Our Two Sons

Calahan (3 1/2)

Our baby has turned into an outgoing, potty-trained and booster-seat riding little man. He talks in complex sentences, dresses himself and loves to opens doors for girls.

Calahan is independent, social, bright and imaginative. He loves to learn, giggle and is a natural negotiator. He loves to help me in the kitchen and Chris in the yard. Cal is tender-hearted, affectionate and polite. He is my little snuggler and loves to climb in bed next to me in the early morning.

Cal is very much an oldest child -- he has perfectionist tendencies, enjoys bossing others around (including me) and may not always be right, but he's never in doubt! He enjoys preschool three mornings a week and would go every day if he could.

Age three is my favorite age so far. Cal is constantly cracking me up with his commentary on what's going on around him and his imagination. He loves music and has a cute singing voice. I love hearing him belt Jingle Bells and Dominick the Donkey, complete with all the "heys!"

Crewe (2 1/2)

Crewe is loving being the baby of the family. In fact, he generally loves life -- he is constantly smiling and finding a reason to laugh. He entertains himself - sometimes for hours at a time - and exudes a contagious feeling of happiness and goodwill wherever he goes.

Crewe loves to rough-house with Chris and Calahan. He enjoys playing with Cal and older children. He loves music, laughing and doing activities with his hands. His expressive eyes will make anyone's heart melt.

Little "W" (after his great-grandpa) also enjoys food more than anyone else I currently know or have ever met. Crewe is usually the first to start eating and the last to finish. He is the healthiest eater of us all and begs for bananas, tomatoes and asparagus. I guess that's what happens when you are allergic to milk, eggs, soy and nuts! He calls digestive enzymes "candy."

Crewe has been remarkably healthy since we implemented the advice of Dr. Tennant, an innovative medical doctor in Dallas. In fact, a few weeks ago he came down with his first bug in 9 months. What normally would have been a 7-10 day sickness involving a trip to the ER at Phoenix Children's complete with an IV and meds was handled at home without any meds. Crewe was completely back to normal within 48 hours. He has sure come a long way.

Crewe still has his trach and doesn't seem bothered by it at all. He lifts his chin when we need to suction it and agreeably (usually) lets us change the ties each day. His speech is really starting to come along. He is turning into a genuine talker, adding new vocabulary words all of the time.

Therapy is also still a major part of Crewe's life. He has physical therapy twice a week, occupational and speech therapy once a week and a developmental specialist visit weekly. We are blessed to have such outstanding therapists. Watching his motor skills progress is truly exciting.

And there you have it, our boy update!

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.

Home, Himself, and Happy

Crewe arrived home from the hospital yesterday! He is smiling, crawling, and acting remarkably like himself. Thank you for the many prayers offered in his behalf, his quick recovery is no small miracle.

Three times was not the charm we were hoping for when we took Crewe to the ER at Phoenix Children's Hospital on Saturday for the third time last week. Instead of just fluids, this visit bought him an admission ticket to the "trach floor" of the hospital. In addition to being dehydrated, his oxygen saturation levels were low and he required oxygen.

During his Wednesday visit to the ER, Crewe tested positive for a nasty respiratory virus that has been making life miserable for a bunch of folks in our area. To most, the metapneumo virus manifests itself as a bad cold and cough. However, to babies, especially those with trachs, this terrible RSV cousin can be life threatening.

The ER and floor doctors painted a scary picture Saturday night as they reviewed the results of his Wednesday trach culture. In addition to the virus he was already fighting, they found three organisms growing in the culture. The docs told us that his situation was likely life threatening and to expect him to be in the hospital for 7-14 days. They quickly ordered two very powerful, broad-spectrum antibiotics to be given immediately via IV.

The extreme reaction of the doctors was disturbing to our "parental intuition." Given that one of the antibiotics prescribed was the medicine that permanently destroyed the little hairs in my grandpa's ears and made it necessary for him to walk with a cane for the rest of his life, I was especially uncomfortable with the treatment recommendation. None of the doctors could actually confirm that he had a bacterial infection, but they wanted to treat the organisms like they were.

As parents without medical backgrounds (other than what we've learned since Crewe was born) we found ourselves in a very frustrating position in trying to reason with the doctors. We were told that one of the organisms in particular is so dangerous that if we didn't respond immediately with the heavy duty antibiotics, he would be at immediate risk of organ failure and ultimately death. Very. Scary. Stuff.

At about 2 am we came to an agreement where they would administer a single low-intensity antibiotic until the infectious disease doctor could evaluate him the next day. It turned out that our opposition to the doctor recommendations was inspired as the infectious disease doctor said the dangerous organism the other doctors were so worried is actually present in all trachs and should not be treated. Phew!

Thanks to many prayers and the assistance of the medical device we got in Dallas, Crewe made a quick recovery. The doctors were in disbelief that his lungs were doing so well. They ordered an additional chest x-ray because they didn't believe his lungs could be clear as the x-ray indicated. They also switched out a few stethoscopes searching for one that "worked" because they weren't hearing the wheezing and crackling they expected. It's nice to have our baby home.

Coughing + Trach = ER Visit

Coughing is uncomfortable, but not usually serious. Trachs are serious, but not usually uncomfortable. Together, coughing and a trach mean serious discomfort and TROUBLE.

Serious trouble showed up at our house at about 10:00 on Sunday night. This trouble had not visited for several months, and our poor memories were quickly reminded of how demanding this uninvited guest can be. Each cough causes the trach tube to rub against the inside of the windpipe. After several coughs, this rubbing causes soreness. After even more coughing, the rubbing leads to a raw windpipe and eventually blood. Oh, yes and uncontrollable coughing also results in lots of vomiting.

After a night of constant coughing and suctioning and a day of more coughing, lots of vomiting, no fluids and a fever that spiked 105, I took Crewe to the ER at Phoenix Children's. I was hoping to make it at least a year since we last visited that place together, but we only made it 11 months.

The ER was completely slammed and we waited hours for someone from the IV team to come give Crewe an IV for fluids. In the meantime the doctor gave him a dose of steroids that significantly reduced his coughing and let him fall asleep. After drifting in and out of sleeping for a few hours, he woke up happy, drank 4 ounces and handed the doctor a book he wanted read to him. Those 4 ounces got him off the IV list and we made it home by 2:00 am this morning.

Crewe is clingy, but happy to be home. He hasn't spiked a fever at all today and is coughing less and less.

Oh the Weather Outside is Frightful

But the fire is so delightful.

Who would have thought that the first time the boys would see and feel snow they would be in Dallas Texas? Crazy! And the snow is still coming down (photo from 9 am).

The doctor's office closed at noon today because of the weather so we were only able to do one treatment. We're scheduled to fly back to Phoenix tomorrow morning and we're crossing our fingers that the weather with cooperate.

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.

Sunshine in the Cold

We whimpy Arizonans have been starved for sunshine since we arrived here in Dallas almost a week ago. The weather has been cold, overcast and wet. While the temperatures haven't improved, we had some beautiful rays of "sunshine" this weekend.

First, Grammy arrived on Thursday night. She came to help with the boys while I was in a two-day training for a medical device and Chris took Crewe in for his twice daily treatments. She was such a great help and the boys especially loved having her around. Crewe cried when she left for the airport earlier this evening.


Second, Chris and I got to go out with the Clawsons on Saturday night. Carrie is a former college roommate of mine and a long time friend who lives in Dallas. We went out for Texas style BBQ and enjoyed catching up.

Third, the smiles that come from visiting the clearance aisle in the Walmart toy section. Chris picked up this little drum set there for $5. The boys have had a blast banging on it and we aren't going to feel a bit bad when we leave it here.

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...

Hello Texas!

Monday was a very long day, but we and all of our bags made it to Dallas safely and in time for our 2:30 appointment with Dr. Tennant. We underestimated how taxing the traveling and change of schedule would be on the boys and poor Crewe ended up in complete meltdown mode during his appointment.

Even though Crewe hit the wall at the doctor's office, the appointment was very productive. We are very impressed with Dr. Tennant and appreciate his gift for explaining complex concepts in simple terms. His assessment of Crewe revealed a few things:

• Crewe's overall energy level is only about 50% of where it should be
  
• His thyroid is not healthy and is the primary cause of his low energy
• Soy (formula and milk) and all of the abnormal activity going on around is thyroid are the likely cause of his thyroid issues
• Crewe's food allergies are directly related to his lymphatic malformation (cystic hygroma) and will only improve as his lymphatic system improves
  
• As long as his energy is low, hypotonia and the associated delays in his motor skills will continue to be a problem

Crewe's treatment plan includes taking supplements, sitting next to a special light twice daily and receiving biomodular therapies. We make two visits daily to the office and continue treatments nightly at the hotel.

More to come later.

Dallas or Bust

It's T minus 2 for our big trip to Dallas. On Monday morning we fly to the Lonestar state for two weeks of intense therapy with Dr. Tennant. We are feeling a variety of emotions as we prepare to go. We feel:

• Gratitude to our Heavenly Father for leading us to this path of treatment. It's true that God usually answers our prayers through others, and without the Pack's concern for Crewe, we wouldn't even know this treatment option existed.
  
• Love & Appreciation for our family members and friends who continue to remember Crewe and our family in their thoughts and prayers and who so selflessly share their time and resources. It is only through the generosity of our family and friends that Crewe is able to receive this therapy at this time.
  
• Excited about the potential progress that Crewe will make and the things we will learn.
  
• Nervous about being in a hotel for nearly two weeks with our two little guys. Cal and Crewe are generally very adaptable, but we've never been away with them for such an extended period of time. (Also a little nervous that we might not fit everything we need into our suitcases!).

We will do our best to post periodic updates while we are gone. Dallas, here we come!

The Pair that Keeps the Colds Away

Meet two new good friends of our family: Mr. MMS and Mrs. Citric Acid. Together they have kept colds and other viruses from getting us down this season. When combined, they create chlorine dioxide, a natural and powerful germ killer. Unlike antibiotics, the MMS combination kills only the bad cells in your body (cells with a PH less than seven).

We were introduced to MMS in October when Crewe was undergoing treatments in Utah. Had it not been recommend by someone I trust, I probably wouldn't have tried it on my own. It just seemed too good to be true. However, when I started coming down with a cold two days before Thanksgiving I was desperate and decided to try it. The cold never hit. Since then, it has stopped at least two colds from hitting Chris full blown and at least that many from the boys. Crewe hasn't been sick for months which is such a huge blessing in so many ways.

Calahan is one of those kids that gets an ear infection after he has a cold and even after getting a a mild cold recently the MMS stopped it from turning into an ear infection.

You only take it when you feel something coming on. It's safe for babies and kids over 25 pounds. I have found it online only. Crewe's doctor recommends the Ocean Labs brand. You can get it here. If you're interested, leave a comment and I'll email you the doctor's instructions on mixing and dosages.

Water, Boots and Nuts

We got drenched with rain last week and are getting another dose of it today. Rain in the desert is actually a very cool sight to behold. The washes, which normally are dry beds, turn into raging rivers of tan water and puddles develop everywhere.

Cal couldn't resist the appeal of the puddles while he was with me at a YW presidency meeting last week. He and his two-year old partner in crime decided to sneak out of the house while we were meeting. By the time we discovered the boys had escaped, Cal had soaked his jeans and was having the time of his life. He was literally dancing in the biggest puddle he could find. No coat, no boots, just his little converse shoes.

So with Cal shoeless and wearing borrowed pants and socks we left the meeting to pick up a few necessary items (like diapers) at Target before the roads flooded. While in the diaper aisle, Cal began pointing while saying "cute boots, cute boots, mama." When I looked up I was sure he was pointing to these beauties:

But, alas, he was talking about these Transfomer things.
He was so excited about the boots and just giggled when I let him check them out. After he looked at me with his big blue eyes and asked for them, I noticed they were on clearance (imagine those cute boots, on clearance?). And so, Cal got his "cute boots." And now, he wears them everywhere. I don't mind a bit because he can put them on and take them off himself!

As if Cal didn't get enough of the water during the storms, he screamed out "I WANT water" at the top of his lungs during church on Sunday. And then he shouted it again. And again. Talk about embarrassing. His nursery leader mentioned that she was glad to hear that he stands up for himself because he's always so polite and sweet during nursery. Really? If I didn't know her better, I'd swear she was confusing Cal with another boy. Our little Cal can be a sweetheart for sure, but we don't see much of his quiet, unquestioning side. Maybe we'll sit next to Sister G. next Sunday so we can see the angel Cal...

This week another food was added to Crewe's growing list of allergies - nuts. There was no blood or muscle test this time - just big brother sharing his snack of cashews. It took only a piece to do him in. All of the usual reactions kicked-in: swelling, hives all over his body, itchy face and airway and several rounds of vomiting. At times like this I am SO grateful for the trach because I know he has an open airway as long as the trach is clear. This guy is such a trooper.

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!

Where have we been?

We have spent much of the last week here...
in the beautiful valley of my ancestors aka Eden and Liberty, Utah. My amazing cousin Josh lives here and his family introduced us to a possible non-invasive treatment option for Crewe. We went to learn more about it and see if showed any promise of being effective for Crewe's condition.

Crewe underwent diagnostic testing and his first treatment on Monday. Treatments continued daily through Friday. Measuring Crewe's progress is difficult since he can't describe to us what he feels. We haven't noticed any significant change in the size of his face, but we have noticed a small reduction in the size of his tongue and an increased ability to stand for longer periods of time. It's likely that he needs more treatments in order to see the real potential of this medical approach. We are considering going to Dallas to meet with the doctor that developed the approach.

While we were in Utah we got to spend some quality time with my family and extended family. More to come on those adventures...

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.

Allergies and Lymph Nodes

Since Crewe's condition is so rare there is not a lot of research that helps us to know what to expect as he progresses. Every 6-8 weeks it seems like we have at least one new medical learning or happening that sheds a little light on what cystic hygroma means for our little guy. Here's what we've learned over the past couple of weeks:

• In addition to milk, Crewe is allergic to egg yolks, egg whites, and wheat. His RAST test even showed that he has a mild soy allergy (slightly alarming since he's on soy milk/formula). We haven't tested for peanut allergies yet. There is no history of food allergies on either side of the family so we are thinking this has to be somewhat related to his condition. Seems to make sense since the lymphatic system is part of the immune system and allergies are the result of an overactive immune system. We are hopeful that he will outgrow these allergies. My creativity is being tested as I search for a variety of things I can feed him.
• The body is capable of "growing" new lymph nodes practically overnight (rare, but possible). Two nights before we left Colorado, Crewe woke up screaming about 1:00 am, which is highly unusual. I couldn't find anything wrong with him. Finally, I noticed this HUGE mass on the left side of his neck (see photo above). It was hard and very tender to the touch. We called his doctor in Phoenix who told us to ge him on an antibiotic and come to see him asap. Turns out it's a new lymph node. This could be the body's way of trying to facilitate more lymphatic fluid flow... or a reaction to his MMR shot ... or simply teething. We don't know exactly what has caused it and when and if it will go down in size.

Fortunately, these new learnings haven't come with too much pain.

Medical Update

Crewe grows stronger and more stable every day. As long as he has the trach he will never fully be out of the woods when it comes to risk of infection, but we feel like his most delicate stage has passed. Here's the latest:

1. Speaking Valve. The valve arrived a couple of weeks ago and we work with Crewe daily on it. It's much more difficult than we imagined. It's just not a natural feeling for Crewe to exhale out of his mouth and nose instead of the trach. As a result, he swallows the air and that leads to some serious coughing and burps (Cal thinks the burps are SO funny; he's such a boy!).

2. Milk Allergy. Last weekend we accidently fed Crewe baby food with milk in it. Who knew that the Beechnut brand of Sweet Potatoes and Turkey would contain heavy cream? Yeah, in a food that is labeled for babies 6 months old! The company is going to get an ear full from me. His response was immediate and very scary. Let's just say we are glad he had the trach because we could have easily had a serious airway problem and amubulance ride to the hospital. A visit with two of his doctors and a steriod got the problem under control. It's soy all the way for the near future.

3. Therapy. Crewe has four therapy sessions every week: two speech, one physical, and one occupational. We are really getting see positive results from the weekly sessions. Physical therapy has helped Crewe to sit up straight and better control his neck and breathing. He LOVES the exercise ball.

4. Sclerotherapy. There are no sclerotherapy sessions planned for the near future. The MRI he had in February indicated that most of the cysts have been addressed and the remaining swelling is due to abnormal tissue. We're in a wait and see phase right now.

Always Read the Fine Print

Last month we were ecstatic when we finally secured an insurance policy for Crewe. Upon applying for the policy we were assured that there would be no exclusions because it was a one of these expensive guarantee-issue policies.

The actual policy (think "book" and you'll get the right mental image) arrived in the mail recently. As we read the policy we had some questions and called the friendly customer service number to get some answers.

One of the questions was: "is there a limit to the number of speech therapy visits that are covered?" Long pause. (On the other end) "uh... speech therapy... oh that's not a covered benefit... and neither is occupational therapy." "You can see that on page 89, paragraph W." Of course, it's right there in plain english on page 89. I try to hold back the tears and think "no exclusions, huh?" The CS rep continues "yeah, unless there is a state law mandating that speech therapy be covered, it's excluded from all of our individual policies. Arizona doesn't require that speech be covered."

Argh! The speech therapy Crewe has been receiving the past couple of months has been the most impactful treatment to date, including the sclerotherapy. Hmmm... non-invasive speech therapy at $200 a session or invasive sclerotherapy at $45,000 per session... what's the better deal to the insurance company?

We've explored all of the options we can think of so far to find coverage for his speech therapy and have come up dry. Our last hope is that the insurance company will honor our request to add an addendum to the policy covering speech. They are "reviewing" his case now and we hope to have an answer soon. Darn that fine print. Darn page 89, paragraph W to be exact.

We'll be hearing a lot more...

Laughing, babbling, and crying...from Crewe! Crewe's ENT and pulmonologist recommended him for a speaking valve this week. This valve (shown above) fits on the end of his trach tube and will allow Crewe to still breath in through the trach, but force him to exhale through his mouth. The result is more air passing through the vocal cords. More air means more sounds! It has been ordered and should arrive sometime next week. We can't wait.