Appointments and Updates....

It was/is and will continue to be busy around here. I just want to write an update so all who want to know, can know what is going on with Sir Owen.

November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).

December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.

We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.

This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.

It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.

Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.

That's all I have for now.

For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf

Dear Caleb,

Dear Caleb,

Now on to you Twin B or Thing 2. Words cannot describe how happy you are! You wake up with a smile. You go down with a smile. You are so happy. It warms my heart to see you. Just about every time I look at you, you have a big, toothless grin for me. Your blue eyes sparkling. It is just pure joy to look at you. And, you look like mommy. Which is special to me.

You are an explorer. Since you have learned to move, you want to see everything. I say move because you are not quite crawling, yet, you make your way around an entire room, down the hall and can go just about anywhere you want. The only thing that stands in your way is your need to touch and taste everything that you pass. You scoot. Kind of like an army crawl. You find something to chew on and peek over at me, and give me this great big grin, like you are discovering the world. And you are.

You are determined. You want something, you see something and you figure out how to get it. You are resourceful.

You are funny. You have a sense of humor. You laugh at things. You laugh in the most adorable way. Its loud and giggly. I love it.

It's not easy being a twin and it's specifically not easy being a twin to someone who has disabilities. It may seem at times that we need to concentrate on Owen. We take Owen places and leave you home. I don't know what you think, but the way you look for your brother when he is gone, tells me that there is a connection there. I wonder if you will take care of him.

You kiss me. With your big open mouth and you know what you are doing. I love it, even with all the spit!

Every night while I rock you to sleep, you reach up and try to touch my hair. Then after I lay you in your bed, while your eyes are closed, you reach back for your blanket, grab a hold of it and snuggle it to you. I wish you would stay this little forever.

You are already smart and mischevious. I already know that you will be the most trouble of all when you are a teenager. I see the head-strong, determination and charming smile and know that we are in trouble! I can just see the smile you will give me when you are getting in trouble later in life.

You are so chubby. You have rolls on your thighs, rolls on your arms, chins, a roll by your ankles and they could not be more adorable.

You have no teeth yet and you don't say ma ma or da da. You do say things. Mostly "Agoo." I am not sure what it means but you are absolutely delighted when you say it and so am I.

You love, love, love to eat. You say "mmmmm, mmmm" when you want food and like almost everything. You aren't fond of chicken. Neither am I. Grammy taught you how to say "Ahhh" and open your mouth when you want another bite. You open your mouth wide and scream "AAAAAA" with this high pitch squeal. It's hysterical.

I cannot wait to continue to know more of you. I can't wait until you can tell me all the reasons for those smiles. I love you Caleb.

Love, Mommy

Dear Owen,

Dear Owen,

Since you are Twin A or Thing 1, I figured I would write to you first. I write a blog and I write a lot about my boys and probably most often you. One day I will print all of my pages and put them in a book for all my boys to see. From time to time, (or all the time) I wish I could freeze time and capture moments forever. You will notice I take a lot of pictures of you guys, well that is one of my attempts to do that. This blog is the other. You and Caleb are so cute and lately I see so much of your personality forming and shining through. I just wanted to take a minute to write to you and tell you all about yourself now.

You are so handsome. You look so much like your daddy, but with darker hair and dark eyes. Your eyes are so special. From the moment I looked in them, I knew that you were amazing. You were just born and I had no idea what was going on, but I looked at you and it was almost as if you were telling me, it will be alright. The NICU nurses saw it too. Your whole family did. So many people told me right off the bat that you were wise, they could tell by looking in your eyes.

You are so forgiving and good natured. Each day you are tested. PT hurts, OT hurts. Doctors poke, prod and manipulate you. What you endure is not pleasant. Yet, you work hard every day. You take all they give and trust me baby, its necessary and for your own good, but its not easy. Yet, you find a way to smile after. To look at their faces and smile, as if to say, it's OK. I am so proud of you.

You have grown inquisitive or as I like to say "nosy". You want to explore. To touch, to grab. I can't explain how cute it is. All I can tell you is that watching you pull my hair, reach for a toy, play with a book is the most rewarding thing I have ever seen. When you were born you could not open your hands. I wasn't sure we would get even this far and after seven months, I now know how much farther we will go.

You love to laugh. It's at the silliest of things. Last week Gavin was playing with you and being silly and slapping his own face and you burst out laughing and giggled for so long. Then there was the giraffe at therapy. You found it hysterical! (This week, you cried hysterically at it, for unknown reasons). And then the colorful bear. Watching you laugh makes laugh. It makes me so happy.

Right now you want to move. I don't know what you must think about your limitations. I see you watching Caleb. I know you want to crawl. You have mastered rolling. I wonder often how you will get around. I used to wonder if. But I know you will find a way. You are determined. You have learned to make yourself heard. You used to cry softly. Now you wail as loud as you can and you talk just loudly.

You talk. Ma, ma, da, da, da, da. Lots more das than mas. But I will take it! And you have two teeth. You squeal. You make all types of noises and true to both sides of your family, you find yourself funny.

Owen Sedey, you are a remarkable baby and I cannot wait to get to know you better. I love you.
Mommy

The game changer

Owen is my game changer and my eye opener to how some people, including myself, live with children with special needs, or with ill children or even adults in similar situations for that matter. It changes everything. I once took for granted that all I had to worry about was whether I could pay my phone bill on time. I worried about all the "normal" things. Bills, work deadlines, keeping the house, so to speak. I thought I understood, being a mom and being a working mom, what stress was. I did not. My life was not stressful before. Even if I behaved as though it was because I had to work and juggle one child and deal with the house. I had no idea.

Now I worry about things like anesthesia. I worry about wheelchair access to our home. I worry about surgery and whether or not Owen will walk. I worry about his lungs. He has a runny nose right now with some congestion. If this moves into his chest, it could be a problem. I worry about medical bills and whether or not our insurance will cover it. I worry about medical appointments and how to fit them into my life as a working woman. I worry about making Owen gain weight.

And I worry about the normal things. The regular bills, work deadlines, if we have enough money for things. I worry about work and medical appointments. I worry about Caleb. I worry about Gavin. I just worry.

Part of that is my nature, the part that allowed me to worry about things like "keeping the house." The other part is now a real reality. I was reading my news feed on facebook. Every other post was from someone who I am now friends with because they have a special needs child with a condition similar to Owens. Between their updates there would be updates like "I can't decide what to have for lunch" or "FML, work sucks." I am not knocking those people. Work sucks and you don't know what to eat. Understandable situations. But now, what I read between those posts now are things about trach tubes, spine appointments, casts, and respiratory issues. And I realize that this was a game changer. Life went from 'I don't know what to cook for dinner' to casts, respiratory issues, and spine appointments. Not just for them, but for me too. I am one of them now. Owen is. We are as a family.

I am new to this. They have years under their belts. As I cried this week about Owen having to be put under and deal with all my fears regarding that and the "what if something goes wrong...", I realized that they have been through this a million times already. I felt sick the other day as we are discussing our upcoming surgeries and the order in which we will have them. We talk about Owens little body as if its a project or a puzzle to be done. I cried for Owen and all that he will go through. And their kids have already gone through it. The surgeries, the hospital stays, the recovery.

Life is different now. Seems so silly to have been such a worrier before. Seems like such a waste of time.