One-on-One Aide, ENT Visit

So Lynk has this problem where he snorts. Continually. It drives everyone bonkers. We thought it was allergies. Allergy medications didn't help one bit. We took him in to have him tested for allergies. This kid isn't allergic to anything. So we went to go visit the ENT. His best guess is simply that Lynk has some type of irritant in his nasal passages that's causing irritation, inflammation, and a post-nasal drip, making Lynk feel the need to snort.

Genetic Testing Results!!!!

There has been a lot going on over the past several weeks. And I should have updated the blog sooner, but you know how things go. You get busy and end up neglecting things you shouldn't have. For me, I got busy making Christmas gifts. 90% of the gifts we are giving this year are hand made! It's been time consuming, which is why I sadly neglected this blog. Hopefully this post helps make up for it.

Lynk and School

McBride Elementary has been absolutely amazing to Lynk. The Special Ed (SPED) team has been working to get Lynk the accommodations he needs, even though he hasn't been evaluated by a Low Vision doctor yet.

Lynk's Allergy Appointment/Myck's Trip to the ER

Thursday/Friday this past week was a busy day. I spent a total of 7 hours at the Martin Army Community Hospital in a 24 hour period.

How to Post a Comment

I've had several people mention that it's been difficult to post a comment, so I thought I'd do a short blog on how to post a comment for all those who aren't sure how to do so on this blog.

Genetics Appointment!

Sorry it's taken me so long to write about Lynk's appointment with the geneticist. The past few days have been pretty crazy. And in that time, we've picked up the boy's Grammie from the airport, visited the geneticist, taken Myck to the ER for croup, had Lynk tested for allergies, and researched alternate ideas to help Lynk with writing at school. I feel like this is the first moment I've had to sit down and blog a bit!

Going to the Geneticist Next Week

It seems as though insurance is playing nice for once. We have an approval to go see a geneticist, though we don't have an approval for actual genetic testing yet. We have to do an initial consultation with the geneticist, then she will put in a referral for whatever genetic test Lynk needs done. Hopefully it will be approved. 

Parent Teacher Conferences!

McBride Elementary

Before I get to Lynk's parent/teacher conference, I wanted to let people know a little bit about McBride Elementary. It is a 21st Century school, and this is the first year it's been open, as they just finished building it a few months ago. A 21st century school is different than normal schools, both in layout and teaching strategies.

Appointment at Emory Today!!!!

It has been a whirlwind day. We loaded up the kids, dropped Myck off with friends in Phenix City, Alabama, and drove up to Atlanta.

Rainbows and Mini-Miracles

Today has been a day of rainbows and mini-miracles.

Accommodations at Home

Since Lynk's eyesight has gotten so bad over the past few months, it's been harder and harder for him to do certain things. Watching TV, playing iPad, reading, writing, doing any kind of homework are all now more challenging than before. To watch TV, Lynk has a small folding chair he pulls up right in front of the television, because otherwise all he sees is moving blurs across the screen.

Appointments...Kind Of

The good news is that we have an appointment for Lynk to see Dr. Jain. The bad news is that we can't schedule an appointment to see the low vision specialist until after he's been seen by Dr. Jain. The other bad news is that the earliest they can get him in is December 9th.

Approvals!

We are beyond excited! I just checked the insurance website on a whim, thinking that I would see Lynk's referrals still being processed, as I was told there would be at least a 3-5 business day wait on them. But when I checked it out, there were two approvals!!

Dealing with Insurance

Being a military family isn't always the easiest, but it does occasionally have it's perks. We get to see all different parts of the country, and we do get pretty darn good insurance coverage, as long as you don't need specialty care. Lynk needs specialty care.

Getting Accommodations at School

As soon as we received the news from Lynk's optometrist that Lynk is legally blind, I went to his school to see about getting him accommodations so that he can function in a school setting. I talked first to the school counselor, Ms. Flemming, who is in charge of setting up 504 plans. A 504 plan is basically an accommodation plan.

Stargardt's Disease

Stargardt's Disease is also known as Stargardt's Macular Dystrophy, or juvenile macular degeneration. It is a degenerative, genetic disease. This means that both Tyson and I are carriers of this disease, and Lynk got the unlucky combination from both of us. The disease is all about having a messed up gene that would normally get rid of something called liposfuscin in the eyes. But since Lynk's genes don't work right, the lipofuscin is just allowed to build up, which is really bad for his vision. More information on what exactly Stargardt's is can be found here.

The Beginning

Life is full of the unexpected. Sometimes, the unexpected is good, other times it's difficult.

Right now, our family is going through one of those unexpected difficult times.