Tra-ma-tizing

Last week I got a very unexpected call from a growth hormone company, saying they were sending me free drugs before we’re even approved by insurance, so we can start now and don’t have to wait. But see, they’re confused. I want to wait. I do not want to poke my daughter with a needle every day. Still she proceeds to give me all the information I’ll need to know about the packages coming to our house, and the nurse that will be calling to come teach my husband and I how to properly stab our sweet daughter. Sigh. I’m not ready for this. Which no one takes into account, and these beauties show up at my door.  A literal backpack full of torture supplies. I went to my cousin’s wedding in Utah this weekend, and figured I’d be nice and not leave Brandon to do this all by himself the first couple of times it has to be done.  The nurse came yesterday after he got off work.  We got to practice how to swab everything with alcohol, attach the needle, and on a cute blue little pillow…. STAB.  She screamed and wiggled as soon as she smelled the alcohol, then I wiped her leg…not good. Brandon had to hold her down. It was done and over with quick enough, but really? Every day? The nurse said some people give it to their kids after they go to sleep. We’re going to try it tonight, see if she stays asleep.

So yesterday was…awful. It ended with the stabbing in the leg, but began with the dreaded taking of the blood pressure and temperature. She may scream louder at having her arm or leg “hugged” by the BP cuff than she does being poked by needles. We went up to Oakland Children’s Hospital to get a ACTH Stem test. Something with Cortisol levels. I don’t even know anymore what they are doing to her.  Luckily this test only lasted an hour.  The one we were scheduled for, though we talked the doctor out of it, was a 4 hour growth hormone stimulation test. No, thank you!

We went into the day hospital.  I see all these tiny kids hooked up to all sorts of machines with lots of tubes and IVs running everywhere. That scared me more than anything. But no one was screaming. They were calmly eating the lunches provided, or watching their own little TV, or playing the Playstations hooked up to their little TVs (crazy right?) So I felt a little better.

I don’t remember any other kid crying the whole time we were there. Maggie however, screamed about the BP, screamed about the thermometer, and when they put the name tag bracelet on her ankle, went off the edge. She eventually calmed down, but kept telling me, “I’m all done with the bracelet. Share it with Mommy! Please Wendy(the nurse) can I have the bracelet off?” Oh, it was so sad! Luckily I had Regina Spektor and a slinky.  Then they come strap her arm to a board so she cant move her wrist once the needle is in.  They took her blood, then gave her some medication, then we had to wait an hour and they took more blood.  Fingers crossed we don’t have to do that anytime soon. Oh, wait. She has to get blood drawn every 3-6 months while on growth hormone to make sure it’s working. Sigh. Hopefully she’ll get used to this soon, and it won’t be so traumatic every time.

We have a before, trying to pull off the bracelet, then trying to get the board off with her knee because we’d already discussed that peeling off the tape is a bad choice and would make it break. She calmed down quickly, but kept exploring the tape and tubes board and gauze with her left hand.  Last is the end, we had to keep it one long enough that she was for sure not bleeding anymore. I’m glad that’s over.
How am I going to do this every day?? Luckily we have a slinky right?

We ended our trip to the hospital with a stop by to see the Westovers! Wonderful friends from our church, who's twins were born on Friday, at 28 weeks! Glad they are doing well. Check out their story: http://www.kellywestover.com/

Growth Hormones and Preschool

I’m going to pre-apologize for the inevitable scatterbrained-ness this post will be. I’m confused and a little frustrated and the thoughts in my head refuse to sort themselves out into a solution. Rude.

Let’s just start with a cute picture. She insists there be a braid in her hair at all times. She likes to feel it.

So a few weeks ago, we went in to get the results of Maggie’s blood tests from the endocrinologist.  She’s a very nice doctor, told me that most everything was normal, except of course those things that were not. Sigh. So we have low levels of one type of growth hormone, which is apparently the one related to nutrition. So, great. Maggie’s picky eating is definitely exacerbating her general smallness.  And low Cortisol. We’re told that stress testing is the next step. Yay! Because the first time you stole my child’s blood wasn’t fun enough, let’s draw it out for 3 hours.

A few days later the doctor called back, and says that instead of putting Maggie through the 3 hour test (this still leaves the one hour cortisol stress test) we should just start her on growth hormone therapy. Really?? Instead of doing more testing to see if this is really what we should be doing, we’ll just do it? I told her I’d call her back. Talked to Brandon, he’s not a huge fan of it. Of course I’m not relishing the idea of stabbing Maggie with a needle every day ‘til she’s a teenager, but if she’s not growing…. So I talked to my dad (Internal Medicine doctor) and he recommends at least another MRI if not the test. Then we can compare it to the first MRI, see if there’s been any change in the pituitary. Sounds good to me! Though putting her under anesthesia was one of the hardest things ever! So I will be calling the doc tomorrow and setting that up.

We went to school on Friday. Maggie loves school. Or at least loves to talk about it.

me -“What do we do on Friday?”

Maggie-“We go to school! And cuddle Laura! And hear the ABC song! And walk in gravel!”

Once we get there….eh. It’s apparently not as thrilling as she makes it out to be when she talks about it. She’s really stubborn. She will only do the things she wants to do. She’ll try something new for about two seconds, usually screaming the whole time. And unless she immediately likes it, she screams until I stop making her try it. Laura brought out a bunch of magnets. COOL! I am just mesmerized by magnets. Maggie thought the “U” shaped one was neat for about 15 seconds. Longer than if she totally hated it, so that’s good. But then came the screaming because she wanted to listen to more music.

Meanwhile Ella (the other girl in her class-who is about a month younger) was just fascinated by the magnets. Sigh. Why can’t my child have that look of wonder and awe on her face? Why won’t she try new things? How is one teacher going to handle Maggie and a bunch of other kids? How is Maggie every going to be happy in school? And…..I started crying.

I’m such a baby.  Luckily Laura is tactful, understanding, and very helpful.  She’s going to set up a meeting with Maureen, Maggie’s possible preschool teacher for next year.  I know that talking with her will really help.  I’ll either begin to have faith in her, or not, and which ever way, at least I’ll better understand the situation I’ll be putting Maggie into come September.

Talking to a few other people since my break down in front of people (seriously, how embarrassing!?) I’ve realized that I’m putting Maggie in the “special” category, when she doesn't need to be.  Nope, she doesn’t want to share. Yes, she throws tantrums. Yes, she’s a picky eater (Come to find out all these 2 year olds I know that eat more than I do are not the regular. Sigh of relief). She the same as most other 2 year olds. She doesn’t want to do what Mom says. Neither does any other kid….ever.

I know she’ll be fine, We’ll just have to get used to the changes coming our way, and that the other kids are probably going to touch her.

I hope they’re nice.

Free Wednesday!

The first Wednesday of every month, a few museums in the area have free admission!!! My neighbor, Monica, and I have taken advantage of this deal as often possible since we found out.  We’ve been to the Exploratorium once and the Bay Area Discovery Museum twice now. Kim and Maggie have a lot of fun. I can only find pictures of the Discovery Museum … I think we took Monica’s camera to the Exploratorium. So come explore with us!

Two cute friends found some wonderful xylophones to play on.  Maggie found some bamboo, she liked the different segments. And that bottom right picture is of one of the coolest things I’ve ever seen. There are steel rods of varying heights jammed into a tire with a bar around the top to keep them in place.  Then there are different sized washers around each rod.  You pull the washers up the rods, as they fall back down they catch on the ridges of the rods and make a fantastic tinkling sound. Each rod has a different note, because of their different heights. I love it. I’ve always wanted to learn how to weld so that I can make things like that.These frogs were fun for the girls. Kim (neighbor), Katelyn (Maggie’s second cousin), and Maggie stepped on the black plungers, which would then pump air out the mouths of the frogs in the tubes, making super fun bubbles!There are just a ton of different activities for the kids. (clockwise from the top right) There are huge foam blocks for building, a pirate ship where you can dig for treasure in the sand, a gravel pit with hand operating cranes to move the gravel, and a rain stick attached to a lazy susan, which Maggie LOVED spinning.There’s a boat room where you learn about the effects of water currents and air flow on boats.  It’s meant for older kids, but she really enjoyed feeling the wind from the wind machine.  Not much interest in the flags, but maybe she will next time.Again, just the coolest stuff! A HUGE log, with room to climb through, the coolest little house/maze made of growing vines, a fun “spider web” to climb in, a canoe carved from a tree, some matching games where they just had fun sitting at a little table their size, these great “blocks” made from branches cut into small pieces, and the last ones are my favorite, and Maggie’s.  There is a toddler area, where you have to be under 42 inches to go in so there are no big kids running over the little ones. They have an area with different types of floor. In the bottom left and middle pictures you can see two of the textures.  The black is just a bunch of little rubber bumps, like those Adidas sandals that were cool when I was in high school, the blue in the background is some memory foam, and there was also some foamy scratchy stuff, a lot like a dish scrubber.In the toddler area, there’s a sweet little river that descends height so the older kids can play in a different spot from the younger, complete with fish and frogs to play with and water proof aprons to save their clothes!  As you can tell, there’s some fun splashing involved.We really love taking advantage of the free days at the museums in our area. You should find out if they do it in yours. And here’s to hoping orange juice will save Maggie from my strep throat.

Eggs that go *BEEP*

Easter is a wonderful time of year! The weather is finally starting to get beautiful, flowers blooming and grass is for-reals-green. We had the wonderful opportunity to attend an Easter egg hunt put on by a local family. The son, Daniel, is now 16 years old and was in charge of the activities this year.  His family has been hosting this at their beautiful home since he was 3 years old.  We were able to meet a lot of the local blind children and their families.  A few of the teachers of the kids came as well.  It was really so neat to see so many different people with a similar obstacle in their lives. 

We met one couple that were very similar in situation to us, with the most adorable little boy.  He was almost 2 years old and having a lot of the same problems (like not wanting to walk) that Maggie did at his age.  It was great to be able to comfort them, knowing that he’ll move past it.  We were then able to receive the similar advice from people with children older than Maggie.  She’ll get used to it, or get over it, or just deal with it.  Most of them are picky eaters. Sigh. I guess that’s just something we’ll have to deal with.

The egg hunt was super neat!  They had these small electronic devices that beep when you plug in a battery, inside a normal plastic egg.  A few of the parents helped hide them around the yard, then they let the kids loose to go find them. It was so neat to watch the older ones run off in search of eggs. There were a couple eggs that talked as well.  “Come find me! I’m over here!”  Maggie was able to find one near the fence pretty quickly, and she was satisfied.  Once she had an egg she was happy. 

Watching the other kids was just a treat. One girl, maybe 10 years old, walked close by us near the end of the hunt and told us she’d found 14 eggs, then asked us to point her in the direction of more.  Her dad had put a blindfold on her younger sister so that she had the same advantage as the other kids in finding the eggs. It was really cool to watch the blind sister help her seeing sister find eggs.

One of my favorite things was having Maggie show her cane to the older children.  It’s the smallest cane that Laurie (Orientation and Mobility specialist) has ever made.  They were all so surprised at how small her cane is!  One boy, about 7 years old kept saying, “Wow, mine is much bigger than this. It’s just so small!”  Here’s Laurie and Maggie.

Maggie and Daddy.  They had a great little play structure in their yard. It was the perfect place to hide the eggs for the older kids.

Easter Sunday we had a little get together at our house.  Brandon’s cousin and his family came over, as well as our neighbors.  We love our little one. She’s just so sweet!We had a little egg hunt in the yard for the girls; 2, 2 1/2 and 3 years old.  Maggie found 2 eggs this time!  I left one out after packing up all the Easter décor.  Maggie still asks me to hide it for her to find. She really enjoys it.  They’re really just small maracas anyway.

Family fun times!

So my sister Alecia made the awesome decision to serve a mission for our church. She will be gone for a year and a half to Indiana to teach people the joy of the gospel.  I decided I wanted to see her again before she left, so Maggie and I took a trip to Utah.  Maggie did really great on the plane.  We talked about it a lot the few days before we left. So going was neat, she used her cane to feel all the different things in the airport and a bit of the airplane.  She fell asleep about half way through the flight, so that made it even easier.

We were able to spend time with a lot of family, playing games and chatting.  Maggie loves her aunts, I think mostly because they love her so much.  I honestly didn’t see my daughter for the couple days we were there unless she was screaming or sleeping.  We got to go to the fantastic dinosaur museum at Thanksgiving Pointe.  Maggie had a great time, especially digging for dinosaur bones in the sand.  Here she was picking it up and sprinkling it on her knee and laughing. She’s so funny! 

We finally got a picture with her and her Jeffery Great Grandparents.  They are always so kind to let us stay with them when we come visit.  Someday I’ll grow up to be like them.  Totally selfless and very family oriented.After Alecia was seen off to the Missionary Training Center, my family drove Maggie and I back home.  The kids are all on spring break, so they decided to finish it off in California; a good choice in my opinion.  We stopped at Sutter’s Mill and did a bit of panning for gold.  This is a huge passion for my dad, so he had a lot of fun.  I even found a few tiny flakes!  Maggie just had a fabulous time walking around in the gravel.  She loves the sound, and picking up the small rocks.Once home we did some touring of the city.  Stopping at the beach, crossing the Golden Gate Bridge, and even venturing into a submarine!

All in all, Maggie was glad to be home again, and very glad to spend time with her Grandma Jeffery.I love family.

We are blessed

So we're at the park. Maggie is having a session with Laurie, her orientation and mobility specialist. It's been great! We've talked about all the different things we're walking on - grass, gravel, cement, finding twigs and dandelions. Lots of fun. Laurie brought out an adult cane so Maggie could hear her tapping and follow after. A park maintenance man is driving through and asks us to move off the trail so he can get out. No biggy, we move to the grass. He parks the truck, and come asks if we're doing a lesson. Why yes, we are.

Now I really like it when people show interest in Maggie and her adorable cane and want to know more. I like helping people to understand that not everyone is made the same, and it's ok. That they don't need to treat Maggie any different, and that she's super smart. Also, she's blind, not deaf. You don't need to yell for her to understand. That's a different topic though.

This man whispers, "Is she blind?" Now, she is walking with her cane, and Laurie has a cane as well. What else would be happening?

Eyes rolling in my mind, "Yes, she is."

"Wow!" He mouths. "Can I ask an off the wall question?"

"Sure." I'm expecting: how did this happen or can they fix it, but no, he wants to take a picture.

He's asking Laurie, who points to me, and explains that I'm the mom, it's up to me. Having never been asked this, I hesitantly say yes. Maybe he's just a picture person, someone who tries to document everything he sees. She's cute, and it's different to see someone so little with a cane.

Then he proceeds to tell me, "I want to put it on my wall at home, to remind my family that it could be worse."

...

WHAT???? EXCUSE ME?!?

Things are not worse for us. Things are awesome for us! Things are sometimes a little bit difficult, but they are not worse. We have happiness and health; family and friends that love us. We have a church that teaches that we are here for a reason, that life on Earth is a part of God’s plan, and that we can find happiness if we only look for it.  I’m married to my best friend.  He has a great job that he loves, and makes enough money that I am able to stay home to raise our daughter. How lucky is that? We have incredible support from the schools in this area, giving Maggie everything she needs to learn how to understand and navigate this crazy, scary world.  Best of all, we have Maggie.  She is so bright and happy, so full of joy.  She is interested in everything, wants to learn more and more, to see how much information she can shove in that cute little head.  From what I can see, she knows no limits. She’s so brave, so loving. We love her so much. How could you not? Look at this face! After getting over my shock, I said to that man, “It’s not worse, Maggie shows us how to make the best of everything.  She’s so happy.”

I’m satisfied in my response, I guess.  I just wanted to let him know we don’t think of it as worse. I wanted to tell him everything I just said, but I don’t have the courage to confront people in that way.  He stayed for a few more minutes, watching and talking with Maggie. She walked over to him and just started talking away, then shook his hand when he left. She is teaching me already.  I was so frustrated with him, I needed to just let it go.

This wasn’t the first time someone said something stupid, and it wont be the last. People say things not meaning anything negative or harmful, those don’t hurt, they usually just make me smile a little. It’s when people tell me its so sad, so heartbreaking, so terrible. It’s not. Why would you say that? Is that how you want me to think of it? I’m not ever going to. We are a happy group. To quote a friend, don’t poop in my cheerios. ;)

Forgive and forget. Move on, and remember the happiness and blessings.

Scrapes and Screeching

A few weeks ago at school Maggie was walking in the little playground, just 10 feet from me. I thought, “She’s getting near the edge, I’ll go get her soon so she doesn’t fall.” And in one quick moment, she had turned toward the edge, run to it, flipped over it and landed face first on the concrete. Yay! Tears and crying with guilt all around; the result, a scraped up face.

 

As you can tell, she’s really torn up about it. :)The day after. Not so bad. Not much left of the forehead. It scabbed on her nose a few days after but we’re all good now (three weeks later) It’s amazing how something so little can get my heart pumping so quickly!

So I’m pretty sure she loves the sound of herself screeching.  It’s the one sound Brandon won’t tolerate coming out of our kids.  We’ve been working on ways to convince her to stop.  She knows we don’t like it. Things she says after she’s done it, “Screeching is a bad choice.” and “What’s the rule with shreeking? Don’t do it.” And my all time favorite, to the song – “If you’re happy and you know it, no more shreeking, no more shreeking.”  We’ve been putting her in time out if she goes overboard, which is a good motivator, because she hates it. 

I learned from my friend Monica, to make her stand with her hands against a wall.  This way she can’t be holding any toys, has to stay standing and for seeing kids, they can’t see what’s going on around them and get distracted.  It’s very effective. I heard recently though that you shouldn’t put your children in time out because it’s an unrelated consequence to their action. Sigh. So what is a related consequence to not wanting to go outside or come back inside if she’s out? Or really to any change happening to her situation.

How do you discipline your children?