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.

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.

Bring on the Baby!

Here's a link to my HemAware blog entry. This was originally posted on 1/26/11. I know I'm looooong overdue for posting an entry on this blog. I'm working on it guys. Just bare with me. I've got a LOT of projects going on. Anyway, enjoy!

http://www.hemaware.org/blogs/diary-hemomom/bring-baby

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.

Believe it or not, I had two jobs—worked 60 hours, seven days a week, to be exact—and attended school two or three nights a week during my pregnancies with Ethan and Niki. I didn’t have to be conscious of Family Medical and Leave Act (FMLA) hours back then, but both times I worked up until the day I gave birth. As a matter of fact, I started having my contractions at work, finished my shift and gave birth to Ethan early the next morning. (Yes, really!)

I remember being tired when I was pregnant with my precious little bleeders, but I don’t recall being as exhausted as I’ve been with this pregnancy. I’m no longer working seven days a week, and my education is on hiatus, but nevertheless my body feels like it’s working the crazy schedule I used to have. I’m still working full time, but now it’s because I have to be ever-conscious of the FMLA hours I use. (Niki and I have to share FMLA hours that I have accrued in a rolling 12-month period.)

So, I roll myself out of bed every morning and go straight to work. And lately, each morning, I’ve felt a twinge of disappointment that I haven’t given birth yet. I’m absolutely sick of working, but I’ve got to do what I’ve got to do to protect my job and my benefits.

An Exhausted Pregnant HemoMommy

Please forgive my pregnancy-induced whining, but quite frankly I hope I’ve already given birth by the time this blog entry is posted. If not, well, I’ll probably be seriously considering using a plunger to get this kid out by then. I’m grouchier, sleepier, weepier, hungrier and more worn-out than I’ve been with any other pregnancy. John has noticed it, too.

I’m a petite person—all skin and bones—so carrying around an entire human being always wreaks havoc on my tiny frame. But, there is also something drastically different about how I’m coping with this pregnancy, too. I’m a HemoMommy now, and although the physical demands of HemoParenting are no different than those of “normal parents,” the mental demands are.

I never got any responses to my blog post looking for other pregnant HemoMommies, so I don’t know if I’m alone in feeling this way. However, it seems my stress level is a bit higher with this pregnancy, and I theorize that it’s because I’m a different kind of parent now.

The fact of the matter is—like most HemoMoms—I’m the primary caregiver when it comes to managing Niki’s bleeding disorder. My medical background has been helpful in my successful management of Niki’s care at home, but these days it feels like I’ve got to command my “pregnancy brain” to remember to order factor and infusion supplies, log infusions and, of course, wake up early enough to adhere to Niki’s prophy schedule. Aside from having the kids to tend to, each passing trimester has made me feel like my HemoMom duties aren’t as second-nature as they once were.

Work vs. HemoDad Dilemmas

John is here to help—if I were to die tomorrow, he would be perfectly capable of doing everything I do—but he also has a very demanding job. A job he has to be diligent about sustaining, not because it’s more important to him than his family or because he’s the “good” insurance provider, but because it supports the financial demands of rearing three, soon to be four, children.

Most of the time I try to be understanding about it, but lately I’ve been a nasty, pregnant ogre when John is faced with “work vs. HemoDad” dilemmas. Do I resent it sometimes? Absolutely. But he has his role, and I have mine. My “parenting specialties” aren’t the same as his.

John has had to report to work during Niki’s hospital stays these past two years of her life. In fact, he went back to work when she was still in the NICU, and I totally understood and supported his decision back then. But during her recent hospital stay before the New Year, was I more annoyed now that it was my nine-months-pregnant self tending to Niki? Definitely. It wasn’t fun tending to a cranky, clingy toddler while lugging a soon-to-be newborn in my belly.

Frankly, as much as I love the excitement of awaiting this baby’s arrival and the feeling of my second daughter squirming around in my tummy, “labor day” can’t come soon enough. I can’t wait for the blood flow to my uterus to be redirected back to my brain. Raising four kids is going to be tough, but I say it’s totally worth it. Big families rock!

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.

"Party" All The Time

I'm back from my semi-hiatus, ya'll! You guys know I'm a stickler for keeping my entries in chronological order so unfortunately -- NO -- this post is NOT about our trip to NHF's Annual Meeting in New Orleans.

In due time my pretties, in due time....

In other news, call me silly, but I only recently discovered the "stats" tab on Blogger a few weeks ago. (When my blog died, and was reborn.) I was surprised to learn that I have quite a few daily visits from readers all over the place -- United Kingdom, Philippines, Germany, Japan, Russia, Canada, Netherlands, Sweden, Czech Republic, and the list goes on and on! Okay, the Philippines makes total sense, but the only logical explanation I have for the other countries is that you found my blog through HemAware.org. And if so, that ROCKS & I'd love to "meet" you.

With that being said -- ahem -- why not just hit the "follow" button in the Bloggy Friends area on my sidebar? I know I just put the "follow" option on my blog (when my blog was reborn -- woo hoo!), but please do follow this blog so I know you're out there. A few of you "secret readers" already came out of the woodwork, but I don't see you under my followers list. Family and friends, this includes you too! Let's get this party started!!! :)

Thank you for listening to my announcement of the day. Onto the update....

Saturday, November 6, 2010

You may remember that I mentioned in my last post that I was battling cold and allergy symptoms shortly after Halloween. I didn't have a cough or asthma symptoms, but I was dealing with watery eyes, a nose that ran like it was trying to win a friggin' marathon, and sneezing like I was allergic life AND air itself.

I. Was. Miserable.

Nevertheless, I continued to work and push myself like I always do -- gotta save my sick/vacation time/FMLA hours for emergencies with Niki -- and I *thought* I was doing better by Saturday morning. I'm very limited on what I medications I can take because of Noie, but my allergist started me on a Prednisone taper on Thursday 11/4/10 so I could keep my asthma in check. I'm breathing for two, ya know. My doctors and I get nervous whenever I'm sick because my history of asthma and anaphylaxis. The good news is all was fine and dandy asthma-wise. My lungs were clear and I had no signs any infection brewing. My doctor even gave me the go-ahead to use Benadryl for my allergies. Meanwhile, I was still reporting to work every day, and comforted myself (and my patients) in knowing that I was NOT contagious.

There is no rest for the weary. ;-)

I was feeling slightly better on Saturday. Actually, we had a wonderful time attending my godson and nephew's joint birthday party. I don't recall appearing alarmingly sick to the rest of the party-goers, but I'm sure I looked like something the cat dragged in. But -- hell -- that's practically a daily occurence anyway! I'm far from being one of those radiant pregnant women. I don't glow, I sweat!

The cubbies had a blast. We got there a little late which means I didn't have a chance to take  pictures of decor while it was still relatively untouched, but it was an adorable party. I really appreciated the concept of theme. I went to a Cowboys & Indians party once, but I really liked the idea of Buzz & Spidey battling. My CIL-to-be put the party together and I must say she did a really good job. (You guys know I'm a sucker for all things crafty!)  Frankly, I'm a lazy ass so I always make the boys pick ONE theme even though they've begged me do TWO themes before. I still haven't got the slightest idea how I could've put together a "Hot Wheels and Diary of a Wimpy Kid" party. But, it's okay because I'm done with boy parties for a while anyway. ;-)

Here are a few pictures from that day. Most were taken by John, but some by me too. Random note: John has taken this photography hobby of mine to a whole other level! He keeps making trips to the camera store to buy contraptions for the Canon! This was the first time that he shot with his precious Gary Fong diffuser, but I really like how much warmer the pictures are. And to think , I had to break my point-and-shoot camera, convince him to upgrade to a step-up camera, and then practically beg him to drop the cash on the T2i once I got sick of the step-up! Now I have to wrestle the damn thing away from him at home because, sometimes, he fiddles with it more than he fiddles with me. ;-)

The Cake

 My Godson JT

 And his brother AC

 These are my favorite

 Red Velvet

 More Yumminess

 Okay, I didn't get approval to post this partial face shot, but I hope you don't mind. I really gotta start asking people while I'm at fam parties to see if it's okay to post pics. I don't like doing it without permission , and I have so many shots that I wish I could post!

 AC is barely 2 yrs old, but he already has a great imagination. :)

 My Cubbies

 The Next Generation of "C-Boys"

Boo's Schnozzle

 Niki hugging the adorable LL

We were pooped when we got home. The boy cubbies practically collapsed when we walked through the door, but Niki was still up and at 'em. She was coasting on a sugar high so I just laid in bed and watched her play with her Daddy. I started to feel weak as I drifted off to sleep, but I just figured I prematurely pushed myself like I always do. I must have only slept for about 45 minutes or so, but then I woke up and it happened again....

I had another anaphylactic reaction.

I've been dealing with this for YEARS now and it's idiopathic -- which basically means the doctors don't know what causes it.  I've had tons of work-up -- octreotide scans, nuclear medicine scans, CTs, xrays, flexible sig, endoscopy, specialty lab draws, multiple 24-hour urine collection tests (yes I know the concept is gross) but multiple specialists haven't been able to figure out what's causing it. But what they do know is it's definitely caused by a delayed reaction to something I eat. I've tried to keep a dietary diary to correlate what it is that I'm allergic to, but nothing adds up. And, unfortunately, my food allergy tests have all come back negative. So, I'm pretty much tiptoe-ing around this anaphylaxis crap.

Eight years of walking on eggshells ain't fun, but I'm just going to keep doing what I do and hope for the best.

I felt an instant overwhelming sense of fear wash over me when the episode happened. I was barely moving air in less than 5 minutes. Luckily I didn't lose consciousness this time, but I was close to it. I vaguely remember feeling dizzy and staring at my SIL holding Niki. Poor Niki looked confused, and I hated that she saw me that way. I hate when the boys see me that way! My rescue inhalers didn't work and John called 9-1-1 immediately. He's seen me almost die from this on multiple occasions -- he's even shot me with my Epi-pen before-- but I shook my head when he frantically offered to administer it to me.

Epinephrine can save a life during an anaphylactic reaction, but its also a vasoconstrictor. Vasoconstrictors are NOT good for the placenta, and the use of Epinephrine has been known to cause fetal death. In laymen's terms, this means that poor little Noie wouldn't have been able to breathe because of the negative effect the Epi-pen could've had on the oxygen-rich blood flowing to my placenta.

Do you remember when I wrote this post? The last time I had a very bad episode and lost consciousness was when I was in my 1st trimester of pregnancy with Niki -- my 26th  birthday. And that's why it was such a miracle that Niki survived that ordeal because the paramedics gave me epinephrine when they arrived! Really, my doctors and the ED were absolutely amazed because I was barely 8 weeks pregnant. She really is a miracle cub, ya'll! So, given that experience, I didn't want to give myself epinephrine at all. I didn't want to put Noie at risk, anaphylaxis or not. I'd rather move very, very, very minimal air than instantly have no air to the baby at all.
I would rather die than lose another cub.

DCFD made it to the house in a matter of minutes. (They're right down the street.) The rest is a blur. I was panicked, and didn't feel like I was sucking in any air. John says my oxygen saturation was 79-80% by the time the firefighters got there!!!! I started having back spasms (similar to what it feels like when I go into labor) so I was sure that something bad was happening to the baby. They took me to the emergency room in SSF and I was given copious amounts of oxygen, several breathing treatments, IV benadryl, and magnesium. I was already on a prednisone taper, and I just took some about 4 hours before the attack.

The ER doctor told me that if I wasn't already on Prednisone, the episode could have been a lot worse. Luckily, I didn't have to be admitted, and I got to go home early that morning. I lost track of time thanks to daylight savings, but I think we were there for at least 6 hours or so. My oxygen saturation was 95% when I was discharged, but I didn't desaturate when I walked/exerted myself. And, that's always a good sign.

Before I left, the nurse checked the baby's heartrate and it was normal. But....I was very worried about Noie. I spent all day in bed on Sunday -- drifting in and out of sleep -- but Noie barely moved when I was awake. Even when I tried to drink apple juice and lay on my left side, she still didn't move. Her movement was sluggish that day and it worried me. I was thisclose to going to labor and delivery so they could do a stress test, but John and I decided to wait it out.

Luckily by Monday morning things were looking good. Noie was moving a little bit more and I had follow up appointments with my allergist. She ran some tests and I practically spent all day at Kaiser because she was searching PubMed (a medical library) for cases like mine so she could formulate a different treatment plan.  Wouldn't you know it, there are none. What happened to me on Saturday shouldn't have happened -- I was on prednisone & numerous inhalers -- but it happened and she couldn't understand why. Wouldn't you know it, she couldn't find any case reports meeting my criteria. She's the Chief of Allergy so I have complete trust that she's doing the best she could to help me. She hestiated to give me clearance to continue on with my trip to New Orleans, but she lived there for 3 years and she knew asthma-wise I wouldn't have to worry about the weather too much. She even recommended which hospital I should go to should I have a reaction while I was out there.

We've formulated a new plan of action for when I think a reaction is coming on. I can't do anything to prevent it from happening, but I'm hoping this new plan will help me from getting so bad so quickly. And, I just had a follow up with my Ob/Gyn earlier today so he could check on Noie, and she's doing fine too. I'm officially 30 weeks pregnant. Only 10 more weeks to go!!!

It's a "party all the time" here in the my neck of the woods, but I'm still cracking my whip and going strong.

Pre-Halloween Happenings...

I got started with my Halloween prep early this year. (You guys know how much I LOVE Halloween!) The boys got such great reviews during their conference that it inspired me to go out and buy their giveaways for their classrooms early this year. I started on October 5th, but I didn't officially finish until 10/28/10 because I'm SUCH a procrastinator. ;-)

Believe it or not, I made FIFTY giveaways for under $30. And, I got good candy too! I found some mini skull and jack-o-lantern pails 6 for $1 at Target's "Dollar Spot." They needed some more details on them so I used a Sharpie to hand-color the jack-o-lanterns and mouths on the skeletons. Then I added sequins (left over from my attempt to make Niki's ruby slippers last year) for the eyes.

Day 1 of giveaway making.

Contents: 1 spider, glow-in-the-dark cobwebs, candies/treats, gummy skeleton, and a human eye ball (bubbles) or a spooky paratrooper.

Jack-O-Lanterns for Boo's Class

Skulls for Kevin's class

I made waaaay cuter tags using my PhotoShop Elements software, but by the time I was ready to print and attach them, my printer ran out of colored ink. :( So, I had to make new tags using crappy ol' MS Paint at work. They don't meet my "craft-crackhead standards", but the kids didn't give a crap about the tags anyway.  Here's the finished product. You likey?

Kevin and Boo were super excited to go to school on Friday, 10/29/10. They had giveaways, class parties, and their Halloween Parade that day! What's not to like, right? The boys were up early and eager to put on their costumes which is totally out of character for them. (I opted to have them change into them at school so they wouldn't mess them up during recess.)  I requested the day off in April so I could serve as a parent volunteer that day. (The school's Halloween festivities are always on the last Friday of the month.) I wanted to make Boo's 1st Halloween as an elementary school student special.

I wish I could be a parent volunteer every day! It was interesting to see Boo in a completely different element. He's a different child at school, and I was very impressed. Boo is a free spirit, but he can stay on task when it's time to crack down and get some work done. My cub makes me so proud.

Volunteering that day also gave me a better perspective on how low the public school system is on resources this year. Budget cuts suck! Class sizes are larger and the teachers have to do EVERYTHING. The boys' school is the best school in the district, too! I felt so bad for Ms. C that I even offered to help compile paperwork from home. I can't volunteer all the time (gotta conserve my time off for emergencies!) but there are still things I could do to help. If you have kids in school, volunteer your time. Our teachers need all the help they can get. Besides, it's good for the kids to see us parents involved in their education. :)

Boo during recess.

Writing in his journal

I took pics like this for all the kids in his class. The classroom camera broke (Ms. C ordered new one) so she was camera-less that day. I wish I could post pictures of all the adorable kids that day.

Clearly Boo is a mobster, but the kids in his class said he was a "Dater" for Halloween.
I love five-year-olds!

John got swamped at work...again. So, he missed out the parade. It sucked, and I wasn't happy about it. Somehow, I managed to split my pregnant self in two so I could be there for both of the boys. They asked me where their Daddy was (I guess I'm not cool enough for them lol!) but they still had a lot of fun at their parade. I did a hell of a lot of sweating running across the school's blacktop area, but the good news is the kids didn't seem to notice that I was sweating like a pig. They really enjoyed posing for pictures. :)

Ms. C as Harry Potter

Boo with his best friend "A"

Isn't he the cutest?!

Goofing off with his friend.

I don't know where he gets this stuff from! Lol!

Jumping for Joy!

My 2nd grader likes to stay in character. ;-)

Walking in the parade...

I don't condone violence!

I really don't know where he got this from?!

Walking back to class...

I made them stop making "hand guns" in their pictures. ;-)

Once everyone got out from school and Niki woke up from her nap, I decided to take the cubs to visit Ethan. I picked up some food so we could picnic and take a few pictures. Unfortunately the grass was wet so the boys decided to eat in the car. Niki LOVES visiting Ethan (and playing with his toys.) She has now completely associated the cemetery with her big brother -- which is both comforting and sad at the same time -- so she excitedly screams "E-Tan!" over and over as we make our way through the cemetery. The minute the car is parked she tries to unhook herself from her carseat so she could get out to see him!

She loves her big brother. :)

My Sevens!

She always touches his face.

My precious baby boy.

Niki absolutely despised her costume ever since it came in the mail. We tried all month long to get her to warm up to the costume and try it on, but she wouldn't budge. When she wasn't crying about its mere presence in the same room as her, she was throwing it on the floor and saying "no." Such a diva! Everyone tried to get her to wear it, but she refused each and every time. Actually, I was thisclose to taking her to the Spirit Halloween on Friday so she could pick out her own costume because I was so desperate!

The good news is my MIL is a miracle worker. She bribed Niki with juice and lollipops. (John and I tried bribery, and it didn't work!) Somehow, my MIL was able to successfully coax Niki into wearing her costume just in time for the boys' "Halloween Happening" carnival at school. The school holds a carnival style fundraiser every year, and my kids have won first place for the past three years. (Yes, really!) I say they should have won this year, but I suppose it was time to pass the torch to someone else. ;-)

Welcome to the "Roaring 20's"

"The Cub Mafia"

I <3 Halloween. :)

Boo & Niki

Kevie

Boo getting ready to play some games.

The Multi-Use Room

Picking out prizes...

Niki on stage w/ my SIL "K" during the Toddler Costume Contest

Picking out her consolation prize...

The Flapper & her Daddy

More games...

More of the mobsters ;-)

The Boys During the K-2nd Grade Costume Contest

More Halloween posts are coming your way! :)