Thursday, July 21, 2011

She Makes Me Giggle

2 What are your thoughts?
Yesterday, Ellie and I had one of those times that are special between a mother and a daughter. We were telling stories and dreaming about the future. We giggled and laughed hard at Ellie's stories of what life will be like when she is a grown up, which for her it means she will be 18. She already knows who she is going to marry and what will happen when they see each other again...when they are 18. And when they get married, they will both change their names. She will be Rapunzel, and I am sure you would have never guessed her husband will be named Flynn Rider. Then, they will act out the movie. Oh, and she will "paint" her hair yellow.She is only 6 years old and her stories are silly and funny, yet, what I loved about it was that she was sharing those with me. I want us to always have this. I want her to always know she can come to me and share her dreams, no matter how silly they might be. I want us to giggle and I want to be a good listener. I want her to value our relationship, and for her to value what I have to say. My relationship with Ellie is precious. She is a special little girl, with a heart full of love, joy, and acceptance. How blessed I am to have her as my own.

Tuesday, July 19, 2011

If She Is In the Mood

6 What are your thoughts?
This is what you will find Nina doing around our house if she is in the mood. We wish she felt like doing this all the time, but it takes much convincing from our part. One week makes  a big difference! I am a HUGE fan of rhizotomies.

Monday, July 18, 2011

Parks, Parties, and Presents

3 What are your thoughts?
We have had a very busy week! It started with friends visiting us followed by my family coming to stay with us for a few days, followed by my sister in law and her family stopping by for the night. Throw in there school evaluations for Nina and Nichole and getting ready for IEP's on Thursday. I hope you are ready because at this point I have several blog posts coming up, and I might be blogging twice a day! Ha!

My mom, her husband, and my sisters finally made their way to come visit our new home. It was great fun to have them here and my girls were very excited. Andy was excited really, he was happy to see my family.

Ellie's birthday is coming up in August, and my family has been able to be a part of it every year. However, this year might be a little different as my sister is getting married the week after Ellie's birthday. For that reason, we decided that an early birthday party would be fun.

Ellie chose to go to the park, have cake, ice-cream, and presents of course. She waited patiently until it was time to go.

 Once at the park I stayed with Nina so I could help her walk while the rest of the family divided between playing with Ellie and chasing Nichole. However, Nichole did go down some slides and actually climbed around the playground. She was a little bit more interested in playing than wandering which is really good!
 Yes, I even went down some of the slides. What can I say, I love slides, swings, and playgrounds! There is a kid inside of me still.
See this fancy contraption around Nina? It is a walking aid called the Jolly Jumper Walk Eze. Basically it allows me to help Nina with her balance when she walks. If she falls, I can catch her right away. This walking aid gives Nina incredible security and it was incredible to see how well she was doing getting around in the park. She did a lot of walking on her own and she really used the support very little.

 Ellie had a blast. She was running all over the place and at some point she was running away from the pirates with my sister.

Nina was also having some fun without the walking helper. It was so much fun to see her move like that.

 Once home, we did have some delicious chocolate cake.
 With the grandparents who liek to spoil her and make her feel special.
 And I was able to get a picture of Nichole before she yelled at me. we suspect Nichole is allergic to cameras since every time she sees one she yells, "NOOOOO!!!!" and hides.

 Ellie has been wanting this Rapunzel tower for a really long time. It was a constant topic in conversation, "When it is my birthday I really hope I get the Rapunzel tower." It was so fun to see her excitement when she opened it up.
 Along with the bike, Ellie got a  Flynn Rider doll, a Rapunzel dress, a Rapunzel book, a paint by number set, and some clothes. Thankfully, the dog returned home with his owners.
 And here I am with my sisters. or "the other sisters" since my girls are "the sisters." The difference is that there are only 25 months between all 3 of my girls, but there are 13 years between my sisters and I. You cannot tell there are so many years between us, can you? Well, thank you!
 And just for the record, my baby sister (who is 17) is not that much taller than Alex and me, she was just wearing high heels.

Tuesday, July 12, 2011

What She Is Up To Today

9 What are your thoughts?
The Theratogs have really helped Nina with stability and posture. I really think this has helped her feel more confident in her walking. And she really wants to walk...maybe because we have promised any toy she wants, but the point is she wants it. This morning the first words I heard were, "Mom, I want to walk, can we practice?" Sure thing girl! So we got her "gear" on and look at her! We started small, and we kept increasing the distance.
I have a walking helper and she walks all the time with it, but she has the security of me catching her if she falls. This is all her though! And this is what walking is all about!
It amazes me that it has only been 3 months since her rhizotomy!

Of course we were watching Signing Time!

Saturday, July 9, 2011

Ellie Rapunzel

2 What are your thoughts?
Ellie can quote the movie Tangled from beginning to end. Seriously, she knows every single word. Not a day goes by without the girls acting it out. Nina is usually the willing participant as she becomes Flynn Rider and gets tied down to a chair. Ellie also likes to do Mother Gothel's part and Nichole just likes to act out every character.

If the girls don't watch the movie, have no fear, they will act it out or their Rapunzel dolls will play the movie. I suppose this is the part where I confess that Andy and I can also quote a lot of the movie.

I mentioned before that Ellie likes to sing the songs. She really has a great voice and I love how she is learining and trying to play with her voice. The only problem is that she claims to be too "shy" to sing for me. I have been trying to get her to sing for me so I can tape her and she won't do it, or she gets to shy. But, I finally got her at least for a little bit until she saw what I was up to. She got shy, but she did not stop singing, which usually happens.e

Friday, July 8, 2011

Post-Rhizotomy Week 12

4 What are your thoughts?
It is hard to believe that it has been 12 weeks since Nina had her rhizotomy done. I am one of those people that don't notice change when it is gradual. A pretty bad quality to have when your children have special needs. Just last Sunday a lady from our church mentioned that Nina was walking so much better compared to the week before. I was amazed she had noticed the difference of only a week, but as I thought about it I realize that every week she does get stronger and stronger.

As far as mobility goes, Nina is fully capable of walking. Fear is keeping her from doing this, so we are targeting that fear in any way we can. Andy and I decided that maybe Nina needed an incentive for walking, so we took her to Toys R' Us and told her that when she walks on her own, she will be able to get ANY toy she wants. Anything at all! Thankfully (for our budget) she wants the Rapunzel boat that comes with a Flynn Rider. I am sure she wants this because this is something Ellie wants for her birthday too. Since we gave this incentive, she has been practicing her walking and balance all on her own. Incredible!

We also began using theratogs. Nina's left leg turn in pretty bad, and the theratogs help pull it out a little bit. I does help, but we are pretty sure she will need surgery to correct this.

The leg braces really have helped. What they do is gently stretch her hamstrings, so when she stands, her legs are straighter and she has a better range of motion when she walks. More important, by keeping the muscle "long" as she sleeps, her muscles are working and hopefully growing. Growing is something her muscles did not do due to her spasticity. Long hamstrings mean that she will be able to walk better and move better. They also mean hopefully one less surgery in the future.

Nina still prefers to sit in a W position, but if we remind her, she sits like a pretzel or a ballerina on her own.

When Nina is not using her braces, we also have to remind her to put her heels down, as the toe walking habit is still there. With her braces, her heels touch the ground at all times...unless she is using her walker (reason you have heard me say I have a love hate relationship with the walker)

Nina can balance on her own for a long time if she wants to. Sometimes she balances so well that you think she got it, then fear takes over and she looses her balance. This again, is a confidence thing, but we are slowly getting there. I think 20 seconds is pretty average for her now a days. Although she has even made it a full minute, just once.

Nina is also consistently taking 2 steps on her own when we practice. Now you might think this is nothing, but 2 steps are 2 steps in the right direction. I will take the 2 steps over no steps at all. And 3 steps can become 3, then 4, then more.

Here is a little video of Nina walking. We took it with our camera so the video quality is not very good, but look at this girl trying to walk! I think seeing her best friend Oksana walking really pushed her while we were there. I am telling you, this girl is going to walk!

If you have any questions feel free to ask!

Thursday, July 7, 2011

Nina's Best Friend

3 What are your thoughts?
I have not updated the blog for a few days. Do you know why? Because our family was visiting Nina's best friend and her family. Oksana and Nina were best friends at the orphanage, and they were very happy to see each other again. Seeing them together was joyful, two little girls that loved each other, yet had no hope or a future. But now they have families, they have siblings, they have a mommy and a daddy, and they still have each other.

Like they have said, it is rare when every member of your family clicks so well with every member of another family. One of the blessings Nina has brought into our family is the Loraines, how blessed we are by their friendship.

So hop on over to Erin's blog by clicking HERE and take a look at what our days with Loraines were like. She even has a video of Nina and Oksana reuniting again!

Saturday, July 2, 2011

Book Review: The Inconvenient Marriage of Charlotte Beck

2 What are your thoughts?
The Inconvenient Marriage of Charlotte Beck
A Novel
Kathleen Y'Barbo
This Western Historical Fiction takes place in the late 1800’s. Rich American girl, Charlotte, is spending time in England where she quite literally falls into the arms of Viscount Alex Hambly, the astronomer. Fate continues to bring Charlotte and Alex together. They dislike each other yet fancy each other with just as much intensity. The Hambly family is facing financial ruin, and Charlotte’s father wants to see her married to a respectable man. He makes an offer neither one can resist. Charlotte may go to the University and get her degree if she agrees to marry Alex. Daniel Beck will take care of the Hambly financial situation if Alex agrees to marry his daughter. Charlotte and Alex secretly plot to annul their marriage shortly after the wedding. But Alex’s heart is changed and he has no desire to annul his marriage, but rather, spend the rest of his life with Charlotte.

What I liked:

-It is a clean romance novel.

-I could not put the novel down, I found myself laughing aloud several times and smiling as I “listened” into Alex and Charlotte’s conversations. Somehow, although we really know little about whom these two really are deep inside, they really have great “chemistry” together and it is hard not to want to see them finally admit their feelings.

-It is a cute love story.

-It is a story that I would love to see as a movie! I think it would make a great romantic comedy, and it might be one of those where the movie is better than the book…

What I did not like:

-There are several characters that come into the story as part of what would seem a major plot line yet they quickly disappear leaving one wondering what happened to them. Like Alex’s twin brother.

-Characters were shallow, lacking in depth. Who are they? How do they feel and why? Why is Charlotte insecure? Why does she not want to get married? Why is Alex angry with his family? Or is he?

-Some significant elements of family relationships were not explored or explained throughout the book. For example, we know from the beginning that Charlotte lost her mother in some way. We also know that she is not to ask or talk about her and Charlotte is quite affected by this. Yet, we never know why. The resolution to the issue with her mother was quite disappointing. All of a sudden, there were connections from several characters going back to the mother only to be resolved in a quick exchange of words and moving on too easily.

In general:

-This is really just a story about Charlotte and Alex liking each other and pretending that they don’t. The rest of the story is weak in plot and characters.

-It is not a Christian book. If you are looking for a Karen Kingsbury book where the characters are rooted in faith and talk about their relationship with God, this is not it. It is a clean book and a cute story, but do not look for a Christian element to it. Sure, Alex is a “man of prayer” but it is not a relationship with God that we see throughout the book. The few times “faith” is brought up seems forced into the story as it is not a main element or consistent with the characters. Charlotte’s dad does pray for the newlywed couple, a prayer that makes Alex decide he will not annul the marriage and do what he can to stay married. But that’s it.

-Overall I liked it, but I found myself closing the book and wanting more, almost like I had not read the entire story and feeling like some pretty significant issues were never talked about.

-I thought it was a fun read, and it had me turning the pages late into the night. Nevertheless, I would warn the reader not to expect solid writing with great plot and character development, as fun as it was and as much as it grabbed me, I felt let down as I read the last page.

-In her acknowledgements, Y’Barbo writes to her husband, and we learn she finished the book while on their honeymoon, where she was tempted to rename the book “The Never Ending Story” Information that made me understand maybe why her book resolution was so weak, and so disappointing. But I still give her some credit, because Alex and Charlotte sure had great chemistry and they made me laugh several times.

You can read the first chapter of the book HERE as well as see some more information about the book from the publsiher's website.

I received this book for free by Waterbrook Multnomah publishers in exchange for my honest review.



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