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.

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...

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.   

One long trip and some realizations

So I decided to take my 2 month old and my 2 1/2 year old on a state tour stopping to see doctors in Ann Arbor and Grand Rapids this past Wednesday.  My mom has already said "I told you so" in that this was not a good idea.  I in my logical, not dealing with small children in cars thought this would save us 4-5 hours of driving if we did it in two appointments.  I did not think about pouring rain, a very windy day, getting 3 1/2 hours of sleep becuase my baby didn't want to go to sleep, and what would happen when shutting a teething 2 month old and active 2 1/2 year old in a car most of the day would be like.  We made it and we are home.  My mom went with me and at one point only an hour from home we were not sure if we were going to make it.  But we did...I was sick the next day and my husband had to stay home from work to take care of the kids to top it all off.   So kudos to my mom for driving through crazy weather, construction, by accidents, a crying infant and with a Luke that needed suctioning often (mostly due to the weather and dry car air) and by the end was getting upset and pulling on his trach so I was turned around in my seat suctioning him.

So why did we go on this crazy adventure?  We went to a consultation with a doctor about jaw surgery for Luke.  Another Moebius girl we know in our state used this doctor for jaw surgery and our ENT (we share most of our doctors) recommended him.  I really like him and his resident and intern.  They were friendly informative and seemed full of action.  They are gathering some information from some of our other doctors and will be getting back to us with a full recommendation soon.  Luke did pretty good and the doctor got a good look in his mouth while he had his hands in it so we only had to hold Luke down for a very short time for a better look.  Luke does not like medical professionals in the office setting.   He does not care if they are only listening to his lungs or if they are trying to get blood.  It is all defenses up for it all.  And his mouth is one of the worst places you can try to look. 

Then we went to see our pulmonologist, for this first time since sleep study results from July were back.  She did not have full results from the October sleep study, only prelimiaries so we will hear more when they come back.  However, I was thinking that Luke was on the vent at night just for sleep apenea (possibly denial on my part) but our pulmonologist was clear that he still was not breathing adequately at night to be without the vent.  She said that during the day he does good because a different part of his brain (I can't remember which part) can help with breathing during awake time.  When Luke goes to sleep this part shuts off and leaves the breathing to the pons and medela or one or the other.  These two parts are not normal in Luke's brain and have been show in the literature to be abnormal in Moebius people.  She said that his breathing problems are in his brain and that there really isn't much we can do but wait and hope he grows out of them.  WOW, it really hit me that I am looking at Luke on the vent for sleeping long term, but not necessarily forever, and that the trach will be in long term as well.  I do believe God could work a miralcle and things could change shortly but we forge on ahead with long term ventilation for Luke.

It makes me sad as I don't want my baby boy hooked to machines when he sleep and have to breathe through his neck and all the extra care that goes with that.  I want him to be as normal as possible.  I am working on really coming to terms with that but I am not sure I am there yet. 

Luke however, is forging ahead.  He is now pulling himself to stand against furniture.  He walks along the furniture as well.  He is crawling fast all over and is trying to stand on his own.  He did have more stitches due to an accident with his walker, gravity and his glasses but seems no worse for the wear. 

Hannah is 2 months old and doing great.  She is teething (my family teeths early) and so has become a fussier baby.  She is sleeping through the night though, once she gets asleep.  She is smiling a lot and babbles and I think I have even heard her giggle.  She is generally a happy baby and loves to watch Luke do whatever Luke is doing.  She was baptized a couple of weeks ago and all sorts of family came to see her and Luke.  We had a great time.

Here are some not so current pics, but more current than the previous ones...

 

Our Family

Luke exploring his books in a new more accessible location.

Luke is playing on his hands and knees a lot.  Here is is checking out his letters, he loves letters and numbers.

Here is daddy with his kids :)

One of Hannah's many faces

Hannah holding her head up high.

 Luke signing "daddy"

Luke basking in the sun.

Luke coloring.