tag:blogger.com,1999:blog-69320557709540137192024-02-07T17:06:01.142-06:00Fighting Cystic Fibrosis One Day at a TimeCystic Fibrosis Blog about my son LukeCourtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-6932055770954013719.post-52030045048471899612010-05-20T16:27:00.003-05:002010-05-20T16:40:29.856-05:00Putting One foot in Front of the OtherWhen Luke is in the hospital and then the preceding week and a half or so after he is discharged I never feel quite in control of life. It's rather irritating but I have learned that I can just float along as the waves crash. Sometimes it's rough, like today, but I have learned that in my weakness, physically and spiritually, I can make it when I call on Christ for strength. <br /><br />Sometimes people say that I handle things well and that they admire my strength. I have yet to understand this. Maybe it is because I was raised by sacrificing parents but I don't see how I could NOT do what I am doing. Sure, there are days that I feel like giving up but one foot in front of the other and keep plodding along. The song from Finding Nemo often pops into my head on days when every time I pass my bed I long to crawl into it. <br /><br />Today is a tired day. That is why I have a hard time when Lukie is on IV's. I get almost no sleep. I am working on having grace even when I was up late at night and then awoken by my laughing, loud toddler at 6.30 am. I believe that I got 4 hours last night and they weren't even consecutive hours. This is totally normal for the weeks after a stay. The infusion schedule is such that trying to go to bed while infusions are running is just senseless. <br /><br />Today I feel weak. Today I am holding onto the hope that 'when I am weak, then am I made strong'. <br /><br />So today I will keep plodding along. I will keep watching the kids. I will make supper. I will maybe even run. Maybe today I will keep moving forward because there is no other way for me to go. And honestly, I am enjoying this because someday in the future, my children won't be here and I will have all the time in the world to sleep. Until then though.... 'just keep swimming, just keep swimming...'<br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a><br /><br />PS- We are walking in Great Strides on Saturday to raise money for a cure :) Please consider donating any amount to the CFF in Luke's Legions name. You can click on the Great Strides widget on the side to make a donation. Thank you. Everything helps us find a cure :)Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com10tag:blogger.com,1999:blog-6932055770954013719.post-83227264420801270552010-05-15T18:48:00.002-05:002010-05-15T18:52:18.573-05:00Change of plans!Today we were supposed to be doing family things and in a way we did. We took Lukie to the hospital together! <br /><br />Luke is going to be in a for a few days (hopefully only a few) to be cleaning out his system. He is not super sick, just has a cough that he can't seem to shake. Poor little guy :(<br /><br />He is all nice and settled in on his favorite floor with his favorite nurses. I think he actually enjoys being in the hospital because of all the attention that he receives. <br /><br />Tonight he is spending the night with Daddy and me and Ana are going to have a girls night here at home. I can't believe how quiet my house can be without Luke! He sure is loud.<br /><br />Anyways, if anything big happens (which I am praying doesn't) I will try to keep my blog updated about. Have a great weekend!<br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com1tag:blogger.com,1999:blog-6932055770954013719.post-59249538000102957962010-05-12T11:06:00.002-05:002010-05-12T11:07:46.536-05:00Wordless Wednesday- Peace<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi654XBPf-7bGRR3L7Bw7rlqIp46HTxOVoZCvkZSXl2bQioDCR8X7nm4gMI9plL9RYedvSb8ETqwrFCB6pfW0Pze-GOTWaHr9_CNNsazYrCG0TO5_gDJPZbfRpBLo4jpMtxMIaJ__IFcBC-/s1600/ana-sleeping.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi654XBPf-7bGRR3L7Bw7rlqIp46HTxOVoZCvkZSXl2bQioDCR8X7nm4gMI9plL9RYedvSb8ETqwrFCB6pfW0Pze-GOTWaHr9_CNNsazYrCG0TO5_gDJPZbfRpBLo4jpMtxMIaJ__IFcBC-/s320/ana-sleeping.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5470415820269958258" /></a><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-49912661392860452752010-05-10T10:09:00.002-05:002010-05-10T10:27:56.638-05:00What My Children Have Taught MeLately I have been thinking a lot about areas of my life that need change. Some of these areas are pretty basic. I have allowed many things into my life that have caused bad roots to take hold of my heart. I am striving (by God's grace) to rid myself of them. <br /><br />Some of these things I have learned not from hearing amazing messages from the pulpit, although I assure you that God has brought some amazing teachers into my life, but I have learned these things from my children. I spend almost 24/7 with my children. I wake to the sound of Luke breaking eggs into the couch (long story) and before I go to bed I hook Luke up to his feeding tube. I am constantly around them and I love to observe them playing and interacting with each other. <br /><br />The first thing that I am learning from them is patience. I do not mean that they are teaching me patience though. What I mean is that I see in them the impatience in my own life. There will be times that I discipline Luke because he wants his food right this instant. Luke will throw a royal tantrum because he is getting the food he wants but not in the time frame that he wants it. I am working on it, just not fast enough for him. <br /><br />That is when I see myself in him. That is when I am ashamed. I also throw royal tantrums when I do not get my way fast enought. I act just like a 2 yr old who wants it his way or else. I am blessed with a longsuffering husband but I fear that over the years I have abused that facet of his personality. I have caused him much grief by figuratively throwing myself on the ground and then proceeding to kick and scream. Usually, he acquiesces. Not because he is a push over but because he is self sacrificing and a peacemaker. <br /><br />I am praying that God will help me overcome my lack of patience. Things don't always move in a timely manner and that is life. The world is NOT on my time table. I wish it were and that I didn't have to wait for my husband to come home from work, or didn't have to wait for and hour in the Dr's waiting room. Unfortunately, these are all normal occurrences. Life happens and God has given me the grace to deal with it. However, I usually try to handle it in my own strength and fall flat on my face. I am resting in the fact that even though I will still fail in the future, God can bring me through this vice in my life. <br /><br /><br /><br />Ecc 7:8 Better is the end of a thing than its beginning, and the patient in spirit is better than the proud in spirit.<br /><br />1Cr 13: Love is patient and kind; love does not envy or boast; it is not arrogant<br /><br /><br /><br /><br />Rom 8:24For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for?<br />Rom 8:25 But if we hope for that we see not, [then] do we with patience wait for [it].<br />Rom 8:26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.<br />Rom 8:27 And he that searcheth the hearts knoweth what [is] the mind of the Spirit, because he maketh intercession for the saints according to [the will of] God.<br />Rom 8:28 And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose<br /><br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-83583205242238460782010-05-06T11:35:00.003-05:002010-05-06T11:50:39.369-05:00Just trying to Survive... and to changeLately I feel like I am just barely keeping my head above water. That is why I have not posted in awhile :( <br /><br />I am finally caught up on laundry, my house in some semblance of cleanliness, and Luke is on his VEST. It is time to blog. <br /><br />Lately my life has been chaotic and tumultuous. There are things that have happened that I am not proud of but we have moved on and are now flowing into the ebb of our family life and the new schedule that we have.<br /><br />Why do we have a new schedule? Dan got a new job in the City. So that means that he has quite the commute. He isn't home very much so almost all of the taking care of the kids falls on me. I am fine with this. A few months ago I may have balked at the idea and protested, thinking that it's my right to have a break. That I should be allowed some freedom. I don't really view motherhood like that anymore. I now view motherhood as my ministry. It is my job and I enjoy doing it. I am finding that the more I am thankful and appreciative of my children the less I freak out if things don't go according to plan.<br /><br />I still have my meltdowns and I still feel like giving up some days but God is giving me the grace to get through and I feel that I am finally realizing the power of grace in our lives. I am praying that my new appreciation and understanding of grace will help me to extend grace to others and to not get so worked up over the little things. <br /><br />Grace abounds in the chief of sinners and I can testify to this fact. I also know that since grace has been extended to me, it's now my turn to extend grace to others. I am now choosing to overlook others faults and sins and love them for who they can be and what God can do in their lives. Being judgmental and harsh is something that I am shunning. I am going to strive to show grace to others so that through my grace showing they will see a teeniest, tiniest example of grace that God extends to those that He calls. <br /><br /><br />I am hoping that over the next few months/years I will build a stronger base of my theological views. I used to think that knowing theology was prideful, that when people spewed off all of the -ism's that they were just showing off. I now know differently. Knowing what I believe is just as important as believing. I am not willing to be blind and ignorant anymore. <br /><br />I finally feel the freedom to become theologically sound without the fear that what I am doing is something that only men do. That is a lie and I feel it is a reason that there are so many weak and fickle women in the Christian realm. I am NOT choosing to be taken with every wind and doctrine. Instead I am choosing to become knowledgeable so that I can then teach these truths to my most important undertaking. My children. <br /><br />This may be disjointed and it may be weak but I will never claim to be a writer. I am just a woman (although I feel like a girl) that is trying to experience a deeper, more meaningful walk with her Savior. <br /><br /><br /><br /><br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com1tag:blogger.com,1999:blog-6932055770954013719.post-79228912284735028812010-01-14T13:34:00.009-06:002010-01-14T13:38:47.900-06:00Just BecauseI decided to upload a few new pictures just because it's been awhile. <br /><br />Here's Ana thinking that she has a strange Mommy :)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqPEPVpWn7D6Ex4hNDhCGSiFmjWNkC534qIjSKWzwM4S6qEbimN_ijwKsQwe6ncFY-teq_kaClGiw4MIWD6DN47GSfjSkWBTkmB80IoJj3yQHW5KUwnI3v8YIDayzR_6ebJJbTMDlg7Vd3/s1600-h/ana1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqPEPVpWn7D6Ex4hNDhCGSiFmjWNkC534qIjSKWzwM4S6qEbimN_ijwKsQwe6ncFY-teq_kaClGiw4MIWD6DN47GSfjSkWBTkmB80IoJj3yQHW5KUwnI3v8YIDayzR_6ebJJbTMDlg7Vd3/s320/ana1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5426681545161960434" /></a><br /><br />Luke playing at his appointment on Tuesday and yes, I cleaned the entire thing with a disinfectant wipe before I let him touch it :)<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMYG2pua-N7Iw5FMZVODJieJotHyrAwr02zJLXkeBFT828k0PaM1PHuvD6s_bAwW1zFRBJ_-CCScQ-bk0KTEyFxC-GVh9ksvz4E4xLz_ZX5CMdA23RioHj4y6bbiHwZXF1JfA9HVEOSVz/s1600-h/luke1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMYG2pua-N7Iw5FMZVODJieJotHyrAwr02zJLXkeBFT828k0PaM1PHuvD6s_bAwW1zFRBJ_-CCScQ-bk0KTEyFxC-GVh9ksvz4E4xLz_ZX5CMdA23RioHj4y6bbiHwZXF1JfA9HVEOSVz/s320/luke1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5426681889365749986" /></a><br /><br />We have been dealing with icky noses lately and this is just one of the many times that I needed to wipe Luke Man's nose.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATHPA7CH8PTJoTkAiXJjQbx9Htzu6kiAtGDMANSTiSNyGJLIXT0NZ47xVwtVRRAVJwKd1kxLjBAH91UNfXexKjJ685ghMi9loi8EK-9ZAyRB1qH0bRV1YBL408Bh3-Yh1Q3b60RuuqOoo/s1600-h/luke2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATHPA7CH8PTJoTkAiXJjQbx9Htzu6kiAtGDMANSTiSNyGJLIXT0NZ47xVwtVRRAVJwKd1kxLjBAH91UNfXexKjJ685ghMi9loi8EK-9ZAyRB1qH0bRV1YBL408Bh3-Yh1Q3b60RuuqOoo/s320/luke2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5426682091343317794" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com5tag:blogger.com,1999:blog-6932055770954013719.post-14502735700004181452010-01-12T15:27:00.002-06:002010-01-12T15:30:37.794-06:00Frustrating ClinicSo this might turn into a mini rant so if you read this whole post I am quite impressed.<br /><br />Today was a baaaad clinic visit. Medically, mentally, and physically (well, for Luke anyways). We have been keeping a close eye on Luke's weight and I know that I have mentioned it before on here. I have been feeding him super high fat and calorie foods, giving him 3 scandishakes a day, and always giving him milk before naps, bed, and with dinner. However, I knew his weight was not changing. I had set him up a profile on Wii Fit and have been keeping track of his weight. He still can't seem to pull past 25 lbs. <br /><br />I was hoping that the same thing would happen at clinic that has happened before. They tell me to keep giving him high cal/protein/ fat foods and scandishakes. They didn't do that. Eileen came in very serious. I hate when people are serious. She is very concerned that Luke has some underlying issue that is going on that she can't put her finger on. <br /><br />They think he might have diabetes or Celiacs. I know that Celiacs is treatable and that if kept on a the right diet totally manageable. It's just frustrating to think that Luke has to deal with CF and a digestive issue. Besides,(most) gluten free foods taste nasty and I feel for the child! I did gluten free diet for awhile and it was not yummy!<br /><br />I have a feeling that he doesn't have it though. Which wouldn't exactly be a good thing. <br /><br />If all the blood tests they did today come back negative Luke is more than likely getting a g-tube placed. I don't know how I am going to manage that. Remember, Luke pulls PICC's out. I have no idea how he will handle a g-tube. Not to mention he is in a big boy bed and all I can imagine is him getting up in the middle of the night and being attached and pulling it out. <br /><br />Luke has had a total reversal it seems. In the beginning he gained like a champ but he had serious lung issues. Now it's changed and Luke's lungs are extremely clear but he hasn't gained weight in a year. <br /><br />He looks and acts sooo normal. He's happy and loooves to eat. The kid can plow through a McDonalds Happy Meal quicker than I can eat a Big Mac and that's pretty fast!! <br /><br />I am a control freak. Pure and simple. I know it. Dan knows it. Most people who meet me know it. I am having issues dealing with the fact that I can't control Luke's weight gain. <br /><br />I see other CF kids seeming to do fine. No g-tubes, no ports, no extra 'underlying' problems. I feel like Luke got a raw deal. <br /><br />What kills me is that I can't help him. I have tried and I failed. I feel like the biggest failure ever. I can't even make me son gain weight. I pump about 2500 calories into Luke every day. 1800 of those are from Scandishakes. It's impossible for me to give him any more calories. I make the fattiest meals, I give him the fattiest drinks. Nothing works. <br /><br />I don't know. Maybe none of this makes sense. Maybe I am not getting my thoughts across. I never have been linguistically gifted. <br /><br />I am just overwhelmed right now. <br /><br />This could all be getting to me because I have a cold and am exhausted. I think that I have been pushing myself too hard but unless I do something, it never gets done. Dan tries to help but he has work responsibilities and we REALLY need every paycheck so I don't want him to compromise his job in any way. <br /><br />It's stinks because even if all the tests come back negative I know that he will probably still have to undergo surgery and deal with all the crap that a g-tube brings. <br /><br />I don't even know what to think. What do I hope for?? Celiacs?? Diabetes?? G-tube?? None of them sound good. <br /><br />I just wish it could all go away. <br /><br />Seriously, we need a stinkin cure. Like now. <br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com3tag:blogger.com,1999:blog-6932055770954013719.post-30630866669993832112009-12-19T23:28:00.002-06:002009-12-19T23:34:57.281-06:00RandomnessNot much going on over here and that is quite a good thing for us!<br /><br />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. <br /><br />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!<br /><br />Anywho. Will check back in soon! Well, maybe as soon as Christmas is over :) <br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-53833730919976773652009-11-30T16:17:00.003-06:002009-11-30T16:22:15.046-06:00BreatheI found this song/project and I am so amazed! It is so wonderful.<br /><br />Here is the trailer for it.<br /><object width="480" height="295"><param name="movie" value="http://www.youtube.com/v/vAa7eT_ZxBI&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/vAa7eT_ZxBI&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="295"></embed></object><br /><br />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<br /><br /><a href="http://www.cfvoice.com/info/breathe/index.jsp"></a><br /><br />Be prepared to cry. I know that my eyes didn't stay dry.<br /><br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-50908675645456252672009-11-28T21:51:00.002-06:002009-11-28T21:55:29.472-06:00Uh oh!!!So it looks like Luke is getting very sick :(<br />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. <br /><br />In other news we had a great Thanksgiving and really enjoyed seeing all of our relatives. <br /><br />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 :)<br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-69220885987965099242009-11-24T09:37:00.002-06:002009-11-24T09:42:30.313-06:00Happy Thanksgiving!<br /><br />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 :)<br /><br />~My God and Savior, where would I be without Him? <br />~My wonderful Husband, Dan is so understanding and compassionate<br />~My children, they bring me so much joy every day<br />~My mom and stepdad, I know that I bug my mom on the phone but she really is my rock<br />~My siblings, I was blessed with such an amazing family! <br />~Medical Advances<br />~Music<br /><br />These are just a few but there are oh so many more that I could write down. <br /><br />I hope to be back on sometime soon. <br />I really do want to keep up with my blog again :)<br /><br />Here's a little something to make your day a little bit better. <br />Every time I see this little girl she makes my heart melt just a little bit.<br /><a href="http://photobucket.com" target="_blank"><img src="http://i215.photobucket.com/albums/cc241/lukes-mommy/IMGP8657.jpg" border="0" alt="Photobucket"></a><br /><br /><br /><br /><br /><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com1tag:blogger.com,1999:blog-6932055770954013719.post-82529365084015862032009-11-21T21:50:00.005-06:002009-11-21T23:06:55.716-06:00A 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. <br /><br />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!<br /><br />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. <br /><br />Here are a few pictures that we recently had taken. I can't wait to receive the rest of them! <br /><br />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's<a href="http://ellephotography08.blogspot.com">her blog</a> <br /><br />I love them and she made our experience wonderful! We will definitely be using her again :)<br /><br /><a href="http://photobucket.com" target="_blank"><img src="http://i215.photobucket.com/albums/cc241/lukes-mommy/happyluke.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://photobucket.com" target="_blank"><img src="http://i215.photobucket.com/albums/cc241/lukes-mommy/4117001083_a0cacb2601.jpg" border="0" alt="Photobucket"></a><br /><a href="http://photobucket.com" target="_blank"><img src="http://i215.photobucket.com/albums/cc241/lukes-mommy/4117009559_8bc325425b.jpg" border="0" alt="Photobucket"></a><br /><a href="http://photobucket.com" target="_blank"><img src="http://i215.photobucket.com/albums/cc241/lukes-mommy/4117014205_208ffcc42c.jpg" border="0" alt="Photobucket"></a><br /><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/85771/lukesmommy/f28f3d7ce4b51e067c3048d72e741305.png" border="0" style="border: 0 !important; background: transparent;" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-23588434074964323632009-07-10T21:09:00.002-05:002009-07-10T21:16:09.620-05:00I should probably change my ticker......and blog more :) <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Here are a few pictures of little Ana. hope that you enjoy!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvfYH3cPVZtx2lMiLCyyDdTwv6uIMMlzTuhG99AewjYigF8t0xo0mpZGdAvTv8Ei0ZXHP3PcZB8af7sjSwnMAp3SO3hp3hR8uBT4VXV3kuSrTl-07LjFuo4ZLYZh1YT8RrEDkOzJPf0i1A/s1600-h/DSC07320.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvfYH3cPVZtx2lMiLCyyDdTwv6uIMMlzTuhG99AewjYigF8t0xo0mpZGdAvTv8Ei0ZXHP3PcZB8af7sjSwnMAp3SO3hp3hR8uBT4VXV3kuSrTl-07LjFuo4ZLYZh1YT8RrEDkOzJPf0i1A/s320/DSC07320.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5357020553595543778" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9JE_3-VgW23vexsoPCaq1N10ZCJuaYfzOBM0T8dOcXYDdI6Vu_m-U6K31GBbyQixDu4uKJ1IzTjnoxTc7IugktGfJGu7uzLIREO3bgb68zdo6KxygIAQXY2V_g1zkYME2BENvS89wBZkM/s1600-h/DSC07294.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9JE_3-VgW23vexsoPCaq1N10ZCJuaYfzOBM0T8dOcXYDdI6Vu_m-U6K31GBbyQixDu4uKJ1IzTjnoxTc7IugktGfJGu7uzLIREO3bgb68zdo6KxygIAQXY2V_g1zkYME2BENvS89wBZkM/s320/DSC07294.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5357020531293144050" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com2tag:blogger.com,1999:blog-6932055770954013719.post-1536811960428451672009-05-15T13:31:00.003-05:002009-05-15T13:40:11.308-05:00Update and Great StridesWe 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 :)<br /><br />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. <br /><br />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. <br /><br />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 <a href="www.cff.org/great_strides/courtnieallen6137">here</a><br /><br />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.... <br /><br />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).<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_W3DQHtytYi0bTussyDryiOXsR6iNGpYO4Bj_DNLO7oAWJaytWKj4yBN5gI9j83Rzg8fC1A7Ct6HyjkxQJWqWUxqqy7KJDsyNOfhFZ5NAzFWAqjkyJ2DKYsiK_Ynodd-LHvSbDD_MvJPk/s1600-h/DSC00021.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_W3DQHtytYi0bTussyDryiOXsR6iNGpYO4Bj_DNLO7oAWJaytWKj4yBN5gI9j83Rzg8fC1A7Ct6HyjkxQJWqWUxqqy7KJDsyNOfhFZ5NAzFWAqjkyJ2DKYsiK_Ynodd-LHvSbDD_MvJPk/s320/DSC00021.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5336122177318072722" /></a><br /><br />30 Weeks- Only 10 more to go!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP5oshQd-G4-l3uPxr0N5JG6QNMLDQ0dJ18V3F1uEmqtnXjHkPF4W5I5AmmB_F_hkD1wgaoulIyOB4w3nJCH0Em0OuALDDoHq4kjquiDpNevlkcA9rxuLJTmtYyhzhywg4KSLYirU3vKrM/s1600-h/DSC00022.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP5oshQd-G4-l3uPxr0N5JG6QNMLDQ0dJ18V3F1uEmqtnXjHkPF4W5I5AmmB_F_hkD1wgaoulIyOB4w3nJCH0Em0OuALDDoHq4kjquiDpNevlkcA9rxuLJTmtYyhzhywg4KSLYirU3vKrM/s320/DSC00022.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5336122294509813666" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com2tag:blogger.com,1999:blog-6932055770954013719.post-18168431771035724102009-05-01T23:55:00.003-05:002009-05-02T00:00:19.401-05:00Awwww, 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. <br /><br />Speaking of sleep, I think that I am going to go enjoy some :) <br /><br />I will leave you with a picture of Luke being super bored during an antibiotic infusion.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghl2FRSLsBf7m1UbEvVqr4BJU_7puIpYpjaudoO1bjRKHRVYfzOY4dSAFzIZLydHGuI-4qESddXth56YxgNP-NxE9c4aVL3I2xUVcoUx3OgBxVRJxZ0VibL4mIdtNbxY2peXCMwv50N76G/s1600-h/DSC00008.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghl2FRSLsBf7m1UbEvVqr4BJU_7puIpYpjaudoO1bjRKHRVYfzOY4dSAFzIZLydHGuI-4qESddXth56YxgNP-NxE9c4aVL3I2xUVcoUx3OgBxVRJxZ0VibL4mIdtNbxY2peXCMwv50N76G/s320/DSC00008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5331086414372088882" /></a><br /><br /><br /><br /><br />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 :)<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFP4aq8mdtCXMRQQYNlO1r5APMMdRSgSKqlg7SRJxvqOJk-sbFsfEaXaI0Ob-TxTprZv7SZLcFz8b-GXhd6lO5HXz5oQRqoQDjTz7CqkaeNH7dS4xDh8AbTJnEt2ymGLV5KvFP1hTM_LjG/s1600-h/DSC00012.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFP4aq8mdtCXMRQQYNlO1r5APMMdRSgSKqlg7SRJxvqOJk-sbFsfEaXaI0Ob-TxTprZv7SZLcFz8b-GXhd6lO5HXz5oQRqoQDjTz7CqkaeNH7dS4xDh8AbTJnEt2ymGLV5KvFP1hTM_LjG/s320/DSC00012.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5331086420496448594" /></a>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com4tag:blogger.com,1999:blog-6932055770954013719.post-58493304847045825652009-04-29T15:44:00.003-05:002009-04-29T15:59:20.106-05:00PICC's. Ports, and PoopI 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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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! <br /><br />I will try and post more often but like I have said before, I make no promises :)Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-43685048219193701262009-04-20T21:28:00.002-05:002009-04-20T21:38:58.284-05:00I 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. <br /><br />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. <br /><br />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. <br /><br />We had some friends over for a great Easter weekend and it was nice to catch up with them. <br /><br />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. <br /><br />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 :)<br /><br />I hope all is going well with everyone and I plan on catching up with some blogs tonight. Toodles!Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com2tag:blogger.com,1999:blog-6932055770954013719.post-91884883518467347482009-03-28T21:59:00.004-05:002009-03-28T22:02:12.879-05:00Totally Understandable!Please read <a href="http://www.mycharmingkids.net/2009/03/i-am-tired.html">this blog entry</a> 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). <br /><br />Please keep praying for little Stellan. I know that his family will appreciate it. <br /><br />Read and please try to understand how hard this is on the whole family right now.Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com2tag:blogger.com,1999:blog-6932055770954013719.post-82623784104134558502009-03-25T12:31:00.003-05:002009-03-25T12:33:18.425-05:00Please Pray!I have been following Mckmama for some time now and I really enjoy her blog. <br /><br />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 :)<br /><br /> <center> <a href="http://www.mycharmingkids.net"> <img src="http://i145.photobucket.com/albums/r208/jennisajoy/BLOG%20DESIGN/ONCEUPONABLOG/MckMiracleButtoncopy-2.jpg"/> </a></center>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com1tag:blogger.com,1999:blog-6932055770954013719.post-67796939465512841532009-03-18T09:07:00.001-05:002009-03-18T09:09:54.011-05:00Oops!I forgot to post this the other day. I hope that you enjoy it as much as I did :)<br /><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/zGLo-E-JFzs&hl=en&fs=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/zGLo-E-JFzs&hl=en&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object>Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com4tag:blogger.com,1999:blog-6932055770954013719.post-74714553025451278272009-03-18T09:00:00.001-05:002009-03-18T09:02:01.402-05:00Wordless Wednesday- Park Time!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRs9u13xBEWZbhUJsUzIcP7XBIlm2Ca_ojHDmmMiQV2ARNIXSKNy41SYkuk9vHAkmZGhfrd_H7fUpyoUu2wiprdwVeG7k1A3557AZkgOCpOIag4KDs37VOFYPop8aIPr7hY-5x1AFR-r-b/s1600-h/IMG_3102.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRs9u13xBEWZbhUJsUzIcP7XBIlm2Ca_ojHDmmMiQV2ARNIXSKNy41SYkuk9vHAkmZGhfrd_H7fUpyoUu2wiprdwVeG7k1A3557AZkgOCpOIag4KDs37VOFYPop8aIPr7hY-5x1AFR-r-b/s320/IMG_3102.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5314527708216173362" /></a><br /><br />Gotta love the swing :)Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-12182040408738305882009-03-12T09:30:00.003-05:002009-03-12T09:34:32.477-05:00A Pirate?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5zXY70cGgJoFZrIMT07MT2As8gX7FPYiGih-Iq0nO_eGBay9LHhNPDbQB8IsBKSFQnoBMxKAfNTwLmCaKjJ5QU8uBVVd7WSkWjib4SegjJLxtsMTgE5xrGE40Xl8iNY5AUoF-HqftnS_P/s1600-h/IMG_3089.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5zXY70cGgJoFZrIMT07MT2As8gX7FPYiGih-Iq0nO_eGBay9LHhNPDbQB8IsBKSFQnoBMxKAfNTwLmCaKjJ5QU8uBVVd7WSkWjib4SegjJLxtsMTgE5xrGE40Xl8iNY5AUoF-HqftnS_P/s320/IMG_3089.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5312309596782536530" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2i8F9DH1PXcJp-DW0WW8_mCA2WoyXNSJ4yj9Nt_OEsFrUkPGgyXn3zMTYuSRTSLA3h-jYLuIFYuXPzE24ATfGhJ6N_vHSU9gGVuTKJKcNCLC4kxzELBpWyMn2TvOgeo1k1XZplnKJQn1U/s1600-h/IMG_3087.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2i8F9DH1PXcJp-DW0WW8_mCA2WoyXNSJ4yj9Nt_OEsFrUkPGgyXn3zMTYuSRTSLA3h-jYLuIFYuXPzE24ATfGhJ6N_vHSU9gGVuTKJKcNCLC4kxzELBpWyMn2TvOgeo1k1XZplnKJQn1U/s320/IMG_3087.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5312309586560605858" /></a><br /><br /><br />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. <br /><br />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.Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com3tag:blogger.com,1999:blog-6932055770954013719.post-68485491026974213422009-03-11T10:02:00.002-05:002009-03-11T10:09:54.332-05:00Clinic UpdateJust 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 :) <br /><br />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 :( <br /><br />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.<br /><br />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.<br /><br />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.Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com2tag:blogger.com,1999:blog-6932055770954013719.post-46848273702629522262009-03-08T23:51:00.002-05:002009-03-09T00:02:24.376-05:00AAAAAHHHHHH!!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! <br /><br />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. <br /><br />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. <br /><br />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 :)<br /><br />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!Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com0tag:blogger.com,1999:blog-6932055770954013719.post-11906161312382448082009-03-05T12:45:00.001-06:002009-03-05T12:46:54.939-06:00Cystic Fibrosis Foundation<object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/ht3FxIg6k-M&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1"></param><param name="allowFullScreen" value="true"></param><embed src="http://www.youtube.com/v/ht3FxIg6k-M&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1" type="application/x-shockwave-flash" allowfullscreen="true" width="425" height="344"></embed></object><br /><br />Please consider donating to Luke's Legion. For more info check out http://cff.org/great_strides/courtnieallen6137.<br /><br />Thank you.Courtniehttp://www.blogger.com/profile/05032154054139102775noreply@blogger.com1