Life with Two Special Needs Children
The purpose of this blog is to share our journey of raising our two boys with special needs. Our oldest has been diagnosed with Childhood Disintegrative Disorder, a rare form of Autism and Complex Partial Seizures. Our youngest has been diagnosed with Autism as well as developmental delays.
Friday, December 19, 2014
Sunday, December 7, 2014
Very Long Time, No Blogging!!!!
As most of you know, 2014 has not been kind to the Sines family. The good news is that we are surviving and starting to heal and come out of the dark fog that has been over our family for quite a long time. Personally, I am doing much better with my depression and am feeling like I can get back to my blogging and functioning like a normal person. There were many days that I wasn't so sure. I am so thankful for my wonderful husband and boys, who God gave me that made me push through the dark times, as well as my wonderful therapist who was a HUGE help in helping me work through my feelings. And most importantly for God for always being there for me and my family and not making us walk through this dark time alone! There's more work to do and will always be an empty place in our hearts, but for now things are moving forward.
I will be starting to blog again, but I will be blogging on a different platform and want you to join me there. I have set up my own domain at www.twospecialneedschildren.com. I will leave this open for now so that I make sure that everyone gets notice that I have moved my blog over to the new website.
There is a lot to update, especially on Caleb's health and I plan to work on that in the next few days. I just ask that you be patient with me as I learn this new blogging platform!
Cassandra
I will be starting to blog again, but I will be blogging on a different platform and want you to join me there. I have set up my own domain at www.twospecialneedschildren.com. I will leave this open for now so that I make sure that everyone gets notice that I have moved my blog over to the new website.
There is a lot to update, especially on Caleb's health and I plan to work on that in the next few days. I just ask that you be patient with me as I learn this new blogging platform!
Cassandra
Monday, September 15, 2014
Book Review: "Nowhere to Turn" by Lynette Eason
It's time for me to post another book review. This time I had the opportunity to read "Nowhere to Turn" by Lynette Eason, one of my newest favorite authors that I discovered after becoming a reviewer for Revell Books. "Nowhere to Turn" did not disappoint.
The main characters are Danielle Harding and her son Simon; Stuart Harding, Danielle's brother-in-law; and Adam Buchanan, hired to help Danielle Harding go into hiding.
The suspense in "Nowhere to Turn" began from the very first chapter and it doesn't stop. The organization used to help Danielle and Simon stay safe takes every precaution before taking them to a safe house, but the bad guys keep finding them and no one can figure it out. And there is the romance element as well between Danielle and Adam, that breaks through both their trust issues.
"Nowhere to Turn" was a gripping page turner because every time Adam and Operation Refuge moved Danielle and Simon they were continually found. It seemed like the bad guys were going to win and that just could not happen!
Adam had to reach out to someone within the FBI and hope he was one of the good guys to get some help. There was definite suspense as to whether the person Adam reached out to was on the right side or wrong side of the law. I have to say, I think "Nowhere to Turn" was the most suspenseful books by Ms. Eason of all of her books that I have read! I highly recommend it.
You can pick up a copy of the book at your local bookstore on your favorite online retailer. I was provided a copy of the book for my honest review.
Friday, July 25, 2014
Hospitalization 2014 - Part 2
So I am going to continue our saga regarding Caleb's hospitalization. If you didn't see the first part, you can see that here.
So Caleb had three nuprogen shots and his bone marrow responded and actually made too many nutrophils. By Monday, we were now seeing the infectious disease doctor to see if he had any recommendations about Caleb's incision and what to do about the vagal nerve stimulator. Finally, Caleb's neurosurgeon came in that evening while I was home taking a break. He didn't want to take the device out, especially since there wasn't certainty that there was infection on the device. The next plan was for the infectious disease doctor and the neurosurgeon to talk and try to come to a meeting of the minds.
Even after that discussion, the neurosurgeon was not intending on taking the device out because he wanted to talk to Caleb's neurologist who happened to be out of town that week.
The next day I sat down with the neurosurgeon, the hospitalist and our nurse and had a discussion about our options. Tony and I had decided to let the neurosurgeon talk to Caleb's neurologist and see what happens after he finishes all the antibiotics. The infectious disease doctor said he believes that if there is infection on the device he will get another infection in two to three months and then we will have to make the decision about whether or not to take out the device or put him on a low dose antibiotic daily. But all of this is also contingent on what is going on with his neutrophils.
You see, after we left the hospital on the 10th, we had an appointment with Caleb's pediatrician to follow up and recheck his labs. That day his nutrophil numbers looked really good. But Caleb had started having at least one episode of vomiting a day and he had never gotten his appetite back.
By Saturday, Caleb was unable to keep anything down, including his medicines. I ended up taking him to the ER and learned that his nutrophils had dropped 600+ points since Wednesday. The ER doctor called Caleb's pediatrician and she said to have him come in Monday and we would recheck everything again and see how he's doing. Caleb still wasn't eating, but he was at least drinking, even though he was still vomiting.
But by Tuesday, he wasn't even drinking and he was vomiting multiple times. I called the pediatrician and she told us to take him to the ER. We arrived at the ER at 7:00 p.m., was in a room at 2:00 a.m. and they admitted him at 5:00 a.m. What a long night.
So we've been here since Wednesday morning and they really haven't done much. We did try to get an upper GI, but Caleb refused to drink the contrast. Caleb's neurologist came in last night, after they finally added him as a consulting doctor - darn HIPPA laws!!!! And he adjusted Caleb's VNS down as he's thinking that might have been part of the vomiting problem. And today has been a much better day in that regard. He's eaten and drank and taken his medicine and kept it all down! Thank you, Jesus!!!!!!
Caleb's nutrophil numbers have continued to drop. We will need to follow up with the hematologist when we get out of the hospital, since he does not come to this hospital to see patients. Until then we will be sticking close to home with him to hopefully avoid him getting sick since he is immune-compromised. I just hope it doesn't take long to get an appointment. Tony and I have already talked about wanting to have a bone marrow biopsy done to see why his bone marrow keeps losing the nutrophils.
I'm praying hard that we can go home tomorrow. I'm really tired of being contained in this room!
So Caleb had three nuprogen shots and his bone marrow responded and actually made too many nutrophils. By Monday, we were now seeing the infectious disease doctor to see if he had any recommendations about Caleb's incision and what to do about the vagal nerve stimulator. Finally, Caleb's neurosurgeon came in that evening while I was home taking a break. He didn't want to take the device out, especially since there wasn't certainty that there was infection on the device. The next plan was for the infectious disease doctor and the neurosurgeon to talk and try to come to a meeting of the minds.
Even after that discussion, the neurosurgeon was not intending on taking the device out because he wanted to talk to Caleb's neurologist who happened to be out of town that week.
The next day I sat down with the neurosurgeon, the hospitalist and our nurse and had a discussion about our options. Tony and I had decided to let the neurosurgeon talk to Caleb's neurologist and see what happens after he finishes all the antibiotics. The infectious disease doctor said he believes that if there is infection on the device he will get another infection in two to three months and then we will have to make the decision about whether or not to take out the device or put him on a low dose antibiotic daily. But all of this is also contingent on what is going on with his neutrophils.
You see, after we left the hospital on the 10th, we had an appointment with Caleb's pediatrician to follow up and recheck his labs. That day his nutrophil numbers looked really good. But Caleb had started having at least one episode of vomiting a day and he had never gotten his appetite back.
By Saturday, Caleb was unable to keep anything down, including his medicines. I ended up taking him to the ER and learned that his nutrophils had dropped 600+ points since Wednesday. The ER doctor called Caleb's pediatrician and she said to have him come in Monday and we would recheck everything again and see how he's doing. Caleb still wasn't eating, but he was at least drinking, even though he was still vomiting.
But by Tuesday, he wasn't even drinking and he was vomiting multiple times. I called the pediatrician and she told us to take him to the ER. We arrived at the ER at 7:00 p.m., was in a room at 2:00 a.m. and they admitted him at 5:00 a.m. What a long night.
So we've been here since Wednesday morning and they really haven't done much. We did try to get an upper GI, but Caleb refused to drink the contrast. Caleb's neurologist came in last night, after they finally added him as a consulting doctor - darn HIPPA laws!!!! And he adjusted Caleb's VNS down as he's thinking that might have been part of the vomiting problem. And today has been a much better day in that regard. He's eaten and drank and taken his medicine and kept it all down! Thank you, Jesus!!!!!!
Caleb's nutrophil numbers have continued to drop. We will need to follow up with the hematologist when we get out of the hospital, since he does not come to this hospital to see patients. Until then we will be sticking close to home with him to hopefully avoid him getting sick since he is immune-compromised. I just hope it doesn't take long to get an appointment. Tony and I have already talked about wanting to have a bone marrow biopsy done to see why his bone marrow keeps losing the nutrophils.
I'm praying hard that we can go home tomorrow. I'm really tired of being contained in this room!
Thursday, July 24, 2014
Hospitalization 2014 - Part 1
So Caleb is on stint number two in the hospital this summer, well, technically I should say since July 2nd.
The first one came because he was running a fever of 102, his doctor ran labs, like we had been advised to do thre years ago (at least - more about that later) and learned that his neutrophils (the bacteria fighting cells that your bone marrow produces) was at ZERO! As soon as his pediatrician called and said she wanted to admit him I started rushing around packing up, getting someone lined up to watch Steven, and getting up to the hospital.
When we arrived at the hospital, Caleb was not happy that we were going to be staying. He hates the hospital! I knew we would have a battle with the ID bracelet, so I had intended to speak with the registrar about just letting me carry it upstairs and then sneaking it on him while he slept. However, God was faithful and merciful in the situation. He provided a HUGE blessing to me by a registrar named Vicki.
They wanted Caleb to wear a mask due to him having no neutrophils. I told them politely that he would not wear it. I was advised that it was for his protection. I told them I understood that, but due to his Autism, there was no way that he was going to wear it and I had bigger battles that needed to be fought rather than trying to fight him over wearing a mask, namely getting upstairs. This is where Vicki comes in.
I think she actualy remembered us from some of the times when we had the major problems with the ID bracelet in the past. (Now, I can add to my "You must be a special needs parent when you are recognized by sight by" list, because it is pretty sad when the registrars at the hospital remember you.) Vicki asked me if Caleb liked basketbll. I told her that he liked bowling. In fact, he was playing bowling on the iPad while all of his was going on. She told me that se would draw some bowling pins and a bowling ball on his ID bracelet and that maybe he would put it on if she did that. When they finally had his room upstairs, Vicki showed Caleb that she had drew two bowling pins and a bowling ball for him and asked if he would wear the bracelet. Much to my surprise he said, "Yeah." Vicki was my angel in disquise! I made sure that her supervisor was notified of her "outside of the box" thinking to help Caleb. She had told me that she had a grandson with Autism, so she completely understood that sometimes you had to think "outside of the box."
Those first few days were very scary. There were a lot of testing going on and they were testing for some very serious things. We had no idea what was going on, but everything came back negative. There had been talk about doing a bone marrow biopsy, but because his bone marrow responded to the neurpogen shots that they gave him to jump start his bone marrow to make the neutrophils, that was put on hold.
It was a very long holiday weekend because not a lot was done and there was still a lot of vomitting and not eating. We even tried bringing in his favorite foods - Chinese food and Chipotlee - and who knew tht Chipotle closed on the 4th of July - not this momma! And he wouldn't eat those. Those are things that he cannot get enough of while we are at home.
Since this has gotten pretty lengthy, I'm going to write more later and get this posted.
Monday, July 7, 2014
Book Review: "The Revealing" by Suzanne Woods Fisher
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I had the opportunity to take part in another one of Revell Book's Blog Tours. This one was for Suzanne Woods Fisher's "The Revealing." "The Revealing" is the third book in The Inn at Eagle Hill series. The first book is "The Letters" and the second book is "The Calling." (I reviewed about "The Calling" here.)
Here is the description of the book:
Naomi King, soft spoken, loyal, and easily overlooked, has a gift. She sees what others can’t see. Intuition, she calls it. Others in Stoney Ridge don’t know what to make of it and dismiss her hunches and inklings altogether.I enjoyed reading "The Revealing" and finding out how the story finished up, even though I had
When a young woman arrives at the Inn at Eagle Hill with a shocking secret about Tobe Schrock, Naomi fears the worst. She can’t ignore the feeling that something sinister is at work– something more than a threat to the tenuous love begun between her and Tobe.
As signs mount, they begin to point to Jake Hertzler, the elusive mastermind behind Schrock Investments’ downfall. Soon, events spiral hopelessly out of control and Naomi must decide whether to listen to her head or her heart.
In this riveting conclusion to The Inn at Eagle Hill series, bestselling author Suzanne Woods Fisher pulls out all the stops with a fast-paced tale of deception, revelation, and just the right dose of romance.
never read the first book in the series. It answered a lot of questions that were left unanswered after the second book.
There are many secrets in the book that are "revealed," including that Tobe Schrock knew more about his father's death. That was one of the many times where it was shown that forgiveness was shown to be a major theme throughout the storyline and was a major part of the faith of the main characters. Even when things are revealed that go against the Amish faith, there is still forgiveness.
At the end of the book Suzanne provides a list of discussion questions that you can review about the book. And Suzanne also provides a recipe for the Blueberry Lemon Squares from the Inn at Eagle Hill.
You can get a copy of "The Revealing" at your local bookstore or online retailer.
I was provided a complimentary copy of this book in return for a honest review.
Saturday, May 10, 2014
Book Review: "One Perfect Spring" by Irene Hannon
It's time for me to post another book review for Revell Books. I was so excited when I received the e-mail where I could request Irene Hannon's "One Perfect Spring." I have absolutely loved every single book of Ms. Hannon's that I have read and "One Perfect Spring" certainly did not disappoint.
The story starts with a philanthropic organization receiving a letter from a young girl wanting help finding a child that her next door neighbor had placed for adoption when the child was born. The young girl wanted help so that she could provide the information to her neighbor as a gift for her neighbors birthday.
The storyline is based around the lives of four main characters, all who are single, two because they have never married, one because of a divorce and one because of the death of their spouse. Seeing how all four of these individuals come to rely on each other and on God through this story is just amazing and incredible.
The character, Keith, that was assigned the task of tracking down the neighbor's son, has his reasons for not wanting to follow through, but those reasons are not revealed until later on in the book. Keith's boss cannot understand why he is having such a difficult time wanting to do the task. He just sees so much of himself in Keith and wants Keith to see that there is more to life than being a workaholic.
Claire, the single mom to the young girl who wrote the letter, is very independent due to her divorce and is trying everything she can to keep her heart guarded and be independent.
I read this book in a couple of days because I just could not put it down! It was that good!!!!! You can read an excerpt here. You can also see discussion questions here. (But, beware, there are spoilers if you look at the discussion questions!)
I highly recommend all of Irene Hannon's books and you can see a list of all of her books on her website, which you can find at http://www.irenehannon.com/.
I hope you'll take some time and read this book and that you'll enjoy it as much as I did!
The story starts with a philanthropic organization receiving a letter from a young girl wanting help finding a child that her next door neighbor had placed for adoption when the child was born. The young girl wanted help so that she could provide the information to her neighbor as a gift for her neighbors birthday.
The storyline is based around the lives of four main characters, all who are single, two because they have never married, one because of a divorce and one because of the death of their spouse. Seeing how all four of these individuals come to rely on each other and on God through this story is just amazing and incredible.
The character, Keith, that was assigned the task of tracking down the neighbor's son, has his reasons for not wanting to follow through, but those reasons are not revealed until later on in the book. Keith's boss cannot understand why he is having such a difficult time wanting to do the task. He just sees so much of himself in Keith and wants Keith to see that there is more to life than being a workaholic.
Claire, the single mom to the young girl who wrote the letter, is very independent due to her divorce and is trying everything she can to keep her heart guarded and be independent.
I read this book in a couple of days because I just could not put it down! It was that good!!!!! You can read an excerpt here. You can also see discussion questions here. (But, beware, there are spoilers if you look at the discussion questions!)
I highly recommend all of Irene Hannon's books and you can see a list of all of her books on her website, which you can find at http://www.irenehannon.com/.
I hope you'll take some time and read this book and that you'll enjoy it as much as I did!
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