Category Archives: therapy

Progress Report

David turned 8 months old on January 4. Happy, happy boy…

image

We began our new year with doctor’s appointments. There is always a dread as these appointments draw closer and a sense of relief when they are over. David saw his pediatrician, and received a good report. He weighs 18 pounds, and on the Down syndrome growth chart he is 75% in his weight (no surprise there) and 25-50% in his height. His oxygen, heart rate, and blood pressure were perfect! He had his scheduled CBC and thyroid test. Both came back normal, and I was very thankful. I have said many prayers concerning both test. Children with DS have a slightly elevated risk for childhood leukemia. This fact scares me – I think about it every day. I am more fearful than I should be, and I have to constantly remind myself of God’s faithfulness to us in the past year. Both of these test will be repeated in 6 months, then once a year until he is 5. David also had a follow up appointment with Dr. Feliz (the surgeon who performed his Hirschpreungs pull through). All looked well. I felt like this poor little guy had a tough week – a finger prick that left the nurse squeezing his finger for a very long time, blood drawn from his arm, and a very painful rectal exam that left him screaming and left me thinking I was going to pass out. He will have his eyes and hearing checked in a few weeks. If you think about it please pray for his hearing test. His last test was a few months ago. One ear was perfect, but the other ear was full of fluid and non-responsive. The doctor felt like it was from the fluid, but his ears will have to be checked again.

We are pursuing a variety of nutritional supplements and foods to help support David’s growth and development. I have joined a support group who treat their children needs through both medical interventions, supplements and clean (organic) diets.  I have also found a group of families who implement the same type of therapy program. I am excited to be a part of these groups and to learn from their experience.

We are still doing therapy with David every day. We are seeing some progress, but it is slow. Some days leave me weary and near tears because I want to see more progress, but other days I am content with the progress I do see. We are still working on sitting. The average range for a child with DS to begin sitting on their own is anywhere from 7 – 15 months. David can tripod sit for longer periods of a time, and he has graduated to an exer-saucer and bumbo seat. He is rolling all around on the floor. I will find him under chairs or off the rug on the concrete floors. He is holding a bottle on his own. It’s a small bottle, but it’s progress!

image

He is “talking” more. He is saying “mamama” – of course this thrills me.

And Lily…

image

Well, she is busy being a great big sister and mama’s big helper. She really is alot of help around the house (she folded a basket of laundry this morning all by herself – woohoo!) About a month ago she was playing with her doll, and I heard her say, “It’s time for your therapy.” Tears instantly stung my eyes, and in my sinfulness I thought that no little girl should be familiar with that type of language. My world, Lily’s world, our everyday vocabulary is different from what I ever imagined, and I remind myself that this is not a bad thing. I pray every day that God will teach us needed lessons, bless us to grow into better individuals.

Both of these kiddos bring me so much joy!

image

David’s New Trick

A few months ago I began researching different types of therapies that might assist David in learning to sit up. Sitting up is our next big milestone, and I want to do what I can to help David achieve this milestone. Children with Down syndrome have low muscle tone, so their development is delayed. The majority of a baby’s physical development comes from their core strength. Rolling over, playing with toes, sitting up, putting weight on legs, army crawling, crawling, pulling up, and walking can not be achieved until the core muscles are strong enough to support this type of movement. When I try to find therapies for David I look for the advice of other stay at home moms, not because I think they are experts on all things. Stay at home mothers are able to implement a consistent therapy program with their Down syndrome children because they are with them all day. Here is what I found and what I have been doing with David for several months.

Any time David is in a reclining position we do the same three things each time before I actually pick him up. He has to reach for me. Once his arms are all the way up I grasp his fingers and help him do a mini crunch into the sitting position. I help him hold the sitting position for a few seconds and then I pick him up. I always cheer for him, and he breaks out into the BIGGEST grin. So, over the course of months he has done hundreds of these mini crunches. He has held the same sitting position hundreds of times, but today I turned loose and…

TA-DA!! TRIPOD SITTING!

image

He was able to hold this position for 10-15 seconds. I think those chubby rolls in his arms helped.

I had a difficult weekend. A weekend where I struggled with David’s physical delays.  I was reminded today that God knows. He knows my weakness. He knows my desires. He knows my heart and struggles. On this day when I was feeling discouraged – He knew, and it was no accident that David’s “trick” happened today.

Therapy

Over the weekend Louis and I took David to Jackson, Tennessee to be evaluated by a Neurodevelopmental therapist. We have talked to doctors, nurses, occupational and physical therapist, geneticist, parents and they have all told us the same thing – early intervention is the key to success.  We saw occupational and physical therapist at LeBonheur who gave us a few things we could implement at home. They encouraged lots of tummy time, no swaddling blankets, tracking with eyes, and then just encouraging normal baby interaction. I have researched and been working with David on a variety of different therapies, but really I have felt lost.

We have been praying for guidance – praying the Lord would lead us to the right therapist with the right approach. We feel as if our prayer has been answered.  The therapist we saw had a brother, Scott, with DS and two-thirds of his clients are children with DS. We have read testimonials of phenomenal results from individuals who have implemented this therapy program- exploding vocabularies, early potty training, elite gymnasts, perfect speech, easy social interaction, independent living (with parents close by). Michael Kane, the therapist, is a Christian, a husband, a father, a practical man who understands that life is busy. While he encouraged us to push towards therapy completion everyday he stressed that some is better than none and to do what we can.

David’s therapy consist of 24 intense, repetitious stimulating activities. His therapy activities cover fine and gross motor function, auditory function, language function, visual function, and tactile function. I am easily overwhelmed, and as a stay at home mother the majority of David’s therapy will fall on my shoulders. I am not complaining. I am SO thankful for my role as a full time mama. I am praying the Lord will give me a long term vision for the future, but the ability to focus on this day – this day with my daily grace. As parents, Louis and I, both want what is best for David. We want him to be as high functioning and independent as possible. We have high hopes and are encouraged, but we have our work cut out for us. If we cross your minds please pray for us.