All the little milestones

Today, Nathan participated in his 5th grade field day.  I remember doing this as a kid and it was a sign that summer was right around the corner.  We had rain almost the entire month of May, so I was happy that today was a beautiful day for him to be outside and have so much fun with his classmates. I can’t believe that in less than a week we will have a 6th grader.

Madison finished school yesterday and will be going into 8th grade.  She finished the year on the Honor Roll and we could not be more proud of her and all her accomplishments.  These are the type of accomplishments that we sometimes take for granted.  She is so smart and able to do so much independently that we need to be more mindful to check in with her to make sure she is okay.

Today was a happy reminder that Nathan is loved by his teachers and his peers.  I can’t begin to describe the worry that I have felt over the years wondering if when he is not with me if people were kind to him or paid attention to him.  I have wondered if he really had friends at school, I have wondered how a whole year can go by without an invitation to a single birthday party.  And every so often Nathan will question it, but mostly, he is happy.  This school year was the most pleasant year Nathan has had so far and for that I am a happy Mama!

We go back to Children’s Hospital on June 10th to get the final results of the DNA testing that they did.  We should have a definitive answer at that time.  The Doctors have requested that just Jay and I attend this meeting.  Words do not adequately describe the pit in my stomach.  I literally ache over the idea of what we might hear.  But I pray daily for help to get through whatever we may face.  I ask that you pray for us as well.  I will update everyone as soon as we are ready to let everyone know.

As always, thank you for the love and kindness you have shown to our family. It truly means the world to me especially.  The other day we received a post card and it was such a sweet reminder that people have not forgotten about our son.

Stacey

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Service Animal

I am putting some feelers out to see if anyone has a contact to train a service dog?  I have a contact for a Therapy dog, but would like to look at the possibility of having a dog trained as a Service dog for Nathan.  These are two very different types of training and allow the dog into different places. From my research,  this can be very expensive and I am trying all avenues to see what  is available.

Thank you,
Stacey

Some answers

I don’t want to leave everyone  hanging with the results of our tests.  We found out some potentially  heartbreaking  news today.  However, in order to be 100% sure, they want to do one more blood test that will take 8 weeks to get back.  At that time,  we will know for sure what we are dealing with.   I am not comfortable at this time sharing what we found out.  I will ask for your prayers for Nathan and our family.  It was one of the worst case scenarios  for us and we need your prayers now more than ever.

Thank you,
Stacey

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Say a little prayer

Tomorrow, April 8th we have our test results appointment with the genetics department at Children’s  Hospital.   We will find out if they found anything out on Nathan’s DNA testing they did  back in December.  They will also determine  if there were any “incidental” findings on either me or Jay.  If they don’t find anything, we will have to revisit a year or two down the road.  We will definitely have to schedule an MRI for this year to compare to the one last March.  This is all so scary to us and I just don’t know that our hearts can handle anymore  heartbreaking  news. So, if you have some time tomorrow,  say a prayer for our family.  We would really appreciate  it. 
Thank you,
Stacey

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Happy 11th birthday!

Today, we celebrated Nathan’s 11th birthday.   Every day is special, but birthday’s are always fun.  Grandma came down to help celebrate and we went out to dinner.  Nathan was so excited to have them sing to him, but when they came to our table,  he became very shy.  I have never seen him behave that way before.   He usually loves to be the center of attention.  It was very cute.

Tomorrow,  we are off to Florida and heading out on a cruise.  We are really looking forward to spending some quality family time together and looking at the beautiful blue ocean water.
Thanks to all of you who continue to follow our story, it means alot.

Stacey

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How far we have come

I periodically read back through some of my old posts.  It brings back alot of memories.  Some good and some not so good. It takes me right back to what I was feeling in that moment.  I remember exact words of what doctors said, I remember what rooms looked like, what Nathan was wearing, if he was happy or sad that day.   It is amazing how words can throw me right back into that moment.

I realize how far we have come.  Nathan has made huge strides.  Some days it does not feel like it.  We see him everyday,  so the little things are a little harder to notice.  But when I read through this page, I realize he has come SO far.

He turns 11 next Wednesday and is becoming this little man right in front of my eyes.  He is 5’4″ and has the biggest feet I have ever seen on a child.  We are literally buying him new shoes every couple of months. He has developed this really cute sense of humor that makes us laugh.   He loves his sister so much.  He loves us and it makes my heart melt every time he hugs me.  Hugs are hard to come by with Nathan.  He will give you a hug on his terms. Usually a little forceful.   So when he gives you a real, gentle hug it usually brings tears to my eyes for these moments are so fleeting.  I just want to stay like that.  

We have our next genetics meeting on April 8th.  This will be the results of the full exome panel that they did.  They also took me and Jay’s blood.  So if there were any incidental findings we will hear those to.  There is a very real possibility that we will hear that they found nothing and they could have also found what they have been looking for all along.  If they find nothing,  we wait a year or two and try again.  The hope would be that science will know more later.   I would like an answer, but only if I can do something and we have pretty much been told we can’t.   I am torn.  I just have to trust.

We do have some exciting news coming up.  Stay tuned for an announcement soon.
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