Ashley's Story

She will leave fingerprints all over your heart


So many questions

I know it won't come as any surprise to you guys that I tend to be pretty bad about responding to your questions. I don't know what it is about sitting down long enough to post the answers that alludes me, but it just does. Tonight I'm going to give it an honest effort and try to answer some of the ones that you have asked most recently. Here goes.

1. What exactly is wrong with Ashley's mind?

Ummm, don't we all wish we knew the answer to that one. The truth is that no one really does.

During her transplant evaluation process were informed in one of the reports from her scans that her brain "showed a lack of mylenation". What does that mean? Well, mylenation is the "coating" that covers the nerves. Its kind of like the insulation around a wire. It protects what is running through those nerves. A lack of mylenation means that those nerves in her brain never quite developed that protective coating around them. In essence she has scattered messages that don't flow smoothly across the nerves, but they kind of jump around a little.

In addition to that Ash did suffer a cardiac arrest in January of 07. She did code and CPR was performed on her for about 10 minutes that night. Dave and I believe that she had a lack of oxygen or lack of adequate oxygen flowing to her brain during that time as they worked to bring her heart rate and blood pressure back up. Over the next several days the only words I could formulate during rounds were, "is she coming back? Will she be back?" There were no answers other than "only time will tell". They just didn't know when or if she would open her eyes again and if she would be in there or not if she did.

Praise God my Ashley did come back. She did open her eyes and she is in there. She no longer talks, but her mind is active, and intelligent, and she is learning more and more every, single day.

2. Why doesn't Ashley have a neurologist?

We went back and forth with this one for a very long time. As she was undergoing chemo for PTLD there was a time when the transplant team feared the cancer had spread to her spinal fluid and her brain. During that time we were on the waiting list(which no matter how serious the situation is very, very long. It takes months.) to be seen by a pediatric neurologist. The fears disappeared as the symptoms disappeared and by the time her name came up on the list to be seen we asked ourselves "for what? What can they tell us?" The damage that has been done to Ash's mind is done. It can't be reversed. Labeling it, giving it a name does not heal or cure it. Only time and hard work will aide her recovery. So that is what we do. Neurology would just be another appointment each month, another set of tests, another whatever and the last thing Ash needs is just another.

So we work. She works. Hard. She gains new skills and new understanding of the world around her every single day. We are proud of her. More than proud of all she has accomplished. More than that we are grateful. For each new piece of information she learns we are grateful.

3. Is she standing independently now?

No. She is not. She still needs something to lean on. A couch, a therapy ball, our legs. Anything behind her and she will stand up pretty straight. Without that support she does not stand up straight. She bends at the waist and just can't seem to stand with her back straight. She is making progress each and every week as she works in therapy.

The most exciting thing we have seen lately is her stepping. For months we have had to push her legs, pull her legs, and force her legs to move forward. Recently(as in last week) she began to pick up her own legs, bend them at the knees, and take steps forward as we support her hips and waist from behind and hold onto her hands in front of her. She will also hold onto her walker and if we push it from behind she will take steps forward. This is very, very exciting.

The day that I can pick her up out of her crib and lift her down to where she is standing rather than sitting on the nursery floor is a day I dream of. I close my eyes and try and picture what that will look like.

4. Why doesn't she walk?

No one knows. Honestly, no one does. Not us, not her doctors, not her therapists. Not anyone.

5. You mentioned she wasn't potty trained yet, why not?

Because I don't know how to do this. She doesn't understand. She doesn't stand up. She doesn't walk. She has no comprehension of wetting or stooling. Currently she stools into her ostomy bag. Her stoma allows the stool to "by pass" the large intestine and it exits into the bag rather than traveling the large intestine and coming out through the rectum into her diaper.

6. Why hasn't she had her take down procedure yet?

Well, mainly because we have opted not to. Most of the time this is done a year post transplant. She is now three years post. She has a history of rejection. The transplant team wants her rejection free for 6 months to a year before they will consider taking her stoma down. She has now met that goal.

Technically I guess we could have it scheduled, but I don't feel it is in her best interest at this time. Once her bowel is reconnected she will stool out her rectum into her diaper. With bowel transplant the whole stooling issue is a life long battle. Loose stools, frequent stools, etc. Ash doesn't stand up. She can't walk. She does wear diapers. She would constantly be sitting in a soiled diaper and that would cause some very serious and potentially infectious skin break down on her bottom. I would keep her as dry and clean as possible, but as she grows, gets older, becomes heavier, legs get longer, etc. it is more and more difficult to lift her by myself. So at this time we believe we need to wait until she is able to stand on her own. The ostomy bag is what we know. She's had one since shortly after she was born all but about 10 months of her life. I don't believe she will always have one, but for now she does. We have no plans of scheduling her take down procedure anytime soon.

7. When will her wheel chair arrive?

Not sure. It first has to be approved by the insurance and then it has to be made according to her measurements. We are guessing if it is approved that it might come in by the end of the year.

8. Is Ashley eating again or is she still on a feeding pump?

Yes. She just started. She is up to 3oo calories a day by mouth. She does not bite or chew. She only swallows baby foods or pureed foods. We are excited. Today she ate really, really well.

Her daily caloric intake needs to be 1200 calories a day. Until she can eat that much by mouth and drink enough water to stay hydrated she will require her feeding tube.

She did earn a promotion last month from Neocate(which is as elemental as it gets. The bowel has to do very little breaking down of the food itself) to a toddler formula. She is on PediaSure with fiber at this time. The promotion made life easier for us as far as preparation time. Her recipe is so simple. 5 cans of formula, 650ccs of water, and 120ccs of half normal saline. It has been such a blessing for us to get to make this change.

9. Whatever happened to her Make a Wish?

This is probably the most asked question we have had as of late. I really can't even tell you how many times we are asked this. Its not an easy answer to give because we don't really know the answer.

So far nothing has happened. We had the interview. Made her wish. Were informed that her wish had been granted and then given a start date. Initially we were told they would love to get it done in time for her birthday. That came and went. Next we were told in September once the fiscal year reset. We have not heard from them at all.

Its a weird situation. Ashley is currently using the room that we wished to have made for her. Its a big, open, bare room that we have done nothing with because we knew her wish had been granted. But... like I said she uses the room everyday and we really need to get it built out for her as soon as possible. The problem is that we don't want to step on any ones toes. We aren't sure how to handle the situation. I don't think its right to call and ask questions because this is a gift. A blessing being bestowed upon Ash. How do you say "when is she going to get it? When are you going to start? Are you still planning on doing it for her". I just thinks that rude. If they choose to do nothing at all then that is still ok. Its a gift. Not expected. Not owed. Just a gift.

Dave and I have considered starting on it ourselves because the equipment being placed in it is needed for her therapy and classes every single day. Would that be rude? Inappropriate? I just don't know what to do. I really don't, so we are making do for now. All of her teachers and therapists know about our plans for the room and they are looking forward to having such a special place to work with Ash. We are too. Whether or not it comes in the form of Make a Wish is unknown at this time.

For now I'm just waiting. As soon as anything starts to take shape I will be sure and share with you all. It will truly be a magical place for Ash. Someday.

10. Is she enjoying riding?

YES! She LOVES it. What a difference a year makes. She is so happy and excited while riding her horse. It is such a blessing to us to be allowed to partake in such an amazing experience. Dave and I go together every Friday morning and watch her. I am still wiping tears from the corners of my eyes as she goes round and round the arena. It is a dream come true to have her healthy enough to enjoy such an amazing form of therapy. Its truly beautiful to watch.

11. Do you still have your props from her birthday parties and would you consider loaning them or renting them?

The garden party? I didn't keep any of those things. Wish I had, but just didn't have the space at the time. I gave most of it away to guests at the party.

Yes, I do have all of the candy land props(except for the candy jars. They all went home with party guests but they were all bought at Target). Yes, I would be happy to loan them to anyone local. NO, I would never rent them to you. Please know you are so welcome to borrow them.

Yes, I do have most of the Luau props, but the larger props are permanent fixtures in our back yard around the pool. The beach hut and tiki bar can't be moved, but the rest of the items are packed in a few boxes. You are welcome to use any of it if you would like. Remember that much of the decoration was fresh fruits, so those have long ago expired. Hats, leis, relay pieces, lights, beach mats, etc. I do have.

12. Are you enjoying your new home?

Yes. We are so blessed to be here. I miss our little yellow house, but mostly because of all the memories that related to our time since Ash arrived there. We are busy making new memories in this home and we are loving it. Some days I just sit in the family room and look around trying to figure out how we got here. The extra square footage is such a blessing. I watch Ash scoot from room to room or down the long hallway and I try to freeze that image in time. This will be the house she takes her first independent steps in. I walk down the hall toward the game room and the sounds of Allie and her dad playing pool fill my ears. A smile comes across my face. She loves hanging out with him back there. I listen to Blake and his friends run from room to room playing hide and seek and close my eyes burning the sounds of the chase into my memory.

The thought of spending the holidays here have me smiling. My siblings are bringing their families for Christmas and its going to be such beautiful chaos. I can't wait to have them all back here. The four bathrooms made it so easy to host them all for a week this summer at Ash's birthday. This house is a blessing. A huge blessing.

I hope that answers some of the questions that have been asked lately. I 'm sure I missed some. I know I did, but its a start. Right? Thank you for your interest in our family. It is more than humbling to have you traveling this journey with us. Its been some very long years and knowing that you are still coming here to check on us and pray for us blesses my heart. It truly does.


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