Holy Evaluations!

Hey y'all!

I know it's been A WHILE since I last posted. Well, as y'all know Joseph is on deployment. Shortly after he left I went to the Parent Leadership Institute from Family Voices of North Dakota and then Murphy's law kicked in where ever possible! I knew things were going to go wrong because that's just how it works when they're gone but you're just never fully prepared. For starters I got super sick right before the PLI but thought I'd kick it just as quickly as I had caught, yeah.....NO! It got worse at the PLI and only buying half the local gas station's pharmacy brought me a little bit relief on the last day of the institute. On the way back home I left my phone at Red Lobster and didn't notice til I unpacked the truck in my garage....two hours away from the restaurant. So back I went after dropping the kids off at my friend Sara's. And as luck or Murphy's law would have it, I got a speeding ticket for being 5 miles over on the way back from the restaurant! The day after that my car's left dipped beam, or front light as regular people call it, stopped working and a day after that I managed to crack my windshield. Go me! NOT! Of course our insurance doesn't cover that type of damage in North Dakota, go figure with those freezing temps of -57 degrees, potholes everywhere and rocks hitting your windshield every other minute! So there goes our trip to Greece. But that's ok. On top of it, I've been having computer trouble so getting on the internet was only possible with the iPad or kindle (if the kids allowed me to use either) and writing a blog post on those is kinda blah.
On the plus side I learned a lot at the Parent Leadership Institute and after an emotional breakdown on the last day while talking about our visions and plans, I came out much stronger and more determined.

Many of you have followed Isaiah's journey and know how hard it is for us to get the doctors and therapists to see what we see. Meanwhile we watch Isaiah struggle and suffer. All this was the reason for my emotional breakdown at the institute. I had decided to stop giving in when I get a no. I had decided to keep bugging until my son gets whatever it is he needs. See, it's not like we want something to be wrong, we don't want him to need a brace or speech therapy, or undergo sedation for an MRI. I don't think any parent wants that for their child. However, we also don't want to be in denial when there are issues. We knew he needs an SMO, speech therapy, allergy testing and at least an EEG to determine what his speech loss was all about.

So here I was with my newly ignited determination to not back down, even if that meant upsetting people and stepping on toes. See, most people who know me think I'm super blunt and won't take nonsense from nobody. That is true to a certain extent. If I don't know you, yes. But if I know you I'm too worried that being too straightforward might influence our relationship negatively so I'm not as pushy as I'd be with strangers. The same goes for our doctors and therapists. We've seen them from the beginning, Isaiah's ped literally saved his life when he stopped breathing in my arms. How do I tell this man that I think he's missing something without making him feel like I'm questioning his knowledge as a doctor? I discussed my concerns with Kelly, our Infant Development consult. She's very understanding and was quick to help me set evaluations so we could get things started. Just a little over a week later we had Isaiah's speech and PT evaluation. Ever since Isaiah had those two episodes where the threw up out of a sudden in the middle of playing and lost pretty much all of his vocabulary, I suspected he'd need speech therapy. The last speech evaluation we had, the therapist thought he was right on track with his expressive skills and advanced with his receptive. I disagreed, while he was able to repeat an array of words, he had very little spontanious expressive speech that he used without prompting. Plus, he barely uses words during play, only sounds. This time the eval was done by the university's speech clinic. They did a thorough exam and agreed that he needs direct speech therapy. So speech therapy: check!

That same week we did the PT evaluation. We kept telling his ped and PT therapist he needs an SMO but since they usually saw him in the morning and only for a short period, and PT consults are usually at our house where we're mainly in the playroom, so it was difficult for them to tell. Not this time! We scheduled the eval for the afternoon at the clinic where there is lots of space for him to walk and run and I made sure Isaiah got a lot of physical play time before the appointment. It also helped that he fell asleep in the car on the way to the clinic so he was still kind of tired when we started the eval. Nancy agreed that it is time to get him an SMO and we were relieved that Isaiah would soon be able to walk easier. SMO: check!

Shortly before Joseph deployed, Isaiah had a dermatologist appointment. When his ped first issued the referral to see the dermatologist Tricare denied skin lesions to determine if he had any allergies, much to our disappointment. Unfortunately, Tricare had much of an "let's treat the symptoms, not the problem" attitude in the hopes that it will cost less. Usually however, it ends up costing them more. So after an entire year of trying cortisone creams, ointments, syrups and the likes - and it severely affecting Isaiah's pigmentation and quality of life, the dermatologist said it was time to push for allergy testing....ain't that what we told her the entire time!?! Good thing Joseph took Isaiah to this appointment because I might have just lost it right there. Anywho. Notes were sent to ped, ped sent referral to PCM (Primary Care Manager on base), who then sent it to Tricare. This time they approved, well......we were in the process of transitioning to a new company and they issued a referral waiver so no referrals were being processed and therefore automatically approved. Allergy testing: check! Sadly, the test came back normal. At Isaiah's age they didn't want to do a blood test so they only irritate his skin. Plus, his back is small, so they don't test for everything, just the most common allergens and the dosage is much lower than it would be for adults. This means that he could still be allergic to one of the things he was tested for and it's just not showing, or it could be evolving. Also, if he's just intolerant but not allergic, which will still show up in his dermatitis, it may also not show in the test. So basically I feel like this test was for nothing. Especially because I keep telling the doctors that I suspect him being allergic to something that is used to process food, not a specific food. Reason for our suspicion is that his skin cleared up while we were in Germany where the foods are not as processed as they are here in the US, but flared up again when we went to Spain. There, the foods are processed almost the same way as they are here. So it could be a dye, flavor enhancer or something to make the foods last longer. Therefore doing an elimination diet is not an option. We're currently checking if the med group on base can do a blood test for those things.

As you can see I have gotten most of my checklist done but I still have the most hardest one ahead, convincing Isaiah's ped to do an EEG and possibly and MRI. Of course we'd prefer for him to not undergo sedation at his age, which is the only way a child his age will hold still for the durance of the MRI. At the same time, we'd rather have him undergo sedation and find an answer so we can intervene than not do it and miss something crucial. And invisible seizures are nothing I would take lightly! Isaiah's appointment is next month so be on the lookout for news on this!

I do have more to report but for now I will let you process what you just read, I think it's enough to handle. So thank you for following us!

Love,