Thursday, February 28, 2013

Support Brings Hope

It is so important for everyone to have a support system.  It is even more important for families of a child with special needs to have a support system.  Sure, we have our doctors and therapists, they certainly do help us.  But who is there after our appointments, when we walk through the doors of our homes to work through the daily difficulties and try to implement all the important developmental exercises the doctors and therapists have advocated?  Our only recourse is family and friends (well, and, of course, God, but I am focusing on the "earthly" support system).

If you know someone who has a child, brother or sister, grandchild, etc. with special needs, please reach out to them.  Just a simple, "how are you doing?" phone call or email makes such a big difference in the day.  I remember a couple friends who called me a few time in James' first few months.  They (sisters) both left (separate) messages saying that they wanted to check in to see how we were doing, let us know that they were praying for us, they would be happy to do anything we needed, and not to worry about calling back.  That type of completely self-giving charity meant so much to me.

It is amazing how much we can learn from children.  This little boy would do anything for his friend.  Check out the lengths he is going to help find a cure for his friend's liver disorder (p.s. the friend has a g-tube).



With love.

Monday, February 25, 2013

Belated St. Valentine's Day


I meant to post this awhile ago, but it got away from me.  James got lots of love for Valentines' Day, which also happened to be the day he came home from surgery.  We gave him two Disney movies (I don't think we will do big Valentine's Day presents any other year, but when your kid is coming home from surgery #4 you get him a big present) and he got lots of fun cards and presents from family.  It was fun for him to come home from the hospital to the waiting Valentine's presents and cards.

And, by the way, February 14th is congenital heart disease awareness day.  We celebrated by staying in the heart ward at Children's with a healthy heart.  Yay!  :D

James rolled all over the place staring at his card from Nona and Grandpa Pilegaard:


James had fun with his balloon from Great Grandmom and Great Granddad Naughton:


With love.

Life is Always Beautiful

This story is beautiful.  The dedication of parenting, the amazing impact that any child can have on a family.  And the beautiful understanding that every life is valuable, everyone deserves love.  Children with special needs are a gift, we should flock to their unconditional love, we should aid parents devotedly caring for their children.  I hope that, as our family continues to grow, as James continues to improve, our hearts can be open to helping those living with the medical struggles we experienced.

I know that, before my experience with James, I was scared to lend a helping hand when it came to anyone with needs that I didn't understand.  I wanted to love them, I just didn't know how.  I wanted to help parents or siblings but I thought my help would be inadequate.  It turns out there is no secret to helping and loving different people in different ways.  Love is the same.  Help is the same.  Everyone needs help.  And everyone needs to learn how to offer and accept help.  It is a hard task.  It can feel like an insult to pride in accepting that you can't handle everything on your own or, especially, when offering a helping hand in a situation entirely new to you, one in which you are uncomfortably unfamiliar.  These situations push us to grow, they push us to draw closer to the love of God that leads us to greater love of our neighbor.  I pray that God keeps my heart open  with compassion and love for these families and their children.

An awful loss, a beautiful life, a daunting task

With love.

Friday, February 22, 2013

Normal Parenting Problems

I cannot tell you how wonderful it is to have normal parenting "problems":

1. James now likes to move everywhere at all times.  That includes while I change his diaper.
2. James thinks his feet are very fun and breakfast time in his highchair is a great opportunity to look at the brilliance of his feet.
3. We need to baby-proof.  This kid is getting into everything.
4. I had to comfort a crying baby who had opened a kitchen cabinet and pulled a pan onto himself.
5. Our kid is getting so big he is going to need a new car seat (this is still going to be a challenge as we work toward sitting).
6. My child is LOUD, in a happy way (but it doesn't work out so well at church).
7. I have to constantly do laundry to get James' meals off his clothing.

I thank God that he has given us the grace to learn what is important in life.  The graces we have received over the last two years are what have lead us here.  I tend to take things seriously, want to have complete control, and then get stressed and frustrated when things don't go my way.  And I know I will always struggle with this, but, for now I am seeing the fruits of our trials.  I can only giggle when James sits in his highchair, kicking his feet wildly and staring at them in amazement.  He still eats 200+ calories in under twenty minutes even with the foot distraction.  I think that is cause for gleeful laughter.  :D

So excited to eat!

All done!

Getting into the kitchen cabinets.
With love.


Saturday, February 16, 2013

Sitting Straight

Now that his belly is better we can really get into PT!  We bought a couple movies as a treat for James and little did we know he would work out while watching them.  He spent an hour sitting upright in his Bumbo!  He has never lasted longer than five minutes.  :D  Maybe we will let him watch more TV.  :D




With love.

Friday, February 15, 2013

A Better Belly

James' surgery went really well.  He was in and out in a little over an hour.  The surgeon informed us that the muscle around the tube site was damaged and part of the stomach had come through the muscle.  Because of this, the hole would not have closed on its own, but we would never have known until they opened the skin.

We got to see James about half an hour after the end of surgery.  He was snuggled into his little bed in recovery and opened his eyes as soon as he heard us walk into the room.  A few minutes later he mustered up the strength to lift his head and chat a bit.  His pain was under control until he moved into his overnight room, then, he lost it.  We had a hard time calming him down but Children's has a good selection of movies so we propped him up in bed and turned on Cars 2.  I have never seen him quiet down so fast!

He needed a little Tylenol to get him through the first night, but he slept really well (and so did we on those lovely hospital couches) and woke up in a great mood.  He ate his breakfast (his first meal in 36 hours) and we were discharged around 10.  We were all very happy to be home and James had a great Valentine's Day!

It was our first experience at Children's for surgery and we really liked it.  Everyone in the hospital is extremely helpful and friendly.  The nurses were great and very personable.  The only downside was that food was more of an issue.  Parents don't get food delivered to the room like we did at Fairfax and the cafeteria food was very limited and much more expensive.  We also didn't have as many choices for James.  Luckily, we brought some of his special concoction.

Here are a few pics from our hospital stay:


Waiting for surgery.  He was pretty happy until our start time was delayed an hour.

Waiting for our surgery room.
Engrossed in the TV post-surgery.

The view from our window.  Comforting on our ash-less Ash Wednesday.

A Valentine from one of the student nurses.

Check out how happy he was when he woke up the following morning:


With love.

Tuesday, February 12, 2013

Surgery - February 13

Hi, all.  James will have surgery tomorrow at Children's to close the G-tube site.  We don't know what time yet (they call the evening before) but it should be early morning.  This is "routine" and should only take about an hour with a small amount of time in recovery and home the same day.  We'll keep you posted!

James has been doing so much better!  He is eating like a horse and gained 2 1/2 pounds, all the weight he lost and then some!  The tube site actually looks a lot better and might (might!) close on its own if we let it be, but due to insurance we can't wait any longer.  We also think that the hole in his stomach is part of the reason he is struggling to poop and hope things will get better once it is closed.

He is moving everywhere and spending lots of time on his tummy now that the tube is gone.  We have been surprised by all the mischief he can get into now.  :D  Here is an example of one of his messes:


He is also training to join the Pilegaard Nerf Fights.  He needs a little more practice.  :D


With love.


Saturday, February 2, 2013

Recovering Little Pumpkin

Our little pumpkin is finally recovering nicely.  Three doctors' appointments later this is what we think happened.

The new mayo (with soybean oil) caused a more mild allergic reaction (meaning he wasn't vomiting uncontrollably this time) to soy and since he didn't expel it from his body wreaked havoc on his digestive system causing major constipation, straining, and lots of leaking gastric fluid which destroyed the beautifully closing tube site.  But, a week and a half and three enemas later James is finally pooping on his own and eating better.  He isn't up to speed yet, but he is definitely gaining back some weight.

GI wants to do surgery to close the hole but our pediatrician wants to wait a bit.  I would rather wait so we will talk to GI at our follow up and decide where to go from here.  We are lathering the area with neosporin and maalox to neutralize the acid and that seems to be helping.  At least he is much more comfortable.

We'll keep working!


On one of his hardest days I went in the other room to check emails while James quietly played.  This is how I found him.  It was 9AM and he had only been awake for two hours tops.  Poor little guy.


As he is starting to recover, sitting is getting more comfortable and he is back to his normal self.  He likes to rock out and make faces at himself in the mirror.



With love.