Renaming Blog and Luke update

So I think that I am going to rename my blog. I would like to incorporate something about how we are living with Cystic Fibrosis. CF is becoming a huge part of our life and I know that I want to raise awareness about it. There are so many trials and allot of research yet to be done. I welcome any and all ideas if anyone has any.

Now, for the update on Luke. He is such a happier baby now! He gets fussy but not near as much as he used to. He has been only waking up once during the night and he has been keeping a schedule. He is eating 5 oz every 3 hours and the doctors say that is great.

He has been throwing up allot though. They think that it may either be his reflux or that he is aspirating and then coughing so hard that he throws up. I personally think that it is because he is on dairy formula versus soy but they said that they are going ot send me home on soy. They really want him to stay on the Alimentum as long as he can. The proteins that are already broken down for him help him digest his food better.

Here is the BIG announcement. Luke gained half a pound since Friday! I am so proud of my little boy. I am hoping to keep getting a good gain every time. I knew that he had gained some weight because he was heavier.

Also, Luke's lungs sound very clear. They are amazed at how good they sound. No crackling or wheezing in his lungs and they don't here where he is struggling anymore. His oxygen saturation is staying super high and in fact they don't even monitor it constantly anymore. Now they just check it whenever they do vitals.

I appreciate all the prayers and I already see God's hand here. They thought that he had a bacterial infection that was CF specific. They have seen a correlation with the earlier that CFers get it and the earlier that their lungs start to deteriorate. They were pretty certain that he had it but whenever they looked at the culture after it had grown some more and they checked it again it was a less serious infection.

I hope to keep having good news for everyone. I am just so thankful for how much better he is getting. Did I mention that he is cuddling again? Well he is and I am so thrilled. Maybe there will be even more fun things that he will start doing again.

Is The Day Over Yet?

Wow! We have had an interesting last 24 hours! We went to Luke's first appointment and because he has a cough and wheeze they decided to put him in the hospital for a CF "tune up". We are going to be here for about 2 weeks so I am trying to make myself as comfortable as possible.

Luke had a rough night though. He had to get a PICC line this morning and if you don't know it is a long iv that goes from the elbow to the heart. It is better than a traditional iv because it doesn't have to be changed every 90 hours. It was sad though because he couldn't eat past midnight. He was up most of the night crying and wiggling because he was so hungry. Thankfully the nurses here are awesome and so whenever I would get stressed she would come in and help me.

The PICC thing was tough on the little man. They had to sedate him and I guess he did well with that. I had to sit in the waiting room and that was a totally new experience for me. Usually I stay by him the whole time but not this time. It's was difficult to leave my baby laying on a bed in the middle of a big room with lots of people he didn't know. I had to cry on the way out because I felt like i was abandoning him.

When we got back from the procedure Luke was ready to eat but his therapist came in to give him a breathing treatment. She didn't want him to eat first so he threw a hour long back arching bloodcurdling scream temper tantrum. It was tough because I was the one holding him down and I had to make sure that he wasn't hurting himself.

Thankfully, I finally fed him and then gave him a bath. Now he is sleeping in his crib all tuckered out. He's such a sweetheart (although I wouldn't have said that at 4am last night).

65 Roses

I have had a rough week this past week. It all started last week whenever Luke was in the hospital.

The doctors decided to run a test that they really didn't think was necessary but needed to rule it out anyway. They took Luke's blood and told us to wait a few weeks for those test results.

Luke was scheduled for an early morning dr appointment on Tuesday so that we could follow up with the dr. A nurse called us Monday afternoon and said that Luke's primary physician wanted to see him and that they wanted BOTH Dan and I to be there.

Right away I knew what it was. I was right too. The doctor sat us down and proceeded to tell us that Luke has a life-threatening disorder where the mucous in his body is too think and can't be expelled from his body. That was why he has been in the hospital so much lately. He can't get the mucous out. The disorder was also causing him to not gain weight and so that was why my 5 month old was the size of a 2 month old.

Luke has Cystic Fibrosis and while I know that it is not a death sentence I do know that it is life altering. The life span for someone with CF is 35. I pray that by the time Luke is that old they will have come even further in the technology and research and he can be healthier for longer.

I don't know what is going to happen but I do know that God is still Sovereign and there is a reason for this all. I believe that God can use Dan and I to be witnesses to the countless doctors and nurses that will work on Luke in his lifetime. We want Luke to live a fulfilling life and not be weighted down with his illness. In fact, I have heard other CF parents call CF a blessing so that their children feel better about it. Maybe I will call it that now....


Here's my little man receiving a breathing treatment. We do this a few times a day.

It's the Weekend!

Yay! It's Friday afternoon and I super stoked about the weekend. I think that I want to have some downtime and enjoy my family. Of course, I think that I am going to spend most of the time cleaning though. How depressing :(

Oh no! I just realized that I have to sing on Sunday! I guess I may not have the weekend I thought that I would have.

A Fun little Quiz

Oh my! Lucy has always annoyed me.

Yes. I did this because Sarah did :)

Which Chronicles of Narnia character are you most like? created with QuizFarm.com

You scored as Lucy Pevensie Lucy Pevensie 83% Peter Pevensie 80% Mr. Beaver 80% Aslan 70% Oreius 67% Edmund Pevensie 50% Susan Pevensie 37% Mr. Tumnus 30% Mrs. Beaver 30% Ginarrbrik 27% The White Witch 23%

Where I have been

I am sorry that it has been so long since the last time that I blogged but I have had a super insane life lately.

First- I am now working 3 days a week. Luke is staying with a single mom in our church that just lost her job and it is working out great for both of us. She does an excellent job with him and he is so happy whenever he is there. I am getting to make a little extra money too and get out of the house for a few hours. I think that I might not go insane anymore.

Second- Luke has been in the hospital 2 times in the last week. His cough and wheezing just will not go away. He had a spot (fluid/infiltrate) on his lungs a month ago whenever he was hospitalized and that should have been gone by now. Unfortunately, that one is still there and he has 2 more besides! The poor little man.

They sent out a Cystic Fibrosis test but it will be several weeks before we know the result. I am praying that it is negative but all of the other tests have been negative and there is nothing else that it could be. For the time though he is on antibiotics even though I doubt they will work because it is his 4th round of them. I am still giving him nebulizer treatments and trying to clear his passageways. I am trying to keep myself busy so that I don't have to think about the results. I am praying for a negative.

That's pretty much my life. I have a hard time blogging because I need to take a vacation but I think that maybe my life may slow down a bit.

Now, to find the odd smell in this room. Dan leaves food everywhere when I am gone and I think that he left some food to go bad.Ick!

Here's a picture of me and my cutie!