I only have a few minutes to write. We are moving in the morning, and I should be packing. We are still alive and still kicking. We have had several set backs the past few weeks but still feel like there are many good things in life. Here is a quick up-date.
Sadie's EBV (a form of mono) levels have "skyrocketed" according to her nurse. Her prograf levels, the medication she has to take twice a day for the rest of her life, are also bouncing around and the medical staff at Primaries isn't positive as to why she is having these problems. She has had to go to our normal physician twice to have her lymph glands felt for nodules. Since her immune system is weakened due to the medications, she and all transplant patients, are at risk for quickly developing nodules that can turn cancerous. A sign of this happening is having a sore throat. So far, she hasn't had to go back to Primaries. Instead of having her normal once a month blood test, she will have had at least four by the end of next week. There is also a shortage of the medication she needs to prevent the EBV infection from causing more problems. It took three days for our pharmacy and Primaries, working together, to find any. So frustrating!
On Tuesday, I took Trevin to the ENT doctor (ear nose and throat) with some concerns. He gave me a four step plan to try to find out why Trevin has a rash that we can't get rid of. 1.) Try cortisone cream for 4 days 2) Try a prescription after that 3) Come back in two weeks for allergy testing 4) Take Trevin to a dermatologist to see if the rash is NF-1 related due to increased skin sensitivity. Also, we were asked to keep a daily log of everything Trevin eats. We had seen our regular doctors office a month ago for the same problem and used a different prescription. I hope step 1 of this latest plan works!
Wednesday night I was setting dinner on the table when I got a phone call from the University of Utah. I thought it was probably a bill collector as I answered the phone. No, it was Dr. V. I thought, "Great, they made a mistake! Trevin doesn't have NF-1 after all. This will be wonderful." No, I should know that when a doctor calls, it's not to give good news. The results of Trevin's genetic testing came back. Besides being 1 in 3,000 children to get neurofibromatosis type one, Trevin is one of the five percent of these children who have gross gene deletions. This means that Trevin is missing about 15 genes. Doctors only know what one of these genes, the NF-1 gene, actually does. Trevin is now 1 in about 17,000 kids who have a similar medical condition. The doctor said it is one of the more "severe" forms of NF-1. I hate the word "severe" to pertain to any child-- especially one I gave birth too!
Here are some quick facts about what this may mean for Trevin as he grows up (maybe not, but this is what other persons with NF-1 and similar gene deletions face).
* An extremely hard time in school.
* Motor delays-- he has taken a few steps, will turn two next month, and we are hoping to have him walking by summer.
* Language delays
* Many tumors. When other kids get zits and pimples, kids with gross deletions begin to get tumors. Some will be visible. Most will be internal. The location of these tumors will determine the severity of Trevin's complications (in the eyes, brain, spinal cord or in his organs... lots of worry some places for them to form).
* Most of the time, these tumors are non cancerous turning the childhood and teenage years.
* Kids with gross gene deletions & NF-1 have a higher risk of developing cancer-- usually between the ages of 20-40.
Combing all of Trevin and Sadie's medical adventures, and life can become a bit overwhelming. We have moved so many times that moving doesn't really phase me much. It keeps us busy but it's all things medical that really get stressful for me.
Here are some great things that we have going for us. Sadie lost her first tooth last night. She smiles constantly and loves, loves, loves attention for her toothy grin. Trevin blew a kiss to his Daddy this morning. I have never seen him do that before. I am so grateful for each new thing Trevin does (except unpack the boxes-- but that's not really a new skill-- we are pros at repacking after he is done playing). It was tender to see him blow a kiss. Each time things get rough, we have some heaven sent blessings. Someone will call, stop by, send a kind note, bring us dinner or a treat, send help to get us moved, or on one special occasion, kidnap me for a night out. We are given much needed help and support without asking for anything. I am so grateful. I have had my prayers answered many times by the service other people give to us. Now, I've also been praying to get my house packed up in time. It's time for me to get busy so I can help Heavenly Father answer my own prayers. We have had so much support and love given to us-- I am constantly amazed. Thank-you to everyone who had ever helped us or prayed for our family.
By the random way, I am not proof reading this post. I don't have time. Please ignore any typos or incomplete sentences. If I read this again I will start to edit, revise and re-write. I won't finish. I'm going to pack, so please ignore anything that doesn't make sense. Gracious.