I Will Carry You

There is a blog that I read from time to time.  Bring the Rain is about a baby named Audrey Caroline who never had a chance of living in this earth and it's written by her mom, Angie.  Angie wrote a book.  It comes out on May 1.

I have not read however have read about other's reading it.  I think it would be a good book for anyone.  There is strong message in this book.  I can't wait to get my hands on this book.  If you get a chance, read it.  I am sure it will inspire you one way or another.  Happy Reading!

Recipes

I got a new cookbook.  I paid $5 and got 2 from our local Quota club.  I decided to look through that cookbook and plan 2 weeks of supper meals from it.  So far so good!!

Monday, April 19, 2010 we had:

Stuffing Hot Dish

1 pkg. Stove Top stuffing (prepared to pkg directions)
1 pkg. California Blend vegetables (prepared to pkg directions)
1 can cream of chicken soup
1 C. sour cream
1 can french fried onions

In casserole dish, layer prepared stuffing mix, followed by the prepared vegetables.  Mix the cream of chicken soup with sour cream.  Add on top of the vegetables.  Bake at 350°, covered, for 25 minutes.  Remove cover and bake another 25 minutes.  Top with french fried onions and bake 10 minutes.  (I added chopped cooked chicken between the stuffing and vegetables)  **Troy loved this recipe, he ate 2 servings!**
Tuesday, April 20, 2010 we geared away from the Quota cookbook and used my favorite recipe for:

Lasagna

1 lb. hamburger
1 (32 oz) jar spaghetti sauce
2 C cottage cheese
2 C cheddar cheese (shredded)
2 C mozzarella cheese (shredded)
2 eggs
Lasagna noodles
1/4 C. water

Preheat oven to 375°.  Brown and drain hamburger, add spaghetti sauce; set aside.  Mix cottage cheese, 1 1/2 C. shredded mozzarella and  1 1/2 C. cheddar cheese and eggs together.  In 9x13-inch pan, spread 1 1/2 C. of meat sauce.  Place 4 uncooked noddles on top, spread 1/2 of cheese mixture.  Then, layer 1 1/2 C. meat sauce, 4 uncooked noodles and remainder of cheese mixture.  Add 4 more uncooked noodles, remainder of meat sauce and the 1/2 C. of shredded mozzarella and 1/2 C. cheddar cheese.  Pour 1/4 C.  water around edge of pan.  Cover and bake for 45 minutes.  Uncover and bake an additional 15 minutes.  Let stand for 15 minutes before serving.

Wednesday, April 21, 2010 the kids and I went out to dinner with my dad so for lunch on Thursday Kris and the kids had:

Salisbury Steaks

1 lb ground beef
1/3 C dry bread crumbs
1/2 tsp salt
1/4 tsp pepper
1 egg
1 lg onion, sliced
1 can condensed beef broth
1 can mushroom, drained (we omitted these)
2 T. cold water
2 tsp cornstarch

Mix ground beef, bread crumbs, salt, pepper and egg; shape into 4 oval patties, each about 3/4 inch thick.  Cook patties in 10 inch skillet over medium heat, turning occasionally, until brown, about 10 minutes, drain.  Add onion, broth and mushrooms.  Heat to boiling; reduce heat.  Cover and simmer until beef is done, about 10 minutes.  Remove patties, keep warm.  Heat onion mixture to boiling.  Mix water and cornstarch, stir into onion mixture.  Boil and stir 2 min.  Serve over patties with mashed potatoes.

Thursday, April 22, 2010 we had:

Chicken Encilada

1 C. chopped onion
1/4 C. flour
1 T. instant chicken bouillon
4 C. chopped cooked chicken (I didn't use this much and still had plenty)
1 can chopped chilies, drained (I alternated a little ground cheyenne red pepper spice instead)
10 8-inch tortillas
1/3 C margarine
2 1/2 C. hot water
1 (8 oz) ctn sour cream
1 1/2 C shredded cheddar cheese
1 tsp ground cumin

Heat oven to 350°.  In saucepan, cook onion in margarine until tender.  Stir in flour, hot water, and bouillon.  Cook and stir until mixture boils; boil and stir 1 min.  Remove from heat.  Stir in sour cream.  In medium bowl, combine 2 C. of the sauce mixture with the chicken, 1 C of the cheese, chilies and cumin.  Place chicken mixture on each tortilla.  Roll up, folding in the sides.  Arrange in greased 9x13 in baking dish.  Top with remaining sauce and cheese.  Bake about 25 minutes.

Friday, April 23, 2010 we ate leftovers for dinner because we don't home until closer to 7 and we had plenty. 

Saturday, April 24, 2010 we had Honey glazed ham and my mother in laws Cheesy Potatoes.

Cheesy Potatoes

2lbs. hashbrowns
1 pt. sour cream
1 can cream of chicken soup
1/2 C. butter/margarine (melted)
1 tsp. salt
1/2 tsp. pepper
2 tsp minced onion flakes or 1/2 C onion (chopped)
2 C. cheddar or mild cheese (shredded)

Mix all together and pour into 9x13-inch pan.  Bake at 350° for 1 hour.  (I covered the top of the potatoes with corn flakes and 1/2 C melted butter before putting in the oven)

Sunday, April 25, 2010 we are having

Beef Stroganoff (crockpot version).

1 1/2 lbs round steak or stew meat
1 tsp salt
1/8 tsp pepper
1 onion, sliced (I chopped mine)
1/4 tsp garlic salt
1 T. Worcestershire sauce
1 1/2 C. beef boullion (prepared)
1 T. ketchup
1 can sliced mushrooms (I omitted this)
1/3 C. flour
1 C. sour cream

Coat meat pieces with salt and pepper.  Drop in bottom of crock pot.  Mix garlic salt, Worcestershire sauce, bouillon and ketchup and pour over meat.  Cook on low for 6-8 hours or until meat is tender.  Turn to high and add mushrooms.  dissolve flour in a small amount of meat mixture, stirring until blended.  Add to rest of meat mixture.  Cook on high until slightly thickened.  Stir in sour cream, then turn off heat.  Serve with cooked noodles. 

Next week, I have most of the meals prepped and ready to be made/finished or just put right in the oven.

Monday, April 26, 2010 we are having Cheesy Ham Casserole.  I put this casserole together today using some of the leftover ham we had last night.  Since it is put together and oven ready, I can just heat the oven and stick it in...easy peezy.

Cheesy Ham Casserole

2 C. fresh or frozen broccoli flowerets
1 1/2 C. cheddar cheese (shredded) divided in 1 C and 1/2 C
1 1/2 C. coarsely chopped ham
1 1/2 C. rotini, cooked and drained
1/2 C. Miracle Whip
1/4 C. chopped green bell pepper
1/4 C. chopped red bell pepper
1/4 C. milk
3/4 C. seasoned croutons (optional) (I crushed mine)

Heat oven to 350°.  Mix all ingredients except 1/2 C of the cheese and the croutons.  Spoon into 1 1/2 qt casserole dish.  Sprinkle with remaining 1/2 C cheese and croutons.  Bake 30 min or until thoroughly heated.

Tuesday, April 27, 2010 we are having Green Pepper steak.  I have the onion, green peppers and celery all chopped and sitting in the refridgerator in water.  I also have the soy sauce, garlic and ginger mixed in a bag in the fridge and will add the round steak to that to marinate all day on Tuesday.  That cuts down on my prepping time tremendously.  So all I have to do is put everything together and cook it.

Green Pepper steak

1 lb round steak in 1/8" strips
1/4 C soy sauce
1 clove, garlic
1 1/2 tsp fresh ginger or 1/2 tsp ground ginger
1/4 C oil
1 C. onion, chopped
1 C. green peppers, chopped
2 stalks celery, chopped
1 T. cornstarch
1 C. water
2 med. tomatoes, cut in wedges

Combine the soy sauce, garlic and ginger.  Mix and combine with the round steak and all to marinate 30 min to 1 hour.  Heat oil in large pan.  Add beef and brown.  (if not tender, cover and simmer 30-40 minutes) Turn up heat and add vegetables (cook approx. 10 minutes until veggies are tender crisp)  Mix cornstarch and 1 C. water.  Add this to the pan and thick the liquid.  Add tomato wedges.  Heat through and serve with rice.  (I assume you could add broccoli or snap peas too if you'd like.)

Wednesday, April 28, 2010 we are having Baked Ziti.  I don't like noodles that have been frozen ahead of time so I will prepare this Wednesday morning before I go to work and have it oven ready for when I get home.

Baked Ziti

1 lb pasta (Ziti or Mostacioli)
1/2 lb mozzarella (I got 4 cups of shredded)
1 1/2 lb ricotta (I don't care for ricotta so I got cottage cheese)
1 tsp oregano
2 tsp parsley
1 T granulated garlic (instead of buying this, I am going to using half garlic salt and half fresh minced garlic)
1/2 tsp pepper
1 1/2 C grated Parmesan or Romano cheese
3-4 C cooked tomato sauce

Grate mozzarella and put aside.  Cook pasta according to direction on the box.  Drain well.  Mix the ricotta cheese, oregano, parsley, granulated garlic and pepper.  Mix 1 C. of tomato sauce with the pasta.  Place a little sauce on bottom of casserole dish.  Place 1/2 of the pasta into the dish.  Layer over pasta 1/4 lb mozzarella and 1/2 ricotta mixture.  Cover with 1 C. tomato sauce and 3/4 C grated Parmesan cheese.  Place remaining pasta and repeat process ending with tomato sauce topped by grated cheese.  Bake at 350° for 39 minutes.  Let rest 15 min before serving but serve hot. 

Thursday, April 29, 2010 we are having Sunday Fried Chicken (I do realize this is Thursday and not Sunday!).  I prepared the coating today and set aside in a tupperware container to use Thursday. 

Sunday Fried Chicken

2 C. flour
1/2 C. cornmeal
1 1/2 T salt (I thought this was way too much salt so I shook some from the shaker into the mixture, if it needs more I can always add some to the top after I cooked it)
2 T papricka
2 T garlic salt
3/4 tsp celery salt
1 T black pepper
1 tsp ginger
1/2 tsp thyme
1/2 tsp oregano
2 1/2 - 3 lbs chicken pieces
cooking oil

Combine all ingredients except the chicken and the oil.  Place 1 C of the spice mixture in a plastic bag.  Shake chicken piece in bag, coating them well.  Use additional mix as needed.  On med. high heat, heat 1/4in of oil in a large skillet.  Brown pieces on all sides, remove to large shallow baking pan.  Bake uncovered at 350° for 45-60 minutes or until done.  Throw away mix that has touch raw chicken.  Other mix can be refrigerated and used within a month.

Friday, April 30, 2010 we will have leftovers or I have some browned hamburger in the freezer that I could use to make Sloppy Joes. 

Today, was meant to be a get things done around the inside of the house day but has turned into a lay around be lazy type of day.  The pile of laundry in the corner of my bedroom is screaming for me to take care of it. 

PS Rylee hasn't thrown up for 8 days.  This morning after her 10 o'clock feeding, she threw up, not once but twice.  It was the best 8 days of my life I think.  She was comfortable and eating well.  Now she'll hardly eat at all.  I hate seeing her go through this.

A glimpse into the future

We got see Baby W Klauer or Baby L Klauer on Thursday.  Great news...the kidneys are perfect size, the heart is beating and it's a good size.  This was my 3rd ultrasound.  I had an early intervention ultrasound at 5-6 weeks and another at 7-8 weeks due to bleeding.  In the first two the baby was measuring a consistent week behind so Dr. B changed my due date from September 1 to September 8.  However, at Thursday's ultrasound the baby was measuring at 21 weeks, 2 days instead of 20 weeks, 1 day and had an estimated due date of August 31.  I know dates and am not new at the baby game, this is my 6th pregnancy!, and I truly believe that September 1st is much more accurate.  We talked to Dr. B about my dad's wedding that is September 4th.  I told him this a "when pigs fly" type of world moving event and I REALLY want to be there and prefer that my water doesn't break on the dance floor.  He agreed that as old wives tales go, which I wholeheartedly believe in, dancing could definitely induce labor.  He also told me that he has no problem bringing a baby out at 39 weeks.  Especially since, if I make it to 39 weeks and my first born child was 8 lb, 9 oz and "momma ain't built for 8 lb 9 oz babies" that a week early maybe just be exactly what we want to do.  You know, that way I could actually walk around on my own the day of the wedding!

The ultrasound tech asked us if we wanted her to tell us the sex of the baby.  Kris and I decided in the waiting room that maybe we would just like a look at the "parts" and make our own determination!  For Troy we didn't peek.  For Rylee, there was no mistaking she was a girl.  Baby #3 seems to be following suit.  There is no doubting the gender of this child.  So even though I have seen the "parts" I will not tell what I think the baby is.  Plus the ultrasound tech agreed to our wishes and never told us what the gender is for sure.  We just have our guess and could very well be wrong since we don't read ultrasounds on a daily basis like she does.  She just laughed at me when I spit out what I thought!  However, Kris and I agree on this!  There's no betting a soda on this one.  However, I am not confident enough to go out on a blue or pink shopping spree!  I am still going to pack a pink bag and a blue bag and see what happens. 

I was talking with a co-worker yesterday and spit out the boys name on accident.  I made her swear to secrecy.  There are only a couple of other people who know being Kris, our babysitter and my sister.  I will not tell anyone else.  It's a surprise!  Just like the gender is a surprise!   We have a middle name picked out that would be suitable for either a boy or girl.  The first names weren't chosen for their meaning.  And if you knew the meaning of the girl's name you would know I didn't chose the name because of the meaning!  It's not so good.  The middle name is a hebrew name meaning Praised.  This child wasn't expected to be in our family but will be and for that we praise.  This child will also be my last child.  And for that, I praise.

 This is Baby Klauer #3.  Can you tell who he/she looks like?  Troy perhaps?!

The last 3 days have sucked!

Just for the record, I want to say that the "system" of public assistance fails people like Kris and I.  After our visit with the GI doctor and dietian, we are left scrambling.  We are switching Rylee's medicine from Zantac to a more powerful type of drug, I don't remember that name but it suppose to cut down the amount of acid in her stomach.  We are also switching her to a new formula called Vital Jr. She will have to take it orally for the next 4 weeks to be sure that that along with the new medicine will cut down the vomiting and cause her to gain weight.  The problem lies in that the Vital Jr is not covered by the insurance company even though it is "medically necessary" and costs $165 per case.  A case has 24-8 oz bottles.  Rylee needs to have a bare minimum of 24 oz a day.  That's 3 bottles which leaves a case lasting 8 days.  $165 per week to feed just Rylee.  I don't a single family of 4 going on 5 that could even think about affording that.  It's rediculous.  I have no idea how in god's name we are going to afford this.  The only way the insurance company will cover it is if it administered through a feeding tube.  And the only way we can order this stuff is through a pharmacy or directly from Abbott Nutrition.  Our local pharmacy has no way of accessing it because of a supplier problem.  I am out of options.  To get it from Abbott it will take 7-10 business days to get it.  I checked to see what the cost would be to have it overnighted and that tacks on an additional $80.  The clinic gave us 6 cans to start us off but I realized today that they are expired.  Nice!  And it's going to take 7-10 business days to get a case of it.  I need that stuff NOW!  And there is no where that I can get it.  What good does that do for us?  We don't have secondary insurance therefore that not an option.  Kris and I make "too much money" for Medicaid for Rylee.  We make "too much money" for the WIC program.  All we want is some kind of assistance to help with the cost of this god awful expensive formula so that we can feed our child.  I was on the phone all day and got no where.  Apparently if you have a gross annual income of more than $24000 for a family of 4, your screwed.  How does a family of 4 with a mortgage, 2 car payments and outrageous student loans live off of $24000 gross income.  That's frickin' nuts to me.  I am a tax paying citizen that has a college degree, a career and work hard for that and there are people with 5 kids sitting on their bums at home all day living off welfare.  I know that not everyone on "welfare" and SSI disability benefits are bums but I see those people every 1st and 3rd of the month at the bank.  And it pisses me off that they can sit home all day, smoke cigarettes, keep popping out more kids that grow up to turn out just like them and receive more money from the state than Kris and I together make in a month....what is wrong with this system?  It's those same people who don't pay taxes that are coming into the bank to cash the $9,000 tax refund check...what the hell?  And all I want it a little help of some kind to pay for this formula.  It'll cost us $10,000 a year to feed 1 child.  It shouldn't cost $10,000 a year to feed a family of 10.  F'in Christ...I just want a freakin' break.  It's always something.  I don't want Rylee to have a feeding tube.  I would much rather avoid going down that road, I am open to doing it if it will help her but I would rather not have to put her through that.  I don't want her to have surgery to have it inserted.  But right now, we are banking on that in 4 weeks, they put one in so that we can get her the nutrients she needs, the calories she needs to thrive and have it paid for by the insurance company.  That's awful to have to feel that way.  I have been struggling with that all day.  There has to be something out there, I just don't know where to even start looking. 

Something new

I decided that since Rylee's vomiting has increased lately that instead of giving her Pediasure every feeding that we would supplement and give her Vitamin D milk.  The reason I chose to do this was because I would rather have her throw up the $4 carton of milk than $40 worth of Pediasure.  We gave her Pediasure Saturday morning at 7 and she threw up 15 minutes later.  We haven't given her Pediasure since, we switched to Vit. D milk.  We haven't have any pukes since 7 am yesterday morning.  And she loves it.  AND she ate cereal AND BANANAS!!!  She ate half a jar of bananas at breakfast and the other half a dinner.  She loves them.  AMEN!  It's about time!

I made a console table after dinner tonight.  I went outside to play with the family and came up with this crazy idea to build a console table for our entryway out of scraps from our bed.  I made it completely by myself!!  Kristopher didn't help me at all and I am proud of that.  It's in the same room as the bench that I made so I still have to sand, paint and finish it.  Not bad for an hour and half of work.  We have wood for a couple end tables that will match our bed but we'll build those some other time.  I think I am done building.  I am builded out!

Rylee's day of Celebration!!

Today marks the 1 year anniversary of Rylee coming home.  After 79 days in the NICU, we were extremely ready to have her home.  And here we are, 1 year later.  We no longer have the oxygen and apnea monitor and all the preemie and newborn clothes are put away in a storage container marked "Rylee Preemie-Newborn".  Rylee no longer sleeps in our room at the foot of our bed.  Rylee came home and one of the first things that I did was put her in the bouncy seat.  That same bouncy seat is in the closet awaiting Baby #3.  Today, Rylee is breathing on her own, wearing 3-6 and some 6-9 month clothes and sleeps in her own bed in her room.  She is able to go out in public, in moderated situations and time frames.  The last 365 days has been jammed packed full of new and exciting and some not so exciting things.  Rylee's personality, which was strong before, has really shown through in the last 12 months and we have grown to love her even more.  Only 1 things hasn't changed in the last year, that I can think of, and that would be our overbearing control to keep her healthy and at home.  Hand sanitizer is still used, hands are still washed and visitors are still limited (none are aloud right now).  A momma that I knew buried her infant daughter yesterday.  And right now, we're having a day to celebrate Rylee being home with us for 1 year.  Life just isn't fair.  And even though Rylee is home, doesn't mean that we get to stay away from the doctor's office for very long.  In the last year, Rylee has had 1 surgery to have a shunt placed to correct Hydrocephalus, 14 nights in the hospital, at least 15 xrays, as well as a CT scan and quick brain MRI, has thrown up at least 365 times, been on countless medicines, had countless nebulizer treatments, has seen Marcy, PT, 14 times and Krisann, speech, and Jessica, OT, 7 times each, been seen by every single nurse at Medical Associates Platteville, has been to some kind of doctor appointment 74 times and has cost of our insurance company since 4/18/2009 about $500,000.  That's just the first year here.

Now onto my ramblings...yesterday, I had to work from 8 to 12.  We only have to work once in 8 weeks, plus you "bank" 4 hours when you do, so I used mine for the day I took off last week.  I now have 6.5 hours left to make up.  After work, I stopped at my Dad's to pick up our meat he gave us at Christmas time.  He also gave me the Harley he got for Troy and the play gym her got for Rylee.  They were pretty excited to see those when they woke from their naps.  At dinner time, I made oven potatoes, a new recipe in my new cookbook (a lady I work with is in the Quota Club, they did a cook book in 2005 and are still trying to get rid of them (by 1 get, 1 free, $5.)  So I picked one up for myself and am planning on giving the other one to my sister Carmen.   After we put Ryleeroo to bed, we started cleaning out our bedroom to make room for the new bed that was just screaming at us in the garage.  Troy watched, rather was in the way for a while so he and I sat in the living room and rocked to sleep...which took a total of 15 minutes.  Once he was sound asleep, I joined Kris to help with the assembly.  We ran into a snag at about 11:30 pm.  When he was building the frame, he custom made it to fit our boxspring.  However, we used the plans to make the headboard and footboard so it didn't match up like the in the plans.  We improvised, cut a couple of things and put it together.  It worked well in the end.  The bed fits like a glove.

Today, we've had cake for Rylee.  We've been doing stuff around the house.  We have a small shampooer that I just finally used to clean out Microfiber recliner.  We decided to use that shampooer in the vehicles because well it's gross.  We rearranged the furniture in the bedroom.  I prepared some meat for dinners this week.  And now both kids are napping and Kris and I are resting.  Next on the agenda for today is to clean the rest of this house.  Pot Roast for dinner!  Happy sunny day all. 

Sweet Samantha

Samantha Marie Nodolf-Carey passed away Wednesday, April 14, 2010 at 9:10 pm.  A tiny little soul left this world way too early.  She joined her 2 cousins in heaven.  Those cousins never got to take their first breath or see their mother's faces.  Samantha Marie will be buried tomorrow.  Her mother and father will have to see her sweet little face and feel her soft skin for the last time tomorrow and for that, my heart is broken for them.  I thought about attending the funeral, but I honestly don't think that I could bear it. 

Kristopher came home Wednesday evening from work and as he came to bed, which was really 2 am on Thursday, he said "did you hear the sonic boom of the meteor?"  Now, I didn't even know there was a meteor that entered our atmosphere because I spent a large portion of time trying to get Mr. Troy to sleep.  However, at 10 pm, I had the windows open and heard what sounded like thunder at first and then a HUGE bang.  Our house could've rattled, I don't really know, because Patch our dog, started freaking out and I was afraid that he would wake up Troy.  I didn't see the big flash of light in the sky but I sure heard it.  A woman I work with happened to be outside, taking a walk with her husband.  She said it was a "humbling experience because she thought, this is it, we're all going to die!"  That meteor was seen, felt and heard in over 7 states.  Amazing.  Rements of the meteor have been discovered a mere 30 miles from here.  At least it burned up before crashing into the earth!

As I got on facebook, because Kris told me that his friend posted a video of it on there, I seen Samantha Marie's mom's status.  2 am, my heart broke.  I cried.  At 4, I got Rylee out of bed for a few minutes, loved her up, cried and went back to bed.  I am not sure what parents do when their child dies.  Do they pack up their belongings and head home?  Then what do they do when they get home and have to see that child's room, clothes, toys, bed?  I hope I never have to find out.  We've had some close calls and those were much closer than I ever want to be again!

Please pray for Samantha's family especially her mom, Jaime and dad, Tim while they grieve.  Pray for Jaime as her milk dries up because she no longer has a baby to feed and Tim's empty arms.  Samantha put up a fight for her life but was just too sick.  She has her perfect body and is in an amazing world now.  Rest in peace Samantha.

Rylee's new doctor appointment

We met Dr. Wright today.  There was a lot of information that needs to be digested.  She brought in the stack of 800+ pages of medical records.  I mean, really, this was a ridiculously large stack of paper.  She listened to Rylee's heart and lungs, felt her tummy, yada yada yada.  But mostly, we just talked about the various tests that Rylee has had and what needs to be done, addressed a few issues.  Together we have decided the following:

In the future, we need to see:
Pediatric Cardiology specialist at AFCH (American Family Children's hospital)
Pediatric Pulmonary specialist at AFCH
Pediatric Ophthalmology at AFCH

We will decide in latter appointments if we need to see a Pediatric Orthopedic specialist at AFCH.

Right now, we are scheduling a plethora of appointments.

In the next month or so we are going to visit:



Developmental Disabilities & Child Development Clinic at the Waisman Center

The Developmental Disabilities Clinic offers specialized diagnostic and assessment services to persons who have, or are suspected of having, developmental problems. This includes such concerns as developmental delays, need for educational programming, challenging behaviors, or disorders of communication, motor, or social-emotional development. Assessments are provided by specialists who work closely together to provide comprehensive and integrated evaluations. Family members and community personnel have an important role on this team; their input, questions, and opinions are indispensable. As a part of each evaluation, family members and staff meet together to review findings and formulate recommendations. 

During this visit, we will visit with someone, I am not exactly sure who, to have Rylee's physical delays, cognitive delays and developmental delays assessed and decide the best plan of action for her.  Dr. W doesn't agree that physical therapy, occupational therapy and speech therapy is only visiting Rylee a total, between the 3, of 4 times a month. So we will meet with the Development Clinic and then either they or we will talk with the Birth to 3 therapists that are doing Rylee's therapy now.  I am going to call Tammi the coordinator of the Birth to 3 tomorrow and talk about the meeting with Dr. W. 

Genetics Clinic at the Waisman Center

 The genetics staff, consisting of physicians and genetic counselors, provides services to persons who have genetic disorders or birth defects and to their families. Services include a General Genetics Clinic, which functions principally in diagnosing the cause of complex processes, as well as several specialty clinics and special programs. Specialty clinics include the Bone Dysplasia Clinic (disorders of bone growth), Sensory Deficits Clinic (deafness and blindness), and the Cancer Genetics Counseling Program. Other special programs include a stillbirth assessment service and a teratogen information service. In addition, counselors are involved in clinics serving families with members with clefting, cystic fibrosis, Prader-Willi syndrome, etc. Finally, the genetics staff travels to outreach sites throughout the state, where they provide clinical care, as well as education and training for professionals and the public. 

I am hoping that at this appointment we will find out more that Chromosome 6 deletion that Rylee has. 

Gastrointestinal Specialist at AFCH

This is the appointment that we are having rushed.  We are going to see them next Tuesday morning.  Dr. W is concerned about the vomiting.  Right now, getting the vomiting under control is the first priority.  She also wants Rylee to see at GI nutritionist.  We are going to try to figure out why Rylee is so small.  Is it because of the chromosome deletion? or her nutrition? or a GI problem? or Thyroid problem?  We are going to find out.  It may take a while but gosh darn it we will figure this girl out.


One of the things that Dr. W had talked about what a feeding tube.  I knew it could come to this and we have been lucky so far to avoid it.  I am afraid we are at the point that a feeding tube is unavoidable.  I am alittle numb over this.  I just want Rylee to grow and thrive and be the happy little girl that she is and not be so sick.  She doesn't deserve to be sick.  It's not fair that she has all these problems.  We are going to conquer these.  I am 100% positive of that.  It's baby steps.  But we will overcome these!  She's a fighter.  She's stubborn.  She's just like me so I know she won't give up!

Prayer request

Remember when I told you about a little girl named Samantha that was born in the backseat of her mom's suv in March?  She has thrived but her health has deteriorated quickly.  I talked to my co-worker Sue, who is Samantha's great-aunt, today.  Samantha was baptized today.  She has a grade 3 to 4 brain hemorrhage, grade 4 is the worst hemorrhage possible.  This bleed has caused her head to swell 1.25 inches.  She also has a problem with her heart.  I am not exactly sure what this is but her mom refers to it as a PDA.  She has an echo that showed no improvement.  She is scheduled for surgery to fix the PDA tomorrow at 3.  But with that and the brain hemorrhage, the doctors have given her no chance for survival.  Samantha is the first child to her parents.  Please pray for Samantha and her parents, Jaime and Tim.  Throughout our entire NICU experience, never did the doctors tell us Rylee wouldn't survive.  I am no idea what they must be feeling right now.  I have lost 3 "babies" but I didn't know their gender or personality or what they looked like.  Jaime and Tim know everything about that little girl.  They are praying for a miracle.

This weekend has been such nice weather.  I love it!  We were outside constantly Saturday and today.  Troy came in both nights filthy dirty.  A few weekends ago, Kris made a kids size picnic table.

It's gorgeous.  I picked out some stain from C&Js General Store.  It's a mahogany stain.  It wasn't sure if it would be too dark or not.  So this weekend, I broke out the stain brush, rag and rubber gloves and stained it.  It took me like 30 minutes to do it.  And it turned out awesome!!

As I stained the table, Kris worked on building me a bed.  I know you're thinking a bed?  Since I have lived on my own which has been the last 7 years, my bed has been a box spring and mattress on a frame.  I've never had a headboard and footboard.  I found the bed plans on Knock off Wood.  I love the Farmhouse bed so we printed off the plans, Kris got the lumber when he got the picnic table lumber and a few hours later, I was sanding the headboard!

It turned out that the 1 x 8 boards that we got weren't the 1 x 7 1/2" they should've been, they were 1 x 7 1/4" so in the middle we stuck of the headboard we put in a 1 x 2".  It turned out cool.  Once, I finished sanding it, I stained it with the same stain as the picnic table.  We had an entire gallon and the picnic table didn't even put a dent in it, we neither did the bed for that matter.  

The footboard is just like the headboard just shorter.  The headboard weighs like 100 lbs at least.  Incredible.  We are got to put some polyurethane on it to give it some shine!

We had a bunch of scrap wood pieces so I turned those into a tiny little bench that will house a plant or potted flowers sometime.  The bench didn't cost us anything since it was scrap wood pieces and I used some interior paint we had as well as some contact paper.  This is the finished product.  Kris cut most of my boards and still some nailing but other than that, I nailed and measured by myself.  Not bad for my first solo project.  It's wobbly but it's not meant to house a rear end!

I pained the top and the outside of the legs white first.  Cut out "The Klauer's" in contact paper, applied over the white once it was dry and painted over top with the sage.  Once dry, I pealed off the contact paper and sanded down the tops, edges and outside of the legs to give a countryish look.  It's super cute!  It's perfect for our entry!  It measures 15" tall, 18" wide and 12" deep.  The legs even have an upside down V cut out of them.  Lovely!

As of right now, our bed is housed in the garage to air out a little and wait for the polyurethane.  Next weekend, we will assemble it, in our room of course, and sleep on the bed.  It'll be so nice to have in there!

So, our weekend was jam packed full of projects.  Kris and I enjoy doing them together.  It's fun.  And the kids enjoy the fresh air outside.

Also, Rylee has caught something.  She is most susceptible to catching stuff this week because she is due for an RSV shot but won't be getting one per Dr. C's request!  She has goopy eyes, runny nose and her breathing is very loud today.  Last night, while visiting my grandma she fell asleep and I watch her retractions as she breathed and snored.  Today, has been much of the same.  I am hoping this new doctor, Dr. W, that we are seeing on Tuesday will give us some insight.  Especially with the damn puking.  We are so tired of the puking.  I feel so bad for her.  She threw up 3 times yesterday and 3 times today.  I just wish this would stop.  I am afraid of what this is doing to her esophagus and mouth.  I am at my wits end!!  

Hand Sanitizer

This is an issue I obviously need to talk about.  More for me just to vent and get crap off my chest.  So, hand sanitizer..easy concept right?  Chronically ill child, can't fight off colds and infections well, mommy says "you can hold her but you need to use hand sanitizer first" which mommy provides...easy as pie.  I HAVE GOTTEN THE MOST SLACK OVER FRICKIN' HAND SANITIZER.  It's like I am asking a lot of someone to wipe their hands with a Sanihand wipe or rub a little hand sanitizer on their hands.  Why do I have to deal with the snood comments and those "stinkface" looks (that's Kristopher's term!)?  I am just trying to keep my child healthy and home.  This week it is extremely important that hand sanitizer is being used because Rylee is due for another Synagis shot.  Synagis is a shot to prevent RSV.  BUT, Dr. C has denied her the April dose because RSV season is close to over.  However, he told me that this week she is most susceptible of contracting RSV or some kind of respiratory infection/cold.   And that is why hand sanitizer is important this week.  I have a bottle in my car, purse, diaper bag, desk at work, 3 at home...everywhere Rylee goes there will be hand sanitizer there.  Even my grandma would have to use hand sanitizer to touch or hold her.  It's that important.  So with that said...why the slack?   I actually got the cold shoulder last night because of hand sanitizer.  And that's just the icing on the cake.  I have gotten the looks, comments, people being mad at me all over hand sanitizer.  HAND F'IN SANITIZER.  I want to scream over hand sanitizer.  I am not crazy because I require hand sanitizer just to keep my child safe and healthy.  That's called being a good parent and doing what the doctor has told me to do. Why wouldn't you want keep this super uber cute little girl healthy?

A good day at UW hospital/AFCH

Well, I was thinking last night after I wrote my post.  I decided that the kids and I are going to Isabelle's birthday party tomorrow.  I realized that I didn't go to her birthday party last year because we were in Iowa City and was suppose to bring Rylee home that day.  Well, it turned out that we brought her home, the following day but I still missed the party.  I have never ever missed any of my nephew, Jared, and nieces, Jalyn, Lexie and Avery's birthday parties.  Therefore, there is no way I am going to be selfish enough to missed that party tomorrow.  Now for health purposes, we can't stay long (more on that later). 

Next up, is Rylee's day today.  She started off today with physical therapy.  Now we haven't seen Ms. Marcy for probably 3 weeks.  She picked her up and said, "Oh my, I think she's grown a lot.  Has she gained weight?"  I could laugh at that comment now after seeing her weight today (more on the later).  She worked a little on getting her to sit.  Rylee sat like a pro.  Turns out she is a pro!  Marcy has officially declared her as a self-sitter.  I have tears right now just thinking of that.  That's huge!  That was a goal and it's been met.  Next goal, get her to get herself into the sitting position and to crawl.  We are frickin' working on crawling.  However, Rylee has proven today that she has a stubborn streak in her, I wonder who she gets that from!  She absolutely did not want to bend her knees beneath herself.  And she fought Marcy the whole time, completely wearing herself out in the process. 

After therapy, Rylee and I got in the Jeep and headed to Madison.  When we left it was sunny.  When we got to Verona it was snowing.  I was in awe by that.  It was crazy.  We left at 8:48 and the GPS told me we would arrive at 10:48 am.  That freaked me out a little because we had to be checked into Radiology at 11 and I had no idea where Radiology was in the great big hospital.  I parked the car at 10:01, haha.  Rylee needed to eat anyway so the extra time would be used.  I put Rylee in the stroller, gave her a bottle and proceeded into the hospital.  We went down to the cafeteria to get Mommy something to drink and waste a little time.  I sat down and Rylee puked all over her outfit and the only blanket that I had with us.  Thankfully, I packed another out but I am so tired of the puking.  Kris and I were talking and decided that Rylee pukes on average at least once a day.  Today, she has thrown up 5 times. 

We checked into Radiology at 10:45 am and were taken back right away.  They did not sedate her because it was just a brain scan that took 3 minutes.  I did not get to go back with her for the MRI because of Baby #3.  She did perfect.  Mario, the tech, said she was the most well behaved 14 month old he's done.  She didn't cry at all. 

I decided to go right to the AFCH to get checked in even though we were an hour early because we didn't have anything else to do.  We played and waited and talked.  At 12:10 (10 minutes before our appointment) we were taken back.  The nurse weighed her and took her head circumference.  She weighed...14 lb, 15 oz. (which she weighed on February 22nd).  This surprises me but it also doesn't.  This girl has been puking for 2 months so it doesn't surprise that she hasn't gained much.  What surprises me is that she hasn't gained anything.  Dr. A came in to visit us.  He flipped the computer screen around so that I could see the MRI brain scan from earlier.  I had no idea what I was looking at really except that I could see her eyeballs (freaky).  He pulled up her CT scan from last Sept.  Her 3rd quadrant measured 14 cm in diameter.  Today it was 11 cm.  He was please with this but told me that it would go down even more.  He wants us to do a repeat of today in 6 months and that is the scan we can use as a base and what we compare later brain scans to.  He also informed me that he will no longer be Rylee's neurosurgeon because he's moving....to Kenya to teach neurosurgery there.  That's freakin' cool.  Now we will have Dr. Bragg.  She is young and he's trusts her wholeheartedly to fill his shoes for the next 2 to 4 years (at which time he will probably be at retirement age because he is getting up there in age, I'm sure). 

I made something new tonight for dinner.  It was Beef Parmesan and I made noodles and garlic bread to go with it.  I like Ragu sauce.  Nothing even compares to Ragu.  Therefore, any other form of marinara or spaghetti sauce just doesn't appeal to me.  I ate it though.  It was alright.  Easy to make.  I may make it again.  I am sure Kris would like it.  Tonight, Troy has been obsessed with Rylee.  He's been loving her, hitting her with a pillow (which may sound cruel but she loves it when he does it) and trying repeated to jump over her.  Now besides the jumping thing he was good with her.  Then he got this wild burst of energy and started throwing his entire wooden train track pieces all over the place.  I, of course, got mad and told him to pick them up NOW!  To my great surprise, he did.  He came over to me, tapped me on the arm repeated and pointed to box that holds his train set.  Job well done Troy! 

I did it!!

I did it!  I took both kids to Dubuque (Target and HyVee) by myself.  It was raining the entire time and I was wearing heels that ended up being extremely slippery.  I've heard that HyVee was the best place to go for produce.  Um ya, all I can say is amazing.  Plus, their carts have cars in the front and a place in the back for an infant...sure it's a boat to get around the store but made Troy happy.  I had 4 full grocery bags when I left, mostly fruits and veggies, and spent a total of $38.00 which was even better.  I had some stuff at Target that I needed to get and decided tonight was as good a night as ever, even in the rain, and we were out of bananas.  Needless to say that by the time we got done with both stores and wearing out the sayings "Troy, sit down please" "Troy sit on your bottom" and by the end of our trip those "TROY, SIT DOWN" probably almost came across as "TROY, IF YOU DON'T SIT DOWN I'M GONNA PADDLE YOUR ASS!"  Of course, I would never paddle his rear and wouldn't say that to him (in public).  Oh my gosh, I was completely exhausted by the time we were in the car on the way home.  And it was not Rylee who exhausted me the slightest.  It was the trying to get both kids into the store before everyone was soaking wet and trying to keep Troy from being run over by those crazy Iowijan drivers (and they weren't even on their cell phones). 

Once we arrived home, I carted them both in the house, carried in the groceries and put everything away.  Then bathed 2 kids who desperately needed baths.  I don't know if I'm cut out for this mommy business.  But I guess it's a little late to change minds.  I can't even imagine trying to do a night like this with 3 kids.  So don't expect to see me out and about with 3 kids.  We'll stay home and place here instead.

Tomorrow is #1 of 2 trips to Madison this month for doctor appointments.  It's going to just be me and Rylee taking this trip.  Troy will be spending the morning with daddy and then going to daycare in the afternoon until Rylee and I get there to pick him up.  Rylee and I have quite the day in store.  Rather Rylee does, I just have to cart her around.  Starting at 7:30 Rylee has physical therapy until 8:30.  Then we are in the car on our way to UW hospital for her 11:00 Radiology appointment.  She is scheduled for a MRI at 11:15 and then see Dr. A, neurosurgeon, at 12:20.  I believe she will have to be sedated for the MRI.  We have to check in at Radiology at 11 at UW Hospital.  The paper that was sent to us said to register at Radiology G3/3 Registration desk.  That's it.  I have no freakin' clue what that means.  It doesn't say where to park or what floor it's on.  Then after that we have to fly over to the American Family Children's hospital (which is connected to the hospital) for her appointment with Dr. Albright.  I am going to park in the children's hospital ramp because I most familiar with that one then ask guest services where to go to get to Radiology.  I think we will have plenty of time to figure out where we are going.   I'm not too worried.  She can't eat before it so she's going to have to suffer through until it is over. 

After we are done with the appointments, we are going to make a quick stop at Toys R Us to get my niece Isabelle a birthday gift.  Happy 2nd Birthday Izzy!  (Her birthday is today!)  Her birthday party is Friday at 6.  Not sure if we will make it or not.  I don't get off work until 6, then have to go get the kids from daycare (daddy has to work, AMEN!) and then try to navigate my way to her Grandparents house.  Plus I would be doing it alone with 2 kids, trying to hold 1 away from tearing into her gifts while holding the other after a 10 hour work day.  UGH! I am tired thinking about it. 

My rash is still itchin'.  I was suppose to have my third shot of progesterone yesterday.  The key word being suppose to.  The nurse seen the note on my file that I had called in about the rash.  She took a look at me, we talked about the shortness of breath, she called Dr. B (who wasn't in the office) and decided that she didn't feel comfortable with me receiving the shot.  I couldn't agree more.  I was not broken hearted when I left the clinic.  This rash has calmed down quite a bit since last Tuesday.  I was so afraid that getting the shot would make the rash "come back" (meaning the increasing the intensity of it).  Literally, my eyeballs itch.  Benadryl doesn't do anything for it just knocks me out.  I've been miserable for the last 8 days.  Upon leaving the clinic yesterday, I was instructed to call Dr. B's office today.  So I did.  Dr. B says to get an appointment with dermatology.  So Friday, I am headed to see Dr. H.  Last time I had a rash it was PUPPs and Dr. H told me I had dry skin or eczema.  So I think this appointment is 100% a waste of time. 

This baby is a sleepy one.  I don't think that I have felt it kick for a couple days.  That's nothing new at this point since the kicks are hardly felt unless laying in bed.  I am excited to feel him/her kick more.  I was very active today so he/she has been more than lulled to sleep.  Speaking of sleep, I need to get Troy to lay down and go to sleep.  Yes, it's 10 pm and he is still spin circles in bed.  And I'm tired too.  Good night!

Thunderstorms

It's raining and thundering and lightning right now.  Tonight is the first time that I remember Troy even mentioning the thunder and lightning.  Being the mom that I am, I explained the thunder and lightning to him and we stood in the front door for a while and watched the rain and lightning and listened to the thunder.  Problem was, that ever time it thundered I had a 2 year old who threw himself at me.  He doesn't "wike" it.

Yesterday was Easter.  I tried to get Troy to say Easter Bunny.  Just bunny comes out as bunny but add the easter infront and you get "eater bun bun".  We spent the afternoon with my grandma, mom and sister Carmen, niece Jalyn and nephew Jared.  It was fun.  Jared brought his bean bag chair that he got from the easter bunny.  Jared, Jalyn and Troy had quite the time with that.  Troy was so tired by the time we got in the car that he fell asleep before we got to Kwik Trip, which is like 3 or 4 blocks.  Rylee had fun too.  She also fell fast asleep in the car.  Once home, we (me and the kids) took a 3 hour (mine was only 2ish) nap.  It felt so good!   I set a ham out right away in the morning, it was still frozen at 5 so that was out for dinner.  I had to get groceries so so so bad (which I was suppose to do the day before but ended up stopping at my sister's house before heading to get groceries and didn't make it to the grocery story before dinner), so we decided to grab a sandwich and get groceries.  After grocery shopping, we stopped at my dad's to wish them a Happy Easter.  We ending up leaving with 2 HUGE bags full of gifts and a few baskets and bags of things.  These kids are sure spoiled.  Troy and Rylee each got a new outfit, swimsuit, little toy, chocolate bunny from Grandpa Harley and Deb.  Troy got a bubble machine and bubbles from Great and Bob while Rylee got a talking puppy and a box full of assorted Betty Janes chocolates and suckers (1 year old and already loves Betty Janes chocolate...definitely takes after her momma).  Troy also got an easter basket full of chocolate and a bag full of eggs that Grandpa and Deb were going to hide for him (since it was rainy today, we're going to hide them for him and make him find them outside some other day).  The amount of stuff we left with was amazing.  AND, they still have each of our christmas presents there (Troy's Harley motorcycle, Rylee's little jungle gym, and our quarter cow, which we could use).  Some day, we'll get them.  Troy had a good time visiting with them.  Deb took him outside to the swing set and they went down the slide numerous times in the pitch dark.  It was a long day! 

This was Troy's first Easter that he kind of got the concept.  He knew he wanted the Easter Bunny to come.  That silly Easter bunny hid a dozen eggs all around his room.  The last time he seen a plastic Easter egg was at Great Grandma Dodds the week before and all of those were empty.  Once he shook the egg that was hid in his bed and realized that something was in there, he was all for search for more.  It was awesome.  Last year, he wasn't overly excited about an egg hunt.  Next year should be even more fun. 

Last week, I had my second round of Progesterone.  It didn't go so well.  I have some kind of rash now as a result...or maybe not a result.  I have my third round tomorrow so if I break out "again", which I don't think I could since I am STILL broke out.    Dr. E doesn't think that it was caused by the shot and doesn't think that it is PUPPs like I had when Rylee was born because that is a rash that typically starts in late pregnancy (30 weeks isn't late I don't think but whatever).  No one is sure what is going on other than I am ready to crawl out of my skin or scratch it off.

The belly is getting bigger.  It's all out in front.  And it's the last time my belly will ever be like this!! AMEN!  Baby Klauer #3 is it!  We were talking about our kids going to school over the weekend and realized that when Troy is a senior in high school, Rylee will be a junior and Baby #3 a sophomore.  HOLY COW!  They will just binge out of here into college...at least we have 16 years before that starts.

Other news, Rylee took a header off the couch tonight right onto a toy train.  Poor girl has a big purple gooseegg.  I left her on the couch, my bad, while I tended to Troy who had just fell and bonked his head on the plush part of the recliner.  No more time on the couch for that little girl.  She flipped herself off in record time.  I turned a she rolled herself over and it was like slow motion trying to catch her.  Poor thing.  (Troy's by the way is perfectly fine, only required 1 kiss). 

Right now, Rylee is snoring next to me, I rather she stick close by for a little bit since she knocked her noggen pretty good and Troy will not lay down for anything.  This is the most annoying part of my day, trying to get him to go to sleep.  Rylee is like Kris, she can fall asleep like there is no care in the world, anyway and easily.  Troy is like me, who frets over every little thing, takes a while to drift off to sleep.  I require a lot of sleep while Kris doesn't.  I am feeling extremely sleepy after this extremely long day.  Good night all.