Hi Hope you like the new layout. We worked hard on it (or Andy did).
WOW a lot has happened since 4/28/06 when she got her MRI (Last update to babyraia.com). Here’s a short-version re-cap…
May:
On the 20th of course, she celebrated her 1st birthday. Big bash at Orange County Park, we had a great time, and so did she. Our friends brought an air castle, so she got to do a lot of jumping and she was in her glory! Got lots of wonderful gifts too!
Earlier we had celebrated an almost 1 birthday with my father’s family from Long Island. We also enjoyed Mom’s first true Mother’s day! J We had appts and whatnot but all was well in May.
June:
Early-Mid June we got a call that they had an opening for surgery and asked if we wanted in. We snatched it and with only 2 days notice we were on our way for her chin surgery. She took a while to recuperate from this surgery, she had a drain in and she stopped walking for 1-2 weeks. But otherwise she showed no signs of pain or anything. We had a visit from my aunt from the state of Washington, we went to the Bronx Zoo… we did many fun things as well as celebrating Daddy’s birthday and Father’s Day. They took the drain out and after that her chin swelled up really bad. Although soon after it did start to bleed (when she fell and knicked the area the drain was in) and got a little better after the bleeding but needed assistance.
July:
Mary Elizabeth popped her first teeth. She didn’t just go with one,…. 4 came out all around the same time. Then 2 more shortly after and 2 more shortly after that. Pretty much all in the same month! WOW! We went on vacation and had a glorious time with the family. We went to Virgina Beach, also to Busch Gardens and a Botanical Garden and a local zoo. It was loads of fun. Though she didn’t step a foot in the water (not taking any chances with the trach) she had a great time. We came back and she had her steroid injection and that did wonders for her chin. Towards the end of the month, she started using the passy muir valve all the time and her first baby-word was NaNaNaNa… hehe. Very cute and rewarding.
August:
NaNaNaNa was followed up with DaDa! Yay! We have a little chatter box. We had her g-tube changed to a smaller one in the middle of the month. The old one she had in for a few months would leak so bad, and she wasn’t gaining much weight at all! (No wonder – all her food was leaking out!). That helped things and it stopped leaking a lot. She started playing with dolls more, giving them hugs, walking them in a baby carriage, feeding them and giving them drinks too. Oh and her favorite show (besides Dora the Explorer) became The Wonder Pets! And she started to really get into dancing to music.
September:
We went to a friend’s wedding. Mary Elizabeth looked adorable in her gold dress with pink flowers, in an oriental style. We danced the night away, and ate the night away too (especially Mary Elizabeth!). She was starting to gain some more weight and that was good! We celebrated Uncle David’s birthday, grandpa had a bad bought of Vertigo which now Thank God is not an issue. And then she had yet another surgery. Her surgery was on the 13th and she had some lasering to her tongue & airway, some granulation tissue that developed in her airway was removed and she also had another tongue reduction to help with the thickness of it. All went well, her airway is looking better than ever and it helped with her speech and eating so it seemed. She started saying “MaMa†which I loved! Also we signed her back up for the music class she goes to – a mommy & me sorta thing that she enjoys very much.
October:
Had lots of fun picking pumpkins, riding horses and just hanging out on the hay at the local farms. Harvest Season was here and we were enjoying it. We also celebrated her friend Connor’s 1st birthday. She started doing some baby sign language which they teach all kinds of kids these days. It’s the new trend. But it’s very helpful for Mary Elizabeth. She started with “More†and followed up with “Pleaseâ€, “Thank Youâ€, “Babyâ€, “Ballâ€, “Juice†and “Eat†rather quickly. Such a smartie pants! At this point, somewhere along the lines, she learned to climb on everything, get into even more things and also throw a little temper tantrum if you tell her no. But all in all she remains very pleasant, happy and friendly J. Though we don’t truly celebrate Halloween, we do some dress up and harvest season fun with pumpkins. She was a Bumble Bee and looked very adorable. On the 31st however, she had surgery. This one was a biggie. To remove the cysts from the right side of her face by her parotid gland. The risk was nerve damage, potentially paralyzing part of her face. The recuperation was to be really hard….
The day of the surgery, I told this story:
Right before surgery (like minutes) we were in the room where we get her ready, we were by ourselves (Andy, Mary Elizabeth and I) and there wasn’t much in that room. She started looking up towards the ceiling and waving and smiling, then even nodding, and waving again, towards one side, then towards another. Nothing was up there at all.
We feel angels were watching over her for the surgery. 🙂
November: (ALL CAUGHT UP)
Well it’s only half way through…. but we saw rather quickly that the nerves were totally fine and gave Glory to God for that. She also has been recuperating MUCH better than expected. She was back to herself within 36 hours, running, climbing and having loads of fun. We thank everyone for the prayers because she was definitely protected through that surgery. She got her stitches taken out a week after the surgery. But they left the drain in because it was still draining a lot. It started to lessen a bit. However, then her drain came out and there was a bit of swelling after it came out but otherwise it’s ok. We will see what the Dr has to say about that.
For now, we promise now that the new site is up to keep it updated. Sorry for being Missing in Action for so long
God Bless-
Jessica, Andy & Mary Elizabeth
