No more formula...

We got to go to our favorite place on January 22…Infant Nutrition at Children’s Hospital, Shaker campus. We hated going there for the feeding clinic. Luckily, this appointment wasn’t bad. The reason we were going there is because the doctor wants to get Avery off of formula and on Pediasure. The dietician measured and weighed Avery (still a peanut at 25.5 inches and 14 pounds 2 oz) and then we discussed what she was eating. She said it should be easy to switch over to Pediasure since we were already mixing her formula to 30 calories and Pediasure is also 30 calories. Some babies’ stomachs can’t handle the 30 calories because it is too harsh. She was going to contact Dr Peterson to write a script and get it sent to a medical supply company. It looks like BCMH will be covering the Pediasure which is great news because each bottle is $2 and she was going to go through about 4 bottles/day. If she is on Pediasure for a year, we will end up saving about $2880 by getting it through BCMH. The plan was to start mixing half formula and half Pediasure and slowly adding more and more Pediasure and less formula. We are on straight Pediasure now and she is doing fine. 

Avery had an ENT appointment scheduled for January 23 but it was cold out so we rescheduled it to today, January 28. I ended up rescheduling it again since the wind chill was supposed to be -20 degrees. We rescheduled the appointment for the end of February. Avery has a Help Me Grow appointment tomorrow. We need to tell them we have been referred for speech services now so we will have to start scheduling those appointments.

The reason I put the organ donor picture up below is because my friend Amber, whom I went to Ohio University with, has a baby who is currently on the organ donor recipient list. He was born with biliary atresia and needs a liver transplant. You could read more about biliary atresia here. http://digestive.niddk.nih.gov/ddiseases/pubs/atresia/

Her baby was born 5 weeks early. For awhile I thought Avery and her son, Elias, were having competitions to see who would scare their moms the most since they have both in the the hospital multiple times, see specialists, etc. Currently, I am sad to say that Elias is winning. They live in Columbus and last week had to be taken by helicopter to Pittsburgh to get testing and be prepared for the transplant. Now they are going through the longest wait, waiting for the call that will change their son's life.

Hi everyone! I have to wear a bib pretty much all the time now because my favorite thing to do is drool!

Say Cheese!

 I was eating a cookie and decided to smear it all over the oven.

Sleeping on Daddy

I love putting things in this little compartment on my table. I put my Little People in there and even my socks.

 

While looking at this book, I always try to kiss myself in the mirror

I like to sit on Daddy's shoulders

Thanks Nichole for giving this toy to me!

Swallow Study

Avery had her swallow study on Wednesday. She did good. I thought for sure she wouldn't eat because the taste of the barium but it didn't seem to bother her. The swallow study was pretty neat and I'm glad Tim and I got to be there and see it happen. First they tried pudding, then formula and finally crackers. Out of 46 swallows, she had one aspiration. The only problem was that when it happened she didn't do anything. Most kids cough when something goes down the wrong pipe. They said if she gets aspirations that could be a major cause of her breathing problems. They said since it only happened once during the test, it's not bad enough to have to thicken her formula. They advised us to keep her really upright when feeding her. We used to lay her in our arm or on the arm rest of the couch and now we are trying to keep her more upright. They also said she is capable of eating what a 13 month old can eat which is her corrected age. We will start giving her new things to try. We will be trying to send her to daycare agin starting in April. I heard the flu season is going to be really bad this year so Tim is now staying home during the day with her and then working when I get home. It really sucks and I wish she would be able to go to daycare. We are so happy Tim's sister, Terri was able to help out for a few weeks. We are excited she just was offered a new job but Avery (and Tim and I) are going to miss her. She did great watching Avery.  Tim's mom has also been a huge help. She has been coming over after work and watching Avery until I get home from work. It let Tim get a few hours head start on his jobs. Otherwise he would have to wait until I get home around 5:30. 

This week Avery has an appointment for nutrition. We are going to see how much pediasure she should be taking and for the dietician to fill out forms for BCMH to get her Pediasure covered. Until then we have been giving her formula, along with baby food and some random pediasure. She also had an appointment with ENT and they were supposed to be scheduling a hearing test. I am going to call them tomorrow because if there is no hearing test scheduled, I don't want to drag her out to see ENT.

Thanks again to Tim's mom and dad, Greg, Lauren and Terri for watching Avery these past few weeks!

I love listening to mommy talk even though I have no idea what she is saying

I am really good at making a mess of mummy's coupons!

I was helping daddy with the tv

This is the weird chair I sat in for the swallow study. Mommy said she wished she would have taken video of the food going down because it was really neat to see.

I love walking along the couch. I think I am a gangster with one pant leg up and one down...didn't they used to do that in the 80's/90's?

Look how cute I am when I sleep. Daddy said the other day that he couldn't believe I was his child because I am so cute!

Look at all these chompers in my mouth! Yes, I am playing in the bathroom because mommy was trying to get ready.

Mommy asked me where my stinky feet are and I showed her my foot!

I LOVE when mommy puts this lipstick on me. I tried putting it on mommy and I ended up punching her in the face. 

I hate to have my hands touched so the doc said to let me play with different textures. I love eating pudding but I'm not a fan of playing with it. 

No one can see me so I can poop now. Seriously, if you see me in this position for a minute I am probably pooping.

Hmmm what kind of trouble can I get myself into?

One Year Ago Today...

One year ago today we brought Avery home from the hospital after 132 days in the nicu! What a great day it was :-)

I never knew a little girl could bring so much joy (and worry!) to our lives. I wouldn't change it for the world.

Today she went for her Bayley developmental test at Hillcrest. It was weird to be back there after spending 4 months there a year ago. I definitely didn't miss it! Here are some of the activities that they did with her and how she did with each activity.

1. The first thing Angela did was ring a bell and placed it in front of Avery. Avery picked it right up and rang the bell.

2. Another activity they did was place a little plastic block in front of her. She picked it right up. Then they placed another one and she picked it up with her other hand, while still holding the first.She then banged the two together. Then Angela placed another block down and Avery picked it up without putting down the other two.

3. She placed 3 Cheerios down on the table and Avery picked them up pinching her fingers together. Angela then placed them all into a little plastic bottle and shook them. She dumped them out and let Avery try. Avery eventually put all Cheerios into the bottle and shook it. Angela then dumped the Cheerios out, showing Avery how to dump them out. She put them back in the bottle and wanted to see if Avery could get them out. Avery didn't turn the bottle upside down to get them out, she shook the bottle until they flew out. She still passed that activity since she got them out of the bottle.

4. She then twisted a lid on the bottle to see if Avery could get it off. After talking for a few minutes, Avery got the lid off the bottle which impressed me.

4. Angela then placed 2 washcloths on the table. She showed Avery she placed a bracelet under one of the washcloths. Avery picked the washcloth up right away and grabbed the bracelet. Angela then placed the bracelet under the other washcloth. Avery picked it up right away. Then Angela stuck the bracelet under the washcloth and performed the old magician trick of moving it all around. Avery selected the correct washcloth that the bracelet was in.

5. Angela then placed a car on the ground and made it "vroom" pushing it back and forth. This is one activity that Avery did not complete. She picked the car up but did not push it back and forth.

6. Next Angela placed the car in "the garage" which was a clear plastic box with an opening on the one side. She told Avery to get the car out. Avery tried moving the garage, instead of placing her hand in the opening to grab it. Another activity Avery didn't complete.

7. There were a few more activities that Avery did complete and the last one that she didn't was the rubber ducky. Angela showed her a rubber ducky and then squeaked it. Avery picked up the duck but refused to squeeze it.

Angela then asked if Avery talks or babbles. We said not really and that we might have heard "mom" a few times but maybe not. We told her we definitely think she knows the words momma, dada, and baba for bottle. She asked Avery to grab her baba and Avery started crawling towards her bottle. Avery barely made a peep during the hour long test.

Angela scored the test and gave the results to Dr Peterson, whom Avery originally saw in the nicu. She went over the results with us. Avery actually tested as a 5-7 month old in language. We knew she wasn't really talking or babbling so we weren't really surprised with these results. Dr Peterson said that the cleft palate and surgery could have definitely played a part in this so she wasn't super concerned. She did recommend we get Speech/OT from Help Me Grow.

Overall, Avery did well cognitively. They said a score of 85 is about average and she scored 100. She tested as a 13 month old which is great since that is her corrected age (12 months and 29 days is her corrected age to be exact). Dr Peterson said she was very pleased with the results and thought for sure that she wasn't going to do as well as she did.

She then examined Avery and came up with a plan. We will see nutrition one more time because they want her to stop eating formula and be exclusively on pediasure. Pediasure is expensive (6 8oz bottles for $12) but she said BCMH would cover it so I am excited. We will be seeing ENT and Audiology and having a repeat hearing test done. We will also see Dr Freidman/neurology to see how she is doing. Avery had a diaper rash which we suspected was yeast since we have been using diaper rash creams for the past week and nothing has helped. They looked in her mouth and saw a little bit of white so they think she might have thrush. They prescribed a mouth rinse and also a lotion.

Sorry for the long post. Just wanted to fill you in on what happened at today's appointment. Avery has her swallow study scheduled for next Wednesday and also a follow up/synagis shot with the pediatrician the same day.

I have been having fun with Aunt Terri watching me during the day. She put my hair up one day and when Mommy took it down at night, this is what it looked like!

My first time eating scrambled eggs. I seemed to like them

Another tooth is coming in!

Avery had a good week last week, being watched by members of Tim's family. We appreciate all of their help!

On Thursday this week Avery has an appointment for a Bayley development test. It is with one of the neonatologists that saw her in the nicu. The appointment lasts about 2 hours and they do different exercises with her to see where she is developmentally. I know she is behind but I don't really care about the results. I just think about how far she has come and am amazed.

Here is my December Citrus Lane box. I received some lotion, a stacker, a new book and a canvas/paint to put my little hand prints on.

Lily wanted to try out my new car.

I received the puppy from Great Grandma

I received a xylophone from Grandma and Grandpa

Smiling at Daddy

Playing with my new barn from Aunt Janet. I love to put everything in the silo.

Sitting in my new chair

Making thank you cards with my footprint.

I love standing in my crib. Mommy and Daddy are going to have to drop the mattress so I don't climb out.

I love sticking my tongue out now. I am getting a new tooth in the back of my mouth on the top left side. When anyone sticks their tongue out at me I always smile.

Watching tv while sitting in my chair and chewing my bracelet.

Pigtails!!

Mommy got to work part of the day at home last week. I was her little helper. She said I was the cutest coworker she has ever worked with.

We used the canvas from my Citrus Lane box and made our hand prints. Daddy's is in blue, Mommy's in red and mine is in green :-)