Bye Bye Night Feeds!!

So last week after talking with our awesome new OT we decided that we could come up with a diet for Raygen so we could stop pumping her full of food all night.  I have been a firm believer that feeding her all night long has been the reason she doesn't sleep well and that she seems to have an upset tummy and gas (sorry TMI) issues.  So with a calculator Randy and I sat down and went to work.  Thank goodness for my husband he worked out a great plan. 

So her new feeds are:

5:30am 120ml water with Miralax
7am 100ml food with 60ml flush
10am 100ml food with 60ml flush
1pm 100ml food with 60ml flush
4pm 100ml food with 60ml flush
7pm 100ml food with 60ml flush
10pm 100ml food with 60ml flush
and a 20ml water with her aspirin in there wherever
So her total volume for a day is 1100.

So our goal is to feed her every 3 hours, but to work the 10pm feed into the others.  So as we work the bolus up we can take away the 10pm one.  I am going to start trying to feed her baby food before each bolus.  She hasn't been eating that much by mouth since we have switched, but she is taking the bottle more, so one step forward two back, right?

I am pleased to say though that she does seem to be sleeping better.  Does she still wake up, yes, but she is going to back to sleep easier and I think as time goes on it will only improve.  My life right now does not resolve around 8am and 8pm anymore and it's a wonderful feeling.  Almost normal, Almost.

So Thursday we see Dr. Park, Raygen's Cardio doc.  Please pray for her.  She is going to have an x-ray, echo, and ekg.  Although the appointment isn't physically painful it is very emotionally painful for her.  She cries the entire time and it is hard for her to be touched and messed with.  I'm praying for good news.  I have no reason to believe we wont have good news, but you never know.

Cheering on Big Sister...

This week Zoie had her first two fast pitch games.  She did so good.  

The girls did great for their fist game.  They won!!  Not that winning is everything and I try to stress that to Zoie, but she was so happy.  She had a good hit also.

This was the 1st time Raygen has been to a fast pitch game and it was so important to go cheer on her big sister.  

It was such a pretty day I think it finally hit 70 here!

Raygen was not a fan of sitting in the grass.

Watching Zoie on Friday!  Another great sunny day!!  The girls won on Friday as well!

 We also had a game on Friday and this time Raygen decided to take a nap with grandma.  Such a sweet girl.  Zoie is doing great and really is enjoying playing fast pitch.  I'm so happy she found an after school activity.  

I have some exciting news to share about Raygen's feeding schedule.... So if this weekend goes as plan I'll post my news on Monday!!!

So excited!!!

Watch me go.....

I finally was able to caught Raygen movin and sitting up.  She is so much fun.  She is growing up way too fast for me, but I'm lovin every minute.

Raygen's Two Photo Book Mar 23 2013

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Tasting...

I had to take this.  She looks like such a big girl watching tv with her cup.  I love how she crosses her legs. 

There is nothing on her face, just sunshine, lol 

Checking out her cookie.  Nope, didn't go in her mouth in case you were wondering.

She chewed on her cup for a while on the right spot and licked the sides because it was cold.  She did pretty good though. 

I think she does better with her bottle. 

Playing with our food.  For the last few nights I have gotten her to eat a jar of baby food in her little high chair.  Not in her saucer, so I think she is getting the idea of it.  She gets her last food bolus around 2:30pm and I try feeding her around 6:30 so maybe she is a little hungry.  She continues to do great with the blended diet.  I can still only get her to eat fruit by mouth, but it's by mouth so I'm okay with that right now. 

"Get out of my way Mom!" 

Drinking at work. 





We go next week to see our new OT and I hope she will be impressed.  Raygen has been doing so good lately.  I'm so proud of her.  I hope by the end of the summer were eating ice cream cones together, lol.  You never know???

Playing

Raygen enjoying her ball pit at work.

Happy to see Grandpa. 

Her new favorite toy is her pink elephant.  She constantly hits the on button just so it will blow air and play music.  She loves the air blowing on her, lol, but she is getting so good with putting the balls in it and watching them fly out.  It's great therapy I think for her. 

 

Please pray for our fellow heart friends today:

 

Poppy is finally able to have her chest closed today, Thank God.  It has been open since March 18.  Such a long time.  This is a big day for her.  Pray for Poppy

and

Please pray for Baby Grace who's condition is getting worse.  My heart is aching for this wonderful family right now.  Baby Grace

Thank you to everyone who continues to love and pray for Raygen.  Without you all I don't know where we would be.  She truly is a miracle and prayer, love, and support is our foundation.

This week is a restful week for us.  Next week we have two appointments so we will be busy and we will have lots of medical updates.  I still promise to get a video of her scooting around and sitting up and she finally has started to walk a little with support but putting both feet firmly on the ground.  Our girl is making huge progress lately and we are so proud of her.

Last RSV Shot..

More Cute Pictures of my girl!

Playing at work.  She loves watching Super Why on my Nook. 

She loves hanging out at home.  The remote is one of her favorite things to play with.

 

Today was Raygen's last synagise shot, thank goodness.  She got so upset and cried so hard she made herself sick.  She just was so scared and it's so sad to see her get so upset.  She did finally gain a little weight, so maybe were on the right track with the blended diet :0)

 

The plan for the weekend is just to relax and make my girls happy.  It's not suppose to be nice so I'm planning a baking day, how about home made cinnamon rolls???

Sleep? Whats that???

Well Raygen goes back and fourth on being a good sleeper and last night she slept really good till about 3am this morning and then she was ready to get up and play.  There was no changing her mind.  I am thankful she woke up happy, but 3am, I am really too old to get up at 3am, lol!  But when you wake up to this happy girl how can you not be thankful.  Raygen we love you so much!  As long as your happy you can wake me up anytime.  I know now that waking up at 3am were not late leaving the house at 8am to go to school and work, lol

Relaxing..

This is pretty much how we spent our weekend.  Hanging out and relaxing.  We went to work on Saturday and hit a birthday party and Sunday we stayed home and didn't get out of our pj's.  It was a pretty wet and nasty weekend here so there was no chance of us going out of the house.  This week Zoie starts softball so we better enjoy the few days we have to lay around and be lazy. 

So since we cancelled the MRI this week the only big thing we have is her last synagise shot on Friday.  She might need one more if Washington extends the RSV season, but we won't know till the end of the month.  So far Raygen has been doing good.  An exciting event has been taking place...

SHE IS SITTING UP ON HER OWN!!!!

I can't wait to get a video and show you all.  She doesn't do it all the time because once she gets frustrated she is done, lol, but she is starting to do it more everyday.  This is a huge thing for her.  I couldn't be more proud.

She is sounding a little congest, again....but I'm hoping she will be able to get over her bug without medicine.  Hopefully just running the humidifier during the night will help.  I also need to schedule her 2 year-old wellness check and get her caught up on her shots, but I think I'll wait and do that next week. 

I want to ask that you pray for these three heart friend families..

 

http://babyvictoriasheart.wordpress.com/- Baby Victoria finally got to go home!!!

 

http://prayforpoppy.wordpress.com/- Baby Poppy is needing to release fluid so she can have her chest closed.

 

http://saramcnutt.blogspot.com/- Baby Grace due July 4th needs to stay healthy and strong in mommy's tummy.

 

Hope everyone had a wonderful weekend.  I will try to get a video tonight and post tomorrow.  I think you all will be impressed :)  I know I am!