Adding a new label

Hey y'all!

As I mentioned in my last post, there was one more thing we learned about Isaiah that I at the time wasn't ready to share yet. Partly because I had swamped y'all with a lengthy update, and partly because I was, and still am, in the process of figuring everything out. It's not that I'm overwhelmed with the news, because really, it's not news to me, I just don't know enough about it and am still educating myself. Isaiah seems to have to have sensory problems, at this point we're not sure if we're talking about Sensory Processing Disorder (SPD) or simply some tendencies, but we do know that he is sensory seeking in some areas and more sensitive in other areas. Some of you may remember me mentioning this last year around this time when we came back from the CHASA retreat here. Back then there were a couple of things that made me think that but when I mentioned my concerns to the pediatrician he dismissed them as being age appropriate. So I second guessed myself, I mean, after all he's the professional and chances were he was right. Now, a year later, I brought it up again. This time to Isaiah's OT (Occupational Therapist), he was here for Isaiah's first consult. Initially, we were just going to discuss Isaiah's arm and leg but Kelly, our MIDP interventionist, encouraged me to mention my concerns. Sure enough, our OT agreed that it would be a good idea to look into it. He recommended a couple of things, one being a weighted blanket. A month prior I had looked into weighted blankets but wasn't sure they're right for Isaiah. Anyway.
He told me about a local mom who makes them really cheap so I quickly ditched making one myself! Her own daughter was diagnosed with autism and when she learned how much those blankets cost, she was shocked. So she made her own, and is now making them for others, along with vests, I spy pads and neck pillows. She's not a professional seamstress, she's simply a mom who doesn't want parents to have to spend an arm and a leg, just to give their kids what they need. You can find her Facebook page here.
We picked it up yesterday and Isaiah likes it a lot! He usually kicks blankets off at night, not this one! He actually looked for it in his sleep!

Isaiah taking a nap with his blanket from Weighted Dreams

We have yet to get Isaiah evaluated, which I will request at his Dr. appointment this month. However, I'm currently reading "Raising a sensory smart child", and although I'm still at the beginning of the book, there are lots of paragraphs where I've scribbled "Isaiah" next to it! So many things make so much more sense now. It's quite possible that his desire for stimulation makes him scratch so much, which in turn affects his dermatitis. I also bought "The out-of-sync child has fun", which is written by the author of "The out-of-sync child" and suggests activities you can do with your kids. When looking into books, I had an incredibly hard time. While all the books I found were great, most of them focused on a hyper sensitive children. Isaiah, however, is mainly sensory seeking with some hyper sensitive tendencies when he feels like he's not in control. I think the two books I got are a good start though. Once he's evaluated, we can hopefully start direct OT and learn how to help him understand his body better and get the sensory stimulation he needs without it interfering with his daily life. I try to keep Joseph as up to date on those changes as possible but it's difficult for him to fully understand what all this means. By the time he comes back from deployment we will more than likely have started OT, established a different routine and have made adjustments in our daily life. That's one of the downsides of deployments, time does not stand still while they're gone. I might get the kindle versions of both books so I can send Joseph the hard copies to read in the little bit of free time he has. So here we are, adding yet another label to the ones we already have. And yet I am not discouraged. Quite the opposite, I'm relieved. To me those labels mean clarity to me. Without them I'm just guessing and experimenting. They also mean Isaiah will get therapies and treatments that will help him, services he wouldn't get without those labels. So off we go on a new journey, pack your bags and come along ;)


Love,

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,