Monday, October 17, 2011

I'm still here

I appreciate those of you who have called and emailed checking in to make sure we are OK. Yes, we are all fine and dandy. It has become increasingly difficult to find computer time lately, as I'm sure you can imagine. :)

Just a little update on everyone:

John and I have been hosting a small group/book study with several fellow church member families at our home on Wednesday nights.. We are studying the book Weird by Craig Groeschel. We have been attending Life Church for about eight months now and we are all loving it. Even the kids look forward to it every Sunday, and John and the older kids serve by setting up and tearing down as we are temporarily meeting at our local elementary school. An added bonus is it is just across the street, and there are 1:1 helpers for Ava and Joseph.

Last weekend my dad was on a businees outreach to Thailand, and my mom was here to visit. It was really nice to just hang out with my mom for a few days. A few of us (Hope, Jude, Joseph, my mom and I) made a spontaneous trip to Minnesota to bring back a dog (long story). We had a wonderful stay with my brother and his family. They had my nephew's little motorcycle set up with training wheels, and Joseph learned how to ride a motorcycle...with a little supervision of course. I have the cutest pictures, and if I could ever figure out how to EASILY get pictures from my phone to my blog, I would most definitely post them here! He was in heaven!

Simeon is growing up before our very eyes. Over the summer he started talking in a low voice. There is nothing weirder than calling your son on the phone and hearing a man's voice say "Hi Mom". He is in a Challenge class through Classical Conversations and is learning they don't call it "Challenge" for nothing. He is growing and stretching in every aspect, and making some deep friendships in the process. He spends his time playing soccer, fishing, air soft guns with his buddies, and is involved in youth group. His strong personality makes it challenging to parent him sometimes :) but that makes him a great leader. He is a great kid.

Liesel is a homeschool mom's dream. She loves to be challenged academically and is always looking for new things to try and learn. She is my most rule abiding child and that makes her a great babysitter. She is so helpful around here! She really seems to love having special needs siblings to love and teach. She has picked up the piano so quickly and effortlessly (has been taking lessons for eight months). She and John have a little hobby. It is called raising calves. She has her boots on at 6 every morning walking to the barn to bottle feed the babies. She is also raising two guinea pigs, Prince and Princess. Sometimes I hear her talking baby talk to them up in their room, just like I have always talked to my babies. ha. She will be a great mom someday.

Jude is my little computer genius. He is always watching computer tutorials and apps, etc. and trying to teach me how to use the Mac or my iPhone. Whenever anyone has a computer problem, it is always, "Ask Jude." Which reminds me, I really need to ask him how to get photos on this blog from Picasa. ugh. I am not pleased with Picasa!..Anyway, he also enjoys making movies on his own Mac laptop, which he bought with his own Christmas, birthday, and allowance money by the way. Also, he loves something called "garage band" and is teaching himself how to write his own music. He is really cute and I like him a lot.

It is Ok that I'm bragging on my own kids isn't it?

Hope turned 7 last month. She is really growing up. Her adult teeth are coming in, which I find a little depressing. If you have seen her in the last couple of weeks, I am sure she has told you that she learned to ride a bike at Aunt Lisa's house last weekend. She is like her sister in that she devours books, big ones. She is, like her older siblings, taking piano lessons and just about has 'Cheerful Chimes' down. I'll be so glad when she moves on to the next piece. lol. She loves loves loves having Joseph, Ava, and Zoya to play with. She is really a big helper, especially when I'm trying to make dinner when she takes them outside to the playground. It sure is nice to be able to cook without a bunch of little ones pulling on me and standing in front of me and fiddling with the stove nobs.

Ava is loved by everyone. Seriously, she is so squishy and soft and fun to cuddle with. I think everyone in the family agrees. She has become so much more social in the last year. Still not talking other than an occasional, "Hi Dad", or "Stop!" But her sign language has really blossomed and she is learning to ask, through signs, the things she wants and needs. This is so huge for her, and honestly something I was never sure she would be able to do. The other day when my sister walked in my house holding my new baby (brown) niece, Ava started signing "brown baby". Of course, I had to ask my kids what she was saying, and they all knew 'brown' from watching Signing Times. It was pretty much the sweetest thing ever. In fact, it made me cry a little. My little girl not only knowing the sign for baby, but knowing that the baby was brown on top of that. How awesome is she! I want you to know, that not only is she now walking everywhere, but we have even seen her RUNNING a few times. :) And a few days ago while the kids were dancing in the living room, she was JUMPING up and down. Who knew the 4 year old girl who didn't even know how to roll over would someday be able to run and jump! She is in public school this year and is doing so well. Her teacher even said some of the typical kids adore her and call her their friend. Sweet!

Joseph is still as rowdy and rambunctious as ever! He makes me so tired sometimes. He is very sneaky and manipulative but he has a killer smile and most persuasive puppy dog eyes in the world. He LOVES to hug and kiss and snuggle so it is extremely difficult to stay mad at him for very long. I had his IEP meeting recently and while looking at last year's goals realized that he had met every one of them. School has been the best thing for him. John bought him a ream of paper for his birthday, and when he opened it up, rather than tearing the paper like he normally does, he ran to the crayon drawer, sat down at the table, and started coloring. Yay! He has learned to use paper appropriately! He has also learned to draw a (rough) circle, lines, and use scissors. He is learning sight words. The cafeteria lady pulled me aside last week and asked me if I would consider letting him eat in the cafeteria since they were having to replace so many the trays of the other kids that Joseph takes the food from. OOOOPS! I guess we still have some work to do in that department. 

Zoya: If it wasn't for her eating and weight issues, I would say she was doing great. Sadly, I never knew how eating issues could affect an entire family so profoundly. Sometimes I feel as if my world revolves around feeding time and a feeding tube. Sometimes I feel so anxious and guilty and obsessed with trying to fix her.  We have learned through an MRI that at some point in her early life, Zoya had some kind of a stroke or brain trauma. We are not clear how or whether this plays into her problems but I do wonder if it does somehow. Her swallow study came back normal, and so for months I thought it was behavioral until another speech therapist explained that a swallow study only tests one of the three phases of swallowing, and that she can't seem to get the food to the back of her throat to swallow it. But strangely sometimes she CAN. And the most bizarre of all is that even with all the calories we are pumping into her throughout every day, she is still just barrrrreeeeeellllllly gaining weight. She is up to 29 pounds now, which is a record for her. But that is after 15 months of intense feeding therapy, she has gained just 9 pounds. At times I wonder if it is worth it. Sometimes I think she would prefer just being a anorexic looking but 'normal' kid rather than having to have formula that makes her sick pumped into her stomach all the time. I guess the general consensus is that she has a super high metabolism (due to the HIV), a lack of appetite (due to the FAS), and strong gag reflex and difficulty swallowing (due to 13 wk prematurity and brain stroke as an infant). Every now and then she will surprise us by saying she is hungry and then eating a few chips or something, but we haven't seen any rhyme or reason to this behavior.  I really don't think the cleft palate has anything to do with anything, interestingly enough. She is seeing three different speech therapists including the one at school, one for speech, and one for feeding. I am praying something will make a difference soon! Or at least that I can quit worrying so much over her! On a positive note, she is having a fabulous year at school, and aside from the feeding challenges, she is a wonderful and sweet little girl. We love her.

John just walked by and saw me blogging picture-less, and he promised to convert me back to iphoto. Maybe I will have photos again soon after all. I never thought a blog post was worth making without photos. If you are still reading this, I do appreciate that a few of you have expressed concern and love for  our family. 

I hope you aren't sorry you asked!