Strength and Grace

Lee and I leave early tomorrow morning with MG, have appointments on Monday with Dr. Campbell and anesthesia. Then, the surgery will begin early Tuesday morning, I imagine the surgery will start around 7:30 am and last around 6-7 hours. This week I have just been planning for next week, making travel arrangements, and plans for Loftin and Lucy. Please pray for them while we are away and all the grandparents, family and friends helping take care of them. We are so thankful so many are helping us and have such an awesome support group. Also, we are hoping to stay at the Ronald McDonald House, however, it has been very full, and we won't know until we get there if there is a room available. They will be able to get us a low rate at a hotel until it becomes available. So, pray that this all works out. I imagine we will be "living" at the hospital most of the time and I know God will work out all these details.

Someone said to me the other day, "You seem so strong going through all of this." Really? Honestly, i'm weak, very weak at times, often gripped with fear and a pit in my stomach. But as Psalm 121 says, "My helps comes from the Lord." I have thought much about strength lately, probably because I have felt so helpless at times, and that is the only way we will get through this, with the kind of strength that can only come from God.  In 2 Corinthians, "My grace is sufficient for you, My power is made perfect in weakness." These words have been at the forefront of my mind. God's strength is the only strength I have.....when I am weak, he is strong. He has gently led us through this year and right up to this point, step by step, never forsaking us. We have felt His strength, afterall, His strength is perfect. So, even when I'm weak, I am confident in these promises and know He wants His best for Mary Graham.

We are so grateful that God has brought us to this point. Thank you again for praying us through this, I know so many are going through trials and we thank you for being so faithful to pray for Mary Graham. God loves to hear the prayers of His people and pour out His compassion and mercy. Please pray for Mary Graham, the surgery, her doctors, and her recovery and all that's in between. We covet your prayers and thank you for loving our family. I will update, so check back soon.

Psalm 121

 ¹ I lift up my eyes to the mountains—
   where does my help come from?
² My help comes from the LORD,
   the Maker of heaven and earth.
 ³ He will not let your foot slip—
   he who watches over you will not slumber;
⁴ indeed, he who watches over Israel
   will neither slumber nor sleep.
 ⁵ The LORD watches over you—
   the LORD is your shade at your right hand;
⁶ the sun will not harm you by day,
   nor the moon by night.
 ⁷ The LORD will keep you from all harm—
   he will watch over your life;
⁸ the LORD will watch over your coming and going
   both now and forevermore.

Happy Birthday MG!

To my sweet Mary Graham on your first birthday.... You are "fearfully and wonderfully made" and God has taught our family more through your life and I know He has great plans for you. Although you will face some challenges, I pray that you will be a light and grow to love the Lord. Jesus loves you so much and I'm forever thankful that he chose Lee and I to be your parents, it is a privilege. You are a blessing from above!

Day 4~Perspective

"You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the Lord forever, for the Lord, the Lord is the Rock eternal." Isaiah 26:3-4

Today was our last day of testing and meeting with doctors this week before Mary Graham will have her VEPTR surgery on March 13th. We are so relieved and thankful. I have prayed for peace and a greater perspective of what's to come with this major surgery MG is about to experience. This week has been full of so much, it's hard to even put it all in words....but even in the midst of the fear and uncertainty, today seems to have brought the most perspective and peace.

These details may be more than you wanted to know, but it helps me to get it all out and process it, and I appreciate you taking time to read.

First we met with Dr. Oscar Mayer (yes, that's right, his great grandfather is THE Oscar Mayer), our pulmonologist. His most concern is with MG's right lung. On the CT scan it showed to be partially collapsed and one of her brochus tubes appears bent (this is what connects the trachea to the lungs). She has some shallow, labored breathing, which we have already been aware of. He believes this is because her chest wall and spine are being so contorted because of her scoliosis. This was concerning to hear. Dr. Mayer wanted to do a bronchoscopy to get a better look. This would mean staying longer and having this procedure done Friday under anesthesia. However, they performed a pulmonary function test where MG was sedated and tested her lung capacity and breathing in and out and this was normal. He was actually a little surprised to see she did so well with her breathing and that she has not had pnemonia or bronchitis over the last several months with her lungs. God has totally protected MG and kept her healthy, he has heard our prayers. After that he decided to wait until the same day as her veptr surgery to do this procedure. We were so thankful for this and not having to stay longer, since we will be back in a little over a week anyway.

Next, we were able to meet with Dr. Campbell, our amazing orthopedist. It was all I could do to keep myself from running and hugging him and thanking him for doing what he does. He cares so much and is so compassionate. And if it weren't for his development of the veptr MG would not have any options. The veptrs will improve her quality of life-I'm forever thankful to God for sending us to him.

They worked us in today and we were able to ask lots of questions. He went through the steps of veptr surgery and the risks. Although there are great risks with this surgery, he said not doing the surgery would be a bigger risk. He will place two veptrs, one on each side of her spine (called bilateral), with 4 incisions. The veptr rods will open up her ribs and allow for her lungs, especially her right one, to develop and grow as she grows. Also, it should begin to slowly straighten her spine. Every four months we will return for adjustments of the rods. Dr. Campbell felt like she looked healthy and was just big enough to handle the surgery. I asked him his opinion (I ask this to just about every doctor we lay eyes on) about why Mary Graham has these abnormalities. Of course I know only God knows her the best and what her future holds, but it's hard not to seek out the answers myself. Guess it's my way of feeling a little in control. Dr. Campbell said children can have certain conditions or diseases, but they present very differently in each child. He said she was growing and a bright little girl and that is very encouraging to see.

So, after this week, I can begin to grasp what is to come with the veptr surgery and I am able to see this amazing team of doctors come together to find the best treatment plan for MG. The timing is also very important, so to be proactive and not allow her scoliosis and lungs worsen anymore. So many praises and things to be thankful for and the clarity we have been given.

Mary Graham will turn one on Sunday-it's hard to believe this year as I look back. There will be lots of challenges over the next several weeks, to say the least. God is here though, He has made our steps firm and brought us so far and I believe he will continue to, He has promised to. Don't think I've really been climbing that mountain I spoke of before this trip, I have been carried, and that has given me new perspective.

Thank you, thank you for continuing to pray for Mary Graham and our family. I've been so humbled to know so many are praying for her. We are so grateful for your love and support as this journey continues.

Day Three

Not too much to say about today, it was a nice change from yesterday. We met with the general surgeon who will be in on MG's surgery. He was so nice and we could see the CT of her chest and spine. He will be there to help assist Dr. Campbell, the orthopedist, during her veptr surgery. Just another member of the team. One encouraging thing he said was that Mary Graham's size was fine for surgery, although small, he said she seemed healthy and not malnourished like some children can appear. So I thought this was a huge praise!

We were able to rest some today, Mary Graham has not quite been herself, but I'm sure she's just getting back to normal after yesterday. Tomorrow we meet the pulmonologist (also on MG's team) at 8:00 and then have a 4 hour pulmonology test at 1:00. She won't be able to eat or sleep after 7:00 am, so pray that goes well. She will be sedated for that test. Also, Dr. Campbell was able to work us in tomorrow, we weren't actually going to see him again until the day before her surgery, but they worked it out, so I'm so thankful for that.....lots of questions to ask him and now he has her MRI and we can discuss that. So, after tomorrow, we should have much more of an idea of what to expect when we return in about a week for her surgery. Please pray for a smooth day tomorrow, as it is also very full and for peace and trust in God and this plan for Mary Graham as we get very close to her surgery. God has blessed our days here already, thank you so much for all of your prayers.

Day Two

Today was long. MG had her MRI and CT scan that lasted over 4 hours under anesthesia. She did really well, with just a couple bumps with her having some breathing issues during the procedure, but they were able to get those under control. She recovered just fine and she has been pretty content for the remainder of the day. Praise God that today is behind us and as a sweet friend reminded me today from 2 Corinthians, "My grace is sufficient for you, My power is made perfect in weakness." So thankful for this promise, because days like today are hard and His grace carries me through every minute.

Tomorrow we meet with the general surgeon, should be helpful to give us insight into the veptr surgery. On a side note, CHOP is the most amazing place-have been so impressed with everyone and the quality of care they give each family. This is just confirming that we are in the best place for Mary Graham's treatment.

Thank you for praying us through today!

Day One

We made it safely to Philadelphia, had nearly perfect travel, it was so smooth. Mary Graham is feeling good and has been an angel. We have been walking around some and exploring this city and the hospital that we will get to know very well over the next coming years. Prayers are being heard and God is walking before us.

Today we had our first appointment with anesthesia to prep for her CT and MRI that will take place early tomorrow morning. Although we don't know the exact time yet, it will most likely be around 7:30 am. Please pray for these tests. They will take about 4 hours and she will be under anesthesia the entire time. I didn't realize they would take quite this long. We ask you to pray for no complications during or after the procedure, for no unusual findings, and for the results to give the doctors better understanding of MG as they prepare for the veptr surgery.

Pray for our hearts and minds to rest in Him and not in the circumstances around us. Thank you again for lifting us up!

"Yet I am always will you, you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.....But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds." Psalm 73:23, 24 and 28

Mountains

^"The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights." Habakkuk 3:19 

Mary Graham is doing pretty well these days after battling the stomach bug and double ear infections, all that come with this time of year, but she is on the mend. We have been back to the pulmonologist and dietician this week. She has gained about a pound since the end of Novemeber....so not as much as we had hoped, but she's been through hip surgery and lots of sickness. We are making some changes in her diet (all pediasure and no more formula) to hopefully put as much weight on her as we can. The challenge with children and babies with scoliosis is that they are working harder to breathe and therefore, burn more calories, and since her spine is so malformed it really makes an impact on her overall health. We are continuing to pray for improvement in her growth.

Now on to the next several weeks.

I feel like I'm at the bottom of a huge mountain and about to start walking up. Finally I have gotten my act together and have all our childcare, schedules, traveling, appts, etc worked out (I think). Have been avoiding all of this, just enjoying these normal days. And God has truly allowed us to enjoy this time in between surgeries. I have been able to focus on the present and really not think about what's to come and this is very hard for me, so I know the peace is only from Him.

However, we leave in a week for CHOP, return home for one week, then back again for her surgery... reality begins to set in. As I have planned all the logistics for these events, I hold them loosely. One thing I have definitely learned this last year is that the Lord will orchestrate our steps. We will trust in Him with what is to come, His plan will prevail, it can not be thwarted, and it is best. I have faith that God will show us great things, but it's still so hard not to worry. Pray our hearts and minds to be prepared for what is to come. It may look like a huge mountain now, but God can move mountains and as He says in Habakkuk, He enables me to tread on the heights.

Here are some specific prayer requests that I ask you to pray over the coming weeks....

~Mary Graham to stay healthy 
~Mary Graham's growth and development (we just started at The Bell Center for more therapy - it's such a wonderful place and so glad we have it here in our hometown)
~Testing the week of Feb. 27-March 2nd at CHOP (CT, MRI, pulmonology testing, dr appt)
~VEPTR  spinal surgery on March 13th at CHOP (5-7 hours long)
~No complications during or after the spinal surgery - infection is a major complication in many children who have veptrs placed, so pray for no infection or big surprises during the surgery
~Loftin and Lucy to adjust well to us being gone for long periods of time - although I'm sure they will be enjoying all the time with grandparents, aunts, uncles, cousins and friends :)
~Logistics of traveling and schedules for our family and those helping us
~For God to sustain Lee and me as we go through this with our baby - it can be very hard as parents

Thank you for your faithfulness to pray. God has poured out his blessings on us and through you.  I plan to update as frequently as possible while we are gone on the blog, so check back soon.
love,
Jen