Photo Dump

Mother's Day Bedtime
I just want to say thank you all again for the kind words of support and encouragement.  I feel so very blessed to have so many friends!  And for those of you who like to pray for specific needs, I would love to ask you to pray for Lucy's appetite.  She desperately wants to get rid of her feeding tube.  We ALL do.  So I am praying that God will give her a wonderful appetite in the coming days, weeks and months.  Its not likely that the tube will come out before the end of summer but we would love to see it come out before school starts in August.

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Every now and then I just need to do a photo dump.  Tonight seems to be as good a night as any.  Many of these are from my phone, so the quality is not so great.  However, all these pictures represent a sweet memory that I want to have forever.

Jack simply adores his big sister.  He calls her "Yah Yah."  

I credit all the tutoring she and Mrs. Cissy have been doing. 

Our family is enjoying the time we have with my grandfather.  My girls just love him so much.  This particular night they took turns snuggling with him in his recliner.  

Lucy the safari guide.

Hogan sent me this picture last Friday.  I had taken the girls to the zoo for a school field trip and apparently Hogan and Jack had played very hard all morning long!

Ella before school one day last week.  She is growing up right in front of my eyes.  I am so proud of her.  

I love this picture.  

I have a whole post I want to do of Jack and this face.  Those eyes.  Wow!  He loves to pick up my phone or camera and say "chee."  This is the exact same picture I get every time.  He has the pose down to an art.
Days are hard here at our house.  Nights are sometimes harder.  There are a lot of physical demands placed on all of us.  Lucy has not made as much progress as anyone had hoped or expected physically so we are facing some huge hurdles there.  Insurance will only cover 20 sessions a year and we are on #16.  I am so very grateful to have good insurance, so this is not a cry of ungratefulness.  It is, however, a scream of frustration.  I don't understand how someone in some corporate office can dictate that my child only needs 20 sessions of PT a year.  The sweet angel can hardly walk from one room to the other.  She sure can't climb stairs on her own, get fully dressed alone or even put her shoes on.  I don't get it!  A PT session without insurance will cost us $400 an hour.  Clearly, that's not an option.

We are going to try to work with a couple of friends over the summer in the pool a few times a week.  If this works out it will buy us time until school starts back up in the fall and we can utilize the public school's resources.  I am worried about Lucy's body's ability to handle the chill of the water.  She has a very hard time controlling her body temperature due to the extreme doses of chemo that she received.  I have read about children swimming in wet suits to help with temperature control.  If anyone has had any experience with this I would love to know.  Thanks!


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