Thursday, August 25, 2011

Vacation Pictures!

I've totally dropped the ball on sharing our amazing vacation. Life takes over sometimes...but I definitely want to document the trip with a few pictures, and a quick video! My babies are such beach bums!

This first video was taken the day we arrived in Destin. After a long over-night drive (and a detour since I entered the airport shuttle driver's address in instead of our rental...long, long story, but made for some good laughs!) Kendall didn't waste any time at all getting used to the water, sand, and sounds. She enjoyed it immediately!

We decided last minute to take some family pictures on the beach! I'm sure that was a comical sight for onlookers.



I wanted to take more pictures on the beach with Kendall, but stressed out way too much with my camera and phone being in the sand. I'm the one with the sensory issues when it comes to sand and salt water.














I want to give a huge thanks to my sister Kristin for a wonderful, amazing, and memorable trip. She paid for my whole crew to stay in a beautiful condo for a week. Our amazing nurse, Angie, came too. She won't let me post any pictures of her...but I did sneak one in at the top of her with the rest of our family! Having her there allowed me to spend some time with Kamden doing fun things...and gave me some much needed alone time on the beach!

Two years ago when we went to Destin we were in a really bad place. Kendall was seizure free on the Ketogenic Diet, but we had multiple challenges that we would face the week we got home. My mom was just about to undergo her long battle with Cancer and Hep C. I was in the throws of deciding whether or not to quit my job. Kamden was always so worried about his sister that he would cry himself to sleep. Needless to say, we have come a very, very long way. This trip was a celebration of life. Next year, we hope to be able to take everyone again. Maybe with enough notice, our husbands will be able to take off work and join in the fun! I love our family, and am blessed to truly enjoy their company the way I do. Our family game nights were a hoot!

Life is good.

Wednesday, August 24, 2011

School Days!




My babies have had a wonderful first few days of school.

Kamden loves the independence Intermediate school offers. He found his classes like a champ, mastered the lockers, and is enjoying making new friends from other schools. He's pretty easy going and not much phases him. The only concern I have is his inability to keep a binder organized! Hopefully this year will be the year he gets it together! But I won't hold my breath!

Kendall held a crayon on her first day of school and colored with it. She's even been particular about which color she uses. Monday they talked about blue, and she would only color with the blue crayon! Tuesday she picked the pink crayon when asked what color a pig should be colored! They do a "Random act of kindness" award, and Kendall received the first one. When the teacher told me, I thought someone did something nice for Kendall...but that wasn't the case. SHE did something nice for someone else! A little boy was crying and Kendall reached out and gave him a comforting "pat." I love that she's showing compassion at three years old! Her brother was the exact same way at that age. I am so proud of her.

Things are going really well. My classes start this Thursday, so all of us will be back to the grind. I do better under pressure, so I'm ready.

Sadly, Kendall's Physical Therapist is quitting. I can't even begin to tell you how upset this makes me, but like everything else in life, we carry on! Today we have an appointment at the Cook's Therapy Center near our house for an evaluation. This therapist was our first PT when Kendall was five months old before we started doing home health. I think going to a center will be a nice change for Kendall too. They have new equipment and other things to offer her that we don't have at home. The fact that the new facility is within a mile of our house makes it nice too!

More busy days ahead, but everyone is healthy and happy, so we welcome them.

Sunday, August 21, 2011

Home from Vacation...Back to School

We arrived home from our amazing vacation late last night. Today has been packed full of back to school preparations. Both of my kids are super excited for their new school year.

Of course, I haven't had a chance to go through all my vacation pictures yet, but I will definitely post some with a vacay recap when I have a chance.

Instead, tonight I wanted to share with you a poem Kendall's TVI wrote for about her and sent to me a while back.

Our family feels so lucky to have such an amazing team of people working with Kendall this year. The dedication and love shown by our nurse, teaching team, vision team, and administrators has made the beginning of this year for Kendall (and me) so easy. We are truly grateful and thankful that there are people out there who are ready to fight for our girl and genuinely care about loving her for who she is!


The Masterpiece

There’s a tiny piece of heaven who will breathe Earth’s air tonight
She’s the gift you prayed for when you prayed with all your might.
Straight from God’s own hand, a vision of His heart
Flawlessly designed by angels; she’s a perfect work of art

She’ll have mommy’s soft skin and daddy’s button nose
Perfect in every way from her head to her toes.
With big brown eyes and a dimpled chin
Curly brown hair and a sweet impish grin

What’s that you say…her legs are not strong?
Oh no, God said, you’ve got it all wrong
She will dance in your heart and soar with the wind
In her own time, you’ll be amazed at the races she’ll win.

Her eyes... you say, they cannot see?
But, she sees past the sadness and into the hearts
Of people who love her and make her a part
Of the beauty around her that she’s felt from the start.

Her voice is silent and you can’t hear a word?
Yet, she sings with a rhythm of a soft fragile bird
She speaks to your soul and whispers her love
On the wings of an eagle, with the grace of a dove.

A child so precious, and uniquely your own
Chosen by God, a gift from His throne
A little piece of Heaven meant all along
To fill your life with her strength, her sight and her song.

For Kendall Briggs
With love, Terri Limon

Wednesday, August 10, 2011

Sibling Music Therapy

I am so blessed. This is my everyday :) (scroll down to the bottom to pause blog music)

Thursday, August 4, 2011

Calm After the Storm


Yesterday, Kendall's examination under anesthesia went well. They were able to avoid using a breathing tube (thank you Tera!) so she didn't need a steroid, and she didn't have to stay for 24 hours of observation!

Her prescription changed a bit, and they got a good read on her pressures. Unfortunately, they were extremely high. Her right eye was 39 and her left eye was 28. Normal ranges are between 18-22. Kendall has thick corneas, so that may be part of the problem. The other obvious thing associated with high pressures when a child has had cataracts removed is Glaucoma. Our Pediatric Ophthalmologist is discussing it with a Glaucoma Specialist he works with to form a plan. Kendall will more than likely start eye drops. If that doesn't work, we face the possibility of shunt surgery. Which sucks. Her eyes are growing though, so that's a good thing. Her right eye is ready for an IOL, but her left eye still needs to grow a bit.

She came home, had physical therapy, then slept for 4 hours. She also enjoyed a swim with Nonna for the first time in a few days too. She slept well last night and awoke this morning without any hives. Thank goodness. I just laid in bed with her for about an hour this morning soaking in her sweetness when she's not sick. It's good to have my girl back.

Thanks for all your thoughts and prayers. She's definitely on the road to recovery, just in time to go on vacation and start school.

This past week was yet another reminder to take it one day at a time. A friend shared this quote on Facebook that another friend on the CP board shared. So.Very.True.

"For all we have been through, there is so little I know for
certain except for maybe this: Motherhood is about raising--and
celebrating- the child you have, not the child you thought you
would have. It's about understanding that she is exactly the person
she is supposed to be. And that, if you're lucky, she just might be the
teacher who turns you into the person you are supposed to be."
-author unknown

Tuesday, August 2, 2011

Hospital Visit X 4

Some months I think it would just be better if we rented an apartment next to Cook Children's Hospital. This past week it has been our home away from home. It's only 25 minutes from our house, but that drive gets really old. Especially in 105 degree heat with a child who screams when you stop at a red light or stop sign.

I hate to sit here and complain, but that's what comes naturally when I don't sleep. And I haven't been sleeping. Because Kendall hasn't been sleeping!

She short of it is this: Urinary Tract Infection, put on antibiotic, developed hives, developed high fevers, blood sugars out of control (we're talking over 500 with high blood ketones)changed antibiotic, determined she has a penecillin allergy, restless nights and inconsolable crying. Blah blah blah.

I've told her medical history a thousand times over (because I forgot to print it out before we left.) Then today she had a two hour pre-op appointment for her Examination Under Anesthesia tomorrow morning. I had to go through the medication list, reasons for turning down the IMBG scan, Mitochondrial debocle, etc... with the anesthesiologist. I did all this while Kendall screamed and yelled the whole visit!

My brain is fried. But hopefully we will find out tomorrow that her eye pressures are in a safe range, and will leave with a more accurate prescription. We then plan to drop off her Rx and hopfully get new glasses and sunglasses before our vacation to the beach. (or at least before school starts.)

The biggest upset for me the past few days during my drama-filled-no-sleep hours, is that Aetna has declined Kendall's wheelchair. She's grown out of her current one, and they are now saying it is not medically necessary and more for convenience. Whatever. Am I suppose to let her lay in bed all day? By the way, she sleeps in bed with us, is getting too tall, and rolls too much for any of us to get any rest. We are also in need of a Sleep Safe Bed, but I'm too beat down to start that process!

Please keep her in your prayers tomorrow morning at 5:30am (being Type 1 Diabetic has its advantages, she's the first patient of the day) as she goes under general anesthesia. Hopefully the breathing tube will not cause its usual trouble in our sweet girl.