Imagine Not Being Able To Nourish Your Child With Food Or Not Knowing What Her Condition Is
What ends of the earth would you go to in order to save your child’s life?
The struggle of having a child that is sick is hard for anyone. The physical, emotional and mental demands of all the tasks that go along with the day-to-day care can be brutal.
#prayforKallista She can only tolerate dairy and soy free Breast-Milk and insurance refuses to help.
What happens when you have the added situation of not knowing what your child’s condition is or how to help her? What about if you already lost a child that possibly has the same condition?
How does one cope with it a second time around?
Her older sister died 6 years ago from what looks like the same symptoms.
Imagine losing your first daughter and then your second goes through the same thing and no one wants to help;( This is a short part of our story.
This is the story of Kallista and Her Family
Who is Kallista?
Kallista is a beautiful little toddler who arrived with some pretty little smiles and plenty of baby gibber to tell you about. When she isn’t running back and forth to various doctors or going through her therapy sessions she is busy trying to learn about and figure out the world around her.
What is Kallista’s typical routine on a day-to-day basis?
A day to day schedule for our family right now is pretty crazy!
6AM – Wake Up
Kallista must be accompanied at all times while on her tube so my oldest son and I have Kali duty. Which means to get her dressed and food ready. While the other person gets breakfast together, lunches made and everyone dressed and out of the door by 7AM
7:30AM – We drive an hour to Phoenix for feeding therapy
9AM – Feeding Therapy with myself and the 3 littlest kids. Caleb, Kallista and Blake.
10AM – Drive Back to drop Caleb off at school by 11AM
11AM – 1PM – Nap-Time for Kallista. She will only nap if I am holding her. So lunch is made late or as easily as can be for Blake. I typically don’t eat.
Some days we have feeding therapy at home or other doctors visits.
1PM – 3PM – Play-Time. Meaning I keep Kali and Blake entertained playing outside or reading.
3PM – Pick-Up kids from school
3:30PM – 4PM – Wind down from school and snack time
4PM – 6PM – Kallista is usually napping during this time in my arms
4PM – 5PM – Prepare dinner if Kallista is awake and willing to play with her older brother or we do something easy if she is having a bad day
5PM – 6PM Dinner and clean up
Kallista gets her medicine between 6PM – 7PM
8PM – Bath time and bible reading to have kids in bed.
Prepare her milk and her nightly food to have her hooked up by 8. Bed time for Kallista is usually 8PM – 9PM depending on her day. I lay Kallista in her bed about 10 or whenever my husband gets home from work.
Most days consist of many phone calls regarding authorizations or fighting with insurance just to get basic medical needs met. I also try to find time to share her story while she is sleeping. Says mama Jen.
How exhausted by this rigorous schedule did you feel? Let me tell you as a mom to children with various medical needs… It is physically, mentally and emotionally exhausting. It literally drains everything you have away from you. Many times you feel like this empty shell or even a real life zombie. You literally survive off of adrenaline for the most part.
We Need Your Help To Share Kallista’s story! Get Doctors and the Insurance Company to Pay Attention!
What Condition Is Kallista In
After several months, Kallista was diagnosed with several types of Eosinophilic Gastrointestinal Disorder.
Characterized by an abnormally higher number of eosinophils, a type of white blood cell, in different parts of the digestive track, EGID includes several conditions that can effect the digestive system in otherwise healthy infants and adults. There are four types of EGID based on where the eosinophils are found — the esophagus, stomach and small intestine, colon and blood and tissue.
Kallista has been diagnosed with all four types of EGID, mama Jen said.
The condition is often linked to a food allergen. Kallista is allergic to soy, corn, gluten and dairy so she can’t tolerate formula.
Picture Yourself Trying To Find Enough Breast-Milk To Keep Your Child Alive
[clicktotweet]Breastmilk Wanted For Baby Kallista, Her Life Depends On It. Medically She Cannot Have Anything Else.[/clicktotweet]
Mama Jen’s daughter is allergic to all food and only can feed her breast-milk. They are still looking for doctors to help find food for Kallista. She has failed every food tried including various formulas except breast-milk. If you want to donate dairy free milk please contact the milk bank we use at 817-810-0071.
Can You Help Donate Life Saving Dairy and Soy-Free Breast-Milk To Kallista
We are currently getting milk from Texas milk bank. However they frequently run low on dairy free milk. Donors would be a blessing. We have contact information for the milk bank. I used to nurse Kallista during the day. I pumped and nursed until her first birthday but decided my mental well being was more important than pumping.
A mom and dad’s plea for your immediate help, support and attention to help Kallista and her doctors figure out what is making her sick, what is threatening her life and how they can attempt to cure her.
She is considered disabled and has state insurance. It is because of her state insurance that we are not able to see providers outside of Arizona. We are stuck here fighting with insurance to get answers and help.
A Mother’s Agony: Having to relive Allyssa’s life when Kallista was born was one of the hardest things I have ever been through. Everyday I thought she would die. Every day I was on my knees begging for God’s mercy to allow her to stay. There were so many times we ended the day with no food for the next and with God’s amazing hand he provided her milk. During her many hospital stays there are times I don’t eat because we don’t have the money.
You can help Kallista get to her appointments and receive expensive but life saving breast-milk with a small donation here. With breast-milk costing roughly $4.00 per ounce and going through food trials, nourishing baby Kallista seems impossible. She gets at least thirty-four ounces per day, that is a hefty $136 per day!!
A Family’s Turmoil: Kallista’s life has been a whirlwind. Having little support and not enough money for my husband to be home, we have had to make really hard choices when it comes to what to do going forward. We spend $500+ a month just in gas to go to doctors appointments. My children’s lives in the beginning were staying at doctors visits and hospital stays. Not being able to be with mom and dad. Luckily my mom has helped as much as she can but besides her support we have been left to fight and support Kallista on our own.
A Note From Dizzy Mama Marilyn to Mama Jen:
Kallista is most definitely in my prayers and I am sharing her story to reach more people. I have been through some of the things you have gone through. Trying to find answers. Trying to get doctors to spend a few more minutes with your child so they can find a solution. I too have spent countless hours on the phone with insurance companies and doctors offices just getting my boys medical needs met.
My boys don’t have what Kallista has, but I know what it is like when your child stops growing and is in failure to thrive. I know what it is like having a child that is allergic to both dairy and soy, with gluten intolerance’s. I know what it feels like when the doctor announces your child is no longer growing and that their brain has stopped growing.
With one child who was in failure to thrive from age one to age six, whose brain stopped growing at two and a half years old … I know what the whole thing is like. He couldn’t consume any types of foods and I was forced to stop breastfeeding and dry my milk up. Finding a milk that could sustain him and one that he could tolerate was tiresome. He had his first meal when he was three and a half years old, just six months after having surgery on his esophagus to correct it.
I wanted to give you a glimmer of hope. This same child is now twelve years old, has a very high IQ now, his brain began growing again when he was around five years old.
I really hope that Kallista has this same opportunity. Some more hope, his little brother stopped growing at age two and recently at the age of eight and a half shows signs of beginning to grow again.
I am virtually holding your hand Mama Jen, helping you get through the red tape of simply feeding your child. No Child Should Ever Be Denied Food! I am sharing this heart wrenching story in an attempt to get Kallista some donor milk. Insurance should be picking up some or all of the costs involved with getting Kallista her food.
The health insurance is being completely neglectful. I want to help you find some respite relief, even if it is once a week for you to decompress a little. I am asking your local community to open up their time and to possibly volunteer cooking a few meals and ensuring that you Mama Jen have a meal to eat. I am asking local mama’s to help you with the children for example someone letting your older children carpool sometimes with them to school. Putting together some play-dates for the children too. It truly gets lonely for all the children involved and so do the parents, Mama Jen and Papa Smith, you too also need some breaks with other adults. I really hope that this message reaches all these Super Helpers so your family can get a few extra hands a month. Any local nursing Mama’s around, please help Kallista get some life saving food, donate some breast-milk if you possibly can.
I hope we can raise our voices so loudly that we can raise more awareness for Kallista and her condition. Raise voices so she can get the full medical services she desperately needs for her survival.
Watch for Kallista’s updates and if you can possibly help in any way, you can connect with Mama Jen through their Facebook page. If you can offer any type of support for Baby Kallista, even if just an ounce of milk, a local or even virtual support group for children with her same medical condition, a fresh hot meal for mama, sharing her story or a fun play-date I want to Thank You for helping. Please use my sharing buttons to share Baby Kallista’s story in as many places as you possibly can.
[clicktotweet]We Are Holding Healing Hands Together To #prayforkallista[/clicktotweet]