"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we were chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all-"Real Love".
Friday, December 16, 2011
Tuesday, December 6, 2011
No More Injections
We had an ultrasound appointment November 23rd, and the results showed only small cysts left. The largest two were about 2cm. The dr has advised that he believes we've done all we can with the injections up to this point. He believes the next best course of action is surgery. We have an appointment scheduled for February 16th just to discuss the risks, procedures, recovery time expected, etc, etc. Then we will proceed with surgery either the end of March or early April.
I guess I feel good knowing we may be coming to a close on "Kaiden's Journey," but I also realize realistically this is something we are going to have to manage for his whole life. The dr has advised he won't be able to remove everything, but will do as much as possible. I guess I am also happy we are doing this now, instead of at a time when he would remember it. They do say babies heal faster than adults, so that's a positive point too!
I know Kaiden will prove again how strong he is and he will make me even prouder of him. I love that little man so much!
I guess I feel good knowing we may be coming to a close on "Kaiden's Journey," but I also realize realistically this is something we are going to have to manage for his whole life. The dr has advised he won't be able to remove everything, but will do as much as possible. I guess I am also happy we are doing this now, instead of at a time when he would remember it. They do say babies heal faster than adults, so that's a positive point too!
I know Kaiden will prove again how strong he is and he will make me even prouder of him. I love that little man so much!
Monday, November 14, 2011
HAPPY BIRTHDAY KAIDEN!
Kaiden turned one on November 8th. The last year went so fast, and was filled with many ups and downs along the way. I am so proud and blessed to have this little boy in my life now. Even though things haven't been perfect, I've loved every minute of it. Looking back on this past year, it's amazing to see how much my life has changed. It's not about me anymore, it's about him. He gets more personality, more friendly and more funny everyday. It's so amazing watching him grow, learn and try new things. You always hear that time flies...but you don't realize it until you have kids!!
On a more negative note, we were orginially told we'd be done all the treatments and procedures by now. It's taken a lot longer than originally expected. We have an ultrasound scheduled for next Wednesday to see if another injection would be worthwhile, or if we'll just schedule surgery for next year. My thoughts are torn about this. On one hand, I'd like to just continue injections. They aren't as invasive or traumatic for him. On the other hand, I'd like to do the surgery and possibly be done with this for awhile. But thinking about it, is so hard. I wish I could just be the one going through this. I hate seeing him have to deal with this.
But he is a strong little boy, and he makes me proud of him everyday! Happy Birthday Kaiden!! We love you so very much!! Let's try and keep this one more positive!!
On a more negative note, we were orginially told we'd be done all the treatments and procedures by now. It's taken a lot longer than originally expected. We have an ultrasound scheduled for next Wednesday to see if another injection would be worthwhile, or if we'll just schedule surgery for next year. My thoughts are torn about this. On one hand, I'd like to just continue injections. They aren't as invasive or traumatic for him. On the other hand, I'd like to do the surgery and possibly be done with this for awhile. But thinking about it, is so hard. I wish I could just be the one going through this. I hate seeing him have to deal with this.
But he is a strong little boy, and he makes me proud of him everyday! Happy Birthday Kaiden!! We love you so very much!! Let's try and keep this one more positive!!
Friday, October 7, 2011
Another injection day done!
I'm finally getting around to writing about our most recent injection. We had an original appointment on Septemeber 20th but Kaiden had a cold so it was postponed until the 27th. I remember lying in bed watching the minutes tick by thinking, "...need to sleep, gonna be SO tired if I don't just sleep..." I'm still so nervous the night before these appoitments. This is our 6th one and you think I'd be used to it by now, but I'm not. I eventually feel asleep only to hear my alarm at 3am to give Kaiden his last feed. Then I was back to watching those minutes tick!
We got to the hospital 2 hours early as required, and waited, waited and waited. They finally told us that the equipment wasn't working for the first appointment so we would be postponed at least another 45 minutes. Good thing Kaiden is easily amused strolling around the halls. I could've had a nap on his stretcher, while my mother-in-law wheeled him all over the place. We finally got in at 1pm, 2 hours behind schedule. I was starving, so I don't get how Kaiden wasn't freaking out. It's almost like he knows what's about to happen.
The injections went well, the dr said they did a lot of work. We had a good chat with the dr and saw his most recent CT scan. Boy, is there ever a lot of cysts wound in throughout all his nerves and vessels. We're just lucky it doesn't affect his airway or tongue. He advised us again that surgery will be required eventually, and still Kaiden may not ever be 100% "perfect." The surgery won't get rid of it all either, because some is so small and right up to his temple. But we'll take whatever we can get, and go one procedure at a time!
He came out of anesthetia quite quickly. He was super fussy, wouldn't drink from the bottle they gave, rolled around and cried for a bit, then fell back asleep. He did this a few times, before we were able to leave about 2 hours later. He drank a lot milk from his cup and ate some berries before we headed home. He slept the whole way home too. Poor little guy. We got home and he ate a huge dinner and had a big burst of energy right at bedtime, so he got to stay up an extra half hour. He slept all night too. The next day he seemed back to his normal self.
We have noticed some swelling which is normal. He had one day where he was not feeling well, 3 days later, and we just cuddled on the couch all day long. He slept a lot for a couple days around there, and is back to normal once again. It's hard to tell if the swelling is gone down at all since I see him everyday. Our next follow up appointment is booked for October 20th.
He also started daycare part time this week. I'm back to work full time in one week, and we wanted to start him early so the transition is easier. He really likes it, and I hope it stays that way! I think it'll be harder on me that him. I was always so worried about having kids make fun of him at daycare about his neck, but I've noticed that the younger kids don't really care. They are more curious than anything. His daycare ladies are super nice, and aren't phased by his neck at all. It took awhile to find a good daycare, but it all seems to work out in the end.
Kaiden at 10 months
We got to the hospital 2 hours early as required, and waited, waited and waited. They finally told us that the equipment wasn't working for the first appointment so we would be postponed at least another 45 minutes. Good thing Kaiden is easily amused strolling around the halls. I could've had a nap on his stretcher, while my mother-in-law wheeled him all over the place. We finally got in at 1pm, 2 hours behind schedule. I was starving, so I don't get how Kaiden wasn't freaking out. It's almost like he knows what's about to happen.
The injections went well, the dr said they did a lot of work. We had a good chat with the dr and saw his most recent CT scan. Boy, is there ever a lot of cysts wound in throughout all his nerves and vessels. We're just lucky it doesn't affect his airway or tongue. He advised us again that surgery will be required eventually, and still Kaiden may not ever be 100% "perfect." The surgery won't get rid of it all either, because some is so small and right up to his temple. But we'll take whatever we can get, and go one procedure at a time!
He came out of anesthetia quite quickly. He was super fussy, wouldn't drink from the bottle they gave, rolled around and cried for a bit, then fell back asleep. He did this a few times, before we were able to leave about 2 hours later. He drank a lot milk from his cup and ate some berries before we headed home. He slept the whole way home too. Poor little guy. We got home and he ate a huge dinner and had a big burst of energy right at bedtime, so he got to stay up an extra half hour. He slept all night too. The next day he seemed back to his normal self.
We have noticed some swelling which is normal. He had one day where he was not feeling well, 3 days later, and we just cuddled on the couch all day long. He slept a lot for a couple days around there, and is back to normal once again. It's hard to tell if the swelling is gone down at all since I see him everyday. Our next follow up appointment is booked for October 20th.
He also started daycare part time this week. I'm back to work full time in one week, and we wanted to start him early so the transition is easier. He really likes it, and I hope it stays that way! I think it'll be harder on me that him. I was always so worried about having kids make fun of him at daycare about his neck, but I've noticed that the younger kids don't really care. They are more curious than anything. His daycare ladies are super nice, and aren't phased by his neck at all. It took awhile to find a good daycare, but it all seems to work out in the end.
Kaiden at 10 months The morning of the injection
Wednesday, September 7, 2011
Finally heard from the doctor...
We finally heard from the doctor today. The entire surgical team has reviewed Kaiden's CT scans and prior photos. There is progress, although it has been slower than expected. There are still a few cysts that are injectable. We will proceed with 2 more injections. One in the next few weeks, and another 6-8 weeks after. They want to wait 4-6 months from the last injection and go ahead with surgery at that point. There are so many small cysts around the major vessels and nerves in his neck, that the surgery will be a whole day long. It won't remove everything, and we will have to manage it for his whole life. Exactly what I hoping and praying wouldn't happen. I don't want Kaiden to have to deal with this forever.
Still hoping and praying for that miracle...
Still hoping and praying for that miracle...
Monday, August 29, 2011
...still waiting...
Last injection was June 28th and we're still waiting to figure out what to do next. We had a CT scan, and finally recieved an email from the doctor who reviewed the scan. There has been improvement but there is still an extensive number of small cysts. He will review with the entire surgical team and let us know...still waiting...
Tuesday, August 23, 2011
Why are hospitals SO disorganized??
We had a 2:00 appointment today for a CT scan. After starving Kaiden since midnight, we left at 12:45 to get there right on time. We did get there about 1:45 and checked in. They came looking for us right away, telling us we where supposed to be there 2 hours ago. Who knew...not me! Maybe the lady scheduling my appointment should've told me that! Oh well...then they went on to tell me they were supposed to call me to push up my appointment by a few hours. That would've been nice, instead I was distracting a hungry baby all morning! I let it go....whatever...shit happens. This all happened after I had to call into the clinic to see when we were scheduled. Must've slipped their mind to let ME know of our appointment date...ha!
Anyways, they were rushing around trying to get a consent form signed, but wanted to start an IV right away while they were waiting. The freezing gel didn't have time to work, but they wanted to try anyways. The first try was in his foot, and when he started screaming and trying to get off the table, they had reinforcements come in to hold him down. The second try was on his hand, and he kept up a good fight! Talk about tramatizing a poor, little baby! When I started crying too, they decided to stop.
Finally, the consent form arrived and was signed, and they decided to sedate him first. I felt horrible and incredibly mad that my little boy had to go through all that.
The scan took about 20 minutes, and he was awake a few minutes after that. After a good feeding, he was his happy smiling self again. Hopefully, this doesn't leave a lasting impression on the little dude. This isn't the last time we will be going through something like this!!
Anyways, they were rushing around trying to get a consent form signed, but wanted to start an IV right away while they were waiting. The freezing gel didn't have time to work, but they wanted to try anyways. The first try was in his foot, and when he started screaming and trying to get off the table, they had reinforcements come in to hold him down. The second try was on his hand, and he kept up a good fight! Talk about tramatizing a poor, little baby! When I started crying too, they decided to stop.
Finally, the consent form arrived and was signed, and they decided to sedate him first. I felt horrible and incredibly mad that my little boy had to go through all that.
The scan took about 20 minutes, and he was awake a few minutes after that. After a good feeding, he was his happy smiling self again. Hopefully, this doesn't leave a lasting impression on the little dude. This isn't the last time we will be going through something like this!!
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