Wednesday, September 28, 2011

Tuesday, September 27, 2011

Brooklyn's Hospitalization

Many of you have asked about the details of Brooklyn's most recent hospitalization. Some of it is a bit of a blur for me, but I will try to journal what I can recall. Basically, Brooklyn presents a very challenging little medical case. The best guess that we have as to why she got so sick was that her body had just gotten her seizures under control and then she got a virus, and it lowered her seizure threshhold. Her little system couldn't handle fighting germs and seizures at the same time!

On Saturday, September 17, Brooklyn slept until after 9am. When she eventually woke up, her nose was gross and her lips were cracked and bleeding, presumably from breathing out of her mouth all night. I called the pediatrician and made a sick appointment. While we were waiting on her appointment, she had her first seizure in two weeks. It was about 30 seconds long. She also refused to eat breakfast. When we saw the pediatrician on call, he said he thought she had a virus, but that he was going to go ahead and give her an antibiotic just in case because he didn't want to risk her having more seizures.

She continued to have several more seizures throughout the day, and around 1pm she started to act strange. She still refused to eat, and she started walking sideways and dragging her left leg. I called the emergency neurologist at Cincinnati, and he said to go ahead and give her another dose of her anticonvulsant, and if she had another seizure after that, I needed to administer her injection and call an ambulance. The reason for the ambulance was that she had never before had that particular injection, and a common side effect can be difficulty breathing. Since they didn't know how she would handle it, precautions needed to be taken.

I was really nervous about that part. I usually handle Brooklyn's challenges fairly well, but I was a mess. I knew I needed to stop her seizures, but I was so scared that she would stop breathing and it would be a result of something I had done, and I wasn't sure I could handle that. She had another seizure, but I decided to wait just a little bit longer because I was so scared. Then she had another within five minutes. So, I called 911. The dispatcher told me that the rescue squad was on their way, and encouraged me to go ahead and follow the directions from the doctors. I did, and Brooklyn took it like a champ. Her seizures immediately stopped and her body relaxed. She laid very still on the couch and I carefully watched her breathing. And then she started laughing. The emergency room doctors later informed me that the injection hits the same receptor as alcohol, which explained her reaction.

In the meantime, I explained to Savannah that some doctors were coming to take Brooklyn to the hospital to help her. She informed me that it was fine as long as the doctors didn't take her by mistake. Then she ran and hid in her room.

The rescue squad arrived shortly and hooked Brooklyn up to a heart monitor and pulse ox, and strapped her to a child's stretcher. We began our bumpy ride to the hospital.

My mom came and followed us in her car with Savannah in the meantime. Darren was at work.

We spent the afternoon in the emergency room, where Brooklyn's seizures started back up again. They gave her several more doses of antivconvulsants (more than twice what she usually got at home) and drew some blood to make sure her levels weren't toxic. Brooklyn continued to refuse food, and then she threw up. They decided to start an IV and admit her overnight for observation.

Sunday morning looked better, but throughout the day she grew worse and continued to have seizures. She had 4 that day. She smelled like medicine and continued to refuse food and drink as well. They started IV fluids to keep her from getting dehydrated, and decided to keep her overnight again since she hadn't improved.

Darren worked Sunday also, but then was off during the week. He held down the fort with Savannah and did preschool carpool, school pictures, lunch bunch, show and tell, etc. He referred to himself as on "super dad duty." He did a good job!

On Monday, they called Cincinnati to consult with the neurologists. That was her worst day. She was barely awake all day. She laid in the bed, limp and lethargic. At one point, a team of seven doctors came in the room and she did not wake up throughout the exam, even with them shining a flashlight in her eyes. She continued to refuse to eat and drink. She had 5 seizures. They did an EEG to make sure she didn't have any ongoing electrical activity in her brain, but it was normal. That evening, they decided to try and give her a new anticonvulsant along with the other one to stop her seizures. However, she had a rare hyperactive reaction to the medicine and began to scream and then laugh hysterically. She also tried to jump out of the bed and hit her head against the rails, all while laughing. She didn't fall asleep until 1 am, after pulling her IV out. We told them at that point that medicine couldn't be given to her again. They agreed, and said they would probably transfer her to Cincinnati the next day.

Tuesday came and there was talk of a transfer, but it would have to be done by helicopter and it would be both costly and complicated. It was hard to justify since her vitals were stable and she wasn't considered critical. She had 6 seizures that day, however. So, after much debate, the doctors decided to consult with the doctors in Cincinnati and carry out their orders at our hospital. The decision was made to place her IV back in her arm and start high doses of the IV anticonvulsant that she had seemed to tolerate well. They warned us that it would probably down out her appetite again but it should last less than 24 hours. They started the IV dosage at about 6pm, and the evening was rough but things leveled out pretty quickly after that.

The doctors were really hopeful that Brooklyn could go home on Wednesday when she ate a granola bar for breakfast, but her stomach wasn't quite ready. She threw up and only had two wet diapers and refused any fluids by mouth. They gave us two bags of fluids through her IV. She only had one seizure, however. Late that evening, she ate a few bites of mashed potatoes and then went to sleep.

On Thursday, Brooklyn woke up acting much like her normal little self. She drank an entire carton of chocolate milk and ate a poptart and a few bites of banana. They discontinued the IV and she continued to do well and remain seizure-free, so we left the hospital at lunch time to come home after almost a week! What a long week it was!

We are very thankful for the great team of pediatricians at the hospital who really put in overtime to make sure that Brooklyn was well taken care of. We are also thankful for the rescue squad workers who were great with her. And of course for our wonderful friends who kept Momma supplied constantly with coffee and food, and brought more casseroles than we can possibly eat to our house upon our homecoming! Brooklyn sure is loved, and we couldn't handle this journey without you all!

Sunday, September 25, 2011

Unless You Are Beth Simmons.

It has become nearly an impossible task to get a good photo of both girls together.

Case and point? Saturday afternoon.

Nearly impossible. Unless you are Beth Simmons.

Friday, September 23, 2011

Welcome Home, Brooklyn!

Brooklyn showed signs of improvement and started acting like her chipper little self after six long days in the hospital. So, we had that IV taken out and headed home!

She waved goodbye and blew kisses to her nurses and doctors at the hospital, who she really bonded with, and we headed home. And that girl has been so glad to be in her own house! She's been running from one end to the other and chattering up a storm.

We sure are glad our sweet girl is feeling so much better!

Wednesday, September 21, 2011

Temporary Home

This is my temporary home...

its not where I belong... and rooms

I'm passing through...

...this is just a stop...

...on the way to where I'm going...

I'm not afraid because I know...

...this is my...

...temporary home.

We are hoping Little B can go home soon! Thanks for all of your prayers!

Monday, September 19, 2011

Sick Brooklyn

Brooklyn is currently in the hospital due to uncontrolled seizures. She also won't eat or drink. Prayers are appreciated!

Friday, September 16, 2011

Thursday, September 15, 2011

Date Forty-Nine: Plan B Date

The other night, we were going to have an at-home date. We were going to make dinner together, watch a little of the Office, and just relax. And then approximately 8 seconds after we put the kids to bed, the power went out. No kidding.

So, we got Chinese takeout, lit some candles, ate dinner and talked. It was what we like to call our Plan B date. It was kind of nice, although we were glad when the AC came back on five hours later! :)

Friday, September 9, 2011

Overheard at My House

Momma: What did you have for snack at school?
Savannah: I had pretzels and raisins, but not everybody did.
Momma: Why not?
Savannah: Well, there is a kid who has algae.
Momma: What?
Savannah: A boy. He has algae. So he brings his lunchbox with his own snacks.
Momma: He has allergies?
Savannah. Uhm, yes, Mom, that is what I just said. Are you listening?

Daddy: Savannah, grab your cup off the kitchen counter. Can you reach it?
Savannah: Dad! I'm four years old. How do you think a four year old couldn't reach her own cup? You were just jokin, right?

Savannah: Gram-B has polly pockets at her house because they used to be Lizzy's.
Momma: You're kidding! Cool!
Savannah: Mom, I don't kid. I am a kid.

Thursday, September 8, 2011

The Most Wonderful Time of the Year

Savannah started Pre-K today and she was so excited that maybe I should be offended. I guess staying home with Momma just got far too boring as the summer went on.

But Momma was ready for preschool to start too! ;) Savannah had orientation yesterday and her teacher seems very nice. Then she went to the doctor and got her big kid shots. I thought that would be quite dramatic, but she was very brave and only shed a tear or two. It was impressive. I guess she is growing up!

I think Brooklyn caught on to Sissy's enthusiasm and wanted to go too. But I'm so not ready for that one to be in preschool (although next year will come before I know it!).

Savannah was especially excited that one of her best little friends from last year, Emma, was in her class again this year.

We are thankful for a smooth start to another school year. And for such a fun little pre-kindergartener!

Wednesday, September 7, 2011

Tuesday, September 6, 2011

My name is Momma Bear. Hear me growl.

There has been a rant coming on, ya'll. I can't decide if the world has always been filled with so many ignorant people, or if this is a new epidemic. But having a special-needs child has allowed me to view the world in a new light, and sweet mercy, that light has exposed a truckload of ignorance. And that ignorance brings out what my mom always called the "Momma Bear Instinct." I might be really really nice, but mess with my cub, and you'll meet Momma Bear.

So I present... 10 things you really shouldn't say to the parent of a special-needs child.

1. She looks so normal. How do you want me to reply to that? I've toyed with responses... thank you? You should've seen her yesterday? Oh, you look normal today too. The reality of it is... a special-needs child may not fall into our realm of normal as far as meeting milestones, but she is quite extraordinary. And she doesn't have to look abnormal (whatever that is) to make our struggles real. You'd probably be surprised how many "normal" looking people have major things going on inside.

2. Don't worry, she'll catch up. Did you go to medical school? Because we see multiple therapists and doctors, and they quite frankly aren't sure if she'll ever "catch up." And, if by some miracle she does catch up, it will be the result of countless hours of prayer and therapy, not because she just got lucky, so please don't discount that.

3. Are you sure she isn't just ignoring you? Yes, I'm sure when my child doesn't respond to me she isn't ignoring me. She can't understand the language I speak most of the time. Do you know what it is like to be in a foreign country and not understand the people around you? That is how my child feels every. single. day. And I've never met an 18-month-old that could keep up a charade for their entire life... that would be some serious talent. Sometimes I feel like the mom on Mr. Holland's Opus... wanting to scream that I just want to speak to my child. Your child might be ignoring you, but my child does not have the ability to understand me.

4. Any statement that starts with, "Well my child can't even do...". People feel compelled to insist that my child must be doing great with her one accomplishment because their normal child can't even do that. It makes me want to shake them. And one day I might. Because for every one thing that my child can do that theirs can't.... there are 100 things their child can do that mine can't. And every accomplishment in this house is fought for... prayed for... paid for... cried for... begged for...and cheered for. Please don't act like we got lucky because your child can't even do that.

5. I'm sorry. I appreciate this sentiment more than the others, probably, but I don't need pity, and neither does my sweet child. She has to work harder than other children, and we have more to deal with than typical parents, but parenting is a big job no matter how you slice it... and we all have challenges. But please continue to treat me like your friend, and don't feel sorry for me every time you see me.

6. Your kid rules the house and might just need a spanking. Actually, my child doesn't have the capacity to understand a spanking, and so if I spanked her, she would look at me like why did you just smack me? And I personally cannot handle that. I'd rather repeat the words "sit down" 1000 times while people stare than have my child think I hit her for no apparent reason. And we do adapt our lives to help her, so maybe she rules the house. Wouldn't you do anything you could to help your child too, especially if they didn't understand the world they live in?

7. I know exactly what you are going through. Chances are, unless you also have a special-needs child, you don't. And having a kid that has been sick for a week or two doesn't qualify you either. Because part of the enormity of the job of raising a special-needs child is that its a job that never ends. Its hard now, and it will be hard forever, and you can't possibly understand the weight of that until you've carried it. You have NO idea what its like to wake up and think... is it PT or Speech today? Or to actually know your way around the hospital, and have the phone number of the hospital operator memorized. Or to have a button installed in your house that will call the ambulance by pushing it. Need I go on?

8. I didn't invite you because I figured you were too busy with all that you have going on. I don't know how you do what you do. My life is hectic and crazy, but it won't change anytime soon, and I'd really like to still be invited to go shopping or attend a playdate. I don't know how I do what I do either, but if you were in my shoes, and did all that stuff, you'd need to go out and buy cute shoes even more. So please still invite us...we might move slower, but we aren't contagious!

9. Do you have any other children? I'm not even sure what this implies, but yes, I do, and she is "normal" if that is what you are wondering. Will that be all?

10. Do you agree with the doctors, because doctors get it wrong all of the time. Yes, I do. And I wouldn't drive over 700 miles to a specialty hospital every three months if I didn't agree. Or give up two hours of each week for therapy. Or spend countless hours looking into resources and reading about treatment plans.

Now, because my own mother has taught me to always be positive, I also present 10 things you should say to parents of a special-needs child:

1. I made two casseroles for dinner today. What time can I bring one by for your family?

2. I don't know what to say, but I love you and your precious child.

3. Sounds like you are doing a great job.

4. You encourage me.

5. I know your child had an appointment today, how did it go?

6. How are you doing? (And really listen to the answer.)

7. Lets have a playdate. What works best for you guys?

8. Drop your other children off here on your way to the next doctor appointment.

9. Those people over there must think your child is gorgeous because they can't stop staring! (Or any other comment to stop the staring. I saw a funny t-shirt that says, "If you stare long enough, you'll see me do a trick.") We deal with the staring all of the time, and its nice when someone else has our back.

10. I'm praying for you guys.

Please, please be sensitive to those around you with special-needs children. They don't want your sympathy, but a little sensitivity never hurt anyone. A little insensitivity, on the other hand, can cause a world of damage. And maybe even a blog rant. ;)

Monday, September 5, 2011

Mission Accomplished

After six months of intense speech therapy, Brooklyn has accomplished her first goal! She can now correctly identify basic body parts on a daily basis. Click here to watch and see. Hooray!!! Good job, Brooklyn!!!

Saturday, September 3, 2011

Topsail Island Vacation 2011

Well, Irene threatened to ruin our long-awaited summer vacation, but she was unsuccessful. In fact, because our beach house was flooded when we arrived, we got upgraded... to the house where many interior scenes from the movie "Nights in Rodanthe" were filmed. Being the Nicholas Sparks fan that I am, this was a highlight for me.

The kids loved the beach, although Brooklyn does not do very well out of her home environment. (Read: Mommy and Brooklyn got up anywhere from 6-9 times each night.) The weather was perfect for the remainder of the week, and other than a few shingles missing and going without cable the first day, nobody would know Irene's fury had just passed through hours earlier.

We ate too much, played a lot, and came home with peeling noses. It was perfect.

So without further delay, I present just a few of the pictures taken during our fabulous vacation.