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

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.....

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