Handicapable!

Over at Kelly's Korner, she's having a Show Us Your Life.  This week is Special Needs Families.  I think it's kind of neat.  I believe that sometime "Special needs" is socially viewed as a negative thing.  I personally have never thought that way, in my life.  In fact until High school, I always thought I would be a special needs teacher.  Even in high school, I volunteered at Badger Camp.

For those coming over from Kelly's Korner, let me introduce you to the most wonderful 2 year old! 

  She was born at 30 weeks with obvious facial deformities.  She has a Chromosomal 6 deletion q25.1-q25.2.  It's an extremely small deletion but one that has filled out world with many uncertainties.  Rylee has met all of her milestones, just at her own pace.  She rolled at 11 months, sat at 15 months, crawled at 19 months, walked at 27 months.  Cognitively, she is able to hold and use a pencil or crayon, use eating utensils, play with most toys, turn pages in a book, clap, wave and blow kisses.  From a speech stand point, she can't speak much.  She will mimic more than anything and she can sign a few words.  She becomes frustrated and agitated easily when she is trying to communicate with us because we simply can not understand what she is trying to convey to us. She is very far behind the growth curve.  She is currently 18 pounds, 6 oz and 29 inches long.  Her health is relatively well right now.  She suffers from Hydrocephalus so she has  VP shunt to help drain her excess CSF, Chronic Kidney, lung and heart diseases, Heart murmur, ROP, Failure to thrive, hypotonia, possible growth hormone deficiency, sleep apnea, global developmental delays and new to her long list of medical imperfections are Seizures.

Rylee is not perfect to the average person.  She has lots of medical issues, continuous physical, occupational and speech therapies and a never ending list of doctors visits.  But to me, she is just who she was meant to be.  She's special!   It breaks my heart that nurses, blood pressure cuffs, iv's and those metal hospital cribs are everyday things to her.  There are many many times that I get frustrated and overwhelmed by all the information and schedules but I wouldn't change it for a second.  I love that little girl more than life itself.  I just can't imagine her any other way.  I read this poem a few months ago and it really touched my heart! If you are a parent of a special needs child, always remember that God sends children with special needs to special parents because he knows that they will be well cared for.

HEAVEN'S VERY SPECIAL CHILD
by Edna Massimilla 
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”

Updates!

Rylee had her adenoids out on Tuesday. She had a great GI visit in the morning. Don't have to go back for roughly 3 months provided that she is followed monthly with Dr. C!  AMEN!  Surgery was scheduled for 3 but didn't get going until 3:30.  At 4, Dr Kille came in and said that there wasn't any fluid behind the drums in her ears so he didn't do the tubes but her adenoids were very large so he removed them as planned.  At 4:30 I was taken back to recovery to see her.  She was still very sleepy and snoring to the high heavens!  She did eventually wake up, started tracking and recognized me and drank some juice.  Shortly after she sat up and drank some juice, the Rylee we love so much left her eyes and she started just staring.  I, as I have seen her do this a few times before, was all over that.  The nurse also got right up to her and seen it too, though he would still say he wasn't sure she had a seizure (UMM, yes she did!)  A half an hour later, it happened again.  Then an hour after that, it happened again.  She had a flat lining moment that was a lot of scary.  She slept the night away.  (Seizures tend to wipe her off the face of the earth!)  We were released at 11 the next day.  She's been relatively fine.  Super runny nose and snoring but that takes time for the swelling. 

My step brother Rob had his surgery.  It was a long one!  He was in surgery for 12 and half hours, away from his mom and family for much more than that.  He has an incision from his next to the base of his back.  He woke from surgery Tuesday night with limited feeling and movement in his right arm/hand.  As of Thursday night, he was able to open a milk carton with the use of both hands.  Hopefully this is just swelling and he will regain all use of the arm and hand.  He will go back into surgery in 7 to 10 days, depending on his arm and possible pressure sore on his hip from surgery!  Pray for him to get this next phase of surgery over with and starts his way towards recovery. 

That's all I got!

This week

Rylee is "going under" again!!  Tuesday she is having her adenoids removed and possibly having some tubes placed.  It's minor and we've been through this exact procedure with Troy.  This time, it's so much more risky because of Rylee's medical imperfections.  She had a visit with Dr. C who practically clicked his heals that she was having this done.  Seriously, he walked in the room and started fist pumping!  **Random tidbit of info that I find completely odd, Dr. C's on Facebook! No joke! My coworker told me this.  I just find it strange.  It would be much much more strange if my dad got into Facebook.  Now that's just funny!**  He "cleared" her for surgery.  Migraine wise for me: I've been having more and more migraines that have dramatically increased in intensity, especially last week. He prescribed me some meds to take daily at bedtime (which are still sitting at the pharmacy) and gave me a sample of some meds to which he said "if they make you feel like shit, quit taking them."  **My children's doctor has a nickname for me and cusses when he's talking about my medication, are we FB friend worthy, can't decide!**  I also have a lump on my neck.  It's a swollen lymph node.  Since my paternal grandmother died of lymphoma, it has me concerned. As long as it goes away, I should be fine!   Back to Tuesday, these doctors, I swear, must not have children of their own!  Rylee isn't scheduled for surgery until 2:30 PM!  WTF!  She can't eat or have milk after midnight and she's not going to understand why I won't feed her.  THEN, take her freaking adenoids out so she feels so rotten that she wont want to eat when she finally can.  1 day without food and she'll be blown away by 1 mph wind.  She doesn't have the extra weight to go without food for half of a day.  And its not like she'll get a ton of calories in jello or popsicles.  I guess I'll have to bring her some PediaSure (she hates the hospital's Pediasure, it's the feeding tube stuff and must taste awful!)  For some reason, I am completely nervous about this surgery.  No clue why, it is not like the shunt revisions or anything but pretty standard.  She is doing the outpatient short stay so she's spending the night.  I think that is why they're not doing surgery until 2:30 because they want enough time to discharge her in the morning.  Outpatient short stay pretty much means a stay that is 23 hours or less.  I have to be home by 3 on Wednesday to see my handsome boys so they better not keep us too long. Pray for her, anesthesia is always a tricky thing with her, pray for the team working on her, pray the I have this uneasiness calmed.  Tuesday is also the day that my step brother Rob is going into his first of 3 surgeries to repair his back.  Rylee's surgery will be 30 to 45 minutes.  Rob's will be 12 hours!  This is an extremely risky surgery since there are nerves everywhere and crazy stuff going on in there.  He will have to lay completely still for the week following and then back into surgery again.  He'll be in a body cast.  This surgery, I believe, will be done through his back and the next one through his front/stomach and pelvic area.  There will be 3 of the best doctors in the world working on him.  He's at Mayo, the best hospital!  Please pray for Rob's surgery, pray for those doctors and team that they steady the entire 12 hours and pray for Rob the following week because he's going to need them.

Last week, my migraines picked up in frequency and intensity right along with my stress level.  Thursday my stress level peaked.  I literally felt it at one point in the day.  Last week was bad!  Tuesday ended badly at work.  I made a couple of errors at work that cost my coworker to stay at work 40 minutes late at work.  In the end, I fixed it, all the money, down the penny, was accounted for.  I seen it like spilled milk, you're out the milk, she was out her 40 minutes.  Mistakes happen right?  I felt so awful, she was clearly upset and it was my fault she was there the extra 40 minutes.  I went home Tuesday and never in my wildest dreams did I predict what would happen Wednesday.  HOLY SHIT!  I wasn't picked on too bad when I was a kid, nothing that was life changing or anything, so when all these kids starting to commit suicide because of bullying I never understood, it always gets better right?!  I now understand how bad it hurts!  Not to the extreme of those kids but it sure doesn't feel good.  I have never been bad mouthed so bad in my life, at least what I know of anyway.  And it wasn't just that one co worker, that's what floored me.  Thursday, I got papers tossed around me, I got doors slammed around me, I still got the silent treatment.  Friday was my 5 year anniversary and I spent those precious 10 minutes I got with my husband the entire day, whining how bad I didn't want to go to work.  There are only 2 other people in my life that have been able to make this terrible and above it all, I still love them.  I seen it as she was out 40 minutes, she practically tried to get me fired.  A select few of my coworkers treated me like complete garbage.  I care about every single one of my coworkers and seen them as friends.  I spent my lunch hour with my sister on Friday, practically bawling in her office.  I didn't deserve that.  No one's time is more precious than mine and mine is no more precious than anyone else's.  What followed those 40 minutes has forever changed me.  Complete life lesson.  Those 40 minutes have now turned into 3 days of hell!  Kris and I had a big long chat Saturday night about this.  I don't have the best backbone, I despise confrontation, and I wear my emotions on my shelve.  I made a vow to Kris that I will never let anyone make me feel so rotten.  I am going to try till it kills me to let those hurtful things roll.  I will pool that frustration and take it out in a healthy way elsewhere.  I will keep my emotions to myself.  I will no longer allow myself to cry where I am vulnerable.  That's my vow and I hate that I may come off as heartless and emotionless and lonely, but to protect myself and my those I hold dearest to me, that's what's going to happen.  The BSing at work is completely out of control and I will no longer be participating (which is how it should be).  I will give 110% effort at work, but when I walk out of those doors, it stays there.  Just like when I step foot in the parking lot at work my husband, darling kids and family and friends stay tucked in my heart until I drive away from there at the end of the day.  That is my vow and I am going to focus way too much energy in that! I am still going to care about my coworkers, I'll just let them know it after work! Talk of the happenings at Clare Bank ends NOW!

Now, I have to hit the hay and prepare myself for surgery on Tuesday.