Special Needs Or Not, Bella Is Just Bella

I get a lot of questions about how Bella's life is. What does she do everyday, what is it like to have a child with so many different needs?

Yes, Bella does have different needs than a normal 13 month old child, but Bella is still a typical baby. She does all of the same things that any other baby would do. Sometimes she just needs more assistance.

She loves to play with her big sister, Kallie. She laughs, she cries, she hates strangers, she is sweet, she gets mad, she gets into things, she takes baths and she even eats. Can you believe that?

Two peas in a pod

Yes, we go to several long and exhausting doctors appointments a month and to therapy 3 times a week but that does not mean she is not like other kids.

Every morning Bella wakes up and eats breakfast. We are still working really hard on trying to eat 'table foods' so I always start her out with that. Usually mini pancakes that I tear up really small. After we try a few bites of those I can tell if it is going to be a successful table food day or not. Lately it has not been, so we revert back to baby food for the rest of that meal and try again at lunch.

We know that Bella has swallowing difficulties, but we are not sure why she is having so much trouble transitioning from baby foods to table foods. She chokes and gags on almost anything besides cheese. She will choke so much that she actually makes herself throw up. Its lovely and yes, everyone stares at her when we are out to eat.

Bella also has not transitioned to a sippy cup. We still try everyday, but I only do it for so long because I don't want her to end up rejecting it or associating fear with it. She chokes on anything that comes out of a sippy cup. We have tried every sippy cup known to man, and she still has issues with it. She is still only comfortable with a bottle and a stage 1 nipple. A stage 1 nipple is usually used until 3 months of age, Bella is over 13 months old.

Bella has had two swallow tests, one before her surgery in December and one after. Both did not have great outcomes, but were not terrible. She did penetrate the lungs (not aspirate) and has some odd pooling in the back of her throat before she actually swallows.

After Bella's second swallow test, her pulmonologist suggested using a thickener. She has been on Simply Thick for a while now. We are supposed to use it in ALL liquids- milk, water, juice, anything that goes in her mouth. It makes it very thick, it's actually called nectar consistency, but she still can not use the sippy cup even with the thickener. We have resorted to using the bottle for her milk and no thickener since she does good with the level 1 nipple. In the sippy cups we add the thickener and let her try a little bit everyday.

Although Bella has some muscle spasticity and high tone, she still plays and crawls like other babies. We just have certain ways that we encourage her to do things. We place toys in strategic places and encourage normal movements, pushing her body to learn to do the movements correctly.

Play Time!

Bella is a very smart girl and she has found alternative ways to go about doing things. If she does not like to stand and scoot along furniture because it is more difficult for her, then she will get down, crawl, and come back up where she wants to be. That would be fine if she could actually perform the task and was just doing it differently as a personal preference, but she is doing that because it is a strain to her. If she does not learn the right way now, it will become more and more difficult the older she gets.

She might have a few things that hold her back but we still go play with friends, go to the park, and she loves to be in the pool!

Kallie loves to be in charge of little sis!

Having a baby with special needs might make our daily life different than an average families, but it does not mean that Bella can't interact normally like other children. She is still a child that loves the same things any other child would. She has no idea that she is different from the kid next to her, and I hope that she never feels that way in her future...