Nutrition Update

I forgot to post last week when we saw Bella's nutritionist for her 3 month check up. We were excited the last time we saw Marisa because Bella was finally gaining weight, really really good weight. Before, she was always gaining so slowly or not at all and was on supplements. The supplements were used for 2 reasons for Bella. 1. To improve weight gain. 2. To make sure that she was getting all the nutrients that she needs because she has a limited selection of food that she can eat physically. We stopped the supplements 3 months ago and now we are starting them again.

Unfortunately Bella has lost weight over the last 3 months, a little over a pound to be exact (which is a ton for a child). The good news in this is that so far it has not affected Bella's growth height wise. From what I understand is that growth weight wise can happen very quickly (month or two) and height wise it takes much longer to be affected (several months).

You can tell that Bella has lost some weight, Mike and I were just discussing a week or so before Bella's appointment how skinny she looked when her clothes were off. You can see her ribs and spine.. it makes me want to just let her drink butter all day. J/K that's gross.. but it would fatten her up! Bella has also not been very interested in eating. She eats a few bites and decides that she does not like it or want it. She has always been like this to an extent, but she was eating enough to "keep her weight". Now, she is not.

Marisa is hoping that this is just a funk and that at our next check up in September Bella will be back on track with gaining the appropriate weight!

For now, we continue with Bella's supplements, which is a total nightmare trying to get her to drink. She hates them! We have tried almost every single one out there and we have not found one that she enjoys...yet. We are also trying to plump her up by giving her lots of fatty foods and of course continue to stay on whole milk until we are told otherwise. At Bella's pediatrician check up they will also run some basic blood work to make sure she does not have any vitamin deficiencies due to the weight loss and lack of eating.

On a side note, Mike and I have seen a little bit of improvement in her swallowing!! She is drinking from a sippy cup now everyday for meals and snacks and only has a bottle for bed/nap. She is choking much less than she was 6 months ago. Same with feedings. We are still pretty much on the same foods that we have been on for a while now but I have not had to pull food out of her mouth/throat in about a month now :) Huge improvement from the almost everyday occurrences that were happening before.

It puts a smile on my face when I realize how far Bella has come.. she is such a trooper! I can't imagine my life with out her!!

Bella also got to kick that Apnea Monitor to the curb today!!! We have had it from the day that Bella came home from the hospital and now she is almost 2! I have cried over this thing one too many times, but I am so grateful that we had one. It saved Bella's life on SEVERAL occasions and it gave me a little bit (not much) peace of mind when my eyes were not on that sweet girl to make sure that she was still breathing. Good riddance Apnea Monitor, it's time for you to go watch over another child ;)

A Breakdown Of Bella's Inner Ears

It has been a LONG time since my last post. Way to long. Sometimes I just can't find the words or I don't know what to say. Sometimes I am just tired. Tired of thinking about it, tired of talking about it, tired of worrying... but it's time to explain Bella's ears so that everyone has the opportunity to understand. I really don't know why it has taken me over 6 months to tell everyone what is really wrong with her ears. I think I was secretly hoping that if I don't tell everyone, then maybe one day her ears would be normal and her missing pieces would magically grow back (wishful thinking!)

There has been A LOT that has gone on over the past several months but I am going to start and stay focused on one thing for this post, Bella's ears.

I will start with the medical jargon....
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EXAM: CT of the Temporal Bones

FINDINGS: This patient demonstrates bilaterally symmetric abnormal anatomy.
The external auditory canals are normal. The ossicles are morphologically normal. No middle ear masses.

Facial nerve takes a normal course bilaterally.

The vestibules are bilaterally patulous with absent horizontal semicircular canals bilaterally. Dysmorphic superior and posterior semicircular canals. The vestibular aqueducts are enlarged. Cochlear morphology appears normal.

Midline maxillary incisor is present with findings of pyriform aperture stenosis.
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Now, some of our medical friends may understand all of this, or most of this. For everyone else, let me explain what this all means in the easiest terms I can find.

Your vestibular system is the parts of the inner ear and brain that process the sensory information that controls balance and eye movement- it is a persons core functioning. If it is damaged or diseased it greatly affects how the person feels and how they are able to perform day to day activities!

You have 3 semicircular canals. The horizontal, superior and posterior that are filled with fluid that contain motion sensors. Bella is missing her horizontal canal completely and has malformed posterior and superior canals. (They are only partially formed and not closed). Your semicircular canals are the system that detects rotation. The horizontal canal corresponds to rotation on a vertical axis (spinning) and the posterior and superior with rotation such as nodding.

We know that Bella is greatly affected by her missing canals. She has good days and bad days. Some days she wont look up from the floor while other days she will go a whole day with out us having to constantly repeat ourselves with "Bella, keep your head up" or "where is the sky?". Some days her gait it very wide and others it is 'almost' normal. We take it one day at a time. You never know what is going to set her off and make her dizzy but hopefully one day she will be able to express herself enough to tell us what makes her feel most comfortable.

Bella also has an enlarged vestibular aqueduct (EVAS). To be honest I am not sure of the actual function of this specific aqueduct, but we know that when it is enlarged, like Bella's, it can affect a person's vestibular function as well as their hearing. There is lots of correlation regarding hearing loss throughout childhood and EVAS. The hearing loss can come on suddenly, from any type of head trauma, or slowly over time.

Bella's ENT and Neurologist both told us that she should not play any contact sports in the future and that we need to be extra cautious about any falls or head banging. Oxymoron much?? The first thing I thought was..our child has no vestibular system and we have to avoid her from hitting her head.. I guess you haven't lived with someone who has balance issues, especially one who is just learning to walk! I even asked him, "and how are we supposed to do that?" His response was "I am not sure, I know that will be hard to do". I think the first week after we were given this information Bella hit her head more times that Kallie has in her entire 3 1/2 year life! Mike and I have since decided to not worry about overly obsessing about the head traumas and come to terms with if she looses her hearing because of it then it was all in her plan!

The fact that Bella is missing her vestibular system AND walking/ functioning is a mystery! She is a miracle who is living life as if she just got off the tea cup saucer ride at the fair (constantly spinning and unstable)... Looking at Bella on paper, her therapists and doctors would have told us that this child would not be sitting, standing or walking, but she IS! It is amazing how the body and brain can overcome and adapt while missing such important structures that our bodies are meant to depend on :-)