Hope

Hope

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.

2 comments:

Momma Bird said...

Oh goodness. I deal with stuff daily between my oldest and his sensory processing disorder and his therapy (won a victory a therapy in school for one year! phew!) and my youngest with his gluten intolerance. Sigh. Hard sometimes for me not to think why it has to be so hard sometimes but then I look at my guys and think I wouldn't trade a thing if it meant I couldn't have them! As for the bites, I have it (and carry an Epipen for bee stings...the stronger the bite or sting the worse I react) and my oldest was blessed with that...yuck.

Matt & Shana said...

Yeah for progress!! I'm sorry about the insurance stuff that is crazy!!