Our 2015 CF Commercial that plays on MCTV

Wednesday, July 29, 2009

Update & Video of Him Playing in the Backyard

I just wanted to let you all know that Lil' Chris is all better and has been for the last couple of days...thank God!! I still never heard from the dr.'s office about the test results:( I guess it was nothing serious!

Here is a video my hubby took before Lil' Chris got sick. He loves playing with his swing set!! We have such awesome neighbors to give it to us!! I didn't put music on this video, b/c he talks in it and laughs a lot so turn up your volume if you want to hear him...I just LOVE his laugh!!!!!!!


Hope you enjoyed it as much as I did;-)

M

Monday, July 27, 2009

CF Poem & Tips & Tricks Post from Casey

I found ANOTHER new CF blogger buddy through Ronnie and Casey...thanks guys:)
Her name is Alexandria and she is an adult CFer. Click here to check out her blog and show her some bloggy love by leaving her an encouraging comment:)

She had this awesome CF poem on her blog that I thought I would share with you all...

CF is a game...A game in which there are definite winners and definite losers.
The losers scoff at regular treatments, hospitalizations, and medications
They, in turn, receive the assurance of sickness, illness, even death.
Their counterparts, the winners, take their medications, inhalations, and exercise.
These are the participants whose eyes are so fixed on doing what it takes to win and feel good, they don't mind the daily routine.
All because they long to control their CF, instead of letting it control them.
Living to fight,Instead of fighting to live.
This is their mantra.
The game is CF
The goal is to win
The reward is life
LET'S PLAY !!!

I hope you enjoyed it as much as I did:)

Casey had a REALLY good post on his blog today that I wanted to share with you all too. I love learning new tips and tricks:) Thanks Casey!! Click here to read some great advice for not only adult CFers, but for CF moms like myself too;-)

Ronnie also had a great post today too about supplements for CFers and stresses how important it is to do treatments and exercise! Click here to read it!

I gotta be honest...learning tips and tricks to help better my son's life is such a high for me!! =)
M
PS. There still is time to donate to our Great Strides to help find a CURE for CF!! Click here to donate today! My personal goal is to raise $5,000 by the end of the summer. So far we are almost to $4,000!! Praise God!! Thanks again to all those who have already donated!! We love you:)

Sunday, July 26, 2009

YEA! NO MORE FEVER!

His fever managed to stay away the past 24 hours YEA!! He is acting like his good ol' self now:) He is wanting to eat more now too, THANK GOD!! I think he is making up for not eating much the last 2 days:) Looks like I'm going to have to do some shopping;-)

The only thing now is that he sounds different! It sounds like he's got a stuffy nose, but he doesn't! His nose isn't running and nothing came out when I suctioned it! IDK what it is, but I can definitely hear it in his voice and when he breathes. It must be dripping down his throat or something. It's like he can't breathe if he closes his mouth! Poor lil' guy, if it's not one thing it's another : ( I just hope that he is not starting to get any sinus issues like CFers tend to get.

Thank you to all for all your great advice and help the last couple of days:) Thank you also for all the prayers. We greatly appreciate them:)
M

Saturday, July 25, 2009

Quick Fever Update

He took a very long nap this afternoon and when he woke up he felt much better! His fever FINALLY broke!! His temp was 98.2! YEA!! He still did not want to eat much, but he DID want to drink his milk though:) He was very cranky, but I was able to get him to do his Vest tonight:) YEA! We stopped the Augmentin, but he is still having those foul smelling diapers:( It'll probably take a couple of days. I know that one of the symptoms of CF is foul smelling diapers, but until now Lil' Chris never had that! Weird!

I'll keep you posted,
M

New Blogger Buddy: Casey

Hello All! I just came across a new blog buddy thanks to Ronnie:) His name is Casey and he is 18 with CF. His blog is called aCASEYofCF....very clever I thought=) He has some really cool info on there that amazes me! You gotta watch his video on the left side of his blog(you have to scroll down a little). It's called "What makes me cough". He has some good exercises that he does to help him cough out the mucus. Lil' Chris isn't to the point yet where he coughs the mucus out, but this video helped me to teach him some tricks for when he is ready:) Thanks Casey and thanks Ronnie for introducing me to Casey!! =)

To check out their blogs, just click on Ronnie's name above and click on the name of Casey's blog above. Let's show some bloggy love to Casey:) I have a feeling we can all learn a lot from him:)
M
PS. You should check out Ronnie's blog too, he has some pretty cool videos on there...good stuff:) Please pray for him as he is in the hospital.

No C-diff!!! YEA!!!

HOORAY!! Lil' Chris does NOT have C-diff!!! We still aren't sure what's causing this fever that he STILL has though;( We will get the rest of the test results on Monday hopefully. I'll let you know when I find out. Hopefully it's nothing else that could be serious, and hopefully this fever goes away real soon!

He had a fever all through the night and still has it. It was 100, so it has come down some. We are still giving him Tylenol. He DID eat a little bit this morning, so that's a good sign:) He is drinking, so we are not too worried about dehydration at this point. I'll keep you updated. Do you think it's wrong that we aren't doing his Vest? It's not a respiratory problem where he NEEDS the Vest, so I think it's ok for now until we find out what's going on or until I think he can handle it.

Thank you to Mary for reminding me where I have heard of C-diff before:) Now I remember Alma telling us what a hard time Jack had with it TWICE and how he was hospitalized for a while! I'm so glad now that Lil' Chris' test came back negative and he doesn't have C-diff. Huge relief! But now I worry it might me something else, like what? IDK. I don't think he could have picked up a virus anywhere! We didn't take him anywhere except outside to play in our yard!! I just pray that whatever it is, it's not bad and he can recover from it quickly.
M

Friday, July 24, 2009

Back from the Pediatricians/No more Fever! Yea!

He fell asleep on the couch watching TV. We unfortunately had to wake him up to take him to the dr.s :(


We are back from the Pediatrician and Lil' Chris is doing better, but still not himself:(

The dr. said to stop the Augmentin, b/c she wants to check a stool sample for C-diff. Apparently you can get C-diff from antibiotics. Even though he has taken Augmentin many times before, she said it can happen at any time. I'm not exactly sure what C-diff is, so I may have to do some research on it. Does anyone have any experience with C-diff? The dr. said that if he does have it, then he will be more likely to catch it more often when he is on antibiotics. Our reaction..."Oh great! He is always on antibiotics!" Ughhhhh

She said his weight was 28 lbs and in the 50th percentile. According to her charts, his weight looks fine, not the best, but ok. They did not check his height. The nurse said his temperature was gone, so that was a relief!! After the Tylenol, the cat nap, and the 40 minute wait in the waiting room, he felt much cooler! THANK GOD!! Don't worry, Lil' Chris didn't wait in the waiting room, just Ayla and I. Chris was keeping him occupied out in the hallway so he wouldn't catch anymore germs. We always do that whether at the CF clinic or the Pediatricians :)

She said to give him plenty of fluids until we get the results back which will most likely be the beginning of next week unfortunately. I hope the clinic doesn't get mad that we stopped the Augmentin. Our CF dr. wanted him to keep taking it. I tried calling them when I got home, but it was too late and they were closed.
Hopefully he doesn't have anything serious. I'll let you know the results when I get them. Please say a prayer that he will start eating and drinking and get his energy back.
M
PS. We got his throat culture results back...he cultured Staphylococcus areus sensitive to Oxycillin (MSSA). He has grown this bacteria before and it requires no changes to his treatment.

Fever of 102.2!!!

Please pray for Lil' Chris. He woke up this morning with a 102.2 fever. His whole body is just burning up! He drank a little bit of water, but won't drink anymore. He is real sleepy and not wanting to play or anything. He just wants watch TV or be held. Poor lil' guy, I feel so bad for him. First all these nasty foul smelling diapers multiple times a day, then a diaper rash, and now a fever!! We still think that it is the refill that we got for his Augmentin. It must have been a bad batch like Katey said. I guess this sometimes happen, unfortunately:( Stupid Drug Mart! I don't think we will be going back there if that really is the reason for all of this!!!

I called the CF clinic immediately and asked to speak to a CF nurse. They put me through to voicemail, so I called back and said "Can you please have a CF nurse paged!" Then she knew that I was serious and got someone for me to talk to:) I talked to the nurse and then she called me back after talking to our dr. He said to go to our Pediatrician to see if he picked up a virus or something, but to still continue the Augmentin. I said "Are you sure?" She said that's what he said, so I called our Pediatrician and made an appointment for 2:30. She said if it gets worse before then to go to the ER.

Thankfully my wonderful hubby came home from work early so we could take him to the dr.'s and also to pick up some Tylenol since ours was expired. This is only his second fever and the first one was a reaction to a shot he got when he was just a month old. Hopefully the Tylenol works. Charmaine suggested sponging him down with tempid water too, so I may try that too. Thanks Charmaine for always being there for me right when I need you the most;-)

Tuesday, July 21, 2009

Lil' Chris Update & Susanna's Update

Thank you to all who helped me out with my last post about how to count calories for CF! I really appreciate all the quick responses:) I think I might start a list of all the good high calorie food ideas so all CFers can benefit from it:) I'd like to make another column on my blog on the left side, but I'm afraid to change anything. The last time I tried to change my blog layout to look cool like everyone else's, I lost my whole friend blog list. I'm still missing some I think! How do you all do it? My blog is so boring, but I'm afraid of messing anything up :(

Lil' Chris is STILL having some nasty smelly diapers like 3-4 times a day!! This NEVER happens!! We thought maybe it was trying all the different supplement drinks, but I don't think it's that. We think it might be the new Augmentin refill. It seems like ever since we got the refill this has been happening. Isn't that weird?? We got it filled the first time at the CF clinic, but we got the refill at Drug Mart. Along with the dirty diapers came a diaper rash unfortunately :( His poor lil' bottom. I feel so bad for him;(

Ayla has started grabbing my hair and putting it in her mouth. Why? IDK! Every time I pick her up she goes right for the hair! I'm debating on cutting it short or just wear it in a pony tail all the time. Another thing she has been doing ...turning to see what's behind her when we are changing her diaper! What a pain! I remember when Lil' Chris started doing that! It makes it very interesting to put a diaper on when she is all twisted to look behind her;)

Our visit with Sally from BCMH(Bureau for Children with Medical Handicaps, our secondary insurance state program) went GREAT!! She is such a nice lady!! She helps us out with whatever we need! She said that BCMH will cover having a nutritionist come to our house like once a month to give us some tips and stuff! I love BCMH!!! I honestly don't know how CFers go with out some kind of help. I asked her if there is some kind of BCMH in other states and she said that EVERY state has some form of it!! I was SO excited to hear this!! I guess we won't be stuck in OH forever after all ;-) lol She gave me a list of all the states programs, what they cover, and their phone numbers. Let me know if you are interested:) Each state is different, but still cover mostly EVERYTHING CF related. AND...some states(including mine) will cover CF patients OVER 21!!!!! They only do this for CF patients. Isn't that AWESOME!! I hope that by the time Lil' Chris is 21 that they will still be covering it so that I won't have to worry about him...well I'll still worry about him, but...you know what I mean;-)

I was so glad to hear from Susanna this morning when I checked my email:) For those who don't know who Susanna is, she is one of my dear first dedicated blog readers and was there for me when I needed her many times. Her first son was born with CF and unfortunately passed away at a very young age of only 7 months and 2 days old. I want to share his amazing story with you all, but feel he deserves his own special post;-) I've been wanting to post it for so long, but I want to get all his pics and music in it to make it as special as he was. He deserves it:) Soon I will get it to you all I promise!
Susanna and her husband went on to have another baby boy, Nathaniel, then her 2 girls Janna and Chloe, and then a baby boy, Levi. Only Janna and Chloe have CF. Here is the lastest update on how they are all doing:
Dear M,
It was sweet of you to wonder about us, it really brightened my day. I have been quite overwhelmed of late since Greg left for Afghanistan (3 months ago now). He is safe, though he has had some close calls. It seems I can never keep up with all the treatments and meds. Or maybe I should say I can never keep up with the cooking, cleaning, and laundry, AND the treatments and meds:0!
The girls have had some issues too. On June 4th Janna's lung function was PERFECT! (100%/109%) 3weeks later on June 24 her numbers had dropped to 70%/57%!!(I might not have my #s exactly right, they are not right here in front of me) We almost got admitted that same day! But they decided to let us try the oral antibiotic Zyvox first. Thank God, a week later her numbers were back up to 90%/75%. We go back to clinic Thursday and I'm sure hoping for another 100%!!
Chloe had some issues in June also. We were at a camp (we had air conditioned rooms and dining facilities) but it was extremely hot. I could see Chloe was becoming dehydrated and losing appetite etc, so I was really trying to push the extra fluids (trying to do all the "right things"). Sat. morning we had breakfast and walked outside. Instantly it was as if the heat had hit her straight in the eyes and blinded her. She started staggering with her arms out looking and crying for me, I knew immediately that we were dealing with dehydration and she was slipping into unconsciousness. We tried for probably 15 minutes to keep her awake and rehydrate, but she just kept slipping back out. I had someone call for the ambulance (it was 30 min to the closest hospital- which thankfully was a military hospital that I had access to, otherwise it would've been 45 min-1hr). After 400mls of IV fluids and repeated lab work to get her levels better we were able to leave the hospital. But we were actually in the ER 3 times in 8 days before she was completely back to her normal self again.
My "normal" :) sons... Nathaniel had to get stitches in his chin from his experience learning to ride a two wheeled bike! Levi has had ear infections and has started walking (he's the first child that Greg has not been able to be there during that big milestone:(
Me??? I was treated for a tick borne disease (not lime's)... I have unexplained weariness and fatigue:)...I've mailed 10 boxes out to Afghanistan in the last 12 weeks:)... I spoke at a church on July 5th about what it means to be a true patriot... I have unexplained weariness and fatigue ... I'm doing extra treatments and antibiotics... we've traveled to Savannah for Greg's family's Reunion,... I have unexplained weariness and fatigue:) Ok maybe I'm being a little silly, but it's not too far from the truth:) Seriously, it has been a little rough lately with everything going on AND the 19th made 6 years since our son Timothy died. Sometimes I deal with it a lot better than other times...and this has been one of those harder times. Greg and I both miss him so much. Greg and I were up in PA at his grave six months ago, but I probably won't be able to make the trip back up there again until Greg comes home, so it could be awhile...I still love my little man. (You should look at the pictures of him again in that little book I sent you and see what a cute little boy he was:-)
On to Lil Chris,... I really enjoyed reading your post and all the comments left by others. All this helps me too. The only thing I wanted to mention is the Heavy Whipping Cream!!! That stuff is awesome source of calories and fat!!! Put it in everything...potatoes, mac'n cheese, bottles, milkshakes, ice cream, puddings, tuna and mayonnaise, chicken soup, anything you're going to stir up just a TBS here and there can easily add a couple hundred calories a day! My girls drink the Boost Kid Essentials 1.5 (was called Kids Resource before name change). That stuff has 355 cals in 8 oz...add 1 Tbs heavy whipping cream...we have a 400+ 8oz bottle! Yippee! And they don't even notice the different.
Another thing my girls love is Sour Cream, they call it "Salad" :) There favorite choice for a meal is "Cheese and Salad". Obviously I don't let that be there meal every time, but there have been a couple times that I get frustrated just trying to get them to eat SOMETHING, that even I have suggested "Cheese and Salad" :) Ok, maybe this has been long enough. But I had a couple months to make up for:) Happy Eating:)
Love and Prayers to you All,
Susanna


Thank you SO much Susanna! It's SO good to hear from you and how the girls are doing:) I love your idea about putting the Cream in everything. I wasn't thinking about that:) I'm glad to hear that my posts and the comments left by others help you out too:) That's one of my main purposes for blogging...to help other CF families out too:) Please keep us posted:) Thinking of you guys always,

M

Monday, July 20, 2009

Cool Link About CF and How do I count Calories for Lil' Chris?

Here is a cool link that my good friend Carmen's mom sent me...www.sacfa.org.za


If you are a CF mom or even a CFer, you should check it out. If you click on the "CF Kids" it's pretty cool how they animate and explain CF and enzymes and just everything about CF! You could even watch it with your CF child and they would probably love it just like Lil' Chris did:) It's a lot of fun!


As for an update on Carmen, she is doing well CF wise, but she just got 2 wisdom teeth pulled. OUCH!! She is also doing a CF clinical trial still, which I admire her for:) I pray she continues to do well. I'll keep you updated.


I've been meaning to write Susanna for an update on her 2 girls who have CF, so I will let you know when I find out. Hopefully all is well with them.


To update you on Lil' Chris, he is doing better, his cold is all gone. He still coughs sometimes, but it's not the wet cough anymore so that's GREAT news!! I guess the Augmentin is really kicking in:) He still is not eating as much though and is having some really smelly diapers...if ya know what I mean;-) I keep thinking that maybe we forgot to give him his enzymes one time or something, but we don't think we did! Weird. Maybe it's just the Augmentin finally hitting him..IDK.


So we tried the rest of the supplement drinks that Alma gave us and he still would not drink any of them!!! So frustrating when I know his body needs the extra calories and nutrients!! So what did we do today???? We went food shopping and spent tons of money and time searching for anything with tons of calories for him that we think he might eat! Well, we hope anyways. If not, momma's gonna gain back the 27 lbs she lost!! Nobody wants that, esp me!! ;-)


I'm not really sure if I'm reading the labels right for what's good for CF, I've never really had to look at labels before except to see if it had milk in it or not b/c I'm lactose intolerant. So this is what I look at and if I'm wrong, someone PLEASE let me know! We all know that food is so important for CF!...



  1. Cheese crackers with Peanut Butter: Serving Size=1 package(6 crackers), Calories=190 I just noticed now that I am looking at them all, that they all say Calories from Fat. What does this mean? Is this what I should be looking at? Or do I just look at the Calories per serving?? I think this should be something that the CF clinic should teach new CF parents! Luckily I have you all to help me;-) So this one says...Calories from Fat=90.

  2. Mini Oreo's: Serving Size=9 cookies, Calories=130, Cal from Fat=50.

  3. Betty Crocker Fudge Brownie Mix: Serving Size=1/20 pkg, Cal=Mix is 100 and Prepared is 170. Cal from Fat=Mix is 5 and Prepared is 80. What does Mix mean? I feel so stupid now;-)

  4. Chocolate Icing to add extra calories to the fudge brownies above: Serving Size=2 tbsp, Cal=140, Cal from Fat=50.

  5. Jell0 Oreo Cookies 'n Cream instant pudding mix: Serving Size=1/4 pkg, Cal=120, Cal from Fat=10.

  6. Reese's Peanut Butter Chips(I'm getting desperate here, I don't intend to bake them into anything. I'm just going to see if he'll eat the chips alone for extra calories;) : Serving Size=1 tbsp, Cal=80, Cal from Fat=35.

  7. York Peppermint Pattie: Serving Size=1 piece(it's a big one), Cal=140, Cal from Fat=25.
  8. Peanut M&M's: Serving Size=1 pack, Cal=250, Cal from Fat=120.
  9. Chocolate Instant Pudding Mix: Serving Size=1/4 pkg, Cal=Mix is 110 and with 2% milk reduced fat is 170, Cal from Fat=Mix is zero and with 2% milk reduced fat is 25. Again, not sure. If I use whole milk the Calories will increase right??
  10. Heavy Whipping Cream(thanks Alma for the suggestion and where to find it in Wal-Mart;) : Serving Size=1 tbsp, Cal=50, Cal from Fat=50.

Hopefully someone can explain the right way how to read the labels for me that will benefit Lil' Chris. It will save me time and money probably...hopefully;)

Ok, now that I just took a pic of it all, I realize that this is all junk food!! What kind of mom am I? lol I got tons of other stuff too to try. He's so picky though! We'll see if he eats any of it.

So which one of the above do you think is the best for Lil' Chris and why??

M

PS. Lil' Chris' latest song that he likes to sing is "We Will, We Will Rock You!!" It's from one of his cousin's toys that he played with weeks ago! What a memory, huh? lol

****UPDATE: I just gave a lil' cup full of the Reeses's Peanut Butter Chips to Lil' Chris and he "drank" them out of the cup and then said "Mmm good!" YEA!!! But... then he wouldn't eat anymore:( Hey, maybe I'll add some to the brownies;-) lol He seems to be liking the mini oreo's, he keeps asking for more of them:) He ate one Cheese and Peanut Butter cracker and then asked for more mini oreo's. lol He took a little taste of the York and then wouldn't touch the rest. lol I'll let you know how the rest goes:)

Thursday, July 16, 2009

CF Update/Father's Day Pics/4th of July Pics

I owe a BIG THANK YOU to Alma(Jack's mom)!! She dropped off a bunch of supplement drinks for Lil' Chris to try. So far no luck unfortunately:( We tried the chocolate one and the creamy strawberry one. He drank a little bit of the chocolate one, but only one sip of the strawberry one. I was hoping he would like one of them. We still have a couple more to try so I'll let you know the outcome.

Here are some pics I've been meaning to post. This one if of Chris & Greg's Father's Day!! We were fortunate enough to have Chris' sister and husband(Greg) and family join us on Father's Day:)

This one is of our first 4th of July as a family of 4;-) We went to our church parking lot to watch them. They had some cool stuff going on. Unfortunately Ayla wasn't feeling her best. This was right when she first got her cold. We were actually debating on going or not. We didn't want Lil' Chris to miss it so I stayed in the car with Ayla until it was fireworks time:) We had a BLAST!! Even Ayla liked watching them once she woke up;-)



Hope you enjoyed them:)

M

PS. Tomorrow Sally from BCMH is coming for a visit:)

Tuesday, July 14, 2009

CF Update: One week after Annual Visit

I was wrong about Lil' Chris hating the Augmentin! He loves it now! THANK YOU LORD!!! (He likes to push the syringe in;) I just hope that this antibiotic works. I should have told the dr. to give him Ceftin. I think that one works better for him. I guess we'll find out. He's been on the Augmentin for 6 days and his cough is still there, I think it might be getting better a little bit. On a good note, his cold is almost all gone!! His nose isn't running nearly as much as it was. Ayla's cold has been gone for a few days now. Yea!

You know what I forgot to ask the nurse on the phone the other day? What percentile he was in for his weight and height. Barb at work asked me the other day and it dawned on me that I never asked! You would think that this would have come up in the 3 hours that we were there! It was probably just an accident. They are usually so good there. Oh well, lesson learned. It was more distracting having 2 kids in the tiny room. I have to remember next time to still stay focused on the task at hand no matter how much they may distract me.

I still haven't heard back about the results of his throat culture. I'll let you know when I do. Hopefully it's normal!

I tried the other Vanilla sample supplement drink with him and he took one sip and that was it!! I knew it! He HATES vanilla drinks! It seems like we have tried everything....but we haven't;-) Alma(another CF mom in my town) said that she would give me some of the milk based Resource drinks that her son Jack drinks. I didn't know that Resource had milk based ones too! I wonder why the dietitian didn't tell me about it. Jack likes the vanilla, but I know Lil' Chris won't drink vanilla, so Alma is going to give me a chocolate one and a strawberry one to try with Lil' Chris. Hopefully he will take to one of them and then I can put this search to an end!!

As for trying to get Lil' Chris to cough after each Vest treatment...yeah, not going so well! Most of the time it's b/c we forget, but the times we do remember, he won't do it. Practice makes perfect, right?? =) We'll keep working on it.

I had the best time watching Lil' Chris make Ayla laugh today!! I just wish I could catch it on camera. Hopefully one of these days I will so I can share it with you all;)

Tonight I was asking Lil' Chris "Whose your best buddy?" and then I was trying to get him to say Mommy. After the first time, he did it!! I was shocked! But then he hit me in the face. lol So much for "Best Buddy's" LOL =)

Ayla is really liking her feet right now. She was pulling her socks off today and trying to put them in her mouth. Gross I know, but it's not like she walks around or anything :) lol She is grabbing at everything now...including my HAIR!!! OUCH!!! Apparently she is taking after her brother too...she loves to hold the remote for the TV;-)

HOPE YOU HAVE A GREAT DAY,
M

Thursday, July 9, 2009

CF Clinic Update & CF Question????

I still hadn't gotten a call back this morning from the clinic, so I called them and the nurse said that his weight was actually up a little bit 27.9 from 27.6! I was shocked! Same thing for his height 34.76 from 34.41. Now this is what doesn't make sense to me...his BMI went from 65% to 43 %!! WHAT?!? How is that possible if he went up in both weight and height???? She said that it was b/c he grew so much so it threw it off. Does the difference between 34.76 and 34.41 seem that much to you?? Yeah, I don't get it. I REALLY wish they would have went over this more in our meeting. Can anyone explain this to me, b/c I'm lost???

I tried giving him that new drink and he drank a little at first, but then wouldn't touch it anymore. The same thing he did with the other drink he had at the clinic. I tried the strawberry sample, so hopefully he will like the vanilla sample. I highly doubt it though since he hates vanilla:( So now what??? It seems like we have tried EVERYTHING!! I'm just glad that he didn't get sick from those samples like last time. I was all prepared to be up all night with a throwing up child;-) I gave it to him purposely last night, b/c I have off today;-)

I also asked the nurse today what I should do about the new script the dr. wrote for the Creon 6, since we order over the phone from the CF Services. She said to just mail the script to them. I didn't know you could do that! Does anyone else order from CF Services? Just wondering, b/c a portion goes towards a CURE!

HAVE A GREAT WEEKEND!
M
PS. We started the Augmentin yesterday and he HATES it! This should make for an interesting 20 days;(

Wednesday, July 8, 2009

2nd Annual CF Clinic Visit 7/8/09

Today Lil' Chris had his 2nd annual CF clinic visit at the Children's Hospital. He was such a good, brave lil' boy!!! He got his first hospital bracelet and he got measured and weighed on the big boy scale!!!

As soon as we got there, they made us go get his lab work done, b/c we couldn't do it before hand like they had wanted. He of course did not like that part, but what kid would like getting pricked with a needle? Luckily they got the blood on the first try, thank God!

Then we went back to the clinic and waited for all of our visitors. First came our Physical Therapist. She asked if he does well with the Vest and I said he does GREAT with the Vest! Then she asked if he ever coughs afterwards or during the Vest treatment, and I said no not usually. She was a little worried about that since the Vest is designed to break up the thick, sticky mucus so that it can be coughed out. She suggested that we try to get him to cough after each treatment or in between frequency changes. Oh yeah, she also changed our settings. We now have to do it for 30 minutes 2 times a day instead of 20 min. 2 times a day. She is keeping the pressure at 4, but adding a 10 min. session at frequency 10. We used to do pressure 4, frequency 12 for 10 min. and then frequency 14 for 10 min. Now we do pressure 4, frequency 10 for 10 min. then frequency 12 for 10 min. and then frequency 14 for 10 mins. This is how she explained the reasoning to us....

Think of your lungs as a tree... frequency 10 breaks up the mucus in the trunk of the tree to be coughed out. Frequency 12 breaks up the mucus in the branches of the tree, which goes into the trunk of the tree which can be coughed out. Frequency 14 breaks up the mucus in the leaves which goes into the branches, which goes into the trunk which can be coughed out. That's why it is important to start with the smaller frequency and work your way up to the higher frequency. You basically are making a clear path for the mucus to be coughed up easier. Makes sense!

She then did tests with him to see if he could stack blocks and point to pictures and say what they were and so forth, but he was just acting shy and didn't want to cooperate. I knew he could do some of the stuff, but I also knew he wouldn't do it for her in a new environment. There were too many new things in the room for him to explore. We'll have to work on that I guess;-)

Then our CF doctor came in and pretty much right away said he needed some Augmentin for his cough. I told him how for weeks it would come and go and then once this cold hit, the cough hit him harder too. He's been coughing the most today. So now he is on Augmentin for the next 20 days...2 teaspoons 2 times a day.

The dr. said that his lungs sounded "clear as a bell!" THANK GOD!! He is going to keep him on the 15mg of Prevacid Solutab once a day and 2ml of Vitamax once a day. The only other big change is that he is switching his enzymes from Creon 5 to Creon 6. Apparently they are going through some big changes and won't be making the Creon 5 anymore. He will still be taking 3 with every meal and snack though. I asked him if it was ok to take enzymes with a spoonful of dairy products and he said it's fine, but I always heard otherwise, so I might just play it safe and not do it. I know that when I take my lactaid pills with a spoonful of ice cream instead of water, I always get a stomachache. I also asked if he needed enzymes for small snacks like a lil' bag of fruit snacks or a lil' drink of milk and he said yes. That was a controversy between my hubby and I. It still is apparently. My hubby said I should have asked if he needs them for a couple of bites of something, like a couple of gold fish crackers or a couple of bites of our food to taste it to see if he likes it. I still say it's better to be safe than sorry and just give him the enzymes first. This seems to be the hardest thing for us, b/c sometimes when we are out with friends or family and they are giving their kids snacks and ask if Lil' Chris can have some, I always hesitate and my hubby always says it's fine if it's just a few. Will it ever get resolved? Eventually I guess when Lil' Chris starts noticing if he gets a stomach ache from it or not.

The dr. also did a throat culture. I'll let you know the results when I get them. Lil' Chris also had to get a shot in the leg today:( He did not need to get chest x-rays this time since it is done every other year when they are this small. Oh yeah, I also asked the dr. if there is any type of cold medicine that we can give Lil' Chris since he has a cold right now. He said NO! All they do is dry up the mucus, and for Lil' Chris it will make his mucus like cement. Then it will be even harder to break up and cough out. I also asked if dairy products aren't good when he has a cold, and he said it's fine and it's just a wives tale.

The dr. said that his weight gain was not where they would like it to be, but never told me what it was nor his height. I was going to ask, but you know how that goes...you move onto another subject and forget to go back to it. I called after our appointment when I realized it again, but they have yet to call me back. I'll let you know when they do. I had a feeling his weight was going to be down since he has not been eating good lately do to being sick:( Hopefully he gets his appetite back soon!!!

Next came the genetics counselor. She didn't really do much since we did our family tree last year. All we had to do was add our precious lil' Ayla to the tree;-) Then came the Dietitian. She also was not pleased about his poor weight gain. She asked lots of questions about what he will and will not eat. He'll eat cereal, hot dogs, lunch meat, cheese, but no mac n cheese or pasta or bread or eggs. She didn't seem to mind that we still give him baby food after seeing that he doesn't eat too much. I guess she figures the more calories the better, same as us:) She wants us to try salsa with him and fish sticks too to see if he'll eat either. She does want him to try a new drink called Vital Jr. from PediaSure. Now if you guys recall, PediaSure has made him sick in the past. This stuff doesn't say it has "Soy Protein," so I guess we will give it a try and pray he doesn't start throwing up for 3 hours straight like all the other times we have tried any supplements. These drinks are 8 oz. and have 237 calories. I'll let you know how he makes out. She let him try a different drink while we were there to see if he would like it. It was Resource Breeze from Boost. It was in a red juice box with a straw and it was orange flavor. He drank about 1/2 of it down pretty fast, but refused to drink anymore after that. It had about 250 calories. I was surprised for it being like a juice. Hopefully he will take to one of these drinks so we can get his weight back up.

She also informed us that we will no longer be getting the Wee Care Program. We were supposed to get it until he turned 3, but they changed it. Wee Care gave him free enzymes and Vitamax. So that's just great that we won't be getting that anymore!!! Not sure how much they are going to cost us. Hopefully BCMH will cover it. I've heard that the enzymes cost about $1 per enzyme. Lil' Chris takes about 15 a day, so for 31 days that means $465.00 and for 365 days that means $5,475.00!!!!! WOW!!! And that's just the enzymes!!!

All in all, it was an interesting day. Since Lil' Chris was SO good at the dr.'s, we took him to a new playground afterwards. He had a BLAST and went down ALL the slides!! Then when we got home, Lil' Chris helped Daddy put together a swing set that one of our neighbors gave us! Wasn't that SO nice of them?! They also gave us a sand/water table and a plastic pool too! Cool huh? Lil' Chris LOVES them!!

You know what the hardest thing for me today was? It wasn't holding my baby down while he was screaming getting his blood work or throat culture or shot done. It was letting my baby go. Letting him play with the toys and touch things and be free. My baby is getting so big so fast. I can't protect him like I used to. He wants to be free and explore. All I can do is hold back everything inside me saying "Don't Touch!!" and let him be a kid. This is the hardest thing for me, b/c I just want to protect him and keep him well. But now that he is 2, I feel like I can let him go a little bit. I did my part. The dr.'s told me from day 1 that the first 2 years are the most important. They said if I could keep him as healthy as possible in his first 2 years, the longer he would live. Only 3 colds in 2 years is pretty good I think;-) BTW, we sanitized like crazy;-)
His next clinic appointment is on August 5th at 2pm. Usually they want to see him every 3 months, but I guess since he has a cold they want to see him sooner to see if the antibiotic works.
M
PS. His new words are "Bless You" after anyone sneezes or even coughs...too cute;-) And Ayla found her feet today:)

Tuesday, July 7, 2009

Colds & Clinic Visit Tomorrow & Fire Trucks ;(

Guess what???? Lil' Chris AND Ayla are sick :( Poor things :(

We got back from our vaca to NJ on Wed, and Ayla's nose started running on Fri. I tried to keep her away from Lil' Chris as much as possible, but you know how that goes. We left them alone one time together in the living room while we got dressed to go out on Sunday, and next thing we knew...Lil' Chris' nose was running! Can it really happen that fast?!? So now Ayla is doing better, but Lil' Chris' nose has been running since Sunday. Of course we would have to have our ANNUAL CF clinic appointment TOMORROW!!! Maybe it's a good thing, but maybe it's bad b/c he does not want to eat as much right now. So I'm just waiting to hear the bad news that his weight fell below the 50th percentile:( I pray we get good news and that his BMI is good too. I'll let you know how it goes. We are expecting a 2-3 hour visit. That's how long the annual visits are, b/c you have to see EVERYBODY!! Let's see if I can name them all...the CF doctor, the social worker, the dietitian, the nurses, the physical therapist, and the lady who goes over the family tree(I forget her title;). The last time we were there, they told me that they were working on shortening the visit times, so I guess we will see tomorrow.

For now, I am busy filling out all the papers for the renewal of our secondary insurance for Lil' Chris. Our state has what's called BCMH(Bureau for Children with Medical Handicaps). It basically pays for all CF related things. I thank God for this, b/c with out it we would probably be living in a cardboard box!! Every year we have to reapply to see if we qualify for another year. This year, I have no doubt that we will qualify again. It's been a rough year for us. I pray things turn around for us real soon. There are soooo many things I want to do with Lil' Chris and I want him to see and explore while he is still really healthy. I don't want him to miss out on anything just b/c we can't afford to do certain fun stuff. I can just picture myself in the future sitting by his hospital bed holding his hand wishing that I would've listen to my Dad, finished college, got a good paying job so that Lil' Chris could've done what ever he wanted while he was capable. I guess that's the hard part about this horrible disease...you just never know the future...you don't know when it's going to hit or how hard it's going to hit...or how long you have before the inevitable.

Well, the fire truck just left....a few minutes ago, Lil' Chris was standing up in his crib and put his knee through the spindles and got it stuck. I heard him crying while I was typing this post and it was not his usually "Come get me, Mommy" cry. So I ran up there and saw it and I tried to get it out, but it wasn't budging. So I tried some soap, b/c that's what I used to use to get my rings off before I lost all this weight. Well, that didn't work. Then I tried some butter. That didn't work either. My next option since my hubby wasn't home was to call the fire department. I tried one more time to get it out before I called them and as I was trying he said "STOP!" I've never heard him say that word before, so I new it was hurting him and that I HAD to call 911. A few minutes later, 3 nice men came and got it out. At first they couldn't get it either, but then they had 2 of them pull the bars and one push his leg through. IT WORKED!! HE WAS FINALLY FREE!! He was a very brave lil' boy:) Here are some pics of our lil' morning adventure...

Wish us luck on our CF clinic visit tomorrow. He still has that lingering cough, so he'll probably be put on an antibiotic. I just pray that his lungs are still clear and his weight is still good.
M
PS. I'm still uploading the million pics we took on vaca and 4th of July...coming soon:) For now, you can check out the pics I posted in my last post if you haven't already:)