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!

New Developments...

Great news! Prior to surgery, we were told Ashlyn would most likely lose the functioning she had in her right hand. Many of you remember that prior to surgery her right hand was very spastic but she was able to grasp objects. Up until a couple of days ago she was unable to voluntarily move her right hand, but....we all know that Ashlyn is the exception to every rule! In the last couple of days she has been able to wrap her little fingers around one of our fingers. You can see it all over her face that she is trying to squeeze our finger with that hand. Since the surgery, her right hand and arm are less spastic which makes it easier to work with. Ashlyn's mood and behavior have continued to improve. She is making lots of new friends and likes to challenge others to wheelchair races. She is pretty much walking without any assistance but there are still some balance issues. She has even gotten brave enough to try running. Some of the therapists and child life coordinators are taking the kids to Dave N Busters this week.

Lil' Angel

Today the kids played dress up and Ashlyn chose the angel wings...so cute. She is walking more and more on her own. She is asking to go outside more which is great to see. She loves to get in the wagon and have mommy take her around the block. This week was a little rough with all of the stomach issues but she seems to be getting over it. She is looking forward to Daddy coming for the weekend. She only has two therapy sessions on Saturdays and Sundays are strictly R&R and fun!

Movie Night at OCH

Ashlyn has a new BFF who stays right across the hall from us. Movie night included TinkerBell and pop-tarts. Today some of the staff took these two and another little boy to the Dallas Aquarium. The girls were so excited this morning they were dressed and in their wheelchairs 30 minutes prior to departure. There were some wheelchair races to pass the time by. Ashlyn ended up getting sick at the aquarium so the trip was cut short. She did talk about the big turtles and the Nemo fish. There has been some vomiting the last couple of days...not too sure what's causing it.

All Smiles!

It has been so great to see Ashlyn's feisty and funny personality come back! A lady came to play music with the kids on Friday and Ashlyn was playing the drums and calling out song choices. The princess is back in charge! I've noticed that she is less hyper and able to focus for longer periods of time then prior to surgery. She constantly complains her "mouth hurts" but we haven't been able to figure out the cause. This seems to occur primarily when she is about to have to do something she doesn't want to do but there have been episodes while she is sleeping or just relaxing and watching a movie. Let me know if you guys can think of anything that could cause a 4 yr old to say their mouth hurts. There are some theories: nausea, anxiety, oras, radiating pain from the surgery, etc. Prior to surgery, "My mouth hurts," meant she was having seizure activity (oras) or nausea. Other then the mouth thing she is doing really well.

My New Ride

Ashlyn has a new wheelchair which allows her to operate it and is not as restrictive as the last one. It's amazing how quickly she figured out how to use it. She must get her driving skills from her mama! (I know some of you are laughing) She saw the eye doctor yesterday who confirmed she has no vision to the right out of both eyes. This was expected with the surgery. The doctor thinks it's possible Ashlyn has some of this when she first got sick. Her therapist feels she is compensating well. They will be patching her right eye in therapy in order to make her left eye stronger. Yesterday some people brought in animals for the kids to see. Ashlyn got a kick out of a parrot who sang Happy B-Day.

Still Working Hard...

Hello all! Ashlyn got her feeding tube out on Friday and has done really well with eating and drinking. Her discharge date has been scheduled for September 8th. She is continuing to progress with walking. On Sunday, while with daddy and grandparents, she got out of her wheelchair and took off walking on her own! We are still dealing with the drastic mood swings but this is to be expected for the kind of surgery she had. The doctors have started her on medication to help alleviate some of the anxiety. My cousin sent her these flowers which excited Ashlyn and she kept saying, "Mommy, these are my flowers!?!?!" We love you Ashlyn, keep up the great work!

Ashlyn is doing so much better! Just look at that face, she is smiling more and that sparkle is back in her eyes. She is getting closer to walking on her own. She can actually do it but is a little uneasy because her balance is off. Today she painted mommy and daddy a frame shaped as a flower...it's as a masterpiece!

We have received inquiries about donations for Ashlyn's care/medical expenses. An account has been opened in her name at Capital One. All you have to do is go in any Capital One Banking Center and provide her name (Ashlyn Kasik) to make a donation. A paypal account is also in the works...

The First Week of Therapy...

Ashlyn has gotten used to her new schedule and is doing well in therapy. She is up to 6 therapy sessions a day and we can already see improvements. She is in a wheelchair for now, but anyone who has met her knows that won't be for long. Today she discovered she can move the wheel with her hand...everyone better clear out of the way! In the last couple of days we have started to see Ashlyn's spunky personality come back. She is expressing interest in coloring and playing with toys. She is also eating and drinking better so hopefully the feeding tube will be out by the end of the week. Thank you to everyone who has kept Ashlyn in their thoughts and prayers...it's working...keep them coming!

Our New Home

Yesterday Ashlyn was transferred to Our Children's House (Baylor Hospital) in Dallas where she will continue to receive medical care and intensive therapy. Our first day here happened to be "Christmas in July!" There were projects and presents for the kids. The festivities proved to be too much for Ashlyn so Santa made a special visit to our room. She just stared at Santa in amazement and agreed to a photo shoot :) It looks like we will be here for approximately 6 weeks. So far it seems like a great facility.

Let's start from the very beginning...

Ashlyn has been such a blessing in my life and I wanted to share her story of strength and determination with all of you. Ashlyn had no complications at birth and was healthy and developmentally on target. At 13-months-old, she developed a red rash all over her body and a high fever. Her father and I took her to the ER and were told that she had a viral infection which was not uncommon and that the rash would run its course and she would be fine. We took her home that night, put her to bed and the next morning we found her unresponsive and in a grand mal seizure which lasted 20-30 minutes. She was taken by ambulance to the hospital and was in and out of the pediatric ICU for two weeks. Multiple tests were run and she was assessed by an infectious disease doctor but no one was able to diagnose the virus that attacked her body. It was later discovered that this unknown virus attacked the left side of her brain and caused significant damage. There was also discussion of her possibly having a stroke. When we left the hospital with Ashlyn she was unable to move the right side of her body and had some sensory and feeding issues. After months of physical, occupational and speech therapy she was able to walk by age 2 and gain some function in her right arm. Her therapies over the last three years have included botox injections in her right arm and leg (to alleviate some of the spasticity), horse riding (hippotherapy), braces (AFO) on her right foot and arm, stem therapy, casting her left arm to force her to use her right arm, etc.

Aside from the physical problems, Ashlyn developed epilepsy approximately one year after the encephalitis. Over the last couple of years her seizures have become more frequent and intense. We tried multiple combinations of seizure medications which have been unable to control her seizures. Over the last few months she has been having multiple seizures a day which affects her behavior and ability to progress and learn. The seizure medications have also reeked havoc on her little body. She has been hospitalized two times for pancreatitis in the last year and a half and has been hospitalized multiple times for toxicity from one of her seizure medications.

Because of the intensity of her epilepsy and the complications with her medication, the decision was made to pursue surgery to ultimately stop her seizures for good and provide her with a better quality of life. According to her doctor, without surgery her seizures would become even more frequent and intense and she would have a very limited life. On 7/6/09, Ashlyn had surgery where grids were placed directly on the left side of her brain to help determine the location of her seizures and the functionality she still has on that side of the brain. The grids were left on her brain and she was observed in the hospital for a week. The testing was successful but very taxing on her body. On 7/13/09, she had surgery again where they completely disconnected the left hemisphere of her brain from the right hemisphere (AKA hemispherotomy). This means she only uses the right side of her brain. Because the left side of her brain has been disconnected, once again the right side of her body has taken a hit. There will be months of therapy and recovery to get her walking again and back to her physical state prior to surgery. We are still in the hospital and are soon being transferred to an in-patient rehabilitation facility. Ashlyn is a fighter; please keep her in your thoughts and prayers.

Well here we go!

Jennifer, Desiree and I have spent the last few hours attempting to create this blog. Hope you like it!