Just a small update - It looks like Jenelle is going to start school on Monday, which is also Halloween. We had some delay in getting all the paperwork signed by her doctors, but now everything is in order and they are excited for her to start. Bus Transportation however will be delayed a little longer. I was told to anticipate this, so I'm not too worried. I wanted to pick up and drop off on her first day anyway, and I promise I'll take some photos to share. We also have an appointment at UCLA next Thursday, so extra treats all around! It looks to be a routine visit, but it will be nice to get some feedback on her new seizures.
Thanks for the support and prayers! I'll keep you posted!
Thursday, October 27, 2005
Ghosts of Halloween past and present
Just a small preview of Halloween. The "old" photo is me and "Nana" (back in the day) at my first Halloween. Jenelle will be wearing the same costume this year, though I'm going to try to make it look more like Raggedy Ann than Bo Peep.
Monday, October 24, 2005
Saturday, October 22, 2005
Photos from Jenelle's Party!
The Birthday Princess is Three!
Big Brother Jack loves to help open Jenelle's presents!
Mommy, Daddy & Boo!
Jenelle enjoys her gifts!
Nana loves Jenelle!
Singing "Happy Birthday" to Jenelle! (Click on the thumbnail to play the video!)
Happy 3rd Birthday Boo!
We have a three year old in the house! This past year has been amazing, even with all the hospital stays and trips to the ER. I am really very excited for the months that lie ahead for our little girl. Jenelle's last day at the Blind Children's Learning Center was Wednesday, and they celebrated her birthday with some "birthday Jell-O" I prepared. We were sad to say goodbye to her teachers and therapists, and I know they will miss Jenelle very much. Starting sometime next week, Jenelle will be going to school five days a week (30 hours a week) and will be riding the bus. Who knew that she would start school before Jack! I spent a lot of time on the phone with the school nurse yesterday completing necessary paperwork and such and I'm so excited about her placement and truly feel it is the best place for her to be.
We've definitely had our scary moments this year with Meningitis, status seizures, infections and ultimately a G-Tube placement. We also made an effort to try the Ketogenic Diet, which seemed very promising but had to be stopped because her Jenelle's Meningitis. We added two new "diagnosis" to the bunch; Metabolic Acidosis and Failure to Thrive. And we have been given opportunity to see what life is like without daily seizures - even if for only two months. During everything that has happened this year, the biggest "gift" of all was not only finding appropriate seizure control, but that Jenelle finally found her laugh and smile. I had no idea that was so important, but I see the positive effect her laugh and smile have on us all. Children and friends who often overlook Jenelle knowing she was different, now stop to enjoy her laugh and smile. It has even helped the relationship between Jack and his sister - his favorite thing to do now is to make her laugh. Amazing.
Today we will celebrate Jenelle's birthday with a small party. She is feeling much better after her infection earlier this week - the antibiotic seems be working. This morning I sat her in my lap and she held her head still while I put her hair in pony tails. She used to never sit still for me like that. I whispered in her ear that she was my beautiful three year old and she smiled.
And not to leave big brother Jack out of this, I officially signed him up for Little League today! In case you didn't know, Little League is a big thing for the Curran Family. Grandpa Curran is the District Administrator for District 30, Grandma Curran volunteers a lot and of course, there is a baseball field named after the family in Northeast Santa Ana. Unfortunately, Grandpa can't bend the rules about the boundaries for Jack, so he won't be playing at Curran Field - unless someday he makes All Stars! He is currently enjoying swim lessons and piano lessons and will start Kindergarten next September.
Thank you all for the continued prayers and support. I will keep you posted!
We've definitely had our scary moments this year with Meningitis, status seizures, infections and ultimately a G-Tube placement. We also made an effort to try the Ketogenic Diet, which seemed very promising but had to be stopped because her Jenelle's Meningitis. We added two new "diagnosis" to the bunch; Metabolic Acidosis and Failure to Thrive. And we have been given opportunity to see what life is like without daily seizures - even if for only two months. During everything that has happened this year, the biggest "gift" of all was not only finding appropriate seizure control, but that Jenelle finally found her laugh and smile. I had no idea that was so important, but I see the positive effect her laugh and smile have on us all. Children and friends who often overlook Jenelle knowing she was different, now stop to enjoy her laugh and smile. It has even helped the relationship between Jack and his sister - his favorite thing to do now is to make her laugh. Amazing.
Today we will celebrate Jenelle's birthday with a small party. She is feeling much better after her infection earlier this week - the antibiotic seems be working. This morning I sat her in my lap and she held her head still while I put her hair in pony tails. She used to never sit still for me like that. I whispered in her ear that she was my beautiful three year old and she smiled.
And not to leave big brother Jack out of this, I officially signed him up for Little League today! In case you didn't know, Little League is a big thing for the Curran Family. Grandpa Curran is the District Administrator for District 30, Grandma Curran volunteers a lot and of course, there is a baseball field named after the family in Northeast Santa Ana. Unfortunately, Grandpa can't bend the rules about the boundaries for Jack, so he won't be playing at Curran Field - unless someday he makes All Stars! He is currently enjoying swim lessons and piano lessons and will start Kindergarten next September.
Thank you all for the continued prayers and support. I will keep you posted!
Thursday, October 20, 2005
Last day at school and an early birthday celebration!
Wednesday was Jenelle's last day at the Blind Children's Learning Center. Next week she will start at public school in the County Special Education program. I found this really great site that allows you to upload videos, so here is a clip of the birthday celebration (please forgive my singing) including Grandma holding the "birthday jello"... enjoy!
And since I found this video hosting site (please check it out at www.zippyvideos.com) I decided to show you one of Jenelle's new seizures. This is pretty mild compared to others she has had in the past. Look at her right hand that is twitching as she sleeps. The feet you see are Jack and cousin Trevor... we were trying to get them to move away and give her some room.
And I took this photo at school this morning. This is one of those photos I wish I knew exactly what Jenelle was thinking ... maybe she is saying "Mom, you're nuts!" Isn't she Beautiful?
And since I found this video hosting site (please check it out at www.zippyvideos.com) I decided to show you one of Jenelle's new seizures. This is pretty mild compared to others she has had in the past. Look at her right hand that is twitching as she sleeps. The feet you see are Jack and cousin Trevor... we were trying to get them to move away and give her some room.
And I took this photo at school this morning. This is one of those photos I wish I knew exactly what Jenelle was thinking ... maybe she is saying "Mom, you're nuts!" Isn't she Beautiful?
Wednesday, October 19, 2005
Anniversaries v. Milestones
I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.
On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.
I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.
On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.
I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.
Subscribe to:
Posts (Atom)
Posts
