Friday, February 25, 2011

OT Evaluation Results

Allie has been receiving OT services since August through the Wisconsin Birth to 3 Program.  OT comes to our house 2X /month to address sensory processing skills for increased age-level participation in play and daily routines. Allie was 33 months old when the testing was performed.

Here are her results - as they were typed in the report we received today.

Fine Motor results: "Allie's grasping and visual motor integration skills were assessed using the PDMS-2.  Her scores on this test indicated grasping skills at the 30 month level and visual motor skills at the 31 month level.

Strengths: "Allie uses either hand to manipulate objects and is able to bring both hands together at mid line for object manipulation.  She is able to place 3/3 formboard shapes.  She imitates circle and vertical and horizontal lines.  She stacks 9-10 blocks, aligns blocks to imitate building a 4 cube train and is able to imitate building a 3 cube bridge.  Allie uses an emerging 2 point grasp on small pellets.  She is able to use a scissors to cut across a strip of paper."

Challenges: "Allie is not yet using a consistent 2 point superior pincer grasp.  She attempts to string beads, but is not yet successful."

Sensory Processing: "Allie's mother completed the Infant Toddler Sensory Profile.  Allie's scores on this test indicate Typical Performance for Vestibular and Oral Sensory Processing.  Her scores for Visual Processing and Tactile Processing placed her in the Probably Difference category (more than others for Visual and less than others for Tactile).  Allie's score for Auditory Processing was in the Definite Difference range - more than others."

My interpretation of the results - Allie is doing great - she may be a month or two behind but I don't see that as a delay.  A couple more months of no vomiting and getting all of her nutrition and she'll be as smart as me - not sure if that is saying much - lol.

I am a little concerned about her auditory processing results but this isn't anything new.  We have questioned this about Allie for sometime and maybe now I just need to push a little harder for answers.  Allie has a lot going on right now in regards to testing.  She is getting evaluated by the birth to 3 program, Early Childhood program and also getting a full neuro-developmental evaluation by a private medical facility.  So, we'll see how closely all the evaluations come back at and we will make some decisions at that time.

We are waiting on Allie's evaluation results for her Speech Therapy through the birth to 3 program.  Arlene finished her evaluation on Monday and said that she potentially sees a delay in Allie's speech articulation.  Allie pronounced a lot of things incorrectly but she is making improvements with it.  We have knows all along Allie had a speech delay (hence the reason she's in therapy) so I'm not worried about it.  Allie is making great improvements in her speech, especially since when she was 18 months old she lost her ability to speak and was mute - due to malnutrition.  Plus, Allie is so strong willed she makes it a point that you understand what she wants and is asking for - she doesn't lack in that respect :)

Again, Allie is doing great.  We tube fed her in public today and I didn't even bring a bowl in case she vomited.  She has been vomit free for so long that I now feel comfortable feeding her in public.  It's a great feeling!!!!!

Hope everyone has a great weekend!

Here are some of Chloe's soccer pictures that I promised.  I'm so proud of her for getting out there and playing. 


Allie looking a little "shocked"

Little Miss Chloe on her first day of soccer practice.  I swear she does have shorts on!


Chloe got right out there and played with everyone else

Daddy & Chloe after practice

Team rally - the Comet's played great!


Thursday, February 24, 2011

Simply Struggling

Let's start with the fact that Allie is doing great.  She is handling every one of her feeds and sleeping through the night.  In addition to this, she is gaining weight - yes, gaining weight.  She hasn't vomited in weeks maybe even a month - overall she is just doing amazing!!!

Me - well I'm slowly sinking and drowning in the corn word.  I'm confused, concerned, uneducated, scared and possibly in denial.  Let's face it, if Allie truely does have a corn allergy we have a tough road ahead - yes, it's not life threatening but it's not going to be fun.  Our ENT told us diagnosing a child with a corn allergy is one of the worst allergy's he could diagnose for anyone. Corn is in everything and and when I say everything, I mean it.  Even some organic fruits and vegtables contain corn - simply becaue they are sprayed with citric acid.  Not all organic but trying to find the safe foods are proving to be challenging.

The part I'm really struggling with is trying to figure out if Allie is really allergic to corn and if so, how sensitive is she?  You may be wondering why I'm even second guessing this fact - in all reality her allergy patch testing showed a severe reaction to corn.  Okay - maybe I'm still in denial I'm not sure, but the fact is that I'm still not 100% convinced she's allergic to corn.  I contacted her ENT doctor this week and he refuses to re-test her - he said her reaction was so severe the first time it's not humane to put her through it again.  So - retesting is out of the question.  I talked to him again today and he said that if I wanted, we could put her back on corn and see how she does.....hmmm....that's a tough decision because do I really want to put her on corn if she's allergic to it and it makes her feel icky?

Within the past 2 months, we have made some huge changes with Allie in her diet, enteral food and feeding schedules.  We have seen great improvements in her also specificallly in the following areas:
1) Vomiting - she's been vomit free for weeks and maybe even a month or so.
2) Volume of feeds - Allie can now handle 5 oz of food with a 1 oz water flush - easy - not even gagging.
3) Behavior - in general, her behavior has improved dramatically.
4) Energy level has increased in the past month.

Here are some things we have changed in the past 2 months that may contribute to the changes I just listed:

1) She no longer wears her pump and backpack during the day for continuous feeds. This was very traumatic for her since she hated her backpack and felt like she couldn't move while wearing it.
2) The end of December, Allie was put back on her night time pump for continous feeds because of her vomiting.  We were unable to get 1000 calories into her during a 12 hour period so her night time feeds were needed.  Keep in mind, this is around the same time she went corn free. (or mostly corn free)
3) She is now on a 100% blenderized diet.  I make her food everyday and feed it to her through her feeding tube.  It's a known fact that real food is heavier in the stomach than the commerical enteral formula and therefore it stays in the stomach easier - reducing or eliminating vomiting. 
4) Allie is consuming much less corn than she did before.  I thought she was basically corn free but she's not - I am finding a lot of hidden corn in foods that I thought were safe. - She is going corn free due to her corn allergy which was diagnosed in December.
5) Allie is now gluten free - due to a gluten sensitivity which she was diagnosed with in December.
6) As of February, Allie is no longer on her night time pump for continous feeds because her volume tolerance has increased and we are able to get her calories requirements into her during the day (with bolus feedings) and then do one bolus feed at night.

These are some huge changes we made all at the same time.  So why has Allie's vomiting stopped and her behavior has gotten better????  That's the part I'm struggling with - I honestly don't know specifically why things have gotten so much better for her but I'm guessing it's because of one or more of the changes that I listed above.  Does it really matter what is making her feel better?  Isn't the important thing just that she is feeling better? 

I don't know how to put this without sounding shallow but I really would like to know if Allie is feeling better because she is consuming less corn products.  Having a corn allergy isn't easy - and it's consuming my life with research, research and more research.  Since Allie doesn't portray any symptoms when she does consume corn, it's extremely hard to know if she's even reacting at all to corn.  I'm by far NOT a lazy mom but if we are going corn free for no reason at all, I feel it's a lot of extra effort wasted that could be spent playing with the girls or something more family orientated.  Our life is already consumed with all of Allie's medical appointments, insurance issues, evaluations, therapy, feedings, monthly enteral supplies, etc - I hate to add more to the mix if it's not needed.  I might completely be in denial here so I'm not thinking straight.  Maybe you are reading this thinking I'm nuts - can't she see that being corn free is making a difference for Allie.  But I'm sitting here saying that it's very likely Allie's vomiting has stopped because she is now on a blenderized diet and not receiving commercial enteral formula.  I'm also saying that maybe her behavior is better because she has learned to accept her feedings without the pump and she is older and able to communicate her feelings better. 

I know deep down I want Allie's allergy patch test result for corn to be a false positive - I don't want her to be allergic to it.  Having a corn allergy sucks but it's not the end of the world.  I have come accross a new corn free forum and I am learning that there are very few foods which are safe for people with corn allergies.  All the new information is overwhelming and I feel like I'm sinking and not sure how to get out of the corn world.  Of course I want to do what is best for Allie but I also need some definite answers.

I talked to her ENT doctor and Dietician this morning.  The ENT told me to feel free to start introducing corn again and see if she starts vomiting or if her behavior changes.  I know this would give us answers but I don't want Allie to feel sick if the corn really is a problem.  Our Dietician is working on getting me a specialist with allergies in hopes that they could help me pick safe foods for Allie.  She suggested in the meantime to stop searching the internet and just continue to do what we are doing with Allie.  She has seen great progress in the past two months and she said even if Allie is allergic to corn and consuming corn, it's obviously okay for her in the amounts she's getting because she's doing GREAT!

I'm sorry if you think I'm nuts and off my rocker - I just may be but I'm off my rocker because I'm fighting for my little girl.  My answers might be right in front of my face and I'm just choosing not to see them - I don't know.  If I knew, I wouldn't be sitting here typing this post right now.  I just want to do what is best for Allie  but I'm not sure I know what is best.  Even her doctors don't know - I was originally told to avoid giving her corn, however if she really wants something with corn I could give it to her.  There is such a fine line with her corn allergy and getting her to eat like a normal child the doctors are even confused.  The doctors dont't believe her corn allergy is her underlying problem but how do we really know?  One thing I know for sure....removing corn from Allie's diet is not going to miraculously make her eat like a normal child.  It will take months or years to wean her off her tube - and it will take intense oral therapy.  Allie is at the point right now where she simply just asks for a tube feeding because she doesn't want to eat orally.

So, for now I'm just going to continue what I am doing and focus on getting Allie all of the nutrition she needs to grow and thrive.  She is gaining weight and happy.  She was 25.2 pounds this morning - almost up a pound in a month.  That's amazing considering she hadn't gained weight the preivious 3 months.  I will continue to work at getting Allie corn free but I refuse to stress over the smallest amounts of corn.  If Allie starts showing any type of reaction to the smallest amount she's getting, then I will change my focus. But for now, what we are doing is working great for Allie and after all that's all I strive for - getting and keeping Allie happy and healthy.

Look at this face - wouldn't you be off your rocking fighting for her too!

Please feel free to weigh in and voice your opinion as to why you think Allie is doing so much better.  But, please do not judge me - I am simply a mom doing the best I can :)


Monday, February 21, 2011

Could Allie have Aspergers Syndrome?

This mornings appointment with Dr. Mohrland at the Achieve Center went really well.  The meeting was basically for Matt and I to meet the doctor and answers questions about Allie.  It was our first time meeting the staff at the Achieve Center and everyone was great and very welcoming.  The reason Allie is being seen here is to rule out Asperger's Syndrome and other neurological delays.  Basically she is getting a full neuro-development assessment.  Since there are so many links between eating disorders and Autism, Dr. Brown thought it would be best to get Allie evaluated fully so we are not missing anything with her care.  Dr. Brown thought there was a "small" chance Allie could have Asperger's Syndrome which is a form of Autism - so he wanted to get Allie tested so it could be ruled out.

I am happy to report that Dr. Mohrland ruled out any form of Autism or Asperger's Syndrome today.  His exact words were, "Allie is to sly to have Asperger's".  Sly meaning crafty, tricksy and slick. He said that Allie knew exactly what she wanted and wasn't going to play any one's game.  Not sure if "sly" is a good thing but it sums up our little girl.  She most definitely has a mind of her own and knows how to play the field.

Dr. Mohrland has more testing for Allie which is scheduled for March 1st.  The next round of testing is her cognitive development.  Dr. Morlan thinks there will be a delay mostly due to her speech delay.  He said the two go hand in hand and most often if there a delay in one, the other is also delayed.  We know Allie has issues with listening and it's often hard to distinguish if she really doesn't understand what your asking or if she's just being stubborn and doesn't want to do what your asking.  Hopefully Dr. Mohrland's testing can shed some light on this issue for us.  It's been a long time battle that we are slowly winning but it's taken a lot of patience and if she really is having a hard time understanding or processing what we say, we want to get her the help she needs right away!

So, today's appointment was a success and I look forward to finishing up her testing so we can move on. Another interesting part of today was that Dr. Morlan has a son about Allie's age and he was recently diagnosed with a delayed reaction corn allergy (same as Allie).  It was nice talking about that too.  Allie was a challenging patient for Dr. Mohrland today - she gave him a run for his money.  Poor Dr. was trying everything to have Allie make eye contact with him and she just wouldn't do it.  For some reason, Allie is scared of men and today was no exception.  Little stinker - she eventually said "Thank you" after he gave her 2 stickers. :)

So, one appointment done and one more has been added.  Allie's hydrogen breath test was scheduled this morning and it's set for Monday, February 28th at 9:00.  The test is done at the hospital and it will take 1-4 hours.  Time for me to start researching so we know what to expect. 

Hope everyone is having a wonderful day. Here are some recent pictures of the girls making sugar cookies for Chloe's Valentine's day party at school - enjoy!












Sunday, February 20, 2011

Busy with appointments

Things here are going well.  Allie continues to tolerate all of her feedings and she is doing well being off the night time pump.  We are actually all getting sleep again.

The next couple weeks are going to be busy for Allie.  She has a lot of appointments and evaluations coming up.  Our schedule is looking something like this:

February 21st - 10:00 am - appointment with Dr. Morlan to discuss Allie's neuro-developmental evaluation.

February 22nd - 3:45 pm - speech therapy with Arlene

February 23rd - 9:15 am - Early Childhood evaluation (1st session)

March 1st - 9:00 am - appointment for her neuro-developmental evaluation (rule out Asperger's Syndrome and other issues)

March 2nd - 9:15 am - Early Childhood evaluation (2nd session)

March 2nd - 12:30 pm - speech therapy with Arlene

March 7th - 2:30 pm - appointment with Pediatrician to start bi-weekly weight checks and draw blood to start monitoring a full chem panel to make sure her blenderized feeds are meeting all of her nutritional needs.

March 8th - 9:30 am - occupational therapy with Sheena

March 8th - 4:00 pm - speech therapy with Arlene

March 9th - 9:20 am - IEP Test results with early childhood.  This is where we will find out if she qualifies for Early Childhood.

March 15th - LEAVE FOR FLORIDA VACATION!!!

Lots happening in the next couple weeks and it's possible we might be adding the hydrogen breath test to this busy schedule.  It seems as if all of Allie's testing and appointments are falling so close together but most of these evaluations are either by the State for the state assisted programs or ordered by Dr. Brown to rule out any type of neurological delays.  So, I feel all of these appointments are very important and I hate to cancel any of them.  Allie loves to be tested with doing stuff so I think she's going to enjoy most of these appointments - let's hope!

After all of this testing, we are leaving for Florida for our annual vacation.  We take two weeks, drive and do a lot of sight seeing on the way down.  The girls love it and it's two weeks jam packed with fun.  This year for Chloe's birthday, we are eating lunch with the princesses in Cinderella's Castle.  The girls can hardly wait.

So, a few weeks of running around like crazy will be finished off with two weeks full of fun in Florida.  It will be worth it!!!

I'll update on Allie's progress as we finished appointments.  We are hoping to get some final answers on her neurological status.  Please pray that she masters all of the testing and there is no sign of a neurological delay!

On a side note: Chloe started soccer today and loved it.  She did great out there running around.  I will post some pictures as soon as I get get them off my camera.

For now, here are a couple pictures of the girls when they teeny tiny babies - enjoy! They look so much alike!

Chloe when she was a 3 days old
Chloe all bundled up and heading home from the hospital

Allie when she was 3 days old

Allie all bundled and heading home from the hospital

Chloe welcoming little sister Allie home!


Saturday, February 19, 2011

Summary of Dentist Day

Allie's dentist appointment was a success - in the fact that she opened her mouth slightly for the dentist :)

Dr. Maggie was very nice and respected the fact that Allie hates doctors and screams at almost every visit.  They didn't push Allie to do anything she didn't want to do - which I thought was great because I really didn't want her first dentist appointment to be traumatic.  They tried brushing her teeth but Allie's gag reflux was severe today so they stopped right away.  After that, Dr. Maggie counted her teeth and checked them for plaque buildup. 

Dr. Maggie confirmed that Allie's teeth look great and there is no reason from her standpoint that Allie's breath should be smelling like poo.  Allie doesn't have any plaque buildup on her teeth and she was very happy with how much brushing we get in even with Allie's severe gagging.  Dr. Maggie is obviously concerned about the amount of vomiting Allie has done in the past.  She said that excessive vomiting can lead to tooth decay, however she doesn't see any signs of it right now.  She wants us back every 6 months for a checkup - unless Allie's vomiting stays a way completely.

So, what does this mean besides Allie has clean teeth?  We still don't know why her breath smells like poo so often.  This means we go back to Dr. Brown and he will likely perform a hydrogen breath test.  I'm not exactly sure what this test all entails but I do know that it's non-invasive and it won't hurt Allie at all.  I am waiting to hear back from Dr. Brown as to when he would like to do this testing.  I prefer to get it done ASAP - why wait around when something is smelling so bad :)  This test is checking for a bacterial overgrowth in her intestines.  I know there is a actual name for it but I don't know it at the moment.  I need to do some research about it but I was waiting until after her dentist appointment.

So, for all the parents out there with tube fed kids that are experiencing poo breath with your little one, we didn't get any answers today.  Dr. Maggie did tell me that sometimes children who don't eat orally can get a lot of plaque build-up on their teeth which in turn sometimes smells like poo.  Apparently if the child doesn't eat, there is nothing working it's way around the mouth all day and the plaque and bacteria just keeps building up.  So, it might be worth a trip to the dentist to have your little one checked for plaque build-up but in our case, this isn't the situation.  I'll keep you updated with exactly what tests Dr. Brown would like to perform.  Hopefully we can get some answers on this and we can help everyone else that is having the same problem.

Hope everyone has a wonderful weekend!

Couldn't get any pictures of Allie at the dentist because she sat in my lap the whole time - but here are a couple pictures of the girls outside - enjoy!

Having fun while dad pulls us in the sled

Chloe loves to shovel

Allie gave up on shoveling and decided to just rest in the snow

Friday, February 18, 2011

Dentist Day

Today is Allie's big dentist day.  It's her first time going to the dentist and she's quite excited.  I know the excitement will fade as soon as she has to sit in the chair, but I'm thrilled she's excited for now.  The reason for Allie's dentist appointment today is because of her breath.  As I mentioned before, Allie's breath smells like poo a lot of the time and we are trying to figure out why.  If the dentist cannot find anything wrong with her teeth or anything in her mouth, then our GI doctor will run some testing to figure out what's going on. But for today, it's dentist day.

Here is Allie telling you about her big day......enjoy!


video

Couldn't leave Chloe out.....here is a video of her talking about school today - enjoy!

video


Wednesday, February 16, 2011

Pump Problems

About a week and a half ago, I was putting Allie to bed and got her all hooked up to her night time feeding pump.  For about a month now, she keeps thinking that she cannot move (sit up, roll over, etc) while hooked up to her pump, so this particular night, she was crying that she wanted to roll over.  I picked her up and rolled her over - what I didn't know is that I was also pulling on her tubing which was tugging real hard on her Mic-key button.  Allie was screaming and I just thought she was being crabby.  Then she started screaming, "my button".  I looked and her button was almost pulled out.  I freaked, she freaked and everything was down hill from there.

Allie is generally very cautious with her button.  The procedure to remove her previous peg-g tube was traumatizing for her and her perception of her mic-key button has never been the same.  So, now with me almost pulling Allie's button out, she is even more traumatized. 

Since that night I traumatized her, she hasn't slept.  When I say, hasn't slept, I mean it.  She has been up 15  or more times a night just screaming it hurts.  We all know there is no lettering a tube fed child cry it out - you just never know if she's tangled in her tubing, or if her button is being pulled, etc. So 15 times a night, Matt or I would go in and check on her and 99.9% of the time, she was fine, just screaming because she was scared her button would hurt.

On Saturday night, I was so sleep deprived, I got up at 3:00 and just disconnected Allie from her pump - I couldn't take it anymore.  We had been getting up with her every 20 minutes or so - it was crazy.  Plus, it had been like this for over a week and we needed sleep!  After disconnecting Allie that night, she slept till 8:00 the next morning - it was great. 

I decided 3 nights ago, we would do a trial and see if we could figure out a way to get Allie off the night time pump.  Keep in mind we did this about 4 months ago and it didn't work.  Allie ended up vomiting most of her daytime feeds because her tolerance was so low and her tummy couldn't handle all of the liquid food in a 12 hour period.  We even tried her wearing her pump and backpack during the day so she was continuously fed - all of this was tried just so we could avoid the night time pump. The backpack and pump during the day turned out to be a complete nightmare and Allie hated it and put up a full blown fight every time we had to hook her up.  So 3 months ago, we caved and put her back on the night time pump.

Well, we are at the point again where she needs to get off the night time pump.  My bright idea - we will give her a bolus feed once or twice throughout the night and keep her off the pump. We have done this for 3 nights now and it's worked great. Last night we gave Allie 4 oz of blenderized food with a 1 oz flush and she handled it just great.  She doesn't like to be woken up for her feeding but she's adjusting very well.  The first night she screamed at me the whole time I fed her, the second night she cried when I touched her to hook her up and last night she rolled over for me to hook her up then went back to sleep....amazing!!!

So, I am happy to report that for the past 3 nights, Allie has slept and slept and slept!!!  It's amazing what decent sleep will do for a person - Allie and I are much happier!!!!!

My princesses on Valentine's Day

Silly girls!


Monday, February 14, 2011

Thank You

Thank you to everyone that supported Feeding Tube Awareness Week.  It was an amazing week and our small community of feeding tube parents have reached thousands and thousands of people and spread positive awareness.  So, thank you and please know that your support means so much to me.  When Allie gets old enough to understand, she will be amazed by how many of family and friends supported her during this past week!!!!

Here is a link to us on News line 9 news here in Wausau.  We were telling our story to help promote awareness.  It aired last Friday.  http://www.waow.com/Global/story.asp?S=14016137

I am sad to see this week come to an end, however for Allie and all other children with feeding tubes, I am committed to continue spreading positive awareness.

I would like to thank everyone that contacted me by seeing my guest blog on Food Allergy Living, News line 9 clip or by my own blog this week.  Many people had comments, suggestions or simply wanted to share their story with me and I really appreciate everyone reaching out.  I have met a lot of new families and everyone has been very kind - so thank you, I appreciate you emailing me and offering information, suggestions, and support.

As for Allie, she is doing great.  She is just getting over strep throat, laryngitis, and the croup - all at the same time.  I tell ya, when this little one gets sick, she goes all out.  Antibiotics worked great for her this time and she recovered quickly.

We are continuing to do blenderized feeds during the day and she is handling everything very well.  We are currently up to 4.5 oz of blenderized food with a 1 oz water flush.  This is 5.5 total oz per bolus feed - amazing!!!  This is the most Allie's little tummy has ever been able to handle.  She hasn't vomited in quite some time (besides when she was sick because all her coughing led to vomiting).  This week, we increase her feeds to 5 oz of blenderized food with a 1 oz water flush.  We'll see how she handles it but I'm not anticipating any problems. 

So, overall, things here in the Berndt house are going well.  Busy and some days it feels like all I do is tube feed Allie. She is fed at least every 3 hours and then she gets water fed through her tube in between feeds - it's exhausting to keep up with it all - but if Allie can handle it so can this mom!!!

Chloe doing her beads for good behavior

Allie concentrating super hard on stringing her beads

Proud girl showing off her beads for good behavior


Thursday, February 10, 2011

Day 5 - Engaging Friends and Family

I would like to thank everyone for your support so far in our first annual Feeding Tube Awareness Week.  We have reached out to a lot of people and I know we are making a huge impact.  It's been an amazing week for me and I'm very proud to be able to spread positive awareness and most of all, I'm proud of our little Allie - she supports her feeding tube like a champ!!!

Today we are focusing on "Engaging friends and family". 

The topic today is: GO AHEAD AND ASK ME! -  What do you want to know about tube feeding that you have been afraid or uncomfortable asking?

I love this topic because I know many of you have questions but feel silly asking.  Just know that there is NO silly question and nothing you ask will offend me.  There is a lot that us tubie parents can teach when it comes to feeding our child so here we are.....waiting for you to ask questions.   You can can ask questions like these!

1) Can Allie feel the food going directly into her tummy?
2) Does she give you cues when she feels her tummy is too full?
3) Is Allie's feeding tube painful for her?
4) Will Allie have her tube forever?
5) What do you feed Allie through her tube?

Of course, these are just sample questions but if you want the answers, go ahead and ask!!!  I promise I will answer every question.  Don't be shy and if you want to remain anonymous, you can always leave a comment here and select "anonymous" instead of your name.  You can also email me at berndt@charter.net

Thanks in advance to everyone who asks question.....after all feeding tubes are quite interesting!!!!

Allie trying to surf while trying on her new swimsuit!


Wednesday, February 9, 2011

Day 4 - Feeding Tube Awareness Week

Today is a big day for all of us tubie parents.  It's a day when we need your support and I promise it will not take much effort on your part.

Today is CALL TO ACTION - emailing Sesame Street

Today's topic is: How would you like to raise awareness of tube feeding?

I'll start with my part....It's easy - just simply talking to people about tube feeding helps raise awareness.  Me talking to people, leads to more people talking and more people becoming aware of feeding tubes. Sharing Allie's story is a great way to spread awareness.  Of course keeping Allie's blog updated is a great way for me to share our life's story with a tube fed child but it also reaches beyond that.  This blog helps raise awareness (especially this week) and I have seen first hand how it has help people understand feeding tubes and what it's like to live with a child who is tube fed.  I am proud to keep this blog updated and if it helps just 1 person better understand feeding tubes, then I consider it a success. 

Due to Allie's severe corn allergy and gluten sensitivity and the fact that she has a feeding tube, I was asked to be a guest blogger for "Food Allergy Living". You can check out my guest blog right here:

http://www.foodallergyliving.net/nutrition-specialist-column/food-allergy-awareness/feeding-tube-awareness-week-allies-story/

Being a guest blogger is another way that I am helping to spread positive awareness!!!
________________________________________________

Now, on to the second part.  This is where I need your help.  With Feeding Tube Awareness Week in full swing, it is time once again to contact Sesame Street.  They have so far refused our efforts to get a tube fed child on the show. They do not understand enough about tube feeding to see how it might fit into the show. So, we need to explain to them just how they can do it. We are getting close, but we still need to fight for the cause!

Sometime today, I am asking you to please write a letter to Sesame Street and send it to them through the following link:  Make sure to mark "food" as your category.

http://www.sesameworkshop.org/inside/contact

To make it easy we have provided a letter below that you can copy and send to Sesame Street.  I promise this will not take more than a minute and you will be making many tubie kids very happy (and their parents).  So, what do you say......can you please help us today and contact Sesame Street.  After all, ALL CHILDREN SHOULD FEEL LIKE THEY BELONG ON SESAME STREET!  Thank you.

Sample letter for Sesame Street:
There are tens of thousands of tube fed children in the US. While Sesame Street has done so much for diversity, there has never been a tube fed child featured. Tube feeding is merely another way for children to eat when they are medically unable to eat enough to thrive & grow. Sesame Street has explained trachs as helping Christopher Reeve breathe.
Children are tube fed for myriad reasons, but one of the simplest for children to understand is food allergy/intolerance's. Some children are tube fed while they discover which foods are safe for them to eat. It can be done in such a way that explains that there are some children who can’t eat like there are some children who can’t hear, or walk or see. Tube fed children deserve to be on Sesame Street, too.
To date, we have more than 4200 people who have supported the cause ‘Let’s Get a Tube Fed Child on Sesame Street!’ on causes.com, with more joining each day. All children should feel like they belong on Sesame Street.


When sending your letter to Sesame Street today or talking about feeding tubes with your friends, please remember that you are helping little Allie feel more accepted by her peers!  Just because she eats differently than most people does not mean that she is weird or freakish - remember this is just a new form of normal!

If you have time, let me know that you have supported us by sending a letter to Sesame Street!!!  Thank you - the Berndt's





Tuesday, February 8, 2011

Day 3 - Feeding Tube Awareness Week

Wow, day 3 already - this week is going bye too fast!!!

Our focus today is addressing misconceptions about feeding tubes.  Until Allie, I didn't know anything about tube feeding and honestly, I didn't even know it was an option for Allie until well into her medical journey.

Topic for today: What do you want people to know about tube feeding?

It's funny - out of all the topics so far, I am struggling with this one.  Honestly, one thing comes to mind quickly but it is not what I would have thought to blog about.

My thoughts go directly to other parents who are struggling with the fact that their child doesn't eat enough orally.  We have been down that road and it's a hard road to travel alone.  One of the most natural things in life is to eat and when your child refuses to the point of starvation, it's scary.  Allie's feeding tube was a last resort, however my personal opinion is that a feeding tube doesn't always have to be a last resort.  For Allie, we waited so long to get her tube, only because we were uneducated about it and didn't know it was an option.  Allie was so malnourished her brain stopped developing and she was loosing abilities she had used just days before.  She got to the point where she didn't make a sound or say anything, she wasn't walking straight and she was continually loosing her balance and falling.  This was the extreme - but it only got this far because we were uneducated about feeding tubes and for some reason the doctors weren't suggesting she get one.

So, for all you parents out there that are struggling with feeding your child orally and your doctor has mentioned a feeding tube, please know that having a child with a feeding tube is okay.  It doesn't mean that your child will be tube fed for the rest of their life.  For many children, having a tubie is temporary until they learn to eat enough to grow and thrive on their own.   Keep in mind there are many medical reasons that children refuse to eat enough to grow and thrive and in many cases (as in ours) figuring that medical reason out can take years. 

If you would like to become more knowledgeable about feeding tubes, please check out the following link: http://www.feedingtubeawareneess.com/  This website offers great information that many of your doctors will not tell you.  The information on this website is provided by a group of parents who have a child with a feeding tube.

I am NOT saying that every child that doesn't eat should get a feeding tube - you have to make sure it's right for you and your child.  You have to make sure you are 100% supportive of the decision - after all, it's a big decision you are making for you child. I just want you to know that a feeding tube isn't a bad or scary thing it actually is a life saver for many little one's.  In our case, I truly believe we waited too long to get Allie her tube and I live with that regret everyday.

I don't want to make light of the feeding tube - it's a serious medical decision and it comes along with many possible complications.  I just want people to be more aware of them and better educated because honestly the doctors don't do a great job with explaining the pros and cons of the feeding tube.  Remember, doctors don't have a vested interested in your child like you do.  I learnt that the hard way!


I will not lie - it's not always easy having a tube fed child. There are down sides to it but when you compare to the alternative........your child not developing properly because or malnourishment or your child is starving to death, the feeding tube isn't a bad thing at all! 

My little Allie is happy and healthy because of her feeding tube!!!!


Without Allie's tube, she wouldn't be able to have those chubby cheeks and such a cute smile!



Monday, February 7, 2011

Day 2 - Feeding Tube Awareness Week

We are going strong and spreading a lot of positive awareness about feeding tubes!!!

Today we focus on the before the tube and after the tube.  The topic is: What is the most positive benefit your child has received because of tube feeding?

For Allie - the most positive benefit she has received because of tube feeding is LIFE!.  I know that Allie would have starved to death if she didn't have a feeding tube.  For some reason, Allie doesn't recognize or enjoy food like the rest of us.  She has no interest in it and due to her age, she doesn't understand that she needs food and water to survive. 

Our relationship with her tube is a love hate relationship.  We love it because it's keeping her alive however we hate it because it's not ideal.  No child should have to receive nutrition directly into their stomach or intestines to survive.  However, Allie having a feeding tube is much much much better than the alternative.  So, we are thankful for her tube and thankful we have access to this wonderful medical technology.  Without this technology, our lives would be much different today.

Here are our before and after pictures of Allie.


This is Allie at 20 months old - 1 week before she received her tube.  She was still wearing 6-9 month cloths.

This is Allie after having her tube for 3 1/2 months - check out her chubby cheeks!



Sunday, February 6, 2011

Day 1 - Feeding Tube Awareness Week

I am so happy to be part of Feeding Tube Awareness Week.  A lot of parents and adults with feeding tubes are working together to help spread positive awareness about tube feeding. 

Our goal for this week is to spread awareness and reach as many people as possible.  We want you to know that a feeding tube is a life saving medical device and many of our children would not be here today if it weren't for their feeding tube. Little Allie is alive because of her tube.

It's video launch day - check out our Feeding Tube Awareness video at the bottom of this post.

The topic for today is - Why does your child have a feeding tube?

Our story starts out simple, Allie has a feeding tube because she does not eat enough orally to gain or even maintain her weight.  Since birth, Allie hasn't eaten enough to grow and thrive.  At a year old, we started seeing specialist at the Children's Hospital of Wisconsin and they immediately starting to run tests to try and figure out why our Allie wouldn't eat orally.  They ran tests for months and everything was coming back normal.  At one point Allie was so malnourished that she stopped talking completely and she had such bad muscle deterioration she couldn't walk straight and was continually falling down.  On September 26th, 2009, she had a brain MRI because our doctor thought it was possible she had a slow growing brain tumor.  Thankfully, Allie's MRI was clear and at this point, the doctors realized that Allie's overall health was very poor and something needed to be done or she would starve to death.  Allie was put on appetite enhancer medication and we enrolled her in a week long outpatient intense feeding intervention at CHW.  Neither the appetite enhancers or the feeding intervention worked for her and she continued to avoid food.  In December 2009, I stood up and took a stand.  I requested Allie get a feeding tube.  She was slipping away from us mentally and physically.  Our little girl was starving to death.

Once her tube was placed and all complications were taken care of, Allie started growing like every other 2 year old.  Due to her significant speech delay, we enrolled her in speech therapy.  She still receives speech therapy today but has made great strides and is working her way towards catching up with her peers.

As of today, we still do not know why Allie doesn't eat orally.  There is a chance we may never know and that is okay.  The most important thing is that Allie is healthy and luckily, we are able to keep her healthy thanks to her feeding tube.

Thank you to everyone who is supporting Feeding Tube Awareness Week and our family.  Your support means so much to all of us!!!

Check out all the amazing children with feeding tubes..................




Saturday, February 5, 2011

What are the chances?????

3 Little Princesses


What are the chances that 3 tubie kids can get together and play?  Well, today that is exactly what happened.  For the first time ever, Allie was able to meet someone just like her - a tubie friend!  We met two wonderful families today in Oshkosh, WI and our girls got to meet for the first time. 

We met Joanne Chenery and her daughter Evelyn (5 years old) and Amy Walker and her daughter Karsyn (2 1/2 years old).  It was so wonderful to see so many mic-key buttons and the girls were proud of them!!  All 3 girls were excited that the other's had tubes just like them.  Evelyn's face was priceless when Allie showed her her button and Karsyn loved watching Allie get a bolus feeding. 

We met at McDonald's, yes I know of all places to meet, we choose a restaurant.  However, it worked out perfect.  They had a really nice indoor playground and the kids got to run and have fun.  Us mom's (and Matt) were able to chat about our kids and share very similar stories between the 3 of us.  We have all seen doctors at the Children's Hospital of Wisconsin and we have seen many of the same specialist.  Like so many other tubie kids, our girls still do not have a final diagnosis.

Overall the morning was just perfect and I thank both of these families for taking the time and effort it took to meet up.  I look forward to many tubie play dates in the future!!!

Thank you Joanne, Evelyn, Amy and Karsyn for the wonderful morning.  We were able to snap a couple pictures of the girls.  In addition, I included a video of Allie talking about her new friends - enjoy!!

Look we all have feeding tubes!!!


Wow - you look just like me!


Left to right
Allie (2 1/2 ) - Karsyn (2 1/2) - Evelyn (5)


Jodi & Allie / Amy & Karsyn / Joanne & Evelyn
Mom's and their tubies!


Here is Allie's video for her new friends:
video