Thursday, December 29, 2005

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!

Saturday, December 24, 2005

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!

Tuesday, December 20, 2005

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!

Monday, December 19, 2005

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!

Wednesday, December 14, 2005

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!

Friday, December 09, 2005


Genetics. Just the word gives me the chills. I think it is because anything wrong genetically, cannot be fixed. Back when Jenelle was 6 months old, we had our first genetic test done, which was a basic chromosome panel and FISH test to determine if she had a chromosomal defect and/or Praeder Willi Syndrome. Both results were normal, and the Neurologist at the time told me her chromosomes were prefect with no noticeable defects. I’ve never worried about a possible genetic problem since, until I learned that the basic chromosome panel barely touches the surface of all the possible genes they could test. And then in August when UCLA called to inform me that one of her test results came back abnormal, I began to worry again. They haven’t told me much since, except that they were going to have their genetic doctor review her file (which is undoubtedly huge!)

Last night there was a message on our phone from the Genetic Department at UCLA. They want us to come in for an appointment, so I called today and we are scheduled for January 30, 2006, which surprisingly is pretty quick. They actually had something on January 9, but I’m busy that week with work. When I made the appointment, I asked the nurse if she knew anything about what we were looking at, and she said, “We’ll discuss all of that when you come.” And later in the short conversation, she told me to expect the appointment to take at least an hour or more.

I realize there is absolutely nothing we can do to fix any genetic flaw in Jenelle, but a lot of this reminds me of that movie Gataca. Science is advancing at such a rapid pace, we are learning more and more each day about new conditions, and in rare cases new cures. But really, how perfect can the human body get? Even if they have now discovered a genetic flaw in Jenelle that may even give us a diagnosis that we never thought we’d know, is it really going to make a difference in who she is? That my friend is the needle in the haystack. The glimmer of hope that we find the one small thing that can be corrected and give us the miracle we’ve dreamed of having. I doubt that will happen, but I do think we will get some answers, and maybe some realistic idea about whether or not we should have a third child.

A friend from work lost her newborn child this week to a condition so rare that it happens in only 1 of 3,000 pregnancies. When you think about it, I’m sure we’ll never have a child like Jenelle again – her problems are so unique, it would be hard to duplicate. But that doesn’t mean that my age, or my autoimmune disease aren’t factors to consider in thinking that we could have a child with a different problem. A Downs baby or the rare instance of a child with cancer, heart defects. Perhaps there comes a time in life when you accept what you have, and not risk further struggles and heartbreak. I supposed we’ll know more that will help us make that decision in January.

Monday, December 05, 2005


I didn’t do one of those “I’m Thankful for” posts for Thanksgiving this year. Mainly because I simply forgot. Last night we were driving home from the annual family white elephant party and we were listening to the radio station that plays Christmas Music 24/7. While listening to the beautiful music, I started to feel guilty for not making it to church the last few weekends. I’m not a “go to church every Sunday” type person, nor am I overly religious.

As I was listening to the music, which I believe was “Hark the Herald Angels” I began to realize that I love singing these “religious” Christmas songs, and I really only get to enjoy them on Christmas day, which is the one day we manage to make it to church this time of the year. And then, after that thought I realized that I’m taking things for granted with God. We have so much to be thankful for this season; mainly Jenelle's seizure control and that she found her laugh and smile. I’m not sure I could have survived another holiday without it.

Yesterday afternoon, we were at a birthday party for my best friend’s daughter who just turned 3. My best friend and I were pregnant together when I was pregnant with Jenelle, and it was difficult watching her daughter grow up normally while we were going through the struggles we were having with Jenelle. My best friend is a NICU nurse as is her sister-in-law, so they have been supportive and helpful, but still it’s hard to see what should have been in her daughter as compared to Jenelle because their age is so close. While the kids were watching her daughter open gifts yesterday, I had fun playing with Jenelle on the open floor making her giggle and laugh. And then it occurred to me that at this party a year ago, all I did was sit in a chair with Jenelle in my lap, counting the seizures she was having in my arms while the kids were watching the presents. I remember feeling every jerk of every petite seizure she had. I remember counting them in my head because I was afraid we were going to need to use Diastat to stop them, or worse a trip to the ER. In looking back in the archives, this was about the time we realized Lamictal was making her seizures worse. What a difference a year makes.

Since July, when Jenelle gained seizure control, this year has been so wonderful and enjoyable. Her personality is so adorable and outsiders almost feel connected to her for once. We almost feel like we have a somewhat “normal” life now with Jenelle. And I have taken that for granted.

I know that there are times that parents of children with Special Needs question or get angry with God, because I’ve had those moments too. I also realize that God has a plan for my daughter, and for my family along the way. But last night I realized that I am thankful to God for His gifts this year in my Jenelle. Does this mean I’m going to go to church next Sunday? Maybe. I also realize that good health is important, and I shouldn’t push myself too hard because being ill does my daughter no good. The extra sleep on Sunday might help keep me well. I do feel I have many things to be thankful to God for this season. And now that I realize it, I really wanted to share it with you, so I don’t take it for granted.