Clinic 4 Kidz: Day 5

Today was our last day with Allyne for this month, she will be back August 6-8 for another 3 days of treatment!  This week went by fast, but slow at the same time, it left me exhausted, physically and mentally but seeing how much progress we've made so far makes it all worth it and I'm excited for her to come back in August!  Matt said she really is like an angel God sent to us!  :)

Matt did today's breakfast and morning milk session on his own today and did a great job!  After talking to Matt on how he felt with everything he commented how the whole process seems so overly simple but then when you go to do it there is much more to it.  We are both just so excited (and relieved) that Abby has been responding so well.  Allyne warned us that now that she will not be with us through the day Abby may try to pull her old tricks on us but we have to stick to the protocol.  I actually noticed this last night when I was doing Abby's milk session - she was trying all sorts of different things to get me to stop and give up (let all the milk spill out, stuck her tongue out and wouldn't close her mouth, sealed her mouth shut, turned from side to side, ripped her bib off, etc) and to get control back, but I just stuck with it - ignored what she was doing and proceeded on.  That is another thing that we have learned this week - to not address or even say anything when Abby pulls her tricks out or starts to fight us but just keep pushing forward like nothing.

With Abby's milk feeds we notice that after about 5-6 minutes Abby gets pretty antsy and irritable, so the new protocol is that once we see her start to do this, we then pour the rest of the 1ounce that she hasn't finished into a little cup and syringe feed her the rest.  This is not something I'd like to be doing, but we don't really have an option, she needs those calories.  I took two small videos of the milk feed, one is here, and the other with the syringe is here.

My mom came around 11 and was trained to feed Abby - she went through the whole being feed and her feeding Allyne approach and though it seems silly, it really is very helpful.  Here is some words from my mom (Mama Brown)..."In preparation for my training today I read the blog, took notes and watched the videos over and over.  Today Allyne went over the techniques using herself and I as examples, I'm glad i had my notes  because it helped to refer to them and I was able to add additional notes.  Then it was my turn to feed Abby, Nico was right, it's a little bit harder when you are actually trying to feed Abby.  So much to remember. In the past, I loved to play around and be silly with Abby when i fed her but now this is serious business.  Even my tone of voice was important.  Over all I think I did ok for my first time.  Allyne thought it was a good idea for me to continue to do more feeding so I could become more comfortable, so I stayed to do the dinner feed.  Well wouldn't you know, a few hours later I had a brain fart and forgot a few of the techniques I had just learned.  You may have not noticed because Abby is doing so good but technique is important because we don't want Abby to go back to her old ways. As for her milk feeding it went well. This is a time when I could be a little silly and interact with Abby while she watchs a video.   So I will have to help with feeds at least a couple times a week so I can fill in when needed and not be intimidated."  Thanks mom, yes get the practice, we need a date night! :) 

In between feeding sessions and nap times Abby enjoys playing around the house, going for walks outside and today, I peeked in the living room and saw her dancing, so I got a quick video of it, she is too cute!!!! 

To give you a quick rundown of what Abbys eating looks like during the day, check out her schedule below.

Breakfast - 1.5 oz of puree with 1tsp heavy cream and 1/2 tsp saffola oil, finger foods to eat/play with (finger foods are on her terms so she can eat/taste or not eat/taste whatever she likes)

Morning Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

Lunch - 1.5 oz of yogurt with 1tsp heavy cream, finger foods

Afternoon Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

Dinner - 1.5 oz of puree with 1tsp heavy cream and 1/2 tsp saffola oil, finger food

Evening Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

To us this seems like so much more food than Abby is used to, but then I really look at the quantity and it is still so little compared to so many other babies I know at this age (or even younger!) - but it is progress and we hope in the coming months we can continue upping the quantity.  I mentioned in my previous blogs that we were going to weigh Abby today, and I did, but it is a little disappointing after she's been eating so much more.  She's up 2 ounces since Monday.  But after talking to Allyne she said we need to give it a few more days to really register on the scale since reaching her caloric goal just started on Wednesday.  So I'll keep you posted!

Tomorrow we do everything on our own, lets see how it goes!

Lets do this mom!!!

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

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!