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 2

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

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

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

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

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

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

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

Here are some tips I learned from today:

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

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

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

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

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

That's all for now, until tomorrow!

Mama Bear

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

Evaluation with Dr. Patel

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

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

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

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

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

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

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

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

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

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

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

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

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

Adios!

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!

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

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!