We're home!

We're all home!  We were discharged late this morning.  The first thing we did was head over to Babies R Us.  We needed to get her some infant Tylenol and Motrin as well as diapers, a baby shower gift and a couple things for the new baby that we needed.  A while ago, Tylenol was recalled.  Neither Babies R Us nor Shopko sell any kind of generic brand since all of Tylenol brand is still off the shelves.  We ate our favorite place, Texas Roadhouse, and headed out of Madison.  We stopped at Target before leaving completely to see what their selection looked like.  TADA!  They had their generic brand.  We got them and headed to Cassville.  Rylee and I fell fast asleep.  I mean, I was drooling I was that tired.  We both slept the entire almost 2 hour ride there.  I could've curled up on my in-laws couch, I was still tired!  Troy beamed once when we walked in.  He went crazy!!  He spent the entire day with Grandpa who gave a good report.  But once we got there, he turned into a little monster of sorts.  I remember watching my sister's kids and them being good as gold for me, then when mom and dad took them they were ready to pull their hair out.  NOW, I completely understand!  I missed that kid though.  He curled up next to me on the couch and fell asleep.  He slept there for the rest of the time we were there and then entire way home.  He had fun with grandpa and grandma.  Grandma came home from work while we were still there and he wanted to meet her at the door.  Troy and Grandpa went to the Farmer's Market in the morning.  They had to cross the train tracks.  Troy told us this and that they had to hold hands to cross the train tracks, "Papa did that".   Needless to say, he had fun.   There was a little incident with a bath last night.  Troy didn't like that bath and he let them know it! I think Grandma and Grandpa were worn out and probably happy to see us go!  Grandma made him a quilt for his 2nd birthday.  It's big enough to fit a twin bed, which he'll be moving into soon.  The front has dump trucks and fire trucks and cop cars, it's adorable.  But the back is Thomas the Train!  Troy still won't show me the front or even let me touch it.  It's his Thomas the train blanket.  Kris thinks that it's hilarious how much he loves the quilt, only for the back side.  I really like the front side and I guess since I make his bed, the front will be up!  I'll post some pictures of our last couple of days and the quilt later!

Rylee update

We had to get up by 4 this morning and considering that it was closer to 1 before we crawled into bed, we're tired!  We had to wash Rylee's hair and tummy with this special stuff that helps remove germs on the skin.  It's red and stinky.  We also gave her a sponge bath so she would be nice and clean.  Before we went to bed, we packed our bag and gathered everything that we needed for an overnight stay.  On the ride to Madison this morning, Rylee and I slept while Kristopher drove.  I can't tell you how good it felt to know that we had a bright and early surgery time so Rylee didn't have to sit hungry all morning or even all day.  She was happy with everyone, all the nurses and doctors. At promptly 7:45, the RN and anesthesiology team came to get her.  The RN brought her a princess wand so have with her when she rode in her princess carriage, or better known as a crib on wheels.  At 8:45, Dr. A came by the room and let us know that they were all finished with surgery.  It was indeed the valve on the top of her head that had malfunctioned.  They simply replaced that piece and it started draining again.  He said she would be taken to recovery in about 10 minutes so it wouldn't be long before we would see her.  At 9:15, Kristopher started pacing the room, at 9:45 the RN stopped by to let us know that it was taking Rylee a long time to wake up from anesthesia, at 10:15 we were finally taken back to see her in recovery though she had yet to open her eyes she was a little more stable.  I can honestly say that those 2 and half hours were the longest in my life, especially the last hour and half.  Kristopher said a couple times, "come on I just wanna see my baby girl".  Once she decided to wake, she woke!  She woke happy and smiley and obsessed with the monitors.  When the shunt was placed the first time, it didn't take her near as long to wake up and she was whiny and miserable!  This time, completely different.  She was outgoing with the nurses, kept flipping around in her bed, climbing on pillows...and happy.  Last time, the night time was extremely difficult as I stayed with her was awake for the majority of it.  This time, it's only 4 o'clock now, but she was hasn't cried yet, has taken a 3 hour nap (that Kris and I both took part in!), eaten a couple bottles and played a bunch with some toys.  Right now she is sitting on Kristopher's lap, cuddling and watching Nick Jr.   She has taken this well, much better than Kris and I expected.  Her O2 stats and blood pressures were really funky when we first went back to recovery.  The anesthesiologist said that her vocal cords closed when they started to give her the sleeping gas so they switched it up a little and gave her some more to relax those cords.   That could be why it took her a while to wake up.  Her O2 kept dropping to the low 90s but mostly hung around 95-96.  Her blood pressures were 80s over 20s and are now low 100s over 40s.  Her temps have been perfect 98.6°F.  As it stands right now, we are expected to go home in the morning.  They just want to observe her overnight.  Kris and I are both planning on staying in the room with her then heading towards home in the morning.  We are hoping to get out early and then we may head the Tomah direction to meet our new nephew and go to Cassville to pick up Troy.  We miss him like crazy but from the sounds of it, he's been busy playing.  Grandma said they ran to the market today and on the way back home, a train came through town.  He couldn't get to Grandma to hide behind, so he just told her "that scared me".  He absolutely loves all trains but the real ones, apparently.  He's hanging out with Grandpa tomorrow morning so a trip to the fire station may be in order!  I am excited to just get home and cuddle these babes!  However, I will miss the ice machine that is right outside our door.  I have been eating/crunching lots and lots of ice this pregnancy so to have an ice machine right out the door, I am in heaven!  And it's the soft, airy ice too.  As soon as I have time, I'll post some photos of Rylee!  Thanks for all your prayers and well wishes for her.  She's doing great!

Please pray for Rylee

Rylee's GI doc called us on monday.  We played phone tag until Wednesday afternoon.  Her thought was that they didn't check Rylee's head circum. when we were there on Monday and wanted it to be measured.  She and Shirley were looking at measurements in the past couple months and noticed a large increase in size.  I rushed Rylee into Dr. C's office, he measured her himself and faxed her neurosurgeon the measurements.  Today, neurosurgery called and wanted to see her right away.  We took her to the UW hospital's Radiology department first for a quick brain scan the over to the AFCH Peds Specialty clinics to see Dr. A, her neurosurgeon.  He hadn't seen the images yet and pulled them up while in the room with us.  It was abundantly clear that from April to today there was much more fluid.  Her shunt is no longer working.  They told us when they placed it in September that there was a chance this would happen.  We decided to come home for the night since surgery is for tomorrow.  I had some work to finish up at work, we needed to do something with Troy and pack for ourselves.  My in-laws are off tomorrow which worked out really well and said they would take Troy.  So while I was at work, Kris took Rylee (Troy came with me) to the store to pick up a few things for Troy's stay at Grandma and Grandpa's house.  We then ate supper and headed right up to Cassville to drop Troy off.  We stayed up there until after 10 in hopes that he would get tired and we could help put him to sleep.  No such luck!  We just got home 11:42 pm and had 3 new messages from the AFCH on the answering machine.  We told them to call my cell number not home so we missed every call.  Thankfully the 3rd message was full of all the info we need for tomorrow.  When we left the clinic today we didn't know when surgery would be, praying for early in the morning to avoid an overly hungry little girl.  Thankfully, surgery is at 7:45 am, we need to be there at 6:15 am.  It's going to be a late bedtime, early rise and LONG day!  Hopefully, everything goes as planned today.  Since it is so early hopefully there are no 3-4 hour delays like when the shunt was placed.  She will be admitted and spend the night there tomorrow night, along with Kris or I or both!  Please pray they find the area of the shunt that isn't working and it's an easy fix.  Pray for only a little shaving of her hair and not her entire right side!  I am extremely thankful that we caught this now, getting it fixed and after an extremely stressful few days, week rather, I am still pregnant!  Speaking of pregnant, I am aunt again to a beautiful little boy.  He made his timely entrance early yesterday.  I can't wait to meet him!  Welcome to world, Sawyer.

GI and nutritionist update

If you ask the ladies I work with, I was full of hard knocks this morning before I took Rylee to her GI/dietian appt.  I vowed I was not leaving that place until we got some decisions made, no more of this "come back in a month" crap.  Well, guess who's going back in a month?  We are.  Were decisions made? Nope.  We did discuss stuff like the feeding tube.  As of right now, if Rylee doesn't gain a decent amount of weight in the next month, than the GI doc will intervene and place a feeding tube.  Rylee is down an ounce in 6 weeks.  DOWN AN OUNCE!  WTF?  She has thrown up 3 times in the last week, but even then that wouldn't affect her weight enough to result in a loss.  She is more active but in order for her to result in a loss, she would need to literally be running full speed from the time she wakes to the time she goes to bed for the last 6 weeks and considering she can't even "crawl" that's not the case.  If you took the amount of calories that Rylee gets in 1 day and gave that to a "normal" baby doing comparable activity, that child would be extremely rolly poley.  For whatever reason, Rylee doesn't seem to absorb those calories.  6 months ago, Rylee weighed 15 lbs, today she still weighs 15 lbs.  Her entire rib cage and all the vertebrae of spine stick out.  It's gross.  What's even more disgusting is that she looks this way and we spend hundreds of dollars a month just to feed her and for what?  This is what is so damn frustrating.  There is a message on the answering machine tonight from the GI doc saying she and the dietian thought of something after Rylee and I left today.  So I will call her in the morning and find out what she has to say.  Hopefully whatever it is, is cheap and easy and WORKS!

One other little tidbit of news, I caught Rylee taking a small crawl ON TAPE!   See?  I squeal in it so turn your volume off!

Finally did it!

Kris and I have tons of insurance.  Insurance is a gamble which in our case has paid off enormously!  I met with our insurance agent about a whole life insurance policy for Rylee.  The reason we are pursuing only Rylee is strictly because of her health.  Troy is a happy, healthy little 2 and half year old boy.  We have each child as a writer or is it rider, I don't know, under Kris's life insurance policy.  It would be enough money to cover the cost of a funeral and that's it.  We're not setting out to make money off our children if they were to pass.  However, we are pursuing a whole life policy for Rylee because right now, today, she is not having any "life threatening" problems.  Those have passed.  BUT, what if in 5 or 10 or 15 years, something does happen with her heart or lungs or kidneys or brain and becomes a life threatening issue.  Or what if she is diagnosed with a life threatening disease like cystic fibrosis or cerebal palsy.  Today, she is a globally delayed 18 month old girl who is disabled as a result.  I was told by my agent that "just because she is disabled doesn't mean that it's life threatening and doesn't mean that she is uninsurable."  We went for a standard dollar amount for a whole life 10 policy which means that in 10 years the policy is paid for.   With this policy, up to 7 times throughout Rylee's life she will be given the option to purchase additional insurance.  My hope is that one day Rylee will have a family of her own and [knock on wood] never has to use it!  All I did today was apply for her.  Now, it's up to the insurance company to decide. 

Rylee has also been eating more baby food.  She didn't want to eat the butternut squash tonight at supper nor did she want to eat much of the bananas at breakfast.  We have also seen her up on hands and knees a lot lately.  Tonight she almost got herself into the sitting position and with a little help from me, she got there.  Right now, I am off to play with the kids.  My ankles and feet don't look much like ankles and feet more like one big ball on the end of my leg.  Serious swelling going on today.  It's certainly humid outside and I was on my feet quite a bit today so I am relaxing...chores will wait until tomorrow!

Changes and Ultrasound update

Jessie, Rylee’s occupational therapist, has decided to take a new approach to how she does the therapy with Rylee. Rylee seems to be more stimulated and energetic when Troy is around so Jessie is going to start incorporating Troy in therapy. Together, they will introduce stacking blocks, putting toys in a container, etc. while learning to share and take turns at the same time. I think this will also help Troy understand how to play with Rylee better. Right now, he thinks that he can sit on her or pick her up or rough house with her. Now at least he’ll know that he can’t constantly take toys from her because he doesn’t think it’s something she can have, now he’ll know she can play with those toys. I think this will benefit both of them.


Today, Tammy the program coordinator came with Krisann, the speech therapist, to discuss the swallow study and increasing the frequency of Krisann’s visits. Together, Kris, Tammy and Krisann decided that it would be best for her to see Rylee twice a month instead of once a month. I couldn’t attend this meeting today because I had an ultrasound but more on that in a second. Now, each therapy, PT, OT and speech will come 2 times a month each. A lot of things they work on overlap so they’re not needed much more than that.

As for my ultrasound, today could possibly be the second worst day of my life. I had the ultrasound to put my nerves at ease and turns out that’s not the case. Baby Klauer #3’s nasal bones are still visible. This is a big indicator that there is a chromosomal abnormality of some kind.  I really don't want to go through another chromosome disorder.  It's reeked too much havic on our family already.  And I don't want to see another one of my children have to work so hard to get next to nowhere.  This also has changed our minds completely about stem cell banking.  Unfortunately, if the baby does indeed have a chromosome abnormality than those stem cells would be no use to anyone.  For that reason, we are not banking them.  However, all his/her organs are the right size, in the right place and has the right number of each and the brain is free of excess spinal fluid. So those are positives. Right now, we just have to wait to do the microarray genetic testing after he/she is born. Ann, the ultrasound tech, looked everything over and did ask if I wanted to know the gender of the baby…I didn’t even hesitate when I answered NO! Dr. B said that in 3 to 4 weeks we can have a birthday. At 36 weeks, the baby is full term and depending on what’s happening in 4ish weeks, we’ll start this kiddo and get him/her out, get him/her tested and go home. I am miserably pregnant but measuring at 32 weeks. Baby is long and my big ol’ belly is entirely full of baby. I have gained a total of 18 lbs so will come under the 25-35 lb normal weight gain range.  That is perfectly fine.  And baby is still in head down position so we are definitely locked and loaded for birth. I have placed more urgency on that to do list I have been talking about.

I would like to see all that stuff done before baby gets here! An extra motivation to that to do list is we’re having a little celebration at our house on August 1st for my mother-in-law and father-in-law. We’re celebrating their anniversary and my mother-in-law’s BIG birthday. So Kris’s parents, brother and 2 of 3 nephews will be coming for food, fun and cake! Hopefully it’s nice out so they can play in the pool or outside. So my goal is for Kris and I to get the major things checked off our list by then so we can relax the last week or so before the baby arrives.

Our schedule for August and September is plump and full. One of my best friend’s baby shower is the middle of August which if this baby comes in 4 weeks, I’ll be in the hospital for. My sister is due around the end of July, friend Carolyn is due to have a baby the 23rd of August and my sister-in-law in due around August 31st. My dad’s long anticipated wedding is September 4th and if I have this baby a couple weeks before hand I will definitely be busy helping a lot more with that. We have some open houses for my family sometime in that area. We are going to be missing my mom’s family get together due to my dad’s wedding but we have my mother-in-law’s family reunion the 3rd week in September. Then October 1st, RSV season starts. Since we’ll have a newborn baby and Rylee, we’re definitely staying home more this RSV season, requiring more hand sanitizing and much stricter on the cold symptoms. So from October 1 to April 30, we’re pretty much going to stay home and enjoy one another. And just like last year, we are not making any promises to attend an festivities over the holidays. We are also hoping for a place of employment change at our house. One that will have us all home together much more, much higher pay, cheaper insurance so please pray!

To bank or not to bank....?

Currency banking is my thing, obviously!  But that's not the kind of banking I'm talking about.  Kris and I have a very limited time, like only a week, to decide if we are going to bank our baby's cord blood.  Hydrocephalus and Developmental delays have been "cured" by those precious stem cells.  Those are what make my baby "disabled".  These stem cells may help her live a more "normal" life.  And what if this little wiggle worm I'm carrying has the same or some of the same problems as Rylee?  It's a gamble.  However, just like everything, it may not work.  We may bank them for nothing.  But in our case, the odds are with us that we'll be able to use them.  The catch is the cost to bank them....ouch! The cost to bank them now is about 3.7% the cost of not banking them and needing them later. There is a lot of controversy over banking stem cells.  I did not get pregnant to obtain these stem cells to "fix" my sick child.  In the movie, My Sister's Keeper, those parents do.  This is however, the only shot we have at this.  In 6 short weeks or less, we either bank them or not.  We have no other chance.  We are not and cannot have anymore child.  So this is it!  Do we do it or do we just throw them away?  Right now, if I had the money to bank them, I would do it in the blink of an eye.  I do think that we could get the money to do it.  It's doesn't cost an arm just maybe a toe.  Seriously, it's not terrible just not chump change.  I want to bank them.  I want to have them in case one of our 3 children need them.  What would you do?

Continuing to see progress

This weekend was meant to clean out the garage.  Our intentions were good on Saturday morning.  We packed our old TV and some other junk to drop off at the thrift shop.  Just so you know, thrift shops don't take televisions.  I didn't know that otherwise I wouldn't have let Kristopher packed that big ol' thing into the back of the car just to have to unload the thing.  So somethings are gone just not everything we wanted.  And the garage is definitely not clean.  Not even close.  It's on that to do list that I told you about last time just not done yet.  It has to get done before baby comes.

Speaking of baby coming...my ultrasound is Friday!!  I am excited to see him or her and hope there are no surprises.  I have been having some major contractions this weekend.  They're not painful just annoying.   They're sporadic so no need to worry about them right now.  This baby is definitely a wiggle worm.  It just won't stop moving.  That's probably why I am still awake at 11:30 pm.  I can't seem to get comfy in my bed so I have taken residency on the couch.  Kristopher and I sat down this morning and decided on who we want to ask to be godparents for this babe and we're so excited to ask them in next few weeks.  Next weekend is my friend Carolyn's baby shower.  I am extremely excited for that.  I haven't seen her since she's been pregnant nor have I seen my friend Dana (who is due in early October) or my friend Annie.  And I get to see those 3 lovely ladies next weekend.  I sure hope this week goes by faster than last week. 

Troy Thomas is funny!  He talks nonstop and says some of the darndest things.  For example, he opens the door just to make sure the "blue car" is still there and says "blue car here mom. cool cool carseat in there".  We got him and Rylee a blow up pool on Saturday.  We filled it, took naps (well lack thereof but desperately tried to get him to sleep instead of constantly talking about the pool) in hopes the water would warm up in the sun.  No such luck.  After supper we went out to run off the very last of his energy.  The water was still cold but he still splashed around.  Rylee didn't care for it much and was more than content to sit on my lap and laugh at him and daddy.  Troy also has manners down pat!  He says "please" "thank you" "your welcome" and "excuse me" at appropriate times most of the time without being reminded.  Potty training has been easy peasy.  He enjoys the potty.  He sometimes even gets mad when his bladder goes dry and says "i want more!"  #2 on the other hand, is more private.  He still feels more comfortable with the diaper than the potty when it comes to that.  He's just 2 and a half and I am sure he won't got to Kindergarten in a diaper so it definitely hasn't been hard core potty training.  Maybe when I am home after the baby comes, we work more consistently on it but as of right now, it's when he wants to do it.  We do make it fun.  We sing songs.  His favorite lately is The Wheels on the Bus.  Rylee also loves The Wheels on the Bus.  They both have taken to books lately.  Troy loves the pictures.  Most of the time, he's took excited to let me read the book word for word so sometimes if the book isn't memorized, I make the stories up.  He now has started to tell his own stories.  Most of the time, I don't exactly follow the story but I am sad and happy in the appropriate times.  Rylee got a hold of a cookbook today.  She ripped an entire page out.  When I told her no, she turned, looked at me and smiled like she did something good. 

Today, we seen her pull herself up on her hands and knees more.  She still hasn't figured out that it would be much easier and faster to just move those hands and knees and she hasn't figured out how to do it.  She desperately wants to.  She rocks back and forth just can't go forward.  She can cruise in her walker.  Troy, Kris and my feet have been victims of that many times.  She stands up and walks.  It think that walker itself is more for security than anything.  Just wait until she gets those braces in a few weeks.  We'll really have trouble on our hands then.  We'll have to get her new shoes.  She's got such tiny, narrow feet that a pair of size 1 wides will probably do it.  I am really not even sure what the doctor will say or what we'll walk of his office with.  Speaking of doctors, Troy went to see Dr. K his ENT doc about his tubes.  It was just a 6 month post op check up.  I didn't go, Kristopher took him and Rylee because I have been missing a lot of work for appointments in the past few months and didn't feel like I was necessarily needed for this one.  Kris said that Dr. K seemed more interested in Rylee than Troy.  Oh well.  We just had her hearing checked at the development assessment and it was fine.  Dr. K wants to see Troy back in 12 months and if the tubes haven't feel out by then then they'll remove them.  However, Dr. R said a few weeks ago that one was already starting to come out of place.  At that appointment in 12 months, I think that we'll also have Rylee seen since he thought it was such a big deal, just to make sure.  With all the trouble that we had with Troy's ears and ear infections, I am surprised to say that Rylee has only had 1 in her almost 18 months.  Knock on wood I guess!  She also has not shown that she is allergic to anything unlike her brother.  Therefore, I think that we have all areas covered, seen experts for all types of things so Baby #3 should be easy in that regard. Baby #3 will hopefully be the one that is easy, medically speaking.  I think that Baby #3 will definitely be difficult in his/her own way considering this pregnancy and how hard and difficult it has been thus far. 

I am done babbling now.  It now 12:15 am and I think I have been watching more ET than typing.  Right now is the Jake and Vienna battle, ha!  Good night all!

Girl with a personality

This little girl we have thinks she can outsmart us.  Well, she's right!  That's exactly what she did today to us while Marcy was here for PT.  She fussed the whole time we sat in the living room observing her and Marcy, who by the way was floored by her little antics from last week at the development assessment and the little stunt with the entertainment center.  After her fussing and throwing little tantrums, I thought it would be best if we all just left the room and let her be with Marcy.  Troy and Kris made themselves breakfast and I left for work.  Kris said that towards the end of the hour she started acting like she was tired.  She rubbed her eyes and the whole 9 yards.  Marcy wondered if she woke early today but actually she slept in a little until 6:30!  Marcy left at 8:30 and I talked to Kris at 11:30.  Miss Rylee was still awake and happy.  Hmmm...we definitely got played today!  We're onto her and her tricks!


Today, I made her appointment for her SureSteps.  She will be measured and fitted on July 19!  From what I understand, her feet are malformed due to lack of muscle tone and over pronation.

Rylee's feet are exactly like the far left foot in the picture.  I am excited for her to get some braces and help straighten this problem out while we are toning her legs and feet.

We also have to go to GI on July 26, IFSP with the therapists and Tammy on August 4, see Genetics on August 16, and have a her 18 month well child check up on August 19.  Then we can have a baby!

Oh, the best thing happened at supper tonight.  I decided to try carrots and cereal with Rylee tonight.  She ate almost the entire jar of carrots and put a huge dent in the cereal I prepared for her.  Then ate her entire 5.5 oz bottle.  I am amazed at what this girl put away tonight.  AMAZING!  I just want to sing "Oh Happy Day!" 

As for me...I am extremely uncomfortable, mostly at night.  Kristopher has been asked to rub my back more and more.  I don't think that he likes doing it very much (he absolutely never offers) so I only beg when it really hurts.  I know for this reason, he is just as excited for this baby to come as I am!  Baby is starting to get the hiccups a lot and body parts are hanging out in my rib cage.  From the hiccups, I can tell that he/she is in the head down face down position.  We're locked, loaded and ready!  Next week, I have to have an ultrasound to check the baby's anatomy.  I am not finding out the gender just making sure that everything is the correct size and shape and all fingers and toes are accounted for.    The size of the baby will also be a factor.  I had an 8 lb, 9 oz baby before and can't do it again.  My anatomy simply can not handle a baby that size!  We're so close to the end but yet so far away!  There is still some cleaning I want to do around here before the baby comes and finish up some odds and ends.  If it gets done, it gets done and if it doesn't it's not the end of the world. 

A long awaited day

Today is July 5th!  Do you know what this day means?  Statewide indoor smoking ban started this morning at 12:01 am!  Rylee's chronic lung disease and the affect of second hand smoking to both our children and ourselves, has restricted where we go.  Living in rural Wisconsin there are many places that still allow smoking indoors.  There are ways for businesses to get around this like having an opening of at least 25% wall space for open air flow.  Regardless, many of the places we would like to go, don't have that as an option.  A couple of our favorite local cafes allowed smoking therefore we could never go there.  This ban will make Wisconsin a healthier state!

Happy 4th of July

Happy 4th of July everyone.  We are celebrating today and tomorrow at home.  It's not suppose to be the best weather.  Yesterday we packed up the van and celebrated with family and friends.  My dad's soon to be wife Deb's sister Denise and her fiance Tim threw a party at their vacation home on Lake Mendota in Madison.  The food was amazing!  Denise literally had a storage container FULL of cut fresh fruit.  There were brats and hamburgers for lunch with all the fixings like pasta salad, potato salad, veggies and fruit, desserts.   For dinner there were steaks, fixings and desserts.  They had 5 enormous coolers full of every kind of beverage...a variety of beers, pepsi and coke products in small bottles, water, vitamin water...it was crazy the lengths they went through to have 50 of their family and friends over.  The house was gorgeous.  At 9:30, everyone grabbed a spot in the yard to watch the Rhythm and Booms fireworks.  Those were awesome.  We couldn't see a few because of some trees in the way but all in all, it was a blast.  We got some sun and some mosquito bites.  We stayed the night in a hotel more for convenience of not having to fight the traffic and driving home at 11 at night.  My dad and Deb reserved 3 hotel rooms.  During the party, Deb's son Robbie and daughter Casey showed up unexpectedly.  My dad, Deb, Casey and Deb's granddaughter Kristen stayed in a room, Deb's other daughter Amy, her boyfriend Terry and Robbie stayed in another room.  While me, Kris, Troy, Rylee, Scott and Aubrey took the 3rd room. It was a gorgeous hotel.  Troy and Rylee were awake for most of the day with 1 nap on the ride to Madison.  Thus, at 10:30 we had 2 tired kiddos.   Thank goodness for blackout curtains.  The kids woke at 7 and we decided to take a dip in the pool then.  We were back and showered by 8.  The pool was cold and neither Troy nor Rylee enjoyed it at all!   This was Rylee's first time in the pool.  Troy hates the pool, always had.  We have to find a program around the area that has some kind of pool introduction course to help make them more comfortable with water.  We packed up and went out for breakfast, then headed home.  We thought about a trip to the zoo but we have a certain 2 year old who's ears apparently quit working sometime late afternoon yesterday.  We were tired of having to deal with that and decided that going to the zoo would probably be more hassle than anything and we didn't have our stroller.  I am sure they have ones to rent there but Troy's attitude was what made the deciding factor.  It was a quiet ride home as Troy, Rylee and I all slept the entire way.  The van is amazing by the way.  It fit so much stuff in there.  We packed a medium sized cooler, suitcase, pack n play, 2 adult bag chairs, 1 child bag chair, portable highchair, bag of linens, bag of food, 2 life jackets and a plant all in the back...we didn't have to fold a seat or anything.  That's amazing!  We will definitely never outgrow this vehicle. 

Rylee's Development Assessment

Rylee's assessment was scheduled for 8:30 this morning at the UW Waisman Center in Madison.  Originally, we were going to take Troy with us.  Last week, after talking to Grandma Klauer, we decided to send Troy to spend the day with her instead of having to get up early, sit quietly for 4 hours while Rylee got all the attention, and have to sit in the car for 3 hours.  Grandma had stuff to do at home so she took Troy on Thursday evening and he spent the night with her.  He had quite a busy day of dragging all the toys upstairs and watching/listening (or covering his ears from what I am told) to the trains.  It was much better for him than having him come with us.  We were able to focus on Rylee and the therapists and paperwork much easier without him there. 

Last night, since it was just Rylee and I and we didn't have anything we HAD to do, I decided to take her to a movie that I have been wanting to see.  She fell asleep halfway through and was the best baby when she was awake.  About the time that she fell asleep, I started having some contractions.  Those contractions ended up being every 3 to 4 minutes lasting 1 minute consistently from 9 until 11 ish.  At 10, I ate to get some food in my empty belly and by 11 the contractions had slowed way down so I was able to sleep.  But once Kristopher got home an hour later, I was up again with identical contractions.  They were painful and powerful.  Those lasted until 2 am, when I was so exhausted I finally fell asleep with the help of a back massage from Kristopher.  I woke often until I got up at 5:30 am.  Those contractions lasted throughout the much of the day.  They seemed to be worse when my stomach was empty.  As of right now, I have only had a few this hour and the baby is wiggling around like crazy.  Hopefully, those real deal contractions hold off for another 5 or 6 weeks at least. 

We arrived at the Waisman Center early today to schedule the genetics appointment.  August 16th was the earliest we could get in.  I was tickled pink!  I am so glad that we don't have to wait another 3 months!  Afterwards, we got Rylee checked into see Dr. Iyama.  Rylee went with Dr. Douglas from Audiology first.  She passed the hearing screening.  She did have some trouble with the low tones but even I could hardly hear them if I wasn't paying attention.  She sat on my lap throughout the entire screening.  Her eardrums and middle ear are clear of fluid.  We'll follow up with them again in the future.  Then she played with OT.  She sat in a highchair and they did a variety of exercises with her.  Jessica our OT would've been floored by what she did with them.  When they handed her blocks she instantly picked them up and started to bang them, smiling all the while like "I know exactly what I am suppose to do with these!"  After that, we went to our original ice cold room where we fed her and waited for PT.  PT brought in a tumbling mat with them for her to hang out on the floor as well as a box of toys.  Dr. Iyama came in as the PT was just starting.    It was getting to be Rylee's naptime so I kind of figured she wouldn't be the most cooperative.  Poor Marcy, our current PT, has been working with her for months to get on all 4s and try to crawl on her own.  And she's been trying to get Rylee to put herself into the sitting position.  She has never crawled on all 4s or been able to get into the sitting position before.  She did it today.  She had a smile on her face and looked at me with like "see I can do this when I wanna".  Little turd!  Marcy is going to have a cow when she hears about this next week.  Dr. Iyama did the speech part.  Each different therapy categorized her at a different age.

OT placed her at 10 months compared to her 14 months adjusted age
PT placed her at 7-8 months compared to her 14 months adjusted age
Speech placed her at 6-8 months compared to her 14 months adjusted age

Dr. Iyama and PT decided that orthopedic shoes were what was best for her.  They signed the prescription and we already have a new message on the answering machine to schedule her fitting.  We've been concerned about her feet and the way they roll inward so far so this is nice to finally get someone to help us take care of it.  At this point, it's a problem with the lack of muscle tones in her feet and legs so there will just be shoes, no breaking or cutting involved!

We are going to redo this assessment in 6 months.  Hopefully she grows 6 months in 6 months.  Thus meaning that 6 months from now they place her at an age with an additional 6 months.  I.E. OT placed her at 10 months now, hopefully 6 months from now she is placed at 16 months. 

Dr. Iyama also fully believes that Rylee's delays are a result of the Chromosome 6 deletion.  Even the hairline deletion like hers, can cause huge problems.  She explained that if 1 chromosome has too much or too little than it throws off all equilibrium in the brain.  Thus resulting in delays.  Kris, Troy and I do not have the deletion therefore, it's pretty much a given that that is why she has the delays as a result of the deletion.  Genetics is a fast growing study.  We have Rylee's deletion registered with the CDO.  The particular test that Rylee had done, the microarray test, is new, within the last 2 years, for clinical use.  Thus being the reason that we have limited to no information about her deletion.  Hopefully, Genetics will shine some new light on us when we visit with them next month.  Overall, the appointment went well.  Time will tell!