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!