Singing a song is fun to do!

Maggie has been such fun lately!! We've taken some videos (and pictures, you know how I love pictures) of recent activities. I was trying to figure out a way that she could better remember things we've done; have an experience like looking through old pictures. So I was listening to the videos with her the other day. My goodness! She loved it!!! She had her favorites of course, and wanted to hear them over and over. I'm not sure she understands that she's hearing herself, but we'll keep it up and I know she'll get it soon. She's so smart.

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!

Happy Days!

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.

First day of school (again)

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.

 

MRI results

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.

Family, Hormones, and the Potty

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.

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.