The pediatrician has given us the GO AHEAD to get the gtube removed and wrote a note for us to bring. Her dr appt with the pediatric surgeon is August 11^th. From there, we will give him the note from her pediatrician and discuss how to go about it.

Praise God!!! As mentioned time and time again, this area has always caused her problems/pain, it leaks and the area is always pretty red and sore. This is a great step forward for her!!!! We are soooo ready to say goodbye to that gtube!

…… also, in other news – her MRI/Cat Scan appt was changed from Aug 19th to Aug 4th. So keep that in prayer Thanks, as always!

It’s been 6 or so weeks since Mary Elizabeth’s last sclerotherapy/injection surgery. So today we had a follow up appointment with her surgeon- Dr. B.

Last time we had a follow up appointment it went faster than expected, so I guess I was fooling myself that it would go fast again (even though it always took long in the past). And usually it’s quite frustrating being in NYC all day. But, I felt really positive after this NYC visit.

After looking at her, examining her and looking at photos etc. Dr. B felt that a lot of what she has left is bone and some fatty tissues and scar tissues. Therefore after about 5 rounds of sclerotherapy… she’s done with it!!!

This is good news because we are ready to move forward with the next steps. And going forward is always a GOOD thing. She’s come a long way with the sclerotherapy and we are so blessed that it has been pretty successful thus far.

So while we were there, Dr. B called Dr. Waner up to his office from the hospital and Dr. Waner talked to him a bit and they both agreed that she was done with the injections and then Dr. Waner on a whim said we should come to his office and discuss the next steps. The next steps are to have a CT Scan & MRI done with a model of her jaw, and then a tonsilectomy along with a scope of her airway.

CT Scan & MRI are going to be done to take a look at her more closely in preparation for a future jaw surgery. She really needs jaw work done as her jaw is overgrown. However the timing of this needs to be accurate as to not affect her permenant-adult teeth. So they will look into this more and talk to the team of doctors that will be doing it in the future. The tentative scheduling for this CT Scan and MRI will be on August 19th. They are hoping to do it all in one day so they don’t have to put her under anesthesia twice.

The tonsilectomy and scoping of her airway will most likely be done on October 12th. (They may squeeze us in earlier if they have an opening). Her tonsils are a bit large – assuming from her condition, and they are going to remove them as to increase the amount of airway she has. They will scope her airway to see how things are and to see if anything further needs to be done. This will be a step forward into becoming decannulated (having the trach removed). No, it won’t be overnight but it’s in the foreseeable future and being any amount of steps closer to it, is a very good feeling. So hopefully things will continue to move forward in that direction. Keep that in your prayers!

We also spoke about her gtube. The area is always sore and red, we’ve battled with it for 3 1/2 yrs now and it leaks quite a bit too. She eats so well and there really isn’t a true need for it. I questioned Dr. Waner if she needed it for surgeries and he said she did not. As far as her pediatricians are concerned – they want to see that she is gaining weight while off of the gtube. So Andy & I have been doing our own little test and not feeding her by gtube at night anymore since right before we went on vacation (end of June). So far by our scales she hasn’t lost any weight- but she gained a pound. We’ll keep this up and bring her to the pediatrician soon to discuss with them possible removal eventually. Again perhaps not right away, but maybe in the foreseeable future (just a bit closer than decannulation). So think piggy thoughts for Mary Elizabeth, that she’ll eat and drink lots and keep it in your prayers as well.

After those things are done we’ll talk more about what is next and of course she’ll have other surgeries to clean things up and whatnot. But we won’t know what is next until those things are done.

So all in all it was a good appointment, after we saw Dr. Waner we had to walk back to the hospital and make the appts for the CT Scan & MRI and well it was a long day…. Mary Elizabeth was great with it all, so I’m proud of my little girl who is getting oh – so – big.

Well that’s it for the update. I’ll be sure to note any changes or updates as we continue.

Mary Elizabeth did awesome with the last surgery. Only 4-5 hrs after surgery (when she woke up) she was up and chatting, busy, playing, eating, smiling etc. What a good thing to see. She had no pain meds what-so-ever and they did what they needed to do. They did some areas to her left side (which is the ‘better’ side) because they wanted to give the right side a break and there was still some to do on the Left side. They also injected some areas under and around her chin. 

The first day of surgery she looked and felt fabulous as you can see by this picture. The day after surgery she did swell up a bit as we usually see. But not quite as bad at all. We definitely have seen worse, and now just over a week later she looks very good. I don’t think unless you really look you can tell all that much that she’s swollen at this point. So yay for that!!!

So here’s a bit of info as to why she had an easy time this time. They started her injections (4 times ago) with using an agent to inject we’ll call "Agent A" this agent they have seen work well, but it causes a LOT of swelling and some burning feeling/pain. So her first sclero was the worst she ever had and that is why. They started leaning towards another agent- we’ll call "Agent B", and because of that- her 2nd and 3rd sclerotherapies had a mix of both agents, so they were not the greatest, but not as bad as the first. However, she had good results with all of these. This time they went strictly with "Agent B" since that seems to still produce good results without the pain and excessive swelling. All of the sclerosing agents will cause swelling though.

So I’m praying for continued good results and that we’ll be able to stick with "Agent B" since it’s easier on her.

We go back in about 6 weeks to discuss the next step. They are thinking they may do a few more of these sclerotherapy procedures. They are doing all they can with injections as it is less invasive than making an incision of course.

Keep her in your prayers and as always we will keep you posted.

Wow… been a while since we updated. Sorry for that. I can’t say why we didn’t update in April… but May so far has been the usual fun, yet extremely busy month!

Well on Wednesday, May 20th- our little princess, Mary Elizabeth turned FOUR years old, yep she’s 4!!! We cannot believe how time has flown. She had a great birthday party with all of her friends at a local park with the Disney Princess theme… and yes, she was a true princess herself. It was so much fun!

She is doing great in school- learning lots and loving the socialization. She is doing better with her behavior since we are out of the terrible 2′s and defiant 3′s. But she remains to have that independant and stubborn nature so yes, our little girl can be fresh at times!! She does great with one-on-one things and loves to play games and cards with mom & dad. She, being the girly girl she is- LOVES doing nails together, pretending to do make-up & hair too. She is very into dressing up and pretending, loves pocket books and shoes… she’s just adorable!
ME has tons of fun with her little brother and loves being "mommy" to him. She can be bossy though but Drew handles it pretty well.

We were told recently that if she drinks more milk she can get her gtube out. She eats well and has no problem drinking- I just think she wasn’t as used to drinking as much since she never had a bottle, so she is lazy or forgetful about it. So keep in your prayers that she DRINKS UP so we can get there. We don’t want to remove the gtube and then have her lose weight, she’s a peanut and a little skinny minnie as it is. Her dr appt was today and she’s 28.5 lbs and 37 inches. Growing fine on her own little curve she has been. We just need a little more weight on her!

Drew just turned 18 months old today- yep he’s a year and a half old!! He’s QUITE a handful. Active as can be, a true BOY, climbing and exploring and getting into all sorts of stuff. He laughs when you tell him "NO" – even if you are very stern and serious about it! But he’s fun and adorable too, very affectionate and cuddly. He likes to play with his toys and is still very inquisitive.
Drew just loves his big sister and when they aren’t getting into trouble together there’s a lot of fun and laughter which just really puts the joy in the household.
He is learning lots and saying lots. He says more words than I can count. You can tell he really wants to talk, he’ll babble and make arm/hand gestures while he tells you a whole story. So once he starts talking in sentences, I don’t think he’ll ever stop. At this point he’s putting a couple words together here and there which is right where he should be. Most of the time he’s saying "Get Down" to himself – he says it before mommy can!!!
Andrew loves to be outside, and will often be upset when you take him in. He loves his little power wheels and playing in the sandbox with his sister (or throwing sand on top of his head).
Anyway, he too had an appointment/checkup this week and he is now 25 lbs 3oz and 30.9 inches tall. Growing nicely- as we’d expect, since the boy can eat!!! (Especially if it’s pasta of any sort!)

So all in all we are doing well, have our hands full but are having lots of fun. The kids are enjoying the beautiful weather and being outside. We have some nice summer plans set up and are looking forward to that. 

On another note, Mary Elizabeth’s surgery it is this Tuesday May 26th and she is having Sclerotherapy done again. This as you know can be a biggie with swelling issues etc. So keep her in your prayers and of course the Doctor as well who is performing it (Dr. Bernstein).

Lots of Dr Appts were going on here….

Andy: He ended up recently with a touch of the flu (along with ME who recovered just fine). His caused a sinus infection and double ear infection. His ear infections got so bad that his ear drums ruptured – BOTH of them. He ended up one night in the ER with his ears bleeding and found this out. Which got him a ticket to see an ENT dr. Since then he is doing and feeling a lot better, his ears are just gonna take a while. So if you see him and he doesnt appear to realize you are talking or hear what you are saying, it’s because of his hearing being affected for a while (Dr says at least a month, or two). So we’re all repeating ourselves 2-3 times around here for now Otherwise Daddy is doing well and busy with work and musical endeavors.

Jessica: Not as big of a deal (well most likely not). But ME found a ‘buggy’ on mommy’s back. And sure enough it was a tick. (Which freaked mommy out big time!!) So off to the dr with that and they’ll do bloodwork to be sure nothing is up. I’m sure its not but I didn’t save the tick- oops. All in all Mommy is fine and doing well, other than being hectic and running around all over the place.

Drew: He went for his 6 month check up with the eye dr and his "lazy eye" which was hardly noticeable before (only noticed when he woke up from a nap)…. is even less noticeable now. I rarely see it at all. The dr said it improved and he barely can even call it lazy eye but it’s there a tad so we’ll see him every 6 months just to check it. Drew is also doing well and being absolutely adorable as ever. He seems to be learning a new word everyday and is babbling a lot! So cute!

Now for the biggie….

Mary Elizabeth: she just saw her radiologist in NYC this afternoon. I cannot express how fond I am of this man and amazed at his knowledge. It helps how great he is with Mary Elizabeth too. Anyway, Dr. B says she’s getting a lot of good results from the Sclerotherapy and wants to continue with it. He scheduled us for May 26th for her next one. He wants to tackle the floor of mouth area, a little chin and cheek perhaps. He decides for sure as he is doing it with the ultrasounds. He put a picture up of her before her first sclero, and one recent one we sent him. Amazing to see how far we’ve come. These are different pictures and not the exact same angles and whatnot but the first one is from a few days before her first sclero (back in June of ’07) and the other one is from this past St Patrick’s Day. While it is 2 yrs apart that is because we have had to space the sclerotherapys out a bit. And we had a huge break back when I was pregnant and Drew was first born.


Now sure she’s grown in 2 yrs. But the difference in her cheeks and the sides of her face etc is great. She has definition around her chin area, more around her mouh and you notice her nose more because its not surrounded with cysts.
While it does seem that her chin is more pronounced or "longer" that’s because her face isn’t as wide as it used to be so we notice it more… and she has grown. The future jaw surgery will help push her chin back instead of outward. Also apparantly she has a bit of scar tissue in there they will have to remove.
We are glad that she has had results from this and are looking forward to seeing more.

Aside from that she has a small dental procedure in the OR on April 2nd. So we pray that goes well too.
And all in all she is doing quite well. We are amazed that she is going to be 4 yrs old soon. She is cracking us up left and right with her witty comments and all-knowing ways. She’s such a cute little smarty pants!

Hope everyone had a good day!

Sorry everyone. Been a while since the surgery (10 days to be exact) and I meant to post an update sooner but life happened. To our surprise she did extremely well with recovery so we haven’t really been house-ridden or have had any downtime!

Soooo…. Surgery went well. They did a lot of injections to the right side of her face (cheek area etc) and to her chin. With the MRI they see a remarkable difference and wanted to try to get the right side to be more symmetrical (the right was always worse and where the malformation started). They injected the areas that they could. This time avoided the floor of her mouth – which I think helped in recooperation since eating and speech weren’t AS affected. (In the past her tongue would swell and she couldn’t eat or speak which made her miserable- this was not the case this time).

From the DAY OF SURGERY (Monday Feb 9th) she was in good spirits. First of all she was a very good girl about going in. Did whine a little and tell us she didn’t want to do it, but asked a lot of questions and we explained and she did not have any tantrums about  it. She was very brave. Then as she came out of surgery (4 hrs later)- she was very sleepy and slept most of the day. In the evening she was her witty little charming self- talking to us a bit and laughing. It was so good to see her smile THAT SOON after surgery.
She did have a bit of discomfort because this was the first time they used a foley catheter to collect her urine. And when it came out she was very upset. Also had a bit of discomfort the next time she went to the bathroom. After that though she was doing pretty good.

The worst of her swelling was on Tuesday and it was pretty swollen the first few days after that. Her right side was pretty far out and her bottom lip looked as if someone punched her pretty bad. That gave her some difficulty with liquids but not enough to bring her down of course. She was running about the house and making lots of messes just as she normally does. But the swelling started to come down quickly. As I speak, she is still swollen but it’s definitely not the worst we’ve seen and she seems very comfortable so I’m glad for that.

We are very thankful that she has been in good spirits and that the swelling hasn’t been too uncomfortable for her. We are praying and hoping for good results from this and are being patient as we know it takes time.

As always keep her in your prayers and we will be sure to keep you informed

Her Surgery date has changed!!!!

Tuesday, February 10th was the original date for the sclerotherapy/injection surgery. It is now changed to Monday, February 9th.

The reason why they changed it is because they want an updated MRI and the only time they could get her in for the MRI in the hospital was on Monday. Instead of making us go to the city twice and put her under anesthesia 2 days in a row… they reorganized things to make it happen all in one day. Sooooo….. change your calendars and say your prayers.

In addition, pray that God will put a little bubble right around Mary Elizabeth. Mommy is sick with a head cold (and daddy a little too now). So far she seems fine. They said surgery will be good to go as long as she doesn’t get a fever or an abundance of green mucous/secretions. So we hope she can stay healthy until then… and of course we pray for a successful surgery with no complications and perhaps an easier time with recooperation than she’s had in the past.

We will of course, post an update as soon as we have more information.

Mary Elizabeth- After her strep and infection in her cysts/chin area… she was itching from the swelling in her chin. She gave herself some scratches, which she picked at. Then she was scabbing up. So her chin was a mess for a bit. It is better, but still has a big scab underneath in one area. And she of course is better and well.
She loves school and so do we- especially in the winter. It’s hard… she misses her swingset and going to the park! Ever since she was a baby and had Physical Therapy for that short while, they said she was advanced in her fine motor skills. Well her current teachers and speech therapists of today tend to agree that she still is. She is cutting and pasting like a 5-6 year old. She’s very crafty and creative. Lately her favorite thing to do is paint mommy’s nails (both fingers and toes). I feared my 3 1/2 yr old doing this- but she actually did a decent job!!
We’re trying to visit, have play dates and do as much as we can as we have her next surgery coming up on February 10th. A reminder that this is the sclerotherapy/injections again. So we know that means swelling and discomfort for her. Please keep her in your prayers as always.

 Drew- Gosh he’s 14 months already. He’s getting big, fast and learning lots of tricks from his big sister. He’s climbing on everything and being totally boyish! He is of course a big mush and a sweetheart though. He keeps chattering away and though a lot of it is still babble – we hear him saying lots of words. Such as: Hi, Bye, Mama, Dada, Teeth, Row Row (as in row row your boat), Trees, Shoes etc. He even said Shiva the other day (Uncle David’s doggie’s name). He tries to say "grandma" and I realize he is trying to say Mary Elizabeth which is REALLY HARD, and comes out like "ShaSha" – as if he’s trying to say the Elizabeth part the most. Hard to explain of course.
He did ok after the strep, and all is well expect for some teething here and there. He’s only got 2 teeth right now, I think we’re looking at a 3rd soon though.
He goes for his 15 month check up next month. I know he’s doing rather well though. And in March he goes for his follow up eye exam for the lazy eye (which as mentioned we only see after he wakes up from naps). Well, I have to say that I am seeing it a whole lot less- if at all. So I dunno if there was improvement or what. I guess we shall see.

Both kids are doing good with eating. They will eat a variety of things, but if you really want them to eat a lot- feed them one of the following: pasta/meatballs/chicken nuggets/macaroni & cheese/hot dogs/peas. Well at least we have the peas in there. Yea they’ll actually eat their peas. Especially when I put it in the macaroni & cheese which is my trick for getting them to eat more greens!

All in all they are great, they love eachother so much and have a lot of fun- they also drive us crazy but that’s toddler-hood for ya