On my day off today, I tackled winter clothes sorting, costume shopping for Halloween and...created our very own Helping Hands Site (thanks to my near and dear friend Catherine). As if she doesn't have enough on her plate, she took time amidst chemo treatments for cancer to help me finally get the ball rolling.
Lotsa Helping Hands is a website that answers the most common question we hear "What can we do to help?" in a very 21st century sort of way.
All you need to do to join is an email address. From there you will go to our community page: Topel's Helping Hands
Request to join. After we "approve" you as a member, you will receive an email letting you know what else you need to do to finally be officially in our group!
For now, we have set up 3 times a week for someone to help with nebulizer treatments and therapy (about an hour and a half time committment) and a few meals. The calendar on our site tells you when we are in need of help and let's you select which need you can meet for us. The site is very cool in that it sends you reminder emails the week and day before, as well as the day of. That's something I need for every task in life! I'm sure we will add more needs like play dates for Colin during clinic appointments or rides if an appointment is in the afternoon and we won't be back in time for school pick-up. Please check our site for more details as we learn more about how beneficial this will be for our family.
I also wanted to give a quick update on Trinity. We have been more than blessed with yogurt scouts and shoppers alike, but much to our dismay she has been resisting even the more with every ounce of our pushing food on her. So we have decided to back off a bit and give her some breathing room. 2 weeks ago we increased her enzymes and have not seen any changes in weight. The next step will be a different acid reducing medication. After getting a lot of great perspecive from other CF parents on getting GI tubes at such a young age, some of them suggested appetite stimulating drugs as an alternative option they were offered. I will definetely be bringing that up when I talk to our dietician next.
So in the meantime, please pray for a healthy, ravenous appetite. That's what we need the most before we return to clinic on November 11th.
Thursday, October 20, 2011
Saturday, October 1, 2011
Appointment Update
We spent all of this past Friday with clinic returns for all three kiddos since their weights were all a bit low this last trip to the doctor. We were well over due on our their labs so we did 3 xrays+ 3 labs+ 3 flu shots. Just for fun :)!
Cayden is up nearly 4 lbs (praise God!) which was a huge relief since his weight dropped so much from his cough at last clinic. He is steadily getting more used to PFT's and Dr. Green is confident that he will be a pro at them in no time.
Cooper is also up 2 lbs even though we are barely trying (and actually purposefully cutting back).
Trinity also gained weight but a very small amount. And looking at her growth chart she does little change from month to month. And that's when the conversation took me to somewhere I was not at all prepared to go. Dr. Green felt it may be necessary to seriously think about placing a g-tube (feeding tube) for nighttime feeds. This would give her an extra 500-600 calories a day while sleeping. It's hard to think of the decisions you have to make because of CF. All I can think of is a 14 year old girl wearing a swim suit and having a permanent tube coming out of her body. And this burden-of deciding her future is in our hands. It's just unfair. I think of all the choices we need to make that we shouldn't have to for our little 3 year old. Making the choice to have a feeding tube shouldn't be one of them. We should be making decisions like which school she'll attend and what spring recreation sport she wants to go out for. But not this. It is too permanent. Too scary.
For now we have 2 options in our treatment plan. The first is to increase her enzymes although she is already on a much high dose for her body weight. The dietitian asked us to give her 4 weeks at the new dose before doing a weight check. The second option will be to chance her proton inhibitor (acid reducer med) from her current med (Zantac) to something stronger.
In the meantime Chris and I are trying everything we can to help our little girl eat all the extra calories we can. We talked a lot last night after the appointment about the need for getting help at mealtimes just to have someone keeping track of her finishing her plate. The dietitian suggested a reward system for when she clears her plate and finishes 3 Ensure shakes. We started it yesterday at dinner time :)
On a side note: Finding store bought high calorie foods is getting more and more difficult. I went to buy yogurt we used with Trin when she was a baby that is made with whole milk and VERY high in calories. I couldn't believe it when I went to Wal-Mart it wasn't there anymore. And every single yogurt is NON-FAT. So if anyone knows of a high calorie yogurt please let me know. I'm looking for it!!!
Continue to pray for Trinity. We have 6 weeks until we return to the doctor and we are running out of options. I am so not prepared to make this decision for my three year old...
Cayden is up nearly 4 lbs (praise God!) which was a huge relief since his weight dropped so much from his cough at last clinic. He is steadily getting more used to PFT's and Dr. Green is confident that he will be a pro at them in no time.
Cooper is also up 2 lbs even though we are barely trying (and actually purposefully cutting back).
Trinity also gained weight but a very small amount. And looking at her growth chart she does little change from month to month. And that's when the conversation took me to somewhere I was not at all prepared to go. Dr. Green felt it may be necessary to seriously think about placing a g-tube (feeding tube) for nighttime feeds. This would give her an extra 500-600 calories a day while sleeping. It's hard to think of the decisions you have to make because of CF. All I can think of is a 14 year old girl wearing a swim suit and having a permanent tube coming out of her body. And this burden-of deciding her future is in our hands. It's just unfair. I think of all the choices we need to make that we shouldn't have to for our little 3 year old. Making the choice to have a feeding tube shouldn't be one of them. We should be making decisions like which school she'll attend and what spring recreation sport she wants to go out for. But not this. It is too permanent. Too scary.
For now we have 2 options in our treatment plan. The first is to increase her enzymes although she is already on a much high dose for her body weight. The dietitian asked us to give her 4 weeks at the new dose before doing a weight check. The second option will be to chance her proton inhibitor (acid reducer med) from her current med (Zantac) to something stronger.
In the meantime Chris and I are trying everything we can to help our little girl eat all the extra calories we can. We talked a lot last night after the appointment about the need for getting help at mealtimes just to have someone keeping track of her finishing her plate. The dietitian suggested a reward system for when she clears her plate and finishes 3 Ensure shakes. We started it yesterday at dinner time :)
On a side note: Finding store bought high calorie foods is getting more and more difficult. I went to buy yogurt we used with Trin when she was a baby that is made with whole milk and VERY high in calories. I couldn't believe it when I went to Wal-Mart it wasn't there anymore. And every single yogurt is NON-FAT. So if anyone knows of a high calorie yogurt please let me know. I'm looking for it!!!
Continue to pray for Trinity. We have 6 weeks until we return to the doctor and we are running out of options. I am so not prepared to make this decision for my three year old...
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