Fighting Cystic Fibrosis One Day at a Time

Putting One foot in Front of the Other

2010-05-20T16:27:00.003-05:00

When Luke is in the hospital and then the preceding week and a half or so after he is discharged I never feel quite in control of life. It's rather irritating but I have learned that I can just float along as the waves crash. Sometimes it's rough, like today, but I have learned that in my weakness, physically and spiritually, I can make it when I call on Christ for strength.

Sometimes people say that I handle things well and that they admire my strength. I have yet to understand this. Maybe it is because I was raised by sacrificing parents but I don't see how I could NOT do what I am doing. Sure, there are days that I feel like giving up but one foot in front of the other and keep plodding along. The song from Finding Nemo often pops into my head on days when every time I pass my bed I long to crawl into it.

Today is a tired day. That is why I have a hard time when Lukie is on IV's. I get almost no sleep. I am working on having grace even when I was up late at night and then awoken by my laughing, loud toddler at 6.30 am. I believe that I got 4 hours last night and they weren't even consecutive hours. This is totally normal for the weeks after a stay. The infusion schedule is such that trying to go to bed while infusions are running is just senseless.

Today I feel weak. Today I am holding onto the hope that 'when I am weak, then am I made strong'.

So today I will keep plodding along. I will keep watching the kids. I will make supper. I will maybe even run. Maybe today I will keep moving forward because there is no other way for me to go. And honestly, I am enjoying this because someday in the future, my children won't be here and I will have all the time in the world to sleep. Until then though.... 'just keep swimming, just keep swimming...'

PS- We are walking in Great Strides on Saturday to raise money for a cure :) Please consider donating any amount to the CFF in Luke's Legions name. You can click on the Great Strides widget on the side to make a donation. Thank you. Everything helps us find a cure :)

Change of plans!

2010-05-15T18:48:00.002-05:00

Today we were supposed to be doing family things and in a way we did. We took Lukie to the hospital together!

Luke is going to be in a for a few days (hopefully only a few) to be cleaning out his system. He is not super sick, just has a cough that he can't seem to shake. Poor little guy :(

He is all nice and settled in on his favorite floor with his favorite nurses. I think he actually enjoys being in the hospital because of all the attention that he receives.

Tonight he is spending the night with Daddy and me and Ana are going to have a girls night here at home. I can't believe how quiet my house can be without Luke! He sure is loud.

Anyways, if anything big happens (which I am praying doesn't) I will try to keep my blog updated about. Have a great weekend!

Wordless Wednesday- Peace

2010-05-12T11:06:00.002-05:00

What My Children Have Taught Me

2010-05-10T10:09:00.002-05:00

Lately I have been thinking a lot about areas of my life that need change. Some of these areas are pretty basic. I have allowed many things into my life that have caused bad roots to take hold of my heart. I am striving (by God's grace) to rid myself of them.

Some of these things I have learned not from hearing amazing messages from the pulpit, although I assure you that God has brought some amazing teachers into my life, but I have learned these things from my children. I spend almost 24/7 with my children. I wake to the sound of Luke breaking eggs into the couch (long story) and before I go to bed I hook Luke up to his feeding tube. I am constantly around them and I love to observe them playing and interacting with each other.

The first thing that I am learning from them is patience. I do not mean that they are teaching me patience though. What I mean is that I see in them the impatience in my own life. There will be times that I discipline Luke because he wants his food right this instant. Luke will throw a royal tantrum because he is getting the food he wants but not in the time frame that he wants it. I am working on it, just not fast enough for him.

That is when I see myself in him. That is when I am ashamed. I also throw royal tantrums when I do not get my way fast enought. I act just like a 2 yr old who wants it his way or else. I am blessed with a longsuffering husband but I fear that over the years I have abused that facet of his personality. I have caused him much grief by figuratively throwing myself on the ground and then proceeding to kick and scream. Usually, he acquiesces. Not because he is a push over but because he is self sacrificing and a peacemaker.

I am praying that God will help me overcome my lack of patience. Things don't always move in a timely manner and that is life. The world is NOT on my time table. I wish it were and that I didn't have to wait for my husband to come home from work, or didn't have to wait for and hour in the Dr's waiting room. Unfortunately, these are all normal occurrences. Life happens and God has given me the grace to deal with it. However, I usually try to handle it in my own strength and fall flat on my face. I am resting in the fact that even though I will still fail in the future, God can bring me through this vice in my life.

Ecc 7:8 Better is the end of a thing than its beginning, and the patient in spirit is better than the proud in spirit.

1Cr 13: Love is patient and kind; love does not envy or boast; it is not arrogant

Rom 8:24For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for?
Rom 8:25 But if we hope for that we see not, [then] do we with patience wait for [it].
Rom 8:26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.
Rom 8:27 And he that searcheth the hearts knoweth what [is] the mind of the Spirit, because he maketh intercession for the saints according to [the will of] God.
Rom 8:28 And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose

Just trying to Survive... and to change

2010-05-06T11:35:00.003-05:00

Lately I feel like I am just barely keeping my head above water. That is why I have not posted in awhile :(

I am finally caught up on laundry, my house in some semblance of cleanliness, and Luke is on his VEST. It is time to blog.

Lately my life has been chaotic and tumultuous. There are things that have happened that I am not proud of but we have moved on and are now flowing into the ebb of our family life and the new schedule that we have.

Why do we have a new schedule? Dan got a new job in the City. So that means that he has quite the commute. He isn't home very much so almost all of the taking care of the kids falls on me. I am fine with this. A few months ago I may have balked at the idea and protested, thinking that it's my right to have a break. That I should be allowed some freedom. I don't really view motherhood like that anymore. I now view motherhood as my ministry. It is my job and I enjoy doing it. I am finding that the more I am thankful and appreciative of my children the less I freak out if things don't go according to plan.

I still have my meltdowns and I still feel like giving up some days but God is giving me the grace to get through and I feel that I am finally realizing the power of grace in our lives. I am praying that my new appreciation and understanding of grace will help me to extend grace to others and to not get so worked up over the little things.

Grace abounds in the chief of sinners and I can testify to this fact. I also know that since grace has been extended to me, it's now my turn to extend grace to others. I am now choosing to overlook others faults and sins and love them for who they can be and what God can do in their lives. Being judgmental and harsh is something that I am shunning. I am going to strive to show grace to others so that through my grace showing they will see a teeniest, tiniest example of grace that God extends to those that He calls.

I am hoping that over the next few months/years I will build a stronger base of my theological views. I used to think that knowing theology was prideful, that when people spewed off all of the -ism's that they were just showing off. I now know differently. Knowing what I believe is just as important as believing. I am not willing to be blind and ignorant anymore.

I finally feel the freedom to become theologically sound without the fear that what I am doing is something that only men do. That is a lie and I feel it is a reason that there are so many weak and fickle women in the Christian realm. I am NOT choosing to be taken with every wind and doctrine. Instead I am choosing to become knowledgeable so that I can then teach these truths to my most important undertaking. My children.

This may be disjointed and it may be weak but I will never claim to be a writer. I am just a woman (although I feel like a girl) that is trying to experience a deeper, more meaningful walk with her Savior.

Just Because

2010-01-14T13:34:00.009-06:00

I decided to upload a few new pictures just because it's been awhile.

Here's Ana thinking that she has a strange Mommy :)

Luke playing at his appointment on Tuesday and yes, I cleaned the entire thing with a disinfectant wipe before I let him touch it :)

We have been dealing with icky noses lately and this is just one of the many times that I needed to wipe Luke Man's nose.

Frustrating Clinic

2010-01-12T15:27:00.002-06:00

So this might turn into a mini rant so if you read this whole post I am quite impressed.

Today was a baaaad clinic visit. Medically, mentally, and physically (well, for Luke anyways). We have been keeping a close eye on Luke's weight and I know that I have mentioned it before on here. I have been feeding him super high fat and calorie foods, giving him 3 scandishakes a day, and always giving him milk before naps, bed, and with dinner. However, I knew his weight was not changing. I had set him up a profile on Wii Fit and have been keeping track of his weight. He still can't seem to pull past 25 lbs.

I was hoping that the same thing would happen at clinic that has happened before. They tell me to keep giving him high cal/protein/ fat foods and scandishakes. They didn't do that. Eileen came in very serious. I hate when people are serious. She is very concerned that Luke has some underlying issue that is going on that she can't put her finger on.

They think he might have diabetes or Celiacs. I know that Celiacs is treatable and that if kept on a the right diet totally manageable. It's just frustrating to think that Luke has to deal with CF and a digestive issue. Besides,(most) gluten free foods taste nasty and I feel for the child! I did gluten free diet for awhile and it was not yummy!

I have a feeling that he doesn't have it though. Which wouldn't exactly be a good thing.

If all the blood tests they did today come back negative Luke is more than likely getting a g-tube placed. I don't know how I am going to manage that. Remember, Luke pulls PICC's out. I have no idea how he will handle a g-tube. Not to mention he is in a big boy bed and all I can imagine is him getting up in the middle of the night and being attached and pulling it out.

Luke has had a total reversal it seems. In the beginning he gained like a champ but he had serious lung issues. Now it's changed and Luke's lungs are extremely clear but he hasn't gained weight in a year.

He looks and acts sooo normal. He's happy and loooves to eat. The kid can plow through a McDonalds Happy Meal quicker than I can eat a Big Mac and that's pretty fast!!

I am a control freak. Pure and simple. I know it. Dan knows it. Most people who meet me know it. I am having issues dealing with the fact that I can't control Luke's weight gain.

I see other CF kids seeming to do fine. No g-tubes, no ports, no extra 'underlying' problems. I feel like Luke got a raw deal.

What kills me is that I can't help him. I have tried and I failed. I feel like the biggest failure ever. I can't even make me son gain weight. I pump about 2500 calories into Luke every day. 1800 of those are from Scandishakes. It's impossible for me to give him any more calories. I make the fattiest meals, I give him the fattiest drinks. Nothing works.

I don't know. Maybe none of this makes sense. Maybe I am not getting my thoughts across. I never have been linguistically gifted.

I am just overwhelmed right now.

This could all be getting to me because I have a cold and am exhausted. I think that I have been pushing myself too hard but unless I do something, it never gets done. Dan tries to help but he has work responsibilities and we REALLY need every paycheck so I don't want him to compromise his job in any way.

It's stinks because even if all the tests come back negative I know that he will probably still have to undergo surgery and deal with all the crap that a g-tube brings.

I don't even know what to think. What do I hope for?? Celiacs?? Diabetes?? G-tube?? None of them sound good.

I just wish it could all go away.

Seriously, we need a stinkin cure. Like now.

Randomness

2009-12-19T23:28:00.002-06:00

Not much going on over here and that is quite a good thing for us!

Dan has been working insane hours so I have been home with the kids quite a bit. I think that maybe that is helping with Luke's sickness. Since I am not taking him to as many places as I normally do I think he is not being exposed to as many sick bugs. If secluding ourselves all winter is what it takes to stay out of the hospital then secluded we will stay! I am really not into having a hospital stay right now.

Ana is growing, growing, growing. I am only nursing 1-2 times a day now but I am okay with that. She now eats avocados and sweet potatoes but will be starting carrots soon.I am still making her food thanks to the Beaba BabyCook that my pastor's wife loaned me. That thing is amAAAAAzing!

Anywho. Will check back in soon! Well, maybe as soon as Christmas is over :)

Breathe

2009-11-30T16:17:00.003-06:00

I found this song/project and I am so amazed! It is so wonderful.

Here is the trailer for it.

You can see the full length video and all also read up on Matt Scales and the amazing singers in this song on this site

Be prepared to cry. I know that my eyes didn't stay dry.

Uh oh!!!

2009-11-28T21:51:00.002-06:00

So it looks like Luke is getting very sick :(
He has a nasty runny nose and he has green snot. Those are pretty much signs that he is on the way to the hospital. I am hoping that we caught it early enough and that he will be able to stay out of the hospital. It seems that since he has started getting older that he is being able to shake off a cold much better.

In other news we had a great Thanksgiving and really enjoyed seeing all of our relatives.

I put up our Christmas tree today and now we have to get busy on Christmas shopping. I just can't seem to get up the energy. Oh well, I have a few more weeks still :)

2009-11-24T09:37:00.002-06:00

Happy Thanksgiving!

Okay, so I am a few days early but I know that the next few days will probably be pretty crazy so I wanted to post a few things that I am thankful for this year :)

~My God and Savior, where would I be without Him?
~My wonderful Husband, Dan is so understanding and compassionate
~My children, they bring me so much joy every day
~My mom and stepdad, I know that I bug my mom on the phone but she really is my rock
~My siblings, I was blessed with such an amazing family!
~Medical Advances
~Music

These are just a few but there are oh so many more that I could write down.

I hope to be back on sometime soon.
I really do want to keep up with my blog again :)

Here's a little something to make your day a little bit better.
Every time I see this little girl she makes my heart melt just a little bit.

A late night Update :)

2009-11-21T21:50:00.005-06:00

I am still here!!! It seems like life is so much crazier with a toddler and an infant. Some days I can't believe how quickly the time flies by now.

Ana is almost 5 months now and is doing great. She is 13 lbs and in the 25% for her weight and 60% for her height. Lukie has never had numbers that high!! She definitely got my genes in then height department :) She can roll over both ways and reaches for things. I have decided to wait on starting solids and then I plan on starting with avocados. I think that might be better for her digestive system. I tried to give her cereal when the DR told me too but she screamed for a day or two after I tried because she became so constipated. I felt really bad for her. She sleeps through the night most nights and overall is an excellent baby. I love her to pieces!

Luke is doing really well too. He has been dropping weight wise but his lung health is superb! I am afraid that he is getting a little junky but I am going to call in for an antibiotic on Monday and I think that should clear him out. He is almost potty trained and I am quite happy with that! He is being such a good boy and I am so proud of him. He talks quite a bit now too. We don't understand a lot of what he is saying but we understand enough to get the gist of what he is trying to say.

Here are a few pictures that we recently had taken. I can't wait to receive the rest of them!

We had them taken by Courtney Fisk of Elle Photography. If you want to check her out and maybe book a session with her. Here'sher blog

I love them and she made our experience wonderful! We will definitely be using her again :)

I should probably change my ticker....

2009-07-10T21:09:00.002-05:00

..and blog more :)

Just wanted to inform the few people who check in every once in awhile (sorry, I know that I am not too interesting lately) that our little girl has made her appearance.

Analeigh Grace was born June 30th. She weighed in at 6 lbs 1oz and was 19 and a half inches long. She is such a cutie and we feel so blessed to have her with us.

Luke is doing okay with the new baby. I see a few behavioral issues that I have never seen before but I am hoping that with time he will accept his sister a little bit better. It must be hard to go from being the only child to having your mom spending so much time feeding and taking care of another little person.

Luke's health has been pretty good lately. He has been fighting a nasty cough but I am not overly concerned about it. I think that it will calm down in a little bit. I think that the past few weeks have been a little rough on him and I am hoping that as life settles down so does his cough. He is on antibiotics for them at the moment and I think that will help keep anything icky at bay. I really don't feel up to a hospital stay right now.

Here are a few pictures of little Ana. hope that you enjoy!

Update and Great Strides

2009-05-15T13:31:00.003-05:00

We are home! We actually have been for a week but I am just now getting around to posting. Luke's port is safely in place and doesn't seem to bother him at all. The surgery to place it was so easy and Luke had no problems with the anesthesia. I think that the Dr's scared me more than was necessary :)

Luke's cough is much better and I am hoping it stays that way for awhile. I don't want another hospital stay till Baby has been born and is able to walk. Overall I would say that we are at a 'resting' point. Everything seems to be okay and we are just living life.

Tomorrow is a big day though! We are walking in the Schaumburg Great Strides walk and hoping to raise more money for Cystic Fibrosis research. A cure is so close and the CFF needs all the funds they can get to continue with the expensive clinical trials.

I am asking that you donate something to my Great Strides campaign if it is possible for you. It would mean so much to us. Any amount is helpful and nothing is too small. You can donate by clicking the button on the side or going here

It should be fun tomorrow and I will post pictures so you can all see what happens at a walk. I may have to borrow someone's camera though because ours just pooped out. Not cool....

Anyways, I took a couple of pics today with my camera phone. Try not to look too closely at my messy bathroom (going to scrub it down after posting this) or my sheer shirt. Tomorrow I will be wearing another shirt under it, don't worry. Also, I know it is not a maternity shirt. I decided that I wanted to wear it even after I was pregnant so a maternity shirt probably wouldn't work for that. Oh well, the shirt shows off Luke's little sister (who is doing great btw).

30 Weeks- Only 10 more to go!

Awwww, Home!

2009-05-01T23:55:00.003-05:00

I am only home for the night but boy does it feel good! Dan is staying the night with Luke and I am catching up on laundry and sleep.

Speaking of sleep, I think that I am going to go enjoy some :)

I will leave you with a picture of Luke being super bored during an antibiotic infusion.

And also Luke looking out his hospital room door. He knows that he is not supposed to leave the room so he will spend quite a bit of time just looking out at everyone walking in the hallways. It's really cute :)

PICC's. Ports, and Poop

2009-04-29T15:44:00.003-05:00

I have been horrible at updating but I do have a reason for it! Luke was admitted to the hospital last Wednesday and it has been a roller coaster ride since then. Nothing has come easy this stay for my poor baby. To say that this has been a rough stay emotionally and physically for both Luke and I would be an understatement.

I knew that this stay would be different when they were not able to place his normal arm PICC last Wednesday. Luke's vessels nears his heart have become too narrowed from repeated PICC's and so he can no longer receive PICC's in his arm. Because of this little problem Luke had to get one placed a few days later in his femerol/groin area. They don't allow people to go home with that kind in place so we are going to be here for another week still.

We do not want to have to deal with 2 week stays every time that he gets sick (the vessels won't be good for awhile) and so wee are planning Luke getting a port in the coming week. The surgeon doesn't want to put Luke under until he has finished his antibiotics and that won't be until next Wednesday.

The other issue that Little Man had to deal with was that he contracted Rotavirus and so he was very sick last weekend. He was running a high fever, had diarrhea, was vomiting everything that he ate or drank. I felt so bad for him because I had never seen him like that. He just laid around and didn't even talk. He didn't care if you were holding him or if he was laying on the floor. I have never seen Luke that lethargic or sick. The doctors didn't tell me but they were considering moving him to the ICU if his fever didn't come down. His heart rate was close to 200 and his respirations were very high too.

It's been a few days since his fever broke and he is doing much better. He is still a little irritable but that is to be expected when a 20 month old is stuck in a hospital and not allowed to leave his room.

Luke's new odd thing is that his teeth are turning gray. Yes, that is very odd. Apparently his Iron is low and so they are giving him iron supplements 3 times a day. That is the only thing that could possibly be turning his teeth gray. The Resident is going to be talking with a dentist so hopefully we will have some answers soon. I would really like to know if this is going to be permanent. My poor child will scare all the girls away with his smile!

I will try and post more often but like I have said before, I make no promises :)

I am here!

2009-04-20T21:28:00.002-05:00

My cousin pointed out to me that I have not blogged since March. I guess I didn't realize how long it had been since I had taken the time to write down what's going on.

Life is pretty mundane right now and I am completely fine with that. We are busy with doctor appointments and some tests that Luke is having done but other than that life is in a nice pattern. We are trying to figure out why he has a cough but we can't seem to find out what's going on. He has had quite a few x-rays and blood draws along with some extra cultures but everything has shown up clear. His dr has switched some of his meds around and made other prescriptions stronger but still nothing is helping. In fact, right now his poor voice is raspy and going out on him because of all the coughing. His lungs do sound clear though so we think that everything must be going okay with the lungs. Tomorrow I will be calling to check on his cultures so we will know more then.

On Wednesday I am taking him back to CMH so that he can get a speech-swallow study done. Basically that is where they have him drink some kind of drink and then you can watch it go down as the x-ray him while he drinks. No, that is not a good explanation but hopefully you get the picture. He has had this done several times before and the other times he got it done it did show aspiration. The last time however it came back clear so hopefully it will be clear again. However, if it did come back that he is 'silently aspirating' that would explain the cough.

We had some friends over for a great Easter weekend and it was nice to catch up with them.

On the baby front things are great. She is very active and kicking :) I just had an OB appointment today and that went well. Midwife thinks everything looks healthy so I am going to believe her. I am still leaking protein in my urine but she isn't too concerned about that because my BP is great.

I have also been very busy with trying to get everything ready for Great Strides. I am walking in the May 16th Schaumburg Great Strides and I really want to raise more than we did last year. You can help us meet this goal by clicking on the widget on the side of my blog. I really appreciate every penny that people donate. It means so much to me and my family. We are also raising funds with t-shirts this year. You can buy them at www.cafepress.com/lukeslegion. A portion of the sales price will be going to the CFF. Dan designed them and I love them! He isn't too happy with them but I don't care. I like them :)

I hope all is going well with everyone and I plan on catching up with some blogs tonight. Toodles!

Totally Understandable!

2009-03-28T21:59:00.004-05:00

Please read this blog entry by Baby Stellan's mom MckMama. I feel that it totally epitomizes what I have gone through with Luke in the past. Just take out the SVT talk and put in lung gunkiness talk (yes, I just made that phrase up).

Please keep praying for little Stellan. I know that his family will appreciate it.

Read and please try to understand how hard this is on the whole family right now.

Please Pray!

2009-03-25T12:31:00.003-05:00

I have been following Mckmama for some time now and I really enjoy her blog.

Her sweet little boy has been having tachycardia for several days now and just recently switched into v-tach. Please visit her blog and pray for them today. This is their miracle baby and I know that they are praying he will be completely healed from this heart problem. Thank you in advance :)

Oops!

2009-03-18T09:07:00.001-05:00

I forgot to post this the other day. I hope that you enjoy it as much as I did :)

Wordless Wednesday- Park Time!

2009-03-18T09:00:00.001-05:00

Gotta love the swing :)

A Pirate?

2009-03-12T09:30:00.003-05:00

No! It's just Lukie with his eye patch on! The eye dr wants him to use an eye patch for awhile but it looks like he is going to be having surgery in a few months. His eyes are misaligned and so they need to fix them. I honestly don't completely understand what is going on but I am going to trust the eye dr on this one.

The weird thing is that his eyes are still dilated! He got them dilated at 2.30 yesterday and this morning they are still wide as saucers. I wasn't going to place the patch over his eye but he seemed to be doing a little better and since I want him to get used to it I decided to stick it on there. He fussed at first but then left it alone and went back to watching tv. I am supposed to get him to play with toys and looks at books but considering the morning that we are having I think we are going to be happy with watching tv and no crying.

Clinic Update

2009-03-11T10:02:00.002-05:00

Just wanted to update everyone on Luke's latest excursion to see his favorite people, his CF dr and nurses! I really am starting to think that they are his favorite people too :)

Anyways, he has gained a whole kilogram since last visit (about 2.2 lbs) and so they were very happy about that. Even though he is on a hunger strike right now they didn't seem too concerned about it. They feel it is because he is getting about 4-6 teeth right now. Poor little guy :(

They really don't think that the wheezing and coughing that has been going on is due to CF and in fact they feel that it is an asthma component. It wouldn't really surprise me because it runs on Dan's side. They started him on Singulair and they feel that the Flovent he started 2 weeks ago will make a huge difference. We just have to give the Flovent another 2-3 weeks to start fully working though.

He got his PICC line pulled so that was huge for us! I hate having that thing on his arm. I know it is there for a reason but have you ever tried to keep an 18 month old clean? It's nearly impossible! Trying to give him baths is an epic fail because he can't get his line wet and wrapping it in a diaper doesn't even keep it dry when a little 18 month old decides to splash. Needless to say, he is about to take a nice long soak in the tub.

Today we have an appointment to go to the Wheaton Eye Clinic for his lazy eye. I have no idea what is going to happen there. They did tell me to prepare for a 2 hour visit so I guess I am going to have to pack the boys room. Keeping him entertained is quite an ordeal! Hopefully we will know more about what they are going to do for his eye by the end of the day.

AAAAAHHHHHH!!

2009-03-08T23:51:00.002-05:00

My title says it all! This past weekend I have been feeling so overwhelmed. I think that it might be the 2am iv infusions or maybe the fact that I can't seem to get any energy during the day to clean, do laundry, and cook so my house is pretty much a disaster. Add to all of those things that Luke has decided to assert his independence quite frequently and I feel like my head is going to explode. Oh yes, and speaking of heads about to explode, that really is from the headache that I have been fighting since Tuesday. It just won't go away!

I really don't want to sound like a whiner but this is just so hard sometimes. Being pregnant and taking care of a high needs child is much more difficult than I thought that it would be. I am having one of those weekends where I wish that my family lived 5 minutes away so that I could just have my sister over and I could sleep for longer than 5 minutes at a time. Whenever Luke has his pic line I never feel quite right sleeping because I know that he could be in the other room pulling his pic line out. I feel like I am sleeping with one eye open.

It's been nice having Dan home but it went by so fast. Tomorrow is back to the grind of taking care of Luke Man all by myself. I am sure that tomorrow morning I will be feeling better and Tuesday I will be feeling much, much better because he will no longer have his pic line. I think that I just need some sleep. Right now I feel like I could sleep for a year. I probably should be sleeping right now but I have some things to do before bed. I finally understand why people say that there aren't enough hours in the day.

I will stop being a whiner now but while I am whining I will add that I have been a little discouraged because very few people have signed up for the Great Strides walk. I really want Luke's Legion to be awesome this year but it can't really happen if nobody shows! I know that there are a lot of people who say that they are going to sign up and donate and I know that I should be patient but I am having a bad week and I think that just compounded it. I am sure that there will be a good response, I just hope that we can raise a decent amount of money this year. The cure could be found this year but the CFF needs the resources to research everything. If anyone has some good fundraising ideas please let me know! I am all for it :)

I hope that everyone has a good week. I hope to be on more this week because Luke has clinic on Tuesday and we will know more about how his liver is doing. I am curious about his weight too. I think that he has gained a little since being home. He's quite the chunker!

Cystic Fibrosis Foundation

2009-03-05T12:45:00.001-06:00

Please consider donating to Luke's Legion. For more info check out http://cff.org/great_strides/courtnieallen6137.

Thank you.

Halfway There!

2009-03-03T15:25:00.002-06:00

So today I am officially to halfway to the end of my pregnancy. I really hope that the second half goes by faster than the first half.

I am still doing okay on gaining weight. That is such a good thing because I started out a lot heavier than I was when I got pregnant with Luke.

I can feel her move every day and I am loving the feeling.

Everything else is going smooth. I am having some proteinuria (protein in the urine) but I had that with Luke and nothing really happened.

Here ya go! Please try not to laugh at my grungy appearance.

Frustrations

2009-03-02T10:57:00.002-06:00

I haven't really posted that much because of some things in our personal lives but this morning I decided to share some thoughts that I have been having.

The biggest issue that I have right now is about pediatricians. Why is it that I have such a hard time finding a ped that has a rudimentary understanding of CF? Seriously, the last 4 peds that we have gone to have no idea what I am talking about all the time. They constantly want to go against what Luke's CF dr's want and treat like I am stupid if I don't take him off his reflux meds or cut back on his calories. No, Luke does not have reflux anymore BUT (bit but here) they help his body absorb the enzymes better. I had stopped giving him them at one point (due to info the ped told me) and his weight suffered. I didn't realize that was probably the problem until he was admitted in January and his weight rocketed in the week he was there, mainly because he was back on reflux meds. Cutting calories is just stupid for a CFer. Seriously, he needs a little storage of fat for when puberty hits (yes, I like to plan ahead).

So, we are switching back to Luke's first dr. It's actually a Family Practice Residency Program but Luke's CF dr's feel that considering they saw him when he was super sick they know all the warning signs. Also, when Luke was diagnosed his resident did some serious research into CF. She will be leaving this summer so that kinda stinks but hopefully she can impart some of her knowledge to other people. She's a great dr and I wouldn't mind following her wherever she goes :)

The other thing that has been weighing heavily on my mind is some test results that Luke had come back. Apparently his Liver enzymes are crazy high (4x's what they should be). They did an ultrasound and ran some more blood tests but everything came back somewhat normal (intersting fact- CFers have a small Gallbladder, don't really know why but the ultrasound tech freaked out about it and then the CF dr's had to tell me that is normal, kinda odd).

For right now we are waiting. We are waiting to see what happens after whatever he is sick with is out of his system. He will be getting another blood draw next Tuesday and we will know more after that blood draw. I know that some CF patients have problems with their livers but I am really hoping and praying that this is just because of the virus running through his little body.

I really don't like waiting, it's not fun but I know that through this I am going to learn a huuuuge lesson in letting go of control. I don't always have to know what is going on. I can put this one in God's hands and also in the Dr's hands and not worry about it :)

Oh, and here is a picture of what a relaxed little boy looks like while he is getting his TOBI treatment. No, the picture isn't blurry, the smoky look is actually the 'smoke' from the TOBI. It fills up the room everytime that we do it.

TaDa!!!

2009-02-27T12:01:00.001-06:00

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 :)

Where we are

2009-02-24T12:02:00.002-06:00

... 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.

5 Minutes for Special Needs

2009-02-22T23:14:00.003-06:00

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.

Here she is!

2009-02-20T09:08:00.005-06:00

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!

Great Strides 2009

2009-02-19T10:32:00.004-06:00

Make video montages at www.OneTrueMedia.com

What a sweetie!

2009-02-16T09:57:00.003-06:00

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 :)

100 Posts

2009-02-13T10:10:00.003-06:00

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

2009-02-12T07:37:00.011-06:00

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!

Wordless Wednesday- Cake Time!

2009-02-11T09:42:00.005-06:00

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!

17 Weeks Belly Pic

2009-02-10T10:44:00.003-06:00

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 :)

Breakthrough!

2009-02-09T13:12:00.002-06:00

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.

Neat song

2009-01-29T15:49:00.001-06:00

I stole this from another CF Mom's blog. I thought that the words tell something that I feel just never know how to put into words. It's funny how whenever the hard times in life hit that you really do find out who your friends are.

You know you have been dealing with CF too long when...

2009-01-29T15:45:00.002-06:00

I stole this from another CF mommy who blogs and thought that it is so true :)

Hope that you enjoy!

You Know You've Been Dealing With CF Too Long When ....

- You've used puppets, toys, sung, danced, pleaded and generally made a fool out of yourself all in an effort to get your child to eat.

- You've stockpiled enough applesauce to start your own factory

- You find loose enzyme beads literally everywhere, the car, your clothes, -the ceiling (not joking)

- You count more calories than sheep

- You add salt to everything and use butter as a general cooking base even when a recipe doesn't call for it

- You panic when your child sneezes

- Your child coughs and you immediately chant "Xopenex four times a day!"

- You check websites daily for news about a cure

- Your house has more medications than the pharmacy

- You've actually found yourself explaining a medication to the pharmacist instead of the other way around

- You've considered dying all your child's clothes yellow to hide the vitamin stains

- Your medical bills are looking more and more like the national debt

-You've prayed for your child to be fat

-You have a strong urge to smack whiny parents of "normal" kids

-You've actually found yourself exclaiming angrily in the grocery store upon discovering extra-cheesy mac doesn't have more calories than regular (sadly true)

-You know what the poopie dance is, and you've done it

-You've had long involved discussions with other parents about poop

-You've started referring to everything in acronyms (CPT, PA, MRSA...)

-You're seriously considering a medical degree, cause at this point you know more than most doctors

-You've reduced a complete stranger to tears by yelling at them not to touch the baby

-You can describe the hospital's daily menu in exact detail

-Purel and Lysol are your new best friends

-You've considered life-long quarantine for your child

-You've told someone off for coughing near you or your child

-You have multiple doctors on speed dial

-You refer to CPT as your child's nightly beating

-The pediatrician sees you more often than their own staff

-You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis

-You've cried over half a pound

-Your child comes with an instruction manual if you leave them with a sitter

-You've forgotten what normal is

-You find empty enzyme capsules in your pockets

-Your child wears a neb mask more easily than they do a hat

-Your child has started trying to do their own CPT

-You own every Baby Einstein video made and are eagerly awaiting more just for something different

-You've forgotten to put meds in the nebulizer and actually let it run several minutes before discovering the problem

-Your after clinic routine at home looks like a hazmat excercise

Bye-bye Picc!

2009-01-28T10:50:00.002-06:00

Today Luke's PICC is coming out. I am so happy because this means he can have a real bath. No more sponge baths for the Luke man! I am bored sitting here waiting for the nurse to come. She was supposed to be here around 9:30 but still hasn't shown. *sigh, I guess she'll come sometime today. Hopefully it won't be when I am in the middle of teaching piano, btw- I have quite a few new students.

This is what Luke thinks about getting his PICC out :)

15 Weeks

2009-01-27T12:14:00.002-06:00

So today I turned 15 weeks and I decided to post a belly pic. Believe me, it's not much. I am barely showing and I think that I just look like a fat lady with a pooch. I didn't have the cutest belly with Luke and I don't think that I am going to have a cute belly with this little one.

I think my belly is super pointy. It was like that with Luke too.

I still don't have the test results back yet but I will post as soon as I know about the CF results. This wait is killing me!

Awesome video

2009-01-26T21:38:00.002-06:00

I stumbled on this video at the blog phoenixsfight.blogspot.com. It is a great reminder as to why organ donation is so amazing.

Also, just reminding all the Illinoians that organ donations laws have changed and even though you registered awhile ago you may need to register again. Please think about giving some family the most amazing gift they could receive.

New layout

2009-01-24T23:48:00.002-06:00

What do you guys think of my new layout? Dan spent quite a bit of time putting it together and I really like how it turned out.

Anyways, have a great Sunday and even though I won't be in the service tomorrow because I am still contagious with the c.diff, I will be worshiping with you in my home.

Pictures

2009-01-24T17:37:00.003-06:00

I thought that I would post a few pictures from the other night. This was right after an antibiotic infusion and Luke was a little out of it. I really wish that I had a better camera though and I am hoping to get a better one in the next few months.

This one is my favorite one!

A Good and Bad Issue

2009-01-21T00:25:00.002-06:00

Today I realized something about Cystic Fibrosis that is a blessing and a curse. Luke looks totally normal.

I know that may sound odd that it would be a bad thing but here is the reason it is sorta irritating. People are nosy and they ask questions about things. Things like why my son would be wearing what looks like a cast. There are other things too, like being stared at when I am at a restaurant giving enzymes, or when I wipe down the shopping cart for 10 minutes to make sure that he gets no icky germs, and I even get them when I tell him "Good cough buddy, keep em coming". I feel like people judge some of the odd things we do, such as feeding him lots of chocolate and also loading his food with butter and salt. I have seen the looks that mothers have given me and I know what they are thinking, "That mother is KILLING her child"! What they don't realize is that I am helping him live longer.

That is why I feel it can be a curse. I feel I have to explain some of my parenting techniques and also why he is so small for a 17 month old. People just don't get it sometimes and it's only because they are uninformed.

However, all of this got me to thinking. How many times have I judged a mother because she is giving her baby a bottle and the child is old enough to find it himself. Or what about the time I judged a mother for allowing her child to eat off of other peoples plates. I have done these things myself now and I have a reason for both! I am not going to get into them now but I should have never judged people!

I encourage you to try and put yourself into others people shoes this week. When we see people we only see a still frame of their life. We have no clue what the circumstances of their life are. They may have a perfectly logical reason for what their child is doing.

So my challenge is this- He who has no sins, cast the first stone.

Put yourself in their shoes, you may see life differently.

Home!

2009-01-19T09:49:00.002-06:00

Yeah! We are home today. I feel like I have so much to do and we were only gone for six days this time. Luke is still a little symptomatic but nothing horrible. The c.diff is still a little iffy but we are hoping that will be cleared up within the week. His poops are quite interesting. His coughs are getting interesting too! Very juicy, if you know what I mean.

We have put Luke onto a different iv schedule than what he was on in the hospital and it seems to work out okay. The only problem was that I went to bed at 9pm thinking that I would wake up for his midnight infusion and go back to bed but after it was done I couldn't fall asleep again! I think that from now on we are going to have to stay up until it is done. I may even push it up just a tad so that I can go to bed at midnight instead of 12:30 when it would be done.

We are having a problem with Walgreens though. It seems that they never have anything in stock and it's a pretty important antibiotic that they can't give us. I am starting to think that we need to change pharmacies.

I am off to clean my house and wash my clothes. I need to get everything done before noon so that I can take a nap this afternoon :) Growing a baby makes you sleepy.

Here's a pic of Lukie in the hospital. He was on sedation meds right here so is a little loopy :)

Home Sweet... Hospital?

2009-01-16T23:52:00.003-06:00

Tonight I am sitting in my kitchen and actually blogging. The house is not quite clean but is superly duperly quiet. When I walked in this evening I couldn't realize what was missing. Did Dan take something off the wall? Is the Christmas tree still there (unfortunately, yup)? Did something get stolen? I walked down the hallway and looked in the bedrooms and that is when I realized what was missing from our house. One little 17 month old toddler.

Tonight Dan is in the hospital with Luke were he is staying for a tune-up. He also contracted C.diff so that was causing him to be in quite a bit of pain. I took him for a normal appt on Tuesday but we decided to admit him instead of waiting for him to get uber sick. I kinda appreciate the dr doing that. My weak stomach couldn't take much more vomit from him.

This stay hasn't been too bad. I think the difference is that Luke can get down and play instead of having to stay in the crib the whole time. Walking makes all the difference! I am not saying that I enjoy this, I am just saying that it is not a nightmare like it normally is.

The first day he was in I cried. We had to wait in a little, tiny room for about 5 hours because the hospital was full and there were no beds. Luke screamed all 5 hours. Not fun. He was in so much pain from the c.diff tearing through his intestines that he wasn't happy being held. Also, they thought that he was going to have to be sedated that day so he wasn't allowed to eat or drink anything. He didn't like that!

We did get a room though and settled in for the night. He slept in my arms the first night and to say that I hated it would be a lie. Although I barely got any sleep it was precious to me. He has never liked snuggling so the fact that he snuggled with me the whole night brought tears to my eyes. I am only going to have a little boy for a short time. I want to enjoy that time with him.

He has now been in the hospital for 4 days and it looks like he is coming home on iv's on Sunday or Monday. Nice and short. I like these stays. I am just praying that he doesn't pull his PICC out. That is not cool and believe me, it's happened before.

One side note though, Luke was by a speech therapist as having Food Sensory Aversion. I don't have the energy to explain it but I promise to in the near future.

Yahoo!

2009-01-13T09:49:00.003-06:00

Did you check out my pregnancy ticker? I am officially 13 weeks today! I don't know why that is so exciting for me but it is.

I am off to the Dr's with Luke. We had a major snowstorm last night so I am hoping that doesn't make our trip too long. I am just praying for no traffic, however, I am leaving with plenty of time to spare :) I really dislike being late, it's not cool.

Dark Ages!

2009-01-12T20:38:00.002-06:00

I am so excited! After 3 days without a computer I have one again! Well, I technically had one but I didn't have a monitor so getting onto the said computer wouldn't exactly work. It's been nice to spend the last 20 minutes catching up on all that has happened on the world wide web. I didn't really miss much. However, I do have a clean house.

Tomorrow Luke has a clinic appt. I am not super excited because he has been acting sick lately and the dr said to pack a bag in case she wants to hospitalize him. She has said this before but this time I am sorta thinking he needs a short stay. He is throwing up, coughing, having mucousy poops and overall grouchy. I feel like he rarely is happy anymore. It's been a rough week or so. The antibiotics that the dr put him on don't seem to be doing anything so I am thinking he may need something different. We have been doing treatments 4 times a day but that also doesn't seem to be helping.

This is just one of the ups and downs of CF that we face all the time. One day Luke will seem fine and the next, he will be coughing and sick. I understand that it comes with the territory so I am resigned to the fact. I just need to be prepared for anything. Unfortunately, I am not the most flexible person. I am praying that I will gain flexibility this coming year and throughout my life. Having Luke has taught me so many things. Mainly, that we never know what the future holds even though in our heads we have it planned out so perfectly. I tend to freak out when Luke is sick and call my mom and sisters. I think that since I don't know perfectly what is going on that it scares me even more than the boogey man would.

BTW- I am still waiting for the test results from my CVS. I am hoping to have the preliminary results by the end of this week. We shall see....

Baby Allen #2

2009-01-06T21:45:00.004-06:00

I had my CVS today and everything seems to be okay. No spotting and the cramping has already stopped. I should have the results within the next few weeks. I have heard several different time frames so I am just going to try and relax and wait. Not the easiest thing for me but I can handle it.

The bad news is that I was sick yesterday and today Dan and Luke are sick. Luke just vomited all over his sheets and Dan is trying his best not to :( Both of them are in bed so I am using this time to catch up on some things that needed done.

Thursday I have another dr's appt but this will be a normal midwife appt. I am excited because it is my first 'real' appt.

Here's the little bean! He/she was very active during the whole thing today. I had never seen Luke that active in the womb. Hoping that doesn't mean I will have another crazy child, yikes!

My CVS

2009-01-05T18:34:00.002-06:00

Some people have asked me what the CVS is. I found this information and thought that I would pass it on. I will be having this tomorrow around 1:30 pm so be thinking about me. I am sorta nervous!

http://en.wikipedia.org/wiki/Chorionic_villus_sampling

Hope that you learn something :)

Happy New Year!

2008-12-31T22:16:00.002-06:00

Just popping in to say enjoy your New Year! I have been very busy so haven't had much time to post. Not to mention that I have been very sick with this pregnancy and I don't really feel up to writing. Hopefully that will be going away very soon!

I have my CVS on January 6th so hoepfully in a couple of weeks I will know if I am having a girl/boy and if this child has CF.

Take care!

2008-12-31T22:14:00.001-06:00

Top baby names for 2008 are here! http://ping.fm/69Jt8 Do you see your #baby name on here?

2008-12-31T11:01:00.001-06:00

Twitter Moms: The Influential Moms Network

Rickets?

2008-12-10T11:06:00.002-06:00

Yesterday Luke had a clinic visit and I was shocked to find out that the Doctors think Luke has Rickets. This slightly concerns me. I don't fully understand what it is and everything that goes along with it but I know that it is something that I am not ready for. I tend to not worry about stuff if the doctor doesn't worry but the doctor was acting strange yesterday. She seemed worried and she NEVER seems worried. She's a pretty cool doctor and usually just goes with the flow. She is very calm and laidback, rarely gets excited. She's a really neat doctor to have when you are like me and freak out over everything. She has helped learn to stay calm.

Anyways, the test results won't be back for several days so I am just going to have to wait until they come back. Until then I will be trying to fatten the little guy up. Unfortunately, Luke lost a few pounds since the last time he was there. Almost a whole kilo which is 2.2 lbs! That's not good when they have an amount that they want him to gain DAILY. I think that it has to do with walking and I hope that next clinic it will be fine again. If not, they mentioned thinking of some interventional ways to get some more calories into him. CMH is very aggressive when it comes to weight.

In other news, I saw the new baby last week on ultrasound and I will be seeing him again tomorrow. I am so excited. Hopefully I will have time to scan in the pictures. Right now he sorta just looks like a blob. However, a very cute blob :)

I have been sick the past week or so and I am finally starting to feel better. I know that it can come back at any time though so I am prepared. I have Zofran and it is awesome :)

Take Care!

Luke Visits Fusion92

2008-12-02T10:02:00.001-06:00

Dan wanted to do a screen test with Luke just to see how he would do when we put a camera in front of him. We had a lot more footage than what is on this video but Dan had to edit it really short because he is using it in something he is presenting this morning at work. Hope you like :) I think it's cute.

I have been tagged

2008-12-01T09:07:00.003-06:00

Alicia tagged me for a blog award! I probably don't deserve it since I have been having a hard time getting on here to write but I am quite proud of the fact :) Here is her blog and also the originating blog :)
Experiencing Each Moment

Love to Breathe

Alicia also has a CF'er and I think that it is great to be meeting new people through blogging who are also going through similar circumstances. I believe one CF mom put it best "It's great to be around people who's normal is the same as my normal". It's hard to really connect without a lot moms who are not CF moms. Maybe this is something that I need to work on but it is difficult to hear other moms complaining about colds and having to give ONE med every day. I know that there are moms out there that do not have a CF'er but go through the same rigorous medical treatments and other things every day. In fact I know that compared to some people we have absolutely nothing to complain about. I think that I don't just get annoyed because we have to do so much and mothers of healthy kids don't understand I think that it is more because I see the other moms. The ones that have severely handicapped children that will never be independent. I feel for those moms and I know that I am so blessed with Luke. I am sure that they also feel blessed though because I have yet to meet one of those mothers that didn't appreciate every day with their child and love their child unconditionally. Whenever I run into a mother of a sick child at Children's Memorial I walk away feeling blessed by them. I want to be more like them.

Anyways, I should probably stop writing. Luke starts up TOBI again today so that always makes my day a little crazier. I think that he may need it though because whenever his PA is getting a little crazy his breath gets this odd smell which he has again. I hope that you all enjoy getting ready for Christmas!

Political Correctness or Racism?

2008-11-25T22:31:00.003-06:00

I am not one to get all riled up over something simple but when it affects my family I will have a righteous anger. I know that Cystic Fibrosis awareness is not what it should be (I hope to try and change that) but the ignorance that college is showing is absolutely ridiculous. I know that people fund sickle cell research which some people could say is an African American disease (I know this is not necessarily true because I had a great aunt with it) however I see nobody excluding it from fundraising campaigns.

I am not trying to turn this into a race matter but it appears that these students already have. Please read and spread awareness about CF. We need all the proper education out there so that this NEVER happens again.

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home

A Big Brother?

2008-11-24T11:33:00.003-06:00

So we have some exciting news! Lukie is going to be a big brother! I found out several weeks ago and we are starting to spread the news now. We are very excited and I can't believe that I am pregnant. I was a little shocked when it happened. Only because I always think I am pregnant and never am :)

I am hoping to get the CVS testing done in several weeks to find out if this baby also has Cystic Fibrosis. I am prepared for whatever the Lord has planned for us and I am resigned to the fact that we may have 2 little guys with CF. I do want to know as early as possible though so that I can prepare mentally and also not have to be so worried about it.

I have been a little sick but not too bad. It's worse than when I was pregnant with Luke but I consider myself lucky that it isn't as bad as most womens morning sickness.

I am due sometime around July 21st. I will know more after Dec 5th when I have my first u/s.

Here is a picture of Luke announcing my pregnancy to his daddy.
PS- I used a clorox wipe on the test before I gave it to him ;)

Yay!

2008-11-12T09:31:00.003-06:00

I have forgotten to mention that Luke had his Infant PFT several weeks ago and the results were beautiful! It's always interesting trying to get ready for those because they are so early in the morning and I have to fight morning traffic with a crying baby in the backseat because he wants to eat. However, I can't make the crying baby stop because I am not allowed to give him food for sedation reasons and he is sleep deprived anyways so I couldn't make him happy anyways.

So after I finally got there with my screaming child, I realized that we were a half hour early. I could promise you that the last time we had one I had to be there that early! Thankfully though, Luke's tests came out above normal and his lung function is not a problem at this time. We also found out that the albuterol that we have been giving him for months is not really doing anything so we were able to cut it out. I only have one tiny breathing treatment to give Luke every day! I still do 2 airway clearances but 1 breathing treatment frees up so much time in my day. I think that Luke likes it better too because he doesn't fight as hard during his Chest PT.

With all that free time you would think that I would be blogging like crazy right? Well actually I have been fighting this ear infection and blogging was the last thing on my mind. Luke has been sorta left to himself a lot as I just sit in front of the tv trying to hear what is happening. I miss those days before I was married when I actually COULD sleep all day. I think that I took those for granted *sigh.

I want to share a couple of pictures showing Luke doing what he does best. Snacking! Oh and riding on his little car thing. He likes his little car thing and will sit there for hours :) It's really cute.

Voting!

2008-11-04T15:11:00.004-06:00

Here are a few pictures of Luke after we went and voted today. I think he liked all of the old people at the polling place :)

This is what Luke will do if Obama wins.

Tomorrow is the Day!

2008-11-03T17:40:00.002-06:00

So I am pretty much sick of all the election talk but I figure that I am going to write a quick post about it.

I plan on voting tomorrow morning and even though I know that my vote is pretty much useless in Illinois (oh the joys of the electoral system) I feel that I need to make my voice heard. While I do plan on voting McCain I must say that it has been a topic of discussion with my dear husband. While I would never ever vote for Obama and neither would Dan we have discussed whether or not we should vote 3rd party which is what my conscience tells me to do. Especially because we live in Illinois and Popular vote really does nothing and this is suuuuch a Democratic state and so my vote really will just be put into the popular factor. I have decided to vote McCain. For no other reason than I don't feel like writing someone in. Dan has decided to go 3rd party and I guess I don't care. He can do whatever he feels like as long as he is happy :)

That's all I am going to say about my voting issues. I don't really get into politics as much as I used to but this election has turned me off even more to Washington. I really don't see them as caring about the average American. It will be interesting to see what will happen.

I will leave you with an example of what happens when you leave little boys in the living room while you blog. Yes, that is chocolate all over his cute little face :)

Bactrim

2008-10-30T12:38:00.002-05:00

I am sorta irritated right now. Luke's nurse was supposed to call in Bactrim yesterday but nothing has happened. AAAAHHH does she not realize that I have been calling Walgreens and checking on this prescription for 2 days now? It may only seem to be one little prescription but my mind keeps thinking that it may help keep him out of the hospital. Oh well, I guess it will all work out.

Dan and I had a great time last night meeting a young man with CF. He's 20 and goes to DePaul University so he was able to walk right over to the hospital and meet with some of the parents who have children recently dx with CF. It made me feel better to see a nice looking, well adjusted, kid who has CF. Sometimes I fear that Luke will be odd or have some weird issues because of this. I will say that one of the things he impressed upon us was that it was his parents that helped him have the correct outlook on life. That is a huge task that Dan and I feel we have to start doing even now.

Anyways, this was rather an odd post but I guess I just had to get some things out of my system :) I must now go face the Ravioli covered bundle of energy who is my son.

Finally stopping by!

2008-10-27T12:19:00.003-05:00

It has definitely been awhile since I have blogged :) I decided to take a crack at it this morning. We have been super busy with Luke having some more health issues and me going to Spain. I hope that I can share some of the pictures with you soon.

The big news is that Luke started walking! Not consistently but enough that I can say he is walking. It's very cute if you ask me :)

The past month or so has been a character building experience for me. I was worried when Dan lost is job but now the Lord has blessed him with an even better job than the one that he lost. I can't even explain to you how awesome the Lord provided for us when Dan was laid off. We didn't get too far behind in our bills and we didn't get evicted. I guess that I was very scared about that. God is good though and He lovingly brought us through all of this.

Luke did have a PFT last week and that went very well. We found out that he doesn't need Albuterol with every treatment and so that minimizes how long a day I spend sitting with him on my lap.

Here are some pictures for you!

This is the area that I went to in Spain. This is high above the valley where we distributed literature and worked on the farmhouse that the missionaries own and use for various things. It was such an amazing trip!

Me and my sister :)

Here are some of the fall pictures that we took. I hope to upload more to photobucket soon.

Moving

2008-09-05T14:44:00.000-05:00

Yep, we're moving today! After a year of living in another family's basement it feels really good to be out on our own again. Well, good and scary :) I am sitting in the new apartment right now but we only have our computer set up and our tv. The Comcast guy came and set it all up for us so we are still in the 21st century.

Hopefully tonight people will come out to help us move and then we can get nice and settled... until Spain :)

Have a great weekend! I will be unpacking and enjoying every minute of it, well, sorta...

Oh What a Crazy Life We Lead!

2008-09-02T16:02:00.002-05:00

It's been quite awhile since I posted on here. It seems like ages actually. So much has happened to us in these short few weeks.

Luke turned one! It was very sad and happy for me. I guess I was sad because he is not my little itty bitty baby anymore and I loved having a little baby. Now he has 4 teeth and is walking along furniture!

I finished my jury duty. Yippie! It ended up lasting four almost five weeks. It was very interesting and I did learn a lot but I think that next time I will try even harder to get out of it. Especially if I hear that it is going to be this long again. I really do feel good about doing my Civic duty though :)

Luke has been doing well healthwise. He is eating like a growing boy and has been able to stay out of the hospital for 3 months now! That is the longest that he is gone in between hospital stays almost his whole life. His first hospitalization after birth was when he was 4 months old and it has been 3 months since his last stay in May. I believe that it was the day before Mothers Day the last time that he was released. He has almost constantly been on anitbiotics though but that is fine with me. He is getting over c.diff right now though. Two Sundays ago we were getting ready for evening church and when I was changing his diaper right before we left I noticed that there was blood in his diaper. Not a little, a lot. I can honestly say that freaked me out almost more than anything else I have ever seen! I believe that he is now over that and we are just waiting for his Infant PFT. His doctor wants a new one because she thinks something isn't quite right yet. He sounds clear so I don't know what exactly they are looking for but I am sure she wouldn't order one just because.

The biggest thing that has happened to us is that Dan lost his job on Friday. It was not really a huge shock to us because his boss has not been to happy with him lately. It's not performance based it more that his boss is an unsaved man and I think that he doesn't like it that Dan doesn't go out drinking with him and laugh at all his dirty, crude jokes. I can already see that God is sustaining us and I know that He will continue to sustain us. We are able to get unemployment and Dan is doing a few freelance jobs. We are praying that he is able to get a job before I leave for Spain. That would be awesome.

This is a little that has been going on with us. I hope that I can update with some pictures soon but right now I am running out the door to go babysit. Have a great day!

Where I Have Been

2008-07-26T11:15:00.002-05:00

I have been very absent from blogging lately but it is all for a reason. Everything has gone topsy-turvy here in our household and I feel that I barely have time to check my email anymore.

I have been involved with the musical "State Fair" and that has been taking a lot of my time. At first it wasn't that bad and I only had a few rehearsals a week and then I got a tad bit crazier when we opened and were there almost every night. Even though it got busier I could still handle everything at home.

My life got crazy when I got summoned to be a juror. I figured I wouldn't be picked considering my age but I figured wrong. I was the last one picked but I was picked. This trial is supposed to last for another few weeks and I am panicking trying to find places that Luke can stay. I am so thankful to have the family that I have because they have all stepped up to help with Luke.

I understand that it is hard to leave a child but I feel it is even harder for me than most parents because I am afraid that because I am not taking care of Luke that he is going to get sick again. It's probably unfounded because I know that my mom and sisters do just as good as a job as me but I think that I know his sick signs better. Every day that I am away from him it hurts just a little more on the inside.

I know that jury duty is something that is my Civic duty and I know that it is perfectly acceptable to leave Luke for something that I can't get out of. However, I feel disgusted with myself as a mother because I feel that Luke doesn't have his mother. I feel that I am abandoning him. It's this strange feeling and it makes me want to vomit when I think about how much he will be in the care of other people for the next few weeks. I believe that God is Sovereign and that this is all here because He ordained it yet I almost feel like this is more than I can handle.

I have moments of perfect sanity and then I have moments of complete lunacy. I feel as if I am going insane but then there are moments when I relax and allow God to move in me that I feel as if I could take on the world. I don't know why I am so mixed up right now. Everything seems skewed to me even everyday things that I have dealt with many times before seem to be changed and twisted and more difficult.

I am exhausted, nauseated most of the time, getting over a cold, sore from walking, and have blisters on my feet. I am not saying this to complain I am just showing what jury duty does to a person! I don't even think I was this mentally and physically drained after I had Luke. I never feel rejuvenated anymore.

I am praying that this week goes better seeing how I am almost done with my cold. I think that the cold really hurt me last week. Anyways, I am off to go wash dishes and clothes. I am waaaay behind and need to get Luke some clean clothes and bottles because I am having to ship him off Sunday night again.

Oh boy, here come the tears again.....

Busy, busy, busy

2008-07-14T11:56:00.000-05:00

Sorry I haven't posted in awhile. I am sooo busy with the musical that I am playing my violin in. Luke is sick right now but it's only because his culture is showing that he is growing e.coli. I hope that it is gone this visit! He has been coughing a little more so I hope that the doctor won't admit us today.

I hope to post pics later but right now I am off to call the dr to see if I can come in earlier with Luke because I have to drop him off at a friends house so she can watch him because I have to then go to Itasca so I can play in a rehearsal. I seriously have every minute planned out today!

Have a great day!

Going on a Trip and other going ons

2008-06-26T09:15:00.002-05:00

Tonight we all leave for Pittsburgh! I am pretty excited because I have never been to Pittsburgh (although I have been to various other parts of PA) and we haven't taken a trip in so long.

I used to wonder why my mom got so excited about trips but now I think I understand. IT can be very fun planning a trip and I think that I may enjoy this trip a lot more than I would have if I was little. I think that it will me interesting brining Luke with and trying to get all of his meds packed up and ready to go. I really hope that I don't forget anything.

I should be a pretty good trip considering I am hopped on Vicodin. I have been having back pains for the last couple of weeks and then 2 nights ago it got extremely worse. I went to the er but they couldn't really find anything so yesterday I went to the dr and he thinks that I have a lodged kidney stone. Ewww! Let me tell you, this is very uncomfortable. I sorta wish that I could just curl up in a call and cry. Oh wait, I have already done that several times....

Yesterday the dr prescribed Vicodin and it is very nice. When I am on it I can barely feel anything and it almost makes me feel normal. Well, I would feel normal but I am sorta loopy and people just stare at me and laugh. According to Dan I am quite entertaining :) Glad that I can be funny sometime even if it is when I am on drugs.

This trip should go okay though because I am going to be so spacey that I am just going to go with the flow. I think that Dan thinks he can get away with anything this trip. Actually he probably could. The only problem is that I can't drive and we were going to split the driving time tonight. Oh well, I get to sleep more ;)

Just for an update with Luke- He had a rash on his legs but it seems to be getting better. I went to 2 doctors (I didn't like the dx from the first one, it didn't seem right) and we have come to the conclusion that it is either a diaper rash that has spread of vitamin deficiency. I haven't received a call from the Urgent Care dr telling my if it was a vitamin deficiency so I am thinking that it is a diaper rash gone haywire.

So hopefully I will be to post a lot of pictures on Tuesday and not be writhing in pain too hurting to type.

Asta La Vista!

Just Because

2008-06-22T22:54:00.002-05:00

So I totally stole this from my sister but I felt like doing it. Enjoy!

I am…a Christian, married to an amazing man, mom to one of the cutest babies ever, and slightly quirky
I want…to live my life God-honoring, to be the best possible mom and wife I can be
I wish... Cystic Fibrosis didn't exist and that all sinners should come to repentance
I hate...Cystic Fibrosis (do you see a trend?), hypocrites, and sin
I miss…my dad and my grandpa and also the innocence of childhood.
I fear…worms-seriously, and also that I fear losing loved ones.
I feel…sleepy
I hear…the dehumidifier running
I smell…popcorn
I crave…chalupas and anything spicy and cheesy
I search…the internet for pictures of rashes (what? Luke has one and I am worried) and also the Scriptures
I wonder…if I will have more children
I regret…the times I have failed my Savior and the stupid, stupid way I spent money in the beginning of my marriage.
I love…quickly, passionately and loyally
I care…about my husband and son and living for my Father
I ache…in ym kidney area and also that I fall so much in my daily walk
I always...clean out my ears. I know, it's odd but I must do it every day.
I believe…in God, in life, in love
I dance…whenever I can
I sing...in the car, in the shower, and very loudly.
I cry…when I am frustrated, hurt, or pmsing
I don’t always... brush my teeth before bed, take a shower every day
I fight… Drama and self-centeredness
I write…on my blog
I never… drink diet pop
I listen… to my child cry every night-he just doesn't understand that he is supposed to sleep in bed
I need…to go to bed
I am happy... God chose to save a sinner such as I and that I have open communication with Him and also that He has given me this life with these people and circumstances.

So there is a little insight into my head. I am sorry to share it all but I guess that I have scared you all now.

Oh, and please pray for Luke because I have to take him to the doctor's tomorrow for his rash that he is getting. I don't think that it is CF related but you never know.

Night!

Luke's Meds

2008-06-19T21:29:00.003-05:00

So several people have asked what we do for Luke when he is getting sick and also what his normal meds are.

I will list them here and then show a video and some pictures.

Acid Reflux Meds (he doesn't have huge issues with reflux but the reflux meds help the enzymes to work)
-Reglan 4x a day
-Prevacid 1 x a day

Inhaled Meds (these are administered with a nebulizer)
-Albuterol 2x a day (or Xoponex which is sorta the same as albuterol but doesn't have the side effects) this is actually used for a lot of asthmatics
-Pulmozyme 1x a day (dornase) From what the dr's tell me this is one of the drugs responsible for the better quality of life many cfers have.

Antibiotics he is usually on.
-Bactrim 2x a day (seems to work really well with him)
-Cipro 2x a day

He also gets airway clearance for 10-20 minutes 2x a day. He gets it right after his neb treatments. If he is sick then he gets his albuterol 4x a day and his pulmozyme 2x day. We increase his airway clearance to 4 15 minute sessions when he is getting sick. From the time I hear the first cough I start to up his treatments. I think that is working best.

He is always on enzymes. Right now he is on Creon 5 but as he gets older it can be Creon 10 or 20. He gets 4 before every bottle and every meal. We have to break open the capsules and then put them in applesauce so he can take them. He is the Creon King and can take them like a champ. Don't forget to have his food right on hand before you give them to him though. He knows that food comes after the enzymes and throw a royal fit if he doesn't get food right away.

Here is a video of him getting chest PT. I had just learned how so I don't think that I am doing it quite right. I do it harder now. And yes, he screams like that almost every time (if he isn't already asleep).

Here is a picture of the little guy getting his breathing treatment. Sorry it's so dark.

Lastly here is a picture of most of his meds. This is from when he was on iv meds so it doesn't show his oral anitbiotics. Also, he was on thickener at the time this was taken but he isn't on that now.

Long Lost Videos

2008-06-19T10:00:00.001-05:00

I found a bunch if videos on our camera that I have forgotten I had. Some of them are pretty funny with Luke too. I am hoping to get them all uploaded before the end of the day and put one or two of them up.

Luke is doing a lot better today. It sounds like his cough is getting better because it went from a wet, productive cough to a dry, hacking cough. He usually gets the dry, hacking cough because of reflux not a lung infection. He has still been a little grouchy but I think that it might just be a stage.

Here's one of the videos.

Wordless Wednesday

2008-06-18T09:02:00.002-05:00

Weight gain.

1 Month ago and 1 week ago. It's a huge weight difference.

Pictures From the Walk

2008-06-16T10:39:00.002-05:00

I said that I would post some pictures so I am going to post them now! I am shocked that I have the time to do it but Luke is sleeping and I picked up a little bit so I don't feel bad about it.

I really did have a great time at the walk and it was a huge success! The Naperville walk raised over $190,000 just short of the $200,000 goal. You can still help us reach that goal because you can donate until December 31st. Every dollar counts in funding research to find a cure.

I want to thank everyone who donated or walked in the event. It was such a blessing to see how many people stand behind Luke.

My niece Chloe

Some of the team eating after the walk.

Luke- he wore the lei to show that he had CF

My nephew Tommy and niece Chloe

The lighting is weird in the picture but this is all of my family that was there. I totally blanked and didn't get a picture of Dan's family. I think the only reason I got this one is because my sisters wanted it.

Four generations.

Luke and my mom

Me and my sisters

Luke and my cousins baby fell asleep during the walk.

2008-06-15T14:56:00.003-05:00

Luke's Great Strides walk went great. I had such a good time and so many people showed up for it.

I am hoping to post some pictures on Monday but I need to upload them and I don't have the time right now.

Oh, and we got a new car too :) A Honda Element. It's sweet.

One day at a Time

2008-06-13T15:35:00.000-05:00

So I found this video on Nathan Lawrenson's Blog and I found it very moving. It could have just moved me because this is what I have to face with Luke and even though it is a very scary reality I gives me hope.

Someday in the future Luke will need new lungs (if a cure isn't found) and seeing someone that has gone through it and is living a full life makes me have hope. I am having a day today where I would like to throw in the towel. I want to have a pity party and ask 'why me'. My sisters have perfectly normal children and lead perfectly normal lives. I am scared to even volunteer to play the piano at church because we may be in the hospital that day! You know it is bad when they take you off the nursery schedule at church because your life is too unpredictable.

I would love to say to my husband "let's have another baby" but I can't. I have to think "What will I do with the baby when Luke is in the hospital. Which baby will be neglected. What will I do if the next baby has CF. How can I handle 6 breathing treatments and 2 hours of Chest therapy every day more when they would be sick." I know that it is sinful but I am envious of mom's that only have to worry about buying formula, diapers, and clothes for their babies. Luke has hospital stays that run into the tens of thousands. I envy moms that only have to take their babies for well visits and then only take them to the dr if something is really wrong. We have to go to the dr's once sometimes twice a month and have to go to the er if he doesn't stop coughing or if he is running a temp over 101 degrees.

I feel like giving in. I can't believe that I am saying this but sometimes I want to run from it all. I feel like I should wake up and we will have a normal, healthy child. Some mornings I forget. Then I get thrown up on because he is coughing so much he vomits or then I am awakened with him screaming from pain because we need to up his enzyme dosage. There are times I wonder what it is like to sleep though the night. Are there mom's that don't know how to administer iv antibiotics? I thought that it came with the territory.

This may sound cruel but sometimes I envy cancer patient parents. They have hope. They know that someday it may be gone. Someday it will be in the past. Someday their child will be home. Their children may die though and for that I am truly sorry. My child will die young. There is no way to get around it.

I carried Luke for 9 months. I felt his first kicks and had huge dreams for him. I even thought about the day that I would have grandchildren. I didn't really enjoy my pregnancy as much as I wanted to. I took for granted that I would have more pregnancies. I took for granted that this child would be healthy and would grow up like all other children. I never expected hospital stays and iv's. I only saw the glamorous side of parenting.

Now I have seen the hard side. The side where you mourn what your child won't know- a normal childhood. They tell me that he can do everything everyone else is doing- that we can make it normal but it will never be normal. Even a 3 yr old knows that the other kids don't have to have enzymes or breathing treatment or BD. He will never know what I knew. Maybe he will know more than I knew though. Maybe Luke will understand things I never understood until I was an adult.

I guess that I started on this pity party because he is getting sick again. I know the cough. It's a juicy cough that shakes his whole body. I know the white discharge that comes out of his nose every time. I guess I will tell myself what I tell myself every time he starts getting sick "We can make it go away this time, I am sure of it". In 3 months he has been in the hospital 3 times.

I don't mean to sound bitter or resentful. I would never trade my son for 100 healthy boys. I love him and sometimes I get so happy and grateful that God gave him to me that I start crying. He is the most lovable baby and he is so beautiful. I feel so unworthy to be his mother. I wonder if there is another mother out there that doesn't doubt herself, that doesn't want to run away sometimes, that doesn't lie when everyone asks how she is doing.

I do know that God is Sovereign though. He gave Luke to Dan and I and he allowed him to have CF. I will get through this sickness like I have the other times- one day at a time. I will increase his BD and breathing treatments. I will wake up to do one at night. I will fight him to take all his meds on time. I will love him. I will cherish him. I will soothe him. I will be his mother.

I have a charge and that is to take care of him. Although life hasn't happened how I pictured it on my wedding day, it has been awesome so far. God had a better plan for me and I am learning that it can be magnificent. So even though sometimes I want to give up and sometimes I want to run away I never will. I love him too much and together we will fight CF. Together we will give Luke a 'normal' life. We will enjoy the good times with him, will celebrate with him, will cry with him, will mourn with him, and will grow with him.

Isn't that what life is all about? Growing? Because I am growing. One hospitalization at a time. Don't pity me. Even if I do complain sometimes, it's more like a vent against my selfish self. I know that I am selfish and know that I tend to be self-centered. God is using Luke to break me of that..... One day at a time.

Not again!

2008-06-13T13:15:00.000-05:00

Today I am asking for everyone's prayers because Luke is starting to get sick again. I am really praying that it is just a cold and not anything more serious. A cold can land us in the hospital though so I am guess I am praying for a very mild cold that we can get rid of at home.

At his PFT on Monday they told me he was recovering or about to become sick and I think it was the about to become sick that they saw. He has been coughing for a couple of days now and is acting very cranky. He is getting this white discharge out of his nose that he gets every time that he is sick. I am sorta fed up with all of this and feel like crying at the moment. I was hoping that I would have an uneventful summer.

Anyways, I am going to increase his breathing treatments and his airway clearance and pray that helps. It seems like every time that he gets off this certain antibiotic (Bactrim) that he starts to get sick again. Now I understand why CF moms celebrate when their children are off of antibiotics for longer than a week. He is still ona antibiotic (Cipro) but I guess it must be an Cipro resistant strain.

For the people who don't know certain antibiotics are sensitive to certain strains of infections. Luke will be on several antibiotics some times because he has 2-3 strains of infection and they are all sensitive to different anti's. Whenever they culture his sputum (mucous in the throat) they check to see what anti's will work. Sometimes it is a generic infection and most anti's will get it, other times it is a more serious infection and he has to go on iv therapy.

I am praying for no hospital stay this time. We have the Great Strides walk tomorrow so I hope that he will be healthy enough to attend. I am pretty sure he will be because this is a really early sick cough.

I can't wait to live in a world with no more coughs. That will be Glory.

Update

2008-06-12T12:52:00.000-05:00

It's been quite awhile since I have sat down and blogged. I guess that I am busier than I thought I was!

Quite a bit has been going on with Luke and Dan and I so I have a little bit to update you all on. Luke had his very first infant pulmonary function test and it turned out beautifully. His lungs are functioning at 104% which is awesome. The average(non-cf) child has 100% so that means that Luke is doing better than most healthy babies his age. It's so wonderful to see how he is doing and to watch him grow every day.

Luke just got his 2 bottom teeth. I thought that they were never going to come in but they popped through last week. He looks so cute with them :) He is pulling up a lot now too and I am having a hard time keeping him restrained. He likes stairs and other dangerous things.

Luke also had a clinic visit on Monday and that went amazing. He is at 64% for his length-weight ratio and that is right where they want him. The acceptable ratio is 50% but Luke is an overachiever. I remember the first appointment we had with Dr. Watts and she told us she wanted him at 50%. I felt so defeated because I thought that he would never get there. It's hard to believe that it only took us a few months when they warned us it could take a few years to reach 50%! I know that we have more trials we will have to face with his weight but it is nice to know that we are doing a good job now.

The Great Strides walk is this Saturday so I encourage everyone to sign up to walk or to donate, you can do that here. The CFF is an amazing organization and they are working so hard to find a cure. I feel so blessed that people are dedicating their lives to help find a cure or to help raise money to find a cure. Honestly, it humbles me when I realize how much people care. I have come to the realization that I should have donated time or money all those other times that people asked me to. I feel very selfish when I look at the past.

Well, I think that is all for now. I hear Luke trying to get into the bathroom so I should go get him before he starts drinking the water in the toilet :)

A Day at the Park

2008-05-28T13:28:00.000-05:00

This is going to be a picture overload post but I thought that I would let you all share in Luke's first trip to the park. He thought that it was great fun :)

One last picture from a few days before.

I was Tagged

2008-05-25T21:37:00.000-05:00

I know it has been awhile since I have posted but my sister, Sarah, tagged me and I decided that I should finally do one of her tags.

Here it be's!

1. The rules of the game get posted at the beginning.

2. Each player answers the questions about themselves.

3. At the end of the post, the player then tags five people and posts their names, then goes to their blogs and leaves them a comment, letting them know they’ve been tagged and asking them to read the player’s blog.

4. Let the person who tagged you know when you’ve posted your answer.

What were you doing five years ago?

1. School

2. Just getting my driver's license.

3. Playing in the Illinois Valley Youth Symphony Orchestra.

4. Practicing piano like a fiend.

5. Being an annoying, selfish, self-indulgent teenage girl.

What are five things on your to-do list for today (not in any particular order)?

1.Wake up
2. Excerise.

3. Do my devotions.

4. Take my shower and get ready.

5. Give Luke meds and make sure he is healthy.

What are five snacks you enjoy?

1.Chips and Dip

2. Pretzels.

3. Chocolate chip cookies. MmmmmMmmmm.....!

4. Kettle corn.

5. Chocolate frosting right out of the container.

What five things would you do if you were a billionaire?

1. A one year mission trip to a third world country
2. Fund the translating and distribution of Bibles into foreign languages.

3. Save money for Luke and his college and medical needs.

4. Have a CF free baby. Insurance doesn't cover it completely.

5. Give to medical research. Especially to ALS research and CF research. Two diseases I've seen the devastation of firsthand.

What are five of your bad habits?

1. Being a Nag

2. Procrastinating.

3. Chocolate

4. Being cluttered.

5.Biting my nails.

What are five jobs you’ve had?

1. Piano teacher

2. Video Clerk

3. Cracker Barrel clerk

4. Baby store clerk.

5.and the best job ever..... Mom

Oh, and here's a teaser pic of Luke. I plan on putting more up on Monday or Tuesday.

What is Motherhood

2008-05-02T09:46:00.000-05:00

5 Minutes for Mom is hosting a Mothers day Contest where you have to post a picture about what motherhood is for you. Here's the link to their awesome contest!

I had a tough time finding a picture of what motherhood means to me. When I think of being a mom I think of long nights, midnight feedings, and happy laughter. However, I am in a unique situation, to me motherhood also means- breathing treatments, enzymes, medicines, hospital stays, and regular doctor appointment. I wouldn't trade this job for any other. I love receiving smiles and giggles and I especially love spending time with my little guy. Nobody told me that parenting would be this hard but nobody told me that I would enjoy it so much and that each day is filled with more meaning because I have my little man to take care of.

Luke brings me so much joy so I am posting a picture where I am giving him a breathing treatment but also where he is smiling because his mommy is holding him. This is before the little guy started wearing a mask but now he does wear one when he gets his treatments. This picture makes motherhood worthwhile for me.

Luke Crawling!

2008-04-28T16:17:00.001-05:00

Luke just started this today! I am so proud of him. Please disregard my talking because I sound like a dork.

Also, sorry but it was with my camera phone so it is blurry.

Some Finds

2008-04-24T14:31:00.000-05:00

I found some cool stuff this week.

First I found these low fat fudge bars. YUMMY!

Then today I found these cute sunglasses that are 100% uv protection and strap so that Luke can't take them off. He wasn't too happy that I had stopped to take this picture.

Here's a random picture of Luke. He was busy playing when I snapped it.

He did It!

2008-04-21T16:37:00.000-05:00

Since Luke got his PIC line in a few weeks ago he has been constantly pulling on it and yanking it out of the bandage. Well this morning he finally had a victory! We try to make sure he doesn't mess with his PICC but since I was sleeping and he woke up without crying he had the perfect opportunity to unravel his bandage, pull on his PICC, and then successfully pull it out. I didn't know for certain if it was all the way out but whenever the nurse tried to draw blood from it it wouldn't drawback and then the fluids she was putting into just came back out onto me.

It is kinda frustrating because he only had 2 days of iv therapy left but it felt good whenever the doctor said that he didn't need to come in and they would just check it out tomorrow when he comes in for his CF checkup. I hope that this appointment goes well and I am pretty sure that it will. He hasn't been coughing that much (if you don't count his reflux cough) and he has been gaining some weight. The thing that I am concerned about is that he isn't eating very well. Today he has had only 10 ounces of formula, a yobaby, and a tub of bananas. Bananas and yogurt are 2 of his favorite things so I would have been super shocked had he not eaten them. I know that he will eat those so if all he is going to eat today is yogurt and bananas I guess I am going to go with it.

Here are some pictures of him that Dan's mom took Friday night when we went to their house.

Playing with his toys-

Getting into his toys-

Drool Baby!

Family picture, Dan isn't looking up in this one but I think that Luke looks cute :)

Random Pictures

2008-04-18T13:36:00.000-05:00

So I have nothing interesting to blog about so I thought that I would post some pictures of Luke that I took today. This was right after he tried tearing his PICC out. Talk about giving me a scare.

Talking to the light-

Laughing when I said Ribbit-

He just found his paci-

Trying to be stoic-

Crawling to MaMa-

Home IV's and Other Things

2008-04-14T12:52:00.000-05:00

So Luke seems to be doing great with his PICC line so far. I haven't made any major mistakes and his PICC isn't infected. His nurse comes by allot to take care of it and change the dressing but this is soooooo much better than staying in the hospital. We get to relax and be on our schedule and we also get to have privacy, something you don't get at all in the hospital.

Luke and I went to a ladies retreat this past weekend and it was great. It was so refreshing to be around other women that were there for the sole purpose of drawing closer to God. I haven't been able to go to church as much as I would like so getting the Word 3 times a day gave me a real spiritual jolt.

The speaker was great and every session hit home with me. One lesson was about having a quiet spirit while we are going through storms in our life. I struggle with this but I am learning to rejoice that I am going through the trials of life because these trials are making me stronger and more sensitive to God.

I bought some great books so I am super stoked get started on them.

On another note, I am very excited because Dan and I are starting to plan a trip to go see the Creation Museum next month. My mom wants to have a dry run taking care of Luke before September (my lil' sis and I will be going to Spain on a missions trip) and I thought that this would be perfect.

Actually, Dan and I need to get away. It's very hard to lose focus in our marriage with everything that is going on. I think that we need some time away to have fun together and not have to worry about when a certain medicine has to be administered or if Luke is feeling okay. My mom is so good with kids and she helps out with all the little grandkids allot. It is so nice for us to have her because she is one of the few people I trust to watch him. She is such a great example of what a mother and wife should be. I only hope that I can be half as great as her.

I will leave you with some pictures. Maybe tomorrow I will post some of Luke getting an infusion :)

Luke's PICC -not great quality because all are taken with my camera phone

Random pictures of Luke

This is the face he makes when he fake coughs.

looks like he has a lazy eye here!

We're Back Home

2008-04-10T11:55:00.000-05:00

I don't have much time but wanted everyone to know that we are back home and Luke seems to be doing well. He ended up culturing MRSA so he is on another 2 weeks of antibiotics. He may never get rid of it but we are trying!

Luke's infusions seem to be doing okay. I have done one all by myself and I must say that I was quite proud of the job I did. It's totally different when you are the one doing it.

I have to sign off though because the Home Nurse should be here soon and I am still in my pajamas!

Have a great day :)

It's late and I'm Bored

2008-04-07T22:41:00.000-05:00

So here are a few things that I have learned through my various hospital stays-

-Hospital food tastes rather bland and costs too much
-Yellow isolation gowns make me look fat
-There is nothing good on tv till 6:30pm (Wheel of Fortune baby)
-ER nurses need to get better with iv's
-Night nurses are cool (they let you get away with anything)
-Respiratory therapy is always late and there was always an emergency before your turn
-Babies scream when their iv blows
-My fingers get wrinkly when I wear gloves all day
-Residents don't really do any good, they always ask their Attending anyways who then decides to consult Pulmonology, it's much easier to bypass them all and go straight to you primary Pulmonoligist
-Student nurses don't know much
-The old ladies who teach the student nurses don't know much
-NEVER draw back on a PICC line (the blood clots, this I learned when the before mentioned student nurses did what there before mentioned teachers told them to and pulled back on Luke's PICC making us almost have to put a new line in)
-You need good wave patterns to get a good pulseox reading
-You need to lock BOTH locks in the parent showers (don't ask me how I know)
-The middle elevator going to 9West is going to breakdown one day and I am NOT going to be in it
-It takes about an hour to get a request to the nurse if you call her (she will never recieve the message because the slow person at the desk forgets to tell her)
-Isolation rooms rock
-Room partners always come at 1am, it creates a good bonding experience
-I look like death warmed over
-It's not a good idea to wait till you REALLY have to pee to go, there is usually someone in there by then and remember, you only have so many pairs of underwear

-Nurses rock
-Luke's doctors are the best
-This is the best place he could be

Most of these are silly things that I have really found out but seriously, the nurses and doctors here are great. They have done so much for Luke that is amazing.

Sorry for the ramblings!

Peace out.

Our Second Home

2008-04-07T12:10:00.000-05:00

So we had an interesting weekend which ended with us in the ER. Luke has a persistent cough that just won't go away with oral antibiotics so we are here at CMH so that his cough will go bye-bye.

He is on Tobrymiacin (sp?) and Zosyn some of the strongest antibiotics. We are hoping that he hasn't developed Psuedomonis and so we have to wait for the culture results. Luke is being a trooper though and flirting with all of the nurses. Thankfully he got his favorite nurse so all is good in Lukey land.

Here are some pictures of where we are.

His room

The view from his room -that's the Sears Tower and Hancock Building in the background!

Mr Peg Leg

Mommy and Baby- He's in isolation so I have to wear gloves and a gown. I am supposed to be wearing a mask but the Doctor said that I could slide this time. I couldn't imagine wearing a mask 24/7! Oh, and I look a little rough because there are no hair dryers here and even though I do my makeup it seems like it goes off really fast.

10 Years

2008-04-04T18:33:00.000-05:00

I thought that I would mention how it has been 10 years this Sunday since my father passed away due to ALS. It still hurts that he is gone but I rest in the fact that I am going to see him again.

I will always remember him and his unabashed way he witnessed to everyone he met. Nobody left my dad's presence without knowing how much he loved his family and his God.

These are a few things that have happened since he passed.

~I became a teenager
~I learned how to drive
~I graduated High School
~I became an adult
~I fell in love
~I got married
~I had a child

There are so many other things that I wish he could have been here for but I know that God is Sovereign and there is a reason. I try not to dwell on what he missed but on what he was there for like-

-my birth
-when i learned how to walk
-when i first talked
-my first day of school
-my salvation
-my baptism
-playing Saturday morning soccer (he was always faithfully there cheering me on)
-going on various family vacations to so many places in the US
-yelling from the car "RACE CAR DADDY!" who could forget that

I am just so happy that I had the time with him that I did.

I have a heritage I am proud of.

Thank you Mom and Dad. Dad, someday I will see you soon! I love you!

Dad and I right after I was born

When I was a few years old in Texas.

Lastly, a few months before he died- with me, Daniel, and Bethany.

Been Awhile

2008-04-04T14:43:00.000-05:00

So I know that I haven't posted in awhile but I am still here. Luke has not been feeling well lately and he has been keeping me quite busy. At first I thought that he was just teething but now a nasty cough has started up and he also has thrown up a few times. I think that the throw up is from the sputum because it is really gross and slimy and has this smell you never forget. He is now on antibiotics so hopefully we can knock this out fast.

My Great Strides campaign is going really well. I have raised half of my goal but I still need help getting to my goal. I would love it if I could have everyone I know give at least $5 to my team. I think that I would have the money in no time then! You can donate by clicking Luke's picture on the side and that will take you to my home page. I am so honored that people are giving money to help the Cystic Fibrosis Foundation.

Other than Luke being sick I have no real news. I guess my life is slowing done a little bit.

I hope that everyone enjoys their weekend!

Oil,oil, everywhere

2008-03-19T15:20:00.000-05:00

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.

Then and Now

2008-03-18T23:01:00.000-05:00

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.

Clinic visit

2008-03-13T11:54:00.000-05:00

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.

I knew I was unique and other ramblings

2008-03-07T13:57:00.000-06:00

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.

HowManyOfMe.com

There are
0
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!

We're Home!

2008-03-03T09:39:00.000-06:00

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 :)

Renaming Blog and Luke update

2008-02-18T10:50:00.000-06:00

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?

2008-02-15T12:21:00.001-06:00

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

2008-02-14T09:30:00.001-06:00

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.