Have I mentioned I'm detail oriented?

George Update:

Natalie found George's cage on the kitchen table on Monday morning. She said, "Mom, I'm going to let George go."

Good. I thought. Now I don't have to tell her he's dead. 

"Okay, sweetie. Dump him under the bush and let him hop away when he wants to." I said casually. 

Natalie comes back in carrying George's cage. "George isn't leaving. I think he likes it in there so I'm going to leave him in there. I'll let him go later." she said. 

Wouldn't you know that cricket was stuck to the bottom of the tupperware. How in the world does something like that happen? And how in the world is a kid so innocent that she thinks he's staying in the cage on purpose instead of stuck there?  Love it!   She finally figured out he was a goner at dinner when she mentioned George wasn't moving. I said, "Yeah, I think he didn't make it."  I had to explain what that meant and luckily she wasn't upset. She disposed of him in the yard.

George, in all his glory (last week)

Natalie, gathering grass for him on Friday (and yes, she dressed herself)

Monday was a pretty laid-back day. Ainsley was off school for the holiday and Natalie had a half day (her last day for the week). We headed to the hospital in the afternoon. On our drive home, it was dark already and sure enough, Ainsley fell asleep. So tonight she had a hard time going to bed. At one point she called me up to her room. "What's the deal?" I asked. 

"Um, um, can you wake up Natalie so I can sleep (aka play) with her?" she stammered.  

"No, Ains. It's bed time." I said and started walk out. 

"Mom, mom, I have another deal. I have another deal." she blurted out. 

"What's your other deal?" I said.

"Um, um. You forgot to scratch my back a little. Can you get in my bed and scratch my back?"

I swear that child is going to be the death of me. I succumbed to her cuteness. How could I not?

The girls, playing in Ryan's room.

For dinner, I made this soup. I love it and it was the perfect ending to a cold, rainy Monday. I meant to take a photo when the pot was full, but Henry came home and got to it before I had the chance. Here is a photo of it almost gone. Sigh... it doesn't do it justice. The kale. The potatoes. The sausage. Simply lovely. 

Ryan Update:

Ryan is down to 15 liters per minute on his supplemental oxygen but doesn't want to budge from there. P.L.I.C.A.T.I.O.N  of the D.I.A.P.H.R.A.G.M came up again today (didn't we just talk about this two weeks ago with the head surgeon saying absolutely, positively 'no'?) It's just talk at this point.... but might happen sooner rather than later should all the brains at the table agree. 

The good news is Ryan is off his milrinone (a medication that stimulates the heart to contract harder). 

He continues to see an Occupational Therapist (OT) and Physical Therapist (PT) several times a week. I have been advocating on his behalf to have this happen more frequently for longer periods of time. He is very stiff from lying in bed all day. I also have been asking for the nurses to move him more throughout the day.  OT made him a new breast plate (aka turtle shell) last Thursday so he can try tummy time. I really think the more he moves, the better his little muscles will feel and (obviously) the stronger he will get. 

When I visit, I help him work on head control and stretching his neck. (the bumbo gives me an extra set of hands to support him while he sits)

OT and PT work with him to do different stretches. In this picture, his one leg is behind him and the other in front (like a runner's stretch). Simultaneously she stretches his neck and arms. If you look just below his leg, you will see his new turtle shell. I'll try to get a better picture today. 

And because I like hearing about you guys too, I'll just throw this out there.... some friends and I were chatting last week about dreams. I was the only one in the room that dreams (on more than one occasion mind you) I am in the shower getting ready and then wake up to find I really pushed the snooze button and fell back asleep in between alarms. Seriously? Isn't there anyone else who has this dream?  Apparently, my friends do not. They have another, more startling dream - one where all their teeth fall out. At least three of them said they have this reoccurring dream. Any takers on that one?

Better than a webkin

Natalie brought home an addition to our family last Monday. She found him during recess and proceeded to stick him in a bug catcher and keep him. In the car on the way home she said, "We need to name him. What's a good boy name?"

"Natalie. Let's name him Natalie." Ainsley chirped. 

"That's not a boy's name." Natalie said. 

"Oh. (pause) Let's name him Ryan!" Ainsley suggested.

"How about George?" Natalie said.

"Yeah, George." said Ainsley.

And that is how George the cricket came to be part of the family.

Ballet is on Monday afternoons so when Natalie said she wanted to bring him, I said it was okay. I stopped by the house for a second and during that time Natalie proceeded to open George's cage to feed him (on the front stoop after being disappointed I wouldn't let her open the cage in the car or house).  You can guess what is coming next... I came out of the house to find a crying Natalie. 

"George got away," she sobbed. 

Being the loving mother I am I went back to the spot where George hopped out of the cage and quickly found him hiding under the bush, at least I think it was the same cricket. He looked the same anyway.  And okay, I didn't look for him because I'm loving, I looked for him because telling Natalie to just forget about it wasn't worth the wailing and gnashing of teeth that would ensue. 

I pointed out to Natalie where George was sitting. She cheered up immediately and grabbed him before he could hop away. 

"Careful, sweetie. You're damaging his leg." I said cringing as she squeezed his one leg at an angle that didn't look comfortable. 

"Oh, sorry, George. I didn't mean to damage your leg." she said. 

In addition to the manhandling, there were rocks in George's bug catcher... "for him to sit on." As Natalie jumped up into the car, the rocks bounced around. I could see George was in for a rough night. Upon our return home, Natalie wanted George to have a bigger cage and begged me to make one of my disposable tupperware containers into a nice new home for him. He was already looking a little peaked. "If he is still alive tomorrow, he can have one of my containers. But not until then." 

George was alive the next morning and all of this week. Natalie said things all week like, "Where's my pet?" or "You wanna pet him?"  Ainsley would often walk through the room where his cage sat and say, "Hi, Deorge!" and keep going. (so cute, believe me on this one) On Friday, Natalie found out I was going to be at home for a few hours and said, "George can stay with you, mom. He won't die. Make sure you give him some water." I was honored she trusted me so much. 

We got sidetracked this weekend. I just found George (in his cage still) on the kitchen table. He's resting peacefully.

I've fallen and I can't get up!

Being a regular in the CICU over the last nine months, I've heard a lot of stories about those kinds of families - you know, the ones who come to visit their children inebriated, or use their child's bed as a table for their fried chicken dinner, or start talking to themselves and mixing up their days and nights.... you know, the weird ones. 

Well, I have this friend... she might just become one of those people the nurses warn new mothers about. She was holding her son in his bed, much like I do, and needed to leave to get her other children. She happens to have older children, just like me. We have a lot in common you see.  Her nurse was tied up doing a transfer across the hall. So my friend gets it in her head that she can safely get out of the crib without help. 

Mind you, her son is on a ton of support, just like Ryan. He has an A-line (arterial line) and a PICC line (Peripheral Inserted Central Catheter) on one side and a feeding tube, blood pressure cuff, and pulse oximeter on the other side. Not to mention the nasal cannula for oxygen support, but that can be flipped easily from side-to-side and the leads monitoring heart and respiratory rates. She wisely chose to try and climb over the side with the least invasive lines. 

She placed her sleeping son on the bed beside her and gingerly started inching herself over the lines coming from his tiny body. About halfway out of bed, his feeding pump alarmed and she glanced over to see if the line was occluded or if the feed was done. As she moved her face closer to get a good look at the warning message simultaneously reaching to shut off the alarm, she lost her balance, flipped over the bed rail and onto the floor. 

Thankfully, the only harm done to her son was he got his cheek waxed by his feeding tube tape, which incidentally did not come all the way off so the feeding tube stayed in place.

The only harm done to my friend other than a few bruises was to her pride. This ranks right up there with the twitching eye incident and has to be the most embarrassing thing to happen since then.  

Let's just say my friend will ask for help every time going forward when she needs to put her son down. 

Anyone want to share their most recent embarrassing moment?

Wordless Wednesday

I know you aren't supposed to take pictures of your kids in under garments so let's pretend this isn't my kid and that she is wearing something in addition to her Care Bear foundational wear. I just can't help myself. 

Here is a video of Natalie entertaining Ryan. 

Back on Track.

There has been a lot of correction going on in our household lately. 

If you wanted to sum up my life in two concepts it would be purposefully with balance (incidentally I have a friend whose husband loves these two words too, which is why we get along so well...my friend and I that is, not me and her husband, although we get along well too. Oh dear, now I'm just rambling.)  When I am not living on purpose and am out of balance I feel... well, without purpose and off balance!  I have a hard time devoting all of my time to one thing. I'm not an all or nothing kind of gal. I'm more a little here, a little there, and a dab over there too. As my afore mentioned friend's husband likes to point out - if you are excelling in one area, it means you are ignoring another (or multiple others). 

So back to the point - a lot of correcting in the last few days because I've noticed my parenting has been a little less purposeful since Ryan's diagnosis and we are all suffering for it. The girls whine way too much. They cry all too often. And they ignore (yes, downright ignore) what I ask them to do. Or, simply use the word 'no.'  My new favorite phrase is, "Would you like to try that one more time?"  If their no doesn't turn into a 'yes, mommy' we have some serious words.  

The hardest thing to admit is that I am contributing to this problem...a.k.a. I am the problem!  I noticed that most of my commands are given on the run, rushing to get ready to leave and I don't stop to look the girls in the face and ask them to do something. Not only that, when I'm rushing around I don't take the time to make sure the girls are actually implementing my requests. It gives them the perfect opportunity to ignore me!  I am learning that when I am distracted it allows the girls to be distracted into NOT LISTENING. 

So I am slowing down (well, trying at least). Trying to be in the same room, on the same level with the girls when I ask them to complete a task. And I am being super consistent in making sure they actually do it. And if my one-liner doesn't remind them to act, then I am being very strict on guiding them to action either through discipline or physically walking them through it. 

And guess what... it's working!  Wouldn't you know that purposefully working with them is bringing results. But that wasn't the point of this whole diatribe. The point was another trend I am noticing... and that is that kids are highly distractable.  Here is a recent example from the other day at the hospital:

"Ainsley, you need to keep your voice down. There are other babies in this room and we don't want to wake them up. Look at my eyes, please."

While saying this, I notice her eyes shift from my eyes to my forehead. 

"What's that?" she says pointing to the tiniest red dot on my face. One I haven't noticed before. Probably a tiny blemish that I absent mindedly scratched at. "I think you have blood."

"It's just a scratch, sweetie. Did you hear what mommy said?"

"You have blood. I think you have blood on you." she still studying my forehead. 

At moments like these, I realize I've lost her and move on. What are your tricks for getting your kids back on track?

Ryan

Ryan had a quiet Monday. We worked on sitting up a little (he lays a lot) and turning his neck. He smiled at me and looked at me with those large eyes between long curled eyelashes and I fell in love all over again. That boy gets me every time. 

Flirting...

After mommy made him work hard...

Ryan update

Ryan had a good day today. No fever - so that's great. The cultures are not back yet, but whatever it is, it is responding to all the meds that are being thrown our little boy's way. Thank you for continuing to keep him in your prayers.