Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Whine fest over

After yesterdays whine fest I realize I had not really provided anything conclusive, which is what I set out to do. Here are the specific issues each of our daughters are now dealing with:

Gracie - With very minimal speech Gracie is now requiring ST. Some of the people in our life are of the "she will talk when she talks" mind but that (IMO) is denial. She is almost two and has almost no speech except ASL. So the therapist will be working with strategies to get her talking. Part of her lack of talking is because of poor motor planning. The part of her brain that creates speech is having a hard time getting her mouth to do what it needs to do. The motor planning problems also display themselves in some of her other motor skills. She is behind for her age on fine motor skills so we will be working hard on that in therapy. The last part is the sensory issues. Both girls have a Hyporeactive Sensory System, meaning their bodies crave more stimuli than the average individual to feel like it is working at optimal performance. This can easily lead to being overstimulated. This is something we will work very hard to fix before the girls are school age.

Abby - You all know most of what Abby has been dealing with for a long while now. She is severely delayed in her gross motor skills, overall balance and tone. The neurogeneticist found that the structures in her brain that we knew were impacted are more impacted than initially thought. Her cerebellum problems are of particular concern.

Here is a quick and dirty explanation of the cerebellum thanks to wikipedia:

The cerebellum (Latin for little brain) is a region of the brain that plays an important role in the integration of sensory perception, coordination and motor control. In order to coordinate motor control, there are many neural pathways linking the cerebellum with the cerebral motor cortex (which sends information to the muscles causing them to move) and the spinocerebellar tract (which provides proprioceptive feedback on the position of the body in space). The cerebellum integrates these pathways, like a train conductor, using the constant feedback on body position to fine-tune motor movements.

Because of this 'updating' function of the cerebellum, lesions within it are not so debilitating as to cause paralysis, but rather present as feedback deficits resulting in disorders in fine movement, equilibrium, posture, and motor learning. Initial observations by physiologists during the 18th century indicated that patients with cerebellar damage show problems with motor coordination and movement. Research into cerebellar function during the early to mid 19th century was done via lesion and ablation studies in animals. Research physiologists noted that such lesions led to animals with strange movements, awkward gait, and muscular weakness. These observations and studies led to the conclusion that the cerebellum was a motor control structure.[1] However, modern research shows that the cerebellum has a broader role in a number of key cognitive functions, including attention and the processing of language, music, and other sensory temporal stimuli. -- Wikipedia


So this new information changes her probable outcome. Where we used to be pushing for a fairly normal integration into school we are now looking at lifelong problems with her motor skills and balance. There are aides that can be used for her to walk more normally but I don't know if she will ever walk like a typical person. That part is hard to take as a mother. Because Abby has surpassed the doctors expectations I fully anticipate that she is going to shatter what they are telling us she can achieve. The kid doesn't exactly like to listen to what the doctors have to say.

On top of the gross motor issues she is delayed in her fine motor skills and has the same sensory issues as Gracie (these problems are very common in twins).

So we have our work cut out for us. Three separate therapists a week on top of our crazy schedule. Should be interesting.

3 comments:

Nichole 12:06 PM  

Kristen - My thoughts are with you... I know it's easier said than done but your girls need you to be their rock so make sure you take care of yourself too... *HUGS*

Christina 7:01 PM  

Good luck with the girls. You are an awesome Mommy, and I hope we will get through our struggles as well as you are handling yours. Thank you so much for being there for us!

MrsSpock 6:57 PM  

Even though no doubt you guys can handle this- and the girls will still become awesome women- it is still rough to hear "the experts" paint a picture no parent wants to hear.

There is a great book written by a local woman about her son, who has similar feelings: His Name Is Joel. http://www.amazon.com/His-Name-Joel-Searching-Disability/dp/1578950341

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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