Please help my children breathe!

Blessings... What you give... What you receive...

2007-03-03T14:48:00.000-05:00

We had quite an exciting and busy week this past week. First things first though!

Madison is doing exceptionally well health wise. Thank you Lord!!! She has gone an entire month without a trip to the pediatrician or any medication except for one nightly maintenance med. Katie is still trying to get through the UR/Sinus infection she has. I don't think 70 days of antibiotics has helped her at all.

I did learn about two very interesting things recently though that I think are worth researching more. First ~~~

We have an ionic air purifier that we've run in our home since before we first brought Madison home from the hospital. I found some information about specific types of those machines that are detrimental to a homes air environment. They actually create and build up toxic levels of ozone in the house. Anyone with any sort of respiratory issues, even a common cold cough, can be severely affected by the use of the machine. LIGHTBULB MOMENT!!! I turned that machine off and within two days saw an enormous change in the girls' breathing when they were in the house. We have not turned it back on.

Second~~~

My sister gave me some information about salt lamps. Apparently they are supposed to be all natural dust, dander, etc... repellants and are supposed to be very beneficial for people with any kind of breathing issues. I'm doing some more reading about them to see what I can find, but strangely enough shortly after my sister told me about them, a booth was set up at our mall selling the things. They are very strange looking, but at least I have easy access to buying one if I decide to get one and try it.

For our big, exciting news this week... We won our medical wish being granted from the fund at www.robinhoodfund.com. What a huge blessing!!! We were very overwhelmed by it all and are looking forward to paying off a good bit of medical and pharmacy bills.

I had my last day at TDC last Thursday. It was a really emotional day for me. I miss my friends a lot, but I am excited, on the other hand, that I will now be home full-time during the day with my girls. I started training at my new job on Monday and I am very overwhelmed by the new system and procedures. It is incredibly foreign! I know I'll be OK once I get the hang of it all but I feel mentally like I've had the speed version of learning a foreign language and now I have to speak it.

Guess that's it for now. We are waiting for my new insurance cards to arrive so we can get Katie's CT scan done and have the results evaluated. I am praying that everything will be clear. I'll post again after we get the test results.

Valentine's Day

2007-02-14T20:35:00.000-05:00

Well, same song, second verse, or maybe third, or maybe fifty-second...

Joel spent the morning at the pedi's office with Katie. She has another upper respiratory/sinus infection and we came home with more meds. I feel like I want to run out in my back yard and just scream up at Heaven, "Why?, What else are we supposed to do? What more is there?"

My mom talked with someone about the girls symptoms and they gave her an answer none of the doctor's we've seen has ever mentioned. I am hopeful about the news and am going to call our pedi in the morning to suggest further consideration of it.

I have decided to resign from my job at TDC so that I can go back to a night shift pharmacy position that will allow me to stay home full-time during the day with the girls instead of keeping them in child-care. I believe having them in child-care all the time constantly exposes them to things that keep their health at risk. I am excited about my new job, but am trying really hard to figure out how to function on a few hours of sleep a night. We'll see... I'm sure it will work out.

Madison is doing really well. She had her first public dance performance this past weekend and was very excited to dance with the Apache Belles. She did a great job and is already asking about their next performance. She is growing up so quickly that some days I just want to hit the "pause" button and hold on to her. I know I can't do that though. She is a delight to me and often surprises me with her imagination and sense of humor. I am so blessed.

Guess that's it for today. Being Valentine's Day, I should spend some time with my Valentine.

Monday, Monday...

2007-02-12T10:00:00.000-05:00

I took the girls to visit my parents this weekend. We enjoyed our time away for a few days. Katie has now been on her new medication for about two weeks and I'm not sure I am seeing any change. The last run of antibiotics was 24 days long and as soon as she stopped taking them, her infection began to appear again. I think all I have left to hold on to is my faith. I know that there is a purpose in all of this, although I can't seem to figure out what it is. Maybe it's a test for me. Maybe it's a test to see if I will stop trying to hold on to control and let the Creator of my children handle things.

I took the girls to church with my mom and brother on Sunday and had them prayed for. It was a comfort for me and I feel more at peace about it all, but am still looking for a miracle.

Madison is doing well. She enjoyed getting to have her first public dance performance this weekend. She did really well. We only had to do one breathing treatment the entire day. That in itself is a miracle for her.

I am ready for some consistently sunny days and warmer temperatures. We need lots of days in a row for playing outside. I'm beginning to feel my own cabin fever.

Great Friday

2007-01-26T21:35:00.000-05:00

We finally had some sunshine yesterday and today. It was great. It was a little warm, just enough for the girls to be outside for a bit.

We saw a new Dr. today, looking for a second opinion. We heard some refreshing insights and options and are hopeful about what we learned. We will know in a few weeks if the new treatment plan is working.

A week and a half stuck in the cabin...

2007-01-21T17:03:00.000-05:00

We are a week and a half into an active infection for Katie and are struggling. One day she seems to be getting better, the next she's worse again. Her little system is so full of steroids right now that she's eating everything she can get her hands on. She's on day 7 of antibiotics and the rash and blistered hiney she's living with as a result are horrible. She cries every time we change her or put her in the bath. We have another 3 days of antibiotics and 1 more day (out of 5) of steroids. I am so SICK OF THIS!!!

Joel and I had a long talk yesterday and I just feel so down. We can't seem to get ahead at all... physically (so sleep deprived), emotionally, financially... we are just feeling like we're sitting on the bottom most spot of the "bottom". Don't know if that makes sense, but that's how we feel. I want to stay home full-time so I can take care of the girls. But, if I do that we will lose our current medical benefits. It's a catch 22. I'm not sure what the right thing is to do in this situation. If I keep staying home because the girls are sick I'll lose my job anyway.

It's about time for a breathing treatment so I should close this for now. The girls just got up from their naps and I need some snuggles. It's actually sunny and warm outside today so we might let them wander around the back yard for a bit just to get out of the house.

My Heart

2007-01-21T16:41:00.000-05:00

My heart's desire is to provide the best that I can for my family. Even though both my husband and I work full-time, in 2005 alone, we had over $10K out of pocket expenses for copays, deductibles, medications and surgeries. We are sitting on the edge of a huge financial struggle because of all of the medical bills we've incurred for the girls.

If you know of any grant/gift programs that families can apply for or go to to request help, please e-mail us at www.weneedtobreathe@yahoo.com

My Hope

2007-01-21T16:32:00.000-05:00

All I am searching for is an answer for my children. What, exactly, is going on? Some doctors have told us they both have asthma. The next doctor disagrees and tells us it's allergies. Yet another doctor has another theory.

I want to find a pediatric pulmonary specialist who will take time to review all of Madison and Katie's medical records, tests, etc., and give us some REAL understanding and insight into what is going on and how to treat it as consistently and proactively as possible.

I love my children very much and I feel like it's time for them to be able to start living like normal 2 and 4 year old girls should live.

Daily Living - What's Normal for Us

2007-01-21T16:13:00.000-05:00

During an active infection we live by a cooking timer that is on our refrigerator. As soon as the girls wake up we do a nebulizer breathing treatment with Xopenex (levalbuterol) solution, take oral steroids and antibiotics. The timer is set to beep every four hours so that we know exactly when to do the next breathing treatment. We cannot get through the day without these treatments. All of the girls activities are limited... where they can go, who they can be around, no hard running, no exposure to crowds. We basically live "locked up". Madison and Katie become the Cabin Fever Kids. It's hard to explain to the girls why they can't do all the same activities as the neighbor kids or friends from school, but they are learning that if they "lie low" during the really bad days their recovery time will be shorter. We live for the weather reports on the nightly news because we've learned what kind of day the girls will typically have based on whether it will be cold/warm/rainy/sunny.

We pay attention to all sniffles, sneezes and coughing. Every "cold" sound is suspect.

During "good" days when we aren't fighting an outright infection, we give the girls daily maintenance medications and keep inhalers with us at all times. It's a great day when we realize the only medicine given that day was the one bedtime maintenance med. That doesn't happen too often.

Katie

2007-01-21T16:02:00.000-05:00

We were very blessed and surprised, to learn during Mother's Day weekend, 2004, that we were expecting another baby. This time around the months of my pregnancy flew by, filled with work, Dr. appointments for myself and Madison, and preparing for another baby to join the household. I never gave any thought to the possibility that we might face another journey like the one we had been taking with Madison. Call it denial, being naive, whatever... I never considered that our baby might have the same health issues as her older sister.

Katie joined us eighteen days before her due date. She was able to eat normally and seemed to be doing very well at first. About a day after her birth, my husband and I began seeing and hearing every textbook symptom we now knew represented GERD. We questioned the neonatal specialist at the hospital but were told it was too early to tell. We knew in our hearts, that we were living through it again. Katie's GERD was actually much more severe than Madison's had been. Following her Upper GI test, the Dr's definition to me was that it was "significant" and we needed to begin medications to treat her immediately.

Shortly after we received the GERD diagnosis, Katie began to fight her first upper respiratory infection. "Same song, second verse..." Here we are, having just celebrated her second birthday and still have no answers. Katie herself has gone through blood tests, Cystic Fibrosis tests, X-rays, ear tubes and surgeries. We are no closer to understanding what is causing the illness and we were when we began this four years ago.

Our Story

2007-01-21T15:16:00.000-05:00

I am a daughter, sister, wife, mommy, school teacher and pharmacy technician. There are many roles in my life, but none more important to me than that of mommy. The journey my husband and I took to even have the opportunity to hear that word called out in our house was long, at times very disappointing and sometimes full of pain, in more way than one.

We tried for two years, without success, to have a baby. Tests, surgeries, medications and Dr. appointments became the routine for us, not the exception. Finally, on Mother's Day weekend, 2002, we learned we were expecting our first baby. The timing (Mother's Day) could not have been more appropriate to us. The next few months held a lot of up days - emotionally - and a lot of down days, sometimes full of fear. Around the beginning of my 3rd month of pregnancy I began to have complications and was put on complete bed rest to avoid losing my daughter. My bed rest ended seven months later with the early birth of my beautiful little girl, Madison. In technical medical terms she was not considered premature, but she arrived under emergency circumstances nineteen days early. I felt like I was holding the greatest gift ever. I had no idea what we were about to endure.

MADISON

Almost immediately we realized that Madison could not eat normally. Her mouth was so tiny that for several weeks we had to feed her using a syringe, a few drops of milk at a time. We also learned that she could not keep the food in her stomach once we fed her. The "trap door" that sits between the stomach and the esophagus was immature and could not stay where it was supposed to, causing her to suffer with severe GERD. We had to begin giving her first routine medication. Every meal had to be timed around a medicine schedule. She was only six weeks old. Shortly after Madison's Upper GI test confirmed that we were dealing with GERD, she started fighting her first severe upper respiratory infection. This would be just the first of many, many respiratory infections.

By Madison's first birthday, her pediatrician felt she had grown out of the GERD and we were able to stop the medications for that. We were incredibly excited. Now our focus turned to trying to find out why she could not heal completely from one respiratory infection before getting another one. The worst of infections for her came during Thanksgiving of 2005. Madison's lungs had become so "sticky" with infection that they actually collapsed. She spent four days in the hospital recovering. For us, it was terrifying to watch.

Living in the Houston area, in a city considered one of the best medical areas in the country, one would think the answer would be easy for us to find. Still, today, we don't have it. She has endured blood tests, Cystic Fibrosis tests, CAT scans, MRI scans, X-rays and surgeries. Yet, there is no improvement. No two doctors, no two specialists are in agreement about her diagnosis or her treatment. Four years down the road and we are still at a loss.

We have learned to always travel with an inhaler, either in the glove compartment, diaper bag or backpack. We carry nebulizer machines and inhalation meds with us every time we leave town. We know where every pediatric hospital/ER is located before we leave home so that we can get there quickly if we need to. This is our normal. This is our every day living.

My Mission and Purpose

2007-01-21T14:48:00.000-05:00

When I finally decided to set up this site, I had three primary reasons for doing so. First, and most importantly, I need help finding pediatric pulmonary specialists for both of my daughters. Second, I need a place where I can share what our experience is and has been and how it affects us on a daily basis. Third, I need help finding gift/grant money to help cover the many medical expenses that we have incurred.

My family is the most important gift I've been given and I am searching for a way to help my children receive an accurate diagnosis and consistent treatment plan so that they can function in normal daily life.