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.
Monday, November 30, 2009
Sunday, November 29, 2009
Sunday, November 22, 2009
- 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.
- 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
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.
Wednesday, November 18, 2009
- 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
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
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.
Labels: alternative therapy
Sunday, November 8, 2009
Labels: random thoughts
Friday, November 6, 2009
Labels: cochlear implant
Monday, November 2, 2009
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.
Sunday, November 1, 2009
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.