Ch-ch-ch-changes

This week has been super busy. Everyday was packed with school (!!!), appointments, and meetings, and that was just for the kids and me. Grant was gone for most of the week with school during the day and rehearsals at night.

Monday morning Maddie had her 6 month appointment at the Down Syndrome Center (DSC). I am always anxious about these appointments, and I am so in my head when they happen that I am not so good at paying attention to much else. During the appointment, the nurse handed Aiden a paper measuring tape that she had used to measure Maddie's head circumference. Apparently he asked me if he could wrap it around his neck to measure it, and I replied, "Ok, Honey!" Luckily, Grant and the nurse were paying much more attention than I was and didn't allow him to get even close to doing this. Of course, normally I would never have allowed this, but I'm just so wrapped up in everything that's going on at the DSC that I can't focus on much else.

The rest of her appointment went really well. She is gaining weight like a champ and according to their calculations, she is in the almost 50th percentile for girls with DS. We have been having problems with her feeding recently. She has been having problems eating her baby food and has been choking and gaging during feedings and even afterwards. The pediatrician recommended that we take her to get a feeding evaluation and a swallow study (cookie swallow). He also recommended that we get an Occupational Therapist (OT) and Speech Therapist in through our Early Intervention (EI) services. We have scheduled the cookie swallow and feeding evaluation for October 11th and then have a follow-up scheduled for November 11th. I am waiting to hear back from our EI coordinator about the OT and Speech Therapist, but should hear back sometime in the next week or so. It's a little overwhelming to be having 4 therapists in our house every week, but I'm hoping OT and Speech are temporary.

Tuesday, Aiden started preschool. For months I have been both excited and anxious about the start of school for him. Fortunately, they encourage parents to stay with their kids the first full day of school and to take "coffee breaks" throughout the day to ease the kids into separating from their parents. Really though, I think it's more for the parents than the kids. So after taking a "coffee break" on the first day, I went up into the observation room they have, put on the headphones and listened and watched as Aiden played the rest of the morning with all his new friends. He did a great job and appeared not to miss me at all. He did have some trouble the first day listening to his teachers and he really wanted to follow a little boy who was kind of a trouble maker, but all in all, he did a great job! I was so proud. He enjoyed it so much that when I came back into the room, he started crying because he wasn't ready to leave.

On Wednesday I thought that I would be able to just drop Aiden off and leave, but the observation room is so addicting that once I got up there to check on him, I didn't leave. I am amazed at watching this little boy who has grown so much from this tiny baby I once had. He is so kind and gentle to his new friends and always invites them to play with him. He doesn't like it so much when other kids butt in and take what he's playing with, but instead of having a temper tantrum, he tries to redirect them to something else, or if he's really angry, he lets the teacher know. On the first day I didn't cry at all, but on Wednesday, when Aiden told his teacher he had to go potty, then went to the bathroom, pulled down his pants and underwear, went potty, wiped, pulled up his pants and underwear, and washed his hands all by himself, I couldn't have been more proud! I almost lost it right there and then. Again, at the end of the day, when Aiden saw me, he started crying because he wasn't ready to go home. I think I had prepared myself for him to cry when I left, but I wasn't ready for this. His teachers are going to think I'm some horrible parent if this keeps up.

Maddie also had PT Wednesday afternoon. She did amazing, as always! And, she even sat up for a whole 30 seconds by herself!! I've found that she is really enthralled by clapping, and that if I clap and cheer for her while the PT balances her and then lets go she doesn't even realize she's doing it herself.

Thursday, Grant took Aiden to school and I stayed at home with Maddie and got some chores done. I have to say, it was really nice having those 3 hours to get some things done around the house. Grant ended up staying the whole time watching Aiden in the observation room, too. So far, Aiden has not had a day at school with us not there, even though he thinks we're gone. Monday will be the first day. I'm hoping. It's just really hard to leave him though. I guess I'm worried that I won't be there if he needs me. Although, I'm not really sure what I would do if he actually did need me. It's not like I'd just barge into the room, but I'm afraid I'll miss something, too and he won't remember to tell me. I think this is definitely harder on me than it is on him.

Friday, there was no school, and when I told Aiden that he got to spend the day with me and didn't have to go to school, he cried. I thought that he'd be as excited as I was to spend the day with me, but he wasn't, he just wanted to go back to school. Poor Mama.

Maddie had her Developmental Therapist come in on Friday, and I was so excited to tell her that Maddie has started saying, "Buh, buh, buh"!! Her little voice is so sweet and I can't wait to hear all the wonderful (and not so wonderful) things that she will eventually say. The next thing we will work on are her "m" sounds and "d" sounds. I was so ecstatic to hear the "buh", I can't imagine how I will feel when I hear the "ma" sound come out!

Maddie has also decided that she really enjoys having her Daddy sing her to sleep and takes advantage of having him home to put her down as often as she can.

Next week is just as busy as this week was, but luckily it won't be as new. Hopefully, I'll be able to leave Aiden at preschool this week. Maddie and I have a lot of girl time that we need to start enjoying!

Meredith and Ryan's Baby Shower

For the past few weeks, I have been planning and prepping to throw a shower for my dear friends who are due in October with their first baby, a boy. When I found out that Meredith and Ryan were pregnant, I was ecstatic for them! The way they interact with Aiden and Maddie, I just know they are going to be wonderful parents to their sweet baby.

I knew immediately that I wanted to throw a Children's book themed shower for them, which happened to fit perfectly into their nursery scheme which is classic Winnie-the-Pooh. We decided to have all the guests bring a children's book with them as their card and go in on a bigger group gift. Everyone did a great job picking out books and I think Mer and Ryan have a really great start to their library. They also loved the video camera we got for them!

I made all the decorations and food match the book theme and it turned out great! I made burp cloths out of Winnie-the-Pooh and yellow polka dot fabric and used it to secure the diaper cake that I made also. For the menu, I made: green deviled eggs, ham and cheese sandwiches (Green Eggs and Ham), a blueberry salad (Blueberries for Sal), cheese plate (The Stinky Cheese Man and Other Fairly Stupid Tales), vegetable platter (The Vegetable Alphabet), fruit platter (James and the Giant Peach), honey BBQ chicken nuggets (Chicken Little), chocolate chip cookies with milk shooters (If You Give a Mouse a Cookie), rainbow goldfish (The Rainbow Fish), and vanilla bean cupcakes with buttercream frosting in the shape of The Very Hungry Caterpillar.

Here are some pictures:

At one point in the shower, I stopped and looked at everyone who was there and thought about how far we had come and what we've been through together as a group. There have been so many highs that we have celebrated and a few lows that we've leaned on one another for support through. New people have come into the group, and old one's have left, but belonging to this little community is such a privilege. I thought about when we first moved here and how we would go out and party like rock stars as a group, and now we get together and we're swapping babies, telling stories, and leaving parties early to tuck our sweet littles into bed. We don't get together nearly as often as we used to, but the progression has been so nice. And, as we start our 5th year here, it's wonderful to see how much we've grown together as a group. I'm so lucky to have these people to laugh with, learn from, and lean on. And, as Meredith and Ryan start a new chapter in their lives, I feel so lucky to be a part of that with them. Congratulations again, guys! I can't wait to meet the newest addition to our little group, and to your family!

I never want to forget...

There are times that something happens and I think I'll never forget that because it's too cute/sweet/funny/etc. However, I'm afraid that as time passes I will start to forget. When Aiden started talking, we had a list of words that he would say and what they meant. For instance, "meatmoe" meant oatmeal, "k-bop" was ketchup, but as I write this, those are the only two on the list that I can remember.

This evening, as I was singing Maddie to sleep in her room, Aiden came in and whispered to me, "Mommy! Are you ok?" I said, "Yes." He replied, "Ok, if you need my help, just come and get me, I'll be out here." I never want to forget how sweet and genuinely concerned he was when he said that.

The other day as Maddie was swinging in her swing, Aiden ran over, stopped the swing, hugged Maddie and whispered in her ear, "I'll always be with you Maddie."  and continued on to play on his own. I had to ask him what he said to her because I wasn't sure I heard him right since he was whispering. My heart melted. Aiden will never be able to know how much it meant to me for him to say that. He will be the best big brother Maddie could ever ask for. I never want to forget that.

And, I never want to forget how special the bond is between Aiden and Maddie right now. I'm sure in the near future they will be arguing and fighting and I will inevitably have to break them up from all of the fighting, but right now... right now they were meant to be together. The way Maddie looks at Aiden like she is absorbing every movement he makes is amazing. The way that Aiden can make Maddie smile some of the biggest toothless grins I've ever seen, is so special. They light each other up, and I am so lucky that I get to be a part of that.

SWAGGER WAGON

I know, I know. I haven't been very good at posting lately. I promise to update soon with everything that has been going on. Until then, here is a little video that a friend sent to me. I thought it deserved a spot on the blog.



By the way, Aiden is now going around singing his own version of "Swagger Wagon", and needless to say, I've now adopted the name for our mini-van.

The Professional Family

So I realized shortly after my last post that I unintentionally left it as a cliffhanger. Sorry for the confusion. After Maddie's echocardiogram we met with the doctor and she told us that the flap in Maddie's heart had closed, there is no longer a hole and that her heart looked perfect. She does, however, have a small murmur, just like her Mama and big brother, but it's nothing to worry about. And, this morning, I heard back from the Down syndrome clinic that Maddie's thyroid levels are normal. Yay!!

In other big news, we traded our car in for a minivan. That's right, we are now the proud owners of a 2007 Chrysler Town and Country. Grant couldn't be happier about having a minivan. I, on the other hand, am still adjusting to my new "Soccer Mom" role. I mean a minivan is serious stuff. There's no joking around. We're now a Professional Family, this is what I do for a living. And, I can't really be the young, hip, Mama I want to be while sporting a minivan, no matter how many times those Toyota Sienna commercials try to tell me otherwise. I think I may be taking this harder than I did turning 30.

Don't get me wrong, I like the minivan; there is a LOT more room, so I can tote my double stroller and have room for groceries, it has heated, leather seats, the doors open at the touch of a button, there's a built in navigation system and DVD player with wireless headphones so we don't have to hear Cars playing for the millionth time on long road trips, and all the seats fold nicely into compartments within the van itself. It's made for the Professional Family, to have every possible extra thing you could need to make it easier to schlep kids to and from places. I just wasn't ready to be a Professional Family yet, and didn't see the minivan coming anytime in the near future, but here we are.

Recently, Aiden's been demanding a little more attention than normal. I think he's feeling a little neglected because we've been so busy lately. What he needed was a little time all to himself with one of us. Unfortunately for me, Grant usually gets to be the one to do this with him since Maddie still needs me so much. Oh, what I wouldn't give for a little one-on-one time with my Buddy! But, I was SO happy that Grant was able to take him out today to play in the grass by the Cathedral. Plus, it gave Maddie and I a little one-on-one time, too.

He came back covered in dirt, and clearly had a great time with his Daddy! I can't wait for a Mommy/Buddy day. Hopefully soon!

Back to Cardiology and a Thyroid Test

Maddie had a follow-up appointment with the cardiologist today. We had to go back in February because she had some blueing around her lips, hands, and feet. After Maddie's first echocardiogram, the doctor told us she was 99% positive that she had a flap in her heart that was supposed to close after birth and that hers hadn't done that yet. She also told us that most of the time the flap fuses shut on its own, and other times it doesn't. Apparently, there are adults walking around without the flap fused shut. She wanted us to come back when Maddie was 6 months old so that they could take another look and double check that it wasn't a hole in her heart.

I was pretty positive, going in, that nothing was wrong. Since her first appointment, she has not had any of the blueing around her mouth, hands, or feet. She also has not been having any other symptoms that have lead me to worry. We have been so lucky this far that her heart has not had any issues. For those of you who don't know, heart issues are common in children with Down syndrome, and many have to undergo surgery at a young age.

While I was at the Children's Hospital last week getting Maddie's blood drawn for her Thyroid test, I noticed a sign for The Sibling Center. Apparently you can drop off siblings ages 3-11 at the playroom for up to 2 hours while a patient is being seen. I wish I had known about this service earlier. Last time we took Aiden with us and it was extremely stressful trying to keep him entertained during the appointment. This time it was wonderful! He felt like he was getting to go do something special while Maddie had her appointment, and he didn't have to sit quietly while we talked to the doctor. Even though the appointment was longer than the 2 hour playroom time limit, it made him much more cooperative to come back and sit for the remaining few minutes.

As for Maddie, she did an amazing job! She ate during the first part of the appointment and then fell asleep during most of the echocardiogram. If there were a room in the hospital that she were going to sleep in, this would have to be the first choice. The lights are low and calming, it's warm, and Sesame Street was quietly playing in the background. During the part where Maddie was awake, she patiently stayed still and smiled so the technician could get all the pictures of her heart she needed to. She is such a good baby!

As for the thyroid test, she did just as well during this appointment as she did with her Cardiology appointment. I was afraid that she would cry as they stuck her with the needle, but she just smiled at the technician the whole time. Even the technician was surprised. She told me that usually they are the most disliked people at the hospital. Due to her constipation issues, there is a higher chance of that coming back positive. However, I feel extremely confident that her thyroid is easily manageable, but we won't know the results for a couple more days.

Here are just a few fun (and grainy... sorry) pictures of Aiden being a great helper this week. He sure does love his baby sister! And I think she's pretty in love with him, too!

6 Months Old

Maddie just turned 6 months old. I can't believe how quickly the first half of her first year has gone. 6 months ago as I prepared for Madelyn's birth, it never crossed my mind all the things that I would have to prepare myself for after her birth. I knew that she would be different from Aiden, after all, she was going to be her own little person. But, I was not prepared for the surprise I got. I'm not even sure I would have been prepared had I known then what I know now. It's been a roller coster of a journey with high and low points. It's amazing to me how different things are now, and how well we have melded together as a family. I never would have thought 6 months ago that I would have reached a point of peace with Maddie's Down syndrome diagnosis. But, really, it's not that big of a deal anymore. So I have a few extra appointments a week with her. So she doesn't do things at the same pace as other kids. So I have to go to the Children's Hospital a little more frequently. It's not as devastating as I thought it would be. And, just sayin', the new Children's Hospital is really nice. I'm lucky they moved right before Maddie was born, the old one was nothing to write home, or rather blog, about.

It turns out that as a parent you are always going to worry about your children, whether they have Down syndrome or not. And there are absolutely no guarantees that your children will always be ok. You hope for the best and try not to think about the worst. And, when you hear one of the worst sentences you think could ever be uttered, you change your view point. Down syndrome is not the worst thing to ever happen to our family. It's one of the best. It has brought us closer as a family, Grant and I closer as a couple, made us more sensitive to the needs of others, and opened our eyes to a whole new community of people. People with hearts as big as an ocean. People that I feel a sense of camaraderie, admiration, and belonging to before I even meet them. It's an amazing feeling.

It's not always easy, for instance when I think about the night she was born, I still have the intense feeling of all the air being sucked out of the room. And, even though I know it's going to happen, I can't help but be a little jealous when a friend's baby hits a milestone before Maddie, or hold my breath before a doctor's appointment waiting for the other shoe to drop, because chances are it will. But it only takes looking into Maddie's beautiful, big, blue, eyes to know that things will be ok, just as I did on the night she was born. She is still the baby I fell in love with while I was pregnant, and still my little baby girl. She fills me so completely with a love that I never knew I would be able to feel. It's like I've been waiting for her and her brother my whole life and now I feel complete.

So, with turning 6 months old, comes the 6 month well-baby check-up. We timed her appointment with Aiden's 3 year old appointment so that we didn't have to go back twice. Maddie weighed in at 12 pounds even, 24 inches tall and in the less than 3rd percentile on the height and weight chart. Other than being teeny tiny, everything checked out! She did have to get some vaccines, and they caused her to have a small fever the next day, but it wasn't a big deal. Aiden did just as well as Maddie and is in the 10th percentile for his height and weight. What can I say, we just have small children!

In other news, Maddie had her Developmental Therapist session this week and has hit all of her developmental milestones that we set out as goals for her. Which means, it's time to re-eveluate her and set some new goals. I remember when we started all of the therapy with Maddie thinking that it was going to take forever for her be able to perform some of the tasks, but here we are, and she's just moving right along!

I can't wait to see what amazing things happen in the next 6 months! It has been such an amazing ride so far, I know it will only get better from here! Happy half birthday sweet baby girl, I love you!