Contending for Abby

Over the past few weeks our church has been speaking about contending for the miraculous.  We don't often put ourselves in the category of needing a miracle, as we often think miracles are only asked for when something is extremely wrong.  You know, like someone is deathly ill, or got in a bad accident...Am I making sense?  Maybe it's our human pride, or maybe we just never looked at Abby's eating this way, but in the past few days God has definitely been tugging on my heart and on Matt's heart to contend for a miracle for Abby.

We are so grateful that just a year ago the doctors were getting ready to put her on a feeding tube, and by God's hand, he provided therapy for Abby to be able to avoid it.  Abby is on the charts, Abby is gaining weight, Abby is a happy girl, Abby loves to laugh and play, and Abby is growing developmentally - for this we are grateful!  Our struggle has continued to be on getting her to eat foods other than pureed fruits and yogurt, to be able to chew, to be able to self-feed, and to be able to drink anything other than water on her own.  In the big picture of things, this may all sound like just some normal toddler struggles, and I get that it could be WAY worse, but it doesn't take away our reality of stressful, overwhelming days of therapy - therapy is every single day - because when the therapists leave, we have to take over and keep up with daily exercises and treatments.

In addition to therapy through the Clinic, Abby is now also being evaluated by an Occupational Therapist for sensory issues and what they think may be weak muscles in her mouth - which means we may be adding more days of outside therapy to our weekly schedule.  All of these recent findings, along with some other stuff, have really added to our stress levels and the longing, and hope of Abby to just be completely healed of her feeding disorder and issues.

Our eyes have been so focused on the problem that we have failed to set our eyes completely on God and trust Him to be the solution.  Sure we pray daily for Abby to progress and to enjoy eating, but I feel like it has just become a routine prayer not an all out cry out to God for her healing - and this is what we are doing now, and what we ask our brothers and sisters in Christ to join us in prayer for.  Contending for a supernatural healing for Abby.  With God all things are possible, and I know that sometimes struggle is a part of the journey, but we cannot be afraid or timid in making our requests known to God.

"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there," and it will move.  Nothing is impossible for you."  - Matthew 17:20

"Do not be anxious about anything, but in every situation, by PRAYER and PETITION, WITH THANKSGIVING, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6-7

Chewing? What's that?

Once again, months have passed and I have not had a blog update.  Honestly, the reason I have found it so difficult to post is because initially I had started this blog in hopes of helping other parents who found themselves in our situation, but as we have gone through treatment, I just can't even put into words what we are doing that is helping her - and on top of that, every child is different - what works for us may not work for your child, and may actually make things worse.  So I have been very very hesitant to post tips and techniques, because there is so much minute details that go into feeding therapy that I could never "rewrite" it onto paper.  So, from here on out, I will just post updates on how Abby is doing, and maybe some other fun stuff :).  If you are a parent looking for help, please please find a feeding therapist/clinic ASAP! The roadblocks we are experiencing now may have been prevented if we sought treatment when she was just 4/6 months old instead of 12 months old!

So, where are we at today?  Well, Abby had been doing pretty good - however in the last month or so we began to notice that feeds were/are taking double the time, she was/is spitting out a lot of the finger foods, she was/is gagging/coughing a lot more and just being a bit more (a lot more) defiant.  Well…I finally put my finger on it after watching every bit of food go into her mouth, stay in there for a long time, then either get spit back out (in the same shape it went in), or was swallowed whole - this girl does not chew.  The closest she gets to chewing is a gnawing like motion of "chewing" yet her teeth never fully bite down together to masticate/grind the food to where it is ready to be swallowed.

I quickly brought this to the attention of our therapist, sent her some videos, and she got the Clinic's speech pathologist involved - and yes indeed we have a pretty significant problem on our hands.  It looks like Abby has some sensory issues with chewing, maybe even anxiety - when she gets a textured food, she waits for it to either dissolve in her mouth, swallows it whole, or it gets stuck on her tongue and she freaks out and starts gagging, coughing and trying to spit it out (imagine taking a bite of a gold fish, pieces may crumble in your mouth, others stay large - you know that by not chewing it up it's going to hurt swallowing that whole, so your protective instincts pop in and say get that out of my mouth - this is what's happening).

When Abby eats her puree's/yogurts she is perfectly happy and content - she does not have to think, she does not have to do anything, just opens her mouth, and swallows. Up until the past month we have manipulated her food to present to her in a way that would be "easy" for her to command in her mouth - we'd mush it, make it into tiny pieces, or we'd give her foods that were already like this (refried beans, large soft steak potato fries etc) - but now we've got to address this before moving forward.  I mean, think about it, chewing is one of the foundations of eating.

We are still working on coming up with a protocol that can address this issue - the therapist is here today, and back next week - in the meantime she will teach me some things and I will have to do these exercises with abby 2-3 times a day. And I know it's not going to be pretty.  The exercises mainly consist of putting a crunchy food (cheeto, veggie sticks, gold fish, crackers) on abby's back molars and requiring her to bite down, 3-4 times, making the "crunching" sound, (we will do the same thing so she see's us chewing/crunching), then say chew chew or chomp chomp and show her what it should look like (yay i get to show someone my chewed up food and it not be offensive! haha jk!) - we even have a mirror for her to look at her mouth to see what she is doing and how it looks in her mouth.  She needs to learn what her teeth can do!  This may sound like an easy exercise, but it's not when she does not like having to bite down and chew in the first place - so I will be taking a lot of deep breaths this week and praying that she catches on fast!

Here is a quick video of what her chewing exercises will look like.

Some may wonder why we didn't catch this sooner - and it's a good question.  Abby is currently eating at the level of a 8/9 month old baby (she will be 2 in 4 weeks!) - so we expected some delays.  Her back molars did not come in until a few months ago, so up until then when she was "gnawing" and "munching" we thought it was normal because there were no teeth back there for her to "chew" with.  But now all the dots have lined up and it's pretty clear that there is an issue now.

Your continued prayers for Abby are so appreciated - and for mommy too, well because feeding a child who doesn't want to eat 6 times a day, 7 days a week can be… exhausting, overwhelming, stressful, etc etc - but we are SO encouraged by the progress she has made _ i mean she's been on the charts for almost 3 months now! :D And we are SO blessed to be a part of Clinic 4 Kidz - how I wish services like these were offered all over the world - because it is therapy like this that makes a difference!

Until next time….

Abby's Update - Better Late than Never!

I just logged into my blog and realized I hadn't logged in since August - eeek! Sorry everyone for the lack of updates! So many days I have written it on my to do list and I just have not gotten to it.  So much has happened with Abby's progress, lots of ups and downs, regressions, triumphs etc.  I will try to give as much of an update as I can!

To start off with great news, Abby is now 19 lbs 5.5ozs and I'm pretty sure she is almost 30 inches!! We just ordered a new car seat - so thats a good sign :)

In the past few months we have continued to struggle with  getting Abby to eat savory foods, drink anything other than water out of a drinking container, and her volume intolerance.  For a while there Abby was testing us big time, she wouldn't open her mouth to accept the food, if she did accept it she would spit it out or start gagging, but finally after I'd say 4-6 weeks we aren't dealing with that anymore! She is still however coughing/gagging/choking her food once or several times during a feed - we simply ignore it, make sure she's not actually choking by watching her cues, then we continue on as if nothing happened.  I'm still at a loss as to why she continues to do this, even with us completely ignoring it, she gains nothing by doing yet, yet she still does it. hmmm...

We have slowly increased Abby's food intake, both with her Carnation Instant Breakfast milk and with her solid foods - while I have backed up on breast feeding, now only doing it twice a day, and throughout the night (insert long sign and banging head on the desk).  We literally increased one item at a time by 1/4 of an ounce for 3-5 days, then would increase another meal by 1/4 ounce - and now we are at 2 ounces of puree'd food 3 times a day, and 1.5 ounces of CIB milk 3 times a day.  This still doesn't seem like much at all compared to other kids her age, but it's what her body needs and is thriving off of - she has been consistently gaining about 1 pound per month - this is AWESOME!  Since I have backed off of the breastfeeding, it's a little tricky to make sure she is still hydrated since she cannot tolerate much additional volume - so we keep it slow and steady and offer her a sip here and there of water throughout the day. Wet diapers have been normal, so hooray!

In the past we were distracting Abby with a plethora of toys throughout the meal, but we have somehow moved on from that (yay!) and now she gets to watch a movie while she eats - currently she only wants to watch Nemo... over and over and over..just keep swimming! LOL  She is actually eating her finger foods great - we start each meal with finger foods now instead of ending it with them, as we saw that she wasn't interested in them after she became full from her puree- but now she eats a good amount of finger foods and then all her puree so it's a lot more calories!  Here is a picture of her from today of her eating spanish rice and kiwi! I think she does best with a savory food when it is in a finger food form - such as rice, lunch meat, cheese, etc - but once we puree something or give her a savory soup shes not such a happy camper.

We continue to have Allyne at our home 3 times a month, and we've been approved by our insurance for 18 more visits - Praise God!! We are so glad that we decided to go with Clinic 4 Kidz - the way that their system works is just what we needed! Even though they are only physically here 3 times a month (and all day long from Breakfast through dinner!), Allyne is available any time via text, phone, email etc - so it's really been great for us and she has helped us through a lot so far!

Here are some more pictures where you can see how good Abby is looking - she has a little belly and some cheeks now :)  Thank you all for following our journey and your continued prayers!

We hope to get Abby to drink milk on her own one day soon - lots of work ahead!

Mama Bear

2 Pounds, 2 Inches!

Hey Everyone!

We are still alive over here! Sorry I haven't posted an update in weeks!  We are in the middle of moving and remodeling some of our new home so things have been hectic to say the least!  But I made it a point to post today as Abby is officially 14 months old today and are you ready for her stats!? She is 17 lbs 13 ounces, 28 inches... which means, she has GAINED over 2 pounds in 2 months and has grown 2 inches!!!  Isn't it amazing how food really affects the body so much and so quickly!

Abby overall is doing great, she's growing into a feisty little one and definitely knows what she wants!  We love her laughs, giggles, kisses and yes chubby squishy legs and arms and cheeks are coming in!!!! :D

Allyne came to work with us again August 6-8 and we were able to up Abby's daily purees to 1 and 3/4 oz which is a 1/4 oz increase.  It's not much but with Abby's volume intolerance we have to go extremely slow or that food will just be thrown right back out, and I HATE when that happens, I feel so helpless :(.  Allyne would also like Abby to begin to have more savory "tastes" during the day, so we are to give her 3 savory bites before each meal (like chicken noodle soup broth, or refried  beans, etc etc) - to be honest (Allyne I hope you don't read this! haha jk) this has been a bit touch and go on consistency because we have barely been home and it's been really difficult to implement this into each meal, I need to do better!

With the current types of foods Abby is eating (fruit purees), she is at about a 6 month old's level eating wise, so our goal is to get more savory foods/veggies in, and then slowly add in meats!  Meats will be a tough one as they are harder and longer to digest so that may be a factor in that small tummy of hers.  We'll see!

Pretty much a few days after Allyne left this month, Abby started to regress in some of her eating behaviors - she has been twisting her tongue so that the spoon and food ends up under her tongue, or expelling (spitting it out), gagging a lot and just being a lot more difficult to feed/distract!  So Allyne is having us make sure her purees are nice and thin and that we make sure to not offer her the bite until her tongue is in a frontal flat position to accept it.  She is getting better but she still is gagging once or twice per meal, I don't know why??? But besides that, we are really happy and thankful for all the progress Abby has made!!

Hopefully I can post another update within a month, but don't be mad if I don't, theres so much to do with the new house, and work, and oh take care of a little bambina who likes to pull on mommys leg all day, then when mommy gives her attention she runs away and plays! hahaha love her to pieces!

Her new swing at the new house!

Mama Bear

When Empty, All Done!

Today we were all on our own with Abby's feeds and the day went pretty good!  Today is our nieces 5th birthday (Happy Birthday Ari!!) so we were out at her birthday party most of the day so I had to prep all Abby's food (and milk) ahead of time.  I'm really hoping that in a week or two making her food and all the measuring I have to do will become much quicker, as today I spent a good hour in the morning making her lunch, measuring out all the additives, packing finger foods, measuring out her milk and packing up toys, etc etc.

Abbys solid feeds are getting so much easier and quicker, it's really amazing for us to see how well Abby has progressed in such a short time!  I think she is beginning to understand the "when empty, all done!" concept!  I've been texting back and forth with Allyne today and she thinks that if Abby keeps doing so well we'll be able to up her solid puree intake to 1 and 3/4s ounce soon!  :) The harder parts of the day are her milk feeds...this little girl just does not want to work with us much on this one! Hopefully as we continue to just keep on with the protocol, Abby will start to cooperate more as she will see that everyday, 3x's a day her milk is going to come, we're not backing down!

Here's a pic of today's happenings....

Abby loved watermelon! My notes of everything Abby ate, grand total of 593 calories today!

So far so good!  Praying Abby continues to progress and that her little tummy starts to stretch to hold more volume.  We've noticed that her tummy protrudes and gets pretty hard even after just 1 ounce of food or milk, so we have to keep an eye on that.  Allyne says we may have to keep her quantity low but give it to her more times a day... we'll see!  

That's all for now! Good night!

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!!!

Clinic 4 Kidz: Day 2

Today was day 2 of Allyne being with us from Clinic 4 Kidz.  Our goals today were to get Abby to eat 1oz of puree with 1tsp of heavy cream and 1/4tsp of saffola oil mixed in for every solid feed, and for her milk feeds to get her to drink 1oz each session.  Yesterday I mentioned her minimum caloric goal is 560 calories per day, today we reached 556, pretty darn close!

For breakfast Allyne pureed up a mango/peach puree with whole milk and the additives mentioned above.  Abby ate 1oz with pretty much no fuss, which is great!  She is working on getting Abby's wide mouth acceptance fixed and it does seem like Abby is understanding that when she says "big ahh" that means she needs to open up wide.  The other issue we are having is that many times even though we get her to open wide, her lips shut so prematurely that we have to be lightening fast getting the spoon into her mouth or else she only gets a tiny bit of food off the spoon.  Allyne is trying to teach Abby that if she does not open her mouth wide and keep it open for the bite that the spoon will remain stuck in her mouth until she opens up again to finish the bite (you will see some of this in the second video below).  For each solid feed we first want to get the calories in with the puree, then we open it up for finger foods and allow abby to enjoy herself and eat what/how she wants (to an extent of course!).  Today Abby tried plum for the first time and seemed to enjoy it!  The other finger foods were Sara Lee's soft and smooth whole wheat bread, which she nibbled a bit at, and a strawberry (seems to be one of her favorites).  Check out the video below of Abby enjoying her plum!

An hour after breakfast we do milk time.  The milk is mixed with carnation instant breakfast vanilla powder.  It is presented to her in a squeeze bottle since she will not suck it on her own yet (again, she will only suck water!).  We gave her 10 minutes along with continuous songs of gigglebellies playing on the iPad and she got 1/2 an ounce down.  She did spit some out, block the straw with her tongue and show other refusal behaviors but Allyne just kept on going!

For lunch we made a pear puree with the additives and Abby also seemed to enjoy this.  The finger foods for lunch were a cheese quiche, half a potato like tater tot, laughing cow cheese and a strawberry.  Abby put the quiche to her mouth, tasted it and spit it out, guess she didn't like it!  She did play with it and taste it a few more times but kept spitting it out.  She seems to like the potato and eats little pieces of the cheese here and there, and of course she loves her strawberry, though she mostly gnaws on it.

Her next milk time was coming up and Allyne decide that regardless of the 10 minute time limit that we wanted to go with, she said lets just aim to get 1 ounce in and if it takes longer it takes longer, she needs those calories!  Every time Allyne presents the straw to Abby, if Abby does not voluntarily open her mouth Allyne says "drink" and Abby opens up, sometimes Allyne will have to wiggle the straw in as well.  Abby seemed to be understanding more that she needs to do what Allyne is requiring of her and she did not fight nearly as much as she did yesterday, and guess what, we got 1 oz  in in 8 minutes!  Hooray!!! For now Allyne wants to only give Abby 1 oz and slowly increase it over the next 2-4 weeks to 2 ozs as we want to slowly stretch Abby's stomach!  Abby also took 1 ounce at her last milk feed as well, awesome progress little girl!!

Dinner was a bit more of a challenge today as Allyne wanted to introduce a new food to Abby - vegetable pasta soup (pureed of course).  She first started with her 1 ounce of preferred food, which was yogurt with the additives in it, after she finished the one ounce, she wanted Abby to take 1/4 oz of the veggie puree.  See the video below for how that went... not so well with those veggies!!  Sorry for the quick text transitions, I was in a hurry to get this posted so I didn't fix the time lapses!

As you can see from the beginning, Abby still is not all smiles when she knows its time to eat, but we are working hard to use toys and music, things she likes to get her to relax and enjoy herself.  You can see that Abby is definitely doing better at opening her mouth big and wide, but we still need work on the premature lip closure and tongue thrusting. But she has had  great progress in just 2 days!!  The veggie soup did not go nearly as smoothly, but it was good to see how Allyne reacted and did not back down.  I'm soaking all of this in because she is only here 3 more days then I will be responsible for replicating exactly what she does!  And from here on out (until she is 100% better) anyone who feeds her MUST be trained by Allyne or Dr. Patel - we're on strict protocol here folks! :)

Here are some tips I learned from today:

- More word commands.  "When empty, you're all done" say this while showing the child the bowl/cup of food.  When they finish show them the empty container and say "Empty, all done!" and praise them.  

- When the child refuses or shows behaviors against eating, just completely ignore them.  Don't say "you're ok" or "just take a bite" or "you can do it" - you don't say anything but "open, ahh" or "big, ahh" and you keep the spoon at their mouth until they do so.  The point of not acknowledging the behavior is you want the child to learn that it doesn't phase you no matter what they do, they still need to do what is required of them.

- We do want to keep the atmosphere positive, so if the child shows signs of being anxious, or antsy, or just being over it, then nonchalantly empty some of the contents out of the bowl/cup and have them finish one last bite and then show them "empty, all done!" - that way they begin to associate that once it's empty they are all done.

Tomorrow Allyne will begin to train me on giving the milk to Abby and I will do the last milk feed by myself.  On Thursday she will begin to train me on feeding her!!

During the past few days Allyne and Dr. Patel have made new food lists of stuff that we needed to pick up at the grocery store, and it's been a bit hard for me to go since they are here 8am-7pm, then Abby's bath is at 7:30, so my mom has been a huge help in picking up all the items we needed! Thanks Mom!! Allyne was super excited that after giving us the list yesterday we already had everything she wanted - she says some parents aren't able to get what they need until the last day!  Nice to have a mom who is right around the corner from us and who works right next to whole foods and trader joes!!! :D (and who brings you a Starbucks with all the groceries...teheeee!)

That's all for now, until tomorrow!

Mama Bear

Clinic 4 Kidz: Day 1

Today was the first day of treatment for Abby with Clinic 4 Kidz!  Allyne was the therapist that was given Abby's case, so she along with Dr. Patel were at our home today, from 8am until 7pm!  Along with getting Abby to eat, Allyne also worked on building trust with Abby by playing with her throughout the day, coloring, dancing, playing peek a boo etc.  Dr. Patel was alongside Allyne today to help figure out the protocol and plan for the week, but after today Allyne is our main therapist.

Abby didn't have a very good night of sleep, so by 8am she was still sleeping, I woke her up at 8:10, as they want her to be on a 8am wake up schedule.  Well she was pretty cranky all morning because I woke her up, so we'll give her until 8:30 tomorrow! haha!  Allyne had me do a mini feed first just to see how I feed her and what Abby's reaction was.  She took 1/2 an ounce of yogurt with some saffola oil pretty easily, but she did note that Abby has very premature lip closure (meaning when offered the spoon, she closes her lips way before the spoon even reaches half way into her mouth), has tongue thrusting and also does not have wide mouth acceptance of the spoon.  This is all stuff that they have to work on first in order to be able to work on getting the volume/quantity of food up.

The schedule they want Abby to be on is 3 solid meals a day plus 3 milk/carnation instant breakfast liquids a day (3 ozs per drink).  The biggest hurdle today was getting Abby to drink the milk, she was pretty resistant pushing the bottle away, crying, turning her head, being tight lipped etc.  She only consumed 3/4s of an ounce of milk all day - they want her at a minimum of 9ozs a day so we have lots of work to do!  She also had similar behaviors with the solid foods but not as much, but the main thing that they are working on with her is that none of those behaviors are going to make the food/drink go away, it's still there and she has to eat/drink it.

Each meal is given a certain amount of time, so it's really their goal to get her to take as much as we can within that time period.  Below is a video of Abby during her dinner feed, as you can see she was not too happy, but they still wanted her to eat what she needed to eat, and Abby seems to be beginning to understand that this is what she HAS to do, no way around it!

Overall Abby did okay for her first day.  Each solid meal was only 1/2oz to 1 oz of food, so not too much, but we are hoping to up that amount shortly.  The goal is to get Abby to be eating a minimum of 560 calories a day (includes breast feeding), and she's currently around the high 300s to low 400s, so we need to get that up, and then in order to play catch up on her weight we will eventually want her caloric intake to be 715 calories per day!

Here are some techniques that were worked on today:

- Words commands are important.  Don't say "are you ready to eat?" it's not up to her, say "it's time to eat", or "its time for milk", when she finishes show her the bowl/cup is empty and say "empty, all done" and sign all done.

- Leave the spoon at her mouth until she opens her mouth big and wide and say "big ahh", if she opens big and then closes her lips prematurely you leave the spoon there in her mouth until she finishes opening up more to get the whole spoon into her mouth.

- Distractions for Abby are key, so for solids we play music and get her more toys (the toys we had boughten her she's tired/bored of, so they said lets just try household items like tupperware, spoons, etc).  For milk time we play the iPad with "super simple songs" or "gigglebellies" songs playing on youtube.

-  When drinking the milk we have to use a squeeze bottle as she will not suck it on her own (she only will suck if theres water in there!!), in order to get her to swallow what we squeeze in we have to use our hand under her chin to support/stabilize her to take the drink and not spit it out.

They said Abby definitely has resistance to eating and they seem to think that this all stems from her Silent Reflux which caused pain when eating and that has now been formed into a habit of being averted/fearful of food.  They are hoping that within 2-3 months we will see major improvements!

Dr. Patel left, with Allyne on the right.

And there you have it!  I'll keep you posted on how tomorrow goes as well!!

Thanks for all the support and prayers!

ME

Evaluation with Dr. Patel

Tonight Dr. Patel came to our house to do an evaluation of a feeding with Abby, and to talk with us about Abby's history.  From the moment she walked in the door we knew we were going to love her - she was very personable and friendly and Abby immediately took to her. This is a big thing because Abby doesn't have a great track record of being "friendly" with people haha, she usually clams up or just gets stone faced, but with Dr. Patel she was waving, smiling, laughing and really engaging with her.  If that's not a good sign I don't know what is!

We started off her feed with cut up pieces of avocado, which for the first piece Abby put in her mouth and started chewing, within a few seconds she spit it out.  I tried to offer her another piece and she turned her head and whined and was pushing my hand away.  On to the next food choice.  Pear & Squash puree, she wouldn't open her mouth, just kept whining. Then we gave her an empty jar of food to play with and got her distracted, then offered her another bite and she opened her mouth.  She did this for a few bites then would refuse again, and as always we tried to distract her with something else then she'd take a few more bites.  Once she refused it and no amount of distraction was going to get her to open her mouth again, we gave her one of her "favorites" - yogurt.  I first offered it to her and she didn't want it, then she stuck her tongue out just a smidge to get a little taste, realized it was a "safe" food and ate about 1/2 an ounce of it.

Dr. Patel was thrilled with Abby's oral motor skills, her mouth and tongue are working properly, though her chewing could be better, but that will take more practice as she begins to accept more chunky/textured foods down the road.  She agrees, the problem is simply she is not taking in enough food (better yet, calories), yes she's "eating" well but the quantity is not nearly what it should be.  From Dr. Patel's point of view she says that it looks like Abby has some fear over eating and seems to do better with foods that Abby has deemed "safe" (yogurt, water, vanilla wafers) but Abby is still limiting the amount of food she allows us to get into her.  What is that fear from?  Who knows, but the most logical thought is that the silent acid reflux has caused some major discomforts and she associated eating with pain, and that then created habits that have gotten her to where she is now.

As our treatment week won't begin until July 8th, Dr. Patel in the mean time has drafted up some tips for us to start working on with Abby.  She should be emailing them to us by tomorrow, but from what I can remember here are some things she says to start trying.  I hope if any moms (or dads) out there are dealing with what we are with Abby that these things will be things they can try as well - this is one of the purposes of this blog, that people who have babies with feeding problems can get more hands on tips and ideas of new things to try - I wish I had this information when I first began researching, so here it is now for you!

- Add Safflower oil to a preferred food - start with 1/4 tsp in 1/2 oz to 1 oz of a preferred food.  Safflower oil is high in calories yet has no taste so it will not alter the taste of the food. Do this at every feed.  If the child stomachs the addition of the oil fine, increase the amount of oil in increments of 1/4 tsp.

- Begin offering water (Abby's preferred safe beverage of choice) in the bear straw "cup" - we want to teach Abby how to drink from a straw and the bear cup gives us control of getting stuff out of the straw without her having to suck initially. (Thanks to my mama we already have this cup!)

- If Abby refuses a bite three times, switch to a new food.  If she refuses that three times, switch to offering her just water on the spoon, if she accepts do it a few times, then go back to adding food.

-  Add to our collection of "distraction" toys that are only offered to her when she eats.  We already have some, but will add a few more.  Eventually we will fade out the distractions but for now if it's going to help her eat, then use it!

- Keep meal times to a maximum of 20 minutes, even if she is still eating and 20 minutes is up, stop.  We want Abby to learn that there is a time to eat.

- Do not take her out of the high chair if 20 minutes is not yet up even if she is refusing or whining.  She has to learn that those actions will not result in her getting out of the high chair.  Use the toys or other things to distract her, even if she's not eating, make the time positive.

- Do not allow others to "try" and feed Abby by coming up and shoving food in her mouth or trying to get her to eat.  There is a method to the madness and Abby needs to learn when and how to eat, so stick to her feeds being with the parent and in a controlled atmosphere.

That's all I can remember for now.  These are things to just start working on with Abby, but once they come in for the week of treatment they will figure out what exactly is going to work for Abby and how to get her to take more calories in per feed.  We look forward to working with them and are trusting that the Lord has placed us in this program for a reason - hopefully to get ourselves a chunky monkey! :)

More to come in the days to come as we implement these things!

Adios!

Miracles DO Happen!

How do I even begin this post....  Okay let's just get it out from the start, then I'll give you more of the story.  Today, at 4:58 PM, I got a call from Clinic 4 Kidz - they received a faxed Letter of Agreement from Blue Shield stating that they would cover us at the In-Network level for the FULL billed amount!!! Oh em gee wow - GOD IS FAITHFUL.

"Trust in the Lord with ALL your heart and lean not on your own understanding, but in all your ways acknowledge HIM and HE will direct your path." - Proverbs 3:5-6

Happy Mama & Happy baby!!

**Rewind**

Yesterday, after we received the news that our request for coverage had been denied we were filled with all sorts of emotion.  To say we were deflated and bummed would be an understatement.  Last night I sent an email to all the contacts at Blue Shield that I had email addresses for (thanks to working for a small company we have easy access to local contacts at our insurance company).  I wrote a long email and pleaded with them to read the email in it's entirety as I did not feel as though they really understood what we were requesting of them. I knew it was a long shot to get coverage from the beginning of this process, I'm not going to lie, at times trusting in God has been hard, but deep down we knew that whatever happened would be God's will and He would provide.  Within 10 minutes of sending the email, one of the reps wrote me back and said that she would try to push for our case to get re-reviewed, instead of opening up an appeal since that would take 30-45 days, but couldn't guarantee anything.

Then today, I went to Stanford to try and get a letter stating that we've been through their feeding program, that it did not help and that they did not provide the same services as Clinic 4 Kidz. Well this was an extremely disappointing trip to Stanford, as the OT told us she could not (or would not?) write a letter but that we could request her notes from Medical Records.  So off to Medical Records I went, at least it wasn't too hard to get the records, but then I open them up and read her "notes" on the days that Abby saw her.  She had things in there like, there is nothing wrong, she drinks a bottle, mother is just concerned.... WHAT!???  Um wow - how I wish that were my child she was talking about, I mean come on, drinks a bottle!? I WISH!!! Yes I am a concerned mother, but there is 100% validity to my concern.  And if this wasn't a concern, then why is her doctor giving us the option of feeding clinic or feeding tube - there HAS to be a problem.  This just reaffirms that my feelings I had when we first saw this OT were right - we didn't feel like she paid attention or listened to us, she never even EVALUATED Abby, she just sat there and talked about how we should "just shovel food into her mouth, or maybe cheese whiz, or actually good luck I can't really help you."

Throughout the day I was back and forth on phone calls, emails and in my head, trying to figure out how we could just come up with the money to get Abby into the clinic as who knows how long it would take to hear from insurance, and at the end what if they still denied it.  We were even ready to sell our cars, jewelry, furniture, whatever it took.  I actually wrote an email to the Clinic asking them if they could let me know how much exactly we needed to be able to pay for the clinic ourselves as we were not willing to wait months to hear back from insurance, Abby needs this treatment NOW.

On the way home from Stanford I talked to a friend who is an insurance broker, and he was saying how this is going to be a really hard case to fight and it would probably be a long drawn out battle, and that in his time of working with insurance, he hasn't seen insurance agree to pay full amounts like we were requesting.

When I got home I checked my email before I even got out of the car and saw that the Clinic wrote me back.  For the first year of treatment the cost was at least $76,000. Think I was stressed before, well now I was about to just sit in the car and cry!  But then... I got the phone call - "You're never going to guess what just happened, we got the letter of agreement from Blue Shield for full coverage at the in network level for the entire billed amount." ARE YOU JOKING!?!??! A tear or two may have fallen, I think a bug flew in my eye or something.... He told me that this has never happens, for just 1 day after they deny it for them to turn around and give them the letter of agreement for exactly what we asked for.  I told him it's because GOD provided and He is faithful!

So we are doing the happy dance over here and praising and thanking God!  God says - "Why so downcast O my soul, put your hope in God!" Forgive us for doubting at times along the way Lord, you have proven time and time again that you LOVE us, that you will provide for us and to YOU be all the glory!

Feeding evaluation is tomorrow, can't wait to see how it goes!!!

Thank you thank you for ALL your prayers, we've needed them and will continue to need them as we begin treatment soon!

Blessings!

Happy Mama

Insurance Update : No Bueno

Earlier today I got an email from Clinic 4 Kidz stating that they talked to Blue Shield and they agreed to cover their services.  I jumped for joy, sent out texts letting our families and a few close friends know the news, I did a blog update with the news, and as soon as I posted the blog update on Facebook I got a call back from the Clinic... umm sorry but that coverage is not what we thought... NOOOO :(

So here's what's going on... BSC (Blue Shield), has said that they will only cover the clinic as an out of network provider and only at their agreed contracted rates.  What does this mean?  The out of network part basically means that we just pay more out of our pockets than an in network coverage would cost.. we don't really care about this part.. but the agreed contracted rates means that, say for instance the upcoming feeding evaluation that we are having on Thursday costs $1500, well BSC says, no we only agree to let you (the clinic), "charge" $200 for this service so thats all BSC will pay, so then the Clinic would then send us a bill directly for the remainder, which in this example would be $1300.  This is NOT okay.

When asked why BSC would not cover it fully at the in network level they said it is because Stanford offers the same services and Stanford is already in network with them.  Well BSC, I've already told you 5 times already that we've already BEEN to Stanford and no they DO NOT offer the same services, they told me themselves!!  So now I am trying to find someone at Stanford who can write me a letter stating that they don't offer the same services, and the services they do offer we've already tried them and it did not help Abby.  UGH this is so stinkin frustrating!!!!

So what now?  Now we have to file for an appeal which can take several months.... The clinic has told us that they will NOT start treatment until insurance agrees to cover their services, which now jeopardizes the July 8th week of when we were hoping to get treatment started.  The only other way around this is for us to come up with $35,000-$45,000 and pay for the clinic in cash.  Yea let me just pull that out of my back pocket! >:(

Today has been a roller coaster of a day and leaving us frustrated, sad, angry at blue shield for not listening to us and worried for Abby's sake... but I know God tells us not to worry, He loves us and cares for the birds of the air, how much more does He love and take care of US.  Be Still and know that He is God... repeat this over and over Nico, no ifs ands or buts.

Continued prayers appreciated as we begin this uphill battle with Blue Shield.

Sad Mama

Here's a picture of Abby to lighten the mood ;)

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!

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