Clinic 4 Kidz Update

So it looks like my insurance is going to offer some sort of coverage... we should find out by Tuesday what exactly that coverage will look like!  But this is great news!!!!  Since coverage is looking good so far, the Clinic was comfortable getting us scheduled as soon as possible.  As I said before, the clinic has a current 6-8 month waiting list, and the earliest they were able to get us in in an emergency spot is for the week of July 8!!  Even though this is 5 weeks out, we are so thankful that we will at least be getting Abby into the clinic that we think will be best for her (opposed to the Los Altos Feeding Clinic!).  We will have an initial evaluation next week on June 6th - this is where the team comes into our home for a 2-3 hour evaluation and will hopefully give us some tips that we can work on with Abby until our therapy week in July begins.

Now, since there will be a 5 week wait, we were nervous about the GI doctor wanting to get Abby started on the feeding tube.  We have been praying through all of this that the Lord would give Abby's doctor wisdom in guiding us, and we are very thankful for this doctor as she's been great (Dr. McCracken for any bay area parents looking for a Pediatric GI!).  So I called Dr. McCracken today and told her that we will begin therapy on July 8th, but will be doing our evaluation next week, and we told her that we really wanted to avoid the feeding tube unless it was absolutely necessary.  She said let's see how the evaluation goes and how Dr. Patel feels Abby will do with the tips she gives us to work on, and then we'll go in for a weight check on June 10th with Dr. McCracken and she will decide if we are good to hold off, or if we need to proceed.  It was very reassuring to hear Dr. M say that she did not want to do the tube either as it will even further Abby's oral aversion, but if Abby starts to lose more weight then we won't have a choice.  She currently has not gained any weight, but at least she is maintaining and not losing!  And now that she's walking, she's burning more calories...eeek!

I will continue to keep you posted as things continue to progress!  We appreciate all of you who are supporting us through this time :)

Adios!

Latest Insurance/Clinic Update

Hey everybody, thank you so much for your continued prayers!  Just wanted to send out a quick update on where we are at right now.

On Friday the provider (Clinic 4 Kidz) submitted all the paperwork to Blue Shield (BSC) and we told them this needed to be expedited.  Since Monday was a Holiday, the clinic called in today to check on the status. Welp, lovely BSC now tells us that in order for this request to be expedited we need to fill out more paperwork.. UGH! Why they didn't tell us this on Friday, beats me...but they at least earned an earful from me... ;) So the Clinic has now submitted the expedited request paperwork and BSC has 72 hours to give us an answer if they will be pre-approving our request for coverage into the clinic.

I'm not digging the 72 hours, we don't have any time to waste, so I've been sending emails and calling people for the last few hours!  I have first hand contact with some high up people at BSC thanks to my employee's insurance Broker (so awesome!), so I told them this needs to be done yesterday, but I'll give them 24 hours! Let's see if they comply... hey it won't hurt to ask right!?

On the Clinic side of things... the doctor was not able to get us into the families spot that was scheduled for this coming week, but the good news is Dr. Patel is still fighting for us and is trying to get one of the clinic case managers to rearrange their schedules so they can come see Abby.  We will see Abby's GI doctor on Monday, June 10 for a weight check and to make decisions as to what's next.  The GI wants to see Abby beginning a feeding therapy program by then, else the feeding tube will become a necessity.  As of right now, Abby has gained no weight in the past 2 weeks.  It looks like Abby was starting to eat better, but this has been back and forth, no consistent improvement quite yet.

Please continue to pray, first and foremost that Abby would begin to improve her eating and begin to gain weight and nourishment!  And we ask that you pray that if it's God's will, that Abby will be able to get squeezed into the clinic, some way some how - hey we serve a mighty God - nothings too hard for Him!

And to leave you with a happy note - Abby has started taking her first steps!!! Here's a little video from earlier today! YAY!

 

Feeding Clinic in Bay Area Evaluation

What to know when looking for a feeding therapist/specialist for your child:
When seeking help for your child with a feeding disorder it is very important to make sure the therapist/specialists are a licensed and or certified professional.  Being a BCBA (Board Certified Behavioral Analyst) is of extreme importance when looking for a feeding therapist working with an emphasis in behavior analysis (Occupational Therapists and Speech and Language Pathologists will of course carry their own certifications/licenses).  This certification holds them to specific standards in the field of applied behavior analysis, whether disciplinary standards, ethical standards or any of the like, you can visit the BCBA website to find out how being board certified is a must when looking for behavioral feeding treatment for your child.  If the therapist is not a BCBA, the other licensing/membership to look for is a APA membership (American Psychological Association) - this makes you a licensed psychologist and also holds said member to specific guidelines and regulations.  Be sure to do your own homework - there is never an excuse to dismiss proper professional certification/licensing. Ask the question.

Start of my review:

Today we took Abby into a feeding clinic in the Bay Area for an evaluation.  I pulled into the parking lot, took a look around and didn't quite know what to think.  The clinic was in the middle of an older looking plaza type strip..almost grungy looking, and the door to the clinic says "Please Remove Shoes" - huh, is this for reals?  

Once inside, the heaters on pretty heavy (ugh here come the hot flashes!), and no one is in the room. There are two doors but none that say "Come in" or "We'll be with you shortly"...nothing... ugh, okay I guess I'll just um..stand here.  At least inside it looks pretty kid friendly, and freshly clean (okay now I see why they want you to remove your shoes!), definitely much nicer inside than outside!

At about 3pm, the feeding specialist walks through one of the doors, we tell him who we are and he hands us some paperwork to fill out, then turns back around and goes back through mystery door number 2.  There's a lot of papers... whatever sign away!  Before I can finish filling out all the pages (theres about 10+!) he comes back out and starts to ask some questions, most of which I was just answering in the paperwork!  

After we finish answering some questions he says it's time for me to feed her so he can see what she does.  Well guess what, Abby decides to eat like it's no big deal...of course this happens!! We gave her some strawberry greek yogurt which she ate great (this never happens!), we gave her some baby food peaches, which she never eats, and she ate a little, then we gave her some baby food sweet potatoe and she pushed it away... so he did get to see a little glimpse of her behavior but not much.  As I was feeding her, we asked him more questions, and to be honest, it was at this point that we both knew this was not the place for us.  I asked him how they address children who have sensory issues/aversions to food, whether by taste or texture or temperature, and his response was "I don't know what that is?" then I said, "You mean you've been doing this for how long and you've never heard of a Sensory disorder?" and he says "I have heard of it, but I don't believe in it." Ok..... mmmm, I think that's our queue!

Another thing that had us unsure of this clinic for Abby was that they work with the child in a separate room, away from the parent.  The parent gets to watch what's going on through a TV in the lobby.  Not sure we felt comfortable with that, putting our child in someone else's hands to feed, especially when she's already so fearful/averted to eating, and just sitting back and watching.  

We were pretty bummed with the whole experience but we know God has a plan. 

That's it for now... 

Good Night!

A Call to Prayer - Feeding Clinic Update

In yesterday's post I had let you know about the Clinic 4 Kidz feeding clinic, well I heard back from them tonight and we ask you to all join us in prayer... you'll see why after I explain what's going on.

Dr. Patel, the Director and Behavioral Therapist at Clinic 4 Kidz responded to my email last night and let us know that she would be calling me tomorrow (which is today) to talk, but had to let us know that there is currently a 6 month waiting list to begin their program.  Well she called a few hours ago, and we talked about Abby's history, what's been going on with her food refusal and just the critical position we are currently in.

First of all, she totally related with me because she went through a very similar journey with her son.  Second of all, she let me know more about their philosophy and their approach and it sounds much more like what we would like to pursue for Abby (they have results with a 96% success rate).  Third, they ACCEPT insurance and work closely with insurance providers to get coverage (still a battle, but they seem to have success!), and they will get "in- network" coverage which means our out of pocket cost will not be more than a few thousand dollars (PRAISE GOD).  And lastly, (here's where those prayers would come in)... there is currently a 6 month waiting list, BUT because this is such an urgent need and we are trying to avoid a feeding tube, she is going to try to see if she can find a way!!!

Prayer Requests:

1.  My insurance would accept the request for treatment and agree to cover the costs and that this would happen quickly.  Normal response time is 2-4 weeks, but we are hoping for just days.  The clinic needs to know that insurance will cover the treatment before they begin. (I should be hearing from the Clinic's office manager tomorrow morning, they will let us know what steps we need to take to submit this request to our insurance company).

2.  If it is the Lord's will, that they would be able to get abby in!

3.  God would continue to give us wisdom and peace and open the doors for us to be able to go to this clinic (well the great thing is that this clinic comes to us!).

Should we begin treatment with the Clinic 4 Kidz they come to our house for 5 days and are here at our house 10-12 hours a day, they not only want to work with feeding, but they want to get to know Abby and our family so that they can build trust with Abby.  Please join us in prayer as we trust that if God wills us to get into this clinic, He would begin to orchestrate everything!

Here is a picture of one of Abby's swim class buddies - this little girl is only 4 days older than Abby... so this should put into perspective how "mini" Abby is.. eek! And this girl is in the 50th percentile for her weight and such.... And yes I know some of you say she's just "petite", but petite babies still grow, and Abby just is not.

We also want to say thank you to all our family and friends who have reached out to us to let us know you are praying for Abby and us!  All the emails, messages, texts, aunts (and my mom) letting us know they can take time off work to help us...even had one special Mama tell us she would fly from out of state to come help us when it was time to start feeding therapy - we love you Mama Rosie!! We know that though this is not something we'd like to be going through, God has continued to pour His love out on us and let us know "I will never leave you or forsake you."

Thank you all, we love you and appreciate you! Keep those prayers coming!

Keeping Psalm 46:10 in our minds ... "Be still and know that I am God"

Abby's crazy hair after a nap -
we love you so much little girl!!

Love,
Mama, Papa & Baby Bear ;)

A Crossroad: Feeding Clinic or Feeding Tube - Now A Necessity

Today has been an emotional day for us. We saw Abby's GI this morning and she gave us the news we've been trying so desperately to avoid: feeding clinic or feeding tube, make a choice!

Abby weighed in at 14 lbs 13 ozs and 26" long. Last month she was 15 lbs even and also at 26". Since Abby has now begun losing weight and her growth is stunted (no growth with her height in 3-4 months), the doctor says we have to take drastic measures before her lack of eating starts to stunt her brain development. She has given us 2 weeks to get therapy started via a feeding clinic or else we will have to hospitalize her for 3+ days with an NG feeding tube. :( Not good news, not good news at all.

I have made several phone calls today.  I have emailed and left a message for a feeding clinic, Clinic 4 Kidz.. Still waiting to hear back. In the meantime I will need referrals to begin evaluation/treatment with both clinics, and I will need to assemble proof that this is an urgent medical necessity to submit to our insurance to find out if there is any way we can get some insurance coverage on these clinics, as the clinics themselves do not accept insurance (this is beyond me why they would do this!? Who has $10,000, $20,000 and up laying around!?).

We would like to avoid a feeding tube if at all possible as it is likely to cause more problems than it solves! This has all been so stressful and emotional for us to go through and we want nothing more than for Abby to be healed and not need such drastic interventions. But we serve a mighty God and we know He is in complete control. Having to go through something like this has number one been very hard as any parent hopes for a healthy child, but it has also made us more aware of what really matters in life and puts things into priority/perspective.  All the odds and ends, the things we thought were "important", the drama of strained relationships, the "stress" of work have been slammed to the ground and our focus is on God, and on Abby.

I will keep you posted as we learn more information!  Please continue to pray that God would give us wisdom, discernment and peace in selecting the feeding clinic that is best for Abby.

Blessings!
Mama Bear

And Then Some Days She Eats

This girl has me so confused with what the real underlying issue is with her not wanting to eat, because every so often, she will eat good!  Tonight was one of those nights!  She ate about a table spoon and a half of refried beans, half a large strawberry, and a chunk of pizza bread - this was all within about 45 minutes!  It makes me so happy to see her eat this way, but it also makes me nervous, because she has a tendency to vomit on those few days where she has eaten good!  Praying all those calories stay down! :)

I really wonder why she has days when she wants to eat (maybe once every month or two!), and then all the others not.  It also makes me think that she does not have oral sensory aversions, since she just ate so many different textures and not once did she gag or spit it out! So so confused! :/

On a good note, after I wrote the above two paragraphs I went to put her to sleep and she did not throw up! Whoo hoo, praying it stays that way!

My mom has been a great support in researching alongside us and wanting so badly to see Abby eat and eat well consistently. She has new feeding gadgets and books sent to us pretty much weekly, as well as doing her own homework and reading up, mainly on sensory related feeding disorders.  Her newest thought was to buy Abby a baby doll that you can pretend feed with a bottle, sippy cup and also has a bib and pacifier!  Abby was playing with the doll most of the night and it was funny to see that Abby was walking around with the babies bottle acting like she was drinking it!?!?!? Yea, even more confused now! Haha! But it was cute to see her give the baby the pacifier and bottle, etc... maybe she will want to be just like baby! I'd "nurse" that baby too if it encouraged Abby to nurse more! hahahah... okay I won't imagine that!

Abby giving kisses to her new baby doll from Grandma.
Don't mind the silly headband, daddy likes to put
mommy's headbands on Abby! :)

Okay, that's all for today!  Let's see if this improved eating stays in effect tomorrow as well! Fingers and toes crossed... okay that's not going to do anything.. but we are praying! Our God is Greater, our God is healer, awesome in power our God!!!

Nite Nite

Back to the Beginning: Abby's Birth Story

Today has been one of "those" days where I want to bang my head on the wall  I have no energy left.  The little booger refused to nap today and didn't want to be held, but didn't want to be put down... what do you want little one!? LOL  So in lieu of my brain not wanting to think, I decided to write more of a fun post and take it back to the beginning and share my horrible labor pains Abby's birth story.

It all started at 7:30am on Thursday June 21, 2012 - my contractions started at about 2-8 minutes apart and never really veered from there.  I was a bit surprised as we were told early labor contractions are 10-20 minutes apart...just goes to show you, EVERY one is different.  Contractions definitely were painful from the get-go, and lucky me had back labor and frontal labor pains - it was coming at me from all directions!  The contractions were only lasting 30-45 seconds and I could talk through most of them, so I knew I was a ways away.  Matt and I were set on going through labor naturally and wanted to stay away from any interventions - so I wanted to stay home as long as possible!

My parents came over to bring us dinner that night, as we were both pretty exhausted.  Since I was having such bad back pains, Matt had to massage my back every contraction. Poor, poor Matthew ;).  I was also pretty vocal with each contraction, there goes my dream of relaxing and singing cumbaya through contractions like those dumb birth videos we watched! Yea right! LOL.  That night, or I should say the next morning, around 2am, my contractions were picking up in length and were getting to be about 2-3 minutes apart.  Matt was getting nervous and told me we should go to the hospital but I told him NO I'm not ready, I know I'm not close yet.  Well, Matt couldn't wait any longer and he called my mom to come with us to the hospital, since I needed my back rubbed and someone had to drive the car! Also, mom was on duty to help me labor when Matt needed a break.

So what happens?  We get to the hospital and my labor backs off.. I told you I wasn't ready!!.. in the meantime they get me in a room to check me out.  I was dilated to 3cm's but of course they tell me that I cannot go home because the baby's heart rate was dropping with each contraction.  I got mean at this point and told the nurse it was because she was making me lay down in order to monitor the contractions!  Finally they let me get off my back - I couldn't stand it any longer, but the bad part was the two monitors they put on me had to be in exact specific positions in order to pick up signal ... one for the contraction, the other for the babys heart rate.  I was so uncomfortable and just wanted to go home.  My OB was to be back in town from vacation that morning Friday, June 22, so I told them to call her ASAP!  Thank goodness she came to check on me at 8am and she said I was FINE but just as a precaution I should go back in 24 hours to do a stress test - wait what!? won't I have this baby before 24 hours is here!??!?!?!  I left the hospital to go home at 9am...and I was then at 4cms.

All day long on Friday I labored at home... going for walks, leaning against the couches, on my bed, on the ball, in the shower, in the tub, I would have done a head stand if I could to ease the pain... oh my word! I felt like my pelvic bone was being pulled up and over my head! WOWZERS!  Contractions all day were about 2-3 minutes apart, 60-90 seconds and were hard work.  Matt and my mom were taking turns massaging my back...don't know how I would have done it without them! We sent my mom home around 10pm so she could get some rest, so it was up to Matt now!  We were both laying on the floor of our room, and I'd hit Matt right when another contraction would start, he'd hit his timer, then massage my back, as soon as it was over we both crashed down and tried to rest. Middle of the night/early morning it got intense, but I kept telling Matt, no I'm not ready to go back to the hospital.  Finally around 5am Matt called my Mom, he was fading and needed some rest.  Hey I want some rest too!!!  Well my mom traded off with Matt at about 6am and all the sudden my contractions pretty much stopped.  At this point I had been in labor for almost 48 hours..with no sleep!  Finally I got to sleep 15-20 minutes at a time, phew!  We called into one of the nurses at the hospital who knew we wanted to go natural and she said this was my body telling me to rest, it was the calm before the storm.  And that is exactly what it was.

The 24 hour mark was coming up and I need to be back at the hospital at 10am to get the stress test done.  So we jump in the car and head out... I for sure thought we would be coming back home after the test.  The car ride was uneventful, had maybe 2 contractions (30 minute drive) and was able to sleep some.  We get to the hospital and as soon as I lay on the bed, my water broke!  God's timing is perfect!  They checked baby and she was fine, then they checked me, and in 24 hours I had gone from 4cm to 5cm... shoot me! Well within the next 15-20 minutes I went from 5cm to 8cm!  Whoa whoa!  I thought before was intense, that was a walk in the park compared to transition.  I kept repeating in my head...it's almost over, this is the fast part... well that's what we were told at least!  But I guess in comparison to my entire labor.. the next 5 hours were "fast".

I cannot even describe the pain I was in.  I was kicking, I was pounding on the bed, pounding the monitor cart into the wall over and over.  Here's a bit of advice, don't look at the clock when you're in this stage because it will seem like it never moves!  My contractions were right on top of each other with no breaks...this lasted for about 4/5 hours.  The nurse said I was going tribal... is that a compliment?? lol.  I was stuck at a 9cm for about 3 hours and I just couldn't even take it anymore, I could barely catch my breath!  I told them to give me something to just take the edge off, so they quickly got someone in there and gave me a shot of something, i don't even remember what it was, but it was something they put in via my hand IV, and the next thing I know I'm laying on the bed trying to calm my body down.  I knew this drug was going to fade fast, so my nurse had me push myself to a 10, and said it's time to start pushing!  At this point she said she was going to call the Dr, even though it was early.  So 10 minutes later the Dr. walks in.

I love my OB, Dr. Kendrick, shes so down to earth and totally was on board with our birth plan (Thanks Auntie for recommending her!).  She was cheering me on as soon as she walked in the door.  In the birth plan I had requested she take measures to decrease chances of tearing..women you know what this means...so she grabbed a glove and had one hand ready to go.  I was mid contraction and mid-push (at this point it was Matt, my mom and Dr. Kendrick in there with me, nothing had been prepped for baby's arrival yet) and the next thing I hear is Dr. K say "oh my gosh, this baby is coming now, Matt call the nurse, push the button push the button!"  Before she could finish her sentence Abby popped right out (this was about 20-30 minutes from the time I was given the shot!).  I felt no crowning, no ring of fire, nothing, just pressure and bam she's out! Oh my goodness gracious!!!

We were so overwhelmed, exhausted, and drained that we were all kind of in a state of shock when she came out, but it was love at first sight!  Matt looked like he was in a daze!  Yup it was for reals, this baby just came out of me! Cray cray!  And that's our story... we love this baby girl so much!!!

I love this picture above.  I love the look on our nurse, Francie's, face - she stayed over time just to help me since she was all about women going natural, and she missed it!  She literally said "she just started pushing, I walk out for a minute and she had the baby!?"  I did feel bad for her, but oh well nothing I could do! You can also see that Dr Kendrick only had on one glove, she wasn't ready for baby to come out either! But this was kind of cool since when my mom had me, the doctor only had one glove on too!  But lets not talk about my moms labor which i was NOTHING like... she labored my brother from start to finish in 1 hr and 45 minutes and with me it was 4 hours... yea thanks for not sharing your genes on that one mom! >:(

Here are some more pics!

6 lbs 13 ounces, 21 inches

Love at first sight! Hi daddy!

Thanks Mom for helping me get through it, yes yes yes it was worth it! :)

The end!

New Feeding Products to Try

I mentioned in one of my earlier posts that I would be speaking with a SLP (speech language pathologist) who specializes in pediatric feeding issues/disorders who I was referred to by one of my distant family members who happened to see my blog! Praise God!  So I spoke with her on Friday and she is going to start giving us some techniques to try out!  In the mean time, I thought I would share some of the products she recommend we pick up.

1. DuoSpoon: The DuoSpoon is a creative oral motor tool for children with sensory challenges. It's actually two tools in one: both ends of the DuoSpoon provide sensory variation. The sensation bumps on one end provide a bridge to texture acceptance. Once the child likes mouthing this end, tastes of food can be introduced. The child can be offered a favorite puree from a spoon which has the texture built in! The "speed bump" end provides a gentle wake up as the upper lip moves across the spoon bowl, and helps increase upper lip activity in food removal. Different food textures can further vary the child's experience with this end of the spoon. The DuoSpoon is made of FDA approved food-grade, very flexible, yet sturdy, silicone.  I'll let you know what Abby thinks of these once I try them out!

2. Nuby No Spill Cup with Super Spout:  So I just picked up one of these cups from Target and by day two Abby was using it all by herself!  What's different with this cup?  Well you have to chew/bite down on the spout, then water comes out.  Abby loves biting down (instead of sucking, or eating off her spoons, etc), so this works perfect for her! And what I love even more is that it really doesn't spill!!! There are 4 stages of cups that you can buy to transition from stage to stage, we are starting out with stage one.

3. Food Chaining Book: The book just arrived today from Amazon, so I have yet to read it.  But if I understand correctly, food chaining is taking a food that a child already likes and feels safe/comfortable eating, and building on that.  So if they like strawberries, then start to chain similar foods into your meals and see what happens.  Again, I haven't read it, so I'm just taking a stab at what it is. But i'll be sure to update you once I get reading!  To be honest, I'm not so sure how this will work for Abby because she seems to take a few bites of just about anything, but its getting her to take those additional bites!

4. Maroon Spoons:  Maroon Spoons Sturdy plastic spoons have narrow, shallow bowls to allow food to slide off easily. These work well with children who need to be fed or are beginning self-feeding but have poor lip closure, oral hypersensitivity, or tongue thrust. Especially useful for assessment or when starting on solid food, since the amount of food can easily be limited.  I'll let you know how they work out!

That's it for now. All of this stuff (minus the Nuby cup which I'm already using) just arrived today from Amazon, so I'll try it out tonight!  I guess I should start reading this Food Chaining book now!

Buh bye!

Abby vs Food - Video Post

Many of you may wonder what exactly it's like to feed Abby on a daily basis.  Below are a few videos of what she does.  Meal times are fairly quick now-a-days (I used to be trying to feed her for hours while she refused and cried), but now, as soon as she starts fussing or signs "all done" to me, I stop.  I don't want to force her and I don't want her to have any more negativity/fear towards food than she already does.

Things that I have tried to feed her are yogurt, eggs, pasta, cooked veggies, fries, mashed meat, rice, beans, fruits (she seems to like fruits!), cheese, whipped cream, bread & butter, baby food (she refuses them all now!), vanilla wafers (she seems to like these!), smoothies, avocado, ice cream... etc etc - yes not all of those are things that you would ever WANT to feed a baby - but like I said before, in an attempt to get maximum calories into her, we've tried it all!  Abby will usually take a few bites of what we offer her, then she refuses.  Every blue moon she will eat good... this confuses the heck out of me!

Okay, video #1 is some egg cooked in butter with a little Similac Neosure (this is a high calorie formula that is usually used for premies) and breastmilk whisked in.



This is Abby's MO 90% off the time - take a few bites, then either start to refuse it, or spit it out.  The other 5% of the time she completely refuses even 1 bite, and the last 5% of the time, she will actually eat up to a few tablespoons (happy dance!).

Video #2 is Abby eating Strawberry Greek Yogurt - I can usually get her to take a few bites of yogurt (like mentioned above), and then she pushes me/spoon away.  We have tried having Abby feed herself with the spoon, but she'd much rather gnaw on the utensil than eat what we put on it - but we still try this every day!  We've also let Abby just play with food, hoping that without us stressing much on her eating it, she might become curious and put it in her mouth.  The few times we've done this, she has fun playing with it, but none usually makes it into her mouth.  It's okay though, we are going to try incorporating playing with more food as part of her therapy.  Food is fun! Food is safe!




And there you have it.  This is what it's like 3 times a day, everyday.

I have three nieces, all of whom love food - so I knew this was NOT normal.  Can't wait to learn some new techniques and share them with you!

Bye!

"She'll grow out of it"

I can't tell you how many times I've heard people say to me, "don't worry, she'll grow out of it" - though I know how well meaning they are trying to be, it makes my skin crawl.

First of all, I've been hearing this from the beginning of Abby's feeding problems, and it's 8+ months later and she still hasn't "grown" out of it, nor has it improved.  Nor do I believe that it is something she will "grow" out of (though, Lord if this is your will I will NOT complain ;) ), I believe it is something that has to be taught to her. And that is my responsibility - to teach my child how to eat food, enjoy food and know that food is good for you.

Second - when someone says that to me, whether it's meant to make me feel this way or not, it makes me feel like the here and the now don't matter.  Almost, like a pat on the back "it'll get better". But the reality is that I am living it day in and day out and I HAVE to address that there is a problem and try to help her out NOW - not wait until she outgrows it or it miraculously disappears.  (Again, Lord if that is your will, I will not complain!!) :)

Here are a couple of eating myths that I read on the SOS Approach website that I thought might put a few things into perspective for well-meaing persons who simply don't get it (it's not their faults, this is just a foreign concept to everyone who has never had to experience it).  

Myth - Eating is Instinctive

Eating is only an instinctive drive for the first month of life.  From birth to 3-4 months of age, we have a set of primitive motor reflexes (e.g. rooting, sucking, swallowing) which help us eat while we lay down pathways in the brain for voluntary motor control over eating.  Between the end of the 5th or 6th months of life, these primitive motor reflexes "drop out" and eating is essentially a learned motor behavior after 6 months of age.  [In Abby's case, those primitive motor reflexes weren't even instinctive for her.  She did not have the rooting or sucking reflex.]

Myth - Eating is Easy

Eating is the MOST complex physical task that human beings engage in.  It is the ONLY human task which requires every one of your organ systems, and requires that all of those systems work correctly.  In addition, EVERY muscle in the body is involved (one swallow for example, takes 26 muscles and 6 cranial nerves to coordinate).  Plus, eating is the ONLY task children do which requires simultaneous coordination of all 8 of our sensory systems.  Learning, development, nutrition and the environment also have to be integrated in to make sure a child eats correctly.

Myth - If a child is hungry enough, he/she will eat.  They will not starve themselves.

This is true for about 94-96% of the pediatric population.  For the other 4-6% of the pediatric population who have feeding problems, they will "starve" themselves (usually inadvertently however).  For the majority of children with feeding difficulties, eating doesn't work and/or it hurts, and NO amount of hunger is going to overcome that fact.  Children are organized simply; if it hurts, don't do it.  If it doesn't work; cry and/or run away.  Also for the children who have skill or medical problems with eating, their appetite often becomes suppressed over time, such that they no longer respond correctly to appetite as a cue to eat a sufficient number of calories.  [Abby is one of those babies who would starve herself and be perfectly happy doing so.  I have heard this myth from so many people, even those near and dear to me.  I would have been one of those to say that as well, but now I know better!]

And now you know.  The end. 

<3

Information, where are you!?

As the struggle to get Abby to eat has continued, like any mom would do, I've been googling and looking up information pretty much on a daily basis.  I have become so very frustrated at the lack of information out there for our specific situation.

There seems to be many websites out there that talk about the child who does not want to eat, but most of them are aimed at children who are on the spectrum (which is a great resource for them!), or who have severe medical conditions.  But what about the child who appears to be completely normal, but still refuses to eat??

I was checking out a website called feedingmatters.org yesterday and I really liked some of the information they had...however, no where did they have things that I can start trying right now to help Abby eat (or maybe I couldn't find it?!).  This seems to be the case with a lot of sites... here's lots of information on babies who don't eat, here are some case studies, here are some statistics... but uhh, where is the good stuff - like what to do!?  Most just say talk to your pediatrician (done that), get an OT (done that), see a GI (done that), now get them all to work together... and how exactly do I do that?!

Here is a good stat that I read on the feedingmatters website.

On a good note. It seems that I've made a really awesome connection by starting this blog.  I will be hopefully speaking with a SLP (speech language pathologist) who specializes in pediatric feeding issues later today!  Hoping to get some information on what I can do TODAY (ok, maybe tomorrow) that may start helping Abby eat better!  I'll be sure to keep you posted!

Mama Bear Out!

I know your tricks, Mom!

Babies are smart. They may babble and oo and aa like they have no idea what's going on, but believe you me they know!! :) To give you an idea of all the ways we've tried to get this baby girl to eat/drink, here is almost all of the utensils/contraptions we have tried.

 

Yup, we've tried a syringe, a straw, different special needs utensils, you name it!  This girl seems to like to eat from a straw (she can't suck yet, so I've got to do the whole dip and suction it thing) but this only works sometimes, and I'd really not like to get her used to eating full meals from a straw!!

But back to the smart baby thing... Abby loves water.  And yes, I know the doctors say not to give it to her, but tell me why not I had to try.  So you may think, well if she likes water, just swap it out with breastmilk, or juice, right? Wrong, you switch it out, she smells it from a mile away and will swat it away from her face! Little booger!!!

With the little bit of food we are able to get into her, we've got it down to a science of what we do to those little bites - we are going to make them the highest calories we can!  This gets frustrating because I will make her a yummy smoothie for example, filled with probiotics, duocal, neosure and some breastmilk, then she takes one sip, or better yet she refuses all together - UGH there goes all those calories down the drain :( - not to mention my hard pumped milk....

Above is some of the additives we try to sneak into her food.  Don't judge me.  Butter, oil, shoot I would fill her cup with chocolate chip cookies and french fries if I could get her to eat it!  All the things I NEVER imagined giving my child - welp, out of desperation to get some meat on those bones and calories into her - it's what we've got to do.  Our OT suggested trying Cheese Whiz...okay I won't go that far, not going to give her something I won't even put in my mouth! Where is this OT from you might ask... Stanford... riiiiight, okay I'll let you think what you want about that one ;). 

Okay, that's all for now.  Just wanted to share with you some of our tricks with food utensils and additives... which may or may not work, given the day, her mood, the color of the sky, you know...

Adios!

When you're hungry, you eat. Right?

I have decided to start documenting our struggle to get our baby girl to eat so that maybe one day it can help out someone who finds themselves in our situation. Let me give you a little history first...

Abby was born in June 2012 as a healthy full-term 6 lbs 13 oz baby girl. We were so excited to welcome her into the world, the past 9 months 10 months of anticipation included everything from wondering who she would look like, if she would sleep for us, how we'd raise her up, etc etc, not ever did we think "what on earth will we do if my baby won't eat!?"

Her feeding struggles did not start right away. Actually we were so excited because she was the perfect baby, she was eating great, and sleeping all night pretty much from day one. Then at about 6 weeks old, everything changed. Abby began refusing the breast and breast milk via bottle by screaming her little heart out, turning her head, arching her neck and kicking and swatting like crazy. What in the world!? So as any mama would do I started to go down the list of what could be bothering her. I quickly took everything I could think of that would be bothering her out of my diet (dairy, soy, veggies, beans, garlic, onions, spicy, etc etc etc) but still, 6 weeks later my days were still filled with a very very unhappy baby and a stressed out overwhelmed mama. On top of the elimination diet, I tried different nursing positions, different bottles, you name it (these were things the pedi also recommended we try!) The only time I could get her to nurse was either when she was extremely sleepy or in her sleep (there goes my plan to not nurse to sleep!!).

Finally, after exhausting all our options of trying to figure this out on our own and having a baby who was gaining very little weight, I started taking videos of her attempting to nurse and sent them to my pedi. Right away she said it looked like silent reflux (acid reflux without all the spit up). So, at about 4 months old, we started her on Zantac. We didn't see too much of a difference, but okay in our heads we thought, maybe it's helping a little. Right about this time Abby's night sleep went down the tank. I guess I should also mention that she was one of those babies that would only nap when being held. I had told myself that I would not be one of those moms...well when you're little helpless baby is in pain, you will do just about anything.

The first month of being on Zantac, Abby still was barely gaining weight, she gained maybe 3 oz's that month at most. We requested to see a GI (gastroenterologist) at this point since we were still struggling with her feeds. I should mention that she also completely refused a bottle since 6 weeks old, breastfeeding to sleep was her only way of eating. Around 5 months old the GI suggested we start solids, maybe she will take to solids better. Initially she would eat great, but we saw her interest and desire to eat begin to decline. And she continued to only gain 0-3 ounces per month. She had fallen completely off the charts and we were told that she is Failure to Thrive. What? Our baby girl is failing to thrive...huh!?

Over the next few months we had a number of tests done.. an upper GI, endoscopy, abdominal ultrasound, EEG, EKG, Echo, Head Ultrasound, blood tests, stool tests.. you name it! All was coming back mostly normal. She was anemic, but this was due to her lack of eating. We also learned that she has delayed gastric emptying which was really tough to diagnose since she was not a big vomiter. But since we started pushing solids, we noticed that when she would eat a good amount, that night she would be throwing up and throwing up. Around 8 months old we started giving her erythromycin to help her stomach empty faster and her throwing up seems to have stopped.

We have also taken her to Nuerologists, Cardiologists, Occupational Therapists, Dieticians, etc - we have gotten no where. We thought maybe Sensory Processing Disorder, but the OT ruled that out. The OT at Stanford that we were seeing actually wrote us off saying, good luck, babies who have no desire to eat are the hardest! She suggested shoveling food into her mouth as quickly as possible, giving her high fat foods, etc - but thats all well and good IF we could get her to open her mouth!! Abby's MO has been almost complete food refusal - she turns her head, gets tight lipped (so tight I can't even pry it open!), pushes us and her food away, spits food out and starts fussing and crying. We can usually get a bite or two in, but after that, forget it!

Abby is now 10.5 months old and only weighs 14lbs 9ozs - her pattern of gaining 0-3 ounces continued until just this past month when we started to see her lose weight. NO NO NO!

We have been praying that the Lord would completely heal her from this and we will continue to do so! A special thank you to all our family and friends who have prayed along side us!! As this has continued to go on, we have gotten to the point where the doctors have said if we don't see significant weight gain in the next few weeks, more drastic measures will need to be taken. Our GI suggested we look into the Los Altos Feeding Clinic, a world-renowned Feeding Therapy Clinic, and its right here 30 minutes away! The bad news is that they do not take insurance, however we are currently trying to find out if we can get reimbursement from our insurance company. The cost will likely be in the $10,000-$20,000+ range! Abby will be going in for an evaluation next week or the following.

The good news is that other than the food refusal, Abby is developing great - she engages with us, she waves and claps, crawls and cruises and loves to dance. Though we struggle on a daily basis, we know that God has a greater purpose for this all and we look forward to seeing his plan for Abby's life!

More to come as we continue on our journey!