Heading to School

Evan is off to preschool on Tuesday. It's a bittersweet moment and though I am very excited to have some me time, it's such a big change from what we have been doing the past 3 years. Preschool is only 3 hrs a day but our whole routine changes. A change I have needed for a long time. New routines are great, never mind the fact that it comes with some 'mommy time'. And Evan is absolutely ecstatic to go to school. He has a HUGE smile on his face when I say "the word".

Im not nervous to send him off. We had time at the end of the last school year to get Evan's school routines ironed out and skin care practice with the nurse and his aides. That "sending your child off for the first day of school moment" did not hit me then. Probably because I went to school with him the first week but also because I knew the year was ending and he'd be home for the summer. But it gave everyone time to get to know Evan, his skin, his needs and be comfortable with it.

Sending him off Tuesday will not be nerve wrecking for me as he is in GREAT hands at school. But I can feel that emotional side of me rising since I am sending off my baby for a WHOLE SCHOOL YEAR. It's hard to even believe he is already 3 years old never mind starting preschool. But to get to this comfort level that I am at, with sending him off, did come with a lot of planning and training. Since Evan was receiving therapy through the Birth to Three program he was referred to the public school system for services when he turned 3. We had quite a few meetings before our official PPT to prepare everyone with what to expect by having a student with the most severe case of Ichthyosis known, who was also very behind developmentally.

Here is a list of things I did in preparation to sending Evan to school, first and foremost was to educate everyone about Ichthyosis:


1. Provide as much information about Ichthyosis as possible: 

       -I made copies of the FIRST Foundation Harlequin Ichthyosis information page to be handed out to everyone (for our initial meeting).

       -I provided FIRST's Teacher & Staff Guide booklets to everyone who would be working with Evan. *Very important for substitutes* (you can have the FIRST Foundation send these to your school too)

       -I wrote a detailed list of "Medical Concerns" for Evan to be included in his file or available to anyone working with him. As Ichthyosis varies by type and may require different care for the same types, it is important to have a detailed list of medical care required to keep your child safe, healthy and comfortable.

       -I strongly suggested the FIRST Foundation website and contact information be used to gain more information about Ichthyosis as well as answering any questions or concerns they may have.

       -I offered to come in and "train" others on how to care for Evan, what signs to look for in regards to skin concerns, temperature or dehydration. I also provided a very detailed "care instruction" list on how to apply Aquaphor, how to care for a cut/fissure, overheating signs, cool down methods etc.

       -I offered to send a letter home with classmates explaining Evan's condition, so that everyone would be comfortable; parents, children and teachers. I also suggested this letter be available to all of the staff at the school, since this is where Evan will be until 6th grade. If the other teachers are prepared, they will be able to accurately respond if their students' have questions about Evan.

       -I provided my blog address so school personnel could gain more information about ichthyosis as well as getting to know Evan before he started school.


2. In the classroom:

       -I provided a container of items for the nurse and for the classroom so that Evan has everything he needs while in school. Items included: Aquaphor, bacitracin, baby wipes, diapers, hand sanitizer (for adults), clorox wipes (for cleaning), a change of clothing, spray bottle, lightweight blankets for carpet time and a thermometer for the classroom. (I even gave all his therapists, teacher and aides a "welcome gift" which included a bottle of Spray-n-Wash and personal hand sanitizer)

       -Evan's "emergency bag" is pretty much his diaper bag which has everything he could possible need. I check it each day and send it with him to school. It is always kept with him but also includes items necessary incase of an emergency. (i.e. a fire drill on a warm day would require a hat, sunglasses, spray bottle or ice pack)

       -I provided the classroom with a dust buster. Since skin is all over my house, I can imagine what it will do to a classroom over time. It's a nice and convenient item to help keep things clean around any kid, Ichthyosis or not.

       -I offered to come into school the first day to talk with the students about Evan. I figured the best way to make sure everyone was comfortable was to talk about it. Last year I went in and talked about Evan's skin with the class and answered questions. It was a great way to introduce Evan to the class as well as reminding them "it's ok to be different, everyone is different".

3. Be an advocate for your child:

        -Know your rights. There are certain laws set in place to protect your child's medical or education needs. Though federal laws, your school system should provide you with the proper information or where & how to obtain it. (504 PLAN)

       -Ichthyosis is rare. Most school systems have never heard of it before. Even if they read about it,  you know your child best. Be sure to be clear about their medical needs and PUT IT IN WRITING. You know what your child needs and what your child is or isn't capable of, in regards to skin.

       -Be clear on your views of bullying. Since Ichthyosis is a very physical thing, many have been scrutinized by their appearance. With everything these children go through they should not have to deal with these behaviors. Though all school systems have no tolerance for it, make it a point that you don't either.



More sites and links about sending you're child with Ichthyosis off to school:

FIRST Foundation:

How Do I Inform My Child's Teachers and Classmates About Ichthyosis? 

The College Survival Guide

Guide for Teacher's and School Personnel



Confetti Skin, Beauty Within:

Ichthyosis and 504 Planning

Life With Ichthyosis: Meet the Teacher

Back to School 2013

Evan testin' out his snazzy school jeans with his best bud by his side!

   

 

My First: FIRST Gathering

A few weekends ago, I was lucky enough to attend the Patient Support Forum hosted by the FIRST Foundation in Mahwah, NJ. Since Evan just had surgery he stayed home with his dad. I made the short trip solo and I am SO HAPPY that I did.

Not only did I get an excellent genetics lesson but I also got to meet some wonderful families. Some, I recognized from FIRST newsletters or on FIRST's member stories page and some new faces I had never seen before. It's was small and intimate and very rewarding. It was comforting to be with a community who "gets it" and has "been in your shoes". It was interesting to meet others with different types of Ichthyosis and to communicate with parents about how they care for their child. In the "parents group" we also talked about social interactions and school settings.

As much as I "knew" about Evan's genetics, learning more about genetics in general, types of mutations and why/how mutations cause problems within genes was a great reminder of those forgotten science lessons in high school. It was interesting to hear about the latest research and treatments out there. Dr. Choate's Gene Discovery Project is beneficial to the understanding of Ichthyosis and how mutations affect a cell. Having a registry of those with Ichthyosis is beneficial for further research for treatments and a cure.

So what did I learn? Lots. Genetic alone was a great lesson. I wouldn't mind another one! A few facts and tips I took from this conference were:

-If you know Ichthyosis runs in your family, it can be tested for through non-invasive prenatal blood work! Way better than an amniocentesis! This is an amazing advance!

-Baking soda baths help with desquamation (shedding of skin). Well for one- I learned what "desquamation" means and two- I learned why we do baking soda baths! We have always done them and I thought it was just to help soften the water for "soft" skin. But helping the shedding process is the biggest benefactor.

-The NIH research funding has been cut by 15%. This would include loosing LOTS of scientists who are looking for better treatments and cures in all types medical research. You can contact your local representative and share your story to help prevent budget cuts.

-FIRST is organizing ways for teens to keep in contact by facilitating programs dedicated to their age group by connecting them in person and via Internet.

-Install a water softener. We have well water and it has a lot of minerals and is very hard. These systems were recommended by other parents who say it has been a big help aiding their child's skin, never mind  your own.

Being a part of this community excited me for Evan's future. I felt so comfortable being with others who understand what it was like to be 'in my shoes'. The information available was impressive and necessary. To know Evan will be in his 'own element' while spening time with others affected is such a beneficial and comforting experience. I know Evan will be just as delighted to spend time with others during FIRST gatherings for years to come. 

Read more about the patient support forum at Mahwah, NJ here:

FIRST Blog- Live From Mahwah and More from Mahwah

Confetti Skin, Beauty Within- Jennifer's Lesson in Basic Genetics


 

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.