Monday, May 31, 2010

Memorial Day Weekend

Memorial Day weekend came with lots of sun and outdoor events. We went to the state fair grounds to see Uncle Joe's horses for a horse show on Friday evening. The boys got to see a lot of "nay-nays" (not that I could get them to say it!) and they even got to go on one for a minute. We took the boys to a flower nursery on Saturday morning and they loved it. It was the best behaved in a "store"they've been in forever. Jax got sick while we were there, but we were able to get him away from any shoppers so he could do his business - thankfully, we were outside. Jay and I were able to work on the yard during their nap and get their sandbox put up. The boys had fun in the yard for the rest of the evening. 
We took a drive to Manitowoc on Sunday to see Great Grandpa K and attend a graduation party for cousin Carley. The boys had a blast at the party, and again, we were able to get Jax away from everyone and outside when he got sick. It was super hot outside, but that just does not slow these boys down. They were well behaved, but of course a hand full. Gotta love being around family members though, because they love to jump in and play with the boys!
We took the boys to a Memorial Day parade here in town on Monday morning and Shannon met up with us. The parade was pretty cute and the boy's first! Neither of the boys liked all the fire trucks that went through first, which were loud and scared them, but Brady LOVED all the clapping and waving. Jax was not into it and was a bit scared of all the stimulation. He was pretty cranky and then he got sick and was pretty happy after that. About 45 minutes into the parade he suddenly decided he loved the parade too, and went down on the curb with Shannon and waved his flag with all the kids.
So you can probably tell by the weekend's events that Jax is still getting sick each day. He actually got sick twice today. I'm not sure what to think or do about it since I actually stop his food before it's done and he still gets sick... I'm just not sure. He has some kind of blood blister on the bottom part of his stoma (hole where the tube sits in) which is bleeding, so I'll be contacting the GI nurse tomorrow to see if I can get Jax in anytime soon.
Jax was on his feet all weekend pushing his walker, and stood independently a few times without realizing it, but when Jay and I tried to work with him this evening, he just couldn't pull it together to really take any steps between us. He acted like his legs were jello, and he couldn't get a solid stance for some reason. We'll try again tomorrow and see if he's still acting the same way.
Brady is quite the firecracker. That kid sure does love to smile like a beaver (that's what we call the face he always makes now) and just laugh and run. He is just the happiest kid in the world... as long as you don't make him go inside!
Well, back to reality tomorrow. It was a great long weekend for the family, but I think Jason is REALLY ready to go back to work ;)


The boys watching Uncle Joe working out a horse.
Jaxon's first reaction to being on a horse!
He warmed up to the idea quickly though...
Brady rode the horse like a big boy!
(Excuse the blurry photo, I had Jax in my arms.)
Jax!
Brady!
The boys enjoying an early birthday gift from Nana Jayne.
A sandbox and picnic table in one - love it!
Popular scene of the day at the grad party... the boys running down the driveway 
and someone chasing after them.
Nana Letts cruising with Uncle Steve on a Harley.
Jax with his 2nd cousin Carley at her grad party.
The boys riding a deer at the grad party
Brady loved clapping and yelling YAY during the parade.
~Shannon and I with the boys~
Jason likes the sandbox too :)

Thursday, May 27, 2010

What a day...

The boys had speech and feeding therapy today. We decided to start therapy for Jax every week rather than every other week, and Brady will get some benefit from listening to the speech part of Jax's extra sessions. The therapist thinks Jax could really benefit with the extra help for the feeding aspect. He actually did rather well with chocolate pudding today by alternating bites with a lot of drinks of water. He also responds well to the tool the therapist uses called the Z-vibe. I thought an electric toothbrush would've had the same affect desensitizing his mouth before feeds, but Jax was scared of it. We're thinking of purchasing one of these tools to use at home.
I brought Jax to the chiropractor yesterday and she said his alignment is just awful again. I'm going to step this back up and bring him in 2-3 times a week again in the hopes it will help the reflux (assuming that's what this all is).
Health wise, Jax is the same. He still has diarrhea and vomiting episodes. He actually had one that scared me pretty badly today. He was choking on the vomit and was so wild I couldn't help him. When he turned bright red, I grabbed him to find a phone to call 911, and that's when he slipped out of my arms and hit the foam mat and was able to take a breath in. His vomit is the consistency of egg yolk.. it's so slippery and gooey, so when I tried wiping it out of his mouth, it didn't go anywhere. I was scared and felt so helpless just watching him convulse and NOT breath... I hope that never happens again. No worries... everyone is ok!
The day didn't settle from there since later in the day, Jax shut the bathroom door while Brady's hand was wrapped around the inside hinge. Oh my gosh... I thought we were going to go to the ER for a few minutes because I couldn't get Brady to bend his fingers. He has quite the nasty battle wound on his hand from that one.
In happy news, Jax is taking up to 5 steps between people now. He thinks it's a fun game, so we're making progress! And I didn't mention above how happy the speech therapist is with Brady's comprehension. He asked Brady for a book, his shoes and to go to his chair for food and he understood all of it. Both boys surprised me with their flash cards too. Brady always licks the pictures of food and says "mmmm". It's pretty awesome.


The boys having fun with their water table.
Brady stripped down after the water table fun and mixing me up some food.
They're turning into such little boys!
Always finding ways to get hurt...
Jax's turn!

Monday, May 24, 2010

Playgrounds rule

We had a nice quiet weekend. Jax is doing pretty good, but he will still randomly vomit, and it seems like a "reflux attack" or something because it's after he eats and it will projectile out of his mouth and nose. He gets VERY upset and it can be hard to settle him down with the convulsing that he does. 
We took the boys to the elementary school near us to go on their super cool equipment (and some great hand sanitizer that keeps bacteria OFF your hands for hours). They have an area for smaller kids with a ramp for wheelchairs to access everything. That was perfect for Jax to use with his toy-walker. We now bring that everywhere with us to encourage Jax to push that and walk rather than crawl or be carried. We're still working on the walking of course. I think it will be a slow and steady progression. All I look at now is his left foot clubbing outward. A friend of mine with little girl twins is sending me pictures of how she wrapped her daughter's foot/leg to help, so I'm going to try that. Her little girl actually had some of the same issues as Jax. She was a preemie with a NEC infection in the NICU causing her to lose a lot of her intestines. She survived and was on TPN and then a G-tube for awhile, but has fought to be a normal little toddler. She had a weak side and a turned foot, so I'll be trying anything to have Jax follow in her foot steps (like my pun?). I love those inspirations!

So the weather went from kind of cold to really hot overnight. I took the boys outside earlier in the morning and then later after Jason was home. Heat made Jax pretty sick last summer, so I'm going to try and avoid long exposures to 85+ degree weather with him for awhile. But they love being out there (and so do I) so much that we have to find a nice balance. I want to get a large kiddie pool and a sand box (with a cover) for some things to do on the patio. I'm not comfortable taking them to the public kiddie pool by myself until next year when they're both independently mobile, and most importantly, able to communicate better. So a pool on the patio it will need to be! They'll love it... any suggestions out there?


Jax being a power house with his walking toy at the elementary school.
(Notice his left club foot)

Brady LOVED the equipment.
Brady's first slide!
Jaxon's first slide!
He wasn't too eager to go down...

Our new baby deer! This is around our corner.
Brady just can't get enough of that magazine.
(Jax shredded it finally, so no more VS for Brady for awhile)
More trampoline fun.
Brady still loves the neighbor's power wheels.
It's hard to see here, but with Jax sticking out his tongue all the time now, he has "drool" for the first time EVER in his life.

Friday, May 21, 2010

They can hear - so it must be selective hearing then!


The boys had their hearing test at Children's Hospital today and they both passed the test with flying colors. So that can be checked off the list as a possible issue for their speech delay. The audiologist mentioned how great Jax looked for his extensive medical issues and said, "He doesn't look like what his records indicate". Yeah, we get that a lot.

Jax had his last PT session yesterday and the therapist thinks he's rather close to walking, but thinks his right side is still weak from his torticollis. His left foot also clubs outward when he's walking, which is another sign of his left side dominance. She said he'll need a wedge in his shoe at some point. We're working on exercises and lots of practice. Jax does pretty good going from the table to me on the couch with about 3 good steps, but it doesn't ever go beyond that little "game". We'll keep working on it.

Jax ended up getting pretty sick in the car on the way to the hearing test today, which was rather weird. He got fed a little more than 9oz over a 2.5hr period (during his nap) and then he got sick 40 minutes after that was all done. I just don't get it. This is so frustrating. He still has diarrhea which we don't understand either. Otherwise, the boys are some crazy little men who love running around and being boys!


Jax starring at the trees blowing in the breeze. He used to do this last summer laying on the foam mats while we were outside. He hasn't lost that charming quality. I always stop what I'm doing and watch for a minute with him... it's one of my favorite thoughts of him.
Brady was in LOVE with Nana and Bumpa's new puppy. 
Nana visited Wednesday afternoon and gave Jax a haircut.
The only shot I got of the of all of them with the puppy!
This is how I transport the boys around the neighborhood to play. They always try to buckle themselves in now! It will be nice when they actually can.
Fun on the trampoline (aka - big playpen) and this is Jax's new face. 
He figured out he has a tongue!
Jax finished his breakfast, so I took his backpack off. Brady was trying to put it on, so I helped him and he fell backwards with it on! Now I know how Jax feels and he wears it full of food!
The neighbors left some toys in the trampoline and I realized how Jax treats the dolls. He shakes them and then throws them. So very sweet of him.
The boys found the neighbor's Power Wheels and had fun pretending to drive!

My loves.
Jax's toothy grin!
The boys trying to figure out how to connect Jax to his pump.
What every mother likes to see. Her baby boy face-deep into a Victoria's Secret catalog.
Caught ya Brady!
**A big thanks to Sidney for the cute t-shirts!

Thursday, May 20, 2010

Sad news

One of my MoM friends lost her little boy tonight. He passed away unexpectantly at only 20 months of age. Little JW has the hearts of so many people. My heart aches for Tiffany and her family, please keep them in your thoughts and prayers. She has supported me through many of Jaxon's dark days, so please pray for them to find the strength to get through this unbelievable time. This is quite the reminder to hug your children and be thankful. (http://blakeybabies.blogspot.com/)



** I'm sorry I didn't update sooner. To answer many of you, I've kept Jax's pump rate down very low and have been feeding him over 2.5hrs 3x/day. He's kept everything down in the past 48hrs so far.

Tuesday, May 18, 2010

It continues

It was nice to have some great weather to get out into. The boys just love being outside, and our neighbors have a big screened-in trampoline that I love to get into with the boys because it CONTAINS them! It's fabulous. We took the boys on a long walk to Copps tonight for some grilled cheese sandwiches and some custard tasting for Jax.
Jaxon had two vomits today. His morning and his night feed made him very nauseous when he was finished with them. He held everything down yesterday, so this is confusing. I'm going to give him his alternative feed schedule tomorrow of every other hour all day long to see if that helps. I think we need to get moving on his next round of blood work for the alternative doctor to re-check a lot of his levels. Although, the GI docs really think his body is just stressed from the virus. I don't know. I'd like for this to go away for him now.
Brady continues to do a fake "gag" for sure when he sees Jax puke. It's the strangest thing. His understanding of things is just taking off like crazy. Jax has been doing decent with practicing his walking. He likes to do the practice rounds, but doesn't seem to have any interest in venturing out on his own to actually try it. It won't help with days like tomorrow when he has the backpack on so much, but we'll practice as much as we can!

Sunday, May 16, 2010

Sunday

The boys have remained the same since Saturday. Jax will go a day without vomiting and then do it the next, it's weird. I'm of course hoping it all shuts off again at some point. He had diarrhea four times today, but he's acting totally normal in every way. Brady has some yucky diapers, so something is still junking them up I think.
I took the boys to watch Jason play softball Sunday after their nap. Yeah, that is not a lot of fun with these guys now to be honest. I brought them in their wagon with snacks and toys and of course all they wanted to do was get out and take off. So I spent the whole game trying to entertain them enough to stop trying to escape their seat restraints and also chasing all their toys that they kept throwing everywhere. Brady loved screaming YAY and clapping when everyone else did, but the cuteness stopped there! The boys have just been on a rampage lately. The lady sitting next to me had teenage twins and told me things get easier around the age of 3, oh geeze, that's so far away! I believe one lady witnessing the craziness said "wow, talk about wanting birth control".
Yeah, thanks.
They're not "bad", they're just toddlers who want to explore, and when you don't let them, they only know how to share their displeasure with screaming and throwing themselves. It's so neat when there's two! They're lucky they're cute!


They can open all sorts of containers by themselves now. 

Jason has created a monster. 
Brady is obsessed with mowing the lawn with him, it's pretty cute.

Saturday, May 15, 2010

Just a virus... again!

We brought the boys to the pediatrician yesterday. Brady's fever had stopped and his ears and throat looked great. The doctor said it must be a virus that he picked up, but it seemed to be a quick one. Those are the ones we've been used to all winter and they haven't been bothersome to the boys badly.
Jax didn't vomit yesterday, but he did today. About 10 minutes after he finished his morning feed, so that means he got a lot digested at least (since the pump ran 10oz over 2 hours prior to it). The doctor thinks Jax is still dealing with the lingering effects of the virus, or maybe he picked up what Brady had since he did stop vomiting for four days. I'm hoping he is responding to the other virus and this goes away as well. It's odd that he has one random vomit without any pattern. It could be any of the meals, for any random reason. He acts totally fine other than the vomiting - which of course would break your heart to see. You can tell he feels so sick and then he'll finally get sick and be totally out of control upset and scared. Brady did his gagging thing during the whole process this morning, so we're starting to think he's trying to copy Jax. The doctor was happy to see the boys so active and said they looked great. They only have a 4oz difference in weight, Jason said they'll never break 22lbs!


OH! Here's some great news for you all... Brady pooped in the bathtub Friday night. It's our first experience with this so far! Jax was all cleaned and out of the tube (lucky duck) and Brady just let it go while standing by the edge. Let's just say I found out that Jason is NOT okay with cleaning up his own son's poo unless it's in a diaper. It was pretty funny.

Today (Saturday) we went to the farmer's market in town to walk the boys around in the fresh air. Things were going great until Jason bought them a bubble wand (coolest $3 ever by the way), well the boys fought over it in their wagon and a complete out-of-control meltdown happened. Yup, we left to go home for lunch and naps immediately, but we had to "parade" our screaming twins through the entire market to get back to the truck. All the people were smiling and giving us understanding looks, but we were a bit mortified. This age is SO hard! The kids have no way to express their feelings and don't understand a lot of words or discipline very much, so it's can be challenging for a bit yet! All we can do is remove them for now!

Jason playing with the new bubble wand with the boys after their naps.
Brady being totally silly.

Thursday, May 13, 2010

Fever and possible steps

Brady had a fever (101.4) today. I wish I would've taken his temperature yesterday when I "thought" he felt warm, but disregarded it (why? I don't know). He's been doing this weird gagging thing, so I'm going to bring him to the pediatrician tomorrow to get checked out. Maybe his ear infection never healed? I have no idea. He's had disrupted sleep now for 2-3 days as well, which isn't like him.

Jax did really well today until bedtime. He kept his food down and was super playful all day. He finished his food and crawled up the stairs where he had a tickle fight with Jason and was laughing hysterically. Then I tried to brush his teeth and he refused to let me in. I saw his "sick face" and grabbed a towel just in time to get vomited on. This was his second day of not napping and puking, so I'll be taking him in tomorrow as well. Jax is supposed to have a follow-up with the doctor anyway since being released from the hospital.

Some good news - Jax was participating and actually attempting steps today with me. Usually when I challenge him to walk to me from holding the table, he always gets down to crawl or ignores me. Today he actually tried it repeatedly and I saw a few tiny independent steps! He's nowhere near actually walking, but he actually TRIED, so I was thrilled with him today! We did a lot of celebrating songs each time and he was understanding the praise was for trying to walk. So we'll see how his progress goes with this!

Wednesday, May 12, 2010

Set back

Jaxon got sick this morning and vomited up his morning feed. I could see he started to not feel well, so I turned off his pump and ran to get a flush and a towel. By the time I got back to him, he was vomiting all over himself and the floor and his toys. He was SO upset. I just threw towels over his puke (so Brady wouldn't put his hands in it) and held him. Brady then started doing a gagging type of cough and would hug the other side of me. I think he was trying to pretend puke to get some cuddles. I'm not sure, but it was new and kinda weird.
I gave Jax some Zofran to help calm his belly and soon enough he was just fine. He was actually a giggly crazy man. He didn't take a nap and was pretty wild until bedtime. I'm hoping this was a random incident and not a sign of continued sickness again.
Otherwise the day was full of reading about farm and zoo animals, building block towers, blowing bubbles and singing.

Brady put on Jason's hat and screamed DADDY!
Brady was making pretend food and saying "mmmm" when tasting the invisible eggs.
Jax shoved him out of the way and microwaved Brady's cooking supplies.