Brynlee's Life

 

Bryn is the most loving, stubborn little girl I know besides myself and her dad.  With everything that has happened to her in her short life of 6 years, it's amazing to me that she is so happy and positive.  She is good reminder to me of how good life is no matter what hardships you go through.  I am very very grateful that her illnesses aren't terminal, but she will live with them for the rest of her life along with some potential others.

After everything falling apart the last couple months, my amazing friend told me to do a fund raiser for Bryn to help pay for her medical bills.  Go to the link and check it out.

gofundme.com/brynleehatch

This is what it says.  Please share it with your friends and family.  I love you all.

 

Brynlee Hatch is the 6 year old daughter of Ben and Starlene Hatch.  She is also the little sister to Aiden and big sister to Kynzee.

 

Brynlee was recently diagnosed with Lymphocytic colitis, Esinophilic Esophagitis (EOE), Lymphocytic Proctitis (lymphocytes in the rectum), and Lymphocytes in the duodenum, which the pathologist said was seen in Celiac Disease.  The symptoms of these diseases include chronic diarrhea, vomiting, weight loss, severe cramping and stomach pain, among others. 

An Allergist put Brnylee on a complete elimination diet free of dairy, gluten, wheat, nuts, peanuts, soy, eggs and shellfish to treat the EOE and Celiac.  The same week that Brynlee got diagnosed with these diseases, her father lost his job and the medical insurance that came with it.  We desperately need help paying from Brnylee's medical bills and special food expenses.  We also need help getting the funds to get Brynlee the treatment she needs at the Denver Children's Hospital a hospital that has actually seen the Lymphocytic Colitis disease in a child. 

Please help our longing, fun spirited, precious little girl get the medical help she needs to be free of pain and debilitating symptoms.  Thank you for your gracious love and support.  Read further to know the rest of Brynlee's story.

 

When Brynlee was 6 months old she stopped growing.  By the time she hit her first birthday, she still only weighed 12 pounds.  She had test after test done with no answers.  Then at 14 months she developed chronic severe diarrhea .  With her weight still being at 12 pounds, she began to drop lower.  After seeing 2 gastroenterologists at the Children's Hospital in Salt Lake City Utah, she was finally taken to surgery at age 2 to help determine why this precious baby was not absorbing any nutrients.  2 weeks later the doctor called us with the news that our baby had a disease that was not seen in children but in the elderly 60-80 years old, Lymphocytic colitis.  The disease is only diagnosed by biopsies taken of all parts of the gastrointestinal tract.  The doctor did not quite know how to treat this illness in a child.  They tried various medications that did not help much.

Brynlee is now a 6 year old loving little girl that has dealt with the chronic diarrhea, stomach pain, and multiple hospitalizations due to severe illness and dehydration her whole life.  6 months ago her symptoms became worse.  Not only did she have to deal with the pain and diarrhea, but she developed vomiting and extreme pain after eating anything.  We took her to see the 4th doctor who looked at her pathology report from age 2 with extreme disbelief.  She told us that she didn't believe that this disease could be plaguing our daughter.  As her parents, we left frustrated and disappointed.  Finally after many requests from us as her parents, the doctor did another biopsy of Brynlee's colon and esophagus.  We waited another 2 weeks for results.  In the meantime, Brynlee was losing more weight and becoming more fatigued to her already very small, weak body.  To the doctor's surprise, she still had the Lymphocytic colitis plus Esinophilic Esophagitis (EOE), Lymphocytic Proctitis ( lymphocytes in the rectum) and Lymphocytes in duodenum, which the pathologist said was seen in Celiac Disease.

The doctor came out and told us to see an allergist for the EOE and that she didn't want to treat the lymphocytic colitis because "It's just not seen in kids."  We were furious.  Just because they have never seen the disease in a child in Utah doesn't been it's impossible.  We want our baby girl to get better or at least not be in chronic pain and so fatigued all the time.

Love the Hatch's

 

Growing up

I can't believe how behind I am. Since I'm so behind I will just catch up on the main events in our life since I lasted posted in January.
My babies went back to school last month. I really can't believe aiden is in 4th grade and bryn in 1st.  So far both of them love school. It's a little different for bryn and not being able to eat the same things as her friends.  She tells her friends that her charm bracelet is a reminder to her that she can't have her favorite foods.  Although there is only 6 charms on the bracelet, we weren't able to add everything she can't have. It's easier for her to remember what she can eat. That whole story will come later as part of my catch up.

I chopped.....

I have hated my hair for so long.  It use to be my favorite part of me in high school.

When I lost half of it in the summer of 2012, it has never really recovered.  I even tried Ovation cell therapy.  Ben had promised at one time that if I maintained my weight at 90 that I could get extensions....well he didn't realize that they were 300-500 dollars.  So now that I have maintained 5 pounds above that for 9 months I figured I would just cut it and cut all the damage off that it would be a heck of a lot cheaper and save for the extensions.  I have never had an A line cut.  It has been shorter when I got married but not since then (11 years ago).  My kids asked it I could glue my hair back on.  They have never seen me with short hair.  It was a whole new look for them to get use to.  I actually love it!!

Bitter Sweet 2013

Wow 2013 was such a bitter sweet year for us.  Ben and I both thought that 2013 was going to be like the past 4 years.  We didn't even say to each other that "This year we WILL have a house" like we had previously.
January was typical in our family with hospitalizations of at least one of our kids.  January seems to be the month of severe sickness in our family.  (YIPEE) was a joy to look forward to.
February was incredible with a trip to Thailand for Ben and I.  What an incredible place to spend our 10 year anniversary.
March:  I can't really remember anything that happened that made a significant impact.
April:  We lost my uncle due to an unexpected illness.  I shock to my poor mom and her family. I had my first life saving experience at work that will forever stay  in my mind.
May:  I started to teach a fitness and nutrition class at work to kids age 3-13.  It was a huge success and I loved it.  It made me feel important and I got to use my degree (finally) besides my every day life.
June:  We lost another uncle (my dad's bro in law) to suicide.  Very very shocking for the entire family. We lost my grandma unexpectedly to Alzheimer's a week or so later.  Another blow for my mom and her family.  It was a numbing thing for me.  I took care of my grandma for 3 years before they had to put her in a care home.  We were very close.  I miss her tremendously.  I had ups and downs with job interviews.  Brynlee turned 5 and started seeing a pediatric endocrinologist. On June 7th, we finally got to have our own house.  A tremendous blessing!!!  I finally got my baby grand piano after a lifetime of waiting.
July:   We lost Ben's grandma unexpectedly to kidney failure.  By this time I was done with death, but 6 more people we knew would pass away before the end of the year.
August:  Aiden turned 8 and was baptized.  He finally got his tarantula spider after 3 years of waiting.  Ben decided to get one a couple weeks later.  (they are kept out of my sight at ALL times).
My position changed at work, which has become a nice change from last year at this time.  This kids started at a new school.  Brand new to everyone.  Finally a charter school that focuses on science, technology, engineering and math.  My baby girl started kindergarten.  Super hard for me for some reason....and her too.
September:  3 months in our house has just flown by.  I started new projects to finally be able to decorate my own place.  Ben and I did more photography shoots together.  I love being able to share something with my husband that we both enjoy.
October:  Ben spent most of October out of town including on my birthday.  The beginning of October I decided I wanted to try a new hobby and paint.  Not just furniture, but artistically on canvas.  I learned it was really calming and such an amazing coping skill for me and dealing with stress. I have learned mostly from youtube.  It has made me look at the world in a whole other perspective. 
Novemeber:  Nothing too thrilling.
December:  Went way too fast.  We did get all of our Christmas shopping done on black friday.  I'm not honoring my recovery day this month which was on the 29th because of my massive relapse last year that nearly killed me.  I don't remember when exactly I decided I was going to get on top of the disorder without the help of treatment.  I did however, beat the illness again and I am now at a healthy weight and have my life back.  It's all up hill from here.  One day at a time.

My kids and husband are amazing.  I honestly think I would be dead if it wasn't for them.  I can't even say in enough words how lucky I am to have such an amazing, patient, and loving husband.  He is incredible.  I am very thankful to Heavenly Father for helping me through this year.  There were so many ups and downs and everyone has, but it seemed a lot different to me then most years.  Maybe because I have promised myself to try something new every year as a way of dealing with life's curve balls.

Discovered Talent

Acrylic first try at painting

Second Acrylic

First try at oils

Second oil

3rd acrylic

3rd oil

4th oil

5th oil

So I decided to try and find something else I could do to cope with stress besides play my awesome piano.  I can't play at 9:00 at night when the kids are trying to sleep.  I decided to try painting.  I first tried Acrylic paints at the top.  I was surprised that I could even do anything with them.  I have never taken an art class in my life.  Actually it has never really interested me.  I can draw stick figures but that was all I thought my artistic talent went.
I then ventured to oils, which I LOVE!!!  Thanks to youtube, I have learned to do some landscapes, and seascapes.  I don't draw them first...remember I can't draw.  LOL.  I am actually proud of myself for trying something new.  This year has been ups and downs but very rewarding.  Ben and I have learned a lot about photography and have been able to do quite a lot of photo-shoots  for people.  I could never measure up to my friend (Aspen) and sister-in-law that are amazing, but it is something we enjoy doing together.  That is mainly why we do it.  I love that we can play our intruments, do musical numbers and just mess around with music together, and I love that we found something else we enjoy.  It really helps strengthen our relationship.
Ben has been an amazing support in helping me try and paint.  He is so encouraging and makes me feel so good.  He has a few hanging in his office that he says are his fav.  He is more then willing to help me get the stuff I need in supplies.  Of course he is very smart in everything.  I value his opinion greatly.
 I seriously have random thoughts today.
I have another commissioned painting that I have done for a co-worker that I am not quite done with that I will post soon.
If anybody needs christmas gifts or would like to commission a painting or has any ideas let me know.  I'm up for trying anything.

family pictures

We finally got family pictures done.We didn't really do any last year except in June at my brother's wedding, and we have all changed quite a bit since then.  I really have done horrible this year with posting.  I can't believe how fast the year has gone.  I'll do a year in review next month.

Temples

The kids wanted to see where mom and dad got married.  I have wanted to do a photo shoot of the temple anyway to hang in my living room.  Kynzee called it Heavenly Father's Castle.  So when we drove past the bountiful temple and the Brigham City temple this last weekend, she yelled out, "there is father's castle."  I love that she thinks that.  I want to take them to all the temples around our house.  We are surrounded and we feel very blessed.

Life is still good for us.  Being in our own house has  been amazing.  If life were perfect, I would be able to stay home and be a mom and raise my beautiful children..instead of someone else's.  I struggle with that more then anything right now.  I get an hour or so  with my kids every night by the time I get home from work.  It is SOOOO not worth it to me.  However, the insurance saves us.  I am working for insurance only and daycare.  I see only $20 a paycheck.  The rest is insurance and given right back to the place I work for kynzee and brynlee's daycare.  The insurance has been an amazing blessing and has saved us over $1500 a month.  You just can't help but be grateful when it was $1500 a month for all of Ben's diabetes medication, supplies and now his diabetes supplies (strips) are free and insulin is $50.  We are hoping  Ben will get a change in his insurance at Maverik this month.  This will allow me to go part time and be a mom, which is what I want most in the world right now.  I am very grateful for the little things.  I am grateful that my kids are kept safe when they get home from school and have to be by themselves.  I am so grateful for Aiden and his caring, loving personality.  He takes such good care of his sisters and is constantly concerned for them.  I am very blessed to have such amazing kids that are very forgiving (most the time) of my horrible schedule.  They are my life!!!!