Monday, April 21, 2014

Easter et al.....

Amazingly, I am posting more pictures only a couple days after posting!  Well, I have a lot of picts to post.  That and I promised Micaiah I'd post photos of what we did today.  Yes, Micaiah is back in the hospital again.  Can that be possible?  I am getting the sense that this is the life we have embarked upon.  Micaiah's health is very fragile, and I think we will celebrate on the day he has spent more days at home than in the hospital, but right now, that day is pretty far off.

So today is Easter Sunday and on Thursday night Micaiah threw up after dinner.  He has a sensitive stomach, so that in itself is not real alarming.  But I do log all of these things.  The next day was Friday and he had his post op at the neurosurgeon's.  The last time he was there, he was admitted to the hospital for the infection on his myelomeningocele, and then had surgery a week later to close it, with all the ensuing details.  After three and a half weeks in the hospital, he has needed daily assurance that he was home and not going back to the hospital.  He needed all the more assurance as we headed back to the place it all began.

I promised him in earnest that he would be coming home and would not go back to the hospital.  That seemed a pretty easy promise since he was feeling well, and there was nothing -- as far as I knew -- amiss at that time.  I am not quick to make promises, because I take them very seriously.  And I meant it.  Unless his life were at stake, I would be bringing him home.  The post op went uneventfully, and we came home.  But that afternoon, as he waited for supper, he looked not well.  I figured that it was because supper was taking longer than usual, and he doesn't do well with that.  But he did not want to eat, and I could tell by his eyes that he was not feeling well.  I tried to give him some fruit that he likes instead, and he still declined.  I decided to bring him up to bed and try to make him feel better.  He was not himself.  Then as I got him ready for bed, there were more alarming details in his stats.  I hoped that a good night's sleep would bring things back to normal.  I ran out to the store and came home to find that he had thrown up again and Art was dealing with it.  More throwing up, diarrhea, a bad headache, and some other issues, and I began to really become concerned. 

I have experience with children.  I have pretty good intuition and instincts in these areas.  But this is a child that I have only met a few months ago, and most of it has been spent away from me.  And his health issues are so severe and so complex and so fragile.  Even very basic things could be serious with him.  It is a great responsibility and no chances can be taken.  We settled him again and continued to check on him throughout the night.  He was sleeping and I hoped all was fine but in the morning he had thrown up again and still his blood pressure was alarmingly low.  For a boy whose blood pressure is consistently high, this was all the more alarming.  A night's sleep did not do what I had hoped, and his headache and other symptoms continued.  I did all that I knew to do, but had to call the doctor since he would not eat or drink, showed all symptoms of dehydration at this point, and could not take his medications.  The doctor told me to bring him to the ER immediately.  

I did not think I could face him to tell him this.  There are so many times where it just seems to be too much, too difficult.  But despite it all, I had to face him and tell him the last thing in the world he wanted to hear.  And off he went with Art to the hospital.

He has faced some grave difficulties over the past 24 hours.  But tonight when we visited him, he had finally turned a corner, it seems.  He looked well and said he felt well.  Since his vomiting had finally stopped, he had finally managed to keep some food down.  Right now they feel it has all stemmed from a bladder infection, but we are still awaiting lab results.  We are very much hoping that the IV antibiotics are doing their work and that he may be released in the next few days or less.   He had just been starting to get into a routine.  He loves school, and we had just established bus service.  It is such an unfortunate setback.  This kid just can't seem to catch a break.  

So now I will post some photos from Easter, which I had not dreamt would not include Micaiah, but I hope he will look them over tomorrow and enjoy seeing them.

 First, an Easter morning photo of all our kids except for Micaiah.  
But look at the difference between this photo and our last family photo.  Hint:  look at Levi.  I'd say that's a big improvement!  A happy boy, looking at the camera!

 The three happy brothers. 

And here are single photos from after the family photo:



 Keziah Joy

 Levi (whom I did not realize still had Cocoa Puffs on his face)



 Well then....


 Candice, who doesn't like her picture taken.


 Laz thought this was hilarious.  Child restraints with a twist.

So we had a family discussion about celebrating Easter.  Some of our kids are getting too old for hunting eggs, and some of them just are not able to.  We wondered about something else we could do, perhaps a new tradition we could start that would involve everyone and that they all would enjoy without accumulating candy for kids who still haven't eaten all of their Christmas candy.    We decided to go to the early service at church, and then head over to the park with a picnic lunch.  

 I've been looking forward to bringing Levi to one of my favorite parks because it has a huge playground I had a suspicion he would love it.  He did. 

Hannah, the same as she was at three years old.

 Always looking for the most unconventional way to climb around a playground.

This boy had no fear.  He loved every bit of it.


 Canaan and Candice went paddle boating.

 And Hannah took some great, framable pictures.

 Can you tell who is who?

 And fun was had by all!

A few more things since last update:

 Hannah experimenting with some new pencil crayons she bought.  Captain America!

Hannah teaching the kids to do step dancing.

 With Canaan's wedding coming up, I figured it was high time I got a real haircut.

I like it.  Now to see if I can figure out how to keep it up. 

 So the school kids' "spring break" was Wednesday, Thursday, and Friday.  We tried to keep them busy.  Here Micaiah did some painting, which he enjoys.  I'd like to say that he did this painting, but he still needs someone to sketch something for him to paint first, and then he fills it in.  But he does enjoy it quite a bit, and it keeps him busy.

Levi came along and wanted to paint as well.  A chicken of course.  (what wig?)

 Well, if it makes him happy....

 Here is Laz in his new walker with his new AFOs on.  It is about the width of his wheelchair.  It has a seat so that if he cannot stand, it will hold him up.  He needs a lot of practice, but he is doing well.

Cats like boxes.  I don't know why.



As I saw online: "Cat first world problems:  "I want to sleep on the laptop, but nobody's using it!"  
Yes, this is one more reason why I can't get any work done.  She will come up and do this, right in the middle of my typing.  A tad presumptuous I would say, but hey, who's to deny that cuteness?  

And one more smile from our Easter weekend.  Hannah has always been our Steve Irwin, knowing everything about all animals, and having no fear in catching them and studying them.  From the time she was two years old she could catch birds, lizards, and frogs with no hesitation.  And yes, when there is a snake in the neighborhood, everyone calls Hannah.  She'll pick it up.  I can't think of very many things she shy away from except maybe spiders and slugs.  She doesn't like them.  Everyone has their soft spot I guess.  When we first moved to NC eight years ago, we were interested in the abundance of Canadian geese that are in our area.  So of course Hannah caught one - carefully - to get a closer look.

We visited Canaan and Candice's new apartment this weekend and Candice was telling us about all the geese nesting by the pond outside her window.  When she went down to take a look, a male goose dive bombed her, hissing and protecting his nest where the female goose sat.  Of course Hannah had to take a look too, and make sure her skills were not getting rusty.  I love how protective the Daddy is.  Every good Daddy is protective of his babies.

Click here for the Goose video!


Wednesday, April 16, 2014

So where were we?

Yikes!  A whole month has passed already?  And so much has happened in that month.   I was surprised to go back and read my last entry and see that Micaiah was still awaiting a visit to the neurosurgeon regarding his back.  It was just after I posted this that we were able to connect with the neurosurgeon who untethered Silas's spinal cord years ago, and he agreed to see him that very next day!

When he examined Micaiah, he noticed what we strongly suspected:  his myelomeningocele was infected.  For quite some time it had been having a smelly discharge, yellowish and red, but when we visited the other neurosurgeon's a week earlier, she did not think anything was wrong.  Well, it was infected, as we thought, and he was immediately admitted to the hospital that day.  Well, "immediately" is a generous word, because it took hours to get him settled in his room.  I was there in the early afternoon for the appointment, and did not leave until 9:00 that night. Art relieved me and did not leave him until after midnight.  Sparing you all the details, the admission process was very poor and we both had to advocate strongly to get him what he needed.  We were very disappointed in how he was treated, and we will be making our disappointment known to the hospital.

The very difficult part was when Micaiah realized he was being admitted to the hospital.  There is no way to explain these things to him, and no way to prepare him.  It's like a two year old in many ways.  He had been in the hospital for 10 weeks, and had finally come home for a few weeks.  The last thing he wanted was to go back to the hospital.  I tried to assure him (falsely, I later learned) that he would only be there for a short time.  He just sat there in the room and cried and cried.  It was very difficult for both of us.

So he was given IV antibiotics for six days, and then he had surgery to close the myelomeningocele on his back.  The surgeon did an incredibly good job.  It was a very successful closure.  There was only one problem. Apparently some of his spinal fluid had been draining from the myelomeningocele for all these years, and now that it was closed, spinal fluid built up in his brain causing hydrocephalus.  They tried placing a drain, thinking it was a temporary issue, but each time the drain was clamped, the vomiting and severe headache returned.  After three weeks, they decided to place a permanent shunt that goes through his brain and empties into his heart.  Once that surgery was done, he was able to come home two days later.  And he was very happy to do so!

And in the midst of all of that, life went on.  Here are just a few of the things from the past month:

 We'll begin with a very happy Kiki on her first day of school!  Yes, for several reasons, we decided to place Kiki into school.  She is in a kindergarten class for children with developmental delays.  There are eight children in the class and four teachers, so she is getting plenty of one on one attention which she has greatly needed.  With the added burden of caring for Micaiah, it had become impossible to do this at home, unfortunately.  This was a big concession for me, and a hard decision to make, but she is thriving and loving every day of school. 

She picked out her own backpack. 

For Maggie's birthday, Mr. Homer and Mrs. Cindy got Maggie fabric and a pattern to make her own tote bag.  Here she is putting it together on the sewing machine.

And the finished product.  Well done!

Levi is thriving.  He is doing so well and everyone he meets just loves him.  He is a happy boy and progressing every day.  He has a lot to learn and a long way to go, but when you consider all his past, it is just amazing how well he is doing.  He has learned so much English, and communicates well with us.  His attention span is getting better.  He is broadening his interests.  He is enjoying school and has the most amazing teacher.  She is truly a gift and just what he needed.  We are very thankful.

This is a little play house that Granny and Pop got for Maggie and Silas years ago.  They had outgrown it, and we were thinking of getting rid of it and then Levi spied it.  He has spent hours outside working on "his house".  It was in pretty poor shape from not being used, but he cleaned it all up and arranged it just how he wanted it.   He removed all the rocks and things inside on the floor and brought pine needles from across the yard to make a soft floor.  Then he arranged different things inside...

On the top of the house Hannah wrote "Levi's House" for him.  

 Look at the details inside here.  Everything deliberately arranged how he wanted it, including asking Hannah to draw a picture of a chicken which he hung on the wall inside.  :-)

He continued to work in spite of "visitors". 

Mr. Homer let Levi sit on his motorcycle.  When driving him to school I had noticed that he has a bit of a fear of motorcycles.  At first he seemed nervous about sitting on it, but once he got on it....

 ... million dollar smile!

Next step will be having Mr. Homer give him a short ride.  
Not sure if he's ready for it yet, but I think he would love it.

 Don't know what I would do without Hannah.  When Micaiah came home, our homeschool took a real kick in the gut because I had to (and still have to) spend so much time tending to his needs and taking him to his appointments.  Hannah had already been a huge help in schooling the kids, but she just stepped in and took over and wow, the things she does with them are so great.  She comes up with such creative ideas.  She reads to them every morning.  But she doesn't just read to them.  As she reads, they each have paper where they have to write down words, vocabulary, spelling.  She stops at every word she thinks they don't know and they talk about it.  She stops and asks them how to spell words in the story.  She has them draw pictures of what she is reading about.  She stops and asks them to recap what has happened so far, and then asks them what they think is going to happen next.  
She read through all the Narnia books, and then she started reading them Sherlock Holmes!  And they are loving it!  She challenges them to figure out the mystery and think about what is going on.  Then for a treat, when she finishes a story, she lets them watch the episode from Sherlock Holmes on the computer, and they love it.  Here they are watching an episode.  As you can see, everyone has their own way of watching. :-)

Laz is progressing and doing well also.  His motor skills are getting much better.  Here he stacked fourteen blocks and was so proud of himself!  I'd say that's pretty good for a kid who has spasticity and a lot of trouble controlling his movements!

The first true sign of spring... forsythia blooming.  I love it.

So pretty.

Our neighbors have a beautiful cherry tree that blooms every spring.   It is just glorious.

My sweet Ruby had her "surgery".  She did not take it well.  She was not herself for more than a week. She wouldn't eat, and seemed so miserable.  The vet said that some kittens don't take the anesthesia well.  She would just lie around.  But her friends came to visit her.  Here is Waffles giving her some sympathy.

And Pizza would just sit near her and keep her company.  Ruby is back to normal now, playing, eating, purring, sleeping on my face at night, and charming everyone.  As Hannah says, when a kitten grows bigger, you would think they would outgrow their cuteness, but Ruby just keeps getting cuter every day! 

Waffles sleeping by Kiki on the floor.  :-)

Some Eden sunshine....

 Joy unspeakable. 

Sweet pink girls in spring sunshine.

My girls.  <3 <3 <3

Oh, be still my heart. 

 Hard to get the perspective here, but this is Eden sleeping on Waffles and Ruby sleeping on Eden.  
The cuteness continues.

So one of the things Hannah likes to draw with is a Crayola black crayon.  She has a whole collection of crayon drawings now.   Here is a recent one of Sherlock Holmes...

... and the Winter Soldier from Captain America. 

The end of March we had a little shower for Candice and Canaan.  It was fun and we all had a good time.

Lots of food of course.

Canaan loves pie, so for dessert I made a "pie bar" with six different pies.

Next up is Daddy's birthday! 

Canaan replaced Hannah's starter in her car (with some *cough* help from Dad).  He was pretty proud of himself! 

And who is ten years old now? 

TEN?  That's impossible.  Wasn't it just yesterday?

My Lemonade, my Sunshine, my Singing Canary, my Daffodil, my Mystery...  where did the time go?

I made Frozen cupcakes with Elsa and Anna on them.

Eden has the best expressions and reactions!

I made the Elsa and Anna picks from card stock and tried to put the candles away from them, but several of them caught fire anyway, and it was absolutely hilarious. 

Good cupcakes.

A Lego set from Canaan and Candice.

She had requested a laser light to play with the kitten.

What could possibly make her so excited?

Daddy's gift to Eden.  Art's tradition is that when one of them turns ten years old, they get a pocket knife.  Well, as you can see, Eden was elated to really get one.  


And for your viewing pleasure, here is another example of the kinds of things that Hannah does with the kids.  She teaches them so many things, one of which is dancing.  Here is a video of one of their latest:

Click here to go to dance video.

And that about catches us up to date.  I'm sure there is much I have left out, and much more I could say, but this is the gist of things for now.  It is "spring break" here and all the kids are home, so I am very busy.  There is a little more than a month left until the wedding and so much to do. Many more thoughts I'd like to share, but if I don't post this, it will be another month until I do!  We are thankful and blessed.