Medicine Free!

Russell's cardiologist is happy with how he is doing. Dr. Hesslein stopped the lasix so we are medicine free! Russell is still on oxygen and probably will be for awhile but we don't know how long for sure. We go back in six weeks.

Evaluations

Thursday we had the early intervention group, Wonderland, come to the house and evaluate Russell for different areas of development. It is one the best things you can do for a kid that you suspect will have developmental delays. I'm not entirely sure how exactly they help develop a baby except apparently they play a lot so we not supposed to get mad when it looks like they aren't doing anything (read it in a book). Russell is at a less than one month old developmentally. We aren't supposed to take that information to heart because he is so young.  It's hard to know what is a true delay and what is normal for a kid his age, especially one recovering from heart surgery.

For example, he didn't always follow the object in front of him (except his bottle, of course) very well. It would take him a second to catch up to the object. The pediatrician said it was normal for his age but the therapists didn't give him points for it. (He was scored with a 1 or 0 on every category).

Within a hour of the two therapists leaving, Wonderland called to make an appointment.  They are coming on Monday with a speech pathologist and our Family Resource Coordinator.  Apparently, Russell is not "cooing" enough, at least that's why we think a speech pathologist is coming to see a 2 1/2 month old. Different therapists and the FRC will come to house once a week for a hour.  I will not be at the appointments. I have mixed feelings about it. I would like to be at every appointment he ever has but really, coming home for an hour appointment every week is not practical.  I would lose at least 3 hours of work. I am thinking about asking them to come in the afternoon once I get home.  If not, Matt can teach me the techniques to help Russell.

Friday we had a pediatrician appointment. Russell is 10 pounds 1 ounce! The pediatrician is very happy with how he is doing. He got a few shots and took them like a man. He only cried a little. :)

Both Wonderland and the pediatrician commented on how much energy he has. It is so great that he finally has energy and is moving around a lot.

  

A Little Behind

We went to the cardiologist this past Tuesday,  Russell now weighs 9.5 pounds! That means he gained about 10 ounces in 6 days. I think he is still a little behind for other babies his age but it is progress. We tried taking him off oxygen at the appointment but his numbers were still low. Russell doesn't have fluid in his chest anymore! He has a little residual leak in his heart but nothing to worry about.  Even if the small hole doesn't close, it is so small that it won't be a problem.

Russell is doing so much better since surgery.  He has a lot of energy and he can roll over. He rolled from his belly to his back at 1 month and now at 2 he can roll from back to his belly!

We have pediatrician appointment next Friday and a cardiology appointment the following Monday.

Travis is loving his baby brother. He is talking a lot, naming things that I didn't even know he knew. He has been able to spend a lot of time with my parents lately and he has had so much fun. Every morning he says, "Papa, Mama call." He manages to get my phone and calls my Mom all by himself.  Travis has also called my Father-in-Law using Matt's phone a couple of times. Yesterday he got to play with the hose and got soaked.  When Matt and Travis came inside, Matt told him to go get a shirt and shorts and pants. He came back with a shirt. Four times Matt sent Travis back to get shorts or pants. Four times Travis came out with a shirt.  Matt put each shirt on him.  Finally, Travis brought back a pair of pants.

As for me, I had a particularly hard week. There is just so many phone calls to make and appointments to go to. Then, there is work which has been hard as well. Matt continues to be strong enough to take care of me and the kids. Friday night my parents babysat the kids so Matt and I could go out. We went to a favorite restaurant in Ballard then walked around Green Lake. It was nice to be out without the kids. Yesterday, I got to hang out with my old roommate, Lindsey. It was really fun to see her again. Then Kit and Sally came over. (Kit is the guy holding Russell in the picture on Facebook). Overall, a great weekend and I'm feeling much better.

Video Take 2

The link to the video was linked to word "video" in the last posting. Here is the full link:

http://www.turtlebayandbeyond.org/2014/abortion/world-down-syndrome-day-at-un/

Video

My friend, Chris, sent this video to me.  It's very good, it was exactly what I needed to hear and it made me cry.

Finding God in a Mani/Pedi

A strange title, yes, but stay with me.

Yesterday, I had a "spa" day. Thanks to Mom and Mary, I got a much needed facial, massage, a manicure and a pedicure. It was wonderful. I was talking to the person doing my nails about Russell. She said to me that there is so many things in the human body that have to come together just right to make a "normal" person. I don't know if she believes in God but it confirmed for me that yes, I do. I don't believe for everything that has to come together "perfectly," and even when it doesn't come together "perfectly," can happen by accident. I put perfectly in quotes because there are different definitions of perfect. To me, Russell is perfect as my little baby. Society says otherwise due to his Down Syndrome. I'm trying to not let society sway me because I believe he is how God created him and God doesn't make mistakes.

It surprises me when people say that because they are scientists they can't believe in God. I think, of all people, how could they not? One day I was looking at my fingerprint at work (a little strange, I know) and  I got distracted thinking how amazing it was that everyone has an unique one. Plus, everyone has unique DNA but those that are blood related have similar DNA.  If a Master Creator didn't exist, how could that be? I don't believe it is random.

On a somewhat related subject, I think it would be rewarding and tough to be a hospital chaplain. Although I think, technically, Catholic women can't be "chaplains" per se but can be "ministers" but not the way most people think of the word minister. From my days working for the Archdiocese, I think Chaplains are ordained positions. I can't find a reliable source on the internet to confirm this. Regardless, I think it would be tough, especially at Children's Hospital where young, innocent children die often. It would be hard to console families, believers or not, and be able to give them answers as to why it happened. I don't know and I don't pretend to know.

Now, why did I write this post? You were probably looking for an update on Russell but it is not about him. That's why the blog is called "The Small Family" and not "All About Russell." Once the initial shock and overwhelmingness (no, that's not a real word but can't think of a real one) of Russell's health is over, I wanted to make sure that I included the rest of the family more.  I have tried to interweave them throughout the posts although they have been focused on Russell. 

And, I'm pretty sure that not everyone that reads this blog believes in God. I didn't write it to make a case for Him but as a way to get everything I've been thinking about out of my head. One of the great things about this blog is that I've been able to think about and come to some realizations about my feelings and beliefs about Russell's health and life in general.

Whether or not I am scientifically or theologically right, I still standby what I wrote. Because I'm married to an attorney, I have to put in the disclaimer that my views do not necessarily reflect the views of the Catholic Church or my husband. 

Discharged!

Russell was discharged yesterday.  He is still on oxygen. Each time they tried taking him off he did a little better but not good enough. There is hope that Russell will only be on it for another week but we don't know. We have a cardiology appointment next Tuesday and they can test the oxygen levels then.

Maybe Tomorrow

Russell had another chest x-ray today.  He still has some fluid but it is getting better. They also did an EKG and an echo.  EKG looked good, haven't heard about the Echo yet. The surgeon, Dr. Nuri came by while I was out and said the post-op echo (not today's) showed the pressure in his lungs was normal. He was also happily surprised by Russell's eating. There is talk that we might go home tomorrow.  I'm trying not to get my hopes up. Russell may go home with oxygen but ideally not.

Although I wanted to thank Dr. Nuri for taking care of my baby, it was worth the trip out.  I got to meet with a good friend, Chris, who I haven't seen in forever. It was so nice to see him again. His wife and I are also good friends and got to see her a few weeks ago.

I'm pretty relaxed right now.  I pass the time by cross stitching and reading a book on Down Syndrome.