Dillon’s CP Blog

Doesn’t that title just make you sit on the edge of your seat? I bet you are dying to read this update! hahaha

Let’s see, can you guess how we started our day today? Yup! With acupuncture! Dillon did not cry today but he was pulling away from the needles pretty strong. Which is a good thing because he doesn’t always pull away from pain.

Then we went down for the PT and he did great. He was sleeping so he didn’t cough until the very end and he was relaxed so they could move his muscles all around.

In the afternoon I took a little rest. Grandma and I have this joke that we are in a “coma”. If we rest in the afternoon or after we get very little sleep at night we wake up feeling as though we are in a coma and can’t move. So I was in my coma. I walked with Jay to get a coke which helped. I am surprised I am not having major caffinee withdrawls since I have more coffee at home. Dillon’s nurse and some of the volunteers bring us ice coffee sometimes. I miss Dunkin!!!! I even had a dream that they have dunkin here and I went and got my picture with them just to show Dillon’s nurse!

Then we went to OT and again he did pretty good. He was actually awake – which means more coughing. But it is good for him to be more alert during therapy. We put him on a ball and he did a little bit of holding his own head up. They also put the ice sticks in his mouth for the first time today, but I forgot my camera.

After therapy JayDonn was playing with stickers and decided to put them ON Dillon. Boy boy can’t defend himself against his little brother!

Yesterday was another normal day, acupuncture, PT, OT, Jay and Grandma walking to the food market, and I walked to the super market. I don’t know what to write so Mom is going to write for me. The photos in this post are all ones Mom took…

     Hello from China.  Wow, it’s hard to believe that we have been here 16 days already.  Dillon is half done his treatments.  God has answered numerous prayers.     

     There are 13 beds on this unit (the international unit) so we have met quite a few people from different countries which has been interesting.  Several that we met at the beginnning have gone home already and several others have arrived recently. For three of the patients this is there second time to get stem cells as they had good results from the first time of getting stem cells.  Other than this unit, this is not an international city so few people speak English.  We are very thankful for the translators. They have been a great help.  They are trying to teach us some Chinese and how to get our tones right (quite a feat).   Our goal is to learn a hundred words before we go home.

     Dillon gets acupuncture therapy in the room four or five days a week.  Most days Jay and I go down with Tiffany and Dillon to Physical Therapy.  They work very hard with Dillon and the other patients.  Jay loves to ride on their little stools and watch some and then we usually take a walk or a potty break.  Yesterday was the first time that I have seen one complete session at occupational therapy.  I took Dillon down while Tiffany stayed with Jay and made supper.  Basically occupational therapy for Dillon is an hour long massage. They do an excellent job and  explain what they are doing and why.  They gave Tiffany a little book (Chinese/English) on pediatric massage.  The doctors come most days and are very concerned about Dillon.  We have gotten to know most of the nurses somewhat as most of them speak some English which is helpful.  They are very helpful about any special needs Dillon has.  Presently they are trying some new treatment for the skin around Dillon’s G-tube that is red and irritated. 

     Our days and nights are quite busy here as we are Dillon’s caregivers and he needs fed through the G-tube every three hours and after eating usually needs a lot of suctioning.  We are SO thankful for the night nurses and for Robin the day nurse and the helpers back home.  Besides Dillon’s care we are also doing a good portion of the laundry by hand in the baby tub and hanging it out on the bushes to dry. For those of you who know Dillon, know that he goes through an amazing amount of laundry.  Yesterday I got stung by a bee as I invaded his territory by hanging our laundry on a bush.  Praise the Lord, it was the one time I did not have Jay with me.  By the time I got back to the room my thumb was red and starting to swell.  We put some oil of oreganol P73 on it for lack of knowing what else to do and praise the Lord, in about 2 hours I couldn’t even tell that I had been stung.  Usually I swell up pretty good from bee stings. It itched later in the evening.  I put more oil on it and it was fine. 

    We can order food here (the hospital has a restaurant-all Chinese food and we can order out Kentucky Fried Chicken or Pizza) but are now trying to go the market (a five minute walk) most days and cook at least one of our meals. 

     To keep things fun and exciting we have Jay.  Yesterday Jay and I took a “two year old walk” to the market.  A “Grandma walk” means your goal is to get to the market, get your food, and get back.  No so with Jay.  We leisurely look at the ants and birds along the way.  We admire the dragonflies.  We stop at the little playground for a swing and to climb on some kind of climbing toy.  Then we go to the outdoor market and look over all the food and pick some out for supper.  Jay walked the entire way there and back helping to carry his apple and  holding his monkey-which is strapped to his back (while Grandma held the monkey’s tail).  He didn’t even have to go potty once.  Grandma is getting smart and limiting drinks before she goes out with Jay.  We’ve had too many shopping trips where we can not figure out where a restroom is.    (Tiffany adding: It is a good thing – so he won’t have to pee in any more trash cans!! hahaha)  

     Everyone here at the hospital and on our outings admires Jay and wants to talk to him and pick him up.  At first he was happy to have the attention, then he didn’t like it, now he seems to be adjusting more and will sit or stand quietly and look at the people and sometimes say hello or bye bye. 

     Overall we are enjoying our trip to China.  Dillon is getting good care.  I’m getting to spend time with Tiffany and the boys.  We have Skype to be able to communicate with our husbands and anyone else who has Skype.  We have the internet in our room and are able to watch church services from my son Daniel’s church back in the U.S.   The downside is that we are quite short on sleep. 

     We greatly appreciate everyone’s prayers on our behalf.  We know that our mighty, omnipotent, omniscient God has a purpose for us coming half way around the world.