A HUGE thank you! And an update.

I don't know how to even begin to say thank you to those who have donated to the fund raising effort taking place for Ellie.  "Thank you" in itself seems inadequate but I will say it anyway, thank you all so very much!  Charles and I have been blown away by the support we continue to receive through all of this.  

A special thank you to our friend Julie Romano for setting up the website http://gfwd.at/1rDJjF2, updating the website, and heading up the fund raiser.  Many others offered to do the same for us and we are very appreciative for all the offers to help our family financially.  Our sweet friends the Romanos know all too well what it is like to have a sick child at Texas Children's Hospital.  Their son Johnny was diagnosed with leukemia when he was 7 year old.  In 2008 Johnny relapsed and spent 120+ consecutive days in Texas Children's Hospital.  We prayed hard for Johnny after his relapse and his story weighed heavy on our hearts. 

Then in September of 2008, while Johnny was in TCH battling the cancer, Hurricane Ike hit, devastating Galveston.  We evacuated to my parent's house where Charles and I spent almost 2 weeks living in a travel trailer with our 2 dogs and 2 cats.  Eventually Charles came back to stay with friends in League City so that he could return to work, but the city of Galveston wouldn't let the residents return home.  A couple times they announced they would let residents return home and would let people on for a few hours during the morning but then would shut the island down again, stating it just wasn't safe enough to continue allowing people to return.  I missed those opportunities to return home so when they again announced they would allow residents to return home, I decided I needed to be there at 7 a.m. to make sure I was allowed onto the island.  

The evening before returning home I read an update online stating that Johnny wasn't doing well and that they weren't sure he would make it.  Because I was planning to leave at 3 a.m. to return home, I stayed up all night praying for Johnny and his family.  I remember the drive home so clearly, praying over and over again for Johnny and his family.  I knew the majority of those on the island had lost everything they owned and yet those possessions paled in comparison to Johnny's precious life and what his family was going through.  Johnny entered heaven on that day.  My prayers remain with the Romano family as I know the pain of their loss will always be there.

The Romanos have been such a blessing to so many people following Johnny's passing, raising thousands of dollars for pediatric cancer research.  And now they are a blessing to us in our time of need, as are so many others who have continued to support our family through all of this.

It was a difficult decision for Charles and I to accept financial help.  We very much wanted to handle everything on our own, despite numerous offers that family and friends made to help.  And even with us saying, "There's nothing we need but prayers" there were people who quietly helped us out anyway.  Ultimately we came to realize that if we want Ellie to continue to get the care she needs going home from the hospital and especially into the next calendar year, then we needed to allow others to help us.  And we are so grateful to everyone who has donated, helped get Ellie's story out there for others to see, and for those who continue to pray for Ellie's healing.  Thank you, thank you, thank you!!!

And now for an update on how Ellie is doing:

Today marks 6 weeks since her stroke.  Since my update last week, Ellie has made some pretty major improvements.  My last blog entry focused on her therapists reporting that they felt at a stand-still with her therapy because she wasn't showing any initiative to attempt to do things on her own.  Well, without the help of the medications that were discussed, Ellie has suddenly started to show a great deal of initiative.  In fact, she is down right insistent on doing the things that she wants to do.  

She is no longer satisfied to just sit still.  She is constantly rolling, trying to sit herself up from a lying position, trying to pull up to a stand (she can't yet but she sure tries), and playing appropriately with all kinds of toys.  Once you help her to a standing position she is ready to walk to wherever it is she thinks she needs to go.  She can't stand or walk independently but by the way she tries to take off, she seems to think she can. Her right leg continues to grow stronger and she can move it in a walking motion as long as she has someone holding her up for balance and support.  It's actually a constant, exhausting job to keep her from injuring herself at this point and yet it's a wonderful thing to see her wanting to do the things she used to do.  I'm flat out breaking my back (it doesn't help that I'm pregnant) trying to help her stand and walk all the time and yet I am thrilled to do it because I can see how much she is improving and I want to encourage her to walk. 

Although she still has no speech, her understanding of what we are telling her has improved a great deal.  She now follows simple directions like, "Put the toys in the box", "Build a tower with the blocks", and "Can you give me that?"  If you show her a ball and a car and say, "Which one is the ball?" she is likely to grab the appropriate item.  She also has regained an opinion as to what she does and doesn't want to do.  Yesterday I was pushing her in a little pink car when she saw a tricycle that she wanted to ride.  She threw the biggest fit until we agreed to let her ride it, even though it meant she had to do her speech therapy while on the tricycle.  

Every day they give Ellie a few sips of water and with each sip she coughs and sometimes chokes.  And she has decided she wants nothing to do with thickened liquids.  Which means she is stuck with the NG Tube for now.  She has improved with being able to eat solid foods.  At first I didn't understand how she could handle solid foods but not something as easy to swallow as water.  Her speech therapist explained to me that with solid foods or even thickened liquids, the food/liquid stays in your mouth with enough time to send your brain the signal of "Okay, we've got something that needs to be swallowed, here it comes".  But with thin liquids, they can just slip down into her airways before her brain can register that she needs to swallow.  The NG tube has obviously been a life saver for Ellie but at the same time it's a royal pain in the butt, so we are really hoping her swallowing improves in the next two weeks so that she doesn't have to go home with it. 

Last Friday was Halloween and although we would have preferred to be home with our girls celebrating a "normal" Halloween, the people at TCH and the volunteers here made it a fun day for us.  Before Ellie's stroke I had already ordered the girl's costumes.  Payton insisted that she dress as Jake from the Disney Junior show Jake and the Neverland Pirates and that Ellie would dress as Izzy, Jake's sidekick.  Then a couple weeks ago the costume store Spirit of Halloween hosted a party here at TCH where they let every child pick out a costume.  Ellie didn't attend the party so Payton picked out both of their costumes.  She said she wanted to be a princess and Ellie wanted to be a "bad witch".  The toddler witch costume was really cute so we went with her suggestion.

Halloween morning I put Ellie in her Izzy the Pirate costume.  The therapists were all dressed up for morning therapy sessions and so were most of the kids so it was very fun.  Everyone commented on Ellie's costume which she looked adorable in.  During lunch Ellie got food on her costume and before nap I realized her costume already had a large rip in it.  So it was a good thing she had a backup costume.  That evening I dressed Ellie up as the "bad witch" and we went downstairs to the Halloween carnival.  Ellie surprised us by understanding all the little carnival type games and playing them.  She sat in her little pink car and she could play games like beanbag toss by us getting her close enough to the hole to drop the beanbag into it.  She loved it and got all kinds of fun little toys!

Ellie has come a long way in the 6 weeks since her stroke and with each new skills she regains we are beyond thrilled.  Thank you all for the continued prayers and support!  I'm sure I've said this more than once but we are very thankful for all of you!