Wednesday, January 27, 2010

*Almost* Wordless Wednesday

A photo selection from the Fall. No words are needed - Emma's face says it all!

What? Me? No way, no how. I wasn't checking any man out. That's my story and I'm sticking to it!

Tuesday, January 26, 2010

Squeal of delight

Remember when you were a child and you would swing on the swings and throw your head back and look at the sky and laugh and laugh and laugh? I love that!

Today, Emma laughed like that. Actually, it was more of a squeal of delight. We finished her 32nd HBOT treatment and were taking a food break before the long ride home. Right before heading home I decided to give Emma some standing time to see what she would do. I held her under her arms to help her stand but she was bearing most of her weight herself and holding her head up on her own. Julia was on the other side of the room and so I told Emma to go over and get Julia. And.............she started to move her feet in a stepping pattern! She walked all the way over to Julia with me holding her under her elbows helping her switch her weight from side to side, but it was ALL Emma on moving her feet in the stepping pattern! She has never done this before - never taken more than a step or two at the most. Today she walked across the room -with a bit of help - to go get Julia and she squealed with delight the whole time!

Julia and me were sooooooo excited for Emma! We decided to let her try again from a shorter distance and she did! Then, when Chris came home from work Julia helped me again and Emma showed him some of her stepping/walking motions. We are all very excited about this new development and hope that Emma keeps it up! We've been talking with her PTs about testing different gait trainers and her taking steps will be key to her success in a trainer. I'll try and take a short video of this and post it when it happens again.

For now I'm savoring the complete and utter joy that Emma imparted from her squeals of delight at her walking. And the joy that Julia showed while jumping and and down when Emma reached her. That made my week!

Sunday, January 24, 2010

Weekend happenings and rambling thoughts

This weekend went by in a blur. It seems that weekends always go by at warp speed, but this one seemed to go even faster! I had a fantastic day on Saturday with a true "day off." I don't really take any time for myself during the day - even on weekends - and Chris thought I should take some time off from Mommy duty. I had a gift certificate to the spa from my birthday and booked an appointment for the morning while Chris planned to take the kids to the museum. As I left, Chris told me to stay out as long as I wanted and knowing they had a fun-filled day ahead of them I didn't feel guilty about taking him up on his advice.

I do have to confess that it was a bit hard to leave the house when the girls were just waking up. That is when there is just so much work to do with getting the girls up, dressed, Emma's CIs on, breakfast...I feel a bit guilty saying that I was happy to drive off to the spa :-) I had a massage and facial and it was relaxing and then I went to the coffee shop for a bite to eat, a hot drink and curled up with my book. I'm knee deep in a great Alex Delaware novel and stayed there for a while reading. Then I hit the candy store where I bought some candy molds, pink and milk chocolate rounds, and some Valentine sprinkles and bags to make some treats with the girls. Since I had time and no one with me I stopped in a couple of other stores to browse and then camped out at Borders with my gift card and skimmed a couple of books and magazines and promptly lost track of time. When I came up for air I called home and found Chris was making a yummy chicken dinner and so I decided to stop by the grocery to pick up a fresh loaf of bread. I walked in the door at just about 5 pm and realized that I had been gone for the entire day - all on my own. And, it is still more than 3 hours less than Chris is away from home each day for work.

While it felt good to get away and spend time on myself, I felt guilty for being away for so long. I know it's good to recharge your system once in a while, but I also know how much work it is at home. Emma requires a lot of hands-on time and balancing that along with Julia's needs is challenging and it's so much easier with two people.

I know Chris feels guilty, too, when he takes time for himself. I never really felt this way with Julia (before Emma came along) and I'm wondering if this is common for parent's of special needs children or if we are an anomaly. There is always so much to do that you can never keep up. We are constantly reminded by well meaning people of all the things to work on with Emma. Of how far behind she is, of milestones missed. Believe me, my body knows that she is behind on milestones! Emma is getting bigger and heavier by the day and I am thankful that she is thriving but also looking forward to seeing her sit independently or move/crawl around on her own. But, the truth is I just love my girls and I love being Mom. I want to focus on having fun and playing games and not feel guilty at all. And while I think that I usually do a decent job at balancing between fun and therapy, there is always that little bit of nagging guilt in the back of my head that I'm not doing enough.

But in my heart I know we are doing more than enough - we are doing everything possible. And everyone needs a break, including little girls and Moms. And I'm thankful that we both got one this weekend.

Friday, January 22, 2010

Playing with cousins is the BEST

The girls and I spent the last two weeks at my sister's house. Their house is BUSY! Four children two adults and one dog plus friends up and down the block make for a lot of excitement. Much more excitement than my children have ever seen in our house!

Julia was in heaven playing with her cousins. In fact, when we came home for the weekend in between weeks she was a bit distraught that she had "no cousins to play with!" She was able to stay up later at night, watch movies with the kids, eat a non-fruit snack before bed and play musical beds each night. We played a lot of games and she made a friend with a child across the street that is almost the same age as her. We even went and saw the movie The Princess and the Frog. What more could a 4 year old ask for?

As for Emma, she made a huge amount of progress with her gross motor skills. She is such a busy-body that she didn't want to miss out on any of the action! She kept her head held high, stood in her stander without her tray for a long period of time most days, played Bingo with us (ok, she kept tossing everything on the ground but that shows HUGE progress on her part!), and sat in an Indian-style position unsupported for about 5 minutes at a stretch. This is all after she spent the day having 2 HBOT treatments, a bit of exercise in between each treatment, and a 2 hour ride in the car.

Oh, and Emma also didn't have much sleep with all of this because because I forgot her pacifier and decided it was time to wean her off of it instead of buying a new one. She only took the binky when she went down to sleep anyway, but she just LOVED it! Loved as in she would giggle like crazy when she knew she would get the binky in her mouth. I just love that giggle - it's so darn cute! So, why am I so mean to take it from her? I need more sleep and I think her binky was a big reason she wakes up at night. When she would lose it from her mouth she would wake up and cry for us to come back in the room and put it in her mouth. Her arms are not that advanced to be able to find the binky, grab it and put it in her mouth so she needed us to help her out which meant a lot of interrupted sleep for us (well, really, it was mostly me as Chris can sleep through crying babies). I was hoping that without the binky to start with she won't wake up and cry for us to replace it once it fell out. She wasn't a happy camper -ok, that's a huge understatement!- but eventually adjusted to bedtime without the binky. I'm keeping my fingers crossed that this will mean more sleep for everyone in our house.

The kids are all really into music and liked to put on the iPod and dance around. Emma was pleased as could be that they included her in this by pushing her all around in either her chair or stander to the music. It was SOOOO nice to see Emma included as just one of the gang. And, she KNEW it, too! She was loving moving around with the kids without hanging next to Mom all the time. Of all the kids, though, Emma was really sweet on Christopher and she kept talking like crazy when he was around. I heard quite a few consonants coming out of her mouth along with the vowels and I would say there were even 3 syllable sounds. This was all music to my ears!

So, we took two weeks off of standard therapy (and preschool for Julia) and got 20 HBOT treatments under our belt. Emma has now completed 29 dives and has 11 to go that we will fit in over the next couple of weeks while she participates in her standard therapy sessions. We'll commute to the HBOT clinic from our house making for a bit longer days but we know that it will be over in a few weeks and are praying that the time and money spent on HBOT will allow Emma to make great gains in her speech and motor skills. Time will tell for sure but we have noticed some changes in Emma since we started the HBOT (will post more on this in the future) and that gives us hope.

I think it did us all good to take the time off. It was really nice for me to spend quality time with my sister and her family. We don't get to visit together nearly as often as we would like and the extended visit really felt that we could just relax and hang out. I love seeing how independent and outgoing Julia can act when she is with her cousins. She is an amazing little girl and I really hope the next house we buy has some children her age nearby. Seeing Emma fit in as one of the gang - and how strong she was getting by trying to keep up with all the kids - did wonders for my heart. There were so many times that I was touched with how the kids played with Emma that it helped heal my heart a little more.

So, we had two weeks away from home and off from therapy. Thanks so much to the Nitka's for hosting us! We had a blast and will definitely make time for more sleep overs. As for "no cousins to play with?" Well, we all missed Chris and Finnegan and even though it's nice to get away, it's always good to be home again.

Thursday, January 21, 2010

Things that make me smile

We have this long drive to/from HBOT treatments for Emma and that gives me loads of time to think about things. My recent thoughts have been around all the little things that make me happy. Really, I'm a pretty easy gal to please.

So, what has me smiling lately?
  • Finding my favorite song on the car radio and singing it at the top of my lungs and hearing the girls in the back seat *singing* it with me.
  • A snow day that cancels school and we all get an extra day off to spend together as a family. Hot chocolate, a favorite movie, building a snowman.
  • Being curled up on the couch with a warm blanket, a cup of tea and a great book.
  • A full nights sleep without anyone waking up. Truthfully? This makes me absolutely giddy!
  • A kiss from Chris when he comes home from work.
  • Julia coming over to me just long enough to give me a huge hug and a kiss and then move on to play with her toys. Aaahhhh......the joy of impromptu love from your child!
  • Emma's giggle. It's contagious.
  • "Finding" the girls under the covers, in their forts, in the closet and hearing them laugh like crazy while I'm looking for them and then their squeal of delight when I find them.
  • The McDonald's coffee cup. I just tried McD's coffee in the winter for the first time and fell in love with the cup! It's amazing how this cup holds red hot coffee yet is not even warm in my hand. There is no need to use that annoying cardboard covering over the cup. How come they seem to be the only outfit that uses such a cup? I am now a repeat customer at McD's ;-)

What makes you smile?

Monday, January 18, 2010

Digital Girl

I've always had a bit of a fascination with the Amish community. I always thought I could see myself as part of that community. Most people who know me would think I'm a bit delusional with my self-assessment, but I really, really loved the Little House on the Prairie series and always thought I would fit right in back on the prairie. I think that is what fueled my long-standing interest in the Amish.

But.....the other day I had a conversation with a lovely Mennonite woman and I realized that I really like my modern day convenience. The woman and I were talking about Emma's deafness and the conversation turned to music, the gist of which came up to be that Rock and Roll music corrupts the youth. I was holding Emma, letting her burp after her drink, and I admitted that I actually love Rock and Roll music. I felt like a rebel and - I have to admit - it felt a little good.

I knew then and there that I would not fit in with the Amish community if I had to give up my music. And then I started thinking of Emma's cochlear implants and my washing machine, digital camera, computer, dish washer......well, maybe the Amish isn't really looking to recruit me anyway.

Sunday, January 17, 2010

Another new look

Do you love the new look of my blog? I do! Thanks so much to Tara for giving us a fresh new look for the new year.

I did the photos and some of the design for the header. Tara took my design and made it better! - plus added all the cool text and uploaded it to blogger for me. How lucky we are to have a friend like Tara! Thanks so much.

For inspirational stories, check out Tara's KIDZ blog. It's full of amazing stories and is a bit like "Chicken Soup for the Soul" on the internet.

Friday, January 8, 2010

The I word - Insurance!

Warning! This post is just one big rant.

I've been going through all our health insurance options lately. We have to choose Cobra or go under Chris' health plan. It's caused us a great bit of anxiety as medical costs are pretty crazy around here and are about to even get crazier. The problem is that neither of the options really fit our long-term needs. Cobra is super expensive, coverage is lower than the previous year's plan and it's only good for another year. The only thing attractive about Cobra vs. Chris' plan is that it does cover some therapy which would be handy from Oct - Dec. of this year when Emma ages out of the early intervention (EI) birth to age 3 plan. In EI all her therapies are covered by either insurance, the state, or a combination of both until she is 3. After that, Emma will get the services in the school system and I am skeptical that she will continue to progress as steadily as she is without some additional focused therapy.

As for Chris' plan, the downside is that it DOESN'T COVER ANY therapy for chronic conditions such as CP and has NO hearing coverage (don't even get me started on this one - when did hearing become a luxury????). Previously I would never have though twice about these exclusions, but Emma has CP and is deaf so you can guess that these exclusions just jumped off the page at me! Thank goodness that Emma has a secondary insurance for her disabilities that I am told will cover her ongoing hearing costs. As for the therapy, I have no idea what will happen come Oct. 1st. We might be able to successfully advocate for some private therapy coverage for Emma. I'm not sure how that will all work out, but I have a feeling it will. God has seen us through so much the past two years and each and every time I've gotten overwhelmed by the insurance stuff He has given us what we needed. So, I need to keep the faith that He will get us through whatever comes up.

The thing is, I know we have it better than many families in a similar situation. We live in a state that offers disability insurance for qualified children. In our area DE and PA offer this, MD and NJ do not and I have not idea how parents in these states pay for all the medical costs. We also were a bit older when we had our children so we already have a house and some savings, which many young couples starting off do not have. Not to mention that we are both well educated, speak English as our native language and have a good support network - all of which is very helpful in navigating the "system" and figuring our the insurance coverage when the coverage documents are written like an extended warranty sales pitch that covers everything until it's actually broken and then they bring out the fine print!

We finally decided on the best plan for us, but I still have some lingering insurance anxiety. Why? Do you know the cost to raise a child with multiple disabilities? Let me sum it up in one word: Staggering!

I've been following the health care reform in Washington as closely as my time permits. I've called all my representatives in D.C. multiple times and sent several email letters to each of them. I've sat in on town hall phone meetings on health reform. I even sent a message to President Obama directly. I've listened to many of the NPR discussions on this topic. I've never been this active on any political issue before and I believe that we have to take a stand as a nation and say enough is enough with our health care system and fix it.

Before Emma I might have been content to sit on the sidelines a bit more and I now think - shame on me! Why should I leave it to other people to decide how to change the system without providing my position? Our elderly know how to advocate for themselves, but who will advocate for our children? So many parents with children with special needs - that need to advocate for the health care reform - just don't have any energy left at the end of the day.

And who can make heads or tails of what the reform proposals are anyway? Not me. It seems to change as quickly as the wind changes direction. The one thing that is clear, though, is that something will change. And I hope that the changes will decrease my anxiety over health insurance for Emma! I certainly have given at least my two cents worth to my representatives in D.C. to try and turn my hope into a reality. Have you?

Wednesday, January 6, 2010


It's amazing how people look at Jan. 1st as a day to make a whole new change, when really it's only just another day. This year market the turn of a decade, so that does make Jan. 1, 2010 a bit more of a big deal than just any Jan. 1st and I have big hopes for this decade. I'm not sharing any resolutions or thoughts on the new year here, but I do want to share some of my recent thoughts on how our perspective changes based on our situations. After all, perspective really is quite amazing!

We've been doing HBOT with Emma and she has finished 8 "dives" already of the 40 total planned. For each dive, it requires us to drive 1 hour 45 min. in the car to the place, 1 hour in the chamber, feeding, diapering, etc. before we get back into the car and drive another 1 hr. 45 min. home. This has caused our already long days to seem longer.

Today and tomorrow we do not have a dive. Emma is participating in her normal therapy schedule this week before we take a two week break from her regular schedule to complete 20 HBOT dives. That means we went to the hospital for PT and AV therapy this morning and she'll have OT tonight resulting in sort-of free time from 11am - 4pm! It's amazing to me how much time it seems I've just gained to my day without traveling to/from HBOT treatments and it's really just what we would normally do on a typical Wednesday.

Before I thought Wed. was one of the hardest mornings of the week - getting the girls up, Julia to school and Emma to AV by 9am takes quite a bit of effort! But today I flew threw the day and feel like I now have some time to spare. Not much has changed except for my perspective on time. And that led me to think about how my perspective has changed on other things.

Like children. Before we had children we had an idea of what it would be like to be parents and how we would handle a variety of situations that I saw other parents in with some less than cooperative children. Ummmmm......hello???? Really? Our expert parenting ideas changed drastically once we actually had a child of our own. I think this is typical for most parents, so I'm not going to add much to this.

Like deafness. When we first found out Emma was deaf we were heartbroken. But, as time went on and everything unfolded I now think that deafness isn't so bad at all on the spectrum of things that can challenge your child and that if Emma was only deaf how easy things would be. When I talk with other parents with children who are deaf without other issues I know how hard they think they have it, but I just think that it sounds so easy. Of course I also talk with parents whose children are much more involved than Emma and I'm sure they think we have it easy. Again, perspective.

Like cerebral palsy. This is a hard one for me to articulate how my perspective has changed. The most striking change has been in my attitude. I do not take any movement, sound or milestone for granted. I celebrate each and every one and pray each and every day for total healing for Emma so that life can be easier.

Like support. Everything seems so much easier when you have support from others. They say it takes a village to raise a child, so just imagine what it takes to raise a child with special needs. Unless you are raising one I really don't think that you can fully understand what it is like, how little free time there really is available in a day.

Like doctors. I used to think they were experts on what is going on, but now know that they know some things really well but that most often what is going on doesn't fall into a nice neat little category. So, they are make educated guesses on what is possible, what will work, and how to do things. The good ones are up front about it and really listen to you. I found out it's best to do your own homework, do your own research, and go in asking pertinent questions instead of looking for someone to guide you through the process. When I was in grad school the first thing they taught us was when the professor was talking, they were presenting their version of events and you should really question what they are leaving out instead of what they are including. After all, class has a start and end time and can only cover so much and what is covered is what the professor thinks is important but you are missing out on the big picture if you don't do your own research and come prepared to ask questions. This is a valuable lesson and one that carries over into the medical community!

I could say a lot more on this matter, but for now I'm done and I'm going to go make good use of the time I have before Emma wakes up and we go pick Julia up for school.

Saturday, January 2, 2010

Happy Birthday, Julia!

My sweet, sweet girl turned 4 today! I just can't believe it. I remember finding out I was pregnant with Julia, going through the pregnancy, the delivery, the first few weeks at home like it was yesterday. I can play much of it back in my mind without a bit of video or photos to remind me of that special time in our life. So much has happened in our lives since Julia joined us and I know that I am a better person for knowing her. She teaches me so much about life, love and compassion for others on a daily basis. There is so much depth to this little girl of ours that I often find myself saying that she is an old soul. She is wise beyond her years and I find myself often forgetting just how young she really is - just 4 today! How can someone so young have had such a huge influence in my life?

Julia, you had a wonderful day today! You've been looking forward to your birthday since the summer and are so happy that it finally came! The thing you looked forward to the most was having your cousins spend the night at our house - TWO days, just as your requested! You had so much fun playing with Mary and Elizabeth and were happy to have everyone else join us in the fun for your party at home with the grandparents and with your friends at Joann Fabrics. You selected all the paper products for your birthday and, although you were leaning towards Hello Kitty again just like last year, you decided on a princess theme. We decorated a foam picture frame, played pin the tail on the donkey, frosted and sprinkled cupcakes and had a great time helping you make today special.

This year we saw you grow up so much! You started pre-school and became much more outgoing. You still love to swing and are so happy we now have a swing set in our yard and prefer to be pushed instead of working to swing on your own. You love playing "school" at home and are a fantastic teacher to Emma and all your dolls. Flash cards, books, dolls with blankets, and coloring/crafts are your favorite things to play with, but this year you also fell in love with Candyland and have become quite good at it along with learning how to be a gracious loser. You know how to write your name along with how to spell and write Mommy, Daddy, Emma, Finn, and puppy. You are so curious about the world and love to go on our outings to the orchard, museums, library, park and pretty much anyplace else we go. Cats are your most recent favorite animal. You love to dance and sing with music. You have a collection of CDs that you rotate in the CD player and dance all around the house and tease Daddy with some of your dance moves. Your favorite song is Just Dance by Lady Gaga and you also like quite a few of Pink's songs. When in the car you often request I play certain songs on my iPod and it's usually the songs from Signing Times and then Lady Gaga when I say it's time to switch to Mommy's music. You still watch Barney but have recently moved onto Caillou as your favorite show along with Signing Times and the Leap Frog series of videos. You frequently skip your afternoon nap to spend some alone time with Mommy or Daddy while Emma naps. I'm amazed at how much you remember - you often bring up stuff that happened more than 6 months ago and ask me if I remember when such and such happened. You have a huge heart and love your sister so much. We are so lucky to have you as a daughter. We love you so much, Julia Margaret, and are excited that you had a wonderful year and look forward to seeing you grow more this year.

Friday, January 1, 2010

Way too much fun

I'm having loads of fun with the photo editing skills I'm learning from some online classes. Tonight I was playing around with some new texture effects and thought I would show off the before and after photo. This was a photo of Julia at the horse farm where Emma rides. She was playing with the kitty while Emma was having her lesson. I decided to take this photo and transform it for an "old" look to match playing on the farm and thought I would show it off here. Enjoy!