We have a 7 year old!!

Kailee celebrated her 7TH birthday while we were in Fresno. We don't do birthday parties every year and the last one she had was for her 5th b-day, so I figured, if she wanted, this could be a party year. Especially since so much of our life has revolved around Joshua. When I asked her what she would like to do, she said she just wanted a family party. It worked our perfectly that we were in Fresno because there are all kinds of aunts, uncles and cousins around! She got to have 2 CAKES!! The first celebration was a couple days early because Mike had to work on her actual day. Yummy Cold Stone ice cream cake!!

J was in attendance... not sure how these pics ended up in this blog... oh well.

His best nap the entire trip was laying on the couch by the pool.

Nana got her some sassy cupcakes for her actual day. She was so happy because I NEVER buy those for them.

I am so proud of my sweet 7 year old girl. Kailee Boo... you sure are amazing. You have such a sweet spirit. I cannot wait to see what this year brings you!! I love you forever!

Fresno... Round 1

So the first time Joshua was supposed to have hernia surgery he came down with whooping cough. Sad huh? As if the kid hasn't been through enough. I took him to the dr. right away and they started him on antibiotics, so really he never got bad. Not more then a regular cold, but still, it was sad. Needless to say, he couldn't have his surgery because he was sick. It was rescheduled for 9/1. We decided to go to Fresno anyway (we actually didn't know he had whooping cough at that time, just thought he had a cold) to hang with family.

Our first stop was Mike's grandparents house. They hadn't met Mr. J yet.

Ever had pineapple and coconut ice cream??? Grandma had some and it was AMAZING!

Grandpa and his 3 GREAT grand kiddos.

The next next stop was Mike's mom's house. This is our camp spot when we are in Fresno. We are so blessed that her house is just about 10 min away from the Children's Hospital. This round was just play time... the dogs even got in on it with some swimming.

Just floating around...

Bryant isn't so much a water dog... kept hanging onto the edge.

Not sure where the arm pose comes from... too much Toddlers and Tiaras???

Silly faces

Pumpkin Cake

Delicious and just in time for fall! I can take no credit for this recipe, I got it from friends years ago. It is one of my faves!! I forgot to take a pic of it, so you just get the recipe =)

Custard:
1 large can of pumpkin
5 eggs, beaten
1 t. salt
1 t. ginger
sprinkle of nutmeg
1 lrg can evaporated milk (12 oz)
1 1/2 cups sugar
2 t. cinammon

Mix all ingredients and pour into a 9x13 casserole pan

Topping:
1 box yellow cake mix
1 cube of butter, softened

Mix butter and cake together until clumpy, then spread over custard. Don't mix in.

Bake at 350 for 1 hour.

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!

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".

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.

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