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 :)

Contending for Abby

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

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

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

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

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

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

Chewing? What's that?

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

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

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

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

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

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

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

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

Until next time….

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

2 Pounds, 2 Inches!

Hey Everyone!

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

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

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

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

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

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

Her new swing at the new house!

Mama Bear

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!