I promise i will get to the shark and the whale thing in a second.
In case you did not see my facebook status update this morning – Kendall is doing MUCH better this evening than last night. Her heartrate is HALF of what it was last nite. I have heard about one fourth of the coughing and gagging that was going on last nite. Her temp is holding steady and in general she is just much improved. In her own limited way, she is communicating to us that her tummy hurts, and you can see places throughout her tummy where things are obviously backed up. Not quite sure what this all means for our “onward and upward” plan for gut rehabilitation, but we are praying that whatever has ticked her system off so badly can reverse itself quickly. She was definitely feeling the effects of her very rough nite all day today, but in typical Kendall fashion, took the pain in stride, and even had a few great moments in speech therapy today. Autonomic dysfunction strikes again, but thankfully is not taking over!
I think we had a huge breakthrough with her connecting the dots of HOW to tell us that she is in pain so we can try to help her fix it. Typically she will just begin to withdraw from activity, will make less and less noise, and less and less movements and then she turns into rosemary’s baby with the banging of her head, hitting herself, hitting us, kicking us – just psycho. And i mean that in no other way than it is hard to describe the metamorphosis that occurs from sweet baby K4 to whatever the crazy pain turns her into. It is absolutely heartbreaking. And i know she pushes through so much every day. Anyways. i don’t like her being in pain and i like even less talking about her pain.
oh and the breakthrough in speech – her therapist was doing “role play” with, of all things, a shark and a whale. The shark had to tell his mommy (the whale) that his tummy hurt so he did not want a snack. and I swear to you i saw a synapse HAPPEN in kendall’s brain. like a serious lightbulb went off in her head. “I can tell my mom, and i don’t have to shovel food in my mouth, and i can get the medicine that helps me feel better…..WHY DID NO ONE INFORM ME OF THIS BEFORE?!?!?!?!?” So at bedtime tonite, when she was getting hooked up to all her tubies and wires, she did NOT want me anywhere near her tummy and said “tummy hurt. med-sin. me.” then a few seconds later “tell mommy.” yes yes yes!!! tell mommy! don’t kick/hit/go postal on mommy!
Thank you so much for all of you who prayed, who checked on us throughout the day, who email or send messages to say that you are thinking of and praying for us. I cannot tell you how very much those mean to me, to us. If i haven’t responded back to you yet – I just got distracted by my own “lack of sleep” headache and i do apologize. I will hopefully get to the last few that i may have missed soon!
In other news – it’s one week in to the 20 Minutes a Day challenge, and I have to say that I am doing pretty good, if i do say so myself! I am one blog post short – but it is in my drafts folder and awaiting pics (it will obviously be backdated!) And last nite was the only nite that i did not do my 20 minutes of walking – but i think under the circumstances it is understandable! (plus with ben out of town for work it is hard to get that 20 minutes where i can actually leave the house!) So i did a little extra today to make up for it. I am loving that so many of you are doing this challenge with me – so let me know how you are doing! Leave a comment on this post or email me if you prefer! And don’t worry – if you are missing a day here and there, or even a couple that’s fine! It’s just a challenge to see what we can do – not an all or nothing kind of thing!
ok – i have to go try to get a few hours ahead on all the missing sleep from last nite so that I’m not a complete zombie for a busy weekend ahead!
thank you again for stopping by!