HAPPY 5 YEAR ANNIVERSARY!!!It is so hard to believe that Rachel's been pumping for 5 years. What a blessing it has been to her and our whole family.
When Rachel was 4 her doctor asked if we would be interested in participating in a study they were doing putting kids under 5 on pumps. The purpose of the study was to determine the benefits--if any--on the family and caring for a small child with diabetes. No one had done any research like this before and because we were the star patients at Texas Children's ;) she was asked to be the FIRST of 14 kids.
What an opportunity. The best part about it was that she got to be on a pump for 6 months and if we didn't like it at the end...no commitment. Seeing as the darn things cost upwards of $10,000 not to mention the cost of supplies...we decided we couldn't pass it up. Rachel of course had to give the okay...and although it was scary for her and us to try something new...she decided that being poked in the rear once every 2 or 3 days was a much better deal than 2 or 3 times a day.
Because we were the guinea pigs we went through quite a lot to help them get the whole project started. They would do things and then decide they needed to make a change and start us all over.
One of the things we had to do frequently was have her wear a continuous glucose monitor. A device that takes a blood sugar reading every 5 minutes for up to 72 hours. It was really quite amazing. Jared and I each got a turn wearing one as well...just so Rachel wasn't the only one poked.
The CGM would then show us what her "trends" were and we could use that information to decide how to best program the pump. I can't tell you how many visits to Texas Children's Hospital we had between February 2002 and June 2003 (the guinea pigs took a little longer to get going than they originally thought.)
The hour drive got old quick, but we were so glad to have some of the best doctors and a team of research nurses at our beck and call! They were so great. Oddly the 3 research nurses we worked with were Sue, Susan and Suzanne...we love them so much...
So I'll cut to the chase and tell you what our family got from this whole experience. FREEDOM and PEACE OF MIND...well a little at least. Up until that point it was SOOOO difficult to leave Rachel with anyone...because no one knew how to measure her insulin in the syringes. At the time she was getting sometimes 1/4 units of insulin...which is literally DROPS. If it's not measured the same each time you could easily increase or decrease her dose and have some serious problems. The pump made it possible for us to have other people administer insulin to her. That has made mine and Jared's lives so much better.
With shots you have to give the insulin before you eat. So what do you do when you give your kids a shot and then they decide they aren't hungry, or they don't feel well?? You spend the entire day trying to make up with juice and whatever else you can get in them to keep them from having a hypoglycemic reaction and ending up in the hospital. I remember one time when I couldn't get Rachel to eat or drink anything...I finally had to take her out on the front porch and forcibly pour apple juice in her mouth. She was choking and screaming...we were both crying and a sticky mess when I felt like she had enough in her to sustain her for a bit. It was terrible. With the pump...if you don't feel like eating...then you don't give yourself any insulin. It's also helped in the night when she's low we don't have to wake her up to drink juice at 2 a.m. anymore...we can just shut off her supply for an hour or so.
So...I'm sure you're tired of my ramblings...but I am so grateful for this amazing machine we have to keep our sweet little red-head alive and healthy each day. It certainly makes me appreciate our bodies and how complex and fragile they are. Each time I fill her reservoir I am humbled by the fact that the teaspoon of insulin I put in there is what is keeping her alive for three days until we fill it again. (and a lot of hard work..) What a blessing.
I have to give a shout out to Jill--we couldn't have done it without her. Without complaint she watched Jonah and Luke for every appointment we had. And to Barbara...our favorite school nurse--thanks for your patience and help in figuring it all out!! WE LOVE YOU and miss you!!
9 comments:
She is a trooper. Very inspiring story and thank goodness modern medicine.
Becky, I am so glad to finally know about your blog! You probably emailed me your address when you first started it, but chances are I didn't know what a blog was and didn't do anything about it! I'm finally catching up and am happy to be able to be updated on your family.
This is a great thing to have documented Becky!! I love the pictures, it's crazy to see how much Rachel has grown since then. I too am thankful for the pump & for the freedom it allows all of you. That Rachel is a special girl...Happy pump anniversary. ( : Love to you all.
Such a blessing! I always think about the story of when Rachel made something for class about why she was the luckiest girl (or why she was thankful to be her - I can't remember...) but it was because she had the pump. Best attitude in the world, and I credit her fabulous parents!
I can't believe it has been that long! I remember when she was a baby and you guys couldn't figure what was wrong. I'm so glad she's healthy and that you can all live a somewhat normal life:-)
I can't belive it has been that long! She is so mature with it now, and so on the ball. We miss playing the how many units game! When is Jared coming this way?
You helped me during our chaos too and became a second mother to Sophie and Evan when I couldn't be there. Rachel was so little and brave! What a great example she is and her parents who functioned on no sleep!! Miss you guys!
Inspring, and amazing how much a family's life change with this "extra" schedule. I've always been impressed how you and Jared have taken the bull by the horns and faced it, tears and all, but impresive. Now they just need to make a pump that transmits all that information you're supposed to be writing on that chart! Wouldn't that be another blessing!
We miss your family!
That is so amazing! I had no idea how little insulin is needed to make such a big difference. Hooray for the pump. Rachel is so grown up and responsible with it now. I'm glad you were in the perfect location at the time to be able to participate in that study and that it's made life so much easier for all of you. You're all an inspiration to me! You deal with so much and always maintain such a positive attitude!
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