Caleigh and Holly came over this afternoon. They brought much needed good luck with them....cause we had a call from our Metabolic Geneticist while they were here. (I missed the call early in the day and it was the actual Dr. not an assistant! Usually that only means bad news.) Fortunately, we were informed that the Mitochondrial blood work they did all came back normal. She said she deals a lot with kids with Mitochondrial disease...and Kendall doesn't fit the mold. She also boldly said she knows better than the Neurologists and Endocrinologists. SO, praise God!!!
The past few days have been challenging for me. I guess mostly because Kendall's been in pretty sour moods between 3-5 every day. This also happens to be the most chaotic time of the day. She's been eating well, but of course, her blood sugars are all whacked out. So not much sleeping at night. Its hard on everyone.
We also found out 40 hours a week nursing has been approved and is ready to go. They will be sending our nurse out on Monday. Should be interesting. My understanding is that finding the right person will be a process. We'll see how it goes...
I just have to say that in this Special Needs world I have met some really amazing people. The therapists and case workers have become like family to me. Some of them just started reading my blog...but even if I didn't know that...I would still write the same thing! The ones here today in particular. Lindsey...who's been with us since day one in this journey...you have totally seen me at my worst and have always remained positive and encouraging! I am so blessed you came into our lives when you did. You are really good at what you do. And, Holly. Another mom who totally understands my vent sessions...and is filled with solutions (probably cause she's been there!) I'm so glad I stalked you at the Beeping Easter Egg Hunt! Mushy gushy really isn't my style, but please know your family means so much to mine.
Today was a good day. My cup is overflowing with love and friendship. :)
5 comments:
So glad that Kendall was spared having to deal with something else. Great news!
Yes, therapists can be wonderful can't they. :)
Glad things are better, YAY for good luck visitors!! The home nursing is a mixed bag, just have some boundaries set and I am sure Kendall will win her over in no time at all!!
Awe! Your too sweet. It's not even 7am yet...is it too early to be teary?
Thanks for listening to me too. I'm not always sunshine and bubblegum but I can get there after a good talk :-)
Of course we love your family too and I will never forget you stalking us at the beeping Easter egg hunt!
Mushy..Gushy..Mushy, oh well.
I must have that picture for Caleigh's room. Have a nice relaxing day and I'm sure I will call you with news from today!
First I am so glad that you met Holly, and you guys have become so close. Second, I am honored to know you, and I feel thankful all the time. You have helped us SO much, and Holly has too. You are both great ladies.
I am so glad to hear the news that Kendall had a clear test!! WHEW. I love the pic of the girls, so cute!
WOO-HOO, I'm doin' a happy dance!!
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