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!
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!
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.
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!
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
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 ;)
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.
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.
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 :)
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.
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.
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...
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!
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.....
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!
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!
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!
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.
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.
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.
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.
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.
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 :)
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 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.
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 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.
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. 
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 :)
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-
