Tuesday, April 3, 2012

April Already

Wow.  Like always time is flying.  We've been so darned busy there has been hardly any time to get on the computer.  I've been very behind with blogging, Facebook, and pinterest....and honestly I'm as happy as could be.

Emily ~ She's doing pretty good.  Her grades are great, again making principals honor roll with all A's.  She's staying busy with choir and violin and still really enjoying both.  She's been working hard on making some friends and has enjoyed playing outside and riding her bike lately, or walking Tebow.  She's been reading alot as well and seems to be rekindling her love of books.  We are hoping that she continues this much better mood and finishes out the year strong.

Jace ~ He's ok.  His meds had an issue on refill and we definitely saw a huge shift in his behavior and moods.  Hoping it all levels quickly.  He's doing decent with school.  He's working hard on his handwriting and slowing down a bit on his work so it's readable and correct.  He is finishing up all of his state assessment as well.  this was his first year to do them out loud with his speech therapist and it really seems to have helped.  We are looking forward to getting the results.  He got a brand new trickster stunt bike and has spent every waking moment outside with the neighborhood kids riding his bike.  He loves it!  He's already getting his dark tan and stronger freckles that will last all summer.

Benjamin ~ Ben is really changing lately.  He's had alot of changes at school and they seem to be helping.  They are having him do alot of sensory activities, including heavy work.  He's sitting on a special cushion, pushes the teacher around in her chair, walks thru the hallway, carries a heavy tote full of books, does jumping jacks, wraps up in a pillow, and they are looking into him using a weighted vest or a lap pad.  His teacher said they really seem to help and she's even been able to use some as a reward if he gets his work done.  At home he's done really well with Brian, his respite worker.  They get homework done and then head outdoors.  Ben is loving riding his bike and enjoys going all over the neighborhood.  They also explore the "secret" walking paths and the creek that runs thru our neighborhood.  Ben also had 2 separate play dates this past weekend with 2 friends from his class.  Academically he is still doing really well.

Ariana ~ She's doing well academically and socially.  Still alot of speech concerns and OT issues that we are working with the school to address.  She will get these services thru the school and potentially some extras from CMH, our local children's hospital.  Like always she loves school and has been making lots of friends.  She can now write her entire name as well as sign it without any prompting!  She got her first big girl bike a few weeks ago and is loving riding up and down our street.  She's hasn't tried her first walk yet, but she's not far.  She spends alot of time in the backyard playing with Tebow.  Her meds seem to be working well, and that really helps as she isn't having to run to the bathroom 20 times a day any more.  She meets back with her kidney doctor next month.

Elias ~ He's my little man.  He was doing really well.  After he was diagnosed with a severe adrenal insufficiency and started on all of his new meds it seemed like things had leveled well.  Next thing we knew though his sugars were dumping again and we were back to doing rescue boluses.  Then he became horribly constipated (2 movements in 2 1/2 wks).  He went into his new GI and they did xrays.  He was completely backed up.  The GI is concerned that between his gastric motility and the Mito that this is something we really need to get a handle on.  He has cancelled all surgeries and procedures until this is better under control.  He did a 3 day clean out, which of course resulted in some dehydration and sugar issues.  Now we are on 1/2 doses of miralax 2 times a day, plus dulcolax suppositories every 2 days if no movement.  He also spoke with Eli's geneticist and they discussed their concerns with Eli's sugars.  Apparently with the Mito and adrenal issues Eli's sugars will forever be on this roller coaster.  The geneticist says ultimately there is nothing we can do, but try and support him as best as we can.  Everyone is in agreement that there is no fixing it and our only goal is to try and stay in the stable point and keep Eli safe.  Like always not what we want to hear.  Eli ended up getting an eye infection, followed by his body's lovely response of a rash all over his arms and shoulders.  Now 3 days later he has bruises popping up all over his extremities.  His doctor and I have spent alot of time emailing and sending pics and orders back and forth.  We are hoping soon to get back to a stable point as we LOVE the Eli we get during those times.  He is becoming so animated and lively and we cherish those times.  He is working harder and harder to master his walker and can get around pretty well with it.  He's signing 15 words now, and can understand even more.  He's finally starting to do a crude pincher grasp and is so proud of himself when he plays peek-a-boo on his own!  He's learned how to go out the doggy door and loves "sneaking out" and playing on the back deck.  He can crawl up the stairs all by himself and is working hard on getting back down them.  So many advancements during our stable times!

The kids are at the end of the school year.  Ariana has kindergarten rounded later this week, and all of the kids are going to open house at their new school next year.  Next year will be our only year to have all 4 of our kids in the same school, as it's Emily's last year (6th grade) at the elementary school.  We will miss their school this year as it's in our neighborhood, only 2 blocks from our house.  Luckily their new school isn't far, but not walking distance anymore.  Our kids are a bit sad, but glad that their classmates are all going with them, as well as most of the teachers.  The schools have had alot of joint activities for the kids to all get to know each other, and a few more are coming up as well before the big merger.  We are curious to see who ends up buying the school here that is closing.  Our guess is a church.

Bob and I are doing well.  We've been busy as could be with the kids, and the house.  I've been working on some pinterest projects, I've read some books, gotten thru multiple knitting and sewing projects, gone to a fundraiser, been out with friends, been on numerous dates nights just the 2 of us, and a double date with some friends of ours, walks once maybe twice a day, some workouts, and even a 6 day vacation to Wichita over spring break.  We also headed to the zoo, a movie (The Lorax), and the Money Museum at the KC Federal Reserve.  We have been enjoying this mild weather outdoors where we can spend time as a family, all 7 of us!  In my free time I've also maintained all of Eli's medical files, organized all the kids papers from this school year, organized all of our household info and papers, done Ben's newest paperwork for his MR/DD waiver, met Eli's new case manager for the TA waiver, hired a 2nd nursing agency, interviewed for/hired/trained a new nurse, interviewed/hired/trained Ben's respite worker, been to 2 IEP meetings, 3 parent/teacher conferences, and who knows how many other things.  It's been busy but good and satisfying.

This coming weekend my parents are coming up for spring break and we will celebrate my birthday (April 21st) early with them.  We are going to go out as a family for dinner on Saturday evening, although I haven't picked where yet.  The kids are excited for church Sunday and the big Easter egg hunt between services with all of their friends.  We have officially decided to join our church (Unitarian Universalist Church) that we've been visiting for the last few months, and the kids are super excited about that as they love it there!

Other than that it's just same old same old.  I promise to try to get on more often and update.  My goal is to get back to 3 times a week.  No matter if I have time or not to get on here know that I'm always open to emails, texts, calls, or skype!  My goal this weekend is to get some good pics of the kiddos so I will get those posted by Monday!

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