Another setback and an encouragement.

Late last week we got a phone call saying there is a problem with insurance and if it weren’t able to be worked out quickly they would have to fill her surgery day of the 19th with other cases and reschedule us. I have spent many hours each day making phone calls, sending emails, and doing anything we can possibly do to try to figure this out. Unfortunately, as of today, we have still not been able to get any answers so her surgery has officially been postponed. It is very difficult to feel like our hands are completely tied and those who would have to work this out for it to happen keep telling us we will hear from someone soon or that day or the next day and we have not heard from anyone. The absolute hardest part of this was being back to all of the unknowns. We lived in the land of unknowns as far as her plan of care, what was necessary and best for her, and when, where, or how things would happen. Having all of this completely out of our control but still holding on to trusting God in all of this. We have said it many times before and we do believe that God has our little girl in his hands and he knows what is best for her and has a plan for her life. It is so hard to be back in this place of unknowns after having, what we thought was a firm plan.

We will continue to pursue this and in the mean time pray for patience and peace for where we are. Emotionally, it has been a hard several days for us. We decided to wait a few days to tell the children about the possible change of plans, hoping we would be able to work it out and not have to tell them at all. Yesterday, when it was official, we went ahead and told them. Each one responded a little differently but it was definitely confusing for all of them. On one hand there was some relief because they feel a bit nervous about the time apart, the unknowns of Alex’s surgery, and what the future looks like for all. At the same time they were sad for her because they know how ready she is and how it makes her sad to have to wait longer. Everyday Alex prays and asks that her leg feel better and to let her have her surgery soon. The sweet innocence of a little child. She has handled it all really well but she does ask a lot of questions and talks a lot about it. I’m thankful she is talking and asking questions and not bottling up everything she is thinking or feeling but those conversations are also hard. At this point she will have her next infusion the end of September, unless we have been able to get surgery scheduled between now and then. We want whatever is best for her, even if we don’t understand all the ins and outs of that right now.

The elephant stuffy she is holding was made for her by her cousin, Rose. She loves this gift.

August 3rd was Alex’s follow up MRI of her leg and arm. Each limb took an hour so she spent a total of two hours in the machine. She was not sedated for this one so she got to choose some movies to watch with the movie goggles during imaging. She chose the Smurf’s movie for the first part and The Greatest Showman for the second half. She did an amazing job and was so still through almost all of it. The arm was much harder for her to hold completely still than the leg was. If we have to do both again I think I would ask them to do the arm first, knowing now that it is harder for her. I am really proud of how well she did and thankful they allowed me to sit on a rocking chair in the room with her. Last MRI in May showed a place on her arm that could have indicated a new area of Gorhams. We got results on Tuesday and were so thankful to hear that the place on her arm is unchanged and appears to have normal vascular signal which makes them believe this is related to stress to the arm due to constant use of the arm crutches and not related to Gorhams. This was really good news. We also found out the top of her femur, near the hip showed some improvement, which is also a blessing, but that the area above the knee shows no change or possibly more damaged. The mixed emotions of feelimg thankful for the good but sad for the not so good is really strange and hard to know what to do with sometimes.

Alex’s favorite thing about appointment days at Vanderbilt is getting lunch or snacks before we head home. Up to this point she has always wanted Pizza from the Pizza Hut at the hospital but this trip she told me she wanted some yummier food so she chose some things from Suzies cafe. It was fun watching what she chose. A frozen chai, chicken salad croissant, cheese and grapes, and hummus and pretzels. Brent said she has been eating out with me too much!! 😄

Alex hates the way the Sirolimus makes her feel and she is looking forward to being able to stop taking it but cannot do that until about a week before surgery. She struggles with nausea and feeling tired, off and on mouth sores, and patches of eczema that come and go. She is such a positive little one who always tries to find the bright side, even when things are hard. Sometimes she shows us her sadness and frustration. Last night at dinner she told us she was hungry but didn’t want to eat and that she had felt yucky in her stomach all day. She has better days and worse days but this is the face of those worse days. She is unbelievably strong!

Wednesday was Brent’s birthday and we had a sweet family evening of dinner, a walk around the neighborhood, and cake and ice cream. LaRue helped make a pound cake from scratch and it was yummy. I couldn’t have done it without her. She is a wonderful helper, especially where baking is concerned. I am so thankful for this man. For the loving, godly, selfless husband and father he is. For the example he is for our children. There have certainly been many difficult seasons in our 17 years of marriage but this past year has challenged us and our marriage more than any other. God has used this very hard year and a half to do sweet things in our family. Our children love and care for one another better than they did before and value each other differently. Our marriage and our relationships with Jesus are so much stronger also. It is sweet to see positives shining through when we look back through the hard.

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Psalm 56:3

When I am afraid, I put my trust in you. In God, whose word I praise-

In God I trust and am not afraid.