Going on a Trip and other going ons

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

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

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

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

Weight gain.

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

Pictures From the Walk

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.

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

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!

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

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 :)