Friday, May 31, 2013

Happy 5 Year Bloggiversary!

What's that you're saying now Brady??

video

Brady can say Momom now! We're of course still working on Mama, but he's getting very close!

I also realized that my blog is officially 5 years old this week, Happy Anniversary Bloggy Blog! We're still in the game every day!
The boys are doing well with potty training. Jax wears a diaper at bedtime because of his tube-feeding and Brady wears a Pull-Up, although he's dry half the time in the morning, so that's going great. All underwear all day otherwise, there's no looking back now!

Last night Jax ate an entire Veggie Stick (they're the consistency of a puffed chip). It took about 10 minutes of chewing therapy pushing him and guiding him, but he did it. He did not do well with the ripe cantaloupe, so we won't give details on that one!
My goal today is TWO veggie sticks before dinner tonight, so I will need to start even earlier!


Tuesday, May 28, 2013

Ready for June!

Whew! We had a whirlwind weekend. Well, more like 5 days that are hopefully coming to a calm now.

The boys are still working hard on potty training and they remain complete mysteries to me. They can go an entire day without any accidents - even when traveling - and then the next day pee in their pants by 9am. I can't figure out little boys! But they're definitely catching on.

We had baby Santina here on Friday night, which reminded me of how much I tend to not sleep and check a monitor multiple times a night to be sure the baby is breathing - old habits die hard.
My family was here on Saturday through Sunday. My brother and his fiancee from Texas drove up and my mom and niece came down from Green Bay. We had a nice time together and we miss everyone already.
I was pretty drained on Sunday (allergies aren't helping!) but we did manage to let the kids play a lot outside while the neighbors had a cookout later that day. I went straight to bed pretty much when the kids did from being so drained.
We left early on Monday to go up to Green Bay to visit my Grandpa in the hospital. He's still in Intermediate Care two weeks after the surgery because he's had a few set backs, but hopefully he'll be in rehab at a nursing facility sometime this week.

We're back to the regular week grind today, albeit very rainy so it's easy to keep the boys inside in their undies to keep training until we have to leave for feeding therapy. The boys only have a week and a half of school left.... oh... my... gosh... why did I not enroll them in SOMETHING during the day for summer for some breaks, haha! Seriously...
They do start their little Blast Ball league in a few weeks which will send them over the moon, I'm sure!

Janel holding Santina

Everyone working on our yard Sunday morning?? Um, thanks!

Marley and the boys hanging on the porch swing.
The boys and I in Green Bay on Monday having lunch. They thought it was cool to be by Lambeau Field, when I didn't even realize it! Growing up around it makes you forget the excitement it may prove in a little boy!

Thursday, May 23, 2013

Embarrasing potty photos

We're still going strong with potty training. We've turned a corner for sure, although there are definitely still accidents. Brady actually didn't have ANY accidents today. The boys both go on the bus with regular underwear and have been doing great. We're on our way!

Here's the embarrassing photos!



I mean... strike a pose kiddo!

Monday, May 20, 2013

Potty Training Mania

Yup, we're in the midst of potty training up in here.
We decided on Friday night that we were just going to go for the gold and put both boys in underwear for the weekend and see what we get. We put them on the potty every 30 minutes, and we even went on some errands and used potties everywhere we went.
The boys are doing decent. Brady gets it a lot more than Jax, but even still, we're dealing with the 'accidents' which cause a lot of extra work. The boys wore Pullups on the bus and were put back in underwear for the school day. Brady stayed dry and used the potty at school, had a dry Pullup home and then after 20 minutes of his underwear and playing in the yard, he had an accident. Which wouldn't be a big deal if Jax didn't poo in his pants while I was cleaning up Brady. That's kind of how the scenarios have been playing out. They seem to really forget when playing with all their friends outside even though I have the potties on the patio and call them over every so often. So that will be their biggest challenge. Jaxon went potty at school for the first time, but then had an accident in the classroom 20 minutes later.
So yes, they're doing pretty good, but even pretty good has it's moments of chaos and wishing kids could just magically go from diapers to underwear without all the in between nonsense. In the meantime, I'll be praying to God for my patience and sanity. Wish us luck.

A little boy walking through his yard in his batting helmet and his shirt tucked into his Star Wars Underoos. Priceless.
I'm interested in getting the boys some bracelets like this. It's obvious that Brady will not be able to speak well enough any time soon to even give his name, and even Jaxon can't say his own name clear enough for an unfamiliar person to understand (sounds like Dacksa Wakabuga) so these may be good for when we're out at busy events or even going to 4k on the bus next year. What do you all think? Would this give you a little more peace of mind if you had a child with a profound speech disorder? I'm considering the line "I can't speak but I can understand you" vs "Speech Disorder" so people realize they can talk to him. If I got Jax one, would it also state 'feeding' disorder or 'tube-fed' as well, or is that unnecessary since if he were lost and someone found him, they'd call me... thoughts?

**I've been using the oils for Brady's Mulluscom now for over a week, and will do a full report at the end of this week with photos.**

Friday, May 17, 2013

IEP meeting, lots of LONG info... beware

Ahhh yes, good 'ole IEP meeting time was today. This was the first time we had both IEPs done back-to-back, and it was definitely a very long meeting.
Let me first state that the teacher started off by telling us how much she loves these boys and her favorite thing about them that they both have is KINDNESS. I thought that was very sweet.

We started with Brady and his portion actually took up about 75% of the entire meeting because potty training in general for both boys was discussed. The Special Education Coordinator was there in addition to the teacher and speech therapist, and she was really pushing for us to all come up with a plan to help the boys. She doesn't want the boys to be singled out in 4k for diapers, so we all threw around ideas and suddenly the coordinator says, "Look at this educated group of people, we surely must be able to figure this out!". That was pretty funny.

So... back to Brady. There was nothing reported about him that surprised us per say, but there were definitely parts that made me look like a deer in the headlights. It's no surprise that Brady's speech disorder is rather profound and he tested at the 1% with an intelligibility of 10% at best with context, so we knew he'd have a lot of speech therapy next year. He'll get 4x/week sessions pulled from the classroom, and an extra 25 minute session inside the classroom. The first trimester will have an extra 25 minutes in the classroom working on the iPad (his "assistive technology") and how to integrate and communicate in the class with it.

The area of the meeting that took me aback the most was Brady's preacademic skills and his attention issues. His preacademic skills weren't as high as I expected since I assumed he knew all his colors, numbers, shapes and letters, but apparently he seems to get confused. Especially when there are many on a page. He has a hard time even picking the letters of his name out when they're with many letters around them.
When Brady is faced with one-on-one questions and/or testing, he seems to be distracted, or tries to distract the instructor (he does this at home, but we just haven't picked up on it as much). The teacher believes it may be due to Brady's inability to talk, therefore he tries to get out of the situations. So we don't really know if he's "inattentive" or getting insecure about verbal communication. Because of this, it was hard for the teacher and therapist to test him. They had to do it over the course of many days at short stints. At one point, the teacher said she was asking Brady to just point out letters, colors, shapes (testing his preacademic skills) and he put his face down on the table, then he turned around and pointed to the door.
Oy.

The speech therapist said she conducted her testing over 4 sessions to keep him focused. She made notes of his off-task behaviors and during just ONE 20 minute session she noted that he: was flipping the lanyard nametag the examiner was wearing, hummed a song, flipped the pages of the presentation manual, twisted the examiner's bracelet, slid under the table, put feet up on the table and was pointing at and verbalizing about other things in the room.
And yeah... this is all written on his formal legal IEP among the pages of notes about his specific speech issues.

Also, we were told that he has immature play most of the time. Which is expected since he can't speak, so he chases kids with trucks and planes and tries to do more physical interactions rather than functional play. His inability to slow down without constant reminders and to be less distracted by people coming and going was reported, but it's all addressed in his 4k plan as "Specialized instruction in the areas of self-regulation, direction following, and social-emotional development" which he'll received for 50 minutes a week by a special education teacher in his regular class. Ok, so that one I didn't expect either, but he technically had that this entire year of 3k, so it's not that different. I guess.

(deep breaths!)

Now you'd think Jax's IEP paperwork would've been thicker than Brady's given the fact Jax gets therapy from 3 more areas, and 9 total people were in attendance for his portion, but it wasn't (!) which made me feel even crummier for Brady.
Jax was reported to have 'very good' preacademic skills (I won't list everything, but it's awesome). His biggest area of growth has been his ability to be understood in the classroom, although this resulted in him being very eager to share what he knows, despite reminders to wait his turn to be called on, and of course, he speaks for Brady. He likes being the first to do something, which results in him doing everything FAST, which results in him running into things and/or others. So SLOWING DOWN is addressed for 4k.
He'll have speech twice a week at longer sessions since the therapist can get more attention out of him, but attention in the classroom will be handled similar to how Brady's will be with a special ed teacher in the classroom helping with the skills. I did see a note that Jax is to be provided seating that is close to the individual providing instruction to limit distractions. I'm sure that will help. His intelligibility is up to 60-70% if context is known, which is such a major improvement.

He shows fine motor skills issues, which we knew, although the school OT (Occupational Therapist) was very flippant about his deficits. She actually doesn't plan to have Jax in actual "OT" for 4k, but rather to have the OT in his room for 15 minutes each week to review his writing and drawing skills and to model for the teacher how to correct him. I asked if they planned to help him with his buttons/zippers etc, and she said it wasn't important (?) so I guess I'm glad I have Jax in the OT-program at the hospital over the summer to work on those skills outside of school.

Otherwise it was great news for PT (Physical Therapy) because he GRADUATED from this therapy! He came so far in this department over the last two years, woot woot! Now... that's not to say Jax doesn't have gross motor delays still, but he is only seen by the "Specially Designed Physical Education" department for that now twice a week. That therapist said Jax needs to slow down while performing skills as well, but he'll be working hard on coordinating both sides of his body to perform bilateral coordination movements. He also needs help with establishing good balance and further developing eye/hand coordination. They want him wearing his braces all of next year yet, and said he still relies on them for core balance. I was kinda hoping they'd say he didn't require them anymore, but in the scheme of things, that is no big deal!

So there were some great things and not so great things, and I could actually write 10 more pages about all the things reported. Overall I feel better separating the boys for 4k after hearing how much Brady really leans on Jax socially. I always thought Brady was SO great at playing with others, and while he's friendly and wants to be included, he doesn't "properly" play with them, and ends up wrestling with Jax at times when he's not sure what else to do. They described him as the "physical one", which threw me a bit. They really hammered home the issue of attention and distractions for both of them, so I really hope they can get that under control over the next year.

It seems like Jax is really improving greatly in many areas, and Brady is drowning in this awful speech disorder, causing social issues to arise. I wish I could just FIX it for him. I wish I could just FIX everything for both of them. I know these can be long roads, I just pray the roads lead to normalcy for them both.

It was nice to not get any bad reports of them being purposely naughty, so I'll hang my hat on that. We definitely have some specific areas to really focus on over the summer and next school year, but overall they sure are some super fun little dudes. I know I'm incredibly lucky to call these boys mine.

Jay and the boys playing while I was grilling dinner on Thursday night.

Jay and the boys vegging OUT before bedtime while watching the Brewer game tonight. My bums!

Wednesday, May 15, 2013

Hopeful

We've had a little whirlwind of a week so far. I took the boys up to Green Bay to see our Grandpa before he went in for surgery on Tuesday. We had a really nice visit with him and Grandma out at their house. The boys stayed with Sidney on Tuesday while I was with the family at the hospital during the surgery.
Jason flew home that night and drove up early today (Wednesday) to bring the boys home for school while I went back up to the hospital for the morning. Thank you for the thoughts and prayers, please keep Grandpa in your prayers if he's on your list while he starts his long recovery progress.

Otherwise the rest of our week is pretty much filled with getting caught up on a few things tomorrow and then we have the big meeting with the school on Friday afternoon for the boy's 4k IEPs (their plan for extra help/therapies). Then hopefully heading back up for a visit with Grandpa during the weekend depending on how he's doing. I've already started bugging the the Cardiovascular Intensive Care nurses by phone for updates ;) He's already doing better then when I left them 8 hrs ago, yay!

Grandpa with the boys on Monday

All the kids eating Monday night

Brady taking his first digger off his big boy bike after school today. All smiles!


Sunday, May 12, 2013

Science Experiments

Happy Mother's Day all you moms out there!

We've had a busy little social weekend. Nana and Papa Letts came for the night on Friday so Jason and I could have his birthday dinner with some friends. Then Saturday night we were at our neighbor's house for a cookout since their son had his First Communion. Then today we went out for lunch at PF Changs, which although busy, was very nice.

I've been busy with laundry and packing this afternoon because I'm taking the boys back up to my hometown for a few days this week. My grandfather is having open heart surgery on Tuesday, so the boys and I are going to spend some time with him Monday afternoon, and then I want to be at the hospital all of Tuesday with my family. The lovely Miss Sidney has graciously offered to work from home those days so she can be with the boys. Do I have the best of friends or what?

I'm hoping to have the boys home on Wednesday for school, which is the day Jay is home from a business trip, so I'm relieved to know he can step in and help with that transport if needed. Please send out some good vibes for my family this week!

I've also started my 'essential oils' experiments on the boys. According to THIS STUDY there's a chance that organically bound iodine mixed with essential oil of melaleuca (tea tree oil) can help heal Molluscum, which has been plaguing Brady's legs for months. So we'll see how that goes and compare pictures each week.
I've also started a few other oils which I outline below. We'll see how it all goes...

Jason was testing his outdoor speakers in the kitchen Saturday morning. Brady danced his little tush off.


I've been rubbing 'DigestZen' on Jax's stomach and putting a few drops through his tube with his feeding each night. I put OnGuard on the bottoms of both boy's feet (and mine and Jay's) for immune function and anti-viral/bacterial properties (hoping it will help aide the fight of Brady's Molluscum virus and keep colds away from Jax). And the Breathe is for respiratory issues if/when they arise. I heard it's great through the humidifier or diffused.

This is my mixture for the Molluscum.

Jax got this new spacer for his inhaler this weekend and it's awesome! I definitely recommend the Phillips Respironics spacer/chamber if you have a choice.

Friday, May 10, 2013

Some great gaining

We got some great news at the GI/Dietician check up today, Jax broke the 26lb mark finally! Yay! He gained a half pound in just over 2 weeks, so he's doing pretty good with some growth. And that was with a cold and some intermittent vomiting, so that gives hope if he has some illness-free weeks ahead. (He weighed in at 26lbs 7.3oz and they weighed him twice just to make sure)

I spoke to the GI specialist and Dietician at length about possibly using Human Growth Hormone on Jax. He has his Endocrinologist appointment the first week of July, and I'm trying to gather as much info as possible in case they say his growth rate is still at a major deficit. Both the GI specialist and Dietician agreed that it would make him grow taller, but to not be afraid that he wouldn't gain weight along with it too. I was nervous he'd grow taller and fall further on the height-to-weight ratio. The GI specialist said that he knew the qualifications for HGH are pretty strict, so if Jax fell into the red-zone and qualified, it meant he had some pretty stunted growth, so nothing is taken lightly or treated flippant in that specialty.

In other news, I'm able to get Brady to say 'mamamama' each time I ask him. When we slow it down to a straight up 'mama', he's now saying 'mamnman', so he's close. He still calls me 'gaga', which is funny since his speech therapist made a chart with a photo of Lady Gaga, and a photo of me and is trying to show the difference, hilarious!

I received a call back from the speech and hearing department at Childrens Hospital for summer speech sessions. I need to fax in the boy's IEPs next Friday (when we have our meeting) for them to get on the schedule. (An IEP is a plan set for children who require special services through the school system)
So I think we'll have a busy summer, but it's a critical time for the boys to be moving on to their next goals in these areas. Jax will have Feeding therapy, Speech therapy and Occupational therapy and Brady will have speech therapy from the school district and from the hospital. I'm pretty sure we'll be outside the rest of the time!

Today is Jason's birthday and Jax has been OBSESSED with birthdays lately. Every single morning he asks me if it's his birthday and if he's 5. Well today he told me he was excited for Daddy to come home and open presents because he's 42. Hilarious. He's off by 10 years, but it's too cute.

While Brady isn't the most artistically inclined yet, he is able to control his crayon to the inside of lines. The picture on the right is Jax's and you can tell he struggles to have control, which more Occupational Therapy should help him with. He still can't draw any recognizable picture yet. It will come...

We had whip cream and strawberries with Jason's birthday cheese cake. Brady got his first mouth full of whip cream! Jax didn't want it anywhere near him!

He couldn't stop laughing!

Singing Happy Birthday and Jax trying to figure out how many fingers showed "32"...

Sunday, May 5, 2013

Running wild

We had a spring clean up weekend, meaning we did LOTS and lots of running around and busy work, but the kids still had a great time with playing outside pretty much for 2 straight days.

We picked up our new outdoor dining set, cleaned up the yard, cleaned out the entire garage, got a new grill and set it up, strung up some patio lights, laid soil and seed in areas, laid weed & feed over entire lawn, got the first round of spring/summer clothes for the boys, grocery shopped with other errands and even ended Sunday night using our spruced up patio with a steak dinner on the grill and red wine on the table, ahhh spring is here. Did ya get all that?

We had originally planned to remodel our backyard this year (we've had plans drawn up for two years now) but with other household projects that come up and are 'necessary', our plans keep getting pushed back. So we decided to spruce it up in other ways so it's liveable until then. Ce la vie!

The boys still have their colds, but its definitely not holding them down. Jax has a questionable tummy during meal times with the mucus, but that's nothing new. He's never vomited when I put that oil on him, so I may try to do it with each meal time instead of just morning and bedtime. I've heard great things about essential oil of oregano or the doTerra's OnGuard oil to heal up Molluscum which is plaguing Brady's legs so bad. It's worth a try... I've had two people tell me it's gotten rid of their warts, and I've read countless online reviews (which I always take with a grain of salt). Any of you out there have experience?

While we were doing a little outlet shopping later on Saturday, I heard Brady babble "mamama" (OMG). I stopped dead in my tracks and asked him to say it again and he did! Then he went back to "gagaga", but I'm really hoping this is the first sign that his oral motor skill is starting to figure out the "ma" sound, which was the propellant for Jax with speaking. Here's to hoping!

We were so busy this weekend that we didn't snap any photos!

How many parents of preschoolers had growing beans sent home with their kids this week? I saw a lot on Face Book!

Wednesday, May 1, 2013

Oil him up!

Well, Brady's tummy is getting better and I'm slowly giving him milk back. Obviously he had a stomach bug. Aaaaand now the entire house has a lovely spring cold, ugh. Which means Jax is puking 1-2x/day with the congestion. Not that it's kept anyone from running around like a monkey out in the beautiful weather these past few days!
I'm trying not to complain since I haven't had a cold since January, and I swear it's because I had been working out. I have been very spotty the last few weeks, so now I've convinced myself it directly affects my immune system. Who knows if I'm correct on that.

I've decided to give a particular 'essential oil' a try on Jaxon for his tummy issues. A good friend of mine has been telling me about it for the past year and the boy's chiropractor has been on me about it as well. As much as Jax's stomach is a lot better compared to when he was younger, it's still so up and down from week-to-week that we are just not going anywhere with his weight, which isn't helping the feeding process. I'm willing to try anything that's non-invasive and affordable!
So I'm trying doTerra's Digestzen (a blend of Ginger, peppermint, tarragon, fennel, caraway, coriander and anise) on Jax for a few weeks to see if it helps. I will rub on his tummy and gut in the morning and put a few drops with his fish oil that I put through the tube at night. It can't hurt! It would also be good to use on Brady for times we had with him this past week. Now that I think of it... we've been giving the boys fish 'oil' for the past few years and we think it makes a big difference. It helps with children's mood and behavior, and I'm not going to stop that supplement to see if makes a difference, no thanks, haha!

I really want to try the blend of 'breathe', but may wait until fall comes back around when we see asthma issues. Our chiropractor was on me all winter about diffusing this product for Jax when for his lung issues. So when my friend recommended it as well, I figured I need to start really looking at it (who doesn't want their home to smell like a spa?).
I don't know... we'll see how it goes with this first oil.  Jax doesn't typically go more than 10 days without some sort of GI set-back, so a 4 wk trial should give us some good indication. There are SO many rave reviews from people, but I'll give a full report of course! The oil has it's work cut out with Jax!

Jax posing with a picture that he didn't paint...

I asked him to 'pose' for me and this is what he gave me...

The boys 'trying' to pitch a ball to each other. Yeah, that doesn't work out quite yet!

Handsome little men.