Smiles from Jenelle at Christmas!

After Christmas Update on Jenelle

Just a quick update to let everyone know we had a wonderful Christmas and enjoyed many smiles with Jenelle. Unfortunately on Christmas she started to get a Urinary Tract Infection and was quite miserable without the help of Motrin. I was able to call her doctor on the following day to get a prescription and she is doing better now. Unfortunately, it seems Jenelle does not want the year to end without another illness. She started coughing on Tuesday and has a viral upper respiratory infection. We saw the doctor this morning, and she prescribed some great cough syrup that also helps Jenelle get some much needed rest. Jenelle is doing well weight wise, and is almost 29 pounds! That means she has gained a total of 8 pounds since getting her G-Tube!

In other good news, Jenelle is still very close to sitting up and unfortunately has cuts and bruises on her face to prove it. Earlier this month, I asked our doctor to put in the request for a "helmet" and learned this morning it has been approved! We really didn't think we'd need a helmet until Jenelle was more independently mobile (ie: walking) but knew she'd eventually need one because of her "drop" seizures. And in all honestly, I didn't want to wait for a trip to the ER for stitches to prove she needed one, and fortunately neither did our Doctor! We are also excited about this news because our insurance is changing next month and we will have a $5,000 limit on Durable Medical Equipment. Fortunately Jenelle has most of what she needs equipment wise (Stander, Wheelchair, AFOs), but with her G-tube supplies, that $5,000 won't last long. Our previous insurance had no limit. It will help that this helmet will be covered by our old insurance as it won't count against the $5,000 limit we have with the new insurance. We are very pleased with the new insurance (via my employer) as they have already assigned us a "transition assistant" and "case-worker" to insure that Jenelle's appointments at UCLA in January and February will be covered.

Wishing you a wonderful New Year - we hope your holiday has been special. Thank you for the continued positive thoughts and prayers for Jenelle. It means so very much to us all!

Merry Christmas!

Wishing you and your family a Merry Christmas,

and a peaceful New Year!

Thank you for all your love,

prayers and support

for our special girl!

Visits with Santa!

This first photo is Jenelle and Jack with "Santa Cop", courtesy of our local Police Department. The City has a tradition where "Santa" visits the neighborhoods for photos each year, he literally drives up in front of our house with a special sleigh, and a police escort! This photo is great of Jenelle, but Jack was too eager to eat that candy cane!

And here is the "official" Santa photo for the kids this year. I like it, especially that Jenelle is not sucking her thumb this year!

Ho Ho Ho!

Thank you all for the many comments and emails about Jenelle's recent photo. We agree 100% that it is the best ever photo of her, and truly in the photo you can see that she is so happy. What a difference! We are glad to send a smile your way!

12/14 update on Jenelle

Well, the photo below was taken by Jenelle's Great Aunt Nicki and was just too cute not to share! As you can see, Jenelle is happy and doing very well. Things have been going well at her new school, and she is so very, very close to sitting up. However, I think once she finally sits up, she won't know what to do with herself. I've noticed a huge difference when I lift and carry her in that she can really keep herself stable while being held. That gives some relief to Mom's old aching body. She is also really using her arms and elbows to support herself on her tummy, and even attempt to crawl. We couldn't be happier with her progress.

Seizure wise things are the same, which is good (knock on wood as always!) We still see some eye flutters here and there, but nothing too concerning. We got a call from UCLA Genetics last week, and they want to see her on January 30 to discuss her tests from July, and possibly suggest some more tests. They wouldn't tell me more than that, which is concerning only because its not fun to guess about anything involving genetics. She sees Dr. Shields again on February 2, so that week should be busy.

We hope this update finds you all happy and well and getting ready for your holidays. Thank you for the continued prayers and support. I'll keep you posted!

Santa's Little Helper!

Just sharing the cutest ever photo of our girl! She is actually upside down, but the smile is perfect!