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. :)

The road to recovery

This has been a really great Summer. A lot of very great visits from dear friends, a little travel and a lot of time spent by the pool. Cruz absolutely loves to swim. We spend endless hours in the pool this summer. Sad now that the outdoor ones are closed for the season - but we'll have to head up to TCC now for swimming.

Cruz is still terrified to bathe so the pool eases his stresses over water and allows us to relax in what he thinks is a good time and releives me as a big bath. I rinse him clean of pool water after we get out.

A few weeks ago we went to see his Immunologist and Allergist in Kelowna and sat there and went over everything you always have to. The doctor has now referedus to National Jewish Health in Denver, Colorado. http://www.nationaljewish.org/healthinfo/ they have an entire eczema program for kids. I know a few Mom's from the groups over facebook that have been there and they marvel over the hospital and the staff. I am happy but also very anxioius.

This is a big trip to go on with a food allergic child, one with life threatening allergies. And also with my very chronicly ill Mother - who is lovely but very, very neurotic. I sometimes wonder who i'll want to kill first my son or my Mom...jokes but I'm sure some of you know how family can be and well That's My Mom!

The Hospital called yesterday to do a health history of Cruz and it's crazy to go back over all this little babe of mine has been through. I always want to know reasons and truths and to me there is no reason why a little boy has to endure this. Any kids for that matter. In a world of disease and everything else it's insane to look outside of my box because this is something we deal with daily and all I can ever wish for is a cure. A cure for eczema, food allergies and asthma. But firstly eczema.

I am bad for updating my blog but I'm going to try more often!

As of now there is no set appointment but I have to wait for passport stuff and to find out if our medical is covered down in the States for his visit.

Here is a fun pic of Cruz swimming....

Cruz's skin has gone from soft supple to dry and flaky once again. I am changing his clothes about 5times a day, bathing him when I can, cleaning and keeping his nails very short. Kamloops (where we live) has just got a new dermatologist and we don't have an appointment until late July. My fear is school and Kindergarten....

I want Cruz to thrive in a normal school environment and have already called some schools in the district. Some seem hopeful and others very bleek. Right now re-viewing daycares is so hard...they say they'll put cream on him but they too are so busy and I appreciate and acknowledge that they are amazing people who take care of our children. I just want to feel like he is so super safe and they will look at his skin and know it is dry and administer the cream. I wish there was a magic wand and someone could a)either take away his eczema or b)give me all the answers.

I love my son so much, he lights up my life! I am blessed

I have been having HUGE technical difficulties with this bog for a few months now - not sure why? It is finally getting warmer in Kamloops and I think summer is finally here. I always look forward to summer for the lush trees, BBQ's, laughter, and swimming pool fun, as well as the long nights and cool breezes. It also gives me hope that Cruz's skin will be good. The water from chlorine tends to dry it a little and the sun seems to help too. He get's to be the most beautiful color when tanned. With his mix of African and First Nations.

We have just ome off a 15 day cycle of prednisone that has completely cleared up his whole body as well as any infections and scabbing he had. He also underwent surgery in May for a circumcision. Routinely this went well however a few weeks after the surgery Cruz would scream to urinate. I took him to the doctor and it was nothing, so she advised to keep puting polysporin around the circumcized area. Now all is good!

This is a good time and I will update more as the days go by with Summer and his allergies, eczema, asthma and circumcision....

test

Happy days...con't

If I sound like a total bummer today it's probably because I feel a little bummed out. Cruz is getting a little itchier as the days go on. I posted the Adele song because I feel like I'm rolling in the deep. My brain is FULL of ideas as to what happens to my son in his body and what makes him scratch his gorgeous body till it bleeds. It is so frustrating. I know as a parent you are supposed to look at pictures admiring your beautiful child...but when I look at pictures I remember when his skin was either good or bad. Seem awful hey? I feel awful. When I look at past photos I see when he was super happy, thriving, and enjoying being in a certain place or outing and blame it on his eczema. To me eczema is a frigging nightmare that controls our life! I hate it and I feel so badly for my son.

I got a call yesterday from BC Children's hospital and the day for Cruz's surgery has come. He needs to be circumcised because he has undesirable foreskin. And when it doesn't retract and having eczema head to toe you also get it on your penis. So with his undesirable foreskin and eczema he has had a few infections and needs the surgery. I know it needs to be done but with everything this child of mine endures what the eff else? I feel so badly. I really hope it all goes well and he won't be upset or blame me for it. He often asks me why I take him to different doctors, why I put cream on him, why he has to bathe...etc... He lives in his jammies because they are cool and now he wants to wear them everywhere because of it.

When will we get a little peace?

Happy days?

As the days roll on

I haven't posted in a while only because I simply cannot find the time. Life is super busy. Cruz's skin is more mending daily. He still hates bathing, fights me tooth and nail not to have one because of the fear he has over them when it used to burn his skin. I hope he gets over this fear. He is rising in terms of his fears as well. He nhow tells me and whoever to wash their hands when they are going to touch him. He freaks out over bugs. And doesn't want to go outside because that's where the bugs are. I understand I am somewhat to blame due to my fear of bee's. This only stems from being a child stung and alone. We are no longer in daycare because we got terminated...my lack of communication with them. Which is a blessing in disguise to be honest. He did the "happy" dance when we found out and is still happy that he doesn't have to go back. Some anxiety issues I know!

Still doing the homeopathy drops and vega testing, and he is doing great! Still itchy and a little boy about to turn 4 and I am hopeful for the best!

Damn you

I could kick my computer right now. Just finished a postwas tuning it up and BOOM it was gone. Damn thing! I am finding the ever evolving world of technology hard to keep up with. Even now trying to imbed codes for links and such. I wonder if there are seminars for those who wish to just stay a bit afloat. I wish to share today a video from YouTube. It is a video done by the Food Allergy Initiative. The vidoe is from parent's perspectives and the first time I watched it I cried. It was truly amazing and it still rings so true to me and how I feel and what parents with children with food allergies go thru on a day-to-day basis.

Finding grace...

I used to look at life as kind of easy-breesy and didn't have many cares. I now have wayyyyyyyy too many cares. I care all too much to be honest. Why?

I don't have all the answers, all I have is hope and solutions. No I am not a professional - I am a Mother. A mother who would do anything for her son. I have never loved, pained, cried, and yearned to be a better person ever before in my life. But being a Mom changes everything. To find some peace in my semi crazy life I have sought help, am speaking to someone about my problems and in turn have found other things that I am hopeful for. I started a list of things I would like to do short term and then a longer list of things I want to do more bucket list-ish. It reminds me of the things that really make life worth the journey. The journey that I sometimes feel I have no control over BUT am once regaining. I am in charge of my life and for the life of my son. I will continue to advocate, fight, cry and learn for the both of us.

Today is Friday - a day I look forward to most of the week. It is the weekend and I get to spend it all with my boy! I think this weekend we'll go sledding and make homemade soup.

Cruz's skin is on the mend and I have the daycare now puting the evening primrose oil on. They had pasta day there today so I am excited to hear if he ate his rice pasta with red sauce, all of which I provided the daycare with. On top of Cruz's food allergies he is also the pickiest eater! It kind of makes me chuckle because all my life I've not liked mushrooms and now I have this wee one who won't even eat a single vegetable. lol.

Have a great weekend! Esme.

Sleep

People always used to say "enjoy your sleep while you can" well that has taken on new meaning to me and wow do I ever miss sleeping. It has been the most awful, sleep-deprived, stressful past few months of my life. My son as mentioned suffers from eczema, and I mean I used to see people with eczema had some girlfriends with it when I was a kid. BUT it was never what I had ever expected to see on the person that too me, is the most amazing, beautiful, blessing, smart, witty, charming, perfect son I gave birth to. It didn't just happen overnight either. It has progressed into this horrible monster that consumes our life and makes my son scratch his skin until it bleeds and he cries because he simply cannot soothe it. I'm not sure what the trigger was this time (I always seem to think there should be an answer for everything) but to date this has been the worst break out. I have Cruz on total food avoidance of all things he has tested positive to via rast testing and blood tested too. I wash his clothing in dye, perfume, chlorine free detergent and when his skin is super bad I wash it in just hot water and do a second rinse cycle on all his clothing. Everything he wears is cotton, 100%. I don't let him wear anything but. I vaccuum the house like a loon, change the sheets on our bed (he sleeps with me) every second or third day. I wash the floors with vinegar or sometimes bleach. I try and keep everything as natural as possible use baking soda. I use all natural beauty products. I find that Cruz even get's itchy from other people being over. Some are in touch with animals I am sure but I vaccuum after people come over too. It is really nice when someone just get's it. They come over in clean clothes and have made the extra effort to be clean as they know the state of Cruz and how easy he can have a flare up.

I was introduced to wet-wraps by a mother of a little boy with severe eczema who was a patient at National Jewish Health http://www.nationaljewish.org/programs/pediatric/atopic-dermatitis.aspx
this is the link to their eczema program. These wraps HELP, but thing is my son doesn't like me doing them all the time. I should be greatful he's bathing again. It is a struggle to get him into the tub and prior to now he would scream to get into the bathtub as the open wounds from his scrathing would burn and sting when he got into even the most tepid of baths. So we are bathing every two days just to get the dead skin off and to clean his body off from day-to-day stuff he encounters at daycare etc. I need to start wet-wrapping him again on the off days because we simply are not sleeping. Last night alone we were up four times. Twice I lubed him up, one other time I gave him what the doctors say will stop the scratching hydroxazine and the other time I had to rub his itchy skin till he fell back asleep. We snuggle most of the night which for me is crazy because I get neck and back spasms and kinks that alter my range of motion for days and weeks to come. I do get periods of sleep uninterrupted but I worry too about my son and his sleep. He is hard to wake in the morning and always sleeps at nap time at daycare. Then we go home and he is tired and isn't up for too much play. It worries me, as does everything that has to do with him.

He seems to be on the mend but he is extremely red everytime I pick him up from daycare, and when he wakes up in the morning. Not sure why...

I need to go buy more primrose oil for his skin as well as internally for him.

Epiphany

I have recently had a few or a lot of realizations which too, are an epiphany. One being that I have researched and scoured the internet for years about my son's allergies, eczema, and asthma for years to always turn up empty. Until a recent visit to Cruz's allergist where I seen one of my Obstetrician's from our home town. We travel 2 hours to see his allergist in Kelowna. There we met his family and his ever so knowledgable wife who is a Director with Anaphylaxis Canada. Their daughter now a teenager has suffered from allergies her whole life and was in the office doing a few challenges and of a few she had passed. They sat there and watched as my son clawed at his skin with his ever worsening eczema and remembered when their daughter had it as well. They were a wealth of information. And from then I have been making it my personal battle to find answers, solutions and overall peace with something he has that may go away but that may never go away.

The 3 I mention don't come with a label and tell you how to deal with them, it is more trial and error and we are still learning. I didn't know http://www.anaphylaxis.org/ existed before meeting the family in the allergists office. I didn't hear of the magazine publication http://www.allergicliving.com/. More importantly I had no idea I WASN'T ALONE.

I have always had a heavy heart BUT nothing had ever prepared me for what I had to deal with and how I was going to deal with my son's allergies, eczema and asthma. So I am going to talk about it here, and hopefully I can be of help to someone. I have a lot to share and have the tendancy to ramble and I know these blogs are somewhat neat, punctuated, and serious. Well this is serious, however I am not perfect...so there will be typo's and maybe a few foul words too. Love me or hate me - I don't mind.