Thankful for insurance

I am very thankful that we have insurance. Sarah was put on two different antibiotics due to the Pseudomonas. With our insurance the oral one would have been $240 for 28days and the inhaled one would have cost us $6041.59.

Yes you read that right. Over $6,000 for a single antibiotic for 28days. Crazy

Pseudomonas :(

This morning I went up to the CF Clinic to learn some infant massage for Sarah in the hopes of helping her calm for some of her CPT treatments. While I was there Sarah's nurse stopped in to talk to me. I need to ask her some questions anyways. Sarah's vest got here on Friday and I wanted to find out when we would be able to start using it. I got the OK to use it. Sarah seems to really like it. Then I go the bad news, Sarah's latest throat cultures were not good.  Sarah cultured positive for Pseudomonas this time.

 Oh NO.

I know this is a common occurrence in CF patients, but it's not really something you want to hear that a culture came back positive for.  They have the potential to cause a lot of problems, and they can be hard to treat.  But there are meds that can treat it, and how long she will need to be on them depends on how well she responds to them. She will be on one oral and one inhaled antibiotic. Good news is that she already has the nebulizer so we can get started as soon as Walgreens can fill the scripts. Sarah will be on a 28 day supply of TOBI (Tobramycin Inhalation Solution, USP). After the 28 day cycle, she'll need to have another throat culture - if she tests negative, we can stop treatments, but if she tests positive we'll have to do another 28 day cycle and will keep repeating the process until she cultures negative.  Hopefully she'll culture negative in a cycle or 2.

Here is a video of her with the vest on the first time she tried it. I don't think she knew what to think.

Feeding Issues

So I have noticed for a bit that Sarah has shown some issues with eating. She has trouble swalling anything but purees. This is not good since she will be 1 in 4weeks.
Wait... 4 weeks... Yes that is correct.
The CF clinic called in a referral and we know have a speech therapist coming out to the house to work with her. She will be coming out 2x a week. I really hope that she will be able to help. The biggest concern is that we will drop formula at her first birthday and if she isn't eating enough table foods then the milk wouldn't be enough for Sarah to maintain or gain weight. This is a big concern for the the CF team.

Another note. I got a call from the vest company and Sarah's vest is in the Mail. It should be here Friday.

CF Clinic #4

So today was Sarah's fourth visit to the CF clinic and it went really well. Sarah has had a cough that seemed to be getting worse over the past two weeks and then over the weekend she had coughed up some blood. I was really worried what they would say. They are putting her on and Antibiotic for the next ten days. The dr told me if her cultures showed anything bad they would let me know and maybe call in something else but they weren't concerned with the little bit of blood.

They did wish she would have gained more weight, but they said they are just keeping an eye on it. She was 17lbs even today and will be 11months old on Monday.

Sarah will also be getting an airway clearance vest. This will help her get the mucus out. Right now Jason and I do this by hand. It will be a lifesaver when she can use this. We can plug it in and it will do the work for her/us.  Below is a picture of what it will look like. They clinic said they would order a Pink one for her, so I hope that is what she gets. :)

Picture is from the SmartVest website

GI Update and Dance Pictures

Today I took Sarah in for her GI appointment and things are finally looking really good. We increased the dose of her enzymes but everything else was great. She is now 17lbs 2oz and in the 6%.

Also Brooke had her dance recital pictures done today. Here is a quick snap shot I took with my cell.

Loving my Girls

God chose me

It has been almost 4 months since we found out Sarah has Cystic Fibrosis and It really hasn't been the easiest road for me. I find myself wondering why did this happen to my child? Then I have to remember that Sarah is not my child, but Gods. 

Sarah is a gift from God. She is not merely a vehicle for Cystic Fibrosis; she is a child who happens to be afflicted by CF. Sarah is gracious gift. ALL of Sarah. She does not 'belong' to us; she 'belongs' to the Lord. God is the one who gave her life. 

Shortly after the diagnosis a dear friend told me...

"God chose you to be Sarah's mother because He knew that you would be perfect for the job."

Perfect for the job? I fell totally inadequate. But when I own this as a gift in which God has prepared me, I can be thankful.

Yes.  Thankful.  I am thankful to be Sarah's mother.  I was chosen. I am so blessed.

In hard times, it's easy to feel pity for yourself.  And, believe me, I have had many moments of deep sadness over this diagnosis.

I find myself asking "God, why did this happen to me?"


That is the question, when I contemplate the years of treatments, medication and hospital visits that Sarah's life will entail, that burns a hole in my heart. I don't want my daughter's life to be full of suffering. I do not want to outlive my own child.

However, instead of spending my time wondering why my child had to be the one who got Cystic Fibrosis, I can mediate on the fact that Sarah is a blessing given to me because I was, in fact, chosen for this job. I was chosen to be her mom.

I will continue to ask why. Yet, in the midst of the asking, I will choose to thank God for His gracious gift, for the privilege to care for our little blessed one.