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Cupcakes and glasses and tubes, oh my! September 28, 2012

Filed under: Uncategorized — ryangrace11q @ 11:50 pm

Since our last update, poor little Ryan has been suffering unmercifully with chronic ear infections.  Just when we thought she was feeling better after a round of antibiotics, she would puke and get yet another fever and we’d be back at the doctor’s office.  Even after a shot of drugs in her little, skinny thigh, her ears were a complete mess.  Our pediatrician was just beside herself about it.  Luckily, tubes were on their way.  But in the meantime….

Someone turned ONE!!!!!  I can’t believe it.  It has been quite a year to say the least.  After all the grieving and heartache, we are finally at a good place.  I am going to be completely transparent here, so you may not understand this or even accept this, but I can finally say that I’m at a place where I’m not wishing I could turn back the hands of time.  When we first got Ryan’s diagnosis (and I’m talking about the brain cyst in utero) one of the first things that I said to my mom was that I didn’t want a special needs kid.  She tried to reassure me that everything was going to be fine but it was also okay if it happened.  Special needs kids are just that – special.  She told me that special needs kids bring families closer together.  I did NOT want to hear that… little did I know what was to come.  And little did I know that when she arrived and we knew she was going to be special needs that I would be so depressed that I couldn’t get off the couch, or that I would wake up in the morning and cry because it wasn’t just a dream, or that I would actually bargain with God that I would take breast cancer over Ryan when I found a lump in my breast.  But little did I know that I would become the closest that I’ve ever been with my mom, who took care of all of us at our darkest moments.  Or rejoice in my special baby’s smallest accomplishments.  Or become a tiger mom.  Or fall in love over and over again with this little miracle that has changed me forever.  So for those of you that know what I am talking about, I have reached “the moment”.  I don’t regret, I don’t look back in time and second guess my actions, I don’t bargain horrible realities for wonderful fantasies, and I don’t wonder “what if” and say “life would be so much easier”.  I just live.  I recently read a quote that said something about “living with depression means you are living in the past, living with anxiety means you are living in the future, but being content means that you are living in the present”.  I feel like I’m living in the present and liking it.  Now, don’t get me wrong.  I have my days that suck.  But I have my days that rock!  Family, friends, medicine, and beer have helped!  So overall, I’m doing okay.

But enough about me.  Let’s talk Ryan!  The Rooster had a birthday!  Poor baby was so sick that we had to cancel the big family get together.  Our ped pretty much told us that we need to keep her away from any potential sickness or virus before the tubes.  In the end we just had immediate family over.  We all ate, drank, and were merry while the little girl had a fever and just hung out.  Through it all she smiled – as she always does.  She opened presents (AKA Charlie opened her presents), and wore a tiara, and ate a cupcake!  She was the sweetest little birthday girl there ever was!  It was a really great birthday even though she wasn’t feeling too hot.

So happy to open presents!

Happy birthday to Ryan!

Moms and baby

Of course she had a zebra on her cupcake!

Two days after her birthday we went to a NEW ophthalmologist.  Dr. S. was everything that Dr. W. was not.  She actually spent time with us and explained everything she was seeing with Ryan.  She talked to us about Ryan’s optic nerves, her visual behavior, her MRI results, her near-sightedness, and her possible need for glasses.  She was so thorough that she called our ped about her concern with Ryan’s MRI and her pituitary gland and possible growth issues.  Because of that we will be seeing an Endocrinologist soon.  Ryan’s visual behavior and prescription has improved so much that the new doctor said that if she didn’t know about Ryan’s history, she would have never known she had delayed vision.  We go back in two months.  If Ryan’s prescription doesn’t improve again, then she will definitely get glasses.  We had such a good experience with Dr. S. that I’m kicking myself for not following my gut and going to her sooner.  Live and learn.

Finally, Ryan got tubes in her ears.  She did AWESOME!!!!  And of course, so did Cincinnati Children’s Hospital.  This procedure was so typical and routine that I really don’t know what to say!  Even when she was put under anesthesia, she did it with such ease that we weren’t scared and didn’t cry!  After 10 minutes the doctor came in and said that there was no acute infection, just some clear fluid, and that she did great!  After coming to, she did cry a little bit.  Apparently that is pretty typical, but once she  was in her car seat and on the way home she was good to go!  She’ll go back to daycare on Monday.

And oh yeah, girlfriend is totally sitting up!!!!  I don’t have any pictures that aren’t on my old phone so we will take some with an actual camera and get them posted soon!!

Because of our wonderful care from Cincinnati Children’s Hospital, we will be participating in their annual walk.  Please consider donating to “Rooster’s Boosters” and help us not only meet our goal to earn money for this wonderful hospital, but exceed it!  Please visit http://giving.cincinnatichildrens.org/netcommunity/page.aspx?pid=1165&tab=0&frtid=15119 and donate today!

 

3 Responses to “Cupcakes and glasses and tubes, oh my!”

  1. Maryellen Says:

    Wow – this one made my eyes well up with tears!! I love you telling it like it is, Liz – with the ups and downs and those “moments” that you just wish you could capture forever. Well, actually, you do capture those moments forever in your heart and on that gorgeous smile of that little girl! Happy Birthday to Ryan!! You gals are all amazing and I’m so happy to hear about the milestones she is gaining day to day! Keep us posted!! Much love!!
    Maryellen

  2. Laura Hrnyak Says:

    I’ll be honest… I haven’t read your blog in a long time so I wasn’t aware of everything you have been through. I can’t even imagine the year you have had. So many ups and downs….emotionally draining, yet exhilarating with each of Ryan’s accomplishments. I admire the Mom’s that you and Katie have become. You have taken this challenge and found a way to make it a wonderful bond within your family. It’s hard for those of us on the “outside” to see how difficult it must be to face the feelings of hurt, anger and depression that you have felt. I think it is so great that you can share your feelings and let other people know that it’s okay to feel this way. I am so glad that you feel you are at the place you need to be. I’m sure that is comforting.
    It’s so great that Ryan is pushing forward and making such strides. Hopefully she will continue to do this!
    You girls really are doing a fantastic job. You have wonderful support from your family and friends and I know how important that can be!
    Keep up the awesome work!
    Love you… Laura

  3. Amy Says:

    I love the update! Ryan is doing amazing! And I love that we are experiencing the same emotions right now and through the past year. I am so happy we found each other months ago on Unique! – Amy


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