Is Everyone Doing Ok?

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Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 6/12/2006 5:17 PM (GMT -7)   
Is everyone doing okay?  Let us hear from you.
 
Kathy
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

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imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 6/13/2006 8:13 AM (GMT -7)   

Hello Kathy.  It is going to be a loooong summer here.  Gage, my racer broke his tibia and growth plate on Saturday during practice. We are still awaiting a referral from our insurance to go see a specialist.  This is a child who does not sit still (ever) and his favorite pastime is annoying his mother and little brother.

How is the weather there?  We have been having 100+ days already.

Hope everyone else is doing well and has a great summer!


Sandra
 
Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 6/13/2006 10:59 AM (GMT -7)   
Hi,
Leah, aged 19 weeks, now weighs 11lb 11oz.   It feels like Catch 22. She is having some supplementary solids to keep her hunger at bay and it seems to be working as she is happy in herself and babbling away telling lots of tales  tongue But the weight gain over the last 3 weeks has only been 9oz-not as much as we would like. sad   On a more positive note her chest is clear. tongue
She has been to baby swimming and baby massage and loves both. tongue    This is a faithful rendition of my daughter and I talking about it.
 
Daughter:  Leah is the most beautiful baby at both baby   massage and baby swimming , mum. (beams from ear to ear)
 
Sea 2:   I bet all the other mum's are saying the exact same thing at this moment!
 
Daughter:  Well, if they are they must be telling fibs! yeah
 

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 6/15/2006 3:25 AM (GMT -7)   
Oh no Sandra, sorry to hear about Gage's mishap. Hope things are better for him soon. Yes, it's been pretty hot here, although yesterday, the humidity was way low....I could breathe!!...lol. I did find some salt crystals on my twins face. So, we are keeping a better eye on this during the day.

Sea2, awwww what a cute age and a cute story!.

Have a wonderful day where you are...
Kathy
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 6/21/2006 9:37 AM (GMT -7)   
Leah had 3 monthly check-up today. She is on the 2nd centile for length and weight ( I don't really understand what that means) but her chest is clear so they are pleased with her progress at the hospital.
Sea 2

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 6/22/2006 7:18 AM (GMT -7)   
Sea, I  believe the percentiles mean that 2 percent of girls Leah's age are smaller than her. My son is in the 5'th percentile. Glad to hear her chest is clear!
 
My boys are doing fine.  Gage did not have to have surgery, he goes back in 3 weeks to see how the growth plate is healing, it is almost closed (done growing), so that was a good thing (I guess).
 
Treyson constantly has salt crystals in his eyebrows, luckily the temps. should break today and we are to get some rain.
 
Hope everyone else is doing well
 
Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 7/6/2006 11:56 AM (GMT -7)   
Leah has gained more weight this week as her Creon has been upped.  She now weighs 13lb 3oz at 5 and a half months old.  She is still in 0-3 months clothes but as she experiments with sounds and giggles her small size just adds to her cute factor. :-)
Hope others are okay.   

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 7/7/2006 6:24 AM (GMT -7)   

Sea, great on the weight gain!  I bet she is cute as a "button"!

My boys are doing well.  Trace (w/cf) has lost a few pounds. In the summertime his appetite isn't the best, I think it has to do with the heat.

Everyone else doing well?


Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 7/15/2006 12:01 AM (GMT -7)   
Sorry that Trace has been suffering with the heat. We don't often have that problem in the north of the uk!  Gage should be due his check-up any time now I believe.  Keeping fingers crossed that all healed well.

Leah is 13lb 10oz this week and has been in the local paper to promote the sale of the Growing Hope Rose for CF trust funds.

www.worldofroses.com

This website shows details of the rose.

Hope all are keeping well. Faithful 83 hasn't been on in a while. Anyone know how she is?

Love Sea 2

Post Edited (Sea 2) : 7/15/2006 1:12:21 AM (GMT-6)


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 7/15/2006 5:10 AM (GMT -7)   

Hello everyone!  Trace is still suffering with the heat.  We have a heat advisory all week long.  103 yesterday at 7pm.  At least we have been getting some much needed rain.

Gage's foot is not healing well at all.  He is being put into a full bent leg cast.  The child will not stay off of his foot.  The doc. thinks that the damage may have already been done and non repairable due to his not wearing the boot and using his crutches. Uugggh! Teenagers....they think they know everything.

Great on Lea being in the paper and on her steady weight gain! 

I haven't heard from faithful in awhile. Hope all is well.


Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 7/23/2006 6:28 AM (GMT -7)   

Hi Sorry to hear that Gage is still having trouble with his foot.  I hope it is a bit cooler so that Trace feels a bit better.  It has actually been quite hot here for the past week.  Leah is still 13lb 10oz.  Probably due to the heat.  My daughter has been unwell this week with a virus that has given her breathing problems and a weak arm.  She is feeling down again especially as Leah being in the paper has made the cf seem more real than ever.  It's amazing how many people didn't know already.  Some don't say anything, others try to make light of it, others sympathise and some just don't seem to understand and question everything that the paper said as if they are telling fibs.  Still I am on holiday for a while now so I am hoping to be able to help out more than usual.

Hope people are keeping as well as possible.

Sea 2


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 7/24/2006 6:01 AM (GMT -7)   

Hello Sea.  Yes, I think the heat has a lot to do with appetite and weight management. I found that fruit and salads are great for the summer time, but if your children/babies are anything like mine, they do not like salads and fruits. I have been pumping mine with Carnation breakfast drinks.

Hope your daughter gets to feeling better physically and emotionally.  I find that a good therapist can do wonders and is a great way to vent.  I can totally relate to the different reactions that people have when they learn of my son's illness.  The one that gets me the most is the "he doesn't look sick" comments.  I think people just react differently in their only little ways. They all mean well.


Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 7/24/2006 11:44 PM (GMT -7)   
Thanks Sandra,
I know people do mean well. Everyone says how you can't tell by looking at Leah and say how big she looks in the paper. She does! And at last she is in 3-6 month clothing!!!

She is just 6 months old now.

My daughter, her partner and Leah all went to the seaside yesterday so she feel a bit better after a treat. :)

I hope Gage is keeping the weight off his foot now.

Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 8/4/2006 2:58 AM (GMT -7)   
My daughter says that Leah is not a pebble anymore. She is a stone!!!! 14lbs 11oz. ;)

Hope Gage's foot is improving and Trace feeling better.

Sea 2

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 8/4/2006 7:43 AM (GMT -7)   

Sea,  that is really good news, (not a pebble, now a stone - how cute) LOL!

Good news for Gage - he is out of the cast and the ortho said he is very lucky - no surgery.  Trace is doing very well also (just wish I could put a couple of "pebbles" on him though).

Hope everyone else is doing well.
Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 8/24/2006 3:07 AM (GMT -7)   
Hi Sandra,
Glad that Gage's foot has done so well at last.  Sorry that Trace still needs those extra pebbles.
 
Leah is 16lbs 6oz now which has taken her above the 2nd centile. tongue    She can now sit up and is trying to become mobile.  Her Sats are 98% at the moment.  Can Sats go back up to 100% after they have dropped?  She is almost 7 months old.
 
I have been to Crete for two weeks so have been unable to reply earlier. 
 
love Sea

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 8/25/2006 9:06 AM (GMT -7)   
Hello Sea.  Lea is getting at the "fun" stage, becoming mobile.... I am not really sure about the Sats question, it does sound like she is doing great! :-)
Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss

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