Wednesday, March 19, 2008

Oil,oil, everywhere

I am so sick of putting my hand down on a surface and finding canola oil.

Whenever Luke eats I add a TBS of oil to his food and let me tell you, it doesn't mix easily. I tend to let it slosh around everywhere and then by the time I am done feeding Luke I have forgotten about the oil. What doesn't help either is that I feed Luke in different areas. The computer area is my favorite because I can get caught up on my shows while I feed him or give him a breathing treatment. It's quite the shocker to start typing only to realize that you wrist is now covered with oil.

The enzyme capsules are a whole other story but I will save that for another day.

Tuesday, March 18, 2008

Then and Now

Luke before enzymes

And after enzymes (he's the little one, Jonathan my nephew is holding him)

Now I will admit that he has had his ups and downs but he has been small since day 1. I remember crying in the car on the way home from a "weight check" because he hadn't gained any weight again. I remember that horrible feeling whenever I had to stop nursing because he wasn't gaining, I felt like such a bad mom.

I love Creon 5 now! Luke is gaining weight every day. In fact, this picture is almost 2 weeks old. Luke has gained almost 1 lb since then! I tell you, he eats and packs on the weight. There is nothing this child will not eat. I thinks he eats more than most children.

That's all I have to say for now. Luke is sorta starting to cough again so please pray that it is just his reflux and not anything worse. It sounds refluxy but you never know.

Thursday, March 13, 2008

Clinic visit

Luke had his very first clinic visit on Tuesday. I didn't really know what to expect because we had been to clinic before but the second they saw Luke they admitted him for a 2 week stay. This time it went allot better :)

The first thing they did was check his pulseox, temp, and weight. He sating at %100 which is awesome for him. He used to always sat around %96-97 so 100 is great. His temp was normal but yesterday he was 99.5 degrees under the arm. I think that was from teething though.

His weight deserves a whole new category. He gained 11 ounces! That is super good! He is averaging a weight gain of 28 grams a day and the dr's want him at 15 grams a day. Luke is reaching that and going! They were so happy with his weight gain that they said we could come back in 4 weeks instead of the original 2. I can't believe how well he is doing.

They did change his acid reflux meds because he has had a few nights where he has thrown up. They don't want him to lose any weight because of the reflux so they switched him to Prevacid. I was really bummed because the pharmacy said that KidCare wouldn't cover the Prevacid but when I called his nurse to tell her that it needed to be switched she got upset and said that they were supposed to cover it for CF patients. She called the state to notify them of his diagnosis and tonight I can pick it up. I really hope that it works because he gets a cough from it and it is also making him congested.

We have to go and get another Speech Swallow Study in a couple of weeks and I hope that they say we can be done with the thickener. Luke seems to be doing okay with the new thickener which isn't as thick but I hope to be completely off of it. It's just another step in the bottle making process.

Luke has been having some odd poops so I talked to his dietician today and she upped his enzymes to 2 before solids. He has been eating so many solids lately that she thinks that is why is poops are looking loose and black. He is teething though so she said that might be part of the reason for his stools looking like that.

Speaking of food. Luke is eating everything! He wants all of his solids at every meal. I think that he is starting to take in more calories than I am! He gets about 100 calories from his solids sometimes double that because he will eat 2 tubs, then he gets 120 calories from the oil I put in. After he is done eating we give him a bottle which has another 120 calories. This little man should be a chunker soon!

I will leave you today with a picture that we took the other day. This is the face he makes whenever he thinks his mommy is being silly.

Friday, March 7, 2008

I knew I was unique and other ramblings

Whenever I was born my mother chose to be a little different and spell my name with 'ie' at the end and not 'ey' like all the other Courtneys in the world. I have enjoyed having this original spelling and I have often wondered if others have their name spelled like mine. This little thing says no. I will always be different and always be correcting people on how to spell my name :) Oh well, I love being unique.
LogoThere are
people with my name
in the U.S.A.

How many have your name?

In other news I went to my sister's house yesterday and we had a fun time. I had promised my nephews that they could see Luke when he was out of the hospital so yesterday was that day. It is fun to see my nephews get bigger. I remember when they were all born and to see Luke and know that he is going to be as big as Jonathan someday is amazing. I am really learning to cherish the time that I have with my little man.

I have also decided to be in the Great Strides walk for a cure for CF. It's June 14th and I am hoping that many people will show up to walk on Luke's team. It's my first year, obviously, and I can't wait to get started. I need to think up a name for Luke's team though. I am thinking Luke's Legion but it's sorta cheesy so I am hoping that people can give me some suggestions. Anything is appreciated. I am not good at this stuff.

Luke had an pediatrician appointment on Tuesday and it went really well. He hadn't gained much weight but at least he weighs more than he has ever weighed. He ran a fever the next day and at first I was scared of infection but it was from the immunizations that he had received. The poor little man was pitiful. This Tuesday he has another CF clinic visit so I hope that goes okay.

I hope you all have a great weekend!

Monday, March 3, 2008

We're Home!

We finally made it home! We have been home since Thursday but today is the first time that I have had time to write. I had so much cleaning and organizing to do because Dan can't seem to manage it. Men!

Anyways, Luke was sent home on antibiotics that he will take for a few more weeks and he also is on all his normal meds. He gets acidophilous every day and also take a multivitamin. I tell him that he is lucky because he gets to eat food that other babies don't get to eat yet. In fact, he finds his yogurt to be absolutely delicious. He will cry after I take it away and give him his bottle. He still screams whenever he has to receive his breathing treatments so I am praying that goes away soon. It makes the time so stressful.

I went back to church for the first time in a long time yesterday and it felt great to be there. I have missed going but with Luke bing sick all the time I feel the need to keep him home. Our church has been gracious enough to understand that they can't touch Luke without using hand sanitizer and they even went so far as to put it in various places around the church. We were very afraid that people would constantly be touching him with dirty hands but now that it was announced from the pulpit that we wanted people to sanitize they all do it and don't seem to mind.

I uploaded allot of pictures so here are some from the hospital stay. You can see how he progressed as he was there.

His 3rd day there. I think he looks sad.

His crib

Playing with his bongos




The Day we left!




Sorry if that was allot! It's been awhile so I figured I was due :)