Yesterday, Kendall's examination under anesthesia went well. They were able to avoid using a breathing tube (thank you Tera!) so she didn't need a steroid, and she didn't have to stay for 24 hours of observation!
Her prescription changed a bit, and they got a good read on her pressures. Unfortunately, they were extremely high. Her right eye was 39 and her left eye was 28. Normal ranges are between 18-22. Kendall has thick corneas, so that may be part of the problem. The other obvious thing associated with high pressures when a child has had cataracts removed is Glaucoma. Our Pediatric Ophthalmologist is discussing it with a Glaucoma Specialist he works with to form a plan. Kendall will more than likely start eye drops. If that doesn't work, we face the possibility of shunt surgery. Which sucks. Her eyes are growing though, so that's a good thing. Her right eye is ready for an IOL, but her left eye still needs to grow a bit.
She came home, had physical therapy, then slept for 4 hours. She also enjoyed a swim with Nonna for the first time in a few days too. She slept well last night and awoke this morning without any hives. Thank goodness. I just laid in bed with her for about an hour this morning soaking in her sweetness when she's not sick. It's good to have my girl back.
Thanks for all your thoughts and prayers. She's definitely on the road to recovery, just in time to go on vacation and start school.
This past week was yet another reminder to take it one day at a time. A friend shared this quote on Facebook that another friend on the CP board shared. So.Very.True.
"For all we have been through, there is so little I know for certain except for maybe this: Motherhood is about raising--and celebrating- the child you have, not the child you thought you would have. It's about understanding that she is exactly the person she is supposed to be. And that, if you're lucky, she just might be the teacher who turns you into the person you are supposed to be." -author unknown
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 :)