Sunday, May 1, 2011

A sweet note and random motherly thoughts

I received such a sweet note from one of my imaginary friends the other day. (An imaginary friend is what Matthew has dubbed my many online pals that I have never met. I have quite the online social circle, I am not exactly sure what that says about me!) I quickly sent her a note of appreciation and warned her that I would soon be sharing it with the world, or at least all of my other imaginary friends via this blog. I hope she doesn't mind... it's just the risk you take when corresponding with me I suppose!

Here's the note:
I don't know if you'll find this silly or not, but I figured I'd tell you anyways and let you laugh at me if you want. LOL. Dylie walking really motivated me to get off my couch and exercise this entire last month. I just thought that it's so silly that I have the ability to walk as I please, but I wasn't taking advantage of that. So anyway, I've only lost 3 pounds this month (BFing does NOT help me lose weight and instead makes it harder) but those 3 pounds are a direct result of Dylie's tenacity! Thanks for sharing her with the world.

So thanks for taking the time to write this Jamie - I love to get this kind of feedback, knowing that Dylan has motivated and touched someone is the best possible thing I could possibly be told. I would never laugh at you... and I better use YOU as an example and get cracking myself!

As a random thought, I just want to mention how awesome it is watching all my kids together. They are all so caring and love each other so much. I think it's beyond amazing when I see one of them do something so sweet, when it's not expected or, in some case, something I didn't even think they were capable of.

Dylan is very aware of her brothers and she does this thing when she's looking at them, and she tilts her head to the side, puffs out her cheeks and leans in really close to try and get them to look at her. She does it to Asher when she's checking him out. Then, the other day I saw her doing this to Ian and then she took a couple small knee steps to him, open mouth kissed him on the forehead and then turned and knee walked away. (Megan even saw, I have a witness!) It was such a special moment! (Whether Ian noticed or not... he so didn't.) She will also look when people say her name now where previously it didn't get much of a response unless she recognized your voice and wanted to come see you (ie, Michael, Matthew) but just the other morning my mom was over and said something to her while she was on my lap. She just looked at my mom and smiled.

Duncan's giving her quite a bit of practice at this name recognition stuff because he calls her name a LOT. He always wants her watching him when they are in the same room. It's really cute... and she likes that he's interacting with her. It's still a bit of a struggle with Duncan not knowing his own strength when it comes to the other boys but with Dylan he's very nice, even tender some times. He very rarely is rough with her and when he is, it's more of a lean in to her to see if she's ready to rough house.

Ian though, Ian teases Dylan, he will take something, show her and then run away and she will follow after him. It's very naughty. But, the other day, she really wanted something he had. He wasn't in the mood to tease apparently because he walked over to the toys, picked up her beloved cow and handed it to her and walked away. Realizing that she would no longer follow him. Amazing! I really didn't think he would come to that on his own, especially this early, since it's something we had to teach Duncan fairly recently. I was very impressed.

Over all though, he's a very caring little guy. He's been very gentle with Asher, rubbing the top of his head. He went through a brief stage of whapping him on the face, but it's back to the gentle rubbing. He's very careful. Same with Owen, he knows they are babies... Even when Dylan's face down throwing a fit (her very typical "I just need to go to sleep" fit position) he will walk up to her, lean over and rub her back gently. Really. And then he will just move on to playing with whatever he was playing with in the room.

I try to keep it cool when I am being yelled at by Dylan because I want the boys to keep cool in a sometime chaotic environment. We don't always know what a fit is about so we try to do what we can and move on and give her a minute if we can't solve her problem. Ian is obviously picking up on this.

This is turning into a brain dump on how great my kids are with each other but I can't help it. I start writing one thing and I am reminded of another example, and another... I am really proud of them what can I say?

Moving on... We did get the feeding pump for Dylan. I was just sick and tired of her losing it all over in the morning and I am hoping that nightly feedings will keep things moving along. I can work around a smaller breakfast most days, but school presents a different problem because she needs to last from when she gets breakfast to when we get home. Finally Matthew gave the okay. He was the hold out, not wanting yet another medical contraption in the house for his little girl.

Because she wanders around at night we will need to get those gates you can put together to make a 'pen' for your toddler and put it around her bed. That way, if she gets out of bed while she's hooked up to the pump she can't go very far. She has a tendency to go over to the door, we aren't sure why... it could be that she knows where it is, it could be the teensy light from the smoke detector or maybe light from under the door? We keep her room pitch black because she will get out less that way.

Until we get the gate, I have been using the pump at least once a day to give her slower feedings. If she is tired I will hook her up and have her feed go in over an hour or if she konks out for the evening I will have it go in over two. I am hoping just doing the feedings slower will help but I am sure it's more comfortable for her anyway. We need a good weigh in in a couple of weeks to find out, I think she's due for the Spina Bifida Clinic in May.

We have a routine going where she gets up at about 5:30 in the morning and I give her an extra 2.5 ounces to get things moving and get a few extra calories in. If anything I am sure it makes her feel better in the couple hours before the rest of the world wakes right? She may or may no go back to sleep... I have no idea. Unless she's sad, I go back to sleep!

I also took Dylan to get fitted for new AFO's. We go through a company that makes the AFO's in house, from what I understand most send them away, and we have few choices on the pattern. Instead of the same butterflies we opted for a blue pattern with pink butterflies. I need to make an appointment to pick them up in a couple of weeks. Shout out to grandma LouAnn who came here to sit the boys, all of them, while we went!

We wanted to go to the Tulip Festival again on Saturday to meet a group of special needs kids. Chloe's mom Tara (Of Kidz fame) was trying to throw something together for everyone to meet. Get it, tulips, "Welcome to Holland", awesome. However, we woke up to several inches of snow! So sad...

Meanwhile, drama drama drama. Dylan's school has refused to feed her by mouth. It wasn't a big deal or a battle I wanted to take on until just recently when it's been difficult to give her a full feeding before school and she gets hungry. So I faxed something in to the hospital so they will send the school her Upper GI study which is not a swallow study, but it's all we have. She told me they make kids have swallow studies before they feed them... They are afraid of a child aspirating and them being liable. Well, I don't want to do a swallow study... Aside from me just plain old not wanting to, it wouldn't produce accurate results because it's not food she's used to and the nurse feeds her! There are a couple other reasons too, but over all, it's just not necessary! So I sent a very stern e-mail to the woman who runs the special ed program, stern is by Matt's description... stern is good, abrasive is not, and I was walking a fine line. I went all mama bear on them and stuff. We will see where it gets me. This is just ridiculous.

He was sitting on the couch watching TV, one hand on the drink and one on the remote. I was trying to get a picture of that, but I got busted.


Sleeping baby, awwwwe. Incidentally, this is one of the blankets gifted to him from Jessica. I get compliments on it everywhere I go. Everywhere.


My (very) blue eyed baby. There's still time for them to change, think they are going to? I tell you, I am thinking not!


Cousin Jenna snuggling up before bed


It was snowy so I brought the slide in. It's still quite a bit too big for Ian. I can't get him to climb the steps and I have to catch him. It was a failure of a snowy day activity. At least Duncan has fun on it though!


I know the shirts bad, but that face! We have cut 3 of the four canine teeth and can't wait for the drool to stop!

1 comment:

Jenna said...

Hi Dylan, boys, and Family,
My name is Jenna and I came across your site. Dylan is an amazing inspiring little girl, with many fans I am sure. She has touched my life. I have special needs and it takes me longer to do things than most people, but Dylan is an example for me, that I can do anything I want to even if I have special needs and it takes me longer to learn then most people.
www.miraclechamp.webs.com