Sunday, September 27, 2009

random tidbits

Sometimes I forget to journal random tidbits in our lives...and since I don't want to forget, here are a few highlights:

We have been really working diligently on speech. For the past six months, his team and I have really been working with Max on "using his words" (in addition to sign language) and we would point to our mouth as we spoke. Finally this summer, he got it. Once he understood what we were trying to ask of him, he now is attempting to vocalize. This was a huge accomplishment...HUGE. I don't even really like talking about it much because quite honestly, how can I adequately explain how much work has gone into just getting him to understand that concept? It's soooo not an easy task and at times it feels a bit hopeless.

Yes, our pathway to communication is going to be very long and very, very tedious. But fortunately, we have made some major steps forward and I am delighted. "Bye bye" is the phrase we work on ALL the time and it is really coming along. Thanks to everyone for being so patient as we practice "bye bye" each and every time we see you! :)

Max is sick...hopefully it's just a cold and will go away soon. Getting our flu shots this week.

This week we head to Children's for a series of appointments. We return again the following week for two more days of clinics. Hoping, hoping, hoping all goes well.

The following week is our care conference with all of Maxwell's providers. I'm very curious to see what comes out of it.

Max rode the horse again last week...for FIFTEEN minutes!!! Yep, 15 minutes! We were blown away. I was on the horse with him because he still isn't quite stable enough, but wow, this is HUGE!!! The therapist even added on another trick (putting rings on a tall pole) to further his work...and Max did it! It was truly awesome!!!

And guess what? When we got off the horse, I asked Max to say "Bye bye Willie" and he did. It was soooo stinkin' cute.

He continues to have a difficult time going to sleep, but the melatonin sure does help. But about four hours later, he is up again. We are not sure if this is due to the sleep apnea or his irregular executive function, which regulates sleep. I suppose we will know further after the surgery.

For now, Max chooses to come find me when he wakes up at 2am. Pretty darn cute...even if I do sacrifice quite a bit of sleep! For the past several years, I was so excited for the day when he wouldn't be connected to machines and could walk independently to my room if he needed me. My wish has officially been granted! :)

Literally every night around 1 or 2 am, I hear him get out of bed and stumble the hallway with his loud toy and head my way. Sometimes he goes back to sleep and other times he wants to play. And last night he was coughing in my face all night yummy. (ha ha) But I am beyond thrilled that he is healthy enough to not be connected to machines all night...that is quite the gift! :)

Max and I went on a "date" last night...delicious Thai food and a loving, handsome, adorable date. Does it get better than that? :) And the love was quite plentiful. Max is REALLY into my hair these days...and hugging A LOT. I was certain a fellow diner was going to suggest we "get a room" with all the PDA that was doing on! :) It was interesting having dinner out in public with absolutely zero conversation. We just hugged, enjoyed the huge fish tank, and ate our dinner in peace.

Max insists on our sliding glass door be closed. If you don't respond immediately, he throws a major fit.

He will ask for a video and watches it for a few minutes. Then he will come and find me with a different video in hand requesting this one now. And again...and again...and again. Sometimes he seems to understand when I explain that we are watching Elmo (or whatever) right now and we can maybe watch that one LATER. Other times he is quite annoyed with me.

Max still has a habit of holding his breath while crying. The other day I wasn't fast enough. He began to pass out, fell backwards and hit his head pretty dang hard. Lots of blood but fortunately no issues. We seem to be having a lot of head traumas around here lately.

He carries around a hammer toy (courtesy of Miss Ruthie three years ago) constantly.

He loves to find his reflection...anywhere. Door knobs, cars, television screens, door hinges. If there is a reflection, Max will find it...and love it! :)

He is very into holding hands with children. For awhile, it was just with his cousins but now it is with just about any kiddo that passes by. This makes for some interesting situations. He also can be a bit of a bully on the playground but not purposefully.

Even though he can feed himself, he absolutely refuses to feed himself breakfast. If I leave the room (sometimes he will have a morning snack while watching a video), he will come and bring the plate to me so that I can feed him. Who knows!?!

Let's see...I could probably go on and on with his funny lil' quirks, but that's all for today. Off to clean up the house while he attempts a quick nap.


Crystal M. said...

For the most part sounds like Max is doing pretty well. Keep up the great work Max and keep working on the things that need alittle more work, like sleep for you and mama.
Crystal and Eva

hannah m said...

Amy, I'm glad you've written down and captured these "now" tidbits. I am always inspired by the diligent,nurturing and fun mama that you are to Max.

I love that Max said good bye to Willie the Horse (after riding him for 15 minutes - awesome!) and I honor all the love and commitment you're putting into communication with Sweet Mr. Max.

Hoping he feels better soon and that your appointments at Children's are productive.

Oh, and I love that you two went out on a date...and for yummy Thai food!

Amy, Mike and Ben Russo said...

Sounds like Max is doing great and loved hearing all the tid-bits! How great with the horse riding and how adorable that he wakes you when he gets up (sorry you are sleep deprived though - good thing for Max he is so cute or you might be grumpy with the early wake-up call). He definitely LOVES his mama so much!

Hope Max feels better soon, you don't catch it too (which is easier said than done) and good luck with your appointments!

Kurby Family said...

I loved this post...I love all the tidbits. It is sometimes the little things that mean the most. It is great that Max is saying "bye bye". It reminded me of my joy of getting Josh to take 2cc of milk over 45 minutes! Your constant love and hard work does pay off and you reap those joys tenfold compared to someone who may never understand why you give your everything all the time. You are awesome!
I'm so happy that Max got back in the saddle and is doing well too! I hope he can get rid of his cold. And it is so cute that he comes to find you every night. It truly is a blessing that he has the ability to walk down the hall and find you without worrying about equipment. Now if you can only grab a nap when he does too! Thanks for sharing all of the "little" things that mean so much.

Brady Patrick Antaya said...

I love the language piece. We also point to our mouths to remind Brady to talk and now we find that Brady points to his mouth while he talks. Oh well...another habit to break later on!

Max sounds like he's doing great! I'm inspired by the horse riding. I don't know that I would last 15 minutes on a horse!


Gretchen said...

Hey, reading all your little random bits about Max- they are SO what Coop is doing right now, too! Gotta love those middle of the night visits- sounds like you're more graceful about them than I am.

Catherine said...

Likewise.. reuben has to say "bye bye" to everyone. We never knew whether he'd be able to speak 2 years after no vocalisation (cries or laughs included) so look forward to the day our boys can say hello and bye bye to each other!

Catherine said...

Good advice re mouth pointing when I talk. Will follow that!