Lots of baseball, choir programs, school parties, Easter egg hunts and trying to get a good family picture.....that's what's been going on in our life the last couple weeks as we are trying to adjust back to normal life. Mary Graham seems to be slowly improving - overall I know she is feeling better......although the last several days have been rough. She is still battling pain and we became concerned about pain in her hips... just touching them in a certain spots makes her scream. Physical therapy has been rough - yesterday she cried throughout the whole thing. So, the orthopedist wanted her to be seen (thankfully we are able to go see our doctor in Birmingham and not Philly) and we went today for xrays. Her hips are still in the sockets and her veptrs appear to be in the same position they were right after placement, thank goodness. The doctor explained the pain could be one of two things, either post op pain due to swelling around her hips because the veptrs are hooked to her pelvis, or because of the great amount of pressure the veptr rods are putting on her pelvis and hips. He said the latter could be worrisome, in that it could be shifting her pelvis so much and affecting those muscles in her hips. So, they want me to continue pain meds around the clock and see how the next two weeks go, also trying her on her tummy (most likely when she's asleep, so she's the most limp) to see how painful it is on her hips when/if they can be straightened. Which may be hard for me to decipher because she has never been able to tolerate her tummy because of weakness and her scoliosis and hips, so we shall see. If the pain continues, it could mean adjusting the position of the veptrs or another surgery. So please pray that this is still part of her healing and that we see improvments over the next few weeks. If you don't quite understand all that I just explained, just know that I don't really either....I have to always get the nurse to explain it over and over again to me.
Despite all of this, she is still giving us some smiles and is content, moving her seems to be what causes the most pain, and that's completely understandable! Also, another concern of mine has been how her little spirit is so afraid now. I mentioned earlier how in the hospital she truly would lose it when anyone even walked into the room. She has become so very aware of what's going on around her. She is great to smile and wave to others from afar, especially if she's in my arms, but when someone comes too close or tries to hold her, it's just too overwelming and she loses it. So, of course the orthopedist visit today was miserable and she has yet to warm back up to our sweet therapists. As a one year old, I know separation is normal, but I also believe all she has been through has affected her so much and I just pray for her fears to be calmed. It's hard for me to imagine all the times we will go back for surgeries and doctor appointments and for her little spirit to be shaken so much each time.
Some days have been hard and I worry about her development and the longevity of all this, what her future holds...what mama wouldn't? A friend reminded me of the joy and sorrow that is intertwined together in this life, as it was on the cross. It gets hard to lay these things at the foot of the cross, to keep looking up, especially when I have a baby clinging to me :) I'm sure some of you can relate...
I read an update from a friend whose little boy has been sick in the hospital for three months now....what she wrote moved me, "On Easter, as I think about an empty tomb, I am reminded that things are not always what they appear and that God has plans bigger than us."
Lord, thank you for the empty tomb.
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