She's still eating!

Well this weekend was pretty quite we lost an hour due to the time change and it's now close to 10 pm and Ashley just went to sleep way later then normal. She still eating and managing to have 4 meals a day 8am, noon, 4pm and 8pm. I'm so thrilled. Yesterday she had pie after dinner i was so surprised she liked it as it was lemon meringue pie 90 cal/ 2 tablespoons. Lucky she had some or I would have finished the whole thing myself the boys were not interested in it. I guess it wasn't chocolaty enough for them. My husband only had one small piece and it's all gone now so baby and I enjoyed it all. I've eating right along side Ashley and cooking with more butter, cheese and cream then ever before. Oh well at least I'm eating for two. My oldest did tell me today that not only was my belly growing so was my back side. I'm normally thin even after my third so I'm not really worried. However i probably never cooked with some many calories before. If Ashley gains weight it's all worth it.

Amazing Feeding Progress

Ashley is eating!!!! I can't believe it my little girl got her g-tube inserted early April 2007 and has been getting all her diet from nutren formula every since. Ashley would occasional have a bite or two of food but she was basically full all the time she was getting 3 cans a day for the first year on the tube and had a lot of trouble keeping that down and then 4 cans of formula a day for the last year. She was just full all the time as she was being feed around the clock. I thought getting her off the tube would involve some very serious intervention. It was just something i couldn't image happening anytime soon. My little girl just has a way of surprising me and I'm so thrilled.

She had stomach flu just recently and had nothing but Pedialyte for 5 days she lost weight and her stomach could only handle her formula pumped in at a very slow rate while her GI tract recovered. This left her hungry so I started to feed her easy foods like banana, rice apples, cream of wheat. She was hungry and has been eating 4 meals a day!! Yippee. So far so good I haven't been giving her any nutren just water or apple juice for hydration in her tube she doing great so far. I think she is much more ready to handle the different texture of food now then she was ever before. She really enjoys cream of wheat, red river cereal, bananas, avocado, brown beans, egg yolk, rice, broccoli and even canned pasta. She open to try anything whatever we are eating at dinner she seems to enjoy. Everything she eats is topped with butter, mayo, cheese, cream or oil to punch up the calories. It's a yummy diet.

She even feeds her self cheetos those are 10 cals each she eats about 8 or so at one time. I'm so proud of her progress it's just been 10 days but things are going well. I'm also giving her 3 oz water 4 times a day in between meals via her tube and 3 or 4 oz apple juice via the tube at night. So far so good i hope she can keep this up and we don't go back to using the tube for anything but meds, vitamins and water. It's very early yet just 8 days of eating but I'm feeling really positive about things.

If anyone else is working on this I found these two books helpful: Poor Eaters - Helping children who refuse to eat by Joel Machet
Just Take a Bite by Lori Ernsperger

Here's pictures of her eating away....

A little snack of cheetos before bed

Notice the empty plate! She been eating everything on her plate.


Just two weeks ago i asked her OT how to stop her from playing with her plate at dinner she was always dumping it and that stopped as soon as she was more interested in the food she hasn't done it since.

Eating!

Ashley enjoyed a whole egg yoke and a little pancake for breakfast this morning. This is a whole lot of food for her. She is getting less g-tube feeding as her system is still recovering from the stomach flu she had last week. That has the desired effect of giving her an appetite something she doesn't have when she is normally being g-tube feed 1100 calories a day.

The same thing happened last year after she had vomit fest 2008 for 8 long days she start eating but i slowly increased her g-tube feeds and she eventually didn't want to eat anymore. I'm going to see if i can prevent this mistake this year as I'd love to see her take up eating.

Drinking!!!

Ashley made some really nice progress today she managed to drink 5 oz of water from her sippy cup. This is real progress for her and I was thrilled that the cup was empty. She didn't dump it out either just keep taking sip after sip while on a walk to pick up her brothers after school. She been drinking for a little while now but usually just an 1 oz or maybe 2 but today she finished all 5 oz.

The girl can eat !!!

Today Ashley made me so happy following physio therapy this morning we were invited to a good friends to visit with her and her sweet baby. While we were there i was enjoying a yummy toasted bagel with homemade strawberry jam. I offered Ashley some and she really enjoyed it. She was really chewing and enjoying pieces of bagel i gave her piece 1" by 1/2" pieces that definitely needed to be chewed and she managed no problem and opened her mouth for one bite after another she ate at least 10 bites. Mommy was very impressed. I really see her eating progressing and just had to share.

Small steps with feeding

Ashley been making some progress in exploring finger food lately last night she actually ate carrots she got one whole baby carrot (well cooked) into her month .. i panicked a little ..normally she just licks them but now she's feeling comfortable enough to place things in her month. She managed to chew and swallow it nicely. This morning she picked up half's blueberries and tried hard to get them in her month. She's really not interested in being spoon feed so it's super that she wants to feed herself. It's not many calories but it's a developmental inchstone at least.. that I'm really pleased with.

Her registered dietician visited today and in light of her endocrine concerns with her high thyroid. We stopped the reduce calorie plan and now I'm going to give her 1000 calories in the tube and she can top up by eating as much as she is interested in feeding herself. I saw that coming and had already reverted back to 1000 calories a day when I received that call from endocrine .. it doesn't take to long be able predict some of the advice that is coming your way.

Tomorrow Ashley's off to Sickkids for a visit with the GI Clinic she will have her mic-key button changed (i hope that won't hurt too much) following that she is having her annual echocardiogram and the cardiologist is meeting with us to review the results. They are checking up on her pulmonary hypertension she has had this test a number of times before and it's always scary to get the results I've been hoping to hear that it is resolved for as long as i can remember. Hopefully Ashley and I will be celebrating that tomorrow.

Can it get any busier

June is coming to a close and this month must have been one of the busiest I can remember for appointments, therapy sessions, and events. I felt overwhelmed a number of times I have to admit. It went something like this. A whopping 26 appointments this month alone

• 10 for physiotherapy (CME therapy)
• 4 for Augmentative communication,
• 4 for play therapy
• 2 for occupational therapy
• 2 dietitian and feeding therapist
• 1 Early intervention & 2 with potential new nursery school
• 1 SPOC (Single plan of care meeting) basically a team meeting with all therapists, case manager and service co-ordinator.
• 2 medical appointments

Not to mention we also attended a graduation, wedding, parent conference and parent advisory council for the Children Treatment Network. We reduced Ashley's (tube feed) calories and convinced her to do some eating and drinking. Ashley also progressed with her toilet training routine and manages most #2 and a few #1 on the potty! And I never forgot about the boys.

Ashley was a real sport to get through all this. Next month I'm setting more time aside to breathe before potentially starting back to work again in August.

Super Mom

Now the good news

Ashley really wants to drink from a cup .. she enjoyed milk again today about 10 sips!!! YIPPEE I know that doesn't sound like much but for Ashley it's fantastic.

Now i think I'll shop for bibs with big pockets to catch as much spilage possible.

Milk

Reduce Tube Feeding in order to increase appetite and desire to eat. Slow and painful process this is and it requires lots of patience and anixety meds (recommended for mommies attempting this). I love to get Ashley eating again but in order to do this she has to be hungry and considering she has been fed a round the clock since she was born she might not even recognize the feeling I've been told. I've ordered as many books on this topic as I can find. And I'm excited to start feeding her again i hope she doesn't hold out too long .. i plan to cook up as much yummy food as i can and let her play and hopefully lick smell and ultimately eat something.











At dinner she was reaching for my glass of milk. She enjoyed a slip and made a little mess as well. But we all cheered when she drank some it was great. This would be neater with water but that won't have any calories now would it. Sippy cups also less messy but t0 difficult to use.