Tuesday, February 21, 2012

Fast Check IN

Wow.  This is one of my longest gaps in updating.  Things were good with Eli and horrible with Ben.  My focus and energy had dramatically shifted and I simply didn't have the time or the energy to get to updating.
Ben has been a disaster.  He's been struggling in school alot as well as his struggles at home.  His teacher is struggling to keep him involved in the classroom and on task with his work.  He has been beyond hyper and stimming or sound asleep on the floor.  We can't seem to get alot of in between time.  He has also been struggling alot with physical boundaries and has had to be frequently separated from multiple kids in his class.  We are trying to get in touch with his doctor to figure out what needs to be changed or adjusted with his meds or his behavior plan.  Ben had a new in home respite worker start yesterday and they seem to be doing well together.  He joins Ben after school and helps him with his school work and reading.  They play for a bit, work thru dinner, and then have some more reading time before bed.  On the weekends they will go on some outings in the community.

Eli had some decent weeks.  We had been able to come off of his full time O2, only using it for all naps and nights.  He has learned how to walk well with his walker and is able to move thru the house with it with help.  He's also doing well walking with only holding onto 1 adult hand.  This is a huge improvement over where we were.  He has learned another new sign, "help" and has been using it very often.  On Sunday we took Eli out to church and then out to a store, and then 1 more store later in the evening.  By that evening his sugars were horrible, and come bed time he was struggling with his O2.  We are on his 3rd day of trying to re-coop from going out.  We have a call into his Geneticist trying to figure out what we need to do differently.  It's not fair to Eli to never be able to leave the house.  We are hoping he can help figure out a better plan.

Today was Ariana's hearing and speech evaluation.  We have had constant concerns about how hard she is for us and others to understand.  Her teacher has voiced concerns about understanding her in the classroom as well.  She failed the OEM on the left side, but over-all she passed all of her hearing tests.  Then we moved onto speech.  They agreed that she has no problems with language, vocabulary, and her understanding of what we say.  However she has a moderate to severe Articulation - Phonology Disorder.  Ari ranked as a 2 yr old, and she is 5 yrs old.   She has recommended aggressive speech therapy for a minimum of 45 minutes a week.  The speech pathologist is sending all of her paperwork to the school district and she will be put on the waiting list for speech therapy in the hospital as well.  We are still waiting on her OT evaluation.

We are working our way thru training another nurse.  Today is his first day and he is doing well so far.  Eli's next surgery is fast approaching and I'm so not ready to do this again.  We haven't even gotten his blood sugars or weight re-stabilized and we are getting ready to head into another major surgery on March 6th.
Gotta run and help get Eli to bed!
I will update more in the next few days with pics!

Monday, February 6, 2012

Quick Updates

It's been a long day.
Eli's new nutritionist called.  She has been working with Eli's Geneticist/Mito doc, as well a specialized GI.  They have been discussing all of Eli's blood sugar and feeding issues.  They are concerned that he's impacted and are ordering a KUB.  Then they are wanting to work out a plan for dealing with bowel issues.  Next they are wanting to increase his fluids by another 80ml's a day because of the increased calories from the cornstarch.  Right now Eli's free water is at 273ml's a day, and that's on top of his 975ml's of elecare a day.  So if we add another 80 ml's that's 353ml's of water for a total of 1328 ml's a day of fluid.   That's 44.26 oz a day.  Mind you I would need to do the 353 ml's of free water during 4 hrs off the pump.  She's taking away his 1/2 hr extra off the pump and putting it back to calories.  That's the end of the line.  The 4 hrs he's off the pump (2 in the morning and 2 in the evening) are required to get medication done that can't be during a feed.  After his surgery they have also decided that they want to change his formula.  They want him on a more complete protein formula.  She wants to switch him over to peptamen jr w/fiber.  Apparently this is normally only used for G tube feedings but they think by adding in the fiber it will be a good fit for Eli's J tube.  This change will be made very slowly over time.  We will still need to add in the extra salts, iron, vitamins, and cornstarch.  We are overwhelmed with all of the changes and concerned on how his system will handle this much drastic change.  Working with a J tube, and a system of sensitive as Eli's changes this large can be catastrophic.  In the next few weeks they will be running alot of lab work and preparing a full detailed plan.  In the mean time we will again work to increase his fluids, but we seem to be pretty close to our peak.
Eli's been pretty good.  He's been busy during the day practicing alot with his walker.  He's also been working alot on his signing.  He's learned how to sign "help" and now uses it for everything!  He's been pretty exhausted making for a decent bit of O2 sat drops during nights and naps so the O2 has been very helpful during those times.

Emily is preparing for her all district 5th grade honor choir concert at the end of the week.  She's super excited!  She's been going thru a little bit of a struggle, working to figure out who SHE is and what SHE thinks and feels.  We are confident she will figure it all out!

Jace has been busy as always outdoors.  He spends as much time as possible outside with his friends!

Benjamin has been a disaster.  He stole an Ipod from one of his classmates, and then his teacher caught him with some stolen items in his desk today.  He's back to swiping everything and nothing anyone is saying/doing is making any difference.  He's currently grounded from all electronics and that's a rough one for him.  We are hoping to get our point across!

Ariana is preparing for her 5th bday!  She's having her birthday party this weekend and is planning what colored sprinkles she wants for her cupcakes.  She's still loving school.  She's currently dancing around the living room to pandora!
Ari had her appt with the renal clinic last week.  They did some testing and asked her alot of questions.  They have determined that she has an overactive bladder and that it is causing alot of her issues.  They are going to try her on a medication to help lessen some of the impulses and urges that her bladder is constantly sending.  They will recheck in 3 months and if no change they will begin deeper testing!

As a family we have spent the last 2 sundays checking out a new church in our area, Shawnee Mission UU church.  We have LOVED it!  We all have really enjoyed the services and classes and have met some really neat people.  We all enjoy the openness and accepting atmosphere and are excited to go back next week!

I will update more in the next few days as we get more information and test dates and results!

Thursday, February 2, 2012

Quick General Update

It's been a quiet few days on the doctor front.  We have kept in close contact with Eli's medically complex doc and have spoken with the geneticist's dietitian multiple times but other than that not much.  The dietitian is working hard to come up with the perfect feeding and fluid schedule for Eli.  That's tough to do taking into account all of the issues that are going on with him.  She's not rushing into any changes or decisions so we are patiently waiting for her final recommendations.  Eli is up to 2 teaspoons of cornstarch a day mixed into feeds, and today we will trial out 3 teaspoons.  So far his GI system seems to be handling it a bit better and this morning was one of his highest blood sugars in quite some time.  He has an issue going on with a lymph node in his groin that we are keeping a close eye on.  He also seems to be currently having a flare up of his skin conditions and we are working to keep that under control.
We are laying low this month and allowing his body to rest as much as possible.  As of right now he is rescheduled for surgery on March 6th.  We are hoping to keep life as calm as possible for him between now and then.  Also hoping to get the feeds and fluids and sugars nice and stable by that point as well.
We have just finished up training a nurse and we are currently working to train another nurse.  We are going to end up having to have 3 nurses to get our weeks schedule covered.  They are working to find a 3rd nurse and we will see what we think tomorrow when we possibly meet an option.

The older 4 are doing pretty good.  Emily is staying busy.  She's been hanging out after school with a friend next door and has really enjoyed getting to know her.  She's getting prepared for her honor choir concert next week and she is also making her final selections for her song for the talent show.
Jace has been busy after school with a friend from next door who is also in his class.  They spend almost every afternoon together.
Benjamin has been struggling.  He's apparently been staying up half the night playing his kindle fire and nintendo and as a result of this he's incredibly grouchy and having trouble staying awake at school.  He's gotten into alot of trouble in class, and ended up going to the nurses office yesterday to sleep.  We keep taking his things away and then he just ends up stealing one of the other kids items.  It's a challenge.
Ariana is doing good. She's getting ready for her 5th birthday!  She's super excited to be turning 5 and is happily planning what special treat that she wants to take to school with her.  She's also making her birthday present lists and WOW.  She wants a real live pink puppy, a unicorn with wings, and the perfect dress to marry her king.  :)
Other than that not much new.  I will get some more updates up soon.