fightingfelix

[fightingfelix]

Birthday Donations (from Heather)

Dear Friends and Family,

I’m writing, once again, to ask for a donation for something related to improving care for  Congenital Heart Defects (CHD). This year, for Elliot and my birthdays, we are asking for financial support of The Oshman Family Endowment at Dell Children’s Hospital.

Click here to support the Dell Children’s Oshman Family Endowment

Please be sure to choose “The Oshman Family Endowment” from the list.

Dell Children’s is the local children’s hospital here in Austin, Texas. The hospital has changed its focus a bit to include upgrading the heart program. World renowned surgeon, Dr. Fraser, has joined on and is guiding major changes at the hospital. He previously helped build the number one Pediatric Heart Center in the country, Texas Children’s Hospital in Houston, TX.

I volunteer at Dell Children’s in the Heart Center almost every week and the changes are significant. They are retraining the current team and bringing on experienced nurses, doctors, and staff. Rooms are being remodeled to be tailored for heart patients and equipment is being upgraded. The vision for Dell’s Heart Center has also expanded to include heart transplant services in the near future so they will be able to cover the full gambit of pediatric heart issues. They are also planning, in conjunction with The University of Texas Medical School, to do more research for CHD at the hospital. We already see an increase in the number of cases taken on at Dell Children’s; people are flying in from all over the world to have Dr. Fraser and his team work on them. It’s amazing to see the changes!

What I’m most excited about is the difference this is making for families based right here in Central Texas. Having a better heart center will relieve the burden of heart surgery for so many families. Up until a few months ago, this quality of care for Texans was only available in Houston, Dallas, or Fort Worth. When my son, Felix, was born, we were flown the Dallas for his surgery when he was days old. His CHD was a shock to us as it wasn’t found until after birth. Before I could even be released from the hospital, Elliot had to pack what he could for Mila, himself, and me, find a place for our dog, lock up our house for an undetermined amount of time, and drive to Dallas. I went directly from the hospital, to the tiny airplane, to the emergency entrance of Children’s in Dallas. We were gone for three weeks and we stayed in a hotel, then, moved over the the Ronald McDonald House. I was dealing with major hormones, just giving birth. The joy of a new baby was being stripped away and replaced by fear of losing a child to something we knew very little about days before. We were balancing watching our two year old daughter, who was not allowed in the hospital, with being with our new baby who had complications from the surgery. Plus we were hundreds of miles away from our home, our own beds, and everything we found comfort in.

As you know, improving the quality of care for CHD patients has been a mission of mine since Felix was born, Much of our philanthropic endeavors in the past 7 years have included funding research for CHD, improving access to healthcare, and improving quality of care in our local area. Last year, Elliot and I were given the opportunity to open an endowment for Dell Children’s Hospital with funds being directed to the Heart Wing. This year, we are matching dollar for dollar, up to $5,000, donated from friends and family members who want to join us in improving the quality of care for children with CHD in Central Texas. Can you help with a donation today?

Click here to support the Dell Children’s Oshman Family Endowment

Please be sure to choose The Oshman Family Endowment from the list.

[fightingfelix]

Celebrating 5 years with chocolate chip pancakes!

[fightingfelix]

Amplify Austin 2016

Dear Friends and Family,

On March 8 & 9, 2016, we are participating in Amplify Austin. What’s that you say?  Amplify Austin is a 24 hour festival of giving featuring nonprofits in Central Texas. The non-profit we are supporting is The Children's Heart Foundation - Texas Chapter.

https://amplifyatx.ilivehereigivehere.org/FightingFelix

The Children's Heart Foundation dedicates itself to bringing health, hope, and happiness to children and families impacted by congenital heart defects (CHD). It does this by funding the most promising CHD research.

We support The Children's Heart Foundation because as many of you know, Felix was born with a CHD and required open heart surgery when he was 4 days old.  The great news is he is a messy, active four year old who's favorite color is green and loves cars, trains, and going to the Thinkery.  However, his condition is not fixed or cured. He will require numerous surgeries in his lifetime.  This organization funds research that could one day help make his surgeries less intrusive or even unnecessary.

We are writing to ask for your help by supporting our fundraising efforts with a donation, reading Felix's story, sharing the donation page on your social networks, or even by creating a fundraising story page of your own. Your tax-deductible gift will make a difference in the lives of many!  As an added incentive, we will match all donations up to $1000.

You can come back and donate any time on Amplify Austin Day, schedule your donation ahead of time so it runs on Amplify Austin Day, or donate now. You can do all of these on our page https://amplifyatx.ilivehereigivehere.org/FightingFelix.

A donation of $25 or more will help in the fight again CHD. We greatly appreciate your support. Thank you!

[fightingfelix]

Walk with us to support Felix and support research for CHD.

Here are just some of the facts: Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States. Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect. At least 10% of all congenital heart defects are first found in adulthood. There is no cure, only treatment. Felix will undergo several more surgeries in his lifetime for this defect.Thanks to increases in survival rates and medical advancements, the number of adults living with a CHD rises by 5% a year and adults with CHDs are living longer, fuller lives than ever before.  Your support will continue the progress.

[fightingfelix]

HAPPY SECOND BIRTHDAY BUDDY!

[fightingfelix]

Felix Updates - Heather

Sorry it's been a while since our last update. I've been having a bit of trouble logging into the website. Plus summer with two kids under the age of four has gotten the best of us and we've been enjoying the ride! We've had tons going on...

Immunology:

In my last Immunology Update, I said we would be getting Felix his chicken pox vaccine once he was completely well and big sister was out of school.

However, since we have taken him off his weekly treatment of Bactrim, Felix got one sickness after another. We've dealt with several colds, a couple of high fevers and even Hand, Foot and Mouth. If there's a summer illness going around, he's been picking it up.

The good news is that he had recovered from them all just as a normal kid would. We've been able to treat the harder stuff with acetaminophen and ibuprofen. He's gotten better and very rarely even had to go to the doctor.

The bad news is that we've had to delay his chicken pox vaccine several times. As I had mentioned, this is a risky vaccine for people with compromised immune systems because it is a live vaccine. I wanted to be sure he was completely well so he wasn't battling multiple illnesses at once.

However, in July....as Dora sings...We did it! Hooray! Lo Hicimos! 

He came through the 7-10 day incubation period with no reaction. I can't explain how happy this make me. We will look into the MMR vaccine next, but I am currently waiting until summer craziness is over. Thanks for your support and positive thoughts.

Dentist:

I'm a big fan of taking the kids to the dentist for my bi annual check ups. It gets a little crazy with them crawling all over me when I'm getting my teeth cleaned. However, what I've read is that it's a great way to introduce them to the dentist. With my kids, it worked out very well. Felix's older sister got her teeth cleaned (at her request) just before she was three years old. Felix beat her to the punch. Our visit this week, he sat in the chair at and had his teeth cleaned. He didn't want to be left out! 

Speech Therapy:

We had Felix evaluated for Speech Therapy this summer. Felix, at the time, was going on 20 months old and had fewer than 20 words he would say. His evaluation said that he was in the 5th percentile as far as vocabulary. In other words, he was way behind "normal." However, in all other aspects, such as wanting to communicate, social skills, etc., he was in the top of his age bracket. The therapist even commented how he would be a great candidate for President one day because of how social he was. They gave us some tips on ways to increase his verbal skills and they're working! He's starting to have new words every day and it's been so much easier to communicate with him. Yelling and screaming has decreased dramatically and things at home are so much better because of it. We have him enrolled in a toddler program this fall to help even more.

Vacation:

Thanks to the grandparents, we took a wonderful vacation in the mountains this summer. Felix did great. On the plane on the way there, he was wonderful. He sat in my lap the entire time and read, colored, snacked and played. It was the most fun I've ever had flying with my children. Felix handled the altitude in the mountains perfectly. He hiked up and down a trail to look at a waterfall, ran in mountain grass, played in a creek and went down an Apline Slide with me. On the way home he wiggled, screamed and acted just like an almost two year old would act after a week not sleeping in his own bed. 

What's Next:

We will be setting appointments for his two year pediatrician check up, his October Immunology check up, and looking into getting his MMR vaccine. We will be looking into a toddler play program that helps with progressing his speech and, I know this sounds a little crazy, but start forming his own social circle. I feel like this has been lacking with him. We've been so focused on keeping him alive and well that we've not been getting him friends of his own. I'm pretty excited to start this adventure with him.

Last time I had a two year old...shoot, the past two years have been the toughest years of my life. Sometime this summer, things just got easier. Things have finally started to fall into place. I can't put my finger on what it was...less doctor appointments, finally perfecting Felix's medical team, Felix's increased verbal skills, Elliot not traveling as often for work, etc. ...but I look at my journey and realize that, right now, things are the best they've been in almost two years. I'm at a point that the medical and developmental issues are at a manageable level and I'm hopeful it continues. We'll keep letting everyone know how things are going and when it starts to get rocky again, but I'm hoping updates are less and less frequent now that things are starting to settle.

As I've said before, I feel so overwhelmed with love and support through this process. When I was prepping for Felix's birth, I had all of our emergency contacts on a document titled, The Great Froggie Adventure. What an adventure he has been. It has been extremely hard and one I never would wish on my worst enemy. However, it has really shown me how much people care and support me and my family. Thank you all who have supported us and continue to support us for past 22.5 months.

[fightingfelix]

Cardiologist Appointment 7.8.2013 - Heather

Felix had his Cardiologist appointment Monday.

I've been a little nervous about this appointment. I've noticed this summer Felix has been slowing down. Not every time, but many days we will be outside playing and he is done about 20-30 minutes into it. All he wants from that point on is to go inside, sit in a stroller, or be held. He is constantly drenched in sweat and I can tell he's tired. Many kids with Felix's condition don't handle heat well and it causes them to self regulate and stop sooner than most kids. However, most of the time we go out, it's earlier in the day...between 9 and 12. We try to be home for lunch and we have our naps during the extreme heat of the day.

Why should something like that worry me? Well, if Felix's heart isn't working like it should, he might start to slow down, sleep more, sweat more, stop eating, or stop growing. These are the small signs to look for before he needs a procedure to help his heart. These signs don't typically call for immediate intervention, but they can lead to something big if ignored. I called a few weeks ago just to check in, but with his regular cardio appointment so close, the doctor thought it would be okay to wait for his appointment.

Here's Felix during his ECHO. 

Overall he was great. The most comical thing was that his diaper was on wrong and he ended up peeing down his leg and onto the floor. He got a little antsy during the EKG and the ECHO, but most kids at this age do. The best thing about the appointment was the doctor said Felix is STABLE! Hooray! 

He has two issues with his heart right now, both of his valves. However, both are not getting any worse and his heart is handling things just fine. The nurse practitioner also suggested humidity might be a factor in his slowing down. The more humid it is, the harder it is for him to breathe and therefore, it slows him down. That would explain why some days he's okay and some days he lasts 20 minutes. They reassured me that his behavior was normal, but to call if I have any concerns.

He wants to see Felix again in January...that's right, 6 months from now! That's the longest he's ever gone between Cardiologist visits. I will say I feel relieved. 

[fightingfelix]

Immunology Update Spring 2013

Felix getting his pulse ox taken during his most recent Immunologist appointment

There's been a few (good!) changes to Felix's Immunology treatment plan. 

A few months ago, Heather took Felix into the Immunologist we had been seeing since we brought him back to Austin. The wait to see the doctor was over an hour after the appointment time. Then, when the doctor came in to see Felix, he misread the chart. We took him in to get blood work done and the technician couldn't get the blood they needed from Felix without sticking him multiple times. To sum it up, the experience was something we didn't want to repeat.

After checking with Felix's pediatrician, we decided care should be transferred  We are sure the Immunologist is great here in Austin, however, there isn't enough of him to go around. Texas has implemented increased newborn screening for Immunology issues in babies. Overall, this is a good thing for all babies, however, it has significantly increased the number of patients this doctor needs to see. We decided, since we had the previous relationship with Dallas Children's Medical Center and have been impressed with the care there, that we should try there again. A three hour drive might be worth it if we get a better experience in care for Felix, especially as these are quarterly visits.

The doctor we chose was the one Felix had when we were in the hospital. She works with the Heart Team at Children's Medical Center so she has more expertise with kids with Felix's condition. It's a bigger practice so they aren't as overwhelmed with the influx of patients that Immunologists are seeing throughout the state. 

We went to visit the doctor and the results were more in line of what we see from Felix. She says his immune system is working just the way it should be for someone that has been through what Felix has gone through. He's reacting appropriately and she is happy with the levels of the various numbers related to his blood and immunological system.

She has taken him off his weekly antibiotic treatment. She feels his immune system can conquer illness on his own. I will say, there has been an increase in sickness in our house since taking him off the antibiotic  but everything he has been able to get over either quicker or in just as much time as his big sister (who often gets the bug first). We will reevaluate in the Fall to see if we need to reintroduce this for cold and flu season.

She also said that she did not want to see him back until October, which was (at the time) 6 months from the appointment.  Another good piece of news!

The best part is she thinks he's ready to try live vaccines. Now, many heart babies aren't advised to do this. It's risky. However, with the increased chances of getting chickenpox without the vaccine (a study from Kaiser Permanente Colorado Institute for Health Research, Denver reports up to a 9X chance), I think it's something we definitely need to do. There is a treatment for chicken pox if he reacts poorly. Although getting chicken pox is a chance we take, I think its better for him to get this in a controlled environment.

We are waiting until he is completely well and big sister is out of school so it will hopefully be before the end of this month. If everything goes well with that vaccine, we will evaluate his options to get the MMR.

We'd appreciate positive thoughts. This is something that has been weighing heavy on Heather's heart since he was in the hospital. She is excited to hopefully move forward.

[fightingfelix]

Congenital Heart Walk 2013 Edition - Heather

Hey Fighting Felix Fans!

I wanted to give you an update about the Congenital Heart Walk back in March. Thank everyone for your support. Our team did great! This year we raised $2,480 which is more money than last year! Big shout out and thank you to my brother in law, Russell, our biggest fundraiser for the second year in a row! 

The overall walk did great too. We raised over $71,000 and that is over double of what we did in 2013 AND we tremendously increased participation. Other chapters are looking to us as an example on how to grow their walks. Personally, I'm overwhelmed at the support the community gave us. 

Thanks to my family that came out to support Felix. We love you guys tremendously and we really felt loved.

Here's a picture of our crew:

Like the shirts? Me too! I was excited to get one. I wear it pretty often. Thanks to Trudie and Andrew for making those happen.

If you missed the walk and still want to donate, fundraising for the Central Texas Walk has come to an end. However, CHF TX and ACHA are still fundraising for our Rio Grande Valley Walk. You can donate here until May 26th.

We might be adding a Texas city to the list in 2014. If you're interested in starting one in your city, let me know!

Thanks again everyone for your support.

[fightingfelix]

Pediatrician Appointment 4.11.2013 - Heather

Sorry for the delay. I thought I had already posted this one.

Felix had his 18 month well check. Happy half birthday, Buddy!

Overall, Felix looks good. However, he's a bit short on weight gain. Actually, he's lost a little since his last visit. Doctor isn't alarmed yet, but we need to offer him lots of food and come back in a couple months for a weight check. If it doesn't turn around, we might need to get him on Pediasure or something like that.

They did the 18 month Autism screening and he passed. They'll test him again at two years old.

[fightingfelix]

Welcome to Toddlerhood! We are so proud!!!

[fightingfelix]

Cardio Appointment 3.18.2013

Felix's Bo and I accompanied Felix to his Cardiology appointment this morning. The news was good. He is gaining weight and has lots of energy. The results show that Felix is stable! This is by far my favorite news to hear. They want to see him in four months.

Felix was great during the two plus hour appointment. Not all smiles, but I think because Bo was there, he was extra good. Here's a picture of Felix and Bo during the EKG:

Here's Felix getting ready for his ECHO:

My second favorite part of the appointment (behind the news he is stable) was when he climbed up the step stool and onto the exam table by himself. He sure can climb!

[fightingfelix]

SuperMom? What? - Heather

This post is the first one that I can think of that didn't deal directly with Felix, so bare with me. I've had such a huge amount of support from my Mom of the Year post. Thank you. 

However, something that one mom said to me on the playground has really stuck with me. She called me a SuperMom. She said that she was amazed with how much I can do and I think I heard a bit of admiration in her tone. I was a little shocked.

This woman was 9 months pregnant and chasing a two year old. This same woman was telling me she doubts she would have the nerve to call me to help her with bath time when her hubby is out of town because I have kids of my own. Meaning she's leaning over a bathtub with her huge belly and doing it all on her own. I've watched this woman for over a year deal with a kid that didn't handle teething well. Her daughter would flop on the floor and throw a complete tantrum over nothing because the poor thing's mouth hurt for a week plus with each tooth. It was hard for her to bring her kid to playgroups or even out in public. To top it off, recently I learned the mom has serious medical condition. She has hours of breathing treatments she must do every day. I don't know how she does it or handles it all. I find her incredible.

I think that's the thing. MOST moms are incredible women. I can't even say that this mom was the only one with an amazing story.

Another mom I am friends with has three kids, the oldest in middle school and the youngest is three. Both her and her husband have volleyball teams they play on weekly. She's constantly volunteering at her kid's school. The five of them take a 18+ hour road trip each year to visit family. Her family does their own remodeling on their house. They've laid floors, done sprinklers, and even landscaped their own yard. Her last project was, while the three year old plays in the yard, to dig up portions of their pea gravel pathway and lay down better weed barrier. They are amazing to me. 

I have one mom that's going back to school to get a second bachelor's degree at night all while still being a full time stay at home mom. She turns her kids over to hubby when he gets home, goes to class and then does homework during nap times and until midnight every night. Then she deals with sleep issues that young kids have and is still up every morning with them.

A mom I go to church with lives twenty minutes away from church and can get both of her kids up, dressed and in the seats by herself every Sunday for 8:00 mass without waking her husband. These kids are always dressed to the 9's and she always looks fabulous too.

A few moms I know are running their first 5K's and retraining to run marathons and 1/2 marathons, all with a full plate of kids, jobs, and extras on top of that.

All of these women have great husbands and support networks. They inspire me to be a better person. I'm so lucky and feel extremely privileged. I have an amazing husband that handles night time wake ups, changes just about every diaper when he's home, handles most of getting kids ready for the day and does bath and bedtime every night. He rarely travels for work, does laundry every week, dishes every night and will come home to be with me just because I have a bad day. I have an amazing support network. My family and friends are less than a phone call away if we need them. We are able to afford for someone to come in once a month to clean our house so I can focus on the kids and take care of myself. I could go on, but honestly, I don't know how single parents and the parents that have to move every few years handle it. I know I am very lucky.

As I said before, I think I'm a good mom, but SuperMom? Every home, every mom has a story. I encourage you to find out those stories. When I learn another one, it inspires me to push myself even further.

[fightingfelix]

Woodwork - Heather

To start off with, I've said it a bunch, but I want to say it again...I’m so lucky. I've had some great support and wonderful people come forward during the past year and a half. My family has been through some dark times and when I've felt things were too much to bear; people come out of the woodwork just to lend a hand, calm me down or cheer me on. Overall, we've strengthened so many relationships and realized our support network is bigger than we ever thought possible.

However, we've still had some collateral damage. We've lost friends over this situation. We've lost touch with people and some have kept their distance. Some of that is that our lives have grown apart since having kids. However, there’s a TA blog I follow called Nothing For Granted that posted a while back regarding collateral damage of friendships and family members. It’s not exactly how I feel, but sometimes it’s pretty close. In that blog post, she refers to another article written about collateral damage. Really, it’s pretty common.

I honestly don’t fault people for giving us space. Not everyone knows how to respond during such an intense period in someone’s life. I say the wrong things all the time and sometimes I feel like it’s better to give space than say the wrong thing or be in the way. I think to myself that someone else that has been through it before or knows the right things to say has them covered. I've done it for all sorts of traumatic events…when someone is going through a divorce, has a miscarriage/loses a family member, has had trouble conceiving, or is in a terrible accident. I don’t know what to say so I say nothing. I send them some positive thoughts and I hope one day in the future I can pick up the phone, check in and catch up. Sometimes that’s the case, sometimes it’s too little too late.

I’m currently dealing with a different kind of collateral damage. Not the kind that happens when someone is first dealing with a disaster, but the kind that happens later. The kind of friend that sees my kid as ‘fixed.’ The kind that doesn't understand the toll it still takes on us day to day. The kind that just wants me to move on with my life and get over it already. They think my tragic event is over and my life can and should go back to the way it was before. They don’t understand that’s not an option. They don’t get that as much as I am trying to make my family seem like a normal family, it’s a struggle and we are not a normal family.

I was having one of those negative moments about the big CD when, out of the blue, I get an email from a friend this week. The title of the email is I See You! I’m intrigued. Did she have a picture of me? Where does she see me? 

She writes that she sees the effort I put into my kids. She sees my fears about my son's health and among other things, she writes, “I also see that there are a lot of people out there that see Felix as a normal little boy and just don’t understand how someone would consider him a ‘special case’. ‘He made it, he’s healthy now’, ‘move on’ must be some of their thoughts. I see how frustrating that must be and I know how, unfortunately, untrue that is. I see that any day (hopefully as long as possible away), a normal Dr. appointment could turn into the scary realization that Felix must have another surgery tomorrow/next week/month, etc.”

This email brings tears to my eyes even several days later. That’s exactly how I feel.  She gets me.

My friend sees...

-How a simple illness can quickly turn into an ER visit.

-How hearing a friend’s kid got sick after a playdate turns my insides and keeps me on high alert until the incubation period is over.

-How we are constantly tracking medicine.

-How we are on the phone with doctors’ offices almost weekly chasing appointments, information or test results.

-The toll it takes on me having to hold my screaming infant child while he gets vials of blood drawn every time he receives an immunization.

-Me calming an upset sibling because her brother has to go through yet another test or endure another shot.

-How we try to find ways of paying the next set of medical bills so they don’t drain our savings.

-How we miss playdates because a friend just got over a stomach bug a few days before and I’m terrified my kid will get it. 

-How something as simple as a weigh in at a doctor’s office, cold hands, or a sweating forehead has me on pins and needles.

-Me wondering, does he look bluer than normal?

-How I feel like I miss out with him because instead of going to the park, we are at another doctor’s appointment.

…all while trying to raise him like a ‘normal’ boy.

That’s exactly me.

Thanks everyone for treating Felix like a normal kid and for treating us like a normal family. However, this life really sucks sometimes. Once in a while, it’s good to know that people see that my life isn't normal. That people do see the extra effort we put into it. This friend reminds me I am not alone. We may have lost some friends in the fight, but I’m so lucky for all those that support us and those in this woodwork that we seem to have. 

[fightingfelix]

Happy Heart Month! - Heather

I know it's been over a month since I wrote and my last post was a bit depressing. Thanks everyone so much for the support you gave me. It was a rough day.

However, the past month has been wonderful. Felix had his 15 month well check with his pediatrician and he's right on track for his age. He, hopefully, got his last round of Synagist ever (we have another appointment scheduled for March 7th, but, fingers crossed that cold and flu season will be over). The PAN Foundation came through and approved us to help us pay for the Synagist (yippee!). There was one little hiccup. The medicine was shipped to our home instead of the doctor's office. I know it's not unusual to have medicine shipped to you, but it was still a bit unsettling to open a box and see this:

I've been extra busy with Heart Disease Awareness Month. Governor Rick Perry declared February 7-14 as CHD Awareness Week in the State of Texas which was very exciting.

We wore red on the 1st for Heart Disease Awareness in honor of Felix. Check out this great picture my three year old took of us:

The Children's Heart Foundation - Texas Chapter had it's Debut Cocktail Reception Fundraiser on the 13th. (Go ahead, check out the link. Felix is on the front page!) The final numbers are still coming in, but it looks like we're on track to have over $10,000 raised for the chapter. I was lucky to meet Heidi Cruz, wife of U. S. Senator Ted Cruz. She is so nice and had so many great things to say about our organization. We had an extra special poster made for Felix to display at the event.

The kids and I went up to a Round Rock City Council Meeting to support CHD families accepting the city's proclamation for CHD Awareness Week. I've been helping CHF-TX spreading the word about it's coloring card contest. I went to Dell Children's Hospital with another heart mom and a CHD survivor to bring goodies to the nurses and had a meeting with a couple of new heart parents (which was actually very emotional for me). We went to Build-A-Bear this month too. This month Build-A-Bears nationwide are asking guests, when they check out, to donate to The Children's Heart Foundation.

We are also participating in the annual Central Texas Congenital Heart Walk on March 16, 2013. Felix, Mila, Elliot and I are all registered to walk and are hoping people will walk with us. I've been working on raffle prizes, kid activities, and trying to get the word out. If you know anyone that would be interested in donating, walking, volunteering, or hanging a few fliers up, let me know or check out the website. 

Overall, things have been great. Thanks again everyone for your support.

[fightingfelix]

Mom of the Year - Heather

I'm Mom of the Year today. Today, my oldest was 15 minutes late for her first day back at school, her homework's ink was still wet from printing, I ran out of the house with no coat on my youngest that has an immunity issue, and I sat in my car crying and thinking that I'm barely holding this together. 

How did this happen to me? Well...

It all starts with a big Happy New Year! Everyone knows what the beginning of the year brings when you have a person in your family that has health issues...DEDUCTIBLES!

We're pretty lucky in that our deductible for Felix is only $3,000 this year. We're 10 days in and have already met it. This means that his healthcare is covered for the rest of the year. That's the silver lining. The cloud is that we had to come up with $3,000 already this year. That's no small chunk of change even for a well off family or one that has an emergency fund.

We plan for it as much as we can, but it's still substantial. We used it for his Synagist injection so, thanks for your concern, it wasn't an emergency. At Felix's last injection, the nurses told us of a program that would cover up to $2,000 of this cost. It doesn't look at income, it just covers the drug since it's so expensive. I called and got approved. This knocked what we needed down to $1,000. That's still a huge amount of money, but we could tighten our belts for a few months, dip into savings and pay it back when we had it.

The pharmacy called on Tuesday to confirm our information for Felix's appointment on Thursday. I thought it was cutting it a bit close since it was Tuesday and they still needed to ship the drug. They reminded me about the deductible portion and told me about the program I was already enrolled in and another one that would cover up to $1200 of the cost through the PAN Foundation. I was told it doesn't take long to get approved and gave me the number. I gave them my credit card info and told them that I would call the PAN Foundation. The person then told me that they needed payment before they could ship the drug. Before I could tell them to just run my card, they said they would call me at 4pm before the last shipment for the day to collect payment in order to give me a chance to call the PAN Foundation. I told them I would call them back before that if I had heard anything.

I called the PAN Foundation and they didn't have my doctor in the system. They needed to get in touch with them. I called my doctor's office and left a message and went on with my day.

At 3:53 the phone rings. I expect it to be the pharmacy, but it's not. It's the office that administers the drug. They were told the pharmacy was waiting on me to call them with payment so they could ship the drug. I told them I would follow up with the pharmacy, but I was under the impression the pharmacy was going to call me back if they hadn't heard from me by 4:00.

During this phone call I'm struggling to get two kids in carseats to go the grocery store. It is not really the best situation for me to call. I get them in the car and drive through the pouring rain to the grocery store. I get there around 4:05, pull out my phone and scroll through the contacts. With kids safely strapped in their seats and in park, I find the pharmacy and give them a call. The lady that answers my call is nice, gets my information but her systems are down. After several minutes of waiting and her trying to pull up our information, she offers to call me back in 10-15 minutes when her system is back up.

About 40 minutes later (maybe longer since I'm already done grocery shopping with two kids in tow), she calls me back. We go over payment and she processes everything. At this point, we've missed the last shipment for the day, but she can overnight it and it will be there Thursday morning for Felix's appointment. The shipment usually gets to the office around 10, maybe 10:30. I call the office that administers Felix's injections and we move the appointment back to 10:45 to give us a bit of leeway.  All's stressful, but manageable.

This morning has been a crazy morning in our house. Hubby left early so he could get the car serviced, I needed to print a photo for preschool and the printer was not working, and both kids are, let's just say they are in the opposite of a play-by-myself-happily kind of mood.

I finally got the printer to work on paper that would not dry very quickly. Regular paper wasn't working for some reason. I figured a wet photo was better than no photo at all. While packing lunch for my oldest and getting her ready for school, I received a phone call from Felix's pharmacy. It was a recording that said that my package had been shipped on the 9th (Wednesday) and should arrive on the 11th (Friday). To me, that means Felix's Synagist is delayed a day. This may not sound like a big deal to an outsider, but it is a BIG DEAL.

The people that distribute his Synagist only have teams available to do so Tuesday and Thursdays. It takes three people to administer Synagist, me being one of them. I hold Felix while he gets two injections. Two different people administer the drug at the same time to minimize pain and stress. The Synagist manufacturer recommends that this be administered every 28-31 days during RSV season. Waiting until Tuesday would be 33 days meaning the antibodies are weak and inefficient after that. Felix will be susceptible to RSV during one an extremely bad cold and flu season. He could easily end up in the hospital.

The Fear set in. Every parent knows The Fear, but it intensifies in parents with medically needy kids. The one where I feel my kid is going to end up severely ill or that I could even lose my child because I wasn't cautious or preemptive enough. It's why first time parents disinfect toys that have been on the floor in a public place. With my oldest, I don't have this fear as much any more. I find her extraordinary but very normal. With Felix, the memory of this is too fresh, even 14 months later. It surges through me when someone refers to people with Truncus as living on borrowed time. It's the reason I pour over other parent's blogs to learn different scenarios that could happen and am drawn to what went wrong. I look for symptoms and issues other parents don't worry about all while trying to raise my kid like normal a kid. Just when The Fear begins to subside, something pulls it up again. Today it hit. The pharmacy's phone call was my trigger.

I called the office where his Synagist is administered and they said they would have to call me back but we'd get it worked out.

I called my husband and asked him to tell me everything's going to be okay. I'm in tears and scared. He walks me through it. We can just stay in for the weekend and on Monday. His parents who are visiting us this weekend will understand. We'll make it fun, it's all going to be okay. Best. Husband. Ever.

The office called me back. They left a message with the pharmacy. We go over options. They let me know the antibodies don't just disappear after 31 days. Studies have shown that the antibodies can still be around 35 days after the injection. We could do the injections tomorrow, one at a time since the team won't be there. However, the next visit will need to be at least 28 days later so we will run into the same window then since they only have the team available on Tuesdays and Thursdays. 33 days now or 32 in a month. As much as this sucks, it actually gives me piece of mind. The chances of his body still fighting off the RSV are still very good, even if we wait until Tuesday. So we set the appointment for Tuesday.

All throughout this, I'm trying to get my 3 year old to get dressed, to use the potty, wash her hands, and get shoes on so we can get her to school. Needless to say, she's still not dressed. We finally get her dressed, ready and all of us out the door. She's 15 minutes late for school.

I get home and Felix is a mess. He's been showing signs of being tired for an hour but with the chaos of the morning, his nap had to wait. I got him down.

About 25 minutes into his nap, the office called me that administers his Synagist. It came. It's here. I told her that I would get him up in about 5 minutes, throw him in the car, and should get there before 11am. I get him up, shoes on and out the door. In the rush I grab his coat, but I just want to get there. It never gets put on.

What the heck was the phone call I received this morning? I can only assume it was a confirmation phone call that Felix's medicine shipped. It was not meant to tell me that my medicine would arrive a day late, it was just confirming that it shipped when it was suppose to. 

When I got home from getting his injections, I sat in my car for a few minutes and cried. One phone call can rock my world so significantly. It wasn't even anyone on the phone to deliver a tragedy to me. It was a confirmation phone call. I confirmed to myself what I already knew, I'm barely holding this together.

I am that mom that left the house without bothering to put a coat on a child on a winter day. I am the crazy housewife that calls her husband crying when he's at work. I am the mom that brought her kid to school 15 minutes late on her first day back from holiday break. I am the mom who's kid's homework's ink is still wet. With one phone call, my whole world was sent spiraling, so I am the mom that's barely holding it together.

And you know what? I'll take my Mom of the Year award and wear it proudly. Yes this morning wasn't my best day from an outsider, but I know I'm a great mom. That outsider has no real idea of what I do every day, what lengths I go to to keep my kids healthy, safe, loved, and educated. I do and I'm lucky that my husband does too. I commented on someone's Facebook wall this week that not every job is for everyone and that not everyone will love every aspect of their job.  Most days I love what I do and am fulfilled in a way I never would have been if I didn't become a mom. We all have bad days, weeks, and months with our jobs. However, I know my kids and my husband love me. I know my family has an advantage of me staying home with my kids and I know my job as a mom matters more than any other jobs I've had. As stressful as this week's been, things are overall pretty great.

[fightingfelix]

Letters for Pulse Ox Screening - Heather

Today I printed out my letters to my state representatives and they're going in the mail tomorrow. These letters ask for the Pulse Ox test be done on every newborn. We were lucky this screening saved Felix's life and not every family is as lucky as ours. Each year in America, about 4,000 babies don't make it past their first year due to CHD. We are proof that this test saves lives.

This test is recommended for every baby by the Secretary's Advisory Committee for Heritable Disorders in Newborns and Children. It's up to each state to implement this screening.

If you want to help, please write your state representatives. My letter was one adjusted from the Pulse Ox Advocacy website. You can also check out this website to see where your state is in the process of implementing this screening. In Texas, you can find out where you can contact your representatives here.