St. Mary's Intensive Feeding Evaluation

Friday, March 7, 2014

In the NICU and post-NICU, feeding is often one of the hottest topics.  It's an issue that the rest of the world doesn't get.  And I'm so thankful for that.  Truly thankful.  Trust me, this world would be a much crazier place if we all had Mama's running around whose kiddos had severe feeding intolerance/disorders. 

Watching your newborn baby fight for every breath of her life for months on end was one of the most traumatizing and saddest experiences of my life. 

Watching and trying to get her to eat has been the hardest experience of my life.  It has been a 3 year battle.  It's relentless and never-ending.  But I do see a very faint light at the end of the tunnel. 

So many have asked, "How did it go?  What do you know? When will you go?" 

The short answer, "It was awful and wonderful wrapped into one."

And here's your long answer....

(a short refresher on why Alli doesn't eat today)

1. Extremely premature and sick when born, suck/swallow/breathing is instinctive for healthy newborns.  It would be nearly 4 months before Alli was able to attempt bottle feeds
2. Cerebral Palsy: CP impacts the coordination of oral movements and has severely impacted her coordination of the swallowing mechanism.  Basically, she can't even swallow her own saliva.  :(
3. Severe oral aversions
4. Severe facial defensiveness
5. Severe sensory processing
6. Oral dysphagia, swallowing disorder
7. Adjustment disorder (basically anxiety with eating)
8. Post traumatic eating disorder in childhood
9. Chronic lung diseases (she has 3): This has limited her endurance to actually eat.
10.  I could go on with about 10 more diagnoses associated with her feeding, but I think you get the picture :)

John and I made the 6 hour track across Missouri, southern Illinois, and into Indiana.  I think it's so funny that I have connected with experts all over the world.  Literally.  And everywhere in between.   In our last battle with insurance I said, "It's Indiana.  It's not like I'm trying to take my child to a feeding program in Maui." 

Which by the way....That's actually a phenomenal idea.  6-8 weeks in Maui for my child to learn how to eat??

Sign.me.up.

We met Wednesday morning with great Thanksgiving for the fact that Alli was even in a position to be evaluated for an intensive feeding program.  She's been deemed too medically fragile and too severe of a case to benefit from a program in our two years of attempts to find a program.  In 2012 her oxygen requirements and respiratory status were our primary focus.  In 2013, after hearing she was medically and developmentally in a ready position, other issues were uncovered and we pulled all attempts at oral feeds and started over.  Starting over was hard, but Alli made great strides in 2013 and into early 2014 simply tolerating touching foods/different textures/etc.  She was also attempting to take a few bites, just recently, by mouth.  Granted those bites had to be snuck in and she rarely swallowed them, I felt we were making very small steps forward. 



So here we finally were.  So much hope.  So many prayers.  So much riding on the potential behind these doors.

As I stated on my FB it was 3 1/2 hours of absolutely awful and absolutely wonderful wrapped into one.  We met with the child psychologist and director of this program, Dr. Clawson, along with an OT, Speech therapist, and dietician.  We spent the first hour + some going over her medical history and where she is currently today.  I then had to attempt to feed Alli, while a room of experts watched, analyzed, and made notes over every little thing.  Talk about nerve-wracking.  I don't get nervous, but that was just plain awkward.  After, the speech therapist and OT worked with Alli a bit, attempting to assess her palate, tongue, her bite, her "cans" and "can'ts", etc.  We were sent to the family lounge while they all debriefed. 

When they came back, I asked, "How much of a hot mess is she?"  They all laughed and agreed she will be an extreme challenge, but was not a lost cause.  Hearing the words, "we hands down believe she would benefit from our intensive program" was like hearing angels sing.  For the first time, we sat with a team that we truly felt could help her!!! I held my breath and bit the side of my mouth as she went on to explain all the "buts."

"This will take years."

"Alli will require multiple intensive sessions."

"I want you to pull ALL attempts to orally feed."

Did I honestly think we would be 3 years into this journey and we were once again told to pull ALL attempts at orally feeding Alli? 

Ummmm. Big.fat.NO. 

Did I honestly think Alli would participate in one 6-8 week intensive and come home eating like a "normal" 3 year old?

Again.  Big.Fat.NO.  But neither of us, were prepared for how extensively intensive of a process this would be. 

A FB friend of mine, whose son is similar to Alli, and he has gone through a similar program said it best, "They will reset her...they will start all over again and teach her how to eat without any behaviors she's learned along the way. It's absolutely amazing and it does work! I wouldn't have believed it if I didn't see it with my own eyes. Hang in there!"

And I think that's the best description.  "They will reset her." 

Our plan and when we will go, you ask??

Our FIRST priority is Alli's stem cell treatment.  Following her stem cells, we plan to get her to the NAPA Center in Los Angeles for their 3-week sensory integration intensive therapy program.  The program will involve NeuroSuit Therapy... The Listening Program, Music Play therapy, social and behavior skills therapy, sensory diet, along with Vital-Stim Therapy (for her swallowing disorder) and Hyperbaric Oxygen Therapy (HBOT). 

Timing is everything right now.  We're still waiting on dates for Houston, so all treatments are pending those dates.  Our hope is to have her first round of feeding therapy completed within 6 months of her stem cell treatment.  The theory is from the date of stem cell treatment to the 6 month mark has to most potential in regenerating the dead white brain matter.  Anything we can do to facilitate that healing and laying down of new neural pathways, we're going to do.  We're praying for God's perfect timing and wisdom as we begin to schedule these treatments.  We covet your prayers as well!  Alli's team of prayer warriors have been so faithful and we know you will continue to be. 

While you're praying, please remember Anna Claire and Ava.  It's a super tough job being special needs siblings.  Although, this is has been and is our life now, it doesn't mean that it ever gets easier for them when I have to be gone so much. 

Much love, 
Jackie







 
 
 








     
 
 
 








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