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.

Thursday, November 19, 2009

Emma *thinks* about walking

We tried something new at physical therapy last week - we put Emma in a pacer/walker. It's something that I've been wanting to try out. Since she loves to stand so much I wanted to see what she would do if she was supported enough to take some steps independently. So, they put her in a Rifton pacer.

She looked GREAT in the pacer! She didn't cry at all and held herself up well. Although she didn't take any steps, she did try to take them. I'm told it takes a while for them to learn to move their feet in a pacer so we'll try it out a bit more. For now, I leave you with a video of Emma standing and *thinking* about walking!

Wednesday, November 18, 2009

Journal milestone update

I realize that it's been a while since I've logged an update since we have been busy and I've been too exhausted at night to create a post. But, I really need to capture what is going on with us so that I don't forget all the milestones. After all, this is my journal and I want to make sure I document this stuff so I can look back later on and see how far we have come!
  • Emma is a ROCKSTAR lately when it comes to speech therapy. No, she's not talking - yet! - but she is identifying items very accurately lately. We use a grooved platform communicator with message and lights (pictured below) and place three different objects on the platform, tell Emma what each object is and then ask her vocally without any American Sign Language signs "where is (object)?". Emma scans the three objects and then pushes the switch for the object. This is a difficult task for Emma because a.) she is deaf and hears with a cochlear implant, b.) it's hard for her to move her arms/hands to push the switch, and c.) we are constantly introducing new objects to increase her vocabulary. Yesterday, Emma got 10 out of 10 objects correct! There was a repeat (to try and trip her up a bit) included in the 10 and she got that accurate. She *almost* got two wrong, but self-corrected herself and selected the right object. This is proof that Emma is understanding everything we are saying - not that I needed it, mind you, but insurance companies like the documented proof to continue therapy services. Emma is a ROCKSTAR!!!!!!!
  • Emma is starting to make more difficult sounds. She has sounds that have two syllables and also makes sounds louder, softer, and longer. This takes a lot of breathing coordination and it shows that her trunk is getting stronger and letting her do more with her voice. Still no words, but I believe they will eventually come when Emma is ready.
  • Emma has sat independently! If you put her in an indian style sitting position and her arms on her legs and then take your hands off of her, she has sat in that position for up to 45 seconds! Wow! She is getting much stronger and I expect that her sitting will get better and better in a short period of time.
  • I completed my Photoshop CS3 online course and gained a lot of valuable information that I hope to use in the business I want to launch before the end of the year. I'm now taking a Create Your Own Website online course and find it good so far. I think this is essential for me to learn and I'm glad I found this course.
  • I was captivated by a new book that I started and finished the same day- Blue Sky July by Nia Wyn. The story is the journal of a mother raising a child with severe cerebral palsy. It is raw, it is at times heartbreaking and uplifiting, it is real. It shows how a child that is loved can triumph over the most extreme challenges and I highly recommend it.
  • Julia is so interested in writing and spelling lately. She has been writing her name for a while and has recently taken to writing Emma, Puppy, Mommy, Daddy and Finnegan. She needs a bit of help with these, but she just loves to write words. She also loves to make crafts. She brings a homemade present of picture to give to someone almost everywhere we go. Although she still loves watching Barney, she has started to prefer to watch Caillou. We are in the middle of the admissions process for pre-K for Julia and she had a play date at the school last weekend and blew us away with how much energy and excitement she had when we arrived. She couldn't wait to see the classroom and play with the other children and leave us behind. It sure seems like she is breaking out of her shyness!
  • Julia's soccer season - with Chris as the coach - is finally over. We didn't know that her games would be at 8am on Saturday's when we signed up. Julia is NOT a morning person and it was hard to motivate her to get up and out on the field by 8am so we are not sorry to see the season end. I think we'll stick to dance for a while. She has a passion for dancing!
  • Chris continues to enjoy running and is going to do a 10K (~6miles) this weekend. He has his sights set on running a 10 mile race in the spring and he is well on his way to that goal.

Thursday, November 12, 2009

Marshmallow Fun

Now that the weather has gotten a bit colder, we decided it was time to start roasting marshmallows with our portable fire pit. The girls love looking at the fire, Julia likes to eat roasted marshmallows that "don't have any crust at all," and Finnegan likes to try and get the sticks to chew. Here's to beautiful Fall weather!

Tuesday, November 10, 2009

Decisions, Decisions - HBOT or no HBOT?

It is very complicated to raise a child with special needs. While I want it to just be me, Chris and the girls making decisions for our family, the truth is that we need to bring in others to help us navigate our way through the cCMV, cerebral palsy and deaf diagnosis.

There are the various specialists, therapists, and alternative medicine practitioners that we consult(ed) over the last 2 years. I believe that the team we have on Team Emma is top of the line and wrote a bit about it in a blog post a while back. But, while I believe we have the best team working with us, I know that many of them know about the diagnosis at arms length - they do not live and breath it 24/7 like we do.

Throw in the complication of Emma having multiple (dis)abilities and the occasional conflicting opinions of the specialists and we realized quickly that Chris and I need to consult with the experts on our team and parents who live with similar circumstances to us and then chart our own course.

The internet is full of information and, while information is power it can also be confusing. There are loads of people trying to get you to buy into their philosophy or therapy. Many with testimonials from people who say how using *product* has changed their life.

At this point I feel that we have a great CORE treatment plan to help Emma reach her potential with the therapy she receives, the nutrition plan we are following and the careful monitoring of her progress. I also believe that the ancillary plan we have for Emma that includes craniosacral therapy and therapeutic riding have been extremely beneficial to her progress.

We are currently deciding if we should add a course (40 treatments) of Hyperbaric Oxygen Therapy (HBOT) since there are quite a few studies that have seen very positive results with HBOT for cerebral palsy. I have also talked to a few parents who highly recommend HBOT and have seen measurable results in their children after the treatment. We have also talked to members of Team Emma and there are conflicting views, so that makes it harder for us to make a decision.

For HBOT the convention is that the results are more measurable the younger you start so we should start NOW. The reason for our hesitation on this is the expense of the treatment (it is not covered by our insurance), the time associated with the initial course and how it would effect Emma. Since each child is unique, they respond differently to HBOT. There are children who see amazing results, some who have marginal results and some that have no noticeable change.

We are in the process of deciding on HBOT, so if you are reading this blog and have any thoughts on this topic please leave us a comment!

Sunday, November 8, 2009

On my mind

The one thing I continue to find amazing on our journey with Emma is how invested you become in children and families - most of those I have never met in person! - when you follow their blogs. I started reading blogs to find inspiration and found a whole lot more.

I've become invested in the children and families. I feel joy when they reach a much-anticipated milestone. I look forward to reading the updates the parents post. I pray for them during the difficult situations. I know others also feel this way about Emma and I find great comfort in that.

One family that I recently started following needs lots of prayers. Although I have never met Gavin or his family, he goes to the same hospital as Emma and his story has touched me deeply. Gavin Owens (click on his name to view his blog) is a gorgeous 3 year old that is losing his fight with mitochondrial disease. He is not expected to last much longer. Please pray that he finds peace soon and that his parents and 4 year old sister find the strength they need in this difficult time.

Friday, November 6, 2009

Cochlear Implant surgery from Emma's eyes

We're here! Aren't I bright eyed and busy tailed for 6:15am? I am not a morning gal, but I rose to the occasion - of course, there was lots to see in the waiting room and I had to check it all out!
Hi, friendly nurse. I'm not sure what you are doing to me, but I just love the attention!

Hey, Dad! That cool stuff they put up my nose makes you look sort of groovy! Hmm, looks like Finn Jr. has a nifty bracelet on his arm just like me. Are you getting one, too, Daddy?

Umm....I'm starting to get the feeling that something might be going on here. Why are all these doctors coming and going in here and writing on my head?

What the heck happened to me? I am NOT happy! I demand some extra attention. What can you do to make me happy again?

Ok, this is better. Entertainment. I just love all things digital!

And, FINALLY, a drink. Thanks, Mom and Dad for hooking me up. Now, I'm starting to feel like myself again.
Should I smile now or make you sweat a bit more?
Ok, I'll smile. I have a flat screen TV. On demand movies. Internet access. Room service. Chocolate milk. People catering to my every whimper. I guess it's not so bad here.

I LOVE TV!!! Why has it taken me so long to figure this out? Hey, don't take me away from the TV to eat! Oh, wait, what is this? The TV will move with me? Great! Disney channel, please! I don't care if the Phillies are in the World Series, Dad. I had the surgery, I get to pick what we watch on TV and I pick Tinkerbell.

Morning! Time to go home! Can I bring the TV with me? No????? Are you sure??? I'll cry??? Oh, you don't care? Darn. I guess I'll have to ask Santa for one.

We're headed home. My bandage is off - yeah! I have a balloon and some cool new toys. I'm ready to go. Did you pack the tv?

So happy to be home! Let's have a bit of fun and then a bath, ok, Dad?

Monday, November 2, 2009

Two Ears!

We've been working on getting a second cochlear implant for Emma since the spring. Well, really since her first implant last November. Emma had her right ear implanted with the Cochlear Nucleus Freedom implant on Nov. 21, 2008 and it was activated Dec. 10, 2008. After quite a bit of research and consulting with our doctors on the pros and cons of two implants we determined that we definitely wanted Emma to have bilateral (both ears) implants. Emma's cerebral palsy makes it extremely difficult for her to use sign language (ASL) and with all her challenges we believe she will benefit tremendously from having two ears to hear instead of only one. Our goal at the time was to implant her left ear within a year of the right ear, but had really hoped to have the left ear done in the spring '09.

Insurance is a funny thing when it comes to hearing. Depending on your plan, CIs might not be covered at all or they might cover only one ear or could cover both ears. The insurance offered at Chris' work does not cover CIs at all. The insurance that was offered at my work covered bilateral (both ears) CIs. Since we were covered with my insurance, we didn't foresee any issues with implanting the left ear and moved forward full speed ahead.

We started the qualification process at our CI center in the spring. Emma was approved for the second side since they would be able to demonstrate her ability to use the right side CI to the insurance company. By the summer we were on our way to have her implanted. Insurance approved the request. A surgery date was set of August 3. Then something happened. I had a bad feeling about the August 3rd date. A weird, let's not get it done this date feeling. I believe in listening to those feelings but, to be honest, it's feels strange to tell the surgical team that this is one reason why you need a new date! The other reason was that my entire family was out of the country on vacation in August and I just didn't know what I would do if anything happened. So, taken together, we decided to postpone the surgery date to October. At that time I did not know for sure that I would be laid off in July and have only a few more months for my insurance to pay for the surgery.

While we were working on postponing the surgery, we heard rumblings that Cochlear was about to launch a new version of the implant. We've heard that they are always working on new devices and new ones are usually available about every 5 years. This upgrade would be for the internal device implanted in the head and the external device that is worn on the ear and it was waiting on FDA approval. We decided to go ahead with the October date and would use the new implant if FDA approved, but we wouldn't delay the surgery date any further if the new implant was not available because we needed it covered by my insurance.

While working on renewing the insurance approvals for the new October date, we hit a snag. They wanted more information from the hospital. Then we found out the doctor couldn't do the surgery on the set date and wanted to reschedule it. We had to submit insurance approval again for the new surgery date. Each time you submit for approval you can be denied. And each time we requested the approvals there seemed to be a bit more hoops to jump through. Needless to say, I was a bundle of nerves through this whole process. The surgery is EXPENSIVE and we couldn't cover it out of our pockets and needed to have it done while I had my insurance. Finally, all the ducks lined up and we had a surgery date with insurance approvals for November 2! We just had to keep Emma out of the H1N1 swine flu way so she could get the surgery. Of course I also worried about that, but in the end it all came together.

Today, Emma had her left ear implanted with the *new* Nucleus 5 cochlear implant! She did great for the surgery, was quite irritable afterwards, and is finally enjoying a bit of rest. Our center provides two external implant sets/ear so that we always have a full set of spare parts and Emma won't have any *down time* from hearing should any piece need to go out for repair. We will get two sets of the Nucleus 5 external devices and they are compatible with the Nucleus Freedom Emma has implanted in her right ear. So, that means we can use Emma's Freedoms as the back-ups and use a Nucleus 5 device on each ear and Emma will have access to the latest technology in both ears! This is just wonderful!

Her activation date is set a bit later than normal so that representatives from Cochlear can be there for Emma's activation since Emma is the first Nucleus 5 recipient at our center. Activation is set for Dec. 7 and Emma will be hearing in stereo by Christmas. What a wonderful Christmas present for all of us!

(note: I'll update this post with photos later this week)

Sunday, November 1, 2009

Old McDonald

We've been working with switches with Emma lately so she can be more expressive. She loves singing songs and has recently taken to "helping" us sing Old McDonald.

On Thursday at speech therapy, Emma was helping us sing. She made the Moo sound each time at the appropriate point in the song - without having to hit the switch! - and also said O for each E-I-E-I-O. She was SPOT ON it! It was amazing to see. I was so excited to tell Chris about it and realized I should have taped it. Not to worry, we had another session on Friday as a make-up from a missed session earlier in the week.

On Friday I pulled out the video to try and capture Emma's Old McDonald to share with Chris. Friday's session was at 8:30am and Emma is NOT a morning person. She is usually more quiet in the mornings and Friday's rendition of Old McDonald was much spottier than on Thursday, but she still participated in the song. I would have been thrilled with this a couple of weeks ago, but since I've seen that she can do so much more I'm less impressed now (crazy, isn't it!). Here's the video from that session. Oh, and at the end I thought I had stopped the camera but I didn't, so just ignore the last few seconds of the video clip.

I'll work on getting a video from a Thursday at 11:30am session on here in the next few weeks so you can really see how good she participates in the song. It's SOOO COOL to see!