Sister Inchie

It's Inchie Monday :)

This week's challenge was "SISTERS"........I have two younger sisters, now I wouldn't say either of them are button shaped. I just love buttons and wanted to use some this week. I tried using them for heads but much as I tried neither of my sisters has four eyes. One has a few piercings but it just didn't work with four holed buttons. Here's a picture of my sisters when they were much younger. I'm happy to report that neither of them has a lop-sided or square head the way my button sisters do. 



Patient or Doctor?

Over the years Grace has probably had close to one hundred doctors. Most have been average, some haven't been helpful, one almost cost her her life, but then there have been those few special doctors that I'll never forget.
One YOUNG man was a doctor at Shriner's Hospital. Grace was probably about six and went in for a simple heel cord extension to help her walk easier. It was a quick 20 minute procedure that turned into our first nightmarish brush with death for Grace. She caught pneumonia on the operating table, came out of surgery unable to breathe without being intubated and on a ventilator. At this time the doctors were frantically trying to come up with some miracle drug to help her gain some strength as she lay in ICU.
Along came this doctor. He looked like he was maybe 12 years old. I honestly had no clue he was a doctor the first time I saw him. He looked more like a patient. I never saw this little man  in the room with Grace. He was at the nurses station every night surrounded by the biggest books I'd ever seen. I don't think he ever said two words to my husband or myself. He was just buried in those gigantic books.
We were terrified, as Grace just didn't seem to be improving much.
After about two weeks, we came in one morning and everyone had different expressions on their faces. When we walked in Grace's room we were shocked! Grace was kicking her feet, swinging her legs around in that bed. Now I realize this doesn't seem like much to most people, but Grace couldn't do this normally, not only had she been much weaker, but she had huge casts on both legs.
That lil doctor read through all those books and discovered another case similar to Grace's, this told them which medications to try. After just one dose Grace's strength improved immensely. The nurses told us that the doctors were all but rolling cartwheels down the halls that morning when they'd checked on her.
Now I'm a Christian and let me tell you there were many prayers being said for Grace and for the right doctors to come her way. I'm a little embarrassed when I admit that when I saw that young man searching through those medical books every night I had no idea how hard he was working, and I never expected God to use some little snot nosed looking boy to find the help she so desperately needed. Guess that will teach me to judge a book by it's cover.

Sharing

Just thought I'd share a few things I've learned from being Grace's mom. First off I'd say to trust your instincts. When Grace was a baby she was sent to a specialist that diagnosed her with a syndrome. Well, I looked up everything I could about the syndrome and was never as convinced as I should have been that she really had it.
When she was younger she could walk, although it was more of a march and she never could run. None of these physical limits were part of the syndrome, but I suppose I was in a bit of denial and just went along with what the doctor said. Turns out that nope, she didn't have anything even similar to that syndrome.
I kick myself some days for not searching for the right doctors for Grace sooner. But, when you're in the beginnings of something you can't see what's to come. I think you just do the best you know how to and watch and wait for the next stage in life.
I must also add, if you run into a medical "professional" that you don't feel right about, ask for another. On this note, I must first say that 99% of the nurses, doctors,therapists,lab and x-ray techs we've dealt with have been wonderful. There have however been those few that were horrible.
Grace had a physical therapist in one hospital call her a "big baby"........my big baby was nine years old, happened to have double pneumonia, had been intubated for 2 weeks, one of the intubations knocked out 3 teeth, had been laying in a ICU room for a month , and was awakened every 4 hours for chest x-rays. When Grace said that stretching her legs hurt she was called names. I asked to speak to the therapist outside Grace's room and let her and Grace's nurse know that the woman would not be returning to Grace's room.
I usually overlook things, but some days you just have to trust your instincts and take charge.
OK I've blathered on  enough, thought I'd post a pic of Grace, I think she was about 3 in this pic......It's one of my favorites, she's ALWAYS loved to shop.
P.S. when you see the pic you'll probably be able to hear her say "MOM!! Why did you post that hideous picture of me?" LOL



Inchie catch up

 Fancy

my fancy pants, well not my personal pants I don't need any glitter on my backside it's visible enough

 

Solitude

Nothing like a hot drink and a good book

Home

I must like a happy home



Merriment

Finally, I am caught up on my Inchies.........this week's topic is Merriment. I always loved swinging as a kid. In fact I still do like to swing. Hard to find swings these days which is a shame. I know preschools aren't allowed to put in swing sets because they are considered dangerous. Well, I guess if you're not the brightest kid and walk behind one you'll get kicked. I happen to know this from personal experience I still have the scar by my eye from the stitches. Might not have been the smartest 6 year old but I still love swings. Happy Monday!!

Grace's Condition

My sister and I were talking this morning and she suggested that since it's summer break and we aren't going to school, I could use this blog to help other families that may be struggling with a diagnosis.
The point will be to encourage other families. There are times when you may be so afraid that you don't know if you'll be able to go any further, but there isn't a choice, you just have to keep trudging on.
I realize that many people don't know about Grace's condition and although we live in a society that doesn't mind staring at someone with differences it seems that only young children will ask about them.
Apparently Grace is a very rare bird, and doesn't have a diagnosis. The closest condition that doctors label her with is a very atypical Congenital Myasthenia Gravis. Basically her nerves and muscles don't communicate. If you look up this condition you really won't get a picture of Grace as her condition is much more severe than the norm. Also, the tests she's had to confirm this diagnosis come back normal, so she really doesn't have a real case of mysthenia gravis.
Sounds so confusing, but all we know is somewhere in her body part of it speaks one language and the rest speaks another. try as we might we can't find an interpreture.
Even though she is weak and not able to do some things that the rest of us can, she's still an important part of our world. Her brain works perfectly fine. Her life may be a bit different from other 16 year olds but in many ways she's the same as others. She attends regular high school, has never fallen behind in her grade. She has friends, goes to functions, loves movies, is always texting, and yes has the regular teen attitude. Shes a regular kid, drives us crazy on some days and has us in stitches most other days.
Having a medical condition isn't who Grace is, it's just something she deals with on a day to day basis. So, if you found this blog because you have an ill family member, hang in there some days are tough, but most are great. More to come..........

Summer?

Yesterday was the first "official" day of summer break and can you believe my daughter actually said she was bored and wanted school to start again. I need to mark remember this when she has so much homework she doesn't know how she'll complete it all.
Have been trying to think of some things to do over the summer to keep me from going mad. I can always find things for me to do, but it's not always something Grace has the ability to do or it may not be something accessible.
You would be surprised how hard it can be to find things to do. My example is from a couple weekends ago. We decided to take a little drive to an old west town not too far from us. Now this is an actual old Gold Rush town with shops and museums. It's a state park and on the governments list to close soon due to budget problems. So I thought it wold be fun to visit before it closes. So after driving there, and spending 10 minutes on the main street I knew we'd made a huge mistake. The last time we'd taken Grace she was in a manual wheelchair and we could pull her chair over steps. Well, that's impossible with a power chair, they're just too heavy. I'd forgotten that Grace couldn't get into any of the shops because, being an old town all the thresh holds had a step and the doorways were much too narrow for her chair.
So we scratched this plan and loaded back into the car and drove further. We headed to a pizza parlor in the mountains that is supposed to be magnificent. We found the building which was pretty high off the ground. I'm assuming it was so high because in the winter they'd be buried under a snow. We were thrilled to see that they had a ramp. But upon a closer look the ramp was no way near legal. It was so steep I'm not sure anyone sober uses it. Plus once you got to the entrance using the roller coaster ramp you still couldn't get into the building because there was a step up. Nice try guys, but NO.
Thankfully Grace had a friend with her, so she had entertainment and wasn't as frustrated as I was. We finally found a tribal casino that Grace could get into. They had a nice bowling alley and arcade for the girls to hang out at while my husband and I threw some money away in the casino.
Most people think a ramp is all you need to be accessible, but it's not the case. There are so many places a wheelchair can't get into or maneuver in. So my quest for things to do starts now:)

DONE!!!!!!!!!!!!

The school year is done, finished, gone!!!
Seemed like a long year, and I'm so glad to have a break. Not sure that I really learned much, maybe patience, tolerance, and the ability to control my temper concerning  one of Grace's teachers.
Over all it was a good year, Grace's grades were great. She even managed to get through geometry . I guess I did learn the difference between geometry and geography, just don't hold me to anything.
Not sure what we'll do over our summer. For those that don't know we managed to get a van with better gas mileage so we just might be able to sneak in a few day trips.
I need to catch up on my Monday inchies..... and maybe I'll paint Grace's bedroom this summer. Since I promised to do it for her last birthday.
Thanks for listening to all my rantings. Happy Summer:)

6 more days

I am probably as anxious as the kids are about the end of each school year. It does get old going everyday, or not everyday as is our case.
The seniors are pretty much finished their last day they had to attend classes was yesterday. My sweet ( she tries to act tough but she's not fooling anyone) daughter went to the local bakery/sandwich shop and ordered cookies for her senior friends.
As she said goodbye to them she gave them their cookies. I think there were some tears involved with some of them. One particular senior she's known most of her life. He was in my preschool class years ago and his mom worked with me at the school when Grace was a little older. He's been like a big brother to her.
Some of the other kids she's known for years. Living in such a small community they all get to know each other in elementary school and they remain friends.
Grace has no idea how she impacts others' lives. She is so spunky that it's easy to forget she's in that chair. When you actually do remember it makes her journey through life that much more amazing. She endures so much everyday, but she manages to remain mostly cheerful and keeps enduring.
I was looking through her yearbook and was surprised at how many of her friend's told her how inspirational she is.  She will make a joke of it but I think it takes a lot for someone her age to be so honest and mushy.
Six days to go. I think all of her projects are finished, just finals to go and then a little break!!

funny questions

Some days are just plain weird, this was one of them. Nothing in particular, just one of those days where it seems as if everyone is saying things that don't make much sense. Aside from the things I heard the students saying, most of which I'd rather not hear, there are days that the adults don't make much sense either. Today a teacher was quite excited about a report on flamingos. I must admit that she was more entertaining than the report was, it was her questions that had those of us in the back of the room cracking up. Maybe it was how serious she was when she asked 'Who would eat a flamingo?" It was almost as if she was asking which of the students was going to volunteer. But I almost wet myself when she asked how many baby flamingos came out of an egg..... I think she was serious! Oh my goodness, I think it's normally just one egg ,one chick. The poor girls giving the report looked at her thinking it was a trick question and that they'd missed something important.
I guess I'm just happy to know I'm not the only one that asks "interesting" questions. Nine more school days to go!!!!!!

Chair Woes

As we were leaving for school this morning Grace's chair made a loud crack and something was not right. Her chair has a really cool tilt function that allows her seat to tilt back and helps her stay comfortable, not get pressure sores from sitting all day and also helps her position herself for optimum lung functions. Well, her seat will tilt back but not come back down, every time she tilts a little it goes back a little further. At this point shes afraid to keep trying to get it to come back down because the way the switches work, it has to go back a little more before it tries to come down. She'll be in a full tilt and there's no way she can breathe all day flat on her back. Have an appointment tomorrow to have it looked at.
Funny on a day that she feels good and was ready to tackle the world she's grounded. As for me I'm not looking forward to the drive to have it looked at tomorrow, especially with gas prices sky high, but on the bright side I have time to clean house :)

Pink

Happy Monday
This week's inchie is all about pink  I have no idea why but I wanted to use beads this week. I also wanted a yellow background against the pink beads. I thought I would make a flower, had some seed beads to use but it was UGLY........somehow my pink turned into a sun? I don't know what it is, but it is pink. :)



personalities

Only 15 days of school left for this year. The big push to finish is upon us. Grace finally caught up in all her classes last week , now she just has to get all the year end projects completed, then benchmark and final tests.
Looking back I think the greatest thing we've both learned this year is how different personalities (talking bout teachers)  react to her needs. Seems like the more secure in themselves types were more understanding. The "I'm so intelligent and you're not" type really can't see beyond themselves.
Grace had mostly great experiences with teachers, but there always seems to be one tossed in that just doesn't know how to work with someone that might miss more school that normal. Doesn't seem to me that it would be too hard to set papers to the side for Grace or be forthcoming with her about what assignments were assigned when Grace asked what she's missed.
Will be glad to not have that teacher again next year, I think if she's put in that person's class again I will request a change.
I guess there could be worse things going on, it's just been frustrating!