Friday, April 4, 2014

These Days

The inactivity on the blog lately is not an indication of inactivity around here.  We have had a week out of school (Spring Break) and now a week back in school and life has just been busy with these boys and this little girl.  Thanks for all the care and concern about Grey and his kidney stones.  I think he is still hanging on to one of them but he is handling it all like a champ.

The time has come for the every 6 month doctor appointments with Sophie Kate.  We will have 6 appointments with various doctors and therapists over the next two weeks.  There is lots to go over since some of the appointments had to be rescheduled while SK was sick and have subsequently become way overdue.  We will be discussing the progression of her CP, specifically extremely tight shoulder, elbow and wrist joints as well as the beginnings of scoliosis I'm afraid.  We will talk seizures, meds, sleeping patterns, lungs, oxygenation and botox injections(for her not me) and that is just the doctor side of things.  We will then talk elbow splints, wrist splints and AFOs with the therapists.  I know that's not all that will be discussed but that's all I can come up with off the top of my head...makes me tired just thinking about all those appointments.

I am sad to share with y'all that Sophie Kate will not be going back to school this year.  We really hated to have to make this decision. I so wanted her to be able to go back and finish out this year in her classroom, she loves it so much...BUT as I mentioned here we are still dealing with too many kids being sent to school sick.  I am still having a hard time with this so I am going to just leave this post to do all the talking for me and believe me I am feeling every word of it these days.  My girl is missing out on all the benefits school has to offer her and it isn't right.  OK I am really going to have to stop myself, cause I could go on and on about this one.

Grey has had a hard time with his sister not coming back to school and I think that is why I am still having such a difficult time with it too.  "This is our last year together at the same school," he said to me through his tears.  He was expecting her to go back to school this past Monday and it has hit him hard that she is still not there.  He went on to say, "I never get to see her," to which I replied, "You do know that you live with her, right?"  He didn't appreciate that comment very much.

Sophie Kate still struggles some days and so do I.  The smallest things affect her in such a big way.  She used to be able to tolerate some time off her O2 and now she can't even go 30 minutes without it.  Her recovery time from sickness isn't as quick as it used to be.  I see her struggle every single day and it takes a toll on me.  Nothing comes easy to her except that beautiful smile of hers and I am thankful that she still shares that with us.

It's been particularly hard over the past few weeks even with Spring Break thrown in there I have been struggling with my thoughts and feelings.  Things are changing with our girl in so many ways and I long for easier, happier days.  I know that this summer will be different from last summer.  I want her included in everything our family does and that is becoming harder and harder and it hurts my heart.  God continues to show me in very real and tangible ways that He right beside us and continues to provide for our family.  I see it and I am thankful that I can still see it even through the hurt.  Our God is so good.

I have often wondered how my girl could affect the lives of children in faraway places.  She is not able to travel very long distances.  How could she ever touch the life of a special needs child in another country?  Well, I know now and I have the best story to share with y'all once I hear it firsthand myself and get permission to tell it.  Stay tuned it's going to be so good.

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