Friday, February 22, 2013

An update, finally!

So I haven't posted a real update on Luke and our family in quite a while.  So here it goes...

Luke continues to thrive at school and at home.  A couple of weeks ago, around the time of his birthday, he just started doing things, good things developmentally, behaviorally that he hadn't before.  He started exploring the house.  He has been mobile but we didn't have to baby proof the house till Hannah got mobile because Luke just wasn't interested in getting into all the cupboards or what was down the hall there.  Well now he is.  He has been in cupboards, will go exploring under the dinning room table, play with the baby gate, crawl into his own room to play, go up the stairs by himself (we have to really watch him and Hannah now), ect...  It has been awesome!  Plus he has been really working, I mean like 20 minutes at a time, at standing up by himself.  He is doing a pretty good job working at it too.  We are pretty excited about this, obviously.

In December Hannah started to want to hug Luke and at first Luke didn't know what to do with her.  Luke has just learned to hug with his arms and not just put his head up against the person for a hug and a kiss.  Well it didn't take more than a day for Luke to go from head butting her to hug back to hugging her with his arms.  Yesterday, Hannah came up and said "hug" to Luke but he didn't really respond so she moved away. Just as she was moving away he put his arms out to hug her.  I got her back and they hugged.  Very cute.


Health wise Luke struggled with an infection in his post site from his jaw surgery that just wouldn't go away.  We called and got a January 18th surgery date which fortunately got moved up to January 4th.  We found out on Wednesday and had surgery on Friday, it was pretty fast but well worth the running around to make everything work.  We decided to admit Luke overnight since he hasn't had many surgeries and it took him over 24 hours to really come out of his funk from the first jaw surgery.  Normally this is an outpatient surgery.  The bonus was that we would be seeing a new pulmonologist while in the hospital.  Mott's Children's Hospital deals with quite a few patients with hypoventilation, which Luke has, and they are getting a pacemaker program, which we want Luke to have (a diaphram pacemaker that would work in place of his vent).  The pulmonlogist ended up seeing us while in pre-op which made pre-op even more of a circus and Luke even more upset but he got through it and his trach stayed in, thank you God!  After surgery Luke just wanted to to go, well before surgery Luke wanted to go.  However, it got so bad that evening and night that I was in tears on the phone with Kevin (who was trying to get some sleep before he was relieving me).  He just kept looking at me through the crib bars with those eyes like "take me home mama".  After a late night feeding and benedryl dose he finally fell asleep.  He looked like a little chipmunk with puffed up cheeks the next day but was feeling better.  The couldn't get us out till around 2 p.m. and we are on the priority list much to our dismay.  We finally got released and Luke made a speedy recover at home.  We kept him out of school for a week just to make sure he was 100% before going back to school.

One day post surgery #2:

Here are some before and after surgery pictures.
(this is not a great pictures but goes with the side view above)

Then the flu was going around so we kept him home for another week and broke down and got him and Hannah the flu shot!  He was back in school and doing well until this week.  He came down with a runny nose, lots of drool and a fever on Monday and still all this ickyness and it is Friday early morning.  I am praying that tomorrow will be a day on the way up out of the sickness pit.  However, Hannah had a low level fever when I went in to comfort her tonight :(

In the weeks before Christmas Hannah had her first big sickness.  She has a virus so bad she got a rash!  And then she got bronchitis   Poor baby.  She was feeling well enough to enjoy presents and the festivities though.  Although the glow stick was not distraction enough for me to hold onto a real candle during Christmas Eve service.  I may join the kids with glow sticks for the next few years.

January and February have been rough in terms of nursing.  We had many many nights without nursing and my sleep has been not that great.  Last week we had our first week with full nursing in a long while and it was great.  I forgot how productive I could be and how well my brain works on decent sleep.  I have been trying to adopt some of the principals in the Sanity Manifesto of my last post.  I realized that I need more routine in my life to get things done and to be more present with the kids because I know there are times in my day to get chores and other things done.  I have tried scheduling chores before and liked it and decided to go for it again.  I pick a chore that is ~30 minutes (some are more some less) for every weekday.  I leave Saturday for organizing something or a cleaning project that doesn't need done every week.  And I did it.  This week I got through Monday and Luke got sick and I got a little sick.  However, I did catch up and do the floors tonight :)  I felt and feel great about it.  My goal is to get up earlier, after going to bed earlier, and have devotional time, then workout before I need to be going for the day.  It happened once so far and I felt great that day.  My trick is getting to bed on time.

So back to nursing.  Well in the mist of the nights of no nursing my current nursing company got a call from Medicaid saying they were not going to pay them as much, by a lot per hour.  There was a mistake in the system and they were changing it reflect the fee schedule for the service.  My company was all up in arms and said if it couldn't be resolved so that they would get more money they would drop me.  This involved almost 2 weeks of being on the phone, and not playing with my kids, something I really don't like, to finally figure out what was going on.  I found out Medicaid was right there is a fee schedule for private duty nursing and they were getting paid way above it. I am not surprised by Medicaid's actions.  However, this is the second time my company has been surprised by Medicaid.  Ahhhh!  So while working to find out what was going on I was also trying to see if some other nursing company could possibly take me.  And my 3 day a week nurse was leaving to move down state.  Well one of the two nursing companies said they could work on hiring people and it was doable.  Awesome.  Their billing department, who I called to make sure my insurance would work (Luke has been on the same insurance since he started with the current nursing company but they hadn't looked anything up to make sure they would get paid and what they were getting paid and I was not making that mistake again if I could help it), helped me to figure out what was going on with Medicaid.  Because you can talk to all sorts of Medicaid people but the billers won't talk to you unless you are providing the service.  So frustrating! I do have the name and e-mail of the lady that finally helped me.  So tomorrow is the official start of our new nursing company!!!!  This new company couldn't staff me 4 years ago and I am grateful that the old company could and we got out of the hospital.  I am excited for this new company they had many private duty cases like Luke's.  This means that we will get full coverage more often when things like the last month and a half happen.

On to better topics... Hannah is also developing in leaps and bounds.  She is talking, lots of talking.  It is very cute and she says a lot of things, even puts words together.  I haven't counted all the things yet but she is pretty vocal and like to learn new words.  She is signing almost as much as she is talking and I think there are some words she just signs but she signs and talks most of the words she knows.  She is running and climbing and getting into things we never thought she would or could get into.  Typical toddler.  We were spoiled with Luke, but he seems to be picking up the pace.  This week Hannah really got into her baby, which is a cute toddler looking doll that my parents got her for Christmas.  She calls anyone that is under 10 a baby I think, and she loves babies under 1 the best.  She also likes cars and building with blocks.  She has been getting creative and enjoying playing with play doh, coloring, and painting.  

We got the kids a dollhouse for Christmas and they both really like it and all the little furniture pieces and people.  Luke's favorite were the chairs till he got a kitchen with doors that open for his birthday.  We were hoping this would help Luke with his imaginative play and it seems to be doing well (Hannah has no problems in that area).  Hannah's favorite is the baby and putting people to sleep.  They both really like putting people to sleep.  This dollhouse comes apart and you can rearrange the rooms themselves and not just the furniture which is pretty nifty and Hannah finds almost as much fun as I do. ;)

Oh, Luke's newest interest is in measuring tools and trying to measure stuff with them.  It started with the play square he has on his tool bench.  (He got it last year for his birthday and is just this past few weeks interested in it) and then we brought him a yard stick which he loves.  I work with him to measure the dollhouse furniture but he is more interested in measuring peoples arms.

Luke's favorite book right now is one about snakes.  It does have a page with a ruler on it, which of course is his favorite page.  Hannah's favorite book is "Yummy, yucky" and she likes to say "yucky" and "no, no, no" when we come to the page about crayons being yucky because she has been found eating too many crayons and mommy saying "no, no, no".   You never realize the things you say and the weird noises you make as you mumble to yourself until you have a toddler. :)

We had a great 10 ft tree this Christmas, well from the end of November till mid January.  Everyone loved it.  Kevin took the initiative and cut it out of the back yard.  I would not have thought to bother with it but I am so glad Kevin did.  It was well worth it.  I loved to just look at it lit up and so did the kids.  It was beautiful.

Luke has a sleep study and visit with the new pulmonology team in March that I am looking forward to (and considering keeping at home out of the way of most germs until then) hear they have to say about him.  Hopefully I will update you on that visit soon after it happens.


Oh yeah, our house is STILL for sale.  If you know of anyone who wants a great move in ready vacation home by great ski hills, snowmobiling trails, Lake Michigan and other large inland lakes please let us know.

Prayer requests:
That the house would sell soon
Luke to no longer have central sleep apnea and hypoventilation
Luke to be a candidate for a diaphragm pacemaker till the above happens.
Luke to be healthy for the March sleep study.

Luke is doing tons of new things!
We have a house to keep us warm and dry.
Kevin got a job promotion!
Selling Thirty-One bags is going well both for a way to get out of the house and a way to make a little extra money.
Hannah is doing lots of new things!
Having cute kids and a great husband!

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