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.

Rob

So I know that no one probably reads this blog anymore because let's face it, I am too dang busy!  I promise that I will TRY to write more often!   So life around here the last 2 and half years, hasn't been very good.  It's been a lot to handle and I think that we have done the best we can with what we've had thrown at us.  And sometimes, I literally feel like I have been thrown under a bus.  We planned on things going smoothly with Rylee and staying away from AFCH for 6 months.  That's been our goal.  That was our plan.  I was raised and lived by a plan.  I heard repeatedly throughout my youth, "plans DON'T change!"  The day I had Weston, I completely ignored my body SCREAMING at me that I was in labor and my coworker said, "I think you're in labor" to which I replied, it's to early, it's not the plan.  The last thing she said to me before I left that day was "just tell God your plan."  On the contrary of what my youth was centered around, plans DO change.  I didn't plan for my life to be like it is today.  Quite the opposite actually.  I just celebrated my 10th year at Clare Bank.  Very awesome.  My boss is Deb.  She has been my boss for the last 10 years.  A few years ago she became my Dad's girlfriend.  A year after they had been dating, I had to call my boss Deb and tell her that an employee at one of branch bank's stole.  She didn't question me, she handled it.  4 days later, my dad's girlfriend Deb got a call at work (while she was being my boss Deb) that her son, Rob, fell.  He feel off the roof of a 2 story home that the construction company he worked for was building.  4 days earlier, I got a huge life changing lesson!  4 days after that, Rob had a life change.  His spinal cord was completely severed.  He was paralyzed from the belly button down.  On the days that I think my life sucks, I think about Rob.  He took the news of life in a wheelchair like it was no big deal.  Just a bump in the road!  Now, jump forward to today.  Last September, my dad's girlfriend Deb became my dad's wife Deb.  That night I watch Deb sit on Rob's lap and dance.  In July, it will be 3 years since his accident.  A couple weeks ago, he reached his 100th consecutive day in the hospital.  He's battling the mother of all pressure sores right now.  He has been dealing with all of this since Thanksgiving, I believe! I am not writing this post for your sympathy towards him because I am sure he wouldn't want it.  He's incredible by the way.  Rob is one of those people you HAVE to meet in your life.  Like write Rob Weigel down on your bucket list!  He really is that AWESOME!  He's at the St. Mary's hospital in Rochester, MN.  Just down the street from the Mayo Clinic.  It's the hospital that presidents go to.  It's that awesome!  My stepmom Deb being my boss Deb today, told me about a paralyzed man who had an electrical device implanted in his spine and now he can move his toes.  And get this, his name is Rob.  Coincidence?  I think NOT!  Maybe it's fate that it worked for that Rob now make it work for our Rob.  He has such a long road ahead of him already.  He's going to have surgery again, hopefully soon that will be broke up in 3 parts, it's that huge to remove the rods in his spine, fix what's going on in there and piece him back together.  Rob may most likely never walk again but that doesn't mean that we stop praying.

May flowers

We misplaced our cord to upload photos from our camera so I don't have any pics.  We have some good ones that I love too.  Soon I promise!

What happened to this month?  What happened to April?  We spent a lot of April at the hospital or doctors office.  Hopefully that won't be the case for a while!

Here's some updates on what's been happening with us the last monthish?!

ME:
I have been having terrible migraines AGAIN!!  It most like stress contributing to these.  Dr. C says I can't blame them solely on stress but it definitely contributes.  Migraines, in case you have never had the chance to experience one, is an out of body experience!  They're that bad.  So bad you wish yourself out of your body.  I have had plenty of them before but they intensified lately and started playing with my vision and stomach.  So I now have some meds and if those don't work than we'll take a different approach.  They've been running my life lately so that is all that I have.

Kristopher:
He's even less exciting than I am.  Other than a little case of the flu he's been just doing the same old same old.  Which will stay that way as he didn't get the job at John Deere.  He's pretty bummed about it but he also has a stable job now and John Deere has a reputation for hiring a bunch of people and then laying them off shortly after.  So it just wasn't meant to be.

Weston aka "Weston Bobby":
He's growing into quite the little man.  He worms his way into mischief.  Literally, he does the worm.  He can't quite get the crawling concept down and he completely content with the worm.  He seen Dr. C on Thursday as well and got a perfect report.  He is 18 pounds, 14 oz, 28.25 inches long, and has a 17" head circumference.  His head circumference and weight are in the 25th percentile while his length is in the 50th percentile.  He currently wears size 3 diapers and size 6 to 9 month clothes.  He can't quite sit by himself yet.  We are to push him into that and taking steps while we hold him up.  He eats like a horse.  He loves his milk but also likes his stage 3 baby foods and we have even given him table foods.   He absolutely adores his big brother and big sister.  Troy is about the only one who can get him to laugh out loud by doing some of the weirdest things.  Overall, he's a happy, healthy 9 month old little boy.

Rylee:
She may have had a rough start in April but she's been doing fairly well since.  She went almost a month without a seizure.  Then Thursday morning she had one or so we think.  We're not really sure, which is common.  She had a sleep study on May 1st.  The nurse that called me with the results said "Rylee failed with flying colors."  We expected her to say that.  Now she has to go to the ENT doctor for a possible tonsillectomy with adenoids.  Then either after that appointment or if surgery is needed, than after surgery, she will have to go back to Pulmonary.  Dr. S said that he thought he tonsils looked fine.  Dr. C thinks that removing her adenoids will be good since she is constantly congested and has a running nose.  Either way I think that CPAP is inevitable.  She will meet with the ENT doctor on May 24th at the children's hospital.  I thought we were trying to not go there so much, apparently NOT yet.  On the good side, she is walking a lot more lately.  She is also talking more.  Her new words are "Carmen", "Jalyn", "OY (Troy)" "JVKJEIOAJH Bobby (Weston Bobby)" "ME" "MOM" or "MA" and she will repeat whatever we say to her.  She is becoming increasingly interested in potty things.

Troy:
He says some of the funniest things!  He is constantly asking us "What does that word mean?"  He always needs to figure out everything.  He also ALWAYS disagrees and argues with us.  If we tell him to do something his reply is always "UH HUH" which his little sister has started mocking.  For example, today we were talking about eye color.  We told him he has brown eyes and Rylee has blue eyes.  He replied "UH HUH, I don't want brown eyes, I want blue eyes."  Kris was naming off all the awesome people who have brown eyes "Dad has brown eyes, Weston has brown eyes, Grandma has brown eyes."  Now for the rest of the day Troy has been talking about going to Grandma's house to see her brown eyes.  I even told him, no we're not going to Grandma's today and he said "DON'T SAY THAT WORD MOM!"  We found out how much we have to watch what we say.  The other day in the car he said clear as day "What the hell is that robot doing?"  Opps!  Trying to break that one.  After a stern scolding, he hasn't said it since.  He wants to go to school and tells me repeatedly so.  He is such a great little man! 

Personal Vendetta? Voodoo? Cursed?

I have to say that in the last week, those in the title of this post have crossed my mind a MILLION times.  Needless to say the last week has been rough on us.  More than rough and more than the last week, more the last 2 weeks.  To make the story stories short, this has been the past 13 days....

Tuesday, April 5 - ER trip to UW for possible shunt malfunction and possible seizures that turned into an overnight stay for observation. Conclusion: Not much but high white blood cells.
Friday, April 8 - Rylee showed Dr. Connolly her sick side, didn't even give him a smile.  I think it scared the dickens out of him.  He kept saying, "I'm sorry, something is wrong but I don't know what."
Tuesday, April 12 - Rylee had a seizure at home.
Wednesday, April 13 - Rylee's neurosurgeon wanted to her in Madison, right away.  So we packed up the car and rushed up there.  We only made it to Mt. Horeb before the car DIED!  It quit.  NO JOKE!  After a tow and a ride to the Children's hospital from my godsend, Aunt Lisa, we made it, almost 2 hours late! Oh well.
Friday, April 15 - After 2 days, 36 hours on a video EEG, we got the word we could go home.  I washed Rylee's hair and while I was cleaning up the shower, she threw my cell phone in it and killed it.  Kris and the boys, who had been bounced between Grandma and Grandpa Klauer and daddy, came to get us.  Since Wednesday, Weston had been very irritable, crabby and had the start of a rash.  Maybe he just missed his mommy right? NOPE!!
Saturday, April 16 - Daddy took a test at John Deere, hoping for a new job, great benefits and FIRST shift!! (PRAY FOR THIS!!) When daddy got home, I took Weston to Urgent Care.  The doctor walked in and looked at Weston's face and said "WOW, I haven't seen this in a VERY LONG TIME! I think he might have measles."  After a look in his mouth and not finding any Koplik's spot, he said it's a viral rash and double ear infection and sent us home with an antibiotic. 
Monday, April 18 - Weston's rash changed in the way that it looked.  The measles thing didn't sit well with me, so I took him to the clinic.   Dr. C was out for the day, Dr. White was booked, all the women physicians are pregnant so we got newbie Dr. Tuthill.  He looked at him, grabbed a mask and a masked Dr. White who said "Lots of viruses mimic the measles, but he is showing almost every sign of the actual measles.  We have to treat with the Measles."  So Grant County was called and Lafayette County Health Department has checked in with us twice. 

I'll be honest, I have had a few pity parties but not to often.  I have before asked why all of this happens to my child or to me.  But seriously, the 6 days have been loaded of bad luck or whatever you want to call this.  And I find myself asking, WHY US?  Why does Rylee have to have some many things stacked against and now seizures too...WHY?  Why does Weston, a baby, have to have Measles....WHY?  Why does Troy have to be bounced around all the time that he is constantly telling me he misses me and never wants to leave home anymore...WHY?  Why do Kris and I have to sit back and watch our children go through test after test and shed tear after tear...WHY?

I know life is not fair but this is just NOT fair for any of us.  I don't understand what is going on here. I don't know what we ever did to deserve this stuff that has been thrown at us.   Until today, I have handled all of this lately.  With as much ease as I could.  I haven't shed a tear...Until today.  Today, I cried my whole way home.  Alone in the car, I cried.  I cried for my kids and husband.  I cried about our life because we just can't catch a break.  I feel as though I've reached the top of what I am capable of handling but I know through all of this that it could be a lot worse.  And for that, I am lucky.  I am lucky to have a great husband and father of my children.  And I am really lucky to have my children.  I am lucky to have Rylee today.  I am lucky to have Troy to put humor into our day.  I am lucky to get those looks from Weston like he absolutely adores me.  I may have a whole heck of alot of bad luck but I still my family and for that I am grateful.

Rylee's expensive head

Rylee's $500k head isn't quite sure if wants that shunt in there or not.  Her head circumference increased a centimeter in 12 days.  No alarms went off because she wasn't showing any signs of a malfunctioning shunt but typical Rylee doesn't show signs until its really bad.  Monday night I noticed her holding her head and rubbing her shunt.  Then noticed her staring off into space, sometimes her mouth was making a chewing motion.  So I called the UW Neurosurgery and spoke with a nurse who said to go to the ER.  My in-laws took the boys for us and my sister joined me on the trip to Madison.  Once we got to the ER, Rylee was schmoozing with the doctors and nurses.  So we pretty much thought that we had wasted a trip up until they got the MRI quick brain scan results which showed her ventricles were slightly enlarged.  They admitted her for overnight observation.  She's been fine the entire time we have been up here other than holding and rubbing her head a few times.  Right now, Kris and Rylee are lounging in a recliner watching Mickey Mouse Clubhouse and I am on the couch writing to all you fine people.  We're hoping and praying that everything is peachy keen, no seizures and no shunt revision and we can go home soon.  The neuro residents came in about 2 hours ago and we haven't heard anything since so I have no idea what is going on.

We're definitely ready to get out this place.  I haven't ate in nearly 24 hours and Rylee hasn't ate since the animal crackers and applesauce I feed her for dinner last night at 10 pm (because she has been NPO since midnight).  We're all ready to break out and go eat.  Please pray that these doctors come visit us soon and get us out of here!