Tuesday, May 24, 2011

Inpatient Feeding Clinic

After Allie's feeding session today, my original thoughts about putting Allie through an inpatient feeding clinic were reassured.  Allie's therapist does not feel that her therapy is enough for Allie.  She suggests that we get Allie enrolled in a feeding clinic sooner rather than later.

Of course the goal of the feeding clinic is going to be to wean Allie off the tube but I am not setting our goals too high or making unrealistic expectations with our first wean attempt.  I have been in contact with the Children's Hospital of Wisconsin and talked to Dr. Fisher (our previous doctor) about their 2 week inpatient program.  Their program focuses on behavior and it will be similar to the outpatient feeding intervention we went through in October 2009.  Since we stopped receiving medical services at the Children's Hospital of Wisconsin a year ago, (our choice to leave)  we will be set up with a new team of doctors (feeding team) and Allie will need to be evaluated and approved for the feeding clinic.  I'm hesitant to go back there but we will not be moving her primary care there it will strictly be for the feeding clinic.

I have also been in contact with Marcus Wilken.  He is originally from Australia but is now collaborating in the US with Spectrum Pediatrics in Virgina.  He seems interested in Allie's case and I'm waiting to get more detailed information from the owner of Spectrum Pediatrics.  I'm very interested in their program because Marcus actually comes to our home and helps wean Allie off the tube.  He stays as long as needed and his program is based on the fact that every child feels hunger.

I have looked into other clinics as well but right now, I feel that these are our two best choices.  I won't be making a decision until I finish getting information from both places.  Like I said previously, I'm not setting our expectations too high and if our first attempt at weaning Allie from the tube doesn't work, that is okay.  I know Allie is very stubborn and strong willed and I think she will put up a very good fight or just give in.  Not sure what path she will take but we won't know until we try.

The decision to send Allie to an inpatient feeding program is going to be a hard decision.  I know these feeding clinics can be brutal on children especially strong willed children.  I have spent my whole life protecting her and once she's at the inpatient feeding clinic, I have to follow their rules.  When Allie went through the outpatient feeding intervention at Children's in October 2009, it was one of the hardest things on me.  Allie was not force fed but damn near close to it.  Her intervention at that time was outpatient and it was a week long so I know this next intervention is going to be even more intense.  I know a feeding intervention is exactly what Allie "might" need in order to eat orally. I also know a feeding intervention could take a turn for the worse and her behavior and feeding habits go downhill even more.  Big decisions we need to make and I'm not sure how we are going to know what the right decision is.....

Look daddy is teaching the girls how to wear makeup - lol. 

Yes, Allie is really this tan or orangish color (not sure why but her carotene level is very elevated)

No, Chloe is not a ghost she just looks very pale in this picture.

Monday, May 23, 2011

Today's Weight Check

Allie had a weight check this afternoon and everything went well.  She weighed 26.3 pounds.  That's a 6 oz gain since May 2nd - yeah Allie.  

Looking back, Allie hadn't gained any weight from August 2010 to December 2010.  She remained 24 pounds for a long time.  Part of the reason was all her vomiting and our continuous struggle to get enough calories into her.  Her weight gain since January is just another reminder of how well she is doing on a blenderized diet.

No matter how miraculous her weight gain is now, I'm still concerned about her height.  Her height isn't inching up at all and I'm hoping one day she just have a growing spurt.  I just keep telling myself she cannot continue to gain weight but not height or she'll be waddling around :)  I'm not stressing about anything right now - Allie looks great and I know one day she will outgrow her 2T cloths - lol!

Here are my two princesses.......

Friday, May 20, 2011

Thoughts on Feeding Clinic

"You can't hit a home run unless you step up to the plate. You can't catch fish unless you put your line in the water. You can't reach your goals if you don't try." Kathy Seligman

I wish I knew why Allie doesn't eat.  I don't know why she chooses to avoid food or why she doesn't feel hungry like most people do.  As a mom, these are hard things to understand, eating is suppose to be a simple & natural thing to do.  It's a tough road to go down when your child chooses not to eat (or in some cases they have a medical condition that doesn't allow them to eat).   

The quote above is what I am currently feeling.   I know Allie is doing wonderful right now and she is finally gaining weight with her tube feedings and continues to be vomit free.    She is finally at a point where I can breath easy and let Allie just be Allie.  However, there is also a part of me that knows the longer a child is tube fed, the harder it is to wean them from the tube. 

I'm reaching a point where I'm thinking a feeding clinic/intervention is the next step for Allie. There is no medical reason that Allie doesn't eat (at least the doctors cannot diagnose anything).  She has ever ability to eat but chooses not to.  She can eat a normal meal and she does every once in a while.  I'm starting to think that Allie truly doesn't know anything besides "not eating".  It's how she grew up and now she has to learn how to eat.  I know that if we keep feeding Allie every 3 hours with her feeding tube she will not want to eat because she is always full - I get that.  But, just reducing her tube feeding will not necessarily make her feel hungry.  Honestly, Allie probably doesn't even know what hunger feels like.  She MIGHT feel it but she probably doesn't know what it is and what she is suppose to do when she feels it.  I don't know but one thing I know is Allie will need a trained professional who will work with her for 3 or more meals a day. 

Right now I'm trying to decide if it's the right time to proceed with a feeding clinic/intervention.  Of course it takes several months to get into any inpatient feeding program so my goal of taking the summer off is still on target.  I want Allie to just be Allie and enjoy the summer with no doctors or needles.  I have lots of thinking to do and decisions to make - I know there is no right or wrong answer.  Nothing with Allie is black and white.  I have learned to accept that and I just need to follow my motherly instinct.

I'm back to thinking it would be very nice to know all the answers in this big world of unknowns :)  One thing I do know is this beautiful face below is my inspiration and it pushes me to continue searching for answers, treatments, clinics, etc.  Anything that will help little Allie in the long run.

Monday, May 16, 2011

Coo Coo for Corn

It has been a little over a month that Allie has been consuming corn products for her oral challenge.  She first started eating corn products orally and then I started adding corn products into her blenderized food.  Within this past month, we have seen slight changes in Allie but for the better.  Her behavior has remained consistent (strong willed & stubborn), her sleeping has improved, still vomit free and her oral intake has improved.  Not sure if allowing her to eat corn again has anything to do with her sleeping better and eating more but those are both improvements so we'll take them.

I have made the decision to take cows milk out of Allie's blenderized food.  I am using Silk soy milk as the substitute.  According to one of Allie's allergy tests, she could be allergic to milk but they aren't sure.  It has been almost a week that I have taken cows milk out of her blends and so far we haven't seen any change.  We will try this for 3 weeks to see if we see any difference in her.  If nothing changes, we will assume that Allie is not allergic to milk.  Most likely she isn't but having 1 positive allergy test (and 3 negative) makes me question it.

Allie continues to do great with all her feedings and she's gaining weight slow and steady.  She will be going for a weight check again in a week or so.  I have been weighing her on my home scale and it shows she's over 26 pounds - that's a huge accomplishment for her.    Things are going well with all of her feedings, it's hard to imagine the days of constant vomiting with her feeds.  I feel so sorry for the parents that continue to struggle with their child vomiting because of tube feedings.  Out of everything Allie has been through, dealing with a year of constant vomiting had to be the worst part.  Her and I were both extremely miserable and no matter what we tried, the vomit never stopped - that is, until we tried the blenderized diet. 

Thanks again for following Allie's progress.  We continue with speech therapy and feeding therapy.  3 days a week of therapy is getting old but I know it could be worse.  To try and keep Allie's life "normal", she is going to start dance lessons this summer and if she likes it, she will continue with it in the fall.  My guess is she going to love it - she's quite the little dancer.  She would always come with me to Chloe's dance class and Allie would learn the dances just as well as everyone else.  When it was Chloe's dance review, I couldn't keep Allie out of the isle in the theatre, she danced almost the whole show.  So, to say I think she's going to love dance class is kind of an understatement.

Here is a picture of our silly girls.....

Monday, May 9, 2011

Adrenal Gland Results

I received a call late last week in regards to Allie's latest blood work.  Dr. Brown (GI) requested we get her adrenal gland checked out because Allie looks very tan.  The results came in and here are the results:

ACTH - 28 (normal range 5-46)
Cortisone - 18 (normal range 6-26)
Carotene - 435 (normal range 60-200)
Adrenal Gland - normal

So, everything looked good except her carotene level.  She is looking tan because she's turning orange.  According to the doctor if someone eats too many carrots, they have high carotene levels and their skin starting turning an orangish tint.  Okay - I'm not feeding Allie a ton of orange stuff so I'm not sure why she's turning orange.  She gets some carrots and some sweet potatoes periodically in her blends but nothing much at all.  The nurse told me on the phone last week that maybe Allie's body is processing her blenderized diet differently than normal.  I'm not sure but I'm waiting to hear back from her Dietician to get her take on it.  I know absolutely nothing about carotene levels so I'll have to start researching it.

Allie continues to do great.  She is continuing to consume corn products orally and through her blends and she is having absolutely no reactions.  I'm beginning to draw the conclusion that her patch allergy testing was a false positive.  One more week on corn products and then our ENT will determine if she is allergic or not.  Unless something dramatically changes this next week, I'm guessing she's not allergic to corn. 

Hope all of you fabulous mom's out there had a wonderful and blessed Mother's Day!  Thanks for checking in on little Miss Allie Rae!

Friday, May 6, 2011

Feeding Therapy

We are blessed with having another great therapist for Allie.  Allie started feeding therapy this week and so far things are going wonderful.  Allie is eating for her therapist (Miss. Anna).  Of course Allie is not eating huge amounts but it's a start. 

I am learning new things to try in order to get Allie to eat.  Allie has been eating more lately, however I have to feed her.  She is starting to refuse to eat unless I feed her with a spoon.  It's a weird thing but she does actually let me feed her. In therapy, Miss. Anna is incorporating play with taking bites of food.  I bring Allie's food in for each session and I bring a favorite and a non-favorite food.  Of course they always start with a non-favorite.  Allie is allowed to play with toys but when Miss. Anna says it's time to take a bite, Allie has to take a bite.  So far this is working great.   Of course this is just a start and eventually they will work with Allie sitting in a chair and eating at a table like most people do :)

Miss. Anna's goal right now is to make eating pleasurable for Allie.  She makes Allie take a bite but then distracts her with a toy.  Since we don't know why Allie doesn't eat in the first place, this tactic is good in case Allie is having any negative or food aversions.  Since Allie is playing while eating, she forgets the negative experience she's had with food.  In time, we are hoping that Allie starts to enjoy food and will want to eat more and more.

I know Miss. Anna has only seen Allie a couple times but she is very impressed with her eating.  Allie has issues with chewing, her jaw is very weak and it takes her a long time to eat and swallow something.  Of course this is to be expected for a child who barely eats orally.  Anyway, Miss Anna told me today that Allie is definitely ready to eat and she doesn't feel it will take long to get her eating more and more.  That was music to my ears - I just about screamed out loud with excitement.

I do have to say that something has changed in Allie the last couple weeks.  It seems that since we are allowing her to eat corn products again, her oral intake has increased a good amount.  I'm praying this isn't just a phase but only time will tell.  Grandpa Ray and Matt watched Allie eat a little over half of a double stack hamburger from Wendy's earlier this week.  A month ago, Allie would have only taken 1-2 bites of it.  I asked Miss. Anna what could be causing such an increased in Allie's oral intake.  She seems to think it might be the fact that Allie was on such a strict diet with her corn allergy that now that she's aloud to eat it again, it's increased her drive and hunger to eat.  Maybe Allie is enjoying the taste of food.  We don't really know but whatever it is, we'll take it. 

I am going to start documenting what Allie is eating daily.  I have to make sure she continues to get all of her calories in each day.  Since Allie is showing interest in food now, it was recommended that we reduce her tube feedings so she has a chance to feel hungry.  This was one of my biggest concerns this past year.  We are keeping her full with her tube feedings so why would she want to eat orally?  If we eliminate a feeding or two each day, it might give Allie a chance to feel hungry.  I have to keep in mind that Allie's not at a high enough weight to loose any and most of the time when children start eating orally and tube feedings are reduced, they need to be able to loose at least 5 pounds.  We aren't quite there yet.  So, instead of reducing her tube feedings, I am going to switch up her schedule a bit.  Unfortunately it may mean that I have to get up during the night to feed her but that's okay.  I'll have to come up with a schedule and then try it out. 

Our ultimate goal right now is to increase Allie's oral intake but not reduce her calorie intake at all.  If anything, I would like to increase it slightly.  I would like to get her 1000 calories a day.  Right now she's about 850-900.  Her ultimate goal for her age is 1100 calories.

So, how am I feeling about all of this????  Shocked to say the lease.  To hear the therapist say Allie is ready to start eating, was a miracle.  Of course I'm kicking myself for not enrolling Allie in feeding therapy earlier, however I cannot look back.  The reason I never enrolled her earlier is because she vomited all the time.  The doctors were telling me that she couldn't possible eat enough orally and keep it down - heck we weren't even able to tube feed her enough - she was vomiting all the time.  So, again this is the first time in 3 years that I feel Allie is stable enough to proceed with feeding therapy.  I'm trying not to set my expectation too high - I know there will be many twists, u-turns and bumps in the road but this is a start.  I have been dreaming of the feeding therapy phase for a year now and it's finally here.  I feel we have picked the perfect time to start and things are just falling into place.  Maybe this will be our big break and maybe it won't but if we don't travel this road, we will never know.

I'm so proud of Allie and the progress she is making.  I'm also proud of Chloe Ann - she comes to every therapy session with us and behaves very well.  I pack a lunch for her too and she eats during therapy.  So far it's working out great.  I'm thankful the therapists includes Chloe in everything - if they didn't, it would make life much harder.

We had a little "Pin the Tail on the Donkey" fun at Auntie Shannon & Uncle Mike's the other weekend.  We got the whole family to play!!!!  Yes, Matt and I played but we didn't get pictures of us. 

Allie pinning the tail on the donkey's chest

Chloe loved playing

Auntie Shannon making a silly face when she realized she didn't even come close to the donkey's rear

Chloe looking up at Grandpa Ray making sure he wasn't cheating.  He's very sneaky!!!

Grandpa Dave got pretty close to winning

Grandma Dori was close to winning too

Grandma Mary even played.  She didn't win either

Great Grandma Saari got in on the fun too!!!  I bet it's been YEARS since she's played this game - lol

We didn't get a picture of Uncle Mike playing pin the tail on the donkey - but of course we got him eating birthday cake!!!!

Wednesday, May 4, 2011

Awesome Therapist

Allie qualified for speech therapy through the school system. She receives therapy once a week for 30 minutes at the elementary school.  To be completely honest with you, I wasn't expecting the school therapy to offer a whole lot of help for Allie.  Nothing again school therapist, it's just I didn't think we would be getting a whole lot out of one 30 minute session each week.

I was wrong!  Allie's new speech therapist through the school system is amazing.  Allie has had two session with her so far and already the therapist (Ms. Rene) has Allie saying sounds she has never said before.  Allie always drops the "S" and "H" off of the beginning of the word.  So if you ask her to say "house" she says "ouse" or "snake" she says "ake".  Ms. Rene does visual techniques with Allie and sure enough Allie is using the correct sounds for S & H.  Of course Allie doesn't use them properly every time but if she thinks about it and follows along with the visual cue, Allie can do it.   It was very interesting today because Ms. Rene showed and proved to me that Allie can say the "H" sound when she whispers but not when she talks with a normal tone.  That is because she is using a different part of her mouth when she whispers.  I thought it was very interesting and it was awesome to hear Allie say the "H" sound - even if she has to whisper to do it :)

Unfortunately, Ms. Rene only teaches speech therapy during the school year.  But we are going to get as much out of her as we can for the rest of the year.  I am very happy she is Allie's speech teacher - I think her and Allie are going to make WONDERFUL progress.  Just seeing the progress Allie has made in the last two weeks is amazing.

On another positive note, Allie has been eating a bit more.  Not sure if it's a phase she is going through but she ate half a peanut butter & jelly sandwich today.  Also, for supper she ate a good portion of sweet potato's and baked beans.  I know it's a weird combo but that's what she wanted.  Allie started feeding therapy on Tuesday and it went well.  I'll blog about that in another post.  Allie has feeding therapy again tomorrow so I'm hoping it goes as well as the first day :)

Please pray for our friend Breylon.  He is currently in the hospital with complications from Mito disease.  Breylon is such a strong little boy and he is turning 3 in a couple days.  His family is amazing, please add Breylon and his family to your prayers.  You can check out his Caringbridge page at: http://www.carepages.com/carepages/Breyman

Monday, May 2, 2011

Pediatrician Report

Allie had her 3 year well child check-up this morning and I'm happy to report that she is doing great.  Here are her measurements:

Weight - 25 lbs 12.8 oz (she gained!!!!)
Height - 2 ft 10 inches (she stayed the same)

Last Monday she had blood drawn and a full metabolic panel done up to check nutritional value with her blood.  Everything came back great except for a coupe things.

1) Neutrophil - high
This is a type of mature white blood cell that is present in the blood. There are many things that can cause your body to have a high neutrophil level.  Since Allie is doing so well, the doctor thinks that her level is elevated due to stress on her body.  It's nothing we have to worry about at this point.

2) Vitamin B12 - high
This is significantly high AGAIN.  Last time her B12 was checked it was also high.  The doctors are not concerned about it at all.  I of course will be doing a little bit more research on Vitamin B12.  If anyone has any experience or knowledge of why your B12 can be elevated, please let me know - thanks!!!

3) Pre-albumin - low
her pre-albumin was low.  This blood test is used to detect and diagnose protein-calorie malnutrition in people who are critically or chronically ill.  This test reports the current state of a persons nutrition.  So, basically this test is showing that Allie is malnourished and her body is using her stored fat for energy.  Quite frankly, I don't believe it.  Allie is consistently gaining weight and thriving.  The rest of her blood work came back great so her body is not out of whack.  Per our Pediatrician this morning, we need to try and get more calories into her - she feels this will increase her pre-albumin level.  I'm sure we will be checking this again in 6 months.

4) Creatinine - low
This test checks kidney function.   There are many reasons that can cause someone to have low creatinine levels.  We are assuming her low creatinine level is due to decrease in muscle mass - however we are not sure.  This is something we will be watching.

5) Glucose - high
Her glucose was only slightly high so it's nothing we have to be concerned with at this time.

That's all - everything else came back in the normal range.  Looking over all of her blood work, they must have checked her blood for over 100 things.  So, having only a couple things high or low is wonderful!!!  This is just proof of how well she's doing.

We celebrated Allie's 3rd birthday this weekend.  She was spoiled with lots of wonderful presents and a delicious gluten free cake decorated with Little Einstein.  Allie is still fascinated with Little Einstein and she was so excited to have that as the theme of her birthday. 

We also celebrated Chloe's second year in dance.  She had her dance review on Sunday and she did wonderful!  She is turning out to be such a good dancer.  I am so proud of her!!!

It was a great weekend and we celebrated these two special events with Grandpa Ray, Grandma Mary, Grandpa Dave, Grandma Dori and Great Grandma Mona.  Also, Aunt Judy and Uncle Gary came over for birthday cake Sunday night.  It was a wonderful weekend with family and it's so nice to be able to share these special days with them!!

Here are some pictures from this weekend......

Allie celebrating her 3rd Birthday

The girls with Grandpa Ray & Grandma Mary


The girls with Grandpa Dave & Grandma Dori

Blowing out the candle

Allie's Little Einstein cake - she loved it.  Thanks 2510 for making her a gluten free cake!

Ahhh....my little dancer, Chloe Ann

Chloe & Allie.  Allie wore sisters dance recital dress from last year.  They both looked adorable!

Chloe and I - ready for the dance review

Me and my girls - love them!