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.
Hi Mike, I’t’s Michelle from Edmonton, I posted before I have SMA II. I’ve had it all my life anyway I’m now 40 and had a gtube since 1998 and fully trached and ventilator 2003. I have a big pointer. Our center has banned humidifiers instead use a special humidify-filter.changed every 2 days use body’s own humidify. The active sill use old way but 80% residents coming from hospital have MRSA..
The humifier especialy breed bad bacteria Studies show this We now have a more stable residents sincer switching. But I suggest you expore this on you or yahoo google. I can ask andget details The RT said pediatric filters exist,,,,I you’d like will be glad to help, I’m tired 1:00
oops website now correct
They really work well. Somes too much so you just shake the condensation out. Hang in there you doing spectacular…hones
GIVE OUR GIRLS A BIG HUG!!!!!!!
super job, we are very proud of the three of you.
MOM AND DAD
Hi Mike, Teresa and Mandy!
It was so good to see the videos and the pictures. She’s beautiful! My prayer for you guys is for God’s will to be done in everything. He is our Lord and He knows what’s best for all of us.
Remember that God has told us He will not give us more than we can handle, without also giving us a way out. That’s paraphrased, obviously, but I’m sure you know the verse I’m refering to.
Stay strong and stay faithful.
Love and hugs to all three of you,
Aunt Mary
Hi Mike and Teresa, I just learned of your story from the Daily Audio Bible. Your family has come a long way. Mandy is beautiful and is so blessed to have you as her parents. Take it one day at a time. I will be sure to pray for all of you.
Hi Mike and Teresa,
My heart, love and prayers go out to you. Hold on to each other and your child. Children are precious gifts from God. Your faith is strong. God will see you thru. What you have done is truly amazing. I’m not sure I would do as well if I were walking in your shoes. I will continue to pray God’s perfect will be done and comfort and strength for you both. Now that I have this web address, I’ll continue to watch. Love you both, Aunt Thelma