3 Major Updates… Maybe 4?

29. June 2009 Michael

Hi Guys,

I have a couple of major updates. Fasten your seatbelts and keep your hands inside the ride at all times. Sorry just had to set the scene….

Mandy is doing great. She is gaining weight now steadily. She is about 19 pounds now. When I think of where she has come from, I just want to hit my knees and just praise God. In fact sometimes I do. ? She has now been home almost 4 months now and for the most part things are going very well. Teresa and I are having a blast watching her grow. I love playing with her, especially tickling her and watching her giggle. All I can say at this point is Praise You Lord!

There have been some trials. Mandy can catch a bug so easily, because of the open Trach, so that is a constant challenge. Recently she came down with some kind respiratory infection. It took us over two weeks to get her well. Because of this we are limiting her exposure to doctor appointments and tests, along with short walks. We are not taking her to church at this point, which is a little frustrating. It’s hard to get the feeding you need when you aren’t attending as regularly as we would like to. All that being said, God is good, and he is still on the throne.

One really cool thing that happened is Mandy has been taken off of her heart medicine, and the Doctor doesn’t want to see her for a year. Wow! How Cool is That? Another prayer answered. I asked him if he thought she would need any more heart surgery in the foreseeable future, and he clearly said “I don’t think so”

Next Mandy will be having eye surgery on the 8th of July to determine what can be done with her vision. We know that she can see some, are not sure exactly how much. We had an ultrasound done and found that her eyes are not detached as was originally feared by her eye doctor.

Next Mandy saw a whole bunch of doctors about a week ago and they are collaborating to determine what can be done with her cleft palate. We are hoping that it can be repaired, but there are many questions still to be answered. I learned early on to stop asking the question “When?” and start asking “Whats next”

Finally The doctors are concerned about the growth of the plates on her skull. Her soft spot is still exposed and from what I am understanding, it should have grown in. So the team will be addressing that as well. It might involve some plastic surgery to repair. I’ll keep you updated as things develop.

Oh I almost forgot! One last update. We are moving! As you can probably imagine, a one bedroom apartment gets a little crowded with 3 people. Add to that all of the staff that works with Mandy and it gets pretty crazy. Teresa and I work from home, and it has hard to be productive with all of the noise and distractions. So we requested a 2 bedroom apartment from the complex and were 4 down on the waiting list, and our number finally came up. So we will be relocating at the end of this week. I’m pretty excited. We will have more room and have some private space for ourselves too. Praise God!

Prayer requests
Please pray for Mandy’s safety on the 8th, and that God would guide the doctor’s hands. Also pray for wisdom for the team that is making the decision about Mandy’s cleft palate and skull issues. Also for wisdom and grace for us so that the move goes smoothly.

Love in Christ
Michael Blaes

PS. As always, please share your thoughts by clicking the comment link below. We appreciate your feedback, and I cannot count the number of times that God has used you to restore us and give us peace.

Uncategorized | 0 Comments »

Mandy has a small setback

4. May 2009 Michael

Hey Guys,

It has been a crazy week. Mandy caught a bug, and has been sick all week. She’s been running a fever off on and on all week. But after several days of antibiotics and lots of love she is finally feeling better. She is moving around again. She pretty much slept all week.

It’s really hard to sleep when you know your little one is not feeling well. You feel like you are on alert, waiting for something to happen. How so like our heavenly father. The bible says he watches over us.

Life is precious, and we are not even promised our next breath. We have to just rest in him and know that he has everything under control.

Now that Mandy is feeling better, I expect a relatively quiet week. She has one follow-up appointment with her Pediatrician, and not much else. I’ll give you all an update next week on how she is doing. I’ve been working on some new videos and I will try to have those up soon as well.

Thank you for your prayers!

Love in Christ
Michael Blaes

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

PPS. If you aren’t receiving the updates from Mandy’s Story fill out the form on the side of this page. You will receive an email from mandysstory@aweber.com click the link in the email and you will be notified every time I add a new update.

Uncategorized | 0 Comments »

Mandy’s Dedication on Easter Sunday

19. April 2009 Michael

Hi Guys,

Mandy has been home, for just over a month now. And things are going very well Teresa and I are finally getting used to the schedule. Mandy is growing by leaps and bounds.

It has not all been smooth sailing though. Earlier this week we had a little emergency. Mandy coughed out her Trach, and the hole with her neck started to close before I could replace it. It was a little scary, but I remembered my emergency procedures, and Mandy was just fine. It did mean a night in the emergency room though.

Last Sunday, which was Easter, we finally dedicated Mandy to the Lord. Check out The video below. It was an incredible experience, and signified the end of one chapter and the beginning of a new one. Teresa and I are excited with the possibilities. But there is nothing quite so cool as watching your child grow up.

Think you for your prayers and support. We could not have gotten this far without them.

If you are struggling with anything at all I encourage you to trust the Lord. He will never let you down.

All things work together for good for those who love the Lord and are called according to his purpose. Romans 8:28

Love in Christ
Michael Blaes

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

Uncategorized | 0 Comments »

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

P.S. The best way to keep up with the blog is by subscribing to our email list. Simply fill out the form on the side, click the confirm link on the message we send you and you will be notified every time we post anything new.

P.P.S. Please share your thoughts by clicking the comment link below

Uncategorized | 0 Comments »

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

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

Uncategorized | 0 Comments »

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

P.S. Please share your thoughts by clicking the comment link below.

Uncategorized | 0 Comments »

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

Uncategorized | 0 Comments »

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

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

Uncategorized | 0 Comments »

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.

Uncategorized | 0 Comments »

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.

Uncategorized | 10 Comment »