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Both of our kiddies started school this week. Mary Elizabeth’s 1st day of FIRST GRADE (can you believe it???) started rough because the bus never came (although we found out after we waited 45 minutes for it, it came 3-4 minutes after we left) and mommy had to drive her to school. Only a mile from the school a utility truck was on the side of the road where there was a lot of branches and debris – and we went around the truck and as we came back into the lane there was a huge rock that we proceeded to hit as we didn’t have a clear view of it ahead of time. This nice big rock dented the rim and thus – a flat tire. We spent some time on the side of the road but thankfully we had a lot of help from the people at her school. She made it to school and eventually mommy and Drew made it back home (but a little longer than we planned because the car decided to become possessed or something and wouldn’t start yet the windshield wipers wouldn’t turn off – even with the key not in the ignition). Grandpa helped us out when we got home and we were able to have a company fix the dent in the rim. We were also helped out by a client of Daddy’s with tires! So everything turned out fine and ME had a GREAT first day after all! She is in uniform now, but it’s a flexible one, she can wear any color polo or button up shirt with a collar, and dresses, skirts or slacks that are black, navy, khaki or grey. She looks super cute in anything as we’ve learned.

Drew had a great first day at Preschool as well. He was excited to have quite a few buddies in his class that he’s been friends with for a while at church now. He has a nice new teacher and we are really partial to his teacher’s assistant…. Grandma Ray! 🙂 He is very excited about going to school and very into it this year! He was adorable looking on his first day dontcha think??? Because of his sister’s fiasco the day before he missed his orientation- but that’s ok, we’re not new to the school so we know how it goes. And we’re just grateful that he didn’t have the same first day as she did, because he certainly would’ve missed it. The poor lil guy was stuck with mommy on the side of the road most of the morning with his pjs on, no shoes and no food in his belly as we didn’t get a chance to eat breakfast. But he did so well considering. What a good little guy!

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In other news, the previous update we told everyone that ME was going to have a steroid injection on September 19th. That was cancelled. The area that was worked on in August was pretty aggravated and Dr. Waner suggested we do some sclerotherapy. While we thought we were nearing the end, we realized we have more steps. Such is life- right? So we’re moving on to that and Dr. Berenstein who does her Sclero is ordering an MRI for her. We have that set for September 29th. Unlike previous MRIs, she will not be having anesthesia. She is older now and very good with handling her doctor visits and things she needs to get done- so they suggested we give it a go. And we showed her pictures of the MRI machines and explained it all to her so we found her practicing laying still on the couch a few times. She’s funny! She will need contrast so they are going to stick her with an IV, I think that’ll be the only part she’s gonna put up a fight about. But, we know- she’ll do it. After the MRI is done we will meet with Dr. B and then schedule sclerotherapy. So we’ll keep you posted.

In the meantime the kids are well, and we are back in routine for the year!

July came and went, and it went fast. We had so much fun! From swimming, to being with family, hanging out with friends to vacation time!

But then August came, and pretty much right away (August 4th) we had some down time with the surgery. The surgery itself went super well. There’s an area under her jawline on HER right side that we liked to call the “ball” – basically a small clump of cysts there. This area would swell up or get hard when she got sick, had surgery etc. And in order for it not to cause problems in the future, it needed to be removed. So… that was removed, plus there was a channel from there that went up to the tongue, and so that didn’t cause any problems he did an injection there (with a sclerosing agent- as she had done in the past). Then she also had a little lasering done under her tongue and in her mouth as needed. Well with all that being done, they only gave her a small dosage of pain medication while she was under anesthesia. So the anesthesiologists said “when she wakes up she will probably be pretty cranky- as she may be uncomfortable and should start to feel some pain in about 30 minutes”. She slept right through for a couple hours and woke up saying nothing hurt. She acted fine, only tired/groggy from the anesthesia. We were SO glad for that. And she came home just fine as well, not a drop of tylenol or anything. Tough kiddo huh!

After a day or two Mary Elizabeth swelled up a bit in the area, most people did not notice because it wasn’t any worse than it looked before, but it’s supposed to look better not the same, so it was swollen. And as always she is on steroids post-op, but this is the nature of her condition and what we are used to seeing. 7 days after surgery she saw Dr. Waner at the office and he removed her stitches, but her drain (that was put in at surgery) still remains. He did note the swelling and to take care of that and any scar tissue build up he will follow up with a steroid injection in 6 weeks. (September 19th she is set to go in the OR). She often gets a steroid injection 6-8 weeks post surgery and that has always helped so we were on board with that.

Right now we wait… wait for this drain to slow down and be ready to come out. At first we thought it was starting to slow down, then the drainage amount went a bit up, then back down and now up again. Unsure why, but either way we can’t wait til it calms down and comes out. Mary Elizabeth is eager herself. She cannot swim with it in and we have to tell her to be careful as she doesn’t want to have anything tug on it or whatever. The actual drain site has bled a little from tugging. So that isn’t really fun. And well, the risk of infection is always there. So we just can’t wait to see it go. Especially since it put a damper on the end of the summer for her. But we’re still trying to have as much fun as possible anyway.

So as you can see we have a few more trips to NYC in the near future…. and in addition to that….

Tomorrow we go down as well!! But not for a medical appointment, you see- Dr. Waner’s foundation contacted us to have Mary Elizabeth sent to a photographer to take pictures of her. If we agreed they’d do a photo shoot of her so they can use it for a calendar he may put out or any flyers/brochures etc he does in the future. We had no problem agreeing to that and we are looking forward to doing this.

Soon we’ll be getting ready for the kids to go back to school. Can’t believe the summer is coming to an end. Well, keep everything in prayer if you can and thanks for reading. We shall update soon!

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!!!!