Changing privacy settings

I decided to change this blog to invited readers only, for a few reasons. I have a lot to say, so check back soon.

Seriously?!?!?

So we're having a bit of a rough start to 2013. Where shall I begin? :)

New Year's Eve. My sweet little 2 1/2 year-old boy woke up early and irritable. Began complaining of groin pain and continued to complain about every 10 minutes, all day. The area he would complain about varied from time-to-time.... would kind of stop him in his tracks for a few seconds and he would grab at himself down there, or behind, and sometimes his lower tummy area. Eventually I called the doctor, as it wasn't letting up and I could see no evidence of irritation or swelling, etc. She wanted us to go to Children's Hospital ER to have him evaluated for testicular torsion, hernia, UTI, and the like. He and my husband were there from 5-10 p.m. They ruled out the super-serious stuff mentioned above, thank goodness. The next morning, New Year's Day, he awoke with a new cold (he is just getting over a 4-week one!!) and seemed a little warm. Still complaining about the same pain.

January 2- he awoke with crusted eyelids on top of everything else. Follow-up with the pediatrician doesn't reveal what is causing him discomfort, and they ruled out a UTI. She sees an ear infection in one ear and fluid in the other, and takes a look at the eye infection and thinks it's probably viral.

So while we were at the doctor's office, my dad was watching Olivia, and he brought her cousin over to play. Around the time they were getting ready to leave, I noticed a red, swollen mark on Olivia's cheek. Asked what happened... she didn't know. About 10 minutes later, I notice a cluster of what I think are some sort of bites on her cheek, and they are itching her. I notice another area on her jaw below there. Within another 10-15 minutes this same pattern appears on her other cheek. I then see her itching her arm- a big cluster there, too. I begin to realize these are hives and all of a sudden it dawns on me that she is having an allergic reaction... and immediately I remember my dad mentioning she tried a cashew with snack. One cashew. I can't remember her ever having a cashew before, and the only tree nut I know she's had is almond with no problems. She has also had peanut butter and peanuts with no problems. The hives continue to move and spread around her body, and I monitored her closely for any facial swelling or breathing problems. My husband was on his way home and picked up some Benadryl, which within an hour of giving her a dose, the hives were gone.

So my sweet girl who HATES being GFCF and dealing with all of that food-avoidance now has a potentially life-threatening allergy to cashews (probably also pistachios from what I'm reading). Obviously taking her to the allergist to confirm, but it is pretty apparent what happened. This puts a whole other level of pressure on the food-avoidance issue, for obvious reasons. I just feel so, so bad for her, and now am really scared about it. Before... gluten and dairy... I do everything in my power to make sure she doesn't consume one bite of these things, but things happen. And she doesn't get physically ill and we deal with it. Now... well, this is a whole different story. I am reading that subsequent reactions are typically worse, and that she will most likely always need to have an Epi-Pen and Benadryl with her... which could get interesting for a 5 year-old with impulse-control problems. But... we'll figure all of that out.

So that was yesterday.

Today my sweet boy wakes up with two eyes completely swollen shut, FULL of fluid all around the eyelid and the whole orbital area, not to mention completely crusted over with yellow discharge. It looks so, so terrible. Thankfully the Omnicef he was prescribed should cover the eye infection... but if it's viral like the pediatrician believes it may be, it's just going to need to run its course. And it's very contagious. So this should be fun.

Happy freakin' New Year.

I have to laugh... seriously. We're falling apart here!!! You know that saying about the month of March... if it comes in like a lion, it will go out like a lamb... or something like that? Well, let's hope the same goes for the start to a new year!!!!

Still counting my blessings as we begin this new year... just a crazy, crazy start, in typical fashion for us! :)

Happy New Year!

2013 is going to be the Year of Olivia! (Funny little inside joke with the hubs and some of our friends... think "Summer of George" from Seinfeld) I just know it!!!

Let's see... where are we? Well, we moved to a different homeopathic remedy and it didn't go well, so I think we're just staying away from homeopathy for now, until we can see accurately how all of these other things are affecting her. It kind of confuses things for me a bit. For instance, the week before Christmas, Olivia accidentally had a cookie that she wasn't supposed to have, (read: gluten and dairy) and I will say you could definitely see a difference within the next day or two (even her teachers noticed). Well, we had also just started the new homeopathic remedy. Within a week, things were better, but again- we also stopped the remedy... so was it dairy and gluten, or was it the homeopathy? I don't know for sure.

The doctor also stopped the Sacchromyces Boulardii for now and is giving her a one-month treatment of Nystatin, 3x a day. It is my hope that after this treatment, a diet low in refined carbs and sugars, along with Sacchromyces Boulardii, will keep the yeast at bay. I have to say that I think I've seen the biggest improvement thus far after her being on the Nystatin for a couple of weeks. Things aren't perfect by any means, but things are greatly improved. More than one person has noticed.

Coming up next week is a big team meeting with her teachers, preschool director, and behavioral specialist for all of us to discuss implementing the behavior plan in school. We also have a county meeting next week to see if they will approve TSS in school. :( The sad face is there because I just really didn't want it to come to this. The school requested this twice now, the last time being a couple of weeks before the Christmas holiday. Then the last week of school before Christmas, she had a FABULOUS week (until that damn cookie). So I'm very curious to see how next week will go for her at school. Either way, the school psychologist at her Wraparound agency is recommending 13 hours/wk for 2 months, (this is every hour she is at school) then tapering to 10 hours per week, then 7.5, etc.  I am very concerned with how Olivia is going to react to this, as she HATES being "different." Her BSC and I discussed it, and we will probably have the school and TSS take the approach that the TSS is there to help everyone, so as not to single-out Olivia, but certainly she will be the one to intervene when necessary and teach the teachers to implement the strategies they need.

We also had an evaluation with the Intermediate Unit to see if she would qualify for an IEP, (I REALLY wanted to get this in place before kindergarten) but she did not even come close to qualifying. The way it was explained to me is that things have to be affecting her educationally to the point where she is delayed. Well, she is certainly not delayed, but is in fact ahead, so that didn't pan out. I will be contacting the school district and we will at least try to get a 504 in place for some accommodations in the classroom. It is my hope and prayer that she will not need a paraprofessional by her side in school, that she can be successful in her regular classroom with her regular teacher! But... I will help her to get whatever she needs. I will just need to let go of my fears of social stigma for her. The I.U. teacher and her BSC have both mentioned that she may potentially need a gifted IEP as well, so that certainly made me smile. :)

So, that's where we are at this point. I have to say, my sweet girl is really doing so well. We had a wonderful Christmas and just a great time being together with our families. Little things here and there, but overall everything went very well. She is certainly still high-maintenance- LOL- but wow, what a difference! She is redirected SO much easier, for one, and that is HUGE. We have been keeping her pretty busy, and that is what she needs. She needs to be stimulated all the time! We are learning that anything art-related has a very calming effect on her, as does calming music (the two together are fabulous). She is reading so well, and I love her invented spelling! She often gets it right, though, and if you tell her once, she remembers how to spell it the next time. She amazes me sometimes with her complex thought-processes, her vocabulary is so mature, and she just says and does the sweetest things. It is these things that I want everyone to see, all the time! I think it's so easy for us- all of us- to focus on the things she struggles with. My goal for this new year is to focus even more on the positive... all of the life and love this little girl brings to us!!

So this is the first time I am posting a picture or video... check out my big girl reading! :) Such expression! She cracks me up!! :)

Update

Feeling pretty down today... so physically and emotionally drained. Just... tired. Tired of all of it. Tired of trying to deal with all of these difficult behaviors. Tired of doing all of this diet and supplement stuff. Tired of worrying and wondering if I'm doing the right thing. Tired of having endless conversations about the same thing over and over again. Tired of feeling like I am constantly trying to talk my daughter off of a ledge. Tired of hearing little "jokes" and funny comments and just comments in general about my daughter (no one means any harm... but it can hurt sometimes. Kind of like when my mom used to say, "I can say that about my kids, but no one else had better EVER say anything like that!"). Tired of the looks I get sometimes and the way I KNOW we are being judged sometimes about our parenting and our daughter's behavior. Tired of hearing people speak in frustrated tones to my daughter. Tired of spending all of this money that we really can't afford to spend on all of this stuff. Tired of having to talk to the school and teachers so much about all of this. Tired of feeling resentful that WE are the ones going through this. It is all just... exhausting, in every way.  And I really don't get any breaks. Everyone tries to help... my husband does the best he can, our parents do the best they can... but when it comes down to it, I am the primary caregiver of my children... I am the one who is with them 12 hours a day.  This is my choice, and honestly, it's a darn good thing I have made this choice, because I'm not sure if anyone else could do it. Hell, some days even I can barely do it. Often I'm just hanging on by a thread. Not to mention that Olivia won't go with just anyone, at any time... she often has a VERY hard time separating from me. Her diet and supplements are complicated, which adds more to the mix of difficulty. I feel like I need a week to myself, by myself. OK, maybe a couple of days... just to relax, read, and sleep. I can't even remember the last time I had that. And I'm wearing down...

BUT... nothing I can really do about it. Sometimes I laugh when people say, "God doesn't give you more than you can handle," or "God chooses special people to parent special children," blah blah blah... nothing special about me, nor would there be about you if it were you going through this. You do it because you HAVE to. This is your CHILD. Your whole world. The love of your life. This baby that you prayed for and waited for. You HAVE to get out of bed every morning and do the best you can. So I do.

So now that THAT is out of the way, I have to say that I am really SO proud of my girl. She is being such a trooper with taking all of these supplements. Here is what she is taking as of today:

Morning: 2 fish oil chewable liquid capsules, 1 opened capsule of Sacchromyces Boulardii in a teaspoon of applesauce, and 1 tsp of Hyoscyamus homeopathic remedy. Afternoon: 1 tsp. of trace minerals mixed with some juice, green foods antioxidant chewables, and today we just added 1 capsule of Lithium Orotate (this is the mineral lithium, NOT the medication). I tried opening the capsule and giving it with applesauce, but that did NOT go well, so my big girl actually swallowed a whole capsule in a spoonful of applesauce! What a little trooper! Evening: Calcium chewables, multi-vitamin chewables, 2 more fish oil capsules, 1 more capsule of Sacchromyces Boulardii, (we are working up to 3 a day) 1 tsp. Hyoscyamus, and about 3.5 mg. of melatonin before bed.

GFCF diet is going well, but limiting sugars and carbohydrates is NOT going to be easy. I have a hard enough time with the GFCF diet... I don't know how I'm supposed to tell my sweet girl that she can't have some of her favorite fruits or treats. Seriously. It's just not freakin fair. I kinda sorta want the doctor to prescribe her an anti-fungal to knock out the yeast, and then try to keep it at bay with the higher doses of Sacchromyces Boulardii and ease into this kind of diet a little slower. But we shall see.

So even though I'm struggling, and preschool drop-off today was especially difficult and emotional... Olivia has been doing really well at school. And this is what is so hard for me to understand: she can have several good days... and then something happens and she has a difficult day or two. Sometimes there are triggers, sometimes there are not. But it's confusing because you would think today would have been a bad day, as she had a VERY hard time at drop-off... (major meltdown, couldn't really calm her, distract her, or redirect her... I ended up having to leave her, and watched one of her teachers carry her down the hall kicking and screaming... heart-wrenching and embarrassing, to say the least) but once that was over, she had a good day at school. And sometimes she has bad days when she goes to school in a completely normal, good mood. So I just don't get it. So much I don't understand. While there are explanations for some things... impulsivity, sensory processing issues, anxiety... there are several things that just don't have a rhyme or reason to them. One big puzzle that we are hopefully figuring out, piece by piece.

Biomed and homeopathy

Here we go...

*Continue GFCF diet

*Limit refined carbs and sugars

*Continue 4 fish oil capsules per day, and also try to get 1 tsp. of olive oil in per day or eat olives

*Continue 3 mg. melatonin at bedtime for now

*Stop mixed probiotics and begin Saccharomyces boulardii- start with 1 capsule per day and work up to 3

*Begin Hyoscyamus homeopathic remedy- dissolve 2 pills in 1/2 cup water, give 1 tsp. in morning and 1 tsp. at bedtime

*After a few days on homeopathic remedy, begin trace minerals- 1 tsp. during the day

*After three days of trace minerals, begin lithium mineral supplement- 5 mg. per day

*Will also need to start an antioxidant soon and B-complex in the future

*Retesting urine for possible infection, and also doing an ASO Titer to check for Strep antibodies (I asked her to please rule out P.A.N.D.A.S.)

So... this is where we begin! Wish us luck. Pray for us as parents, that we can be strong, kind, understanding, and most of all... patient. Pray for our sweet girl that she can feel good about herself, be happy, and stay calm.

DAN doctor follow-up

OK, so I have been processing the enormous amount of information I received on Thursday regarding all of Olivia's test results. It seems the biggest thing screaming at the doctor is a yeast problem. She said her stool analysis came back pretty good, but the Organic Acids test is showing a pretty big fungal imbalance, most likely in the gut (though I have heard it can be elsewhere, like the brain... ugh). She is also having trouble metabolizing fatty acids, as well as digesting and absorbing protein. She has high ammonia markers, likely due to her not breaking down proteins well. She had a mild reaction to milk, and needs to stay away from it. We will stay GFCF for now, as the doctor said that if she has not had gluten in her diet, the test may not show a reaction to it, so we're  not going to mess with it at the moment. There is evidence of chemical and heavy metal exposure, particularly to xylene, aluminum, and silver, (it was explained to me that we are all exposed to so many of these things, but the difference is that Olivia's body is not sulfating or detoxing the way that it should be) and she tested low in trace minerals and very low in lithium.

It's amazing to me what all of these tests can show us. The treatment plan involves killing the yeast, and taking several supplements and homeopathic remedies. We should make additional dietary changes as well, mainly limiting intake of refined sugar and carbohydrates (feeds the yeast). It is my understanding that alot of what was reported above can happen as a "domino effect" from yeast overgrowth. So... a lot of work to do on the health-front.

Personally, I have really been struggling emotionally. Seeing your child hurt or struggling... I don't know if there's anything that could hurt a mother more. She's had a couple of rough days at school, one in particular. But what everyone (including myself and her teachers) needs to remember, is that she has ALOT of good days, some VERY good. There was a situation last week that was handled badly, in my opinion, and to say it broke my heart into pieces... well, that's an understatement. While I can understand the teacher's frustration, (believe me, I live with my daughter and know how hard it can be, and I've also been on the other side of this as a teacher) I believe her words and actions were the result of just that- a frustrated teacher who did not think things through, nor check with her supervisor on what she was threatening (to no longer allow my daughter into her afternoon enrichment class on Thursdays). I am very forgiving of how this situation was handled, as this school has been very good to our family, I just pray that nothing like this happens again. The whole team will be sitting down together after Thanksgiving (us, her teachers, the director, her BSC- behavioral specialist- and the county director of the agency providing services) to come up with a behavior plan that takes into account the problem behaviors at school AND my daughter's diagnoses. I just think a big part of the problem is that the teachers just have no idea how to deal with some of these situations (through no fault of their own). There needs to be some training on some of these increasingly common disorders, because believe me, my daughter is not the only one struggling at this school, and she certainly will not be the last to come through their doors, unfortunately. It is these kids- the very high-functioning ones who don't qualify or belong in a special-needs preschool- that so often get lost because the teachers are not trained to deal with any kind of special need. Now, she may in fact need a TSS at school, and that's fine... as they really just aren't equipped to deal with some of this stuff, like they hopefully will be when she attends public school kindergarten next year (I think I just had a panic attack). I was just REALLY hoping she could do this. And I would like to believe that she CAN, with some modifications. I just don't know if the school can provide the modifications without a TSS. The problem is it's not a quick process. We're ahead of the game because we already have an agency and BSC involved, but we still need another eval to prove medical necessity, then there's a county meeting to determine whether they will approve services in school, or not. I also just heard through the grapevine that it is very likely that they are doing away with services for ADHD and the like, and she needs to have an autism spectrum diagnosis in order to qualify come this spring. So... I don't know what's going to happen there. It is very frustrating because when you put her three diagnoses together, (ADHD, Anxiety Disorder, and Sensory Processing Disorder) it often can appear that she is on the spectrum. And if I'm being 100% honest here, I am not convinced yet that she does not have Asperger's. We shall see how things transpire over the next several years, I suppose. Either way, that is not the diagnosis that she has, even though SO MANY of the behaviors are the same. We still need help. But it may be taken away. And that's bullshit. But... it is what it is.

Yesterday my babe had her preschool Thanksgiving performance. My usually happy, upbeat little girl who absolutely LOVES to perform had a pretty bad day. She had practiced and practiced her lines and songs and she was SO ready... but her day got completely thrown-off by some relatively normal occurrences... it's just that these kinds of occurrences are anything but normal for Olivia. She had been fixating on the fact that Mommy forgot to send something last week with her to share for Letter H week. I don't know how I missed this announcement or lost track of it in my head, (could have something to do with making her special homemade hot chocolate that morning since someone was bringing in hot chocolate, or gathering her special ham and cheese since someone else was bringing ham and cheese, or maybe just my emotional meltdown that had happened over the previous two days) but it didn't matter- she would not let it go. So we made sure to take something on Tuesday and I asked her teacher if it was okay if she shared something, she said yes, that was that. Well, with all of the craziness of the Thanksgiving party and play, the teacher forgot. Totally expected, but of course Olivia didn't remind her, and when she realized she wasn't going to be able to do so, she was pretty upset, which came out DURING her play, when something else happened to throw her off. She was fidgeting around on stage, as she does, and stood on her drum and ended up breaking/bending it. I should have known better and gone right up there and fixed it immediately, but I didn't... and she came off the stage and just started to melt down. After that it was pretty much over. She completely missed her turn to say her lines and she came off the stage and cried a couple of other times. It was just heartbreaking to watch and there was nothing I could do about it. That's not my girl! She LOVES to be a star, and was SO READY. But when things go awry or not as expected, she just can't handle it. I am still crying about it every time I think about it, as I am about what happened last week.

I was reading something the other day about parenting a child with special needs... something about allowing yourself to grieve for the child you thought you would have, etc. and then beginning to accept her for who she is. While I understand and appreciate the comment, something about that statement doesn't sit well with me, or perhaps it just doesn't apply to the type of special needs Olivia has. She is EVERYTHING I thought she would be, and MORE. Way, way more (sometimes too much more- LOL)! She is not perfect... but who is? She is not a "typical child," that's for sure. But she is SO MUCH MORE than typical, and because of that, she gives me even more than a typical child would. Does that make sense? She is SO PASSIONATE, so full of energy, so full of life, and has more love in her little body than you can imagine. It certainly isn't always easy being her parent, but I feel like I am rewarded so much more. Does it make me sad that she can't sit nicely for a tea party and behave like a little lady? Not really. I really don't care. Maybe occasionally it bothers me a little that she's not a typical girly-girl, sweet little lady... but only when I compare her to others. When it comes down to it, there's absolutely nothing missing... there's nothing I have lost or that I am grieving... there's just MORE. And we just need to keep working to channel properly what's "more" about her. And that is not reason to grieve... that is reason to celebrate!!

ADHD Awareness Week

A poem by Brandy Nicole Head, posted on ADHD Awareness Week's Facebook Page...

He's bouncin' off walls, a super ball gone insane,
He runs through your world like an off-rail freight train,
Interruptions are constant, tantrums galore,
When it's time to do homework, he's gone, out the door.
The drama is constant, oh his foot fell asleep,
He moans and he wails, the theatrics run deep,
School is a nightmare, the teachers are lost,
If they only could see, he is

 worth the cost.

He is brighter than most, as most kids are,
And with patience and love, I know he'll go far,
But what I must take from well meaning friends
Don't let him do that. Oh these rules that he bends.

You're not a good parent. Your child's really rude.
His temper's Outrageous. He has hands in his food.
He hears this and wonders, just what's wrong with me?
I tell him, You're special, you have A.D.H.D.

Now A.D.H.D. is a gift from above,
It teaches us grown-ups how to strengthen our love.
It helps to teach your teachers, no two kids are the same.
You have awesome energy that could bring you great fame.

You don't need much sleep, you never wear down.
You're silly and funny, when you act like a clown.
You've felt lots of pain from what people have said,
But you pray for those people when you go to bed.

So you try every day to make a fresh start,
For God gifted you with an extra big heart.
As I look at my child, he sees through my soul,
My heart feels like busting, as I realize my goal.

I know this boy like no one else could,
He's a blessing to me, he's strong and he's good.
So I'll love him and guide him through the worst of the worst,
And he'll make a great man (if I don't kill him first).

I'm kidding of course 'cause I know what's to be,
When I look in his eyes, I see a reflection of me.