Walker Boys and a Girl!

Nutrition, nutrition, nutrition

2010-09-14T11:10:00.008-04:00

We've all heard it. Most of us believe it. Many of us do nothing about it. Nutrition is KEY to a happy, healthy life.

I know in my head that good nutrition can literally change lives. I've heard stories, read books (well, parts of the books...I don't like to read), about people who have literally controlled their disease with a healthy lifestyle, mainly good nutrition.

I know that people who eat healthy, generally have more energy and are usually at an ideal weight. But for some reason, putting that into practice has been difficult for me. It does not help matters that my kids with CF need a high calorie and sometimes high fat diet. This does not mean a non-nutritional diet, but sometimes that can be difficult to blend.

Supplements are a great way to get some of the nutrition we are lacking, but it's also important to have GOOD, QUALITY, supplements. If you browse the shelves at a near-by drug store, you will see 100's of options. Is one just as good as another? Of course not. Nothing ever is, right? Most people agree with the popular saying, "You get what you pay for." But, buying the most expensive supplement does not ensure quality. So what does? What things would you look for in a supplement to know that it is what your body needs?

Did you know that many supplements are made from petrochemicals? That means it is a chemical derived from petroleum or natural gas. How does that make you feel? They are also much less effective than a "natural" vitamin.

A whole-food supplement, that is made from REAL food is key.

I have been giving my kids supplements made with "Real Food Technology", for a few years now, and I have seen it make a difference in their overall health. I have not been consistent with myself. However, I am going to change that. Today.

I'm still here!

2010-08-16T21:30:00.002-04:00

Where have you all been?

Oh.

You were here...and I wasn't? Hmm. I see.

Well, I have a good reason. At least it seems like a good one to me.

Since my last post (which was just before closing on our new home), I have had a crazy schedule. I really mean it. Crazy! Of course, I've had time to stop and breathe a little...and there's always time for facebook, somehow.

I can sense your interest in knowing how crazy my schedule was, since the last post (which was just before closing on our new home). I'd be happy to share with you!

It all started on December 17, 2009, when we closed on our new home (the day after my last post)!

Dec. 17-19 MOVING

Dec. 20--> UNPACKING (There's no end date, because there are still boxes in the garage) :P

Dec. 23 realize Jackson is getting pretty sick.

Dec. 24 Church Christmas Eve Service

Dec. 25 CHRISTMAS IN OUR NEW HOME!

Dec. 26 Took Jackson to Dr. Determined to have ear infection. Treated with antibiotics.

Dec. 27 realize Lincoln and Taylor are getting sick too.

Dec. 28 Took Lincoln and Taylor to Dr. Determined to have H1N1 Virus. Treated with antibiotics.

Dec. 31 Church New Years' Eve service (Kids and I had to stay home due to virus).

Jan. 4 Took Lincoln and Taylor back to Dr. due to shortness of breath and bad cough. Oxygen levels are low and we are sent to Arnold Palmer Hospital. Pneumonia.

Jan. 4-9 Lincoln, Taylor and I spent the week in the hospital. At home, it was the first week back to school for Carter and Jackson. Greg held down the fort. Pretty sure Jackson missed the entire week of school. :)

Jan. 10-20 (?) Mother-in-law comes to stay to help with kids while they finish recovery from pneumonia and to give me time to get back to unpacking and organizing our new home!

Jan 14 The start of having teen girls over 2-3 times a week for Bible Study, just time to chat, talk about life, or for help with the kids while I get stuff done at the house or for church.

Jan 23 Sunday School class Dinner

Jan 30 Two cakes (which means I pulled an all-nighter on the 29th!)

Feb 3 Taylor's 2nd birthday!

Feb 4 My birthday!

Feb 6 Cake order and Taylor's birthday party

Feb 16 Start babysitting 1 yr. old girl

Feb 17 Mom flies in!

Feb 19 Cake

Feb 20 Cake

Feb 23 Two kids to the Dr. (regular check up)

Feb 26 The other two kids to the Dr. (regular check up)

Feb 27 Combined birthday party for all 3 boys...since they never had a party due to moving (Nov/Dec)

Mar 1 Mom flies home.

Mar 5 Ladies' scrapbooking night at church

Mar 6 Youth Activity: Dew & Dodgeball

Mar 10 Cake

Mar 13 am Youth Car Wash (I stayed home but had other youth worker's kids over so they could help in car wash)

Mar 13 pm Assist at birthday party, putting a scrapbook together as guests arrive.

Mar 14-17 Mission's week at church

Mar 14 Cake

Apr 2 Sr. High leaders' dinner & mtg. at our home

Apr 5-6 Take friends' 3 kids while she is in hospital

Apr 10 Awana Grand Prix; Take Doc to Vet

Apr 16 Cake & Baby Shower; Youth Babysitting night

Apr 18 LIT (Youth) mtg. at our home

Apr 21 Cake

Apr 23-24 Acquire the Fire (Youth event)

Apr 29 Cake

Apr 30 Scrapbook night at church

May 1 Great Strides (CF walk)

May 2 Teen Drama at church

May 4 Go to teen's play at school

May 6 Jr. High leaders' dinner & mtg. at our home

May 8 Cake

May 14 Homeschool Graduation Ceremony, Young Marrieds' SS class get-together.

May 15 Youth get-together

May 16 Cake

May 17 Pastoral Staff & families dinner at our home

May 19 Lunch with friends!

May 28 Cake

Jun 1 Car shopping (!!!)

Jun 2 Back to dealership to finalize paperwork and get van detailed

Jun 5 Graduation cake for 5 seniors from youth group; Graduation party

Jun 7 School awards (Carter)

Jun 8 VPK closing program (Jackson)

Jun 9 LAST DAY OF SCHOOL!!!

Jun 11 Cake

Jun 11-15 You vs. Wild. Teen trip to GA.

Jun 18 Cake

Jun 19-28 Trip to PA/NJ (Driving our new mini-van!)

During trip: VBS, Crayola Factory, Walker family get-together, memorial service and Schlundt family reunion in NJ.

Jun 30 CF Clinic in Orlando and 9th anniversary!

Jul 12-16 CEF 5-day club at our home

Jul 19 Set up for Teen Extreme

Jul 20-22 Teen Extreme

Jul 23 Take Teen Extreme kids to Busch Gardens

Jul 26-Aug 2 Prepare for VBS

Aug 2-6 VBS

Aug 7 Cake

Aug 8 VBS Closing Program

Aug 13 Cake

Aug 16 Lunch with Jackson!!!

And here we are. :)

I know. Everyone has a busy life. I know there are many even busier than me. For my personality...melancholy mostly with a little phlegmatic...this kind of schedule can be overwhelming. Throw into this, weekly Praise Team practice, Ladies' ensemble practice, choir practice, Wed. night youth group, Sunday Night Alive (teen church), 3 kids on daily nebulizer treatments and cpt....it gets a little crazy sometimes.

So...there's my excuse for not posting since Dec. 16th. :) Aren't you glad you asked?

Oh.

You didn't ask? Well, I'm sorry then. Forgive me.

I remember the nurse practitioner, who first informed me of Jackson's diagnosis of Cystic Fibrosis, telling me that life, as I knew it, would change drastically. Hmmm...I'm not so sure. It certainly hasn't slowed us down. Not yet anyway.

I guess my house suffers the most...but we are slowing making progress there. I feel like we are still settling into our new home. As we go, we get a little more organized month by month. We have set backs, for sure, especially when we have full weeks of activities. BUT... it eventually comes back together. Just call before you stop by. ;)

We are closing on Thursday!!!

2009-12-15T15:16:00.003-04:00

All of the paperwork is finally processed and we are closing on Thursday!!! FINALLY...A REAL HOME!

Thank you, Lord, for your blessings!

Getting closer!

2009-11-06T21:22:00.002-04:00

House Photo Update

2009-10-20T13:12:00.002-04:00

House in progress!

2009-10-12T23:11:00.001-04:00

There is actually a lot more done now, but I don't have access to those pics at the moment. But, it's coming a long!!! :)

We've been approved and we have footers!

2009-09-15T18:34:00.003-04:00

We finally heard back from the lender!!! WE HAVE BEEN APPROVED!!! We actually found out almost 2 wks. ago, but life has been CRAZY here lately with the school schedules and new fall programs at church, that I had forgotten to get on here and update.

I'm still amazed that we are going to be in a house that is so perfect for us. I know God likes to do these types of things for His people...but I guess it's easier for me to believe that for other people than for myself.

Last week, the builder was working on pulling all the permits needed for the house. Today...they poured the footers! We just got the phone call that it was done, so I was not able to get pictures. But, I will drive by tomorrow and get pictures. I actually had thought about driving over today even before I knew they had done anything, but I had been out running errands ALL day and just wanted to be home. Figures!

They are working hard to get this house done before the end of Nov. So, if all goes well, I can expect to be in AND settled by Christmas...which is SO wonderful! What a great time of year to be in a new home...as close to a dream home as we can afford and everything we need and then some. THANK YOU GOD!!!! SINCERELY!

House shopping again!

2009-08-04T14:04:00.004-04:00

Well...we've been here before...but this time, we think we will be buying a house. It's not finalized yet, so I say that with some hesitation. In fact, I'd rather not tell people that we are house shopping again in case it doesn't work out. BUT...I'd like as many people praying about it as are willing, so here it is...

We found a 5 bedroom house that I fell in love with. I would never have thought we could afford a 5 bedroom house, but, because we would be going through a developer, we are able to get a better rate and the monthly payment will be lower than what we would pay for a cheaper re-sale house. Amazing! A brand new house....cheaper than a used one. It will be clean...no need for repairs...under warranty...AWESOME!

If this house IS what God has for us, we can see how He has worked it out in His time...which we can see is the right time and how waiting has made it so that we can get a house large enough for our family. Everytime we thought we were ready to buy a house and God said, "No", the next house we considered was better, (nicer, bigger, more house for the money, location, etc.), so we also know that if this is NOT the house God has for us, that He does have something out there and that it will meet our needs, in every way.

But, I will admit, if it's not this house, I will be very sad. :) I like everything about this house! And, through an incentive program the developer has offered, we are able to put in some upgrades, at no cost to us. These upgrades will include some things that are important to me, for the health of our kids. For instance, instead of the included carpet that comes in the bedrooms, we'll be putting down vinyl (can't afford to upgrade to real wood!), in each of the kids' rooms, the family room and the dining room. Carpet, for kids with CF can be harmful because it holds onto bacteria and it's difficult (or impossible) to get rid of. And, since Carter is allergic to dustmites, carpet isn't good for him either. The house has 3 full bathrooms! The kitchen is just right and there is enough counter space for my cakes!!! It also has a walk-in pantry! One of Greg's and my favorite things is the LARGE walk-in closet off the master bathroom. Clothes are our enemy where we live now. It's not that we have an unusal abundance of clothes, it's that we have a severe lack of closet space and only so much room for dressers. LOL The laundry room is upstairs next to most of the bedrooms (the 5th bedroom is downstairs and for now, will be a guest room/office, until the kids are older, and then they can each have their OWN room!!!). The house will have to be built, and should take 4 months. This would get us in the house in November...just in time for the tax credit...and maybe better yet...just in time for Christmas!!!!!!!!!!!!!!!!!!!!!!!!!!!

So...there you go! Something to pray about. :) I'll keep you posted. We should hear something soon. I will say, the lender thinks it will go through, but there were a few things that had/have to be done, so we are waiting on those and time will tell! I don't like waiting. God knows this. But, makes me wait anyway...probably teaching me something. :) I'm trying to learn!!!

Surgery

2009-06-14T23:19:00.005-04:00

Probably anyone that actually stops in to read this (since I'm not good at keeping it up), already knows I had surgery yesterday. I have, apparently, inherited all of my medical genes from my Dad. :) So, like him, I had to have my gall bladder removed. It had been bothering me for quite some time, but the pain would come and go, so I put off getting it looked into. When you have small children, who see Dr.'s all the time, a week with no appointments is a lovely thing! So, I was in no hurry to fill those, what feels like, rare weeks. However, a few months ago, I'd had enough! I finally saw a GI specialist to see why I was having so much pain in my upper, right abdomen. After running a few tests, we found, through a HIDA scan, that my gall bladder was inflamed and not working properly. With these results, he referred me to a surgeon. I was kind of surprised that that was the next step, but I went to the consultation open-minded. I was hoping to hear that he thought there were things I could do to help heal my gall bladder before we approached the idea of surgery, but he was pretty to the point that it needed to come out. He didn't know yet if there were stones. So, he ordered an ultrasound. The ultrasound showed several small stones. But...I didn't know. The nurse who called to schedule my surgery couldn't tell me the results because the Dr. had not yet reviewed them. I understand the concept...but seriously! Several weeks went by, and I had kind of forgotten about it because I wasn't in pain and I had a lot going on. When she had called to schedule the surgery, I didn't make a decision because I knew some things were coming up that would interfere with the surgery...or I guess I should say the surgery would interfere with them...but I needed to find out from Greg what he needed from me with a Sr. High trip he is planning. So, anyway, I was put off calling them back because I was hoping to put off the surgery 'til early July.

Well, Thursday (June 4th), I started to feel pain again. Usually, the pain would last a few hours to maybe a day at the most. But, Saturday came and I was still in pain. I went to Urgent Care and they gave me pain meds and suggested I call the surgeon on Monday. The pain meds helped, but didn't take care of it. I put a call into the Dr. thinking there was a possibility of having surgery that day (I don't know why I thought that!). It took several hours before I heard back from the office. They gave me the option of having it that Wednesday or waiting until the next week. I kind of wanted to have it that Wed., BUT...it was our week of VBS and I am the Director. So, I thought, since they didn't seem to feel it was urgent, that I could put it off...(okay, I see the error in my thinking now).

My plan to put off surgery so that I wouldn't miss VBS backfired. By Tuesday, I was in greater pain. The pain meds weren't touching it! I wasn't even able to do VBS that night. I would have done it with the pain, but my job is to get the kids pumped in the beginning and then lead them in the songs and basically MC the opening and closing, but I wasn't able to yell or sing...the pain was too intense. So, I stayed home and other people stepped up to fill my spot. (Which is awesome!)

By Thursday morning, around 6:00am, I decided it was enough. I let Greg and the boys continue to sleep, and I drove myself to the ER (I did tell Greg where I was going). They kept me there for about 6 hours...the pain meds were WONDERFUL! The ER Doc was in touch with my surgeon and they were sort of on the fence as to whether they should admit me or send me home with stronger pain meds (than the ones I received at Urgent Care). The concern here is that they don't like to do the surgery while the gall bladder is inflamed, or if it's infected (which they didn't know if it was or not), because there is risk of it bursting or them not being able to do the surgery laparoscopicly (just 4 "holes/incisions" in the abdomen), and having to do it the "old fashioned" way and making a large incision and requiring a much longer recovery period. So, the goal was, go home, on a liquid diet (I hadn't really eaten anything since Monday, anyway, just a few bites here and there), and try to let the gall bladder "cool down" and be ready for surgery on Tuesday. The ER doc said that if the pain got worse, or if other symptoms appeared (fever, vomiting, etc), to come back.

By Friday AM, the pain was at least as strong as it was the day before and the pain meds weren't cutting it! I was also getting concerned about dehydration because I wasn't eating and I was hardly drinking since I was trying to sleep so much, so I didn't feel the pain. Greg wasn't home, but he did have the 2 older boys with him (a friend from church had the 2 younger ones from Wed-Fri! Bless her heart!!!). I called Greg and told him that I was pretty sure I needed to go back to the ER. So, he came home and made arrangements for the boys and took me in. This time, though this ER doc seemed to think I could have managed the pain at home by just taking more of my prescribed medicine (but acknowledged that I took it according to how it was prescribed), the surgeon told him to admit me. THANK YOU!

Once again, I was thankful for the hospital pain meds. They were the only thing that decreased the pain and also allowed me to get some sleep. And, I was glad to have the saline IV around the clock, putting fluids back into my system with little to no effort on my part (just had to keep my arm straight because they put the port in the bend of my arm and sometimes the slightest movement would cause the machine to stop).

They put me on the schedule for Saturday at 2:00.

From the time they got me to the OR, it was supposed to be about a 2-hour procedure, but Greg said it took about 4 hours. Some of that was recovery time, but I think that was also calculated in the 2 hours it was supposed to be.

When I saw the Dr. this morning (Sunday, June 14th), he said my gall bladder was "a wreck" and he wished they had kept me the first time I came into the ER. Oh well...who knew! It was inflamed and infected and hardened from being that way for so long. He acknowledged that I must have been in a lot of pain and for a long time. (I tried to tell them!)

I did have some people suggest I try a natural cleanse or "flush" before letting them take my gall bladder...and though I think they have a very good argument, I truly believe that my gall bladder was beyond repair. The pain was so intense and lasted 10 days, until they took it out, with no relief in sight. I think I was at a greater risk of it bursting and infection spreading through my whole body, than the possibility of "healing" it on my own.

So, anyway...I'm glad it's behind me. Now...recovery. It shouldn't be too bad...but it will take a few days, I'm sure! Greg's mom is coming Tuesday and will spend a week with us. Then Carter and Jackson will fly back with her and stay in PA/NY for a few weeks, spending time with both of our parents and visiting their cousins! They love that! This will allow me a little more recovery time and what will probably turn into some spring cleaning once I feel like myself again. Greg will be flying up to NY for a few days anyway, so they will fly back with him.

Thanks for all the prayers and concern. I definitely wouldn't choose surgery just for this reason...but it's nice to be reminded how loved my family is! We are blessed and humbled by it all. Consider yourself hugged!

May...is going away...fast!

2009-05-19T00:37:00.002-04:00

For whatever reason, April seemed to drag on, yet May seems to be slipping through my fingers. It has been a busy month...but I think all months are busy, really!

School is winding down, which Carter is happy about! He likes that he's learned a lot at school. He loves to read signs and words wherever he can find them, but he doesn't like going to school. I think the hardest part for him, is just the waking up and getting out the door. Then he does fine. Poor guy...I know how he feels. I was that way too. I don't remember it starting in Kindergarten though...but perhaps.

I'm pretty excited about the 3 cake orders I have for graduations. They are all for teens in our youth group and I'm happy to be a part of their celebration. They are all good guys and I'm confident they will each serve the Lord in whatever it is they do in life. At least two of them have plans for full-time ministry! Yeah! Each of them have a good understanding of their faith and what it means to them.

Speaking of graduations...we have 11 graduating seniors this year. That's a big group! Many of them are faithful to our youth ministry and it will be strange when they head off for college and other things. We will miss them.

We are also gearing up for our VBS! We are using Group Publishing's "Crocodile Dock" and expect to have a lot of fun with it! The setting is down by the bayou...a swamp atmosphere. Greg will be our resident hillbilly! The kids will love it, I'm sure. It's scheduled for the 2nd week of June. And, there is still a lot to be done to get ready. But, it always comes together. Prayers are welcome!!!

The kids are doing well...so much fun! Taylor has been having trouble with ear infections. She's currently on anti-biotics and it seems to be working well. However, she has a lot of drainage in her throat causing her to cough a nasty cough! But, the Dr. says she sounds good and her ear infection looks like it has cleared up (but we'll finish the meds!). She is 15 mos. old now and at such a fun stage. She's always happy and loves to imitate everything. Jackson loves to try to get her to say new words. He did this with Lincoln too and Lincoln talks very well for his age, so I guess Jackson is a good teacher! :)

Lincoln is just a joy! He's funny...smart...loving...etc. :) He knows his ABC's...not just to say them, but he recognizes them. He learned them just about the time he was turning 2 yrs. old, but it still blows my mind sometimes when he picks out letters randomly. I know he's not the only 2 yr. old to have accomplished this, but he's MY only 2 yr. old to do it, so far!

Jackson...is still giving us a run for our money. But, I will say, he has calmed down a lot and is doing better. He's full of fire and with good (prayerful) guidance, it will serve him well, I'm sure! But, you can NOT let your guard down with him. He'll win! With that said, he is one of the sweetest kids I know...when he's being sweet. He'll start pre-school this August and I really think that will be good for him. It's just for 3 hours a day and it will give him a structured environment where he can be busy the entire time! I think he'll thrive in it!

Carter, as I said earlier, is about to finish Kindergarten. He told me the other day, out-of-the-blue, that he wants me to home-school him next year. This surprised me, because, even though I've talked about it with Greg, I never discussed it with Carter. Turns out, he had discussed it with a teenage girl in our youth group, who is homeschooled. :) I asked him why and his answer had something to do with the fact that he could be home and play all day and not go to school. Hmmmm.....I don't think that's what homeschooling is all about! We plan on sending him to public school again next year, but homeschooling is not off the table completely...something I thought I'd NEVER hear myself say!

I guess that's about all I have to say for now. I should be in bed...so I'll head there now. Have a great day!

Cake Fun!

2009-03-31T12:08:00.003-04:00

I have decided to try and make a business out of making cakes. We'll see how it goes.

Check this out sometime...

www.cakefunbyleah.com

Have a good day!

Quick Update

2009-02-24T19:33:00.002-04:00

Hello...yes, it's been awhile. I started to post once in January and something happened and I lost what I had written. I didn't have the energy to start over. :) So, now, a month later...I'll try again, but this will be brief because I'm about to head out the door to take Carter to his LAST basketball practice (for the year!).

Taylor had a follow-up check up today after her Bronchial infection 3 weeks ago. The Dr. said her lungs sound great! If it weren't for her runny nose (started Sat.), we'd have been able to cut out the albuterol treatments altogether, but he said to continue those (twice a day) through the weekend. We will continue all of her other meds, but after the weekend, she'll be down to one breathing treatment, 2 inhalers (well, one, twice a day) and her CPT (chest therapy) twice a day, plus, of course, her enzymes at each meal.

Carter was sick last week, enough to keep out of school for 3 days. He came home from school Tuesday and within a few hours had a high fever and vomited. FUN! His fever stayed between 100 and 103 for a couple days. Tylenol and Motrin seemed to keep it down some, but by the time it was time for his next dose, it was up again. But, it went away Thursday evening. Now he has a pretty congested sounding cough, but that's all. So...flu maybe? Who knows! My kids all get flu shots (for the CF kids sake), but it's still possible to get it...at least it may not be as bad though.

Lincoln also had a fever, but for only 24 hours. He decided to let me know he was sick by puking on me at 3:45 am IN BED! That's when I noticed the fever. This was Sunday AM...so once again...no church for us! (They're going to think I've stopped coming for good!)

Jackson...is not sick!!! Somehow, he's managed to stay well through all of this. Praise the Lord!

Greg and I are also well...so far. =)

I'll try to post again soon...TRY...being the key word!

Thank you to those who check in once and awhile to see how we're doing. If you're on facebook, you can keep up with me a little better!

2008-12-13T21:42:00.003-04:00

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!

Some Videos

2008-10-31T09:41:00.002-04:00

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

It's been a month?

2008-10-27T10:53:00.004-04:00

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!!!

James, Kristen & Ruby

2008-09-27T08:15:00.005-04:00

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

2008-09-22T13:53:00.002-04:00

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

2008-09-19T08:49:00.002-04:00

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

2008-09-13T23:49:00.002-04:00

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

2008-09-08T14:01:00.002-04:00

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!

2008-09-03T10:57:00.002-04:00

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!

Never a Dull Moment

2008-08-28T09:00:00.007-04:00

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!

2008-08-28T08:56:00.002-04:00

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.

Family Photo Shoot & Kindergarten & Health updates

2008-08-16T14:20:00.006-04:00

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!

Where do I start?

2008-08-06T18:37:00.002-04:00

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!

Sick

2008-06-29T14:22:00.003-04:00

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. :)

Good Results

2008-06-12T09:11:00.002-04:00

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!

Great Strides 2008

2008-04-19T14:08:00.002-04:00

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!

Great Strides

2008-04-18T11:39:00.002-04:00

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

2008-04-18T10:25:00.002-04:00

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.

Good Girl!

2008-04-08T16:44:00.003-04:00

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!

Pictures

2008-04-05T19:44:00.003-04:00

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!

It's been awhile

2008-04-01T11:24:00.002-04:00

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!!!

She's here!

2008-02-11T10:20:00.000-04:00

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!

IT'S A GIRL!!!

2007-10-04T16:01:00.000-04:00

IT'S A GIRL!!!

Lincoln's Baby Dedication Service

2007-09-09T22:10:00.001-04:00

Today was Lincoln's Baby Dedication Service. If you're interested in watching it, go to http://cbclakeland.com/cornerstone/sundaysermons.htm. Click on the 2nd "Watch" from the top, labled Sept. 9, 2007 AM. It starts out right near the beginning. If you keep watching for a few minutes after the dedication part ends, you'll see the song I sang for the dedication. I got choked up and didn't do well in the end (and was kinda shaky in the beginning), but it's a great song and has a great message for this kind of ceremony! Enjoy...and it's okay to laugh too. I did.

Baby 4 Doing well

2007-09-05T09:23:00.000-04:00

Yesterday was my check up for the baby. I heard the heart beat and everything seems fine so far! Next month, Oct. 4, we should find out if the baby is a boy or GIRL! :) As long as the baby cooperates, that is!
A girl would be nice to have for a change. LOL But, four boys could make life fun too!

Either way, names will be a struggle! What do people that have 8 kids do for names? Crazy!

Potty Trained at last!

2007-08-31T10:05:00.000-04:00

I think it's safe to say that Jackson is officially potty trained! He has been choosing to go to the "potty" on his own for a few days now! We've had several DRY diapers and underwear too! YEAH!!!! It will be nice to have this finished and behind us, since we still have Lincoln in diapers (he's not yet one, of course), and the baby due in Feb. will add to our diaper purchases as well!

Woohoo!!!!

I HATE BUGS!!!

2007-07-24T11:24:00.000-04:00

Monday PM:
OKAY...I OFFICIALLY HATE FLORIDA! HERE'S WHY:

Greg's not home and I just had to kill a HUGE spider myself. I'm ready to pack my bags and head for NY.
I first saw it in our bedroom while I was putting clothes away. I ran for the bug spray and sprayed him, but he moved so fast, that it didn't do anything to him. I lost him behind Greg's dresser and watched for a long time, but couldn't find him. I didn't want to see him again, but I wanted to know where he was. I gave up and went in to use our master bathroom and saw, what is hopefully the SAME spider, crawling along the mirrors by our tub. So, I got the spray again and had to use a broom handle to move some things away until it showed up again. I must have sprayed him 30 times before he finally dropped and slowed down. Eventually he stopped moving. This is the 2nd wolf spider in our bathroom within a few months. WHAT IS GOING ON????????????

Now I want to go to bed, but I'm afraid to.

Anyway...if I can get my heart to stop pounding, I think I'll be okay.

Tuesday AM:
Well, Greg says it wasn't a wolf spider, but actually a "Huntsmen" spider. They look a lot alike and are about the same size, so it caused the same chemical reaction in my brain, high blood pressure and nearly heart failure, BUT, I just thought I'd let you know the correct name for my friendly house guest (as Greg assures me they are harmless). Well, I would like to know the definition of harmless! I think a spider big enough to make your heart stop is not harmless, but what do I know?!? LOL
If you want to see the ugly thing, you can look it up online! haha And, when I say ugly, of course I mean a beautiful creation by the hand of God.

Caring Heart

2007-06-14T19:18:00.000-04:00

We just finished our VBS and once again, had a blast! We did Group's "Avalanche Ranch" and Greg was "Cowboy Cody" (a character we made up). The kids love watching him be goofy and do tricks.

One of the craft projects was to stuff two bears (for each child). One bear was for them to take home and one bear will be sent to an orphan in Africa. The idea is for the U.S. child to remember to pray for the African child everytime they see their bear. This will be handled through Group Publishing and Compassion International. I think it's a great way for the kids to get a picture of the world around them.

The other day, while taking Carter to the eye doctor, he asked about the bears. I told him that one of the bears he "made" would be sent to a child in Africa. He inquired, "Because they don't have a family?" I told him that was true. Then he asked why they didn't have a family. I explained that a lot of people in Africa get sick and then they die. He asked if kids got sick and died too. "Yes, sometimes," I replied. He said, "I wish I could go to Africa." I asked him why he wanted to go to Africa and then what he said just melted my heart. "Then we could be their family." I told him that I thought it was a very sweet idea and that I wished we could do that too. Then he began to plan...asking who could live in our house when we left and who would drive our van.

Isn't that sweet? I hope he never loses that heart for kids!

Jackson's CF Update

2007-06-08T15:23:00.000-04:00

Jackson is doing well overall. His weight is between 50% & 75%, which is great for a child with CF. His height seems to be taking more after Mommy than we would like, but it's okay.

Wednesday (the 6th), they did his annual tests, blood work and lung x-ray. I don't have the results of the blood work yet, which will check his vitamin levels, liver enzymes and more (that I don't even know, I'm sure). The x-rays show that there is mucous growth in his right lung. His lungs had been very clear up until now, so it was a bit discouraging. The Dr. said that it's not real bad, but because it is an increase, they want to begin treating it aggressively. So, added to his daily treatments will be Pulmozyme. It is not an anti-biotic, which I'm glad for. It is used to thin the mucous in his lungs and will have it's biggest benefit if used during his chest therapy (The VEST)-that will be a trick to get him to do both at once!

He's had the Vest for a few months now and he still resists it, though he's getting much better at it and can tolerate it for a longer period of time. The Pulmozyme will be put in his Nebulizer and so, he'll be doing a breathing treatment and the Vest together...with lots of prayer and muscle!

The Dr. also noticed a cold coming on and she was right. The next day he woke up with a cough and runny nose, so they have prescribed an anti-biotic that he will take for 14 days. I wish I didn't have to put him on it, but that's what will cause more mucous in his lungs, so we have to weigh out the pros and cons and do what they tell us!

The good news is that they can catch all of this so early that it can be treated immediately and not have time to get ahead of us so much that we can't maintain his health. I was recently on a website www.cysticfibrosis.com, which is not the same as www.cff.org published by the CF Foundation), and was reminded of how fortunate we are to be living today. Just in my parents' lifetime (1950's), kids with CF didn't live to attend Elementary school. I am so thankful that I live in a time when the average life span is up to about 38 years. Of course, we hope and pray that by the time Jackson is 38 (36 years from now) even more science and research will be done to make that age at least double!!!

OK, this tops them ALL! Warning: PG-13 for language

2007-04-18T00:42:00.000-04:00

OK, well, here's the thing...this is a true story. It starts out with some interesting, usually offensive language...however, when you get to the end, I guarantee it will make you laugh and you will see the innocence in it!

Today Greg took Carter and Jackson with him to the Bass Pro Shop, a favorite place of Greg's (since there is no Cabella's near by). While there, Carter called Greg a "fun f...er ". Greg was HORRIFIED and immediately called me to report the offense. When Greg asked him where he heard that, Carter said, "You". Again, horrified! Greg, of course, knew that was not where Carter heard it, but the fact that Carter said that was unnerving to say the least!
When they got home, Carter was sitting with me on the couch and Greg was again telling me the story of what happened. He tried to avoid saying words that would remind Carter of what he said, but Carter realized we were talking about him and looked at us like he knew something was wrong. I asked him if he was okay and he said, "I called Daddy a fun f...er ." It was so shocking to hear that I laughed out loud. Not wanting him to think it was funny, I quickly explained that it was a very bad word and that he shouldn't say it. I explained that God didn't like it and neither did Mommy or Daddy. I made sure he knew I was serious and explained that if he said it again, he would be in trouble.
He assured me he understood. Then he looked at his thumb and then up at me with a very confused look on his face and said, "So, my fun..." THEN IT HIT ME! He was trying to say, "THUMB SUCKER!" OH MY!!! WHAT A RELIEF!!! I don't think I've ever laughed so hard in my life!
Carter was also telling the truth when he said he heard it from Daddy. Just yesterday, I pointed out to Greg that Lincoln was sucking his thumb and Greg said, "So, is he going to be a thumb sucker now?" Whew! Our little 4-year old is still an "innocent" little boy!

Hope you enjoyed the laugh! I needed it!

I'll have a...

2007-04-15T17:10:00.000-04:00

Have you seen the Subway commercial where the couple is in a fast food drive-thru and he accurately orders his meal in "fat" terms, including supersized "blubber"? His wife orders the same, but instead of the blubber, requests some "thunder thighs" and a "badonkadonk butt". We all think it's a pretty funny commercial, including Carter.
Today, we were dining at the Golden Corral. I was ordering our drinks when Carter piped up and said, "I'll have a Fruit Punch and a Badonkadonk Butt." Oh my!

Carter needs glasses!

2007-04-05T09:35:00.000-04:00

In the past few months, we have noticed Carter's right eye drifting and looking cross-eyed (also known as "lazy eye"). We took him to a pediatric eye doctor and she prescribed glasses for him. We are hoping that the glasses will correct the cross eyes and that he will outgrow the need for glasses, but he may end up needing them forever.
The challenge will be getting a 4 yr. old to wear glasses ALL day! He looks pretty cute though, don't ya' think? =)

Funny stories by Carter

2007-03-31T13:47:00.000-04:00

This is a story about Carter. He comes up with some of the funniest (sometimes embarrassing) things. I will post these stories from time to time. Enjoy!

One day recently, Carter voluntarily laid down to "nap" in the playroom (because Jackson was napping at the time). He was being pretty quite so I went to peek in and he was playing with toys. I didn't mind because I had not told him to take a nap. About 10 minutes later he came out and said, "I just took a short nap." I said, "No, you didn't. I saw you playing." He said, "Okay, let's try that again." Then on his way back to the room, he turned and said, "Mom, don't try to see me playing."

Jackson's latest CF check up was good news!

2007-03-29T12:48:00.000-04:00

Jackson is doing very well. He is about 65%, weight for age, on the growth chart, and 95% weight for height. That's amazing for a CF patient.
He has not had any major illnesses and even managed to avoid catching Carter's pink eye and bronchitis. He has not needed his TOBI meds since last June. This is an anti-biotic taken through a nebulizer to put medicine into his lungs. It is very common in CF patients and many have to take it regularly (28 days on, 28 days off, 28 days on completes a cycle). He has only ever had to use the TOBI meds twice and each time, only for the first 28 days. That means that his lungs are very healthy and able to fight infection.
He's two years old now and seems to have grown up overnight recently. He's still a handful and keeps us going...non-stop! But, he's a lot of fun and a cutie!!!
Thanks for your prayers!

Cystic Fibrosis

2007-03-29T11:17:00.000-04:00

What is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

very salty-tasting skin;
persistent coughing, at times with phlegm;
frequent lung infections;
wheezing or shortness of breath; and
poor growth/weight gain in spite of a good appetite

Statistics

About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 80% of patients are diagnosed by the age of three.
At least 40% of the CF patient population is age 18 or older.
In 2005, the median age of survival was nearly 37 years.

For more information on CF, go to www.cff.org (Cystic Fibrosis Foundation).