Development

It’s been a long time since my last post. Partly because life is hectic and it’s hard to find time. And, to be honest, partly because I’ve been avoiding it. With Cooper not having any medical crises for a while, it was nice to not have anything specific to update everyone about. But, I know that people still want to know how he is. Which is sassy.

Coop is becoming much more independent. He is mobile now and loves to explore. He’s crawling all over the place, using a combination of styles. He’s fastest if he uses his “Mowgli-crawl” with his legs straight and his little butt up in the air. Lately, he’s been crawling up on his hands and knees more, which is good. Occasionally, he’ll get lazy and bring back his signature crawl, which looks like a swim or an army-crawl. This is when he drags his body along the floor with his arms and pushes with his legs.

He’s figured out how to pull up to a stand, and has just started to cruise, which is taking steps while holding onto furniture. Right now, that’s about as far as his interest goes when it comes to walking. He is not a fan of us holding his hands and trying to get him to take steps. That boy’s got a stubborn side, so if it’s not his idea, he hates it. He’s figured out that he has an opinion and how to make it known.

We’re making progress in communication, too. Cooper is understanding more of what we say every day. He will nod his head for yes and shake his head for no, and uses them appropriately. (If you want to see him shake his head no, try to get this dude to take a bite of apple.) He knows what bye-bye means, he waves, and he blows kisses. He’ll follow us from room to room when we ask him to (depending on his mood). He’ll bring us a fruit pouch from the cabinet if we tell him we’ll open it for him. He does not like to be told “no” any more than his momma does. And, he knows  what a cow says. Let me tell you that it’s the cutest moo anyone’s ever heard. That’s about the only animal sound he’ll make right now. Why try to roar when you have mastered the moo? He uses a sign for “more” and one for “all done,” he says dada and mama, and he’s been trying to say hello when he plays with his phone. We are about to start speech therapy, so I’m excited to see him add more words to his vocabulary.

I get a lot of questions about Cooper’s therapy. It’s with Early Intervention through the state of Illinois. Cooper automatically qualifies for services because of his diagnosis of Down syndrome, but there are a lot of kids without disabilities that qualify for therapy because of delays in certain areas of development. The fee is based on the family’s income and that family fee is the same whether the child gets one type of therapy or four (which is our new total). Cooper has been in physical, occupational, and developmental therapy since before he was 2 months old.  His therapists work toward our goals by playing with him with a specific purpose. He plays with toys and they get him to use certain muscles to increase his strength, control, and tone.

The therapists come to our house, which means the biggest challenge is just fitting sessions in with my work schedule. He has physical therapy once a week. Physical therapy is for large muscle groups and focuses on things like sitting, crawling, standing, and walking. He also has occupational therapy once a week. Occupational therapy is for smaller muscle groups, so they focus on things like holding, stacking, rolling, and feeding. Developmental therapy is twice a month and addresses his overall development including communication, motor skills, and social development (which has always been a strength of his). He loves his developmental therapist, doesn’t mind occupational therapy, and hates physical therapy most of the time. The things he does in physical therapy don’t hurt, but they engage muscles that are weak, which is uncomfortable, which means he’d rather not do it, which means he gets mad. Some days, it is just really hard to listen to him cry the whole time. Those are the days I end up boo-hooing right along with him.

One great thing about my sassy boy developing such strong opinions is that he’s becoming very affectionate when he wants to be. He’ll leave his toys just to crawl over and give us a kiss or lay his head down on us, then go right back to playing. That’s the best because it is 100% his idea.

My goal is to just soak up the extra time I get with him in this “baby” stage. I try to think of it like time has slowed down so I can really enjoy each part of his development. Would I be ecstatic if he could walk by his second birthday? Yes. But, I know that he will walk and talk and do it all when he’s ready to. And I can’t make him be ready to do those things. I can’t even make him eat an apple.

Breathe.

I’ve been pretty emotional as Cooper’s first birthday approaches. I’m sure most moms are. I can’t help but think about the progress we’ve made as a family. We’ve come a long way in one short year.

We had just a few hours of being normal first-time parents. I was in labor for about 21 hours. When Cooper was finally born, I had never been so exhausted. He was beautiful. I couldn’t believe he had so much hair or that it was blond! He was so tiny and adorable. I remember holding him for the first time and just thinking that it felt right. He was mine and I loved him.

Those next few hours were a blur. I could barely keep my eyes open. Our family and friends came in to meet him, and they all fell in love immediately. As it got later, almost everyone had gone home for the night. Scott and I were sitting in our room staring at our sweet baby. With everyone wanting to hold him, I hadn’t gotten a lot of time to just take him in. Then, I don’t even remember thinking it, just saying, “Do his eyes look like Down Syndrome eyes?”

Scott was caught off guard and understandably defensive. He said that he had no idea what I was talking about. He told me that he thought Cooper had my eyes (which are fairly almond-shaped). I took Cooper out to the nurses’ station so we could get some sleep, and  I mentioned it to them. They all assured me that his eyes were probably swollen from just being born. They said he would look different in the morning. I was so relieved. Who thinks that about their new baby? What is wrong with me?

The next morning, Cooper was having his hearing test, and I was getting ready to take a shower when Dr. Talsky came in to check on me. He had delivered Cooper but was not my regular doctor. After he asked about my pain and how I was feeling, his demeanor changed. He said that the nurses had told him about my questions about Cooper’s features. My stomach turned and my heart started pounding. Oh no. He told us that it wasn’t his place, but he wanted us to know that he had concerns, too. Cooper had many characteristics of Down Syndrome. He didn’t want us to be blindsided when our pediatrician came later that day. No no no no no.

I immediately felt like I was going to be sick. I take it back. I take it all back. I should have just kept my mouth shut. I was so sorry that I said anything. I felt like I ruined everything. Like if I hadn’t said anything, this would not be happening.

Scott and I just looked at each other. We didn’t know what to say. We didn’t know how to process this. Scott asked Dr. Talsky some more questions and I just walked into the bathroom and got into the shower. It’s like I thought I could wash away what he had just told us.

I couldn’t. I’m sure the people in the rooms around us could hear my sobs.

When they brought Cooper back to our room, I rocked him and cried. I told him over and over that I was sorry. I was absolutely devastated for him.

And I was angry. I could not believe these were the cards that my sweet baby boy had been dealt. Nature had failed him. I looked at the Down Syndrome like an awful disease that was attacking Cooper’s body. I hated that extra chromosome like it was a cancer. It had changed who Cooper would have been. It changed what he would have looked liked, what his personality would have been like. It put limits on his abilities. Just hours ago, we were happy and making plans for the future. Now, the future was absolutely terrifying.

It was an incredibly difficult time. We heard a lot of “God doesn’t give us more that we can handle” and “God must think that you and Scott are really special people.”Well, that’s great that He thinks we can handle this, but I think He’s wrong.

I hate that we were dealing with such sadness during such a happy time. I was so in love with Cooper and I couldn’t get enough of him, but I was shattered. I can’t remember where I came across it, but about a couple of weeks before I had Cooper, I read that when you have a baby with a disability, you have to mourn the loss of the baby you thought you were getting. I guess that’s what happened because weeks and weeks went by before I realized that I had made it through a whole day without crying.

Now weeks go by with no tears. Not that I forget that Cooper has Down syndrome, I have just come to terms with it. I still get angry. I still feel like he got cheated. But, our job as his parents, is to try to make sure that he doesn’t feel that way. We just have to love him and give him every opportunity to be fantastic.

I wish I could talk to that mess crying in the shower that day. I would tell her about all of victories we’ve had. Because there have been victories. Cooper has beaten a lot of odds. His heart is normal and completely free of abnormalities. There are so signs of vision or hearing problems. He recovered from both of his intestinal surgeries like a champ. He’s growing and gaining weight. He rolls. He sits up. I know now that he will crawl. He will walk. He will be potty-trained. He will talk.

He’s going to be okay. We’re going to be okay. It’s going to be okay.

Reinforcements

This past week, we had a playdate with some new friends from the Riverbend Down Syndrome Asssociation. I had really been looking forward to getting together with a fellow mom and her sweet little girl. While I know that it’s going to be a while before Cooper is going to be interested in playing with other kids, this was a pretty big deal for me. It took a long time for me to be ready to get involved with groups like Riverbend, because we had a somewhat bad experience with a volunteer from a different group early on.

After Cooper was born, it was obvious to our nurses that his diagnosis was a total shock to us. The day we were going home, one of them told us that there was a nurse from a different floor who had a daughter with Down Syndrome. Our nurse thought it might help us if we talked to this woman and asked if we would want her to pass along our contact info. We agreed.

The woman contacted Scott within the next few days, and we made plans for her to come over and talk to us. I didn’t know what to expect, but I remember being under the impression that she was coming as a person on her own. It turned out that she was on official business as a volunteer from an organization in the area. We sat down with her, and she started by congratulating us on our baby’s birth. She handed us a folder full of pamphlets with information on different groups and resources. The pamphlets all had pictures of babies or children with Down Syndrome on the covers. I was probably in denial; those people looked totally different than my baby. I shut the folder quickly. It sounds terrible, but I couldn’t look at those faces. I wasn’t ready yet.

There was a little bit of small talk before she began to tell us about her daughter, who was in elementary school. She told us about how her daughter had undergone multiple heart surgeries. How she was deaf and could only use sign language. How she had digestive issues, was unable to eat regular food, and had had a feeding tube her whole life. At this point, we had not had Cooper’s heart checked out yet. We didn’t know if he could see or hear. We had no idea whether he had health issues. Wasn’t this woman here to offer comfort? All she was doing was scaring us… She even gave us some pointers for when we would have to go to the emergency room at Children’s. That’s when I started to close off a little in my mind. When we have to go? Not if? When? Who says that we will ever have to go? Who says Cooper is going to be anything like your daughter?

She told us about all of the things that we would do with the organization. Cooper could be in parades. His picture could be in the calendar. We could take him to Down Syndrome Day at Busch Stadium. We would meet this person and these people and she could babysit for us. I felt like I was being recruited into a club that I did not want to be a member of. He doesn’t need to be in a parade because he has Down Syndrome. We have our own friends. I don’t need her to babysit. If we want to take him to Cardinals game, we’ll take him. We don’t need to wait for Down Syndrome Day.

She said that we would become advocates. That we would do fundraisers. That we would notice how often people use the word “retarded” as an insult and that we would point it out. She told us that we would have to fight for Cooper’s rights with doctors, with therapists, and in sporting groups and schools. I just thought: She wants me to be this warrior mom. Right now, besides feeding, changing, and holding Cooper, about all I’m able to do is muster up enough strength to breathe in and breathe out.

I couldn’t take much more, so I just ended up sitting wordlessly on the couch. Scott was gracious and talked for the both of us until she finally left. As soon as she was out the door, I said that I did not ever want or need to talk to her again. I did not like her and she did NOT help me.

Honestly, I was being a little bit of a brat. I know, now, that I was just not ready for anything she told us. I also know that she was really just trying to help. She just went a little overboard. The organization that she represented does a lot of really great things for a lot of families. Eventually, I ended up talking with their volunteer coordinator about our experience and she apologized profusely. She told us that the woman did a lot of things that they teach their volunteers not to do.

I’m mostly sorry that it took me so long after that meeting to be ready to reach out and get involved in any groups. I ended up choosing to go to a Riverbend Down Syndrome Association meeting and I’m so glad that I did. I haven’t been able to do much with them yet (with Cooper’s penchant for spending time at Children’s), but I can see that it is going to be good for us. We have a great support system of friends and family that I know that I can talk to anytime. But, it is really nice to be able to talk to someone who has gone through the same experiences or faced the same emotions.

We had a great time with our new friends and I’m looking forward to expanding our support system even further.
I mean, who wouldn’t want to be friends with this guy?

I am proud.

I have been especially proud of this boy lately!

Cooper had his 9-month check-up with his pediatrician last week and she was so pleased with him. He did drop a little bit on the charts as far as growth, but we knew that would happen with the surgery. She was glad to see how well he recovered, and very impressed with how well he is sitting and pushing up when on his belly. She said his muscle tone looked great!

His therapists have also been happy with his progress! Our developmental therapist said that Cooper was babbling more than the last time she saw him. She just kept laughing and saying that he’s so social and is figuring out how to get reactions out of people. Our occupational therapist was excited and encouraged with everything from his reaching for objects to his sitting independently for longer periods.

The follow-up with the surgeons was this week, too. They said his incision looked great.They were very happy that he’s had plenty of dirty diapers and no signs of infection. His belly is nice and soft . It’s clear that everything is finally working like it is supposed to in there. They gave us the all-clear to start him back on solid foods, which is excellent news.

I’m just so amazed at how resilient he is! Not only did the surgery not set him back like I had prepared myself for, but he is going full steam ahead with learning and getting stronger! He is just such a good boy. I am proud.

 

Cooper’s feature photo!

Down Syndrome Association of Greater St. Louis

Back home again

We came home on Friday! We are so happy that the surgery is behind us. It is unbelievable how resilient kids are! Cooper doesn’t act like he’s even uncomfortable.

He lost about a little over a pound in a couple weeks. He is still on a formula-only diet until we go to the follow-up with surgeon in a couple of weeks. I am really glad to see that the whole process hasn’t set him back too much when it comes to his development. He is sitting up well and rolling all over. Other than the fact that he’s gotten accustomed to being held and talked to (a.k.a. he got a little spoiled), he is acting pretty much back to his normal self. 

We’re just enjoying being home now! Thanks again to everyone that prayed for and thought of us!

Trooper

Today has been so much better!

Cooper is acting more and more like himself. He’s been eating 4 ounce bottles all day long. He’s sitting up for a little bit at a time and we’re getting some smiles. They took out his catheter, so we’re down to 1 tube (his IV). He’s just been getting Tylenol now; no more morphine. If everything keeps going well, we should be able to go home tomorrow afternoon. 

We think the worst is over.

What a difference 18 hours makes!

After a pretty terrible night, Cooper is feeling much better! His pain seems to be under control with mostly just Tylenol. They took his NG tube out this morning and he’s been able to have some formula. He’s definitely acting more like himself!

Surgery Day

Quick update on Cooper: The surgery went well.

He didn’t lose too much blood. His surgeon said they removed about 8-10 inches of his large intestines. They went in through his belly button for part of the surgery and through his bottom for the other. He has an IV in each foot. They have an NG tube in to suction out his stomach so everything can start to heal. That will hopefully come out tomorrow. He can’t have anything to eat or drink until further notice. He has a foley catheter in because of everything inside being moved around. That will stay in for at least 2-3 days.

He’s clearly been in pain and it’s difficult to hold him in a good position to comfort him. He’s on a couple different pain medications. After a rough few hours, he finally seems to be getting some restful sleep so we’re going to try to do the same.

Thank you to everyone for your prayers and thoughts! It really means a lot.

Day one

Cooper’s doing pretty well so far. The surgery is going to be tomorrow (Tuesday) around noon. He has lost about a pound and half in the last couple weeks. Fortunately, th
ey were able to put his IV in his foot instead of his scalp. Also, instead of using an NG tube to suction out his stomach, they are using a smaller more flexible feeding tube to clean everything out and they don’t plan on leaving it in much longer. He’s been allowed to have pedialyte all day and can have some until 6 am. He’s been in a great mood, all things considered, and he’s been cracking the nurses up with his faces.

In other news, he looks ridiculously cute in a hospital gown.