I HAVE BEEN MIA

Dear All:

It has been two months since my last post!!! Can't believe how fast time is moving. There have been so many events happening in our family, some good, some not so good!!

Let me back track, the first week since we came back, Maya had to be hospitalized, we where at the children's hospital for almost a week. The doctors were concerned because Maya was very malnourished and also because of a dimple they found at the bottom of her spine, and last, because of her port wine stain (birth mark) They wanted to make sure she was ok. Well, we went in on a Friday and we were discharged the following Thursday. Things got a little scary for a little while with so much testing going on and the not knowing what the outcome would be. Thanks to God, after doing about 50 different tests (at least) we were able to have a sight of relief. Maya does have medical issues going on, and I pray to God that with love and care she will surpass them. Right know, we are concentrating on her developmental delays. When we got her at exactly 21 months she would not walk, she was very weak, but you should see her now, she now walks around the house non-stop. She is full of energy. She feels "FREE" Free to run around, scream, and play all she wants. She has become a great fan of "Dora the Explore" She loves the songs. Sometime we listen to her mumble the songs.

We did have the evaluation, as I had mentioned it before with the Early Steps Program. The visit went very well. Maya was fully evaluated. As we had thought, she is behind in most of the developmental areas. Unfortunately, at the baby house where she was, she was being kept with babies younger than her, and kinds tend to imitate what they see and do. Well, that's one of the things that happened to her. Since she was surrounded by 9 - 15 months old babies, she stayed as a small baby in terms of how she talks, eats, moves and acts around other people.
We were informed that Maya is in great need of Physical therapy, Occupational therapy, Speech and swallow therapy.

One of the greatest challenges that we have encountered with Maya are that she does not know how to chew. She only swallows. We try every day to show her to chew, but we have not been very successful at it. We feed her a combination of home cooked meals and Gerber baby food, but for some reason we have to battle with her every time it's feeding time. Most of the time she throws up. Sometimes its a little bit, sometimes is the whole meal. You have no idea of what my Mom, Mauri and I have to endure every time we sit down to feed her. By what we have observed, Maya feels like she is gagging and that's when she throws up on us. There have times I that I end up crying along with Maya. My cry comes out of desperation, frustration and worry. I worry for my child. I worry that if she is not eating well, she won't be able to gain weight. We have been going to her Pediatrician on a weekly basis because there are so many things we are concerned about. We even had to change pediatricians because the first one she had was not what Maya needs. Don't take me wrong, she is good, but with the type of challenges that Maya has, she needs to dr. who is more proactive to accommodate medical Maya's needs. In the meantime, we are awaiting for several appointments at the children's hospital. We have 2 coming up, one for a video fluoroscopy, where they are going to watch her eat and then they will insert a camera to see if she has some type of blockage in the trachea. Then, we have another appointment with a pediatric gastrointestinal doctor, to check for esophageal distress. Well, that's all the time I have for know. I will try to post more later on. Take care everyone.....