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Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths STRAIGHT.

Friday, July 30, 2010


OK so I know it's been a while and I figure I'm in need of a serious update. But honestly there isn't much to tell. I'm still waiting to hear from the doctors about Amelia's bone marrow biopsy results....I just called and they didn't answer so maybe by the time I finish this they will be there and I can relay the results.
SO let me back up a bit, a few weeks ago, I learned a little something about the Obama care insurance that will be kicking in soon, all of it in our favor...just again our insurance sucks, but not in the way that you would be thinking. Here let me see if I can explain this well. As of 9/23/10 any insurance policy that renews after that date CAN NOT put a cap on their insurances, meaning bone marrow transplants among other things. So in other words, we will no longer have a $300,000.00 BMT cap, thus meaning that Minnesota can not refuse us. Here is the catch for us though, our insurance policy doesn't renew until 7/1/11 a year away...that is where the prayers are seriously needed to help keep Amelia as healthy as we can so we can make it to July. And any one in the FA world know that a year in FA can be a lifetime!!
I am putting it all in Gods hands, I know that He has the power to do this. He has shown us a glimmer of hope for a reason, I truly believe that!
Amelia had her biopsy last Thursday and again did great, was up and running and playing in no time and only took Tylenol at the hospital and that was it. She is so strong at such a young age. She is truly a trooper.
On other fronts of our lives there isn't really much else. The kids are gearing up for school to start which will be on Aug 9th. They have one full week of summer to enjoy. Marshall and Amelia are both ready for school to start, Nate, well he could take it or leave it! He's just all boy and wants to be out side playing in the dirt. With some kind of creature would be even better for him. We celebrated his birthday, we went to Chuck E Cheese. He had a ball. So all the kids birthday are done till next summer. Here are a few pictures of his birthday cake......

Ok just called the hospital and still nothing, well the report is in but the regular nurse is on vacation so, the nurse that answered wanted to have the doctor call me since he would know what he was talking about. So know I sit and wait for him to call back and pray that I can understand him, if not I will have to call them back on Monday and talk to the regular nurse, Michelle who will translate for me. ( in case I for got to mention the new Dr is from India, and well he is a great doctor and very through and knows his stuff, but I can't understand everything he says)

I also finally emailed Dr W in Minnesota back asking him what prompted him to send me that email...he just emailed me back saying he would try to call me tonight at 6...waiting on pins and needles!

Keep praying...please, and thank you....


Monday, July 19, 2010

Hem/onc Visit

Just wanted to give a quick update of today's doctor visit. The doctor was very through and knowledgeable about FA. I'm having a bit of trouble understanding him, he's from India and when he slows down I can understand him more. They were able to get her blood on the first stick. I got her counts back and they are:
WBC 4.59
HGB 9.5 and
Plt 18

not too thrilled about the platelets, but we have been here before and praying that again they rebound up!!!
Everything is a go for her annual biopsy on Thursday, this will tell us much more of what is going on in her marrow. Please continue to hold her up in prayer we need to make it to July 1st. Oops looks like I need to fill you in on that too.
Well I would tonight but I am beat so I will try and do it on Wed, can't tomorrow as I will be crying my eyes out while at the same time smiling with joy as my first born son, the one who on numerous occasions I was told would probably not make it to see 12....celebrates his GULP 17th birthday!!!!! Happy birthday to my 4 million dollar double miracle boy!! Happy Birthday Marshall.

Sunday, July 18, 2010


OK so it's been a while since I've done a proper update... So I guess I'll try to take a few minutes and do one.
We have been going crazy busy around here doing all the fun summer things, yeah like trying to stay cool in this crazy southern heat at 100+% humidity and 100* temps. But none the less we have been doing our best to enjoy as much as we can. School starts here in about 20 days.
It is again that time of year for Amelia to have her annual visit to the hematologist and her bone marrow biopsy. We will be heading our tomorrow morning for her visit with the doctor at Ochsner. We will be having blood work done on her tomorrow too so please keep her in your prayers as she will have new people taking her blood and I pray that she does not become a pin cushion to them. Also please pray for great/good counts and again can you remember her Thursday morning as she will be going to the OR for her biopsy. They usually do them in the PICU under propafol but since she is so hard to get an IV on they put her to sleep first then start the IV.

Tuesday will be Marshall's 17th birthday...I really can't believe that. Seventeen, where oh where did the years go? and then next week on the 28th my baby will be 7, yes 7 already.....and you wonder why I have lots of gray hairs...wonder no more!!
Well it's getting late and I have a busy day tomorrow. I will try to update if there is any info from the new doctor, but for now just pray they are able to stick only once and get AWESOME count results....

Thursday, July 15, 2010

Tuesday, July 6, 2010

Thursday, July 1, 2010