John 2004

Furiously...

...getting ready to go to my nephew Wyatt's wedding, and then flying, celebrating, flying and getting back home. So I'm loading up old pictures of John, some may have been here previously, some maybe not, but in this time when we are waiting to see how John's gut is going to react to the steroids and feeds and all that kind of stuff it's just nice to see how far the little monkey has come. Thank you to everyone who has prayed for him and for us, you have no idea how much it means to us to know how loved John and we are!

So here's where we started, 2003, still in the NICU, but even then bright eyes, that watched everything and a little spirit that seemed like it was ready to take on the world.

Lord Have Mercy

Christ Have Mercy, Lord Have Mercy

Today we found out that I'm pregnant, about 5 weeks along. This is the 3rd time in under 2 years. For 13 years Mark and I thought we couldn't get pregnant. So the first one was a shock. Not as big a shock as the miscarriage that came just days after finding out we were pregnant in the first place. We named the baby Katherine, she was due around the 4th of July, this year would have been her 1st birthday.

Lord Have Mercy, Christ Have Mercy, Lord Have Mercy

The second one also came as a shock. The doctor that I saw with Katherine basically told me that I'd never get pregnant again. Wrong. Within a few weeks of learning that we were pregnant, we learned that we had yet another miscarriage. We named the baby Patrick, as we found out he was gone on St. Patrick's day. His due date is coming up, September 28th. His ultrasound picture is still in my purse, I just can't quite put it in the box with the baptismal gown yet, I can get close, but then I end up tucking it back in the journal in my purse again.

Lord Have Mercy, Christ Have Mercy, Lord Have Mercy

This time the baby's due date is sometime right after our 16th anniversary. I wonder, I worry, I pray. Will a few weeks find me still wondering or praying, or knowing that yet again I will not know my child on earth. I know that in this life there is suffering because we live in this sin-filled broken world, that this is not some punishment that God is afflicting on me for my past and/or present sins. I know that Christ died for me and for my children, my unborn child, my miscarried children that I will not hold until heaven and my precious John who even in all the physical ailments that he suffers with brings joy to me and to those around him. I go to bed this night with but one prayer on my mind, one prayer for John and his current health issues, one prayer for Mark who is the most amazing dad I know and for whom I hate to watch him mourn yet another child, for my baby and for myself, and for all the ones we love and who have touched our lives over the years.

Lord Have Mercy, Christ Have Mercy, Lord Have Mercy

John is my name...

...independence is my game.



Every day, in one little way, or in one pretty big amazing way, we watch John strive for more independence. This day he parked and reparked his chair several times, raised it up and rearranged it again to give himself just enough height to reach one of his flushes. He still couldn't quite get it, but each time he is getting closer, and we couldn't be prouder!

Helpers?

I like to cook, but I mostly like to cook when my guys are around to enjoy it with. Sometimes though when I ask for help in the kitchen it's not exactly how I imagined it would be.



John had already stuck his hand down in the flour and covered his face with it, then Mark added some more for good measure, this of course was after John had salted the grease for me, lol, there is just never a dull day here.

500 Posts and ...

...what more fitting picture than of John, of course, but the silly thing was so proud of his school sticker sheet that I couldn't get him to put it down so that I could get a picture of his face.



John accomplished 20 days of school in the past 6 or 8 weeks, I can't remember anymore how long it took us to do this, not a stellar record by any means, but it's 20 days and he's already excited to start the next reward sheet. He had a great time buying his Toy Story 3 game for the DS today and it might take him until the next reward sheet is full to figure out exactly how to play it, imo, that's getting your money's worth ;)

Watching the Big Boys

Steven, the 20 year old, who has come to live with us while he gets his life back on track is working to get an education which he can actually live on. For this he needs some math help, so we started on the blackboard and Mark decided to join in too.



As you can tell John absolutely loved watching the big boys do school :)

Medical News

The nurse coordinator called this morning from Omaha.
1. John's pathology - the way the tissue inside his bowels look - is horrid, probably the worst they have ever seen and makes it no wonder that the child could not tolerate any g-tube feeds or eating much. They are going to treat this with steroids, a lot of them, and then try to restart feeds. I asked myself why we couldn't have gone this route prior to this, but steroids lower the immune system and make getting sick easier and so it had to come at this time when John has had his ureter and bladder surgery and is no longer living with a constant bacterial infection anyway. All in God's timing.
2. Dr. Mercer said that there was no reason that John's prune belly syndrome would keep him from being listed for a transplant, should he need one. This is the second time that we've heard this and still just as comforting as the first, because when John was born we were flat told that he would not then or ever be a candidate for a transplant and that the day would come when we would just have to watch him die. That day may yet come, transplant or no transplant, but for today we WILL enjoy his life, as we have each day and by God's strength and peace will continue to do so.
3. This, steroids and feeds, are still a try to keep him off transplant effort, and one in which we need to lose no time, but also one which at least has somewhat of a chance.

So we will be headed to Columbia today as soon as we get John's school done this morning. We need to pick up steroids and he gets to put his last sticker on his reward page today so he will get to go shopping for a new DS game, lol, guess I had better check and make sure that the DS is charged ;)

As far as how are we feeling about all this, hopeful, but really when we live with John, who is smiles all the time and even on the days we are most scared manages to lose a second tooth and learn how to stick the index finger of both hands, one in each nostril, at the same time and smile really really big so we won't miss the new feat it's hard not to be hopeful, at least most the time. We still seriously live in the land of Lord have mercy, but on this broken sin-filled planet there is no place to live other than under the cross of Christ where His mercy is given new each day.

Just playing...

...and enjoying school stuff.

Relationships

Mark and Mellon have an interesting relationship, sometimes it's all love and snuggles and such, otherwise it's usually a chase :)

Bed Time Routines

Well over the years bedtime routines have come and gone, but always John's favorite is this...









...if all else fails, wrestle them to sleep ;)

Thank's Dad

Mark is amazing, I do most of the teaching, picking out curriculum, research and stuff for John's education, but Mark, the most wonderful dad of all, makes sure that we have all the things we need, even cool big chalkboards, thanks babe, you're awesome!

Teaching an Apraxic Kid to Read

I've spent years searching and digging for information on teaching a deaf child to read, most of it is written for deaf kids that do not have hearing aids, all of it seems to say that some deaf kids learn to read, some don't, and no one really knows why. Distinctly unhelpful. Ok, to be fair the one thing that I did read that was actually helpful was that the only thing in common among deaf children that can read is parents who are determined that they will - we are some determined parents, let me tell you.

Several months back I decided that maybe I should google 'teach apraxic kids to read' being as John's main issue is that he doesn't talk and all off-the-shelf reading programs are predicated on the fact that the child can repeat the sounds made by the teacher. I cannot believe that it took me this long to actually search for this, but it did, now though I have actual helpful information, some of which we have put into action and it's actually starting to work :)

So here's the list of things that an apraxic kid needs to have worked on so that they can learn to read:
1. phoneme - grapheme matched cards (cards with pictures that represent sounds)
2. color coded systems as visual reminders of language structures and of sound groups
3. sound categorization activities using multi-sensory approaches
4. rhyming work
5. explicit teaching of reading and spelling rules

Lol, I seriously had to google some of the words in that list just to figure out what they are talking about. But some of it we have already implemented and it's really working for John, it's slow, but it's working!

So let's start at the beginning:
1. Phoneme-grapheme matched cards: K-3 Teacher Resources is great for these and I've printed, cut out and laminated a ton, better yet I am using them with John in conjunction with Ordinary Parent's Guide to Teaching Reading and he is starting to make connections. The other day he was playing around scribbling and I asked him to write an 'E' for me, he thought for a second and signed 'elephant' for me, which we have been using for the short e sound. Each day I am seeing him make more connections and now he is even trying to make the sounds with his mouth and accomplishing a few here and there.
2. Color coded systems: At the moment all the consonants are on green and all the vowels are on red, as we move I will continue to color code everything.
3. Sound categorization activities: I'm still working this one out, but have found Phonemic Awareness in Young Children which is helping me to figure this one out.
4. Rhyming Work: Ugh, okay the book from #3 has some help on this but we struggle right here.
5. Explicit spelling and reading rules: Thankfully here there are two programs that have been written for children John's age. For spelling there is All About Spelling which we will start as soon as John is through learning the sounds for all his letters. This program is written for autistic children and other children who will benefit by learning the explicit spelling rules as a means to learn to spell. John is NOT autistic, but according to the apraxia people he certainly needs the rules. For grammar we have First Language Lessons which came highly recommended by a trusted friend, and although the book says it will take one year to get through we will see but it looks like it is just the right book for teaching John the explicit grammar rules at a pace that his grammar-phobic mother can handle.

After yesterday's post about John's current condition, and while we are till waiting for news of how it's going to go and what we are going to be doing, you may be scratching your head and wondering just why in the world I am focused on school, in short the answer is John loves to learn and is excited about learning to read, the other answer is John is turning 7 this winter, he wasn't supposed to have turned 1, if I plan on him dying and skip school and he lives to be an adult what do I tell him then, I of little faith was so paralyzed by fear that I neglected to give you an education, if his years or mine, as we never know when our time here is up, is cut short of him reaching adulthood we still have had a great time learning together - I might be John's teacher, but never underestimate what you can learn from a 6+ year old silly boy with a contagious love for life!

Clinic Report

Let me start this with saying that John looks awesome, he weighs 39 pounds 10 ounces, the biggest ever. He is learning his school stuff faster than ever. Is more independent, ornery and happy than ever in his life. To look at the outside you would never know what the clinic report had to say. As a matter of fact we were shocked that the report was so bad and the clinic people were shocked that he looks so awesome.

Monday, John was sedated and had a scope done to look at his throat, stomach and intestines and to get both aspirate and biopsies to see how he was doing. They found an esophageal varice. It is a bulging vein in his esophagus caused by escalating liver damage and has the potential to rupture and bleed. This is rather scary for 2 reasons, 1 we live 45minutes to an hour from a hospital that could actually do something to help him, and 2 it means that his liver damage is getting worse and things cannot continue as they are and him live.

The aspirate - a bit of intestinal goo - showed that the bacteria growing in John's gut is tons and loads but can be kept at bay with 2 antibiotics that actually work well with his system and one new probiotic that is of course expensive and not covered by Medicaid. (Don't take me wrong, we are ever so thankful and grateful for all the things that Medicaid can and does cover, but people who think it's perfect and we should all be on gov't health care have been deceived.) The biopsies showed ulcers and extreme inflammation in the part of his intestines where the small and large bowel connect. In normal systems there is a valve there that keeps things all going one direction, John doesn't have that valve and this is a real area of problem for him. In the medical team meeting in Omaha on Monday they will address this inflammation and give us the plan for that then.

For now this is what we know, even with all this inflammation and ulcers John is dealing with food better than he has ever done, eating more than he has eaten in a very long time and not throwing up or being sick from it. That gives us hope that plan A has a chance to work:

Plan A - get John off tpn/lipids as soon as possible and then hope and pray that his liver damage is limited to an amount that he will be able to live a whole life or at least several more years without the need of transplant.

Plan B - if plan A fails, evaluate whether John is a good candidate for transplant or not, if he is list him and hope that he is able to be a transplant success story (there actually are some for liver/small bowel) and if not, well I can't even bring myself to type that part out.

We are hopeful for plan A, we are scared of plan B, we are hopeful that plan B will work, we are hopeful, we are scared, we are thankful that no matter what happens to John or to us that he is in Christ's hands and his life is eternal no matter how long his life on this earth may be. Lord have mercy, Christ have mercy, Lord have mercy.

And the Consequences are...

...if you insist on drinking out of the potty and your head is too big and the little boy still needs a potty seat because his hiney is too little that you have a potty collar. Mellon is getting bigger, obviously.

Grandpa Would Be So Proud

When I was a little girl I loved doing anything that my dad was doing and it didn't matter if other little girls would have thought it was gross or not. I used to hold rabbits up for him to gut, helped him skin out and butcher our pet deer that got out of hand and shot my first rabbit before I was 10 - I also learned that I'm not a hunter, I just have no patience, but anyway. Mark was able to go to the milk-lady's and kill baby goats for them and procure good meat for us at a decent price. When he brought the carcasses home and it was time to butcher John never hesitated, never once acted like it was ookie or that there was anything that he needed to do other than jump right in and help. We are so proud of our little boy and my dad would have been too!

Burn Rubber

Most people don't have this issue with their children until 16 and driver's license time, but with the return of the chair and independence came the return of daredevil John and he figured out how to burn rubber right in his room - just park the chair with foot plates against the bed and hit the gas :)

Slow wheels...

...for a while this summer, from 4th of July through most of the rest of the month, John's power chair was broken and he was left at first with nothing and after the first few days with a manual chair. We had no clue how independent he had actually become until that independence was taken away. At first with the manual chair he could only move it forward or backwards but by the time that we returned it he was able to get through the house on his own and even turn some slow circles. Turning a manual chair requires that each hand do separate tasks at the same time, John has never been able to accomplish this until the manual chair, it took him a lot of effort and persistence but in the end he got it and he was so proud of himself and we were so proud of him too. One thing we learned from this was just how determined he is to be independent, we have always been determined that he should have as much independence as possible but now I can say unequivocally that John is bound and determined that he WILL be independent!!!!

A New Tooth

John lost his first tooth a while back, and now he has two more that are getting close to coming out. Every so often I find him wiggling them with his finger and he will tell me 'catch tooth' lol, poor kid probably swallowed the first one and he is bound a determined that this one is going to be caught, could have something to do with me telling him that he gets extra money for a tooth that I get to see, hmmmmm, just maybe.

Counting Down...and Up...

The calendar that you see John pointing to is a 6 month countdown until he gets to have a minor surgery to close his g-tube hole. We, parents, family and medical team, have all come to realize that John is going to be dependent on tpn/lipids, we may or may not be able to wean that dependence down some, but the motility of John's gut is just not going to allow him to be free of tpn/lipids. G-tube feeds that he previously has needed are just not needed anymore, he is eating and drinking more every day and has even changed to taking all of his medicine, even the nasty stuff, by mouth because he has been told that if he can go 6 months without using his g-tube even once he can have it taken away and he seriously wants it gone! As you can see the wet spot on the front of his clothes, one of the reasons that all of us want it gone, especially John, is it gets on his cool shirts, darn g-tube.

Oh and counting up, the calendar on the bottom is counting up to 20 school days, as soon as it is filled with stickers he gets to go see another movie at the theater or buy a game and lately a Toy Story 3 game for the DS is winning out, as of right this moment he has 4 more stickers to go :)

The other charts you can see are for alphabet signs, John knows his alphabet and can approximate a sign for all of the letters, has been able to for a long time, this chart is working on the ones that he can do perfectly, and so far he's kinda stuck on 'h' but it is getting much better and as a bonus so is '6' and '7' all of which use the strength in the pinkie side of the hand, a place where John has been particularly weak.

Wow, it's been...

...over a month since I updated the blog...well um, life has been busy. I'll see what I can do to catch you up in the next few days before it gets even busier :)