When NOT needing heart surgery is bittersweet

The title surely sounds ridiculous to anyone reading this. Who would ever actually hope for the news that another open heart surgery is needed for their child? When Gracie saw her cardiologist on Wednesday, I did… sort of.    Granted, I don’t really want her to have surgery, but had the answer been that she needed it imminently due to further deteriorated heart function, it would have explained so much about certain things going on with her. Instead, it only further solidified the fact that her deteriorating gross-motor stamina (especially her lack of desire to walk any great distance) has very little cardiac component and is, sadly, more to do with a laundry list of other issues. As for her heart, she would have, if “otherwise typically active,” had a mitral valve replacement several years ago. She was born with an incomplete AV canal and has undergone a total of three open heart surgeries to date. She will need a fourth to replace her mitral valve - - the question is when. Her cardiologist will be presenting her records to the esteemed and well-loved, Dr. Hanley, who will weigh in on the matter.

Back to why I (sort of) hoped that her heart held more answers to the current issues… Gracie’s desire and ability to walk longer distances (longer for her… not actually very long) has decreased tremendously over the last several months. I posted about this a year ago:

"Why doesn't she walk, yet?" is commonly asked, even amongst those "in the know" in the world of CHARGE. I have fielded a bevy of questions on this subject, especially of late. Doctors asking, parents of other kids with various special needs, parents of kids with CHARGE... "Isn't she in therapy?" I can go into the details of her therapy regimen - - it is intensive, both in session and at home - - but the point of all this is that these inquiries (which are sometimes judgments) only remind me that all of her hard work (and ours) has yet to yield the desired result. There are numerous explanations for her delay in this area... she has no semi-circular canals, her vestibular nerve has not been visualized in a CT and is believed to be malformed or missing entirely. She has scoliosis that has affected her hip alignment and her leg lengths. She has mild diplegic cerebral palsy. Her hospitalizations and chronic illnesses have created roadblocks to maintaining strength and stamina. And, still, after all these years, I will not give up... but I also won't pretend that at moments I feel sad, frustrated, deflated and defeated.

Since we moved and I have been establishing her with an entire new team (a total of nine specialists, plus a pediatrician, a dentist, a physical therapist and an occupational therapist), I have repeated the laundry list of reasons that Gracie does not yet walk independently. I know the reasons… and I hear myself when listing them. But, on October 22, 2012, when we had to meet with a doctor at the CCS-MTU (California Children’s Services Medical Therapy Unit) to obtain a prescription to have her wheelchair adjusted, I heard those reasons in a whole different way.

The doctor, a Physiatrist (not included in that list of nine specialists), said to me, “Is she wanting to walk or are you wanting her to walk?” He went on to (very bluntly) say that, by his assessment, it is no surprise that she has had a decline in her ability and desire to walk. His report (wherein he couldn’t be bothered to spell her name correctly) lists those reasons with equal brusqueness… “significant kyphosocoliosis, restricted hip abduction, ankles only extend above neutral by 2 or 3 degrees, feet are windswept to the right, when walking, she does not bring her knee to a neutral position, knee flexion contractures, hamstring contractures…” the list goes on as does his alluding to the fact that the numerous specialists we had seen in the eight plus years prior to him should have followed a different course of treatment for her regarding bracing, etc. (renowned doctors, mind you, with second and third opinions from other renowned doctors).

Nothing like making me feel like 1) we did not seek the right treatment for her (I know that’s not true, but his bite definitely left teeth marks that day)
2) we are forcing something (possibly cruelly forcing) that she is never going to do because of that list in his report and the one I already compiled
3) crying… hard.

I don’t cry in appointments. But that day, I could barely stop the tears from flowing. I sucked it up pretty well considering his lack of bedside manner and the burning hot tears that stung my eyes and tingled my nose. I left with a giant lump in my throat, a broken heart and the sinking, helpless feeling that I had failed my daughter both through treatment that differed from his opinion and by pushing her so hard to accomplish independent walking - - or even walking with a walker independently.

Since that day, we have continued the daily stretching exercises and even tried a different kind of stander, The Magician, for Gracie. The stander, they hoped, would help with stretching. She hated it. We would set the timer for 30 minutes (they wanted 60 twice a day) and she would sob for 30 minutes. It didn’t help that the one we borrowed was too big for her, so she could easily shift herself out of the desired position. Her therapists have made school visits to establish some plans for keeping her active with her walker and transitioning. And, Kaitlyn, her aide, does a phenomenal job of getting Gracie moving (and respecting her limits). With all of this, there still hasn’t been much change.

So, when we headed out to the cardiologist on Wednesday, I was kind of hoping that there would be an obvious cardiac component to her lack of energy. That would be an explanation… one with a surgical solution… and, once past recovery, it would cure the lack of energy and thus, give her back the ability to rebuild strength and stamina. But, Dr. Saba felt strongly that the decrease in Gracie’s activity level is not from any changes in her heart function - - heart function which is limited, of course, but is relatively unchanged in the last couple of years. Thus… bittersweet.

While Gracie’s activity level has decreased, there are many pieces of good (really good… and great) news. She continues to enjoy school - - not so much the work part, but definitely all the fun stuff! Her aide, Kaitlyn, is amazing with her. Gracie… DRUMROLL, please… goes potty on the toilet every single day… often more than once! This is a HUGE milestone for her. She rides (like a speed demon on some days!) an adaptive bicycle on the playground at school and loves it! (This is not a surprise to us, but considering what her team at her old school claimed she would/would not do at school, this is a great step in the right direction!) She is getting her own iPad for school (finally!) and everything will be able to transition to home use on our iPad thru the cloud. And more!! Her feedings - - always the biggest health challenge in her nearly ten years - - are going better than ever (with the exception of her abdominal migraines) and her weight is the highest and most stable it has been in her entire life. 

Instead of dwelling on all those laundry lists of reasons why Gracie isn't yet walking, I am taking that list of good things and placing my focus there. I will continue to believe and hope that Gracie will regain her strength and stamina. I will continue to push her on the days I know she can handle it and respect her limits on the days she makes it clear that she can’t.   And, while I certainly understand the physical and medical conditions that challenge Gracie (and could, quite possibly, permanently limit her), I will not EVER allow the opinion of any doctor destroy our hopes and dreams regarding her potential.