Evie-Man Live Action

I have to say that I am definitely not the best writer. English was my least favorite subject in school; I was more of a Math person. So I apologize for grammatical errors and/or lack of fluency in my posts. In any case, instead of reading a whole bunch today, I thought you might enjoy some random videos clips of Evan. These videos were taken in the past month and I obviously felt it was of some importance to record them at that time OR maybe I was a little bored.

Aside from using this blog as a way to raise awareness for Ichthyosis and the FIRST Foundation, I enjoy posting so family members and friends who live out of town and state can keep up with what's going on in Evan's life. And what better way to do that than to include some video footage. I have to say, and have said before, the iPhone has been a great way to capture some unexpected moments. And I definitely have my phone at hand 90% of the time. Enjoy the videos. I love watching them and I know I will be so excited to watch them when Evan is older.

Silly boy laughing at his Daddy

Bubble fun with Bruli

Playing with a few toys

Of course eating a cheese puff

Happy and whining 

P.s. Did anyone think of the "Turtle-man" or hear his call when reading my title???
The Hub loves that show and I can't get it out of my head!!!

Now and Then

Ever since Evan came home from the hospital, I have charted his progress. What once was meticulous details, written on homemade printed charts, about exact times and amounts of fluids/bottles Evan was taking, temperatures, sodium levels, weekly weights, and "notes", as I called it, has become charting daily fluid/bottle intake, solid food totals and bi-weekly (or so) weights, on the iPhone. I guess I have become a tad obsessed with charting these things but it has given my mind some ease to know the details and to know what fluids/solids may need to be taken the next day to "catch up". Charting his weight is obviously my most important entry. Weekly weights became stressful since I was not seeing major improvements, so now I only chart a few weights each month. Since I have all this juicy information, it has been encouraging to see the improvements he has made over the past two years. Here are a few of his gains based on information charted in the month(s) of August. (I chart metric so I converted it to US as well, metric is more precise :-))

Weight:

Now- August 2012
8.18 kg = 18lbs (finally)

Then- August 2010
2.57 kg = 5lbs 10oz

Last year- Aug 2011
6.06 kg = 13lbs 5oz

Clothing/diaper size:

Now 2012- Evan wears mostly 12 month clothing. Though 12 month onesies are a bit baggie on him, he needs the 12 month size for his leg and arm length but yet fits into size 2 shoes which fit the average 3-6 month old. He wears a size 3 diaper.

Then 2010- Evan was wearing Preemie sized clothing which was still big on him. He was wearing preemie sized diapers as well.

Last year- Evan was wearing 6 month clothing and occasionally 9 month pants. He transitioned from a size 1 to size 2 diaper last summer.

Diet:

Now 2012- Bottle fed 90% of nutrition: Pediasure peptide and whole milk mixture (34 calories per ounce) Consumes: from the bottle about 700-850 ml = 23-29oz total per day, 15ml-60ml = 1-4 tbsp of pureed food per day, and a handful of cheese puffs and/or yogurt chips, crackers or cookie. He drinks about 2-3 oz of water per day and we experiment with scrambled eggs, frozen purees, avocado, mushed up mac & cheese & super soft veggies or fruit. Ironically enough Evan does not like to touch things that are sticky.

Then 2010- Bottle fed 99% of nutrition: 70ml of breast milk mixed with 1 tsp of Neosure Similac formula (22 calories per ounce) Consumed: 375ml - 430ml = 12-14oz per day and 25-40 minutes of nursing per day.

Last year- Bottle fed 95% of nutirition: Similac Neosure formula (26 calories per ounce) Consumed: 700ml-750ml = 23-25oz total per day and 15ml-30ml = 1-2 tbsp of purees per day.



Milestones:

Now 2012- His communication skills have been blossoming like crazy. He is very aware of his surroundings and has been pointng and reaching a lot more to "get what he wants". His cognitive skills have been advancing rapidly. He has a studier trunk and holds his head, and shoulders at times, up nicely. He will bear some weight on his feet (20-30 seconds but I'll take it) and attempts to roll over if there is something he REALLY wants to get.

Then 2010- Graduated from the NICU. Started to move more on his own with a wider range of motion (turning head, moving arms up and down, wiggling fingers & straightening legs)

Last year- Finally stopped screaming when put on his belly. He started to lift up his head more when on his belly. We got a prone-stander to promote weight bearing which he enjoyed using. He started to babble more especially D's.

Likes:

Now 2012- Evan is a HUGE fan of cheese puffs and feeding himself. He has not mastered spoon feeding but would rather hold the spoon himself. He LOVES to cuddle with a stuffed animal and is a big fan of opening doors or lids of toys. He likes to turn the pages of a book, push buttons on a toy and pointing or reaching for what he wants. This little stinker is a typical boy and tries to touch himself at every opportunity he can. And he LOVES attention, his dog Bruli and kisses & hugs from his Mommy and Daddy.

Then 2010- Evan was still eating and sleeping on a pretty strict schedule like most newborns. He loved his naps, nursing and lounging in his bath without the scrubbing. He LOVED (and still loves) his pacifier and cuddling.

Last year- Evan loved to chew, bite or suck on any toy you gave him (especially if it was new). He was happy and content sitting in his rocker or bouncer. He started to babble and talk a lot more and enjoyed being in his newest piece of equipment at the time, his stander.



Dislikes:

Now 2012- This toddler is not a happy camper if I walk away from him for a second. He needs 100% attention (who can blame him?). He does not like it when I cut his nails or scrub his hands in the bath (screams bloody murder actually). He gets very whiney if he does not get what he wants (go outside, cheese puff, specific toy, etc.) And hates it when he is forced to do something he doesn't want to do, typical toddler behavior...

Then 2010- Evan hated tummy time, screamed when he was being scrubbed/exfoliated in the bath, screamed when getting a diaper change and during Aquaphor applications. He did not like to be put in a bouncer or chair and was not happy if his bottle cooled down.

Last year- Evan refused to bear weight on his feet, still fussed occasionally when on his belly and did not like to sleep in his crib (transition time from our room to his own).



Skin:

Now 2012- Evan's skin requires the same amount of work as it did when he came home two years ago. We have been vigorous with the "de-scaling" process and try to keep him as "scale free" as possible. As long as we work very hard and keep up with his skin maintenance, his skin is what I consider to be at his best, and obviously coated heavily with Aquaphor.

Then 2010- We were still trying to get a hang of scale removal and bath exfoliation. Evan's skin was very thick and we had to work very hard to remove the newer plauqes that developed due to no so great or "mastered" skin care techniques. We used a topical retinoid once a day until the thick plaques became manageable.

Last year- We had a pretty good routine, like now, for bathing and scale removal. After the installation of a new tub in our new home, MicroSilk, it has helped with scale removal and the up keep with his skin maintenance without as much vigorous and rough exfoliation.



The improvements Evan has made in the past 6 months have been tremendous. It gives my husband and I so much to look forward to in the upcoming year with the expectation of milestones he will achieve. He has come so far and has made huge gains from the age of 1 to 2 years old. I am only optimistic of the gains he will make by the time he turns 3. Though I have to say that in the past year he has received A LOT more therapy time (4 days/week rather than 1-2 days/week) which I believe has helped him make these great gains. Such an amazing little man we have.

Two Years Post NICU

Today marks the second anniversary of the day Evan came home from the NICU. I can still remember the excitement I felt and the achievement of the obstacles we overcame. Evan was on his way home. Of course, since I was told he would be discharged on August 7th, I had planned on being at the hospital bright and early. The 1 1/2 hour drive to Yale that day seemed like it took forvever. I remember how excited I was to bring Evan's car seat into the NICU knowing it wasn't for the 'car seat test' but for the real deal.. coming home.

Walking into the NICU was surreal thinking, 'Did we really just spend the last 58 days here?'.  It was weird to walk into Evan's room to see most of his things packed up. He was ready for one more meal, one final meal as a NICU baby. The nurse took off his probes from the monitors, which was a wake up call that he was really coming home. I sat down in the rocking chair to feed him and thought about everything we went through and how many times I dreamt of the day he would be discharged.

Last meal in the NICU

We lived an hour and a half north of Yale so my husband and I were a bit nervous for the drive. Putting Evan in his car seat was so exciting. He looked so itty-bitty leaving the hospital just shy of 5 pounds, over a pound gain from his birth weight. We said our goodbyes, which was not incredibly emotional since Evan's team was no longer on duty. We happily walked out of the hospital with our baby boy. The drive went surprisingly well. A little fuss here and there but of course Mommy was in the back seat to save the day.

On the way home

Pulling into the our driveway was the best feeling in the world. Then I remembered that we had a crazy, hyper, 1 year old chocolate lab. Fortunately, Bruli was very well behaved, calm and gentle around Evan. We enjoyed the day, alone, as new parents. Many family members and friends came to visit Evan when he was in the NICU so we decided to have a few days to be spoiled with some one-on-one Evan, Mommy & Daddy time.

Getting sleepy

Evan was eating every three hours on the button, since he was so use to his strict hospital schedule. We shared duties from feedings to diaper changes or Aquaphor applications. We did not have to worry about any oral medications since he had not been on any since he was two weeks old. It was such a wonderful feeling to be taking care of our baby at home.

Time for a snooze

Just like his eating schedule, his sleeping schedule was no different. I remember watching him sleep, feeling like I was dreaming that he was in his crib. He was a big fan of his soothie and enjoyed a snooze even through all the noise and sunshine that eventually poke through the window. When it was time for a bath that evening, we were well prepared. Evan soaked for a long time and never fussed. He was a very happy camper while taking his first bath at home.

Bath time

August 7th is a special day for us. It is a day that we can celebrate the homecoming of our baby who has survived one of the rarest skin disorders. It was the happiest day of my life and made me "forget" about the terrifying experience of his birth and his first few weeks on this Earth. Evan is truly a young warrior and I am looking forward to giving him the most amazing life a child could ever ask for. Lots of love, hugs & kisses, fun & laughter, comfort, guidance and security. He only deserves the best for all of the things he has to go through and will for life.

My sister's wedding & Evan's 1 year anniversary post NICU

So what is Evan doing these days?

Evan has mastered many milestones in the past two years for a child in his situation. Though he is still not sitting independently (but close to) or walking or crawling, he has been showing improvement in many areas. He has maintained a weight gain, though very small and at times only gaining an ounce or so a month. Now weighing 17lbs 10oz, Evan will bear weight on his feet for a few seconds and will do it longer and longer as we practice. His conginitive and receptive skills have been advancing rapidly these past few months. Evan is trying to communicate more by pointing and reaching but uses minimal signs. He LOVES attention and repetitive play like all toddlers and I am overjoyed when he giggles and laughs. 

Evan is still getting 90% of his nutrition from a bottle. He is no longer on powder formula but a mixture of prescripted PediaSure & whole milk. Evan is encouraged to eat pureed food but often refuses. I have always struggled to get Evan to consume his minimum amount of fluids per day and more than 1 oz of pureed food per day. Ironically enough he has developed an quite an interest in Gerber cheese puffs. He seemd to have skipped right over purees and has now been experimenting with and enojying soft dissolvable finger foods. Evan will hold his own sippy cup of ice cold water with and without handles. Evan has always been a difficult eater and it has been stressful worrying about his intake. I chart everything he eats and can tell you exactly what he ate a year or two ago today.

Evan's skin is still a lot of work to maintain. I can honestly say, recently, it has been hard to keep up with two, 45-60 min baths a day. Evan gets at least 2 baths every other day and his skin has seemed to be looking good. Im sure once the winter comes around it will not be possible to miss baths since it is hard to keep the humidity up. Recently, I have noticed that Evan closes his eyes when he sleeps more often. He still requires eye ointment in his eyes every night but occasionally he will have them completely closed for a few hours. Nail care is still tough. I feel like it is hard to keep up especially when they get thick and when Evan doesn't tolerate it. This is a new challenge for me, Evan becoming less tolerant in the bath. I knew it was inevitable. 

Overall we have been very lucky and very fortunate to have had it "easy" so far. We have stayed home since Evan was discharged (knock on wood) and have only been back for scheduled visits. Blood work which was originally weekly became monthly, to quarterly, and now every 6 months. ENT visits are still monthly and sometimes every other month depending on the success of the visit. Surgeries or sedations have been limited to a circumcision at 6 months old, an MRI and an OR visit, which will be yearly, for a thorough ear debridement. He has come so far. I am extremely proud of my young warrior.

Here is my silly boy....

A SPECIAL REQUEST:

A little girl named Brenna, who also has HI, can benefit from some prayers. She has been going through many obstacles since she has been born and is now facing another one. Please keep her in your thoughts as she jumps yet another hurdle at only 7 months old. If you have not already, you can read her story here: www.blessedbybrenna.blogspot.com We are thinking of you Brenna. You are quite the fighter and hope you return home as soon as possible.

Rockhill took "F.I.R.S.T." at the Sandy Beach Triathlon

Yesterday, my friend Tom Rockhill participated in the Sandy Beach Triathlon in Evan's honor. He has been dedicating his time to raise donations for the FIRST Foundation and has gotten very close to his goal of $1,000. On top of earning donations he was also able to raise awareness for Ichthyosis. Each athlete who competed received a flyer with Evan's picture and information about Harlequin Ichthyosis and the FIRST Foundation.

Tom did an amazing job and I am very impressed at how well he did competing. Evan and I were there to cheer him on and were able to "chat" for a few seconds as he jumped on his bike. This guy is a true triathlete. I was expecting him to take a break and rest a minute after his 1/2 mile swim but no, he jumped right on his bike and was on his way UP HILL.

wasting no time

Evan and I walked around while Tom was off on his 10 mile bike ride. It was quite warm for 6:30pm so I was spraying Evan non stop with water and placed an ice pack on his back while in his baby carrier, which helped cool me off too. We were approached the most by children who were curious about why his skin looked red. After I explained that he was born with a genetic skin disorder they had  confused looks on their faces. I went into more detail to explain and they asked questions. Interestingly enough not one child who approached us thought it was a sunburn. When one little girl asked, "If he has a brother or sister will they be born with it too?" caught me off guard. I briefly explained to her that when we were ready to have another baby, doctors would help us to be sure the baby would not have a skin disorder. 

Evan and I went back to the car to cool off (I was fortunate enough to park right by the finish line). We waited for Tom to come racing down the hill only to run back up it for his 3 miler. We got to cheer Tom on as he ran past us. Even Evan was clapping along.

no better way to start a run than up hill

We were not waiting long before we were cheering Rockhill on to the finish line. He finished at 1:33:12 and you better believe he had that ice cold Miller Lite waiting for him when he got there. I am very proud of Tom and am very touched that he wanted to compete for Evan. They officially got to meet for the very first time at the finish. Thanks Tom for all of your help to Evan and the FIRST Foundation. We really appreciate it.

On My Way "UP"

For about two weeks now, I have been in (what I refer to as) a 'funk'. After our vacation to the beach, the intensity of Evan's care and the obvious challenges he faces hit me like a ton of bricks. It wasn't the typical sadness I have felt before, where I would cry, 'get over it' and then continue on with my day. It was a sadness that wouldn't go away. No matter who I talked to or how many times I talked or thought about it, I was extremely emotional. My friend Courtney, another "Ichthy" Mom, mentioned that I may have, finally, hit my grieving period after being so strong for so long. I agree, since I had never felt this way before and had finally let the intensity of Evan's care take over my emotions. 

Not only have I been overwhelmed with Evan's care, but thinking about his future and the hurdles we face, was bringing me down. At the beach, it was obvious how many limits there were for Evan. We didn't get to have a real beach experience since the heat and sun kept us indoors most of the time. This made me realize how many things Evan will not get to do or as carefree as most do. It made me think about his future and how these limits are really for the safety of his life. Just to think about how worried or concerned I will be for Evan to play mini-golf someday makes me sad. He wont get to 'just go' and play but will have to with a cooling vest, lots of water, a hat, sunglasses, spray bottle, and will have sit in the shade and might not even be able to go if the temp is over 80 degrees. 

During the time I have been in this 'funk', I have become much more defensive and aggravated with strangers staring at my beautiful boy. While in a rest area on our way back from NC, I could not get over the stares, looks and dropped jaws as I walked past with Evan. Rather than ignoring them as I usually do, my emotions were building with anger and frustration. I still do not understand how some people could be so cruel and RUDE. I have NEVER been one to stare at someone who was 'different' and on the rare occasion that I may have, I would never be looking with a dropped jaw or have a disgusted look on my face. This is a challenge that I hope Evan does not have to worry about in his life but it unfortunately will occur at times.

I feel selfish for complaining when our challenges do not compare to others who may be living with a condition more severe or life threatening. So in a way I am still grateful for not having it the worst. I also feel guilty for even being sad or becoming emotional. I have always put on my happy face and have actually been very happy considering what is on my plate. But these last few weeks have been dragging for me. Fortunately I have been "On My Way UP". 

I recently inherited my grandmother's baby grand piano after the recent passing of my grandfather. My grandmother passed over 17 years ago and my aunt has been the owner of her piano since then. When I was told that my aunt was passing the piano on to me, I was thrilled especially since my middle name is my grandmother's name, Evalyn. My aunt was cleaning out the piano bench, which had not been done since my grandmother passed 17 years ago. Inside she found a newspaper article that my grandmother saved. It is obviously from the late 60's 70's based on the clothing being worn on the other side. The article is titled "Why Some Mothers Are Chosen by God"

The article found in my piano bench

circa 1970? 

"Why Some Mothers Are Chosen by God"

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.

"Forrest, Marjorie, daughter. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint...give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it.

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word." She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see....ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

I had to reread the article about 5 times since I was crying. This time it was not a sad cry but a happy one. I could not believe that my grandmother was sending me a sign and message which brought me clarity and optimism about being the mother of a special needs child. I was so amazed at the coincidence that my aunt, who had the piano for 17 years, had not gone through the piano bench until it was ready to be shipped to Connecticut. I feel so connected with my grandmother now. She always has a way of letting me know she is watching over and protecting my family. Just like when Evan was born and my grandfather's first response to hearing his name was "Evan for Evalyn". Which I didn't even realize when we named him.

This 'sign' has lifted my spirits and I'm on my way back "UP". I am glad to be over this spell which was thankfully broken by my grandmother's spirit. It's true that things happen for a reason. My husband and I were meant for each other and we were meant to be the loving and proud parents of our young warrior, Evan. Now the only place to go from here is "UP".

Rockhill's Triathlon Inspiration

A very good friend of ours, Tom Rockhill, has become quite the athlete these past few years. Rockhill has trained and participated in many road races and a few triathlons. Now he will be competing in the Sandy Beach Triathlon, in Evan's honor, here in CT next month. He is on a mission to earn donations which will be given to the FIRST Foundation in Evan's name.

I was so touched that Tom wanted to run in Evan's honor. It will be so wonderful to be standing at the finish line with Evan rooting him on. Not only are we very excited and proud of Rockhill for his dedication and willingness to help earn donations for FIRST, but it will also be the first time we have seen him in years. We all grew up together in CT but Tom has been living in Florida for years and we unfortunately have never made it down that far south. It will be quite the party once Tom gets back and we will not only reminisce of the 'olden' days but will create new memories and OF COURSE introduce him to our little warrior.

Rockhill has a blog to promote his Triathlon. Feel free to check it out. Rockhill's Triathlon Blog
It is hard for me not to giggle at some of his posts... I guess you need to know Rockhill to understand his humor.. or maybe not!!!!

The Tri-Athlete

Our First Family Vacation

We traveled to Ocean Isle Beach, North Carolina this past week for our annual vacation with my side of the family. This was the first time my husband and I went on a vacation together with Evan. The flight down to NC was very smooth other than the AC not working properly on the layover flight. At least we had time to get a bag of ice from the flight attendant before take off, since the spray bottle wasn’t doing a justice! Evan did well otherwise and we were so excited to arrive and start our vacation.

Giving the pool a try..

In the beginning of the week, we lucked out with some cooler and cloudy weather. This gave us the opportunity to do more things outside with Evan. We tried the pool first but he was not happy with the temperature of the water (even with all of the distractions from his cousins). Then we walked down to the beach to give the ocean experience a test drive. I think it was a little intense for Evan since the wind was whipping and the water had cooled down significantly. He was not the happiest camper when we stuck his feet in but at least we tried.

Unfortunately my husband had to head back home in the middle of the week for work. I was definitely bummed since he rarely gets a real vacation and now I would be taking care of Evan without him.  Luckily, we were able to go out to dinner alone before he left, which was a nice treat. My sister was watching Evan for the first time ‘alone’ and initially I was nervous but then actually was impressed at how well she did. (I have the tendency to tease her about her lack of babysitting experience)

The typical NC heat returned pretty much the day my husband left, so hanging out outside was limited. We managed to get outside here and there since all Evan did was reach for the door when we were stuck inside. But Evan was definitely entertained by his 6 cousins ranging from ages 1-12 years old. All he seemed to want to do was be around them and watch them play. Hopefully sooner than later he will be playing with them too.

Best time of day to be out with Ev

As the week wrapped up I was becoming exhausted with Evan’s out of sort routine. I had a ‘sad’ day the last day we were there especially since it was the hottest day of them all. It finally hit me how challenging life is going to be for Evan to do the simplest and most exciting things in life, a beach vacation. That day it was so sad for me to see all of my siblings and Evan’s cousins get to enjoy the beach so carefree. Once Evan is walking and talking, Im sure it will be ‘easier’. I was also hesitant to even bring him down to the beach (when the temp was right) after an uncomfortable encounter with some strangers a few days earlier.

I was offered a lot of help, from family members, to take care of Evan but didn’t take much of it. I was too nervous to let anyone else bring him outside and be the judge of his temperature. I got a few hours here and there to get down to the beach and jump in the pool. It was definitely a different experience being on vacation with my child. Never mind a child who is 2 and still cannot walk, talk, sit or eat well. I think if I had my husband with me for the entire week I would not have felt so overwhelmed.

Having fun with Uncle Matty's drumsticks

Hopefully next year Evan will be begging me to go to the pool and go down to the beach. I can’t wait to hear his little voice ask me questions and have a conversation with me. A lot of what I took from this vacation is that I hope others do not take their life for granted and appreciate how ‘easy’ the simplest things in life are (like going outside, flying a kite, swimming in the ocean, going out for ice cream, or even sitting in the sun). All of these are things we either struggled to do or did with a lot of preparing and planning.

All in all, it was so great to have my entire family together. Evan definitely learned a lot watching his cousins and he had so much social interaction. He experimented with new types of crackers and snacks that his little cousins were eating and has a new thing for straws thanks to his cousin Aaron. Now home, I think he is wondering “Where did all the kids go?” Soon enough they will all be together again.

The 'Clan'