4th of July 2008

Make a Smilebox slideshow

The Things He Loves

We have an appointment to get the sweat test done, blood work done, see the speech therapist, and go for a regular clinic visit. Probably going to be a looooooong day! We still haven't heard back what the results of our blood work was(which genes we carry). Hopefully we will be able to find out at the visit at the end of the month.

Lil' Chris has been doing great! He loves to:
-follow us when we leave the room(crawls, not walking yet)
-stand
-say Dada(not Mama;(
-make noises with his mouth
-hand his diaper to us when we are ready to put it on him
-jump in his johnny jumper
-clap his hands
-run his fingers over his lips and make noise(his new trick;)
-take a bath
-go swimming
-play on his swing
-ride in the car
-babble
-play(esp. with Daddy;)
-fuss when we put his shirt on(???)
-grind his lil' teeth(I hate that!)
-cry as soon as we put him in his highchair until he gets food in his mouth
-crawl where he is not supposed to
-pull my hair(ouch!!!)
-touch what he is not supposed to(gotta love finger marks on the TV)
-take all his toys out of the toy chest and throw them all over the floor

My boy is getting so big! I can't believe he is 13 months already!
M

E-mail from a reader

Hi all! M sent me this lovely e-mail from one of our favorite readers and I thought it would be nice to share it with all of you. Here is a little background on her story... her daughter (C) is in her 20's & participating in a CF research program in Europe. The hope is that the results will end up benefiting all CF'ers. Charmaine had never heard about the vest before reading this blog & her daughter is now actively trying to see if she can get one. It would certainly make a big difference for her rather than having to continue doing manual CPT.
I hope you will join us in praying for C... that she will be able to get a vest, that the research program will go well, for her continuing health & of course for our friend Charmaine who is far from her daughter during the program. Here is the email she sent to us...

29 June 2008

Hullo again, its Me Charmaine - sorry havent been in touch but my system was down. Had lots to catch up with though.

Congratulations on being Preggies........its a gift as you well know and I just want to tell you that although C has CF, my youngest daughter T doesnt......The Lord will only give you what you can handle (although at times you might not think so....)

Just a quickie about the trial C is on - she had more scans done this week - got to see her lungs in 3D which she said was awesome - but also showed how much muck is still sitting there - these scans were done over a period of 5 hours on Thursday and then Friday morning she was back at the hospital for more scans and they showed her how the mucus is sitting in the stomache - this cannot be helped, its a natural thing to swallow unintentionally. She cannot really say much as they keep the findings for their records and will only let her know when the trial is completed - which by the way is 2 1/2 years to go.....

She is still discussing The Vest with the clinic she attends - she reckons they are a bit slow at times but C is a determined person and once she sets her mind on something it becomes a goal and she wont rest until she has achieved..........which sometimes has taken her a long time but eventually she has got what she wanted. Hows that for determination!!

Please if you hear from Aunt D, wish her well with her packing and moving - and I wish her the very best in settling in.

With fond regards
Charmaine.

Food Update

Lil' Chris has been doing well. He didn't like any of those samples that the dietitian gave us. So, I called her and told her and she said to go ahead and get more formula and we'll figure something out eventually. She did say that she wants us to put butter or cream in his baby food to get more calories. Sounds gross to me, but we'll see I guess. I'm not really sure how to do it though. Do I melt it, or should I start buying the margarine so it is softer????? I usually buy the sticks and keep them in the fridge. She wasn't very specific. I may have to call her again to ask. I hate to be a pain though.

She also said she wants us to start putting the food we eat into a blender and feed it to him, since he won't eat the table food normally and because he only has 4 teeth. When we try to give him table food, he'll take it, but then keep it in his mouth for awhile until he gags on it or throws it up or spits it out. Weird???? Sometimes he will take some soft foods just fine though. So, we'll see how the butter thing goes and the blender thing goes. I'll let you know.

As for the pregnancy, I'm starting to feel a little bit better each day. THANK YOU LORD!!

Hope you have a nice weekend,
M

PS. Thank you honey for taking care of Lil' Chris and the house and food shopping and everything while I wasn't feeling well! You are the BEST HUSBAND EVER!!! I LOVE YOU!!!!!!!!

Vacation

It was a looooong trip, but well worth it! In the 15 hour car ride, Lil' Chris learned how to clap his hands! YEA!! Now he can't stop. Every time we say "Yea", he claps. It's so cute. His forth tooth also started to come in more that weekend. Now he has 2 on top and 2 on bottom.

I hope my Aunts and Uncle and Gram don't mind me putting their pictures on line. D said she warned you :) LOL

HOPE YOU HAVE A GREAT 4TH OF JULY!!
M

HAPPY 4TH OF JULY!

I don't know about all of you but the 4th of July is a big holiday for my family. We get together every year at my Mother & Father in-law's house for a pool party followed by the township parade & fireworks. It's fun to have all the cousins together for the day & they love going to the parade together. The kids look forward to it all year & truthfully....so do I! =)

I feel very privileged to have grown up in America...to be raising my kids in such a wonderful country. It is my honor to stand & salute our flag & our veterens as they walk by us in the parade. It gives me a great opportunity to teach my children the importance of being thankful for the freedom they enjoy & for the men & women who serve & protect our country. I hope they always remember that lesson. Our freedom is not guaranteed. It was fought for & won & now it is fought for & protected. I pray for our Armed Forces & I am thankful for the job they are doing that has protected us from any further attacks since 9/11. God Bless them for their sacrifice that is so easy to take for granted in our easy life here in the US.

Thank you for your service men & women of our Armed Forces! It is because of you & all that have gone before you that the United States is the greatest nation in the world.

God Bless the USA!!

Shots Update

I'll make this brief since I'm still not feeling very well. I have to say a special THANKS to my wonderful brother- in- law who fixed our laptop over the phone! THANKS YOU SO MUCH S!!!

Lil' Chris got his 1 year shots yesterday and his finger prick done. He was such a champ! He didn't cry at all when she pricked his finger! He just sat there the whole time playing with the paper on the table while she kept squeezing the blood out of his lil' finger to get a sample. Now, the shots on the other hand.... that was a different story! He of course cried, but only for a couple of minutes. He is such a good baby:)

They said that with these shots, he may get sick over the next couple of weeks. Hopefully we don't run into that problem. Although he did throw up a few hours after getting the shots. We are not sure if it was from the shots or from the samples of different things that the dietitian gave us to try. My husband tried to give him 3 different kinds yesterday, but he wouldn't even barely taste them. I can't blame him after what he went through with trying the PediaSure. Hopefully he'll like one of the ones I'm going to make him try today. Here is the list of things we got to try...

Bright Beginnings Soy Pediatric Drink : Vanilla
Nutren Junior Fiber by Nestle Nutrition : Vanilla
Ele Care (powder) : Vanilla
Nutricia E028 Splash : Orange Pineapple
Just For Kids 1.5 Cal : French Vanilla

Has anybody used any of these before? I've never heard of them. Let me know what you thought of them or what you used after formula.
M

Lil Chris Update

Good morning!

I talked to M on the phone for a little while yesterday & she said Lil Chris is doing better! Yesterday was the first day he was back to himself since his last episode with the Pedia Sure. Unfortunately the dietician wasn't able to bring her the samples of Pedia Sure alternatives on Sunday though so they are just continuing on with his formula. Hopefully he won't have the same reaction to the other supplements as well.

I asked M how she's been feeling & she said she's counting down the weeks to the end of her first trimester. =) I remember feeling like that too! It always felt like a fog lifted from my brain after the 12th week. I hope it works out that way for her & doesn't linger on like it did with Lil Chris. Her experience has been different this time though, no throwing up all day & she can actually eat more than just slurpies & crackers so who knows maybe it'll be a girl! I hope so! I have bins & bins & bins of girl clothes that I've been saving to pass on to my sisters. :P

M & I were talking about names yesterday too. She's not sure what she wants to do yet but she likes traditional names. We won't know what she's having for another 10 weeks or so but we were discussing girl names. I've got a fun idea! Why don't you give us your suggestions for both boy & girl names & I'll list the top 3 of each in a future post!

Have a great day!