I am having one of those days - where I ask myself - why us? I have been trying to stay positive the whole time while I am away from family - but today I am a bit down -
I watch Brextin during therapy and just wish my son didn't have to be taught how to catch himself as he tips over, or how to roll over, or how to reach for an item mid-line, etc - It all has just got me down today - so I am actually away from him right now so I can have some alone time - it is very sad not knowing the outcome of our son - will he be able to walk alone, will he be able to feed himself, will he ever reach out for me for a hug or comfort - a ton of questions of the unknown start to pop in my mind and it all becomes over whelming.
Both dives went well today - I did find the courage to ask the hyperbaric center - why were being charged $1500 more than 4 other families that I have talked to at the center - and their defense was that additional grants are provided for families that are from different cities, countries, states, diagnoses, etc - blah blah blah - however, I have learned a valuable lesson - it does pay to look around for best deal when it comes to receiving oxygen therapy - I strongly feel the reason why I am being billed more is that I decided to receive OT, ST, and PT therapy at the center in which they are suing for leaving their building abruptly. I myself have been VERY pleased with Communication Innovations for providing therapy to Brextin - and currently the oxygen center is not even offering therapy services - so I am for sure glad that I did seek out the other therapy center. I have been very pleased!
During our vacation with my parents and my husband - not one member mentioned any significant improvements - I do think he has become more verbal - lately he is having troubles eating which is also making me depressed - it has been taking me over 1 hour to feed him 7 ounces of liquid and one jar of baby food - he keeps moving his head side to side and often spitting it out at me - (I think this is because he is exploring his tongue) whatever it is - it is making my blood bubble!
I even tried water instead of his rice milk - all he does is pool the liquid in his mouth and then it slowly seeps out the sides - why why why - I just wish I could get him to open his mouth and swallow without any problems -
The rep from Ottobach (he is who we got Brextin's wheelchair from) was here today to show us some gait trainers (currently we have Elijah's) and he will be bringing some attachments so we can try to get Brex to walk - here is their website http://www.ottobock.com/cps/rde/xchg/ob_com_en/hs.xsl/1391.html?id=teaser2#teaser2 we have tried a sling seat (since it is tough to get him to stand) - but he relies on the seat to often - and all he wants to do is bounce - so we are looking into hip supports instead.
My cousin Andrea just called and we plan on connecting tomorrow night for dinner - which will be nice to actually have a night out - and not have a frozen dinner.
I am glad that I was able to update his blog right now - so when I do get him in a couple of minutes - I can actually relax and not update the blog - sometimes I can be on the computer for 2 hours after I get home and the time slips away. I better get going to pick up the little guy -
Please continue to pray for success and strength for both of us.
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