Trying to Explain What it is Like Being "The One" and Joey's Next Surgery: August 8th

Super Joe led us down quite a path last week. Starting with a 102-103 temperature for a few days, not eating or drinking, laying around almost constantly and then ending up with an un-diagnosed and inexplicable rash on his trunk, back, neck and face.

I asked the doctor, "Is it Stephen Johnson Syndrome?" which is a rare, serious reaction to medication. Nope. 

"Is it Scarlet fever?" Nope.

That's when he asked us to get a CBC done to check Joey's blood count. That's when we discussed some very scary possibilities. That's when my heart sank to my stomach.

By the time we walked out of the office, we found out that Joey's white blood count was 13,000, which is slightly elevated and his doctor believes he had some kind of bacterial infection. We went home with strict instructions to call and bring him in immediately if anything changed over the weekend.  Whew! This week-- he is like a new child. 

Have you noticed that by the 4th of July summer starts to speed ahead in fast forward? Where June seemed to meander along and summer seemed like it had just started, here we are in mid-July and we are barreling toward the start of a new school year. How did this happen? 

On August 8th, Joey will have his fourth surgery in one year. The first three were eye surgeries and on the 8th we will check into Akron Children's for a night or two (hopefully no more than that, Super Joe!) for him to get his tonsils and adenoids removed. Between his excessive cases of Croup, his Reactive Airway Disease, his enlarged tonsils and adenoids and his breathing difficulties when he is sick-- it is time. I have looked for every reason and every excuse I could find to not go through with the surgery, but it is time. 

He has to take 2 weeks off of all his therapies. That means no speech, no OT, no PT, no horse therapy and no swim therapy for 2 weeks. I have heard that some children recovery easily and quickly from having their tonsils and adenoids removed and I have also heard that some kids have a pretty hard time. One mom said her little guy wasn't the same for almost 3 months. Other moms have said that once you hit the 2 week mark you should be good to go. Still others have said that day 3-5 is when you have to be careful about staying on top of the pain meds. I also read on a great blog that you should stay away from red Gatorade, red Popsicles and red Jell-O so as not to be confused in case the surgical site starts to bleed. 

Have any advice on this surgery? Please leave a comment or send an email.  Your help is greatly appreciated!  We are hopeful that this will be his last surgery for a long, long time!

Miss You Can Do It

In addition to parades, parties, sparklers and doctors appointments, part of the holiday weekend (or week-- it seemed like it went on and on and on-- which is not a bad thing!) we spent watching two awesome documentaries on HBO. 

The first was McEnroe/Borg: Fire & Ice, which is a fabulous documentary on their tennis rivalry and the mental toughness this sport demands.

The second documentary was my choice and I have been saving it up because I knew I couldn't watch it alone. I also wanted to watch it with my husband and my parents for a slightly selfish reason. I wanted everyone to watch Miss You Can Do It with me because I had already started watching it by myself one afternoon and it does an excellent job of giving a snapshot of the various families and their lives with their children who have special needs.  It shows moms and dads discussing the day they received their child's diagnosis. It shows a young girl at horse therapy. It shows a mom doing daily physical therapy exercises with her daughter. I felt so drawn to the documentary and so drawn to each of their lives because it was comforting to see how other families do it and how they get along on a daily basis. 

Two of the beautiful Miss You Can Do It contestants.

Miss You Can Do It  tells the incredible story of Abbey Curren, who has Cerebal Palsy, won Miss Iowa 2008 and started a pageant for little girls who have special needs. To hear Curren speak about her own journey and the responsibility she feels towards other girls with special needs is a testament to hard work, perseverance and living a life in which you are grateful for all of the blessings you are given. It is both heartbreaking and heartwarming to hear each of the featured contestants journey to the pageant. If you watch it-- you might want to have a box of tissues close and I dare you to try and decide which girl you hope wins the pageant--as this documentary illustrates-- they are clearly each winners in their own right.

Abbey Curran- Miss You Can Do It Founder. 

Being "The One"

Did I want my husband and my parents to watch Miss You Can Do It all together for selfish reasons? Kind of. Sort of. They are each (along with so many other family members and friends) part of our little community that helps us out on a daily and weekly basis. That being said, I try to never complain and to never make a "major" deal out of our daily lives, but there are times, when I just wish someone in my little circle of life knew what it was like. I wish they could be me for one day and understand why there are times when I am too tired to talk. Too tired to make dinner. Too tired to be the mom/friend/daughter/person I wish I could be every day. There are days when I just wish someone else understood what it is like in our house being "The One."

I stopped working after 10 years of being an attorney to be The One. The One who takes Joey to every appointment. The One who keeps track of every Explanation of Benefits. The One who tracks how much of our insurance deductible we have hit (Joey maxed out his in January- a new record). The One who crawls on the floor of the hospital trying to encourage Joey to take a step in the gait trainer while his therapist helps move his legs. The One who has post it notes and lists of appointments to make, appointments to change and schedules to adhere to. The One who takes notes and tries to follow through with Joey's various goals. 

The One who tries to help him not cry when he gets on what must look like a very big horse to him. The One who dries his tears. The One who tries to only go to places that are stroller-friendly because my shoulder and hip are getting so very tired and sore from carrying my handsome and wonderful 32 pound little man. The One who tries to keep her chin up and not cry when I see him struggle. The One who tries to balance her time between a very active 4-year-old and a 2-year-old. The One who tries to not feel guilty about not giving Tommy enough time because his younger brother simply needs more time and attention. The One who sometimes lies in bed knowing that the minute my feet hit the ground it will be non-stop until bedtime. 

The One who tries to stay healthy and fit and get in exercise. The One who tries to also know when to say no and when she needs to just take a break. The One who doesn't want to be treated differently, but who also wants people to get it. The One who wants Joey to be included in any and every thing, but who sometimes struggles to figure out how to make it work for him. The One who has to decide if an outing is too hot, too loud or just too difficult for Joey. The One who has to sometimes throw caution to the wind and not worry about Joey getting sick so he can have fun with all the other kids. The One who tries to stay calm with every appointment. The One who prays at night for strength...for guidance...for understanding.

The One who new at 13 weeks into the pregnancy that she was carrying a baby who has a syndrome that about 90% of the time is aborted when parents find out pre-natally that their child has Down syndrome. The One who had no idea how she would ever be patient enough or good enough to help care for a child who has extra needs. The One who still isn't sure some days how she can get everyone through one more procedure and one more surgery. The One who loses track of things sometimes despite all efforts at keeping it together. The One who sometimes just wishes that SOMEONE and EVERYONE could be The One for One day just to understand and just to be in these shoes and truly understand what it means to be The One.

At the same time, I don't ever want anyone to feel bad for us, to feel pity for our lives or to look at us as poor things. I just want to let the world know that I love our children so incredibly and very dearly, but there are days that I am sometimes tired and there are days that it is sometimes hard being The One.

In what area of your life are you The One? Your job? Your home? Your school? How do you cope with it when you wake up not feeling like being The One? How do you explain to everyone else in your life what it is like being The One?

Whoever is The One in your life...maybe give them a hug today. Send a note. Go easy on them. Everyone is just trying to do their best.

Happy Tuesday!!!

2013 Northeast Ohio Buddy Walk Info

Our local Buddy Walk is August 17 at Progressive Field. Ninety-three percent of the money we raise stays locally in Northeast Ohio. Our local organization, The Up Side of Downs, is a wonderful organization who helps everyone from expecting parents to parents helping their adult children with Down syndrome transition into the world of living independently and to working. This organization has been a source of comfort and support since we were pregnant with Joey-- they are awesome!

Two quick notes:

1. On-line team registration ends this Friday, July 19th-- visit this link to join Joey's All Stars Buddy Walk team.
2. Joey's All Stars (aka Super Joe) T-shirts are available to order until Monday, July 22nd. 

T-shirts are available as follows:

• Ladies Tank Tops are a $17 donation (cost to make is $12-- $5 donation to the team) and available in S, M, L, and XL
• Regular Adult T-shirts are a $10 donation (cost to make is $6-- $4 donation to team) and are available in S, M, L, XL and XXL
• Youth T-shirts are a $10 donation (cost to make is $6-- $4 donation to team) and are available in S, M, L
• Long-sleeve technical tees are a $20 donation (cost to make is $15-- $5 donation to the team) and are available in S, M, L and XL

This year you can pay for shirts with cash, check or Pay Pal. If you would like order a shirt, please email here and state size, quantity and type of shirt.

Hope to see you on the 17th for this awesome day!!!

"Your Son Has Helped Other Children"

Those are the words Joey's eye surgeon told us at his follow up appointment last week. He said he was sorry that Joey had to go through 3 eye surgeries this year, but then he said that he had learned so much from Joey's case and that Joey's various eye issues have "helped other children" because he will carry those lessons with him through the rest of his career. He said that each child and each surgery he performs helps him learn and that the uniqueness of Joey's case would be especially helpful to future cases and patients.

His words meant so much to us. It was a nice way to wrap up what has been almost 40 various trips up to the Cleveland Clinic Cole Eye institute in the past year. His words reminded us that sometimes Joey's journey is much larger than just Joey or our family- it goes beyond that. It goes to the other children his doctors treat, it goes to friends and family. His little life has grown beyond just us.

It Wasn't Brown Syndrome!!!

We found out after surgery that Joey does NOT have Brown syndrome! His surgeon was so shocked because he was convinced that Joey had it that he tested Joey's right eye 5 times and each time the eye moved seamlessly. At that point, they moved on to Plan B, which was to go back into the left eye (for the 3rd time) and operate on the upper muscle and try to tighten it to stop it from wandering and pulling way up to the left and off the grid.

Joey was the first case of the day and for the first time ever he came out of anesthesia with much less hoopla and anger.  He was much more relaxed and calm. Is it because this was the third time? Maybe because he is older? We weren't sure, but things seemed to be easy, breezy, peezy (as Tommy says) as we were able to head back home to Akron early in the afternoon.

WHY CAN'T HE BREATH???

Easy, breezy, peezy didn't last very long.  By Friday night he was coughing and having some trouble breathing. On Saturday it was worse. On Sunday, while he was napping he was coughing, so I went in to see him and he was literally foaming at the mouth because his airway was so restricted. I picked him, frantically called Tom who had gone into work and then Joey vomited all over me and was able to breath again. For a split second I thought about calling 911-- I'm not sure why I didn't. I always have that fear that I am being the crazy mom. Do you ever feel like that? How do you know when to make that call? How do you know when to go to the ER?

What's up, Doc? Are we good here?

By the time his follow up appointment rolled around he had started to breath better, but had us scared to death. We have slept with all bedroom doors open and the monitor volume on since the surgery and there have been a few nights where we brought up the old pack and play and had Joey sleep in our room with us. The funny thing is how big he looks in the pack and play! 

Joey kicked off this week by refusing to cooperate during PT on Monday morning- I mean just refusing. It was one of those embarrassing refusals. The kind that make you feel like a failure as a parent who cannot "control" or convince her child to comply. I will just put this out there-- therapy is AMAZING for Joey, but it is a hot, stressful sweaty mess for me. I worry about him being a good little student. I worry about him doing well. I worry about being there on time. I worry about what we have to get to next. Monday was no exception, Joey was stubborn, he was crying, he would just lie on the ground and put his head in his little hands. "Oh for goodness sake, Joe," I kept thinking to myself.  "Just do it already."

As the day progressed his attitude and spirit declined instead of improving and before I knew it his temperature was 102 degrees. Ugh. Why had I been so hard on him? Why had I been so annoyed and disappointed in him during therapy? Here he wasn't feeling well and was burning up.

The fever has lasted for three days now and Super Joe just isn't quite himself. 

He napped from 1pm until 6pm on Tuesday and I finally went in and woke him up. He has been lying on the ground, falling asleep, crying and has not been himself.

We went into the doctor on Tuesday and he tested negative for the Strep Test and his lungs sounded pretty good, so they sent us home with a prescription for a chest x-ray and a CBC work up. 

Today we had his ENT visit because one of his tubes has fallen out. Based on the past 8-12 weeks of continual sickness, his enlarged adenoids and swollen tonsils and his reactive airway disease, his ENT has decided that in the next 2-3 weeks we need to get Joey in to have his tonsils and adenoids removed and to have his ear tubes replaced.

The key will be getting Super Joe healthy enough for this to happen.

Then, post surgery, his doctor wants him to not to do any therapy for 2 weeks following the surgery. Ugh. No PT, OT, Speech, Horseback riding or swim therapy.  UGH. UGH. UGH.

Therapy brings tears out in both of us. Joey cries through his discomfort and through being pushed to new levels and past his limits. I try to hold back tears and hide them as I argue with myself and tell myself not to save him, but to let him work through it because it is good for him. As a Mama Bear and a Warrior Mama-- I want to save Joey. I want to make life easier for him, but therapy and all of his various procedures are just necessary parts of our life right now that will all help make his life easier and better in the long run. 

Do I want him to miss 2 entire weeks of therapy--NO!  It stresses me out to even think of it, but if it helps Joey to feel better and be able to stop being sick all of the time, then it will be worth it.

Although his various appointments and therapy can be trying and can be tough-- we are always grateful for the amazing therapists and his amazing medical care. These are the people who are always looking for the best way for Joey to learn, the best way to keep him interested, the best way to bring out the best in him. I see Joey's therapists more than I see most people and they have become friends and confidants.

How do you help your kids or your family push through the hard times? Do you ever want to save them, but know you have to let them learn? How do you cope?

Have you seen the new HBO Documentary "Miss You Can Do It"? The next blog post will be about this new documentary.  Wow. It hits home in so many ways. Watching these families and their journeys and their children's journeys....all I can say is, wow. 

Hope you and your family have a wonderful Fourth of July!!!