No matter what...

Fall Family Photos

I have an almost two year old, I can't believe it although today she would not let me forget it. All day long my sweet little Sophie was into all sorts of mischief and mayhem. If I tell her not to climb on the coffee table, she finished doing it, stood on it and raised her arms into a pose and yelled "Ta da", if I asked her to clean up the crayons she dumped out, she said "No!" and began throwing them, if I told her not to open a certain cupboard she put her hand on the handle, opened the door a crack, turned toward me with a wicked grin and said "Hello Momma". You get the picture, naughty has moved in to my house and its all wrapped up in an adorable package. I told my mom I feel like I should use reverse psychology and ask her to climb on the table, throw the crayons etc and maybe I would have gotten my desired results but I suppose that wouldn't have taught her a whole lot about obedience. So I am getting ready at my house for that infamous period known as the terrible twos and yet I know I am so blessed to have little Sophie in my life and I am sure all the ups and downs this year bring will just add to the flavor and excitement of our household.

We have had several months off from all things medical and have been loving the peace and normalcy around our house. What you don't know, I was waiting for the right moment to tell you, whatever that means, is that we are not on a permanent vacation. A few months back I went to see Dr. Mann and although he had previously told me that we would take a nice long break for awhile somehow in the back of my mind I knew that was too good to be true. I even joked to someone the day before the appointment, due to the laid-back attitude and tendancy to not tell us a whole lot of info sometimes I could totally see the Dr saying we were having more surgery, so when I stood in his office Monday morning, and he looked at me and said "Are you ready to go again?" I almost laughed out loud. But then of course on the way home is when the tears came, talk about floodgates.

I don't know why I was initially so upset, and really still feel upset. I do have the right to say no but I know its best for Sophie to keep going, saying no would just be selfish. Plus I would just be prolonging the inevitable, its not like I didn't know that she needs years and years more of surgery, I just really feel kind of burnt out and exhausted like the life I once had, or thought I could have, all the dreams and goals and aspirations I have are forever ended or at least altered because of a mole and sometimes that makes me down right mad or maybe just heart broken or both I can't decide. That day, after we saw the Dr my sister gave me great advice,"Just live your life! Sophie and her surgeries will adapt to you and you will be amazed by how strong she will become." I have been working very painstakingly at letting God transform me from someone who is stuck in a place of fear. Fear of the future, fear of not knowing, fear of letting go of some of my dreams and letting God create better ones for me. I hate not being able to have control and see how it all works out in the end. And I am finding freedom in watching God cut away those fears and doubts and leave them behind, they didn't seem to be doing me a whole lot of good anyways. So we are still waiting for our surgery date, probably sometime in Jan/Feb of 2011 which will be kind of exciting to be in the new hospital which looks amazing (hey, after 7 surgeries, I will take the perks where I can find them!) So I will let you know details about that when I find out. I will leave you with one of my favorite songs that I first noticed when Grace was bopping along to it in the car and knew all the words, that's a first for her to know the words to a song before me. I posted the video above but here are the lyrics, I ought to sing this everyday:

No Matter What by Kerrie Roberts

I am running back to your promises one more time

Lord that's all I can hold on to

I gotta say this has taken me by surprise, but nothing surprises you

Before a heartache can ever touch my life

It has to go through your hands

And even though I keep asking why, I keep asking why

No matter what, I'm gonna love you

No matter what, I'm gonna need you

I know you can find a way to keep me from the pain

But if not, if not, I'll trust you, no matter what

When I'm stuck in the nothingness by myself

I'm just sitting in silence

There's no way I can make it without your help, I won't even try it

I know you have your reasons for everything so I'll keep believing

Whatever I might be feeling, God you are my hope

And you'll be my strength

Anything I don't have, you can give it to me, but it's ok if you don't

I'm not here for those things

The touch of your love is enough on its own

No matter what I still love you and I'm gonna need you

No matter what, I'm gonna love you

No matter what, I'm gonna need you

I know that you can find a way to keep me from the pain

But if not, if not, I'll trust you

I know that you can find a way to keep me from the pain

But if not, if not, I'll trust you, no matter what.

No matter what.....Amanda

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

Need Prayers

Hey Everyone

This is a brief update to ask for prayers. Sophie has had fevers on and off for the last week. She has been monitored by her pediatrician and he checked her for everything even her kidneys for an infection. Her tissue expanders still looked fine at that point until last night she had the first inkling of a red rashlike spots all over back. She saw the surgeon today and he wants us to monitor it closely over the weekend and he thinks it may be getting infected and she would need emergency surgery to remove it and of course they are not scheduled to come out until fall so this is more than a little upsetting. I also have to work all weekend at the hospital and I won't be around much so I will be full of anxiety worrying about her. I lay awake last night until 2 am not sleeping. The verse in Matthew about not worrying about tomorrow for tomorrow will worry about itself seems to just fall on deaf ears. I had been meaning to give you a nice calm update instead of this frantic one but at this time I need you to pray. I tend to have to work very late on Tue/Thur due to the nature of my schedule/paperwork and I was on my way home very hungry/tired/and eager to see my family at 8 pm tonight and I was very emotional about the surgery prospect and the song Healing Hand of God by Jeremy Camp came on and I was reminded that even when our mountains seem so huge, our God is a mighty God who can heal and I pray for healing for Sophie this weekend and wisdom for all her care providers. Thank you.

Happy Mother's Day

Well I thought it was time for a little mini blog makeover! I wanted to drop a quick line to offer out a request of prayer. As those of you how live around in the West Michigan area know Grand Rapids Public Schools is in an ever precarious state and this year we are under the impression that there is a strong chance that Craig may be getting a pink slip again this year. Its happened before, we have weathered this storm before and God has provided and we have faith that he will again however timing is at a critical point. Sophie's surgery is supposed to be in Sept and if Craig does not get hired back than his benefits expire Aug 31. We want to get as much as we can out of the balloons and we don't want to take them out early but we can't leave them in indefinitely if there is no insurance. We need prayer for job security. The other main issue is little Sophie's balance has been getting progressively worse and we need to pray that she doesn't sustain any serious injuries between now and then as the balloons seem to throw her off kilter, a week doesn't go by when she doesn't sustain a fat lip or two and she is constantly falling down, it's a little sad. But she is happy and growing and learning lots of words. Hope everyone had a happy and joyful Easter and Mother's Day as we did. Sophie is going to her first Tiger's game this weekend (if its not too cold!) So that should be fun! Take care and love to all, Amanda

Today's Appt

Admiring her big sister!

Climbed/Fell in the toybox while getting ready to leave in the morning! She is becoming quite the monkey!

Well I saw the Dr again this morning. He thought her balloons looked really good. Her large hypertrophic scar on her side will be removed at the next surgery, she may have more that get big though, he said later in life we will do surgeries just to improve the scars as needed. Interesting concept, scars to fix scars. So knowing summers busyness and vacations I pressed him for an ETA on surgery, he said June they will be "full" but then we over fill and expand as able, wanting to avoid August all together due to vacation(s) we are aiming for Sept (gulp) 6 more months. This led me to ask for tips on the shots because they are getting SO hard, it is impossible to stabilize/restrain her belly and she knows how to roll it around to avoid the needle so its like playing darts with a moving target but much more important that you don't miss. He gave me a sympathetic smile and said he had no advice, this is a problem with her age and an indication that after this round we may take a break for awhile until she is in a more bribeable age (like Grace) which is all the more reason to get AS MUCH as we can this time so we are setting our sites on September, unless something goes wrong and they need to come out earlier. Finally, not to beat a dead horse, I took the plunge and challenged him one more time to explain the MRI results, and he clarified that it was indeed clear. However I said "good I can rest easy that that is clear" and he did suggest there were no guarantees that it was forever clear, I am taking it as good news unless told otherwise! So all in all a good appt, although I am exhausted thinking of six more months and seeing my husbands shoulders and face fall when I told him this as well I agree that we need to continue to get as much as possible. We will soldier on, we do shots Wed, Fri, Sat and Sun nights between 6:30 and 7 and would appreciate prayers for this process, as those of you who have witnessed it know its a tough job! An added praise was how well behaved big sister Grace was at the appt this morning, that always helps me get through these difficult appts. Have a great week everyone. Amanda

They say honesty is the best policy (deep breath) so here goes....

So I haven't posted in SOOOOO long. Sophie has been a busy little one year old to chase after. I am attaching video of her walking and in her new "squeakers" my sister got her for her birthday that she finally fits in. I think the funniest thing is that she is oblivious to the sound coming from her feet. You can also get a glimpse of her quasimotoesque bulges growing in both her front and back.


Shots have been going pretty well this time around, as good as they can I guess. I would say the more we do them the more she fights back but all in all its only like a bad five minutes of my day. Some other blessings is that we have had to use less pieces to the injections and the medical suppliers deliver to our house which is so wonderful. She has also had a string of ear infections and with signs of spring all around us Craig and I feel like a couple of bears emerging from hibernation and we are so anxious for warmer weather, less time couped up indoors, less illness and more fun family time.

Craig has been under a bit of stress with taking a class and his less then ideal teaching job and the changes in his job he will likely face this summer. All that to say that when we open the window and feel those first gusts of chilly spring air our entire household seems to take a collective breath of relief. Change is coming, its part of life that we can't control and it keeps on coming and no matter what you do to "prepare" there will be new circumstances that throw you for a loop. Our situation with Sophie is teaching me that. I have been holding so much inside, wanting someone or something to blame, even if it is myself; wanting to believe that I could get the whole thing taken care and magically erased before she was old enough to know what was going on, wanting to believe that things I want and feel are just out of reach in my life are a physical example of my lacking, not deserving or just plain suffering at the injustice of it all. Yesterday our pastor delivered a sermon almost directly to me in that regard. I was humbled and in some ways freed from these expectations that we have to hide all the bad in our life and slap a fake smile on our face and keep working on "pleasing" God. The truth, that we are all flawed and hurting and need grace and forgiveness and sometimes a swift kick in the pants is so much more vulnerable and honest and even shameful. I have been struggling for many years with health issues and sometimes I feel as though I have been buried under a heap of rubble and will never claw my way out. With Sophie I feel this intense pressure to change who I am to be a better example for her. How can I teach her to be proud of herself and stand tall and strong despite her innumerable polka dots and growing scars if her own mother hides in shame and wears a mask? I am stating now before God and these witnesses that I am crawling out from my pile of debris and making my changes, one painful change at a time. I have changed the way I am feeding my family jumping on the clean eating train with my parents and other friends. I am cutting out time wasters and playing with my kids more. I am engaging in productive activities so at the end of the day I can stand tall and say look what I have accomplished today and be more proud than ashamed. Its been a tough month but I am trying to make changes that will last for my family, after all I am a Mother, its what we do. Nicole Nordeman wrote a song called Brave when her first child was born talking about the strong tug on your heart when you are a parent to be better. "So long status quo, I think I just let go. You make me want to be brave. The way it always was is no longer good enough, you make me want to be brave." I feel strongly that even if the walls of this little house are the closest I see to a mission field I need to serve God to the best of my ability in my home. There are so many wonderful things that I so richly was blessed with growing up in a home saturated with love from Godly parents. I want my girls to grow up with those same memories.
Finally I was sent an email with this video that I have linked at the top of the blog. It humbled me beyond measure. I pray God will give me a servants heart for Sophie like the Dad in this video and that he will bless her with the same enduring spirit and steadfast love that this young man exhibits. Please take a moment to watch it and be blessed.
Carrying on in bravery and trust....Amanda

Thank you all for the notes to Craig and I that you sent over the last month, I know Craig has been touched by the uplifting words. We had a bustling busy but very Merry Christmas and Happy New Year and I hope all of you did as well.

Here is a picture of little Sophie sitting and clapping as she watched the train go round the tree, it was the first time watching this year and she was delighted. Then she took it a step further and would become like Godzilla (and for those of you who have spent any time with her she certainly makes the right sound effects) and every time Craig would run it she would knock the train off the tracks or just pick up a section of track, it was as if you could hear the tiny passengers screaming...

The girls with Santa - I was just relieved to get a shot before her lip started quivering as she is very attached to her parents these days and a little anxious with strangers - even jolly bearded present delivering ones!

Here she is on Christmas morning - she never really got the hang of opening presents, I think she was really just too overwhelmed, her big sister was more than happy to help her.

Sophie is doing quite well, we were able to arrange Sophie's first injection day to be next Monday on Martin Luther King Jr Day which GRPS takes off so Craig is able to go with me which is crucial as I know it will definitely be a team effort to do the injections this time around with our wiggly one year old. Here she is getting wild climbing into the pots and pans cupboard!

One of her ports has become pink this weekend and we are keeping a cautious eye on it. I feel as though it is a little late for it to be any sort of infection and it is not what Dr. Mann has taught us to identify as "angry red" so we are waiting to see.

I wanted to send a link to a hospital magazine from Chicago where Dr. Bauer works (he is the Nevus guru and our surgeons former mentor during his fellowship there) and the article features a girl named Allie whose parents are a part of my online support group. As Allie is a little older I believe she had had surgery early on as a baby and had a face full of scars as a result and it wasn't till much later where her parents heard of Dr. Bauer and tissue expansion which they used in I think 5 rounds of expansion to remove both nevus and scars from previous surgeries. Anyways I thought it was a nice article and I would share if you were interested. Again it makes me very glad that Sophie is able to go through all of this fairly early on. If we can get the majority of it done before she reaches school age I will be a very happy Momma.

I am feeling full of hope as we start the new year. Last year literally all my dreams/goal/aspirations seemed to freeze in time as I started out on this journey and in the last few months I have caught myself thinking so many times Wow I can't believe we have been at this over a year already. I now need to find a balance. Yes my girls are my priority even above myself but I am not giving up on the ways I know God wants me to grow individually as a person just because I have this new challenging circumstance to face. He carries me through all the rough patches and I am so thankful to have such a loving Lord and Savior. I hope you all feel his love at the start of this new year even in the midst of your battles, with hard times all around us in the economy, losing loved ones and jobs, and countless other trials that rock our world, my prayer for myself and hope for you as well is that we prioritize our lives to love and serve God first, our families second and our world in anyway we can. God Bless, Amanda

http://www.northshore.org/uploadedfiles/publications/Connections.pdf