Our Little Tator-Tot!!!

~Thanks for checking on our little Tator~Tot! We have been through alot over the past 5 years with Taylor, she was diagnosed at 3 months old and recieved her first bone marrow transplant at 7 months old. It failed by day 60, so at 13 months old she had her second round with another transplant. Thank God the second one did not fail and she is now 3 1/2 years post transplant. Taylor is one of the many joys in our lives, we could not imagine this world without her! I feel so blessed to be her mother, even on the days it is a struggle to get her to do what I want, I am still thankful, as every Hurler parent is. It's not everyday that you can bring a miracle into this world and have it turn out the way Taylor has. She is a very independent 5 year old who loves school, animals, her friends, the out doors, everything life has to offer. She is a typical girl, loving dress up, talking on the phone, afraid of bugs, not trying wierd food, she just seems so normal to us! I hope Taylor's story inspires any other parent stricken with the new that their little miracle has Hurler Syndrom. I hope people can look at her with hope, the way we do everyday!!

Journal

Monday, October 16, 2006 9:00 PM CDT

Here it is October already! Where has the summer gone! I guess we were just too busy to realize it had already slipped away. School has started up again just as fast as the leaves have changed colors. They both have a way of sneaking up on us. Taylor is so happy to be back in school, and very lucky to have a brand new one to return to! Her old school was moved into a new one built across the parking lot right behind Rileigh's new school. Rileigh's really isn't new, just remodeled and added on to, both are beautiful! Taylor is in the same pre~school program as last year, 2 days special ed, 2 days mainstream. She did so well last year that we can't even imagine what she will be doing this year! Tieing her shoes? Reading? Writing her alphabet? Its all so exciting! The best part is that she loves it. Her friends, her teachers, all of it! She can't wait to get up in the morning to go "play" at school.
We recently finished her three year post transplant appts. They were supposed to be this past winter, but I guess the BMT clinic kind of forgot about us. I dont really know quite what happened, but I had to call and remind them, and this summer was very hectic, so it took a little while to get them all done. Actually, we still have two appts left. Ortho and she has to have her growth hormone tested.
Her endocrinologist suggested that we have her growth hormone tested because while she is still growing, she has slowed down a little bit. She was averaging about 2.5 inches a year, I don't know what she has slowed down to, but on the growth chart she is starting to flatten out instead of continuing to curve. If the tests show she is deficient in the hormone then we will have to talk about getting infusions, but hopefully that won't have to happen. We will just have to see.
The only real change with Taylor was that she had to get glasses. She was pretty nearsighted. She lookes sooooo adorable in her new glasses, we ended up getting two pair, one for back up. Its a good thing too, trying to get her to leave them alone has been rough on all of us. She has done everything from biting and scratching the lenses to chewing off the nose pads several times! I'm glad we chose to actually buy a pair instead of just taking the ones covered by insurance because the insurance ones were not covered under abuse! I can take her expensive ones back as many times as I need to for up to a year. And she's only had them for two months. Fun!
Everything else was normal for Taylor as far as her appts went. I don't expect anything major from ortho, we just have to keep an eye on her hips. Her back had only a 14 degree curve, we are very fortunate. She had a normal MRI, her carpal tunnel syndrome test was completely normal, everything was perfect except her eyes! Which are still perfect to us!
Anyway, we will try and update a little more often, instead of every six months, I know that terrible! But what can I say, no news usually means good news!
Thanks for checking on Taylor!!
Jen

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Hospital Information:

Jennifer & Joseph McClung
15889 Fremont Ave N.W.
Prior Lake, MN 55372
952-226-5856

Links:

E-mail Author: jnandjo@yahoo.com

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