TINY KIDD...BORN AGAIN!!

At 4 weeks old, Keely Skinner almost lost her life. Keely was rushed to the hospital with high fever and seizures. She had come down with a deadly form of Meningitis (severe infection located in the fluid around the brain) which then progressed into Encephalitis (which is a severe infection located directly on the brain). Keely continues to suffer from developmental delays, tremors and from a chronic seizure disorder, having multiple seizures every day. At two years old, Keely has severe physical limitations, she is still at the stage of a newborn 0-3 months. Through all life’s challenges, Keely remains to be the happiest, most loving child; inspiring and touching the lives of everyone she meets.

Wednesday, March 30, 2011

Busy, Busy, Busy.....

I apologize it's been so long since my last post. Things have been so hectic around here, I'm not really sure things will ever return to a normal schedule....what's really normal anyways, I'm not sure I even know anymore. Here's a brief update of what's been happening:

Tiny Kidd had her first round of botox injections in February. The botox seems to be working well in the areas they injected her. She had a total of 8 places they injected her and she took it like a champ! The doctor's focus for right now is her pelvis and hamstrings, to loosen them so it will offer more seating positions to prevent her hips from further deformity. So far the only side effect she seems to have from the botox is it effecting her sensory. The encephalitis damaged her sensory causing her to have a sensory disorder, which if not controlled is very traumatic. When she's having sensory problems, every little thing freaks her out, movement, sounds, lights, etc. It sends her into, what I like to call,' freak-out attacks.' It looks like she is having a panic attack & starts to hyperventilate and the only way we can calm her down is deep pressure, holding her as tight as we can to our bodies and keeping her arms & legs pulled in. Her seizure medicines have mood stabilizers in them and seem to control the sensory problem the majority of the time; when she got the botox that seemed to reverse it causing her attacks to come out. The first week or two was the worst for her sensory and then started to taper off and now she's only having issues here & there & they are not as extreme. The botox lasts about 3 months & the phenol about 6 months. She goes back to see Dr. Wright for a follow-up in a couple of weeks. We met with the Orthotist who fitted her with her fabulous brace she gets to wear every night while she sleeps, and will fit her with any future braces.

We were supposed to go see her neurologist in Texas for another video EEG in February, but unfortunately we had to cancel for two reasons. We were having insurance delays and Nick's grandma passed away, so we made a last minute trip to Missouri to be with family and say our goodbye's. Even though we went for a very sad situation, it was a wonderful trip getting to be with family that we don't get to see very often and a time for Tiny Kidd to watch her daddy & Uncle Jeff act like little boys again & re-live their childhood...Sadly, the drive home for Tiny Kidd was miserable cause she had developed an upper respiratory infection which she then passed on to me the next day from all the coughing & sneezing she did in my face.:P On the upside, Tiny Kidd got a new baby cousin the day we came home, we just had to wait til we were better to meet her sweet little face.

So we are in the works for a new appointment to go back down to Texas, I will keep you updated. Therapy is going well, she's had some really good moments of tummy time and strengthening her trunk control. The wheelchair situation is still a work in progress. She's been to see the eye doctor, all is good! He could see that her eyes like to drift but because she can focus them back is good (they drift when she is spacing or very tired), she just has to work a little harder to keep her eyes in place due to the damage her brain suffered. He said it's when they get stuck is when we should be concerned, so that made us feel better. We attempted a Hearing follow-up today.....Tiny Kidd was not happy, it was nap time so we had to just leave & reschedule it. We don't anticipate any problems with her hearing, she seems to hear everything. She had a sedated ABR in 2009 (more extensive hearing test) and it was perfect, but because she had encephalitis they just want to continue following up with her. We met with the school board on monday to start the process of transitioning Keely from Sooner Start into the school system by age 3. We will go visit the school in a couple of weeks to check out how things are run and what is offered for her. I'm very anxious about this, I think it will help me with the idea more if I see it for myself. I will fill you in more on this situation after we visit the school.

Enjoying the outdoors before we got one more snow storm

Must be an intense movie.....

The 3 Two Year Old Princesses

Everyone should ALWAYS have one silly photo of themselves

Road trip to Missouri

Tiny Kidd meeting her new cousin, Serenity Piper
she makes Tiny look huge

And FINALLY, we have that fabulous brace I mentioned....Tiny Kidd's Bionic legs....it looks completely uncomfortable but she acts like it's not even on her.....thank heavens...

Look for more photos and videos to come soon.....

Friday, January 14, 2011

New Doctor.....New Information

Keely got to see a new specialist this week, Dr. Wright is a Physiatrist / Rehabilitative Medicine. a Physiatrist is a doctor of function. His focus is on things like, Keely's mobility. He upholds his reputation of being a wonderful doctor. He took his time with her, was very educational, and very hands on. He immediately started tweaking the chair that we have right now so she would sit better and help with her tone. He tested her whole body putting her in different positions, testing her spasticity (Spasticity: A state of increased tone of a muscle (and an increase in the deep tendon reflexes). For example, with spasticity of the legs (spastic paraplegia) there is an increase in tone of the leg muscles so they feel tight and rigid and the knee jerk reflex is exaggerated.. www.medterms.com). He wanted her to have an x-ray of her spine and her hips, he was concerned since she always leans to the right. We were there for 3 hours because x-ray took longer to get there but Dr. Wright came back from his meeting right as the test was done, so he just had us wait so he could review it and decide on a plan. Unfortunately, things were not normal......he showed me her hips have already started to curve to the right, her bones are not where they are supposed to be thus starting the deformity process. Her spine looks good right now but he said it is already showing a slight curve.

His plan for Keely: He is most concerned about her hamstrings, they are so tight, that is one of the things that is contributing to her hips curving, along with poor posture. He wants to do some injections to loosen them up and then put her in braces. He also wants to inject a little bit into her hand to help open it up. Then he will think about her feet and putting those in braces. He also referred us to a specialist he trusts for a seating clinic. We discussed the wheelchair we had ordered, and after he consulted with the specialist about Keely's issues, the specialist told him the chair we ordered is not gonna be enough for her especially on down the line. So, we have canceled our wheelchair order to explore other options and continue to pray about the situation knowing that God has been guiding us the whole way. Keely needs all the support she can get in a chair for secured posture and now we finally have some guidance in that area, Praise Jesus! Nick and I ask that you guys be in prayer about it as well, along with all of Keely's other ventures.

So we are really excited that God has sent Dr. Wright into Keely's life and we pray that he will be a blessing. Most of his patients have Cerebral Palsy so we trust that he is very knowledgeable in his field. Keely starts her first procedure of injections in February so be in prayer that all goes well and there are no complications.

So our precious baby did so well being at the doctor for so long.......and yes there's the barf bag again!

Monday, January 10, 2011

Goodbye 2010....Hello 2011!

I don't know about you guys, but 2010 felt like it flew by faster than ever. Every time we turn around another week has disappeared and so we begin another year....

Tiny Kidd is growing beautifully! Therapy is going well. Along with her tube feedings, we are continuing to do therapeutic feeds (which are: feeding her a few, small bites of food by mouth to try to train her how to eat, swallow, etc.). Her seizures, well.....still a work in progress. They've been increasing in number and in strength lately, so her neurologist in Texas has scheduled her for another inpatient video EEG for in February. Tomorrow she has an appointment with Dr. Wright (referred by her okc neurologist), to help with the stiffness in her joints and braces for legs & hands. And supposedly, her wheelchair has finally been ordered! This has been a 10 month long journey from the time we started demoing chairs; we had so many stinkin' hoops to jump through because of insurance...it was ridiculous! We are trying not to get our hopes up about it coming soon (cause each time we did, something happened to delay the process)....but secretly we are cheering & jumping for joy!

In closing up another year, we praise God for his one and only son Jesus Christ, for blessing us with precious Tiny Kidd and so many wonderful family and friends, and remembering loved ones we've lost . So from the Skinner family, we hope everyone had a very Merry Christmas, and we pray wonderful blessings for everyone in 2011!!!

Our Shining Star

Aint They the Cutest things you ever seen!

Christmas 2010

The New Style Trend for 2011

In Loving Memory of April Gower

Feb 4, 1978 - April 3, 2010

Aunt April & her 'Apple Bits' 2008 (Keely- 1/2 day old)

We will Forever miss our April.....May you be at peace in the arms of Jesus

Therapy In December

Keely's First Laptop....Thank you Emily!!

Yes, her arm is in a barf bag....she loves it...we take it everywhere

(I promise, it's never been used ;))

........And She's Out.........

Wednesday, December 15, 2010

Cerebral Palsy

Last week Keely had an appointment with her neurologist, here in the city, and we learned what her actual diagnosis is. Keely has Cerebral Palsy and evidently has been diagnosed from the very beginning (2yrs ago) with that. I don't know if it was a lack of communication or misunderstanding on my part but now we have been confirmed. This was something I had discussed with her therapists in the past as I was learning more about the disability. I didn't realize Cerebral Palsy was an overall umbrella term, referring to an injury to the brain at birth or shortly there after causing a lack of progression. There are several ways a baby can have a brain injury and that ends up falling under the one term, CP. After doing more research on CP, I realized that I was highly uneducated about it because everything that I read was everything that Keely has. If I had known what CP really was, I would've known that she had it all along. Needless to say, I felt a little dense when her neurologist said she's had it the whole time and she puts it in her chart every time she sees Keely.....

On the other side, her neurologist in Texas increased her seizure medicines again after seeing her blood work. The two doctors were going to touch base and discuss next steps in the whole seizure dilemma.

So all in all, Tiny Kidd is doing well (except for sleeping a little more since the med increase), her neurologist was very impressed she was using sign language to potty train herself and she even got to hear her attempt at saying 'I Love You.' The doctor is going to refer Keely to Dr. Wright (I don't remember what type of doctor he is, it's a strange name) for things like the tightness she has in her joints and if she needs braces for her legs. I have heard wonderful things about Dr. Wright from all of her therapists and her other doctors so that makes us feel better that they say he is a wonderful man.

Sorry no pics this time, I will try to get some posted soon.

Monday, December 6, 2010

Med Changes, Peek-a-Boo, 'I Love You,' & Friends

The past couple of weeks have been pretty busy with therapy, the holidays, and family visiting and Keely continues to learn new and exciting things. Keely still continues to have several seizures a day and her Neurologist in Texas just increased her medicine about a week ago. So far not much change on that, the doctor wants to do bloodwork again and check to see where her levels are at. Tomorrow, after therapy, she goes to see her Neurologist here in the city, so I will keep you posted on both of those things.

Keely has recently discovered how to play 'Peek-A-Boo!' We are so excited; she managed to grab a hold of her towel, raised it up to her face covering her eyes, wait a few seconds and then lower it from her face, we say 'Peek-a-boo' and she gets so excited then covers her eyes again! She's playing it all the time, I tried to get video but she got sidetracked so I will try again.

Tiny Kidd has become very vocal and at times it's like she tries to carry on a conversation with you. We say 'I Love You,' to her about 5000 times a day and she has been trying her hardest to say it back!! She does 3 distinct sounds and has gotten so close to trying to form the 'L' sound! We do have video of this below. We are soooo proud of our Tiny Kidd!

We had a great time Saturday night watching the big football game with friends. Tiny Kidd loves football but I think she had an especially great time when all the boys would jump up and scream, she would crack up and laugh so hard at them, it was awesome!

Hangin' out with Friends

Paps & Meemaw!!

Well Keely got to play with her Paps and Meemaw this past week. They came down for a few days from St. Louis, MO to visit us. We were so excited to see them, we haven't seen them in two years and they were shocked to see how big Tiny Kidd was (and how much hair she has..;). We had a blast enjoying their company and hated to see them leave, the trip definitely wasn't long enough. Can't wait to see them again!

Meemaw & Keely