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 :)

Ashlyn's Angels Benefit Concert

On Sunday, October 11, 2009, Love and War in Plano is hosting a benefit concert for Ashlyn from 4 p.m. to 10 p.m. The line-up includes Lane Thomas and the Sidewinders, Steve Ferguson Band, Randy Brown Band with guest appearance by Jordan Hendrix (fiddle player for 1100 Springs) and headliner, The Derailers. Multiple gift items were donated which will be raffled off at the concert. Ashlyn will also be making an appearance!

First Day of School

Sorry for the delay in blogging...I've gotten lazy since returning home. Ashlyn started back to school half day last Wednesday and started all day yesterday. On top of school she has therapy two times a week. So far she seems to be handling it all well. She is happy to be back at school with her teachers and friends. This picture is from her first day back to school. She loves her new little backpack on wheels!

We met with the neuro-surgeon on Tuesday and the decision was made that Ashlyn doesn't have to use her wheelchair at school and only has to wear the helmet when riding a bike. The wheelchair will only be used when we are walking long distances.

Many of you have asked about her seizures...that seems to be the million dollar question. Except for one grand mal a couple of days after surgery, we haven't seen any of her classic seizure activity. The teachers and her dad and I have observed multiple starring off spells where she is unresponsive for a period of time but we aren't sure if they are seizure related. The doctors are aware of what is going on and an EEG is the only way to see if this is seizure activity. According to the doctors, the recovery time for this surgery is six months and that during this time her body may do some bizarre things that are not necessarily alarming. We will just continue to think positively!

The Dream Team

These wonderful women are the speech, occupational and physical therapists who have worked so deligently with Ashlyn the last five and a half weeks. Today was her last day of in-patient therapy; tomorrow morning we will be headed home. Although it has been very difficult to be away from home, Our Children's House has been a wonderful experience. The doctors, nurses, therapists and other staff have really helped us pull through this surgery. They expected nothing but the best from Ashlyn and look at the results! Ashlyn still has a ways to go with follow-up care, but I can leave this facility saying I have my baby back. She's walking, talking, smiling, and using Nubby! Our family has been blessed to have the very best neurologist, surgeon and after-care specialists guide us through this crazy journey. Homeward Bound!

Three Days and Counting!

As you can see, Ashlyn no longer wants to be in her wheelchair. She either wants to be pushing it or walking independently! Ashlyn will be wearing this little helmet to protect her from head injuries. With her instability and vision issues she is susceptible to falls and head bumps on corners, etc. She doesn't seem to mind the helmet. I can't wait to get her home!

Fundraiser for Ashlyn...Fun, Sun and Friends

Thank you to everyone who put this boat trip/fundraiser together and for the generous donations. It was great to see all of you. I am so blessed to have such a strong support system. Update on Ashlyn...today she went running....yes running by the nurses station and the doctor smiled and asked if we were ready to go home. We all know the answer to that question! It was decided today that Ashlyn will be released this Friday and will begin out-patient rehab. She has progressed so quickly that the doctors and therapists feel she can return home!