Hydrocephalus Walk

The Hydrocephalus Walk is Saturday of this coming weekend. Here is some helpful info.

Why we should walk
Supports crucial hydrocephalus research and program services.
In 2010 ‐ over 8,000 people participated in 25 HA WALKs across the U.S., raising more than $730,000!
HA’s target for 2011 is 9,000 walkers raising $830,000
Hydrocephauls Association’s mission: to eliminate the challenges of hydrocephalus.

When?
Date:
September 3, 2011
Location:
Sugarhouse Park
Address:
2100 South 1500 EastSalt Lake City, UT 84106

Event Location:
Need directions? Click here for a map

Event Schedule:
Breakfast and Festivities Begin
9/3/2011 7:45 am - 8:00 am
Check - in for Hydrocephalus Heroes (Kiya)
9/3/2011 8:00 am - 8:30 am
Check - In for all participants
9/3/2011 8:30 am - 9:00 am
Opening Ceremonies and Team Welcomes and WALK begins
9/3/2011 9:00 am - 11:00 am
Fees:
Participant: No FeesWALK 2011 Participant

Growing Up

Today was Lex's first day of school. I am having a hard time with the all day concept. I can't believe that he is already this old! I am looking forward to picking him up.

Last week Matt, Lex, and Mason went to San Diego for a boys trip. I think that Lex had fun, but Mason had a hard time being away from home. Matt gained a new appreciation for me and has decided that he doesn't want to switch places with me anytime soon. Me and Grandma Squishy took Kiya to St.George for a non-stop shopping adventure. We spent the trip eating out, shopping and relaxing. I have decided that I would make a very good rich wife. It was so fun to go to the stores without the sighs of my disgruntled husband. I felt a tear forming in my eye as we left the condo and my fantasy life. It was nice to have a break anyway.

Things are going good. Kiya rolled to her tummy for the first time ever today during physical therapy. Matt and I were so excited! Right now we are working on sitting, rolling and fine motor skills. We will be meeting with a new therapist with Kids On The Move and also going to outpatient physical therapy to meet all of her needs. My schedule is going to get crazy. Kiya's infection has fully resolved and her vomiting has decreased immensely. We are getting a z vibe vibrating therapeutic spoon to help her swallow more quickly. Oral feeds are going about the same although I have gained some weight showing her how to eat like mama.

The Hydrocephalus walk is approaching. September 3 at 8:30am registration begins at sugarhouse park in SLC. I would like to get a head count for Team Kiya so feel free to post a comment if you plan on attending. It will be a great unifying and empowering experience to be among other superstar children like Kiya.

Nervous Breakdown

I am not sure, but I think I may have officially lost my mind. Saturday I went to the salon and watched my hair turn from blond to chocolate brown. Some may be worried that I am in the witness protection program, but have no fear I have just had a breakdown. I can control the color of my hair if nothing else. Lex says I don't look like his mommy, Mason could care less, and Kiya loves me no matter what. Matt says he loves it, but he has learned not to say otherwise. I am still adjusting to the change, but then again change is all I know. We went to the park today and enjoyed the sunshine. Kiya has started saying DaDa! This makes my whole month. It is so great that she has the ability to progress with sounds and talking. Not to mention it may very well be the cutest thing I have ever seen to see her trying so hard to get the words out. I don't think it is intentional (Matt would disagree), but it is the next step that a child should make after the initial vowel sounds. We are increasing physical therapy and starting with outpatient therapy as well as Kids On the Move.

Lex is going to first grade soon and I have been trying to block the idea out of my mind. It is so strange to have him in another persons care for that long. I am really going to miss him. I will bring a box of tissues and a locket of his baby hair on his first day to comfort myself. I have signed Mason up for preschool, but I can already see it ending in disaster. I think he is going to have a fit when I try to leave him. He already does that with nursery and other places. The other day I went to a friends house where we left him a few times when Kiya was in the hospital. He immediately gummed onto me and would not let me put him down. I don't think Matt and I realize how much this trial has impacted his life. Matt and the boys are going to San Diego and I think it will be so good for Mason to have one on one time with his daddy again.

Poor Baby

On Friday of last week I noticed some redness around Kiya's g-tube. I chalked it up to her being held by several different people on that day. By Saturday the redness was still present and at 9pm I noticed some puss coming from the stoma. Matt was out of town so we loaded up the family wagon and went on an adventure to the ER at Utah Valley Medical Center. The doctor had a look and confirmed what I was thinking. The g-tube site was infected. He did an ultrasound to make sure that no excess liquid was forming in her stomach, or around the g-tube stoma. He didn't see anything concerning. Lex was such a good boy and did his best not to ask the doctor too many medical questions that no six year old should even know about. Mason started out like a champ, but ended with the usual tampering of medical equipment. In truth they were both really good. We left the hospital at 12pm with a prescription for an antibiotic (I hate antibiotics by the way). I thought Walgreens was open 24 hours so I drove back to American Fork to get my prescription. Of coarse they weren't open so I drove to Orem. That location was not open either so I arrive at home at 1pm with children still awake and no antibiotic. Luckily Kiyas g-tube site is looking great. i am forcing myself to give her the antibiotics and we will take her to the pediatrician tomorrow to check it all out. I feel so lucky that this is our first time back to the hospital since the g-tube surgery.

Here is my top 10 list for why I hate Kiyas a g-tube

1. Most kids can tell you when their full, but if Kiya is too full and we keep feeding her she will get sick

2. If she gets sick you can count on double the vomiting

3. Apparently the tube can become infected

4. If the power goes out I cannot feed my baby- this one really scares me

5. I have to haul a backpack of food everywhere I go and the tubing gets caught on everything

6. If the connection comes undone you will "feed the bed" meaning all the milk goes soaking into a mattress instead of Kiya's tummy. This is also how I ruined my cell phone

7. Sometimes the pump stops working and you have to wait for hours for the Home Healthcare company to bring you a new one

8. You constantly have to play with the rate vs volume ratio to know what your child can tolerate

9. Before I can leave the house I have to remember: backpack, pump, iv bag, formula mix, extension tubing, vent syringe and emergency g-tube backpack

10. #1 reason- Kiya doesn't eat.

Wow I feel better getting that off my chest.