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

GI Appointment Update

Our appointment with Abby's GI was today and we received some exciting news! She's gained almost 10 ounces in the past 3 weeks! This is a record for her and we are so happy that we are seeing positive progress!  Her current stats are 15 lbs 7 oz, 26", head circ is 44".

Hoorayy I gained weight!!!!

Abby is still anemic so we will need to work more on getting the iron supplement into her - it just tastes awful and she usually spits it out or throws up.  We've tried it ourselves and our palettes are destroyed for hours - ick!!  We also started her back up on her reflux meds about 3 weeks ago, trying a new med out - Prevacid.  After going through so many tests and ideas we thought lets just try going back on a refulx med, but not the Zantac - well it seems to have helped a lot, so we will be doubling her dosage to see if it gives her further relief.

She is still refusing after about 5-10 minutes, but we are able to distract her enough to get in about an average of 1 oz per feed.  We'd like to get her to 4-5 ozs per feed with the help of the feeding clinic - but we are very hopeful this will be in her near future!

All the glory to God for so many answered prayers: insurance coverage, getting into the clinic in 4 weeks instead of the 6-8 month waiting list, weight gain, etc etc.  We are so happy and are hoping that Abby just continues to improve and improve!

On a side note... a few weeks ago I posted on some new products/tools that we bought to try out.  Well, after using them for a few weeks I'd have to say that I absolutely recommend the maroon spoons, she eats a lot easier off of them since their spoon is shallow.  She is also sucking by HERSELF using the bear bottle!!! Whooo hoo! She will only drink water from it, so we will slowly try to get her to accept new liquids in there as well!

Keep you posted!

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!

Miracles DO Happen!

How do I even begin this post....  Okay let's just get it out from the start, then I'll give you more of the story.  Today, at 4:58 PM, I got a call from Clinic 4 Kidz - they received a faxed Letter of Agreement from Blue Shield stating that they would cover us at the In-Network level for the FULL billed amount!!! Oh em gee wow - GOD IS FAITHFUL.

"Trust in the Lord with ALL your heart and lean not on your own understanding, but in all your ways acknowledge HIM and HE will direct your path." - Proverbs 3:5-6

Happy Mama & Happy baby!!

**Rewind**

Yesterday, after we received the news that our request for coverage had been denied we were filled with all sorts of emotion.  To say we were deflated and bummed would be an understatement.  Last night I sent an email to all the contacts at Blue Shield that I had email addresses for (thanks to working for a small company we have easy access to local contacts at our insurance company).  I wrote a long email and pleaded with them to read the email in it's entirety as I did not feel as though they really understood what we were requesting of them. I knew it was a long shot to get coverage from the beginning of this process, I'm not going to lie, at times trusting in God has been hard, but deep down we knew that whatever happened would be God's will and He would provide.  Within 10 minutes of sending the email, one of the reps wrote me back and said that she would try to push for our case to get re-reviewed, instead of opening up an appeal since that would take 30-45 days, but couldn't guarantee anything.

Then today, I went to Stanford to try and get a letter stating that we've been through their feeding program, that it did not help and that they did not provide the same services as Clinic 4 Kidz. Well this was an extremely disappointing trip to Stanford, as the OT told us she could not (or would not?) write a letter but that we could request her notes from Medical Records.  So off to Medical Records I went, at least it wasn't too hard to get the records, but then I open them up and read her "notes" on the days that Abby saw her.  She had things in there like, there is nothing wrong, she drinks a bottle, mother is just concerned.... WHAT!???  Um wow - how I wish that were my child she was talking about, I mean come on, drinks a bottle!? I WISH!!! Yes I am a concerned mother, but there is 100% validity to my concern.  And if this wasn't a concern, then why is her doctor giving us the option of feeding clinic or feeding tube - there HAS to be a problem.  This just reaffirms that my feelings I had when we first saw this OT were right - we didn't feel like she paid attention or listened to us, she never even EVALUATED Abby, she just sat there and talked about how we should "just shovel food into her mouth, or maybe cheese whiz, or actually good luck I can't really help you."

Throughout the day I was back and forth on phone calls, emails and in my head, trying to figure out how we could just come up with the money to get Abby into the clinic as who knows how long it would take to hear from insurance, and at the end what if they still denied it.  We were even ready to sell our cars, jewelry, furniture, whatever it took.  I actually wrote an email to the Clinic asking them if they could let me know how much exactly we needed to be able to pay for the clinic ourselves as we were not willing to wait months to hear back from insurance, Abby needs this treatment NOW.

On the way home from Stanford I talked to a friend who is an insurance broker, and he was saying how this is going to be a really hard case to fight and it would probably be a long drawn out battle, and that in his time of working with insurance, he hasn't seen insurance agree to pay full amounts like we were requesting.

When I got home I checked my email before I even got out of the car and saw that the Clinic wrote me back.  For the first year of treatment the cost was at least $76,000. Think I was stressed before, well now I was about to just sit in the car and cry!  But then... I got the phone call - "You're never going to guess what just happened, we got the letter of agreement from Blue Shield for full coverage at the in network level for the entire billed amount." ARE YOU JOKING!?!??! A tear or two may have fallen, I think a bug flew in my eye or something.... He told me that this has never happens, for just 1 day after they deny it for them to turn around and give them the letter of agreement for exactly what we asked for.  I told him it's because GOD provided and He is faithful!

So we are doing the happy dance over here and praising and thanking God!  God says - "Why so downcast O my soul, put your hope in God!" Forgive us for doubting at times along the way Lord, you have proven time and time again that you LOVE us, that you will provide for us and to YOU be all the glory!

Feeding evaluation is tomorrow, can't wait to see how it goes!!!

Thank you thank you for ALL your prayers, we've needed them and will continue to need them as we begin treatment soon!

Blessings!

Happy Mama

Insurance Update : No Bueno

Earlier today I got an email from Clinic 4 Kidz stating that they talked to Blue Shield and they agreed to cover their services.  I jumped for joy, sent out texts letting our families and a few close friends know the news, I did a blog update with the news, and as soon as I posted the blog update on Facebook I got a call back from the Clinic... umm sorry but that coverage is not what we thought... NOOOO :(

So here's what's going on... BSC (Blue Shield), has said that they will only cover the clinic as an out of network provider and only at their agreed contracted rates.  What does this mean?  The out of network part basically means that we just pay more out of our pockets than an in network coverage would cost.. we don't really care about this part.. but the agreed contracted rates means that, say for instance the upcoming feeding evaluation that we are having on Thursday costs $1500, well BSC says, no we only agree to let you (the clinic), "charge" $200 for this service so thats all BSC will pay, so then the Clinic would then send us a bill directly for the remainder, which in this example would be $1300.  This is NOT okay.

When asked why BSC would not cover it fully at the in network level they said it is because Stanford offers the same services and Stanford is already in network with them.  Well BSC, I've already told you 5 times already that we've already BEEN to Stanford and no they DO NOT offer the same services, they told me themselves!!  So now I am trying to find someone at Stanford who can write me a letter stating that they don't offer the same services, and the services they do offer we've already tried them and it did not help Abby.  UGH this is so stinkin frustrating!!!!

So what now?  Now we have to file for an appeal which can take several months.... The clinic has told us that they will NOT start treatment until insurance agrees to cover their services, which now jeopardizes the July 8th week of when we were hoping to get treatment started.  The only other way around this is for us to come up with $35,000-$45,000 and pay for the clinic in cash.  Yea let me just pull that out of my back pocket! >:(

Today has been a roller coaster of a day and leaving us frustrated, sad, angry at blue shield for not listening to us and worried for Abby's sake... but I know God tells us not to worry, He loves us and cares for the birds of the air, how much more does He love and take care of US.  Be Still and know that He is God... repeat this over and over Nico, no ifs ands or buts.

Continued prayers appreciated as we begin this uphill battle with Blue Shield.

Sad Mama

Here's a picture of Abby to lighten the mood ;)