We are home! I am super busy trying to get caught up on everything but wanted to let you know that we are home. Wahoo for a short stay :)
... Children's Memorial Hospital. Oh the joy! Luke has had a nasty cough for awhile now and he doesn't seem to be responding to oral anitbiotics. He just go his PICC placed a few hours ago and so now we are waiting for his respitory therapist to show up.
We have been here since yesterday but we are probably going home on Thursday. He will be going home on iv's but that is much better than staying in the hospital.
I have been reading the blog 5 Minutes for Special Needs for quite a while. I was quite shocked when Deb contacted me asking if I would be willing to be interviewed for a segment that they run every Sunday. I don't even know how she found me!
I was very willing to do it because I will do anything to raise CF awareness. You can go over and check it out. Here it is I now see many typos that I missed so please excuse those. I guess I didn't proofread very well.
I feel very honored and I am glad that I got this opportunity.
I got an ultrasound done on Wednesday and I thought that I would share some pictures.
The little Princess was moving a lot so we only get a few good pictures and we didn't really get any good 4D ones. I was very excited that I got to see her on the 4D though! I don't really think that she looks like Luke all that much but we will see!
So what does the husband of a pregnant lady get her wife for Valentine's Day?
Junk food of course! Dan surprised me with Reese's, Gardettos, Oreos, and chips and cheese dip. Only a man who truly knows his wife would have gotten that. I really didn't care about flowers, my sense of smell is in overdrive anyways, so I was super stoked when I received the food.
We also went to my sister's church for a Valentine's banquet and we enjoyed that a lot. We spent the night in a nice hotel (that I only spent $45 on with name your own price on Priceline) and then spent the day with my mom, stepdad, sister and her family, brother and his finacee, and my younger sister. It was a good weekend and Dan and I both said that we really liked it!
I will leave you with how Lukie thinks that you eat a Reese's when you are very hungry. 
Who needs to take the paper off? It gives a little more fiber :)
I just realized that my last post was my 100th post. How ironic is that! In that post it was one year to the day Luke was dx and I talked about how our little girl is CF free. I didn't realize at the time of writing that it was my 100th post. I just noticed it today when I went to check my dashboard.
Anyways, I am babysitting a sweet little girl today so I can't be online much. Two little 1 yr olds can keep a woman busy. Have a great Valentines Day!
One year ago today we received the news that would change our life. I remember that there was a horrible snowstorm and we were so late to get to the dr's office. The office was closed and everything because we got there so late but the dr stayed so that she could tell us that Luke had Cystic Fibrosis. It was a tough day but I would like to think that we survived this first year pretty well.
We have experienced ER visits, 5 hospital stays, 7 PICC lines (that includes 3 that were torn out), and many clinic visits. Luke is happy now though. Luke looks like any other child out on the street. I don't get the shocked looks whenever I tell people his age and it doesn't make my family and friends nervous anymore every time he breathes. It's amazing what the right diagnosis did for the little guy.
I won't say that it hasn't been a struggle. It has. It's just that we have trusted in God throughout it all and I have learned that just when you think that you can't go on, you can. God ALWAYS pulls us through. I won't say that I haven't cried and been frustrated. I have. There have been times like I feel that all I have done is cry that day because Luke is sick or he had so many treatments that day that I didn't even have time to take a shower.
It has gotten much better in the past few months and some days I feel completely 'normal' (whatever that term means). There are days that I forget that Luke has something wrong with his little body and I just go through the motions not realizing that I am saving his life while I do it.
I know that we still have many, many years ahead of us that we are going to have to fight this disease but I feel that this past year has already equipped us to do it. There will be new obstacles that we have to face and there will be new challenges that scare us and bring us back to the Master's feet to weep and pray. However, I know that just when you think it's not going to end and that you can't handle it anymore, you can. You always can.
This is not completely without rejoicing though! Yesterday we found out that our little girl doesn't have CF. What an answer to prayer! It's very odd that this came exactly a year almost to the day that we got the diagnosis about Luke. It's such an awesome God to let us know that He is still caring for us and loving us. God is good and even if she had been diagnosed with having 2 mutations (she has one and is a carrier) I would still be saying, God is good!
I haven't done one of these in awhile so I figured today would be a good day to start again :)
This is Luke after eating some of Uncle John's birthday cake. Every CF dietician's dream!
I think that my belly has grown a little or at least morphed a bit. It's not quite so pointy and more like a baby belly. I am a little glad about that but now I am getting the 'belly pats' if you know what I mean. I don't mind my family touching my belly but people I barely know? Come on! You wouldn't touch it if there wasn't a baby in there.
BTW- That isn't my pink underwear that is a pink undershirt, it must have popped out and I didn't feel like retaking the picture.
I have been keeping a little secret :) We found out what we are having a few weeks ago (still waiting on the CF results though). I don't think that I have goofed up on here and said but I will say now.
We are having a beautiful....GIRL!
We are very excited about a little girl. We would have been happy with a boy though so either way I would have been excited :)
As most of you know doing breathing treatments with Luke is not always fun. He fights you to the death! He can not stand to wear the mask. Lately we realized that Luke is getting more interested in cartoons, something that he's never really been into. We started doing his treatments with him on our lap while we held the mask and he became a different baby. He would talk to the show, sit still, and be all around very good for us! This came as a huge shock to me because I was used to fighting and singing at the top of my lungs as I valiantly tried to hold the mask on the squirming, thrashing face of my child.
Well, Saturday he did it all by himself! I put him in the chair and put a show on, then I walked away. Do you know what he did? NOTHING! He sat there the whole time and quietly waited for his treatment to be done. At one point the mask fell off of his face and he actually HELD it to his face! Actually, after letting him do it himself a few times we have learned that he likes holding it better than when we use the strap.
This makes my life so much easier for so many different reasons. I feel like breathing treatment time has gone from a negative time to a positive time. He loves to watch tv and now that we aren't fighting him, he can actually enjoy it. It frees up a lot of my time. This morning I was able to pick up the entire house before his treatments were done! Well, he is on TOBI right now which takes quite a while to nebulize but it still was great.
The funniest thing is that Luke knows when the treatment is done. As soon as the medicine is done he pulls it off and says all done. He then patiently waits for my to turn off the compressor before he gets out of his chair. Now all we need is the vest and then I won't even have to do PT! How awesome will that be :)
Here's the little champ holding his neb himself.
