A sparrow when I'm broken, and eagle when I fly.....

Welcome to my world. I am an ordinary wife and mom who has been extraordinarily blessed by an amazing husband and house full of beautiful children. My prayer is that you will be somehow blessed by our family's story. It is a tale of God's grace and forgiveness...His loving kindness and patience with us His children as we strive & struggle everyday to bless His name with our lives

Thursday, September 11, 2008

New Shoes & Prayer Needs








Well I’m not keeping up with this new blog thing. I plan to work on that habit and post more often. The children are all adjusting well to starting public school. Even my three 1st graders seem to be surviving. I think starting 1st grade is so hard for most kids. It’s a long day for little bodies. They do come home exhausted. I thought we’d escape for awhile the “back-to-school” clothes shopping expense. But all the grade school kiddos have something called “P.E.” that requires tennis shoes …..I was shocked to discover the tennis shoes that hadn’t been on kid’s feet since we switched to sandal weather last spring, are all too small this fall! Seven spanking new pairs of shoes later and I sadly realized summer was over. Summer means sandals. Sandals mean I don’t have to find eight pairs of socks every morning for little feet. Here is proud Berhanu and Josiah off to 1st grade with their brand new sparkling white tennis. Those shoes glow they are so pristine and new…for one day anyway.

Maggie is our other 1st grader. She loves going to school and has been very sad to be kept home the last two days. She is having problems again with her feeding. Maggie is G-tube fed and usually on a pump overnight with food/formula and bolus (gravity fed a tubes of food/formula) fed during the day. At times she has so much reflux and retching that she can barely keep anything down. She is on meds for reflux. This is a common problem with people like Maggie who don’t eat by mouth. Our bodies are not made to function by being fed through a tube in our stomach. We’ve had to keep her home from school to try to get some calories in her. She’s starving and weighs a little less than she did a year ago. I have spent hours on the phone with specialists and made the earliest appointment available to see her doctors at Children’s Hospital in Seattle……in December. (She is on waiting list in case of an earlier opening) We have had some success feeding her “real” food blenderized in our Vitamix and feeding her tiny amounts every 20 minutes. That is what I’ve been doing the last 48 hours. She looks better, eyes are brighter and she seems more comfortable. By “real food” I mean regular healthy food made into a liquid rather than the specially made canned formulas created to sustain life of those people not able to eat by mouth. Here is Maggie in her temporary wheelchair and her new shoes which are her braces called AFOs. Maggie’s AFOS cost $1343.52 which is quite a bit more than it costs to buy shoes for the entire rest of he family. At least our portion the co-pay was only $309.60 after insurance paid their part. Update on wheelchair saga…It is now 18 mos since we started trying to get her new chair. She grew out of her old one last spring and had nothing. But God answered our prayers and provided this one for the time being. This chair was left out in a field for four years to rust and the padding rot off. Someone brought it to the Dept.of Disabilities in case it could be donated to needy person. Unbelievably Mike was able to fix it to work for Maggie…for now. She really needs her new wheelchair! I call every week on Monday to cry to the wheelchair place responsible for getting the paperwork maze completed to okay her new chair. This is the company that will build it once our two insurances have agreed on things. This week I called to harangue the “wheelchair guy” only to find out he doesn’t work there anymore. For some reason I wasn’t surprised. Ugh. What to do?! Please pray. I feel I might become a terrorist over this. Mostly please pray that we can stabilize Maggie’s feeding issues very soon and she can start gaining weight.

Solomon started preschool today. His morning was total and complete boundless joy. The child never stops moving. He doesn’t ever walk, he runs or skips or hops. Sometimes I feel impatient trying to hold the hand of a bouncing Tigger boy Solomon across the parking lot. Then I think how silly of me Lord. We never thought this child would walk; let alone run, jump and bounce! What a miracle he is. They all are. Thank You God for bringing Solomon to our family and for healing Solomon’s spine. We prayed for his life to be saved, and really barely asked for divine healing of his spine. May we never forget what You can do and Your extravagant love and delight in giving good gifts.

New Years, Birthday Happenings, and Travel Plans postings to come soon. Thank you very much for praying for Maggie!

Julee

3 comments:

MP said...

How beautiful and precious Maggie is. She is locked in my heart and in my prayers.
Not only are the new shoes sparkling white I bet they make all of the run faster too!!! Speed of light!
Blessings on you and ALL of your family.
Malissa

johnyzgurl said...

Praying for your beautiful, precious family!

Janice said...

Hey Julee!
I find myself really dreading the cooler weather for no other reason than having to find four pairs of socks for 4 little feet every morning. Don't know how you do it with more!!! Blessings & prayers from our family to yours.
-Janice, Rod, Bailey, Ben, Ethan & Emma