I am very much a clothes snob. I admit it. I like certain clothes and brands and I stick to the ones I really like. For my kids, they primarily wear Hanna Andersson. With Talli, I had lots of problems with her getting rashes from different fabrics or exposed elastic. When she potty-trained, I had problems finding underwear without exposed elastic. Then there is the body shape issues- she is short and puggy. I also dress my kids modestly, Talli doesn't wear short-shorts or tank tops. She can't fasten waistband snaps or buttons. For the most part, Hanna was the solution, I can get cropped or capri pants that then fit like regular-sized ones. The elastics are usually covered. Many of the girl clothes have elastic waists.
I rarely even goto a Hanna store anymore, since I can call up an outlet store tell the employee what size and sex clothes I am looking for and she will look through the store for me and ship, usually the same day. But Hannas can be pricey. I buy some on ebay, however, finding larger sizes (120cm+) can be difficult. Do get on their e-mail list as you will be alerted when sales are occuring, especially at the outlets. I recently purchased some new girl tops for $2.50-4/each.
I just same across the website for Soft clothing for all children. I am so excited! They have jeans with an elastic waistband and they are cute!! Their focus is clothing for sensory-affected kids, but since their clothes do not have buttons they are also good for those with fine motor delays.
They are have a back to school giveaway on their website here: www.softlanding.net/products/sale where you can enter to win some T's, socks, a LandsEnd backpakc, and a bunch of school supplies and sensory toys.
Saturday, August 21, 2010
Thursday, May 13, 2010
"Don't share food", said with a stern expression, while you are giddy inside
Those with Propionic Acidemia often have anorexia. They have no desire or limited desire to eat, so often depend on feeding tubes. I don't know of any affected individuals who have swallowing issues, they just don't eat.
I had a sweet kind of peace when we stopped feeding therapy when she was about 5 years old. She had eaten as an infant and then as a toddler she ate quite a bit. She got her g-tube at 6 months old, which relieved a lot of stress about her getting the food that she needs, especially when she is sick.
Talli does have a good relationship with food, thanks to all of that therapy. She eats when she wants. She is developing table manners. We rely on how much she eats as a guide to how well she is feeling. She gets in food jags, much like toddlers do and wants to eat the same thing all of the time. A few months ago she wanted to eat plained buttered noodles, every day. Now she has moved on to Wavy Lay's potato chips.
Because of food allergies and germs food sharing is not a good idea. But with things like potato chips that have 2 grams of protein per serving (she only gets 14 grams/day) we need to make sure that we know what she is eating. So as I give the kids a snack I tell them that there is no sharing and they repeat the rule back to me.
This afternoon, I just got a chuckle after M had settled down because Talli had swiped all of his chips and eaten them. What a normal sibling thing to do! Since the bag of chips was empty, Talli agreed to buy M a small bag of chips and she apologized. It is also very ironic because M, who is 2, but looks almost 5 asks every day, "Can I have Talli's______?", after she has finished with a meal.
I had a sweet kind of peace when we stopped feeding therapy when she was about 5 years old. She had eaten as an infant and then as a toddler she ate quite a bit. She got her g-tube at 6 months old, which relieved a lot of stress about her getting the food that she needs, especially when she is sick.
Talli does have a good relationship with food, thanks to all of that therapy. She eats when she wants. She is developing table manners. We rely on how much she eats as a guide to how well she is feeling. She gets in food jags, much like toddlers do and wants to eat the same thing all of the time. A few months ago she wanted to eat plained buttered noodles, every day. Now she has moved on to Wavy Lay's potato chips.
Because of food allergies and germs food sharing is not a good idea. But with things like potato chips that have 2 grams of protein per serving (she only gets 14 grams/day) we need to make sure that we know what she is eating. So as I give the kids a snack I tell them that there is no sharing and they repeat the rule back to me.
This afternoon, I just got a chuckle after M had settled down because Talli had swiped all of his chips and eaten them. What a normal sibling thing to do! Since the bag of chips was empty, Talli agreed to buy M a small bag of chips and she apologized. It is also very ironic because M, who is 2, but looks almost 5 asks every day, "Can I have Talli's______?", after she has finished with a meal.
Thursday, April 15, 2010
Cherrybrook Kitchen
I am so excited! Today I received in the mail 3 coupons for free Cherrybrook Kitchen products. Cherrybrook Kitchen is an allergy friendly and also low protein food company. They sell cookies, brownies, baking mixes, frostings, and they have a gluten-free line as well. They are sold on-line, but also at health food stores, Target, and locally for us, Jewel-Osco/Albertson's.
They have a rewards program called "CBK Rewards" where you send in the bottoms of the boxes with the UPC code for cool stuff.
A Cup-a-cake cupcake holder is 4 box bottoms
A free coupon is 8 box bottoms
An iPod Nano (8GB) is 125 box bottoms
There are more, this is just a sampling.
We really love the mixes. When Talli couldn't have wheat we would use the wheat-free mixes and everyone in the family ate them.
They have a rewards program called "CBK Rewards" where you send in the bottoms of the boxes with the UPC code for cool stuff.
A Cup-a-cake cupcake holder is 4 box bottoms
A free coupon is 8 box bottoms
An iPod Nano (8GB) is 125 box bottoms
There are more, this is just a sampling.
We really love the mixes. When Talli couldn't have wheat we would use the wheat-free mixes and everyone in the family ate them.
Wednesday, April 14, 2010
Needless IV lines & Oral Med Syringes
Multiple brands of needleless IV systems can accomidate oral med syringes into their hubs. With increasing use of needleless IV lines there is risk of mistakes in using oral med syringes in those lines. Here is an older article listing the problem: www.ismp.org/hazardalerts/inject.asp
Baxa Corp has several new oral med syringes that are incompatable with needleless IV lines. They also have syringes that are orange and purple to differentiate them from IV syringes.
Be aware in a hospital setting that oral med syringes (non-sterile) are not used in your child's IV line. You are their biggest advocate.
Baxa Corp has several new oral med syringes that are incompatable with needleless IV lines. They also have syringes that are orange and purple to differentiate them from IV syringes.
Be aware in a hospital setting that oral med syringes (non-sterile) are not used in your child's IV line. You are their biggest advocate.
Saturday, March 27, 2010
What my other child needs to see a specialist?!
Baby O had his 12 month check-up this past week. It was a bit delayed because M had an appointment the day we were suppose to go. He has always been on the smaller side, but he has fallen off the growth chart in length, weight, and the very critical head size. His pediatrician wanted him to see an endocrinologist. Since Talli sees one, I scheduled an appointment with him.
The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.
We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.
I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.
The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.
We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.
I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.
Monday, March 8, 2010
Psychological & Neuropsychological Testing
In November I attended PKU Illinois' annual meeting. During the meeting, Dr. Susan Waisbren made a presentation regarding psychological & neuropsychological testing in those with PKU. I did ask her if it applied to other disorders like Propionic Acidemia and she said it did.
My daughter has her first appoinement with a child psychiatrist to discuss learning issues and her anxiety around medical procedures. We also have a domain meeting in school next week as she is having her 3 year review.
The Genetics and Metabolism Psychology Network (GMPN) www.gmpsych.org lists reference articles and applicable testing in those with metabolic disorders. I found the information very helpful.
My daughter has her first appoinement with a child psychiatrist to discuss learning issues and her anxiety around medical procedures. We also have a domain meeting in school next week as she is having her 3 year review.
The Genetics and Metabolism Psychology Network (GMPN) www.gmpsych.org lists reference articles and applicable testing in those with metabolic disorders. I found the information very helpful.
Tuesday, March 2, 2010
Allergy friendly foods & Peanut Free Planet
While Talli does not eat much, having safe food around is always a concern. She is currently eating 100-200 calories a day, but since some she is sensitive enough to some allergens that being in the room with them or touching a contaminated surface and then biting her nail can cause a severe reaction we are always cautious.
Tree nuts are one of her most serve allergies, peanuts not so much, but peanut allergies tend to get worse with time. She is also on a very low protein diet, so that adds quite a bit of a complication. Cambrooke Foods is known in the metabolic community for good tasting low protein foods, however, and this is the big one for us, they make peanut and egg containing products, so we assume their whole product line is contaminated. Usually, when I call a low protein food vendor about allergies and cross contamination I hear in a quick raised voice, "Ma'am, we make foods for metabolic disorders not allergies." And my response is..., "My child has both." It has been far easier to get the protein counts on allergy friendly foods, some of which are very low protein than find safe low protein foods.
Here are a few companies that we enjoy:
Applied Nutrition- Low protein chocolate (only appealing to the low-protein crowd) that is allergy safe http://www.medicalfood.com/ They do have cute Easter shapes.
Ener-g- They do manufacturer with some nuts at some facilities, so a call to them is usually needed http://www.energ.com/ We all like their pretzels and Gourmet crackers.
CherryBrook Kitchen- Allergy friendly baking products- cake, cookie, pancake, and brownie mixes and ready made cookies. http://www.cherrybrookkitchen.com/ Save the box bottoms as you can redeem them for mixes, t-shirts, cupcake holders, and an ipod. Target carries some of these as does Jewel/Albertsons and Whole Foods.
Enjoy Life- cereal, cookies, granola bars, etc. Some items are too high in protein for us to use. http://www.enjoylifefoods.com/
Divvies- Cupcakes, popcorn, cookies and candy. http://www.divvies.com/ Amazon sometimes sells them as well. Our local peanut-free restaurant stocks them as does Disney World.
Ok, so the last one is Peanut Free Planet http://www.peanutfreeplanet.com/. We have ordered from them a few times. I am preparing for our annual Easter Egg Hunt that we host and was trying to come up with candies to put in the eggs. I also give out prizes as well. I was thrilled to find chocolate foil covered eggs to go into the plastic eggs as well as an inexpensive chocolate bunny to give out as a prize. So here is my order:
Amanda's Own Chocolate Baby Bunny $2.69/2oz (2, one for a prize and one for ODS's basket)
Comet MiniChick milk Chocolate Egg Bag $19.99/2.98lbs
Gimbal's Cherry Lovers 9 Cherry Favorites (for DH & DSs baskets)
Sunbutter $4.49/1lb Nearly the same taste as peanut butter and slightly better taste than Trader joe's brand
The chocolate is likely something Talli won't like the taste of because she is used to the low protein version, but at least it will be safe around her.
Happy Egg Hunting everyone!
Tree nuts are one of her most serve allergies, peanuts not so much, but peanut allergies tend to get worse with time. She is also on a very low protein diet, so that adds quite a bit of a complication. Cambrooke Foods is known in the metabolic community for good tasting low protein foods, however, and this is the big one for us, they make peanut and egg containing products, so we assume their whole product line is contaminated. Usually, when I call a low protein food vendor about allergies and cross contamination I hear in a quick raised voice, "Ma'am, we make foods for metabolic disorders not allergies." And my response is..., "My child has both." It has been far easier to get the protein counts on allergy friendly foods, some of which are very low protein than find safe low protein foods.
Here are a few companies that we enjoy:
Applied Nutrition- Low protein chocolate (only appealing to the low-protein crowd) that is allergy safe http://www.medicalfood.com/ They do have cute Easter shapes.
Ener-g- They do manufacturer with some nuts at some facilities, so a call to them is usually needed http://www.energ.com/ We all like their pretzels and Gourmet crackers.
CherryBrook Kitchen- Allergy friendly baking products- cake, cookie, pancake, and brownie mixes and ready made cookies. http://www.cherrybrookkitchen.com/ Save the box bottoms as you can redeem them for mixes, t-shirts, cupcake holders, and an ipod. Target carries some of these as does Jewel/Albertsons and Whole Foods.
Enjoy Life- cereal, cookies, granola bars, etc. Some items are too high in protein for us to use. http://www.enjoylifefoods.com/
Divvies- Cupcakes, popcorn, cookies and candy. http://www.divvies.com/ Amazon sometimes sells them as well. Our local peanut-free restaurant stocks them as does Disney World.
Ok, so the last one is Peanut Free Planet http://www.peanutfreeplanet.com/. We have ordered from them a few times. I am preparing for our annual Easter Egg Hunt that we host and was trying to come up with candies to put in the eggs. I also give out prizes as well. I was thrilled to find chocolate foil covered eggs to go into the plastic eggs as well as an inexpensive chocolate bunny to give out as a prize. So here is my order:
Amanda's Own Chocolate Baby Bunny $2.69/2oz (2, one for a prize and one for ODS's basket)
Comet MiniChick milk Chocolate Egg Bag $19.99/2.98lbs
Gimbal's Cherry Lovers 9 Cherry Favorites (for DH & DSs baskets)
Sunbutter $4.49/1lb Nearly the same taste as peanut butter and slightly better taste than Trader joe's brand
The chocolate is likely something Talli won't like the taste of because she is used to the low protein version, but at least it will be safe around her.
Happy Egg Hunting everyone!
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