Monday, October 31, 2011
Sunday, October 30, 2011
Saturday, October 29, 2011
(How many of you have that song stuck in your head now?)
This weekend while Daddy worked, the girls and I enjoyed some pre-Halloween festivities. We went to a Harvest Party at church this morning, and then this evening we went to trunk-or-treat at the church where Savannah goes to preschool. Now Mommy is exhausted! :)
Brooklyn totally has the right idea about trick-or-treating. Her little legs get tired very fast due to her low muscle tone, so she rode around in the stroller under a blanket holding open her bag for candy. It doesn't get much easier than that, folks!
I sure do love my girls!
We even found Emma, who Savannah has trick-or-treated with every year since they were old enough to do it. A fairy and a chicken the first year, winnie the pooh and snow white last year, this year they were a doctor and a colts cheerleader. Possible future professions???
Then we came home, warmed up with some homemade potato soup, and the girls checked out their loot. And have I mentioned that it isn't even Halloween yet?
Hope your weekend was just as sweet!
Friday, October 28, 2011
Happy Halloween from my favorite preschooler!
(standing next to pumpkins grown in our garden!)
I thought she looked cute in her $5 Walmart costume, but apparently she ditched it as soon as she got to school. Oh well. She still had lots of fun at her party!
We are thankful for her wonderful preschool that makes the various holidays so much fun!
Thursday, October 27, 2011
Once upon a time there was a girl who hated to wear bows in her hair, and her bangs started hanging in her eyes.
She had an awesome aunt who made her experience great.
And the finished project? Bangs in the front, but still got the curls in the back, while carefully avoiding the mullet situation.
Thanks, Aunt Em, for Brooklyn's first haircut!
Daddy: "I brought you a surprise. These flowers are for you."
Savannah: "Wow! For me? I love them! Thank you!"
Momma: "You need to give Daddy a big hug and put your flowers in water."
Savannah: "I don't want to put them in water! I want to be able to carry them in my wedding."
Momma: "Well, they won't last that long sweetie."
Savannah: "Daddy, will you buy me more flowers for my wedding?"
Daddy: "Sure I will."
Savannah: "Okay, and make sure they are pink. Thank you, thank you!"
Tuesday, October 25, 2011
I'm feeling exceptionally blessed tonight. And that hasn't happened a lot lately.
After a rather long day and a kind of depressing doctor appointment with little B, I headed to a support group meeting for special families. These are always encouraging to me and I really look forward to them each month. When I got there, I sat down next to the nurse that always deals with Brooklyn at the pediatric office and we chatted for a few minutes. Then a lady came in looking a little harried and frustrated, and we waved her over to sit with us. She kept telling me that she was a mess and she was sorry. She looked fine to me. Aren't we all a mess? I replied.
The meeting started and we enjoyed dinner and then went on to listen to a presentation on medicaid disability waivers. Brooklyn already has one of those, but I went anyway because I enjoy the camraderie. And I learned a few things too. Halfway through the presentation through, I noticed out of the corner of my eye that the lady next to me was shaking. I glanced over and she was sobbing. At this point, I wasn't sure what to do. I'm a huggy person, but I've come to realize that some people don't appreciate that all of the time. But I went with my instincts and leaned over to give her a big hug and a package of tissues I dug out from the bottom of my purse.
I asked her if she was okay, and she responded that they were about to lose their insurance, and that her daughter had special needs and she didn't know how she was going to pay her bills. She just kept crying and saying that these were the answers she needed. I left her my name and phone number and promised to help her with the application process if she needed it.
I went thinking I would enjoy a meal with people I shared things in common with. I had no idea that I would leave tremendously touched and thankful for a God who has always provided for my girl. I'm so incredibly blessed, and it is so easy to lose sight of that when the circumstances aren't so good (if I hear "brain damage" one more time this week I'm going to scream). But I'm learning (slowly) to find the positives even in the crazy moments... and I'm feeling very blessed.
Thursday, October 20, 2011
Thats the slogan of Cincinnati Childrens Hospital. Change the Outcome. And it is what we are continually hoping and striving for... a change in the outcome.
We headed back up to Cincinnati on Monday for Brooklyn to see her neurologist and developmental pediatrician on Tuesday. Since we have spent 12 days of the last month in the hospital, they wanted to see her since they are the managers of her care. I had high hopes that they would find a quick fix that had been overlooked, but I'm afraid that wasn't the answer we received.
However, we prayed for answers, and we did get some.
Brooklyn's muscle tone was noted to be significantly reduced, unfortunately most likely from the excessive seizures she suffered that sent her to the hospital the first time. Sigh. This causes her to have difficulty walking well and also difficulty swallowing.
She also was noted to have multiple sensory processing disorders. This may have been present all along and just now becoming apparent because of her age, and it may have been exacerbated from the seizures.
The first sensory disorder is oral defensiveness. It is characterized by a preference for soft or pureed foods, gagging with a change in textures, difficulty chewing or swallowing, frequent choking, and resistance to trying new foods. Obviously, Brooklyn didn't act this way previously, but these disorders commonly associated with special-needs children often become prevalent around 18 months of age. Also, losing tone and having issues swallowing doesn't help matters.
There is no quick fix for this, but it will involve feeding therapy, appointments with a nutritionist, and GI specialist, and occupational therapy. It is a behavioral thing, but not something that can really be helped. The change in textures and flavors legitmately feels extremely irritating to her because of her hypersensitivity in this way. She will also continue with pediasure 3 times per day.
The second sensory disorder is proprioceptive dysfunction. This is one we have seen in Brooklyn from birth. It is characterized by seeking out jumping, bumping, and crashing activities, stomping feet when walking, enjoying bearhugs, roughhousing, tackling/wrestling games, grinding teeth throughout the day, dragging objects, jumping off furniture, climbing, high pain tolerance, etc. I've often said that Brooklyn should've been a boy because she is so rough, so this one fit perfectly. My eyes got huge when they mentioned the symptoms because I've asked multiple medical professionals why Brookie always grinds her teeth so hard. This couldn't have been more descriptive of our girl.
There is no quick fix for this either, but PT and OT will help with the process.
The answers aren't easy to hear, and the road will be long and filled with lots of hard work, but Brooklyn has been a fighter from day one. If I was half as tough as she is, I would have it made. I know that she can do it, and hopefully with the help of her pediatrician, Cincinnati, and therapists, we can change the outcome.
Wednesday, October 19, 2011
This week, we had to take Miss B back up to see her friends at Cincinnati Children's Hospital. More about that later. But while we were there, we decided to have some family time and make some memories together.
Darren wanted to take the girls to Bass Pro (read: Darren wanted to go to Bass Pro). The girls loved the fish displays.
They did not love sleeping in a hotel. Don't let the picture fool you. There wasn't much sleeping going on.
Today we took the kids to EnterTRAINment Junction, an indoor train display that spans 80,000 square feet. It was pretty cool. My favorite part was watching Darren climb into Thomas the Train with the girls though.
They also had a Halloween display called Jack-O-Lantern Junction.
And the kids got to get candy bags and trick-or-treat.
And decorate a mini pumpkin.
And then there was an interactive play area, perfect for getting out the wiggles before the long car ride home.
And did I mention the car ride was long? Add rain and an hour delay in traffic... and things got a little bit crazy.
But everyone traveled very well and we arrived safely home this evening. Just in time to sleep in our own beds, hooray!
Sunday, October 16, 2011
Friday, October 14, 2011
Balancing acts are a delicate matter. Too much one way or too much the other, and everything goes bad. I've never been very good at balance. I either love something or I hate it. I'm either 100% committed, or I'm over it. I know what I want, and I'm determined to get it. My mother affectionately called me her strong-willed child. Sometimes thats a good thing. Other times it makes people want to run for cover. I think last week fell into the latter category.
I'm not very good at resting, waiting, or delegating. If I have something on my list, I want it done and checked off, effective immediately. Sometimes Darren and I argue, because when I ask him to do something, and he responds, "Sure, in a minute..." that translates to the same thing as "no" to me. I use the ATM at the bank to make deposits, because I don't like waiting for the teller to do it. That might make me sound extremely difficult, but allow me to defend myself a little bit.
When you give me a task, it will be completed. And probably in record time. I set imaginary deadlines for myself before the actual deadline, giving me a built-in cushion just in case something goes wrong. For example, I aced my midterm last week while Brooklyn was in the hospital, because I wrote it three weeks before that, edited it for a week, and then turned it in a week early. Just in case my kid was hospitalized again. Because you just never know what might happen. So sometimes being a bit overaggressive can be a good thing.
It all depends on the situation.
I would not want to be my child's doctor though.
I think the word patient is fitting, because when you are in a hospital, it requires a great deal of patience to be a patient. Or the mother of a patient. Or the doctor dealing with the mother of the patient. When labs are ordered, I want to know the results. When they say they are coming in to take out a feeding tube, and two hours later its still in there, I get a little stressed. When the doctor comes in and says the team is making rounds in 30 minutes and so I hold off on taking a shower, and then they don't appear until 132 minutes later... it doesn't sit well. And after 12 days in the hospital in the past month, I start to get a little bit mental.
And I might possibly have been a little less than gracious once or twice. Or daily.
I've been learning, or trying to learn, to wait. When I try to control things and manipulate things and understand things... it gets draining. And stressful. And I get exhausted. And edgy. I don't really think thats what God has in mind. I was reading yesterday in Isaiah 40:28-31, "Have you known? Have you heard? The everlasting God, the Lord, the Creator of the ends of the earth, doesn't faint or grow weary. There is no searching His understanding. He gives power to the faint and to them who have no might He increases strength...But they that wait on the Lord will renew their strength. They will mount up with wings as eagles. They will run and not grow weary, and they will walk and not faint."
That sounds a whole lot better than me trying to take everything into my own hands and then get stressed out when it doesn't go like how I want it to. And I'd even wager that the people around me might find me slightly more tolerable.
I got off balance. I tried so hard to be an advocate for my baby that I lost sight of waiting, patience, character development, and the God who is in control of everything. Deep breaths. I'm setting my eyes on Jesus... and not on my crazy circumstances. I think I'll be a lot calmer this way. You're welcome.
Thursday, October 13, 2011
Happy Birthday to my hubby, who has been extremely supportive through the many ups and downs of the past year. Always there with a listening ear and a solid hug and a joke to make me smile, I couldn't be more grateful. He has pulled super-dad duty multiple times lately and helped to keep me from completely losing it more times than I could count. Hard-working, dedicated, funny, athletic, forgiving, thoughtful, and smarter than I could ever hope to be... we are so thankful for you, Darren! Happy 26th Birthday (and thanks for celebrating it late this year because you had to spend your actual birthday in the hospital with our sick littlest)! We love you!
Wednesday, October 12, 2011
Resident: So we are going to discharge Brooklyn today.
Momma: Okay, we want to go home, but she hasn't gained any weight.
Resident: I'm sure she will when she gets home.
Momma: Okay, but if she doesn't start to improve, who do I call? Because she is still coughing and choking when she eats, and she is only eating 2-3 bites at each meal.
Resident: She might just have a tickle in her throat.
Momma: At every meal?
Resident: So, we are going to discharge you....
Momma: I really feel bad that I laid into that resident, because I think he was actually nice and it was just his counterparts that were being rude. He was just in the wrong place at the wrong time.
Daddy: Like... in your presence... anytime this week?
Momma: Why did you follow me out to the doctors' station?
Daddy: I was prepared to step in and defend them, if they needed it.
Momma: They're actions aren't defensible.
Daddy: I was thinking more along the lines of defending them from physical harm. I don't want to get sued. At the jail, we are trained to take a neutral stance between parties when a fight breaks out. Thats all I was prepared to do.
Doctor: Hi, who are you?
Savannah: I'm Savannah, I'm the big sister. I am not sick. Brooklyn is the sick kid. Not me. I feel fine. So do not come over here and nurse on me.
Friend: (Upon watching the team leave the hospital room....) Whoa! Thats intense! Its like you have your own Greys Anatomy, without all of the cute doctors!
Momma: (After the student nurse exited the room after trying 6 times to take Brooklyn's temperature in her ear without success...) Wow, I really don't think we are dealing with the A students today. I'm thinking they sent over the ones that needed extra credit!
Tuesday, October 11, 2011
My goodness, after 5 inpatient admissions in 18 months, I sure hope we are out of the hospital to stay for a while! While we didn't get too many answers, I do believe we exhausted the usefulness of our local hospital.
Miss Brooklyn gave us a scare when she entered the hospital with liver damage and refusing to eat and drink.
We've been at the hospital so much lately that she thinks she runs the place.
(And she might do better than most of their residents!)
But with a change in medications and an appetite stimulant, she started to eat very tiny bites, and that was enough to send us home!
Sunday, October 2, 2011
The last kind of regression I dealt with was multiple regression last spring semester in Research Methods II, and it was a pain in my rear. But this kind is worse. Statistical regression is a long process, but the answers are clean and crisp with exact probabilities. They tell you what choices you should make or what your chances are. I actually kind of grew to enjoy it. This I will never grow to enjoy.
As I type this with a splitting headache from stress, I realize that moments like this are without a doubt the most frustrating part of raising a child with special needs. One can nearly go mad from the questions in the quiet moments. Did I miss a sign? Did I do enough? Should I have been more insistent? Should I be doing something different now?
Brooklyn has been experiencing some regression. Since her bout in the hospital with the seizures, she has had trouble eating well. She puts forth the effort, but she chokes at nearly every meal. Her eyes water, her face turns red, and she vomits, usually on both of us. The poor girl has lost a couple pounds, and lucky for her she was already on the chunky side so no alarm bells are going off yet on her medical chart. But it sure isn't fun.
She also is having balance and coordination issues with walking. Her toes drag, making her trip quite frequently. Tonight she busted her lip, and that now matches her bruised forehead. And that happened while she was wearing her orthopedic shoes and being closely supervised. Its been a long week.
Overall, her muscle tone seems to be decreased, making her regress. The good news is that she has only had one seizure this week though.
Oddly enough, this all comes after seizures that are supposed to have a very low probability of inflicting any lasting damage. Although I am starting to think that perhaps when I hear the words low probability, I should just assume that it will indeed happen to Brooklyn, my sweet little child who had a low probability of being born early, a low probability of having a stroke in utero, a low probability of absence seizures, and a low probability of getting the chickenpox from the vaccine. You know what I mean?
I wonder if there is anything I should have done differently. I wish I had a medical degree. And a magic wand. And more coffee. Sigh.