This Is The Main Point

Yesterday I heard from CHOP. They were calling to “offer me a second opinion.” Woo hoo! The only problem is that the appointment they gave us is October 19th. That is NINE weeks away. It was very nice of them to give us two appointments on the same day – back to back, but they don’t know me. They don’t know that I am willing to drive as far as it takes, as often as it takes, for as long as it takes.

Since we are not existing patients at CHOP there is no way for me to speak directly with the doctors to advocate for the twins. This is not ideal. I have never been great getting past the “gate keepers.” Having been in the sales business for a long time I am keenly aware that this is not my strong point. I pleaded with the scheduler to speak to the doctors again and tell them that I don’t need a same day appointment for both children, and that I am worried about letting the current GI doctor do a scope on BabyM given his lack of knowledge on their condition. She was very nice and told me she would email the doctors back and get back to me. She actually called me a couple of hours later. When I noticed the caller ID I was a bit disappointed because it almost seemed too quick. Apparently the doctors wanted to know when BabyM’s scope was scheduled for. I am still waiting to hear back.

In the mean time I spoke with another FPIES mommy and asked if she had any advice. I called the Eosiniphillic Clinic at CHOP and got some insight into how the clinic works. They told me that unless there is a confirmed EGID they will not see the patient. The good news is that the same doctors are the ones who see FPIES children; they just have to be set up as multiple appointments rather than in the clinic. The director of the clinic also told me that allergy is the driving force behind FPIES diagnosis and treatment. WHAT!? This makes me so frustrated with our Dr. Fancy Pants (GI doctor). He has never referred us to an allergist. I took them to an allergist once to look into IgE mediated allergies, but while I liked the doctor, she really didn’t know much to anything about FPIES (although FPIES was her impression). She handed me a medical study about the condition (which I already had) and sent us on our way. She did want to see the babies in a month to see how many foods they were on, but since they failed each trial I canceled the appointment. I am not sure now whether to be mad at myself or just frustrated. Maybe if I had kept going to see her SHE would have referred me to an FPIES literate allergist.

What to do from here… I am not sure. I know I cannot go back to the first allergist – she is no expert in the condition. I hesitate to switch to CHOP allergy since the twins NEED to see a GI just as bad. Perhaps I will get the ball rolling with CHOP allergy and CHOP GI.

Wisdom – I need wisdom.

Yesterday after the CHOP scheduler called me back about the date of BabyM’s scopes I sent out an email to some very amazing people. I have been sending prayer requests and updates to these people for almost a year and a half and I have no doubt that their prayers have made a difference. We have two children who before we have ever known what is wrong – have been getting the appropriate treatments. All along the way God has opened every door and provided for their every need. Sometimes it is difficult to remember that – but when I come to the end of myself God renews my strength. He has been doing that for a year and a half as well.

Today the story of Jesus calming the storm came into my mind. I was just walking up the stairs and a simple line came into my mind. “It was the main point.” Years ago I did a devotion with Sim, an amazing woman of God, where she focused on the fact that Jesus was sleeping. She repeatedly stated, “This was the main point – not the side point – Jesus was sleeping!” Often times we read this story in Matthew 8 and marvel (like the apostles did) that with just a word from Jesus the storm stopped raging.

The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"

What Sim was saying though is so important – and the Lord brought it to my recall today for a reason. Jesus was sleeping in the boat. He was not worried, he was not afraid, he was not scurrying around trying to save the boat, he was not even praying like he often did. He was sleeping. Like Sim said – this was the main point.

Today I am thinking of the twins and I know that Jesus is sleeping. He has it all under control. With one word he will speak things into motion.

“You will soon see the light at the end of the tunnel”