Sunday, March 11, 2012

Loads of Updates

I finally have a minute to sit down and gather my thoughts! January and February were filled with a plethora of Dr. appointments, tests, and illness for my sweet girl. I counted on my calender that we visited Cook Children's Medical Center 28 times. That's insanity.

I'm taking two very intense classes this semester that have also required a lot of my time and energy. Taking classes as an adult is a whole different ballgame! And taking classes that also relate directly to my own child sometimes makes my head spin. I feel like my brain has been on overload, and I've sort of buried my head in the sand regarding some of Kendall's most recent health issues.

 Also, for the first time since Kendall was born, Justin and I took a vacation TOGETHER!

There was a lot of planning involved to make that happen. It was a group effort between both sets of grandparents and our nurses. My dad spent over a month every three days learning how to change out her insulin site, and work all of her equipment. He's 73...but had the desire to he did! Our family all pulled together and made sure my kids (and dogs) were happy and taken care of.

We had an amazing time skiing and relaxing with my sister and brother in law for 5 days and 4 nights! Our view every morning was phenomenal:

We had a great time shopping and site seeing in downtown Park City:


The snow was great, and Justin and I had our ski legs by the end of the trip! Kristin and John already had theirs!

There were a few pretty entertaining falls, but thankfully no broken bones. And the company was great.


It was a much needed, and very enjoyable time! We were anxious to get home and see our sweet babies though. Unfortunately, we came home to this:


Poor Kendall had a runny nose the whole time we were gone, but no fever. By Wednesday of this week she continued to be super cranky, so I took her to our pediatrician. Low and behold she has strep AGAIN.

The cute glasses she's wearing in that pathetic picture are brand new from her last examination under anesthesia. Her new prescription also has a bifocal. We're hoping to see major improvement in her vision very soon. Also, it was determined that her eyes have grown enough for IOL's. That means in the next 6-12 months she will be able to receive the lens implants we have been anticipating since she was 5 months old. This definitely presents the possibility of MAJOR vision improvement. And smaller glasses! Oh, and check
out her new sunglasses:


Kendall's Sleep Safe Bed finally arrived also. I'm proud to say she has napped in it, but has not slept in it at night...yet. Baby steps. We really like it. So does our skinny lab, Chloe.  It is much nicer than I thought it would be for a "hospital bed." It has a wireless remote that brings it up and down. This will certainly help with her congestion. The only problem is, she hates the sound of the button clicking and it moving while she's in it. We are working on ways to make her less sensitive to that.

We have finally ordered her power wheelchair. I didn't want to jump the gun on ordering it because it's such a large and expensive piece of equipment. It will also require us to adapt our van and make some additional modifications to our house. We are considering allowing Kendall to ride the bus to school when it comes in. All of these things will be pretty big changes, so I wanted to make certain she was ready. It was determined by her team that she is ready! So...this summer should prove interesting as Kendall learns to drive. By the way, it is all black with pop star pink rims! I plan to add some vinyl decorations to customize her ride too!

We finally met with our Neurologist regarding the Orthopedic Dr.'s recommendation for Botox. It is now scheduled for April 12. We are going to have it done under light anesthesia. He will do her psoas, which goes pretty deep and three other locations in her legs. He also has plans to do her left elbow and shoulder, and hand. We are leaving her right hand alone. (We also have night time and day time splints on order from our orthotist)  During that visit, we shared with our Dr. about Kendall's recent bladder issues. He immediately blamed the Artane (she was on 3mg 3 times a day for her Dystonia) for the urine retention. He suggested we wean her off of it quickly, and see if the benefits outweigh her having to be catheterized every day. The verdict is still out on that one. But I was very thankful to have a Dr. look at the big picture. I feel like we could have avoided all of the drama last month if we had seen our neurologist first.

We also visited her Endocrinologist who reported her Hemaglobin A1C to be a 7.2. This is up from her last one, but not terribly bad. We will be tightening the reigns on her insulin pump parameters, but didn't want to make any major changes before we left on vacation.

And's that time of year. Kendall's ARD is scheduled for March 27. Her AAC demo is complete. We have decided on the PRC device with the MinSpeak language system. Since her vision is changing, we aren't going to set anything in stone yet on mounting and placement. We are adding a key guard for the eight squares she's been working with. I kind of feel (much like the power chair) that when we receive one that is strictly for her, we can customize for Kendall...using it at home and in different environments...eventually she will get the hang of it!

Whew, that was a lot, and I'm sure I left some things out. The kids are on spring break this week, so I'm excited to take a break with them too, hopefully enjoying the beautiful weather and healthy kids :)


Debbie said...

It takes a village to go out of glad to see you have the support and went for it! Yay!

Hope she is feeling better!

MeghatronsMom said...

I'm wore out reading this update, so can't imagine how you feel! Jealous of the vacay, but can't think of anyone who deserves it more. Hope girlie is feeling better.

Barbara said...

Thanks for the updates! Happy to know that she will have power soon!