Thursday, July 19, 2012


What a few weeks it's been. I will work backwards from how I normally update!  :)

Emily ~ She's doing pretty good.  She's busy with violin.  She has lessons each week and she practices daily.  You can really hear the improvements when she plays and her teacher has commented on them as well.  She is still going to counseling and had an evaluation yesterday.  They are going to begin some basic testing as well as started her on a small dose of a med to see if that helps a touch.  She has been getting together with a friend in the neighborhood often lately and has had alot of fun getting to know her.  She is looking forward to starting 6th grade soon and continuing her time in strings.

Jace ~ He has been on his new meds for about 2 weeks now.  They have made him incredibly tired during the day and he's struggling to sleep some during the night.  He's had 1 upset stomach day, but so far doesn't seem as though he's had alot of GI changes.  He's definitely been calmer and hasn't had as many extreme moods, or violent behaviors.  He's been inside alot over these last few weeks as his body adjusts.  He's still been out some playing with friends and is still enjoying his electronics and such.

Benjamin ~ He's a month into his new meds and the doc is leaving him on this dose until we meet with her next week to figure out if there are any changes she wants to make.  It's helped a bit, but he's still struggling with some issues.  He's enjoying spending time with his new respite worker and they've been out exploring some new activities in the area.  He's also continued swimming alot, as he says he's a fish and it's his favorite thing to do.  He's also been learning how to make paper airplanes and has really enjoyed that as well.

Ariana ~ She's been busy playing with her neighbor friends and learning to ride her bike.  She's doing well with the training wheels and can get back and forth on our street.  She's super excited for the start of kindergarten and asks every day when it's time for school.  We are considering cutting her hair a little bit before school, but she's not so sure.  Currently her hair is at her lower back, close to her waistband on her pants. 

Elias ~ He's like alwasy my incredibly busy man.  We got past surgery recovery and he finally leveled out on his weight.  We left on July 5th to head to Wichita for vacation.  It was me, the 5 kids, and Eli's nurse.  We had been there for 15 minutes when my dad came home from work.  The kids and I were all standing at the garage door and Eli was waving to grandpa.  Between his balance issues and his problems with seeing he lost balance and stepped right out of the house and fell down the concrete garage step.  He wouldn't stand on his leg so we finally made the choice to go into the local ER there.  He wasn't crying and they stated that kids cry if they break something.  So they took an xray of his foot while he was in his wheelchair and sent us home.  The next day he still refused to toe touch and was in pain if we touched his foot or leg.  I called his old pediatrician and she got us right in.  They xrayed his leg from hip to toe.  Sure enough his tibia was broken.  They casted him there and told us to see his orthopedic surgeon the next week.  By Saturday Eli had a high fever and napped for over 4 hrs.  We ended up coming home early.  We met with his medically complex doc on Monday and discussed quality of life.  Eli's struggling to keep his body temp and hydration under control.  The more fluids the more his GI system is struggling, which makes him even more dehydrated.  We discussed moving forward with placing permanent access.  His doc is talking with his cardiologist and hematologist for permission to move forward with this process.  He scheduled us with Eli's orthopedic surgeon for that Wednesday.  On Tuesday Eli woke up covered in blisters and rash and his cast leg was so swollen that his toe was gray.  Called the orthopedic clinic and they had us come right in.  They cut the cast and placed a walking boot.  The PA thought it was a staph infection so she sent us to the ER.  The ER said it was Hand, Foot and mouth disease and sent us home.  We met with the orthopedic surgeon the next day.  She said that not only did Eli fracture his tibia but also his foot.  She left him in the walking cast until the blisters went away.  He will re-check in with her on the 10th of august.  So since then he did get his cast put back on.  It's a waterproof cast that allows him to swim and bathe.  He is able to weight bear now and is slowly walking thru the house.  The rash is almost all gone.  We are still waiting for everyone's decisions on the access for Eli.  He also got fitted for his new glasses and they will be in next week.  We met with the audiologist this week as well and they fit him for new ear molds.  We may need to make some hearing aid changes as well depending on how it goes.  Today we meet with the neurologist.  I'm always a bit leary about this appointment.  We will see how it goes.

General ~ Our household has again grown.  Tebow now has a playmate.  Her name is Tibby.  She's a purebred mini aussie, just like Tebow.  She's only 9 months old, so a bit younger.  We also got a bird.  He's a zebra finch, the kids named him Hopkins.  Lastly Mr Eli will be getting his puppy in 3 1/2 more weeks.  She is currently only 4 1/2 wks old.  Her name will be Ophelia and she is a great pyrenees.  She will go thru training with Eli to be his "helper puppy".  Ophelia and Eli picked each other out!  Our household is busy and the kids are loving having their animals.  We don't regret it at all!

I will get more updates up soon.  This weekend we are going out of town but will update next week.

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