Orthopedic Appointment

Look at me go!! Twice in a week! I must be not sleeping or something lol. We had an appointment with Dr Mencio, an orthopedic doctor today. Things went better than expected, but of course we left with our heads down. Poor Amelia had to get an X-ray and I couldn't be in there with her. I sat outside the door crying as she yelled mama, mama, mama. Times like these I wish she never learned mama. Hearing her cry would have been bad enough, but her calling for me is rough I tell ya.

He looked at and felt her spine before really speaking to me about it. He said based on just looks and feel, he would dx her with scoliosis. My heart broke. Then he showed me the computer monitor that had an image of her spine up. He said he had to look at the name twice to make sure they didn't put the wrong one in her chart. Her spine is perfectly straight. I may or may not have shed a tear or two. He said that right now she has a lot of trunk control issues and that is what is making her spine appear to have issues. We need to work hard, as we currently are, to make sure that doesn't change.

He then looked at her ankles. Yes, she does have a lot of tightness in them. Yes her Achilles could be altered to help. The form of cerebral palsy Amelia has is spasticity. She's extremely tight. I watch how easy it is for babies and toddlers to move around and bend their bodies. Amelia can't do that. The movements she makes takes a lot of effort for her. There are a few treatment options to try with her. There is surgery on the Achilles. This is something he wants to avoid right now. Doing that will help a little, but she will still have the tightness and it won't be that helpful. We could cast her feet. They would be flexed and casted for however long he saw fit. He doesn't want to do that right now. He thinks it would help stretch her and give her what she needs, but there is a very high chance that while casting her she would pop her heel up (the issue we are having with her splints and orthos) and that would cause more harm than good because she would have sores on her heels that would need to heal before anything else could be done. Another option is Intrathecal Baclofen Therapy. What the heck is IBT? It is where they place a pump in her spine and that pump would infuse baclofen directly into the spinal cord. This would help her body loosen up. This is a scary option for us. That would mean another surgery, another foreign object in her body. More things to worry about. Thankfully Dr. Mencio decided that he doesn't even want to look into this route. With Amelia having a shunt and having hydrocephalus and having chairi malformation he doesn't know if she would qualify for the IBT pump. If it comes down to her needing one we would work with Dr. Naftel on this along with a spasticity specialist.

Well there are all these options but none of them he signed off on. So now what? He wants her to try oral medication that is specific for spasticity. He wants to continue trying night splints and AFO's along with stretching and medication before he pursues anything from his stand point. We have an appointment with Amelia's developmental pediatrician on the 18th. If she feels comfortable going with Dr. Mencio's suggestions she will prescribe the medication and we will begin. If she doesn't want to go that route than we will have to see a spasticity specialist who will prescribe the medication and monitor Amelia.

Amelia has made some great progress with her muscle tone. She is getting on her knees from any position. She actually prefers her knees over anything now, so we have to watch her on her sitting. We took a huge step forward with those gains (starting to pull to stand, getting on knees, crawling on quads - even if her legs are spread) but then we took an even bigger step backward with the tone in her feet, ankles, legs, tummy. So that is what we will be working on. She will be getting new AFO's soon. She will meet with the orthatist on the 12th to get measured. So hopefully those will be in Dec 3rd. She was also remeasured for a compression suit a few weeks ago. I thought that would have been in by now. Maybe he will bring it next week. I am hoping and praying so hard that this medication will help her tremendously and we will start to see some gross motor gains in the next few months.

I also spoke with the NP from her NS office today. She said that it is common for the tube to move as her skin hasn't fused to her plate yet. So we are just watching that and making sure no other issues arise.

Keep the prayers coming please. It is so hard to watch her struggle and hurting. Thanks