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!