No parent ever wants to watch their child be handed a medical complexity card. We sure did not expext that. When our daughter Emma was born 13 years ago we never expected having to reach out even once for help, but honestly we have had to do it a few times. We are and always will be greatful to any support we can receive for our kids. Even if its a share, a comment or a prayer.
We have two 13 yr old children both with different needs. My husband has worked and I have been a stay at home mom until this year when I returned to the work force after 12 years home with them.
Our life has been periods of medical uncertainty off and on for a long time mainly due to lack of medical options and specialists in Rapid City. It leaves us needing to travel often out of our city for medical care.
One of the reasons being so many medical needs is that our daughter Emma was born with DYRK1A Syndrome. Which is a very rare genetic disorder that affects less than 1000 people in the US alone. Ontop of that while I was pregnant I contracted a virus that in typical adults and children presents as a cold however in unborn babies can cause life devistating side effects. CMV or Cytomegalovirus. However I transferred it to Emma in utero causing her to be born with Congenital CMV.
These two things have caused a slew of life long aliments and difficulties for her. Shes autistic, she has seizures, sleep apnea, asthma, a compromised immuned system, a learning disability and what we now know to be called Gastroparesis.
Sadly, almost two months ago despite all her daily regiments Emma had a flare that was triggered by a cold and slowed down her disgestive track despite all our best efforts to prevent one. That started a battle of constipation and abdominal pain. We were forced to watch her decline in health while trying to get her help locally.
We spent all of October missing various hours and days at work. While she was missing school in pain. Her health, her happiness and her mental well being was crumbling faster than we could take her in for help.
To say we exhausted all resouces in our area is underexplaining the amount of hours spent at her pcp, in urgent cares, the emergency room.. often and frequently begging everyone we could for help as she started running fevers, and having all over pai , a high white blood cell count, extreme pain. Things that would be devistating in an adult. Terrorizing our daughter, keeping her from school, social activities, church even.
Then came the pneumonia sneaking in on her body while it was down. Still we did not give up, we begged for help until we realized sadly.. she couldnt be helped in Rapid. We were left with no choice but to travel 339 miles away to Sioux Falls where she was admitted into the hospital for a three night four day of treatment.
We will forever be greatful to Sanford's for taking action and helping our daughter find some relief. However in the storm of her recovery, which can take months with how expanded her bowels ended up being.. we are left in a pickle jar of struggle.
Our lost days and wages have played havoc on is trying to catch up the bills. Our utilities are coming due, our car payment and worse off rent. Not to mention its cold up here we need to keep the heat on.
On top of that Emma has some supportive items she could benefit from to prevent as many future flares as we can. We need her to be on a water drip feeding tube for liquids, medicines and formula. We have discovered laying flat is causing her gerd to act up so we need a way to raise her up some. Her feeding pump is quiet and I am hard of hearing, so we have been sleeping in the living room. Havinga baby monitor in her room would benefit her, give her back a sense of normalcy. All teens should get to sleep in their own room. Theres also need to return to Sioux Falls for future appointment follow ups and until January we have exhausted all help from the local branch of the Childrens Miracle Network.
We know we have asked for prior help and we never wanted to make this something we needed again. Its humbling to realize your struggling, as a lot of us are in these dark days. We know its not something ask easily for. This is for the benefit of our family.
Thank you and god bless you and your own this holiday season.
"Ask, and it will be given to you: Seek, and you will find; Knock, and it will be opened to you." (Matthew 7:7; Luke 11:9)