Update on episodes

Jaxon is still doing well. Here is how he's done the past two days so far:

Monday - Woke up vomiting at 5:30am. Jay turned off the pump and he slept until 7:30am (3 total episodes at that time). Then he had an episode during his PT session around 8:15am.

Tuesday - Slept until 7am without ANY episodes. Had an episode at 7:45am (after morning meds) and 12:15pm (after afternoon meds while in his crib to start nap).

**This means he went almost 24 hrs from Monday to Tuesday without a vomit. We'll see how he does from his last one now.

We'll see how he does the rest of the day, but he's been doing so great since Saturday. I'm starting to not think the trick was the well water - although we will be using it tomorrow night for a few days - but rather probably the antibiotic flush through his body is making him feel good. I REALLY hope this isn't short lived and it continues to be a sign he's taking the next step down in vomits!

If he keeps this up, we'll kick his feeding practice into high gear and hope for small meals during the day and using the feeding tube overnight to supplement his nutrition. That is a big dream, but one that is not out of reach, knowing full well it would take months of training. The doctor's have always said if his vomiting can come down substantially, they'd allow him to try and feed orally (thus him not losing all his food/nutrition and failing to thrive all over again).

I don't want to jump ahead of myself, or get my hopes up, but it's so hard not to...

Magic is supposed to happen around the holidays, right?

Social little bees

The boys traveled north for Grandpa K's birthday dinner. We were able to visit with Nana and Papa Letts and have a play date with Layla on Sunday morning (Sidney and Scott's daughter). The boys loved all the people!

Jaxon had an amazing Saturday night and Sunday morning with his vomiting. He never woke up vomiting on Sunday morning. He only had one episode in the afternoon in the car ride home, but after MUCH giggling, so that is AMAZING! He's either having a very good day, his system is loving the antibiotic flush or the only other thing I could think of that was done differently was the use of well water at Nana and Papa's house to make his formula. So we'll see how he does, but what a wonderful way to wake up!

Enjoy the pictures ~

Jax with Great Uncle Rick

The boys in the front window at Nana and Papa's house.

At the Garber house to play with Layla!

The boys making dinner for their Queen!

Jax has a new BFF named SCOTT!

Sidney is right...B looks like he's up to trouble :)

Apparently Jax was the social butterfly this weekend...

(charming up to Layla!)

The kids went grocery shopping.

~ Jax and Scott in a giggle standoff ~

**We've come a long way from our dance-offs huh Scott??**

Speech Therapy

The boys had their speech therapy evaluation this morning. They both qualify and will be receiving this every other week to start. So hopefully this will help to get things moving in this department! I was shocked at how well Jax did being that the therapist is male. He worked with Brady first so Jax felt comfortable with him being "around" before he worked with Jax. They both actually cried when he left, so they definitely like him! This is the same speech therapist Jax used to see as a small infant for trying to get him to feed from the bottle when he first came home from the hospital...which obviously was cut off from the doctor's realizing he needed to be tube-fed long term at that point. I don't see how the boy's would remember him from that long ago, but nonetheless, I'm happy they're very comfortable with him!

The boys are still moving along on their antibiotics (Brady's sinus infection, Jaxon's ear infections). Jax's vomiting is coming down. He slept straight until 4am this morning (in comparison to being up every 30 minutes the night before). Jay and I each got up 3 times until he finally settled down with having the pump turned off, and he then slept until 7am. So it's nice to see him get some sleep!

The antibiotics are causing Jax to blow out his diapers every 1-2 hrs, so that's a lot of fun! I'm just glad he's stayed out of the hospital and is on the mend!

Infections all around!

We brought Brady to the doctor last night for his lingering cough from a cold almost 3 weeks ago, and sure enough, he has a sinus infection. So Brady is on his first round of antibiotics now. I asked the pediatrician what I should do about Jaxon since he was having some low grade fevers and a lot more vomiting. She was not comfortable with the situation and asked us to refer to his GI team at Children's Hospital. This doctor was not our usual pediatrician, but seemed to have a grasp at how severe Jax's GI issue is. She also told us to bring him into the ER if he still had a fever in the middle of the night/morning.

Jax had an awful night again of course with a high fever and a lot of vomiting. He was losing a lot of body fluid including stomach bile. I checked his temperature and he was okay by the morning, but exhausted from being up all night again. The GI team said it was one of two things going on with Jax. He either had an issue from the end of his cold (like Brady) and it was aggravating his underlying condition, or he was relapsing. So we were sent back to the pediatrician (which thankfully was our regular one) to see if she could find an issue, and if not, I was going to have to bring Jax to the hospital. Well the pediatrician found a double ear infection - THANK GOD! The doctor said she had never been so happy to find ear infections in a patient before. So Jax is sleeping after a dose of antibiotics and Tylenol (his fever came back again) and I'll have to see how he is when he wakes up. He was showing early signs of dehydration, so if that sets in before the antibiotic can take hold, he may have to have an IV overnight. But we'll see how he does, so cross your fingers!

So both boys got hit with the end of this cold. At least they should be on the road to recovery. The doctor said they should feel better by Friday hopefully. I'm just SO happy to know that Jax was not relapsing to a flare up in his gut, but rather his gut was flaring up from ear infections! That means Jax has consistently remained stable with his disease for almost 6 months and counting!

With that being said, I'm eating half of a pumpkin pie and laying down until this nap is over. We are exhausted from the past 2 days! Hopefully Jax will stay out of the hospital and get on the mend here.

Look how happy the boys here!

(and yes, Jax is in his pj's again since he threw up on himself so much!)

Brady is trying to eat like a big boy with silverware and plates. He "understands" what it's for, but doesn't quite make the contact with his coordination yet. Super cute regardless that most of it ends up on the floor (Jay doesn't think it's so funny).

Report cards

I apologize for the late update! I was waiting for the boy's report cards in the mail from their NICU development follow-up from Thursday. Here are their reports based on the adjusted age of 13 months, 28 days (so basically 14 months):

Jaxon,

((I'll list what their scores were 6 months ago with the * sign after it)

Fine Motor skills - 11 months (*5 months)

Gross Motor skills - 10 months (*4 months, 20 days)

Mental scale - 14 months (*7 months)

Receptive understanding - 11 months (*7 months)

Expressive talking - 12 months (*8 months)

Brady,

Fine Motor skills - 10 months (*8 months)

Gross Motor skills - 11 months (*8 months, 20 days)

Mental scale - 14 months (*8 months)

Receptive understanding - 11 months (*10 months)

Expressive talking - 13 months (*8 months)

The therapists and doctors are not concerned about the boys and are happy with where they are at. I was a little taken back (AGAIN) by their scores, but was told that they can't score higher than 12 months on many of the tests no matter what since the remainder of the tests were for a child who is free-standing. So that made me feel a bit better. They suggested that Jaxon remain in occupational therapy and physical therapy and that each of the boys get evaluated by a speech therapist since they scored on the low end of average. This didn't surprise me at all since the boys aren't pointing things out when we say the word or in a picture let alone actually SAY the word. They feel that Brady could turn the corner at any moment, but getting an evaluation isn't a bad idea to just stay on top of it.

They didn't expect Jax to be very far with speech since he's in the middle of a physical development explosion. A baby can't focus on too many advances at once. They truly feel both boys will have better verbal skills once they are both free standing and walking. With that being said, I already have their speech evaluation scheduled for Friday morning! I'm a person who will take any and all the help I can get to get these boys where they need to be!

The boys turned 16 months old this weekend and had a lot of fun. Nana Jayne visited and we went to Discovery World Saturday morning. Jason and I were able to go out to Uncle D's 30th birthday party that evening after the boys were in bed and had some fun. We don't realize how few times we get out until we are out. We need to find a way to do that more often...we know, we know!

Let's see...what else is going on...

Oh yes, Brady has developed a cough which we thought was the lingering end of his cold, but the cough seems to be a bit much now. He had a low grade temperature of 99.2 tonight, so we gave him some Tylenol and I plan to call the doctor to discuss this new cough we've never heard before. I plan on turning up Jax's pump rate a little bit this week to see how he does. It's nice to enjoy ever second he has off that thing, but know he can only handle so much, so we'll see where that goes.

Enjoy a few pictures!  

The boys having a blast in their duck!

(This was Jaxon's SECOND pair of pj's after a few blowouts, this is why Brady is still dressed in his clothes from the day and Jax is not - fun times...)

Enjoying some fish with Nana at Discovery World.

~Auntie Rachel, Miss Nicole and myself enjoying some adult time~

(Yes, that's a Schlitz sign behind us...love love love Wisconsin!)

**Nicole made it a point to me during this birthday party that she checks this blog every single day and she would like to see an update with pictures every day. :) I promised every 3 days, but I'll do my best - Love you Nicole!

Lovin' the Library!

The boys and I discovered our city library today after the chiropractor appointment. We checked out two different animal books and a few children's musical DVD's. I assume they'll love the Elmo Christmas music one :) They have some children programs that I want to check out!

The big NICU development appointment at Children's Hospital is tomorrow morning. We'll find out how the boys have done since they were 9 months old. Wish us luck!

If you have a second, could you help support a friend's website and click to vote for the boys for a fall photo contest, thanks (#11)!

http://mybabyfaves.blogspot.com/2009/11/get-your-potw-vote-on_11.html

15 Month Stats

The boys had a good 15 month physical on Friday. They even received their H1N1 shots which were highly recommended. The boys pretty much stayed steady on their growth curve except for Brady's weight. He didn't gain any weight in the past few months, but the doctor wasn't concerned at all since this is the age they are more active and start to eat like birds. 

Jax caught Brady's runny nose, so we've had some early mornings of vomiting with him, but they are already on the mend and seem to be doing fine. The doctor said it was just a runny nose virus and nothing going on in their lungs or ears.

Here are their stats:

Brady:

Height - 29 1/2" (5%)

Weight - 19lbs, 13 oz (<5%)

Head - 47 1/2 cm (50-75%)

Jaxon:

Height - 29 3/4" (5-10%)

Weight - 22lbs (15%)

Head - 47 cm (50%)

Jaxon's weight wasn't the most accurate since Jason had to weigh himself and then weigh himself holding Jax. Jax had another absolute meltdown and refused to be weighed and they didn't have a floor scale like the GI office. Jax is getting quite the phobia of doctor's offices now. I don't think anyone blames him!

Our friend Jenny visited and played with Brady outside with her dog. 

We swear that Brady said "DOG" a few times!!

Jaxon and I having fun with the camera~

I had fun tackeling Brady

Jaxon is starting to walk along furniture with Brady now!

~Daddy getting a giggle out of Jax at lunch today~

The boys enjoying a warm fall day!