Tuesday, April 22, 2014

Because He Lives, I can face tomorrow!

I hope you had a very blessed Easter!  Easter...the very reason for our Hope!  It was a beautiful Easter service on a beautiful day!  The weather was so fitting...just gorgeous!  We sang "Because He Lives;" it brought me to tears...  Yes, truly, because He lives, I CAN face tomorrow and all the tomorrows after that.  Praise the Lord for that!!  I would have nothing if I didn't have Jesus!  Then there's a verse in the song about how sweet it is to hold a newborn baby as I held Amelia sleeping in my arms....I copied the song from the songbook below.  I absolutely love the hymns because each verse has such meaning that gets me every time!  After the service, I was asked if they played that song just for me...I certainly do believe God has every single detail of our lives planned out, and that was one of them.  :)

Smiles from all 3 at the same time!
Sweet sisters...
Enjoying the sun!! 
Amelia's blood pressure was good last Wednesday.  Down more from last time, so I hope that means the medication is working!  We will get another echocardiogram in a couple months to see if it's actually working to stop the growth of the aorta.  I'm already nervous for that appointment.  I told a friend of mine today that during the day it's not so bad, I go about doing what I need to do, trying to spend time with all the kids...but, then all of a sudden it will hit me and to think that it's all riding on this medication alone, it makes me sick to my stomach.  That's when I have to remind myself that it's useless to worry about it.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

Today Amelia starts physical therapy on her legs and will continue occupational therapy on her hands and upper body.  For those of you that don't know (I didn't at first either), physical therapists work with lower extremities and occupational therapists work with upper extremities. 

On Wednesday, we have another full day.  We were referred to an opthamologist.  With different syndromes, there can be issues with the eyes, so the sooner we find that out, the better.  We don't anticipate any issues since Loeys Dietz Syndrome typically does not have problems with the eyes, where Marfan Syndrome does.  But, since we will not have the genetic test results back yet for a while, we need to be sure.  A little bit about that...  They are testing Amelia for a panel of 12 different syndromes (3 of them being the 3 types of LDS) where a lot of the characteristics overlap, but then there's a few characteristics that are only found in certain syndromes that are not found in others.  Amelia has at least 3 characteristics of Loeys Dietz type 1 that are not found in the other syndromes.  However, in the meantime, we have to cover all our bases, which I am okay with.  Pray her eyes check out good! 

She will also be seeing Dr. K on Wednesday to check on her braces.  She already has some padding and a silicone spot for some pressure sores that she was getting and those were getting better, but now there's a couple spots that have shown up again.  Hopefully it will be an easy fix, otherwise, they said they will have to make a mold to her feet if they don't get better....not exactly sure what that all entails, but it reminds me a little too much of the casting, and for Amelia's sake, I'm not ready to go back there yet.  Pray for an easy fix! 

Lastly, we'll stop by her cardiologist to get another blood pressure check and if all is good, they'll up the dose again.  Praying we can increase the dose and get closer to our goal! 

Again, thank you for all the prayers and all kinds of support!  I would love to list all the ways we have been blessed, but I don't want to accidentally leave someone out, so please know that however you have helped us, you are truly a blessing and we thank God for each of you often!  However, I can say that all the many cards we have received (from that first ultrasound) and still receive are awesome!  I have each one sitting in a box by the chair where I do my devotions and quite often I will start just going through them again and I am so encouraged!  Someday (probably in the very distant future) I would love to make a book of all the cards, messages, emails and texts I have received along with the many pictures I have taken along this journey!  God has been good! 

Leaving you with my one of my very favorite Easter hymns ~ "He Lives!"  I serve a risen Savior!  I so enjoyed singing this on Sunday.  "You ask me how I know He lives?  He lives within my heart!"  


Ps19 said...

I just love reading your blog...such a vivid picture of our wonderful Savior's work in each life. How each detail is put in place by His gracious hand. So thankful that you are gifted with helping us all focus on each day as a gift from God, sometimes that detail can be missed because of our busy-ness.
The picture of the three kiddos sitting in the chair is just beautiful, can't believe how big each of them are...time seems to go so fast.
Thanks again for helping us to focus on each moment :)

Shirley Ensing said...

What a beautiful heart-felt update.
Your testimony of your faith has been so strong. You are honest with your feelings and all the time you are writing-you are trusting God and giving Him the Glory. We will be praying for our beautiful Amelia and that the medication is being received well in her little body. Because He Lives You Can Face Tomorrow! Love you - Mom and Dad