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!
Nikki
Wednesday, August 20, 2008
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 school....in 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 it...it 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 painting
Jed & uncle Marc refinishing floors!
The help is going crazy!!!
To much work...not enough fun!!!
Jed & 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!
Nikki
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!
Nikki
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
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 later....my 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!!
Nikki
Thursday, July 31, 2008
getting rid of stuff.....
oh to have the imagination of a child! We have been busy (in a isolated way) since being home. I came home with a new sense of urgency to GET RID of STUFF. I think that being away for 3 weeks and living just fine on what was in our little suitcases, well maybe medium sized (!), made me realize that all the extra is not necessary! So we came home and I began tackling! What else is a girl to do when her child is in isolation and she can not leave her house?? I have started stacking the garage full of things that I have been holding onto for years! I am purging every closet, cabinet and drawer. I am having way to much fun getting rid of lots! I am so compelled to live simply.
You know a big part of it comes from that ah-ha moment when you really, I mean really, get what is most important in life. I am embarrassed to say that it took me 30 years to finally get there. As the days ticked by in the hospital I thought less and less about what was left behind. You just get in a zone where nothing matters but trying to keep those you love the most together and happy. Everything else just becomes noise if you will. You could have told me in the midst of that stay that if I did not return immediately my house would be gone along with everything in it and I would not have thought about leaving. I would not have packed up and left Madison to "save" our belongings...because nothing here has lasting value to me. ( mom I would have called you to get the scrapbooks!!) So then when I returned and there was GOBS of stuff and it almost frustrated me. I start thinking about all that I want to be able to do to help others, specifically Cincinnati Children's and I feel guilty that I have so much. So we are minimizing and man does it feel good!
I will have to take some picture! You will all be so impressed with the emptiness in the closets! I still have a LONG way to go but everyday I am doing one thing to move me in the right direction! I may need to take stock in Tupperware, I am loving stackable bins and organization...maybe they would donate a portion of all of my purchases to CCH!!!!
As for Sweet Maddie Grace... since that is probably why you stopped by! She is doing good. Her bottom is getting a little better everyday! I have been emailing with Dr. Levitt and am encouraged as he tells us not to be discouraged by all of the accidents. He said because of the "extreme bowel prep" that they did before surgery and what was done during surgery that her colon and has been traumatized.... I could have told you that from seeing the pictures! He says that he really believes that she will get that sensation back in the next few weeks. We are praying that is exactly what happens!!!! We have added the pectin back in which totally bummed her out as that is a nasty tasting one that we mix with yogurt. I am thinking that the reason for that is to bulk up the stool to give her a better chance to feel the need to go potty. We will see how that goes! She finishes her anti biotic for the c-diff tomorrow and then will be retested in a week to make sure that she is free and clear!
Thank you so much to all of you who continue to show us so much support! We so appreciate it!
Nikki
Tuesday, July 29, 2008
magic butt cream....
Here it is... This is the "medical name" for the new prescription that we picked up today! The girls think that it is so funny!! They just keep giggling and laughing! I am not sure if it is Dr. Levitt's secret formula or what... the pharmacy called and said they had to order some dry ingredients to mix us a special cream that was called in!?
We will see how it works!!! Fingers are crossed!
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