Monday, August 12, 2013

Kindergarten - One Down!

I can't believe Isaac starts full day kindergarten today. Time has flown and kent mentioned how he was a little sad. It marks a passing milestone and the realization that my greatest influence is beginning to end. More time now will be spent with those outside the family and he is definitely ready for it - even if we are not.

I can look back and say I've worked hard, played hard and enjoyed so much of his last six years. He's a good kid with a good heart. We tried hard to foster that in him. In the end all the academic or worldly success will be nothing in comparison to a tender, kind and a faith filled soul. In wistfully excitement I anticipate his coming into his own.

Keila and Eli had to celebrate with a Costco berry shake, but even that got old quickly. By the middle of the day Keila was missing her best playmate.

The boy was bouncing out of his skin, so typical of Isaac - he is so enthusiastic and exuberant for it all. Watch out world, 'cause Isaac is coming!

Sunday, August 11, 2013

Party Right!

Keila opted for celebrating the big four with just family and when my kids choose this option I like to draw it out for a few days. Friday night we went out to dinner. She surprised me when she said she wanted to go for Chinese (and in this household, it's the real stuff - no Panda Express!). The dishes came out one by one and she ate everything , even the veggies and begged for more. She tried drinking the herbal chrysanthemum tea and loved it. All the way home she said she felt very Chinese and made extra attempts to speak it which had me smiling.

Saturday morning we went out to the Chocolate Connection, a branch out from the Cerreta company in Peoria. She and Isaac decorated hats and aprons and proceeded to make a chocolate pizza. There was even a story and a craft as well as free chocolates - well worth the $10. They both begged to have their pizzas for lunch, Mama may love birthdays but she's not lost her head completely yet!
Don't you just want to open your mouth wide under that chocolate waterfall?!
Eli was spoiled in his own way with graham crackers.
Smart kiddo knows when a good thing is coming! A sweet sister to share her treat with a little brother!

Keila spent the afternoon out with Kent where they hit up one of the best pet stores in town, Pratts. She got to love on and hold everything from bunnies, chinchillas to see goats and pot belly pigs. "A-doi-able" and "cute little vellas" everywhere - this apparently applied to even the mealworms!

I have always called her my Ladybug-a-boo (shortened to 'bug') and she has loved them ever since. Sunday she helped with the cupcakes which were what she calls "Lily-bugs". I attempted a flower and made some ladybugs out of fondant which she tried making herself. If you look carefully you might see hers, she says it turned out to more of a caterpiller and that's okay because "they're bugs too!" When serving the fondant she took great care to gift them to someone she felt would appreciate them. Then she opened her presents which were "purr-fect!"
It was a wonderful weekend! Happy Birthday my bug love, I love you!

Wednesday, August 7, 2013

Keila Will Be Four?!?!?!

This beautiful gal is going to be four in a matter of days! I'm amazed at how quickly time has gone by and how grown up she is. She has matured in so many ways this last year. Adjusting to a new sibling is hard for any child, but moreso for one that has special needs. I knew Keila struggled with the sudden lack of attention and Kent and I tried hard to show her our love and explain what was going on. I worried she didn't understand but in moments when we'd talk, especially at bedtime, I'd tell her how much I love even when things were rough and she'd pat me on the cheek and softly say, "I know Mama."

She's definitely an introvert and loves to observe people, especially women and will often ask me questions to better understand them. In some ways she seems like she three going on sixteen. She makes comments about how boys ought to treat girls and how modest other women are with a wisdom I pray stays with her, especially as social pressures increase with age. She has enough spunk to tell people and strangely it's made a difference in adults and children alike.

At the same time she is a tender soul and an ounce of kindness towards her yields gallons of love in return. She loves to help everyone and will be the first to sit and play near Elias just so "he won't feel lonely".

She had achieved her goal for her swim lessons and so I took her out to the mall to celebrate with a Cinnabon. It was delightful to have her happily chatting away with me and join me in shopping for all things girly. We went to the Disney store where she picked up on the concept and value of window shopping and we hit the play area to burn off some sugar and lastly the place with "all the pretty smelly lotions!" There was such an air of contentment and ease as we drove home quietly. As I pressed my lips to her very kissable cheeks goodnight she pulled me close and said, "thank you Mama. I love you always and forever," and my heart melted. How grateful I am to have Keila in my life. I know I was once terrified of having a daughter since I felt I only understood boys, but now I wouldn't trade her for the world, she's such a lovely child and I rejoice in the opportunity to see the lady she will become!

Sunday, August 4, 2013

Low Tone

In children with Down syndrome there is a notable difference in their body tone, specifically they have a low tone. To clarify, having tone is sometimes confused with the idea of having strength or a cut body which is not the same in this case. In the medical sense it refers to the tension in the muscles when the body is at rest. A typical body has a tension level even when not in motion to protect the body. For example a person walking trips, the muscles at rest in his arms suddenly react to brace his fall. In Elias his muscles sit at a lower tension so not only does he need the energy and work to achieve the status quo we typically are at, but he needs even more to actually move his limbs. I would venture to say that children with low tone are stronger physically than the typical person because it takes so much more to do the day to day things we take for granted. Eli's body may be soft but his strength would surprise you.

Eli doesn't have the same reflexes we have so this exercise was give to help him learn to brace himself in a fall. I nearly had a conniption the first time our PT did this with Eli since it looked like he was going to hit his head on the tile floor. She'd roll him forward while i planted his hands down. I'd yell stop as a verbal que and he'd smile thinking its a game.

This low tone is reflected in every muscle in the body. There are 3 types of muscle, skeletal which is the one we most often think of which give motion to our body. It makes up approximately 42% of a human male. There is cardiac muscle found in the heart and also smooth muscle found in the stomach, intestine, etc. When you really stop to thing of how much of our body is muscle you can begin to understand why there are so many problems associated with low tone. Eli struggles with digestion and is easily constipated. We've learned to massage him regularly or we have problems later. Thankfully he has a healthy heart, but you can imagine that a DS child who has a hole (I often think of it as a leak) in his heart must work so much hard to pump that blood and struggle against the inefficiency of it.
We bounce and roll around on an exercise ball to help his core muscles without which he would not be able sit up well let alone walk.

The most obvious result of low tone is seen in developmental milestones. The human body is a miracle and it never ceases to amaze me how we go from these tiny helpless lumps in to walking, talking beings. I recall seeing a tv program years ago of children in orphanages who simply laid in a crib all day. With little stimulus everything became stunted - mental, emotional, physical. In children with low tone their tendency is to simply lay there, after all no one takes on more work unless there's incentive. Its a chain reaction, very little movement leads to less stimulus which then does not encourage development and growth and on it goes. Early intervention becomes critical. Parents and therapist try to find the incentives that work best, sometimes a colorful toy, certain textures, noises or even food to help them achieve their milestones. While Elias is nearly 18 months, he physically resembles at 10 month old child.
Again on the ball but reaching up for a toy to help exercise the muscles in his back.

I'm sure you're all thinking Elisa's motivator is food given the family he's from. It's a good one but not the best. His greatest motivator is in interacting with kent and I. I can get I'm to crawl all around a room when he sees my attention is undivided. It's great in the sense that I'm with him a lot and I can get him working on his therapy everywhere we go but it's also rough in the sense that if I just leave him with the therapist he simply sits and stares at her and the time is wasted. He's been with Ms Lorri for over a year and just now learning to smile at her rather than wail like a banshee when she comes!
The toy is to distract him from using his arms to balance so that he muscles begin to adjust with the tilting of direction.

Since everything is so much harder for Eli, we celebrate the small victories. A few months ago I wrote a post of how Elias finally managed to put a Cheerio into his mouth on his own. It really was a big day for us! Right now he is desperate to walk. If he could have his way he'd skip crawling all together. Every chance he gets he will grabs a finger and attempts to toddle alongside for as far as he can go. He amazes me with his determination and I love how he waves his hands in the air, cheering for himself every time he achieves something, even just one step.
At the end of a day, much less a therapy session he is wiped out! He truly is a champ in so many ways, in is stamina, strength and most of all in his heart. I'm so blessed to have him!