Can you hear me now?

Tim took Avery to her ENT appointment on Tuesday. She had a hearing test and failed yet again. They said she improved since the last time but it's not as good as they would like it. They said she can hear 50 decibels but they want her to be able to hear at 20-30 decibel level. Personally, I think she can hear fine. The doctor also said one of her ears might have fluid in it but not an infection and her other ear had a lot of wax in it, which I am still baffled why the doctor didn't bother cleaning it out. Tim asked what the recommendations were and of course they want her to have tubes. He said there are three options. 

1. Get tubes put in

2. Try hearing aids 

3. Do nothing and risk her speech being delayed even more

The doctor said he recommends tubes. We are to think about what we want to do and then we have a follow up scheduled at the end of March. Tim and I have discussed it and we both agree that we refuse to put Avery through getting tubes again. She had nothing but problems when they put them in last time. She was on 3 different rounds of antibiotics during that time and after a month of having the tubes in they finally decided they were doing more harm than good and took them out. We do not want to go through that ever again if we can help it. I think we are going to try the hearing aids. We don't really have anything to lose by trying them. It's not invasive and we should be able to get the hearing aids covered by BCMH, though I haven't looked into it yet. 

Those of you might remember my friend Amber, who has a 7 month old son named Elias who has biliary atresia. He was put on the organ donor recipient list about a month ago. His condition has worsened to the point that they couldn't wait any longer and her husband's cousin ended up donating a part of his liver. They did the transplant today so I have been thinking a lot about them. I would be a nervous wreck if my baby was going through that. She is always very upbeat and optimistic and is an inspiration for us. If the worst thing that is wrong with Avery is that she has a little hearing loss, I would feel very lucky. Tim and I aren't religious but we feel we are very blessed. We know Avery could be/could have been in a lot worse shape than she is today. If you have a minute, please say a little prayer for Amber's family. I can't even begin to imagine what it is like to go through that. 

Avery's first word is mama. We are pretty sure she knows that mama means me. Sometimes she says mama and sometimes she says mamamama. So that's what makes me second guess if she knows what it means. I swear I have heard her say "up" and "hi" once as well. I can't wait until she really starts talking. 

Mommy! daddy! I'm ready to go outside!

Mommy put my hair in something called a pony tail. It doesn't look like a pony's tail to me but oh well. I like it because it keeps the hair out of my eyes. 

I still get my vitamins through my gtube (this is actually my old gtube). I don't have to get them through the gtube but it's easier for mommy and daddy to do it that way. Plus it saves me from having that yucky taste in my mouth.

Me and my buddy. Mommy gave him a kiss today and then I copied her and gave him a kiss too!

My favorite thing to do now is wave to to the dogs when they are outside. Sorry the picture is a little dark 

Look, I actually have grown in the past 18 months. That is a quarter in the picture so you can get a perspective of the size of my hands and feet 

Daddy is reading me a story

I actually got to go to the store with Mommy today! I tried talking to the lady at the pharmacy. Mommy put me to work and had me hold the cat food. 

I was playing in my car today. It's hard to see in the picture but I have a bunch of drool. I have to wear bibs all the time now. 

Another trip to the ER

Tim and I went to my friend's house on Saturday night to have dinner and game night.  Avery was hanging out with Tim's parents. Tim's mom called and said Avery's gtube fell out. We rushed home, picked Avery up, grabbed the spare gtube we had and drove to Fairview Hospital. We called when we were on our way there to make sure we didn't have to go to main campus. If the gtube comes out, it's not an emergency but you do need to put it back in within a few hours or the hole will close up. 

We were seen right away. I was so surprised at how good the stoma(hole where her gtube goes in) looked. It wasn't bleeding or leaking anything. The doctor had a little trouble getting the tube in. The tube kept bending. I realized he could have made it easier had he used this thing called the "introducer". It's basically like a golf tee that goes into the tube to prevent it from bending. I was watching him try to put it in and I had to turn away because it did not look comfortable for Avery. She was so good. She cried a little when they tried pushing it in but after it was in she was smiling. Tim then said that Avery is his hero. I agree. She is awesome. Which reminds me, I still need to get a tattoo of something that reminds me of Avery. 

After they put the gtube in, I realized it was different than the one we had before.  She had a mini button before and now she has a mic-key button. The mini one is smaller and has a lower profile so I am worried with this mic-key one that she will get it stuck on everything. I need to call on Monday and get a prescription for another spare gtube. I am going to request the mini one this time. 

I felt sorry for Tim's parents because I know they felt bad that it fell out at their house. I told them not to worry about it. It was bound to happen at some point. I'm sure it happens a lot to other kids but since this was our first time it fell out, I wanted to go to the ER. If it falls out again, I feel like I will be able to put it in myself. My doctor I used to work with said she would teach me since her son has one and she has put his in many times. 

Surprisingly, we made it through the month of January with no trips to the ER. We were in and out in less than an hour yesterday which was awesome. 

Here is me without my gtube in. Ignore my large thighs in the picture

Here is a close up of what it looked like. 

Check out my new mic-key tube. Again, ignore my huge thighs . I am happy this trip to the ER didn't end in getting transported to the main campus! Also look at all my teeth! I have 4 that are in and three more are coming in right now so most days I am crabby and drooling excessively. 

Almost 18 months old

Avery has been doing pretty well lately. She finally got to see her cousins this past weekend. The last time she saw them both was before her surgery in November. I think she was very excited to see them. They definitely tired her out and she fell asleep right after they left. Speaking of sleeping, Avery has not been going to bed until very late at night. It is exhausting. She has been going to bed around 11:30 or midnight. By the time she gets to bed, Tim and I are ready for bed. We don't know why she doesn't like to sleep at night. We thought maybe she was scared of the dark even though she has a nightlight so we tried leaving the light on. Nope,that didn't help. Then we tried letting her lay in bed with us until she fell asleep and then we would move her to her crib. The only problem is that she never fell asleep in our bed so that didn't work either. We are kind of at a loss. We used to have a routine where we would feed her a bottle, go into her room and read her a few books and then put her to bed. She started catching on and started to cry when we would read the books because she knew that it was close to bedtime.

 

Help Me Grow came to see Avery today to develop her yearly IFSP (individualized family service plan). We (well actually Tim since I had to work) discussed what our goals are for her for the next 6 months-year. Here is a link that discusses IFSP's.. http://ifspweb.org/benefits.html .They did a little assessment on her and got the same results as the Bayley test. She is very delayed in speech but doing really well cognitively.

 



Avery has an ENT appointment next week. We have had to cancel it twice due to freezing temps and bad weather so hopefully she will be able to make it to the appointment next week. We are hoping to get a hearing test. Personally, I think Avery's hearing is fine but I feel I need to have the doctor verify that.

 

We received our first Groovebook a few days ago. We originally heard about the product when we were watching the show "Shark Tank". Its an app that you can download on your cell phone. You upload 100 pictures and they get mailed to your door, in a book, with perforations so you can rip the pictures out easily. It even includes the date the pic was taken. All for $2.99. What a great deal. Feel free to use the coupon code in the pic below to get one for free. You can learn more by visiting www.groovebook.com

 

Dada, please pick me up.

I am not happy in this picture if you couldn't tell.

Daddy and I got Mommy a necklace for Valentine's day. She loved it!!

 

Mommy's necklace. It symbolizes me and her!

Kaitlin was reading me a story



Eddie, Kaitlin and I.

 

 

I have crazy pants on in this picture, just like Mommy. She was trying to tickle my toes!

Is this how you warm up broccoli?

Here is the Groovebook Mommy was talking about above. It's really neat and I love looking at pictures of myself. I can't wait to get another one next month.

It even shows the date/time the picture was taken

Feel free to get your own book by using the coupon code Svitak16.

In this picture Mommy was trying to convince me that she would buy me a new toy if I carried around her pedometer for work. I think she might have been fibbing, hence the look on my face.



Oh well, I like Mommy kisses so I am going to play along anyway.

Happy Valentine's Day

Some pictures

Sorry it's been awhile since I updated.  Luckily, there hasn't been anything to update about. We did get our free Pediasure delivered to us...124 cans to be exact. We are very thankful of this service provided to us by BCMH (Bureau for Children with Medical Handicaps).

We have been keeping Avery cooped up and we are all starting to get stir crazy. I did email the doctor to see if we could let her see her cousins or take her out once in awhile. She said yes about her cousins as long as they don't have any cold symptoms. She also said it was ok to take Avery out early in the morning or during the week but not to take her out somewhere on the weekends when stores are really busy. I am very happy about this. Avery misses her cousins so we are going to have them over this coming weekend.

I can't believe at the end of this month that Avery will be a year and a half old!

Here is my January Citrus Lane box. I got some Ouchies bandaids. Mommy says she remembers the characters that are on them from when she was little such as Little Miss Sunshine. I also got some wipes for toys/furniture to wipe all the germs off so I don't get sick. Another item in the box was a shape sorter. What's cool about it is that all the shapes are on a string so I will never lose them. My favorite item in the box is a cute Owl insulated lunch bag. Mommy said this will be good to carry my bottles around in once I am allowed out of the house.

I know I am popular but no pictures please

Mommy, why are you smiling at me while we are standing in the bathroom?

Look at all my food!!

Mmmm cookies and bananas

I love hanging out with Daddy

Sometimes I have to share my changing pad with Lily because she loves to sleep on it

Look at me in my Grandma sweater

This is what Mommy sees all the time now... She can't go anywhere with out me trying to climb on her leg

Napping with one of my favorite people.

The dogs really seem to like me when I feed them chips

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?