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!

When Empty, All Done!

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

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

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

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

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

That's all for now! Good night!

Clinic 4 Kidz: Day 5

Today was our last day with Allyne for this month, she will be back August 6-8 for another 3 days of treatment!  This week went by fast, but slow at the same time, it left me exhausted, physically and mentally but seeing how much progress we've made so far makes it all worth it and I'm excited for her to come back in August!  Matt said she really is like an angel God sent to us!  :)

Matt did today's breakfast and morning milk session on his own today and did a great job!  After talking to Matt on how he felt with everything he commented how the whole process seems so overly simple but then when you go to do it there is much more to it.  We are both just so excited (and relieved) that Abby has been responding so well.  Allyne warned us that now that she will not be with us through the day Abby may try to pull her old tricks on us but we have to stick to the protocol.  I actually noticed this last night when I was doing Abby's milk session - she was trying all sorts of different things to get me to stop and give up (let all the milk spill out, stuck her tongue out and wouldn't close her mouth, sealed her mouth shut, turned from side to side, ripped her bib off, etc) and to get control back, but I just stuck with it - ignored what she was doing and proceeded on.  That is another thing that we have learned this week - to not address or even say anything when Abby pulls her tricks out or starts to fight us but just keep pushing forward like nothing.

With Abby's milk feeds we notice that after about 5-6 minutes Abby gets pretty antsy and irritable, so the new protocol is that once we see her start to do this, we then pour the rest of the 1ounce that she hasn't finished into a little cup and syringe feed her the rest.  This is not something I'd like to be doing, but we don't really have an option, she needs those calories.  I took two small videos of the milk feed, one is here, and the other with the syringe is here.

My mom came around 11 and was trained to feed Abby - she went through the whole being feed and her feeding Allyne approach and though it seems silly, it really is very helpful.  Here is some words from my mom (Mama Brown)..."In preparation for my training today I read the blog, took notes and watched the videos over and over.  Today Allyne went over the techniques using herself and I as examples, I'm glad i had my notes  because it helped to refer to them and I was able to add additional notes.  Then it was my turn to feed Abby, Nico was right, it's a little bit harder when you are actually trying to feed Abby.  So much to remember. In the past, I loved to play around and be silly with Abby when i fed her but now this is serious business.  Even my tone of voice was important.  Over all I think I did ok for my first time.  Allyne thought it was a good idea for me to continue to do more feeding so I could become more comfortable, so I stayed to do the dinner feed.  Well wouldn't you know, a few hours later I had a brain fart and forgot a few of the techniques I had just learned.  You may have not noticed because Abby is doing so good but technique is important because we don't want Abby to go back to her old ways. As for her milk feeding it went well. This is a time when I could be a little silly and interact with Abby while she watchs a video.   So I will have to help with feeds at least a couple times a week so I can fill in when needed and not be intimidated."  Thanks mom, yes get the practice, we need a date night! :) 

In between feeding sessions and nap times Abby enjoys playing around the house, going for walks outside and today, I peeked in the living room and saw her dancing, so I got a quick video of it, she is too cute!!!! 

To give you a quick rundown of what Abbys eating looks like during the day, check out her schedule below.

Breakfast - 1.5 oz of puree with 1tsp heavy cream and 1/2 tsp saffola oil, finger foods to eat/play with (finger foods are on her terms so she can eat/taste or not eat/taste whatever she likes)

Morning Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

Lunch - 1.5 oz of yogurt with 1tsp heavy cream, finger foods

Afternoon Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

Dinner - 1.5 oz of puree with 1tsp heavy cream and 1/2 tsp saffola oil, finger food

Evening Milk Session - 1 oz of whole milk with vanilla or chocolate carnation instant breakfast powder

To us this seems like so much more food than Abby is used to, but then I really look at the quantity and it is still so little compared to so many other babies I know at this age (or even younger!) - but it is progress and we hope in the coming months we can continue upping the quantity.  I mentioned in my previous blogs that we were going to weigh Abby today, and I did, but it is a little disappointing after she's been eating so much more.  She's up 2 ounces since Monday.  But after talking to Allyne she said we need to give it a few more days to really register on the scale since reaching her caloric goal just started on Wednesday.  So I'll keep you posted!

Tomorrow we do everything on our own, lets see how it goes!

Lets do this mom!!!

Clinic 4 Kidz: Day 4

Today was another productive day with Allyne, Abby's feeding therapist.  We met a caloric goal of right around 600 calories today, this is great!  I believe Abby has been averaging about 15ozs of breastmilk per day so this accounts for 300 calories (20 per ounce).  Before we started the clinic Abby was eating an average of 100-130 calories a day from solid foods, since Tuesday Abby has more than doubled her solid food intake!  WHOO HOO!!!

We are so happy with Clinic 4 Kidz.  Though Allyne is the only one here, she is communicating with Dr. Patel throughout the day and also with their nutritionist - they both seem to respond pretty quickly which is great!

Today I did the breakfast and lunch feeds as well as all the milk feeds.  Matt was trained for dinner and did half of the dinner session...more on that in a bit.  For breakfast we mixed in some yam and carrot into peaches and mango all pureed and she ate all of it without any problems! We are still slowly introducing veggies to her as we've gone straight veggie before and she does not respond well.  We are hoping that within the next month we can get her to enjoy more savory flavors.  A tip she also gave us is when we are out eating or even at home, if we have a soup or something we can dip our finger in, put a little on Abbys finger and say taste it, just to get her used to new flavors.

This is how we introduce new flavors.  First bowl is fruit, second is fruit with veg, last is all veg

 The awesome thing about Clinic 4 Kidz is they are really tailored to your family and what your home environment is like, how you live on a daily basis and they mold a protocol that is going to fit in with what you already do.  This is something places like the Los Altos Feeding Clinic don't address.  I was telling Allyne that I am out and about a lot and I do quite a few feedings outside the house or in the car, so for lunch we headed to Chilis and Abby ate great.

She finished all her pureed food and then had fun with her finger foods, she even went for my salad (she's definitely showing much more interest in food!) put her hand in it and then licked her hand... check out her reaction below! haha at least she tried it!! (If you cannot view the video, click here).

After lunch we took Abby to the park, mostly to kill a bit of time so we could later do a milk feed in the car.  I was able to get an app for the Gigglebellies and purchase some of the song shows she likes that way we could play them on the iPad without any internet/wifi connection during her milk sessions.  The feed in the car went pretty well, though the last few drinks she was getting pretty fussy but I think she was just really tired!

Allyne began training Matt tonight on doing solid feeds.  Here is a video of how the training sessions go.... yes its a bit silly, but honestly it helps so much to have her feed you and you feel in your mouth what she wants you to do with Abby.  They were both good sports and said I could post this... (If you cannot view the video, click here).

Allyne started her dinner feed then had Matt take over.  We were at first concerned because Matt is a lefty and it makes holding the spoon the correct way a bit more difficult, but Matt did great and he even commented how much of a difference it was to feed Abby - having her open her mouth and us be able to feed her so easily.  The amount of progress we have seen in just a few days is crazy, thank you Lord!  We are also so glad that we went with this clinic, it is perfect for Abby and our family!  The video below is a little clip of Matt feeding her. (If you cannot view the video, click here).

If you would like to see how we do the milk feeds, check out the youtube video here.

Tomorrow Matt will do the morning feed and be trained on how to give her milk, then my mom will come around noon and be trained on both solid and milk feeds!  Allyne will come back for 3 full days at the beginning of August and it is at that time that they will be able to train more people, so we'll have Matt's mom come and my cousin - hey we need babysitters to know how to feed her!! :)

Thanks for following our journey!!!

Clinic 4 Kidz: Day 3

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

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

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

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

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

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

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

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

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

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

Clinic 4 Kidz: Day 2

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

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

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

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

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

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

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

Here are some tips I learned from today:

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

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

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

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

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

That's all for now, until tomorrow!

Mama Bear

Clinic 4 Kidz: Day 1

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

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

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

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

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

Here are some techniques that were worked on today:

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

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

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

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

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

Dr. Patel left, with Allyne on the right.

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

Thanks for all the support and prayers!

ME