Randomness

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

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!!!

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 :)

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 :)

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....

..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

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!

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

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!

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!

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!

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!

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

Wordless Wednesday- Park Time!

Gotta love the swing :)

A Pirate?

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

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!!

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

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

Thank you.

Halfway There!

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

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!!!

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

... 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

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!

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

Make video montages at www.OneTrueMedia.com

What a sweetie!

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

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

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!

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

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!

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

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...

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!

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

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

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

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

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

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!

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?

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!

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!

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

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

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 :)