KK Update

I took Miss K back to doctor this week. We went to go see a different specialist, Dr. Osguthorpe. After listening to the whole story, asking lots of questions, and examining Katelyn, he confirmed that her original diagnosis of Cerebellar Ataxia is correct. Her ataxia (wobbliness) has improved to me over 50% since she was first seen. It is definitely not gone, but is improving. I notice it more when she is tired. It is basically going to just take more time for her brain to completely recover. This was reassuring to me. I had been worried about just waiting things out. What if there was something else wrong that we could fix- to help her get better faster? It make take several more months, but at least I know that we are on the right track. When I asked him about her starting kindergarten in the fall, he told me that he expected her to make a full recovery and she should be fine in school this fall. What a relief! I seriously feel like a huge burden has been lifted and that makes all the waiting a little easier to take.

A really good thing that came out of the visit- the doctor told Katelyn that she is BETTER. Even though she is still recovering, it is important for her to know she can do all the things that she used to do. She can make her bed, clear her dinner dishes, play with friends, go to preschool, etc. She has regressed emotionally and socially to where she was at 2 1/2 to 3 years old. She has been having lots of temper tantrums and being really moody and defiant. The doctor said this is really common for kids who are sick for a long time. The best thing to fix this is to get her back into her old routines. Thankfully, now that she believes she is BETTER, she has been acting a lot better. Amazing. She still know that she is wobbly sometimes, but she told me that "it is not attacking my brain anymore."

When she was sick she never wanted to go to bed, but rather would stay up later with Jeff and I. Now that she is better she told me, "Mom, I am better now so I can't stay up late anymore." Yep, that's right. This has applied to lots of things, but has made my life a lot better too. It is amazing what the mind can do. We still have moments, but I'll take moments over all day, every day. I am so excited to be finally getting my Miss K back!

Meeting Miah

Due to all the complications surrounding my sister's delivery, my kids didn't get to meet their new cousin Jeremiah for a while. When they finally got the chance they were so excited! Ryan is only a little more than 3 months older than Jeremiah. They definitely grow so fast!


Sweet Jeremiah at 2 weeks, 2 days old.

4 Months

This smiley Ry guy is 4 months old! I took him into the doctor this morning for a well check. Here are the new stats:

Weight: 15 lbs. 11 oz. (64 %tile)

Height: 26.5 inches (92 %tile)

Head Circumference: 16 inches (12 %tile)

Ryan sleeps for 8 hours at night. He loves to smile and drool. His newest discovery is that he has hands. He likes to hold toys and eat his hands a lot. He is a very happy baby. He's usually only sad if he needs a diaper change, a bottle, or a nap. He can turn 180 degrees while lying on his tummy. We have heard a few real giggles so far and look forward to many more. He still doesn't have much hair, but it looks to be blonde. His eyes are still blue. Ryan loves to kick while laying on his back and when getting his diaper changed. He is a very active mover and I think that we'll be in for some trouble as he gets bigger!

A few more pics from the past month:


Smiley Ry Guy

1-11-2011

With brother Ethan.

Sleeping on dad.

1-15-2011

Bowling with the family (and mom).

1-18-2011

Getting some time in with Grandpa H.

1-25-2011

Family Fun Night

For a little stress reliever, we decided to have an all-out fun family night. (Dinner AND Bowling)The kids didn't have school because it was Martin Luther King Day. So when dad got home from work we were ready to hit the door. The older kids had gotten Brick Oven certificates from school so we decided to use them. Kicker #1-Upon arrival the wait was 35 minutes. No problem- we were going to have fun! Once seated we ordered our dinner. The kids' food got there fairly quickly, but by the time Jeff and I got our meals the kids were finished and ready to leave. Kicker #2-About halfway through dinner we realized that the coupons had gotten left at home. I guess we'll get another shot at Brick Oven, but not on a Monday night- or a holiday.

By the time we finished eating and paid it was almost 8:00. Dinner took longer than expected, but we were still going bowling. It was going to be FUN! We drove over to BYU, but much to every one's dismay,(Kicker #3) it was all booked up and only open for previous reservations! Much crying, wailing and gnashing of teeth ensued. As a last ditch effort for bowling we tried the regular place in town. Kicker #4- It had a 45 minute wait for a lane. So we headed home. The kids were so sad that we had a one game Wii Bowling tournament to get us warmed up for the real thing. I don't think that it really worked to take away the sting of the night, but I tried.

The next day I called BYU to see if we could bowl that night. Good news! It was open and we could go! So we had a family night- part 2- and finally went bowling. Jeff beat us all. I was the bowling assistant and Ryan holder, so I didn't bowl my own game. Katelyn was so happy to finally get to go, as she was the one who had the idea in the first place. After bowling Jeff took the kids down to the gas station to get Slurpees. (Another K request.) So we finally had the fun family night of our dreams- or at least Katelyn's anyway.

K's Journey

This is what started it all. November 15, 2010- I caught Katelyn napping on the floor. A very unusual occurrence, so I thought I should take a picture. Little did I know what a journey this would take us on...

After two weeks of Katelyn taking a nap (or 5) every day, I took her into the pediatrician (Friday). This just wasn't her normal behavior. She never takes naps, and if she happened to, she wouldn't go to bed at night. But she was sleeping lots and still begging to go to bed at night. The doctor checked her for some normal things that would cause tiredness like anemia and a bladder infection. Both tests came back negative so the next day (Saturday) he send us to the lab for some blood work. Her results came back all negative- even for mono.

Monday she developed some new symptoms. I noticed when I got her out of the bathtub that she seemed a little wobbly. Unsteady on her feet. By the end of the day it had worsened. The next morning I was really alarmed when she was still doing it and her speech was not always clear. We immediately went to the doctor (Tuesday). He was quite concerned and sent us immediately for an MRI. I later found out he was looking for a brain tumor. SCARY! But the scan came back negative. So now we knew what was not going on, but not what it was. He sent us home while he did some searching and calling. Wednesday I talked with the doctor on the phone. He was still searching and wanted K to be seen at Primary Children's Hospital. So we made a plan to head up the next morning to the ER there.

December 4, Thursday morning we left. I picked up Jeff on the way at his office. Mid drive the doctor called me. (Jeff was driving.) Change of plans- go to admitting. OK. We had packed a few things in case we were admitted, but we weren't really prepared. Ryan (2 months old) was with us too.

We were admitted. The parade of doctors began. Pediatricians and Neurologists, all wanting to hear the same story again and again. It was decided that they would perform a lumbar puncture on my sweet Miss K. :( So she couldn't have anything to eat or drink since they would be putting her under. She dealt with the IV insertion amazingly well considering she had already had that done once for the MRI and had been poked for blood draws 3 times already. They did the procedure in her room as Jeff and I were in there too- pacing in the little corner that wasn't occupied by all the doctors and nurses. The results came back perfect.

Ryan can't bear to watch the LP. Neither can mom or dad.

Later that night Katelyn got all hooked up for an EEG to monitor her brain waves while she slept. The doctors were looking for seizures. She got an awesome hat and about a gazillion wires stuck to her head for the night. The next day the results look normal.

K sleeping soundly in her bed. Rice Krispie treat still in hand.

Friday morning comes. The doctors are deciding whether to run more tests or not that require anesthesia. Katelyn is begging for food. They finally let her eat at 11am when they decide the plan for the day. A few more blood tests and more waiting. In the afternoon they convene and decide on a diagnosis.

Post-viral Cerebellitis-
They put it together like this- she had a virus (no symptoms other than tiredness). The virus settled in her brain. Her body is fighting the virus, but also her brain. Swelling occurs in the cerebellum impairing her motor skills (ataxia) and her speech. There is nothing they can do but let her body recover on its own. K should be better in 3 weeks. They will keep her another night for observation and we go home on Saturday.

Ethan and Erin come up for a visit. They think the playroom is the best and want to come back soon. Me- not so much. Two nights of no sleep with a 4-year-old and newborn are not so great.
K gets to ride in the wagon on the way out. She was so happy to leave!

Fast forward another 6 weeks--
K is not better yet. She is slowly showing signs of some improvement. She is not so ataxic. Her newest symptom of tongue thrusting that showed up 2 days after leaving the hospital has lessened. Now we are left with 1-2 naps a day and a very moody and unreasonable girl at times. I know that she is probably just sick of being sick. I am too. I want my sweet Miss K back, with her spunkiness and teasing of her siblings.

So please excuse my lack of posting. Things around here aren't as they should be. I am trying to get caught up on some things. So look for some back dated posting.

And when it rains, it pours. My sweet sister has relapsed into TTP. She had her baby delivered by C-section on January 10 (3 weeks premature). He is big and healthy. My sister is still fighting to get better. She had her spleen removed last night to try and get rid of all the bad B cells in her body that are killing off her platelets. So far it seems to have helped. My mom has flown in to help take care of baby Jeremiah and big brother Abram. Please keep us all in your prayers. I know it can help.
How can something so sweet cause so much trouble?

Baby Jeremiah Blake Wilson

8 lbs. 40z. 21"

Meeting Great Grandma and Grandpa Hutzley

After Christmas we took a day to drive up to Ogden to visit my grandma and grandpa Hutzley. Ryan had never met his great-grandparents before. It was a good visit. It was sad to see my Grandma in declining health, and my grandpa suffering from Alzheimer's, but I am so glad we went. This ended up being the last time that I saw my grandma before she passed away in May 2011. Such a sweet lady- I love you Grandma!

Christmas Day Fun

Christmas morning began bright and early. The oldest two were up first. Katelyn woke up later, and Ryan was our sleepyhead. He got to open his presents after everyone else. The favorite presents of the day (by child)...

Erin got an 18" doll with brown hair with outfits, a Fin-Fin tank, and some new clothes.

Ethan got a chocolate orange in his stocking (and some coal), a spy watch, and an awesome Harry Potter Lego set (The Burrow).

Katelyn got a mini van for her dollhouse, some accessory sets, the Hi Ho Cherry-O! game and some books.

Ryan got some bottles, diapers, a toy pan set, a rumbly lion, and a racecar spinner. Dad was very surprised by a flip waffle maker, and mom loved her lotion, pedicure, and Hale Center Theater gift card.


We had dinner that night with Heather, Jordan, and Abram. Heather made a delicious red velvet cake. Amazing!

My pregnant sister Heather. Close to delivery of baby boy Jeremiah.

This Christmas season seemed to happen without me. With Katelyn's illness and taking care of newborn Ryan nothing else seemed to get done. I am just relieved that it is over and we survived. Christmas is usually Katelyn's favorite season and this year she just doesn't really care about anything. I hope that she gets better soon and we get our KK back. I am really missing her smile and spunk now.