Monday, March 21, 2011

Random Observations & Book Recommendations

Ben took this picture while he was making Dori laugh. Our good camera broke so all we got is the iPhone for now His image looks like he's at a weird mirror in a carnival fun house, right?
It was a gorgeous day at our neighorhood farmers market and lake, but Wynnie wasn't in the mood.
The boys in their smarty pants shirts I got them in Boston. I also got to see my baby cousin who is a freshman at MIT.
The boys in the backyard on Sunday
Major victory this weekend!
100% Benjamin. David. Johnson.
My new friends and their sweet baby Amber from Boston!

Hello all! Today I figured I'd capture some observations that I wanted put down so I wouldn't forget. Don't try to follow any logic or a path in this entry, this is my mind free-basing tonight.

1) Dori is in his crib right now (nearly 11 PM) and is saying "Good day!" "Hi!" and howling like a werewolf. He's an interesting little fella. Last night he partied in there til 2 AM on his own while the nurse listened on.

2) Wynnie had his ortho boots on yesterday and he rolled rolled rolled til he could get to Ben (who was sitting on the ottoman playing his free skateboard apps on the iPad). When he got to Ben he kicked him over and over again to get his attention. All I heard was "Geesh! Stop it Wynniiiiie!" I told Ben "You know when you mess with Alex and I tell him to not let you get into his head? Well... now it's your turn. Don't let Wynnie get into your head." He got up and moved to the sofa. It was fun for Wynnie while it lasted. Dori must be teaching him a thing or two.

3). A new book I can't wait to download is "Heaven is for Real" by Todd Burpo. It is simply amazing and beautiful to hear of this 4 year old boy from Nebraska having this experience. Read this article, I bet it'll make you want to get the book too. When adults write about heaven or near death experiences, I get cynical sometimes. Sounds bad I know. But when it's from a 4 year old boy who's parents at first didn't even believe him (his dad is even a pastor!), it really got to me.

4) Alex and Ben came home from school talking about how they helped people, even when they didn't get anything back for it (we're trying to get them to do nice random things for people during Lent). I was so proud. Then two hours later, Alex tried negotiating with me if he could have $1 for every dirty sock misplaced around the house. I said no deal. Then he asked if him and Ben could have a garage sale on Saturday cuz he has a list of toys he wants to buy with new money. I said no to that too. Gotta love the entrepreneurial spirit in that sweet boy.

5) I was gone Saturday - Thursday night working in Boston so I missed the boys, the babies and Chris so much. Unfortunately Chris got sick, the babies were both sick, Viktoria got sick, I had bronchitis the whole time I was there (I still do, but I'm on the mend). Dori is nearly back to normal, but Wynnie is regressing with acting really quiet and lethargic, and I think he has pink eye too. Chris is still sick. Looks like we need to get ourselves our own carport at the doctor's office. But I think we'll all be getting better here in a few days.

5.5) While in Boston I had the honor of meeting Amber, an 18 month old sweet little girl with ML2. I've connected with her parents online through an ML2 parent support group and when I mentioned I was headed to Boston on business it was perfect timing that Wednesday (my free day where I had zero presentations to deliver) Amber's parents were driving in from their hometown 2 hours away from Boston to go to Boston Children's for Amber's metabolic geneticist appointment! yay!! My most favorite part of that whole trip was meeting precious little Amber, and meeting her kind parents. I was so blessed to meet them, I cried when I had to say good-bye... they seem like really lovely people. Amber wears cute little glasses, has long voluptuous hair, and sports a little oxygen tube in her nose. I just wanted to give her lots of hugs and kisses but I was sick so I didn't want to infect her. Since she's from the east coast, she totally says her name with that east cost accent... her daddy pointed to her and said "Who is this?" and she said "Ambuh". I loved it!!!!

6) Alex FINALLY lost his front tooth that had been loose since mid-December. It was actually starting to turn a weird color so I think the tooth was starting to "die" or something. So we tied tooth floss around it and had Dori yank the string. Dori gave it a nice tug but the whole string came off. Then Ben wanted to pull it out for Alex but he is not very "soft handed" so he got turned down on that offer. So then I finally yanked it out. Alex was so excited he said "This calls for a celebration!" ... so had me put both babies on the floor, blast on the music and have a dance party. It was cute.

7) Our friend Mark that lives in Louisiana is known as "nino Mark" to the boys. After we prayed for the tsunami victims Sunday after church, Alex said "I'm sure glad nino Mark didn't die in the tsumani!!" And I told him Mark was safe cuz he lives in Louisiana, not Japan. Well I guess Alex thinks Louisiana is as foreign and far east as you can get if he thought Mark got swept up in all that stuff. Mark got a good laugh at that.

8) Another good book is "The Help".

9) When I go out with the babies, if people ask "How old are they?", when I say "Two" they either look at the babies funny like "hmmm..... I'm no pediatrician but that baby sure look tiny for a two year old" Sometimes they go as far as saying "He's so small!" so I just say "Yep, he likes to grow at his own pace. He's in no hurry." OR if it's one of the nurses at one of the offices we go they nicely say "WOW! They are getting SO big!!" I don't know which is better. The nice lie that we both know is just kind words, or the honest funny look. If I was on the other side of the fence, I might blurt out "oh wow, he's so tiny!" so I really can't judge.

10) I've found alot of inspiration from other ML2 families on what they are going through, what advice their doctors are giving them and what good attitudes they all have about their children, and their struggles. I wish I could win the lotto and give a million dollars to each of them - so they can all quit their jobs and spend all the time in the world they want with the precious little angels. Each family has such a story, no one has it easy. I'm so thankful that Dorian and Wynn have done relatively well over these past 2 years... a few hiccups here and there. But all things considered, the babies have been doing so well and I can't believe two years have already flown by. I want time to slow down for just a little. Not enough time... but I guess that's the case for all of us no matter what.

11). Since Chris is sick in bed I had no one to ramble on and on to this late at night, I thank you for indulging me. Speaking of rambling, Dori is incorporating his rattle into his repertoire now and keeps saying "YAY!". It's 47 minutes since I started writing this and he's still going strong. I can only imagine that Wynnie blocks him out well enough to have dreams of dancing at Studio 54 and Dorian is performing on stage. Rock on babies!

Tuesday, March 1, 2011

March 2011

Dori overseeing homework at the kitchen table
Alex and I during his Valentine's Day party at school
Us at the long term care facility after we delivered a big laundry basket of treats.
Cheetos and other snacks for the kiddos at Children's

I'm sitting here watching the babies get their speech therapy and it's enlightening/ entertaining to hear. Our ST is going on maternity leave real soon so she has her replacement here for training, so it's been neat to hear her debrief the new girl. Dori has full grasp of 8 words and prefers to call Ben "die die". We weren't trying to make a big deal in front of Ben (acting like "oh no, I don't think said that, it just sounded like it") but Ben over the past few months Ben is like "See!! He called me Die Die again! Ugh! Why does he call me Die Die!?!?!" Even during therapy when Ben's face is shown to him with the 8x10 flashcards, he is consistent with calling him that. Poor Ben, we need to get Dori to call him BEN! I can't help but think it's a little funny.

Wynnie was a show-off all smiles and cuddly with the new lady. He's trying to get on her good side. Ever since he's been wearing his hearing aids since January on a more regular basis, his interaction and responsiveness has shot through the roof. He's back to his ol babbling and expressive self, so that's so nice to see.

Basketball is over for Ben and Alex. Alex did a great job of learning the game and really liking it this year. Ben is so good at making baskets. He'd be pulled out of the game after only 2 quarters with over 20+ points to let the other kids play. I'm so proud when they play so well, especially since they enjoy it so much.

This weekend we took alot of treats to a long term care facility in Plano. In honor of Gabriella Scarpelli (a sweet little i-cell baby that earned her angel wings a year ago this weekend). Her mother shared that Gabriella loved to make people smile. While they spent alot of time at the Ronald McDonald House while Gabbie got her bone marrow transplant, they would receive alot of snacks and food gifts from strangers and it really touched them when strangers out of nowhere would brighten their day with their time and their gifts and thoughtfulness. So in memory of Gabbie, her mom wanted as many friends and family to help put smiles on the faces of people going through health difficulties. Then yesterday we went to Children's Medical Center with Viktoria and the babies to drop off a wagon load of cheetos and other snacks for the oncology kids. When those kiddos are going through radiation, everything tastes like metal. Cheetos is one of the few things that they can actually tastes through all that metal aftertaste. Hence, the wagonload of cheetos. The babies had fun driving all the way to downtown to make the delivery.

The boys and I read 4 bible stories the other night, then they got to pick their own books to read while I fed the babies. Alex chose a Star Wars book and after thumbing through it said "The bible is like Star Wars and God is like the Force." Pretty awesome.