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 ~

Poo-poo trucks and chicken

So Eliot pood in the bathtub tonight, he really, really did. Not since he was a little minute old has he done that. I had just taken Henry out of the tub and had him wrapped in a towel when I saw my little man crouching in the tub. Eli looked up at me with red rimmed eyes and suddenly there was a whole bunch of "chicken" as Henry called it in the water! OMG!

So, yep, not quite at the potty training stage yet:) Henry is talking up a storm right now. It is as though our whole lives are being narrated by a toddler.

"Car, beep, beep" , "want it", "have it" etc. Eliot is really practicing his blinking:)

Just to end on a little poo-poo note, our day began as a sewage truck parked in front of our house to suck up overflowing plumbing. The boys were quick to watch said poo-poo truck until it pulled away waving, "bye, bye, poo - poo truck".

More snow. Yep, there it is flying around outside, floating little orbs descending on the already pregnant piles of snow lining the streets. Given that it is February still, I suppose that winter is supposed to still be here and present, even if we are so totally done with it already:)

It is going on into the fifth month of no work for our family, Matt and I are looking fervently for any sign, any break that may be on the horizon. So far he has had 2 interviews for jobs that are not nearly enough money or hours. The unemployment dollars are stretched so thin they are practically transparent. I know that others have it worse, I know that we are lucky to have what we do. But I am getting to the WTF portion now.

It might also be the encroaching Republican noise about redefining rape, attempting to re-model the women's right to choose, the Tea Party and all of its racist and white solipsistic propping up. The idea that Texas Universities are vying for more guns at their schools...All of it seems to be piling up.

The whole remembering to be grateful thing, yeah, trying really hard to be humble but it seems to be overtaken by the roaring of anxiety and the blood rushing in my ears. I am scared, really scared of what this all means for our family right now. I feel as though we are running in a little hamster wheel repeating the same actions and hoping that the outcome will be different...soon. One of us must stay with the kids, double dollars for childcare does not even make sense right now. One of must work, Matt has more chance of employment than I at this point, and he has better odds of making money with his teaching license and experience. My childcare expertise is a pittance sum, but I am seriously considering night work? We are searching out alphabetical plan Z's...

We are searching for work out of state and, as a last resort, out of country should we need to.

We would be in dire straits now without the generosity of so many people, but after a point one does not want to be the object of charity. I am exercising my mind to hold on, we are making a date that at such a point as the "job" does not appear that we will try a plan b, c, d, etc. All dependent on how well our kids would do in that given situation.

These are tough times, I know that we are tough too, but our edges are frayed and tired.

We have each other, we have our little family all together. That is something to be grateful for.

The Grand Tour...

I think we have reached the bleak portion of the winter, ugh, January. Our entire house has been to the hospital, or hospitals really in the last while. This hospital visiting is not helping the mood around here at all. Henry at MEEI, Matt at Cambridge and me at Whidden and Somerville for ridiculous injuries; my eye being poked. Really, no kidding, Henry poked me square in the old eyeball and it really hurt. As it turns out I have a corneal abrasion: http://www.emedicinehealth.com/corneal_abrasion/article_em.htm

It looks as though I am all clear, 'cept for some ointment, it's okay.

Eliot is healing well physically, he appears to be a little troubled about anyone messing with him: diaper changes, face washing, hair washing, brushing etc. We know that he has some sensory issues and I will be keeping a close eye to make sure he is doing okay.

Matt is still looking for work and we have been job searching together, he has been applying all over the place. We are keeping fingers crossed that something comes to fruition, Matt is so talented and a wonderful teacher anyone would be lucky to have him. I know, I know, but it's true.

The kids and I have been going to the " Y " to get the lead out and get the sillies out a bit. I am looking forward to warmer weather when we can go the park and enjoy outside. But I am grateful for all the friends and support that we have here in Malden.

Looking at the two corn cakes makes me proud to be their mom, they are so amazing.

Ba-Bye, All Done

We have been home since Wednesday and it was both better and worse than I thought the surgery and hospital would be. Eliot seemed to "know" that we were in a hospital and to understand fully that the people in the white coats were going to get all " up in his grill" so to speak:)

There was screaming and anxiety in the holding room just before surgery, when a nurse or other uniformed person came anywhere near him he would start howling...yes, he knows now.

Thankfully the anaesthesiologist recommended that we try a drug mixed with his Tylenol to relax him. We were happy to try this drug and about 15 minutes after Eliot took the mix orally he looked stoned out of his mind. His adorable little head lolled back as I held him in my arms while his sleepy little eyes stared at the T.V, exclaiming, "Ball, baaaaaaalllllllllll" in a slow drawl.

I went in to the O.R. with him in full scrubs just to settle him while they began the mask, there was no need as he was in the ninth dimension, but I was glad to tuck him in.

Three hours passed in the family waiting room at Boston Children's Hospital, a long corridor filled with four person seating next to windows overlooking more buildings. Some parents looked haggard drinking coffee, others talked too loudly about nothing. Everyone there was stuck waiting.

When our Dr. B came out to let us know that Eliot was great and the operation looked good, we were so relieved. He was in recovery and we could go to him shortly...

Knowing that Henry was at home with Nana was such a gift for us, it really allowed us to focus on Eliot which is what we needed to do.

We went in to see Eliot, he had an IV, an oxygen saturation band-aid attached to his finger in a glowy red light and he looked comfortable. There was no screaming when he woke up, no delirium, we were so blessed. The time before Eliot suffered so much from that wake-up from anaesthetic and whatever they did at Children's certainly did the trick. He woke up slowly, nicely and demanded juice not once, but twice with a shake of his little pudgy hand. He was even a little flirty with his nurse.

The first night in the hospital was terrible, Eliot woke up many times crying and many times had to be given different meds to control his pain /bladder spasms. While he ate a little hot dog, I was warned he may throw everything up. I told the nurses that my son would never waste food like that, this was Eliot after all:) I was right, he kept everything down like a champ.

The morning proved to be a little strange as his cath was removed and yet he was not peeing, his little belly was so taut and round and full by the afternoon that something had to be done. Eliot was so uncomfortable that he could not stand, they re-cath'd him to allow his urine to come out; which it did at a whooping 300cc. Enough to fill one of those vomit kidney pans completely. It was quite impressive.

Dr. B had commented that the pain prevented him from wanting to pee and the bladder spasm meds had relaxed his bladder too much. He was taken off all of the drugs and Voila! He peed, slowly and then more and then on day 3, we were allowed to go home.

No one wants to stay in the hospital, but I felt lucky to go home with my son in pretty good health. Good to be grateful I think.

Eliot tried to hide in the closet to avoid his last vitals check with the very nice nurse and looked at every nurse saying, "Ba-bye, all done" until we really were on our way. He did not even want to go into his room at the hospital, just standing outside the door was close enough. Poor little guy, he has really had enough of hospitals to last a lifetime.

Hopefully that will be our last stay in one for a long, long time.

Now we will do an ultrasound in February just to make sure everything is okay, if it is we won't see anybody until 6 months have passed. Awesome!

The recovery is okay, he thinks he is fine and wants to jump on all the ride-on toys and balloon houses he can, we have to monitor and hold him back from a lot of the rough stuff. But all in all he is doing great.

Pheewwww, I am not even going to utter those fateful words of anything drawing to a conclusion as the last time I did that Matt ended up in the E.R ! That was on the weekend and he had stomach back ache things, worried he got checked out. Looks as though he has one kidney that is a little bigger than the other and he will be getting checked out in six months. Nothing to worry about so far.

So yeah, suffice it to say that we are ready 2011, our little family is ready.

Just another manic monday - The big Surgery Day

Here it is the first day of the new year, that seemed fast somehow. I am hoping that 2011 has some exciting new plans for our little family. Monday is fast approaching, Eliot will be going in to Boston Children's Hospital and Dr. B will be re-implanting his ureter on the left side. It will be a 3 to 4 hour surgery and hopefully minimal recuperation time. It is less invasive than thought before as they will be going into his bladder from the outside in, not the other way around. After a long, long day at the pre-op. appointment on Thursday Matt and I felt confident about Eliot's procedure. I still feel confident but now that it is so close I am a little worried for our boy. I am sure he will be fine blah, blah, blah. But that is our little boy and it is scary.

I will be staying at the hospital with him and I am really hoping that he will recover well and not feel too much pain. I have been reading about bladder spasms that can occur in these types of surgeries and I am keeping my fingers crossed that he will not be one of the ones that it affects. They are super painful and require different meds. for pain management. I am just hoping that our little boy's left kidney will stop being damaged by his urinary reflux and hold onto the 12% function that he has. Some is better than none in this case I am told. Nana aka Shirlee will be staying at ours to help with Henry and the go-between times. We would be completely and utterly lost without Nana and Papa.

I am wondering if we will go in when he is being put to sleep? I have been there for Henry a number of times and while it can be a little weird watching your child fight the mask and its effects, I feel as though it is better they see you before they go to sleep. I can hack it if he can, right?

Pheeewww, I have been writing my crazy little O.C.D. lists and pre-packing all of our things for the hospital. I have made lists of what to do with Henry while we are away, lists of what we need to pack, lists of lists to write, I have made checklists and more lists...I am beginning to realize that part of my coping mechanism in these strange times is the illusion of control. I micro-manage everything that is within MY power in the hopes that everything else will just follow suit. Yeah, I know, a little crazy. But hey, whatever works.

Matt is the only person I could ever do any of this with, really, all of it, which is a lot of "this", trust me:) I think back to the moment I knew that I was falling for him and I said that if we got together it would be something "serious" and I was right. Marrying your best friend is awesome, maddening at times, but mostly awesome. Knowing that we have each other throughout all of this makes it okay somehow - that and our two super cool boys. They are tenacious as hell, ha:)

*Updated blog - check

* Felt cathartic release - check

* Ummm, you get the idea:)

R