Monday, September 29, 2014

Still in limbo...

So after getting home we realized that we have a lot of decisions to make based on Luke's care.  We are still waiting for the final report from CAMP and can't really do anything until then.  I am a person who likes to make a decision, good, bad, or indifferent, and then deal with the consequences.  I don't like being in limbo.

What are some of the decisions we need to make?  Our current pulmonologist doesn't seem to be willing to work with CAMP on vent settings and we are taking this opportunity to find someone closer to home, we think.  We were at the current pulmonolgist becuase we were going to do the pacemakers through them but now will do them through CAMP as we like their design better.  We generally get along fine with the current pulmonologist and the nutritionist from their office and I actually agree on how I am feeding Luke.  However, they are 4 hours away! and not near any of our parents.  Then, do we decide to switch to a new vent?  This depends on if we are going to try for pacemakers in the next year or less?  Which depends on how thing are going with the new settings and what the final report from CAMP says in follow up and what they think?  We would have to switch medical supply companies to get a different type of vent and if we do that I don't want to go through all the process with our current medical supply company to get some of the new equipment that we will need.  Although I really like my ordering people and the respiratory therapist at our current company.  An one piece of equipment is looking like it will be a fight to get it covered by insurance. And then there is school we are trying to get Luke to...and we are adding a vent to all the other things that are different about him... And it goes on and on...

I am tired, stressed, and have shut down a bit.  I pray that the final report comes tomorrow and we can start really making some informed decisions.  I feel like I haven't been there as much as I should for the kids.  I have been on the phone or e-mailing about this a lot this past week and I just want to be done.  Please pray for wisdom, discernment, patience, and sleep.

On a fun note, we took a spur of the moment trip to the UP wilderness to relax and destress a bit.  I feel the most relaxed surrounded by God's creation and it was good.  Although, I must say that it is not as relaxing with two small children who just didn't appreciate the beauty of waterfalls, brightly colored trees, and being able to see 3 great lakes in the matter of an hour as much as I wanted them to.  I think they did have a good time and enjoyed doing something else for a day.  For me even the drive was beautiful and it was nice to get away.  I have been wanting to make that day trip for a long time as I missed the water and the UP, there is just something that draws me in about the UP.

So what are the kids up to these days?
Luke loves to play 100 Floors and Doors on his iPad while he is being fed.  He still likes letters and playing around with them and spelling different words.  He also likes having you draw things for him.  He has been into having me tell him stories about subject he chooses lately instead of dictating stories to me.  He still likes to read a lot and spends a lot of time babbling on his iPad.  He likes to go outside for walks, although he would like to be doing the riding and not the walking.

Luke has doing okay with wearing the vent all day.  Kevin is making him a new cart for it tomorrow.  Right now it is on a scotter but he isn't great about pushing it around.  He is walking really well by himself when we follow behind with the vent.  And he does walk away from the vent at least once a day forgetting that he has to take it with him.  We are hoping the cart will help him be able to get around more as he can walk with it.

Luke is looking more and more like a little boy every day.  I think he is beautiful and I tell him.  I am not sure what he thinks of that.  I love the haircut Kevin gave him in prep for our time at CAMP and the sleep study and it does help make him more boy and less toddler.  He has also been communicating more with his iPad and with more comments and not questions.  Although, he sometimes refuses to communicate or lately when we don't have the iPad and I ask yes or no questions he will give me both answers.  This very frustrating and I haven't figured out what will motivate him to stop doing it yet.   But I have to remember that even under all that medical equipment he is still just a 5 year old boy.  He can be sweet like honey and a stubborn and a mule but he is so lovable and he still lets me give him lots of kisses.

Hannah is a smart, energetic, and a great pretend player.  She is so fun to just watch play, when she is in the playing mode.  She also tends to wine and cry at small things and want us to help her go potty when 2 hours earlier she did the whole thing all by herself, throwing a fit when we tell her she can do it.  She is attached to her green and blue blankie and is upset when it needs to be washed.  She loves to play with her babies, she has many as somehow all of the ones from when I was a kid plus the ones she has got out at the same time.  She takes them to the pool to swim, to the store, feeds them, puts them to sleep, changes their diapers, and more.  

She is still in the "Why" phase which can be exhausting.  She loves to cuddle and snuggle and give hugs and kisses still which is awesome becuase sometimes Luke will let me kiss him but no hugs he says.  I have to get Luke hugs when by carrying him up and down the stairs a lot of the time.

Hannah is wearing an eye patch to hopefully help her right eye get stronger as glasses are still not correcting it entirely and they are a really strong prescription.  Luke's eyes seemed to have plateaued and neither of them cares when they have filthy glasses.

Kevin and I are hanging in there trying to get things done and do whats best for the kids.  My desk is such a disaster and I just don't have the energy to clean it up and thankfully Hannah has gotten the vibe to stay away as she tends to color on anything that is paper.  We are exhausted a lot of time time and have lists of things that are so long. But we find time to love on our kids and smile and laugh together.  I could use a little more time to do all of these and I am hoping that after making some decisions about Luke's care and getting him off to school next week that there will be more time.

1 comment:

  1. Hi Emily, I so agree with you. Limbo is not a pleasant place to be. I also like to make decisions quickly so that we can get moving on what is next. Patience, is a virtue they say. Sometimes i wonder. You all are in my thoughts and prayers and I pray that all of the changes will be good for your family. Keep writing it helps to settle the mind and feed the soul.
    God Bless.