Raising Awareness in Our Community

Evan and I participated in a news interview at our home in May. I have been hesitant to share my story with newspapers or news stations since I was concerned they would pitch our story in a dramatic way to gain viewers or readers. The great thing about blogging is that it is always my words and my point of view. I was approached by a news station in southern Connecticut through our Tiny Superheroes crew. Though incredibly nervous I accepted the offer to help raise awareness for Evan and the FIRST Foundation.

In the beginning of May, a husband and wife team joined us in our home to see what a typical morning was like for Evan. We chit-chatted for a while before recording began and Evan was hamming it up from the start. It was a busy morning filled with a bath, breakfast, multiple Aquaphor applications, walker practice, music therapy, play time and then an interview while keeping Evan happy and distracted. Joe unfortunately could not participate as work obligations, again, became a priority. The morning flew by and hours later their taping was wrapped up as Evan got ready for a nap.

I was anxious to see our story. I wanted to see what clips were included and what parts of our interview were shown. I was very happy after seeing the final product and impressed with the quality and professional nature of the clip. I was pleased that everything was positive, though it was hard for it not to be positive since that is how I view our life with Evan. I know only so much can fit into a short video clip but we did discuss Tiny Superheroes and the FIRST Foundation during our interview as well.

By no means do I expect to gain viewers or popularity by participating in this news interview. I would never think of Evan as "famous" since his disorder shouldn't be something that would ever make him "famous".  I had one mission and one mission only, to raise awareness for Ichthyosis. I am glad the interview was focussed on Evan and Evan only. I am glad they did not link my blog or even mention I had one. I know that this blog is a great resource of information to raise awareness and support FIRST but if people are really interested in learning more they could research their time into it or go to FIRST's website which was included in the news clip.

Evan's Story from Matthew Cyr on Vimeo.

Enjoy on News 12 Connecticut's site:
http://connecticut.news12.com/news/goshen-toddler-living-with-rare-genetic-skin-condition-harlequin-ichthyosis-1.5900009



 

Smarty Pants

I LOVE these two videos! Showing off some Evan smarts! These videos represent skills that might be considered "the basics" for most kids but are HUGE milestones for this little guy! He may not be walking or 'talking' like most 3 year olds but he sure is brilliant! (and I apologize that the quality of these videos are poor. I have to convert the files when I use the Sony for iMovie..)

Evan knows his shapes!

And loves to read! Moo Baa La La La is his favorite!

 

THREE Years Post NICU

Wow! My baby came home 3 years ago today! As much as his birthday is a celebration of his life and the milestones he made since birth, it was a VERY intense day and birth experience. I can't help but want to celebrate the HAPPY day when he finally came home to his mommy and daddy... for good! Last year I wrote a post, Two years Post NICU. And here we are again another year later with much to celebrate!

Mommy and Evan 

First day home 8-7-10

Mommy and Evan
Cunningham Tower 8-7-13

Before I go further, I have to update you all on Evan's surgery. Let me tell you how absolutely amazing this kid is! He was in good spirits all morning until the moment he was taken in. While chatting with the Anesthesiologist, Evan was goofy and silly and kept desperately leaning forward to give me kisses, again and again. They allowed me to go back with him until he was under. He didn't cry nor put up a fight with the mask. All the procedures went well. Evan was a sleepy head, napping for over 2 hrs after his initial wake up and slight fuss. The only time he cried was when they took out the IV but recovered very quickly. Maybe the power from his Tiny Superhero cape helped comfort him!

Happy, silly and sitting like a big boy! All ready to go into surgery on 7-31-13

I jumped in his bed and we got to snuggle when he first woke up

Then he took a long snooze before waking up again!

Evan was still in the NICU 3 years ago from his surgery date

With Daddy on 7-31-10

Evan is an amazing little boy. Nowadays he is on the "go" or at least tries to be. He has a mind of a toddler and the mobile abilities of a 6 month old which is frustrating for him and exhausting for me. He loves to be on his feet, which is fantastic, but when he gets tired he wont stop and will not walk efficiently or effectively (and expects me to "do it" for him). I can't imagine how frustrating it is for him to want to move around so bad and struggle to do so. I can see his frustration when he tries to communicate when he wants or needs something and I can't figure out what he is trying to say (though I'm usually pretty good! ;-)). He is fussier now than he has ever been before but I seriously can't complain. It's not all the time but during those specific toddler moments. Like when he freaks out when he doesn't get exactly what he wants or when he is super attached to Mommy and Mommy only. Bedtime is a struggle these days and he throws a fit every time I try to put him into his crib. (But during sleepovers with the grandparents, he falls asleep the minute he gets in the crib with NO FUSSING!) These are all normal behaviors and I am still grateful to experience them, the good, the bad and the ugly!

So now we are moving into the fourth year that I have been home with Evan.  Caring for him everyday. Participating with countless therapies and doctor appointments. Countless baths, aquaphor applications, diapers and feedings. I am so grateful I have been able to stay home with him but now I'
m ready for a break!! Preschool starts in September and boy am I counting the days. I am definitely looking forward to finally having some guaranteed "me" time in the morning. But it is comforting to know that Evan is in an amazing school system with amazing educators, therapists and aides. I feel completely comfortable with him in their care. Not only is school a benefit for this mom but Evan absolutely LOVES it. He is so engaged and happy while he is there and loves to be around other children. I will be soaking up this "me" time this fall but I can happily say that the future looks good to finally get back into teaching!

 "All good things, in all good time!"

 

Upcoming Surgery

Evan needs to have his ears cleaned out under anesthesia once a year. This deep clean will remove any skin debris attached to his ear drum which is much too sensitive to remove during office visits. He had this done last year and all went well. We are well over the year mark as we ran into some problems with the staff in charge of scheduling at Yale, for his May procedure (long story short- I called the night before to find out the time of surgery and they told me he was not scheduled for surgery, to later learn the doctor was waiting for us the next morning) As if there isn't enough anxiety consuming my body thinking about Evan "going under", this hiccup really boiled my blood.

We were well over the year mark for a cleaning, he missed a lot of therapy sessions for pre-op visits and I was mentally ready for him to go into surgery after stuffing his face all day long. Then to find out at 10pm the night before that it wasn't going to happen made me break down in tears. Honestly, I was quite surprised that Yale messed up as we have never run into any problems with this hospital before. Now we have to do it all over again. Pre-op visits and missing the last two days of his summer session and therapies at preschool.

My anxiety has risen as we added another procedure to the list. We want to avoid Evan from "going under" more than necessary in one year. As the ear cleaning is non invasive and a pretty "simple" procedure he is also having surgery done on the muscle of his eyes. This makes me a tad bit more nervous. The procedure will (hopefully) correct the Strabismus issue going on with Evan's eyes. The muscle in his eyes are weak, causing him to cross or turn in an eye more than it should go. This surgery is crucial to be done at early ages to avoid the loss of depth perception or binocular vision. Evan's dermatologist was completely on board with this as many of his patients have needed this surgery as well.

Notice his left eye is turned in more. 

It switches back and forth depending on the direction he looks. 

Of course the risks make me nervous never mind the fact he'll "be under" for a good 4 hours.  It's going to break my heart as he's taken away by the nurses to get the anesthesia. Most times they recommend you not to stay with your child as they go under since it not something you would want to witness. I asked to go with him the last time and they advised against it. But now that Evan is much more aware, once he leaves my arms I know he is going to freak out! This time I just may have to go with him!

Wednesday is the surgery so tomorrow I will be working really hard on filling him up! Ill keep you all updated with how it goes. Im sure he will be fine as this will be his 5th time under anesthesia but the new procedure has me more concerned. And hopefully it will correct the strabismus and he will benefit from it. I'm also very anxious for those ears to get a good cleaning as I strongly feel it could be the reason for his delays in speech. Sometimes, certain "words" or sounds  he makes sends me a red flag that he has a hearing impairment. So I am hoping he'll be busting out some new sounds (diagraphs are hard for him) and sentences when this is said and done!

This is what I have to do multiple times a week to keep the nooks and crannies of his ear clean...

 As well as going into the canal to scoop out skin. I can't imagine how much builds up deep after a year

 

Laundry Drama: Saving Your Washer

During Ichthyosis Awareness Month, I wrote a post on "Mommy tips". One of the topics was about laundry. Not only is it difficult to get Aquaphor out of clothes, it's also tricky to get it out of your washer. Especially front loaders. We received our front loader shortly after Evan was born thanks to our good friend Jenny. This machine has a "sanitize" cycle which does a really good job getting Aquaphor out of the clothing when using a basic detergent. But after a full year (and first year as an Ichthyosis mommy) of just throwing in laundry as is with minimal prepping, soaking or even shaking and no maintenance, the machine started clogging up.  I was getting errors, cycles that wouldn't finish and a machine that wouldn't drain. After having it serviced and given a few pointers, the machine was working better. I cleaned out the drain (pump filter) more often and occasionally used a washing machine cleaner to "clean" the machine. And again, a year later more errors and new errors.

You wouldn't believe the crud I have found in here. Lot's of Aqauphor and skin build in the pump filter.  **Make sure you have a dish to collect water, I use a cookie sheet to catch any liquid as you unscrew ***

As much as the machine was having problems because of Aquaphor and skin residue, I should have done a better job taking care of the machine, never mind the fact that it was one of my tips!!!!! Shaking his clothes out alone would have helped significantly (you wouldnt believe the amount of skin that comes off from shaking and I definitely had my lazy moments!) Running empty hot cycles would have been ideal after Evan's loads and cleaning the machine weekly would have prolonged its life.

We just had it serviced again and we were told we needed a new pump. I knew that the pump was just clogged not broken so I refused for pay hundreds for it to be fixed, most likely temporarily. I knew if I could clean out the machine really good, I could save it. After watching never ending youtube videos about taking front loaders apart, I knew I would not dare make that step. But I did get it working again after days and days of soaking in Washer Magic and then running empty Hot cycles with cleaners including bleach, vinegar, Tide, Borax, Krud Kutter, Spray-n-Wash,  and baking soda (NOT all at the same time!). But still, every time I tried to wash Evan's clothes it would not finish its cycle. A new washer for Evan was the consensus on this predicament; a top loader this time. With hopes to save the Kenmore for our clothing is the goal and so far a successful one!

The new setup! 

Just need to figure out the pluming connections so both machines are hooked up!

Some of the cleaners used..

The thing about laundry in this house is that we never really struggled to get Aqauphor out of the clothing. Spray-n-Wash did the trick for my clothes and the sanitize cycle on our Kenmore machine worked best for Evan's. But not taking care of the machine was causing it to not work properly and over time was not washing out Aquaphor as well. So after this ramble here is some NEW advice for laundry and saving your washer. Some of which I should have done in the beginning when it was suggested when Evan was a wee lad!

-Shake out clothing excessively! You can get some good exercise doing this!

-Soak heavily soiled Aquaphor clothing in HOT (dish soapy) water before washing in machine.

-Run empty HOT cycles on your machine after Aquaphor loads

-Clean out your machine weekly or biweekly (with a machine cleaner or even on the machine's cleaning cycle. BTW just saw the button on my Kenmore that it had a "clean machine cycle"- imagine that!)

-Try cleaning the machine with dish soap. (have yet to put this in a machine cycle but it is necessary for top loaders since residue also accumulates inside of the drum, imagine what you can't see!)

-Buy an extended warranty. Our new machine for Evan came with a 10yr motor warranty and optional 5 yr service plan. The plan cost the same as one service visit and it isn't a bad idea to have someone come out yearly to do that. FYI- they sometimes use a shop-vac to suck out things from the hoses or rubber drain area in front loaders and it seemed to help significantly!)

Shop-vac it!

-Check Craig's list for a cheap or affordable machine. Author's of Confetti Skin, Beauty Within wrote a post about laundry issues and they advised others to check Craig's list for a machine that you know is going to bite the dust once Aqauphor and skin take over!)

Washing your clothing is as important as washing out your machine. You can't have clean clothes if you don't have a clean machine. Since there are many extra expenses that are associated with Ichthyosis it is important to have a washer last as long as possible as it is an absolute necessity. Yes, unfortunately you use a lot more water and some non earth-friendly cleaners but it is essential for keeping you and your child healthy. Any other tips, feel free to share.

 

"It Makes Cents to Help FIRST" Final Tally..

May was Ichthyosis Awareness Month (IAM). A lot of activities, events, special blog posts and articles were shared by many in the Ichthyosis community to raise awareness for this life long condition. Carly, author of Tune into Radio Carly hosted guest posters each day of IAM (those stories can be found here and my post on her blog is here). Stephanie, author of LifeasUsdotcom, was the first woman with Harlequin Ichthyosis to give birth. Her healthy baby boy was born on May 25th. Mom, Dad and baby are all doing very well and you can keep up with them at LifeasUsdotcom. Courtney, Brenna's mom and author of Blessed by Brenna, wrote some great posts during IAM and even created a video to raise awareness and donations for FIRST (which can be found here).

Many events were hosted in honor of FIRST. You can read about all of these events on their site by CLICKING HERE. This year I decided to participate in the "It Makes Cents to Help FIRST" coin collection. I did not do as well (planning & promoting) as last year but still made a nice chunk of change totaling $378.55 *****UPDATED TO $588.55******!!! Thank you to everyone who helped collect change and donated!!!!

My father in-law, again, hosted a dress down day for the staff at his school and organized a student raffle. In addition to the fundraising events he hosted at school, he collcted donations at the Germania Club as well. All of the proceeds were to benefit FIRST which amounted to $1,100!! Amazing!!!

So far this year with my father in-law's fundraising efforts, my coin collection and my T-Shirt sale we have raised over $3,000!!! All thanks to my inspiring son, your kind donations and your efforts to help raise awareness!!!

Thank You!!!

 Evan thanks you too!!!!

 

Updates, Updates Updates!

Its been a while since I blogged because we have been busy busy bees over here!!! May was crazy, as I mentioned in my last post, filled with appointments, meetings, therapy sessions, a news interview, my 30th birthday and Ichthyosis Awareness Month activities. June was equally as busy with Evan's 3rd birthday, transition into preschool and a vacation to North Carolina.

Now that July is here I have some time to "relax" a bit. Relax is in quotes because what Ichthy Mommy really has time to relax? We have no big plans for July other than Evan's preschool summer session, which is only 3 days a week. We close out this month with a visit to the OR for Evan's ear cleaning and eye surgery... FINALLY!

So what has been going on over here? LOTS. June started off with a family photo shoot thanks to Simplicity by Carrie Photography. We had the photos taken on our property and even got a few shots in with Bruli and Nibby! Evan is not the most photogenic person especially when he is not in the "mood" to take pics but Carrie definitely got some good ones!

Simplicity by Carrie Photography

Simplicity by Carrie Photography

Simplicity by Carrie Photography

Evan's 3rd birthday party was celebrated the week after his birthday. He had a marvelous time hamming it up for all of his guests. He got a kick out of opening presents this year and even put a little bit of cake in his mouth! We have so many wonderful friends and family members who came to join the celebration. And this year I had a lot of help with food so I didn't have to go crazy making dishes. Thanks to everyone who helped out!!

Jungle theme!

Happy 3 year old!

Best gift ever!

CassieCakes!

Happy Day!

For Evan's second week of preschool, he rode the bus! We purchased a special chair for him to use and travel to and from school in. Since he is still unable to walk and sit independently this chair helps significantly for his safety while traveling around school. It lowers and raises to the desired height of the table he is sitting at and can be reclined or adjusted for his comfort while sitting. It is more appropriate for the school setting than the average stroller.

First time riding the bus!

We recently returned from our vacation to North Carolina! This year went very well though we were a bit bummed Joe could not join the family since he had work obligations. The temperatures were cooler than they were in the Northeast! (In the 25+ years we have been traveling down south I have never experienced cool summer temps like this!) There were a lot of overcast and breezy days which was perfect beach weather for this boy!  Never mind all the fun he had with his cousins, grandparents, aunts and uncles.

He loved being out in the sunshine!

And even wanted to go to the beach!

So we went!

 Sporting Evan's FIRST Shirts

  Evan wore tie-dye so he'd stand out :-p

The sun was bright and the wind took his hat!

Still lots to update about my Ichthyosis Awareness Month fundraising, how to transition into a school setting and details about Evan's upcoming OR procedures. I will be able to update more often now that we are in a "downtime" month!!