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.