Sometimes you just need a good cry!

****Post written on January 31, 2012 that was never posted! Opps!****

I wanted to update this bloggy thing and anyone who reads it, about Weston's color changing feet.  All of the tests have come back normal.  The doc thinks it could be Raynaud's disease.  It doesn't appear that he has any rheumatic disease which rules out Raynaud's Syndrome.  I guess it's not much to worry about.  There is no cure.  There is no treatment.  Just keep the poor kid bundled up!  He's been doing fairly well.  He is sleeping better at night, most nights!

The pending big birthday of Rylee's has been keeping up busy!  When a child who receives Birth to 3 services turns 3, they age out of the program.  Rylee is significantly delayed in a many areas and is definitely in need of continued therapy.  So we had to turn to school.  She went to all of the testing for OT, PT, speech and early childhood.  Most of them overlapped.  It seemed that for 3 weeks straight we were running her to school or someone was coming to our house to visit her or us.  On January 25th, we had a meeting with the school and a ton of others to discuss the results of all the testing and makes some decisions of what to do next.  So my dad and Kris' mom came with to support me (Kristopher had to work and couldn't come) along with Tammy, our Birth to 3 program coordinator, to meet with the school psychologist, school speech therapist, OT from Cesa, PT from Cesa, the Early Childhood coordinator and the Early Childhood speech.  It was a full table.  There was lots of facts thrown around.  I thought I was ready to hear what they had to say.  I know, and always have, that Rylee is "special".  She has severe delays and there is no denying that.  But I will never get used to hearing people that I had just meet 5 minutes earlier tell me how far behind she is.  It was rough.  I made it through.  And in the end, I ended up signing consent for Rylee to go to Early Childhood 4 days a week for 3 hours a day and 1 - 30 minute home visit per month.  The school is in Hazel Green so we have to transport her there and back.  I am honestly not very fond of the fact that she will be so far from either Kris or I.  But it was what had to be done.  I really liked the Early Childhood teacher and think it was what was best for Rylee because ultimately our goal for her is to live the best life we can give her. I held strong through the whole she's at the 1%, "very poor", "below average", definite need for services, 20 pages of goals without a single tear.  Once I got in my car to go and get the boys, I bawled.  I cried all the way to Platteville to the daycare.  I can't say that I felt better but sometimes you just need a good cry!


4 days after that meeting, Rylee turned 3!  She didn't really want to I don't think.  She didn't want presents or us to sing to her or a card that Grandma had sent.  She did however, want cake! And yesterday, our very new 3 year old went to her first day of school.  She had a few tears when the teacher asked her to stop playing to join in circle time but otherwise it went alright.  Today, she had a suspected seizure.  I am not convinced that it was or wasn't.  She hasn't had one in 8 months.  She was probably daydreaming or just spacing. We'll take it more seriously if it happens again.




Next month is a very busy one for us.

Feb 6 Uncle Scott's Birthday
Feb 7 Weston has his pre-op eye visits at UW Station clinic
Feb 9 Rylee has her 3 year well child visit and Weston has his 18 month well child visit
Feb 14 Rylee has a visit with AFCH Audiology and her ENT doc to follow up on her hearing issues
Feb 19 Troy and Rylee's birthday parties!
Feb 20 Weston has eye surgery at AFCH
Feb 23 Rylee has a GI visit, MRI and Neurosurgery visit at AFCH
Feb 24 Uncle Craig's birthday
Feb 25 Aunt Carmen's birthday
Feb 27 Rylee visits with Urology and Neurology at AFCH and UW

Lots and Lots of trips to Madison.  I can't say that I am looking forward to it, but we need some straight eyes and check ups to makes sure everything is functioning properly.  Sorry if I am absent for the entire month of February. 

I am working on reading 50 books in 2012.  I am currently on book #6 so since it is extremely quiet in my house, I am going to take advantage and read a little before Daddy gets home from work!  Good night all!

Hello 2012!

Hi All!  I took an un-intentional blogging hiatus.  I have, as always, been busy...being a mom...since my last post on October 10th!  SORRY!  Lots has happened around our household like...Halloween, Thanksgiving, Christmas, 4th Birthday, New Years....and a few doctors visits.  I say few and I sincerely mean there were only a few!  Rylee hasn't been to the doctor for herself for almost a month!  KNOCK ON WOOD!!!!!!

So here's a quick (I hope) recap of the last almost 3 months....
I don't Weston was quite walking yet in my last post, but he is now.  It's fun.  He's progressing well.  We seen the eye doctor about his crossing eyes on October 1 and we got him some glasses.  It was an honest to God battle to get him to keep those puppies on.  December 10th we went back to the eye doctor.  The glasses, surprise surprise, didn't work which the eye doctor didn't really think they would.  SO...February 20th, we are headed to UW-AFCH for an outpatient surgery to uncross those gorgeous eyes.  Hopefully, he does well with this.  I actually took him up to meet and consult with the eye doctor on December 22.  It just so happened that the night before we went up, he woke me up right before Daddy came home from work and the poor babe was covered in huge hives.  So before our eye appt in Madison, we rushed him in to the clinic at home.  They thought it was probably just a virus.  Holy cow, I found out it definitely was a virus when we were on our way to Madison and he completely blew out his diaper with diarrhea.  Thank goodness we packed extra clothes.  At the appt, which took 4 and half hours (about 99% was waiting!), he went through all the wipes and diapers and clothes I had.  Poor boy!  The diarrhea is still around today.  The cause...teething and virus.  Christmas Day night we were getting ready to head over to my sister's house for Christmas there and while getting him dressed, Daddy noticed his feet and hands were very purple.  We still don't have a diagnosis for it yet.  Yesterday, we did an echocardiogram which came back normal.  When I got home tonight, there was a message on the machine from the doctors office to give them a call for more test results.  Hopefully we can figure it out.  It's the weirdest thing really.  His feet and hands will be pink one moment, purple the next and back to pink as fast as it took you to read this.  He's reverted back to have restless nights.  Monday night, Daddy slept with him in the recliner and last night he spun circles in our bed with us.  Right now, Weston has been our biggest concern.

Rylee has been doing fantastic!  She's been the healthiest one so far this winter.  I hope that statement doesn't come back to bite me.  I haven't spoken that out loud with the fear that she'll end up terribly sick!  She thoroughly enjoyed Christmas.  She got a dollhouse from Santa.  She loves it!  She loves it so much sometimes she wakes at wee hours of the morning to play with it for a little while before going back to bed.  Makes mommy and Daddy wish there wasn't a dollhouse...between these little play sessions and all the little pieces that are scattered thoroughout our house, I don't know which worse!  With her 3rd birthday just around the corner, Birth to 3 is ending.  Friday is her very last day of OT.  PT ends on the 19th and Speech ends on the 27th.  We are sad to see these ladies leave and terrified as to what is next.  I signed the consent form for the testing for early childhood last week.  The school speech teacher is extremely nice and gave a very thorough tour of Benton school.  She even took us to the library and let Rylee pick out a couple books to take home.  I have a sneaking feeling that Rylee will end up at Southwestern since Benton doesn't have an early childhood program.  I would prefer that she went to Platteville for Early childhood because it's a better school for it.  They don't open enroll for children with disabilities from what I understand so that;s not an option.  The biggest fear that I have with her going to Southwestern is that Daddy is 10-15 minutes away and I am 40 minutes away so if something happened, a seizure, vomit, knock of the noggin...we can't be there right away if she was at Benton school, which we can see from our house or in Platteville which is down the street from my job.  It worries me.  We also don't plan to live in a teeny tiny money pit forever and will relocate to Platteville.  Right now, it's out of our hands, we just have to roll with it I guess but for the record, I am not too thrilled about it!

Troy is ball of fun.  Up until a week ago, we had the biggest problem of him wetting his pants.  He pretty much started wetting his pants, once he started school.  "School" is only for 2 hours every Friday.  So it's not much of school and he loves it so I have been having a hard time thinking that school is the reason for wetting of the pants, but everything kind of points to that as a major change.  We tried everything, ignoring it, babying it, getting mad about it, punishing for it, making him help us clean it up...nothing worked.  For Christmas last year, we were gifted Elf on the shelf.  This year we broke out Elf on the shelf, which Troy names Thomas, and he hung around our house until Christmas eve when Santa came and took him back to the North Pole with him.  Santa sent Troy (and Weston and Rylee) a video about what Thomas had reported to him each night.  Santa told Troy that he needed to work better on making it to the potty in time.  That floored Troy, he didn't realize Thomas was telling Santa that.  We also made a big deal about turning 4.  That turning 4 meant that he would be very big boy because he would get to go to school, have more responsibilities...that when your 4 you no longer pee your pants.  I don't know if it was the 4 thing or Santa thing or 2 week break from School but he's hasn't had an accident since Christmas.  Friday, he goes back to school, so I guess we'll know if it is school, if he starts having accidents again.  Fingers crossed that phase  it behind us.  He's an exceptionally little boy.  He loves numbers (he gets that from me!) and likes to do circumstancial math...like there are 4 people and 4 cookies, how many cookies does each person get...1!  He loves that kind of stuff.  He loves being 4.  A month ago he told me that he didn't want to be 4, he wanted to be 3 forever.  4 warmed up on him and now he's an adorable 4 year old.

Me and Kristopher have been pulling our hair out with 3 kids, but aren't balled yet!  We don't get to spend very much time with each other so when we do, it's extra special. Now that the holidays are over, it's back to seeing each other on pretty much only Sundays. There are many nights, like tonight, when I need to keep myself busy otherwise the loneliness creeps in and I miss him terribly. I talk to adults all day and kids all night, but most days I long to have a conversation that doesn't involve money and interest rates or juice boxes and poop.   I long for a joke or laugh or a snuggle with someone who is bigger than me.

Here are a few pictures of life at our house in the last few months (sorry most of them are from my phone...)

Kris and I with our godson, Gabriel

Weston's first hair cut!

Halloween 2011

 Dr. Troy Klauer, MD

Rylee Klauer, RN

Patient Weston R Klauer DOB 8/2/2010

Christmas Eve, in PJs ready for the lights at Murphy Park

Happy 4th Birthday!

Until next time...
Mary

HOLY MOLY! October?

Holy Moly, ya'll, where the heck did September go?  I know I constantly say this but time is really getting away from me.  We have been doing great.  Last Friday, Troy had his first day of school.  Can you believe it...school? Neither can I.  We walked him into his classroom and he hugged his cousin, Isabelle, and off they went.  Kris was practically pulling me out of the room.  I, very close, but didn't cry.  I can't believe his already going off to school.  This Friday is show and tell.  He told Dad that he wanted to take George his stuffed monkey.  He told me tonight that he wants to take Rylee as his show and tell.  Rylee might just fit in his backpack too and boy would she love to go to school.   She will start "school" in January or early February since she is turning 3.  She will have her speech therapy at school.  That's right...in January we will be down to 1 kind of therapy...speech.  My dad, Grandpa Harley or to Troy "Grandpa with the bike", says that once Rylee gets her vowels and consonants all figured out, we are all in trouble.  This girl talks and talks and talks, but we have no clue what she is actually saying to us. And you'll never, never, NEVER, find her without a book.  She LOVES books.  She even sleeps with them.  Rylee has been in good health.  The stinker is still being a picky little thing and is still weighing in at 19 lbs.  She's not gaining anything, but the key is she's not losing any anymore.  I was scared that earlier this summer we were going to need a feeding tube (we even made a rushed trip to AFCH for a possible emergency tube placement...scary stuff), now I am not convinced  it's won't be brought up again but just not right now.  I know Dr. C is pulling for NO feeding tube so as long as I have him on my side, we're doing good.  Weston still isn't walking walking.  Saturday night he decided to just take off and walk.  It was quite awesome to see really but he only does that when he wants too.  He walks around everything and will walk holding on as long he can to where he wants to go.  Lately it hasn't been Rylee causing us the health issues, it's Weston.  Poor little, for lack of a better word, turd.  He is literally a crawling turd.  He is full of #2 and gas.  He has to go see Dr. Alison on Wednesday but he also gets to take a trip with Rylee to see Dr. Cathy, our GI doc, at AFCH.  Dr. Alison said that the most likely cause of all this is an intolerance.  All these GI issues with Weston started when we transitioned him from formula to whole milk.  That kid loves his milk, it's going to be hard if Dr. Cathy says he can't have dairy anymore.  He's experiencing a lot of discomfort with all of this.  #2ing time is absolutely heart breaking.  No baby should ever have to go through this and neither should their momma.  Troy, Rylee and Weston had eye doctor visits (at the same time!) on the 1st (yes, a saturday..even better). Troy was being seen for a follow up of his turning eyes, Rylee for a follow up of her ROP and Weston because his eyes have started turning in like Troy's.  Thank god my step mom Deb offered to come with and help out.  She was a god send!  There is no way I could've handled that on my own.  Weston was particularly bothered with the dialation of his eyes.  He was ticked by the end.  Dr. Dailey didn't get a wonderful reading on him but none the less Weston does need glasses.  He has the exact thing as Troy.  His eyes turn in due to being far sighted.  So for right now, Weston, will have glasses.  Troy ended up leaving the appointment with a great big box of eye patches and instructions of wearing it everyday for 4 consecutive awake hours.  Rylee has inherited my astigmatisms.  Each eye has them.  I think Dr. Dailey felt sorry for me at this point because we are going to hold off on glasses for her for 6 months.  Her eyes were an indication of her chromosomal abnormality so it's no surprise really that her eyes aren't shaped right.  Plus, I have them each eye also.  It sucks.  Contacts are doable most of the time but not always.  I ordered Weston the best glasses that I thought would be the best to keep on him, we'll see.  I am quite nervous.  I guarantee that in 6 months, we will be ordering Rylee's glasses and another pair for Weston and Troy. (Troy's are in awful shape!).  Other than the GI issues and the eye issues, our life is about as good as it gets.  We are happy.  I can honestly say this is probably the most relaxed I have felt in almost 3 years.  Yesterday, we went up to UW Arboretum and my sister in law, Katrina, took photos of our family (see the right side for new photos!).  They turned out amazing.  It was fun and we had the most perfect tree! Enjoy!  

Life as we know it...

Been the usual crazy around here lately.  School starts tomorrow, though having kids ages 1, 2 and 3...none of them are in school yet.  Troy will go to St Rose's Little Lambs program.  That starts at the end of the month.  He's excited!  We got him a Buzz Lightyear backpack and a bunch of school supplies. 

Last weekend, all 3 of the kids had an overnight with Grandpa Harley and Grandma Deb.  Kristopher and  I went to a wedding reception in Prairie and before we left town, we stopped at Culver's to share a banana split for old times sake!  We both slept like rocks that night.  I don't think I moved for 9 straight hours!  The kids had an amazing time too!

A couple weekends ago was a busy one for us.  We had my niece Lily's birthday party on Friday night.  On Saturday, I packed the kids up and took them to Lancaster for a family reunion for Kris's mom's family.  Then I took them to the Grant County fair to see the farm animals and all the cool stuff.  Troy desperately wanted to ride the rides but since I was the only adult with 3 kids, I told him they were scary and maybe next year he could ride them and then got him a sno-cone.  Then Sunday, as a family, we went to Cassville and took my in-laws boat out on the river.  That was fun!  Definitely going to do that again!  Next time, we're bringing a cooler full of snacks, sandwiches and drinks and a pail and shovel and stopping at a sandbar. 

Weston had a bought of the flu.  We think he may have had hand foot and mouth again.  He would chew his food but spit it out, crying.  So we assume that his throat hurt.  Unfortunately, hand and foot is virus that just has to run its coarse.  He's doing better now. 

Tonight, I took the kids grocery shopping with me.  Oh lord, that is an adventure in itself.  But what made it worse was that as I was hooking the kids into their carseats at the babysitter, I noticed Troy's shorts were wet and he smelled very strongly of urine.  He told me straight out that he had wet his pants and he was sorry so I told him no rides at the grocery store and he had sit in the cart the entire time.  He fussed about it a little but that was it.  I got the kids a popcorn chicken cup to eat as we were going through the store because we would get home when we usually sat down to eat.  This would at least tie them over until I had something made.  I think Troy ate 80% of the chicken.  I filled cups before we headed home.  Troy had 2 melt downs in the parking lot over his head hurting and was hysterically crying over something that I still not sure what it was.  About halfway home, he started crying in the backseat clutching his belly and started dry heaving.  I pulled over and calmed him down.  By the time we got home, he was asleep.  It's 6:30 at this point.  I opened the house and hopped in the car to get the kids out so they could start trickling inside while I carried in groceries.  Troy's lips were completely white.  I took him out and we went inside because he was really shaky.  He started crying about just wanting to go to his bed so I put him in bed, grabbed a bucket and told him to use that if he was going to throw up.  I went out to get the other kids and when I got back inside, he was in his room sobbing.  He threw up on his pillow, in the bucket, on his arm and on his bed.  He told me, he ate too much chicken.  It's now 2 hours later, he's been asleep for well over an hour (in Rylee's bed because his torn apart and in the washer!)  It's hot in the house and he's got the blankets pulled up to his chin.  Poor kid!

Rylee has been doing pretty good.  She lost a bunch of weight and now has gained it back.  The GI doc referred us to a food psychologist.  I don't know what we will get out of it, probably nothing, since Rylee can't tell us why she is a picky eater at times.  I am completely convinced that this is a behavior thing.  All kids at 2 or 3 go through this.  Rylee is no different in that part but she is in the aspect that she doesn't have any extra baby fat just laying around like other kids.  She's doing well though.  Quite the jibber jabber.  And she loves to sing.  I hope she as musically inclined as her dad!

Speaking of Dad, it's his birthday tomorrow.  He's going to be 26. Happy Birthday daddy!

My migraines are back!  I have been having more stress lately.  I trying to work through it.  My major stress is my mom.  I can control this and turn it into something positive rather than having my brain beat out through my toenails!  I have come a long way in the last month with my feelings towards my mom.  She's never been the best mom, never mother of the year or anything. She's had moments where I can say that I am glad that she was there with me.  Then there are moments, when she is completely out of sync with the real world.  Weston's 1st birthday party was planned, invites were sent out 2 weeks ahead of time.  Sawyer's 1st birthday party was the weekend before Weston's and mom made the 3 hour trek up to it.  She made the 45 minute trek 3 weeks later down to Lily's 1st birthday party, which is 10 minutes from where we live.  2 hours before Weston's party, mom called me to tell me that they "won't be able to make.  They have people to meet."  2 hours before the party, when I am running around like crazy putting everything together to take up to the park shelter and she dropped this on me.  I just hung up on her.  That or I would have said something childish and mean and would've regretted it later.  OK, fine she didn't come.  His actual birthday comes a few days later, she doesn't even call to acknowledge it.  A week after his actual birthday, she stomps into my job, throws a gift on my desk and stomps out.  She never said a cotton pickin' word to me.  Fine, whatever, be a child, I'll be the adult!  What really got to me, was when I pulled into Craig and Jen's driveway a week and half later, and she was there.  She went to Lily's 1st birthday party, which she should've, she's her grandma.  They even let off fireworks.  Not once, did she acknowledge me or my kids until Rylee walked up to her.  I did take Rylee away from her because she was drinking and on a counter height chair and I didn't want anything to happen to her $1,000,000 head! It's not fair to come to 2 of the birthdays and leave 1 out.  It breaks my heart to think that his own grandma didn't come to his first birthday.  I am so glad that he is 1 and didn't even realize she wasn't there.  I will never ever let her hurt one of my kids, ever!  She has let me down more in my life than been there for me.  I think the birthday party thing was the last straw of many.  The last chance of many.  Troy, Rylee and Weston have 2 set of grandparents that love them dearly, that they love fiercely.  Unfortunately, my mom is no longer welcome to share these joyful times and those not so joyful times.  I have made that decision.  It's completely her loss.  I have 3 amazing kids, that I will raise with as much positivity and goodness as I can.  I am so grateful that I have 2 awesomely wonderful sisters and an amazing mother-in-law and step-mom that I look up to, that I look to for guidance.  I hope she lives a great life.  I hope one day she'll straighten up, get rid of the booze and whatever else and seek a relationship with me and my family!

Pictures!

Daddy found the lost camera cord.  It was, of all places, in the diaper bag.  I guess it helps to clean that bugger out sometimes! 

We had the meeting with Rylee's therapists on the 5th.  It went awesome!  Couldn't have asked for a better meeting.  Currently, OT and PT each come once a month and Speech comes twice a month.  NOW, OT will visit once in November and once in January to do her final evaluation.  PT will come once in September, once in November and once in January to also do her final evaluation.  Speech will continue to come twice a month until the end of January.  January is when Rylee will turn 3 and is no longer eligible for the program.  It's bittersweet really.  We are going to definitely miss these ladies.  They have played a huge huge role in our lives for the last 2 years.  They are a big reason Rylee is doing so well now.  Rylee is doing great!

Her new goals are:
PT: *Kick a ball *Catch a ball * Jump using both legs
OT *Do a 12 piece small knob puzzle *Draw 1 complete circle *Properly use scissors
Speech: *Identify objects by name *Use 2 words phrases *Able to answer WH questions

These are attainable goals.  They are definitely things that we can incorporate into our everyday lives.  After January 29, 12 Rylee will start going to school to receive her Speech therapy.  As of right now, that looks to be it for future therapy.  She will of course need to keep building her strength physically but we have big hopes in taking her to gymnastics to help with that.  We also found out that she will most definitely be placed in school with her peers.  That to me is huge!  I never in my wildest dreams imagined that she would be with kids her same age.  As long as she is prospering and evolving, that is where our goal to keep her would be but we don't have a problem holding her back to Weston's class if she needs it.

Rylee has also taken an adversion to solid foods.  This is probably just a behavioral things.  A normal 2 year thing but Rylee isn't the normal 2 year old.  She doesn't have the normal 2 year old reserve of baby fat.  SO, we're really not sure what to do now.  She isn't eating and when she does, it's not much.  I am just sick over it.  She is literally withering right away from us.  Her main focus is on her milk or liquids and that is quite a pity since there is no caloric intake in those.  I guess maybe someone will call me tomorrow as a follow up from Friday?  I am really not sure.  FYI, She was 18 lbs on Friday, down 1 lb, 6 oz from July 18th.

Weston's actual birthday was rather uneventful.  We had cake and sang him happy birthday.  When daddy got home from work, he put the new 2 foot tall car toy thingy together and I'm pretty sure all 3 kids were glued to it the entire following day.

This weekend, me and the kids hung around home on Saturday while Kristopher worked.  Once Daddy got home, Weston and I climbed in the van and headed to the New Glarus area for 1st birthday party #3 (we have 1 more this week and 1 next month).  I had a great time visiting with my friends, Annie, Carolyn, Dana and Aaron while Weston played with his buddies, Jackson and Isaac C.  He was exhaustedly asleep before we got out of the driveway to head home.

 Today has been a "TLC the house" day.  Daddy worked on cleaning the garage while I worked on laundry, dishes, cooking and getting ready for the start of another week.  This kids were in and out all day, dragging in the flies with them. 

I think now I am going to curl up with my husband, who I haven't seen to much of lately, and watch The Glee Project.

 Hope you enjoyed the pictures!

Toodaloo ya'll!

Updates!

I have honestly tried to sit down and write like a dozen posts but have never finished any of them.  We're all doing well! 

Kristopher is back to working overtime on Saturdays.  The paychecks at the end of the week are nice but we miss him more than he probably knows. 

I am working hard but at times feel like I am hardly working, if that makes sense.  I just never see an end to the pile.  My fight with migraines continues except not as often.  Stress induces them big time!  I keep telling myself that I need to be doing something differently to reduce all the stress but haven't had much luck.  It seems that if I detour from our daily routine, I am socked with one.  This past weekend was hard but I made it through!

Troy is at the age of total meltdowns and total highs and there is no inbetween, just those.  He be extremely happy one minute and the next he's crying about something.  He's a great kid once you see beyond that.  His vocabulary is outstanding!  He's been potty trained for quite a while now and what a blessing that is.  We're hoping to have him start school this fall.  It's a program for 3 year olds at St. Rose called Little Lambs.  I had them add him to the list last year just not quite sure when he will start.  He's much great big helper.  He's also has a great big sassy mouth at times.  His famous line tonight was, "Please mom, give me another chance..."  That was chance number 126,436,212.  LOL!  Troy is a good 36 inches and 34 lbs.  He's tall and lean and quite mighty. 

Rylee is probably doing the best out of all of us for once!  She's walking and talking and has been seizure free for almost a month and a half.  She is great with her manners.  She points out body parts and sings.  She still has a version of her own language but we can pick up English words at times.  She still has to point at what she wants a lot of the time and that frustrates her that most of the time we have absolutely no idea what she is trying to tell us.  She is sensitive and it's easy to hurt her feelings.  She schmoozes her way into what she wants.  That seems to be the way it works most of the time.  She is 18 lbs, 6 oz and 29.5 inches.  She wears size 12 month clothes, only for the length, and size 2 shoes.  She is currently in a size 3 diaper.  She is small and disgustingly thin but just seems to have hit a snag in the weight gain.  (The only ones gaining any weight from this high calorie diet are Kristopher and I and we don't need it!)  She has an infectious laugh and copies everything that everyone says or does.  Troy is her best friend and if she wants his attention, she just hollers his name until he answers her.    Weston is her baby and she has taken to calling him "bubba" or "buddy" (we can't really figure out which one it is, it could quite possibly be she calls him both of those) and shakes her finger and says "no, no, no" if he is up to no good!  Her therapists are extremely happy with her progress.  She has met all her goals for PT and OT.  We are having the big meeting with the 3 therapists and program coordinator to re-assess her goals, give her new goals and talk about school this friday.  Once she turns 3 she is no longer eligible for their program anymore.  SO, she has to go to school to receive therapy.  I can't believe in 6 months she'll be in "school".

Weston is growing like a crazy weed.  He's doing great.  He's learned the art of throwing temper tantrums.  He's rather good at it if I do say so myself.  He will turn 1 tomorrow.  I can't believe it.  The year has flown right on by.  I find myself sometimes thinking that I hardly spent any time with him before he went to bed.  I've worked hard to try and change that. 

This past weekend we had his first birthday party.  It went well.  I was thrown for a loop 2 hours before the party started, which upset me miserably and tossed me into a migraine that I had to force myself through.  I am lucky that I had Kristopher to run home to pick up the things that I forgot about.  I put on my smile and by the end of the night was extremely exhausted.  We had our nephews, Isaac and Noah stay over for a sleep over after the party.  Noah so graciously woke everyone in the house at 4:45 on Sunday so we started our day then and didn't end it until 11 that night.  We all slept pretty good last night. 

I have lots of pictures to upload and someday we will find the camera cord to upload them from the camera.  Right now I am sorry, but I don't have any.  SOON, I PROMISE!

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.”