8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children

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!

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

The Revealing.  

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.

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.
I enjoyed reading "The Revealing" and finding out how the story finished up, even though I had
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!


Monday, April 21, 2014

Caleb's Adoption: Meeting His Birthmother and the Match Meeting

Note:  I had written this post back in February around Caleb's birthday, but never published it.  I had started looking for pictures that we had taken on our match meeting trip and lo and behold I couldn't find them.  And then things got very crazy and out of control in our lives.  I talk about that in a different blog that I keep private and only allow individuals to read it with an invitation.  If you would like an invitation to read it,  please send me an e-mail.

I have written about various parts of Caleb's adoption over the last few years, kind of as the mood hits me and haven't ever really sat down and written the entire story down in full.  With everything that we have been through, I have been urged to write a book and one of my goals this year is to start working on it.

If you would like to read Caleb' adoption story in order, you can read it by clicking on the following links:

Caleb's Adoption: The Beginning

Caleb's Adoption:  Meeting Caleb's Birthmother and the Match Meeting

So after getting the initial phone call from Caleb's birthmother saying that we were the family she wanted to raise her son, we scurried to arrange a time to go and meet her and have what the agency called a "match meeting."  A "match meeting" is basically a meeting to discuss what type of contact the birthparents and family is going to have, who is going to name the child, who is going to be there when the child is born, who the child is going to be discharged to from the hospital, and on and on and on.

With Tony working as a contractor for a government agency, he would have a three day weekend, so President's Day Weekend was the perfect weekend to do it.  Our counselor was willing to work the holiday as well to get the match meeting done.  We were able to get a flight out on Friday afternoon where we didn't have to change planes, but did have one stop, but we didn't arrive into Sacramento until like 10 p.m. California time.  

We were able to get to our hotel and get some sleep.  The next morning we got up and headed out to meet Nova, Caleb's birthmother, at the maternity home where she was living at the time.  To say that we were nervous, would have been a HUGE understatement.  My stomach was in knots!!!!!

Nova had all sorts of things that she wanted us to do.  She wanted to take us to the home that she was in when she received our "Dear Birthmother" letter so that the residents there could meet us.  So that, I believe, was our first stop.  We then drove downtown and she showed us where the hospital was where she would go to when she went into labor.

Nova also wanted to go to the State Capitol building and show that to us.  We toured the inside and walked around the grounds.
 



Nova also wanted to show us Old Sacramento, so we spent some time there.  We took her out to lunch, did a lot of driving, a lot of finding her orange juice (she always kept telling us that the "baby is taking all the calcium from my bones!").  By the time it was time to take Nova back to the maternity home Tony and I were exhausted!

Sunday we stayed close to our hotel, since we did so much running around the day before.  We also had a very early day the next day for our meeting.

Spending the time with Nova, Tony and I spent the weekend very much out of our comfort zone. We did a lot of driving in areas of downtown Sacramento that we would not normally go to; walking into a maternity home, with the residents knowing that we were adoptive parents, as most of the residents there were planning on keeping their babies; spending a lot of time with someone who we had just met and were hoping that she would allow us to parent raise her unborn child. 

On Monday we picked Nova up and drove to our agency's office for the match meeting.  The meeting went well, as there really wasn't any surprises.  After the end of the meeting, we took Nova shopping and got her some clothes, took her back to the maternity home and went back to our hotel.  We had to be at the airport early the next morning, as our flight left at 5:30 in the morning to head back to Raleigh.  Fortunately, we were on the opposite route as our flight out, stop in Phoenix but didn't need to change plans and then on to Raleigh.


Caleb's Adoption: The Waiting

{Here's the story from when we received the call!}

On February 28th, I received a call  from Caleb's birthmother's friend saying that she was at the hospital in labor.  I called our counselor and she told us to start getting ready to travel.  I left work and began finishing our packing and changing our plane tickets to fly out the next day.  Later that afternoon, about 4:45, we received the phone call that our son was born.  We were so excited.  I could hardly sleep that night!  The next day we began the long flight to California.  I called the hospital and talked to our son's birthmom before we got on the plane.  She told us that the nurses said it would be okay for us to come to the hospital as soon as we got into town, even though it would not be until about 10 p.m. that we would even land at the airport. 

We did go straight to the hospital and this is the first time I was able to see our son, Caleb Alexander:




This is an absolutely horrible picture of me, seeing it was actually 1 a.m. North Carolina time and I'd spent seven hours on an airplane!
 
Caleb spent five days in the hospital and then was discharged to us.  His birthmother was resolved in her decision and signed all the necessary papers when she was asked to.  We even had to do it a second time due to the fact that there was some mental health questions and we found out that she needed to have a psychological exam performed before actually signing the papers.  So we had to hurry and get all of that accomplished.

We were told that it could take weeks to get the necessary ICPC paperwork approved, which meant we had to stay in California until that happened.  It so happened, that because our home study would have expired while we were in California and would need to get it updated as soon as possible, we were actually able to receive a conditional approval and leave California to go home to North Carolina within a week of Caleb being discharged from the hospital.

It was wonderful to be able to go home with our little boy!

So that is some of the major points of Caleb's adoption story!!!! There are other stories that are intertwined with this that I may share at other times of individuals who helped us during this very exciting, but stressful time in our lives.  God blessed us with some wonderful friends who blessed us in ways that we could never have imagined.


New Post on Private Blog

I have posted a long overdue update on my private blog (http://cassandrasprivatethoughts.blogspot.com/) for anyone who wants to read about what's been going on.  If you have not already received an invite, please send me and e-mail (cassandra{dot}sines@gmail{dot}com).


Sunday, February 9, 2014

Book Review: "You're Going to Be Okay," by Holley Gerth

Another book that caught my eye when I was looking through the books available in February to review was "You're Going to be Okay," by Holley Gerth.  You see, there has been a lot of tough stuff going on in our family which has caused my depression to kick into overdrive.  Even though I am currently on two different medications for that, there are still days that I wonder if I will make it through. 

Raising multiple special needs children is tough.  In fact, today was really emotionally draining for me.  While Caleb is almost chronologically 12, cognitively he is only 3.  I tell him the same thing every morning about NOT putting his socks and shoes on at the kitchen table and yet he doesn't seem to comprehend.  Then after church at a leadership luncheon that Tony and I had he had to go to the bathroom, so I took him.  i had to prompt him each step of the way.  It's those types things that emotionally drain me. 

And then to add in everything that is going on with Cassidy right now, it just really throws me over the edge.  So there really are days when I do not know if I am going to be okay!  So I jumped at the chance to read this book.

As I was reading the book the other day, Tony asked me, "So, are you going to be okay?"  And I was like, "Huh?"  I was so engrossed into the book that it took me a minute to realize what he was talking about!!!

Unfortunately, I only made it through half of the book before I had to start to write this review to meet the deadline.  But what I have read I have really liked.  Ms. Gerth writes in a way that is personable and like you are sitting across the table having a cup of hot chocolate.  As you are going through the chapters there are thought provoking questions to work through. 

I can't wait to finish working through the book so that I can find the joy, resilience and strength no matter what life brings -- and life surely brings a lot!!!!!