Wednesday, December 2, 2009

Yeah...I'm Still Here!

But barely! Recently it has been sickness galore in my house! I believe we may have even been hit with the swine flu around here. Hey we survived but it was tough, the worst flu I ever had! Maybe now I can relax and not get scared about it...

Here are some Halloween pictures of the family, it was great but cold. Of course Kaylee had to be a beautiful "fairy princess", as she called her costume. I haven't shared Kaylee's peculiar preference for dresses and skirts, have I? Well this girl LOVES to look pretty. She prefers dresses and skirts everyday. She will wear pants, but begrudgingly so. I am sure she would wear makeup if I let her.

















As for an update, Kaylee is doing so well. Most days we have NO tantrums whatsoever, unless she is exposed to some chemical or allergen, but the right allergen extract shot turns her right back around. I don't know what I would do without those things. Sometimes I have these far out worries that there will be some sort of nuclear holocaust and I will not be able to get Kaylee her medicine...but thats kinda overboard, right?

I want to get some before and after footage on here...but I have most of my older videos burned onto a DVD and I am not sure how to convert it to a file that I can put onto the website. Anyone know how I can do that?

Thats all for now!

Wednesday, November 18, 2009

A Great Discovery In Autism Research

This is very exciting news, and I am hoping that this news opens the doors into an awareness that there is an infectious component in the etiology of autism. A new retrovirus has been implicated as a possible factor of causation in autism and Chronic Fatigue Syndrome in adults. I have always wondered if there is some sort of HIV-like virus that was causing immune system dysfunction in our children and this could be it!

If you are interested in hearing more about this please watch these two brief videos:

Part One:




Part Two:

Tuesday, October 6, 2009

Who would've thought????

...that a simple pumpkin could mean so much?


But this pumpkin stands for a lot around here. It symbolizes normalcy, living life...the way other people do.

Normalcy is a little something we haven't had in this house for 3 years.

The last three years have been tumultuous, so I didn't really use my energy to decorate for holidays. I just couldn't muster up the enthusiasm. This year is going to be different. Starting now.

Yeah. It's just a pumpkin carved into a jack-o-lantern. But round here, its a new beginning.




*Kaylee and Joey watch Grandpa carve a pumpkin








*Inquisitive kiddos gather round the new creation

Friday, September 18, 2009

Kaylee Prays for the NNY Autism Center

Everyday and every meal we try to instill in our children our thankfulness to God for all that He provides by saying a simple prayer thanking Him, asking for His help, and praising Him for His goodness. I keep it very simple but the most important thing is that our children are aware of His constant presence and that they understand that He is the giver of all our good things.

Kaylee has been thanking God for Mommy, Daddy, school or whatever else comes to her mind...but lately, I have been thinking how Kaylee can pray for the NNY Autism Center.

The NNY Autism Center is where we took Kaylee a year ago to see Dr. Bruce Russell, for her biomedical intervention. We flew all the way from Chicago to Buffalo, then drove another 4 hours to get to a small little town called Black River.

I was expecting some sort of big building, all industrial, modern, cold. What I found was completely different. Here in the middle of a small town, was a house made into a modest office where some very special people are helping kids recover from autism, one child at a time.

Inside of this "office" is some of the most extraordinary people I have ever met. Namely Kathy Robertson, the director and nurse practioner. Mrs. Robertson has a grown daughter who has recovered from autism. Many a times I have called her, close to tears, and she has listened and spurred me on to keep going. She helped point me in the right direction when Kaylee's allergies were out of control, helped me figure out what to do when Kaylee regressed due to Hand, Foot, and Mouth Disease.

The people at the NNY Autism Center either make a very small hourly wage or nothing at all. They work hard to earn money through a non-profit organization to help pay for kids to get the treatment they need. In a world of charletons taking advantage of desperate parents with promises of cures, these are people who truly care.

It brings tears to my eyes to think of how they have been there for me, and how they haven't given up even though their treatments aren't what is "famous" right now. I am so grateful for them.

So now every night at bedtime, Kaylee and I pray for the NNY Autism Center, Miss Kathy, Miss Sheri, and Dr. Bruce, that God would bless them mightily, provide money for them, and bless their families. For now, Kaylee doesn't really understand why we pray this way, but I know one day she will...

Wednesday, September 9, 2009

Two Anniversaries!



My one year blogging anniversary...

and Kaylee's one year anniversary since we went to New York to help heal her "autism". What a roller coaster ride it has been for us, but so well worth it.

Things are going great lately, I just started a part time job doing data entry at home so I am even more busy than I was before. I don't want this blog to be a place where I blabber on about my life, but I record some of my experiences and how I got through them to help others. But most of all, I am having trouble trying to express what I want to say on this blog, and lately I have been battling discouragement with it. I wonder if it really makes any difference if I write in it. At least now I can remember everything we have gone through in this journey, though.

Kaylee is doing so well, I took her in for speech therapy (actually its "language therapy") because she has some difficulties saying things she wants to say (her syntax is off, for example), but all in all she is much much better. The transformation in her from one year ago is almost unbelievable.

An interesting thing happened with Kaylee's speech therapy that I have mixed feelings about, Kaylee's speech therapist told me she had never seen a child with autism recover like Kaylee has. In fact, she told me she thinks autism is overdiagnosed and she doubted that Kaylee even had autism. She went as far as questioning whether a doctor had diagnosed Kaylee with autism...

Two years ago this past August a developmental pediatrician diagnosed Kaylee with autism and sent us on our way. This doctor told me there was nothing we could do about it, no "cure", and she could not even tell me how severe Kaylee's autism was, because she said it was hard to tell but she said Kaylee easily fit the diagnosis for autism. I will never forget the look in her eyes, I could tell that she knew what we were in for...I wondered how she could have a job like this; "breaking the news" to parents that will start them on a difficult journey without much help or hope along the way. Yet another child lost to this monster we call "autism".

But I digress, I was actually quite mad about what the speech therapist said. Dan and I have been through the fire these past two years after the diagnosis, dealing with tantrum-filled days, sleepless nights, and a child who was totally in her own world. We have spent thousands of dollars to get her back. We want other parents to know that AUTISM ISN'T REALLY AUTISM. These kids are sick and they need help: medical help!!!!!!

My daughter did have autism, and it's great that even an experienced professional can't recognize it anymore, but unfortunately it still supports the ignorance that exists and the belief that autism isn't treatable when in fact, it is. These kids are sick, they are unhappy, and they have incredible strength to get through the day and do the simplest things. My heart breaks for them. People need to WAKE UP before we lose more children!! And trust me, we will. Things are not getting better. Now a recent study has shown that 1% of children have autism.

So even if I feel like this blog isnt reaching a lot of people in a Jenny-McCarthy-like magnitude, at least it may help one child, one day, to get the help they need, and in that case it will be well worth the work.

Tuesday, August 18, 2009

Some of our Special Diet Staples

Since Kaylee is on such a limited diet and has so many food intolerances, and it's so difficult to find foods that she can have without symptoms, I thought I would share some of the products we would be hard to live without, for those who would like some pointers about which foods to feed their allergic child.





Corn Thins are like rice cakes only much thinner, which I think makes it tastier, and Kaylee loves them as a bread substitute for her "PB" and Jelly sandwiches. I think these taste a lot less "cardboard" like than regular rice cakes.













Believe it or not, regular store bought tater tots and fries have soy and lots of preservatives in them. Kaylee could not tolerate them, so I was ecstatic when I found these at Whole Foods Market. The kids love spelling out words with their Alphatots! :)








I once saw a You-Tube video presentation of an autism-mom doing GF/CF cooking and she ground up these Veggie-Chips and used them as a coating for fried chicken nuggets. I have been doing this ever since and it is a delicious gluten free coating! I use a food processor and pulverize a bunch of bags every once in a while and use them in place of bread crumbs in any recipe!




I love to use this when frying chicken nuggets or cooking anything or in place of shortening in any recipe (such as cookies or homemade frosting). It works just as well as Crisco but its much more healthy for you because it is trans fat free.







This is ghee from Purity Farms as a butter substitute. Its actually butter with all of the milk proteins extracted. I assure you its totally safe and good for people who cannot tolerate soy or milk, but dont want to use margarine which is full of trans fats. I actually get mine from Wal-Mart!







I love love love this product! This is our peanut butter substitute, and it tastes really good! A great thing for a picky 4 year old eater, its for those times you just want to make a sandwich and not cook something (which I feel like I do all of the time). Kaylee loves to dip apple slices in it. I also make really yummy Sunbutter cookies (just like peanut butter cookies! and they are GF/CF!) You can find this at Walmart too!

Another real blessing are these allergen-free chocolate chips by Enjoy Life. They are gluten free, dairy free, and soy free. You can't find chocolate chips anywhere without those ingredients. And who doesn't like chocolate? I make Kaylee chocolate chip GF muffins and the whole family loves them! Even though they are GF!

Here's to good eatin' even if you are on a restricted allergy diet!

Thursday, August 6, 2009

Kaylee Surprised Me...

Kaylee surprised me yesterday morning when she told me, "Look Ma! I made a person!"



Ain't it cute? See the arms are coming out of the sides of the head? You can't see it but this person has some stick feet and legs, too. I couldn't believe she made it herself until I called my husband at work and asked if he did it! Sure enough Kaylee did it all by herself!

Why is this so cool? It's because it represents another developmental milestone for her. Not only does that take fine motor control, but much more maturity cognitively speaking.

A year ago, this kid was eatin' crayons and the paper labels on them.

This year, drawing pictures!!!!!!!

I just remembered that her IEP for school was to draw a face with eyes and they were going to work her through one body part at a time and here she does the whole shebang!

Tuesday, July 28, 2009

Update Time!

I better get another post in for this month! Otherwise I will have only one for July!

I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.

We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)

If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!

Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.

What a far cry from a year ago.

I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.

I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.

And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.

Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!

Sunday, July 5, 2009

"Soul Work" Article

Did you ever feel mad at God? Did you ever question Him, feel like He was cruel to you because of your circumstances? Because of the unfairness of your child's disability? Did you ever feel like God's expectations of you were too much? Did you ever feel like God's grace wasn't enough for you to get through?

I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.

In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.

This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.

Friday, July 3, 2009

Keepin' My Eyes on Him

I could have saved myself a lot of trouble. I could have trusted Him in the first place.

Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.

One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.

Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.

So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?

Then, there was silence. My mind was quiet.

In that silence I heard something from inside. I heard "Keep your eyes on Me."

But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.

In that moment, I knew He could, and He would.

The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.

It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.

Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.

Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!

Tuesday, June 30, 2009

The ATEC

Months ago I found out about a free online exam, the ATEC (Autism Treatment Evaluation Checklist) made by the Autism Research Institute (it is statistically reliable) that evaluates the efficacy of any treatment you are using on your child based on your report of their "autistic symptoms". The lower the score, the better. This checklist evaluates areas such as speech/communication, sociability, sensory/cognitive awareness, and health/physical/behavior.

On January 12, 2009, Kaylee scored a 50 on the ATEC.

On June 11, 2009, Kaylee scored a 12!!!!

If you are interested in scoring your own child with the ATEC you can find this here.

Wednesday, June 17, 2009

Kaylee and Mommy Update (A long-winded post)

When I have been thinking about what to post on my blog lately, I feel like I am a dry well. Not because things aren't happening, but because I am totally and utterly spent. For weeks I have been in survival mode. My creative juices were drying up and I felt like I couldn't write a good post. Exhaustion and a perfectionism like that make for a no-posting kind of blog.

I have been determined not to make this a place where I vent and complain about my circumstances, my purpose for this blog is to honestly document my journey in living with and attempting to heal my daughter's autism.

So here is an update of whats going on: Kaylee is doing great! I can't say it enough. She is so easy to get along with, tantrums are nonexistant, she is effortlessly potty-trained, she's happy, interacting, playing, in the "that's mine!" stage.

As for me, I am struggling. This story started over two months ago, Kaylee's behavior was impossible and I was frazzled. Every free moment I was either taking Kaylee to stressful allergy testing appointments, attempting to cook new foods for her (and failing) and there were many other commitments I was trying to keep, besides caring for 3 very young children.

I was so stressed out I felt like I couldn't rest. Even if I was sitting still, I felt worried and wound up. I felt like I was always on the edge.

I felt so alone, I had no peace. When I read the bible it felt like hollow words to me. The words of my prayers seemed to drop like cement the minute they left my lips. I felt weary and burdened.

I remember telling Dan, my husband, I had this vague sense that something was really wrong with me, but I couldn't figure out what exactly it was. A few days later a peculiar rash appeared on my legs, and my feet swelled up. I was concerned but when I woke up the next day the rash had gotten worse and spread.

I went to the doctor and finally after many tests they figured out that I had vasculitis. That means my immune system was attacking my own blood vessels. The doctors had to check me for some serious diseases, like lupus and cancer, which came out negative. It was quite a scare for me.

But even today, 6 weeks later I am left with the aftermath of this illness. I have very painful sores on my legs and feet and its very difficult for me to get through each day. I have to go to wound care specialists a few times a week, because my skin isn't healing very well.

I am not sharing this to get pity, I am just trying to be real about what my life has been like. Times have been hard lately. The most difficult part was when I felt like God was so far away. The truth is, it was me who was far away.

It occured to me though, that everyone goes through hard times. As far as I know, the death rate is 100%. Everyone's health fails at some point in their life. Being a christian does not save me from trials and troubles. That is a far cry from what some of the pastors are preaching today. How disappointed are so many people when God doesn't give them what they want or when He doesn't save them from their circumstances? How many will have a love that waxes cold because they only know the gifts and not the Great Giver?

I think these circumstances brought me to a new level of fellowship with God. I feel pleasantly broken. Yes, that's the best way I could put it. I was very humbled by my circumstances and I reached out to God and accepted with joy, His will for me at this time. After that I felt so free!

The Good Lord is forcing me to rest (I have to have my feet up as much as possible). He is forcing me to trust Him. He is forcing me to ask Him for strength to get through each day (sometimes its each hour). He is forcing me to reassess my priorities. Yes I may have sticky floors and two bathroom sinks that need cleaning. I am learning to be okay with that.

Gee I think I have been all over the place on this post. I apologize. It's the best I could do right now.

Monday, June 8, 2009

Kaylee is 4 now! And a whole lot different...

This week, Kaylee turned 4.

To many other parents, birthdays are nice and a joyful time...
but this birthday, to this parent, this year, was so special.

This year, Kaylee was here. She was with us in a way I wondered if she ever could be.

Today, I am thinking about Kaylee's birthday last year. She was sad. She was unhappy. She didn't understand what was going on. She ignored everyone who came to see her. She just didn't get it.

This year she asked me all day when we were going to have her birthday party. She excitedly hugged everyone as they came in, running out side to greet them. She drank in, with joy, as everyone sang Happy Birthday. She knew she was the special girl of the day. She was so happy.

This year we asked her what she wanted for her birthday. She replied, "ummmm...a birthday cake...and sprinkles...and candles....and Auntie Cher and Grandpa to come over!" I got right to it and made her special cupcakes that she could tolerate, and thankfully, she loved them, and her Auntie and Grandpa are so tickled to finally get some much anticipated attention from her!

The changes in Kaylee are unbelievable, when I think about where she was a year ago, we are so blessed to have come this far.

Now, the new problem is...this girl asks me if we are going to have a party everyday!

Friday, May 29, 2009

What if it's not Autism Presentation

If you are curious and not much of a reader, I recommend watching this presentation by Dr. Michael Goldberg who discusses why the NIDS doctors treat autism like a disease. Very understandable yet very scientific!

Wednesday, May 20, 2009

Why we think this allergy treatment will help Kaylee

The immune system is an extremely underappreciated entity. We take this very complex system for granted everyday, until it fails us and doesn't perform the way we expect it to. Our immune systems are so powerful it can kill through a hyperresponse (anaphylaxis) or a hyporesponse (e.g. AIDS). There is a spectrum of reactions ranging in between these responses. Kaylee suffers from (and so do most, if not all ASD kids) both sides of reactions. She is hyporesponsive to viruses, bacteria, and yeasts and hyperresponsive to everything else. This is the earmark of immune system dysfunction.

When Kaylee was tested for what she would react to, we were surprised that she reacted to almost everything, some things more than others. This is significant because it gives us a clue into how her immune system is functioning (or better said dysfunctioning) at this time. Her mild reactions to everything shows us that her immune system is in overdrive. So when I say "allergies" for Kaylee's reaction, it's because I don't have a better term. Kaylee is reacting to everything but it isn't always an allergenic response: it's an inflammatory one.

These allergies aren't just a nuisance for Kaylee, they are causing her body to be in a chronic inflammatory state (and by the way...yeast loves inflammation). Now her immune system doesn't know what it's doing anymore, its just firing off everywhere at everything. This makes for a not-so-happy-Kaylee. I am guessing she's not feeling so well. She's extra sleepy, crabby, defiant, and more when like most kids are when they don't feel their best.

So why didn't I just use antihistamines for her allergies? I tried and they didn't work. The antihistamine drugs only took the edge off because they only eliminate one chemical pathway in this inflammatory process. In an immune system reaction there are so many pathways that are triggered by chemical messengers, such as histamines, prostaglandins, cytokines (there are lots and lots of these!), and many others. In other words, the reaction is still occuring, and the immune system is still "cued up". Neutralization treatment is the best one because it stops the whole reaction in it's tracks, therefore completely halting the inflammatory cycle.

What I love about this allergy testing is that there is no disputing that your child reacts to something; this cannot be said about blood tests. Sometimes our kids' bloodwork will not show any antibodies to an antigen, but they will still be reactive to it. P/N treatment not only accurately identifies a person's triggers, but it also gives you a way to reverse them immediately, without drugs. I think that is the best outcome I can imagine.

With all of this said, we are hoping to press the "reset button" on Kaylee's immune system by cooling it down to where it doesn't react to everything. Eventually, we hope that Kaylee will soon stop reacting on her own, without her bi-weekly injections.


*These are the treatment vials with the antigens we inject Kaylee with every four days*

Sunday, May 10, 2009

What is this new allergy treatment? Part 1

I have been researching for many weeks now, trying to understand the ins and outs of this treatment Kaylee is receiving so that I can share with others what is really happening maybe a little bit about how it is working.

First, let me say what this is not: this is not what a typical allergist does. They will laugh you out of their office if you ask them about Provocation/Neutralization technique. In fact I called allergists in my HMO network and I was laughed at by one receptionist, but most didn't know what I was talking about. Only doctors from the American Academy of Environmental Medicine actually perform this testing. A most famous doctor that did this is Dr. Doris Rapp.

I wouldn't have imagined I would ever try this because it seemed too good to be true. But the director at the NNY clinic recommended it to me because she has done this with her daughter, and other ASD kids at their clinic who present with the more complicated allergy issues ( Kaylee falls into that most difficult to treat subset of children!)

This is what the testing is like:

First, the nurse injects a diluted substance of whatever antigen we are testing just under the skin (intradermally). This forms a flattened bump that is measured immediately.

In a non-reactive person, the bump either stays the same size or shrinks.
In a reactive person, like Kaylee, the bump swells within 10 minutes and becomes itchy and red. This means the immune system was triggered by the antigen that was injected. This makes the testing objective, because we can't rely on Kaylee being able to tell us how she feels. This is the Provocation stage.

Then, an even more diluted solution of the antigen is injected again intradermally, measured again. If this reacts, it is not the Neutralizing dose. If it doesn't react after 10 minutes, this is deemed the Neutralizing dose. It means that the body does not react to this concentraion of this substance/allergen. However, this won't neutralize the reaction yet because it has to be injected subcutaneously. Sounds like magic, doesn't it? I thought so too until I saw Kaylee get better with my own two eyes.

How exactly is this working? The lower dilution of the antigen activates T-Suppressor Cells in the immune system that, in essence, tell the rest of the immune system "It's alright, guys...this invader isn't worth going after." (a huge oversimplification.) Eventually, the immune system becomes desensitized and that specific antigen will no longer provoke a response. That is because T-Suppressor Cells tell the B-Cells in the immune system to stop making antibodies (which are the body's "invader recognition system")

Yes, this testing is time-consuming, tedious, and difficult to inject a 3 year old girl over and over and over again. She has been a real trooper, though. The doctor is over 70 miles away so we have had to make a few trips up there and break up our testing sessions. You can imagine the whole way up there Kaylee is in the backseat murmuring "No ouchie on my arm! No going to the doctor!"

We still aren't totally finished with all of her testing. So far we have tested a number of things like tree pollens, dust, dust mites, cockroach feces (it's in everything we eat apparently?), 18 different molds, glycerin, many foods, histamine, serotonin and next we will test more foods and grass pollens since those are starting to emerge now. In autumn we will address weeds when they come out.

Wow! Sorry if this is too long of a post. I feel like I have so much to say about this, I hope it is not confusing. I want to cover more about this in my upcoming posts. More to come!

Tuesday, May 5, 2009

Kaylee's Allergy Treatment Update

It's been over 2 weeks since Kaylee's first visit with another doctor, Dr. Oberg, and I wanted to wait to post about her progress since I wanted to be sure before I said this...

THIS TREATMENT IS WONDERFUL!!!

For the past few months Kaylee has been on a strict Elimination Diet (no wheat, no milk, no soy, no nuts, no eggs, no yeast, no chocolate, low sugar, only 3 fruits, no tomato, no dyes, no preservatives) and Benadryl everyday. She has had an air purifier in her room, carpet removed, and everything else a mom could do, and yet her allergy symptoms were not abating. Kaylee still had major meltdowns (Sometimes up to 20 a day. All I had to do was ask her a question) and these really dark "allergic shiners". Not any "typical" allergy symptoms like a runny nose or sneezing, though and that's what used to throw me off.

Nothing has worked for Kaylee until now. Her dark under eye circles are fading, and her meltdowns are almost non-existent, she pays attention much better, her stimming is decreasing again. I find myself constantly bracing myself for her outbursts and I am pleased to find they don't happen! She is about 50-75% better already, and the people in the office tell me she will be at least 90% better in the coming weeks as her immune system cools down. The transformation thus far is such a blessing.

There is so much I want to cover about this treatment, I don't know where to start so I am going to cover it in a number of posts about what this treatment is, why and how it works, and Kaylee's before and after.

More to come!

Wednesday, April 29, 2009

Why My Child? Part II

After all of this time of thinking upon this question, I still don't have an answer that I feel most people desire when they find out their child has a disability. But I prayed and I asked God this very question and after sometime I see that my answer is...

There is no answer! At least not one that we may know this side of heaven...

I don't find peace in believing that God "planned" this for my child. As followers of Jesus Christ, we are not spared the trials that life brings to everyone.

Does that mean that God isn't in control? No, I don't think so.

Recently I read the book of Job and if you don't know much about this man, his story is in the Old Testament. To make a long story short, God allowed many bad things to happen to Job. He lost all of his children and all of his possessions in one day, and soon thereafter he lost his health.

The rest of the book is Job questioning God, knowing he was a righteous man. He didn't understand why God would allow so many bad things to happen to him. At one point in the book, Job's wife told him to "curse God and die." Job replied, "shall we only accept good from the hand of God, and not evil also?"

After all of the questions and suggestions Job received, God finally answered Job. But he didn't really answer. He put Job in his place. "Where were you when I made the earth? The heavens...etc."

Maybe God wants us to stop asking this question.. Maybe He wants us to give up the need to understand (and would the answer be good enough anyway? Would we even have the capacity or the selflessness to understand and accept the reason?) Like a child, we need to implicitly stop questioning our Father and trust that He knows something we don't...

For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts higher than your thoughts. Isaiah 55:9

It all boils down to trusting God. That even when bad things happen and when He doesn't make sense...someone who knows God and knows His character also knows He is good. Even when bad things happen to us.

If there is one thing I want people to learn from my blog, it is this:

There are no guarantees that our situation or circumstance will get better, but God promises that He will be there.

Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. Matthew 10:29

Hopefully, we can all follow Job's faithful answer and reply to our Father:

"Though He slay me, yet will I trust in Him." Job 13:15

Sunday, April 19, 2009

Why my Child?

This is the first subject we are "tackling" in our Wonderfully Made Moms group.

Oh does this open up a door that I have realized I never really closed.

I have asked God this question over and over. When I see other children play. Or when I see a little girl that is Kaylee's age smiling at her mom, talking with her. Or when I see other families who don't know how good they have it when their child doesn't have a tantrum when asked to do a simple thing like "get your shoes".

So why my child? Is there satisfactory answer for that? I am still thinking on this answer and I will share it in my next post.

So how about you? How did you deal with this question? I would love to hear...

Thursday, April 9, 2009

An encouraging website

Please checkout this website if you have some time on your hands...it includes short, homemade video clips by people whose lives have been touched by autism. I like this website because it focuses on encouragement and hope in living with autism. And if you are so inspired, these folks encourage you to make your own and add it to the site!
Enjoy!

Thursday, April 2, 2009

Update

Things have been like a roller coaster around here. Kaylee's behavior is up and down. We will have lots of bad days and a few good ones peppered in here and there, and I am pretty sure its due to her allergy/intolerance issues.

Recently, Kaylee had her Diflucan removed and she got better for a few days and then things got bad again. Then we remove something else and so it goes, its a cycle and just when I think it ends, something else comes up and her behavior gets bad again. Right now I have removed chicken from her diet and its working! But I am not holding my breath because another problem will probably arise. And so it goes with allergies...

Oh April 23 can't come fast enough! I shouldn't be placing all of my hope on one doctor (Dr. Oberg, who is a specialist in allergies and immunology), but the nurse at the NY clinic seems to know this is the key for Kaylee. However, I still place my trust in God, who is the God of knowledge. I know He knows exactly what Kaylee needs.

Right now Kaylee is still on Valtrex and Benadryl daily. She still has dark circles under her poor little eyes. She still has a very limited diet. She still breaks out into hives from certain foods. Here behavior is so difficult to deal with when we have a "bad day". She acts like a kid who is sick, over-emotional, angry, and tired all rolled up into one. Most of our days are "bad days". I would say we have a good day every ten days. This is very hard on me and the kids, too. I pray this ends soon!

On the bright side, Kaylee is really progressing cognitively and socially. She answers questions very well, can follow directions, and initiates play with other children. She especially likes older boys which I need to watch out for...

Tuesday, March 24, 2009

Wonderfully Made Moms

This is the name of a new small bible study group that we are starting come April for mothers of children with special needs. Mrs. Cindy Evans, a godly, kind woman from my church is the one who spearheaded this new much-needed group for the moms who can get stressed while caring for a special needs child (let's be honest...any other children, too!). Mrs. Evans and her husband have also had a successful ministry called Wonderfully Made that reaches out to and ministers specifically to special needs adults in our area through fellowship and biblical teaching.

Mrs. Evans is a mother of a Trent, her grown son with Down Syndrome. He is a kind, intelligent, hardworking young man who helps out in our church by taking care of the sound ministry and taking offerings. He also greets everyone with a smile! Mrs. Evans has her own blog if you would like to visit it sometime!

A few months ago Mrs. Evans approached me about helping her out with this, and I was so elated! This kind of ministry has been something I have wanted to do for some time now, but I wasn't really sure how to go about it. No doubt it is the Lord providentially bringing us together to work together in this ministry.

Recently I have been writing questions that I have been asking God through my journey of raising a child diagnosed with autism. I remember when Kaylee was first diagnosed I was looking everywhere for a book that would help me along this road...but every book I found (yes even Christian ones!) were only about "curing" my child and not how I was to live in it! I had so many questions and I felt so alone. I wished I had an experienced friend to help encourage me along.

That is what I hope this group will bring to other mothers in a similar situation. My prayer is that we can help each other along and bring hope to others. To be a friend and lift one another up in Jesus Christ.


Here are some of the questions we hope to answer and address:
  • Supermom or not???

  • How should I discipline my special needs child?

  • What does God expect of me?

  • How do I cope with my fears and worries associated with raising a special child?

  • Should I homeschool my child? How do I go about doing this?

  • and more...
Are you a mom struggling in raising your special needs child? Are you someone who has some suggestions for what we can discuss or how we can help others?

I would love to hear from you! Please email me at jlhank80@yahoo.com or leave me a comment. And if you know a mom in the Chicago area who is interested in this small group, please send them my way!

Monday, March 23, 2009

Happy Birthday to Joey!


Mr. Joey is 2 years old today!

For his birthday, he wanted his daddy to lay in his teeny tiny bed with him...


Happy Birthday, Joey...March 23, 2007 was one of the best days of my life!


Friday, March 20, 2009

What I have learned about IEP's

For any of the other mom's out there who might benefit from this information about IEP meetings:

1. No matter what you say or request, the "professionals" have made their decision about what your child needs and they will not change it until they deem so...

2. If you have an extra request that costs them extra $$ you better have another "professional" opinion to back you up (such as a doctor, therapist) and even then you should still have a lawyer.

With all of that being said, I am still very thankful that Kaylee has a chance to be with teachers who care about her and understand her disability. I am grateful for a school system that even cares at all about my child with special needs and continues to accomodate her...

I have an aunt who is mentally disabled and years ago they just stopped her schooling because they deemed her incompetent. She didn't even get past eighth grade.

In another country my child would be forgotten and I am grateful for the resources God has provided for her, even if I feel they are not enough.

Dan and I decided that we are not going to "fight the system", but work as hard as we can with her at home and we hope that her getting better physically will be the biggest most worthwhile action we take on Kaylee's road to recovery.

Kaylee's teachers told Dan and I at the meeting that they were impressed with how well Kaylee is improving, and so quickly. As I mentioned before, once we started the NIDS Protocol, Kaylee flew through her IEP goals and objectives in just over 2 months. That was after having them for 6 months prior. Things seem to be clicking for her now.

So for now, I am thankful and not at all angry about not getting what I wanted for her. I believe that God knows exactly what Kaylee needs.

Thursday, March 19, 2009

IEP Day

Today, in about an hour, is Kaylee's IEP(Individualized Education Plan). I am hoping and praying that I have wisdom and kindness while working with Kaylee's IEP team. I have been upset lately after doing some of my own research of the FAPE (Free Appropriate Public Education) Act. Kaylee is not getting an appropriate education by any means. Her school's main objective (as evidenced by her last IEP) is to simply "mainstream" her so she fits in. She gets the bare minimum in services.

Well, again, I trust that my Father will give me wisdom and words so we can help Kaylee be an independent, useful lady who participates and contributes to society.

I will update soon!

Monday, March 16, 2009

The GF/CF Diet...How and why we got started

After Kaylee was diagnosed with autism I got to researching. I read lots and lots of books and found a lot of information on the Internet (much of it conflicting...none scientifically proven, but that's a whole other post) and I don't remember where I heard of it, but I read one of the must reads for autism moms: Unraveling the Mystery of Autism by Karyn Seroussi. Before I read this book I never knew that autism was something kids could recover from. I thought kids were born autistic!

In this book, Karyn Seroussi talks about one of the first interventions she implemented for her son was the Gluten Free/Casein Free diet. This diet is one that excludes all wheat and dairy.

The standing theory is: when our children with autism eat these foods they can become chemicals like drugs that can fog up our children's minds and/or trigger their immune systems. This could be due to the 'leaky gut" syndrome, but nothing has really been proven as far as I know. But one thing is for sure, it has helped many children with autism either recover or at least improve their condition.

Now I was glad that there may be hope for my little girl when I read that, but I wept with an overwhelming fear and trepidation, "how am I going to do something like that????" I was expecting my third child at the time and I had a 2 year old and a 4 month old. Where would I find the time to cook all of this stuff? And what if she didn't eat it?

I believed that Kaylee was a definite candidate for this diet, pending her constant diarrhea, pale sickly look, and her underweight body seemed to be reason enough for me to take this step, scary as it was for me.

First, I took out the milk and replaced it with soy milk. She seemed OK with that.

The wheat? That was the hard part. If you want to go gluten free and you don't have much money (like us), you have to cook from scratch. That's what I did! I found some recipes online to replace what Kaylee's "usuals" were and I haunted the health food stores.

At first, Kaylee didn't like her new diet. I remember when I put the first GF/CF chicken nuggets in front of her. She wanted her Tyson chicken nuggets. She gave me a puzzled look at first and then proceeded to ignore them. I didn't fight her about it, I just let her from out of her chair and eventually she became hungry enough to eat them (this was at dinnertime) and she still eats them today.

After a little time on the GF/CF diet, I noticed that Kaylee's speech increased, and her poops were better, but still not normal. I was disappointed with her lack of growth. I heard of stories about people's kids speaking sentences after their child's gluten-and-milk-induced fog lifted, but such was not our case.

However, that is where I could lead into the next thing: the diet wasn't the whole problem for Kaylee. Later, after starting Kaylee on the NIDS Protocol for awhile I started to see that we were removing her triggers one by one: viruses, yeast, allergies. We are still working on the allergies now. It is important to know that even if your child doesn't totally show an improvement on GF/CF, you may be missing a part of the picture, but still on the right path! I believe that most if not all of our kids with autism have an issue with these foods until they become healthier.

I have been cooking GF/CF for Kaylee for over a year and a half now, and now I have a system that works for us. I will be sharing some of my tips in my next post.

Thursday, March 12, 2009

Wow! Lots of blessings!

Today, I received a phone call and it was the allergist's office telling me they wanted to move Kaylee's appointment up to April instead of June! At first I was so troubled about how long we had to wait for her to see the allergist, but then I gave it up to the Lord and He took care of it. Thank you Lord! Blessing #1!

Then, oddly, I ran out of Kaylee's antifungal and she started acting better! The past 2 days she has told me over and over she loves me and she hugs and kisses me. Her behavior has been splendid! Because she isn't so upset all of the time, she is more social and telling me everything she observes. Today she said "It's sunny outside, it's a beautiful day!". She even said today, "I'm happy! I'm not crying today. I'm all done crying!" Blessing #2! It looks to me like I need to talk to the doctor about that...

And something new happened today that I don't know if I have ever seen before in Kaylee. She laughed at a joke! This is HUGE. Kids with autism (and usually Kaylee) have trouble processing abstract concepts, especially jokes. Blessing #3!

She is answering questions in a cute and creative way. I asked her today:

"Kaylee, what does a frog eat?"

She exclaimed, "A frog eats...um...chicken!"

Hmmm...I would like to see that one!

Monday, March 9, 2009

Yet Another Mountain to Climb

I can't believe it! All of my kids are sleeping at once! That never happens...it's nice.

So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.

I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.

*Sigh*

The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.

*Sigh again*

Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.

But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.

About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.

Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)

Thursday, March 5, 2009

When a Mom Can't Make It All Better

Tonight, I cried...

Most people would think is was about something silly. On the surface, it sounds so...

I cried because I couldn't give Kaylee ketchup with her dinner.

Kaylee cried, too. I know it wasn't about her not getting her way; she was wailing with grief and disappointment. All of the things she couldn't have were adding up on her. For months we have told her "You can't have this" and "you can't have that", slowly taking away all of the foods she loves.

So far we have cut out wheat, milk, egg, chocolate, soy, and most of the sugar. And now, her beloved ketchup.

As she cried I went to her on my knees and cried with her. Inside I understood and felt her pain with her. This poor girl. She is so strong. Who knows what she feels and what she is going through?

And there is nothing I could do to help her pain but hold her and apologize. When I went to her and said "Kaylee, I am so sorry." and held her, her tears soon subsided. But inside me I felt this horrible grief and it won't go away.

It is an agonizing thing me to feel, to watch and know my child suffers and not be able to do anything about it. For over 2 years I have watched Kaylee suffer though autism with sensory issues, anxiety, blood draws, yucky medicines 3 times a day, unable to eat what others eat, loneliness, being misunderstood.

All of these things for a little girl to handle. When I really think about it, I could despair.

So tonight, I laid in bed with her and I prayed over her and told her "Kaylee, I am so proud of you. You are so strong and sweet and I love you so much. God loves you, too and He is taking care of you and giving you what you need to get through this. Someday I know you are going to do great things for Him."

I don't know if she understood me, but I understood in my heart. She is in God's hands and He will care for her, He gave her a Mommy and Daddy who love her enough to do what is right even when it hurts, and will love her and help her through. We may not be able to fix everything, but we will be there.

That's right. He knows exactly what she needs.
Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4

Monday, March 2, 2009

A cookin' fiend!

That's me lately...I have been burning things up in the kitchen. My wonderful husband was my hero and helped me late at night, too. (It's really hard to cook while holding an 11-month old.)

Last night we made Gluten free/Casein Free Meat Puffs. I didn't want to put a picture of them up here because they look gross! They taste awful too, but Kaylee loves them and we hide beef, carrots, sweet potatoes, and zucchini in them.

The night before that we made a bunch of GF/CF/Soy free/Egg free pancakes, too. Then I freeze them, because it is so convenient (and necessary!) to have stuff already made and ready to pop in the microwave.

The reason for all this cooking is that I am yet again cutting another ingredient from Kaylee's diet because I have to be totally sure there is not a food allergy going on and that ingredient is soy. And soy is in EVERYTHING! So basically I have to make everything she eats from scratch now. But that's ok. She's more than worth it!

Dr. Russell didn't tell me to do this, he told me he doesn't think her diet is the culprit here for her allergies and the return of her "bad poops". I think he's right but I need to be totally sure. I will be finding more out about that very soon, I believe.

So that is all for now...May God be with you!

Wednesday, February 25, 2009

A Blessed Day

Today was one of those days I will always cherish...

I just enjoyed my kids so much. It was warm outside, the sun was shining and the snow was melting. So I decided to take the kids outside to play in the mud.

Then we came in and ate dinner together, and finished it off with some popsicles!



And did I mention it was a tantrum-free day? It was.

Ahh. So this is what "normal" feels like?

I would like some more days like this, please!


And on days like these, I don't mind if I have an extra load of laundry...



Children are an heritage of the LORD: and the fruit of the womb is his reward. Psalm 127:3


Monday, February 16, 2009

Ahhh...the Adventures of Motherhood

Its been a while since I wrote on here. Things have been crazy, I mean, how does one person get sick twice in one week? When they have kids to propagate germs of course! That was me this week, sick as a dog with a stomach bug and then a bad cold right after.

Anyway, here is a quick update on how things have been. I found out this past week by accident that Kaylee + Zyrtec = Crazy, defiant Kaylee. I took her off of the Zyrtec and her behavior got much better.

But after I took her off of her allergy medicine, she started acting really weird, all hyper, she had hives on her face, and her behavior was still icky. For instance (for those who want to know) I could not ask Kaylee a question because she couldn't answer it without getting upset by saying "yes/no/yes/no". Kaylee also has mushy stools again, which is a clue that there is a food that she is eating and not tolerating. (Most moms of kids with autism end up with a "poop obsession", if you cannot already tell...)

Now that there are more food allergies we have found, it appears that it is an allergy to either chocolate or tomato or both. Poor kid. She has such a limited diet. If I have to cut out anything else I am in trouble. I don't know what she will eat besides plain chicken and boiled water!

I am trying to find things to make up for what she misses now. For instance I just spent a whopping $6 a bag for some stuff called "carob" chips and dairy-free white chocolate chips! I also found some "No-mato" catsup online for $6, too. It's made with carrots. (Yum, right?) We'll see what the verdict is on that soon...

Otherwise, when I cut these allergies out, Kaylee is an angel. I mean, no resisting about anything! She is a joy. In fact, thats what her name is: Kaylee Joy, because we knew that's what she would bring when she came into this world. Oh how I hope and pray things can stay this way! She is so much happier, and I think she feels better.



On a silly note, if you are wondering about what a taste of being a mom of 3 kids of three years and under is like, take a look at a sample of what I sweep off of my dining room floor!


*sigh* A woman's work is never done!

Wednesday, February 4, 2009

His Grace is Sufficient


I am back now, and I feel better.

No, this isn't because my circumstances are better. My daughter is still very anxious and I am still waiting for the doctor to get back to me about it.

But I have peace that passes all understanding, thanks to my Heavenly Father. I think I understand now that this is God's will for all of us in our family. But I think of what Paul said when he asked God to remove the thorn from his flesh, but God replied to him (I am paraphrasing) "No, but my Grace is sufficient for you"

The problem with me was, I didn't want to accept God's Will for me at this moment. I fought the reality that was. Yes Kaylee is improving, but we are still working on things and they could be better right now. Like I heard a pastor say on Sunday: "When you are flying on a plane, you can fret and fear all you want... but that plane is still going to land in that destination, whether you like it or not." (Well most times anyway...but thats not the point here)

I used to pray without ceasing "Lord please help Kaylee get better." Now, I still hope and pray for that, but I ask for strength and grace for me, Kaylee, and the rest of the family to be joyful and strong in living with the everyday struggles.

And I know He will supply those things, because He always has in the past. And it is so nice to be joyful again!


*Kaylee loves sleeping with her "baby" every night. As you can see, they have matching blankies :)


Thank you to those who prayed for me.

My brethren, count it all joy when ye fall into divers temptations;
Knowing this, that the trying of your faith worketh patience. James 1:2,3

Saturday, January 31, 2009

Feelin' like I'm wilting...

I have been thinking I should change my blog name from "Blooming where God Plants me" to something else, because lately I have not been blooming, it's more like wilting. I would feel hypocritical and unreal to say that sometimes these neverending challenges and discouragements don't get me down.

Kaylee is doing BAD, behaviorally speaking, and it's really bumming me out. I don't understand what is going on. She was doing great when I cut out eggs from her diet and now I am back where I started.

I would love to put a video clip of how she is acting on here, but I don't want to embarrass her for the sake of me getting some sympathy. Hopefully, someday she would get mad at me for exposing her like that.

Something is very wrong with her and no matter if I am patient with her or if I get mad she is still acting very bad. Her behavior is so bad, I can't play with her, I can't change her diaper, I can't take her anywhere. So if you don't hear from me for awhile on here, now you will know why. Please pray for me.

Friday, January 23, 2009

Training Up Our Children

These past few weeks have been particularly trying, in respect to Kaylee's behavior. Everything is a fight, and her will is very strong. She doesn't want to do anything she is asked to do.

For example, we took her to a fun McDonald's Play Place this week, and ordered her a burger without the bun which she normally has no problem eating. This time she decided to put up her dukes and not eat. So we left her at the table and she could not play until she ate the burger. She screamed and screamed so we left McDonalds. She screamed more.

But I was still not backing down. She knew exactly what was going on. We went home, and she went in a high chair I placed the burger in front of her and sat with her and told her "I love you Kaylee, you are such a good girl" while she ate that burger with joy.

For those people out there who wonder, is she just a mean and cold person? Why is she telling this story? This is for all of the mama's out there who think that they can't discipline or train their child because they have special needs (or any other excuse...and there are lots of them if you want to find them!) Don't let your child bowl you over because you feel sorry for them or are afraid they don't understand. They need you to be their parent.

Did you know that the bible says if you spare the rod (or do not discipline) you actually hate your child (Proverbs 13:24)? Why would God use such harsh words? Surely we love our children...that is why we do not want to cause them pain...

But the word of God tells us that foolishness is bound in the heart of a child...so should we let them be the boss? No.

God's word also says to train up a child in the way he should go. Do I want my child to continue on her own foolish way? No. I want her to respect and obey. Because if she isn't taught to obey me now, she will not obey me in the future, and surely not her Heavenly Father.

God uses the word hate because we rob our children of their future if we do not train them today. The consequences are great. Our small consequences now can save them from grave consequences in the future. That is why it says in the bible that if we love them, we will chasten them (Prov. 13:24). Even our Lord Jesus Christ chastens those whom He loves (Rev 3:19). Let us be like Him and love and train our children.

This does not mean that we as parents, have to employ spanking always in our discipline, but that we make all of their negative attempts to get what they want counterproductive. An example of this is a child screaming/kicking/crying to get a cookie. If we give in to their bad behavior and give them a cookie, we are actually reinforcing that behavior. When I encounter this from Kaylee, I slowly and kindly say, "No Kaylee, you don't get a cookie when you scream and cry like that. You need to ask nicely next time."

Then I brace myself and ask God for strength and wisdom while she gets upset. I just trust what God says in His word, and I trust that what I am doing is for her good, then I can be strong and handle her "not liking me" for the moment.

If you would like more ideas on disciplining your child, special needs or not, try this book, it has a lot of creative solutions on how to deal with problem behaviors in toddler to teenage years.

Thursday, January 15, 2009

Another Piece of the Puzzle

I have been experiencing too many problems with Kaylee and I knew something has been wrong. She had recently begun taking Singulair for allergies and Lexapro to help restore blood flow in the brain. But Kaylee became hyperactive, excessively irritable (notice I said excessive, she usually has irritability anyways), and I couldn't reach anyone to find out what to do because of the holidays! First I stopped giving Kaylee the Lexapro, and the problems persisted so I discontinued the Singulair.

I just knew something still wasn't right but I couldn't put my finger on it, so to speak. Three days after we stopped the Singulair, Kaylee had hives.

Day after day this kept happening, each day getting worse, with Kaylee's hives getting bigger and her behavior getting worse. She started to get diarrhea and her nose kept on dripping and she was not sick. When I thought about it, I noticed a pattern emerging: it was happening after certain meals...Kaylee never displayed any with foods before, but now everytime she eats anything with strawberries she has an allergic response.

Now that Kaylee's immune system isn't needing to address her viral and yeast issues because of the medications she is on, her allergies are flaring up.

Right now I am scaring myself a bit, because I am wondering if Kaylee needs the Elimination Diet to identify any other possible triggers. Our number one priority in the NIDS Protocol is to cool down the immune system, and if the foods she is eating are causing an immune response, we have to find a way to decrease it. If her immune system continues to act up, and even more difficult, I believe that she may need the Rotation Diet to prevent any new allergies to food.

Maybe I will make a post explaining more about food allergies and more about the basics of immune system function soon. I need to brush up on some of it myself. I believe it is extremely important to understand the immune system if you have a child with autism because it is a key issue, if not one of the most imporant one.

If you want to do some research into food allergies yourself, check out the book Is This Your Child by Dr. Doris Rapp.

In the mean time, may God bless you richly with His wisdom! (James 1:5)
-Jennie

Sunday, January 11, 2009

Awwwww!


Yesterday, a dream came true for me...


Kaylee came up to me and said "I want a kiss" and puckered right up to me!

It gets better...



Then she said "I wuv you."

And there's more!!!!

She sat in my lap and put her head on my chest and let me hold her! I tried not to distract her with the tears in my eyes, I was afraid she would leave and the moment would pass.

The last time Kaylee reached out to me like that, was on a warm summer night and Dan and I went for a walk, and Kaylee was on my shoulders. Then she turned my head toward her and kissed me... That was over 2 and a half years ago. Yesterday, I saw my baby again and my heart is so happy.