News and Updates

Ichthyosis Awareness Month (IAM) starts in ONE WEEK!!! And what a better way to begin, than to send off a nice check to the FIRST Foundation from Evan's FIRST Fundraiser. I do not have an exact total yet but we will definitely be giving FIRST over $1000!!

Thank you, thank you, thank you to everyone who participated and donated. Not only are your generous donations helping this amazing foundation but you also got a great shirt out of it!! I appreciate everyone's support and dedication to help raise awareness for Ichthyosis and for FIRST. Please do not forget to send me a picture while sporting your T-Shirt!!!

I plan on participating in the "It Makes Cents to Help FIRST" coin collection fundraiser during the month of May. I know this will be my second fundraiser back to back but at least the goal of this one is to raise awareness. I plan on making jars and distributing them around the community. If you would like to help collect change and raise awareness for Ichthyosis and FIRST please let me know. You can even put a jar in your house to collect a few dollars over the month! Whether it's two dollars or 10 dollars, it's better than nothing and adds up quick! Email me at dede583@hotmail.com or leave a comment if your are interested. I can send out labels for jars and brochures & cards (with information about Ichthyosis provided by the FIRST Foundation) as soon as possible.

Here are what the labels looked like last year. This year I will have an updated version with a current picture. I would like to start sending out labels as soon as possible so please contact me!

It Makes Cents to Help FIRST 2012

Be Sure to check my UPDATED page: Fundraising Events for FIRST to read about other fundraisers and events going on during Ichthyosis Awareness Month 2013.

 

We Love Boston

I want to send my sincere condolences to all who were affected by the tragedy which occurred at the Boston Marathon. Boston is a city I hold close to my heart. I consider it "my city" as it is my favorite to visit on the east coast and a city I know the best. I went to college right outside of Boston. My eldest brother went to Boston University, another brother worked and lived in Boston for a while and my sister currently lives in the Boston area. I have always been a Red Sox fan, well at least since 1993 when my brother started at BU.

Every time I visit my sister we go into Boston. And ironically enough we are usually in the Back Bay area. An area that is important to my sister. An area where she crossed that finish line four times. An area where she got married. My sister's wedding was in the Boston Public Library which is right next to the finish line. Her photographer stopped traffic so he could take pictures of her running across the finish; in her gown with her new husband (and even the Boston Globe came to snap a few pics for their paper and online). I have been to Boston too many times to count and have been in that 'area' for the majority of my visits.

Patriot's Day aka Marathon Monday is a day I have celebrated many times. In college it was an extra day off from classes, which involved a few beverages while cheering on runners who ran past our campus (Rt 16 and Commonwealth). Now it is a day where I cheer on my sister, a marathon runner, as she completes yet another feat. This year was my sister's 4th time running the Boston Marathon. I was extremely excited and proud of her as she is an amazing athlete and has been one of Evan's biggest cheerleaders. Of course I had to return the favor and send her this picture right before she started the race.

Evan and his buddy who came to visit 

She is also affected by Harlequin Ichthyosis

I tracked my sister's progress throughout the day. I downloaded the Boston Marathon App onto my phone to stay connected. I even "rudely" kept checking my phone during a therapy session as I knew she was getting close to the finish. This amazing athlete finished the race with a time of 3:22:28 her new personal record. I was so proud of her and received a text message from her at 2:00 saying how she thought about Evan's picture throughout the entire race.

She was very lucky that day. Being only 3 blocks from the bombings at the time they occurred and experiencing that dramatic situation, she and her husband are Ok. You can imagine the frantic phone calls to her after hearing the news. Luckily text messaging worked and we received her text about 30 minutes after the bombings occurred. It is an incredibly unfortunate event to occur on such a joyous day filled with endless victories and accomplishments for so many. I have been at the finish line to cheer my sister on before. The last time I was at the finish cheering her on was when I was pregnant with Evan. I would have been there this year if we didn't have some visitors come from out of town. It is so mind blowing to think about that. I would never bring Evan to the finish line as I have experienced the crazy crowds and intensity of the city during a Marathon but he probably would have been in the Boston area with a friend.

I LOVE this city. It's a city I look forward to going to as long as I don't have to drive in it! A city my sister got married in, works in and lives near. Boston is strong. Im sure many of you know that already. Thinking about the good that did come from this tragic event; like runners continuing after the finish to donate blood, strangers helping one another offering a place to stay and food to eat and the amazing response from the police, marathon officials, and medical personnel really does show how strong this city is. We love you Boston. Always and forever 'Boston Strong'.

Marathon Monday 2010

My sister got engaged right after she finished the marathon.

 This is at her celebratory dinner.

Lynn's Marathon gear 2011

Raising awareness for FIRST

My favorite family photo

My sister's wedding at the Boston Public Library 2011

****One more thing I would like to say is THANK YOU to Robyn, creator of Tiny Superheroes, who sent capes to the children hospitalized after the Marathon bombings. All these capes were donated by Zaarly, the site where you can purchase/donate a cape yourself. Evan was featured as a Tiny Superhero in February this year. Robyn, you are a gracious soul putting smiles on the faces of many Tiny Superheroes!! THANK YOU!!****


 

A Day in Our Life: One Year Later

Evan has made some great progress in the past year. Even though I wish he was walking and talking, it is such a relief that we have a way to communicate with each other. I notice big differences in Evan's strength between the two movies. He has more control of his trunk & head and can sit & stand independently (except for balance). He is eating solid foods & snacks, drinking Pedisure rather than formula and has achieved some amazing receptive & cognitive skills. As much as the last year's movie was "something to do" and "something to post about" I am so glad I made it. Now I can see how far Evan has come. I can reminisce of what he was like then and feel proud about where he is now. The only thing that did not change over the year, or throughout his entire life, is his skin care.

My job seems even more demanding these days. Rather than a needy infant that needed multiple bottles and changes involving many sleepless nights; is a toddler who isn't mobile (which is obviously frustrating for him) and wants to be entertained 100% of the time. So much to the point where I am the only one who can entertain him while at home. He is certainly a Mama's boy but you'd think after spending endless hours with me he would want to hang out with his Dad.  But No. He cries whenever he is not around me. Joe can't play with him, change him, bathe him without Evan getting very upset while reaching and wailing "Mama Mama!". As much as this is a HUGE milestone for him to reach out and call my name, it can get exhausting after spending the previous 12 hours with him. Hopefully this 2 year old behavior will be out grown by the time he is three.

Our days and weeks are full of therapy sessions, gross/fine motor exercises, developmental activities and doctor appointments. They are filled with skin care management and constant battles to eat & drink fluids. They are filled with repetitive cleaning, sanitizing and washing.  They are filled with hope for the future and a worry that never quite goes away. Most parents are potty training their child at Evan's age. They go to playgrounds & parks and walk around and play. They devour their birthday cake and open presents with ease. We will get there one day. Maybe not this year or next but eventually it will be "A Day in Our Life".

Check out the post BELOW for last year's movie

 

A Day in Our Life: One Year Ago

Last year on April 9th, 2012 I recorded some video clips of what Evan and I do in a day. It happened to be a day when we did not have therapy and I even got the afternoon off! So it was not the 'typical' day that we experience but it does give you an idea of the work involved for his care. The original post can be found HERE.

Today, I am again, recording some video clips of what we do in a day. We actually have an ENT appointment which is a great example of the time and preparation involved for doctor visits. Luckily we are going to an office that is 15 minutes closer than Yale but is still over an hours drive. I am looking foward to comparing the videos to see how much Evan has improved over the year. Just thinking about our daily activities now compared to last year are a vast improvement.

Hopefully I can bust out some editing and have a video ready for tomorrow but it depends on Evan. Until then enjoy the video of last year's "A Day in Our Life". 

A Day in Our Life 2012

 

Boo to Infections

Evan had some suspicious "pustules" on his face that were making me very nervous. When treated with bacitracin they seemed to go away but would appear everyday, even after bleach baths! I kept pestering his Derm for advice and even had cultures taken by his Pediatrician. The first cultures did come back positive but we were only advised to use bactroban cream to treat it. I became increasingly concerned as the pustules started showing up in clusters of a dozen or more. I was quick to snap a pic and send it to his Derm to be safe.

Unfortunately it was a Friday afternoon before the holiday weekend so I wasn't expecting to see or hear from him until the following Monday. We got a call from a concerned Dermatologist that evening, offering to meet us at his closed office first thing Saturday morning. Infections are something you cannot take lightly as they can be VERY dangerous for kids like Evan. Luckily by the time the appointment came, Evan's skin looked better. But he still had some pustules lingering. Cultures were taken from his eye and skin which again came back positive for two different types of bacteria. Since bactroban should have "taken care" of the problem he came to the conclusion that his eyes were harboring the bacteria which he was rubbing onto his face.

Now, on day 5 of an antibiotic eye ointment, I have seen less to no pustules on his face. We will continue this ointment for another 5 days. I am relieved that it has cleared up especially since I was told that the two types of bactieria found would require two different oral antibiotics (if the ointment was unsuccessful). So yet again we have lucked out and dodged that bullet. Thank the Lord!

This situation is a wake up call for me and a reminder to stay as clean as possible. We don't know where he got the bacteria from though staph is everywhere. It could have been anything; the dog, the cat, a stuffed animal, a toy, the car seat, his cheese puff hand or not properly washing up. I am a bit upset as I try to be as clean as I can and make sure he only gets fresh stuffed animals and blankets. I guess I need to be more adamant about washing/wiping down ALL of the toys he touches immediately afterwards. But with his condition infections are pretty much inevitable. I am just grateful that we caught it before it got worse, hoping his skin stays clear for the next 5 days and then some. This little man sure has a way of keeping me on my toes!

Munching on a french fry as we wait for our perscription