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So mommy & daddy are part of an online group of those affected by LM, whether it be themselves or their children/close family member we are there for eachother for support. It is great to have!!! Because we have many people in our lives that support us, but none know truly what it is like unless you’ve been in it.

Now that we’ve had ME for 6 years, we do pretty well and often give support to parents of little ones. There was a discussion about the speech of those affected orally and those who had/have a trach. We remember the feeling of “will she ever talk” when ME was a baby. After all, we didn’t hear a sound out of her til about 14 months. Then for a good chunk of time we only heard it a little and her first word “da” lingered for a while only adding “ma”.

By the time Drew was born we saw a big improvement, but looking back- it surely wasn’t even that great. At the time, any improvement was a big deal! Anyway I shared these videos to show the moms that change does happen and to keep at it with speech therapy and to hang in there. Because even though ME still has speech issues (articulation), she talks pretty well considering.

I shared these videos to show the transition. Brought us down memory lane a bit. She was so cute even though she didn’t talk well. And she was still little our little ME! 😉

Feel free to look back with us…

2 1/2 Years old, holding Drew

a little over 3 yrs old, singing

and we gave them a current video, however I cannot post that because she decided to say our home address – and I made it private as we don’t want our address out on the internet. Instead I can give you this video from Christmas, but note her voice wasn’t quite as good – sounds a bit off, but she was healing from her trach removal, the hole was still open – yet covered by gauze. However a lot of us know how she sounds these days 😉

5 1/2 years old, Christmas verse

The little princess has turned SIX on May 20th. We really can’t believe it. She is looking and acting so much older, and just saying the word SIX reminds us, she’s not a toddler, she’s a little girl. WOW. And what a beautiful, strong, happy little girl she is!
She had a wonderful birthday with her friends at a nearby roller-rink. And then celebrated with both Mommy & Daddy’s sides of the family. It was a never-ending celebration- but would you expect anything less from us? or for her? 🙂

She doesn’t go to the doctor until June 21st, but according to mommy’s measurements she’s about 41″ or so, and 34-35 lbs. She recently has been eating a lot and that would explain the recent couple pounds she finally gained (she was hanging around 32 for the longest time!). She also probably grew a good inch. And now of course at her birthday she is moving into the next size. Seems every year around her birthday she moves up a size. So now we’re in a 5 or 5t. However her little tiny feet are a size 9 toddler, the same size as her 3 1/2 yr old brother! haha.

Speaking of feet, don’t ya just love the way she’s got her feet in this photo we got done of her? LOVE IT!

Anyway, we are nearing the end of Kindergarten. She’s got a few weeks left which are full of events and trips. She goes to SPLASHDOWN with the school (of course mommy & daddy are joining- Drew too). And she said it herself “Mommy, if I still had the trach I wouldn’t have been able to go to splashdown right??” – Right! We are truly blessed and are looking forward to a summer filled with WATER! haha.

Well just because it was Mary Elizabeth’s birthday, doesn’t mean we can forget about our little Drew… Here he is waving to ya. Lately with all the birthdays going on (cousin Evan, his sister, his grandma etc) he is not happy that his isn’t close by. He’ll tell ya his birthday is in November, but he wants November to be tomorrow! And well anyone in NY or nearby, knows we hope November takes a LONG time to get here so we can enjoy this weather. He’s growing up fast though… and learning so much. He is nearing the end of his first year of preschool. Mommy & Daddy think they have decided that he will attend preschool for 3 years. His teachers think he’d be ready, but they also agree that there is no harm in holding him back. With his birthday right at the end of November, and the cut off being December 1st, he could go either way with when he starts Kindergarten. We’ve heard a lot of people say they wish they held their children back (that were end of the year babies), but we’ve never heard them say they wish they didn’t hold them back. Being the oldest in his class is something we’d rather than him being the youngest and it’d be a nice and easy transition because there are 3 different classrooms in his preschool and then he’ll start a whole different school after that. So he won’t notice at all. He also gets a little bit more time before having to go to school all day long. Which is a nice thing for him, and hmmmm not as nice for mommy. hahaha. Just kidding, the one on one time with him has been nice with Mary Elizabeth is in school, and I think it is great for both of us to enjoy it a bit longer.  Anyway, these are just our thoughts for now. We shall see.
He’s still quite the active child…. so thankfully spring & summer have helped that. We’re out and about at parks, and now as the heat approaches – we’re in the pools and such.

We hope to all have a wonderful summer and have lots of things planned. So we’ll be updating as we go along!

OK so the title was cheesey! haha. Couldn’t think of one. Basically, we’ve been having a lot of fun enjoying the warmer weather. We got to kick off the fun back in April when we went to WALT DISNEY WORLD.  Boy did the kids have a blast! We had a great time, great weather and it was just all around a great experience. Wore us out a bit- sure… but unforgettable none-the-less. We were there for 7 days and spent 6 of them visiting Magic Kingdom, Animal Kingdom, Epcot, and Hollywood Studios (some we went back to again). From 8:30am til 9:30 pm (some nights MUCH later) we were on the go. By the last day we were exhausted so we decided to use that day to go to Typhoon Lagoon. It was a great water park and we had a lot of fun, but I won’t lie- we spent a good amount of time in the Lazy River or just hanging out in the “pool” type of things they had. It was refreshing and relaxing. And it was EXCITING because Mary Elizabeth had her first experience in water with the trach out. She was in that water right up to her shoulders. And she went down the little kiddy water slides and all. It was a dream come true really for all of us. Finally!!! Now here comes the sad part. The water park had water everywhere and it really wasn’t ideal to have your camera out. And it wasn’t smart to leave it sitting on a table with your towels especially if you have an expensive one like we do. So we bought one of the disposable water proof cameras they were selling there. We took all sorts of pictures of her first experience in the water. Later Drew got a hold of it and mommy & daddy both thought the other parent got it from him. But apparently neither of us retrieved it. And thus it was left behind. So far Disney has not been able to find it. They have tried though. So we have no photos to look back on of her first true swimming experience. 🙁

Anyway… moving forward. We came home and pretty much jumped right into Easter. We had a great Easter with the family and the kids loved opening their baskets and going on their Easter Egg hunts etc. In with all the fun of it, they did focus on what it was all about. And that meant so much to us to hear it from their little mouths.

In the midst of all of that we got an email from one of the people that work for Dr. Waner and she said he will be away for Mary Elizabeth’s scheduled surgery on June 30th. They offered us a date the week before and at first we took it but then we remembered some family events and decided to push it back. Her next surgery is now scheduled for August 4th. This will give us a chance to not miss out or be in recovery mode during most of the events we have … and yet she will most likely be good-to-go for the next school year.

Right now we’re enjoying the nice weather, going to the park, on playdates, having fun just in the backyard. We have a busy May and June and think it’s going to fly by! Which means before ya know it Mary Elizabeth will be 6 years old and done with Kindergarten – WHOA.

Both kids are doing really well with school and had a good year. It was quite the adjustment for Drew but he’s doing well with it all. And as for ME, she loved every minute of it and has done well in the transition to the new school this year. Despite all her time off for surgeries and whatnot… she is right on target for where she needs to be. She’s reading lots and starting to tell time, counting money and doing some math as well.

Well we’ll be sure to check in and share how the big girl made out for her birthday… it’s coming soon!!!!

Ok, so we’re done with our round of appointments.

The appointment with Dr. Waner was good, Mary Elizabeth’s stitch line had some puss bubbles and they popped them and cleaned her neck up a little. We discussed what ME needs in the future and it looks like things are finally slowing down for us soon. Her next surgery will be on June 30th and if all goes well and continues to remain stable, that will be it for major surgeries for a while. She will still continue to have oral surgery or lasering to the tongue etc from time to time but nothing like we’ve experienced in the past almost 6 years. So that’s great news. This surgery on June 30th will be to surgically remove the mass that is left under her jawline. We call it the “ball” because it’s a little round area underneath there. Dr. Waner says it’s not all her condition, it’s a bit of scar tissue as well. Our guess is that she will have a drain put in and whatnot, and if you can remember how the chin surgery went…. it was quite the rollercoaster ride. So if you can start praying now, that’d be great! 😉

The sleep study went pretty well, but mommy did NOT sleep at all. It was a long night. ME was exhausted as well, as she went to bed late (took long to get her all hooked up- but boy was she a trooper about it!) – and she got up early because once 6am rolled around they turned on the bright light and told us we were all done. In addition, she had a very interrupted night of sleep. So yea, very tiring. In the picture you see she has gauze wrapped around her head, this was actually a good thing- usually they use a glue to put the leads on your head- but for kids there they use a sticky jelly like substance – which makes it kinda-stay but not totally securely so they wrap the gauze around the child’s head to keep them there. So it worked out better for when we washed her hair out. In the middle of the night they went to put the cpap on her, and she started swatting at the technician. LOL- it was kinda like she said “leave me alone dude I’m trying to sleep.” She did fight it for a bit, but eventually we tried different ones and she settled on one. Until… we turned the air on. Then she got very upset. Seemed like she thought it was anesthesia, so mommy explained and soothed her and we got it going. She did wake up 2 more times and tried to pull it off, but eventually did ok. Her breathing was definitely better with it on, so I can guarantee we’ll be getting a call with the results of the sleep study and setting up her medical supply company to send out a cpap for her.

While all this was going on, we found out that a family we know from church got in a bad car accident. She has two sons, one of which was there when ME went and is there again this year, and the other who is in his first year of preschool in Drew’s classroom. The older one unfortunately passed away from injuries in this car accident and the news was devastating. We were all shaken by the news and oh the tears did flow. We hugged our kids so tightly. It definitely puts things in perspective. It was also hard for Jessica’s mom as she was the teacher’s assistant in his class for 2 years now. Anyway, prayers for this family would be greatly appreciated.

Here is the link to his obituary:
http://www.legacy.com/obituaries/northjersey/obituary.aspx?n=Andrew-Kolan&pid=149121844

Well we will continue to update as things come up. Thanks for reading as always 🙂

So lately we’ve had a lot of appointments going on… which pretty much means we’re back and forth down to the city. Kinda wish we had our own little tiny jet that could just fly us down there quick and back!

On Monday Mary Elizabeth had a routine check up with an orthodontist in the Bronx. They are keeping an eye on her because they will do some preventative care in the future before braces in order to make sure things don’t get too crazy in that mouth of hers. We talked about ideas on “spacers” and things like that. Nothing right now, but they’ll check her every 6 months or so to make sure things are continuing in the right direction and when the time is right – we’ll move forward.

On Thursday we had the consult with the sleep specialists on the East side of NYC. The doctor we spoke to was very nice and thorough. She asked a LOT of questions and even got on the phone with one of the doctor’s from Waner’s team. So we really felt like they got a grasp on the entire situation. They understood we were coming from far, so they tried to make arrangements in order to make things easiest on us, which was nice of them as well.

Sooooo…. next week looks like we have 2 more trips to NYC

On Tuesday, we have a follow up appointment with Dr. Waner. We will discuss everything she’s had done and how she’s doing with it- and discuss what’s in her future, near or far. The highlight of this appointment is we will get to see our friends from Canada who have a son Maddox who has the same condition as ME does. The kids enjoyed playing with him in the past, and we enjoy the company of his parents. So we will probably grab some dinner after since it is a late appointment anyway 🙂

Then, finally on Friday March 4th – ME and mommy will head down yet again for the sleep study. However, prior to the sleep study we have an appointment- at 4pm to be fitted for a cpap mask. Then we have some time in between to grab a bite to eat or whatever we plan on doing…. and at 8pm we’ll go back for the actual sleep study. Reason why she’s being fitted for a cpap mask prior to the sleep study is they plan on doing a 2-part sleep study. This will be to speed things along and not make us drive back and forth and keep figuring things out.
The first portion of the sleep study they’ll just do the regular testing, diagnostically to find things out. Then the second portion they will try her on the cpap to see how and if that helps. Full results of the sleep study won’t come in for a week after it… but I assume we should have an idea of how she did after that night. After all, the assumption is that mommy who will be there the entire time, will probably get NO sleep during this study! Honestly, I’m not sure how well ME will sleep either, if you know anything about sleep studies they put a bagillion wires all over their face/head and such. Should be rather interesting, to say the least!

We’ll check back in after the appointments are done with an update! Thanks for reading! 🙂