Tuesday, December 29, 2009

GI Follow up

The GI appointment went as expected for the most part. Jax started having a breakdown when we went into the room where he gets measured and weighed (he weighs 22lbs 11oz). I put him in a button up play romper (that we use for pj's since they make all pj's zipper for this size and up) which helped to get him undressed and re-dressed quickly and then allowed the doctor to examine his stomach/tubes/gut without taking a shirt off, so I'm starting to learn those little tricks :) Jax feels so comfortable with this doctor so that was really nice to not have any more breakdowns in the other room, EXCEPT getting labs...wowzer...my poor BABY! 

So the doctor said his growth chart is really good (they monitor every little ounce to make sure his intestines are absorbing properly and he can continue to remain off TPN) and said his height-to-weight ratio is a perfect 50% (thus meaning, as we already knew, that Brady is SKINNY) and his weight is 25% for his age - AWESOME! 

The doctor had a really good conversation with us about how Jax vomits MOST of his episodes the first half of the day, and how sick he is waking up each morning to such violent vomiting. While doing some research on my own this past month, I read up on "Cyclic Vomiting Syndrome" which is a specialty of Jax's doctor. Jax displays almost all characteristics of this syndrome, except that his symptoms are chronic and daily.
(Since I'm always trying to discount Jax having a life-long/threatening disease,) I asked the doctor if I were to vomit everyday and DURING the motility study that Jax had, wouldn't my results also show discoordinated nerve function = Pseudo Obstruction....he actually said YES. I know I'm always reaching at straws to try and make this disease "go away", but I can't help but wonder (hope) that maybe this is something he'll grow out of, and maybe not cause him to be on a tube the rest of his life, or end up on a central line, or shorten his life....I have to keep trying right? But the doctor did say that since he has a chronic, everyday problem, it is more than likely Pseudo Obstruction.

So anyway...the doctor is very happy with Jax and said he would've never thought in a million years he would not have seen a hospital stay since May and agreed that his supplements MAY in fact be keeping his motility going and keeping him from relapses. Like I've said, he may not be cured, but he has "life" now. Jax's second set of labs have finally been mailed back to us, so we're anxiously waiting for them in the mail. This is the Detox DNA labs that the alternative doctor has ordered. We'll hopefully be having a phone conference to see if this doctor can see any missing puzzle pieces and see what other natural supplements may be recommended.

The GI specialist decided that since Jax is still gaining at a good rate, and his height/weight ratio is perfect, that he doesn't want to increase his calories, but since he's actually at 80% of the calories they would normally prescribe, he had his urine tested today (OOOOH gluing a urine bag on a toddler is NOT FUN) to check to make sure he has enough fluid in his system. Since we are shorting his system 20%, we want to make sure his organ function is okay - so I'm glad we are having that checked. The doctor also had his blood taken to check his Carnatine levels. This is something the alternative doc was going to check (but hey, we prefer it free thru our specialist) - something about this level would affect his cellular level (mito disease)...not sure what it all means, but I say go for it! I love having the hope of finding missing pieces...

So all-in-all, it was a positive follow-up, with the next one scheduled 10 wks from now. I'm very anxious to hear what the alternative doctor has to say hopefully next week.
Oh yeah, and the GI doctor didn't like the look of Jax's prolapse coming out of his stoma site (the stomach lining coming out of the tube site). He said if it stays the way it is, we can wait until our next follow-up, but if it gets worse, we'll have to make an appointment to see the surgeon...which means Jax will have to have a surgery with a new hole put into him and let this one heal up....Ugh, we don't want that! I don't want anymore surgery or holes put into him :( So if you could all cross your fingers for this kiddo for that, we'd appreciate it!

Sunday, December 27, 2009

Happy Holidays

Wow, traveling with these boys for the holidays was exhausting! We had so much family to see in such a compact amount of time, but we did it! The hardest part is still finding a way to let the boys have a nap, and deal with Jax's tube-changes and medication/supplement administering. It all worked out, and the boys LOVED seeing all the family, but we were ready to come home by Saturday. 
Jaxon didn't have any episodes in a crowded room to scare anyone. He actually had decent days considering he had less sleep and a lot of stimulation. Brady ran a fever the first night we got home (Wednesday night) and then by the time we were getting ready to leave on Saturday morning from his other set of grandparent's, he was SUPER crabby. We figured he just needed to be home. Well he had a rough day again today, so hopefully that gets figured out soon.
After coming home and looking through all the pictures we took, I was really disappointed to see that the pictures had really dropped off after Christmas Eve. I'm so bummed that we didn't get a picture of the boys with their cousin's Aidan and Anesah - DARN IT! 

Jaxon has a follow-up with the GI specialist at Children's Hospital on Tuesday, so I'll keep you all updated with that.
Well, enjoy the shots I was able to get, and Happy Holidays!

Jason and Brady relaxing on the couch and watching a Yo Gabba Gabba DVD on 
Christmas Eve morning - the calm before the holiday craze we fly through the next two days!
Great Grandpa Wally and Brady on Christmas Eve.
Uncle Adam and Jax hanging out Christmas Eve.
Amber and Josh lovin' up the boys Christmas Eve.
No matter how many people are around to play with the boys, they still fight over me!
Of course Jax could be found in the arms of his cute 2nd cousin - Amanda.
Nana Jayne with the boys on Christmas morning.
Cousin Marley with the boys at Nana Jayne and Bumpa's house Christmas morning.
Papa Letts playing with Brady late Christmas morning at Grandpa K's house.
The boys had to be wrestled to the ground in order to keep them away from the stairs. All they wanted to do Christmas afternoon at the Lettenbergers, was to climb the stairs! 
(this was the 4th event out of 5 in a day and a half)
We had to give in!
Cousin Aidan and the boys opening a present at Nana and Papa Letts house Christmas night.
(I see Aidan's hat and arm! That's all I got - what the heck?! Christa and Clint - did you get any shots? I'm mad I didn't get you guys or Nana!!!) They were all there, I promise :)

Monday, December 21, 2009

Pre-holiday celebrations

The boys had Rachel, Dennis, Craig and Shannon visit yesterday. Jason was on pins and needles watching the Packers play the Steelers. It was a nice visit, and the boys loved all the attention.

In boy news, Brady has started a little stranger danger these past few weeks, but nothing major. He does a ton of baby-talk, but nothing coherent yet! Jaxon has good days and bad days, but he's hanging in there. He's doing really well in the evenings, but the mornings can still be tough. Overall, he's still defying the odds and we keep the faith.

A big concern for him right now is the prolapse (stomach lining/tissue) that is coming out of his stoma (hole that his tube is in) and it's really starting to protrude a lot now. I tried pushing it in as much as I could yesterday (yes...really) and now today he has blood venting out of his stomach...this poor kiddo...I'm hoping it's from me pushing on the stoma site. I REALLY hope he doesn't have to have surgery to have another hole punctured into his body to let this one heal up. Jax has his next GI follow up on Dec. 29, so they'll probably let us know if anything needs to be done.

We're just trying to tie up last minute holiday things and start packing for our trip home for the holidays! 

Rachel soaking up some snuggles from Brady
~Rachel and the boys opening their holiday gifts~
(The boys love tearing at the paper!)
What a fun toy - an entire drum full of noise makers - thanks Auntie!
Jax could not get enough of playing with Craig before bedtime~
(He slept well - thanks Craig!)
~Brady and Dennis playing airplane~
Jaxon's first time crawling up an entire flight of stairs! 
Look at that determined face!
(Every night these little peanuts crawl up the stairs 
in total excitement now!)
**Look how cute their monkey shirts are from The Garbers!

Friday, December 18, 2009

Family photo

This is our lovely scanned-in family photo that the church took of us. We like the family photo, but WOW, their prices are insane! Back to Kiddie Kandids for these boys next month for their 18 month photos, sorry expensive studio!

Wednesday, December 16, 2009

Christmas Party w/ a lot of pictures!

The boys had fun at their Christmas party this morning that was hosted by their physical and speech therapists. There were a lot of kids and activities, so tons of stimulation! Poor Jax didn't feel well for the first 20 minutes or so, but after a vomiting episode, he felt much better and had a lot of fun.
Jaxon has been doing really well with waking up later in the morning. I think about 75% of his episodes all happen in the morning. He does so well in the afternoon and evening. He's still averaging about 4 episodes a day now, although when he has an episode, it lasts a little longer than they used to. He will heave about 4-5 times, compared to 3, but the actual number of episodes has come down. We're keeping the hope alive!
Enjoy all these pictures!

The boys enjoying the presents that Auntie Sidney 
and her family sent them!
Brady liked the box the presents were mailed in!
(And apparently it's fun to chew on wrapping paper...)
The boys taking a tinsel bath at the party.
Brady cried on Santa and Jaxon didn't really care! Who knew...
The boys in the ball pit.
Swinging on the swing!
(Jax got sick, and felt much better after this picture)
Bouncing on the trampoline.


Opening their presents from Santa.
Brady thinks he should get two, and Jax none...so it begins...
Jaxon enjoying the song with his physical therapist Miss Kris.
Brady sat with me and had a blast. We tried to separate them in the group.
Brady with his speech therapist (Mr. Nick) making an ornament.
Mr. Nick gave the boys a ride through the halls on a sled 
- the office workers loved them!

**The Christmas shirts were sent to the boys from the Johnson triplets with wishes of good health this new year! Thank you Ben, Nate and Alex! (And their mama, Jen too!)

Tuesday, December 15, 2009

Quick note

I just wanted to say out loud that Jaxon woke up yesterday from his feeding pump alarm going off (it was out of food) instead of vomiting! He had a total of 3 episodes the entire day and then one when he was in bed for the night, he did great! Today he woke up after 6am sick with some heaves, but no actual episode until later in the morning (1 so far this morning...can you tell I'm counting??)

Like I said, I just wanted to say it out loud :) Carry on with your day ~

Sunday, December 13, 2009

Fast weekend

The boys are just cruisin' along. Brady is continuing to mimic us, and even WAVED - finally! The boys enjoyed a day with Nana Letts and Miss Denise while Jason and I attended his work holiday party out in Oconomowoc on Saturday.
The weekend went too fast! The holiday cards are mailed, most of the presents are purchased and wrapped and I've started our holiday cookies, which the boys are NOT allowed to help with until next year for obvious reasons :) I'm in full holiday swing!

New note to self: Do NOT clean the bathtub when you're alone with the boys. They throw everything in it, thus dissolving all my bath salts and soaps...neat.
I'll attach some pictures this week for sure. The boys have a Christmas party to attend on Wednesday morning hosted by their therapists with a Santa and everything, this should be fun! Who wants to bet the over-under on which kid, or both screams when sitting on Santa on Wednesday??

Thursday, December 10, 2009

Little tornados

The boys are cruising along. Brady is still copying us with many things EXCEPT walking and talking :)
Jax had his GJ-tube changed out at the hospital this morning. I'm glad that's over with for the next 3 months. He's really cruising around wearing his backpack now, which is pretty cute.
The boys pretty much use everyday to trash as many rooms as possible in the house now. As they get taller, the more and more things end up on the floor that they can reach! It's pretty much a complete tornado all over the place! I will have to start snapping photos of rooms they destroy for your entertainment.

Here's Brady NOT using his plate appropriately.
(But MUST hold onto a fork or spoon at all times)
This is REALLY not the appropriate use of a plate or fork.
Hmmm...a new way to contain the little men!
(Notice the lovely snow storm outside the window)

Monday, December 7, 2009

Pretend Play

Brady has been doing the CUTEST things this past week by copying us. He was pretending to put lotion on his body after his bath the other night. He took the closed lotion bottle and swirled his hand over the top of it and then rubbed all over his legs. He's been picking up Jax's plastic medicine syringes and pretending to mix up his medicine. He's been mixing and stirring bowls at every chance he has, and now HAS to hold onto a fork or spoon while eating. Since he can't always make contact well enough with the food, he'll touch the food with the utensil and then pretend to eat off of it. He also takes Jax's bib off and tries to put it back on him (he thinks Jax is magnetic like the fridge, so you can imagine how he tries to put it back on him). It's so neat to watch this development happen, and stinkin' cute too.

Jax has been getting better with his super mini backpack. He had an entire PT appointment this morning with it on, and his therapist was very impressed with him. She gave us the okay with it, and the chiropractor said he looked good as well (and liked the padding of the backpack), although he was a little out of alignment (but we're on top of that with weekly visits). His episodes have remained pretty steady with an average of 4-6. He has some great days, and then some normal days, so he's doing pretty well. I've also increased his pump rate now to 41 ml/hr, so we're able to give him a good break when he first gets up in the morning and then of course in the evening. He'll be having his tube replaced at the hospital on Wednesday (it has to be changed out every 3 months). While I'm excited to have it changed out and have it turned to the other side of his belly (to give his skin a break from the tape), I'm NOT looking forward to how upset he'll be to go through a change-out, poor kiddo.

The boys finally love books! They like the simple board books. 
St. Nick brought them a cute one with furry animals to feel. 
Library day tomorrow!
Brady mixing me up a pretend-cake!
Hi Handsome B!

**To answer "MFA Mama's" comment - Jax has a GJ - Mic Key button. It has to be changed out at the hospital under an X-Ray machine since it is threaded into the intestines - he is not fed into the stomach. They have to pin him down with weights and then set the X-Ray up over him. They deflate his balloon, remove the tube (it's long) and then insert the new one, and place it in the proper place via the small intestines. They then fill the new balloon to keep it in place. The GJ button can not be twirled around on his stomach (so it doesn't torque and wind up into his stomach) so that's why I want them to point it in the opposite direction that it is now since it must stay put once in place.

Friday, December 4, 2009

Jax is wearing his mini backpack!

During Jax's speech therapy this morning, his therapist (Mr. Nick) said that Jax looked more than ready to try his backpack again. This was after we had to chase him down multiple times to work with him, and the tugging at his tube-site was causing some stomach acid to leak from his stoma site.
Well his occupational therapist (Miss Karen) came in and she agreed with the speech therapist that we should try again. So during Jax's occupational therapy session we hooked him all up and we crawled around on the floor and we were able to get him to move. After 20 minutes or so, he was crawling around, standing, walking along furniture and crawling through his play tube. I kept the ice pack out, and it seems to work well for him. I'm so excited to give him (and us) this freedom.
I must add that the day we received the backpack from the medical supply company, we watched a DVD on how small children can have an active free life with this "gear". I remember watching the little boy on the DVD and scoffing that it would be awful having a small child needing to live off a tube connected to his back. This was when Jax was 4 months old and we believed his reflux would be over at any time. Well here we are...cheering Jax on for being able to wear it. How my views have changed... I no longer look at his feeding tube as the enemy, but a part of him that allows us to have him. I'm not saying I don't still cry myself to sleep once in awhile thinking about all of this, but there does come a point in your life when acceptance can lead to a little more happiness. I'm always working on this...
I just want Jax to know the world as normal as possible, and I know the day where he asks me "why" is approaching. I just hope I have an answer figured out for him by then.

How handsome and independent does this little stinker look???

Thursday, December 3, 2009

Lessons learned!

I learned a lesson in parenting today. Wrapping Christmas presents with one toddler in the room is annoying, yet doable. Doing it with two toddlers in the room = FAIL. Then if you put those two toddlers in their playpen while you wrap, they will stand at the gate, looking over at you and scream. Just thought I'd share that new experience ;)

The boys have speech therapy tomorrow, and Jax also has occupational therapy. Jason comes home tonight from a work trip, so the boys will be excited to see him when they wake up. I took them to the mall for an hour this morning, and we stopped and watched Santa talk to little kids. I thought about letting them sit on him for a photo opp, but I could see the look of uncertainty in Jax's eyes...so I ditched that idea quickly since I was alone!

Chasing after Jax with his backpack as he shimmies around the house is getting increasingly hard. He keeps crawling through his tunnel and doesn't realize the backpack can't go with him. Needless to say I've been cleaning up and changing his clothes multiple times a day with the tubes getting dislodged and making a mess! I can't wait for him to be able to wear his own little backpack to avoid all these issues. Well...I would love more for him to not need it at all, but you get my drift.
Here are some pics of the boys wrestling and playing in the tunnel:
**Notice the backpack stuck in the entrance (sigh...)