Catching up

I finally (finally) got the kids all registered at school last week which I fancy as QUITE the accomplishment. I underestimated the convenience of the online registration and realize now that I probably shouldn't have complained about having to fill out the same online registration three times because it really doesn't compare to filling out the same off-line registration four times.

I thought I had everything under control when I requested all of their immunization information from our old Pediatrician's office before I left. I kept them in a folder I have handy with some of Dylan's records and insurance stuff. I was ON IT. Yea... not so fast.

Florida schools require that their immunizations all be done on a Florida immunization record. So whatever little Utah form I have is almost irrelevant. Multiplied by 5. Not only that but they need a copy of the child's last well child visit. Which, whatever, I called and requested it and not until this very moment did I realize I never actually got it... Anyway...

I had to make appointments for all five of them to get into the doctor so we could give them our shot record so they could input it and spit it out on their own form. Yay for doctor appointments. Nu-uh. Because you can't have five kids all be seen on the same day. The most they will do is three... so we actually had to go back two days in a row. But when we were there they gave the kids a once over and gave us the actual form that the school requires for the well-child check (which our Utah doctor wouldn't have had anyway.)

Then we needed birth certificates, then we needed proof of residency. And this ain't no joke, we needed FOUR proofs of residency. FOUR. And I needed a copy of Dylan's IEP but I expected that. So I have been getting all of their packets together for the last three weeks and everything was finally done and I could take them all in. Phew! Check that off the list anyway!

On the second day of the doctor visit we stopped at Walmart, all 6 of us, and did some shopping. I went grocery shopping and then each of the kids got to pick out a toy. It was a special day if they got toys! But then I got up to the front of the store and I kid you not, no wallet. No flipping wallet. I die. So I went back and forth to the car, a couple times actually, called the doctors office and finally decided to abandon ship. (Cue heart ache at the left toys, uh huh, that's why we can't have nice things.)

I told the Customer Service lady and she said to leave the cart to the side and I can swap the milks out when I come back. (Note: Do not buy milk at Walmart.) I left, stopped by the doctor's office because I was right there and then started the trek home. Angry. The very angry trek home. I called Walmart and the doctor's office again, no wallet.

Duncan came up to me (gently) and said "Mom, I have an idea of what we can do about your wallet. We can pray." Being the realistic pessimist that I am I agreed, and we prayed as a family but I am not going to lie, the focus was more on me not losing my freaking mind about it instead of having it miraculously show up. I hate stories where people pray and things miraculously show up, I despise them.

I am one of them.

I called Walmart again about a half hour later and sure enough, someone turned in my wallet. No kidding?! They took all my cash but honestly, small price to pay for that Utah Driver's License since I needed that bad boy to get my Florida one! Take all the money! We still cancelled the cards but I consider it a mad victory for the prayer team.

I took Asher back to their school on Wednesday for his Kindergarten placement test. Apparently he is adorable and smart, who knew? As we were walking to the car the assistant principal came over and tracked me down to break the news to me that Dylan won't be able to have all of her needs fulfilled there and would need to go to another nearby school. I think he was geared up for a battle, or tears... one or the other. When I told him I called the district earlier in the year and they had already told me I could almost literally see the weight lifting from his shoulders. It was rather amusing. Yes it sucks but in the end, you do what you have to do. If the other school meets her needs better, of course we would want to do that!

Matthew has been working really hard and has already traveled a few times for work. Again, pool = blessing. I feel bad for him because of all the honey-do's (I hate that word) around here fall on his shoulders. Fixing things hanging things, moving things. All of his 'me' time is taken up by, well, me... not him, so he doesn't have any down time. It will happen though.

I am training for another full marathon. I am not sure why I do this to myself but I can easily be talked into running 26.2 miles. Who am I? It's a big one, in Washington DC and I am pretty excited about it other than the training part which is horrible, awful and no good, even in better weather. It's so miserably hot it actually feels good to run on the treadmill - it's just a bit too noisy because it's upstairs but we will figure something out. I have run a couple times with some local people here, starting at 5 am because it's only bearable out there until about six (and you usually aren't done by then). I have really loved running for meeting new people though so that's fun, I always like a little adult interaction. I guess that's why I do this to myself...

I have also started drawing a little and plan to do a bit more when the kids are in school and I have a little more time. It's been years! Like 8 years! Before we left I picked up a pencil and copy paper to see if it was even worth a shot and what I drew actually looked like it was supposed to and I considered that a good sign. I am going to try to draw people on for size, the last person I drew was in high school and the kid ended up looking like an alien so I never drew another face, but when the inspiration hits, it hits, so I am hoping to take advantage.

Random dump of pictures from the last 6 months... These are apparently in no order whatsoever.

Saying goodbye to family. 

This was a long time ago for some reason... most of the cousins. Several head swaps later (several...) and it was fit for canvas and is hanging on Lou's wall.
This was from my camera, in the real deal, they are actually looking at the camera!

Buddies.

Me hoping everything's covered...

Sharing a milk shake

Easter pictures - I should have taken one before church instead of after. My bad... 

Just all of my handsome boys. 

Movie time.

Capturing the bump on his head. There's a scar, it's sad. 

Ian hates to see Dylan in this walker. He hates it. He wants to help her so badly. 

School program

Before we left Duncan's church teachers gave him a cake for his ninth birthday since he wasn't going to be around. He felt like he was king of the world. 

Last day of school for Asher and Greyson.
Ms. Connie and Ms. Kaycee
(Matthew's always had a crush on Ms. Connie. I can put that out there now that we don't live by her and we can all laugh about it instead of her thinking he was a stalker.)

We love Mrs. Passwaters - She's taught everyone but Greyson.

And Ms Debi the Manager of the preschool.
This was a hard day for me. Saying goodbye to all of these people who I have loved for so many years! 

Love Ms. Reed. He looks so excited for this hug.

Instead of pinewood derby cars they did Lego cars and it was AMAZING. Really. A one stop shop. 

He LOVED it.

Goodbye dinner for us. I had just spent four hours at the spa and was totally chill (and totally greasy).

Last day of school for these guys. 

I love this picture.

Just keep swimming

How timely of a blog title!

We have been swimming SO much! I honestly can't imagine being down here with four restless children without a pool! It's been a total life saver and made this heat totally bearable for us.

That said, Greyson totally tried to kill himself three times in the first 24 hours here. Really. Twice I was with him and we were letting him swim without a jacket but it was one, actually two, cases where he set off toward me without me knowing so I turned around and there he was... you know, flailing. Under water. The third time he actually took his jacket suit thing off and hopped in the extremely deep hot tub and we didn't see him slip it off (or know he would). Ugh. Honestly. Three year olds.

None of our stuff was here for the first couple of day so I took a ribbon that was tied on our suitcases and tied the back of it together so he couldn't get it off. Joker. Then, as soon as he could, Matthew went and got him a buckling jacket.

Then the pendulum swung too far the other direction. He wouldn't get in without a jacket and he would freak out at the prospect of it. Okay kid. You need to learn how to swim somehow, where is the middle ground?!

Side note, I offered him to a new friend that was over and she said "Is he three?" And I told her yes and she said "uh-uh, we don't do three year olds at my house." Hilarious. Clearly she thinks as highly of three as I do!

The last two weeks I hired a local woman to teach the kids here at our house. Ms. Jill does half hour lessons at community pools and won't do a house call for under an hour. Good thing I have four kids that could use lessons right!? She's amazing!  She has Greyson totally comfortable and actually excited about practicing what she taught him so I just go out with him once or twice a day without his jacket and let him practice because that's really what it's going to take to get better. He's all about it. I have to watch him pretty closely. It's stressful!

Happy to report though, after two lessons and lots of practicing her passes the "swim test". Which is where I toss him in the deep end and he gets to the side on his own. I did it a few times this morning, even saying it was a "test" and he was all about it. Huzzah!

Asher went from wearing a jacket to swimming totally on his own. He is a little too confident if you ask me, so I have to watch him and when I am not watching he has to wear his jacket but I predict within a week he will be totally fine with no jacket on. It happened so fast! He jumps off at the deep end and swims to the stairs. I think he's dying about 3 times along the way but he always comes up with a smile on his face. He "dives" too, a lot. Like full on head first dives. If he ever starts doing it correctly he will be awesome. As is, about 2/3 of the time I have to follow his "dive" with an "are you okay?" Because...  ouch. I can't even believe he still does it. I think he likes the amount of ground he covers in the water.

When we got here Ian wasn't confident without a jacket and was just trying swimming on for size but it didn't take him very long swimming every day to realize that he can actually swim and the jacket is totally gone. He is super comfortable in the water and Duncan's loving having another swimmer in the pool to play and dive with. It seems like as soon as he figured out he can go under water and actually move, it took off from there. He is really thinning out too! You can tell he's been working so hard!

Ms Jill has just been working with Duncan on his stroke and teaching him freestyle and the back stroke to see if it's something he wants to do as far as joining a team. I am not sure if he does at this point, he loves swimming, he just doesn't love swimming *right*.  She coaches a swim team, works at the YWCA and does some other things too, I can't even keep track, so she's a good one to know if it's something that's in the cards for Duncan. Our neighborhood doesn't have a lap pool though, so I am not sure how to get him in a wide open space to practice, I will probably have to ask her what the best approach for him would be.

Instead of a lap pool we have an outdoor skate hockey rink that is never used. (Random!)

Almost every night once it gets dark outside we have a "swim party" and we turn on all the fountains, bubbles and lights and go out and swim for a little while as a family. The kids LOVE it. "Are we having a party tonight?" It's super fun and crazy.

Swimming totally wears them out, it's so good for them. Greyson has been napping every day. Ian has even opted for a nap a couple times which totally surprised me but hey, I'll go with it. He should probably nap more than he does. Me too. I should probably nap more than I do...

It's also been good for friends. We have had a few friends over to swim and as soon as I get my life in order I think we will do it a little more frequently. I had a church meeting the other day and I told her to come on over and bring her kids and they swam while we sat outside for our meeting. It was perfect!

It's actually a real blessing for us to be able to have it. People want to come over to play and Dylan is in a safe place without me having to take her somewhere else, like someone's house, for the other boys to be able to play with friends. We aren't all unpacked and presentable yet but when I feel like things are a little less chaotic I will be able to have some of the branch play dates over here.

 Try not to take yourself too seriously.

This is my "hard knock life" picture. 

This face - He cracks me up. 

Dylan Update and Pic Overload

Just a little update on Dylan because she is the one people are the most curious about.

In January Dylan had a surgery on her legs. She has "tight capsules" in her knees and she doesn't straighten her legs all the way. This is fine now, she started walking without a problem, looking like a little baby orangutan walking around with us, but walking. As she gets older and heavier, without being able to straighten her legs, it would put too much weight on her quads and she would no longer be able to walk.

There is a surgery that they do to help fix the problem. Wait for it... Anterior distal femoral hemiepiphysiodesis. They go in with small incisions above the knee, on the right and left side, and they put staple in the front of the growth plate of her femur. The back continues to grow as normal and as she growth this will gradually straighten her legs.

We decided to do it toward the end of last year, having been told it was a simple procedure and that left untreated she won't be able to walk later.

Filthy liars.

Not really, I don't think the know either way how kids will react, especially kids like Dylan but it was not a simple procedure! I think they may have been a bit overly excited about it. And not that it matters because this was the best option for her anyway. Long story short, her legs are really stiff after a terrible recovery and she refuses to walk and even just standing makes her quite nervous. It's a TOTAL bummer considering how much walking made her happy. Sadz.

We had Michael, the physical therapist who originally taught her to walk, come in and work with her a little but we were in a little bit of a time crunch given the loom of a cross-country move. There is a stander that he loaned us. You basically lock their legs in and it gets kids used to bearing weight through their legs. It was big and ugly, and she despised it. But I tried. And gave it back. He also got her a kind of walker thing you strap her in. We still have it. She also hates it. We still try.

There was an end goal of getting her a better stander that would not only serve the purpose of weight bearing but it also does a bit better than the other at stretching her legs to be straight again. We tried to push it through when we were in Utah but that didn't happen and then I got a call that the insurance company said it wasn't included at part of their coverage. The insurance company didn't even cc us on the letter, it just went to National Seating and Mobility and I thought it was over until I text Michael about something else. No is not an acceptable answer to him so he is going to make some phone calls and see if we can start the process again. I think he views getting her to walk again as a challenge but he's also $125 out of pocket a visit and now *really* far away so where do we go from here? I am happy that we at least have someone on her side, because we don't have a support team here yet.

Honestly, if she won't straighten her legs she won't walk again. We are just hoping for the best and waiting. We have an appointment with the Neurologist in September where we hope to get a referral to the Spina Bifida Clinic here and get a new Ortho and see what they have to say. Also this should get us moving toward a new Physical Therapist and now that the kids are a bit older it will be easier to take her to appointments rather than paying out of pocket to have the appointments come to me.

Tracking down doctors and services for her has probably been the most challenging part of the move. It's two steps forward and one step back. I can give multiple examples of this but all that matter is that things are moving forward regardless of how many follow-up calls, transfers and appointments.

Otherwise Dylan has been fine in Florida. We have her room set up in where they had an office and there are big windowed french doors to the room that won't work for her. She gets up too early when the light come in so we will have to remedy that somehow. Curtains? Cover the windows? It's on the to-do list. But it's a great room for her, close to everyone. We will probably just have to put down hard wood in there instead of carpet. Carpet in a tubie's room is just a plain old bad idea.

She is OBSESSED with my room right now and I have no idea why. There is a lot of wall hanging stuff leaning against the walls waiting to be hung everywhere in the house and it's just dangerous, and she's so curious. Precisely as her developmental age of a year would lead her to be. I have to always remember to shut the door but her world is very small so I even hate to do that. Soon it will be fine.

She also likes to eat shoes, which is disgusting, so we are trying to get our system down so she can't get her hands on them. Everything seems to be a work in progress as we get used to a different house.

And here is a dump of nearly every cute picture I have taken of Dylan since January. I owed you. So here you go. (Also, there are pictures of her incisions right smack in the middle. Sorry about that. It's interesting stuff though.)

This was back when Dylan was walking. One day at school she fell back into a box and her teacher (like a very good mom) took a picture of her before she saved her. I love it. 

This was right before surgery in January - The next are almost in chronological order I think. 

This is in recover and this, my friends, was a very VERY pissed off little person. 

They wanted to send me home to manage her pain or to try a dose of the med there. I am no dummy, this isn't my first rodeo, let's get the first dose in her with monitors on. She crashed. We had to stay a night. The most miserable night. Ugh. 

Well this is boring. 

But at least there is company? She slept with us forever.
Slept with Matthew anwyay, I slept on the couch. 

Couch, bed, couch, bed. Boring.

These are her "little" incisions. This is not little!!!
I had to take her back in because it wouldn't stop bleeding. I took these when they unwrapped her.
The stitches are internal dissolvable ones.

She's so sick of this. 

Giving up. 

First time with pants on since the surgery! 

Cute picture of her with Mike in the stander that she hated.
She quickly learned to push the tray away and to rip that chest strap off. She wasn't messing around. 

This is what she looks like when she needs a hair cut. Sad bunny. 

This is pretty much Dylan's straight legs now.

Laughing at Ian. She loves him. 

Dylan an Vi having a moment. They were really cute together. 

Most recent picture, this is in her new room! 

Silly girl.