Thursday, May 20, 2010

Disappointment, Gratitude, Joy, and Hope



Ellie's HBOT treatments ended last week with only 3 more to go when Ellie had a seizure while in the chamber.  It lasted for 14 minutes and we spent the afternoon in the hospital running tests, after which they released her.

For all who want to know how effective the treatments have been, to be honest we are DISAPPOINTED (but not discouraged).    We knew at the beginning that it helps some and not others.  We were never given any false guarantees or false hopes but we knew we had to try.  We have met several people who have received great benefit from it and we sincerely rejoice with them.   Dr. Harch was honest, compassionate, sensitive, wise, and truly cared about Ellie and me.  He said he can recall only two others in all the years of doing this that were as resistant to the therapy as Ellie.  He also said that residual effects CAN happen up to two months after the treatments.

In spite of our disappointment, we are also VERY GRATEFUL.  We are grateful for all the loving and caring and generous friends who helped make this attempt possible.  Prayers, financial sacrifices, encouragement, transportation, etc,. etc., were POURED OUT over us like water to a thirsty man.  We are grateful that God has graciously sustained our family during this time of separation, providing for us in times of temptation, providing financially, providing emotionally, etc.  And we continue to be grateful for Ellie herself and the precious gift from God she is to our family (and all who know her).  We are grateful to our other children for their extra maturity, responsibility, and sensitivity during these months.  I am so grateful to my parents, and especially my mother, who took us in on the weekends and let me get some sleep.

We are also experiencing much JOY, primarily in the assurance that God remains on His throne, in control of our lives and the affairs of the universe (and beyond).  But we are also rejoicing in the new experiences of God's person and provision, in the new friendships He has given us in these months, in the things we have learned about ourselves (not always pleasant things but never-the-less necessary things), and in the fact that this chapter is closing and another is opening (beginning with the reunification of the family on June 7th as Vicki and the boys join us at my parents' house in Mobile, AL to begin a summer furlough).

And finally, nothing can take away the HOPE we have in a God and Savior who assure us that the struggles of the present can be redeemed in ways that bring benefit to us and glory to Him both now and in the future.





Ellie on the swing at City Park
                                                                                                            
                                                                                                                        
                  




Sunday, May 9, 2010

I LOVE YOU

The other night after her bath, she was being very "verbal".  A couple years ago (after her bath, when she seems the most "verbal") she said what sounded like (to both me and Vicki), "I love you."  Ever since then we have been trying to get her to repeat it.  A few times in the last couple years she has spoken some garbled verbiage, sometimes sounding similar to "iwuvyu".

However, a couple nights ago, she said (AS CLEARLY AS YOU OR I WOULD SAY IT), "I love you"!!!!  She only said it very clearly one time, but she followed it up (amidst my laughter and crying) with a few less clear "I love you's".

Then Friday, while we were in the HBOT chamber together, she was very clearly intentionally TRYING (unsuccessfully) to form her hand/fingers into the hand sign for "I love you" (which we constantly show to her while repeating this phrase many times a day to her).  Then I would take her hand and make it into this sign and she would smile real big and get happy about it.


StoryLand

StoryLand is a small park for little kids within a BEAUTIFUL larger park (City Park, 1300 acres large, one mile from the Ronald McDonald House where we've been staying--http://www.neworleanscitypark.com/).  Though we have been several times to the larger park, I took Ellie to StoryLand this week.  She was really tired and mostly not interested, except for the slide (we went down 3 times) and the "misting post" (where you press a button and it mists water out on you)--she didn't want to leave that at all.


Saturday, May 8, 2010

Hair and Ballons

I like Ellie's hair more "natural".  Nobody else seems to, though (especially women).  Ellie seems like to like it well enough.


Her purple T-shirt says, "I am CUTE; my mom is CUTE; my dad is LUCKY"















Ellie has really fallen in love with helium balloons.  She loves looking at them but more importantly she enjoys holding on to the string, pulling on them, and working her fingers around the string.  It is a good eye-hand coordination exercise for her.  Oh yeah, sometimes she likes to hold the string with her mouth, too.



 

Thursday, April 15, 2010

Any differences?















Our favorite volunteer cook (and her husband) at the RMH.  Ellie has taken a real shine to her (see #6 below).
                                               

Naturally, people keep asking if the HyperBaric Oxygen Therapy is making any difference at all.  Whether incidental, or directly a result of the HBOT or the Therasuit therapy (or both), here are some differences/changes I have noted in Ellie...



1.     Extends right arm more
2.     Opens both hands more
3.     Puts hands together more often
4.     Works hard at trying to put her sippy cup to her mouth (hasn't been successful YET)
5.     When she saw a dog a couple weeks ago, she reached out for it and was happy to see it (usually ignores dogs)
6.     Two times in a row, at dinner,  she reached over to touch/stroke the arm of the volunteer who cooked the meal, and made good eye contact with her; additionally, Ellie wanted to be fed by HER instead of me
7.     During her last day of Therasuit therapy she did actually take a few steps on her own (with the gait trainer)
8.     Grips things better and more often
9.     A couple of times she has “sung” with me in the car (not real words or in tune, but some sort of real effort)
10.  She works at licking/smacking her lips when she gets a crumb or some kind of food on her upper or lower lips
11. She has splayed her fingers on her high chair tray a couple of times
12. For the last 3 nights she has slept all night long on her side!  (For 4 years she has only slept on her back).

Friday, April 2, 2010

This and that...

                                         Grandad and Ellie doing "floor time"


                                       Got to love my hair!

     Leg immobilizers to strengthen the hamstrings while sleeping

                                           New dress from Aunt Bonnie

Saturday, March 20, 2010

UCP BBQ

On Saturday, March 13th, we went to the fairgrounds where the 9th Annual United Cerebral Palsy was hosting a big BBQ event.  It was a huge affair with thousands of people attending and many people cooking/serving BBQ.  Ellie's Alabama physical therapist Cheryl and her husband Harry served us the best meal at the cook-off.

                                       Gram and Grandad at the BBQ








Daddy and Ellie
on the slide







 




  Harry Thames (cook)






                                      














Cheryl Thames (Physical Therapist)

Tuesday, March 9, 2010

Miscellaneous

                                                         Mama loves Ellie!!

                                                     Ellie loves Chinese food!!















                          Ninja Ellie! (Thanks, Lyndon)

  













                                                                      Bedhead!


Sunday, March 7, 2010

One more week...

...until we head back to New Orleans to start the HyperBaric Oxygen Therapy again.

People keep asking if the therapy has affected me in any way.  Vicki says I look different, but really I haven't been able to detect any changes at all.


             (Scott, after the first 40 treatments)

Wednesday, February 24, 2010

Therasuit Therapy for Ellie


During this one month break from the HyperBaric Oxygen Therapy (HBOT), Ellie is undergoing THERASUIT Therapy here in Mobile. We believe the Lord provided this opportunity because both Ellie's physical therapist in Athens and her HBOT doctor highly recommended that she get this kind of therapy while here, if possible. We had exactly the amount of money needed in our savings account, and the center had an opening during this 3-week slot (2 hours a day, 5 days a week). You can read more about this therapy and the center where it is offered at:

http://www.pptmobile.com/Therasuit.htm

Ellie and I will return to New Orleans on March 14th for the second round of HBOT.  Meanwhile, we are enjoying our time with my parents and with Vicki (who will return to Athens on March 5th). Additionally, I am getting a few speaking opportunities, which I always enjoy.