Tuesday, March 30, 2010

Ruby's spider crawl

Ruby is really starting to grow up! She is cruising with great confidence, though not without a few spills. She is tough. Her crawl has evolved into something that looks quite spidery. See...

Monday, March 29, 2010

Birthday month is nearly over. This year Hammy turned 5, Ruby turned 1 and Missy turned 7 just last week. Missy had no trouble blowing out her seven candles. She has plenty of hot air!

No photo shoot is complete without a photo of Ralphie in his chair.

She got what she asked for! ZhuZhu pets!

Next month, Ralphie!

Thursday, March 25, 2010

Did you know?

Did you know that our family is in the process of adopting Alec and Zhenya, two little boys with Down Syndrome from Eastern Europe? Isn't it exciting?!

Did you know that they face a dark future as prisoners of a mental institution if they are not adopted by the age of four? We are in a huge hurry.

Did you know that adoption is crazy expensive? Not out of reach, but pricey to be sure.

Did you know that we could use your help? There are lots of ways. Just ask!

Please visit our adoption blog at www.psalmsixtyeight.blogspot.com and stand with us prayerfully and financially as make this journey.

Monday, March 22, 2010

Feeling a little blue tonight. I'll just share some photos, OK?

My latest project. A baby quilt to give away as an adoption fundraiser. Cute, huh?

I caught Ralph reading to Ruby! The cuteness!
He read a few pages for me, too.

We got Ruby a box for her birthday! Just kidding. But, if we had, it would have been a great hit!
All dolled up for church. Don't you just love the shoes? Size 2! And they kept falling off!

OK, I feel a little better now.

Saturday, March 20, 2010

Ruby's Phone

Ruby got some pretty new clothes for her birthday. She got a new dolly and a book. She also got something that she may never see again, not if Leroy has anything to say about it!

It is a Baby Genius Swivel 'n Sounds Phone. Although recommended for children from ages of 18 months, this toy has been appropriated by my five year old son! With this cute little toy phone a child can pretend to make calls and listen to messages. But, the most fun part is that you can record messages and play them back over and over again.

In the interest of full disclosure, I have not been paid anything for this toy review. I just love this little phone and may have to go out and buy three more for my older children who love playing with baby toys!

Thursday, March 18, 2010

Look who is one today!

I had to work hard to get a great shot of those pearly whites!

What am I doing in Ralphie's chair?

Yeah, what is she doing in my chair?

Oh, now I understand!

She had a great time picking at her cake with a spoon. She is really not very messy at all. What a girly girl!

Starting to walk!

I just love those eyes!
Happy Birthday Ruby!

Monday, March 15, 2010

What is normal?

I've been taking Ralph to a music class for several months now and he likes it a lot. There are echo songs, playing with instruments like jingle bells on a stick, dancing with streamers, and parachute play, too. The only problem is that it is on Monday morning. Ick.

In an effort to be super mom we checked into an additional playgroup for Ralph on Wednesday mornings. It is a group for two year olds. I thought it might be a good idea to see how he would interact with other children in this setting. Socially I'm not really too worried about him. I was more curious.

The flashes of normalcy never cease to amaze me. You would not know to appreciate them unless you had a child with a disability, at least I never did before Ralph. At one point in the crowded playgroup room a little girl was between him and the toy he wanted to get to. Like a little angel, he said, "excuse me" and then "thank you" NOT!! He pushed her aside and I just had to giggle a bit to myself, of course.

Believe me, I hear about kids with Down Syndrome all the time. I head about what kindhearted angels they are. Oh, there is probably some truth to the stereotype, or it wouldn't be a stereotype, would it? But it really sets my child up for failure.

Ralph is a two year old child. He hits, pushes, cries, yells, draws on walls with crayon, sits on his baby sister, gets put into the thinking chair. Yet, he is genuinely happy to meet any person at all. He will blow kisses to the scruffiest, meanest old man. But, an angel he is not.

This is OK. Just like I don't want him excluded for what he is, I don't want him excluded for what he isn't. I wasn't blessed with an angel. He's just a child. I'm not special. You could do what I do, probably much better. Accept it. Acceptance. That's all I want.

Oh, and the playgroup? Not my cup of tea. I think we should savor our mornings together at home right now instead of running from group to group. He's growing up fast and I'll miss these days when they are gone.

Tuesday, March 9, 2010

I noticed very early on in Ralph's life, that many people have very low expectations for a child with Down Syndrome. I'm glad that he wasn't my first or second child or I might have been inexperienced enough to listen to them.

A neonatologist at Ralph's first hospital was one of these people. She insisted that Ralph would have feeding issues and would likely need a surgically implanted feeding tube. Many preemies and babies with DS do indeed have feeding issues, but her attitude made me wonder if some of these problems may be exacerbated by doctors with negative attitudes and low expectations.

Being an experienced mom and used to being in charge of caring for my own children, each of Ralph's hospitalizations were an exercise in humility. Asking permission to feed, to hold, and to bathe your own child is highly unnatural and demeaning. In order to preserve my sanity I learned to play the game.

After his first seven weeks in the hospital, I figured that if Ralph could bottle feed, great, he would be able to come home. If I insisted on breastfeeding him in the hospital it would be long drawn out ordeal to prove that he could gain weight. So I played the game and got him home where he was entirely my responsibility. Then I taught him to nurse in the comfort and privacy of our home.

Did he do great? Nah. But I've learned to adjust my own expectations. I don't need any help.

Now I'm thinking about potty learning. I know typical kids who are not fully trained until Kindergarten or later! I know that the expectation for a child with Down Syndrome is that low or much lower. Says who?

Ralph is showing signs of readiness. He stays dry for long periods of time. He signs "potty" when I change his diaper. He says "poop" and holds his nose when he is dirty. OK, "poop" really sounds like bbbffff, but I can understand him! I can't ignore these signs. And, now that he is not taking Lasix anymore I feel like he has a great chance of success.

I've been thinking so much more about Ralph's future lately. When I think of SSI and Medicare and group homes and sheltered workshops I can't help but think, why? And, says who? He's young and I have the privilege of helping him aim high. We may have to adjust our expectations at times, but that is OK.

I pledge to continue to ignore low expectations for all of my children, but especially for Ralph.

Saturday, March 6, 2010

Zoo time!

We've had such nice weather this week! So nice that we just had to make a trip to the zoo. Our first of the year!

Ralphie cannot yet speak. He tries, but it's just very difficult. Difficult for him to make the sounds. Difficult for me to understand.

Thank goodness we found out about Signing Time videos when he was quite young. Starting with Baby Signing Time Vol. 1, Ralphie started learning signs by the age of nine months. I've been asked how many signs he knows now, but I have not had time to count them all!

The animal signs are his favorite! So you can imagine what fun we had a the zoo. From cows, to bears, to tigers we made our way. Then, at the very back of the zoo, the gorilla! Oh, how Ralph loves gorillas! You'll have to imagine him beating on his chest signing gorilla because I can't download any photos until I get my new computer next week. Trust me, though, it is way too cute!

Thursday, March 4, 2010

My awsome screw-up

Ralph takes several medications as a result of his heart defect and diseased lungs. At one point he was taking six, seven if you count the home oxygen. At one time I needed a spreadsheet taped to the refrigerator to keep track of what to give him and when! Some every eight hours. Some every twelve. When Ralph was ill it was breathing treatments every four hours around the clock. That's fun.

We are so blessed by Ralph's cardiology team. His nurse practitioner is fantastic. It doesn't hurt that we run into her at the grocery store and ballpark from time to time! She trusts my mom intuition. I trust her experience. I have her phone number for any questions that come up, and they often do. How cool is that?

Over last weekend Ralph ran out of one medication. It's a dark glass bottle and it is hard to tell how much is left. No big deal, just call the pharmacy. No refills left. No unit dose - this means that they can't (won't?) give you enough to get through the weekend. And, they can't call the doctor until Monday.

I didn't worry too much because Ralph is on a real low dose and we were going to discontinue this medication next month anyway. Well the pharmacy didn't call me until yesterday to tell me that the medicine was ready to pick up. Four days after I called it in. Five days without it.

I thought about it and decided to call the nurse practitioner. I asked if we could just discontinue the medicine early and explained my mess. I was comfortable with it and...so was she! Woo-hoo!

Since Ralph has discontinued this medication he doesn't need the two others that go with it anymore! We just got rid of three medications in one fell swoop. That's an extra $60 in my pocket each month. I'm so tickled!

One left. Ralph has one medication that he is still taking. If things keep going well, we may be nixing it this summer. Wouldn't that be great?

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Tuesday, March 2, 2010

Making it up as I go.

Tomorrow is End the R-Word Day and later this month is World Down Syndrome Day. I'll be posting more about Down Syndrome this month in observance of these two events.

The moment that Ralph was born and the midwife said the words "Down Syndrome", I had a flash of clarity. It was one of those defining moments. I crossed a threshold. There was no going back to the way things used to be. But it was OK.

Ralph was very sick at first. His lungs were damaged by meconium and I'm sure the Atrial Septal heart defect didn't help the situation. We didn't tell people that he had Down Syndrome. Not until his condition stabilized about 6 weeks later.

I was criticized for this. Fine with me.

I also got into the habit of not mentioning Down Syndrome when we would meet people. I was criticized for this also. Fine. I was always, and I still am, happy to answer questions from curious people. The truth is that most people are too afraid to ask. Too afraid to offend.

Am I ashamed of Ralph having Down Syndrome? Not at all. I just don't choose to define him by his extra chromosome. And I never felt obligated to share it with casual acquaintances.

I don't know if I was right or wrong. I'm really quite new at being a parent of a child with Down Syndrome. He didn't come with a handbook or anything. None of my babies did.

I'm still just making it up as I go.