A few things to post today. We seen our Neurologist yesterday. The Neurologist finally came right out and said that Carver has Spastic Hemiplegia Cerebral Palsy. It is debatable whether it could be classified as Spastic Quadriplegia Cerebral Palsy. The spasticity refers to the inability of a muscle to relax. Carver has a hard time relaxing his right arm/hand. He also has high tone in both legs with his right leg being a little tighter then the left. Hemiplegia is cerebral palsy that involves one arm and one leg on the same side of the body. Quadriplegia refers to a pattern involving all four extremities as well as the trunk and neck muscles. Carver struggles to lift his head and he is unable to sit. At this time, I believe she is classifying it as Hemiplegia. However, time will tell if it is more severe. She had us start Baclofen. This is supposed to help relax the muscles. I was really wanting to avoid using drugs, but she feels like the muscles are starting to get a little tighter. She believes the medicine will allow him more movement that will help increase mobility in the legs and arms. Getting good weight bearing on his legs and arms will strengthen them and allow better mobility. She says that as long as the dose is right, we shouldn't notice a difference other then in tone. I don't feel like I've seen a change in tone. I've only noticed that he is less likely to try to hold his weight up as he gets heavier. We're hoping the new medicine helps us move along developmentally.
Kinnick and Carver were weighed today. Kinnick has lost weight. She now weights 16lbs 12 oz. Carver is still not gaining, either. He weights 19 lbs. I'm not sure why we aren't gaining. They're both eating really good. We will see the dietitian next week. Kinnick is still 28 inch long and her Head is 43 1/2 cm (up 1/2 cm). Carver is still 28 1/2 inch long and his Head is also 43 1/2 cm (up 1/2 cm). So, not a lot of growth, but we still feel like we've made progress with our eating. Kinnick has even started sampling cheese puffs. If we could just get her to sample a Big Mac, we would have it made - HA!
Kinnick is just about over her cold. She's back to 1/8 lt oxygen. Carver is on 1/16 lt oxygen during the day and night. Winter is coming, so we're starting to avoid visitors (not that we allowed many anyway). They will get the synagis (RSV shots) again this winter. These will start next month.
We're still working on our list of equipment needs to request with the special funding MRDD has to offer. Thank you all for your suggestions. We're looking at all of them.
4 comments:
Hey Shanon,
I gave this med a bunch to babies/kids/teenagers when I was working at it seems to really work for some kids. I hope that it helps Carver and you see improvement in leaps and bounds.
Conner is SICK...you definately don't want him around your kids. He lost 4 oz in the last 4 days...and you know better than anyone how precious those 4 oz are.
We're thinking about you and hope you are doing okay.
Love ya,
stacy
Hi Shanon!
I really hope the medicine begins to help Carver. You have so much to deal with. You and your family are always in my thoughts and prayers. We'll hope the weight gain starts heading up to. I'm so glad they are starting to eat well. That's great news! We still need to come visit sometime but Charlie's got a runny nose now (and I bet he has one all winter now that he's going to a sitter in the morning! Yuck!)
Still hope to see you at the NICU reunion. We're mtg next week to help plan and I may mention that we need to think of some ideas for how to deal with germs etc of those who are more delicate!
Love
Neva
Sounds like a lot has gone one lately..sorry little missy had a cold. I hate when the kiddos are sick. I hope that the muscle relaxer worker for Carver. Bless his heart I can only imagine how he feels...I will definately keep both your sweeties in my prayers!
Dear Shanon, we just have to take it day by day. We will see the neurology again next month.
Sam gained 2 oz in a month. This is the lowest gain weight so far. I wonder if this is common for our kid's age? gain/no gain/or even lost weight? I don't know, i feel frustrated too. I thought he is 19lbs by now , still floating on 18lbs.
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