Saturday, December 13, 2008

So, once again, it's been a long time since I last blogged. Shortly after the last post, (Oct. 31), we left for our annual trip north, to NY and PA. Greg goes up to hunt. I stay with family. This time of year, I would need to grow antlers out of my head to be noticed...haha...but it's okay. It's just for a couple weeks and it's the highlight of his year!

We were in NY/PA for about 2+ wks. It was a nice, relaxing time! I attended Twin Orchards Baptist Church (my home church for 28 yrs.) and it was good to see some "old" friends. The following Sunday, we went to my dad's church, Community Bible Church, and I even got the boys, all three (!), to sing with me, well...sort of! Carter sang out nicely. Lincoln (almost 2!), sang in his own language. Jackson, had his back towards the congregation and I had to take the microphone away because he was hitting it. But, it was a blast! I hope that singing in church is something they will develop and grow to love it too! I'll try not to project my dreams onto them! (haha)

Greg and I have been working on buying a house, so we decided to leave Jackson and Lincoln with my parents for 2 weeks so I could come home and clean out and re-organize. I did get a lot done, but we also took a few days to visit Greg's brother and his wife for Thanksgiving. We had a nice time and Beth and I managed to pull of a Thanksgiving dinner that was not only edible, but enjoyable!

Then, it seemed like we had appointments and things everyday for awhile, but I was still able to get more done than normal. Tuesday (the 9th), my mom and the boys flew into Orlando, and Taylor and I picked them up. It was SO good to see the boys. They did look more mature than I remember. That always seems to happen.

The next day, while wiping Taylor's nose (something that's been going on for about 2 wks), I decided to take her to the Dr. That turned out to be a good decision. He said she had an ear infection in her right ear. No problem...some antibiotics and she'll be good...but then...he listened to her lungs and heard wheezing. So, he had her do a breathing treatment at the office so he could see how she responded. She responded well and he was thinking we could probably treat her at home, but wanted to rule out pneumonia first, with a chest xray. So, we drove down to the clinic for the xray. We waited there for his phone call. He said she DID have pnuemonia in her right lobe. SO...because she also has CF, it's not just "send her home on meds and come back in a week." This is a trip to the hospital. We were there in July for pneumonia, as you probably remember, and that lasted 5 days. My mom was scheduled to leave in 2 days (Fri.).

I came home from the xray, packed up some things for the hospital, took the two older boys to Awana and to switch vehicles with Greg (he has a 2-seater truck and I drive an 8-seater van), and left Lincoln at home with my mom. Grabbed some dinner on the way, and Taylor was admitted by about 7pm.

They had to do all the initial lab work...blood tests, sputum cultures, nose swab, etc. She pulled out the first IV line they had put in her hand, so they put a new one in her foot and wrapped it with a soft splint and lots of tape! It did the trick and I think she was much more comfortable with it there. I was! =)

She was a trooper the ENTIRE time! All of the nurses loved working with her because she would just smile at them the whole time. She's such a sweetie. It was nice to know the other kids were being taken care of at home, with my mom and Greg and I could just focus on Taylor. It was hard though because I had just gotten Jackson and Lincoln back and then I left. Poor kids!

So, they let us go home on Friday with antibiotics and frequent breathing treaments with additional CPT (chest physio-therapy). The Dr. thinks that her pnuemonia is viral, so it will have to run it's course. She's on the antibiotics for her ear infection and as a preventative measure just incase the pnuemonia is bacterial. She did not culture pseudonomas (which anyone who deals with CF will know, this is wonderful!).

So, there you have it!

Oh, I should mention, that since my last post, Carter has turned 6, Jackson turned 4 and Lincoln will be 2 in 8 days! Taylor is now 10 months old!

Friday, October 31, 2008

Some Videos

I have recently posted some videos of the kids on facebook. Instead of uploading them here, I thought I'd just include the link that will allow you to view the video there. If you are unable to click on the link, simply copy and paste it into your web browser.

Here are two of them. I'll be adding more later and will let you know!

This one is of Carter singing a song he made up!

http://vupload.new.facebook.com/video/video.php?v=51194656072

This is Lincoln at 12 mos. old, "dancing" to Christmas music.

http://vupload.new.facebook.com/video/video.php?v=51333481072

Monday, October 27, 2008

It's been a month?

Wow...I didn't realize it had been a month since I last posted here. Life has been busy...but it's a "good" busy.

The kids have been doing well. But, it seems another round of colds have hit us.

It's cold here today...YEAH! Carter needed a sweatshirt to wear to school. I'm sure he doesn't need it by now, but it's SO nice for us to have those cold mornings. It's supposed to get down into the 40's by Wednesday. It's hard to believe that I get excited about that, but I have all these nice, cozy sweatshirts and pajamas, and I hardly ever get to use them. And socks! I'm wearing socks! haha

We're getting ready to head up north again for our annual trip. This seems to be one of two main focuses right now. This is Greg's yearly hunting trip, which is what keeps him going the rest of the 50 weeks a year, in Florida. The six months prior to the trip, he is planning, practicing and preparing to go. The six months post trip, is re-living the excitement of sitting in a tree, freezing cold, waiting...waiting...waiting. (Yes, that is called sarcasm.) For him, it's the highlight of his year. I don't pretend to understand it, but I do appreciate it for what it's worth to him and am glad he's able to go. The bonus to this, is that he hunts near my parents and brother and family (about an hour away). So, the kids and I get to spend time with them, while Greg is MIA. We also take some of that time to get down to PA to visit with Greg's parents and brother and family. I'm hoping to make some arrangements with both sets of Grandparents, so I can get some R&R of my own!

I am always glad to have a chance to visit my "home" church, Twin Orchards Baptist Church, in Vestal. This is the church that I attended since birth until Greg took his first youth pastor position in West Oneonta. Twenty-eight years at one church...with the same pastor throughout...what a blessing! There are still several families there that are "near and dear to my heart". I can't wait to see them!

I will also get to see one of my best friends, Melissa, and her "growing-like-a-weed" baby girl, who was born while we were traveling to NY last year! So, incase math isn't your strong suit, that means she'll be turning ONE YEAR OLD soon! Happy Birthday, Miracle! And, I'll get to introduce them to Taylor.

So...have you been curious? Would you like to know what our other focus is right now?

Well...I'm trying NOT to get my hopes up TOO high (though it may be too late for that), BUT...it looks like we will be putting an offer on a house, here in Lakeland, this week!!!

We found a house that is a 4 bedroom/2 bath house, 1800 sq. ft., with a nice back yard, a 2 car attached garage, with ALL tile flooring...in our price range! It was built in 2006. We don't want carpet because of the kids with CF. Carpet hangs on to bacteria, which can include mold, and these can be devasting for CF. Also, Carter is allergic to dustmites, so this will eliminate the majority of the problem for him. This is the first house we've seen with no carpeting. And, having a 4 bedroom house, would allow Taylor to have her own room and Lincoln will probably have his own room. Carter and Jackson have been sharing a room since just before Lincoln was born (about 2 yrs), and, they have a bunk bed, so that will most likely be the combination. The great thing about this, is that from things I've read, if you have more than one child with CF in the same house, they recommend separate rooms. This helps with picking up germs from each others bedding, or from spreading germs through coughing at night. I'm not sure if this will make much of a difference, but every little bit has to help some.

One of the best things about this house, is that it doesn't need any work to move in. Most of the houses we looked at, even the ones in really good condition, needed SOMETHING done...whether it was painting or shampooing the carpets, or ripping them up to put tile down, etc. So, this house, SEEMS to me, to be gift wrapped from God! The only thing we will want to do right away, is add fencing to one side of the property, for our dog. The other side already has a fence and the back is blocked off by the subdivision wall.

I am trying to be cautious in my enthusiasm, BUT, we have been living in a single-wide trailer for almost 3 years (in Jan.). When we started out here, we only had 2 kids. So we went from a family of four in a 3/2 trailer (not too bad), to a family of six (not that easy!). We've been praying about this for some time now and this seems to be the right timing. It is unfortunate for home owners and sellers how the market has turned, but for us, this is a blessing. If we wanted to buy this same house a year ago, it would have cost us anywhere from $60,000-$100,000 more. Can you imagine?

We would appreciate your prayers as we make this decision! We'll keep you posted!!!

Saturday, September 27, 2008

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!!!

Monday, September 22, 2008

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.

Friday, September 19, 2008

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. 

Saturday, September 13, 2008

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

Monday, September 8, 2008

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.....

Wednesday, September 3, 2008

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!


Thursday, August 28, 2008

Never a Dull Moment

Yesterday around 11:30am, I heard screams coming from the older boys' bedroom. Jackson and Lincoln were "playing" in there. Jackson likes to pick on Lincoln, so my first thought was that he was just bugging him AGAIN. But, I quickly realized that the screams were more serious and not stopping. Lincoln met me in the hallway with blood gushing out of his chin. I took off his shirt (which was, thankfully, red!) and tried to hold it on his wound to stop the bleeding.

Ever try holding a strong, 30# toddler still...while he's crying and in pain?

Once I got a good look at it, I could see he needed stitches. So, once again, I called Greg to come home. I needed him to help me hold Lincoln, so I could get the bleeding to stop (or at least slow down) and then to stay home with Jackson and Taylor while we went to the ER. By the time Greg got home, Lincoln had already calmed down and I was able to get a bandaid on. I was surprised that the bandaid worked. Greg washed him up (had blood all over his neck and face) and I got ready to go.

Once we got there, they put us right through to the pediatric ER. I was glad about that, because with his CF, he shouldn't be in a waiting room full of sick people and I was prepared to "fight" for that, but really hate doing that, so I was glad I didn't have to. They put some numbing gel on his wound and then gave him a blend of Benadryll, and Tylenol with Codene. That combined with the fact that it was his nap time, he went to sleep pretty quickly. They waited 40 min.'s for the gel to work and came in to suture. He woke up for that, but didn't feel it. The nurse wrapped him up tight in a blanket and I held his shoulders with my hands and leaned on his legs. The nurse held his head still and the Nurse Practioner did the suturing. There were two students observing...not sure if they are nursing students or what.

I wasn't sure if I wanted to watch, but after the first suture, it didn't bother me. It looks so wrong to see someone "sew" flesh (sorry, everyone!), but I know it had to be done. I had been hoping they would glue it, like they did Carter's forehead a few years ago, but they said it was too deep for that. It makes me wonder if Carter's wasn't too deep and they should have sutured rather than glued. And now that I think about it, I think our Dr. friend who was there and came to see us in the ER suggested that, but the younger dr. seemed set on glueing. I wanted the least invasive choice, but I'm not a Dr.! Oh well.

So, anyway, Lincoln is fine and not bothered by the sutures. It has been difficult keeping it dry as it's right by his mouth and everything he eats and drinks gets on it. And, he likes to take his bandaid off. But, I think it will get easier, as he gets used to it.

So, crisis over.

And, just in case we wouldn't know what to do with ourselves to have a relaxing evening after church, Carter decided to throw us off with puffy eyes that are so swollen he can hardly open them. It happened once before, last year, sometime. We never knew why and it went away in about 36 hours, I think.

I'm not sure what caused it, but I have a theory. Last night, someone gave my kids a box of Reese's cereal. Carter knows he can't eat it, so that's not the problem, but Jackson and Lincoln were eating it while we were waiting for Daddy, so we could go home (we drive separately, so we could have left, but I usually wait around anyway). Then, all three were sitting in the back seat, with Carter in the middle. That's because this week, I'm picking up 3 girls at school when I pick up Carter, and dropping them off at their home, so I have them sit in the middle seat (2 by Taylor and one up front with me). Anyway...I'm wondering if the boys had peanut residue on their fingers and at some point touched something that Carter touched and then he rubbed his eyes and they reacted to that. Makes sense to me! Greg and Carter ran out for Benadryll chewables last night, but it hasn't made much difference. He's home from school today and we'll see how it goes.

I wonder what today will bring!!! Haha

Taylor's Growing!

Taylor had a check up last week and weighed in at 13 #'s 11.4 oz. That means, she put on a couple pounds since having pneumonia. That's amazing girl! So, she's up from 3% on the growth chart to almost 15%. Not bad! The day she was admitted for her pneumonia, she had only gained 5 oz. in the previous 4 weeks, so I was expecting her to drop off the growth chart completely and feared the Docs would say it's time for a g-tube. BUT, Praise the Lord, we don't have to consider that now.

Saturday, August 16, 2008

Family Photo Shoot & Kindergarten & Health updates

We finally took the time to get everyone ready for a family photo shoot. A college age girl from our church is really into photography and does a nice job. We asked her to take pictures for us. We met her at Lake Parker Park and just started taking pictures! Many of you, who read this blog, have already seen them on my facebook. But, for those of you who have not yet seen them, here is the link.
http://www.new.facebook.com/photo.php?pid=1148291&l=be8bf&id=601081072

I'm really happy with the pictures. It's not easy getting 4 kids to smile and look at the camera all at the same time, but we have a lot of nice pictures and I cherish them! I'd like to do this more often now.

Carter starts Kindergarten on Monday! He's SO excited. He will love it. He loves being around other kids and he loves to learn. I can't wait to see him learn to write well and begin to read. This will be fun!

Jackson doesn't start pre-k for another year, so I'll still have 3 kids at home all day, lest you think I'll be bored with Carter at school! Haha! =) I'm sure you weren't thinking that anyway!

Taylor seems to be doing better. She's still on antibiotics for a few more days and the breathing treatments will continue, but we don't have to do as many a day. That's nice!!! The extra CPT (chest percussion therapy) will continue until I feel that most of the extra mucous is out of the way.

Jackson also seems to be fine. In case you don't know, Jackson had a 2nd seizure on Tuesday. His first one was on June 2nd. So...now the neurologist wants to do daily meds to prevent them. I'm not real comfortable with that yet. So, if you are praying for us, please pray that we don't need to go that route. I will probably wait until he has a 3rd one to make that decision. It could be months from now...or never! In the mean time, we have some medication to give during a seizure if it lasts longer than 3 min. So far, they seem to last about 3-4 min., but I honestly don't think to look at the clock right away, so, if it does happen again, I'm going to TRY to remember to look right away. I could tell it was coming on, so I could have looked, but didn't think to. And, that's the first question the dr.'s ask..."How long did it last?" Oops!

By the way...I never did post the results of Jackson's MRI. It shows a small scar on the left side of his brain. It probably happened from a head injury, though we're not sure when that might have happened. But, he's a 3 year old BOY...so...it could have happened ANY time! That could be the cause of his seizures. We'll do a 24 hour EEG in the near future to once again check for epilepsy. He wouldn't be the first child with CF and Epilepsy (though there is no connection between the two), so we'll see! I personally feel that we have enough health issues to deal with between the four kids, but, I don't think I get to vote. I can, however, petition and you can too (prayer)!

I was just thinking through all of the health problems my kids have and thought it'd be fun (?) to list it here. I'm NOT doing this for a pity party. So, please don't take it that way. It's just amazing to me, sometimes, to think through it all. I thought you might like to know too!

Carter:
Asthma
Peanut, Dustmite and Cat Hair allergy
Wandering "Lazy" Eye
Eczema
Jackson:
Cystic Fibrosis
Seizures
Mold allergy
Lincoln:
Cystic Fibrosis
Asthma
Taylor:
Cystic Fibrosis
Reflux
currently: pnuemonia
Also, as a note of interest, to some of you, anyway...the colors I put their name in, (above), are the colors I use at home to color-code their things so that they don't share and contaminate each others stuff, such as nebulizers, sippy cups, water bottles, etc. Works great!
Ok, I'm done! Have a great day!

Wednesday, August 6, 2008

Where do I start?

WELL....let's see...as usual, it's been a while since I last blogged. I'm sure it's hard to imagine that I have a few other things to do during the day that keep me from writing.

There is a lot to update on, so I'll just start with one kid at a time and try to get it all in, or else I'll come back later and finish. Let's just see what happens!

We'll start with Taylor, since, well, it should be girls first, right? Also, because her news is what has put a spin on our lives lately! She had a runny nose for about a week and a half. It ran clear, so I wasn't alarmed. With CF, any cold can become a problem, but in our experience, usually a clear running cold (ok, snot), isn't a big deal. If it were to turn green, we'd go get an antibiotic. However, this runny nose led to a cough and it got progressively worse until it was just really bad last Wednesday (July 30). She was breathing fast and her cough sounded awful (that's the technical term!). I had been in Tampa that morning with Jackson for his MRI, which I'll comment on later, so when I got home, I decided that she needed to see the Dr.
Her pediatrician was not in that day, so we saw one of his partners. The nurse took her vitals and weight and I was concerned with two things. First, I noticed that she had only gained 5 oz. in the past 4 weeks. That's NOT good. She's very small for her age already. Then, we found out she had a 101.2 fever. She had felt warm to me, but she always does and every time I took her temp, it showed normal. I had not taken it that day, though. As the dr. looked her over and reviewed her symptoms, I mentioned that she also has CF (I never know what they pull from her chart before they walk in the door). Immediately a light went off in his head and he said, she needed to go to the hospital. Ashamedly, my first thought was, "No, I have a conference to go to this weekend." I know that it's not uncommon for a CF patient to be hospitalized for 2-3 weeks at a time.
So, I went home and grabbed a few of our things. Made arrangements for someone to fill in at church and took her to the pediatric floor. There, they did a chest x-ray, some blood work, a sputum culture and hooked her up to an IV and antibiotics. They continuously monitored her oxygen levels.
Despite all the poking and prodding and unfamiliar territory, Taylor was a trooper and so happy all the time. The nurses and other staff fell in love with her and we had many offers to take her home! I always figure they say that to everyone, but I even heard them talking outside our door, to each other, about how cute she was! She is.
To make a long story short, after many breathing treatments and frequent nasal suction, she seemed to be doing well. The dr. couldn't release us until they determined what had been growing in her sputum culture so they would know how to treat her. In the mean time, RSV was ruled out and they were talking possible pneumonia. I talked with the nurses and the dr.'s and determined that it would be okay for me to go ahead and leave for San Fransisco on Friday. If that trip were for ANY other reason, I would have cancelled, no questions, but, this was the big CF conference that I have been working towards for several months and many (many of you) donated money to make it possible. The friend from church that she was going to stay with that weekend (had she not been in the hosp.) offered to stay with her as long as she was in and then take her home if she was released. I knew she'd be in good hands and there wasn't much I could do for her, so I went. It was not easy leaving her there, but I knew it was going to be worth the trip.
She was finally released on Sunday afternoon. They determined that the bacteria in her culture wasn't serious and could be treated with antibiotics at home. Greg went up to the hospital to sign all the discharge papers and help get Lisa and Taylor to her car. I got home Monday evening. I looked through all her hosp. notes and discharge papers and they mentioned pneumonia, but no one had actually said that's what it was to Greg or Lisa when she was being discharged, so I was unclear as to whether that was her diagnosis or not.
Today, Wed., she had her CF clinic appt. (good timing!). They had been informed of the hospital stay and I believe were consulted while we were there, but I brought all of the medical records and x-ray (on CD) with me. Her dr. reviewed the x-ray and told me that she did indeed have pneumonia. SO....added to her 4x's a day breathing treatments, 2x's a day antibiotics and additional chest therapy are 3 more breathing treatments (two are an inhaler used with a holding chamber, one is with her nebulizer), and another BID (twice a day) medicine. This should be interesting!
On a positive note, (and taking into consideration the difference in scales), she put on a pound in one week! YEAH!!! So, maybe the illness was keeping her from eating all she would have otherwise and hopefully her weight gain will continue. My biggest fear, these days, is hearing "G-tube" enter into the plan, so as long as she can put on weight by herself, we're okay.

I guess that's as far as I'm going to get for now. I'll just quickly mention that the conference was great and I'm glad that I went. It was the right decision. Thanks to all who helped me get there. You should hear from me soon (I'll try!) with more details and a thank you note. But, please know that I'm very grateful!

Sunday, June 29, 2008

Sick

Well, four of us are sick. Really sick. It's all a head cold, but with major nasal congestion. Lincoln started it last Sunday. Taylor woke up Monday with the sniffles and Wednesday, it was my turn. I thought Jackson and Carter were gonna make it through unscathed, but Jackson started showing symptoms Saturday night. So, Greg and Carter made it to church today. I will keep our nasty germs here and not share them with our church family. They tend to like us better with that arrangment! I wish everyone was that careful. Then maybe we wouldn't be sick! It's hard to say. You never know where you pick up these germs. Could be a grocery cart, a person, a dr.'s office...yes, ironic, I know. You can wipe everything with Clorox wipes, but then you're dealing with toxins that you and especially your kids really shouldn't be exposed to. So, what's one to do? This time, I did cave in and buy the wipes. I keep wiping down things like the phone, doorknobs, computer keyboard and mouse, light switches and anything else I can think of that might be contaminated.
Everyone has been giving me suggestions of what I need to take so that I can breathe (something I have come to enjoy and no longer take for granted). So far, nothing has been a "life saver", though I think some of it has helped a little.
On a positive note, I can't smell Lincoln's nasty diapers! Problem is, I don't always notice he needs changing right away. Oops! Forgive me, Lincoln.
Right now, I'm enjoying a bowl of Chicken Noodle Soup. I'm not sure if it actually helps or if it's just "the right thing to do" when you're sick. It's just comforting I guess. I'm also having some saltines crackers with it. Since my congestion is overriding my taste buds, the salt taste especially good to me. Helps me to know I'm not just chewing on cardboard. Or, at least unsalted cardboard.
Sorry...if my humor does not humor you...blame the illness!!!
By the way, tomorrow is our 7th wedding anniversary! Seven years, four kids, two dogs (only 1 left), and currently, little sweet ants. They are easy to get rid of, usually. Terro is amazing! If you ever have an ant problem and they are SWEET eating ants, look for Terro. Every year during the rain season, we see ants. Usually, it's the red, biting ones. I HATE those. They make me so mad. The black, sweet ants don't make me mad. They don't bite...and they're tiny. They are actually entertaining. Watching them travel to and from the poison, I mean, lovely gourmet meal I so lovingly put out for them, is fun. It's interesting watching them communicate with EVERY ant that comes in the opposite direction. It's truly like a divided highway, expect they have a front end collision with every ant...and yet no damage. Amazing.
Okay...I'm done...I guess. :)

Thursday, June 12, 2008

Good Results

Taylor had her CF check up a few weeks ago and this time she did NOT culture any Psuedanomas! So, we don't have to put her on TOBI again, for now. It's not easy giving an infant a breathing treatment. It's not easy giving a toddler one either! lol
Lincoln had his CF check up yesterday and he's doing great! He weighs 28 lbs. and is 31 inches tall. He's at 78% on the weight for height growth chart, which for CF, is amazing! He's been on very few anti-biotics in his lifetime and his lung function is great! Thank you LORD!
Jackson and Taylor go next Wed. for their CF check-up.
Carter finally got his "kindergarten" shots and we are ready to get him signed up! He's so excited. I'm not as excited as he is...it just means he's growing up and I know it's going to go by so fast. But, it is fun watching him grow up. He's so funny. If you don't know him well, and you ever get the chance, just sit down with him and have a "normal" adult conversation. You'd be surprised at how "old" he sounds for only 5 years old. But, he likes being a kid...he does well with other kids too.
This week is VBS at our church and we are having a blast! This year is "Power Lab". Group Publishing does a fantastic job and putting a VBS together and making it easy for your helpers to do their job (like the snack coordinator, craft director, etc.). I'm the VBS Director and Greg oversees building the set and then he and I and this year another Pastor are the "upfront" people that can be goofy...well the guys are goofy, I'm the "straight man!" We have so much fun doing it, but I'm exhausted now! Three nights down...two to go. =)
Have a great day!

Saturday, April 19, 2008

Great Strides 2008

We had our Great Strides walk today in Lakeland, FL. This walk is to raise money for Cystic Fibrosis research.
Our team, "Walk for the Walkers" had over 30 people (including children). We raised over $1,600! The entire group of walkers, including all the other teams, raised $18,000!!!

The CFF is well known for being very responbible with their money as 90 cents of every dollar raised goes towards research. And, it's making a difference! No cure yet, but we're on our way! Many of the studies have led to treaments that help make living with CF easier and all treatments have lengthened the lives of all our precious children.

Thank you again to those who supported us today!

Friday, April 18, 2008

Great Strides

Tomorrow is the Great Strides walk in Lakeland, FL. I have a team of about 25 walkers and we've raised about $1500! I'm so thankful for the support my friends at Cornerstone Baptist Church have shown me. People really got on board and excited about it and it just shows me that my kids are important to them.
Many of my friends and family from out-of-state have donated as well and I appreciate you all!!!
Since this is our first walk, here in FL, and we've done so well, I'm excited about what we can do next year. If everyone on my team were to raise $150 each we could get to $3,750! That would be amazing!
Next year, I'll start working on things sooner. I did start letting people know about it back in October, but then didn't do much with it between then and now. We can do little fundraisers prior to the walk to help raise money for the team, as well as individual and corporate donations.
Periodically I go on the cff.org website to see how research is coming and it's encouraging to see that many of the research studies are showing promising results. Nothing that is a cure yet, but more treatments that can help tremendously to lengthen lives and add quality as well.
THANKS FOR ALL YOUR SUPPORT!
It's not all about the money though. Those of you who pray for my kids and the search for a cure are doing as much or more to support CF research!
THANK YOU! THANK YOU! THANK YOU!

Taylor's new meds

I mentioned in my last post that Taylor would go to Orlando for her CF clinic on Wed.

Here is her update!

Her weight (9#s 10 oz.) was the same as at the pediatrician's. Which is no surprise since it was approximately only 24 hours later. But, for me, this is very good news because now I know that the scales are in agreement and so when we do weight checks, I'll know that what the scale says she's gained is accurate.

Overall she's doing well. The dietitian said that increasing her enzymes from 1 1/2 to 2 was perfect for her weight. The pulmonologist said her lungs sound great (clear of mucous), and as far as growth, she's typical for my kids. A little short, but weight for height is good.

They did a throat culture to see what might be growing in her lungs. It's not 100% accurate because there could be something in her lungs that isn't in her throat, but at her age it's the best way to get an idea of what's there. When she's older, they'll have her cough first and that should bring up whatever's in her lungs. Unfortunately, we just found out that she cultured for Pseudomonas, so we have to put her on a nebulized anti-biotic, called TOBI (Tobramycin). Jackson didn't have to be on this until he was a year old. Lincoln has never been on it (Praise the Lord!). So, it's disheartening to have her on it and only 2.5 mos. BUT...it proves to be a positive part of keeping CF lungs healthy longer. I will have to do this 2x's a day. The medication cost over $3,000 for a 28 day supply. We're thankful that insurance covers it! Most treatments with TOBI are 28 days on, 28 days off and then 28 days on again to complete a cycle. But, we will wait to see what her next culture shows to determine if she has to do the 2nd 28 days. Because it's an anti-biotic, I prefer we use it as little as possible.

Tuesday, April 8, 2008

Good Girl!

Today was Taylor's 2 month check-up. She's doing great! She weighs 9 lbs. 10 oz. You can see in her face that she's starting to fill out a little. I had to increase her enzymes again from 1 1/2 to 2 per feeding. I've had to increase them a lot sooner than I did for the boys. So far it's working. I don't know what it will be like in the future. I hope that it won't become a problem for her. There is such a thing as giving her too many. I pray that there never comes a time when they aren't working for her, but we can't increase them...but we won't borrow problems from tomorrow to get through today!
We go to Orlando tomorrow for her CF check-up. I usually try to space out the appt.'s so that her pediatrician and the CF clinic appt.'s aren't back-to-back, but it just worked out this way. I'll ask more questions about her enzymes then. We will also get the results of all her blood work and chest x-rays. Most of this information will just be a starting point for the next tests they run. They do annual labs so they can see how things are progressing and have something to compare it to. Next years' x-rays will show if there was any mucous build up through the year.
I had Jackson and Lincoln with me at the Dr.'s today and at first they seemed to be doing really well, but by the time the Dr. got in there, Lincoln was screaming (he is SO over-tired from yesterday) and Jackson wasn't being bad, but he was a little noisy. Fun!
Yesterday, we went to Orlando to spend the day with friends of ours who recently moved to Georgia. We had a great time, but the kids are exhausted!!! They are all sleeping now...which is why I have a minute to blog! But, I think I hear Lincoln waking up!
Have a great day!

Saturday, April 5, 2008

Pictures

I've been using Winkflash to print my digital pictures. I'm trying to get caught up and at least get everything printed so that I can finish my scrapbooks...well, "finish" is probably not the right word to use! Winkflash does a quality print job and their prices are the lowest I've seen. Right now they are running a sale at 6 cents a print. You do pay shipping, but it ends up being about 9 or 10 cents each. Pretty good! I just ordered all of my pictures that I took in Feb. and March of this year. How many, you ask? 774! Yikes! Well...I took some of those. My mom took many of them and my Mother-in-law took many too! That's not normal for 2 months.

Just thought I'd share that with you all!

Tuesday, April 1, 2008

It's been awhile

Well, it's been a while since I last posted. It's not easy finding time to blog with 4 kids at home, all under the age of 6! But, I have a few quiet moments right now and thought I'd update you.

I took Taylor to the Dr.'s yesterday just for a weight check. It was not a scheduled appt. I just wanted to see how she was doing because we already had to increase her enzymes from 1 to 1 1/2 per feeding. That was awfully quick as she is just 2 mos. old. I called the CF clinic last week to find out more information about her need for enzymes and they reported that she is severely pancreatic insufficient. Most kids with CF do have malabsorption problems and it is because of the mucous that their bodies produce. It blocks the pancreas from releasing the enzymes that helps our bodies digest and process fat. That is why CF kids are typically skinny and even short. (You wouldn't know that looking at Lincoln. PTL!) So, the enzymes I give them before they eat or drink anything with fat in it, helps them to absorb that needed fat. I wish they had a pill I could take to help me NOT absorb the fat! The enzymes must be working because she weighed in at 9 lbs. 4 oz.! I haven't looked that up on a growth chart yet, but I know that's good. We go to Orlando next week for her next CF check up and they will give me print outs of her growth chart by length for age, weight for age and weight for length. I intend to ask the Dietitian (who is wonderful, by the way!) what my other 2 with CF scored with their pancreatic insufficiency because I want to compare them to Taylor. She scored a 6 on a scale where 99 is on the low end. SO...she's on the REALLY low end. It will be helpful to know what the boys are so that I can somewhat gauge how she'll do. Jackson had a few months in his first year when he struggled with weight gain. Lincoln never had that problem, though they did have me start him on formula at about 5 1/2 months because his weight hadn't increase over a 6 week period. He's never had trouble since then and he's a tank now!
Interestingly enough, as much as we hear about the increase in childhood obesity and so on, for a CF child, the bigger the better! I'm sure there is a cut-off point to that theory, but studies show that the CF patients who weigh more, are healthier. Thankfully, so far, Jackson and Lincoln will eat anything that resembles food, so it's been easy. Hopefully Taylor will follow suit! So far, she likes the meals she gets! LOL
Lincoln and Jackson had there CF check up about a month ago. Thankfully, it was while my mom was here and she was able to help me at the Dr.'s. That was a rough day! I've taken them both before by myself, but this time, they were both antsy and a bit hyper. I had forgotten to grab a stroller, so one of us had to hold Lincoln (all 27 lbs. of him!) and he would get squirmy, and fussy. Jackson was just getting into everything and not listening to me. Usually he does pretty well in that area...usually! But, he seemed to know that I was distracted, trying to listen to the doctors, and took advantage of that. From now on, they will have separate appt.'s...on different days! We have to drive to Orlando for the appt.'s, so I kept their appt.'s together for the sake of saving money on gas, but now that Taylor will need to go every 6 weeks (as they do in their first year), I can alternate the boys on her days. The boys go once every 3 months now.
But, the good news is that both boys got a good report from the pulmonologist and dietitian! They also see a social worker, (who we love!) and the CF nurse coordinator. It's usually about 1 1/2-2 hours from start to finish. Sometimes there is blood work or x-rays to be done too.
In fact...that reminds me...(BTW...I'm shocked that I have time to keep writing. Taylor and Lincoln are napping. Carter's at Pre-K and Jackson is playing nicely in his room!)...at Taylor's first appt. in Orlando, they had us do some blood work. I took her to the lab and there were two tech's there. One drew the blood while the other held and switched the viles that collect the blood. They had me hold her in my lap and steady her arm for them. I've been through it a dozen times with my other boys, so it was no big deal. But, they were having trouble getting all the blood they needed and by the time they decided they have to try again, some of the blood they had gotten already clotted. SO...this time, they had the lady hold Taylor, the man drew the blood and I switched the viles for the blood...about 4 or 5 of them. WOW! I've never been asked to do THAT before! It was actually kind of cool and probably better because when I was just watching them do it, I felt myself get a little woozy (sp?). I have been known to faint before when I was having blood drawn and I knew I wasn't getting to that point, but I did make a point to look away and think about other things. However, when I was the one collecting the blood, it didn't phase me a bit! I guess I was more focused on doing it right (as I didn't know what I was doing-though I've seen it done a hundred times!) and so I didn't get lightheaded or woozy (still not sure of the sp!).
I have said for a few years now that by the time my kids graduate high school, I'll have earned my own medical degree! Well, I have phlebotomy 101 down! Haha!!!

Monday, February 11, 2008

She's here!

Taylor Renee arrived on Sunday, February 3rd at 10:30am. One day before Mommy's birthday! Best birthday present EVER!!!
I started having contractions Sat. night before I went to bed, but figured they were more of the "Braxton Hicks" contractions that get your body ready for the real thing. I figured they'd go away with sleep. But, contractions kept me awake much of the night and by morning (4am) they were coming pretty regularly. I kept trying to get in some sleep, but by 5am, decided to get up and keep track of them. They were anywhere from 3-7 minutes apart. I woke Greg up to let him know...he wanted to go back to sleep! We got the boys ready (I hadn't packed their bags yet, but I had done mine the week before!). We called around and found a place for the boys to go, stopped for some water/coffee and headed to the hospital. We got there between 7-7:30am and was admitted by 8am, 6cm dialated! The Dr. came in around 9:50am to break my water and she was born 40 minutes later. No epidural! (But, I did have some pain meds).
It's nice having a girl. I never realized how much I liked pink!!
Please keep Taylor in your prayers. We don't have an official diagnosis yet, but all signs are showing that she has CF. I'd like to think I'm wrong, but we've been through this twice already and at this point, if her test results come back negative, I believe it will be due to a miraculous healing by God Almighty!

"Who Am I?" Awesome Video

Before playing this video, please scroll down to the bottom of the page and pause or silence my music player. Enjoy! This is awesome!!!

Music