St. Veronica and Baby Ella

St. Veronica is the woman who wiped the face of Christ while He was on His way to Golgotha.  For a brief moment she cared for God, bringing Him physical comfort in a simple act of love.

Baby Ella is a 3 month old baby, just a week older than James, who has been in the PICU at OSF since she was a week old.  Unbeknownst to her parents, Ella was born with a heart condition - the left side is too small - and it has trouble pumping blood throughout her body.  They didn't know this until she was a week old and they found her lethargic with purple, lacy veins all over her body.

Ella is the niece of Travis' childhood best friend.  St. Veronica is the patron saint of Ella's grandmother, and the saint whose intercession the family is requesting.

Travis and I visited Ella yesterday in the hospital, and she and her family really need our prayers.  A trach has improved her life, but she has so many battles ahead of her.  Ella's grandmother told me how Ella's mom is doing, and I was instantly reliving our time in the NICU. 

Having your heart break over, and over, and over again.  Feeling desperate, unable to hope.  Believing that you cannot go on.  Worried about your child, your other children, your own future.  Swallowed by bills.  Engulfed in grief.  Tired.  Overwhelmed.  Overstretched.  Afraid.  Angry. 

Please pray for Ella.  Please pray for her parents, J and V, and her brother, N, and her grandparents and all who love her.  Please pray for her doctors and nurses.  And please pray for healing.  Please ask St. Veronica to bring comfort to the family and to intercede for healing.  When I could not hope you hoped for me.  Let us do the same for Ella.

To check up on Ella, visit her website.

a few faq's on little boy blue and the miracle

How did the cookie swallow go?
The little booger butt refused to eat during it.  After a half hour of trying we had to move on.  But, after visiting his old nurses and doctors in the NICU he immediately gulped down a 4 oz bottle.  I told you he was a booger butt.

What were they looking for with the second MRI?  Why were they doing it in the first place?
Well, we knew that there would be brain damage because of his diagnosis - severe perinatal asphyxia.  That was confirmed by the first MRI.  Sometimes the initial damage from the trauma can be followed by more damage.  The second MRI was checking to see if there was any new damage in the brain.  The doctors were looking for how extensive the damage was, they were not looking for healing.  (!!!!!!)

I thought his brain was healed, why does he need therapy?
James still has to fight through the residual effects of not having oxygen and being cooled.  Feeding therapy is needed so we can monitor his swallowing coordination, and ensure that he is eating safely.  Physical therapy is needed to help with the muscle tone in his legs.  We will especially need to help him with his right leg, which has a fair amount of scar tissue because of the chemical burn.  We'll need to massage and stretch his legs to help him gain full range of motion.

Will this be a miracle for Archbishop Sheen's canonization?
We don't know.  I spoke with a sister in the Diocesan Sheen Foundation Office.  She was very excited to hear the details, but didn't know what would happen.  Because the Diocese of New York refuses to return Sheen's body to his home diocese (the Diocese of Peoria - where I live) they will now have to be the ones to pick up the canonization process.  (I don't know why, but the diocese that is pursuing the canonization needs to have the body.  I know, that's a weird Catholic thing.  But I promise you there is a good reason for it.)  However, we do not know when or if the Diocese of NY will begin to pursue it.  In the meantime, the Diocese of Peoria has asked that we share all medical records and a narrative of what happened with James.

To my knowledge there are already two reported miracles connected with Archbishop Sheen, but I don't know where those stand with the Vatican.  Also, medical personnel will have to say there is no medical explanation for what happened.  I'm not sure if the doctors will say that, they may want to give credit to the cooling pad, or the amazing abilities of the human body.  But many nurses and our family doctor have commented on the power of prayer and the goodness of God. 

How does it feel to have this gift from God?
I don't have the words to tell you.  When the nurse first told me the results she commented on me needing to be pinched.  I told her that I was excited but I was expecting to hear that he was healed.  And it's true.  I knew that I was asking God something huge - to see a healed, normal, healthy brain in the next MRI - but I felt that He just might do it.  And so I wasn't surprised that He did.
 I keep thinking, "I can't believe it!  But I can believe it!"  I guess that probably gives you the best idea of what it's like.
Oh - and if you see me choked up, teary-eyed, or outright crying it's probably because I'm so grateful, excited, joyful, relieved, humbled, awed.  You can feel free to join me.

cookie swallow #4

Hey friends,

James will be having another cookie swallow today at 1:30.  Just a reminder, a cookie swallow is a test using x-ray film that shows us how well James eats.  Right now James is on the thickest feeds possible, and we are hopeful that we can move to a thinner liquid.  If we move even one step thinner we can begin to use my stored breast milk, which would be great!

Please say a prayer (or many!) that James will do well and show us that he can safely eat normally!

Eternal Father, You alone grant us every blessing in Heaven and on earth, through the redemptive mission of Your Divine Son, Jesus Christ, and by the working of the Holy Spirit.

If it be according to Your Will, glorify Your servant, Fulton J. Sheen, by granting the favor I now request through his prayerful intercession - that James Fulton's cookie swallow goes well and he is able to eat and drink normally. I make this prayer confidently through Jesus Christ, our Lord. Amen.

In the Bleak Midwinter

I give Him my heart.

It seems that Bishop Sheen has been involved in the healing of another baby who had a traumatic birth. 

Read this article - you'll be amazed with the similarities!

Thanks be to God!

the long awaited MRI results are in

The nurse called today with the following message (all medical terms are spelled phonetically and are probably not correct):

- The white matter of James' brain is appropriate for his age.
- No cortical displacia (no inflammation)
- No hydrocephalus (no extra fluid)
- All arteries are patent (blood flow is good)
- All regions appear normal
- No abnormal intercranial enhancement

What this means is there is NO BRAIN DAMAGE!!!!

I made the nurse read through everything twice.  I asked her if it meant what I thought it meant - no brain damage.  I asked her if she was sure since his first MRI showed brain damage and he had no pulse for 61 minutes.  She verified with the doctor - everything looked normal. 

I asked her how it would happen that a damaged brain would heal and she replied, "A miracle.  But the human body is amazing, especially the brain, and especially in one so small."

I know the human body is amazing, but so is my God!  We are confident that He has answered our prayers (yours and mine!) and healed my son!  There are some residual effects of his initial trauma (for instance, he still needs thickened feeds and physical therapy for his legs) but he has met every developmental milestone of a three month old, and we are confident that he will continue to do so.

Thank you for your prayers and support!  And thank God for His goodness and generosity!  May our God be praised!

wonder boy

We're still waiting to hear the results from the MRI, and today is our Early Intervention meeting where we'll discuss JF and establish the EI version of an IEP.  (That was a lot of abreviations for one sentence!  Hope you're still with me!)

So as we all wait, please feast your eyes on our strong little JF and his big brother Ben, who loves JF so.

7 quick takes

-1-

Yesterday was a baking day at our house.  Mom, sister-in-law, L and I tackled peanut butter cookies, sugar cookies, chocolate crinkles, snickerdoodles, orange shortbread cookies dipped in chocolate, chocolate chip cookies, and spritz cookies.  It was a lot of fun and produced a ridiculous amount of sweets.

Clearly.

-2-

Today we be visited by a therapist of some kind.  She's going to assess JF so that at the Early Intervention meeting next week everyone will have a good picture of how JF is doing six weeks after leaving the hospital.  I think she's going to be impressed!

-3-

Speaking of JF... he's three months old now!  Isn't that amazing?! 

-4-

Here's a quick confession:  we haven't been very good about the Jesse Tree.  We don't do it daily, more like every four days.  It's there, it looks good, L loves hanging the ornaments on it, but for some reason I just walk past it time and time again.  The other thing I should mention about the Jesse Tree is that it's really hard to explain ancient prophecies to a two year old who - for some reason - has a hard time even remembering the names of the first man and woman.  If it's a religious-y kind of question L usually defaults to "God," "Jesus," or "Mary" as her answers.

-5-

I've been updating my little recipe box blog a lot more recently.  There's a couple good, new recipes over there, if you'd like to check it out.  There's also some weekly menus.  My hope is to be more consistent with weekly menus, and incorporate some of the delicious meals that people made for us into them.  I encourage / challenge you to leave your latest meal plan in the comment box of my meal plan, or post your own if you too are a blogger.

-6-

Quick Reminder!

If you haven't registered for the Behold Conference yet, you only have eleven more days of mail delivery to get yours in and receive the $10 discount! 

I registered - I hope to see you all there, too!

Go to http://www.beholdconference.com/ for more information, and to print off a registration form.

And please remember that there are partial and full scholarships available for those who cannot afford the $35 registration fee!

-7-

Because of how great you all have been in supporting my family and me since JF's birth, and you are deeply connected to us through your prayers and sacrifices for JF's' miraculous healing,

You are warmly invited, during the joyful Season of Christmas, to help us celebrate JF's miraculous life and his Sonship of the Father.

JF was Baptized at birth, but the anointing and godparent promises will  be celebrated on

Sunday, January 2, 2011

during the 9am Mass

at St. Luke's Catholic Church

Eureka, IL

A celebratory brunch will follow in the church hall.

I had to give myself an NFP pep talk

**Just to warn you, this post may contain too much information.  Especially if you're my grandparent, or cousin, or acquaintance from church, or one of my husband's students.  There is the potential for both of us to be very embarrassed if you read this.  However, if you're a good friend or stranger I really don't care - read on!**

When it comes to outsiders, it seems that AC's and granola-y people respect Travis and my decision to practice NFP best.  It shows a deep trust in God and a basic belief that children are blessings (which the Apostolic Christians appreciate) and it's totally green, especially since in my 4.5 years of charting I'm only on my second booklet of charts (which the earthy people like).

And then there's the others like me, a bunch of orthodox Catholics (perhaps you think of us as fanatics).  Get a group of ten of us together and five will be pregnant, three will have newborns, and the other two will be trying to conceive.  Basically that's a true statement.

We practice NFP because we know that God can be trusted, and children are blessings, and it builds our marriages.  But sometimes the only reason we're practicing it is because the Church tells us to do so.  I mean, when you're going on three months of questionable signs and no thermal shift, which are following months eight and nine of pregnancy number three in two and a half years, well the only reason you're practicing NFP is because the Church tells you to do so.

And to do something because the Church says so is not a bad reason.  Sometimes our emotions get the better of us, logic goes out the window, and we have to have some one or thing to tell us what's right and what's wrong.  It's especially nice if that something happens to have two thousand years of the best theologians, philosophers, scholars, saints, and Christ Himself.  (This was reaffirmed time and again in the NICU.)

Please understand, I am glad we use NFP, and even though it can be very, very hard at times, it does have its perks.  Like L, Ben, and JF.  And making out.  Because when you can't "go all the way" you can at least make out.  And making out is a lot of fun.  Kissing is fun.  And it's a lot less messy than "it", morning sickness, giving birth, poopy diapers, laundry, spit up, food thrown on the floor, toys scattered everywhere, crayons on the wall...

If you want to read some other thoughts on NFP, I encourage you to check out It's Time to Talk Honestly About Natural Family Planning by Simcha Fisher.

story from today's MRI

Scene:  surgery prep room.  James is laying on a bed, cooing, smiling, looking at the nurses, and waving his hands.  RN and ANL (Anaesthesia Nurse Lady) talk about the upcoming procedure - an MRI for which James will need anaesthesia.

ANL:  So what's the reason for the MRI on James?

Me:  Well, he was a stillborn and he didn't have a heartbeat for 61 minutes.  So he was cooled -

ANL interrupts my explanation.

ANL:  You mean 61 seconds, which would be a minute.  You said 61 minutes, which would be an hour, but you mean 61 seconds.

Me:  No, 61 minutes.  He was born at home, and chest compressions and mouth to mouth was done for 20 minutes.  Then about 20 minutes in the ambulance and 20 minutes in the ER.  Right when they gave up and quit his heart started to beat.  It was 61 minutes. 

RN and ANL look at James in disbelief. 

RN, with a shocked grin: He's a miracle baby.

Me:  Yes.  So they cooled him...

________________________________________________________________________________

I'll know the results from the MRI by the end of this week.  Little Boy Blue is such a champ - he was so well behaved for being so hungry (he couldn't eat after 3am).  Here's hoping the results are good!  Come on, Fulton Sheen!

James' brain

Today we saw the neurologist.  He was "very impressed" with what he saw in James.  Of course it helped that James smiled, cooed, giggled his way through the visit.  James' legs and reflexes were also impressive and the doctor feels that we are right to be hopeful that James will do all the things regular kids do - crawl, walk, run. 

Tomorrow morning at 8:30 James will have another MRI.  Please pray for safety, since he will be given anesthesia.  Also, please pray that he will recover quickly from "being out."

And most importantly, pray that James' brain will be healed!

update on James Fulton

First off, THANK YOU to all the people who are still praying for my son!

Some updates:
- we haven't seen a tremor in weeks.
- his legs are much less stiff than when he was in the hospital and it is much easier to stretch them out straight.
- he's over the flu and is eating normally again.
- his cradle cap is under control, and he looks much more like his handsome self.
- we haven't used the g tube since December 3rd.  Two months and 3 weeks more and then we can get rid of the thing all together!

Some things for which he still needs prayer:
- improved strength in neck and core.
- improved head control.
- reaching goals of rolling over, reaching for toys, and mini push-up by four months.

On Tuesday James will have another MRI.  I am still praying that, miraculously, the MRI will show a completely healthy, normal, healed brain.  Would you please join me and Archbishop Fulton Sheen in praying for a miracle - that James' brain will be healed.

I know that God will do what He sees best, but there's no harm or shame in begging.

Eternal Father, You alone grant us every blessing in Heaven and on earth, through the redemptive mission of Your Divine Son, Jesus Christ, and by the working of the Holy Spirit.

If it be according to Your Will, glorify Your servant, Fulton J. Sheen, by granting the favor I now request through his prayerful intercession - that James Fulton's muscles function normally and his brain is healed. I make this prayer confidently through Jesus Christ, our Lord. Amen.

Rejoice!

Gaudete Sunday is here!

kids like him

Recently I was telling someone about JF's personality.  He is fairly laid back, smiles a lot, and only cries if something is wrong.  He has a whole list of things that are going wrong (I think I've spoken to or seen a doctor or nurse every other day since he's been home - and I'm not exaggerating) including diaper rash with a bit of yeast infection, leaking g tube, last stage of flu, special way to eat and sleep, eczema, cradle cap on entire head with a spot on his temple that weeps and continues to get bigger.  Yet, despite all of this, when he's full and not sleepy he's very pleasant.

The person I was speaking with (was it a nurse?  a parishioner?  you?  I don't remember.) said sweetly, "Yes.  Kids like him are usually so happy and content, even with all their problems."

Kids like him.

It felt so patronizing and judgemental.  I don't know if she realized it right after she said it, but I think she did.  Oh!  All the little retards - they're so cheery, aren't they?  It's like they don't even know how miserable they should be.

_____________________________________________________________________

Maybe you read Conversion Diary's post about an intellect's experience having a mentally disabled son.  The article is very good, and worth the trip to her blog.  The part that was most interesting and alarming to me was what a commenter found about Martin Luther's understanding of "special needs" kids.

Eight years ago [in the year 1532] at Dessau, I, Dr. Martin Luther, saw and touched a changeling. It was twelve years old, and from its eyes and the fact that it had all of its senses, one could have thought that it was a real child. It did nothing but eat; in fact, it ate enough for any four peasants or threshers. It ate, shit, and pissed, and whenever someone touched it, it cried. ...  I said to the Princes of Anhalt: “If I were the prince or the ruler here, I would throw this child into the water–into the Molda that flows by Dessau. I would dare commit homicidium on him!” ... the changeling child died in the following year…. Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.

Source: Martin Luther, Werke, kritische Gesamtausgabe: Tischreden (Weimar: Böhlau, 1912-1921), v. 5, p. 9.

When JF was still in the NICU I would look at him and think, "You are a changeling.  My real son died inside of me, and you were swapped into his place."  Of course that is dangerous thinking and I never allowed myself to linger too long there, but I was deeply troubled when I saw that Luther gave children like my son a similar name.  This is not to say that agree with Luther about throwing anyone in the river, or believing that JF has no soul!  Only the use of the word "changeling" is the same.
__________________________________________________________________________________

I am starting to feel exhausted.  I am tired of calling doctors' offices.  I am tired of cleaning up the contents of JF's stomach.  I am tired of fearing that he'll throw up at any minute.  Basically, I feel like I'm failing at mothering him.  I don't know what I should be doing better, but my best is definitely not good enough.

Travis and I have decided it's all the fault of the g tube.  Damn g tube.

sick kids suck

I am tired to cleaning up puke.

I am also tired of extra tantrums.

And grumpiness

And snot.

And 10 poopy diapers in a day.

And all this laundry!

Doctor appointments, medicines, ointments, extra crying, extra whining.

UGH!

Juan Diego Giveaway

Hey folks!  Head on over to Catholic Icing and enter to win a copy of Juan Diego: Messenger of Guadalupe!

how I pull off St. Nicholas

I received this comment, and I think it has a lot of good points and good questions.  I'm going to repost it here, and respond.  I know that many of my friends have gotten rid of Santa and just have St. Nicholas visit their home during the holiday season.  I would love for you too to respond and share how you make Catholic culture jive with the rest of culture - I think it's important that we not ruin other kids' Christmases filled with Santa, elves, and reindeer!

How do you deal with the culture, the friends, the strangers, preschool, asking your child what they want from Santa? have you been a good girl for Santa? is Santa coming to your house?


When they are in school are you going to tell them that there is not a Santa from the North Pole? Is it okay that they tell their friends that? I have not told my 3 year old anything about Santa, but she knows from others. We talk about Jesus' birthday, but it almost confuses me how to fit in the birth of Christ, St. Nicholas, and Santa?? How am I suppose to explain it all to a 3 year old.

I hate the idea of making a big deal of Santa, but I also feel like I can't escape it??

What are your recommendations?
 
My Answer:
What we do is explain that other people call St. Nicholas "Santa Claus". When L sees pictures of Santa she calls him St. Nicholas. Also, we tell her that he lives in Heaven with Jesus. That hasn't been challenged yet, but I guess we'll just tell her that some people think the North Pole is Heaven, but we call it Heaven.


I don't have a problem correcting L's understanding of St. Nicholas.  Ex: "Some people think St. Nicholas lives with elves, but really he lives with angels, Mary and Jesus."  My hope is that when my children talk with Santa-believing kids they will say the same types of things.  "At our house, we call Santa St. Nicholas."  It will take training, of course, but I think it's important not to mess up the traditions other families are doing, while teaching my children to be little apologists.  Then if little Sally goes home and asks her mommy about Santa's real name it's up to that mom to do whatever damage control she wants - just like I have to do damage control.  But when kids still believe in Santa/St. Nick (just different variations) there is little damage control to do.

If a grandma tells L that Santa left some gifts at grandma's house for her, I instantly say something like, "Oh L, wasnt' that nice of St. Nicholas?!" I don't want to "ruin" everyone else's fun - because Santa IS fun - but I do want to slightly edit it so it can fit into what is important to our family. And usually, grandma will then refer to Santa as St. Nick when around my kids.

For people who don't know my family (store clerks, nurses, etc) I say things like, "We celebrate Advent before we celebrate Christmas." or "St. Nicholas fills our stockings for his feast day on December 6th." A nurse recently told my kids that the vent was a camera that Santa watches to make sure kids are good. I said St. Nicholas watches us from Heaven so he knows how he should pray for us.

About this comment:  "We talk about Jesus' birthday, but it almost confuses me how to fit in the birth of Christ, St. Nicholas, and Santa."  This is the very reason I took Santa/St. Nick away from Christmas completely.  I didn't know how to do it, either!  And by consolidating Santa and St. Nick - well that made things a lot easier.  Now, I'm slowly easing my way into all this, but I do hope that through the years we can spend equal amounts of time talking about St. Nick, the Immaculate Conception, Juan Diego, Our Lady of Guadalupe, St. Lucy - all saints with feast days during Advent.  My hope is that will make St. Nick just one of many saints who help us get ready for celebrating Christmas, minimizing his role in our household even more.  I mean, as great as St. Nicholas was and is, his rightful place is waaaaay behind Jesus - and I think St. Nick would be the first to agree to that.

All of this can be hard, and I know I don't do it perfectly.  In fact, we have a loooong way to go.

I would love to hear how other people work with St. Nicholas to keep Christ the center of Christmas.  How do you address the issues the commenter mentioned?

Happy Feast of St. Nicholas!

(new pj's from St. Nick.  JF is spending tonight at Grandma's... so he's with us in presence with his pj's in the back.)

My open letter to Santa Claus

First published January 13, 2009.

Dear Santa,

First, may I call you St. Nicholas? I'm much more comfortable with that name.

So St. Nicholas, now that the holidays are over I'm writing to tell you that I'm very concerned. I mean, what happened? For hundreds of years you were this beloved saint, a bishop who loved children and saved three sisters from a life of prostitution. You supposedly punched out a heretic at the Council of Nicea and then proclaimed the Truth. You were cool before cool was a word.

But now you're seen as just being a fat guy in some silly red suit. Sure, people think of you as jolly and an all around good guy, but you've been stripped of all your coolness and left as little more than a large elf who gives overindulged kids whatever they want for Christmas.

I've been thinking about it all and I guess it all began to shift with Clement Clarke Moore's 1822 poem Twas the Night Before Christmas. It's a sweet poem; I'm sure you remember how I had it memorized as a small child. Yet, it removes all of history and Christianity, pretty much changing the very essence of who you are.

Then Coca-Cola got hold of you and there was nothing left of the man you once were.

So I want you to know, St. Nicholas, that things are going to be different in my home. Of course my kids will "believe" in you! You're a real person! A saint in Heaven! But, with all due respect, I don't want you coming to my house on Christmas Eve. And I don't want you giving my kids an overabundance of presents. I would quite prefer if you came the night before December 6th and filled their stockings. That way, on your feast day (the 6th) we can talk about you and celebrate your life as a holy man who lived for Christ. Christmas morning my husband and I will give our children a few presents, and we'll even give them another gift come Epiphany, as we discuss how Christ is the True Gift of Christmas, and how the Wise Men gave what they had to Christ to honor Him. Maybe the Epiphany presents will consist of sacramentals? I do need to think about that one some more. Any ideas?

Also, I don't think we'll be making any more trips to see you at shopping centers. Instead, I would like to invite you, Bishop of Myra, to come to our house for a St. Nick party. I'll invite all the kids I know and when you come, dressed with your miter and crosier instead of a hat with a pompom, you can ask the kiddos what they're doing to prepare for the birth of Christ, instead of asking them what they want for Christmas. My hope is that this will help my family keep Advent, as we prepare ourselves for the Incarnation, and also shift the focus of Christmas away from you and back to the Infant Jesus.

I think this is a win-win situation. My kids will (hopefully) learn more about you as a saint, will see Christmas being less about presents and more about Christ, and will grow up rooted in the traditions of their beautiful faith. And you will regain some dignity in the way you're represented and I'm quite confident you'll rejoice in the way the glorious feast of Christmas is refocused on our Lord and Savior.

If you have any ideas or suggestions I am definitely open to hearing from you.

I am, most respectfully, yours sincerely.
Bonnie E.

P.S. Please pray for me and my family and give Peter a big hug.

a fun filled Friday night

Poor JF had trouble keeping things down on Thursday night.  Friday morning he didn't keep down his feeding or phenobarbitol.  At noon he took 3 oz which he did keep down (thank God!).  At 3 he wasn't interested in food, at 4 we went to the doctor. 

At 5 we went into a ditch.  The roads were slick!

At 6 we were pulled out and home.  The kids went to bed and we thought JF would be ready for some more food.

At 8 JF threw up his food and phenobarb (we tubed both since he was still uninterested in a bottle) and I once again took advantage of having our family doctor's cell phone number.  No wet diapers in hours and no more tears.

By 9 we were on the way to my parents' with the kids.  By 11 JF, Travis and I were in JF hospital room. 

An overnight stay, an IV, a few wet diapers and a few good bottle feedings later and we should be discharged soon. 

This was not how I had pictured spending the first snow of the season, but thankfully JF is safe and on his way to being 100% healthy again.  Thank you for your prayers for safe travels and restored health.

If you ever wonder if God answers prayers, I want you to know that JF is the answers to your prayers.

7 quick takes

-1-

JF is working off a bit of the flu, I think.  None of my other babies had the flu, probably because of all the awesome breastmilk I was able to feed them.  This little booger just can't seem to catch a break.  But at least he doesn't have acid reflux!

-2-

Some friends bought us a Swivel Sweeper.  Beb l o v e s it!  And I don't mind that he loves it because he's actually cleaning my house as he pushes it around.  Yes-uh!

-3-

Here's the Advent Wreath L made with some friends.  It was inspired by a CCD project from my youth.  Play do, cheap greens, and birthday candles.  I couldn't find purple candles, though.  If you see some - tell me!

-4-

Our Jesse Tree.

A friend invited a group of her friends to take part in a Jesse Tree exchange.  There's 28 ornaments, but each person only had to make one ornament, just 28 times.  So then, in the end, we all had a set of Jesse Tree ornaments completely home made and unique.  What a great idea, eh?!

I made the bloody door out of popcicle sticks and red craft paint because it seemed to be the easiest one.

-5-

He is so cute!

-6-

This is a "what a small world" story.

On the phone with our family practitioner, Dr. M, he mentions to me that he'd met my cousin, Steve W---.  I was positive I had misheard since Steve lives near Aurora so I asked him to repeat the name.  Sure enough, it was Steve W---.  Turns out that Mrs. Dr. M is from the same town as Steve and her brother and my cousin were good friends in high school.  The brother recently got married and Dr. M and Steve were both groomsmen.  During small talk it came out that Steve had a cousin who lived by Dr. M, and the cousin just had a baby, and yada yada, and Dr. M realized it was me.

What a small world!

-7-

L was drawing, and looked up at me with a big smile and said, "Look, Mama!  I drew a triangle!"  I know I'm her mom, but I think that's pretty darn good for a 2.5 year old to draw a triangle like this all by herself.

Winter Wind

We're going to get snow around here. I am very excited. Snow makes this season even more beautiful. In honor of the weather, here's a song by Mumford & Sons. It's called Winter Wind but it's not really about the cold... it's a love song... We'll pretend it's about winter.

learning curve

At midnight JF awoke and when I picked him up I noticed he was soaked.  What seemed to be almost the entire 3 oz from his last feeding had soaked through his onesie and sleeper and blanket.  When I undressed him the acidic formula was pooled on his belly and as I wiped it up more came out, along with some fresh blood. 

It was kinda gross - especially the smell, which is the smell of barf.

We cleaned him, cared for the g tube site, dessed him, and I gave him another 2 oz, which he then threw up all over.

So I cleaned myself and changed clothes while Travis did the same for JF.  And then I gave him a paci and put him to bed. 

At 3am he was wet again.

At 6am he was wet again and crying hysterically.  We didn't give him any more formula but Travis took him downstairs to watch the morning news and that calmed him down.  Meanwhile I was on the phone with our family practitioner, who was probably regretting telling me that I could call him on his cell phone any time.

At 8:10am I finally got ahold of the surgeons office and was told to come on in.  The magic words were "no wet diaper since 8:20 last night."

The problem?  There tube had snaked down into JF' belly and there was an extra 4 cm of it inside him.  So the "balloon" at the end of the tube which holds it against the wall of the stomach was bobbing around on the sea of stomach acid.  As soon as the CNP took the extra tube out JF was happier. 

And then, in a wonderful move, she took the tube out and replaced it with a button.  The button snaps shut and lays pretty flat against JF's belly.  We can hook a tube up to it if we need to, but since we give him all his food via bottle and have been told how to give him his siezure medicine orally, we hopefully won't have to use it, and can get rid of it in 3 months or so.

For those of you who are in it for the long haul, would you please do me a favor and make a few prayer requests for me? 
-Please pray that JF will lose the button and be able to eat and drink normally for the rest of his life.  (I've recently learned that some kids with neuro problems will stop eating suddenly years down the road.)
-Please pray that JF never develops acid reflux.  We are very afraid of that possible development.
-Please pray that his muscle tone will be normal.
-Please pray that his mind will work well, that he will be able to talk, think, read, write, and create at age appropriate levels.
-Lastly, please pray for me and Travis.  We feel so overwhelmed by the amount of knowledge that we're supposed to retain, skills we're supposed to develop, and paperwork we're supposed to read through.

Thank you and God bless.