Wednesday, March 29, 2017

So Sick of Sickness

I feel like my house is a petri dish. Well, not so much anymore now that my living room is piled with 6 loads of unfolded laundry and bedding ... and that I used pretty much an entire spray can of Lysol disinfectant in the past 24 hours ... and that I used two bottles of homemade essential oil disinfectants ... and that both children have antibiotics in them and are hopefully no longer contagious.

For the past month, we've cycled through viral infections, impetigo, colds, probably more viral infections and now strep throat. I've determined AJ and Teddy should really stay healthy because antibiotics don't seem to work so well for them. They both inherited my allergy to the penicillin family, which rules out a large number of drugs. Teddy reacted to the cephalexin from the impetigo. (Let's just say that what we were pretending was dry skin went away really quickly when he stopped that medication.) And we're hoping 3 out of 5 doses of azithromycin are enough to have wiped the strep out of AJ's system since apparently he develops a really cool itchy rash from that medication. Seriously, if they keep this up, they're not going to have any antibiotics available to them.

AJ was diagnosed with strep Friday evening (fun Friday night date!), so we began watching Teddy closely for fever or rash. Sunday afternoon he had a mild fever, so when he woke up with a fever of 98.8 Monday morning, that meant he went to the doctor instead of school. Turns out he did indeed catch his brother's strep (and then probably caught a cold and/or who knows what from the waiting room since he still feels the need to taste test inappropriate things).

I'm glad we took him in with such a minor fever because the diagnosis was confirmed. I feel like we should get a gold star for parenting a non-verbal child who can't tell us in a way we can understand that his throat hurts, that he doesn't feel good or that he's sick. We used to be overly paranoid with every fever but have gotten a bit more lax about minor ones where Tylenol or Ibuprofin do the trick because it's been so long since he's had a seizure. It's so hard to know, which is frustrating. Yet I talked to a mom whose daughter is tube fed, so she doesn't even get the potential warning from lack of appetite.

Who knows? Maybe Teddy had strep before AJ, and we just never caught it. Not that I want Teddy to have strep again ... but next time it'd be nice if he got the really distinctive rash AJ did. That might help us figure things out a bit sooner.

Thursday, March 23, 2017

I Love My Lips!

There's a Veggie Tales song that Larry the Cucumber sings called, "I Love My Lips!" Rather than a detailed explanation on Veggie Tales and singing cucumbers, let's just go with it's a Christian-based series for children that included movies, books and more. (And I was into Veggie Tales when I was in a high school ... guess I never discovered it as a child and just liked it when I did.)

Anyways, that's a pretty accurate description of Teddy's last two days. At OT yesterday, he was poking his index finger into peanut butter and then sucking it off. The idea was to focus on isolating and strengthening his index finger while keeping him motivated with food. (He's my child. He loves peanut butter.) Well, he got a glob of peanut butter on his upper lip, and he actually noticed it. He tried to figure out what was there using his tongue, and once his OT showed him a mirror, he was able to lick off the peanut butter.

Now, I get it's not remarkable for most people to lick food off their lips. But this was the first time I could recall Teddy noticing the feeling of having food on his lips and then maneuvering his tongue to get it off. For him, that's quite the accomplishment of cognition, motor planning and muscle coordination.

Don't get me wrong, the kid licks and sucks everything. Handle on the shopping cart. Yep. Doorknob. Yep. Heating duct in our basement? He even convinced his older brother to try that one. But to stick out his tongue to retrieve food from his lips was a first.

Then tonight during his bath, AJ was blowing bubbles in the water, and Teddy joined right in. His swim teachers have said he's blown bubbles a few times, but to be honest, I thought they were exaggerating what was really his attempts to see how much of the pool he could drink. But tonight was parent-verified bubble blowing.

It still feels weird to be excited about licking peanut butter off his lips or blowing bubbles in the bathtub, but I'm OK with weird.

Tuesday, March 14, 2017


Teddy had his first hippotherapy session yesterday. To me, it looked more like a horse than a hippo. (I know, I'm such a comedian.) Hippotherapy is therapy done using trained horses, along with volunteers, and a licensed therapist.

For more than a year, different people who support Teddy have suggested that he could benefit from hippotherapy. Simply riding a horse causes a person to engage an awful lot of muscles, which is great for Teddy to strengthen his core. There are plenty of opportunities for fine and gross motor skill improvements as well as chances to work on his receptive and expressive communication. Basically, it is a therapy that has the potential to help Teddy's overall development.

The reasons it took us so long to commit to hippotherapy, when it sounds like such a wonderfully beneficial thing, is partly due to cost since it's not a covered service by our insurance or Teddy's county program. Also, there's not an abundance of hippotherapy programs in the area. There appear to be some therapeutic riding programs closer to our house, but the only licensed program is 45 minutes away in De Pere. Last but not least, it was one more thing to do.

Still, we thought it was worth the hassle and cost to at least try it for Teddy and see how he responded. I was quite surprised (not pleasantly) that Teddy seemed terrified of the horse when we went for his screening. (I almost typed screaming ... that's what he was doing.) They managed to get him on the horse for a quick lap after AJ rode to show him it wasn't scary. He warmed up a bit, but he was still uncertain about that giant horse.

When we arrived yesterday, we were about 10 minutes early. That gave Teddy the chance to watch through the windows as someone else finished her session. As soon as the therapist smiled and waved to Teddy, he was so excited. He watched the horse non-stop until it was time for his session, and he went right up the ramp to his horse, Dakota. (That's a whole other story ... AJ's favorite cousin's name is Dakota, so now he would like to ride a horse named Dakota.)

Maybe he needs cowboy boots.

Teddy did awesome with his first session. He did well supporting himself without slumping for about 25 minutes and then needed much more prompting to sit up properly. He interacted with the therapist and the different toys and activities. He even twice managed to get Dakota walking by patting her when the therapist said "walk on." I'm excited for him to have the opportunity to communicate by learning the signal to make Dakota walk, so it was neat to see him do it twice at his first session. I'm certain it will take more time for it to become a constant skill he does, but I already see the potential.

He really seemed to enjoy it, getting a big smile each time his horse started walking and each time he walked by where AJ and I were watching him. AJ took quite a few videos, and I even managed to use my phone long enough to do one:

And, if we're being real, he didn't scream, he didn't fight to get off the horse and he didn't fall off the horse because he collapsed his weight. Those were all things I thought could happen, so I would have deemed it a success if they didn't occur.

Saturday, March 11, 2017

So Many "New Skills"

When Teddy masters something, it's referred to as a new skill in our house. Lately it feels like he's made so much progress. In reality, it's probably all the little improvements are now coming together into noticeable progress.

At his occupational therapy appointment last week, his OT called Teddy her star pupil because of how well he attended to tasks and did at completing those tasks. The fact that he twisted off a jar lid was particularly impressive to her, earning him that high praise.

One night this week, Teddy pushed his chair by the light switch, climbed on his chair and began turning the dimmer switch causing the lights to go off and then back on and then back off and then back on. He giggled at what he could control, AJ narrated the situation, and Dave and I both snagged videos of it after watching in amazement at first. He rotated his wrist to turn the dimmer switch like it was no big deal.

In addition to his twisting and wrist rotation skills, he's also becoming much more interested and capable in helping to dress himself. Recently, he's managed to get his shoes on (without his braces, but still). He's also managed to pull on a pair of AJ's socks. He's gotten AJ's pants on correctly and pulled nearly up to his waist. He's had an interest in putting everything on his feet, but now he's starting to understand and be able to coordinate how his clothes go on his body. He actively assists when getting ready for swim class by stepping into his swim diaper and then his swimsuit. (Now it would help if he looked, so he had some idea where he was stepping in relation to the diaper or swimsuit.)

Today, instead of napping, he decided to raid his closest instead. After the poison control fiasco, he's pretty well limited to diapers and wipes that he can reach. (Oh, and that screwdriver that apparently fell this week. Nothing like walking into your child's bedroom to get him ready for school to be greeted by him holding a screwdriver like he's about to shank you.) Usually he pulls out all the diapers and arranges them as artwork around his room. Today he decided he would much rather go swimming that sleep, so he pulled on a swim diaper. He might have been able to get it all the way up had he not put two legs through the same hole.

Sleep? No, I'm ready to swim instead.

It's just amazing to us how much progress we've seen in the past few weeks. As his teacher was praising his wrist rotation skills, my comment was, "Nothing's sacred now, is it Teddy?"

Nothing is folks, nothing is.

And that's a good thing.

Tuesday, March 7, 2017

Sickness, Spots and No School

Today is the first day in more than a week that both my children have went to school ... and now I'm stuck on the phone with the insurance company trying to sort out claims that appear to be incorrect (like discounting $13,000 worth of my Remicaid). And, apparently, my provider is on the hook for that $13,000 because no prior authorization was submitted. Sounds odd, but as long as that $13,000 responsibility stays between the provider and the insurance company, I'll take it.

Anyways, two weekends ago, Teddy developed a fever. It never went much above 100 with constant medication, but he was pretty crabby and miserable. We were pretty concerned because fevers can trigger seizures. The doctor said it was a viral infection causing the fever, crabbiness and rash, and it kept him out of school all last week.

Then Wednesday AJ developed a fever, so he missed school Thursday. Of course, the fever cropped back up again for him Friday afternoon and Saturday. On Sunday, our sitter said the rash AJ had on his face looked like impetigo, which I had to Google because I had no familiarity with it. As I realized this meant neither child was going to school on Monday, I uttered a few choice words (in my  head).

The doctor confirmed impetigo for both children. They're on antibiotics and no longer contagious. In some ways, I'm amazed we made it until March with either child missing a day of school due to illness. Of course, they made up for it by missing 7 days between the two of them.

Oh, and by the way, if you forget to call the school to let them know your 4K student isn't coming, they're pretty persistent in wanting information to remove the unexcused absence. But apparently they apparently don't care if Teddy shows up at school.

I have 30 more minutes of glorious freedom.

Thursday, March 2, 2017

PT Appeal

I've talked in the past about not accepting an insurance denial, but today was a new experience in the world of insurance appeals for me. Teddy's physical therapist submitted a request for 5 visits, one a month, back in November 2016. In January 2017, his state coverage (which is his secondary insurance) finally decided to deny the request.

I filed a letter to appeal that decision within a day of receiving the denial. A couple weeks later, I learned the next step in the process would be a hearing with an Administrative Law Judge (ALJ). That threw me for a loop because I had expected some sort of record review along the lines of previous appeals.

Fortunately, my requests for assistance through the Congenital Disorders of Glycosylation (CDG) Facebook group and PIGN Facebook group were met with an immediate positive response. A few people provided reference papers and other documentation to support the medical necessity of physical therapy for similar diagnoses. A mom whose two sons have a similar diagnosis to Teddy promptly connected me with her friend, who has extensive background within insurance companies. This friend of a friend, neither of whom I've ever met, spent a half hour on the phone with me walking through what I needed to do to prepare. Another mom whose daughter has the same diagnosis as Teddy wrote a thorough patient/parent testimonial regarding the medical necessity and benefits of physical therapy for her child.

Of course, this appeal process also required me spending nearly 1.5 hours on the phone on hold with various doctor's offices and Medicaid itself to try to request different documentation ... which I never really received. In fact, I spent nearly an hour on the phone requesting something from Medicaid only to receive a useless 1-page sheet that wasn't anything along the lines of what I requested.

Then last week I received Medicaid's position statement, detailing why PT was denied. Apparently the denial wasn't based on the fact that PT wasn't medically necessary as much as the fact that it's a duplicative service because he receives physical therapy in the school setting. In my mind, that weakened the really strong argument I had prepared about strictly the medical necessity of the service. I spent the remainder of last week on my runs (which I should be doing a run right now instead of rambling here) plotting my arguments, compiling my potential exhibits and worrying about the outcome.

And then I had two sick children this week, with Teddy home from school every day. That pulled my attention from the appeal somewhat but also eliminated other time I had planned to review and prepare.

Today was the hearing, which gave me a sense of deja vu. In my life before kids, I attended many unemployment hearings in my role as HR Director. The format of this hearing was identical to those hearings. Who knew all those hearings would serve as practice for this?

We'll know within the next month whether the denial is reversed. So, if it is reversed, does that mean he gets 5 PT visits in 1.5 months since it's taking 3.5 months to go through this process?