Tuesday, May 26, 2015

Here's where we stand

It's been a long time coming, but I've got great things to report about my boys.  

Let's start with Reese.  

First off, I covet your prayers as we have ventured into unknown territory.  This week Reese will start seeing a new developmental/behavioral specialist and in June we will be adding another doctor to the mix.  Our hope is that the additional doctor will help manage his anxiety and OCD, as well as, help us determine if he also has a learning disability.  

He will finish first grade next week and has done really well with Math, Science, Social Studies, and Related Arts.  Reading and Writing are tougher for him, but he has made great progress in reading.  He has made other improvements at school with the help and encouragement of his teacher (Mrs. Wigington), his guidance counselor (Ms. Lee), and his assistant principal (Mr. E).  They have gone above and beyond with him and he loves school.  Today he met his new teacher and classmates for second grade.  We will start praying now as she has big shoes to fill!  Reese LOVES Mrs. Wigington, and I think the feeling is mutual.  No, I know it is!  She has been such a blessing to him and us.  

This winter he played basketball in the local rec league.  His 6 & under team included several children that he goes to school with.  They were the league champions!  In April, he started archery lessons and he is doing VERY well.  His instructor has been great with him and he loves the lessons.  This summer we are looking into karate as well.  

Now for Brinkley

This kid never ceases to amaze me.  We've had a few ear infections and sinus and allergy issues lately, but otherwise his health is great!  Thank the Lord for ear and sinus infections.   I know that sounds crazy, but to me these are typical kid problems and I love him being a typical kid!  Overall, Brinkley is a healthy little guy!  We're seeing Endocrinology every four months with the plan being to take him off the thyroid meds for a trial period in the next couple of years.  For now his thyroid is well managed.  Since we continue to be free from any neurological problems, neurology is only seeing us twice a year.  Developmental Peds and Genetics only need to see us once a year.  Due to the severity of his sleep apnea, we continue to see sleep medicine every three to four months.  

Brinkley's eye doctor only needs to see him once a year.  We continue to see the ENT every three to four months to keep a check on the tube in one ear and to determine when we can attempt to put a tube in the other ear.  The GI is seeing us twice a year, as is the nutritionist.  Last week we saw Dr. Raunikar, our cardiologist, and got the best news yet.  We only have to see him once a year now.  The cardiologist that manages his pacemaker has also given us clearance to only see her once a year.  We send electronic transmissions every three months.  As of last week, we still have three years of battery left on his pacemaker.  

As for therapy, Brinkley is consistently walking with his walker.  After months (literally 4-6 months) of fighting insurance to get him a walker of his own, we finally got it last week.  He is making a lot of progress with his speech and his vocabulary is growing every day.  Occupational therapy is also going well.  We were able to get his braces cut down this month, so now they only come up to his ankles.  

Our biggest surprise has been that he has grown 1 inch and nearly 3 pounds in the last 5 weeks!  (He's up to 23 pounds and 30 inches.)   This is HUGE!  It generally takes months for him to gain a pound. He just may make the growth chart by his birthday.  Speaking of his birthday, next week we will meet with the preschool staff at Reese's school to officially prepare for Brinkley to enroll in the K3 program in the fall.  WHAT!!!  It's hard to imagine my tiny little guy going to school. He's ready though.  He loves playing with other kids and he enjoys sitting down and working on projects like coloring, drawing, cutting, and gluing.    

As you can see, we are doing well and appreciate your continued prayers and support!  

1 comment:

  1. HI! I couldn't find a link to email you directly so I thought I'd try to contact you through the comments!
    My name is Candace Chatman and I am a graduate student receiving my Masters in Occupational Therapy at California State University, Dominguez Hills. My colleagues and I, Haley Arnold and Cassie Duwe, are conducting a quantitative research study measuring the quality of life and stress among caregivers of individuals of Down syndrome. We are reaching out to your blog to see if you'd be willing to share our survey link with parents who are a caregiver of a family member with Down syndrome. Participants will complete our online survey that will take approximately fifteen minutes and all responses will remain confidential.

    Criteria to participate in this survey require the caregiver to be 18 years of age or older and caring for a family member with Down syndrome, have access to both a computer and the Internet, and comprehend English.

    Caregivers face the unique challenge of balancing self-care, leisure, and work occupations with the task of caring for another individual. Through this research we hope to give caregivers a louder voice, contribute to the field of occupational therapy, and add to the research that will provide support for future change.

    If so, we will need a letter of support from you to submit to our IRB board. Once we submit your letter of support, we can provide the flier and link to our survey for you. You would just need to put the following in an email with your formal letter head/logo.

    We at …... are pleased to support the research of Haley Arnold, Candace Chatman, and Cassie Duwe in conducting their project entitled "Quality of Life and Stress Among Caregivers of Individuals with Down Syndrome". I have agreed to distribute their recruitment flyers, links to surveys, and/or any other materials that need to be distributed to assist in recruitment of possible participants.
    Thank you in advance for considering distributing our survey to your clients! Please let me know if you have any questions.

    If you're not willing to share the link to our survey, please consider completing the survey yourself. Your spouse can also complete the survey!

    Candace Chatman