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.