War

Charlie can now climb in to the toy box, Rachel's favorite place. She has declared war.

Sick of Poop. Poop and Sick.

Rachel "came down" with croup on Thursday. Thursday night she coughed through the night and I thought it was just a cold. Kept her home from school on Friday and she still seemed ok. Friday night, well, different story. Put her down to sleep and at about 10 PM we heard her coughing and making that awesome barking noise. Stephen went in to calm her and noticed she couldn't catch her breath. He brought her into our room and I could see her chest suck in each time she inhaled. Yep, it was time to visit the ER. They dosed her up with a steroid and sent her home. She got an oral steroid on Saturday that she was supposed to take until Wednesday. Rachel had croup before when she was smaller but I don't remember it being this bad or her being this crazy on the steroid. Her mood swings would make any weight lifter shake their head! And is she hungry and thirsty! I had her go back to school today because she was acting great this morning but then I got a call saying she broke down crying and needed to come home. Luckily the Doctor said we could stop giving her the steroid tonight. I hope things go better tomorrow!

The other downside of the steroid is that Rachel's follow up with her GI got canceled. It needs to be rescheduled for a later date because steroids help improve intestinal inflammation and we can't do any tests if things are altered. I'm really, really upset about this. Her poop issues have been going on for what seems like forever now and waiting even longer to figure out what's wrong with her just makes my blood boil. I have seriously "googled" everything and anything that could be the reason for all of her stomach issues and I've looked at my pictures of poo than I ever thought possible. I am tired of it! Tired of poop, I tell you!

Rachel Flashback - 3 years ago this week - only as big as her Dada's hand.

30 Blankets in 30 Days

Beautiful homemade quilt covering Rachel's isolette.

After Rachel was born, I launched Rachel and Friends as a way to give back to the hospital and NICU team that saved my daughter's life and in thanks to those who gave cheer to us in the form of blankets, stuffed animals and clothing. It was a wonderful success. I took a break from it last year, but this year I hope to deliver the same cheer we received to families in the NICU as they sit by their baby's side over Christmas. I have decided to just focus on blankets this year. Blankets in the NICU are wonderful things. They cuddle sweet preemies in parents arms. They decorate the outside of an isolette keeping light and noise out so the baby inside can rest and grow. They swaddle preemies and make them feel safe and secure. I am challenging my readers, my friends and my family to each donate a blanket - new or handmade, large or small - over the month of November. I hope to reach the goal of 30 blankets by the end of the month - 30 blankets in 30 days. These blankets will then be donated to the NICU in Women's Hospital in Greensboro, NC where Rachel was born, saved and cared for. If you cannot donate, please spread the word and help us reach our goal to bring happiness to families in the NICU during what can be a very difficult time. Thank you so much for your support. I am truly excited to deliver these gifts this year!

You can send your donated blanket to:

Maggie Fluck
111 Lea Circle
Madison, AL 35758

Rachel on and swaddled in a homemade blanket - waiting for her surgery.

Update on Rachel

It's taken some time but we've gotten back all the results from Rachel's tests. Everything came back normal except her x-ray, which showed she had a lot of stool backed up, and one of her stool tests indicated some inflammation in her intestines. It was borderline high so they are going to retest her when she has her follow up on the 22nd. She's been on a high dose of Miralax (sigh) to clean her out and I think she had that clean out at school today. Those poor women. I was told that Rachel pooped and it went straight up to her shoulder blades. I can only hope this was the last time they will have to deal with anything out of the ordinary in that part of their day. I have to say I am disappointed that she is back on Miralax. I thought that we had her constipation under control by just monitoring her food but I guess I was mistaken.

In other news, from what I can tell, Rachel loves school. Loves it. I know it's just what she needs since she's such a busy-body. When I get her shoes on in the morning she goes to the door and waits by it for us to leave to get in the car. The bad news is that she won't nap at school so when she comes home she's done and we get crabby Rachel who throws tantrums on the floor as soon as it hits 5pm. Not fun.

Pretty sure this is the face I'll get when she's a teenager.

Little boy is STILL a terrible eater. Just flat out refuses to eat anything but crunchy cheerios, puffs or veggie straws or smooth purees or pieces of banana that I put into his mouth. It's getting really frustrating and I honestly don't know how to deal with this. We have reduced the amount of formula he's been getting in hopes that he'll eat more but that doesn't seem to be working. I think I would fall off my chair if the kid actually ate a whole 4 ounce jar of food in one sitting without any cajoling.

 But he will eat benches.

 And magnets.

 And leaves.

Turd.

Here are a couple pictures from our Buddy Walk. The Chik-fil-A cow was there and Rachel had to hug him whenever she saw him.

Things

Rachel and I spent the day down in Birmingham, AL last Thursday. I had originally made the appointment six months ago so we could go to the Down syndrome clinic at the University of Alabama at Birmingham. Then, starting over a month ago, Rachel started to have some really disturbing stool issues. At first, we thought she had caught something viral. Then, it continued for over two weeks and I took her to the pediatrician. He took a swab and sent it off and found nothing. I called the doctor and said "This is not normal. We need to do something else" and he had a bag full of vials for us to pick up, fill up and take to the lab. Those results came back without any answers besides it's not viral and it's not bacterial.

At that point, it was time to see a GI doctor. I chose to take her to the GI doctor down in Birmingham that my son had been to when he was diagnosed with MSPI. I made the appointment the same day as the clinic appointment. I was really hoping while we were waiting those two weeks that the issue would magically clear up. But it hadn't. After taking a very detailed history of Rachel, the GI doctor decided to take some more stool samples to test for some different things, to take some blood work and an x-ray of her belly. Right now we are waiting for those results. Depending on what those results say (or don't say), we'll know more on how we are to proceed.

This has been very difficult thing for me to handle. Something is wrong but right now I can't do anything about it. Stephen has suggested cutting out foods in her diet to see if that is the issue but we can't. If we do that, any of the tests that may need to be done and the outcomes that we may receive would be compromised. I want her to be diagnosed correctly. I don't want to guess and be wrong and have to start all over again. So we wait. We should have results at the end of the week. Until then, I'll keep stocking up on stain remover and Destin and praying this is something simple to overcome.