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 ;)

Glimmers

In the sleepless nights this week I have prayed for some glimmers. Just small signs of improvement from God to show us MG is improving. And thankfully we have started to see some. Her pain is less constant, she is up and down. Although still is pretty awful when we have to take her potty or move her or her Motrin wears off.  Distraction and playing seem to help and baths, lots and lots of long warm baths. I even sat her in her high chair that she used with her cast and she lasted about 2 minutes, but it's a start. But, after 3 nights of almost no sleep-she finally slept last night-praise God! I went to sleep at 7:30, and she was only up for a little over an hour in the middle of the night and two hours the night before. So we are beginning to see some "glimmers."

Because this was such a huge surgery (including broken bone being exposed) and she isn't quite 6 weeks out yet she really is still healing. So our biggest prayer now is still for pain. She has slightly moved her left knee-she will have to do this on her own, we are not forcing anything right now. That stiff knee is connected to the femur, which is connected to the hip, so that is why it's so painful. We try and make it a game and ask her to swing her leg ten times while we count.

So, this is just going to be slow and I feel like we are starting to come to the reality of the hugeness of this surgery that this is just going to take time to heal, to recover and regain all her strength to walk again.

Summer starts in 4 days. Loftin and Lucy are so excited about summer and they have been such troopers through all of this. They consume our hearts and lives and energy just as much as mg. I have had to miss out on some this spring-Lee and I tag teaming soccer games and trying to help with end of the school year things, but much of that has fallen by the wayside. But Loftin and Lucy understand, they are used to all we go through with MG and for that I'm thankful. But I know at times it's hard for them to see her hurt and how she requires a lot of attention, especially right now. Lucy moved to sleeping upstairs with Loftin this last week since MG was so loud at night and they are having fun together :) I hope to spend lots of time at the pool, this is a great place our PT said would help Mary Graham get back range of motion.

I'm praying for supernatural strength and healing over the next month and through the summer. God never ceases to amaze me and I know it may be hard at times (you can specifically pray for my patience), but He's got MG in his hands and I know he'll be with us with through this journey and faithful like he always is.  Thanks so much for continuing to pray, we are so thankful for the little improvements so far and pray for more and more glimmers.

About the same

Mary Graham was up most of the night in lots of pain. I spoke with the nurse and this is fairly normal with the kind of surgery she had and being casted for 5 weeks and I have her on big pain meds. She is having some moments of contentment, but trying to move her or take her to the bathroom is excruciating. She says, "please don't hurt me when you pick me up."

She pretty miserable and says her back hurts and her knee (it is still bent like it was in the cast). This is some of the worst pain I've seen her fight in her 4 years and through all her surgeries.

Please continue to pray for for healing and some pain relief to come soon. It's hard knowing how to help her right now and just being patient for her to get back to walking and moving. Thank you for all your encouragement and lifting us up. 

It's off

The cast is off and she is in tons of pain. She is crying off and on about her knee, back and hip hurting. She asked to have the cast put back on and says she can't move her leg.

The harness will be on for at least 4 weeks all day and night. No walking or PT for a month or so.

Please continue to pray for her pain and the long road ahead for all of us. 

One night more...

Just one more night in the cast! MG gets it off tomorrow morning. I feel like this day has been in slow motion waiting for tomorrow to come. We are excited and anxious. 

She still isn't sleeping great, it's getting hotter and she desperately needs a bath. But we have made it through what I feel like is the first giant step in this unexpected hip surgery this spring. After she gets the cast off she will get a Velcro harness, and will most likely wear it all the time for another month. 

MG is still very happy (and a little bossy ;) these days. But she keeps saying, "when I get my cast off I'll just be able to walk and swim!" She wanted to just hold her bathing suit last Saturday and put on her flip flops because she saw Lucy wearing hers to go swimming with a friend. So I pray her sweet spirit will continue even if she can't do all these things right away. But I believe that her determination will drive her.

 Because the doctor cut and turned her femur to get the ball in the socket, her knee and leg now face forward (her left foot and knee were turned out before) and she will now need to learn to walk with different muscles. The purpose of this surgery was to stablilze her hip in the socket and prevent early arthritis. 

I have no idea what to expect as far as her strength or pain and when she will be allowed/able to walk again.

But I do know that God is faithful and that she's a pretty amazing 4 year old and it may be a slow summer, but we pray she gets all her strength back. So, lots of unknowns-I have a hard time in the unknowns of life-but I'm learning to trust and hang on and I get a front row seat to watch God's hand a work.

We covet your prayers, your love, your support-I am constantly overwhelmed by it all. 

Pictures to come tomorrow!!

Bubbles and a body cast

How can anyone be so happy in a body cast? We are on week four and I see the light at the end of the tunnel. God is good, thanks for continuing to pray.