Wednesday, July 30, 2008

Feelin' a little bit crazy

5 Minutes for Special Needs

Just a cute little crazy babe to share today.

Sunday, July 27, 2008

Unlikely first words

A few months ago I know Ralphie yelled "Maaaaa" a couple of times when I would leave the room. Lately I haven't heard this. We work on saying mama all the time, but nothing.

While we were waiting in the exam room at the doctor's office on Friday, we had to get creative. My oldest son and I ended up playing catch with Ralph's Elmo doll. Rose was with us, too, and I know that the whole office could hear us. Ralph would CRACK UP when Wesley tossed Elmo and I helped him catch. Then Rose would squeal in response to Ralph. Wesley and I would laugh in response to her! This game helped to pass much time.

This is the Elmo doll Ralph received on his birthday from the nice lady in the waiting room at the hospital. She felt so bad about him being sick on his birthday that she bought this Elmo at the gift shop and sent it up to Ralph's room. When I first gave him the doll, he grabbed Elmo's hands and proceeded to make him pat-a-cake!

We love pat-a-cake. We play it all the time, but I was still surprised that Ralph made Elmo play it. I was even more surprised on Friday to hear Ralph say PAT-A-CAKE! I thought I was hearing things but Rose and Wesley heard it, too. It sounds a little like tah-tah-take! For a baby who doesn't say mama or dada yet, I think these are unlikely first words.

Saturday, July 26, 2008

You know you're in trouble when...

You know you are in trouble when the nurse offers you all a can of soda. Dr. Pepper? Sure, we have that. Sprite? OK. Ralph's cardiologist appointment was originally scheduled for 9 a.m. yesterday but something came up and they asked us to come at 3 p.m. I hate afternoon appointments. They just seem to take forever when the clinic gets backed up and Ralph gets cranky if he misses his afternoon nap.

You also know you are in trouble when the echo tech asks you to wait in the echo room, just in case the doctor wants to take some more pictures. I tried to give Ralph an early nap, but nothing doing. The echo seemed to take forever and when Ralph finished his bottle he just couldn't handle any more handling. I know, by now, some of the things that the doctors are looking for on the echo and I didn't like what I saw. It couldn't be right.

Well, the doctor did want more pictures but Ralph was melting down by now. He took some quick measurements. I was right, his pulmonary pressures were high. Very high. Two times higher than two months ago. How did this happen? I was so certain that the heart repair would help bring the pressures down! Pulmonary Hypertension is so silent, so evil. How could I know?

The rest of the visit was very rushed and I didn't get my questions answered. And, this is weird, the doctor asked me when I want to come back! I think I must have just looked at him like I didn't understand, 'cause I didn't. Then he said, "One or two months?" One! By then it was after 5 p.m. and I was late to pick up James at the airport. Ugggggh.

So here we are. The doc wants to be aggressive. We have upped his medications and upped his oxygen to 1 liter. The good news is that his heart is much smaller that it has been in a long time, I didn't want to forget that. We just still have a long way to go with the lungs.

Thursday, July 24, 2008

Little Mommy

One of my favorite things about parenting is delegating responsibility. When it comes to regular chores, forget about getting Rose to help without putting up a fight. But, when it comes to baby care she is more than willing to help. Whether it is diaper changes, organizing toys, dressing or giving a bottle she is game.

Yesterday I was busy with something, don't remember, so I handed her a jar of baby food and asked her to go feed Ralph. You should have seen her eyes light up! I haven't seen her this motivated since the day I asked her to come tell me if anyone was being naughty in the basement playroom. Little girls crack me up!

So I snapped this hilarious picture a few minutes later. She did a great job feeding. She only dropped a couple of glops and had the whole "open up and take a bite" face down pat.

Wednesday, July 23, 2008

Wordless Wednesday

Do I really have learn to walk?

Tuesday, July 22, 2008

Hot hot hot

Finally, it is getting hot here. All of a sudden it feels like summer! Maybe my grass will stop growing so fast-the mower died over the weekend.
The kids and I went to the pool today while Ralphie napped. We took a couple of turns on the lazy river. I taught Rosie how to push off the wall to get going underwater. It wasn't very crowded at all.

While I was working with Rosie, I noticed a mom helping her daughter walk in the water. The young girl looked about eight years old and she appeared to have Cerebral Palsy. I was so happy to see them at the pool. Sometimes I just watch people at the pool and I wonder where all the kids with DS and other disabilities are. I know they exist. I just hardly ever see them in public and I am fairly observant. Oh well, I was just thankful for this beautiful mom and daughter.

Monday, July 21, 2008


I took everyone to Target today. We were out of diapers and Leroy needed some new shoes. In the shoe department:

ME: Wow! Look, they have jellies! I haven't see jelly shoes since I was in high school.

LEROY: Do they have peanut butter shoes?

He is brilliant in an odd sort of way! He spent the next 15 minutes singing about peanut butter shoes! I did buy some jellies for Rose. They were on clearance for $1.97!

Saturday, July 19, 2008

Extreme Makeover

Wesley was invited to a friend's wedding today, so I thought he would like to look more presentable. We spent the morning shopping for some new duds and getting the Triple Play Haircut at Sport Clips. The change is remarkable! Just take a look-



A little less hippy. A little more hip!

Friday, July 18, 2008

Chip in for Raina!

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you.

James 1:27 (New Living Translation)

You can win a Blackberry Curve and support an orphan in Bulgaria at the same time! Many of you are not aware that orphans in Eastern Europe do not have access to proper medical care, therapies and schooling. Once they are transferred to a mental institution (even for purely physical disabilities) at age 4-5 they generally die within the first year there. It's a life and death situation.
HERE is what Shelly is doing and why you should care:

I am giving away my Blackberry Curve. It is in excellent condition....I've had it less than 6 months and always carried it in it's case. It works with a T-Mobile SIM card(and I'm sure it can be unlocked for other carriers). When we changed cell phone providers, I decided to downgrade to something cheaper. I sold my husband's identical phone on ebay in less than 5 minutes for $170. I decided to give mine away instead.

So, here's the deal:On July 27th, I will pick my Xander up out of his bed, kiss his chubby little cheek.....and thank the Lord for putting him in my arms one year ago. To honor that moment one year ago, I am auctioning off my Blackberry Curve with every penny of the money raised to go into the grant fund for
Raina, who is waiting in Bulgaria. Raina, like Xander, has Down Syndrome and clubbed feet. She is destined to live her life confined to a crib unless a family takes a leap of faith and adopts her into their family.

So, here's how this is going to work. There is a Chip In widget over on the side of my blog. A $5 donation made through that account will enter your name in the drawing. You can enter as many times as you want....each entry requires $5. The auction will end on July 27th and Xander will draw the winner himself. Every penny of the money in the chip-in account will go to Raina.....and someone will get my Blackberry Curve. You can keep it, resell it yourself....whatever you want to do with it. My intention is to get some money in this little girl's grant fund.

If you are reading this and you blog, PLEASE mention this on your blog. You can even put the widget on your blog too. You can get the code
here. Some of you that read this get hundreds of readers a day on your blog. My prayer is to raise at least $500 for Raina's grant. That's going to take 100 entries. My husband thinks I'm crazy and I'm going to give my Blackberry away for like $20. Help me prove him wrong and raise some money for this little angel who's waiting on a mommy and daddy to call her own!!!!
Posted by Shelley at
2:15 PM

Water day.

Today was water therapy day for Ralph. The local YMCA donates the pool and lifeguard time to the Rainbows kids twice a month. Isn't that nice of them? There were about 30 kids there today, plus parents and siblings. I always feel good around these people. Even in my bathing suit! There is a sort of unspoken understanding between parents of special needs children.

The therapists split us up into two groups. First Ralph worked with his therapist one-on-one with walking in the water. I hold his hands and the therapist moves his legs under the water as we all say "step, step, step..." He doesn't get that he needs to bend his knees to take a step. I worked with him by myself for a bit. He really did great taking some robot-like steps on his own. Imagine walking with your knees locked and you'll know what I mean.

The groups switched and we went to work with our group along the wall of the pool. First, front and back swishes...swishing our children back and forth in the water as we walk across the pool. Quick swishes for children with low muscle tone and slow ones for children with high muscle tone. Then front and back kicks. I lay Ralph face down on one of my shoulders while I hold his legs. I help him kick as we walk across the pool. Back kicks were a challenge as Ralph just wanted to lay back on my shoulder and grab his feet!

We also did sitting dives and jumping off the side and pushing off the side. We wrapped up the session with both groups in a big circle. We sang some songs like Itsy-Bity Spider and Teddy Bear, Teddy Bear. Ralph liked this part a lot best, I think. We worked on walking a bit more before we dried off. What a fun morning!

Tuesday, July 15, 2008

Heart baby, heart dog

Ralph has been so active lately, it can be frustrating. The cannula is nearly impossible to keep on him anymore when he is awake. And, from monitoring him when asleep (the only time he keeps the probe on) I know that he really does need it. I'm afraid to use the stickers after I found he had pulled one off and was storing it on the roof of his mouth! But, is it fun to watch him go!

He prefers to belly crawl on the carpet. But, once he hits the hardwood it is hands and knees! He loves to kneel by the front window and look out. He pulled up to standing in his crib today! I knew that he could do this. We had not yet moved his mattress to a lower setting because he wasn't yet pulling up. But, he scared me last Thursday by standing on his knees and leaning out of the crib! I spent the next hour fighting stripped screws to disassemble the crib and move the mattress lower while everyone else watched a movie! It couldn't wait, though. Ralph needed a nap and I could just imagine him bailing out once I laid him down.

On another note, our dog, Gunther, got his first heartworm shot today. I still don't know how I'm going to keep him on cagerest for the next 2 months, but we will try. He is a sweet dog, even if he does have a weakness for wet and dirty diapers! Now I have a "heart dog" to go with the "heart baby." Incidentally, "dog" is one of Ralphie's favorite signs along with "daddy." Hmmm.

Monday, July 14, 2008

Eye doc - great news!

Ralph went to Dr. Lamp today for his first dilated eye exam. I can't say enough nice things about Dr. Lamp, he is just great. It turns out that Ralph's eyes are developing normally. He has nice big optic nerves and is just slightly far-sighted, which is normal at 14 months of age. He doesn't need glasses and doesn't need to have another exam until he is 3 years old!

Here is a picture of Richy helping Ralphie learn to walk.

Ralph had a fever on Saturday, so we had cake and ice cream for Wesley on Sunday instead. I used to ask the children what kind of cake they wanted for their birthday. Then I would find a way to make whatever they asked for. I've made airplanes, baseballs, school buses, turtles, and R2D2 to name a few. Well, over the past few years I've ashamedly bought grocery store cakes!

This year I decided to see if I'm still creative enough to make a fun cake. Though Wesley didn't ask for it, I made him a pirate cake. I know it is kind of a kiddy cake for a nearly grown man, but it was fun to make.

Saturday, July 12, 2008

What the heck happened?

Our firstborn, Wesley, turned 17 today. We were only kids when he was born!

I see a lot of Ralphie in him, don't you? James did a double-take when he found this picture!

He was the most laid back baby ever. He LOVED his playpen and would play contentedly in it for hours. He had a knack for spinning fantastic lies stories at an early age to make sense of the world.

It seems like yesterday that we brought him home from the hospital, two months and three surgeries after he was born. He was the only full-term baby in the NICU.

More than a few people refer to Wesley as a "walking encyclopedia." He's been a voracious reader for many years. Now he is turning his natural talent for storytelling and his love of reading into a writing career. Check out for a taste of his work. My little baby boy is suddenly a man.

Yeah, he still knows how to smile. You just have to be fast to catch it!

Sunday, July 6, 2008

Church, grocery store, pool. My Sunday.

Today Ralph and I were introduced to a woman named Amy. She is the youngest of 9 children. She also has DS. I asked her about her family and where she lived and stuff. I was so pleased that her speech was easy to understand. Then she looked at Ralph and said, "You look like me!" I just had to laugh.

After church I had to run to the store for a couple of things. I was looking at the day-old bread rack when an older woman who was handing out samples about 10 feet away asked me, rather loudly, "What is wrong with your little boy? If you don't mind me asking. I've never seen a baby on oxygen."

Well, I didn't mind her asking at all. It is kind of nice, in fact. I don't try to hide Ralph. When we need to go to the store, we go. I'm sure we are rather conspicuous, but no one ever says anything. OK, no grown ups. Occasionally a little girl will whisper,"poor baby." So, I chatted for a moment with the sample lady and went on my way smiling.

I took a few children to the water park at the YMCA tonight. Rose nearly taught herself to swim tonight! She normally acts timid so I was very impressed. Leroy is more cautious in the water than you might think. Funny. The swim must have really relaxed him because he fell asleep on the floor of the family room not long after we got home.

Friday, July 4, 2008

Ralphie's got talent!

We are sitting here tonight watching the National 4th of July celebration from Washington D.C. on PBS. When the opera singer opened the show by singing the national anthem Ralphie grabbed his xylophone and started tinking. It sounded pretty good! Now Huey Lewis is on singing "The Heart of Rock and Roll." Ralph is still playing. This kid LOVES music!

We took him off of the oxygen for a while tonight so we could all be together outside having fun with fireworks. The weather was nice, comfortably cool with a slight breeze. He looked great, he always does. I can never tell when he is running low or not. I brought him inside after a while to spot check - 93%. Not bad!

I need a big playpen.

But all I could find at the big box baby store is pack-and-plays. When my oldest was a baby I had a huge playpen for him. He loved it. He used to press his face against the mesh and giggle and smile a little smashed smile. I've got pictures somewhere...

So they say, necessity is the mother of invention. He is the new jumbo sized playpen!

I close all the doors in the hallway and gate it off. I can see him from the kitchen as well. This is not as inventive as our cardboard box bumbo table or pringles can leg braces, but it works great. Now that Ralph is crawling like a champ, I need a safe place to drop him while I cook lunch or iron shirts. Guess who thinks confinement is cool? Rose and Leroy demand to be in the "playpen" with Ralph!

Happy 4th of July!

Today is also Richard's 16th Birthday. He is an incredible young man but he started out kind of rough! He was born with an attitude. I joke that he scared away our free babysitters because he cried so much, but it is true.

He turned the corner at about the age of eight and started helping me with laundry and dishes. Now he works three different part-time jobs and is honing his baseball skills in hopes of playing college ball. Also, I never have to tell him to clean his room!
Happy Birthday Doodlebug!

Tuesday, July 1, 2008

Pity party.

I'm just feeling sorry for myself today. Want to join me? Never mind that Ralph's heart has been fixed and he is doing great. Why can't I think about that?

I took the little ones to vacation Bible school this morning - Chipper, Thomas, Jordan, Rose and Leroy. Chipper is helping with story time this year, so they all get to go at 8:15 for bagels and juice. I was really looking forward to a couple of hours to get my insurance/doctors/bills phone calling done. Maybe I'd even have time to clean up the kitchen!

Nope. The phone rings at 8:45am. I need to come pick up Leroy, he is being naughty. What do you do with a 3 year old kid who gets kicked out of Bible school? I guess there is still time to turn him around. Thomas used to pull the same kind of stunts and he's turned out OK.

Oh yeah, the mower is billowing smoke so I had to take it in for repair. This is really shameful...more than crying to get out of a speeding ticket - I brought Ralphie inside the shop with me. He is so cute and yet pitiful at the same time with the oxygen and all. I was sort of hoping he'd feel sorry for us and make me a great deal. I know, shame. But, with all the rain we've had I'm going to get a notice from the city if the mowing doesn't get done! Like I need that.

We ended up borrowing a mower from our super nice bee keeper neighbor. It is good to have friends, isn't it. Oh, the UPS man just came! Ralphie's new sat probes have arrived. I've not been able to monitor him for a few days now after he chewed the last one up. All of a sudden I'm feeling better.