Angels for Ashlyn II

The Angels for Ashlyn Benefit Concert was another huge success!!! I want to thank everyone who attended and donated their time, auction items and money. I want to extend a special thank you to Love and War Plano, Courtney Keith, Larry Bartek, and Jordan and Casey Hendrix. The bands were awesome and very gracious. Ashlyn stood with Miss Texas (picture above) to sing the National Anthem, and also performed her own solo (so cute). What a special day!

It looks like we are going to have beautiful weather this Sunday for Ashlyn's benefit concert at Love and War in Plano!!! The support we have received for this event has been AMAZING. Ashlyn is so excited about "her party!" She has been working on a new song to sing this year... :)

My First Day of Kindergarten

We have survived the first week of kindergarten :) I think mommy has struggled with it more then Ashlyn. She seems to love her new school and teacher. She is such a big girl now! She is in a main stream kindergarten class and pulled out for special education services. She will continue her therapies through the school year and horse therapy will start in September. July marked one year since her brain surgery and she continues to be seizure free. The neurologist told us that two years seizure free means the surgery was a success. Our focus now is therapy therapy therapy and helping her catch up to her peers in regards to social skills and maturity.

Love and War in Plano is hosting a 2nd benefit concert for Ashlyn on Sunday, October 3rd, at 4 p.m. The line-up includes Randy Brown (who was a big hit at last year's benefit concert), Mike Mancy and headliner-Two Tons of Steel. The money earned will continue to help pay for medical expenses still lingering from her surgeries and her continued medical care and therapies. We feel very strongly that all of the service providers who have changed Ashlyn's life for the better deserve their bills to be paid. Ashlyn is so excited about her "PARTY" and we look forward to seeing everyone there.

Ashlyn just finished her first session of adaptive swim lessons. In three lessons she was dunking herself under water and swimming small distances without a life jacket! It's so amazing to watch considering she wouldn't put her face in the water just a month ago. She starts a second session next weekend.

We had a neurology appointment last week and the doctor took her off of one of seizure medications (Dilantin) which was very exciting! She will remain on one seizure medication for the long hall. The doctor is adding a medication for ADHD in a couple of weeks. We have made it one successful year out of surgery. Two years seizure free is considered a success!!!!

We took her to Six Flags this weekend and she is definitely an adrenaline junky like her mama! She basically rode every water ride and roller coaster allowed for her height. We can't figure out how the car makes her so nauseous but stick her on roller coasters and she's perfectly fine????

*** A second Benefit Concert (Angels for Ashlyn) is in the works for October 3rd at Love and War Plano....

Ashlyn completed a week long horse riding session this month. This is different from hippotherapy because she is learning more about the mechanics of riding her horse. They are working with her on holding the reigns with both hands...which is challenging for her. We are hoping to squeeze in one more riding session this summer and then start back up with hippotherapy and riding in the fall. The summer has been filled with a lot of swimming so far. She started an adaptive swim class on the weekends.

My baby has officially graduated from pre-school and will start kindergarten in the fall. She is so excited!

The Last Couple of Months...

We have been very busy since the last posting. Our families had a wonderful Christmas holiday! What a gift to see Ashlyn on Christmas morning; I think she is a professional present opener now. Her big gift from Santa was a three story dollhouse. She has loved all of the snow days....even the random one we had this past weekend. She has mastered the snowball in mommy's face. Ashlyn had an awesome 5th birthday party which she shared with family and friends. It was so cute to meet all of her friends and watch her interact with them. The theme of the party was "Princess" because someone has named herself "Snow White, AKA Princess Ashlyn."

Ashlyn has continued to remain seizure free!!!! YEAH!!!!! She is still in therapy three times a week and wears all types of apparatus to assist with her motor function and spasticity. She is still learning to adapt to her loss of vision to the right side but we have seen much improvement. Thank you for all of the continued thoughts a prayers.

Sorry it has taken so long for a new posting!!! Ashlyn is continuing to excel. She is doing so well that she no longer qualifies for all day school. For those who don't know, Ashlyn has attended early childhood through the school district due to her special needs. Most children only attend a morning or afternoon session but because she was not progressing and retaining information due to her seizures prior to surgery, the school district approved for her to attend both sessions. After Christmas break, she will only attend the morning session. We have enrolled her in a Montessori school where she will attend after her morning session.

There have been no signs of seizure activity and her starring off spells have lessened. She now weighs 51.5 lbs.........a big improvement from the 37 lbs in the hospital after surgery. The medical team/therapists are still working on the spasticity on her right side, primarily her lower leg/ankle area. She had botox injections six weeks ago to help loosen the muscles but it seems to be wearing off. Botox tends to last 6 weeks-3 months but she seems to metabolize it quickly. She is being fitted for a new night brace which she will wear all night to help stretch those muscles. We are in the process of getting her back in hippotherapy (therapeutic horse riding) to help strengthen her core muscles.

Ashlyn is definitely in the Christmas spirit! We decorated the apartment over Thanksgiving break. She loved hanging up the ornaments...she even has her own little Christmas tree in her bedroom which she also decorated. I think Santa is going to bring her a "big girl bike" since she is tiring of her therapeutic bike. She also is excited about her birthday. She keeps asking me if it is January so she can turn five.

I will definitely post more pictures throughout the holidays.

Day at the Air Show

We took Ashlyn to the air show in Fort Worth. The jets really held her attention....do we have a future pilot in the making??? I thought the loud noise would scare her but she just smiled and laughed. At one point we took her to the children's area where she figured out a way to climb up the ladder of a tall blow up slide. It was amazing to watch! She was very patient and determined to get to the top.

Ashlyn's Angels Benefit Concert was a huge success!!!! I want to extend a huge thank you to Love and War in Plano, Jordan and Casey Hendrix, the bands and everyone who donated auction/raffle items and/or money, and helped to organize and attended the event. Its overwhelming to know there are so many generous and caring people. For those of you who couldn't attend, Ashlyn had a blast and was quite the entertainer. She started the evening with a medley of "ABC..." and "I am a Pizza" on stage and over the microphone. I don't think there was a dry eye in the house. The Steve Ferguson Band brought her up on stage for a guitar solo. Love and War has offered to host another concert in the Spring.

On Friday Ashlyn had botox injections in her right arm and leg and started an oral medication to help alleviate some of the spasticity. This should improve her range of motion. We should start to see some improvements in the next couple of days. Mommy is sick with the flu so I haven't been able to see my baby since Friday! This is the longest period of time we have ever been apart. Hopefully she can come back home Wednesday or Thursday. So far she is showing no signs of the flu and she is on preventative medication.

Play Date at the Arboretum

A group of us brought the kiddos to the Arboretum yesterday. Ashlyn loved all of the pumpkins and exploring the different play areas. Feeding the goldfish was a big hit....thanks for bringing the cereal Desiree!!! Ashlyn is continuing to do well at school and therapy. She had one seizure at school last week but there is no need to panic at this point because the neurologist said she may have some "dying off seizures" 3-6 months post operation. Ashlyn and mommy got flu shots yesterday...ouch!

Don't forget about the benefit concert on October 11th at Love and War in Plano :)