My Family

My Family

Wednesday, November 25, 2015

Finding the Thanks

It's easy to be thankful when things go well.  When Festus pulls all A's, is in honors, and is in the top of everything it's great.  When Gloria makes the cheer team, majors in law and is in line for the Nobel Peace Prize it's even better.

When you are a mom to two kids with dynamic needs it can be harder.  Thankfulness can be elusive.

We made it back from Dr. Roman's visit a few weeks ago.  I had hoped for some amazing and dynamic breakthrough with Cary Lynn's CVI.  What we got was just more questions and confusion on the topic of her vision.

Cary Lynn has made some modest progress.  But not what we had hoped for.  It turns out she may have another visual diagnosis in addition to CVI.  Optic nerve hypoplasia occurs when the optic nerve is underdeveloped.  The visual loss can range from mild to severe.  So even if we correct the CVI Cary Lynn may never have a great amount of functional vision.

I held it together in front of the kids but I got back to the hotel and cried.  I worked so hard to help her vision and it seems like what I did may or may not have mattered.

We also had a visit with her GI dr and found out in an x-ray that she has a subluxation in her hip.  I was hoping for great things from the GI doctor and had high expectations.  But finding a gi doctor who is able to work with medically complex kids out here is like finding a needle in a haystack.  He sat and watched my child scream and bite herself in pain until she bled in the office and all he could say is she does not weigh enough.   Seriously?  I wouldn't take my pet rock back to him at this point!!
Then there is my son.  I found out that he needs speech therapy.  I know those of you who know my very verbal child find this incredibly difficult to comprehend.  I know I did.  His OT started noticing things and referred him.  It turns out he has processing and delay issues.  Speech feels that she can help him with this.  Marvin was not pleased that he needed more help.

He also gets another session of OT in the evenings.  This is a group session with other kids.  He's a little more excited about this one but for me it's just another therapeutic activity that I wish he didn't need.

As if my life isn't exciting and glamorous enough right now Marvin managed to get bronchitis.  I took him in today.  Yay, the party never stops for us.

Soooooo, since we have had so much happen to us all at once, which is kind of how it rolls around here, it can be hard to find thanks.

Yet despite it all, I am thankful.  Today my phone has rang all day.  I've had lots of people check in and offer support. I have an amazing network of friends.  I've also got new ideas to help Cary Lynn deal with her ever increasing pain levels.  I have a wonderful palliative care team who's sole purpose is helping our family find a great plan for Cary Lynn.    

I'm also thankful that we got to the Dr. today.  Marvin is starting some meds and hopefully he will get some much needed rest.  I'm also thankful that I was smart enough to purchase things for our own Thanksgiving meal since my children religiously seem to enjoy getting ill over the holidays.  Due to Marvin and my food allergies I decided it would be smart to make a meal we could eat and maybe puree some for Cary Lynn.  I'm thankful we will have a nice meal to sit down to.

Marvin is also making progress homeschooling.  He has gone from a first grade level to a second grade level.  For us that is a big deal.  He still struggles but he is trying so hard and now that he doesn't feel stressed or pressured his learning is starting to take off.  I'm thankful that he feels safe and that learning has become enjoyable once again.
Most of all I'm thankful for these two.  These kids are amazing.  They have lived through so much and yet find reasons to smile every single day.  They are brave, strong, and proof that you can overcome just about anything that life throws your way.  And for that I am thankful. 

1 comment:

  1. Hi Amy, I found your website today through your post on Hopeful Parents. As I was reading your posts, I noticed in this one you mentioned CVI - which my daughter also has. It is not something that I notice mentioned very often.

    As I read this post, I felt the urge to encourage you to try not to be too discouraged by your report on optic nerve hypoplasia. My daughter was born with a congenital birth defect in which part of her brain is missing, and also has a diagnosis of optic nerve hypoplasia (and hydrocephalus and developmental disability). At 6 months she could see basically nothing. Through many years of early intervention and vision services at school, etc., her vision inexplicably continued to improve and she can see more than we would have ever anticipated. She is now 27 years old.

    In her first year of life, the difference was having a shunt put in to reduce the excess (tho minimal) pressure. After that initial intervention, I believe the rest of the improvement that occurred over the years was from maturation, and part from accommodation.

    Best Wishes!