Where I Have Been

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

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

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.