Wednesday, June 30, 2010

Peg tube mishap and Jacob's vision

Since the passed week has been rough and I felt like crap this morning and I was alone, I decided I was not going to fight Jacob to eat.....

So, thinking I have everything all under control this morning I have Jacob hooked up to his tube feed. I have his baby food in the feeder bottle and his pills on a spoon sitting on the coffee table. Andrew is all set up eating his breakfast with his sippy cup. Jacob informs me with a gag that he does not want to eat baby food. I leave the room and go into this kitchen to make a 2oz bottle of formula to give Jacob his pills. (Yes I was to lazy to crush them and given them through the peg tube as well) Not 2 minutes later I walk back in to the living room to find Ava crawling on the floor telling me "mommy I can't fine them." The "them" she was referring to was Jacob's pills. She had either tried to give them to him, or tipped them over on accident into the carpet of no return. Tiny little pills are not easily found in a thick dark shag area rug. During this matter of the missing pills I look down to notice the end of the tube that should be connected to Jacob pumping formula into the carpet. I then look at Jacob. The next thought is SHIT!!!! All the formula I had already given him and stomach content was pouring from the peg tube into his seat and down the front of the highchair! EWWWW! I quickly clamp it, clean up the mess, and hook him back up. I found 4 of the 6 pieces of his pills. As I think I have everything back under control. I sit down to relax and Andrew decides to throw his cup. Of course the cup can not just bounce on the ground, but the nipple comes out and there goes his formula all over the carpet. (The carpet was def not having a good morning). Finally the kids were fed and they were put down for nap time by 2. I spent the day cleaning and going through the 100 or so bottles I have including the breast milk storage bottles. This consumed a big part of my day. I attempted to make a roast...needless to say attempt is the key word. The thing was so dry and over cooked the dogs did not want it. Wendy's it was for dinner.

Jack is sick, so he has not helped at all today. Ava is so darn cute, but extra moody. My sister stopped by earlier and for some reason when we are together the crudeness comes out. Ava is the lovely 3 year old that likes to repeat everything she know she should not. I don't really like the saying "Do as I say not as I do" so I have a hard time punishing Ava for saying "bad words" when I should not say them either. Anyways back to the point. My sister and I are carrying on a conversation and the "f word" is our favorite adjective Oh my sister was nice enough to watch the kids for a few while I went to the UPS store to get a box to ship some stuff I sold on ebay. I brought back McDonalds. Back to the point once more. Ava goes. "Mommy. Mommy. MOMMY!" I continue to ignore her at this point because I was talking to Tricia. Then she goes "Mommy, I need a fucking napkin!" I stop mid sentence with Tricia and Ava starts to laugh. I'm so shocked I had no words and couldn't make myself yell at her and I was trying not to laugh. Anyways we had the conversation which we have had about "asshole" previously. That mommy and daddy should not say bad words and neither should Ava. They are NO NOs! This obviously flew over her head, because tonight after Jack came home from work Ava decided to say another No No. She was asleep on the couch without a diaper and apparently peed on her blanket she carries around. She tried to climb onto Jack's lap with her pee blanket and Jack tell her. "Ava you pissed on your blanket. Go take your piss blanket to the washing machine." Ava come up to me while I am feeding Jacob and demand I open the laundry room door. "Mommy I got to throw my piss blanket in the washing machine. I tell her say pee pee not piss and she informs me "No mommy I pissed on that blanket."

My nose is all dry and crusty. It looks so nasty. I have a huge scab all over the top and underneath of my nose and my bottom lip still. Life is getting better. Oh I have one more update...

Jacob and Andrew went to the eye doctor on Monday. Andrew's eyes are fine he does not have to see her again until he is 3. I told her how I think Jacob see better when thing are farther from him. She looked at his eyes and said everything appears to be normal structure wise, but she believes he has cortical visual impairment. One more diagnoses to add to his list.....

What I learned:

 Presently, Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. Fixation and following, even to intense stimulation, may be poor and the child does not respond normally to people's faces. Visual regard and reaching (in the child with motor capabilities) toward objects is absent.

Causes of CVI

It is now widely accepted that "cortical blindness" is not an appropriate diagnostic term for children with early, acquired visual impairment due to non-ocular causes (4). The term "cortical" is misleading because the visual impairment is due to abnormality of bilateral. post-chiahydrocephalus shunt failure, se smal visual pathways, including damage to cortical (gray matter), subcortical (white matter) or both. Non-anatomical lesions, for example, seizures, metabolic derangements, also can cause CVI.

Thus, "cerebral visual impairment" is preferred to "cortical blindness." Common causes CVI in infants and young children include hypoxic ischemic encephalopathy (HIE) (in the term born infant), periventricular leukomalacia (PVL) (in the preterm infant), traumatic brain injury due to shaken baby syndrome and accidental head injuries, neonatal hypoglycemia, infections (e.g. viral meningitis), vere epilepsy, and metabolic disorders

What is to be done about this. We simply add another therapy to the list and hope for the best. I am currently waiting for Orlando/ Central Florida office to get back with me about Vision Therapy. I really think this is it. I am going to day it will be before 1am :-)

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