Patience is the companion of wisdom. - St. Augustine

As I begin to write, Henry is sitting beside for what seems like the hundredth tim-out of the morning! He has been trying a new "screaming" technique with Eliot to see if out talking him will get him the toy. Ugh, not impressed to say the least.

Life has been looking up for the Ferrara-Brown clan at long, long last. Matt just accepted a position at a language academy ( read Hagwon for all my ROK peeps ) in Harvard Square in the trendy and bohemian rich Cambridge area. Although Matt has only been hired on as summer staff, there is the possibility of full-year employment. I know that they will be blown away by Matt's supersonic teaching styles and have to have him there:) Matt really is a great teacher, patient, unassuming and friendly while being totally knowledgeable in all things ESL. Just saying:)

The boys, aside from Henry's anarchistic behaviour, are doing well. Eliot speech continues to blossom and he is finally putting together two words and expressing himself in new ways. While his expressive language flowers, his sensory issues seem to be taking a bit of a nosedive. Getting Eliot anywhere near the bath, nevermind in the bath, is a test. A couple of weeks ago he peed in the bath and completely freaked out, both Matt and I were pretty laid back about the urination thing and even Henry who was sharing the bath did not seem to mind much. However, Eliot was just beside himself, I wonder if it was just the involuntary and unpredictable peeing that set him off. Since then he has been afraid of the bath.The other night it was like trying to bathe a cat: Eliot howling like he was being set on fire and Matt and I trying diligently to wash our squirming son; his fat little foot constantly climbing the lip of the tub trying to escape. What fun!

Our visit with the Children's people was rather vague, they were adamantly clear about his non-Autistic diagnosis but did not seem to have any other ideas as to what was actually going on with Eliot. What they were sure about was how ELiot needed MORE occupational therapy ( 3x a week) and they would follow up with us.

Tomorrow morning we are seeking a second opinion with the May Institute and I am really hoping that I don't get the runaround. It is very hard to illustrate what we are dealing with when Eliot has a wonderful time with little sensory play and lots of quiet, calm ladies. I want Eliot to "reveal himself" a little so that we can give him all the help that he needs.

In the meantime, I am bravely thinking of going to the wading pool today. Eliot playing with cars and Henry in the water? We shall see, wish me luck:)

R

"All who joy would win must share it, happiness was born a twin" Lord Byron

Summer is here and suddenly our week of spring is gone:) The boys are changing and growing in leaps and bounds, the second birthday a month gone now. The way that they talk, and move, and question things is evolving so much. I see the boys they are becoming, and I am filled with such pride and love for these two miraculous potatoes.

We continue to try to hunt down and solve Eliot's issues as his sensory sensitives ( sibilance?) are becoming more and more emphasized. The poolside weather approaches and with it my own apprehension that it will like last summer: Eliot horrified to touch the water and literally clinging to the sides of the fence that surround the little wading pool. The pool at the "Y" also stirred fear and worry in Eliot who took a few steps in the therapy pool and stood, rather like a block of wood. Matt and I are searching for the name of this thing that prevents Eliot from picking up certain foods, and that dismantle him if there is a change in routine, a name for the thing that enrages him should his "man" in his toy car not sit in the absolute perfect manner...It is a difficult and daunting thing to express. All that Matt and I know is that it IS there and we want to help him in the best way we can. Pheewwww, who knew parenting would be like this? :)

That said, Eliot's language evolution is putting his last diagnosis to shame, his "communication disorder" is farcical as we watch him point, name and sing. He is a veritable wealth of words and information. Henry also is chatting up a storm and insists that Eliot do his bidding, "Eyyot, eat dis, Eyyot have dis, Eyyyot come inna water, it'da be fun". They are so close, so present for each other, I feel lucky. That is in between the fighting and screaming for toy supremacy:)

Matt has an interview on wednesday and we are feeling good. My EMT course starts in August and I am hoping to attend. As our job hunting net has been cast further and further, we aren't sure where we will end up. Both Matt and I are going where the jobs are. Rochester, Vermont, Maine...

We are hopeful, or at least trying to be. Our boys and our love, in between the fighting and screaming for TV show supremacy:) keep us strong.

until the next time,

R

Three cheers for Eliot!

This week has been a big blur of hospital visits, both for me and the kids. Eliot and Henry had their well baby visit on Monday to mark their 2nd birthday. Aside from a strange limp that Henry developed after a hepatitis a/b shot, both boys are strong and growing well. Yeah, no small feat after such shaky beginnings:)

Friday was Eliot's big renal day, he had an RNC ( a nuclear medicine test) done and it looks like the ureter reimplantation surgery was a resounding success: no more reflux! That means that his crappy kidney will always be crappy, but no more damage is occurring, yeah! Dr. B reported that ELiot had "made his day" and he sure made ours. Unfortunately, Eliot was so scared and the water involved in the test to help him urinate ( a sensory no-no for Elli ) was terrible for him.

Following the RNC poor Eliot had to get an EKG done on his heart ( as per the geneticists orders) and he did very well considering the stress of the first test. He was able to watch Elmo on the TV they had in the room ( awesome ) and he tolerated it quite well. I was so proud of my boy, he is so tenacious and he has been through so much. Eliot's heart is fine, thank goodness and no, dear young and distracted doctor, he is NOT adopted:( Whatevah!

We are finally able to take Eliot off daily antibiotics and perhaps not worry all that much about the little dude.

Yep, I hear them waking up...

Happy birthdaze...

We are back from what seemed like a long time gone! Henry and Eliot were amazing, and toddler-ee:) The flight going to Toronto went swimmingly, that is until we ended up in the jet bridge disembarking from our double stroller in the middle of some sort of roaring noise! Both boys immediately burst into tears and insisted that I pick them both up. What was so fantastic is that we had the entire line up of people waiting behind us as I tried to shimmy both boys into their seats in a very narrow aisle. It was fairly painless while in the air as juice and magnadoodles did the trick. I jimmied the pile of luggage and car seats ( think Grinch sled) and the stroller one arm pulling, one arm pushing. The entire time I was whispering to myself, "You are awesome," I am sure many people were admiring my crazyness, ha,ha!

The days following touchdown were difficult as both boys came down with a stomach bug that quickly spread to my Dad. All involved were crotchety and Eliot enjoyed a Monty Pythonian puke that painted the walls, couch, and carpet as our relatives seated in a circle around us watched:0 Needless to say, Eliot felt much better afterwards.

The boys enjoyed some indoor playground time and "Poppie" was great at helping to find things for them to do in the rotten weather( sleet, snow and rain). It was a little tight at home and difficult for the boys to keep out of things and my dad's office. On the whole I was ultra proud of my awesome kids for negotiating a new place while not feeling well.

The flight home was also great except for a d-bag of a security lady who asked me, "How are you gonna do this by yourself?"when referring to me and my screaming brood. Thanks, I thought, are you offering to help? I literally had to shove both boys through the scanner, nice and one point for Mommy! Nothing a little chocolate milk couldn't fix.

And today, a day before both of my little cheese buns turn two I am awed at the struggles they had on this week two years ago to now. I love you, boys. You are my everything:) Now I know why I got a Gemini twin symbol tattoo, number 2 - for my best 2 and my honey, Matt.

Poppie and Henry and Eliot all share the same birthday, April 26th:)

This was Henry

on his actual Birthday:)

Little Eliot at the NICU in

Montreal - he was so sweet and little.

Little Henry with his feeding tube - he still looks

the same:)

The first time I saw my boys while I was on the gurney after my c-section.

The whole gang today! They really do grow~

Show me a sane man and I will cure him for you. - Carl Gustav Jung

Yep, gonna take Cheech & Chong to Toronto. Just me and my "lap child" and my ticketed kid. A little nervous, yep, palms are starting to sweat a bit. But, the good news is, I did it before. In fact, one year ago I took both kids and a huge car-seat and my double stroller, luggage, junk. Yeah, that's probably why I am nervous:) lol.

I have a "Cares Harness" for my one kid, and movies and cool unopened games for the short 1.5 flight. It'll be okay. Right?

I am looking forward to seeing the Motherland, friends and family after the year it has been. Poppie and Pops will be happy to see the kids and vice versa.

I will share about how it all goes, fingers crossed.

If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem. Everything else is inconvenience. ~Robert Fulg

We spent last week going to the Ymca play group which was really good because event though it is spring, the weather is not cooperating! Henry thoroughly enjoys his jumping time in the bouncy house and of course seeing his friends. Eliot as well loves his practice dribbling and throwing and catching balls - this "ball" thing is his latest love. Looking forward to going to Toronto to visit the Motherland in a couple of weeks:)

We spent last week at the genetics department of Children's having Eliot measured. Dr. J was thorough. The first discovery was that Eliot has a forked uvula, a split or heart shape instead of the usual droplet shape at the backs of our throats. Apparently this is a form of a cleft pallet, genetically that it. We have an appointment with an ear/nose/throat Doctor to see about that and the impact it may be having on his ears. Interestingly, this uvula thing can also have an impact on his speech. Hmmmmm....

As well, we have to double check Eliot's heart as he was born with a PDA - a duct that should close after birth to allow blood flow to the heart etc. We will see a cardiologist to determine if everything healed up the right way. All of these things are to basically rule things out.

Dr. J assured us that this is how they do it, rule things out etc. He was quite interested in Eliot's eyes and how they did not look like Matt or I. We shall see... All of these Genetic things are scary, Fragile X syndrome, Noonan Syndrome and the list goes on...

We are often told with Eliot that has this or has that beginning in utero: Downs, CF and that list goes on. He was born and he was okay, we will hope for the same now.

In other news, I got a chance to do some free lance writing now, I am excited about that. Matt is thrilled about more photography shoots to showcase his talents.

As the quote says, " ...everything else is inconvenience". We just have to be hopeful and be grateful.

"We are all in the gutter, but some of us are looking at the stars" - Oscar Wilde

Ah yes, the stomach flu - how awful that vomit and diarrhea can actually be permitted to coexist together. Tuesday afternoon both boys began the horrendous journey into the "stomach flu zone" which began with a few rather benign watery poos and devolved into something much, much worse; Projectile vomiting, screaming, diarrhea and long intense 'bouts of whining and whimpering.

Both Matt and I feel so badly for our kids and also, conversely have the urge to quietly leave them at Target for an hour in a paper box to fend for themselves:) So far we haven't left them anywhere, it is probably in part due to the fact that they are feeling a little bit better today.

This is day 5 of this monstrous bug, it had better get its meaty claws out of my family soon, or ELSE!

Spring is here, or at least approaching at a fairly leisurely rate, I will take it. Nice to have a little sun on our bleached and drawn faces. My double stroller can actually fit down the sidewalk and I am feeling a little lighter, a little happier.

Matt and I have been up to all kinds of brave things these days, no not just marriage and parenting twins:) But also getting our little Eliot assessed at the Developmental Medicine Center of Boston Children's Hospital. It would take a long time to fully articulate everything leading up to this, suffice it to say that both Matt and I saw behavior in Eliot that we felt on a very gut level was "something".

The good news is that he is not on the Autism Spectrum for which we are truly grateful, and that he has a "Communication Disorder, Not Otherwise Specified, he will be getting help from a speech pathologist to help with this as well as some other services down the road. We will also be getting him down to the Genetic Testing Center as well just to rule out some issues there. The even better news is that Eliot scored above average in cognition and problem solving in his evaluation, this as our Doc said points to above average intelligence ( I knew that anyway:). He scored lower in expressive language ( We also knew about that:). All good news, we are happy that Eliot will be getting any and all help that he needs.

Henry is doing well and speaking in sentences now, "Mama, want chocolate milk, like it, peeease" for example. We are blown away with his language ability - he is not even two yet! Eliot's frustrations over communicating are probably exacerbated because of Henry's ease at communicating.

Matt has some hopeful employment opportunities coming down the pipe and it looks like I will be staring back up with my freelance writing, yeah! Then on to EMT school, goody, goody.

I feel like we are finally starting to surface from the lower levels... yeah!

Those who are Awake
live in a state of constant amazement ...

~ Jack Kornfield ~