More stuff....more prayer

We met with another orthopedist this week and have some specific prayer requests as the next few months unfold....

Mary Graham's scoliosis is not your typical run-of-the-mill scoliosis that is generally seen in babies of this age in that her back has a significant amount of rigidity - which will make treatment challenging (and probably quite lengthy).   The orthopedist wants to try a cast when she turns six months old. The cast will go all the way up to her neck, around her torso and around one leg to hold it in place. Our prayer is that the cast will help stop the progression and may possibly improve her curve. Please pray that the casting will be successful and for other future decisions about treatments.

Mary Graham's hip sockets did not form properly and there isn't much they can do right now. Later, and I'm not sure how much later in life, she will most likely face more surgeries to correct them. However, the orthopedist said children learn to adapt and, although with some delay, she will most likely crawl and walk.

Genetic testing is still in progress.....we are awaiting the urine testing that will take another couple weeks to point them in the right direction as to Mary Graham's condition or disorder. We continue to pray that her diagnosis is hopeful, treatable and non-progressive. After the urine results, the orthopedist will then schedule the casting. He wants to have more of an idea of her condition before doing that. Even if we don't have a definitive diagnosis after the urine, it sounds like they will have a better idea of what we are facing, and may then do more specific genetic tests (which can take months). We also ask you to pray that no new issues arise with Mary Graham as she grows.

We are also beginning physical therapy. How thankful we are that this is available in helping us to help her. Mary Graham is also a very happy, content baby and this will help her with all she has to face.

As we are beginning to grasp more of the longevity of Mary Graham's treatments and such, it is a overwelming reality to face at times. God has entrusted us with her and we are so thankful for the way he made her. Again, I just try and walk this path daily, not looking too far ahead, trying to let Him go before us. I know he can do immeasurably more than we can ask or imagine...I have witnessed this in my own life, but the doubt still comes. We ask you to pray for daily strength and endurance. The verse from Hebrews 12 has been on my mind, I've been meaning to look it up - well it just happened to be the verse of the day on bible gateway. "Let us run with perserverence the race marked out for us." It is already marked out for us, how we choose to run is up to us, but thankfully God says we are not alone.

There is much to be thankful for and I continue to hold tight to the promises of restoration in Jeremiah 33..."Call to me and I will show you great and unsearchable things that you do not know."

I will update when we get test results and a date set for the casting. We are so grateful for your prayers.

Believing before

I debated whether or not to update quite yet because we have not spoken to MG's neurosurgeon or genetics doctor since the MRI, but wanted to share what we know so far. I did speak to the genetics nurse and she was able to read the radiology report from the MRI and actually email the findings to us. It appears that there were no significant findings about her spinal cord. The main thing they were looking for was a tethered cord or some other issue of the spinal that could be causing the scoliosis. To be honest, I am both relieved and a little discouraged. I know this may sound warped....but if one of these things had been found, it would have been more definitive....a solution to the problem. However, we are trusting that this IS good and God knows what is best for Mary Graham. And we are so thankful that God protected her during that procedure. We may receive some more information about the MRI after speaking with the doctors.

So, now what? We continue to wait. They were able to collect a urine sample during the MRI to start a 2-3 week test that involves trying to narrow down what kind of genetic condition MG may have. Also, we are still considering options for her scoliosis treatment, which is the most important focus right now because it is progressing. We should have much more information about these options this week.

There are many ups and downs right now. But God is ever so present. I read my devotion this morning about the children of Israel after they crossed the Red Sea, it says in Psalms that "then they believed his promises and sang his praise." So they didn't believe in God's promises until after they saw His work. Hmm, sounds familiar....me. But he wants me to believe before....no matter what the circumstances. In Psalm 27 it says, "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." God has already been so gracious to let us see his goodness and His work. But in the land of the unknown (which is really where we all are, right?), I want to trust and believe before and not doubt Him and his love in circumstances of life.

We ask you to pray for upcoming treatments and tests results that are unknown at this time and that God would go before us to prepare the way. I will update this week as we learn more. There is much to be thankful and praise Him for and we know His perfect plan prevails.

Ah, then the next verse I read after all this...."You do not realize now what I am doing, but later you will understand." John 13:7

Thankful that we have a God who goes before...

MRI is done

We are home from Mary Graham's MRI and it went very smoothly...praise God. Going back to try for the second time made us very anxious, but the Lord's hand in it was so evident......When we arrived at 6:00 am our genetics nurse met us there (she went out of her way to do this) to make sure some special labs got done while MG had the procedure. We were also then greeted by a good friend's sister, who we were not expecting, and she checked us in. Then after being taken to our room, the same anesthesiologist and nurse anesthetist that Lucy had for her eye surgery in May just "happened" to be assigned to us. They were wonderful and were well aware of what happened last time and said they were prepared. The nurse gave me a huge hug and said she had prayed for Mary Graham last night and this morning and just knew God was going to protect her. After they got her under anesthesia, the doctor came and found us in the cafeteria to tell us it went beautifully and then the MRI went off without a hitch. And, while we waited, a good friend from church came to visit us. She is doing great now and doesn't seem to be feeling any effects of her procedure. All of these things were blessings from God and took away so many of our fears. How gracious is He to be in the small details.

I kept reading the verse, "I will help you, I will uphold you with my righteous right hand." He did just this.

Thank you so much for praying....we will wait now to hear back from the doctors about the results. Please continue to pray for our anxious hearts, for a hopeful diagnosis and healing for Mary Graham.

MRI and other things...

Was going to wait until Thursday to update, but we have had a little more develop with Mary Graham and have a few prayer requests. We spoke with our orthopedist this week after he had reached out to several other orthopedists in and out of town.  We have been given some options about her treatment and we ask for prayers in this process. God is walking beside us and He has already shown us steps to take in this process. "If the Lord delights in a man's way, he makes his steps firm...the Lord upholds his hand." Psalm 37:23-24. Please pray that we would have clarity and firm steps as we make decisions about her treatment and for wisdom for the doctors. We also know things can change as we still haven't finished all the testing about an underlying condition she could have. Pray for us to stay clear minded as we process things as they seem to be constantly changing.

Although the things around us are changing, I am comforted in the fact that God is unchanging. He is showing up in some amazing ways to me as I have prayed to truly "see" Him in all of this. I could go on and on. The worry and fear that comes with caring for children can be unbearable at times. God has constantly been calling me back to Him, driving me to increase my faith in Him, not in this world.  A devotion book I read this week said, "As you thus affirm your faith, shackles of worry fall off instantly. Enjoy my Presence continually by trusting me at all times." Shackles....a word that keeps coming back to me and lead me to listen to a song I haven't heard in a long time, "Shackles." The words say, "Take the shackles off my feet so I can dance...just to praise you, praise you through this circumstance." Then again today, my devotion book was asking, "what are you being shackled by?" I think God wanted me to SEE this word. It's almost like I can physically picture this, when I walk around with a heaviness at times. He wants to remove these shackles, to lift this load and I can praise Him. This is a daily choice to let him remove them.....but why would I want to carry them around? I want the control, I don't want to let go. But I don't want to be bound anymore. And there will be new shackles, but I will choose to let him take them today. There is much to be thankful for and I am seeking to praise Him.

Thank you for your prayers and wrapping us up in your love and support. God's love for us has been so evident in this last week through others, it is overwelming. Your phone calls, emails, cards, or even just saying you are praying is so humbling and we are forever grateful that you have chosen to walk with us. I know others of you are suffering in great ways and going through trials of your own. After running into a dear friend who is walking through some very difficult trials, she encourged me with the verse in 2 Corninthians "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all Comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." How amazing that God created us to bear each others burdens and I have witnessed this so beautifully in you.

I will update tomorrow after the MRI.....we covet your prayers for Mary Graham.

Burdens and Blessings

Today we went for a follow up appointment with the orthopedist. This appointment was originally supposed to follow her MRI, which did not happen in June, but we went today to gain more insight from the orthopedist. It seems as though these appointments are not following in order as they should, but I'm trying to trust that God is truly ordering our steps in this process, because it is getting more and more complex.

To sum up the appointment (I will do the best I can to explain this clearly, although some of it is confusing for me, so bear with me) they did further xrays and found that her scoliosis has progressed in the last two months. The doctor is concerned because she is so young and it's progessing rather quickly, as this can begin to affect other organs, and surgery may be the next option for her. He is going to begin speaking with his partners in the practice and making several calls this week to Boston and St. Louis to other very experienced orthopedists for guidance in her condition and we would most likely go elsewhere for the surgery. He mentioned the option of placing a growing rod in her back as one of the surgeries that could help stop the progression as she grows. We should expect to hear from him in a few days. Also, her hip dysplasia is significant, meaning both hips are dislocated and her joints are rigid so they do not easily bend or move as an average infant's hips would. At this time, he's not sure whether these hip issues can be treated.  But, he said most infants can adapt and learn to crawl and walk with some delay in this skill even with this condition. Again, these are things we won't know for a while.

The orthopedist said this plan could all change once we have the MRI and learn about those results. The spinal MRI will look more closely at the soft tissue and muscles surrounding the spine. If there is a spinal condition that requires surgery, we will go down that path with the neurosurgeon. If there is no spinal condition, we need to narrow down the disease/condition that Mary Graham has so the doctors have a clearer plan of how best to treat her.

So, we left today with a lot more "what ifs" and seeing all the different turns that this could take us, but still no definitive answers. Honestly, trusting God becomes all the more difficult on days like this, to not hold on or analyze every word the doctor said, try and make sense of it and process it in my mind. What does her future hold? I looked down tonight at a piece of paper sitting on my counter with the verse in Genesis my kids are learning at summer day camp..."God looked at everything He had made, and it was good." Again, I try and return to His word, His goodness and promises. Ugh......but my emotions go in the opposite direction. 

Earlier this week I read about burdens being a blessing. I always have just thought of the pleasant things as blessings, not something in my life that was hard. This was the quote from Frederick Faber "No matter how overwelming, any burden God has loving placed with His own hands on our shoulders is a blessing." So, this burden, our burden, God has given to us out of love. And because it is given by Him, it really is a blessing, because He is good.

As I type these words, I feel His peace, even though I don't understand and even if I am squinting to see His goodness today. I pray that we would see the blessings, the good and the bad, in all of this, especially on days like today, because more uncertainty will come.

Please continue to pray for a hopeful diagnosis and healing for Mary Graham and her upcoming MRI on July 21st.

Her precious smile brings me great joy throughout the day and thought I should share it with you. She is a blessing....thank you so much for praying.