Category Archives: Anthology

We’re Famous Again…

We have now officially made it into all 3 of our local newspapers on 3 separate occasions! I said earlier this week that I wasn’t sure if it was a good thing or not when your family is “unusual enough” that you end up in the local paper 3 times…

Northwest Floriday Daily News-1http://www.nwfdailynews.com/local/chickens-and-their-owners-are-flocking-to-navarre-photos-1.344980?tc=cr

These are the moments

I don’t have a lot of great pictures this week, but I’ve had lots of moments that I have tucked away in my mind.

1) John had an EEG done to determine if he might be having seizures. He was very cooperative and well behaved during the entire appointment (the xray techs said the same thing when he broke his collar bone). We did not end up catching a seizure on the EEG, but they did note that his brain activity is slowed. (This is not uncommon in kids with developmental delays.) We will be doing a 48 hour EEG as soon as it is scheduled, and the neurologist’s office asked if we might be interested in a referral to a Neuropsychologist. Since we already have a diagnosis, I told them that we will pursue some further psychological testing to look at his processing but that we are not interested in another complete evaluation at this time. I was glad that the slowed brain activity showed up on his EEG because for the first time (outside of John’s physical therapist), I actually have doctors taking my concerns serious. Both of my kiddos are very talented at “faking it till you make it” (I think they got this from their mother…), and unfortunately, this often convinces medical professionals during the brief period of time in which they see the kids that there are no developmental delays.

2) I had decided to start Jessica on Year 1 of Ambleside Online’s free Charlotte Mason curriculum and John on Before Five in a Row, a unit study for 2-4 year olds. Unfortunately, I got about halfway through planning John’s curriculum for the fall before I realized that he is NOT comprehending a lot of the stories I am reading to him! He will sit and listen to them like he is really interested, but when you ask him questions, his ability to tell you what the story was about, what the pictures are of, etc is limited at best. After an absolute panic (in which I checked to make sure that Jessica’s curriculum for next term wouldn’t be too difficult as well….it seems to be just about right thankfully!), I decided to start using some very simplistic board books and picture books that I had saved from when we went through this with Jessica. The idea is that since you usually use listening comprehension to increase reading comprehension….why not do it in reverse by using reading comprehension with the aid of pictures to increase listening comprehension?!? We did this with Jessica as well, and it appears that the key was to start at her developmental speech level when selecting books. With John this is a bit more tricky because he always tested normal for speech (he also memorized the test after only doing it once) and he is currently out of therapy because they couldn’t really identify his delays clearly with their assessment tools. I am planning this fall (once we have finished the books I kept from Jessica) on doing an entire term of Eric Carle Unit Studies. Hopefully, we will be ready to start Before Five in a Row in the spring.

3) I have gotten back on track with celebrating Jewish holidays. I had let it slide during some of our most restrictive elimination diets because it would be hard for the kids to let go of certain foods. But I have concluded it is not about the food. It is about taking time to rest. I think God made Shabbat for people like me who must be “forced” into a habit of resting. It has been very good for me. I have taken time to read, journal, paint, listen to music, read Hebrew, watch some Dr. Who with my husband, etc. We originally started celebrating Jewish holidays in order to teach the kids about God. It was the only thing I found that worked, and I have found it to be a great tool for continuing to teach our family about God as well as helping to focus our calendar year on God….You can’t have a Shabbat rest unless you spend all week preparing to be able to take a Shabbat rest!

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A painting I finished last weekend that I am giving my Dad for his birthday.

A watercolor I did this weekend of Jessica....she was rather perturbed because her "hair is NOT pink!"

A watercolor I did this weekend of Jessica….she was rather perturbed because her “hair is NOT pink!”

4) I have decided to try adding back in all foods to get a complete list of which foods cause stomach cramps or diahhrea. I am trying to not pay attention to variations in my arthritis at the moment….unless of course it becomes unbearable. We are still GFCFSF, and we are trying to make choices about food that are anti-histamine and anti-inflammatory to hopefully keep our bodies as calm as possible. I am also trying to focus on the importance of reducing stressors as that can increase histamine and inflammation. We’ll see how this goes….

5) This week Jessica took some beading I had done several years ago for a costume of hers out of my room after I told her not to (I had been saving it for later) and broke some of it. For me this was the last straw. For many years Jessica couldn’t understand the instructions I gave her. As time has gone on she has understood more, but there was never a “Ok now she understands and processes it all”….she still has moments where she does not understand. We have also had some more behavioral issues crop up recently (poor sleep, arguing, etc). So….I told them after I found the broken beading that I was taking away ALL of their toys! I took them all out that night, pitched a couple, but most of them I stored in our craft/toy closet and locked it. I also took away the tablets as well. Wouldn’t you know that we have had MUCH better behavior, sleep, and interactions this week!!! I do get them toys out, but they can only get out one or two at a time. They have spent more time playing outside, having tea parties together, and dressing up than usual, and I am loving it! I gave them the tablets back for Shabbat, but they are about to loose them again for the next week. I think that all of the toys and tablets are just too overstimulating and that’s why we end up with behavioral and sleep issues.

6) John came into my room today with a toy knife from one of his daddy’s X-men figures and told me he needed to brush my hair with the knife. After he did this he said, “Now you look beautiful!” Some of the things he says just don’t make sense, but then there are other things that are just so cute!!!!

7) Jessica has made a habit of coming into my room about the time her daddy goes to work and going back to sleep on his side of the bed. I must admit I find this to be pretty cute because when she was a baby her daddy would bring her to me in bed to eat and nap as he was leaving for work. Nice to see such an old routine spontaneously re-establishing itself. :-)

Those are some of the moments from this week. Mostly I had feelings that my world had become unordered with all of the unknowns floating around concerning John’s development, but we have met the challenges and have our next step mapped out. Planning to further evaluate this next week with regards to where we are and where we want to be going, so that I make sure that the path we are on is the path we want to be on.

Long Overdue

It’s been almost 2 months since I’ve updated my blog which is a very long time for me, but there has been a lot going on at our house and consequently a lot going on inside my head. I still don’t have the answers, but I would like to pen a few words to sum up what has been going on around here.

We went to Memphis to visit family twice this summer, once at the end of July and once at the end of August. Both times, John came back with hives. The first time they eventually went away. The second time they kept getting worse and slowly spread to all over his body except his feet and hands. Eventually his scrotum swelled (from the hives) so we got an after hours appointment to see his immunologist. (Turns out his scrotum swelled up because it was broken out in hives too.) The immunologist also noticed that John had developed an asthmatic cough. He ordered blood work, but we were unable to get it done until after the weekend, so I spent that weekend up every 4 hours with John giving him doses of benedryl large enough for his older sister as well as breathing treatments. Once we had the blood work done we were able to start steroids to give his immune system a kick in the pants. He was eventually doing much better (although the rash on his face still refuses to go away). The blood work raised red flags with the immunologist for possible Diabetes Insipidus, so we got a referral quick fast and in a hurry to an endocrinologist who requested more labs. Then the rash on John’s face started getting worse, so we went back into the immunologist, where we decided to run some more labs (including 23andme genetic testing) to try and track down what is going on with him.

That is the super duper short condensed version of the last 2 months. A LOT more has been going on than that, but I don’t think I can actually put it all into one post. Many different things are being considered with John at present: Diabetes Insipidus, Immune Dysfunction, Mitochondrial Disease, MTHFR genetic mutations, other food allergies/sensitivities, etc etc etc.

We have also significantly limited our diet trying to make sure that we hadn’t added in any foods that might be causing the problem, so currently we are adding foods one at a time on the Paleo Autoimmune Protocol. We have currently added most of the meats and most of the non-starchy veggies successfully. Any meats that are not wild or 100% verified grass-fed were making me sick (possibly the kids too but they don’t always communicate these things effectively). The starchy veggies appeared to be feeding our systemic yeast, so we are currently off those and on the highest doses of Nystatin our doctor felt comfortable prescribing. We are hoping that the combination of the Nystatin, super restrictive yeast diet, vitamin D (for the digestive tract and immune system), probiotics (soil based capsules, lacto-fermented vegetable juice fermented in an airlock container, and enemas…the kids thought that was awesome….anything related to poop is great fun if you are a small child!), and a few other supplements our doctor recommended we try out on me first…..hopefully all of that will at least get rid of the yeast.

Jess and I both have an MTHFR genetic mutation that affects our body’s ability to methylate (or get rid of toxins in the body) so that is the next thing that we need to look at with me and Jess. Hopefully that will get us pretty close to the end of our journey. John on the other hand….there are still a lot of unknowns. Does he actually have Autism, or does he has an underlying medical condition that has gone undiagnosed? We don’t know at this time.

How are David and I doing? Well we are tired, and we are trying to streamline life as much as possible. I am beginning to feel more positive and upbeat about things than I have been (which is a little surprising to me given what all has been going on). I think the biggest difference for me has been making changes in the way I am managing our home. I am spending more time at home which means I have more time to take care of our home and especially preparing the mountains of food we eat each day. I am also beginning to start adding some things back in that are very important for centering our family….things like family Bible study, homeschool lessons (minimally), tea parties, etc. I have also recently enjoyed having Jessica and John help prepare dinner, and I joined a local ladies Bible study, which I think will prove to be helpful with re-centering myself, our home, and our family. I am also taking joy in the new things I am learning about because of our health issues: how to butcher and pluck a chicken, how to make fish jerky, how to cook frog legs, sardines, squid, and much much more. More to come on that later. I have work that needs to be done and have probably spent to much time penning this update, but it is nice to be able to get out! :-)

Paradigm Shift

The last couple weeks have been very difficult for me in a lot of ways. I’m not really a big fan of change, and we have had more change and activity in our lives during the last 2 weeks to last me for a very, very, VERY long time!!!!! We’ve had at least 20 doctor/therapist appointments, arguments with our insurance company that have resulted in teleconferences with myself, the insurance company, and David’s employer (who is fabulous). We’ve also had the “normal” stressors of having two small children underfoot who may or may not understand what you are saying to them, and to top it all off, we’ve had a complete shift in our diet. On the bright side, we have moved on to “Phase 2″ of making us well. On the downside, I am having to rethink how I cook all over again!

As crazy as it has been around here, there have also been things worth celebrating. John apparently has learned something during our school time with Jessica. He can now say all of the Fruits of the Spirit in order! And to think I wasn’t sure he was learning anything from it! I received my SteamVita that I won a few months back!!! Hoping to try it out very soon (it’s difficult to try out new recipes AND new cooking equipment at the same time….with 2 small children running around). A few days ago we attended a birthday party for a little girl that was told she wouldn’t live to be one year old. This week was her third birthday!! (I love celebrating birthdays of friends with special needs, both children and adults, because there is always SO much to celebrate!!!!!!) Another thing to be thankful for is that we really are making progress in getting better!

For the last 8 months we have been giving our bodies time to heal from the damage done by Celiac Disease. We had started reacting to all kinds of foods that we commonly ate, so for the last 8 months we have limited ourselves to about 30 foods each. Over the last couple weeks we have been able to start adding foods back in and have now begun “Phase 2″ of our plan: fighting the yeast that has taken over me and Jessica’s bodies while gluten was damaging our digestive tracts. We are on a blend of the Yeast Connection Diet by Dr. Crook and the Body Ecology Diet (which is basically a stricter form of the former diet). We are adapting, but it has taken time and effort to adapt to the shift in the diet. Also, we are occasionally running into issues with different products we try (like puffed millet from Arrowhead Mills) having minute amounts of gluten in them….which makes us not feel good and sets us back. :-/ However, I have come up with several new “hits” around our house: venison burgers on lettuce with cucumbers, butternut squash fries, butternut squash chips, fried plantains, coconut truffles, coconut water, coconut water popsicles, and I am hoping to try home puffed amaranth soon!!

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Foods2

The foods in yellow are the foods we can ALL eat. The foods in white are foods we can eat but that not everyone can eat. The foods in red are foods we can eat, just not right now (usually because of the yeast issues), and the foods in pink are foods that would be really useful to have back!

Doesn’t this list look better than the last one!?!?!?

In the meantime, I am keeping a pretty low profile until I can get a better handle on things around here. I did just finish up a wonderful book called The Book of Job: Why Bad Things Happen to a Good Person by Rabbi Harold Kushner. He is well qualified to write this book, not because of his scholarly degrees but because of his own personal experiences with heartache. I am now reading another one of his books called The Lord is My Shepherd. We have a couple weeks left of appointments and getting a handle on things around here, but hopefully then we will be able to take a couple weeks to relax and re-coop a bit! :-)

A Few Pictures

I haven’t been feeling well the last couple weeks, so I have A LOT of things to catch you up on! I decided the easiest way to do this was with a parade of pictures! :-)

We started out the month by celebrating Shavout (Pentacost) by placing a new Mezuzah on the doorpost of John's room. The Mezuzah contains the Shema (Deut. 6:4-9) which stresses the importance of always having God's Word written on your heart. It is a great opportunity to talk with our children about how God gave Moses the Law and how Jesus sent the Holy Spirit to live in our hearts.

We started out the month after we got back from Memphis by celebrating Shavout (Pentacost) by placing a new Mezuzah on the doorpost of John’s room. The Mezuzah contains the Shema (Deut. 6:4-9) which stresses the importance of always having God’s Word written on your heart. It is a great opportunity to talk with our children about how God gave Moses the Law and how Jesus sent the Holy Spirit to live in our hearts.

Next came John's birthday! We decided to just have a small family party at home given our current food situation, but John seemed pleased and was particularly enamored with the Calico Critters Momma and Poppa sent!

Next came John’s birthday! We decided to just have a small family party at home given our current food situation, but John seemed pleased and was particularly enamored with the Calico Critters Momma and Poppa sent!

Next up was my birthday, and our 10 year wedding anniversary. We have FINALLY figured out how to go on a date given all of my current limitations!!! This time we went to Bayview Park and had a picnic on the beach! It was a last minute change of plans (we had talked about touring Historic Pensacola), but we had a nice time!

Next up was my birthday, and our 10 year wedding anniversary. We have FINALLY figured out how to go on a date given all of my current limitations!!! This time we went to Bayview Park and had a picnic on the beach! It was a last minute change of plans (we had talked about touring Historic Pensacola), but we had a nice time!

David got to see a train...

David got to see a train…

And I got to see the beach! (The trail also had interesting quote written on the guardrails....some of them were originally written by transcendentalist writers which I found interesting.

And I got to see the beach! (The trail also had interesting quotes written on the guardrails….some of them were by transcendentalist writers which I found interesting.)

David also brought me home some flowers that weekend for the first time in 13 years. Previously, he wouldn't bring me flowers because "they just sit there and die." But, since I can't have chocolate (or most foods) now, flowers are a nice way to brighten my day! :-)

David also brought me home some flowers that weekend for the first time in 13 years. Previously, he wouldn’t bring me flowers because “they just sit there and die.” But, since I can’t have chocolate (or most foods) now, flowers are a nice way to brighten my day! :-)

John has been paying attention this year during dewberry season and has become quite the forager!!

John has been paying attention this year during dewberry season and has become quite the forager!!

I am so proud!!! Out in the backyard playing and need a snack? I'll just help myself!! :-)

I am so proud!!! Out in the backyard playing and need a snack? I’ll just help myself!! :-D And yes, he really does understand what is and is not ok to eat!

John has also really enjoyed swinging in a big boy swing!!

John has also really enjoyed swinging in a big boy swing!!

And Jessica LOVES the rope swing her daddy made for her!!!

And Jessica LOVES the rope swing her daddy made for her!!!

Seriously!!

Seriously!!

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Since all of the hoopla with Mother’s Day, John’s birthday, my birthday, and our anniversary, I have been on a rampage to “get ahold of our lives” post all of the absolute craziness of the last 6 months!!! And thus The Great Purge of 2013 has begun!!!!! I am currently over halfway through the house and am very pleased with my work thus far….if I can just keep that momentum going! This is our craft closet (you really don’t need a coat closet in Florida)!!

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The upper 3 shelves: storage, games/puzzles, and sensory activities.

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The bottom 3 rows: academics, arts/crafts, and misc. items that didn’t fit elsewhere ;-)

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Middle shelf: Fine Motor activities

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John’s closet: old baby items and clothes he hasn’t grown into on the top shelf

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Toys on the second shelf. We got rid of A LOT of toys, partly because John has really out grown the toddler toys, partly because neither of my kids really plays with toys (it’s a part of the Autism), and partly because I would rather keep a few things they really enjoy and have less to clean up!!!

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For John, this meant we kept mostly figures, trains, cars, tools, and potato heads. We don’t really keep toys out in their rooms because Jessica won’t go to sleep if there are toys out and John will throw them all over the room. John has a few blocks, a couple letter games, a few books, and stuffed animals out in his room, but that’s about it.

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Jessica’s closet: our camping gear stored on the top shelf, her toys on the bottom shelf and floor

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We also significantly thinned out Jessica’s toys as well for the same reasons. Hers were narrowed down to 7 different boxes of figures (polly pocket, princesses, strawberry shortcakes, etc), baby doll clothes, stuffed animals, and legos. Other than her closet, the only other toys in her room are a few books and her baby dolls.

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And there is the floor view.

Although we did significantly thin out the toys, I did take all of the Fisher Price Little People, music toys, and Lincoln Logs and place them in the living room so the kids could enjoy them together, and it has been a BIG hit!!!!

Although we did significantly thin out the toys, I did take all of the Fisher Price Little People, music toys, and Lincoln Logs and place them in the living room so the kids could enjoy them together, and it has been a BIG hit!!!! Seriously….old school Fisher Price Little people….I don’t know a kid on the Autism spectrum that doesn’t love them….all those tiny pieces to arrange…. ;-)

A couple years ago, I placed pictures on the top of our piano of people Jessica could call by name. I found it particularly encouraging to walk by their pictures every day because it reminded me that there were quite a few people that were very important to Jessica and that Jessica was very important to those people.

A couple years ago, I placed pictures on the top of our piano of people Jessica could call by name. I found it particularly encouraging to walk by their pictures every day because it reminded me that there were quite a few people that were very important to Jessica and that Jessica was very important to those people.

At this point in our lives with John now being in therapy, all of the food issues, etc, I wanted to do something similar. This time I took pictures of people that I know pray for us every day or have helped us financially to do what needs to be done for our children. I find it comforting to walk by these picture frames every day filled with people who all love us very much! (Unless I am wishing they were closer....then the pictures sometimes make me sad)

At this point in our lives with John now being in therapy, all of the food issues, etc, I wanted to do something similar. This time I took pictures of people that I know pray for us every day or have helped us financially to do what needs to be done for our children. I find it comforting to walk by these picture frames every day filled with people who all love us very much! (Unless I am wishing they were closer….then the pictures sometimes make me sad)

A few close-ups of the new "balcony people"...aka my cheering section!

A few close-ups of the new “balcony people”…aka my cheering section! My Dad’s side of the family who all ate “the new Bodkin diet” over Christmas without complaining! And my parents who have been a source of unending support…in many many ways.

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My paternal grandparents who pray for us every single day. David’s parents who have been a source of constant encouragement and support. My maternal grandparents who helped us pay for some of John’s speech therapy at the beginning of 2013.

David's paternal grandmother who prays for us every day and offers encouragement. My Mom's side of the family.

David’s paternal grandmother who prays for us every day and offers encouragement. My Mom’s side of the family….specifically my aunts who love and support us….and in whose eyes I don’t think I can do any wrong!

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Other than organizing all of the “stuff” in our lives, I have also been working on structuring our time better. When David and I first got married, I had a dry erase calendar on the fridge that I kept EVERYTHING on. At some point I got away from that. The other day I decided to come back to it, and it has made such a difference already!!!!

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The kids and I have also started school back up after taking a break from November thru April to deal with food and doctor issues. We are still doing a lot of appointments, but it is more manageable now. David and I decided that the first thing we needed to address was behavior, because I had let a lot of things slide while I was so stressed during the last 6 months! So, we have been going over the Fruits of the Spirit and are now working on sharing, manners, etc. We’ve also been working on reading with both of the kids, but our primary goal right now is behavior.

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This is our school calendar, and the kids’ checklists so we can check throughout the day and see what is left to do.

We have been working on A LOT more around the house and still have A LOT more to do, but I think we are beginning to achieve some sense of “normalcy” after our absolutely crazy last 6 months or so! But we are getting there! I have also been making an effort to take better care of myself and invest in face time with friends! It’s been a very good thing for my stress level, and I think I may have also found a new hobby: painting!!! I painted this tonight at a class I went to with a friend, and I haven’t found anything that relaxing/absorbing since dance (In case you are just joining us, I never took dance until I got to college, but I found it so relaxing that I almost had a minor in it by the time I graduated)!!!

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It’s supposed to be a “Zen Tree,” but it reminds me of something out of Dr. Seuss… :-)

A Little Discouraged

This week we got the results back from John’s MRI and genetic testing, and they were all normal, which is GREAT news! However, I am getting a little discouraged. We have been paying out of pocket for speech therapy for over a year now (that’s over $3,000 in case you are curious). We have been paying out of pocket for occupational therapy and physical therapy for 6 months (again probably another $3,000….and that doesn’t count the almost $1,000 in orthodics), and I’m not even going to attempt to list all of the expenses required in trying to figure out WHY he needs to be in therapy!!!!!! The frustrating part is that everyone says “Keep him in therapy. There is definitely a problem.” but no one wants to give us a name to call it so that insurance will start covering it!!!!!!! We had to go with a high deductible insurance plan because insurance wasn’t covering anything and at least this way we will meet our deductible (we just did….after I had to audit the insurance company because somebody over there can’t add correctly….). Now we are going through an Autism evaluation with him and will do the ADOS in about a week. However, although I do believe he probably fits very well into the description of Hyperlexia (a term used to described children with Autism that are obsessed with letters/numbers among other things), I am not sure that it isn’t going to be another dead end because I have worked so hard with him and he has responded well to treatment (although obviously we still have a lot of work to do or we wouldn’t still be in therapy).

It’s not that I want John to have a diagnosis; I’ve worked HARD to make sure that does not become something that defines him. However, I WISH that insurance would cover therapies if there is a delay regardless of diagnosis. I WISH Early Steps would have taken a closer look before he was almost too old to qualify. I WISH some professionals wouldn’t go “Not my area….move along.” I have worked VERY HARD the last year or so…..searching for what is going on with my boy (especially the Celiac…everyone thought I was crazy till we finally got that test results back and saw the difference….and by the way that cost us over $7,000), therapies, therapy homework, cooking every single thing my kids and I eat from scratch, etc, etc, etc. I keep telling myself “Just keep swimming (or in our case treading water) just a little bit longer….we’re at the end of the race….not much father.” but I have to admit, I am beginning to get a little discouraged. Hoping after some time to recover this weekend, I’ll be ready to attack it again next week.

For My Baby Boy

It’s late. I am the only one awake, and I should be going to bed. But, I have some things I need to get off my chest. Over the last 2 weeks we have been to a lot of appointments, mostly for John. We have learned that his receptive speech is almost an entire standard deviation behind his expressive speech (this means that John can’t understand as much as he can say….in case you were curious, this is NOT how language typically develops….at all). We have also learned from the orthopedist that the problems with his feet are neurological not physiological.  Yesterday we saw a neurologist, and he believes that the Autism symptoms everyone has been seeing are not Autism at all and symptoms of either: a genetic mutation, brain damage, or both. We have received orders for genetic testing and an MRI to try and determine what is going on with John so that we can help him as best we can.

I am not sure what the tests will find. I know some of the things they are looking at are Cerebral Palsy, Fragile X, Muscular Dystrophy, and other chromosomal deletions/additions. I expect that whatever it is that he will be considered “high functioning.” The neurologist did make a point of encouraging me to continue all of John’s therapies (the neurologist was very nice…I really liked him). I also plan to continue John’s Autism evaluation despite the fact that we don’t believe that is what is really going on and the fact that they won’t give him an Autism diagnosis without hearing from neurology first. However, I have waited 6 months for those appointments. I don’t want to wait another 6 months if I decide we need to do it later, and besides more knowledge is always better. This would also be an excellent way to get a referral for an IQ test.

How I am feeling….

1) I really, really liked the neurology team. It also felt really great to have someone else see what I am seeing….I’ve been concerned about this for about a year and a half. Some people have brushed me off as an over worried parent. Some felt that John was just not performing for Mom. Others felt that it was likely a form of Autism (which that is the most reasonable conclusion given the family history….however there has always been something that just didn’t feel quite right about that).

2) I am a little tired of the “hunting” process. It is a very lonely process because you are advocating for your child against the world with no name to call it….so no diagnostic criteria to back you up, no insurance coverage for therapies, and no network of other families with the same disorder because you don’t know what to call it! I am ready to have a name to call it, so we can work our plan. This is the last sprint of the race. We’ve just got to keep it up for a little bit longer!

3) I think Jessica and John will have a lot to learn from each other (especially since they will have different disabilities), and I am thankful for that and the special relationship they have.

4) I am thankful to have the opportunity to share life with both Jessica and John. I remember telling God before, during, and after our miscarriage that I wouldn’t have cared what was “wrong” with my child…I just wanted the opportunity to love on him/her even if only for a brief time. ALL life is a blessing, no matter no matter how long or what challenges may arise!

5) David and I do not believe in the words “I can’t” (me especially)! We have seen Jessica do amazing things. We have seen stories of other special needs children doing amazing thing, and do you know why? It is because they had parents that believed in them! NEVER underestimate the power of supportive parents!!!

And finally…

NO Test Can Predict A Really Awesome Life!

A letter to my precious baby boy:

John, God made you perfect just the way you are, and if some of these challenges are the result of prenatal stress, from the beginning God has had a plan to use those challenges for glory. Life isn’t about having and doing the things you want to do. Life is about honoring and reflecting the One who created you because without Him this world is nothing. Some day, you will be in Heaven where you can run without falling, communicate without frustration, hear perfectly, and eat copious amounts of gluten! But, until that day comes, you have an opportunity to learn more about who God is and to share what He reveals to you with others around you. What He reveals to you will be different from what He reveals to others because He created you to be unique with a unique view of the world, and it is your responsibility to share that revelation with the rest of the world in whatever way God has provided for you to do that. I believe God put a little of Himself in each of us (although not the same part) as well as a desire for community so that we would teach each other the things that God speaks to our hearts. Your daddy and I (and your sister) love you very much just the way you are and believe that with God you can move mountains!

With Much Love, Mommy

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Things are looking up!

We still can only have about 30 foods each (though symptoms have improved), and we are still hemorrhaging money paying out of pocket for speech, occupational, and physical therapy for John. BUT there are a lot of GOOD things going on at our house right now….lots to be thankful for!!!!

1) I WON a SteamVita unit!!!!!!!!!!! This is a stainless steel stacking steam cooking unit. I will be able to steam different foods in different compartments!!! Given that I often cook between 6 and 9 meals a day to accommodate for all of our food allergies, this will help A LOT!!!!!!!!!!

This is the SteamVita unit I will be expecting on my doorstep in a couple months!!!!

This is the SteamVita unit I will be expecting on my doorstep in a couple months!!!!

2) We paid so much in medical bills this last year that it looks like we don’t owe anything in taxes….as in we will get EVERYTHING they already took out back!!!!!!!!!!!! (You know how you have to have spent 7.5% of your taxable income on medical expenses to be able to deduct medical expenses? Yeah….David and I spent at least 21% of our taxable income on medical expenses last year….and that’s only the ones that I could find electronic receipts for because I didn’t realize I could deduct them until the end of the year!)

3) John is potty trained!!!!!!!!!!!! But only around the house…..while he can talk, he does not tell me when he needs to go, so going diaperless in public is not an option yet. The funny thing is that he feels the need to empty his potty IMMEDIATELY….so when he was in his room for rest time, he dumped it all over the carpet… David and I have fixed this problem by installing a 5 gallon bucket in his room for him to dump his potty into. Some days you just gotta “steer into the curve”…..

Latest addition to John's room

Latest addition to John’s room

*Speaking of excrement, I have a funny story on Jessica (there is no shortage of funny stories on my kids where excrement is concerned)! We came home from playing at the park with one of her new friends, and I said “Jessica why is your skirt tucked into your tights? You didn’t go to the bathroom.” She said, “Yes I did.” I said “No, you didn’t come get me to take you to the bathroom.” She said, “No. I went with my friend in the grass (this friend is a boy).” Obviously, my eyeballs about popped out of my head, but I pulled it together enough to not say anything and calmly ask her a couple questions a little later. Turns out she was the only one that had to go, and she did manage to do it by herself without any help. However, she did get a sad look on her face and say “But, I didn’t have any wipes!” I said, “Well, what did you do?” Then she got a big grin on her face and said, “I used my hand!!” I about died!!! The next week I told her friend’s mom what happened and apologized profusely!!! Thankfully, he has a very sweet mom who was very understanding! lol….the stories I have thanks to my children!

4) We discovered about a week ago that we can ALL eat venison. Unfortunately, it is the tail end of deer season (pun intended). I put out a request for venison to our friends, family, and church, and FREE venison has been pouring into our house! I think we might actually be able to make it to the next deer season after all, and it is really going to help my grocery budget (it’s VERY expensive to feed a child fish for almost every meal)!!!!! David also went and picked up a 24 cubic foot freezer we found on Craigslist for $125! It is an old one made of steel that still works great!!!!

That's a 1/4 grass fed beef for the boys, 4 deer (I think), and 16 pounds of unshelled nuts! I don't know how much venison it will take to feed our family until the next deer season, but I'd say we are at least well on our way! :-)

That’s a 1/4 grass fed beef for the boys, 4 deer (I think), 16 pounds of unshelled nuts, and plenty of room for more!!! I don’t know how much venison it will take to feed our family until the next deer season, but I’d say we are at least well on our way! :-)

5) I made up a soup for Jessica, AND she liked it!!!!!!! I used 1 quart of fish stock, spinach, chick peas, pulled venison, and about 1.5 teaspoons of salt! Also in food news, Jessica has been enjoying fermented lentil pancakes, and both of the kids are IN LOVE with water kefir!!!!!!!!

Jessica loving her soup!!!!

Jessica loving her soup!!!!

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And I have been enjoying oat tortillas with peanut butter and strawberry slices on them! Yum!!!! (The ratio for the tortillas is 2 parts GF oat flour and 1 pat water…part out and cook in a dry skillet on low heat)

6) We are famous (again)! 2nd time in a local paper in 7 months!

Our most recent article featured in the Health section of the Navarre Press!

Our most recent article featured in the Health section of the Navarre Press this week!

Our previous article on the front page of the Pensacola News Journal.

Our article from June of 2012 on the front page of the Pensacola News Journal!

And the second page of our article in the Pensacola News Journal!

And the second page of our article in the Pensacola News Journal!

7) I got a nibble on selling my bass trombone….that could be a $1,000 towards paying for the next round of medical expenses!!

8) After a year of searching, I think we are finally nearing the end of our search for a diagnosis for John….which means insurance would start applying all of our expenses towards our deductible (which we are getting closer to meeting….especially if all of those past therapies are counted)!!! It also means that we will be able to better help John because we will know WHAT the problem is!!!

I guess that last one requires a bit of an update…. This month John is seeing the following new professionals: a speech therapist, an opthamologist, an orthopedist, and a neurologist. (This is in addition to his regular appointments with his nutritionist, occupational therapist, and physical therapist.) He is still being evaluated for autism, but we still need to make sure nothing is wrong with his legs. Also, we are revisiting the idea of mild cerebral palsy.

Once I started adding up all of the things that are “not quite right,” it led us and his pediatrician to believe it is important to take a closer look at the possibility of cerebral palsy. John has fine motor delays, gross motor delays, speech delays (he drooled until just a few months ago, and while he can talk, he does not enunciate well and seems to only mimic phrases, though often in correct context), mild hearing loss (he’s only had one ear infection and there is no family history of congenital hearing loss), poor vision (He saw a really dark black guy in a bright purple shirt at the grocery store and kept saying “There’s Dad! There’s Dad!” Once the man passed, John said “That’s not Dad.”), his feet turn in, and two of his toes are beginning to curl outwards.

I had hoped that we would be done with all of the doctors’ visits and just be “working our plan” in 2013, but we aren’t and that’s ok. Here’s to having a diagnosis by sometime this summer!!

Happy Halloween!

Happy Halloween from Madeline and Pepito!! John and Jessica both LOVE watching/reading Madeline! I made Jessica’s costume last year (thankfully it still fit). John’s costume I finished this afternoon… I said I would never, ever wait till the last minute to finish a Halloween costume, but it’s been an interesting/full month… John wanted NOTHING to do with his costume….until he saw the hat and realized that it was a Pepito costume…..then he was sold!!

The kids seemed to have a good time trick-or-treating! :-) There were several houses that had non-food items! At the rest of the homes I gave the home-owners dollar bills to give my kids in lieu of candy….if I’d realized they were allergic to almost every food out there earlier, then I might have purchased more Halloween toys from Oriental Trader….next year, next year… We also let them trick-or-treat our house several times since we had non-food items, and they seemed to enjoy that! On the whole, I think they had a nice Halloween in spite of food allergies! (And now we don’t have to deal with all of the sugar rushes that everyone else is going to be dealing with!!) One of the really good things about taking my kids trick-or-treating is that I managed to make most of our street aware of the Halloween/Food Allergies issue. Many of them said to make sure we stop by next year because they will make sure they have something for my kids!! <3 (and I actually had a couple people that said if they’d had their wallets handy they would have given our kids a dollar instead of having to use mine….do we have awesome neighbors or what?!?!?) The kids also really enjoyed helping me pass out Halloween Treats when we got back home. All in all it was a fun night!

Tomorrow we are going to the store to spend their “Halloween Money!” :-)

Mary Anne

So, the last day or two has been rather difficult because I finally realized just how bad the allergy test results are, so in an effort to help move myself towards a more positive mindset, I wanted to share a sweet little story involving Jessica.

This past spring Jessica became absolutely terrified of going to heaven. We kept telling her “It’s a good place,” but we just couldn’t seem to get through to her. Eventually, we finally figured out that during Easter she had gotten the idea in her head that you had to “die on the cross” to go to heaven… We had actually chosen to NOT talk about the death, burial, and resurrection at Easter this year because I was concerned that she wasn’t ready to hear about it. We chose instead to focus on the Passover story which is a foreshadowing of the death, burial and resurrection. I should have thought to move her to the preschool class at church that week (I’m assuming that’s where she picked up on all of that, but I am not sure). We tried everything we could think of to reassure her that she didn’t have to “die on the cross” and that Heaven “is a good place” including showing her pictures of relatives that where in Heaven and talking about how they died (ex. “Her heart slowly ran down while she was sleeping”), but it was to no avail.

Finally, I decided to buy the book Heaven is for Real for Kids. Jessica is so visual that I thought that might work where nothing else had. I had read the book Heaven is for Real a couple years before myself and found it very encouraging because it painted a very visual picture of heaven that I could get excited about! (When I was growing up, people always described Heaven as a place where you would sing songs all day praising God….I always thought that sounded rather torturous because anytime we sang songs praising God at church that also meant I had to be dressed up, sitting still, and being quiet!) One part of both books talks about how Colton, the little 4 year-old boy that says he went to Heaven, met his sister that his mom had miscarried at 8 weeks that he knew nothing about (and his parents didn’t know if it was a boy or girl). I had found that particularly encouraging after our miscarriage between Jess and John, and when we read the book Heaven is for Real for Kids, I decided to try mentioning that she also had a brother or sister in Heaven hoping that maybe she would latch onto that idea better than older relatives (and without it being traumatic that a child her age had died….rather someone that had never been born). It took a few weeks….I guess for her to process all of that information, but she bought into it! Now we don’t have to worry about her being terrified of Heaven; instead, she is actually looking forward to it!!!! She has also concluded that the baby we lost was a sister and insisted that we name her! I have concluded that when it comes to Jessica sometimes it is best to steer into the curve….so we named her!

The only picture we have of “Mary Anne,” at about 6 weeks.

Her name is Mary Anne (Jessica picked out Mary. I picked out Anne, but Jessica approved.) which in Hebrew means “bitterness” and “God has been gracious to me.” Anne is also my mother and maternal grandmother’s (who is already in Heaven) middle name so I thought it was just perfect! All of our children have classic names of Hebrew origin that are easy to spell, and one of their names is a family name…except John who lucked out with two. I thought it was just precious to see Jessica so excited about the idea of “seeing her sister in heaven” and so insistent on naming “her.” I think it was also good for me as well. I was very grieved when we had our miscarriage, but I was also grieved a second time, when I realized that we would not be having any more children (2 kids with Autism, Celiac, and a slew of allergies is more than enough). I had really wanted a large family because I loved growing up with lots of brothers and sisters. So when we decided that we would not be having any more children, I, too, latched onto the idea that we might meet that child in Heaven one day. Irregardless of whether it was a child or a “misformed” bundle of cells, a girl or a boy, blue eyes or brown eyes, etc….”Mary Anne” was and still is a well-loved part of this family.