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Saturday, April 29, 2006
Friday, April 28, 2006
Genetic Test Final Results
Just a quick update on Jenelle. She's been completely off Topamax since April 16, and unfortunately we are seeing more seizures than usual. In fact, the day after my last update, Jenelle had a short grand mal at daycare - her first since last September. The good news is that the grand mall did not last long and did not require Diastat (her emergency medication.) Also, the increase in seizures has not affected (knock on wood) her progress as she continued to sit up on her own, laugh, smile and seem more interested in the world around her. Upon reading my last update about the feeding issues, a friend reminded me that Topamax is also an appetite suppressant! I'm told it could take a month or more to get the Topamax out of her system so hopefully we may see an increase in appetite that would also help the feeding issues. We are keeping an eye on things, and if we notice the seizures increasing, I'll put in a call to UCLA to see what to do next.
Speaking of UCLA, the genetics department called yesterday and spoke with Brett. All of the tests they ran for Rett Syndrome were negative. I had assumed they were negative as they hadn't called since they last told us the initial test was negative, but apparently as each test was returned as a negative, they ran another test for another gene until they could completely rule it out. Genetics would like to see us again, and we may schedule something for our next scheduled appointment with Dr. Shields in July.
Speaking of UCLA, the genetics department called yesterday and spoke with Brett. All of the tests they ran for Rett Syndrome were negative. I had assumed they were negative as they hadn't called since they last told us the initial test was negative, but apparently as each test was returned as a negative, they ran another test for another gene until they could completely rule it out. Genetics would like to see us again, and we may schedule something for our next scheduled appointment with Dr. Shields in July.
Wednesday, April 26, 2006
On being a working Mother
I was just telling someone last week, that I was so grateful for Jenelle’s school, and her wonderful daycare provider and her many therapists. Because of these people, I get to simply be “Jenelle’s Mommy.” This idea is not my own. Way back when the problems first surfaced for Jenelle, I spoke with a woman who was working full time as an attorney and who had a child similar to Jenelle. She was giving me advice on Regional Center, and requests to make with social services and the like. As the conversation ended, she said something I’ll never forget; “Remember Kelly, your job is to be her Mother. Not her doctor, not her nurse, not her teacher or therapist, but her Mother. You should not be trying to practice her therapies at home, but be the one to kiss her after she gets a shot, and to hold her when she cries. That is your most important job with a child with special needs like Jenelle.”
So, putting aside those “special needs”, why can’t this be true for all children as well? Why isn’t it acceptable to voluntarily work as a woman, and leave others to care for your kids during the day? This issue of the “Mommy Dichotomy” seems to be a hot topic this week, and a recent post at a very popular blog really hit me the wrong way. After getting up the nerve to comment about it, the author responded and I later realized she was truly being sarcastic, and actually trying to give credit to the Mothers who choose to work. However, In reflecting on my hurt, I think I now realize the real issue that hit home with me is that I wonder whether or not people think I’m wrong to continue working, especially with a child like Jenelle.
I’ll never forget when Jenelle’s first Neurologist (a doctor I didn’t really like) point blank told me to quit my job to take care of Jenelle. I think I recall him saying something to the effect of “You are not showing me that you are very dedicated to Jenelle’s medical needs if you continue to work!” and “Wouldn’t you want to enjoy the little time you might have left with her now than regret not being there because of work?” He said things like this on more than on occasion. And he couldn’t have been more wrong. Sometimes people have to work. And of course I drop everything when there is an emergency with Jenelle. Who wouldn’t? And my employer understands. Thankfully, our current Neurologist doesn’t see things that way.
When Jenelle’s medical issues got worse, I was struck with the realization that I was forced to continue working for our insurance. Being that Brett is self employed, our only health insurance comes from my employer, and if I left, I’d lose not only my income, but would be paying more for private insurance (and risking that other insurance might not carry Jenelle!). Clearly, that was something we couldn’t afford at the time. Now, Jenelle receives Medi-Cal, and should we ever lose my insurance, she would always have that to cover her medical expenses. And I’m still working. By choice.
Jenelle’s care-givers during the work week do more for her than I could ever imagine trying to attempt. But of course, that is their job, and that is what they were trained to do. Because of her care-givers, I can go to work and come home to be her Mommy. To love her, hug her, bathe and care for her like any parent would do. And our life is better for it. And because of it, Jenelle knows her Mommy. She knows I am her comfort, and she knows I love her. That really is a Mother’s job, isn’t it?
Ironically, Brett and I have recently discussed my maybe going part time in a year or two. Not necessarily because of Jenelle, but because of our typical son Jack. Jack will be starting school in the fall, and is very busy with his many extra curricular activities, even at age 5. He will need someone to help him after school and to take him to all his activities and such. But even with families where both parents work, people manage this all the time. Somehow it works, and it’s OK, and if I don’t go part time, he’ll be fine. I'll still be his Mommy.
The real question is - Why do I have to justify this to anyone? I think the answer is because as a Mother, we also carry guilt. But when I get tired with work, and start to dream that maybe it would be nicer to be at home, I think about Jenelle, and realize I’m a better Mother to her because I work. And isn’t that the real goal in the end? To simply be a good Mother, whatever way you choose to Mother your children? At least that is my goal, no matter what anyone else thinks!
~~~~~~~~~~
Just a little update - Jenelle continues to do well with the wean from Topamax. Unfortunately last Thursday she had a grand mal - her first since last September. She had it at daycare, and her provider said it only lasted a few minutes, and didn't even require Diastat. In fact, she didn't even feel the need to call me, and told me the next morning. And you know what? I'm not sorry I missed it. I have complete confidence in the people that care for Jenelle while I work. And Jenelle has been just fine ever since.
So, putting aside those “special needs”, why can’t this be true for all children as well? Why isn’t it acceptable to voluntarily work as a woman, and leave others to care for your kids during the day? This issue of the “Mommy Dichotomy” seems to be a hot topic this week, and a recent post at a very popular blog really hit me the wrong way. After getting up the nerve to comment about it, the author responded and I later realized she was truly being sarcastic, and actually trying to give credit to the Mothers who choose to work. However, In reflecting on my hurt, I think I now realize the real issue that hit home with me is that I wonder whether or not people think I’m wrong to continue working, especially with a child like Jenelle.
I’ll never forget when Jenelle’s first Neurologist (a doctor I didn’t really like) point blank told me to quit my job to take care of Jenelle. I think I recall him saying something to the effect of “You are not showing me that you are very dedicated to Jenelle’s medical needs if you continue to work!” and “Wouldn’t you want to enjoy the little time you might have left with her now than regret not being there because of work?” He said things like this on more than on occasion. And he couldn’t have been more wrong. Sometimes people have to work. And of course I drop everything when there is an emergency with Jenelle. Who wouldn’t? And my employer understands. Thankfully, our current Neurologist doesn’t see things that way.
When Jenelle’s medical issues got worse, I was struck with the realization that I was forced to continue working for our insurance. Being that Brett is self employed, our only health insurance comes from my employer, and if I left, I’d lose not only my income, but would be paying more for private insurance (and risking that other insurance might not carry Jenelle!). Clearly, that was something we couldn’t afford at the time. Now, Jenelle receives Medi-Cal, and should we ever lose my insurance, she would always have that to cover her medical expenses. And I’m still working. By choice.
Jenelle’s care-givers during the work week do more for her than I could ever imagine trying to attempt. But of course, that is their job, and that is what they were trained to do. Because of her care-givers, I can go to work and come home to be her Mommy. To love her, hug her, bathe and care for her like any parent would do. And our life is better for it. And because of it, Jenelle knows her Mommy. She knows I am her comfort, and she knows I love her. That really is a Mother’s job, isn’t it?
Ironically, Brett and I have recently discussed my maybe going part time in a year or two. Not necessarily because of Jenelle, but because of our typical son Jack. Jack will be starting school in the fall, and is very busy with his many extra curricular activities, even at age 5. He will need someone to help him after school and to take him to all his activities and such. But even with families where both parents work, people manage this all the time. Somehow it works, and it’s OK, and if I don’t go part time, he’ll be fine. I'll still be his Mommy.
The real question is - Why do I have to justify this to anyone? I think the answer is because as a Mother, we also carry guilt. But when I get tired with work, and start to dream that maybe it would be nicer to be at home, I think about Jenelle, and realize I’m a better Mother to her because I work. And isn’t that the real goal in the end? To simply be a good Mother, whatever way you choose to Mother your children? At least that is my goal, no matter what anyone else thinks!
~~~~~~~~~~
Just a little update - Jenelle continues to do well with the wean from Topamax. Unfortunately last Thursday she had a grand mal - her first since last September. She had it at daycare, and her provider said it only lasted a few minutes, and didn't even require Diastat. In fact, she didn't even feel the need to call me, and told me the next morning. And you know what? I'm not sorry I missed it. I have complete confidence in the people that care for Jenelle while I work. And Jenelle has been just fine ever since.
Saturday, April 22, 2006
Three years ago...
Three years ago today, Brett and I had a very difficult day. I left work early because we had a doctor's appointment for Jenelle - just the usual 6 month well baby check up. However, on this day, we had a lot of questions and things to discuss with Dr. Patel. While we still had hope that Jenelle was just acting like a "premature baby", we feared there was something more.
At 6 months, Jenelle was not sitting up, she could barely hold up her head, and couldn't even bear weight on her legs. She was as floppy as a rag doll. She was content though, slept well and had just mastered rolling over. There was hope. After a long discussion, Dr. Patel agreed there might be something more and put in for a referral to a neurologist. Basically, the beginning of Jenelle's Journey.
After that appointment, we took the kids to grandma's, and went to a funeral. We barely knew the young man who had died, but we knew his parents well. His Mom was like a mentor to me as a paralegal, and his life paralleled ours in many ways - we got married a month apart, we had babies weeks apart, and he was our age. Danny died of a cancerous brain tumor - his fourth. It was such a difficult day to endure.
I don't really see Danny's Mom Linda as much anymore. Prior to his death a group of us including Linda tried to meet for dinner every other month. They were my "paralegal support group." Things changed that day 3 years ago for all of us. A few months later, Jenelle was diagnosed with Epilepsy, and the only words to describe that time in our life would be chaotic. Linda changed too - I cannot imagine burying your child, even a child at age 30. Parents are not supposed to out live their children. The family remained strong, and her daughter married later that year, but I know it has always been difficult and different since Danny died. And he left a young wife and 2 year old daughter.
Linda has been on my mind so much lately. I really need to email her or call. She has been a source of great support because she can relate to the seizures since Danny had them from his tumor. It's not easy to watch a child have a grand mal - I can't imagine watching a full grown man. Linda tells me that she knows Danny is watching us all - and she often prays to him to take care of Jenelle. The funny thing, I think he is watching her and taking care of us all. And life goes on.
So while today is an anniversary of sorts in that this is where Jenelle's Journey begins, I can't believe its been 3 years. The recent months have been good to our girl, and we'll take it! I hope we have many years to come.
At 6 months, Jenelle was not sitting up, she could barely hold up her head, and couldn't even bear weight on her legs. She was as floppy as a rag doll. She was content though, slept well and had just mastered rolling over. There was hope. After a long discussion, Dr. Patel agreed there might be something more and put in for a referral to a neurologist. Basically, the beginning of Jenelle's Journey.
After that appointment, we took the kids to grandma's, and went to a funeral. We barely knew the young man who had died, but we knew his parents well. His Mom was like a mentor to me as a paralegal, and his life paralleled ours in many ways - we got married a month apart, we had babies weeks apart, and he was our age. Danny died of a cancerous brain tumor - his fourth. It was such a difficult day to endure.
I don't really see Danny's Mom Linda as much anymore. Prior to his death a group of us including Linda tried to meet for dinner every other month. They were my "paralegal support group." Things changed that day 3 years ago for all of us. A few months later, Jenelle was diagnosed with Epilepsy, and the only words to describe that time in our life would be chaotic. Linda changed too - I cannot imagine burying your child, even a child at age 30. Parents are not supposed to out live their children. The family remained strong, and her daughter married later that year, but I know it has always been difficult and different since Danny died. And he left a young wife and 2 year old daughter.
Linda has been on my mind so much lately. I really need to email her or call. She has been a source of great support because she can relate to the seizures since Danny had them from his tumor. It's not easy to watch a child have a grand mal - I can't imagine watching a full grown man. Linda tells me that she knows Danny is watching us all - and she often prays to him to take care of Jenelle. The funny thing, I think he is watching her and taking care of us all. And life goes on.
So while today is an anniversary of sorts in that this is where Jenelle's Journey begins, I can't believe its been 3 years. The recent months have been good to our girl, and we'll take it! I hope we have many years to come.
Thursday, April 20, 2006
Recent G.I. Visit & Update
Wednesday we had a follow up appointment with Jenelle's G.I. Doctor. Jenelle now weighs in at 30 pounds, and is 39 inches tall! She's grown 3 inches since January! She is at the 25 percentile on the weight chart, and 75th percentile for height. All good news considering this time last year she wasn't even on the chart for weight. I talked a lot with the doctor about Jenelle's eating. I just can't get her to eat by mouth for me, and school reports good and bad days eating by mouth, but not enough food by mouth to sustain her nutrition intake. Thank God for the G-Tube - because of it she is thriving and progressing. Dr. Idries wants another swallow study and said if it appears that Jenelle is still aspirating and having swallow problems, she may want to prescribe more feeding therapy.
The doctor asked why I was so worried with Jenelle not eating by mouth. At this point with Jenelle not progressing much with her OT, it is very likely that she will be G-Tube dependent for the rest of her life, thus living only on formula. While it is now less stressful to feed her because of the G-tube, I explained that for quality of life reasons it would be nice if she could enjoy the taste of different foods and maybe learn to drink from a straw. The doctor agreed, which is why we are doing another swallow study and why she may push for more feeding therapy. Jenelle has been progressing so wonderfully lately, I've been telling friends that I'm actually looking forward to her next IEP, which isn't until August. Now that she has mastered sitting up and moving, next year we should work on eating and speech. I can tell she tries to talk sometimes, maybe someday we will actually get a real word out of her.
And finally we are completely off Topamax! I'm hoping that this will help her metabolic acidosis and help her progress more. We are seeing an increase in seizures, but I've held off in calling UCLA to see if the increased seizures would dissipate over time. So far, that has been the case and we are seeing less the longer she is off Topamax. Keep your fingers crossed for us!
Don't forget the 2006 Freedom Walk is coming! We are so excited to see the donations coming in, and I greatly appreciate the checks I've received in the mail! We have such a wonderful support group and we appreciate you all so much! If you haven't checked it out, click here to check out our team page, where you can make an on-line donation or join our team! I've noticed that during the day, it takes a while for the page to load on your web browser - so be patient. Or you can always access the Freedom Walk page at www.epilepsyalliance.org and do a search for Jenelle. Thanks again for your support!
That is all for now - I'll continue to keep you posted!
The doctor asked why I was so worried with Jenelle not eating by mouth. At this point with Jenelle not progressing much with her OT, it is very likely that she will be G-Tube dependent for the rest of her life, thus living only on formula. While it is now less stressful to feed her because of the G-tube, I explained that for quality of life reasons it would be nice if she could enjoy the taste of different foods and maybe learn to drink from a straw. The doctor agreed, which is why we are doing another swallow study and why she may push for more feeding therapy. Jenelle has been progressing so wonderfully lately, I've been telling friends that I'm actually looking forward to her next IEP, which isn't until August. Now that she has mastered sitting up and moving, next year we should work on eating and speech. I can tell she tries to talk sometimes, maybe someday we will actually get a real word out of her.
And finally we are completely off Topamax! I'm hoping that this will help her metabolic acidosis and help her progress more. We are seeing an increase in seizures, but I've held off in calling UCLA to see if the increased seizures would dissipate over time. So far, that has been the case and we are seeing less the longer she is off Topamax. Keep your fingers crossed for us!
Don't forget the 2006 Freedom Walk is coming! We are so excited to see the donations coming in, and I greatly appreciate the checks I've received in the mail! We have such a wonderful support group and we appreciate you all so much! If you haven't checked it out, click here to check out our team page, where you can make an on-line donation or join our team! I've noticed that during the day, it takes a while for the page to load on your web browser - so be patient. Or you can always access the Freedom Walk page at www.epilepsyalliance.org and do a search for Jenelle. Thanks again for your support!
That is all for now - I'll continue to keep you posted!
Monday, April 17, 2006
Easter photos!
Just thought I'd share some photos of the kids yesterday. Here is Miss Jenelle looking grumpy but sitting pretty in her Easter dress.
And another view of Miss Jenelle sitting pretty.
Jack & Jenelle and their Easter Baskets after the hunt. Jack is such a good Big Brother and loves to get eggs for his little sis!
Hope you had a great weekend!
Wednesday, April 05, 2006
Update from our little Sick Ward!
WOW! As you know from the last post, last Thursday Jenelle woke up vomiting with a fever of 102.9. It was the beginning of what we are now calling the "Curran Family Sick Ward" week! Before I knew it, and before I could update anyone about her, Jack got sick, I got sick and Brett, who already had a cold, got sicker. The last six days have been awful for us all - Brett still remains home today with a slight fever of just over 100. I know that some of you were concerned that we were in the hospital... Believe me, I would have found a way to post that if it had been the case! Always remember the rule of thumb here is "no news is always good news!"
So, the good news is that we were able once again to avoid the ER and hospital for Jenelle due to her G-Tube! Also, I am very happy to report that during the time when she had an extremely high fever and had vomited most of her seizure meds, we didn't really see an increase in seizures! Remember even a slight fever of 100.8 will usually set off her seizures! As it turns out, the kids had Strep Throat, and on top of Strep Throat, Jenelle had stomach flu. Both Jack and Brett got Strep Throat and nothing more, I ended up with both bugs! I guess that's just Jenelle's way of showing extra love for her Mommy!
In other news, Jenelle continues to do well with sitting up, and is now getting up on all fours in the true crawling position, but she doesn't get very far as she can't seem to lift her head off the floor. She looks very cute doing it though. Also, on the Topamax wean - we are down to the last 25mg a day! I noticed that when we started the wean again after our trip her seizures increased again, so I kept an eye on it and didn't lower the dose again until we had two days with better seizure control. If all continues to go well, she will be completely off Topamax by Easter!
That is all I have to report right now! I am attaching some new photos of Jenelle taken on Saturday where she is sitting up completely on her bottom! Unfortunately, she was still feeling sick, so she doesn't look very happy. And yes, her curly hair is just a mess of curls, but oh so cute!
Thanks for the continued prayers and positive thoughts - I'll keep you posted!
So, the good news is that we were able once again to avoid the ER and hospital for Jenelle due to her G-Tube! Also, I am very happy to report that during the time when she had an extremely high fever and had vomited most of her seizure meds, we didn't really see an increase in seizures! Remember even a slight fever of 100.8 will usually set off her seizures! As it turns out, the kids had Strep Throat, and on top of Strep Throat, Jenelle had stomach flu. Both Jack and Brett got Strep Throat and nothing more, I ended up with both bugs! I guess that's just Jenelle's way of showing extra love for her Mommy!
In other news, Jenelle continues to do well with sitting up, and is now getting up on all fours in the true crawling position, but she doesn't get very far as she can't seem to lift her head off the floor. She looks very cute doing it though. Also, on the Topamax wean - we are down to the last 25mg a day! I noticed that when we started the wean again after our trip her seizures increased again, so I kept an eye on it and didn't lower the dose again until we had two days with better seizure control. If all continues to go well, she will be completely off Topamax by Easter!
That is all I have to report right now! I am attaching some new photos of Jenelle taken on Saturday where she is sitting up completely on her bottom! Unfortunately, she was still feeling sick, so she doesn't look very happy. And yes, her curly hair is just a mess of curls, but oh so cute!
Thanks for the continued prayers and positive thoughts - I'll keep you posted!
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