Holy Saturday

John woke up feeling cooler and in a pretty good mood this morning. Not long though and he was having some trouble breathing. We called the pediatrician and were told that all he needed was breathing treatments with albuterol every four hours and some pediatric cough and decongestant medicine. He has taken some extra naps and needed some extra ceralyte for the day but has gotten along well enough that if he wakes up well enough we will all be able to go to Easter Service together. John has some visitors for the weekend, our friends from Springfield Mo are up for the Easter Celebrations and John has loved the extra attention, hugs, and kisses from Aunt Becky Uncle Elmer and their hoodlums. A Blessed Easter to all who read this from all of us in Slater Missouri.

Maundy Thursday

John's day has been lively and interesting. Since his mom reported this morning he has been doing quite well. The bandaid came off without incident and the boy has been eating. For lunch he had potato chips and drank a lot of water. After lunch he pulled his ears, took his hearing aids out himself (he's not supposed to do that yet), and so we put him down for another nap. He woke up in a good mood and we had hopes that he would be able to go with us to church tonight. We decided that he needed to spend some time in his gait trainer. We rigged up his formula pump on one of the attached devices so that he could stay on his feeds while he was toddling along in his trainer. With this set up he was able to stay in his gait trainer for over an hour. We all had a good time playing together and going all over the house. At this point John tends to move his legs so that he goes backwards more than forwards. After spending so long in his trainer he was very tired. He went down for a third nap and slept until after I had to leave for church. When I returned home he was awake and had been for a little while. He spent most of that time with his mom as his captive audience because of a very snotty nose. We finally put him to bed but he woke up about an hour later and has had to have a breathing treatment to loosen up his chest congestion. He is now settled in for the night and sleeping quietly. We are looking forward to seeing his Occupational Therapist (OT)tomorrow (friday) morning and she has had us doing some weight training with John. (m&m minis tubes with quarters and nickels about 6 oz.) He has done very well with this and we are hoping that he will willingly show off a little bit for the OT. We will post again after the visit with his OT.

Phew!

John woke up looking much better and feeling better too! His finger still bleeds when the bandaid is off, but at least he's staying interested in enough other things that he's keeping it on for the most part. We talked to his GI nurse practitioner and we are going to try the med changes again, more gradually, but still taking those baby steps forward. At the moment he's down for a nap. Hasn't eaten anything but has played and smiled and is doing well.

Medicine changes aren't fun

John is just starting to settle down and get to sleep. We have been working on a couple medicine changes and they have not gone as well as hoped. So we are taking a couple of those inevitable backwards steps but those are only ever temporary. Given a few days I'm sure he'll be ready for a few steps forward again.

He did have a fairly good day despite the med changes. He played well this morning and had a ton of french fries for lunch. After going for labs he kept pulling the band aid off his finger and bleeding everywhere, at one point he seemed to be trying to paint with his bloody finger - this is not always appreciated by passersby ;-) At the moment he is keeping the bandaid on his finger and hopefully by the time he has gotten it pulled off again his 'finger paints' will have all dried up. What a silly boy! He had a fun time at Wally World with a couple of the girls from church who got big smiles out of him when they let him hold their cash.

Our best guess is that if he makes it through the night without puking, he'll be fine. If he throws up we'll be headed to Columbia to get him some fluids. He tends to throw up when his CO2 level gets low, it was 18 at labs, which is low but not critical, and since we are giving him Bicitra, a medicine which helps increase CO2 levels, back at his regular dosage and feeding him Ceralyte, an electrolyte replacement fluid like Pedialyte but more effective for short-gut kids, through his g-tube we are hoping that it will pick up and he will be full of silliness in the morning. At any rate I'll post again in the morning with his progress through the night.

It was fun with Papa!

John's day has been pretty good. He woke up early enough this morning to say good-bye to Papa, Mark's dad, who had gotten to stay with us for a week and now was going to stay with Mark's brother and his family for a week before returning home. Getting to spend time with Papa was a real treat and John enjoyed his company immensly, as did we all.

We did have a few new tricks for the day. John figured out that he could pick up a fig newton from his tray and put it in his own mouth and take a nice big bite and also that he doesn't particularly care for fig newton. The face was priceless as was the immediate handing over of the fruited cake. Shawna, John's phycial therapist, came today. Her usual day is Thursday but John was ready and had a great time in his gait trainer. He didn't even cry when she put him in it and then moved around quite a bit and with much more evident purpose than he had ever done before. Today was also John's first day to work on his homework from school yesterday. Amy, his speech therapist at the MOOG School for the Deaf in Columbia, Mo, gave him the assignment of learning to pretend to feed a stuffed animal. This is quite a delightful homework assignment and one that we will be enjoying through the week. Today we were feeding the elephant that Mark and I got him when he was in New Orleans. He liked sticking the spoon in the elephants mouth, he was even okay with giving it a drink from the cup, but most of all he liked to use one of his oral syringes and give it medicine in its belly and oh checking it's eyes, ears and mouth with the pen light was the best of all. The second time he played with this for dad he mostly just wanted to medicate the elephant, belly, mouth whatever, he was just sure that the elephant needed medication now! You can tell what happens a lot at our house.

Today at lunch he decided that he only wanted Sprite, which he shouldn't have, but when I gave him the empty bottle he hugged it, worked it around to where he could tip it up to his mouth and made sure that the very last drop went in him and not on his clothes. For supper, well the most fun was to poke the knife in the butter bowl, this didn't really accomplish much eating but it was rather amusing.

John is tucked in bed, sleeping peacefully and storing up energy for all of tomorrows adventures.

Check-up Time

...in our neck of the woods. John finally stayed out of the hospital long enough to make it to a regular GI check-up. That's a lot to celebrate right there. But there's more. His GI nurse was thrilled with him, he looked great, his weight is finally stable (no gain yet, but no loss and that is a big victory) and his labs looked fantastic. She called this morning to tell us that his blood counts are up to normal levels and therefore no more Monday and Thursday epo shots - HOORAY!!!! On our scale this morning John picked up a little more weight even and is looking chipper and playing with toys. His little cheeks are starting to fill out again and I'll see if I can get him to smile for the camera sometime today. Our GI nurses advice yesterday was to "take him home and
keep doing what you're doing, he looks great." Wow! What a wonderful thing to hear. Thanks everyone for your prayers and well wishes, your support means more to us than we could ever tell you. In Christ's Love, Mark, Gina and John who is currently lounging on the futon playing with two enormous stuffed ducks ;-)

Check-up Time

...in our neck of the woods. John finally stayed out of the hospital long enough to make it to a regular GI check-up. That's a lot to celebrate right there. But there's more. His GI nurse was thrilled with him, he looked great, his weight is finally stable (no gain yet, but no loss and that is a big victory) and his labs looked fantastic. She called this morning to tell us that his blood counts are up to normal levels and therefore no more Monday and Thursday epo shots - HOORAY!!!! On our scale this morning John picked up a little more weight even and is looking chipper and playing with toys. His little cheeks are starting to fill out again and I'll see if I can get him to smile for the camera sometime today. Our GI nurses advice yesterday was to "take him home and
keep doing what you're doing, he looks great." Wow! What a wonderful thing to hear. Thanks everyone for your prayers and well wishes, your support means more to us than we could ever tell you. In Christ's Love, Mark, Gina and John who is currently lounging on the futon playing with two enormous stuffed ducks ;-)