Today marks the 10th anniversary of Tootie's initial strokes (5 total). When I think of the times we almost lost her and EVERYTHING she has been through, it hurts my heart.
Shortly after the first 3 strokes, Tootie was diagnosed with Epilepsy. She had 2 brain surgeries last year in hopes of eliminating them but we were only seizure free for 43 days.
She has seizures every day and every day I question, when are they going to stop, I question if everything we are doing to improve her quali
Yesterday we had a benefit for Tootie at a local hotel. The monies raised at the event will be used to take Tootie to Florida for HBOT (Hyperbaric Oxygen Therapy). We took Tootie to a center in Pennsylvania in 2005 and saw tremendous improvements. We are hoping to see positive results in this round of dives as well.
During the benefit, the front desk was telling the hotel guests about our event. The girl told one couple and they not only made a donation, the woman prayed for Tootie. She told
For those of you that don't know, Tootie spent 8 days in the hospital last week. The CT Scan and MRI confirmed she had 2 more strokes.
Last Wednesday, Tootie's hematologist came into our IMU Room. She had "that look" I saw almost 9 years ago. She sat down and said, I am really sad, this is really sad. We can't figure out why Tootie is having strokes. We think she may have a rare condition where her body is just prone to having strokes, and if we can't figure out why, then this will most like
Dear StrokeNet family, Tootie was hospitalized twice last month for seizures. Since the seizures are getting worse we, along with her team of doctors, have decided she needs brain surgery. Tootie’s surgery is scheduled this week.
The neurosurgeon is going to open her skull and sew grids of leads to her brain. He also told us since she has an abnormality at the base of her frontal lobe, they are going to drill a hole in the back of her skull and explore there as well.
Tootie will be mo
Yesterday, Tootie participated in the First Annual Texas Angels Pageant.
The entire day was filled with activities; playing games, making posters, doing hair and makeup, lunch, and practice.
Tootie walked the stage accompanied by a member of the local ROTC and myself. Every child was sashed and crowned on stage.
Although it was a long day, it was a great day for all the children and families!
Around the middle of September we made a dental appointment for Tootie. At the time, the dentist decided to get a thorough cleaning Tootie would need sedation; that was scheduled the first week of October.
Although Tootie just had a physical for school, the surgical center wanted a new physical on their form. I made an appointment with Tootie’s pediatrician and faxed the form to the dentist 10 days prior to the scheduled surgery.
So we show up for the surgery and after waiting a couple
My daughter, Crystal, is Tootie's mom. She sent this to me this morning; I want to share this with you:
You almost took everything but we gained even more.
The very first moment you feel your unborn baby kick you begin to have dreams. Dreams of a future cheerleader, or football player, a singer, an artist, everything.
You spend countless hours, minutes, days thinking about what your future holds for your baby. You know that life will be perfect because wel
Last week went to Tootie's eye doctor. We'd met with him this past June and were confident in starting Tootie on Vigabatrin.
Vigabatrin is an antiepileptic drug that was just approved by the FDA this year. Since Vigabatrin can permanently damage the vision of anyone who takes it, anyone on this medication must see an Ophthalmologist every 6 months.
At our initial meeting in June, the loss of peripheral vision was discussed; however, this time the doctor shared we would need to decide if
Yesterday we met with the rep from DynaVox. The Sales Consultant showed Tootie 2 pictures; since Tootie was responding well in making a choice, the rep showed Tootie 3 pictures.
I was so impressed with the device; it comes equipped with Windows 7, a camera, can be used as a remote since it has Infrared, is about the size of a small laptop and all these other features I hope to learn!
A mount is also going to be provided so Tootie can use the device while she sits in her stroller. Th
About 3 weeks ago,I attended the InKidAble Children's Special Needs Network annual conference. The keynote speaker was Brad Thompson. Brad is married to Karen; they have 2 children; Justin and Hali. Brad's daughter Hali has multiple special needs. Brad spoke on Resilience - Finding the Ability to Bounce Back in the Midst of Chronic Stress.
Brad's ability to use humor and candor was most effective. He shared one day after taking his daughter to school, he saw another parent. The parent app
Tootie is in today's Waco Tribune-Herald. She and her dad are pictured on the front page of the local section.
Yesterday, we attended the Pancakes and Planes event at the McGregor Executive Airport via the Starlight Children's Foundation Great Escapes program.
We were served buttermilk/blueberry pancakes with sausage and orange juice.
After breakfast, we took pictures of and with some of the planes. Tootie was also given a toy plane made of balsa wood.
I plan on scanning t
I am so excited, Tootie started riding yesterday! This time around, she is doing Hippo with her Physical Therapy Assistant. Tootie rode Aggie; Aggie is new to the center. The PTA thought Tootie did well considering it has been almost 2 years since Tootie's been on a horse.
Tootie is in the August issue of Waco Today Magazine:
http://www.wacotrib.com/wacotoday/AUTISM-in-a-new-light.html (picture only)
and also at
The article states Tootie is autistic and cannot speak; now to clarify, Tootie isn't autistic but she is non-verbal. She does have left-side weakness from the 3 strokes but she is able to walk; she's just unable to walk long distances and m
My Tootie is going to the hospital for 3 days. She is going to get an MRI and a 48 hour video EEG. Thankfully they have to sedate her for the MRI so, they will put the leads on while she is still asleep.
Her neurologist is trying to determine if Tootie is still having infantile spasms or if she is transitioning to another type of seizure. The neurologist is wanting to start Tootie on Vigabatrin.
She has been wanting to put Tootie on this for a while but we were hesitant to start he
Saturday the 9th, Tootie started Basketball. Tootie is number 12, just like former Texas Longhorns quarterback Colt McCoy! The uniforms remind me of the colors of the New York Knicks. It was very cold that morning so most of the children were wearing pants and long sleeve shirts underneath their jerseys. I think Tootie is going to like playing since she was very attentive. We have been practicing making baskets in PT as well.
Wednesday (10.28.09); all the children were asked to wear their Halloween costumes to gymnastics. Since Tootie has OT before we go to the gym; Tootie had to wear her Halloween costume to OT. Tootie was a Geisha Girl!
Thursday (10.29.09): Tootie
I feel like it has been forever since I blogged and so much has happened!
Tootie is now going to a different clinic for OT/ST services and I am quite pleased with the smooth transition. Since the clinic doesn
Today Tootie and I attended VBS at one of our local churches. The church not only encouraged special needs children to attend; they are focusing on children with special needs.
Since they had so many kindergarteners; Tootie had to be placed with the 4 year olds. Tootie and I made a train using a sponge dipped in paint. After art, we listened to a story about Jesus and sang some songs. We then had a snack of gold fish and apple juice. Afterward the children lined up and we went on the
Tootie had her ballet recital on June 12th and 13th. The ladies from the bread store, the ones that always give her a box of moon pies, attended the event. Others who attended the event were my other daughter, my ex-husband and his wife, my sister and her husband, Crystal
May 29th was our last night for gymnastics until the fall. It is too hot in the gym for the children. I bought the volunteers that lead our team some Blue Bell Banana Split Ice Cream as a thank you gift. Since they were at a graduation, the Tumbling/Karate/Break Dancing Instructor led the last class.
May 30th was the Closing Ceremony for T-Ball. Since it was so hot, we left as soon as Tootie received her trophy (there's a picture in the gallery).
June 2nd we walked to Mrs. Baird
Yesterday; as we were watching the girls practicing for the ballet recital; we began discussing how far each had come. One mother shared she loved the song by Miley Cyrus about mountains because it reminded her of her child. She tried finding it via her phone so we could hear it but was unable to since she couldn