Thankful on Thanksgiving

Today's episode of The Crosby Show is brought to you by The Pater Familias aka Babydaddy aka Lance. So excited that he agreed to write this one and hope he will agree to more (full disclosure: he actually wrote Episode 1, but since I edited it, I ended up taking credit for it. Shame on me!).

Ok...so i may have had a hand in the first one, but yes..shame on you!  

I struggled to kind of get this thing started because I kept thinking of 100 different things to say but 0 ways to say them. All the things I am thankful for this Thanksgiving were running together with the things I'll be thankful for in the future.  So, Happy Thanksgiving to everyone from The Crosby Show!  I also kept reading Carmen's other posts.  I've enjoyed her documenting these times and events in our lives.  We both own the fact that we are terrible picture takers.  We crammed a last minute photo session in the day we left from our Honeymoon.  When we got married, the wedding director wouldn't let our photographer <free plug Cauley Photography!> take pictures at the ceremony.  Our neighbor had to give us a picture of our own house during the snow storm last Christmas. I enjoy reading Carmen's entries as much as everyone else. I'm a watcher and a soaker-inner kind of person.  If that's a real thing. And, I like to tell stories the way I remember them... pictures sometimes don't tell the story right for me. It just never seems quit right. So I rely on her for that and she's the perfect person for the job.  She's good people, and Crosby and I are very thankful to have her in our lives. 

Crosby aka Prince aka His Royal Highness has had a full week this week. It started with a tough loss to Mississippi State in Little Rock, then Brandon Allen's truck got egged, then they took a game away from Little Rock till 2018, and finished up with an explosive diaper and 5 shots at his two-month checkup.  So maybe a few of those made it a tough week for his Dad, too.  Despite all the tough things, he continues to, in the words of Robert Randolph... Press On!  He's almost 12 pounds and a little over 23" long.  He took the shots like a champ, but still put up a fight during his morning BOP session.  You win some, you lose some. We're still winning more than losing and that's always okay.  Well, more than okay... its great!  He continues to get more vocal with us and even last night went a verse or two with Momma in the Sound of Music.

  

What I lack for in pictures I more than make up for in memories.  Whenever I need it, or want a picture, I just go and get it, just the way I remembered it.  It doesn't matter if it's a person or an event. It's an experience, and having him has been the ultimate.  It's a pretty cool feeling to know you made another half of you.  Watching him change and grow from day to day, week to week, has been a blessing!  So on  this Thanksgiving, I really am happy for everything.  I'm thankful for people, places, dogs, poops, 21 minutes of bopping without crying, having 20 minutes to eat dinner together with my beautiful wife. I'm thankful for family, friends, and everything in between. I'm also reflecting on those who are with us in spirit.  So soak up this time you have over the Holiday.  Make some memories and save them however you save them.  They're yours after all.         

-Lance

Crosby @ 2 Months

Dear Crosby:

Crosy Bear! You are two months old! I would say that the time is flying by, but honestly, you, me and Daddy know this has been a long two months. As Anthony Kiedis once said, "the years are short but the nights are long..." You sure have changed A LOT in the past two months. You are wearing size 1 diapers and size 3 month clothes. We've worked really hard on getting you nice and chubby and I'm proud to say you now have plump cheeks, several chins and rubber band wrists. You love to nurse, cuddle and do ANYTHING that involves lots of movement. One of the easiest, fastest ways to calm you down is to bounce you up and down while holding you away from us and leaning your little body forward. You love for your Daddy to sing to you. When I watch the two of you together, I literally melt into a puddle on the floor. In the mornings when I'm getting ready for work (after I've pried myself away from you after an arduous, internal struggle), I prop you up in our bed and your eyes follow me around the room. You coo and smile and will try to mimic us when we talk to you. You love to go on our family walks. I carry you in the Moby wrap and Daddy walks your sister dogs on their leashes. This past weekend we tested you out in your fancy BOB stroller and you absolutely loved it! Hallelujah! Get ready Buddy, because we are going to log a lot of miles in that stroller. Before you were born, a dear friend said to me, "Get ready to love him so much that you think your heart will explode." Well, my sweet son, she was right. My heart is exploding. Happy two months, Crosby. We are so grateful that you are in our family and that we get to be your Mom and Dad.

We love you!

If you need anything, let us know.

As we have begun this journey of having a child with CF, a lot of folks have said to us, "If you need anything, let us know." Prayers, thoughts, friendship and understanding is honestly the best way to support Crosby, Lance, and I. 

We've been working so hard on getting chubby cheeks.

I mentioned in my last post that Crosby's diagnosis happened after routine infant screening in the hospital at his birth. However, there is no known family history of CF on either side of our families, so the diagnosis came as quite a shock. Nothing can prepare you for a diagnosis of a chronic, life-threatening disease, for which there is still no cure. On the day he was tested at ACH, as the head nurse of genetic screening and a genetic counselor walked in the room, my heart sank. I had been holding on to the hope that his sweat test would be negative. The nurse and counselor's presence made it clear. He had CF. As they began to talk to us about what the diagnosis meant and what the next steps would be, I felt myself fading off. I didn't want to be where as I was, I didn't want to listen to what they had to say, and I didn't want this to be happening to my baby. Lance seemed to be taking everything in stride. He was calm, he was asking all the questions, he was refusing to freak out. This is a testament to his character. All I could do was look down at the perfect 15 day old baby in my arms and wonder how this could possibly be true.

Since that day, we've continued to go through many emotions. I cycle through grief, denial, anger, depression and fear. Grief, in that I mourn the loss of hopes for a perfect child and normal life. Denial, in that when I look at him, he's so beautiful and and seemingly healthy, I'm in disbelief he has CF. Anger, in that this has happened to him. I know that's a selfish emotion. So many people are struggling with much harder things but I wouldn't be honest if I said the thoughts of "why Crosby" or "why our family" haven't crossed my mind. Depression, in that I feel a deep sadness about the diagnosis. I feel sad that our lives will involve this horrible disease, I feel sad that my son will be aware of his own mortality, and I feel helpless in knowing there is nothing I can do to change that. And finally, fear in the unknown. He is healthy now, but all the "what-ifs" swirl in my head and torture my thoughts. I fear that his health will decline and I fear that he may die.

BUT, and I hope you're still reading after that terribly downer paragraph, as I was discussing all my fears with Lance the other night, he said to me: "If you keep worrying about what's going to happen later, you're going to miss out on what's happening right now." Dang, nothing like a proverbial hit upside the head! Crosby is so perfect and we are so blessed. I don't want to miss out on a single moment with him. I want to cherish every minute. Lance is right. And what he said is EXACTLY what my Dad would've said to me and that is so comforting. So as my fears and doubt and worry start to creep up with their paralyzing affects, I will try to beat them down and just be the best Momma I can be for him. I will love him, care for him, nurture his little soul and try my best to live in the present.

I love him!

So, back to letting you know what you can do. Below is list adapted from material provided by The Cystic Fibrosis Center at Stanford on how to support parents of children with CF: 

Besides the shock of diagnosis, parents new to CF may be overwhelmed by all there is to learn to give daily care, including respiratory therapies, medicines, and nutrition supplements. They may feel pressure to become CF experts too quickly.

Parents vary in their reactions to diagnosis. They have varied ways of coping. One parent may want to learn all about the disease while the other may be too depressed to learn more. CF takes a lot of time and money to treat. Some parents may have to rethink their work, daycare, vacation, school, insurance, travel, and finance plans.

WHAT CAN YOU DO TO SUPPORT A LOVED ONE WITH A CHILD THAT HAS CF?

• LEARN.  Bottom line - learn about CF. The Cystic Fibrosis Foundation (www.cff.org) and the Boomer Esiason Foundation (www.esiason.org) are the best sites.
• GIVE EMOTIONAL SUPPORT.  The emotions can be just as overwhelming as the diagnosis itself. Accept that the parents may be feeling pain and sadness. But also be aware that they may be hopeful and positive.
• DO NOT EXPOSE THE FAMILY TO ILLNESS. For those with CF, there is no such thing as "just a cold." Illnesses can lead to more severe infections for the child with CF. When you visit the family, wash your hands when you enter their home. If the family with CF is coming to your house to visit, and someone in your house is ill, don't wait until they get there to tell them. Call them. Give them the option to stay home. Everyone in the family needs yearly flu shots.
• LEARN ABOUT CF CARE. Daily CF care varies and may include enzymes, antibiotics, vitamins, and other medications. Most children will need respiratory therapy, like the Vest™ or chest physiotherapy (CPT). Ask questions. 
• GIVE TO CF ORGANIZATIONS. Participate in CF fundraisers. By joining the search for a cure, you give hope to the family and lessen their sense of aloneness.
• SPEAK OUT ABOUT CF. Most people have not heard of CF or know little about it. Teach others about CF and the need to find a cure. Teach others about infection control. Involve others in CF fundraisers. Be aware of government funding for medical research at the National Institutes of Health and Public Assistance programs such as Medicaid, Maternal and Child Health Programs, and Adult CF Programs. 
• BE SENSITIVE TO THE TYPE OF STORIES YOU SHARE WITH THE FAMILY. Families hearing about people who have died from CF does not help. Lung transplants may extend the life of a CF patient, but they are not a cure for CF. What you can do is check your license to make sure you are an organ donor. While parents must hope for the best for their child, they live with the fear of the worst. Think about the impact of a CF-related story before you share it.
• TREAT KIDS WITH CF THE SAME AS OTHER KIDS. Children need to be treated "normally." Be sensitive to their special needs and fears, but don't be too careful. Children with CF need limits, just like their non-CF peers.
• EVERYONE'S CF IS UNIQUE. Some may have mild lung disease, others may be hospitalized often for lung, sinus, liver, and GI problems. Many things decide the course of the disease for each person
• WHEN THE CHILD WITH CF IS IN THE HOSPITAL, ASK HOW YOU CAN HELP. Call before you visit, in case the child or parent is trying to rest. If you are sick, don't visit. Don't bring your kids. Ask about special precautions before you visit. Wash your hands when you enter the room. Help with shopping, washing, and cleaning.
• DON'T SMOKE. People with CF work daily to slow lung damage. Do not expose a family coping with CF to cigarette, cigar, or pipe smoke. Second-hand smoke is bad for all. For people with CF, it's worse. This includes smoke on your clothes and hair.
• SHOULD YOU BE TESTED TO SEE IF YOU CARRY CF? CF is a genetic disease. If you are related by blood to someone with CF, it is possible that you can carry the gene. If you're thinking about having children, knowing your status makes a difference. Also, health outcomes are improved with early diagnosis.
• CF IS A LIFE-LONG DISEASE AND COPING CHANGES OVER TIME. People tend to offer help right after diagnosis. Coping with CF is like riding a life-long roller coaster. The best help is long-term support.

Thanks for listening.

Love,

Carmen

Cystic Fibrosis Facts

When we first learned that Crosby had gene markers for Cystic Fibrosis, but before we had the test and received the official diagnosis, we were advised by the folks at Children's Hospital to NOT google. This was hard for a die-hard googler like me. Instead, we both looked on the Cystic Fibrosis Foundation website (www.cff.org) which has tons of current, helpful information. I encourage anyone who wants to learn more about CF to visit the site. For those who may like a quick list, below I've listed 7 things you should know about Cystic Fibrosis:

1.  CF is a life threatening genetic disease that affects around 30,000 people in the United States. About 1,000 new cases are diagnosed each year. 

2.  CF is inherited from the genes of both parents. One in 31 Americans is an unknowing, symptom-less carrier of the defective gene. When two carriers with the mutated gene have a child, there is a 1 in 4 chance the child will have CF.

3.  CF mostly affects the lungs, pancreas, liver, intestines and sinuses. It does not affect the brain.

4.  CF causes a person's mucus to become thick and sticky. The mucus builds up in the lungs and blocks the airways. Lung function often starts to decline in early childhood. Over time, permanent damage to the lungs can cause severe breathing problems or even fatal lung infections.

5. The thick mucus also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

6. CF has no cure. However, treatments have greatly improved in recent years. Treatment may include nutritional and respiratory therapies, medicines, and exercise. Early treatment for CF can improve both quality of life and lifespan.

7. Former NFL Quarterback Boomer Esiason created the Boomer Esiason Foundation to fund research to find a cure for CF after his son was diagnosed in 1993.

Here is Crosby at four weeks old at one of our ACH appointments. You can see that the respiratory therapist is wearing the "gown and gloves" that we mentioned in our first post.

As you can imagine, some of the facts above are a little alarming. Especially when you are brand new parents learning that your precious, tiny baby has a serious, incurable disease. We remain hopeful that because of his early diagnosis (thank you State of Arkansas for doing routine infant screening at birth!) and our commitment to his health, that we can keep him as healthy as possible.

-Carmen and Lance

Episode 1

Dear Friends, Family, and Fans of Crosby:

We thought we'd give a little update as to how our boy is doing on his 6 week birthday. We are starting to see glimpses of a much happier little guy! The last week and half he's really started to show some of his personality. He is interacting with Mommy and Daddy and cooing and smiling alot.  Since receiving the CF diagnosis on October 3rd we've gone through a few changes and slowly settled into a "new routine." The routine will continue to change but the steps we take will remain the same.

STEP 1-  TreatmentsMost people know that mucus build up in CF patients affects their lungs, but it also affects the pancreas and digestive system as well.  The mucus builds up around the pancreas and blocks it from releasing enzymes into the digestive track.  The enzymes attach to the food and slowly break it down for the body to absorb the nutrients as it travels through the digestive system.  Crosby currently has pancreatic insufficiency and will continue to have those symptoms. To combat the insufficiency we have to give him enzymes before every feed.  The enzymes will last for 45 minutes to an hour, meaning any feed lasting longer will require more enzymes.  They have worked like a charm since the first time and continue to be a huge part of his day to day health.  The second part of his day to day health are his breathing treatments and CPT exercises or better known as "bopping".  He takes 2 breathing treatments and gets bopped 2 times a day.  Breathing treatments consist of 2 puffs from a Ventalin inhaler with chamber and baby mask.  Very soon after the inhaler we start bopping, which is always a toss up.  Bopping consists of firm patting on 10-12 specific areas around the chest and back for 3 mintues per area or 30 total minutes at minimum.  Sometimes he hollers and screams, other times he sleeps through the whole thing.  It breaks our heart to hear him get so upset when doing it but we know its for his own health and we assure him of that every time.  Bopping breaks up the mucus in and around his lungs and allows him to cough it out or move it along.  His scans don't show him to have any mucus build up in his lungs for now, but they want us to be proactive to prevent infection or damage to his lungs later. Below you can get an idea of what bopping is (this was a good session). 

STEP 2-  Team CrosbyWe are very thankful to have Arkansas Children's Hospital (ACH) so close.  Crosby will see his team at least once a month for the first year of his life and then graduate to every 3 months as he gets older. Team Crosby consists of 5 specialists in the Pulmonary Clinic - his Dr, nutritionist, respiratory therapists, social worker, and nurse.  Each member is specific to him but may also have other patients individually.  They have been nothing but supportive, patient, and very positive for us as we start this journey.  He will continue to see the "FAB 5" until he becomes an adult. Part of the deal with having CF is that he can't be around other kids with CF.  As he gets older he will have to wear a mask as he enters clinic.  Likewise, all his doctors and nurses change their gown and gloves every time they switch rooms as to not pass germs or bugs from one CF patient to the other.

STEP 3-  Help of family and friendsThis is the part of his day to day health that everyone can contribute to.  Hand hygiene around him and in our home is one of the best things we can do to keep him germ free. Before anyone is allowed to hold or touch him we have to make sure we wash our hands and use hand sanitizer. We are also asking that everyone get updated with their flu and pertussis (whooping cough) shots if they plan to spend time with him. Another request from us is to refrain from kissing on him.  I know we all want to plant one on his chubby cheeks but  we have to limit his exposure to things (besides, he sometimes smells like sour milk and baby toots!). This will get better as he gets older and begins to build up his immunities.  Recently his pediatrician has instructed us to be extra cautious during the cold and flu season so as to not unnecessarily expose him to illness.  In her words, we "need to be very, very careful." This means he can't be around people who are sickly, recently sickly, been around those who are sickly, or any children.  Sickly includes things like colds, runny noses, coughing, or flu like symptoms.  This doesn't mean we don't want to share him with everyone, it just means it will be on a limited basis. We know this sounds like a lot, or maybe unfair, but its what will keep him healthy and it's only temporary.  These things will lax as he gets older and his immune system becomes more effective. Having everyone adhere to these requests will best serve Crosby and keep him from getting sick or having to visit the hospital. 

We love and appreciate all of our friends and family and are excited about this time in our lives and want to share it with all of you.  The visiting restrictions are only for a very short period in his long, healthy life.  There will be plenty of time for us to spread the Crosby love with everyone.  We don't want anyone to think we are shutting them out of his life, but understand that his health is our number 1 priority at this time. We plan to continue to send out updates to everyone on a frequent basis.  Prayers, phone calls, and texts are always welcome....and home cooked meals (Lance wanted me to add that.)


Stay tuned for the next episode!

-Carmen and Lance