Her storm

Who kept Noah safe from harm?

Who brought him safely through the storm?

Who kept his promise? Yes it's true

Who does just what he says he'll do?

Yes, God's the one. And guess what's true?

Little one, in the storm, God cares for you.

These are the words from one of my favorite songs on the Rain for Roots album for kids. This song has always reminded me of Mary Graham and I have prayed she would know God's promises and love through her disability, her pain, her "storm."

Last night we were able to here Sandra Mckraken and the singers of this album live in concert. Lucy and MG loved every minute (Loftin mostly talked to his friends:). But that pic is MG singing and snapping to this song. She was the happiest I've seen her in a long time. 

PT is going well, it's hard for her. She was teary at first. But she's starting to move more and overcome some fears of pain. She has lost a lot of muscle and strength all over, but slowly I see her regaining it. She's even talking more about when she will walk again and getting her drive back. Fear has been a huge hurtle for her to overcome after this surgery. Sleeping is still not very good. She cries off and on in pain at night. And the mornings are rough because now she's really working her muscles and she's hurting in the morning. We look forward to the day when she can really rest and sleep soundly. 

Praising God for moments like the picture above and baby steps towards walking again one day soon.

 

Little update

Mary Graham had a follow up with the orthopedist this week and he was concerned about her pain and stiffness 10 weeks out now from surgery. She has improved in small ways, but he wants to see her again in a couple weeks for an MRI or CT scan to make sure the hip and femur and in the right place. Mainly his concern is that she has not yet straightened out her leg or hip, it's still up in a frog position. But if she shows good progess these next few weeks this won't be necessary.

PT began this week and she is seeing Daphne, her same PT from school this year-so that's helpful. They took it slow (me and big kids left her since we know she'll do more without me there). It went well and we have some things to work on at home. And we went to the pool today and that's so good for her.

Sleeping is not good right now, she is completely out of her harness so moving in her sleep is painful. 

One improvement we have seen is being able to sit in her booster seat again at the dinner table, she was so proud of this. 

And she went to vbs this week and spent time singing and making crafts and hanging out with her friends-she loved it, it was exhausting for her, but so good for her little spirits.

So, prayers for progress, less pain and sleep. Grateful for your prayers!

Healing

Healing is something that takes time. It's slow. It takes patience. It's something you can't see, you almost have to look back to realize it is happening. 

Slowly Mary Graham is making progress. The pain is still there, she is still stiff and hurts to be moved. But she's getting better.

The beach was so good. It was hard at first, the car rides were painful for her, even putting on her bathing suit was painful. But gradually each day got better. Her nights are better too. We left her harness off much of the day. She hurt off and on, but we just kept going (with a little oxycodone to help) and took her to the beach, she sat in a little pink chair and played in the sand, we carried her in the ocean and helped her kick her legs the pool. There were lots of tears at first, I believe much of which was fear. But the best part was that we saw her little spirit begin to return. She laughed more and wanted to move more and realized for herself that she wanted to do what everyone else was doing. One of her best friends happened to be there and MG watched her run and jump and I think that willed her to want to do more.

And now that we are home, her little will and spirit is even brighter. I had almost forgotten how this was taking such a toll on her mentally even as much as physically. I know the physical rehab is still going to be tough, she starts PT next week. But we are so thankful that her smiles and laughter that have returned. Praise God for hope in the midst of all of this. Thank you for being so faithful to pray. 

She is healing and I can see it now. 

Sustained

Mary Graham slept better last night-we gave her oxycodone and was up until almost midnight, but then she tried sleeping in her bean bag in her room and she slept until 5:30, and so did we! Lee told me he took 2 Tylenol PMs around 10:30 last night just so he could sleep better (he's in a bit of a fog today ;) but that sleep made us all feel much better today. 

Anyway, thank you for praying....we are feeling sustained. At times it is so consuming right now and I don't like feeling so needy at times, it seems somewhat self absorbed and I know we are just anxious for things to return to normal. But I get to see God's love and mercy through his people. You all are lifting us up and it's humbling when I know you have full plates also.

God is providing and we have much to be thankful for. Her days are getting a little better and we are planning to head to beach tomorrow for several days. Not sure how this will go, riding in the car that long, but at least we get a change of scenery and hopefully she will try the pool. Although she says she doesn't want to put on her bathing suit because it will hurt her leg :( Praying we can make some progress there with her pain and stiffness and she will have fun and not be so fearful.

Thanks again for your prayers for our family! 

Prayer request

MG has taken some steps backwards and is now not sleeping well at all. She is up, crying most of the time, from about 9:30-3:30, for about the last 3-4 nights. She says she's hurting, but there is only so much we can do to help her pain with meds and trying to change her position. It's almost like some of her pain and restlessness is when she's not fully awake, like night terrors. 

Needless to say, we are exhausted and feeling a bit helpless. I'm a wimp and don't function well on little or no sleep. Would love your prayers for her to sleep and continued for her pain. She's doing pretty good during the days, seeing some improvement, just still up and down. The doctor said with her muscle condition it's just going to take her longer to recover. 

Loftin came home from Alpine today and showed me his verse from the week in Isaiah 40. God knows what we need. Thanks for praying!

27 28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

The Best

This is the best doctor, he has been Mary Graham's Pulmonologist for the last 4 years and yesterday we had to tell him goodbye....he is moving to Florida to work with children there. 

He is the kind of doctor that I could text in the middle of the night, been a liaison between CHOP and here, always had great compassion for mg and our family and told me yesterday though tears that when we first brought MG to him at 4 months old, he worried about her a lot and that things looked so grim. But he said she has done amazing and he doesn't worry about her in that way anymore. She is a miracle.

Those were just the words I needed to hear yesterday-she has come so far and this season is hard, but there will be brighter days. She had X-rays and her lungs have never looked better either. This is so encouraging.

She smiled and laughed with him and asked why we were crying ;) He will be missed, I'm so thankful for God putting him in our lives at just the right time.

Making progress

Summer has begun and we were able to go to the lake with my family this weekend-it was a such a nice change of scenery and so helpful to have lots of people to help with MG and cousins to entertain her. It's like therapy for me to go there and be still, eat good food, enjoy the sunshine and sit on the porch and talk.  And we started seeing more improvements in Mary Graham. She even did a couple of slow boat rides.

She has started asking when she will be able to walk again and I know she is scared. Yesterday she said, "I can't wait to rip my harness off and run around, will I be able to do that again Mom?"
The pain she has been through these last couple months has been and is still intense. And she is still healing and working through the stiffness. She has some really good long stretches of no pain where she's happy and plays, but still having some pretty hard times of pain also, mostly in the morning when she's stiff and sore. She is sleeping much better-although last night was not good. It's almost like she is having nightmares about her pain because she will whine and cry without waking up. And we are starting to let her sit without her harness on so she will start moving her left leg and hip more, she's actually suppose to leave it off for 6-8 hours, but she hasn't lasted that long and always asks to put it back on.  The pain is different now that she's moving her hip a little bit-it's kind of hard to explain. But we are very thankful for the progress she has made and pray for more improvement over the coming days and weeks.

I'm so glad things are slowly looking up. And we are definitely having some joyful times and those are so refreshing. As I have looked back over the last few months, I have decided I'm not a very good sufferer (is that even a word??). I can be whiny, complain and just annoyed that this is not my plan and I would much rather be enjoying the summer in a different way. Our pastor said the other week, "it's often that we look at our lives and things aren't what they ought to be, or what we had envisioned."

This year has been a trying year for many reasons in our family. I know and believe with my heart that God is in all this, he's sovereign and in control, but my mind has a hard time catching up at times.  And i'm very forgetful of these truths.  At times I have been bitter and just sad for her and all that we took away from her with one surgery. I hope and pray she will get it all back, but it's hard to watch and wait and wait some more. I read something the other day about lamenting. My prayers these days have mostly gone something like "help Jesus." And I know he hears. The Psalms are full of laments of those crying out to God-he wants us to. That's when we have complete dependence on him. Then I read these verses today from Hebrews 5.....

"During the days of Jesus’ life on earth, he offered up prayers and petitions with fervent cries and tears to the one who could save him from death, and he was heard because of his reverent submission. Son though he was, he learned obedience from what he suffered." 

It's all a learning and growing process. And Jesus truly understands. And that's the greatest Truth. 

Thanks for continuing to pray.

We feel loved and lifted up so much! 

 Here are some pics of the last week or so. 

MG has started wanting to dress up again-a good sign she's feeling better, a bad sign for me to have to change her costume 15 times a day ;)

Lake time

Relaxing

We dropped Loftin off at Alpine Camp for Boys for 10 days-I miss him so much but know he's having a blast

Car rides have been very painful, but we decided to try her old car seat (instead of the one we have been using for her cast) and she fits! And this may be the answer to less pain in the car.

This was MGs first real outting. About 30 mins at the library. I plopped her on this huge dog and Lucy read to her-sweet sister moment ;)