A Very Special Case.

Case has been on the new Pediasure Peptide 1.5 for about 13 days now. The plan is to take a 2 week trial on it before switching him completely. Here is a short list of the Pediasure Peptide 1.5 pros and cons compared to the Pediasure 1.5 he used to be on. Pros:  *Vomits and retches seem to be less then before (I think). Now he has around 3 to 5 (sometimes more) vomit and or retches in 24 hours instead of 7+. *It comes in a bottle instead of a can. Not a big deal. It is more convenient though. *He is not constipated any more and we stopped the med for constipation. Cons: *Diarrhea. That's a big one. If it continues, he will be switched again. It seems like every day it gets a TINY bit better but sill diarrhea like. So, That's that in the poop and Pediasure department, on to the "prayers". Something really cool happened today that I thought I'd share. Case started to cough and retch so Lainey (his 3 year old sister) ran to grab a towel. As yo...

A few weeks back I was told I'm a glass half full kind of girl. I really appreciated that. It was, of course, said by one of the women that help Case along his journey. In the weeks since she said that, I was really examining myself and trying to figure out what makes me the "glass half full" type as to not let it slip away. I thought of Case, and how I know no other ways for my fourth child. Sure, I have three other children all without disabilities or special needs, but each child is distinct. I try to not compare and have only ever known this way of life for our fourth. Case has become a my new kind of normal- so much so that when I'm watching my 6 month old niece SHE seems different. In the back of my mind for a split second I "watch out" for her Mic-Key (which she of course doesn't have). I don't lay her on her back after she eats so she doesn't vomit (then I realize, she doesn't have reflux). I even find myself impressed when she drinks...

Case had his appointments Thursday. First was Dr. Schneck, the senior surgeon with urology at Children's. He's the surgeon who did his surgery on March 2nd and will do the next 3 surgeries on his boy parts. He said everything looks good and is lowering his "family jewels" ;) on July 9th. We were told to pack a bag and leave it in the car. So, it may or may not be out patient. Next was Dr. Ruldolph with GI. I love him and he loves Case. He asked how things in the feeding area are going, not great was my answer. Case has been vomiting and retching up to 12 times a day and sometimes through the night. He seems uncomfortable after most feeds.  He's showing a little interest in taking things by mouth but has a very hard time swallowing. He lost weight. Not a huge concern but still not ideal. Dr. Ruldolph is checking him for soy and lactose allergies. He also ordered an upper GI for April 30th, a swallow study for June 21st and switched him from Pediasure 1.5 to Pediasu...

There's just something about another NICU mom. A bond that is unexplainable. I met Lisa in January, 2011 the day she was discharged from the hospital (just a few days after the birth of her second son). I first met her aunt on the Pent House floor of the Ronald McDonald House. The Pent House is a beautiful place designed for families to connect with each other and other families. I met a lot of families up their but Lisa's was different. While speaking to her aunt I opened up. She was a stranger but I didn't care. I told her all about Case's medical history and otherwise. She was so sweet and understanding. She told me of her niece and her great nephew who was now in the NICU fighting for his life. It was then I fell in love with Ramsey, his mother, grandmothers and whole family. Lisa and I have been good friends ever since. We talk of things that none of my other friends understand, not because they don't love me but because they were never NICU moms. They were nev...

I wrote this a few days ago and am just now getting around to posting it.:) Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days ...

I Still would have chosen you - By Terri Banish. If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... ... ... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you If He had told me, "This soul may make your heart bleed", I still would have chosen you If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you If He had told me, "All that you know to be normal would drastically change", I still would have chosen you Of course, even though I would have chosen you, I know it was God who chose me for you. Case is a beautiful so...

Dan is very special. Our marriage is also very special. Dan was 20 and I was 19 (I was not  6 months out of high school) when we married. I'm not going to lie. Marriage wasn't always easy. Anyone who says marriage is easy is either a saint or a liar. It's hard. It requires work, dedication, commitment and most of all selflessness. I once heard an interview of a hundred year old woman who was celebrating her 80th wedding anniversary. The interviewer asked her how they stayed married for so long and she responded, "We never fell out of love at the same time.". I really liked that. In my marriage there were times when Dan or I weren't giving 100% to the marriage but the other (usually) did.I found that as a wife I can't make Dan the best husband. I can't make him be what I thought "a perfect" husband was but if I love him at his lowest moments and try to give 100% all the time I've found that he loves me back even more. He becomes exactly wh...

Where do I even start? This kid is like a giant ball of crazy cuteness! She has a fire belly and joy in her heart. She is three so there are challenges daily. But at the end of the day, it doesn't matter how many  pieces of "abc" gum she chewed or how many times she sang, "I'm sexy and I know it" she will always be our baby girl. She is very helpful and with direction and teaching a very good sister. She keeps me hopping and laughing. Her name means, "bright, shining light". It fits her well. She is beautiful, strong and original.