The good news is that Tommy quickly got off the pain meds, slept through the night from the very first evening and in general has done really well. The bad news is that we are on house arrest due to a massive case of the hives. After chit chattin' with Dr. Niparko for the most of the weekend, (and lots of email pix), it's been determined that he is experiencing an allergic reaction to the antibiotics. I was skeptical at first, but the worse it has gotten and the more widespread, the better I feel. In the beginning it was near his implanted ear, but now he's covered to his knees. He looks absolutely terrible, but isn't itchy - maybe a little bitchy, but not itchy. Thankfully, he's been oblivious to it for the most part. We've been ordered to stay out of the sun and heat...yeah. Just as the weather has gotten nice...no pool was bummer enough.
Fingers crossed that the hives get out of his system soon.
Monday, June 8, 2009
Thursday, June 4, 2009
Wearing a jock strap on your head is way cool
Here's a few pix of Tommy at home sorting through all his loot. We chose to take the pictures while he was comfortable - thanks to tyelonol with codeine.All in all, a very good day. The surgery was approximately 1 1/2 hours, Dr. Niparko and his team got "full insertion" of the implant, Tommy woke up really easily and we were home by noon. The surgery got moved up a few hours which really helped on all fronts. We were at Hopkins by 5:30 am and he enjoyed hanging in the pre-op room filled with toys. He was familiar with the scene from his ear tubes surgery. We were anticipating a huge fight with the big ol' bandage, but he's taking it completely in stride. Dr. Niparko told us to prepare for searing pain and that appears to have been right on. Thankfully, by 11:30 p.m. he was out for the night and has been codeine free since then. It goes without saying, but if you ever need surgery for anything, Hopkins truly is an amazing place. Everyone from the checkin staff, pharmacy, doctors and nurses couldn't have been nicer. The place runs like a finely tuned machine and you can actually feel that you're surrounded by the smartest group of docs around. Sometimes during all the office visits at the Caroline Street Outpatient Center it can feel a bit institutional, but the surgery center is incredibly warm and I swear there's a palpable energy in the pre-op room. Or, maybe I've watched too many episodes of Grey's - surgeons in pre-game excitement mode.
We're really grateful for all of our friends, family (especially Nana who's been here since Tuesday), and all the supportive messages from near and far.
Grazie
Monday, June 1, 2009
ISO Nerves Of Steel
I am perfectly willing to acknowledge my long list of shortcomings. Going through the candidacy process is bringing them front and center for all to see.
Yes, I'm the mom who gives the Principal-pull/lift by the elbow and run out of doctor's offices, (stores, Starbuck's, and restaurants for that matter) when the boys are spinning out of control. Quite literally spinning - as of late their game in public they like to play most often is Planets...as in spinning planets with colliding orbits. Elderly, store displays, or myself (the Sun) should take cover.
Yes, I'm the mom who loses hearing aids only to find them in the bottom of my not-so-tidy purse after calling Jennny and telling her they're "officially" lost. We've been playing this game since freshmen year in college when I'd lose my super fashionable gold hoops on a daily basis.
Yes, I'm the mom that makes lists on my blackberry of all the appointments, follow-ups, fax numbers, therapist info etc only to have my blackberry wash up on the beach in a pile of sand. Somehow, it managed to work - aka divine intervention.
Yes, I'm the mom who has to leave the playground/or go commando at Hopkins because her son has chosen to regress and needs a new set of underwear...See above for lift-by-the-elbow maneuver.
Yes, I'm the mom who screams at the top of her lungs trying to stop the Greco Roman style wrestling that goes on 24/7 to avoid "head trauma."
Yes, I'm the mom who argues with medical office staff who are clearly clueless. This only happens after my kill-them-with-kindess approach fails.
Yes, I'm the mom who occasionally faxes paperwork to the doctor's office on the blank side.
The list could go on and on. I'd like to think I'm also the mom who stops and repeats myself a million times a day so he can hear and understand his world. I'd also like to think I'm the mom who gives hugs, kisses and cuddles while reading endless piles of books. Finally, I'd like to think I'm his mom for a reason. I may be overwrought and impatient, but my internet OCD has uncovered both incredible friends and resources along the way.
The bottom line is that both of our boys require more patience than I was given, but I'm doing the best I can. My elevated blood pressure is a given, but try to cherish the moments in between the chaos.
As we pack for Hopkins, I am reminded that many families we see there have life threatening surgeries and limited outcomes ahead of them. We are so lucky and blessed to have our strong, willful, affectionate, pisser of a little man. We hope and pray that although the road ahead is predicted to be bumpy, Tommy's CI will be another blessing for our family.
It's apparent that my nerves are clearly frayed as we anxiously await surgery on Wednesday. Many unanswered questions remain and still another audiological test for tomorrow. By tomorrow evening as we settle into our hotel room in Baltimore I hope we'll be feeling a lot more reassured than today. As of this moment, we haven't officially picked out his manufacturer, colors for all his gear (which is more of a big deal than it sounds), don't know anything regarding post-op, let alone activation questions. Activation takes place on July 7th with many appointments after that.
We've been preparing Tommy with coloring books, his own koala bear with a cochlear implant and encouraged that he's so excited to "get a CI." The hard part is that we can't fully explain that he won't actually get the CI for an entire month. All he's going to know is that he's wearing a hellish bandage and can't go swimming for awhile. (still yet another question).
Hope to post some post surgery pix later in the week. If you're the praying kind- feel free to throw some Tommy's way.
Yes, I'm the mom who gives the Principal-pull/lift by the elbow and run out of doctor's offices, (stores, Starbuck's, and restaurants for that matter) when the boys are spinning out of control. Quite literally spinning - as of late their game in public they like to play most often is Planets...as in spinning planets with colliding orbits. Elderly, store displays, or myself (the Sun) should take cover.
Yes, I'm the mom who loses hearing aids only to find them in the bottom of my not-so-tidy purse after calling Jennny and telling her they're "officially" lost. We've been playing this game since freshmen year in college when I'd lose my super fashionable gold hoops on a daily basis.
Yes, I'm the mom that makes lists on my blackberry of all the appointments, follow-ups, fax numbers, therapist info etc only to have my blackberry wash up on the beach in a pile of sand. Somehow, it managed to work - aka divine intervention.
Yes, I'm the mom who has to leave the playground/or go commando at Hopkins because her son has chosen to regress and needs a new set of underwear...See above for lift-by-the-elbow maneuver.
Yes, I'm the mom who screams at the top of her lungs trying to stop the Greco Roman style wrestling that goes on 24/7 to avoid "head trauma."
Yes, I'm the mom who argues with medical office staff who are clearly clueless. This only happens after my kill-them-with-kindess approach fails.
Yes, I'm the mom who occasionally faxes paperwork to the doctor's office on the blank side.
The list could go on and on. I'd like to think I'm also the mom who stops and repeats myself a million times a day so he can hear and understand his world. I'd also like to think I'm the mom who gives hugs, kisses and cuddles while reading endless piles of books. Finally, I'd like to think I'm his mom for a reason. I may be overwrought and impatient, but my internet OCD has uncovered both incredible friends and resources along the way.
The bottom line is that both of our boys require more patience than I was given, but I'm doing the best I can. My elevated blood pressure is a given, but try to cherish the moments in between the chaos.
As we pack for Hopkins, I am reminded that many families we see there have life threatening surgeries and limited outcomes ahead of them. We are so lucky and blessed to have our strong, willful, affectionate, pisser of a little man. We hope and pray that although the road ahead is predicted to be bumpy, Tommy's CI will be another blessing for our family.
It's apparent that my nerves are clearly frayed as we anxiously await surgery on Wednesday. Many unanswered questions remain and still another audiological test for tomorrow. By tomorrow evening as we settle into our hotel room in Baltimore I hope we'll be feeling a lot more reassured than today. As of this moment, we haven't officially picked out his manufacturer, colors for all his gear (which is more of a big deal than it sounds), don't know anything regarding post-op, let alone activation questions. Activation takes place on July 7th with many appointments after that.
We've been preparing Tommy with coloring books, his own koala bear with a cochlear implant and encouraged that he's so excited to "get a CI." The hard part is that we can't fully explain that he won't actually get the CI for an entire month. All he's going to know is that he's wearing a hellish bandage and can't go swimming for awhile. (still yet another question).
Hope to post some post surgery pix later in the week. If you're the praying kind- feel free to throw some Tommy's way.
Thursday, May 14, 2009
Maybe you don't know who you're talking to...
We just returned from our psychological evaluation at Hopkins where we were told no less than 10 times in 10 different ways that our child should be at River School next year. Yes, River School is an amazing place, but frankly the hard sell was off- putting and unwanted. We owe both my sanity (supportive staff) and insanity (hellish commute) to River. Tommy has benefited from parent/infant, speech with Meredith Ouelette, audiological services from Jen Mertes, generous scholarship support from Nancy Mellon, and amazing teachers along the way. If we weren't talking about being in the car next year for 3 1/2 hours per day, and/or Tommy wasn't significantly behind in language skills we would be there next year. The bottom line is that we want to capture some of his areas of weakness now before the academic pressures of kindergarten set in. Oh, and the DHOH preschool is five minutes from our house. We've had a rocky road with County services, but last week at our IEP meeting we couldn't have asked for anything more. I have great confidence in Tommy's "staff" and whether or not we believe in every detail of the model of his new preschool is almost a mute point...pun intended. We know our kid, I know the system, We know what we're doing....telling us to "Expect the best, but prepare for the worst" is not helpful. I'm only happy that we're at a place where we're comfortable with our decision because if we weren't- we would have left Baltimore in tears.
We also have another young son with a schedule and a life of his own that we need to support. It's easy to say from the comfort of a medical office what is best for a child, but put the mother's shoes on for A DAY.
We also have another young son with a schedule and a life of his own that we need to support. It's easy to say from the comfort of a medical office what is best for a child, but put the mother's shoes on for A DAY.
June 3rd sounds lovely
We were firmly wed to the 18th, but received a call that June 3rd would be our date instead. In the grand scheme of things not a big deal, but in the immediate term of getting all our ducks (ie. appointments) in a row - just a little stressful.
On a side note, Tommy is happy he's getting a cochlear implant like his friend Christian. I can actually picture the two of them as teenage boys picking up chicks together...their CI's will be their calling card. They look like little linebackers now and hope they will grow up together as "buds."
On a side note, Tommy is happy he's getting a cochlear implant like his friend Christian. I can actually picture the two of them as teenage boys picking up chicks together...their CI's will be their calling card. They look like little linebackers now and hope they will grow up together as "buds."
Tuesday, May 5, 2009
June 18th...
Well, one day makes a difference. We received the call - June 18th is surgery day. We need to report to the hospital by 6:45 a.m.. Tommy loved hanging out at the Admiral Fell in Fells Point the night before his CT scan so, we'll just do it again. What can I say, he has good taste in pizza...he was a huge fan of BOP. If you're somewhat of a local you may remember some foggy late night dining there.
I assumed I'd have a great sense of relief, but instead I just feel like I need a Xanax and a Zantac. Hopefully zoning out to some reality TV will do the trick instead.
I assumed I'd have a great sense of relief, but instead I just feel like I need a Xanax and a Zantac. Hopefully zoning out to some reality TV will do the trick instead.
Sunday, May 3, 2009
waiting...and more waiting
When I first had the idea of doing a blog for Tommy I assumed the information would be fast and furious as we quickly marched toward surgery. Ummm, yeah - not quite the case. After two more appointments at Hopkins that included a mini-quarantine for "suspicious travel to Mexico" we are no closer to surgery than we were a month ago. I do well with a plan, not so well with the entire Summer in flux. I was hoping to have the surgery in time for Tommy to participate in ESY (summer school of sorts) at his new DHOH preschool to help ease the transition before activation and the start of the school year. As each day goes by without a phone call I'm realizing that my plan quite probably is a pipe dream. My biggest fear is activation close to the start of school. The stress of the new sounds and adjusting to natural hearing with electrical hearing is the big mystery....How well will he adjust? Will he reject the cochlear implant? Will he be terrified? Watching him struggle with the simplest of tasks it's clear that he NEEDS a CI and am grateful that the "deaf enough" card has been granted. Let's get on with the show already....
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