Thursday, October 29, 2009
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.
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.
Sunday, October 25, 2009
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!
Saturday, October 24, 2009
This is NOT a botched circumcision. In fact, it has little or nothing to do with the circ at all.
Friday, October 23, 2009
 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!
 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!
 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!)
 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.
 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
Thursday, October 22, 2009
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!
Wednesday, October 21, 2009
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!
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
Tuesday, October 20, 2009
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.
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!
Monday, October 19, 2009
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!"
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!
Sunday, October 18, 2009
I've been beating around the proverbial bush with regards to their surgery and promising a candid discussion for all you Moms who are thinking you might be experiencing the same thing or something similar. So here goes:
Brian and Michael were born 8 weeks premature, almost 5 lbs each. Thank God they didn't stay in there those last 2 months b/c I think their size would have just about broken my back... which was already in spasms carrying these two little linebackers. They were long and wicked skinny with barely an ounce of meat on them but all of their pieces and parts were in tact and functioning on their own. Thankfully! This included their penis-es. Not sure how to pluralize that word... peni? penis'? penises? LOLing... just looked it up in my trusty Webster and though penises is correct, I think I like the penes -- the 2nd e pronounced as "ee" -- best... so that's what I'll use going forward... And, BTW, that's my learned-something-new for today!
The boys were circumcised just prior to their separate departures from the NICU (4 weeks apart due to Michael's NEC infection). As such, their circs were done by different individuals. Brian's by the MD on rounds and Michael's by a midwife on rounds. In the weeks and months that ensued the boys gained weight and I began to think, despite limited experience with little boys' penes (LOL) that maybe Michael's circ was not quite right. Very uneven and a bit of extra skin left around the top. At about a year, with both boys well into the "typical" developmental growth chart, their penes were rapidly disappearing into the foreskin... Michael's leading the retreat. The progression was like blowing up one of those long and skinny balloons. As the boys grew, or the balloon was blown up, the protruding end of their penes was disappearing. I brought my concern to our Pediatrician's attention and he explained that the entire penis was there and in the "normal" size range, but the penis was being overshadowed, so to speak, by the baby fat pad developing in their groin areas. Generally, this condition would resolve itself as the boys grew up and the fat pad dissipated. The official diagnosis was "inconspicuous penis". Now that's the most apropos medical term I've ever heard! That's exactly the term I would have chosen.
Of course, I researched to find out as much as I could about the diagnosis online... but that's just me. I confirmed everything my Pediatrician had told me and garnered additional information about surgical correction which was available if needed and warranted in some cases for various reasons.
A year later, the problem had become much more pronounced -- or less pronounced depending upon how you look it. In the world of Long Island Clam diggers -- my world, BTW... living in a bayman's cottage originally built in 1826 and occupied by clam diggers and baymen -- the boys' penes looked to me like very small "piss clams" (or, for a wider frame of reference, like the snout on what is known as a "steamer" in the culinary world). Or, like the little turtle had pulled his head in but left the neck of his turtle-neck shirt hanging empty out there. Please bear with me, I am not making light of this... ok, I am... but I want to give as accurate a description and visual as possible so that anyone who has a son with this issue will be able to recognize it and choose their own path. In my vast experience (LOL), their penes didn't look right so I asked our trusted Pediatrician for a referral to a Pediatric Urologist.
So, I see the man and provide him the boys' urological history (which is everything I've just told you all). He examined them and told me that the penis is a self-cleaning piece of apparatus and I shouldn't touch it... Wait! He'd never met a teenager with an inconspicuous penis (and in his walk of life, if anybody would have it'd be him!). They'll outgrow it.
I wait yet another year. Uncomfortable with the situation but feeling like I've covered my bases. When the boys were nearly 3 and at the prime age for potty-training I finally accepted the fact that there was not a chance in heck that I could potty train them "normally" with the equipment in hand. There was nothing to aim. Their urine dribbled out of their penes and straight down their legs. With their construction, they wouldn't ever be able stand in front of a potty and urinate and when they sat down it's ran all over their thighs. So I held the pot beneath their withdrawn penes, against their legs to begin the process.... Quickly realizing it was just not going to work. Far more disconcerting than the potty-training issue was that the foreskin, which had now totally enveloped their penes such that they looked like uncircumcised boys, had tightened significantly over the head of their penes. The opening was tiny and I could not pull the foreskin back anymore without it straining and then popping over the head and causing the boys MUCH discomfort.
I made our annual appointment with the old urologist and explained the new problematic developments. After rigidly explaining again about the self-sufficiency of the unit, he immediately pulled the foreskin down over each of the boys penes in turn and, on both, the skin ripped and tore... splitting wide open and bleeding in vertical wounds reaching from top to bottom all the way around their penes. The boys were screaming, wailing, bleeding... A LOT! But, the urologist stayed the course saying they'll be fine and I shouldn't be pulling that skin back anyway. Then he gave me a prescription for a steroid cream, and instructions to apply to their penes for two weeks to loosen the foreskin so that, should the boys get an erection, the heads of their penes would be able to break free from the skin without the skin tearing and bleeding as it did here... Otherwise we'd end up in the ER with a "trapped penis" and emergency surgery. Scary thought! Fortunately, erections were not a significant part of our lives so that scenario didn't play itself out. He also agreed that Michael had a little extra skin and an uneven circumcision and then diagnosed "skin bridges". That is, probably after the circumcision, the cut fore skin remaining on the penis shaft had fused itself back to the head of the penis such that there was no ridge between the shaft and head (sorry if TMI but again, I'm going for candid accuracy). He tells me that's this is a common problem occurring in 1 out of 9 men (I'd never heard of it before and I'm curious if any of the 9 men in my extended family had it) and can be corrected any time with a simple office procedure... He went further to share with me that he'd even corrected his own skin bridges right here in his office (Whoa... too much personal information -- as in "I don't want to know anything about your genitalia, Doc!") I was advised to follow-up in a few weeks to check the effectiveness of the steroid cream.
I filled the script and used it according to the Urologists instructions but I was not comfortable at all with the wait and see approach anymore. Or with the doctor's approach in general. Time was passing. Kindergarten -- and mainstreaming -- is right around the corner and I want the boys to be potty trained for that milestone if possible. I feel confident that's an attainable goal since both boys had urinated in the pot when held against their legs. But, in my humble opinion, their apparatus was not working as God intended, so to speak. So, I went back to my trusted Pediatrician and explained. He referred me to a different Pediatric Urologist within the same group. But this man was also a surgeon in the field.
We met with the new doctor and he began immediately to explain the surgical process used to correct the problem. Because my boys have Down syndrome, he said that the likelihood that they would outgrow their fat pad in the groin area was not great. Possible! But not great. "People with Down syndrome are not tall." Though I didn't appreciate his generalizations (all based on a brother-in-law with Down syndrome), I did understand the best and worst case scenarios of not going forward with the surgery. They'd either grow out of it or they wouldn't. Certainly I could take the wait and see approach. Or, the good doctor explained, he could pull back the extra foreskin and place 2 stitches above and one stitch below at the base of the penis shaft to hold the skin back permanently. All done in a half hour as an outpatient in a surgical center. At that point, I had not quite set my mind on surgery and was not convinced that my boys could not outgrow the fat pad given they were already very tall for kids with DS -- in the 50th percentile for height on the "normal" developmental charts. I thanked him and said I would think about how I wanted to proceed.
The Saga Continues: Tune in tomorrow for Part 2: Penoscrotoplasty: The Decision and The Surgery!
Saturday, October 17, 2009
As they say, IT happens.
So, here's a bulleted list of some of the issues on my plate just for this past week:
- Sarge got word over the weekend to report to a brand new command this morning. His long-awaited transfer out of Fort Apache - The Bronx was finally approved. But, with all the stuff going on this week, now's not necessarily a good time for more change in any part of our typical routine. Not that we have a choice! Besides this is really good news.
- The boys were finally well enough to pass their pre-op appointment with the pediatrician. Their congestion is minor enough at this point to go forward. We are cleared for surgery.
- I never received the pre-op phone call so I had no idea when, where or if the surgery was actually going to happen on Tuesday -- as scheduled for weeks now, nor how to prepare for it. Spent the day hunting down the people who are supposed to be in the know at the surgical center, surgeon's office and pre-registration group only to be told by each that it was the other guys' responsibility and to wait to get the call. Which never came. At 9pm the night before the surgery I call the surgeon's emergency on-call number and finally receive a call-back with vague pre-op instructions (the all important "don't eat or drink for 6 hours before surgery" instructions... But I don't know what time the surgery is so it's hard to implement with any accuracy). The on-call surgeon tells me to call the surgical center in the AM to find out the time. You'd think he'd get someone to do this for us, wouldn't you? Too worried to sleep.
- After calling and finding out at 6:30am that the boys' surgeries are scheduled for "11:30 and 12:30... no no 10:30 and 11:30... no no just be here at 9:30 and DON'T GIVE THEM ANYTHING TO EAT OR DRINK FOR 6 HOURS BEFORE SURGERY" (Hmmm, fortunately I didn't... but these instructions would have been at least 3 hours too late if I had.) Sarge and I spent the day fasting with the boys... no opportunity to do otherwise and then we didn't think it fair to eat and/or drink when they couldn't... especially in front of them as we completed their pre-operative rigmarole -- repetitive questions and uninformed anaesthesiologist spouting how he knows "Downs kids". We got through the surgery and, with a brief pain-med delay, were allowed to leave at 3:00pm. Home by 3:30pm. (BTW - the surgical center claims they "left a message with the times but must have had the wrong phone number!" No explanation of why nobody gave me the necessary info when I called them 3 times over the course of the preceding day though.)
- Both Sarge and I noticed odd marks, a rash developing, on Michael's legs immediately after the surgery. I thought maybe it was some sort of scratches because I neglected to clip his nails AGAIN so I didn't mention it. Not sure why Sarge didn't mention it.
- After numerous unsuccessful attempts at reaching my Co-leader to attend in my stead, I gave up and just skipped the monthly Girl Scout [Brownie] Leader meeting in favor of staying home with my post-surgical boys this evening. Our troop goes unrepresented. Oh well!
- PM -- The boys' pain is significant. Tylenol with Codeine is in order. They sleep soundly.... drug-induced sleep. I was mostly up watching and ensuring that they were ok. Maybe I should have taken a swig of that stuff too. (Just kidding)
- Ongoing care of my post-surgical boys, dosing regular pain-meds to address their discomfort. Emergency prep work for the Old Soul's Brownie meeting this afternoon. Too late to cancel. Still can't reach the co-leader.
- The potential but aint-gonna-happen contractor visited us. His estimate for putting on a front porch came in at an impossibly outrageous and entirely untouchable price. That means we can't refinance to lower our bills while the interest rates are low... Without a reasonable estimate, contractor and work date, if I want to refinance, I have to pay to take the porch off the building plans and refile them with the building department in order to close the permit -- a long, costly and drawn out process and a lose-lose situation. My only other option is to get a more reasonable estimate and see if I can get the work done quickly with another contractor. Time and footwork. All me.
- I whipped up a neat Rock Candy Crystals science experiment that counts toward earning a Science Wonder Brownie Try-It badge and, as a reward, I got an hour and 15 minutes reprieve... in the company of 10 girls, a helpful parent and my co-leader, who I finally reached. The Old Soul and her Brownie sisters had fun and were happy! I can't wait to get back home to see how the boys are doing.
- Meanwhile, across town, one of my older sisters took my even older Dad to the MD for follow-up on some neurological tests he's undergone in the past 3 weeks... all meant to eliminate physical reasons for his recent memory loss.
- My father's rapidly failing memory continues to puzzle us all. In the past year we've seen a significant decline. As previously mentioned, in the past 3 weeks I've taken him to about 6 MD appointments for various tests, and my sister's taken him to a couple as well. And though the neurologist didn't find anything "wrong", we got the news from his general physician (I'm the contact on record because he is my GP also... easier than managing 2 separate doctors) saying that Dad's got early signs of emphysema, hyperthyroidism and prostate cancer. More tests and doctor's visits are in order.
- Brian's bandages fell off (as expected) but we had to cut Michael's off... no easy task as Dad held him down so I could cut and peel the bandages off while Brian wailed, holding his crotch thinking we're going to castrate his brother or some such thing. Without the bandages, their genitals look like raw chopped meat, bloody and exposed. The boys are far more uncomfortable now even with the loose diaper barrier and padding. Back to round-the-clock pain-meds... which causes constipation again which they'd just begun to overcome.
- PM -- I noticed Michael's rash has continued to spread and the red spots are more pronounced now. When he began vomiting, I call the Pediatrician. After a couple of failed attempts at accurately describing the "rash" and at giving Michael Benedryl (he kept throwing it up), the Pediatrician recommended the Emergency Room... just to be safe. We did not want to go at that late hour... so I called the emergency on-call number for the Peds Urology surgeon (not our surgeon but one of his colleagues) for a 2nd opinion. I start all over. He didn't think it sounded "life-threatening", vehemently denied it could have anything to do with the anaesthesia, and recommended an over-night Pediatric group 45 minutes away versus the Children's ER at Schneiders Hospital (also 45 minutes away) OR wait until morning and see our Pediatrician which he thinks is still a safe choice. We choose the latter. The Old Soul tells me that she didn't want to bother me in the midst of all the vomiting commotion but her throat is sore AGAIN! As it has been numerous times over the past 2 weeks. Tylenol all around and restless sleep for me and my boys again.... I'm worried.
- No more vomiting but Michael's rash continued to spread and worsen. I called the surgical center and spoke at length with the anaesthesiologist on duty (not ours) to collect all the information I can regarding the meds Michael was given. I'm still thinking it's an allergic reaction. I called the Pediatrician and ask him to squeeze Michael AND the old soul in (to address his rash and her waxing and waning sore throat). We're on for 3:00pm which means I'm pulling her from school early and fore going the boys' first permitted bath in 4 days. It'll wait.
- The Old Soul's school calls. Dad -- who's best described at this point as marginally confused about familial relationships, chronology and time -- shows up at my daughter's school to pick her up at 12:30pm instead of the usual pick-up time of 3:oopm. (Note: This is his 3rd year -- and, sadly, probably his last -- of picking her up from school. This year I have had to be there every day as his back up given his memory issues... but the perceived responsibility gives him something to do daily.) The school administrators finally figure out who he is, why he's there and the principal walks him home after the old soul calmly explains his memory problems to everyone... "tell him to come back later". They just want me to know. This after 6 weeks of drilling him on which door and what time he needs to show up to pick her up from school... truly the last of his responsibilities... and he and the old soul both LOVE this time they get to spend together. I'm bummed. I thought he'd just caught on to the right pick-up door but now he has apparently lost the pick-up time. The principal calls me later to check in, expresses his concern, commends my Old Soul on her mature and calm demeanor in this confusing situation and says he'll instruct the school staff to handle further incidences as I recommend. He says he understands.
- Michael's post-op rash is diagnosed as idiopathic thrombocytopenic purpura -- vein-level red spots all over his body. A big scare for us and for the Pediatrician as this condition is usually indicative of an immune system problem that results in the body's attacking it's own platelets and is often related to leukemia in children with Down syndrome (who have a higher risk than normal). Blood work reveals his platelets are fine -- at healthy levels -- so at this point we believe, hope and pray it was caused by a viral infection. But, we're on a high-alert rash-watch to ensure that nothing more develops. If the spots worsen and/or continue to spread, we've been instructed to call the Pedi immediately. Scary stuff. My worst fears are dangling in front of my very eyes. Olivia is recorded as running a slight fever at the Pedi but her strep test came back negative. Once home, the fever increased rapidly. She's sick but at least it's not strep! Just get in line for some Tylenol.
- PM -- The boys' post-op genitals still look raw and they are still uncomfortable so I continue with the Tylenol which is still causing constipation discomfort. That's the lesser of the evils. They are moaning and groaning and rolling all over the bed all night long because of gas, constipation and pain/discomfort. Brian rolls over and kicks Michael in the groin; Michael screeches "Ow"; Olivia wakes up crying because her broeys woke her. She's hot again. More Tylenol all around. It's 2:30am and she can't fall back to sleep which she proves to me by continuously waking me up from my half-awake/half asleep drifting state to tell me she's still wide awake. "Close your eyes, Olivia!" Truly, I am exhausted. I have that tired, floating brain feeling.
- Initially, things seemed to have settled down after another sleepless night for all. Upon morning diaper changes, I discover that Michael's wound has run afoul. Swollen and purplish-red it looks like he's about to pop the now visible, previously inconspicuous, stitches. I've called the Pediatrician and waited for a call back with instructions on how to proceed. Mikey's sits immobile on the couch, his eyes are red-rimmed. And, though Brian is actively running about, seemingly unscathed and visibly healing, Michael is quiet and reserved after being carried downstairs. He hasn't moved. My poor little guy is beaten up... again. The Pedi thinks that Michael's had a minor internal bleed in his wound... hence the dark red/purple color and swelling. Maybe he bumped it. (Maybe it was Brian's heel to the groin in the middle of the night?) "Ice it and watch it. If he pops the stitches, he'll have to see the surgeon immediately." But, it's the weekend so I know they'd just send me to Schneiders Children's Hospital ER. I don't want to go there but Michael also won't have ANYTHING to do with an ice pack on his sore and swollen genitals. After a little while, it looks as though the swelling went down a bit so I give them their 5 minute baths... separately or I'll never get them out after 5 minutes. The Pedi says to "keep up the prescribed after-care!. But his genitals nor his demeanor look any better after the bath. He's shaking and back to lounging on the couch... tears running slowly down his cheeks. More Tylenol. Guess I'll ask Sarge what he thinks the next move is when he gets home... in about an hour. Oh no! Wait, he's working the Yankee play-0ff game again tonight. He won't be home. I'll have to figure it out by myself... again.
So what's in our not-too-distant future? Quick resolution of Michael's wound condition, hopefully. And, though I was promised by the surgeon that the boys would be able to return to school this Monday after clearing their post-op check-up. I'm told the soonest available post-op check-up appointment is October 26th... 2 weeks away. I MADE them schedule us sooner... on the 21st. (Hopefully, they'll pass!) Still this will have them out of school more than 2 weeks total... twice as long as it should have been... and that's only if they're cleared. I also need to follow up with their school's gym teacher, Physical Therapist, Occupational Therapist and Teachers to discuss what activities they're allowed to participate in and which they are restricted from and how to manage that process/restriction without devastating the boys. I have 3 follow up appointments scheduled for Dad to ascertain the severity of his illnesses. I have the boys' Back-to-School night... which I think we're going to miss, unfortunately. Not to mention the Parent Association Book Fair for which I have volunteered time the day before and that same night at their school. Did I mention I'm the Co-Vice-President of that organization? Sorry, but we're just out of commission for now. The Long Island Buddy Walk for Down Syndrome is Sunday... not sure our team is going to make it. And, finally, the old soul's birthday party needs to be planned and undertaken. Her birthday is next Saturday! That might need to be postponed too!
I've had the boys out of school battling colds the entire week preceding surgery to get them healthy enough to undergo the surgery... Plus they were out all last week... And, I'll have them out almost another week yet. I've barely cleaned or food shopped in 2 weeks! No opportunity to go... Can't take them out. Can't leave them home. All I've done is attend to pseudo-sick kids and my pseudo-sick self... This nagging cough and fleeting sore throat is getting the better of me and my Robitussin, I fear. Even my Mom, who is often my ace-in-the-hole, has come down sick with a bad cold this week! It seems the powers that be have conspired against us in some ways... though not in all. I guess I'm on my own!
Where the silver lining in all of this? Sarge got his transfer. The boys surgery is behind us, healing and potty-training still ahead. The Old Soul doesn't have strep. And, I'm still standing! With a smile (if not a tear in my eye).
Actively pursuing happiness and focusing on the good stuff is the only way I get through times like these. You can see why -- after a week like this -- it's a conscious choice that I make every second of every day... especially lately. Like Dorie in Finding Nemo I repeat over and over again to myself -- and sometimes out loud, "Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming!" Chin up (above the water line). Fins to the left... flapping and flailing at times. Sucking a bit of water here and there... But we are all still afloat! Mostly happily! And weeks like this too shall pass!
Friday, October 16, 2009
Anyway, since I'm blogging this month in honor of Down Syndrome Awareness Month, and since I'm 3 days out of surgery on my boys, I have much to be Thankful for this Thursday. And so, my list will revolve around my beautiful boys [mostly]:
 I'm thankful that my boys came through surgery [on their genitals... yes, both of them... they're identical!] without any major problems. That is, they went under, had the surgery, and woke up without event! THAT'S a big deal to a mom!
 I'm grateful that we were able to intervene on their behalf and correct their "inconspicuous penis" condition so that they may go through life conspicuously... like their peers (LOL). If you want more information with regards to the condition and/or correction, please feel free to email me. Or, follow the blog because I'm likely to talk candidly about this condition and why we chose the course of action we did in the near future.... once we're over the proverbial hump (ha ha ha)... to help other facing the same.
 I'm massively relieved and thankful that the idiopathic thrombocytopenic purpura (red spots) all over Michael's body were not accompanied by low platelet counts... which means it was probably caused by a viral infection and is not indicative of a leukemia-like illness. Children with Down syndrome are at a higher risk of developing childhood leukemia so this was a scare for us AND our pediatrician. But, Michael's platelet counts are more than healthy so we're watching and hoping and praying the purpura (red spots) dissipate quickly without further ado!
 I'm thankful that the boys genitals seem to be healing well and quickly, their pain/discomfort is subsiding and their good humor is holding up! Again, considering the surgery... no small feat!
 I am thankful that I am the mother of these two beautiful little men and their beautiful on the inside and outside big sister... More about the old soul in my next Angels Amongst Us post. I am so incredibly proud of my children in more ways than I can express!!!! They are my angels here on earth.
BTW - In case anyone's wondering, I'm also incredibly grateful that, amidst all this stress, I've still managed to lose a total of 5+ lbs. on the Weight Watchers program. Stress has always done the opposite for me. But, writing it all down seems to be working. Not having time to shovel anything into my mouth is probably not hurting either.
Thursday, October 15, 2009
That's Michael and Brian Taking a Ride on the Wild Side!
So far, there is nothing about a diagnosis of Down syndrome that has precluded my children from participating in any activity we've ever encountered! Not one!
Check out more Special Exposure Wednesdays!
Still I can really only speak to what I've got! Right?
So, does the fact that my twin boys have an extra 21st chromosome make my life more difficult? The answer is, "I don't know!" Or, "I can't really answer that question!" Or, "more difficult than what?" Or, more accurately, "I don't go there". You see, what I have is twins with Down syndrome. And, I can't distinguish between their twin hood and their Down syndrome. I also can't distinguish between Down syndrome and no Down syndrome... because my guys have Down syndrome. And, I also can't distinguish between my twins with Down syndrome and any other kid on the face of the earth with or without Down syndrome. Because that's not what I have. I have my twins who happen to have Down syndrome. This is all I know so I can't say whether it's more or less difficult than having any other children with or without a diagnosis. Does that make sense?
Do I think that I do more for my boys because they have Down syndrome? Well, I do more to help them in the areas where they need help. Yes. I also do more for my old soul because that's me. And, I work hard to make sure she doesn't feel slighted. Truth is, I would and do more for any of my children that need more in any particular area. Down syndrome or not. I work with the old soul in math because she perceives that she is not good in math. (She does well in the subject but has a hard time grasping concepts, she says. And, her perception is our reality so...) And, I drive 60 miles per day so the boys can attend an integrated class in a special school because I thought this particular environment would be the best for them. Better than the mainstreamed environment in our local preschool... And better than the environment in the school where 90% of the students have Down syndrome. MY choice and it cost me nothing but my time to make it! The old soul goes to the community public school around the corner. I believe in the public school system. I considered putting her in a progressive and/or Montessori school program given her Old Soul and extraordinary creativity. If I ever felt that the education environment for any of my children was no longer optimal, we'd choose something different! Time, convenience and cost be damned!
I do whatever I feel I need to do -- whatever I perceive is best -- for my kids. It really has nothing to do with whether they have Down syndrome or not. It has to do with what they need. Does the diagnosis come into play... I guess it does... a bit. But you could swap out Down syndrome for any other diagnosis or none at all and I'd be doing the same thing... whatever I need to do for my individual kids! I don't know how to do any different!
I have never looked over the fence to compare. What's the point of that? Every family is unique and each has it's own challenges and blessings. And, I can tell you, in my life, I have never seen greener grass than what's growing in my yard!
Tuesday, October 13, 2009
In discussing how best to administer anaesthesia for my boys during surgery, the anaesthesiologist said, "... I know about Downs kids..."
Really? You have a child with Down syndrome? And, he/she is EXACTLY like mine so you know all about my kids and how they react to meds, anaesthesia, surgery etc.? I held my tongue, smiled and continued... "... previously, my children did not metabolize the anaesthesia well so blah blah blah..." I think he understood that I didn't want them automatically lumped together with a group of people who may or may not react the same way my children do in a surgical situation. Crazy huh? I held back and did not correct his reference to "Downs kids". I thought it better not to insult the guy before he masked my kids.
My boys are children first. If you're speaking about their genetic condition then they're children with Down syndrome. If you're just talking about them they're Brian and Michael. No other labels are really necessary. And, certainly, putting the term Down syndrome first is like making it the most important part of the definition... of what kind of children they are. "They are Downs kids!" Down syndrome does not define them and referring to them this way is inappropriate. I'm sorry if you think I'm being oversensitive and/or you disagree with this sentiment. If that's so, you probably don't have a child with special needs or a child with Down syndrome. But you should be aware that it hurts when you refer to my children this way. That you see their diagnosis first and the wondrous people they are second. That you define them by their diagnosis. If you know me and care, please try and change the way you refer to people with Down syndrome for me. If you don't know me but you ever have the opportunity to speak in a professional capacity to parents who may have children with Down syndrome -- like the good anaesthesiologist did yesterday -- use people-first language so that you do not insult any other patients, clients, parents or individuals with Down syndrome.
Words can hurt!
When you speak about children with special needs -- whether to the parents or to anyone else -- you should refer to them by their names First. If you don't know their names, speak of them as children FIRST and then -- and only if absolutely necessary and pertinent to the conversation -- add the diagnosis or disability language afterwards.
Monday, October 12, 2009
Sunday, October 11, 2009
Down Syndrome Awareness -- 31 for 21 -- Career Choices for People With Down Syndrome: A Dose of Reality
But, you ask, can my boys really be professional athletes or astronauts if they want to be? Like EVERY ONE else, if they have and/or can develop the talent, skills and knowledge for those professions... the answer is, YES THEY CAN! There are no specific requirements -- intellectual or physical -- that AUTOMATICALLY disqualify my children with Down syndrome from those careers. There are also no specific regulations that prohibit my children with Down syndrome from participating in those careers.
I find the most damaging limitations imposed on people with Down syndrome exist predominantly in the minds of those guiding and/or teaching them... In the minds of those hiring for whatever job position my brave little boys will choose for themselves. That's my perception and the Reality!
In fact, I'm not aiming for any particular career at all for my boys. They will aim themselves through their natural talents and interests. I'm merely clearing the path... Planting seeds, nurturing their talents and weeding out the non-believers that get in their way.
Dr. Kathleen Feeley, a professor at CW Post college; co-founder of the Down Syndrome Advocacy Foundation (DSAF); and a local and renowned advocate for people with Down syndrome, lectures on this very topic. She says to begin now while your children with Down syndrome are young. Seek out through play and activities what their strengths and interests are. Aid them in developing their strengths and interests and then purposefully expose them to the "powers that be" in those areas within your community. I say, visit frequently with your child those places where their areas of interest and talent are practiced. Volunteer with your child for those powers that be. Familiarize the people in charge of the jobs in your child's areas of strength with your beautiful children. Expose them to each other so that your child is a known and comfortable entity to them and vice versa. Then, when the time for employment comes, your child will be thought of as an able candidate for the job -- in the mind of the person doing the hiring -- instead of being automatically pre-judged and disqualified as a dis-abled person.
Our job as parents is to run interference. To clear the path in the minds of those people in power so they come to believe a different reality about our children with Down syndrome. The reality that my children -- our children -- with Down syndrome are capable of amazing things... Not the least of which is doing the job at hand. The job they have skillls and talent for. The job they have been aiming for all their lives....
Isn't this pretty much what we want and should do for all of our children?
No, there is no job that is above or beneath doing. Not for me, my daughter or my boys. This is all about choices. Their choices. I am not saying that being a ball boy, gardener's helper, cashier, office "go-fer", house cleaner, fast food employee, church janitor or any other job choice isn't good enough for my sons, my daughter, myself or for anyone else. No more than CEO, Astronaut or President of the USA is too good for them or any of the rest of us! A former employer of mine used to say, "It's all about Choices!" Career choices are best made when you understand and pursue what you like to do, what you want to do and what you are good at doing. My boys are welcome to choose to sweep floors if that is what they want and love to do. They are also welcome to build the floors if that is where their skills and desires lie. Or, work for the companies that own or rent those floors in whatever capacity they choose. They can even run those companies if that is their passion and their choice!!! I have heard of, seen and/or know people with Down syndrome performing well in each of these career categories/levels. Jason Kingsley, co-author with Mitchell Levitz of "Count Us In", is a highly successful business executive by all measures. And, Joe Steffy, a young man in Kansas City who has DS and Autism, started, built and manages his own very-successful (read: profitable) food production, sales and distribution company. How did they achieve their lofty goals? They had parents who believed in them, who helped clear the path for them. And they had interests and talents that aligned with the careers they chose.
What do you believe your child with Down Syndrome can do?
Believe. Plant the seed. Clear the path. Pave the way... to their success.
Saturday, October 10, 2009
Heck, they can be ditch diggers if they want to be
Or maybe Helicopter Pilots
Or Musicians? That runs in their blood too!
Carpentry, a fix-it man, a Do-It-Yourselfer. There's inate talent and interest in these areas in both boys and on both sides of the family.
Explorers. Park Rangers. Animal wildlife conservationists. Also in their blood... And mine!
Oops, I hear I shouldn't let them grow up to be cowboys! Too lonely or so they say (unless they hook up with Barbie!)
Performers... Dancers! Singers! Absolutely one of their strengths! (Talk about hooking up with Barbie... Helloooo Jessica!)
Photography is a budding interest too! And, they're pretty good at it!
Why do we worry about the career opportunities of our children with Down syndrome any more than we do our children without? Why can't they turn their talents and interests into a career just like everyone else? The Sarg and I agreed that we would be more than pleased if the Old Soul chose any life path that made her happy. If she wants to pull weeds in people's gardens for a living... that's all right with us. (We know someone who does pretty well doing just this LOL!)
I played countless hours with Barbie and Skipper... but never got into Ken. I pretty much sidelined him. I don't know why... I just didn't see him as an option for Barbie. But GI Joe? Now that was a real man! He was rugged and tough and outdoorsy. Yeah, me and my Barbies all went for my brother's GI Joe. Matter of fact, Sarg kind of reminds me of GI Joe in a uniformed, shaved head, 5 o'clock shadow sort of way! LOL
So, the other day when I returned from our school drop-off routine, I noticed my old soul left some of her Barbie dolls out. The hot pink sports coupe was front and center on the kitchen table. And on closer examination, I saw that the old soul had Barbie out gallivanting but NOT with Ken! One of her brother's Woody Cowboys (from Toy Story) was riding shotgun to Barbie. Sherrif Woody looked more than comfortable with Barbie in the driver's seat. (Real men let women drive!) And, it looked to me like she was dressed for a fun and funky day with Woody. Yeah, my old soul is a chip off the old block, all right. My Barbies would have totally gone for the tall and lean Marlboro Man cowboy over today's surfer dude Ken!
Must be genetic!
P.S. The Old Soul had designated Ken as Barbie's Dad... Like I said, Sidelined!
Friday, October 9, 2009
Our primary message to the students is to SEE and treat the individual not the diagnosis.
According to the stereotypical diagnosis of Down syndrome, my children would be mentally retarded. They are not! I have this statement in writing from the New York State Office of Mental Retardation and Developmental Disabilities based on their latest evaluations.
According to the stereotypical diagnosis of Down syndrome, my children would have low muscle tone. They do not. They are in the low range of normal muscle tone... like their mother (LOL).
According to the stereotypical diagnosis of Down syndrome, my children would have heart defects. They do not. Their hearts are perfect! Just like yours and mine despite their extra 21st chromosome.
According to the stereotypical diagnosis of Down syndrome, my children would have vision problems. They do not. They wear no glasses, have no astigmatisms and can see better than me. I've been wearing glasses since I was a college student intending a career working with children with special needs. (Mike wearing pretend glasses)
I could go on but [I hope] you get the picture. They are not a textbook case of Down syndrome. No one is! And, I am not saying that Brian and Michael are completely unaffected by their diagnosis of Down syndrome. They are affected... mildly. But, four and a half years into their beautiful lives, we have found absolutely no limitations for Brian and Michael. Delays? Sure, some! Nothing insurmountable. But ABSOLUTELY NO LIMITS!
Thursday, October 8, 2009
I don't necessarily think this is a good thing. I cannot imagine terminating Brian and Michael because of their Down syndrome... which has had such a mild affect on them, in fact!
I'm not sure what the goal of this in-utero testing is exactly! In theory, I understand it's an attempt to inform expecting mothers so that they can make a choice... To prepare for or terminate what the world considers a less-than-perfect child.
God help us if we're not all perfect! Right? In truth, I have yet to meet a perfect human being!
I get the concept of preparing for a child with special needs though I chose to fore go the pretesting. Pregnancy can be emotional and challenging enough without adding any additional stress! Besides, personally, I think you need to prepare the same for any and every baby... hoping and praying for good health but accepting of whatever child you are gifted -- girl or boy, big or little, early or late, singleton or multiples, healthy or unwell, 46 chromosomes or 47 (Down syndrome). Then, you deal with the curve balls. There's no way to know in advance of their life outside the womb what any baby -- any child -- will specifically require. So, you love and nurture and provide whatever medical and educational attention is necessary for your child at birth and throughout their lives. Isn't that the truth for each and every one of us and for every one of our children... disabled or not? Unless you choose to put your "less-than-perfect" child up for adoption -- a valid choice for some (and please know there are countless parents waiting with baited breath to specifically adopt children with Down syndrome) -- there's no way to know how any of this will actually turn out with or without a prenatal test that is positive for Down syndrome!
But, let's look at the flip side of the choice that prenatal testing gives the expectant mother. Terminating a fetus because it's diagnosed with Down syndrome, to me, is sort of like playing God, or Hitler, or Russian roulette. Sorry, this one's not good enough for us. We'll go ahead and take our chances... pull the trigger again. To be honest, in the realm of potential disabilities, Down syndrome is a breeze and occurs less often than others that can be more challenging and, dare I say, less rewarding. Still, if this notion of trashing this one for the next is ok with you (it's not with me), the world will still never be rid of Down syndrome... though PERHAPS it won't occur in your family. Or, will it? Maybe the next fetus will be diagnosed with the same... who knows?
Unless every fetus conceived is tested in utero -- not likely to happen -- AND, every in-utero diagnosis of Down syndrome results in termination -- also not likely to happen -- thankfully, Down syndrome will always be a part of this world! Because Down syndrome occurs naturally in our world! And, because people like me who not only choose not to test because I wouldn't make a decision to terminate based on results indicating a diagnosis of Down syndrome... But also because I wouldn't terminate if I did receive this diagnosis for a pregnancy -- a baby -- I purposely pursued and wanted!
My daughter's Kindergarten teacher used to say, "You get what you get and you don't get upset!" Good advice. Though my daughter loves the color green, there's no guarantee when the chatchkies are being handed out that she's going to get the green one. She has to take and be happy with the chatchke she gets. Same goes for babies.
Yes, Trisomy 21/Down syndrome occurs naturally throughout the world in approximately 1 in 800 births (medical termination is not natural). The 21st chromosome accidentally triplicates itself, instead of only duplicating itself, and then the replication of this triplicated chromosome repeats over and over again in each cell as the fetus develops. Occasionally, the "mistake" naturally reverses itself in the process of fetal development and the 3rd 21st chromosome is accidentally not copied such that all cells going forward from that point have only 2 21st chromosomes which results in Mosaic Down syndrome. Still, thus far, medical science has not been able to identify when the triplication is going to occur, keep it from happening, nor correct it once it has happened. Is it possible that some day medical technology will find a way to do these things? Sure, any thing's possible... But, personally, I hope it doesn't come to that. I think the world is a better place because there are people with Down syndrome in it! I KNOW my life -- and this world -- is definitely better for the presence of Brian and Michael... just the way they are!