Tuesday, March 31, 2009

Serial Casting - Week Three

Week three of serial casting began yesterday and Darsie is actually castless for a couple of days! She had her pink castle cast removed yesterday and we were encouraged to let her run around barefoot all days yesterday. We all shared a luxurious bubble bath last night and have been enjoying the "freedom" although D is having some trouble walking because that foot is just soooooo weak.

Some photos of the aforementioned foot:

She has some wear spots and plenty of dead skin but she is walking so nicely and we are very encouraged that this will help out.

And a video of her walking:

Wednesday, March 25, 2009

Second Week Serial Casting

I've been trudging away on our taxes and my brain feels like an egg that you cooked too long and the yolk has become solid. I've got a list a mile long on top of that so I'm feeling just a tad bit frazzled.

Anyways, Darsie had her cast removed and replaced on Monday, this time going with pink. She was able to run around for a good half hour before they put the cast on again and I almost cried, the changes were so amazing. I know that this extreme effect isn't permanent but seeing her walk flat on her foot was like a mini-miracle.

Just a few photos to share with you all. None of them are edited, so please excuse the beautiful colors. Hopefully everyone is having a beautiful week.

Wednesday, March 18, 2009

Serial Casting

At Monday's physical therapy appointment, Darsie's foot was serial casted. Those muscles that had been sooo tight prior to Botox were still too strong and her foot was still twisted. The cast will help to further weaken those overly strong muscles while also correctly aligning the joint and foot. When we go back next Monday, the cast will be removed and the foot will be reassessed and recasted if necessary (from what I've read, serial casting lasts approximately 4-6 weeks).

Darsie chose a red cast and we decorated it with ladybugs once home. I was certain she would choose pink. Her PT gave her an extra large Hatchback shoe to wear over the cast and it works out great. Granted it isn't the most fashionable getup in the world, but it works fantastically. She can walk really well, she can dance, she can do everything but jump into a bath tub at the time being. She is so adaptable and such a trooper.

I don't know what Darsie is doing with the weird licking of her hands and the door in this video but I did want to show how well she can get around with a big red cast on her leg.

And some photos of both girls.

Red socks to match the red cast.


This is probably horrendous of me to say, but I am the mama here...but doesn't that big black shoe remind you of all the documentaries on elephantitis?
Elise has been a bit jealous of all the attention that Darsie has been receiving.

Tuesday, March 17, 2009

I must have a lot on my plate or something...

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.


Monday, March 16, 2009

"Anonymous Posters"

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".

If you have problems commenting, please let me know at lilliputianmama AT gmail DOT com

Post-Botox by Five Days

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.

Wednesday, March 11, 2009

Botox - Take One - Our Experience

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!

Monday, March 09, 2009

More Sickness, More Snow

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.

Friday, March 06, 2009

Busy as a Beaver...or Lazy as a Sloth

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!