The end of Today

Taken in the post op recovery unit where we ended up being for three hours! She woke up and opened her eyes and pulled her blanket (lovee) and new kitty up to her and went back to sleep and snored for three hours.

So backing up a bit, today has been long but ok. I hope you are all ok, all of us in the midwest are in the middle of a blizzard and I sit here perched up on the top of this gorgeous new $300 Mill hospital looking down on the winter wonderland below and this is the first moment since 6 pm that Sophie has been resting comfortably and I have had a moment to write to you. Her surgery and preop went off with out a hitch. Dr Mann said he was thinking about her all week trying to decide the best way to go for her expanders and was on the phone with the company that supplies the expanders and he presented us with what he recommended as the option of 4 expanders (1 large one across her back, 2 small on her stomach and 1 on her thigh) what we will likely do is inject two a day and alternate, so this means shots every day. I think when I processed this info later in private, I had a "moment" in the bathroom and broke down and sobbed. I can't tell you how I used to live for those days when we didn't have to do shots! But I reminded myself all week Craig and I had been praying for Dr. Mann's wisdom and the fact that he had been trying to decide what to do all week and came up with this idea and I have faith in God's leading of this awesome Dr he has blessed us with. The cutest preop moment Sophie looked up and said "Hi Dokker Mann" when we were meeting with him before surgery. So adorable!

Like I said when she got out of surgery she slept the whole time we were in recovery and they had trouble finding us a room, the first one they had they then found out the whole floor had a respiratory flu so thankfully they decided not to send us to that floor! Around 5 pm I started to get a bad headache. My sister who had come to the hospital and sat with us for several hours this afternoon had brought us cookies and I ate a cookie and took some excedrin. Well little did I know at that point it would be 8:15 before I got dinner but by the grace of God my headache went away and I was completely sustained by that cookie (thanks God and Ange!).

When we got up to our room she started to wake up in a lot of pain and disoriented and was crying out for things. See I thought it would be so convienent now that she can talk and tell us whats wrong or what she wants. The problem comes when she has unreasonable requests. So she started saying "toy, toy, play toy!" over and over, crying, sobbing for a toy. I knew instantly, when they gave her the medicine to make her go to sleep before surgery that she was asking for the toy she had been playing with at that time. We tried other toys, not good enough so Craig ended up going down to surgery and getting the same toy and just seeing it calmed her down. But clearly she didn't have good pain control for a long time. At one point it was just she and I in the room and she looked at me and said "Go home?" and I said "Honey we can't go home, we have to stay here where they can take good care of your boo-boos" "Why Momma?" she cried. And then I cried. I didn't realize hearing her tell me what she wanted would make me so sad. So they had been having trouble with pain control, and they wanted her to eat something before giving her more meds and she was turning down everything we offered and suddenly after I asked her 50 questions and the answer was "No" to all 50 when I said "would you like to sit up" I finally got a "Yes", and when we brought out the cinnamon teddy grahams she looked twice at them and started putting them in her mouth and ate over a dozen! Praise the Lord! Then she got more meds and is sleeping peacefully now finally. The Dr thinks her leg may be the most painful because it is a new area and it indeed seems pretty unhappy when we move it while trying to reposition it.

So I have given you lots of details, lots of options for prayers. Basically pain control, good nights sleep, and a perkier Sophie in the morning! Thanks you all for your prayers, you can't imagine how I felt them all day, even when things are bad, I feel them, I feel God, and I feel all of you, my family and friends here with me! Amanda

Tomorrow is the day!

Grace has a tendancy to keep a vice grip on her sister's neck while posing for pictures. I have been so proud of her, we have been using m&m's to bribe Sophie to hold still and use her inhalers (working like a charm, gives me hope for shots!) and Grace has never once asked for candy herself as she watched her sister get them with her medicine 4x a day! She just cheered her on and encouraged her every step of the way!

Taken tonight with our prayer warriors, the Kerkstras, they come pray with us before every surgery! We love them dearly and cherish their faith and care!

Thank you for your prayers this past week, her lungs have improved and we are proceeding with surgery. The house is a bustle getting ready for another big surgery tomorrow. I think I got all my yucky emotions out last night and I was crying in my bed and then Craig and I held hands and recited the 23 Psalm in the dark together. Shall we say it again together now...

The Lord is my Shepherd, I shall not be in want
He makes me lie down in green pastures
He leads me beside quiet waters
He restores my soul
He guides me in paths of righteousness
For His name's sake
Even though I walk
Through the Valley of the Shadow of Death
I will fear no evil
For you are with me
Your rod and your staff
They comfort me

You prepare a table before me
In the presence of my enemies
You annoint my head with oil
My cup overflows
Surely goodness and love will follow me
All the days of my life
And I will dwell in the house of the Lord forever.


See don't we all feel better from what ails us. So today I kept pretty upbeat and it seemed like a pretty typical Monday. And I got to talk to my Momma who is out of town so that helped! Of course now I am just in getting stuff done mode so it's easier to not think about the "hard part". I was just saying to someone that of course we have been through this a half a dozen times and so that makes some things easier. But when it gets right down to it, I want to throw myself down on the table and say "cut me instead" to save her from pain. It's hard for my head to explain to my heart, that it will be ok. As a mom, you just HATE to see your baby suffer. But about four times today she came to me with the bottle of lotion and begged me to put it on her mole so I know she would like relief from the itching that comes with it so I am eager to get as much of it off of her as possible.


So getting down to the details. Surgery is at 11:55, we will go there at 9:55, she has to fast on foods at midnight (so she may be getting up and having a snack soon!) and then gets a breakfast of juice, popsicles, and/or jello jigglers before 8 (her big sister is kind of jealous of the breakfast selection). Hopefully she does as well with the fast as she did last time. Surgery may be longer than usual if they do three expanders and they never tend to be on time anyways but I will update as able when we are out. Thank you as always for your faithful prayers, my little Sophie is a tough cookie and I know she is brave and will come out strong on the other side of this, and I have a feeling her Momma will too!
Amanda

Sickness and surgery

First things first we always start with pictures, they make all the bad stuff seem better! This is Grace and Sophie on Gracie's 5th birthday, she is a terrific big sister to Sophie!

New years day, good thing it was practically balmy we got to try out our new present!

Looking at Christmas lights with Mommy

Eating Christmas breakfast!

I frequently feel guilty about constantly asking for so many prayers for myself and my daughter. I know there are worse burdens facing many people out there. But the things most moms stress about; potty training, choosing preschools, their childs frequent ear infections, etc. All the normal stuff! I however have all those same issues and a whole LOT more. Well today, once again, I need your prayers badly. Sophie has been wheezing heavily all weekend and has been taking albuterol. We went to her pediatricians this morning and she likely has bronchitis however he didn't rule out the fact that she may be coming down with asthma (wouldn't be too big of a surprise, both Craig and I have it) which may worsen when she gets sick. So she is going on amoxicillin and continuing to use the albuterol every 4 hrs. Now first prayer request: When we give her the inhaler we have to restrain her which is not fun (getting good at restraining my daughter is not something I wanted to be doing!) Next the medicines need to work: The Dr said if she doesn't get better they won't be able to do her surgery. Then we were off to Dr. Mann's for our pre-op appt. Please pray for wisdom as he decides how many balloons to do and where to put them (he/we are considering one in the leg which would be new territory for us, also if he does three that means three pokes with a needle everyday, so there is all that to consider). We still haven't been given a time for surgery next Tue but please pray for her healing so we will be able to go ahead and please pray for wisdom in the planning and preparation. I'll let you know when we have a time! Thanks as always, Amanda

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!