NATALIE'S STORY

Fall pictures

2012-01-16T19:29:00.000-08:00

These are just a few of the amazing pictures that Mandy of Legacy Pics took of Natalie back in October. She also got some great pictures of my sister's family and some of the 3 kids together.

Curls!

2011-12-09T18:23:00.000-08:00

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

2011-12-03T16:47:00.000-08:00

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

Helpers

2011-11-27T15:33:00.000-08:00

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

Little Turkeys

2011-11-25T05:49:00.000-08:00

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

2011-11-14T20:23:00.000-08:00

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?

2011-11-11T13:20:00.000-08:00

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

2011-10-28T14:47:00.000-07:00

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

2011-10-10T15:59:00.000-07:00

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

2011-09-26T19:42:00.000-07:00

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?

2011-09-23T11:05:00.000-07:00

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--

2011-09-20T13:35:00.000-07:00

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

2011-09-15T18:55:00.000-07:00

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

2011-09-10T20:13:00.000-07:00

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

2011-09-04T16:30:00.001-07:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

Natalie is 5!

2011-09-02T20:53:00.000-07:00

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!

2011-08-27T19:32:00.000-07:00

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

2011-08-26T19:12:00.000-07:00

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

2011-08-18T16:01:00.000-07:00

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

2011-08-15T09:10:00.000-07:00

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

2011-08-15T09:08:00.000-07:00

July

2011-07-24T16:59:00.000-07:00

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

2011-07-09T19:52:00.001-07:00

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

Josie Renee

2011-07-05T15:32:00.001-07:00

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!

2011-06-19T05:20:00.000-07:00

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!

2011-06-04T05:08:00.000-07:00

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

2011-05-29T09:05:00.000-07:00

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

2011-05-13T11:08:00.000-07:00

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

2011-05-08T16:41:00.001-07:00

Taking a walk

2011-04-30T21:57:00.000-07:00

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

Negative!

2011-04-23T11:41:00.001-07:00

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

2011-04-11T14:49:00.000-07:00

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!

Strep & Seizure Update

2011-04-11T13:56:00.000-07:00

Since I last posted, Natalie has been diagnosed with Strep two more times, most recently today. Yuck! The first time she had it in March it seems that the Bicillin shot she was given did not totally kick the bug so she ended up having to get three days of Rocephin shots in her legs (one in each leg, 3 days in a row). Poor Natalie, she was not a happy girl. After the Strep seemed to be a thing of the past, she developed a cold which lasted about a week and a half. Just as she seemed to be getting over the cold last week, her coughing started up again this weekend and she was having trouble sleeping because she was coughing so much. Last night she had a fever and we both slept poorly because she was up constantly during the night crying and wiggling around like she was in pain. She finally slept fairly soundly from about 4am to 9am. No school or work today and we visited the Pediatrician who did a rapid strep test which turned out positive. He said the only two shot options are Bicillin or Rocephin again so we went ahead with the Bicillin (it's only one shot). Hope it works this time. I told Natalie that I don't want to go back there until her 5 year well child visit in September. Hopefully, she will stay healthy until then!

A few weeks ago, we went to her Neurology appointment and saw the Nurse Practicioner who was very nice. She said that from the description provided, it did sound like Natalie had a seizure at school last month. However, before they diagnose a seizure disorder or put kids on ongoing seizure meds, there must be two "unprovoked" seizures, meaning two that are not related to illness/fever. Since hers occurred the day before the first Strep diagnosis it would be considered a "provoked" one. So, nothing changes now other than she was given a prescription for Diastat which is a drug to be administered should she ever have a seizure that lasts more than 5 minutes. She will have one with her all the time and a dose will also be kept at school, like with her Epipen. However, they do want her to have a sleep-deprived EEG and this will be done on Friday. For this test, she is to go to bed at her normal bedtime and will have to then wake up at 2 am and stay up until the test is done at 7am! Sound like fun? If it does, feel free to come over and help me keep her awake from 2am until 7am on Friday morning! I'll blog about how it goes afterward. Hopefully they will not find anything abnormal.

We are ready for Spring and no more sickness!

Strep and Seizures?

2011-03-12T13:32:00.001-08:00

Natalie LOVES the GIANT cookies Howard buys for the kids every week at DLM.

This week has been a strange one. On Tuesday I got a call from Natalie's preschool teacher describing 2 "events" that they had just witnessed with Natalie. As her teacher and the school OT described it, Natalie had what looked like a tremor start in her foot and move through her entire body while at the same time moving her mouth into a "grimace". She did this twice within a few minutes. They were concerned about possible seizure activity. No one who has spent time with her since has witnessed any further events. However, I thought it would be best to contact the neurologist and she now has an appointment for March 22. Ugh! I really hope that she's not having seizures. I hate to think that she may have one more condition to deal with. However, the Neuro previously told us that children with CP are at increased risk for seizures. I'm trying not to think or worry about it much because it may be nothing.

On Wednesday, the school called again because Natalie was acting really tired and when they took her temp it was around 100. She has had a fever since then but it's always under 101 and usually more around 100. She has been acting totally fine other than being a little more tired than usual. Since today was her fourth day with the fever I decided to take her to the Ped to see if something other than a virus was going on. Turns out, after over 2 hours in the doctor's office, Natalie was diagnosed with strep throat. After discussing Natalie's issue with taking medication by mouth (normally gags so much she makes herself throw up), he asked if I wanted her to have an antibiotic shot instead. Poor Natalie! She was SO mad about the shot but I was so relieved that I would not have to figure out how to trick her into taking antibiotics for the next 10 days!

By the way, the big girl weighed in at 38.6 lbs (with her AFOs and shoes on). No wonder I have been having so much back pain lately.

For now I just wanted to document what has been going on. I have a few other posts planned in my head that I hope to get to soon.

I think next week will be a much better week for us!

Lunch Date

2011-03-04T12:09:00.000-08:00

Natalie had a lunch date with one of her favorite people today - Brian. She was a little annoyed that he did not have Amy with him but she got over it and had fun anyway!

December Recap

2011-02-01T18:50:00.000-08:00

I have no idea why this picture ended up so tiny. I can't figure out how to change it right now and I love it so here it is anyway!

Now that it's February I figured that I should really get caught up here. Natalie had a wonderful holiday season. She loved the parties, the gifts and the time with her cousins and friends. Here are some pictures that pretty much say it all (and in no particular order):

On December 28, Ronan's new little brother Jack Edward finally arrived!

Natalie and her best friend Amy

Aunt Susan reading to Natalie and her friends Emily and Sarah

Mommy and Natalie

She loves trucks!

Eating a cookie and showing us how she uses the Vantage Lite (on loan from Assistive Technology Ohio since she still has not received her own).

At the Victoria Theater waiting for Mooseltoe: A New Moosical to start.

Opening presents

Waiting for dinner at the annual DiNizo/Haluschak Christmas party

Playing with the favorite present of the year: Chicken Dance Elmo! (from Nana)

Helping Mommy pick out the Christmas tree

Kiernan, Ronan, Carter, Natalie, Lucy

All the cousins (before Jack's birth).

Beautiful!

2011-01-07T13:17:00.000-08:00

I just LOVE this picture of Natalie that my awesome friend Cathy took. She was so cooperative and did what she will never do for me - smile AND look at the camera at the same time!

Expect more updates soon. I am still going through my December pictures to put together a post about our wonderful Christmas this year.

Preschool Christmas Party

2010-12-26T13:16:00.000-08:00

Natalie had a Christmas party at preschool last week and Cook, Ronan, Aunt Hez, and I were all able to attend.

Waiting for the party to start.

Ronan's here! Oh boy, I never get to see him.

Ronan hamming it up for the camera (looks like Natalie's considering kicking him).

Ronan enjoying the toys in the classroom.

Oh boy, it's Santa. Natalie was very excited about Santa. Ronan, not so much. Even though Santa had a gift just for him, Ronan was not about to go within 10 feet of him. I bet next year will be totally different.

Just a kid

2010-12-15T21:26:00.000-08:00

I love regular moments like those captured here, when I watch Natalie playing, like the little girl that she is. She's growing up and it's fun to watch her.

Thankful

2010-11-26T12:36:00.000-08:00

Reading my friend Anna's recent blog post inspired me to write a short post about what I feel thankful for this year. Unfortunately (or fortunately for my family and friends), I am not nearly as funny or sassy as Anna! If you want a good laugh, be sure to read her post.

I won't pretend that this has been anything other than a difficult year for me. However, I've gone through other difficult times and it's true that it always does get easier and better as time goes on. I am lucky in SO MANY ways. First, I am lucky to have Natalie and I try to never forget how easily that may not have been. She loves me unconditionally and completely. I am inspired by her persistence and amazed by how much she is learning and asserting her independence lately. I also love how she curls up against me and sticks her little hands under my arm to go to sleep at night.

In addition, I also happen to have a truly awesome family. I don't even dread spending time with them during the holidays like many do. In fact, I look forward to it! My family understands me like no one else and they do everything they can to help with Natalie. Seeing my nieces and nephews grow up and interact with Natalie is amazing. They get so excited to see her and they help her do things that she has difficulty doing on her own. Natalie loves giving everyone kisses and likes dancing with Ronan and Kiernan and wrestling with Carter.

Then, last but not least, I have the greatest friends! They keep me entertained (Roller Derby - need I say more?) and help me out whenever I need it. Many of my friends have known me since junior high or high school and know me as well as my family does.

So, in case I don't say it enough or at all, I truly appreciate all of these people who make my life (and Natalie's) so much better!

Natalie's 5 years of Halloween fun

2010-10-31T15:52:00.000-07:00

NICU baby 2006:

Piglet 2007:

Kitty Cat 2008:

Monkey 2009:

Pinkalicious 2010:

Pink and Tink: **Natalie stood without any support for about 30 seconds**

With the whole gang: Kiernan (Tinkerbell), Natalie, Carter (The Amazing Bumblebee), and Ronan (cowboy):

Natalie did a GREAT job walking with her walker up to several houses this year. I am so proud of her. After she followed her cousins up to about 5 or 6 houses, she insisted on holding a piece of candy in each hand and having me carry her. When someone would try to give her another piece of candy she would try to give it back to them! She dressed up as Pinkalicious, a character in one of her favorite books right now. I love seeing how much she has grown up over the last 4 years!

The amazing Ipad

2010-10-15T12:33:00.000-07:00

Check out this link to a Wall Street Journal article about children with special needs using the Ipad for communication. Since Natalie's communication device just got denied by insurance and medicaid, an Ipad could be in Natalie's future. (Although I will be appealing the medicaid denial).

Little bits of Natalie

2010-10-10T13:37:00.000-07:00

There are so many times throughout the day that I see Natalie do something and think that I need to remember to blog about it. I don't want to forget the little things that she is learning and doing all the time. So, this is just a little list of Natalie's recent quirks and accomplishments:

*She can make herself sneeze. I have no idea how but I think it's an impressive talent! I discovered this a few months ago when she sneezed and when I laughed at her and asked her if she had to sneeze again, she did (over and over again)! I need to get it on video.

*She has been adding a few new foods to her diet here and there. She will now eat hummus (if it's on a pretzel and spread pretty thin) and pumpkin bread (stuff I made that I thought was mediocre at best). She has also been drinking prune juice mixed with her bottle of Pediasure at night. Next step is to eliminate the bottle (she just has one at night but it's a pretty solid part of her bedtime routine)!

*She can walk much longer distances with her walker and she just learned how to turn it to go in different directions. The turning process is still rather unsafe if someone is not right there next to her but she is getting better every day! She seems to relish the freedom it gives her and she is getting VERY stubborn about doing the walking thing her way (i.e. picking the direction, the pace, stopping/starting etc). She's also been trying to stand up by herself in the middle of the floor but her balance is not quite there yet to be successful.

*She likes certain parts of preschool but I am not sure she is as excited about it yet as she was last year. It's hard to live up to Miss Davis! However, Natalie does seem to at least enjoy gym and library time and I think as time goes on, she will love it as much as she did before.

*She follows directions so well! She heads straight for the stairs and goes up to her bedroom when I tell her that it is nap time. She gets certain toys or books when I tell her to. Natalie goes right to her chair in the kitchen when I tell her that it is lunch/breakfast/dinner time. I should note that she has been able to follow directions pretty well for awhile now but I don't know if I've ever made it a point to note it. I just started trying to teach her letters and I think she will pick up on it pretty quickly. I tested her today on one of her toys which has rather small letters buttons and she seemed to know "N" and "A" after I showed them to her a few times.

*Natalie had her first appointment with her new pediatrician a couple weeks ago (4 year appt)and she was 35 lbs and 39 inches tall. That is the 47th percentile for weight and 28th percentile for height. This is GREAT for a former micropreemie! It's funny that she's only at the 28th percentile for height because everyone always comments on "how tall" she is.

*She has now had stitches in her chin a total of 4 times(May 2009, January 2010, April 2010, and August 2010) and her ped said that the next time she needs them(because there will be a next time), I should have the ER doctor put a few internal stitches in first. He made it sound as if they should have known to do this before - interesting!

Cook's babies

2010-09-14T13:03:00.000-07:00

My mom loves all her grandchildren and how could she not? They are all so adorable and have such unique and fun personalities. Notice the newest addition, Lucy Marie, in my mom's arms. She's beautiful and Carter and Kiernan are helping their parents take good care of their little sister.

Natalie hasn't quite gotten the hang of hamming it up for pictures like Kiernan and Ronan have but don't worry, they are working on teaching her.

Check out these two blonde Backyardigan junkies watching TV together:

Party

2010-09-14T12:40:00.000-07:00

Just wanted to do a quick post of birthday party pictures. Cook and Howard hosted a little birthday party for my big girl on Sept 5. She had tons of fun with her cousins, aunts, uncles, grandparents, great-grandparents and friends! Thanks to everyone who came to celebrate with Natalie!

Happy 4th Birthday Natalie

2010-09-02T19:38:00.000-07:00

Wow, Natalie is such a big girl now, a 4 year old preschooler! To think that just 4 years ago tonight she was born a 1 lb 6 oz micropreemie. I am so proud of all that she has accomplished in 4 short years and I can't wait to see what she will be able to do after 4 more.
We had a little birthday photo shoot in which Natalie very UNenthusiastically participated.
What mommy, you want me to cooperate? HaHa!

Maybe I will just pick my nose...

Or play with my toy Boots(thanks Kristin!)...

Or lick my knee...

Fine. Is this what you want?

This is as good as it's going to get tonight. I guess she's at least looking at the camera in this one(well, sort of anyway)!

First day of school

2010-08-16T19:52:00.001-07:00

Natalie started her second year of preschool today. Since we have moved she is in a new school and new school district (actually the same one that I went all through school in). The drop off was a little chaotic so I did not have time to get a picture but when I picked her up I was able to get a few although Natalie was obviously not in the mood for a picture. Aunt Hez and Ronan were there with me to pick Natalie up - they needed to practice since they will be doing the school drop off/pick up several days a week.
Natalie's teacher said she had a good day but I didn't get much detail about what they did so there's not much to tell. I'll update again soon when I have some more details.
In the meantime, compare last year's first day of school to this year by clicking here.

Best Friends

2010-07-24T11:23:00.001-07:00

Natalie loves when anyone reads to her but she especially loves Amy. Oh, and even though I didn't get a picture of it, she also loves when Brian reads to her. Thanks to Amy and Brian for cutting down on the time that I have to spend reading!

June updates

2010-07-09T20:02:00.001-07:00

Wow! So much has been happening with Natalie since I last posted. Here is a recap of June in pictures: She finished her first year of preschool. Here she is with her teacher, Miss Davis, who she LOVED! She got glasses in mid-June and has been so good about keeping them on! She started Hippotherapy (again) and Aquatic Therapy (new therapy for her). She's been spending a lot of time with her cousin Ronan. And Kiernan and Carter too. She's been walking like crazy too!
Which makes her so tired that she sleeps all night (ha ha..let's say half the night if I'm lucky) in her new big girl bed!

Interesting article

2010-06-17T21:03:00.001-07:00

Just wanted to post a link to an interesting article that I just read about stem cell therapy:
http://www.washingtonpost.com/wp-dyn/content/story/2010/06/05/ST2010060503456.html?sid=ST2010060503456

A WALKER!

2010-06-11T13:56:00.000-07:00

Back in January, during a brief encounter with Natalie's school physical therapist, she said to me "I see Natalie being a walker in the future". A few years ago I would have cried with relief if a therapist had told me this. At that time, however, I just thought "I know". This is because even though I had a hard time picturing her actually walking, I was more confident that she would eventually get there even if it wasn't until she was 5 or 6 or even 10!

Now, 5 months later, she's really getting excited about walking. FINALLY! It's as if something clicked for her and she went from doing just about anything to get out of walking to wanting to walk EVERYWHERE and ALL THE TIME! To make it clear to those who don't see her often, she is not walking independently (yet). She walks with someone holding her hands, as you would with a baby first learning to walk, or she uses a walker. Just this week, I was able to borrow a bigger walker than the one that she was using and she really took off with it. I think she feels more secure in it than she did with the other walker which was really too short for her.

Below is a video of her walking this week! Try to ignore Howard's loud background commentary.

Teddy Bear Picnic

2010-05-21T14:23:00.000-07:00

Reading in the car

2010-05-21T13:56:00.001-07:00

Combining two of her favorite things right now - Dora and books! This is how Natalie keeps herself occupied lately on our drives to and from Dayton. She will look at one page for a long time and then hand the book to me to turn to the next page for her.

Being a mother

2010-05-09T14:05:00.000-07:00

For as long as I can remember I wanted to be a mother. I grew up in a large, close family, always with plenty of people around to play and laugh with. I saw my grandparents several times a week and until I was about 14 years old my cousins lived next door to us! I was the oldest of my siblings and cousins and growing up we had tons of fun adventures together.
I never imagined that the road to becoming a mother would be as long and difficult as it ended up being. However, about 4 years ago this month, I was celebrating my first mother's day as a mother-to-be. I know I was so excited but it all felt so unreal. I'd wanted to be pregnant for so long it was almost as if I did not believe that I really was. On top of that, I was pregnant with twins!
Little did I know then that in a few short months everything would change. I went into preterm labor at 20 weeks and was on bedrest in the hospital until 23 weeks and 5 days into my pregnancy when Natalie and Andrew were born. Being thrust into the world of parenting a micropreemie involved so many terrifying decisions with the very first being did I want to even give my children a chance to survive. They were born so early that they had less than 40% chance of surviving and very high likelihood of having significant disabilities. Most readers know that Andrew survived only 2 days and Natalie spent 110 days in the NICU fighting infections, having surgeries, and learning to eat.
So while the road was not easy in any way, I am thankful that I have the chance to be a mother. Being Natalie's mom is the best! Her wonderful personality makes it easier to put her traumatic beginnings behind and just enjoy her each day.

AAC Trial

2010-04-20T12:58:00.000-07:00

Natalie is currently in her third week trialing the Vantage Lite, an AAC (Augmentative & Alternative Communication) device from an awesome company called Prentke Romich. These type of sophisticated communication devices have opened up the world of communication to many children and adults with disabilities who otherwise would not be able to, or would have significant difficulty, interacting with others. I understand they are widely used for children with neurological conditions such as CP but also for children with Autism and a variety of other disabilities which negatively affect the ability to communicate verbally. Normally, if the trial goes well and everyone agrees that there will be significant benefit from its use, we will place an order for Natalie to get her own! In case some were wondering, the fact that we will likely be going this route does not mean that we have in any way given up on Natalie being able to communicate verbally. Research has shown that AAC devices actually facilitate speech skills and many kids start speaking more, and more clearly, after using an AAC. I am very happy to report that Natalie has very quickly picked up on how to use her device to communicate some basic wants and needs. It was exciting to see that she seemed to really "get it" from the very first day. Below are some short videos of Natalie using the Vantage Lite during meal times. Just a note that this is a very complex device and the way we are using it now is in just the most basic way. See Fighting Monsters with Rubber Swords to learn about Schuyler, an older child who uses this same AAC device in a much more sophisticated way. This will illustrate the possibilities this device will give Natalie over the next several years.

**Please excuse Natalie's crazy hair in the last video. Someone who I won't name but who babysits for Natalie 2 days a week must not have felt the need to comb Natalie's hair that day. I suppose it makes sense knowing that this same person did not willingly brush her own hair until she was about, oh, maybe 10 years old!

Oh, did I forget to tell you? I know my colors.

2010-03-24T11:03:00.000-07:00

I got a pleasant surprise at Natalie's Occupational Therapy session last week. Her therapist was working with her on stacking blocks and started asking Natalie to get certain colors to stack next and I was amazed to see her get it right nearly every time. It seems that she knows green, blue, red and yellow. I had no idea. I wasn't prepared with my camera at the time so this week I made sure that I had the camera ready to get a video or two. She was not really motivated to do the stacking this week as you'll notice but who cares -- SHE KNOWS HER COLORS!

New Skills

2010-03-12T19:14:00.000-08:00

Recently, I was unloading the dishwasher while Natalie was eating. She was eating cheerios and s'mores goldfish crackers (chocolate, graham, and marshmallow shaped fish). A minute or two after putting them on her tray I looked over and saw this:

I was so excited that I ran to get the camera. Why was I so excited you ask? Well, because I have never seen Natalie do any type of sorting activity. I decided to see what she would do if I put a few more chocolate fish on her tray. When I did she immediately looked at them, picked them up one by one, and added them to the area with the other chocolate fish. Not only is this a great developmental step but it shows that she is using her vision well to distinguish colors. I've since realized that she apparently does this because she does not like to eat the chocolate ones. She also doesn't like the marshmallow ones but it's more fun to just throw those on the floor!

Natalie also continues to get stronger and more stable when standing and cruising. She pulls herself up more steadily and confidently. In fact, if she sees something on a table or counter now, she will try her hardest to get it. Here she is in the bathroom trying to reach something on the counter. Just a few months ago I would not have considered leaving her for even a second to get the camera because she was so unsteady she would have likely fallen quickly. Now she can even get herself down from this position safely.

I am so proud of my big girl!

My Valentine

2010-02-14T20:13:00.000-08:00

Natalie had a wonderful Valentine's Day weekend visiting with some of her favorite Valentines. On Saturday she got to visit with both her Mamaw Hall and Cook. On Sunday she spent some time with her Great Grandma and Great Bop.

Natalie and her Great Bop

She also got a special Valentine balloon from Grandpa Howard (it's tied to the back of the fire truck below):

Happy girl driving her truck

I also snuck in some standing practice with her balloon. It was hard to get a good picture because she was so excited about her balloon that she kept losing her balance.

Hope everyone had a great Valentine's Day weekend!

Neurology Update

2010-01-29T19:16:00.000-08:00

On January 21 Natalie went to see her favorite Neurologist, Dr Franz. Really, Natalie probably would not call any doctor a "favorite" but if I had to pick one it would probably be him! I like that he always seems to be truthful yet definitely puts the focus on the positives! He also takes the time to really listen to parents and seems to value and consider their input. On this journey, I have learned that this is truly a rarity among pediatric specialists! Del took Natalie to this appointment so I did not get this information firsthand but it seems that Dr Franz gave Natalie a GREAT report at this visit.
To summarize:
-Natalie looks to him to be getting close to walking. He took notice of her much improved balance since her previous visit.
-She had an EEG after her previous visit and this was negative for seizures. She still is at increased risk for seizures due to her previous brain bleed and resulting damage, but the older she gets without having any seizures the better the odds that she won't develop a seizure disorder.
-He believes that she is definitely trying to communicate with us in words but is just not able to get them out correctly and consistently. Natalie apparently became very talkative during her appointment and told him one of her long stories! Dr Franz thinks that the communication device that Natalie will soon be evaluated for will be a great thing to improve her ability to communicate. It is clear that her receptive language skills are much ahead of her expressive language skills. (Not sure he said that last part exactly but this is pretty clear if you spend any time with her). I will do a separate post about communication soon.
-He supports getting another opinion on Natalie's vision and affirmed my gut feeling that vision therapy is probably not worth the time and money at this time. Natalie has had a prescription for glasses since this fall from her Ophthalmologist but no glasses yet. A second opinion from a developmental Optometrist was to hold off on the glasses for now and do vision therapy (which they do in their office for a rather hefty fee and not covered by insurance). So in order to get a 3rd tie breaker opinion, we are going to be seeing an Ophthalmologist in Cincinnati.

I feel like I am forgetting something so if I am, and I remember it, I will edit later!

Tough week so far..and it's only Wednesday!

2010-01-27T11:51:00.000-08:00

On Sunday night Natalie fell on her chin on Cook's hardwood floor and split her chin open (again). You may remember she did this back in May and had to have several stitches. This time after a fun (not really) trip to the ER, she ended up with 10 stitches. It did not seem to hurt much but she was really mad about being in the ER. Even weighing her and taking her blood pressure really ticked her off. I didn't take any pictures at the hospital but here she is happy to be back at Cook's house at 11:30 Sunday night. Note the mismatched clothing and hospital bracelet.

The rest of her week was going along great until today, when approximately 45 minutes after dropping her off at school, I got a call to come pick Natalie up because she threw up in her classroom and had a 99.3 temp. I got her home and she seemed happy to be home and crawled off to play. She ate a great lunch and then posed for a few pictures:

Today, right after these pictures were taken, she was standing up by the coffee table, lost her balance and fell hitting her mouth on the coffee table on the way down. Ugh. She cried pretty hard but there was minimal blood in her mouth and all of her teeth seem intact. Luckily, she must have just barely missed hitting her chin. Hoping for no more injuries or sickness this week!

Being Real

2010-01-15T20:18:00.000-08:00

I have been thinking a lot lately about my blog reading habits and about what I want this blog to be. Mainly, I've realized that the blogs that I enjoy reading, for the most part, combine several common elements:
-documentation of everyday accomplishments/special events
-reactions life events and/or challenges
-interesting or funny stories about everyday life

Up until now I don't feel that this blog has really met my own "good blog" requirements so I plan to change that. No one expects to have a child with a disability but the reality is that it happens all the time and it involves major lifestyle adjustments and a lot of emotion, both good and bad. Over the last 3 years I have benefitted immeasurably by reading other blogs about kids with challenges similar to Natalie's. This includes the stories of other micropreemies and kids with Cerebral Palsy (CP) and other disabilities. It has made me feel less alone and given me a lot of hope for Natalie's future. I want to be honest about Natalie's disability and how it affects her. Also, I'd like to educate family, friends and other blog readers a bit more about CP. But don't worry - I still plan to celebrate her accomplishments and post tons of pictures of my sweet girl!
So look forward to more posts about Natalie's therapies and therapy goals, equipment, and general development. I'd love reader comments on topics that you would like me to cover in future posts or just questions that you have about Natalie and her development. Don't be afraid to ask anything you want to know!

Looking Back

2010-01-08T13:44:00.000-08:00

Carter and Natalie in January 2008.

Here they are in late December 2009, nearly 2 years later.

Look at how they have changed. The sweet little babies are now sweet KIDS!

Ringing in 2010

2010-01-08T13:18:00.000-08:00

Thanks to friends Krystal and Bob, Natalie had a fun New Year's Eve. She LOVED playing the drums in their basement! All that work making music really tires a 3 year old out though and she crashed on their living room floor around 11pm!

Christmas Pictures

2009-12-28T06:49:00.000-08:00

Mommy and Natalie on Christmas Day

Opening Presents

Telling a story

Modeling her cute new jean jacket from Cathy

Believe it or not, one of the best pictures of this group!

(Kiernan, Natalie, Avery, Lacey)

Uncle Jason with Ronan who was sound asleep in the middle of our VERY noisy family gathering.

Natalie with Cook

Uncle David and Kiernan

Christmas Eve

2009-12-24T21:41:00.000-08:00

Natalie had a great Christmas Eve! Lots of family, food and fun

with Aunt Susan

with Great Aunt Donna

with cousins

She loves her new Elmo book from Ellie

She also loves the new Croatian puppy from our relatives in Croatia

Natalie went to bed exhausted but will be ready for more fun tomorrow!

Music Lover

2009-12-21T20:29:00.000-08:00

Natalie has always loved music but as she gets older she is getting more and more opinionated about her favorites. Right now she loves just about anything by Pink (especially when her buddy Luke is singing it) and she loves listening to the Les Miserables soundtrack in the car. Below is a little video I caught of her "reading" her musical Backyardigans book from Amy and Brian:

Hangin with my cousins

2009-12-07T19:30:00.000-08:00

watching Nick Jr.on a Sunday afternoon

or jumping with Ronan, Kiernan and Carter!

so sweet!

New blog!

2009-11-22T13:08:00.000-08:00

Welcome to Natalie's new blog! I decided to make the change after realizing that while the pictures on the old blog appear normal on my computer they often come up huge and distorted when others view it. I did not know how to fix it so I took the easy way out and just started a new blog. Blogspot seems very easy to use - especially for pictures and videos. This should mean more posts from me (and more pictures) and hopefully easier viewing for you! Check back soon for more updates!