Monday, February 7, 2011

Way behind…

…that is in updating the old blog.  A friend told me that she knows that I will update when we are in the hospital for obvious reasons, but once we are home she worries because she knows that things are constantly occurring in our home but I don’t  blog about them.   Sad but true, I have the time to blog when Lucy is in the hospital, when at home everything and then some needs my attention.  In an effort to cover some ground I am going to resort to a random list format post…I apologize in advance for the randomness of my thoughts.

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Praise the Super Bowl, ok not really, except that it was a wonderful distraction to all of the stress in our life this year.  Drew, and I suppose the entire state of Wisconsin, are walking around today feeling oh so happy about last nights victory over the Pittsburg Steelers.  Drew especially, since you know we live the great state of PA and…well…we have had to deal with Steelers, and lets not forget Eagles, fans razzing our team for quite some time.  Drew dressed our kids this morning in Packer apparel telling them to, “wear it with pride”. Umm… yes you read that correctly Drew dressed the kids, which by the way is not his thing, as he has a difficult time picking out clothes for himself that match.

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Jack and I had a rare opportunity to get out together on Saturday afternoon, just the two of us.  It wasn’t a planned event, just an impromptu outing, I had errands that I needed to run and he wanted to come along.   This was so unlike Jack as he hates to go shopping, and in all honesty I hate to bring him shopping.  Jack discovered that he likes the Christmas Tree Shop…really!  He told me that I should bring Megan and Sophie there sometime, because in his words, “they would go crazy with all of the stuff for not just Christmas there.”  I LOVE that he thought about his sisters on an afternoon that it was just us.  I had fun talking with him about some of the things on the mind of a ten year old boy.  On several occasions that evening, Jack  would say, “Whas up?”…me, “huh?”.  The first time he said it I tried not to laugh, the second time I said the same thing back to him to which he smiled at me and said,  “Mom is that disrespectful to say?”.  So grown up, yet still so young…be still my aching mommy heart.

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Megan is as darling as ever….um,yes I am totally biased, but really if you asked anyone they would probably say the same thing about our girl.  Megan has become Lucy’s favorite playmate as of late, because unlike Sophie, Megan is a little more accommodating to Lucy’s wants and desires (I am choosing my words carefully).  The girls spend hours, no joke, playing “hospital” with all of the excess, surplus, repurposed, copyus amount medical supplies we have around our home.  Often when I go to pick Lucy up I am not sure what tube is attached to her dolly and what is actually attached to her, it makes it all the more challenging to pick her up.  What can I say, play imitating real life. 

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Sophie is the same… inquisitive,independent yet needy, so sweet yet so stubborn,  little love bug.  She has been spending a lot of time mass producing  making Valentine cards for all those she knows and loves in her life, or maybe they are just for those she knows, we have a lot of cards.

Drew and I have some difficult medical decisions that need to be made for Lucy weighing heavy on our minds.  We had a challenging, albeit productive appointment with the motility specialist at CHOP, Dr. B, last week which prompted some communication between Dr. B and Dr. R.  The communication between the doctors was good, the conclusions were not.  I am not going to dive into the details about it just yet because I am in need of some more information before I write about it.  I just wanted to share with you that we are struggling with what to do, and the feelings that accompany such difficult decisions.

1 comment:

Kristina said...

Drew and Jack's faces give me such peace to know that you're family can find times of happiness during this difficult journey.
Our prayers are always with sweet Lucy and your whole family!

Way to go Packers!!!!!
Kristina and family