Wednesday, August 21, 2013

Lots of "firsts" this week....

First day of second grade for Loftin....



First day of Kindergarten for Lucy (and she never looked back, she loved it)



First day of walking together to school....


 Our wonderful new teachers....



And, this is huge....Mary Graham's first time to stand up without holding on to anything....I snapped this picture of her buckling her babydoll in the stroller. She didn't even realize she had let go of her walker to do this. Praise God for this little miracle....


First time dressing up, she loves the princess shoes...




Tuesday, August 13, 2013

Gratitude

Here's the long version of last week in more detail....Got to Philly Sunday, good travel, great weather. Unfortunately, we didn't get in Ronald Mcdonald House, so we stayed in the city. Got to do some sightseeing....my flip flop broke and I walked 10 blocks barefoot until we found a store to by some $5 flip flops...think they are my favorite shoes now :)

Monday came and we still did not know if we would see Dr. Bonnemann, but I felt like God was going to work it out. I called first thing and left a message. Friday I had been emailing anyone I knew that could have a connection to him. I even emailed Dr. Bonnemann himself, we have corresponded some already and he said he would be at CHOP and hoped to meet with us. So, I gave him my cell number (probably not the right etiquette, but I couldn't forsee being in the same place and not getting a chance for him to see MG).

We walked to Starbucks and neurology called. The receptionist said we could see Dr. B any time. So we scheduled for 2:30 that afternoon after our other appointments would be finished, or so we thought. When I sat back down to eat, I told Lee, "we are in to see Dr. Bonnemann." Then MG looked at me and said "we should pray." Not kidding....so we did.

Off to CHOP for first appointment with anesthesia-it lasted almost two hours. Mainly because MG had started coughing and had been the night before. So the actual anesthesiologist came to check her out. He thought her lungs sounds "hyperactive" and albuterol treatments before surgery would be a good idea. Well, guess who left the albuterol inhaler and chamber at home...me.So, I called and emailed two doctors back home and got those called into Walgreens. We'd just run by and pick it up later that day (well, it turned out to be after 6:00 before we left the hospital and two different Walgreens later to get it all filled). And the anesthesiologist basically said he thought she would be ok, but it was possible the surgery could make her more sick and she could possibly end up in the ICU with pneumonia on the ventilator. I love it when they are so honest.
But as you know, God kept her safe...I was so fearful...and she went through surgery beautifully and took her time to recover on some oxygen. Dr. Campbell only expanded the rods 1 cm each, she can't handle much more than that with her history of broken ribs. So, she is recovering really well. We are so thankful!

After that appt on Monday, we headed to see Dr. Campbell at 1:30 and he was very backed up with appointments (meanwhile, MG is done...she is worn out from exams and bloodwork). So around 2:15 I run upstairs to neurology to tell them we may be late and they say you are the only patient Dr. Bonnemann is seeing today and he has to leave at 3:30 to catch the train. What?? the only patient.....I said, "I will be right back with her." So, I run back downstairs and tell Lee and we tell ortho what's going on and they were understanding and Dr. C would just have to wait :). So off to meet the famous doctor :) Apparently he is selective about who he sees, not because he is arrogant or anything like that, but because he is at the NIH now and is very involved in research of very rare, difficult to diagnosis muscle diseases. And Mary Graham fits into that category for sure. So she was "chosen." Not sure if Lee and I felt good or worse about that. But being one his patients will help her so much because he is on the cutting edge of everything to do with neuromuscular diseases, from treatments, to clinical trials and running tests that other doctors may not be able to do.He was super nice and thorough...he asked about her history and knew some of it already. Then he did an ultrasound of her legs, arms and back. To summarize, he believes she has a congenital myopathy, which crosses over with dystrophies also. But some are just now in the last year being able to be studied more clearly. He said it was "perplexing" that she is so weak through her torso and back, but her legs and arms are stronger. Also, many of these diseases can come with facial deformities and she doesn't have this. These myopathies can involve respiratory and cardiac issues. He ordered a huge DNA test that will take 5-6 months to get back (this test can't normally be done at hospitals). And an echocardiogram. We had this done at CHOP on Wednesday and thankfully it was normal. We will continue to see cardiologist to monitor her heart. Also, the respiratory function can decline over time, but that is why we see pulmonology here and at CHOP constantly. The stablity or progressiveness of the disease is not very predictable, especially since some are just now being discovered and every child is different.

So, more waiting. Lee and I both have said that at this point it doesn't really change anything once we know what her specific neuromuscular disease is, but it can give us more insight to best helping her as she gets older. We have learned over the last few years that nothing is truly definitive with neuromuscular diseases and that is where we just put our trust in God alone. And God has placed amazing doctors in our path, and we are so confident that she is getting the best possibly treatment and we are so thankful for that.The most important thing for us is that she is doing very well right now, her veptrs are holding and keeping her chest wall stable and she is not showing any signs of respiratory distress. She is getting stronger and these things are nothing short of miracles and the power of prayer.

God always uses these times to show more of himself to me and lead me to these verses below.

"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from your majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”
Daniel 3

This was the response of Shadrach, Meshach and Abendigo in Daniel who worshipped God, and were about to be thrown into the fiery furnance because of that. Their trust and belief in the Lord blows me away. And after reading this blog (and she puts it so much more beautifully than I can) God showed me this in this last week. How many times am I begging God to answer my prayers....in big and small things. From asking God to protect my children, provide for our family, blessing us.....to asking God to get MG through one more surgery. And I wonder how many times at the end of these prayers do I say, "But even if you do not Lord." Do I still give him thanks? Do I still trust? Do I still believe all He does is good?This is hard. Very hard....I want things to go my way. And this is where Christ comes in....he loves us so much.....He loved us to death on the cross.
Ann Voscamp puts it like this..."Faith is this unwavering trust in the heart of God in the hurt of here. Unwavering trust all the time though I don’t understand all the time....That which we fear might happen to us — might be the thing to produce deep faith in us. Why be afraid of anything — when He’s using everything?"

So, I don't always understand....but I have seen God in the details of this journey with MG so vividly and in other circumstances in my life, he has answered many prayers in miraculous ways and some with a "maybe not, not today." And I have experienced fear that it won't turn out how I want. I will continue to cling to the promises of Him, of His love and hope, not in my circumstances.

This song, Gratitude by Nicole Nordeman, says of prayers

Maybe not, not today
And if that's the case...
We'll give thanks to you, with gratitude
For lessons learned to trust

It takes a choice every second of the day to trust that God is working for the good for MG, for Loftin and Lucy, and for each of us, even in the smallest things....handing it all over to Him. We will continue to pray, to make requests, to beg for healing and for the hurt to go away....and God hears the prayers of his people. But I do want His will, to give thanks in all circumstances, to believe, to trust, to say, "But even if He doesn't." And when he doesn't.....give thanks and know He still loves us and this is His best. We are blessed beyond what we even understand.

Thank you for being a part of Mary Graham's journey and praying for her.

Thursday, August 8, 2013

Going home

We have been without Internet, so haven't been able to update.
MG was discharged late yesterday and she had a good night sleep at the hotel. We fly out this afternoon. She's doing great...just finished eating a huge plate of eggs, bacon and hashbrowns and is singing and playing.

So thankful for her and how well she is doing. Still more to tell about our trip, God's faithfulness and teaching me more about gratitude. Will update after we make it home.

Thank you always for praying!

Wednesday, August 7, 2013

Annie

We have watched Annie about four times this morning :)

MG is doing pretty good, and just now starting to breathe room air and off oxygen. She slept good last night, in some pain and still tired. Still coughing a little bit too.

She has had X-rays already and we saw Dr. Campbell. We will most likely be discharged late today if her pain is under control.

Dr. Bonnemann ordered an echocardiogram of her heart. Some of these muscle diseases come with heart problems. We ask for your prayers for that today.

Overall, she is doing well, we are glad yesterday is behind us and we can be thankful for God's hand in every minute of the day and keeping her safe. Thank you for walking with us and praying. More later...

Tuesday, August 6, 2013

Surgery

Surgery went well, she is still in recovery about to head to pulmonary floor. She's on a little oxygen but has been talking and drinking. More later....thank you so much for the prayers.

Monday, August 5, 2013

Full day



Kind of a lot to tell and my brain is so tired, so i will update more in detail later. We were at chop for almost 6 hours and back to back appts.

Please continue to pray for surgery tomorrow, mg still has a cough and we saw anesthesia and are doing albuterol treatments to try and help before surgery. Pray for the drs to keep her safe under anesthesia and the surgery and recovery to be smooth. I am much more nervous now that she is sick, but I know they will only go ahead with the surgery if she is healthy enough. We have to be there at 8:00 am.

Our visit with Dr. Bonnemann was really good and we are thankful God worked it out. MG was the only patient he saw today. Lots more to share on all that he said after we get through tomorrow.

Appreciate all your prayers for MG.

Friday, August 2, 2013

Good days

" And my God will meet all your needs according to the riches of his glory in Christ Jesus." Philippians 4:1


We have been on the move this summer, moved out June 1st, rennovating our house for about 6 weeks, visiting grandparents (actually, living with my parents for about 5 weeks), beach, vbs, sports camp, art camp and on and on. Mary Graham has probably had the best 5 months of her life. She has been healthy and happy and moving more and more on her walker, wheeling all around in her zipzac and gaining strength and she has even gained 3 pounds since March. It feels like she is finally spending more time out of my arms and on her own-this is a huge praise!

All three kiddos are growing so much, we have had some really good days this summer and have enjoyed all the "togetherness" with each other (with a few disputes here and there...I mean they are 7, 5 and 2 years old...MG is definitely showing more signs of being a 2 year old :).
 So even though chaotic, we feel very blessed. And we are so so thankful for no sickness, hostital stays, and very few doctor appointments.

So now, back to Philadelphia this Sunday and MG will have surgery this Tues. August 6th at CHOP for an expansion of her rods. We ask for your prayers for travel, her surgery and no complications with infection. 

Also, we are hoping to meet with Dr. Bonneman, a very well know pediatric neurologist who comes to CHOP once a month for clinic. It is still not finalized yet, but we hope and pray it happens. We scheduled her surgery at this time because he is suppose to be at CHOP. He specializes in some of the rare muscular dystrophies and we feel like it would be so beneficial for him to see MG. And we have heard wonderful things about him. We ask you to pray for that to work out and for all that he has to say as we are still waiting to get a more definitive MD diagnosis and learn more about the disease and progression.

The verse above, from a bible study I've been doing, has been a such good reminder to me this summer and wanting to be in control of my life, my kids and the meeting the needs of my family all by myself. Really believing that He is enough and meets all my needs and the needs of those I love is hard for me. God is helping me close some of these gaps and focus on Christ being enough. Not just enough, but everything.  
Thank you for praying for us and MG and for the progress she has made. I will keep you posted on the surgery and appointments.   
 Here's a little of what we have been up to in pictures and videos of MG, Loftin and Lucy.....




Getting bigger
 

Art camp


Loftin and Lucy dressing up



Swimming
Eating lots of popscicles


Hanging out with cousins


Playing in the sand





Lucy was in a little muscial "Annie" in Tallahassee

Fun with friends at the park

Zoo train

Lake


This first video was at the beginning of the summer and she has gotten even faster since then and the screaming is Loftin and Lucy in the back ground "loving" each other

The second video is at the library, its been fun to take her walker and zipzac out in public and let her practice some independence (and give my arms a break :)

IMG 0754 from Jennifer Sheppard on Vimeo.