Day #6

Allie had a much better day today.  As I sit back and look at the last couple days, I cannot believe that I am actually watching Allie consume so many calories throughout the days.  This is something I have been dreaming about for 3 years.  I know Allie isn't consuming enough calories to gain weight yet but she is eating more than I ever dreamed possible at this point. 

If it were not for my "motherly instinct" I would still be feeding Allie 1000 calories a day through her feeding tube and not allowing her to feel hungry.  It almost makes me upset because I'm wondering how long I've been feeding her through her tube and I haven't really needed to.  I'm not saying she still doesn' need her feeding tube, I'm just saying she doesn't have to be so dependent on it like we thought. 

Stopping Allie's tube feedings cold turkey was a crazy decision I made.  My motherly instinct was telling me it was time - at least try it and see what happens.  All of our previous doctors at Children's Hospital of Wisconsin told us time and time again never to stop cold turkey - it was bad for the child.  However, after tons of research I had made my decision to try to wean Allie on my own.  Honestly, I was tired of doctors, nurses, specialist, etc always telling me what to do with Allie, however nobody could figure out why she didn't want to eat.  Allie has seen more doctors, specialist, and therapist than I care to remember and quite frankly I was getting tired of it.  Some of them helped but nobody could give us answers.  I know Allie's medical days are not over, however taking this little break from doctors and doing things according to my "motherly instinct" is proving to be a very promising step.

I would like to make one thing clear - Allie is in no harm with this tube weaning attempt.  I know most parents don't cut feeds cold turkey but I felt very comfortable doing this.  I talked to Allie's GI doctor and he was in agreement to give this a try at home.  We are making progress slowly as I continue to learn more and more about tube weaning and continue to do research on it everyday.   I have spent the last 3 years researching and doing everything possible for Allie and her medical issues, I can assure you I would never do anything now to jeopardize how far we have come.

Allie had another good calorie intake day yesterday.  Here is her food breakdown

25 cal - cereal
60 cal - Eo28 Splash
80 cal - applesauce
70 cal - piece of cheese
225 cal - 1/2 of a bologne sandwich
30 cal - E028 Splash
120 cal - E028 Splash
20 cal - couple bites of hamburger
160 cal - chocolate milk
25 cal - ice cream
815 - TOTAL CALORIES

Once again, I am totally amazed at how many calories Allie is consuming.  I know this isn't easy for her and at times it's down right frustrating for both of us but we are staying a float and that's what matters. 

This is Allie a couple days before we started her tube weaning

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Day #5 - not so good

So, day #5 wasn't a good day for Allie's eating.  Seems as if whatever I offered her, she refused to eat.  She didn't even want to drink her milk.  This is the first day so far that Allie has not consumed a decent amount of calories.  I was nervous all day because I simply could not get her to eat.  However, today is a new day and she is doing great.  Actually she has consumed more calories already today than she did the whole day yesterday. 

Here is Allie's food breakdown yesterday:

10 cal - cereal
120 cal - Eo28 Splash
70 cal - Go-gurt
40 ca - banana
5 cal - bite of chicken nugget
60 cal - Eo28 Splash
20 cal - hot dog
30 cal - gummies
10 cal - fruit
365 - TOTAL CALORIES

I'm very excited to see Allie eating so many calories.  I'm so glad I made the decision to stop her tube feeds.  I know we still have a log road and just because she is eating right now doesn't mean she will continue to.  I know I will be counting her calories for a long time.  One thing I do know for sure though is that Allie no longer needs to be 99% tube dependent.  She may still need the tube but she is proving she can handle eating orally.

I'm relieved to see Allie eating more today and I'm hoping it keeps up.  This wean is like an emotional roller coaster for me and I never know when a new twist or turn will come.  However, I'm more than pleased with how everything is going and I'm so proud of little Allie!

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Day #4

So, yesterday was day 4 of Allie's first attempt to wean her off the feeding tube.  I have to say this is going much better than I anticipated.  I also have to say this is much more work than I anticipated.  Of course I am not just stopping tube feedings and hoping Allie will eat.  This wean entails stopping Allie's tube feedings but also being diligent and adamant in trying to get food into Allie's mouth (and having her swallow it).  We do not sit around the supper table as a family and relax, this wean is a constant battle and there is no relaxation around the table or anytime it comes to food.  I am very proud of how well Allie is doing.  She is eating more than I ever expected. 

It seems as if Allie likes to drink most of her calories.  The only liquid besides water she consumes is her elemental formula Eo28 Splash which is 30 calories per oz.  Allie drinks her Eo28 Splash out of a sippy cup with a straw and it's a comfort item for her.  I'm still not convinced that Allie drinks because she is thirsty, it's simply a comfort item and she drinks her Eo28 Splash when we are driving in the car or when she is watching cartoons.  Besides that, Allie rarely drinks at all.  She can and will drink out of a regular cup but she will only consumes maybe 1 tsp of the liquid. She does like apple juice but when I give it to her in a regular cup, she only drinks a tiny tiny bit. 

We were camping over the weekend so it was hard to track Allie's food since I wasn't the only one feeding her.  She ate okay but not nearly as well as Thursday (first day of the wean).  Over the weekend, Allie drank a lot of her Eo28 Splash while riding in the cart behind my bike - she likes to drink her milk when she's moving.  She rarely ate a meal for us but did enjoy a good portion of a corn dog and some chicken nuggets so that was wonderful.

Yesterday Allie ate okay - not quite as good as before.  Here is the breakdown of her oral intake:

10 cal - Cereal
120 cal - Eo28 Splash
70 cal - gummies
20 cal - taco & cheese roll-up
30 cal - chicken finger & french fries with ranch
330 cal - Eo28 Splash throughout the day (after breakfast)
580 - TOTAL CALORIES

I tried so hard to get Allie to eat more of her taco & cheese roll-up but she was done.  We went to Arby's for supper and Allie was excited to get chicken fingers but when she got the food, she would barely take a bite.  It's still VERY frustrating watching my child refuse to eat when I know she has to be hungry!!

So far today, Allie's calorie consumption is low but I'm hoping it picks up this afternoon.  We are now letting her watch TV (from the kitchen table) while she eats her meals.  We are hoping this keeps her entertained at the table a little bit longer so she stays and eats with us.  It's working a little bit but not as well as I was hoping.  I know watching TV while you eat is not a good idea but right now we are trying anything possible to get Allie to eat.

So far, Allie has showed no reactions to stopping her tube feedings and like I mentioned in my first post, it doesn't seem to have phased Allie that she is no longer getting feedings.  She still asks for them (when she doesn't want to eat) but I simply tell her that she no longer gets them.  Her energy level has remained high so that is a great sign.  I have given her some water shots in her tube throughout the day to make sure she stays hydrated.  All and all, things are going wonderful.  For me, it seems extremely strange not to be giving her feedings - but it's definitely something I could get used to :)

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Day #1

Today was the first day that we with held all of Allie's tube feedings.  I was nervous because I wasn't sure how she was going to respond or if it would be a total shock to her body.  But I'm happy to report that it didn't even phase little Allie.  When she asked for a tube feeding (instead of eating), I simply told her that she isn't getting feeds right now and that she will have to eat so she has energy to play. 

I sat down with Allie this morning (and Chloe) and explained to Allie that it's time for her to start eating by her mouth now.  I explained that eating is fun and enjoyable and necessary to live.  I tried to explain the importance of eating in terms that a 3 year old can understand, however it was very hard.  Not sure if Allie understood much of it but throughout the day, I reminded her that she now needs to eat.  She kept asking me if Ms. Anna (her feeding therapist) was going to be calling to check up on her.  I told her no but we could tell Ms. Anna if you start eating like a big girl.

So, for today - here is Allie's oral intake breakdown.  This is my recollection since I didn't track absolutely everything to the T today.  I wasn't going to stop tube feedings till tomorrow but since she was doing so well with eating today, I decided to drop them today instead. 

120 cal - Eo28 Splash formula
80 cal - My little pony gummies
160 cal - 1/2 of egg salad sandwich (loaded with egg salad) she ate this at therapy
30 cal - part of string cheese - she ate this at therapy
70 cal - G0-gurt (had to be Sponge bob)
180 cal - 1/2 of a double stack from Wendy's (go Allie)  This took her all night to eat but at least I got it into her!
240 cal - Eo28 Splash (milk she drank throughout the day, after breakfast)
860 TOTAL CALORIES

Amazing!!  I don't think Allie has ever consumed that many calories in a day.  This was an exceptional day for her, no doubt.  Today was draining because it was a lot of work getting all those calories into her.  There is no stopping trying to get her to eat and it's a constant, "here take a couple more bites".  It's a constant battle to keep her in her chair and to keep her interested in her food.  There is no doubt this attempt to wean Allie from the tube is going to be one of the hardest things I've done in my life.

Allie had a quick appointment this afternoon with her GI doctor.  Her weight was 27.4 pounds - WOW!!  I am still amazed at that.  I have to keep in mind that she weighed her with shoes on and she was holding her blanket - but still that's a big weight increase.  I of course will be tracking her weight at home also, I'm one of those mom's that is obsessed about every aspect of Allie's medical care. 

Today was a good day but we'll see what tomorrow brings.  We leave to go camping for the weekend but I will be tracking Allie's food & water intake very closely.  Everyone eats more than normal when their camping right?????  I'm hoping this holds true for littl Allie too!

I will update on Allie's progress when we get back from camping.

One more thing I would like to point out, Allie's calorie goal per day is 1000 - 1100. 

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Hold That Tube Feeding!

I'm not sure how to write this without sounding totally off my rocker but here I go....

I have been doing A LOT of thinking lately in regards to Allie and her eating habits or lack there of.  I now she can eat because she does when she chooses to.  Her feeding therapy is twice a week and each session is different, sometimes she eats and sometimes she doesn't.  We know Allie has no food aversions and to the best of our knowledge, no medical reason to not eat.

Almost all of her doctors believe she was born with a medical condition that caused her not to eat and now it's a learned behavior because it's all she's known since birth.  In addition to that original medical condition, Allie vomited almost every tub feeding for a full year of her life. (October 2009 - January 2011).  There is no wonder our little Allie doesn't enjoy eating - she has vomited more in her short life than the average person  does in a lifetime.

Allie has now been vomit free since January 2011 and her oral intake has increased.  Her oral intake is still very low and very sporadic. Some days she eats well and other days she doesn't eat anything.   I don't think its fair of us to make Allie eat orally when she's full all the time with tube feedings.  To be honest, I feel like I'm banging my head against the wall every time I try to force her to eat.  I know she's not hungry because of her tube feeds, I know her stomach is smaller than the typical 3 year old and her feedings keep her full because she's getting a feeding every 3 hours.  As my father-in-law would say, "it's a no brainer".  Of course Allie doesn't want to eat.

So, with all my thinking lately, I decided I am going to stop Allie's tube feedings and see what happens.  Keep in mind Allie does eat orally every day - just small amounts.  She also drinks her elemental formula orally through her sippy cup so I know she's getting great nutrition from her formula.  Allie is currently drinking 8-12 oz daily which is a huge increase for her. 

I spoke to Allie's GI doctor this morning and he thinks trying this tube wean is a good idea.  We meet him this afternoon for a quick weight and height check.  He is going to monitor Allie closely and if she starts loosing weight or height, we need to start her feeds up right away.  I know cutting feeds cold turkey isn't the "typical" way to wean a child from the tube but nothing with Allie has been "typical" - even from the start.

I'm not setting my hopes too high and quite honestly, I won't be surprised if this tube wean fails.  However, I'm going to give it my best shot and with the help of our feeding therapist, it just might work.  Only time will tell but like I said a couple times before, if we don't try it we won't know if it will work.  I will not be discouraged or upset if Allie continues to refuse to eat, I know it's not easy for her to eat and she has been struggling with this for 3 years.  This is going to be a long road, heck its already been a long 3 years but we are in it for the long haul and even the detours.

I will keep you updated on Allie's progress and how her oral intake is without any tube feedings.  I will be checking her weight daily and I plan to still use her tube for hydration purposes.  Of course, my biggest fear is Allie getting dehydrated - everything spirals downwards from there.  So, during this trial wean, we will keep Allie healthy and happy and hopefully gaining weight. This is going to be an interesting couple weeks but I know no matter what the outcome, it will never be a failure!!!!!

If your child has been weaned from the tube, I would love to hear your story.  Tips that worked great or things that didn't work out so well.  You can leave me a message here or email me at berndt@charter.net 

Thanks!

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Ohhhhh what to do....

Allie had in-home feeding therapy again today and it was anything but successful.  The session was suppose to last 1 hour but due to Allie refusing to eat, the session only lasted 20 minutes.  Allie started out by eating a little chocolate pudding and then 1 bite of a pizza pocket.  After that, she was done and wanting nothing to do with lunch.  Allie actually told Ms. Anna (her therapist) she was going to go to bed and she would see her later.  Ms. Anna went into Allie's room and carried her back to the table.  From that point on, it was a constant fight to get Allie to take even 1 more bite. 

After 10 more minutes of trying to get Allie to eat, Ms. Anna said, "Allie, if your not going to eat, I'm going home.  I come here to help you eat and if you won't eat, then I'm leaving".  Allie didn't mind, she didn't want to eat anyway.  So, that was  how our feeding session went today - a complete failure.

Part of me is happy that Allie acts like this for Ms. Anna because this is typical behavior that we deal with every single day and at every meal time.  This gives Ms. Anna the opportunity to see all of Allie's bad behavior.  Another part of me feels sad when I see Allie acting like this for Ms. Anna because it's just a strong reminder of how hard it's going to be to get Allie to eat like a typical 3 year old.

I constantly go back in forth with myself trying to figure out if now is the right time to try weaning Allie off the tube.  Do I have the strength, patience and endurance that its going to take to make Allie eat like a typical 3 year old?  Do I wait until she's older and understands better or do we continue to try and get her to eat since it's a known fact that the longer a child is tube fed the harder it is to get them off the tube.  I'm torn because so far, my efforts to get Allie to eat are failing.  Yes, she will eat at times but it's on her terms and her terms only.  It's a power trip for Allie and I don't know if I have it in me right now to fight that battle.

There are two very different approaches we can take when it comes to Allie's oral eating.....

1) We go back to simply offering Allie food for every meal.  If she chooses not to eat, we are okay with that.  She will receive a tube feeding that will provide all the nutrition she needs. 

2) We continue to try to get Allie to eat orally at every meal.  This doesn't mean offering her food and if she refuses it's okay.  There is no okay in refusing.  We don't force feed her but we do everything in our power to get food into her mouth.

I have to admit that #1 is easier on us, however it's mentally exhausting having to tube feed her every 3 hours.  Tube feeding is saving her life but it's also frustrating when you have a child that has every capability to eat orally but simply refuses. 

Option #2 is also mentally and physically exhausting.  Trying to get a child like Allie to eat is no easy task.  I know that people who have children that enjoy eating cannot even begin to comprehend what we go through.  But take my word for it - it's not fun and there is no magic food that my child will eat.  I have tried everything to get Allie to eat enough calories in a day but she just cannot/will not do it.  So, having a food battle 3 or more times a day is tiring and stressful on the whole family.  It's worse than you can imagine and if you don't believe me, I welcome you into my house anytime any day to share the experience of having a child who refuses to eat.

So, neither option is perfect and that's okay.  I just need to figure out what is best for us as a family. 

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In Home Feeding Therapy Recap

Today Allie's feeding therapist came to the house to observe & help Allie eat lunch. I chose for Allie to eat a peanut butter & jelly sandwich because that is NOT one of her favorite foods.  I also chose cottage cheese, which Allie loves.

When Ms. Anna arrived, Allie had to show her her bedroom and then we went right into eating.  The girls sat where they always sit for lunch and I played the radio like I usually do.  I wanted to keep the setting basically the same as our normal routine so Ms. Anna could see how our lunches go.

I don't even know how to explain it but Allie ate.  She ate 1/2 a peanut butter & jelly sandwich and 1/2 cup of cottage cheese.  She would never eat that much for me or Matt - she would simply take 1-2 bites then tell me she wants a tube feeding.  I'm getting very frustrated with the fact that Allie eats for Ms. Anna but not for me.  I do the same things that Ms. Anna does but Allie just doesn't listen.  I know it's not just me, my dad has tried and tried and tried to get Allie to eat and she simply refuses.  He has been trying for 3 years and honestly he's tried just as hard as Matt and I.

Seeing Allie eat is wonderful yet it leaves me wondering why in the world she eats so well for Ms. Anna and not us????  I know she can eat and she can handle a good amount of food so part of me wants to strap her in a seat and make her eat.  However, I know that making meal time a bad experience will only make things worse.  But I feel like I'm loosing this battle and I need to gain control.  I'm beginning to think there is something wrong with me and that's the reason i cannot get Allie to eat.  I don't know - it's simply frustrating.

Last night for supper, Allie requested pizza.  So, I grilled chicken for us and cooked a pizza for her.  I thought since she was really requesting something specific, she would eat.  I cut up a whole (small) piece and of course, Allie ate 2 bites and I couldn't keep her at the table.  I tried putting her back on her chair and she just kicked and screamed and requested a tube feeding.  It's like that for almost every meal with Allie - she takes 1-2 bites and she's done.  I just don't get it.

I have noticed through Allie's eating issues, if she is going to eat a meal during the day, it's lunch.  So, now I'm thinking that we might have to have Ms. Anna come to our house for breakfast or supper so she can observe one of those meals.  Allie rarely eats breakfast and it's even more rare for her to eat a decent supper.  I'm also thinking it might be better to have Ms. Anna over as a guest instead of a therapist so she can simply sit across from the table and observe all of Allie's behavior during the meal.  There are so many things I want to try and so many different ideas to try new things.  One thing I know for sure is I cannot get this girl to eat on my own.  I need professional help and as the days go on, I'm thinking I'm going to need all the professional help I can get.

So, to little Ms. Allie - thank you for making me look like a complete goof today.  I constantly say, Allie does not eat like a typical child, she simply refuses most of the time".  Yet today, you ate in front of Ms. Anna and you only got up from your chair about 5 times.  You ate more for lunch today (at home) than I have ever seen you eat.  Way to go Allie - I'm proud of you but next time, please show Ms. Anna your true colors because this momma knows your putting on a show - lol.

Ms. Anna has agreed to come to the house again for a feeding session.  I'm hoping we can get at least 1 in-home feeding session in a week or even 2 :)

Don't get me wrong - I'm rejoicing that Allie is eating and if I have to bring Ms. Anna with us everywhere, I will do it (if she's okay with that - haha)

The girls mini golfing - Chloe's field trip for preschool

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Feeding Therapy going Home Style

Allie continues to have feeding therapy twice a week for an hour each time.  Her therapy is going well and Allie is actually eating.  Today I took the easy way out and took Happy Meals for eating therapy.  Allie chose a cheese hamburger, french fries and chocolate milk.  She ate well during therapy today and consumed 2/3 of her cheeseburger, 2 fries with ketchup and 1/2 of her chocolate milk.  That's a huge meal for little miss Allie.  We figured she consumed a little over 200 calories or so. 

Allie continues to eat well at therapy but refuses to eat much at home.  She does eat some meals but other times, I cannot even get her to the table to sit with us.  I'm getting more and more frustrated with her eating habits because I know she can eat she is just being stubborn and choosing not to eat.  She's very comfortable getting tube feedings and most of the time just asks for a tube feeding. 

She has created an eating pattern at therapy where she sits well for 10-15 minutes and eats but after that, she is done eating.  During those 10-15 minutes, Allie is not able to consume enough food to call it a meal.  She chews & swallows real slow.  Also she starts pocketing food after 15 minutes of eating.  It seems like the longer we make her sit at the table and eat, the worse her eating habits are for the rest of the time.  15 minutes in the chair is about Allie's max, however since her eating is so slow, she needs to sit for longer to consume a good amount of calories.  Our therapist is thinking that Allie is getting full very quickly and that is why she doesn't eat much.  She noticed that Allie will try all and any foods and take a couple bites but after that, she doesn't want to eat.  That is how it's been since Allie was born.  She has always tried foods but never ate more than a couple bites.

Anyway, getting Allie to eat is proving to be a challenge for me.  I just cannot get her to eat at home much at all.  Don't get me wrong, there are times when Allie will eat pretty well but there are more times than not that she simply refuses to eat at all. 

So, our therapist has agreed to come to the house for a home feeding session.  She will be coming tomorrow at 11:30 to observe and help me feed Allie.  This is great because this is truly what I believe we need.  Of course our therapist has never done "in-home" feeding and our insurance doesn't cover it but she's going to bill it as a "clinic session".  I would eventually like her to come to the house for all feeding sessions but I'm not sure if that will ever be possible.  This is a good start though and I'm very excited about it.  Having someone come to the house to feed Allie will allow them to fully understand what we are dealing with day in and day out.  This isn't a controlled environment - this is going to be real life with real distractions.  Tomorrow's lunch will be interesting :)

I'm anxious for tomorrow's in-home feeding session - I'll let you know how it goes!

Silly Allie

Chloe showing off her necklace

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Drama at Feeding Therapy

Today marks the worst day yet at Allie's feeding therapy.  Allie is getting used to Ms. Anna and is starting to not listen to her demands.  Right from the start, we decided to put Allie in a small room with very few distractions.  We were attempting to improve Allie's intake but not bribe her with toys, etc.  There were a couple toys on a small table in the corner of the room and Allie continued to get up and look at the toys.  Ms. Anna told Allie that if she doesn't sit in her chair like a big girl, she was taking them out of the room.  Well, of course Allie didn't listen so the toys were removed from the room.  This was Allie's first meltdown.

There is also a mirror in the room attached to the wall.  Allie continued to get out of her chair and dance in front of the mirror or just talk to herself in the mirror.  Allie was using every technique and anything she could to distract her/us from eating her food.  Ms. Anna decided to cover the mirror with a big floor mat so that Allie couldn't see herself in it anymore.  The floor mat had stripes on it with different colors.  Allie thought that was just as cool and started counting the stripes and telling us all the colors.

It seemed that no matter what we tried and how hard we tried to remove distractions, Allie was always one step ahead of us.  I think next week, we will have to use a room with nothing in it except a table, chairs and our food. 

At this point, Allie had eaten 1.5 chicken nuggets and 2 bites of yogurt.  That is not nearly enough calories for a meal for her.  Allie's goal was to finish her yogurt, eat 1.5 more chicken nuggets and attempt to take bites of string cheese and hopefully drink a little of her E028 Splash milk.  At this point, Allie was simply refusing to eat anything more so we let Chloe leave the room to go in the play room - we were hoping this would motivate Allie to eat.  It didn't - it just made Allie more mad.  All through the meal, Allie was coughing and making herself gag.  We would ignore her behavior and reward her when she stopped gagging.  Keep in mind, Allie has no gagging issues, she just forces herself to do it to get attention.

Allie's previous Occupational Therapist stopped in the room to say, "Hi".  Allie was very excited to see her and I figured it was a perfect opportunity to bribe Allie with some puzzles (since Sheena would bring Allie's puzzles every week and Allie loved it).  We told Allie that if she ate 1.5 more chicken nuggets, Sheena would get her some puzzles.  Allie took about 3 more bites and that was all.  At this point, Allie was screaming and wanting to sit on my lap.  I told Allie she could sit on my lap if she finished her last chicken nuggets.  Well, instead of eating her nugget, Allie kept gagging herself until she threw up her whole meal.  I was so frustrated!!!  Allie hasn't thrown up since January and the fact that she made herself throw up made me even more upset.  Allie didn't care that she threw up - she simply let me wipe her face and she was fine.  Typical behavior for Allie. 

After that, we closed the session and Allie wasn't aloud to play with any toys.  I carried her out of the therapy room and we left.  Allie was very upset that Chloe got to play with toys today but she didn't. 

This is typical eating behavior for Allie.  Along with not wanting to eat and trying to distract everyone in every possible way, she is a pro at pocketing food, spitting out partially chewed food and tearing food instead of biting it.  There is no doubt Allie has some very bad behaviors when it comes to eating orally.  The thing that is frustrating is that she can eat so nicely if she chooses to!

After leaving therapy, we ran to Target for a few things.  Allie had her first "public" full meltdown.  We were in line checking out (there were long lines).  Allie was being very mean to Chloe so I picked up Allie (to remove her from the situation) and she was mad.  She kicked and screamed for 10 minutes while we were waiting in line.  I was so upset at Allie from what she pulled off at feeding therapy that this momma was not giving into her.  I felt bad for all the people waiting to check out and even the people on the other side of the store because Allie was screaming loud.  She even gagged herself but I knew her stomach was empty from vomiting at therapy so I was safe in that department. 

Allie continued to scream and when we exited the store, we stood outside for another 10 minutes while Allie continued to scream.  At this point, I had put her back int he cart and she crawled out and demanded I carry her.  I would not pick her up - she either had to get in the cart or hold my hand in the parking lot.  Let's just say tons of people were staring at us and i was more than embarrassed, however I was so determined to NOT GIVE IN.

Eventually, Allie took my hand and we walked to the car.  There was a lady standing by her car who had been in the checkout by us. She looked at me and say, "good for you for not giving in.  I have been in that situation and when so many people are staring and talking about your child, it's just easier to give in, but I'm proud of you for standing your ground".  That was very nice to hear because there was no doubt, we were THAT mother and child in the store today. 

As soon as we got home, I tucked Allie into bed and she slept from 1:00 to 5:00.  Guess she just needed a nap because she had a very exhausting morning.  Praying tomorrow is a better day for little Ms. Allie Rae!

This is Allie napping on her little rocking chair a couple days ago. She refused to take a nap and when I checked on her in the playroom, she was clonked out - my stubborn little princess!

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Allie Update

Things in the Berndt house are going well.  Allie continues with her feeding therapy twice a week and her speech therapy once a week.  Her speech is coming along nicely but she still has a long way to go.  Allie can say 6-8 word sentences, however it can be very hard to understand what she is saying at times.  Chloe still understands her the best and I find myself asking Chloe, "What did Allie say".  As long as one of us knows what she wants, we are set.

I removed milk products from Allie's diet 3 weeks ago and we have seen no change in her.  Not one little thing has changed so I guess that's good.  I just started introducing milk again so I'll watch her closely to see if she has any type of reaction. 

Since allowing Allie to eat corn products again, her oral intake has increased.  Her oral intake it far from a typical 3 year old, however it's an increase and we are proud of her.  I have taken it upon myself to reduce her tube feedings to see if she will feel hungry without the feeds.  She has eaten slightly more with the reduced tube feeds but not nearly enough.  I don't want to reduce her feeds too much because she really has no room to lose weight.  She's already a peanut!

No decisions have been made yet in regards to the feeding clinics.  I am patiently waiting to hear back from both facilities.  I am pretty convinced that Allie needs a feeding clinic in order to eat more orally.  She is making great progress but she still has a very long way to go.  I'll keep you updated as to what we decide with the feeding clinic.

Here are a couple pictures of the girls in their kitty pool this weekend......

Allie always on the move

Chloe always ready with a smile

My girls

Chloe loved jumping into the pool

Yup, this is how it ended - Allie mad about something.  Armed crossed and attitude in full swing!

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