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

Our little baby Andrew is 2 months old today! He is quite the handsome boy and growing fast! We measured him and weighed him at home today and he was…

 

 

11 lbs 11 oz and 21.5 inches long.
(Of course we’ll double check that official measurement at the pediatrician on Thursday because last time I was slightly off and he was .25 inches longer than I realized).

He’s doing really well with eating and we’ve given him a bottle with my milk and he’s done well transitioning back and forth. Also takes a pacifier to soothe himself. Other ways he’s soothed is by movement. Whether it’s in our arms being rocked, swinging in his swing, or going for a ride in the car- little Andrew likes to keep moving and often falls asleep that way. Once he is fully asleep the motion can stop and he’ll stay sleeping.

So given that happens- he sleeps very well thus far. He does have some fussy moments but I’m pleased to say it’s pretty much the same times of day every day and it’s not in the middle of the night. Otherwise I might be a walking zombie because with a 2 1/2 year old there is no such thing as napping mid-day.

He coos when you talk to him, he smiles back at you, he loves to look around at toys, things with nice bold patterns, he’s got great head control for his age and lifts it well during tummy time, he recently noticed his hands and is starting to swing them around a bit more, he did bat at a few toys but I’m not sure it was on purpose or not. He loves to be held… a bit more needy then his big sister was with that but he’s just a cuddle bug. He’s a bit mushy and loving – as he loves when you kiss him and he seems to try to kiss back. He likes music and to be sung to and he definitely likes to have people around him and hear all of their voices. He also seems to particularly enjoy his big sister – but who couldn’t love her!
And lately, it’s quite funny but he loves when daddy pats little drum beats on his chest!

And I know this is quite delayed but I was never able to share the pregnancy photos a friend had taken for us because they were done 6 days before he was born and we didn’t see them until he was over a month old. So if you feel like checking them out click the link:

Pregnancy/Family Photos 

Well that’s about all for the update now… I hope to be able to write Mary Elizabeth’s update soon so stay tuned for preschool talk and surgery dates!

Well we’re winding down from a blessed Holiday season. And wow was it hectic, but in a very fun way of course. We hope that all of you had a wonderful Christmas & that you have a happy & healthy New Year too.

Not too much to report right now. Working on those December photos to show off, but in the meantime here are our little greetings from Christmas Eve & New Year’s Eve.