One year later....

Wow um, I'm sorry guys - I just realized my last update on the blog was June of 2014!! How did that happen, I coulda sworn it was just a few months that had passed....  This is going to be one long post - so grab a drink, some popcorn, and maybe a pillow.

Let's Back it Up, Way Up

I honestly can't even remember what was happening one year ago with Abby... so I'll go back to what I can remember, which is around December 2014.  Abby was starting to do much better with her feeds, but she continued to have some gagging and would spit out her food here and there - but she was doing so well that we didn't need to do much therapy work with her.  We started to talk about weaning from the Feeding Clinic, but knew that with baby #2 coming in January we needed to wait just incase Abby happened to regress in her eating with the new addition.

Baby came, Abby did well, we gave it 3 months, and in the middle of March we graduated Abby from the program! YAY! We are really proud of all the hard work and progress Abby has made, and all the hours that the Clinic poured into her case.  We've made some life long friends along the way!

At around the same time we ended therapy, Abby's Gastroenterologist also suggested we should start to wean Abby off of her reflux medication (prevacid) which we were giving twice a day (15mg each) - so we went to one pill a day for a few weeks, then we went to none - whoo hooo!

Or so we thought.......

April 2015 - Abby's Spiral Downward

We completely stopped prevacid on March 13th, 2015.  On the night of March 13th, Abby broke out in hives all over her body - massive ones.  They lasted a few weeks - we took her in and the doctor just said "oh looks like she has seasonal allergies, put her on this med".  In my heart of hearts I did not believe that Abby all the sudden had seasonal allergies, so I never fulfilled the prescription.  Then, two weeks later, Abby started to not want to eat, she would not open her mouth, or if she did she would hold the food in her cheek and not chew or swallow.  3 ozs of food took 2 hours (no lie) to feed her....my husband and I were beside ourselves. What happened!? [On a side note, this blog isn't about baby #2.. yet.. but let me tell you that since she was 2 weeks old she started to present just like Abby as a baby - she too wanted NOTHING to do with eating! ARE YOU KIDDING ME!?!?!? So in the midst of going through everything with Abby, we were also struggling to keep our second child growing and thriving, but more about that on another post...maybe.]

Then Abby started to gag, a whole lot.  And then came the vomiting - she started to throw up some of her meals, some an hour after she had eaten it.  What in the world.  Then Abby's belly got huge, swollen and hard, and a rotten sulfur smell was reeking out of her nose and mouth.  Her eyes and nose were also running like a faucet. Our pediatrician couldn't see us, so we took her to a pediatric urgent care.  The doctor said, hmm sounds like a "reflux flare up", let's put her on Zofran to take away her nausea and start her back on her reflux med.  So that we did.  The first day on Zofran she started to eat more - but that was short lived.  Back came the vomiting, gagging, extremely unhappy cranky little girl.  She would start screaming for no reason.

We took her to a new Gastroenterologist as we moved out of the area we used to be in, and she said this was all due to Abby being extremely constipated.  Ok... so on to enemas and laxatives she goes - we do a clean out.  She gets a little better, again short lived.  Took her back and doctor said she needs another clean out - so another clean out we do.

Then one night, after a day of vomiting, not wanting to eat and just being in an all out awful mood...lots of crying..Abby started complaining that her back hurt...screaming and screaming holding her back. I took her to the ER and they said "she's fine, little kids just like to say things hurt when they don't really hurt" - they didn't run one test. Unhappy mama here.  I got into her GI doctor the next day, and she ran a slew of tests and also said she was backed up again. Poor baby.

All this constipation... which has been a chronic problem for Abby..had the doctor wondering if there was a deeper issue going on.  The GI did a reflex test on Abby and noticed she had low tone in her low extremities and not great muscle/tone in her "expelling unit" - so she said we needed to get an MRI done to see if Abby possibly had a tethered cord in her spine.  Since she would have to be put to sleep for the procedure we decided to do another endoscopy at the same time.  Both tests were performed in May and thankfully both came back pretty much normal!! Praise God!!!! They did note that her sphincter muscle was a bit loose, but other than that the MRI and Endoscopy came back clear.

Unfortunately the still not wanting to eat, the big belly, the watery eyes and runny nose continued, we went out on a whim and took Abby off of all dairy....3 days later, Abby was a new woman, everything got better! She even asked for food and said she was hungry, those were words we had never heard before.  From what we can gather, it seems like the Prevacid may have been masking the dairy allergy symptoms, and when we stopped the medicine, her body went haywire.  We were referred to an allergist, and got a whole panel of allergy testing done.  Testing wise, all the tests came back normal for allergies, but apparently the way that Abby's body responds to the known allergen, like dairy, isn't a response that shows up on tests - well that's no help!! We also finally came to a diagnosis on Abby's crazy allergic episodes to peas and lentils that started as an infant... she has FPIES (food protein induced enterocolitis syndrome).  This is a rare syndrome - read up on it if you're interested!

Unfortunately, these amazing steps forward after removing dairy started to come to another halt a few weeks later....

July - August 2015

Slowly Abby started taking longer and longer to eat...we'd get a bite in and it would just stay there and we could not get her to chew or swallow.  Each bite would take 5-10 minutes.  I would say maybe over the course of 6-8 weeks things just got worse and worse. I would show you a video of what was going on , but it is literally heart breaking and I am hesitant to make that video public. It was bad. On top of everything, Abby was losing weight.  At her peak she was 26 lbs... she is now down to 23 lbs at 3 years old, and she hasn't been able to gain anything since around March.  The doctors are concerned again. Sigh. She is back off of the charts...

We tried an appetite stimulant, Periactin for 3 weeks... it didn't work and gave Abby awful insomnia.  There is another medicine we can try, Megace, but it is a hormone therapy drug used for adults with breast cancer and AIDs.. and I just can't feel right giving that to my 3 year old daughter. So we continue to decline it.

Where we are now...

Things have gotten so bad that meals were taking up to 3 hours to finish one slice of pizza (sans the cheese!)... 1.5 hours to finish 1 scrambled egg... you get the point. It was not good.  And Lord forgive us, but we became extremely upset and this just made matters worse. We got back in contact with the clinic and let them know what was going on and they said we absolutely needed to stop what we were doing, change our attitudes, change everything if we wanted to get this fixed.  We knew something had to change but we were SO concerned about Abby getting her calories that we did whatever it took to make sure she ate....and we created a big problem.

Just this past week we met with the GI who was also in communication with the Clinic .... Dr. Jeiven is great if you are in the Tri-Valley area - she goes above and beyond... anyway, we met with her this Monday and were given the go ahead to take the drastic measures to change everything like Dr. Patel (Director of the Clinic) had suggested.  So we now set a timer and after 20 minutes, Abby is done, regardless of what she has or has not eaten.  We give no verbal prompts to take a bite, chew, or swallow.  We moved her to a new location to eat. We bought new plates. We bought stuff she can set the table with.  And we do whatever we can to make meal times happy times.  Today was our 3rd full day of these changes, and meals are so much less stressful...but she definitely only gets in a few bites each meal. I just don't understand how a child doesn't want to eat...  Dr. Jeiven will see her in a few weeks and if her weight really nose dives then we will have to talk about the inevitable - a feeding tube.

God is in control and God has a plan and purpose for this all.  We are trying to keep our eyes, and hearts focused on that because it's easy to let this situation get the best of us.  We appreciate your prayers as we go about these next few weeks with these big changes.  Praying that something just clicks in Abby's little body and she would start to desire food and gain the weight her body and brain need at this young age.

I can't make any promises, but I will try to keep you posted on our progress!

Hope you're still awake! :) If so.. here are some 3 year old pics of Abby! Enjoy :)

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….

She's on the Charts!

It's been too long since I've updated you all on Abby...so here I go!  We are happy to say as of her 18 month check up in December, Abby is now on the charts, the very edge of the charts but nonetheless she's on the chart people!! WHOO HOO! :)

Abby is currently almost 20 months and measures in at 30 inches tall and 20lbs 13ozs! It has been a little over 6 months with Clinic 4 Kidz and we are so blessed to be a part of their program!

We still have some struggle with food acceptance and occasional behavioral refusals but in the big scheme of things we are on a great path.  Though Abby's preferred food lists are small we work very hard and precisely in getting in new foods as successfully as we can.  

What does she eat you might wonder?  Well for finger foods she accepts mexican rice, refried beans, cheese, quesadilla (sometimes), eggs, pancakes, mac n cheese (mashed), fries, cheetos, gold fish, and of course fruit! Allyne was here today for therapy and we got her to accept a revised version of fried rice! :)  In her purees we can put variations of any of the following - strawberries, blueberries, raspberries, peaches, pears, bananas, applesauce, mangos, spinach, avocado, carrots & sweet potatoes.  The veggies we have to sneak in with the fruits - and as you can see she doesn't accept too many veggies at this point. In all her puree's we add in 3/4 tsps of saffola oil, 1 tsp of heavy cream and 2 tsps of a grain.

Eating mashed spaghetti noodles with butter with Allyne

We do 3 food feeds a day - each begin with a finger food requirement of 1 oz (most of this we feed to her as her self feeding is still not consistent (meaning if we leave it to her to eat, she 9 times out of 10 won't)), then she has the 2 ozs of puree with the additives in it - and we have 4 milk sessions a day - 3 sessions of 2ozs of milk (milk with carnation instant breakfast), and 1 session of 1 oz of milk - as nursing is coming to an end we will up her milk intake accordingly.  Hydration wise, on top of the milk and water content/milk in her purees, she is drinking an additional 4-6 ounces a day of water/juice - this may not seem like much (which it really isn't), but it's a HUGE increase for her as she was doing only about 1 ounce a day just a few months ago!  

We are happy to report that she has had NO throwing up episodes since October and she is OFF of the erythromycin for the delayed stomach emptying, and is off of the iron supplement as well!  Right now she is only on prevacid for the reflux - she takes 2 15mg pills a day.  We have had to increase this as she started to have a week of extreme food/milk refusal and Allyne suggested we check in with her GI as this is typical behavior when a childs reflux is acting up - and she was right, 3 days later Abby's refusals went away after increasing her meds!

What are things we are still working on?  

- Increase different/new food acceptance

- Drinking her milk in a more age appropriate way - we currently spoon feed her milk along with a few sucks out of a straw though getting her to drink out of the straw takes a lifetime..ok maybe not that long but that's what it feels like!

- Self feeding

- Getting her to eat her calories through finger foods so we can phase out puree's eventually

Trying a new drinking contraption today for her milk with Allyne

And there you have it!  I will try my best to not wait 5 months for another update - man I am bad at this updating thing!

Thanks for reading!!

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

She Eats, She Scores!

Abby has been making amazing progress this past week!  We went for her GI check up today and she measures 27" (up from 26"!!) and her weight is 16 lbs 4 ozs (that's 7.5 ounces in 10 days!) - for those of you just tuning in, this is AMAZING weight gain for Abby...in the past Abby was gaining 1-3 ounces per MONTH! Thank you Lord! Whoo hoo! Happy dance!

In the past 2 weeks of working with Abby we are now to the point where we hardly ever have to say "open ahh" or "big ahh" she just does it! She sees the spoon coming and she opens right up - we have been getting her feeds done in 5-10 minutes.  WOW! What a difference! Thank you Allyne for helping us out SO much, we can't wait to see how Abby checks out in a few months!

I mentioned in a previous post that we noticed Abby's tummy feeling pretty hard and full after feeds... well I think we reached her limit the other day when we offered her some mac n cheese noodles, and then 2 hours later she was throwing up and throwing up, poor baby.  Allyne seems to think that Abby may have some volume intolerance issues, and the pasta was just too much for her tummy to digest and clogged her up.  So we are going to keep the volume right where its at for now 1.5 oz puree 3x a day and 1 oz Carnation Instant Breakfast milk 3x a day.

We were having such a hard time with Abby's milk feeds, most of the milk ended up all over her bib and chair, so I asked Allyne if it were okay to maybe try and thicken the milk into a light pudding so that we could spoon feed it to her.  Allyne was down to give it a try so we added some organic corn starch to thicken up the milk and guess what, Abby took it with no problems and ate it in 3 minutes! Hooray!! I also did a little test and gave her 1 milk feed while playing with toys and 1 milk feed while watching the iPad.  Well when she was watching the iPad she would barely open her mouth - I think she was too zoned in and she couldn't do two things at once! hehe. So toys it is!

Thank you to everyone who has been following Abby's journey and keeping her (and us) lifted in prayer!  We are SO grateful and appreciative!

Here's a cute video of Abby "reading" her "book" lol she is getting cuter by the day! Watch for the hand gesture and PAH! LOL (If you can't view the video, click here).

Okay, bedtime, good night!

Clinic 4 Kidz: Day 3

Another day of therapy has come and gone!  So far we've made some pretty good progress, but this is not a miracle quick fix and Abby continues on with her same behaviors.  The difference is I will now respond to them much differently!

Today we almost reached a caloric total of just under 700 calories!!! So awesome! We increased her solids to 1.5 ozs per feed and her milk is still at 1oz per session.  Abby definitely seems to gravitate towards fruits and sweeter foods, but we really do want to get some veggies in there, so we have decided to start mixing in veggies into the fruit and slowly over time we will increase the amount of veggies and decrease the amount of fruits (for her vegetable foods that is).

Today she had many new foods - yam with pure maple syrup puree which we mixed with some fruit and tried it on its own and she accepted both!  We also tried mini pancakes which she seemed to want to eat but had trouble biting it due to its spongey texture.  We tried Dr. Pragaer broccoli/potato bites, sweet potato fries, sweet potato bites, teriyaki meat ball and raspberries - out of all of that she only liked the raspberries and possibly the broccoli/potato bites.

Ohhh and for breakfast Allyne decided to add whipped cream to her "finger food" time and gave her a little bowl and spoon and Abby was ecstatic with it! Here's a little clip..

I was trained today to feed Abby as well - that was a fun part haha.  The way that they train you is they first feed you (with water on the spoon) and then I feed Allyne and she will do some of Abbys behaviors and I have to react the way I will with Abby.  Interesting concept! :)  Sorry no video of that one...maybe I'll catch Matt being trained on Friday and show you how that looks!! :)

I'm tired today so I don't have the energy to give a detailed low down of the day, so check out the video below for some of todays feeds....

Today was the first day that I did a milk feed and a solid feed and let me tell you it's a lot harder than I thought!  With the milk feed you have to hold the bottle a certain way, you have to put it in her mouth a certain way, you have to say the drink command, but not too often to annoy her, and I have to have my hand under her chin to support mouth closure, but then if she lets the milk spill out I have to put my finger up to her lip to support lip closure... I need 4 hands it seems! haha.

For the solid feed I have to make sure Abby is engaged in her toys, I have to offer the food at the right time with the right amount on the spoon, I have to say "open ahh" first, but not too often like I did in the video so I don't irritate her, I have to say "big ahh" if she doesn't open wide enough, and I have to say "finish" if she prematurely closes her mouth. I have to remember not to say "can you finish the bite" and only say "finish", or not to say "are you ready for dinner" but "its time to eat" - it doesn't sound too hard but to remember what to do and when takes some getting used to!  We are definitely seeing improvement though, in my first solid feed today which was for dinner, I got her to open wide for every bite (with some help sometimes) and she ate 1.5ozs in 10 minutes!!! Last week that would have taken me 30+ minutes or not have happened at all! We're excited!

We will weigh Abby on Friday so I'll let you know how much she gained this week!! Whoo hoooo!!

Until tomorrow... good nighht!!!!!!

1 Year Check Up - Weight Update

Today Abby was seen by her pediatrician (Dr. De Villiers, highly recommend!!) for her 1 year check up - she is now 15 lbs 8.5 ozs, and 26 1/4 inches long.  She has gained 1.5 ounces in the last 2 weeks, ugh that's it?! She has definitely been eating better than she was before but I think that now that she is walking all over the place she is burning up way more calories!

I wish I would have taken a picture of her growth chart, but I plotted the last few months myself on the chart below, so here is a peek at her weight and height growth.  The top of the chart is height and the bottom is weight.

Developmentally Abby is doing great, she is walking, understanding simple commands we say to her, can say agua and oussside (outside), etc etc so that is a good sign! We just really need to continue to work on her weight and her sleep.  I know I haven't mentioned too much about Abby's sleep, but I know that her eating and sleeping are correlated, so let me tell you more about her sleep patterns.

When Abby was first born she slept great for the first 4-6 weeks, she was sleeping 6-9 hours straight a night and it was GLORIOUS! haha!  But as she began to struggle with her eating, her sleep went down hill.  

Currently, she is awake anywhere from 3-10 times per night.  It's a miracle that I am even able to function as every time she wakes up I need to go tend to her, usually nurse her, then she goes back to sleep, this can take 10-30 minutes every time she wakes up! :(  We've made multiple attempts at "sleep training" and she has not respond well to anything so far.  The best option for us and her at this point is for her to be in our room in her crib.  I've had people make comments to me saying that I need to get her out of my room, that she wakes up because she seems me (shes up even when we are not in the room!) etc etc, but until they have lived with her and know how she responds to things, I wish people would support the fact that we are doing what is best for HER and for me... hey I need sleep too!!  

I actually brought this up to her pediatrician today and she agreed and urged me to keep her in our room as no big changes should be made until Abby's feeding is significantly improved, and though it sucks, the calories that she gets at night are still so important. So in our room she stays for now.  We are hoping that she makes quick progress with the feeding treatment and then we will work on sleep, and the cool thing is that Dr. Patel says she will work with us on the sleep issue as well! Whoo hoo!!

They checked her hemoglobin today as well to see where she is at on her anemia, and she's still on the lower end at 10.4, so we are going to try and increase iron rich foods (going to try kale/spinach shakes again!) and her iron supplement as well.  Here's a picture of her after they pricked her finger, she didn't even cry or wince - she was more bothered by having two of her fingers bandaged together! haha.

That's all folks!

Abby Turns One!

Yesterday, June 23, 2013, Abby turned 1 year old!  Wow a whole year has come and gone!  The time definitely flew by, kinda scary!!  We have gone through so much with this little one over the past year and we are thankful that God has sustained her (and me from sleep deprivation!) and continues to pour His blessings on us every day!

It's crazy to go back one year and remember being in labor and all that entailed, and finally having her enter the world and how our lives changed right then and there.  As we watched her grow in the early months I remember thinking, man I don't want her to grow, but then again I'd think, wow just think in 6 months she will be eating like a champ and sleeping through the night...... and then 6 months came and things were not like that at all, so my mind said, just wait until 8 months... and then 8 months came and went... and then I said okay maybe 12 months... so lets see what 1 years old brings to the table, I'm praying for a fully baby tummy and LOTS of sleep at night!! In Jesus Name, AMEN! lol

Abby 1 Day Old and 1 Year Old!

Check out the video below of Abby eating her first birthday cake.  It was interesting her reaction to it!  She seemed to like the frosting!! :)

In the past few weeks we have continued working with Abby, incorporating the tips that Dr. Patel gave us and she seems to have her good days and other days where she doesn't want to eat much.  We have actually started playing some short videos for her (veggie tales!) on the iPad during her meal times and it seems to help a lot!  We found that trying to distract her with toys was a bit difficult as she would lose interest really fast and just wanted a new toy every few seconds then would throw it to the floor and want the next one.. and in the middle of that we'd have to try and feed her.  Didn't quite work too well for us.  But in the last few days we've been using the iPad and she's been eating pretty good!!  I'm hoping that when we start treatment they will be able to tell us how to get her to eat without the iPad, or how to eventually fade it away - I think it's important for her to want to eat and know that food is good for her instead of only opening her mouth when she's not paying attention, not really even knowing what she's doing.  But for now, iPad or not, we'll take it as long as she's eating!!

July 8th is right around the corner, can't wait!!

Mama Bear

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

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

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!