Bloggers Block

It’s official – I started this blog only 3 months ago and I already have blogger’s block. It’s not that I don’t have a lot of new things to talk about, it’s just that I don’t feel like fully diving into each topic to write about them. Maybe it’s because I feel like there are too many unrelated things to talk about for just one posting. Maybe I’m just being lazy. Who know’s?!? What I do know- when I started this I vowed to make sure I gave it my all. SO- for now I will briefly mention a few new things going on in our life and when I get out of my funk, I will revisit them and provide the attention they deserve.

1. Ella experienced her first parade over the weekend. I was nervous, but she loved it and was great at collecting candy.
2. Joe, Ella and I participated in our first 5K. It was so much easier and rewarding than I had expected. I just may invest in a running stroller, but don’t quote me on that one.
3. I met with Birth to 3 today to set up Ella’s speech therapy plan. Overall, I am very optimistic that it will make a change in Ella’s speech development, but I am also realistic that it just may make me feel like a better parent because I am trying to do something about it.
4. I scheduled Ella’s first pediatric dentist visit for August. When I called to schedule the appointment the receptionist said they usually like to see kids for the first time 6 months after their first tooth. Considering Ella is 19 + months and she has had teeth since 6 months old, we are a bit behind.
5. We will be meeting with our surgeon again in August to re-evaluate whether or not surgery should be pushed up. Ella still has a hole in her palate due to the tear in the last surgery. At our last appointment (May) it was determined that we could wait, however I think the hole may have some effect on her speech – so we are going back in.
6. I called and confirmed that Ella has missed both her 15 and 18 month physical appointments so I have re-scheduled those since no one felt it was important to mention that to a first-time parent.
7. We are getting professional family pictures taken again this weekend. This time we are going to Don’t Blink Photography. I am really excited, but that means the stress of outfit selection begins again.

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Overwhelming Inspiration

!!!WARNING – If you are not in the mood to cry, I would not click on a SINGLE link or video within this post. I am truly a better person after today, but a lot of tears were shed on the road to get there. I will thank God for my family and friends everyday – because no matter how bad things seem, someone out there is always going through so much more than you can ever imagine!!!

Tonight I sat down to research for more cleft lip and palate resources to share with fellow parents on Cleft Awareness. Lets just say if I can see through my tears to write this post, we will call it a good night. Maybe Caroline Mueller is right – I do seem to find the saddest stories online. It’s almost as if there is a magnetic force that brings them to me.

In my search I came across a blog called Cleft Notes that offers a few good resources however, the real gem was a section called Families We’d Like to Introduce You To. In normal fashion I was digging through some of the families to read their stories. The first was Cami & Ezra, a California couple with two boys – one born with a cleft lip. Since they had something to offer me, I kept digging.

This is probably the error of my ways. I came across Jenny & Jack. Jack too was born with a unilateral cleft lip and bilateral cleft palate. As I read her recent post, I must never forget.- I was sucked deep down in a spiraling pit of sadness. Jack is a miracle. In addition to his cleft lip and palate he was born with many more serious illnesses and was not supposed to live, but he did. Within Jenny’s post she shared stories that she too had come across.

And thus the beginning to the end of my night. She posted a video that was shared from Kara Faith. The story of a beautiful little girl who lived for just short 7 weeks. I cannot imagine the pain that her family must endure every day.

While I was watching the video about the loss of Kara Faith the song playing in the background was beautiful and lets be honest, music is always the dagger that jerks out the tears. So I began to dig to find out who wrote it. It turns out the song was wrote for Audrey Caroline, by her father Todd Smith, the lead singer of a gospel group, Selah. Unfortunately the Smith Family was not as lucky as Joe and I. Their doctors gave them the awful news that their baby girl would not live long past birth, or at all. Audrey lived for 2 and a half hours. Listening to her parents speak about how grateful they were for those 2.5 hours was so amazing. I cannot begin to fathom that feeling. You can watch their entire story here: Part 1, Part 2, Part 3

You still with me? Remember, I forewarned you of the sadness – do not blame me!

I truly believe the worst feeling in the world would be to let your child go much before their time. When we were first expecting Ella we conducted so many tests. We had decided that no matter what the tests showed, we were having Ella. That was until we were told of another test that checked for signs of rare chromosome diseases. If any of those results came back positive, there was a possibility Ella would not live a long, healthy life – or at all. While anxiously waiting for the test results, I was no longer firm in our decision to keep Ella. What if the results were positive? Would I really be able to be given the greatest gift in the world, to simply return her shortly after? To be honest – I can’t answer that question and I am so thankful I don’t have to, as the results showed an isolated cleft lip and palate.

After my “research” tonight – I am thankful. I am grateful for the gifts I have. I feel privileged to have a happy and healthy family.

We are truly blessed.

To end on a bright note because we all need some smiles, I will leave you with this. I love that kid.

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Double Edged Sword

About a month ago I mentioned that we planned to have Ella’s speech evaluated by a pediatric speech therapist. This past Wednesday (June 23, 2010) two therapists from Birth to 3 (an early intervention program for infants and toddlers with developmental delays) came to our house to spend some time with Ella. One of the women focused on all developmental aspects and the other solely focused on her speech.

I knew going in that Ella had to have at least a 25% delay in order to be qualified for the program and to receive an individual service plan. To be honest, I felt like the meeting was going to be a waste of time. I mean – Ella talks! What other kid can say Narley at 18 months? That’s talent.

The women were very nice and welcoming, they even brought two entire bags filled with toys for Ella. Despite the bribery, I have never seen Ella so quiet. She wasn’t scared, just quiet. She warmed up to them in a few minutes and played with both, but for the most part – didn’t say much or make any noise really.

While she played they both asked me a million questions. Does Ella chatter often to herself? How many words are within her vocabulary? How does Ella interact with other children? etc. etc. For the most part I was able to answer the questions, but it would have been really helpful to know some of the questions ahead of time so that I could be better prepared. Example:
Q: How does Ella interact with other children?
A: Well, since Ella goes to daycare because I have to work to feed her, I don’t see her interact with other kids often.
In the above case it would have been helpful to speak to her daycare teachers ahead of time so that I could answer their questions more accurately.

Nonetheless, at the end of the appointment the woman who was evaluating Ella as a whole felt she was more advanced than other children her age when it came to social, emotional and motor skills. She was able to complete tasks that were meant for children much older than her. The speech therapist felt it was very evident that Ella understands language, however actually forming words is a challenge.

So – she was qualified for the program and we are currently waiting to receive our individualized plan. I am really happy that I took the initiative to have her evaluated and grateful that she is going to receive help, but at the same time – that day was a bit sad for me too, hence the double edged sword theory.

Everyone wants their children to lead normal, happy and healthy lives. I realize that sometimes I am overprotective of Ella, but she has already been through so much in her short life that I want to protect her from as many things as I possibly can. I guess I can think of speech therapy as a way to protect her. If all goes well, she will be able to speak normally by the time she goes to school and she can avoid other little kids making fun of her. Cross your fingers!

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Ella Marie Leschisin

This past weekend I was mentioning how far behind I am on Ella’s Life scrapbooking endeavor – which made me pull hers out and take a peek back at some of the pages I have done. While looking through I came across the definition of her name that I included on one of her pages.

When we were selecting a name for our little girl, we kept coming back to Ella. Then when we were researching her cleft lip and palate, we came across a little girl whose name was also Ella. Her story was so inspiring it seemed as if it was meant to be and thus Ella Marie Leschisin was “born” – or so to speak.

Take a look at the definition for yourself, it’s pretty dead on. I know I may be biased but in Ella’s short life, she has this amazing ability to attract people all around her – it’s almost magnetic.

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Happy Father’s Day

I promise to get back on the blogging bandwagon in the coming week, but I wanted to quickly wish Joe a Happy Father’s Day! You are a great daddy and Ella and I are both so lucky to have you, our lives wouldn’t be the same without you.

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