Where do I begin?

Well, here I am. Its been 7 months 11 days since my baby passed away. Unless you have lost a child there are no words to explain the loss I feel everyday. So much has happened since she died. So much going on in our lives....without her. Everyday when I wake up I wait to hear her say, "mommy I waked up," then I remember she's gone. It hurts, like you wouldn't believe. She was so full of life and energy and happiness, that its still hard to believe she was gone in the blink of an eye. I still haven't dreamed of her. I think its my way of coping. I just don't think I'm ready to see her in my dreams.
A couple days after she died her nurse called me. She said that the autopsy revealed that her lung was so collapsed that they couldn't even force it open. They said no matter what she would have died soon anyway. Even hearing that I still blame myself. I know that I shouldn't but I still do. I go over that day all the time and it still hurts. I miss her terribly.

I don't know what we would do without Nakota. She makes our days better. Its so bittersweet to see that my girls like the exact same movies and shows even though they didn't get to know each other. Brynlee would love outrageous Nakota! Nakota calls her Brymwee. For awhile after she passed away, Kota would point to Brynlee's picture and then at the ground as if to say where is she? I think Brynlee waited for us to have a baby to keep us occupied. She knew I would fall apart if I didn't have another child to love. She never wanted anything to hurt me....and it still hurts like hell.

Brynlee's Obituary

Brynlee Belle Liston



"Our Little Princess"
August 29, 2007 ~ June 06, 2011
Brynlee Belle Liston passed away peacefully surrounded by her loving parents and aunt on June 06, 2011.

Brynlee was born on August 29, 2007. At 5 months old she was diagnosed with Spinal Muscular Atrophy and her valiant fight began. Though her time here was short, Brynlee forever changed the life of anyone she met. Her intelligent eyes and sweet smile would melt the hearts of those around her.

Although Brynlee's illness made her appear frail, she possessed an incredible strength of will, perseverance, and the ability to overcome incredible odds and challenges.

Some of her favorite things were playing with her baby sister Nakota, watching Spongebob with her Daddy, snuggling for hours with her Mama, and of course Cinderella. She recently got to have her first sleepover with her Aunt Tasha and her cousin Mia and she had the best time ever doing the things that other little girls get to do.

With Brynlee's passing, we are reminded that her life is one to be celebrated. The simple joys that she took in every moment and the laughter that she met life with are lessons that we can all thank her for. Although she will be missed each and every day, we will forever hold her in our hearts and remember the pleasures she found in life around her.

Brynlee leaves behind many amazing caregivers. Her wonderful pediatrician Dr. Tanya Jackson, her loving and very special Nurse Robyn, so many home care therapists and caring staff at Primary Children's Hospital, all treated her with an amazing respect, love and support that greatly enhanced her quality of life.

There is a special place in our hearts for Dr. Kathy Swoboda; because of her continued dedication, love and support Brynlee was able to beat some of her toughest medical challenges. Although a cure was not to be found in time for our Angel, we know that through the dedication of the medical community a cure for Spinal Muscular Atrophy will be found.

Brynlee is lovingly survived by her parents, Mark and Tara Liston, her baby sister Nakota, her grandparents, aunts and uncles, and her cousins. A private memorial celebration will be held for close friends and family.

Intubated again!

Brynlee woke up this morning not doing well at all. We called 911 and took her to primary's. I stayed home so I could feed Nakota before we got up there. I thought she would be intubated by the time I got up there but when i got there she was doing much better. They did a chest x-Ray and saw that she has pneumonia in her right lung. They started antibiotics and sent us up too picu. We decided Mark would stay the night with her because Kota has to nurse and doesn't take a bottle and they won't let her in the picu. So I headed home to get marks overnight things and to feed Nakota. While I was feeding her, Mark called and said that when I left Brynlee started working really hard to breath and that they were going to intubate her. They called the special doc in because she has a difficult airway. Thankfully he got it the first time this time. I headed back up there and got to see her before we got kicked out for shift change. I hate seeing her that way! It breaks my heart, she is like a totally different kid on life support. I hope and pray this is our only intubation this year! This is just sooooo hard on her.

Sooooo long!

So here it is almost a year after my last post. So much has happened that I don't even know where to begin. I guess I will let the people who are not my facebook friends know that we had our baby girl. Nakota Myckell was born on July 2nd, weighing 7 pounds 11 ounces. After a little deliberation we have decided to let you all know that we used a sperm donor to get pregnant with her. They now test donors for SMA, so that is how we knew she wouldn't be affected. It is the best decision we have ever made. The reason we are telling the world this is to let SMA families know there are other alternatives. We love our little girl to pieces and there is nothing we wouldn't do for her. She is one million percent ours! We are an open book, if there are any SMA families out there who would like more info on how we got to where we are today, I would love to help.

Brynlee is doing amazing! The stuff that comes out of her mouth is hilarious. She keeps me laughing everyday. I'm not going to lie though, this three year old business is hard. She wants to do everything herself, lol! She has not made any significant change in function and her scoliosis hasn't changed in a year. We haven't had any hospital stays since April and hope to keep it that way. We just had pictures done by our friend Pete so I thought I would post them. I promise I am going to start posting more often!










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We are HOME!

I am such a slacker. I just cant seem to get up the energy to get on here and post. After 15 days in the PICU with a virus that is like RSV, Brynlee and I are home!It was a long scary one this time. Thankfully she was only intubated for a few days. Brynlee has this little panic thing that she does now when someone else is doing her treatments. She even does it to me sometimes. She starts hyperventilating which closes off her throat, her sats then drop with lightning speed. The lowest O2 we saw was 30. Even though her lung was collapsing I am certain that this had a little bit to do with her intubation. They were doing a treatment on her when I had gone to lunch. Anyways her throat closes and doesn't let any air into her lungs. She starts turning blue and gets very lifeless. We have to put her Bi-pap back on, crank up the O2 and shift her neck so that she cant close it off. When she can't fight it anymore her O2 starts to climb again. They started giving her drugs for a while there during her treatments for her anxiety. She started telling all the RT's that mom was going to do her treatments.

They put a pic line in after I kept getting on them about taking so much of her blood. I can't believe how much blood they think they need everyday for stuff that is not going to change her treatments anyways. I told them that she was already on antibiotics and to stop taking so much. She is now Iron deficient, HUH, WONDER WHY?!! The Pic was great for us because it wasn't in to long and she didn't have to get anymore pokes. Her IV's kept going bad anyways. Her veins are so small.

I had a hard time this visit because it took three docs to do everything. It took 3 to intubate and 3 to place the NJ(feeding tube through her nose). Apparently my little ones anatomy is a little out of place. Her stomach had stopped working the way it was supposed to and she wasn't digesting anything which is why she needed an NJ even though she has a g-tube.


After many nights of sleeping on an uncomfortable chair while 6 and a half months pregnant we got home on Saturday. We got to have our princess home for Easter and she loved decorating her eggs. I am still doing her treatments every 4 hours during the day and every 5 at night. I am loving the fact that we got her a big ol queen size bed. Now I just sleep right next to her when she is sick and Mark comes and wakes us up when its time for her treatments.

I HATE SMA!

I know I haven't been updating and I will soon I promise.

SMA took another precious baby today and I can not stop crying for this family. This is the second son they have lost to this cruel and deadly disease. Hodges will be forever remembered. Ashley we are so, so, unbelievably saddened for your loss.

http://dailylivingtodie.blogspot.com

Chase Community Giving on Facebook

The Gwendolyn Strong Foundation (http://www.gwendolynstrong.com/) received a wonderful opportunity to win a $1 Million dollar grant from Chase Bank because of incredible wide ranging support, but now they need help on getting the word out there letting people know how to vote starting January 15th. And because you can only vote for GSF one time in the final round, we need to work extra hard to get beyond our networks and reach new people to vote for GSF. With your help, together we WILL see an end to this cruel disease!

So, in addition to VOTING, please commit to at least 3 things YOU will do from January 15th to January 22nd.


•VOTE: go to http://voteforsma.com/

•Email friends the voting link

•Post the voting link to your Facebook status all week long

•Blog about GSF and the $1M miracle to cure SMA

•Twitter the voting link

•BE ANNOYING (we mean persistent:) ALL WEEK LONG! In addition, here are some of the creative plans brewing by our supporters. Will you go the extra mile by doing one of these, too?

•Flyer ---> Download, print, and pass out our campaign flyer. This is especially useful for large groups or people who you don't have email addresses for such as schools, churches, and businesses who you have a personal relationship with. Click here to download the flyer.

•Make it Easy ---> Have your home or work computer open to the voting page - http://voteforsma.com/ - and tell every person you see to vote. Each person has to log in, but that's it. Simple and brilliant! People are setting up a voting station at local places in the community. Could you set up a voting station at your work or somewhere in your community?

•Contact Groups + Organizations ---> People have asked the organizers of groups they belong to to get involved by emailing a personal plea with the link - http://voteforsma.com/ - to sorority lists, mom's clubs, company lists, book clubs, alumna and professional organizations, etc. potentially reaching thousands of members! Do you belong to a group who would send an email to its members???

•Direct Message Facebook Friends ---> Since this is on Facebook, a direct message with a personal plea to all of your FB friends goes a long way. So in addition to posting it on your status, send an email to every Facebook friend. In fact, on http://voteforsma.com/ there is a button that reads "Invite a Friend". By simply clicking this and checking the boxes, you can message your FB friends to vote for GSF. Will you take this extra step?

•Contact BIG bloggers ---> Several people have or are planning to contact bloggers with a large following they think would be a good fit. Imagine if hundreds of people blogged about GSF and posted the video! Do you know any bloggers you can ask to help?

•Get Students Involved ---> One teacher incorporated GSF into her lesson on "grassroots" and posted the voting link - http://voteforsma.com/ - on the board for her students to write down and visit at home. They are excited about making a difference. Come Jan. 15, I smell a homework assignment :) Do you know any high school or college students willing to campaign for us on Facebook?

Please vote for The Gwendolyn Strong Foundation sometime between January 15-22. We NEED your help.

THANK YOU SO VERY, VERY MUCH!