Month: August 2008

Mandy in for a Tuneup

Hey Guys,

Back again! I have a major update and several prayer requests. First of all Mandy suffered a setback and at first her doctor thought it was Pneumonia. After chest x rays and blood tests, that possibility was eliminated. Now they think it is something viral. Mandy was admitted to the hospital Thursday, and is doing well. She will probably be there a few more days.

They also did a CT scan, and determined the Hydrocepolis (water on the brain) had not changed much so there is no need for intervention right now. However, the Neurologists think that she will probably need a shunt at some point in the future.

She was vomiting a little Wednesday night, and so they are looking into that as well. They had her on Pedialite and she did ok. Now they have restarted her feeds and are gradually increasing them. While she is in the hospital, they are going to take a serious look at her nutrition.

All that being said, our training is going very well, and we look forward to the day when we can finally bring Mandy home. However we know it will probably be a while until she is medically stable. For one she has to gain some weight. She is way below what she should be at 8 months old. So we will continue to fight the battle, and learn what we must to accomplish what God has given us to do; to raise our child in the way she should go, so that when she is old, she will not depart from it Proverbs 22:6.

One last thing, Teresa will be going into the hospital herself on Tuesday for some tests concerning her seizures. She could there as much as a week, while they try to determine the cause of them.

Prayer Requests:

For Mandy’s weight to go up
For us to finish our training successfully
For the doctors to figure what is causing Teresa’s seizures and determine a solution
For strength, wisdom and discernment concerning everything.
For an unspoken request.

Love in Christ
Michael and Teresa Blaes

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

Mandy University

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.

Weight Gain and Bootcamp

Hey Guys,

There have been some major developments. Mandy is doing well. She is up to 9.6 pounds now. Praise God! She is growing closer to being able to be discharged.

One very cool thing happened last night. Mandy was crying, and none of the usual things were wrong. Her diaper wasn’t wet, she did not need suctioning and it wasn’t time for her feeding. I picked her up and held her for a while. She stopped crying and calmed down. It was so cool and a bit surreal at the same time. I started to remember the first couple of months of her life. She was on a ventilator from about a week after she was born in late December until the Tracheotomy was done, which was in late February. During this time she was sedated, and we were not able to pick her up or play with her or care for her in any way. The nurses did everything, because of the mass of monitoring equipment, leads, IVs etc that were in place.

We are entering a new phase in our training. We are now staying at the hospital with Mandy, learning how to take care of her full time. Our plan is to stay for a full 3 weeks. So far I have learned how to do her feeds, prepare and administer her medication, and work to perfect my suctioning technique, along with Trach ties and trach replacement. Teresa has been learning how to dress Mandy, and change her diaper. This has been a bit of a challenge for her not being able to see.

One extremely cool thing to report is that we now have a whole new support team that is helping us with advocacy, resources, and more. This is one facet of help that we have not had up to this point. Arizona has a ton of resources that we were made aware of initially. Teresa and I are confident that we will be able to take care of Mandy.

Train up a child in the way he should go, Even when he is old he will not depart from it. Prov 22:6 (NAS)

But we are not out of the woods yet. Please continue to pray for us for discernment, wisdom and the Lord’s will in our situation. I know that he will carry us through.

Love in Christ
Michael and Teresa Blaes

PS. Teresa and I would like to thank those who have contributed. We could not have gotten this far without your help. Things are a bit crazy right now, and finances are stretched thin. But we know that God always comes through for us. If you would like to donate, you can use the button on the side to do so.

PSS. Please share your thoughts and prayers by clicking the comments link below. They are very encouraging to us.

PSSS. We are working on a new video, and should have it posted shortly, and I did not use my cell phone this time. 🙂