request...

Hello all!
In the past few days i have heard from many family and friends out there that this blog is still being checked...THANK YOU! It is perfect timing for me to hear that because i wanted to put a very specific request out there and am glad to know that many people will be reading it...
As you know, we are continuing to explore and research options about Sharon's hip. The doctors are all in agreement that Sharon needs the surgery to prevent her from having serious hip problems as a teen/young adult . The surgery is very dramatic and serious and hard to imagine putting a 2 year old through. The last doctor I took her to did agree to try putting her in a brace for a few months to see if that helps. He honestly doesn't think that it will, but wanted to give me the option...
SO, Sharon and I went on Monday and picked up her "SWASH" brace (stands for Standing, Walking and Sitting Hip brace). It looks somewhat like a climbing harness, but has lots of metal rods and is very stiff. She has been fantastic with it so far and is tolerating it well. The goal is for her to wear it at least at night, and then as often as possible during the day. For six months. Then new x-rays will be done to see if the hip bones have been affected at all by the brace. Again, the doctors do not think it will work, so this is where the request comes in. As i was leaving the doctor's office he said "Prove me wrong"...and we would love to. So, please please please pray specifically for this to do the job. For the positioning of the brace to make her femur and hip socket line up correctly to prevent the need for surgery. This is going to be a tough six months for all of us because this brace is bulky and uncomfortable, but we are hopeful that it will be worth it to spare Sharon from surgery. Sharon already doesn't sleep well, and now with the brace in the mix the nights are even tougher. It's also going to have a somewhat negative affect on her walking progress because it is putting her legs in a position that her therapists are trying to get her away from...So, we just pray that it all serves to keep Sharon out of this surgery.
THANK YOU THANK YOU!!!!
Peace
Jaye, RJ, and Sharon Isabella

Happy Resurrection Time!

Easter Sunday with cousin Jen, Aunt Lorrie and Uncle Fred (cousin John took the picture :)








hunting for eggs....














I found an egg!













It's COLD here in PA!!!! (with Molly)














With "Aunt" Rose :)














Busy at play with Molly.....














Sharon and I had a wonderful trip to PA. RJ went to Kansas to play with some old friends, so Sharon and I took the opportunity to go play with some friends of our own:) We are fortunate to be able to stay with my best friend Angela and her family. She has a daughter a year older than Sharon and it was great for Sharon to be around her.



We were able to visit with some relatives and friends. We are never able to see everyone on these trips because it is just too much to drag Sharon around in the car. But, the time we had with folks was wonderful! And because i didn't push it with her, Sharon really did enjoy the trip and was able to have fun and get rest, etc.



Peace and Blessing to all of you!



Jaye, RJ, and Sharon I.

Sharon with Grandpa Baer at the Easter egg hunt

walking with Grandpa Baer and Dina

"I love my daddy"





So, a couple of things to 'update'.
First, I had a very strange experience this week. I actually couldn't figure out at first why it was so strange, i just knew i was taken aback...
I took Sharon to an opthomologist. Most kids with stroke and hemiplegia have difficulty with their vision and tracking on their affected sides. We haven't been concerned about Sharon because you can't see anything by looking at her right eye. But, our pediatrician thought it would be a good idea to have an expert check her out, and since we don't want to possibly miss any type of doctors (HA!), i made an appt. with a pediatric opthomologist (i think i'm spelling that wrong). So, in Sharon and I went. She was a trooper as usual, putting up with the dilation, tests, etc. And, the doctor said to me (here comes the weird part): "there is absolutely nothing wrong with her eyes or her vision, no indication of a stroke or foreseeable problems." So, Sharon and I left. And after i got her strapped in the car, i was pretty speechless and taken aback by the experience. And on the ride home i realized that this was because I have never taken her to any doctor's appointment, ever, and had them say "no problems, i won't see you again." Pretty wild. In two years, this is the first truly positive doctor's experience we have had!!! I realized that i must usually brace myself pretty heartily before entering any medical office so that i'm always ready for whatever they might say...but i sure wasn't ready for the "all clear"...BUT THRILLED NONETHELESS! I'll take that kind of not-being-prepared any day!


Folks are wondering about the hip surgery. Still no answers there, only a lot of questions. We won't make any decisions for many months but will keep you posted! There are multiple types of surgeries to consider, if surgery is even the plan we decide to go with...so we'll see! The doctors are not pleased with my questions and my second and third opinions, but oh well! I think they are very used to having parents just do what they recommend...but since we've been so far to two docs and gotten two totally different sets of info, we've only just begun to explore....


Sharon's Grandpa Baer came down for a visit! It was so nice...she got to spend a lot of time with him and he joined her and daddy for her first Easter egg hunt. The other kids pretty much swarmed and got all the eggs, but someone shared one with her so that was good! She had fun regardless :)


Thanks for keeping us in your thoughts and prayers and we wish you a blessed Holy Week.


Peace


Jaye, RJ, and Sharon I.