May Flowers - The Power of Fasting

Because Ian has recently been diagnosed with a rare disease, I have worried a lot about my little boy. He is so precious to me, and I want him to have the best life he can. He has Mastocytosis and we are waiting to meet with a Immunology Specialist in order to verify what type it is (click here for a post about Ian's condition).

Ian can get extremely fussy, and he doesn't sleep well. His disease can cause many types of symptoms so we figure this is why he just doesn't feel well and wants to be held constantly. I sure love to cuddle with Ian, but it prevents me from doing practically everything.

On May 4th, Broden and I decided to do a family fast. We contacted our family members and had them spread the word about the fast. We wanted to pray for Ian's health, his condition to improve, and that we can gave guidance on how to take care of our precious little boy.

This picture just makes me smile :)

And, our prayers were answered! Ian now only gets up 2-3 times a night instead of 6-8. There have even been a few nights where I only got up with him once!!! I know that the fasting and prayers helped Ian because it was May 4th when Ian started to sleep better. We also talked with Ian's doctor about giving him probiotics and the doctor said that it would be a great idea. So we have been giving him probiotics which have helped regulate his digestive system. Ian seems happier. He still has his problems and other symptoms, but I'm so grateful that he now sleeps better.

Plus, we were able to get an appointment into Primary Children's Hospital at end of this month!! This is another huge blessing since we were told it would be most likely between July and September. I'm so grateful for all the family members and friends who have prayed and fasted for Ian. I know that fasting helped my little boy.

And, here is a picture of Patrick playing in his cardboard house I made for him. He sure is getting bigger every day. Patrick loves books so you can usually catch him "reading" when he is playing by himself.

May Flowers - Flowers

My last post was about April Showers, and how life has been extremely hard especially with the news of my little boy, Ian, having a rare disease. I concluded my post by writing:

We are praying that these April showers will bring our family May flowers. We sure could use some flowers in our lives right now.

For at least the month of May, I'm going to write about the flowers in my life. I want to see the good in my life, and I know by doing this it will help me see how much God loves me.

On Saturday, the day before Mother's Day, I wasn't in the best mood for many reasons. I was cleaning the kitchen when I noticed a UPS truck pull up. I didn't know what it could be since we haven't purchased anything online. Then I noticed the box the UPS delivery man was carrying. It was a 1-800 Flowers box.

I can't even begin to tell you how excited I was to open the box and see these beautiful tulips inside. And, the message enclosed made me tear up: Hope You Have Many More May Flowers!

I don't know who sent these flowers, but I just want to tell you how much I am grateful for them! Thank you for thinking about me and sending some sunshine into my life.

And then later that same day, one of my best friends stopped by to drop off a vase of flowers. I was so touched by her kind act!

Now every time I enter my kitchen, I get to look at these flowers and be reminded about how I am loved and how May flowers do come!

April Showers Bring May Flowers

April was simply a horrible month for me. I went into April feeling like I was barely hanging onto my rope, and April just knocked me off and I hit what I feel like is rock bottom. Broden has been working tons of mandatory overtime so he is rarely home which leaves me to do the housework and yard work. I love doing yard work, but when that is all I'm doing on only a few hours of sleep then I get really burned out. Why am I only getting so little sleep? One word: Ian.

Which leads me into saying why April was such a horrible month. At Ian's 9 month wellness appointment, I asked about Ian's mole like spots. I kept having a feeling that I needed to talk with the doctor about it, and so I did. And that is when I got the news that no mom wants to hear: "Your baby has a rare disease." My heart has hurt for two weeks as I have tried to process the news that Ian has Mastocytosis and the possibility that he could get leukemia or sarcoma. It all makes sense now. It makes sense why Ian has been fussy, uncomfortable, clingy, sleeps very little (gets up every 1-2 hours during the night), and has poor digestive.

What is mastocytosis? Well, let me explain. Mastocytosis is when mast cells start to accumulate in the body's tissues. There are two types: 1) Cutaneous where the mast cells accumulate in the skin, and 2) Systemic where the mast cells accumulate in various tissues of the body. Cutaneous mastocytosis is the better one to have because systemic mastocytosis has more problems and can lead into cancer. Mast cells are part of the immune system and have histamine to regulate allergic reactions.

Ian has mast cells accumulating in his skin so he has lots of "spots" or lesions. When these spots get irritated, rubbed/scratched, the skin becomes red and the spots become like hives. If too many spots get irritated, then Ian can go into anaphylactic shock because all the mast cells mimic an allergic reaction even when no allergen is present. So we now carry an epi pen with us because we don't know when he could have trouble breathing. We don't know if the mast cells are accumulating in other tissues.

Symptoms vary with this disease but here are some: fatigue, nausea, abdominal discomfort/cramping, musculoskeletal pain, flushing, tachycardia, syncope, anaphylaxis, etc. I could go on for a while about this condition, but I feel that this sums it up without getting too technical.

Ian's blood work to check his liver, blood count, and serum tryptase levels came back normal. This is a good sign since it means that it is most likely cutaneous mastocytosis. However, we will still have to do more blood work and skin biopsy once we see an immunology specialist at Primary Children's hospital. We are currently on the cancellation list because it sounds like it might not be until sometime between July and September before we can get into to see the specialist.

So April has brought many showers into my life to the point that I can barely take one day at a time. I was barely doing each day before this news so I have to be honest and say how much I am struggling. I can barely make it through each day.

 I only am writing this post to let everyone know what is going on and so I don't hear "look at those spots" or "what is wrong with his skin". It cuts my heart every time I hear those words because it is a reminder of what my son has to go through. It is a reminder that he is getting more spots each day. It is a reminder that my time with Ian might not be as long as I want it to be. And this is a reminder for everyone to think before you speak and to be considerate.

And so the only thing I have left to do is pray. I pray for Ian that he will be okay. I pray that I can accept whatever happens to him. And the only thing keeping me a float right now is knowing that families are together forever and that no matter what happens I will see Ian again. I am grateful for that knowledge.



I sure love my little boy and I will do everything in my power to give him the best life I can!

Broden and I only ask for your prayers for our little Ian. We are praying that these April showers will bring our family May flowers. We sure could use some flowers in our lives right now.