Avleigh's Journey

Things had been going fairly well for our Avleigh since she had her g-tube placed. She gained two pounds, has more energy and able to sit for a few minutes unassisted. All these things made us feel like we were going strong and reassured us that we had indeed made the right decision in giving a way for us to provide her proper nutrition. Although these wonderful things are still going on, we have recently had some news that makes us feel as though she’s being set back a bit.

On Thursday she had a swallow study performed to make sure that we are giving her foods and drinks by mouth that are safe for her to handle. This wasn’t unusual as she had on done in the past about a year ago and passed without any restrictions. Through the last few months I did begin to have concerns as she was starting to have a hard time handling some of her foods. She would cough a lot not just with food and drink but also just with excess drool. I was looking for reassurance that she was still safe and just the feeling of certainty that she is okay with eating her small pieces of solid foods. During the study, by my surprise, she actually did really good on the liquids. The issue came in when we fed her solids. She would chew the food but when it came to swallowing the food would stay at the top section of her throat causing an incomplete swallow. She would drop her head forward in efforts to swallow the food. This is not something we were expecting. If anything we were thinking she was having trouble chewing, not swallowing. So the recommendation here is she can no longer have any solid foods. Anything by mouth must be puree’. For those of you that know Avleigh, know that food was the way to her heart. This kid could eat! It’s now a week since the test and she’s still not very sure about this “mush” that she’s being fed. We are continuing to try different recipes, different food mixtures and adding supplements when she refuses to eat. This here is a big adjustment for her and a bit stressful on us trying to find things that she likes and is safe for her to eat.

In addition to this, she also has a medication that is in the form of a pill. For the past two years she swallowed those pills like a champ! I would cut them in half and put them in applesauce, yogurt or she would even take it with a bottle. With her swallow study she can no longer swallow the pills. This medication is very important and cannot have any dose flexibility. So to resolve this issue, her doctor prescribed the medicine as a compound form. This will put it to liquid and it will be administered by tube. To no surprise, insurance will not cover! After four days of speaking back and forth with the pharmacy, insurance and her doctor we will have to accept the denial, then file an appeal for it to go to the pharmacy board at BCBS in hopes that they will then approve the coverage. In the meantime, we are yet again paying out of pocket for the entire cost of this compounded form of her medicine.

On Monday, we had a routine follow-up with her physiatrist to discuss her next botox treatment. This isn’t uncommon. We would get her new weight, she how well she did on the treatment and he would measure her tone and spasticity to look for improvements. Before we would leave we would usually have her next botox appointment scheduled within a week or two. This time was a bit different. Instead of improvements there was regression. The concern came in when her exam showed a significant difference in her tone compared to where she was before. Even with the increased botox treatment and increased dose of Baclofen (muscle relaxants) she was extremely tight. I have been noticing that she was tight and unable to do some things she could do before. But with the other improvements she’s been showing I honestly didn’t notice all the areas in which her tone changed. She’s been tight her entire life and her tone is constantly changing so much. Watching that exam and seeing how they were physically unable to stretch some her limbs made my heart sink. No wonder my sweet girl could no longer stand well and it was so difficult for her to take steps.

We then began discussing our new approach for treatment. Her doctor pointed out that we knew this progression was coming with her disorder. However, hearing those words “progression” was heart breaking. So where do we go from here? First of all we again increase her Baclofen, he prescribes new AFO’s (the braces on her feet), prescribes knee immobilizers for her to sleep in every night, look at changing her from her gait trainer to a standing frame and then the big decision of what we will do with the botox. He gave a few options and asked that I speak with her other physicians and therapists before coming to a decision on how we will treat. So four days later and I’ve finally come to peace with our treatment plan. On May 19 she will undergo phenol injections in the hip adductors and botox in her hamstrings and arms. Since the botox is limited by her weight and the fact that she’s so petite, we are unable to treat all the needed areas with just botox. Adding the phenol (injections to the nerve to treat spasticity) will not only allow us to treat all three of her biggest areas of concern, but should also last 12-15 months. This is much longer than we have been seeing with the botox. This course is the best option for her muscles but of course it comes with risks. The phenol portion of the procedure can’t be done in clinic like the botox; it requires anesthetics. She has already been under anesthesia twice this year and is expected another around June for her eye surgery and MRI. She does very well with anesthesia, but how much is too much? So you can imagine my nerves at that point. So I did what I know what to do, I researched! I spoke to several of her specialists including her anesthesiologist and we all feel the low sedative required for this quick procedure will be safe for her to undergo. I pray that I’ve once again made the right decision for my baby girl to have the best quality of life possible!