Welcome to my blog!

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

Monday, July 23, 2012

Mashed potatoes, a new baby and a helmet

First and foremost, I am an aunt!!! My sister had her baby and he is GORGEOUS!!! His name is Jesus Robert Enriquez, he weighed 6lbs 1oz and I love him!! My sister is seriously super mom. She was in labor for 30 hours and pushed for 4 hours. She is a champ!!

Lauren had her helmet evaluation today. She gets her helmet on August 6th! I was worried that they wouldn't give it to her but her head control really is fine, she just obviously nowhere near sitting independently which is part of the reason her pediatrician wanted it in the first place. I wouldn't even call her head flat in one spot, her whole head is just shaped "weird" for lack of a better word. I'm happy in a way, I would hate to regret not doing it later when it's too late. If we were to "wait and see" we could possibly miss our window of correcting this and her facial features could end up distorted due to her head shape. And her facial features are pretty dang cute, we don't want them to change!

A couple of weeks ago I had been telling the EI people that it didn't seem like Lauren noticed her surroundings. For example, if she fell asleep at home and woke up at a restaurant she wouldn't notice. Well, that has changed! When we got back to the exam room today she could not stop looking around! It was so cute, I love seeing her become more aware of her surroundings.

She is currently sleeping (hallelujah! Sleep has been hit or miss in this house lately) and wearing 6 month sized pajamas! My baby princess is growing up! I swear I never thought she would be so chubby and healthy. I was shopping for a friend's baby shower a week or so ago and noticed a preemie outfit. How in the world did my chunky Lauren ever fit in that size?!

Lauren has also expanded her repetoire of foods she's tried to include mashed potatoes and gravy. I swear, I'm not giving her real bites, just little tastes! She smacked her lips and smiled so I think she liked it! My mom makes the best meatballs, mashed potatoes and gravy ever so I'm not surprised she liked it. I'm not totally sure when we're supposed/going to start baby food and baby cereal. I've heard that a lot of kids with Down syndrome start solids late but I'm not sure how late. I've also heard that waiting too long to start solids can lead to some texture aversions and delay learning to eat real food. Our pediatrician didn't mention it at our last appointment and we don't go back until September 10th. Either way, I'm sure little tastes of food here and there aren't doing any harm. At this point she still needs to get extra calories through fortified formula anyway.

Here is my amazing nephew! We are one blessed (and attractive) family!

Friday, July 20, 2012

Summertime fun!

Life has been so busy and incredibly fun! Sometimes I feel stretched in a million directions because of work but I do like it.

We've been doing fun summer things over here! Going to the park, playing outside, going on picnics. Here's a couple picnic pictures!

I guess I might be a little biased, but isn't he just so handsome?!

It was sunny!

Lauren has started doing some new things! Three weeks ago she couldn't even really pick up her head during tummy time, much less roll over. Now not only does she roll from her back onto her belly, but she props herself up on her elbows and looks all around! It's the cutest thing to see, she is so interested in what's going on around her.

I'm excited for EI in the fall and everything, but I think this proves my theory that at least for us, therapy is not the end-all-be-all. We had one group therapy session three weeks ago. We were supposed to go last week but I was exhausted after working all night so we skipped it. She just needed to build up some strength and get a little older. I am so stinkin' proud of her! She can't quite roll from her belly to her back yet (she doesn't have the upper body strength-probably a combination of after effects of her surgery and Down syndrome) so she gets a little mad when she's had enough of tummy time. It's so cute I feel really bad when she cries!

Lauren has an appointment to be evaulated for a cranial molding helmet on Monday! Her head is pretty dang flat. Her pediatrician made the referral since she will probably not sit up for a while, which just gives her head more time to get flatter rather than round out. Ryan had one too and it was adorable. He only had to wear it for 6 months. Isn't he the most adorable little chunk?!

Here's the catch: I will be at the hospital with my sister because she's getting induced on Sunday night. (YAY!) So Greg took the day off so he can take Lauren. He's threatening to get her a helmet pattern with guns and knives, LOL! Luckily the University of Michigan orthotics clinic has a ton of cute patterns to choose from, most of them are girly. Greg has been threatened with bodily harm if he picks out a boyish pattern. I'm half expecting him to pick out cammo or something. Yikes! I'm kind of tempted for him not to tell me what he picks and I'll just find out when we go to have it fitted/adjusted! Pray for me, haha.

There's a chance they won't give her a helmet yet since she's a little behind in head/neck control but at least they'll evaluate her so they can make a decision. Lauren's flatness isn't as bad as Ryan's was so maybe they'll even say she doesn't need it. I feel somewhat bad because how the heck do both of my kids need helmets?! The doctors said Ryan's was because of how he was positioned in my uterus combined by the fact that I was in labor for 15 hours before my emergency C section. Lauren's is because she didn't have the neck strength to turn her head from side to side as a new baby and now it's just easier for her to lay in one position. We have tried EVERYTHING to get her to turn her head the other way when she sleeps but it's a no-go.

Whatevs, apparently I just have kids with misshapen heads. At least they're cute, right? I'm kind of bummed about it with Lauren where I wasn't at all with Ryan. Maybe I feel a little guilty about her having so many health problems (although I know it's irrational- especially because she is SO healthy now). Maybe I am just bummed because she won't be able to wear hair bows for a while. Probably both. People already stare at her because of her extensive cuteness, now they'll stare because of her extensive cuteness AND adorable helmet! No joke- we can't go out in public with her if we're trying to make it quick. We are always stopped at least once for people to tell us how cute our kids are. It's tough, but it's our cross to bear.

I promise I will post pictures of my new baby nephew!! I cannot wait to meet him! He's already told me that I'm his favorite family member so it's really awesome that we'll get to meet in person soon :) Both of my sisters have been aunts for over 2.5 years and it's finally my turn!!! Always a bridesmaid, never a bride ;) My kids need a cousin!

I almost forgot to tell you! Lauren tried avocado and loved it!! Okay, I lied. She actually ate guacamole off of a chip, but I thought you'd judge me.

Tuesday, July 10, 2012

Happy kiddos!

Ryan and Lauren got to go to the splash park with their Grandma and their Aunt Raegan today! I got to go grocery shopping alone! (I'm weird, this is one of my favorite things to do.)

Can you tell Lauren was excited?

And Ryan was a little less impressed

I might be biased, but I think I have the cutest kids around! Life has been normal here. I'm just adjusting to working midnights and sleeping during the day. It's weird but word on the street says I'll get used to it eventually. I love my days off with the kids though!! And I'm off this weekend so Greg will be home too :)

Oh, and remember me joking in a previous post about people with Down syndrome having super powers? It turns out that it's true...Lauren's super power is that she doesn't need sleep, apparently! LOL. She has been awake all day with no signs of a nap on the horizon- it's 4:30pm! She's in a really good mood though and talking to herself and wanting to cuddle. If only she could make dinner!

Friday, July 6, 2012

Faith and Down syndrome.

There was recently a blog hop of a bunch of bloggers in the Ds community blogging about faith and Down syndrome. I totally missed it, but it's a post I want to write so here goes...

I make no secret about the fact that I am a Christian. While I don't necessarily agree with everything the Church says in regards to social issues, and well, probably some religious issues too. I most definitely identify myself as a Christian. I don't feel the need to fit my beliefs into a box with the label of baptist, catholic, protestant, etc... My label is Christ. And I'm okay with that.

In all honesty when we first got Lauren's diagnosis at 18 weeks pregnant I thought I did something wrong. I searched my heart for what I had possible done to be punished in such a way. It was rough for me. I couldn't picture a normal future and I knew it was my fault. That feeling went away after a while and I was okay with Lauren's extra chromosome. In fact, I loved it! I still do.

I don't know why I got Lauren. I don't know if I ever will. I don't know if she was given to me for a specific purpose or reason. But I do know that she is absolutely perfect, made in God's image. Her extra chromosome is on purpose. Her having Down syndrome is on purpose. That is what I truly believe. She is such an amazing gift that I absolutely do not deserve. I hope I can advocate for her to my full potential and teach her to do the same for herself. I want her to know how truly amazing she is and that God put her here for a reason. She is perfect. I believe God gave her the extra 21st chromosome. If I had a magic wand to take it away I wouldn't do it. She's perfect exactly the way she is. I am thankful that she has Down syndrome. Hope is her middle name for a reason. God gave me a new lease on life through Lauren and our hope for her future is endless.

Then we found out about Lauren's heart. The issues are totally separate for me. I'm sure that's kind of a skewed perspective seeings how the reason Lauren was born with her heart defect is because she has Down syndrome, but they are separate for me.

 I had a lot of initial anger, bitterness and resentment towards God about Lauren's heart. Honestly, I still do sometimes. I wondered why God was doing this to our family, to my daughter. I know life isn't fair, but complete idiots have healthy babies. I've blogged about it before. I was angry. I'm still angry. If there is some big life lesson  for me behind Lauren being so sick and spending 5 weeks in the hospital, battling sepsis, a collapsed lung, open heart sugery and tons of pain then why didn't it happen to me? Why her? She won't even remember. I don't think her open heart surgery will have as profound an emotional impact on her as it did me. I hope not, it was devestating.

One of the ultrasound technicians who did an echo of Lauren's heart says she sees a lot of parents who have babies with Down syndrome split on which issue to be angry over. Some are angry over the diagnosis of Down syndrome becaue they know the heart can be fixed. Some are angry over the heart issue because Down syndrome can't be 'fixed'. I think both sides are okay and nothing is black and white, but I think you know on which side I fall.

My conclusion about Lauren's heart? In the words of Forrest Gump: shit happens.

Seriously. I don't think there's a huge reason and life lesson in Lauren's heart defect. I try to search for meaning behind it. I think of how much I've changed since before her surgery and I think most of it is for the better. But I can't reconcile the God I follow using my defenseless daughter in a life lesson for me. Her chest was opened up. Her heart was stopped so she could be put on bypass for her surgery to take place. She was intubated after her surgery because her collapsed lung wasn't allowing her to breathe. Her blood was raging with infection that made her lethargic, sick and incredibly weak. She had a needle drilled into her spine to collect fluid to see if she had an infection in her brain. Her fever reached 104 degrees. She was so sick. I can't reconcile that with the God I know. The idea that all of that happened to my daughter to teach me a lesson makes me sick. Am I thankful for the technology available today? Yes. Do I believe God healed my daughter through surgeons' hands? Yes. But that kind of suffering can't be brought on by God. Not as a punishment and not as a lesson.

Wait, didn't I just contradict myself? If Lauren is made in God's image, isn't her heart included in that? Probably yes. But I'm not there yet. Maybe I'll get there soon. Maybe later. Maybe never. I don't know. Obviously I'm still bitter. As much as I like the person I am after going through what no parent should have  to, I can't find a reason for it.

What I do know is that Lauren is beautiful. And perfect. A complete miracle And mine for a reason. I think she has a lot to teach me, probably a heck of a lot more than I can teach her. I'm okay with not knowing everything. And as long as I get to keep her, I'm okay with not knowing why.

This face? This gorgeous little girl who at 4 months old is full of vibrant personality? She's more than a gift or a reward. She sure as heck isn't a punishment. She's a miracle and a person and I truly believe that God made her absolutely perfect.

Tuesday, July 3, 2012

Navigating the IFSP

Lauren had her first EI visit today-they only do group therapy four times total over the summer. Afterwards someone helped me fill out the IFSP paperwork so we can started right away in the fall. (IFSP stands for Individualized Family Service Plan)

I asked about school down the road and if Lauren would be able to go to our local elementary school with her brother and any future kids we might have. I could NOT get a clear answer out of her. She said L would probably be in a SN preschool to "get her used to the school environment" and then we can "see if she's ready" to be in a typical kindergarten.

I asked if the local elementary school had SN programs and she didn't say, just said how another school in the district has a program.

Now, the thing is I realize that it might not be in Lauren's best interest to pursue a diploma program but I feel like they're certainly not planning to even set her in that direction- and she's only 4 months old!!!

The woman must've said "least restrictive environment" which is part of a state (or maybe federal) law stating that children are entitled to a free public educationa and must be in the least restrictive environment possible.

I brought up how kids with special needs, like Down syndrome, tend to be more motivated and do better in school and other group situations when with typical peers. She didn't even really acknowledge what I said. I realize we don't really need to be concerned with preschool quite yet seeings how Lauren is only 4 months old, but how our school district demonstrates "least restrictive environment" will play a large role in where we live and if we decide to move within the next few years.

Then I found out that our Early Intervention teachers are not specifically physical therapists or occupational therapists. They are teachers with a broader knowledge. That worries me a little. I asked about if Lauren would get separate PT and OT and they said kids really only get specific PT and OT visits if they are extremely delayed.  Anyone in the special needs community- is that normal? I have nothing to gauge this by and don't know if this is a good program or not!

We are planning to do private PT and OT and have gotten insurance approval for an evaulation and one return visit. We are very much hoping for approval for regular therapy. I'm not sure what we'll do if we are unsatisfied with EI and our insurance will not cover private therapy. Money doesn't grow on trees.

We did get some one on one time with a therapist while we were there and Lauren was SO tired afterwards. That has to mean it was giving her a workout, right? Lauren got to play on a giant foam wedge that helped her roll and she did tummy time on a giant swing! Then she showed us how to do this really great blanket rolling game to help her with rolling over since she can get to her side but can't quite roll all the way. Lauren seemed to like it! But then another therapist said Lauren is way too young for a baby with Down syndrome to be playing that game. The therapist we had started telling her about how Lauren is super close to rolling on her own. It felt a little like they were arguing, which was kind of awkward.

The one thing that had me leaving the meeting with a smile was that we got to meet a family with a baby boy who has Down syndrome! He's two months old and so adorable! Lauren, however, was not impressed with her "first date" and slept the whole time. Therapy wore her out! The family is so nice and they have an older daughter who is 4 and was so friendly! I love kids that like to chat, I told her she looked like Rapunzel and I think I made a friend for life. They had a birth diagnosis and have gotten involved in the Ds community already! Major kudos to them. They told us about a summer picnic for families who have kids with Down syndrome and I think we might go! The problem is that Greg and I are not exactly social butterflies- well I am more than him at least. I wish we had close friends with a kid with Down syndrome- it would make us way more comfortable to have friends with us at events like that!

I'm trying to see the upside of everything and be excited that we're starting therapy. But I left the meeting feeling a little sad about everything. Why should Lauren have to work so much harder to succeed? It's not fair. But, as I often sing to Ryan when he throws a tantrum (and my dad sang to me when I was little) "You can't always get what you want. You can't always get what you want. But if you try sometimes, you might find, you'll get what ya neeeeed!"

Monday, July 2, 2012

How we told everyone

For a lot of families who find out that their new baby has Down syndrome, telling people is a very tough thing to do. Nobody knows the right words to say, especially when emotions are going full force and you're trying to wrap your mind around a diagnosis and what it means for your future.

We chose to tell our parents and let them tell our parents and aunts/uncles. Everbody else got a mass text message or email. For us, it was very hard to say it out loud at first: Our baby has Down syndrome. I couldn't say it without dissolving into tears for a long while.

Here is a copy of the message we sent:

First of all, as you all heard, we are having a baby girl! We've decided to share her name, too. We are naming her Lauren!

We got some surprising news about our baby girl at our appointment on Monday.  She definitely has Down syndrome.  First of all, I want you to know that we are 100% thrilled that we get to be her parents and cannot wait to meet her in February!!

I also want you to know that its okay to have mixed feelings, sadness, confusion and lots of questions at first. But know that we are excited! God is giving Lauren to us for a reason and WE are the lucky ones.

I am open to answering any and all questions! If I don't know the answer I'll be happy to find out for you because chances are I should know too :)  It is definitely not a secret, I just wasn't sure how/when to tell everyone and it's easier for me to let all my friends know at once.

Thank you all so much for your love, prayers and support!

We were not planning to share her name originally but we felt it would help people see her as a person if they knew her name, not just a scary diagnosis. And we'd had a pretty good guess that she was a girl for the past 3 weeks and had her name chosen before we even got pregnant, I was dying to tell people her name!

The reason we personally chose to tell everybody about Lauren's diagnosis right away instead of waiting until her birth, letting word spread or not saying anything at all (A prenatal diagosis is hard in it's own way and the choice is personal-the right choice in regards to sharing the news is different for every family) is that we didn't want people to gossip. We wanted people to know that we knew ahead of time and were choosing to keep our baby. We didn't want any confusion about what we might've done if we had the chance. We had the chance. It was never a question that Lauren would be welcomed with open arms. We wanted everyone to have the chance to get over the shock, like we needed to do, and get excited for Lauren's arrival. We wanted them to hear it from us!

Who knew that in the midst of our fear, worry, sadness and anger that we were getting our little Lauren Hope? We truly are the lucky ones!