God's been good to me

Right when we got home from the hospital she asked to "det down" and walked over

to the coffee table and put on Grace's shades!

Sitting up eating the morning after surgery, she asked for "ow-wives" (olives) from my salad

Waiting for the transporter to wheel us out for the ride home,
a little dose of tylenol with codeine does some good!

Snoring peacefully in Mommy's arms

I always get torn between waiting until I have a full picture to give you and possibly having a long wordy update (I never intentionally set out to be wordy but it tends to end up that way) or give lots of little ones. I guess I was waiting for the full picture assuming that most people were also on facebook too and had heard how she was doing that way but for those few fb holdouts I will give you the best recap of our amazing week. In defense of my long drawn out blog entries the specific prayer requests that I provide you with collected from the various unfortunate experiences we have had in the past only give us a mighty advantage in our prayers. I am not saying that when we simply pray for Sophie's surgery as a whole God cannot and would not intervene but the miraculous events of this week lead me to speculate that having such specific requests to offer up has helped. All of the things I had asked you to pray for specifically came to pass. That Sophie would tolerate fasting ok. Well see for yourself...

That little girl had the best attitude of any kid in there and was constantly getting very concerned about any of the other crying "Babies" (all kids are babies even those bigger then her) and was offering to "rock" them. I love that little girl. The prayer request about no purple areas we had to wait until Mon to see for ourselves. She was all bandaged up good this time. We were very proactive about changing her position every two hours at the hospital so no blood would pool and when we finally saw what was under the bandages on Mon, hallelujah no dark areas. Now I will admit I have a little disappointment in "how much mole" we got. I think I will always feel that way. As long as there is still so much that means more surgeries, but these are worries for another day...For now I am so grateful that she got through this one and is doing so well. One of other concerns was the Dr being gone, the drains and bandages, etc. Well I pushed hard for us to get a home care nurse and it has been WONDERFUL! I only wish I had done this before. What an amazing relief for me on Monday when the bandage had to be changed, when Sophie was crying and in pain and I didn't have to be the one causing it and trying to get through something I wasn't really experienced at for the love of my daughter. Instead, I could hold her and comfort her while someone else took the bandage off. This was such a relief to my heart, you have no idea how hard it has been to do all those bandage changes and know that you were the one making your baby cry. We have to change it again tomorrow but it shouldn't be so bad. What was so bad was all the tape they use in surgery and the nurse used a minimal amount this time. Anyway Dr Mann comes home tomorrow so we also made it through this hurdle. We see him on Mon, I expect him to take out the drains and take off the bandages at the time and give us the go ahead for bathing as well. Last time because we had the blackened area we had to do dressing changes every day for over 2 months. Wow, is God good or what. She is moving well, you can tell some movements are a little painful. She did a lot Sat afternoon and Sun and then was kind of miserable Mon but has been better Tue and today so I think she is learning to pace herself. Here is another video from Sunday morning...

This really has been the smoothest surgery yet, and in terms of waiting until Sept, we have two vacations in August now to enjoy, one with Craigs family and one with mine. Also the date of surgery was supposed to be his first week back at school which although he would have had that day off he wouldn't have had these half days to be home more and it would have been difficult to take more time off so moving the surgery up in and of itself was a miracle. I have been so blessed by the support of family and friends as always. Too many to mention. A big shout out to my wonderful Mother in law for staying with us for 5 days this time! I love you. Thank you all so much for your prayers, as you can see they are powerful. I fall to my knees and thank our sovereign God for how he has guided us along this long path and even though I know that we have a long ways to go this week gives me so much hope that even when it is so hard, that he is RIGHT THERE. I was standing in the hall at the hospital and another mother had been pacing outside our door, her daughter was in the room next door and I struck up a conversation with her. Her face was furrowed with lines of little sleep and worry. Her 16 year old daughter had had a kidney operation, she was fine now and wouldn't need any other treatment. The mother said she didn't realize it would be so difficult to see her daughter like this, it had been an awful night and she felt so anxious and upset. She inquired about my daughter, "You have just a little baby who is sick?" I told her all about Sophie, I thought she would fall over when I said that it was little Sophie's sixth surgery. "How are you handling this so well?" She asked. I did reassure that I probably looked a lot more like her at her first surgery but that really the Lord's blessing and the power of prayer is what has seen us through a lot of difficult times. I joked that as a mom I have learned the meaning of the phrase "what doesn't kill you makes you stronger" and I do feel stronger because of all of you and I am blessed to be given the opportunities to share my faith even in the midst of this struggle. Ok I did it again, its a really long post. But only because some of you asked for an update. You asked for it you got it... Amanda

Surgery Details

Details of surgery forthcoming. My camera recently died and so I am going to try to take some before shots of her balloons at the hospital with my moms camera and then I will have something to compare to the after shots and then I can show you before and after pictures later. First a few cute pics from our cell phone!

I am getting in to dressing the girls alike lately! Its fun and girly!

Riding with her sister
(Disclaimer for those of you who are shocked and dismayed, Mom was at work, Dad was in charge, Dad assures Mom that while no they don't have helmets on when the tricycle was in motion Dad was right behind said tricycle, Mom insists that while the picture is pretty darn cute Sophie still could have fallen and cracked her head open on the pavement. Then Mom wonders what else happens when she is at work...)

Well here we are at another surgery again. Fridays the big day, Sophie is scheduled at 11 am and we have to be at the hospital at 9. I of course hope the fasting goes ok for Sophie, I just finished making her jello jigglers for the morning of surgery but it seems that the last surgery she did better in this area than I expected so I pray that trend continues.


For any of you who get lost in all "this" and need a slight review of what surgery she is actually having, she will be having her two tissue expanders, (one in front, one in back), removed and the Dr pulls down the clear stretched out skin and cuts out as much mole as he can remove. She also has a few other little areas that need tweaking, she has a large hypertrophic scar that itches her side and limits the tissue movement and he is cutting that out, she has two very large sattelite moles one on each shin (one already partly removed) that he plans to take out.


One area that could use a lot of prayer which we didn't know about until right up until we got in there last time was the issue of blood perfusion and tissue death. Please pray that the reconnection of blood vessels would allow for healthy blood flow to the reconnected skin so it doesn't run the risk of dying and having a complicated wound that needs healing. Craig and I have been here many times, this is little Sophies 6th surgery and 7th time going under anesthetic. So we have some peace in knowing we have been through this before. However on the flip side, Sophie has made some changes, she can walk now, she can talk now, so these changes may make it easier for her to tolerate what is happening or in the very least communicate to us how she feels.


There is one last major issue that needs prayer. The main reason the Dr was apprehensive about squeezing in a surgery with his busy schedule was that he added this day of surgery on for Sophie but he has to leave Sat to go up to Mackinac Island until Thurs so he is hoping and praying that Sophie will be ok to go home the next morning and won't have any problems (at least any that we couldn't handle by phone) until he gets back. This is part of the stress of having a specialist who is the ONLY one who does what he does but luckily like I said we have been through this before and we have lots of support. Praying for God's blessings on little Sophia for a quick and speedy recovery and that she wouldn't suffer in too much pain. Thanks for all your prayers and support. We love you all, you carry us!

Happy Fourth and a quick update

Happy Fourth of July everyone!

Thank you so much for all your prayers. I was so touched in the last two weeks with all the people who have stopped me to ask about Sophie especially today at church and I realized in the hustle and bustle I hadn't updated you on what the Dr. said. We are out of the woods as far as emergency surgery it seems, her fevers stopped and over the last two weeks even the redness has slowly subsided. Praise the Lord. The Dr had us stop injecting indefinitely and thinks this is a sign that we need to get them out probably soon so we are hoping he can fit us into his busy schedule in the next few weeks to move up her date from Sept. Its hard to know whether this is good or not. I always want it to be over as soon as possible but I also know that the more we stretch it, the more we get each time the fewer surgeries she has to have. Bottomline though this surgeon has been remarkable in his care and concern for her. In fact he said he bumped into our pediatrician at the hospital and asked him, "How's Soph?" I love that these two excellent physicians God has placed in our life to care for my baby care about her so much and that she is a concern of theirs. So we are waiting to hear about possible surgery, Dr gets back from vacation on July 8 so we should know something then and I will let you know. In the meantime, thank you for your continued prayers, you all mean so much to me, you get me through...

Amanda