www.BabyRaia.com

That’s right, surgery is cancelled again. And yes, it’s because she’s sick. She was hardly sick last time if you could even call it that. But this time it’s the real deal. Fever, congestion the whole nine yards. And she’s swollen too……

You see when she gets sick her malformation is affected as it’s a
lymphatic one. The lymphatic system kicks in to fight
sicknesses and for her, the extra fluid builds up as her lymphatic system
doesn’t drain properly. So anytime she’s pretty sick- she has these
flare ups, and is swollen. Her tongue & face are right now, so it
adds additional discomfort.

So due to that she’ll have a round of steroids/antibiotics prescribed by Dr. Waner so that it doesn’t get worse and so that there is no LM infection that becomes a problem. She should be feeling better in a few days.

She was however checked at the pediatrician’s office and is clear of anything like strep or ear infections etc.

So….. onto the new date- October 25th.
Prayers are that she can be free of any complications, sicknesses and get the surgery she needs and that surgery goes better than expected when it finally does happen.    

WOW only 10 weeks left (actually 9 1/2 now since I was supposed to post this on Tuesday but got too busy). Time is moving by quickly. I feel like I just found out I was pregnant. But we’ve had a lot going on. And I don’t think there will be a dull moment before or even after this baby comes. I hope he/she is up for having a big family and lots to do!!! 🙂

I’m feeling very well, doing very well. Both of my pregnancies have been pretty easy on me in that I don’t have much to complain about. Baby is kicking up a storm and we love every moment of it. We tried to get ME to feel it but she doesn’t want to stay for very long- she’s too busy and has other things on her agenda!

With ME I had quite a few dreams about her, that I was having a baby girl and she had dark hair and looked like Andy. Of course at the time I didn’t think much of it- because that’s what I wanted to have and figured it was me wishing for it. But it ended up true- I had that dark haired baby girl who looked like her father but had my nose! haha.
This time around I have no clue what-so-ever. Some days I think I’m having another girl, some days I think boy. A lot of people say boy (check the baby pool for proof). But they also said boy with ME too… so who knows! I am fine either way, I want the baby to be happy and healthy. And I think of ME having a little sister and that’s cute, then I think of her having a little brother and that’s cute too… 🙂

 Anyway, not much to really report as things are going smoothly… so no news is good news I guess!

PS…. I am btw very happy to see people are starting to use the "Comments" section of this online journal. If you haven’t noticed- you can click on where it says "No Comments" right now (or it will start to count them and say 1 or 2 Comments" and leave us a little note about what I write!

OK though today wasn’t a major surgery, I thought I’d post an update anyway.

We were late to the hospital due to a lot of traffic. But it all worked out. She ended up going in at 10:30 (instead of 9:30)… and we were in the car 50 minutes later. Fast I know, but this was minor compared to a lot of things she had done as it was a steroid injection to the tongue to help with swelling from the previous laser surgery.

After Andy left the Operating room to bring ME in, 15 minutes later the Dr. came to see us. He figured he’d examine her mouth a bit while he had her out since she’s not very cooperative when she is awake.

Here are the basics of the convo:

They are taking it easy on the tongue for a while to see how she grows into it. They don’t want to do too much as you can’t add to the tongue size- only decrease it, so they are treading with precaution in order to make sure it doesn’t become ‘too small’. And yes while it still appears quite thick, any surgery to it makes it smaller in length as well. This does not include laser procedures as they affect the surface only.

His next thoughts on working on the tongue is to make an incision to the floor of the mouth underneath the tongue and fix the current problem of it seeming to be tethered to the bottom of the mouth.

Basically this means she doesn’t have enough freedom or mobility because it’s stuck down a bit too much with all the cysts there.

An x-ray will be planned to make an online model of her jaw line in preparation for her future surgery- where they cut the jaw bones on either side, pull it back and lift it up, since it’s displaced. They need to determine the right timing on this surgery and be sure they don’t do it prematurely or too late- I guess it’s an age/growth thing.

This surgery could be a while away but they still need to make the necessary steps in determining not only when it should be, but precisely how it should be done.

So while talking to him about all this, we then noticed the person who recently joined his team and was standing by his side during the conversation was also one of the Doctors that was there in the room for my c-section/EXIT procedure the day ME was born and also aided in her first ever surgery at 7 days old with her old ENT Doctor (the same day she received her tracheostomy). Pretty cool to run into her as she remembered ME & all.

After talking, we went to see ME, and she was already awake and wanting us. We took her home and she napped in the car. She was absolutely fine today, just a bit tired from being up early, not napping that long and then of course having anesthesia today. So she went to bed quite early. And we’ll be headed there earlier too as it’s been a long day!

First and foremost- here are our surgery dates:

    – This Thursday, September 20th Dr. Waner will do the steroid injection. This had to be done 4-6 weeks after her laser procedure on her tongue, which was about 4 1/2 weeks ago. It is an in and out thing, no recovery etc. 

    – Wednesday, October 10th Dr. Burrows will do the sclerotherapy injection surgery. This was the big surgery that was tricky to schedule. They kindly put us in as soon as she returned from being away (she’s back on the 9th).

We are glad to report that she’s fully over the cold or shall I say "runny trach" that she had. And still has been bouncing around and very happy.

She was thrilled to go to the Open House this weekend of the new class she’s taking! She’s going to love it! She officially starts her class on Tuesday (tomorrow) morning. It’s called "The Little Gym". And they do things like sing songs, do some group activities in a circle, play on the mats, climb, jump and tumble.

So we were out this weekend at that Open House, and also out shopping for a new dresser for her. Since she’s all moved into her new room and her big-girl toddler bed, we need to move all of her clothes over now and she didn’t yet have a dresser in there. The new one is ordered and should be here very soon!  

We have some other great plans for her coming up… Her cousin Evan is coming up the first weekend in October and we’ll do some fall/winter baby clothing shopping, throwing in some picture taking of them in their costumes, and we are going to take them to the farm for some pumpkin picking with the grandmas. And of course celebrate Aunt Michelle’s birthday (an eventful weekend of course!). Some great fun to bring in the harvest season and for her to enjoy before she gets that big surgery.

Though keep in your prayers that she remains healthy and we don’t have any more postponements!!!!  

That’s right, we had to cancel! ME is sick- well she’s barely sick but enough to have to cancel. I’m sure it’s because we’ve been at a lot of events lately, but she caught a little cold. And that’s really all it is. No fever, she’s happy, having fun, eating and everything. It’s just a clear mucous runny nose (or in her case a runny trach).

This was a real disappointment for us since the surgery is a big one, hard to schedule and has a long recovery. It was really perfect timing for us to have it done tomorrow. However, there’s nothing we can do. The dr will be gone for 3 weeks. The office is trying very hard to schedule us right after she gets back, the sooner the better as we don’t want it to get too close to November as that’s close to my due date in very early December.

However, Dr Waner was going to do a steroid injection before they did the sclerotherapy injections tomorrow to help with the swelling of her tongue from the last laser procedure. He needs to have that done from 4-6 weeks after the laser. So we might be going to do that next week. That has no recovery time and we’re in and out of the hospital within an hour or so.

I’ll update everyone with the dates as soon as they are scheduled & official. 

IN OTHER NEWS….

ME is now in her big girl bed. That’s right… out of the crib and into the toddler bed. It was beginning to get me nervous as my little girl so easily went to bed all the time and slept very well… and it was very hard to get her in the toddler bed. But just a few days of persistence and she is doing wonderfully, sleeping well and going to bed well in it. She’s such a good little/big girl! 😉 It is a bit harder with nap time but we’ll get there. YAY for ME!!!!