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.

I want to go...

Is what Luke has been signing since he woke up in post op.

Luke woke up and did really well during and right after surgery. However, after the anesthesia wore off he didn't have enough pain meds in his system and he was hurting bad for a bit. He is so hard to read about pain. First because he has no facial expression. Second because we don't have experience with pain. He is usually so crazy and flailing when you do blood pressures, weigh him, and do simple things that it would mask any pain. However with this surgery I can see him zone out and become unresponsive to me talking to him and getting super ornery as well as increased heart rate when he is in a lot of pain. I can tell that he is uncomfortable as well more now too.

He is doing a good job signing with elbow emobilizers on and using the iPad to tell us things. He can't tell us about his pain l level on the iPad thoug and I wish he could. He just pushes the button that I said last.

He did really well
Until last evening and didn't sleep even though tired until after 2 am. He has been resting today and sitting up to get a real shirt on took a lot out of him. Right now he is trying to sleep but tossing a lot. He has a number of does of pain meds now so I don't think he is in pain but I can only imagine he has to be uncomfortable.

We have a lap desk all washed and so when he is up to it he can play with his toys.

Back to the surgery itself. The doctor said that Luke has healthy bones which is good. The difference between his upper and lower jaws increased since he saw him last year. They plan to move his jaw out 20 mm and that will give him a little bit of an underbite and room for his upper jaw as it grows faster than the lower jaw. We will start turning on Monday and turn .5 to 1 mm a day. After the turning is done the posts sticking out of his chin that we used to turn the internal device will be removed. Then the internal device will be removed when the jaw bone heals in 3 or more months. They said if things are going well developmentally we can leave the device in for up to a year.

Since I started writing Luke is now sitting up and reading books. We have had baby signing time music on almost continuously since we got to the PICU so maybe I can convince him to listen to something else for awhile.

I am writing this over the whole morning and Luke tired out fast and is back to resting laying down on the vent. Grandma is by his side giving him some food. Which thankfully hasn't been a problem since surgery.

So we continue recovery and may be moved to the stable vent unit later today. Which means he can go for stroller rides:)

Thanks for all the prayers and support.

Approaching Surgery...don't freak out

So Luke will be having jaw distraction surgery on Friday morning at 10:30 a.m.  This past week I have gotten a little nervous, gotten really worried about him not making it through (and Kevin gone on errands then they tell me, nightmare!) and now I am feeling okay.  Still a little anxious but at maybe a 1 on a scale of 1 to 10 with 10 being I can't function I am so anxious.  This is really good for me as I tend to worry and I like to plan things and the plan is that we don't have a plan.  Yes, I Emily, am doing okay without a plan.  See we have never been in the hospital with Luke, since the NICU, but for one short visit for tracheits and it wasn't that bad of an illness it was just his first time so we didn't know how to deal with it.  I don't know what to expect from a major surgery on my sweet little one, a week stay, and what I am really going to do with a very mobile 1 year old in a germfilled hospital environment.  I have ideas and some options but nothing solid.  We are just going to see how it goes.

What is jaw distraction surgery you may ask.  Luke will have his jaw broken and then a device installed with little pins sticking out.  No big outside bars and wires (at least if everything goes well).  We will turn the pins a little bit (like millimeters) each day to move his lower jaw out so he will have a normal bite and be able to eat and speak and maybe even help his breathing (its a long shot but the doctors said it happens sometimes when the jaw seems to not be any part of the breathing problems and I believe God can work miracles).  Not that he will eat and speak immediately but we are working slowly on it and you can only go so far when your lips don't close and your teeth do not meet right at all.  Very painful for him and the risks are infection and nerve damage.

We are going to be driving the 4 hours down to the hospital starting around 4am on Friday morning because it is just too hard to have Luke in a hotel room overnight.  We will be checking in for preop around 8:30 a.m. and hopefully be in surgery by 10:30 a.m. and out around noon.

I am hoping they will again allow Kevin to be with him till he is asleep and us to be there before he awakes.  Even if he wasn't a decanulation risk I don't want my poor sweet Luke to wake up with no mommy or daddy  and in a new place in pain.  They were good about it for the CT scan but if surgery is different "mamma bear" is coming out in full force.  I get pretty stressed and uptight when Luke is involved and thankfully Kevin's anxiety level is permanently on 0.  ;)

I am also getting sad about being away from Hannah baby for 3 days.  My parents will have her Thursday night through Sunday afternoon when they bring her down to us.  I am glad she isn't going to be there then as I will not be able to give her my attention and she will be left to the side.  This way she has days of being spoiled and being the center of attention.  Kevin's mom will be there with us as long as we need her (Thank you Nancy!) and will be on Hannah duty during the week most likely.  I have some possible things planned for her but hopefully she will do well.

I got a little sick this week from lack of sleep but am feeling better.  However, I have lots of laundry and packing to do, plus leaving the house ready for a showing as we are still trying to sell it.  It would be awesome if it sold while we were away.  We have already been making Luke food and freezing it so we have enough for the week.  I checked with the hospital and they are okay with us bringing his food as long as we sign something to say we won't hold them responsible if he gets food poisoning or what not.  I overheated the blender last night because I put too much food in at once.  Oops!  For all you blenderized diet mamas out there, Fresh Baby So Easy Portion Storage Bags are great to store and freeze liquids in, they would work for breatmilk too.


Oh you may wonder how Luke and Hannah are doing...
Luke is doing great and doing some imaganitive play and doing more playing and less obsession about book reading!  He is also a lot cuddlier but I think it is mainly jealousy of Hannah.  Luke is just doing good and improving with his play and communication skills all the time.  He also knows maybe 40 words by sight.  This kid is smart.  I feel bad that his communication is so limited.  I still haven't gotten to revamping his iPad communication program but maybe that will be a good task for when he is in surgery.

Hannah is everywhere!!!!! and into everything and just crazy Hannah.  She is eating table foods now but I am having a hard time as she won't eat everything I put in front of her.  She wants to feed herself but hasn't mastered eating with a spoon and will only let me feed her sometimes.  But she doens't have enought teeth to eat that much stuff and so veggies are hard to get into her.  And she cries, no whines, if you don't share your food with her.  Luke is so easy, he eats what you give him and it doesn't create a mess.  I am having trouble with trying to giver her the good complete diet that Luke has but I know in my mind she will not eat that well.  And the mess, oh my the mess.  She eats naked most of the time, I am not sure what I am going to do come winter.  She will only wear a bib once in a while so my options are limited if I want to keep the same outfit on her most of the day.  She loves to play instruments and her and Luke will play the xylophone and drum together, very cute.



So please pray for us as you feel led but here are some specifics if you would like:

1.  Luke would go through surgery well.
2.  Luke would not have any nerve damage and not get an infection or
other complications.
3.  That we could deal with having to be with Luke 24/7.  At home we
have night nurses I trust but in the hospital I stay with him as I
don't know the nurses and they are in charge of more than just Luke.
4.  That Hannah and I would do okay without each other for many days
and not seeing each other much when she is with us.
5.  That I would continue to do well with the unknown that this all
is.  Luke has never been in the hospital for more than a minor
sickness and it was once for a few days.
6.  That Kevin, Hannah and I would stay healthy.

Here we go...into the surgery unknown...

Life after the Moebius Syndrome Conference 2012

Life is overwhelmingly busy, I probably should be doing other things and not writing this but oh well this is more fun...

I still have decompressed and taken in all the info from the conference.  I still have paperwork to fill out and doctors to get together and blood work to get arranged after the 3 consults that we attended for Luke.

As much as I kept saying we were going on vacation, it was not a vacation of time or energy, it was just a vacation from our house and our normal routine.  It was fun but exhausting as I was not able to sleep while up with Luke.  He did not sleep well and I was constantly worried about him catching his tubes and pulling his trach out.  But we saw people, talked to people, and got out to see more of the world.

Sara Rosenfield-Johnson of Talk Tools did her end of study evaluation on Luke and was very impressed.  Go Luke!  Luke even tried with minimal protest 3, yes 3, new tools!

Oh, and did I mention that I never realized how well known Luke is.  Many people recognized him and knew exactly who he was.  He was a star.

Luke did awesome and just went with the flow.  Hannah got pretty fussy by the end of the time.  We went to see the aquarium.  Luke loved it!  He signed "shark" and "hippo" which I haven't seen him sign before.  And he did a lot of signing about "fish" and some about "turtles".  It was great.  The hippos were my favorite and at the end of the day we had a little more time and I asked Luke if he wanted to go see the hippos, sharks (in a tunnel where they would swim over you) or the fish (very big window lots of other animals too) and he right away signed hippos! I was glad and we got to see them above water and more active the 2nd time around.  Plus we went through the shark tunnel again to get out.

The grandparents were key in our trip and we couldn't have done it without them.  They spent countless hours with Hannah, and Luke during the trip while I was off learning and working on other things.

Learned more about sleep disorders, autism and Moebius, ideas to increase social and imaginative play, sensory issues (through my mom), and much more.  I also met a mom who's baby miraculously stopped having hypoventilation. Wow, great story and will have to follow up more with her when I get the time.

So what has been going on since being home...
Hannah is a walker!!! and starting to be a climber, yikes!
Luke is doing much better at play thanks to the great ideas at the conference that mostly solidified (and thus kicked me into more action) what my Early On therapists were telling me.  Plus really getting out probably did wonders for him.
Unpacking, washing, trying to catch up with the day to day workings of a household.

And we are still trying to sell our house.  We found one that we LOVE but we need to sell ours.  Prayers in this area are very much appreciated.  We are looking to move to just have some more space and better space for Luke, the nurses, and Kevin and I to all coexist (and Hannah too, I am sure she would like a room that isn't storage as well).

Big surgery coming up on August 17th!!!  Luke is getting his lower jaw brought out to help create a correct bite and thus help with eating and talking.  Things he doesn't do now but will be hard to do without the surgery.  I am nervous and a lot excited about this surgery and it will change the look of his face and the possibilities for eating and talking.  This will be a rough period on Luke as well as Hannah, and us as we will be on 24 hour Luke duty while he is in the hospital.

Okay, I need to get working on cleaning the living/play room and getting my head on strait for tomorrow's activities.

Luke and his grandparents at a meal.

Luke and our good friend Leslie.

Luke with Kay (Moebius Syndrome groups in South Africa) and Tim Smith (Many Faces of Moebius Syndrome founder)

Hannah and I chatting.

Luke and I with Renee from Talk Tools, we have been Skyping with her once a month for a year so it was nice to see her in person.

All the Moebius kids.

Hannah having table food with Grandma.

CT scan under anesthesia and the dentist!

So I have been meaning to write quite a number of posts but I have been BUSY! A mobile 10 month old and a non-walking, trach pulling, 3 year old can do that to you. So I wills start with our latest visits and developments with Luke and then post some about June visits and things later.

Yesterday Kevin, Luke and I headed to Mott Children's Hospital in Ann Arbor. Hannah thankfully stayed with my parents and had a great time. I am so glad my mom thought of just taking her and that she is old enough for this as 8 hours in a car and a stressed out mommy due to Luke's procedure would have made for a very bad day for her. She had a great time with my parents, and they had a great time with her. She even stayed over night and only kept them up for one 2 hour block. Not a bad night for Hannah.

So why did we go? Luke needed a CT scan of his jaw before his jaw distraction surgery in August so the doctors can get the lay of the land and make sure they have all the appropriated sized tools and equipment. To do this Luke needs to be put under general anesthesia as he has to hold still for 10 minutes or so of the scan and what 3 year old, let alone my terrified of anything or anyone medical little boy. And also nervous that as he woke up he would pull out his trach and cause an incident.

He was put under once before for ear tubes and it didn't go so well so I was nervous this time. But now that I think back, he did fine, it was just how it was handled and how I reacted that did not go so well. It was going to take 10 minutes and the ENT said that things would be easier and he would not have to be admitted if we kept him off the vent for surgery. I said okay we can try it as at this time I think he was getting one nap a day off the vent. We hadn't yet realized he had alveolar hypoventilation and central sleep apnea. However, they put him on 100% oxygen and said he did fine. We were called back before he woke up to the recovery room because they didn't have the power cord to the vent and it wasn't worked they said so they wanted us to come back. Well I didn't give them the power cord because I didn't want it all over hospital floors and the vent has 45 minutes or so of batter power built in, more than enough time for the surgery and us to get to recovery. I was not able to talk to the anesthesiologist about the vent because she went back to surgery and then they said they wanted it so we went back and got it and sent it with a nurse. There was some miscommunication as to whether to leave our stuff or not and we should have brought it to pre-op holding and then I could talked to the anesthesiologist about the vent. Oh well, lesson learned. When he woke up they had him on 5-6L of oxygen!!!! and put him on the vent at like 60 or 70 breaths per minute. I was really not wanting him on that much oxygen but they would only turn it down in small increments every 15 minutes. Ahhhh, we were going to be there all day, and, as we would find out, you are only supposed to be in recovery for 2 hours at most and if you need longer you need to be admitted. As they turned his breath rate down below his waking rate he still wasn't breathing like his normal fast self and they were waiting for it. I was thinking but Keivn put it into words that he wasn't going to breath over the breath rate if he didn't have to. He was being pumped with oxygen and the machine was giving him good support so there was no reason for him too. Kevin and I worked to get the nurse to turn the settings down faster as Luke was sitting up reading books and being his normal self right away. We even would try to turn down the oxygen when they walked away. Finally, they nurse said she was going to call the anesthesiologist because we thought he was fine and we wanted to go but she was all nervous. Well when she left we started turning things down and then Luke started breathing like normal once his oxygen levels and breathe rate were down to reasonable. This happened just before the nurse came back with a different anesthesiologist than did the surgery and he listened to the nurse then to me and said “Do what the mom says, she knows best.” Thank you Mr. Anesthesiologist.

Every experience is a learning experience and now I know that he needs the vent when under and to really be firm about he settings and I am not afarid to be a lot more adamant about Luke and his breathing.

So back to the procedure from yesterday. I was prepared with the vent and with 6 trachs I think. I was prepared to fight to get Kevin in the room or at least one of us there till he was out and have us back before he woke up. As much as I love DeVoss the ear tube surgery incident just did not go well and maybe it was just a freak thing but Motts handled it awesome! No issues. I didn't even have to push for anything.

The anesthesiologist came in and asked what questions we had. I was telling all nurses and told him that Luke is a huge trach puller. They don't like to hear this and are very accommodating to not have a trach out emergency on their watch. So Luke rode on Kevin's lap on the gurney to the procedure. Kevin stayed with him till he was out. They called us back before he woke up and basket case me was like pushing nurses out of the way to get to his side and see his face when we got to his bed. He was just fine. They were going to change his trach out for a non metal Shiley (he has a Flextend Bivona Plus, the plus for extra long so it is harder to pull out) but the scanners got a good scan and no trach changes were necessary. He didn't pull his trach out once, although there was a lot of grabbing and arm holding. They had no problem calling us back early and Luke woke right up and was just slightly groggy Luke. Kevin played him “Baby Signing Time” on his iPad while we waited and I fed him and did all the post recovery things. They told us they put him on 100% oxygen while he is out just in case bad things happen as it will give him 3-5 (maybe 2-3) minutes of oxygenated so plenty of time to get a trach or airway back in. He wasn't thrilled with the IV on his wrist and the big plastic thing on his thumb to protect it. This was the thumb he like to suck but he ended up sucking his pointer finger when he couldn't get the thumb in his mouth.

My mom made him g-tube pads in the shape of starts with star fabric on them for the 4^th of July and he was wearing one. It got lots of great comments from the nurses and our nurse called others over to see how cool it was. Go mom/grandma!

So after a successful CT scan we were off to consult with the dentist about getting Luke's teeth cleaned during his jaw surgery while he was knocked out and my stress level went down to base levels. Then the dentist came in...

Dr. Laura thought that they would try to clean his teeth but would start with counting them and brushing them. I thought she was nuts. My stress level skyrocketed and Kevin took the go bag with the extra trach off the cart and to a more easily accesible place. They brought out this bean bag thing to put in the chair and Luke got to lay in that. Kevin held his arms. I held his head and a little bit of his arms and the dentist and her assistant went to work.

And what do you know, they counted his teeth, brushed them, and cleaned the one that needed to be cleaned. I was shocked and amazed. I think I asked her twice to make sure that she did everything she needed. He has all the teeth he should and no cavities! Moebius people are not known for good teeth so this was a huge blessing. She did say that she wasn't saying his permanent teeth would not have issues but we could check them out in the x-rays that will be taken during the jaw surgery. We had noticed some amber spots on the tops of his back teeth and she said this is plaque that calcifies. This is good when it is on the top of the teeth as it acts as a sealant. However, if she finds this on the sides of his teeth it is not so good because it can cause cavities. They found it on the side of only one tooth and she cleaned it off. There was more of this on the right side and she was thinking he probably sleeps more on his right side and so pooling at night would cause buildup of plaque. I told her he drools more on the left and she said that would line up with what she is seeing because the drool washes things through and so the more drool on the left side keeps the plaque from building there. He doesn’t eat anything by mouth so we skipped the fluoride treatment and were on our way home.

We stopped to pick up something at a little shop downtown and decided to walk to get something to eat. Not such a great idea in the high 90s heat. We walked maybe 4 blocks total but Luke's little cheeks were all red, which is how I know he is really hot this summer. We did pick up something to eat in an air conditioned restaurant in the middle of our walk. He was loving the walk though, he was sitting right up in his chair looking at everything and was antsy when we stopped to get our food. For most of the day we were in air conditioning so he didn't do too bad.

As Luke has gotten older he doesn't like to sleep in the car. He will tell us over and over that he wants to go to sleep and we tell him to just go to sleep its okay. But I think he wants his bed. He slept one 45 minute nap in addition to being knocked out which really doesn't count from 6:45 a.m. to after 10 p.m. when he went to bed. Poor boy. He slept well though and took a decent nap today.

We are trying to sell our house and move into a more Luke and our family friendly house. We haven't had a showing in forever and our relator called yesterday afternoon to ask if we could show it this morning and of course I said yes. So I worked hard and got the house all around last night and this morning. A HUGE thank you to nurse Keri and my dad for helping this morning clean and watch kids. Now we just wait and see.

It has been a busy and non “normal” week for the kids and Hannah was pretty out of sorts today. We are leaving for the Moebius Conference on Wednesday so things aren't going to be normal for awhile but hopefully she will adapt quickly. I am excited about the upcoming conference and can't wait to meet the Moebius moms I talk to on-line and have Luke meet other Moebius people and kids. This will be our first trip with Luke overnight that he is not in the hospital so hopefully things go well. Luke needs someone watching him 24/7 and I am going to take this on. Other trach/vent moms sleep when their children do and have them in the same room or in earshot of alarms. I am going to attempt some sleep at night but I am not sure how it will go.

Please pray for our trip that nights would go better than expected and for safe travels. My parents and Kevin's parents are going as well so we will have 6 adults to 2 kids. Wee will also be seeing Kevin's brother and his fiance on Monday for some sightseeing and fun.   

Feeling solid

So I have thoughts of posting more but then it just doesn't happen.

I have been feeling SUPER overwhelmed with no end in sight lately.  And most of the time when I get overwhelmed I shut down and get next to nothing done.  However, recently I did start and successfully do my second monthly meal plan and a big shopping trip to go with it.  I am working with a couple of new apps so hopefully every month will get easier as I will have most of my data for the month entered.

Well now to what I originally sat down to write about.  My Lukie.  I feel like I am in a content spot with what is going on with him and I almost didn't realize how not content I was until I was content.  And really nothing has changed with his health or his treatment or even really what we can expect.  It is that I feel I have a name of something that fits my Luke's breathing issues.  My current contentment may be fleeting but I am holding on while I am here.

Yes, Luke has Moebius Syndrome.  Moebius Syndrome at a base level is just the 6th and 7th cranial nevers not doing their job of moving the eyes outward and allowing facial expression.  However, Moebius Syndrome can come with a wide rang of other issues and not one seems to be the same.  Moebius is rare and Moebius Syndrome with breathing issues needing trachs and vents is rare within Moebius.  In the states I think I can count two hands the number of Moebius people with or had trachs and vents.  And within those none seem to progress the same way.  So we have really never known what to expect with Luke and his breathing issues.

I must say until maybe late summer or fall last year I was the eternal optimist and was always thinking Luke getting his trach out was just around the corner.    I think I was always thinking that Luke was doing great and should be fine just weaning off the vent then trach.  I was looking for the doctors to give me a real reason that he needed it.  Some diagnosis or concrete thing other than he just isn't handling things well or we need to just go really slow or he is building up CO2.  I felt that we were treating symptoms and had no idea what was causing them and in my mind I wanted to know so we could work on his breathing issues for the correct angle.  I like to have my ducks in a row, in their boxes, that are in sorted by size and color of duck.  :)

We had 4 sleep studies last ear and we were told that Luke has central sleep apnea and alveolar hypoventilation.  We knew about the centeral sleep apnea first and basically it is a brain thing and a lot is unknown about it and it just is, not much just do x,y and z and it will be fixed.  We were told at one of our pulmonology visits that Luke's brain could start taking correctly with his lungs in a year, in 5 years, in 10 year or never, they just didn't know.  Their feelings were that he would outgrow this and it would not be forever but that it could be a long time.  But really we were in this for the long haul.  My brain was still on the 2-3 years and then the trach is out plan.  This is the first time that I really probably dealt with the reality of Luke and his trach and vent.  But still central sleep apnea is vague and unknown so didn't really get me sitting comfortable is how we were going about things.

After the last sleep study results came back they also said he has alveolar hypoventilation.  Alveolar hypoventilation, we were told is when his brain isn't communicating to pump his lungs adequately and there can be buildup of CO2.  Luke's central sleep apnea falls under his alveolar hypoventilation issue so it was all one thing.  There was no change is treatment or vent settings and so life just went on with these notes on a sheet of paper (which I have since lost and I know scan my scribbled notes from my phone calls with doctors).   We didn't have another pulmonology appointment for some months and I had forgot about it and to ask more questions at the next visit.  Of course when we were at the visit, as always, they think he is doing great and just to keep up what we are doing which is very nice for a mama to hear.

The maybe a month ago now, my mom came across some info on the web that lead her to alveolar hypoventilation and she called me up and was like "Oh my gosh Emily, this is Luke".  She had forgotten that I had mentioned it many months ago, but then it hadn't been on my mind either.  As I read the links she was sending (I am a researcher by trade but as a busy and overwhelmed mom of two young kids, well just even Luke, I have passed the researching on to my mom who loves to research things) I felt myself grabbing on to something concrete and solid when thinking of Luke's breathing issues.  My favorite link, thus far, http://emedicine.medscape.com/article/304381-overview.

So I was finally feeling Luke I was standing on sold ground.  Now I had heard this diagnosis before but it just didn't stick the first time.  And alveolar hypoventilation still leaves lots of unknowns in when and/or if Luke's trach will come out.  But here is something that is describing what my son's breathing issues are like in black and white type.

I am feeling okay with Luke's trach being long term.  Oh I would give just about anything to have him not need it but he does.  I think the solidness of it is that I see why he needs it and that his brain is the issues.  I feel better that his lungs are not a mess but it just seems to be his brain to lung communication.

So what do I do now... I pray that his brain with start working with his lungs correctly and allow him to breathe without the vent or trach all the time.  And I enjoy my little boy and his little boy cuteness.

Some cute kids pics

Luke put these in order all by himself.

Eating time.

Easter pic

She is so cute and loves laundry baskets.

Head to head.

"Let's figure this out together."

Overwhelmed

So this is a venting post.  I think I generally display a positive all is good persona but I just don't usually talk about the bad days.  Like today, and yesterday, oh and that week I was sick, and...  I get really overwhelmed. And usually shut down.  So I am venting via blog today.  And I do love my kids and my husband but it just sometimes just gets overwhelming because I want more time to enjoy them.  I don't write this for pity either.  This is just part of my story and I want others out there to know that I don't have it all together.  My good days far outweigh the bad, at least I think so.  And my kids are so cute and fun.

Luke by himself takes a lot of care, from feeding, food preparation, suctioning, diapering (he pees and poos a lot), figuring out what he needs/wants when he can't just strait up tell you and he doesn't have facial expression.  This is all while trying to get my 9 month old to not eat the foam off Luke's walker, keep her from all that she is not supposed to get into and picking her up from her numerous falls as she is standing and climbing all over everything.  She also needs to be fed and have food prepared and lately she is taking longer and longer to eat.  She needs to be diapered and after going from a poop a day to 3-4 a day now that her system is working with real food it happens often and she does not like to be changed and cries and is flipping over for most of the time and so has become my least favorite activity.  I would rather change a mongo stinky Luke poo that is everywhere than her.  She is that difficult to change.  I sing, I give her toys, sometimes it works, sometimes it doesn't, and she give no indication which way she is going to go.  She has been super fussy lately because she is teething and wants me all the time.  But she can't have me all the time.  Luke doesn't like to hear her cry but I just can't help it sometimes.  Oh boy is it a circus.

And then there are house hold chores, which only got done last week because I had two nights without nurses and so did some then as well as catch up on all the mundane things like finances and programming Luke's iPad so he can communicate with us better and stuff like that.  And yes I could stand to lose quite a bit of weight but how do I find the time to exercise when I am so tired and can't find the time to do things like clean my house, play with the kids, grocery shop and stuff like that.  And I hurt my knees so I am going off to PT again, which is good because it is like mandatory exercise and makes me have time.  And you ask can't my husband help.  Oh he does, he washes dishes, he makes dinner, he watches the kids when I need to go grocery shopping, when I do clean, when I try to get any of that other stuff done.  He gives them baths, he does most of Luke's trach and stoma care and bedtime routine by himself as I am dealing with Hannah.  He is great and the problem is he doesn't have any free time either, so the more I ask for the tighter he is squeezed.  And because Luke has a trach, there are only three people besides myself that I can leave him with.  I can't just put him in day care a couple of times a week, even if we did have the money.

And I want to do more cool play stuff with them, to get Luke doing more things and make sure I don't leave Hannah behind because we are so concentrated on Luke.  And I like taking care of my own kids.  I like spending time with them and knowing that I am one of their favorite people (dad is the other).  Everybody is happy when dad gets home from work.  And we have realized that him working from 6am-2:30p.m. is a good thing as he is home earlier.  Oh and then dealing with having people in your house every night and basically having someone come to work at your house, which is good because I need to sleep and Luke needs care throughout the night, not continuously but even if I were to sleep in his room and just wake up when he needed suctioning or diapers I would not be sleeping much.

And on top of all this there is the threat of Luke pulling his trach out.  And when he pulls it out he goes down fast.  It's emergency when it happens, and it does happen.

With all of this sometimes the overwhelming part is I have years left before this level of care of the kids decreases.

Some days I find myself with free time and not really sure what to do with it and how to best use it.  But there are a lot of good times in this craziness.  Smiles from Hannah.  Hugs from Luke and just the cute things he does.  Reading to Luke and seeing him get really involved, watching him play with blocks.  He is a great kid and Hannah surprises me almost every day with something new or super cute.  My husband is awesome.  He jumps right in and takes care of us as well as working his super busy job.    I have parents who live close by that help me out and my brother too.  I have a mother-in-law that will come and stay almost once a month for days and helps out doing whatever.

I also am stepping back from my germaphobia.  Yeah!! It is freeing and I am getting there, getting back to a normal level of germ avoidance.  This also creates less work and stress.

I know I am not alone as a mom who is overwhelmed.  So there is my crazy life, and maybe someday I will get back to my hobbies, or at least have things that need to get done more in order.

Go, Luke, Go...and Hannah too!

This kids are on the move!

Luke is walking with his walker with very little or no help!!!  And he loves to walk in his walker and will walk in it at almost every opportunity.  At home he is usually limited because I can't help him all the time as I am busy with Hannah at times and my back can only take so much bending.  We visited school this week and since there were some sick kids in the classroom we had our PT time in the hallway.  We met a new PT that Luke seemed to take to right away.  We started by showing her Luke's awesome skills with his walker.  If you hold the walker he can get up into it and turn around all by himself.  Luke then walked for 45 minutes!!!  He walked up and down the halls, he walked down inclines and up inclines, he walked to look at the school doors and talk to another little boy through the glass (good socializing) and when asked if he wanted to play with a large ball or keep walking...he wanted to keep walking!.  It was awesome.  Yes there are lots of exclamation points in this post but I am so proud and happy for my little guy.  It has taken us a long time to get this far.

I have also been wanting to get him to use a ridding toy to get around because it gets him off the floor, he will be able to travel better with others, he can rest on it, he can stop to talk (he signs), he doesn't need as much supervision, and just seems like a good alternate mode of transportation.  We know another boy who has Moebius Syndrome that uses a ridding toy and loves it so we thought this could be a good avenue for Luke.   We have been showing Luke ridding toys and trying to get him on one for over a year.  He doesn't like new things very well and this not so new thing still wasn't his thing.  And after awhile of fighting with him about it I just stopped.  Well we started up after he started using his walker more and still had a lot of protest from him when he was on it.  A week or so ago I got him to hold the handles while I moved his feet, and he protested the whole time.  After seeing him do so well with the walker at school I thought that I would really like to try, with more effort on my part, to get him to use the ridding toy.  Today the first time on it he protested but was willing to work with me if I would read him a book at the end.  (Our Moebius Friend G's mom said she will work for music, well Luke works for books.)  During our trip to the bookcase and then over to the couch and back to the bookcase (with book reading at each location) he used his legs by himself a couple of times.  When Kevin came home we put him back on it and he rolled to me all by himself and then back to Kevin!!  I was amazed!  Very cool and hopefully he will continue this upward climb and meet a lot of his gross motor skills goals.

In other areas Luke is doing well too.  I was reading about teaching preschoolers to read on some blogs and someone suggested starting with the sounds as that is what they need to sound out works and not the names of letters.  Luke knows the names of letters and their order so I thought I needed to get cracking on teaching him the sounds.  Silly me, I think he already knew a lot of the sounds.  I worked a little bit, mainly with the front of the alphabet one day and the next day I just though I would quiz him (gently) to see what he knew.  He knew them all.  Wow Luke!  He amazes me all the time.  That little brain picks up so much more than I give him credit for.  He is working a lot with our OT on tracing letters and he really likes it and has gotten into tracing letters and things all the time.  And of course, his favorite letter is "L". :)

Okay, so I did say Hannah too.  Well Hannah is everywhere!!!  Luke was never like this.  He was happy with his toys and he was old enough once he was mobile to listen and obey, to some extent.  Hannah is crazy.  We are finally baby proofing our house.  Thankfully she has only two teeth.  We have baby monitor cords and the cords to the light sensory bin just laying around, well did.  I found Hannah chewing on them one day and if there is a cord out accidentally she will make a bee line for it.  She also like to eat the wheels on Luke's walker, Luke's shoes, Luke's HME, and basically anything she can get her hands on.  She actually pulled Luke's HME off his trach and started chewing on it while he was watching "Signing Time" one day.  We are working on getting Luke to be more assertive and telling her "no".  She would also get into the sensory bins if she could, and has gotten close.  She pulled herself to a knee on our large box with activities all around and the wire and beads at the top.

So our house is moving a lot more, which is good for me, but can be exhausting to deal with Luke and have to make sure Hannah is in a safe place.  She ceased to be contained by her swing or a rocking chair bouncer thing when she got mobile.

Here are some pics, although not recent, we just haven't had time to process them, of the kids.

Luke in his walker!

Hannah going for the box of fun.

Containing Hannah in the Moby Wrap.

Sensory bin!

"Look mom, no hands"

Hannah not being contained by her rocker and working on figuring out how to turn the vibration on and off.

Tubefeeding book

A book was just published by a tube feeder for Tubefeeders and their families.  It is a guide on all things tubefeeding.  Check it out here https://www.createspace.com/3811540.  I have followed the author on his blogs and in forums and he is all about sharing knowledge and making things easier for tubbies.

I am researching AAC programs (communication programs) for Apple and Android mobile devices.  Watch for a review blog coming soon.

Oh and here are some pictures of the cuties: no super new ones but cute ones.

I will eat anything!

6 month shot

Gotta love a good tractor.

Luke and his flip up book.

Making a tower.

"Wow mom look how high"

Reading with daddy.