THIS IS NOT A TEST -- PLEASE STAND BY

beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep

THIS IS A MESSAGE FROM THE MANAGEMENT OF TAKE A WALK ON THE HAPPY SIDE.

THIS IS NOT A TEST. IF THIS WERE A REAL EMERGENCY, I WOULDN'T BE POSTING AT ALL.

WE ARE EXPERIENCING SURGICAL [RECOVERY] DIFFICULTIES.

OUR MEDICAL TECHNICIANS ARE WORKING ON THE PROBLEM AND WE WILL RESUME POSTING ONCE RESOLVED.

PLEASE STAND BY AND THANK YOU FOR YOUR PATIENCE.

beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep

At least my sense of humor is in tact... sort of! Still struggling through the post-surgery recovery. I'd say it's 3 steps forward and 2 steps back but it feels like we're moving more backwards than forward at this point. We've had multiple scares, tears, bumps, bruises and set-backs. Sounds like a Halloween story... kind of looks like one too! Not good!

We tried to come back once we were "on-the-mend" and that's what set us back again, I think. So this time, we won't be back until my poor little guys are fully mended. Totally, 100% back-in-the-saddle, as they say... 'cause right now, we're back to walking like cowboys and no riding at all.

Prayers are greatly appreciated if you're so inclined. Thanks for your patience.

xo maggie

Down Syndrome Awareness -- 31 for 21 -- A Day Behind; Delays Ahead!

Here's my post for yesterday. It was delayed! No particular reason except I didn't do it... yesterday. But, here it is today.

I purposely didn't post for Down Syndrome Awareness yesterday to make THIS point. Delays are just delays. They are not the end of the world. Nor the end of my child's development. It's just a delay. Whatever the goal was, it'll come in it's own time. Brian and Michael -- who happen to be blessed with that extra 21st chromosome (aka Down syndrome) -- will reach those goals when they are ready. And, yes, there may be things I can do to help them get ready. To help them reach those goals a bit sooner... maybe.

I equate this to being stuck in a traffic jam. (You can tell I'm from NY right?) I can wait it out, creeping along, mile by mile... making my slow progress. I can detour or try another route which may or may not be better. I can distract myself with music or another activity (hands-free phone, pit-stop, etc.). I can be patient or impatient. Whatever I do, I am still delayed. Stuck here in traffic.

Often, when I encounter a delay, I choose to detour. For me, any progress or movement in the general direction I want to go is good... preferable to sitting still and doing nothing. That's my personality. One of my NYC commuting rules with my sister was to keep moving. When the LIRR let us off underground at Penn[sylvania] Station in Manhattan each morning, to get out of those deep, dark and sometimes smelly train tunnels and up to ground level we kept moving. If we reached one staircase on the platform that was overcrowded, we'd keep moving to the next, or the next, or the next until we found one that was moving. That was key for us. For me. (There's my "Just keep swimming" mantra again!)

This rule holds true with my boys' development too. Though there are delays (you've probably already heard my 'no limitations' speech), we just keep moving it along. When we hit a delay, we change focus, try something new, go to the next proverbial staircase, keep moving toward the goal. Try a different goal and come back to this one later. Again, it's my personality that dictates my methodology. Could I wait in line until they reach the goal? Sure. That's just generally not MY way.

The thing is, we need to keep in mind that a delay is JUST a delay! It doesn't mean you can't or won't get to the goal. It just might take a little longer. Children with Down syndrome generally develop along the same lines as children without Down syndrome. They just do it their own way. Maybe they're waiting patiently in line. Maybe they're detouring, taking their own route, or distracting themselves with other enjoyable stuff -- like life -- or other important development. Maybe they're just taking their own time. Key words: Their OWN time. Not mine. Not yours. But theirs! Either way, it's just a delay!

Down Syndrome Awareness -- 31 for 21 -- Our Penoscrotoplasty Recovery Story...

End Note: As you're making your decisions. To investigate. To pursue. To intervene surgically or not. I just want to provide you with another pertinant piece of information, you should be aware that penile sexual function is not affected by an inconspicuous penis. It is completely functional! However, the larger the fat pad, the less -- how should I say this? -- access there is to the full penis, erect or flacid. Also, increased girth (ie. excessive weight) exacerbates the problem though the surgery does help with this... to a point. That is, hyper-obese men often have this problem and this surgery will not correct it fully or at all depending upon the level of obesity.



This is NOT a botched circumcision. In fact, it has little or nothing to do with the circ at all.

THANKFUL THURSDAY - On Friday - Short On Time But Not On Thanks!

OK, I'm a day late and a dollar short again! But, I'm never short on things to be thankful for...

[1] I'm thankful that all of my children are on the mend. Surgical wounds are healing, stomach viruses gone, I'm not even feeling sleep deprived at this point! We got the good word at our Post-Op appointment that all is well and the boys' wounds are healing. They're now beginning to lose stitches (as expected) and are entering into the itchy phase of healing. This could get interesting!

[2] I'll be incredibly grateful to resume our "normal for us" schedule of school drop-offs. The boys were cleared for unrestricted school and activities beginning Monday! Yeah!

[3] I'm thankful for these 3 beautiful children I have. 8 years ago today, I became the most blessed mom in the world when I gave birth to my beautiful Old Soul. What a beautiful, peaceful and natural beginning to motherhood! I relive that day each year on her birthday and it makes me smile and feel warm inside. (I guess this is what my Mom's been talking about for the past 47 years, when she calls to wish me a happy birthday LOL!)

[4] I'm grateful for the 1-week reprieve from throwing the Old Soul's birthday party for her friends. It would normally have been held tomorrow in a big friends and family indoor/outdoor bash but because of our recent trials and tribulations... we split the family and friends and postponed the latter until next week. And, I couldn't be happier about it. Family will celebrate with us tomorrow and I'll have an extra week to make her Post-Halloween Costume Ball with her friends the super fun and memorable event she wants and deserves.

[5] I'm thankful for my wonderful friends who have been my life line and phone support through these past weeks of quarantine, surgery and recovery. It would have been tough without them. Special thanks to Tammy, Nicole and my sister Loree who checked on me nearly every day. Don't know what I'd do without you ladies.

Thankful this week is finally over! LOL

Special Exposure Wednesday - Creative Self-Portraits

These are Brian's self-portraits. Lounging and one leg comfortably crossed over the other. Very Brian! He laid on the couch and snapped over 100 digital pics from exactly this position.

These are Michael's self portraits. He took 150+ digital pics all over the house catching several shots of each "subject" he studied including the cat, his sister, the dog, the balcony, his brother and his own feet and face. Very Michael!

They may be identical twins but they are very different from each other. And, they may have Down syndrome but that sure doesn't stop them from being just like every other 4-year-old kid!


See more Special Exposure Wednesdays on 5 Minutes For Special Needs!

Down Syndrome Awareness -- 31 for 21 -- We're All Members Of The Same Team

I read yesterday's post to my Old Soul before publishing. Here's the conversation that ensued:

Old Soul: You don't see a lot of children with handicaps around much anymore.

Me: You do realize that many people consider your brothers to be handicapped because of their Down syndrome.

Old Soul: They're not handicapped. I never even think about their Down syndrome. They're just Michael and Brian!

Me: That's really nice. In fact, a handicap is just a weakness. And we all have our weaknesses.

Old Soul: Yeah, like there are parts of Math that I just don't get sometimes.

Me: Me too! Math is one of my weaknesses. We all have weaknesses. You know, on a bowling team, a low-scoring team member is called the team's "handicap".

Old Soul: Why? That's not very nice. It doesn't even make any sense.

Me: Because that low-scorer is considered the team's weakness.

Old Soul: That's not true. They're just another member of the team!

Me: [smiling]

She's right! We are all simply members of the same team. The Human team! I wish the whole world could think like my Old Soul. She makes me so proud! Every time she opens her mouth she spews such deep thoughts and wisdom beyond her years. I keep thinking, "I must be doing something right!"

Here's a deep thought: Maybe her Old Soul is smiling and saying the same thing about me. LOL

Down Syndrome Awareness -- 31 for 21 -- "God Doesn't Make Mistakes"

A new-found friend and Co Mom-of-a child-with-DS Blogger, Tracey at http://thevelander4.blogspot.com/, shared this on her blog. And, though I generally prefer to create content on my own versus just circulating other folks' content, I thought this was worth repeating. So, for all of you who happen to read my blog but haven't seen this on Tracy's, here are some invaluable words of wisdom she received when her T21 angel joined her family. I've borrowed this with her permission to share with you:

A reminder that God doesn't make mistakes.

"As a small group of political and church leaders look on,
Jesus lifts a mentally handicapped child out of her high chair, kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?
I could do it; but I will not.
I am the Lord and not a conjurer.
I gave this mite a gift I denied all of you -- eternal innocence.
To you she looks imperfect
But to me she is flawless,
Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.
She will never pervert or destroy the work of [my] hands.
She is necessary to you.
She will evoke the kindness that will keep you human.
Her infirmity will prompt you to gratitude for your own good fortune...More!
She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.
You have not chosen me.
This little one is my sign to you.
Treasure her!"

And I say, "Amen!!!!" I wish the whole world could see how our children with Down syndrome are an absolutely beautiful and flawless gift to this world! Thanks Tracy!

Down Syndrome Awareness -- 31 for 21 -- Penoscrotoplasty: The Decision and The Surgery!

On a personal note, thanks to all of you for commenting and specifically expressing your interest in this topic. It is for all of you that are experiencing that sinking feeling that something is just not quite right "down there" that I am writing this story. I find the shroud of secrecy that exists regarding the male genitalia keeps such conversations out of the mainstream. For mothers of sons, we need to be able to talk about it, to confirm our suspicions and to take action... if we choose to! I've received many comments from Moms regarding their sons' penes and this problem. Some with Down syndrome and some without. So, for the record, this is not necessarily or specifically an affliction for those with Down syndrome. I've heard from 1 Mom whose son with Down syndrome outgrew the condition. I've heard from several Moms whose sons with Down syndrome did not outgrow the condition but learned to live with it... with modifications (and assistance in some cases). The choice to surgically correct may or may not have been presented to these Moms... or they may have made a choice not to surgically correct. I do not know! And, I've heard from 1 Mom who chose the path I'm on now and, though her son's recovery was difficult, she has absolutely no regrets and one year post-surgery, her now 6-year-old son has been potty trained and urinates using the stand-up method and is infection-free. Every body's child is different. Every body's journey is different. This particular saga is mine. The decisions I made were made specifically for my children. I'm telling it to get the word out and to give those who walk in my shoes -- or shoes that are similar in any way at all to mine -- that there are options. My old boss used to say, "It's all about choices!"

If you happened to miss Part 1: So What Kind of Surgery Did My Boys Have Exactly? Click here!

Part 2: Penoscrotoplasty: The Decision and The Surgery!

The Decision: I went home from the new Urologist/Surgeon thinking I would not put my sons under anaesthesia or the knife unnecessarily again. Our post-surgical Tonsillectomy/Adenoidectomy experience last March was horrendous and I did not want to risk their well being... Besides, I wasn't sure my heart could take their pain again either. But, it was their well-being that had me investigate the problem in the first place. I wasn't sure that "doing nothing" was doing anything... for them and their well-being. So, as with every tough decision put to me, I over analyzed it! I did online research. I asked everyone I know (much to the male listeners' discomfort). And I put pen to paper... writing out several pros and cons lists. In the end, with all the information I gathered, my list looked something like this:

If I do NOT correct the boys' inconspicuous penes problem through surgery NOW:

PROS:

1. They don't have to undergo surgery. They suffer no pain, no risk of delay due to potential surgical/anaesthesia complications or prolonged absence from school etc.

2. They might outgrow the fat pad themselves so the surgery would have been undertaken for nothing (or would it?).

CONS:

1. They undergo surgery again. Anaesthesia introduces the potential risk of brain damage and/or delay. Pretty much guarantees they will have pain, discomfort and absence from school. Worry about post-surgical recovery again (went south last time, could happen again).

2. Toileting. Cannot potty train them in a "normal" way which could make them the object of ridicule in school going forward (in diapers or toileting in a modified style). Will take longer than the extended length of time I'm already expecting AND complicates the procedure because I'd have to teach them to pull back the foreskin prior to urinating... not likely they'll ever do this given past trauma. Want them trained, if possible, for kindergarten next year. Is that possible?

3. Hygiene. Given the foreskin tearing and bleeding scene with the first Urologist, the boys won't let me touch their penes, let alone pull back the skin to clean. If I don't correct, the urologist says I have to teach them to do this themselves. NOT very likely... which means introducing irritation, infection and potentially life-long dependence on others for good hygiene.

4. They're not likely to outgrow the fat pad so this will not likely "fix itself". They will have inconspicuous penes for life.

5. Inconspicuous Penes increases the likelihood of social ridicule. Just another difference that will potentially draw negative attention to them and single (or double, I guess) them out from everybody else: Identical twins... with Down syndrome... and small penes... AND they sit backwards on the potty to urinate. Not a good forecast!

I spoke with the Sarge, listed the pros and cons as I saw them and he felt strongly that we should go forward with the surgery. I guess size does matter (LOL). I discussed it with our Early Intervention Social Worker and she posed the deciding question: If your boys did not have Down syndrome, would you correct this? The answer was ABSOLUTELY YES!

Why hadn't I thought of it that simply? The decision was made... Penoscrotoplasty!

The Surgery: The surgeon was surprised to hear from me after my less than enthusiastic demeanor with regards to the surgery upon my departure last visit. I expressed our interest in going forward and he introduced me to the surgical scheduler. She gave us a surgery date of July 7th. But, I ferreted out that the follow up included no submersion in pool water for 6 weeks. There was no way I was going to rob the fish, I mean the boys, of their summer. They LOVE the water! And since they were approved for the Extended School Year (ESY), they would miss school regardless. So, they rescheduled us for September 4th, right before Labor Day. I passed on that time frame too. I didn't want them to miss the beginning of the school year when classroom routines were set in place. So we finally agreed to Tuesday, October 13th. I was given instructions to schedule a pre-op appointment with our Pediatrician the day before surgery to receive clearance and I'd be provided with specific pre-surgery instructions and the surgery times the day before, October 12th (Columbus Day).

The summer passed quickly and we were full swing into the start of the school year when the surgery date crept up on us. I scheduled a pre-surgery consult so that the Pediatric Urologist/Surgeon could show me exactly what he planned to do. He explained that he would re-open their circumcisions to open up the foreskin, he would "clean-up" Michael's uneven circ and release the skin bridges. Then, he would pull back the foreskin and put two stitches on top on either side of the penis, and one stitch on the bottom in the center, all to hold the skin back at the base of the shaft. I also wanted to ensure that my expectations were in order with what the result was actually going to look like on the other side of this endeavor. Much to Michael's chagrin, he pulled back the foreskin and demonstrated to me that their post-surgical genitals would look like "normal" circumcised penes. Satisfied, I confirmed our appointments and went camping....

I took the kids on a long-planned weekend camping trip (camper not tent) with about 15+ of our closest friends and, wouldn't you know it, Brian came down with a mild post-Hershey Park, PA cold. I pulled both boys from school in an attempt to ensure good health for surgery and imposed a self-quarantine "no one in/no one out" rule in our home. Though I had significant doubts on Friday before the surgery, by Monday morning our trusted Pediatrician cleared the boys for surgery on Tuesday. The rest and relaxation and quarantine worked! We were finally going to get this behind us.

After receiving the "all clear" I took the kids to the petting zoo and Hay Play Yard at Atlantic Nursery and then out to lunch at Wendy's... fully expecting to receive my pre-surgical instructions and surgery times via a message on my home phone or a call to my cell phone. It didn't happen. I began calling around to the surgical center, our Pediatric Urologist/surgeon's office and the Outpatient pre-registration nurse that called on Friday to confirm the boys' names, address and other pertinent information. Each said it was the others' responsibility to inform me and that I should wait for the call. I called again and again and each time was told to wait for the call. I was massively uncomfortable when each of their offices closed at 5 and/or 6 pm and I still hadn't heard anything. I finally reached the pre-reg nurse at 7PM and she apologized saying she didn't have access to the schedule information and, "technically, the nurses have until 8PM to call you with the information!" 8PM came and went. The phone never rang. Had I gone through all of this quarantining only to be put off due to administrative mistakes? At 9PM I called the Pediatric Urologist on-call emergency number and explained that my boys were scheduled for surgery in the morning but that I had no pre-surgical instructions or surgery times. He called me back. Listened. Apologized. Gave me very high-level instructions -- Don't eat 6 hours before surgery. Apple juice and water only up to 3 hours before surgery. Then nothing -- but he did not know and could not access the surgery times. He instructed me to call the surgical center at 6AM when they opened and request the scheduled surgery times. To say I was disappointed or that I expected that doctor to handle it for me, I think, was natural. To say I was furious that I couldn't plan my night-before-surgery and keep things calm and flowing on my end. I wanted to give the boys a bath at the last possible moment knowing it'd be at least 4 days before they could bathe again. But, with all the calling around, it got late and I wasn't sure we were even scheduled for surgery at that point. I was worried that we might not be able to go forward because of their oversight. I thought if we were scheduled for the afternoon, maybe I could bathe them in the morning. No information was available to help me. So, I bathed them late Monday night... Not knowing. Having your children undergo surgery is stressful enough without being subjected to this kind of oversight. I began to worry about the competence factor. If they couldn't remember to call me, would they remember to perform the correct surgery? Fortunately, each of my guys only has one set of genitals so they couldn't amputate the wrong leg or anything like that. God help them if anything got amputated! (LOL... sorry, humor is what helps me through these situations). Between the worry and the frustration, I didn't sleep a wink that night!

At 6:30 AM I reached the surgical center and when I mentioned I'd never received the call, I was told "I think one of the nurses left you message yesterday. Sorry, we must have had the wrong phone number!" No comment. I didn't want my reaction to affect their treatment of my children. "Your boys are scheduled for surgeries at 11:30 and 12:30. [pause, muted discussion in the background] No, no wait. 10:30 and 11:30. [pause, more muted discussion in the background] No, no wait. Oh, just be here at 9:30 and DON'T LET THEM EAT OR DRINK ANYTHING!" Am I the only one having trouble understanding how to apply these instructions given the lack of information? Fortunately, the boys were still asleep so I showered, got the Old Soul off to school, got everything ready for a 9:00 am departure and then waited. They woke, dressed and we were off. No one talked about or asked for food or drink. There was no time and it wasn't allowed anyway. As a matter of circumstance, Sarge and I fasted with the boys. Seemed the right thing to do.

We were taken in quickly. Stashed in a room with a television and asked a myriad of questions regarding the boys' medical histories... 3 people firing questions at the Sarge and I at once. We discovered the admitting nurse threw away our Pediatrician's clearance papers but they were able to fish them out of the trash and get the information they needed. (Hmmm! The question of competence comes to mind again.) Our Pediatric Urologist/Surgeon stuck his head in to say hello as did the surgical RN. Two people I like and trust! And, then we met with the Anaesthesiologist. I explained the difficulties my boys had with anaesthesia in the past to which he responded, "I know Downs kids." Uh oh! He's using diagnosis-first language and he's lumping my children into a group as opposed to listening to their individual reactions to anaesthesia, surgery and pain meds. Not good. I overlook it and continue to provide the pertinent and specific-to-my-boys information that I feel he needs to know in order to do his job well and, most importantly, to keep my boys safe and healthy and alive! We're given 2 sets of mini-hospital gowns, surgical caps and non-skid socks for the boys and a one-piece suit for me. I'm on the surgery brigade and Sarge is on the recovery brigade. We're told to dress Brian first. He looks adorable in his gowns. Sarge snaps a few pics and he's called in for surgery. It is exactly 11:30 am.

It reminded me of the red carpet! Or, death row's dead-man-walking (not a good reference). Patients and employees stopped and watched him, smiling, as he passed. He's waving and saying hello. Wearing his Blueberry Beret (like Prince's song, "Raspberry Beret" but his is scrubs-blue) and everyone was commenting on how cute he is. He spotted the surgeon in a side room and waved to him too. Hit the button to open the big automatic doors into the surgery hallway and stopped dead in his tracks at the doorway of the operating room. "NO MOMMY!" I carried him in against mild resistance -- I think he knew resistance was futile -- and laid him down on the table. He'd fallen silent but his big green eyes were pleading with me and both of his hands gripped mine tightly. "It's OK, Brian." They masked him loosely and through the mask he mouthed "no Mommy" until he faded away. Eyes rolled then closed. I personally find the anaesthesia piece of surgery to be a very difficult emotional experience.... especially because I've had the unfortunate experience of putting a beloved pet to sleep. Very similar except the pet doesn't wake up. My mind replayed those past scenes with my beloved pets and my stomach did a flip. This is my baby! It'll be all right. "OK, Mommy, kiss him one more time" and I did. Then I turned toward the door. Looking back at my sleeping boy I said to the surgeon, "Good Luck" and took my leave... walking back down that hallway alone. Without my brave and confident little man in his blueberry beret.

Back in our holding cell, Michael had retreated to a hiding spot behind the big chair. He was quietly chanting, "NO! Bro! Where Bro?" I bent the television arm so he could watch Dora The Explorer from his chosen safe spot while Sarge and I chatted. The 40 minutes passed slowly... and quickly. The surgeon came in smiling with his stars and stripes do-rag and told us everything had gone smoothly. They'd be moving Brian into recovery and Daddy could join him there. "We'll be coming for Michael shortly!"

I dressed Mikey, against his will, in the gowns and had no luck keeping his blueberry beret in place. This one would NOT go quietly. I carried him through the halls which echoed with "No!" and "Bro?" and into the operating room. He fought me as I put him down on the table and, like his brother, continued to protest -- a bit more vehemently than Brian -- until the anaesthesia took effect. The final kiss. The "Good Luck" wish to the surgeon. And the lonely retreat back to our holding cell.

Not ten minutes later we were bedside to a quietly sleeping Brian. "Let him sleep!" the nurses said. Sarge ran out for a vending machine egg salad sandwich, coffee for him and Diet Coke for me. By the time he'd returned, Brian was awake. In short order, Michael joined us and though he'd been given "a little something extra" in his IV because he'd awakened so quickly after the surgery, our little fighter fought to stay awake and kept up a steady protest as the Sarge and I rotated back and forth between their beds. They drank their apple juice immediately and without repercussions... asking for 2nd and 3rd helpings. The local anaesthetic worked so well on Michael that he was under the impression the IV in his hand was the "boo boo". Unfortunately, Brian was not that lucky. In addition to the discomfort of an IV in the top of his foot, the pain in his genitals quickly became unbearable and he was given additional pain meds that delayed our departure for home. The surgeon visited and explained that the surgery went exactly as planned. No complications. The recovery nurse provided written instructions for their post-surgical care and by 3:oopm we were cleared for take off. Have you ever tried to carry a 47 lb boy without having them straddle your hip? That was one of the restrictions we were thankfully spared by bringing in our big red double stroller. We ducked out a back exit and by 3:10pm the boys were strapped in the minivan, eating Tostitos, drinking apple juice and watching Monster House on the portable DVD player. We were on our way home. Happy to be out of there. The surgery behind us... Recovery ahead!

Stay tuned. Our Recovery Story is still unfolding and it has not been without incident, unfortunately. Wednesday is our post-op follow-up appointment so I'm going to skip a few days and give you a break from all this drama. (LOL) But, I'll be back to let you all know the outcome... the good, the bad and the ugly! And oh yes, there has been some ugly stuff! And some scary stuff! (That's my series cliff-hanger!)