Update! and event

The Update is.....I have no update.  We were supposed to see Dr. Mann this Monday and all three girls in my household are ill! I have not been able to talk since Sun night, laryngitis is very inconvenient let me tell you!  You don't realize what you got til it's gone, right? We just came from watching my adorable niece and nephew run in a West Michigan run (the junior river bank) They each ran a mile and it was great to see so many kids out embracing health but it was hard to cheer when you can't even talk!  My sister actually told me about something happening next month, it's a good thing she is aware of what is going on with Spectrum Health even though I WORK FOR THEM!!! Nice, I am oblivious anyways.  Seeing as we have benefited from the wonderful services at...

...so many times and with this gorgeous new facility...

...I feel very blessed that if my daughter has to spend a lot of time in a hospital that this is the town we live in and she receives such high quality care.  Not to mention this guy....

...Gotta love Dr. Mann, he's the man!  Seriously if you ever see him walking around GR do me a favor and give him a hug and tell him thank you!

 That being said I always jump at every chance I can get to support this hospital!  So next month they are having a charity walk for HDVCH and it's in my sisters adorable little town. 

So I was looking at the website, they have a 5k run/walk or a family walk (1.5mi) I thought it would be super awesome if we could form a Team Sophie and support the hospital and come out and as a unified group to support my sweet baby girl and raise awareness about her condition.  If I can get your support to walk with us, I am going to see if I can find a place to get us team tshirts (I know nothing about this but I will do my best!) and we can have a fun event on what I will be praying will be a beautiful day and I know we could raise lots of money to help our little people in the community, because don't they deserve the best??? Let me know if you would like to do it with us and I will contact you about registration.

  Our rescheduled appointment is not till the week of the race, I hope then I will get an estimate on how much longer we have but for now things are going great, the Emla works wonders (we call it magic lotion) and allows her to get her shots with very little effect.  The only challenge is getting the timing right, having enough time to put the emla on and let it sit before shots.  Also getting clothes over her lumpy body but she doesn't mind she rests her arm on her tissue expander and strokes it and says "My bah-loon!".  If tonight is any indication of the race, Grace is more likely to ride in the stroller and my little Determinator Sophie would like to run free.  She was itching to get on that track tonight, hopefully next month she will get her chance and you can join us! 

Children of God

I struggle deeply with recent pains I face, as a parent, I know it's mostly because of how deeply we love our children. When they hurt, we hurt. When they first dip their toes in the waters of sin, we struggle with the great burden of urging them toward repentence. When they accomplish much, triumph in victory or celebrate any milestone we expect the whole of the world to stop and applaud at their acheivements with us. Our love is big and that makes it painful at times. I have experienced many heartaches lately especially when it comes to the ugly truth that no matter how much you love you cannot protect them from hurt and evil, this is after all the real world, not heaven. Today I was driving along and I heard the above linked song by Third Day, Children of God which of course I had heard many times before but today it struck a distinct chord. My God in Heaven loves my kids even more than I do, they are His children too. All those deep feelings and burdens I feel for them he feels even more! He has a plan for them and He is much bigger than these "momentary troubles" and it is "achieving for us an eternal glory that far outweighs them all" (2 Cor 4:16) How Wonderful!

And then I had a perfect moment of clarification, I am His child too. So when I am brokenhearted, feeling defeated and alone God feels pain because as His child He desires to keep me from pain and He loves me so much. There are SO many times that I can't begin to fathom how I ended up on the path that I am on, I always say that I don't know why God thought that I was a strong enough person to be Sophie's mom, she needs someone who is more disciplined, with better self-esteem and self-awareness, a much stronger woman of God, a better prayer warrior, I could go on and on about where I lack. But then when I look at what I have been through not just with Sophie but even way before she was born and I realize I am a survivor and He is teaching me more and more every day. I feel like some people do get a much easier road to travel but if I can share with Sophie that I understand a little about scars (metaphorically speaking) that makes my difficult journey a beautiful story indeed. My prayer is that I can always always always point my children to Him and that I can be open to the uneven terrain of this path I am on and that I will "have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us." (2 Cor 4:7) Thank you God, that you count me as one of your children!

Now enough about my "issues" here is why I am supposed to be blogging, to tell you how Sophie is doing. I would like to do a quick summary/recap of where we are at for new readers or just because people constantly ask me questions that indicate no matter how many times I seem to explain it some are really still unclear about the situation. Sophie was born with a GIANT mole covering almost 40% of her body at birth. It is extremely rare. The treatment is removal due to many reasons: 1. Most importantly - high cancer risk, the more we remove hopefully the more we remove the risk, and if it did become cancer you can't quick remove 40% of your skin so you sort of need to get a head start 2. Discomfort it causes her to itch incredibly (dry skin and thick hair on mole) and overheat (she got multiple fevers last summer because of the size of the mole and it doesn't sweat) 3. Appearance - obviously we want her to look as good as possible for her own self esteem but this is NOT why we are doing it and in the end we are replacing moles with scars so she will have many appearance hang-ups to overcome I am sure as well as the fact that we won't likely be able to get the whole thing, she has hundreds of mini-moles or her polka dots of many sizes all over her body which continue to appear forever. The removal process is that you put tissue expanders under good skin, stretch it out (by injecting it for many months, about 8 usually), then you remove the expanders, pull down the newly stretched good skin and cut out as much of the mole as possible. Sophie has had seven surgeries already. She now has 4 tissue expanders (balloons as we call them) in, one on her leg, two on her tummy and one on her back.

We are supposed to inject them, originally we were going to do 2 every day, I thought I would rather get all four in one day to give us a day off in between. The first 2 times we injected went pretty good, the last 2 times were awful. Tonight we tried to role play with her Dr kit and dolls first, we gave them shots and comforted them, etc. That didn't seem to help, when she sees the real shot paraphenalia she starts crying. She needs to be fully restrained, she screams, all the while drooling chocolate that Grace and I are desperately feeding her thinking it will help her. And of course Craig gets tense when she is screaming and screaming and many times the needle wasn't in the port correctly and we have to pull it out and put it in again in order to get the fluid to go in so she ends up getting even more then 4 shots. She says things like "no more owwies, Momma" which of course is heart-breaking. And I don't want to give her or Grace some sort of traumatic stress disorder (Grace got sort of traumatized watching it one night). It's definitely a heavy scene. Tomorrow we are going to go get some numbing cream from the pharmacy and it has the potential to make it so she doesn't feel it so please pray that it works for us. That is about it for now, we are just trying to work out the kinks. Sophie will be getting shots about 7pm every other night so that's a great time to offer us up in prayer if you think about it and I will let you know how the cream is working. Thanks for listening, my heart is strengthened because I know you are out there! Amanda

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