Wednesday, August 27, 2008
Sunday, August 24, 2008
Scrapbook entry from when Madison was in the NICU 6 years ago. Boy is it still true today!
Friday, August 22, 2008
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!!!
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
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
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.....
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
Monday, August 11, 2008
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!
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
isn't beautiful!!! I am so happy for my parents!!
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 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
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!
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!!