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...until Mary Elizabeth gets her gtube taken out!!!!!

We go to Westchester bright and EARLY Friday morning, August 21st for her gtube removal!

On August 11th we went to her Dr. who handles her gtube and whatnot- and he reviewed the paperwork which said that she is OK to get her gtube out. He discussed with us that he would much prefer to remove it without doing it surgically and stitching it. He said 75% of patients with gtubes have the hole close and it heals on it’s own. We are praying she is one of them.

What he is going to do is take the tube out and cauterize the area as to help it to heal and close correctly. Then he will place a dressing over the area to help with leaking issues. This is a major dressing which will stretch over the belly and we should not let it be emerged in water as to help keep it on. So baths will have to be sponge baths with some hair washing in the sink or something like that for about 2 weeks. As for pools, she doesn’t go in deep ones anyway because of the trach and she has been loving sprinklers anyway which the Dr said is just fine.
The dr will also give us extra dressings in case it should come off or we need to cover it longer than 2 weeks. The leaking should subside as the hole closes, which again we are praying it does entirely on it’s own.

Keep her in your thoughts and prayers and join us in the joy of putting the feeding tube in our past!!!!
We will keep you posted as always 🙂

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).