About "Different Dream Parenting" - A Guest Post from Author Jolene Philo

On October 26th, I got a lovely surprise in the mail -- my copy of Jolene Philo's book, "Different Dream Parenting" finally came in!

I had the privilege of speaking with Jolene in August 2010. She was in the early stages of writing and I was one of the many parents that she interviewed to be included in the book. Jolene already wrote a wonderful book titled "A Different Dream for My Child." The book I was being interviewed for was going to compliment that book. It was an honor to get to know such a phenomenal woman and to share our family's story. There was something therapeutic about talking to Jolene. Since then I've been thrilled to see Jolene posting some of the information I've shared with her on her blog. It feels good knowing that my input somehow helped others.  And Jolene, thank you for dubbing me your "Queen of Apps" in your latest post. I think I'll have to put that on my resume. ;) You can click the links below if you want to see those blog entries on differentdream.com.

Seriously? There's an App for That? - Posted September 20, 2010
What the Personal Caregiver iPhone App can Do For You - Posted October 27, 2010
Breast Feeding: There's An App for That, Too. - Posted May 27, 2011

Below you'll find a guest post from Jolene as well as an except from the book. You can purchase the book from her website or you can click here to purchase it at 10% off the retail price. I also have one copy that I want to give away to one of my readers FOR FREE! If you know of family who could benefit from this book, or if YOU can, please feel free to privately message me or comment below. :)

Words from Jolene...

When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families, including Tiffany, and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:

• Asking questions after diagnosis.
• Dealing with insurance companies.
• Preparing a child for a hospital stay.
• Accessing financial resources and government monies.
• Accessing special education services.
• Determining optimum level of care.
• Mobilizing volunteers at home.
• Supporting the sibs.
• Preparing a child for death.
• Planning a funeral.
• Participating in community and church events.
• Creating a special needs trust for adult children with special needs.

In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

• God’s sovereignty
• Parental guilt
• Setting and maintaining spiritual priorities
• Grieving for children living with special needs
• Grieving the death of a child
• Passing faith on to children with special needs

Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit www.DifferentDream.com and click on the “buy the book” tab.

Thanks, Tiffany, for this opportunity to guest blog at The Art of Lion Taming and tell people about Different Dream Parenting.

An Excerpt from the book...  

I Didn’t Sign Up for This, God!

Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.

My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.

More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do, God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?

As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill, mentally or physically impaired, develop- mentally or behaviorally challenged, you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.

You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up to the task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?

The answer is yes, many parents understand your situation. In the United States,
• 10–15 percent of newborns, or 431,000 annually, spend time in neonatal intensive care according to the March of Dimes.
• 12 percent of children between ages 1 and 17 had medical conditions serious enough to require hospitalization between 2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.
• 13.6 percent of students between ages 6 and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.

Lots of kids mean lots of parents, dads and moms who are valuable sources of information and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.

Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.

This book brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tips about where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of them or inability to access them.

Different Dream Parenting contains six sections: Diagnosis, Hospital Life, Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.

Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.

As you read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.

But even with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn you for asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer, I’ll hold you close until your strength and your faith return.

I hope this book helps you break out of your bad dream, wake up, and move forward with joy and confidence. I pray that the stories of parents and professionals in this book will give you hope and strength.

Most of all, I hope you discover the truth God has revealed to me and many other parents. Raising a child with special needs isn’t a bad dream. It’s just a different dream. And surprisingly, a different dream can be the best dream of all.

Taken from Different Dream Parenting, 2011 by Jolene Philo. Used by permission of Discovery House Publishers, Box 3566, Grand Rapids, MI 49501. All rights reserved

It's ALWAYS Sunny in Philadelphia?

This past October, Niki's drug company invited me to share our family's story at a conference they were having in Philadelphia. With John's blessing, I accepted their offer traveled completely alone for the very first time in my entire life. I was nervous, but this was a once-in-a-lifetime opportunity so I couldn't pass it up. (I mean really, when was I ever going to go to Philadelphia again?) My trip was from 10/2-10/4.

Without further ado, here's the story of my trip in photo-essay format. :)

After we attended Church, John and I had a lovely brunch at JoAnn's in South San Francisco before I left Sunday night. My very good friend Kim took me there shortly after Noie was born and it was delicious. 

Here's a pic of my breakfast from that day (The Gaucho.) I realize that my addiction to Instagram-ing EVERYTHING is borderline pathetic, but it's my blog and I'll document what I want, mmkay? ;-P

I took the red-eye to Philly and I tried my best to sleep for as long as possible. My flight arrived at around 6am EST. Novo Nordisk arranged for a driver to pick me up from the airport. The driver met me at baggage claim and he had my last name on a sign! Call me sheltered, but riding in my very own town car has to be one of the coolest things that happened to me this year. The guy had a hat and called me "Miss Intal" and everything! Made me feel like a real grown-up and shit.

Goodbye SF.

Hello Philly!

He was a history buff and had the most badass accent I've ever heard. :)

In case you haven't already noticed, I took pictures of pretty much everything so John could feel like he was there with me. The poor guy tried to get off from work so he could join me, but alas, I had to go alone. Here's some pictures of the hotel and of course, another food shot. That was the best oatmeal I've ever had -- I ordered it twice while I was there!

 

After I scarfed down breakfast, I took a nice long nap. I'm not a morning person (and I was still functioning on West Coast time), but somehow I managed to wake up at with enough energy/time to do some sight-seeing. First up, the was LOVE park. I've seen the "LOVE" statue around before, but I never knew its origin until my sister's friend Kid told me about it. It was close to my hotel so walked over to check it out.  {Note: From this point forward, you'll see Ethan Lion-Lion make cameos in the pictures I took. The boys were sad that I was leaving so I told them that Ethan Lion was going to be their "stunt double" while I was in Philly.  If Ethan Lion was in a picture, then that meant the boys were "there"too. Kev and Boo really got a kick out of seeing the Ethan Lion pics.}

See Ethan Lion?

After Love Park, I took a nice, leisurely walk to the world-famous Mutter Museum. It started to sprinkle as I was walking and I was ill-prepared. I quickly learned that contrary to the popular show's title, it is NOT "always sunny in Philadelphia." ;) Thankfully, I was able to duck under building overhangs to avoid getting wet.

The Mutter Museum let me use my CCSF ID (yes, I'm back in school) so I scored the student discount on admission. As I was adjusting my camera settings, the cashier advised me that pictures weren't allowed inside the museum. (Sorry guys. You can watch a YouTube video here if you want to see what the museum is all about.) There was a lot fascinating stuff in there, but there was some really disturbing stuff, too. There was an exhibit on President Lincoln's autopsy, the preserved liver of world famous Siamese twins, and the most disturbing part, preserved babies in various stages of development. There were also many "deformed" babies in jars as well.

Call me crazy, but I was compelled to pray for those poor babies knowing that their bodies would never be laid to rest. And I did just that...I prayed. Afterwards, I called John crying because I just needed someone to talk to.  I wasn't expecting it, but it was the most disturbing thing I've seen in a long time.

The entrance

The ticket

A window display. Unclear if these things are actually real.

I wanted to go back to the hotel room, but John encouraged me to make the most of my trip. I felt better after I spoke with him so I rode the bus (last time I rode a bus was in high school!) to see all the historical stuff featured in National Treasure. I must say Nicholas Cage made the Liberty Bell and Independence Hall look 20 times cooler than it is in person. (Maybe it's the suspenseful Hollywood background music? Who knows?)

I wasn't very fond of US History in high school so I guess you can say I'm way too ignorant to truly appreciate the symbolism of our nation's history.  Nonetheless, seeing all of these historical artifacts up close and personal was on my bucket list anyway so mission accomplished, I suppose. The 45 minute tour of Independence Hall was 40 minutes too many for my taste. I managed to glaze over all the history-speak just like I did in high school. I snapped my pictures, stepped back, and found myself being more fascinated by the  the furniture and architecture than anything else. {I realize I sound like an unappreciative imbecile right now, but you have to at least give me credit for being honest.}

Cast from the Liberty Bell

Let Freedom Ring

:)

The Path to Independence Hall

George Washington's Chair

The original railing that was here during Ben Franklin's time

Ethan Lion Lion propped on said railing

I still had a few hours before sundown so decided to check out the the Franklin Institute. I took  the PHLASH to get there and discovered that I wouldn't have enough time to see the entire museum before it closed. (Side note about PHLASH, I highly recommend this mode of transportation if you want to sight-see in Philly, but don't have a car -- $2 will take you anywhere.) There was a really cool mummy exhibit there so I was bummed that I didn't make it in time to check it out.

For whatever reason I decided it would be a good idea to walk to the Art History Museum  from the Franklin Institute. Bad idea! Not only was I wearing the wrong shoes for that type of walk (boots) but the area had too many trees for my taste so it reminded me of the type of places where joggers are found raped and murdered. There weren't any rapists or serial killers in sight, but I'm paranoid so I scurried as quickly as possible to the museum. (I should have took the PHLASH.)

I made it to the museum in one piece, but it was closed. (Boo!) No matter, I took my pictures and hopped back on the PHLASH to go back to the hotel. There were two very cute little boys who were racing up the stairs while their mom was taking pictures, and it made me miss my cubbies. It would have been so cool to take pictures of them at the top of the steps from Rocky.

Had a huge FML moment here. I didn't know the PHLASH went to the museum until I walked up and saw it parked in the front! LOL!

The view from the top of the steps.

I really missed the cubbies here.

Afterwards I took the PHLASH back to my hotel. As soon as I got to the hotel it dawned on me that I skipped lunch. I only had about an hour before dark so rather than go back to south Philly to try Gino's or Pat's, I asked to concierge to point me to the closest place with the best cheesesteak. I can't remember the name of the place, but it did NOT disappoint. As delicious as the cheesesteak was, I could barely finish half of that monstrosity. On my way back to the hotel I stopped by Starbucks to unwind from the day's events.

For his own peace of mind I promised John that I wouldn't go out after dark. So, I spent the rest of the evening chatting on the phone with him, doing my Physics homework, and panicking about my speech the following day. Oh, what a glamorous life I lead! 

I woke up the following morning with knots in my stomach. I never spoke in front of a large group before! To say I was terrified is a gross understatement. To make matters worse, I felt myself getting weepy whenever I started to talk about Ethan while I was practicing the night before. I knew I would be mortified if I lost my cool in front of a bunch of strangers.

A picture I took while they were testing everything out on the projector. It was so weird seeing my stuff up there!

Time was on crack that morning because 1 o'clock was there before I knew it. I was on the brink of hyperventilating when I saw how large the ballroom was. The good news is the coordinators set me at ease right before my speech. It helped that I broke my speech up with a video of Niki's infusion and sharing some family photos. While I was presenting, I looked up at the crowd and I saw a quite few people dabbing tears from their eyes. I *almost* started to cry too, but by some miracle that I maintained my composure despite having to talk about some seriously depressing stuff. It was humbling to know that these complete strangers were touched by our story. I even managed to survive the question and answer portion. At the end of my presentation, I got to meet quite of the few faces behind the drug responsible for saving Niki's life. It was an awesome experience!

I had an hour to spare before I was supposed to fly out, but I called the driver to come pick me up a bit early. I had a great time traveling by myself, but I couldn't wait to go back home to my den. There's no place like home.

Support Please!

We are celebrating World Hemophilia Day one day early. Tomorrow morning my team, Lucky Factor Seven, is walking in memory of Ethan & in support of Niki. Please consider donating today. We're fundraising to raise awareness for the bleeding disorders community.

Believe it or not, $7 to raise awareness for Factor VII Deficiency will go a long way!

Here's the link to my
team page:
http://my.e2rm.com/TeamPage.aspx?langPref=?EventID=62450&LangPref=en-CA&TeamID=203917

Thank you for your support!

Holidays in the Hospital

Annnnd here's another HemAware post for your viewing pleasure. This one was published on 2/2/11. ;)

http://www.hemaware.org/blogs/diary-hemomom/holidays-hospital

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Keeping up with the demands of the holiday season was a tad more arduous than usual this year, since I was due to give birth very, very soon. Not only did my computer crash, but I was left with very little time to write in between juggling holiday engagements, demands at work (yes, I was still working full-time pre-baby), and, of course, tending to the kids.

For almost the entire month of December, all three kids took turns being sick. In addition to a minor inhibitor scare just before Christmas, Niki also ended 2010 with a bang. She developed a high fever—104 degrees, to be exact—and we had to rush her to the emergency room to make sure her port wasn’t infected.

Come to think of it, the past two holiday seasons have been plagued by trips to the emergency room to rule out an infection in her central venous access device (CVAD). A CVAD is a tube that is inserted into a central vein with an external access device that we inject her factor into. Niki had a Broviac® catheter installed when she was 5 days old so we could perform her infusions and lab draws at home. If the CVAD isn’t kept completely sterile, bacteria from the device can get into the bloodstream, causing a central line infection, but the benefits of prophylaxis outweighed the risks of having a CVAD.

Central Line Infections

In case you didn’t know, central line infections are no good. They can be life-threatening if they aren’t caught in time. A fever could be the first sign that something is amiss for patients with CVADs. This means patients with CVADs, such as ports or catheters, can’t take fever reducers for typical cold or flu symptoms. It could dangerously mask a high fever. For Niki, a temperature of 101.5 degrees or above warrants a trip to the emergency room to rule out a line infection.

All was fine and dandy with Niki’s Broviac catheter until she was 8 months old in October 2009. It seemed she caught every cold and flu bug imaginable because she developed a fever all the time. There was a time that John and I would rush Niki to the emergency room at least once a month! We would take her in for blood cultures, and then she would receive a two-day course of intravenous antibiotics.

At first, I was terrified that Niki would have a central line infection with each and every trip to the emergency room. As time progressed and the frequency of our visits increased, the emergency room became part of our monthly “thing.” Order infusion supplies? Check. Call the pharmacy for more factor? Check. Go to the emergency room because Niki has a fever again? Check. John and I often had Niki’s baby bag packed and ready to go with clothing, diapers, her protocol card and our “mobile hemophilia treatment center.”

I got used to Niki’s high fevers being a false alarm, but John and I had a serious reality check this past June when Niki’s Broviac catheter actually did become infected. She was hospitalized for a week, and her hematologist decided to switch to a port immediately thereafter. Ports provide the same direct access to the vein, but the device is housed completely under the skin. Niki had port surgery in July 2010.

In Love With the Port

The idea of poking Niki took some getting used to, but we eventually fell in love with the port. Despite still being prone to catching common colds, Niki was miraculously able to get sick without crossing her fever threshold. I don’t know if there is any real data to support this, but it seemed she was less prone to getting full-blown sick with her port. Suddenly, we went from monthly emergency room trips to no emergency room visits for six months. Life seemed somewhat normal again.

Thankfully, this last emergency room visit was not a central line infection. She was discharged the afternoon of New Year’s Eve, and we got to ring in the new year at home. Even though she was hospitalized for the last two days of 2010, I’m looking forward to another year of less-frequent emergency room visits in 2011. Switching to a port was the best decision we ever made.

Let's Talk About The Birds & The Bees

I finally did it, I submitted the sex & bleeding disorders blog post that I drafted long ago! I had to tone it down quite a bit -- if you know me IRL that you guys know how much more I could have explored this topic in detail -- but I'm very happy with how the post turned out. I edited it quite a bit before I submitted -- and omitted a lot of the "super taboo" content -- but I still felt like my orginal submission sounded a bit...strained. I had to choose my words wisely because I didn't want to make the post too offensive or taboo. Thank goodness for awesome editors. I'm happy to report that I haven't got any negative feedback from this post. ;-)

Anyhoo, here it is. Enjoy!

http://hemaware.org/blogs/diary-hemomom/let%E2%80%99s-talk-about-birds-and-bees

Last spring I received my sex educator certification from San Francisco Sex Information (SFSI), a nonprofit organization that provides free, confidential, nonjudgmental sex information. SFSI is the only organization of its kind and answers questions from all around the world via switchboard and e-mail.

The organization provides invaluable information and appropriate referrals to people who may be too embarrassed to ask healthcare professionals or cannot locate legitimate information on the almighty Internet. SFSI’s training program covers reproduction, birth control, safer sex practices, HIV, STDs, gender identity and sexual identity. I am proud to be a SFSI-trained sex educator.

For a lot of people, the subject of sex is taboo. I understand why, but I believe our society should make a greater effort to provide comprehensive, nonjudgmental sex information to those who want it. Sure, the public schools provide some sex education, but what we learn about sex, intimacy and relationships also comes from home. More often than not, we come from a home environment that inhibits discussing sex and intimacy. (Well, at least I did.)

I’m not saying all parents should feel obligated to educate their children about sex, but at the very least they should have the resources to direct them to good information, should questions come up.

Sex and Bleeding Disorders

When I was in SFSI’s program, the training staff conducted a session on sex and disability. There was no mention of bleeding disorders, but it got me thinking about how I would probably have to modify my “birds and bees” talk with Niki. If and when Niki decides she wants to talk with me about sex, I want to be prepared. John thought I was nuts—he’s still hoping both of our daughters will become nuns—but I started researching information on sex and bleeding disorders while I was a trainee.

Unfortunately, I quickly learned there is very little information available about sex and bleeding disorders. I was surprised that there was hardly any condition-specific information on sexual issues related to women with bleeding disorders. And, I was even more disappointed to find absolutely no information on sexual intimacy for gay, lesbian and transgendered members of our community!

As a sex educator and member of the bleeding disorders community, I was concerned. As a mother, I was concerned! Not about Niki’s sex life—which, let’s face it, is many, many years away—but it made me wonder how members of our community learned about how their bleeding disorder affects their sexual relationships. Relationships, communication and sexual intimacy are already difficult in a “normal” situation. I imagine that throwing a bleeding disorder into the mix only exacerbates potential issues that could come up. Did they have to learn things the hard way?

Sex Info Should Come From Reputable Sources

Knowledge is power, and I didn’t have that when I was growing up. Everything I learned about sex came from school, peers and, unfortunately, teenage naiveté and experimentation. (It’s a darn good thing that John ended up being a good guy!) I don’t want Niki—or any of my children, for that matter—to be like I was. These days, everyone goes to Google for information, but there is so much sex information on the Internet that is inaccurate or serving some sort of agenda!

It is especially important to me that Niki be as informed as possible about how her condition can affect her sexual intimacy. As awesome as her female hematologist is, I don’t know if Niki will feel comfortable asking her about “embarrassing sex stuff” when that time comes. I’m equipped with enough knowledge to talk with Niki about dealing with menorrhagia when she has her period, but there are so many other things I want her to be prepared for. I read about one woman’s account of the excessive bleeding that occurred on her wedding night. And I hadn’t even thought about that type of bleeding being an issue!

I was pleased to learn that this year’s Annual Meeting was having a session on women with bleeding disorders and intimacy. At that session I heard for the first time that bleeding can be an issue even after first intercourse. If I could split myself in two, I would have attended the men’s intimacy session, too. I’m sure there was a lot I could have learned there as well.

The lack of sex information available to both male and female members of our community worries me. The little information that I have seen seems to be geared toward the mainstream idea that everyone is heterosexual or married. I wish I knew why so little information is available on sex and bleeding disorders. Maybe people are too embarrassed to ask for it. Or perhaps they are asking their doctors about it, but no one has made a collaborative effort to put this information out there for mass consumption.

Medical students don’t receive a great deal of formal instruction on human sexuality unless they specialize in it. So, we cannot rely solely on health professionals to educate our community, either.

I hope I’m not the only HemoParent who feels this way. The fact is, it’s up to our community to realize this issue is important enough to discuss.

Victory for Women at the Annual Meeting

My HemAware post for 11/23/10. :) They posted this a day early because of the Thanksgiving Holiday.

http://hemaware.org/blogs/diary-hemomom/victory-women-annual-meeting


Please excuse my blog hiatus. I was preoccupied with attending the National Hemophilia Foundation’s (NHF’s)Annual Meeting in New Orleans, November 11–13, so I fell a bit behind with my writing. There is so much I want to write about, but it’s difficult to condense the entire experience into a single post! As a matter of fact, it may take a few posts for me to write everything I want to about our experience at this year’s Annual Meeting because, yes, I was that inspired!

We were quite fortunate that last year's meeting (the first year we attended) was on our very own stomping grounds in San Francisco, so we knew where to find cheap parking and good eats. Although I was very excited about going to NOLA, venturing into a different city made me a bit nervous, too. I don’t travel often—my last trip on an airplane was in 2005—so flying makes me nervous. John thinks my fear of flying is silly, considering that I went skydiving earlier this year, but I can’t help it. I've never flown with a toddler or in my third trimester of pregnancy, either, so that only added to my apprehension. And need I mention the potential airport security fiascos associated with all the “medical contraband” Niki and I had to bring on our trip? To say I was nervous about our trek to this year’s Annual Meeting is an understatement!


The good news is that passing through airport security was surprisingly easy, even though I had an entire carry-on bag designated as a “mobile hematology and asthma/allergy care unit.” Even though I technically flew against medical advice from my ob-gyn—I’ll save that story for another post—flying while pregnant wasn’t so bad, either. And as for Niki? Well, let's just say her “adorable little girl” card got revoked a few times on the flights there and back. She wailed like a banshee when altitude changes made her ears pop, but hey, at least she didn’t get any nosebleeds! (I try and count my blessings where I can.)

Traveling to New Orleans

John and I aren’t rich, so this trip wouldn’t have been possible without financial support from Niki’s drug company. The company that manufactures the only medication we can use to manage Niki’s factor VII deficiency has a wonderful medical expense reimbursement program. (I’m so grateful that my HemoMommy friend shared this information with me last year!) The bleeding disorders community is scattered about here in the Bay Area, so our family tends to feel a bit isolated in our neck of the woods. Our local chapter has periodic get-togethers, but we can’t always make it. So, I mainly keep in touch with our extended bleeding disorders family via social networking sites and e-mail. Attending NHF’s Annual Meeting is one of the few times we don’t feel so alone.

We flew in a day early so we could settle in and adjust to the two-hour time difference. (Two hours may not seem like a big deal, but it is when you’ve got a toddler who is on a very strict nap schedule.) For obvious reasons, I didn’t experience the urge to go sightseeing last year. This year’s meeting was a tad more challenging because we had to balance work and play. I’m a planner by nature, which meant that having a trip itinerary in the Big Easy was an absolute must. There is a lot to see and do in the City of New Orleans, but NHF’s Annual Meeting provided a lot of sessions I wanted to see, too!

Prior to our trip, I scoured the session descriptions in the conference registration booklet. I was particularly interested in any and all sessions related to women with bleeding disorders (WWBD). We’re raising a WWBD, so John and I put priority on attending those sessions.

Women’s Bleeding Disorders Going Undiagnosed

My own mother experienced easy bruising and heavy menstruation that she thought was normal. It wasn’t until aftermy son Ethan was diagnosed that we discovered I’m a carrier of the FVII deficiency gene. We later discovered that I was a carrier because my mother had undiagnosed moderate/mild factor VII deficiency. Even after a lab test confirmed this a few years ago, she has yet to receive the direction she deserves, because her primary care doctor doesn’t understand the condition.

My mom has already gone through menopause, but I still think it’s very important that she at least be linked up with a hematologist who could make her more aware of potential risks associated with her FVII deficiency. She had a stent put in earlier this year, and when I alerted the surgeon about her FVII status, he didn’t seem too concerned. (Why do women with bleeding disorders seem to get swept under the rug by health professionals?) I’m not a WWBD, but I feel confident that our girl bleeders will finally get the representation they deserve with NHF’s newVictory for Women initiative. I felt a sense of empowerment the more I learned about the campaign.

The Annual Meeting’s reception for women with bleeding disorders was wonderful. We met in a room filled with strong women, delicious food and decadent sweets. What’s not to like, right? I made a lot of new friends last year, and this year was no different. John and I thoroughly enjoyed catching up with our extended factor family, other “lucky sevens” like Niki. It’s always amazing to watch Niki instantly reconnect with people she met when she was just 9 months old. Oh, but the highlights don’t stop there! After weeks of looking at pictures on the Internet, I finally got to see the Dana Maxx dress up close and personal. It is gorgeous!

And, I’m a little embarrassed to admit this, but I even felt a little giddy when I discovered that acclaimed photographer Patrick McMullan took a picture of Niki and John. The McMullan family’s story hits close to home on so many levels that I cried when I read “Iron Butterfly,” the HemAware Winter cover article about Connie McMullan and her daughter, Doreen, who died in 1979 from complications of a gastrointestinal bleed as a result of von Willebrand disease. Niki was the youngest WWBD in that room, and that made me feel quite proud.

I can’t wait to see what the future has in store for my daughter and all the women this campaign will reach. In the meantime, I’ve already started to teach Niki how to make a “V” for victory.

Different Dream...

If you haven't already done so, I highly recommend following Jolene Philo's blog at differentdream.com. (Her site is listed under my "Good Things" tab.) Jolene is a wealth of knowledge when it comes to raising a child with special needs. In my old blog (yes, I'm still dwelling on it guys) I wrote about how Jolene interviewed me about Ethan & Niki's story for her upcoming book. Since then she has graciously written two blog entries about that interview. And, I'm honored.

Here is a link to the most recent post:

http://www.differentdream.com/2010/10/personal-caregiver-iphone-app/

If you are a parent raising a child with special needs and have tips or suggestions that you would like to share, please feel free to comment on the post. We could all use some help from time to time. ;-)

Also, here is the link to the original post she wrote shortly after our interview.


http://www.differentdream.com/2010/09/seriously-theres-an-app-for-that/

Lastly, click on the link if want to purchase A Different Dream for My Child. I'll be sure to let you all know when the book (the one I interviewed for) is released.

Today's Highlights...

I got off from work at 2:30 today to take Niki to her routine check up with Dr. Awesome. We try and alternate visits between clinics in Oakland and SF, and today's appointment just so happened to be in SF. I was hoping to make it there a little early -- and I was making good time too -- but I got caught in some pretty gnarly traffic. In case you don't already know or you live under a rock, Game 1 of the WORLD SERIES is today!

Lovely, isn't it?

The last time the Giants made it to the World Series was when I was pregnant with Kevie in 2002. The Giants had a damn fine team that year!!!! That was the year I fell in love with J.T. Snow (even more after the Darren Baker incident at home plate), Barry Bonds was is the Homerun King, and Dusty Baker was the best goddamn manager there every was! When they lost, I remember dwelling on the fact I couldn't tell Kevin (when he got older) that the Giants won the World Series when I was pregnant with him. How cool would that story have been?!

Where for art thou, J.T. Snow?

Now here we are -- 8 years later -- and Kevie & Boo have Giants fever! The whole dang Bay Area has caught Giants fever!  Most of the staff at Dr. Awesome's clinic in SF wore Giants gear and they had posters all throughout the clinic showing support for the Gigantes.  And tomorrow, in lieu of uniforms, Kev & Boo's school is allowing all of the kids to wear Giants gear to celebrate.

I lost touch with baseball when I became a Mommy, but you guys probably remember me writing about my love affair with baseball on my old blog. Hell, I had no idea what "Fear the Beard" meant until two weeks ago! Now, I'm struggling to write while my boys (John, Kev, & Boo) excitedly clap and yell things like "Gooo Posey, gooo!" or "Uuuuurribe!" or "5-2 baby, 5-2!" or my personal favorite "Yeah, Diirrrrrty Sanchez!" to the television. Ah, father-son bonding at its finest. ;-) 

I still love J.T. Snow, but Buster Posey is a very close 2nd in my guys-I-think-are-cute-book. 

 And yes, I'm know I'm somewhat of a cougar for feeling this way.

I'm not a bandwagon fan -- frankly I'm opting to write rather than truly watch the game -- but I'm still hoping the Giants kick some Texas Ranger ass tonight. Maybe I can tell Noie the Giants won the World Series when I was pregnant with her.

But I digress...

All went well at Niki's appointment with Dr. Awesome. As usual, Dr. Awesome was THE BEST. Niki lost some weight with the MRSA incident (and now I miss my old blog because I would've linked the original MRSA post), but she's otherwise doing okay. Niki's been bruising easier and she has a nasty hematoma on her tongue, so Dr. Awesome increased her NovoSeven dose from 200mcg to 220mcg. To give you non-medical folk and idea of how much factor that is, it's about the same volume as a single tear drop! And to think -- her factor costs thousands of dollars for one dose! She has a 1ml vial it goes bad about three hours after it's reconstituted. All the "tear drops" left in the vial go to waste.

Nurse Rich got Niki a 2-month supply of hard-to-get Griper needles, and a note allowing her to fly to New Orleans with her factor and infusion supplies. Dr. Awesome brought it with her to the clinic in San Francisco. I called Niki's social worker one month ago about the letter, but she must have forgot to write it for me before she went on vacation. I know I've said this before, but Nurse Richard is the BOMB!  I honestly don't know where we would be if Dr. Awesome and Nurse Rich weren't so wonderful with Niki.

With that being said, John and I finally spilled the beans.

We let Dr. Awesome know that we were naming the baby after her. I was scared that she would be weirded out by it, but you know what she did? She started to tear. And I started to tear! And we hugged. :) And THAT is why John and I love her so much. Even though we don't go to a HTC, we know that our "medical family" genuinely cares about Niki. We're going to Oakland for our next visit so Niki can see Nurse Rich. 

I also mentioned to Dr. Awesome that Niki's case is probably going to be included in a "letter to the editor" for a medical journal. I don't want to go into details until it actually happens, but Niki is the first case that this factor VII deficiency expert knows of where NovoSeven was used as primary prophylactic treatment. Dr. Awesome is doing some awesome things with our little guinea pig!

So, Dr. Awesome is totally worth naming one of our children after. :)

Totally random note: I LOVE the way Tony Bennett sang "God Bless America." So SF!

Now & Then...

Here are two videos that John and I took to share with family and friends. Watch this if you've ever wondered how we did/do Niki's infusions every other day. She had her Broviac catheter (she had surgery to install it when she was 3 days old) removed in July and we've been infusing via port ever since. If you have questions feel free to leave them in the comments section or shoot me an e-mail. I'd be more than happy to answer them -- knowledge is power! :)

October 2010: Now (Infusion via Port)

April 2010: Then (Infusion via Broviac)

(Don't mind the song. There are slim pickins' on audio swap when videos are this length.)

HemAware Wednesday - My Boys

Here is the link to my latest post at HemAware.org 
http://hemaware.org/blogs/diary-hemomom/my-boys

And...I just saw a very sweet comment left by my fave sweet treat-maker "M" from Tiny Treats. If you're a Bay Area local and need some delish teeny, tiny morsels of yumminess for your party, you should definitely check her out. I used her services for Niki's 1st birthday party and our guests gobbled up everything. :)

***10/28/10 Update***
Here is the condensed version of the results of our first parent teacher conferences.
Kevin

Aside from the minor mystery ailment issue I wrote about in my HemAware blog, Kevin's conference went splendidly.

Kevie is ahead of his class. At the END of the school year, most kids can read approximately 51 words per minute. Well my friends, Kevie can read 110 words per minute! Keep in mind that Kev is only 7 years old! The KID is already reading chapter books, and I brought him his first Goosebumps book a few weeks ago. He's still a video game fanatic, but the boy enjoys a good book! Like mother, like son. Kev is the top of his class for reading comprehension, and he is able to derive mature ideas and values from stories. Ms. H was very impressed with his essay on "Tabby and Mr. Putter."  She really gets a kick out of his quirkly little perspective on life, and his passion for paper crafting. Kevie finishes his work early so he can focus on his comic books and paper creatures. Again, like mother, like son.
We (me, John, and Kev's teacher Ms. H) are excited to see how well Kevin performs when STAR testing happens later this year. Unfortunately, the school doesn't have a GATE program any longer, but his teacher has no doubt in her mind that Kevin would have qualified for GATE if the program was still around. Kev has accelerated in all subjects -- language arts, math, and of course, reading. His teacher thinks he's just the swellest little guy ever.
But...don't be fooled because he's still his Daddy's son! Kevin is the sweetest little thing in class, but apparently he has a penchant for using the F-word on the playground. He doesn't say the F-word to people, but he does use it to express his emotions. His teacher wasn't too worried about it, but she wanted us to remind him that adult words are best left for the adults.

Anthony

John and I were worried that Boo's speech and temper issues would resurface once he started school, but Ms. C says that it isn't an issue at all. The psychologist that evaluated him when we were going through his speech evaluation said that Boo would eventually outgrow his mild OCD. (He had an affinity for perfection and would have a tantrum when it wasn't.) It looks like the psychologist was right because Ms. C says Boo doesn't exhibit any issues at all! Boo is one of the brightest and sweetest kids in class. Ms. C says that she wouldn't have even have known that he had severe expressive speech delay if she didn't already known about his history. (We're old friends from high school and she was Kev's kinder teacher.)  Boo does the cutest things at school. He always reminds Ms. C that she and I were friends in high school. :)

Boo has already met the year end standard for number and letter recognition!! He is very social (more social than Kevin was in Kinder) and has tons of friends. He doesn't "verbally clam up" when he's in stressful situations like he does at home. (I think he just wants to be babied more by us.) He needs a little more TLC when he's injured (see the HemAware post above if you want to read more) but he has no other issues. I feel so relieved. I'm happy that his speech therapy helped and gave him the best start possible. It was worth all of the time off, paperwork, evaluations, and appointments we had to go through. He's just a normal kid now, and that's all we ever wanted. :)

Wigging Out...

Thursday, 9/30/10 was a day for wigging out here at the lion's den. Niki had a follow-up appointment for her mouther-effing problems, and we forced Kevin to overcome his fears...at Target.

My day of wigging out started when I got off from work. Niki had an appointment at UCSF's Dental Center at 4pm because her lovely little fangs needed a check-up. John was supposed to accompany me to the appointment, but he had an emergency at work. So, I had take Niki on my own...well, sort of. My 10-year-old SIL "A" came with me to the appointment. In case you missed it, I'm pregnant. And UCSF has crappy parking. And the garage is far from the Dental Center! I needed all the help I could get.

I got off from work a hour early, and I barely made it to the appointment on time. "A" may be 10-years-old, but she was a huge help. She helped me entertain Niki, and carry her heavy-ass baby bag. Aside from extra clothes, diapers, wipes, toys, drinks, and snacks, Niki's baby bag is also a mobile "hemophilia treatment center!"  We carry all sorts of medical supplies in that thing so it's heavier than Niki!

 Niki's torture chamber exam room...

The appointment itself was going fine and dandy until it was time for the actual exam started. Niki's dentist was very sweet, and she tried her hardest to make the whole experience pleasant for my little lioness. Alas, Niki-Boom wasn't having it and cried the minute the dentist started probing her teeth. Babygirl was WIGGING OUT!!! The exam was performed "knee-to-knee" so Niki was straddling my huge belly. I had to hold her hands down as she was kicking, screaming, twisting her head out of the dentist's grasp, and crying! "A" tried to help hold Niki's arm down whenever I had to move Niki's feet away from my belly. The whole experience was a nightmare.

Boy, was I sweating! That was definitely a time that I could have used John's help. Needless to say, my annoyance with John's absence skyrocketed during Niki's 20-30 minute cry session. She's a strong little girl!

The good news is Niki's very first "semi-cavity" has resolved. The minerals in the fluoride treatment they gave her in March halted the decay. Actually, her tooth enamel is stronger in the area now. The bad news is Niki has the start of a new semi-cavity on one of her upper-back molars. She doesn't sleep with a bottle or eat sweets very often --and we brush her teeth religiously-- so it looks like Niki has definitely been cursed with her father's weak tooth enamel. Her dentist gave her another fluoride treatment and asked that we bring her back every 3 months for a check up. If the fluoride doesn't work she may need to get admitted in the hospital for dental work shortly after she turns two years old!!

In case you didn't know, dental health is HUGE in the bleeding disorders community.

If and when Niki needs to have dental work, it would be a huge deal! She would need to be put to sleep (general anesthesia), have her factor titrated up and then down, AND also have prophylactic antibiotics administered prior to her procedure because of her port. Ugh. And don't even get me started on all the mounds of paperwork and insurance approvals I'll have to get in order for the procedure to be done! Basically it would be a pain in the ass (not to mention somewhat risky) so our best defense is to PREVENT any mouther-effing problems from occuring.

It was right then and there that I decided to eliminate all sippy cups and bottles from existence in our household. Her doctor agreed it would be a good idea since prolonged drinking from sippy cups (no matter what the fluid is) can also contribute to enamel softening and weakness. With that being said, I am happy to report that Niki has been officially weaned of sippy cubs and bottles as of yesterday.

Actually, it took less time than a week!  Her last bottle & sippy cup usage was on Wednesday, October 6th!!

Niki only drinks from cups now. (BTW - straws are no good either according to her dentist.) Niki's gross-motor coordination isn't 100% up to par -- which means more laundry and t-shirt changes now -- but I'm glad that she's done with this portion of her babyhood. Now, all I have to do is hope that her follow-up appointment in December will show that this round of fluoride helped halt any further damage to her back molar. I even got Niki a pretty new Hello Kitty electronic toothbrush to celebrate. She's an independent little thing and likes to try and brush her own teeth. :)

Niki picking out a toy with her dentist...

Random note: I think it's interesting that ALL of Niki's doctors have been beautiful, intelligent, minority women. Her last two dentists, Dr. Sweetheart, and Dr. Awesome are all strong female role models. Hoping this means I'm raising my very own strong, beautiful, future health professional. :)

Niki is a sweaty little girl when she cries. Her hair was soaked after the visit. She thoroughly enjoyed the cool breeze blowing threw her hair when we got outside.

Later on that night, John and I took the kids to dinner at our favorite Japanese restaurant, Akagi. The boys LOVE their "pop stickers" and teriyaki chicken. I'm not kidding -- they ask to eat at that place. Anyway, after dinner we decided to head over the Target to see what Halloween costumes they had. Now, Kevin normally loves taking trips to Target, but he kept trying to convince us to go home. 

This is the second Halloween season that this has happened. Something clicked inside of him and he's been afraid of Halloween displays since last year! He freaked out off of a Pepsi display at Lucky's last year. I shit you not.

I forgot to write about it, but a few weeks ago Kevin completely wigged out at Michael's. I forgot that the Halloween section was up, and he had an all-out Mad TV "Stuart" moment right there in the middle of the aisle. 

Skip to 2:43 & 4:44 if you want to see what I'm talking about...

Keep in mind that we had to pass through that way in order to get to the section I was trying to get to. And also keep in mind that I was alone, carrying Niki (John took the car that had her stroller in it), and Boo was there too! Boo and Niki were completely unfazed by the Halloween section, but Kevin refused to walk that way. There was no way in HELL I was going to walk alllllll the way around the store with Niki, her baby bag, and Boo hanging onto my pocket just so Kevin could avoid a completely harmless Halloween display.

Now remember, we weren't at the Spirit Halloween Store, we were at Michaels! The display wasn't moving and it wasn't even that scary! So what did I do? Despite his protests, I firmly held onto Kevin's forearm and quickly dragged him past the Halloween display. With Niki, the baby bag/mobile hematology unit, and Boo still hanging onto my pocket!

And, I'm sure we were quite the sight to see for all the old grannies shopping for supplies!

Kevin was dragging his feet and pulling his entire body weight back in a Stuart-esque "I don't wanna!" fashion, and I wanted to shoot myself in the head. I. Was. Sweating! After we passed the "sheer horror" of the Michael's Halloween display, Kevin quickly recuperated and asked me to buy him a foam airplane toy. After that display of behavior?! I think not. I scolded Kevin for being so unreasonable, promptly grabbed my items, paid, and left the store.

Flash forward to our Target trip planning at Akagi...

I reminded John about Kevin's behavior at Michael's a few weeks earlier, and we knew that Kevin  needed to address his fears head on. So, John and I sternly advised Kevin that he was going to Target whether he wanted to or not. Sometimes, you gotta resort to tough love to teach a KID a lesson!

We're not entirely mean parents. Kevin is a very intelligent and reasonable child. He's a very mature seven-year-old so we have the ability to have two-way discussions with that KID. On the car ride there, we kept reassuring Kevin that we were going to Target -- not a haunted house, not a Halloween store -- to Target! And, there is nothing to fear at Target. We also reminded him that the "real dead people" are at the cemetery. Kev agreed that he wasn't afraid of the cemetery so we told him that he shouldn't be afraid of fake tombstones (or anything else for that matter) at Target!

I also told him a story about how my brother D used to scare all-holy-hell out of me when I was his age. (I'll write about that some other time.) No one has ever scared Kevin  so I don't know why he suddenly developed such irrational fears! I asked him what he planned on doing when it was time to trick-or-treat? Was he going to be scared or "be a lion?" I reminded also reminded my son that I was the "scardiest person" in the entire world, and I would never take him anywhere that I was afraid of. Aside from that, John and I reassured Kevin that as his parents, we would NEVER do anything to hurt/scare him.

We made it to Target and Kevin didn't protest when it was time to get out of the car.

Kevin nervously shifted his eyes side-to-side as we navigated our way through Target. They're expanding the Target near our house so everything has changed. It's not as familiar as it once was. When finally came upon the Halloween section at Target, Kevin stood dead in his tracks. Boo happily chimed in, "C'mon, that's not scary!" and boldly walked up to the closest skull he could find.

(Boo is hardcore like that.)

Kevin slowly started to evoke his "inner Stuart", and John wasn't having it. Neither was I. I hit the scariest fake zombie I could find and announced to Kevin that a "real zombie" wouldn't let me hit him in the face. "He would be eating me right now if he were real!" John started squeezing the mummy closest to him and repeated, "It's not real, Kev. Stop trippin." Even Boo joined in. He picked up a skull, knocked it on the side of its head and said, "Kev, why you scared? It's just plastic!"

Clearly my poor boy was outnumbered as he stood there trembling outside the parameter of the Halloween section. However, he could also see the horror surrounding us, and the fact that nothing was lunging out to "get" his family. I told Boo to hush up as Kevin slowly, but surely, inched inside of the parameter to get closer to a not-so-scary pumpkin. I'm sure there was no way Kev was going to let his younger brother be braver than him!

After smacking a few more faux-ghoulish things, I grew impatient and brought Kev right next to the zombie I first smacked. I felt his body tense up. I squeezed the latex and made him feel it, reminding him that it felt like his Hulk Smash Hands. John continued to reassure Kevin that everything was fake as he handled a somewhat-creepy severed hand a moving in jar. Little by little, Kevin started touching things. His body slowly started to relax as he explored some of the more spooky Halloween decor. The science geek inside of him commented on "how real" the skeleton looked. I must admit a lot of that stuff was pretty unnerving, but Kev did really good.

We spent a good 20 minutes in that Halloween section. And in that 20 minutes, Kevin finally got over his fear of "all things Halloween."  We're still working on getting him to watch scary movies (even I can't do that), but I don't think I'll ever have to worry about Kevin being terrified of a "scary Pepsi display" ever again. Maybe we handled this whole situation wrong, but it worked and that's all that matters. Parenting is all about trying your best, and hoping for the best outcome to take place. And in this case, I think John and I did pretty damn good for some young rookies.

Boo is wearing the gold mask and Kevin is wearing the red one.

 FEAR BE GONE!!!

I'm happy to report that John tested Kevin a few days ago. He took the boys to Target to buy them a toy for doing so good at school. Kevin hesitated a little bit as they got closer to the Halloween section, but quickly shrugged his residual fear off. And Kev didn't even bat an eye when I took him to the Party Warehouse yesterday. Looks like our young cub just got a little tamer!

Now, if we could just do something about that mane. ;-)

This KID is good sport.