It's been a long time........

It has been a very long time since I have posted on here and A LOT has changed with Allie since then. The big news is, Allie is now tube-free!  She got her tube removed in June 2015.  We had an appointment to have it removed but it decided it wanted to come out early so it was a trip to the ER and surgery that day to have it removed.

Allie's GI Doctor insisted that her stoma would close on it's own but after a month and a half, it was still leaking.  We met with a surgeon and he stitched it shut.  That did the trick - her button is now closed tight!

Allie really likes having her tube out.  The site is looking great and she has no soreness at all.

As far as Allie's growth goes, her weight is at 39 pounds.  Her doctor is happy with that because she is following her own growth curve.  Her height was 43".  Her growth curve for height has dropped so we were referred back to Endocrinology in Marshfield for a follow-up.  It had been 2 years seen we seen them so we were due to check in anyway.

Endocrinology ran a bunch of tests.  They rechecked her for celiac, thyroid issues, hormone issues but everything came back normal. Basically they aren't sure why Allie isn't growing taller at a normal rate.  Her Endocrinologist recommended we give it 6 months and see how her growth is.  If she is not catching up at that point, he recommends we start her on growth hormones.  From my research and talking to other families, people have had great success with growth hormones so I guess we will have to make that decision if we are faced with it in April.

Overall Allie's health has been good.  She fought off a Staph infection with the help of antibiotics several months ago.  It was a little scary because the doc thought it could be MRSA.   And just this past week, she had her front tooth pulled out because she developed an abscess in the gum line of that tooth.  Allie always seems to get the "odd" things happen to her.  She cries every time we go to the doctor now, even if it's just for a checkup.  Poor peanut knows too much about doctors visits - it breaks my heart.

All in all, she is doing wonderful and loving 2nd grade! Chloe is doing great in 4th grade also.  Hard to believe the girls are old enough to be in 4th and 2nd grade.  Time goes bye too fast!

Here are a couple pics of Allie's tube removal and how it looked over time, plus the girls.....

Last picture of Allie with her feeding tube

Allie at hospital ready to get her tube removed

This is what her stoma looked like the day after tube removal. However it was leaking a fair amount.

Allie scared for the in office procedure to stitch up her stoma because it was still leaking daily.

A day after her stoma was cauterized and stitched closed.

5 days after her stoma was cauterized and stitched closed.

10 days - stitches were removed and it was looking good.

Allie - left, first day of 2nd Grade
Chloe - right, first day of 4th Grade

Allie's crazy abscess last week.  Dentist pulled her front tooth on Friday and it's looking a TON better!

Chloe and Allie at Pictured Rocks in the U.P.

GI Appointment

Allie met with Dr. Brown this morning.  It was a regular scheduled GI follow-up. Things are going good and Allie is doing well. 


Last month she went in for a weight check and had lost weight.  I'm proud to say, she's back up to the weight she was at in December, so that's good.  I wish she would have gained but at least she hasn't lost any weight.  Allie weighs 33.4 lbs.


May 9th 2013 was the last time Allie needed to use her tube for any period of time (besides two weeks when school started) so I thought I would ask Dr. Brown what his thoughts are on possibly having her tube removed.  He thought we were almost there.  He thinks we can take it out as soon as school it over.  He would like her to keep it in until school is over just in case she gets sick and doesn't recover fast enough and we need to use her tube.  We are good with that because Allie's not quite ready to give it up just yet.  She is quite attached to it even though we haven't had to use it in quite a while.


Allie is still loving school and working very hard at it.  She is struggling with her reading and math but she has started to receive additional reading help at school with the reading specialist once a day for 30 minutes.  I think this will really help.  In addition, I have been working with Allie every night on her letters and sounds.  She is making great progress.  The teacher can see that she is trying very hard and she can tell that Allie is frustrated because she isn't catching on as fast as others.  Allie's confidence is low and she is quick to ask questions and say she can't do something.  The school has recommended that Allie join summer school as an extra boost to help her with reading and math.  I'm not a fan of summer school because I think the kids really need a break but Matt and I have discussed it and we both agree this could be what Allie needs.  It's only for 4 weeks and she may love it.  My hope is that helping her at home daily and also at school, we can catch her up to be at grade level.  We have known that Allie would be behind slightly simply because of everything the poor child has endured.  So, in perspective, Allie is doing amazing in school and learning at her own pace.  She is getting the little extra help she needs and is making huge gains.  To think she went into Kindergarten not even knowing her alphabet and now she knows all the letters and can read some words is amazing.  We are so proud of her!


Here are a couple recent pictures of our little Allie.

Allie & Cosmo

Allie after she did her own makeup

Chloe and Allie painting at the Clay House

Disappointing Weight check

Yesterday Allie had a weight check with her GI doctor.  Allie has been tube free since since May except for the beginning of school when we had a slight set back and went back to tube feedings for a couple weeks.  It has seemed like Allie has been eating pretty well so I wasn't nervous about this weight check, I was actually feeling pretty confident it was going to go good.  However, I was wrong.

Allie's last weight check was on 12/20/13 and she weighed 33.4 lbs.

Yesterday (2/5/14) Allie weighed 32.6 lbs.

She lost almost a whole pound.  Not good..  I'm not sure yet what the doctor is going to say but I'm sure he will be calling.

Praying we can continue to be tube free and he will give us more time to try and have her gain weight by eating orally (if that's possible).

In any sense, in my eyes........this little girl is a sign of true beauty.  Here she is this morning getting ready for school.  There was something about her standing in her jeans supporting her feeding tube, I just had to snap a picture.  I'm so proud of this little peanut.

No - Allie was not wearing a star in this photo - I just added it to cover her up :-)

Appointment with Metabolic Geneticist

Allie had her appointment on Friday with the metabolic geneticist.  Four doctors were there for the appointment and Allie was very scared.  She didn't say one word during the whole visit. 

The appointment went well but unfortunately we didn't get any new information.  The doctors were impressed with the way Allie looks and happy to hear that she is eating orally.  She is staying consistent on her growth curve for her height, weight and head circumference.  She is at the 2.22% for all three.  No doubt she's a tiny little peanut!  At least she is following her own curve and not falling.

They did not have any new tests they wanted to run on Allie.  They basically said that she had a complete genetic makeup previously so they didn't feel there was anything more they could test for. Since she is stable at this point, there is nothing more they can do.  We were fine with that because she is doing well and of course we didn't want to put her through a blood draw if we didn't have to.

Looking ahead, both Geneticists want us to keep an eye on Allie for any developmental delays.  We need to especially watch her academically.  Right now she is slightly behind in her class.  She does not know all of her alphabet or many of her numbers but she's learning them.  The Geneticists said that you will often see developmental delays in kids like Allie during Kindergarten and first grade so we have to watch her closely.  If we see any delays, they have additional genetic testing they will do right away.  I'm just proud of Allie because she went into Kindergarten not knowing any of her alphabet and she already knows about half of them.  Allie has made such great progress since the beginning of the year - she is really proving to be a rock star in my eyes!

So, for now we keep moving ahead.  We continue to try and get more calories into Allie so she gains some weight.  She is doing amazing and continues to share her spunky little personality!

GI Follow-Up

It's been a while since I've posted.  Allie was back on tube feeds for a short time while she started Kindergarten.  She had lost a pound within a couple days of starting school so we started her feeds back up.  I kept her on her tube feeds until she gained the pound back. 

She had a follow-up with her GI doctor today. The appointment went okay, not great but not bad either.  The last time Allie saw GI was on August 29th so it's been almost 3 months.  Little Allie hasn't gained any weight in the past 3 months - bummer!!!!!  She is hanging steady at 32.6 pounds.  I'm a bit disappointed but at least she's not loosing weight. 

Our plan right now is to give her another month without tube feeds and really try to encourage her to eat more orally.  I will be pushing her calorie intake daily.  If she doesn't gain weight within the next month, we may have to go back to some tube feeds, we will see. 

This Friday we see a new specialist at the Marshfield Clinic.  Allie will meet Dr. Rice, he's a Metabolic Geneticist.  We have been waiting to see him for over a year.  I'm anxious for this appointment.  I'm not getting my hopes up that we will get answers but you just never know. I'll update on Friday after her appointment to let you know if we get any new leads.

Allie now has a Wisconsin 504 plan for school also.  She got approved for the plan about a month into school.  The school is providing someone to be with Allie during snacks and lunch so they can monitor her and encourage her to eat.  They are also keeping a diary of what Allie is eating and drinking during the day.  Thank you to everyone at the school that is taking care of my little girl - you guys are doing amazing!!!

Allie is loving Kindergarten and she adjusted very well.  I'm so proud of her!

Allie always striking a pose

One step backwards

Kind of a sad day in the Berndt house today.  I made the decision to put Allie back on her tube feedings.  She started Kindergarten last Monday and since then, she has dropped over a pound.  I knew that once she started school, it was going to be difficult for her to continue eating orally but it's proving to be more of a challenge than I originally thought.  Allie needs a certain type of environment and me or someone else with her constantly telling her she needs to eat.  If she doesn't have that, she simply won't consume enough calories. 

Allie tried really hard last week to eat on her own during lunch time but it's just not working out.  I know starting Kindergarten is a huge change in her life and she needs time to adjust to it.  With time, she may eat a little more but for right now, she's just not eating enough to maintain her weight.  She has lost over a pound in 1 week and that is one pound we cannot afford for her to lose.  It takes Allie so much time to gain weight that loosing even the slightest bit of weight is a huge deal.

I'm disappointed, not in Allie but in the whole situation of having to go back to tube feedings.  Allie has worked very hard this summer on her oral eating and she gained a whopping 2 pounds since May.  That is the biggest weight gain that Allie has ever had in such a short period of time.  She did that all on her own with real food through her mouth.  But, going back to tube feedings is just a bump in the road, it's not an end.  We have taken this detour before and we will take it again in hopes that one day we will turn this corner and not have to look back. 

I talked to Allie tonight about using her tube again and she said, "Mom, I don't want to eat at school anymore, I'm just tired.".  I know it's hard for Allie to eat especially when I'm making her eat or someone else is making her eat.  When I say making her eat, I don't mean force feeding her.  We are not holding her down and forcing her to eat.  She is willingly opening her mouth but we are encouraging her to eat and bribing her at times.  There is no force feeding in this family - I am strongly again that!!!!!  Allie is tired and rightfully so, she has worked very hard for the past 4 months on her oral eating and if she's ready to take a break and go back to tube feedings, then we will grant her that. 

So, back to the drawing board with the school so we can figure out a routine on when her tube feedings will be administered. We are hoping to only need one feeding at lunch time but depending on how her weight does, we may need to do more. I will be going to school each day to do her feeding until a plan is in place.  I think the hardest part for me is that I know once Allie gets tube feedings, her oral intake decreases dramatically because she's always full from her feedings.  We give her the chance to eat, but she's still full from the previous feeding.  It's just hard to watch your child not eat when you know they can, if they will.  This morning she chose not to eat and just have a tube feeding - broke my heart but I did as she wished. 

On a very positive side, Allie is doing wonderful in Kindergarten and is adjusting just great.  She loves her teacher and comes home everyday with a smile on her face.  I am so proud of her.   Allie has also started gymnastics and is loving her.  She is making me proud everyday and I'm so thankful she's mine!

Allie having fun at the lake

Chloe and Allie enjoying the pontoon boat

Hold That Tube Feeding

Allie has been tube feeding free for almost two months now.  We decided to stop her tube feedings and see what happens.  We did this in the past, numerous times and within a week or two, she would start loosing weight.  Well, to our surprise, she hasn't lost any weight yet and it's been almost two months.  Her eating goes in spurts but the important thing is she hasn't lost any weight. 

She meets with her endocrinologist tomorrow in Marshfield.  I'm hoping her growth is going to show a significant increase. 

Overall, Allie has been doing great!  She is finally coming to terms that she has to go to Kindergarten in a couple months.  I know once she gets there, she will love it.  She just doesn't like the idea of having to leave home, she likes to hang out with mom all day.

We have been praying for the day when Allie no longer needs her feeding tube and it's possible that we are reaching that point.  For now, we are just letting her go at her own pace and if she decides to continue to eat by mouth, wonderful!!!!! however, if something changes and she needs feedings again, that's okay.  I'm suspecting once school starts, feedings might need to be started again because I won't be right by her side all day pushing her to eat or telling her how important it is to eat in order to have energy, etc.  So, time will tell and we will just let Allie be Allie and let her go at her own pace.  For now though, we are making progress and that is wonderful!!!!

Hope everyone is having a wonderful summer!

Doing Amazing

Well, for once I get to give a very positive update!  Allie is doing wonderful.  After meeting with her Dietician, we switched up her formula and feeding schedule.  She is now tolerating her feeds better than ever and we are getting slightly more calories into her. 

As stated in my previous post, we have switched Allie's formula to Pediasure Peptide (predigested formula).  We are still adding Duocoal to it to add a little extra calories.  Allie now receives all of her feeding via gravity bag.  It works wonderful.  The downside is Allie's feedings now take a half hour each time but that's okay.  She's a calm little girl and doesn't mind sitting on the couch or her bed for a half hour.

Allie gets 3 feedings during the day and each feeding is 4 oz.  At night, she gets 6 oz over an hour period.  Of course she still isn't getting the full calories she needs but we are working on it. 

In addition, Allie is still eating a little bit orally.  It continues to go in spurts but we are not pushing her oral eating at all - if she doesn't want to eat, we simply give her a feeding and it's all good.  I don't care how she's getting her calories, I just make sure she gets them.

So, I'm happy to say that things are finally going a little bit smoother and Allie is starting to gain weight again.  She sees her GI doctor next week so I'm excited for her weight check.  I'm praying she is over 29 pounds and that her height has increased! 

Since Allie is getting more calories, her energy has increased and she is less crabby too.  She just seems like a happier little girl!

Chloe speeding up Allie's feeding - apparently the medical pole didn't life the gravity bag high enough. Crazy kids!

Changing things up for little Allie

Received a call this morning on Allie's stool sample.  There was no blood in her stool and there were no signs of inflammatory disease or malabsorption issues - yeah!  Her stool was perfectly normal, I guess as normal as stool can be.

We met with her Dietician in Marshfield yesterday.  It was a very successful appointment and we are changing things up for little Allie.  We are hoping to turn her into big Allie but I know that's a long shot. 

First change we are making is switching her formula to Pediasure Peptide.  This is an elemental formula which is pre-digested so her tummy won't have to work very hard to digest it.  It also has a lower fat content which helps speed up digestion.  We are hoping that with her gastroparesis, this pre-digested formula with flow through her system much faster - and eventually she will be handle to handle larger quantities at a time.  Allie used to be on an enteral formula a little over a year ago and it made no difference in her digestion, however she's older now so maybe it will help.

Second change is we are kind of going back to night feeds.  She isn't going to be using the pump, but she will be using a gravity feed bag.  We will hook her up at 10:00 at night and let 4-5 oz slowly gravity drip in for an hour.  The theory is that as some drips in, some drips out of her stomach also.  We are hoping this will allow for her to tolerate a little bit more formula.

Switching back to night feeds or even "extremely" slow feeds is taking a step backwards for us.  It will confuse her stomach because her tummy will not have the full sensation then the empty sensation.  However, at this point, it doesn't matter. What matters is getting more calories into her little body so hopefully she can gain back some muscle tone and grow - height and weight!  We have toyed with the idea of going back to night feeds with her pump,m, however with her gastroparesis, her tummy would be full by morning and that would throw our daytime feeds all off.  So, I think trying the gravity drip feeds for an hour is wonderful - I'm praying it works.

We are meeting again with her GI doctor in 2 months so hopefully she will have a good weight gain by then. 

Hope everyone is having a great 2013!!!

Bone Age and Blood Work Results

Allie's recent bone age test came back with a result of 3.5 years old.  She is now a whole year behind in growth.  When her bone age was tested a year ago, she was only 6 months behind.  Of course, these are not the results we were hoping for, however, it's something to work with.  What does her bone age test results mean????  Basically, she has a lot of room to grow!  It means that her bones are at the age 3.5 and they are suppose to be at 4.5.  Most likely her bone growth is delayed due to lack of nutrition.  Even though she has a feeding tube, we still struggle with getting enough calories into her on a daily basis.  This struggle is due to her gastroparesis along with her extremely small stomach capacity (3 oz at the most at a time).

Her blood work came back pretty normal.  Her prealbrium has dropped quite a bit.  This is her overall nutritional status. In August of 2011 it was at a 26 and now it's at 16.  The doctor wasn't happy about that number.  What do we do to raise that number?  We try to feed her more.

I made an appointment with our Dietician right away.  We are scheduled to meet her on January 8th at 2:45.  I am hoping that she can help us with figuring out a way to get more food into Allie.  I'm not sure what she is going to suggest, but something has to be done.  I'm anxious for the appointment.

We all had a very Merry Christmas.  We hope you all have good health and happiness in 2013.

Chloe, Allie & Baby Ashley

Endocrinologist Follow-Up

We met with Dr. Chaudry today, she is Allie's Endocrinologist at the Marshfield Clinic.  This was a follow up appointment for her height and weight.  We were there about 4 months ago and Allie's weight and height were of quite a concern because they hadn't increased much.  It's basically the same story AGAIN! 

Allie weighed 28 pounds today and I cannot remember her height right now but it hadn't increased much since our last appointment.  Allie's weight is 1% on the chart and her height is at 4%.  Her weight is falling farther down the chart and her height is staying about on the same curve.

Dr. Chaudry confirmed today that Allie has very low muscle tone and very very weak refluxes.  The low muscle tone might help solve the reason that Allie always seems to fall. 

If Allie stays on her current height curve, her preliminary projected height (as the best case scenario) is 5 feet tall.  Dr. Chaudry said that Allie is a candidate right now for growth hormones but she said she would prefer to watch her for another year and then make the decision whether the hormones are right for Allie or not.  We agreed with this because in all honestly, we don't want to put Allie on growth hormones unless it's ABSOLUTELY necessary.

Allie had blood work done today to check for numerous things including, zinc, iron and vitamin C.  She also had another bone density X-ray of her hand.  Dr. Chaudry is thinking her bone age has fallen farther behind than before - but this will just confirm if she's correct or not.  We should get results to the tests within a week.

Right now we really need to focus on getting more calories into Allie.  With her ability to only handle small amounts of liquid every couple hours, it's such a challenge to get food into her.  We are thinking of putting her back on the pump at night - but that's just such a set back for her stomach and her brain communicating when her stomach is full, etc.  However, I have a feeling a set back might be what is needed in order to move forward with her weight issue.  We already add Duo-cal to her formula and she's on a 1.5 cal formula - so she's getting a high dense calorie intake.  If anyone has any suggestions as to how to add additional calories, please share them with me.

We are all getting ready for Christmas and the girls cannot wait for Santa to come.  We finally got some snow today and the girls played outside almost all day.  Well, I should say Chloe played outside - Allie isn't too wild about the cold.  She goes out for a little while but then comes in and warms up. 

We hope everyone has a very blessed Christmas and New Years - take care.

Surgery was successful

Allie had her dental surgery yesterday.  Not sure why but I thought this procedure was going to be a breeze for her.  I guess I didn't anticipate how scared she would be and how much pain she could have aftwerwards.

Surgery itself went great - it was the before and after that was so hard.  Allie freaked out when the nurse tried to take her back to surgery - it was awful.  Matt and I were both in tears.  Allie had received the verset medicine but apparently it didn't work this time.  She screamed all the way back to the operating room - yes, we could hear her! 

Surgery took about an hour.  I guess it takes a while to get the caps fitted and put in place over her teeth.  Allie's gums were growing around the back side of her teeth so they also had to grind down the gums all around her mouth - this would insure a good fit for the caps. 

Of course she woke up from anethsia kicking and screaming but this was like nothing Matt and I ever seen before.  Allie was completely inconsolable.  She was crying out, "mom, help me".  It was awful.  But, we managed and she's fine.  We left the hospital about 15 minutes after surgery.  Record time for getting out of there no doubt - I personally think the nurses (and staff) just wanted us gone because Allie was being so loud with her kicking and screaming.  If she was much bigger, I don't think I would have been able to even hang onto her.

Once we left the hospital, she calmed down and she was clonked out.  We didn't even put her in her car seat, I just held her in the backseat on the way home.  I slept with her for about 2 hours in her bed and when she woke up, she was happy.

Her mouth is a little sore but we are continuing with tylenol and motrin.  Out of everything, she says her throat hurts the most.  It's probably from being incubated - not sure. But she is handling the pain very well - she is even eating a little bit.

Glad this procedure is over and like I said, I totally under estimated this.  I guess I was thinking a dental procedure wouldn't be too difficult, however I was wrong.  This was awful for Allie.  Her mouth was bleeding like crazy, she swalled a lot of blood during surgery (we vented her stomach with her tube after surgery and she vented out a ton of blood).  Her recovery seems to be quick though - it's 24 hours since surgery and she's almost back to her normal self.

Thank you to everyone for keeping her in your prayers.  We truly appreciate it. 

In addition to Allie's surgery, our dog Cosmo was sick yesterday too.  She was scheduled to be spayed but woke up not being able to walk on her front leg.  I took her to the vet and she was diagnosed with lymes and anaplomosis.  It can be very serious but it seems we caught it early and she's doing good now.  She's on pain medication and antibiotics to keep her comfortable.

The Berndt household should be back to tip top shape in no time :)

Here are a couple pictures and video of Allie's surgery from yesterday.

Allie still happy before surgery

Allie not happy because they want to take her away

Both sick patients yesterday

Surgery on Wednesday

Allie had a regular dentist checkup last week and we didn't get the results we were hoping for.  Like many things with Allie, we are learning as we trudge forward with her medical issues.

Allie was born with enamel hypoplasia, basically born with no enamel on her teeth.  This makes her teeth very prone to cavities and other issues.  Allies dentist has been great and we have been watching her teeth closely for a while now.  In addition, Allie's oral development is delayed - not just in eating but in her teeth development as well.  Allies back molars came in but her gums never receded, therefore they are very close to her molars.  This is a prime spot for food to get stuck and it's almost impossible to get out.  All of Allies 4 back molars are severely affected by this along with the fact that they have no enamel on them. Allie's back teeth are decaying and we need to do something about it even though they are baby teeth.  She will keep these 4 molars until approximately age 12.

The only way to save these teeth is to cap them.  She will have 4 metal caps put on her teeth this coming Wednesday.  Due to Allies medical history and her fear of procedures, surgery, needles and everything else associated with doctors, her dentist requires us to have this procedure done at the hospital under full anesthesia.

Allie goes to her Pediatrician on Monday for a check-up to make sure she is well enough for surgery and then on Wednesday, Allie will have the caps put on her teeth at the hospital. 

Allie will be sore after surgery because they have to grind down her gums in the back by all 4 of her teeth.  In addition, her dentist said that having the metal caps will change her bite and it will feel like she has marbles in her mouth.  So, it's going to be uncomfortable no doubt but I am thankful for her feeding tube in case we have any issues with her not being able to eat even small amounts. 

This is not a major surgery but just the fact that she has to have this procedure done at the hospital and that I have to hand my baby over to the doctors AGAIN for her to be under full anesthesia, is scary.  As many of us know and experience, it never gets easier handing over your child to the doctors - if anything, it gets worse.  Allie is now 4 years old and knows what is happening - she's been through surgeries before and she knows what to expect. 

I'm positive everything will go smoothly and we will get past this hurdle with no major issues, but please keep little Allie in your prayers next week as she goes through this.  She is one tough little girl!

Our little Allie Rae

GI Follow-up

Allie had a GI follow-up yesterday.  It's been a while since she seen Dr. Brown so I figured this would be an interesting appointment.  I always get a bit sad going to these appointments because it's never "great" news.  It's not bad news, but not great either.

Allie's weight was 27.4 pounds and her height was 37 inches. Allie's weight has increased about a half a pound since May and her height barely increased.  She had a weight gain so it's not bad news but since the weight gain was very minimal in the last 5 months, it's not "great" news either.

Dr. Brown believes that Allie has become tachphylactic (immune) to her Ranitidine medication so he's putting her on Nizatidine.  This should help reduce stomach acid - which could be slowing her stomach digestion down and contributing to her delayed emptying.  She is also on Erythromycin but she may be immune to that also so they could switch her to Cyproheptadine in the near future.  The Erythromycin is used to help stimulate her stomach muscles in hopes that the stomach processes food faster.

In all honestly, it doesn't seem like the medication is doing much of anything, however what else do we have to try?  Gastroparesis is not fixable it's only treatable by medication.  There is only 1 medication that we haven't tried, Reglan and I refuse to try it on Allie.

Allie continues to only handle 3 oz of food at a time.  Her oral intake remains about the same and it continues to be sporadic.  I hate to complain because she is at least eating orally a little bit and that is what we ultimately hope for.  It's just very frustrating that her tiny little tummy can only handle 3 oz of food or she throws up. With her stomach only being able to handle such a small amount plus her delayed emptying, we are continuing to struggle getting enough food into her.  We have decided to try the Duocal again - this will add calories to her blends.  I'm not wild about it because it's "empty" calories for her but nothing less, they are calories and she needs them.

Allie is really enjoying Preschool and she is getting more brave at leaving me.  She doesn't cry when I bring her to school anymore.  It really helps that some of her great friends are in her class - that is such a blessing.  Allie is growing up quickly and her personality is showing it.  She's becoming such a big girl now and is enjoying being a little bit more independent on some things.  She still needs mom for most things - even getting her dressed.  However, I don't mind, she's my little peanut!

Here are a couple pictures of the girls playing in the rain.

Back on medication

Received a call from Allie's GI doctor saying that he would like Allie back on her Erythromycin medication and he wants to up the dose from last time.  He said that since her growth rate fell in the last 6 months, he's concerned.  With putting her back on the medication and with a higher dose, he's hoping this will increase her oral intake.

Erythromycin is used to help moved things along in the digestive track.  Since Allie's stomach doesn't empty properly, the doctor is hoping this medication speeds up her emptying so she feels hungry.  This medication should also help Allie empty her stomach faster for her tube feedings - so hopefully we can get more calories into her.

Allie has been on this medication previously, numerous times actually and we seen very little to no changes in her.  However, we are hoping this time it works, especially with the increased dose.

Allie started 4 year old preschool last week.  She's in class with some great friends so I am hoping she transitions a little better than last year.  The silly girl just doesn't want to leave my side - EVER!  We had a great summer but honestly, I'm happy school is back in session.

Allie continues to do good.  We have no knew possible diagnosis for her and we are not truly actively searching at this time.  I continue to do my research daily on possible diagnosis's, however we are still taking a break from doctors.  We pray daily for an answer but for now, we are just living our life and enjoying it.

Allie's first day of 4 year old preschool

Allie giving us a big smile!

Chloe's first day of 1st grade - they grow up too fast!

Endocrinologist Appt.

Allie had an appointment with her endocrinologist at the Marshfield Clinic last week.  Her appointment was a follow-up to monitor her growth. 

Allie weighed 26 pounds and is 37 inches tall. This puts Allie in less than the 3rd percentile for both height and weight.  Of course, this is nothing new, however her stats are falling once again on the growth chart.  Her curve is going downwards and the doctor is very concerned.

Allie's growth rate last year was 8.2% which is acceptable, however this year her growth rate has dropped to 4.8%.  That is too low according to her doctor. 

We are scheduled to meet with her Endocrinologist again in December and if Allie's growth rate does not increase in the next 4 months, they want to start Allie on growth hormones, which is an injection everyday. 

We have been tossing the idea of growth hormones around for her for quite a while.  We just didn't feel like it was right for her at the time.  However, depending on her next visit, the doctor is really going to push it.  Of course, we haven't decided if growth hormones would be right for Allie - we will make that decision when we have to.

In the meantime, we are trying to increase Allie's tube feedings, but continue to struggle with the fact that Allie's stomach is super small (cannot handle more than 3 oz) and the fact that her stomach doesn't empty properly.  So, it's always a struggle to get enough calories into this girl. 

On another note......Allie's behavior has been difficult again, a lot of whining, crying and not sleeping.  So, I decided to bring her to the walk in because I knew something wasn't right with her.  Sure enough, Allie has strep throat.  Poor little pumpkin.  I had been asking her if anything hurt and even asked her specifically if her throat hurt but she always said no.  One more example of how little Allie has such a high tolerance for pain.  She is now on her medication and we are praying it helps her feel better so in turn her behavior goes back to being happy.

Overall, Allie is doing well.  She is ready for preschool to start and so is mom!  Please pray that Allie's growth rate increases in the next 4 months so we don't have to cross the bridge regarding growth hormones for little Allie.  Thank you.

The girls being so big :)

Mito Blood Work Results

We have finally received Allie's blood work results for her preliminary mito testing.  Allie underwent genetic testing for TYMP mitochondrial gene testing as well as the whole mitochondrial genome testing.  All of her test results are entirely normal.  With these results, the doctor obviously doesn't want to do any further testing for mitochondrial disease.  This is a huge relief for us, however with normal results, it leads us right back to square one.

Allie's Geneticist wants to see her again in a year and they also have another metabolic Geneticist that would like to see Allie.  They have some possible additional testing they would like to do but it's nothing urgent so they will plan to do it next April.

It's been a while since I have updated Allie's site.  Seems as if life is just going bye too fast and there isn't time to fit everything in.  Allie's health is continuing to be good.  She is still struggling with her weight - still weighing in at 26.6 pounds.  She is eating maybe half of her food by mouth but it's sporadic of course.  Some days she does really well and other days she won't eat anything.  She's getting into a habit recently to just ask for tube feedings because she says she doesn't like the food.  She will take one bite of something then say she doesn't like it.  It's frustrating but we are just continuing to be thankful we have her feeding tube to keep her healthy.

No upcoming doctors appointment for Allie in the near future.  We are letting Allie enjoy her summer and trying to keep her away from the doctors as much as possible.  She is enjoying camping, our cottage, swimming and playing with her friends.  With the hot weather lately, Allie much prefers to be inside in the air conditioning.  Allie doesn't handle the hot and cold weather real good.

Overall, everything is going well.  Allie continues to be my spunky little girl. 

Allie graduated from 3 year old Preschool.  My little princesses!

Here is our new puppy Cosmo.  She is a 10 week old yellow lab.  She fits into our family circus perfect!!!!

Blood work for Mito

It's been a long time since I've updated Allie's blog.  Things have been going relatively smoothly lately.  At one of Allie's doctors appointments, a new doctor recommended Allie see a metabolic geneticist.  So, I scheduled her an appointment at the Marshfield Clinic in Marshfield and we met a new geneticist about a month ago.  Come to find out, Allie had extensive metabolic genetic testing done in 2009 when we first met the geneticist at Children's Hospital of Wisconsin. 

Our new geneticist recommended that we get Allie's blood tested for signs of mitochondrial disease.  She said that with Allie's digestive issues and other issues, she could have some form of mito disease.  Of course this has always been in the back of my mind but I know the actual testing for it is extensive and invasive.  However, the geneticist said that we can start testing with blood work and if anything suspicious comes back, then we should proceed with the muscle biopsy.

The blood work is thousands of dollars so it had to be approved by insurance, apparently it's been approved because I received a phone call this afternoon looking to schedule Allie for her blood work.  I'm happy it got approved.  The blood results can take up to 4 months to come back.  This is a long process and I know the waiting is going to be stressful.  I'm very nervous about the results. I'm happy that we are moving forward again with her medical issues, however this testing can determine a lot.

As for Allie's oral eating, she was doing great for about 2 weeks and this past week, she stopped eating pretty much entirely.  She is taking a couple bites but that's about it.  She remains on her Ranitidine for her stomach acid and she's also on erithromycin for an appetite enhancer.  Overall she's doing well and anxious for summer. 

Please keep Allie in your prayers as they do preliminary blood work for any signs of mitochondrial disease. 

Quick Catch-Up

My last post was about Allie's abnormal blood work. She had abnormal organic acid blood work. After that, she had plasma organic acid blood work and a urine sample done. All results from those came back normal.

However, due to the organic amic acids coming back abnormal, we are proceeding with a Geneticist as the Marshfield Clinic and we are hoping to have some metabolic genetic testing done. Allie's appointment is scheduled for April 12th.

We met with Allie's Neuro Psychologist a couple weeks ago and they did her behavior analysis. I got the results through a phone call this week (due to bad weather) and for her congnitive skills, she's in the the normal range. For spacial skills, she's in the high normal. The doctor confirmed that Allie's behavior is not typical 3 year old behavior, it's due to her chronic medical condition. Her Psychologist is recommending behavior therapy once a week. During this therapy, they are hoping to understand Allie better and hoping that she will help them determine if her bad behavior is due to pain, depression, anger, etc. Matt and I haven't fully decided if we are going to proceed with the behavior therapy - but most likely we are.

Allie had an endoscopy last Friday. This was ordered because Allie cannot handle full feedings. Anything over 3 oz and she vomits. During her last Upper GI Series, (a couple weeks ago), the Radiologist saw inflammation in her intestines. In addition, Allie has been complaining of stomach's aches daily. Her endoscopy went well. It was very hard to hand her over to the doctor this time - she's older now and understands everything that is going on. The doctor said that he seen a lot of infammation in her intestines but everything else looked good.

Got the biopsie results this week and everything came back normal. They checked her for celiac disease, deep tissue inflammation, lactose intolerance and the ability to digest certain sugars. Everything NORMAL!!!

Everything always seems normal, yet my little girl is not the norm. It's fustrating when all the results come back normal. Overall Allie is still doing good. She still is not able to handle her full feedings and she still complains of belly aches but besides that's she good. She is still spunky as ever :-).

Thank you for the continued prayers - we are continuing to search for answers so Allie can feel 100% healthy again!

The girls being silly

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Abnormal Blood Work

Allie's nurse called the other day and stated that Allie's organic amino acid blood test came back abnormal.

I received a copy of her blood work yesterday and it looks like this:

"Creatinine" - low
"Anion Gap (mEg/L)" - high
"Carnitine, Free" - low
"3-OH-Butyric Acid, Plasma" -extremely high
"Acetoacetic Acid, Plasma" - extremely high
"20 Ketoisovaleric Acid, Plasma" - high

On top of the report, there was a section called "Organic Acids, Plasma Interpretation".  This is what it says.  "ABNORMAL.  Severe Ketonemia suggesting catabolic state."

Not sure what all this blood work means but I'm not liking it.  The doctor called and had us go in on Tuesday right away for additional blood work and a urine test.  They are now checking her organic acids and checking for sugar in her urine.

I have been doing a little research on her test results but I haven't been able to find a ton of information.  Her doctor won't tell me much until the next round of testing comes back, my guess is he doesn't really know yet what it all means. 

We should get her new blood work and urine test back hopefully on Monday.  Waiting is sometimes the worst part!!!

Overall, Allie is doing good.  She has stopped vomiting since being on the new medication.  In addition, her behavior has improved dramatically.  She still refuses to drink anything besides water but that's why we are thankful for her feeding tube :)

Happy Feeding Tube Awareness Week (Feb 5-11)

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