What's your name?

Mr Jaxon can answer this question, yay! It sounds like, "Daxon" I think, but nonetheless, he answers! His teacher said that Jax will approximate each classmates name in class when doing the good morning song, and is pretty close with some of the names. His eating is getting better each day too. He still will have early meal gagging, but it much less intense and shorter (and not at every feed). He seems to sneeze a lot during meals which is funny... unless his mouth is full. Then it's not funny!

He ate manicotti, spaghettios and BBQ chicken just fine the last few days, so I'm very happy he's expanding what he'll accept. Oh, and some baby foods that I threw butter, sour cream or pudding in with for quick snacks.
Jax has his next clinic follow up in 2 weeks. If he gains weight, I will be discussing if we should pull an ounce out of his nightly tube-feeding. With the amount of food Jax is starting to take at each meal now, I would think that in two weeks, it may be a possibility to start weaning from the night feed - we shall see! Well, actually I'm supposed to do it myself if he takes a certain amount by mouth during the day, but I almost feel like it might be good to let Jax have "too much" food for a little bit before taking away that last tube feed. He could stand to gain a bit of weight!

I sat in on Brady's individual speech class today. It was with a sub-therapist who is usually the "aide" during Brady's regular class. I didn't find the session overly great, but noticed Brady was really squirrely and not very attentive to the therapist's requests. I wondered if it was because I was in the room, so I will wait outside for his next one on Tuesday (his group class is on Friday).
Brady went through a questionnaire with the therapist that Brady did his first day of class. He only scored one point above his baseline from last fall, so I'm sure that will be a discussion when his normal therapist comes back (she's on maternity leave). I was surprised (and slightly saddened for him) by some of Brady's answers.

A few questions he got wrong with flash card prompted answers (and were wrong 5 months ago) were:
Who feeds you breakfast? Mama or the mailman.
What is in the sky? Clouds or apples.
What is at a farm? Pigs or skittles (yes, the candy)
Does a cow meow?
(I can't remember the others)

So we'll see how this all correlates during the next IEP meeting this spring. I will say that Brady has so much INTENT when speaking back, so it kind of breaks your heart. I've noticed lately that it seems like he gives up trying to say words and immediately goes into whining mode when he wants something. I need to talk to the therapists about this and maybe start implementing a ring of flashcards for him to point to his need instead of the dreaded whining. The only problem is that there aren't flashcards for the daily 3 year old wants. Like... Spiderman's flipper...

The boys are starting to "get" that they should be going potty on the potty instead of their diapers. My neighbor gave me an old favorite book of her boys that she got in London. It's called, "Everybody Poos" and there's a great page of pictures that shows a baby pooing in his diaper (slightly graphic) a toddler boy on a potty, a big boy on a toilet and then a daddy on a toilet all on the same page. We talked about the pictures and they both had that "ah-ha" look like they suddenly understood that what they do in their DIAPER is what they're supposed to be doing on that darn potty that I always put them on!
So each morning now, I'll be putting them on their potties to sit while I make their breakfast. One of these mornings they'll be bound to tinkle and realize how to do it. I won't get my hopes up that it will be anytime soon, but if I have anything with "developments", it's patience!
So no formal training in that area yet (I'm actually not supposed to while food-training Jax) but I like to put the idea "out there" for them to maybe help things along when they do show they're ready.

Here's a few photos of the boys in their potty knowledge glory this morning!

They sat here looking at the book on the floor and taking peeks of the cartoon for an entire 20 minutes while I made them breakfast and prepped the school snacks etc. So cute!

Happy St Pats weekend!

This weekend seemed to last forever! Now how many times will hear that??
The boys had fun at school on Friday and Jax ate some green pudding with his class. The boys played outside the entire afternoon with the neighbors and loved it. We all went to the YMCA in the afternoon and then we took the boys to Red Robin for dinner and we had a GREAT time. The boys were so well behaved and it was actually enjoyable. We fed Jax right before going to the restaurant, and that worked out good.
We were able to hang out with our neighbors a little bit after dinner to watch some of the basketball games. SPEAKING OF... Jason is immersed with his brackets and pools. His phone beeps with a text message pretty much hourly I swear! He was so happy to have lunch at a sports bar on Friday with some friends to talk non-stop brackets, and now this evening he's there with our neighbor - it just makes him so happy!

On Saturday, we took the boys down to Auntie Rachel's. She babysat for the afternoon so Jason and I could hit the outlet mall. The boys are NOT ready for such warm weather with their current wardrobe. They have mostly 24m/2t t-shirts from last season and this warm weather snuck up on us! The boys had a BLAST and of course took over the pugs like they own them. Jaxon ate great for Rachel and took his lunch and a snack for her (yay!).
We picked up the boys and then picked up Nana Letts from the airport and brought her back to her car at our house. Jason taught Jaxon how to blow a whistle. Let me tell you, I've heard enough whistle blowing now to fill a lifetime! Brady is hilarious because he doesn't get how to blow into the whistle yet, so he puts it up to his mouth and makes a whistle noise - love him!
We kept it low-key the rest of the night and after the boys were in bed, we actually did paperwork and worked the rest of the night. Now that I think of it, we should've drank some green beer or something to make it more festive!

On Sunday, the boys played outside most of the morning after coming home from the YMCA with Jason. We ran a few errands, but then used the rest of the day to let the kids outside while we did some spring cleaning. Jay cleaned out the garage (while chasing the boys) and I did all the bed linens and then odd things like getting the ladder upstairs to clean the ceiling fan. SUPER interesting isn't it??
We also did a small DIY home project today that turned out pretty decent. Jason is not the most patient or focused person when it comes to drawn out details, so I took most of it over.

And as of now, I'm going to eat cookies and watch Glee on Netflix and just SIT and be HAPPY myself! Enjoy the start of your week everyone!

Does this make us bad parents? We let Jax play a video game at the restaurant while we ate. He was engaged with us for half the time, but the other half he did this.

Brady having a blast hitting Jason with his balloon.

Our two leprechauns playing with their pugs at Rachels. (Thanks for the t-shirts Auntie Sidney!)

Ta-da! Some backsplash that we practiced on the butler pantry for the guinea pig. This small space took all day, and I can tell where I really figured out how to do it nicely, so I dislike half of it and like the other, go figure! Now to find time to do it to the kitchen or decide if we even want it there, hmm...

Jump around!

There has been a LOT of playing outside and a lot of tears when having to come in. I've realized that since Jax is thirsty, I give him his high calorie milk as a drink for his snack and he will consume plenty for a "snack" so it cuts down on having to sit through a session.

Jax has been doing pretty good with food. A bit less behavioral puking, and a bit more volume back to where it's supposed to be. He is also accepting more tastes instead of just pb&j, pudding and yogurt. He's now taking mac & cheese, lasagna and veggies mixed with butter pretty good (all pureed of course).

I've been working with the boys on their Big Wheel bikes and Jax is starting to get it. His problem is that he's so short, he doesn't reach the peddles very well. Brady still doesn't understand the concept of PUSHING with his feet, but he'll get there. They love their scooters being outside now from Christmas and of course the good ole' Cozy Coops from last summer. Otherwise the kids have been running like crazy with the neighbor boys on swing sets, the trampoline and trying to make a basket with the basketballs. Spring is definitely in the air!

All the boys jumping around today.

I thought it was cute to see Jax play jungle safari with the neighbor's nanny. Notice he's pretending to look through binoculars with his hands, when he's wearing some around his neck!

A nice surprise

We got a nice surprise yesterday. My niece was in town shopping with her mom and they asked to stop by. Mondays are perfect for us, so it worked out nice! The boys were so excited to see Marley's games that she had on her IPod. They ran around like crazy monkeys playing tag and we had a nice little dinner.

Our weather continues to be unbelievably nice. I heard on the news that today tied a day in 1931 for being the warmest of this day. After I got the kids from school, we played outside for a bit. After Jay was done with work, we all went to the YMCA and now as I type this, the boys are walking with Jason around the block before an ice cream bed time snack.

I forgot to mention in my last post that I got a call from Jax's pediatrician checking in with things. She said she received a nice update from the GI specialist. She (the pedi) is contacting an Immunologist to discuss Jax's history. She said that she wanted to get a professional opinion on his immune system function since he showed some big system break downs over the last year. She said that she wasn't overly concerned that he got pneumonia given his lung history, but she was a bit concerned about how hard and fast his entire system would go down. She's hoping the specialist will order some specific tests, and the next time we're at the hospital for a feeding team checkup (in about 3 weeks) we'll stop by the lab for a blood draw.
If any treatable answer could come from it, I'm totally on board! So we'll see where that goes as I await a call back from the pediatrician with an update on all that.

Otherwise, we'll be enjoying this amazing weather and keep on, keeping on!

All the kids in stripes!

Kicking off spring

What a gorgeous weekend we had!
On Friday, the boys enjoyed school and then Nana Letts came down on her way out of town. We all piled in and drove her to the airport and saw her off for her vacation with Auntie Christa and some other gals. On the drive back, we decided to stop up at a new pub that some friends own for dinner. The boys LOVED sharing a chair and playing video games. I was able to feed Jax an entire yogurt while he played the video game. We were a little nervous that he wouldn't eat anything while out of the house, and since we were on the road when we decided to go, we didn't feed him ahead of time like we're supposed to. Thankfully he ate a bit!

We got some much needed errands done on Saturday, as well as some work and play - it was so nice out!
We took the boys to the zoo first thing this morning (Sunday) and the boys just LOVED it. We went early, so there weren't a lot of people there. It was a lot of fun. We even tackled getting the boy's hair cut - very productive! Jay played with the boys outside for the afternoon and we got a taste of what summer will be when calling the boys in for dinner. WHEW! They HATE coming in and cry like crazy little people!

Jason took Brady to a batting cage to see some friends tonight and I got some alone time with Jax. It was a nice little weekend.
Jax was quite pukey with his feedings today. It's either behavioral or because of a slight runny nose. Either way, we still figure it out!

The boys all fired up by the gorilla exhibit!

Jax getting too close to a peacock.

The boys on a tracker in the family farm. We found ways to get Jax to take bites of ice cream during snack time.

Finishing up on a train ride!

Brady loving life!

Good behavior

Jax has been doing well with feeds regarding his behavior. He still has coughing, gagging and sometimes puking, but he is willing to sit and eat without much scolding or "therapy". He responds well to me counting to 3, since he knows he'll get a timeout no matter what.
I'm trying to feel him out when he's had enough, and today it worked well for lunch and dinner. I wish he could tell me he feels "full", but he still doesn't quite understand the feeling that ceasing food will make it feel better. He will learn!
He may live on yogurt, pudding and peanut butter sandwiches (pureed of course) for the rest of his life, but it's a start (smiley face!).

I kept Brady from speech therapy on Tuesday because he had explosive diarrhea and a slight rash (and gross nose). I was hoping to get him into the doctor thinking this is still from his fever last week (and possibly an untreated ear infection) while Jax was in school, but he couldn't be seen until 5pm. I monitored him, and he ran around like crazy and acted fine. He took a two hour nap and woke up with no rash and no sign of diarrhea for hours. I canceled his doctor appointment to see how he would be today. I don't want to take the boys inside a pediatrician's office unless absolutely necessary (germ purposes). Today he's fine!
We had a very low key day today which was nice. I got some work done and the boys did some time on the air hockey table, a game of jump-around on the furniture, a discovered play of The Cat in the Hat on Netflix (that's how I got some work done) and a lot of running around pretending to make action figures fly.

Doesn't this look exciting? No action has ever happened yet in the froggy potties...

The boys at 7am

Feeding team follow up

Today was such a great follow up ~
Jax weighed in at 23 lbs, 7oz - so he maintained his weight! Jason and I were sure he lost weight, but I think we were so worried about it, that we had it in our heads that he was getting smaller. When really, he's just so tiny it's easy to think that. So that part of the appointment was great.

Then I had a meeting with the entire feeding team (nurse, psychologist, speech therapist and dietitian) where we went through Jax's feeding behaviors at home, his volume acceptance and his overall health. As for his feeding behavior, we discussed his early meal vomiting and I was assured that we're handling it correctly with slightly ignoring it, yet being ready to support the actual puking. I told the doctor that I've been getting "annoyed" with it and feeling guilty, but she said that's how I SHOULD be portraying it. Don't give negative or positive attention. Don't ask if he's okay, but ask if he's done yet. So I guess what he's doing is normal, and he's basically having a physical reaction to his feelings about eating.

Jax's volume acceptance is supposed to slowly but surely get better. The more food he takes at each meal means less food at night through his tube. This basically is a natural self-weaning process that happens when his body is ready.

And finally, his health. I HATE putting this out into the universe to come back to bite my butt, but Jax's health since January has been amazing. Even with a bug in the house (Brady's fever) he's been fine. I'm sure part of it was being out of school for an immune system break, but I also wonder if his body is receiving nutrients differently with real food? I don't know, but I like it. And yes, you can expect a report that he started a cold any day now that I wrote that all out!

The team observed me feeding Jax his lunch. Brady apparently just hates the hospital because he was totally nuts through the whole thing. Jax ignored him and ate his lunch fine. He had a few gags in the middle, but I ignored and we got through it fine.

We saw the GI specialist after all of this and the doctor was amazed with the results from the clinic. He said Jax went from being 100% g-tube fed, to 32% in 5 weeks! He said Jax got his big push and now has the tools to keep going at home with out-patient support. I told the doc that Jax's stoma (the hole that his tube is inserted into) bleeds easily with friction. He looked it over and said that if Jax was going to have the tube long term, he'd need to have it repaired, but since he doesn't think Jax will have it past this year (OH MY GOD) that he wants to leave it alone until he will have it surgically sealed up.
SAY WHAT?
I asked the doc to back up and he laughed. He said that no one can give me a time frame of when Jax will be tube-free, but he thinks it will be "months" and not "years". He said that Jax will need to intake all his nutrition, hydration and medication orally for two straight months and then they're pulling the tube. The sooner you treat the child like they don't have that port, the better. If he gets sick and needs an IV line, well, "welcome to what most people have to do" is what the doc said when I asked!

Since Jax's stoma site has prolapse pushing through (tissue from the stomach lining), he will need it surgically closed and cleaned up. (um, are we really talking about this like it's going to HAPPEN?!)
The doctor said that obviously surgery is never fun to go through, but in the long run, it will be great for Jax because the scar will be very slight and nicely sealed up then.

So... not to get too ahead of ourselves, the plan is to continue doing what we're doing. Expect and deal with a toddler pushing the limits. He's allowed bad days and so are we. We should see more good days than bad, and I can always call the doctors for advice between appointments. We have to remain giving only smooth foods until we're given direction from the doctors to work up on texture. I think that will be awhile yet. We will see the psychologist and dietitian in 4 weeks for the next follow-up and then the entire team again in 3 months. The GI doctor said he is really excited to see what Jax is doing at that appointment (July 2).