Ralph - Cardio Update

Ralph is three. He is fun. He has a mind of his own. He is a diaper escape artist. He totally cracks me up!

He gets medicine at 11pm. Here is what I found last night when it was medicine time:

He had shorts on when I put him to bed, but they were obviously not snug enough!

This is what I found this morning when I gave him his 7am meds:

Do you see him? Under the sheet? I'm laughing just thinking about it now. The sheet was still secure at all four corners. I can't imagine how he got under there without ripping a corner of the sheet off. That boy!

Ralph had his cardiologist appointment yesterday. He's a little rock star at the cardio office. All the ladies fawn over him whenever he shows up. Yesterday was no different.

EKG time first. It is always mildly humiliating...the things we have to do to get him to sit still and not pull wires when he gets his EKG. Bubbles, silly dances, anything to get his mind off the wires stuck all over his chest. This time wasn't so bad.

Then came the echo. We took a walk down the hall to the echo room and they already have a Sesame Street video playing. Ralph wanted to watch the video, but he didn't want to lay down to do it! I convinced him but he kept scooting around.

I used to keep my eyes glued to the echo screen, trying to see if I could guess what the doctor would say about the size of his heart and the pulmonary pressures. But, I came into this appointment very confident that these things were improving, so I only snuck a quick glance.

We don't have to wait long for echo results upon returning to our room. Ralph's heart is less large than it was five months ago. Good news! Especially since he has been off his diuretics for about that long.

Ralph's pulmonary pressures have not improved. They are about the same as last time. This is NOT what I was expecting. It's not terrible news, but it is enough to take the wind out of my sails.

Here is the reality: Ralph has pulmonary hypertension. It is a chronic, often progressive, disease. He can grow out of it, sure. He might not. At this point in time, we cannot afford to let his pulmonary pressures increase at all.

I've been sloppy with his medication schedule, thinking that he was doing just great. Well, no more of that. He is back on a strict 8 hour schedule. And his dosage has gone up, since he is growing.

This is not what I wanted my family to have to deal with when I'm out of the country adopting Alec and Zhenya. I need to put together a little check sheet to make sure the important things like medication get done on time. I'll put that on my list. To make a list.

Three years ago today I was dragging my suitcase around a children's hospital. Ralphie and I had a harrowing flight through dying thunderstorms on the hospital's airplane early that morning.

The thunderstorms were not the only thing dying.

My hope was dying. The afternoon before my husband and I sat in a conference room at our local hospital with Ralph's team of doctors. There was not much more they could do for him there except wait. ECMO was available at the children's hospital. A last resort.

I sometimes wonder why I have the need to remember Ralph's dark early days in such detail. I can almost still feel the numb sort of pain.

But when Ralph comes up from playing in the basement and I find him covered in red marker it all makes sense. (He even colored the bottom of one foot!) I can laugh about this instead of getting upset. I can see how far he has come. I can enjoy and appreciate him more, knowing how close we came to losing him.

These days we sit on the steps after school, wave good-bye to the bus, and he shows me what he made that day. Priceless.

Busy Friday

I am looking forward to a busy day tomorrow. First is Richard's "signing." He will be signing a letter of intent to run for his college. Isn't that exciting? I'm supposed to bring cookies to share and you know I'll be there with a camera, too.

In the afternoon I have Ralph's first ever IEP meeting! I hope that it is very straightforward. I know which services he qualifies for. I know what I will fight for now and what can wait for later. Anyway, I will let you know how it turns out.

After the IEP meeting I'm going to start cooking up some enchiladas! I'm making these as an adoption fundraiser. $20 per dozen. I'm still taking orders if you live in the area.

What a busy way to end a great week!


Here is Ralph at school the last day of his testing. He wasn't really interested in me or looking at the camera. He's all about school, a real serious student.

Hanging up his sweater.
Gotta make sure the door is all the way shut!

Picking out a book for circle time!

Last Saturday

Last Saturday we attended the Down Syndrome Society talent show. I missed the meeting last month because our home study visit was scheduled for that day. I've been too busy to practice any talent entries with my children, but it is always fun to go anyway.

We saw some beautiful children dancing, singing, reciting and one duo with a basketball routine. All were wonderful and sincerely appreciated by the enthusiastic audience with generous applause. Ruby and Ralph both love to clap and yell so they were quite happy.

One family brought a drum set for their little boy to play in the show. When he came to the front of the room he had a change of heart. Poor sweetie. The parents coaxed him. His sister showed him what to do. He wasn't having any part of it.

Ralph was trying to get away from me to run up front and get his hands on that drum set. The dad caught his eye and invited Ralph to come up and give it a try!! No coaxing required. He grabbed those drumsticks and started pounding away. The room erupted in yeas and laughter and applause. Then I think he pounded louder.



The other little boy was suddenly interested in playing! I went up front to collect Ralph so his little friend could play. His friend did a wonderful job, too, and was also the recipient of thunderous applause.

My Ralphie. He's amazing.

Preschool testing.

What a fun week it was for Ralph! Not only was grandma visiting but he had a chance to attend school for the first time ever.

If you know me, then you know that I'm a big fan of home schooling. I had imagined that I might keep Ralph at home for his education. But, if you know Ralph, then you know that all this kid wants to do is GO! He is forever grabbing a bag, a hat and some keys and heading to the front door. NOBODY is going to hold this boy back! He's going to thrive in school.

Now that he is relatively healthy, I feel better about him being in a classroom situation anyway. I'm not as freaky about him catching a cold as I used to be. There was a time when there was a sign on my front door asking people to wash hands and remove shoes when they entered. I hope those days are gone forever.

Anyway, school was a huge hit! Even though Ralph missed his normal nap time three days this week, it didn't affect him too much. He was pretty wiped out, but took a shorter nap when he got home.

The teacher did say that Ralph really kept them on their toes! No surprises there. I have also become familiar with the other "R" word. Yep, they have labeled him as a "runner." I prefer to call him opportunist. He sees an open door as a opportunity...for I don't know what. Excitement? Thrill of being chased? Adventure? Sometimes I wish I could get into that cute little head and find out what he's thinking.

Soon I'll be initiated into the IEP brotherhood. I know I have a lot to learn. His meeting is scheduled for April 23 and he will start attending school for real on the following Monday.

Ralphie

Ralphie is taking a very big step tomorrow.

He starts preschool!

OK, not really. He starts his IEP testing at the preschool, during preschool hours, in the preschool classroom. So you see what I mean!

I don't really know what to expect, but I think he is ready. He has been showing some great signs of growing up lately.

Like one day he was standing at the back window watching the other children play outside. His little face was so dejected! I asked him if he was sad. And then, get this, he pulled his face down with his hands and stuck out his lip. That was the sign for sad!! It's possible that he simply signed sad because I said the word. I choose to believe that he is getting in touch with his emotions!

One problem, his testing is in the afternoon during prime nap-time hours. I tried to keep him up today, but he fell asleep on the family room floor. Oh well, I told the school that he is no good in the afternoon, but that is the only time available. On the bright side, if he performs poorly, we may end up with more services!!

IEP in a couple of weeks! My initiation is on the horizon.

Ralph's new horn.

We had a great time playing out back last weekend. It was nice to soak up some sunshine. Someone broke the cute little bell on Ralph's adapted trike so Thomas took the horn off of his own bike to give to Ralph.

Ralph couldn't quite get the horn to work...with his hands anyway. He figured this out on his own! Then I ran to get the camera, 'cause it was so darn cute!

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.

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!

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?

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.

Asking

Ralph just came to me carrying his hearing aid canister. He gave it to me and then started pointing to his ears. How about that?!

So I put his hearing aid in his ear and I sat down to help him play with his jack-in-the-box. He tilted his head while the music played. I hope that he can hear a distinct difference in the quality of sound with the hearing aid in.

Then he spotted the PS3 controller sitting on the side table. He grabbed it and shoved it in my hands and he started to say Caillou!!! Well, I knew what he was saying, but it really sounds like saying ooooooo with your lips pressed together.

We use the PS3 to watch Netflix movies on the TV. He knows that he can watch Caillou whenever he wants. Cool, huh?

I like the ways that he is growing up. Being able to ask for something that you want to do is a really great step.

My day...a long, weird one.

Ralph's transition meeting was good. Very informal. I sat at a table with several therapists and teachers and just talked and talked all about him, which was very easy to do! The room was an unused science lab which is currently used for trike and wagon storage. Ralph and Leroy just played around while we talked.

Everything was going great until Ralph got himself wedged inside a cabinet! I had to jump up and rescue him. Then Leroy got tired of playing with Ralph and started interrupting us, asking "how much longer?" Joy.

Anyway, I really like the school and their program. The teacher is very cheerful and kind, not syrupy sweet...oh that would drive me nuts. The speech therapist is always in the room. How about that? Lots of speech therapy!!

Ralph will go to the school for four days of testing early in April. After that comes another meeting to discuss their recommendations. Then he starts school after he turns three! Four days a week. Wow. WOW!

Today Ralph had an appointment with the audiologist in Kansas City. I really wanted to drive up yesterday and spend the night with my husband, who was working there this week. But, no. I had to do the whole Wednesday night thing...take my kids and their friends to AWANA, go to the grocery store, get Leroy's valentines ready for his party today, help three other kids get started on their valentines for Friday.

So I got up at 5am today to nurse the baby. Back up at 6am to load and warm up the van. I had Ralph changed, dressed, and ready to go when I smelled him. Ugh. Poop already! I guessed that it would be OK to get it over with for the day. After getting gas I rolled out of town at 7am.

After checking in at the hearing & speech clinic and rummaging around in the diaper bag, I realized that I left his hearing aid in the van. Oh dear. This would have been a great time to have a teenager with me. I had no choice; I had to go get it myself. Back down the hall, down the elevator, out the front door, past the guard shack to the van. The cool thing is that the van is too big to go into the parking garage so I get to park next to the guard shack. Easy in, easy out!

The audio visit went well. We made new earmolds. Signed paperwork for a replacement for the lost hearing aid and did a booth test. His booth hearing test went very well. His unaided results were just under the borderline for hearing loss. I was pleased.

We ate lunch in the cafeteria after the appointment. It was crazy busy and I was pushing this massive double stroller and trying to balance a tray. Ralph kept trying to pat the lady in front of us. Once, she got goosed real good and everyone in line had a great laugh. I was in luck because Thursday is the only day they have sweet potato fries. I LOVE these.

Ralph refused to eat so Ruby and I shared the fries. He did drink the milk, though. We hiked back to the van to load up. I took some time to change diapers, but Ralph was still dry. Hmmm.

We had to drive through Topeka on the way home to pick up some certified birth certificates. I didn't feel like paying for the toll road so I decided to take the old highway. I was driving along on 435, out by the speedway when I noticed a man about to run out into traffic. Oh dear!

Then I noticed he was a police officer. He was dragging something. It looked like he had a dog by the collar. I starting to freak out because he is running out into traffic...I'm driving about 70 and he's running into my lane! I start to slow down and he throws something into the far left hand lane.

Stop sticks! I was about to swerve to the left to avoid hitting him when it dawned on me what was going on. Just then a car came flying around me on the left and hit the stop sticks and kept on flying. Several patrol cars were hot on his tail.

Meanwhile, the officer that threw the stop sticks was pulling on the string and trying to get the heck off the highway. He turned, slipped on some sand, and fell on his side. This all happened within a matter of 10 seconds. By this time, I'm stopped. In the middle of the highway. Not quite sure what to do.

I guessed it was OK to keep going, so I did. A couple of miles ahead I found that the officers had the guy at gunpoint and traffic was crawling by very slowly. What a strange day.

After that mess, I was happy to get on the old highway and poke along. It was nice to not have to be in a hurry. When we parked at the state office building I got the stroller out and started to get Ralph out of his seat. He was soaked. And stinky. Sigh.

It was a ten wipe mess. And Ralph was wearing tights under his pants. And I didn't bring extra socks. I ended up strolling into the office with him wearing a coat, but no shoes or socks. Ridiculous. I shouldn't have worried, though. I wasn't the strangest person there, by a long stretch.

I love to people watch when I'm in a government office. One lady's ID was expired. The lady at the window was so patient and kind to her. Not your typical gov't agency type of gal! The woman with the expired ID ended up emptying her whole purse for the lady at the window trying to find bills, insurance cards...anything to use for ID.

We were out of there before long and on our way home. Can you guess what I found when I got Ralph out of his car seat at home? If you said a poopy mess you are right! That boy. Looks like diarrhea again.

I had to leave and go to the grocery store for valentine candy. I promised the kids that if they were good while I was gone that I would get candy for them to tape onto the valentines for their party tomorrow. I picked up some Gatorade for Ralph while I was there. I hope this poopy stuff goes away soon.

Big day for my big boy.

Tomorrow is a big day. I think.

I have Ralph's transition to preschool meeting tomorrow. I have very little idea of what to expect. I'm having visions of me trying to listen and pay attention but having to jump up every two minutes to chase him down the hallway!

Preschool. He is so ready. But he is so little still!

I wish that he could be a baby a little longer, but that is just not his style. He wants to be where the action is. He wants to read. He wants to tie shoes. He wants to put on his shoes and coat and GO!

At one time I had thoughts of homeschooling Ralph. Now I don't see how he could be satisfied at home. But, I'm just not ready to let him go.

Leftovers

Ralph has developed some other nice skills lately. He is working on jumping using a mini-trampoline. I found a fancy one with a bar and music and stuff on Amazon before Christmas but it just didn't fit into the budget. Can you say craigslist? Got a nearly new one for a ten-spot! All the kids love it. They get on with Ralph, hold his hands and show him how to bend his knees and jump. He's really getting it!

Another skill is walking backward. This is a skill, isn't it? I caught him being silly yesterday, giggling and walking backward. Too fun.

But the most useful skill he has recently developed and the skill that has me going bonkers is this: shaking his head "yes" and "no." He is using this skill quite a lot when it comes to food and drink, oh, and bedtime!

On another note, my carpet sucks. (I was a sucker for a too-good deal.) It looks like a dirty, old stray poodle mix. It was the most beautiful, shiny, soft, fluffy carpet once upon a time. But many children, a dog or two here and there plus three years have taken their toll.

I would so love to have some really high quality carpet in my front room. But I still have messy little children. And, come to think of it, messy big boys, too. I can't justify spending that kind of money when my heart is set on adoption.

On Thursday I finally went berserk when my dog would not quit barfing. He made spot after spot all over the place and he didn't even have the decency to lick it up! I ran down to the hardware store and rented a heavy duty carpet cleaner.

Have I mentioned how much I love this little hardware store? I had to run up there on Saturday because the dog (same bleepin' dog) broke his line and I needed to replace it right away. I pulled into the parking lot at 5:30pm, thinking that they were open until 6pm. But, no. The sign said closed.

I started to turn the car around when I saw a man inside waving his arms wildly. It was Tom, the owner. He was waving me inside! I parked the car and hurried inside, knowing that he was probably bone tired and ready to get home. He told me that he hates for anyone to have to drive into the city because he was closed. I told him that I would just as soon spend my money there anyway.

Where was I? Ah, the carpet. I worked on the living room for a couple of hours. It was just gross. Worse than I thought it would be. I was surprised at how much better it looks after a mediocre cleaning job. Not too bad.

So, back to Ralph. He has an appointment with his audiologist in Kansas City tomorrow afternoon, but tonight he is running a fever. We've been waiting for this visit for over a month, but I may have to cancel. Either way I'll have some sweet pictures to share tomorrow!

We have mama!

Ralph has developed a habit of covering his mouth when he laughs. It's cute in a little geisha sort of way, but I have no idea where he got the idea. Does he have the self awareness to be bashful?

So here he is giggling. Of course I was trying to get a photo of his serious face. One of Ralph's brothers says that he looks like baby Spock since I trimmed his hair last week. Do you see it?

Ralph started to say mama last week! I didn't cry, but almost. He only says it when he is in his crib and he is crying to get out.

We have had the most incredible weather lately. Fog, fog, fog. Day in. Day out. Our part of the country is known for incessant wind and bone dry air in the winter months, so this was really hard to believe.

One morning the ice fog made the whole landscape a fairy land. Those spikes are ice crystals! I touched some and they disintegrated instantly, they were so delicate.

Freaky ice fog.

More Ralph for your viewing pleasure. No hands over the mouth this time! (Can you ignore the messy shirt? He IS eating.)


I got a lot of stuff going on right now. Some of I can share with you and some of it I cannot. Look for some exciting developments soon!

Good news!

Dawn. Not always my favorite time of day. But, a view like this makes getting out of bed a little easier.
Ralph had a great visit to the cardiologist on Wednesday. For the first time ever, he walked in under his own power. He stood on the big scale and not the one with the baby seat. He stood by the wall for the nurse to measure his height instead of her using the measuring tape.

He let her take his blood pressure and pulse ox. He only ripped of an EKG probe twice...he's NOT a perfect angel! The echo was like a rodeo. I have to laugh when I think about how much wiggling and bucking he did. It is a wonder that any decent measurements were taken.

Apparently, the measurements were good enough for the doc. He would have taken us back to redo the echo himself if they weren't! His pulmonary pressures measured normal.

Normal.

That's a word we don't hear around here all that often. It has a nice ring to it! We are cutting back on Ralph's heart meds over the next three months and then stopping them. He goes back for a recheck in six months.

You can take your pulmonary hypertension and shove it!

One year ago...

A year ago, approximately.
It's hard to remember adjusting the cannula a thousand times each day. It is easy to forget all about changing tanks and tripping over tubes. It seems like a far off dream.

There is the one keyboard that Ralph has never destroyed!

I never knew about Pulmonary Hypertension before Ralph came along. Now I know more than I care to. When Ralph sees his cardiologist tomorrow I hope to hear that his PH is history. I hope to hear that he has grown out of it. He's been off of oxygen for nearly one year and has done well. The next step is weaning heart medications, IF his pressures look good tomorrow.

I've been disappointed before. But I never lose hope.

Guess who?

Guess who was playing in the laundry pile? Yeah, there is a pile of clean laundry on the couch. Someday I'll have my folding counter installed in the laundry room and that will never happen again, *wink*.


Ralph decided that he would dress himself. Never mind that he was already dressed in sweatpants and a shirt. He added a dress, a sweater and a hat. It is hard to tell from the photo, but he is wearing a visor bandolier style!

He did a great job dressing himself! Also, I've begun to teach him to pose for the camera. Another necessary life skill, don't you think?

Happy New Year

Happy New Year to you!

I've been out of town for a few days and my senses seem to be a little off. I cannot seem to grasp what day it is without thinking for a moment. I'm thinking this will resolve once the kids are back in school and dad is back on the road.

I was just telling dad the other day that this is going to be a great year. My heart is so full of love and plans and schemes. (Yep, I'm planning and scheming with my heart!) It is hard to know just what to do first.

The message in worship this morning was the first in a sermon series called the Amazing Race. Don't you just love that show? I would be perfect for it, by the way! Anyhow, I thought that was a great title for a sermon series because I've been thinking recently of my life as an amazing race. (Maybe this has something to do with my upcoming birthday?)

I have so many things on my bucket list!! And, I only have this one life to live!!! I'm feeling a huge sense of urgency. Honestly, though, the bucket list has changed drastically since Ralph came into my life. All the new things on the list seem so very important. Having a medically fragile child has opened my eyes (and heart) to many truly important things.

Speaking of medically fragile, Ralph is looking so good that I probably shouldn't be using that term anymore. He has an appointment with his cardio in a little over a week. He hasn't been seen for six months. I can't wait for him to walk into the office on his own. The team is going to be blown away!

I'm praying for good EKG and echo results. If everything looks good we might be able to start weaning some medication. Wouldn't that be great?

More photos soon. Promise!