Sorry it has been a little while since the last update, but it has been a little busy around here. A couple of weeks ago I had a garage sale that I actually did pretty good on and all of that money went into Lillie’s account. I know I sound like a broken record, but Nathan and I really appreciate everything that everyone has done for us since Lillie’s accident. It has been hell but it makes me feel better knowing that Lillie has so many people that care about her and are willing to help her in any way they can.
Now, for some awesome news..Another thing I was busy with was trying to get approved for a grant that would give us the means to purchase additional therapy equipment or medical equipment for Lillie and we got approved!!!! I was so exited. It was cool how it happened because I had to fill out a bunch of paperwork for the grant request, which included a detailed list of all the items I was requesting. Well, it was sent for final approval or denial and I figured I would hear from somebody letting me know either way. A few days went by and I had not heard anything, but I didn’t think much of it. Well, I got a delievery from UPS one day, which was not uncommon because I get medical supplies all of the time from them and I’m thinking that was what was in the package. Then I opened it I realized it was some of the things I had requested !!!! I am surprised that nobody called 911 for a noise complaint because of how loud I was being and how exited I was. It was like Christmas in March for me because for about a week I got a delivery almost everyday. I am still exited about it. Lillie got some neat therapy tools that will help her in speech therapy. She got a net swing that has a feeder seat inside of it, which we are going to hang on our deck so she can play outside. She got these toys that are so cute. They are a Giraffe, a pig and an elephant that have what is called a switch that connects to them. Since Lillie can’t really interact with her toys, the switch allows her to activate the toys with just a touch of her hand and it will connect to most of her battery operated toys. The switches have to have a battery adapter for them, so I ordered those as well..What else..She also got a crawler assister which is something she can lean over to be in the crawler position and it has wheels on it so we can push it to help her along until she can do it herself. She also got and pulse oximeter which measures the oxygen levels in her blood and checks her pulse at the same time. Eat your heart therapy companies! We have it all right here! Trust me, if I had a bigger house Lillie would have much, much more! I could go crazy ordering out of the catalog I got everything from.Well, it is getting pretty late so I will go but I will update again as soon as I can. Thanks and God Bless!
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Hello!
March 24, 2009 by lilliesgrace
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Hi Alicia–
Toni (who was an elementary schoolmate of mine) passed on Lillie’s story to me. I just wanted to take a brief moment to rejoice with you in Lillies strides so far. We were told that our little Fen (born 11-1-06) would not survive and that even if he did, he would be a vegetable his entire life since he had very little oxygen to his brain for the first 36+ hours of his life. They had no success getting his oxygen sats up to 50% at the first two hospitals, so we were transferred to Cooks to place him on a last resort procedure called ECMO. Only a small percentage of children live beyond their first bday after being on ECMO, and of those few, 89% suffer severe mental retardation. Thanks goodness we didn’t research those stats before he got there! I’m here to tell you that he has made a full recovery and is even ahead developmentally–Just add this to your mental list of miracles and know that our family looks forward to following Lillie’s journey to her FULL recovery! I’m so glad to see she’s doing the hyperbarack (sp?) chamber. I know of another family who has had great success with her little boy who is an SBS survivor. She says that there is an organization who assists families like you in receiving free treatments. I will check with her for the name of it and to see if they assist nationally–I think they’re based out of Florida. All I know is that she gets free therapy for her son.
Keep the hope, continue to pray and visualize Lillie healthy and whole then let it go to God. Lillie’s story is and will continue to be a testament of God’s love.
Love from one miracle baby family to another,
Kristin