There are lots and lots of questions asked us every single day by many of you and so today I thought I would try and answer a few. None are that earth shattering. Just some housekeeping type issues that people are asking about.
1. Why are there no commenter's
or supporters on this blog?
I'm so sorry it may look that way to those of you who are new here. The truth is that thousands and thousands of people read, pray, and comment. We have chosen to keep those comments private and confidential. In the early years of this journal we had them posted and everyone could read what everyone else said to us. Many, many times this got out of hand. Their were arguments, again and again where some defended us and others tore into us. It got ugly on several occasions and it caused a lot of discourse and pain. The best thing to do was to enable public comments and have them sent to my personal email. That is where your comments now go. Since making it private, you have been able to open your hearts to us with a freedom we rarely ever saw from you. It upset a few not being able to read what others had to say, and for that we apologize. This has been a much better, much healthier way for us to read what our commenter's
what to say to us. Please don't feel sorry for us. There is no need. We appreciate each and every reader who loves our Ashley and prays for her. Your comments are welcome as long as they are supportive and constructive. If they are not then we ask people to leave them t themselves as words can do a lot of damage and once said cannot be taken back. Thank you for your concern and your support of us.
2. What style of central line dressing do you use?
Cathy, we too use Coram
out of Houston as our supplier and they have sent us everything they say they have as well. We have yet to find what we like. We used to use a split, IV, tegaderm
that had a white fabric style border around it that worked the best. They say they can't get that for us so we are making the best of the situation. Her dressing is very complicated since I secure it like her life depends on it. I guess it actually does. I use the rectangular shaped dressing they send in their kits that has the tiny slits cut into it? Does that sound familiar? After sticking that over the actual site I make a loop with a strip of the tape around the immediate portion of the catheter that sticks out of that tegaderm
. Then I coil the catheter so their is no extra length to get caught on anything and I stick another rectangular tegaderm
over that. This one has no slits cut into it. I then use the strips of tape that come on the tegaderm
to secure the extending lumens
not once but twice. In the end I have only the end of the lumens
out of the dressing making it as short as possible.
We have tried to use the coiled tubing with her to give her more freedom but for reasons unknown and unexplainable she is TERRIFIED of it. Honestly, she screamed like we have never seen the moment we hooked it to her. She was so scared she shook and trembled and her reaction was out of control. We decided it best to not use it. If I have it lying around and she sees it we get the same reaction. There are some things that don't make sense to us and we just keep on keeping on anyway. This fear of spiral tubing is one of them.
Hope that made some sense.
3. Where did I buy her "dinosaurs"?
I found them at the gift shop in the hospital at Sutton Children's in Shreveport, Louisiana. I haven't found them any place else yet. I keep my eyes out just in case, but have never seen another one. I wish I could help you locate one, but I just don't know where to get them. The next time I am over there I will be happy to ask the manager of the gift shop and perhaps they could let us know where they ordered them from? I'll give that a shot.
4. Does that mean they said yes to transplant her?
Not exactly. Not yet. We have to have clear cultures. They want to review her developmental packet. They think its possible, but as far as I understand haven't made a final decision if its what is best. Ultimately, since its possible I believe they are going to leave it up to us to decide if and when we want her listed. This is the best answer I can give you at this time. Its all a little confusing and I have not yet talked to them this week.
5. Are we actual friends with Kylie and Emerson and do we know them?
Yes. We are friends. Yes. We do actually know them. All three girls received their transplants at UNMC
with the same team of surgeons
. We all know each other. We are friends. Its a different type of friendship then you may imagine though. We don't sit down for coffee, go out to lunch, or shop together. We support each other, understand each other, and pray for each other. Its a deeper level of friendship that gets formed when you watch your daughters fight for every breath, and every single day of life. We have all been changed by our tiny girls. We are better people because God blessed us with these amazing gifts. We get what each other is talking about without hesitation or confusion. I can read their words and they mine and we know exactly what the other's heart is feeling because more than likely we have felt those exact same things at some point in this journey. I am honored to say that Erika and Joan are my friends. Honored.
6. Did Ashley Kate's hair grow back? It looks so long in her photos.
Ashley Kate's hair is in the process of growing back. Thankfully she did not lose the top layer of her hair and that is what you see in her pictures. If I were to life it up and take a photo you would see that all the way around, from the top of one ear to the other that it is about 2 inches long. That's progress! It had fallen out or broken off to the scalp and when she came home there was essentially no hair other than the top. Allie and I are MORE than grateful that the top layer remains. Her hair is no longer thick. No longer as beautiful as it was before explant
, but we do have the ability to make it appear so. We braid Ashley's hair after it is shampooed and allow it to dry in the braid. When we take it down it is wavy and appears thicker than it actually is. We have learned to use this to camouflage
the short hair that is on her head. You will not see it pulled into a ponytail here in her pictures. I took her out of the house one time with it pulled up and the stares and questions were unbelievable. One person asked me if I had shaved her head like that on purpose! I was stunned anyone would think I would do such a thing. Ummm
...no, I would never shave my daughters head on purpose. We are blessed to still have that top layer. So blessed. It makes it possible to conceal the loss of most of it and people don't stare or feel pity for Ash when they see her. With or without her hair she is beautiful to us, but I DO prefer her with hair. I just do.
7. How is it that you are able to attend so many ballgames in Ashley's condition?
This is not an easy one. First let me share that we have 3 children who are all loved unconditionally and who all deserve to have two parents who support them. That is how we parent. Blake and Allie would completely understand if I never went to any of their games, but we believe it is important for them to have me there and for me to get to be there while I am home. Our parents help us. My mom came here for over 2 months once we got home and she sat with Ashley Kate while I traveled to the games. She went home for a while and now Dave's mom has been sitting with Ash. She will stop at the end of this month and then I believe my mom will come back to help us. Its a huge sacrifice on their parts. Dave and I know and appreciate this. We choose to be as active and as involved as possible in Blake and Allie's lives even though Ashley is sick. Its how we parent and we don't want that to change. It takes quite a bit of support to pull it off though. It may be hard to understand our devotion to being there, but its ok
if you don't. My kids play ball. Its what they do. Its what they have always done. Some kids sing, act, play instruments. My kids play baseball, basketball, soccer, volleyball, etc. Its who we are as a family. If Ashley Kate had the ability then she too would have been on that soccer field at the age of 3!
8. How did you obtain the Omegaven
Long story. Lots of follow up. Lots of not taking no for an answer. I think thats
what it takes. The FDA has to see that you aren't going to stop asking even if they say no. We just didn't quit. I would be happy to answer this at length in a private email. I will share with you that when we went back for eval
we were told that since our pursue of the drug that they have been able to help several families across the country obtain it. They learned from our case and were better prepared to assist. That made a smile come across our faces. If the struggle ultimately
made it easier on someone then it was worth it. I'm happy to say that Ash is doing amazing on it.
9. Did you ever share pictures of Ashley's birthday party from the hospital?
No, I didn't. Not because I don't want to though. The truth is there is an awesome slide show we put together on my old computer that died. We haven't yet transferred it to the new one so I have not been able to post them. I guess if your still interested I could try and get that done this week. It was an amazing night. Filled with some of the best friends we have in the world. All there to love on our little girl. We walked out of that room feeling so blessed that night as we watched Ash continue her fight toward home. Thanks for asking and reminding me.
Like I said, nothing earth shattering just some of the repeated questions we get asked and a couple of person to person questions that needed to be answered. Thanks for putting up with the "housekeeping".
Have a blessed day.
Oh yeah, 10. Is that a Christmas tree still up in Ashley's playroom?
Yes, it is. And in the family room. And in the dining room. And in Allies room. I haven't taken anything down yet. It makes the house so cozy and me so sad when I have to pack it away so I have chosen not to just yet. I will. Eventually. I just don't need anything else to be sad over most days so I have avoided it all together.
Love ya, Trish