For some reason, I was TOTALLY and 100% surprised that today was Saint Patrick's Day. I had myself convinced that it was the 14th and I couldn't for the life of me figure out while I was still getting all these e-mails about Saint Patrick's Day sales and whatnot.
Oops.
I changed my settings so you have to be a registered user to make comments here. Sorry, I was getting tired of the unbased and out-there anonymous comments. I don't care if you don't agree with me, just use your "name".
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On Saturday (post-Botox three days) we really started to see the effects kick in. In the morning, Darsie's foot was nice and relaxed and super easy to flip into her DAFO. She walked gorgeously! But by Saturday evening, poor D could hardly walk due to those uber-strong muscles being paralyzed and her weaker muscles having to up the anti and get to work. She has been falling a lot and even complained of some foot/calf pain last night (Sunday). She is doing a weird sort of shuffle walk at this point but is able to get to and from places. She walks really well with her DAFO on, so we've been leaving it on almost all the time currently. I don't know if other families experienced this drastic of an effect or not, but it is somewhat disconcerting while being triumphant at the same time, if that makes any sense. We are off to the physical therapist this morning and will more than likely serial cast D's foot today.
Anyways, pre-Botox by six days, dance party.
And taken just this morning, post Botox by five days.
Let me preface this post with this video:
Since taking this video, D's poor foot has only gotten worse. She has been getting lots of red rub marks from her DAFO (which works, her foot is just stronger right now). She looks great in her DAFO and shoes, but out of them, she is walking way up on the side.
Fast forward to today, we headed towards the Children's Hospital bright and early (actually, it was still dark and Darsie was telling us that it wasn't morning yet and that we needed to go back to bed - I agree!). Because we were planning on sedating her, we were checked into the day surgery unit. We played around for a bit before heading towards the Sedation Station (or whatever it was called...oh wait, Sedation Services. I think I like Sedation Station better). There they took D's history and applied three huge gobs of numbing cream with a clear sticker to various spots on her arm. We headed to the playroom for a bit to let the cream go into effect. After about 20 minutes, we were called back to the Procedure Room (D actually drove there in a plastic car) to insert her IV and get her Botox shots done.
My husband held D while the nurse inserted her IV. Of course D cried, it was painful! Ended up, the IV didn't get placed. D has a lot of scar tissue on her hands and arms from the months she spent in the NICU and the hundreds of times she must have been stuck for blood, IVs, etc. etc. Second shot, they decided to try to lay her on the gurney and insert the IV. A second failed attempt as the IV just didn't take. They brought another nurse in to check D's veins and while she thought that with a tiny needle she could get an IV started, her doctor was confident that we could power through the three Botox shots quickly and successfully with just a local numbing agent. So, that is the option we went forward with. She cried and screamed throughout it but as soon as it was over, she was fine. I can't imagine that three muscle shots would be pleasant for anyone, but baby girl powered through it and by the time the three shots were done with, she was more concerned with getting more stickers and cool bandaids for her pokes.
Because she ended up not being sedated, we were able to head out after only being there an hour and half or so and go eat breakfast. Yay for coffee! Yay for food!
D conked out pretty quickly once we picked E-lou up and headed home (they both did, actually, must have been the too early morning!).
On Monday we are tentatively planned to start serial casting that foot/joint as well to help improve range of motion and help to "break" that muscle's memory.
I'll keep you all updated!
I've come down the cold and it has settled in my voice box. So, hooray! My voice sounds like I've been smoking for 100 years, at the very best. Besides some stuffiness and the overabundance of mucous, I'm feeling pretty good, miraculously.
We've got more snow falling as I type. I'm just going to proclaim this the weirdest winter ever.
Darsie is scheduled to have her Botox injections on Wednesday and I have received absolutely no paperwork or instructions from the hospital. I need to call them, so with my croaking voice, this should be fun and entertaining. She is complaining of ear pain this morning. She has always been so healthy but these last couple of months sure have been sickly for her/us. Her foot is really starting to draw in, though, so I'm hoping and crossing fingers and braiding hair that she is able to have the shots done. She needs this so bad. We need this to work. For at least a bit.
This has been a real wonky week for me. I think the downcast weather has had a bit to do with it. It could also be that today is my birthday! Hip, hip, hooray.
Anyways, some photos of the girls....in their total weirdness, which we celebrate here in our household. Complete with dance parties every night featuring Toto's Africa.
Oh, and another block for my virtual quilting bee. Gorgeous fabrics!
