Hostage

The delay in posting is due to a hostage crisis in our home. You see, my business is holding me hostage in our office until I complete a crazy amount of orders and prepare for the first show of the fall season. Thankfully, I am only committed to a couple of shows and then I will concentrate on the stores and personal orders…oh, and I can give 100% to my REAL full time job of being Ellie’s mommy and Brandon’s wife!

So, I’ll start with our trip to Texas Children’s Hospital last week to visit Dr. S, Ellie’s new pulmonologist. She is the clinic chief for the pulmonary clinic at TCH and has been on staff there for 23 years. The clinic takes every precaution to keep all people with CF safe (over 300 pediatric CF patients) by asking us to “mask up” while we are in the hospital. Ellie LOVED wearing her Mickey Mouse mask and I think she thought it was pretty cool that mommy had to wear one as well. She was a super trooper through the chest x-rays, double gag sputum culture and “interrogation” by five members of the CF team. I was very proud of her! The doctor did mention a spot in Ellie’s left lung that is cause for concern. It was a very cloudy spot that was about the size of a quarter. Because Ellie has been having some sinus like issues (coughing, sneezing) combined with the suspicious spot in her lung they want to watch her very closely…which means we go back for clinic every 4 weeks until otherwise noted. I made Ellie a very cute goodie bag for our clinic trips, but to be honest we were busy the entire 3 ½ hours we were there and she didn’t even get a chance to play with any of it. I decided to keep it all a secret and I’ll just bring it to our visit in September and surprise her.


The most comedic part of the whole visit was Ellie’s conversation with the dietician. It went something like this:
Dietician: Hi, Ellie! What do you eat for breakfast?
E: Ummm, macaroni
Me: NO YOU DON’T!
Dietician: Oh, you eat macaroni for breakfast
E: Yes!!!
Me: Ellie, you don’t eat macaroni for breakfast. You eat egg beaters with fat free hog doggies and cheese.
E: Eww, yuck, splaf!
Me: (rolling my eyes and getting a little embarrassed) She eats the same thing almost every morning: Eggs with hot dogs and cheese, sometimes she has waffles and rarely she eats cereal.
Dietician: Okay Ellie what do you drink with breakfast
E: strawberry juice
Me: WHAT?!?!?! You have never had strawberry juice in your life
Dietician: (acting like she was actually believing my toddler that was making up meals by the minute) Mom, does she drink strawberry juice with meals?
Me: No, she usually drinks milk or water. I buy Motts for Tots Apple juice, but not regularly.
Dietician: Ellie, what do you eat for lunch?
E: macaroni and cheese and strawberry juice
Me: (about ready to die of embarrassment b/c I do actually cook almost every meal for my child and they are usually very healthy) Okay, she does eat a lot of macaroni and cheese…but, NEVER strawberry juice!
Dietician: Ellie what do you eat for dinner?

I’ll let you guess what she said! Apparently, Kraft Macaroni and cheese (yes, people ~ the blue box is the best) has left a huge impression on my baby girl!

After we got through hearing the toddler’s version of her daily diet I set the record straight and we moved forward. She did say that we need to make sure and add salt to all of Ellie’s food, which isn’t a problem b/c she typically adds salt and “sneeze” to ALL of her food by herself! I mentioned Ellie’s love for pickles and all other salty foods and they said that most of their CF patients prefer salty over sweet…interesting. I have never liked sweets, but give me a bag of chips any day! I wonder if any other CF’ers are like that???

We decided that because Ellie was such a big girl and she needs to increase her salt intake…we would buy her a surprise. Ellie’s favorite thing to snack on is popcorn. She LOVES to eat popcorn for some reason. So, we bought our very own counter top popcorn maker and it has been a HUGE hit (aside from the fact that B hates the smell of popped popcorn)! We are averaging about two batches of popcorn per day! Fun times!!!

Not only am I being held hostage by my home office, but I am also being held hostage by my body!!! We were thinking that we would have started our IVF meds by Monday at the latest…we are still waiting! I hate this body of mine! You can’t count on it to ever cooperate and it does everything on its own time…which is never on time or at the same time. So, while I work…I wait…impatiently! However, I remind myself that this life’s blessings are a gift only God knows and they are not on my time. Through this journey I have loved this scripture…it is my reminder that He can hear my prayers and in His own way we will be blessed.

I waited patiently for the LORD; he turned to me and heard my cry.
Psalms 40:1

I also want to let all of our friends and family know that we were invited to attend The Women’s Hospital Labor of Love luncheon on Saturday to honor Team Chunky Monkey being one of Houston’s top family teams in the March of Dimes 2009! Coincidently, it is also the show that I have a booth at. For the past few years we have had a booth there, but never have we been invited to attend the style show and luncheon. It is a huge honor to be included this year and we owe it all to you for your support. We will be start fundraising again in a few months and we would be honored to have you support our team again.

Blessings,
Angie

Here is an interesting article about CF and infertility.

What's up, Doc???

What’s up, Doc?

I am going to rewind 2 weeks before I update you on the latest Ellie info.

Brandon and I decided to take Ellie on a vacation to Sea World for the weekend. We are typically very protective of Ellie and don’t purposely expose her to places like Sea World…except, let’s face it ~ she is a kid and she needs to have fun like that every once in a while. So, along with my best friend and her two kiddos we embarked upon a fun filled weekend of roller coasters, popcorn, frozen lemonade, cesspools…I mean swimming pools, hotel rooms and water parks. We were like normal parents…laid back and relaxed as our baby girl danced on the dance floor to the DJ and ran wild with Shamu and his buddies. While we were there I noticed that Ellie was sneezing more often. Yes, I am so anal that I actually count how many times she sneezes in a day b/c it could be a “sign” that she is getting sick. Ellie’s immature immune system caused by prematurity was our usual suspect when she got sick. In the car on the way home I gave her Tylenol and finally she fell asleep. Monday she was still running a low grade fever, but the coughing and sneezing had increased in frequency. By Tuesday morning, she had her finger in her right ear and she was telling me that it was hurting her. UGH!!! All I could think of was this post and how fast we went down hill! So, to the doctor we went. Sure enough my little m.d diagnosed herself with a nasty ear infection in the right ear. We got our prescription for 10 days worth of amoxicillin (liquid candy) and we headed home. Seven days later we were out of meds. Ellie’s chest congestion had gotten progressively worse, so we started her on nasohist DM which is a Rx strength Triaminic. In the last week we have seen some relief in symptoms until yesterday. Ellie spent a lot of her day coughing…and I mean really coughing…to the point that I did CPT on her three times.

Following Ellie’s “diagnosis” by DNA on Tuesday that she is a carrier of both mutations: r117h and ps686y I made it my mission to get her into the CF clinic at TCH asap…that’s a lot of acronyms in one sentence!

So, anyway last week I spent several days (and hours) trying to get in contact with the Pulmonology department at TCH. On Thursday, I received a call from the nurse in the pediatric CF clinic at Texas Children’s Hospital. She wanted to know “a little” more about our situation…I don’t think she knew what she was getting herself into! She was so sweet and patient with me, but our story is unlike most and it is LONG! So, after several, “Oh’s” and “Oh my’s” and “you poor thing’s” I think I had gotten the gist of our medical history across to her. She said that because Ellie was sick and had been for over a week they felt like they needed to work quickly to get her in. She did mention that they were very busy and that she would call either Friday or Monday with an appt.

Which brings me to today! Our nurse called today and set up a sweat test for next Monday at TCH. Following the sweat test we would have a clinic visit with the chief of the pulmonology department and get some x-rays and other testing out of the way. I HAPPENED to ask her if it would be okay for Ellie to continue her Nasohist DM and she seemed perturbed that Ellie was still on meds. She said she would feel more confident talking to the doctor and then calling me back. After only 10 minutes she called back with the pseudo plan. The doctor was concerned that Ellie has been on meds for so long and felt like her symptoms were clinical signs of an infection that needed to be treated and her feeling was that Ellie may need to be admitted for what they call a “tune up.”

HOLD THE PHONE….TUNE UP….FOR MY BABY THAT WAS JUST DIAGNOSED WITH CF…WHAT THE H*LL???

I told her to have the doctor call me as soon as possible. I would feel more comfortable explaining right to the boss exactly what symptoms Ellie was experiencing and how I really felt she could hold out until next Monday to be seen by him.

So, today in the midst of working my rear off for a huge order (60 bows and headbands mixed by 8am tomorrow) I waited very patiently NOT freaking out that they wanted to admit Ellie into the hospital for her very first CF stay. Well, and I actually texted Somer RIGHT away b/c I knew she would help calm me!

At 6:15pm tonight my phone rang and it was Ellie’s CF doctor…the ACTUAL doctor really called our house! AWESOME!!!

Anyway, after about 30 minutes of me explaining the history and recent symptoms Ellie has been experiencing she felt like rather than admitting her she would squeeze her in on Wednesday morning and do a bunch of tests. WOW! Special treatment…which I know isn’t always good, but in this case it was a total relief. I assumed this whole time they would perform a sweat test, but because Ellie’s mutations were detected through DNA they don’t feel the need to run it. We might anyway only because am curious to know what range she would fall in. More importantly they want to run x-rays on her lungs, take a rectal sample (eeekkk ~ poor baby) and make sure if she does need an antibiotic she gets the right one. You see, the amoxicillin they gave her two weeks ago that I TOLD the doctor hadn’t worked actually didn’t work. The doctor explained that a lot of CF bugs are resistant to amoxil…so, it would make sense that she hasn’t gotten any better since completing the antibiotics.

So, tomorrow we are off to the pedi to check the ears and Wednesday we are off to TCH for a day of fun in the pulmonology department! Oh, and I’m pretty sure by Friday we will be visiting the fertility clinic for ultrasounds and blood work so we can start meds. Really, we just like to pay co-pays!!! KIDDING!!!

Please keep my precious little angel in your prayers and close to your hearts on Wednesday. She doesn’t really get any of this and we all know that the doctor is the last place any baby wants to go to. I am going to put a goody bag together for her for all of our CF clinic trips, so any FUN IDEAS from you cystas, fibros or parents of CFers would be greatly appreciated! I hate the fact that we have this disease, but I love all of you wonderful people that have blessed our lives because of it.

Blessings,
Angie

This beautiful face...

This beautiful face...

This is the beautiful face of my baby girl. The light of my life, the life in my breath and the reason I know that tomorrow will be even better than today. Oh, and the one that tells me daily I am HER best friend. She is the one that makes my life the true blessing it is. So, imagine my heartbreak today when we found out she HAS cystic fibrosis.

Silence…then calmness…then uncontrollable tears…and then the fear. What have I done to my babies? I can’t help but feel responsible in some way. As irrational as that sounds…it truly is a battle in my mind. CF…really??? Dealing with me having this disease is one thing. My baby girl having to live with it and battle it is another.

I got off of the phone with our genetic counselor…who is really not just our GC, but has become a good friend and the first thing I did was call B. I was devastated and I couldn’t imagine waiting for him to get home to tell him…and I just needed to hear his voice at that moment. The best thing about my husband is that I know we were truly meant to walk this journey together. The hills and the valleys and every step in between…together. Today was no different.

After I talked to B I decided to call one of my cystas because I knew she would help calm my fears and she would also be able to answer some questions I had. Questions about keeping us both healthy together and about what level of “normal” is really safe for her. I am already a paranoid germ freak, so can you only imagine the thoughts that raced through my head…I was thinking “bubble boy” here people!!! All jokes aside, I called Somer because in my mind she is a guru on CF. I was a crying mess when we started talking and as we hung up I had a feeling of content. I would have probably raised Ellie with the same guarded parenting with or without CF. When you bury one child I think you instinctively try to over protect the others. Now, I have a real reason to be so terribly anal…so, don’t expect to come to our house without hand washing and sanitizing at the front door ever again!

Today my journey has been filled with trying to get Ellie into the pediatric CF guru at Texas Children’s Hospital. Why do they make appointments so hard for parents to make? Call this number, fax this paper, call your doctor, send this info…on and on. All I want to do is get my baby seen and figure out what course of action we will have to take to give her a full healthy life. Can you sense the frustration?


While we wait to have Ellie seen at TCH we will have another circus to live…IVF.

Yes, despite the heartbreaking diagnosis of Ellie’s CF, we are still going through with the IVF with PGD. I can’t explain why I feel so calm about this decision…I can only say that God has given me peace about this whole battle with infertility. If it works we will have a baby that has a little bit better than a 98% chance to be perfectly healthy and if it doesn’t work…well, we have the most precious, beautiful, gifted, little miracle of a baby girl to raise.

I am sure the sky will fall again…it just seems to be our luck. However, in the meantime I am just going to live. Maybe it’s naïve or maybe I have been so very blessed to have the gift of “hearing” God’s will for my life, but I don’t feel broken by this...I won't feel broken by this!

My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)

Thank you for continuing your prayers for our family. This journey has definitely strengthened my faith. However, knowing that we have so many friends out there thinking about us, praying for us and keeping us close to your hearts is a huge source for our strength. We thank you and beg you to continue to lift our family up in prayer.

Blessings,
Angie

A celebration of life

I have been out of the loop for the last week and just today read a comment for a prayer request I received.

When the twins were born, Brandon and I received one of the most sincere cards with a letter from a parent of a precious little girl that happened to be in 2nd grade when I taught it at LVE. From that moment in our lives and through the next year that “mother of a child” became a friend of mine. She always remembered our family on anniversary days or holidays. She would visit our precious little prince and leave balloons and flowers, but most importantly she always held our family close to her heart and in her prayers because she knows the heartbreak of losing children. My friend is my inspiration. I have told her on numerous occasions that her words are what calm my mind when I think this tragedy will just consume me. She is faithful, kind, selfless and compassionate. She has been a true blessing to Brandon and me.

A few weeks ago she sent me an email. It was about her sister’s niece. She was in a very tragic accident on her way to youth camp, was thrown from the bus and trapped under it. I kept Maggie Lee and her family in my prayers and then this morning I read the comment and linked to her caring bridge site to read her parents journal. She spent the last few weeks in a coma fighting courageously for her life and on Sunday evening she was carried to her eternal home in the arms of our Lord.

Please keep this faithful family in your prayers as they celebrate the life of Maggie Lee today at 1pm. Please pray for the strength of John, Jinny and Jack as they are grieving this most unfathomable loss.

Blessed are those who mourn, for they will be comforted.
Matthew 5:4

Blessings,
Angie