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 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.
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.
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).
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.
...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.
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.
For all the people (INCLUDING ME) who were wondering at the beginning of this adventure what I would be doing with all my free time, I have to say, "What were we thinking? What free time?!"
By-the-way, the various photos on this blog in recent weeks of Ellie sleeping do not indicate she sleeps much. On the contrary, I am trying to capture the FEW times when she actually is NOT awake.
Ellie and I have been privileged to meet some really great people during our time in New Orleans. These are people we have grown to love, respect, admire, and draw encouragement from.
We are so grateful for the people God has put in our life through the years who have loved and encouraged us. Some have written in recent months to share with us their thoughts and perspectives, their opinions and conclusions, their observations and adulations...all of which are greatly appreciated, and most of which we feel very undeserving of.
We are just parents. Like any functional parents we want to do what we believe is best for our children--all of our children. Like most human parents, in spite of our unconditional love for our kids, there are also times of frustration, impatience, confusion, anger, irritation, exhaustion, and mistakes.
Ellie is not a "virtual stranger", but rather a full and real and complete daughter--as much a member of the family as any other of our "biological" children. Every functional parent tries to do what is best for each of their kids and that is all we are doing. We couldn't do it, though, without the help of God and the wonderful, generous, loving, caring, encouraging people He has placed in our lives. We are grateful to Him and to you for walking with us on this journey.
After 1 month of HBOT treatments for Ellie, there HAVE been minimal signs of improvement. Her hands are open more often and not as tight when they are closed. She tends to have better use of her right arm than before when she clearly favored the left one. Perhaps her eye contact and powers of observation are a bit better. The doctor also believes her right leg has better movement and that her tone is generally better.
We thank God for providing for this first round of treatments, and we trust that He will provide for us to continue a second and third round after a mandatory one-month break. During this break, we will stay with my parents in Mobile, AL and pursue physical therapy, social security and medicaid benefits, help from some non-profits in getting assistive devices for Ellie, getting her visa situation (for Greece) worked out, and speaking at different churches about the ministry.
A physical therapist in New Orleans has loaned us a "stander" for Ellie to use while we are here, and we are very grateful for that.
Vicki has "stolen" some frequent flier miles from one of our kids and will be visiting me and Ellie for a couple of weeks!! Needless-to-say, we are both really looking forward to that!
