Phase 3 update

Sigh.  4 years, 10 surgeries and I am still getting thrown for a loop, not that I am that surprised by the "loops" any more and there is a significant difference in how we handle them now but the changing nature of this beast always seems to surprise me.  So it is not going well.  Wish I could say it was.  It is becoming more and more likely that Sophie has developed an allergy to the numbing cream that may be making it more painful.  So it would appear our "magic lotion" has lost it's magic and it's very possible that we may have to endure the next 8 months of shots without it.  With it she gets extremely red and painful on her ports every time and cries and screams every time we try to do shots.  I only hope that without it, if the allergy is indeed causing pain that she will calm down and allow the shots to take place without the cream.  I am a little sad and weepy today in the face of this new roadblock but I was pondering the whole thing and came to a few different realizations.  I have really come a long way in the last 4 years in strength and faith.  At the beginning of this journey I wouldn't have endured over a month of difficult injections before telling you all that we were struggling.  This time I have become trained at being her advocate and making decisions for her that I actually decided to spread the injections out and add more each time and treat with cortisone in between.  I have been relatively calm about this whole situation, much more than I would have been in the past, I guess a sign I am growing up.  However in that calm I wasn't as quick to ask for prayer.  Feeling a little like "we can figure this problem out on our own." I definitely don't want to get so confident that I am trusting in my own strength and not relying on God's strength bolstered by the prayers of believers.  I have been humbled continuously over the years by the prayers of others.

Recently I was sent a picture that features a woman's prayer chapel set up in her home for her daily prayers and placed in the corner of her stained glass window is a picture of my daughter whom she prays for every day.  That breaks my heart with gratitude for the love from others.  This is a woman I have met a few times in my life, most of them back when I was little like my daughter yet the fact that Sophie is daily in her prayers is so touching.  I remember the first three years of Sophie's life she was listed on the prayer request list in our church bulletin, there were many weeks when we were between surgeries or things were going just fine and I would actually feel guilty to see her name there, as if the prayers weren't needed or important.  Of course I love my child and pray for her fervently not just about her medical issues but her happiness, salvation, her heart as I pray for my first born as well.  But when others care for your child and pray for them with you it is extra special.  I guess I just need to keep being thankful and keep asking as needed because those prayers have been answered one after another over the years. In the tradition of Hebrews I would like to revisit some of those wonderful answers if you will indulge me:
1. Diagnosis soon after her birth
2. A wonderful specialist living right in our town
3. 10 successful surgeries without complications
4. A couple that prays with us and being covered with the Lord's peace through each of those surgeries
5. A happy healthy little girl who has been known to sing praises to God even when on our way to the hospital and actually asks to have surgery
6.  A medical supply consultant that has prayed for my daughter and provided us with excellent service
7.  Several in home nurses over the years that have taken the pressure of bandage changes off me
8.  Phenomenal insurance that covers nearly everything including supplies being delivered to our house
9.  A pharmacist praying with my husband in early days when he was scared and discouraged
10. A church in Arkansas sending us a handmade prayer quilt that they prayed for us while making
11. A section of skin that was turning and black and looked like it was dying come back to life
12. An balloon that was questionably infected moving up surgery a few weeks early but timing working out well.
13. A balloon that leaked only 5 days before surgery so not too much progress was lost
14.  A surgeon so helpful and accessible that he has given us his private number and talked us through various issues like flipped ports over the years
15. Discovering emla cream when Sophie was afraid of her shots.
16. Three full rounds of home injections with very little crying.
17.  Emails, cards, prayers and even pics like mentioned above always coming just when I needed encouragement like manna from heaven knowing that you the people of God are standing with us during this long battle.

The last one is more like 1000 rolled into one.  I could go on and on.  I read this morning in Jesus Calling by Sarah Young that when "adversity strikes and you thank me anyway, you trust in my Sovereignty is a showpiece in invisible realms" so I did not want to call on your prayers one more time without taking a moment to thank you and primarily God for the answers we have received so faithfully.  I wait excitedly to see how he can take this new situation of an allergy and turn it into another answer of his faithfulness to his glory.  Please pray with us again and be encouraged by all the fruit for your previous prayers!