Wednesday, July 29, 2009

Addressing the To Do list

Who knew that having one person not working outside the home would make life so much easier? I mean, I knew it would be a bit easier when I stopped working since we wouldn't have to juggle schedules as much but I had no idea that it would be a LOT easier.

Why is it so much easier? I have time available to attend to the important items that might not get addressed in our desired timeframe if we were both working, which helps keep my stress level down, and we even have time for more plain, old-fashioned, FUN.

Here is a snapshot of what I've been up:
  • This week Emma's CI acted a little quirky and required 2 unexpected trips to see her audiologist as well as multiple phone conversations. This could have required a real juggling act if both of us were still working, but since I was home it didn't.
  • We're in the process of doing some estate planning and will generation that is a bit trickier to execute when you have a special needs child. I had the time to research what needs to be done, check with a few parents in our similar situation to find out who the experts are, and even schedule our initial consultation.
  • I can PLAY with the girls at night. I don't have to work after putting in a lot of hours working as "mom/therapist" during the day. It is so nice to relax and play with the girls and have more family time together.
  • Enrolled Julia in swim classes for this session and attended the first lesson. She loves swim lessons and we were lucky to find the perfect date/time for our schedule!
  • Researched and followed-up on alternative approaches I think Emma will benefit from. I've been trying to get to this for a couple of months now and, with the extra time available now, I've completed it in a week. The results? I have a phone apt. this week with a top researcher from the University of Delaware that wants to help facilitate a comprehensive evaluation on power mobility for Emma (this man is doing amazing things with infants/toddlers and robotics) and Emma has a craniosacral therapy appointment scheduled for next week.
  • Put in some time researching the internet business I'm trying to start, registered the domain name and did some more research for the business plan. I have a LOT more work to do here and need to put more time into this as it is a high priority for me, but I know I'll have more time to devote to this next month when our babysitters are back from summer break.
  • Reconnected with my contacts in Linked In (a professional networking site) and partially updated my profile. I still have to complete my updated resume and a few other items so that when I'm ready to jump back into the job market I have everything ready to go
  • Found time to measure, assess and order an appropriate ramp for our minivan to load Emma's stroller. This will save a lot of wear and tear on my back from lifting her stroller in/out of the car. Her stroller is AMAZING, pushes like a dream and we love it (even if there are a couple of minor details we would change), but it is quite heavy to lift and I'm looking forward to getting the ramp.
  • Emma's been using a communication board with her speech therapist that is the best of all the boards we've tried. I was able to contact the Delaware Assistive Technology Initiative (DATI) and found that they have the same communication board that we can borrow - they have reserved it aside for us and we are picking it up on Monday. We've borrowed items from DATI in the past and it is a great FREE resource for DE residents.
You'll notice that I didn't say I'm a stay at home mom. That's because our life does not lend itself to stay at home - I'm much more a mom on the go. I'm busier all day long *staying at home* than I was at work. I often don't get a chance to eat, drink or go to the bathroom when I want like I could at work, but I sure love the smiles, hugs and kisses that come with the territory.

Wordless Wednesday - Look who's standing!

Hey, check me out - do you see me standing!
We just Emma's stander this week - the Leckey Squiggles and it's fantastic! We tried a lot of standers before we found this one that fits her small frame to a T. As for Emma's review of the Squiggles? Well, the pictures say it all!

Monday, July 27, 2009

Dentist Visit

Julia had her first dental visit last week. I called for an appointment and they put her in for the next day thanks to a cancellation. This gave me pretty much no time to prepare her for the visit. So, I was pleasantly surprised to find out they talked about yellow teeth and had a demonstration on brushing the yellow teeth to get them white at her school the same day I made her appointment. Talk about timing!

When I broke the news to Julia that she was going to the dentist, she made her voice sound so small and cute and said "I don't want to go to the dentist." I started talking up the dentist and told her how much fun it is and that she would get a great gift after her visit - REALLY hoping they still did the child jewelry thing since I forgot to check when I made the visit. This still didn't win her over and I let the subject drop because I couldn't help but laugh at all the protests she put up about getting her teeth checked.

After making a big deal about visiting the dentist with everyone we came in contact with, Julia came willingly to the dentist and she did great! The dentist was new to me since we had to switch based on the new health plan. Julia (and me!) was happy to see tvs in both the waiting room and treatment room so Julia watched cartoons while waiting. She wasn't sure about getting her teeth x-rayed, but she did pose for the photo and the person taking the photo was thrilled with this. Apparently, not many children Julia's age will let them take the photo, but then not too many have Julia's temperament, either. She let the dentist count her teeth and she commented on how well they looked and told us both to keep up the good work (I appreciated the kudos!). Then, she had her teeth cleaned with bubble gum flavor paste- of course! - flossed, and a fluoride treatment applied before she got to pick out her new toothbrush and toothpaste. Julia loved the way her teeth felt and flashed her pearly whites at everyone who asked about her visit. When it was all over she got two cool gifts - a dinosaur ring and a weave bracelet.

Waiting for the dentist
After Teeth Cleaning
Afterwards we went out for breakfast at a local bagel shop. Julia loved all the special attention she received and I was pleased that there wasn't anything wrong with her teeth to make the experience unpleasant. Since her visit, Julia has been asking to brush her teeth more which is a welcome change from her giving me a hard time about brushing. She loves her new toothpaste and brush and is even looking forward to her next visit in six months.

Thanks to the entire dental staff for a successful visit!

Sunday, July 19, 2009

Picture Perfect Day

Saturday was one of those days where the weather was perfect. I mean PERFECT! The type of day that comes along only a few times a year. So, naturally, Julia wanted to go to the museum. Not to the pool, not play outside, but go to the museum that we could go to on a terribly rainy day. 

We have an annual membership to the Delaware Museum of Natural History. It's the perfect size and age museum for the kids and usually pull out our member pass on not so glorious days. Julia was talking about going to the museum all week so it shouldn't have been a surprise that it was our destination on Saturday.

Julia even made a ticket to get into the museum out of her paper.  She loves to use her scissors lately and cut out some white paper and folded it up in the form of a ticket.  When we got to the museum she had a huge smile on her face when she gave it to the woman behind the counter.  The woman was so nice and pulled out her stamp pad and stamped her ticket with a ladybug and gave it back to us so she could use it again at her next visit.  

Once in the museum we thought Julia would want to take her time looking at all the fun exhibits.  We were very wrong.  Julia literally pulled my arm and dragged me through the museum at record speed and then Chris and I insisted we take a break and eat our lunch.  

Since the museum has a beautiful outdoor area that we haven't been able to take advantage of (remember, we go there when it's rainy!), we decided Saturday was a perfect day for a picnic lunch.  The girls loved eating outside, but I think Julia loved running our trash back and forth to the trash can even more!  

After lunch we checked out the gardens and I was so happy to have my camera with me since the flowers were just gorgeous. The girls posed for some photos amongst all the "running" around on the grass.

Julia didn't want to stay outside long and got tired of posting for photos pretty quickly and Emma was looking a little tired of the sun, so we went for another tour of the museum and landed into the interactive room.  We looked at the fish, we played with the exhibits and then checked out the books.  I decided to read a book to Emma and Julia picked out a book to read on the chair next to me.  I was animated, I signed the entire book, the other kids in there loved me (who am I kidding, there weren't any other kids - they must have all been at the pool!) but Emma had no interest in me at all!  She only had eyes for Julia.  So, I stopped signing and closed the book and we all listened to Julia.  It was a perfect day!

Wednesday, July 15, 2009


I've been thinking a lot about acceptance. About it in general and about it specifically in terms of Emma. Having children changes your life. Having a special needs child changes you.

I had never thought too much about children with special needs before Emma other than the standard pregnancy worries and the thoughts/prayers I would say for others with special needs. I didn't go into any nurturing profession like nursing or teaching that would expose me to the real world of raising a special needs child. So, when I finally realized that the road ahead for Emma and our family was more than we originally thought, I have to say that I felt unprepared.

When I think of my precious little girl with the easy smile, the glint in her eyes, the giggle that makes you melt, I think that my life couldn't get any better. That our family is perfect and just as it was meant to be. But, when I think of all the therapies my baby has every week just to try and get her muscles to move or enable her to communicate to reduce frustration, I want to cry for all the play dates, park outings and field trips she is missing.

Recently I've read some blog posts from parents who are clearly at peace with their child's diagnosis. I would love to say that I am there, but I am not. I struggle, some days more than others, to enjoy the moment rather than worrying about the future. I struggle with the stress of managing the health insurance struggles, the appointments, feeding Emma (oh, the feeding, that deserves a post all to itself!), feeling like we're not doing enough, feeling like we're doing too much, wondering what effect this will all have on Julia and Emma later in life, etc. You get the point here.

Lately I've been making an effort to spend most of my time living in the moment and accepting that we are doing the best that we can each day to nurture our girls to become strong women. I think of all the time we spend together as a family and all the adventures we undertake together. I think that I've learned more in the last 21 months than I learned in all of my 35 years and that I now know the true meaning of unconditional love. And I know that acceptance will come in it's own time. Just like I know that Emma will exceed all of our expectations...in her own time.

Tuesday, July 14, 2009

Darn bees

I've NEVER had a bee sting in my life until this summer. About 3 weeks ago I was driving with my window open in the car. A bee actually flew in the window and stung my arm. It darn near ran me off the road and had me saying a few words that I wouldn't usually say with my Dad in the car. Then yesterday I was putting some trash into the bin when a bee stung my foot. Ouch! Two times in less than a month. And, it appears I have an allergy to the stings since I swell up for several days after.

Here's to hoping that's the end of the stings for a while!

Sunday, July 12, 2009

Summer Vacation

Our beach bums

Aren't these photos precious!!!!

The swings were a hit at the park!

We packed up and headed to the shore for a week of vacation and it couldn't have come at a better time! I'm not much of a vacation planner and tend to take them on a moment's notice, but it's not as easy when you have a husband and two children as well as GOBS of stuff for the children along. So, recently I've conceded to go on some vacations planned more than a couple weeks in advance.

Chris planned this month's vacation to the Jersey shore back in March, so it's nice how the timing worked out - we left right after my last day of work from a career that spanned 13+ years at my employer before I was laid off. So, for me it was nice to head out of town to relax with the family. And, this got me thinking that this isn't our only recent pre-planned vacation that might not have happened if not planned well enough in advance. Back in Dec. 07 we headed to Orlando, FL right after we received Emma's profound hearing loss diagnosis. That trip was a brief calm before the storm and since that trip we've embarked on a crazy new journey of cochlear implants, cerebral palsy, insurance disputes, and a lot of therapy so it's nice to kick back our feet a bit.

This year we rented a second floor house in Ocean City, NJ and were pleasantly surprised to learn that our deck had a great view of the fireworks for July 4th. What a treat! The fireworks were beautiful and both Julia and Emma enjoyed watching them and then didn't put up much of a fight about going to bed right afterwards.

We didn't have any real plans for the vacation and it was so nice to fill our days with what fancied us that day. We spent a few lazy days at the beach, an afternoon at the zoo, a morning at a fantastic park that had most of the play stations available to those in wheelchairs (YEAH!), took a lot of walks, cruised on a sunset dolphin boat ride, enjoyed the boardwalk scene with the rides, Chris went for a few 5 mile runs, and we even got a chance for just me and Chris to go on a dinner date. Both sets of grandparents joined us for some portion of the vacation and the girls were in their glory with everyone around.

Aren't we lucky that the girls grandparents were able to help us enjoy our vacation!

It was so nice to just relax. Our weeks are so busy that it is nice to take time out to recharge our batteries. I read a book. Chris went for some runs. Emma got a much-deserved break from therapy. She works SO hard every day and this was a chance for her to just relax with Mommy, Daddy and Julia. The only therapy we worked on while on vacation was her acknowledgement of a certain 6 sounds (called conditioned ling sounds) since we are hoping she will remember this for a good CI programing session planned for the Monday after our vacation. Julia took a break from school and camp, but she hosted circle time and group time each day. We all took turns as Miss Julia's helper :-) When told on Friday that we were going home the next day, Julia jumped up and down shouting YEAH, do I go to school then? She calmed down a bit when we told her she had to wait until Monday, but was excited again when she found out that we would pick Finnegan up on Saturday. It's a good thing I wasn't expecting tears from her that our vacation was ending!

Julia got her hair wrapped on the boardwalk.

The boardwalk was a HUGE success with the girls. Julia loved the rides and the ice cream. Our last night there, we did some shopping on the boardwalk and then Julia went off for a Daddy/Daughter event of mini-golf and won a free game! I'm sure we'll be back to collect on it. Emma loved all the people watching on the boardwalk and also enjoyed some rides. We were able to take her on quite a few and Chris and I rotated taking the girls on the rides. Emma loved the wind whipping through her hair on the rides and it seems that she is a bit of a thrill seeker! She also caused quite a stir on the boardwalk. Chris designated her a local celebrity as so many people walking by her stopped to wave or talk to her. Emma's gorgeous blue eyes and winning smile just draw people to her.

The rides were a huge hit with the girls!

Now, I'll leave you with a photo that tugs at my heartstrings - Julia loved holding Emma's hand while walking the boardwalk. Sometimes Emma didn't want to hold hands and Julia didn't appreciate that one bit! The conversation between them on these occasions made me laugh out loud. How lucky they are to be sisters, how blessed we are as a family!

Friday, July 3, 2009

Our recent adventures

We've been a busy bunch lately. The weather has finally started to act like summer and we've been spending a lot of time outside enjoying it!

Here are things we've been doing recently:
  1. I finished up my last month at my job and now officially unemployed. I'm going to take a bit of time to relax and enjoy the summer before I jump into something new.
  2. Julia started camp and LOVES it. Every Tuesday they have a field trip and last week she went on the school bus to the Can Do Park. The highlight of the trip? The school bus ride, of course! She's been wanting to go on the school bus ever since she realized what they were - with a school bus stop in front of our house, we have to watch and wave to the kids every morning.
  3. Chris finished his second 5K run - the Victoria Flick Bubble Run/Walk. The proceeds go to help purchase durable medical equipment for children, which is a cause we align behind! Chris shaved more than 4 minutes off his previous 5K run time and came is 3rd place for his age group and 17th place overall! We are so proud of him!
  4. Emma continues to be a shining star. Every night she loves to stand on our lap and walk up our chest while she laughs like crazy! She is also very, very close to sitting unassisted. Her fine motor skills are getting better and she is now grasping objects between her thumb and forefinger. She has also pointed with her forefinger once or twice! Water continues to be her favorite thing to play in, and with the nice weather we've been having she's been spending quite a bit of time splashing in the pool.
  5. Finnegan will celebrate her 7th birthday on July 4th! Happy Birthday, Finnegan! We love you for the joy you bring to all of our lives, the way you let the kids walk all over you without any protest, and the delight you find in fetching the ball incessantly!