So today our hearts a very heavy and sad. The news about Hope, even thought we talked about Hope and her Family everyday and knew it was going to happen was still a shock. Connor and I talked at length during lunch and as always he surprised me in the way he was looking at all of this. He said 'Mommy, it is not fair that God calls children home and that children get this sick' and then he said 'I wish no one would ever die so no one has to feel this sad'
My husband posted a reply on FB that just puts it all in one sentence for us:
One of the doctors here, Dr. Wilson, has been very kind to Connor and us and she thinks he might just need to go home. At least she feels he would benefit from getting outside and even thought a trip out shopping to a Target store might be beneficial - now 'Target'? what is that??? :)
Another thought of course are that the side effects of the Steroids are causing him being depressed. As the doctor mentioned he is on very high doses for his age and size and she heard that Dr. Soep had talked to Dr. Pachman and that we might be going back to twice a week instead of three times a week of the 540 mg of Solumedrol.
Well just as I was typing this the call came in from one of our doctors and it was decided between Dr. Pachman and Dr. Soep that Connor will go back to twice a week Pulses of the Solumedrol, Tuesdays and Fridays. In addition Connor is now scheduled for a Bone density test tomorrow morning, plus they will check his Vitamin D levels as well. We might also start IVIG this Friday as well!
Our Nurse, Chinonye, Connor's all time favorite here at TCH also paged Javier, Connor's Psychiatrist so he could stop by and talk to him and he did but we did not get any farther then Connor answering some question about Star Wars before he said he was to tired for talking. So Javier will be back tomorrow.
At home in LG it was a busy day again for Ron as he had to run errands today and get a new Windshield for the Excursion. My Mom sounded good as well when I called and my Dad was napping. Sounds like they had some snow flakes with more in the forecast.
Alexander is still battling his cold but seems to be coughing less. The biggest heartache right now is not being able to have us all together. Talking on the phone and skype is nice but just not the same as being able to see them and hug them.
Tomorrow Ron will come here to Denver but we won't trade out just yet but instead we will both spend the night with Connor before I head home Friday late morning.
So when you are done reading this get up and hug your family and tell them how much you appreciate and love them.
"I'll lend you for a little while,
a child of mine" God said,
"for you to love the while she lives,
and mourn for when she's dead.
It may be two or three short years,
or twenty-two or three,
but will you, till I call her back,
take care of her for me?
She'll bring her charms to gladden you,
and should her stay be brief,
you'll have her lovely memories
as solace for your grief.
I cannot promise she will stay,
since all from earth return,
but there are lessons taught down there
I want this child to learn.
I've looked the wide world over
in my search for teacher's true,
and from the throngs that crowd life's lanes,
I have selected you.
Now will you give her all your love?
Nor think the labor vain?
Nor hate me when I come to call,
to take her back again?"
God fancied he heard the parent's say,
"Dear Lord, thy will be done.
For all the joy the child shall bring,
the risk of grief I'll run.
I'll shelter her with tenderness,
I'll love her while I may,
and for the happiness I've known
forever grateful I'll stay.
But should the angels call for her,
much sooner than I planned,
I'll brave the bitter grief that comes,
and try to understand."
I can only wish I would understand if it happened to us...
Hugs,
R A C A
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