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?

Hospitals :(

Friday we went to the Children’s Hospital in Oakland to see an endocrinologist (hormone doctor). We had to skip school to make the appointment, but I feel it was worth it, because we need to make sure everything is going right inside that cute tiny body.  People with ONH usually have hormone problems along with vision impairment.  Most often it’s growth, cortisol, and thyroid. Yay…. 

Before we even see the doctor they take her blood pressure.  Apparently having her appendages squeezed is one of the worst experiences known to man.  They’ve tried to take it the last two times she’s been to the doctor. This time, same as last time, she screamed like they were pulling off her fingernails until they stopped, with no reading of course. Completely wasted effort that has just managed to put her on edge. So when they tried to take her height, she decided she didn’t want to lay down. *rolls eyes* What am I supposed to do? We proceeded to pin her down to the table and stretch her out to her full height.

The doctor told me that since she’s still growing in height, albeit slowly, and just barely growing in weight, it is more likely that she just isn’t getting enough calories.  With our picky little eater, this is hardly a surprise.  We’re being referred to a Nutritionist, who is going to tell me to make her eat more food. DUH! I know that already.  I’m just hoping they can help me find ways to do that.  Maggie eats what she wants, when she wants. 

Exhibit A: She likes apples. Some days she’ll eat two whole apples.  Most days she just screeches, “NIIII!!” (For unknown reasons, no has become ni lately, which I don’t get because the kid speaks in full sentences. My guess is because it causes that much more pain to my ears when its high pitched and right in my ear.)  Then she proceeds to eat chips. or crackers, or dry cereal or whatever other small similar snack food we can sneak past her lips.

Introducing a new food is next to impossible, unless it’s a new type of cracker.  She eats nothing but apple sauce off a spoon, so nothing gooey, sticky, wet, or gross in any way.  She drinks milk. All the time. She’s still on whole milk and we add Nesquik to get her as many calories as we can. She does like smoothies, so she’s getting some spinach and carrots and lots of fruits.  She’ll eat fruits on their own though.  Oh, and bacon. So she does get some protein. Other than that, I’m out of ideas. Anyone? Please?

Back to the Hospital experience…Turns out cortisol comes and goes in waves over the course of the day. So testing it at a random time during the day, we’re not going to know if it’s because it’s at a low point in its cycle, or if she’s got low levels.  We came back the next morning as soon as she woke up, when cortisol is supposed to be high, which turned out to be 6:30am. Yay!! (Feel the sarcasm radiating off that little word?)

They gave me a funky bag your supposed to put in their diaper to collect urine, she hated it, so we sat her on the potty for a bit.  A friend said kids usually go pee within the first 20 minutes of waking, so I figured this was the best chance to get some. 5 minutes of sitting on the floor next to her, singing some potty songs we’ve made up, SHE PEED!! That’s right! We got some pee in the cute little potty, which also meant she didn’t have to have a plastic bag in her diaper. Lots of happy people in our house.

Didn’t bother to change her out of jammies since we wanted her as comfortable as possible when they started stealing her blood.  It was Saturday morning, so Brandon was able to come with us for some moral support. Turns out though only one parent can be in the room with the kid. Brandon handed her right over and left with a, “Good luck.” Sigh. It’s sweet though, that he can’t handle her hurting.

The phlebotomist showed me how to hold her down so she would be unable to wiggle out.  Now, I’m a medical assistant. I’ve done shots and IVs and taken blood from my fellow classmates, then from patients when I worked doing my internship.  I’ve even given Maggie some of her vaccine shots. It’s sad when she cries, but she stops quickly, and just complains about the bandaids until I let her peel them off.  I thought I would be fine, no problem. I was so wrong.

She got out a butterfly needle, and I thought, “Oh that’s a good idea since they’re smaller, it’ll fit into her little veins.” When Maggie wears long sleeves, she does not like the sleeves to be pulled up at all, but of course we had to pull them up to get to her vein. So before we even get the tourniquet on she’s whining and pulling on her sleeve.  Tourniquet on, and she says, “All done with the sticker.” More whining and pulling on the sleeve. I guess the rubbery band reminded her of a sticker. Then I have her in full body lock and she gets poked. Screaming like she’d just been stabbed with a needle. Oh, wait. They took NINE vials of blood!!!  I didn’t think she had any left after that! It took 2 or 3 minutes to fill all the tubes.  She just cried and cried and she can talk now, and was asking me to make it stop, but I couldn’t. AHH! Gut wrenching sadness! I wanted to make her happy, make her stop crying, but I just had to hold her tight to me, sing to her, talk to her, try and soothe her anyway I could. She liked the singing, but then I would be distracted by another tube being filled and pause in my singing, so she would start screaming and struggling again.

Oh! It was so sad! I almost cried with her. Vials filled, its time for cotton and tape to stop the bleeding. My girl does not like bandaids. I pulled her sleeve down over the tape and tried to distract her. Strawberry milk did the trick for a while, and definitely helped calm her down.  Then we got out to Daddy and she was much better.  She convinced us to take the bandage off within 5 minutes though, with her whining and pulling on her sleeve.  Her dad is such a sucker. He’ll do anything for her.  It’s adorable.

Breakfast at Jack in the Box; she got a bottle of chocolate milk, so she was a happy girl.  Even ate some granola bar.  I was still really shaken up.

I love Maggie. I hope that in two months when we finally get to hear back what the results from these test are she’ll be ok. I know we can handle whatever comes our way.  The Lord does not give us anything we can’t handle. I know we can do it. We’re a strong, happy family. Lots of love, and we want for nothing. We are so blessed.

I don’t want to be the one holding her down next time. She’s precious.

Orientation and Mobility

Maggie has an Orientation and Mobility specialist! Laurie gave Maggie her first cane in November 2011.  It becomes more fun for Maggie every time she uses it. Laurie will come to the school sometimes to work with Maggie. This last week she was there, helping her learn her way around the play ground while Laura was spending time with Ella, which I appreciated very much.

They said that when I feel comfortable I can leave Maggie there and go out for two hours by myself while she’s at school.  After last week I don’t know if I will ever reach that level of comfort.  I’m not a particularly “protective” parent. I don’t care about sharing food or drinks or eating off the ground or dirty hands or the fact that Maggie falls ALL the time. I know she’ll just get right back up again.  I’m a pretty tough Mom, as a general rule, but when the other preschool class came out I wanted to grab my little girl, hold her close and protect her from those big mean seeing children.

I know I’ll get over that eventually, but right now, I just want her to stay little and safe and always happy. It’s funny, because I make her cry all the time, telling her she can’t have something or that it’s all gone or, heaven forbid, I LOST one of her toys. It’s not heart wrenching when I make her cry, I know it will help her become a better person, learning to be more patient with me. HA. That’s not something you think about often, your children needing to learn patience with you.  We always talk about how they try our patience, but really how annoying has it got to be that they’ve asked three times already and you still haven’t gotten off the couch to get them some goldfish? Oh, sorry.  Maybe that’s just me.

I love Maggie.  I know she’ll be okay.  I’m still going to hang around at school for awhile, because she’s never really been in a situation where there wasn’t an adult to come save her from the other children.

On Sunday, I talked with her Nursery leaders about making her spend more time around the other kids. Nursery is the class for children 18 months to 3 years old in our church.  They take the kids and have a structured, scheduled two hours of class; playtime, snack time, music time, and lesson time. It provides an opportunity for the kids to learn and have structure and be social while allowing the parents time to attend Sunday School. It’s a wonderful program, and I love Maggie’s leaders.  It’s easy to just pick her up when she’s crying and keep her away from the kids who take her toys or step of her little fingers, which are always on the floor, or who, GASP! touch her in passing.  She needs to become more accustomed to being touched roughly.  Kids are not very gentle, but I don’t know how to make her be okay with that. Sigh. It’ll all work out in the end.

Maggie and Laurie had a play date at the park on Monday.  They worked with her cane, walked in the sand, played on the swing and slide, and had an all around good time.  Laurie wants Maggie to just get used to her cane, to enjoy walking with it, and to realize that it can be really helpful for her.  Duran came with Laurie as well. He’s a pet ambassador!  Duran used to work as a guide dog, but has retired, and now Laurie gets to keep him and use him as an introduction to guide dogs. He was beautiful!  I don’t know if Maggie will end up with a guide dog, but I think it would be neat. 

Maggie really does love her cane. I love that she loves it.  It’s so adorable to see such a tiny little girl walking around with a cane.

Brandon’s helping her walk around the park.

She’s keeping the tip on the ground while we sing a song about her cane.We also got the opportunity to pet our neighbors boa constrictor! He brought the snake out in the front lawn to sun. I saw him, grabbed Maggie and ran across the street. I could not pass up the opportunity for my girl to pet a snake! She liked it too! She still talks about petting Eric’s snake two days later. “I pet Eric’s snake. It was smooth and scaly. It was round and long. I pet Eric’s snake!”

This girl loves the grass, and being outside. It’s a good thing.We’ll end with banana bread.  I have tried to get her to help me bake a few months back and she had no interest.  Yesterday, however, she helped me make banana bread!  We talked about all the things as we dumped them into the bowl.  She helped me turn on the mixer, and smash the bananas.  Once it was time to put them into the oven she was definitely bored, but it kept her attention all the way til then, so I was thrilled. Then when Brandon got home, not only did he get to eat warm banana bread, he got to hear all about how it’s made from Maggie.  This girl loves her daddy.  She cries when he leaves and squeals with joy when he comes home and LOVES to spend time with him. 

“Read the ABC book with Daddy! Jump on the trampoline with Daddy! Eat some carrots with Daddy!”

“With Mommy?”

“No, with DADDY!”

“Okay…”

Of course he’s just as gaga for her.  He is the best dad in the world.  He is so patient, and loving, and tolerant.  She can be crazy sometimes, but he’ll do anything for her.  And for me. He’s just a great guy all around. I don’t brag enough.  We are really lucky girls.