Wednesday, June 25, 2014

Success!!

We got it!
Brady received the summer PROMPT-therapy grant, yeah! I felt like we won the mini-lottery when I checked the mail on Monday!
We're in the process of trying to get it all scheduled out. It's difficult because the boys have summer school until noon each day for the next couple of weeks and then the therapist also told us she only works 2 days a week during the summer. Oy, this is going to be tough.
She is calling the grant provider (Small Steps in Speech) to see if they'd allow her associate who is also PROMPT-trained to do 1 session a week with Brady since we want him getting 3 sessions a week.
Brady has speech 3x/week right now while in summer school (the boys are in a kindergarten-prep class), but that speech is to help him maintain his current skills. The PROMPT is a whole new way of therapy that will hopefully progress him forward a little bit. They physically move the mouth to help with motor-planning. Here is a bit about it if you're interested - PROMPT.

I also FINALLY got Jax's hGH medication figured out. It took a few more phone calls to the drug manufacturer, but they represented me by calling the pharmacy and sorting it all out. I gave them my bank account info under the promise of not touching the money until I've signed for the drugs at my door step. It all worked out thankfully.
Just when I thought I could breathe a bit from all the insurance, drug company and therapy debacles, I received a letter from our insurance stating all the charges that were coming from Jax's feeding therapy. Say WHAT?! I fought so hard for 10 covered sessions! At $120 each, I wasn't expecting 6 sessions to be charged to us next week. I know we have to pay 30% when something is 'covered', but not 100!
Alas, I had more phone calls to make.
Well, it turned out they applied the feeding sessions under BRADY'S name instead of Jax's. The insurance rep told me it must've happened out of error since they have the same birth date, but Brady's name is alpha. I told the lady she gave me a heart attack, lol!

The boys are really ramping up for their birthday party just a bit over 2 weeks away. They've chosen to have a Lego-Party. Since we're gone next weekend and I just found out I'll be in Nashville, TN for a few days the week of their party, I realized I need to get the details done/ordered/set pretty quick here.
Now, I love the fact that their birthday is in the middle of summer for outdoor parties, but I'll admit my head is in 10 different places this month trying to keep it all straight!

Work is still great for Jay and I, but it's definitely still a tough transition time with the boys having summer school for specific days at a far off school with no bus, and now specialized speech therapy for 2-3 days in another town and Jax's feeding therapy in another town and there's the t-ball games and then we wanted the boys in swimming during August.
Well, we have a summer sitter to help, but even taking the time to figure out who will pick who up where and we'll meet here and blah blah blah... I think most parents can relate!!! These are all really great things that make me SO happy to see the boys in knowing they'll help them so much more in the future, so we just have to forge through.  I keep thinking how FAST summer flies by and the boys will be in full-time kindergarten soon enough where everything will s.l.o.w.d.o.w.n. with them and I can just be crazy with work a bit more :)

I'd also like the boys to find some time each day to just be boys outside with sticks and sprinklers and slides, oh my, lol, you're all welcome for that.

Me with Grandpa at my cousin's wedding last week.

Nana and the boys.

Jay teaching Brady how to stand with a cocktail.

Santina and her men.

Brady kickin' it in the pool.

Jax willingly eating a granola bar after swimming. He almost ate the entire thing over a 25 minute period - this is a FIRST! Brady did a photo bomb!

I saw this online and loved it so much that I grabbed the image to share!

Friday, June 20, 2014

It seems to actually be working...

Just a quick update...

Jaxon seems to be doing well on the drug, Cyproheptadine. We could tell that it made him a bit tired and cranky the first two days, but by the third day, we noticed he was making the effort at each meal to pick up his own food and take his own bites. He is on day 5 of the drug now and he eats about half of his meal on his own before we have to intervene.
Now, this is a major fete for us, but half of his 'chewing' food isn't very much since 50% of his meal is still drinking Pediasure. But it's a BIG start for him!
It will take some experimentation with the dosage since children acclimate to the drug and the affects of hunger wear off, so we'll do 2 weeks on and off at a time, possibly only 1 week off in between if he regresses. We shall see!

The hope is that this drug induces hunger often enough that he'll of course intake more food and do some much needed gaining, but in the long run, hopefully, it teaches him that eating a nice big meal makes you FEEL better and it becomes a habit that the rest of us enjoy.

I just thought I'd throw this out there to anyone who is interested in our experience and considering it for their tube-dependent child!

Tuesday, June 17, 2014

Full Swing!

We are in full swing of summer!
Jax had his 6 month GI specialist followup and he's maintaining with only a slight gain. The team wants to see him increase his calorie intake with all the extra summer-activities and calorie burner he's doing, so I may start adding oil to some things. Otherwise, they all agreed that we need to try the drug Cyproheptadine again. It's technically an antihistamine, but it's also used as a hunger stimulant. It didn't work well on Jax when he was younger because his tummy was too much of a mess. But it's time to try again!
The hardest part is getting the dosage right so it doesn't make him sleepy (it's like Benadryl) but he should also acclimate to it.
He started it on Monday and the only thing I noticed so far was after the T-Ball game tonight, he reached for juice and crackers and ate the crackers in the car without us even asking. That has never EVER happened before. And by 'ate the crackers', I mean he ate 2-3 of them.
We'll see if it was a coincidence soon enough.

So, we had some major storms last night and lost power for almost 24 hrs. That is NOT fun on a VERY hot day! I went to a coffee shop to plug in my iPad to work and the babysitter took the boys to Monkey Joes to play. Thankfully the power came on just in time to make dinner and get the boys to their game.
Which, they LOVED.
Jax was the crowd-favorite with his intense excitement and yelling to every player what they should be doing. He jumped up and down while manning first base at every single play. He even tried sliding to some of the bases. Oh my gosh... you could just bottle up his happiness tonight! Brady was HILARIOUS playing short stop. Every time the ball was hit out, he ran forward right past the ball. That kid is so cute I can't stand it sometimes.
They sure are some little sluggars. We were surprised they did so well with the T, since they prefer a pitched ball. I think they'll really love this league for the summer.

We have a busy end of week ahead of us with the soup kitchen, a wedding and our interim sitter suddenly going into premature labor tonight, eek! Never a dull moment around here. Hopefully everything is ok!
Work is going well for both Jason and I. He's still studying hard and kicking off his business pretty well. I'm working more and more hours and although slightly insane, pretty happy with the position! The boys start summer school next week, which should help regulate the schedule a little bit! But otherwise, they are loving their free-play-time in the yard. Running through sprinklers, playing any kind of ball, riding bikes, using sidewalk chalk, going on swingsets, running around with sticks :) Yup, summer is in full swing!


Here is Jax chatting up a 6 yr old boy at the barber shop. He asked the best questions! "So, do you have toys in your basement? Do you have a brother? Do you like baseball? I'm almost 6 too, that's very awesome."

Loving the moose at our neighborhood bar and grill.

Jason with the neighbor-guys getting their group Father's Day gift.

Isn't this baby PRECIOUS?! We stopped by a birthday party Saturday afternoon to soak up her cuteness.

The gift - a batting cage!

The boys all love it!

Coach Jay sorting everyone out at t-ball.

Jax on 3rd ready to run to home.

Gorgeous skies at the fields.

First real t-ball game!

Thursday, June 12, 2014

End of school year photos!




Jax with some buddies! (A mix of age 4-6!)

Brady!

Brady with his beloved speech therapist!

The boys with Miss Allyson. An aide for the past two years!

Daddy and the boys. Gosh they're really looking like him!

The Fam.

I sent these books with the boys for their teachers to write in. I wanted to collect something each year from their teachers. I was SHOCKED to get the books back with so MANY messages from everyone! Their words were amazing...

Last bus ride until September!

Jax with his teacher!

Brady with his teacher!

Onto Kindergarten...

Sunday, June 8, 2014

Preschool is on it's way out...

The school year is winding down with only one week left of 4k! Well, 4 days since they don't have school on Fridays...
Our goals before kindergarten in September will be to work on tying shoes, balancing a bike, better hand writing and other things like remembering my phone number and what to do in emergencies. They almost have my number memorized, but tying shoes, balancing bikes and even full potty training (overnights) is very difficult for apraxic-kids, and the doctor gently reminds us of that so we don't worry and to know it will come with extra time.  But, they are academically ready for kindergarten, so we're excited and happy about that! I know they are behind developmentally from other kids turning 6, but they are definitely getting there! They make us proud every day.

Jason has his coaches-meeting for t-ball this week and they officially start playing next week. They 'practice' each night in the yard and are so obsessed. Although they bat from a pitched ball at home, they still think t-ball is going to be, "super awesome", as Jax says.

An update on my journey of obtaining affordable medication for Jax continues. And I wish I was wrong, but alas, I was right about the 'program' for Jax's daily inhaler. So, once again, it took me 3 phone calls, 2 emails and one stop at the pharmacy to make a game plan with the specialist. Which is to pick up a few months of free samples from him on Monday and we'll decide in fall what medication to switch Jaxon to. He doesn't want him switched to an alternative right now I guess.

I'm nowhere further with his hGH medication either. The manufacturer of the medication called me on Friday to see why we didn't get it yet, and after my sob-story of how difficult the pharmacy has been, they are going to try and call and get it straightened out. And if a 3rd party doesn't help, they'll have the Endo-nurse call. All I want is an invoice to pay. I have no idea why they can't invoice me, it's so strange. And no one has TIME to make these many phone calls over one medication, it's just mind boggling to me! I have two weeks of his medication left, so this obviously has to be ironed out soon.

Jax has his 6-month follow up with the GI specialist and Feeding Team at Children's Hospital on Friday. I have a strong feeling we won't be taking any of this night tube-feeding away. I can usually tell if he's gained weight, and I think he's only maintained in the last 3 months (quarterly weigh-in with the dietician). His weekly private feeding therapist said he thinks Jax will need to stay on the same amount with his higher activity in the summer months. So, I'm trying to put my big girl game face on for that meeting so I'm not disappointed with the possible news of 'stay the course'.



Even with bug bites everywhere, they still smile :)

Brady being Brady on the way to the pharmacy!

Silly before our bike rides!

Practicing their baseball
We snuck off to the pool Friday afternoon after therapy!

WHY is this sideways? (sigh) We took the boys to a church festival by our house and they ran around all afternoon with the neighbors going on the rides. I caught Jax doing the pee-dance coming out of the fun house :)

Sunday, June 1, 2014

It's JUNE

We've had two glorious weekends straight of sunny pool-days. We are definitely not complaining!

We took the boys on bike rides to dinner the last two Saturday nights (co-pilots connected to the back of our bikes) and the boys love it. Jax has zero balance and barely reaches the peddles, so I beg Jay to take him. Brady has a little balance and actually actively peddles, so it makes my job a little bit easier!
The boys are on a countdown to summer-break (8 more school days!) and also a countdown to their birthday next month. Jax actually woke up yelling "It's JUNE today! Our birthday is next month!" on Saturday. That kid!

We're still waiting to hear back about Brady's summer-speech-grant and I'm STILL trying to get Jax's hGH injections ordered from the specialty pharmacy. It's been a nightmare working with this company that requires a minimum of 40-90 mins per phone call, with a different answer, request and/or plan each and every time. My favorite answer last time was that they don't even take our insurance and was wondering why I was ordering with them. Umm... trust me, if I didn't HAVE to use your company, I wouldn't! I won't bore you all with the details, but it's been the most bizarre and frustrating experience with obtaining a prescription! I'm really sick and tired of hearing, "we'll call you" and then they don't, so I call back, and NO ONE knows what to do. Oh my goodness GET THERE!

I'm now also trying to figure out how to get Jax's inhaler (Advair) since our insurance won't cover it at all. It's $500... just for ONE inhaler that he takes twice daily as a preventative. So I called the asthma specialist asking for a comparable drug to switch to and I received a message back that we should pick up samples from his office and work with the nurse on a program that's available.
(sigh)
I'm so over 'programs'. I know that sounds snotty, but my gosh, I can't even tell you how many programs and plans that I've had to apply for, seek out, call for, etc... only to go through a very long process that ends up telling us that it's only for a certain percentage under the poverty level. So now, I ask people right away so we don't have to go through the non-stop waiting (the kiddo needs the meds) and the lengthy paperwork and phone calls.
So, now I wait for this phone call to discuss this 'program', where maybe I'm being negative (or jaded), but I just feel like two weeks from now, I'll still be asking the doctor for an affordable alternative.
Let's hope I'm proved wrong.

In the land of good-news, Brady is now saying the word "no" perfectly! He used to always say "OH" without the 'n'. Then he worked on the 'n' for months and finally got to saying "Nn-oh". Suddenly, he's now saying 'no' simple as day. We love it, and we know it took him a lot of work. So proud!

Jax is starting to really eat cereal with milk. He gets a little upset that he uses a 'baby' spoon, although we tell him it's just small! He can't handle the liquid and a solid off a regular spoon, so I tried a 'small' spoon and it worked perfect!

Small victories all around :)

Jay is gone this week to Vegas for work conferences, and it's interesting to see the boys react to him being gone now. They've gotten so used to him not traveling for work anymore, that they were MAD that he was gone. It's so interesting how fast kids adapt to 'new normals'.



Frozen yogurt after Saturday night dinner on bikes.

Brady hanging with the big boys waiting for snacks while visiting the neighbor's tennis club.

Eating their snacks! (Jax disappears during these times!)

Oh! There he is! He'll try ice cream later in the day! (He had about 5 licks and that cone became mine)

A week later at the gym-pool.

Bubba taking a break with me.

Jason tied the boys in knots!

The boys have Jason's mosquito bite reactions. When it's by the eye it looks awful! Both the boys went to bed with Benadryl to try and calm the tumors coming off their heads and faces today! And this is with his allergy medication that he takes daily, oy.