Friday, July 31, 2009

1 yr appointment

The boys had their one year check up this afternoon and are doing great. Here are their stats:

Height (Length): 
Jax - 28 1/4" 5%
Brady - 28" <5%
(This is the first time the boys even touched the charts for length, so they're heading in the right direction)

Jax - 19lbs 9oz 5-10%
Brady - 19lbs 13oz 5-10%
((this office's scale is always about 3oz lower than the hospital, so Jax actually gained more than just 1 oz in 10 days from his last check up and I think Brady is right at 20lbs))

Head circumference:
Jax - 46 1/2" 50-75%
Brady - 47 1/2" 75-90%

The boys have Jason's big head, which the doctor attributes to their lack off ear infections. Apparently big heads lead to a better shaped inner ear warding of ear infections. With both boys having reflux and Jaxon's  respiratory issues in the past year, they are all shocked that there has not been one ear infection. I have a tiny head and always had chronic ear infections my entire life...they have Jason's head/ears! Oh...and they think the boy's eyes will turn brown. Each boy has a brown patch on their left eye, so I thought maybe it was just going to remain like that on both...but the nurse thinks their eyes are changing to Jason's color. The doctor is SO pleased with the large jump the boys have made on the charts from their last appointment. Brady has been given the okay to drop formula and his hemogloben was great, so we can drop his iron suppliment as well. I have NO idea how bedtime will go without a bottle of formula (rather than a sippy of milk) but we'll be finding out!

As for Jaxon and the bacterial infection - the nurse relayed Jaxon's symptoms to the GI doctor and he absolutely thinks he has some bacteria building up (especially since he's had constipation). So a prescription has been called in and we're waiting for it to be made up. It takes a few days for the pharmacy to get the special powder form to compound the drug so it can be administered into the J-tube. Hopefully this gets Jax back on track and we can continue to stay on the up-and-up.

Thursday, July 30, 2009

Pukey again :(

Jaxon hasn't been doing the best the past few days. His vomiting has started up overnight a little bit and he definitely falls apart by 4:30 am. He's been vomiting almost every hour or two during the day...poor little monkey. His stool has gone from black to green with use of the Miralax every day, but it smells awful. These two symptoms together are telling us he's in need of an antibiotic again for a bacterial infection in his GI tract. We were really hoping he'd be on natural supplements before his next flare up, but it's becoming apparent that it didn't work out that way. The doctors did tell us he'd have these issues every few months with his disease (his nerves don't know how to clear out bacteria like the rest of us can), and it's been 9 wks since the last one. I guess we're not shocked since he was having black stool which means fermented bacteria. I'm just glad that we now know the signs to intervene before it gets out of hand like it has in the past resulting in hospital stays and IV feeds. I think the doc was hoping the laxative would get everything out before an infection set in...but I don't think we beat it.
I'll be calling the GI department tomorrow to let them know the news and see if they want him on another round of antibiotics.
The chiropractor said his alignment was off terribly, so he has to go back to 2x/week again for awhile. I wonder if the heaving (which always makes him sleep with his neck/head back in defense to the vomiting) is causing his alignment to be thrown off, which always hinders his sleep. He started his head tilt a little bit again too...this all happens whenever the vomiting starts up.
The boys have their 1 year check up tomorrow afternoon as well. I have no idea which immunizations the boys will get, but I pray there is no oral one...that will just NOT work for Jax. Nana and Papa Letts thinks that Jax weighs more than Brady, so we'll find out tomorrow!
I'll let you all know what the GI doc says and how the check up goes with all the new height/weight stats of the boys.

Monday, July 27, 2009

Manitowoc or bust

The boys had their first weekend road trip home. They did really well. They loved being at Nana and Papa Letts' house and slept like rock stars there. The weather could've been better, so we didn't get to be at the softball fields very much at all.
When we got home Sunday, I found Jaxon's urine labs in the mail - FINALLY! So we have an appointment with the holistic doctor next Tuesday evening. I can't read/translate the urine labs very well, but it looks like Jax has "off levels" on several different readings, so the meeting with the doctor next week should be interesting.

The boys enjoying Shannon and Jen at the Kenny's tournament on Saturday.

Boys hanging out before dad's game and all the rain on Sunday.

Jaxon doing what he loves to do...taking Brady's paci and taunting him with it.

Jaxon playing poker and having lunch with the softball team on Saturday in between games.

Wednesday, July 22, 2009

Follow up and the best picture ever taken

Jaxon's appointments went well today. The GI specialist is amazed at how well he is doing. We are supposed to just continue with what we're doing. I'm hoping to hear from the holistic medical facility soon to see their suggestions.
We are looking to get Jaxon's GJ-tube switched to a button. There is a request into radiology, so hopefully that will happen soon. Apparently it may "leak" on Jaxon, but we'll give it a try anyway. Right now there is a bit of granulation tissue around his stoma site, but also some dark pink/red tissue that is always wet. The tube-specialist took a look at it and I think it's called metaplasia - where it's actual stomach/bowel tissue coming out. Um...ewww. There's nothing I can do except watch it. If it gets worse, they'll discuss surgery to fix it. So let's hope it doesn't get worse. I'll snap a photo of it for a future post.
Jaxon was also formally diagnosed with "constipation", which is very common for his disease. His stool (when it happens) is almost black with a weird/gross smell. The doctor said it's fermented bacteria, so we need to get it out. So Jax will be on Miralax everyday for the next month. Easy enough, and a simple fix compared other things in his life! So we'll be giving that a try. 
Acupuncture went well, and we'll be continuing with that before the next GI followup at the end of August. Please keep your fingers crossed that Jaxon remains on this upward slope and continues to be happy and crazy at home bullying his brother!

Brady being silly
Jaxon chillin' with Yanni
The best picture ever captured in all of time. 
Jaxon stole Brady's pacifier and taunted him until he was in an absolute meltdown.

Tuesday, July 21, 2009

Keep on, keeping on...

Not much to report, but wanted to check in with you all. Jaxon has acupuncture and a GI appointment at the hospital in the morning (Wednesday morning) so I'm sure I'll have a good update from there. I have my notebook all set to discuss about 20 things I've researched with the GI doctor - I'm sure he loves that!
I have to share what the GI doc wrote in the boy's birthday cards (yes, our specialist/dietitian/nurse sent the boys bday cards - crazy huh?) the specialist wrote in Jax's, "Hey Action Jaxon, get your act together" and "Hey big boy, leave your brother's tube alone!"...if you ever saw Dr. B Li, this would make you smile :)

Jax has been having his episodes about 6x/day which is good for him. We count his repeated vomiting for the first hour of the morning as one episode...he needs to clear his early morning congestion, so he vomits about 10+ times for the first two hours. (This is why we dread any colds he may get...all night vomiting and dehydration follows.) He's been sleeping really nicely through the night. Brady has been doing great through the night except for last night he had a nasty teething screaming fit until Jay gave him some Tylenol and apparently put him in the swing! I didn't realize this until 6:30am when he got up. Whatever works...but that swing won't hold Big B too much longer!

Friday, July 17, 2009

Food is not the issue

We had a phone meeting with a holistic food counselor to go over Jaxon's blood results/food allergy document. Turns out Jaxon doesn't really have any issues with food in relation to an allergy or sensitivity. The only things that came up were some seafood things, which anyone who knows me, knows I don't eat it/prepare it/serve no problem with that! These results are great for if/when we ever get him to eat orally! The counselor confirmed that he is currently on the best diet that he could be on given his situation. So this was basically a second opinion of confirmation to stick with our current dietitian at Children's Hospital.

We are still waiting for his urine labs to come back so we can have our meeting with the holistic medical doctor (who swears he can cure him). I'll be calling again first thing Monday morning inquiring about the labs. Otherwise Jax has been doing pretty good. He had one bad night that gave us a bit of a scare that he was starting a relapse, but he bounced back and was fine the next night. We think it MAY have been teething since he popped out 2 new teeth in one day. He has a bit of a runny nose which may be from the teething or something he picked up from all the passing around at the birthday party. His other front tooth broke through his gums and it was bleeding awful. It seems as if pain (and congestion) may trigger his GI issues because he was up non-stop getting sick. I gave him Tylenol before bed last night and once again around 4am and he did well until almost 6am. So we're happy to not be calling the hospital for that!

Brady is getting a bit more daring, but hasn't done anything too new...he just loves to move across that floor as fast as he can like the stealth cat that he is :) He's also not going down as easy for bed, but once down, he consistently sleeps 11 hours. Oh and the cuddles...Brady's cuddles have gotten better and longer - he just melts me. We've been really enjoying a lot of time outside every afternoon now with the gates set up. I find the boys starring up into the sky watching cotton float from the tree through the air...those are the moments I'm trying to soak up and really appreciate and love.

Tuesday, July 14, 2009

Happy 1st Birthday!

Happy Birthday boys. And Happy Birthday to Grandpa too! Click below to watch my little miracles grow through the year:

Monday, July 13, 2009

1st Birthday Party

The boys had their first birthday party yesterday. The weather was beautiful, the boys were angels and they got to be with a lot of friends and family that they don't usually (or ever) get to see. It was a good day.
They will officially be ONE tomorrow. They've already started to be big boys with cutting out one nap (2 beautiful long ones instead of 3 short ones) and they're taking their naps up in their rooms. Brady still uses the swing, but let's remember how long it took him to let go of the swaddle! All in do time...

Miss Marley turned 8 a few days ago - Happy Birthday!
Jax was not interested in touching the cupcake too much. 

Birthday cupcake tower
Outdoor playpen for all the kids (and big kids too - ahem Auntie Sidney!)
Uncle Adam introducing a new teething toy.
The birthday boys!

The fab-four
Jenn, Lisa, Jax, Julie, Claire, Krista, Brady and me!
Party is done, but there is still time to play right before bedtime.

Friday, July 10, 2009

A few test results

Our week has been pretty uneventful (which isn't a bad thing in this house). Brady has become pretty mobile, which makes things a little more challenging for me! We've been busy preparing for the boy's birthday party for this weekend, and if we stick to the plan, it should be just fine.

I've been emailing back-and-forth with our GI doctor's nurse. She said that Jaxon's VIP number came back as 38.2. She said the normal range is 20-42. Soooo I assume that means a pancreatic tumor is not a possibility? And I assume we'd be called in if it were, but I will be discussing it further at the next appointment. I had attached the latest clinical study for the Motility specialist to read and requested the next round of tests to be considered. Since the clinic study said that only 100 children a year are diagnosed with this disease (and the mortality rate is strong at 30%) I feel that we should do further testing to see which parts (if there are more) of his GI track are all affected here.

The motility specialist told the nurse he read the report and agrees that it's a very rare disease and we should plan to do 2 more tests in early 2010. One to re-do the one he had to see if things have improved or not, and one that tests the large intestines/colon.
I have an entire list of things to go over with the doctor at our next appt (7/22).

We've received the results for 2 of the 3 labs done for the holistic medical facility. I can't really interpret the results of the stool labs (bacteria etc) but the blood work for food allergies seems pretty good! Looks like he may have some allergies to some fish, but everything else looked good. We have a phone appointment scheduled next week with the holistic food counselor to review the study and hear what she has to say. We're waiting for the urine labs to come back to have the big meeting with the doctor to get their suggestions. So I will keep you all posted!
So far Jaxon is doing well. We have his pump rate up to 36 mls/hr, so he can be off the pump for over 3 hrs at once each day. This will be nice for his therapy and physical development (and to mention his birthday party). We just hope he continues on the path he's been on this past month!

Ahhh yes...Big B at his finest.
The boys were super happy around 6:30am.
This would be my solution to Brady taking off while I'm tending to Jax!

Monday, July 6, 2009

Fourth of July Wknd

We had a nice 4th of July weekend. The boys were exceptionally good on Friday's road trip. Jason had off of work, so we took a trek to IKEA. Since Hwy 94 is a mess, we took all side roads there. Brady snoozed most of the way and Jax talked to us most of the way. They were happy little men thru lunch at a restaurant, shopping at IKEA and the car ride home. Can't hate that, can you!?
We went to Dennis and Rachel's house for a pool day and cook out. The weather didn't get as nice as it was supposed to be, but Brady still enjoyed the pool for awhile. Jax was not feeling the best at all, so we thought we'd see how he was the next day, and try again. 
We had pictures taken on Sunday morning. We actually managed to get a family shot, although it was the last shot taken and the boys were squirming everywhere. So we were basically restraining them in the picture while Jason and I were sweating!
The rest of the day went great. Jaxon felt better and even he enjoyed the pool! He stayed in his baby floaty for 1.5hrs and loved it. We figured he was turning into a shriveled raisin, and it was time for him to go back on his pump, so we forced him to come out - well now we know the boys love a pool!

Jason putting our new toy organizer together Friday night.

The boys enjoying their little sun tent - best $14.99 ever spent. (,21255.html)
Uncle D and Brady playing in the water.
Jason trying to teach Brady how to throw the ball back.
Auntie Rachel and Jax in the pool.
1 year pics!

Wednesday, July 1, 2009

Appointment updates

Jaxon had his monthly Feeding clinic and GI clinic follow-ups yesterday (always a long day). Let's start off with his feeding clinic update:
The specialist is over the moon about Jaxon and his smile :) She observed me working with Jax and doing our spoon/water routine together. Everything went well and Jax loves his spoon. Our next step will be taking actual step 1 baby applesauce and mixing just a bit into water to change the texture. I have to stick to a taste he's used to and just work on texture for the next 6 weeks. We put a dab of actual sauce on his lips to lick and it made him sick. So we are going to go very slow with continuing the water/juice drops and upping the texture. I will work with him 2-3x/day for no more than 5 mins when he's in the high chair at the same time as Brady. So nothing too much new there, and it's a slow progression, but at least it is moving forward.

GI clinic:
Doc is extremely happy with Jaxon. He walked into the room with a student doctor and said his classic line, "Hey it's my buddy Action-Jaxon!" which always makes Jax smile and now clap in excitement. The doctor turned to the student and said, "see...I told you". I asked what he was talking about and he said that Jax is one of those patients who's smile and happiness camouflages how sick he is. I don't know why, but that made me feel sad.

Anyway, we reviewed everything and the doctor is very pleased that he sleeps pretty good at night. I could tell the doc is trying to figure out what one thing or mix of things are keeping him doing so well at the moment. He loves that he's not on any motility drugs and most everything we do is natural (chiropractor, acupuncture, probiotics). But does think the antibiotic round certainly was needed and helped. We can't deny he didn't improve after it, but we'd like to find another route for him so he's not on a harsh antibiotic every 2 months. I didn't tell him about the holistic medical facility yet since I'm waiting for that doctor's actual recommendation. But I did tell him about the probiotic and he's cool with that.

We started to get into a discussion about still searching for a reason for this senseless disease, and the doc said the Mitochondrial Disease results came back normal, but he still felt that Jax may have a high functioning version of it. He said he's done a lot of research in that field, and thinks Jax has a high chance of having it. I found this part so interesting...his suggestion was natural supplements! He gave me a list of three supplements to research and take if my "mom-instinct" says to go for it.

He said that he's not trained in natural supplements nor can he "prescribe" them, but he thinks they do work for some people. He said that we should exhaust any and all possibilities that can pose no harm. How great! Clearly he won't be offended when I contact him with the holistic facilities suggestions.

Jaxon had blood work drawn to test his thyroid and check his VIP levels. I think we'll get the thyroid levels back soon, but the VIP has to be sent out for special testing. I told the lab tech to have one come back positive (because it's curable and that would be the best news ever) and to make one negative. She smiled and said I know exactly which one you want for both, and I'll put my prayer sweet was that? The doctor told me that there's a very low chance for either of these tests to be positive, but since Jax likes to beat odds, he's willing to check "just in case". Clearly the thyroid test is the treatable issue and the VIP is not since that would mean pancreatic cancer. The doc said that while both of these things can cause CIPO, the thyroid was checked at birth, and VIP usually has non-stop diarrhea, and both are rare on top of this already rare disease he has, but why leave stones unturned right?

So to wrap this up, we are going to slowly turn up Jaxon's pump rate (1ml/hr every 3 days) to find his threshold of what he can handle. The higher the pump rate of food going in, the longer he can take breaks off it in the middle of the day. I turned it up last night to 33mls/hr and I'm hoping to get to 37mls/hr so he can have 4 full hours off the pump at some point. That would be heaven! The doctor is also researching GJ Mickey buttons that would work for his next tube-change. I pray we can find a "button" that will work for him. Oh, and Jaxon's weight was just over 19lbs, so he's gaining fine which is always the biggest concern now to make sure his intestines are functioning.

And I don't want to leave Brady out - he is of course pulling his body all over our floors! I'm trying to get him up on his knees and he seems interested in pulling up on things, but still not close to even really attempting it. But I really can't turn my back for a second anymore since he can get across the room in a blink!

The boys practicing for their 1 year photos coming up this weekend.