Wednesday, October 31, 2012
A small part of me has been sad because Maggie liked to listen to songs more than have them sung to her or to sing them herself. I really love singing, so she was subjected to it anyway, even though she would sometimes protest the whole time. On Sunday night we were winding down and getting ready for bed. She was sitting on the couch talking with Brandon and asks him what song they should sing together. They proceed to spend the next 15 minutes or so singing every song Brandon could think of. What a proud daddy! They were adorable!!! Now she wants us to sing with her all the time! I love it! I love singing in the car with her as we drive to school. Which she is absolutely loving, by the way.
So here we are, her laying on my lap as we sing "I'm a mean old witch" together on the front lawn. We're happy. And singing. Which makes us more happy!
Tuesday, September 25, 2012
It's been about 2 weeks now that Maggie has been going to school. Can I just say WOW!?! What a drastic change. Those first couple days were so SO hard for me. The teachers said each day that she was crying less and less, but she still was! I think it was the 3rd day, I just came home from dropping her off and curled up in my bed for half an hour trying to figure out if this was the right thing for Maggie. I decided to just keep trying for at least a little bit longer.
Each time I went to pick her up the news was better and better. The teachers were getting to know her quirks while she was learning the routine and what is expected of her. The last few days she's had only a couple small fits (no full on tantrums like the first few days). Thursday they said she didn't cry at all until I came to pick her up and told her we needed to go home. She wanted to stay! What a 180. I am so grateful! She is learning a lot about how to interact with people and I know this is going to be a great experience for her.
As my neighbor said when I told her things were going so much better, "You need to give that girl more credit." She's right, I do. Maggie is an amazing girl, she can and will learn. She can do it! I can do it!
(Wrote the beginning of this post a little over a week ago….oops) So now it’s been almost a month. I couldn’t be happier with how she’s doing in school! She loves her teachers, she tolerates the kids. Her teacher said that today she explored the classroom by herself for the first time. They found a wake of destruction in her path – broken toy, box of tissues almost empty, and chairs pulled away from one of the tables. But they were really happy that she was comfortable enough to move around the room on her own. She really loves going to school.
Potty training is…ok. She does a great job when we’re out and about, but for some reason when we’re at home all day she just gets too busy playing and won’t stop for a potty break until she’s already wet her panties a little. Sigh. Some days we’ll go through 6 pairs and then she’ll make it 2 days without an accident. I guess it’s just all about practice and reinforcement.
We went to the doctor, just for a normal check up. Maggie has gained 2.5 pounds in the last 3 months! That’s more than whole year before that! We’re really excited that the growth hormone seems to be working. She still needs to get another blood test to make sure they don’t need to switch the dosage or anything. Her pediatrician says it’s a good idea that we’re doing the hormones, because her projected height without them is 4’9”. HAHA!!! She’d be a blind midget…. Sigh. With them she’ll probably be around 5’2”. I’ll take it!
One of Maggie’s favorite activities is jumping. On the trampoline, the bed, really anything bouncy. I love how her hair poofs out on the way down. So cute!And really, could she get more happy? I submit that she cannot.
Tuesday, September 4, 2012
So we started off this whole blog with a first day of school. That was technically a first day of play group that happened to take place in what is now her classroom. I stayed with her the whole 2 hours as we played with our friend Ella and her little sister Jenna. Now it’s for real. Kind of. She’s started pre preschool! It’s still so funny in my brain. Who sends their 3 year old to school? I do. And I’m excited about it.
The day started off ok. I’m really incapable of being on time to almost anything, so we were a couple minutes late. I’m really going to work on that. Promise. I wasn’t the only one late though, and they were running behind schedule anyway. We first stopped in the front yard to take some pictures before we headed out. Even that was a bit of a trial. But I had to document the adorable backpack I made for her the night before. I went looking at Target for one, but she’s so tiny, even the littlest ones would have made her tip over.
I stayed for the first half hour or so, just watching. They start class by letting the kids play with toys first, to let the adjust to just being in the classroom, then they move to “circle time” where they begin learning letters and sounds and other fun pre preschool things. :)
And lets add in some explanation here: Maggie is in a class of 7 kids that are all special needs. I’m not really sure what they’re needs are, but Ella is in her class. She is visually impaired and was in playgroup with Maggie earlier in the year. One boy has some physical disabilities, walks with crutches or a walker. The others are speech delayed or have some level of autism, I believe. There is a teacher and an aid to help with just these 7 kids. That makes me so happy! If they are anything like Maggie, they each need reassurance at every change in routine and all seem to be pretty stubborn. So within the small amount of time I was there they moved from playing to circle time. One kid just screamed when told he had to put the blocks away and come sit with the rest of the class. He set off two other kids who are apparently sympathy criers, and this set Maggie on edge too. She didn’t want to sit in the little chairs, but eventually was ok with it. Then they sang a welcome song and that made her very happy.
Move over to singing time, and there’s a whole new set of problems. Maggie didn’t want to sit on the floor. Sigh. I decided to leave at that point. They obviously know how to handle crying kids. I got a text about an hour and a half into school asking if I’d bring milk when I come to get her. Another sigh. That means things are not going very well. I show up and she is asleep in Laura’s arms, has been for half an hour, but is still making the little sobbing sounds. Yup, that means she cried so hard and for so long that she fell asleep and was still calming down half an hour later. I proudly report that I did not burst into tears, even though I really wanted to. I got her stuff and took her from Laura. She woke up during the transfer and was very glad it was me. She drank some milk and when I asked her what she did at school, she said, “I cried. I was sad.” Heart tearing apart! What am I doing to my little girl?!? I talked with her teachers for a little bit and though they were being very reassuring that things would get better and that it wasn’t all that bad, I could tell that it had been a hard day for everyone. We went home and she got all the things that bring her comfort and as we started talking more about school, she didn’t say anything negative. It was all about the play dough, which I know she didn’t touch. Sitting at the art table, where she wouldn’t do the painting. Drinking apple juice, which I’m sure is about the time when Laura texted me to bring milk. Reading stories, they told me she wouldn’t sit down. She seemed to be remembering everything in a very positive light. This was very calming for me.
Today was her second day. The morning was rushed again. I had to actually wake her up to make sure she had time to eat before we left. She was only reluctant to go because she wanted to stay in her high chair, one of her very favorite spots to be. We were a bit late again, I swear I’ll get better, but came in just as they were heading to circle time. She was eager to join in and talk about the sound the letter P makes. So I left, went to sewing group at my church and worked on a quilt for my cousin. I came about 10 minutes early to get her. They are out on the playground for the last 15 minutes or so of school. I saw her talking with Lauri, her orientation and mobility specialist, and could see she wasn’t upset, so I went and talked with her teachers.
They said today was much much better. There was still some difficulty with transition, and Sandra (our old VI specialist) who had shown up to drop off some braille books for Maggie actually went to the store and got some milk. Bless her. She’s doing better!!! She likes school enough to say it. And we asked at dinner if she was excited to go back tomorrow and she said yes. I have faith in this program and in these teachers. I feel so very blessed! Here’s to a good day tomorrow.
We’re all good. With the exception of a missing bright spot on the pituitary gland, everything is as it was before. This lack of bright spot may indicate diabetes incipidus. Yay. We’re watching for the signs, but as of her last test results everything is fine. She’ll be getting another blood test soon to see if all her growth hormone levels are where they should be or if the dosage needs to change.
Everything on the medical front seems to be winding down to a manageable pace, for which we are very grateful. I’m glad to have a healthy little girl.
Sunday, August 12, 2012
July was filled with family. A trip to LA to see Brandon’s cousin and her cute family, a visit from some Canadian family, then Maggie and I took a trip to Utah and Idaho to see my family. A week after we got home was a birthday extravaganza (yup, 50ish people in our tiny backyard) for Maggie turning 3 and Brandon turning…older. ;) He’s a young 27 now.
And Maggie’s 3 years old!!! I can’t believe it! She’s officially a big girl now. As the realization comes that she is getting older, if not bigger, we’re instituting some changes around the house. Maggie is adjusting surprisingly well, which gives me hope for the upcoming school year.
We are no longer using the tray of her high chair. It’s the kind of booster seat that just hooks to a normal chair and the tray attaches to that. Her legs are long enough though, that she was starting to make the whole thing tip, which resulted in milk everywhere on multiple occasions. She is still sitting in the booster seat part of the chair, but she now eats at the table like a big girl!
Maggie has been on growth hormone for almost 2 months now. She is amazing! She reminds us at night that, “It’s time to do my hormones.” When we first started we wanted her to be happy not traumatized, so we offered her ice cream after she got her shot for the first few times. It’s now expected. So she reminds us to do her shots, just so she can get some ice cream. A small miscalculation on my part…at least she’s getting calories? No, she does not get ice cream every night, but she definitely asks. She doesn’t cry at all, unless ridiculously tired, and then the tears are a result of that, not necessarily the shot. She will not let me put it anywhere but her legs. It must hurt less there, because every time I’ve tried to put it in her arm or back or belly after the first week or so she screams. When administering the shot, you count to 6 to make sure all the medicine has come out. This helps Maggie a lot, because she can count, and she knows that after 6 its all over. I’m really so proud of her. She’s a trooper.
Our biggest change lately has been potty training!!! She’s done amazing! As always. Have I mentioned my daughter is incredible? Because she is. We’re starting the third week and the past few days she’s been without an accident!! She does NOT like having wet panties, so that’s a big motivator for her. And an M&M after she goes in the potty doesn’t hurt either. The first week I though I was going to die though. 17 accidents the first day. Only 4 the next, but that’s because I had her sitting on the potty most of the day out of my lack of desire to do another load of laundry (which I had to do anyway). It took until the end of day 5 for her to preemptively be able to tell me she had to pee. She would tell me she had to got potty as she was peeing. Sigh. But she finally got it!!!! I was so SO happy. I mean, it was day 5….I thought maybe she was just too young to understand the feeling of, I have to pee, and then being able to hold it until she got to a potty. But she’s not. I just had to wait it out. I know that I’ll be doing lots more laundry, but I accept it because I do not want 2 kids in diapers.
Which brings us to…I’M PREGNANT!!! Due December 23rd with a little man. We are SO thrilled!!! Brandon found Maggie a couple books at the thrift store about babies, and Maggie absolutely loves them. Grover Takes Care of Baby, and I’m a Big Sister. She talks all the time about baby brother. “Mommy has a baby in her tummy!” is one of her favorite mantras to chant while spinning in circles or rhythmically flinging her slinky. And whenever she’s sitting on my lap (which is quickly disappearing) she pats my belly and says, “Hi baby. I love you!” It’s so precious!!
So recap: Family is great. Hormones are going very well (hopefully we’ll see some results soon). My little 3 year old is sitting at the table now, and going in the potty, and will have a new baby brother in December.
We’re moving her crib into a toddler bed soon too. Which will then lead to no diapers at night, I hope. Life is busy and wonderful, and we are so very happy. Except to be dealing with Thursday’s MRI. That pretty much promises to be awful. Sigh. But Brandon’s family will be here that night for the weekend, which is awesome. So hopefully that all equals out to pretty good. That’s sound math right? Awful + Awesome = Pretty Good? I’m saying yes.
Tuesday, June 26, 2012
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?
Tuesday, June 5, 2012
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.
Friday, April 27, 2012
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.
Sunday, April 22, 2012
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.
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.
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!
Thursday, April 12, 2012
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.
Tuesday, April 10, 2012
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?
Tuesday, March 20, 2012
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.
Wednesday, March 14, 2012
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!”
“No, with DADDY!”
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.
Tuesday, March 6, 2012
Friday was Maggie’s first day of school! There were some of the jitters for me that I think everyone assumes come with your child first leaving you. But on a whole I was just excited. Maggie has a new vision specialist, Laura. She’s taking the place of Sandra, and teaching the toddler level children in our area. Sadly Maggie was not at all eager to go to school. We’ve been prepping her all week telling her how much fun it will be, then she just woke up cranky. Go figure. Pause on the porch for the obligatory first day of school picture!Whining all the way there until Laura showed her a huge bin of beans! A sensory bin, where the kids get to scoop and bury and just have fun. We have a small box of beans at home that I hide toys in for her to search through and find. It was the perfect thing to comfort her with familiarity. They spent a lot of time walking around the room and touching the different little tables and chairs and art easels and toy kitchens. There was tower building time, when she just emptied the bin naming the shape of each block as she took it out. Then playing clean up and counting them all as she put them back in the bin. It makes a big difference if you’re playing clean up than if you are picking up your toys. One is a fun game and the other is an arduous task.Maggie was thoroughly excited with the trampoline. It is square and has a handle, where ours at home is round and I have to hold on to her. I wonder if there is an attachable handle we can buy for our little trampoline. It would really save my aching arms.After an hour we all took a trip to the play ground. Which she didn’t want to go to, and I realized I’d never called it a playground, it was always “the park.” Once we’d established that they were essentially the same thing, she was thrilled. The slide, the bridge and the swing were all played on. Laurie was able to come for the last half hour and work with Maggie on some mobility. Maggie received her first cane in November, and has taken to it like a fish to water. She loves walking around with it, and singing the many songs Laurie has taught us about the proper use of and terminology for the cane.By the end Maggie really felt comfortable and I think she had a good time. She’s been talking about the things she did at school, so that means it stuck out in her mind. Yay! Thank you Laura and Laurie! I think she’ll do well next week when Ella comes to class as well. We’re excited to meet a new friend.