Follow by Email

PROVERBS 3:5-6

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.

Wednesday, December 29, 2010

Time of year...

Is it possible to love and hate the same time of year? I do! I love the holidays, of course who really doesn't love them? I hate the anniversary that is right around the corner. I think it came flooding back to me as I laid down to get Nathan to go to sleep. You see his room was once Marshall's room. It has changed a bit but not a lot. We had carpet in there back then and now we have hard wood floors, there is a different bed in there now. The paint is newer but still the same basic color and the wallpaper border is still the same for almost 12 years now(dinosaurs), which will change soon. Anyway as I was laying there in the bed with Nate all kinds of memories from 8 years ago came flooding back. Well it's not quite there yet on Jan 11th to be exact will be 8 years. I was remembering how the night started. Marshall was sick with a cold and yucky coughing and all. The night progressed and he started to throw up some blood, not a lot and he has extremely low platelets and I was not that worried...but as the night went on I just remember him saying weird things and then BOOM, it hit me like it hit him...I called the pediatrician and told her, this was like at midnight and she said what I think deep down I already knew...get him to Tulane Hospital ASAP. She asked if we wanted her to call an ambulance, but Ty figured he would get him there a lot faster than them, as first they would have to find us in the woods. When we got to the causeway we payed the toll and told the toll booth lady we were on our way to the ER she notified any police that were working on the bridge that night so if they saw us they would know what was going on...it's at a time like this that having police officer training is very helpful. When we reached the south shore we just went ran red lights and all we thought for sure that some police man somewhere was going to follow us to the ER, but no we were lucky. When we arrived at the Er they were ready and waiting for us. Thankfully one of our favorite police friends was working (we had met him just a few weeks earlier) and was so helpful. The doctors already suspected what was wrong but didn't tell us till it was confirmed and they worked quickly and it is that quickness and thoroughness that they took that I am thankful for today that my son is still alive!! I don't think I will ever for get that night. Ty was so worried not only about Marshall but me as well as I was pregnant with Nathan and was an extreme high risk pregnancy. We were told that who ever needed to get there need to get there now! We called my mom and dad and they came with Mimi quickly. You see it was also their anniversary!
Any way lets just say the next 48 hours or so were so critical, he had had brain surgery to repair a massive brain hemorrhage, lets just say the doctors were NOT optimistic at all. The gave us no prognosis what so ever and all they could tell us is we did what we could do and now time will tell. Time did tell and God preformed a miracle, because in just a few days he was out of the PICU and in a regular room walking talking and learning to eat again. To this day doctors are still amazed at him they told us with the kind of damage to the brain, that he should have been a vegetable basically. The left side of the brain was so swollen that you could hardly see the right side on the CT scan (they showed it to us). The center line of the brain is not suppose to move.
Anyway that is the main reason that I hate this time of year it always bring back those memories, and yes I am thankful that God granted that miracle and he is still here. As a mom though, and all you moms and probably dads too know....I HATE that he even had to go through anything like that!!! So when we call him Mighty Miraculous Marshall...you kinda know why!
Sorry to ramble but I just had to let it out....I'm so thankful it has been 8 years!!
On the home/health front they all seem to be getting over their nasty colds and we will be get Amelia's counts done on the 3rd of Jan.
Keep praying for them and thank you for your prayers they mean the world to us and if anyone knows the power of prayer it is I!!
Blessings,

Tuesday, December 21, 2010

Christmas Card 2010

Well I couldn't get them all in one picture together...they are siblings need I say more! So here is our Christmas card for this year.



I hope you all have a wonderfully blessed Merry Christmas and a Happy Healthy New Year!

On the health front, could you say a little prayer for us all as it is official, everyone in the house has the crud! Amelia was due to get counts but because she isn't feeling well I'm going to hold of for a week or two. Pray that this little cold doesn't affect her counts too bad!
Thanks again...
Blessings,

Saturday, December 11, 2010

boring update...

Gosh I can't believe it has been almost a month since I last updated....
We have been busy around here. The kids are all in to something. Marshall was in a play at school "Babes in Toyland" He loved it! He has had a Christmas concert with chorus...Amelia has choir too at her school and she will be doing her Christmas stuff on the 15th. Nate he is into the Cub Scouts and enjoying it very much and we have been running to meetings and other things dealing with them.
I have met myself many times with all the comings and goings......their social calenders are just too much for me to keep up with.

On the health front (knock on some wood) they are all doing rather well. Amelia's counts are of course not the best but they are holding. I notice her a little tired and grouchy and I know that, that is her blood counts showing their signs. She doesn't realize it and of course wouldn't admit to anything any way, she has not and will not slow down ANY!!
Ty on the other hand I had to take to the doctor. He had to startings of bronchitis. He got a shot and some antibiotics. The hard part is that he is working nights, which he is not use to and that takes a lot of him. I'm hoping it gets under control before he infects any of the rest of us.
Well that's about it around here...I'm happy to say we, for now, are happy being a normal boring family!!

Wednesday, November 17, 2010

Counts...

We got Amelia's counts back...They are stable and will get us a ticket for another month.
Counts are
Wbc 3.4 (White Blood Cells)
Hgb 8.2 (hemoglobin)
Plt 24 (platelets)

ANC 850 (Absolute Nutraphil Count, Immune system) they like to have this abouve 1000 and Not below 500.

I have asked her doctor about a drug that might keep her counts up. The problem is they are not sure what they can do to the out come of a bone marrow transplant. Marshall was on a harsh one for years, but we had no choice with him as we could not find a match for him. Below is what the Dr sent me back about my question when I asked him how low would we let her counts get and can we try Danazole an androgen known to help with the Hgb.


"This is a good question. I dont know the answer on the danazol; it might be ok these days but Im hesitant to give. The good news is that you still have time as Amelia's counts have stayed up there longer than I expected. Ill keep my fingers crossed that she can wait. Id first use the G CSF (Neupogen) if I had do for her ANC if <500 but you are right that only the danazol has a chance for helping the platelets (although there is a new drug these days we might try). If she needs it, Ill see if I can get it for her. Nonetheless, Im hoping that the new policy starts July 2011 and I bet she can make that date. John"



So this is where we are today still needing you to pray for her, she has the sniffles right now and a cough...
I am thankful that her counts have remained stable, I just really pray that they can stay that way till all of this insurance stuff can be deciphered!
I'm hoping to get up some recipes later today....They were YUMMY!
Blessings,



Monday, November 8, 2010

Greetings....

Greetings faithful followers and fans...
Yes it had been quite a while since I last updated this site. We have been very busy with life and well to me that is just a great thing around here.

I just brought Amelia to get her counts this morning, so now I sit on pins and needles to find out her counts. I am praying really hard that they are OK, we had a finger stick done last Tuesday and well her hemoglobin was not the best at 7.4, I really pray that it is a wee bit better than that today. I am praying hard that we can make it to at least June with her counts, because I really really want to go with Dr Wagner for a transplant.

So a little of what has been happening. I am busy running around trying to keep up with my kids and their social calender. Marshall is in the church choir and the school choir so he has been busy with those. The choir will also be preforming "Babes in Toyland" in the beginning of December, so he is having to stay after school every day for practice.
Amelia is also in her school's choir and she will be preforming both Thursday and Friday. Thursday is at school and Friday we will head to New Orleans to the D Day Museum for her performance there.
Nate is in cub scouts, and that keeps us pretty busy too. Tonight is a pack meeting and he has to say his pledge in order to earn so kind of badge or something, I don't know I can't keep up with all of this stuff on top of regular school work and projects and all!!

To be honest I have been having a hard time dealing with that fact that Amelia's counts are dropping. Truthfully I am not sure why?? I mean I know that it is coming and I've known this for 10 years now. It is just NEVER easy to realize that your child has to go through something so horrible. Especially when she is doing great and looking great and feeling really well. Just her bone marrow is really sucking! That to me just doesn't seem fair not one single bit!! She is such a tough cookie and so happy. I hate FA!! It's just not fair that I may not get to see my kiddo's grow up, learn to do the little things in life, maybe never get married. I try, I really REALLY try to usually see the positive things in life and look for the bright side. There are more good days than bad days, but here lately it has been hitting me really hard. Sometime I will find my self crying about it for no real reason. I just get to thinking about it and boom it just hits me.
Well I don't want to start now so I think I will move on.

Our kitchen is finished!! It took 4 weeks to complete it, and that was thanks to my wonderful dad who did 95% of the work himself. The counter tops were the only things he didn't do....Here are a few pictures...
Before...


and now here it is today...I LOVE IT!! So much more room to move in it.


Yes it is much cleaner now, those were taken the weekend of Halloween and it was a busy in and out of the house weekend....
But I'm going to go dirty it up now making these cute little things for my littlest boy....

Then off to make quick beef stroganoff, who knows maybe I'll even post them tomorrow for Tasty Tuesday....Anyway have a great day!!!

Wednesday, October 27, 2010

MIA

I promise we haven't fallen off the face of the Earth! We have been busy..but things are starting to slow down some, and as soon as they do I will do a proper update but for not could you please keep all the kids in your prayers as they all have the yucky gunk!
For now here is a picture of the ALMOST done kitchen it's about 99.9% done...woo hooo....


Wednesday, September 29, 2010

when it rains it pours...

Well it has been a heck of a week so far! Monday we started off pretty good Amelia had her monthly blood draw. They were good enough for us to make it another month, which right now is absolutely FINE with me!! Her white cell's were 3.3, Hemoglobin 8.6 and platelets were 24. Honestly I don't know how she has the energy she does with a low hmg, I suppose it is true that the body adjust to things....
Yesterday, I was taking wall paper boarder down when the high school called me. Marshal had an accident at school and needed to be picked up because he might need stitches...well he did need stitches about 8-10 of them...






He and another boy were in line at school for lunch and they were playing around and the kid pushed him, not hard just kidding around and Marshall fell off balance, as he is not the most gracefullest of people to begin with and he stumbled and fell into the Milk container and hit the "thingy" on the wheel that looks them. (don't you love my terminology) SO that's how that ended...but as I was on my way to the doctor with Marshall, my mom and dad who were still at my house got a call from the Jr. High school, Amelia got hit in the face and was complaining that it hurt and needed to be picked up and assessed....So thankfully my parents were able to get there and get her and thankfully she was OK.
So today I am hoping for a quiet day....hahahaha yeah right who am I kidding...quite around here would only be when they are sleeping!!!
Any way Marshall is home from school probably till next week 1) it hurts really bad to put weight on it and 2) I need to make sure it doesn't get infected and hey this is a teenage boy we are talking about here so you know how that goes.
Nathan is going to the doctor on Friday to discuss the possibility that he has ADD. I have made a few changes in his diet, so I am hoping that will help him some. The main and only issue that he is having is focusing, he is bored with his work and needs to be constantly reminded to stay on task. But I have done a lot of research on this and think it's worth discussing. Thankfully it hasn't affected his grades any. the research say that kids with ADD tend to be very creative and imaginative and oh boy is that him!
Any way please continue to keep them all in your prayers they are truly appreciated.

Saturday, September 18, 2010

7 year itch!

7 years ago today we go the most precious gift from a stranger in North Carolina...the gift of life! Today Marshall celebrated his 7 year post bone marrow transplant! Happy re-birth day I am so proud of you...ironically he's not home he is out with friends and I am happy because this is the child that I was told that probably wouldn't live to see his teen years!! Also it is my wonderful mom's birthday!! They share such a special day. I love you both and so proud to have you in my life!!!

--Kelly
==================================================================
This mobile text message is brought to you by AT&T

Monday, September 13, 2010

What's happening....

I didn't fall of the face of the Earth I promise....We have taken on destruction and reconstructing our kitchen and dinning room. Here are some before pics....notice I didn't clean as I knew what would be happening soon...







Here are a few of during....my life is in total chaos right now...but it will all be worth it in a month or so...and since it's my dad doing all the work it's more like or so...maybe we'll be able to enjoy Thanksgiving in our new kitchen!!


So bare with me, I'll update more as I can and of course I'll swamp you with after pictures!

Friday, September 3, 2010

Busy day today....this is one of those days when you wish you could split yourself into at least two or more selves!!

Anyway, I would like to ask for a prayer request for my father in law. He is having open heart surgery this morning to replace a valve and 2 bi passes. So if you could remember him today we would all be grateful.

Every one else here is moving right along, I think some of them are getting the sniffles and colds...so far it's mainly been when they wake up and seems to go away during the day, so maybe it's just sinus drips. Anyway, I'm off for an extreme full day...I'll keep you posted as I can.
Blessings,

Monday, August 23, 2010

Well I guess I haven't done a great job of keeping every one updated. But truthfully there hasn't been much going on. Amelia did great with her bone marrow biopsy. The results were ok there was nothing that stood out.

School started about two weeks ago and all the kids have settled into their daily routines. Nate hates to do his homework, it is a little excessive for a 7 year old but he does fairly well with it. Nate is just lazy and has a lot of play in his head. He is extremely smart and has tons of common sense, but Nate wants to do what he wants to do. Thankfully at school he does what he is told to do and he sits and does his work, but when it comes to homework he is so slow.......

Marshall is doing ROTC and Choir at school and also does choir at church. He has been a busy little bee. So far he is doing pretty good in school. Amelia is also doing choir at her school, so I bring her to school on Monday and Wednesday's for 7:45

We went this morning to get her blood counts done for this month. Her current counts are not the greatest.....
White Cells 3.2
Hemoglobin 8.4 (which is really low, that is why she is so tired all the time)
platelets 21

I'm waiting to hear from Dr W. Her retic count was pretty good, so I am kind of suspecting that something may be going on in there, maybe a virus or something....the retic count shows that her bone marrow is producing, but her counts show that her body is using them up.

In the mean time I am trying to gather my thoughts and put them into a letter. We have to make an appointment with our local sheriff ( my hubby's boss) to see if he can go to the Sheriff's association who our insurance is through to appeal to them to waive her transplant cap, which is $300,000.00. We want them to waive that and let her use her life time maximum. Our biggest problem is that the sheriff's association has a self funded policy. I am getting a whole new education in insurance now. I really don't want all this education into these things like blood work, transplants, insurance and such....on these subjects I wish I had NO need to ever be educated on!!!!

Well it's almost time for the kiddos to come home from school so off I go.

Sunday, August 22, 2010

my new purse....still deciding if I want to keep it.....

Sunday, August 8, 2010

Last day of Summer

Today is the last day of summer vacation for the kids. Tomorrow is the first day of school...yep kinda shocking that it is on a Monday. I will have an 11th, 5th and 2nd grader. Two out of the three are ready to head back....the lone one just wants to be out side shirtless, shoeless and with some sort of critter to catch. This week will be a hard one for all of my "night owls". Marshall needs to get up at 5:15 and Nate has to get up at 5:45 and Ms Amelia get to sleep in and not get up till 6:45.

So we are off today to enjoy all that the day has to offer, mostly swimming cause it's too dang hot to be out side doing anything else. The heat index is about to kill us here, I hate to see my electric bill this month!!
I will let you know what we get into......

Friday, July 30, 2010

update....

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....

Blessings,