We are settling into a good routine. Alex and I are doing school for about two hours each morning. He has therapy twice a week and I am back going to the gym. So it is nice to be on a schedule and feel somewhat normal.

I th​ought Monday was going to be a hard day for me. It would have been Buggy's first day of school. One of those milestones that every mother remembers. So I was shocked to wake up Monday morning and be FINE! I met "my girls" (playgroup) for breakfast after they had dropped the kids off and we had a great time. Buggy helped by telling me he was glad he was homeschooli​ng because otherwise "he would miss me so much he would cry all day". My sweet boy always knows the right things to say!

As for medically, we are trudging along. Things are pretty stable. We will keep doing what we are doing and see if Alex's body can adjust to less fluids and space out his need for them. he has been really pale all week but is acting okay. My only other concern is that he is starting to bruise again. We see hematology towards the end of September so we'll see what they say.

Thanks for being a constant blessing in our lives.
Ali

It has been a nice few days!

Yester​day we went to the mall to get Alex a few things and to let me spend some of my Birthday money. It was good family time. Last night a friend called and asked me to meet her for dinner. Bruce agreed to keep Alex so I had a girls night out which is always a special treat.

This morning was special to me. For the first time in a long time we headed back to church! Church has always been special to me and something that has been a part of my being since I was a little girl. Alex was in Sunday School the whole year he was three. Then last year because of being in the hospital all year we weren't able to attend. Today was the kickoff for this year. (We rarely go in the summer because the teachers jump around to much for my comfort level) Alex had a ball! he is calleing it "playschool" because its so much fun. I am so blessed to have a group of ladies that have really taken to looking after Alex. When i went to pick him up, his teacher let me know that Alex had spent a little time with another class while his class went outside. The Sunday school director knows Alex well enough to know that he would struggle in the heat without his cooling vest and chose to keep him inside. It is that kind of caring that gives me the peace of mind to leave him. So thank you Keller United Methodist Church!

On the medical front... While in theory our plan sounded great. In practice it is not working as we had hoped. I got a call on Friday giving me specific instruction​s. Basically if Alex's pee for a 24 hour period is less then 10 oz or 300 cc's, we are to replace. While the hope was that this would allow Alex to be deaccessed for several days at a time. We are basically having to replace every other day. So we have not been able to deaccess at all. One, I am not willing to stick him with a needle every other day and two it would increase not decrease his infection risk if I were to access him that many times a week. So I will touch base with everyone tomorrow and see if anyone has any other thoughts!

Al​i

I had a really heartwarmin​g moment this morning!!!

A​s a Mom of a child with major medical needs, I am so much more then Mom. I have to be Doctor, Nurse and Teacher along with a hundred other things. Because of this sometimes I have to be the one who inflicts pain on Alex instead of comforting him. For example I have to give Alex a shot every week and access his port (stick him with a needle in his chest) at least once a week. There is always the fear that Alex was start to resent me of be mad.

So anyway, Alex is very warm and loving. He is always giving me lots of hugs and kisses. Well this morning I walked into his room and he clung on my neck and said, "Mommy, I love you so much you can't even imagin​e it".

He is so sweet!
Ali