View Full Version : Busy Keturah

04-06-2009, 12:28 PM
I'm too lazy to retype everything, so I'm just copying and pasting my update to my family and friends.
Keturah had 5 CHOC appts over a 4 day period. She got her orthotics adjusted on Monday so they don't hurt her feet anymore. She's proudly sporting her new orthotics with purple butterflies and purple straps, as well as the new Hatchback shoes we ordered her. For us, it made a HUGE difference in getting them on and off vs buying bigger cheap shoes.

Wednesday we saw her Pulmonologist. He said that she looks good for now, but he feels very unsettled about not having an answer to her bleeding episodes. He's still very concerned with her last hemorrhage in January as well as 2 weeks of blood clots in March. He feels like we are all just sitting around and waiting for the next bleed. He's trying to help us move things along with Children's Hospital LA. They are a little slow in getting things together. Children's Hospital at Stanford is very close to getting us a whole week scheduled there. I talked to them this morning and we are shooting for a week in June. Keturah also had her Urodynamics testing on Wednesday. This involved a urinary and rectal catheterization. The test was not pleasant...to put it mildly. I think Keturah was a lot more anxious during this test because she just had the VCUG a few weeks before that and still remembered being catheterized then. We haven't heard any results from the test yet.

Thursday she had feeding therapy again. She is still continuing to do a great job! She added shredded cheddar cheese to her list of foods. She still has to break it up into smaller pieces, but is able to eat a small bowlful in one sitting. She's also been eating her Mac N Cheese being fork mashed and not made in the baby food maker, so the chunks are bigger. In the beginning she was only able to eat small quantities with it being fork mashed. It takes longer for her to chew, and she tires easily. But by last night, she was eating noodles that were only slightly mashed and she had about a third of a cup! That's a lot! She also rediscovered chocolate last night. She went to an Easter Egg hunt at our church over the weekend and had gotten some small chocolate bunnies. Last night she thought maybe she'd try a little lick...which turned into sucking on it...which turned into nibbling....which turned into biting! She had chocolate all over her hands and face and she loved it!

Friday we saw her Hematologist. She has a defect in her platelet aggregation study. Basically, the platelets aren't holding together like they should. If Keturah starts to bleed, her clots break apart and it causes the hemorrhaging. They still aren't sure what's causing it. They prescribed her a medication called Amicar, which is supposed to preserve the integrity of the blood clot so it doesn't break apart. It won't prevent the bleeding, but should hopefully help prevent a hemorrhage. They also want to try a Stimate trial and repeat the platelet aggregation study. The Stimate is a nasal spray that is supposed to help take care of the defect. However, it carries a large risk for fluid retention in the brain, lungs, and heart. They need to talk with all of Keturah's specialists before they're even able to do the trial. If they do the trial and the defect disappears, then they would use the Stimate to treat her bleeding.

I hope all is well with everyone!

Ainsley's Mom
04-06-2009, 01:24 PM
With Keturah things are never simple are they? At least it sounds like perhaps they are narrowing down on a cause for the bleeding, or at least the hemoraging. I can only imagine how badly you want answers on that one. But it is wonderful to hear she is doing so well eating and I love that she really enjoyed her chocolate bunny! And I'm so glad she got some comfortable shoes! :hug: Keep letting us know about the test results, trial and all that.

04-06-2009, 01:30 PM
sounds like a hectic 4 days! Glad to hear Keturah is doing do well with eating - chocolate, yeah! (Sam still likes his chocolate pudding, but little else;) ) I hope you can get some good news on the trial and hopefully an answer to what is causing the bleeding. We think of you often on this side of the pond:hug:

Julie x

04-06-2009, 03:39 PM
I'm glad they are narrowing in on the cause of the bleeding, and that some form of treatment is available.:)

June sounds like a busy month for you all, but hoping for more good news.

Keep us posted!:hug:

04-06-2009, 05:49 PM
The true sign of an intelligent female: she likes chocolate! Go Keturah. :hug: Karen

04-06-2009, 09:36 PM
I'm praying you start getting some answers.

04-07-2009, 02:29 AM
I hope you guys can get some rest after all of those appointments...I am glad that they are trying to get some answers!! Chocolate is always a good way to end a busy week:)

My little figther
04-07-2009, 06:59 AM
Chocolate.... boy she could have Belgian in her.LOL. I hope you will have some real answers soon.

04-07-2009, 05:03 PM
We will still be praying for all of ya'll. It is a busy life for sure.


04-07-2009, 06:26 PM
Guess I need to send a chocolate P U R D U E in my next box! She has good taste.