Monday, November 25, 2013

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!

Tuesday, November 19, 2013

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

Tuesday, September 10, 2013

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

Thursday, July 25, 2013

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!

Tuesday, February 19, 2013

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!

Wednesday, January 9, 2013

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!!!

Wednesday, January 2, 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