February 12, 2020

The first time I was to lay eyes on Dakota the doctors told us not to be worried but he would have to have a cast on his foot. Being a first time mommy I was so scared I didn't know what was happening or happened or going to happen. Was it me? Was it the doctors? Is his foot broke? Then the words clubfoot came out. Yes you guys my 1st born was born with a clubfoot. We went every other week to St. Louis Missouri for months after his birth, having to change cast and get seen by the very best in clubfoot treatment. At 3 months they cut and casted for one last time before years to be spent using braces and having to get seen every 3 months. 2 years in, thinking treatment was almost over we went to doctors after doctors even er visits trying to figure out what was wrong with him. And finally after switching drs and getting sent to 2 different specialists we found out he has cystinosis. So now not only are we having braces on our feet but now they are talking about having to see kidney specialists and daily on the dot medication routines. They even sent us to Maryland to get seen at the NIH. We knew this day would come eventually since he was 2 and 1/2 but hearing the words transplant time and possible dialysis if we can not find a donor in time is the scariest most heart breaking thing a mother can hear. I beg all of you to please if you can not donate or simply do not wish to, the best thing you can do is share his story. Help us find a donor. This 9 year old boy has gone through more than any adult should ever or will ever go through. Share his story, invite people to his page! Let's show this loving kid the love and support he would give to a stranger himself. He deserves to feel better, he deserves happiness, kindness and LIFE!

Just thought I would let everybody in on his day to day medications to help understand what he goes through. Not only does his disease itself make him exhausted but with his kidney not functioning and all the side effects from all these meds make him drowsy as well and upsets his tummy almost every time he takes them.

8AM Meds. By Drop ~

1. Ketotifen 0.025% solution: 1 drop both eyes for allergies

~8AM G-Tube Meds./4oz applesauce mix~

1. Procysbi 25mg-1Cap

2. Procysbi 75mg-5Caps

3. Cyproheptadine 4mg- 1/2 tab

4. Potassium Chloride 10% 20meq/15ml- 40ml

~8AM Meds by Mouth~

1. Calcitriol 0.5mcg- 2Cap

2. Springvalley D3 5,000- 2Cap

3. Flintstones Complete Chew- 1 Tab

~8PM G-Tube Meds/4oz applesauce mix~

1. Procysbi 25mg- 1 Cap

2. Procysbi 75mg- 5 Caps

3. Cyproheptadine 4mg- 1/2 Tab

4. Potassium Chloride 10% 20meq/15ml- 40ml

5. Zoloft 25mg- 1 Tab

~5PM Meds by Mouth~

1. Montelukast 4mg Chew- 1 Tab

~5PM Meds by injection/drops~

1. Omnitrope 5.8mg- 1.2ml

2. Ketotifen 0.025%- each eye

~Meds every other hour~

1. Cystaran 0.44%- both eyes

~Meds and Formula at Bedtime~

1. Erythromycin ointment 3.5mg- both eyes

2. Suplena- Two 8fl oz for 8 hours

~Meds once weekly~

1. Procrit- 10units every Wednesday

I know I am probably missing some but that is most of them.