Heading in the right direction!

 Today Sam had her follow up with Cincinnati Children’s Rheumatology. She had bloodwork earlier this week and was pretty nervous. Dr. Schulert was as wonderful as ever and immediately set her (and I) at ease. He said her bloodwork is continuing to trend in the right direction. 

Her Sed Rate is nearly a quarter of where it was in April and her CRP is back to normal!!! Huge win for the inflammation numbers. She is a little anemic, but almost all of her bloodwork had improved. 

He checked her joints and range of motion and said she looked even better than in July. Her knee swelling is completely gone. 

As she danced and sang through the appointment he said he still is in awe that Naproxen has helped her the way it has so far. Seeing the sick shell she was in April, now back to her perfect curve on the growth chart and full of sass and fun. 

Thankfully at this point he is happy with how the current meds are working. Her kidneys are in great shape and she isn’t having any side effects. So we will stay on twice a day naproxen. He had thought about taking her down to once a day, but I brought up the concern of not knowing what caused it and the fear of going backwards. He has been amazing at listening to my concerns and acknowledging Pandas without ever mentioning it. She has an eye appointment in November to make sure the Inflammation isn’t effecting her eyes and if that is all good we can avoid changing to the Arthritis medicine for the next few months. 

He said the type of Juvenile Arthritis she has and the way she is trending she could go into remission at some point by the time she is an adult. 

She will have repeat lab work and an ultrasound in 4 months and visit with Dr. Schulert again. Overall it was a great visit and we are so thankful for her continued health and all she is able to do again. 

She has a few more goals to reach, like getting her leprechaun kick back and getting her speed back. But, this girl has come so far and is so brave! Looking at her lab work trends and seeing how sick she was and knowing how that had effected everything is hard to hear. The memories of what she has been through and continued medicine and appointments are hard on her. I am so proud of her tenacity and her continuing to push herself each day. 

She is o happy this appointment and bloodwork are over! Now on to Soccer tournaments, volleyball and the school Christmas play! So much to look forward to! 

So much to celebrate...

What a difference a year makes.  4th of July will forever be a reminder of how lucky we are.  Not just for our freedom or for the country we live in, but for this guy....

Last year on the 4th he came home from the hospital.  Scared and frail.

  Better than in the days leading up to this picture, but still not himself.  He had been through hell and our family had lived through hell.  Not knowing if he would be okay.  Not knowing if he would come home.


A lot of "crap" stemmed from the support (or lack there of) that was received over Corey's medical scare.  Sometimes in life when bad things happen you realize who really cares.  Who really has your best interest at heart.

Seeing this little guy today- healthy and happy- packing for Disney World- reminds us that miracles do happen.  Bad things can turn out happy and that God does hear our prayers. 




http://emmandconnorpoems.blogspot.com/2012/06/today-tonight-and-tomorrow.html


http://emmandconnorpoems.blogspot.com/2012/07/this-morning-i-went-back-to-hospital.html

a little smile and a giggle

This morning I went back to the hospital.  Even though he was a little scared and his back still hurts, there is a huge difference in his eyes.    

I got a few smiles and even a giggle...

 We went to the gift shop and mom got him some army men.

 By the time I left he was playing "grape killers" with his Dad with a big smile and giggles all around....so I can say....

Today my mission was accomplished...now here is looking to tomorrow that he can come home!

Today, Tonight and Tomorrow.....

Today I sat in my car and screamed.

Today I not only told God I was Angry but I let him know exactly how I felt.  Alone in my car, windows rolled up, at the intersection of Mt. Alverno and Delhi Pike.

Today I watched my parents relive the worst days of their lives by hearing two little words.

Today I walked into my sister's house to find my brother in law's eyes red and swollen from tears and staring at a computer screen trying to find out as much as he could, probably rather seeing a different answer

Today I saw my nephew lying in a hospital bed being comforted by his mother who watched her brother die from the same thing gripping his little body.

Today I asked for prayers and had his little name lifted so many times it made me thankful for such power.

Today I heard my mother sob in sorrow.  Watched as she dealt with fear and sadness as well as the disgust of being immobilized by her own body to the point that she could not see her grandson in the hospital.

Today I watched my father's eyes continuously fill up with tears as he tried to fight back the demon thoughts that filled his head with the dreaded diagnosis that took his only son.

Today I was enraged that one person had the power to upset my mother even more by telling her that "it wasn't a big deal and her 25 year old great nephew had it a few weeks ago".
If only this person knew.  As I tried  to comfort my mother after hearing these callous insincere words I told her that maybe this his their cross to bare...they will never know the love we feel, because they have never cared to love the way we do.

Tonight I sat in a hospital room with a blonde haired little boy.

Tonight he asked me for a bag of the chips I bought and rolled his eyes and snickered when I burped. 

Tonight I kissed him on his forehead before I left the hospital, partly because I wanted to kiss him and partly because I wanted to feel that he was "cool as a cucumber" for myself.

Tonight I stopped by my parents on the way home, because I know that they are in pain.

Tonight they stood in front of me unable to control the emotions that weigh in their hearts.

Tonight I hugged them and realized I pray I never know how they are feeling.  To watch your son die and live your life with the little flicker of fear that it may happen again only to have your worst nightmare come true in one of their own, again.  Fear has a way of taking over, fear that stems from Grief is so much stronger. 

Tonight I hugged them again and went home.  Knowing I could do nothing to help them, nothing to ease their minds.

Tonight I pray that everyone gets a little sleep and that Monday we have a culture as clean as a whistle where nothing has grown showing bacteria.

Tonight I will Thank God and maybe apologize for yelling, even though Father Chris told me I could.

Tonight I will Thank Corey's guardian angel, his Uncle Mikey, for leaving us the knowledge of the symptoms to look for and for the courage to go straight to the hospital as soon as they saw them.

Tonight I will pray and I will pray and I will pray ......

Because Tomorrow I plan on getting a big hug from a little blonde boy who is feeling much better