Monday, September 13, 2010

You are in for it.

Yup. I have lots to blog about. Seems I haven't really blogged (aside from J-man updates) since JULY!!! What happened. It's all mapped out and headed your way. Like 15 blogs. Wow. Funny thing is that 3 of my friends have just or are in the process of the same blog purge that I am about to embark on. Summer just sucked our time I guess!

Friday, September 3, 2010

Echo

Echo results are in... everything looks good. He still has a PDA (Patent Ductis Arteriosis). Usually these close w/in a week of birth. We knew it was still open. He is being followed by cardiology and will be seen in November. Since all of his functions (breathing, growing, life in general) are good, there is no concern. Just another "to be followed".

Thursday, September 2, 2010

And the latest...

God is good again and again.

Monday we zoomed over to Fresno for Joshua's CT scan. I was so nervous because he couldn't eat after 11:30. The scan wasn't until 3:30 (if they were running on time.) The boy normally eats every 2 hours, so a 4 hour stretch was going to be a doozy. I prayed and prayed that God would give him comfort while he was fasting. Well, that he did. The boy slept soundly on my chest right up to the point I had to lay him on the CT bed so he could get prepped for anesthesia. It is definitely hard to leave your baby with a bunch of docs, but I knew he was in good hands. While we waited for him to get done, Mike went down the hall to the oncology office to see if the doctor could rush the results so we could organize the surgeon in case of a biopsy. I stayed in the imaging dept so I could nurse Joshua the minute they called us. It took him an hour to wake up, which was normal. He nursed right away and they let us take him home. The preliminary results showed the spots were hemangiomas. In english, the strawberry type of birthmarks kids get??? Yeah, those, only on his liver. Of course, I go home and google it. Not a good idea.

Tuesday, I called the oncology office and talked with the doctor. This was the report: they are 99% sure they are hemangiomas. The other option would be vascular malformations. An MRI will be needed to show the flow of the blood and confirm which it is. If they are hemangiomas, he will be followed every 2-3 months with an ultrasound and blood work. At this time they are not life threatening, but sometimes they can cause the make-up of the blood to be bad (something with platelets) and can impair the liver function. It is not doing either of those things in Joshua's case. Usually they "receed" with age. If they are vascular malformations, they will be there forever, but will not affect liver function. In a nutshell: MRI in 3 weeks (more anesthesia =(), ultrasound and blood work every 2-3 months to follow. NO OTHER "lesions" found anywhere else in the body. Oh, and they ordered an echo of his heart as sometimes these can cause cardiac failure, so they were looking for "shunting" (no idea what that is).

Wednesday was the big surgery day. Another starvation day for the poor baby. This time he could have breastmilk until 2 am and sugar water until 3:30 am. He woke at 3:45 I gave him the sugar water, which he drank surprisingly, but it didn't satisfy him so he just wanted to hang. His dad rocked him and we just hung with him until he drifted back to sleep. We had to be at the hospital at 6 am. Again, the little man just slept quietly until it was time for me to hand him over. He has such amazing angels =) We waited in the waiting room while he had his procedure done and the echo of his heart. As we were sitting there, I looked out the window and saw.... MY DAD!... walk by. He was on his way to my brothers and stopped to check on us. It was perfect timing b/c they called us back just then. Joshua was just sitting there wide awake hanging out! We were back at the house (my mother-in-law's) by 11. We had lunch and visited with my dad while J slept. He pretty much slept the whole day, waking to eat here and there. Today (Thursday) he was in the best mood he's been in his whole life during breakfast, just cooing and wiggling. Now we wonder if his hernia actually caused him pain. He was a little more irritable the rest of the day, but we drove back to Atascadero (me with the kids and dogs, Mike went back to Salinas to work), went to gymnastics and Back-to-School-Night, so the poor guy didn't really get a nap in.

He is doing great and we are thankful to be home! Thank you for your continued prayers and support. We are so blessed. We just love our little man and are so proud of how brave he is. We know we couldn't get through any of this without God and are amazed each day at his faithfulness. On a side note, I'm going to have to start coloring my hair to cover up the greys this kid is giving me!!!

I'll post as soon as I know the results of the echo... nothing yet.

Tuesday, August 24, 2010

Update on the J-man

First off thank you, thank you for the love and support you have all poured out to our family this last few days. It means so much. It is just the lift I need. The prayers for strength are working. I have my moments and sometimes I just have to laugh at the situation because it is just absurd that we are going through yet another huge health issue with our sweet baby. I mean really?? I have double checked with God several times to make sure He has the right shoulders. My cross is heavy, but I am picking it up daily and know that God will give me the strength to carry it.

I have spent endless time on the phone with doctors scheduling appts, with insurance getting our advocate in place (someone to be on "our side" if any kind of test or treatment is denied), just in case we need one, and rescheduling what was on our schedule for next week so we can be in Fresno the entire week for J, filling out the forms for Kailee to be on independent study next week, refilling it out b/c the school people don't know their own schedule (long story) and the dates had to get changed "on paper", talking talking talking. ugh. I think we have our schedule in place now though. (see below)

We really don't know much more then we did last week... however, we do know his bloodwork (Chemistry, Liver function, thyroid, CBC, everything under the sun) is perfect. So we have ruled out hypothyroidism and know that his blood isn't fighting something VISIBLY. There could be a fight going on that just isn't showing up. Also, his AFP (alfa-feta protein) came back and has decreased since last month. This test is a tumor marker for the cancer associated with the Beckwith Weidemann syndrome they suspected he had earlier. Normal is around 40. When we left the NICU it was around 29,000 (normal for a newborn, it decreases over their first year of life). Last month it was 712 and this month it was 330. So that is fantastic also.

We have a CT scan of his lungs, abdomen, and pelvis with contrast scheduled for Monday afternoon. He will be sedated for this, which means no eating after 11:30 am and the scan isn't until 3:30, SO THAT SHOULD BE INTERSTING! He is not going to be happy about having food withheld. If they see something they are concerned about, they will do a biopsy Wednesday during his hernia surgery. 2 birds with one stone...

After talking with the oncologist, I learned that normally tumors do not present as several spots. They would be 1 solid tumor. IF this situation was cancer, it would be a "metastatic" cancer, meaning it is a cancer that originated elsewhere from a "primary" tumor. Hence, the scan being done on his whole torso region. The oncologist thinks this scenario is "highly unlikely". There are several other scenarios this could play out as, infection still is one, congenital liver disease (basically, he just has spots and we monitor them closely to see if they change). We didn't go through the list of "what ifs" just b/c we really know n othing until we see what kind of tissue it is in the CT scan.

I know that is more then most of you want to know, but for my own sake, I needed to purge the info from my brain.

Thanks for the prayers and support! God is good and I know He has a plan for our family.

Please pray specifically for the following:
All around safety/healing/peace/calmness for J in all of these procedures
Safe travels
Health for all of us!!! (So surgery doesn't get cancelled)
Strength for Mike and I
Balance - that we can give enough to the big girls so they don't feel left out

Saturday, August 21, 2010

Joshua.... Please Pray


Hey folks... most of you know that Joshua had appts @ Children's last Tuesday. We met with Urology for the hypospadias (Surgery Dec. 30), oncology (they "cleared" us pending one last abdominal ultrasound) and genetics.

Genetics assured us he was sure Josh doesn't have Beckwith Weidemann, but could have a genetic disease in a family of diseases the has developmental issues. We could do further testing, which we opted out of, to find the exact diagnosis, but they could test for one thing, it would be negative, test for another and so on. Since he is being followed develomentally anyway (and is on track I might add) we opted to let him just be a baby. We will revisit the idea in 6 mos.

Oncology wanted one more ultrasound because even though he tested negative for Beckwith, some kids have it, but don't have the genetic marker. Thursday we did the ultrasound... and got icky results. 14 spots on the liver. Dr. says it could be thyroid, infection or cancer. Ordered tons of blood work to be done Friday. Blood work came back and thyroid funcition is fine, blood chemistry is fine, and the liver function is fine. There is one more test that won't be back until next week that will be a tumor marker test. The dr. said it is not thyroid related, but could still be infection or cancer. I asked why his chemistry would be fine if he had either of those and she said it could happen.

So... we will be going to Children's, Joshua will have a CT scan so they can see if the spots are infection or cancerous tissue. If it is infection he will be admitted for IV antibiotics. If it is cancer, he will be admitted for a biopsy.

None of it adds up to one or the other... the blood is fine, the liver function is fine, normally w/cancer they only see 4-5 spots, but with infection (more spots) they see elevated white blood cell counts. We are in a wait and see position.

Please pray for healing, of course, and most importantly (well, it's all really important) strength for Mike and I. We (Me) are tired. Tired of the continuous bad news. I truly believe God is in control. He has worked SOOOO many miracles in Joshua already. He is so much bigger then we can imagine. The enemy is working hard because he knows I am beaten and tired. I am just having a hard time... like snuggling him before he goes to sleep and sitting there memorizing every noise, every detail of his face because I am scared he is going to be gone before I really get to know him. Or folding up hand me downs that are for 18 mos wondering if he will even be here to wear them... It plain sucks, I'll be honest.

I am finding new verses to keep me going...

Deuteronomy 1:30-31

"30 The LORD your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, 31 and in the desert. There you saw how the LORD your God carried you, as a father carries his son, all the way you went until you reached this place."

Psalm 112:7
7 He will have no fear of bad news; his heart is steadfast, trusting in the LORD.

Psalm 46:1
1 God is our refuge and strength, an ever-present help in trouble.

My God is my refuge. I will trust in Him. He has carried us this far I know He will continue.

And, finally, I haven't said it recently, but I sure do appreciate all the continued amazing support from all of you. Prayers, meals, childcare, etc. We are sooo sooo blessed. Thank you from the bottom of my heart.

Monday, August 16, 2010

Let the PEACE of GOD RULE your HEARTS.

That was the title of yesterday's message at church. I love this. It can mean so much... peace in the time of trials and tragedy... or just plain old peace and contentment with your current status in life. I think the message will help several families that I know are going through some real challenges right now. I love our pastor and his presentation of scripture. It's just that, scripture. No storytelling with a little Bible thrown in for good measure. I felt I needed to share yesterday's message with all of you. It's something I struggle with all the time... letting go and letting God. So, this is also more of a brain purge for me so I have all these great verses in one spot that I can go reference for myself. Of course, my notes are all over the place and won't flow nearly as cohesively as Steve presented them, but I will do my best to relay the PEACE.

It was based on Colossians 3:15-17
15 And let the peace of God rule in your hearts, to which also you were called in one body; and be thankful. 16 Let the word of Christ dwell in you richly in all wisdom, teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord. 17 And whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks to God the Father through Him.

Basically, let the peace of God rule your hearts... not self-pity, depression, anger, selfishness, etc. When talking about your hearts, it also is referencing your thoughts, feelings, your mind.

John 10:10
"The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly."

The thief is Satan, worry, anxiety, fear, selfishness, the pursuit of power over the pursuit of God. Any and all of those things will interfere with the peace God wants us to have - with our ability to trust in HIM and NOT in ourselves and man. A life of contentment will not be found if we let the "thieves" in.

Ecclesiastes 2:10-12
10 Whatever my eyes desired I did not keep from them.
I did not withhold my heart from any pleasure,
For my heart rejoiced in all my labor;
And this was my reward from all my labor.
11 Then I looked on all the works that my hands had done
And on the labor in which I had toiled;
And indeed all was vanity and grasping for the wind.
There was no profit under the sun.

Solomon wrote this - my non-Bible scholar description of Solomon is that he was comprable to a modern day "player"/"baller". He had lots of wives, concumbines, anything he desired he got. He still was not satisfied. "...all was in vanity and grasping for the wind." No matter what amount of materialistic/worldly STUFF he acquired/experienced, he was not content. Peace with God brings contentment.

Solomon also wrote in Ecclesiastes 1:9 "That which has been is what will be, That which is done is what will be done, And there is nothing new under the sun." The latest and greatest will not satisfy, no matter how you think it might.

Luke 9:23 "Then he said to them all, "If anyone desires to come after Me, let him DENY HIMSELF, and take up his cross and FOLLLOW ME."

The moment we drop US and pick up our cross and follow God is the moment we can find true peace and contentment. Each time I have tried to do things myself without God I have failed miserably... and will continue to fail everytime I go it alone.

John 14:27 "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid."

I love this because it reaches to so many areas of life... not having a job, having a sick child,a loss in the family, anything at all. When the world says, "Here's some anti-deppresants," God says, "Stick with me, I've got it. Here's some peace, now relax and let me do my job. Do not be afraid."

Isaiah 26:4 "Trust in the Lord forever, For in YAH, the Lord, is everlasting strength."

All that is not to say it is going to be easy... we need strength to relax in God's arms and get the peace He wants to give us, so He says Trust in the Lord and you will have everlasting strength. PRAY for it people!

Phil 4:6-7
6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

DO NOT BE ANXIOUS! Are you sensing a theme here? Pray for peace, Trust God, and you will be blown away by how amazing you feel. People around you will be baffled by your newfound peace... for us it was, "Wow, they told you your son wasn't going to be born, and if he was he'd have a million issues. How are you happy? How are you not crying all the time." Simple. Well, not simple, we prayed A LOT. But had FAITH that God was in control. Everytime we started to get super anxious, we knew we were trying to do it on our own and we needed to let go and let God. And when we did, it would bring us back down from our crazy anxious place.

I Timothy 6:6-7
"Now godliness with contentment is great gain. For we brought NOTHING INTO this world, and it is certain we can carry NOTHING OUT."

We need to be content. He who dies with the most toys still dies... without the toys.

2 Cor 10:5 "...bringing every thought into captivity to the obedience of Christ."

Are your thoughts of God? Aligned with the above verses, trusting and relying on Him? Or are the full of worry and anxiousness???

John 16:33
33 These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.”

Trials are not to destroy us but to REFINE us. Life is a vapor, our time here is short, surely we can overcome our trials here... Jesus overcame the whole stinkin' world... I think we can handle this. With lots of prayer and lots of faith of course!

1 Cor 10:13
"No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it."

When we are tempted to go to the dark place, God will give us a way out... a way to get through it. Of course, you have to be willing as well. Willing to give up yourself and allow God to work. That's the hard part for me. Sometimes I just forget and try to do it alone. That's when it gets hard, I fail and then try again with God backing me up.

Steve said life is full of forks in the road. One goes to the "My Way" side. We think it is easier and quicker, but it doesn't give us the peace of God. The other fork goes the "God Way". Sometimes it's harder, but the payoff is great... PEACE.

One more on the worry/God provides/be content topic:

Matt 6:25-27
“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? 26 Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? 27 Which of you by worrying can add one cubit to his stature?"

All the worry in the world isn't going to bring you more money. More stuff. More anything. Espcially not peace. Like Steve said, you don't see the birds plowing their fields, or loading there storerooms with grain. God just provides for them, as He will for us.


Finally, BE THANKFUL! God is such an amazing and loving father. Good, bad, and ugly, he loves us dearly. He is sitting there waiting for us to ask for help. From start to finish. Steve said, "Don't just pray ABOUT IT, pray THROUGH it!" And thank God at every step for holding you up and getting you through.

Heavenly Father I am so thankful for your unfailing love. For your promise of peace. Nothing is too great to get through knowing I can fall into your arms and let you be in control. It is so much easier knowing you are the "driver of this bus" not me. Thank you for all you have blessed my family with. I pray we can use those blessings to glorify you and further your kingdom. Amen.

Monday, August 2, 2010

Caramel Apple Salad


This recipe is from my cousin in Mississippi... it is delicious!!!

CARAMEL APPLE SALAD


20 oz crushed pineapple, drained

2 1/2 c. mini-marshmellows

4-6 green apples (you can mix a crisp red if you want) unpeeled, diced

8 oz. Cool Whip

1 pkg caramels cut into 4ths

Cook the ingredients below until they are thick. Cool, then fold in Cool Whip.

1 c. sugar

2 eggs

2 T. flour

Mix all together and ENJOY!!