Tuesday, September 27, 2016

Heidi's ADHD Battle

Some weeks are good, some are bad. Last week was a rough week.

First off, everyone seemed to have a cold. Which made everybody cranky and miserable. Complete with fevers (Rory hit 102.5!), stuffy noses to the point of nose bleeds, congestion, sore throats. I mean the works! 

Secondly, Heidi Anne decided to cut her hair the day before school picture day. So we had to get that fixed ASAP. Her hair is now in an "A" Line Bob style. 
Translation: Super short!

I don't talk about this a lot but Heidi Anne suffers from ADHD. Which isn't news, after all she's been diagnosed since she was 5. It's just gotten worse over this past year. 

She gets easily distracted (I used to joke she was Dug the dog from Up). She requires constant reminding of what she's supposed to be doing. She's very active, always moving or frigidity. She can be very talkative in class. She lacks impulse control. She has issues testing, she does good on tests but she could do better if she could focus longer.

Heidi gets frustrated and angry with herself due to everything listed above and as a mom that's hard to watch. I guess I don't bring up the ADHD because I don't want her to be treated differently. Or to use the ADHD as an excuse. I don't want her to be "Oh, I have no impulse control so that's why I ate all the cookies - it's the ADHD's fault."

On the other hand, we do try to understand the fine line between what part the ADHD plays in her behavior and what she actually has control over. We just adjusted her medications and waiting to see if that improves things for Heidi Anne. 

She is fairly good about following the rules at school. We figured out that one big reason is that the rules are written everywhere she goes. In the lunchroom, lunch rules. In class - classroom rules. In PE, the gym rules. In the hallways - general school rules. Everywhere she goes the rules are plainly written for her. So we're placing different rules in different parts of the house. It maybe silly but if it helps, I'll try anything to make life easier for her.

I wish I could take the ADHD away from her. But I can't. All I can do is give her tools and coping skills to manage it within herself. Which will take time. 

Saturday, September 17, 2016

Stacy Update and Rory Stories

Today, I spent most of it in Ogden with Anastasia. It was exhausting. We drove down, had a physical therapy appointment, where she isn't making much progress despite all the work we've been doing. She gets measured for a plagiocephaly helmet on Tuesday. 
Then we had a dietitian appointment to see how she's doing weight-wise. She's now 11 pounds 15 ounces and 24.5 inches tall. She's come a long way from that tiny 2 pounds 5 ounce, 13.3 inch long preemie. However, she's still small even by preemie standards, as in the 7th percentile for both length and weight. So we're going to increase her calories even more. Then wait and see if that helps. 

I wanted to talk about little Rowan. He's growing up so much so quickly. When I found out I was having a boy I thought "I can't be a mom to a boy, I won't be good at it! I'm better with girls." Well, I think I'm getting the hang of it, and it was just recently I realized that. 
Sometime between getting Heidi Anne out the door for school and Anastasia's physical therapy and naps I have time with just Rory. He's started to play with cars, for the longest time he'd only play with them if I played too and made the "Vroomm" "Vroomm" sounds. Tonight (after this long day) he handed me a car and grabbed one and started going "Vmm, Vmm" then smiled up at me like "See Mom, I'm paying attention. You're not just talking to yourself when we play."
He's also a ham, He has some toys that play music and he'll dance like an old man. One step then another exaggerated step with arms swinging at the elbows. (Char says it looks more like a Maori Hakka dance). I sing "Dance, dance, dance!" to the tune of whatever song plays if I space out on the real words (or let's be honest if I don't want Bingo stuck in my head all day, again).  Rory has started to yell "Dee, Dee! Dee!" which I think is his way of saying "dance" right now. 

Rory is an adoring little brother. He'll follow Heidi Anne though out the house. When she leaves for school he goes all around asking "Heidi? Heidi?". Which is so sweet and sad at how much he misses her already. He worships her and I don't think she knows what a big fan he is of hers. 
He is also getting used to being a big brother. Sometimes he'll steal Anastasia's toys but I do make that toy look super fun trying to engage with Stacy. He likes to get in the bumbo after she's been in it, too. Other times, he gives her his toys, babbles, waits for her to take it, looks intently at her, plays with the toy a little, then give it to her. The whole process is like him saying "Here, play with this. Oh, you don't know how? Let me show you. Now you try."  I also love it when he treats the baby doll nicely. He'll cradle it in his arms, pat its back. while walking around. Guess he sees Mommy do that a lot with baby sister. 

Just last week he followed Daddy into the bathroom before daddy could close the door. Rory lighted up and said "A Bath!!" Ran to the bathtub waiting for his bath. Daddy was like "Sorry, not bath time right now."

One more cute thing he's been doing. (Come on, he's the middle child, let him enjoy the limelight.) He'll pretend Daddy is leaving by going to the front door and saying "Bye Bye Daddy!" Then giggles at me, a few minutes later he did it again and again. Every time followed by a giggle as if to say "I'm so funny, he's not leaving yet!" 
Oh, how I love his smiles. He has so many smiles! While he lacks the words / won't always say them on que, he's still so expressive that you can guess at what he wants (or hates). 

Wednesday, September 7, 2016

Plastic Surgeon and Prosthetic Doctor Visit

A few weeks ago we had scheduled an appointment to see a plastic surgeon regarding Anastasia's head shape, she suffers from plagiocephaly in addition to her torticollis. Around the same time Rory tried to give Anastasia a hug but ended up busting her lip. Yeah, that's going to leave a mark.

We had to leave early in the morning to got there for our 10:00 am appointment. The office was running behind and I got a chance to talk with another mom. She had an adorable baby boy who was 4 months old and 15 pounds 6 ounces. She admired Anastasia and didn't believe that she was 7 months old and just barely over 12 pounds. Eventually, the nurse came to take Anastasia back to see the doctor. 

The doctor walked in and stated "Are you here about her lip? Because that baby has a very flat head!" Which made me feel a little self aware for her lip. I told him we were here about her head shape. He was very concerned and said we needed to get an appointment with the orthopedic / prosthetic doctor right away. He was very serious and asked if I had a cell phone, puzzled I gave him my phone.

He called the other doctor from my phone! He said "I have a patient who needs to see you right away. She'll be there (looked at his watch) oh about 15 minutes." Then he handed me the phone to give them patient details and to get the address down. The receptionist informed me "We're booked for the day but were working me in and we might have a bit of a wait. But it sounds like she desperately needs to be seen." I told her I was okay with waiting. 

I was in shock with how fast things were progressing as I drove to Midvale to see this new doctor. We arrive at the doctors' office just as a patient cancelled an 11:15 appointment. Meaning we could slide in and take that slot. The word serendipity came to my mind. 

We had to take a 3-D scan of her head. You basically lay the baby down on a huge printer and it takes a 3-D scan of her head. The tricky part is to have them hold still long enough to get a picture. It took 2 tries but the doctor said she was an easy baby to work with. He gave me a copy to see how bad her head is, the eye bone is starting to flatten which can cause issues down the road if it were to be left uncorrected. 
He gave me the copy, Diag 1 is her left eye and Diag 2 is her right eye, as you can see they aren't even and the right side of her head is very flat. It's supposed to be a close to a perfect circle as possible. 

*** Side Note - I do wish people would believe me when I say I don't have any questions. ***

The doctor then asked if I had any questions. I told him no, I had a good idea on the process, this wasn't my first rodeo, I informed him that my oldest had to use a helmet as well. I feel like he didn't pay attention to that part because the following conversation (with internal dialog) took place. 

Doctor: You do understand that this helmet must stay on at least 23 hours a day. Right? 

Me: Yes. We had to do the same with my oldest. (I just told him so). 
Doctor: This helmet is only effective if you use it. Her head is in serious condition, it [her head] is off by 20 degrees. A 6 is concerning, 10 is bad, and she is double that! I can't stress enough how needed this treatment is and why the surgeon sent you over right away. 
Me: Have you ever see a square pumpkin or watermelon? (Maybe if I explain how it works, we can head out). 
Doctor: Yes, (he replies with a puzzled look on his face.)
Me: You don't smash a pumpkin into a square. You take a little pumpkin, place it in a square mold and it grows into the same of a square. That's how the helmet works, the head grows into the shape we want it to.
Doctor: You're exactly right. I'll have to use the example in the future. (I must say I was please with my analogy). Do you have any questions? 
Me: (Looking at the sample helmet which had rocket ships and a space theme). Does it come it pretty girl colors or just plain plastic? Are there foam pads?
Doctor: (With perplexed look on his face again). Yes, there is foam padding and here is a sheet options to choose from for the helmet patterns. Now, do you understand how it will work and that it's only effective if you use it properly. 
Me: (Internal sigh. Honestly doctor, I think I have this under control).  Nope, no questions.
Doctor: Is she on any medications?
Me: Yes, Prolseic, 1.5 mg, BID (twice per day).
Doctor: No one answers that question that way.
Me: Well, my husband is a nurse. (And I read his text books while he was in school.)

Finally, I think I got through to him that I understood the process once he stopped asking 
"Do you understand the process?" 

Now we are in insurance limbo. Waiting to get the helmet approved. If it's not done in 5 days then we have to take another 3-D image because babies' heads change that rapidly. Without insurance it would cost nearly 3 grand! 

Meanwhile, back at home Rory and Daddy were having some bonding time. Here's a picture I received while in a waiting room.

Monday, September 5, 2016

First Day of School and 10th Anniversary

On Monday Heidi Anne has her first day of Third Grade. She has been looking forward to school all summer. To say she was excited was an understatement. Heidi Anne was up and ready by 6:30 am, (school doesn't start until 8:50 am). That's my girl.

We celebrated our 10th wedding anniversary on Wednesday. Technically, it was on Thursday but Char had work. Thus, we had our special dinner a day early. Grilled salmon for me, a nice juicy stake for Char, and beef hamburgers for the kids. We normally have turkey meat but we decided to let the kiddos in on the celebration. 

Last February, (keep in mind I was pregnant with Rory at the time) I thought our 10 year anniversary was coming up. Therefore, I thought we should really celebrate it by going away for the weekend. After all, I figured we could use a little brake from our 2 children. It wasn't until we were on our trip did I figure out that it was our 9th anniversary

How did I figure it out? 

Well, I was nauseous. Nothing but sushi sounded good. Char was teasing me saying I was pregnant (again) just 18 weeks after Rory was born. Going on about how we'll have Irish twins. I decided to prove him wrong. 

I made him drive about an hour away to Park City to get a pregnancy test (on our first vacation without kids since we had kids). I got the type that digitally reads "not pregnant" or "pregnant". That way he couldn't say anything doubtful like "I don't know, it looks like a faint line to me..." Or "It could just be too early...". 

Well, the test read "Pregnant" in nice bold, digital print. From the bathroom he hears "You're kidding me!" Which I am sure he thought was just me getting back at him. I was very serious. I was in disbelief. I told him something along the lines of "That is why you never take a pregnancy test while on vacation! Well, it's a unique 10th anniversary present." 

It was finally that it clicked, (as I was trying to calculate how far along I was), that it was our 9th anniversary. The whole time he never corrected me, because I was pregnant, then a mom with a new baby, quickly followed by pregnant (again). Smart man. He follows sage advice once given to him, "Even if your wife is wrong, she's still right!" 

Labor Day Weekend 2016

Our weekend started on Friday with an early morning physical therapy appointment for Anastasia. What is a physical therapy appointment like with an almost 7 month old? You basically pay for someone to make your baby cry. Okay, a little dramatic but true.

The therapist is super sweet and Anastasia likes her. We start out by stretching and messaging  Stacy's neck muscles because they are so tight. Which she is fine with. (Honestly, who would pass up a message)? Next, we try to find some toys to engage her with, today was a light up wand. We've tried musical toys, rattles, light up toys, but the thing she likes the most is just plain talking. She is such a talkative baby since her hernias were repaired. 

Once we have some toys, I show the therapist how I've been doing her exercises at home and she gives me some critics. We take some measurements to see how many degrees Anastasia can turn her neck, if there is any improvement in her skull shape (there wasn't), if she's cheating (which she does that sneaky little girl), Then the therapist does the same exercises I did, only the proper way. 
Some Exercises 
Today, the therapist added some new exercises. Anastasia just isn't making the headway she would like to see. It's around this time in the session Anastasia is getting pushed to her breaking point. It's hard because I know it's good for her in the long run but you can't explain "It's okay, we just need to do this 5 more times and we can take a break." I still tell her those things even though she doesn't understand me. I think it's more for my benefit and to remind myself that her pain is temporary. Especially when Anastasia pulls the big pouty lip complete with welling up tears. 

If we lived in Utah, or even just a bigger city, someone would be coming in twice a week to do this process for nearly an hour each time (in addition to what I do on a daily basis with her). Anastasia would be able to tolerate it more because she would be in a familiar home environment. Since we're in Wyoming we drive 2 hours once a week for a 30-45 minute appointment. I really wish we could do the in home therapy. 
On Saturday we went to Swiss Days as a family. I'm trying to do as much before winter (by default RSV season) rolls in. Heidi Anne wanted everyone to wear blue for some reason and I just went with it. 

We drove down and parked in a big field, which was packed. There was a LONG line just for the shuttle to take us to the actual location for Swiss Days. Heidi was excited to ride the bus because it's like the one that took her to Disneyland. Rory's face was to die for once we took off, he looked around as if to say "No carseat? This ride is fun!!" I sang The Wheels on the Bus to him. 

Once we get there everyone was hungry. We decided to go get scones. Which meant waiting in another line. Heidi Anne once again said "This is just like Disneyland! There are long lines for everything!" I guess that means we can check Disneyland off the things to do, we've got the wait in lines experience down.

It took 26 minutes, but we finally got those scones (which were HUGE). I only know how long it took because the man behind us kept stating loudly how many minutes he'd been waiting. As if by stating this fun fact would somehow it would make the line move faster. 

It was Rory's first scone. He was skeptical when we first gave him a piece. He took a little nibble, his eyes got wide, then he promptly shoved the rest of the bite in his mouth. He ate nearly half of a scone by himself. 

Once everyone had their fill of delicious scones we walked around the booths. I just love going to craft fairs, it's fun to see how creative people are. I saw an adorable rag doll that I thought Anastasia might like for Christmas. But this little rag doll was over $30!! There was a surprising amount of doll related booths this year. Heidi Anne loved looking at the pretty doll clothes. 

We spent nearly 2 hours browsing around admiring the different works of art. We found a lovely metal art work that fit our time in Wyoming perfectly. I love how the hooks are made from old horse shoes. It'll be by our front door for everyone's bags. 

After we got our craft it was time to head home. We then waited in line (again) for the bus to take us back to the parking lot. Then we headed back home. 

Char had work on Labor Day but we still had some fun. We had a barbecue (problem the last one of the season). Then spent family time watching a movie. 

All in all, it was a nice vacation.