Author: Michael

Hi all,

It has been crazy busy here in Mandy land, thus the lack of updates. I’m not going to make any excuses; I will just do better. I commit to write one update per week, which should be released on Sunday.

Mandy is doing pretty well. She is growing like crazy. She is now up to 19.8 pounds. She has not gotten sick, which is amazing considering that both Teresa and I have been very sick. It took us over two weeks to finally get over it. We have done everything possible to keep her well, washing hands often, controlling coughs etc, but it hasn’t been easy. It is a miracle for sure.

So she acts like any other 2 year old. She chews on everything in sight, plays with her toys and cries when she is wet or wants be held which is often. 🙂  There is nothing as cool as holding your daughter. There is so much peace, and I wouldn’t trade it for all the money in the world. Even with poop, vomit and mucus, and waking up in the middle of the night to suction her, it is worth it.

One really cute/ slightly annoying thing is she likes to chew on her feeding tube. Just tonight, I checked on her and found her soaking wet and her bed covered with formula. Sure enough she had either pulled or chewed off the feeding tube. Oh well it all comes out in the wash.

So coming up on our very busy calendar, is an MRI on Tuesday October 20, for the purpose of checking to see if she is going to need surgery on her head to move the plates where they belong. They overlap slightly. They will have to put her under Anesthesia to accomplish this.

So please pray that this procedure goes well and that there are no side effects. Also lift up our finances and the eye surgery that Teresa will be having in a few weeks. I will share more on that later.

Love in Christ

Michael Blaes

PS Please let me you are still out there by commenting on the blog below. Also join our mailing list to ensure that you receive the updates which I promise will be more often. 🙂

Hi Guys,

It’s been a busy time in Mandy Land. She caught a bug over the weekend, so we have been doing 24 hour care, keeping her fever under control etc. I haven’t gotten a lot of rest as a result. All that being said, here is the latest

Thursday was a grueling day for us. We had 3 doctor’s appointment in the same day. Fortunately they were all in the same building. ? Anyway We saw Gastro, Respiratory, and her pediatrician.

All had pretty much clean bills of health for Mandy. She was a little gunky, needing to be suctioned frequently. Then Friday morning she started to run a fever and was absolutely miserable. Nothing would console her. We held her for hours, and finally she fell asleep.

It is absolutely true what they say about sleep. It is the best way to fight and recover from illness. This is especially true in Mandy’s case. After she woke up, she was a new kid again.

But we are not out of the woods. She is still not at 100% yet. Please pray for her to finish getting better.

Love in Christ,

Michael Blaes

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

Hi Guys, At 8:00 Tomorrow, Mandy will be having surgery tomorrow on her eyes. The doctor wants to do a full examination to see if they can repair her Cataracts. He will also clear her tear duct as well. I’m not really that concerned with it, Mandy has done very well under anesthesia in the past. But there is always a risk.

Thanks for your prayers,
Michael Blaes

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

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 numberswiki.com

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.

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 more info

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.

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.