"XMO'S"

Dave arrived late this afternoon around 4pm. Boy, does he take my breath away! Even after 16 years I still get silly when he walks into a room. Anyway, the most precious thing I saw today was watching our sweet Ashley lean in to give her daddy "XMO" kisses (Eskimo. When Allison Brooke was a toddler she would beg her daddy for "XMO's over and over again. The name just kind of stuck with us). He could immediately tell she was not herself and the blank stare she gives us is more than painful, but once he asked she remembered and willingly rubbed her tiny nose against his. It brought tears to his eyes and mine too. It was truly precious to watch her "kiss" her daddy over and over again.

We haven't gotten the final "ok" from either the insurance or the receiving hospital. At 5:30 this afternoon the word was that the insurance company's doctor would be in at 7am Monday morning and review the information and make a decision about whether or not they would approve the flight. We have never had any trouble getting the med flight before so I'm not sure if we will this time or not, but hopefully not. The intensivist on service today from Shreveport had not yet returned the call from our transplant coordinator as of this time either. Hopefully they will have a bed available.

As of today, Ashley Kate looks pretty good. Her output slowed back down and she has only required very minimal replacement fluids(maybe 25ccs all day). She is resting well tonight as is her daddy over there on the rug. Tomorrow we will increase her feedings once again and decrease her TPN dependence. She has a ways to go before getting off of the TPN, but she has managed to no longer require lipid maintenance. For this I am thankful. She had a good evening as she sat and played with a new box of toys that arrived for her today(thank you Liz). She ate mashed potatoes for dinner and a little bit of tuna salad. The combination makes me want to hurl, but its her new thing this week and she won't touch anything else. I'm just thankful she is still eating a few bites by mouth. Her calorie count has a very long way to go before she reaches her prior intake of 500 a day, but as least she is interested.

My heart is not quite as heavy when Dave is with us. Something about his presence just seems to lighten my burdens. Allison had lots of plans this evening and Blake had a youth function to attend. Tomorrow he travels to Lufkin to play baseball and is so excited because he will be calling all of his own pitches for the first time. I can't wait to hear all about it. Allison is scheduled to play her last soccer game of the season then she will have a few months off between seasons. She has chosen not to play basketball this year(you might as well have thrown a dagger into this old coaches heart over that one) and will only be competing in her Tae Kwon Do for the winter. Blake is playing basketball for the CHS Sentinels and will finish his baseball season next weekend in McKinney. They are both praying hard for this transfer to take place.

Well, its time to get a set of vitals on the pickle for the midnight hour and then we will leave her alone until 5:30 rolls around. I for one will be thrilled when we eventually make it home and are allowed to sleep more than those few hours a night. I'm sure she won't mind not being woke up that early to take blood either. We are looking forward to our meeting tomorrow and learning more about the long term plan for Ashely's recovery. Thank you for praying for us tonight. You are such a blessing. Goodnight. Trish