James, Kristen & Ruby

Kristen, my friend since birth (practically), just had a baby girl this morning. I'm very excited for her, but will continue to pray for her as Ruby was around 25 weeks along (I think I have that right). She's doing well so far, but it will be a long road for awhile. Please pray with me that Ruby will thrive and that mom will regain her strength as well. And, for James, as he now has a new role as well.

RUBY COSETTE

1# 9oz.

2:30 AM

Congratulations James and Kristen!!!

FURIOUS about NBC's SNL sketch

This is the email I sent to NBC regarding SNL's (Saturday Night Live) sketch about Todd Palin. I did not see it, but heard about it today and looked it up online. The video has been taken down from youtube and is not viewable on NBC either. Interesting! However, I was able to read the transcript here.  http://www.wnd.com/index.php?fa=PAGE.view&pageId=75852

SNL crossed the line in a BIG way. The sketch implying that Todd Palin had sex with his daughters was crude, irresponsible and NOT funny. I can only imagine the uproar there would be if a similar sketch was done on Obama. I'm not suggesting you do that, because it's wrong no matter who the "target" is. But, something should be done about this, starting with an apology to Todd, Sarah and their family. I'm done watching SNL. It's a waste of time. For a show that is supposed to be a comedy, where is the humor? It's not funny to me.

Here is where you can send an email to NBC. They SHOULD be held accountable.

http://www.nbc.com/Footer/Contact_Us/

This IS outrageous. Immitating politicians can be humorous and all in good fun, but THIS was WAY past the line. This was not funny. It was distasteful and NBC and SNL need to realize that we, the American viewing public, are not happy with it and will not let it slide.

Medical Update

Taylor and Lincoln had their CF check up on Wednesday.

Taylor is doing great with her weight. She's 1 oz. shy of 15 #'s! Keep it up girl!!! We just might get into those 6-9 months clothes while she's actually 6-9 months old! Normally, a petite, little girl is not a bad thing, but with CF, the more "meat" the better! It improves lung function (in CF patients) and gives a little "cushion" during an illness that may cause her to lose weight, due to vomiting, diarrhea or just not feeling well enough to eat. So, unlike most households, we encourage high calorie and even high fat diets. The high fat issues does need to be balanced with nutrition and some fats are better than others, but the goal is to keep them at least at 50% or higher on the growth chart. She's not there yet, by far, but we're working on it!

She does have a cold, probably viral, and is quite congested again. The Dr. added Pulmicort to her breathing treatment regimen. They said to discontinue the Qvar (steroids). That's a good thing since I never gave it to her. I just couldn't bring myself to put her on steroids. It can cause mood swings, can stunt growth and have other side affects. I decided to hold out and see what they said at this appt. This Dr. didn't even mention the steroids. The CF nurse coordinator called me after we got home to tell me they overlooked the Qvar and to discontinue it. Yeah!!!

I don't recommend being your own Dr.! (haha), but I also know that, especially with CF, dr.'s are aggressive and quick to throw medications at each problem. You just have to go with your gut because the facts are that this aggressive method has improved the lives of many with CF and have even added years to their lives. But, you still have to be smart about it. (I'm not suggesting the dr.'s aren't smart, but I am the 24/7 caregiver of my children and I know better than anyone how they are doing and how they respond to things and I feel comfortable in my ability--through observation and prayer--to decide what's best for them.) I might make mistakes, but hopefully, not enough to make a big difference and hopefully, I learn from them and know what to do next time!

Lincoln's doing great too! He doesn't have a cold and he's just 2.5 oz. shy of 30#'s. He's well above the 50% mark on the growth chart. On paper, (except for the one that shows the lab results are positive for CF), you wouldn't know he had CF. This is no guarantee that he will do any better than anyone else in 10 yrs, 20 yrs, or whatever, BUT, it's great for now and we Praise the Lord that he's so healthy right now. 

Jackson's check up is next week. He seems to be doing pretty well too. I don't think he'll have any issues to worry about. He was supposed to have a 24 hr. EEG, but the neurology clinic never scheduled it and I think at this point we'll wait to see if he has a 3rd seizure. Because I think his trigger is sleep deprivation, we're going to just try to make sure he's in bed at a decent time all the time. That said, last night we got home around 11:30pm. BUT, he was fine this morning.

Carter is expecting his new glasses any day now. The eye that they are working on correcting has improved and his old glasses were too strong! Yeah! He only has to patch his other eye for a couple hours a day on the weekends. His dr. is very conscientious about him having to patch at school and tries to avoid it if possible. That's so wonderful! And, thankfully, he continues to improve and can do it that way. He's been in Kindergarten for a month now and is doing well. 

A testimoney opportunity...because of CF

I belong to a few CF related online groups. One is specifically for Christians, the other two are not. In one of the "other two", a new member introduced herself today and in a response to several posts directed at her (a whole other story!), I welcomed her and introduced myself very briefly.

She picked up on the fact that I have 3 kids with CF and asked if I would share how I came to the decision to have more kids. She just has the one with CF so far, but wants more children.

My answer could not be explained without sharing my faith, because it is 100% due to my faith and promise of what is yet to come that brought me to my decision. I thought I would copy my response to her here in case any of you are interested in how we came to that decision. It may also be good information if you ever talk with someone who questions our decision! I would love the opportunity to address them personally, but no one has been so bold as to come right out and ask me, (though I know there have been a handful who think we should have stopped after Jackson.)

Anyway, my point is not to "prove" anything, it is to share with you the opportunity I had to share my testimony to a LARGE audience from all over the world. I don't know where Jenn stands in her faith, but perhaps this will touch SOMEONE in the group and bring them closer to a life with Jesus.

Here it is:

Jenn,
I don't mind that question at all. In fact, sometimes I appreciate the opportunity to "defend" our decision to have more. Not that anyone has made me think I need to. I have heard through the grapevine that there are those (not on this list, or any other) that question why my husband and I keep having kids knowing the risks. Their opinions don't really phase me, but I also don't like knowing that others have questioned a personal decision between my husband and I.

To answer your question, I will talk about my faith, so if anyone else reading is not interested in reading what could be perceived as "religion talk", you may want to stop here. =) You've been warned! ;)

Our first child, a son, was born without CF and life was great! We had decided before marriage that we wanted four kids. So, pursuing that goal, we had our 2nd child, two yrs later, another son. This time, life wasn't so great. He was not "thriving" and after 3 wks., was diagnosed with CF through newborn screening (Yeah for newborn screening!). Obviously, it was a hard hit for us, as everyone on this list knows all too well. We were blindsided because we have no relatives at all with CF and hadn't really heard of CF that we remembered. At that point, I struggled with what to do next. I still wanted more children, but didn't want to keep "doing this" to my kids. It was one thing to have it unexpectedly, but to knowingly allow a child to be born with CF, was I okay with that? I wasn't sure.

To explain what it was that secured my decision for me, I must first tell you that I have a personal relationship with Jesus Christ and I believe that that is the way to heaven when we die.

A dear friend of mine was talking with me one day as I was asking the questions, "do we have more?" How will my child feel knowing that I essentially "allowed" this to happen to him/her? etc. She pointed out that we never really know what the journey of life will bring for any of us and that though this life may be tough for a time, it does not even compare to what we have to look forward to after we die. So, I considered that statement for a long time and it gave me comfort. As much as I do not want to see my children suffer in anyway, this life is but a drop in the bucket and there is so much more to come that IS worth living for.

That does not mean I wasn't absolutely heart broken with each new diagnosis, but the realization that God IS in control and that He has a plan for each of my kids' lives and for my own (and my husband's) does get me through. I still have days that I question why God allowed this in our family and have often tried to "inform" God that I am not capable to handle all of this, but I also know that we aren't given more than we can bear.

So, that's my answer!

That said, there are many on here who have had other children after the cf diagnosis and those children do not have CF. Oh, I wish that were our story, but I don't regret our decision to have more kids. My kids are SO precious (of course!) and just add such a wonderful dynamic to the family. It's a tough decision to make and the answer that was right for me may not be right for others, but I have peace with it and I hope that you have peace with whatever decision you make.

Thanks for asking! Hope you're not regretting your question! haha

Leah

Vitamins to Siberia

I'm so happy, I wanted to share with you...

A few months back, through an online CF group, I found out about a boy in Siberia with CF who does not have access to vitamins. People with CF have trouble absorbing fat soluable vitamins, mainly A,D,E & K. So, some companies make specific vitamins for CF people. I give my kids vitamins, but I use natural ones (as opposed to the synthetic ones). But, in every enzyme shipment, I receive one bottle of vitamins for free. I've hung onto them in case we ever needed them, but have not yet used them. So, when I found out about this boy, I decided to ship mine to him. It wasn't as simple as shipping them in the US. There are many restrictions on what and how you ship to other countries. And, it can be tricky getting certain items through their customs because it may 1) go against a law or 2) be valuable enough that the customs agent decides to swipe it!

But, this boy needs these vitamins and I wanted to give it a shot. It is a Christian family and I believe, from what little I do know of them, that his dad is a pastor there. I packed up the box and headed to the post office. I filled in the customs declaration sheet and marked it as a gift, as instructed. But, there is a box that requires detailed information of the items in the box. UGH! What do I do? I went ahead and wrote "vitamins". I didn't want to lie, but I didn't want to raise any flags. I also didn't want to write one thing and end up having customs open it and find it as something else and confiscate it. I have no idea what goes on and so I just wrote what it was. And then prayed. I knew that if God wanted these to make it to this boy, He would make it happen.

I just received word today that the vitamins made it to them safely! YEAH!!!! Praise the Lord!!! The exciting thing, to me, is that I will get to meet this family some day. Probably not this side of heaven, but that's okay. This may seem like a minor thing to some of you. Maybe you ship overseas all the time. But, for me...to be able to specifically help a boy with CF, in this way, just makes my heart rejoice!

Now I'm working on a package of goodies for a family in Indonesia who are just starting there as missionaries. Pulling off labels and taking things out of their containers. I feel like a smuggler! I'm hoping the baggie of oregano doesn't cause problems. Hmmm.....

It just can't be simple!

Yesterday, Greg, Jackson, Taylor and I all took Lincoln to the dr.'s (Carter was in school), to get his stitches out. We were looking forward to them being out so that we didn't have to be concerned with infection, as the wound would now be closed.

I had been thinking all along that his appt. was at 9:30am, so that's what we planned on and even arrived early (something that doesn't happen often). Just as I was pulling into their parking lot, I pulled out my planner to just double check...his appt. was at 9:00am! UGH!!! SO...here I was happy with myself that we managed to arrive about 5-10 min. early only to realize that we were actually about 20 min. late. :(  

They said they'd fit us in, but of course, it took longer as now they had a waiting room full of children. Something I try to avoid since a good portion of those kids/adults may well be sick and we don't want to get sick. They have a well child area, but Jackson has a runny nose so it's not that simple.

I brought Greg with me because I knew I couldn't handle holding Lincoln down while keeping Jackson and Taylor occupied, so Greg got the fun job of holding him down. That was the part Lincoln disliked the most. The nurse held his head and the dr. used a scalpel (yep!) to cut the stitches. He was about half way done and the wound started bleeding. It wasn't much, but enough to tell us that it had not closed completely yet. So, he left the rest of the stitches on and put steri-strips on to keep the skin together and to keep it from opening more. He put some glue on his chin and attached the strips to that and assured me they would be "stuck on good". 

Well, this morning, as I was having my devotions, Lincoln crawled up in my lap and I noticed the steri-strips were gone. Oh my. The wound looks pretty good and I don't think it will be a problem. We go back to the dr. tomorrow afternoon to have the remaining stitches removed. Hopefully...it will be that simple!