So many good and positive things were said while we were in Omaha. There was a little disappointment, but the excitement over the good stuff far out weighed it. I am going to do my best to share as much of it as I can with you.
EVERYONE who saw our Ashley had wonderful things to say about the way she looked. Keep in mind this team of doctors and nurses are the very ones who saw our sweet baby through the very worst days of her life. They have seen her before transplant when she was so weak and tiny and jaundiced. They have seen her go through transplant. They have seen her battle back from the edge time and time again. They are the ones who administered CPR to bring her out of her cardiac arrest. They are the ones who have fought to keep her alive. They are the ones who I am sure wondered just as we did if she would pull through. They are the ones who used the skills and talents God gave them to take care of a very fragile, very sick, very loved little girl. They are the ones who had a front row seat to the many miracles He performed in her life and in her health. I love this team of people and I respect their opinions and what they have to say. So when they tell me she looks better than ever it makes me smile. They thought she had grown, had matured, and HAD progressed. Those words were like medicine to a mommy's hurting heart.
Some of the biggest decisions made during our trip concerned Ash's future operations. We are going to wait until next spring to do her take down. We discussed her ability to remove her own bags and "finger paint" with blood from her bowel and they assure me she can not harm the loop of bowel that is outside of her abdomen. With this knowledge we have opted to wait and allow Ash to just be a little girl for awhile. Free from ICUs
and hospitals and Omaha. We would love to give her the opportunity to feel good and see what she can learn and accomplish during this time. They did agree to allow us to return to her eye doctor and get the remaining portion of her strabismus
correction completed. Ashley had the first half of the eye surgery last June and then we were called to transplant before it was time to complete it. They allowed us to keep her central line in hopes of getting her on the surgery schedule and having her eyes fixed. She has an appointment on Monday and we will know more after she sees her doctor. This surgery does not require her to stay in the hospital. She will be in and out in one day and will come home to recover.
We have also been allowed to reduce Ashley's medications list. She came home on 14 medications and now she is down to only 5. My favorite change in her meds
concerns the steroid she is required to take. Her Prednisone
will go from daily to every other day. YEAH!!! This is huge and it is the first step in weaning her off of it and hopefully she will be steroid free soon. We will also begin weaning her blood pressure med and in a matter of a couple of months she may be free of the patch that she currently wears. We are very excited about this. Two of the remaining three meds
will be stopped at her one year transplant anniversary. So in September there will be a very real possibility of Ash only being given her Prograf
(which will be a lifetime anti rejection medication) and her every other day Prednisone
. These are huge changes in her routine and I believe it will make for a happier, more "normal" little girl.
Relaxing was the next thing that came up. We have been given the go ahead to try and relax with her a little bit. Not that they actually believe I will be able to accomplish this. What does this mean for us? It means that they said "GO. ENJOY taking her to visit your family.(this will include her birthday:)" We can take Ash into a restaurant, take her on vacation with us to Colorado as we watch the Tarheels
play in a national tournament, take her out in public, and if I can figure out how to keep her quiet we can take her to church. She will not be able to go to the nursery because she does require special care with her central line, mickey, and ostomy
, but if she would sit still and not jabber too much we might be able to sit in the balcony as a family on Sunday morning. This would be wonderful!!!
Food was next on the list. Ash can eat just about anything she wants except for sugar and sweets. She can try anything she would like. They even told me she could have sugar free koolaid
(of course I would never do this, but it was nice to hear). Teaching Ash to eat will be a huge undertaking and we have been working on it, but just knowing we can feed her mashed potatoes brought a smile to my face. To this point she has only eaten organic baby foods and only had sterile water to drink. Her world is about to open up and we are excited about it. She can have a banana! I can't wait to see her try that again.
Of course we discussed her delays and the fact that she is not mobile at two years old, but our transplant doctor told us that if she has not made progress(which she BELIEVES she will) by the time she is three then maybe we will look a little harder at it. For now we are going to let Ash be Ash and continue working hard, but more importantly we are going to focus on loving this little one and enjoying each baby "step" she makes toward a more normal life. There will always be someone who out there who will want to label her and diagnose
her with something, but we aren't really interested in those labels. Ashley is amazing and wonderful and her life is miraculous and we are privileged
to be her mom and dad. One day at a time, one milestone at a time, one miracle at a time. This is our plan.
What a joy it was to visit with our friends. To share dinner, or conversation, or hugs, or lunch, or smiles in the hallways with them all. So many we didn't have the opportunity to catch up with, but we will see them next time. I couldn't bring myself to step onto the floor of the PICU. I'm not there yet with my own set of memories. A lot of tears were shed in those hallways not only for my baby but for my precious friends children. Someday I believe I will be able to go there, but this was not the day. I am just thankful to be raising my Ashley outside of those walls.
I know this post is long so I will close. Thank you for being here today. Thank you for praying and encouraging our hearts on this journey. Enjoy your evening with your families. Trish