Hope

Hope

Monday, May 23, 2016

Back to reality!

We're BACK!

We had a wonderful trip and it was worth the chaos that ensured the days leading up to take off. I felt better within a day of getting to the island, but Jay and I made the mistake of not wearing enough sunblock on a cloudy day of moped along the west coast of the island. We were SO sunburnt on our backs that it was embarrassing to start the conference like that, OOPS! Oh well, we had an amazing time, and I did pretty good with being away from the boys since I had such great daily updates and face time with the boys. I had that "yearning" for them on day 5, but I did ok.
The boys themselves had a GREAT time while were gone too. They really missed us but didn't miss a beat while we were gone. It's good for all of us to have these breaks, but the boys were sure to make sure they're along for the next trip ;)

The boys had some baseball, photos and swimming while we were gone, along with their regular school schedule and everything went smooth and fabulous. The only hiccup I heard for Miss Gina was that Jax's pump extension came apart from the tubing the first night and she said that Brady jumped out of bed and started to offer help and guidance on how to clean Jax up with getting him new pj pants and wipes to clean up the floor. Miss Gina got tears in her eyes describing the scene and said how amazing of a kid Brady is. Omg, he really is. He's been asking for directions to run Jax's pump lately, so we let him prime it while we get them ready for bed. He's such a care taker.
Otherwise, the week went great and I'm so thankful for that!!

This is the last full week of school for the boys since next week is Memorial Day and the following week they end on a Wednesday, so these little dudes are almost done! I'm quickly preparing for that circus ;)


This was the scene of the boy's first game the night before we left - it was HORRIBLE outside!

Opening ceremonies with the other agent from Wisconsin that qualified. Love the Brinkmanns!

Lahaina


Pictures don't do this party justice

I didn't get photos of the fire breathers since I was so mesmerized by the show!

Oh these little girls!



Mopeds!
Polo match!

Our Bed and Breakfast place the weekend before the conference began. We wanted non-resort for this portion and it was perfect.

The boys picked us up at the airport and carried our bags, ha, the reason to have kids!
I love ornaments as souvenirs.
I thought these two looks like two peas in a pod right here after church 
Miss Gina sent me constant updates of the boys and here they were before their game when we were gone. They both scored and did well!
It's amazing how long a child can play with a simple ball!


Thursday, May 12, 2016

Spring sickie

We've hit a spring cold, ugh and YUCK.
We let the boys play outside past their bedtime the past two weekends and I've noticed it really dipped Jax's immune system. He had a tiny cold last week, and then it blew up this week, so I had to bring him in to get a lung check on Monday to be sure it was a new cold and not him unable to keep up with his first one (the difference between a typical child and child with lung disease I tell ya!). He sounded great and no fever, so we assume it's a new one. Well, he decided to cough directly into my face (and in my MOUTH) and sure enough.... here I am with the same nasty cold and about to leave on a trip... first world problems, I know, but it stinks.

We're pretty set to jet off to Maui and the boys are really excited for their babysitters with their whole list of activities. Jax just gets extra breathing treatments while at school and home and he's kicking it pretty well. I, as usual, am miserable and am trying to figure out how I'm going to handle the all-day flight on Saturday and not feel worse while sitting in paradise. But, I'll figure it out ;)
Jay and I are attending the Blue Chip Conference through Mass Mutual. It will be lovely to go back to the island - we were there for our honeymoon almost 9 years ago.

Anyway, since the last update, Jay has turned 35, finally, and the boys are getting pumped up for summer coming around the corner. They want to call themselves 2nd graders so bad! They've gotten pretty funny lately with their personalities maturing and their vocabulary expanding. They say the funniest things lately! Our nights lately have become a small spelling bee. The boys each have a list of 6 words each week (of course different testing days) so each night and morning we're always reviewing words. It's pretty cute how serious they take it. All perfect scores so far and I fear the day one of them don't since it will probably entail some ribbing!
Otherwise, the boys are supposed to have their first baseball game tomorrow night, which is looking like rain, so we'll see, but they're pretty anxious to start that season up!

I'll check in when we're back, aloha!



I guess Leroy Butler came to the boy's school for the 4th graders and on his way out saw Jax in the hall with his speech therapist. They took a pic together - random and cool!

Last weekend's weather was beautiful!


Birthday!

More nice weather


I came downstairs to this wonderful pile of awesome. Starbucks, donuts, flowers, gifts, smiling faces - fantastic!

Papa teaching the boys how to do a Wisconsin handshake (milking utters!)
Mothers Day brunch
  
More outside

My dudes...


Thursday, April 28, 2016

Less 'roids!

We've been enjoying the wonderful warm and sunny weekends, and now we're back to Wisconsin weather this week, so BOO on that.

I've been trying to get the boy's summer schedule set, and so far we're pretty set until mid July. I'm trying to decide if I find something to 'schedule' or just have us do random summer-things for those last 6 weeks. I've had this very real realization lately that their childhood is fleeting and I'm trying to soak it up before I blink. I find myself stopping and asking for a smooch, a hug, a snuggle, ANYTHING since I know they'll still do it.

The boys had off school on Monday, so we had fun around town. We started with Jax's asthma specialist (so fun, right?!) which we hadn't seen in 10 months (doc kept refilling the meds like a nice guy). The appointment was great. We've decided to cut Jax's daily preventative inhaler in half in hopes his lungs can keep up and he'll get even less 'roids. We cut them in half last year and it's really helping him grow to not have them. We hope it makes him less spacey/hyper as well, so it can help if we can keep coming down in this daily med. We have a protocol in place for hot days and our fingers crossed it can remain on the upswing! Love it! (and I promised and already scheduled an appointment for October to review the dosage before the next cold/flu season)

Oddly, while we were there, we saw my OB-GYN doctor and nurse and found out it was her last day. O..M...G... this team has seem me through it all over the past 10 years! The doc hasn't seen the boys since they were babies so she was so happy to see them and take a photo. They are her only set of living mono/mono twins... isn't that CRAZY?? So anyway, we all cried and they filled the boys with candy. Now I have no idea who I will see going forward or who my new drug dealer will be, (ha, you have to laugh) but I guess I'll find out next year. (tear)

The boys are loving baseball practice and they start games in two weeks I believe. They're also still in swimming once a week and doing well, but they still have a long way to go. There's a gym with indoor and outdoor pools opening this summer right by our house, so I'm hoping to get them even more frequent lessons when that opens. They need this so bad!

Our piggies got some new digs. They live like QUEENS

Jason giving Brady some batting tips

Jax will find anything to do rather than eat in the morning!

My doctor is retiring, WAH!

A little pie face fun

The boys typically try to get in quick baseball games with the neighbors after school now that it's warming up

I love that a simple bug can still make them stop and play with it!

Since receiving umbrellas, they must use them with any small sprinkle.

They think that wrestling ferrets are HILARIOUS. Jax had tears from laughing so hard.

Thursday, April 14, 2016

IEPs and GI followup complete!

I got some big items off the checklist for 2016 this past week. Both boys have their 2nd grade IEPs for school all set.
First I had Brady's last week, and it went pretty seamless and as expected (it's nice to have these!). He is anywhere from 50-75% intelligible to unknown listeners. They literally have him do reports and things to other teachers who don't know him throughout the year to get these stats, kinda neat. He is 75%+ intelligible to the rest of us known-listeners. His teacher said she only needs him to repeat or use context clues to figure out certain words on average once a day since she knows which letters he substitutes for other letters (like he still uses the g sound for j, etc). The only change to his IEP is the number and length of his therapy sessions. Since he's getting older and has better attention and focus, he'll get 3 days at 20 mins, instead of 5 days of 10 mins. He also has a group session, and the speech therapist works with him in the classroom during writing to help with spelling/sounds. Brady is at or above grade level for every subject, but struggles with spelling since when he sounds out sounds, he doesn't always make the correct sound and then can't figure out the letter, so that should improve with speech improvement, which is getting better each year for sure! He was suggested for summer school speech therapy again this year, which didn't surprise me - it's to help keep the skills he's learned, since he can regress on breaks.

*Interesting side note about Brady. The teacher told us that he befriended the little boy that was getting picked on, and now the boy who was being the bully has been upset and lashing out on Brady with mean comments. I guess Brady has shrugged him off and continued to play with everyone else and now the bully has been shunned. So, the school is going to have all the first graders participate in another anti-bullying program. We need to get all the kids to be friendly. Jason and I have discussed sponsoring a 'buddy bench' with the principal for the school as well. I have to admit, I'm very proud of Brady and his nice choices.

Jax's IEP was also rather smooth without many surprises. He's been doing great with the current IEP, so we replicated a lot for next year to keep him focused. He sits up front during presentations. He sits next to specific students during work time, typically on the end as well. He kept his medical pass to puke and stay in school if it's due to his tummy troubles instead of an actual illness. He has a big goal for speech, so I'm interested to see how that pans out. Sometimes I forget he has speech issues because we're always focused on Brady's so much, but if you listen to Jax talk with his peers, it always sort of stuns me how much he still has trouble.
One interesting new item for his IEP is that he'll be in a writing intervention session 3 days a week that will carry over into the classroom. It's a new program they're launching and Jax and another student in his grade will be in it, so it's nice he won't be alone. We're hoping this will really help him get a handle on his fine motor delay with writing and drawing.

Jax wrote such a nice story about our yearly trip to the lake with our friends, which a teacher had to type for him. He scored all 1st grade level on everything, except of course, the drawing and any writing he did himself. He couldn't look at what he drew or wrote and convey what he was trying to say with the pictures or words. He was sad to a kindergarten score, but we told him that is why we are doing extra intervention next year - I'm anxious to see if it helps.

Jax had his 6 month followup with the GI specialist and Feeding Team this week. It was great! His BMI is at 25% and his height and weight were both equal at 10% on the charts. He had a huge gain! (47" and 46 lbs) The GI doc and the team were all shocked. He is definitely eating better, but obviously still doesn't have the drive to eat, or eats a high volume, but he certainly drinks a lot of his protein drink. They are going to keep his tube-feeding the same and we will check in with weight/nutrition in August when we're back for the Endo-followup. They feel that the food is really FEEDING the hGH right now since he's finally having height-growth and muscle mass growth. If he continues on this path, we will start to pull portions of his tube-feeding back. It will be a long weaning-process, so I'm not going to get too excited or put any expectations on it. I will just bask in the fact that this kid is on the charts and super HEALTHY right now! Also finally going into the same pant-size as Brady! People are really starting to mix the boys up lately :)

Jax will no longer see the Feeding team now since he sees his own private therapist weekly and he doesn't require psychology-feeding services any further. So, he'll see the GI specialist and dietician going forward. The doc also mentioned going forward with the genetics test, which I wasn't sure if we'd do. He said he has one other little boy with RSS, and he also uses a g-tube and and hGH injections. Which is how you 'treat' the syndrome, so since we already do it, I wonder if we want to continue or not. I don't know, I will consider an appointment with a geneticist to at least just have the conversation.

These are all greats pieces of the story going forward for these boys!


The boys are loving our tub again.

Just a simple time between the boys. They're sure lucky to grow up with their best friend!

Trying to get ready for summer swimming

Thought I'd share a text between Jay and I...

Monday, April 4, 2016

Break is over!

Spring break is over and the boys are back to school already. I was shocked how quick the 10 days went by. I kept the boys super busy, even with the less than to be desired weather. We had such a mild winter that these constant grey rainy/snowy spring days are just never ending and depressing!
Nevertheless, the boys had 3 swimming lessons, a matinee movie, the museum, bowling, a birthday party, baseball camp and a bunch of small journeys. Oh, and Easter was in there too :)

We've got a busy couple weeks with end-of-year school meetings for the boys. Tomorrow I have Brady's IEP meeting for 2nd grade. The boys have a 'celebration of learning' presentation to show us Thursday night. They have a pizza and movie night at church on Friday (date night finally for Jay and I!) and then Jax has his IEP meeting for 2nd grade next week. I also have Jax's GI/Feeding bi-annual followup that week, which should be interesting since Jax is gaining weight so nicely.

One cute new occurrence in the house is that Brady no longer requires pull-ups at night. He's been in undies for over a month and he's pretty proud. He's been ready for awhile, but with us out of town for San Diego, I wanted to just wait until I was home. And just like that, he's done with the whole thing. His doc told me she had a feeling this would be the year for him since it's typical for boys around 8 to have the final dry streaks. It's a hormone I guess? huh.. no clue.
It's interesting to see that Jax is dry as well if his pump gets disconnected at night and he doesn't get fed. It happens about once a month. It's sad since he's SO proud on those days and I have to explain to him that he's only 'not' dry because he's fed 18oz of fluid while he's sleeping. I told him that it won't be like this forever...

Jax had a feeding therapy session at the clinic since school was out. This was great since Jax was able to have a session to work on spitting. Since starting swim lessons, Jax has shown that not only does food make him panic and puke, well, pool water also makes him choke so he swallows it since he can't physically spit! We must get this kid spitting!!
The therapist said that we've been pushing Jax to 'chew and swallow' repeatedly for YEARS and now suddenly we're asking him to hold something and push it out - it's totally foreign to his motor skills. Jax has spent a lot of time lately with his face in water blowing bubbles, using straws to blow bubbles and practicing a lot of 'trying' to spit. He has a long way to go, but we're focused on this motor skill over the summer. The therapist can't work on it at school with Jax in the lunch room in front of his friends, so we'll be doing it at the clinic this summer. I think it will really help him in a few areas. Even just having congestion in the morning, he will puke after sniffing, whereas most people understand to blow their nose or spit if necessary. Or when he panics with food in his mouth, he will puke it out rather than simply spitting the food out. So, this should really help things.




Stitches are out and healing up - smallest one so far :) It already looks much better from this photo.

The results of the Badgers losing last week. Jax was devastated.

The boys playing pool with Aidan when home for Easter.
We love a good selfie

Letter from the Bunny

Brady found his basket in the laundry hamper, ha!

They had fun searching around

During the drive, I turned around and saw this. This is Jax eating some peanuts completely on his own without being asked to - this NEVER happens!

Egg hunt at Nanas

It cracks us up how different these kids can be. Brady organized all his candy by color while Jax had a pile of everything. 

They planted garden starters.
A quick family photo that day

Getting better each week in the water (but a long way to go yet!)

My handsome grocery helpers! They love Trader Joes!

A representation of how much Jax eats. Brady's plate is on the left and Jax on the right. I took this photo for the feeding team next week and thought I'd share here as a documentation. I cut Jax's sandwich and grapes like this for easier chewing, the less work equals more volume and he still lacks the ability to handle large pieces in his mouth.

With feeding meds, he took about 3-4 bites of sandwich, 1/4 stick of cheese and 3 grapes (6 pieces cut in half) before drinking his protein shake. He also ate a smear of cookie butter which I thought would get him to eat the crackers, but he didn't want the crackers, so the butter was eaten with his finger. He's doing OK, but we still need to keep working on it so he doesn't have to get most of his nutrition/calories from his drink. (Brady's plate is just funny. No clue what he did to his sandwich on this day, usually he just eats it like a normal person!)

Bowling fun!

Dino fun at the museum!

Jax loves a cute FOX!
 
Birthday party fun for the Bonin twins!

Birthday kids!