Tuesday, July 31, 2012

Toy Donation Complete!

We delivered all 185 toys to the hospital today, and it was awesome! They weren't expecting so many toys, so we loaded them inside the main lobby, took a photo and then had to figure out what to do from there. They decided to put half the toys in storage for the Feeding Team to pull from as needed, and we took the other half up to the clinic floor to deliver to the staff and grab a photo. Well Jax's entire team from the inpatient stay came as well as his typical team - Feeding Psychologists, dieticians, nurses and even the head of the department. Even his old nurse who he used to see when he was only in the GI clinic - this woman counseled me through many tearful and fearful phone calls during Jax's first two years.
They were all SO thrilled and grateful. These toys will help them a lot with kids going through the process. It seems best that the smaller toys will be used during the inpatient process, and then the larger toys will go to kids finishing the program, and also for any children on surgery day who get their tubes removed (awwwe).
We unloaded all the toys into a room on their floor and everyone gave me a hug. After I said, "thank you for teaching Jax how to eat" I had tears... it's such an amazing program giving kids a chance at life.
So thank you... thank you all a MILLION times over for your generosity and thoughtfulness while contributing to such a successful cause!

The boys helping me count and repack all the toys so they're secure for the ride.

On our way!

Monday, July 30, 2012

Baseball weekend for the boys

We were at Jason's hometown tournament (Kenny's tournament) this weekend and the boys had so much fun playing with their cousins and all the other kids at the park. Enjoy the photos!

Jax got into the stampers...

The boys thought it was cool that I was painting my toe nails and pointed at their own feet. So I put some Super Hero blue on their big toes. They think it's pretty cool!

Baby Drew hangin' with the big boys!

A pile of boy cousins! Drew, Eric, Aidan, Kyle, Jax and Brady. Jax looks so tiny on a college football player's lap!

The boys playing ball with Uncle Joe and Jason.

I love catching moments like this!

Friday, July 27, 2012

Party Pics!

They're here and they show you the day! I will have fun making a photo book and creating a new blog header with these, yay - Enjoy!

Carnival of Hope Photos

Wednesday, July 25, 2012

Road Trip Birthday Party!

We've had a quiet week so far. I took the boys up to Green Bay on Tuesday for Layla's birthday lunch at Chuckee Cheese. The boys had an absolute blast and it was fun to spend the afternoon with the Garber/Freemore clan. We stopped at Nana Jayne's for an hour after on the way home. The boys played with the coveted box of "Nana's house toys" and the cat and dog were spoiled with plenty of treats.
On the way home, Jax kept yelling "MMDannos!!" Wow, that's some great marketing when a child with a severe feeding disorder wants your food. Well... ok, the toy. So we stopped half way home and got a couple of Happy Meals that Brady and I ate and the boys got some entertainment from the toys. What a TREAT of a day for them!

Macy and Jax cruisin' on a date.

Jax saw all the kids doing story time with the mouse and he RAN up to him for a hug and high five right in the middle of the story. Yes... my kids LOVE costumed people. They would die for Disney I'm sure.

This was their favorite game/ride.

Macy and Brady took it for a spin!
The Garbers - aren't they the cutest?

Sunday, July 22, 2012

Getting 'er done

How and why are we so busy? Do you ever feel like you scratch off a few "to-do's" only to see a ton more to follow? Ahh, such is life, hey!

I have a Urology appointment set for the boys on August 3rd. They won't have their hearing and vision checked until October. Since they aren't having any known "problems" and just getting check ups, it's quite the long wait for each appointment - which is fine. I want to focus on their Urology appointment and also getting Jax's immunization testing done in the month of August.

We took the boys to Toys R Us to buy the final toys for toy drive with the donated money. They were really good about knowing the toys we bought were to go into the trailer for the kids at the hospital. I was really hoping to get a toy count today, but it's way too hot to stand in the garage that long and sort through them, so that will have to be a project for when the temperature comes down over the next week - but there are tons and that makes me so happy.
A few toys have been coming in this week, and this next week will be the final collection for donation on July 31st. Everyone has been so generous!

I found this picture on my camera. This was our living room last Monday when they were sick. Thankfully it was only one day! Notice they both have a light saber.


Wednesday, July 18, 2012

4 yr physical and tons of info

I meant to update yesterday, but I've been sick, bleck. So I apologize for the extremely LONG post with so much info. The boys woke up at 5:30am on Monday vomiting profusely (so Jax's sicky whisperer tummy was spot on Sunday). The boys got better through the day and all was better. Until last night when I got violently ill for many hours into the night. I always find it interesting that when I catch the boy's GI virus', it's so much worse. Is it because I'm an adult? What gives?

So today was the boy's last day of summer school speech. We'll miss Miss Trish and her adventures. Her final report to go to the therapist in the fall said that Brady was a hesitant talker, perhaps because it is so difficult for him (his confidence is starting to get damaged knowing people can't understand him) however, when the activity is very exciting and/or includes a motor component, he can't help but express himself verbally :)
Part of Jaxon's report stated that he has intelligibility to be approximately 85% for single words and 65-70% for 2-3 word utterances. Listeners do continue to remain dependent on the context of Jax's language in order to understand him though. I asked why Brady's report didn't have "statistics" and she said the Brady's vocabulary wasn't far enough along to measure yet... but it will. She's always so positive. She described the boys in her report as personable, energetic, happy and cooperative little boys. Who could ask for more? Love them.
Brady's speech therapy with Mr Nick has been denied, so now he has no coverage until school starts in 8 weeks - ummm, not cool.

The boys had their 4 yr old physicals today. The doctor's office called this morning and asked us to come in 30 minutes earlier since there was so much to discuss, and wow, we had a 2 hour appointment.
First thing, I'll share their stats:

Brady - height 38 1/4" (10%) weight 29lbs (3%)
The doc agreed that he may have dropped up to a pound in the last two days with his illness on Monday, but that would only bump him to the 5% range.
She said he's following his curve since birth nicely and to keep giving him his Pediasure bedtime snack, but otherwise there's no concern for his physical growth, he looked great and is just a small guy - always has been!

Jaxon - height 36 1/2", weight 25lbs
Obviously Jax is not on the charts, but the doctor did say his height-to-weight ratio isn't "too far off" like the GI doc said as well. Obviously we'd all like to see him gain a few more lbs. She said his height may not be indicative to his long medical challenges, but rather he's just meant to be very short. I thought Brady had an extreme growth spurt, but it turns out, Jax just didn't grow much, so it just seemed like it. Doc doesn't think there's a genetic "issue" with Jax's height either which is a good 2nd opinion to have - because he's preeetty short.
So I wonder if Brady will always be so much taller? Time will tell, but they've definitely pulled apart this year. I was an extremely short kid until high school. I was only 5' tall freshman year and got up to 5'6" by senior year. I have remained scrawny my whole life though. I think Jay's family said he was pretty small as a child too, and he's a normal sized adult (5'10" 175lbs), so I guess we'll see with time!

The boys got their 4 yr old booster shots. Jax got an extra one (Pneumococcal) to make up for the one he was showing a resistance to when tested (which is ironically pneumonia related). He'll get a blood test to see if this one sticks the next time we're at the hospital in August for a check in with the dietician and feeding psychologist. Fingers crossed the results are normal and we can be done with that.

We had a long discussion about the research paper I dropped off to the doc last month about supplements (fish oil and a high dose of vitamin E) helping the neuro area of the brain with Speech Apraxia. She said she researched every area she could think of (Neurologist, Developmental Pediatrician, Pharmacy and other colleagues) only to come up with the answer that it needs to be researched more, and that the dose the paper calls for is extremely and dangerously high. She said the monitoring that the boys would need at that high level would be pretty extreme and she's not willing to put them through that without better/more research showing that it would be worth it. So she came to a dosage of 300mg daily that she'd be comfortable, but I would need to review their diet and see how much they currently get. So I'll need to do a little leg work and figure that all out. But she encourages their continued use of the fish oil which is very safe with multiple benefits.

Here are the parts of the appointment that surprised me. The boys need to see a Urologist. When the doc was checking their genitals, they each were extremely squeamish. I told her that they have always been that way when wiping the penis area with a wipe. She looked closely and said that there is typically a "slit" at the end of the urethra where urine comes out of. The boys each have 2 holes, like there's a small piece of flesh between them instead of a full slit - it's called Meatal Stenosis. She doesn't know if that has anything to do with their squeamish behavior when having the area wiped, or contribution to potty training issues (although she thinks they're just not ready) but she'd like a specialist to review to make sure everything is ok. She first asked us if their urine stream was angled. We laughed saying that would mean they'd have to pee without a diaper on!

Which lead us to the conversation of potty training. She wants us to continue keeping them interested in the potty and inviting them in and everything. I asked if I should be "pushing it more" and she said it's not possible. If the boys just don't understand how their body works and relate it to the potty, they will never just get it until their bodies are ready. She has no fear that they won't, they just need time and we should never associate punishment with it.

The boys need to see the Ophthalmologist and get a hearing screen again. Since the boys have such a speech issue, the nurse couldn't get an accurate test for either. The doc wants to rule these issues out again given the speech disorder continuing. I told her I hate getting my hopes up that there's a way to "fix" their speech without years of intensive therapy...

The doc faxed in a Rx for Jax to get a new pair of braces fit, so hopefully the ball gets rolling on that whole process soon. I think it takes 2 full months, and he's eligible through his insurance in October, so I'm glad the first part is out of the way.
We had a talk about Jax's "Chronic Lung Disease" and how it is now officially "Asthma" that will most likely be a part of his life forever. Although, his daily inhaled preventative has done amazing things for him since January, so I think he will have a lot less problems this winter. Jax is in the Asthma Program through the doc's office, so his monitoring should go pretty good.

Sunday, July 15, 2012

They're 4 and we couldn't be more blessed!

My babies are 4 years old, it's crazy!
The party turned out fabulous. The weather gave us a bit of a scare in the morning with rain clouds, which pushed back set-up about 90 minutes, so I was slightly stressed out. Thankfully we had help from some family (thank you Colliers and Nana!) to get it all out on time. Once it was all set up, we had a few moments to sneak to the side with the photographer and grab a few photos before the insanity started. Once I receive the photos from our photo-guru, Mike, I'll post them up, I'm SO excited to see them!

The day was HOT, but it was amazing. There were awesome bouncies set up, a wonderful face painter and lots of yummy carnival food. There was a steady flow of people (I think we estimated 100) and the donation trailer is full! We need to go through everything and count it out, but we'll be taking the kids to Toys R Us to purchase more toys with the donated money from the party. Final donation is on July 31 for anyone wanting to get any last toys in.

I had the biggest surprise EVER from Brook and Jake showing up with their twin baby girls. They're from Indianapolis and drove up to give some love and support. My long time blog readers may remember Brook from the blog "Sweet Girlies". I've had a few readers message me over the past few years asking for an update with her, and I'm proud to say that I held and loved up on their 11 week old baby girls yesterday and I soaked up every single moment of their sweetness! I'm so blessed to have their support at such an amazing celebration. They are truly some amazing people to know, and their girlies have always been angels helping us throughout our struggles. I Love these people.

The boys definitely need to catch up on some sleep. There have been no naps, early rising mornings and long days. They went to bed a bit early tonight, so I'm hoping they'll catch up a little. Jax's tummy did not like a lot of food today and he threw up half way through breakfast and then again at lunch. He's either coming down with something, or his system is just worked over. He's acting fine and has no symptoms of illness, so we'll see if he just needs to catch up on some normalcy. I gave him two small snacks later in the day and he's hooked up to his night pump now snoozing away (with a Star Wars figurine in clutch).

I measured the boys on a growth chart that I put up in their new room. If I measured properly (you know, having them stand against the wall and marking the chart) it seems like Brady may possibly be well over 2" taller - he really pulled away since the holidays last winter. Maybe Jaxie will have a growth spurt soon too. We'll see how they really measure up with their big 4 year old physical on Wednesday. Hopefully Jax will hold his immunizations this time - more talk about that after we see the doc on Wednesday.

So, today was a lot of cleaning up, taking down, organizing and storing. Our neighbors asked us to come over for breakfast this morning. They had a bunch of their friends stay over from the party yesterday (a large group of people who we hang out with and our kids all play together). Well it turned out they had quite the surprise for the boys... they all chipped in and got the boys a Power Wheels Jeep - OH MY GOSH! They remembered that the boys used to use their old one (which was second generation already to them) and it broke last year. They loved riding around between our three yards. So the boys got a new one, what lucky little guys! We have such thoughtful friends.

I see we're back to HOT weather again for a few days, so we'll have to figure out how to not go stir crazy. This is the boy's last week of summer school speech, so we'll be soaking each minute of that this week while I try to figure things out with Brady's insurance since it has cut off his sessions with our private therapist Mr Nick. (sigh) always something! I don't like the idea of Brady not having any therapy between next week and school starting, so I'll have to figure something out. We always do!

I caught a party shot of some final pinata time!

Apparently Brady wanted to re-paint his face. Himself. With a stamper.

The boys getting their Arctic Cat Power Wheels this morning!

Wednesday, July 11, 2012

Final count down

The week is going well with speech therapy and a lot of playing outside. I'm definitely hearing some different sounds and words from the boys. They are learning about "camping" in their class with "hot fire" and "seeing stars". And of course, both boys are working hard on MMM- AAA. Jaxon's sound comes out as BA and Brady's comes out as GA, so Brady has always called me "gaga" but Jax has always called me "ahda". Well today Jax called me "baba" which is closer to mama, so that was kinda neat knowing he's thinking more about it when saying it!

I received Jax's chew tools to work on chewing at home. I'll be bringing them to his feeding therapy session tomorrow to have Mr Nick show me how to exactly use them. A whole new world with all of this.
Jax seems to be fine with his new chocolate formula to drink during the day. I've noticed his volume intake has gone up this week with an extra 2-4oz a day total. He's on the right track!

Lots of party-prepping is going on with final details and scheduled deliveries/set up. I just need to finish a monster project for work and get this house in shape - I'm really excited for the party and can NOT believe that these little men will only be 3 years old for another 48 hours.

Sunday, July 8, 2012

Big Boy Room and a little lady on the way!

(Sorry the video is so dark, I shouldn't have stood directly in front of the patio door, boo!)

It's a girl for Rachel and Dennis! Yay, congrats!! They had a "reveal party" with cupcakes that had the color pink inside to show the gender is a GIRL. They had the doctor put the gender in a sealed envelope which they gave to a baker to fill cupcakes with the appropriate color.
It was a special small get together, but oh so cute. Rachel and Dennis are from Niagra, WI, so they had cupcakes delivered to a group of family that got together and everyone took a bite at the same time, adorable!
I owe this little girl a bit of babysitting, ya think? Baby girl comes at the end of November, I can't wait!

We made the boys their "big boy bedroom" this week and they've been doing great. Jax gets a little confused sometimes since his toddler bed is still set up in the spare room, but both the boys have loved their new beds. We're so fortunate that they haven't gotten out of their beds until they wake up in the morning and so far there hasn't been much jabber between them. It has taken four years, so I'm happy to finally see a bed under the big "J" on the wall!

This week has been full of cleaning out the baby things and cleaning up the yard. The heat is coming down thankfully, but I see on the extended forecast that it's supposed to creep back up - I hope it's not too hot for the party next weekend, fingers crossed.

We met our friends Janel and Steve for dinner on Thursday night and even the restaurant's air conditioning couldn't keep up. We're really over all these 100+ temps. Anyway, we made the final plans with them for the party, and then Jay and I had dinner at the neighbor's house Friday night to finalize things with them as well - it's all coming together!
Everything is set with Child Life Services for the donation at the end of the month and I even got Jax's formula/milk situation figured out between the dietitian and our medical supply company. I have to add cream to the chocolate Pediasure we're getting, but if he likes it, it will make life so much easier for us! I'll find out pretty quick tomorrow I guess!



Tuesday, July 3, 2012

Feeding Team update and other tidbits

The last two days have just gotten away from me, we've been busy! I apologize for such a long post!!

Monday morning was Jax's full Feeding Team appointment and I was so pleased to see that he gained an entire POUND, yes he's up to 25 lbs! He had two illnesses in the last six weeks where we pulled his food volume back, and he still championed through. He still needs his full can of Pediasure through the tube at night, but he is definitely moving along better with weight gain. He will need to figure out how to get those 360 calories through his mouth throughout the day in order to pull back on the tube at night. The docs all said it will come with time. I'm in the middle of figuring out a formula through the medical supply company and the dietician to figure out something different. Jax can't drink the Pediasure that he gets through his tube because of vomiting it up so much. I make his formula with whole milk and a whole lot of Instant Carnation Breakfast. I am flying through it like crazy, and he seems to be getting sick of it. We're trying to match up a flavored pediatric drink that is 1.5 cal (360 calories per 8oz) to drink.

The feeding therapist did a session with Jax to see if he was ready for chewing. She presented him fine cookie crumbs on a spoon (and I CRINGED) and sure enough, he panicked, gagged and vomited all over himself. We cleaned him up (sort of) and he sat like a good boy and took the next spoon of crumbs. And when I say spoon of crumbs, I mean a few crumbs on the end of a tiny spoon.
Jax stuck his tongue out with the crumbs on it and pointed to it with a small amount of anxiety... as to tell us "LOOK AT WHAT IS ON MY TONGUE"!

When he realized we weren't going to save him like I do if solid food ends up in his mouth, he gagged through it and kept them down. He did it two more times and we all cheered. The doc said he is ready to start chewing-therapy with our weekly therapist (Mr Nick). He'll start using chew-toys as I like to call them, that are dipped in crumbs and put into the back of his teeth which should prompt him to chew and swallow. We'll see how all this goes over. I really think Jax's calorie/food intake would be so much better if he could eat/chew more solid food.

The GI specialist said Jax looks great. He's of course skinny, but he's playing catch up with gaining 9 grams per day when the age appropriate daily gain is 5 grams. The doc and nurse counseled over what to do about the tissue sticking out of Jax's stoma site. They did a round of silver nitrate and sent some home with me and some directions of what to do over the next two weeks. I hope it works! It's quite the mess of blood with these treatments.

The specialist doesn't need to see Jax for... six months. Say what now?? Right? He said that Jax should be presenting as a new little man then. He told the boys Happy Birthday and bent down by Jax and said, "I'm rather sure this is your last birthday with that tube".

So the feeding psychologist and dietitian will see Jax in about 7 weeks to stay on track, but I did the math for the GI doc (who will be making the final decision and doing the final surgery to end all of this). Jax would have the next four months to gain and intake the necessary calories by mouth and then 2 full months of final non-tube trial. I actually like this goal and it feels attainable and not pushing Jax. That would be an amazing end to the year.

After the appointment, we rushed over to speech therapy with Miss Trish. Thank goodness I had a change of clothes for Jax in the truck or we wouldn't have made it on time. The boys made fire cracker hats and soaked up all of Miss Trish's positive energy. She is always smiling and has taken to the boys very quickly.

In other news, I received a phone call from the pediatrician's office relaying a message to me that our doctor was researching the paper I left for her about the fish oil and vitamin E helping to stimulate the neurological defect area for apraxia and gut/allergy issues. The receptionist said that the doctor wanted all possible information to have the most informed conversation possible and she'll be calling next week. I love our doctor, she's always been involved with every detail and has never let us down. I look forward to her input and advice on the matter.

We actually got a little bit of rain this morning. Today was hot, humid and just gross all around. I took the boys to see a matinee around 10am, and they of course loved it. We saw Madagascar 3 (not that they've seen either of the first two) and they think the penguins are the coolest things ever. I wanted to see Brave, but there wasn't a morning showing and I've been waiting to hear from others if my almost 4 year olds would like it.
Lindsey came for 2 hours today so I could get some work done, and she took the boys to an indoor bounce house where they came home sweating, smiling and full of stickers - lucky boys today!

I also have been in touch with "Child Life Services" from Children's Hospital about the toy drive that we're doing. We're setting up a time with the Feeding Team for the official donation and a photo with the boys. I think it will be the last Tuesday in July since that seems to be the only day coordinating between the hospital and Jason's crazy schedule. This will give time for anything trickling in too. We're up to 61 toys - how amazing?!
I've also gotten a few questions from those attending the party next weekend. The donated toys do not have to be from the Amazon wish list, that was intended to make it easiest for online donations, but you can of course go that route. The toy needs to be new and unwrapped, and that's it!

Miss Trish and the little men!

Loving the wading pool on a hot day full of appointments yesterday!

Lindsey running through the sprinkler with the boys.

Sunday, July 1, 2012

Water fun and water woes

Ahhh, what a gorgeous weekend up north! We got up to the Garber cottage around dinner time Friday night and had an awesome time. Saturday was absolutely beautiful and we had a blast on the lake. There are two more jet skis, so we all had a blast with those new toys. Sidney and I went out during the kid's nap time and we seriously played like teenagers racing around in circles and going around the island. So fun!
After the kid's nap, we went out on the boat to do some tubing. Jason went first and once he fell off, Brady had a complete meltdown. We had to go back to the dock so I could take him off the boat, because apparently he no longer liked the water once he saw Daddy fall in it.

Well... this added to Brady's other water woe, which is the bathtub lately. He's always had a fear of the shower turning on while he's in the tub ever since it happened once awhile ago. It even happened at the cottage once, so you can better believe he was on HIGH alert during bath time. Well... if you call him screaming and crying while I quickly forced him in the tub and washed him up while the other three kids were having a great old time playing in it.
Even tonight at home, Brady was TERRIFIED of the bath. He was quite hysterical while we made him at least stand in the tub while washing him quickly.  He sobbed in complete fear.

So... what do we do? My first instinct was to call our pediatrician and ask her advice, but the boy's have their 4 year old physicals in 2.5 weeks. Do I wait and address this new extreme phobia then? I think I'll try to give the boys a bath in our master bath since it's separate from the shower and see if that helps, but.. um, shouldn't he be able to bathe in a shower/tub at some point? Anyone have any experience with this?

Well, we got home early today to take care of the lawn (ohhh it got some much needed sprinkler time!), laundry and I'm about to dive into some piled up work before this new week starts. Jax has his big GI/Feeding team check-in tomorrow first thing in the morning at Children's Hospital, and then we go directly to speech therapy. I'll update tomorrow night how the appointment goes, but I have a strong feeling I know that it will go exactly how the last one went. I'm hoping to see Jax gained a little weight, but I can tell he didn't gain anything substantial enough to change our current course. So I'm geared up emotionally to hear that! He's happy, healthy and running around like a crazy (skinny) kid so I can't ask for much more than that, right?