Tuesday, July 8, 2008

A Day of Ups and Downs

Today was a day that I hadn't really thought about as it approached - more medical appointments.  Surprisingly, ALL of our therapy appointments (4) this week have been cancelled.  It is probably a good thing since we have 3 eye appointments and 5 dental appointments.  The therapies would have been M and W and the medical appointments on T and Th - sound like a fun week for anyone?  LOL

Today was eye appointment day for Christopher, Isaiah and Eliana.  Christopher has been seen by this doctor since he was 4.  He had amblyopia and strabismus.  He needed patching, but no surgery.  At this point, it's all easy.  He wears contacts, takes care of everything himself and only has to be seen once per year.

Isaiah is young, so he is seen more often.  I didn't realize (until I started taking my children to be seen) that children's eyes are growing until they are about 8 or 9 years of age.  During these years, you can make changes to the eyes to improve vision - not just improving it with glasses, but actually improving the eye.  I'm a strong proponent of early eye screening for children for this reason. 

Well, today was a day for getting drops - for ALL three.  *sigh*  This is not a fun thing in case you haven't experienced it.  I'll just say that I had to physically hold and restrain my two youngest while they cried and drops were put in.  :-( 

Isaiah's eyes are improving!  He didn't like the way the new lens looked though, so for the time being the dr is leaving his prescription as is.  That's fine with me.  It won't harm him in any way.  He loves his glasses.

Eliana was the last to be seen.  I've been praying over her eyes for so long.  Even before she was born, I was praying for her eyes.  For those that know us in real life - or have seen pictures - you know that ALL 5 of our children have had vision problems.  Ironically, neither Roger or I do.  The boys have similar problems.  Rebecca's was mild and she wore glasses for a few years.  She doesn't need them now.  I have been hoping and praying that whatever the boys have was somehow tagged onto the boy gene and that Eliana would be more like Rebecca.  I know though that children with Down syndrome have a higher incidence of vision problems.

When I was talking with her doctor, I told her that I just wanted to hear that Eliana doesn't need glasses.  At her last appointment 6 months ago, she told me that Eliana has an astigmatism - not bad though.  Well, it's gotten worse.  This affects the shape of the eye - and obviously her vision.  I'm tearing up even as I type this - Eliana is going to need glasses.  I know that this isn't the worst thing in the world - far from it.  I've had this reaction with all six of my children.  I just didn't want any of them to have this problem.  I am very thankful that they each have the blessing of corrected vision with glasses though!!!

I've seen with a couple of the boys that some of the problems can't be fixed.  They get much, much better, but still not 20/20.  I know the difficulties of having glasses.  (I can't even tell you how many repairs we have had over the years!)  I think (and hope I'm wrong) that it will be even more of a challenge for Eliana to learn to wear them.  For that reason, we've decided to wait a little longer before fitting her. 

Additionally, her doctor told me that she is seeing some abnormalities in her optic nerve.  She thinks that she will be able to see "adequately" though and that it shouldn't be a problem.  Some things will just remain unknown for now.  The word "abnormality" just isn't a fun word to hear, kwim?

My precious Eliana has faced so many obstacles in her short little life.  As a mom, I just want to take them away - all of them or even any of them.  I had so hoped that she would not have to deal with this one.  Why does this make me cry?  (I cry far to easily these days - even at sappy movies!)  I just want to have her sweet little face uncovered.  I don't want to have to deal with the yanking off and trying to keep them on.  Selfish or lazy or proud - I'm not sure.  I just didn't want this for her.

Yet, even with the obstacles, Eliana has something that most of us long for - a joy that is so deep and not dampened by the small things (well, most of the time!).  She wakes up happy.  She laughs.  She puts up with so much - whether its rough play of her loving brothers or a variety of medical interventions.  She is such a strong and amazing little girl.

Aside from this difficulty - we had something exciting to celebrate with Eliana today.  I debated putting this in the same post as it really needs its own headline.  LOL

Eliana took 4 steps today!!!

  She did this more than once!  This is a huge milestone for her!  Children with Down syndrome have low muscle tone and hyperflexibility which both make some developmental steps harder to accomplish.  Eliana has been standing on her own for quite awhile.  She stands with her feet wide apart though.  It makes for a stable base, but not one from which she can step!  We have a contraption (I'll try to take a pic later this week) to try to help her with this muscle tone that she has worn once before we went on vacation.  We haven't tried it again this week, but it looks like she is making improvements on her own!  Way to go sweet girl!!!

I know that it will still be awhile before she is steady and really walking, but this is a start.  One of the things that is really exciting about this too is walking by 18 months is one the developmental chart for typical children!  It amazes me when she reaches any of these milestones within the normal timeframe as her cardiac condition really hindered her for quite awhile.  She is a strong and amazing little girl.

Rebecca tried to capture some steps on video - and we'll try again tomorrow.  She walks when she wants to and not necessarily when the camera is pointed at her. 

Today has been a day of ups and downs.  Sometimes I wonder when I'm sad if I'm just not dealing with things in a "mature or spiritual" manner.  I struggle.  I guess we all do.  I'm no spiritual giant - not by a long shot.  I am trying to walk in the path God has before me - failing and struggling each day.  I have so much to learn.  I have so much to be thankful for - even in the midst of trials and struggles, I know that I am blessed.

I am reminded often to count my blessings.

*A God who loves me beyond all that I can even imagine.

*An incredible family - both my husband and children and my extended family as well

*Good health - most of what we are dealing with now is pretty minor compared to last years plate. 

*So many wonderful small things throughout my day.  Today I held sweet young hands and received many hugs and kisses.  I heard the laughter of children and enjoyed the joy of playing together.  I was blessed by acts of kindness and words of love.  Too many things to list. 

Thank you for your prayers - and also for sharing our joys.