More treatments coming up...

The dr confirmed our suspicions, and agreed that Kaiden's ear and cheek seem more swollen than last time he saw him. We have an ultrasound scheduled for Christmas Eve at 9:00am. Good side of that is that both Mike and I are off work, and it's early, so we shouldn't be there all day long. We should still be able to salvage Christmas Eve after the appointment. We will also spoil him rotten the next day!

Hopefully, we will have another schlero (injection) appointment scheduled for the beginning of January. If they aren't able to fit us in then, we will have to wait until after the new baby comes. Probably March or April. The dr agreed we should get it done now, as we always wait awhile after each injection to do anything else.

I originally thought the timing was horrible. But if we can get this injection appointment done before the baby comes, then Kaiden will hopefully still have some time to recover from it before becoming a big brother and dealing with that big change too. I'm not worried about the physical recovery, as he always bounced back quickly after being sedated. He just needs a good sleep and a good meal, and he's back. I'm more worried about his emotional state afterwards. He was so untrusting of us after the surgery, that I hope this appointment doesn't bring back those memories or emotions. I guess only time will tell...

It's been awhile...

It's been awhile since I've wrote on this blog. I guess life just gets busy, and I get more forgetful.

We've only had followup appointments since Kaiden's big surgery in March. He's been looking great! We've been so blessed that the surgery went so well. It did take a long time to get over the guilt of putting our baby through that. But now that we see the real results, we realize we did make the right decision.

Just when we start to almost forget about what this kid has been through, something pops up. It will be a lifetime roller coaster ride of happiness, then worry. Unfortunately right now, there seems to be a little bit of swelling infront of his ear. Two hard lumps seem to have popped up from nowhere. We do have another followup appointment on Tuesday, which is great timing, so I will bring it up to the attention of our doctor. It just sucks...just kind of a wait and see thing.

Also, the timing couldn't really get any worse! We have another baby on the way, due January 29th and it's coming quickly. If we need to book ultrasounds or an injection appointment, they may just have to wait until after the arrival of this new little one. I know worrying and stressing out about it isn't good for me, but how do you not! I once again wish I could just take this all away from him. But I have to try and stay positive, and pray the swelling will reside on it's own. This is the first time we have had random swelling without reason, since surgery. He did have some swelling when he had a double ear and throat infection, but it resided once the infection was over. Now, he seems healthy, so not sure what is causing this all of a sudden. It makes me realize this really is a lifetime journey for this boy, and us.

The roller coaster ride continues...

Our appointment was moved up from September to June. It's coming up on Tuesday. My original thought about it being moved up was, of course, worried. I thought maybe the doctor wanted to move it up because he was concerned the cysts were growing back. Now, I'm actually glad it was moved up.
Our usual doctor has taken a medical leave, and we are meeting with another dr. We've met him in the past, for a second opinion, and he also helped on Kaiden's surgery. I'm glad this appointment is coming up quickly because we've been through quite a bit lately.
Kaiden had an ear and throat infection a couple weeks ago, and it laid him out for 4 days. The poor boy just slept on the couch all day long. Didn't eat, didn't talk, just slept. We had him on antibiotics for 10 days. His cheek and ear area became very hard and swollen. It even seemed like it was affecting his speech and tongue. Obviously, we were very concerned and it took our doctor in Hamilton 2 days to return my phone call. Our last doctor would email a reply within hours, and definitely call back the same day. The outcome was that swelling is normal when he's fighting an infection....good to know after freaking out for 2 days!
Once he was off the antibiotics, he caught a cold. He's still fighting a bad cough, but a checkup with our local doctor confirmed nothing more was needed in the way of antibiotics. He's pretty much back to his usual self...except for his cystic hygroma. It is still hard, and he doesn't like us touching it. Even putting a shirt over his head makes him cry. Hopefully we can get some answers on Tuesday, and a future game plan.
I'm still in denial that we will be dealing with his for his whole life. I seem to live in a fairytale world where one day I will wake up and it will all be over! Time to get real, I think!

Follow up appt complete!

We had a follow up appt with our dr that did Kaiden's surgery last month...got good and not so good news. Good news that there is no nerve damage, he was nervous about his tongue since it was a little droopy, but it seemed to have corrected itself. He was very pleased with that, as we were all a little worried for awhile there. He was also pleased with how much the swelling has gone down. On the not so good side, he thinks some cysts have grown back behind his ear, and we may have to do more schlero back there. The area infront of his ear, he will hopefully "grow into," and the area under his chin is still a bit swollen. Next appt September...glad we have the summer appt free!! I have to admit I was hoping to hear, "it'll all go away and he'll look perfect!" I need to get out of this dream world I live in!!

Follow up appt is looming...

Kaiden's surgery has been over a month ago. I'm impressed that he is back to his rowdy little self. His personality and spunk are back, and I am so thankful that this surgery didn't change the amazing child that he is. It was a rough go for awhile, he didn't trust us, and thought we were always trying to hurt him. But yet he didn't like being away from us. That's back to normal too, he doesn't mind at all when I drop him off at daycare anymore. He'll even let me clean his swollen ear, and the incision has healed very well.
He is still swollen, and we were hoping by now the swelling would be much less. It's hard to know what to expect, as this is the first surgery we've gone through. We have a follow-up appointment on Thursday, and I'm nervous to see what the dr thinks about his progress. His chin  and ear are still noticeably different. I got my hopes up too high that his face will magically go back to "normal." I'm wondering now if that will ever actually happen. It's impossible not to worry that the cysts have grown back and that's why it hasn't reduced as much as we had hoped.

I guess we'll just wait and see what the dr says on Thursday...here's hoping for good news, and that this is a typical recovery!

Surgery was successful!

Surgery was on Tuesday. It was scheduled for 4 hours, and actually lasted a total of 9 hours! We were the first ones in the operating room waiting area and the last ones! What a long day, but looking back now that was the easy part! The dr had managed to remove 90% of the cysts, found all the nerves and checked them all afterwards too. He was very pleased as we spoke afterwards.
Kaiden was admitted to the PICU at McMaster since the surgery was much longer than anticipated. He stayed overnight there, and we just went back to the hotel since we weren't allowed to stay. The hardest part of that day was seeing my poor baby with tubes coming out everywhere and very swollen.

The next day was the worst day of my life. He was extubated in the morning, and we just cuddled him all day long. He would wake up, scream and flail around in your arms, then settle back down. It was heartbreaking seeing him in so much pain and not being able to do anything about it. I had serious regrets about agreeing to do the surgery at this point. I was just heartbroken, stressed, worried and completely overwhelmed with guilt.

We were discharged from PICU later that day and sent to the pediatric ward. I stayed overnight with him the first night and I was terrified about how he would sleep. But he feel alseep in my arms and I put him in his crib around 8pm and he slept until 11pm. He woke up, pulled out his IV and had soaked through his diaper. Once cleaned up, he was back to bed until 3:30 am. Then he woke up and was so alert!! We watched a movie and he was back to bed at 5:00am until 7:00am. 

The next day was a complete 180! He was eating, drinking, got off the morphine and got his IV out. We even went to the play room and he played around for about an hour. Still slept a lot, but his spirits were definitely better! WHAT A RELIEF!! Mike stayed that night and he only woke up once at 11:00pm, watched a movie with Mike and then slept the rest of the night.
Friday, was about the same. He didn't sleep good in the morning, so had a three hour nap after lunch. Then we wandered the halls with him, and he enjoyed just walking around, exploring the hospital. I stayed this night, and he went to sleep around 8pm, and the nurse came in 10 minutes later to get his vitals! So he woke up and didn't go back to sleep until about 10pm. But he slept all night until 7:00am.

Saturday, we saw the dr that did the surgery and he was pleased with Kaiden's results. He is swollen and it will take time to go down. The drain will stay in until Tuesday, when we follow-up with him. We were discharged about an hour later, and made our way home!
We had noticed his tongue is a little different. He was having a hard time eating in the beginning. He ate a lot slower than he used to, and packed food into the swollen cheek. He seemed to be drooling a lot more from that side too. But the dr said his nerves could be sleepy and could wake up over time. He is talking normally, and seems to be getting better with eating. So we'll wait and see on that.

Once home, we all had a nap after lunch for 3 hours! I can't wait to sleep in my own bed tonight! Kaiden got used to falling asleep in our arms over the past few days, and had a hard time getting to bed. He seemed freaked out with the bath, and almost seems like he doesn't trust us, once we start doing something. He's been poked and proded so much over the last week, it seems like he is expecting the worst. The nurse is coming tomorrow to change the dressing on the drain again. He's going to be suspicious the minute she walks in the door! I just want some normalcy back in his life again! Poor kiddo, I can't believe how intense this how process was. Again, Kaiden has amazed me with how strong he is. He is a fighter and an unbelievable little boy. Hopefully, will be quite the success story...

Kaiden made the local newspaper

There was an article published about Kaiden in the local paper. We're hoping to raise awareness for his condition and the Travelling Awareness Bears....have a read!


TheRecord - Kitchener toddler being treated for birth defect

Surgery day is looming...

It's Sunday...surgery is on Tuesday. To make things a little more stressful, Kaiden has a runny nose and has been sneezing a lot the last two days. When I dropped him off at daycare on Monday, one of the babysitters was sick. My gut reaction was to just take him right home, but I left him for the day. I feel bad taking more time off work since I'll be gone for 2 weeks so soon. But looking back now, I need to realize to trust those gut feelings. He probably got this cold from her. I'm praying he will be rid of this tomorrow, so surgery goes on as scheduled. We've come so close, and to have it postponed would be heartbreaking. The countdown is driving me crazy, it's coming so fast, yet I've been dreading it for so long! I just want it over with, and my little man on the mend.

We've decided...

We had our ultrasound last Thursday. Kaiden was once again great, waiting almost an hour and a half with me. Once we got in the room, he squirmed a bit at first, but then settled down once we started reading some books. He let the lady do her thing and we were done in about 10 minutes.

We got the call from the dr on Sunday. There are 3 cysts that are about 2 cms in his ear area. So our choices are the same as before...injection then surgery, or vice versa. It's a tough decision. I got a lot of great advice from other moms on facebook, who've gone through similar things and the majority are saying to get the surgery done while he's still young. We can then do an injection on his ear area, if that isn't as successful as we hope, there is a possibility of a second surgery on his that area. I feel like we've prepared for this surgery mentally already, so why not just get it done now. The date is set for March 27th, and we have less than one month until that day.
I dread the thought of leaving my little boy on the operating table and having this done to him, but it's either now or later. I feel like the timing is just right for having this done now. I pray this is the right decision, and there are no complications to his precious smile!

Consultation

We had a consultation and follow up today. I was expecting the dr to simply say surgery is set and that's what the next step is. After a few pokes he said we can either prodceed with surgery, scheduled for March 27th or continue with injections. He will book an ultrasound next week to see if there are any cysts that are injectable now. The mass feels much softer to him, so he thinks some scar tissue may have healed, since the last schlerotherapy session was 6 months ago.
So...we wait...until we have the ultrasound, hopefully next week, and decide from there. I'm not sure what results I want from the ultrasound. I was preparing myself for the surgery, and am kind of dissapointed that is might be postponed another 6 months. I think about it almost everyday, and think if we do the surgery now, the rest of the treatment will be relatively minimal compared to that....I don't know....

...

"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".

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!

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!!

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

                                                                      The morning of the injection

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 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...

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!!

The waiting game...

It's been a month and a half since the last injection. I had hoped we would've at least had another one scheduled by now, or had a follow-up appointment. But things take SO long to get going. I emailed pictures of the progress on Kaiden's neck. It's funny how all of a sudden I notice how much smaller it has gotten, and am happy. Then the next day it seems big again, and I'm discouraged with all the work we have left to do.
The dr wants to do a CT scan before continuing with injections, just to compare to the prior one. I tried to push for another injection asap, but he wants to wait. I guess he is the professional!!  This is such a waiting game...
I'm back to work in 9 weeks. I can't believe it. It's going to be really exhausting working and doing these appointments. Plus my husband is working out of town all week, so I'll be on my own. At least my work is willing to compromise with me and give me paid days off for his appointments. I really lucked out with my manager being SO supportive through all this.

Kaiden at 9 months old

Some people should just shut their mouths...

I was at the grocery store today. I had an older woman come up to me and tell me how cute Kaiden was. I was so happy. It feels like people are just looking past his neck and seeing the true cutest of this little dude!
Then, I was waiting in line and another lady came up to me. She asked how old he was, and then asked what was wroung with his face. I told her and she said, "He'd be so cute if he didn't have that on his face." I was speechless. I didn't even know what to say. I knew the people in line where staring at me, wondering how I would respond. I almost cried right there. Luckily, she walked away before I slapped her! Then I just said out loud to Kaiden, that he is cute no matter what. He really is, and I want him to know that.
Some people just make me shake my head...

New friends, new advice, new strength...

I came across a few other people dealing with children with cystic hygoroma today on facebook. It's nice to know I'm not alone. I feel bad about not posting pictures of Kaiden's neck on facebook. I'm not embarassed. I feel like I need to protect him from ridicule. I feel like it will all be over soon, and I can pretend it never happened. Is that completely ridiculous? He's 9 months old today, and we are still a long ways from being rid of this. I never imagined it would take this long. But as I hear other stories, we are lucky. We don't have to deal with a feeding tube, we don't have to deal with surgeries (yet), we don't have to deal with other complications...

I did come across this quote and it says alot...

You Are Strong
How often has it happened - an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you brush it off, and maybe even feel a little condescended to. But you know what? They're right. You are strong. You are facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be strong. But appreciate that strength now. It makes you special, capable, a force to be reckoned with.