Hello Dairy, I've Missed You

Lewis had an appointment with his pediatrician today and I'm happy to report that everything looks good! He is 14 lb 8 oz and 26 inches long. That's too small to even be on the growth charts... but he's gaining weight like he should be, so the doctor isn't concerned. Coleman and I aren't very big either so I'd be more surprised if we had a huge kid.

I'm not sure if I ever wrote about it on here, but at Lewis's 4 month appointment, we figured out he had a dairy allergy. His life didn't change much, but I had to break up with one of my best friends- cheese. It was really more of a temporary break, because I recently started adding dairy back into my diet and Lewis hasn't shown any signs of the allergy. Sooo I asked about it at his appointment today and I'm happy to report.... cheese and I are back together. Also ice cream and butter and cream in my coffee and lots of other delicious things. I got back from the appointment and immediately ate way too much pizza for lunch. If he tolerates this dairy overload, I'll start introducing it into his diet too, in the form of yogurt, to begin with.

I'm still in the process of figuring out therapy and insurance. There are a few different options we're considering, including aqua therapy. The problem is figuring out the right therapy at the right time AND trying to get it covered by insurance (which is next to impossible). I've all but given up on having any help from insurance for therapy. Here's the quote from our policy book:

Short-term outpatient physical therapy is covered when medically necessary for a condition that can be expected to improve significantly within 60 consecutive days. 


So yeah... not much help from them. I'm so incredibly thankful that we have so many therapy options to choose from. It's hard to know what's right for Lewis, though. And even if I think I have the answer to that, it never aligns with what insurance will pay for. Ugh. Anyway, I stressed about that for a while and finally realized that I don't have all the answers. So I'm praying about it and waiting. I'm not very good at waiting. If you've ever stood in anything even remotely resembling a line with me, you know that. But other than this blog post, I've successfully kept from obsessing over it for a few days now, and I feel good knowing that God knows what's right for Lewis and will show me a way to make it work. He'll show me what I need to do.

Look at those hands go!

Lewis holds onto the bar on the stool to practice sitting up without anything to lean on... 

Only this is what he usually ends up doing.

Since Lewis doesn't lift his legs very often or very high, I lean his legs up against something, like this, so that he can see when he moves them. It gets him to play with them which is really important for his development and awareness of his bottom half.

 It's obviously super fun!

 And a random photo session...

 That included lots of drool...

Some bubble-blowing... 

Some sly grins... 

And letting Mom know she should probably think about vacuuming... 

But he was sick of laying on his belly and decided he'd rather suck his thumb and watch the fan go around. It's his favorite thing to do lately. Yes, I purposely picked the picture of him lifting his leg. I know it's not much, but I love every single movement that kid makes.

Lewis works very hard to do things that would come naturally to a lot of babies. We work with him every day and have recently seen him make some progress which is so rewarding to see. I've been taking videos to track his progress and I can't wait to share it with all of you soon!

What a Difference a Year Makes...

We're coming up on the anniversary of a day I'll never forget, and I think it's a good time to look back. January 27, 2010, my life changed forever. It was the day we found out our baby would be born with Spina Bifida. To this day I remember events by whether they were pre- or post-diagnosis. I don't know why, I guess it affected me that much... that I looked at everything different after. But I'm getting ahead of myself, let's rewind.

Sometime in early October....

Coleman was out in the middle of the Great Lakes somewhere, sailing on a tugboat. He was on a schedule where he would be working for 28 days and home for 14 days. We didn't know how long this would last and when and if he would return to his regular job. We were thankful for the work but it was hard on both of us. Needless to say, starting a family was the last thing on our minds. But I had a hunch... so I took a pregnancy test.  I immediately called Coleman, waking him up, to tell him I was pregnant. And I started crying. I was scared, I was 300 miles away from my family, I was all alone in big house, I was not ready to be a mom, I had just started a business, I had so many things I wanted to do, I had massive student loans, I had a tiny 2 door car, and THIS WAS NOT THE PLAN. Coleman, of course, was calm as ever and assured me that everything would be alright and everything happens for a reason. Yeah, ok.

Fast-forward a few months...

It honestly took me a while to be excited about the prospect of having a baby. I knew that I would love the baby the moment I saw it but it just took some time for me to adjust to the new plan. Coleman went back to his regular job in the office. He was still gone a lot but we were used to it. And finally, the day came that we would find out if we were having a boy or a girl. I wanted a girl so badly! I would walk through stores and see all the cute girl clothes and I just had to have a girl so that I could dress her up! I knew that they would be checking other things at this ultrasound. You see, at 15 weeks, there is a blood test that can check for markers that indicate Spina Bifida and other abnormalities. So, at 15 weeks, my doctor asked me if I would like to get that blood test. I asked if it was really necessary. I intended to keep the baby no matter what the results, so I figured it didn't matter. Except.... I had heard about this surgery they can do on unborn babies if they have this thing called Spina Whatevida. She explained that there were places performing fetal surgeries but that they would check for Spina Bifida at my 19 week ultrasound by looking at the blah blah blah blah blah (my eyes glazed over because none of this would EVER apply to me)..... so I didn't have to get the blood test if I didn't want to. I didn't. And for the record, I'm glad I didn't. It gave me 4 more weeks of ignorance and innocence. So back to ultrasound day, it is crazy how vividly I remember some things. The waiting room was really full and I was playing Tilt on Coleman's brand new phone. I feel sick to my stomach every time I see that game now. We went in, the ultrasound started, and surprise! It's a boy! Honestly I was a little disappointed... but I couldn't wait to get out of there and start calling people only the ultrasound kept going and going.... I remember her taking pictures of the spine and of the head. But we didn't know any better... we figured that's what they always do. When the ultrasound was over, she let me use the restroom (they make you drink 32 oz of water before every ultrasound... where they proceed to jab you in the bladder) and then showed us to an exam room. We sat down and I opened up a magazine. I remember saying to Coleman, "I wonder why we're in here? I hope nothing's wrong." And then I went back to reading my magazine. A few minutes later my doctor came in and greeted us.

 And then she said, "Something's wrong."

"What is it?"

"Spina Bifida"

"What does that mean?"

"Some level of paralysis. Blah blah blah blah. You'll need to have a C-Section. Blah blah blah blah."

"Are you sure?"

"Yes, blah blah blah, lemon sign, blah blah blah. But it doesn't usually affect them mentally, so if you're looking for a glimmer of hope..."

Only I wasn't looking for a glimmer of hope, I was looking for the rewind button. I wanted to go back to my  plan, which was obviously so much better than this one.

I remember her putting her hand on my leg and saying something like, "I'm so sorry, it's always the good parents..."

Good parents? Five minutes ago I was whining because I wanted a girl. I felt so selfish and dumb.

I remember for the next few months the word paralysis just kept floating around my head. At random times, it would just pop up. We went home and suddenly google was our worst enemy. I wished there was a filter I could click that would show me only good results. I desperately wanted information but was terrified of what I would find out. And what I did find out was scary. I learned about closure surgery, hydrocephalus, shunts, bowel and bladder issues, catheterization... and I was scared.

The next week we had an appointment with the high risk OB in Grand Rapids. They would be taking over my care for the remainder of my pregnancy. The appointment was at 7am which means we had to leave around 6. It was still dark outside when we got there. How incredibly depressing?! We sat through an hour long ultrasound. Suddenly ultrasounds weren't so much fun. We analyzed everything. She took a few pictures of the baby's heart, so is there a heart condition too? The doctor came in to talk to us and let us know that other than hydrocephalus that is on the high end of normal, the baby looked healthy.

And she asked us one question. "Do you wish to terminate?"

"No"

"Ok then let's talk about where we go from here."

I was terrified and I wanted desperately for this all to just go away but I truly believe that decision was never mine to make.

I'd say that was the lowest point... from there on we started seeing glimmers of hope that started with this beautiful face. The day I answered that question was the day I saw a picture of the sweet baby boy I would meet in a few short months.

How can you not fall in love with that face?!

Later on we went home and did some more research. Only this time, instead of finding statistics and scary pictures, we found families. We found stories and pictures and videos of beautiful, happy children with Spina Bifida. And FINALLY, I could picture it. I could picture our life. And it was happy.

You probably know the rest of the story. We met some of these families in person. We met and fell in love with their kids. We couldn't wait to meet our own. And on June 8, 2010, we did. And we love him to death.

While Spina Bifida doesn't define Lewis, it will shape who he is. He wouldn't be the same without it. I believe he'll be a better person because of it. I know I will.

I'm glad God chose me to be your mommy

I love you, Lewis

First Christmas

We hope you all had a fun Christmas. We really enjoyed Lewis's first Christmas and are really looking forward to the years to come when he can really enjoy it too! At the last minute we decided to travel to Illinois to spend Christmas with our families. It was a short, busy trip but we were happy to see everyone. Since we wouldn't be home on Christmas we decided to have Christmas a few days early at the Miller house. We got Lewis up and he opened his gifts and played with his new toys and it was a lot of fun. Lewis really enjoyed his new ball-popper toy... although I'm not quite sure he's using it for its intended purpose...

While wrapping presents, we also discovered that Lewis doesn't quite know what to think of tissue paper. He's fine with wrapping paper... but tissue paper is another story, as you can see. 

Lewis FINALLY got to meet his Uncle Joey

He put lots of new things in his mouth

He got to try out his new portable "high chair"

 He got this new table which he uses to practice his tall kneeling

He loves it! And mom is learning some Spanish while he plays...

He also got this cool therapy crocodile that he's sitting on. He does a lot of different things with it but one of his favorite things to do is sit on it with his feet flat on the ground while playing at this table. Look at that grin! Oh man I love that little guy!

He got some new bath toys which make bath time even more fun... if that's possible

 And he practiced his kicking while hanging out in the tub (Like my sweet blurring skills?!)

Because of all the kicking that Lewis does while in the water, I've decided to sign him up for Aqua Therapy. I found a place in Muskegon that works with kids his age. We go in for the assessment next week and I'm really excited to try something new (especially something that doesn't involve driving to GR!)

At the end of it all, he was exhausted and just vegged while the rest of us played Wii

Happy New Year!

Lauren, Coleman, and Lewis

And The Winner Is......

www.iheartlewis.com

Naomi Muyskens!! 

(Coleman had no idea how to say her last name, hahaha!)

(Also Lewis hates the sound of paper crunching... as you can see)

We have been blown away by the generosity of family, friends, acquaintances, and complete strangers. I am so glad Lewis was born into our family. I would not choose this diagnosis for him, or anyone, but I am glad I get to help him reach his potential. Kids like Shea, if not adopted, will grow up in a group home, bedridden. Kids like Lewis. But because of a loving family and the generosity of others, Lewis will have a COMPLETELY different story. 

I can do ALL THINGS through Christ who strengthens me. Phil 4:13

Thank you, thank you, thank you, we can't say it enough!

Lauren, Coleman, and Lewis

P.S. Lewis's first Christmas pictures to follow!!

Yum Yum Yum!

We've been busy busy busy since our last post. And I'm sure the next month will be more of the same! But we're very excited for Lewis's first Christmas coming up! A few highlights from the past few weeks... in picture form, of course!

Lewis and I went to an SB play date. How stinking cute are these kids?! It's so encouraging to talk to the other moms and see how great these kids are doing. I am more thankful for these families than they will ever know.

Greyson let us borrow this cool foam elephant that Lewis can use to help him with sitting, kneeling, and standing. He thinks it's just for chewing. Sorry Greyson, it may have a few extra drool marks on it when you get it back! ;)

Lewis started solids!! A few months ago, I started making and freezing baby food for Lewis. Then I separated it into assorted fruit and veggie bags. Here are Lewis's 6mo veggies. Don't they look yummy?

Sitting in his high chair like such a big boy waiting to try some food.

Yes, please!

WHAT IS THIS!?

Why would you put this in my mouth?!

It all went downhill from here......

 But after a few days of trying, and with the help of something a little yummier than rice cereal, we finally got a smile!

 Finally, we put up the Christmas tree. Lewis loves it :)

Hope you're enjoying this Christmas season! Only a few weeks left to enter to win the iPad. Thank you so much for all of you that have already donated. We're truly blessed to have all of you in our lives.

Crazy Day... and not in a good way

I thought this week was going to be an easy one... only one appointment with Lewis's pediatrician. It didn't quite turn out how I had planned though. At the appointment we found out Lewis had only gained 3 oz in a month. Plus, he had some blood in his stool. All of this is leading us to believe he may have a problem with dairy products that are coming through my breastmilk. So.... I had to start a dairy free diet. It will be quite an adjustment. Right now I'm choking down some coffee without my beloved cream. I'm telling you, the world is grey without cheese! hahaha I'll be fine! We have to go back to the pediatrician in a week to see how Lewis's weight is doing.

I mentioned in an earlier post that Lewis slept a lot on Monday to make up for lost sleep over the weekend. Well that sleeping continued on until Wednesday and I started to get concerned. Then that evening he threw up a couple times and he never spits up so I called the on-call neurosurgeon. I don't think he was a pediatric neurosurgeon because all he told me was, well if his fontanel is fine, he's probably ok. PROBABLY?? A few minutes later Lewis threw up a lot so we went ahead and brought him to the ER in Grand Rapids. We called the ER in Muskegon first to see if they had a device to reprogram the type of shunt that Lewis has... I'm pretty sure they had no idea what I was talking about so we made the drive to GR. We spent the evening in the ER and let me tell you, after my own experience in the ER, I am so thankful they separate the kids from the adults. What a different place! Lewis flirted with all the nurses and doctors and thought we were on an exciting adventure. He got a couple X-Rays of the shunt to make sure there were no kinks in the tubing. He also got a CT scan to check his ventricles. Seeing that little boy in that huge CT scanner was one of the cutest things I have ever seen. I wish I had had my camera. He was very wiggly so Coleman had to hold his little head in place. So cute! Everything came back normal. YES!!! So they told us it's probably just a stomach bug and it may last a few more days. I am so thankful! But at what point am I going to know the difference? I certainly don't want him to have to get a CT scan every single time he gets sick! I guess we'll cross that bridge when we come to it.

Thank you for all your prayers. God is awesome and his ways are higher than mine. While I'm interested in being comfortable and avoiding difficult situations, he's interested in making me a stronger and better person. I choose to be thankful for that, even when I don't feel like it.

Anyway, hope you're all having a better week than us... I'm off to go snuggle with my sleepy baby ;)

Lauren

AFOs!!

I've been looking forward to this day for weeks now... the day we get Lewis's AFOs! Aren't they adorable?! They look enormous... way bigger than his feet. They're big so they can be adjusted to fit him as he grows and we can maybe go a few months without getting new ones.

The AFOs should accomplish a couple things. First, as Lewis's muscles are getting stronger, they are pulling his feet into weird positions. That's not a big deal, but left alone, it could be a problem in the future. The AFOs help to put his feet in a neutral position so that they'll develop normally. Second, Lewis has very little, if any, strength in his ankles. The AFOs support his ankles so that he'll eventually be able to stand on his own. Again, not really an issue now, but we are doing a little standing with him in therapy, so the AFOs should help!

Lewis thinks they're pretty cool and is already messing with them a lot... I can just see it a few months from now when he's ripping them off!

Remember to check out www.iheartlewis.com :)