It is amazing how fast time flies. In July it will be 4 years since Myla was diagnosed with Nephrotic Syndrome (kidney disease). What an emotional rollercoaster these four years have brought us!
About two months ago, Myla started getting really sick; nausea, dizziness, leg pain, fatigue, shortness of breath, and horrible diarrhea just to name a few. On one of Myla’s monthly blood draws we found out her body was overdosing from one of her meds. They took her off of it for 5 days and then put her back on. During those 5 days, she seemed to be doing better but as soon as we put her back on she started getting worse again. I took her off of it again for a week and then the doctor said to give it another try. He felt her symptoms were not related. I’m not sure if I believed him but I followed his guidance anyway. Myla is so sick right now that she cannot play with her friends. Most days, home school or anything involving moving her body/hands she cannot do. She just lays there. I wish I could describe the feeling of being a mommy of a sick child. My heart is breaking for her and there is NOTHING I can do to help.
On Wednesday of this week they took 4 or 5 vials of blood and then yesterday they took 7 more. Myla refused to go to the doctor yesterday, so I promised her that she would not get any shots or blood drawn. Normally she would get her blood drawn the day before a doctor’s appointment, and then at the appointment the discussion would include her blood work. Well yesterday was not that way. Because of how sick she is he wanted to test for more things. Myla had to get 7 vials of blood taken and then she passed out from it. I felt like such a horrible mom. She was so mad at me for “lying” to her. Lesson learned!!
I know moving to Utah was and is where we need to be but at the same time it has been very lonely. We had such an amazing ward back home that we considered family. We really do not have much of a support system here and that has made it really hard for me to handle all that life throws our way. Thank you for all the love and support our friends and family have shown us. We sure love you guys!
|Myla discovered Shel Silverstein and in 2 days just about read the whole book. |
One of my childhood favorites and this book came from when Kirk was a little boy.