May 28, 2013 (almost 9 months old!)

Avery will be 9 months old on Thursday! I can't believe it. Time has flown by for the most part(except for when she was in the NICU). She goes in tomorrow for her 9 month check up with the pediatrician. We tried switching her formula to Enfamil Newborn which is what they use at the day care Avery will be going to. She enjoyed the taste but it seemed to be giving her diarrhea so we switched back to Gerber Good Start Soothe. We were hoping she could drink the Enfamil because it would save us a lot of money in the long run because then we wouldn't need to take formula to day care everyday. Oh well. We might try again in a few months. Avery will definitely be on formula longer than a year. There isn't much else to update so here are some pics..

Mommy and Daddy bought me a Johnny Jump up. I like it a lot. Don't worry, they raised it off the ground. They were just letting me get used to it first

My buddy, Chewie, had to come check it out and make sure I was ok

I really like to stand so I like this a lot!!

Happy Memorial Day!

 I am with two of my favorite things in this picture. My cousin, Eddie and Tigger (though this is an imposter. My favorite is the Tigger stuffed animal/blanket combo..this is just a beanie baby)

 Daddy is with two of his favorite things in this picture..Me and Guiness :-)  (just kidding. Mommy is one of his favorites but she was taking the picture)

 Some days I am all smiles!!

And some days I am sad. I didn't feel well on Sunday and Monday :-(

May 21, 2013 (8 months old, 5 months corrected)

There isn't much to update except that Genetics called us last week and told us Avery does not have Kabuki syndrome like they thought she did. They want her to grow and then follow up in 6 months to see what else they want to test for. Umm no. They will not be doing further testing on Avery unless Tim and I notice something. Avery won't be their research project. She is fine. She has a cleft palate, was premature and is small. She was going to be small even if she wasn't premature. There is nothing wrong with her.

And now for some pictures...

This is a picture of me showing off my gums

I got to hang out with a lot of friends this weekend. This is Andrew. He the son of Mommy's friend, Sara. He was born at the end of  March and weighs 12 pounds. 

This is me with Evan. He is the son of Daddy's friend, Sabrina.  He kept telling me how cute I was.

This is me sitting with Evan and his brother, Aaden. Aaden is 9 months old(I am 8 months old). He weighs 20 pounds and is a mover!

 Outside with my new outfit on

Hanging outside with Scarlett

Feeling the grass between my toes

My eyes are still bright blue

Chewie and I relaxing :-)

May 16, 2013 (8 months old, 5 months corrected)

Avery had her first appointment with the Cleft Palate Clinic today. My friend Anne pretty much sums it up by saying its like Trick or Treating except you visit with different doctors/specialists. Avery say A LOT of people today. She was a trooper and did really well the whole day.

You go around and see doctors/specialists in the morning and then in the afternoon, all of the doctors/specialists get together and talk about who they saw today. They all work together on a plan for your child.

This is everyone we saw today...

Speech Therapist- There wasn't much we talked about with her. I am sure once Avery starts trying to talk we will have many questions to discuss. She mentioned about possibly having us go back to trying bottles special for cleft palate like the haberman or pigeon. Tim and I said that's not happening. Why should we use one of those when Avery can suck from a regular bottle and has done the best on the Dr Browns bottle?  Sorry but that won't be happening.

Audiology- They told us today that they believe Avery's hearing loss is only temporary which is great news. Supposedly they told us that after her hearing test right after her surgery on April 23 but I guess too much was going on because Tim and I don't remember that. Anyways, that is good news. They think it's just a lot of fluid blocking her ears. (more on that when we talk about ENT)

Pediatric Psychologist- Again, we will probably speak with her more once Avery is more developed. She told us the reason she is included in the group of doctors/specialists we see is because in order for Cleveland Clinic to have this Cleft Palate Clinic, they are required to have a psychologist as part of the program. She basically asked the story about Avery and how we have been handling everything. We proceeded to tell her that we think Avery has been doing great lately, especially considering everything she has been through. We are happy with her progress. We told her that things were super hectic at first, with Avery being born so early, being in the NICU so long, Tim starting his own business, etc. and we are happy things are slowing down a little and finally falling into place.

ENT/ Dr Anne- Avery was having issues/infections after her ear tube surgery and we saw Dr Anne probably 3 times since April 23. Avery's left ear looked good today. Her right ear still had some gunk/infection. She said they did a culture on her ear last week and there was a yeast infection so she decided to prescribe another oral antibiotic and a different ear drop for her right ear. Hopefully that will clear things up for her.

Pediatric Surgery- Normally this isn't part of the Cleft Palate Clinic but we decided to make it part of it today since we would be at Main Campus anyways. They ended up changing Avery's g-tube out for a larger one. She did really good during this process. It is a pretty simple procedure. They drawn out the water from the balloon in her g-tube, pull the tube straight up and out, place a new one in and then fill it with water. The whole process took less than 3 minutes. She said everything looked really good regarding it and we might not have to get it exchanged again for another year.

Pediatrician- We have a pediatrician at Independence but they have you see a pediatrician as part of the cleft palate team. Avery ended up weighing 10 pounds 13oz. She is still very light but the pediatrician is happy she is gaining again and not plateauing. I did also mention that she probably would have gained more weight had she not had surgery and been sick with multiple ear infections for awhile afterwards. I then asked her about starting solid foods like rice cereal and vegetables. We have tried in the past and Avery would try it but she wasn't very interested. This doctor said not to push it, that she is still very young and not to worry about it. She said Avery will soon be interested in it.

Plastic Surgery/Dr Doumit- Dr Doumit will eventually be performing the cleft palate repair surgery on Avery. He said she looked really good. He said that he now wants to do the surgery about 6 months from now, when she is about 14 1/2 months old. He said her cleft palate is very small and expects everything to go perfectly. He said a few days after surgery she will be able to drink from a bottle. He said no sippy cups because they don't want anything hard/plastic in her mouth with could puncture the spot they just fixed. He also said no solid food for 3 weeks. (I had all of this wrong before so ignore my previous posts..lol). I will be happy when that surgery is finally done. They said the recovery is pretty rough for the first few days. She will spend the first night in the hospital. We follow up with Dr Doumit in about 3 months and will get the surgery scheduled 6 months from now so most likely the middle to end of November. I guess Avery will not be eating Thanksgiving dinner this year.

My cousin, Kaitlin, came over and visited today! 

I love TV.  I even watch it while waiting for my appointments.

Mommy and I went to Target the other day. I did really well until we were about to check out.

I got to hang out with my family outside today after my doctors appointments.

Chewie was interested in sitting by me but I was much more interested in my bib.

I look super cute!

I got to play outside yesterday and Scarlett was giving me kisses

 This was when they were exchanging my g-tube. That red spot on my belly is actually the hole that goes to my stomach. This was when the old one was taken out but before the new one was put in. That hole is where they put my new g-tube in. 

Happy Mother's Day!

Today was my first mother's day. Last year at this time I was probably 8 weeks pregnant. A lot has changed in a year and I wouldn't change it for the world. Even though we have been through so much seeing Avery smile at us everyday makes it all worth it. We love her so much. Being a mom is great and is probably the most rewarding job in the world.

There is not much to update on Avery. This post will mostly be pictures. She has been doing pretty well. Her ears don't seem to be draining as much and she seems in a better mood. She is eating a little better too. She now smiles when Chewie and Scarlett come up to her. I think they will all be best friends, until she starts pulling their tails of course. I still think Avery is starting to teethe. She likes to chew on her bibs and onesies but refuses to chew on any teethers I give her. She has been having diarrhea about 4 times a day. It started right before we started her on the new antibiotics for her ears. She doesn't have a temp or anything so it's either from the antibiotics she is taking or from teething.

Avery had a good time hanging out with her Uncle Greg last week! Thanks Greg for watching her. She apologizes for pooping out of her diaper!

On Thursday we have the cleft palate clinic. We aren't really looking forward to it because it lasts hours and hours. We will see every specialist downtown during that time such as Plastics, ENT, etc. She is also going to get her G-tube exchanged for a larger one that day.

My cousin Eddie loves hanging out with me!

I almost punched Mommy in the face right here

Chewie also loves to hang out with me

I had such a good time on a walk the other day

We went out to eat with Mommy and Daddy's friends, Kandi, Rick, Rich and Natalie. Even though I had a bow in my hair, people still thought I was a boy

I am so happy in this picture..Chewie on the other hand..

Sticking my tongue out at Mommy

Mommy's first Mother's Day. This is me with Aunt Janet and Grandma B..and of course Eddie

Then we went and visited Grandma S

I was awake until it was time to take a picture and then I passed out

Cuddling with Mommy

Mommy's good friend, Deb, gave her this awesome picture frame for Mother's Day. She is so nice!

This is a video of me making noise. This is how I normally sit on the couch. I sit on Mommy and then Chewie always puts his head on her lap. I kick him in the head everyday, I don't know why he still likes me.

May 7, 2013 (8 months old, almost 5 months corrected)

Tim took Avery to see Dr Anne at Main Campus on Monday. She said Avery's ears looked bad but they aren't the worst she has seen. I guess that is good?? She ended up cleaning out her ears, putting new wicks in, giving Avery a new antibiotic ear drop that has steroids in it and also gave her an oral antibiotic. She wants to see how she does wants us to come back next Monday. Well, by the time Tim got home from the appointment the wicks had already fallen out. We agreed that we will never see ENT just for wicks in the future because it would be a wasted trip since they will probably just end up falling out 10 minutes later.  Avery had diarrhea at least 4 times, the poor girl. I feel so bad for her. She has probably never ever felt good a day in her life. I am hoping these antibiotics help her.

Sorry there aren't a lot of pictures. We have been really busy the past few days. I have pink eye again and now the difficult task is trying not to give it to Avery. I am amazed she didn't get it the last time I had it.

I have decided I am not going to say how many days at home in the title anymore since it has been awhile.

I finally like to hold things and grab for things

I still love to eat my fingers. I also like to grab my bib or try to grab my shirt and put it in my mouth. I drool all over the place now too.

Mommy and Daddy bought this wall hanging for my room. Mommy said it describes me perfectly :-)

Day 116 at Home- May 3, 2013

Avery had an ENT appointment today. She has been having green discharge coming out of her ears so I wanted Dr Anne to see it. Dr Anne looked in her ears and said she couldn't even see the tubes because there was so much wax and gunk in there. She ended up vacuuming out Avery's ears. She said the antibiotic drops probably did no good because they couldn't get past all the gunk in there. I told her that when we would put them in that they would just pool in her ears and it wouldn't seem to go deeper inside her ear. She decided to put these little wicks(sponges) in her ears. They would help soak up the antibiotic and pull it down inside her ears. She said on Sunday that we can try to pull the wicks out but if we couldn't pull them out, we would need to take Avery to see her at main campus on Monday. She also said that eventually her ear tubes might need to be replaced if they don't seem to be draining everything like it should. I don't want Avery to have to go through that again anytime soon. I know she probably will once her tubs eventually fall out.

Then I stopped at CCF Independence to drop off some paperwork for her pediatrician to fill out. We are hoping to get Avery into daycare the first week of June. I stopped up in Internal Medicine where I used to work to visit my friends. I was explaining how the ENT appt went and then looked at Avery and realized one of the wicks already fell out of her ears! A lot of good that is going to do. I stopped by the ENT department and Peds department at Independence and no one would put it back in. I called Dr Anne's office and left a message. A few hours later they called back. By that time the wick in her other ear had fallen out. It looks like we will be taking Avery to ENT at main campus on Monday.

Hanging outside with Mommy today

My bff's JJ and Emily. These are Miss Becky's kids. I have another friend Adam who isn't in the picture. I get to hang out with them every Tuesday and Thursday!!

I'm just chilling in the living room watching cartoons

Outside with Mommy today. Don't worry, she kept me out of the sun.

Our whole family (except for Sophie and Lily) went for a walk around the neighborhood the other day.

This is after my appointment today. That thing coming out of my ear should still be in my ear. Oh well, something always goes wrong. I am pretty much used to it by now.

Hi :-)