Tuesday, August 28, 2012

Evie-Man Live Action: Part 2

Last week, I posted some recent video clips of what Evan is doing these days. Over the weekend I came across some old videos of Evan from when he was 6 months to a year old. They were all taken on our HD video camera and were not compatible for viewing/editing on the Mac unless I downloaded a special application. Boy am I glad I did. It was so wonderful for me to look back at these and see how much Evan has changed and grown over these last two years.

I made a few video collages of Evan for you all to enjoy. The videos of Evan's first Christmas are my favorite ones (especially seeing Evan with his great-grandfather, Papu, who passed this year). Evan was still so itty bitty at 6 1/2 months old, still wearing some newborn outfits. The videos are not super entertaining but a joy for me to watch. I was the camera-woman for these videos so I will apologize for my very high pitch 'mommy voice' and silly commentary as I never expected to be sharing them on a blog. Enjoy!

Evan's First Christmas

Winter & Spring 2011

Beginning of Summer 2011


Monday, August 20, 2012

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!!!


Tuesday, August 14, 2012

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 :-))


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.


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.


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.


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.


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).


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.


Tuesday, August 7, 2012

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 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.


Saturday, August 4, 2012

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.