What a roller coaster (and a ?)
I haven't been here much because things have been REALLY up and down.
Our original diagnosis was of a prenatal stroke. We got this back in December. We went for a second opinion at C.H.O.P. a couple of weeks ago. The neuro there read the report (the CD of the MRI I had sent didn't make it into the chart - I sent another copy down and she'll write up a clinical report of what she sees) of the MRI. She said it wasn't a stroke per se but hypoxic ischemia in the watershed area of the brain. Treatment stays the same but there is no actual arterial evidence of a stroke. Still the same white matter loss and global brain damage. She actually wrote in the note to our pediatrician that she was shocked at how well DD is doing based on the earlier reports from her other neuro and the MRI reports. Kind of upsetting to read that her brain is that busted. Though encouraging that EI is working.
We had our first collaborative meeting with 3 of our 4 therapists and it was recommended that we look into getting our daughter a standing device. The thing looks medieval. And it's upsetting that we seem to be heading down that path, though I hold on to the hope that with the use of an assistive device now, she won't need one later.
Does anyone have experience with standers or anything like that and can share their experience with it?
TIA
Re: What a roller coaster (and a ?)
I've been there. When DS was sent to the NICU the neuro that saw him was the leader of the brain injury team. They told us about how his brain had been deprived of oxygen, he was going to be delayed and they had to sedate him for an MRI.
2 days later, the MRI is perfectly normal (albeit a small IVH from birth that will reabsorb).
1) the brain is a crazy organ. Some kids have terrible looking damage and function extremely well. While others (like my DS) have completely normal MRI's and are severely delayed. An MRI of an infant brain doesn't tell much in terms of functionality.
2) We're just starting to use a prone mobile stander with DS at therapy. It's an older version of the Rifton Dynamic Stander. https://www.rifton.com/products/mobility/dynamicstanders/
We're using it because DS is extremely hypertonic and his calf muscles are extremely tight. This helps stretch his heel cords and calves while allowing him 100% weight bearing. We also have our own Rifton pacer gait trainer. Unfortunately, we have to use a pelvic support with this and DS just sits in it and walks on his toes. It's almost impossible to get the stretch we need in it or to get his feet flat on the ground while getting him to walk.
I totally get the sinking feeling when you realize you have to have "equipment" in your house. For me it was like, when anyone came over, this giant sign that this is a "handicapped person's house." That was pretty brutal when our baby was still a baby and the news that his development would be different was still an open wound.
All that being said, I am so glad we had it and used it because it got DS ready for the next developmental steps. Now he is in a gait trainer and looking toward a walker in the next six months or so. He is cruising furniture and walking a few steps only holding our hands.
It hurts to hear this stuff, but now in retrospect I am so thankful people were brave enough to tell us: "You need to do this." We have a close family friend with CP, who has very little use of his legs, and I always wonder: What if he had had PT from age 3 months? What if he had had AFOs and a stander at such an early age? I never verbalize this, but now I am so thankful that DS was born in a time where there is so much more available. (Hope this does not sound preachy. I just lately have really come to appreciate these things.)
Finally, keep faith. Your DD is doing great! The brain is so plastic during the first few years of life. Don't let the words on the paper discourage you.
https://www.1800wheelchair.com/asp/view-product.asp?product_id=3274
That's what we'd be looking at for right now as she's not bearing any weight at all without SIGNIFICANT support.
Thank you so much for your stories. Reading them is reassuring and it seems that a lot of families with HIE babies sort of go into lockdown and into the closet (so to speak) when they get the news. I know that's what we've done.
It's so hard to have hope when you read the reports and talk to the doctors. Even with all of the EI therapists and their encouragement, this is such a painful situation.
Again, thank you.
That is similar to what we used, except the tray was a separate giant honkin' piece of equipment. LOL He was a little over a year old when he started with it.
Low tone is so tough because it feels like they will never get stronger. It's a slow journey. But hang in there!!