Tuesday, March 31, 2009
Posted by Alicia at 6:55:00 AM
Sunday, March 29, 2009
March 29, 2007 was my original due date for Marissa. I had learned around 31 weeks that I would not make it to my due date because she was in distress and would need to be born a little early. I came to grips with this reality. When March 29th rolled around and Marissa was already two weeks and two days old, I felt a little twinge of sadness. I knew that if things had progressed "normally" with my pregnancy, she might be just days old, or maybe not even born yet. I was feeling a little sad and sentimental that day. Until we got to the hospital. Then those feelings turned to deep sadness and fear.
Posted by Alicia at 9:01:00 PM
Thursday, March 26, 2009
...this post is dripping with sweetness and cuteness. Get ready for many adorable pictures and a couple of videos that should make you smile.
First though, in regards to my last post, I did want to clarify that, if Marissa is sick and waking up in the middle of the night, I am sympathetic. If she is crying and I can't figure out why, I am sypathetic. I know something is wrong with her and she is too uncomfortable to sleep, therefore I can't get upset with her. All of her teeth have already come in, so she is not teething, and she is not sick in any other way. She has just gotten in this really bad habit of waking up way too early and thinking it is time to play. She lays there with eyes wide open and plays. THAT is when I lose my cool.
I wanted to thank you all for your kind and encouraging words on my previous post. We did get sleep, things did get better, and the monster has not reared it's ugly head again since. It is good to know I am not alone when it comes to the frustrations of motherhood. Thanks again from the bottom of my heart.
And now, onto the cuteness...
Posted by Alicia at 9:46:00 AM
Tuesday, March 24, 2009
That is what time Marissa decided to wake up this morning. That is what time Jeremy jumped out of bed in an attempt to put her back down.
Posted by Alicia at 6:15:00 AM
Friday, March 20, 2009
We have had a very busy week: 4 therapies, 1 dentist, 1 cardiologist, and 1 synagis shot.
Such is the life of a special needs kiddo!
The dentist visit went well. Surprisingly, this is probably the easiest of our many doctor's appointments. Marissa has visited the dentist three times. Each of those times, we have never waited more than a minute and a half in the lobby. They get us right back and into a chair. Then the dentist comes in and examines Marissa's mouth for about 45 seconds, with Marissa screaming her head off the whole time. Then he talks to me for about 5 minutes and Marissa calms down. Bingo Bango DONE!! Incredible!
G-tube fed kids have unique oral chemistry. They are at very low risk for tooth decay because they don't eat anything. Tooth brushing is recommended anyway, but they typically have oral aversion, so that does not always work. Also, because nothing passes through their mouths, they tend to have really bad tartar build up. We try to brush Marissa's teeth with varying degrees of success. Some days she won't let us get in her mouth at all. Some days, she'll let us brush but she constantly gags. Some days she does not have a problem with the toothbrush at all. Because of the sporadic nature of her tooth brushing, I was expecting the dentist to tell us she had massive tartar build up and would need to have it removed under anesthesia. To my delight, he said quite the opposite! He said there was no excess tartar and he just wants to see us back in 6 months!! YAY!!
The cardiology appointment went well also. Marissa was born with a PDA (Patent Ductus Arteriosis). There is a valve in the heart that is supposed to close at birth. Her valve stayed open. The doctors gave her three weeks to see if it would close on its own. It did not, so she had surgery when she was three weeks old to ligate it (put a clamp on it). She also has some other minor heart abnormalities, none of which should ever cause her problems in her life. However, they do need to be checked on periodically to make sure they are not getting bigger or worse. So yesterday, we went to the cardiologist to have an echo cardiogram and an EKG. Marissa did really well through the echo, which is an ultrasound of her heart. The EKG is where they put stickers all over your chest, put clamps with cables on the stickers and take a reading. By the time they were ready to do the EKG, Marissa was done! She threw a major fit. Luckily it is a quick test and as soon as she is still for a second, they take the reading and they are done.
The doctor said that every thing with her heart is status quo. He said he feels comfortable seeing her in a year and a half instead of a year. If she looks good at that point, he will see her two years after that, and so on. YAY again!! She will always need to be followed by cardiology, but the longer between visits, the better!
She got her synagis shot this morning, which is always an ordeal. Synagis is usually reserved for preemies their first year of life to prevent RSV. But airway kids are also susceptible and so most get it as long as they have airway issues. The shot is administered once a month, usually from October through March. Because of insurance dragging their feet this year, Marissa did not start her course until November, so she has one more month to go. Poor girl is big enough that she has to get two shots a month, one in each leg. She gets over it pretty quickly, so that is good.
As far as therapies, Marissa usually has three a week: Physical Therapy and Occupational Therapy on Wednesday, and Speech Therapy on Friday. Last week, this week and next week, Marissa has Speech on Monday as well to make up for sessions she lost when she was sick last month. As it stands right now, we are waiting for speech in about 30 minutes and then we are done for the week! Whew!!!
Lastly, I thought I would share pics of two more very cute outfits that Grandma Utah sent Marissa.
Future opera singer???
Posted by Alicia at 10:29:00 AM
Wednesday, March 18, 2009
Marissa has been trying to develop words for a long time now. She has been able to tolerate her speaking valve (PMV, which is the purple piece on her trach) for just over a year now, which means that for nearly the first year of her life, she had no voice. So, considering that, she is doing really well at talking. She can say many simple words clearly and really does attempt to say almost everything we say. She has gotten very good at mimicking. So good, in fact, that mommy and daddy are really having to watch what we say! For example, the other night I said "crap!" and I heard a little voice behind me call out "rap!!" Oops!
Posted by Alicia at 9:24:00 AM
Sunday, March 15, 2009
Posted by Alicia at 7:57:00 PM
Friday, March 13, 2009
Posted by Alicia at 6:14:00 AM
Wednesday, March 11, 2009
Well, I took Marissa to the ENT yesterday. Everything is fine, but I walked away with a strong feeling of disappointment.
Posted by Alicia at 1:27:00 PM
Monday, March 9, 2009
Posted by Alicia at 8:19:00 PM