Sunday, April 27, 2014

Fingers Crossed!

Have you ever had one of those weeks where you plan to do something, and then each night you realize you're a bit too busy and you'll "do it tomorrow"? Yup, that was me wanting to get to this blog since Thursday!

The boys went back to school after the long spring break. Brady finally ended his awful cough when Jax started up. I was hopeful that we MIGHT actually not pass a cold from child-to-child for once, but no...
Of course, Jax's asthma blew up and he had to stay home from school and see the doctor. UUUGH. But, after one really bad night, he actually bounced back nicely and quicker than Brady. He only has a slight cough now and will definitely be back at school on Monday.

I spent the entire week working on Brady's grant. I had originally planned to fax the application and required documents and email the video and pictures, but by Thursday I realized I had already had 56 pages and was expecting documents from his speech therapist the next day to include. So we ended up express shipping everything by mail on Friday afternoon. I created a video showing Brady at Christmas time talking about his presents and singing a song (I think I posted here on the blog back then) and then I also did an 'interview' with him this week to include. It's amazing how shy and silly he gets when he feels put on the spot to talk. His confidence plummeted compared to the video where I 'caught' him telling me a story.

So... everyone CROSS their fingers please!!

I'm waiting for Jax's insurance denial to come back from his feeding therapy. Jason's HR department seems interested in helping us to appeal. They tried to already contact the insurance company, but the insurance company was a bit harsh with their annoyance that there hasn't been a denial yet, so there's no discussion to have. And also 'they don't cover that service' so they don't understand the point of the conversation it seems. Ahh, lovely.
It's very confusing because our therapist put in a "request for services", which was not even considered. But since Jax had some therapy earlier in the month (when this insurance began), they will get a "claim", which, will obviously be denied when they receive it this week. Once that denial is in place, we can that start our appeal process. I guess.

Enough about all that.

Brady's teacher called me Friday evening to tell me of a situation that happened in the classroom. He picked the tag of what area he wanted to play in after he was complete with his work. He went to his teacher and tried to tell her something, but she couldn't understand him, even after many attempts. He walked away and she got busy with something else. She looked over and saw him in his play area (literacy area) crying his little eyes out on the couch. She felt awful and sat with him as he sobbed in her arms. She finally found out that he was trying to tell her that no one else had a tag from the literacy area, so he wanted to pick something else so he wasn't playing alone. Poor guy. She said she offered for him to go elsewhere, but he wanted to stay there, so she was sure to stay with him. They drew a picture and he drew a sad face. (break my heart, seriously) so she drew clowns and pretended to be one. He seemed fine then.
I spoke to Brady that night and confirmed to him that his teachers (and we) can't always understand him, but we all ALWAYS care.  He seemed to like the fact that she called to talk about it. Me too!

This week we have "Kindergarten Preview Night" where we'll see the boys new school. The boys will see the classrooms and we'll have a parent-meeting. I like that we'll see all this and even meet some of the other parents. The boys have their kindergarten-IEPs coming up the following week, so we'll really have a full plan in place soon. I love organization!

Jason takes 1 of 2 big exams this week as well. He's been studying non-stop for what seems like forever. So please cross your fingers for that one too!



Jax all excited to be eating some Easter chocolate!

Brady is a vacuum when given cupcakes.

Jax got so sick one night.

The grant - come on, no whammies!!

Brady with Papa.

Some outside play time this weekend.

Sunday, April 20, 2014

Insurance Woes

Happy Easter everyone!
We had a beautiful day of weather (finally) so it was nice to get outside a bit. Some of Jason's family came down for an early dinner. The boys really seemed to enjoy the day.

We've had another busy week leading up to the weekend. Jason and I took turns working late, but were both able to get a decent amount of things done around the house on Friday and Saturday. Jason even got the boys to the zoo on Saturday to see the Easter Bunny and to have a nice day outside for a bit.
I was trying to finalize Brady's summer speech therapy with talking with the new potential therapist. She prompted me to call our new insurance to get a better idea of what our out-of-pocket expenses might be.
I was so shocked during the phone call to the new insurance company. I was told that they will not provide ANY speech therapy to Brady, even with his Verbal Apraxia diagnosis. They said they only provide therapy to children who have had typical speech and lost it due to illness or accident and can be rehabilitated. I felt my face go red and my eyes start to well up.
I asked the woman to please check on Jax's feeding therapy submission that was sent in last week. Sure enough. Denied.
The woman on the phone said they don't provide ANY therapy to children with a tube-dependence, since there is no proof that clinics or therapy work.
I cried.
And cried.
And could barely get out any words.
The woman felt so bad and I could tell she was at a loss for words. I just wanted the phone call to end. She asked if we could get any supplemental Medicaid or anything, which made me even more upset with me saying "he just lost it this week".
ugh.
Not my finest moment. Or the many hours after that I spent crying while trying to get things done around the house. It just seems so WRONG that an insurance company can just make these rules. They're telling me that they won't waste their money on things that can't be fixed.

After I calmed down, Jason and I discussed the exact situation. Brady only needs 3 months of therapy between the school years. He can't go without it since he loses any progress, and he really could use a boost with this particular specialist before kindergarten. I found a grant for kids with Apraxia that I'm going to try to get to help with the cost ($360/wk). The deadline is in a week and I have A LOT of paperwork and reports to get from the current therapist, a referral to the summer therapist, her invoice, the insurance denial, official Dx's from specific certified doctors, etc etc etc. So I'll be working hard to get this all together ASAP and cross our fingers. There's no guarantee that we'll get it since we're not low income, but, it feels like you need to be independently wealthy to afford all this stuff.

As for Jax... he can't stop feeding therapy. He just can't. It's about $400-$500/mo for him, and we've decided to just pay that and go without some other things. I'll call his feeding team at the hospital and see if they have any other ideas since I'm sure they deal with this from time-to-time.

His Occupational Therapist at the hospital gave him his last OT session the last day of his Medicaid coverage and gave me tons of tips for things to do at home. She feels confident that his remaining delays will be covered at school now. So here's to hoping Jax's IEP meeting for kindergarten next month includes some decent OT coverage.

The boys go back to school on Tuesday, which they are really ready for. Brady's cold is still hanging around, but we've been lucky that it's stayed contained to only him. I feel bad that he has a cold, but he's doing pretty well with it.
Jax ate his first m&m today. He decided at bedtime he wanted to bite the ears off a tiny chocolate bunny, and he did! He went to bed professing his love for chocolate and that he wants it for breakfast.
NO PROBLEM!
Looks like we'll be eating chocolate for breakfast. Not a bad way to start Monday...


Transformers from Nana Jayne!

Dying some eggs.

Bubba is living the dream.

So happy!

This is just funny.

My dapper Easter dudes. They were in Brewer t-shirts 5 minutes later playing in the yard.

Father Dick, Jason's parents and aunt/uncle/cousins.


Tuesday, April 15, 2014

Camp

Spring break is here, and full of snow. Thank goodness we planned a couple of days for the boys at the YMCA for activities (day-camp).
Jax woke up SO excited about camp today. Jay dropped them off on his way to work and we both had full days to just focus on work! This was their first time gone from home at an activity away from us for an entire day... crazy huh?? Their 4k class is only 3 hours long a few days a week.
I got antsy 20 minutes before their pickup time and went to get them. I surprise myself with how quickly I miss them when all I say each day is that I need more time to myself to get things done!

The boys had a BLAST. Jax didn't stop talking about it all night long and he's so excited that they have another day there on Thursday. The counselors were so great about Jax's eating and gave me notes outlining exactly what he ate for his lunch and snacks. I was so worried about that since he eats every meal at home with us. We did a lot of prepping him in advance that he had to listen to the counselor and eat his food otherwise he couldn't attend camp anymore. They said it took him much longer than the other kids and he was the last one at the table for quite awhile, but he did it... which gives me hope for kindergarten!

The bummer news is that Brady is sick. He had a cough develop over the last couple days and when I picked him up from camp today, he was definitely ill. His nose started to run and he started a temperature. He was so tired at dinner that he asked to go to bed! Poor bean.
We put Jax in the spare room tonight because we have no idea where this cold is going to go on Brady and 'croup' may be in the air again tonight with the way he was coughing. UGH.
Jax always follows a few days later too, so I'm not happy at all to see this pop up again. I haaaate spring and all the nasty colds it brings!
And of course, I feel guilty now having Brady at a day-long camp while he felt lousy. Mommy-guilt is the worst!
If Jax gets sick and is unable to attend camp on Thursday, I think he may implode from disappointment, so please, pray for this child, lol!

Thursday, April 10, 2014

Kindergarten Bound

The boys are officially registered for kindergarten next fall. I'm very excited about it and feel that they will be ready. Of course, Brady's speech will be a big obstacle for him, but we'll be meeting next month for his plan and we found out the new speech therapist knows his current one and she's highly recommended, yay!
 I filled out some forms for the boys to be re-evaluated by the school district before their IEP meetings in May. And I'm also working on changing out all of the insurance info for e.v.e.r.y.t.h.i.n.g. which is a lot for Jax.
I have the boys registered for a summer school course that will help them prepare more for kindergarten as well. I'm also trying to figure out where and when Brady will have private speech therapy each day. I'm going to explore one more option at HealthReach where Jax has feeding therapy tomorrow. It will be nice once we have a summer plan of action with a sitter as well.

Work is going crazy strong and busy for both Jason and I. It's still a slight juggling act at home to handle it all, but we're hoping the summer months will bring some routine and ease up on the stress a bit.

Just a lot of details non-stop each day lately! But isn't that how it is for everyone?
The boys are officially on spring break for the next 12 days. Let's hope for the nice spring weather to continue so they can get out of the house and PLAY!

Monday, April 7, 2014

Promised Photos...

These were meant to follow the last post!

Jax man not feeling the best last week.

48 hrs after meds, and he was doing homework with a smile!

Jason 'cleaning out the woods'.

Brady at the bat.

Jason and Brady going for a bike ride.

This is Brady's new pose for some reason...

Jax and Jason standing the exact same way admiring the burning leaves.

The boys with Nana and Great Grandma on Sunday.

Great Grandma and Grandpa Sternitzky.

Nana and Papa Letts.

Jax sinking a ball over B's head, he made it!
Waiting for the bus and being cool...

Sunday, April 6, 2014

A little settling into the lungs

We've had a busy week with some unexpected illnesses go south, and then just our general craziness with all the new things going on in our lives.
First, that nasty runny nose on the boys that started two weeks ago, has finally healed up for them both this weekend, but not before wreaking havoc on Jax last Monday. He started coughing but he seemed to improve. Then he suddenly seemed to go down hill looking really tired with asthma and a fever, which is NEVER a good sign in this kid after a week into a cold. I brought him into urgent care, but they were PACKED with 12 families waiting and a room full of crying/hacking children. I asked the nurse how bad the wait was and she said at least 2 hrs. I asked her to check his pulse ox, and it was 94 (right after 2 neublizers, and his nightly Singulair and Advair). Which told me he wasn't keeping up with asthma and I drove around the building and brought him to the ER instead.
Thankfully, they put him in a room immediately and started working on him, where he then suddenly vomited ALL OVER the place. Poor kid!
They ordered him a chest X-Ray and took good care of him. The X-Ray was clear, but they saw in his history that all of his X-Rays were clear on the first check, and it always lead into pneumonia and a hospital stay. So the docs were all trying to decide if they should treat him regardless of the scan. I told them that since he was stable, I was comfortable taking him home and having his pediatrician check him out and make the decision in the morning.
I left Jax's tummy alone, but kept up with breathing treatments and then hand-syringed in a couple ounces every couple of hours in the morning before we got to the doctor after Brady got on the bus. The doc was concerned about Whopping Cough since Jax would have small coughing fits that would end in vomit, but we all assumed that was because Jax vomits easily with any cold. He was tested nonetheless, and treated for Walking Pneumonia with antibiotics. She thinks he was definitely going to go downhill without treatment. His lungs just couldn't fight off the cold. Which... since it hit Brady so hard with croup, we were on the lookout knowing it was a tough one.
He's doing great and finished with the nebulizer and antibiotics as of today, and hit the last day of school on Thursday, so hopefully the boys can go back on a nice long healthy-run. Spring-time is the worst with colds!

The weather has been great this weekend and we definitely got some fresh air. Jason has been working on 'cleaning out the woods' as the boys say. He's clearing out the overgrowth that's starting to eat up some of our lawn. Our neighbors cleaned out their garage and gave us their 'co-pilot' children's bike that attaches to an adult bike. The boys LOVE it! It's so great to help Jax with his muscle-tone for peddling and of course balance for both. I ordered a second one off Amazon and think it will be fun for the four of us to go biking this year.

**I have SO many great pictures to share, but once again, my computer doesn't want to download them off my phone. Totally frustrating, but I'll work on it!