Sunday, April 28, 2013

Well, poop.

The boys are doing great, except one little odd thing. Brady's GI system has just been angry these past few days. On Thursday evening, he didn't eat much food and only drank his milk. I gave him a cup of 'bedtime milk' to try and get some calories in him before bed. Well, he puked all over the place while I was reading a bedtime story (we were sitting on the rug in their bedroom). I showered him off, changed him and set him up with a bucket for the night, although he shook his head 'no' when I asked if he thought he'd be sick again.

The next day he was fine. He played all day like normal, ate 'some' food, but seemed fine. Jason was leaving for the weekend for his goddaughter's confirmation in New Mexico, so we all went to dinner together that night. Everything was fine until I noticed Brady drank an entire cup of milk, but was picking at his food again. I mentioned it to Jason when suddenly... he started puking. All over the dinner table and himself. Oy.
Jason pulled off his pants and shirt, put them in a doggy bag, covered him with a jacket and hauled him outside. Jax and I cleaned up the area with the waitress and left a big tip! Poor Brady, but how strange, right? We got home and bathed the boys right away and we had quiet time in their room with a lot of books then until bedtime.
Then.... the great smell of death was coming out of the boy's room around 11pm when I went to take Jax off his feeding pump. I was SO scared to open the door so I made Jason go in. It smelled like puke, but there was no way someone puked without us knowing because we had our ears on alert. Well... I'll spare you the details, but it involved Jason running Brady to the bathroom while I stripped the bed, opened the window and LYSOL'd the room, all while Jax snoozed away. Jason said there was a 'pool' inside Brady's diaper and pants... sick.
We put him to bed in the spare room on towels and told him to call for us if his tummy felt like that again. He woke up completely fine on Saturday. He played all day and didn't skip a beat. I did NOT give him any milk though. Only flavored pedialyte and simple foods. He didn't have any GI issues.

How odd, right? He had no other symptoms of illness at all. Well today the boys and I went to Rachel's house for the baptism party of Santina. I let Brady have a little milk at lunch time, and later in the day he had diarrhea, although not like what happened Friday night, but I'm wondering why he's so sensitive to milk right now. Could it be he has a stomach bug and milk is just irritating it? He can't just suddenly become lactose intolerant can he? So odd.

Well, regardless of the strange tummy and butt moments the last few days, they enjoyed the gorgeous weather and it's very clear to me that they will be outside pretty much non-stop this summer. They just love it.

Pants are overrated at restaurants... (and only we have vomit basins in the car)

Fly guys!

Thursday, April 25, 2013

Fine Motor Skills testing done

The boys had their evaluations at the hospital with a couple of Occupational Therapists. The boys loved it because they thought they were doing a lot of games rather than testing.
Brady tested pretty good. He's on the low end of average for a few things, but overall he did just fine, even though he isn't great at writing or drawing. Apparently there aren't high expectations for boys at this age yet, whew. It was more about grasp and the ability to copy some shapes, trace, drawing lines between places. I guess if a child can do some of these activities, it means they're on pace to correct writing and drawing, which isn't expected at almost 5 yrs old yet, I guess. I was given some tips and ideas on how to help him with his grasp and some other things.
I asked why they thought he wasn't able to peddle a bike yet, even though that's a gross motor skill for physical therapists, and she said she thinks it's because he's not super strong and he most likely needs to build up some strength. She noticed something about his shoulder blades sticking out a bit, which I guess is a sign of upper body strength weakness, but she said it's not bad and he'll get stronger this summer when playing outside. Climbing and side walk chalk were some suggestions.

He needs to keep using a big boy bike and not a Big Wheel since the Big Wheel requires different muscles and is actually harder. So we'll keep working on the big bikes! Going down an incline will help, so I'm excited to try that with them.
She said that if it weren't for his speech, she'd have no idea that he had any 'apraxic' issues (referring to his motor skills) at all. She said that people will treat him younger than what he is because of his size and speech, but to know that any motor problems will work out over time with practice and more strength. She of course asked if he was getting intensive speech therapy, yeah, it's definitely our focus.
Jason is convinced Brady will be a baseball player so he doesn't have to communicate with speech much and can just hit baseballs and run (which is his new favorite past time... non-stop laps around the house.. .for no reason) and to look cute in a uniform since he's obsessed with costumes. Ahhh, I love that kid.

Then there's Jax.
This poor kid. I actually sat in his room (the boys were in separate rooms) because the therapist wanted me to fill out a form talking about 'sensory issues' to make sure we weren't missing anything (we're not everything is fine there).
I peeked over at the tasks being asked of him, and I was so proud of some of them like replicating some block formations, but then for some others, I actually cringed when she asked Jax to do them. I sat quietly almost fighting back a tear when she handed Jax a shirt and asked him to button it, or when she gave him scissors and asked him to cut the circle out (he can barely cut a piece of paper in half let alone cut out a shape!).
This therapist gave me a lot of scores, some that were decent, but one of them was '36 months' which I believe was hand-eye coordination and depth perception (I'll get the formal reports soon I'm sure). She said he needs weekly OT therapy at the hospital once school is out, and that the school should absolutely not be 'graduating' him from OT for 4k.
I'm officially not looking forward to his IEP meeting next month in case they say they didn't plan to give him OT next year. At least Jason will be with me when I lay the paperwork down stating he's scoring so low, and let's be serious... the kiddo can't button, zip, trace, write, draw or cut paper. So, maybe the school will already be on pace knowing he needs fine motor skill help.

She said he still needs work on core strength and his low muscle tone (which is PT) so we'll see what the school says about that too. He's doing well with his hand-eye coordination in gross motor skills, just watch him hit a baseball :) There's just not a lot of force behind it.
 Jax currently gets OT, PT, Speech and a specialized phy ed class at school, and I know they told me he'd be graduating from some of these therapies next year, but now it seems like maaaaybe that's not quite right yet.
I have some paperwork to fill out for the teacher/therapists to review before they write up the IEP that asks my opinion on strengths and weaknesses, so I'll definitely put all this down for them to consider in advance. I'll even send along the new OT report in advance too.
They said Jax's feeding issues are most likely motor planning hurdles too, so to see all these fine motor delays aren't surprising to them. They do want Jax to be evaluated at the hospital for gross motor skills to stay on top of his need for the braces. We'll see what the PT at school says next month. They said his Apraxia is a lot more global compared to Brady, which maybe is why Brady has the speech part so bad? Like... did it spread everywhere for Jax? How odd to even ponder, like I'll ever know?
Jason thinks this kid will be a baseball player too, just to be featured on ESPN as overcoming his physical obstacles. Ha, well, this is definitely the toughest little elf I've ever met. He is a growly little motor-driven nut.

Of course I smelled that Jax had pooped in his pants while we were there, so I excused myself to change him. When I got back they asked me about toileting and I told them that what they witnesses is pretty much it. After all the fine motor skill testing, they told me to try and not worry too much about the potty training yet. The boys are still at an age that they often see struggling when delays, prematurity or neurological issues are at play (she was referring to the speech apraxia). Both the therapists said they believe it will just click soon enough, and to not punish or push them. Pretty much the exact same speech we get from everyone!

As for the boys being impulsive and jumping from one activity to the next and running into things and people... well Jax did this last night and gave himself a bloody shiner over excitement of a book at bedtime. I brought it up and the therapists agreed that they didn't think ADHD was an issue at all, but as for the impulsiveness that they display, they think it's because they've always had each other as constant stimulus and they're used to trying to get to things first. Part of it is personality, part of it is being a 4 yr old boy and part of it is being a twin. We need to work through it and remind them to sloooow down and hopefully school can help with that too.

Whew, that was an afternoon. Tomorrow we go back to check out Jax's hearing with the new tube. And then next week should be much quieter, I can't wait!

Wednesday, April 24, 2013

2 peas in a pod

Despite Jaxon having a stomach bug for a week and taking a day off for his ear-tube procedure, he still managed to gain a few ounces when weighed at the Feeding Team checkup. He's up to a beefy 25lbs, 12 oz. He had a good session of chewing with the therapist, and got some more tips to keep the meal moving. The team is going to try and plan a 2 day outpatient intervention during meals to try and get Jax to learn how to use his tongue when chewing and swallowing. This will take some insurance convincing, so it probably won't happen for a couple months.
But in the meantime, Jax is doing well with his weekly visits with the private therapist. He did well with chewing on some Crispix cereal, graham crackers and soft pears. He has the chewing movement down, but he doesn't quite understand how to use that tongue. I see progress and hope though!

The boys have their motor-skill evaluation at the hospital tomorrow (referral from Development Center given their Apraxia Dx). It may not give us any new information, but at least they're covered from that perspective before their school IEPs next month. Then Jax will have his ear-tube checked with a hearing test on Friday before we can start this weekend!

The boys playing "Miller Park"

Working on peddling big boy bikes.

They still don't understand how to propel their feet forward when peddling. They can't get the motion down yet, but they REALLY want to! I'm hoping to get tips when discussing motor skills at the appointment tomorrow.

Brady taking a pitch...

He nailed it! He may not get the motor skill of peddling yet, but he has some great little slugger hand-eye coordination!

The boys waiting for dinner to cook, playing Fruit Ninja in their slippers...

Sunday, April 21, 2013

Check this weekend off the list!

I'm at least 2 days behind reporting that Jaxon's ear tube procedure went great. He didn't have to get an IV for sedation, which made the day so much easier. He was given a drug through his g-tube and a mask with some gas. It took only minutes to complete the procedure. He didn't have his adenoids out, which usually go when tubes are put in, due to his speech apraxia. Apparently adenoid-removal can contribute to speech problems if there's a present disorder, so we stayed away from that.
Jax was a bit emotional afterward, but he did just fine and was up playing tag with Brady by dinner time.

We took the boys up to Green Bay on Saturday to have a play date at the Garber house while Jason and I helped move my mom from her house. It was a long, but productive day. The boys of course had a blast playing with Layla and Macy.

Jason took the boys to the Brewer game today while I met Miss Shannon at the huge 'Just Between Friends' sale at State Fair Park grounds. That sale is huge and you stand in line to purchase your items longer than you're actually shopping, but we each got some good finds and caught up on our chatting which was nice.

Jax has a Feeding Team check-in tomorrow, so I'll update soon on that. Have a great week!

Pre-op playing with the new Mario character as a treat for the day.

Post-op with Bubba.

Popsicles! Jax took 3 licks and was over it.

At home baking some muffins. Jax bounced back quick!

The boys at the Brewer game. I think this photo sums up the boys lately. Brady seems to be easily distracted by things like... oh a finger.

Miss Macy and Brady

Hams

I love Macy's grin here!

Such a fun group of kids (the boys LOVED Layla's Batman dress!)

Thursday, April 18, 2013

Ear Tube Eve

We've had a gloomy rainy week, and it doesn't look like it will let up anytime soon. Gotta love April showers!
Jax had a pukey morning last Tuesday, and I ended up giving him a gut rest for the day with a Pedialyte pump. He's been fine since and back on his food. It's so odd when his tummy acts up like that.
Tomorrow Jax will get a tube placed in his right ear. So tonight we're on the pre-op protocol of no food/fluids past such a time. I'm sure the procedure will go very fast tomorrow since Jax isn't have his tonsils or adenoids out. I know the worst part will be trying to find a vein to get an IV started... ugh, I'm dreading that part. Jax hasn't had anesthesia for over 2 years, so I'm really anxious to see how he responds to it. His gut used to shut down from it, and he'd be a vomiting mess in the hospital. The nurse said he will only be under for around 10 minutes, so hopefully it doesn't affect him. Send out a quick prayer for him tonight if you have a spare, thanks!

Monday, April 15, 2013

All Good in the Hood

Yup, we're good!
I had a quick little break away with some other moms, and the kids had a break from me (which I think they need too) and it sounds like they had a lot of fun. We had the sitter here on Thursday to get the boys on the bus and she texted me saying she loved seeing how much the boys had developed since September when she last babysat for them. That's always great to hear!
Brady came home with an award for zipping up his coat all by himself for the first time! Yes sir, we celebrate all the victories in this house!
Jason's parents came for the weekend since his dad had some bowling tournaments in the area. Nana Letts took the boys to watch bowling while Jay was at some softball games. The boys of course LOVED watching Papa bowl and playing the arcade games. Nana noticed Brady holding himself, so she ran him to the potty, and he went pee! I know it's not like he asked to go, but like I said, we celebrate all small victories!

Jay brought the boys to the park to watch softball and play on the playground yesterday (Sunday) afternoon before they picked me up from the airport, and they were in SNOW PANTS to stay warm enough to do it, Oy Wisconsin! Get here already spring!

Jason signed the boys up for their first summer team sport of 'Blast Ball'. They're not old enough for T-Ball, and since their birthday is in July, they don't actually qualify next summer either (must be 6 before May 1). So they'll do two summers of Blast Ball before T-ball, which is just hitting the ball off the T and trying to run to first base (the only base) before someone in the outfield touches the ball and yells BLAST BALL. That's it, I think. This should make them REALLY ready then once they do start T-Ball which just adds the other 3 bases for running then. Although... they are already hitting a ball being thrown to them, which is past the T-ball stage, so learning the game and the rules and playing on a team will be the focus. And yes... Jason is signed up to the be the coach. Could that BE any cuter?? That all starts in mid June and runs for 6 weeks (only one night a week), and the boys will be obsessed, I'm sure.

Jaxon finally starts his once-weekly feeding therapy this week, so I'm excited to see some progress. We're also in the middle of scheduling the boy's IEP meetings for 4k. It will be interesting to see what therapies or extra help they will be suggesting the boys get while in their 'typical' 4k classroom next year (it won't be a specific 'special needs' class). I'm excited and nervous for them now that I know they'll be in different classrooms. But I'll obsess about that later when fall comes around, lol!


Wednesday, April 10, 2013

Approved!

I received a call from the state's speech therapist saying she received my letters and was approving the weekly therapy! YAY! I just need to write a letter canceling the hearing, and we're all set. BIG sigh of relief!

Jax is doing so much better after the second gut rest. He has kept all his food down since Sunday night and he's doing great.

I'm leaving for a long weekend to Florida to visit a friend. I admit, it's the one big perk to Jason traveling so much - Frequent Flyer Miles! Woot woot :)

Jason is playing baseball with the boys. I LOVE how Jax plays 'catcher'! Jay is registering the boys for "Blast Ball" this summer. They will be so excited!

The boys are growing grass and daisies for spring!

Sunday, April 7, 2013

Looking up

Jax's roller coaster continued on Saturday morning, so I brought him in to the pediatrician to have him checked out before doing another gut-rest. She swabbed his throat because it was red and his tonsils were a little inflamed, but we were assuming it was because he had been vomiting. Everything checked out okay, so we proceeded with another gut-rest. He's only had a Pedialyte pump since Saturday morning, and then he had 3oz of banana puree today (Sunday) throughout the day. I just gave him one can of Pediasure mixed with equal parts Pedialyte on a slow pump at bedtime, and we'll see how his stomach is tomorrow from that. I'm hoping this second gut-rest did the trick!

Jason took Brady out to the Brewer game this afternoon for their 'game' together (Jax had a Marquette game last month) and Jax and I got some errands done. It was nice to have one-on-one time like that.

Our windows are done, and we even got all the staining done on Saturday night as well. Most people won't even notice that we got new windows, but we can really tell - especially on the inside. Goodbye mold and cranks that disappear because my children pull them off and use them as swords!

The boys go back to school tomorrow, YAY! I just wanted to say that out loud.

This was the house "Before". You can't tell the windows are really bad, right?


Then you look close, and you can see the wood that has been painted over repeatedly showing some wear and tear. The grids were also not really 'white' anymore either.

But THIS was the real reason for the necessary window replacement.

This is AFTER I scrubbed the windows with vinegar. I couldn't even take a photo of these windows at their worst because they were so bad, I ran to scrub of the hairy spores and sealed up the window (this is the boy's room).

Real great to be breathing all this in, but even more horrifying when a child with chronic lung disease and asthma is 3 feet from this each night. Oy.

The biggest change that we think is our bedroom window. This was the 'before'.

This is the 'after'.



We changed out the two smaller windows in the foyer to one large picture window.

The 'after' which only we will admire each day when driving up the driveway, lol!

Jax rocking his backpack and feeding pump while we shop. Love him!
Brady rockin' some ice cream before the game starts with Jason! He looks like the All American Boy right here.

Friday, April 5, 2013

Roller Coaster

Jax has been so up and down the last few days that I just don't know what to think! He was an absolute mess on Tuesday night and vomited non-stop. He woke up and did the same in the morning, so I took him in. The doc assumed his tummy was having backlash because the lining wasn't healed well enough for food, so she put him on a gut-rest for the next 24 hrs with a Pedialyte pump. He did well with that on Wednesday and then I gave him half meals of formula by mouth on Thursday. He did well. Then today (Friday) he puked up breakfast and his afternoon snack. We were actually all at the store getting some supplies to work on our windows when Jax took off his jacket. We asked what he was doing and he said his tummy hurt. Jason ran him to the bathroom and they made it in time thankfully, but then as usual, he was fine. So odd.
I mixed his night feed with Pedialyte to make it easier on his tummy. Depending how he does tonight and tomorrow, I'll see if he should be checked out by the doctor again since it just seems to be lingering much longer than usual. The fact some of his vomiting is not around meal times is just off for him too. Hopefully he'll be fine, but we have our radar up.

In good news, I received a letter from the Feeding Clinic to include with my Appeal letter that I'm submitting to the state for more feeding therapy. Hopefully it will help to have their support behind us along with our private therapist with me as well.

In not-so-great news, I found out that Jax's medical Pediasure will no longer be covered by insurance. It bothers me, but paying for food that he consumes by mouth is understandable to a point. It only stinks because the food he consumes by mouth is 'medical formula' that is rather expensive. He has some back-stock, so I have time to shop around online medical resources for the best price (Chocolate Pediasure w/fiber 1.5 cal, if anyone knows!).

Otherwise we're plugging away here. The windows won't be completed on the house until Saturday, but so far they look great. There was a bit of a mishap on Thursday when the guy dropped a window from the second floor and it broke off our outdoor water spicket. Water was pouring out! We shut off the water valve and a plumber came out to fix it.
I received our new curtains and hardware for our bedroom, but a few of the other rooms that need new coverings were just too expensive from the store I got a quote from. We have another company coming in for ideas and quotes on Monday, but we'll take our time on those.

My mom came to visit for awhile on Thursday when all the commotion of the windows was happening. The boys were so excited to see her and to get all their Easter goodies. They've been pretty happy playing with those trinkets since then.

Hopefully Jax will be fine tonight and we can just enjoy the warm weather this weekend and get some projects done!

We took the boys out for a Hibachi dinner and they loooooved it!


Tuesday, April 2, 2013

New Window's Eve

Jax seems to be on the mend. He wasn't keeping his meals down yesterday, but kept one can of food down via the pump while in bed last night. He didn't keep his breakfast down this morning, but he has the rest of the day. His vomiting switched from constant to only during meal-times, which is pretty consistent with his GI issues.
I gave him a dose of the nasal spray this morning, so I don't know if that's what really helped him, or if it's just the natural progression of day 6 of the cold. I'll keep giving it to him to see how he does.
Brady started a cough this morning, so I think he's gotten the cold now, but he is doing fine with it.

I received a call from Jax's speech/feeding therapist who is part of the Feeding Team at the hospital. She's faxing me a letter to include with my Appeal Letter for Jax's Feeding therapy. With my letter, her letter and our private therapist with me at the hearing, hopefully we can get some therapy approved. Although, with everything, it will be a looong process. Jax will see his private therapist next week and then the outpatient team at the hospital two weeks after that, so he will be seen a bit. I'll just be working with him at home as much as possible.

In other news, our windows will start to be installed tomorrow. They said it will be a two day project, so I'll probably have before and after shots to share come Friday. We've been taking down all our window treatments tonight. Half of them have to be thrown out (original cellular blinds to the house, goo) and half have to be replaced. Like all things, it's nice to see the finished product, but getting there is a bit of a pain. I guess we need to stain a small piece of wood used to line each window, which will include taping. So we'll have to put half of our window treatments back up, purchase new ones for three rooms, put those up when they come and stain every.single.window strip (even though we will now have vinyl). You know, in all our free time :)

Since Jax has been under the weather, we've been home-bound during our 'spring break'. So I've been doing some spring cleaning. I finally cleaned out all the boy's clothes in preparation for spring/summer clothes. I also cleaned out my closet, which hasn't been done since I moved into this house six years ago. I had SIX garbage bags full of clothes, shoes and bags that we donated tonight. I love having a clean closet! And the boys loved trying on all my old hats and playing swords with all the hangers!


Jax watching the Brewer's opening day. With two of his Hulks.

Off to donate!