Saturday, December 10, 2011

Ryan's First Birthday Party

Ryan went to his first birthday party at a friend's house tonight without Mom.  It was a pajama party for Diego, Nelda's son.  (You probably know that Nelda is our friend and Ryan's nurse.)  I have to admit I was VERY, VERY nervous about him going without me.  I knew he was in good hands with Nelda, but I was still very nervous.  I'm nervous about all my kids going to their first parties without me.  So, why should anyone be surprised that I felt anxiety about Ryan going to his first party without me? 

I tried to be cool about it, but geesh! I couldn't wait until it was time for me to go get him!  When I did pick him up, I walked into the house and he was sitting in his wheelchair at the table.  Diego's older sister was next to him on one side and Grandma was on the other side.  He was obviously enjoying himself and all the fun sounds.  There was a house full of people and he was so happy!!

On the way home, Ryan was so talkative and he insisted that I talk or sing all the way home to him, which was about a 45 minute drive home.  It was wonderful to see him so happy and talkative!

Thursday, December 8, 2011

Dwight is in China

Dwight is spending several weeks in Shanghai, China doing some consulting work with his current team.  It's unfortunate timing, but thankfully he'll be back home just in time for Christmas. 

If you know Dwight, you probably also know that he is extremely adventurous in eating.  So he's enjoying all kinds of fun things like ... chicken foot, cow stomach, chyo do fu (also called stinky tofu), durian fruit, fish eye, shrimp eyes, and cow eye.  (The picture below is either fish or cow eye.  I'm not sure which, but does it really matter???)

Dwight says shrimp eyes taste nothing like fish eyes.  He also said cow stomach tasted a lot like chewing on a rubber band. 

I'm not sure I'd want to eat much in China.  I suspect I'd be eating a lot of plain rice.  I'm glad he enjoyed himself.

Monday, December 5, 2011

The Skin Biopsy

Ryan's skin biopsy went well today.  He was very irritated that we woke him up, and he screamed about the numbing shot.  (Anyone who has ever had one of those shots can't blame him.)  They took a tiny bit of tissue from the back of his arm.  The good news is that the Dr anticipates the test results will be back within 4 weeks or so.  That is MUCH better than the 6-12 weeks we had been told it would take.

 (hmmm... awkward picture)

The other thing that I learned today which is really good news is that although this disease can affect any of the children in the family, it typically strikes at the same age within a family.  Thus, where Ryan was symptomatic at birth, it is unlikely that any of the other children will test positive for the disease.  They may test positive as carriers, but it is highly unlikely that they will test positive for the disease itself since none of them have exhibited any symptoms.  Whew!  That was a HUGE relief.

After the appointment, Ryan returned to his usual self.  You can see from the picture below his new hat device that the school OT came up with to help him keep his head up.  It's really quite brilliant! 

Well, Ryan was totally playing with me after his appointment today.  He seemed to think it was funny that he had figured out how to get his head out of the hat.  Smart boy.

Sunday, December 4, 2011

Facebook Response

I woke up this morning thinking about the possibility of a diagnosis for Ryan and had so many questions.  The think that lingers in my mind is that with every profile I read, the child was already meeting milestones.  Ryan has never met one of his milestones.  I know that sounds really negative and I don't actually mean to be so negative about it.  Yet, there is no way around that.  He simply hasn't.   Yet, he was slowly progressing upwards for almost 3 years until this past June when he suddenly and quite drastically lost so many of his skills. 

Take a look at this picture taken in November of 2009:

 See how Ryan has his head held up?  Although he's 2 years older, he can't do that anymore.  He can't hold his head up.

I woke up thinking about all this and I went online to look for new information.  If you haven't realized this yet, I thrive on information.  And, let me tell you ... I have lots of new words that I need to more fully understand.  While online I also did a quick check to see if anything new had posted on Facebook, and I saw this response from one my favorite people, Howard Hurley. 

I should first tell you a little about Howard Hurley.  He is a great big guy, and he was my Dad.  No, not my dad in real life, but he was my Dad on stage in a show called Saturday's Warrior that we did back in the early 80's.  I was 14 years old, but played a little 9-year old girl who carried around a monkey-face sock doll.  In real life, he is a Dad.  A great Dad to a lot of kids.  And, you can tell that he's a great Dad by what he posted as a reply to my posting about Ryan's positive test.  Let me share it with you:

"Tina, the enemy you understand is better than the enemy you don't We know Ryan's disease is heartbreaking, but you must know you have a "cheering section" that think about you and your family often. If this is the diagnosis, well, it's pretty devastating, but it's a known quantity, and somehow, you have to deal with it. And I know you will, with your characteristic good attitude. I hope you find peace through this experience."

I started to respond to him on Facebook this morning and then realized it was too long and I wanted to preserve what I was typing as a reminder to myself for days ahead.  There might be a day when I need to remember.  Lately, when I've been reading in my scriptures, I've noticed that word a lot... Remember.

So, "Dad", this is my reply to you...

Thank you for your post.  I definitely think knowing is  better than not knowing.  You're right that I wouldn't choose this as the diagnosis, but I wouldn't have chosen any of this for him. Yet, I know that Ryan chose to come to earth even though he knew the package he was choosing.  It has been such a comfort knowing that. I cannot imagine life without having Ryan, even if it will be brief by our earthly standards.  I am thankful to know that he will be a part of our eternal family.  I will give thanks for each and every day that I am able to enjoy him. 

I also know the peace and comfort will come.  We are promised that He will comfort us and I know by experience that His promises are sure.  I'm so blessed to have so many who are willing to succor me and bear my burdens with me that there are truly times when I don't even feel the weight of them.  Thank you for being willing to be in my cheering section!  Thank you for your confidence.  I have learned strength and character from watching you and others like you!  Thank you!