Thursday, March 8, 2012

Boston..we have a date.

Well where do I begin????  There has been a lot going on around here…WE have a date for Avery’s surgery. It is going to be March 20th. Her fifth birthday. Which totally stinks for her. I am planning on celebrating it early for her..so she can have a good birthday and not one in a cast in pain. Maybe Ill just say that March 16th is her honorable birthday this year. 5 years old. how did she get to be 5 already?
So since we have a date I had to start things on my side. I am soo overwhelmed with everything that I have to do and get lined up. Wow…its a lot. Then of course the cost starts to really way on me..the cost of flying back and forth for every trip. the cost of lodging there. the cost of eating out for almost two weeks. the cost of her medical care. we think her insurance will pay for some of it but we don’t know yet. and that is only some of it. so we are still responsible for some of it. and the list seems to go on and on. How many trips will we have to make??? Well its not determined yet but way more then what I thought that is for sure.
All you can do is take it to the Lord in prayer. When life seems so hard get on your knees. Why oh why is it so hard to do though sometimes to just have the faith that HE will take care of our every need. “ And my God will meet all your needs according to his glorious riches in Christ Jesus.” Philippians 4:23 and every time when  I do start to really stress out about things in this life I need to stop and remember that I shouldn’t worry about it so much as I do and  just pray about it and cast all of our burdens to him. “Cast all your anxiety on him because he cares for you.” 1 Peter 5:7   “ Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.” Psalm 55:22. I am so blessed..So so blessed beyond words. Everything is falling into place as far as financial burden goes. God is so Good!!!!  Our church has set up a fund for Avery’s medical need so people can donate to help with the cost of everything. I am so blessed to be part of such a great church family.  Tears just flow. Words alone can not express our sincere thanks to everyone that has donated. May God richly bless you for your generosity.
Another mom gave me a couple of links about organizations that provide free medical flights for patients that need it. That have dr.s far away that they need to see. They have a lot of pilots that offer there time and usually there personal plane to help. So I have been trying to get all the paperwork for that done.. Just heard back yesterday that they accepted Avery’s mission. Praise the Lord! Tears just flow again. That means we are going to get free airfare to and back for our trips to Boston. Actually two organizations accepted her mission. So we have one to use for a backup if we need.  We cant pack as much as we would if we were flying commercially..well it is actually way less..we have a pound restriction. but we will manage.
We got into the parent housing program at Boston. They have three houses that are shared with other parents that have children at the Children’s Hospital. You have your own separate bedroom and share the kitchen and bathroom with the other parents. At first it was looking like they were full..I had to wait all week end but heard back that we will have a room at one of the houses. Praise the Lord! Tears flow again! They aren't free but drastically reduced compared to a hotel per night. It is the farthest one away from the hospital but they say it is still with in walking distance. I might beg to differ once I find out myself. but they said it was only six blocks. I guess I will just bring my walking shoes. Smile There is no parking at the house so you cant even rent a car if we wanted to.
We have to be up in Boston by Monday the 19th morning for all day of pre op and she also has to have ct scan. so we are looking to go up there the 18th..{our 12 yr anniversary}. At first it was looking like we were having to go up there a couple of days earlier bc they said she had to be sedated for the ct scan but then after many. MANY phone calls back and forth and me explaining that she did a MRI with out being sedated I think she can handle a CT for a quick five minute scan without being sedated. She is so used to all the drs and appointments she does great at them all.
I also had to meet back up with the school to discuss the special education classroom that I toured..and to discuss what we were going to do next year..well right now I am going to leave that for another post bc it didn’t go.well.at.all..and I hated that classroom!  HATED IT! I do have three new books to take up to Boston to read. Teaching math skills to children with DS.. Teaching Reading to children with DS. Classroom language skills for children with DS. still waiting on one more.  another math one. all recommended by other parents that have children with DS.
I keep going back and forth if I should reopen her caring bridge site back up for her hip surgeries or just update her on the blog…not sure yet. I'm leaning toward her on the blog. just easier that way especially with pictures too.

5 comments:

Laura said...

March is going to be such a big month for you. What a birthday this year for Avery! In a way, hips that work well will be a great birthday present but I know it will take a hard work and a long recovery to be able to appreciate them.

I'll be thinking of you these next weeks as you get everything ready for the surgery!

Becky said...

Oh, the Lord does provide, doesn't He! I know it is hard but, in those times, you are right. Pray and let Him hold your hand just as you are doing. That sweet girl will have a great birthday before the trip...:)

You are in my prayers, of course...

Debbie said...

Good to hear it all worked out!!

Pam said...

I'm so glad to hear that everything is coming into place for you all....God is good!! Praying that all goes well with Avery's surgery. I'm sending you an email with some of the links you requested for the IPad.

Ronda said...

Wow. Like I've said before... Isn't it awesome how God is so detail oriented?! He's awesome!! Will be praying for you!!