Sunday, May 31, 2009


we leave for Gainesville for Joshua's clinic day, then on Tuesday they will do the heart cath. We are not sure on the time yet for the cath, but I'm pretty sure it will be before nooon.

Please pray for:
Safe travel for us and God's perfect peace before, during and after the procedure.
Wisdom for the doctors who are treating Joshua.
No complications!
Absolute certainty of exactly what is going on with Joshua and certainty & cohesiveness in how to treat it.

Please pray that all three of us can be a witness for the doctors & nurses and that Alex, Micayla & Brandon will be fine while we are gone.

I will try to update from the hospital but not sure if I'll have internet access or not.

Please also pray for Brandon. He wrecked his motorcycle today on our street! We were all outside when it happened and I can't seem to get the image of him tumbling head over heels down the pavement out of my head. It was awful. He is okay but banged up pretty bad. Thank God he is still walking and talking and alive! Pray he will get rid of that bike!

Tuesday, May 26, 2009


So... the doctor's office in Gainesville called and they have an emergency cath coming Thursday so we have been bumped to next week.

Office workups on Monday and surgery on Tuesday.

I'm not slightly stressed since Aunt Julie flew in today from Missouri to take care of A & M, Heather had arrangements for Grandpa, Dan (a friend of ours who Joshua requested to be there with him) had arranged to take off work, and Joshua has worked his butt off to take all of his exams today at school since he would be out the last three days of school this week!


Please continue praying for Joshua and the rest of us as we heavily anticipate next week and adjust to this new plan.

Thank you!!

Saturday, May 23, 2009

Joshua's New Pulmonologist

We had our first appointment with our new pulmonologist here in Jax last week. It was a good appointment and we love our new doctor. (The insurance change forced doctor changes with two of his doctors.)

He was very easy to converse with and patient with my many, many questions. He was quite impressed with the notebook we've compiled of Joshua's medical records. You would be too if you could see it. It's quite impressive with it's many dividers for each department. Cardio, Pulmonology, Pulmonary Function Studies, Doctor Notes, Medical Records... you get the picture.

He took our "book" out of the office to go over each page and have his office make a copy of the entire thing! It was very scary to see that book leave our presence. A lot of blood, sweat, and tears have gone into that thing and I don't like it out of my grip. Unless it's in Heather's grip, and then it's okay, since her blood, sweat and tears are in that thing also!!! Thank you Heather so so so so so much for all you've done to help us!!!!! You're the best!

Back to the appointment... the kind, patient doctor went over everything with us. He is familiar with the doctor who will be doing the heart cath in Gainesville. It was just another confirmation of how wonderful this doctor is going to be.

I was slightly concerned when he said that heart failure can be a side affect of the heart cath. He explained how he thinks the procedure will go. He thinks they will try to occlude the PDA temporarily, then waiting and watching what the heart does. If he starts into heart failure, they will not occlude the PDA. At that point we will have to work on improving the pulmonary hypertension (PH) before trying to occlude the PDA. If the heart responds well to the occlusion, they will hopefully be able to repair the PDA.

Oh, and he is not really convinced there is a PDA. Now in his defense, he has not seen the pictures of it, just the report. He says this is just so rarely seen in adults, that he has a hard time believing it's really there. Little does he know how Joshua has never fit the "norm" so to speak. It's going to be amazing how much they are going to learn from our son!!

I asked if it's still a good idea to go ahead with the cath and he said a definite yes. The cath will show us 100% the levels of the PH as well as any concerns in the ventricles and arteries.

Thank you for your prayers and for so many offers of help extended to our family. We are very humbled by your love. Thank you.

Isaiah 55:8 "For my thoughts are not your thoughts, neither are my ways your ways, saith the Lord."

Monday, May 18, 2009

Plans for the Week

Tomorrow afternoon we have our appointment with our new pulmonologist here in Jax. I am looking forward to meeting this doctor and getting established with him. We'll be seeing him a lot I'm sure to get the lungs to work better. We had to change docs when the insurance changed.

We're getting ready to get down to Gainesville next week. We're excited and nervous but more excited. Joshua just wants to get it done.

Before we do that though, I am leaving Wednesday for our annual homeschool convention in Orlando. I am always so excited about convention and being re-energized and refreshed with this huge task of educating our children at home. I am excited to spend a few days with my very good girlfriends and have some time to relax and rejuvenate, especially with the week we have coming up next week! The good thing is I have a pretty clear idea on curriculum changes and what we'll need so that makes it much easier!!

Thank you for all your prayers for Joshua and for our family. We are doing great as a whole and are ready to get this surgery behind us.

Friday, May 15, 2009

So Blessed

I've been thinking this week of all we have going on and the many things I'm trying to juggle and keep up with. Some days I feel like I can't possibly handle one more crisis or one more request. Other days I just want to sit and cry.

Then other days, more so than not, I have peace, a peace that passes all understanding. I'm so thankful for those peaceful days. I feel like the world says I should be freaking out and worrying, not that I don't some days, but for the most part, I feel peace with all that is going on. That is only from the Lord.

Today I've been reminded over and over how blessed we are and what wonderful friends and family we have. Even friends we don't get to see often are there. Today, the doorbell rang, and Micayla comes to me and says, "mommy, there's a police officer at the door." It happened to be an old friend of ours we haven't seen for a while. He and his wife have kept up with us through a mutual friend as well as our blog. He stopped by to check on Joshua and make sure we're not totally losing it see how things are going with us. What a nice surprise.

Several of our friends, as well as family, have offered to help us with whatever we need. Especially figuring out what to do with Alex and Micayla while we're gone and our zoo Mick and Mac and Hammy. Gotta love all those pets!

As it stands now, John's sister Julie is going to come down from Missouri and stay with the kids. They are gonna LOVE having Aunt Julie here. She will probably have second thoughts have a great time while she's here too and most likely learn a whole new appreciation for her approaching empty nest.

Anyway, I am just wanting to tell you all today how thankful we are for such great friends and family. They are willing to do whatever we need at a moments notice. Thank you so much for loving us.

Thank you Lord for such wonderful gifts of friends and family.

Sunday, May 3, 2009

Surgery Date

It's very late and we've had a busy weekend but I wanted to get this out to keep you all updated.

I received the call from UF Friday! The nurse was great to work with and was patient while I asked my 1000 questions. I have a much better understanding and am excited for Josh to get down there.

We will be traveling to Gainseville May 27th for his clinic appointment. At this time we'll get to meet the doctors who will be treating Joshua. I was very happy to hear we'll also meet with a pulmonary hypertension specialist. They will do his work up, chest x-ray, etc also that day. We should be there about 4-5 hours.

The next day we will travel back down there unless we stay over night. He will have his surgery for the heart cath that day. We will not know until we speak to the doctor as to what extent or exactly what type of cath will be done. The nurse was very kind to answer all my questions about the different types, which I won't go into here, but I feel very comfortable in my understanding of them and am ready to get face to face with the heart specialist there. I did find out also that the doctor who will be doing Josh's cath is the head of the cath lab there. That makes me feel much better.

If they are able to repair the PDA, he will be kept overnight. This is my prayer. I pray they will be able to fix everything and keep him to watch it.

Lord, please give these doctors wisdom to do what is exactly right for Joshua, specific to him. I know you already know exactly what the plan will be and you have it all under control.

Amen and good night.

Friday, May 1, 2009

Patiently Waiting ....

So... I called down to UF and am still waiting for them to call back. I want to make sure Joshua's file hasn't gotten lost or stuck under a pile on a busy doctor's desk.

I feel like I need to keep heavily pestering, I mean checking on things to make sure the ball is still rolling.

I hope all of you have a good weekend!! We're glad it's Friday. We love our weekends, it's the only time we get to have all of us together at the same time for more than a couple hours.