First Week at Home

23. March 2009 Michael

Hey Guys,

Hopefully you had the opportunity to read my last post. Mandy has been home with us for a week now and things are going great. Her weight as of this morning is 15.6 pounds. So she is continuing to gain steadily. But there have been some very cool things that have happened as well

Her skin has improved. She used to get horrible diaper rash and rashes on her face. That has cleared up. Mandy has very sensitive skin, and it had gotten to the point having to use water wipes to clean her bottom. Now we use the wipes designed for sensitive skin, and she is doing just fine. I think it must have been the industrial cleaners that were used on her clothing and bedding at the hospital.

Mandy does require a lot of care. Fortunately we have a lot of help. We have a nurse during the day from 7am to 3pm. Then Teresa and I have her care from 3pm to 11pm. After that we have attendant care from 11pm to 7am. It has been a lot of help.

Teresa and I are still catching up on sleep, but I hear that’s par for the course with a new baby. I’m sure that we will make the adjustments needed.

Thank You for all the prayers and support!

Love in Christ
Michael Blaes

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Mandy is coming home!

13. March 2009 Michael

Hey Guys,

Its official. Teresa and I have completed our training including the 24 hours of total care. To be honest Mandy’s care is not that difficult. There’s just a lot of things to do, and it’s repetitive. Heres how a typical day goes.

6:30 am Mandy wakes up check diaper and suction her if needed

8:30 am Breathing Treatment, and a massage ( to loosen the secretions) and suctioning diaper change if needed

9:00 am Start first feed and medication

10:30 am give mandy a bath, change clothes, and trach care

12:00 pm start second feed

12:30 pm massage and check diaper suction if needed

2:30pm check diaper

3:00pm start third feed

4:30pm massage and check diaper suction if needed

6:00 pm start fourth feed, do meds, check diaper and suction if needed

8:30 Breathing Treatment, suction, trach care change into pajamas and change diaper put mandy to bed

10:30 check diaper

12:30 check diaper suction if needed

2:30 am check diaper

4:30 am check diaper

and it starts all over again the next day

And that doesnt include therapy, cuddling, or extra suctioning or extra dipaer changes. And we have include some play time too.

Whew! I got tired just writing it down.

And we were tired after that night. But everything went great.

So everything is set, equipment and supplies delivered, Nursing and Attendant Care hired. Now all we need is Mandy herself!

So…

Mandy is coming home on Monday! She is supposed to be here at 9:30 am sharp. We are so excited! Its the end of a 15 month long journey and the beginning of another. Praise God!

So your’e wondering, whats going to happen to the site?

Well I plan to continue it and keep it updated with new pictures, news and share all the trials and the

triumphs as Mandy grows and God leads. expect a new post about once a week.

Now let me totally serious f or a minute….

Going through this experience has been both the hardest and the most joyous time of my entire life. It has been very difficult at times, and Ive shed a lot of tears. But I have learned to trust God in a way that I never would have otherwise. I know that my Lord and Savior Jesus Christ has never and will never let me down. and so I say to you my friends, No mater what you are going through; Put your trust in your Lord and he will see you through.

God Bless You and Keep You Make his Face to Shine Upon You and Give You Peace.

Love in Christ,

Michael Blaes

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Does Kurt Warner really know my daughter?

1. March 2009 Michael

Hi Guys,

It has been a busy time for us. As I mentioned in my last post, Teresa and I have been staying at the hospital for almost a month now, learning all of the aspects of Mandy’s care. Its been an incredible time, getting to know her all over again and finally being a family. Let me recap some of the things that have happened.

We have Mandy on the passing air valve up to about 30 minutes at a time. I cant tell ‘you how cool it was to hear her making noise for the first time. Actually I can. I created a video, keep an eye out for the link. I cannot wait to hear her babble and cry.

Next Mandy is continuing to get more and more active. Ive seen her lie on her tummy and hold up her head and look around. She’s doing that very consistently now. And yesterday She propelled herself from one side of the crib to the other in one push with her legs. It will not be long now! Once she gets started, there will be no stopping her.

Also Mandy has some pretty famous friends. There are a group of ladies from the Arizona Cardinals that come in to volunteer, including Alice Wizenhunt, the coaches wife, and Brenda Warner, Kurt Warner’s wife and they all adore Mandy. But last Friday, we got the ultimate surprise. Kurt Warner himself showed up in our hospital room! He even held Mandy for a bit. Teresa and I were just astounded to meet him, especially after he gave all the Glory to God after the NFC Championship. It was a treat that I will long remember.

Back to the training…

Teresa and I have finished all of the training. Now it’s down to one final test. We have to do total care for her for 24 hours. That is set for tomorrow morning. Please pray that God will give us what we need to get through. Ill try to post tomorrow and let you know how things went. Shortly after that Mandy will go home. All of the pieces are in place now.

Mandy is going home and we cant wait!

Love in Christ

Michael Blaes

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Update from Mandy Central

15. February 2009 Michael

Hey Guys!

I have some majorly awesomely exciting news that I know that you want to hear. Are you sitting down yet?

After over 14 months of trials and tribulations, Mandy is finally coming home!!!!!!!!!!!

Teresa and I are so excited. We have dreamed of this day. We had most of what we needed, and it’s all been sitting there at home for over a year. After a while, you start to wonder if it is ever going to happen. And it finally has.

So here is what is happening now.

Teresa and I are staying at the hospital doing our final training. We will be staying here for about a month ( we’ve been here about a week and a half now) We finished off the respiratory part, and most of the medical. We have a few things to finish up, including becoming CPR certified. That should happen next week. After that we will be doing 24 hour care for about 2 weeks. The hospital has a special area setup like a small apartment. Mandy will be moved over there and we will take over her care. The staff will be available if we need them but the idea is work through things ourselves. Once that is complete, then Mandy will be released to go home.

In our absence our house is being completely setup. Our living room will be “Mandy Central” with her crib, dresser and changing table and equipment being the centerpiece. I’ll try to snap a picture so that you can see it.

And we found out that we will get some help. We will have nursing and attendant care to help us.

Now on to Mandy herself….

She is continuing to slowly gain weight. She is up to 14.3 pounds as of last night. She is becoming very active now, constantly kicking and rolling around in her crib. The only problem is the pulse oxygen monitor. It is very sensitive and frankly was not designed for babies. So every time she starts kicking or if the wire to the sensor is not set just right, it sets off her alarm. I got woken up 3 times this morning, rushed over to check on her, just find out that she had gotten tangled up in the cord, and was barely moving her foot. After the third time I picked her up and rocked her back to sleep. I see some long nights coming ?

She’s teething now. In fact she has 4 teeth in. So she is chewing on everything in sight, including her g-tube and pulse ox cord. Every time I catch her holding one, I gently take it away and tell her no. But how do you tell a baby that what they are doing could hurt them. The G-tube goes into her belly, and will be very painful if she manages to pull it out. If she chews a hole in the g-tube, it will spray formula all over.

There has been some progress in her respiratory care as well. Her doctor has changed her from just using heated air to an H.M.E. (heat and moisture exchanger) during the day. It’s essentially a filter that fits over the Trach and holds in moisture. On Monday they are going try a passing air valve, which forces her to breathe out through her mouth. But the coolest part for me is if she can tolerate it, then we will able to hear her cry and make noise for the first time since she was born! I cant wait!

We have made some major progress.

There are still a lot of questions to be answered. We are not totally clear what will be paid for by our insurance and what we will have to pay for. The biggest concern is her formula which is very expensive. I checked online and it was something like $139.00 a case. Regardless we will have to make some adjustments to our budget. But I know that God has never let us down. He will provide as he always does. ?

So I would like to request prayer for the following;

Strength to finish the training
Wisdom to work out the kinks
Favor where we need it
God’s provision for everything we need

Thank You for all the prayers and support. We would not have gotten this far without them.

Love in Christ
Michael Blaes

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Look what Mandy has learned to do!

25. January 2009 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

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Happy Birthday Mandy!

18. December 2008 Michael

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.

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Mandy Is getting Better!

19. October 2008 Michael

Hi Guys,

I have some major updates.

Mandy is doing fantastic! She is gaining weight steadily now, and is up to 11 pounds. She is starting to look around, and pay attention to the things going on around her. A couple of days ago, I was watching the Occupational Therapist working with her. She was sitting in a little chair, just slightly propped up. She was holding her head up and playing with a toy that played music and vibrated. It brought tears to my eyes thinking about everything that Teresa, Mandy and I have gone through over the last 10 months. It has been an incredible journey and its just beginning. Mandy has surprised us over and over again. She is truly amazing! God has uniquely created her and despite her challenges she will fulfill the plan that he has set up for her. We just have to raise her up according to the scriptures and know by faith that she will not depart from it.

But alas I digress…..

Mandy has seen several doctors since my last post, including her Cardiologist, Pediatrician and a plastic surgeon who will hopefully fix her cleft palate. The cardiologist is very happy with her progress. The last set of echograms look really good. There is another hole in her heart, but he is hoping that it will close on its own.

Her pediatrician is pleased as well, with her weight gain and progress.

The plastic surgeon was concerned about her size and her “failure to thrive” She wants to see how she develops and will follow up in about 6 months.

Finally Mandy’s surgery has been postponed until the middle of November. They are going to put tubes in her ears and check her hearing again under sedation. Ill let you know when it is, once they finalize the scheduling.

Thank you for all the prayers. God is truly amazing and never lets us down!

Love In Christ
Michael and Teresa Blaes

PS I have been asked several times to share the back-story behind Mandy’s story, and am starting to work on it. Ill post it as I finish it.

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

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Mandy’s Challenges with Emesis

28. September 2008 Michael

Hey Guys,

Just a quick update….

Mandy is doing pretty well. She has so far continued to gain weight. However she is still having problems with vomiting or emesis as it is called in the medical community. This is slowing down her progress.

I have been trying to discover the cause for Mandy’s occasional tummy troubles, but have been unable to isolate it. We have tried different things; including making sure that her formula is made with distilled water. However the problem still occurs.

After two hospitalizations, and Mandy being poked and prodded in every way imaginable, all of her lab tests have turned up nothing productive.

I am very concerned about this issue, but am confident that everything that can be done or checked out has been done. Her Doctor is not overly concerned about the problem. He thinks it might have something to do with the pressure in her brain shifting, or perhaps her intestines. Frankly he doesn’t know. He is staying on top of the situation, and will hospitalize her again if necessary.

I know that God knows what is causing this problem. He is the great physician, and can reveal it to her doctor, or he can heal it instantly. I have learned through much trial and error, you don’t put God in a box. He will take care of it in the way that he wants to and there is no way to pin him down.

So like everything else, I have to trust him and rest in his arms. He has never let me down, and I know he won’t let Mandy down either.

So all of that being said, you now know what the prayer needs are. Also pray for wisdom and direction for Teresa and me.

Love in Christ
Michael and Teresa Blaes

PS. Please feel free to share your thoughts by clicking the comment link below. These comments are always encouraging, and God often uses them to remind us of his love and provision.

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Mandy Tune up Round 2

18. September 2008 Michael

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.

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Mandy in for a Tuneup

24. August 2008 Michael

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.

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