Sunday, April 25, 2010

Much to be Thankful for...

The last 9 months our lives have litereally been a whirlwind. I'm still waiting to land. It has been very interesting to watch God move in our lives and Micah's adoption. We have been learning to cling to the Lord in ways we never imagined and watch our world be rocked in every way.
As I look back it is abundantly clear how the Lord has directed our every step and given us what we need for the moment. Our job has been to be obedient and continue to move forward at whatever pace He lays before us.

The last few weeks have sure had there challenges regarding Micah's health.

As I look at them and how hard it has been I can see why the Lord moved us through the process so fast we could not fully research all the aspects of Micah's issues. Issues we could only speculate and guess about until he was home anyway. There would of been many opportunities for fear and doubt to creep in, which could of completely destroyed this awesome plan, our destiny, to be Micah's forever family.

It is abundantly clear that our job will continue to be obedient and rely on the Lord for what we need in the moment, day by day, hour by hour and minute by minute.

Micah is doing better. Today was a good day for him. Our happy baby is coming back more and more each day. There are still GI issues to be resolved but we are making progress. As we assessed and peeled away issues we also discovered he has a bit of a cold/allergies that are causing some sinus drainage/congestion. It's hard to tell if he is congested because he always sounds congested due to his underdeveloped airway. We've had two decent nights of sleep and are feeling a bit more human. Praise the Lord!

We have also been trying to figure out how to get a break, some respite, from the intensity of Micah's care. We are thankful for a couple of very trusted families who have offered to learn how to care for Micah. This will still take time before we will be able to go on a date, but it's progress. Half the battle, the hardest half, is finding someone you trust. Now it's building trust between Micah and them and teaching them the in's and out's of how the g-tube works.

I'd also like to give an update on the Crazy Love Party we took part in, you can read more here and here. We are humbled and so very thankful for those of you who have sent us some Crazy Love. We greatly appreciate you all and the part you are playing in Micah's story. There's also a Crazy Love Challenge #2 that you can find here. This is an opportunity to pray for other people's needs and send another kind of Crazy Love. When this challenge was posted we were in the thick of medical issues and needed all the prayer we could get. We posted ours list here and believed it could only get better. Now that we are coming up for air I am looking forward to reading more of these requests and praying for these needs of fellow bloggy friends. There is always room for more prayer and I encourage you to also check out these needs and add a few to your prayer list as well.

We are so thankful that God grabbed our lives as we knew them and shook them up to fit His perfect plan...a plan we never expected and could not imagine living without.

Wednesday, April 21, 2010

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.

Monday, April 19, 2010

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!

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

Thursday, April 8, 2010

Making progress

We are still here....I know it's been a few weeks since there's been any real updates. These last few weeks have been full of adjustment and appointments. Micah is doing well overall. We are pressing on towards adjustment. We have been tremendously blessed in many ways. We are also very exhausted and are in bed right after Micah. It's been challenging to accomplish the basics. Today's HUGE success was Micah started sucking his thumb! This is amazing considering how tight his hands can be. I'm so proud of him!

I will be posting more soon.....I hope...