Tough Pics

Well, I titled this "Tough Pics" because I feel it's important to share something with anyone with a child in the hospital. Take their Pics.
Sounds easy enough, but it's not. When your child is hooked up to several IV's, art lines, feeding tubes, catheters, breathing tubes and heart monitors (I know I've forgotten something) it's hard to take their picture. Not because you love them any less, seems that you love them more at these times. Not because all those tubes are unattractive, for they are lifelines and become blessings. But because while you take them, in the back of your mind you wonder "Is this the last picture of my child I'll get to take?"
But take them anyway, we have pictures with her many visitors, nurses, doctors, x-ray techs, helicopter pilots, respiratory therapists and our daughter's favorites the therapy dogs and child life specialists. These are her trophies. She may not have looked her best at the time but they tell a story. One of fortitude and enormous courage.
I have to admit I don't know where all those pictures are, they're here somewhere, but very hard for my husband to look at. They bring back too many memories. But I know they're tucked away in a box, we run across them at times. I have a few that I can get to quickly, but they aren't pictures I can post. Not because they're too heart wrenching, but because our daughter has almost always refused to wear clothes in the hospital. The steroids she's on to help her breathe make her so hot. I usually have sweats on and a blanket over me while she's the exhibitionist.
Anyway, take those trophy pictures, even give them a camera if they're old enough, we did that and have some lovely pictures of me sleeping in a chair with drool on my face. I'm thankful I've never had to positively answer the question I've wondered about. The one where I wonder if those pictures would be the last. God willing, I won't have to. Take Care.

Harmony in This Mess?

This Monday's Inchie challenge is "Harmony" I like music, but can only tell you if I like something. I can't hear the difference in pitch, harmony etc. My husband plays guitar I play the radio. Anyway here's my unmusical harmony inchie.

And this is a shot of my unharmonious table where I play. I'm working on three artist trading blocks. A couple for a swap I'm in and one for myself. If I can manage to complete them all I'll post pictures. I just hope I can contain the "artistic workspace" to one room :)



Wise Words

When my daughter was about two she had to have tubes put in her ears. We were terrified, she thought it was great fun. The next year she had to have them again, she was so excited, until the nurse gave her a shot. When I asked why she had to have a shot, we were told it was to calm her before surgery, something the anesthesiologist ordered. I thought it sounded strange since she had been calm and ready to go. Anyway, she got the shot, was furious, and definitely NOT calm.
The next year she was four and needed tubes yet again. She was not happy this time. She didn't want that shot! When we went for her appointment with her ENT I asked him why she had to have a shot to calm her when she was already calm. He said she didn't have to have any shots. After a long conversation about the previous year's experience,he finally gave me the best medical advice anyone had ever given me. He said, " You're the mom aren't you? YOU never let anyone do anything you're uncomfortable with even if it's me!"
I have to say it had never occurred to me that I didn't have to do what the doctor said. They were supposed to be the ones that knew best. This sweet man had opened my eyes and taught me a valuable lesson.
A few years later on top of a very long hospitalization for pneumonia, we were told that Grace was going to have to have a permanent feeding tube because she was underweight. Yes, she was always a skinny kid, but the feeding tube seemed to be too much. After all, she had been sick for about 3 months, she had lost weight. I argued with her doctors and was told that she was just too skinny and had to have the surgery. My husband had gone home to work and I was at my wits end about this. He told me not to let them do anything until he got back in a couple days, which happened to be the day they planned on the surgery. After talking with our daughter about it and a lot of prayer, we asked to meet with the doctor and told him we wanted to wait 6 months for the feeding tube. We suggested that a nutritionist meet with Grace and we give her the knowledge and power she needed  to put on some weight. She has to be the only person I know that is encouraged to run through the McDonald's drive through and order fries and milkshakes. It has taken a while, although still thin, she doesn't have the nutritionist telling her she needs to gain more weight. Now they just tell her don't lose any.
I don't think we would have had the courage to go against the doctor's recommendation on the feeding tube without the ENT's words echoing in my ears. We were just not comfortable with having an unnecessary surgery.
Oh almost forgot, back to the four year old that didn't want the shot. I'll admit it took insisting on talking to the supervisors and the anesthesiologist, but she didn't get that shot and walked into the pre-surgery room with a huge smile on her face.

Every Inchie Monday:Woman

It's Monday

Time for just one inch of art

This week's challenge is "Woman"

I made several women, but kept going back to this one.Was going to put curly ribbon on this gal for hair when I realized women don't always get to have hair. I wasn't wearing my glasses when I drew her so she's not too pretty, but you get the meaning. She's for my mom and my bestie Jerrie "ROO"

Hospital Stays

Hospital stays, my daughter has spent more time than we'd like in hospitals. She's stayed for simple procedures that just required an overnight stay and she has also spent long visits in ICU. The longest was almost 10 weeks.
Most of her hospitalizations haven't been near our home. The children's hospitals she has been in are well over an hour away.
There are so many things you don't think of when you're away from home for an extended period of time. Thankfully my sister lives close and has always been our gal to go to in these times. She has done everything from clean out our fridge to bury our cat that died while we were gone. She's probably even laundered my dirty undies and brought me extras while we were gone.
Grace was usually in good spirits when she was hospitalized. I can only think of a couple of days that she didn't want visitors. Both times were because of unbelievable pain.
It's not easy to ask people not to come on those days, but during rough times the patients feelings are more important than the visitors. On that note I must say that I am so thankful for the visits we had. My mom didn't drive long distances and we have a couple friends that worked a trip to visit into their weekly plans and would bring my mom and sister to visit. Grace was always so excited to see them.
If you have someone to visit in a hospital far from their home I would like to make a suggestion. Find out what they want from home, especially if there is a child involved, Grace has a doll that went through every hospitalization with her, some days she just wanted a certain type of candy. It's not easy to be a parent far from home either, I remember one year we had to have someone bring us our tax things so I could finish our  taxes while we were there. Some days you have no idea what you want because you really can't think. Just a homemade sandwich can be a comfort. Mostly it's just a hug or phone call that helps.

Real Empty Nest?

The Ricardo Family

About eight weeks ago this lovely pair of barn swallows decided that the eve right above our front door was the perfect place to build their mud nest. I knew they were trying to build a nest near the door and I have no idea how they managed to build this thing without our seeing it until it was finished. My husband wanted to knock it down, because having a family "relieving" themselves right above our door was bound to be messy. Being the softy he is, he let me have my little family. I am an I Love Lucy fan and named them Lucy and Ricky. (How could he get rid of them after I'd named them anyway?)

Didn't take long before we heard the little hissing/crying sounds and the four little Ricardos made their first appearance.

They're almost grown here, this is my favorite picture. There really are four of them I just never get a pic of them all.

Yesterday the little Ricardos started venturing out of the nest. This little one has become used to seeing us and will let us come quite close. I was amazed at how both parents stuck close by and fed their little brood. Won't be long before they all abandon the nest and I can knock it down and for the last time clean the GIANT pile of droppings we have had for a welcome mat.

Girls gotta have fun

Some days a girl just has to be silly. I guess today was one of those days . Grace's bestie , Kayla, has been at our place for a few days.
Today we met a friend of ours for lunch and a movie. Afterwards I had some shopping to do and we went to Target. I was almost finished shopping when I got a call from Kayla asking where I was, she and Grace were on their way to meet me. Well, I heard them yelling for me as they were coming my way.
Those crazy girls were wearing some really cool helmets and Kayla was on a cute little skateboard being flung around by Grace who was speeding down the aisle. Luckily there weren't very many other shoppers and as far as I know they didn't bowl anyone over on their flight through the store. Who knows what tomorrow will bring :)

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:)