Wednesday, September 16, 2015

What makes you different makes you special

As my oldest daughter is starting kindergarten, I've been trying to prepare her for that inevitable day when someone makes fun of her.  I am also aware that some day someone will say something mean to her about her brother.  I came across a post someone made using the phrase "what makes you different makes you special" and I really liked it.  So, I explained to her that since she had straight hair and her sister had curly hair, they were different from each other, but that their hair made them special.  I asked her what was different about her brother.  Her response was that his hair was short like his dad's.  Even now, she still just sees him as her baby brother.
He also has proved us wrong.  The last time his physical therapist saw him she warned me that it would be a while before he began rolling over.  I agreed with her, saying "I know he is no where near rolling over."  The very next day, he got so mad about being on his stomach (which is one of his exercises) that he rolled himself over to his back!!!!  I keep trying unsuccessfully to capture it on video.  He is still not doing it regularly, but he has done it a few times.  He is also cooing quite a bit (usually when I am somewhere that he needs to be quiet), smiling and laughing.

Sunday, August 2, 2015

Two months in

     Asher is now two months old and is such a blessing.  He is definitely my easiest baby.  I guess he has to be with two older sisters.  He does have an atrial septal defect, which is a small hole in between the upper two chambers of his chart.  He had an echocardiogram done the day after he was born and was thought to have 3 holes in his heart, so to only have one when we went back for his follow up is an improvement.  I was assured it should not be causing any problems now, and may close. If it does not close on its own, it can most likely be repaired via a cardiac catheterization when he is a toddler.  We are so happy that he should not have to have open heart surgery.  He does have a few minor issues such as low tone in his neck muscles and problems feeding, which we are working on.  Despite having relatively few medical problems, he has had TWENTY appointments since he was born.  I cannot imagine how many he would have if he had a serious medical condition!!!
    Last week, his physical therapist, whom I love, came over for a session.  She had seen him about a month ago and instructed me to do some exercises to improve his neck muscles.  Well, the strength in his neck has improved, and she agreed.  I thought, "mission accomplished," but oh no.  She thought he was "preferring" his right side, so I needed to make sure his head is turned to the left when he lays down. She also wants his arms and legs to come more to his midline, so I have to prop up his arms and legs with a pillow and rolled blankets or socks.  Basically she does not want him to lay all sprawled out.   She showed me a few additional exercises to do with him.  I am also supposed to keep doing the initial exercises I have been doing for the past month.  No big deal.  After that, he had a swallowing study scheduled.  Having two appointments in one day was a terrible idea.  The speech therapist who was seeing him for feeding wanted to check to make sure he wasn't aspirating when he ate.  She thought the test would probably be normal, but wanted to do it as a precaution.  Well, the test showed that he aspirates thin liquids, it was inclusive when he uses a preemie bottle and he does fine with thickened liquids.  She gave me the choice to either use the preemie bottle and also nurse him and see how he does or to use thickened milk.  That sounds easy.  The problem is that he is noisy and is noisier when he eats.  So now I am supposed to decide by which method he is less noisy.  That sounds easy, but is really hard to do!  Plus, it takes him twice as long to eat using these methods, which I guess is the point, right?  When I got home, I read the physical therapy progress note and noticed she wrote "as much as possible."  To me, as much as possible means every waking moment except when he is eating or sleeping.   Needless to say, I felt a little overwhelmed.  
    The next morning, as I was walking in the gym, holding him, and SLOWLY feeding him with the preemie bottle, I was trying to reflect on some positive things.  I thought, well at least I have bought all of my kindergartener's school supplies and uniforms!  Teachers, if you have a specific item on your list, I suggest you write in parentheses where it can be found.  Her list request two writing tablets with 5/8 inch lines with 8 lines on each page.  Surely Walmart, Target, Staples, Office Depot or Kmart carry these, right?  No, no they don't.  I finally gave up and bought her some with 7/8 inch lines.  But then I imagined her teacher recognizing my child's work by her big lined paper and rolling her eyes up in her head and I decided to keep searching.  I finally found them at a teacher supply store!
     It seems like every time I start feeling sorry for myself, the Lord reminds me of my blessings.  A few days ago we went to the Super Hero send off party at the library to celebrate the end of the summer reading program, because of course we couldn't miss that.  I was standing in line waiting for them to get their prizes and I noticed this little girl who seemed to be choking.  I was trying to dust the cobwebs off the part of my brain that remembered the PALS (pediatric acute life support) algorithms and was preparing to do chest compressions while singing to myself "Staying Alive" to make sure I performed the compressions at the correct rate (this is true, look it up).  I yelled at her mom to ask if she was okay.  Her mom said, "yes, she just has an airway condition."  I felt very glad that my child was not having a near death experience in the library, and felt a little less overwhelmed by what he has going on.  
    We love him dearly, as do his sisters, almost too dearly.  My three year old asked when he was a few days old, "why don't my fingers fit in his nose?"  Good question.  
    Here is a picture of two of my super heroes.  Does Teenage Mutant Ninja Turtles really count as a super hero?  I am not sure, but I had to work with what I had.  My baby superhero was dressed as superman and is missing from the picture because even superheroes need to sleep some times.  


Friday, May 22, 2015

Special Delivery

     We have been getting weekly biophysical profiles to make sure he is not in distress.  Basically it is an ultrasound that looks at his movement, tone, amniotic fluid level and breathing.  He did not do well at the appointment yesterday, so my physician decided to induce him.
     Well, we are excited to announce he has arrived!  He weighs 7 pounds 1 ounce and is 20 inches long.  We love him dearly.  We were praying that he would not have to go to the NICU, and our prayer has been answered.  There are no concerns at this time with his heart, another prayer answered!  Thank you all for all the prayers, love and support.  We are truly overwhelmed.  More pictures to come!

1 Samuel 1:27 "I prayed for this child and the Lord has granted me what I asked of Him."

Psalm 126:3 "The Lord has done great things for us; and we are glad."

Saturday, May 9, 2015

Welcome to the circus!

We are FINALLY done with the nursery!  I chose a circus theme because it matched the curves of the bed that my dad made and I have used for each of my children.  The room could not be complete without a wreath to hang on the door.





Thursday, May 7, 2015

Graduation

     We went to the high risk doctor this week, for what I was hoping would be the last time.  He was looking at the growth and making sure the organs looked normal.  And...everything was great!  He is growing normally, weighs 6 pounds and everything else looked good!  On my check out slip, the doctor wrote "graduated!!"  I have never been so happy and relieved to leave a doctor's office.  Hopefully the last 3 to 4 weeks of pregnancy will be uneventful.
     We are trying to prepare ourselves mentally that he may require a stay in the NICU, but are praying that he will not need to be in the NICU and can come home when I am discharged.  Thanks again for all your prayers and support.   I will post pictures of the circus themed nursery soon!

Monday, April 6, 2015

Uneventful

     We had an appointment with the high risk OB doctor today, and it was uneventful!  Trust me, this is the word you want to use to describe these appointments!  The amniotic fluid level has decreased and is now in the high normal range.  All the baby's organs looked good.  His femurs are a little shortened, which is expected in a child with Down Syndrome, and the doctor is not concerned at all.  This has Eddie concerned, maybe because he is afraid he doesn't have a future playing for the Kentucky Wildcats.  Even considering his shortened femurs, his is growing well, he already weighs 4 pounds 7 ounces!  Unless something comes up, I just have to go back in 4 weeks and check on his growth.  This will likely be my last visit there.  I now have to see my OB once a week, which is better than the twice a week I was expecting.
    We appreciate all the prayers, kind words, and support.  Based on the comments we are receiving from Facebook and in person, we think that hundreds of people are praying for him.  We truly believe that this is why everything is going as well as it is, because it certainly could be going the other way.   Hopefully future posts will be cute baby pictures and funny stories!


Saturday, March 21, 2015

World Down Syndrome Day

     Today is World Down Syndrome Day.  Get it--3/21 for 3 copies of chromosome 21.  A year ago I did not know this day existed, I could not have imagined how significant it would be to me this year.  The past few months I have done quite a lot of research on the subject and have learned so much.  If you know me at all, you realize that sometimes I can get a little obsessed about something.  My current obsession is reading books, ebooks, blogs, message boards, etc. about Down syndrome.  I read one post where a lady who was expecting a child with Down syndrome decided to give up researching Down syndrome for Lent, because she was going a little overboard.  I considered this, but thought that a medical issue might come up at one of my appointments, and I would have to research it, plus I am not Catholic, so I decided against it!  Anyways, I wanted to post today to focus on some of the positive things I have discovered about Down syndrome and show how far things have progressed in recent years.
     In 1929, the life expectancy of an individual with Down Syndrome was 9 years!  Now the life expectancy is 55-60 years, thanks to the many medical advances.  Dale Evans Rogers (wife of Roy Rogers) wrote Angels Unaware in 1953 about her daughter Robin, who had Down syndrome.  This was first book ever written by a parent of a child with special needs.  It was written at a time when doctors often advised parents of babies with disabilities to put them away in institutions or homes.  The Rogers refused to do this and raised Robin in their home.  This book changed the way America looked at children with special needs.  I happen to have several copies of this book, thanks to my Grandma, who had several copies of this book and gave them to me, some of them purchased when the book first came out in the fifites.  
     Today, thanks to advances in education, children with Down syndrome have a bright future ahead of them.  Here is a link about a photographer who has Down Syndrome http://oliverhellowell.com.  Read here to learn more about a restaurant owner with Down syndrome  http://www.deseretnews.com/article/865575021/Restaurant-owner-with-Downs-Syndrome-seves-breakfast-lunch-and-hugs.html?pg=all.  Here is a famous potter who has Down syndrome http://www.christianroyalpottery.com.  And we all remember Corky from Life Goes On.   Here is a link to his fan club http://www.chrisburke.org/fanclub.php
     Advocates for Down syndrome, and other conditions, recommend using people first language.  Always using the terminology a child with Down syndrome instead of using Down syndrome as an adjective, like "Down syndrome baby."  I think we can all agree that the person is more important than whatever condition he or she has.  Also, we should avoid using derogatory words to describe intellectual disability, even if we are telling a joke.  It really is hurtful.
     Having a family member with Down syndrome actually enriches the family's life.  Research has shown that siblings of children with Down syndrome tend to be more compassionate and well-adjusted.  Siblings of children with Down syndrome are more likely to choose service related careers like social work, medicine, or education.  One study showed that while the divorce rate among parents of a child with special needs is higher than average, the divorce rate among couples who are parents of a child with Down syndrome is lower than the average divorce rate.  
     A few books I have read and recommend to anyone who is interested include A Good and Perfect Gift by Amy Julia Becker, Bloom: Finding Beauty in the Unexpected--A Memoir by Kellie Hampton, Angels Unaware by Dale Evans Rogers (although the language is outdated and would now be considered offensive), and I am currently reading The Shape of the Eye: Down Syndrome, Family and the Stories We Inherit by George Estreich and so far I recommend it.  Some of these authors also have blogs, which are much more interesting than mine!  Believe it or not, I am actually not a writer, I had to look up how to punctuate the title of a book when writing an essay.  According to the MLA, you italicize it.  
     So, enjoy this day and think about the people in your life that have Down syndrome, or just think about our sweet little baby you will be meeting soon!  It is kind of fun to have another holiday to celebrate each year.