Tuesday, September 15, 2009

Catching Up

Alyssa has been changing leaps and bounds in our eyes. Lately I've been so focused on the sad and difficult part of T18. It is time to catch up on the things that bring joy and encouragement in this journey. We are so thankful that Alyssa is enjoying being apart of our family as much (we hope) as we enjoy her.

The bright spots in our day come when she does her dastardly dog laugh (ya know~the raspy hehehehe) when tickled or if she thinks she's going to be. Yes she is anticipating the actions of others, when lying on her back she'll pull her right leg in and crosses her arms over her chest to protect herself from prying fingers, all the while smiling a wide open smile laughing. At night when the house is still, she'll babble and coo, we've had many late night conversations. I love staying up just to hear the sounds I was told would not come. Alyssa loves to play with her toy bar, batting, holding, trying to suck on the hanging toys. She sits/lays in various positions to access the toys to encourage skill development.

According to Parenting.com The 9 major physical milestones are :

  • Smiling (8 weeks): Alyssa was on target with this. She surprised her geneticist, when flashing her a smile at an appointment.Just to confirm it was a social smile and not an "accident" Alyssa did it several times in response to Dr. S.
  • Rolling over (2 or 3 months) Flipping from back to front often takes until around 5 months because it requires more coordination and strength. Alyssa began rolling to one side at about 4 months and to both sides by 7 months. Her roll to the left is stronger. She is not flipping back to from yet. She requires guidance to get a full roll, this is just the placement of her arm so it doesn't get "stuck" under her body. She is still learning how to tuck properly and not to arch incorrectly. She does love to roll, we work on it often for this reason.
  • Grabbing (3 or 4 months) Alyssa began grabbing about 6 months. However wasn't truly consistent and focused until about 8 months. Again this is a skills she continues to develop as she favors one hand/side over the other.
  • Hugging (5 months) Alyssa was a snuggler from the day she was born, but hugging with intent...hmmm not yet. Due to her low tone it was hard to hold her upright facing my body without support. So she hugged me in this position whether she wanted to or not. In the last 2 months she has developed enough head control that I can hold her in this position without additional support, so maybe I'll get a natural hug real soon.
  • Playing peekaboo (6 months) Alyssa loves peak-a-boo. It has been such a good game for her. She anticipates the cause and effect actions of the game. It'll be more fun for her as she develops skills to take the game to the next level( sounds like I'm talking pro ball).
  • Sitting up (8 months) Alyssa is beginning to sit unsupported. She can do so briefly intervals of 45-50 seconds between repositioning. In other words she sits, she collapses, is helped to gain good positioning and repeats until tired. This is wonderful to see, as once again we were told this or much of the other skills she has gained were not to be expected.

Alyssa's physical skill development is in the range of a 4-7 month old~very scattered. Some of this is due to muscle weakness, it is difficult for her work against gravity. When things are modified she is able to do more in one position than in another. We've noticed that with weight gain, there is skill gain. As we address her vision issues positive changes occur as well.

Alyssa's social development my guess is around 7 months. Her speech development is delayed which may be related to hearing issues. We'll see how this turns out as we address her hearing. Alyssa loves to watch people, smiles, mimics, and likes bright colors. I have been playing her a mix CD of Classical music and baby babbling/cooing ( we made it ourselves). The hope: to inspire language. Who knows the true benefit, but she does enjoy listening to it and will babble back to her recorded "friend". In the last few days she has begun to babble more to people outside of our household, it is nice to see her connecting to the world around her.

Alyssa receives physical therapy and occupational therapy each 4 times a month. She also has specialized instruction (learns how to play) 2 times a month . We would like to add speech therapy. Crawling (6 to 10 months) Pulling up (8 months) Walking (10 to 18 months) Alyssa at 14 months is not doing any of the above now..but ya never know~ it could happen someday. Parenting.com indicates that there is a 2 months window in either direction for skill development. If the child is beyond that 2 month period, she would be considered delayed. So yes, Alyssa is delayed. I do see her making changes/gains everyday and that is what matters most to us. Alyssa is 14 months old and delayed as much as a year behind her true age. Yet she is happy, interactive and much loved. Not bad in our opinion.

Why then do we do what we do?
Easy because we love her and like anyone of our other kids we want her to aspire to her full potential ~ whatever that maybe. I am confident that we will know when enough is enough. Alyssa has a fiery personality and I have no doubt that she won't hesitate to let us know her limits.


  1. It's great to hear how much Alyssa is accomplishing despite her delays. We record Zane's voice for him and play it back; he loves it. And, not knowing where his hearing truly is, he still seems to enjoy music. I think you're doing a terrific job. Thank you for reminding me of the celebrations with our little ones, too.

  2. I'm so glad you shared this information! It's wonderful to see Alyssa's accomplishments. How exciting!

  3. Hi, I'm 21 weeks pregnant and my baby girl was just diagnosed with trisomy 18 acrossed all 15 cells that they tested. I really enjoyed reading your blog and your caringbridge journal as well. I hope our little Gracie can make it this far, we have even more hope after seeing Alyssa. Thanks for putting your story out for everyone to see:) Monica