Friday, July 23, 2010

Updates on All

Sorry for being so behind on updates. It's been a long slow week and I just haven't felt much up for updates. Quite a bit to update on so I will do the traditional person by person! :)

Eli ~ He's doing his typical gain/lose day. Right now we are on a lose run, BUT we have still gained compared to before. He's right over 13lbs!!!! He's still meeting with PT atleast once a week and we are working on sitting skills, rolling, and hand movements, grasping, etc... He's still hating the oxygen at night and most mornings wakes up with it between his eyeballs, in his mouth, over his head or wherever else he can pull it too! :) We leave for Kansas City on Sunday and he has all of his next kidney testing and his appts with his surgeon all day monday. We are also hoping to get some more answers from the motility specialist while we are there as well. He got all of the tests on CD and is going to try and go thru them all while we are in KC. His feedings have finally been increased and we are hoping that helps hold him over a bit and gets us on a steadier gain path! We are still waiting on the lab results for all of the fat absorption tests.

Ari ~ The little princess is quite the handful. Her tantrums are extensive and her obsessions lately are out of control. My parents had her last weekend and my dad was shocked by the fit she threw. Said she could beat Ben most days hands down! Not like that's a good thing though. She now has her bedroom downstairs in girl world with Emily. It's working out well and she loves having a larger room for all of her girl stuff!

Benjamin ~ He's Ben. We had his next visit this last week with the autism specialist and it was incredibly informative. We have a plan in place and everyone is getting their end of it done. He's going back thru the funding committee for the swing and for in home respite. He's also pushing for a full neurological testing, as he's wondering if he's having seizures. Also IQ testing, and wants to start some meds to see if we can help calm some of the OCD/obsessive behaviors. He says that is a huge problem that may be triggering alot of the rages. He says ultimately we will need to start pushing Ben's rules, but right now Ben isn't in a place to do that. So hoping the meds will allow for that more. He wants to get full picture scheduale in use, and is wanting in home supports for a couple hrs in before and after school to begin implementing all of these things. He wants to start a full sensory diet, and gave ideas of how he wants to get that all set up. Also he's pushing for the swing, so Ben can have that option to help himself relax. He wants us to do play therapy multiple times a day, and attempt to stop STIM behaviors as quickly as possible. Ben starts school in just a few weeks so there is a big push to get alot of this done before school starts. We are finally starting to feel a bit more confident with our team, so are relieved about that!

Jace ~ As we've been working with Ben and having so many of the inhome testing and observation some talk has again resumed about Jace. The hyperactivity and impulsivity is massive and out of control. The attention isn't really an issue, still. It was strongly suggested to try some new meds with Jace and ideas were given. We are super excited for some ideas as we spend most every day at the end of our rope with him. Calls into the doc to get everything started!

Emily ~ She's excited for school to be starting soon. Her allergies have been horrendous this last week or so, and she's been pretty miserable. Call into the doc, hoping to get her started on a new allergy med to help relieve some of the symptoms. As her allergies get worse, her asthma gets worse, making nights rough for her with all of the coughing.

Bob ~ He's doing pretty good. He's off work for 2 weeks right now. Since I'm such a slave driver and make him work so many hrs to support us, I'm now making him not work to stay home and take care of me and the kids while I recover from surgery! :) He's enjoying his 2 weeks off, and having a great time getting to hang out with the kids. He's been working on getting the house organized, and getting some of the little chores done that he's been wanting to get done, but just hasn't had the time. He goes back to work the beginning of August. Then center-wide scheduale changes happen Aug 22nd. We still aren't 100% sure what we think of his new scheduale, only time will tell!

Me ~ I'm ok. Still sore and moving slowly and in small spurts. Still not able to drive as my muscles are still really sore. I'm sooo ready to be completely recovered and for all of this to be behind me. I had no idea that recovery was going to actually be this rough. I figured it would be more like childbirth, up and moving right after. I'm enjoying spending time with everyone, and having some down time to just relax!

I think that mostly covers the udpates for now. Will update this weekend as we have more information from KC and all of that!

1 comment:

Anonymous said...

thank you for the link. it was very helpful and i even found the pattern for the pixie hats that i wanted to make for the kiddos. it very easy to follow, which is what i need right now. i just learned how to crochet and i LOVE it. one of my friends at work showed me how to help with my stress, and it has done wonders. i do it at night to calm down. again thank you. laurin :D