Walking, walking and my energetic one

Luke has been taking steps all byhimself!!!  He does not walk around by himself yet but is walking really well with help.  I only have to hold one of his hands.  He has his good and bad days.  Today was not a great day with walking, he fell a bit and seemed to just want to crawl.  He is doing awesome in his walker at church.  So well that he is now confident enough to run over people's feet so we have to watch him a little closer.  Saturday Luke even tried to take a step towards me, although I happened to only be a step or two away.  This is the first time I have seen him do that.  All his previous walking independently has been done at our request.

Luke in general is doing awesome.  He is exploring more.  We were at my grandparent's house and he was everywhere.  He is exploring more at church.  Today he walked his walker up to the raised area, crawled up the stairs and sat at the top looking at everything.  We have screens on both sides of the front for everyone to see and it was really neat to watch him discover those and discover that they were showing the same thing :)

Hannah likes to put her hands over her face and ask "Where's Hannah?" and then uncovers and says "Boo" or just laughs.  When we were at the psychologist getting evaluated for Autism the physiologist asked Luke to play peek a boo and he was interested in it so so.  He has played it with us in the past but not often but I think after that visit and seeing how much attention Hannah gets he decided it was a good game to play.  He plays it now and will even point at the cloth over his eyes to point out that he is hiding.  Hannah enjoys Luke hiding though which is really fun.

Luke is on the Autism Disorder Spectrum but not glaringly.  We have played around with this idea but not done anything official about it until now.  And I must say I had a hard time with the actual diagnosis.  Luke is still Luke the same little boy before and after and we had considered this and knew he at least had a Sensory Processing Disorder.  But it took me a day or two to get out of my sadness about this.  I don't want Luke to have more challenges in life.  I wish he played pretend with Hannah and communicated with me better.  We are working on things with him through school, therapists, and at home.  It is hard work and to know that it may always be hard work was a little overwhelming to me those first few days.  But we keep on and Luke is just so cute.  He has been giving the greatest hugs lately and letting me give him kisses all over his face.  He let me put on his essential oil mix and do a very tickley Vita Flex technique to his feet when I do it.  He is interacting more with us and I am looking towards the progress now.  He is doing awesome in oral therapy and moving right up the difficulty levels with his jaw exercises.  I can't wait till he gets to preschool this year as he is going to be in a mainstream classroom but with his special education teachers as well as the mainstream ones so it will be a good transition.  I look forward to all the interaction with many kids who don't have social issues.  He is doing well at playgroup still this summer and we have started going to reading time at the library.  Oh and did I mention that the hugs and kisses are great!

Hannah is our commentator on her own and our lives.  She loves Lukey and wants him to wake up from his nap to come play and always likes to be where he is and know what he is doing.  They are sharing okay.  They often share things that the other one does not want at all or at least not at the time, but the effort is there.

Hannah is just a happy go luck little girl most of time.  She loves to be silly and will do things and then say "silly Hannah" or silly whoever she thinks was silly.  She runs and prances around the house.  She is just getting more into books.  As a true child of this generation she is very good at working an iPod/iPhone ect... and can play music, look at "Hannah pictures", take pictures, play games, and get into the programs you would rather she not be into.  She likes playing with dolls and pretend food (and real food too).  Her eating habits leave much to be desired but it is all a phase, isn't it?  She is a happy healthy soon to be 2 year old.

Hannah has a very good vocabulary and talks a lot, at home.  She is breaking out of her shell a little more with other people and when we are out and about, which is nice that other people can hear the fun things she says.  She has her whinny moments and is not a morning person.  However, she seems to be the only one in our family that can tolerate heat and she didn't seem to mind the heat wave a couple of weeks ago too much.  The rest of us were miserable.  She is cute and cuddly and a lot of fun.

My parents have moved 3 hours away which means that we have lost our only other caretakers for Luke.  I haven't really felt this too much but it has only been a month or so.  I do miss them as I love spending time with them and they are busy and we don't travel well due to Luke still needing someone to be awake with him 24/7.

In other news my grandmother is failing.  She has lived a long, good life.  We went to see her this past Saturday and it was really nice to enjoy her company, perhaps for the last time :(  Luke practiced walking for grandma and Hannah flitted around talking and being her little joyful self.  While grandma was napping my grandpa played with the kids and it was awesome to watch the interactions.  The love that flowed both ways was really special to watch.  I am glad we made the trip and the memories.

Life goes on as I try to keep the house somewhat clean, play enough with the kids, and keep everyone fed good food.  I am working to try to work out more and was successful for a week or two.  The heat that came with allergies or colds or something not fun lead to lack of sleep and getting off track.  I do walk more with the kids now that it is summer which is nice.  We are still trying to sell the house and move into town where walking is much easier and just out the door.  My goal is to have prayer/devotional time and workout time every morning.  I am trying to go to bed earlier since most nights I am not productive but I have been lazy and have been reading too much (I think I am addicted to books, I have had to set some hard boundaries for myself that I am still working to stay in).

Another goal is also to have good blocks of focused playtime with the kids everyday.  This sounds easy but when there are a thousand things to do and places to go sometimes we don't get that on the floor zooming cars around time that I need just as much as they do.  I am doing fairly well at this and I can see positive changes in the kids.  They are less clingy, they are more apt to play with toys by themselves nicely (which is huge for Luke and a break for me with Hannah), have a better attitude throughout the day, ect...

So I sat down to write a bit and ended up with all this.  That's another goal to reach for, blogging once a week. :)

Hope for a possibly trach free Luke

It seems I update only when I have nights with no nurses.  Probably it is the only time I feel I can squeeze it in.  I should probably be working on my meal plan and shopping list right now but there are still hours to do that (more about that later).

So wow, it has been awhile.  I though at one point I would do weekly updates, even to just get myself to record what is going on in my kids lives once in awhile.  So maybe this could be the start.

Luke:
On March 6-7 we went down to Mott's Children's Hospital to get a sleep study with their team and to see their Pulmonology team about their thoughts on Luke and the possibility of getting a phrenic nerve pacemaker.  What is that you ask?  Basically it is a pacemaker that stimulates the diaphragm and thus make the lungs inhale and exhale.  It acts as a ventilator internally.  This would be awesome for us as the vent and hopefully his trach would go away.

So how did it go.   Well we got to a room and it was huge!!!!  This was awesome as usually we don't have enough room for our stuff and to move.  Since we would need to be in the room with Luke this was great.  Luke explored by walking around his crib (yep we had the rails way up) until we got him tied down with all the electrodes and things.  He fought getting it all on in true Luke, what I am supposed to have low muscle tone but can push a grown man away, fashion.  We finally got him hooked up and it took him forever to fall asleep.  And then he was leaking which we had been worrying about (and found out that he was just fine with the leak) and would not keep his CO2 monitor on.  He was so greasy from the stuff they used to put the electrodes on that we had a tough time getting the stickers to stick.  We finally cleaned off the largest portion of his forhead we could and hoped for the best.  Shortly after this my shift was over and I got to get some sleep.

Luke started with no oxygen, no vent, nothing.  His CO2 started climbing and between 45 and 50 we put him on the vent.  I was hoping that the CO2 climb was due to his maddness about getting the electrodes on and that he would fall asleep and it would go down but it did not :(  He was on the vent but no oxygen for the rest of the night.  I got back to a ready for the day Luke and we pack muled Luke's stuff (with a wagon too) back to our hotel room so that I could get a bit more sleep before our first appointment.

We saw the jaw surgery resident who said things were looking good.  We saw the dentist who said things were looking good and she was able to get in with much much less fuss that last time.  Good job Luke and dentist lady!

We then went to pulmonolgy.  I was pretty nervous.  Luke has had the same pulmonlogy team from his 2nd month of life.  The doctor and I have learned about each other and were doing well.  I didn't love them but had no qualms with them either (expect for the nutritionist which I am sure I have mentioned before).  I was nervous that they would say he wasn't a pacemaker candidate, that they would say he needed a vent for life. Yeah I know kids amaze us but hearing it still wouldn't be fun.  And then there was a new nutritionist to talk to and most likely get in a heated conversation with due to our "unconventional", we like to feed our kid real food, ways.  And I had not had that much sleep.

However, things went great!!!!!!!!!!!!

In these visits Kevin handles Luke and I handle the talking and taking notes.  I forget things if I have to handle Luke too.  And Luke needs a lot of watching as he is bored and nervous and on an exam table that he likes to lean and look over the edge but doesn't get that he can fall.

The pulmonologist came with with the neurologist that read and analyzed the sleep study.  Yes I said that right the neurologist came too!  The pulmonlogist gave us the results (the neurologist seemed the quiet like to be analyzing data on her own type) and they were positive.  Luke is a candidate for the pacemaker.  They would like to wait a year to do it so that his airway gets bigger and stronger.  The pacemaker stimulates the diaphram and the pressure that it creates as it pulls down can cause the trachea to suck in and become to small for sufficient air to go through.  This would make it necessary for Luke to always have a trach as a trach would hold the airway open.  This was a shock to me and I hope and pray that this will not happen to Luke.  As much as I didn't want to wait a year, I tell myself that waiting a year will help Luke get the trach out.  I am not thinking much about it never coming out.  When I am having a rough day with Luke I think about him being trach free in 2 years.  Yes just 2 years!!!

They confirmed Luke has hypoventilation and central sleep apnea.  They said it is unlikely that he has congentital central hypoventilation syndrome (CCHS) because of how his hypoventilation presented.  Luke's hypoventilation is not severe enough and his CO2 is lower than in CCHS.  Also CCHS patients don't respond like Luke did to interventions.  However, either way it doesn't change the management of Luke's breathing.

Then the nutritionist came in and I had my paper with Luke's diet ready to give her.  I was pretty nervous and I think there was tension as Kevin knew this could be very frustrating to me and I knew it as well.  She asked what Luke ate and I handed her the paper and told her he eats a blenderized diet and was waiting for the backlash.  And then she said that it was great that I was doing a blenderized diet and they were working to get more of their patients on them as there are benefits to reflux and all sorts of things.  I am glad I was sitting down.  Wow!  Awesome!  She asked if I wanted her to run the numbers of my food, not demanded, and I said sure because they hadn't been run in awhile.  I even e-mailed her the info I had on blenderized diets and our experience and some links that she could pass on to others.  Awesome visit!

So all in all I am very happy to be with the team at UofM.  We are still pursing getting an opinion from a hypoventilation expert in Chicago.  They don't have an opening till February.   

So how is Luke otherwise.  He still likes school.  There have been changes and some increased loudness with some other kids that have caused Luke to be more agitated and upset at school but he still likes to go.  He is progressing well.  He is walking with his walker and with us holding his hands better and I am hoping that he will walk by himself this year.  He is also been working on standing up by himself and has been doing it for up to 10 seconds well.  He loves to get the praise of others when he does.

Luke still is enthralled with books and will spend a lot of time reading.  As for toys he probably likes the cars the best.  The parking garage, road mat and cars are his favorite toys to play with.  He does still play with blocks and likes to play with all the furniture in the dollhouse.  He is noticing little spots or marks or pieces of dust on the floor, wall, anything.  So I guess his eyes are doing okay.  We pulled up to the library the other day and I was just going to drop some books off and take the kids to the park.  Oh no, we had to go in.  Luke was signing library as soon as the building came in view and was pointing to the building.  I asked if he wanted to go in or to the park and he wanted to go into the library.  So did Hannah as she likes to play with the toys they have.

Luke has an awesome new wheelchair. We are really excited for it as it sits him up nice and makes him not look so much a baby in a stroller.  He has the ability to move the wheels himself and had moved them a couple of times but is happy to have you push him.  Getting him into the wheelchair for fitting was not a good experience.  It was a hard 5 minutes as he was bent on pulling his trach out to tell us how unhappy he was.  I was almost in tears.  I realized afterwards that he needed to be introduced in the right situation.  We tried to put him in it when he wouldn't have been put in a stroller.  It was at the end of the school day and he usually walks with his walker to the door.  Also I was there and a new person, the guy who ordered and fit the chair for us.  So a couple of days later when we were going for a walk I left Hannah in her seat and took him out and put him in it.  There were some tense moments and him trying to pull the trach but he settled down after a couple of minutes.  It was a beautiful day and with Hannah on my back we went into the library and then for a walk.  The next time I put him in was when were getting out for some air on our trip to Chicago for a wedding and he didn't fuss a bit.  I guess I just need to get smarter about how I introduce things.  I would probably be unhappy too if someone came and interrupted my schedule to put me in a new kind of chair and someone I didn't know came to look at my feet and my legs and how they fit into it.  Even if the wheeles had cool lights on them.  Which they don't anymore as we had to get bigger wheels because I am not one to stay on pavement with Luke.

Luke is also getting more adventurous outside.  The other day he was crawling in the grass which he wouldn't do last summer. And our grass is wet and can be picky.  He was all over and was going down slopes both crawling and scooting down on his but.  He was a typical dirty boy when he was done.  I pointed out a small spider on the shed wall and he was tapping behind it to make it move.  He was pointing out stray garbage in the yard and crawling over and pointing right to it so that I would clean it up.  He crawled over to investigate a tree and got stuck as it was near a slope and asked for help to get out.  He was the explorer of the day.


Hannah:
Wow Hannah is a bundle of energy.  She is running, climbing stairs and other things, she can navigate an iPhone, likes to eat, likes to help me clean, likes to help dad cook, and does not like clothes.  Her favorite thing to do is color and write with crayons, markers, pens, whatever she can get a hold of.  And she needs some direction about what is appropriate to write on.

Hannah loves to go outside.  We got her some rain boots that are really cute and she wore them for a couple of days strait (except for sleeping).  Our backyard is a swamp and so there were plenty of puddles to splash in.  She loves to swing and for as much running as she does in general she will spend most of her time at the park in a swing.

She likes tools and was all involved in "helping" Kevin take screws out of wood to burn as he was cleaning out the shed.  She is interested in everything.  One of her other favorite things is to look at "Hannah pictures" on our iPhones.  If we have them out she wants to see pictures and videos.  She has her own iPod, my old one, but it isn't compatible with the videos I take on my phone so I can't transfer them.

She is not fond of clothes and especially dresses.  She looks adorable but they go on with a fight and this morning she was trying to pull one off her before church.  She is starting to pick out and put on her own clothes although this usually end up with some interesting outfits worn in some interesting ways.  Right now I really just make her put clothes on when we go out.  She has even been taking her pjs off.  Thankfully she likes to keep her diapers on.  She is becoming interested in the potty and likes to tell you when she farted.

She sleeps like a dream though.  I sometimes take her sleep for granted and I really shouldn't.  Days with her can be rough.  She is whiny as she knows what she wants, when she wants it.  She does not understand that changing shoes every five minutes and getting this and that for her will make it take longer to get out the door which causes more distress as anytime she sees that we are going out she wants her coat on (in her memory she has not know life without a coat) and to go out NOW.

Thankfully she does talk well (and a lot) so that even if you can't give it to her you usually know what she wants.  The is quite the commentator of everything going on especially what is going on with Luke.  She is working on figuring out how to feed him herself, much to my dismay as it creates quite a mess.

But wow is she cute.  And she can be very cuddly and sweet.  She is a typical toddler and we love her.

Me:
So what am I up to, besides kids?
I am still a Thirty-One consultant and I really like having all the great bags around to use.  It makes life with Luke and kids in general easier.

I recently discovered Norwex, a company that sells microfiber cloths that you use to clean.  You can clean with just the cloth and water (I tested it with raw chicken and yes its true) which I think is very "green" and awesome as it is easier.  We are using them a lot and I can't wait till I get the stuff from the party I had.  I like them so much I am thinking about becoming a consultant for Norwex too (if you are interested in it let me know ;) as I love to talk about what I love).

I have been thinking about essential oils for awhile now but have been overwhelmed at all the knowledge and info there is out there but have finally decided to take the plunge.  We have been using a few that my aunt sent me.  Thanks a bunch Aunt Sue!  But I have dove in with Young Living and am getting my first set this week.  I have been reading up on what they can do and their references in the Bible.  Lately I have been using Lavender to help Luke calm down and sleep (I am waiting for my Peace and Calm) and it has cut down his fighting sleep time at least in half and it is helping get him back to sleep in the night as well.  Yeah!!  Another Moebius mom has used them with her trached, and possibly some vent time, son and had great results keeping him healthy this winter.  I can't wait for Theives and what it can do for my peace of mind with germs and Luke.  I have used some Theives products (from my awesome aunt) and loved them and just feel better all around when I smell them but haven't used them in ways yet that my scientific mind can quantify.

Oh and I am also working on keeping our family (other than Luke who eats great, one plus about eating by g-tube, you can eat all the healthy stuff without tasting it and you don't miss the sweets) eating healthier.  And also having meals planned so that there isn't the "what's for dinner" dance and we end up eating something soso.  It is taking a bit of work.  I haven't got a system down yet and I like to plan for a month so that I can get as much as possible on my 10% off day at my local co-op natural and organic foods store (The Grain Train).  I have finally decided to dive full force into Kevin's wiki he made for us to keep all our recipes that we keep a copy on dropbox.  I am using Ziplist for my grocery list as it organizes things by category.  There are others out there and I don't keep my recipes on there because for some reason I don't like my recipes on someone elses' server in their format..  I know I am weird, I have tried it and it is just not for me.  Some of the other apps like Evernote and Springpad and Cozi are just slow and I am not one that likes to wait on an on-line based app.  I have recently heard about another order by mail co-op group that I am going to check out as well.

I can't wait for my farm share, not in season till the middle of June, as I will have fresh veggies all the time that I won't have to go to the store for.  We have found a new closer to home farm, Bluestem Farm, that I love.  They have meat shares and I love their farming practices.  They just started in the area and have a little one too.

We are still trying to sell our house.  I have high hopes that it will sell this spring.  I would love to be moved by the time my parents move July 1st and with God's help it can happen.  I am confident that he has a plan for us I just don't want to wait any longer for it.

Okay so that was a lot and here are the pictures that I am sure you were waiting for...
(there are more but my computer won't upload at this time)

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.

Praises:
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!

FORWARD!

So all the overwhelming things caught up to me today.  And what was the thing that made it all come crashing down in my mind?  Not that I may not have nursing after Feb. 20th.  Not that the blender broke today and I NEED a blender to feed Luke as he is fed through a tube.  It was that I bought ham for the quiche tonight and left it at the store, 20 minutes away, and didn't realize it till it was time for it to go into the quiche when we needed dinner in the oven and to feed the kids and there was no time to go back.  I really was looking forward to a spinach AND ham quiche.  Then I went upstairs to try to call Vitamix again about the smoke coming out of ours and I saw something my dad posted, a link to a blog with the title "A Life Plan When You’re Overwhelmed: Sanity Manifesto Printable".  Wow God is awesome.  How much did I need that right there, right then.   And then it takes me to one of my favorite blogs, Ann Voskamp's blog.  I wish I had time to read her blog more.  Her blog could be a devotional.  She also wrote "One Thousand Gifts" about thanking God and how much better of an outlook on life and your relationship with God will be.  Okay so here's the link: http://www.aholyexperience.com/2013/01/life-plan-day-planner-sanity-manifesto-printable/

At first I only got some of it.  There is an explanation for each of her items down lower.  But the main point is, FORWARD!  That we need to keep moving forward.  I tend to get overwhelmed and freeze.  I don't do anything.  And then I feel awful when I start to come out of it.

I am going to use this to keep moving forward when I just want to stand still.  Maybe not all of these are for you.  As Ann says, "I scrawl out mine, which would be different than yours, and make a place for it on the fridge and it’s not a law, but a scaffolding for the shaky, struggling days."

Since my sanity is in question this evening, I will start with Ann's.  So many of these grabbed me but some at the top are "Word In", get the Word of God in my system every day, "Hard Stops for Prayer", stopping for prayer at certain times every day.  And I would say how she talked about having some things you do at the same time every day or every week.  About having repetion.  I liked this because when everyday feels like chaos there would be things that I would have that always happen. I like that.

Okay so enough from me.  Just take a minute and read it...http://www.aholyexperience.com/2013/01/life-plan-day-planner-sanity-manifesto-printable/

Moebius Syndrome Awareness Day 2013

Today is Moebius Syndrome Awareness Day (MSAD).  My kids and I will be wearing our MSAD shirts that I purchased at a very nice price from The Fresh Project (http://www.thefreshproject.com/collections/moebius).  I will be doing a Moebius presentation in a preschool classroom where Luke spends some time next week.  I didn't have a nurse last night and I desperately need sleep.  The above picture comes from a fellow Moebius mom.  Very cute!  One of the sayings for Moebius Syndrome is "We smile from our hearts".  I would ask that you please wear purple to support Luke and post  a picture of you wearing purple on Facebook and tag me so that I can show Luke the people that are supporting him.  I don't feel as on top of Moebius Syndrome Awareness Day this year.  

It has been quite a stressful past few weeks.  Hopefully I will get around to blogging but basically our nursing days after Luke had a minor surgery (if surgery can be minor) our nursing company called to say there was a problem with our insurance and they would be dropping our case if I didn't figure it out in two weeks.  I spend a week and a half on the phone and finally realized that is the way it is.  During this time I also had 4 nights, 3 right in a row and the 3rd unexpected with no nurse.  Consequently I was exhausted and got a little sick and Kevin had to unexpectedly stay home from work . On an up note we found another nursing company that thinks they can staff us.  And now this is one of two nights that I will not have a nurse in the next five.  Thus, I am not feeling on top of my game at the moment.   

However, you may wonder what exactly is Moebius Syndrome.  Well here it is...

Moebius syndrome is a rare neurological disorder that is present at birth.  It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.  

Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th.  There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present.  Approximately 30% of children with Moebius syndrome are on the autism spectrum.

Symptoms May Include:

Lack of facial expression; inability to smile

Feeding, swallowing and choking problems

Keeping head back to swallow

Eye sensitivity due to inability to squint

Motor delays due to upper body weakness

Absence of lateral eye movement

Absence of blinking

Strabismus (crossed eyes)

Drooling

High palate

Short or deformed tongue

Limited movement of tongue

Submucous cleft palate

Dental problems

Hearing impairment

Articulation / speech disorders

Minor mid-line anomalies

Club feet

Hand/feet deformities

Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up.  Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms. Moebius Syndrome is sometimes but usually infrequently, accompanied by Pierre Robin Syndrome and Poland's Anomaly.

This is taken from http://www.moebiussyndrome.com

One common misconception, mainly due to the lack of facial expression is that people with Moebius have lower cognitive abilities.  However, most people with Moebius have normal intelligence   We think that Luke has above average intelligence but we could be a little bit biased. ;)

Luke does not have facial expression, is not able to eat by mouth, has gross and fine motor delays, no lateral eye movement, drools a lot, high palate, short tongue, and club feet.  Not on this list are his low tone, inability to breathe adequately while sleeping, hypoventilation and central sleep apnea which are treated by him getting a trach at 3 weeks and using a ventilator while sleeping to keep him breathing adequately.

Luke is a great little guy.  He loves people and likes to get everyone in the room's approval when he has built something with blocks or done something he thinks is praiseworthy.  He loves to read and can spend all day going through books and being read too.  He has started going to school this past fall and he really likes it.  He has been growing developmentally since he started which has been great to see.  Luke also really enjoys playing games and puzzles on his iPad.  He communicates with sign language and an app on his iPad.  He even babbles in sign language.  He likes trees and most things in nature.  I am hoping that as Luke's gets older and his breathing improves that we can take more vacations and immerse him in nature.  Luke is not a fan of anything having to do with doctors.  His least favorite things are the things that do not hurt: weight, height, temperature, ect...  Maybe its just the principal of it for him.  He has had enough of people doing things to him.  We try to give him choices whenever we can to counter act all the things we do to him for his health that he doesn't have a choice about.  For all of his health issues he is a great little boy that goes with the flow most of the time and captures the hearts of the people around him.  

To learn more about Moebius Syndrome and read the stories of other Moebius people visit:

http://www.manyfacesofmoebiussyndrome.com/

moebiussyndrome.com

And spread the word.  Talk about Moebius Syndrome and Luke today!