Refuge

(Had just finished up this post today when Mary Graham woke up this afternoon with fever, please pray for her and that this is not a sign of the infection returning. Up until now she had been great-see below)


"His delight in not in the strength of the horse, nor his pleasure in the legs of man, but the Lord takes pleasure in those...who hope in his steadfast love." Psalm 147:10-11


First of all, I am so grateful to my friend Sarah Beth for setting up the prayer chain for Mary Graham and our family. MG is doing great....so far so good.....no fevers, pain, etc that would indicate infection. We are about 12 days out from being off the antibiotics and she is happy and eating great. The doctors said it could take up to three weeks for the infection to present itself again.....please keep praying for her and her upcoming surgery on Nov 13th in Philadelphia. Your prayers are being heard....she is doing so well and there are days when I know His hands are carrying me through because of your prayers. People ask what they can do to help us at times and prayer is the one thing I am most thankful for.

Last week, after feeling a little at a loss about getting MG some kind of gait trainer or equipment that would help her move better, I prayed for God to intervene, feeling like my hands were tied (getting assessed and getting this type of medical equipment is a process, a long process). But, I found something in a magazine one night that I thought would work for MG. She is now 20 months old, and I am her means of mobility, I move her when she wants to move. At her age she needs to be able to move and explore and she doesn't have the strength or ability to do that right now. So, after discovering this little chair, called a "ZipZac" chair for little ones who can't walk (it was invented by a family with a little boy with spinabifida, named Zac). I emailed my PT at the Bell Center about it....she called the company that day and they mailed it to us within a week to borrow two months for MG to try. They are rather expensive, so it is great that they let us borrow it first. She is still getting used to it and I'm so thankful that God orchestrated these details so quickly.

Here are a couple videos of her, she's gotten even better since these were taken. She has never been able to play with the magnets on the frig independently, she was so excited.


IMG 0535[1] from Jennifer Sheppard on Vimeo.







IMG 0529[1] from Jennifer Sheppard on Vimeo.


     The "ZipZac" chair is basically a tiny wheelchair. We are thankful for something to help her move around and are continuing to work with her on standing and taking some steps. I was thrilled to get the little chair but it was quite a dose of reality seeing her in it for the first time. When I was pregnant with MG, never would have I pictured my 20 month old in something like this, it is a lot to take in some days. We pray that she will continue to gain strength and walk one day.

      Lately I have been reading a book a friend recommended called Sweet and Bitter Providence by John Piper...it's about Naomi and Ruth and their journey through a difficult tragedy, but then God's grace brings them out of a bitter providence, as he orchestrates their steps. Naomi is so overwelmed by God's bitter providence, after her husband and sons have died, that she can't see the signs of hope as they start to appear. She believes in God's sovereignty, but is not able to see his grace revealed. As Piper puts it, "she is unmoved from her sorrows." Ruth, on the other hand, has faced the same bitter tragedy and left her family and Boaz tells her, "the Lord repay you for what you have done....the God of Israel, under whose wings you have come to take refuge." Piper goes on to discuss the beauty of Ruth's response to her tragedy....she took refuge in the Lord and was able to receive his grace, mercy and strength during this time. She has "humble confidence in the mighty and merciful wings of God." Sometimes I think I am more like Naomi, but I want to be more like Ruth....to just take refuge in the Lord and allow Him to pour out his mercy and grace and not let bitterness of circumstances cloud these. He wants us to find refuge only in Him and Him alone....I know I try and find it other places. After reading the story of Ruth again, this book really opened my eyes and God gave me such a sense of hope, a renewed hope in Him and his love and that He is in the small details.

I love what Piper says in the end, "With Ruth and Naomi, let us fall on our faces, bow before the Lord, confess our unworthiness, take refuge under the wings of God, and be astonished at his grace."

Thank you always for praying.

Antibiotics

We are stopping Mary Graham's antibiotics today, the doctors feel like this is the best plan and we will now wait and see if the infection returns in the next couple weeks before we go for her surgery at CHOP. Just took her to have bloodwork and levels checked so they can keep a close eye on her these next few weeks.

Please pray for NO infection to return! It's a little hard taking her off....they are like a security blanket to me.... keeping her healthy and feeling good. Now we will hold our breath and wait.

Thank you for your prayers!

Invisible

"Many of our prayers are directed toward the quick and easy solution. Long-suffering is sometimes the only means by which the greater glory of God will be served, and this is, for the moment, invisible. We must persist in faith. God has a splendid purpose. Believe in order to see it." ~Elisabeth Elliot

I love this quote above and it seems to describe our circumstances with MG....one minute I look at her and see how much of a struggle it is for her to just sit or stand up and the next minute I see how far she has come in her little lifetime. Persisting in faith is hard when things seem to be moving in slow motion....but thankfully it's not on my own and I believe in Him and His plan. One day it will all be more clear, less invisible. Most days God gives me such peace about her and her life ahead and then other times, even when she's doing so well, I'm thankful, but also worried about what's just around the corner for her. God is meeting me in these places. And even in the midst of these places, life goes on and we have had so much joy after the darker days, like when she was sick at Children's. School is off to a great start for Loftin and Lucy and we were able to go to the beach a couple weeks ago. Things have been so normal lately and it's been wonderful.

Right now MG is just full of personality, talking tons and feeling really good these days. And her appetite has improved. This is a huge praise. I think she must have heard the doctors discussing putting in a feeding tube and decided it was time to eat more :) Her weight has leveled off on the charts and they are still concerned. She needs to grow and be strong, especially her bones and with the rods in her body and to make better progress-everything is connected. We continue to pray that she keeps eating and growing. We do not want a feeding tube that involves more surgeries, more issues. She is also enjoying the Bell Center where she goes for therapy, this was a rough start, she cried all the time. But now she seems to love it. Also, she's gone to Mother's Day Out some so that has been a huge blessing for me. Her teachers are so sweet and loving to her and accommodating to her needs. She seems to be wanting to move more, can stand a little longer and take a tiny step with her left foot if I'm supporting her. Our PT is in the process of assessing her to see if she could be ready for a gait trainer, this is a walker with a seat for added support. I know she would love to be able to move and explore on her own. Every child with MD is different....we pray that she continues to progress and gain strength.

So what's next? Right now she is still on the mega antibiotics for her infection. She may come off of them just before we go up for her surgery. Please pray for no infection to return or resurface. We are going to CHOP in Philly for her next expansion surgery November 13th, it's just around the corner. This is where is gets kind of complicated, it seems like we may not have seen the end of the infection. Hopefully, that will be all it is, an expansion surgery. Back in July, it was so quick and easy. However, once she is in surgery they may discover the infection and it could result in rod removal, a wash out of the infection, more antibiotics, etc. But we are praying that the antibiotics have knocked out this infection for good and that her broken ribs have healed well. Please pray for a successful surgery, wisdom for Dr. Campbell and for God to go before us and give us peace no matter what direction this takes.

Thank you for your faithfulness to pray and love our family and we pray that God is glorified through it all.