Crewe's First Day of School

It's true, our baby Crewe is an official preschooler. Sniff, sniff.

Chris and I were hesitant about sending our littlest guy to school for the first time, but to Crewe there was no hesitation. I mean none. Crewe was so excited about his first day that he woke up at 5:30 this morning. When we walked to the end of the drive to wait for the bus, he watched like a hawk for the beloved yellow limousine that he no doubtly dreamed about for the past week.

The moment he caught a glimpse of the wheels on the bus, he yelled "there it is!" and made a mad dash toward it. When the doors opened, he stepped up without taking a single look back. Chopped liver, that's what we are when the bus is around.

"there it is!"

Like every mom who can't believe her baby is going to school, I naturally jumped in the car and followed the bus to school. At school, I found the principal and preschool teachers excitedly greeting the kiddos in the 95 degree weather (it was only 9 am). Crewe took a spot in the shade next to the school nurse while waiting for his classmates to arrive -- classmates like cute Mathew. Even though Crewe and Mathew had never met before, Mathew gave Crewe a big hug immediately upon seeing him and then grabbed his hand. And there it happened, Crewe made his first school friend. Mathew and Crewe were still holding hands when I walked away from the school entrance!
The preschool staff have been so impressive. They really put me at ease when the entire group, including the bus driver and bus aide, showed up this past Friday for my training session on how to care for Crewe's trach and handle his allergic reactions. Hopefully, they will never have to use that EPI pen or do an emergency trach change, but if a situation arises, they know what to do.

I'm going to miss my little guy during the 2 1/2 hours he's gone Monday - Thursday. With five classmates, one teacher and two aides, I have a feeling he'll not even know I'm gone. Crewe, I can't wait to see the fun creations you will bring home in your first backpack!

Stepping into Three!

Mr. Happy Go Lucky officially stepped into 3 on Sunday! And stepping is a big deal around here. Since Crewe began walking a few months ago, he's taken off in every way -- a quickly expanding vocabulary, multiple word sentences, running in parking lots (a good problem to have) and a growing attention span.

Having recently celebrated Cal's birthday, this little guy knew exactly what a birthday is about and made his wishes clear.

First, a blue birthday hat. Check!

Second, a Christmas tree with lights. His obsession with Christmas and lights has not dulled even after six months. A Christmas tree is the only gift he wanted. Check!

Third, a trip to the Train Park. Check!

Next, a bouncy session with his brother in the bounce house. Check!

Finally, ice-cream (aka dairy-free frozen yogurt). Check!... and

... opening (and playing with) presents! Check!

What will the next year bring?!

Cruisin' Crewe

Crewe has been cruising around the furniture for sometime, but has not been interested -- at all -- in giving up the security of having something to lean on. His physical therapist showed up a few weeks ago with this rear facing walker and he's loving it. He's becoming a bit of a speed demon in it. Hopefully he'll be walking independently very soon. We are thrilled to finally see him moving on his feet!

Crewe turns Two!

Crewe spent his second birthday in Breckenridge with 20+ of his closest Calvert cousins and loved ones. He has come far from his subdued, soundless days as an infant. Crewe is full of life and sounds. His magnetic personality draws people to him and then he melts their hearts with his expressive eyes and contagious smile. He is the sweetest little snuggler. He has a fascination with light and everything in the sky. He's got an arm and surprisingly, very good aim when he throws just about anything. Crewe-ton loves books, music, making noise, going places and wrestling with his brother. He is the best little eater and never misses a snack or a meal. Broccoli, asparagus and fresh pineapple are some of his favorite treats. Crewe is a joy to have in our family.

A birthday serenade by cousins Ashley and Callie.

Opening gifts with Aunt Jenny.

Checking out the birthday loot with KK and Calahan.

Remarkable Progress Continues

Since undergoing treatments with Dr. Tennant in February (and continuing them at home), Crewe's progress has been nothing short of remarkable.When we saw Dr. Tennant in February, Crewe had a 50% delay for his age in his language development and fine motor skills and a 70% delay in his gross motor skills.

Just three short months later, our baby Crewe has grown into a little boy. A developmental pediatrician recently evaluated him and found his language development and fine motor skills to be slightly ABOVE his age level and his gross motor skills at just less than a 50% delay! Crewe is cruising around the furniture and crawling up and down stairs. I’m sure walking isn’t too far off. He’s also starting to put words together — both in speech and in sign language.

We are so blessed to have been led to Dr. Tennant and Crewe's extremely talented therapists... and doubly blessed to have the support that comes from the prayers and love of friends and family.

More Progress

Crewe's treatments seem to be especially effective on his hypotonia. Yesterday morning we caught him taking steps on his own around the coffee table. He even rounded the corner without falling!

Just two more days of therapy here in Dallas and then we're headed home to continue treatments with the biomodulator.

Early Progress

Just 36 hours after Crewe's first treatment with Dr. Tennant, we are seeing results. Yesterday morning he pulled himself into a standing position for the first time ever!

He has repeated it a few times since and it still surprises him when it happens. He's so excited to be standing that he temporarily forgets how to sit back down.

On to another day of therapy...

Crewe's Leap

Crewe's condition has opened our eyes in so many ways, especially in how we think about and take care of our bodies. In October we learned about a fascinating approach to medicine the blends the best of western and eastern medicines. We took Crewe to Utah shortly after to learn more about the treatment options and see how he would respond to a few treatments.

Our main objective was to reduce the swelling in his face and neck so that his airway would open enough that he wouldn't need the trach. We had no idea that it would help his development. In the week (singular) following the treatments we saw a huge leap in his development. By "leap," I mean that he:

• voluntarily puts weight on his legs when in the standing position (first time in his life)
  
• started crawling on his hands and knees instead of just commando style
  
• immediately began signing 10-15 signs
• makes more sounds and can even say a few words
  

For the first time, Crewe is beginning to close the 50%+ delay in his motor skills. Every single one of Crewe's therapists (2 physical therapists, 1 speech, 1 occupational, and 1 developmental specialist) has remarked at how unusual his progress has been since the treatments. There are also promising indicators that the treatments may help Crewe overcome his food allergies.

We are so encouraged by what we've seen that we are in the process of making arrangements to spend two weeks in February with the medical doctor in Dallas who is pioneering this approach. More to come!

Good Bye Soy, Hello Hemp

We bid farewell to soy milk last week after learning about the many dangers that soy formula and soy milk pose for infants and toddlers. Frankly, after reading much of the easily accessible research on the topic, I cannot understand how soy formula is even allowed to be on the market -- especially for baby boys.

Trying to feed a little guy with so many food allergies is harder than taking care of a baby with a trach. After trying many different "milk" products and dietary changes, we finally found a milk that Crewe actually likes AND gives him the hydration and nutrition that he needs. Hemp it is! Hemp Vanilla, to be exact.

Until a few weeks ago, I hadn't even heard of hemp milk. I was amazed to learn how much nutrition is packed into the seeds of the hemp plant (a distant cousin to the marijuana plant). It has some of the fat that a 1 year old needs, a fair amount of protein and more calcium than cow's milk.

For those interested in the soy issue, here are just a few of the disturbing things I found in my research:

Soy formula/milk:

• contains toxic amounts of the metal mangenese. The excess metal does not work its way out of the body, but collects in the brain and can alter the way the brain directs traffic. It has been linked to autism and aggressive behavior later in life.
• blocks the absorption of iron, calcium and zinc
  
• contains estrogen-like compounds that depress thyroid function and can alter growth patterns, inhibit the effects of male hormones, and cause sterility (soy formula is the equivalent of 5 birth control pills each day)

Don't take my word for it, just do some simple google searches and you'll see for yourself.

The Latest on Crewe's Development

Along with Crewe's diagnosis of cystic hygroma, he has a condition called hypotonia (generalized low muscle tone). The combination of the two means developmental delays in his motor and speech skills (fortunately, there is no delay in his problem-solving skills).

For the past seven months Crewe has been receiving weekly speech, occupational, physical, and developmental therapies to help him progress. These therapies are a big investment in terms of time, funds, and emotional energy, and they are finally beginning to pay off. Crewe's motor skills are now at the level of an 8 month-old.

For the first time in his life he is voluntarily putting weight on his legs. He recently started commando crawling. His trunk and lungs are also finally strong enough to allow him to clear his trach on his own. A year ago we were suctioning Crewe's trach 20-30 times per day. Now, we suction him just 2-5 times per day.

Crewe was recently seen at the Craniofacial Clinic at St. Joe's in Phoenix by a number of well-respected pediatric specialists including oral surgeons, dentists, plastic surgeons, geneticists, and a head & neck surgeon. They recommended several actions, including seeing a developmental pediatrician and geneticist. They really wonder if there is more going on with Crewe than what meets the eye.

Last week we met with the developmental pediatrician they recommended and she was fabulous. She suggested:

• These fancy shorts to help align his hips and allow him to get in the hands and knees position
• Firm, high-topped shoes to provide ankle support and hopefully reduce the chances of Crewe needing leg braces to walk
• Hippotherapy (horseback riding with a physical therapist) when it gets cooler
• Some special stretches to get his shoulders and back in proper alignment (it's hard to be aligned when one half of your face is heavier than the other half)
  

Already with just a couple of days in the magic shorts and high-top shoes, he's much improved. We feel like Crewe is on the brink of even bigger progress. As he has become mobile and more able to get to the things he wants, his excitement for live has been magnified. In fact, he has gone down to just one nap a day because he just doesn't want to miss a minute of exploring.

Look Who's One!

Happy Birthday, Crewe! What an incredible journey this last year has been with our Crewe-ton. There's no way we could have imagined the amount of joy, light, and peace this little guy would bring into our lives in such a short time.

Crewe has come a long way from his complicated delivery, maze of tubes, and soundless months. We are so proud of the way he has handled his multiple procedures, dealt with food deprivation (for anesthesia), and endured literally thousands of suctioning sessions. Through it all Crewe has kept a smile on his face. We have certainly seen and still see the hand of the Lord in his life and our lives. His hand often appears through the kind prayers, words of support, and selfless service of others.

Crewe is a happy, go-lucky kinda of guy, and that's the kind of birthday celebration he had. After extra loves and attention in the morning (he never gets enough because he's just so low mantainence and doesn't demand anything), we took him to see the ducks and have lunch at a Mexican restaurant near our house. Later we followed up with gifts and cupcakes with soy frosting (darn that milk allergy).






Crewe loved the tissue and wrapping paper as much (if not more than) the gifts themselves.

Oh how Cal loves to "help" his little brother.

Life is good when you can have cupcakes with Dad.

7 Months Young

Has it really been seven months (almost eight)?! Crewe's body and mind continue to grow like crazy. Here are a few highlights from the past two months:

• The little guy is now sporting SIX teeth. All of them have come in within the past two months. Without the drooling, we'd have no idea that he was teething because he doesn't even complain. Two more teeth are set to breath through any day now.
• Crewe is learning to sit unsupported (see the photos above). Gravity wants to pull him to the right, but he's learning to balance. He also loves sitting in his bumbo.
• Baby food and cereal have become mildly interesting, which is a big step forward from the long not-interested-at-all phase. His cystic hygroma causes his tongue and base of tongue to swell so learning to eat with a spoon is a big deal. It takes 30+ minutes for him to make it through one container of baby food.
• Sleeping through the night is finally part of his regular routine (proof that prayers are answered!)

Crewe is such a happy, easy going baby. He can fall asleep anywhere and soothes himself by sucking his thumb. I have to make a conscious effort to hold him throughout the day because he just doesn't fuss or complain. 

We are still not hearing sounds from the little man. We are looking for a speech therapist and feeding expert who can help him learn to make babbling positions with his mouth and tongue. I want so much to hear him laugh some day soon. He's got a great sense of humor and when he laughs his whole body bobs up and down.

Little Crewe-ton Turns 5 Months Old

Crewe hit his 5 month mark earlier this month and continues to grow like a weed. Despite his physical challenges, he seems to be right on track with other babies his age (except for making sounds). Weighing in at 15 lbs, 3 oz, Crewe lights up whatever room he is in with his contagious smile. Here’s what our little Crewe-ton (pronounced “crouton”) is up to currently: 

• Has completely given up the pacifier for his thumb and makes the loudest sucking sounds 
• Rolls from one side to the other and sometime over onto his tummy
• Loves to grab his legs and bring them up to his face, and has he plenty of fingernail marks to prove it
• Is finally putting weight on his legs
• Likes to bring things to his mouth and especially enjoys “chewing” on cloth diapers
• Tries to hold his bottle
• Totally enjoys the bumbo
• Can fall asleep almost anywhere – on his playmat, changing table, in the bath – but his sleeping through the night thing has been limited to a one-time event so far (argh!)
• Loves to watch TV (so not allowed at this age!) and will move himself into any position necessary to catch a glance
• Is developing a great sense of humor. He loves to laugh and even though we can’t hear him laugh, it’s so fun to watch him smile while his chest moves up and down.
• Watches Calahan intently, but seems unaffected by his drama, which can be extensive

Why I'm Posting at 5:00 am

So I just had one of those moments that every mom can relate to. I woke up in a panic and rushed to my baby's crib to make sure he was still breathing. You see, it's almost 5:00 am and he was due to eat over 2 hours ago. After feeling his chest rise and fall like it should, I came to my senses and happily realized that our baby Crewe has slept through the night! Can you see me dancing for joy at my computer? He went down last night at 8:20 and is still sleeping! Will we be this lucky again tonight? I hope so!

Crewe's Blessing Day

Sunday, September 28th was a beautiful day for our family. We were joined in our home by members of our extended families and our bishop for Crewe's baby blessing. 

During this special occasion we were reminded again of what a special gift Crewe is to our family. We all felt an added glimpse into his strong, loving, and wise spirit. The blessing Crewe received told of how his condition is a blessing to him, that he has a specific purpose in life, and that he has many talents to develop. Crewe was also promised that despite his condition, he will be able to realize every righteous desire he has in his life.

The longer I am a mom, the more I realize how essential and important the family unit is to God's plan for the happiness of his children. I thank Him for blessing me with a wonderful husband, two incredible children, and supportive extended family and in-laws.

3 Months Already

We can pause live tv and satellite radio, but where’s the button to pause life?  I’d love to freeze my boys in time because time is simply going by too quickly. Crewe has already grown out of his 0-3 months clothes and is on the verge of going to size 3 diapers.

Crewe’s personality is starting to come alive.  He’s such a happy baby, smiling whenever he makes eye contact. He loves to be talked and sang to and will gaze into my eyes as long as I’m looking at him. He also loves to sleep next to me.  He’s becoming more and more aware of Calahan and has reserved the “worried look” for him instead of his dad.

Tickling his head and patting his bum are sure ways to get him to melt like butter and go to sleep.  He’s a very sound sleeper, surviving the vacuum cleaner and even Calahan’s 5:00 meltdowns. Tummy time is still a favorite and he’s quickly gaining strength. He can roll from side to side, but doesn’t seem interested in rolling over yet.

Crewe doesn’t seem to know that he has any swelling in his face or even a trach. He is very patient whenever I suction his trach or clean around it and change the ties. His next procedure has been moved up to October 2. At that time he will have an MRI and laser surgery to remove some of the abnormal tissue around his voicebox.

Baby Crewe Turns 2 Months Old

It’s hard to believe our little Crewe is two months old today.  Despite spending 30 days of his short life in the hospital, he is showing amazing development and passion for life.  He is also gaining weight at a very healthy pace, putting on 17 ounces in the last two weeks alone to bring him to 10 pounds 3 ounces. 

 Here are some of his highlights: 

• LOVES to be held
• Smiles a lot, which makes his cheeks get even bigger
• Holds his head up unsupported
• Actually enjoys tummy time (unlike his older brother did)
• Eyes are turning really blue and getting bigger
• Very expressive with his face (he can often be seen giving his dad the “worried look”)
• Is super alert and loves to follow faces and noises with his eyes 

So, what’s next? 

Tomorrow Crewe’s case will be presented to 12-15 doctors that form the Vascular Malformations Clinic at Phoenix Children’s. The doctors, ranging from pediatric plastic surgeons, dermatologists and orthopedic surgeons to interventional radiologists, will collaborate and recommend a long-term treatment plan. 

The “clinic” was just formed a few months ago and is one of only a handful in the country that focuses on anomalies like Crewe’s. One of the lead doctors in the group comes from the Children’s Hospital in Philadelphia, which is known for its treatment in these rare cases. We feel so grateful that Crewe’s case was accepted by the group. 

Then, on Thursday Crewe will go in for another round of sclerotherapy at Phoenix Children’s Hospital. This round is scheduled as outpatient so we should be able to avoid an overnight stay at the hospital. 

As Chris and I reflect on the past few months, we feel so thankful for friends and family who have gone above and beyond in lending us a hand. Your prayers have been such strength and we know that Crewe’s progress is a direct result of faith. Thank you.

A Healthy Appetite

After nearly two weeks of receiving his food through a feeding tube, Crewe began taking his food through his mouth a few days ago.  He must be trying to make up for lost time because the nurses often find themselves refilling his bottle. 

Crewe is also a great nurser.  I was worried that the window had closed on his desire and willingness to learn to nurse, but he latches right on every time I'm at the hospital.

The results of his healthy appetite are showing in his weight.  He's now up to 8 pounds and 2 ounces.

Every day that goes by seems to bring improvement for Crewe.  He doesn't seem to notice that the trach tube is there.  We changed the tube yesterday for the first time and he didn't even cry. 

A New Baby Boy

Crewe Holmes Calvert was born Thursday, June 5th at 6:32 pm. He weighed in at 7 pounds, 5 ounces and measured 20 inches long.

Crewe is a sweet boy who has already overcome much in his young life. He has a rare birth defect called cystic hygroma. The cystic hygroma causes fluid to build up in hundreds of pockets within his face and neck and can cause a serious obstruction to his breathing.

To manage issues with his airway at birth, he was delivered via risky c-section called an EXIT procedure. Crewe had quite the birthday party... there were 12 doctors and 10+ nurses in the operating room. Fortunately, the procedure went exactly as planned.

Because of Crewe's delicate condition, he is in the Newborn Intensive Care Unit at Phoenix Children's Hospital. It was torture to leave the hospital without our little guy, but we hope to bring him home soon.