An Update From Keely's Aunt!! Tiny Kidd is not so Tiny anymore!! :)

Hey this is Melissa Gower, Keely's aunt.  
I am so excited and so blessed to get to be apart of this journey in helping raise funds to provide a wheelchair accessible van for the Skinner family.  I will be posting here periodically with updates on the amount raised and how much needed as well as pictures once we get them into their new van!! 

We are in the works of planning some exciting upcoming events!! Dart tournament, Banquet Dinner, Bake Sale, and Garage Sale!! Excited to get the ball rollin' and these fabulous events planned!! Be sure to keep an eye out to join us!!

If you are visiting here from Facebook, welcome!! Scroll through and read some of the heart touching stories from a few years back.

And here's some more recent pictures of my precious niece and her sweet family!!

Keely's sweet little brother-
Future Protector!!
Peyton

Brother ~ Sister Love!!

Keely's Amazing Parents!!!

Incase you missed it on Facebook:

For those of you who are blessed to know Nick and Misty Skinner, you know that they are amazing, incredibly loving parents. You also know they would never ask anyone for help. As they have been a blessing to us we wish to be a blessing to them. But we can't do it on our own and need your help.

When Keely was just 4 weeks old she developed a deadly form of meningitis and was rushed to the hospital with high fever and seizures which then progressed into encephalitis of the brain. Keely continues to suffer from developmental delays tremors and chronic seizures and is confined to a wheelchair. She is now 7 years old and is one of the most happiest children you'll ever meet!

Nick spends most his time either working or in school getting his degree and the very little time he has off is either spent with his family or helping others. I can't tell you the amount of times he has been there to help us over and over again.

Misty stays at home with Keely and their son Peyton. Although home is not where they spend most of their time. They are in and out of Doctors offices, physical therapy appointments and many times traveling back and forth to Louisiana for treatments and surgeries as Keely grows. Her time has been filled with feedings (through her feeding tube) crushing medicine to give her, measuring and writing everything down.

Never once have I heard Misty or Nick complain but rather rejoice, praising the Lord for the blessing God's given them and never loosing faith continuing to pray for her healing and the Lords miraculous work!!

Through the years as Keely has grown it has brought with it difficulties. As you can imagine there is a large amount of equipment needed to care for her and at a large expense. Misty has always transported Keely from her wheelchair to her car seat and then lifted her wheelchair into the back of her vehicle, drive to the location to then unload the heavy wheelchair from the back and then unload Keely. As you can imagine that is a lot of heavy lifting. And many days she may go numerous places and has to do this at each place she goes. While she was pregnant with Peyton and after his birth her task continued lifting Keely and her wheelchair in and out of the van with her big pregnant belly. Never complaining about it but doing it with a joyful heart.

We would love to help provide a wheelchair accessible van for them. Keely is going to continue to grow and get heavier and it will become increasingly more difficult.

Please join us and help make this possible through prayer, sharing with others and giving.
In lieu of a gofundme account which takes out such a large percentage of the donated amount we have decided to set up a paypal account (where personal payments have nothing taken out of it) and Keely will receive the full amount for which you gave to help provide her with a wheelchair accessible van.

 We are going to call this Keely's Super Wheels!!

You can make donations through the link or PayPal to:
KeelysSuperWheels@gmail.com

Also feel free to email that address for updates or information.
Or contact me, Melissa Gower at 405-501-0997.

We will keep you posted on the progress: amount received and amount needed as we go!

Thank you from the bottom of our hearts for your prayers, sharing this with others and giving to help make this possible!


 Blessings,

Melissa Gower

GREAT NEWS FROM TEXAS!!!!!!!!

It's official, I got the call this morning, we got some of the greatest news we've gotten in a long time.  Through the entire 48-hour Video EEG, Tiny Kidd only had.....wait for it..........TWO seizures!!!!!!!!!!!!!!!!!!  I literally jumped for joy & danced with Tiny Kidd!  The doctor was extremely happy and said that's like a 95% improvement from when she was there last year!!!!!!!!!!! When we were there last year, they observed Tiny Kidd and showed that she had close to 60 seizures in just a few days with 37 of those in one day and they were much longer than they are now!!!!  This means that the medicine she is on is actually doing more good than any other she's ever tried!  This just confirms what we were hoping; we noticed an extreme difference since she was switched to this med and has progressed tremendously. 

There has been days where she has a few more seizures & we discussed that with the doctor.  My concern was that if her daily dose of miralax is even just slightly off, it flushes her medicine right through her before it has a chance to absorb in her body.  He suggested we change the time when we give her the miralax & I'm considering buying a scale to make sure she gets exactly the same dose everyday.  This is extremely important if we want to keep her seizures away.  The doctor said if this works, she may actually get more of the medicine in her system, if she starts to be affected in a bad way we may actually be able to decrease the dose(because she's at the max dosage with a high level in her body).  As she grows and her seizures start to come out more the doctor will then just add another seizure medicine on top of the current one. 

We are super excited, it was a great trip with a very uplifting outcome.  Nick and I want to thank everyone who has been in prayer for Tiny Kidd and ask that you continue to keep the prayers coming!

Tiny Kidd's first experience at Build-A-Bear....SO FUN!!!

Giving her new baby a bath

The drive home....need I say more....

Texas Medical Trip

For those of you who don't know, we have had to travel down to Texas for more testing.  Keely was admitted to the Epilepsy Monitoring Unit at Cook Children's Hospital for a 48-hour video EEG(something they do not have in Oklahoma).  This is to see exactly what her seizures are doing and to determine the next step.  They attach a whole bunch of leeds to her head that monitor her brain waves and watch her on a video camera stationed in the room, where we then get a button that we press each time we think she's having a seizure.  It's nice being able to have the doctor see what we see throughout a 24-hr period and answer any questions we might have or show us things we were not aware of.  Last year, we were here for the first time for a full week of all sorts of tests and were able to learn so much more about our Tiny Kidd and what is happening with her.  The EM Unit has been such a blessing an experience with great technology, specialists, great facility and a wonderful team of doctors.

Yesterday we spent half the day going over medical info & getting all of her MANY leeds attached to her head.  So far things are going well, aside from Tiny Kidd not getting much sleep last night, she is having a great time.  This trip has been a lot more tame than the one we made last year, and we praise Jesus for that!!
We have the first 24-hrs done and are working on the next, I will keep you posted on her progress.

There is ABSOLUTELY NO other way to wear your hair!

And...just like that..she was out (they thought something had happened to her..)

The light test...she had fun playing with it...

                Tiny Kidd....Getting Daddy ready to go to the hospital..

Improvements, More Braces, Therapy, & School

Hello All!  Keely is doing well! She is awaiting her second round of botox injections, we had to reschedule it this week because she started coming down with something so she is set up for this next week instead. The doctor wasn't pleased with the result of the first round so he plans on increasing the dose this next time for a better outcome, he also added another brace to the brace she's already wearing at night so she keeps her leg straight but they will also be used on both legs during the day to stretch out her hamstrings.  She has also acquired some Ankle Foot Orthotics (AFO's) to keep her feet & ankles positioned properly.  She passed her hearing test with flying colors, they don't want to see her back for a whole year...YEA!!  We visited the school she will be attending once she is done with Sooner Start.  We got to meet the teachers and a lot of the therapists and we just Loved everyone!  It was very comforting to see the passion they have for these special kids; and while we were there Tiny Kidd got to meet a few new friends as well.  She just continues to do well in therapy, her head control and trunk control keep getting better.  Her therapeutic feeds have drastically changed, she is actually wanting to eat when we eat, she is able to sit up right & open & close her mouth around the spoon & she is actually swallowing her food instead of letting it fall out of her mouth!!!! We are that much closer to getting that stinkin' tube out of her stomach, YEA!!!  She's gotten so good at using her right hand that I think it has helped her in expressing what she wants to do.  Not only does she continue to learn more sign language but she also expresses when she wants something, is done with something or wants to play games with others.  She has become very expressive in what SHE wants, and for that we are super excited.  I can only imagine what a struggle it must be to be trapped in a body that won't do what you want it to do, and how exciting it must be when you finally break through and find ways to be independent & communicate.

A very sleepy Keely on Easter

Daddy likes to throw diapers at her so she will make THIS FACE....

Awaiting Round 1 of botox injections

Yup.....not comfortable....

Tiny Kidd picked out her own outfit to visit school

 

New Friends

AFO's

Occupational Therapy

Physical Therapy

Speech & Occupational Therapy at Home

Pretending to feed her babies....isn't this precious!

Therapy with an I-Pad