Some may not know but we were away for a few days but now we're finally home. It's been a tough week with 3 hospital visits, one at Stanford for 2 days. All is good now. Our friends at Dominican and Stanford pulled together and figured out a plan of attack! I love those guys!
Quick Synopsis: Docs determined Natalie did (does as of this moment) have a bacterial blood infection. This is again what they avoid at all costs. Here's the good news on a couple fronts: ... Dominican found it on accident after they stopped observing her blood samples (6 days past our first blood test). Apparently, someone lab worker was just walking by and glanced over at Natalie's blood sample and noticed something odd. Upon looking closer, they spotted a type of strep bacteria. Finding it is half the battle but seeing how one can kill it is another issue. So docs determined it was not a very robust bacteria and sent us home with some by-mouth antibiotics. They said it should be out of her blood stream in no more than 12 days!
Though we missed our Sea World trip I am glad things worked out the way they did. We could not of imagined flying to San Diego only to be admitted the entire week. We'll have do do some serious schedule changes to get back on track but we are up for the challenge! Thanks for your prayers, I had some good "God-talks" with friends and staff while we were away. Everyone is so great up there, in some ways it's like another home!
The Orlando's
You will appreciate this. Natalie’s teacher was teaching the concept of "INSIDE." Last session Anne (our amazing home school teacher) has Natalie put bug stickers "inside" the boarder of a picture of a leaf. With stickers ranging from 1-6 then she had Natalie point to a sticker with a number on it and reached "inside" a container full of tongue depressors. Natalie counts them out then put them back "inside" the container. I have really enjoyed seeing Natalie's mind reaching for these concepts. She's really getting all the creative ideas Anne brings each week.
She is already recognizing all her letters now. Anne thinks she's going to be a good reader, which is so important, especially nowa days! Natalie loves learning and we love watching her. We have no hesitation that she going to be ready for school (away from home) when that phase of our plan rolls around. Since Natalie's birthday is January, she'll not start kindergarten this September, but out plan is to begin attending away from home school in the Fall. Then transition to using the school bus! (pray for that!). .
The big news is Natalie has officially begun walking (more than scooting). It's been a few weeks now and all the success can be attributed to our amazing Physical Therapist Diane Attsat. When insurance failed to pay, she stepped up and is offering her services virtually for free. Dominick and Dana are trading her for odd jobs to cover the PT service service but, the quality of work she's accomplished, (we all agree) Natalie is getting the best end of the bargain.
Dom (Sr.) had an old tricycle put away, that use to be Dominick's when he was a little boy. He refurbished it and we're planning on introduce Natalie at her next Physical Therapy session. Last therepy session we went to the park to help her to climb. Natalie is going to be a great climber becase she has such great upper body strength (when she wants to use it). We just have to show her the advantages of being mobile, and she's getting it!!!! Tha's all for now!
In addition to the prayer team I asked some of my friends on face book to pray and they did. This morning we got up at 5ish am and headed over to Stanford Children's Hospital. All was going according to plan right up until the moment we were ready to go into surgery. All the papers were signed, tubes and monitors were hooked up and all the different surgical departments had consulted with me regarding what was going to happen over the next two hours.
So, right before we headed out the door, the primary surgeon popped in and met with me for a minute. She asked if we tried fixing the line with a special procedure I had never heard of - of course I said NO. This "Plan B" was less risky since it was a procedure not a surgery. It would attempt to fix the placement of the tube (that delivers chemo directly into Natalie's heart). She then said if this new "Plan B" doesn't work, we can get surgery later today. I said, "OK, good plan!"
The surgical team called over to the Stanford (Adult) side of the hospital (since this is where the procedure would be taking place). Wouldn't you know there was an immediate opening (Never happens). I gowned up with a smock, mask and surgical hat and helped calm Natalie down as Anastesia put her under once we got there. I said goodbye and waited outside. 10 minutes later they came out. This was odd considering the team just told me it would be an hour long procedure. The first words out of their mouth was "All's fixed!" They said, "we didn't have to do anything. The tube apparently flipped back into place all by itself as they were surprised when it showed up on the x-ray monitor." AND it's in perfect placement.
Later that day as we met with our Oncologist (who ordered the surgery), said she didn't know how it flipped out of place. The angles were pretty sharp and seemed really unlikely to have come out of place and back into alignment again. Though the Surgeons claimed the issue could have been caused by a simple coughing spell, I choose to think IT WAS SOMETHING ELSE. Thanks for praying everyone :)
The Orlando's :)
We're continually being reminded in new and fun ways that our kids are growing up. The other day we took a long drive. As usual, the hum of the tires put the girls to sleep.
When Natalie woke up we heard her say the word, "Boat." "Were you dreaming you were on a boat?" we asked. She immediately said, "yes," as she rubbed her eyes. Dana asked, "Were you on the ocean?"Again she said in a sweet voice "yes!" "Were there fish?" "No!" she replied emphatically. We asked "Were there birds?" She smiled, "Yes." Then she pointed up as if to describe more of her dream, "Moooon!" Dana continued "Oh, you were on a boat at night? "Yes" she said. I then added, "Was mom there?" of course... she said "Yes!" Then she babbled a long string of words. Who knows what she was saying, but I like to imagine that she was saying that we were all there, enjoying the moon on the water, content since we were all together. What a fun insight it was into the dreams of our little 4 year old.
We often wish our kids can stay sweet and innocent like this forever. It's in these times we get rare views into who God has created(ing) them to be. More the reason to fight against the currents of our busy schedules, to be present as much as possible, because this time only comes once.
Last night we found a ripe opportunity to share with the joys of sharing with Nicole. This opportunity came about as the following drama unfolded: THE FOLLOWING IS A TRUE ACCOUNT. NO NAMES HAVE BEEN CHANGED TO PROTECT THE INNOCENT.
The Girl's love pretzels and they often can be seen walking around the house carrying little bowls of this wonderful "God given" snacks in them. Since Nicole had control of the entire bag Dana and I thought it could be disastrous for a kid to have that much goodness, so we tried to help her put a few in her's and her sisters bowl.
"OK Nicole put some pretzels in your bowl." Which she did. Then immediately after we prompted her to place a few in her sisters bowl. She reached into the bag and grabbed a hand full only keep filling her own bowl with more. This happened a few times as she contemplated relinquishing control of the bag. We said, "Nicole, put a few pretzels in your sisters bowl, so you can "share."After a few more hand fulls it seems she couldn't bring herself release her little handful of pretzels. It was the the hand just hovered there wanting to let go but the brain couldn't. The hand often diverted willingly to the mouth.
Finally she reached into the bag and pulled out a lonely, tattered and broken pretzel. This was it we said, "Come on Nicole you can do it!' 'PUT THE PRETZEL IN YOUR SISTERS BOWL..." She did it (of course she took a bite out of it first but something is better than nothing).
"Good," we said outloud, "Now take it to your sister." Each step toon an eternity as she made her way across the room. You could almost see her mind workig as she pondered the lone, injured, half eaten pretzel in the bowl. When she arrived I can faithfully report she stretched out her arm and handed her sister the bowl and did share. THE BAD NEWS WAS AS NATALIE TOOK THE BOWL, NICOLE TOOK THE PRETZEL AND ATE IT.
You don't win 'em all!