A Goal for Grayson

I accomplished a major Mommy milestone (for me, anyway) yesterday: taking both kids to a doctors appointment by myself! I had a ton of anxiety about it beforehand, especially about getting both babies in and out of the double stroller in a parking garage I had never been to before and because Grayson is hard enough to take out by himself. But the whole thing happened with relatively few hiccups, except for the fact I had to breastfeed my screaming infant while the doctor held my screaming 2 year old- oy. (This was after trying to unsuccessfully um, pacify her with the pacifier while holding said screaming 2 year old, and the doctor said, “Feed that baby, it’s distracting to all of us.”(Gah, embarrassing).

Anyway, I loved, LOVED this new doctor. She’s a rehab doctor and the main reason we saw her is to try and get some help for Grayson’s stiffness. As I’ve said, his disease is progressing and he has gotten extremely stiff, making simple things like holding him, dressing him, and changing his diaper very difficult. Minutes after coming into the exam room, she bluntly told me that it’s obvious he is a very uncomfortable kid and probably in pain. She said we need to do something. NOW. Her urgency made me feel awful and comforted at the same time. I feel terrible this is my child’s “normal” right now- restless, irritable and in pain. But comforted because a doctor truly gets it and wants to help him, and help him quickly.

She showed me a technique I can use to calm Grayson down when he’s really irritated- and she did it on him and it worked! Basically you cup your hand and pound his chest- hard. It looks like I’m beating him, but it apparently feels good and calms him.

She prescribed Valium for him to take, which should relax his stiff muscles. We started tonight with a very low dose which we will slowly increase over the next 6 weeks. Grayson actually fell sound asleep while we were changing him into his jammies this evening- I have to think it was the medicine. He is supposed to have a PT evaluation with his new therapist in the morning, after his second dose. Hmmm…may be interesting!

She emphasized over and over that in her opinion we should have 1 goal for Grayson: keep him comfortable. Every therapy, piece of equipment, and activity we do with him should be focused on his comfort. Since his disease is progressive, we shouldn’t necessarily be looking for developmental progress. She said if we get him more comfortable and help his muscles relax, there is a chance he could learn to sit up, but we shouldn’t focus on that. She said not to let anyone tell me he needs AFOs (which he has, but we don’t use anyway) and shoes aren’t necessary for him if he doesn’t like them.

I’m sure to some, this may sound like we are giving up on Grayson by letting go of expectations that he will learn to do certain things. But we don’t know how long he has on earth, and I don’t want to spend the time we do have with him, which may be short, pushing him to do those things. I want his life to be comfortable, happy, and full of love. And if that means having a shoeless boy who swings all day while listening to Veggie Tales, while letting medication work to relax his body, so be it. Please pray for our precious boy that this medication will help him and improve his quality of life. He absolutely deserves that.

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9 thoughts on “A Goal for Grayson

  1. Sounds like a wonderful goal to me! I'm glad the doctor was supportive and helpful and I hope these new measures help G feel so much better!

  2. I am so thrilled you loved the dr and she is helpful and proactive. The goal sounds good and hopefully with the new meds and techniques he will be calmer and more relaxed. Hoping good sleep is the first to appear!!! Congratulations on taking both to the dr on your own, no small task…whoo hoo!!!!

  3. What are AFOs? I am so glad, REALLY glad, that you and this doctor are on the same page. This goal is pragmatic and compassionate. You are an amazing mom. 🙂

  4. I am so happy that you love the new doc and I think that her goals (and yours) sound absolutely perfect. G is going to do amazing things, and while he may not hit milestones in the same way as some other children, he is far surpassing the reach that most children have– he is teaching us all so much!!! xoxo.

  5. God Bless you and your family. I am loving a Dr. That cares about Grayson so much. You have been on a long journey. I am all caught up now an have\will be Praying for Grayson. Xoxo

  6. The new doc sounds wonderful! Sounds like she's really focused on what's best for Grayson, and I hope the new meds continue to help with the stiffness! Congrats on getting both kids out of the house by yourself – that's no small feat :).

  7. I have been following your blog for a while and never commented. I just want to say: You are doing an amazing job. Best wishes to you and your two little guys.

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