She's stopped eating much on her own at all.
Annabelle has returned to the habit of taking a bit of food, storing it in her mouth and then spitting it back out before taking another bite. She doesn't chew or swallow anything anymore.
She is having an increasingly harder time taking her feeds orally and not dependent on the pump to deliver her required intake.
She's becoming more uncomfortable and restless at night. While her sleeping spells are definitely getting shorter, she doesn't seem to be gaining actual 'rest' from the times in which she is asleep. She is cranky for the most of the time during the day, she rubs her eyes constantly and needs to stop for a rest between every short spell of playing. I had to drag Belle with me to pickup some things this evening, she walked a short ways and I turned around after taking my eyes off her for a moment and she had pulled a towel from the shelf (bathroom/linens section), laid it on the floor and crawled herself into a ball using the towel as a pillow to try to sleep in the middle if the store floor. (Gross! ... & Sad... )
She's been vomiting a lot more lately and often times without reason that we are able to rationalize. Our house and cars smell like vomit and I don't think it will be leaving anytime soon, no matter how many times we steam clean every inch of upholstery.
The tape on her face is a royal pain and terribly uncomfortable to her skin. I can't find the right method of taping to keep the tube secure without moving and also not tear her skin to pieces. Well figure it out, but I feel so bad for her in the meantime.
On the upside of things, Annabelle is full of energy and attitude. I think she is gearing quickly into the age of two and not leaving a moment of feistiness and attitude behind! She's mesmerized by everything her sister does and is learning so much by following her lead. She loves pretending to be mommy and had a newly found obsession for Mickey Mouse and Winnie the Pooh, I love watching her light up when she sees things she recognizes and enjoys. I adore hearing her attempt to sound out new words, the speech therapist continues to relay the same conclusion after all her sessions "she will not initiate words on her own, she's bright and understands well but the communication is not there for Annabelle, she cannot put two words together and struggles to make a statement longer than broken mumbles and finger pointing." The therapist is wonderful and together we're hopeful that the feeding tube will supply belle with the energy and nutrition to begin learning new things. I believe it will happen soon, Annabelle wants to talk, it's just taking more time...
Hopkins Update
I finally got the phone call today from Hopkins to schedule our follow up with Genetics. Unfortunately, both our insurances are dying the consult and any further testing. Genetic testing is extremely, EXTREMELY expensive and neither company is willing to support us to finding a diagnosis in this route. (They have also been declining past procedures too.. Brain MRI, Chest X-ray, etc).
I spoke with a patient coordinator today and together she will work with genetics and possibly out other teams to determine a better coding method to conduct the testing and consults. She was doubtful it will work though.. Otherwise we will have the option to proceed as a cash paying patient. I can't even begin to fathom what kinda cash that looks like, if insurance is refusing to participate! Dear God something needs to happen soon!!
Tomorrow is my baby girls birthday.. The hours counting down to the time of her birth is filling me with anxiety and joy. I cannot wait to spoil my baby girl tomorrow on her special day. She deserves every bit of it and her big sister and beyond ecstatic to give Annabelle the gift she picked out. :)
Tonight we have many reasons to feel betrayed in life but tonight I am going to bed with a messy house and a humble, blessed heart for all we have. Ill never loose sight if our blessings..
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