A Brother's Prayer

I am not the most diligent journal writer but found this page last night that made me cheer.

August 30, 2011

“Frank had today off for kid appointments. We all went to Orson’s ultrasound this morning and they {Maelee and Charles} were excited and did well. The heartbeat of the baby silenced them. This morning when Charles was praying and I was helping him he asked Heavenly Father to help Maelee be brave and courageous at her appointment and for her throat swab.” Pause on the journal entry….

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Explanation of a CF throat swab:

Throat swabs happen at every quarterly CF appointment and they happen more if the CF person is having to go in more often if they are sick or have just finished a certain antibiotic. It’s your basic hold the tongue down with a wooden stick and then reach way back into their mouth with a long q-tip and roll it around to gather a “sample” which is then tested for any bacteria (MRSA, pseudomonas, strep, e coli, etc, etc, etc) and results of what is found is reported to the doctor and the patient and medicine is prescribed as needed on top of what they are already taking. Eventually with age a CF person can learn to get their doctor a sample without the swab, but for kids it’s really the only way.

Maelee quickly learned to be leery of any person coming close to her face at the doctor’s office. She would go into this fearful rage and clamp both hands over her mouth and curl up into a ball and refuse to let these throat swabs happen with any ease.
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JOURNAL ENTRY CONTINUED………………

“After that whenever the throat swab was mentioned throughout the day by her, she was cheerful and optimistic. When the Doctor finished his exam he said like always, “OK one more thing,” and got the swab out. Maelee visibly gathered her courage and said out loud, “I CAN DO THIS” and then growled at the doctor like he taught her and let him do the swab. When it was over she had a big smile and she and all of us were so proud. She instantly got up and ran over to Charles and said, “Your prayer helped me brother we did it!” and gave him a huge hug. We were all so proud of her and her success.”

Reaching Rena

I was born in March and she died in December of that same year. So I never had a relationship with her on earth. But I am pretty sure that Rena is one of my best friends. I aspire to reach Rena status some day. She adopted my Dad when he was a baby and moved to Arizona. She owned a restaurant with her husband in Safford, Arizona called Brown's Café. When her first husband died very suddenly when my Dad was 16 she raised him alone and continued to run her restaurant. Eventually she remarried to a sweet man named Leo and they moved to Lakeside, Arizona where she was self employed as a seamstress.

 

It was their home in Lakeside that I got to know her. Even though she had been dead for a long time her magic remained in the home. She could make anything. Evidence of her skills were all over the walls of her home. She would sew swimsuits for my older sisters when they were kids, she crocheted intricate doilies, she had incredible taste in color and furniture, and her artwork was unique and one-of-a-kind. 



Rena and her first husband Ralph alongside a mirror from her bedside table and dishes from her kitchen.

My favorite thing to do at her house was carefully go through her sewing machine drawers. My parents would take us up to visit my Grandpa throughout the years and being there in there home is a pivotal memory of my childhood. I have had a chance recently to work on finding more names on her side of my family tree. That is when I saw that her older sister's name was Ruby. I tried to sell my husband on the name "Rena" for a long time, but it didn't fit. When I mentioned the name Ruby though, it sounded good to both of is. I am sure that naming our new baby Ruby after my Grandma Rena's sister will make her just as happy.  Hopefully she also appreciates the fact that I have learned how to do victory rolls to my hair because she inspired that too.

Rena and my Dad fixing a car together.

Rena in Brown's Café in Safford, Arizona

 

4 Phone Calls & a Meatball Tree

The first phone call came when I was home with a napping Maelee waiting for Frank to get home from work. The man on the phone was Maelee’s then pediatrician. He asked me if I was sitting down, and then told me that he received results from some tests and that she had Cystic Fibrosis. I didn’t know what it was or meant but I was immediately panicked. I went to her bedroom and checked her crib to see if something was visibly different from when I laid her down for her nap. Then I called Frank as he was headed home on the 101 freeway and told him what the doctor said. He immediately began asking me questions, none of which I knew the answers to. Then when he got home he joined me in my hunt for answers on the internet.

The second phone call came as I was attempting to get an obstinate toddler (Maelee) into the car to run an errand. This time it was the genetic counselor that worked with us on our amniocentesis. She did not make any small talk, which I was grateful for as I recognized the number and my heart was already in my throat, and she quickly told me that the amnio had revealed that our baby boy was a carrier of Cystic Fibrosis but had only one copy of the mutation and did not have the disease. I remember feeling like I should have cried or something but I was only happy and relieved and cheerfully made the call to Frank with the news.

The third phone call came as I was attempting to get a hyper 4 year old and a 2 year old out of the house to meet friends at a pool. The house had to be immaculate before we left because we were attempting to sell it and a realtor was going to show it any minute so I was in a hurry to get the house ready and go. Right as things were looking clean and put together enough so we could leave, the kids accidentally pulled a curtain rod out of the wall wrecking my ready house and my mood. The call was from the same genetic counselor who again thankfully skipped the small talk and told me that the amnio had revealed that this baby boy did have 2 copies of the DF508 mutation and did have Cystic Fibrosis. I would have chosen to skip the pool date, drag my pregnant self into my bed and start a movie for the kids, but they were so excited to go, and I didn’t think a sobbing pregnant woman curled up in a bedroom would be a big selling point for the realtor on the way. So we left the house after I screwed the curtain rod back into the wall, and called Frank on the way to the pool.

The fourth phone call came when I was walking through Target with all three kids shopping for their school Valentines. The person on the phone was my new OBGYN. I was taken off guard because it was so soon for the results to be back, it seemed like the other amnio results took much longer. He kindly told me that this baby had CF. I like the way the new guy did it the best. It was just really kind how he told me, and I was impressed that he did it himself and didn’t have someone else in the office do it. It felt like my baby was important enough to him to make the call himself, and I so appreciated it. There is few better motivators to not break down into tears when you have a handful of children surrounding you in Target. So we added a little extra chocolate to the cart, checked out, and walked to the car. On the walk to the car I wondered how long I could keep it a secret from Frank, just so he could not have to know for just a little bit longer. But I am a terrible secret keeper and he happened to call me on my cell as soon as I had buckled up in the Target parking lot anyhow. Earlier that week we had joked about starting to play the lottery if this baby ended up with CF, just for the impressive ability we had to beat the odds. So this time it made it easier to tell him. I said I had heard from the doctor about the amnio and that we should go ahead and buy a lottery ticket.

My kids always freak out when I cry and I didn’t want to talk to them about the new babies CF yet so I decided that I needed to suck it up, after all I knew this was a possibility and I needed to move forward. That worked pretty well for a few hours. I took the kids where they needed to go that afternoon and went to be with the young women that night from church as they made preparations for their color run that coming Saturday. Then I came home and went to bed. I never sleep well, but especially not when I am pregnant. At three in the morning I woke up and immediately thought of the baby having CF. I decided I wasn’t OK with sucking it up just yet. For a few days Frank and I did the some things that we thought would help us suck it up and move forward. Donuts were involved. I experienced a hair crisis and dyed my hair a wee bit darker than initially planned, etc (thank heavens I left my bangs alone).

Then I went into one of my favorite mental states - project planning. I knew I had to do something to really help myself to suck it up and move forward. I came up with an idea to have a family centered fundraiser. Each of us would sell something and we could throw in a bakesale or something to make it more of a draw. I felt like if anything, this fundraiser would give me something to do to move forward and feel like I was helping us to be more prepared for our current and upcoming CF needs.

Orson is obsessed with the old Star Wars movies and we have been having light saber fights at home so I thought he could have a table and sell his light sabers. Charles is consumed with taking things apart (old microwaves, CD players, flashlights, and anything else he is given permission to take apart) and has a large box of cool stuff he has found in his adventures that he always asks if he can make machines out of. He could make robots and sell them using his over flowing “take apart box” items. Maelee is always writing and drawing so I thought she would like to sell her work in the form of “Thank you,” and “happy birthday” cards. For myself to make, I immediately thought of these dolls I had made years ago when Maelee was little. I would make them for our new baby Ruby’s contribution to the fundraiser. Frank totally supported me in my idea and we thought of a day that we could do it on and started to work on it.

Then the meatball song effect happened. You know the song, the one about the meatball that gets sneezed out the door, rolls all across creation and then grows into a meatball tree? Well several friends began asking me what they could do to help me with the fundraiser and I was having trouble knowing what to say. Then 2 particular friends came to me together and said that they would like to help make my fundraiser into a larger event and they had a plan of how to do it. They gathered recruits and now there is this sweet army of friends and neighbors who are totally organized, smart, kind, generous, and making this happen way bigger than I ever could have on my own. So its official, the meatball is growing into a tree.

April 11, 2015. Cardon Park 2540 E. Fairview, Mesa, AZ. BBQ family diner, silent auction, raffle, treat table, cotton candy, popcorn, snow cones, bounce houses, entertainment, dance floor, furniture sale, CF Is Not Forever t-shirts, our family will still be having their table of items for sale, and so much more will be happening at the event! We are in awe at the love, kindness, work, and generosity that is being extended to our family in our efforts to manage CF x 3. April 11, 2015 will be EPIC!  

        

 

 

 

 

 

 

TOBI Came Camping

I married into a camping family. This family of my husbands is a true blue traditional method camping kind of family. Tents only, "go see a man about a horse" (a.k.a take a long enough walk away from camp that no one will see you drop your drawers) when you had to go to the bathroom kind of family.

 

Camping for me was more of a foreign experience not doing it really ever. I remember going as a newly married couple with his parents and siblings for the first time to camp and get wood. I then witnessed for the first time the true grit of my mother in law, who as petite of a woman as she is, can swing an axe with the furry of a seasoned lumberjack or lumberjill I guess.

 

I didn't want them to think I was a too-good-for-dirt-city girl, but was honestly terrified to take our baby girl camping. Camping was one of the things on my mental list that sent me into the germaphobe fetal position.

 

She was too little to go camping anyway her first summer, and I can't remember how but I dogged the camping bullet her second summer too. Her third summer though we had no reason not to go besides TOBI (a specialty antibiotic to combat pseudomonas). My husband was so bummed that we had missed those past camping summer trips that we were determined not to let TOBI stop us from going again. 

 

I tried to be as best prepared as I could. Lots of extra towels and paper towels for drying the cup after she used it, a special cooler set aside to carry the refrigerated medicine, books to read in the car while she sat through the treatment twice a day for 25 minutes, several containers of soap, a special new pot to sanitize the equipment in after each use, and Frank found the converter we needed to run the nebulizer.

 

What we were not prepared for however on that camping trip was TOBI being the least of our worries. We hadn't taken into account that our 2 year old, while doing fabulously well using the toilet at home, had never attempted to go to the bathroom in the woods. It turns out that it is terrifying for a 2 year old to poop in the woods. Her fear and trepidation quickly stopped her from even trying and that curly haired 2 year old went through all 20 pairs of underwear I had packed for her (literally 20 pairs, one of the ways I compensated for my camping germ fear was to bring all the clothes she owned with us JUST in case) and I spent my time hand washing her princess undies while Frank held them over the fire with a stick to dry them.

 

Although a pretty terrible experience then, it is one of our favorite memories now to think of Frank waving the little underwear over the fire to dry them on a stick. Its good to know that even though TOBI came with us it didn't ruin the trip and Maelee was just a regular 2 year old on a camping trip. We also proved to ourselves as husband and wife that if we can tag team through poopy undies and sanitizing neb cups we can be a camping family after all.

 

 

 

 

Children of God

Maelee didn't get to the NICU until pretty late into the evening. After the drama of getting her hooked up to IV's and machines and nestling her into an incubator the nurse on shift recommended that we go home and come back the next day. I hadn't been home since I checked in for delivery and was at the height of exhaustion. We never planned on leaving the hospital without our baby though and didn't feel good about it. We didn't have our room in the hospital anymore so my husband and I figured our only choice was to go home.

As we walked further away from her the feelings of fear and desperation became stronger. In the elevator we were alone and Frank said a prayer that she would be OK and protected until we got back to her in a few hours.

When he finished praying and as we walked to the car close to midnight our fear was replaced with a very specific assurance. The impression came to our mind that even though our daughter was tiny and new her spirit was mighty and strong. We knew she would be OK, not because we were protecting her, but because Heavenly Father had created our daughter and knew what she was capable of and would help her to do it.

We showered at home and tried to sleep but decided to go back as the sun rose and we would not leave again until she came home with us. We figured we could take turns sitting by her and there had to be a couch or a bench or something somewhere that the other could rest on in the hospital and we would do that until we were forced not to, or she got to come home.

We were able to get a family NICU nesting room with a bed in it to take turns sleeping in. They had a pre-designated room for mother's who wanted to pump while their babies couldn't nurse. It was a huge blessing to get to stay with her in those first few days of her life and not have to just visit her.

As Frank and I sat by her we were amongst several other babies all nestled into their necessary machines and incubators. We quickly realized that Maelee was likely the best off health wise among all the babies we were sitting by.

The feeling in the NICU was one of tangible reverence. The nurses there walked among these babies helping them and responding to all their needs literally like angels. One night, the 4th of July I had an extra special night with Maelee.

The new nurse came on shift, and saw me sitting by Maelee reading to her. I wanted to hold her but since I couldn't I figured if I read to her at least she would be hearing something besides beeping machines. The nurse watched me for a while then took action. She noticed my ankles were swelling and brought me something to rest my feet on. She found me a rocking chair and brought it right in next to Maelee's crib. She asked if I wanted to hold her then carefully got Maelee out without messing up the cords and placed her carefully in my arms. It was so incredibly kind I was overwhelmed.

So I got to sit there in that very special room with all of these spectacular little babies surrounding me and I got to hold my own. The Spirit was strong and it is a night and nurse I will never forget as I was surrounded by these children of God.

Meal Ticket Pre-Pay Available now!

 



 

High fat, I've been practicing for years!

People with Cystic Fibrosis have a very different nutritional goal than someone who does not have CF. Clearly a balanced diet is important for everyone's body and certain vitamins and essential nutrients remain essential, but the body of someone with CF experiences malabsorbtion at a very high rate. Because of this a CF person's nutritional goal is high fat and high protein. They need meals and snacks with a calorie PUNCH. Maelee loves whole milk. We buy half & half to add to her whole milk to give her the calorie punch she needs. Orson is our vegetable man so I always make sure he has ranch dressing or sour cream to eat his veggies with. When the kids were little enough (now I can't get away with it) to not notice I would add oil to their orange juice in the morning to give them a little calorie punch. We know other parents with CF teenagers who have super active kids and are participating in sports to benefit their lung function who have to consumer 10,000 calories a day to keep their body at a healthy weight.

This all being said my kids came to the right place! I love to bake and now can just skip the margarine and applesauce low fat replacement recipes and go straight for the cream cheese extra's and caramel sauce. Clearly I cannot consume the amount of these treats that I hope my kids do (sometimes I do though, woops) but the point is I have had kitchen role-models to follow that have showed me how to make some awesome stuff. So the answer we give is "YES! You absolutely can have a second slice of cake! Good job buddy!"

------Side note of further enzyme explanation-----------

A CF pancreas is blocked from releasing natural enzymes by their thick CF mucus so they take prescription enzymes to aid in more of a normal digestion process. Still though the enzymes they take when they eat do not make up 100% for the bodies lack of natural enzyme release.

The amount of enzymes a CF person needs is calculated by their age, weight, and other growth factors combined with any malabsorbtion symptoms they are experiencing (pain, BM issues, etc). Adults with CF can even get to a point that they "max out" with the amount of enzymes they need compared to how many is safe for them to take.

So even though a CF person takes enzymes their stomach is often sore and hurting. Knowing that their digestive process would never be 100% comfortable I am exceptionally sensitive to when the kids say their stomachs are bothering them. The kids talk about their stomachs hurting often. I hate it because I can't see it to fix it. It's not a skinned knee or a sore ear, I can't get an antibiotic for it - it just hurts because that is how their body feels even when it is doing its best to function.