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 :)

Baby Dedication

This past weekend was action packed. It was so exciting for Lewis that he got very little sleep and has taken VERY long naps today to make up for it! Lewis was dedicated at our church on Sunday and our families were in town for the weekend to see it. It was a lot of fun seeing everyone and we're excited to see them all again soon for Thanksgiving. Here are a few pictures from the weekend. 

Also check out our new website for a way you can support Lewis and win a cool prize :) www.iheartlewis.com

My boys

Ok so I realize I put up too many pictures of my baby and my dog. But they're my babies and I just love seeing them together! Gauge is great around Lewis. Probably because we've always kinds of treated him like an obnoxious 5 year old would... but he loves it, I swear! At first Gauge kind of ignored Lewis but here's an example of how he's starting to like him.

Gauge likes to come over and sit by Lewis... sometimes almost on top of him... 

Gauge gets more comfortable and Lewis starts eating Gauge's fur.... just like he tries to do with everything else he can get his hands on. Of course in the process he pokes Gauge in the eyeball and Gauge just lays there and takes it! I love my boys :)

Rolling Over

I FINALLY got a video of Lewis rolling over. It's not the best he's ever done it but at least I got it! 

Casting

Here's Lewis getting casted for his AFOs. He should have them in a couple weeks.

Lewis will also be having an MRI done in a couple weeks. Right now his ventricles are very very small so they'd like to raise the setting on his shunt again but they have to make sure there is room between the brain and the skull. They'll also be checking his brain and spinal cord for anything that could be causing his stridor. They'll have to sedate him for the procedure and sedation with a stridor isn't ideal so please keep Lewis in your prayers. We'll put a picture of him up with his tiny little AFOs on as soon as he gets them! 

Peanut Therapy

We spend a lot of time every day doing physical therapy with Lewis. He tolerates it really well because to him, we're just playing. Here's one of his favorite exercises. His physical therapist left this peanut ball with us so that we can use it when we're working with him. He lays back on it to stretch out his hip flexors and he stands up on it like this to bear some weight on his legs. Today he started sliding back on the ball so that he was in a sitting/crouching position then straightened his legs back up to a standing position. Pretty exciting! He's got some good movement and strength in those legs but not much sensation so it's a challenge to get him to use his muscles. It's so much fun, though! :)

Lewis Laughing

I love to hear this little guy laugh! He's laughing at me throwing a rope and playing with Gauge... in case you were wondering.

Belly Surfing

Lewis has recently started rolling over and I am on a mission to get him rolling over on video. Of course he won't do it while I'm recording... and now that he can roll over it's not so exciting anymore and he'd rather try to do new things. Here is one of those things that is apparently way more fun than rolling over... I call it belly-surfing. :)

P.S. A couple good new Dr. appts! Lewis's hips both look good! His bladder and kidneys look good and during the ultrasound his bladder was empty- which is great! Praise God, keep those good appointments coming!

Crazy Month

Whew! September was one crazy month! I could go on for days about all the appointments we had, but I'll give you the cliff-notes version.

Neuro-
Lewis's shunt adjustments are going smoothly. LOTS of trips to the office for them to check on everything but that should slow down again soon.

Orthopedics-
He thought everything looked good but wanted to do a hip ultrasound to make sure. Lewis's right hip is ok but the angle between his the pelvic bone and his left femur is around 58 degrees (it should be above 60). We haven't heard from orthopedics yet as to what they'll do.
Lewis's teacher at the CLC is recommending an AFO for his right foot. It is turned in and up a little bit. We've been working on it with stretching since he was born and it has definitely improved but it would be nice to get it straightened out before he can reach down and rip the brace off!
Lewis's physical therapist is recommending a nighttime knee extender since his legs are bent a couple degrees when extended. Straight knees are really important when it comes to walking so this is another thing we would like to take care of right away.
We have an assessment set up with orthotics next week to see what they think. Hopefully orthopedics will agree and write a prescription fort the necessary equipment without needing too much convincing...
I think it's hard to see your baby with plastic and bracing on. I can understand that. But I am so thankful that this is available to Lewis. My goal is to give Lewis every opportunity to reach his full potential and this is just another time when I have to get over my picture of what I thought my life was going to be like and embrace this life. Lewis has so many great resources available to him. Things that would keep kids from ever walking can now be corrected with a few months of braces or casting. It's amazing!!!


Clinic-
Oh my goodness. I don't even know what to say. I had my first experience with a doctor that I DO NOT get along with. Luckily he's not someone very important in Lewis's care. I'll tell you a few of the things he said, and you can draw your own conclusions about him:

To Lewis: "Well you're a real downer."

"Lewis's IQ will be 5 points lower than you and your husband. Here's the bell curve. You know what standard deviation is, right?"

"People with SB take about 3 years longer than average to be independent. So your husband can't turn Lewis's room into a man-cave when Lewis turns 18; he'll have to wait until he's 21."

"Doesn't he have a bottle or something?"

I could go on and on forever, but I think you get the idea. I had a really fun time filling out my satisfaction survey that came in the mail!

Therapy has been going great. Physical therapy comes to our house once a week and we go to the CLC once a week as well. I like to see the two different approaches and it's been really educational for me. I feel overwhelmed each time I go but when I try it all out at home I can combine everything into something that works well for us.

For some reason he always puts that fist in the air when he's stretching on the peanut... haha!

Appointments, Appointments, Appointments

Labor day weekend was an exciting weekend for Lewis. He made his first trip to Illinois to visit all his relatives. He did very well in the car. He had a little meltdown when we were about 10 minutes from home but he was just ready to be out of the car... and so was I. We got to see a lot of friends and family and it was so much fun to show Lewis off to everyone.

This week and next are jam-packed with appointments. Today we went to the neurosurgeon. When Lewis was in the hospital, they set his shunt to the lowest setting (0.5) in order to help his back to heal. Now that it's healed, Dr. Foody wants to start bumping up the setting. Next week we'll go back and get a baseline ultrasound of his head. Then he'll adjust the shunt to 1.0. A couple weeks after that, we'll get another ultrasound to see how he's tolerating the new settings. As long as his ventricles haven't increased in size too much, they'll probably bump it up to a 1.5. This is good news, I guess, because it means that his shunt is doing what it should and his back is healed enough to tolerate the higher pressure. But it's also nerve-wracking to be readjusting the shunt after he's been doing so well. Lewis's head circumference is in the 70th percentile... same as it was 6 weeks ago. He comes from a family of big heads, so he'll  probably always have a big head!

While I was there, I asked Dr. Foody about Lewis's stridor. He wasn't aware that he had a stridor (it bothers me that this wasn't communicated in the hospital, but that's another story). Anyway, apparently swallowing can be an issue with Arnold Chiari. I told him that Lewis swallows fine, he's just loud when he eats and sleeps. Even so, Dr. Foody wants to do an MRI. He'll wait until Lewis is at least 16 weeks old because getting an MRI before 16 weeks would require Lewis to be admitted to the hospital... and we have had ENOUGH of that. I didn't really understand what they'll be looking for in the MRI but based on that, they may send him to an Ear, Nose, Throat Doctor to do a swallow study. I hope it doesn't come to that.

After that appointment, we had another appointment in Grand Rapids that was a lot more fun. We went to the Conductive Learning Center for Lewis's assessment. Lewis will be attending the Conductive Learning Center for therapy starting next week. This is very exciting for me because it is something proactive that I can do as a mom. For those of you that don't know, I'll explain a little bit about the CLC. Conductive Learning is a practice that comes from Hungary. There are only a handful of Conductive Learning places in this country and we have one in Grand Rapids (praise God!). It's kind of hard to explain and you can learn more about it here: http://conductivelearningcenter.org/ There are a few things that I really like about it. First of all, it feels very proactive instead of reactive. They talk about how there are a lot of nerves in Lewis's body that are weak and not firing strongly. They work to make use of EVERY nerve that Lewis has available. They also work on more than just getting him to walk. It's about helping him to reach his full potential. Since Lewis has a lot more movement in one leg, one of his legs is getting a little bigger than the other. They'll work with him so that when he's an adult there will only be a slight difference in his legs, as opposed to the very noticeable difference that would occur if we didn't work on it. They will work with Lewis on everything he needs to be independent, which is our ultimate goal. It's costly, but we've prayed about it, and I think it's right for Lewis, so we will find a way to make it work.

During the assessment, Lewis was smiling, laughing, and talking (loudly!). I hope he's in such a good mood every time we're there... yeah right. She said that although Lewis is only the size of a 10-week-old baby, he was interacting and playing like a 4-month-old. She also said that Lewis had good active movement in his legs. She said that she has no doubt that he'll be walking with a cane or walker. It's nice to hear that, but I try not to listen to the "This is what his ability will be" statements... good or bad. I don't think anyone can know what Lewis will achieve in his life. He may just surprise us all! And we'll do everything we can to make that happen. When I was pregnant with Lewis, all I could focus on was all the things that Lewis wouldn't be able to do. But I refuse to think that way anymore. Now I just focus on all the things Lewis can do. Which is a lot! And when he's older and he tells me he can't do something, I'll tell him to find a way. He's already had more experiences than people years older than him. He'll be a richer person for it.

The next couple weeks will bring many more appointments. Physical therapy, CLC, pediatrician, ultrasound, Dr. Foody, Orthopedics, Spina Bifida Clinic, oh and one for me too. Yuck!

So a few prayer requests we have right now:

Lewis's shunt as adjustments are made to it.
Lewis's stridor... that it would go away before they even have to do the MRI.
That the MRI would come back with good news.
That we would see improvements as Lewis starts therapy.
That we would have the financial ability to give Lewis the therapy he needs.
That Lewis would gain weight.
Our upcoming appointments.

I'll leave you with a few pictures from the weekend. Thanks to Kelli for stepping in and taking pictures of us when a disappointing change of plans left us with new outfits and no one to take pictures of us in them. I think they turned out great!

Lewis and his cousin Rio... they weren't too happy about the picture-taking session. We didn't get a smile but we got some good faces!

Goodbye Vigilon

So the day finally came... we went back to see the plastic surgeon. We'd been counting down to August 23rd since Lewis left the hospital. Dr. Mann took one look at Lewis's back and said, "yep, that's healed." And I said, "AAAAAAAAAAAAAAHHHHHHHHHHHHHH!!!!" Ok actually I just said, "ok, good." But I was screaming and jumping inside! We knew it was healed; it had looked healed for weeks. But it was great to hear it from the doctor.

We had been changing the dressing on Lewis's back twice a day for 6 weeks. The dressing consisted of the vigilon gel sheet, a square of gauze, and a steri-drape that stuck onto the bottom of his back just above his butt so nothing nasty would get into his wound. Every time we picked him up, there were crinkling noises. And the vigilon... I had one sheet go through the washer and dryer and get permanently adhered to a towel. I had another sheet somehow get into the bathtub. I was taking a shower and the water wasn't draining so I assumed there was some sort of clog. Nope, just the invisible vigilon sheet clinging to the drain. I do have one sheet left, still all packaged up, and it's going in Lewis's keepsake box. I will not miss the vigilon, but because of it, we were able to bring Lewis home.

We're really enjoying this time. Lewis is just a little baby and he acts like all the other little babies. He's not walking... but neither are the other babies his age. We haven't gone to any of our appointments yet. No orthopedics, no urology... he's done healing and we don't have much else to deal with yet. We're loving it! I really wish summer would last another 3 months... I spent an entire month in a hospital so this summer felt way too short... but we're enjoying it while it lasts! Today we had a picnic with Kevin and Sarah, who also had a baby about a month ago. Sarah and I have been enjoying her maternity leave, we've already made and frozen some baby food. It's going to be a fun 6 months before she has to go back to work! Here are some pictures from our picnic. We got a new camera... so I was kind of snap-happy... :)

Ready for the picnic

Wish I had my eyes all the way open...

And a new onesie... because of a minor diaper-disaster.

Good thing I had another one on hand.

Oops... I guess you might like to be able to see...

He LOVES being outside!

Aww!

Lewis is sleeping... and Abigayle is awake. They were never awake at the same time. Which is why this is the best picture we got...

Also, Lewis has officially abandoned his pacifier. He only wants his thumb now. It is really nice not having to keep a pacifier with us at all times. And it's nice not to have to try to catch it before it hits the floor when he shoots it out of his mouth. But... we no longer have anything to use as a "plug." Come on, you know you all do it. When we're in church now and he fusses it's like, Quick! Shove his thumb in his mouth!

2 Months Old!

Happy Birthday Lewis! Sunday was Lewis's 2 month birthday and it also marked a month of being home. It's crazy to think that we've been home now for longer than we were in the hospital. The time in the hospital crept by so slowly while the time at home has gone by so fast! Lewis has done a lot in the last month. A lot of firsts... tonight will be his first Taste of the Northside... yum yum. We're going to walk there which is exciting because the stroller has cupholders... leaving both hands open to carry food!

We spent last weekend in Pentwater with Coleman's parents and sister. Lewis is becoming quite the beach bum! It was also our first overnight trip with Lewis... and let's just say we're glad that he has his own room at home. He's not a quiet sleeper. We had a lot of fun though and we really wish we could have stayed longer.

We had our first meeting with Early On this week. They came to the house to assess Lewis and have me fill out some paperwork. The assessment went really well. Lewis is doing everything he should be doing at this age and more. They said that if he didn't have Spina Bifida, he wouldn't qualify for Early On. But luckily SB automatically qualifies him. We have one more meeting to fill out more paperwork before the Physical Therapist will start coming weekly in September. While she was assessing/playing with Lewis she seemed pretty impressed with Lewis's leg movement. I'm not sure if we've ever talked about it on here, but Lewis does have movement in his legs. And it's not just twitches. His right leg kicks all over the place. Not like your average baby, but sometimes I do have to hold it down so I can change his diaper. His left leg doesn't move nearly as much. It's hard to tell what movements are actually coming from the left leg and which are just the left leg getting tossed around from the movement on his right side. The Physical Therapist held his right leg down to show that his left leg does move independently. I'll take any movement I can get! Movement means that things are connected and messages are getting sent so we have something to work with!! I'm not ashamed to admit that I tickle Lewis A LOT... half because I like to see him smile... and half because I like to see him kick his little legs!

Next week Lewis has an appointment to get his tongue fixed. He is tongue-tied so we decided to get it fixed so he can eat a little easier. It will also help with speech as he gets older. Lewis's doctor doesn't do it himself in the office so we're going to an Ear/Nose/Throat doctor to get it done. While we're there we're going to have them check out his stridor. It doesn't really affect him that much but we did find out that it can be related to Arnold Chiari malformation (more SB talk... basically it just means that the stridor could be related to SB.) Don't google any of this or you'll see scary things! Like I said, he doesn't seem bothered by the stridor so I don't think it's a big deal, they're just going to check it out since he'll be there anyway.

August is turning out to be a fun, busy month. Where has the summer gone? We're looking forward to lots of visitors before it's over!

On the Porch in Pentwater

Sometimes Lewis does stretches outside... while also doing his best impression of a zombie...

Sleepy baby... and look at all that blonde hair!

Hanging out on the beach with Dad

He loves to look out at the Lake... but it's just so bright!

Watching his tugboats go around and around... I've probably wound that thing 200 times in the past week.

Lazy afternoon in the backyard

Recently Lewis has started sucking his fingers. Mainly his index finger... unless his thumb is more convenient.

But if he accidentally loses it, he gets so sad

Look at that strong neck!

Light on News, Heavy on Pictures

Wow we are really slacking on the updates... sorry! We don't really have much to talk about but we have a lot of pictures to share! Before we get to those, I'll tell you what Lewis has been up to the past week or so. My parents and sister came up to visit us for a couples days so we decided to take Lewis on his first trip to the beach. He loved it! Actually he slept the whole time... but I'm sure the sound of the waves was soothing! We passed him around and got his first beach pictures... maybe next time he'll be awake for them.

We also had another appt with neurosurgery. This time the appointment was with Dr. Foody. A couple good things came out of that appointment. Dr. Foody gave the ok to hold Lewis upright. We had been doing that for short periods of time, but now we can do it whenever we want! It's exciting to be able to hold him on my shoulder! Dr. Foody also commented that Lewis has good leg movement. We love to hear that! Dr. Foody also said he doesn't want to see Lewis again for 4-6 weeks. YES! I was concerned before we went because I had noticed his head circumference had gone up a little. (I measure it crazy-often) Dr. Foody wasn't concerned and I just have to remind myself that heads grow.


So Lewis is getting very close to consistently sleeping through the night. He slept at least 8 hours for a couple nights in a row. He'll do it for a few days then wake up once the next night. I'm sure pretty soon he'll be sleeping till morning every night! He also has been smiling and laughing a lot. We need to get a picture of it because I'm pretty sure it's the cutest thing I've ever seen!


Like I said, not much news... but I guess that's a good thing! We do have TONS of pictures though, so enjoy! There will be many more soon, I'm sure!

So bright!

So we're a little late starting the monthly growth pictures. We want them to all be in this chair but he can't exactly sit up yet so he's kind of just propped up there. Yes, he started to fall over after this picture. And yes, I am standing right above him ready to catch him when he started to tip. Yes, he hated it.

Chilling with Dad

Doesn't quite know what to think of the Bumbo seat yet...

Family photo!

Love that little smirk!

Our little elf!