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!

19 comments:

Anonymous said...

thank you for posting love love love you donna :)

JennyH said...

Love the updates. Sounds like your family is busy but doing great. I hope Zoya just one day "poofs" and starts gaining weight easily.

All your kids sound so awesome and sweet. You do a good job raising them!

Leah S. said...

So glad for the update. I'm sorry we couldn't get together over the weekend. Maybe the kids and I just need to figure out a time for a road trip!

Timothy said...

That was a great way to begin my day, Thanks Charissa.

kim said...

9 lbs in 15 months is great. you are doing a wonderful job, its your love for Zoya that leaves you feeling like its not enough. You desire to see her with roundness, and each time you see her ribs and pelvis sticking out you feel defeated.
You are doing wonderful.
We adopted our oldest (she is now 19), she has many cognitive challanges. I found when I finally let go of issues (mostly learning issues) and accepted, this is how she is, i felt better. We of course still challenged her, but the hours and hours of extra time trying to increase her reading levels, teach her even basic math,...she wasnt able and we were only losing our sanity. I know adopting her was what God meant for her, and we did ok together. It was a mutual blessing ...but oh boy, never easy ; )

Alicia said...

your blog is one of the few i can read even without pictures. you are amazing, your family is amazing, i admire you so much! i've been reading you since Ava's adoption, maybe not so frecuent, maybe not replying much, but definitly your words are worth reading.

we just adopted a 4 yr old girl with DS, and our journey beggan reading Meredith Cornish and you, both of you inspired me, God used you to reach to my cold heart, and now we have our daughter which we love her so much!!

Justine said...

Loved it, even without pictures. By the way, thanks for telling us about BrainPop. Also, I know I was supposed to email you something, but I have no idea what it was. Email me if you remember, otherwise I'm sorry. If I don't write it down it goes away. :)

Anonymous said...

Thank you so much for updating!! I was so excited to see and update when I chceked your blog this morning!

Tina K said...

Again I am reminded of just how much I miss you and the family when I read your blog. Thank you for keeping us posted. I have wanted to call but with the hour difference, it's hard to know when is best. Love and hugs to all.

Monica said...

Thank you for a wonderful update.

Monica
www.xmaswarrior.blogspot.com

Nana Robin said...

Thanks for the wonderful update on your precious family.

Christi said...

I am so happy to hear about all my little cousins! I am glad everyone is doing well.

Christine said...

Charissa I love reading your updates. Big hugs. Ic an so realte about feeling tied to the feeding tube except that I feel tied to the toilet and enema. Big hugs again.

Anonymous said...

Hi kids, I was so glad to see your update, altho I know it was very time consuming for you to do for us. I love you kids, and thank God for His sustaining grace, and blessing each of you so much. You and John are the BEST parents for each of your kids, and God knew that when He gave them to you. Oma and Opa love hanging out with you as much as you love having them..and I'm always glad to hear when they go visit you. I can't wait to see more photos, and I believe we will have John to thank for that soon! :-) It's amazing how each kid has a specific talent to contribute to all the others. I love you all!
Aunt Sharon

Anonymous said...

I check once a week to see if you posted and was so happy to see your update. I know it has to be harder now with the little ones but we sure do miss you telling us about your family. Thanks for updating all of us. As usual, your family is darling.
Cheryl

Nikki Davis said...

So glad you updated! My life is busy with two send to school, healthy children. I can't even imagine how you find the time to sit down during the day. I love to hear how much your older kids are growing and accomplishing. And your littles reaching goals and flourishing in your family. You and John are amazing and truly blessed.

Nikki

Chad and Dana said...

Yay! Loved reading every word! Love you all!!!

Heather Urban said...

Wow, I miss you guys SOO much !! Give all of the kids a kiss for me. I promise to visit soon ! & I will be seeing everyone in January !!! (: Love you !
Heather

Qadoshyah said...

The updates are great! Sounds like you all are doing well :). I can't remember if this has been addressed for Zoya yet or not. But, have you thought about making her dairy (at least cow-milk based dairy) and gluten free? Possibly even some other allergens. But, those two foods can really hinder good absorption and cause so many problems. Just a thought that may be able to help her :). Our family deals with all sorts of allergies (dairy, gluten, corn, oat, etc), so it's always one of the first things in mind when there's an issue going on.