Avleigh's Journey

Life is full of decisions. Our decisions for Avleigh used to be simple. We would do whatever was best for her based on our own opinion, guidance from her specialists and our support team. But what happens when we get to the point where not everyone agrees on the same plan. How do we know that we are making the right decisions when we don’t know anything about her life expectancy. Decisions that may make her uncomfortable in the short term could give her a better quality of life in the long run. But what if that run is cut short. 

The last two appointments we’ve had for her really has us in a position that will take a lot longer to make a decision. Last week we met with her Physiatrist and this week with her Orthopedic. These two specialists have been seeing her since she’s 9 months old. They both have given us good guidance and agreed on treatment… until now. 

The physiatrist has been the main specialist treating her spasticity and high tone. She’s on Baclofen for overall treatment and she receives Botox in her hip adductors since that area is the tighest area. Without Baclofen she was unhappy, had lots of pain and suffered from muscle spasms. Botox has made a significant difference in providing care: baths, diaper changes and dressing. Both treatments help her to get into a sitting position and less leg scissoring. This doctor doesn’t feel that she needs anything more aggressive than what we have been doing. I’ve always had concerns about the Botox due to it only lasting 6-8 weeks when it should last 4-6 months. Botox can only be administered every 12 weeks at the soonest. The pain that she goes through to get these injections gives her relief only half of the period for the dose. So last week we came up with a plan to max her dose of both Baclofen and Botox (since she gained a little weight since last treatment). If once this is done and we’re still not satisfied then we can look into treating the hips at the nerves rather than the muscles. This option is more painful, has to be done in the operating room but should last much longer, 1-2 years. Seemed like a pretty good plan, until…

We met with her Orthopedic today. He monitors her joints, mostly in the hip area. His biggest concern from the beginning is the dislocation of her hips due to the high tone. From the beginning he said that once she’s 3 years old and hasn’t had improvement that he would suggest surgery to cut into the muscle of the hip adductors to decrease tone in turn less pressure on the joints. Our conversation today was an overview of our options now and in the future. He explained his dislike for Botox using a “fever” to get his point across. He said that when a child is sick with fever and we only give Tylenol, the fever decreases but the cold is still there. The Botox in this situation is treating that area but as soon as it wears off the issue will arise again. It’s also making it difficult to examine and determine when it’s time to take additional steps. The bottom line in his view is if we continue on the road we are on then when she’s around the age of 7, he would expect her hips to dislocate. The best case scenario would be for them to dislocate at the same time, which is very unlikely. If only one dislocates and the other remains in socket then she will be in discomfort and will loose the ability to sit. Either way, she would be looking at a bigger surgery on the hip bones to fix what we have been trying to “bandaid”. But even if we do decide to go with the surgery to release the muscle, she will still be looking at needing the surgery on the hip bones at a later age. It wouldn’t be as major of a surgery. 

So where do we go from here. My first thoughts are to take things slower and treat as it happens. Why put her through surgeries, pain and recovery if she will not get the long term benefits. But even with all the odds I don’t want to believe that she can’t make it to those older ages. We do still have a few months to make any decisions, at least 6 months, but we think the best plan for now is to continue with the physiatrists suggestion to increase Botox for this next round and to increase the Baclofen. See how she reacts to that and then see what her hips are looking like at our next appointment with Orthopedics. If the pressure on the joints has not improved then we will look further into going with the muscle surgery. 

All in all we are praying that we have the proper knowledge and are able to make a sound and confident decision on what is best for Avleigh.