Saturday, February 27, 2010

Quick update

Just a quick update. We've decided to hold off on the stool testing for Jax since he seems to be better without the natural laxative (which tells us great things!) and we'll have his weight checked in 2.5 wks to make sure he's back to gaining. If not, then we'll do the tests OR if diarrhea sets in again. I also have a phone conference scheduled with Dr. Hicks (the alternative doc) on Wednesday.
Here are some pics from the past couple days:

The boys on the couch and Brady being silly~


(sigh...)


Thanks for sharing Brady...


We had dinner at Jenny and Mike's house tonight and the boy's loved it.
Here's Mike showing Brady how to ride on their dog Porter~


The room that the boys were NOT allowed to be in unless 
they were strapped down in their chairs! Holy breakable things!
(~I'm so jealous of this room~)
Brady's obsession with the dog's food and water...
Mike had the boys completely entertained and laughing so hard!
Jaxon was lovin' it!
Jay was sitting back and relaxing while someone else entertained the boys!

Thursday, February 25, 2010

Update on skinny minny

I almost forgot to update about Jax's weight loss/diarrhea issue. *Fun stuff to read about huh??

I spoke with the pediatrician who discussed a game plan with the GI specialist. I informed the pediatrician that I was doing a mini-experiment with Jax. After thinking all night about WHY this has been happening, I had a light bulb go off. We've been giving Jax a natural laxative supplement, and maybe his motility is working well enough to not need it anymore. So I pulled it out of his daily routine, and his poo has firmed up from a water consistency, to a thicker liquid.
So after telling the pediatrician this, she agreed that could be the culprit. So I will see how Jax does over the next 24 hrs, and if it doesn't improve enough, we'll be collecting poo-samples (which sounds very "involved") and submit to Children's Hospital to test for a few different things (bacteria, malabsorption etc). If he seems better, then we'll skip the tests and do a weight check on Jax in about 2 weeks. We want to stay on top of this.

I've set up a phone conference with Jax's alternative doctor for next week Wednesday to discuss this as well. The fact that I pulled one of his supplements lit a fire under me to have a talk with this doctor and see what his game plan is on reducing the amount of these supplements. Jax is on 19 supplements administered 4 different times throughout the day. I have two big questions for this doctor:
1. Are these supplements supposed to CURE Jax for good, or MANAGE his symptoms?
2. (Depending on the answer to #1) How and when and which supplements can we start pulling back on, and which, if any does he feel will be lifetime supplements.

I'll of course, let you all know!

On a more domestic level - today was interesting. I've been having fights with Jax's feeding pump. For some reason at nap time during the afternoon it doesn't want to work and alarms NON-STOP, which doesn't quite work well for nap time as you can imagine. I've gone rounds with phone calls to nurses of how to fix this problem and the solution is washing out the bag between uses because this new formula gets stuck in the lines. Well...that doesn't always work. Today was no exception...but this time after fighting with the pump it seemed to work. Little did I know it just leaked 10oz of formula all over the bed and Jax. So fun to find! These things like to happen when Jay is out of town for business. So yes, the boys got a bath in the middle of the day while the cribs got stripped! Needless to say Jax will be getting his bedtime food a bit early so he can get some food in that skinny body!

Tuesday, February 23, 2010

G-tube covers

Brady is a walking machine, and he's starting to get up to a stand without pulling up on something.
Jax is doing so great with the g-tube feedings. He's at 74mls/hr, which is up from 44mls/hr when we got the g-tube switched over. He's hit or miss with the oral feedings. He decided breakfast and dinner were not really for him today, but he did well at lunch time.
We ordered him some g-tube covers from "Suzanne", a seller off Etsy online. They work so well in place of his gauze pads which fell out of his shirt all day (gross). If anyone is interested, I highly recommend! They are machine washable, and come with their own bag to be thrown into the wash.


Here's Jax showing off his new tube-covers.
(The white sticker on the side is just to hold the tubing down to his body so if it gets tugged, it doesn't pull directly at the stoma site. It's simply for comfort and protection)

Here is his cool camoflauge cover shown with his tube attached.
(And Jax showing how to operate his pump)

Krista lovin' up the boys Monday night.

Sunday, February 21, 2010

Crew cuts

We had a quiet weekend. Nana Jayne visited on Saturday and the boys got their overdue hair cuts. Unfortunately, it's become impossible to cut Jaxon's hair with a scissors because he has such an extreme meltdown, so Nana just used a razor, and Brady gets the same hair cut by default! So now the boys have hair very similar to Daddy's! I will admit, the boys do look a lot more alike with the same hair since you can't see Jaxon's curls.

Brady is quite the little walker, but he hasn't figured out that he'll fall down every time he walks into a toy, pillow etc. He still pretends to clean the house, and is an all around little sweety.

Jax is doing really well with his g-tube, and doing higher rates of food through him pump. He is taken off the pump at 10pm (that's a lot of fun to try and do while not waking him) until 7am in the morning. So we're training him to go through the night without food like we all do. So we've got him on for about 3 hrs when he wakes up, the three hours in the middle of the afternoon during his nap, and the first 3 hrs of bedtime. We need to get each of those 3 hour-feedings down to more like 1 hour feedings, but that will take some time yet. The even better news is that he's taking about a 1/4th of a small jar of stage 1 baby food each time we "taste practice". So that is so encouraging to see him actually EAT rather than just lick the taste off his lips. 

Jax has however really started in on his temper tantrums. Now that he's feeling better physically, he's finally showing signs of normal toddler behavior. He never felt good enough to be upset about things other than physical pain. So while it's difficult to deal with, it's nice to see him having normal behavior. Although...his temper tantrums are more "violent" than Brady's ever were. He will throw his body and hit you, which is heartbreaking and frustrating to deal with. We're trying to follow the doctor's recommendation to ignore it and keep him physically safe. 
Oh yes...I see the terrible twos coming at me by TWO right around the corner!

Jaxon's hair before the cut. The top part of his bangs 
were curling back like an old 80's hairstyle!
(sigh) There go the medical supply containers!
Jaxon has food on his face - he's number 1!
And this is a more milder scene of Jax getting his hair cut...
My crew-cut kids!

Brady looking like his Daddy 
(If his daddy had blonde hair and blue eyes!)
Dazed and confused apparently...

Thursday, February 18, 2010

19 Month Stats

The boys had their physicals at the pediatrician's office yesterday. Here are their stats:

Jaxon
Length - 31 5/8" (10-25%)
Weight - 21 lbs 4oz (<5%)
Head - 47.6cm (50%)

Brady
Length - 30 1/2" (5%)
Weight - 21lbs  12oz (5%)
Head - 48.6cm (50-75%)

Jax is an inch taller than Brady, which we knew just by watching them stand next to each other. Brady has started to put weight on, and is perfectly proportioned at 50% for his height-to-weight ratio, with a big noggin of course :) But he's passed up Jax in weight.
Jax's weight loss has the doctor a little concerned. She wants to further investigate why his GI specialist isn't more concerned over his chronic diarrhea that he's had for the past 7 wks with his formula change. I told her that I called to discuss it and we were told to give him Benefiber, but even with that, he still has diarrhea. Hopefully with the pediatrician's help, we can get something solved.
Jax was prescribed an anti-fungal cream to use on his bottom since his skin has taken such a beating with all this diarrhea. Brady has to continue to use a 2.5% cortisone cream on his eczema patches. Otherwise, they have a clean bill of health!

The doctor said she's received reports from the GI specialist and she can feel his amazement and excitement over Jax's latest developments. She said he even noted that one of his theories about Jax now is that he may have had trauma to his gut in utero or at birth and it's just now healing. Interesting how quickly his disease is being dismissed now that his symptoms are being managed. 

The pediatrician said it's just hard for western medical doctors to think natural supplements can manage such a harsh disease, and that's why they want to see if it can be proven. She said it's a very exciting thing for a doctor to think an answer for a disease can be found, so they aren't discounting the natural supplements, but it does have to be proven in order for them to treat another patient. She agreed that we should just live in the moment of good health and focus on Jax's continued recovery and long oral feeding road. She likes the idea of finding out exactly what has helped Jax, but thinks we deserve a break for now, we agree!

Monday, February 15, 2010

Our little Valentines

Happy Belated Valentines Day! Last year during this time we were doing a two week stay at Children's Hospital getting Jax's GJ-tube placed and not understanding why he was always so sick. We had to make the decision to stop using his stomach. This was the hospital stay that had a motility specialist take interest in Jax and he was put on the wait list to do further testing. This is about the time that it was obvious that something bigger was wrong. It's amazing what can happen in one year...we came close to losing it all and getting it all back. We'll never ever take what we have for granted. I mean...yes, we have a child that can't walk, talk or eat, and yet we think we're the luckiest to be right where we are. Because now we know...he will...

(sigh)
(smile)

In weekend events, the boys had a lot of fun. We took the kids for some dinner and a big exciting night of grocery shopping...us Lettenbergers really know how to party on a Friday night!

Angie and cousin Marley visited on Saturday and the kids had a blast. The boys really like having other kids around to play with, and we missed Miss Marley tons!
On Sunday we took the boys out to lunch and they were SO good. Brady likes tasting everything we have and Jax is really good with playing with toys and coloring, not to mention they both like to wave at the waitstaff as they walk by. The boys got to visit with Craig and Shannon after their naps at home, which always proves to be a blast for them with all that attention!

Jax is doing well with his G-tube and continuing to increase his volume every 2 days. He has shown no signs of discomfort at all. His miracle continues. He did well with physical therapy this morning, and has speech/feeding therapy tomorrow morning. The boys also have their 18 month physical (yes, it's hard to get twins a physical scheduled), so their next stats will be coming. Jax is a total skinny man lately, but hopefully with the calorie adjustment we just made with the dietician, that should resolve over the next few months. Brady is finally starting to put weight on. You can totally tell when each of these kids became mobile and active (aka the "thinning out" stage which the doctor calls it).
Brady has become an all out daredevil. I mean...it's out of control! He has fallen off something, down something, over something or smashed into something every.single.day. He has tons of battle wounds all over that handsome mug of his!

Marley and Jax talking about something!
The boys could not get enough of Marley throwing a ball up the stairway - 
they laughed SO hard!
A whole load of fair skinned cousins.
Stinkin' cute penguin backpacks that Marley gave the boys. 
(Brady is modeling here)
Jax reading Daddy his Valentine.
Then naturally he gave it a kiss...
My valentines...

 

Friday, February 12, 2010

So far so good!

Everything is going great with Jax feeding into his stomach. I've already been able to increase his volume 6mls/hr since the appointment, so we'll already be starting to turn his pump on later or turn it off earlier - we'll have to figure out what works best. We can tell Jax is really feeling better. He's started to whine/cry about small things now, which he never did before since he always felt so junky. It's nice to see him act more like a normal little boy! He's also starting to be a little better with physical affection (hugging, cuddling a little, wanting to be held) he never was up for much close contact ever. Now I have two toddlers who do not want me holding their brother!
Brady is our little dare devil with wanting to climb higher and higher on everything. He also gives me big hugs and open mouth kisses out of nowhere - he's just so lovable! Although he breaks through our gate that goes into the dining room, and loves to push all the buttons on the TV...those two things may make me go insane one of these days! I need one of those extra long pressure mounted gates to keep these monkey out of the dining room where all our breakable dishes, wine racks and the such are!

Brady pushing Jax around the house.
Brady walking to me!

Wednesday, February 10, 2010

Road to healing

Just to clarify about yesterday's doctor's appointment...
Jason and I will be meeting with the doctors in April to discuss any possible further testing to give Jaxon, ourselves and others answers. We want Jax to be in a very healthy place and hopefully far along the feeding process. So nothing would be happening anytime *soon*. Only discussions and ideas that could possibly help Jax live an even more normal life. The current goal is to continue this healing process and hope for the best. This disease has been our personal "cancer" that has taken us through hell and back. While we live each day always fearing the worst, but hoping for the best...we know an answer would be beneficial, but of course not worth compromising Jax's well being. No decision through this whole process has ever been easy, and we don't assume they ever will be.
Jax's health and progress has always been, and will always be, our only focus. If we're able to get answers to make his life easier and find relief for others, that would be an added bonus.

Thank you for all the support.

Tuesday, February 9, 2010

G-Tube!!

Jaxon has stunned the GI world, and it's finally in a good way! Jaxon's primary GI specialist took tons of notes during our discussion, and he couldn't get over the news. He had no problem at all switching out Jax's GJ-tube, to a simple G-tube button! Yeah! So no more going to the hospital to have a GJ button threaded in the radiology department. Instead, I was trained on how to replace the button myself - what a difference! (I'll try to find pictures online to show the difference)

We will be increasing his calories (since he's thinning out from being so much more active) and removing the Pedialyte from his formula recipe (since we don't vent out his tummy, while he's fed into the intestines), and we're also dropping Prevacid. Jaxon went three days without it while there was an insurance glitch, and the doctor said we can stop it since he doesn't seem to need it.

We have a new plan of feeding which includes increasing his rate of food 2mls/hr every few days to see what he can tolerate. This will mean shortening his time off the pump so much that he won't be able to stay on it all night the way he is. So that means we'll have a little more work between Jason and I with either setting our alarm to turn his pump off, or starting the pump later at night...we'll see how that all goes. But it's temporary since we are training him to get to bolus feeds now. A bolus feeding schedule would mean Jax gets all his food during short stints, rather than a drip like he gets now. So we may be able to feed him during breakfast/lunch/dinner and no pump at night at some point. Once we get to that place, we can REALLY push the oral feeding since his body would understand hunger. I'm hoping he can get into the in-patient (or at least out-patient) intensive feeding program through the feeding clinic when this all happens.

While the nurses were showing me how to place the g-tube and going through all the information (I hope there comes a day I don't have to watch Jax scream in such terror during these things), our GI doc was talking to the motility specialist who diagnosed Jax with his disease. I can tell their brains are running a mile a minute because the doc popped back in and said they want to run motility tests on Jax again in April if he continues on this path. They said that would be about 90 days without symptoms. I made a face at the doctor because that test is HARD on the body and it sent Jaxon into a nasty relapse last time.

The doctor made a good point, and I did a little soul searching during this conversation because we DO need to medically prove WHY Jaxon is better. We of course think it's because of the natural supplements, and all of our diligent hard work, but it DOES need to be proven. I promised Jax a long time ago that he was not going through all of this for nothing, and we'd help save others. So the plan with the motility testing is that if Jax's results show that he has no motility problems at all, then the doctors believe he is part of the magical 5% of patients who just "grow out of this", if he shows to have some uncoordinated nerve function, but he's still having great management of symptoms, then they'll study the road that his natural supplements are at play, and we'll start pulling some away and the such to study him.
I respect the doctors enough to know that they need hard medical evidence, but can also tell they are really excited at the prospect of finding hope for others.
And that's all I've ever really wanted.

Please keep up all those great cheers for this little guy, there's such a long road ahead of us, but at least we truly feel like we are finally moving forward.

This is the last picture I have of Jax with his GJ button right after a 
bath 2 nights ago, but it's covered in a diaper/gauze wrap to help with any leakage for bedtime.

Sunday, February 7, 2010

Quick note - ONE YEAR EXACTLY!

I was thinking about how crazy it was that Jax hadn't used his stomach in over a year (feels longer!), so I looked it up in my blog archive and found it to be exactly ONE year ago yesterday Jax had his tubes changed to a GJ and stopped using his stomach. Now, one year later to the day, he's started using it again...what a coincidence!

Using the tummy!!

Jaxon has been feeding through the G-port of his tube for two straight days now without any vomits. It's AMAZING and a bit unbelievable since he hasn't used his stomach to process food for over a year. We have an appointment with the GI specialist on Tuesday. I need to discuss how his tube leaks and what we can do. I highly doubt the doctor will let us switch to a straight G-tube anytime soon, but that would be neat.

For now, we cut up a small diaper and place it over his stoma site and keep it in place with a mesh wrap around his belly. This absorbs any leakage. Obviously we don't want to have to live like that, so hopefully we're able to find a better solution through the GI department. The GI specialist will be knocked out of his socks when he hears all these new developments tomorrow. Such a nice way to shock doctors!

Brady loves to walk now. He still has to pull up on something and then take his five steps or so to another object, but he's getting there. He's babbling up a storm, but still sticks to shaking his head NO, or saying, "yeah" or "yay". Jax is starting to say "yeah" now as well...they have very similar sounds, which is one of the very few things very similar about them!

We're good parents...
Brady climbing into something and getting stuck as usual!
And I get the camera before helping him out...as usual!
Jax showing off his tubes feeding his BELLY!

Thursday, February 4, 2010

Feeding clinic update

Jax had a good session at the Feeding Clinic. He wasn't really up for tasting the carrots we were trying, but he did decent with drinking some water. I received more tips and techniques to practice with Jax. We know that to really further the chance of oral feeding, Jax needs to be taking all his feeds thru his G-tube (into the stomach) via bolus feeds (feeding in time increments like meals, rather than a slow continuous drip) and of course keeping it all down. So that's the direction we need to start going toward. The only current issue is that the stoma site (hole that the tube goes thru) is leaking. So we have a request into the GI dept for an earlier appointment (our next appt is March 9) to see if we can remedy this. It's not fun to feed your child thru a tube into their stomach, just to have the food pour out of a hole and soak their shirt. We may try to fill the balloon up with more water (the balloon holds the tube in place on the inside wall of his stomach), so we'll see!

As for Brady, well he did tons of walking last night! Jason and I played keep-away with a water bottle, which forced Brady to walk back-and-forth from us. I think we need to keep doing this, to keep him motivated! Jax wasn't very happy with us during his exercises, but they have to be done to get him strong!

Tuesday, February 2, 2010

Dirty Job

Jax had a little bit of a hard time during physical therapy today since he hasn't had any for over two weeks. We're trying to extend out his last few sessions that are covered by insurance until we find out if he's approved for more sessions. The physical therapist said it's very hard to get approved for further sessions, but we're trying. Jax still has a weak trunk and right side, so he's nowhere near being able to stand unassisted anytime soon. We really hope he gets more sessions covered.

He woke up vomiting this morning, but has been fine since. The only thing I could find that could've possibly contributed to it was that his vent from his tummy was bent all the way back, so it was pinched off not allowing any air or fluid to vent out. Maybe if it was like that all night, it was too much for him to handle. We'll see how he does. I did feed him the last of his formula into his G-port this afternoon to see how he'd handle it and he did just fine. The only issue is that formula leaked out of his stoma site and soaked his t-shirt. Um...yeah, that's gross. So you feed your child and it leaks out of a hole in his stomach onto his clothes. Hmmm...any suggestions from other tube-mamas out there??
We have the feeding clinic at the hospital tomorrow, I'll keep you all updated.

As for Big B, well he has decided to do death-defying stunts including climbing to the highest point of anything and standing straight up. I've lost minutes off my life all day finding him in odd places! He has become quite the sponge with copying things we do around the house. He took a wash cloth and washed down/dusted the whole house for me. What a little helper!

Brady washing the wall by his highchair. 
We have to wash this down constantly, so he wanted to do it too!
And clean the highchair.
And the kitchen table.
Apparently the stool was dirty.
And lets not forget the counter!
Then there's Jax. Who would much rather play with cars or his other toys!

Monday, February 1, 2010

Manic Monday

We've had a very productive Monday morning with speech and feeding therapy. Brady showed off his standing and some steps for Mr. Nick, while Jax showed off how well he would take tastes of squash puree. 
We're starting to give Jax a little bit of his formula in a sippy, and also introducing a mesh feeder with fruit and other foods in it. This way he can suck and bite it to get the flavor to stimulate his taste buds, but not allow him to actually bite a piece of anything off into his mouth. I'm not confident he'll like flavor in his mouth from the mesh feeder, but we'll certainly try it! If Jax does okay taking formula drops from the sippy cup, we'll be deciding soon to use the g-port of his feeding tube to use that tummy again! We have a feeding clinic appointment on Wednesday at Children's Hospital - they will be shocked!
I'm so happy to see that the vomiting went away with the fever. I was once again reminded that he will always be compromised during illness...how could we forget?
The past week has been so chaotic, that there aren't many pictures:

5 minutes alone in a room results in 
my house looking like a frat party blew through!
(We have officially lost one of the window cranks)
This was a sick-day for Jax...he felt so crummy even during his favorite cartoon.
The rest of the days were spent laying on me while he cried. 
Brady is not a fan of Jax cuddling with Mama apparently either...there were no dull moments!
Brady loving the mega blocks!