Friday, July 12, 2013

Surgery for Sadie

Short version: Sadie's having hand / arm surgery August 2nd in Atlanta.

Long version:

Sadie is 7 and has had 4 surgeries on her arms and hands. Unlike Hannah though, hers haven't been spread out. They were all within 10 months and occurred when she was 3-4 years old.  Most know, but she was born missing her radius bone in her left arm. That caused her wrist to turn inwards and she also had no thumb on that hand. In her right arm, she has a radius bone that is "almost normal".  It is just slightly shorter than normal. The result is her wrist is fine, but she had a "floppy thumb" that was kind of just hanging on by skin and totally non-functional.  She also has a "radio-ulnar synostosis" which just means that at one point her radius and ulna bones are fused where they shouldn't be. Not a big deal and some people have it and never know it. The only effect is she can't fully rotate her arm from palm down to palm up. But she (like most who have this) compensates by being more flexible in rotating the wrist on that hand.  Here are Sadie's hands before her very first surgery that was in December 2012.

She had four surgeries to straighten her wrist, and create thumbs on each hand.  As part of the process there was a metal external fixator and multiple casts and splints. There were also multiple trips to Atlanta (Weekly for probably 2 months, than bi-weekly, than weekly again, then bi-weekly, then monthly, and finally after about 18 months we moved to every 4-6 months, which she's still at. The reason we've still been going is she outgrows her nighttime splint every few months and needs a new one. Here's some old photos from that time.



Here's a pic of her sweet little hands after her wrist was straightened but before she had thumbs.

Finally, she got thumbs. That was the most exciting part for her. And honestly, the thumb surgeries were the most amazing to me.  She could grasp things with her thumb and fingers for the first time and she learned to use it so quickly! It looks and functions like a natural thumb




All this took place between Dec. 2008 and Oct 2009.  Since then, her thumbs have been perfect.  She uses them well and there are no issues at all. Her wrist however has slowly turned back in. There are many reasons for this. Some are just left to "chance". Nationally, there's a 30% chance of this happening. But I think there were also some issues Sadie had that impacted hers. For one, because of her age, a lot was happening in a short time because her surgeon felt if the thumb surgeries weren't completed by about age 4, it would be very difficult for Sadie's brain to make the switch to use them as thumbs as effectively. We also tried to combine surgeries when possible to avoid too many at one time. For example, at one point she had a pin in her wrist holding it straight while things stabilized. That pin was taken out at the same time she had her thumb surgery on that hand. The timing was right for either. But I'm not sure the timing was right for both together. She had significant swelling after that surgery and when she was placed in a cast, it had the difficult job of needing to stabilize the thumb AND needing to stabilize the wrist. When the swelling went down, her wrist "slipped" slightly inside.  As soon as I noticed, I called her surgeon and was able to head down to Atlanta that day to get a new cast, but I've always wondered if that effected things in a negative way. Add to that, when her first cast came off, she got a splint that again needed to stabilize the thumb AND needed to hold her wrist in place and that proved very difficult.  Once she moved to a wrist-only splint again, things stabilized. But ever since then her wrist has been slightly more turned in at each visit (they do x-rays and measurements).  Overall, that's not a big deal. It's never bothered Sadie how her hands look.  And, well, I just love her sweet little hands. She is very functional and can pretty much do what she wants. But there are little things that I see her have a hard time with, mostly because that arm is so much shorter than her other one.  At some of our visits, our surgeon mentioned possible further surgery. But I wasn't ready to go there and he is not pushy about things like that.

About the time school was out, I noticed Sadie has outgrown her splint again. So I made an appoitnment to take her to Atlanta. We went this week.  But first, Sadie and I had a chat.  She had mentioned her hands several times.  So I asked her that if she was given the option of leaving her hand just like it is, or having surgery again to straighten it, what would she want? She immediately replied that she wanted surgery to straighten it. I asked why and she said "so I can reach things with both hands".  That is one of the things that's difficult, though we've always found ways around it.  She also later said she wants to be able to do the monkey bars (can't reach it now with her left hand) and turn a cartwheel.   But I feel like at almost 8 years old, Sadie is old enough to have a strong voice in this decision. I get the final decision, but ultimately it's her body and she deserves to be listened to.  When we were at the doctor, I shared with him my conversation with Sadie. He agrees and thinks we should plan on going ahead soon.  He took lots of time to answer all my questions, which mainly were about "what will be different this time? How can we prevent her wrist from turning back in again if we do it?". The honest truth is we can't totally prevent it. There will always be a risk of that. But there are some things that might help. I personally feel like the fact that her thumb is no longer a consideration will be a big help. All casting and splinting that will come as part of the process will only need to be concerned with stabilizing her wrist. Her thumb is perfect and there is essentially no risk to it. He also talked to Sadie very frankly and told her what all was involved. She's been through it before, but at 3 years old she doesn't remember it all very well.  She still wants to do it.  I don't know if she'll be able to turn a cartwheel or do the monkey bars when its all over - she might and she might not. But she should be able to reach things with both hands better. And she'll have the opportunity to try.

So, she will be having surgery August 2nd! I asked to do it either before school starts, or wait until October, just for scheduling purposes.  On that day, Sadie and I will head to Atlanta for her to get a fixator placed on her arm. It will be outpatient surgery. Last time, he wanted us to stay local just in case so we stayed in a hotel in Atlanta. But after 4 previous surgeries with her, this time I'm pushing to just come home that evening. She's always done so well afterwards. She'll have a couple weeks to rest and let it heal before we go back to remove the bandages. Then  I'll begin turning the screws on it daily and cleaning the pin sites daily. There's always a risk of infection with the pin sites, and she did get one small infection last time. But a round of antibiotics cleared it right. up.  Plus she will come home on antibiotics to try to prevent infection from the beginning.  She'll have a plastic cover to wear over it and she'll be able to go to school and do everyday activities with it. I don't know how long she'll have it. Last time she had it almost 3 months. I turned the screws 6 weeks and then had to leave it on another 6 weeks to stabilize. But her wrist doesn't need to move as far this time. (Even though it's turned in, it hasn't turned all the way back in to where it was). We'll be trekking to Atlanta weekly during this time for x-rays.  When her dr. feels she's ready, she'll have a 2nd surgery to remove the fixator and "centralize" her wrist.  After that will come a cast full time for about 3 weeks, then a splint full time for possibly a few months (can take off for baths, etc.). Then she'll move to a night-time splint like she's had and she will continue with that until she's done growing.  Eventually we'll move to bi-weekly visits, then monthly visits, and then finally we'll be back to where we are now - going in whenever she outgrows a splint.  It'll be a long process, but I feel like I need to give Sadie this chance while she's young enough that it's still an option.  So, say a prayer for my sweet girl - that pain / discomfort is minimal and that it "works" and gives her the results she's hoping for.

Wednesday, July 10, 2013

Catching up, Again! First half of 2013

Well, okay. So I haven't written in um, 7 months! Does anyone read this? I wouldn't hang around for one post a year! But I write for myself and to remember, so that's okay.  So..2013 so far..

January 2013

Medical / Health - Sadie had a great visit with her nephrologist and we were given an "all clear" to continue on our merry way for another year.  She continues to do great and other than a slight little issue that takes 1 little pill, she has normal kidney function and she's healthy and growing well.

Hannah got braces this month, and a palate expander. She was very excited about it!

Just for Fun - We had a mini snow day. It's so rare that we took full advantage of it.

February / Early March

Medical / Health - Hannah and Sadie both came down with a strep-like virus, though both had negative strep tests.  Sadie's followed a typical course though: get sick, go to dr., get antibiotic, get well, go on with having fun.  Hannah wasn't so lucky. She began an off-again, on-again illness. She'd get well, go off antibioitcs, come down with something again, repeat. That pretty much lasted for February and March.

Just for Fun -Despite the on-again, off-again sickness, Hannah managed to have some fun and "be well" during times too. She competed with her dance team at a couple dance competitions and her solo won first overall for her division for the state dance championship. Sadie meanwhile was quite proud to run in her first Mercedes Kids Marathon event.  And we all enjoyed celebrating Chinese New Year with friends. Finally, we spent a fun weekend in Mobile at the end of Spring Break for competition and fun with our dance friends.  Other than the competition, we also explored the battleship, visited the beach, and participated in two impromptu St. Patrick's Day parades. Lots of fun for everyone. :)

Late March / April

Good news is Hannah finally seemed to shake whatever viruses she was fighting. Bad news is she came down with something new. HSP - Henoch Schonlien Purpura. It's an autoimmune disease that caused her to have a weird rash (purpura) all over her legs, joint pain (fairly severe at times), tiredness, and occasional headaches.  It can also cause other things such as severe stomach pains but Hannah was lucky on that count as she never had that.  It resolves on it's own and kids typically fully recover just fine. But there is a small chance of kidney problems. So because of that, Hannah had a visit with Sadie's nephrologist and also had to get weekly labwork for 6 weeks at her pediatrician's office.  The whole ordeal lasted about 8 weeks, with it getting progressively milder as time went on. The first week she could barely walk and was in a lot of pain. But after that, she would have occasional days that she had joint pain and other days that she had no pain at all.  Slowly the "no pain" days outnumbered the others.

The first week of this HSP had Hannah quite sad because she missed her class's trip to 4H camp. (But it was made up to her in May when she got to go with another class).  But despite all her health issues during this time, she continued to dance when she could and went on to win 2 more competitions with her solos.


Sadie meanwhile started soccer season and as always had a blast!

Hannah continued to have flare-ups of the HSP, but by this point she was in the "pretty mild" stage. She was no longer having any pain..just a few spots of rash here and there with many days of nothing in between. We could see the end in sight, and she pretty much ended for good about the time school got out.

And we had some good news medically too. Hannah had a tympanoplasty on her left ear in Feb. 2012 to repair a hole in that eardrum (she still has a hole in her right). Well, ever since then, she'd been battling fluid in that ear again and her ENT was ready to put a tube in it. Normally tubes are not a big deal. Hannah had them for 3 years when she was younger. But this time it's different because it would be a tube in an eardrum that already has scar tissue from a  repair. The danger is that the more scar tissue, the more problems it can have long term. But the other side is that Hannah was testing with mild hearing loss. At one point it even dipped to moderate loss in that ear because of the fluid.  She misspelled a couple spelling words in her school notebook simply because she heard the word wrong.  So while her grades remained good, it was starting to affect her. So finally her ENT said he'd give her 6 more weeks to resolve it on her own.  But if it continued to affect her hearing, he would recommend going ahead with the tube, even though he didn't really *want to*. That was late March. But when we went back in May, her hearing was perfectly normal.  So for now, she remains tube-free in her ears.

The girls continued their dance / tumbling classes and were adorable in the end of year recital! And Sadie continued to be a soccer star for May.  And the great folks at Hannah's school worked it out where she could go to 4H camp afterall, just with another class. And thankfully, Hannah had friends in some of the other classes going, so she was very comfortable with that and she ended up having a great time! It's "the thing" of 4th grade so I'm so glad she got the opportunity to go.

We also celebrated a lot in May.
Sadie's Family Forever / Gotcha Day (5 years with this sweetheart!)

Mother's Day

Hannah's Family Forever / Gotcha Day (7 years with this amazing girl!)

My Birthday.  My dad came down and built the girls a swingset and me a shed.  We love them!


And that brings us to June, which pretty much starts summer fun. I think Summer will need a separate post. So stay tuned. :)

Loving this Season

Um..wrote this in March. Just now posting. :)

I'm loving this season of life. Not this season, weather-wise. But I'm loving this season of my family.  The girls are growing so fast and at 9 years old, Hannah's already on the brink of "tween". Yikes, some days I'm not sure how that happened. And some days, the "drama" and "moodiness" of pre-puberty is already there.  Storms can brew up quickly. But overall, despite sometimes missing the "little kids", I'm learning that I really enjoy this "big kid" stage.  So, a list of why I am enjoying parenting a 7 and 9 year old.

* Conversations. We have some really cool back-and forth conversations these days.  The girls have lots of questions about life.
* Not as much "all about me". Oh, it still shows up sometimes. But they are learning give-and-take, listening, and considering another's perspective.  And filters!! They are *finally* developing "filters" and sometimes use them.  For example, I was checking out at CVS one day last week and  had Hannah with me.  The lady checking me out said I looked familiar and after we talked a minute, I realized I knew her from Kairos (prison ministry). We chatted a couple minutes and then left.  As soon as we got outside Hannah asked "so is she a VOLUNTEER or someone you met IN PRISON?".  And she had been thinking that the whole time we were talking, but she didn't say it until we left. That is huge!  Because Hannah a year or two ago sure would have looked right at check-out lady and asked "were you in prison? What did you do?'. Filters are a lovely thing..think whatever, then filter what you actually *say* in public.
* Games with Sadie -  She loves playing games. And now that we are way past Chutes-and-Ladders and Candyland, I enjoy playing with her. Some of our favorites are Sorry-Sprin, Uno, and Monopoly.  She and I played monopoly for 3 hours on a recent weekend (broken up into 2 days).  She's quite good at the games too. (Hannah's not so much into games).
* Books - I still read to the girls a good bit.  Hannah's of course a very independent reader, and Sadie's learning. But we enjoy sharing books together. And now we are sharing more advanced story themes and I'm really enjoying that!
* Movies - okay, so they still like some barbie princess movies, BUT sometimes get interested in non-cartoon movies that I can enjoy with them.
* Chores. Sadie still LIKES chores, and Hannah realizes it useless to complain too much. They are much more capable now than when they were younger. In fact, they often do all the laundry except the folding. Neither likes to fold clothes. I don't mind that part, so it works out great.  And they can both load the dishwasher and start it, put dishes away, take out trash, and make their beds.  Hannah can vacume. (Sadie still finds this a little difficult). They can sweep.
* Food.  They can do a lot in the kitchen. They don't really use the stove without close supervision. But pretty much anything else in the kitchen they do. And they do scramble eggs and flip pancakes and other such things with some supervision. And Sadie LOVES to help cook.