Tuesday, January 30, 2007

My Spoon is Too Small!

Well we have reached yet another toddler mile stone, okay maybe it's not really a mile stone but surely there are other toddlers in the world with this same crazy idea. For a while now John has refused to eat off baby or toddler utensils and with forks he likes to have the same one that we have, but today I thought I would sneak a smaller spoon in on him for lunch, well nothing doing. He took a few bites and then got to really paying attention to the table and what size spoon daddy and I were eating with and he was done. Finally I traded spoons with him and he went on and ate his lunch. He cracks us up with his insistance that he is in charge, and well I guess from the look of who was eating with the smaller spoon at lunch he really is!

All in all John is doing GREAT!!!! Mark took him to see the pediatrician today for a follow-up from the RSV. He's picking his weight back up, looks great and got a good report all around. The doc did say that he would need the synergis shots until he was much bigger and stronger and that we would be doing them again next year. I'm relieved, while I don't particualy care for shooting him in the leg, I'm thrilled that he won't have to be in the hospital with another bought of RSV, or at least not as bad as the bought he just came through.

Tomorrow is our first day in 2 weeks to go back to speech therapy, so we'll see whether it is the little stinker or the little sweetie at school tomorrow!

Friday, January 26, 2007

You Feed You

This is the new saying in our house, as John is learning how to feed himself rather well, uh, when he wants to! We were having a problem getting John back to normal when we got home and talked with his GI nurse practitioner yesterday and she said that the only answer was to make him eat. Of course all John has really wanted to eat has been either McD's or ice, hmmmm, the one is not convienant 3 meals a day and the other has no calories, silly boy. So yesterday we bribed, begged and did whatever it took and John ate like a champ and again today and now he is doing much better. We can already see that he is feeling better and stronger and everything is working well. He's been running around the house in his gait trainer, chasing the dogs and starting his trains and signing and communicating so well, it's day and night from last week, thank goodness!

The other news is that we've been tagged. I never heard of this until it happened, lol, but that kinda figures. So what it means is that I'm supposed to tell you 5 things that we've not blogged about and then tag 5 other bloggers. Well I don't know 5 other bloggers but I do know 5 things that we've not blogged about. Since this blog is about John we'll stick with that!

1. Since John was born during December in the middle of Advent at a time when the readings were centered around John the Baptizer that is who John is named after. Allen is after his grandpa, my dad who passed away in 1990.
2. John has an insatiable appetite for books, not just that they are his favorite, but that he is attracted to them beyond anything else ever, and not just his board books but all books. He especially loves to 'read' the sign language dictionary and anything that either of us is showing an interest in. I don't know if this has anything to do with the hours and hours that we sat together and read when he was in the NICU and in the hospital in New Orleans, but he sure does love those books!
3. I don't think that I've ever blogged about John being adopted, actually I don't really even think of it much anymore and when people who know ask me if we ever hear from mom it takes me a minute to stop and figure out what they are asking. John is a gift, a blessing to us straight from God through the hands of family and through many, many friends along the way, we are blessed beyond measure by the little short guy that runs thorugh out our house in his diaper signing about everything.
4. When John was a couple weeks old in the NICU he got cheers from all around when he peed on the wall! There was a big debate going on with the docs whether he would need help emptying his bladder since he didn't have any stomach muscles to speak of. Well one evening as I was bathing him in the NICU and his nurse and a couple others were standing around visiting he peed a nice little stream about 3 feet to the wall and the whole NICU erupted in cheers.
5. Second to books is John's desire to go. At the hospital he knows how to get from his room through the halls to the elevator and once on the first floor can make a bee line to either the front doors or the garage doors without directions or help, but at home he waits for someone to leave a door open and then runs outside, of course in his gait trainer this looks a bit more like four-wheeling than we are comfortable with but at least it's only a step or two and not a flight of them. John is pretty much fearless when it comes to those kinda things, but then I guess anyone who has been through all that he's been through doesn't have much left to be afraid of!

Phew, on that note we'll see if that fulfills my being tagged, lol, if not I'll try again tomorrow!!!!

Wednesday, January 24, 2007

Settling Back In

Slowly, slowly, we are getting back to normal around here. John is still tired and not feeling well from the RSV, he still has a good amount of stuff in his chest, but is sleeping a little better each night. Of course his schedule is off because of being woken up early by the doctors but he's getting better about getting back to his normal schedule too. Yesterday was actually a pretty good day in which he ate all day, played hard and had a good time, today well not so much, but he's snoozing in his own bed building up energy for tomorrow so we have hopes of it going better. He did finally want to eat a little before he went to bed and he was rather helpful taking down the Christmas tree, well at least before he realized that it was a never-ending process, hmmmm, he doesn't have much of an attention span for long-winded tasks, come to think of it neither does his parents ;) We did finally get all the Christmas stuff put away and then he had a great time riding on his plane and playing the piano, at the same time of course. We're hoping that he wakes up feeling even better tomorrow, his occupational therapist is coming and we're sure that he'll be glad to see her. It feels weird not going to speech and physical therapy during the week, but we know that he'll be glad to get back to them next week and stronger for the week of rest. His speech therapist came to see him at the hospital, he had a great time while she was there and cried after she left, I told him he could go and see her soon and so then he was okay.

Monday, January 22, 2007

The All Clear is Issued

Yipee!!! Hooray!!!! The discharge paperwork is being written up even now. John had a great night and is so very ready to go home, so are his parents. Actually at the moment John is taking a nap waiting on the papers, but this could have something to do with a little guy who decided that he was awake at 3am and spent a good half-hour or so running up and down the halls in his diaper and barefeet. It was cute beyond words and finally tuckered him out enough that he would lay still and go to sleep. It was his first night to sleep without oxygen, without heart monitor stickers on him, without the O2 sat strapped around his big toe and without the glare of the monitor lighting up the room and I think he was just a little giddy - me too, I enjoyed getting to visit with the nurses for a while and dad, well dad enjoyed the peace and quiet and snored right through it. We've cancelled all appointments for the week and are planning on just staying home. John needs to work on eating and picking up his weight, playing with his toys and chasing his dogs and hopefully watching mommy sew! Hopefully we'll even convince him to pose for a pic or two so we can share his smiling, well, at home, face with you after 9 days of hospitalization we'll be excited just to share a pic with home in the background ;)

But Not at the Hospital!

John will drink cow juice out of his own cup, or better yet out of the measuring cup...but not at the hospital!
John will eat cocoa puffs, even feed them to himself...but not at the hospital!
John will eat dried potato flakes by the handful (while his parents watch in dismay and disgust ;) ...but not at the hospital!
John will eat peas, cold, out of the can, warmed, out of a bowl, by hand or by spoon...but not at the hospital!
John will eat M&M's...but not at the hospital!

Do you see a trend here? Well the little boy that would eat nothing, okay maybe one bite a day, but only reluctantly and rarely a second and never a third, even of whip cream, McD's fries, chocolate and M&M's will readily eat and ask for and even cry for food at home. Hmmmmmm...I think we're growing up. A year ago being at the hospital was the same as, if not maybe a little more fun than being at home, after all at home there are not shifts of women to come and oh and ah and play with a little boy during the day and night. Now it seems that home is more fun, or at least better. Sure am glad John is finally in agreement with his parents and we hope and pray that we get to spend more time at home!

Sunday, January 21, 2007

The Corner...

...is turned! John is remarkably better today. So far he has been off oxygen for several hours and his sats are staying up. He's been for two quite long walks through the hospital, the first one he stopped at the coke machine and told me that he wanted a drink and then proceeded to the exit doors that he rammed a few times and then signed for me to 'open please' and finally was nearly in tears when I told him that he couldn't go out today. The second trip we made back to the coke machine through a long and adverturous route of the hospital and all the way back John would walk for a while and then stop and tell me that he needed some 'red drink please'. He calls it 'red' because we usually purchase in cans. Back in his room he was still not ready to eat, but hopefully that is coming too. I'm not sure if he is still just feeling too bad to eat, or if he has gotten picky enough that he's just not willing to compromise, or if the 50ml/hr of g-tube feeds is just enough to ensure that he doesn't get hungry enough to eat, or maybe just a combination of all of it. So the next time daddy comes he is bringing a McDonald's Happy Meal and hopefully that will be the ticket, of course last week John wouldn't eat period until he was out of the hospital and so it make take actually leaving the premesis. Who knows, lol, I'm thinking this is just one of the blessings of having a rather independent minded 3yo.

As far as getting out of here goes, most likely this week, slim chance on tomorrow, but we'll see, at least at this point we know that we are getting close and that has all of us excited!

Saturday, January 20, 2007

Shortness on Patrol

John spent the night sleeping on his left side to let the right lung try to drain and voila this morning he was feeling better. We are ever so grateful to Richard, the Respiratory Therapist who gave us this sage advice last night.

John woke up this morning in a better mood and feeling better than he has in days. He was able to sit up and play and even got to be completely disconnected from oxygen, IV and everything so that he could go for a short walk in the hall. He had a great time, even though he was very tired by the time it was over, but everyone was glad to see him patroling the halls again. He's napping now, but should be able to get up and patrol again this afternoon. His oxygen sats are better today and they even were able to turn his oxygen down when they hooked him back up to it.

John, as always, headed straight for the exit when he was in his gait trainer, but he's not ready to go home yet, hopefully though we are seeing the light at the end of this tunnel and we'll be home next week sometime. He was reluctant to give daddy kisses, because he didn't want him to go home yet, but of course he finally did and when daddy comes back John will be shouting 'daddy' as loudly and as excitedly as a little pumpkin can sign! Thank you for all your prayers! One more time God is healing this little shortness one breath at a time and he should soon be back to his normal routine of life.

Friday, January 19, 2007

The Blessing of Stubbornness

And boy oh boy does John have stubbornness, and it is certainly a blessing that is paying off for him at the moment!

John's night was pretty rough. Twice his oxygen saturation numbers dipped below 90 for long enough to have everyone discussing whether or not it was the time to take him to the PICU and twice our little stubborn guy recouped back above 90 just in time to stay in his room. Right now he is sitting in bed, leaning on daddy for support, reading books and watching some tv. He's actually the best we have seen him for well over 24 hours and even has a few smiles and is blowing kisses. He is certainly not out of danger of this worsening again, but every hour that he spends getting stronger is another hour that he is closer to winning over this virus. He's holding up pretty well, mostly sleeping and then waking long enough to cough and cough until he is exhausted and then goes back to sleep. Our current interlude of being interested in having his hearing aids and playing a bit is a welcome reprieve from this cycle, both for John and for his mommy and daddy.

The chaplain came by today to check on him and to let us know that his little grandson is doing pretty well for the moment. We have a wonderful Lutheran chaplain here, who not only speaks our language of faith but has intimate understanding of chronic illness as his little grandson is just a few months younger than John and has a complicated and fragile medical history too. We are very thankful to be here with this caring pastor who not only prays for healing and strength but also reminds us that we are here not only for John but as Christ's hands to reach out to everyone around us.

I will try to update again tonight, but access to the computer is not always possible during the evening and if I can't get access I'll update again tomorrow. We are certainly thankful for all those that are calling and dropping by, and for the prayers that are being said for our little stubborn blessing and his two stubborn parents.

Thursday, January 18, 2007

48 hours will tell

Our little guy is in need of your prayers again today. John was admitted to Children's in Columbia on Sunday and is still here, still running a fever. He has RSV and may or may not have pneumonia on top of it. They have him on oxygen and IV fluids and are running a few antibiotics as a precaution. For now he is doing pretty well, still in a normal room on the floor, but they are watching him closely to see how the course of this illness will go. He has excellent doctors here, we couldn't ask for him to have better care or more caring people working with him. They do tell us that within the next 48 hours they will know how severe this infection is going to get and how much support John will need to get through it. They are at this time holding off on putting him in the PICU but have assured us that they will be proactive and move him early, also that they will intubate him if he continues to trend down, as opposed to letting him get into a crisis situation first. So for the moment we are holding on tight to Christ's promises, and to our little guy. Since putting him on oxygen he is doing a little better, so we are hopeful, but ultimately we know that this infection will run the course that it will run and that Christ's will for John is perfect, even if it means that it will take our little buddy a while to recover.

Saturday, January 13, 2007

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.

Thursday, January 11, 2007

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!!!

Wednesday, January 10, 2007

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.

Monday, January 8, 2007

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!

Saturday, January 6, 2007

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.

Friday, January 5, 2007

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!

Thursday, January 4, 2007

Lab Results

Yesterday we got in some of the lab results from all the tests that were run while John was hosptialized the last time. The expanded newborn screen that tests for metabolic degenerative disease and such came back normal and the acid levels in John's cerebral spinal fluid was also normal. After talking to a couple doctors about this yesterday we understand it to mean that so far they don't know what caused the akinetic seizures and possibly won't ever know, while that's not exactly comforting, it does mean that they can't find one of those devastating things, and that is comforting. John will have a follow-up appointment with the neurologist on the 18th, and we'll find out more then. We also found out that he is a little short on B vitamins, so we're adding another vitamin for him to take, he does great though and now takes all his meds by mouth and willingly!

Best of all, John is doing great, learning more and more every day! Today his OT comes in and it's also the first meeting with the parents as teachers lady. We counted signs a couple days ago and John can do over 60, and over half of those he does spontaneously and appropriately! He's also getting fast enough with 'more please' that you have to be watching to catch the 'more'.

Tuesday, January 2, 2007

Happy New Year

Our first day of '07 was filled with resting, relaxing and hanging out. John got to go to Walmart with daddy to have the oil changed in the jeep and thoroughly enjoyed wandering all over the store in his gait trainer while they waited for the jeep to be done. After a late afternoon nap he was ready to play and hang out and watch Curious George.

We'd love to make a New Year's resolution of 'no hospital' but since that is largely out of our hands we'll just keep our same old plan of life that every day be the best it can be whether we are at home or not! John has big things coming up, speech therapy goes to 3x a week this year and we start with Parents as Teachers tomorrow, I'm still pretty skeptical on that one, but we'll see how it goes.

He got to spend New Year's Eve at the party at Mark's country church and had a great time ringing the bell during bunko and tossing a domino here and there during a game of chicken foot. He was amazed at all the kids and spent a good bit of the evening just watching everyone. He loved the enormous Christmas tree, and oh yeah, the ready availability of chocolate - seems like everyone brought some! He made it until nearly 11 and then he was pooped, and so were we, so we brought him home and he was so ready to snuggle in his bed.

Real Kisses

John has been working on learning to suck through a straw, and has accomplished it even though he isn't horribly efficient with it. Thanks to that he learned to make a little sucking noise into his hand, this was so cute, and he thought it was so funny the first couple times he did it. It took a couple days for him to learn to make the same little 'kiss' noise into our hands and today he got it and then was able make real pursed lip kisses! It was so exciting, and yep I know I'm weird, but we had a big celebration on today, the first day of real kisses!