Updates on Kids ...PT, OT, ST..Oh my...

I looked over my blog and realized it has been a month since I gave any updates. I have just done a feww book reviews since then..which I hope you enjoy. I love reading and think its great that I can get books for free just for telling people about them. Anyways, I decided it was time to update on what is going on with my family. There might even be more than one blog post today.

S updates

S's last MRI revealed no "significant" changes in the size of her brain tumor. They say it is "tight" but it is not growing enough to intervene at this time. They just decided to add another medication to help with the nausea and headaches. It seems to be working, but I am just so tired of more and more medications. She is up to 8 pills a day - 4 in the morning and 4 at night. Although I am proud to say she can now swallow them whole (even all at one time) with a drink!

Back in the summer she was getting too thin. I was worried it was the Daytrana she was on for her severe ADHD. Her doctor at the time kept saying that was not it. He said I was skinny so she was too. There is one problem with that. I have always been skinny. S had always been around the 50-75th percentile. In one year she dropped from the 75th % to the 3rd %. I was more concerned about that drop than anything. So, we switched doctors. The new doc agreed with me that the % drop was not good and took her off Daytrana and put her on Straterra. In the past 6 months she has gained 15 pounds and 3 inches in height. I do not think that is a coincidence. Stimulants (such as Daytrana) have been shown to stunt growth. I think it was stunting her growth. Now, her hyperactivity is not as much under control with the Straterra but it is manageable (as long as you have patience with her). I had rather deal with a little residual hyperactivity than hurt her health.

Her grades have been pretty good. She really struggles with handwriting, but they say the location of the tumor along with her ADHD can cause that. They have also found that a decent percentage of people with neurofibromatosis struggle with handwriting. I never had that problem, so I was unaware of it until I did more research on the disorder. She is in occupational therapy though. She goes 1 hour 1 time a week. 1/3 of the time is spent working on sensory issues (such as her need to crash into everything and seek pressure), 1/3 is spent on increasing her attention span, and 1/3 is spent on handwriting. It seems to be helping, but it is a slow process.

Her next MRI is in March. They are putting a little more time in between. Something new they are doing in the study.

I just worry about her lack of friends sometimes. She still complains that some of the children will not play with her. She says they say she is "weird" or "too loud". She is loud at times, and I have tried to teach her how to know when she is getting too wound up. I just worry she will get incredibly depressed or something. Boys are actually a lot more willing to play with her than girls. However, she says she wants a friend that is a girl. A best friend. I feel so bad to hear her say that. I never lacked for a best friend. In fact, I usually had more than one. I just pray for her that she does find a best friend soon. I hate to think of her missing out on that. I am still in touch with many of the friends I had at her age. I would love for her to find a life long friend, or BFF as the kids say now days.

IE

What can I say about my little scholar. He is such a smart kid. He is getting more social. Eye contact is still not 100% there..but I have taught him how to look at someone's ear or nose so he is looking AT them...but not having to look at their eyes since that "hurts" him (his word). I always get the strangest looks from people when he starts talking. He has this same spill he gives every time we meet someone new. "Hi, I am I (his name) and I am 4 years old. I am almost 5 my birthday is in December. This is C (insert name). She is my little sister. She is 2 almost 3..but she cannot talk. We have a big sister, her name is Sannana (how he says S's name). She is 7 and in school. She talks too much." People then ask me, "How old is he again?". I reply that he is 4 going on 30. They usually say they can see that. :)

If he really likes someone he will go into a long spill about Angry Birds or Star Wars.

His meltdowns have gotten a lot better. He still has some eye and foot ticks though and likes to spin and run around in circles. He has finally figured out how to ride a tricycle though. This is big because he had some motor delays at birth and has had problems with left side neglect. After lots of prayers, therapy and us working with him at home though, this seems to be almost resolved!

C

Her next MRI is on Monday the 19th. We will meet with her oncologist after to talk about what was found. I am a little nervous, but I know that it is in His hands and things will work out as they should. I know that with apraxia things are slow moving and we have to be willing to do things on her time rather than our own.

She is still not saying many words, but she has gotten more vocal. She babbles a lot, it is just hard to understand her and sometimes impossible. She is able to communicate in nonverbal ways though..at least part of the time. We also just got an iPad that we are going to use with her. We put the ProloQuo2go application on it. We are going to use it with her in speech therapy and at home. The goal is not only that she learns to communicate pushing buttons on it, but might learn to emulate some of the speech.

She is now wearing braces on her feet. They are helping with her walking. She can even do a fast walk now..not quite a run (and it looks very clumsy) but she is getting there. She can go up and down stair now..slowly. She does not alternate feet though and has to be reminded to use her left leg.

We also have found out that one of her hips is very tight and one of her hips is very loose which is indicative of possible hip dysplasia.. Both are extremes either way. Her PT has suggested we have an X ray done. The doctor will have to order it. The findings were extreme enough to worry that at some point there might need to be surgical intervention. I am really hoping not. The poor kid is not catching any breaks lately. It worries me though, because

Still, with all they have going on, I know it could always be much much worse. I am just thankful for the health they do have, the fact John has a good job that not only provides us with wonderful insurance, but also the ability for me to be able to stay at home with the kids. They need me and I want to be there for them. I can always work later.

Book Review: "Cliques, Hicks, and Ugly Sticks" (Adolescent Fiction)

April Grace is a sixth grader living in the rural South in the mid-eighties. She is just starting junior high. One of her best friends has started a clique that excludes just about everyone - including her. Her sister is being a snot most of the time. Her mom isn't feeling well and it turns out that she is expecting a baby! So many changes so quickly for the heroine of the story! April Grace tells us her story in first person.

I actually liked (but not loved) the book. Of course, my only liking it is probably due to the fact I am in my 30s and not a tween, which is this book's intended audience. Still, I gave it 5 stars as I am sure I would have LOVED the book at that age level.

April Grace is mild mannered and sweet. She does not react overly to all the changes in her life. That is not to say she does not whine, or feel sorry for herself. It is evident that she does at times. However, that is a normal response to what she is going through. Still, she lets her Christianity shine through. (For instance, she is never mean to anyone but will stick up for people. She does not return the mean actions of her former friend, but chooses to try and be nice to her anyway or when she cannot bear to do that, she just walks away.) She is a good example for girls. My own girls are young for this book right now (ages 7 and 2), but it is a book I would let them read (or read to them) in the future.

One thing I enjoyed about the book was the setting. I did not grow up in the Ozarks, but I did grow up in the rural South. I would have been 10 when the story takes place, so only a grade or so behind April Grace. I remember trapper keepers, shoulder pads, the Reagan Administration, and so many other things the book mentions. I also LOVED the use of Southern slang in the book such as "Good Gravy". I remember hearing people say things like that. It was a nice trip back to the past.


I was given an e-book copy of this book for free in exchange for this honest review.

Book Review - "Heroes and VIllians of the Bible"

This ebook was provided to me free of charge by www.booksneeze.com in exchange for an honest review.





This book takes the stories of several people in the Bible, both good and naughty and presnets them along with the lesson they teach us in an easy to understand format, that is still directly from the scriptures.

Lessons include the stories of creation, Satan, Cain, Noah, Abraham, Joseph, Potiphar's wife, Jospeh forgiving his brothers, Miriam, Moses, Pharaoh, Rahab. Joshua, Gideon, Delilah, Ruth, Samuel, Goliath, Jezebel, Mordecai, Haman, Ester, Daniel, Jonah, Mary and the angel, Joseph, the shepherds, Herod, John the Baptist, Four Good Friends, the boy's lunch, The Good Samaritan, Herodias, the money changers, The Widow, the woman washing Jesus feet, Nicodemus, the Pharisees, Judas, Peter, Pilate, the soldiers at the cross, Jospeh of Arimatheia, the woman at the tomb, Jesus ascension, Steven, Philip and Saul/Paul.

I liked that this book not only included male examples, but female ones as well. Sometimes I think religious books (especially ones about being a hero) leave out girls. Most everything for girls seems to focus on being a "princess". This books gives examples of women who were not all frilly being wonderful women. I also liked that the book gave examples of behavior that is not consistent with how we want our children to act and explained why this behavior was and is undesirable and what can be done to avoid such behaviors.

I especially liked this quote from the story of Noah. It was explained that all Noah had done was to walk with God everyday and to do what God told him to do, even if it seemed silly. I think this quote is a good one for not only children, but adults as well, to remember:

"To be a hero for God, you don’t have to build an ark, take down a giant, or defeat an entire army. To be a mighty hero for God, you simply need to say, “Yes, Lord,” and walk with him every day."

Tama Fortner. Heroes & Villains of the Bible: Real Stories Actual Bible Text (Kindle Locations 425-427). Thomas Nelson.

Double Book Review - "Heaven is for Real" - Todd Burpo and "Heaven is for Real for Kids" (Sprituality/Afterlife)

I received this ebook from www.booksneeze.com for free in exchange for an honest review.

Little Colton Burpo became very sick when he was a very small child. There were several misdiagnosis that caused a bad situation to become even worse. The parents were brought to their knees in prayer as they asked others to pray for their little boy as well. In the end, Colton survived after a life-saving surgery. However, he came very close to death. After this ordeal, little by little he began to reveal to his parents things he had "seen" while he was so sick. These things included what appeared to be a trip to Heaven. His parents could have just brushed it off as a wonderful dream, but some of the things he told them were things that he could not have known about such as meeting a sister than he had never been told he had (his mom had a miscarriage before he was born).

I had read this once before. A person had lent it to me when we first found out my oldest had her brainstem tumor (which is stable at this time). It did give me comfort in that time of uncertainty. I am a believer, and I believe Heaven exists (Even if I am still not sure he really saw all he said he saw and that some of his memory is not really something he saw but things he heard in Bible school). It also gave me comfort that he saw the little girl his mom miscarried. I have had 2 miscarriages and I do believe our babies are in Heaven (or an intermittent paradise) waiting for us and I do look forward to meeting them someday.

I took away a couple of stars due to really liking the book, but not LOVING it like I do other books. It would not be fair for me to give a book I like the same amount of stars as a book I LOVE. Another reason is because sometimes I thought the book rambled a bit. There was a lot of information we did not need to tell this story (like the entire chapter on the bad things that happened to the dad..he did not have to go into such detail, in my opinion). Also because I am still not sure where I stand on how realistic this is. I believe he saw something..I just do not know what or why it would be given out in bits and pieces. I wonder if some of the responses came from him being unintentionally coaxed into saying something or if he overheard conversations he was not intended to hear (I know I did this as a child).

All in all though, it is a good read and will make you think. I would suggest for people to read it and form their own opinions.



Book 2 - "Heaven is for Real for Kids"

This is a companion book to the very successful book, "Heaven is for Real" by Todd Burpo. This book tells the same story the original book did, only in Colton's own words this time. It is told at a level that a child could understand. I would say children could really appreciate the book from ages 5-8 or so. I think the subject matter would be a little much for anyone under the age of 5 (unless it is a very mature for their age child).

I think my oldest, who is 7, will enjoy reading the book with me and then having a discussion about it. Before we do though, I am going to examine my own feelings, and that of my husband a little deeper. I think all parents should do that before they let their child read this book or read it to them. It is very thought provoking and I am sure it will raise questions from an inquisitive child, questions that do not have an easy answer.

As a former oncological/hospice nurse, I do believe people see things as they are dying. Some people seemed so at peace and even spoke of beautiful things. Others said hello to someone that the family said was long dead. Others just seemed to go to sleep. Others..well I honestly do not want to know what they were seeing...I'll leave it at that. I just still do not know though..was it the meds? Was it something else? It is something to think about.




Feel free to comment below. I am interested in what people think about this book.

Book Review - "Just In Case You Ever Wonder" - Max Lucado (Children's Faith)

I was given an e copy of this book in exchange for this honest review.

Max Lucado spins a lovely poem like book where a parent is telling his or her child how much the child is, always has been, and always will be loved not only by parents, but also by God as well. The book speaks of the parents always being there for the child and how someday they are promised a wonderful place called Heaven, where they will not only be together forever, but be in the presence of God as well.

I have 3 children. This book sums up so well how much I love them and what I want them to know about that. I never want to leave them wondering if their parents or God care. I want them to always know that no matter what, we are on their side..even if we are angry because they did something wrong..that does not mean the love went away.

I would recommend this book to anyone with small children. It is wonderful!

Book Review - "Thank You, God, for Blessing Me" - Max Lucado (Children's Prayer Book)

Mandatory Disclaimer - I received the ebook version of this book from www.booksneeze.com in exchange for an honest review.

This is a very cute little prayer book for children. Hermie the caterpillar is thanking God for all the good things in his life. The prayer is short, sweet, and to the point.

I liked this little book, as did my almost 3 year old. She smiled at the pastel colored pictures and seem to love what it said. (She has apraxia, so she is unable to "tell" me with words what she thought). She asked me to read it again (by pointing at it and then at herself). I think this is now a favorite! As always, Max Lucado does a wonderful job.

BookSneeze

You have seen some of my review posts of books. As I mentioned, I get these books for free. If you would like to do the same just go sign up here



I do not get anything for you signing up. I just thought you might like to check out some free books :)