Sunday, November 29, 2009

A weekend with family

Mark had to work on Friday so we drove down to my mom's house Friday night. The kids slept a bit in the car and then we put them straight to bed when we got there. They settled back in nicely and were soon asleep. They've been excited all week about going to Babushka's house. It's been part of Tim's prayers every day--"Thank you I'm so excited we're going to Babushka's house!"

Saturday was a blast. We had lots of people at my mom's house for lunch: 1 from the top generation (my granddad), 4 from my mom's generation, 10 from my generation, and 9 from our kids' generation. Total: 16 adults, 8 kids, and 7 dogs. I was so thankful it was nice outside. ;)

The kids did wonderful and played with their extended family all day. I did put Emily down for a nap in the early afternoon and she was asleep within minutes. I'm sure the other three could have slept as well but they were really doing well. I was watching for some of their typical signs of overload or exhaustion but everyone was doing great so I let them continue playing. The biggest highlight of the weekend for me was with Emily. She did not fling herself on anyone (in part because we didn't let her get to that state of exhaustion) but she did have appropriate contact with people. She was looking at pictures on my cousin's camera and Wendy was sitting down and Emily just leaned against her gently with her hand on Wendy's knee. She didn't wrap her arms around her leg or ask to sit in her lap or any of the other behaviors we have seen in the past with people she doesn't know. At the end of the day when my sister and her husband were leaving, I was holding Emily. I intentionally passed Emily to Jon for a hug, took her back, then passed her to my sister for a hug. In the past, whenever she has had physical contact with people outside of our immediate family she would wake up screaming at night.

She didn't wake up. :) She slept all night long without a problem.

I'm so excited to see Emily's emotional growth as she learns what a family and specifically what a mama and a papa are and do. I was very intentional about the way I passed her to people for hugs. I wanted her to understand that I decide who is acceptable for her to hug and that she is not allowed to just go hug whomever she wants. That was the reason behind passing her to my brother-in-law then taking her back before passing her to my sister. I don't know if it really makes a difference. But it seems to me that even if it's not a conscious difference to her that it may stick subconsciously that "mama is in control and mama lets me hug people who are safe." I'm hoping we can continue to build on her understanding of our role in her world so that she will look to us for guidance as she expands her social network.

All of the kids slept so well Saturday night. :) Sunday they played a little bit but we headed home pretty early to make sure we were home in time to get ready for the week. I really dislike getting home late after a long weekend. We end up having a miserable time at bedtime and it just feels like a bad start to the week. It was great to get home and have the afternoon to unpack and relax at home. Baths and bedtime went really smoothly and they were all asleep within 15 minutes. :)

Friday, November 27, 2009

Happy Thanksgiving!

It wasn't much of a Thanksgiving to speak of. :) We are going to visit family over the weekend so we didn't plan an elaborate dinner for Thursday (or really any dinner at all).

We did a LOT of yardwork in the morning. Danielle apparently loves to haul bricks, so she spent a couple of hours picking up brick pieces and putting them in a bucket. She'd let Mark know when it was full so he could empty it then she'd go right back to filling it up again! The other kids helped with pulling weeds and taking them to the dumpster behind the house. We had a great time as a family and Tim asked later that afternoon if we could do more yardwork. We had filled the dumpster so it wasn't an option, but I assured him we could do more in a few days. :)

For dinner I pulled out a lasagna I had made at a freezer cooking session with some friends from work. I had just gotten dinner set on the table when Mark announced that he wanted all of us to go outside to watch the space shuttle and international space station go by. I was less than enthused about this idea since dinner was on the table, it was cold outside, and I really didn't think we'd see anything. But we left dinner and trooped outside to stand on the porch. In just a few minutes, we saw them! It was SO cool, and well worth waiting on dinner!

When we went back inside to sit down, I noticed that Emily's lasagna was all gone. I thought wow, I didn't think she'd eaten that much before we went outside when I realized that she hadn't. A certain canine in our house had taken advantage of our few moments' absence and helped herself to Emily's lasagna. Good thing I didn't make a turkey! :)

Happy Thanksgiving!

Thursday, November 26, 2009

A funny conversation

Alex: How do you get to go up in space?
Mark: You have to go to college for a long time.
Alex: Oh...I've been to college.
Mark: You have? Do you even know how to spell "college"?
Alex: Nooo...but I can spell "cat"...C-A-T. ...And I can spell "dog"... D-O-G.
Mark: Well, you should be all set.

Wednesday, November 25, 2009

Recent pictures

The infamous cutting (yes, she's probably going to be a lefty but we leave the choice up to her)

All four of them playing together! This is actually a pretty common sight at our house. Since they're all relatively close in age, they enjoy a lot of the same activities. (They're decorating the chairs on the deck with chalk.)

My little Native American. She was so proud of her "costume" and that I was there to watch her!


I love this picture of Danielle and her friend Isaiah. They were sharing some giggles before the Thanksgiving program started.

Tuesday, November 24, 2009

Continual therapy

We try to incorporate a lot of therapy into the kids play in non-obtrusive ways. In fact, with pretty much everything they do I look for opportunities to tack on some therapy--my definition of therapy being structured activities to help bridge gaps or repair deficits in their knowledge or skills.

Here are some of our current "therapies":

Emily struggles with going up and down stairs and jumping. Her legs are not strong enough yet although they are amazingly stronger than when she came home. To work on her leg muscles and her jumping, we have been playing a game where she climbs onto a phone book and "jumps" off. It's not usually a jump (she usually steps off one foot at a time) but she has jumped a couple of times and I make a big deal out of it. I sit in front of her to encourage her and to catch her if she loses her balance. We also work on stepping up and down on the phone book alternating legs. I've also worked some on this with Danielle, but I usually try to keep it to one child at a time. The benefit to doing two or three at a time is we also work on taking turns. :)

All of the kids LOVE to cut. If you want to keep them busy for an hour, give them paper and scissors. :) Danielle does a great job using the scissors but struggles with being able to cut productively, so we've made a game out of me drawing lines on the paper for her to cut. First we started with straight lines which she can cut really well. Then we did zigzags which I stapled into crowns for the kids. Now we are working on circles (these are really hard for her--even big circles). Part of the problem is that she thought she was trying to save the paper on the outside of the circles so she would cut her circles apart in the process of trying to "cut out" the outside edges. Now I've given her incentive to cut out the circles. When she finishes her circles, I put a happy face on one side and a sad face on the other. Then we talk about "happy" and "sad" and the corresponding faces. This is great for language and emotional development, too. :)

We drink raw milk that we get from a local farmer. Recently, I've started skimming the cream off of the top and we've started making butter. On Saturday the kids helped me with this. We all looked at the cream as it started, then passed the container (a clear plastic container) around and took turns shaking it (which was really good for some of my coordination-challenged kids!). We practiced listening for the sound of the liquid and looking inside the container to see what was happening. They loved that we had butter at the end so we had fun and a good "lesson" at the same time.

Monday, November 23, 2009

Oops

Kind of left you hanging there, didn't I? I didn't realize it's been a week since I posted. :)

We been having lots of family time which has been great. This weekend was the boys' end-of-year soccer party. We held it in the skating rink of the church associated with their school and everyone had a great time! Obviously, this was the first time the girls had ever been on roller skates and the second time for the boys. Alex can skate independently! He doesn't even need to hold on to the wall. I was SO impressed. Skating requires quite a bit of focus for balance and motor planning (not his strong suits with the apraxia although he doesn't have global apraxia) so it was amazing to see him so comfortable on skates. Tim would have done well on the skates except he's a ham so he prefers to wave his arms in the air, shout "WHOOOAAAA!" all the time and fall down a lot. Silly boy.

The girls liked the skates but weren't particularly coordinated on them. :) Danielle spent most of the time going around hanging on to someone (most of the adults kept our shoes on to make it easier to help the kids) but had a good time. She really liked it when she figured out she could skate/walk on some mats in the middle of the rink. Then it wasn't as slippery and she had padding when she fell down! :) Emily had a hard time keeping her feet on the floor, but she liked it so I think she'll do much better the next time she skates.

Most of the other kids there (first grade boys) also hadn't been on skates but maybe once before so everyone was on even footing. That was nice, and it was nice to see Alex succeeding at something some of his classmates were struggling with. He doesn't get to experience that very often and I hope we can find more areas where he can "see" success.

This was a really nice way to do this since we wouldn't normally take the girls to a skating rink this soon since they're usually pretty loud and crowded. This one is small (in the basement of the church) and there were only about 20 of us there total so there was lots of room and not too much noise (other than Tim!).

Tuesday, November 17, 2009

Six months home (plus a bit)

The girls have now been home for 6 months so I thought some of you might like an update.

Danielle: She walks nearly normally now and her legs have gotten so much stronger. A month or two ago when she was walking I could tell that her ankles were turning in due to weakness--even that has now corrected itself! We are constantly getting comments from parents and teachers at school about how much her walking and balance has improved. Danielle is VERY social and all of her classmates love her (the feeling is mutual). She loves school and loves to tell me all of the things she does each day. Her English is coming along really well. We can actually have conversations now and swap questions and answers. There are still times when she says things and I say "what??" and she shrugs and smiles and says "I no know" because she's trying to tell me something but she doesn't actually know the English word for it. She is such a funny girl--her new favorite word is "yeehaw" (they just studied cowboys in school). Danielle has gained 8 lbs in 6 months and weighs nearly as much as her brothers!

Emily: Our little talker is having a language explosion! Her speech is getting much clearer with her obdurator although most people would be hard-pressed to understand much of it. She absolutely loves to sing and walks around in the afternoons asking me to sing with her. Emily wants to do everything the big kids do and they do a really good job of looking after her (and tattling when she's doing things she's not supposed to!). She showers just like the big kids and has gained at least 5 lbs since coming home. She can dress and undress herself with the occasional exception of shirts (she has a hard time getting them off by herself). Emily is our snuggler and we usually spend 15-20 minutes in the afternoon with me "slinging" her without a sling. I hold her on my hip but tuck her right arm behind me and drop her down a bit and she snuggles into my chest. I think this has been great for her bonding. I've debated actually getting a sling (baby wrap, etc.) but since she's already at 30 lbs I'm not sure how much longer we'd be able to use it. We've seen a great decrease in her attempts to hug anything in sight but we still watch her like a hawk and usually head things off before she even gets a chance to try. Oh, and Emily can now run. And I do mean run. When we first got home she could barely walk so it's great to watch her take off after her siblings (although she gets mad when she can't catch them!).

Let me know if you have any questions about where they're at developmentally and their progress since coming home. I tried to hit some of the highlights but I might have left off some things that people would like to know. :)

I should mention that I LOVE the six-month mark. It just seems to feel like things are settling down at about 6 months home. Language is no longer such a barrier and I really start feeling a connection to the kids after 6 months. I felt this same way with the boys. I'm not sure if I need 6 months to adjust to them or they need that 6 months to adjust to family life, but either way it's great to see how far we've all come!

Sunday, November 15, 2009

Comment moderation

Since I like to know who is talking with me :) I have enabled comment moderation. All unsigned posts will be deleted without posting. I could have removed the "Anonymous" option from the Comments but I know there are people who would like to be able to comment but do not have a Google or OpenID login. This way, you can still comment as anonymous but if you don't leave your name on your comment it will be deleted before it ever reaches the blog.

I am always happy to hear from differing viewpoints and it is so valuable to me to know what techniques have worked (or not!) for other parents. I get lots of great ideas and valuable thinking material from those of you who have been there, done that and are willing to share your experiences, so please keep those comments coming! :)

Saturday, November 14, 2009

Too old

On Friday I was finishing up tucking the boys in. Tim asked me how old I was, to which I replied 33. He looked at me for a second, then said "You're getting old, Mama." I laughed and said yes, I am. He looked at me a little longer and then said "No, you're getting really old."

With an introspective look on his face..."You're going to die soon."

By this point I was really laughing and said no, I think I'm okay for awhile.

What was really funny about it is that he wasn't saying it as though he was worried, just very matter-of-fact. Apparently 33 is the new 90! :)

Wednesday, November 11, 2009

Narrow escape

On Tuesday I got a call from school (which always sets my heart pounding, by the way). They were concerned about Danielle. She was saying that her teeth hurt and they thought she felt warm, but they couldn't get a good temperature reading off of her. She didn't really want to play and didn't eat any of her lunch. Using my so-finely-honed mother's instinct ;), I told them to let her stay at school as long as she didn't have a fever.

They called me back an hour before school was over asking if someone could come get her as they just didn't think she felt well. By the time I could have gotten there I couldn't have gotten her home before I had to pick up the other kids as well, so I said no and that I would pick her up after school (still no fever).

When we got home, she seemed to be fine. A little slower than usual, but I attributed that to the fact that she hadn't eaten. She ate a good dinner and at bedtime she was again complaining that her teeth hurt. I began to suspect that she might be getting her 6-year molars in so I gave her some pain medicine and sent her to bed. She slept like a log and has been fine ever since--other than occasionally complaining that her teeth hurt and pointing to the back of her mouth. I have clarified with her that it's her teeth and not her throat and her throat is not red at all so I'm pretty sure it's really her teeth.

Danielle was just at the dentist in September. They did x-rays then and her teeth look great, so I'm not concerned about decay. I think either her molars are coming in or they're moving around in preparation for coming in. She'll be 6 in February so she's not too terribly early for them.

I was a little worried that we weren't going to be able to dodge the flu, but so far so good! Let's hope we can keep it at bay!

Monday, November 09, 2009

Reece's Rainbow and the Angel Tree

Many of you who have followed our blog for awhile are aware that we first learned about our girls through Reece's Rainbow. Reece's Rainbow is a non-profit, 501(c)3 organization dedicated to advocating for orphans with Down Syndrome and other special needs. Reece's Rainbow does not act as an agency in any way but simply works to find families for children who are cast aside by their societies because of the stigma of their needs.

A large portion of the work that Reece's Rainbow does is collecting donations to be used as grants for children. There are many families interested in adoption, but oftentimes the cost seems overwhelming. A typical international adoption costs on average about $25,000. While that sounds like a lot, most reports list the average price for a car in 2009 to be $20,000. And if you're going to spend $20,000, is it better to spend it on the life of a child or a new car?

That said, it's easy to get a loan for a car. It's not usually as easy to get a loan for an adoption. There's that small problem of collateral, you see. :) And for most people, coming up with $25,000 in a relatively short time frame--usually one year or less--can be completely out of reach.

That's why Reece's Rainbow works to secure donations, both for children who do not have committed families and for families who are already committed to a child and are working to bring that child home.

Every Christmas, Reece's Rainbow hosts their Christmas Angel Tree. Running from November 1-December 31, 2009, the Christmas Angel Tree is the most important fundraiser of every year, and historically also corresponds to the highest number of children finding their "forever families" as well. Their goal is to raise $1000 or more for each of the nearly 200 waiting children with Down syndrome. When you donate $35 or more for a child on the Christmas Angel Tree you will receive a beautiful porcelain photo ornament of your sponsered child. Last year, my in-laws sponsored a child in my name (Annalise, scroll down to find her) and the beautiful ornament with her sweet face will be hanging on our tree again this year.

The Christmas Angel Tree only highlights orphans with Down Syndrome, but there are many other children waiting for families as well.

Two of the other children who are currently waiting for a family are Cathryn and Connor. Because we like to adopt siblings, I am advocating for Cathryn and Connor this Christmas in the hopes that by increasing their grant fund a family will be able to step up to adopt them. I have added a Chip-in to the side of our blog. By clicking on it, you will be able to donate money directly to Cathryn and Connor's grant fund through Reece's Rainbow. All donations are tax-deductible. Since Cathryn and Connor are not part of the Christmas Angel Tree, you will not receive an ornament for donating to their fund. Perhaps I will try to come up with something I can send to people who donate. :)

And the inevitable question...why don't we adopt them? :) :)

At this point we are not ready to start another adoption. The girls have not yet been home for 6 months. While we do not know if God is finished growing our family, we are not being called to adopt again just yet. But these two children have touched my heart with their sweet faces and the knowledge that they have so much potential in a family with resources to help them. Adopting siblings is a big challenge, but we are proof that it can be done. For us, the benefits to our children of having a sibling who has experienced the same history as they have far outweigh the relatively minor difficulties associated with bring home more than one child at a time.

Please consider donating any amount to Cathryn and Connor. If every person who had ever visited our blog (over 106,000 hits) had donated $1 every time they visited, we could have fully funded 5 adoptions by now! It may not seem like much, but even a gift of $1 can be that extra little push a family needs to bring their child or children home.

If you are not interested in sponsoring Cathryn and Connor, please consider visiting the Christmas Angel Tree and sponsoring one of the other children. They all desperately need the love, care, and hope that families bring. What better Christmas gift could you give to a child than a family?

Saturday, November 07, 2009

What we learned this week

  • Emily is not allergic to bee stings
  • Danielle does very well with sedation when there are no pain meds involved
  • Alex can do his work consistently at school
  • Tim does not have ringworm (it's seborrheic dermatitis--the equivalent of cradle cap...thought I got to miss out on that one!)
  • Impetigo responds well to prescription antibiotic ointment (all 4 of them have it!)
Can I venture to say that it's been a long week??

Wednesday, November 04, 2009

Danielle's MRI

Today was Danielle's MRI on her brain and spine. This was requested by the CP clinic at the Children's Hospital as a standard procedure for all of their patients. We aren't sure what, if anything, it will show, but we should know within the next week or so.

This was a much nicer experience with sedation than her eye surgery. After her eye surgery, she was in pain and couldn't see clearly, plus she'd had strong painkillers and she didn't feel good. This time, she only had an IV sedative (no painkillers) and she woke up really groggy but happy. I actually wished I'd brought the camera because she was so funny. The first words out of her mouth were "goooo....hummm"--she was ready to go! But she had to eat and drink before they'd let us leave. It didn't take her long to get some animal crackers and water down and then we headed out to have lunch with Mark. It's very rare for any of the kids to get to spend time alone with both of us so that was a special treat for Danielle. She really wanted to go back to school but her balance was still a little off so I kept her at home the rest of the day.

Danielle did a great job with all of the doctors and she was more comfortable this time than the last (which was only a couple of months after coming home). As soon as we walked into the prep area (which looked somewhat similar to where we'd been for her eye surgery) she started whimpering but was able to be calmed down and comforted easily. We made a game out of counting how many "doctors" she saw (we counted nurses and techs as doctors too). They did a novocaine patch before her IV placement (in her hand) and as she watched the needle coming in for the stick she kept saying "ow, ow" and then as soon as it touched her and she realized she couldn't feel it she stopped and just watched. She did such a great job and didn't cry at all, although she most definitely would not let me out of her sight. I was fine with that and we did lots of snuggling before the MRI during all of the prep work.

It was once again a great experience at SLCH. I'll post as soon as we hear results.

Sunday, November 01, 2009

Halloween

I must confess to not being a big fan of Halloween. I don't particularly like scary things--there are enough things to scare me in real life that I don't get any pleasure out of artificially scaring myself.

I do remember with great joy, however, my own childhood trick-or-treating--and maybe a bit beyond childhood if I'm truly honest ;). It was so much fun to go with my parents and later my friends and go door-to-door (hoping for as much chocolate as possible).

Since Mark had to work both Saturday and Sunday (yeah, 12 straight days of work for him!) we went to church on Saturday night. We picked up pizza on the way home and then I put the girls to bed while Mark took the boys trick-or-treating around our neighborhood. We'd had a long day with soccer and lots of playing outside and the girls were just wiped out. We did promise Danielle that she could go trick-or-treating next year. She really wanted to go and we simply told her she was still too little.

The boys' costumes were not elaborate to say the least. Tim wore the police coat that Alex wore last year and Alex wore his costume from school on Friday. Friday all of the kids dressed up with a theme for their class. Tim and Danielle's classes both did "community workers" so Danielle wore the police coat and Tim was a "truck workman" (his concoction, which apparently requires a hard hat and a blue shirt). Alex's class was supposed to dress up as someone from the food service industry.

I struggled with what to send him as for awhile. I wanted to make sure it was something where he would understand what his job was. I debated a waiter (using a bow tie) but he's never been to that kind of restaurant. ;) I thought about a chef because he has an apron that will fit him, but I thought it would cause restricted movement at school and be hard to play around. Finally it hit me. He could go as a nutritionist! They've been studying "good" and "bad" food at school so he could understand the basic concept that a nutritionist is someone who tells people which foods are "good" and "bad." I pinned up an old lab coat of Mark's and sewed on a name tag that read "Alexander ..., Nutritionist." I had told Alex I would put his name on it..."Alex ..., Nutritionist" and he corrected me and said no, ALEXANDER ... apparently that's his professional name. ;)

One of our biggest goals for our children is to help them be successful with where they're at. There are a lot of concepts that Alex still just doesn't get. He's been hearing and speaking English for less than 2 years and he still hasn't experienced a lot of things that kids growing up here would have experienced by age 7. By seeking things he can be successful in now, we hope to give him the confidence to continue to grow beyond his past and succeed in all areas of life.

As he was taking off his lab coat Saturday night, he turned to me and said "Mama, I really like this costume." :)