Thursday, December 22, 2011

Weight Check and Doctors Appointment

Yesterday, Allie went to see her GI doctor for a regular check-up and weight check.  I am so happy to report that Allie weighed 27.4 pounds - yeah.  She gained almost a pound this past month.  I'm so excited to see that she actually gained weight.  Maybe taking her off the blenderized diet for a little bit was just what Allie needed.  I will keep her on the formula for a little while longer - we go back for a weight check in a month so we'll see how her weight is going then.

We talked to her GI doctor about Allie's recent diagnosis of Gastroparesis with solids.  He said there are many things that can cause this including: post infections, diabetes, autoimmune issues, metabolic issues, neurological issues, inflammatory GI issues, food allergies, celiac disease and many more.  At this point, we do not know what is causing Allie's stomach to not work properly but along her medical journey, the doctors have been checking specific "markers" which would red flag some of the items above if there was an issue with them.  So, for now we don't know the cause but hopefully down the road, we will find out.

Dr. Brown also indicated that Gastroparesis can come and go with some patients.  Sometimes viral infections can slow the stomach from emptying, etc.  However, he doesn't feel that is the case with Allie - he has a feeling her tummy hasn't been working properly for a while.  So, we are all hoping her new medication from Canada will work wonders.  Another positive is that Dr. Brown stated many children with Gastroparesis outgrow it.  Of course, nobody knows if Allie will outgrow it but it's just nice to know it's a possibility.

To be honest, my motherly instinct is telling me that this is not Allie's underlying issue.  There are just too many things that go without answers if this is her underlying problem.  For example, how come Allie didn't grow "normally" in utero - she was born small for gestational age.  In addition, if her stomach works okay with liquids, how come she never drank a significant amount of breast milk or formula as an infant?  There are just a lot of unanswered questions but at this point, I'm just happy that we received an abnormal test result and we can finally move forward!!!!!!

And now for a super silly picture of Little Miss......

Allie wearing "clean" underwear on her head while she is getting a feeding -truly a silly girl.

Wednesday, December 21, 2011

Food Change for Allie

Since Allie is always struggling to gain weight, I decided to switch things up again with her.  She has been on a blenderized diet since January 2010 (almost a year now) and she gained weight when we initially put her on it. For the past couple months, Allie has really been struggling with her weight, even with her tube feeds.  So, I decided to put her back on formula and see what happens.

Allie is now getting 4 feedings a day 4 oz each.  She can only handle 4 oz of a liquid feed at a time otherwise she will vomit.  It was very interesting because the day I switched her back to formula, her gagging started back up.  She has now vomited about 5 times with the liquid.  There is no doubt that Allie's tummy cannot handle the liquid volume like the blenderized volume.  However, if I do her tube feeding really slow and don't exceed 4 oz., she typically keeps it down. 

Allie is once again on the Boost Kid Essentials 1.5 cal.  I'm anxious to see how her weight is since switching her off the blenderized diet. We see her GI doctor this afternoon so she'll be getting a weight check.

I have to admit it doesn't feel good giving Allie formula again, but it is just a trial.  I plan to go back to the blenderized diet shortly - I just wanted to see how Allie gains weight with the formula again.  It could be the boost she needs.

In addition, since getting Allie's latest gastric emptying test results (with solids) I want to give her tummy a rest from having to work too hard to digest anything.  I haven't seen an change in Allie since switching her back to liquid formula - I don't think she cares what she gets as long as she's getting fed and fed on her terms of course.

Here are a couple pictures of the girls at the Christmas parade in Wausau.

Monday, December 19, 2011

Decision Made

After many discussions between Matt and I, we made a decision on how to proceed with Allie's care.  Since we both agreed that we didn't want to give Allie "Reglan", we had to decide between giving her no medication and giving her the Canandian medicine, "Domperidone".

"Domperidone" should help stimulate Allie's stomach muscles so her stomach can process and digest food in a normal time frame.  The medication takes about 2 weeks to work and the only way we will know if it's working is if Allie's oral intake increases. 

We have decided to try the Domperidone.  The Canandian pharmacy contacted me a couple days ago and the medication is being made and shipped.  It will take at least 10 days to get here because of going through customs.  I'm excited to have Allie try it. 

Allie hasn't eaten her whole life so I would be very surprised if she starts to eat because her stomach is emptying properly.  I strongly believe that Allie doesn't know what hunger feels like so even if she has an empty stomach, she probably won't know that sense she is feeling is the feeling of hunger.  I might be totally wrong and I pray this medication is the answer we have been searching for.  However, I'm not setting my hopes too high. 

So within the next week, Allie will be starting her new stomach emptying medication.  I will keep her blog updated on her progress.  You never know.......this could be the lost puzzle piece :)

Friday, December 16, 2011

Two Years Ago Today

Exactly two years ago today, it was one of the scariest days of my life.  December 16, 2009, We brought Allie back to the ER for excessive vomiting and dehydration.  Allie hadn't kept any tube feedings down since she got her tube placed 5 days before.  Allie was in bad shape and the ER at St. Francis Hospital was not in a position to help us since all of Allie's care was at the Children's Hospital of Wisconsin.

Immediately after being examined by the ER doctors, they were on the phone with Children's Specialist to figure out how they should proceed.  I remember the ER doctor walking into the room and saying, "Allie has to go back to the Children's Hospital tonight".  Then he proceed to say that the Children's Hospital is requiring her to be airlifted there.  The plane was on it's way and we had to go home to pack and drive down to Milwaukee.  There was no way I was letting my little girl on a plane without me - so after refusing to drive, they let me on the plane. 

I will never forget seeing the Medevac Life Flight nurses and paramedics walk into the ER and take charge of Allie's care like there was nobody else who could care for her better.  They didn't mess around - it was mass chaos with checking vitals, getting her strapped on the gurney and getting everything hooked up to her so they could monitor every body function possible.  It was scary and strangely, I was too scared to cry.  It was like I was a zombie going through the motions.  However, looking back, I remember the details of the event as if it happened yesterday.

After being air lifted to Children's that night, Allie stayed in the hospital until December 24th.  Doctors, nurses and therapist worked with her continually trying to figure out what was causing her vomiting.  Finally they discovered she had severe gastroparesis with liquids and she got her J-tube placed (into her intestines).  Even with J-tube feeds, Allie continued to throw up.  From December 2009 till around March 2010, Allie thew up almost every feeding.  Life was a constant challenge.

Looking back, Allie has improved a great amount but the daily struggles with tube feedings, gaining weight and behavior is still an ongoing battle.  We have moved forward by leaps and bounds the last two years and I'm proud of Allie with her progress.  We still have a long way to go but we are going to make it.

Looking back, I feel so blessed that God had chosen Matt and I to be Allie's parents.  There is no doubt that Allie's medical issues have put a strain on our marriage and there have been plenty of times that we didn't agree on a certain test that was recommended, a doctor one of us didn't like, surgeries that were recommended or even recommended medication.   However, in the end, we work it out and do what is best for Allie at that specific time.  I have learnt to stand up against the doctors and question their every move.  Nobody has Allie's best interest at heart like her parents and we have come to learn this the hard way - but never less, we have learnt it!!!!

Allie's Christmas Program at Preschool - 2011

Wednesday, December 7, 2011

Results of Gastric Emptying Test with Solids

I won't bore you with the details of Allie's gastric emptying test (with solids) today.  It's just important to note that Allie ate 1/4 of a hot dog injected with radio active material and then she went through the test like a pro. She is such a trooper - I'm so proud of her.

We were suppose to get her test results within 4 days but after being home about an hour, Allie's nurse called with the results.  To my surprise, Allie has a severe gastric emptying delay with solids.  Her stomach is emptying at 16% only.  It takes an average person 90 minutes to empty their stomach of solids and it takes Allie 317 minutes.

So, is this Allie's ultimate reason she doesn't eat, I don't think so but it definitely could be playing a roll in it.  Since it takes Allie's stomach so long to empty her solid food, she always has a full belly and therefore never feels hungry. 

Dr. Brown recommends we put Allie on Reglan to help her digest her solid foods.  However, the possible side effects to that medication is too great for me to justify it.  The side effects can be major and permanently life changing.   An alternative medication is called Domperidone but it's not FDA approved in the United States.  We can get it from Canada but since it's not FDA approved, insurance will not pay for it.  There is also side effects to this medication but from my research so far, the side effects are not as severe as Reglan.   There is one more medication out there called Erithyromicin that helps with stomach emptying, however Allie has been on that several times and it never helped her. 

So, Matt and I need to make a decision and right now the only thing we agree on is that Reglan is not safe enough for our little Allie.  I would like to try the Domperidon but Matt isn't comfortable with it not being FDA approved and with some of the side effects.  So......once again, we need to make a tough decision and we are not at the decision point quite yet.

I'm very relieved to have finally heard that one of Allie's test came back abnormal.  After so many years of normal test results, it's a relief to hear that something is abnormal.  I know it sounds strange but all of the parents out there that continually are searching for a diagnosis will understand my thinking. 

Now we have an abnormal test results and the options to fix the problem are somewhat risky.  It's not what we were hoping for but it's a step in the right direction and I know things could be worse.  So, we need to make a decision as to what our next step will be.  In general, Allie is doing great and is continually her spunky self!!!!

Here are a couple pictures of Allie today at the hospital.

Allie with Mr. Balloony (the Tech made her this)

Allie during her gastric emptying test with solids

Another view of her gastric emptying test (this machine is a bit different than the one at CHW)

Monday, December 5, 2011

Another Test/Procdure Required

Received a call this morning from Allie's GI doctor (Dr. Brown) stating he had looked over her last weight and height check and is concerned.  He cannot figure out why Allie doesn't gain weight.  We have been tracking her weight for a long time now and it seems to fluctuate but never really increases a significant amount. 

He requested that we get her in this week for a gastric emptying test with solids.  We have had numerous gastric emptying tests but they have always been with liquids.  In 2009, Allie's first test with liquids showed a significant delay and she was diagnosed with Gastroparesis.  She then had another emptying test with liquids done in 2010 and that showed a slight delay.  She just had another gastric emptying test at Children's Hospital last month and that showed everything was good.  However, the emptying test with solids is different and the body works differently to digest solids and liquids. 

For this test, Allie will be required to eat a normal amount of one of the following: oatmeal, hot dog or egg salad sandwich.  The biggest obstacle for this test is going to make her enough for the test to be performed.  After she eats one of the items, she will lay on the machine and they will take X-rays of her tummy for an hour and a half.  This test is not painful for her at all - just long because she has to lay still on the table for so long.  She's getting to be an old pro though - she's had her share of these tests. 

Allie's test will be on Wednesday at 7:45 am.  The doctor wanted to get the test in right away.  To my knowledge, this is the last test Dr. Brown has in mind in helping to diagnose Allie with a reason she doesn't eat.  I know it's a long shot but I'm hoping this one test gives us some answers.  Please pray for answers.

Overall Allie is doing good.  She's super excited for Santa this year and I continually have to remind her that's he's watching her.  Allie's behavior has been a bit challenging again, but we are dealing with it day by day. 

Here are a couple pictures of my two princesses:

My Little Miss

Little & Big

Everyone has a little silly in them :)

Monday, November 21, 2011

Weight Check

It has been one month since Allie has seen her GI doctor.  He is still having us go for weight checks so this morning, we headed over there.  Allie weighed 26.6 pounds - ugggg.....she lost weight.  At our last check up(a month ago), Allie was 27.2 pounds - so she lost 6 oz.  I cannot believe it.  Why does she struggle so much to gain weight - I just don't get it.

Allie did grow a little bit in height but she still should not have lost weight.  I'm nervous to increase her feeds because I don't want any vomiting but I'm thinking I might just have to bite the bullet and give her more feedings. She still on the blenderized diet plus we are adding Duocal to her blends. 

That's pretty much all I have today - I'm a bit discouraged because I work so hard at feeding her, and you tubie mom's know it's hard work to keep up with tube feedings day in and day out.  Allie goes back in to see her GI in a month and I'm praying she gains weight!

Hope everyone has a blessed Thanksgiving!

Monday, November 7, 2011

Quick Update

It's been about 2 weeks since I've updated and not a whole lot has changed.  Allie is continuing to do wonderful and handling all of her feedings.  We are still doing 4 feedings a day with 5 oz each time.  I am going to start increasing her volume intake shortly so maybe we can get down to 3 feedings, but we'll see. 

Allie is continuing with her speech therapy.  She started therapy through the school system a couple months ago and everything is going really well.  She goes to speech therapy once a week for a half hour.  Allie is making good progress and the therapist is impressed with her.  I think we still have a long way to go on her speech but seeing progress is very reassuring.

I heard back from the Dietitian at the Children's Hospital of Wisconsin.  After our last visit, they wanted me to email them her blenderized recipes so they could evaluate them and make sure they were nutritionally sound.  I had no problem sending them my recipes but I reminded them that I had worked with our Dietician through the Marshfield Clinic.  Anyway, I heard back from the Dietician at the CHW and she confirmed that everything looked great with Allie's recipes.  It was like icing on the cake for me to hear that everything was good with the recipes because after our last appointment, I think they were seriously questioning my ability to feed Allie properly.  Anyway, that's water under the bridge and i don't plan to swim in that water anymore with them :)

Allie's oral intake remains slow but steady.  There is no real development in it but it hasn't decreased at all either.  It's just very sporadic - that's about the only way I know how to sum it up.

Overall though, Allie is doing amazing.  Allie enjoyed about 10 minutes of trick or treating and then she slept through the rest.  Guess candy just doesn't entice her like the rest of us.  Here are a couple pictures of our Halloween this year. 

My little witches

Allie always referred to herself as "THE GOOD WITCH"

Chloe the "skull witch"

The girls getting ready for the neighborhood hay ride

Allie and I out trick or treating on the hay ride

The Berndt's - October 2011

Yup, that's Matt and I :)

Wednesday, October 26, 2011

GI Follow Up Today

Allie met with her primary GI doctor (Dr. Brown) today.  It was just a follow up appointment to make sure things are still going smoothly for all of us. 

Allie weighed in at 27.2 pounds and is 35" tall.  She's doing great!!  She's still quite short and is in the less than 5% but at least she's holding her own.

Allie started Cyproheptadine about a month ago.  This medication is suppose to stimulate appetite if used in very small doses.  Is it working????? It's hard to say because her oral intake is still so random.  There is however no doubt that she's eating slightly more than she did a year ago - so that's a plus. 

Until recently, Allie was drinking her elemental formula (pre-digested) E028 Splash, however she will no longer drink it.  She is now drinking chocolate milk and that's it.  Dr. Brown gave us some samples of the Boost Kid Essentials 1.5 cal.  Allie used to be on that stuff a while ago and she actually liked it.  We would also tube feed it to her but that's when she was vomiting at every feeding.  So, we'll see if she will drink it again - if so, that would be great because it's got a lot of the good nutrients and it's high calorie.

Allie's blenderized diet is still going great.  In January, it will be 1 year that she has been on the BD and VOMIT FREE!  Looking back, one of the most draining parts of Allie's journey so far has been the fact that she vomited every tube feeding for a little over a year.  Parents and children can only handle so much vomiting - my heart goes out to all the parents and kids who continue to deal with vomiting everyday. 

Two months ago, we started adding "Duo-Cal" to Allie's BD and to what she drinks orally.  So far it's given a nice boost to her calorie intake.  I have made the decision to keep her on it for now and see how she does with gaining weight.  Of course, she continues to struggle gaining weight so I'm hoping the Duo-Cal will continue to help us with this.  I don't like adding supplements to Allie's food but since I cannot increase her volume at this point, I need to make her food more calorie dense. 

So, our appointment went well - really nothing new happened.  It was a short and sweet appointment and Dr. Brown was very impressed with Allie's progress.   We go back in 1 month for a weight check and then we see him again in 2 months. 

We are going to continue on the path we are on and just pray one day either Allie eats enough calories or the doctors can figure out why she doesn't like to eat orally.

Allie brush your teeth!

Silly Chloe Ann

Monday, October 17, 2011

Blood Work Results

While we were at the Children's Hospital the other week, one of the doctors requested that Allie get a full panel of blood work done.  This was requested because Allie lost weight that month.  They were thinking she was dehydrated and malnourished.  They didn't come right out and say it to my face but they were implying it and were definitely not happy she lost weight.  Of course, I was more unhappy that she lost weight because I had worked so hard to make her gain.  I was mad they would even suggested that I would allow Allie to be dehydrated or malnourished - I love my little girl more than anything and I strive daily to keep her the healthiest that I can.  I of course agreed to the blood work because I knew it would prove she is healthy!!!!

I got the call last Friday with the results and here they are:

Iron - 70 (normal is 44-142)
Ferritin - 12.8 (normal is 10-60)
Hemoglobin - 12.1 (normal is 11.5 - 14.5)
Hematocrit - 35.8 (normal 33.43)
Electrolytes - normal
Metabolic Panel - normal
CBC - normal
Vitamin D - normal
Vitamin B12 - normal

Everything in the normal range!!!!!  However, they are saying her iron is a bit low and they want to discuss that with me further.  I have yet to call the doctor back, but according to these levels, I'm thinking she's doing great.  I'm going to get a copy of the blood results sent her to her primary GI doctor here in Wausau and see if he thinks her iron is an issue or not. 

So, as I suspected, Allie is doing great (inside & out).  We are continuing to keep her on 4 bolus feeds a day with 5 oz each time.  The BD is still working great for her and we have had no vomiting issues.  She no longer drinks the E028 Splash (predigested formula) orally, she only likes chocolate milk now.  I do sometimes use the E028 Splash in her BD though.  Allie started preschool and is loving it.  She also is fully potty trained now - finally!!!!  She's has grown up so much the past couple months it's amazing.  Of course she is still strong willed, demanding and down right sassy but would I really want it any other way????

Silly little Allie

Wednesday, October 12, 2011

Weight Check

Allie went in this morning to her GI for a weight check.  She started going during the summer when we did her tube wean but since she's been back on tube feedings, we haven't had any weight checks.  They called last week and wanted her to come in for a quick weight check - so we did.

I'm happy to say that Allie weighed 27.4 pounds.  That is the most she has ever weighed - YEAH ALLIE!!!  She was 27.2 pounds when we started her tube wean this summer so little Allie has gained all of her weight back and then some!  I'm so proud of her.

Last week at the Children's Hospital, Allie weighed 25.13 pounds.  I'm guessing their scale was off because when I weigh her at home, she is over that amount.  They were so concerned at the Children's Hospital because she had lost weight (according to their scale) this past month and they were telling me she must be dehydrated and malnourished.  Looks like maybe their scale just needed to be calibrated :)

Of course I will be continuing to weigh Allie at home like always - I am always looking for a celebration and Allie gaining any amount of weight it means for a "celebration"!

I am still waiting for Allie's blood test results from last week at the Children's Hospital.  I'll keep you posted.

Chloe & Allie in Uncle Mike & Aunt Shannon's new airplane!

The girls watching another plane take off

Thursday, October 6, 2011

Results of Gastric Emptying & Intestinal Follow Through Test

Yesterday, we received the results of Allie's gastric emptying and intestinal follow through test.  After her 8:00 am X-ray, we met with her team of specialist.  Both tests came back NORMAL!  This is what I was expecting and quite honestly, I would have been completely surprised if it wasn't normal.

So, with normal test results, this brings us no closer to an answer but that's okay.  We are going to continue to do what we are doing and pray she gains weight.  Allie actually lost weight this past month - she lost 3 oz.  It's not a lot but for all the calories she's receiving through her tube feedings, she should have gained and not lost.  Allie is still not back up to her weight she was before we tried her tube wean this summer - it's just such a struggle for our little peanut to gain!!!

After talking to the team of specialist about her normal test results, Matt and I expressed our concerns about proceeding with her endoscopy and botox injection scheduled for today.  We just didn't feel there was a good enough need to put her under anethesa again.  It's never easy putting your child under when there is a need but I have been second guessing this surgery/procedure since it was scheduled.  So, I followed my motherly instinct and expressed my concerns.  Dr. Tipnis agreed to cancel based on our concerns.

Before leaving, Dr. Tipnis ordered extensive blood work so we headed to the lab.  Allie's biggest fear is "men" and her second biggest fear is getting blood drawn.  She screamed from the minute we walked into the lab till the minute we walked out.  She did good though - she was just crying and screaming because she was nervous, scared and mad.  As she get's older and understands more, all the pokes and prods get so much worse.

After her blood draw, we packed up and headed home.  We got home yesterday afternoon and now we just wait for her blood test results.  They are checking her CBC and all of her chemical panels.  The Dietician there is very concerned that she dehydrated and somewhat malnourished.  She is thinking this because she actuall lost weight.  We'll see - I honestly think she's very well hydrated and her nutritional status is great.  The blood work will show the true results.

So, back to square one and we will continue to chug along. Allie is doing great and so happy to be back at home.  She hates the Children's Hospital and when we walked out of there, she said, "I'm never coming back here again".  She's in control of that - all she has to do is eat orally - think she'll do it????

Here are a couple pictures of Allie getting her test on Tuesday.

Allie loving her new bunny from the Kwick family - thank you!!!

Allie during her gastric emptying and intestinal follow through test

Back at the hotel after she got her blood drawn - very unhappy little girl


Tuesday, October 4, 2011

Gastric Emptying Test Done

As usual, miscommunication with the staff at the Children's Hospital is usually one of our biggest obstacles.  Allie's gastric emptying test began with numerous pages to doctors and specialist. Allie's order stated she needed a gastric emptying test done with liquid.  This is not what the doctor and I agreed to at our last visit.  Allie was go be fed her blenderized diet and this would show us how her stomach empties with solid food.  We know her stomach empties okay with liquids.  However, the nuclear medicine they use to follow through her system won't attach to solid food so the intestinal transit part of the test had to be done with liquid.  I was mad - this is not what Dr. Tipnis and I had agreed to, however if we wanted to check to see if her intestines are working properly, we had to do the test with liquid.

Another thing I was upset about is Dr. Tipnis told me he wanted the test done here because they now do a new type of gastric emptying test.  With the new test, children don't have to lay on the table very long.  The children are able to get up and move around but come back for an X-ray of the stomach every half hour.  Well, that wasn't how it worked.  They used the same old test of making the child lay on the table for 1 1/2 hours straight.  I was not happy!!! 

One more miscommunication - I received an email from Allie's nurse stating the times we would have to return to X-ray throughout the day for another scan.  We were to return there every hour until 4:00pm.  Once we started her scans, the tech said we didn't have to return until 2:00 and after that we were done.  Nothing we talked about at our last doctor appointment turned out right - it makes me very frustrated.  I guess this is just another reminder of why I originally moved her care out of the Children's Hospital of Wisconsin!

Okay - now that you've read my soap box, I"ll get to the important stuff.......

Allie did great with her gastric emptying test - she even actually drank about an oz of the Gatorade with the nuclear medicine in it.  The remaining was put into her tube.  She laid on the table for the 1 1/2 and cried on and off the last half hour.  It was a long time for her to lay there but we were prepared with movies.  Allie wasn't scared for the test but just mad because she had to lay on the hard table for so long. But she did awesome!!!  We left the hospital around 11:00 and didn't have to return until 2:00.

Allie's second scan only took 5 minutes so that was great - she didn't mind that at all.  After that, we checked into the Extended Stay hotel.  We were not able to get into the Ronald McDonald house today but we are still hoping for tomorrow.

Tonight we took Allie to Chucky Cheese.  We had never been there before and Allie had a blast.  She loved playing all the games and riding the rides.  Now we are back in the hotel just relaxing.

Tomorrow Allie gets her final X-ray to end her intestinal follow-through test.  After that, we meet with her team of specialist to go over the gastric emptying results and intestinal follow-through results.  We will also be discussing her endoscopy and botox injection schedule for Thursday.  Matt and I are thinking that if her stomach is emptying okay, there is no need for the botox injection - we'll see what Dr. Tipnis has to say.

So, our day went well and Allie was a champ through everything.  Glad today is over but I'm really dreading Thursday!  Thanks for keeping Allie in your prayers - you guys are great!!!!

Monday, October 3, 2011

Made it to Milwaukee

It's 9:00 pm and we made it to Milwaukee.  Unfortunately, we didn't get a room at the Ronald McDonald house but there is always hope for tomorrow.  Thanks to Matt who wanted to try a "different" hotel than our usual one, we are staying in a Day's Inn which is a complete dive.  I guess you cannot expect much for $55.00 a night :)

Allie is very nervous for tomorrow.  She keeps asking if we are going to the hospital yet.  I kept explaining to her on the way here that tomorrows testing will not hurt. Mom will be feeding her a normal bolus feed with her BD (except they will inject her BD with radio active material and she will receive her feeding in radiology), after that, she will lay on a table for 1 1/2 hours and they will take constant x-rays of her stomach. After that, Allie will return to radiology every 1/2 hour for additional x-rays.  Allie thinks it's funny that they will be taking pictures of her belly - that's about the only thing she thinks is funny about this whole thing.  I'm sure the gastric emptying and intestinal follow through test will go well - at least I know it won't be painful for her.  I'm sure making her lay on the hard table for an hour and a half without moving is going to be tough but we can handle that - as long as the pain isn't bad :)

So, tonight we are staying in our little Day's Inn Dive and relaxing.  Allie is playing with her little people on the floor and I'm just about ready for bed.  I'm nervous myself tonight - it's always such a emotional rush going back to the Children's Hospital, especially knowing we will be here for several days.  As always, we will go through this with confidence and we will continue to pray that this procedure and surgery leads us into the direction with answers.

I'll keep you updated on how little Allie is doing.  I'm expecting my little princess will do wonderful tomorrow!!!

Thursday, September 29, 2011

Overdue Update

It's been a while since I"ve updated - seems as if time is going bye too fast. 

Allie is doing well.  Since our appointment at Children's Hospital the beginning of the month, we are slowly increasing her volume intake.  She was at 4 oz for each feeding and she is now up to 5 oz.  It's taken us a long time to get her here and there are times when I get done feeding her that she's gagging and telling me I fed her too much.  She doesn't actually throw up but it's close.  5 oz is the most she has ever been able to handle at a time - for her age, she should be able to easily handle 8-9 oz.  We will continue to work on it because if sometime down the road we want to enroll her in the two week feeding intervention, she needs to be able to handle more than 5 oz of food at a time.

Besides increasing her feeds, she is just getting over strep throat.  She had a nagging cough about a week or so ago.  I decided to bring her in and have her checked because she never shows normal signs of strep throat.  Sure enough, positive.  Good ole antibiotics took care of it though and she's feeling great.  Chloe also had it but she's better now too.

We are gearing up for next week.  We are heading to Children's Hospital of Wisconsin for testing for Allie.  She will have to be at the hospital Tuesday, Wednesday and Thursday for testing.  Allie will be getting a gastric emptying test (with her BD) and also an intestinal transit test.  She will also get an endoscopy with biopsies and a botox injection in her pyloric valve.  Praying the week goes smoothly :)

On a very positive note, Allie seems to be eating a little bit more these days.  She's really into the growing big scheme so every bite she takes, she climbs on the counter and says, "look how big I'm getting mom". She's so stinken cute!!!  It's nice to see her associate eating with getting bigger and stronger.  However, her growth is still a bit slow and the weight gain continues to be a struggle.  We'll get her there though.

Thanks for checking in and please keep Allie in your prayers for next week while she goes through additional testing, procedures and especially anesthesia.

Here are a couple pictures of the girls playing in the rain :-)

Friday, September 9, 2011

Upcoming Tests

In meeting with Dr. Tipnis (GI at Children's), he is recommending we do a couple more tests for Allie.  He thinks a lot of Allie's eating problems and low tolerance volume has to do with her gastric emptying.  Of course we don't know this for sure.  Allie has had two gastric emptying tests done previously and the first test showed a significant delay and the second test showed a slight delay.  It has been a year since she had this test and previously, the test was performed with liquid.  Now that Allie is on a BD, her stomach could be emptying completely different than before.

So, Children's Hospital of Wisconsin is now performing a new type of gastric emptying test with solid foods. Dr. Tipnis would like Allie to get this done.  In addition to this test, he will also do a small intestinal transit test which basically is going to follow the food go through her intestines and this will help determine if her intestines are working properly.  These two tests will take 6 hours.

In addition, Dr. Tipnis wants to do another endoscopy on her to look for eosinophils in her esophagus and stomach.  He would also like to give her a botox injection in her pyloric valve in case her valve is becoming week and that is delaying her emptying.

Since Allie can only handle a low volume of food through her tube at a time (4-5 oz), Dr. Tipnis seems to believe that:
1) Allies stomach doesn't stretch
2) She could have a neurological reason that her stomach doesn't stretch
3) Her pyloric valve doesn't open properly

There is no test to determine if someones stomach stretches or not, so the tests mentioned above are the next best thing. Dr. Tipnis would like to get these tests scheduled early October.

I haven't read a lot yet about the botox injection in the pyloric valve but if you or your child has had this, I would love to hear how it worked out. 

So, if we proceed with all the testing Dr. Tipnis is recommending, Allie will have a busy little schedule for a couple days. 

In the meantime, we are working on trying to increase her volume tolerance and we are increasing her feeds from 4 oz to 4.5 then 5 oz.  Of course the trick is to do this with NO VOMITING!  She's being a champ like always!