Changes and Reflections...

I have decided that even though, at this moment, I cannot take Faith off her Pediasure, I am going to start cutting out all other dairy in her diet. This is not easy for me to do, because I lack in the following through and consistency areas...believe it or not!!

So, I need to edjamacate myself in what the labels say, what stands for dairy, (what cheese CAN she eat??)etc...and my alternatives. At this point we are just making the change for her. We are not big milk/dairy consumers, so it is not too hard (except for the cheese!!). We will make her a dairy free pasta meal and freeze it in single portions and whenever we have a dairy meal for supper (or lunch) we will pull out hers and that way I am not cooking 2 meals...

Definitely a different way of thinking for me, again...I always swore that I would never make 2 meals...everyone was going to get what they got and enjoy it...no restaurant service here! But, if it really is an allergy then I need to accomodate Faith...or whichever child it was...but I am still about convenience...so I hope my plan works...I will keep you updated:0)

Any help in this new way of life for us is greatly appreciated...:-)

Now, this change has me reflecting again...what is up with that? I am back to square one with meds...(vitamins now) but everyday Faith is getting some kind of pill...I am becoming a pro at crushing pills, splitting them over many days, learning the amount of applesauce to mix them in...holding a mouth open, and then closed so she takes all of the pill...

The reflection here is that I am just relearning what I have been doing since the beginning, but now she takes these orally...it was so much easier just putting the meds in a syringe...(I am not complaining about no tube...trust me!!). I am seeing how much she has grown, that I have to do these extra steps now. This is also different, because we are not treating a symptom, we are helping to balance out her body and being...

We also do our funky new teeth brushing/gel/paste regimen at bedtime, along with the patching of her right eye and we are starting the compresses for her liver tonight too...and to add to this fun, we realized last night, as we went for our first swim this year, that we haven't bought her ear plugs because of her tubes...one more thing on the list.

Also reflecting and looking forward to more weeks like this one, where there are no appointments. I couldn't get over that fact when I looked in the daytimer at the beginning of the week. I looked back and it had been over a year (as far as my book goes) since we have had nothing planned for Faith. It is a definite positive sign and the light that I really needed to see... so I am enjoying my week...

We are on a break from therapy appointments until September, we don't do any out of town hospital trips until August and that is about it...

Anyhow, I am gonna run...I feel like I should be doing something, but have no energy, so I am just going to chill out on the couch and think about all the things I should be doing. Have a great sunny day everyone!!

The Naturopath Visit

Yesterday we went to visit with a naturopath, that had been recommended to me by a friend.

I am so glad that we went...it all makes sense now!!

He took her history and current conditions and while doing that, Faith fell asleep. He had me lay her on the table, and she actually stayed asleep!! He uses applied kinesiology (which was a new term for me), and it was really cool to watch.

He would do different hand and finger motions around her legs, and head, and other parts of her body and then give her legs a little pull. He said that it is almost like he is asking the body questions and then it answers, by the leg lengths changing...fascinating!!

The first thing that he found was that Faith has a milk allergy. As soon as he said that I thought, he knows what he is doing!! I had mentioned to the docs in the beginning that I thought maybe Faith had an allergy or intolerance, which would explain the reflux issues that she had. I suggested maybe trying the soy based formulas and they said that they were actually not that good for a baby, because they have been proven to cause allergies...I don't know...it was just nice to know that someone actually verbalized what I have been thinking over the past year!!

Then he said that he found a deficiency in B2 and B6, and that her liver was a bit toxic. Also that there is a lot of bacteria in her digestive tract.

We came home with a vitamin regimen, which isn't going to hurt her to try, a probiotic that won't hurt to try out either and a castor oil compress on her right ribs and tummy area. Not too bad? And we will be picking up some anti-seizure homeopathic drops for her to use as well.

He also took some time to give her some drops in the office to help with her emotional trauma from her birth and all the stuff she has been through. It was just a few homeopathic drops, from flowers. All in all, it was a pretty cool appointment.

We are looking forward to going back after we talk with the pediatrician. I want her to be involved to some extent in all this. If we do all we can do and there are still seizures happening, then we will obviously revisit the whole phenobarb idea. We just want to know that we tried everything, that is possible for us to try, first.

Chocolate Sandwich Cookies

I made this with the kids yesterday and then the preschoolers at church stuffed them...it was such fun watching them do this. The tongues and fingers and all that fun stuff...their families will be pretty brave if they eat one of their homemade oreos!! Anyhow, they had a lot of fun and couldn't wait to show their parents.

Some people would like the recipe so I am going to post it here...

Both taken from The Old Mill Cookbook

Chocolate Sandwich Cookies

Ingredients:

Cookies
1 cup soft butter
1 cup sugar
1 egg
1 tsp vanilla
2 cups flour
1/3 cup cocoa
1 1/2 tsp baking powder
1/4 tsp salt

Filling
1 1/2 cups icing sugar
1/3 cup soft butter
1/2 tsp vanilla
1-2 tbsp milk

Method
1. In a large bowl, cream togeher the butter and sugar until light and fluffly.
2. Add egg and vanilla, and beat well.
3. In a seperate bowl combine the flour, cocoa, baking powder and salt.
4. Gradually add this dry mixture to the creamed mixture in the large bowl. Chill dough until ready to handle.
5. Roll small portions of dough to 1/8" thickness.
6. Cut with 2" cookie cutter (or glass lip, etc) and place on ungreased cookie sheets.
7. Bake at 350 for 8-10 minutes. Cool on racks.
8. Combine filling ingreients and mix until smmot and creamy.
9. Spread filling over half of cookies and cover with remaining cookies. Store in air tight container.

Steps 5 and 6 I just rolled them into little balls and flattened them in my hand before placing on the cookie sheet. It worked just as well. The cookies don't change in size at all while baking.

I also made a white cookie, just in case we had allergies to chocolate...They turned out good too.

Bill's Favourite Cookies

Ingredients:
1 cup brown sugar
1/4 cup butter
1/2 cup shortening
1 egg
1 tsp baking soda
1/4 cup water
2 cup flour
1 tsp cream of tartar
1 tsp vanilla

Method:
1. In a large bowl, combine the sugar, butter and shortening, and mix well.
2. Add egg, and blend thouroughly. Add vanilla.
3. Dissolve soda in wter, and add to the creamed mixture.
4. Combine flour and cream of tartar, then slowly add to the creamed mixture.
5. Shape into small balls, then place 2" apart on a greased cookie sheet.
6. Press lightly with a fork.
7. Bake at 375 for 8-10 minutes.
8. When cool, sandwich together with ham.
9. Chocolate chips or chopped cherries may be added to the dough before shaping, for variation.

I added butterscoth chips, to add to the flavour a bit. I also just filled them with the same filling as the chocolate cookies, though a jam in the middle would be really nice!

Enjoy, and have fun with these, include the kids too. It is a great activity and wonderfully time consuming:c) I mean, interactive...

The Guessing Game...

My favourite kind of shopping is coupon shopping. The idea is that you don't spend any money at all, if you can help it...

The guessing game is, how much did we, me and my friend Cheryl, spend on this trip?

We came home with:
4 boxes of 515 G Corn Pops
2 boxes of 850 G Mini Wheats

25 boxes of Froot Loop Straws



11 boxes of Nutrigrain Bars



19 boxes of Rice Krispie Squares



Total Cost = 114.41




Actual Spent = 18.55


Savings = 95.86


The 6 cereals we came home with are on sale at Price Chopper this week. $3 a box and look for the ones with the $10 in coupons on the back!!


Anyhow, fun times with coupons!! We are good for school snacks now until the end of the year!!

Emotional Train Wreck...

What a day, I guess this is hitting me so much more then I had expected. I have way too much going on in my life right now and I wish so much of it could be gone, but it cannot...

First, I had to fax in my girls immunization records today. If I don't get it to them by Tuesday, they would both have been suspended from school for the last week. It doesn't make any sense to me.

I got them faxed in, no problem, and when I get home, I get a phone call almost right away. It is public health and they say that Cutie Pie needs 1 more shot to be up to date. I said that my dr had said there were no real guidelines that she could see and to send it in anyways. I asked if she was ok to wait until next year (she isn't even going next year) since they could see that we were still in the process of having them all done.

NOPE!! If she doesn't get her needle by Tuesday she will be suspended for sure. How frustrating is this?

Now, I am a pretty private person, I try to keep my emotions in check, but after my last 3 weeks, I am no longer that same person.

I burst into tears on the phone. I said that I was already dealing with numerous appointments with my one daughter, dealing with the diagnosis of epilepsy, just getting over a seizure yesterday and I basically verbally vomitted all over her.

I never got angry with her, or yelled at her. She kept telling me to calm down, relax, I can bring my daughter into their office and do it there, since it is easier then having to fax it in again. I felt really badly about doing that, but it is good for them to see what kind of stress they put some parents under. I really don't think it is fair if they can see that there is an appointment set up and that the protocol is going to be followed...hmmm...

Then, I composed myself for my next appointment, wiped my eyes, tried to get rid of the redness and swelling...breathed...and welcomed the next group of people in.

We have been working on her temperment scale, and she is typical in some areas, but extremely atypical (?) in other areas. She is definitely more active then the typical 18 month old. I knew it!! But we should be getting her out and running around, keeping her away from certain things, making the house a safe place...

This is so against what I have always done. You know, Houseproof the child, not childproof the house. But, with her activity level comes all kinds of consequences, that really, I don't want to deal with...so, having the gates up (which I never needed before), the locks on the cupbards (which I again, never needed before) and stuff like that. I will never again make comments about people not setting proper boundaries for their kids...

It is easier, my worker told me, to handle one or two boundaries at a time. So, just make those ones the ones that you can't change. Everything else will come in time...there was other information there, but when we got to the mood issues, which again, were atypical (?), I burst emotionally again...

We were told around 3 weeks ago, that Faith was diagnosed with epilepsy. I know that. We were actually elated, because it meant that if that was the only problem it was going to be fine. Then we went on to have a grand mal seizure, and another focal seizure. Now it is real. The way that the seizure happened yesterday showed me that Faith could, and probably is, having seizures periodically through the night. It would explain her behaviour, her sleep patterns, her moods, her aggressiveness...it makes sense.

But, it also makes this diagnosis real for me. We are Christians, we believe in healing, but I am also not an extremist, and I live in reality quite well. Now we are talking about medications, and life...but not our own. Someone elses. We are now making huge decisions that will affect Faith for a long time. And me, I feel like I have finally lost a battle...I feel like I am done, this is it, this is where we are at and we can't just pretend that it is not happening anymore...

Here is probably where I stop making sense of everything. My worker is awesome, she talked me through a lot of what I am feeling. I think a big thing for me is that I have always remained strong, questioning, sometimes, but strong. For 18 months, I have hoped and prayed, I have watched and acted and made decisions whenever they were necessary. For 18 months, this is what my life has consisted of. What I haven't done is grieved...I lost the "typical" child that we dreamed about and hoped for. But I couldn't bring myself to grieve this loss, because I have always been fighting for her.

Don't get me wrong, I am disappointed, a bit, but I am still thrilled to be on this road instead. I again, say that this is my Holland. I am finally at a point where I am accepting this to be where I am. I am the mother of a child who has epilepsy, and is having seizures. I am learning to guide our family through this transition, I am learning to find the good in this situation (and I know that there are some, somewhere). But, I am still grieving that original loss. If any of that makes sense...

So, there, none of it will make sense to any readers, but I needed to get this out so I can figure out where I stand right now...this has been long enough...

Accepting and Juicing....

So, Faith has been diagnosed with epilepsy. I believe that I posted that back after that appointment. We held off on medications because we didn't want to mask anything. Faith has now had 2 seizures in 2 weeks, so they seem to be coming closer and closer together. One of them was a grand mal (2 weeks ago, not documented) the other one was yesterday (complex focal, I believe). I am finally starting to accept that she has this condition...we also have accepted the fact that a lot of her behaviour during the day, and her sleep habits, are probably because she is having seizures through the night that we don't know about...

We spent the entire day yesterday talking about what our options are. We have decided that before we start medication we are going to try a naturopath. I am really torn and feel like we are making the choice of the lesser of two evils...the first evil would be letting her continue having seizures and us, and the people around us, living on the edge constantly...never knowing when we will end up in the hospital, the other evil is the side effects of the medication they will give her.

Phenobarital is what she would take. Everyday, for a very long time. The side effects that bother me the most are: agressiveness, irritable behaviour, inattention, hyperactivity. The dr in the out of town hospital also told us that frequently, kids when they start the medication, lose some of their development but always get it back...

I just don't know if this is what we want to look forward to. I think that the side effects mimic ADHD, and I just don't want another lable coming out of this to deal with. It is also a very addictive medication...

I am looking at the possibility of trying to juice for her. Mostly the recipes are green juices, such as, kale, spinach, beet greens, celery etc...They seem easy enough to try them out...My research yesterday showed that a lot of seizures come from a mineral depletion.

One of the remedies for mineral depletion, magnesium in general, was epsom salts (magnesium) in a cup of orange juice (citric acid). Every morning, every night. I feel odd feeding my baby bath salts though...

If anyone has any other suggestions, I would love to hear about them...

Toddler Toilet Tales

(Thanks A, you know who you are, for the title idea:-)

So, we still haven't gotten that velcro fastener to keep the toilet lid down. We have been on a pretty strict budget and right now that is not in it...Maybe I can make something to do the job in the meantime...

Because...WE HAVE GOT TO DO SOMETHING ABOUT THIS PROBLEM!!!

After the toothpaste, it was the cookie...which she tried to retrieve, and I flushed as soon as the picture was taken...



Then it was the hairbrush and cuppy lid...she is just soooo proud of herself...

Now, to come up with some kind of homemade toilet lid stopper...maybe a BRICK!!! (but that wouldn't stop her either, I am sure of it!!)

Changing my template...

So, I have finally given in and upgraded a bunch of my computer stuff...I am now working with Explorer 8!! What a difference...and I even upated my blog. I have yet to figure out how to change my banner...I need something new there, that reflects our family (all 7 of us!). Anyhow, will figure that out another time...