Thursday, September 24, 2015

To the moms of the children with special needs in my daughter's class

     As my daughter started kindergarten this year and my work schedule was graciously reduced per my request after having my son, I decided to become co-room mom.  (I do not recommend this, it is WAY more work than you would think!).  There are two boys with special needs who are in the class and do some work outside the class with the special education department.  Research has shown that the more a child with special needs stays in the classroom with his or her peers, the better.  Several of the parents I have met through the Down Syndrome Association talk about how they sometimes have to advocate to get their children into the classroom with their peers.  
     The other room mom and I are doing monthly crafts and we recently did our first one--an apple sun catcher.  I volunteered along with 4 other parents.  It was very difficult for the 5 of us to maintain control of the classroom.  The kids were everywhere, I am not sure how one teacher manages that many five year olds.  As the craft got started, the teacher called down to the special education department and had the two boys come down.  Two assistants came with them and helped them with their projects.  I may not ever get the chance to meet their moms, but if I did, this is what I would say:

Moms, 
I want you to know, I did not overlook your sons.  I was extra kind to them, I called them by name.  I made sure they had their supplies.  I took several pictures of them for the class photo album.  I noticed their empty seats during the curriculum night for the parents.  Maybe you were in the special education department trying to figure things out and going over things?  Maybe you do not consider them a part of the class?  I want you to know moms, I do.  I am pulling for your boys.  I am trying to teach my daughter to be extra kind to them.  I am hoping that she will talk to them, even though she has decided that she does not talk to boys, I am hoping that she will make an exception.  I told her she should talk to them because they may not have as many friends as her because they are not in the class all the time.  I know that I will be in your shoes, moms, in 5 years.  I am hoping someone else's child will be kind to my son.  I am hoping that he will be invited to birthday parties and have someone to sit with at lunch.  I am sorry that I never would have thought much about this until I received my son's diagnosis.  Thank you for leading the way for my son.  
Sincerely,
Your room mom

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!