Curls!

My friend Heidi gave Natalie a curly hairdo today!   My mom pointed out that Natalie has the hair that I always wanted as a child - long, blonde and curly!  Notice in the pictures that she can't decide whether she wants to read the book or watch the show playing on the ipod.  Love my little cutie!

All that's missing is the popcorn

There's not much that's as fun as watching a Barbie movie with friends Aliya, Liam, and Kiersen on a Saturday night.

Helpers

Ronan and Natalie helped Cook make her bread tonight.  They're such good little helpers!

Little Turkeys

Aunt Lauren made the 3 girls these adorable turkey shirts and tulle skirts to wear yesterday for Thanksgiving. Thanks Aunt Lauren and your love of Pinterest!

Natalie update Part I: School

So, here it is.. the first part of a long overdue update about Natalie's life as a FIVE year old!  I still have trouble believing that my once tiny little baby is so old now.  Definitely not a baby anymore, she looks so tall lately and she doesn't have any chubbiness left at all (not that she ever really had much!)

Obligatory first day of school pic

Natalie is now in her third and last year of preschool.  She is once again in a different school and I'm pretty happy with that decision so far.  She is now able to take the bus to school and she seems to really enjoy that.  More importantly, she appears to be enjoying school a little more than last year, evident by the fact that she's never cried or totally resisted walking into the building as she has done in the past AND by the fact that she cheerfully climbs on the bus each day.



Natalie's bus

 I had a long parent teacher conference last week and her teacher does have some concerns, which are the same as the ones she has had since the beginning of the year, namely fatigue and lack of attention.  Her teacher's initial suggestion was to try moving Natalie to the AM class to see if she would be more alert and attentive.  I've given this some serious consideration but I honestly think that being tired is not the main issue and I am not sure that doing this will yield any significant change.   Natalie tends to appear tired or zoned out when she gets bored.  My thought is that maybe she's getting a little bored and frustrated in school.  Due to her motor skill deficits she simply cannot participate in all the classroom activities in the same way that a typically developing child can and it's evident that Natalie's becoming more aware of this as she gets older.  She needs some help with most classroom activities like cutting, pasting, coloring, etc and I think that doing these activities with help is simply not very interesting to her.  We've been working on coloring more at home and her attention for this activity is pretty short.  It takes A LOT of concentration for her to even hold a crayon or marker in a way that allows her make marks on the paper let alone have any sort of precision with it.  She is definitely making progress but it's slow. 

Don't let this look fool you, she always knows what's going on..

The good news is that Natalie has a very caring teacher who is very interested in making any accomodations necessary to help her participate fully the classroom.  The school staff has been very interested and good about incorporating Natalie's use of the ipad speech program(Proloquo2go) in the classroom.  She uses it at circle time especially to participate in singing, saying her name, and talking about the days of the week and the weather.   The best thing about her teacher is that she really listened and believed me when I told her from the beginning that Natalie's cognitive skills are typical for her age.  Natalie knows all her colors, shapes, letters and some sight words.  As we discussed at the recent conference, Natalie came into the school year having already mastered several of her IEP goals, and we are going to work over the next few weeks on coming up with some new goals to replace these.  Her teacher wants to focus more on "social" goals because Natalie does need some improvement in this area.  She's not always interested in interacting with other kids in the classroom and her lack of speech only makes it more difficult.  I was torn during this discussion because I would like to add additional academic goals while her teacher feels that this is not necessary as Natalie is already demonstrating age-appropriate cognitive skills.  My thought is that it wouldn't hurt to have Natalie get ahead academically because there will likely be a point in future years as academics become more challenging where her motor skills will interfere with her academic progress.  So, it seems that getting ahead now would only be a benefit down the road.  Does anyone have any thoughts on this?  I'd love to hear other opinions, especially from those of you who know Natalie or have experience with your own child(ren).   

Finally, I can't talk about school this year without commenting on Natalie's therapists.  I have been very pleased both last school year and this year with the dedication that all of Natalie's therapists have shown.  They have been so helpful, willing to communicate with me about her progress, and open to brainstorming ways to improve Natalie's ability to participate in the classroom.   I will say that the school PT initially put me off with immediate talk of having Natalie evaluated for a wheelchair.  There may be some future issues related to this but I'll save that for another post.  Overall, I think everyone is working toward the most important goal - to make sure that Natalie has a successful school year!  

Just off the school bus!

Please, just a short nap?

Some Friday mornings, like today,  PT is the last thing that Natalie wants to be doing. 

Bobbi had Natalie working hard today and by the time her session was almost over, Natalie just wanted to take a nap instead of doing exercises on the big red ball! 

The Two Olivias

Happy girls!

                                               
Natalie and her friend Aliya are both going to be Olivia for Halloween.  For those who are not familiar with her, Olivia is the star of Natalie's current favorite books and TV show.  It was my creative friend Heidi (Aliya's mom) who came up with the idea but the fun really started when we decided to make the costumes ourselves.  We did it, but not without a significant amount of help from my mom.  So thanks to Heidi's creativity and my mom's sewing talent, we were successful!  I will take credit for creating the pattern for the ears though - we are fortunate that I could at least do that because if we'd had to go with Heidi's "ear" pattern..well, you don't want to know!

My little cowgirl

Natalie has been reunited with her favorite horse, Shorty B, for the fall session of hippotherapy. She did a session this summer also but I neglected to post those pictures (will try to soon). Margie noticed that she is stronger and seems more grounded when walking than she did even a month ago. Yeah Natalie!

Natalie's Birthday party

Natalie had her 5th birthday party a few weeks ago and it was perfect.  Quite a few good friends were able to join our family to celebrate 5 years of having Natalie in our lives.  The bounce house that Howard rented for the occasion was a big hit with the kids.  As usual, everyone was so generous and Natalie was given many of her favorite things (books, toys and clothes).  I think she loved her gift from Mommy the most though.. Olivia's family car.  She's been carrying around various members of Olivia's family with her everywhere she goes ever since.

Where's my Washington Post?

I think that Natalie's potty time today would have been more successful if she'd been able to read her talented Uncle Jason's first article for the Washington Post while on the potty! What a talented Uncle Natalie has!

I never get sick of seeing her do this--

Natalie still loves her books.  She's usually throwing them at my head until I read them to her but occasionally I find her quietly reading by herself just like this and I love it!  

Natalie and her Bop

Natalie adores Bop. Lately, when visiting Bop and Grandma's house she spends most of her time standing next to Bop's chair or sitting next to him just like this. Bop has always had a special connection with his grandkids and now he does with his great grandkids too!

Castaway Bay and Cedar Point

Recently we went on a short weekend trip to Cedar Point and Castaway Bay (indoor water park/hotel).  Howard and my mom were so generous to both organize and pay for everyone.  We had a really great time with family and friends!  On Friday night we spent some time at the indoor waterpark.  Natalie wasn't into the slides (I kind of made her go down 2 but she didn't really love it).  She did like splashing around and walking around with me in the shallow water area.  Here are a few pictures than Ilan snapped of us:

 When it was no longer fun to play in the water, she watched videos with Kiernan (poor Keg couldn't get in the water because of her cast).

The kids were so tired by Friday night but they were ready to go to Cedar Point bright and early on Saturday.  As I posted previously Natalie's favorite ride was the roller coaster (the Jr Gemini) but she also enjoyed some of the more tame kiddie rides like the bumper boats. 

Yelling at another driver? 

Serious driver!

I didn't get pictures of her first few rides because my mom and Monet were nice enough to take care of the kids while the other adults were riding the Millenium Force before the line was too long.  It ended up being my only adult ride of the day but it was so worth it!   

Happy 5th birthday Natalie

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Natalie is 5!

5 years ago today at 8:20 pm, Natalie Elizabeth was born.  She was so tiny and fragile, not breathing, and not even able to open her eyes.  Statistically she had a 50/50 chance of survival. 

But here she is today, on her 5th birthday, healthy and happy! 

Roller coaster!

My brave girl recently went on her first roller coaster ride and LOVED it(in the front car no less)! Instead of getting scared like I was worried she would, she smiled and giggled the whole time! Thank goodness my friend Heidi is still the only one that I have made cry by taking on their first roller coaster ride (sorry Heidi!)

Natalie's first drawing

This is the first time that Natalie's spent any significant amount of time coloring a picture. She's getting much better at holding a marker in a way that allows her to actually draw on the paper. For the longest time she just couldn't coordinate her hands well enough and she would give up quickly. Interestingly she used only her left hand for this picture. She tends to be better with her left hand when using a spoon too so she may just be a lefty.

Bouncing on bridge before hippotherapy

Tonight was Natalie's last night of summer session hippotherapy. More pictures will be posted soon of her on her favorite horses, Shorty B and Apache.

After stitches

Natalie fell again last night and had to get stitches in her chin for the 6th time.  The last time was on June 5th and I don't even think I remembered to blog about it since it's becoming just another regular event for her.  This one looked particularly deep but she didn't even cry(although I almost did when I saw it).  We were at Cook's house for dinner when it happened so we decided to try out the new Urgent Care by her house that just opened that day!  It was a good experience overall and I think I'll take her there again if needed.  Considering that they are just a general urgent care I was very impressed with how they handled a child.  Natalie actually did much better than she normally does at Children's Hosp ER and the wait time was shorter (in and out in under 2 hours!) However, she did not hesitate to wave goodbye to the nurses when we left!  

Before stitches

July

July 2009

I can't believe it's nearing the end of July! The summer is going so fast and Natalie is getting close to turning 5!  I still have updates in my head dating back to May or earlier that I plan to eventually post.

This week, however, I was at work and found myself looking at this 2 year old picture of Natalie (above). It's one of my favorite pictures of her so I've left it up on my desk at work even though it's outdated. Seeing it over the past two years has made me alternately happy and sad. It was taken on the Fourth of July weekend in 2009. The day I took the picture was a happy day and it was at a time when I was starting to feel more positive and confident that our lives would be fine, and that Natalie would be fine, despite her Cerebral Palsy diagnosis. Natalie has had a love for books since a very young age. On the day of this picture I found her during a quiet moment, "reading" her new Backyardigans book. I remember thinking that she looked like such a big kid and feeling so proud of her.

Up until that year, July had, for the most part, been a happy month. As a child, July meant no school and fun summer activities. I got engaged in July of 1997 and was busy planning my wedding in July of 1998. It was in July of 2006 that I was finally pregnant and an ultrasound revealed that both a boy and a girl would be arriving later that year! So, in July 2009, about a week after that picture of Natalie was taken, I was completely unprepared to be told, by the man who I had been with since we were both teenagers and married to for 10 years, that our marriage was over. For a long time after, that beautiful picture of Natalie just made me sad because it reminded me that one minute you can think everything in your life if going just fine, or even better than fine, and a week later everything can totally change. What I realized this week is that I am glad that I never took that picture down. I discovered that I can look at it again and not feel sad anymore. While it does still remind me of changes in life, I know that change, even unexpected and unwanted, can turn into happiness. This year, Natalie and I are having a very happy July and I expect that there will be many more to come.

Happy Natalie

Heather took this cute picture of Natalie recently. That Aunt Hez is soo funny!

Josie Renee

I am so behind on blogging, but I wanted to be sure to document the birth of Natalie's new friend here on the blog. On June 16, 2011 my friends Amy and Brian finally had their much anticipated baby! Josie Renee is a beautiful and healthy girl. I am looking forward to my Wednesday nights in Columbus when I get to snuggle with this sweet girl. Amy and Brian are already proving to be great parents. I definitely owe them a lot of hours of babysitting time from a few years ago when they helped me out so much with Natalie (and kept me sane by visiting when we couldn't leave the house for months that first winter)!

Go Dragons!

Cook took Natalie, Carter, Kiernan and I to the Dragon's game last night. The kids had so much fun and were so good! They cheered for the Dragons, ate some pretzels, and took turns driving the fire truck(my brother works at the fire station across from the stadium and was working last night). The weather was perfect while we were there and it started raining right after we left.

Denied!

On April 20, I attended a state hearing appealing the second medicaid denial of her AAC device (the Vantage Lite communication device I've talked about in earlier posts). The hearing itself was an odd experience. It was all done over the phone as a teleconference. It was myself (and my mom), the Hearings Officer, 2 representatives from medicaid, and Natalie's former SLP Cheryl. I was not impressed with the Medicaid representatives - their attitude was on the nasty side. Cheryl did a GREAT job justifying why the Vantage Lite IS the most appropriate device for Natalie's communication needs.
Unfortunately, I received a letter in the mail on Thursday saying that the Hearing Officer upheld medicaid's denial decision. The reason? While Medicaid agreed that Natalie does need a communication device, they have determined that a "lower cost alternative" would meet her basic communication needs as they now stand. The problem is that according to her current and past SLP, Natalie would likely outgrow the device they are recommending within a year (if she hasn't already) and Medicaid only pays for a SGD (speech generating device) once every FIVE years! So she will have to use the one that they approve now until she is almost 10. Imagine how much her communication needs will change over that time period. I am so frustrated!
So, what are the options? I made some calls on Friday but have not heard back from several people I contacted so I am not positive yet. I'm pretty sure that I can appeal this denial and/or continue to submit documentation trying to get Medicaid to approve the Vantage Lite and I will probably do this. However, I hate so waste even more time that Natalie could be learning to communicate. She has an ipad with proloquo2go software on it but this is just not working that effectively for her due to access issues (touch screen sensitivity and motor skill problems make it frustrating for her to use the ipad very effectively right now). I can try to raise the money myself to just purchase the Vantage Lite but the total cost is $7,900 so that would not be an easy task!
Here's a video of Natalie's reaction when I told her that she would not be getting the Vantage Lite yet:




Ok, not really. This video is from February on a day when Natalie was not in a good mood. I think that it shows how important a communication device is for Natalie. She gets frustrated, like all 4 year olds do at times. The difference is that she cannot TELL anyone why she is sad/mad/hurt. It's frustrating for me but I can only imagine that it is 100x more frustrating for her to not have a "voice".

On a lighter note, she has been so funny lately with her letters. I can tell that she is so proud to be able to show me what she knows. She likes to get the "M" off the refrigerator and bring it to me. She does this at random times during the day, I think because when we practice her letters I always say "give me the M for Mommy".

May pictures

Sporting her cute new Dora hat from Aunt Susan
Hanging out with Ronan
Reading Bear Snores On before bed
Little ipod/iphone junkies!
Mommy and her sweet girl

Natalie Knows Part II: Letters

I can't help but be amazed by all the knowledge that is inside Natalie's little head. I wonder how much more she knows that I don't realize - probably a ton! The first videos I took had the letters in order. I thought about it and wondered if that made it easier for her to pick the right one so as you can see in these videos I mixed them up just to prove that she could still get them right. As you can see, she sometimes has trouble with B and D, I think because they sound so much alike. I plan to show these video clips to her preschool teacher for next year so Natalie can't fool her. Just because she can't communicate with words doesn't mean she doesn't know what they all mean!

Natalie Knows Part I: Shapes

Taking a walk

Natalie and I walked over to bop and grandma's house tonight. So glad for nice weather finally!

Negative!

I called the neurologist's office yesterday and got a response in record time for them (under one hour). Natalie's EEG was negative! Whew! Even though I had feeling that it would be, it was still a relief to hear the nurse say those words. She will just have her regular annual neurology follow up with Dr Franz in June and hopefully no further seizures in the meantime (or ever again)!
More updates to come soon about the cool stuff Natalie has been learning lately and about an advocacy training series that I've been lucky to be a part of recently.

Lucy's Baptism

Lucy and David Kiernan

Carter

Natalie (she looked so adorable but sadly would not cooperate for a picture)

Ronan wearing his cool shades on the way there

Lucy again -she's such a cutie!