Wednesday, August 27, 2008

and we're off....

I am SOOOOOo excited to be heading out of town.....on vacation. Can you believe it, the Smith family is leaving town and not heading to a hospital! We will be heading to Door County tomorrow to stay with my dear aunt lori and uncle marc and their kiddos in their beautiful log cabin!!! We are so ready to relax... no tv, no cell phones, no internet and no agenda!

We all need a little r&r.

I will blog pics when we return on Sunday!

Have a great holiday weekend!

Sunday, August 24, 2008

is she really six........

"Learning to trust God with a life as fragile as Madison's was one of the hardest trials I have ever faced. Seems silly when I think about it. The God who cut a dry path through a raging sea; the God who took a lowly Shepard boy, five stones and a slingshot and made him a warrior; The God who delivered Peter out of a guarded cell, is the same God who cupped His massive hands gently around a fragile body and breathed life. The same God who laid his hands upon the lepers, the outcast, the lame, placed His hands upon my heart and said "fear not, only believe". Every time I look at you Madison I remember the past, yet I can not help but think of the future. You were the best teacher I ever had. You taught me to have faith, that the Lord cares, and that we are not here by mistake or chance, but by the grace and love of God. Most importantly you taught me humility, for apart from God I can do nothing, but with Him nothing is impossible. We are not in control, but when we loosen the grip from those things we cling so tightly to, His tender voice will cut through the icy sting of disappointment & give us courage, strength and faith to face the trials of life head on."
Scrapbook entry from when Madison was in the NICU 6 years ago. Boy is it still true today!
Is it possible that six years ago today she was born?? I feel like I have been a mom forever
but yet I also feel like she was just born yesterday. Six years ago this sweet, precious, tender girl was struggling to breathe. I am so reminiscent tonight as the clock ticks by... I keep thinking about what was happening in the hospital 6 years ago to the hour. In the morning I will be thinking about the helicopter that came to take my sweet first child, just hours old, to Rockford to the NICU. Boy has she kept us on our toes!
Despite all of the medical issues that poor Madison has had she is such an amazingly happy little girl. These pictures make my heart smile as I can see that she is "just fine" even with all that she has been through. She loves life, loves people and best of all loves the Lord.
Sweet Madison Grace you will never know the love I have for you until you have a child of your own!!!
Happy birthday baby!

Friday, August 22, 2008

banged up beauty.....

Oh my goodness can the girl really not get a break??? Another injury to Madison's every growing list!!! Last night on Jed's duty (side note: chipped tooth and stitches have also happened on his duty!!!) the latest injury occurred, not that it has anything to do with neglect or not paying attention. I think that it is comical that when a mother leaves home wild accidents happen!

The kids were in bed early because today was Madison's first day of kindergarten. Jed heard some chatting upstairs, not unusual since the new adventure of sharing a room. A few minutes later the laughter turned to blood curdling scream...... here is the injury!


Madison was annoyed that Olivia "kept waking me up" so she invited her to come sleep in bed with her in hopes that she would settle down. Somehow on the way into bed Olivia's head collided with Madison's..... I came home and Madison was sound asleep with the icepack still in place. This morning it was a beautiful shiner. She cried because she did not want to go to school like that... we tried to tell her that the boys would think it was cool.

Always lots of reasons for pictures in this household!!!

Tonight we went to the fair to celebrate Madison birthday coming on Sunday. We took her good friend Gabby along! They had a great time and we are all pooped out!! And speaking of poop...we have had no accidents in 48 hours and 2 days of successfully pooing in the big girl potty!!! I feel an underwear shopping trip coming on!!!

Here are pics of the wild day.......

First Day of School

Still friends....even after the injury!!

At the fair....this is before Olivia freaked out because she was NOT a fan of the ride!

Gabby & Madison

Pouting after the "freaky" ride!!!Now we are better!!!

Taking it all in....Having a blast with NoahMadison is always up for a challengeAll tattooed up!!!Olivia was also not a fan of the noise in the barn!!

Madison was in love with this sheep!!! This is a GREAT fair picture...

dirty girl with missing teeth, black eye, petting sheep in pink leopard "outfit" all while carrying the bible she received at one of the booths!!!

another day with good news....

real quick update to be followed with more info later!
1- Madison pooped again!!!!!
2- Danielle has been discharged!! Scans looked good so she will follow up with her OB on Monday for pain management issues with the severe headaches... probably being causes by the other tumors that she has in her neck and shoulders.

Stay tuned for pics of Madison's latest injury!!! The girl should be living in a rubber room!!!!

We are off to the fair to celebrate all the good news and Madison's birthday(8-24) !


Thursday, August 21, 2008

pray for my little sister.....

Lauren, Danielle and me at the baby shower last Sunday.

my sister Danielle is 33 weeks pregnant. She has struggled her whole life with hemagiomas, tumors that form in your blood vessels. Danielle has been under special care since her pregnancy began. Last night she started having allot of pain and was having some involuntary eye twitching. After seeing her doctor today they have decided to admit her to the hospital. She will be having scans done in the morning to see how everything looks and then decisions on how to move forward will be made. Please pray for Danielle and Ted these next 24 hours as I am sure they are anxious about what the scans will show.

Danielle's doctor told her that a baby born at 33 weeks would do fine..... not something I would wish on anyone though. It brings me right back to the days with Maddie as a preemie.

We love you Danielle and Ted and are praying for you!

great news.....

hello all!! Just wanted to give you an exciting update! Madison has been on the new dosage of meds for 2 days now with no results. We were instructed that if after 48 hours we had not had any poop that we were supposed to give an enema. That would have been this evening and we have had no results.....until.... after lunch I made Madison sit on the potty. For the first time that I can ever remember in her life she had a normal solid stool that she said she could feel!!!! Can you believe it! I wanted to take a picture of it! I was so excited but since I know that more than family is checking the blog I will show restraint! Madison asked me why I was crying... I told her that I was so happy that she was able to go potty. She immediately decided to take advantage of the situation and said " do i get a surprise"!!!! Of course the answer was YES!!!

I will email Dr. Levitt and let him know! I am sure that he will be thrilled as well! So we will continue on with NO EXLAX and 2TBL of Pectin for now!!!!

Wednesday, August 20, 2008

technical difficulties.....


do you ever just want to curse modern technology??? Every morning, just like clock work I walk down stairs ...right to the kitchen where my husband has already brewed coffee (bless him!). The next two things are just habit - first, the ipod Bose docking system is started up. A day without music is torture to me. Some days its kids praise music, others it's a little rock and roll... you just never know until the day begins what music is in order. After the coffee is poured and the music is pumping.... its time to check email, look at blogs and check Arbonne business stats. Now the day can begin. The kids have slowly woken up with a cartoon and it is safe to start interacting! Trust me the girls and I need our space in the morning. Jed, the "morning guy" will never totally understand this concept... he wakes up dancing and smiling, somewhat of an annoying trait to the "night girl"! However, I will never understand why someone would not want to start a project at 10 Pm in the peak of "high performance"! I get my best work done from 10-12pm and Jed works the 6-8 am shift..... we have just learned to appreciate our different time clocks!

Imagine the distress in our home last week when I came down stairs and the coffee was not ready because Jed was out of town, the Bose docking station completely stopped working and my computer would not turn on!!!! It was a rough morning to say the least!!! Of course all the warranties had just conveniently expired! So it has been a rough week without our modern day conveniences...or as i feel necessities. It is quite in the morning and the girls always laugh and plug their ears when i try to stand in and take the place of the good music we once enjoyed! Hopefully the dear UPS man will be delivering both items any day here.....

no luck....

Madison has been on her new meds for almost a week now. We are not having any luck with getting things straightened out. Some days we are still having several accidents and then other days she is not going at all. We had the xray yesterday and it showed that she is still empty!! Dr. Levitt has decided to take her off of the ex-lax completely. We will stay on the 2 TBL of pectin. if she goes 2 days without stooling we have to give an enema. We just started this routine yesterday so it will be interesting to see how it goes. School starts on Friday so we are bummed that we are still at a place where there is no consistency or ability to predict what her patterns will be.

Jed and I remember a conversation with Dr. Levitt back in May when he informed us that there is a very small percentage of kids that you just can not find the correct dosage of meds for. 1 square is to high but a half is to low..... please pray that this is not the case for Madison. Pray that we are able to find the meds that will work for her. We are going back to a very strict eating schedule like we did in May just to see if that will help at all. So we will be doing no snacks at all and a very regular meal schedule. Dr. Levitt has not instructed us to do that but we are trying to do everything in our power to get her in undies as soon as possible....without having to introduce enemas.

Thank you for your continued prayers!

Friday, August 15, 2008

great news for our sweet girl...

Just wanted to update you all on the great news that we received yesterday at Madison's appointment.

Madison and I traveled to Sycamore on Wed night and stayed with Lauren and Derrick. Lauren, Madison and I left at 6 am yesterday and drove straight to Maddies appointment at 3. Madison is a great traveler and we made it with no problems at all.

Dr. Levitt was excited to see Madison and started with his normal joking the second we walked through the door. Madison LOVES him! The exam showed that her incision is doing great and there are no problems at all. My biggest concern, as I have shared with you in the past, is that Dr. Levitt would want to start the enema program as we are having NO LUCK with the potty training or getting out of diapers.

I could tell that after telling him how many accidents that she is having he was bummed because he is DETERMINED to have her in big girl undies for 8 days! After really looking at everything he believes that we are over medicating Madison. The decision was made to drop down to only HALF (!!!!) of an ex-lax a day and double the pectin. He said that he is hopeful that it will slow down the colon and that she could be in undies by next Friday!!!! That was GREAT news and not at all what we expected to hear. Dr. Levitt said that he was impressed that she has been able to go from 6 squares in May all the way down to a half! We will do an x-ray on Tuesday morning and then decide if that will be where we stay with the meds. The x-ray showed yesterday that she was totally empty! So far today we have had no poo... I am hoping that she is able to empty with the lower amount of ex-lax.
After the appointment last night we went to get some fun stuff for Madison bday invites (I will take pictures once they are done!) and then to get all of her school supplies. She had so much fun! This morning we got up and drove to Akron to surprise Danielle! She was so excited! We will stay through her baby shower on Sunday and then head back to Freeport on Monday!

We will keep you updated on how we progress with the change of meds. We are hopeful that it could be our answer and that after weeks of worring about her accidents we could finally have some success.

Monday, August 11, 2008

wow....we've got a lot done!

disclaimer: If you have your magnified glass out and are looking through all of the piles and stacks that are "for sale" do not be alarmed or offended if an item that you once gave or owned is in these said piles. I cleaned and cleared and asked a series of questions. If the correct answer was not given to every question the item was deemed "not able to move to greenfield". If your feeling are still hurt then go ahead and get 7000 square feet of stuff (4500 of house and at least 2500 of attic and basement!) and fit it in a 2000 square foot house! I am saving them the agony of realizing that it will not all fit!!!! If we would have kept it all there would have no room for you to come and visit. And if you still feel some kind of attachment to the items there is a good chance that you could visit Twice as Nice, Goodwill or the Crisis pregnancy Center and get it all back!!! (but then your kids will do the same thing to all of your stuff before you know is a vicious cycle!)

who wouldn't want to stop and see??

room #1

Room #2...everything you see is for sale. If it is on the walls, the tables or the floor it is for sale!!

Rooms #3 & #4 not pictured!!!

Keeping the kids entertained...every dumpster needs a good cleaning!

the volunteer army... Lori, Bridget and Claire
The bathroom after scrapping and before plaster!
Grandpa & Olivia paintingJed & uncle Marc refinishing floors!The help is going crazy!!!To much work...not enough fun!!!

Ok... I am back.. not quite back to the land of the living as I am soooo tired, but back! It has been a CRAZY week! Where do I start?
We have been busy at mom and dads house with cleaning, painting, refinishing floors and holding the worlds largest moving sale ever! We did AWESOME and were very successful at moving out allot of “treasures”! Today we have been sorting and delivering: some to consignment, some to goodwill and some to the crisis pregnancy center! I feel so great to have gotten rid of so much! I feel so free!
Mid week we had a terrible storm pass through Freeport. The lighting was incredible and the thunder down right scary! Jed was out of town for 4 days and of course that is when the lighting and thunder come crashing in. We lost power for about 40 hours.... never a dull moment. Luckily, it was just my area here in town (you are surprised right. I am not usually in the bottom percentages!) Mom and dad had power so we just camped out!
We are slowly starting to get back into the normal routines here. School is starting in just a few short weeks. Is that possible? Madison is still really struggling with bowel recognition. Some days we will catch something when I have her sit on the potty but other then that we are always having accidents. She is no where near ready for underwear. It is very frustrating as we will be 5 weeks post-op on Thursday. Madison has her follow up appointment on Thursday in Cincinnati so the two of us will be heading out on Wednesday night. It will be along few days in the car but it will be fun to have time with her. She is a great traveler! We have made hotel reservations near a huge scrapbook store so we are planning on getting all of the stuff to make her birthday invites! She is having a very special birthday party and we need very specific items for the invites! We will also be going to get all of her school supplies! As you can imagine she is very excited about all of that as well!
Unfortunately, we think that the C-diff may be returning. The last few days I have seen some signs that alarmed me and then today some definite warning flags went up. She has been off the anti-biotics for 8 days now. Dr. Levitt has ordered a stool sample and has started her back on antibiotics as a precaution until the sample comes back. If it is negative we will just stop the meds. I had a feeling that he would treat aggressively as it is so dangerous. We will have to wait about 3 days once the sample is collected to get any answers. I am hoping that we can have those by the time we meet with him on Thursday.
I talked in length with Madison's teacher this morning. As the days tick by and we get closer to school starting my discouragement rises. I was so hopeful that things would have worked themselves out by now and that Madison would be able to be in undies and doing great. For some reason that is not where we are at. I am struggling to except that but am trying to stay positive and keep believing that none of this is a surprise to the Lord. Why Madison has to struggle so much will be a question I will have to deal with. Mrs. Hollis was great and is so understanding of all that Madison is going through. The school is willing to work with me as much as possible to make this as easy for Madison as possible. If the C-diff has returned I do not believe that enemas will even be an option right now. I talked with Miriam a little tonight and she implied that enemas would not be effective with the infection and antibiotics. Dr. Levitt has said that if by school we are no controlling her bowels that we would began the enema program for 3 months. My heart aches to think of that possibility. I will continue to trust his judgment as I feel like he has always done what was in her best interest. It is hard to weigh all of the options. The advantages of not doing enemas are that there would be no daily agony. It is so miserable to administer the enemas and so devastating for Mads. The downside of not doing them is that there is always the possibility that there could be teasing and joking that Madison is the only one that wears diapers. She has become immune to her own odor and it makes it difficult as she is not aware of an accident until I smell it. My heart breaks to think of what kids could say that would hurt or embarrass her.
So allot will be determined in the week ahead. Is there a new infection? Will she start school or will she be back in isolation? Will we start enemas? Is there still strong belief that bowel recognition is possible?
So much to take in and process. I broke down today for the first time in awhile... (Sorry Connie that you had to be there for that!) It is so hard. I try to be strong and some days I do really good, or at least do really good acting the part! Today has been hard. So we will start over tomorrow and pray for the strength to get through that day. I need to stop looking ahead as that gets to overwhelming. So here we are again, smack dab in the middle of a situation where we have to chose to have faith and believe that the Lord has an amazing plan for Madison's life, no matter how difficult.
Thanks so much for your continued prayers!! we all need them!
I will keep you posted!

Friday, August 8, 2008

o my gosh I am tierd!!!

it is good to look at these to remind me of why we are working so hard!!
isn't beautiful!!! I am so happy for my parents!!

the walkout basement....

the secert garden

ok...since I last blogged my parents looked at a house, bought it and have had the biggest moving sale you have ever seen!! I think that I have logged about 60 hours since Sunday (seriously!!) and we have made unbelievable strides in the right direction.

We may be a little crazy! We are fixing their house, packing and holding the sale all at the same time. I have some great pictures of what all is going on! i will add those tomorrow when I get a hold of my moms camera! the new house is absolutely georgeous!

I wanted to update you all so that you did not think that we had all been abducted! I will do a longer entery eyes are about to close and I have to be back on "money duty" at the sale at 8am!

Saturday, August 2, 2008

a sad day....

taking down the crib

Mommy pouting that I have no more babies!

The nursery is now the playroom!!

daddy takes a breather after disassembling the crib

Olivia approves of the playroom

Piles of stuff to pitch or take to the attic!

more piles!

The garage...starting to overflow!

I am so sad.... there are officially no more babies in the house. We packed up the crib after 6 years of it being a part of the family. I am in no way saying that it will not come back out at some point but it was hard to see it get taken down and brought to the attic. I am way to sentimental! the nursery is now the playroom and Maddie and Olivia are sharing a "big girl room". I will add pictures of their room when I get it all done!!

We continue on the journey of getting rid of stuff. The garage is OVERFLOWING with stuff to sell. Part of me just wants to take it all right to goodwill.... My sisters have convinced me that they need to go through it, so I will continue on!! It feels so good to get it all out! I do not remember the last time that we had empty shelves and drawers! WoooHoooo!

I will keep you informed on the purge!!