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!

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.........

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. 

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

                                   Paps hard at work on his vacation

                                                    So Sweet....

                                                   WEEEEEE!!!!

                                 Daddy & Paps admiring their light job

                                 Eating yummy chicken at Eischens

                                 The Chesapeake Christmas Lights

                        This reminds me of the Disneyland Electrical Parade

Warm November Weather

The joys of living in Oklahoma...you never know what the weather will be like.  We had several days of cold weather and then suddenly, the past few days have been in the 70's....just beautiful!  So yesterday we took advantage of it and spent some family time outside.  Keely got to enjoy some great play time in her stander watching us hang Christmas lights.  We were so proud of her, she hit an all-time high in her stander, managing to stay in it for over 2 hours!!!  (This is huge considering it was always a struggle to keep her in it for 20 min).  She was just enjoying herself being outside, playing, watching mommy & daddy be goofy, and visiting with the several neighbors that stopped by.  We decided this year we wanted to be more in the holiday spirit since last year Tiny Kidd was in the hospital over Thanksgiving from her G-tube surgery and then in the ER over Christmas, and she was so drugged from all the seizure medications she was on she couldn't enjoy much of anything. So, last year, the whole season was just full of stress; this year will be different, she is more alert and able to enjoy life a little better.  So we started by hanging a few more Christmas lights this year thinking Tiny Kidd would enjoy them....And She DID!  Her face LIT up and she got so excited when she saw the lights!  It made us feel so good because she is enjoying something normal kids enjoy and she's able to show her enthusiasm like a normal child. 

The good weather continued so we decided to have therapy outside this morning.  She got some more time in the stander and got to play with Lindsey (Occupational Therapist) and Jill (Speech/Language Pathologist) using a communication device that allows Keely to understand and make choices.  She got to explore her environment while she played games, using the buttons on the device to tell the girls specific commands.  On a side note, I have been teaching her more sign language and last week she picked up a couple more signs that she tried to mimic back to me, even using the 'All Done,' sign in relevant situations!!!!  Tiny Kidd is sooo smart and she is trying sooo hard to show us!! Good Job Tiny Kidd!!

                         Being an Excellent Christmas Light Supervisor

                      What do you think Mom....Should we keep him??

                                 
                               Darn Cute Daddy!!  Two Thumbs Up!!

             Bad picture....Still a work in progress but you get the gist

 

THERAPY

                                             Playing in the Leaves