Month: June 2008

Hey Guys

I have a quick update. Mandy is doing ok, but is still having difficulty tolerating her feeds. The doctors have slowed them way down, trying to get them under control. They will increase them as she is able to tolerate them. They are also making some adjustments to her medication, especially her thyroid, which appears to have been over-producing. The good news is that they do not think it has anything to do with her heart. So Praise God for that.

The bad news is I might be coming down with something, so naturally I will stay away, and continue to get updates by phone.

Please pray for both Mandy and I for healing, and wisdom for the Doctors and other health professionals.

Love in Christ
Michael and Teresa Blaes

Hey Guys,

I have a major update. It feels kind of weird writing this after my update yesterday, but I promised you that any time that things changed, I would let you know. Mandy was doing ok, but Teresa had noticed that she seemed thinner. She could feel her ribs. So I asked the nurse what her weight was, I was told about 7.3 pounds. I freaked, because the last weight I had on her was around 10 pounds which was taken on Mother’s day. She has lost a significant amount of her body weight. We had an appointment with her cardiac doctor yesterday. It was supposed just a routine follow-up. But then again with Mandy, when is anything routine?

Anyway, her doctor took one look at her, and commented on her loss of weight. He was very concerned and immediately took steps to address the problem. Things began to move very quickly, and the next thing we know, she is admitted to the hospital.

So that is where she is now. They will be doing a bunch of tests, and taking a hard look at her nutrition to get her to gain weight. I don’t know how long she is going to be there, but it feels like a major setback.

Teresa and I went home to get some rest. We got home after 4:00pm and slept until 2:00 am or so. We called to check on Mandy who is doing ok for the most part. They are having some difficulty adjusting her feeds. She threw up a couple of times. I’m sure that it will get worked out.

This raises several issues for us. First is the all-dreaded Transportation problem. I met with an advisor, and found out we will probably not qualify for the state insurance which was helping with some transport. We supposedly make too much money. Mandy will probably qualify for a couple of other programs because her medical issues, but Teresa and I are back to strictly having Medicare, which will only cover 80%, and will not help with any transport. I realize that 20% may not seem like much, but it adds up very quickly. We will be doing some research to try to secure some more insurance for us.

Frankly I’m frustrated. Neither Teresa nor I are in any condition to work outside the house. We have been working our business plan, which is coming together very slowly. I know that God will not let us down. It just weighs on me heavily.

The scripture that says look well to the ways of your household keeps popping into my head.

Please pray for the weight loss issue, and discernment and wisdom for the doctors.Also please pray for us for strength to endure and wisdom, along with the finances we need.

Love in Christ
Michael and Teresa Blaes

PS. Teresa and I are considering adding something to the website, and we wanted to get your opinion. How would you feel about us offering coffee mugs, t-shirts etc to promote Mandy’s Story? Please share your thoughts by clicking the comment link below.

Hey Guys,

I know it’s been a while since I’ve made a post. My intention was to post when I had updates, but I realize now that we need to update everyone more regularly. So I will do my best to update the website at least once a week.

So here is what has been going on for the last couple of weeks.

I completed all of the insurance and long term care paperwork. These have been submitted, and we are now waiting for everything to move forward. We are still having some transportation problems, and because of a miscommunication, we have not have been able to see Mandy nearly as often as we wanted and needed to. We have completed the training for the medical side except for her medications. Now we are just waiting to complete the respiratory part. So far we have been signed off on suctioning and trach care. Now we need to do trach replacement, ambu-bag, and CPR. These have to be completed before Mandy can come home. So that is the next step.

We did get to see Mandy today, and she is doing really well. I think she is starting to teethe though. Both Teresa and I held her for a little bit, and it was a really special moment. She calmed down and just laid there and looked up at us. She especially likes to suck on my finger. I’m not going to be able to do that much more. Her jaw is really strong, and once she gets her teeth in, I might just lose a finger.

We have several Doctor’s Appointments coming up and we will keep everyone updated as things develop. Please continue to keep us in prayer. We are still struggling financially, although we are getting some debt paid off. We have some major decisions coming up regarding the long term of Mandy. Please pray for us for wisdom and guidance.

Love in Christ,
Michael and Teresa Blaes

PS. Please share your thoughts by clicking the comment link below. These have been a great encouragement to us.

Hey Guys;
Mandy is doing really well. We had a care management meeting Thursday, and got some updates.
All I have to say about this one is Praise God!!!! The MRSA is gone! They have stopped requiring us to wear gowns while holding her. She is up to 9.9 Pounds now. She continues to grow like a little weed. She is becoming more and more like a “normal” kid. I say that with tears in my eyes thinking about all we have been through. 2 heart surgeries, the times she coded. The months and months and months of her being in the hospital. It has been an adventure. I give all the glory to God, not only for Mandy’s healing, but also for his support of us. One of my favorite scriptures comes to mind….
“Come to me, all of you who are weary and loaded down with burdens, and I will give you rest. Matt 11:28 (ISV)
One of the biggest things that I have learned through this trial is that my strength and my answers have to come from the Lord my God who is my ever present help in time of trouble. He is all knowing, all powerful. He knows what I need even before I ask. Those words are not just clichés or meaningless words from an ancient dead book. Instead they come from his relevant living word.
When we need finances, he brings them, when we need peace it comes, when we need healing that comes as well. All of our provision comes from him, even when we blow it.
I am dealing with a situation that is entirely my fault. We are having some issues with our insurance. We were supposed to have a review, and I completely spaced it. So now I have to fill out paperwork, and reapply. Please pray that God will give us the grace and favor we need to get things reinstated quickly as it affects everything involved with Mandy’s care. Fortunately I found out that once it is reinstated it will retroactively pick up the tab. So we will not end up with a whole bunch of bills.
One of the biggest problems it caused is with our transportation. The insurance was paying for us to go to the facility to train. The facility’s administrators are doing everything they can to help us, and have agreed to provide some transportation. So I praise God for that as well.
It is absolutely critical that we are able to get there regularly as scheduled, as well as getting our insurance situation dealt with, because we are about 5 weeks away from Mandy coming home!
Thank you for all your prayers. Believe me God is hearing and answering them. Please share your thoughts by clicking the comments link below.

Love in Christ
Michael and Teresa Blaes