Friday, July 17, 2009

Home Sweet Home...and HOPE

We are home. Kendall is doing remarkably well. She's back to her old self again. Smiling, laughing, singing. Her glucose and ketones are all where they need to be. Praise the Lord!

While in the hospital...Kendall rolled for the first time. I cheered, jumped up and down, and hugged our nurse!

There is one Nurse Practitioner there who has never given us anything but bad news and negative thoughts. By the way, she has never even examined Kendall. She doesn't know her personality, her eating abilities, or her true overall tone. Yesterday morning she told me we may need to consider a G-button to administer Kendall's medicine more easily. Of course this made me come unglued. Kendall eats. It may take a while, but she eats, even her medicine, eventually. Putting a direct line to her tummy "to make something easier" is out of the question. Completely out of the question. Again, eating is a strength for Kendall. How dare she? She also said early on she thought Kendall would need a trach tube to control her saliva. By the way, she doesn't even drool. I'm sure I'm being too hard on her. I'm sure she is just basing this on the statistics of children like Kendall. But Kendall is the exception. This nurse doesn't know that. But we'll show her.

Yesterday was a bit chaotic. We had to get her home, unpack, deal with the dogs, prepare her formula with our new scale, drop off prescriptions, get to the grocery store, etc. When I was getting her medication laid out for the week I realized the pharmacy at the hospital still had our Vigabatrin (since its not FDA approved and takes 1 week to get, I panicked!) Justin ran back up to Cooks to pick it up. Around 9:00 my "nerves were shot." So I poured a glass of wine and did a puzzle at the kitchen table with Kamden...then I was all good! I've missed my precious Kamden.

We were so blessed this week with the BEST Registered Dietitian. She was so sweet, soft-spoken, calm, and patient with my neurotic self. She gave us some great recipes to try and when I checked e-mail this morning, she had already e-mailed me a welcome home note and reminded me to e-mail or call her if we need to tweak anything. Its very comforting to know we're not alone! We CAN do this. I know it. I also have a good feeling about seizure relief. Each day seems to be a bit better than the day before. I pray this continues.

If it doesn't... in a month we will start taper off the Vigabatrin and begin adding Banzel. Ironically, one of my best friends is a pharmaceutical rep for the company that makes Banzel and she has been telling me about it when it was still in the pipeline. We shall see...

This week I read "Blue Sky July" by Nia Wyn (suggested by Calleigh's mom) It helped get me through my hospital insomnia. I will leave you with this quote regarding this mother's early experiences raising her son with Cerebral Palsy. She paints the picture of my emotions with Kendall perfectly.

"He gives the world an unbearable intensity.

His blindness gives me new eyes to see, new ears to listen to the languages of nesting birds and echoing arcades, new understanding.

Pain mingles with a profound sense of beauty. Carrying him makes everything burn brighter.

As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore, and near the circles of mothers anxiously comparing milestones at the school gates, I see how we live in a time where normal is never enough,

and we are never full.

Joe gives me insights I could never have understood without him, and he gives me heartbreak.

To separate these two responses would be impossible. He is equally beautiful and terrifying."


Cjengo said...

Glad you guys are home, and that all is well. I am very impressed at the picture of Kendall holding her bottle, that is so awesome!

Joshjohnnaben said...

I am so glad you are home! We will continue to pray for Kendall and you! GOD is an awesome GOD and your sweet family continue to make him FAMOUS!

Jessica said...

Oh Jocalyn....what GREAT news!! Like I said, Kendall will keep improving. I believe, I believe!!! I would have punched that negative nelly in the eye. I'm so glad that you didn't let her get you down though cause then I would have punched her again, ha!!! I'm glad your Kamden is back home with you guys. Your closing quote brought tears to my eyes and goosebumps to my arms! Lots of love being sent your way.

Caroline said...

Ah, that's such a cute picture of her holding her bottle- what a clever little girl.
Glad you are home; I know how hard it is and how torn you feel when you need to be in hospital, but have other children :O(

Hope is on vigabatrin too. She's on 500mg a day, which to me seems a lot considering she only weighs 5.5kg.
Her consultant plans to take her off it in September and give her something else, though I think I might be reluctant to do so because she seems to be doing so well on it (seizures almost under control and progressing developmentally again).

Lots of love from Hope and I

Bronx Cataldo's said...

Glad you are home its much easeir at home than being in the hospital. If she wasn't eating or drinking enough and not putting on weight I would go with the tube but Kendall is doing great don't worry about what that thing said.
Wow the words you posted from the book its Finnian word for word wow thats unreal. Finnian is on Banzel it has made improvment in him but we are still having grand mal seizures.