Wednesday, June 27, 2012

Summer school is here

The boys started their summer speech class with Miss Tricia (Miss Trish) and they looooove it. She is the nicest lady and even said she heard all about Jax from her four year old daughter. Apparently her daughter was a "typical developed peer" in his class that is placed to help model development for classmates. She told her mom that Jax was in the hospital a few times over the winter, so they all made him cards, but ONCE he was there when he wasn't sick and he came back without his backpack eating pudding!
Does that just melt you??

Then when we were walking down the hall to leave the building a woman yells, "Is that JAXON?" Um, what the wha? We've never even been to this school before! The lady runs up and says she worked in Miss Sue's class a few times and recognized Jax Man. He didn't seem to recognize her, but he gave her a high five regardless. Too cute.

Nana Jayne came to visit on Monday afternoon and the boys got some early birthday gifts since they're to beat the heat outside. They got a new sprinkler, a splash mat and a small pool. They tried out the sprinkler and splash mat today and thought it was the coolest thing ever. Tomorrow, they'll dip in the pool for a bit. I hear it's supposed to be even hotter, so I think we'll be outside briefly and in the  kiddy pool!

Jax's eating is going pretty good. We realized he was taking extremely small "bird bites" because the spoons we were using intimidated him, so he wouldn't open his mouth very wide. Sort of like he was defending his mouth. I found a very old thin spoon that we got from Mr Nick years ago (it attaches to the Z-Vibe) that has been working well, so I ordered some small feeding spoons online today. I hope they help. He's eating graham cracker crumbs in his pudding with the therapist and small bead-sized noodle chunks in his pureed food, but he still does not understand actual chewing. They keep telling me that it will come.

I also broke down and ordered Jax some new tube-pads. His old ones are just getting so beat up that they're actually shredding from being used/washed repeatedly. We've lost some in there too. I didn't want to buy any knowing this is most likely Jax's last year with the tube, but it had to be done. I got 5 new ones (about 2 days worth) and they make his old ones look SO pitiful! I really should go ahead and order 5 more.

Brady said, "Mmmm aahhh" today in speech and even modeled it for me after. I'm so proud and he's on his way to mama! The teacher said that she's working on 2-3 word phrases with Jax, which he says, but he can't pronounce well. Tonight he went around the house saying, "Bay-mm! Ware arrre mmm" (Blankey, where are you) looking for his blanket for bed. But he did say, "What's da?" rather well when pointing to something. Hmm, what else does he say? Ah yes... we get a package a day at least for the toy drive and now Jax always says, "A Baa, for meeee?" (A box, for me?) Nope, it's for the kids at the hospital! "Ok!"

Fun with Nana

Saturday, June 23, 2012

Visits, blisters and painting, whew!

The boys got quite the treat with Uncle Adam visiting on Thursday. They opened early birthday presents of Brewer backpacks and other baseball gear. They were wild monkeys for the visit for sure!

It's been pretty quiet around here otherwise with lots of sunshine and work all mixed together. I had the boys at the chiropractor yesterday and we noticed Brady's bum left foot. He has a large blister on his heel, and the doc noticed he slightly pronounces inward when he walks (you can't see his arch when he steps). She actually wants him evaluated by PT for shoe inserts. Um.. that shocked me a bit. The boys don't get services like that over the summer, so I guess I'll be bringing it up to Jax's physical therapist when the school year starts.

Last night I had a painting-date with Miss Rachel. She came over for some pizza with the boys and we left to do our next round of "groupon date". We both think this round of painting went better, but maybe that was because we didn't drink wine this time! ha.

Jason is taking the boys up to Manitowoc today to go visit Uncle Joe's farm and to play with family members in a softball tournament. I'm taking a break back at home and getting some things done. The boys were really excited to hear they were going to see cows and softball. Looks like a nice weekend!

Pregnant lady in a smock!

Museum quality, we know...

Uncle Adam and the boys!

Wednesday, June 20, 2012

Who pees on themself?

The boys have had a pretty typical week, but definitely some added fun. We took them to Jason's Monday night league softball game since it was earlier. The boys did their typical "run around" and drive me a little crazy routine, but I guess that's what you get with 3 year olds. Jaxon's speech psychologist and her family were there watching her husband play. She loved seeing Jax run around, and even though I told her I didn't think he was gaining any weight, she said it was great to see him just be a normal kid. We'll be seeing her at a formal appointment with the rest of the feeding/GI team on July 2.
I had tons of work to do on Tuesday and had the babysitter for a couple hours. Well it was SO hot outside that I sent them to Monkey Joes (an indoor bounce house) and I guess the kids had an absolute blast. So much so, that Brady decided to lay on the floor and have a meltdown when the sitter (I should refer to her by name, Lindsey) tried to leave. So Brady came home crying that he couldn't stay at a bounce house for an entire day. Yup, to be three years old.

I swear the boys are still nowhere near being ready to potty train, and it can be frustrating some days! Yesterday I was changing Jax's poopy diaper, and while I had his legs in the air, he decided he was going to pee at that moment. Yeah... all over his own shirt and almost on his face. Really? I mean... really?

Just waiting for the painters to come and stain!

Sunday, June 17, 2012

Father's Day!

Happy Father's Day y'all!

We had a nice weekend at home. My cold has been going in and out and is still hanging around. Summer colds are cruel!
We stayed around the house on Saturday trying to get some things done, and I was still trying to recoup a bit. Jason removed half of the warped cedar siding off the front of the house that is being replaced this week. There were a few rain storms moving through that day, so there were some breaks inside where the boy would watch a movie and Jay and I worked on a big work project. The boys played a lot with the neighbors whenever the sun would come out and we had a cookout next door later.

Today was Jason's choice being Father's Day and all. We went to a Madison Mallards game with friends and even celebrated little Olivia Alf's birthday. It was SO hot, but a very nice late afternoon with some old friends. The boys didn't stay put in their chairs like they do at the Brewer games. They really felt the need to keep going in front of the crowd to dance, cheerlead or run around, but it was nice to see them have a good time.
We got the boys in the bath and then bed at a decent time with time to spare for Jay and I to finish up a work project.
This upcoming week looks super hot, but I think the boys will still get out as much as possible. It's their last week before summer speech courses start up.

While we were on our neighbor's patio, we could hear the kids doing karaoke. The neighbor kids told me that Jax was singing the alphabet song, so I walked in and caught the end of it. I think he's around "LMNOP" here, it's adorable.

Brady is totally "helping".

He was so pumped to play with sticks from the house!

Jason's construction site got a bit unsafe for the boys, so I enticed them into the backyard with a sprinkler and swimsuits!

At the Mallard's game!

Daddy's with their boys. That's Mike Riesel and his super cute 2 yr old son, Cole.

Brady loving up on Millie the Mallard.

Olivia trying to get the boys to look for a photo! (even with braces on, Jax is really stalling out in the height department compared to Brady!)

The boys cheering and dancing on top of the Mallard's dugout.

Enjoying some mascot time with Olivia.

Birthday cupcakes! Brady was pumped.

Hanging with Hannah Karns. She was their age when Jay and I got married!

Happy Father's Day!

Thursday, June 14, 2012

Thoughts on this research??

Thank you for all the emails and messages about my last post. You all give me such great ideas, opinions and thoughts on subjects like this.

I've been thinking a lot about a particular research paper sent to me that you can see here.  It's one of those things that you read and find yourself nodding your head the whole time and finding yourself getting excited with each new page because it's describing your kids completely.
It's a study done on a group of neuro-characteristics that respond to specific supplementation (Omega 3, which is fish oil and vitamin E). All the "characteristics" are my boys up and down and all around (Apraxia, allergy and malabsorption). It is so fascinating to learn how the gut is so closely tied to neuro.

I printed it up and went waving it in the air to Jason. Mind you, we used to give the boys fish oil as a suggested supplement from Jaxon's alternative pediatric MD when he was an infant. We've become laxed about it and haven't given it in the past year and then some. I know our chiropractor has been on my CASE about Jax getting his vitamin E levels checked since all his winter illness, but really, that sounded like so much work! (mother of the year, I know)

Then Jason said skeptically, "why is Jax progressing forward so well without it then?" Hmmm. I thought about what was different between Jax and Brady and realized that Jax received 99% Pediasure by his tube all year. So I looked at his formula and guess what... it's chalked full of DHA, Omega 3 and vitamin E, and is also gluten free (although he does not get the recommended high dose of vitamin E through the formula). Jax has pretty much been on this suggested diet. Now Brady has a "good" diet, but we were never looking to give him these extra things. So is this all coincidence? Maybe. Maybe not, I don't know! But isn't it interesting?

I told Jason that I wanted to drop a copy of the study off to the boy's pediatrician and ask her to review it and discuss it at their physicals next month. Jason told me to give it to him to read first. He was on his way out for a business trip and said he'd read it on the plane.

Sure enough, I get a text message from him a few hours later saying how CREEPY similar our boys are to the study. He agreed we needed to keep the boys on the fish oil that was recommended years ago since it's just healthy in general and we don't eat fish in the house.
Is it possible that children who have these gut/apraxia/allergy issues just need this extra BOOST to process things better? The study makes it clear that obviously a child needs extreme speech therapy intervention, but this was just a focus on the scientific part that could help the issue.

So let me have your opinions! I always appreciate my readers thoughtful and respectful thoughts.

As for now, I picked up the boy's old DHA fish oil supplement that was recommended and approved by their doctor in the past. Brady thinks it's a treat, so it's simple to give. I will drop off the study to their doctor to ask about vitamin E since I'm not comfortable giving supplements without the supervision of a doctor.  Not to mention there already is SOME extra vitamin E in the fish oil.
I know the boys get sugar and gluten from home, but I'm not sure how much we'd be changing all that since we already make pretty decent food choices for the boys. Well, it's all worth a look, hey?

In other news, Jax started on some heavier texture in feeding therapy today. We put graham cracker crumbs in his pudding and I've been making his puree's pretty thick. Slow and steady wins the race! 

Tuesday, June 12, 2012

Apraxia diet advice?

I brought the boys to the chiropractor yesterday hoping an adjustment would help with Brady's teeth grinding and of course their colds. They are both much better today and slept perfect last night, so who knows, maybe it really does the trick.
I on the other hand am still miserable. I swear illness hits the adults worse than the kids, but what do ya do? You forge through. And let your kids play with water colors as much as they want.

When Jason came home from work yesterday, he put a shopping bag on the counter. Brady looked in it and said, "Whu tha?"... oh my gosh, he said a spontaneous TWO WORD phrase! He has never done that yet. Jason was stunned and yelled to me in excitement.

A friend of mine thinks it may have to do with the "fever word explosion" that kids on the autism spectrum experience ( since my guys seem to have Appraxia of Speech which is also a neurological speech disorder along the same lines as what children with Austim experience. Interesting, huh? :: I'm referencing a similarity that this disorder shares with my children's disorder, not that I or anyone believes that an actual spectrum disorder is in play here::

I also want to start looking into dietary research for kids who suffer from apraxia of speech. I've heard of GAPS, is there anything else or anyone with experience or opinions? I've noticed a large identity between the gut and neurological disorders. My guys have so many similar symptoms to things I read about, so I thought it wouldn't hurt to start researching things that could help with their development now that we're getting a nice handle on medical.
Some symptoms that seem to relate in some research to speech apraxia (not that each of my guys have all of these, but one or both have been in the past or currently are affected):
Ezcema (Brady)
GERD (both boys, Brady resolved by end of infancy)
Feeding disorder (Jax)
Intestinal Malabsorption (Jax)
Delayed milestones (fine and gross motor, cognitive and of course speech) (both boys)
Asthma (Jax)
Fructose malabsorption (we limit fake sugars) (both boys)
Low immunization tithers (Jax)
Heat intolerance (Jax)
Low muscle tone (Jax)

I try to feed the boys as natural as possible (not necessarily organic), but their diet does consist of dairy, gluten and real sugar, and that all seems like it's a no-no from what I'm reading. There seems to be a LARGE connection between diet and behavior - any experience out there? Ha, I'm not sure what the heck I could feed them if I had to cut all the above out! I've been avoiding fake sugar and have noticed a marked GI improvement in both boys over the past year. Any experience with special diets would be appreciated!

Sunday, June 10, 2012

Spoke too soon...

So Brady's fever downgraded to a temp around 99-100, but it hovered and stayed there. I started feeling "off" on Friday, and that night Jax puked a t.i.n.y. bit of food up at the end of his pump-feeding. He had an amazing day of eating, but I was still giving him larger night-feeds trying to make up for the days prior - I felt so bad thinking I overfed him, but it may have been his "sicky whisperer" in affect. (he has not puked at all since)

Fast forward to Saturday night, and Brady was up all night crying, and I felt super sick myself. I finally grabbed Brady and brought him in our room since our "rub his back" moments weren't doing the trick. Jason went into the guest room to try and get a couple hours of sleep since we had an early morning family function to attend to Sunday.
Brady slept fine in bed by me, so that was better, but I was on the bathroom floor for awhile feeling sick to my stomach.
Today, it's clear that Brady and I are just downright sick, so we had to stay behind as Jason brought Jax with him home to attend mass and celebrate Father Dick's 40th anniversary. Brady and I had some good cuddles and time together wiping noses and saying "bless you" constantly.
By the time Jason got back in the car to drive home, Jax fell asleep (never a good sign) and came home coughing with a runny nose. Ack, we've been hit!
Other than sleepy, the boys are acting pretty normal - just a good old cold! Isn't it supposed to be summer??

Edit to add: There's one positive that came out of this cold - Jax just took his first dose of Tylenol by MOUTH tonight. Yay for progress!

Friday, June 8, 2012

Successful little bug

The boy's fevers are gone. Brady started one about half a day after Jax. The great news? Jax never puked! This is the first time he's had a bug in his system, including a high fever, and he never puked. Now, of course I pulled his food back so he wasn't pushed, but he didn't even have a problem with the large feeds through his pump at night - so success!
I call this growth!
The not-cool news is that Jax apparently didn't like to have the yucko poo in his diaper on Wednesday morning and took the opportunity to take it off in the living room, while I was cuddling Brady upstairs (who was feverish at the time... at 6am). Yeah, it's never fun to see your kid walk in your room without any pants or diaper on and yell "POO". When I asked him if he wanted to sit on the potty and go, he said, "No, poo!"... oh Lord, what did you do?
Yeah, it was e.v.e.r.y.w.h.e.r.e downstairs. ::sigh:: Give me strength...

Many talks of the potty have been occurring in the past 24 hours. Most of those "talks" are still not being absorbed by the looks on their faces!

Ce la vie. The weekend looks hot and sunny - we'll have our sunblock and sprinkler out, enjoy!

** The toy drive has collected 45 toys - Amazing!! The generosity and thoughtfulness is very felt! **

Tuesday, June 5, 2012

Last day of school

Today was the boy's last day of school. Jaxon celebrated his birthday, so I sent along fun little pails of fun including a snack pack pudding for the kid's snack. Miss Sue said it was perfect because all the kids think of Jax when they see pudding. Jax was pretty pumped that he finally got to wear the birthday crown.

Brady had his last speech session with his school therapist, and both boys will start their summer speech classes through the district on June 25. Every Monday and Wednesday they each go separately for 30 minutes. I think I'll play on the school playground with one while the other is in. The kids also see their private speech therapist weekly as well, so they're pretty covered over the summer.

I had lost my phone yesterday at some point running an errand at Target with the boys. Of course I didn't have the "Find My Phone" app downloaded on it, or have my info backed up, which is all ironic given a conversation I had over the weekend about the app. I got a new phone today, so please text me your numbers!
The babysitter came for an hour today, and since I was all caught up on my work, I ran to AT&T to get a new phone and even voted. It's amazing what you can get done so quickly when not lugging two 3 year olds along!
When I got home, Jax was SLEEPING on the couch. (huh?) The sitter said they were outside playing and when they had to go in, Jax was hysterical. She got him inside and he laid down and closed his eyes. I came home about 5 minutes later and told her that it was highly abnormal for Jax to do that, so I was suspicious that he was sick. I then thought back to lunch time today, which was also abnormal because Jax REFUSED to drink his milk. I had to send him into time out repeatedly and it was just so exhausting going through the steps to get him to drink it. He finally did, but it was just way more pushing than we usually have to do.

Jax suddenly woke up and started crying that he wanted to go outside. I told him I was going to make dinner and he started sobbing. What the heck? Sure enough, he had a high fever (101.8) and was just not making sense. I quickly fed Brady and put them both in the tub. I asked Jax if he would take any medicine to feel better and he gave me the look of death, so I decided to not fight him and put Tylenol through his tube. I put him to bed at 6:15pm and gave him a slow pump, but put extra food in it to make up for dinner.
I decided tonight was not the night to try and break any records with the tube. I hate fevers and just want to make them go away!

Brady with Miss Shari and the "mama monkey" (can you tell which sounds he is working on?)

Jaxon with his speech therapist, teacher's aide and Miss Sue!

Sunday, June 3, 2012

Up north fun, and down home pains

We headed north to the Garber Cottage for the weekend. We arrived just in time for dinner and to get the kids in bed. We put the boy's little tents in a large room where little Layla slept on a toddler bed. The three kids had a camp out. At first it was a little wild, but they all slept great after about an hour. The second night was fabulous without a peep from the room, and we put them to bed at 7pm, how great is that for three 3 yr olds?
The day was a bit windy/rainy on Saturday, so it was a very lazy day, but we still managed some fishing from the dock, rides on the 4 wheeler and a nice little walk.  Today was beautiful. We went on a boat ride, did some fishing and basically let the kids play in the water on the slide. It was nice to get away!

Ah yes, and there's another rash. Brady was itching during the car ride home. He has a rash all over his stomach and most of the trunk of his body (sigh). We gave the boys a bath, put Brady's prescription eczema cream on him, and even gave a teaspoon of Benadryl to help him stop itching to fall asleep. We assumed he brushed up against something while swimming in the lake, but it just didn't make sense. We even used soap from home for his bath last night. AH, then we realized it may be the towels he used from the bath and after being in the lake. OR it could be from his life vest when he didn't have a shirt on. Can someone get rashes from life vests??
So I'm hoping the rash goes down by tomorrow and that's the end of it. Seriously, I don't know how people who have kids with food allergies do it, because this is just simple,very avoidable skin sensitivity. So it would make a lot of sense if that was the cause, so let's hope it is because I like easy fixes!

When we came home, there was an amazing pile of boxes for the toy drive, AWESOME! There are very few boxes that have the sender's names on the receipt, so please take this as a THANK YOU a million times! We're up to 36 toys, so amazing. Jason and I organized them and hid them for the time being and I must say, I'm so impressed with the generosity.

I forgot my camera this weekend (I know, the horror!), but Sidney took tons of photos with her nice camera, so there are some great shots!
I do have these lovely photos... let's look at fun (read sarcastically) things to spend money on:

Large patches of peeling paint from your cedar siding.
Lovely peeling gutters and downspouts.

Does it get prettier?
We have one large patch of our house that gets beat on from the sun, so the paint on just this one part has peeled, and the boards have warped. We need to replace this section and hope the boards last another 25 years. We repainted the entire house 5 years ago, and it still looks great except this one part.
We had to have the gutters and downspouts painted because they were an odd color that went with the original red color of the house. They are totally done and need to be completely replaced. Thankfully the new ones come in white, so we will never have to touch them again.
But man... gutters and downspouts... what an unfulfilling way to spend money right? Like say, a kitchen, living room or bedroom would be so much prettier to look at with money spent on. Can I get a witness? Yup, the joys of home-ownership and a savings account!

Here are fun cottage photos:

The kids after their bath and ready for a bedtime story!


Big B

Jax and Macy on a date

Jax looks like a little elf

Brady is concentrating on a fish

Jason fishing with the kiddos

Too cute to not share! (Miss Layla)

Livin' the dream boys!

Sidney started the bath water and they all jumped in!

The "fishing boat" on Saturday afternoon.

Love them Garbers!