My first 5K

As I mentioned many blog posts ago, I started running. I started using a program called Couch 2 5K. It's free, you can find it on the internet and it basically takes you through a 9 week program, 6 of which is interval training and 3 of which is running for 20 minutes or more, until you can run a 5K or 3.1 miles. I started the program in August. I finished in October. I finished in 9 1/2 weeks. I am really proud of that, especially because I finished in the midst of Owen having VEPTR surgery and the staph infection. I ran at home, I ran in Philly. (Thank you UPenn for having that lovely lit up, security manned park near the hospital!)

I continued to run 3x weekly and this past weekend on November 20, 2011, I ran my first 5K. I ran Mamaroneck's 43rd Annual Turkey Trot. Whoo hoo!

I wasn't alone. Nick ran with me, as did my sister Alyson, brother-in-law Brian and Brian's sister and our friend, Kristen.

Gavin and his friend Madison ran the 1 mile kid's run.

It was quite exciting lining up to begin. We started out near the back. There were a ton of people. Nick and I stuck together. We ran the whole thing and our official time was 34:21. Unofficially (i.e. by my iphone) we ran it faster (33 min), but I think because we were in the back of the crowd in the beginning, we didn't pass the clock until we were a minute in. Next time, we will start closer to the front.

It was fun and it was hard and I want to do it again. I started out too fast and had to really concentrate on pacing myself. It's easy to get caught up in what everyone else is doing. When a family began singing behind us between miles 2-3, I wanted to trip them. When we approached the small but long uphill at about 2.8 miles, I wanted to lay on the grass and sleep. When we rounded to the finish with about 50 meters left, I felt happy and relieved and proud.


I am going to start training for a 10K this week. I am going to do the Bridge to 10K program. I am taking my running inside for the winter, with the exception of nice days. I am really glad I like running.

I am hoping to be able to run a 10K by early spring.

Here are some pics of our turkey trot!

An update on the last few weeks...

As most of you know, Owen had his right VEPTR placed on October 4, 2011. It was a big and tough surgery and Dr. Campbell placed one long rib to spine rod with two fairly large outriggers that would keep Owen's right ribs from "parasoling" or shutting like a shutter. We remained in the hospital for one week and were thrilled to get home. We love CHOP, and we have some amazing PICU nurses there, however, we were anxious to get home.

We were sent home knowing that Dr. Campbell had a hard time closing Owen this time. The lumps in his back were quite noticeable and Dr. C said that he only got about a quarter inch of skin flap. A lot more skin flap is usually achieved and usually hoped for. But he was able to get it closed.

Nick and I had to make sure we changed the dressing this time, as opposed to June when we were allowed to remove it when we got home. We changed his dressing every 48 hours. The first week home was fine. We had a wound care checkup on October 17 and everything looked good. Then Wednesday, October 19, Owen got a fever. It was only 101.3 and the directives were that if he was over 102, come back to Philly. That night his fever only reached 101.7. I emailed the doc in the morning and since his wound was not actively leaking, we could stay home and wait it out. Maybe he just had a cold.

On Friday, October 21, I got up and got ready for work. I changed Owen's dressing and it was definitely actively leaking and I could see the metal in his back. I quickly called Nick and began to pack to head to Philadelphia.

We arrived in Philly and were admitted. Owen's wound was cultured and he tested positive for Staph gram negative, which is a very distant cousin to MRSA and one of those pesky bugs that likes to stick around. We scheduled surgery for Saturday October 22 for Dr. Campbell to take out the lower outcropping since it was coming through the skin and had contact with the staph.

On October 22, Dr. C did just that. He removed the lower outcropping, placed a wound vac in Owen's back and irrigated and debrided the wound. Surgery was again scheduled for later in the week to remove the wound vac, irrigate and debride the wound again and hopefully close him up. In the interim, Owen required Vancomycin and Rifampin- heavy duty antibiotics to fight the staph. He had to have a PICC line placed to deliver these antibiotics since they reek havoc on your blood vessels.

On Monday October 24, Owen went in for the PICC line under general anesthesia.

On Tuesday October 25, Owen went back in the OR to remove the wound vac and clean out the wound again. Dr. C felt the wound area looked great. He was able to get him partially closed, but we would be going home with an open wound. And by open wound, I mean that I can see metal and muscle in my sons back.

On Friday October 28, we were discharged with the PICC line and with the open wound. We had to learn how to flush the PICC with heparin two times daily and we had to do nightly dressing changes with betadyne and sterile dressings. And we did and we still do.

On Friday November 4, we had our first wound check-up with Dr. C. I removed Owen's dressing, thinking we had been doing such a great job. It looked a bit better to me and there was lots of pink skin that was granulating. But he took one look and said "oh no". Apparently, the skin is hardening around the edges and is trying to heal open. It's not healing from the bottom up as we would have hoped. In addition, the upper outcropping is poking too far out and threatening the integrity of one of the portions of the wound that is closed. Now, as of last night, the wound is leaking again.

Surgery is scheduled for tomorrow. We will go in, the upper outcropping will be removed. I am not sure if a wound vac will be placed and Dr. C will attempt to get this little boy closed.

It's a bit of a nightmare. And the craziest part is that these pieces have to go back in. Without the outcroppings, the ribs will shut on his lung. So Dr. C is going to see if he can have custom pieces made for Owen that will fit him. The insane part of this is that, this could happen every single time. No one is safe from these infections. We did everything humanly possible to prevent infection before the VEPTR was placed. CHP baths for Owen, Nick and I washed solely with Dial anti-bacterial body wash. Everything he or we touched was cleaned with clorox wipes. We really really did our best.

I am praying and hoping and wishing on a star that this is the last surgery. I will keep you posted!

He won't remember...but he knows.

Over and over people say the same thing to me, "Owen won't remember the surgeries" or "It's great that you are getting this over with now, when he won't remember" or "Thank God, they don't remember". And I agree, wholeheartedly. I am thrilled that he won't remember what he has been through in the last 1 1/2 years of his life. I would not want him to remember. However, he certainly knows now. How it will affect or not affect him, none of us are privy to. I don't know in my own child and you don't know in yours because you can't say for sure how they would have been had these things not happened. We do know, or for those of you who have asked your children whether or not they remember, that he won't be able to recall this specific memory.

But it has to be affecting him in some way or another.

Owen is forming, growing, exploring, expanding his horizons. We teach our kids how to speak by showing them things and repeating things, we teach them how to love by telling them, hugging them, kissing them. We give them experiences and if they love them, we do it again. Holidays come once a year. They don't remember it at Owen's age, but soon enough, as it draws near, they know and they look forward to it. Kids become conditioned. Part of Owen's experiences are hospitals, surgery, and pain. And he does remember now. He is conditioned. Every time someone with scrubs walks in he hides his eyes, begins to cry, or pretends to be asleep. Soon enough, he may know that other things indicate that he is about to experience something painful- seeing a landmark on our drive to Philly, checking into the Ronald McDonald House, entering the parking garage at CHOP.

He won't remember his second VEPTR surgery on 10-4-11. But he may remember that these other things indicate pain and suffering. He may recall he has been here before and it's not a happy place. He may know that it's going to hurt.

I worry that during this time of his life when he is experiencing so many new things, that his ability to cope or how he handles painful situations are being affected. Maybe he will be better suited to deal with unpleasant things in life because he has had all this practice. Or maybe not. Maybe he will be more fearful of things or worry more than my other children. I don't know. I do know as I watch him go through this, as he refuses to look at Nick or I or when he closes his eyes every time someone comes in the room as some sort of avoidance technique, that this is going to take it's toll.

But, at least he won't remember.

An new orthopedist and some new hope....

Our orthopedist has been wonderful. She has worked very very hard on Owen's clubfoot. She is the doctor that, when he wasn't gaining weight, sent us to check out his lungs because if a baby is trying too hard to breathe and expending that energy and burning those calories, you may have a problem. And he did, hence the VEPTR surgeries. She also casted Owen 3 times weekly for his clubfoot and she would see us quickly if she knew that we had other places to be, which is priceless on a busy appointment day. I am glad we started this journey with her.

But, as I have been writing lately, I am frustrated. I am especially frustrated because I can see that I have a child who already wants to walk and stand and we haven't gotten very far with his legs and feet. This is not for lack of trying, but Owen's body is tough. It's rigid. It likes to curl up and tries at every turn to get back to curved. And I was and have been a proponent of conservative therapy. However, there comes a time where you have to make a judgment call. Do I continue to treat conservatively and maybe get no where and push potential surgeries off? Will it finally work and I will be thrilled we kept at it? Do I opt for surgery so that he has a shot at walking at an early age? Do I take the chance, not operate for a while and while he get stiffer, run the risk of losing some functionality of both his knees and feet? Do we do surgery that basically guarantees that he will have arthritis problems and pain later in life? What do I do????

Our orthopedist had to go on medical leave for a while. In the interim, she said we should see another orthopedist and I did. It's the ortho that I wanted to see from the beginning who specializes in Arthrogryposis. However, he is the ortho that does not take our insurance and I knew when Owen was 6 days old and I called, that I would be racking up bills in the hundreds of thousands for orthopedic care only. To give you an idea- Owen's last VEPTR bill was for $175,000.00. That does not include the doctors fees. So, I knew I couldn't swing it. However, now he will accept what our insurance pays so long as we have met our deductible. We meet our deductible around the end of January now.

So we see him yesterday. He walks in and we go over all of O's issues. He tells me about how many children he sees with Arthrogryposis. We have a laugh over the fact that I am a medical malpractice attorney (he asked what I do and I don't keep it from them ever). Then he touches Owens legs. Without a shadow of doubt, he looked at me and said, "you know one of the biggest hurdles with these kids is whether or not they have good muscle function." I said I knew that and that I had not had the opportunity to have Owen's muscle biopsied because the places he has been open surgically (the spine and the hernias and the back and ribs) don't have good active muscles and the biopsy would be wasteful. Then he said, "I can feel his leg muscles and he has great muscle quality. He could be walking. We need to get on that now." Easy as that, I was elated. And I knew, we would be seeing him again.

I am not really a dreamer. I would like to think that I am realistic about most things and especially Owen. I have never doubted that he may walk but I have also attempted to cautiously warn those that are too hopeful that there is a real possibility that he won't and that we most likely will have wheelchairs and ramps and the whole nine yards. That all still could be true. But to hear someone who does this all the time, who sees these kids and operates on them and treats them, say this makes me more of a believer. No one has been this optimistic, with the exception of his therapists who can see (as well as us) that he wants to stand and walk and take steps. For someone to speak in absolutes is pretty exciting.

So a new part of this roller coaster ride begins. We do the VEPTR next week and God willing, we don't have complications and we are home within a reasonable period of time. Then we see this doctor again 6 weeks later and come up with a plan for his knees and feet. He can do one leg at a time, but the foot and knee at the same time, which cuts down on the amount of surgery needed and it means Owen won't have to go through 4 separate castings (2 feet, 2 knees). It means less anesthesia, less hospital time, less chaos.

It means that one day, hopefully in the next 6-8-10 months, I am going to see Owen walk down the hallway (assisted or unassisted) and go looking for whatever trouble Caleb has found and watch him participate in wrecking my house, instead of being a bystander. And I can't wait.

Running? Who me?

I have been somewhat quiet about my diet and exercise as of late- which is usually an indication that I am doing well and sticking to it. I started exercising March 1, 2011. Initially, Nick and I had an exercise challenge. We competed on a weekly basis to see who exercised more. If I won, I got a back massage. If he won, he got a back scratch. We both love these things and usually dislike giving them, so this was motivation. Needless to say, we kept up the challenge from March until June. I won more than he did. I don't care what he tells you. I did.

At that time, I realized that I couldn't concentrate on dieting and exercise given everything we have going on, so I picked exercise and I kept at it, 5-6 times weekly. The only time I got lazy was the two weeks following Owen's first VEPTR surgery. I just was emotionally spent and exhausted and at that point, I had lost 10 lbs or so and gained 4 back in Philadelphia. Oh my Lord, there is a place that conveniently delivers to the hospital called the Greek Lady and it has vegetarian gyros made with veggies AND french fries. Odd, but delicious, I assure you. Well 8 of these later, I packed on 4 lbs. I won't be repeating this mistake again in October.

I picked it back up in July,(exercise- not the gyro)and became really serious about my diet too. Unlike other times, I was not thinking of it as a diet but more as a life style change. I went to BBQ's and ate. I had a piece of birthday cake. For once, I did not let those things ruin a perfectly good eating day otherwise. I credit this to a website called My Fitness Pal (MFP for short). At the risk of sounding like a commercial for MFP, it is amazing. It's free and has a facebook type set up where I log my food, exercise and progress every day. It really helps to see the numbers. It helps to see that if I exercised hard, I can eat that cake and I don't have to worry about it another minute. For anyone who wants to lose, check it out. You have friends and there are chat rooms and people make up challenges for the month and you can join them. It's really so helpful to have a place to put it all down. People who don't "diet" don't realize, it's kind of like an obsession. Every morsel, every calorie, the adding, the subtracting, the meal planning etc... It's time consuming.

But back to my exercising. When I started, I walked and walked and walked. Then I started biking. I walked and biked. I biked all over my neighborhood all summer with Nick and without. On MFP, I joined the July Move Your A$$ Challenge and made a pledge that I would walk 65 miles in July. I ended up logging 83 by the end of July and I was fascinated and hooked on paying attention to how much I was moving. I walked on lunch. I walked in the morning. I biked in the evenings. Nick and I took long bike rides on Sundays.

Then came August (as it generally does) and it was time for our family reunion. My whole family is running. My cousins Christine, Katie and Kathryn are running. They are long and lean and they are running. And I feel inspired. I am not built like them and they are all thin, but I started thinking that I had been walking and biking a ton and maybe it was time for a challenge. I joined the August Move Your A$$ Challenge on MFP and I pledged 85 miles for August and about halfway through the month, started C25K. C25K is the "Couch to 5K" program. Each week you walk/run intervals starting with 60 seconds at a time and working your way up to 30 minutes of running which if you run fast, is a 5K. By the end of August I surpassed my 85 mile goal and ended up logging a total of 93 miles.

And here we are in September. I pledged 100 miles for the September challenge. As of today I am at 83.75 miles and have no doubt I will surpass 100. If this post is up on my blog and you are reading it then this morning I just finished week 5 of the c25k program. (I wrote this post Monday and it should be Friday if I was able to complete week 5). I waited until Friday to post this because as of today, I was able to run 20 minutes straight which is 1.7 miles on my route. Based on my timing as of late, that means I am running about an 11 minute mile. For someone who never ran and who just started, I am pretty proud of that. I am so proud of myself and how hard I have worked that I signed up for my first 5K which is November 20, 2011- the 43rd Annual Mamaroneck Turkey Trot. I have 3 more weeks of the c25k program to finish where I will take that 20 minute run and increase it by 5 minutes each week until I am running 30 minutes a day/3 times per week. Then I have about 4 weeks to work on my speed. I also have left myself enough time for Owen to get his VEPTR and for me to take it a little easier that week if need be, although, I have mapped out a 3 mile run for Philadelphia nearby the hospital.

I have no goals for my first 5K other than to finish it running. I want to prove to myself that I can do it. I have been working so hard and actually enjoying the feeling of being able to do this. Today (Friday- as I am editing this now) I felt amazing to finish my 20 minutes. I looked like a complete idiot with a smile plastered on my face this morning during my cool down walk, as I gasped for breath. But I don't care.

In addition to the biking, walking and running, I take a yoga class once a week and have joined a gym that I go to twice a week for weight training and light cardio on my "rest" days.

I have lost 27 lbs and 5 inches off my hips, 4 off my waist, 3 off each arm and calf. I am down one pant size.

I have a long way to go, but I wanted to share. I am pretty excited.

Frustrated.

I am frustrated. I am one and half years into this journey with Owen and I realized with a good amount of sadness this week, that we are barely crossed anything off the list of what needs to be done for Owen and for those of you who know me well, you know I like to cross things off the list.

Some of you may wonder how I could have a list of things to be done to Owen. It may seem detached or cold even. But for those of you who have children with special needs that have what seems like an unending amount of surgeries or body parts that need fixing, I would venture to guess you understand completely. I have to be detached or even a little cold when it comes to thinking about these things. Otherwise, every time I scheduled our pre-surgical appointments and geared up for another round of hospital stays, sleepless nights, unrest and family upheaval, I would break down and cry or worse. And worse is not acceptable.

So I have a running list. A list of future surgeries, a list of body parts and potential treatments, a list of questions to ask about body parts and future treatments, ideas for therapies. And the list goes on...so to speak.

Currently my list also reflects my frustration and sadness and a little bit of "why me" or "why Owen". It looks a little like this:

Right sided VEPTR 10-4 (Oh why couldn't it just be over??? Why weren't we able to complete it the first time around so I could cross this off the list?)

Which translates to: Oh my God. We have to spend another week in Philly, watching our baby go through that AGAIN. Is there no mercy here? Can I handle this?

Left foot surgery- no date as of yet (and how can we schedule it with the VEPTR surgery looming. And why didn't we fix it when he was 4 months old like the other babies? And when are we ever going to fix it with every 3 month VEPTR expansions?)

Which also makes me wonder- is there anyway to do two surgeries at once? When are we going to have time for all the other parts when we have to expand his ribs EVERY 3 MONTHS for the next 2-3 years????

Right foot- club foot correction- who knows when? (the poor child has had about 4 rounds of corrections with casts 2-3 times weekly. When will this end? When? Why doesn't his foot stay? How much longer can we do this? The answer has to be for as long as it takes.

Knees- bilateral - no date either (because of the VEPTR surgery and the expansions, so again, when can we do this? How do we fit it in?

And the list goes on. So in 18 months, 6 surgeries with a huge 7th on the horizon and as you can see numerous surgeries to follow, I am frustrated.

I am upset we didn't fix other things earlier. I feel like we were so concentrated on the club foot (and why I wonder?) and now his left foot is going to be a very tough surgery. I am worried that if we don't fix his left foot soon, he may not be able to weight bear on it and if he can't do that, he can't stand/walk. And if we missed that boat because of timing and not fixing it earlier I will be crushed. So I have all this panic sitting in my stomach lately and I have no control. His lung/rib cage needs to be fixed first. And you can't operate again for 3 months because his lungs need a chance to fully recover from the surgery and then as I have mentioned, it's time for an expansion. And does the expansion trump the foot? After the expansion he will need to heal and after the foot he will need to heal. I feel like with the exception of healing time, the next year(s) will be spent in the hospital.

Frustrated.

AMC Mini Meet-Up 8-20-11

How lucky are we? On August 20, 2011, we had the amazing experience of meeting 7 (yes, 7!) different families/people with Arthrogryposis for a barbeque. And I have to tell you, it was inspiring and I cannot wait to do it again! In attendence were Valerie Pepe (Staten Island), Laura Kraus-Van Cott and her husband Kenny and their daughters Kaeli and Jenna (Staten Island), Alanna Owens MacDonald and her husband Patrick MacDonald and their daughter Mary (Massachusetts), Donna Gackenheimer and her fiance Dan (Long Island), Melissa Chang and her son Henry and daughter Elizabeth (Connecticut), Lisa Loughran and her son Roger (Red Hook, NY) and Serena McMurty and her daughter Tiffany (Long Island). Also in attendance were my family- Mom, Dad, Maddy, Al, Bri, Carla and Andrew and the lovely Madison Texidor. (Al and Bri weren't invited, but crashed anyway. The nerve. Just kidding of course).

Here is a group shot:



We had a beautiful day. The prediction was rain, but there wasn't a cloud in the sky. We were able to get a picnic area at Willson's Woods Park about 1 mile from our home.



Owen and Caleb were entertained by Madison T. and Gavin while I set up:



At 1pm everyone started arriving. Initially, I was worried. Would having this one thing in common be enough to unify the group? Would we immediately have an natural understanding for all we have been through or would it be uncomfortable talking about limbs, surgery, braces, etc.? I wasn't sure what to expect. And I wasn't sure how Gavin was going to feel seeing crutches, wheelchairs and meeting kids like Owen.

I soon came to learn that I worried for nothing. It was great. We got to meet such special people. The bond you feel with people who have gone through or are going through the same things that you have been through was natural and immediate. We talked and laughed, compared notes and experiences, ate, drank and were merry. I got to meet two adults with AMC, Donna and Valerie and I have to say that seeing that nothing stands in their way was amazing. Nothing gets in their way and nothing will get in Owen's either. They can go, do and participate in anything they want to. What great examples of two people who live with AMC every day and live full and happy lives. It made me personally feel like Owen will do whatever it is his heart desires.



Mary has the cutest wheelchair I ever did see. Hot pink. And she can move the wheels. I was so impressed. Roger just started sitting up. Serena walks wonderfully and hit it off with my sister Maddy right away. Elizabeth is a month older than the twins and she was waving to me and saying bye bye. Jenna has a VEPTR like Owen and I watched her play and communicate with her sister. I feel blessed to have gotten to meet everyone.


It was an awesome day. When we all said good bye, two things became clear to me. First, that we would be doing this again, if not a yearly reunion, than something more frequent. And second, I just met the new additions to our family, our AMC family.

The VEPTRS are making me lazy!

Ever since Owen's surgery, I have had an "appointment" break, which has felt like nothing short of a vacation. What have I done with this break you may ask yourself? Well I have worked of course. This should all show you how sick and twisted I am. Mondays at work feel like a vacation compared to 4 appointments in Manhattan, every Monday, 3 of which are in different facilities all of which have corresponding parking issues. I.e., there is no parking.

What makes this even more difficult to understand is that I work in the city. At the very bottom tip right by the S.I. Ferry. So what makes working so much easier, I wonder.

It's not the distance. Work is farther than the farthest appointment in NYC. It's not really the commute either. I take the Metro-north to work and then the subway, but since my Kindle and I have become best friends, this is actually enjoyable. Driving to the City with Owen is usually just after the A.M. rush hour and I usually get out right before the P.M. rush hour. I guess it could be going between the offices, incurring $75.00 in parking, having to drag diapers bags, splints, extra clothes and food for the two of us for the day.

But mostly, after having 5 weeks off, I realize it's the emotional baggage I drag around every Monday. Waiting to hear the Orthopedist tell me that we need another round of casts (oh, and don't be surprised that we will hear that this coming Monday, because we will). It's hearing the pulmonologist tell me that she really does think he has asthma on top of everything else. It's going to P.T. and O.T. and listening to him cry. AND I DON'T WANT TO DO IT NEXT WEEK!

But I am going to. Even though I feel like kicking and screaming. Even though I want to pout in the corner. Even though the thought makes going to work seem more enjoyable. I am going to do it.

And then, for the whole month of August Nick is going to do it because he is off. I get to feel like I am on vacation (while I am at work) for one more month!

An update on the patient, summer and what's doing

Owen is great. He is happy and adjusting well. He is still not doing everything he was doing prior to surgery, but everyday he uses that left arm a little more and he even did some scooting on the floor the other day. Prior to surgery, Owen was a professional scooter. He would do this move where he circled his left leg which would cause him to scoot along the floor and if he went too far one way, he would roll himself over and then scoot and roll and scoot until he made his way to whatever toy he wanted. I miss the scooting and I hope we get it back. His cut, which is very big, is clean and thin and when all is said and done, it won't be the horrendous eyesore that I was expecting. I am not sure if that will change over years of surgery in the same spot, but for now, it's not so bad for what it is.

It is the summer! Yay! It's been uneventful so far. Nick had ten days off. He spent a lot of time with Gavin. They went on bike rides and had a picnic. They played. We went to my parents and all the kids swam! Even O. He could only get wet to his butt, but he loved it! Caleb splashed and attempted to drink the pool. It was a lot of fun. We have been bbq-ing a lot. We have finally got the yard to a place where I would say, it looks beautiful with all the flower gardens and pots of vegetable and herbs. The backyard is really a nice place to hang right now. Things have been calm. A nice change.

Gavin is at camp in his old school and it's day two, but so far so good. All seems really good right now. The camp has a theme of "around the world" and this week he is in Jamaica. Wish I was too!

Bringing up Gavin's old school, St. Peter's reminds me of something I wanted to share. When Owen was in the hospital, our neighbor's daughter (our upstairs friends that we bought our house with) did something pretty amazing. Madison decided to start a fundraiser for Owen. At church that week, she made an announcement asking all of the teachers, staff, students, parishioners, and parents to make a donation on Owen's behalf. And they did. Madison raised $255.00 for Owen. And at 7 years old, that is pretty amazing. I get choked up every time I think about it. It's pretty amazing to have friends that would do something like that for O. We cannot thank her enough or the people of St. Peter's. It's not a wealthy community by any means and to think that they came out of their pockets in support is so generous and selfless. Thank you just doesn't seem adequate.

And as always, the outpouring of support and notes and cards and messages was amazing. We needed all your words during that week of craziness. Thank you.

Write soon.
Sara

Post-VEPTR and no folks, that's not plural

It's 9 days post-surgery. And we are home. And that is a wonderful thing. For those of you who want to know what the surgery experience is like, read this. For those who don't, don't read this post. It's not horrible or full of gore, but it's not particularly pleasant either.

This is what our week was like. Monday we arrived in Philly. We had to go to the hospital for a 3D chest CT scan. Basically the terms under which we were there having the CT Scan were: If there is no CT Scan, there is no surgery. And we cannot sedate him because Owen has centralized apnea and therefore must be put under general anesthesia and monitored. And my terms were: no general anesthesia period. He is having surgery in the morning and we aren't putting him under 2 times in 2 days. No. Their return terms: We aren't going to perform the CT Scan if he so much as moves or cries. And my return terms: Oh yes you are. So it was a tense situation. But a little help from benedryl (with permission of course) and Owen took a well-timed nap and we got the CT Scan done. I literally sweated through it, but the relied we felt when it was over was immense.

Monday night, we went to the hotel and played. We went out to dinner. We tried to show Owen a good time.

Tuesday morning at 4:30 am, we wake up and Owen is on to us. He can see that we are anxious and he is anxious too. We get to the hospital for 6am. We are called in at 6:30 and Owen is given some medicine to calm him. They should give the mommies that medicine. Owen was now fine, but we were scared. We met with the docs and the nurses. We went over everything with each one of them. And by 8am, they took Owen away.

We went to get coffee. And we met up with one of the moms I had been talking to whose son had VEPTRS placed the previous Tuesday. That kept us going. Meeting her and her son gave Nick and I such hope. It was one week later and they were both in the cafeteria, he was smiling, gave us a high-five and he was straight. It was amazing. We felt a little better.

Surgery took 7 hours total- 2 of which were positioning and prepping. At some point they came out and told us that due to O's extra tissue (facia- which is comparable to scar tissue) it was a very difficult surgery and they were only able to the complete the left side. He was under for along time at that point and to start working on the right which would have taken about as long would have been too dangerous. So we have to go back. I am disappointed that we have to go through it again, but of course, what's safest is the best. I just don't know how I am going to look Owen in the eye next time. Safe to say, I am not getting the mom of the year award from O. At least not while he and I cannot have an intelligent conversation about why we are doing this.

When we got up to the ICU, Owen was having a little trouble breathing. They thought they would have to intubate him again. They took some x-rays and he had some fluid in his lung. We waited and they decided to let him breathe with just the help of some oxygen and see if it would work itself out since he was saturating okay.

The first two days were hard. He was hooked up to 5 machines. He had a central IV line, an arterial IV line, an IV in his hand. He was on morphine round the clock. He had a catheter called an OnQ for pain near the incision site. He was on oxygen. He had a huge dressing on. He was pale and puffy and could barely cry due to the intubation. We watched his heartrate and his oxygen levels constantly. He wouldn't make eye contact with Nick or I. He couldn't poop. It was not nice. It was miserable. The hospital was amazing. Their ICU was incredible. Owen had a nurse to himself. He made a peep and she was in our room over him. I didn't even change a diaper because by the time I checked it, she was in there and it was done. I felt helpless and was thankful that someone knew how to take care of him. I couldn't hold him or move him. I just kissed his forehead even though he would not look at me.

On day 3 he was still retaining too much fluid. It was around his heart and lungs. They had to give him diuretics to help him. At one point, they took his oxygen out to see how he would do and he immediately desaturated, turned bluish and vomitted. It was still a touchy situation.

Day 4, he saw his brothers. He talked. Even smiled. Still a lot of pain.

Day 5, he smiled some more. He touched his toys. He talked a little more. Still pain. They were able to take his O2 out. We were moved to the surgical floor, no longer in need of ICU level care.

Day 6 he turned a corner. He kicked his legs, shook his head no, smiled, touched his toys. Laughed at Elmo. Played peek a boo.

Day 7, we were both so ready to go home that Owen was a star for the nurses and we were discharged. Thank the Lord above.

These last two days have been good. There is still some pain and now a cough, which usually happens after he is put under. We are taking measures to help it go before it turns into pneumonia.

We are post-VEPTR. And although we have to do it again, the fear of the unknown will be a thing of the past and we will know what to expect and how to deal with it. It will be no less hard, but we will get through it.

I have to go now, but I will write a post over the weekend about the pretty amazing people we have around us and all they did while we were away. We love you all and owe you a tribute!

Thank you for the prayers and support everyone. We wouldn't have made it through this without everyone being behind us.

11 days and other things....

11 days until VEPTR surgery. I am not going to speak on it again. At least not now. I pretty much feel just the same as I felt ten days ago. I just wanted to update the countdown, as we all know, I love a good countdown. Ask my bridesmaids. When I was getting married, I sent them a countdown email daily! What fun (for me)!

Anyway, I am in the midst of trying to prepare. Owen gets his clubfoot cast off on Monday morning and we get new feet and now for the first time ever, knee braces. I feel a little funny about pushing the knee braces while he is having surgery for the VEPTRs, but we shall see. Our orthopedist feels that if I don't put them on, I am wasting time. She went as far as getting emotional about it. I kind of feel like sometimes the doctors don't remember that Owen is human. He is a person, subject to the simple things such as pain, discomfort and a lack of patience for the constant next thing that is happening to him. I see how resilient he is. I see how forgiving. How far he can be pushed. But sometimes I think it's okay to allow him to heal from one of the most serious surgeries he will ever have, without shoving his knees in braces, especially for the first time. But that's just me. I will gauge what I think my son can handle and I will react accordingly. As it is, the club foot brace is non-negotiable. He must have it on, his foot must be stretched. Our orthopedist also told me she feels we will probably have to correct his foot again. I am not happy. I think it may be time to talk to some other parents and some other doctors about what the plan should be. We have just spent 12 of 14 months in casts. Why are we already planning to spend more time?

Just some thoughts.

Hmmm, as you can tell, I am in a bad mood about this.

But not all the time. I feel like the blog is where I get to vent and when I vent in writing, it comes out like it is in my head. I guess because there is no pressure to glaze over things and put on a happy face. So I am sorry if I am downer right now, please just bare with me over the next few weeks.

In other news, we have had some really good weekends lately. We had Dan and Heidi down for Memorial Day and we cooked out. We made lobsters and clams. It was a lot of fun and it was amazing to see the babies reaction to the backyard. Owen has been outside in back more because he won't go to bed before 9:30pm. But Caleb had not been back there since he was a newborn. The sheer joy on his face. His hands and feet were going in circles and he would just burst out laughing as the wind blew or the kids swung on the swing set. It was so pure and just the cutest thing you ever saw. Then Owen ate an ice pop by himself. He held the stick and and ate the ice pop! I was so happy, I almost cried. I know Owen will eat on his own, it's just pretty amazing to see. Eating on his own was never guaranteed, his hands were so incredibly closed when he was born, I couldn't get my thumb in the curl of his hand to clean it. However, he is part Collins and part Sedey and when it comes to good food, well, where there is a will, there is a way.

Here are some shots of Caleb's pure glee:



and Owen's first ice pop endeavor:



and of course, Gavin, Madison and the lobsters:



The basic day to day and week to week of life has been happy. There is just a dark cloud off the horizon that seems to be getting closer. I can't wait until it's over and my baby boy is home eating ice pops!

Countdown to the VEPTRS...21 days.

And I am terrified. I don't know how else to explain the feeling that sits deep in my stomach, that bubbles up when I let myself think about what will happen in 3 weeks. The feeling that brings tears instantaneously, that makes me nauseous and that makes me wish we could go back to any other time besides now. I am so scared. A few weeks ago when he had pneumonia and I knew it would be postponed again, I felt relief. My kid had PNEUMONIA and I was relieved. I knew it meant we had more time. And speaking of time, why is it flying right now? First VEPTRS were in March. It was New Years and then it was March. That happened in the blink of an eye. But a high fever and a spot of pneumonia set surgery back. Surgery was then scheduled for 5/31. March to now, flew. April is a blur. By the time I am finished with this blog post, it will be June 14. And I can't make it stop.

I feel like I am on an emotional roller coaster. I understand what the VEPTRS will do for Owen. I understand how blessed we are that such medical technology exists. I know my son will have a shot at a life which does not include debilitating respiratory issues. I get it. And I am thankful. But my poor baby is about to undergo a surgery that includes 4 rods, incisions, drain sites, pain, lumps, bumps, skin breakthrough issues, and the beginning of the next 15 years of surgical management of his rib cage and lungs. This isn't 1 time surgery. This is the next 15 years, 2 surgeries per year for expansion. At a minimum.

I cannot wait until I write the blog entry after surgery when life has calmed down that says- all went well, we are great, Owen is fine. I cannot wait. Only the parents on the other side of June 14, who have VEPTR kids, know what that feels like. For now, I only know today and the next three weeks. And I hate this. I try to feel lucky. I try to feel blessed. I can't right now.

If there was one part of Owen's syndrome that I would change it would be the progressive scoliosis. It's a life changer.

I don't want my baby to go through this. Maybe I sound like a baby. I don't care. I hate this feeling.

Please pray for Owen. What he is about to endure is serious. I am not sure how much I will write between now and then. Clearly, I am in a bit of a state. Please keep my boy in your thoughts.

Thank you.

Looking back...and forward.

What a year! If you have been reading my blog for a while now, you know that this has been an incredible year for our family. There is so much that happened, with the birth of the babies, Owen's diagnosis of Escobar, the adjustment of 1 child to 3, Gavin's adjustment of being an only child to being the big brother of 2, appointments, appointments and more appointments, surgeries, good news, bad news, and our family grew closer than ever before.

I wouldn't change a minute.

Having a baby with special needs has brought Nick and I closer. It has also brought the 5 of us extremely close. Nothing is taken for granted and there isn't a day that Nick and I are not wondering how the dynamic of our family is affecting each one of us. We have learned to steal moments of time to appreciate each other, to hug and kiss, to tell Gavin we are proud of him, to be there for each other in support. And it's not like this all wasn't there before, it's just that now we have a reason to think about it, to do things deliberately so as to not damage anyone, to consider feelings more, to have concern for each other's stress levels. We have faced things that no one ever wants to face. We did it together.

There is no one on this earth that I could have gone through this with, except my husband. And we are still happy. We are proud of each other. We have done a good job in this last year. We have many years to go with this situation, but I honestly believe that none will be as hard as this first, even if the procedures become more complicated, the hospital time extended, the balancing act more strenuous. We will do it.

We love those little boys. All three of them. I cannot tell you how many smiles have been put on our faces since the babies have joined us. Gavin is an amazing big brother. Protecting, worrying, watching over and of course, working very hard to keep Caleb, who is walking, out of his room because "those are my toys." Owen is such a joy. Happy, loud, funny, smart and understanding. Owen is so forgiving for everything. And he works so hard. He used a spoon to eat ice cream. He rolls over and over and over. He scoots to get where he wants. He opens his hands completely. What milestones we have reached! Caleb is hysterical. He knows he is funny, he puts on a show and wants you to laugh. He is also the best to cuddle with. He loves to hug and kiss and lay on your chest. Caleb is also smart. Lots of people say that Owen will be the brains and Caleb the brawn. I say, don't count Caleb out. He is a bright little boy.

I will never forget the babies birth and the tears that fell on that day and the ones after. I will never forget the fear, lack of understanding and mourning for a healthy baby. Nor will I ever forget the happiness, the joy, the way our families and friends came together over the last year to show us they care and they are here to help. I learned to lean on people in this last year. I have never been good at that. I had to and I am glad I did. I am forever grateful to everyone.

What a year. Happy Birthday Owen and Caleb. We love you more than words can say!

Busy, busy, busy

Oh my dear blog, I think about you so. I mean to get on here more often. I want to write more often. I probably even need to write more often for my own mental health. But life is just so busy. It gets in the way.

Speaking of mental health. I have been spending a lot of time thinking about it lately. And we have made a few changes in our household. Changes that have made our life busier, but hopefully for the better. For one, Nick and I have one solid month of exercising down. We are in the midst of a competition. We compete weekly to see who exercises more. He wakes up at 4:45 and I wake up at 5:45 to do this. It seems crazy, but I have never slept better.

So far, in the month of March, I won 2 weeks, we tied 1 and he won 1. I exercised 25 out of 31 days and he exercised 21 out of 31. Not bad a bad start if you ask me. In addition, Nick is playing basketball on Wednesdays. I am doing Yoga on Monday (more on that later). Gavin is doing Cub Scouts on Thursdays and football on Saturdays.

It probably sounds crazy, adding all of these things into our already hectic life. But I think it really helps to work out some of the stress we have felt over this last year. I have wrote before about how we are always telling everyone that everything is fine. We are fine, Owen is fine, the kids are fine. And to some extent, it's true. We are fine. We are great sometimes, we are good sometimes and we are not at other times. We are happy and we are sad. We are adjusting still. One year later. (And don't think I have forgotten to write about babies birthday, I am just waiting until after their party this weekend!)

If you notice, all this busy is mostly physical activity. This is purposeful, because why would I ever add more to our life unless it was to help work out the stress. And it's working. We feel a little better. We sleep a little better. Life seems a little bit more like it belongs to us because we have things we are doing for ourselves.

Which brings me to Yoga. I went last night for the first time. A little place called Yoga Haven in Tuckahoe. The class started at 7:30 and ended at 9. It was hard. It was sweaty. It was great. A few times while we were going into what seemed like our 5th round of downward facing dog, into plank, into cobra, into table, find your lunge, find your breath, swing your leg back into the air... I found myself wondering if I had wandered into the advanced class and if this was a special kind of theraputic hell designed to twist me into submission. But then, it was time to lay on the floor and relax my forehead, eyes, jaw, shoulders, etc... and I realized, with an "ah ha" kind of moment, "this is why I am here." It felt great. My shoulders are loose. My legs, which have been taking a beating lately with all the walking, feel stretched and long again. My head, feels clear. I can't wait for next week.

And last but not least, the boys. Gavin is a cub scout. Or maybe it's a tiger scout at his age. But we joined and so far so good. Tomorrow night, I will get his uniform shirt and his badges and handbook. He feels it is very important to get the handbook. He starts football this weekend. Flag football. He is excited.

The babies are good. Everyone is relatively healthy this week. Owen went from 2 casts to 1 when they realized we are getting no improvement with his left foot. She was going to surgically correct it this month, has decided to wait since it would impact the VEPTR surgery. So she is going to correct his clubbed foot (please, let this be the last time!) and we are hopefully going forward with the VEPTRS in May. Caleb is walking. Just walking every where he wants. He is also tearing up my house. He touches, knocks over, pulls down, or messes EVERYTHING! On the one hand, its adorable to see him walking and waddeling and hugging my legs. On the other, a couple more months of stationary living would not have been so awful!

The twins birthday was March 31. Their party is this weekend. A circus theme. As soon as we are done with that, I will post about their birthday and my reflections on the year this has been.

Owen's splints

There were a couple of moms recently that were exchanging pictures of splints so that they could show their OT's what some people use. I realized that I have a box full of Owen's splints from about 3 months old. I got rid of earlier ones just because we had gotten new and I didn't realize it might help others to show them. So these are the ma many splints of O.



These are his hand splints. These were his third pair.



One of his knee spints.



This is also a knee splint. The odd C shaped side was to accomodate his cast at the time and also work the hips.



This is an elbow. These were really successful. Owen's elbows are in good shape!



Feet with bar for hips. Owen's feet are different because one is a clubbed foot and one a vertical tallus. They are not able to treat them both the same, so a traditional Ponsetti brace was not used. This baby was heavy metal. I kind of liked the industrial look!



This is O's whole body brace. This was for the scoliosis.



The big box of splints!

End of Winter Woes

I cannot wait for spring. In a nutshell, our last 6 weeks have went like this: Caleb gets a fever. It's high. It's 105.5. We go to the hospital. We come home. We see the pediatrician. We battle the fever with cool baths, baby vicks, and round the clock motrin and tylenol. We take antibiotics. On day 4, the fever goes. One day later, Gavin gets a fever. It's high. We battle his fever. Cool baths, motrin, sleep. We see the pediatrician. We take antibiotics. On day 3, it leaves. Following day, Owen gets a fever. It's high, but not like Caleb's or Gavin's. We see the doctor. We take antibiotics. We take motrin, tylenol. We are all miserable. On day 4, Owen's fever goes. We get a break for 2-3 days. Then Caleb gets a fever. Repeat above sequence. When it goes 4 days later, Owen gets the fever. This time it's accompanied by a horrendous cough. Caleb has white sores in his mouth. Owen coughs incessantly. The both go to the doctor. Caleb has thrush. Owen has a lung infection. Guess what? We have new antibiotics. We will take them and then we will fall down in the corner in a heap of exhaustion. I cannot wait until this is over.

When Caleb is sick, I worry. He coughed so hard. He was miserable, crying and wanting to be held. His fever was incredibly high and he had a seizure from the fever. It's horrible. When Owen gets sick, I spend the week in a knot. He has issues with breathing as it is, so any kind of chest/lung congestion and cough just means you watch constantly to make sure he isn't turning blue. You wait because at any moment you could be rushing him to the hospital. It's downright scary. Thank God, his O2 sats have been okay. Thank God we have nurses. I am not sure how we would get through these times without them. At one point, some of them would take over giving Caleb a dose of Motrin at 4 am because it was time and they were awake. Thank God.

I cannot wait for the spring to come. I want the winter to go and take with it the coughs, fevers, runny noses, and misery. Bring on the allergies!!! Just kidding.

March Updates

VEPTRS got moved!!! Yay!! I am so thrilled. Two weeks ago when we were in Philadelphia, the general surgeon who we met with to go over his involvement in the surgery explained that the rods would protrude about 1 inch. When he said that, I felt as if I had been punched in the stomach. One inch? Outside my baby's body? One inch of metal visible in lumps coming from his back? How would one do therapy on him? How will he sleep on his back? How will we hold him? How is it possible to keep them from coming through the skin? All of these things raced through my head at the same time. I am pretty sure, I managed a nod and soon after we left the office. It was monotoning in PA that day and I felt it was apropos. All of the sudden the surgery felt ominously close.

It just so happened, Owen had a fever that day. And the next, and the next and so on and so forth. I mentioned this to the nurse at Dr. C's office. Dr. C being Owen's orthopedic surgeon for the VEPTRS. They called me back and said, we do not want want to operate in a month where he has been sick. We would rather play it safe than sorry. And so would I. So the surgery has been moved to May 31. Which seems right. We will have a three day weekend together right before the surgery, where we can hopefully do some fun things and spend time together before we have to spread ourselves over three states.

And all of this means that the twins will get a birthday party! Their first!!! And I could not be more excited. I feel like this is a party for all of us. The twins turn one, but so do we in a way. It's our first year with twins, our first year with Owen and all of his medical care, first year of appointments, first year of surgeries, therapies. It's our first birthday in a way. I am planning a carnival themed party. With ring toss, popcorn machine, bean bag toss, cracker jacks, cotton candy, magician, face painting. The twins won't remember a thing. But we will and we could use a dose of fun right now. Even Gavin is excited. For a while there, he wasn't attending, despite the fact that the majority of the party is his friends. After taking a look at some of the decorations and the cotton candy I bought from target (on sale), he has decided it would be in his best interests to attend. I knew he would see it that way eventually.

For the rest of March, life goes like this:
Appointments with therapist
Appointments with Ortho
Carla's birthday
Appointments with therapy
Appointments with Ortho
My birthday
Appointments for CT scan (overnight stay at NYU)
which may quickly be turning into foot surgery (and a longer stay at NYU)
The twins birthday.

Its a month of appointments and birthdays! I am turning 33. I remember when I thought that was old. Now I think I was just crazy when I was young and had thoughts like that.

"Retarded"

I had no idea today was "Spread the Word to End the Word" day. And I am such a believer in this cause that after I read a good friends blog, http://niederfamily.blogspot.com/2011/03/word-retarded-is-not-cool.html, I decided that I too would spread the word. This is not the first time I have written a blog entry on this word, it's just the first time I have posted it. I have such contempt for this word that I have not been able to intelligently express my thoughts. But since today is the day that officially asks people to stop saying such a hurtful word, it just feels right.

I hate the word "retarded". I have a sister with Down Syndrome. I have a ton of people, friends and family who casually use the word retarded. Since my sister Madison was born, I have started asking people not to use that word. Most of the time I am met with an incredulous look, as if I am the one who is being insensitive or too sensitive. A look that says "why did you have to make things so uncomfortable." And while I have stood my ground, it hasn't been easy. I have felt uncomfortable too, stupid even. I have felt like the odd ball who is taking things too seriously or getting my feelings hurt too easily. But it's not me. It's you. It's those of you who think it's okay to call anyone or anything retarded.

I guess you never had a sibling born with Downs, or a child, or a cousin, or a niece. I guess you and your family have never had the experience of looking at your baby and wondering, if she will be okay, if she will go to normal schools, if people will make fun of her, if she will be called a retard, if she will walk, talk or have any semblance of normalcy or what is considered normalcy in this world. I guess you never shed those tears, held your family and prayed everything was going to be okay. You have also never celebrated those victories when words are achieved, walking is achieved, basic skills are reached, milestones are met. You haven't experienced the pain or the joy. If you had, you would never use the word retard. A word that has been stripped of its meaning and instead used to degrade others. A word that does nothing more than hurt. A word that seeks to place people with different abilities down. Why would you ever do that?

So if you are my friend or my family or someone who reads this blog, please stop using this word. As a mom of a special needs child, as the sister of someone with Downs, as a friend to people with many differently-abled children, I am asking you to stop. You will only be doing something good if you do.

Thank you.

Grand Central Station. Literally.

I have been thinking a long time about writing a blog entry on Grand Central and the beast that it is. I just think the human behavior exhibited there (and I loosely call it that) is fascinating. People behave more like animals or cars even, than people. If they weren't standing on two feet, wearing designer shoes and chatting on their cell phones I would think they were something that belonged in a herd.

It first begins when you are waiting for your Metro-North train in the morning on the platform to go to Grand Central. You can tell that the mood is a little pensive as people rush to get their "spot" on the cold outdoor platform, the exact place to stand where one might score a seat. A lot of consideration goes into this because you never can tell where the doors will open. So you try your best to estimate. People begin to glance around, looking at one another as if gauging their competition for a seat. If you get stuck standing, waiting for a train next to someone who is pregnant or who walks with a cane, you're screwed. You know they are getting to sit before you. You adjust accordingly.

Then the train arrives. You chase down that door, while the train is still moving. You pick your entry vantage point. Will you attempt from the left, right or middle? I actually overheard someone advising someone else just last week that "it's much faster to go in from the middle, it confuses people." Hopefully, that's a helpful hint for someone. Maybe you get on from the left, but saw through the windows that there were seats to the right. Now you have to cross the line of people entering from the right and no one will like you, I assure you.

You are on the train. Maybe you squish in and become the third person in the row, which by the way, people hate. Or you score an empty chair with no one across from you taking up your leg room. Maybe you stand. I stand, a lot. You are on your way to Grand Central.

Now somewhere between Harlem 125 and the tunnel into Grand Central, the occupants of the train morph. I can't say for sure what they are. I am sure science could figure it out, but the behavior goes like this:

Two minutes before the train door opens, the most eager of these beasts, crowd the door. They line up facing one of the doors anticipating which side will pull up to the platform. I personally take much joy in them being wrong because the line is now forced to turn around to face the opposite door, leaving the most eager of the bunch at the back of the line. There is no airplane-like courtesy, you know, where you allow the person in the row before you out to exit the plane. Oh no, if that old lady with the cane is not aggressive enough to bust into the line, and quite possibly use that cane, she may sit in the train until it's close to empty.

Now the race begins. The race for what? Your subway? 42nd Street? Newsflash: subways come every three minutes. Must you almost knock me over to get to yours? Apparently, the answer is yes. Or if you are not attempting to knock me over, you are hovering one inch from me while occasionally "accidentally" bumping into the bag that is on my shoulder. Maybe you have enough manners to say "excuse me" as you try to mow me or others down.

As the race down the platform ends, we all enter the main hall of Grand Central. A beautiful land. Full of marble and huge windows with ornate wrought iron designs over them. A ceiling painted in a calming blue with the constellations detailed. Sun streams through, making the room almost glow. But you didn't see any of that did you? Because you are too busy attempting to hurdle yourself over someone. As the beasts criss cross, running into each other, cutting each other off, muttering curse words, I begin to picture them as cars (in L.A.). The lines of people form outlining the appropriate lanes of traffic so to speak and God forbid you need to cross one to get to an exit. It's like a challenge, to cross your lane of people, cross the lane of people in the opposite direction and get to the door. No one likes you. You wasted two seconds of their day. They had to slow down. How dare you.

And there should be laws against texting or talking on one's phone while moving in this traffic. You could easily run someone over or worse, cause a people accident, which could cause a people pileup. I swear. I have almost seen this happen.

They rush down to their subways. At the line for the stairs, they cut in front of as many people as they can at the top of the stairs. They are like bad drivers. They make their way down the stairs and allow a 1 inch distance from the person in front of them. They maintain that distance while the person in front of them runs their metrocard and pushes through the turnstile. The person in front of them has to run their card twice which causes an accident. They have actually run into the back of that person because they were walking too close. They are so annoyed.

Again the criss cross lane change issues happen until they are finally standing at the platform for their subway. The subway arrives. It's stuffed. As people are attempting to exit the train, the beasts are pushing themselves on. They see one inch of space and feel everyone should "push in, there's more room." They press up against you and sigh loudly, as if you are the problem here. If only you took up less space.

And finally, it's over. The subway leaves Grand Central. You are exhausted and you've only started your day.

VEPTRS

We had an appointment with Dr. Campbell yesterday. I went alone with O. We set out on the highway at 8:30 am. It was a fairly uneventful until we got to Philly. I approach our exit thinking that I am going to be about 3 minutes late as it is, and there are the police, blocking the exit. Great. So I tell myself, "Sara, just drive to the next exit, get off, find the highway going the opposite direction and head back towards the hospital." Phew, we have a plan. So I do this successfully. I am headed back to the hospital, I am able to get off the highway and have even used the GPS on my phone to find the way. Except, once I can almost see the hospital, there are more of those damn cops blocking the street again. Now I have to go some other way and I have no idea where I am going. I call the office and the first woman has no idea where I am or where I am going. The second woman says "we know your going to be late, it's fine" and hangs up. The third lady, exclaims "I know where you are!" and proceeds to give me directions and I love her. Truly. I start off on my way and lo and behold, the cops have the end of that street blocked off as well. Fun. I try to ask the cop how to get to the hospital and he says "just follow Market or Spruce". He might as well have said, "make a right on Mars and two loops around Saturn" as I cannot see Market or Spruce. Needless to say, I find them. My instincts tell me that I should follow the traffic, because what are the chances that the whole line of us isn't going towards UPenn or CHOP? And they are. I feel smart. I also have the chance to file all of my nails while I am behind them. Multi-tasking at its best.

Finally we reach the hospital. We see Dr. Campbell. We talk about the various loose end appointments that have to be done prior to surgery. We lay Owen on his side and I draw in a deep breath. Will Owen have the inch (of fat) to be pinched??? Why, yes he does, or he almost does. We can go forward. It strikes me as odd this "pinch and inch" test. For a surgery that requires 7-10 days of hospitalization, expandable titanium rods that will literally lift and expand the bones of his rib cage, anchors that will go in his shoulder blades and quite a hit to his lungs, the test we do to see if he is surgery ready, is pinching the fat on his back. Hmmm. It's the combination of complex medical technology and something it seems like my grandmother would do that is sitting awkwardly within me. Now, of course, I know that's not all that went into it, but that is what we accomplished yesterday.

Surgery will go forward 3/22. We need O to be healthy but other than that, it's happening. It seems so big. Too big for my little baby, even though he is 18lbs! That's big for a child with Escobar. And 7-10 days in the hospital is just bringing me to tears. Not only for O, but for the whole family. Splitting the family up while we are at NYU is hard. Splitting the family between Philly and NY seems sad to me. But we will figure it out and since I turn 33 that weekend, I think everyone will come for the weekend. We will have a party at the Ronald McDonald house or if by then, it's safe for Caleb and G to come for a while, in O's room.

That's all I got for now!

To cast or not to cast...

Prior to O's surgery, they had to take his cast off the clubbed foot. He has never been so full of joy. He spent the last week kicking, rubbing, and moving that foot. Everyone who saw O last week mentioned it. He was happy as a clam.

Yesterday, he had a cast put on. He was so so sad. Just sad. He cried and looked miserable and stared up at me with those big brown eyes. It broke my heart.

So I started to think. His feet will need another tenotomy. This time she will do it under anesthesia. She wants to correct the club foot at the same time she does the surgery for the vertical tallus, which is great because we only get anesthesia once. Why should he have to spend the next 4-5 months in a cast while we wait until after the VEPTRS to fix it? We shouldn't.

However, this means that Nick and I (and the therapists, nurses, friends and family) will all have to stretch that little foot, A LOT. I am talking about, if you touch him, you stretch him.

He is casted now and will have one more cast next Monday. Dr. F will let me know when I can soak that cast off. Thereafter, I will take pictures of his little foot to show all of you our progress over his free time.

Now that his spine is untethered and things are a bit more loose, we really have the opportunity now to correct his foot and maybe casting can be minimal this time around. If you saw how happy he was without a cast, you would know that the work will be worth it. He loves his knees! He loves to rub his feet together. He hates his cast.

I will keep you posted on how our home program goes.

My boys

I have been so busy lately and with everything going on, I have not had time to sit down and think out what I want to write. I had entries about Christmas started, one about a book I recently read and loved and I just haven't had the time to finish and/or write about them. Life is too busy right now. I don't often say I need to slow down, but the more tired I get, the more I realize, I do. I need a break. Needless to say, I wanted to write a quick update on the boys.

Owen had surgery last week on 1/27. It went well. The doctors were happy that all of his anatomy was in the right place, the cord de-tethered and snapped back about an inch. Hopefully this will loosen him up a bit and will allow for his clubbed foot to be corrected for the last time. Fingers crossed. He is happy again and this morning was trying to dance as I was leaving for work. He has been all smiles since we got home. It really is theraputic to be in your own home, healing, with your brothers and parents. These hospital stays, where we are all seperated and apart and basically just pass each other as we trade spots in the hospital or at home are good for no one. During those times, I notice, I need to be with my family. I want my boys home and together. It just seems we are all happier that way.

Caleb is so good and so funny. He makes a funny face and talks a lot. He waves and says "hi". He says "hey" and "what" and "Ga" constantly. I am fairly sure he is calling Gavin. He is a second away from walking. He walks around all the furniture. He thinks about taking a step and then drops to the floor and crawls. He is so fast. The other day he had half of the dogs food thrown all over the kitchen before I even got there. That was fun. He is mommys boy for sure. He follows me everywhere I go and I love it. I can't get enough.

Gavin is great. He loves the 1st grade, his school and his friends. We just finished his African-Amercian Project for Black History Month (and when I say "we", I mean "me".) We have the science fair coming up where I will make a diorama of the planets. No, I am not going to lie to you and say he will do it. The truth of the matter is, he will help and eventually lose interest and I, in the interest of getting it done, will do it. He is 6. There is only so much that can be expected of his attention span. If you don't want parents to do projects, wait 4 more years and then assign them.

The snow has been insane. I am sitting here waiting for the next 5-10 to drop tonight. I am so done with snow. Nick made use of some of the huge piles in the yard, he and Gavin started building a real igloo. I think he was saying something about sleeping in it one night. Ha. Pneumonia is not on the menu this month. Needless to say, if he and Gavin want to bring sleeping bags out there for an hour one afternoon, that would be fine.

And we are good. Mostly tired. Surgery takes a lot out of us. The anxiety, no sleep, worrying, trying to work as much as possible. We are tired. But we are ok. January is over. We have a 7 week break before the next surgery. Nick is on vacation soon. We are looking into a weekend away for the two of us. It will all be fine.

More updates to come.

A Roller Coaster called WBC

WBC as in White Blood Cell count. Two Mondays ago, January 10, 2011, we had Owen's pre-admission bloodwork done. Surgery was scheduled for 1/20/11. On Tuesday, January 11, I received a call that O's wbc count was 29. Anything between 10-15 is normal. The drs. wanted him in for bloodwork the following day. January 12, we take O for bloodwork late in the day. At 10pm, the dr. calls and tells us the wbc count is now 32. Now we have to bring him to the pediatrician and have repeat bloodwork the following day. January 13, we have bloodwork done and we see the pediatrician. WBC count is 37.5. January 13 is the night before my grandmother's wakes. I was planning on going to dinner with my cousins. Instead, I head to the hospital for x-rays of O's chest. His breathing had been a bit labored, so everyone is expecting a lung infection. We go to the hospital, have the x-ray and are sent home with no concrete diagnosis. We are given antibiotic on our way out the door. Maybe there is a spot on his lung, maybe not. January 14 we go to the wakes all day, but we are expected to go for bloodwork following the funeral on the 15. And we do. Now the wbc count is 25.9. Okay, antibiotics must be working and we are on our way down. Bloodwork on the 17th comes back at 25.8. Wait, that's only .1. No one is happy, least of all O, who has been stuck for a week straight. Surgery is cancelled. Pulmonologist wants to see him and the x-ray from the hospital. Pediatrician wants an ultrasound of his feeding tube and recent surgical sites. I take him to both. Pulmonologist sees a partially collapsed lung and some infection. I feel relieved. We all decide to leave O alone until January 24, this past Monday. I take him for bloodwork on Monday. His wbc count is 19. His g-tube site is infected. Could that be the reason? Maybe. No one is thrilled that we found the real reason for the high count to begin with. The lung infection should have been cleared up with the antibiotic and if it were viral, the numbers should have behaved differently. Everyone is stumped. But, they have decided to put him on more meds and allow him to have surgery. I am just exhausted from this all. The emotional energy that goes into two pre-surgery weeks is amazing. Anxiety, fear, waiting, anticipating. Then it's cancelled. Do it all again and then it might be cancelled. I am not sure if I am thankful it's not or what I feel. I am sure in the back of my mind the entire time he is in, I will be having nightmares about wbc counts.

Please, as usual, keep O in your thoughts and prayers on Thursday. Keep all your fingers and toes crossed that he comes out of this perfectly fine and that he heals quickly. Thank you.

Diane Gagliardi Collins 9/10/20-1/7/11

Oh Nan, it was too early. I know you were 90, you don't have to remind me. It still feels too soon. I am so sorry I did not make it to Virginia. I know you aren't mad. I know you understand. I just wish I had. I wish I could have kissed your cheek one more time. Smelled the shalimar. Held your hand. Told you face to face, I love you. I am mad at myself. I thought I had more time. I miss you. What an example you set for us. I read your obituary today and I am so impressed. You managed to do it all and well. I aspire to be like you. I always have though. You would be so proud of your boys and your grandkids right now. We have never spent so much time talking to each other. We are sharing stories and pictures. I know you know. I know you can see us. I feel so lucky that I got to spend so much time with you over the years. Remember when you taught me how to drive on the highway? Nan, you literally had me pull onto the Bronx River with no advance warning. There were probably two inches of room for error on either side of the car and I had never been on the highway before. I thought you were nuts. I was petrified, but we made it! Remember when we baked endless cookies at Christmas time? How about the lunches at the club? Baking cookies for my wedding favors? Taking me shopping? Sleepovers? Remember the time we played golf? I hit a long, straight one down the fairway. You wanted to kill me. You got in the cart and left me standing there. It was hysterical. I think I get my competitive nature from you. Remember Rhode Island? Remember when I used to "do your eyes" for you? Remember taking walks down Ninham Road? Oh Nan. I love you. Lately, I have had to be the strongest I have ever had to be. I know that I get my strength from you. I always admired how strong you were. Strong enough to raise 5 boys, strong enough to lose Pop and keep it together, strong enough to lead our family. 22 grandkids, 27 great grand-kids. Strong enough to lead when women didn't lead. You were the best of all worlds. You raised your family, giving them your all. You worked and held offices and were a leader, while raising a family and being a wife. And it's not like you were an absent mother. You came home on your lunch to make my dad lunch. You are famous for your cooking and baking. Your meatballs...legendary. I like to think I got some of that from you, my love of cooking and serving and socializing over a big Italian meal. I just can't believe you are gone. Your nails and lips, always red. You always looked beautiful Nan. You were an amazing grandmother. I can honestly say that despite having 22 of us, you kept tabs on us. You knew what was going on in our lives. I never felt like you didn't know what we were up to. I know you are with Pop right now. I am so happy for you. He was the love of your life. You knew you had met your soul mate in Pop. And I know the two of you will watch over all of us. Keep your eye on Owen, he needs a little extra watching. I am going to put your obituary at the bottom of this. My uncles decided that in lieu of flowers at your funeral that people should make donations to Down Syndrome or amcsupport.org for Madison and Owen. I am so touched. I can't even express how amazing that is. My heart feels full. It just means so much. I know you would want it that way.

I hear your voice in my head Nan. Don't stop talking to me okay? I love you. Love, Sara (Bernhardt)


OBIT:
GAGLIARDI COLLINS, DIANE

January 11, 2011


Diane Gagliardi Collins, 90, of Kent, NY passed away peacefully with family at her bedside in Leesburg, VA on January 7, 2011. She was born in New Rochelle, NY on September 10, 1920. Diane was loved by her 5 sons, William T. Jr. (Nona) of New Port Richey, FL., J. Peter (Marty) of Kent, NY, Jeffrey M. (Tammy) of Purcellville, VA, Frank J. (Karen) of Eastchester, NY, and Brian D. (Sally) of Wappingers Falls, NY, and adored by her 22 grandchildren and 27 great- grandchildren. She was one of 7 children born to Frank M. and Mary F. (Decicco) Gagliardi of Larchmont, NY. Her father was a respected attorney who practiced law for over 50 years in White Plains. Her sister, Phinina Forbes of Fairfield, CT., and her brothers, Joseph F. Gagliardi of Larchmont, a former Mayor of Larchmont, Westchester County District Attorney and Judge, New York State Supreme Court Justice and Administrative Judge of the 9th Judicial District; Lee P. Gagliardi, of Larchmont, a United States District Judge for the Southern District of NewYork; and Anthony L. Gagliardi, also of Larchmont, a White Plains insurance executive, predeceased her. She is survived by her sisters Gloria M. Gagliardi and Mary Ann (Mitzi) Dugan, both of Fairfield, CT. Diane was a graduate of The Ursuline School in New Rochelle and attended at Good Counsel College in White Plains. In 1940, Diane married the love of her life, William T. Collins of Larchmont. Diane and Bill raised their family in New Rochelle where she was very active in local community affairs including the American Heart Assoc., American Red Cross, United Cerebral Palsy Assoc., Multiple Sclerosis Assoc., Community Chest, East End Civic and Hazelhurst Park Assocs., Civic Counsel on School Safety, and the Mayor's Columbus Day Committee. Diane, like her husband Bill, loved politics and was a strong believer in public service. She was a Republican District Leader in New Rochelle's 4th District for 10 years, served as Secretary for the 1st Ward Republican Committee, member of the Executive Committee of the New Rochelle Republican Committee, member of the New Rochelle Women's Republican Club and member of the Board of Directors of the Westchester County Women's Republican Club. In 1967, Diane was elected to the Westchester County Board of Supervisors representing constituents from New Rochelle and Pelham. She was instrumental in the drafting and passage of legislation creating the present Westchester County Board of Legislators. Diane was then elected to the newly created Board and was the first woman to hold the position of Vice-Chairperson of the Board. She also served as the Deputy Westchester County Clerk in charge of the County Department of Motor Vehicles and in 1978 was appointed as Deputy Westchester County Clerk in Charge of Naturalization. Diane remained in this position until she retired in the early 1990s. In retirement, she remained active as a volunteer at Putnam Hospital Center, Carmel, NY. Diane, like her husband, father, brothers and sons, was an avid golfer and played the game regularly. She is a former member of Rye Golf Club, Rye, NY, Banksville Golf Club, Banksville, NY, where she was the women's club champion in the 1970s, and Mahopac Golf Club, Mahopac, NY. To her sons, she was the perfect mother and a remarkable person; always loving, supportive of their efforts and always willing to be helpful in times of need. Diane is now with her God, and her adoring husband, Bill, who predeceased her in 1987. The family will receive friends at Cargain Funeral Home, 10 Fowler Avenue, Carmel, NY on Friday, January 14, 2-4 p.m. and 7-9 p.m. A Funeral Mass is scheduled for 10:00 a.m. on Saturday, January 15, at St. James the Apostle Church, 14 Gleneida Avenue, Carmel, NY. In lieu of flowers, donations may be made to Down Syndrome Assoc. Hudson Valley, 14 Zerner Blvd., Hopewell Junction, NY 12533 or to www.AMCSupport.org. CARGAIN FUNERAL HOMES, INC. 10 Fowler Avenue Carmel, NY 10512 (845)225-3672