Axel Update

Axel, 4 weeks old.

Jenna & Jake with Axel, he is about 2 weeks old.

Jenna & Axel.  so far this is my very favorite photo.

Yesterday Axel turned 4 weeks old.  His little personality is starting to show.  He has inherited a trait from his maternal great-great - grandma, he can roll his tongue! I found out that Jenna and both my kids can do the tongue roll as well. Not important to his health, but something I find fascinating nonetheless.

He has really improved in his sucking reflex and is taking more and more milk by bottle.  He still has his external shunt, hopefully that will be removed in the next few days.  As long as he has it, he has to stay and they aren't letting him be held.

He also still has his nasal feeding tube, I'm hoping that very soon he will take all his feedings by mouth.

Michelle reminded me today that when they first met with  neurosurgeon back in July, nobody expected this baby to even breathe on his own, let alone take a bottle, move, or cry. 

He still has a lot of problems, but he is so much stronger than we had hoped.  God has truly blessed him, his parents and all the rest of his family.

Death for the Believer in Christ

I feel that this post is very disjointed.  I have a lot of thoughts to get down and don't feel that I am connecting them in an understandable way.  Take from this post what you will, but know that it comes from the heart.

Death. It has a cold, solemn ring to it. The word brings to mind hopelessness, frailty, gut-wrenching sorrow, aloneness, and so much more.

Death is so final. So empty. So dead.

This week, on Tuesday, my kids will attend their first funeral. I hope that instead of the sadness, they will focus on the truth about death.  Death is only a portal through which the believer reaches heaven.

Some may ask "Why write about death?  Isn't death something that should not be talked about?"

To that I answer, Death for the Believer is not something to be feared.  Yes, mourn their passing because you miss their company and friendship. But as a believercling to the promise of heaven.  The hope of eternal life in Christ!

 A wonderful, godly man from our church died this past Friday from a massive heart attack. We’ve only known him for about 10 months and because of cancer we didn’t get to really know him well. We last saw him in December when he attended the Christmas program at church. He has 2 grandkids that are about the same age as D & S. He was more than a grandfather to T & B; he was a friend and a role model. They will be much affected by his death.

There is a song by Henri Malan (1787-1864) that speaks about death for the Believer. I learned of the song through Sovereign Grace Ministries. When I first saw this song, I thought of Gene right away. At that time we knew he had cancer and was given only a short while to live. My thoughts were not about the loss we feel when someone dies, but instead about the joy it is for a believer.

Original Words by Henri Malan (1787-1864).
Translated by George Bethune (1847).
Music, Chorus and Alternate Words by Bob Kauflin.

© 2008 Integrity’s Praise! Music/Sovereign Grace Praise (BMI). Sovereign Grace Music, a division of Sovereign Grace Ministries.
From Come Weary Saints. All rights reserved. International copyright secured.
Administration by Integrity Music.

IT IS NOT DEATH TO DIE

It is not death to die

To leave this weary road

And join the saints who dwell on high

Who’ve found their home with God

It is not death to close

The eyes long dimmed by tears

And wake in joy before Your throne

Delivered from our fears

CHORUS O Jesus, conquering the grave

Your precious blood has power to save

Those who trust in You

Will in Your mercy find

That it is not death to die

It is not death to fling

Aside this earthly dust

And rise with strong and noble wing

To live among the just

It is not death to hear

The key unlock the door

That sets us free from mortal years

To praise You evermore

Parental Rights Threatened

Protecting Children by Empowering Parents

The paragraphs that follow are taken directly from http://www.parentalrights.org/.  Click on the first line of this blog to be taken directly to the website.  I believe that it is our responsibility to fight for parental rights.  Because thay are implied in the Constitution they are at risk.  We need to make our voices heard and stand strong in our beliefs.

"Why Do We Need the Parental Rights Amendment

The right of parents to direct the upbringing and education of their children is presently a fundamental but implied right guaranteed by the United States Constitution. Yet one of the main reasons that parental rights are in danger today is due to their status as implied rights. That's because the meaning of an implied right is never entirely stable. Since parental rights are implied rights, the Court is free to redefine their meaning whenever it wishes. With international law poised to reposition parental rights into mere responsibilities, essentially robbing parents of their rightful place in a child’s life, the parental role and child-parent relationship is more endangered than ever before.
Though they seem effective on the surface, state constitutional amendments and state laws protecting parental rights are both insufficient to fully protect the right of parents to raise their children, for the simple reason that the US Constitution places treaties in a superior position in relation to state laws and constitutions. Additionally, the federal courts can undo any state level effort.
However, if the Parental Rights Amendment passes successfully, the right of parents to raise their children will become an explicit right and receive the highest protection in the federal courts. As an explicit right placed within the black-and-white text of the Constitution, the right of parents to raise their children will be protected by the federal courts as a fundamental right. This will place parental rights in an undeniably superior position to any treaty obligation entered into by the United States—overcoming the threat of international law, and guaranteeing the long-term protection and preservation of parental rights."

Axel Update

Axel is 3 weeks old today.

So far he has undergone 2 surgeries, a MRI, a feeding tube, antibiotics for an infection...

This little guy has been through a lot in his brief life.

His shunt started leaking CSF and then an infection developed, so they removed the shunt and have created a drain for the CSF that drains to the outside of his little body.

His personality is becoming evident. Mom (his great-grandma) told me that he doesn't like a noisy environment so they have moved him to a quieter area in the NICU. He also does not like it when he hiccups and when he is hungry he lets everyone know. And as soon as the milk hits his tummy he quickly calms down.

There are so many things that he is doing that we never expected him to do. He cries, he moves his arms and legs, & he is breathing on his own.

Even though we have much to be thankful for, Axel is still facing an uphill battle. I was told today that he has at least another 2 weeks in hospital.

We covet your prayers for Axel and his parents. I cannot imagine what Jenna & Jake are going through, anxiously waiting for their baby to come home, wondering what will come next, and on top of that, Jake is due to return to Nashville on March 4th.

Axel, 12 days old

Axel is 12 days old.  He has been taking a bottle, but can't get enough nurishment with a bottle alone at this time.The next step will be putting a permanent feeding tube in.  I believe he's scheduled for that on Monday 2/7/2010.

My prayer is that with the feeding tube, he will grow stronger and eventually be able to take all his food by mouth.
He is still in the NICU and his mommy and daddy are spending several hours with him each day.  The kids and I haven't seen him in person yet because of strict visitation rules at the hospital.  I can't wait to meet him in person.

Jake is scheduled to return to Nashville, TN on March 4th ( I think that's the correct date). In light of that please pray that Axel will be able to go home soon and that his mommy and daddy will have more than just a few days to enjoy being at home with him.

That's Michelle (Memaw to Axel) holding him and I think it's his mommy feeding him.  The second picture is hard for me to tell, but Jenna has blonde hair so I'm fairly sure on my i.d.

Axel's Diagnosis

We finally have a diagnosis for Axel's condition.

he has Complex Arnold Chiari type 3

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

with Hydrocephalus

http://children.webmd.com/tc/congenital-hydrocephalus-topic-overview

Good news, yesterday Axel took a small amount of milk from a bottle.  Today a speech therapist is coming to work with him.  I don't understand how a speech therapist can work with such a young child, but I trust that the doctors know what they are doing.

Pray for Jenna & Jake.  Only 1 week post partum and Jenna especially is exhausted.  Pray that she will be wise and make herself rest.

Thanks for all your prayers.

Update on Axel

Not a great picture as it was taken on a cell phone.  Hopefully I'll get some more soon.

Michelle just called to give me an update.  Axel is doing as well as can be expected for his condition.  He is maintaining his body temp and they extubated him.  The next hurdle is for him to either nurse or take a bottle well.  They will try a bottle today and hopefully he'll do well with that.

After he feeds well he will be closer to  coming home.

Continue to pray for him and his parents.  I'm sure they are getting tired physically and I know they want to get him home asap.

Jake returns to school in Nashville on March 4th, and that is going to be a strain on him, to be away from Jenna and Axel so much.  Pray for Jake that he will be able to concentrate on his education while he's away so that he will be able to graduate as scheduled.

Pray for Jenna as she learns to nurse and care for her new family.
Pray for Michelle, Jenna's Mom & my sister that she will be an encouragement to J&J and that she will not get too tired either.  If she gets too tired it can trigger health problems for her.

Please continue to pray

This is a photo of Jenna & Jake.

They are baby Axel's parents.  Please keep them in your prayers as they learn to take care of a baby that has severe limitations.  Pray that they will understand what the doctors tell them about Axel's condition and the care he requires.

Good Eating: Potato-Broccoli-Cheese Soup

Potato-Broccoli-Cheese Soup

10 small russets, skin on, chopped into medium dice

2 Cans chicken broth

1 Can Evaporated Milk

1 pound or so Velveeta Cheese

1 pound or so frozen Broccoli Florets, cut small

1/2 pound Bacon diced & cooked crip

1.  Cook the potatoes in boiling water until fork tender

2.  Drain potatoes and mash them up a bit with a potatoes masher or fork

3.  Add broth and evaporated milk & return to a medium heat, it has milk in it so   keep an eye on it so the milk doesn't scorch

4.  Add the broccoli.

5.  Chunk cut the cheese and add to the pot. 

While the soup is simmering cook the bacon and drain well.

After all the cheese is melted give the soup a taste  and season with salt and pepper as needed.

Serve garnished with bacon, shredded cheddar, sour cream & chives as desired.

Enjoy!

This soup DOES NOT freeze well.  The texture will be changed and become grainy.

We Have Snow

Friday night snowing.

Friday night snow-wheel not snow ballD& S and their friend D built a small fort by cutting and lifting the frozen crust of snow and making bricksOf course 'Ah-ker'  (real name Oscar but my favorite little person cant' say the 's' yet)  had to investigate and try to mark it as his!!

It is now Sunday Morning, Januray 31 and it's still cold and frozen outside.  We are staying warm and crocheting, reading, watching movies...

Tomorrow it's back to school for us even if the rest of the town is snowed in.

Living in  the Piedmont of NC, we don't get much snow, so travel is not safe when we have it.  There are no snow tires, or chains.  Only the main roads get plowed and treated and we hunker down and wait.

When bad winter weather is called for a mad rush to the grocery stores and gas stations ensues.  When Hubby and I went to gas up both cars on Friday, (they really needed it, I was close to fumes)  we had to wait in line! 

If you're not used to the reaction to the weather, you 'll think everyone is crazy.  The stores run out of the basics as everyone rushes to stock up.

When we first moved to the area in 1982, I thought it was crazy.  I was used to the weather in PA and wondered why people almost paniced at the thought of a couple of snow days.

Now 28 years late I totally understand.  And I might even make a run to the store if I think I'm short on supplies.

Oh well, the kids enjoy the brief respite from normal NC winter weather and have a blast while the snow lasts.

Grim Prognosis

Maybe we were premature in rejoicing about little Axel's health.  No matter what our Father is still in control, this news has not taken Him by surprise.  And it is because of the peace thet only He can give that I am able to write calmly right now.

The news from the scan of Axel's head is very grim.  The hydrocephalus was so bad that his brain did not develop.  The neurosurgeon said he will be an infant all his life.

Jenna & Jake have a long road ahead of them.  It will only be by God's grace and mercy that they will be able to stay strong and be loving parents to this tiny baby.

Pray.  Pray.  Pray.

Not only for healing for Axel, but for his parents.  For his grandparents, uncles, aunts and cousins.  For strenght to face the long road ahead.  For peace and wisdom.  For the doctors treating him, for the hospital staff that care for him.

We don't know what lies ahead.  There will be more procedures and he has to maintain his body temperature and be feeding from a bottle before he can be brought home.

Jehovah -Rophe & Wonderful news on Baby Axel!

Abortion.

Get rid of your ‘problem’.

It’s just a blob.

Everything will be fine and you can go on with your life.

These are some of the lies that are spouted by the pro-abortion, freedom of choice, Planned Parenthood folks.

THEY ARE WRONG!!!

This summer my niece Jenna was told that the baby she was carrying had Spina Bifida and Hydrocephalus.

The prognosis was very grim.

I fully expected this child to be severely handicapped. I wouldn’t have been surprised if he hadn’t lived. Even the last few weeks, when I heard that the ultrasounds showed that little Axel was moving and doing all the normal things that babies do in utero, I was still steeling myself and my kids for bad news at birth.

From all the original information Jenna received most people would have suggested abortion as the right thing to do. Reasons being, lack of quality of life, lack of funds, lack of ability to care for such a child.

I am completely horrified at the thought of abortion for any reason. When it was suggested to ME that maybe an abortion would be best for all involved and that Jenna should consider it I was disgusted with the thought.
To be honest, I thought that adoption was the best option for the same reasons.

But Jenna & Jake chose differently. They chose to raise this baby on their own. They chose to take the road less traveled.

And so when Axel Paul was born on January 26, it was discovered that the bulge on his neck that was thought to a very severe Spina Bifida, one that would possibly leave him blind, deaf, and probably nothing more than a vegetable is NOT Spina Bifida.

This little boy that could have been aborted because of potentially severe problems, was given life and it looks like his life will be so much better than we ever dreamed.

I told Jenna that I do not use the word awesome lightly. Truth is I never use it except in reference to GOD.

I’m using that word today! Axel’s good health can only be described as awesome. AWSOME because our awesome God, our JEHOVAH-ROPHE, our God who heals choose to touch this babe while still in his mothers womb and formed him without a severe handicap.

If that isn’t an AWESOME GOD then I don’t know what to call HIM.

Update on Axel

Just got word that baby Axel is having an MRI ( right now 1.40 pm)- and that they will be placing a shunt to deal with his hydrocephalus after the MRI.  There is also talk of placing a trach, but I don't understand the reasoning for that.

He is having a bit of problems, but compared to what we were told this summer it is obvious that he is soo much better than we anticipated.

For those of you who aren't aware this summer Jenna was told that he would most likely be a vegetable because of the severity of the Spina Bifida. Now we're looking forward to a much better outcome.  Please keep them in prayer as J&J learn to care for this precious child.  Caring for a newborn is tiring to the best of us and 

The problems he is having are:

• Not sucking well, may have to have a feeding tube
• Not swallowing well
• Can't or won't open his mouth wide

I'm very encouraged though by the blessing our Father has bestowed on Jenna & Jake in bringing  Axel safely into the world and by his problems being less severe. Pray for them as they continue to learn what Axel's health issuse are and as they starty a new season of like called parenting.

Jenna is recovering nicely from the c-section and we anticipate her release on Friday or Saturday.

I'm a GREAT_AUNT

Axel Paul is here!

January 26,2010 @ 2.30 p.m.

7 pounds 9 ounces

19 inches tall

Very active with lots of hair…(is the hair curly) Looks like it might be!

We are waiting to here more from the neurosurgeon, but as far as I can see, little

Axel is in MUCH better health than we were expecting.

As I get more news I'll update it here.