Visit with the Pulmonologist
August 27, 2003 by · Leave a Comment
I just wanted to update you on the latest for Savanna. She saw her pulmonologist today and assuming that we make it thru respiratory season okay (which I know we will), then we can look to possibly have her trach removed by next spring!!! This is such wonderful news, I can’t tell you how happy this makes me. That in less than a year my baby may be trach free! No more private duty nursing, no more loads of hospital equipment, no more emergency trach bag with us at all times and Savanna being able to go swimming without the constant worry of keeping her neck out of the water.
As most of you know, we attended the Familes of SMA conference in June of this year. It was a bittersweet trip. My prayer for the trip was that we would gain some important knowledge about SMA, have a great trip and meet some lifelong friends at the conference. Well, 2 out of 3 isn’t bad. We did gain some imporant knowledge and make some lifelong friends, the Cole family from Coppell, also known as Darrell Alan’s mommy and daddy. He is a precious little boy just a few months older than Savanna that also has SMA and his parents are so wonderful. The trip other than that and seeing our dear friends, the Rountrees in Tennessee , was horrible. We felt like the Griswolds take DC! You name it, it happened, even so far as Savanna getting sick while in DC. I mean, really sick with 103 temperature and on her ventilator 24 hours a day. And, we drove! Makes you all just want to rush right out and take a road trip with a handicap child, huh? It was extremely difficult to be hit with so much reality. On one hand, it was wonderful to see all the SMA children and to feel “normal”. On the other hand, it was heart-wrenching to see children with SMA that are so much stronger than Savanna and also see some that are so much weaker than Savanna. The “true Type I’s” as they are called, are often times so weak they have no facial movement, they cannot sit up even assisted, they have Bipap machines hooked up to them even during the day, they cannot talk and they are on these big “rolling beds” as I call them. I didn’t know whether to cry or thank God for the strength Savanna does have at the end of every day. I’m not sure that we’ll make the trip next year because it was very emotional for me.
After getting home and getting thru my “it’s not fair that Savanna got sick again” feelings, I was able to see that, again, God knew what he was doing. By allowing Savanna to get sick, we were introduced to the Cough Assist machine, which I feel is a crucial step in her becoming trach free. The day she got sick I went downstairs to the vendor who happened to be there to show off this magnificent machine (at $7000 it ought to be magnificent!) and asked him if we could borrow it since my child was sick and we drove, yada yada yada. Needless to say we came home with the machine and have since acquired our very own. This thing is wonderful. It inflates Savanna’s lungs and then sucks the air out which makes her cough, thereby removing the junk from her lungs. Sounds great, I know, you all want to know how to get one of these for yourself!
This took her sick time down from a usual 10-14 days to 5 days. In fact, her doctor said today that for the 1st time in over a year, Savanna’s lower left lobe of her lung is inflated. She wants us to start using the mask adapter for the Cough Assist to “transition” Savanna in the hopes that next spring we can do the necessary testing and have her trach removed.
Music to my ears! Savanna is finally starting to talk a little. She has about 5 words — mama, hi, uh-oh, Elmo and uh-huh. Again, another miracle since we have been told by several that SMA kids that are trached will never learn to talk. Savanna turns 2 in a few weeks and we will be having a big birthday party for her. As I have said before, birthdays for her will be cause for huge celebration each year. While we already knew that 50% of all SMA children die before they reach their 2nd birthday, we also found out that approximately 90% of SMA Type I children die before they reach their 1st birthday. Savanna is either a strong Type I or a weak Type II. In the Rush home, we still believe that God is going to heal our little girl. We don’t know how it will be, but we know some day she will get up and walk and dance and sing and play; we look forward to that day and that hope allows us to get thru each day. Without hope, we are all useless. I actually had a woman say to me last week, that Savanna “didn’t have any good years before SMA was diagnosed”. As if her being able to walk for a few years before being diagnosed meant that she would have had some “good years” first. We can tell you that we have had 2 wonderful years with our precious angel and look forward to many more. Savanna knows that she is different — special. That doesn’t change her outlook on life. Like I always say, if we could all learn a little bit from these wonderful SMA chidlren — they have so much to teach us about life.
Well, that wraps up the latest Savanna praise report. I have been scolded by many for not keeping everyone up to date with her progress and I will try to do better. We are searching for a bigger place to hold the fundraiser next year. Other than that, we won’t have any active planning or meetings on that for at least 4-6 months so we are looking forward to having a break. I thank you for your continued prayers and support and faith in knowing that our Savanna will one day be healed. Until then, we will keep fighting for a cure!!!
Odds on a Cure Success
August 22, 2003 by · Leave a Comment
Well, for those of you who were able to make it, you know what a great turnout we had. Our 1st annual Odds on a Cure fundraiser was a huge success. We had about 400 people and raised approximately $25,000 to go to Families of SMA, a volunteer driven, non-profit organization dedicated to finding a cure for SMA.
The benefit was a lot of fun and we had over 200 prizes. The food was great and everyone really enjoyed the casino tables. We will be looking in the next few weeks for a bigger place to hold our event next year. What a blessing to outgrow our space in just one year! We feel so proud to have raised $25,000 with NO corporate sponsors. We had some personal sponsors as well as some small business sponsors, but no big ones like Nokia, American Airlines or anything like that. We feel confident that next year we will be able to get some corporate sponsors and hope to double our money next year.
Thank you all for your generous support and prayers. The fundraiser was about raising money to find a cure, but it was so much more than that. It was about raising awareness for SMA and raising awareness to all of us about appreciating what we have in our lives and all we have to be thankful for. We had a total of 6 SMA children at the event, so I know everyone enjoyed getting to meet some of the other children and see that they are all just as special as Savanna and a blessing to their families as well. As soon as I get some pictures available, I will let you all know.
One last note, what we have found is that a lot of companies will match monies that you donate to a charitable organization. Microsoft, Entertainment Publications and Curves International are three that I know of. Please check with your employers to find out if they will match your donation. That makes a huge difference in the amount of money raised. Also, Tim and I are feeling “called” to open a local Familes of SMA chapter. There are currently no chapters in Texas . Once we can establish that, we will look into getting signed up with United Way . From what I understand, United Way is the only charitable organization that a lot of companies donate to; however, United Way can then send the funds on to legitimate charitable organizations. For instance, you can contribute $50 pretax to United Way , your company would match that $50 and then United Way would send the monies on to FSMA. It is something that I will be looking into in the near future. I’m hoping to take a month off.
Again thank you all for coming and/or supporting us. We could not have done it without everyone’s help and we look forward to an even bigger event next year!!!