To most people, stopping for a cup of coffee is a normal experience that comes easily at any desired time. As a special mom, you must know that a coffee break is a luxurious experience that only comes when our kids are well and are able to be at school or we are lucky enough to have care for them. I was fortunate to have that break this morning. Alex had a wonderful start of the day today. It made me happy to see that, medically she was having a decent morning which got her in a great mood and ready for school. My friend and I hightailed it to the nearest Starbucks as soon as we dropped the kids off. We truly had an "aha" moment as we sipped our brew and talked for an hour. It is absolutely amazing what a cup of coffee can do. Life couldn’t have gotten any better….. Enjoy your Fridays and Coffee’s moms..
©Copyright 2007.Najwa S. Hirn. All rights reserved.
Friday, August 31, 2007
Thursday, August 30, 2007
The rendezvous...
I am rather late with my posting today. The reason for that is the fact that every Thursday afternoon, Alexandra and I go to a library two towns South of us to meet our Chilean friends, a grandmother and her granddaughter. Our encounter with them is somewhat fascinating. You see my daughter doesn’t do kids very well. She has no peers and does not really know how to interact with our younger human race. Some of them (the screaming ones) scare her to no end. I guess they would scare me too… However, as part of Alex’s therapy, we happen to be visiting this library back in March of this year. It is important to expose Alex to different environments. As we sat doing crafts in the children’s section, we became like a beehive that attracted all the little bees in the form of kids flocking to help us. This one particular child was so attentive to Alex’s needs and even began learning sign language to help her out. I don’t know what magic this kid has but my daughter gravitates towards her and actually enjoys her company. In the meantime, I enjoy the grandmother’s company. We have formed our own sign language and arm gestures to communicate our needs since my little Spanish and her little English is not enough sometimes. Between the kids gesturing to each other and us adults gesturing to each other we bridge our cultural differences and get our points across. So even with this limited Flintstones’s era form of communication, we still have a wonderful time. Who said it can’t be done …..
©Copyright 2007.Najwa S. Hirn. All rights reserved.
©Copyright 2007.Najwa S. Hirn. All rights reserved.
Wednesday, August 29, 2007
Just another morning...
We did make it to school this morning. Honestly.. . a huge 3 minutes late… even though, we still had to check at the office and accept that tardy slip so graciously. No problem! we are still doing good. The main thing is that my daughter, Alexandra (Alex for short) is loving school. This is a big change that I never dreamed would come true…
I’ll have to explain here how most of our mornings go. Do you recall seeing the little hamster that loves to run frantically around the wheel. The faster he goes the more frantic it gets. That about describes our start of each day.
Due to Alex’s prematurity and medical issues, mornings are tough for her. She develops a lot of mucus in her system during sleep as well as excess gas in her tummy, possibly due to the use of her gastrostomy tube during the day. And since she has mild CP, her muscles don’t work well upon waking up and she has to constantly cough and spit up to clear up her system.
This takes time. I have learned across the years, not to rush her. She needs her time to get adjusted. Even though we may be late, her health has to come first…
With all that said, I must say that we are still very blessed. It could be a lot worse…..
©Copyright 2007.Najwa S. Hirn. All rights reserved.
I’ll have to explain here how most of our mornings go. Do you recall seeing the little hamster that loves to run frantically around the wheel. The faster he goes the more frantic it gets. That about describes our start of each day.
Due to Alex’s prematurity and medical issues, mornings are tough for her. She develops a lot of mucus in her system during sleep as well as excess gas in her tummy, possibly due to the use of her gastrostomy tube during the day. And since she has mild CP, her muscles don’t work well upon waking up and she has to constantly cough and spit up to clear up her system.
This takes time. I have learned across the years, not to rush her. She needs her time to get adjusted. Even though we may be late, her health has to come first…
With all that said, I must say that we are still very blessed. It could be a lot worse…..
©Copyright 2007.Najwa S. Hirn. All rights reserved.
Tuesday, August 28, 2007
Back to School
My daughter is finally back at school this year. We survived the first week with not too many mishaps. Considering her situation, I believe we did rather well. Her adjustment this year truly amazed me specifically since she has been out of school for the past entire year. She was on hospital homebound for the past year due to a surgery that she underwent last September.
We actually had a very stressful and confusing year last year before the surgery. She started suffering low-grade fevers and severe constipation as of March 2006. There was no apparent known cause to it at the beginning and it was attributed to a viral infection. Due to her severe constipation and hardness that showed on her belly, the doctors sent her for abdominal X-rays and ultrasound and the initial scary results seem to indicate a Bowel loop which is another term for Small Bowel Obstruction. The hardness continued to increase in size. She was unable to pass her stool without the use of laxatives specially Miralax and the fevers did not subside for those stressful six months. Eventually, during the Labor Day weekend, the hardness became red and prominently expanded from the belly as her stomach swelled. It was clear that it was a very large abscess. We were all lucky that it was caught in time and surgically taken care off before the toxins in the abscess burst into her abdominal cavity.
The interesting fact is the cause of this thing is a suture that did not dissolve by her system. This suture was placed there after a hernia surgery that was done while she was still in the NICU eight and a half years ago. Of all the things that can go wrong….
©Copyright 2007.Najwa S. Hirn. All rights reserved.
We actually had a very stressful and confusing year last year before the surgery. She started suffering low-grade fevers and severe constipation as of March 2006. There was no apparent known cause to it at the beginning and it was attributed to a viral infection. Due to her severe constipation and hardness that showed on her belly, the doctors sent her for abdominal X-rays and ultrasound and the initial scary results seem to indicate a Bowel loop which is another term for Small Bowel Obstruction. The hardness continued to increase in size. She was unable to pass her stool without the use of laxatives specially Miralax and the fevers did not subside for those stressful six months. Eventually, during the Labor Day weekend, the hardness became red and prominently expanded from the belly as her stomach swelled. It was clear that it was a very large abscess. We were all lucky that it was caught in time and surgically taken care off before the toxins in the abscess burst into her abdominal cavity.
The interesting fact is the cause of this thing is a suture that did not dissolve by her system. This suture was placed there after a hernia surgery that was done while she was still in the NICU eight and a half years ago. Of all the things that can go wrong….
©Copyright 2007.Najwa S. Hirn. All rights reserved.
Monday, August 27, 2007
Welcoming Message
This is a short welcoming message to all the special moms and dads out there who are taking care of very special kids. So here goes : WELCOME ALL YOU SPECIAL PEOPLE OUT THERE.
I am creating this blog to reach out to special moms for the purpose of forming a group that can most of all share important information regarding the care of our kids as well as create friendships, support, care and anything else we’d like to share. As a special mom you are well aware that our job is never done. Many a time we need a friend to lean on or to call for advice. Also, as a special mom we have become well versed in many medical terms than we care to admit too, as well as our constant love affair with the internet that is nourished daily by our frenzied searches and researches. Search engines have become our friend as we surf the net looking for answers that can help our kids and ourselves in the process.
I will try to post daily but as a special mom you are also aware that this may be impossible on some days. Some days are so busy that every second counts and we barely have time to go to the bathroom!
I will welcome participation from all of you out there. (Please participate). Share your stories; ask questions, give suggestions or advice and make friends. If you have a recipe for a comfort food, post it, if you have a lead to a good doctor or therapy, post it, if you have something to sell or need an item, then post it… etc.
Thank you for letting me be here today sharing with you. It is my pleasure to become your friend as we embark on this journey.
©Copyright 2007.Najwa S. Hirn. All rights reserved.
I am creating this blog to reach out to special moms for the purpose of forming a group that can most of all share important information regarding the care of our kids as well as create friendships, support, care and anything else we’d like to share. As a special mom you are well aware that our job is never done. Many a time we need a friend to lean on or to call for advice. Also, as a special mom we have become well versed in many medical terms than we care to admit too, as well as our constant love affair with the internet that is nourished daily by our frenzied searches and researches. Search engines have become our friend as we surf the net looking for answers that can help our kids and ourselves in the process.
I will try to post daily but as a special mom you are also aware that this may be impossible on some days. Some days are so busy that every second counts and we barely have time to go to the bathroom!
I will welcome participation from all of you out there. (Please participate). Share your stories; ask questions, give suggestions or advice and make friends. If you have a recipe for a comfort food, post it, if you have a lead to a good doctor or therapy, post it, if you have something to sell or need an item, then post it… etc.
Thank you for letting me be here today sharing with you. It is my pleasure to become your friend as we embark on this journey.
©Copyright 2007.Najwa S. Hirn. All rights reserved.
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