Saturday, June 29, 2013

A Birthday Update

(sign delivered by Child Life Specialist at CHO)
So, in case you somehow missed it, yesterday was Nathaniel's 13th Birthday! And even though we were in the hospital STILL, we celebrated in style!
First thing this morning his OT brought him an AWESOME hat that her wore all day long
In the morning he had PT, and speech, and we got the GREAT news from his doctor that he was cleared for a SHOWER! Yes, that stinky boy hadn't had a shower since June 4th.. .24 days.... yea, he SO NEEDED it and his back is now healed enough to have running water (no soaking water yet, but running is now OK). So for OT Nathaniel got to take a SHOWER in the real shower! That was a birthday treat for both of us!
The other good thing from the medical end of life is that Nathaniel's bowel and bladder have balanced back out to what is more normal for him!! We are FINALLY back in cloth diapers! Which of course is delightful in the hospital (you see the sarcasm font, right?) but it is so much better than disposable and completely stripping every time we cath! We do have to run a 24 hour urine test starting today, but that is more to check the chemical components, since function level he is back to normal. I am really happy about this development, I was starting to get really worried that it wouldn't balance back out to something we were used to.
In the afternoon, for his therapy session, Nathaniel got to go on an OUTING! He and his therapist and one other patient went on a Fun Friday outing to a Pizza place for Nathaniel's birthday. They worked on ambulation in public, using his new equipment in public and worked on social skills. Fun times! He came back in high spirits to a special treat at the hospital!
Pixar is a big supporter of Children's Hospital Oakland, and they have a new movie out, Monsters University! The kids at the hospital all got a cool (reusable) goodie bag with stuffed animals and baseball caps, and there was a screening of the movie for everyone! You could go into the group area to watch it, or you could watch it on the TV in your room. Knowing that we had company coming we chose to watch the movie in our room with all of his new goodies.
We had special guests show up in the middle of the movie, so Kaleb, Gavin and Audrey got to see lots of the movie too!
Towards the end of the movie one of the Pixar animators that worked on the movie came in to visit and draw a personal picture for each of my children. He talked to them, hung out with them a bit and drew each of them a picture. It was pretty cool.
(Nat & Audrey with their personalized pictures)
After all this excitement we took the kids outside to play. They had a blast with bubbles, but all the  pictures are on Bea's camera! And we played a game of Sorry, and in general hung out in the sunshine and let the kids be kids. It was nice to watch them laugh and giggle and be NORMAL. I am looking forward to many more normal minutes when we are back home. It has been hard for me seeing the serious side of life all the time and not getting to see the fun, giggles, laughing, goofing side of life... I need more balance in my world!
When we came back into the room there was a wonderful cake that the hospital provided for Nathaniel.
We were able to share cake with our friends and nurses before our friends left for the day. It was so great to see Audrey again. I am counting the seconds until we get to be a family together again. Audrey headed off with our friends to celebrate Gavin's birthday with him the next day, and Nathaniel and I settled in for another night.

Nathaniel's special day was filled with fun deliveries (presents from Gramie & Papa, Aunta, Bri and Jo, the hospital and his therapists), Balloons galore, friends (new & old) and lots of love. It isn't the birthday I would have chosen for him, but the people around us made it great for him anyways.

And he wasn't forgot by friends at home either! My Facebook page is filled with hundreds of "Happy Birthday" wishes for the boy, he got phone calls and special pictures, and I KNOW he was covered in prayer. Thank you to so many people for making sure he knew how loved he is on his special day!
Through it all, no matter how happy I was for him, I have been fighting horrible depression and gloom. I just don't know how I am going to get through this next two weeks, except for one step at a time resting in Him the whole time. I did rotate back into the family house today, and I am praying that a few hours in a regular bed will help me out, but I am also the only one here with Nathaniel right now, so I am not getting long blocks of sleep at a time. Today we are back to work, with therapy and healing and learning our new normal. I pray that my heart adjusts to this journey and I start feeling a little better, more myself.
Thank you to all who helped make Nathaniel's birthday special. Thank you to those who are still following our journey weeks in, and thank you most of all for your prayers.
Here is a cute video of Nathaniel playing with his birthday present from Bri & Jo... can't wait till he is home and shooting THEM with frogs! Hope it brings a smile to your face.