ONE DOWN TWO TO GO!!!!!

Well Dillon’s first spinal is done! Two to go!
Dillon literally had the best night last night that he has had the whole time we have been here! I was supposed to feed him at 12 and 3 then wake Mom up and she would take over. I started his food at 12, I fell asleep and didn’t finish his food. Mom came in around 2-2:30 and woke me up! I feel so bad that I slept instead of feeding him. I am just not used to functioning on 4 hours of sleep plus little 10 minute naps at night. Anyways, Mom let me sleep then and she slept in this room and fed him. But she said she was able to sleep more last night while caring for him than any other night. And he must have been very good while I was in here, else I wouldn’t have been able to sleep for those two hours.
For breakfast we had our Dragon Fruit.

Here is the inside. I have learned a few things from the Dragon Fruit - the old saying “Don’t judge a book by it’s cover.” Outside it looks bright, colorful, exotic, fun, etc. I thought it would have this colorful inside, but inside it was white with black seeds. I also thought it would have this amazingly exotic taste, and it didn’t. It is actually quite bland. It was good, but nothing woo-hoo about it. JayDonn did like it a lot. He ate the most of it.

Inside the Dragon Fruit

They came around 10am for Dillon to take him down for the spinal. Here we are walking him down the hallway.


.I wanted to quick get a picture of him and I but he was covered by the blanket. But he really is under there somewhere. I didn’t take another one though because we were waiting for an elevator and tons of people were staring at us as it was.

He really is under there somewhere - see the hand?

They had said to wait in the OR waiting room, but there were SO many people in there and they were all looking at us, the translators told me to go back to our room to wait. He said the doctors would call when Dillon is out of the OR. There was the head of the Pediatric department (who we see almost every day), the doctor who did the procedure, another doctor, and maybe others were in there also. Normally the head of the pediatrics is not in there, if I understand right, but he wanted to be in there to be sure everything would go right. I kissed him good bye and watched as they took him back. Then I came back to the room and the three of us knelt down to pray for Dillon. We have been praying that God would dry up the secretions during the procedure, which didn’t seem likely since he slept all night (means he didn’t cough all night and would have tons of secretions). I was only here for about 20 minutes when the translators, Bill and Sid, came to get me because Dillon was done. Mom and Jay walked with us but didn’t go up to get him becuase there are so many people in the waiting area. When we got there they said we had to wait a while until he wakes up and 5 seconds later they were bringing him out! I asked the doctor how the secretions were during the procedure and he said they didn’t have to suction much at all becuase he didn’t have any! AMEN! God answered our prayers! We prayed he wouldn’t! They also told us they didn’t use much of the anesthia, just enough to keep him from moving.
Grandma and Jay seeing Dillon after the procedure…

Dillon going back to room after spinal

We are in the 3rd building back and the OR was in the first building. So we left one building, went through another and then into our building and up to the 3rd floor.

Going through the middle building to get to ours

.

Going outside to our building

.

almost there

The nurse had to go get an IV pole so Bill was holding it for us. He told us to take his picture, so we did.

Bill - the impromptu IV pole

.JayDonn playing with his crayons near the little house we built for him. He is getting overwhelmed with all the people coming into the room and trying to hold him, kiss him, touch his cheeks, etc. so I am trying to let him go in his house if he wants to get away instead of what he has been doing. He is scratching his neck and face if someone touches him and he doesn’t want it. He doesn’t know what to do, how do you tell people that it is too much, so he is scratching his own face. We are trying to teach him not to do that so I am trying to give him something he can do instead. The people just love him and at first he liked the attention, but I think it is getting to be too much for him since he isn’t sleep well too. He keeps getting awaken up in the morning and from naps. Instead of being able to go back to sleep people are taking him out of the crib so then he is up, long before he should be. Right now he is sleeping very well. He has been asleep for about 3 hours, which is his normal nap, but I don’t think he has had a nap this long since the first day or two.

JayDonn playing near his "house"

Dillon laying flat after the lunbar puncture. He has to be flat for at least 6 hours. We couldn’t feed him for 3. But he has had his food now and did ok and will soon be allowed to get up a little. He keeps lifting his head, I think he wants to get up and move around a little. That’s my boy, he’s a fighter!

After lumbar puncture.Poor baby!

After the spinal they had to run the rest the other part of the stem cells…. see they took the stem cells out and injected that into the back but the rest of what you saw in the bag the other day was nerve growth factor and they can’t inject that high volume into the back so the finish it up via IV.
THANK YOU FOR PRAYING! God answered our prayers - it went great! We have 1 IV and 1 spinal done. Two of each left. The next IV is on Wednesday. Please pray now for improvement. We have talked to a few people who said they started to see improvments after the third injection…. pray!

NOTE FROM TIFFANY'S MOM:Thanks, if you are reading this please leave them a note they are getting a little home sick, if you do not want to comment here you can write to her at tiffanykuenzi@gmail.com I know it would be appreciated!