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 :)

Friday, February 1, 2013

Home 11 Days!!

Hi everyone. I wanted to touch bases with everyone as I know there are so many of you out there praying for our Finley.

We have been home from the hospital 11 days now. It's been a crazy ride but we are settling in. We had a birthday party last weekend and Finley had a blast. She had been looking forward to this Disneyland party for weeks and I could not bring myself to not let her go. I knew the pee and poo were going to be our issues-- and they were-- but it was such a wonderful time with Ava and Laila that I could not keep her home. She managed well and had an amazing time. Im adding a few pics of our time.

We are continuing to pray that Finley's bowel and bladder function will return. We still have no function at all. We have to catheterize her every 5 hours and we are on a bowel management program that is tricky. The catheterizing is pretty easy but something you have to think ahead about and that is not my strong suit. We had to go to the Dr. for a urine specimen and we got almost all the way there and I realized I forgot her Cath bag that has all her goodies for cathing and called the Dr. to see if they had any catheters there - NOPE-- so I had to go all the way home to grab catheters--Ugg! I just am not good about remembering all that--shoot I cant even remember diapers for Emery so this has been a challenge. Im sure I will get use to it but its been a challenge. The poo thing is another thing all together.

---- This is TMI so if you dont want to read about poo-- skip this--

At this point there is no bowel function. The key to a bowel regimen is to get the poo to a certain consistency and train the brain to signal having a bowel movement at the same time every day-- right after dinner. The trick is to have the stool travel down and be ready to void at the same predictable time each day and it to come out formed so it is not too loose and causes cross contamination with the urine-- catheterizing. The problem is in the early stages of the bowel regimen it is hard to know how to get the stool to that consistency. Incontinent kids tend towards constipation so they often need stool softeners to help keep it soft. Furthermore they often need a laxative to get the bowels to push out what is ready to come out. Finley eats a super high fiber diet with tons of fruit and vegys. We were also giving her miralax to keep the poo soft but I think we were overdoing it and this early on it is tricky and you have to kind of experiment to get it right. At first when she was discharged it was just coming out at will all day. It was horrible and since Fin has some feeling down there (which is an awesome sign that function might someday return) she was very uncomfy with anything in her diaper. We then got it to a good consistency and then started up on the miralax and it got too loose again last weekend and we had some major accidents at Disneyland. We have discontinued the miralax thinking she is getting enough fiber in her diet and now things have firmed up and she is back in panties and no diaper-- yaaa!! If we can maintain the consistency then we should have no leaks in between her nightly bowel movement and she should easily be able to wear undies. She does not leak any urine (which is another good sign of possible return of function) so panties are manageable. Out of all the things that Finley has to deal with, she hates the bowel part the most. She hates sitting on the toilet and hates pushing (which she can push which is another great sign of return function). We give her a glycerin suppository before sitting her down and that seems to get things moving pretty well. So, as you can tell, the bowel regimen is tricky and while it is super easy once things have settled, it takes time to get it perfected-- if it ever can be perfect :)

We have had a few hickups this week that are side effects of the catheterizing.  With incontinent kids, you are having to push a catheter in many times a day--- hence pushing bacteria in as well. When a kid in a diaper has poo all over, they then pee and it clears the ureter and any contamination is pushed out. With a cathed kid, we can clean the area as much as possible, but we are then pushing in and bacteria ends up inside the bladder. Consequently, kids that cath OFTEN urinary tract infections. Many of these kids are put on a daily dose of antibiotics to keep the infection away. Unfortunately, after only 13 days of cathings, Finley has her first UTI. She had a fever and was not feeling well and we could tell her urine had all the symptoms of a UTI. She has been on antibiotics for 2 days now and she is now better but I worry about having to fight this all the time.

-----OK, TMI is done -------

So that is what is up with all the bowel and bladder stuff. We are still praying for Finley to be healed and the function to return. There are tons of kids who live with incontinence their whole lives and it is no big deal and they are as normal as can be-- you would never know they are incontinent and if that is what Finley's future is we are totally fine and prepared for it. The hard part of this is that Finley has been a continent kid up until surgery. She took care of her own needs and did it well. To now be 100% dependent on us to cath and deal with her bowels is really hard. I mourn her loss-- I really do. It breaks my heart that this happened but I also know God is HUGE and has a plan and if that plan is to return function then it will happen and if it is for Finley to be incontinent her whole life then that is what we deal with. God knows and has it under control. We have faith in that!!!

Finley is off school for 6-8 weeks. We have enrolled her in home hospital through the school district and they send a teacher to our house 5 days a week for an hour each time. It is great!!! Her teacher is a first grade teacher who is awesome. She is working one on one with Fin and really pushing her to improve her skills. Fin loves working with her and we are so very pleased this is available to us.

Fin had a physical therapy eval this week and they honestly said there is not much to work on besides working on strength in the one leg. Her limp is gone and she is really back to normal in her motor function. I think she is a little hesitant to jump off things but overall, she can run and jump like normal. We are not letting her do those things yet but she can do them so we are not going to do physical therapy at this point-- she just doesn't need it.

We go to the spina bifida clinic next Wednesday and we will be able to get a lot of help with all this stuff. Im anxious to hear what they think about return of function as well as more help with the bowel and bladder stuff. The RN at the SB clinic has been awesome and has guided me through a lot of this. I have also had lots of wonderful woman on my Facebook Spina Bifida support group that have given me lots of tips and essentially took me through this whole bowel thing. Honestly, without these woman, I have no idea what I would have done. We were discharged with little to no guidance on the bowel thing and if I didnt have these woman Finley would probably be in diapers with no regimen at all. These woman have been invaluable!!!!! Thanks ladies-- you are the best!!!

The other kids are doing well. We are all managing through this and it has taken us all to gather together and support each other. The kids have been great and our family support is always invaluable. Thank you all for your prayer. We cant tell  you how much it has meant to us in this tough time. This is a lot for all of us and has taken a lot of adjustments in our lives and in Finley's too. We continue to appreciate your prayers specifically for Finley's bowel and bladder function to return!

Mommy and Finley

All the girls at the party on the tea cup. What a fun party Laila threw-- the girls wanted for nothing-- what a special time for all the girls and specifically for Ava-- front right- she had a wonderful bday!

Tea Cups-- love the look on Emery's face

Laila booked a character breakfast which the girls loved!!!! They got to see a ton of their favorite characters and get their autographs!

Gotta love tinkerbell

And Silvermist

And Auntie Laura got all the girls face painting.

Finley sorting the little people for her teacher