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.