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.

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.

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...

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.

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.