When my sister and I were kids, my dad always used to say "sleep fast" when we'd go to sleep late at night and have to wake up early in the morning. Unfortunately, I am now 30 and still don't know how to do that! Sleep is not easy to come by these days. Kendall has started to have seizures in her sleep. I thought this was uncommon for Infantile Spasms, but like everything else with Kendall, unlikely things seem to always happen!
I picked up copies of Kendall's past 5 EEG's. The last one shows that the "study does not rise to the level of a modified hypsarrhythmia, but is consistent with an epileptic encephalopathy." If anybody knows what that means, please let me know. Also, the last video EEG (done before the one I just asked about) states that she had "multiple tonic spasms, hemihypsarrhythmia, and diffuse slowing and disorganized." So, does that mean she has IS on only one side? I don't understand!
Her seizures are disturbingly increasing in frequency and force. This morning at PT she had several, but her head control was great! We have officially added OT to our list of services now too. The new OT gave us some great things to do with Kendall to promote more reaching and grabbing. It's just really frustrating to me because her seizures rudely interrupt pretty much everything we do in the morning. I'm really ready to move on to the next medication. Our hematologist appt. is on Thursday, so hopefully we will make new decisions soon after.
Please continue to keep us in your prayers this week.
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 :)