It’s been so quiet here for the last two weeks that I can hear crickets chirping, but there’s a good reason: we broke out of our comfort zone in a BIG way – and then we all got sick. Boo.
I’ll share more about our trip in a whole post of its own, but two weekends ago the Summers family got out of town. For the first time in their lives, the kids went on an airplane ride for fun. We went to Chicago!
Even though it was only a one day, two night trip, traveling with our food issues meant a whole lot of prep work on my part! I spent all week before the trip making arrangements.
Part of that was food, and part of that was homeschooling. (Yes, another post is being written about that part, too.)
Since there is so much to share in all these big posts coming up, today I’m just giving a little update on the kids.
I took Jed in to get a referral for an evaluation for Sensory Processing Disorder. Our pediatrician agreed he should be evaluated, so we arranged for that. I’m actually quite nervous about it, which is silly, since I’ve pushed so hard to make it happen!
The part that is most freaking me out a bit about this is that while she is okay with us getting a specific SPD evaluation at the therapy center recommended to us, she also wants him evaluated at a place that will evaluate everything…including a psych evaluation. Is that normal for this process? I don’t have a lot of good experiences with psychiatrists and psychologists, so I’m naturally a bit nervous about that part of it. Any reassurances would be lovely!
We held off on doing any trials for Zac before our trip. Since we knew we would be traveling that weekend and that traveling would bring lots of changes and exposure risks, we decided to wait on anything new.
Last Tuesday, home from our trip, we started tomatos…again. The week before, we went grocery shopping and Jed begged for some cherry tomatoes. Zac got all excited and said “me eat tomatoes, too, mama!” Then I had to physically stop him from popping a cherry tomato into his mouth!
We decided he may be ready to give tomatoes a real trial.
The first day, he was excited (as he was before). He popped a piece of a cherry tomato into his mouth, and almost instantly spit it out! He told me “Yucky, mama!”
Trying to salvage the situation, I said “Whoa, kiddo! Before you decide you don’t like tomatos at all, let me share something with you. *I* don’t like tomatos that way, either. They’re too squishy. Is the squishiness what bothered you about them?”
He said “Uh huh.” So I showed him how I make tomatos for me. I cut the slice of tomato, then rinsed the seeds and goop off of it. Then I cut it into a smaller bite and gave it to him to try.
SCORE!
He liked it without the goop attached! (Downside? Now Jed, who would eat tomatos any way I served them before, has decided he will only eat them with the goop removed. More work for me. Sigh.)
That night he ate about two cherry tomatos all by himself, and we were feeling good.
Now, I had started feeling sick the day we left on our mini-vacation, but powered through because I didn’t want to miss anything. On Tuesday, I was feeling a little worse, but by Wednesday I really dropped the ball.
I barely cooked anything on Wedenesday, and suddenly realized, as I prepped for dinner, that I hadn’t fed any tomatos to Zac that day and that there was no way to really add tomatos to the dinner I had planned. Oops!
Thursday I corrected that, but by then, the kids were both showing signs of sickness.
Sick + FPIES food trial = not a great idea.
He’s got so much mucous from his sneezing and coughing cold/virus/whatever that it’s making his diapers look very NOT normal, and his appetite, behavior and sleep are all wonky. That makes it hard to tell how tomatos are actually doing for his little body.
So, the tomato trial isn’t a wash, but it’s not going full-speed, exactly as planned. We’re just introducing tomatos and not worrying if he won’t eat them. After all, he’s not even eating some of his favorite foods right now thanks to being sick!
We shall see how tomatos play out over the next few weeks, since I’m sure it will take that long to recover from our current ickies and finish the trial.
I’m just grateful that this time, I got him to at least try them!
In other news, we have finally gotten approval for TEFRA for Zac! Though we didn’t receive any sort of bill in the mail, we did receive a Medicaid card for him. His therapist joyfully told me that means it was approved!
We can now afford his speech therapy!
Of course, he’s inches away from being released from speech therapy, since his talking has just blossomed since July. Still, good to know we can afford it – and that we don’t have to back pay them, since they haven’t been paid anything for his therapy since February!
This is sort of ironic, in a way. Just as Zac gets approved for a service he won’t need for much longer, I’m probably about to have to begin the process of applying for TEFRA for Jed for OT services he will soon need (if the evaluation proves my gut instinct correct).
Well, at least I’m well-versed in filling out the forms, now, since I had to do so twice for Zac this spring!
That’s it for our little world…a fun, spontaneous trip, working, homeschooling, being sick (still sick), trialing foods, continuing to push for answers for our kiddos, and, as always, getting far too little sleep.
What’s new with you?
Sucks for being sick, but yay for TEFRA! We started our retrial this weekend for coconut. She didn’t even make it 5 hours. We are definitely FPIES to coconut still, without any doubt. She only ate 2 bites of coconut flour and was sick all weekend long. I was soooo hoping it would be a pass this year too, since we’re also doing the GAPS diet (which is heavy on the coconut). Yesterday was our 6 year anniversary. I had to be up and out of the house by 6am for work, and he worked until 11pm. I stayed up late just to see him for 5 minutes on our actual anniversary. It was so sweet that he brought me home a dozen red roses. He’s only ever bought me flowers once in our entire marriage before this! Aside from that, I”m taking a mental health break from social media right now. After being told by a complete stranger on a message board that me and my 2 year old daughter are both “terrorists and need to go back to wherever we came from” I just needed a break. I’m not sure if you know this, but I served as a United States Peace Corps volunteer for 3.5 years in a Muslim country. It was there, that I met my husband, as we both volunteered at an education center for refugee and orphaned youth. It kills me to hear some of the horrible things that people are saying about Muslims. I have read your posts about your life on and since September 11th. I also know how hard it is to be the minority in a community (having light blond hair and blue eyes, you tend to stand out over seas). It just breaks my heart that people stereotype all the good ones with the bad. And knowing I have to be afraid for my daughter for both her food allergies, and for the blood that runs in her veins, frightens the hell of me (excuse the language). It’s been a very tough week, and the political climate is only going to become more heated and dangerous for mixed families like mine. It’s hard enough just worrying about FPIES. I wish you and your family love, peace, and health.
Oh, no for the coconut reaction! Boo! 🙁 You’re right about GAPS. Will you still be able to do it even without coconut?
Happy Anniversary, and yay for flowers! LOL about your 5 minutes anniversary. Life is so romantic at times, isn’t it?
I don’t blame you for the social media break. It can get to be a bit much sometimes.
Actually, yes, I did know about your Peace Corp work! I was reading your blog from the beginning at one point, then I somehow lost the link and never managed to find it again. I think you sent it to me once; would you mind sending it again? The parts I had read before I lost it were fascinating!
Oh, wow. That’s terrible! It’s wrong to just assume someone is Muslim simply because they are of Middle Eastern descent, for starters, and it’s wretched to call someone you don’t even know a terrorist! Especially a sweet little girl like your daughter! Is your husband Muslim? Did you convert? I had a good friend years ago who looked about as Middle Eastern as you can get, but he was Christian from India. This was pre-9/11 and he still got his share of nastiness, even then. I think it would be fascinating to discuss this subject with you; you surely have a unique perspective. 🙂
Hugs and health to your family, too.
Yes, we are pressing forward with GAPS even without the coconut. It’s a lot harder, but we’ve now been doing it for 3 months. The goal is to make it to 6 months to at least see some healing. Unfortunately, we had our first back to back fail since October of last year. We failed venison yesterday. Which really bums me out, since my mother had managed to get 50 lbs of ground venison donated by local hunters who know what we’re going through. So now she’s going to have to give it all back. It would have been enough free meat to replace 2 meals a week for a full year!
I ended up taking a full week off. I haven’t been on facebook since Monday of last week. I haven’t felt this good in a long time! Too much negativity online, and I’m tried of hearing all the misinformed comments. The break has been a much needed sanity break. My peace corps blog is located here: http://fromthelandoffire.blogspot.com my personal one is located here: http://memoirsofanursingmother.blogspot.com
Sadly, I haven’t had much time to update either in the last year. FPIES… lol. Never thought that would be something I’d say…
My husband is atheist, but born to a Muslim family, in a Muslim country. It’s a secular Muslim country, and women make a personal choice to wear or not wear a hijab (head scarf). It’s not required, and women drive, vote (they got the right to vote before the US did!), and participate in all careers and aspects of civic life just like we do here. It’s such a small country, and since it’s on the boarder of Europe and Asia (Eurasia) it’s often very western, and very eastern, at the same time. It’s not really middle eastern in any way shape or form (like it’s southern counterpart, Iran, is.) Conversion is one of those areas most westerners don’t really understand, as it’s not required to marry a Muslim. I did not convert. I grew up in a mixed home myself (Jewish father, Baptist mother, agnostic step-father). I learned the value of a multi-cultural home early on. I learned both, but personally chose Christianity in my 20s, and was baptized as an adult. The meaning was much more significant with such an informed background. My husband loves that we are able to share Islam, Christianity, and Judaism with our daughter. He and I both feel that it’s possible to teach the best of all three, to help round out a world view on why we need to live together peacefully, and just how much we truly have in common with others around the world. (Which is much more than most would imagine!)
As you so well illustrated, a jerk is a jerk, regardless of culture or religion. 🙂 I always love reading about your family and faith. It’s a topic that many writers avoid (it is very personal), but helps people to better understand one another.
Wow…what an interesting family make-up you have! 🙂 I didn’t think it was required to convert to marry a Muslim, I just know that often couples will pick a faith to share for their families. So I was being nosy. 😉
You’re right about the meaning being more significant at an older age with more knowledge. I was raised Methodist, which typically encourages confirmation and “baptism” (they sprinkle instead of dunk) around pre-teen age…11-13. Now I attend the Baptist Church Darrel belonged to before we married, and they full-on baptize kids as young as 5. I always feel a little uncomfortable with that; while it’s wonderful the child has accepted Jesus as their savior, I always wonder if they really understand what they’re agreeing to…and whether it will “stick” as they get older.
Argh! I’m so sorry you reacted to venison! Boo. That meat would have been great to have.
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