Sunday, June 19, 2011

What Anna Thinks Of Father's Day

It was a scream I hope to never hear again. It was about 3 am and the scream was piercing. I heard it and woke up and ran to check on Anna. She was sitting in the floor dazed and crying. I scooped her up and her only complaint was that her head hurt. She would not let me lay her back down so we slept for awhile in the recliner and then finally we moved back to my bed. She slept for a few hours and then woke up moaning. She wouldn't let me touch her arm and would point to her shoulder when I asked her where it hurt. She wouldn't move her left arm. I figured the arm was broken so I called Kenneth to see if he could come home and watch Gabe (because of course he was on duty- it is an unwritten thing that accidents will only happen when the spouse is on duty) while I took her to the ER. Carly had spent the night with a friend so she wasn't here. So off Anna and I went to the ER where they xrayed it and said she has a broken clavicle. They put her in a harness, wrote for some pain meds, and we were on our way. Happy Father's Day Honey- it's another medical bill to add to the pile.

We have been spending a lot of time at my friend Becky's pool lately (another plus to being in Denton). Carly is getting so brave and says she is ready to take up surfing. Gabe, on the other hand, would rather just lounge by the pool.

I may be biased but I think I have three of the most beautiful children on Earth!!

Friday, June 17, 2011

Understanding the Octomom and Other Useless Information

So on Facebook I said I would post about Anna's appointments about 3 days ago. Finally, here I am. It seems like I am running at least 3 days behind in everything these days.

Her first appointment was with the opthamologist. Much to my surprise, he said her eye was actually much better. It was looking worse to me but the measurements they took showed improvement. Her brain is still using that eye so that is good news. We are to not patch anymore for 3 months and then return to the clinic. If her eye is the same or better then we are done. If it is worse then she will need surgery because that means the patch was the only thing helping and she cannot wear a patch forever. I suppose I expected perfection from her eye and we will probably not ever get that. It still turns out frequently but she is able to correct it with a blink so they assure me that is a good sign. I do not really understand but have to trust that they know what they are doing. When it comes to eyes, I know very little.

The next appointment was for an EEG. She actually tolerated it pretty well. I took Carly with us this time and she was so good with Anna and actually seemed to help her stay calm. Anna will do anything for Carly. After the EEG we saw Dr Hernandez, the neurologist. He had not read the EEG yet so he didn't want to change her meds until he could read it. We discussed her behavior problems and he said that what I am describing is quite common in kids with CP and/or epilepsy. He referred us to a neuropsychologist for testing and recommendations about what to do. I called the intake coordinator today but was unable to reach anyone. I will start trying again on Monday. He said that the sooner we address the problems, the better off we will be. He was pretty much disgusted with the level of services Anna is receiving from the school district here. I guess I have just become somewhat complacent. I guess I need to get my "bitch suit" back out of the closet and fight for what she needs. I just know that we are in a small district that just doesn't have the resources or the volume of kids to really give Anna what she needs. And that brings me to my next topic.

Many things are making it glaringly obvious that this town is not where we need to or are supposed to be. I cannot go into all of it right now but one of the main things is the school district. I am not knocking the district. It does have its good points but it just isn't giving my kids what they need. We are looking to possibly move to Denton. They have an amazing special ed program there. It is also the town where I work which will eliminate my 45 mile (one way) commute to and from work. Kenneth would still be within his living requirement for his job. It would give me more time with the kids. There is private therapy there as well. I swore I would never move out of the country and back into the city but it looks like the time has come. All of the reasons we were staying here are pretty much gone. Please pray that once our house is on the market that it will sell quickly. It is a cute 3 bedroom/ 2 bathroom ranch style home on 5 acres. We (when I say we I really mean Kenneth) have done a lot of improvements on the land and the value of an acre has gone up quite a bit so I am hoping we can profit a little. I guess everyone hopes for that. It is not a plan set in stone just yet but probably will be soon.

My sister and her family are in town and we took the kids to NRH2O yesterday. It is a water park in North Richland Hills and I highly recommend it. It was the perfect size park with plenty to do for all sizes of children. You can bring your own food and drinks in or purchase theirs and they do not charge for parking. If you take a group of 10 or more then the tickets are only like $17. We stayed for about 5-6 hours and enjoyed every minute of it with the exception of the temporary closings of the kid area for floating turds. I do not recall as a child ever being kicked out of the kid area for a floating turd. It must be a common occurrence these days because the same thing happened when we were at a water park in Florida last summer. So my question is did kids not poop in the pool back then or were we just swimming along with the turds? Who knows. I was impressed that neither of my kids came home with a sunburn- especially Anna who is so fair complected. I, however, look like I was placed in an oven. I had started a new medicine last week and when it said on the bottle "May cause increased sun sensitivity," they were not kidding. I think this is the worst burn I have ever had.

The new medicine I started is called Plaquenil. Since I had Gabe I have been having joint pains. They have grown increasingly worse and to the point that I have difficulty even moving my toes in the morning due to pain and stiffness. I had been just taking Motrin and making it through but I just knew that this was not normal. I kept hoping it would just go away but it didn't. I finally went to the doctor. He says it is some connective tissue disease, most likely Lupus. I had a feeling this day would come due to strange lab results and some other weird things I have had in the past. He gave me the choice of Plaquenil, steroids, or both. I chose Plaquenil only. I hate steroids and will not use them until I absolutely cannot stand it anymore. He said when I get to that point to just call and he will put me on a 2 week round and see how that does. I am using more Motrin on the days I work and just trying to give the Plaquenil time to work. It can take a month or 2 to start seeing benefit from it. I hope it works. I am not happy about all of this but like I said, I was pretty sure something had been brewing for awhile.

I kept waiting for the day Gabe turned into a "bad baby" but I am finally starting to believe that day just isn't going to come. He is so sweet and is smiling and laughing all of the time. He is up to 11 pounds and I think has about 12 chins. He is sleeping consistently at least 10 hours at night. If all babies were like him then maybe I could understand the octomom. Having a baby like him is just the sweetest thing ever and I would love to always have one around. Don't fret though, this baby factory is closed for good...

Tuesday, June 7, 2011

What I'd Like You To Know About Us

I stumbled upon this from Bringing The Sunshine and really thought it was worth a repost! It puts into words how I feel.

Set Apart: A Primer for The Typical Folks

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank). You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?” You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious. Can you relate?

Both of my children are “differently-abled.” My daughter, Sarah Kate, has cerebral palsy. Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”. My son, Nathan, has Down syndrome. Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different. We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions. It gives me a chance to advocate for my child, and educate kids on disabilities. So if you’re ever around my differently-abled kids (or others), I want you to remember something: You don’t need to feel awkward. Feel free to ask questions about my children’s conditions and the progress they’re making. If you know us, invite us to do things – we’ll let you know if we can’t. Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.” Instead, look us right in the eye and flash us a big smile. Many people don’t take the time to look at our children and see the person instead of the diagnosis. And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don’t look away. Smile. Ask questions.

But that’s the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of. Actually, some of these we hate. Really hate. I’ve prepared a list for you of the Top 5 things I’d rather not hear.

1. “God only gives special children to special people. You must be really special.”

That’s really nice, and I appreciate the sentiment, but… What exactly makes me more special than another parent? I’m kinda lazy. I swear. Often. I avoid my daughter’s school field trips like the plague. Room mom? Never!

Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it’s because I was given special kids, not the other way around.

2. “You are so much stronger than me. I don’t know how you do it. I couldn’t handle it.”

Again, I realize it’s spoken with the best of intentions, but let me let you in on a little secret: when it comes to your babies, whatever it is, you handle it. The only other option is to crawl into the fetal position and pretend it’s not happening. But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.

3. “I’m so sorry”, or worse, The Pity Stare

Let me let you in on another secret: A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway). Everything’s a big deal in our house!

Yes, there are times that our life is tough. Yes, there are times we wish we were like you. But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.

The thing is, no one is perfect – we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can’t hide their weaknesses like the rest of us.

4. Critical statements about our parenting choices (includes dirty looks)

Sadly, there are a lot of less-than-stellar parents in the world. But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.

Occasionally, we do benefit from our specialness. But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.

5. “That’s so retarded!” or “What a retard!”

I’m sure that many people who use the r-word probably don’t ever consider how what they are saying affects people with intellectual disabilities, their families, and friends – I get that. When questioned, people will often say “…but I didn’t mean…” and I’m sure that’s true. The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.

If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it’s hurtful.

Differently-abled children (and their parents) have dreams, just like you do. We also need friends and love, just like you do. We are more like you than we are different.

Don’t let the tiny things that distinguish us, separate us.

Wednesday, June 1, 2011

A Camping We Will Go (Well, Sort Of)

Carly got a tent for her birthday last summer and has been wanting to go camping since. Shortly after her birthday was when I found out I was pregnant and was not really up for camping in a tent. I felt bad about it but I just couldn't do it. So then we had Gabe and now camping out somehwere in a tent still isn't really feasible right now. It isn't fair to Carly though to not get to camp so we decided we would make it happen for her. So we set up the yard. We have 5 acres and so there is plenty of room to pretend. We set up the tent, set up a little pool, and invited the neighbors over. The kids played in the pool for hours. Then we grilled burgers. When it got dark we started a little campfire and made s'mores. After that the boys went home and myself and the girls were going to spend the night in the tent. It was so hot and humid but I had made a promise and I was going to stick to it. Lucky for me, the girls got scared and we came in about midnight. My bed had not ever felt so good! It actually was a really fun day and I'm glad we were finally able to make "camping" happen. It was also so nice to be at the house because Gabe was ok outside for a little bit but then he was ready to go inside and sleep. We were able to just take the baby moinitor outside. I won't lie, indoor plumbing was nice too!

I called the neurologist yesterday about Anna. I was hoping for a check of her Tegretol level or something simple like that. Instead, he wants another EEG. Luckily it will only be a 1 hour one but still, getting her hooked up is the bad part. I was really mad for a little bit- not at the doctor but at the seizures themselves. Then I had to remember all of the good things the seizures brought us like eating and loosing the G button and so I got over my madness pretty quickly. I guess I have a love hate relationship with the seizures. I guess it will always be that way...