Wednesday, December 30, 2009

Blue Eyes

I am often stunned at the gorgeous shade of blue that Julia and Emma have for their eyes. Everyone always comments on Emma's eyes as she uses them so expressively that you can't help but notice them. What people sometimes don't notice is that Julia has the same shade of blue eyes. When she was little people would stop us on the street to comment on Julia's blue eyes, but now that she is a toddler and rarely sitting still it's hard to notice them as they go by in a whirlwind of toddlerhood!

I took a photo of Julia on Christmas Eve as we were leaving the house for Church. She was sitting still since she was buckled in her car seat and looked at me when I called her name just in time for me to snap her photo. Although there was a lot of background in this picture, when I saw it I could only focus on her gorgeous eyes. I love this photo and I wanted to add it to this journal so I would remember it later.

I love you, my little blue eyed Julia.

Tuesday, December 29, 2009

Another year

Today is my birthday. I've been overwhelmed with Happy Birthday wishes from so many people and I feel very blessed to have so many people care about me. I just love birthdays! There is something wonderful about celebrating the day we entered the world.

Today I was able to spend the morning and afternoon with Julia while Chris took Emma for her HBOT treatment. We had a wonderful time and Julia really blossomed in all the one-on-one time with Mommy. Although we make one-on-one time a regular part of our routine for both girls, for some reason today felt extra special. I know we both felt it. We spent the morning running a few errands, playing at an indoor amusement park with some of Julia's friends and selecting a couple new Leapster games at Toys R Us. When we came home we were happy to see that Emma and Chris had just arrived back and the girls took a nap. Tonight we went to dinner together and laughed a lot. As a family. What a perfect way to spend the day! Now I'm ready to tackle another year.

Monday, December 28, 2009

Photo Collage

Chris gave me an online photo editing course as a Christmas present this year and I love it! I just completed the online classes and have started editing some recent photos. What I learned is that it takes a lot of time to edit the photos just right!

That means that I will probably only edit a select group of the zillions of photos I take and will *try* (please go easy on me as free time is few and far between around here!) and optimize the photos I post on this blog. After all, if you only see a few of the photos I take I want them to look their best. Of course this could all lead to a better camera for next year's Christmas list.....but I digress.

I just put together this photo collage to showcase a couple of recent photos of Julia. She is such a beauty inside and out!

Saturday, December 26, 2009

Christmas Joy

We hope everyone had a Merry Christmas! We certainly had a wonderful time. We are so very blessed this year. Everyone is relatively healthy and we were surrounded by our family for both Christmas Eve and Christmas Day. Everywhere we look people seem to have large smiles on their faces and we certainly have felt the spirit of the season this year.

In holding with our Christmas tradition, we went to Church with my parents. Emma loves going to Church and Christmas was no exception. She was SO HAPPY to see everyone at church. It was very crowded with people and Emma shined her smile on everyone! Her smile is infectious and it seemed to me that her smile certainly brightened the day for everyone who saw her at church. After mass we headed to my parents house and everyone had a lot of fun as we ate, played, visited with Santa, sang Christmas carols and opened presents.

Julia was very excited about Baby Jesus' birthday and she sang Happy Birthday as we placed him in our nativity. This year seems to be magical for Julia. She understands more about Jesus' birth story and often tells Emma the story with help from her First Christmas book. It is so cute! She also helped me gather some food for the food bank and presents for the toy drive for those less fortunate than us this holiday season. She is starting to understand how lucky we are to have so much and she has such a generous, giving heart that selecting toys and food for those less fortunate made her very happy.

We also talked about Santa this year, but since Julia is still a bit *terrified* of Santa our focus stayed on Baby Jesus. However, she was so excited on Christmas morning to see everything Santa left for her and Emma. It was so cute! She told me that Santa Claus must know her very well since he knew just what she would like - he brought her so many things that she just loves!

As for Emma, she was a bit wiped out on Christmas morning and would probably have slept late if we didn't wake her to check out the presents with Julia. She seemed to like most of her gifts, but headed off for a nap pretty quickly so she could rest up before we headed off to Chris' family for Christmas dinner and lots more fun!

We wish you a very Merry Christmas as you celebrate this wonderful time of year!

Tuesday, December 22, 2009

HBOT day 1 and 2

We've been investigating hyperbaric oxygen treatment (HBOT) for the past few months and this week decided to give it a try with Emma. The place we are using is within driving distance, but it's a bit of a long drive at about 1 hr. 40min. each way. The drive is beautiful - through Lancaster County, PA complete with rolling hills, animals and farms, and the Amish community driving their buggies - but it is still a long round trip drive. Oh, and did I mention that we have about a foot of snow on the ground right now? Well, lucky for us the roads in PA are really well kept and pretty clear for driving. Unlike the road in front of my house, but that's another matter all together.

We were glad that Chris had off from work due to snow so he could tour the facility with me before we made our decision. The doctor of hyperbaric medicine was there along with the nurse to answer our many questions. Afterwards, they offered for Emma to start that day if we were interested. We felt as comfortable as we would probably get so we decided to take them up on the offer.

When we arrived there were three people receiving HBOT. One was a young Amish girl and Emma was going to use the chamber that she used. I was nervous about starting this treatment with Emma and had to think to myself how nervous the Amish family getting a treatment for their little girl must have been before their first session! That calmed me down a bit.

The chamber is pretty small and Chris went into it with Emma for the first session. I posted a photo so you can see just how cozy the chamber is with not much room to even move your arms around when laying on your side. Emma seemed to love looking around at everything going on in the room and wasn't the least bit phased by the cramped quarters. Chris chewed some gum to clear his ears and didn't complain too much about the small space so the first session was a rousing success.

Today we went for another session - just me and Emma. When they started to put me into the chamber I panicked and had them pull us back out. We moved to a different chamber where we were loaded feet first instead of head first. I was still nervous and panicked, but managed to hold it together for about 30 minutes and just kept wondering how on Earth I would be able to go in with Emma for another 38 sessions! At about 30 minutes - pretty much when everyone was convinced I had settled down and was over the hump of my nervousness - I asked them to stop and let us out. Emma was fine and happy as can be, but it was me that needed out. I felt like I let Emma down but she seemed happy as ever and not nearly as sad as me.

After a bit of discussion we decided to let Emma try the chamber solo. Chris and I had been giving her a bottle to help clear her ears during pressurization but she really didn't seem like she needed it. We all felt that Emma seemed quite capable of clearing her ears on her own and that meant that I was not necessarily needed to give Emma a bottle in the chamber. We propped up a couple of pillows so Emma could see all around and added a couple of blankets on either side of her to keep her in place a bit more. We also covered her with a blanket since she wouldn't have the extra body in there to keep her warm. Then she entered the chamber for the remaining 30 minutes of the treatment. She did GREAT! Smiling the whole time, looking all around, watching a bit of tv, laughing at a bit of peek-a-boo I played with her. We even put a mirror on top so she could look at herself and she kept moving both arms to touch herself in the mirror. I was nervous with her alone in the chamber and didn't leave her side, but she really seemed happy and was moving her arms all around in a manner that she wouldn't be able to do if someone else was in there with her. So, I think it worked out OK after all.

We have another session scheduled for tomorrow and then a few days break for Christmas. The plan for tomorrow is to see how Emma does on her own again since I just don't think that I can get over my claustrophobia and join her. I used to think that I could do just about anything for love of my little girl, but I guess I'm learning that sometimes I just have to be a bit more creative to get to the same end result.

I'm going to keep a log of any changes we see in Emma during her HBOT treatments so you might see an update from me on HBOT in about a month.

Saturday, December 19, 2009

Photo with Santa

It seems that a nice photo with Santa is the standard right of passage for children and Christmas time. I used to think that the visit to Santa was for the children - so they could tell Santa if they were good and suggest some items he might want the elves to work on for them. However, now that I have children, I have come to the conclusion that the visit to Santa is really for Mom and Dad so we can check off the list one more completed holiday tradition - the celebrated "photo with Santa."

Each year we join the ranks of parents who have gone before us to try and get a good photo with Santa. We have made it to the mall but NOT to the line to see Santa because the very idea of getting near Santa sent Julia into hysterical cry mode. This is Julia's fourth Christmas and she is only now starting to slightly warm up to the big guy. As for Emma, well she has always loved people so it's no surprise that she is more than happy to hang out with Santa Claus.

Julia's preschool had a Christmas party and Santa and Mrs. Claus stopped by for a visit. We were pleasantly surprised to be able to get a nice little visit with them and even posed for a family photo. Julia was very fond of Mrs. Claus, so I think that is the reason she isn't all red eyed and crying.

Thanks for the visit Santa and Mrs. Claus! We hope you are able to stop on over at Christmas - we've all been really good this year!

Monday, December 14, 2009

Hear, Hear

The not-at-all-secret BIG news in our house is that Emma now has two cochlear implants. I did a post on the surgery here. It seems like just yesterday that we were dealing with the multiple insurance issues, change of surgery date and trying to fend off the H1N1 virus! The surgery came and went without any complications, thank God, and we have kept quite busy ever since.

Truth is, our everyday lives are quite crazy with therapies, appointments, and extracurricular activities that I didn't realize how quickly the activation date would come! When we were waiting for Emma's first CI activation it felt like FOREVER between the surgery and the initial stimulation (activation) and I think this time, since Emma already was hearing quite well out of her right CI, the time went by much quicker. Which is quite strange since it was a 5 week wait for the activation vs. 3 weeks wait in 2008 with her first implant.

Waiting patiently before activation

On Dec. 7th Emma heard out of her left ear for the first time ever! Her reaction was similar to when her right ear was activated in that she jumped a bit when it was first turned on and then she let out a HUGE smile. She looked all around the room at everyone smiling. This was such a huge moment in time for us! We started discussing a second implant with the team before she even received her first and our journey from one to two implants was just shy of 1 year since her right ear implant was activated on Dec. 10, 2008.

Sporting the Nucleus 5 and smiling at activation

Emma did so well at the appointment even though it took place right at nap time and it took a long time. She is lucky that she was able to receive the latest implant released in Sept. 2009, the Cochlear Nucleus 5. She has two of these external devices and we are using one on each ear and using the older Nucleus Freedom models as her back-up device.

Bilateral implants!

There is a learning curve to the Nucleus 5. We are getting used to the new device operations and the remote assistant (which looks like an iPod) feature. We are also still figuring out the best way to wear the device so it doesn't keep falling off her head. We pulled out the pilot caps again to help keep them intact and are using the toupee tape quite liberally. The right device seems to stay good but the left device falls off quite frequently. This is mostly due to some residual swelling in the area of the implant that will decrease over time. I remember from the other side that it takes a few months for the swelling to go away so the magnet to really "seat" correctly on the head and avoid falling off constantly.

I can't help but be amazed and so thankful for this technology and the world it has opened up to Emma. The access to sound really has changed Emma's life. She has made so much progress in communication and motor control since she tapped into sound and everyone can see the changes - they are that major! At the same time, though, I still wish that Emma wasn't deaf so she wouldn't have to deal with us fussing with her CIs or attend hours and hours of therapy to learn to listen. But she is and she does and we're with her every step of the way so she isn't going through this alone and she is making amazing progress.

How amazing you ask? Well, in just one week with bilateral hearing, Emma has impressed everyone including her Auditory-verbal therapist who is a bit hard to impress! She is turning to sounds quicker, with a noticeable decrease in the amount of time it takes her to process the sound and respond to it and is pretty much spot on when it comes to localizing sounds. Emma has also demonstrated good sound awareness by picking 4 of 4x the correct box with an object in it when presented with identical boxes that were shaken with an object in one and nothing in the other.

Emma can hear! Out of both ears!

In the past couple of months we've heard her say ah goo, boo, oh yeah, go, blue, water, her version of Julia, and her sound for Finnegan. And, just this week I think she could have said Ma (with lots of prompting, but I can't be sure and no one else was around to hear it!). On Nov. 30th and Dec. 11th she said "I love you" to Finnegan - click here to see the video - and I can't help but think that she'll belt out an I love you to me, Chris and Julia very soon. I can't help but think how much a CI has opened up Emma's communication and are thrilled to see how she does with two implants.

There is a saying I've seen that says "Talk is cheap unless your deaf. Then, it's priceless." This is so true!

We are truly blessed to have such a wonderful, hard-working little girl. We are blessed to be working with such an amazing cochlear implant team that has taken the time to get to know Emma and believe in her unlimited potential.

Both my girls amaze and inspire me everyday, but in different ways. And this Christmas I feel very blessed.

Wednesday, December 9, 2009

Christmas Tree is up!

We put up our Christmas tree tonight! What looked like a small tree out in the field turned out to be a pretty big, full tree in our house. Julia was so excited to get the ornaments on the tree and put herself in charge of overseeing the operation. Emma thought it was hysterical that we brought a tree into our house and decked it out in lights, but got into the fun of it and helped us put a couple of ornaments on the tree.

It was really great to pull out so many of the ornaments that have special memories for us. There is the Hawaiian Santa from our honeymoon, the Bride and Groom from the year we were married, the ornaments from the girls' First Christmas, the hand and footprint ornaments from Julia's first Christmas, the black Lab ornament from Finnegan's first Christmas, homemade ornaments from over the years, etc. It's amazing to me how many memories come back when trimming the tree!

We put Emma near the tree in her Child Rite chair and she scooted herself under it and kept poking her head into it and looking up at us trimming the tree. It was so cute! When we were done hanging up all the ornaments Julia said she thinks we need to go out and get more - she was sad we were done! I told her we could start a tradition of picking out a new ornament each year and I'll take her out soon to buy a new ornament and I think we are all looking forward to this tradition.

We also hung our stockings and put up the nativity set, so now we are officially ready for Christmas!

Sunday, December 6, 2009

It's beginning to feel like Christmas

We're starting to get into the holiday spirit around here.

A photo of me and Chris after he finished putting up our house Christmas lights

On Friday we had a busy day. The girls and I headed into the city to see the 3-D Christmas show in the Comcast building lobby. We got a great on-street parking spot with a meter that saved us a TON of money on parking. Once we got out of the car, though, I realized that I had given all our change to a homeless person about a week ago and didn't have any quarters! When I was telling the girls we needed to find some change for the meter a man that was walking by us double backed and gave me some quarters for the meter and didn't want anything in exchange. What a lovely thing to do! We then headed over to Chris' school for the book reading and book fair. The storyteller had brought her cat and dog and the girls loved seeing them. Overall, the day was so pleasant that I remarked to Chris that it really did feel like Philadelphia is the City of Brotherly Love!

Julia wore her new shoes into the city!

We attended the cochlear implant program Christmas party on Friday night, which kicked off our holiday party season. The girls had a lot of fun doing the crafts that were set up around the room and Santa even showed up! Emma loved Santa, Julia screamed and cried and wanted to go home once he arrived.

On Saturday we had our first snowfall of the year. It was wet snow, but it still felt great to see it coming down and sticking in the yard a bit. Today the sun was shining again so we went and picked out a Christmas tree, chopped it down and hauled it home. We went to the small Christmas tree farm from last year and realized they weren't really selling trees this year but they decided to let us have our pick of the field anyway. The trees were fantastic since they weren't picked over at all and I think our tree this year is the best one yet! Since it was such a nice day Chris focused on getting our outside decorations in place and we decided we'll bring the tree inside and put it up later this week. Julia had a ball roaming around on her summer toys outside and Emma joined us in her stander and loved all the action. Since we recently purchased a large ladder, this year we were able to string lights along the entire house and it looks so nice! We also have a blow-up Christmas tree in the yard but it seems that the penguin and snowman don't seem to want to work this year. This doesn't upset me since I'm a bigger fan of the nativity set, but Chris and the girls really liked the extra decorations in the yard so Chris will try and get them working again. Overall, it's really beginning to feel a lot like Christmas!

Tuesday, December 1, 2009

New Look

So, do you like the new festive look of my blog? I love it! Thanks to Tara at TMI for creating and loading the design and getting us in the holiday spirit.

Monday, November 30, 2009

Emma talking

Emma has been making progress with her vocalizations/talking, but it has been slow going. I find it especially hard - more so than Emma's delayed motor skills - that my two year old daughter has limited expressive language. For example, Emma doesn't point to let us know what she wants, cannot crawl to something and bring it to us to play with, etc. She does have outstanding eye gaze and smiles that are very expressive and we can usually figure out pretty easily what she wants, but I really want more. More than anything else I pray for, I pray that Emma learns to talk so she is understood by everyone.

Yesterday I said a special prayer to St. Theresa the Little Flower to help Emma talk. I believe we have a real connection with St. Theresa and that it is no coincidence that her birthday is the same as Julia's, her feast day is the same day as Emma's birthday, and she was born one hundred years before me. Every time I pray to St. Theresa I feel my prayer is answered.

Today Emma has been very vocal. She has been so quiet for the past few days that I was beginning to worry about her talking. Today was a rare day where we had nothing special to do and no therapies to attend. Emma and I decided to stay home and just play and I put a heavy language emphasis on our playing. Julia was in school and the house was quiet so we had uninterrupted play and Emma was so expressive! For the first time ever I heard Emma say I love you! It wasn't to me - it was to Finnegan - but I was SOOOOO happy to hear her say it and
I went and got my video camera.

While Emma did approximate the I love you sound again, she didn't say it nearly as clear as before I started up the camera. I kept the video running for a bit more of our playing and clipped together some other moments of Emma expressing herself and placed the video below. Way to go, Emma!

Sunday, November 29, 2009

Appointments three years running

Thanksgiving time seems to be a very busy time of year for us. In addition to all the wonderful family activities, we have spent the day before Thanksgiving at the hospital with appointments for the last three Thanksgivings!

Two years ago, when Emma was about 7 weeks old, we entered the hospital to have the ENT check Emma's ears before we boarded an airplane to Florida. Emma had an ear infection and we wanted to make sure it cleared up before the flight. While there, we also had the audiologist test her hearing - yet again! - to determine the level of hearing loss in her right ear. We left the hospital after a very long, very emotional roller coaster ride. We found out that Emma was deaf in both ears, not something we expected since previous tests indicated she could have hearing in her left ear. To this day, whenever I think of Thanksgiving I am transformed back to that moment in time.

Last year we had an appointment with the same ENT, Dr. O'Reilly, the day before Thanksgiving. This time it was a very happy visit. Emma had her cochlear implant operation the week before and we were seeing Dr. O'Reilly for Emma's post-surgical visit.

This year we had another long day at the hospital. Emma had her auditory-verbal (AV) hearing therapy and physical therapy in the morning. In the afternoon we had a follow-up visit with Dr. O'Reilly (see photo below), and an audiology appointment to go over the new Nucleus 5 device so we are ready at Emma's left ear CI initial stimulation on Dec. 7th. It was a very long day, but Chris and I were talking about how different it felt this year than three years ago.

Emma and Julia with Dr. O'Reilly

This year Emma celebrated her third Thanksgiving. And while life is very different today than we anticipated, we feel very blessed. Two years ago we found out about Emma's profound hearing loss diagnosis. In one week she will be *hearing* out of both ears with a cochlear implant. We are so thankful for cochlear implant technology. We are thankful to the people who developed them, designed them, and are in awe of those people that received the initial implants so that others that came after them could benefit from their experiences. We are thankful to the entire cochlear implant team at A.I. DuPont Hospital for Children. While this is still the beginning of Emma's hearing journey, we are glad that the journey has started.

Sunday, November 22, 2009

What does Emma eat?

Emma enjoying her birthday cake

One topic that often comes up with parents of children that are poor weight gainers is food, glorious food! I've already done a post on the challenges of getting Emma to eat and I'm so thrilled that she has recently gained a lot of ground in eating better! I think a lot of the changes we made to the diet along with all the oral motor exercises are a large reason for her improvement, so I thought I would share a bit more on this subject.

We like to provide a lot of variety in Emma's diet and do not have any real dietary restrictions other than keeping her consumption of whole milk to an absolute minimum to help with her reflux. Here is what Emma could eat on a typical day:
  • Emma's main drink is a mixture of mostly almond milk, a bit of unsweetened coconut milk and Metagenics Ultracare for Kids. This replaced the Pediasure that left Emma with constipation and reflux issues - since switching drinks we've pretty much eliminated both. I'm not recommending this for others, but if you do want to consider this drink please check with your nutritionist for the recipe.
  • For breakfast we do a variety of different things, depending on the day. We do smoothies on the days that we have to be out of the house quick since it gives her great nutrition and she drinks it without any problems. Other days she could have some organic baby cereal or oatmeal with an adder. This fall her favorite way to eat cereal is with apple butter or pumpkin butter mixed in. We also give her eggs, pancakes, waffles, meat, etc. for breakfast - basically whatever we eat I blend or mash it up so she can eat it easier.
  • For lunch she either has leftovers from dinner the night before or a YoBaby yogurt. This yogurt tends to be a bit runny so I add graham cracker crumbs or other food to give it a better texture for her to eat. I also usually give a fruit - mashed banana, applesauce, etc. I have recently started to add avocado or veggies to the fruit mixture.
  • Dinner is a variety of things. Emma is pretty happy eating what we eat after I mash or blend it up for her. A lot of the food I make is organic and I like to make recipes from the book First Meals by Annabel Karmel. I also make Emma some great stews. Kate did a guest post on Ellen's To the Max blog and her son's nutritionist offered up a stew recipe and I've recently made some for Emma and she just LOVES it! This stew recipe is a staple in my kitchen now. The stew I made for Emma today consisted of flounder, parsnips, carrots, sweet potato, turnips, onions, zucchini and parsley. I have to say it's really tasty and Julia even loved it! The nice thing about the stew is that I can mash it instead of pureeing it.
  • Emma is also showing great interest in more solid foods. She likes to take bites of peanut butter and jelly sandwiches from Julia, buttered toast, goldfish crackers, baby teething biscuits, thin-crust pizza, etc. It's nice to see her so interested in table food and giving her small portions of these helps her work on her oral motor skills so that she will be able to move to more table food in the future.
As for supplements, we are currently giving the following:
  • Super Nu-Thera with P-5-P liquid vitamin formulated specifically for brain development. I mix this into her drink in the morning.
  • Vitamin C (250 mg) powder is mixed in her drink with the vitamin.
  • Vitamin E capsule - I puncture the capsule and add the liquid to food or a drink and then I swallow the capsule shell to prevent waste.
  • Omega-3 Fish Oil for brain development and overall health. The old brand we were using had a really strong fish smell that was hard to get out of Emma's bibs and clothes so we switched to the Barlean's Lemon Swirl and it's delicious and has no smell! Everyone in our house takes this after dinner to help keep us all healthy.
  • PhosphaLine was just added to the mix this week. This is specifically to help increase Emma's speech and language development. This is not so tasty and I blend it in with applesauce so Emma doesn't mind the taste. I'm keeping tabs on how well this works as Emma's nutritionist said that we'll know if it's helping or not by the time the bottle is consumed to decide if this is something we want to keep in the mix.