laughs finally come out you would totally understand why they bring tears to my eyes every single time.......to me, it is the most beautiful sound ever.....
So we still wish and dream because without wishes and dreams life doesn't have meaning.........we just make sure those wishes aren't quite so unattainable..........and we will shop for new little pink tennis shoes because in reality it's all about the little pink shoes...........
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