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!
Wednesday, December 14, 2005
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
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.
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
Thankful.
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.
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.
Wednesday, November 30, 2005
Finalized the IEP!
Just a quick update to let everyone know Jenelle is doing well. We met with her new school on Monday to finalize her IEP because her 30 day introductory period was over. We got to meet her new PT, OT and Vision Therapist, all of which said she was "adorable". I'm hoping this is not "too much information", but we were surprised to hear that they were starting a "potty training" regimen with Jenelle, and that she was actually successful peeing on the potty 3 times! If you are like me, you may be wondering how they are doing this. Apparently they start with scheduled times to put Jenelle on the potty all throughout the day, and accordingly she has "pee'd" successfully three times (for the month!) Not sure if it is a fluke, but it is a start. I've always imagined that Jenelle would forever be in diapers, and the thought of potty training her never enter my mind. It is a slow process, but maybe in a few years, Jenelle will understand the need to go, and will be able to tell us when we need to put her on the toilet! What a wonderful idea - I'm glad they know what they are doing with her!
We are doing well with seizures, but Jenelle continues to have "stuffy" days which confirms my suspicion that she has some allergies. If it continues to be an issue, I think we may need to start her on an antihistamine. We'll just wait and see because I hate to put her on more drugs if we don't have to!
That is all to report. Seizure wise things are great (knock on wood!) Now we're just trying to avoid the flu and other sicknesses that are common this time of year! Thank you for the continued prayers - I'll keep you posted!
We are doing well with seizures, but Jenelle continues to have "stuffy" days which confirms my suspicion that she has some allergies. If it continues to be an issue, I think we may need to start her on an antihistamine. We'll just wait and see because I hate to put her on more drugs if we don't have to!
That is all to report. Seizure wise things are great (knock on wood!) Now we're just trying to avoid the flu and other sicknesses that are common this time of year! Thank you for the continued prayers - I'll keep you posted!
Friday, November 25, 2005
Thanksgiving Update!
It occurred to me yesterday during dinner that I forgot to send out an update before leaving work on Wednesday. I realized that without an update, some might worry that we were in the hospital again. No worries, this is another "no news is good news" update!
Jenelle is doing really well at school, and big brother Jack got to visit last Friday morning. He really liked her teacher and her room. He thought it was very "safe" and very colorful. His teacher said he was a smart little boy (and she's right!)
Jenelle is very close to sitting up, and in fact has mastered rolling to her side and resting on her elbows very well. I was surprised the other morning when I walked into her room to see her sitting on her side with her head in her hand. It was as if she were relaxing or something. She only holds this position for a few seconds, but gets better each day.
Monday afternoon is our 30 day IEP with her new school. I'm confident we will all agree on everything, and I'm anxious to meet her new Physical Therapist and Occupational Therapist. That is the only thing I miss with Jenelle taking the school bus now; I rarely get to interact with her therapists, so I sometimes feel out of the loop. She still seems stuffed up, and I worry that she inherited my allergies (just what this child needs, more drugs!) Other than that, at least she is staying healthy (knock on wood!)
Hope your Thanksgiving holiday was wonderful! We're still waiting to hear from UCLA about the visit to genetics. Thank you for your continued prayers and support - I'll keep you posted!
Below is a photo of Jenelle as she arrived for Thanksgiving... all tuckered out with Grandma and we had only been there for 1 minute!
Jenelle is doing really well at school, and big brother Jack got to visit last Friday morning. He really liked her teacher and her room. He thought it was very "safe" and very colorful. His teacher said he was a smart little boy (and she's right!)
Jenelle is very close to sitting up, and in fact has mastered rolling to her side and resting on her elbows very well. I was surprised the other morning when I walked into her room to see her sitting on her side with her head in her hand. It was as if she were relaxing or something. She only holds this position for a few seconds, but gets better each day.
Monday afternoon is our 30 day IEP with her new school. I'm confident we will all agree on everything, and I'm anxious to meet her new Physical Therapist and Occupational Therapist. That is the only thing I miss with Jenelle taking the school bus now; I rarely get to interact with her therapists, so I sometimes feel out of the loop. She still seems stuffed up, and I worry that she inherited my allergies (just what this child needs, more drugs!) Other than that, at least she is staying healthy (knock on wood!)
Hope your Thanksgiving holiday was wonderful! We're still waiting to hear from UCLA about the visit to genetics. Thank you for your continued prayers and support - I'll keep you posted!
Below is a photo of Jenelle as she arrived for Thanksgiving... all tuckered out with Grandma and we had only been there for 1 minute!
Thursday, November 17, 2005
High Court Rules against Parents in Special Education Case
A new blow to parents of special needs kids... and in my opinion, it comes from the very court we expect to protect our kids the most. Here is the article and editorial post from Postcards from Holland. Needless to say, this is a message to all parents that we need to fight, and not give up on wanting better things for our kids.
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