Amy and Aliyah

Looking back from a future date,

Some friendships seem meant to be.  One day in June 2012 at Primary Children's Medical Center, I was struggling with the stress and anxiety of going against the grain of our team's recommendation for the stent and moving forward with plans to seek a second opinion from the Esophageal Atresia Center at Boston Children's Hospital. I went to the Parent Center to use the computer and chatted with the kind woman at the desk, Cindy.  I'd gotten to know Cindy a little from our long stay there the previous year and many visits since, and so I opened up to her about our difficult decision and how nervous I was, and her eyes got big and she said, "there's another family that just did the same thing. They're in Boston right now, and you should talk to them, they are amazing."  She was right.


Once Cindy passed on my info to her, Amy contacted me quickly, and our conversation allayed so many of my worries about the logistics and details of that scary leap.  We managed to meet them in Boston on our first trip there, and they were a huge help as I worked to figure out the T rail system, hospital and pharmacy for the first time.  But more than that, Amy and her daughter Aliyah have become very dear friends.  We wish we lived closer to them, but just being in the same state is such a comfort, and that added up with all the other things about them makes them feel practically like family. We see each other several times a year at activities for special needs families, we try to stop and see them on our trips to see family out West, and sometimes we've been lucky, unlucky, whatever, to be inpatient at the same time in the same place.  Those times are my favorite, because the hugs and convos between friends who are both in crisis fighting for their children's health are incredibly healing.  Amy is so full of love and faith, it's a joy to be with her. Plus both of these chicas are just loads of fun.  Wherever they are, there's bound to be some sort of shenanigans.

Here are a couple of photos I snapped of them and the kids when we stopped at a fast food place near their house while driving home from visiting our West Coast family in 2014.  Amy and Aliyah surprised Audrey and Gideon with these cute turtle stuffed animals, who were quickly dubbed Boston and Austin by the kids, and those turtles have been among their favorite "fuzzy friends" ever since.

Amy is such a doll.  From my journal that day:  Oct 1, 2014: Met up with Amy and Aliyah for a quick stop on our way home from Oregon late Sunday night. Aliyah surprised Audrey and Gideon with these cute toy turtles, and they have played with them non stop ever since! Whenever we leave the house Gideon puts his turtle in his backpack, and asks if he can bring him in if it's a small place we're going, and asks if he can leave him in the car of its a big place we're going where the turtle might get lost. Audrey and he play with them all day and sleep with them at night. Thank you for being such sweet friends!

Aliyah, Audrey and Amy playing at Esplanade park in Boston, September 18 2012.  Does it look familiar? It was wonderful Amy who took the photo of Audrey and I on that happy day, the anniversary of Audrey's NICU graduation, the photo that's at the top of every page in this blog.

Oct 6, 2014 Audrey pretending she has turtle babies in her tummy.

March 27, 2015: While on a family trip to Zion National Park, Audrey and Gideon dictated this letter to Eden for their special stuffed animal turtles back home. They signed it from themselves and Cookie, his Christmas stocking kitty he currently takes everywhere. They said Cookie missed Austin and Boston, so they did this to help Cookie feel better. I love this little glimpse into their view of our time at Zion National Park.  The letter reads: Dear Austin and Boston, We are at Cliff Rose.  There are lots of pretty flowers everywhere.  It's JJ's birthday, and we had lots of cake and ice cream.  We played in the sandbox, went hiking all the way up a mountain, played with a yellow frisbee, and we watched Big Hero 6 in the night, and ate hot dogs and s'mores.  We had lots of fun.  from Gideon, Audrey and Cookie

Aliyah, Audrey and Amy Playing at Esplanade park in Boston Sep 18, 2012

Giving those toys was a simple spontaneous thing they did, but it meant so much to the kids. This kind of thing is what Amy and Aliyah do routinely, just spoiling the people around them and spreading kindness and love everywhere. Aliyah is a jewel.  Her smile lights up a room, and the children flock to her because she's so much fun to play with. She shines with a light that comes from the naturally lovely person she is, the exhausting battle she's fought, her faith in her Father in Heaven, and the love of her family. Amy also has a deep faith in and love for the Lord, and she shares that too in a way that is beautiful and comforting and welcoming and accepting of all beliefs.  She's so much fun to be with, and she's also a tough-as-nails mama bear when the situation warrants; her knack for street smarts has been a big help on many occasions, especially when advocating for her children.  And with a heart like hers it often seems that every child is one of her children.

Aliyah's medical journey is overwhelming to describe. This lovely teen has been through a long physical war, and her challenges have not become less through the years.  Amy summarized and wrote down her story at my request, and I know it took a lot out of her.  Thank you Amy, for sharing her journey.  Aliyah, we think about you all the time and are sending you so much love and support. I'm so impressed with the powerful young woman you are becoming, and all the ways both of you change the world for the better.  It's a privilege to be your comrades in arms, ladies.

Aliyah's Story, by her mother Amy

Here is our Angel. I have never really written her story before so get ready for a novel.

Aliyah was born March 9th 2001 She weighed 3lb 10oz.

She has the V CTE of the VACTERL Association

Audrey and Aliyah
cruising in the halls
of Boston Children's
while the mommies talk,
September 2012

(V) = vertebral abnormalities

(A) = anal atresia

(C) = cardiac (heart) defects

(T) = tracheal anomalies including tracheoesophageal fistula

(E) = esophageal atresia

(R) = renal (kidney) and radial abnormalities

(L) = (other) limb abnormalities

She tested positive for Methamphetamine when she was born and was then taken from her birth mother. As far as I know she was born at 31 weeks and had type C. She was born in Ogden but was taken to PCMC within hours and had surgery to fix the EA/TEF.  Birth mom was arrested, so this sweet baby only had the love and care of the kind nurses in the NICU. She was in the NICU for almost 4 weeks then went to an emergency shelter home for about 3 days. We found out about her and her 2 year old sister when we were asked to be their foster parents. She was about 5lb when we got her. Aliyah came to us with an apnea monitor on. We were told by the state and her doctors that she would outgrow all her health problems by the time she was one.

We adopted both girls when Aliyah was about 18 months old. She was diagnosed not long after that with failure to thrive. She also got RSV, Pneumonia, and influenza all at the same time. That is when they told us she had IGA deficiency. She has been life flighted and went septic on us. She was always sick and we spent a lot of time in the hospital. She had a NG or NJ tube for many years until 2006 when they did a Nissen on her because she was refluxing and aspirating so much. PH probe showed she had acid up to top of her throat 138 times in 24 hours and 18% of the time it was going in her lungs.

After the Nissen they put a G tube in which has been changed to a GJ tube. Doing the Nissen seemed to set off a different set of problems. She could not swallow her own saliva and would choke and aspirate that for hours and hours each night. She then had 15 surgeries in 18 months trying to resolve these problems. They dilated and redid the Nissen to loosen it but nothing helped, they took it down part way and did Bronchoalveolar lavages to see how much she was aspirating into her lungs. Then they took down the Nissen most of the way. It was either have her aspirate stomach acid or aspirate saliva and anything she tried to eat or drink.

Beautiful Aliyah cheering up Audrey
at Salt Lake Comic Con
April 17, 2014
Seeing her and Amy was the
highlight of the day.

At one point they told us to never let her eat or drink by mouth again because the stuff she could get down her esophagus would go into her lungs and the stuff that wouldn't go into her lungs wouldn't go down her esophagus either. We said, how do you sit at a table as a family and tell one of your children they cannot eat? How do not let them have their birthday cake even if it is only a couple bites? Every holiday, event, church activity, school activity involves food. It was then we decided to let her eat what she wants even if it is just a nibble. Within reason, of course she can't eat a big juicy steak. We learned to tell people if you can and would feed it to a 1 year old you should be OK giving it to Aliyah as a general rule of thumb.

In March 2012 I found out on Facebook about the EA team in Boston.  We did some fundraisers and went out there to see them in June. In Boston Aliyah met her very first EA/TEF child. Finally someone like her. She met many more in the year we were going out there for treatment. They found she had severe tracheomalacia still, her aorta was collapsing her trachea with every heartbeat so they did an aortapexy. Then a few months later they took her Nissen all the way down and found and fixed a Paraesophageal Hernia.

They also did manometry testing while in Boston and found she has zero motility in her esophagus, her stomach is paralyzed and she has little to no motility in her intestinal tract. The doctors in Boston have said they can't make a body have motility so there is nothing they can do to help Aliyah. She just had an Appendicocecostomy surgery done in Oct 2013 where we insert a cath into a hole in her abdomen and flush her system and bowels out each night, and that worked well until recently.  

In November 2014 Aliyah had a Tracheopexy done where they tied her trachea to her spine and they fixed a hole she had at the bottom of her trachea. Her airway has been much better since then. However when she had a high resolution CT scan last year the found another hole so we went back to Boston in May 2016 and had them look at it.  We have opted not to do anything about it at this time. 

Special hugs at the BCH Yawkey Family Inn 2012

They also found in Boston that she still has some Bronchiomalacia. The doctor said "I wish I would have fixed that two years ago but I didn't do it back then."  He also said her lungs are filling with scar tissue, nodules and inflammation because she is aspirating so often.  He told us to have her sleep sitting straight up but when we try that she drops her head forward and cuts off her airway. 

For the past few months Aliyah has really been struggling with tolerating her feeds as well as her flushes not working well.  She is in so much pain with the flushes and feeds that we are not sure what to do. The doctors are not sure what to do either; they believe it has to do with her motility issues and like I said above there isn't much that can be done about the lack of motility.

Despite all these challenges Aliyah is a bright, happy girl who is blessing to each person that knows her. She loves to bake for whoever she can, although she doesn't eat any of it. She loves to sing and was in her first talent show in July 2013 and in her first community play Dec 2013. Music is a big part of her life and brings her much happiness. She loves taking singing lessons and her teacher is amazing working with her and her airway issues.  Aliyah has a very big heart and has raised some money by baking and selling cupcakes for a family whose father had terminal brain cancer. It has not been easy to watch her face so many challenges and suffer so much. At times she will say "Mom I just wish I was normal." I told her everyone's normal is different. God has a special plan for this strong young woman. She has defied all the odds that were stacked against her from day one. If this girl doesn't give you hope I don't know what will. I am honored to be her mother and have learned that through great trials come greater blessings.

We've loved you from the first day we met, Aliyah!
Cheering you on, sending you strength, praying for a cure.