Feb 11, Day 237, Monday, Time marches on

The usual Monday start for Miss Lindsey Lou. The dressing change was a bit worse than last time and definitely had a smelly odor to it. You could tell it really hurt when they cleaned / scrubbed around the sites. After the dressing change was the blood draw. she is pretty tough for that one. Her INR (blood thinning level) was high at 4.4.  They want it between 2.5 and 3.5. The concern here is bleeding. With the blood being extra 'thin' it did dissolve a small clot they had been watching, so that is good.  ( We haven't told you about the clot because it wasn't alarming and most small clots come and go.) She has also been eating a little better and has gained some height lately.  I think she is up to 27.4 kilo, or about 60 lbs. So starting tonight they cut her feeds from 10 hours to 8 hours. They will see how she does with that. All this is just maintenance, keeping her has healthy as they can for as long as they can.

Tax season is in full swing. It is working okay to work remotely, but I can see I need to go home for more face to face and office work. I am still heading home in a week from today for 2 weeks. Lindsey's grandma's are both excited to come and spend some time.

This afternoon, Megan had her first Jordan Middle School basketball game. Her nerves were pretty high and she missed a lot of easy shots. Once she gets the jitters out she will be just fine. There are some really good girls on the team and she will be able to learn a lot. 

After the game, Stacy came back to the hospital and I took the gang to Pinewood gym for the 'Lightning Bonaaza'. A party for the end of the season. All 5 Lightning teams from all ages were there.  They had games, pizza and awards. All the kids had a good time.  The coaches were asking / hoping our kids could be on the team next year. If our kids are playing, I sure hope it is under different circumstances.  But what if we are still waiting.... Even though we are into a routine and making it work, it is still hard and a very delicate balance of raising kids in and out of the hospital. Lindsey gets so lonely without her brothers and sisters, but yet they need to have the experiences and growth. I still don't know how she hasn't gone completely crazy. Time marches on....

 The Lightning team.  I will come back with Sierra and have her tell me their names.

There is Mia, Allie, PK, Nori, Ruthy, Lindsay, and some others.

 Lindsey priming her feeding tube pump.

 Sunday morning walk to the LPCH Atrium.

 Miss sassy, who is getting to big for her dress.

 And don't forget the cannula sites. ugh