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Friday, February 8, 2013

This and That


**** Update- fin had another voluntary on her own poop today!!!! Amazing news- yaaaaa!!!!!****

Hi guys,
 
I thought I would update on what is going on with Finley as well as our family.
 
A couple days ago Finley said she needed to poop so I took her to the bathroom and sure enough, she had a BM totally on her own and she felt the need to do so on her own-- that is an amazing sign of possible return of function. We were giddy excited by this event-- Oh how funny that this makes us giddy!! So, we went to the spina bifida clinic Wednesday and it was nothing but more good news. They said the feeling she needed to poop is a wonderful sign that she is in spinal shock and that the function will probably return in time. Funny thing-- the urologist was telling us that he thinks she is in spinal shock and was saying that her bladder is way too stretched out and we need it to go back to a normal size and he thinks her function will return then. He also said that when the nerves are attempting to "reconnect" and send signals that when Finley is in a super relaxed state that she may leak urine. I had always thought of leaking as a bad signal- that the muscles wont hold the contents of the bladder and that was bad. Well in the kid in spinal shock, the leaking is a good thing. The problem with a spinal shock kid is that the sphincter (sp?) muscle that allows the urine to go out has to relax to the point of allowing the urine out. A spinal shock kid's urine sphincter (I guess there is an anal sphincter and a urine one too-- never knew that) wont relax. The muscles wont relax and allow the urine out. With a kid who is regaining function they will have little leaks of urine when very relaxed like sleeping and other times of relaxation. I'm so glad they told me that because on the drive home from the SB clinic Finley fell asleep and when we got home she had peed herself-- not full bladder emptying but just enough that it wet her undies and leggings. If I had not had that explanation from the urologist just an hour before, I would have freaked out and thought the leaking was a bad sign but it actually was a good thing. I emailed the urologist asking if that was a good or bad thing. He wrote back and said it was a good thing but that we needed to cath her more often to let the bladder shrink and when we do he is sure the function will return rapidly!!! Sooooooo excited about that. It seems like she is making little strides. It will take a while-- maybe several months-- but it seems to be coming back slowly!!
 
What is spinal shock?? Well,  Finley had 8.5 hours of SUPER invasive surgery with the spinal column being opened and cut and all kinds of things. I guess the nerves in the spinal are crazy sensitive and when they are disrupted, even mildly, they seize and don't function like normal. That is why you will see people who are paralyzed for months and then will walk again. With mild invasion they seize so you can imagine 8.5 hours of MASSIVE invasion and how much they seized in that situation. I have faith Fin will get her function back eventually. Maybe not to the 100% mark but for sure better than it is now.
 
We are doing really well right now with the whole bowel regimen and cathings. It is no biggie and Fin is in undies 100% of the time. This is awesome and besides having to cath every 3- 4 hours things are pretty much normal. Fin is still having her wonderful home hospital teacher visit every day for an hour and she loves her time with Ms. Hickee. She will be on home hospital for another month or so and we actually really like it for now. Fin never had a ton of time at home with us before she started preschool. It is great for her to be at home with Kev and Emery everyday. Lots of relaxing time just to be-- Finley loves it!! Plus, Fin is in Transitional Kinder. California has always had a ridiculously late start date for kinder-- December 2. CA figured out that was too late and many of the kids were repeating grades or were just performing too low or we were testing for special ed so they decided to move the start date back to September 1 like most of the nation. They decided to incrementally move it back-- last year the cut was Nov 1, then this next year is Oct 1 and then the following year will be Sept 1. In the meantime, all kids who have a September, October and November birthdays have been offered Transitional Kindergarten which is a 2 year program. They do one year of transitional kinder which is way more developmental and the following year is regular kider. Fin and Mia are both late October bdays so we kept Mia out and she is in kinder this year but by CA cut off's she could have been in first grade but would be way too young. We had planned on keeping Fin in kinder another year but when they created this Transitional Kinder program we jumped on it. So, both girls are in kinder but Fin is in transitional and will do another year of kinder next year. Its a perfect program for her as she will be in a perfect position next year to do California's ridiculously academic kinder. Seriously it is so above the developmental level of most of these kid- ugg! Anyway, so by having Fin miss a big chunk of school and have a home hospital teacher is really no problem this year. She is getting 5 hours a week of direct one on one instruction at her level so she is growing rapidly. We love home hospital and another month will be perfect!
 
The other kids are doing great! Ethan just ended varsity soccer (he is the starting goalie and is very good-- had to brag) this week and he only has a week left in the regular season for hockey. Owen will begin spring Jr. High soccer next week and spring hockey for both boys will begin in a month or so. Its been nice having the boys home this week instead of having tons of sports. I love when we are all home together.
 
Mia and Emery are doing well also. We have had sickness running through our home but we are on the mend-- hopefully. Ethan missed 3 days of school last week and the beginning of this one and Mia has been home 2 days- yesterday and today. She seems fine so I'm pretty sure we are all on the mend. Emery has her everlasting runny nose but that is typical-- yuck!
 
Anyway, we are all settling in and are doing well. Ive had a ton of work lately as my district has asked me to pick up 10 Fridays (I have Fridays off) to help out with all the assessments at the high school. I agreed to help out but luckily it is a lot of report writing that I can do at home. Happy to be in "normal" life right now with no craziness. Oh ya, I had a PET Scan which is used to see if Cancer has spread to anywhere else in the body. My Dr. felt like we should do it because with my history of melanoma she thought we could get insurance to approve it even though she didn't think there was a concern but thought we could at least look. It was a HUGE test-- took a couple hours-- but I got the all clear that there is no spread of any cancer in my body!!! I expected it to come back negative since I keep up on the Dr. visits but it was really nice to hear that my whole body was scanned and EVERYTHING came back normal so there are no other cancers hiding in my body-- just gave me peace of mind.
 
So I think that is all. We are all caught up. A few cute pics from my phone. I hope you all have a wonderful weekend.
 
 
 Christy :)
















5 comments:

  1. I'm so happy to read Finley's good news!! Praying that good results continue for her. So glad she has a supportive family. You have a beautiful family!!

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  2. Aw, that's such wonderful news! Glad to hear that all is well. Here in New England, it has been snowing all day and the worst of it will kick in around 10 PM tonight, with howling winds and snow falling at 1-2 inches all night long. Lovely, huh? After it stops tomorrow (hopefully by early afternoon), I hope to get out with the girls to do a little snowshoeing around the neighborhood. Take care!

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  3. Um, that's 1-2 inches PER HOUR!!!

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  4. This is great news!! So happy for all of you!!

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  5. Hi! My name is Brynn. I am so glad your beautiful daughter is doing so well... My baby girl was recently diagnosed with TSCS and I wanted to pick your brain... Seeing your daughter do so well gives me great hope!!! I hope it's okay that I stalk your blog:) and good luck with Finleys "elimination"

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