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 :)

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 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

Clinic 4 Kidz Update

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

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

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

Adios!

Latest Insurance/Clinic Update

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

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

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

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

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

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

 

Feeding Clinic in Bay Area Evaluation

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

Start of my review:

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

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

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

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

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

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

That's it for now... 

Good Night!

A Call to Prayer - Feeding Clinic Update

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

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

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

Prayer Requests:

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

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

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

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

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

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

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

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

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

Love,
Mama, Papa & Baby Bear ;)

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

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

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

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

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

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

Blessings!
Mama Bear

And Then Some Days She Eats

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

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

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

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

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

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

Nite Nite

New Feeding Products to Try

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

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

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

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

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

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

Buh bye!

Abby vs Food - Video Post

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

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

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



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

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




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

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

Bye!

"She'll grow out of it"

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

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

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

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

Myth - Eating is Instinctive

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

Myth - Eating is Easy

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

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

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

And now you know.  The end. 

<3

Information, where are you!?

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

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

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

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

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

Mama Bear Out!

I know your tricks, Mom!

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

 

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

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

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

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

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

Adios!