We finally have sunshine! I was able to go for a jog today...the first time in a long time. I feel a ton better.
Poor Kamden's fever actually turned out to be strep A and influenza B. We all had the flu shot, but they have seen a lot of break through flu. His fever got really high yesterday (105.8) and I panicked. He's not the one that gets sick. Thankfully our nurse was here and she kept me calm and helped me get through it. Have I mentioned how much I love her? I try to respect her privacy, but I have to say that without her, my life would be so different. She has absolutely no idea how much my whole family loves her and appreciates her.
So our pediatrician decided it would be a good idea to start Kendall on Tamiflu too. So far so good. It was a bit of a feat though finding it. Of course, the one pharmacy that had it didn't file our insurance (if we were straight Medicaid they would have) so I had to pay it and pray I get reimbursed for it in the next 8 months. (it was over $300)
We took Kendall for her Endocrine labs and her Nephrology labs. There was a small malfunction with the tourniquet, and Kendall was left with blood everywhere and a very bruised up arm. I was going to post a picture, but it's not exactly something I want to remember.
Yesterday was definitely a day that I'd like to forget.
Please keep Kamden in your prayers as we get him well, and also pray Kendall doesn't get it. With all the travel Justin does, I don't know how I would handle both of them ill. I don't have enough hands and am sure Kendall would end up in the ER. Is February almost over? I swear, February and September are not good months for this family!
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)