Things to pray for...

Here are the latest things we are praying for:

Health for us and the girls. Randy woke up yesterday feeling like a flu was setting in.

Update on the latest

This has been one of the most traumatic difficult couple of weeks yet. The ENT and Neurology appointments were good but not for the issues we are having right now. We are working with the GI clinic to get Micah's system moving again. He is still in alot of pain. He is also having coughing spells that lead to choking on his saliva and then to gagging and dry heaving and being unable to breath. I did this with him every 20 minutes for 4 hours last night. We are a mess at this point. I have calls into GI at this moment and hopefully they can help us. Micah is also having the panic episodes still.  It's been quite scary and makes it hard for any of us to sleep. Right as I am falling asleep he wakes with a coughing spell and needs immediate attention. He's keeping me on edge that's for sure. I am praying and believing we will get some answers today. I need some rest. I am exhausted. We all need peace.

I want to thank everyone who is praying and offering support to us as we are working through this.

Micah's feeding and medication issues

This last few weeks have been a bit of a challenge with Micah's feeding and medications. One factor has been that the meds that were set up when we left the hospital expired before we saw the doctors who would manage them. We thought that a couple of the meds were dropping off only to learn the hard way that he definitely needs them and will need them for some time. We have seen alot of dry heaving and irregular GI symptoms. At our GI appointment the meds were fixed and they also wanted to add one med and change his food to be higher calorie and to something more appropriate for his age. This has been a nightmare challenge. Basically I am going to be calling the GI department first thing in the morning to talk through the last few days and make some changes. Something has to change. No baby should suffer the way Micah is at this time. As I was/am typing this he woke up screaming in pain.

This weekend he has developed what looks like panic attacks where his entire body startles and flails. This has been very difficult to watch him go through. We are holding him ALOT and working to keep him calm to prevent any dry heaving. When his stomach is full of food or gas he can not burp or spit up so he dry heaves. Unexpected/Untended to dry heaving can create a whole other issue, such as ripping out his surgery.  To reduce the dry heaving possibilities we lowered the food he gets per hour and he is now on his food continuously for 20 hours a day instead of 17. Overall, it's very concerning and scary. We are always on alert. We feel helpless at times and it's a horrible feeling.

Another factor that complicates things right now is figuring out which doctor to go to for what. While in the hospital we were seen by several different departments. All of these departments have specialties, obviously, and all have follow-up appointments. We have Neurology this week and ENT next week. Until then Micah is not really set up in these offices outside of our hospital stay. So the challenge is who to go to for what. I can go to my primary pediatrician but he probably does not have all the info he needs to fully help him. The people who can help him still need to see him for the follow up appointments before they can do much. I'm praying to get into these doctors early this week.

Please pray:
-That I find the right doctor who can do something Monday.
-For an ENT appointment to be scheduled this week.
-For our Neurology appointment on Tuesday at 10:30 am.
-For his GI track to regulate.
-For us to find a food he will tolerate.
-For an agency or insurance to pay for the food he tolerates.
-For his meds to be effective and appropriate for his situation.
-For me to not just "get through" Randy's work week, Monday-Thursday, and instead have a great week.
-For rest and peace for all of us.
-For all the other stuff we are praying about....too much to list.

Thanks so much!



Update:
-Working with GI over the phone and making progress.
-ENT appointments at 11am today.
-Surgery follow-up next Tuesday.
-Neurology tomorrow.

Travel Date?!

So it's been awhile since I've blogged but that does not mean nothings been going on. Every spare minute has been filled and we have been maximizing every moment we can. I will work to get you up to speed. For now here's the latest.

Friday late afternoon we received an e-mail that had the subject line as "travel". As I saw this all I could do was yell for Randy to come to the office. As I read it informed us that there is a 90% chance that we have an Embassy date set for the very near future. This is where I lost all sense of composure and clarity of thought. I began to stutter and hyperventilate as Randy rushed into the office and I was trying to relay this exciting information. As he watched my efforts to communicate you could see the concern over what could this be all about. Between my attempts and him reading the e-mail the message was relayed and my brain was in a tail spin with no sight of recovery. I could hardly believe it. This is all real and it's happening in real life. Wow!

Now we have been asked to look for flight reservations. This is quite the experience during the holidays. I never imagined we would be getting plane tickets that cost so much at any point in our lives. To get tickets this time of year with our time frame and parameters is not a task for the faint of heart. We have a very real chance that we will be on an airplane for Christmas day. We are holding on to God's faithfulness and praying through every step of the way.

We would appreciate your prayers for the following details:
-For it to be 100% confirmed.
-For the perfect tickets regarding timing of purchase, price, timing of travel, seat location and number of layovers.
-For Micah to continue to improve and be prepared for us to come.
-For the funding to come in.
-For prep in packing, our home, the girls, etc.
-For good health for everyone in our family and those who will be helping care for our girls while we are gone.
-For clarity of thought in everything.

-also for my mom. This last week we have seen significant improvements. Please pray she continues to move forward and that she will regain her strength.

Thank you all so much!