breathing - in and out

I have been searching and reading a lot on topical steriod addiction as of late and the more I think about it the more I KNOW that this is Cruz. Here are my fears: Does this include his asthma puffers? What about Benadryl? What if anything can be given to him if he is having a crazy itch attack? If I start him on the withdrawl process all it takes is one time for my Mom to f*** it up.

I am so sick and tired of living in fear. Fear of every god damned thing. Will Cruz ever function optimally? Will his Dad ever not be an ass****, will my Mom ever be supportive, will I find a better job, should I quit this one, should I be at home with my son and not worry about money and live a more poor life, CAN someone/anyone give me the ANSWERS? Please?

So on top of reading about all this steroid addiction I am still in the process of getting Cruz to a) have baths and b) get his blood work done for allergy testing. He was prescribed ativan to ease him so he'd be less afraid of getting it done but nope it sure didn't help. Made him a lot loopy but still my little fighter was there. God I just admire the fight in him though. Those nurses were sure on their toes and very worried. We ended up leaving, but now what?

I have to thank facebook for the groups...the eczema group, and the food allergy friend group. I am thankful for all the people out there sharing experiences and being straight up and not holding back in their journey to having healthier non-ithcy kids.

Okay, so I need to breathe... and pick every Mom's brain who has or is going thru this because this smile could be brighter!

Foods

I am going to try and add food that we make in an effort to use products that Cruz is allergic to, which are as follows:

Dairy
Eggs
Nuts
Wheat
Soy
Barley

I also have an extremely picky eater!!!

out of love

I just want to post that I have a deep rooted connection with my son as of late and we have never felt more close and at peace with one another. My son is such an old soul, very in tune with his emotions and feelings. I have a sense of peace now with him - like never before. Thinking of him no longer stresses me out it makes me smile.

His eczema is still not good but we have come a far way from where we were, and I know it'll never be that bad again. Yes we are tired. But we have a better understanding of one another. Sounds totally corny, right? But not to me.

I am going to blog more!

My mind...neverending

Well it has been a long 4 months since my last archive. Things have been really good. We had a great Christmas this year, one I was sort of dreading. Last year Cruz's eczema was so horrible I dreaded the weather and the holiday. But we ended up having a fantastic Christmas shared with all our (small) family. I decided that in an effort to keep Cruz safe from allergens etc...that Christmas dinner would be held at our house. My one aunt has 2 pre-adolescent sons whom eat all of Cruz's allergens everywhere and he always has a flare up everytime we're there. From the table laiden in peanutbutter or the boys rooms in goose feathers, to duist mites, and dust, not to mention mold from the basement....So going there is out of the question most times just because of those things. My other Aunt has cats and a dog - so we stear clear!

We had the usual for dinner but made everything "Cruz safe" from mashed potatoes made with earth balance, and rice milk to gravy made with corn starch and deserts of apple pie, home-made Enjoy life chocolates....and my Mom made the best sweet potatoes that tasted like desert. It was amazing!

The eczema battle is still something we tackle daily. He still enjoys picking what he calls his "pickey spots" and as gross as it is eats it too. This really grosses me out but boys will be boys. I have him on a good vitamin regim of vitamin D, Omega 3, 6, and 9, Iron, and a multivitamin. I would still like to find a probitic and think I need to make an appointment with our naturopath.

The road is endless with Eczema but it does get better and easier to handle. Same with the food allergies. It's the anxiety that has to be dealt with.

From the Santa Clause Parade! My sweet babe!

The need for sleep

I am so tired today as I type this. I am at work and I think I maybe had 5 hours of sleep in total last night. I'm not sure if I'm right but I think my son's hydroxazine (adarax) is making him more restless and itch more. We get no sleep and it is so frustrating. This time of year for him is a nightmare with his skin. It may feel nice but it is so itchy for him. He scratches like crazy! Makes himself bleed. Refuses to bathe, keep clean and fights and screams when the mention of a bath comes up. He is terrified from last year and the wet-wrapping. Which was good - helped us sleep. He is tormented that the water stung his skin so bad.


We went to a new dermatologist last week and the guy gave us an oil to try that has nuts in it but assured me it is fine for ana kids and people in general. I have not used it because I am fearful plus Cruz heard him say it has nuts in it. Now he is terrified to try it. Why do doctors think kids can't or don't hear what they say. Some things are better off not said in front of a child...

No word from our medical yet either and it's been a long while...

Becoming a little impatient.

On a high note Cruz and I got our pictures done on the weekend and they turned out marvelous. Here is one of us from our shoot.

Hugs to all moms & dads with children with Eczema, Allergies, Food allergies and Anaphylaxis

the waiting game

It's been a few weeks now and the fast turn around has turned into a waiting game. Waiting on MSP (medical services plan) to approve or dis-approve our trip to Denver to go to National Jewish Health (NJH) I hope they make a decision soon. The waiting is making me crazy.

Not sure if any other parents with eczema stricken children find solice in swimming but we do. Last night Cruz and I went swimming and he had a great time as did I. It seems to dry the eczema and allow all dead or infected skin to heal. He is dry after but when you put his regular cream on his skin feels great. I think this is what we will do on a regular. He loves to swim as do I.

This is a breif update but update nonetheless.

All the best!

the road to Denver (fingers crossed)

For the past week now I have been on and off the phone with Nurses, the finance department and our liason for National Jewish Health (NJH) and it is crazy when it come to the different health care systems. The cost for NJH is approximately 20K which is so much more than I had imagined. It is a 10 day outpatient program but 20 grand - that's a whole lotta money. Obviously worth it for my son and any other child who suffers from severe eczema. Our nurse Sara, emailed me a 26 page package with all the information needed for our stay. The package is very detailed and through.

My first stop yesterday at my office was to call and find ot about the costs. I called Medical Service Plan (MSP) which is our care provider in Canada, and was passed all over the place. Then I called First Nations Health non-insured Health Benefits, only to be switched back to MSP where I found out I will need to get the refereing Doctor, our Allergist and Immunologist in Kelowna to send a letter to MSP. The letter must say that this care at NJH is needed for Cruz because there is no program of it's kind in Canada and Cruz is a prime candidate. So after getting off the phone with Dr. Appelt's office (Dr In Kelowna) I make sure she faxes them by the number MSP gave me for the Out Of Country Coordinator, who then will pass the letter on to the Ministry of Health which will be reviewed by a board, then back to out of country coordinator, then back to doctors office in Kelowna, and with either a Yes or No reply they will then contact me. The assured me it is a 7- 10 day turnaround. Ppppfeeeeewwwwwwwwww

Now the wait begins and that should give my family some time to fill out and get our passports in order.

Wish us luck we hear a YES in a little while. :)