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!