WELL, here we are, 58 days since Jessicas Journey began. (quick note: I realize this isnt a blog and I may write more personal info than I should (because I am writing what I am thinking and seeing and living) but its easier for me to post on my personal page and then just copy it to her Prayer page. I try not to reveal too much information for her privacy and protection along with pictures so I hope you all understand. These are my thoughts and perceptions and a glimpse at whats going on thru my eyes and may differ from the rest of OUR families. I speak only for myself as everyone can update as they would like. Her Prayer Page was started for me as a public forum to reach those friends and families not in my friend list so that other moderators could post for me. Ok. Here we go. Since Jessicas arrival September 24th she has had several things going on. The main thing was trying to find the cause for her seizures, which we still cannot pinpoint due to the many different factors and symptoms she had. During the various MRIs, CTs and EEGs we were told she had brain swelling known as PRES (reversible encephalathapy). She was getting treatment for that when a few days later we found out she had more swelling. We do not know the cause other than it may have already been there but did not present itself yet. So last weekend started another round of medication to deal with that. As of yesterday she had a barium swallow test to see if she could upgrade to soft again. The answer is yes, but liquids have to be honey consistency. They have a thickener they can add which makes it thicker. Think of clear gelatin. (last Thursday she was able to have soft food but we believe she had too much too soon which caused her to throw up and nurses/drs went back to NPO. She did not have food or liquids until Saturday night at 9 pm which sent this momma into bear mode. I will not go into all the details on that). So yesterday, Speech therapist, OT and PT, her nurse and myself were all able to feed her and at the same time try to re-train her to see if she sees the spoon, the food, how to hold it and feed herself, get her to make eye contact and follow commands. She puts everything in her mouth and is like a baby bird when you are near her mouth. Because she cannot communicate I believe her fixation was/is almost a primal instinct having been denied food for so long she is almost ravenous. We are also unclear as to her actual vision and exactly what she can or cannot see, distance, clarity and how her brain perceives something. So teaching her to slow down and not shove food in her mouth and that she will have more and repetition will help her. This is where the toys that I was looking for to help with her hand eye coordination and manipulation come in. They had one of those cause and effect toys (turn the knob and it pops open. Push the button and it pops open. Then push the lids down.) PT had her sit on the edge of the bed and would put her hands on each thing and give her instructions. She eventually did a few things. She will also start to follow people with her eyes and look at you. We are still waiting for her to make that connection with us. She likes to grab our hands and play with our rings or bracelets and take them off and put on her... then of course wants to put in her mouth so now she doesnt get them! She is Houdini when it comes to figuring out how to get her mittens off, restraints off and pull something out. Yesterday when her hands were free she pulled her hair up and same pattern as she has always done, reached to her wrist to get her headband and put it into a ponytail. She then curled up and went to sleep. She had a 4 inch trach put in yesterday and she was able to keep it capped. This is the valve that she liked and will talk thru. She hasnt spoken with it as of yet. She has said a few random things when she is agitated or when they have had to re-insert feeding tube. My favorite is when she said Hey Bubba to her nurse. She has also said No Stop Move and I dont know. Im looking forward to seeing her today and see what small progress and miracle she will show us. Watching her play with that toy had me crying!!!! Her tiny little body has been thru so much and to once again just see her first time to stand again (with LOTS of help), sit on the bed (with help) and eat are HUGE miracles. Thank you all again for your non stop prayers!!!!!! We see them and feel them!! XOXO ~MICHELLE, JESSICAS MOM~
Posted on: Wed, 15 Oct 2014 13:01:52 +0000
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