Author: Michael

Hey guys,

I have some cool updates concerning Mandy. She is doing really well. She weighs almost 14lbs. now. Her doctor has increased her calories, and she is responding well. Teresa and I spent several hours with her yesterday, and it was a real treat. When we first came in end, she recognized us instantly. She was kicking and wiggling and she had a big grin.

You could tell that she is feeling good. She was so playful. Teresa and I held her for a while, and then we got to watch her work with the physical therapist. She sat her up, and worked with her to strengthen her neck and back muscles. She’s not quite sitting up on her own yet. But she is getting stronger. Then she laid her on her tummy, and had her work on strengthening her arms. Her legs are strong, but she has not quite gotten down the arm motion yet. Still I believe she will be crawling soon. Then there will be no stopping her!

One of the things that happened is while the physical therapist was out of the room, Mandy blew a raspberry. It was so cute. Then when the physical therapist came back, she did it again. The physical therapist brew one at her I teasingly told the therapist that she was teaching my daughter bad habits and her comment was “ yep, it’s a bad social habit, but it’s a good physical therapy habit. “ I thought it was the funniest thing. After that, Mandy was really tired. I think the physical therapist wore her out.

It may seem rather mundane and unimportant, but it is a real treat for me to see my daughter acting like a normal kid. A year ago, we were not sure if she would make it. In fact, this was about the time when she had her first heart surgery. So it is very special to me to see her doing so well.

My Lord my Creator, has been so faithful. He has brought us through very difficult times. And I believe he will do the same for you. All you have to do is trust him and know that he will take care of you. Whatever you do, don’t give up. Your answer is right around the corner.

Love in Christ
Michael Blaes

PS. Please share your thoughts by clicking the comment link below.

Hi guys,
It’s been quite a while since I’ve posted, so this will probably be a fairly long post. To be honest, I don’t always know what to write. I know everyone wants to know how Mandy is doing.

The truth is she’s doing really well. she is gaining weight fairly consistently. In fact she is between 13 and 14lbs. now. I just love saying that because I never thought that would be possible.

I was sitting down today remembering Mandy’s first day of earth. You see today is a very special day. Today is Mandy’s birthday! There for quite awhile I wasn’t sure if she would live long enough to celebrate this day, but I thank God from the bottom of my heart that she did. There are no words that can express how this makes me feel. there’s no praise that can be enough to think my father my Lord and savior Jesus Christ for being there for all of his.

For it is truly been a battle. But we have come so far that we are coming even closer to the time when we finally bring her home.

All praise and honor to God!

So now for the updates…

I’m sure that you probably remember that she was going to have tubes put in her ears. Well, that happened in November, and now she has normal hearing! She is so much more active and responsive. It’s almost like I have a different child now.

As you can guess, Mandy has many different doctors involved with her care. So we frequently have doctors appointments, in addition to her attending physician seeing her a few times a week. We’ve recently had follow-up visits with her cardiac doctor, her thyroid doctor, and her ENT. All of her doctors are pleased with her progress, and have set up follow ups as much as a year out.

So what’s next for Mandy?

The biggest goal for Mandy is to continue to gain weight. In order to have the necessary surgeries she must be around 20lbs.. So we have a long way to go.

Something pretty neat happened today that I wanted to share with you. The police department came into Mandy’s hospital and distributed Christmas presents to all the patients. I thought it was pretty cool

Teresa and I will continue with our training. We just have to keep practicing until it becomes second nature.

I wanted to thank each and every one of you for your prayers, especially during the hard times. Never doubt that God hears you, or that he answers prayer. I can attest from this year, which has undoubtedly been the hardest yet the most joyous year of my life. I have grown in the Lord in ways I could not have imagined.

To reset and I and Mandy wish you and your family a merry Christmas and a prosperous and blessed New Year!

Love in Christ
Michael, Teresa, and Mandy Blaes

PS please share your thoughts by clicking the comment link below. We treasure these, as they always seem to come at the right time.

Hi Guys,

This is going to be a long post, because a lot has happened. Its been a crazy time, with a lot of going back and forth.

Mandy is doing pretty well for the most part. She had been transferred back to the nursing facility. She was ok for a few days then she started vomiting. It happened while the doctor was checking on her. So she was sent to the emergency room, where she was admitted back into the hospital. They ran a bunch of tests, and couldn’t really find anything wrong. She has not vomited once since she was admitted, so they will probably release her in a couple of days. They are trying a new formula. Hopefully she will tolerate it well, and start gaining weight again. That has been our biggest concern. She has had so much trouble gaining weight. The doctors are on top of the situation. Please pray that God will give them wisdom and discernment.

Our training is proceeding well. We tried 4 hours a day 4 days a week but it was not sufficient time to train. So we have modified the schedule to 10 hours a day, 3 days a week with a day in between to rest. I think this will work better. Of course it will depend on doctor’s appointments and other scheduling issues.

Teresa completed her testing successfully after 4 days in the hospital. It has been determined that her seizures are non-epileptic. That means they are being caused by something other than her epilepsy. So her doctor has weaned her off her medication, and the seizures seem to be reducing as well. She is having some issues with migraine headaches. It probably has something to do with the medication change. But God is in control and we know he will bring us through this as well. Please pray that God will reveal what is causing these non-epileptic events” and headaches

We sense some major changes coming. We know at some point Mandy will be coming home, and we are preparing for that. We really need God’s direction and wisdom during this time. There are a lot of decisions to be made and not all of them are easy ones.

We will to continue to seek out wisdom and understanding. The best way that I found to find her (Wisdom) as it says in Proverbs is to hit my knees. One thing I know is that my God has never let me down. I will rest in the shelter of the most high.

Thank you for all the prayers and support. It is amazing to me how someone will comment on the blog at exactly the right time and it will exactly what we need. Trust me when I say when you have no one else to rely on, trust our creator. He will never let you down.

Love in Christ
Michael and Teresa Blaes

PS. Please feel free to share your thoughts by clicking the comments link below.

Hey Guys,

I know it has been a few since I’ve updated. It has been a really crazy time for us. Now that I have a few minutes, while Mandy is asleep, I thought I would update

I mentioned in the last post that we are staying at the hospital with Mandy, learning all the aspects of her care. It’s been kind of like a cross between medical school and boot camp. Here at Mandy U, our course schedule looks like this.

8:00 am Breakfast
9:00 am Suctioning and Secretions

10:00 am Feeding Pumps, formula bags and all things G-Tube.

11:00 am Diapering and Dressing
12:00 pm Lunch
1:00 pm Trachs and the ties that bind them
2:00 pm Hand washing and infection prevention
3:00pm Bath time administration
4:00pm Snooze Time
5:00 pm Dinner
6:00 pm Medications and the anatomy of a syringe
7:00 pm Cuddling and Family Bonding
8:00 pm Preparing Formula and Dietary Manipulations
9:00pm Bedtime stories and nighttime feedings
10:00 pm Go to bed

I will admit that I am being a little facetious, but I am not kidding about the number of training hours. We usually spend about 12 hour’s day training. It makes for some very long days, but I know in the end it will be worth it.

There are a few praise reports. Mandy’s minor surgery went well and they determined a few things. Her airway is clear. Her Doctor said her airway is “a little floppy” They also tested her hearing. She has a moderate conductive hearing loss. This can be corrected with hearing aids, or perhaps surgically.
We got a report Monday that her thyroid was in the right range. So she should start to gain weight more quickly. Also we got word yesterday that the long term care insurance was now in place! This has been a long battle. In fact she was denied the first time because she had to go back into the hospital. This is an especially important step, because it will pay for the home nursing, and therapy and such.

Mandy will probably be in the hospital for a while still. She has to gain some weight, and there are several surgeries that need to be done, including cleft palate repair, cataracts removal, and possibly hearing restoration. So the battle is far from over.

Prayer Requests:
That Mandy will gain weight.
That we will get through the training successfully.
Please pray for wisdom and favor and discernment for everyone involved, and for the right decisions to be made. Ultimately that God’s perfect will be done.

I know this has been a long post and I appreciate your patience and support.

Love in Christ
Michael and Teresa Blaes

PS. Please share your thoughts by clicking the comment link below. They are so encouraging to us.

Hey Guys,

We have some good news. We got the results back from the CAT scan. There has been no change! Thank You Jesus! Everything else is going pretty well. We are still having some challenges with the training. More on that later

Thank You for Your Prayers

Michael and Teresa Blaes

Hey Guys,

I just finished creating our first two videos of Mandy. Let us know what you think. I used my cell phone to shoot the video, so it is a bit rough.

Love in Christ
Michael and Teresa Blaes

PS Please share your thoughts by clicking the comment link below. You can also comment and vote by clicking the video itself.