Tuesday, January 27, 2009

My Little Guy

There is one other pretty obvious difference between Brennan and his siblings. When I say he's my little guy, I mean he's my little guy.

Brennan's sibling were skinny babies for about a month, after which time the rolls appeared in mass quantities. At 10 months, Brennan is still sans-rolls and has room to spare in his size 2 diaper! Here are the kids weights from their 9 month well-visits:

Jenna: 20 lbs. 4 oz
Tanner: 21 lbs. 4 oz.
Parker: 21 lbs. 9 oz.
Brennan: 14 lbs. 10 oz.
Without fail, when someone we haven't met before approaches and asks how old he is - their response to my answer is always "he's so small for his age." I'm never quite sure who I should tell that he has Down syndrome and therefor is predisposed to being smaller. I mean, does the person behind us in the grocery store check-out line really want to talk about Brennan's genetics? Either way, I actually love having a little baby for once. The others grew, and are continuing to grow, entirely too quickly.

Friday, January 23, 2009

Croup with a side of RSV

A couple of days ago, I was going to post about how healthy Brennan has been. At almost a year old, he has had nothing more than an occasional runny nose. And with three older siblings who have had fevers, runny noses, coughs and stomach bugs this winter, I thought it was nothing short of a miracle that our little guy had managed to stay healthy through it all. Well, yesterday morning, Brennan woke up with a fever of 101. The fever went down with some tylenol, so I thought we were in the clear. Then he woke up last night wheezing and with a barking cough. He also had a fever of 103. I gave him some tylenol and took him into the bathroom for a good hot steam, but neither helped. His fever didn't go down and he was still wheezing and coughing. So, we headed to our local emergency room at about 2:30. Ends up my little guy has RSV and Croup. So, they gave him some oxygen and a steroid shot to help relieve his inflamed airways. Luckily, this worked very quickly....however, after the steroid shot, we had to stay at the hospital for 3 hours so the doctors could monitor him. We finally made it home at about 6:30 this morning....just in time for the other kids to wake-up! Eric went into work a little late so that I could get an hour of sleep. Needless to say, I am one tired mom today. But, most importantly, Brennan is feeling better and hasn't had a fever, coughed or wheezed all day....I'm keeping my fingers crossed that it stays that way! And even when he's not feeling well, he's still REALLY cute!

Tuesday, January 20, 2009

The Convention

The National Down Syndrome Congress annual convention was held in Boston last summer. It was the first time in more than 20 years that it had been in Boston. Since we are only a 30 minute drive from Boston, and since it would probably be a long time until the convention was here again, I decided to go. By this time, my tears were gone and had been replaced with a complete and overwhelming love for my new baby. I was ready to learn as much as I could about how to best help Brennan meet his potential and knew that attending the convention was a great opportunity for both of us. At three months old, Brennan was one of the youngest babies there. So many parents ooo-ed and aahh-ed at him and many even asked to hold him. I'm sure he reminded so many of the parents of their kids when they were babies. It was so sweet. The convention was three days long and filled with workshops conducted by experts in various areas related to Down syndrome. The people who wrote all of the books I had been reading the past three months were there. I learned more than I had even hoped to learn that weekend. There were kids of all ages - babies, toddlers, up through teenagers and adults. There was a wide range of abilities among the people that I met, but I felt so proud of each and every one of them. I knew the amount of work and dedication it took for them to be where they were and I was full of pride and admiration. The only tears I shed that weekend were on my drive home after the last day of the convention. I had felt so at home, so full of love, so full of joy during the past three day.....surrounded by an amazing group of people who all share an extra chromosome. I feel so fortunate that the convention just happened to be held here last summer - otherwise, I don't know if I ever would have travelled to another part of the country to attend. But, after having attended once, I plan to make it an annual trip for me and my little man.

Saturday, January 17, 2009

Early Intervention

The main difference between Brennan and his siblings at this point is his low muscle tone. The best word I can think of to describe the effects of low tone is to say that he was "floppy." Where most babies lay with their hands clenched and near their face or chest, Brennan would lay with his arms laying flat out next to his side with his hands open. Through our state Early Intervention program, we have a physical therapist who has been coming to our house to work with him since he was about six weeks old. She comes over for one hour each week and works on strengthening exercises with him. She also gives me suggestions of exercises to do with him. I have been amazed at the progress he has made and I attribute so much of it to the help his physical therapist has provided. I do have books that I read that also offer suggestions, but having someone come to my house each week has been invaluable. And Brennan has always been such a trooper.....enduring countless hours of tummy time, working on the therapy ball....all without a complaint. He is truly amazing.

This is B at 2 months working on being able to lift up his head.

This is B at 4 months, propping up on his elbows.

This is B at 6 months, pushing himself up with straight arms.

Right now, we're working on getting the trunk of his body stronger so that he'll be able to sit independently...then on to crawling, walking, jumping, running. He'll definitely be on his own schedule as far as when he learns to do these things since his low muscle tone makes learning these things really hard work. I am, and will continue to be, immensely proud of each new skill he learns.

More Alike Than Different

Many people have asked in what ways Brennan is different from his brothers and sister. The National Down Syndrome Congress currently has a campaign whose theme is "We're More Alike Than Different." Through this campiagn, they are trying to raise awareness of Down syndrome and to let the general public know that people with Down syndrome really are more like other people than they are different. I have certainly found this to be true of Brennan. The only difference so far has been his low muscle tone (which I will discuss in a separate post). Other than that - he really is just like his siblings were as babies. In fact, he may just be the easiest, most content baby of them all. He rarely cries, sleeps well, eats well and is just a happy little guy. He has one extra chromosome, but he also has the same 46 as everyone else!

Thursday, January 15, 2009

The First Months

After the initial joy of having Brennan home and being together as a family of six for the first time, I started on the biggest emotional rollercoaster of my life. I cried more during those first two months than I had in my entire life. I was consumed with worry for Brennan and his future. I really thought I would feel sad every day of my life for the struggles that he may endure. I cried in bed at night, I cried driving the kids home from school, I cried when Eric called during the day to see how I was doing, I cried sitting on the couch with my mom holding my sweet baby. During this time, I spent countless hours on the internet.....looking for hope, I guess. I found this hope through the blogs of other families that have children with Down syndrome. The common theme was that they loved their kids unconditionally, that they were so proud of every accomplishment, that most of the mothers had felt the way I did at the beginning, but the sadness had turned into abundent happiness and joy. And their family lives seemed so normal.....kids playing sports, families going on vacations...all normal family things. So, one day, the tears stopped. I realized that Brennan was going to be fine....he would actually be better than fine, he would be happy and have a great life - with friends, interests, hobbies, and a family that loves him unconditionally.

Going Home

I went home five days after Brennan was born. Went home without my baby. Although I was looking forward to being back home with my husband and three older kids, I was so sad to be going home without my baby. Eric was still home on paternity leave at this time, so I was able to spend most of the next couple of days at the hospital with Brennan. My Mom would pick me up early in the morning and we would make the drive in to Boston to see my sweet Brennan. We would spend most of the day with him - then return home at night, at which time Eric would head in to see our little man. At this point, the diagnosis really didn't even matter - I just wanted him to be healthy and be able to come home with us. Two days after I was released from the hospital, Brennan was able to come home. Eric, Jenna and Tanner came to the hospital to join me in bringing Brennan home. It was a wonderful day. When we arrived home, my Mom and Parker were waiting for us and the sign that my sister had helped the kids make still hung from the mantle saying "welcome home mommy and brennan." The kids were thrilled to have their baby brother home and hugged, kissed and held him as much as they could. Smiles and happiness filled our home.

The First Days

Honestly, the first few days after Brennan's birth were somewhat of a blur. When we were wheeled out to a recovery room, the pediatrician came to talk to us to explain what led him to believe our son may have Down syndrome. He had told Eric in the operating room that there was a 50% chance he did have Ds. Upon further questioning, he said that he would personally say there was closer to a 98% chance based on the physical traits that were present (single crease across the palm of his hand, small, low set ears, a large gap between the big toe and other toes, upward slanted eyes, flat bridge of nose, and low muscle tone). Brennan had come into the room with us for only a couple of minutes, then was taken down to the NICU. It was so hard to hear these things about a son that I couldn't even hold in my arms. I wish he could have been with me, that I could have started to get to know him while we were processing this information. I asked Eric to go with our baby and then keep me updated. So, alone I sat, worrying about my newborn son and hoping that the pediatrician would be proven wrong in his suspicions. During this time, Eric called my Mom (who was at our house with our other three kids) to tell her the baby had arrived and also of his suspected diagnosis. I believe he called his family at this time, too. A couple of hours later, I was wheeled up to my room. It would be a while more until I could get out of bed and be wheeled down to see my baby in the NICU.

Eric came back to the room and said they had taken Brennan to run some tests. Then Eric got his computer out and started searching online to find out what exactly Down syndrome was. Our hearts were aching as we prepared ourselves for what the doctor's were pretty sure the blood test would confirm. Eric was truly amazing. He was sad at the very beginning, but the sadness was so quickly replaced with the love every new parent has for their child. Within hours, after learning the basics about Down syndrome and what it would mean for our son, he felt the same love for Brennan that he had for our other kids and reassured me that we would find the same joy in him that we do with the older three. He talked about what we love about our kids....their unique personalities, the hugs, smiles and laughter, their excitement when they learn to do new things - and he knew that we would love all of the same things about Brennan. Although my heart was still heavy with worry - I knew that he was right.

After going to check on Brennan again, Eric came back to our room and said that Brennan was having trouble keeping his temperature up and also having trouble keeping his oxygen saturation levels where they should be. So, he would be in the NICU until he was able to maintain his body temperature and oxygen levels on his own. They were also sending him for an EKG and echocardiogram to check his heart as approximately 30-45% of babies with Down syndrome are born with a heart defect which requires surgery to repair during the first year of life.

I didn't call anyone from the hospital. I didn't quite know what to say and knew for sure I wouldn't be able to say it without tears. My Mom came early the next morning to see me and meet Brennan. She cried a few tears with me, but they were for my pain and not at all for Brennan. She has always embraced and celebrated him and continues to have the most special relationship with him. It was her words, a couple of weeks after Brennan was born, that helped to ease my worry and sadness. She said "I think we all need to focus on all of the things he will be able to do, instead of thinking or worrying about the things he may or may not be able to do."

My sister, Shauna, was planning on coming to meet Brennan a couple of weeks after he was born. But, upon hearing of his possible diagnosis, she, her husband and their daughter packed up their car and headed to Boston to see us. Having them come up to see us in the hospital meant the world to me and I will be forever grateful to them for coming to see me when I needed them the most. When she walked my room, we hugged for what seemed like hours, tears flowing freely. She came bearing gifts for my new son....toys, clothes, and the most amazing book for me called "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives." It had the sweetest picture of a baby with Down syndrome on the cover and my tears continued to flow, knowing this was my baby.