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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! 🙂

Seems like with Mary Elizabeth’s condition, we experience quite the rollercoaster ride. And though she’s come so very far… we know it’s been quite the journey!!! Three steps ahead, Two steps back and so forth.

By far, the trach removal was one of our biggest highlights… so of course, you had to imagine that there was a chance it wouldn’t be completely smooth sailing from there on out right? We were hopeful… but nonethless we’ve hit a challenge. You see, ME’s breathing has been great since her trach was removed. Her trach hole was stitched closed and she did well with that too. Oxygen levels are and STILL remain well. For that reason, we are very blessed and relieved. However, at night – her breathing has not been how it should be. It seems as though her body still wants to breathe through her trach hole- you know, the one she doesn’t have. THAT would be the problem.
(I mean it’s great that she has good oxygen levels but she’s just working extra hard to have it!).

For 5 1/2 years Mary Elizabeth was breathing through this hole in her neck and her body just hasn’t adjusted correctly to that when she’s in a deep deep sleep. Her neck will “suck in” so to speak and her heart rate is a little elevated instead of “at rest” while sleeping as it should be. She is completely exhausted at this point. It has gotten worse because the past week she has been congested, so between the two – it just hasn’t been easy on her.

ME hasn’t napped since she was 2 years old. She’s always a ball of energy, the one that takes forever to fall asleep at night- a real night owl. This same little girl has been falling asleep at the dinner table. So yea, it’s a concern. And let’s not forget- mom and dad become exhausted when their daughter is. So… We contacted her team of doctors in NYC and we spoke with other moms online and did our own research.

ME needs a little help getting adjusted, and we have faith that it will all work out just fine, as she doesn’t even do this all night long, only a portion of the night. She will have a sleep study done soon. We are going for a consult in NYC on Thursday, February 24th to discuss and arrange it. While we don’t know truly what the outcome will be, other parents online that had similar stories had their children end up on a CPAP machine for a while and eventually got weened off of it. It’s a machine that is often used for sleep apnea patients but in this case it will retrain the body to breath through the correct path/passages.

So anyway, that’s that… we will be updating on when the sleep study is and then the results of the sleep study as we get them. In the meantime, as always- keep her in your prayers 🙂

It is a dream come true that Mary Elizabeth had her trach removed, but now it’s feeling all the more real with her trach hole closed! We are free of the suction, she can hang out with family that doesn’t know trach care, she can take a bath with a ton of water in it and lay down because… SHE HAS NO HOLE IN HER NECK! Woohooo.

Mary Elizabeth had her trach hole stitched closed on January 24th and was due to have the stitches removed on February 1st, however due to the horrible winter we are having here in NY, there was no way we could get down to our appt in NYC. We talked it over via email with her doctors and they said that it would be fine for her to have it done by the pediatrician. She had her stitches removed on Friday, February 4th.

I have to say her neck looks fabulous considering. She has a little scar there of course but in time that will heal nicely.

Saturday when she took a bath, she was a little reserved and nervous about being submerged in water, so we allowed her to take it slowly but told her it was up to her what she wanted to do.

Well today Sunday, she was laying in the water for a while and even put her head a little under and stuff. She’s loving it and being quite the little fishy. She can’t wait to go in a pool, and neither can we. We’ve all waited 5 1/2 years for it. So we’re gonna try and plan something for her, even if it is a trip to an indoor local pool – since waiting til the summer seems much too long!

Here are a couple pics of ME in action in the tub!

So today went a little different than anticipated…. but it still went well.

Mary Elizabeth was sick a week or two ago. That ended and then one day out of no where she threw up like 5 days after feeling better. She seemed and felt fine… so I thought maybe a super-fast stomach bug or something. Who knows.

Then this morning, the day she was due to go in the OR she gets up at 4:45am and throws up. Oh Lord I thought- we are not going to make it down there. But I realize it’s not throw up- it’s some brown old-ish blood and saliva mixed. That’s when the bell rang. I thought back to a week prior when I noticed some brown spots on her pillow case. This happens sometimes when the tiny vesicles under her tongue start growing again… meaning she’ll need lasering. (If you don’t remember her LM can cause these tiny vesicles or “bubbles” to grow in her mouth area from time to time, lasering does the trick and sometimes can last year(s) or sometimes less – it’s random). Well while I knew she’d need lasering soon, I realized she must be swallowing some of that blood and it sitting in her stomach makes her nauseous and thus she is prone to throwing up. Because in addition to the things mentioned, I also noticed a bit of brown discharge from her trach hole, so it was definitely getting back in her throat.

We left as planned, but I called her Dr. on the way down. (Dr. Waner’s surgical assistant Dr. O did the procedure this time). She agreed on continuing as planned and said she’d do some lasering while she was in there. She’d also scope her to be sure it was only in the front and not in the back of her tongue or in her airway. If it were, she’d wait to close the trach hole.

Well we got to the hospital late due to an accident on the highway we took down and then other rush hour traffic. That put us behind as they had to switch cases and put us in later. And the surgery ended up being a bit more involved. You see, we were just supposed to be there to get stitches and some baby teeth removed (we went to the dentist and she needed some of the teeth extracted so he set up to go into the OR and do that while she was under). Instead, we had that done, plus a scope of her airway and back of her throat and then lasering to the floor of mouth, inner lip area and base of tongue. So the surgery was a few hours instead of much, much less.

When I saw her in the recovery room, as always she was sleepy and slept long!!! She never wants to wake up, but I woke her up as I usually do. She seemed to do well. But it took a while to get her motivated to even leave! So we were there for a while.

Of course, the night wasn’t without hassle. They parking garage guys messed things up and that took a while, traffic on the way home was less than pleasant, and the pharmacy we went to (not our usual one since that was closed) took forever and then messed up the insurance stuff. So after leaving at 6:30am in the morning… we didn’t end up home until 8pm!!! We’re exhausted! Although…. you could only tell that Mommy was… because ME played some pretty active video games with daddy at home for a little bit before bed!

So as you can see- she really did well. The lasering went fine and she is used to having that done, doesn’t really call for any recuperation. She isn’t bothered by the teeth missing (they were pretty much half gone anyway) and she’s excited because her dentist actually called the tooth fairy to tell her he has the teeth and she should leave something under ME’s pillow tonight! Exciting!!! And she is very happy that her trach hole is closed.

She is now asleep and we are watching her oxygen levels which remain good! Thank the Lord!

She goes back in about a week to have the stitches removed. And then we’ll have a pretty clear neck!! YAY!! Thanks everyone for the prayers 🙂