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!

Luke is doing awesome!

So I never seem to find the time to sit down and write but here it goes.

Luke is doing awesome!  He is doing new things and other things better every day.  What has he been doing?

He stood up by himself this week!!!!
He is touching and squeezing play dough with help from a 5 to 1 countdown without protesting.  This is a first for him.
He is using more words with his speaking program on his iPad.
He is walking better in his walker.
He got really really excited to see the Christmas tree light sand other lights around the house.
You can ask him a number with 5 digits like fifty four thousand three hundred and seventy one and he will find the numbers and make the number.  He is highly motivated by numbers.
He is getting more curious.
I am sure there is more but that is what I have now.

We have a nurse to go to school to keep Luke safe and I really like her.  I am feeling like this is the last week I will be at school and then I will leave Luke here without me.  Ahhhhh!  I think I can do it.  Looking forward to the time spend with Hannah helps too.  I miss her little cuteness int he mornings.

We are moving forward with getting a consultation with a new pulmonolgist in an office that is going to start doing phernic nerve pacing which will use electricity to make his diaphragm act like a ventilator.  This means if we do this and it works Luke could get his trach out!!!

Hannah is progressing as well.  She is moved from walking to running and now climbing.  I have found her on the dining room table quite a few times when I come to get her after doing things with Luke.  She is doing great at building with legos, starting to string beads, and building with blocks.  Some of her favorite things are putting hot wheel cars down a track and playing with babies.  She is great at finding a smaller type object and having it with her all day.  She is also starting to put on her clothes by herself.

For the first time in quite a few years we have a real tree for Christmas.  Kevin really pushed for it and I am so glad he did.  It is 10' or so and he cut it from our backyard.  It has just lights on it right now but it makes me happy to just look at it.


Check out this Christmas post from a mom of a teenage girl with a hypoventilation syndrome that has had the never pacer since she was 3.  It is the 12 days of Sickmas and is pretty funny.
http://confessionsofasleepdeprivedmomma.blogspot.com/2012/11/the-12-days-of-sickmas.html

Pictures are coming when the insert photo starts working for me again.

School then sickness

Two weeks ago Luke went to school for three days!!!! He did great.  He walked in his walker, a lot, which was great!  He participated and I think only once got really upset about a song that he didn't want to sing.  It was "Wheels on the Bus".  I can understand this as this song is the song we sing when we are doing something Luke does not like or we know will hurt.  It has a certain cadence to it and there are things we do that are built to fit within the song.  Luke knows the verses, the order of the verses, that whatever it is that we are doing will be done before it is over 90% of the time.  So when it is sung at other times he gets agitated.  Maybe we should have chosen a very unpopular song to sing during unfavorable Luke care but we can't go back now.  I guess it can help him to be more accepting to just sit and deal with things he doesn't like because we all have to face them.

So Luke's day at school starts with walking in his walker from the curb to the classroom.  He is still really enthralled with everything and looking all over so this can take awhile.  Once in the classroom he does fine motor skill exercises (pulling clothes pins off a piece of cardboard, puzzles, using a crayon to draw lines between two points).  He then goes to circle time to sing some songs and check the calendar and weather.  Then off to gym.  The gym is a long ways away and the first day I pushed him in his KidKart.  The next day I let him walk and it was a lot of work for him.  Half way across the gym (we were almost there) I asked if he wanted to rest and he didn't just sit down but laid down on the floor and looked at the lights.  He then got right back up and went over to the kids.  After a break he got back into his walker and checked out the things on the gym walls.  He likes watching the other kids run around and play.  And on Wednesday he got on the rolling scooter things that were in a train the teacher was pulling, in between other kids, and was pulled for about 30 seconds.  This is HUGE for Luke!!!!!!!  I was beaming.  He was so tired when it was time to go that when I went to gather our bags and asked him to walk to his locker he only walked 5 ft and then draped himself over the kids picnic table to rest.  :)  Thursday we left early because he was falling asleep.

So after gym we come back and have free play and that is when some of the therapists work one on one with the kids.  Luke also had some special evaluations for his IEP that is this Friday.  Next the kids go to Centers where they do things like paint, play with playdo, string beads, and color.  Next is snack where Luke has one of his feedings and plays with the food that the other kids are eating.  I like that he gets a chance to be around other kids his age that are eating so that when we get there it won't be quite so foreign to him.   Next is reading time and then some songs to close the morning.

Right now I am going to school with Luke to aid with his medical needs but the school is working on getting a nurse to be with Luke.  I am glad I finally am getting the nurse and not just trained teachers as Luke has a lot going on and he has some life and death issues that don't have time for 911 or someone else to come help.  If his trach comes out he needs help within a minute.  I have not left him for that long with anyone other than my parents so this will be a big step for me when they get the nurse in there and I get them trained and leave.

Now what about Hannah during this time?  She is being watched by a friend V (and through marriage, family member) who has three little boys.  V is great, I feel so good leaving Hannah with her.  Hannah really likes her house too.  No fussing, no crying just ready for fun.  She got to play outside a lot and they have a great yard.  I got there one day to pick her up and she came running to me for a hug but then wanted down to keep playing.  V took some cute pics so I could see what they are up to and is a great mom to her boys and just loves on Hannah while I am away with Luke.  She is such a blessing!!

Well come Sunday Hannah started to get a runny nose and fever.  Then Luke got a fever and his lungs were spewing all sorts of yellow icky crud.  So we did not go to school or V's all of last week.  I got a little sick and so did Kevin.  We put Luke on his "Yellow Zone" meds for his lungs which the pulmonlogist said were the meds they give for upper respiratory sickness anyway. We all finally turned a corner on Thursday and took a great walk on a warm sunny afternoon to take in the fall colors before the weather turned frigid and rainy on Friday.  This is the first really big sickness we had. I knew it would come with more exposure but I didn't know it would come so fast.  This morning Hannah woke up without a crusty nose for the first time in a week!!  However, Luke has a fever again tonight and is not breathing as well.  Also, his right pin site that had finally started looking good took a turn for the worse and has been oozing and looking very icky.  Tomorrow I was planning on school but now I am planning on dropping Hannah off at V's house and heading to the doctor with Luke.  Poor boy I thought we could get away from this without a doctor visit but it doesn't look like it.  He really likes school.  He signs "school" as soon as we get there and even when I stop to drop Hannah off more impatiently like "Let's get going."

Also, this week I started my new adventure as an Independent Consultant for Thirty-One Gifts.  Thankfully it was on Monday before sickness really hit me.  I got to spend a evening with some friends and had a great Thirty-One party.  I am pretty excited about this new venture and the ability it will hopefully bring to keep getting me out of the house, building relationships with friends, and make a little money.  Also, I really love the bags and so I am having fun selling and helping people figure out what would work best for them or the people they are buying gifts for :)

We are still working on selling our house, yes it has been a year.  We have a possibility but it is not a strait forward deal so we have to talk to the bank about it still, and even then it may not work out.  But it is a glimmer of hope.  I am talking with God and wondering if he wants me to be content with my current house, which I like in a lot of ways (heated bathroom floors especially, thanks Kevin for installing those) but there are some things that don't work well with Luke (not being able to get a walker through the yard being one and general layout of the house.  God didn't bring me Kevin until I stopped looking and so I wonder if I need to work on total surrender to God for this house and maybe stop looking.  I don't know but I keep praying and trying to gain more patience.  I know God is going to work it all out it is just my timeline has come and gone and God's timing is taking some work to deal with.

Well off to bed for me.

Praises:
Luke loves school.
Hannah loves going to V's house.
I had a great Thirty-One party.
Kevin's parents were up for a great visit this weekend.
We have a great fall view out our front window with reds, yellows and oranges.
We have a house to live in.
Luke is well cared for, we have good nurses for our night shift.
Great family and friends.

Prayer requests:
Luke to get over this sickness and his pin site to get better.
Our house to sell, and for us to find a new one.
The school to find a great nurse to care for Luke while he is at school.

More pictures when we have time to process photos.

Hananh enjoying food on her birthday.

Luke now enjoys a good game of CandyLand (Thanks Grandma Wright)

Playing together, yes they really do once in awhile.

Quick infection and poo update

So Luke went through some more bad poos when we started the antibiotic for the infection at his pin sites.  I switched his diet back to dairy free and changed it up to what I call the "diarrhea go away" mix.  This mix is working as I have not had a bad poo in over 48 hours.  The c-diff has gone away with antibiotics and his poos have a more normal and not quite so toxic smell.  I am  considering going out in public again with him too.  This is great as when you have a boy with explosive poos going anywhere is not fun and involves lots of extra clothes, blankets to catch things, diapers, wipes, and hand sanitizing wipes to wipe everyone down when we are done.

As for the infections, today they finally looked okay to me and moving towards healing.  Luke is still in some pain just before we give meds and it is sad to see.  When he gets tired it gets worse and sometimes just before bed can be rough.  Today was really rough as he decided to change up his routine at bedtime and wanted Irish music instead of his Signing Time Sleepy music.  There was lots of frustration by all before I thought to ask if he wanted Irish music.  I have to say "Thank You" to the Holy Spirit for putting that one on my lips as I have no idea why I asked that just then.

We are still turning the pins.  His jaw is coming out nicely in the forward direction but is skewed to the right.  So we are turning more on the right than the left.  Saturday we plan to send in pictures to the docs again and hopefully they will give us the okay to stop turning.  Monday we go back down to see them and hopefully get the pins taken out.  I am hoping this trip will go better as it will be without c-diff poo.  When the pins come out Luke can go back to playing on the floor and moving about.  He is getting pretty bored sitting in his chair all day.  It is hard to let him sit and play on the ground because Hannah, who LOVES her big brother, likes to touch and pull and prod Luke.  Also, he still has times where he just lets his head fall or gets off balance and I am afraid that he will hit the pins on the ground and do some serious damage.  So he stays in his chair...till Monday.

Please pray
 for him to be in less pain and less agitated.
For us to be able to keep him occupied in his chair and him to be content with being in his chair.
For the last days of turning the pins to put his jaw in the right place
for the pins to come out on Monday
for a safe and uneventfull trip down to the doctor on Monday

Here are some recent pics.  I will post a series when we are all done turing.

Update on life...

Well things seemed relatively the same for Luke health wise for a long time.  I think more has happened to Luke in the past 10 days that in the past 10 months.  But what a tropper.

So after Luke's surgery he had some bad poos and a leaky trach.  He got a half size larger trach, now he has a 4.5, on Friday and things have been going much better and his leak is minimal and his volumes are great.  I had been noticing his heart rate wasn't going below 100 at night and it is usually 80 and 90s when sleeping.  The trach didn't solve that but realizing and fixing the poo issue did.  I wondered before surgery when he had all the bad poos if he had c-diff (a highly contagious, sometimes serous intestinal issue.  It usually appears after taking antibiotics that have wiped your gut flora and these are the bad ones that recolonize). But none of the nurses said anything and I was sure they would if they though the had it.  After surgery he was on Augmentum, big hitter of antibiotics, and his poos were icky just because of the antibiotic killing the gut flora. His poos got better for 24-48 hours and it was probably because we got off Augmentum and had him on probiotics.  However, he took a turn for the worse this weekend and on Monday morning my nurse said she thought he had c-diff.  She said that the color, consistency and smell had changed to a c-diff poo.  Thankfully we were off to see the surgeon and got a sample and a prescription for an antibiotic to get rid of the c-diff which we started right away.  C-diff hurts as your intestines cramp and sound like a construction site.  We stared Luke on Pedialite as well on Monday evening and after two meals of Pedilite, 2 doses of antibiotics and a few increased doses of ibuprofen Luke was doing better.  His heart rate Monday night got down into the 90s and was back to normal by Wednesday night.  The lower heart rate could be that he was in less pain or maybe he was no longer dehydrated.  Whatever the case we were on the mend.

Well almost...on Monday I had noticed his right pin site was red and ozzing and when at the doctors we got a culture.  The doctor said if they didn't get better to call.  Well by Thursday both sites were ozzing and I called the docs.  I got put through to a resident who didn't know Luke's case and couldn't do anything but talk to other people for me and we weren't communicating well.  It was VERY frustrating.  On call three a resident who did know our case and who I recognized was standing next to the first one and I got more accomplished in 5 minutes with the resident I knew that I had in 30 minutes with the other guy.  During the day I had also e-mailed the doctor and head resident about some other things and that evening I got a call back from the head resident, who we had seen in the office and got the whole story on everything.  Yeah!  So now we are on an antibiotic, not Agmentum (which was what much of the fight was about with the first resident, bad poos and dehydration were not worth the Agmentmum I knew there were other options, the resident did not) to treat the infection at his pin sites.   We saw our pediatrician who took another culture today and so he is up to date and I can deal with him about these infections now which is good.

Oh and the c-diff culture came back negative.  Yes negative.  The head resident who had smelled the c-diff poo said there are sometimes false negatives.  So we are continuing to take Flagel for the c-diff, but not really c-diff, and it is working.  Two of my nurses (the third was not here during the c-diff time) also thought it was c-diff.

Oh and to add to all the frustrating doctors, I have been a little stressed with all of this lately and have a huge sore on my tongue making it painful to talk (it is much better today, thanks nurse Robin for the tip on a remedy).

And then there are the really sad things that have happened.  A little girl with Moebius passed away this week.  She was about Luke's age, we met her mother at the 2010 Moebius Conference, she had a trach and used to have a vent.  I am not sure what happened but she is gone.  It is really sad and my heart breaks for her family.  I also am feeling all the more protective of Luke.

I have read a few other special needs moms blogs and noticed their frank talking about the stress, anxiety, worry and emotional tiredness.  I don't know if I mention it here but it is hard, I am tired ALL the time.  If not physically tired, emotionally tired.  Sometimes I don't always see it until something happens and I just break or melt at some little thing.  It is hard to have a child that has an airway that he pulls out or gets pulled out and know that he has a under a minute when it is half out and maybe a few minutes if his trach is all the way out until he is blue and unresponsive.  Sometimes I want to tell people, no I am not a crazy, overprotective mom (although I may be if you took away Luke's medical issues) who does weird things just because.  Other Moebius babies have died who have trachs and vents.  And not awhile ago and the technology is new but in the past few years, in the past few days.  Things with Luke are not guaranteed (and I know something could happen to any child at any time but the odds of something happening medically to someone like Luke are much higher) and as much put the thoughts aside most of the time, Luke's life is precariously tied to a little plastic tube that comes out more frequently that I would like and it is not a matter of if the trach will come out unexpectedly again but when.  I am having trouble again with him going to school and putting him in someone else's care.  If his trach comes out there is not time to call for me to come, no time wait for 911.  He needs help in under a minute if it comes out.  And above Luke's stress Hannah has been SUPER clingy and whiny needing to be with me, held by me, all the time.  Today she had her moments but overall was better.

Hannah in general is a great player and has some great motor skills.  She is very cute and says a very clear "hi" and "bye" and babbles other things and says "daddy" and "ba ba" when I ask her to say "mama" although I heard her say "ma ma" before.  She loves to carry and pull things around and spends most of her time walking around with something in her hand moving from one area to another being Miss Destruction.

Luke is doing very well being cooped up in his high chair most of the day.  He mainly reads and plays with blocks, which are his normal daily activities even not in the chair.  Since the watching horse jumping on the Olympics he has gotten his fences out and jumped horses over them.  He also enjoyed the diving competition as it reminds him of his favorite book "Where's Walrus" where a walrus escapes the boring zoo and learns that he is a great diver and gets his own diving pool at the zoo.  Luke liked watching the swimming and bicycling too.

Well there is where we are right now.  We do have recent pics and when they migrate to my computer I will post some.

Surgery, what surgery... oh wait yeah I have these posts sticking out of my chin

So to update on Luke's jaw distraction surgery...
(it is another long one)

Saturday afternoon Luke fell asleep asleep, no tossing, no turning, he was out.  We were thrilled.  He slept for around 4 hours and woke up to a couple of  hours of washing his body, stoma sites, post sites and then eating.  He actually went back to sleep!  He slept pretty good for quite a few hours before having some restless sleep.  Sunday morning he woke up his normal self.  It was awesome!  He woke up and pointed to all the things I needed to remove, his elbow immobilizers, his pulse ox, his Ponsetti shoes.  He knows what goes on the in morning and he was making sure I knew, very cute.  I was so excited that I scared my mom when I cried happy tears on the phone.  She thought something bad had happened and I tried quickly to control my tears and let her know all was very well.

Sunday was busy.  I slept in the morning a little bummed to be leaving sitting up fun, playing with his toys and books Luke.  But I did need sleep.  I got back to Luke and found out that all the doctors had come to see him and he was hopefully headed to the stable vent unit that afternoon.  Yeah!  So we packed up and waited for the go ahead.  We moved up 2 floors and thankfully still had our wonderful arboretum view and then some.  When we got settled I went and got a massage from Nancy's (grandma) friend Dawn.  Thank you Dawn!  I am very tight and I should work on this.  Wow have I come a long way from my hockey playing, dance company days in college.  However, my mom found out that Luke loves to exercise so when he has his pins out we will see if he likes "New York City Ballet Workout".  It is low impact and hopefully I can get loosened up.  I am sure my knees would appreciate some more muscle support as well (my knees have been giving me lots of trouble).

Sunday night my parents and Hannah arrived.  I was so happy to see her and she was so confused to see me at the end of a long car ride in a weird place that she didn't even smile at me.  She had also just woken up from a nap.  However, she was very vocal about leaving me and it was good to cuddle her.  She did give Kevin (and maybe Luke sitting next to him) a big smile when we walked into Luke's room.  It was really hard to have her in the room as she wanted to get down and go all over but then still be in my arms as she missed me.  She was also getting over tired and so my parents took her to my Uncle's to spend the night with them.  It was very hard to leave her again but I knew it was best as there was no way Kevin and I could take care of Luke and have Hannah with us in the hospital/hotel room.  On Monday when I saw here she gave me a huge smile and came right to me.  She was dressed in a cute strawberry outfit and oh so cute!

Luke was feeling good all day on Sunday, sitting up most of the day, reading and playing with toys.  Very nice to see.  Sunday night/Monday morning was also full of poo!  Two blowouts that night.  The poo has been bad.  Antibiotics are not nice to digestive systems.  Luke is taking the antibiotics to prevent infection at the pin sites and due to the internal device.  We are done in two days but the poo is awful.  However, he slept some that night and woke up a happy little guy, once his poo was removed and he had a fresh bed, on Monday.

The residents from oral surgery came down on Monday morning and turned the posts and thus started the actual jaw distraction and movement.  It seemed too easy.  We have a quite large, purple (my favorite color) screwdriver looking thing that fits over his posts and there are instructions on which way to turn and that 1 turn = 0.5 mm.  We were instructed to turn 2x per day and they estimate around 20 days.  We will follow up next Monday to check the progress.  They also said that he could go home.  What? Really?  We can go home!  We were ecstatic!  We had planned to send Hannah home with Nancy to watch her at my parents house until we came home but now we could all be home.  It was too good to be true but it was real!  We got our discharge papers and prescription and after lots of packing and a few trips to the car were ready to go.

Luke got really excited to be out and was a good car rider, even sleeping some.  However, he became really junky, needing lots of trach suctioning, as soon as we left the hospital.  This is a lot of work and we are still working on figuring it out but are hoping he is just adjusting back to the non-hospital humid air.  We had one poop blow out on the way home but fortunately the car seat was saved by the extra chuks (pads to absorb liquids that have plastic on the underside so they don't leak on things) from the hospital that we put down.

We got home and Luke all situated.  My parents brought Hannah back all ready for bed and we got to rock and nurse.  We don't have night nursing for Luke until Thursday night so Kevin and I are still switching back and forth.  Nancy came back up with us and is helping wrangle Luke and Hannah and keeping Luke from falling on or banging his posts and keeping the posts away from Hannah's exploring hands.

We are still running on little sleep at awkward times and will be very happy to see nurse Keri on Thursday.  We are still trying to figure out how to keep Luke's posts safe, give everyone enough sleep, keep Hannah happy, keep the house running and figure out how much of Nancy's help I will need.

Luke seems like his normal self, he is even letting me wash his pin sites and turn his pins sometimes without someone holding his hands to prevent him from pulling out his trach.  He has learned to sign "mama" and other sights at his chin up around his nose to avoid the pins.  I was a little concerned he would bother the pins with his very exuberant signing but that smart little guy figured it out.  I am going to keep him contained in his high chair or with someone right next to him till the pins come out because I am so worried he will fall on them hard and do some real damage.  The risk of damage is much higher than the displeasure I have at confining him.  He didn't seem to mind today but it was only day1.  Luke had really low muscle tone and will often fall over, lean on things and rub his face on things and I do not want him to do that with the pins sticking out.  If he wasn't such low tone maybe it wouldn't be an issue but then there is Hannah.  She loves to pull his hair, his trach, anything he has out of his hands and I fear that she would think the pins are cool and pull them as well.  We were told pulling does not harm them (lots of force pushing would) but I don't want to test it out on Luke.

Also, Luke has been leaking around his trach at night (some of the air his vent is pushing into his lungs is moving around his trach and up through his mouth and nose instead of into his lung) and he has been breathing faster and shallower breaths.  I don't like this as shallow night time breathing with low volumes recorded by the vent leads over time to Luke building up CO2 and not doing as well.  The ENT is ordering a larger trach (which nurse Mike has been thinking Luke may need for awhile).  I am a little bummed because Luke has been making noises over his vent again (for the first time since maybe a year old) and I was thinking that he may vocalize with his passy muir, or similar, valve now that he has more room around his trach and realized that he can do it.  The ENT said the bigger trach may still allow him the room to do it but it may not as well.

Oh and I had this waking nightmare thought that I may have turned Luke's distraction pins the wrong way this evening but his awesome doctors (which allow me to e-mail them, thus a lot of their awesomeness) got back to me right away and said nothing bad will happen if I accidentally did move them backwards.  Yeah for not worrying but I will be really sure I am turning with the arrow from now on.

Thanks for...
Luke's surgery going really well
Luke bouncing back from surgery
getting to leave the hospital days earlier than we expected
having Nancy able to come stay with us
my parents watching Hannah and Hannah have a really good time
good doctors


So prayers for...
a good full recovery for Luke
that the distraction goes well and works
for Hannah to readjust and get through her fear of us leaving her
for us to get sleep
for our nurses not to get sick and be able to show up for their days starting Thursday
resolving the vent leaking issue
that we keep Luke's pins safe from bumping and harm and Luke happy in the process

Thanks for all your continued prayers and support!

Luke in PICU right after surgery, before his cheeks started swelling like a chipmunk.

Luke sleeping on the car ride home with his swollen cheeks.

Kevin said that Luke looked like a Saber-toothed Chipmunk :)  I love his sense of humor.