Sunday, December 19, 2010

More doctors for Allie tomorrow

Allie bounced right back to her normal self after her surgery on Friday.  By Friday evening, Allie was happy and playing like normal.  Allie was more tired than normal but besides that, you would never have knows she just had a endoscopy and colonoscopy.  Kids sure bounce back quickly.

Since Allie was feeling so good, we decided to head to our hometown (Escanaba) and start celebrating Christmas with the family.  We celebrated with Grandpa Dave and Grandma Dori on Saturday night then Great Grandma Saari on Sunday morning and finally the whole Delmont group (30 of us) on Sunday afternoon.  It was a quick trip home but it was great to see everyone again.  We got back into Wausau tonight around 8:00 or so - we are all settled back in and the girls are snuggled up in bed. 

Tomorrow is another big day for little Allie.  We are leaving for Marshfield in the morning because Allie has an appointment with her new Dietician at 11:00 am.  I'm very anxious to meet the Dietician and see if she has seen anyone like Allie before.  I cannot wait to discuss Allie's needs and see if she has any suggestions on her tube feeding schedule that might make life easier for all of us.  Like Matt and I discussed tonight, we cannot continue on with Allie like this.  She hates her tube feeds so much and her fighting each feeding is draining us.  I told him that I cannot do this much longer.  I know she needs her tube feeds to survive and OF COURSE I will do what I have to for her but we need to get to a point where she doesn't fight us so much when it's time for a feeding.  The emotional aspect of it is draining for me and I know it's draining for her too.  At this point, Allie prefers bolus feeds over her pump and backpack but she just cannot handle the volume of milk required at for each bolus feed.  Today for example, she drank some of her Boost Kid Essentials milk orally so she only needed 4 oz of Compleat Pediatric food.  Matt bolused in 4 oz and she threw up 2 ounces 5 minutes after her feeding.  Her little tummy just cannot handle 5 oz of liquid at one time.  Anyway, I'm hoping the new Dietician can help us come up with a new feeding plan - something that will work a little bit better for our family.

After Allie's Dietician appointment, we are heading back to Wausau and going to meet the ENT doctor.  Allie starts her allergy patch testing tomorrow afternoon.  I'm praying this patch testing going okay for Allie.  I have talked to several people and each one of them indicated the test was traumatic for their child.  I have actually thought about cancelling the testing because I'm not sure if Allie (or me) can handle much more , but the drive in me keeps pushing.  You just never know when "that one test" is going to provide the answers we need.  So, we will continue on with the testing and pray for the best.  Pray that the 4 days of wearing the patch does not traumatise Allie, however we also pray that it helps us find some answers.

I was reminded today of how abnormal Allie's appetite really is.  Matt and I are to the point that if Allie chooses not to eat, it's okay because she gets her tube feedings.  We know she is getting all of her nutrients through her tube.  My dad on the other hand is still trying to get Allie to eat.  Bless his heart for not giving up but he's not making any progress either.  Actually, Allie is eating less than she did 6 months ago or even a year ago.  She goes through spurts of eating a little more but then slowly goes back to not eating.  Anyway, my dad tried so hard to make Allie eat breakfast with him.  Then he tried again for lunch.  He didn't understand how she didn't want my mom's homemade pot roast with potato's and carrots.  He tried everything to make her take a bite and she just simply refused each time.  Finally my dad gave up and ate Allie's portion of the roast.  For supper, we were celebrating Christmas with the Delmont's and my dad is sitting next to Allie.  I fixed Allie's plate and she got a heaping blob of cool whip and 1 pickle (and her feeding pump).  Again, my dad tried feeding Allie.  He tried sneaking beans or pieces of meat dipped in the cool whip but Allie knew better.  She could tell each bite that wasn't just cool whip and she refused it.  In the end, Allie did eat one little bite of a baked bean and then all of her cool whip and the pickle.  That was a good meal for her.  My point though is that I thought I was basically numb to Allie not eating but seeing all of this today just reminded me that it really does still affect me.  It makes me sad to see everyone else eating and Allie not enjoying food.  She has absolutely no interest in it and it just doesn't make sense to me.  I get upset because I'm mad at the doctors for not being able to figure this out for her.  With all the medical technology available these days, how can they not figure out why a little girl won't eat.  Why can't they figure out why her little tummy cannot handle 5 oz of liquid food at a time.  Why, why, why - I could go on forever!!!

With the patch testing alone, this is a big week for Allie.  At least her big week will end with a big boom - Santa coming!!!  The girls are getting very excited for Christmas and so are we.  With all the medical drama happening in the Berndt house these past couple weeks, my Christmas spirit has disappeared dramatically.  I have a lot to be thankful for so I'm counting my blessings and putting a smile on my face. 

Our life may not be perfect but it's the perfect life for us!


  1. Oh Matt & Jodi,
    My prayers go out to you all,I know how frustrating this all is,it reminds me of the day's we went threw Jaylene's asthma attack's .It was so frustrating that the answers were not black & white.We put Jaylene threw the allergy tests because I wanted answer's,we did make progress with the answers for the most part,we knew some of her triggers, so we avoided them.Her attack's were more manageable,we also had a pediatrician who was a smart man.When her doctor announced he was leaving ,I was devastated,I prayed for a miracle,one was granted,she out grew her asthma.
    Now she is looking at running a full marathon,but I thought I never survive at the time,so hang in there ,keep looking for an answer,I'm praying that the tests help you out(Jaylene's triggers were milk product's,walleye,tuna,smoke,molds,some wood)the test was not fun going threw,especially since they are tried of doctors,it gave us some direction.
    Jaylene now works with her doctor,even though she doesn't remember all this trauma very well.I told her she needed to give this man a big hug because he saved her life many times when other doctor didn't know what to do for her.We were blessed we were guided to him.
    I pray for a miracle to come your way...

  2. Thinking about you guys today...anxious for some news!