A Little Helpful

Thought we'd share this pic of John enjoying helping daddy make brownies, he was a little helpful! We've spent the day relaxing, the weather is cold and icky and it's been a good day to just hang out and read books, cuddle and enjoy all being home together and well.

Doctor Prescribed Naps

Yeah! John was discharged from the hospital and we brought him home this evening. Of course we had to stop at McD's and get him a happy meal, which he devoured, because some little boy will not eat hospital food. He also won't eat unless daddy feeds him, so we had to stop on the way home and switch drivers so that dad could feed him. There is never a dull moment with John!

The attending physician today was THE authority on short-gut at Children's in Columbia, and aside from giving him some extra vaccinations for HepA and Pnemonia she also said that whether he likes it or not, he needs at least one nap every day. Hmmmmm, don't suppose we could get anyone to prescribe that for the parents, but for the shortness there will now be a nap everyday. She told us that because of John's health issues he just needs the extra rest and even though he thinks he's grown out of a nap, he hasn't!

John was a riot at the hospital. He woke up this morning feeling great and by the time I got there he was ready for shoes, gait trainer and running, running, running. He did take a good nap, but only after he attempted to escape out the front door of the hospital too many times to count. He thought it was way cool that daddy was on the second floor waving good-bye to him, but then spent a good amount of time doing circles around the information desk looking for where daddy went, the information people of course could not answer that. He then decided that they obviously needed more volunteers in the information booth and so attempted to run up the ramp to lend them a hand, very funny, but not very helpful. On the way back to the room he had to stop and 'talk' to everybody and finally after a bit of lunch he was ready to settle down and nap for a bit, of course the first thing he asked when he woke up was 'daddy' thank goodness daddy wasn't too far away!

Sunshine in Missouri

If you look out your windows this morning as the sun is coming up you will notice that it's rising from Missouri! At least that's how it feels to us. Mark called this morning with the first news of the day and John is doing awesome. The docs came in and woke him up and he's all smiles and talking and feeling great and strong and happy. Mark is going to talk to the herd of docs on rounds to see if John just needs more rest than normal while he is trying to heal these brain lesions, or if he's just going to have problems from them now and again while they are healing despite his activity level, other illnesses. Through the night there was no more puking, and at least some sleeping, as much as the hospital ever affords! The real sun is not even up yet it is already a brighter day!!!

Hanging out with Daddy

John is spending this evening receiving IV fluids at Children's in Columbia, hanging out with his daddy watching tv and 'helping' daddy read a book ;)

It's been a long couple of days around here, but we do finally know some of what is going on. John was not doing well yesterday morning, slept until 11 then was loopy and tired and weak and finally after a couple hours of sitting in his chair playing as much as he could he was ready to go back to bed. He was still signing, and had that bright effervescent smile but something was wrong and both he and I knew it, we just didn't know what to do about it. Mark was gone to the circuit pastors meeting but when he got home and John was ready to get back up it was readily apparent that something just wasn't right. We took him into Columbia to see Dr. Beal, John's pediatrician, but upon examination he looked fine, just weak, tired and a little bloated. We took him for labs and by then he was starting to feel much better so we went out to dinner, during which John was a riot so we were hoping that this morning all would be past and we would be back to normal.

Unfortunately this morning came and normal did not. John was again tired, weak and drifted off into a fog now and again. We called the pediatrician again to check on lab values and just to let them know that he was still not feeling good, or rather not feeling good again. The lab values, while not great, weren't horrific either. I think this was more scary than not, as bad lab values would have given us a clear indication of what was wrong, but with the labs being in at least the okay range it looked like what we were seeing was seizures again. After talking to the neurologists nurse and waiting things out for while, John got progressively weaker and finally started throwing up. At that point we spoke with the pediatricians at Children's in Columbia and left for the ER.

Most of the trip to Columbia, an hour or so drive, John was very tired and weak enough that he couldn't hold up his own head, but about the time we got to the high way he perked up and was ready to have the reading light 'on' and the visor mirror 'open', both of which he signed for appropriately and to have some of the 'red drink' that we had - Coke of course! He was bright and doing well for a while and then started throwing up again and after that he was just wiped out and went to sleep for the rest of the ride.

At the ER he threw up several more times and finally, after a couple hundred ml's of IV fluids were in he was sitting up in the bed, playing with things and getting back to normal. This time his lab values were bad. At least this is something that we know what to do to fix!

So what we know for the moment is that John caught some kinda bug that caused the puking and resulting dehydration, we are also pretty sure that the other things that we saw were neurological, but after talking to a doc that has been with John through all of his adventures in the hospital of late, we are somewhat assured that even though what we saw was most likely neurological, it was very much less severe than the last 'attack' and that one was less severe than the previous and so forth, so it does at least give the impression that it is something that is healing, yet not healed right now.

What we don't know is if the amount of activity that John has had, the fatigue level of life this last several days has contributed to his problems both neurological and bug/dehydration. We hope to get some insight into this from the docs before John comes home this time.

It's been a pretty hard couple of days for a little guy, a pretty scary couple of days for his parents and we all have reached this part of it trying our very hardest to remember that John is in Christ's hands and that God's Will for John is perfect in every way, even if we don't understand it all the time and get scared in the middle. So we go to bed tonight hoping that tomorrow brings more news, hopefully good, and with the prayer on our lips for mercy and sanity for our little silly boy and his overly silly parents.

Grandpa would be proud

As you can tell the little munchkin is exhausted tonight, but I couldn't resist sharing this pic as it would have made his grandpa smile from ear to ear!

Today was John's first day to go to speech therapy with just mommy, and believe me we are all exhausted, but oh what a first day it was! Now that John has speech 3x a week, MWF, we just can't all go all the time so he's going with just mommy on Monday and Wednesday's. This morning he was excited to be going and then a little disconcerted that we forgot dad. He rode most of the way with his hearing aids in the cupholder, but was oh so excited when we got to school. He walked in like a champ and did the very best he's ever done in speech so far. Part of his therapy is to imitate the lip movements required to make letters, today he was working on 'b', 'm' and 'p' and he did great, even when 'n' was introduced he was able to stop putting his lips together and was trying to imitate the tongue movement. He matched his vehicles and vehicle cards like a champ, and signed very well for the mom, dad, baby, dog and bed and even started making a new sign for 'wake up'. When he got to sit on the floor with Miss Amy he did great with the ball knowing whether he was to roll it, throw it, or bounce it. This is also the first day that he came home with homework!

I took him to see his pediatrician's nurse practitioner, to have her look in his ears. This morning before we left he was digging in his left ear with his thumb, aside from just looking goofy I was worried that maybe he had an ear infection. John has only ever had one, and then we only knew about it because he went to the doc for other things and it was found upon examination. The speech therapist and I both looked in his ears and we thought they looked strange, definitely not the pics that you see on the net. Well according to the nurse they look fine for John's ears, go figure. But that wasn't the cool part. There was a little basketball goal in the room and with some support John was able to walk over get the ball, take it to the goal and then hold it up high so that I would pick him up and he could sink it! What a star!

We also made our first foray to the Columbia library and we were both impressed with the sheer volume of books. I don't think that I've ever been to a library this big before, at least not to one this big that I could check books out from. So after some searching John picked out a Sandra Boynton book and we were back on the road.

John has made great strides lately in how much and how well he wants to stand. His physical therapist tells us that it is very rare for a child to develop legs first, that most delayed kids have very strong arms before they get strong legs. John is now spending just a second here and there standing completely on his own, and lots of time he will lean on or hold something so that he can stand without someone holding onto him. The little silly sure is amazing!

Hush Puppy

Our little guy had a pretty good day today! He spent lunch and a little while before it running around the parish hall of Mark's country church watching the other kids and impressing everyone with how well he got around and how much he could do. After a short nap he was up and ready to play again, this time at home with his Fridge Phonics, he really likes them the most if we will sing along, so it turns into a whole show. We've been adding the signs for the letters in and he's picked up a few, but even we don't know them all yet. For supper we had fish and hush puppies, he wasn't too impressed with the fish, but when we showed him how to sign 'shhh doggie' for the hush puppies it got very entertaining. Silly guy, he loved taking one bite off of each one and then feeding them to the dog, of course the dog really enjoyed this too and we're not complaining that we didn't have to put the leftovers away. After a while he pulled his ears and then sat happily sharing hush puppies with the dog but we had to do an emergency wipe off because once he was ready for his hearing aids again he was getting grease and cornmeal in his ears. He finished off the night by running through the house barefooted, playing with his trains a bit and then finally saying prayers and going to bed.

Running to bed

Yesterday was kinda hard on a little piglet, changing antibiotics makes for a low-energy day but by last night he was feeling much better. Long after he was put to bed, and went to sleep, he woke up and started talking and had to come out and play for a while. He was so silly, he didn't want his ears but he kept telling us that he wanted his shoes, finally we told him no shoes until tomorrow, a concept I'm not sure he fully understood, but he was happy when we put him in his gait trainer and told him he could walk to bed. He was a little too excited for walk and took off at a run and ran right into the refrigerator, and with a huge grin on his face backed up, raced through the living room and instead of going to his room escaped into ours. Silly guy, then he had to play with all his trains and finally was ready to go back to bed, nothing like a diaper clad toddler running through the house at night to make everyone smile, albeit I don't think the dogs were, but well they don't have much of a sense of humor about this anyway!