Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, November 29, 2012

Little piggy!

Apparently girlfriend loves spaghetti! She's tried it before, but just a few bites. Since we're planning on having it for dinner tonight, I made the sauce this afternoon and boiled Lauren a small portion of noodles so she could have it for lunch. She went to town! She ate the whole bowl and was kind of sad when it was gone!

P.S. Don't you love how her hair looks so crazy?! This is what happens the day after pigtails. Needless to say, she got a bath promptly after lunch!

Wednesday, November 28, 2012

Amazed

Today I am just simply amazed at how much Lauren has grown and changed since her birth.

How on earth did she go from this:
and this:
to this:
in just 9 short months? How is that even possible? It's almost like her hospitalization and surgery and complications were in another lifetime. Did it even happen? It's so crazy to feel that way, but I do. Finally! I felt like it would always feel so incredibly fresh in my heart and in my mind. And I know that sometimes it still will. That part of our lives will always be there. But I am just amazed that she is a little girl now. She loves splashing in the bath tub, sitting up on her own, playing with books, eating snacks, petting Grandma's dog. She saw herself in the mirror yesterday and her whole face lit up as she waved at the baby in the mirror. She danced back and forth while on her hands and knees and danced her head right into her stand-up toy, then laughed.

I look at her face sometimes and wonder if she's even real. Is this actually happening? She is such a miracle that I still feel like I have to pinch myself to make sure I'm really awake.

The feeling of wholeness that our family has right now is just wonderful and we definitely do not take it for granted. The kids and I trekked to the grocery store this morning. We played with trains, made breakfast and watched Pound Puppies. Lauren fell asleep in her exersaucer while Ryan pretended to sleep on the couch. All such every day, normal things that feel so extraordinary to me. I can barely believe this is the same life I had 8 months ago when Lauren was so sick. I missed Ryan so much my heart ached. I was so sad for my baby that my soul ached. And I missed my husband like crazy. The fact that we all get to be together leaves me in awe.

I am amazed.

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Guess who has a tooth?!

Lauren got her first tooth!!!!! I wasn't even remotely prepared for this and wasn't expecting it until way closer to a year or after. Kids with Down syndrome tend to get teeth later than typical kids. So when Lauren kissed me and then lovingly bit my nose I was quite surprised to feel something sharp! It looks like it's kind of in a weird spot so I'm not totally sure which tooth it is. Apparently kids with Down syndrome also get teeth in weird order. It's hard to tell which one it is since there's only one. Sheh as another one on the other side about to break through too. Now I know why she's been so fussy and chomping on everything lately!


I can't believe my baby girl is getting so big! I'll never see a little gummy smile from her again. Where has the time gone?! I was so excited about this I could barely sleep last night! Her very first tooth!!

My dad still calls me Spooky Tooth to this day. I had an extra tooth, both a baby tooth and a permanent tooth. My mom used to yell at him for calling me names, haha!

Ryan has been such a good boy lately that he got a Christmas present early!

Don't you love how he was hiding behind it? He saw this wooden farm train and loved it, so I got it for him. And then I promptly gave it to him as soon as we got home. He asked for it first thing this morning too! How do parents actually wait until Christmas when they shop so early?!

Also, back to the tooth. Do I need to brush it? I probably should remember this from when Ryan was a baby.

Sunday, November 25, 2012

Aaaahhhhh

I don't want this long weekend to end!!

Right now I'm snuggled on the couch, drinking hot chocolate and catching up on Pitbulls and Parolees. The kids are napping at my parents in preparation for Thanksgiving #2 at five oclock. 

This is the life!

I am still amazed on a daily basis that my life is how it is. When we got Lauren's diagnosis I was sure we were in for a hard, thankless and tiring life. It's definitly tiring- 2 kids in 2 years will do that to anyone. But its also enriching, full and awesome. And I absolutely love it!

Wednesday, November 21, 2012

Thanksgiving is upon us

Happy Thanksgiving!!! I'm thankful for the holiday pay I will be getting for working tonight.

Really though. So much to be thankful for. Last Thanksgiving I was tentatively thankful. Does that make sense? We had known about Lauren's diagnosis for about a month. I was so afraid she wouldn't make it. We had just learned about her need for open heart surgery. Google was scaring the crap out of me. So I was thankful, but so so afraid of what our future would hold.

This Thanksgiving we are blessed with two amazing, beautiful and healthy children. Lauren has enriched our lives more than we could've imagined. Ryan is the best almost 3 year old ever. He told me "Merry Christmas and Happy Halloween!!!" today! I think so many holidays at the same time of the year confuse him!

My mom took the kids out to lunch and around town today while I slept. The waitress first said how much she loves Lauren's little earrings, how cute she was and then said, "Can I ask? Does she have..." and kind of trailed off. My mom said she was really young. Good for her for asking. I LOVE that! Asking is so much better than staring! It turns out that her older brother also has special needs! Ryan ate really good (shocking!!) and Lauren charmed the whole restaurant. I'm so jealous that I wasn't there!

I hope everyone is as thankful as I am this year and enjoys the time with family!

Sunday, November 18, 2012

Growing up too fast!

I finally have time to update about Lauren's appointments!

We're 100% done with the helmet!! YAY! I was pretty much the worst helmet mom ever and barely ever made her wear it. So at least now I don't have to feel guilty about it!

Her audiology appointment went...okay. It showed mild hearing loss and fluid in one ear. I personally felt like the test was unreliable. They had us sit in a booth with her on my lap facing outward. They played noises and she was supposed to look in the right direction. Which sounds like it would work except then you realize that it doesn't always. Lauren hates facing outward unless there's something cool to watch. She loves faces. She loves eye contact. She likes touching our mouths as we talk. So yeah, the sound booth so was not her thing!

We're getting a second opinion! Still with U of M, just a different audiologist. We're seeing an ENT afterwards. I think it's the same doctor who did Ryan's tongue surgery last year. I hope so, he was a great doctor. If we still see hearing loss and still see fluid in the ears then it looks like tubes are in our future. I know in the long run, especially considering Lauren's surgical history, tubes are not the biggest deal in the world. But it's still surgery. On my baby girl. Again. I don't know if this mama can do that again. I'm scared.

I know it will be okay but I don't have to like it!

Lauren's been trying to get up on all fours for a while and can do it for a couple seconds. Well, today she popped up on her hands and knees and rocked back and forth! TWICE! Lord help me when this girl starts crawling, she is a wild woman already! She's also been saying dada all the time, especially while gazing lovingly at Greg. It's so adorable! I'm still waiting on Mama. She says in sometimes but not with any purpose. At least with Dada she will occasionally say it to him!

Both kids have been so adorable and loving the past couple of days. Ryan is just becoming this sweet, wonderful, caring little boy. He changed Lauren's diaper today. With lots of supervision, obviously. But he was so excited to help is "baby gull". He is growing up to be such an amazing person!

Lauren and Baby Cousin are BFFs!

Ryan loves the ducky tub
It's getting cold here in Michigan!
 

Sunday, November 11, 2012

Happy Veteran's Day!

Things have been busy here, I haven't had time to post.

Friday night we had a family over for dinner. The couple has 2 girls, Grace and Hope. Hope is 5 months old and has Down syndrome! We met them through Lisa, our mutual early intervention teacher. They are the nicest family! We had a great time and really connected. We already talked about Lauren and Hope getting an apartment together when they grow up. LOL! (Not that I'm ever ever ever letting her move away from me!!) It was really awesome to connect with another family who really 'gets it'. Their daughter also had open heart surgery at the same hospital as Lauren. We definitely hope to get together with them again soon! Ryan and Grace got along great and played all night. Ryan even let her sit in his Thomas the Train chair. I have never even been granted such an honor.

Tonight the kids and I had dinner with my grandparents! It's been so awesome with them living back in Michigan. I missed out on spending time with them for the vast majority of my life so it is more than wonderful to see them with my children. It's amazing.

Since today is Veteran's Day I got to thank my grandpa in person and tell him thanks for fighting for us. His reply was, "Eh, I didn't fight that hard." That's exactly the kind of guy my grandpa is! He joined the Navy at just 15 (he was a bit, um...creative with his birthday when he joined).

At church this morning a kid with Down syndrome happened to be sitting right in front of us! He looked to be about 13 or so. Greg and I were so excited! Then after service Ryan and I were walking around and a little guy ran up and hugged me, out of nowhere. He looked to be about 7-ish. His dad said "Oh, I'm sorry! He's special," almost apologetically. I said, "He sure is. I love hugs!"

Can you tell I had an awesome day?!

Tomorrow Lauren and I have a busy day planned. We have an appointment with the helmet people at 9. They're hoping it's a final scan and we can discontinue the helmet therapy. That would be great since we never make her wear it anymore, except for at night. She doesn't sleep on her back and she's always either being held, playing on her tummy or practicing sitting up. There's not much pressure on the back of her head so if anything, it won't be getting worse.

Then at 11 we have her audiology appointment (the hearing doctors). I have been so excited for this! I think Lauren probably hears fine right now, this is a routine scan for kids with Down syndrome at this age. But if she doesn't hear fine and needs hearing aides I am 100% happy with that. I had hearing loss as a kid that wasn't corrected until a couple sets of tubes and maturation. I've read before that the ears or the sense of hearing (or something like that) is one of the last things to mature and can improve with age for some kids. It did for me. I am a twin and we were preemies. I weighed 2lbs 12oz at birth and had surgery as a baby to correct bilateral hernias. I wasn't exactly the healthiest baby ever. I never had hearing aides, my mom said it wasn't ever something the doctors wanted to pursue.

In hindsight, I kind of wish I could've had them. I realize that I would've hated them at the time. I hated not being able to hear, I hated always having to sit in the front, I hated going to my audiology appointments and sitting in the booth for hearing tests. But to actually have known what was going on more often? It would've been way better. I just didn't want to look "different". Hopefully Lauren won't mind too bad if she ever needs them!

I want her to hear me when I tell her how perfect she is, you know?

Lauren has also managed to develop a weird rash over the last couple of weeks. It started out as just some redness behind her knee but it looks worse now. Of course I noticed it after her bath on Saturday night, when there is nothing I could do about it! I'm calling the pediatrician to see what they think. I'm thinking it's probably excema. It's dried out since this picture was taken and it really looks like excema. I might be trying to talk myself into that answer. Is that horrible? I'm so afraid it's a food allergy. I finally got a kid that will eat literally anything we give her. She had meatballs, mashed potatoes and gravy for dinner tonight. Ryan would never ever eat anything close to that. I dread the very idea of eliminating everything in her diet and building back up to see what causes a reaction. Please pray that's not it.

That may seems trivial but you don't know what a battle food has been with Ryan. I give you a short list of foods he'll eat. Fruit, carrots, celery, the occasional bell pepper, crackers, peanut butter, applesauce, waffles, pancakes, pizza, chips and salsa, Spanish rice (though not white rice), fruit snacks, candy, cookies and cereal. No joke. That's it. We can get him to eat scrambled eggs if he is heavily distracted by something interesting on TV and we can shovel it in. He will eat a happy meal if we bribe him with sips of Coke. He hates meat. Won't touch beans. I've tried giving him microscopic bites of chicken in chicken noodle soup and he spits out the itty bitty chicken bites. It keeps me up at nights that he can't possibly be growing with his measley diet. But he somehow does. The pediatrician assures us it's really common for kids his age. But I feel so incredibly guilty about it, like I'm starving him or something. I reeeeallly would love to have just one kid who will just eat.

Okay, now that I've just bared my soul, I'll give you some pictures. (Yes, the food issue is that big of a deal to me!)

The pictures were taken only 3 days apart! It's now more flat looking with the dots on the outside. It's really dry in the larger part of it.
 
She is trying SO hard to crawl lately. As you can tell from the top picture, her main motivation is the cat! She can get herself backwards pretty well, but hasn't quite figured out forward motion yet. I think we're all in a lot of trouble once she does!
 
Who wouldn't want to catch this adorable face?!
 


Tuesday, November 6, 2012

We voted!

We voted today! No, I won't tell you who I voted for. In fact I almost didn't vote because none of the candidates really seemed like the right choice for me.

Lauren came with me! She grabbed my pen and tried to eat the ballot. Go America!

Monday, November 5, 2012

Life is underway

I thought about doing the "30 Days of Thankful" post here, but remembered that I'm terrible at comitting to blogging every day. So I'll just tell you some things now. Thankful Monday, perhaps?

  • I am so thankful for my mom and mother in law! They watch our kids so Greg and I can make it work without daycare. I work midnights and Greg works days. They watch our kids so I can actually sleep! It's amazing. We would be absolutely lost without them.
  • I am thankful for our kids. The other day Ryan was brushing his teeth WHILE eating chips. Hilarious! Hey, at least he brushes his teeth.
  • I am thankful for our beautiful home. It's small but it's perfect for us right now. Added benefit of a small house- less to clean! Nothat it entices me to clean any more often.
  • Vanilla Coke. I had some for the first time in years earlier this week. It's the small things in life!
We're doing great over here at Meeting Lauren. Girlfriend is all over the place and so ready to crawl. She's starting popping up on all fours for a second or two. She's also started sitting up on her own! She can't do it for more than 20-ish seconds but man, am I proud! She started waving yesterday. She and Ryan were even waving at each other before bedtime. It melted my heart. Of course she wouldn't do it for me today though!

I'm really bummed that the election is on a Tuesday. I mean, yay politics! Woo! But Lauren has therapy on Tuesdays. Last Tuedsday was a snow day or something, I think it was because of the hurricane (didn't know we got those in Michigan!) It was pretty windy! And this week is the election. I need to see Lauren's teacher so I can shamelessly brag about how awesome my kid is update her on Lauren's progress!

He needs a haircut! Anyone volunteer to take him? It's really awful fun, I promise. He loves it.

Thursday, November 1, 2012

It was not fine.

I was recently reading back over my posts from when Lauren was in the hospital. I certainly wasn't intentionally lying, but I was definitely not feelings so upbeat.

The way I personally deal with stress is overwhelming positivity. I think it's more trying to convince myself that everything is fine than trying to convince anyone else. It's my coping mechanism.

But really, I was extremely depressed. I remember being afraid to hold her because I was afraid to get "too attached". Yeah, like it was possible not to fall more and more in love with Lauren every day. I remember thinking I would kill myself if she died. When I was pregnant and I bought her coming home outfit I remember thinking, "I wonder if I'll have to bury her in this."

I wish I had blogged about that raw emotion. I think it would've helped even more than fooling myself into thinking I was fine.

I was not fine. I was not okay.

I was terrified, I was overwhelmed. I was devestated. At one point I wondered if it would be possible to just walk away from it all. What would happen if I left and just never came back?

Watching Lauren was like a ping pong match ever day, trying to find the right combination of heart medications and diuretics to keep her stable. Then the infection set in and I wondered if she'd ever really be okay. Some days she just seemed so sick. How could a baby ever come back from that? But she did.

The day of her surgery I handed over my not quite 7lb six week old daughter. I cried my heart out. Then, do you know what I felt? Nothing. I was absolutely numb. It was horrible. When they finally came and told us that she made it through surgery and would be on her way to the PCTU (pediatric cardiothoracic unit - a pediatric cardiac intensive care unit) I physically felt the stress leave my body. It was like my entire being sighed with relief. Maybe, just maybe, I would get to keep her. I felt myself finally coming back.

Then after surgery when her lung collapsed I felt those feelings resurface. When I went to visit her that day I checked in at the desk and the receptionist told me to wait, that Lauren's nurse would come see me first. When the nurse walked out and asked, "Are you Lauren's mom?", I felt the numbness start to come back, it was like my soul was leaving my body. She quickly explained what had happened and that she would be off the ventilator probably later that day or the next day. Thank God she was right. I don't think I was even human until April 9th, the day after Easter, when I finally got to take Lauren home.

Do you realize how guilty I felt? It was awful. I couldn't talk to anyone about it, I felt like nobody understood. In hindsight, I probably should've been seeing a therapist or a counselor. I felt like anyone I told would judge me for being depressed or not trusting that things would be okay.

  I don't feel quite so guilty anymore. I don't think there are words to describe what it's like to go through something like that. It was part of my journey. I know now that it was okay to feel that way. I don't think my family would've judged me.

I don't know why I'm even writing all of this. I just want it here for the record. I was not fine. I wish I would've known that was okay.

Halloween and catching up

I hope everybody had a great Halloween! We definitely did!

Here's a bunch of pictures from my iPhone:

The kids and I with their amazing Aunt Raegan! Raegan recently got engaged!! YAY!!!

Her petals kept blowing in the wind while we were trick or treating. Ryan really liked Halloween, I think it's the first year he really "got" the whole trick or treating idea. He was still trying to eat each piece of candy right when he got it, but whatever. It was totally adorable.

Amanda and I at a Halloween party! She was wearing her adorable son as a costume- he was popcorn! She and I were asked more than once if we were twins, we love that!

Ryan and I at his preschool Halloween party!! He was saying "trick or treat!" in this picture!

And earlier in the day on Halloween we had a visit from our very favorite little guy: Baby Cousin!
I'm telling you, Lauren loves him to pieces! She loves to hug and kiss him and she even tries to make him laugh. We're already planning on them being best friends, they're only 5 months apart! Note: His name is Jesus but we call him Baby Cousin. Ryan refuses to let anyone call him anything else.

I was awful at 31 for 21, and on my very first try! I don't think my life is interesting enough to blog about every single day. I can tell you that when we first got Lauren's diagnosis I never thought that would be the case! But life is just normal. If we'd had a baby without Down syndrome (which is so weird to think about because that baby would not be Lauren) I really don't think our lives would be any different. I certainly wouldn't want it to be different.

Life is just as crazy here as I imagine it is in other homes. Want to know what happened yesterday? I was watching Baby Cousin for a little bit. I was worried about having 3 kids in the house (and I was somewhat sleep deprived, as is the life of a gal working midnights) but it started off going so smooth. I even posted to a message board of friends that it was so easy having three! I bragged that Ryan was playing with his trains, Lauren was in her exersaucer, Baby Cousin was in the baby playmat/gym and I was even making dinner! Piece of cake.

Not 2 minutes later I walked in to check on my entirely too quiet living room to find Ryan peeing on the floor! Haha! My friends loved that, I assure you. Three kids is hard work! Maybe we'll get a dog when I start feeling the itch for another little one ;)

So November is here, time for sweaters, boots, scarves, snuggles and hot cocoa. October was a great month for us, I can't wait to see what November brings!