...and their Answers

In my previous post, I shared my love of questions.

There are a few questions that I especially love to answer: questions about my little.

I am by no means an expert on Down Syndrome, but in these few short months, I have tried to research and learn as much as my little brain can hold to provide the best care for Baker.

 

Here are the questions I referenced...

 

How is therapy?

How often are you going each week?

How is Baker tolerating one-hour sessions?

What is he working on in physical therapy?

What are Baker's occupational therapists' goals?

What manipulatives is he using in therapy?

How is he eating?
How is his health, especially his heart?

What are your struggles right now?

 

And here are their answers broken down by topic...

 

Therapy

 

Baker attends two 30 minute sessions of therapy twice a week for both occupational and physical therapy. Many of the skills he is working on in one overlap in the other. In addition, he also has a teacher through Early Intervention that sees him once a week. She works from a similar list of objectives, but incorporates a lot of reading, singing, and sensory recognition as well.

 

In physical therapy, his therapists are working diligently to teach him the skills and provide him with the muscle memory necessary for sitting up. His previous goals of holding his head up and rolling over have been mastered! To do this, he is spending more time on a wedge/incline, Bumbo and bouncy seats, and the exercise ball. His therapists still encourage tummy time and time spent sitting up with our assistance. It is important that he learn to associate the floor as a source of support. This is necessary for sitting, standing, and walking.

 

This week, he did something incredible in PT - when he started to tilt to one side, he braced his body by using his hands for support. This is a huge milestone for a child with Downs! We had a throw-down celebration right there in Therapy Room 1!

With Baker, we find ourselves celebrating a lot!

 

In occupational therapy, his main goal right now involves reaching for items, holding on to them, and releasing them. The manipulatives for this objective are toys, toys, and more toys! Anything bright and loud makes the toy even more appealing to Baker and useful for accomplishing this task.

 

This has been a goal that I have been able to watch him reach incrementally over the past few weeks. It has been amazing to see his strength and determination. He is such a little fighter. At first, he couldn't make his arms do what his brain wanted, but slowly, he has taught his arms how to extend forward and grasp the desired object - most often his mommy's lips, his daddy's beard, or his elephant "phant phant" that hangs from his car seat. To see the drive Baker exhibits to overcome a task that is too difficult is such an inspiration.

Therapy is hard, hard work disguised as playtime.
Who can argue with that?

 

Therapy is a learning session for Baker, obviously. But more than that, it is a time for us to learn how to help him accomplish these developmentally appropriate objectives. If he was only to do these things in therapy for 2 hours a week, he would be lagging far behind his "typical" peers; but Brian and I devote ourselves to our son, and his development - we study, we observe, we mimic, and Baker wows in response!

 

Each week, we are able to go into therapy with a praise.

Something new he has done.

One more thing to check off of Peabody's Developmental Motor Scales Analysis.

Go Bake Go!

Eating

 

The kid's a machine. Seriously.

 

As I was reading our many resource books, a commonality shared by each was that a child with DS typically has difficulty feeding. We are so thankful that Baker has no problems eating - he must take after his daddy!

 

As a newborn in the NICU, he was tube fed for the first few days of his life, then we transitioned to nipple feeding, and finally I tried breastfeeding. He breastfed on and off for the first 8 weeks of his life. Due to hypotonia and familiarity with the bottle because of his time in the NICU, I was not very successful getting him to latch on. Since then, I have been exclusively pumping, and supplementing with soy formula. He is currently taking about 5 1/2 ounces every three hours. In addition to the bottle, he has accepted spoon feedings with ease. He eats oatmeal with either apples or bananas for breakfast, and has vegetables at lunch and dinner. So far, he's tried peas, carrots, squash, and green beans.

 

Verbal Skills

 

Baker is a chatterbox! I can literally hear him talking as I am typing in the security code to enter his school. I love it! He oohhs, coos, and squeals.

Everyone talks about how much he talks!

 

He is not currently in speech therapy, but we are doing many things at home to be proactive with his speech: we encourage him to mimic vowel and consonant sounds, make kissy faces, create different shapes with his mouth, stick his tongue in and out, drink through a straw (this is something we've just begun), blow bubbles with his mouth, and manipulate his tongue in various positions.

 

To be more specific, we don't have designated therapy sessions at home, but we are very intentional about incorporating these things into our day. It has become natural for us - whether we place a toy he must reach for on his high chair, or we sing a call and response song with him as we are preparing dinner, or we sit with him on the floor encouraging stability and strength. Just like hour long therapy sessions twice a week, and frequent doctor visits, this is not a hassle, nor is it an inconvenience, it's just something we do. Like you would roll your daughter's hair or make your son his favorite sandwich for lunch.
 

Something we love to do to help our son surpass the world's expectations of him.

Health

Baker is in good health.
The only medication he takes is a supplement - Vitamin D. And the occasional gas drops. Those things are liquid gold.
He has a nebulizer (breathing machine), but we only use it on an as-needed basis.

We are monitoring his vision, hearing, bilirubin levels, and heart.

Baker is both farsighted and has astigmatism. We will visit his pediatric opthamologist again in April to reassess this diagnosis.

He failed his hearing test in August, but I am sure my boy can hear. Make that absolutely, positively, convinced he can hear - he perks up when I pop the cap off his bottle, grins ear to ear when I turn the bath water on, and bounces up and down when his daddy pulls his truck into the garage. Nevertheless, we will go back to reevalaute this in a few weeks.

Baker's bilirubin levels have been elevated since birth. Many children are born with jaundice. Normal range is 0.5-1.0; Baker's was over 9 at birth. We are now down to almost normal range, but it is still something a pediatric gastroenterologist oversees. We go back on November 29 for bloodwork to check on this. I can't think of a better birthday present for me than a healthy diagnosis for my sweets.

Lastly, his heart. This is something we have been monitoring via ultrasound since preliminary bloodwork indicated there was a heightened chance of Baker being born with Down Syndrome. He was born with a PFO on his heart. As you will read here, this is something that does not require treatment, and is not a source of concern for our doctors.

I daily thank the Lord for Baker's health.

 

Struggles

 

I'm going to try to be honest here.
 

If I were to say I am not struggling with anything, I would be dishonest.
But, while I try to be open and honest on here, there are some struggles
that I choose only to share with my husband, or my mom, or my small group of girlfriends.

I hope you will respect that, and instead of praying for a specific area of weakness, you will just lift us up.
God knows our needs.
 

I struggle with discerning God's plan in all of this. How can I use my platform as a wife to Brian, mother to Baker, child of Christ to bring honor and glory to Him.

 

I struggle with the future.
What's to come?
Baker's education, his mental and physical abilities, his health, and so on and so forth.

Jeremiah 29:11 states,

"'For I know the plans I have for you,' declares the Lord. 'Plans to prosper you, not to harm you, plans to give you a future and a hope."

A friend in Sunday School also shared a verse from Isaiah today,

"'For my thoughts are not your thoughts,

 neither are your ways my ways,' declares the Lord.
'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9
I read that and I hear those words, and my struggles seem trivial.
God has plans, thoughts, and hopes for our Baker boy, and that's enough for me.

I will try to do another Q and A in a couple of months as Baker grows and progresses. In the meantime, ask and I will tell. You know I love talking about my little bitty.

In the words of the wise Porky Pig,
"That's All, Folks!"