Another Surgery Looming!

All good things must come to an end. Our good thing was having August to January as a normal ordinary family with a normal ordinary toddler. But we have our surgery date, we have our pre-op appointment and in fact with Grace's birthday happening before surgery I am suddenly feeling my presurgery blanket of gloom settling down over me like an old friend. I mean let's face it on any given day I am great at putting on a brave face but deep down I like to say "it's the end of the world as we know it." Really its a lot more like that old cartoon with the guy who has the angel and the devil on his shoulders whispering to him. The angel is telling me the obvious, "it will be fine" "it's always worked out in the past" "God will be with us like he has been before" etc etc etc...The devil however is also cunningly convincing with his "more needles and now she is older and more stubborn" "she is going to have fits everytime you try to do injections" "we are getting lower with the balloons and it's going to be a problem with her diaper and potty training etc". Oh to put a choke hold around that silver tongued devils throat... So I am trying to listen to the Lord's voice telling me, Amanda I have carried you all through this before and I will carry you again and I, as always, am taking it ONE step at a time! So for a few fun pictures and some details and updates I will leave you with this. Sophie did in fact turn two and so far its not TOO terrible because as I last expressed when she is especially naughty she is also especially adorable. What can I say, it helps.

For her birthday my sister and I took her and her cousin Tyler to see Elmo, they were super excited!

Sophie's birthday party at Pizza Hut, the girl goes crazy for Pizza!

Grace and Sophie in the surgical waiting room of the new childrens hospital. I was amazed and touched by the high caliber of the new building. We will be spending a lot of time here so it means a lot that it is so nice!

Seeing Santa, for weeks after if Sophie heard the word Santa she either said "Santa, lap" because she sat on his lap or she would say "Santa is coming to town." Very cute!

She is turning into quite the diva under her sister's teachings!

All in all, I just worry that I won't be able to relax again for another 8 months. I don't think that anyone besides my Lord totally gets the day in and day out anxiety of every night knowing you have to do a minor medical procedure on your child and constant gathering of medical supplies and constant appointments and constantly worrying that every time she cries or shows a weird symptom or new bad behavior that its related to this constant upheaval of her life and ours. Finally just plain being the one to restrain your child who is crying and kicking and screaming to get away and sticking them with a needle several times and feeling horrified not only that you are the one doing it to them but that you get to turn around and do it the next night and the next night and the next night and the next...and that when your baby calls out for someone else instead of you when they are crying you convince yourself it has nothing to do with the psychological trauma of the child associating you with these things...oh that she will at least one day read this blog and know how hard this was for her momma! Anyways, I so have liked being "normal" however I also know deep inside that we do need to keep going. The poor dear walks around the house all day long saying "Itchy!" and laying into her skin with her nails on both her sides and her left thigh where the mole is still the thickest. Apparently the high degree of unbearable itching is one reason many parents choose to have these removed for their children, it wasn't until she could talk that I knew why she was always pulling on her side. Now at least she can tell me it's itchy, that was why we had her checked for a kidney infection once because I noticed her constantly pulling on her side and crying. So if her burden to bear is the actual surgeries and the actual injections than my burden to bear as her Mom is the constant feeling of a broken heart whenever we are in a season of surgery and standing through it all with Christ's strength to get her through to the other side. In a way both those little voices on my shoulder are right. I know it won't be easy, I know the next year will have dark days and tears and moments I will feel like we just can't go on. However the voice that never fails, the voice that is so strong "even the wind and the waves obey him" and the voice that is strong enough to calm my heart will be there to see us through. That is the voice I will turn my ear to and open my heart to. Surgery date is Feb 1. Preop appt is Jan 24 and I will post time of surgery a few days before as always. And as always I appreciate your love and prayers and will leave you with the lyrics to this song:

Our God by Chris Tomlin

Water you turned into wine, opened the eyes of the blind, there is no one like you, none like you.

Into the darkness you shine, out of the ashes you rise, there is no one like you, none like you.

Our God is greater, Our God is stronger, God you are higher than any other

Our God is Healer, Awesome in power, Our God, Our God.

And if Our God is for us, than who could ever stop us

And if Our God is with us, than what could stand against
And if Our God is for us, than who could ever stop us

And if Our God is with us, than what could stand against

What could stand against

Our God is greater, Our God is stronger, God you are higher than any other

Our God is Healer, Awesome in power, Our God, Our God.

God Bless you all, Amanda

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