Monday, August 31, 2009

Manic Monday

Jaxon having physical and occupational therapy with Miss Kris and Miss Karen. Special day to have both together to work out a plan.
Brady loves to play with the toys they bring!
I love the total "gummy" smile from Brady...where are your teeth?!
Sweet Jax.
Big boy Brady going after his paci, and looky loo at his brother practicing to get out of a sit position, which is great except he's going after his tubes - sassy!
(and no...that's not a liquor bottle!! Ha ha, that's hand sanitizer!)
Jax modeling his winter pj's...brrr it got cold!

Friday, August 28, 2009

My guys

Brady standing and even attempting to move while standing.
Time to keep shoes on him more often!
(Brady is also doing his famous nose-squinting face that Nana Letts says his cousins Aidan and Anesah use to do too!)
Daddy is home from a long business trip - yay!
The only news I have is that Jax now has SIX teeth on the bottom and working on FOUR on the top - 10 teeth! We're trying our best to get used to his new tube/attachments. We're working on his natural supplements and ran into a little snag last night with one of the supplements not working with his tube (we can't get it to pass thru), but we'll work on a solution! We're on supplement #3/13 and the next 5 are ordered.
Brady is just into everything like a healthy 1 yr old should be! We are baby proofing this weekend with gates on the stairs and a trip to the store!

Tuesday, August 25, 2009

Jaxon's new gear!

Jaxon and I had a long day at the hospital today. He had his GI follow-up, which proved a great weight gain (20lbs 10oz), so his formula recipe will remain the same for now. We had lab work done to see if we could stop the iron supplement, and the GI doc also had some standard testing done to check other things out (white blood cell count etc).
Jax was able to get his GJ low profile MIC Key button today! It was an awful 10 minutes of a VERY upset little boy, but happy once it was over. Between that and the blood draw, I myself was exhausted after I got him home for a nap! I hate watching him go through these things, and he just doesn't understand so it's so heart breaking.
On another note, the GI doc said he has "an open mind" when I presented him the supplement list and independent test results. He took copies of everything and said he'll read everything more intently after his clinic. It seemed like he thought it may "help" Jax, but I don't think he's sold that it will "cure" him. He did say the statement, "his nerves are dead"...but agreed that our only other option is to continue antibiotic rounds when we see Jax relapsing and hope he can stay off TPN (IV feeds). He definitely wants to keep Jax flu-free this upcoming season since it sounds like it's going to be a bad season for it. We all know that a simple cold can send Jaxon into a vomiting mess...which leads to hospitalizations etc. We've been very lucky with the boy's health in this respect (KNOCK ON WOOD)!

Here is the old and new gear:

Jaxon's tube last night after bath time.
(off the pump)
Good bye to this!!
(when he's off the pump)
New button!
(off the pump)

The new button with the G and J extensions connected about to be hooked up to the pump. 
I hook an extension up to the G port to just vent into a diaper while he sleeps for tummy comfort.

Monday, August 24, 2009

Weekend

We had a busy weekend, but the boys seems to enjoy it that way. We did some shopping for the boys at the outlet mall with their birthday gift cards, and went to Jason's big championship softball game (which they won). Auntie Rachel came by with the pugs, which the boys love!
We all went to the zoo for their big "A la carte" celebration on Sunday.
Back to reality today with a visit to the chiropractor and physical therapy for Jaxon. Tomorrow is his big day at the hospital for acupuncture, a GI check up and his big tube-change out to a low profile Mic-Key button. I'll let you all know how it goes with pictures of his new gear!
Not much else to report except for the fact that Brady is having a development explosion. He loves to stand everywhere now!

Auntie Rachel with the boys and girls.
Jax and mama at the zoo.
The boys during an ice cream break.
Auntie Shannon sharing her ice cream with Brady!
The champions!

Thursday, August 20, 2009

He did it!

Jaxon rolled onto his belly to play! It was only for a moment and he only did it twice, but it is such a HUGE step for this little guy. I had to run errands with him this afternoon, so he was on his pump all day, thus allowing him to be off the pump for 3 straight hours this evening. He went after a toy car and suddenly just flipped to his belly! I ran for the camera and he gave me one more roll to the belly for everyone to see. This is his first attempt at being mobile...well done Jaxie!
The boys got their first tooth brushes today! Brady LOVES having his teeth brushed, while Jax had to be wrestled down a little bit!

Our little superstar on his belly!
Brady pushing for more baby-proofing in the house!

Look at those chompers on Jax!
Jax with his toothbrush after bath time!
Brady loving his toothbrush!
My guys.
(yes...including Jason rolling around in the background!)

Wednesday, August 19, 2009

Change is good

Jaxon has officially started his first supplement tonight - finally! We'll be having a consult on Friday with a surgeon about his tube-site. They want to look at it and decide if anything should be done about the stomach lining that is coming out. I'm hoping they just leave it or find a way to stitch it in a little bit. The nurse told me that they usually just leave it or they have to make a complete new hole on another part of the stomach. NO THANK YOU! No more holes in my son please! So we'll see what they say. He's due to have a tube-change on Tuesday, so I'm hoping nothing gets in the way of that needing to happen. 
In other news, his other two top teeth are starting to poke through. That's number 7&8 for him. Brady is cutting the other two bottom teeth, so that would be 4 teeth total all on the bottom. He's getting better at pulling up to his knees and working on standing a lot more now.
Jaxon has suddenly made leaps and bounds with his spoon-therapy with water. He's taking "bites of water" willingly and happily suddenly. I've increased his therapy to 3x/day and am thickening his water with stage 1 apple sauce. We'll continue on this path until his next feeding clinic appointment, which I'll be making for about 4 wks from now. He needs to master thickened water in order to have the next step in the clinic, so that timing should work well. I've dropped his Zofran medication and plan to have his hemoglobin checked at the specialist appointment Tuesday in hopes to drop that which would help with his constipation/bacteria issues.
Brady has not been in his swing since Monday. Yes ladies and gentlemen, my 13 month old son was still taking all naps in his swing during the day. I officially let him cry out a few naps in the crib, and I can say that was way harder on me than him I'm sure. He's doing much better, but the naps are still not nearly as long as they were when he was in the swing. I'm sure it will continue to get better. I've decided that I finally trust him with crib bumpers, so I put them on so his pacifier doesn't fall out which seems to help a bit.
Lots of changes here every few days!

Monday, August 17, 2009

We're BACK!

I'm sorry the blog has not been updated for over a week! Jason and I went to Key West with friends for my 30th birthday for a couple of days. We met up with another couple who I talk to online who have a set of twin boys as well.
Nana Letts and Miss Denise watched Jax and Brady and we can't thank them enough! They did a FANTASTIC job caring for them. I missed the boys SO much that I was looking at their pictures on my phone every chance I could.
The boys are doing well. We're waiting for Jaxon's first few natural supplements to come in so we can start administering them. The first 3 supplements will be:
Artichoke Extract (thins the bile in the gallbladder to help removed toxins from the body)
Silymarin (liver support)
Digest Sprinkles (helps digest proteins, carbs and fats)

We'll start with one supplement and add an additional one every 4-5 days. Jax has his next GI followup w/ acupuncture next Tuesday, so I'll be going over all of this with our GI doctor at Children's Hospital as well. Jax is supposed to get his tube changed out to a Mic Key button that day as well. The stomach lining that is coming out of his stoma is supposed to be sewn back in this Friday, but I'm waiting for a call back to see if it should all be done at once next Tuesday. Nana Letts was able to review all of Jaxon's test results from the independent labs that we had done, and after witnessing his disease for a few days straight, she also agrees that these supplements have to help normalize his system. His early morning vomiting is so violent...something has to help him!

Here are a few pics from our trip and of the boys:


Jason and I with the Willards from South Carolina
(Tamlyn and Scott, parents to twins: Cooper and Colton!)
Uncle Craig and Auntie Shannon with us.
The boys enjoying a "Drag-Show"
(Scott, Craig, Dennis and Jason)
Auntie Shannon and Auntie Rachel!
The moms...

Jaxon doing what he does best...stealing Brady's paci and generally beating on him.
Jason blowing on Brady's toes upside down...the boys didn't miss a beat when we came home!

Thursday, August 6, 2009

Pulling up!

Brady has officially army crawled over to the bathtub and pulled himself up to a stand all by himself! He loves bathtime, but has to wait his turn since the boys can't bathe together with Jaxon's tube. Jax has to be bathed first since it takes so much longer to dress him, care for his tube and get him hooked up to the pump for the night. So Brady has usually played with me in the bathroom while Jax has his turn, but lately Brady is ready to climb in himself! I've been working with him learning how to push up off his knees and onto his feet, but all I've been creating is a baby trying to climb on ME.
Jaxon is starting to show interest in rolling onto his belly (he did it once) but of course only on his left side. He has a very hard time with his right side, which is the side affected by his torticollis. He'll be seeing the chiropractor for the 3rd time this week tomorrow. We're trying to get his neck re-aligned after all the heaving/vomiting he was doing in the past few days. He's getting better over night, but still working on daytime vomiting. The antibiotic is working though, we can definitely tell.

Brady's first unassisted pull to a stand!
(You're welcome Big B)
Jax is telling Brady to back off because Brady wanted in!
Jax claps when you pour water on him!
Ahhh finally it's Brady's turn!

Tuesday, August 4, 2009

Holistic Medical Doctor - meeting

We had a phone meeting with the holistic doctor to review Jaxon's test results. Besides the boys deciding that that was THE best time to scream, the call was overwhelming, yet very hopeful. Jaxon's results definitely indicate GI absorption and bacterial problems. He is also showing issues with cellular energy which is what our GI specialist at Children's was suspecting (a high functioning form of Mitochondrial disease). So we'll be receiving the supplement list that the doctor recommends we begin giving Jax (and it sounded like a LOT). We'll be doing some further testing down the road (Detox DNA and Amino Acids testing), but they don't want to overwhelm us right now, so we're going to begin the first round of supplements.

The doctor was going on-and-on and I was getting lost. He said he's sending a transcript of the entire phone conversation along with a full list of supplements to be ordered. I basically asked him in the end if these supplements would make Jaxon's body work without more rounds of antibiotics in the future. He said, "yes".  Apparently the antibiotics work for a short time of relief for him, but add to the problems with throwing off his levels even more. I asked if these supplements are supposed to make his body work so that he doesn't vomit anymore...he said, "yes". He then went on to say that all these tests prove that his body is NOT working and these supplements will help his body cure himself. We're supposed to see changes in Jaxon in the near future.

Consider this a virtual glass raising and a toast :::: Here's to the doc's optimistic and positive attitude to curing Jaxon:::

On the mend

The antibiotic seems to be helping Jax. He slept 11 straight hours last night and the vomiting is starting to come down a bit. We'll see what the holistic medical doc says tonight during our phone-meeting.
Jaxon's stomach lining-tissue is coming out of his stoma site pretty badly now. I called the GI office and they scheduled a day-surgery appointment for him on Aug.21 to sew the tissue back inside (where it belongs!). The nurse said he can't feel it and to keep it covered with gauze, so at least we know. I'm still bringing him to the chiropractor twice a week until we get his neck alignment to hold...which is probably adding to him sleeping better again.
Brady is now really wanting to try and pull up on things...especially ME. His new thing is to cry while army crawling to me and trying to pull up...all while crying until I help him up and he looks all proud while in my arms. I think SOMEBODY is starting to get a bit attached to the mama :)


Jaxon starting to feel better and smile again.

Sunday, August 2, 2009

Weekend update

The boys enjoyed their weekend. Nana Jayne came and gave haircuts with Great Grandma Carol in tow to play with the boys! 
Brady is starting to try and pull up on things. The best attempts are still at the bathtub to look over when Jax is in it. He got up to his knees on the coffee table but I couldn't grab the camera in time to snap a photo! Remember Brady refuses to crawl on his knees (army crawls/swims everywhere), so for him to get up to his knees and arms pulling up is a big step for him. I'm going to work as hard as possible with him on this through the week, as well as showing Jax how to get out of a sitting position down to his knees. More to come on all that I'm sure!

The boys loved being at Auntie Rachel's pool today. As usual, they sat in it until we HAD to take them out because it was nap time aaaaaand their skin was super wrinkly! We learned quickly that Brady will go face first in the water at every chance, so Rachel put a baby life jacket on him that didn't allow him to lean forward...I have some great pictures that follow for that.
In medical news (because there always is some, right?!) we're SO glad we started Jax up on the next round of antibiotics since his vomiting certainly has gotten worse. It's pretty violent and he's bringing up a lot of bile. I'm hoping to see him starting to turn around on the 4th day or so on the meds like last time hopefully.

Jax just lounging in the pool.

Brady cheering after every bite of his snack.

The boys loving fridge-fun.

Brady getting a ride from Daddy.

Brady with his happy face after having to have the life vest on!
(He kept trying to go head first out of this floaty)