I was curious to know exactly how many viral infections Elijah has gotten since last August, which is when he got his first of the season. I'm pretty consistent about labeling all of my posts, so I pulled up all of the ones with the labels of sickness and croup. How totally yucky that there are 70 total posts with these two labels.
Between 8/8/08 and today (a span of eight months), Elijah had TWELVE viral/respiratory infections, five of those turning into croup and ALL of them involving a wretched cough.
Is this normal? I mean, he does go to daycare so he is exposed to plenty of germs there. Although we are always careful about germs, we have never been super strict and we typically take him freely out in public. But still, it just seems like this is beyond normal. I am wondering if we should have his immune function checked out? We have a pulmonology appointment coming up, so I will address my concerns then.
That's all I have right now, just a quick sickness lament. It is supposed to get nice again this week, so hopefully soon we'll have fun, outdoorsy pics and stories to share!
Tuesday, April 28, 2009
Monday, April 27, 2009
Sunny skies and warm weather, COME BACK!
As always, the weekend went way too fast. We ended up not participating in the Heart Walk (again) this year because of the weather (again). Elijah still has this lingering sickness, so we didn't want him to be out in the cold for too long. I was bummed. Maybe one of these years it will actually work out.
Instead, we went to the MOA and walked around a bit just to get out of the house. Elijah rode on a tiny little ride that went around in circles and he liked it. Yesterday morning we went to Ikea and bought a book shelf/tv stand and a desk for our bedroom. We haven't had a chance to put them together yet, but this will be the first step toward a clutter-free house. Our bedroom is a gigantic mess right now, so I'm really excited to get things organized.
Elijah is still coughing, but it continues to get a tiny bit better every day. He was such a super Mama-clingy boy all weekend (which is just fine with me). He wants me to be close to him or holding him at all times. He loves it when I dance around the room with him in my arms as we listen to his Bullfrogs & Butterflies CD. Every time I sit down to rest, he ferociously signs MORE MORE MORE until I continue with the dancing. He is not a light child, so it's a bit tough for me to go for very long, but WOW, does he love it.
Yesterday evening Dan and I brought Elijah to Grandma's while the two of us went out for dinner. It has been a while since we've been out alone, so it was really nice. We stuffed ourselves with Mexican food and yummy margaritas and then we warred in Pac-man. I got beat! I can't believe how good he is getting. I used to beat him all the time!
Here's hoping for a nicer week so we can get out of our house again. Thanks for checking in..
Instead, we went to the MOA and walked around a bit just to get out of the house. Elijah rode on a tiny little ride that went around in circles and he liked it. Yesterday morning we went to Ikea and bought a book shelf/tv stand and a desk for our bedroom. We haven't had a chance to put them together yet, but this will be the first step toward a clutter-free house. Our bedroom is a gigantic mess right now, so I'm really excited to get things organized.
Elijah is still coughing, but it continues to get a tiny bit better every day. He was such a super Mama-clingy boy all weekend (which is just fine with me). He wants me to be close to him or holding him at all times. He loves it when I dance around the room with him in my arms as we listen to his Bullfrogs & Butterflies CD. Every time I sit down to rest, he ferociously signs MORE MORE MORE until I continue with the dancing. He is not a light child, so it's a bit tough for me to go for very long, but WOW, does he love it.
Yesterday evening Dan and I brought Elijah to Grandma's while the two of us went out for dinner. It has been a while since we've been out alone, so it was really nice. We stuffed ourselves with Mexican food and yummy margaritas and then we warred in Pac-man. I got beat! I can't believe how good he is getting. I used to beat him all the time!
Here's hoping for a nicer week so we can get out of our house again. Thanks for checking in..
Friday, April 24, 2009
Friday yay
Wow, what happened to the week? No complaints here. I welcome the weekend with very open arms! Some fun things happened this week. First of all, look at the cute monkeys my sister sent to Elijah. I love them!
A monkey man bag.
Jasper, Pogo and Gabby.
The nice weather coupled with the realization that Elijah is completely and utterly IN LOVE with the outdoors AND with speed (the act of moving quickly, not the drug) compelled us to buy a jogger/bike trailer this week. We found a good deal at a garage sale, so we jumped on it. Elijah loved being pushed in it last night, and he appeared to love the quick bike ride tonight.
This is what Elijah does when we open the front door. He sits at the edge, gazing longingly out into the wide open outdoors.
Elijah got his AFOs this week! They are much much smaller than I imagined them to be. You can just barely see them sticking up out of his shoes. So far he is tolerating them well. I'm so happy that his little ankles have a little more support now.
We decided at the very last minute to participate in this year's Heart Walk, which is tomorrow morning. Last year we got snowed out (yes, at the end of April), and this year isn't looking much better. I guess if it is raining too hard we may not be able to make it, so we're praying for the rain to hold off. I really want to walk in honor of our little boy!
The Cough denied our letter, that jerk. We still have him as a house guest. At least I wasn't forced to sleep in the closet this morning. Progress!
Dan is out celebrating a friend's birthday with a lot of the people he went to college with. Elijah is asleep and I am headed into the living room to read Harry Potter Book 5 and then watch a girly movie. :) Have a great weekend, everyone! Thanks for checking in.
A monkey man bag.
Jasper, Pogo and Gabby.
The nice weather coupled with the realization that Elijah is completely and utterly IN LOVE with the outdoors AND with speed (the act of moving quickly, not the drug) compelled us to buy a jogger/bike trailer this week. We found a good deal at a garage sale, so we jumped on it. Elijah loved being pushed in it last night, and he appeared to love the quick bike ride tonight.
This is what Elijah does when we open the front door. He sits at the edge, gazing longingly out into the wide open outdoors.
Elijah got his AFOs this week! They are much much smaller than I imagined them to be. You can just barely see them sticking up out of his shoes. So far he is tolerating them well. I'm so happy that his little ankles have a little more support now.
We decided at the very last minute to participate in this year's Heart Walk, which is tomorrow morning. Last year we got snowed out (yes, at the end of April), and this year isn't looking much better. I guess if it is raining too hard we may not be able to make it, so we're praying for the rain to hold off. I really want to walk in honor of our little boy!
The Cough denied our letter, that jerk. We still have him as a house guest. At least I wasn't forced to sleep in the closet this morning. Progress!
Dan is out celebrating a friend's birthday with a lot of the people he went to college with. Elijah is asleep and I am headed into the living room to read Harry Potter Book 5 and then watch a girly movie. :) Have a great weekend, everyone! Thanks for checking in.
Wednesday, April 22, 2009
Neurology and a very important letter
Dan brought Elijah to his neurology appointment this morning. It sounds like it went well. I really wanted to be there, especially since it was the first one, but I can't afford the time off work. So, the following information is being delivered second hand..
Dan really liked the neurologist. He said he was thorough and laid back and very warm. After doing an exam, Dr. J expressed that he really doesn't think Elijah has suffered any brain damage (from his previous low oxygen saturations or surgeries/medications, etc.) or that he will struggle cognitively at all. The only real worry is his lagging gross motor skills and his low muscle tone, and even these issues do not seem like they will be long-term concerns. To make sure, though, he wants to run an MRI on his brain and spine (on May 11th). They will also perform a muscle test where they draw blood straight from the muscle to check for abnormalities. A urine test and a metabolism test will be done as well. I don't know the details of these, but the doctor said he really doesn't expect to find anything wrong, so maybe I'll never need to know details. Let's pray that he is right!
His best guess is that in a few years, our little munchkin will be all caught up with development. As always with Elijah, patience is the key.
-----------------------------
On another note, aisogh a[owieyt. Oh, woops! I just fell asleep on my laptop. Elijah's cough/cold symptoms started up in full force again in the past couple days, so we're all a little drained. This cough! I want to hurt it so badly. Maybe I'll write it a letter instead:
Dear Loathsome Cough of our Precious Elijah,
I feel I must enlighten you regarding the fact that you continue to make Elijah feel crummy, and that you are making us a very sleep-deprived little family. Neither of these things are issues that we want to have in our lives, so I'm going to go ahead and ask you to leave immediately.
Since there is no medication we can give Elijah in order to get rid of you, we unfortunately have to let him endure your wrath as we grit our teeth and punch our heads. This is especially difficult during the night because there is this thing called SLEEP that we all need in order to function, and if we are repeatedly punching our heads, sleep does not come easily.
This morning, being sleep-deprived already (thanks to you), and knowing I had to go to work in a few short hours, I resorted to sleeping in the closet from 4:15 until 6:30 because that was the only place in the house where you, the dreadful Cough, could not be heard. It is quite rude for a(n unwanted) guest to force me into my own closet to unite with sleep, don't you think?
Elijah has been extremely patient with you. He has endured you with dignity for your very extended visit (don't you think August through April is a bit long to be a house guest?). Although he is too polite to admit it himself, you have caused his little body a lot of disturbance and stress. So, back off, would you? Give the kid a break.
In a nutshell, WE DON'T LIKE YOU. We wish for you to leave and never return. We don't care what happens to you once you leave. Please don't write.
Signing off through very blurred and bloodshot eyes (thanks to you),
Elijah's mama
p.s. You can take your cousin, Green Snot, along with you. Both of your suitcases are out on the curb, ready to go.
Dan really liked the neurologist. He said he was thorough and laid back and very warm. After doing an exam, Dr. J expressed that he really doesn't think Elijah has suffered any brain damage (from his previous low oxygen saturations or surgeries/medications, etc.) or that he will struggle cognitively at all. The only real worry is his lagging gross motor skills and his low muscle tone, and even these issues do not seem like they will be long-term concerns. To make sure, though, he wants to run an MRI on his brain and spine (on May 11th). They will also perform a muscle test where they draw blood straight from the muscle to check for abnormalities. A urine test and a metabolism test will be done as well. I don't know the details of these, but the doctor said he really doesn't expect to find anything wrong, so maybe I'll never need to know details. Let's pray that he is right!
His best guess is that in a few years, our little munchkin will be all caught up with development. As always with Elijah, patience is the key.
-----------------------------
On another note, aisogh a[owieyt. Oh, woops! I just fell asleep on my laptop. Elijah's cough/cold symptoms started up in full force again in the past couple days, so we're all a little drained. This cough! I want to hurt it so badly. Maybe I'll write it a letter instead:
Dear Loathsome Cough of our Precious Elijah,
I feel I must enlighten you regarding the fact that you continue to make Elijah feel crummy, and that you are making us a very sleep-deprived little family. Neither of these things are issues that we want to have in our lives, so I'm going to go ahead and ask you to leave immediately.
Since there is no medication we can give Elijah in order to get rid of you, we unfortunately have to let him endure your wrath as we grit our teeth and punch our heads. This is especially difficult during the night because there is this thing called SLEEP that we all need in order to function, and if we are repeatedly punching our heads, sleep does not come easily.
This morning, being sleep-deprived already (thanks to you), and knowing I had to go to work in a few short hours, I resorted to sleeping in the closet from 4:15 until 6:30 because that was the only place in the house where you, the dreadful Cough, could not be heard. It is quite rude for a(n unwanted) guest to force me into my own closet to unite with sleep, don't you think?
Elijah has been extremely patient with you. He has endured you with dignity for your very extended visit (don't you think August through April is a bit long to be a house guest?). Although he is too polite to admit it himself, you have caused his little body a lot of disturbance and stress. So, back off, would you? Give the kid a break.
In a nutshell, WE DON'T LIKE YOU. We wish for you to leave and never return. We don't care what happens to you once you leave. Please don't write.
Signing off through very blurred and bloodshot eyes (thanks to you),
Elijah's mama
p.s. You can take your cousin, Green Snot, along with you. Both of your suitcases are out on the curb, ready to go.
Tuesday, April 21, 2009
More zoo love
We stopped by our friends' house to feed their kitty while they were out of town last weekend, and Elijah fell in love with their drum set. I wish we had the space to put a little set in our house for him. I think he would adore it.
We went to the zoo again on Saturday. Elijah is totally in love with this place. I learned a lesson, though. Do not tell your zoo-loving 2-year-old that you are going to the zoo until 60 seconds before you plan to leave the house. At 7:00 Saturday morning, I said, "Elijah! Do you want to go to the zoo today?!" For the next two hours he was whimpering and saying, "BYE BYE!" and handing us his shoes.
We got there right when it opened, so for once, we were able to get up close to the bear exhibit. It's usually just a sweaty mass of bodies in that area, so it was pretty cool being able to see them up close.
Awwww, I want to give him a hug!
We continue to hear more sounds and see more signs from our little man. It is very exciting to see all of this unfolding. Any time he does a sign or says a word, Dan and I squeal with delight and clap and yell, "YYAYyaaaayyyyy ELIJAH!! GOOD JOB! GOOD BOY! YAAAYYYY!" We get a little overly excited, yes, but we are so very happy for progress.
Elijah's AFOs should be in this week. It will be good to get those on his little feet. Tomorrow we have his first neurology appointment, so please pray that goes well. Thanks for checking in on our monkey!
More yum (healthy!) recipes
Garlic Parmesan Orange Roughy
Ingredients
4 (4 ounce) fillets orange roughy
1/2 lemon
1/2 cup grated Parmesan cheese
1/4 cup prepared Dijon mustard mayonnaise blend (we used half jalapeno mustard, half miracle whip)
2 large cloves garlic, pressed
1/4 teaspoon salt
paprika
Directions
1. Preheat the oven's broiler and set the oven rack about 6 inches from the heat source.
2. Place the orange roughy filets on the broiler pan and squeeze the lemon over the top of the fish. Broil the filets in the preheated oven for about 6 to 8 minutes.
3. Combine parmesan, mustard-mayo mixture, garlic, and salt in a small bowl. Remove the fish from the oven and spread the cheese mixture on top of the filets. Sprinkle with paprika. Broil until the topping is lightly browned and the fish flakes easily with a fork, about 3 minutes.
Asparagus with Cranberries and Pine Nuts
Ingredients
1 bunch asparagus
1 tablespoon olive oil
1/3 cup pine nuts
1/3 cup dried cranberries
1 pinch salt
Directions
1. Break off or trim the woody ends from the asparagus and discard.
2. Fill a saucepan with water and steam asparagus spears until bright green in color, about 5 minutes. Remove from heat and drain.
3. Heat the olive oil in a skillet over medium heat. Stir in the pine nuts, cranberries, and salt. Cook and stir until the pine nuts start to look translucent, 5 to 6 minutes. Add the asparagus to the ingredients in the skillet and toss. Serve on a platter with the cranberries and nuts spooned over the top of the asparagus.
Ingredients
4 (4 ounce) fillets orange roughy
1/2 lemon
1/2 cup grated Parmesan cheese
1/4 cup prepared Dijon mustard mayonnaise blend (we used half jalapeno mustard, half miracle whip)
2 large cloves garlic, pressed
1/4 teaspoon salt
paprika
Directions
1. Preheat the oven's broiler and set the oven rack about 6 inches from the heat source.
2. Place the orange roughy filets on the broiler pan and squeeze the lemon over the top of the fish. Broil the filets in the preheated oven for about 6 to 8 minutes.
3. Combine parmesan, mustard-mayo mixture, garlic, and salt in a small bowl. Remove the fish from the oven and spread the cheese mixture on top of the filets. Sprinkle with paprika. Broil until the topping is lightly browned and the fish flakes easily with a fork, about 3 minutes.
Asparagus with Cranberries and Pine Nuts
Ingredients
1 bunch asparagus
1 tablespoon olive oil
1/3 cup pine nuts
1/3 cup dried cranberries
1 pinch salt
Directions
1. Break off or trim the woody ends from the asparagus and discard.
2. Fill a saucepan with water and steam asparagus spears until bright green in color, about 5 minutes. Remove from heat and drain.
3. Heat the olive oil in a skillet over medium heat. Stir in the pine nuts, cranberries, and salt. Cook and stir until the pine nuts start to look translucent, 5 to 6 minutes. Add the asparagus to the ingredients in the skillet and toss. Serve on a platter with the cranberries and nuts spooned over the top of the asparagus.
Friday, April 17, 2009
Explosion
I heard the forecasted temp of 74 degrees on the radio on my way into work this morning. 74 degrees! I honestly did not even understand the sounds that created the words "seventy four degrees." Seventyfourseventyfourseventyfour. It was like she was speaking a language that I had never heard before. Isn't it sad that "seventy four degrees" sounds so strange? So, yes, it is BEAUTIFUL today. It's one of those days where you think that this has to be what the weather in Heaven is like. Unfortunately I was sitting in a windowless meeting room for most of the day, but our evening has been fabulously awesome.
Already doing the sign for more, even before we reach the bottom of the slide. Can I just say that this kids LOVES being outside. The park and slides and swings send him into fits of excitement beyond explanation.
I wanted to write a quick post about Elijah's PT/ST session last night. He has four people who work with him each Thursday session. A physical therapist, a PT student, a speech therapist and an ST student. All four of these awesome ladies work extremely hard with Elijah every Thursday night. They have all seen hours and hours of tears, refusals to cooperate, lots of screaming and more giant tears. Well. Last night I saw all four of their mouths literally hanging open because of the developmental explosion that has transpired over the past week.
A week ago they were begging him to do the sign for more. Last night he did it about 50 times, and without being asked. He also said some words that I haven't even heard him say before. He pointed to a giraffe and said, "Affff." He used "up," "pop," "roof," "help," "ball" and "off" appropriately. He stood up nice and straight as he played while holding onto the side of a table. He even moved his hips back and forth a bit as he stood. Elijah has always resisted movement. Everything about how he moves is very rigid, so even a little intentional side-to-side hip movement is exciting stuff. This is also why it was exciting that he willingly bent his knees to get a toy from the ground. His feet weren't pointing to the sides as much (which means he is feeling more stable), and all around he just seems more comfortable with his body.
YAY ELIJAH!
Already doing the sign for more, even before we reach the bottom of the slide. Can I just say that this kids LOVES being outside. The park and slides and swings send him into fits of excitement beyond explanation.
I wanted to write a quick post about Elijah's PT/ST session last night. He has four people who work with him each Thursday session. A physical therapist, a PT student, a speech therapist and an ST student. All four of these awesome ladies work extremely hard with Elijah every Thursday night. They have all seen hours and hours of tears, refusals to cooperate, lots of screaming and more giant tears. Well. Last night I saw all four of their mouths literally hanging open because of the developmental explosion that has transpired over the past week.
A week ago they were begging him to do the sign for more. Last night he did it about 50 times, and without being asked. He also said some words that I haven't even heard him say before. He pointed to a giraffe and said, "Affff." He used "up," "pop," "roof," "help," "ball" and "off" appropriately. He stood up nice and straight as he played while holding onto the side of a table. He even moved his hips back and forth a bit as he stood. Elijah has always resisted movement. Everything about how he moves is very rigid, so even a little intentional side-to-side hip movement is exciting stuff. This is also why it was exciting that he willingly bent his knees to get a toy from the ground. His feet weren't pointing to the sides as much (which means he is feeling more stable), and all around he just seems more comfortable with his body.
YAY ELIJAH!
Thursday, April 16, 2009
Lunch break drama
I had an action-packed lunch break yesterday when I went out to pick up a few things for Elijah's big day. At my first stop I got some shiny helium heart balloons and some regular red balloons and some other fun things. One of the heart balloons popped instantly upon getting into my car. I decided not to go back in to get it replaced because I didn't have the time. This was the start of an interesting hour.
Next I went to the grocery store and picked out some cupcakes and some pretty red flowers. I went to pay for these two items in lane 5, but the man working behind the register was being scolded by his manager for scanning the wrong broccoli coupon. This turned into a huge debacle. The poor guy was flustered and embarrassed and apparently he had messed up on more than just the broccoli, so the manager tried to sort everything out.
Five minutes later, I ducked on over to lane 6. In this lane, a customer had grabbed the wrong bag of frozen shrimp for the coupon she wanted to use, so we waited patiently for someone to bring her the right sized bag. Five minutes later, I moved over to lane 11. Eleven is my number, I knew it had to work. And it did.
I was on my way back to work when I looked down to see my empty gas light shining brightly up at me. Oops, it had been shining brightly the night before that, too. So I did a u-turn and went back toward the gas station. As I was waiting to turn left off a very busy road and into the gas station, I started getting impatient with the lack of gaps in the traffic. Finally I saw one, but the gap was small so I knew I was going to have to turn quickly. I had been so focused on the traffic that I didn't realize I had drifted too far foward, so when I turned I was staring straight at a giant curb. I turned sharply to the left like a crazy woman and made it back to the entrance just as the cars whizzed by me.
Heart pounding, I turned into the gas station to find that everyone in the city of Eden Prairie was getting gas at that very moment. Aha, a spot opened up, so I pulled in. Oh, diesel only. I backed out, drove to the gas station across the street and starting pumping my gas. I thought it would be a great time to clean some trash out of my car (since I never do that), so I opened the back door and out flew the heart balloons! UGghghhh! I had had it with all the crap, so the adrenaline kicked in and I made a superhuman leap into the air and caught the ribbons that were attached to the balloons. I stuffed them back into the car, decided I didn't care about the trash in my car, and finished with the gas. And of course, to top things off, I dribbled a little bit of it on my pants. I got in the car and started driving back to work before I got myself killed. A minute later.. Oh, I forgot to grab the receipt!
After all of that, I was perfectly happy to be sitting safely at my desk for the remainder of the afternoon.
Next I went to the grocery store and picked out some cupcakes and some pretty red flowers. I went to pay for these two items in lane 5, but the man working behind the register was being scolded by his manager for scanning the wrong broccoli coupon. This turned into a huge debacle. The poor guy was flustered and embarrassed and apparently he had messed up on more than just the broccoli, so the manager tried to sort everything out.
Five minutes later, I ducked on over to lane 6. In this lane, a customer had grabbed the wrong bag of frozen shrimp for the coupon she wanted to use, so we waited patiently for someone to bring her the right sized bag. Five minutes later, I moved over to lane 11. Eleven is my number, I knew it had to work. And it did.
I was on my way back to work when I looked down to see my empty gas light shining brightly up at me. Oops, it had been shining brightly the night before that, too. So I did a u-turn and went back toward the gas station. As I was waiting to turn left off a very busy road and into the gas station, I started getting impatient with the lack of gaps in the traffic. Finally I saw one, but the gap was small so I knew I was going to have to turn quickly. I had been so focused on the traffic that I didn't realize I had drifted too far foward, so when I turned I was staring straight at a giant curb. I turned sharply to the left like a crazy woman and made it back to the entrance just as the cars whizzed by me.
Heart pounding, I turned into the gas station to find that everyone in the city of Eden Prairie was getting gas at that very moment. Aha, a spot opened up, so I pulled in. Oh, diesel only. I backed out, drove to the gas station across the street and starting pumping my gas. I thought it would be a great time to clean some trash out of my car (since I never do that), so I opened the back door and out flew the heart balloons! UGghghhh! I had had it with all the crap, so the adrenaline kicked in and I made a superhuman leap into the air and caught the ribbons that were attached to the balloons. I stuffed them back into the car, decided I didn't care about the trash in my car, and finished with the gas. And of course, to top things off, I dribbled a little bit of it on my pants. I got in the car and started driving back to work before I got myself killed. A minute later.. Oh, I forgot to grab the receipt!
After all of that, I was perfectly happy to be sitting safely at my desk for the remainder of the afternoon.
Wednesday, April 15, 2009
Elijah's special heart day
Beautiful boy (pointing at the grass that he doesn't like).
Since this is Elijah's big anniversary day, we decided to make it a special day for him. I got a bunch of red and heart-shaped balloons and we had a fun balloon fight tonight. Then I scraped the white frosting off the cupcakes I got from the bakery (I don't have time to make cupcakes!) and put some red frosting in place of it. We had fun getting messy with the cupcakes after dinner. Elijah wasn't too sure about putting it into his mouth, but he took a few licks and did a good job of smearing it everywhere. I got a few other fun red things for him to enjoy tonight, to go along with the heart theme. We had a really fun evening. The weather is awesomely perfect outside today, so we went for a walk tonight and Elijah walked with his walker on the sidewalk for the first time! Big boy! He has had sooo much energy in the past couple days. It is wonderful. The fact that he has energy to expend is such a great sign and it makes me giddy to see it.
Red cupcakes and pretty red flowers.
One year ago, Elijah's body was in great distress. He was adjusting to his new anatomy post-surgery and Dan and I were scared and exhausted. Thinking back makes me so very very grateful for where we are at right now. It is amazing what a year (and a surgery) can do. We thank God for everything we have been given and all of the progress our little boy has made in the past year. Happy heart anniversary, Elijah! We love you sooo much.
Going crazy with the balloons.
Here, you try, Mama.
Hmmmmmmmm.
What is this on my lips.
Look at him go! Sooo proud!
Throwing his new ball.
Silly-face man pointing at the grass. He was not a fan of the grass touching his skin, as I suspected would be the case.
One year ago..
I remember waiting for the anesthesia team to come take him. I remember thinking how sick and purple he looked as we took turns cuddling with him. I remember telling him I loved him as the doctors carried him into the OR. I remember turning to walk back down the hall through blurry eyes. I remember the waiting. I remember being surprised about the peace I felt for most of that time. I remember getting a weird feeling in my tummy when there was an especially long time between updates. I remember literally wanting to hug his cardiologist when he said the words, "He did better than I ever could have expected." I remember walking into the PICU. I remember pushing the familiar button on the wall to open the door. I remember turning around to give Dan a HERE WE GO face. I remember taking a deep breath before I walked into the room. I remember my first glance of him, his nose bloodied and tubes and wires everywhere. I remember looking at the monitor and seeing a 98% saturation reading and starting to cry. I remember his nurse updating us as she sorted through the chaos of wires. I remember how helpless and panicked his high temperature and high heart rate made me feel. I remember him being bathed in ice water in an attempt to correct it all. I remember how relieved I felt when things stabilized. I remember holding his hand and whispering into his ear, telling him how strong he was. I remember feeling more drained than I had ever felt in my life. I remember lying in a sleep room, only a few feet from him, but feeling like he was a million miles away. I remember being terrified that somebody would knock on our door telling us something bad had happened. I remember praying to God that he get through this.
Tuesday, April 14, 2009
Shrieking and appointment updates
Just when Elijah's cough was starting to get a little bit better.. He woke up this morning with some lovely new congestion. We may as well sit back and enjoy the coughing, because it appears that it is never going to leave.
For the past few weeks, Elijah has started making this horribly loud and annoying noise any time he wants attention. It is not a good noise. It's the noise you hear in the grocery story and then think, "What kind of parents does THAT child have?" We have tried a few different approaches to get him to stop doing it and nothing has worked. Yesterday as we were driving in between doctor appointments (more on those below), and as the shrieking was getting totally out of control, I decided that we needed to take extreme measures. Dan and I chatted and decided that we were going to start Screaming Boot Camp. When at home, a scream equals a timeout (which he detests), period. No exceptions. When in public, a scream equals zero attention from Mommy and Daddy (which he detests). In addition to this, we will reward the good behavior and the good sounds, and do all of this CONSISTENTLY. We tried it when we got home, and it helped. A lot! I noticed at least six times last night where he stopped himself before letting out a shriek. I really hope this works. These noises are enough to drive us mad!
Ok, onto the important stuff.. Our first stop yesterday was cardiology. The emotional trauma Elijah endured was worse than I have ever seen. He was a complete mess when the nurse weighed, measured and xrayed him. He did great for the echo, thanks to Veggie Tales and since I was able to have him sit on my lap through the procedure. And he did great with Dr. G, as usual. Toward the end of the appointment, he even crawled over to him, sat at the foot of his chair and just stared longingly up at him.
Elijah's heart function and valve function look perfect. The only concern is that it is very hard to see what is going on with his pulmonary arteries through the echo. This may or may not indicate a problem. There is no way to know right now, but it is a good sign that he isn't showing any symptoms. If blood flow through his arteries is stressed, he will start to get easily fatigued, so this is a symptom to keep our eyes open for. Unless this starts happening soon, we don't have to go back for SIX MONTHS. That is the longest reprieve we've had yet! So, right around October, Elijah will have his sixth heart cath to get a closer look at those arteries and to see how they are functioning. From there we will have a better idea about when surgery #3 will happen. We really couldn't have asked for a better cardiology report yesterday.
Since cardiology took so long, we missed our pulmonology appointment, but we made it to urology. Dr. R was literally in the room for about 60 seconds. "Everything looks great, come back in a year." If everything still looks great at that time we will never need to go back.
We need to reschedule pulmonology and next Wednesday is neurology. Just a couple more and then we will hopefully have a nice break, just in time for summer.
Thank you for checking in on our shrieking munchkin!
For the past few weeks, Elijah has started making this horribly loud and annoying noise any time he wants attention. It is not a good noise. It's the noise you hear in the grocery story and then think, "What kind of parents does THAT child have?" We have tried a few different approaches to get him to stop doing it and nothing has worked. Yesterday as we were driving in between doctor appointments (more on those below), and as the shrieking was getting totally out of control, I decided that we needed to take extreme measures. Dan and I chatted and decided that we were going to start Screaming Boot Camp. When at home, a scream equals a timeout (which he detests), period. No exceptions. When in public, a scream equals zero attention from Mommy and Daddy (which he detests). In addition to this, we will reward the good behavior and the good sounds, and do all of this CONSISTENTLY. We tried it when we got home, and it helped. A lot! I noticed at least six times last night where he stopped himself before letting out a shriek. I really hope this works. These noises are enough to drive us mad!
Ok, onto the important stuff.. Our first stop yesterday was cardiology. The emotional trauma Elijah endured was worse than I have ever seen. He was a complete mess when the nurse weighed, measured and xrayed him. He did great for the echo, thanks to Veggie Tales and since I was able to have him sit on my lap through the procedure. And he did great with Dr. G, as usual. Toward the end of the appointment, he even crawled over to him, sat at the foot of his chair and just stared longingly up at him.
Elijah's heart function and valve function look perfect. The only concern is that it is very hard to see what is going on with his pulmonary arteries through the echo. This may or may not indicate a problem. There is no way to know right now, but it is a good sign that he isn't showing any symptoms. If blood flow through his arteries is stressed, he will start to get easily fatigued, so this is a symptom to keep our eyes open for. Unless this starts happening soon, we don't have to go back for SIX MONTHS. That is the longest reprieve we've had yet! So, right around October, Elijah will have his sixth heart cath to get a closer look at those arteries and to see how they are functioning. From there we will have a better idea about when surgery #3 will happen. We really couldn't have asked for a better cardiology report yesterday.
Since cardiology took so long, we missed our pulmonology appointment, but we made it to urology. Dr. R was literally in the room for about 60 seconds. "Everything looks great, come back in a year." If everything still looks great at that time we will never need to go back.
We need to reschedule pulmonology and next Wednesday is neurology. Just a couple more and then we will hopefully have a nice break, just in time for summer.
Thank you for checking in on our shrieking munchkin!
Saturday, April 11, 2009
Ahhhhh weather
Reading a book outside. Ohhh, it is beautiful today!
It has been the most beautiful, fun day. I cannot describe how wonderful it feels not to have my skin turn into ice crystals when I walk outside. AAAAAAaaaahhhhhh! We woke up and decided to go to the zoo this morning. They have a special display right now of baby farm animals. The little sheep and goats and pigs were sooo cute. Elijah seemed interested in the animals for the first time and we all really enjoyed ourselves. We stopped and had a yummy lunch on our way home and then Elijah took a THREE-hour nap! Whoa! Sunshine and stimulation equals good napping.
Weird creepy fish that we liked.
After his nap we went for a walk and went to the park. He loved the swing, as usual, but his new love is the slide. We slid down it a handful of times and he kept wanting more, giggling through it all. He just loves being outside. Loves it. I think we live in the wrong state.
Elijah even fed some goats!
Apparently all we need to do to get him to talk and sign is take him to the zoo. Right away when we walked in, he said, "Duh" for "duck" and "Kuh Kuh" for "cluck cluck." Then he said, "Up" whenever he wanted up. He has also been saying "Hup" for help today when he needs us to help him with something, which is AWESOME. He was also doing the sign for "bird" at the zoo. And, get this! He is finally doing the sign for "more," consistently, and of his own desire. Finally he decides he can show us this sign after holding out for so long.
Standing so proper
Oh and, the Twilight party last night was very fun. I just love my girl time. Let's do it again next week!
Tomorrow is Easter (happy Easter!) and we plan to spend the day with Dan's family. I am going to get Elijah ready for bed now and sit in the bath with Harry Potter, after stuffing my face with a few more jelly beans. Have a great weekend! Thanks for checking in.
He sat out in the front yard for quite a while, reading and playing with toys and occasionally (tentatively) feeling the grass.
Oh man, that is the sweetest face.
Couldn't you just eat him up?
Um, BIG BOY?! This is the first time EVER he has allowed the nebulizer mask on his face. YAAAYyyy for Elijah! He didn't complain once, through the entire 15-minute treatment. This is a minor miracle.
Friday, April 10, 2009
Molds made
The orthotist took molds of Elijah's feet and legs this week. It looks like the AFOs he will be getting will not go all the way up his calf. They will stop just above the ankle. They should be ready next week already! Dan picked out the design to go on them. He picked the 101 Dalmations design. ??? He said it tugged at his heart strings. While I'm sure they will be adorable, 101 Dalmations doesn't exactly scream ELIJAH to me, but whatever you think, Hubby! :)
I have girl time planned for this evening, yay! I'm kicking Dan out of the house so we can watch Twilight and pretend like we are 15-year-old girls. I even made an all vegetarian spread (since the Cullens are vegetarian vampires), with blood-red punch to wash it all down. I need help. Does anyone know of any Twilight rehabilitation services? (Paula, I can hear your voice in my head right now saying, "Ohh Megan.")
It is supposed to be warm this weekend, so I'm giddy in anticipation! Have a great Easter weekend, everyone!
p.s. Coughing still driving us all loopy.
I have girl time planned for this evening, yay! I'm kicking Dan out of the house so we can watch Twilight and pretend like we are 15-year-old girls. I even made an all vegetarian spread (since the Cullens are vegetarian vampires), with blood-red punch to wash it all down. I need help. Does anyone know of any Twilight rehabilitation services? (Paula, I can hear your voice in my head right now saying, "Ohh Megan.")
It is supposed to be warm this weekend, so I'm giddy in anticipation! Have a great Easter weekend, everyone!
p.s. Coughing still driving us all loopy.
Thursday, April 9, 2009
Expression
Last night Elijah was evaluated by a speech therapist from our city's birth to three program (where he already receives PT/OT from). We figured it wouldn't hurt to have him in speech therapy twice a week, at two different places. After the evaluation, she told Dan and me that she has never seen a child with such a wide gap between comprehension and expression. In other words, she has never seen a child who can talk or sign as little as Elijah can, yet who understands so much. For the comprehension portion of the test, she showed Elijah pictures and asked him to point out different objects and verbs. He did extremely well (he pointed out jungle..??). Some of the things he was answering (pointing to) correctly were things that 4- and 5-year-olds are typically tested on. Whoa! She said, "He's ready for kindergarten!" :)
So, Elijah has the true definition of Expressive Language Disorder. He was only able to say three of the words she asked him to say last night, so I'm positive that he will be approved for therapy. This is good. The more help we can get him, the better.
Next update will be about orthotics molds! Exciting stuff here on Elijah's blog.
So, Elijah has the true definition of Expressive Language Disorder. He was only able to say three of the words she asked him to say last night, so I'm positive that he will be approved for therapy. This is good. The more help we can get him, the better.
Next update will be about orthotics molds! Exciting stuff here on Elijah's blog.
Wednesday, April 8, 2009
You are no longer welcome! Leave, please!
If Elijah's cough could somehow expose itself in a tangible form, here is what I would do to it. I would drop kick it to the moon, after I had stabbed it repeatedly with a fork and pulled off all its toenails and fingernails. After 8+ months of this thing hanging around inside our little boy, we are so very tired of it.
Last night Elijah was such a sick, tired little man. It broke my heart. After dinner, he was so tired from all of the coughing, that he collapsed on my shoulder while I was giving him his neb. I put him to bed early, hoping he would go right to sleep, but instead he coughed for a solid hour or two before he really fell asleep. I did think it was funny when I heard him say, "UH OH!" in the middle of a long stretch of coughing. :)
So, assuming that The Cough reads this blog, I am saying to him right now.. We don't want you as a part of this family anymore. Please, go! There is nothing about you that we like. Let our son's body have some peace for once.
p.s. I totally, 100% agree with this. I will never understand it either, even though I have friends and family members who make this choice for their children. I will never get their decisions to not vaccinate their children.
Last night Elijah was such a sick, tired little man. It broke my heart. After dinner, he was so tired from all of the coughing, that he collapsed on my shoulder while I was giving him his neb. I put him to bed early, hoping he would go right to sleep, but instead he coughed for a solid hour or two before he really fell asleep. I did think it was funny when I heard him say, "UH OH!" in the middle of a long stretch of coughing. :)
So, assuming that The Cough reads this blog, I am saying to him right now.. We don't want you as a part of this family anymore. Please, go! There is nothing about you that we like. Let our son's body have some peace for once.
p.s. I totally, 100% agree with this. I will never understand it either, even though I have friends and family members who make this choice for their children. I will never get their decisions to not vaccinate their children.
Monday, April 6, 2009
Fan in the face
Cruisin' around in the walker.
Our munchkin just wasn't himself all weekend. He has the typical lingering croup symptoms, a cough and fatigue. We stayed pretty close to home all weekend, which is fine because it was still stupidly freezing cold outside.
Borrowing Mr. Potato Head's mustache.
I feel like such a bad mama. Yesterday when I was bringing Elijah upstairs to read a book before his nap, I set him down on the floor for a second. He had dropped his monkey and bending down and getting back up with him in my arms is impossible. I took one step away to pick Monkey up and the box fan that was leaning against the wall next to him fell over and hit him in the face. :( He cried, I felt awful, we hugged. Then I noticed he had a bloody nose. It wasn't too bad, but I feel absolutely horrible about it.
Elijah surprised me yesterday by doing the sign for juice, totally out of the blue. One of these days, he's just going to start speaking and signing in complete sentences.
I have a busy week at work, Dan has an almost full week, and Elijah has a busy week of daycare and PT/ST and getting molded for his orthotics. And hopefully one of these days the weather will decide to get warm again. Have a great week, and thanks for checking in on our little boy. xo
Saturday, April 4, 2009
Elijah v. Croup, round 5
I knew it was coming. I can always tell by the way Elijah is breathing that a croup episode is going to happen. I gave him a high dose pulmicort neb and a dose of oral steroids before bed. Sure enough, at 9:00 I heard stridor over the baby monitor. For the first time, he wasn't crying, but he was struggling to breathe. I got him out of bed and took him into the bathroom and turned on the shower. Except, he was really struggling. He just could not catch a breath. Dan had started giving him an epi neb, but it wasn't working fast enough. Elijah was starting to get scared, and that was making things worse. I thought about calling 911, but then remembered something that worked very well for him before. I turned off the neb, put a hat on him, wrapped him up in a blanket and Dan carried him outside. The cool air did the trick. Almost instantly, he was breathing normally. We stayed outside for a few minutes, came back in and finished the neb and then put him back to bed. Not a single issue the rest of the night! I wish we had known about the cool outside air trick six months ago. It probably could have saved us some ambulance rides.
So, this probably means we have another week or two of coughing ahead. I am so done with this cough. Summer cannot come soon enough.
I am hoping for no snow today, even though it's predicted to come. Warm weather, I miss you! Come to me!
So, this probably means we have another week or two of coughing ahead. I am so done with this cough. Summer cannot come soon enough.
I am hoping for no snow today, even though it's predicted to come. Warm weather, I miss you! Come to me!
Friday, April 3, 2009
Command V (or control V for windows users)
Last night was a really really good night. I'd like to copy and paste it onto every night for the entire month of April. Elijah did extremely well at PT/speech therapy. There were no tears for the first time in a very long time, he didn't protest anything, he used the walker willingly, he imitated sounds. I couldn't believe it! His therapists asked me where I put the real Elijah. We got home and the three of us had dinner together. There was no screaming and there were no timeouts. After dinner we played, watching a little Veggie Tales, read books, and Elijah went to bed like an angel (nothing new there). It was a good night.
At dinner I gave Elijah a bowl of sliced bananas after he gobbled down his spaghettios, veggies and oranges. I saw him moving his fingers around each other and then pointing at the bananas. He did it a few times before I realized what he was doing. He was doing the sign for BANANA! This is one of the more difficult signs we have taught him, and we haven't actually done the sign in ages, so again, the kid is messing with us big time.
Next Thursday Elijah will get molds taken of his legs and feet for his orthotics. I'm excited to get them made and on his little legs to see how it helps with his walking. He is making such great strides lately. I can practically taste having a child who can walk independently.
We don't have any plans set in stone for our weekend, which is a welcome change of pace for us. Have a great weekend and thanks for checking in on our monkey!
At dinner I gave Elijah a bowl of sliced bananas after he gobbled down his spaghettios, veggies and oranges. I saw him moving his fingers around each other and then pointing at the bananas. He did it a few times before I realized what he was doing. He was doing the sign for BANANA! This is one of the more difficult signs we have taught him, and we haven't actually done the sign in ages, so again, the kid is messing with us big time.
Next Thursday Elijah will get molds taken of his legs and feet for his orthotics. I'm excited to get them made and on his little legs to see how it helps with his walking. He is making such great strides lately. I can practically taste having a child who can walk independently.
We don't have any plans set in stone for our weekend, which is a welcome change of pace for us. Have a great weekend and thanks for checking in on our monkey!
Wednesday, April 1, 2009
New toy!
This is how Elijah arranged Mr. Potato Head tonight. Hmmm.
Look at the awesome new toy that our new friend Cecilia sent to Elijah! He totally loves it to pieces. Thanks so much, Cecilia and Paul!
He can sit on it, or walk behind it. It cruises along a little faster than his walker, but he didn't have a problem keeping up. It was so cute to see his little legs moving so fast.
He sobbed the entire time Dan was putting it together. He couldn't stand it! He wanted to play with it NOW NOW NOW.
It actually got a little ridiculous and dramatic. Goodness, Elijah.
I love this picture. Look at that sweet little face peeking out of his fort. Sooo cute.
Subscribe to:
Posts (Atom)