Our old CF Commercial that plays on MCTV. Still working on this years.

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,

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,



Katey said...

You could have gotten a bad "batch" of Augmentin, since it doesn't usually do that. I had that happen once (not the dirty diapers, but a reaction) with a med that usually didn't bother me. It ended up just being a bad "batch". ALSO...with some meds you have the real brand name and the generic name. You may not know, but in the past, has he had one or the other, or both? That's a possibility if he is used to having the real brand name, but is taking possibly a generic form of it now?

on the blog layout: i had someone custom make my blog; so anytime i edit my layout, she has to change the html code (if it's something major like adding the 3rd column). However, if you use a basic template from blogger (which it looks like you do), then it shouldn't mess up your blog. Just choose a template that has the 3 columns.

I'm guessing that it will delete some of your gadgets/applications though (like it did mine). So you will have to reinstall those. But when i did mine the other day, I re-added my followers and the networked blog one and it still had everyone on there (didn't delete anything. Just re-add the widget from facebook and the followers from the gadget menu on blogger.

You will have to re-do your blog roll and re-add all the blog awards, buttons, great strides widget, etc. I know that's a pain. I recommend downloading the current template of your blog in case you don't like the new one (you can automatically re-upload the old template and still have your applications on there).

Also, write down what's on your med list, etc. (or copy and paste into a document), so you don't have to redo all of that by memory. You can look at a piece of paper or document with the info on there.

The labels will stay, but you still have to choose "add gadget": labels, to put it back on your blog.

I think the other "free" blog layout sites (like cutestblogontheblock) has 3 column templates as well. The ones on cutestblogontheblock say "3 column layout" so you have to choose one of those.

Also, here is a website with blogger tips and explains how to add a 3rd column on your own. http://tips-for-new-bloggers.blogspot.com/2007/08/three-columns-denim-template.html I tried and was unsuccesful. But if you can figure it out, go for it because you WILL NOT loose your applications if you do it correctly :) Scroll down on the page to where you see the info!

That's great about BMCH...i've actually never heard of it through our state, but might look into it!

Once again, sorry for the long post...just trying to help out in some way! You may have known everything i posted already :)

Aunt D. said...

Hey M! Thanks so much for the update on Susanna & her family! I will continue to pray for them!! I don't know how she does it all!

I have some ideas for quick & easy but still fattening foods for Lil C - we can talk about it when I see you guys next weekend. WOO HOO! Can't wait!

Hugs & kisses to the kiddos!

Tricia said...

About changing the blog, I went back to basic because I have IRW freinds who have slow computers and coulnd't see all the bells and whistles anyway. Check mine out. I picked a basic (Minima stretch, I think) and then just messed with the colors. Maybe you can get something you like taht way. God bless you.

The Liberto Family said...

I would like some info on the BCMH.

I hope Lil' Chirs is doing better. I have been reading all the comments and it's great info.

Anonymous said...

Sorry... I have no other advice since I'm not a mom yet.... but I do know that Ayla is going through a phase and she will stop.... but if you cut your hair short you will HATE it!! Pull it back for the next month. :-)
Love you!!!