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!!

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

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

Feeding Clinic in Bay Area Evaluation

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

Start of my review:

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

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

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

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

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

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

That's it for now... 

Good Night!

A Call to Prayer - Feeding Clinic Update

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

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

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

Prayer Requests:

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

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

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

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

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

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

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

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

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

Love,
Mama, Papa & Baby Bear ;)

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

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

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

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

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

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

Blessings!
Mama Bear