Guess who has discovered his fingers? Mmmm....yummy. Not too bad of a picture taken by my phone. :-)
Thursday, September 29, 2011
Yummy
Guess who has discovered his fingers? Mmmm....yummy. Not too bad of a picture taken by my phone. :-)
Where Does the Time Go?
There are about a million things that I really should be doing, but as for right now, the laundry is in the dryer, the dishes are done, and although Zuri's toys are scattered about the living room, Zuri herself is "down" for a nap. By "down" I mean she is playing in her room. Kai is also sleeping, so I am taking a moment to relax. Lately, it seems that as soon as I put Zuri down for her nap, Kai decides that is the time to wake up, and then he is up pretty much the rest of the day, so I don't have the opportunity for a break.
Where does the day go? I am constantly amazed at how fast the days go by. I remember working and the time always seemed to just drag on. Since I have been at home, however, the time goes so fast. Is it already almost two in the afternoon? How is it already Thursday? Zuri and Kai certainly keep me busy. When I was home with just Zuri, it seemed as though I had plenty of downtime. With two (and with the extra care Kai requires), I have very little. Luckily, I have a caring and considerate husband, who although doesn't always understand my need for reading/blogging/scrapbooking/whatever, is very supportive and gives me the time that I need. I am trying to fit going back to the gym in there--I have figured out the best time, it is just getting to it. Once I start in the routine it will stick--I just have to start.
My time is occupied by these two cuties.
A tiny smile caught on camera.
Where does the day go? I am constantly amazed at how fast the days go by. I remember working and the time always seemed to just drag on. Since I have been at home, however, the time goes so fast. Is it already almost two in the afternoon? How is it already Thursday? Zuri and Kai certainly keep me busy. When I was home with just Zuri, it seemed as though I had plenty of downtime. With two (and with the extra care Kai requires), I have very little. Luckily, I have a caring and considerate husband, who although doesn't always understand my need for reading/blogging/scrapbooking/whatever, is very supportive and gives me the time that I need. I am trying to fit going back to the gym in there--I have figured out the best time, it is just getting to it. Once I start in the routine it will stick--I just have to start.
My time is occupied by these two cuties.
A tiny smile caught on camera.
A Day with Daddy
Since we don't have the opportunity to get out much anymore, we don't want Zuri to miss out, so we plan days where one of us will spend the day with her--out of the house. A couple weeks ago, J spent the day at the park with her. They had fun on the playground and feeding the ducks.
I had meant to post about the day previously, but then we ended up taking Kai into the PICU and I completely forgot about it. J mentioned to me this morning that he never saw the post, so I am taking the hint and posting. ;-)
After she was done feeding the ducks, she had to go chase them--it is one of her favorite things to do. "Get the ducks! Catch them! Catch them!"
I had meant to post about the day previously, but then we ended up taking Kai into the PICU and I completely forgot about it. J mentioned to me this morning that he never saw the post, so I am taking the hint and posting. ;-)
After she was done feeding the ducks, she had to go chase them--it is one of her favorite things to do. "Get the ducks! Catch them! Catch them!"
Wednesday, September 28, 2011
Monday, September 26, 2011
What a Day
Wow. What a crazy day and a half it has been. I cannot wait until eleven o'clock so I can sleep! It started yesterday with an attempt at a marathon pumping event. You see, since moving into our new place and that coupled with starting a new job, I wasn't as diligent as I should have been with my pumping, and therefore I lost my milk. To give you an idea of how much I produced, for the last month and a half, he has been using what I had stored. We had to buy a deep freezer to keep it all! Well, we are now down at the last of it, and previous attempts to restore my milk supply have failed, so I decided to try something Maria told me about. Pumping every 30 minutes for three hours. Yesterday was day one of the attempt. I got two hours into it and then got distracted by kids. It was downhill from there. I have been so busy that I haven't had a chance to do it today, but it will have to be later in the evening.
So, onto the next bit o'crazy. By eleven last night, J and I were worn out and tired. Kai had been fussy and awake all day, and Zuri was whiny. We were eagerly waiting for the nurse to arrive. Eleven-fifteen went by, then eleven-twenty. No nurse. By eleven-thirty we were getting annoyed and a little anxious. Where was the nurse? So, we called the office and they said that nurse so-and-so (name withheld to protect identity) was supposed to be there. I told them that nurse so-and-so had told us a few days before that she had been reassigned for that night to a different family because she was orienting a new nurse (or family--can't remember which). They tried calling the nurse who they said was supposed to come that night and received no reply. Then they tried the call list, but because by that time it was almost midnight, no one was available. So, we went without a nurse last night. It was awful. J and I took shifts. I stayed up until four-thirty this morning so that he could get the most sleep and be more (or less) rested for work. By the time four came, however, I had hit my second wind and was wide awake when it was J's turn. He insisted that I need to get some sleep, so I went in, but sleep eluded me until after five this morning. J was in at seven-thirty, letting me know that he needed to go to work. At most I had two and a half hours of sleep, and I am feeling it now. Kai decided to be awake and fussy until three this morning, so at least my shift kept me occupied.
From seven-thirty this morning, I started getting ready right away for Kai's ENT appointment at Primary Children's (trach check-up) at eleven-thirty. Good thing I did, because although we made it fifteen minutes early (whoohoo!) I was afraid we were going to be late. Kai had one of his "episodes" before we left where he was so hysterical that he didn't want to breathe. Oh, the stress! To get him calm, I had to take him out of his car seat and pat his back for a bit. Once calm, the ride to the hospital was smooth and uneventful (hallelujah). The appointment itself was also quick and uneventful. Good news--Kai is now up to 10 lbs 5 oz (4.67 kg)! He is getting bigger!
If I don't get my milk back, we are hoping the transition to formula won't be too bad--thus far he has not been able to tolerate formula very well. In fact, we have been fortifying my milk with a special formula because he can't handle the regular stuff.
Well, we had another surprisingly, mostly uneventful ride home, and then someone has parked in my parking stall. Add that to an already short fuse and I was upset. It still takes at least three trips when it is just me and the kids to get everything in and out of the car. Our stall is located at the base of the stairs to our condo so it is a quick trip there and back. The unassigned parking is around the corner. So, I parked the car right in front of the other car so I could at least unload, and once the kids and equipment were all inside I quickly parked in an unassigned spot and ran inside. Whew, all was well.
Right now, both Zuri and Kai are down for a nap (which rarely happens, so I am entirely grateful), and we are just awaiting the arrival of the occupational therapist in an hour. What a day.
Sleep sounds so nice...I cannot wait to fall in bed tonight.
So, onto the next bit o'crazy. By eleven last night, J and I were worn out and tired. Kai had been fussy and awake all day, and Zuri was whiny. We were eagerly waiting for the nurse to arrive. Eleven-fifteen went by, then eleven-twenty. No nurse. By eleven-thirty we were getting annoyed and a little anxious. Where was the nurse? So, we called the office and they said that nurse so-and-so (name withheld to protect identity) was supposed to be there. I told them that nurse so-and-so had told us a few days before that she had been reassigned for that night to a different family because she was orienting a new nurse (or family--can't remember which). They tried calling the nurse who they said was supposed to come that night and received no reply. Then they tried the call list, but because by that time it was almost midnight, no one was available. So, we went without a nurse last night. It was awful. J and I took shifts. I stayed up until four-thirty this morning so that he could get the most sleep and be more (or less) rested for work. By the time four came, however, I had hit my second wind and was wide awake when it was J's turn. He insisted that I need to get some sleep, so I went in, but sleep eluded me until after five this morning. J was in at seven-thirty, letting me know that he needed to go to work. At most I had two and a half hours of sleep, and I am feeling it now. Kai decided to be awake and fussy until three this morning, so at least my shift kept me occupied.
From seven-thirty this morning, I started getting ready right away for Kai's ENT appointment at Primary Children's (trach check-up) at eleven-thirty. Good thing I did, because although we made it fifteen minutes early (whoohoo!) I was afraid we were going to be late. Kai had one of his "episodes" before we left where he was so hysterical that he didn't want to breathe. Oh, the stress! To get him calm, I had to take him out of his car seat and pat his back for a bit. Once calm, the ride to the hospital was smooth and uneventful (hallelujah). The appointment itself was also quick and uneventful. Good news--Kai is now up to 10 lbs 5 oz (4.67 kg)! He is getting bigger!
If I don't get my milk back, we are hoping the transition to formula won't be too bad--thus far he has not been able to tolerate formula very well. In fact, we have been fortifying my milk with a special formula because he can't handle the regular stuff.
Well, we had another surprisingly, mostly uneventful ride home, and then someone has parked in my parking stall. Add that to an already short fuse and I was upset. It still takes at least three trips when it is just me and the kids to get everything in and out of the car. Our stall is located at the base of the stairs to our condo so it is a quick trip there and back. The unassigned parking is around the corner. So, I parked the car right in front of the other car so I could at least unload, and once the kids and equipment were all inside I quickly parked in an unassigned spot and ran inside. Whew, all was well.
Right now, both Zuri and Kai are down for a nap (which rarely happens, so I am entirely grateful), and we are just awaiting the arrival of the occupational therapist in an hour. What a day.
Sleep sounds so nice...I cannot wait to fall in bed tonight.
Knee Deep
This is my new favorite song:
Gonna put the the world away for a minute
Pretend I don't live in it
Sunshine gonna wash my blues away
Had sweet love but I lost it
She got too close so I fought her
Now I'm lost in the world trying to find me a better way
Wishing I was knee deep in the water somewhere
Got the blue sky breeze and it don't seem fair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
Wrote a note said be back in a minute
Bought a boat and I sailed off in it
Don't think anybody gonna miss me anyway
Mind on a permanent vacation
The ocean is my only medication
Wishing my condition ain't ever gonna go away
Cause now I'm knee deep in the water somewhere
Got the blue sky breeze blowing wind through my hair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
This champagne shore washing over me
It's a sweet sweet life living by the salty sea
One day you could be as lost as me
Change you're geography
Maybe you might be
Knee deep in the water somewhere
Got the blue sky breeze blowing wind through my hair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
Come on in the water it's nice
Find yourself a little slice
Grab a backpack of lies
You never know until you try
When you lose yourself
You find the key to paradise
Pretend I don't live in it
Sunshine gonna wash my blues away
Had sweet love but I lost it
She got too close so I fought her
Now I'm lost in the world trying to find me a better way
Wishing I was knee deep in the water somewhere
Got the blue sky breeze and it don't seem fair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
Wrote a note said be back in a minute
Bought a boat and I sailed off in it
Don't think anybody gonna miss me anyway
Mind on a permanent vacation
The ocean is my only medication
Wishing my condition ain't ever gonna go away
Cause now I'm knee deep in the water somewhere
Got the blue sky breeze blowing wind through my hair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
This champagne shore washing over me
It's a sweet sweet life living by the salty sea
One day you could be as lost as me
Change you're geography
Maybe you might be
Knee deep in the water somewhere
Got the blue sky breeze blowing wind through my hair
Only worry in the world is the tide gonna reach my chair
Sunrise there's a fire in the sky
Never been so happy
Never felt so high
And I think I might have found me my own kind of paradise
Come on in the water it's nice
Find yourself a little slice
Grab a backpack of lies
You never know until you try
When you lose yourself
You find the key to paradise
-Zac Brown Band, Knee Deep (featuring Jimmy Buffet)
(Thanks, Em, for the lyrics)
Cousins
This is my last post today! I just thought this picture was so cute--even if Zuri wasn't looking at the camera (we couldn't get both of them to look and smile at the same time). J's mom and two of his sisters came up and spent some time with us Friday evening. It was nice to visit and Zuri had fun playing with her cousins.
Sunday, September 25, 2011
Getting Bigger
This little guy is starting to roll. He can make it from his side to his back/tummy, and from his back to his side. He still isn't consistent, and with all the tubes and wires in the way, it makes it harder for him (not to mention his flat head). Still, he is getting stronger and rolling much more frequently. He loves having his face buried, and I think that if he could, he would be a tummy sleeper. Not sure how it will all work out when he starts crawling, since he still requires the oygen...it will seriously limit his mobility. But, we are not at that bridge yet; just something I have been thinking about as he starts to get bigger and stronger.
He is also able to hold onto things much better. He was waving his toy all around--it is hard to see in the picture but he was having fun just waving his arms around. He didn't quite seem to know what to do with the toy, but it is a start! It is fun to see him starting to figure things out!
Creativity
What does Zuri do while I am busy with Kai? She creates slides! She is pretty imaginative, and one of her favorite creations is the tunnel slide. She takes her Tinkerbell tunnel and one of the couch cushions and makes a slide. She slides from the couch onto the cushion to the floor. She came up with that one all on her own. She continues to amaze me daily.
Game Time
This is how J still manages to get in some good ol' video game time. I know, serious face, he is concentrating, but Kai and J sure do look alike in that shot, don't they? We call that Kai's grumpy old man face. Haha. :-)
Thursday, September 22, 2011
A Sneak Peak
As mentioned before, I have an amazing friend from back home in Lake Tahoe, who when she heard about Jeremy wanted to do something special for us. She is a photographer (see her work here: http://jaimiedaniels.com/, she also did a photoshoot of Zuri and me a couple years ago) and through her connections, set me up with a photographer in Salt Lake, who came to our place and shot some beautiful pictures of Kai and our family. She has posted a touching blurb and sneak peak on her blog. When she gets the rest of the pictures done I will also post the link, so that if anyone would like to order prints, they may do so.
To see the sneak peak, go here: http://www.chelseastirlenphotography.com/blog/?p=1036.
PS My favorite is the last one of just Kai. Isn't she talented? I am so excited to see the rest!
To see the sneak peak, go here: http://www.chelseastirlenphotography.com/blog/?p=1036.
PS My favorite is the last one of just Kai. Isn't she talented? I am so excited to see the rest!
Monday, September 19, 2011
Turning 30
I turned 30 on Saturday. Can I really be 30? I feel old. Although I know that 30 is still young(ish), for some reason the approach of this birthday has been hard for me. No longer in my 20's. An "official" adult. I remember when I turned 20 that I still felt as though I should still be a teenager and still felt so young. These last six months have aged me, so although I would like to say I still "feel" young, that is no longer the case.
I had a wonderful birthday, however. I got up early because we had a photoshoot done here at the condo. I have an amazing friend back home (Tahoe) who set me up with a photographer out here who was willing to come to us to do some newborn portraits of Kai. She also took a few family shots as well. I can't wait to see them!
The photoshoot took all morning and a good part of the afternoon. Then Alisia came over to watch the kids so we could go out to dinner with some friends. We went to Texas Roadhouse, which is oh-so-yummy. Their ribs are to die for--seriously. Fall off the bone type of ribs. Mmmmmm.... Dinner took a little longer than we thought, so we ended up missing the movie time we had originally set, so we came back home for a bit to wait for the next showing. Then we went to the movie and didn't get home until after the nurse had gotten here. It was a nice, full day. :-)
I even got a virtual cake from Kimie in Japan!
Thank you everyone for your birthday wishes--it was a great day!
Friday, September 16, 2011
Conversations with Zuri Part II
Z: "Gotta go potty!" she rushes in to the bathroom. "See! Peepee!"
Me: "You went peepee? Good job!"
Z: "You're welcome!"
---------------------------------
--We were watching a show on the History channel about the Earth and it was showing the ocean
Z: "Shark! Shark! Shark!"
Shin: "There's no shark"
Z: "I don't know where the shark is!" Slight pause. "In the water."
Me: "You went peepee? Good job!"
Z: "You're welcome!"
---------------------------------
--We were watching a show on the History channel about the Earth and it was showing the ocean
Z: "Shark! Shark! Shark!"
Shin: "There's no shark"
Z: "I don't know where the shark is!" Slight pause. "In the water."
Wednesday, September 14, 2011
4 Months
Four months--hooray! We took Kai to his four month check-up today. He weighs in at 9 lbs 6 oz! He is at the 1% on the growth chart for his weight, height, and head circumference. His pediatrician kept saying how good he is looking and is impressed with his motor development (he is right on track). He has almost tripled his weight in the last four months! Wow, has it really been four months? The time has gone by so fast--where did summer go? Did we even have a summer?
The check-up went really well. Kai was agitated through most of it, but he did better than on some visits. The car ride home went nice and smoothly, but the car ride there was rough. The freeway is being expanded and road construction seems never-ending. There is a section of I-15 where there is no shoulder, just the lane and the barrier (on the right and left). Well, during that section, Kai decides to lose his trach nose and oxygen and dip down into the 70's. To top it off, traffic was bad and we were only going about 40 mph and the next exit was two miles down the road. I was frantic. He was turning more and more blue and there was nothing that I could do. I was about to stop in the middle of traffic right then and there, but luckily the road widened a little further down, and I slipped through some construction cones to pull over. I had to pull over two other times during the short 15 minute drive to replace his oxygen. They really should make something that keeps the trach nose and oxygen on like they have with the mask. It would make life SO much less stressful while traveling (not to mention SAFER).
Just when I think I have the hang of toting everything around, the spare oxygen tank (the one Kai was using was low and I didn't want to run out of air) toppled over and started shooting out oxygen full pressure. My exact words were "are you kidding me!" I had had enough, and by the time I made it into the pediatrician's office, my nerves were completely shot and I was shaking.
I am just grateful for a sleeping baby on the car ride home. I think we were both exhausted at that point. It is amazing how smoothly things can go if Kai sleeps while in the car. Hopefully, as he grows, the car ride won't be as stressful for him, and things will go smoother more often.
The check-up went really well. Kai was agitated through most of it, but he did better than on some visits. The car ride home went nice and smoothly, but the car ride there was rough. The freeway is being expanded and road construction seems never-ending. There is a section of I-15 where there is no shoulder, just the lane and the barrier (on the right and left). Well, during that section, Kai decides to lose his trach nose and oxygen and dip down into the 70's. To top it off, traffic was bad and we were only going about 40 mph and the next exit was two miles down the road. I was frantic. He was turning more and more blue and there was nothing that I could do. I was about to stop in the middle of traffic right then and there, but luckily the road widened a little further down, and I slipped through some construction cones to pull over. I had to pull over two other times during the short 15 minute drive to replace his oxygen. They really should make something that keeps the trach nose and oxygen on like they have with the mask. It would make life SO much less stressful while traveling (not to mention SAFER).
Just when I think I have the hang of toting everything around, the spare oxygen tank (the one Kai was using was low and I didn't want to run out of air) toppled over and started shooting out oxygen full pressure. My exact words were "are you kidding me!" I had had enough, and by the time I made it into the pediatrician's office, my nerves were completely shot and I was shaking.
I am just grateful for a sleeping baby on the car ride home. I think we were both exhausted at that point. It is amazing how smoothly things can go if Kai sleeps while in the car. Hopefully, as he grows, the car ride won't be as stressful for him, and things will go smoother more often.
Conversations with Zuri
-"Mommy, I want some milk...milk, please."
-Handing Zuri a sippy cup of milk. She takes a drink and starts shaking it around.
-"Zuri, stop." She ignores me. "Zuri, stop shaking your milk." Still no response. "Do you want me to take it away from you?"
-Very innocently, "yeah," and hands me the cup of milk.
-Handing Zuri a sippy cup of milk. She takes a drink and starts shaking it around.
-"Zuri, stop." She ignores me. "Zuri, stop shaking your milk." Still no response. "Do you want me to take it away from you?"
-Very innocently, "yeah," and hands me the cup of milk.
Oh yes, we couldn't stop laughing.
Cleanliness
You know you are in trouble when your three year old suddenly becomes quiet. Zuri's new favorite thing to do is wash her hands. Not a bad thing, but she is certainly going through the soap! With Kai we have a ton of hand sanitizer, and after she washes her hands she has to put on hand sanitizer--and, she has to do it all herself. She is a funny kid. It is fun watching her grow into her own little person.
She is so cute around Kai. She loves to watch him and play with him (as much as she can). She loves when he holds her hand. She calls it "squishing." She watches over him and informs us if he is awake and wriggling or crying. About a week ago, she was in her room "taking a nap" and his monitor went off. Zuri had just been playing with her dolls and making up the cutest conversation (which I can't remember right now) but she heard the monitor in her room and called out "pause it! Mommy, pause it!" I laughed so hard.
Tuesday, September 13, 2011
The Nays Have It
So, it looks like the blog will remain public. Thank you for your votes and comments! I love feedback and it is fun to find out who is reading the blog. :-) I know I set the poll to run for a month, but I came across something else that has swayed my opinion on keeping the blog open.
A friend on facebook posted a link to this article the other day: http://www.salon.com/life/feature/2011/01/15/feminist_obsessed_with_mormon_blogs. Very interesting. I have been thinking about it ever since. On one hand, it is a compliment to "Mormon Mommy Blogs," and I am proud to be part of a trend that I didn't even know about. A celebration of motherhood. A way to reach out in the world. A way to connect with others.
What is it about our crazy, hectic lives that draws readers so? The blogs I follow, I follow for specific reasons. Most of my blog list are friends and it is fun to keep up with their lives and see how things are going. I also follow blogs which are give ideas--such as cute hair ideas for girls and recipes. Then there are the two blogs I follow simply because the author is an inspiration to me.
You see, our little family has been turned upside down in the last few months. We had doctors giving us the worst case scenario from the beginning. If your son survives birth....his brain may not send the signal to his body to breathe....marshall-smith syndrome...moderate to severe mental retardation...found a mass that could be a tumor...moderate to severe hearing loss...will be only able to say a handful of words at most...average life span is three years...respiratory illnesses....eventually have to have a ventilator... It is so easy to get mired down in the negativity and lose focus. Knowing that there are others out there who have/and are going through rough (if not rougher) times, and learning how they have coped helps me. I am not going to pretend it is easy. I am not going to sugar coat everything. I have my good days and my bad. I make many mistakes but I keep trying. Parenting with normal, healthy children is not easy, now compound it. We all have trials and days where it we wonder how we are going to make it through the day, and tomorrow seems just as bleak. But, we make it--with the help of the Lord, and friends and family, we make it. The rewards are infinitely more satisfying. Life takes on a new meaning when you have children.
So, if my blog can help others, even in a small way, then it is worth keeping public. Not even a week has passed and I already have nine votes for "no" on the poll. So, to you who follow our journey, I say thank you and the blog will remain public.
A friend on facebook posted a link to this article the other day: http://www.salon.com/life/feature/2011/01/15/feminist_obsessed_with_mormon_blogs. Very interesting. I have been thinking about it ever since. On one hand, it is a compliment to "Mormon Mommy Blogs," and I am proud to be part of a trend that I didn't even know about. A celebration of motherhood. A way to reach out in the world. A way to connect with others.
What is it about our crazy, hectic lives that draws readers so? The blogs I follow, I follow for specific reasons. Most of my blog list are friends and it is fun to keep up with their lives and see how things are going. I also follow blogs which are give ideas--such as cute hair ideas for girls and recipes. Then there are the two blogs I follow simply because the author is an inspiration to me.
You see, our little family has been turned upside down in the last few months. We had doctors giving us the worst case scenario from the beginning. If your son survives birth....his brain may not send the signal to his body to breathe....marshall-smith syndrome...moderate to severe mental retardation...found a mass that could be a tumor...moderate to severe hearing loss...will be only able to say a handful of words at most...average life span is three years...respiratory illnesses....eventually have to have a ventilator... It is so easy to get mired down in the negativity and lose focus. Knowing that there are others out there who have/and are going through rough (if not rougher) times, and learning how they have coped helps me. I am not going to pretend it is easy. I am not going to sugar coat everything. I have my good days and my bad. I make many mistakes but I keep trying. Parenting with normal, healthy children is not easy, now compound it. We all have trials and days where it we wonder how we are going to make it through the day, and tomorrow seems just as bleak. But, we make it--with the help of the Lord, and friends and family, we make it. The rewards are infinitely more satisfying. Life takes on a new meaning when you have children.
So, if my blog can help others, even in a small way, then it is worth keeping public. Not even a week has passed and I already have nine votes for "no" on the poll. So, to you who follow our journey, I say thank you and the blog will remain public.
Monday, September 12, 2011
Learning Sign
Thursday we began learning American Sign language so that we can begin communicating with Jeremy. It is an exciting process, even if we won't see the results for several months. We have been dealing with an early intervention program called Kids on the Move. They are help us with such things as Kai's occupational therapy and learning how to sign. It is a great program designed for kids before they reach school age.
We have a busy week ahead of us. We have an appointment everyday this week, which is very stressful. I dread the days in which I have to take Kai to appointments. He does not handle getting out very well at all. Wish me luck this next week--I need it!
Our first stop this week is Audiology. It was a three-hour visit, in which they will did one last ABR in each ear before getting him fitted for hearing aids. The goal is to get him hearing most--if not all--speech sounds. He had his molds done for his hearing aids today, and we will go back October 4th for them! I am so excited to have him be able to hear us! I cannot wait!
Kai did really well in the car today--both to and from the appointment. It is the first time that I have not had to pull over and suction him/fix his oxygen and trach nose. Hopefully the rest of the week will go as smoothly!
We have a busy week ahead of us. We have an appointment everyday this week, which is very stressful. I dread the days in which I have to take Kai to appointments. He does not handle getting out very well at all. Wish me luck this next week--I need it!
Our first stop this week is Audiology. It was a three-hour visit, in which they will did one last ABR in each ear before getting him fitted for hearing aids. The goal is to get him hearing most--if not all--speech sounds. He had his molds done for his hearing aids today, and we will go back October 4th for them! I am so excited to have him be able to hear us! I cannot wait!
Kai did really well in the car today--both to and from the appointment. It is the first time that I have not had to pull over and suction him/fix his oxygen and trach nose. Hopefully the rest of the week will go as smoothly!
Wednesday, September 7, 2011
Inspiration
It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us...If we will put our trust in Him, if we pray to Him, if we live worthy of His blessings, He will hear our prayers.
--President Gordon B. Hinckley
We have that posted on our fridge, and it is a comfort in during the rough times. No matter how hard things may seem now, things will get better. I have faith in that, and faith in the Lord. I know that little Kai was placed with us for a reason, even if I can't understand why, or think that I am completely inept. I have learned much over the last few months. I have been faced with challenges that I never imagined. My eyes have been opened.
I have good days and bad days. Days where I feel so completely inadequate and spend the day in tears. I have days where I am stronger and know that I will get through this. I wouldn't be able to do this without J by my side. He is strong when I am weak. He has his times when he struggles as well--and luckily, those seem to be the days that I am strong. The hardest part of the whole situation is the fact that J and I don't have any time outside of the house together--we don't have the luxury of loading the kids into the car and go to a friend or a relative's house. We can't go to the grocery store together. We just can't get out.
I have a mantra that runs through my head on the tougher days. This too, shall pass. I don't know how, or when, but it won't always be like this. We will be able to go camping, hiking, for walks, to the store, to the movies, to visit friends and family. Other people have special needs children and they make it work. We will too. Somehow.
Labor Day weekend was rough for us. It is usually a time when we go camping or spend time with family. J took Zuri to the park, and Zuri and I went to a birthday party. We are an active family and being stuck at home has been hard for us. We have had to adapt and we keep an eternal perspective. This too shall pass. I look to the quote above from President Hinckley, and it gives me comfort.
Another source of inspiration is a lady named Stephanie Nielson. I am sure many of you have heard about her. I first read her story in a magazine while at a prenatal appointment. This was before we learned anything was wrong with Jeremy. She is from Utah and was in a plane accident with her husband and the pilot. The pilot died in the crash, and she and her husband survived. Stephanie was burned over 80% of her body and has had extensive skin grafts and reconstruction. The amazing thing is her attitude. Instead of letting this take away her life, she has embraced life more fully and has been quite the motivational speaker. She has even been able to become pregnant again, and has been featured at many women's conferences and on Oprah. She has been featured in many magazines and has even written articles. I follow her blog here: http://nieniedialogues.blogspot.com/.
One thing I love about her is that she is real. She writes about the bad days as well as the good. She has had a rough pregnancy and is not afraid to let you see her. She laughs, she cries, she makes fun of herself. She makes the best out of a rough situation. She truly is an inspiration, and seeing her situation makes ours seem a little better.
On a different note, this blog started out as a way to let family and friends keep up with our lives since we live so far away. It has become so much more than that now. I have considered on many occasions making the blog private, but I also don't want to take away from those who read this blog either. I know more than six people read this, but that is all I have in my followers section. I love having readers and I love comments. As this blog becomes more--details all that we go through with Kai, I wonder how "public" I should keep it. I already have it unlisted so you can only find it if you have the blog address itself. Is that enough? I am going to put a poll up and based on the results (and comments) I will decide which way to go.
So, dear reader, since this blog was originally made for you, it is up to you. Vote or leave a comment. If the blog becomes private, all I would need is your email address to send an invitation and you will be able to see the blog just as you do now. :-)
--President Gordon B. Hinckley
We have that posted on our fridge, and it is a comfort in during the rough times. No matter how hard things may seem now, things will get better. I have faith in that, and faith in the Lord. I know that little Kai was placed with us for a reason, even if I can't understand why, or think that I am completely inept. I have learned much over the last few months. I have been faced with challenges that I never imagined. My eyes have been opened.
I have good days and bad days. Days where I feel so completely inadequate and spend the day in tears. I have days where I am stronger and know that I will get through this. I wouldn't be able to do this without J by my side. He is strong when I am weak. He has his times when he struggles as well--and luckily, those seem to be the days that I am strong. The hardest part of the whole situation is the fact that J and I don't have any time outside of the house together--we don't have the luxury of loading the kids into the car and go to a friend or a relative's house. We can't go to the grocery store together. We just can't get out.
I have a mantra that runs through my head on the tougher days. This too, shall pass. I don't know how, or when, but it won't always be like this. We will be able to go camping, hiking, for walks, to the store, to the movies, to visit friends and family. Other people have special needs children and they make it work. We will too. Somehow.
Labor Day weekend was rough for us. It is usually a time when we go camping or spend time with family. J took Zuri to the park, and Zuri and I went to a birthday party. We are an active family and being stuck at home has been hard for us. We have had to adapt and we keep an eternal perspective. This too shall pass. I look to the quote above from President Hinckley, and it gives me comfort.
Another source of inspiration is a lady named Stephanie Nielson. I am sure many of you have heard about her. I first read her story in a magazine while at a prenatal appointment. This was before we learned anything was wrong with Jeremy. She is from Utah and was in a plane accident with her husband and the pilot. The pilot died in the crash, and she and her husband survived. Stephanie was burned over 80% of her body and has had extensive skin grafts and reconstruction. The amazing thing is her attitude. Instead of letting this take away her life, she has embraced life more fully and has been quite the motivational speaker. She has even been able to become pregnant again, and has been featured at many women's conferences and on Oprah. She has been featured in many magazines and has even written articles. I follow her blog here: http://nieniedialogues.blogspot.com/.
One thing I love about her is that she is real. She writes about the bad days as well as the good. She has had a rough pregnancy and is not afraid to let you see her. She laughs, she cries, she makes fun of herself. She makes the best out of a rough situation. She truly is an inspiration, and seeing her situation makes ours seem a little better.
On a different note, this blog started out as a way to let family and friends keep up with our lives since we live so far away. It has become so much more than that now. I have considered on many occasions making the blog private, but I also don't want to take away from those who read this blog either. I know more than six people read this, but that is all I have in my followers section. I love having readers and I love comments. As this blog becomes more--details all that we go through with Kai, I wonder how "public" I should keep it. I already have it unlisted so you can only find it if you have the blog address itself. Is that enough? I am going to put a poll up and based on the results (and comments) I will decide which way to go.
So, dear reader, since this blog was originally made for you, it is up to you. Vote or leave a comment. If the blog becomes private, all I would need is your email address to send an invitation and you will be able to see the blog just as you do now. :-)
Sunday, September 4, 2011
Bath Time and More
J had Kai sitting up in the boppy the other day and for a short time he was really enjoying it. He was being so cute looking around and we were able to get this adorable shot. He was sitting straight and then just before the shot he decided to move and angled his neck just as the picture was taken. When we tried to straighten him again for another try, he decided he was done. It is really hard to get a good picture while he is awake because he moves so much. He is getting stronger and starting to lift his head more.
Kai has found his hair! I caught him twirling his hair with his fingers and looking oh-so sleepy. If we hadn't grabbed the camera and gotten some pictures, he would have fallen asleep playing with his hair.
We have had some questions about how we bathe Kai--ie do we have to give him sponge baths? The answer is no. We are able to bathe him just as a normal baby; we just have to make sure we don't get water into his trach because it goes straight to his lungs. When we give him a bath we have the trach nose and the oxygen attachment, which covers the trach opening so water is not so easily able to get in. Obviously, we cannot completely submerge Kai, but you wouldn't do that with an infant anyway.
Saturday, September 3, 2011
Cost Benefit Analysis
Yesterday was a bittersweet day for me; it was my official last day of work. I am now officially a stay-at-home-mom. I will miss the people I work with and even miss working, but I am not superwoman and with the care that Kai needs, I cannot do it all. Work was originally a reprieve--a way to get out of the house, but it has become an additional stressor this last week. I was supposed to work all week and because of Kai's PICU visit, I was unable to work Monday and Tuesday. Wednesday was end of the month, and the company updates their systems at that time, so I couldn't work. Thursday was another appointment up at Primary Childrens, which was only supposed to have lasted an hour but I was there for over two and a half hours. Because of that, I hit traffic on the way home from Salt Lake and ended up being two hours late for work. The added stress that work creates is just not enough to justify working.
Additionally, the person that we have had watching Zuri and Kai while I work won't be available for much longer. We knew she would only be a temporary fix while I put in my last two weeks. I was going to work a regular shift on Fridays from 8-5, since J doesn't work Fridays, but when we weighed all the pros and cons, working just didn't come out on top. We can't just have a regular person watch Kai because they have to be trained on how to care for him and be willing to care for a child with such needs.
As the work day ended yesterday, my boss came up to me and told me that I have been an excellent employee and that if I ever need a job again to call him. Because of the work that I have been doing, they are going to implement a night shift. It was so nice to hear how valued I am to the company. I have been grateful for my chance to work there, especially since they have been willing to take me back twice now (the first time after we got back from Georgia, the second time after Kai was born).
On the other hand, I am excited to be able to be home with my little ones. While I enjoy working, I have felt the weight of me being away from home. It has been hard to be away from Zuri these last two years. I will enjoy being home again. Zuri is getting older and will start preschool next year. How fast time flies.
Additionally, the person that we have had watching Zuri and Kai while I work won't be available for much longer. We knew she would only be a temporary fix while I put in my last two weeks. I was going to work a regular shift on Fridays from 8-5, since J doesn't work Fridays, but when we weighed all the pros and cons, working just didn't come out on top. We can't just have a regular person watch Kai because they have to be trained on how to care for him and be willing to care for a child with such needs.
As the work day ended yesterday, my boss came up to me and told me that I have been an excellent employee and that if I ever need a job again to call him. Because of the work that I have been doing, they are going to implement a night shift. It was so nice to hear how valued I am to the company. I have been grateful for my chance to work there, especially since they have been willing to take me back twice now (the first time after we got back from Georgia, the second time after Kai was born).
On the other hand, I am excited to be able to be home with my little ones. While I enjoy working, I have felt the weight of me being away from home. It has been hard to be away from Zuri these last two years. I will enjoy being home again. Zuri is getting older and will start preschool next year. How fast time flies.
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