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 :)