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Things are going well here at the Raia household despite the nasty colds we caught that everyone in NY seems to have had (well almost). Baby Andrew seemed to escape it though so that’s good, since he’s young and all.

Mary Elizabeth has become quite the artist. Sure she’s been drawing with a pen/pencil/crayon since she was 1 years old, but she really has been very involved in her coloring skills in the past 6 months. And loves to try to copy what you are drawing. She went from doing big round circles, to little circles, attempts and successfully can draw triangles at times, can draw crosses too (and has drawn a nice cross with a black sharpie on mommy & daddy’s bed sheets- whoops!)… but now she even draws little faces.

You may have to tilt your head slightly to get the idea… otherwise you might see 8’s and 7’s- but its really two round circles for the eyes, a circle nose and a squiggle for the mouth! We are very proud of our smart little girl!

 Recently, we have done a bit of shopping. So their spring & summer wardrobe is turning up quite beautiful thanks to some good Gymboree sales! Grandmas have helped a bit there too- with no complaints either! haha. They will be needed anyway as we realize we have a lot of Events coming in the Spring. Anyway, in addition to the clothes we had Mary Elizabeth’s wooden letters repainted to match her room since we didn’t think Drew would want the name MARY hanging over his crib!

It looks adorable with her Hello Kitty Themed room. In addition we thought we’d get smaller, boyish letter’s for Drew, so that means no ribbon. We haven’t hung them yet but I layed them against the wall – resting on the changing table to share for now, a bit tilted but you get the idea…

We also have some new VIDEOS we put up- well they aren’t really new to us, we took those video clips in December & January but hey better late then never. Drew has already changed and learned so much more since then so we’ll have to take some more and put them up quicker!

Well that’s about all for now, we’re gearing up and hoping to stay healthy for the upcoming surgery on March 11th. We have decided to go with the original drug used in the last sclerotherapy/injection round. Reason being, the other drug has been used before and a lot- but overall not as much as we’d like to feel safe about what risks are involved. There was success with the last round, we are praying for even more success and also less swelling this time.

Don’t forget to leave a comment (if you have time) to let us know you were here and reading 😉

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Happy Valentine’s Day to all of you, from our two little love bugs!

Whoops- I forgot that we purchased tickets for Mary Elizabeth to see Sesame Street live on March 1st. Certainly couldn’t have gone 3 days after surgery. Since we already spent the money on tickets, and this was something for her to ENJOY, I didn’t want to take that away from her.

I called the Dr’s office and they were very good about it and changed the date to Tuesday, March 11th 

This works out for us well but we had the idea of doing Andrew’s Christening on March 30th, that of course would be too close to her big surgery so we will be doing it in April instead. Details to come on that later once we work it out with our Pastor.  

Our appointment down in NYC this evening went well. They did an ultrasound on her face (which she sat very nicely for) and went over things with us. The last time they did the sclerotherapy (injections) surgery they used a different agent to inject into the cysts. They were planning on doing that when we were trying to arrange this surgery not too long ago. 

This time around the Dr feels she’d like to use a different sclerosing agent. The reasons for this is because she has seen that many have had good results from this one as well, and also that she had hoped for a better response with the other one she used last time. Though ME did seem to have decent results last time, she is looking for something that will work better.

We will be researching this as well, but we have heard of the substance through other parents with children that have this condition as well. Prayers are that this change in the surgery is maybe what it was postponed for all along. We shall see.

Nonetheless no matter which we decide to go with (the original agent that she was injected with or this other one) she will have surgery on Wednesday, February 27th. Please keep her in your prayers. 🙂

So with Andrew being born, and the holidays- there was a bit of quiet time with appointments… not to say it was quiet time for us (visiting, running around getting things done etc) but still- nothing going on with Mary Elizabeth’s surgeries or anything so it was quiet in that respect.

Mid-January brought on some appointments and lots of phone calls to make some for the future too.

About 2 weeks ago we had her preschool evaluation. Basically they did some testing on her cognitive skills and abilities. Since she’s enrolled in the Early Intervention program and receives services (just speech) they had to give the district a recommendation on whether she’d need special education. Of course, we are doubting that and it was apparent after her testing they agreed because they said what we already know…
Mary Elizabeth is very smart, right on target and the only delay is with her speech – which is due only to her physical inability, and not cognitive as she does understand language.
Still they aren’t the deciding factor- just give the recommendation when we go in for a meeting to discuss her case further.

I have to say, and those around her often will agree- her speech has come very far in the past 6 months or so. She went from merely saying ma and da to saying pretty much everything- granted you may not understand it all- she still says it or tries to. Some words are very clear though.
Before- she was doing only one syllable words; Now she’s doing more complex words and putting words together and speaking sometimes in very short sentences (ie: "no throw my mouse"- as she had a little toy mouse that someone threw and she decided to reprimand them!). She’ll also be found having a whole conversation while playing pretend with a phone, but she talks so fast and does a lot of jibber jabber that we can only catch a few words of what she’s really saying.

Anyway, the preschool stuff is not over because we will then have a meeting soon (as mentioned) to discuss her medical needs and everything of concern when she starts preschool (in September). Our hopes and prayers are that she can attend the preschool that we want her to go to. It is at our church and they have an excellent program, excellent people running it and ME will be surrounded by lovely children – some in which she may already know. So more appointments to come on that.

We also found out in order to schedule her next surgery (sclerotherapy/injections) they would like to see her in the office to probably do an ultrasound on her face, discuss the agent they will use to inject the site and just evaluate/look at her. We are going to the city Monday after work so by Monday night we should have a surgery date.

Then we had to schedule her ENT (ear, nose, throat) dr check up as well so that is coming up, but is just a check up as she gets them a few times a year since she has a trach ( which may be a little less often than some trach kids but that is due to the fact that she has so many specialists always checking on her anyway).

We’ll be updating again once we have a surgery date. Keep Mary Elizabeth in your prayers as always 🙂