It is hard to believe that Faith’s first year of school is almost over! It seems like I just posted her first day of school pictures and now it is May and Faith’s regular school year ends this week! Faith had a great transition to school and has done very well. Faith will attend a short maintenance summer school program but then she will have quite a bit of time off from school over the summer. Since this is the first summer since she has been in the school system, we are trying to figure out a plan to make sure Faith gets what she needs over the summer break. We are looking into different options for OT, PT, and speech. Faith will continue music class, horse therapy, and water therapy over the summer so we will determine what is going to be her greatest need for additional therapy. I will also be working with her at home as much as possible. Of course, just keeping up with the basic needs of both kids is a challenge in itself so we will see how well that works out!
Faith seems to be getting stronger, healthier, and more resilient as time goes on! She had a great winter in terms of staying healthy. We had a few illnesses and ER visits but nothing that required hospitalization. We are very grateful that we have been able to manage Faith’s care at home when she has been sick and that she is staying healthier more than ever before!
One of our biggest challenges right now with Faith continues to be her muscle tone and excessive limb movements. We have been trying new medications and doing lots of brainstorming on how to adjust things to help her. The clonazepam did not seem to benefit her so we just weaned her from that. We started a new medication called carbidopa/levodopa(Sinemet) and are slowly increasing the frequency of doses each week. This medication is often used in adults to treat Parkinson’s Disease and Restless Leg Syndrome. We are hoping that it will help control Faith’s excessive movement. The last several days and nights have been rough for Faith. Nights are worse than days it seems right now but overall she just does not seem comfortable. We got one good night mixed in between the rough ones when she was finally able to get some rest but then the agitation started right back up again. We are assuming that she is experiencing a common side effect of the medication which is stomach upset. It seems that she is probably having so much discomfort at night because she is hooked up for continuous tube feedings and the discomfort seems to be a lot worse when she has food in her stomach. So, we had to start ANOTHER medication to help with the side effect. We are going to give this medication some time to determine if it will benefit Faith. We are going to need to see pretty significant benefits in order to keep her on the medication and the additional medication to help with the side effect. Our goal with medications is always to give her only what is necessary and beneficial. Unfortunately, it sometimes takes quite a bit of trials.
We are really hoping that we can figure out a way to help Faith be more comfortable. It is very frustrating to see her uncomfortable and we feel so helpless at times. We have limited options for positioning which creates even more frustration for all of us. Faith can spend some time on the floor on her back or stomach but we have to be careful during tube feedings or when Faith is getting medications or water flushes due to reflux and the risk of aspiration. At the same time, she should have more options that are comfortable for her and we are trying very hard to figure that out right now. She should be able to sit in a modified chair or her kid kart without being miserable or hurting herself from all of the moving and kicking. Faith has made a lot of progress tolerating being on her stomach and seems the most comfortable at times on her stomach recently. Again, this is a limited position. Holding Faith is getting more difficult due to her excessive movement and at times it doesn’t even seem like she wants to be held.
The other downside to the muscle tone and excessive movement issue is that it is holding Faith from making progress in many areas. It is also exhausting for her and making sleep even more challenging. Even when she is sleeping lately, she just appears so restless. We are remaining hopeful that the Sinemet will eventually work with the proper dosing and that as a result Faith will get more comfortable and have better control of her body. We are always grateful for all of Faith’s smiles but right now we aren’t seeing as many as we were. Just another obstacle to overcome on our journey!
With summer approaching, we are looking forward to our trip to Chicago for the ICAN conference in July and wish for a healthy and happy summer for us all!
Here are a few pics of Faith from this spring when she was doing really good! Enjoy her smile!!
Keeping the faith,