Update

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....
TTFN...

back....

OK Peeps sorry I have been MIA!! We've been busy with doctors and dentist.
So here is the 411... (OK Amelia just informed me I am too old to uses peeps and 411)

I bit the bullet and made contact with Cincinnati Children's Hospital. I emailed the doctor there and with in 10 minutes she had emailed me back. Nurse Coordinator called me the next day as it was late in the afternoon and now we have appoints scheduled for April 7 & 8. My mom, dad and I are gonna drive up with Amelia and Nate. That way I'll have some help because she will be having some test run on her and I am sure we will have a very busy and stressful two days. There is a lot to cram in to a two days. While we are there one of my BFF's wants us to check out local restaurants so that way when people back home ask what they can do for us she said she is gonna tell them a gift card to restaurants and groceries.

I am starting to be a little more at ease with this decision that was, well, made for me. My other Bestest Friend Susan asked me if I was OK with going to Cincinnati....well you know how people talk about those light bulb moments? I actually had one it just hit me I felt the click in my brain.! She asked if I was OK with the decision and I told her I had to be I had no choice, the only two places left were Cincinnati or New York and I asked the doc in Minnesota which one he would go to and as I was telling her this..it just clicked, it doesn't matter what hospital we go to, in the end God is in control!!! His will, will be done no matter what hospital we are at. What He wants for her will happen no matter where we are. I just have to keep praying He keeps her here with us and keep the FAITH, no matter what. Grant it I am scared to death...literally, but I am trying to prepare myself. I know that it could happen, thing is can anyone REALLY prepare themselves to loose a child, let alone any loved one? I discuss this with Susan and she continually tells me, "you are one strong woman" In all honesty I do have my moments of weakness and break down and cry, but it is usually when no one is looking. I can't and won't let Nathan or Amelia see me that way. Nate has NO IDEA of what is going on and well I am the one who Amelia relies on and I can't let her know that I am scared to death when I know that she is shaking in her boots and feels like she has no control over her life! She too though is a strong little girl, for all she has been through, she just keeps on trucking along. She has surgery and bounces back so quick and ready to go. She will need that for sure to get her through this transplant!

She was sick last week with a sinus infection, both eyes were infected. She seemed to have been getting better, but this morning she is sneezing and sniffling....who knows. We had her CBC done Thursday and they were pretty good. They held for a month, because we had gotten them done right before we left on our trip. Her white cells were 5.4...that's good but a little high for her so I am wondering if that is a sign that something is going on, could be the sinuses are flaring up again. Her hemoglobin was 9.4...for and FAer that's OK, and her platelets were 24 and I think a month ago they were 26, so I am happy with those. I am sure we won't get them done again till we go to Cincinnati.
I'm hoping this week coming, we have no other mishaps and only have one scheduled appointment and that one is for Marshall. We go to the ENT to get a check up and, lucky him, a scope of the sinuses! Amelia has to go to school, she has LEAP testing to do on Tuesday....pray she feels better so she can fully concentrate on this test as her passing depends on it!!!
I'm also praying that when Ty goes back to the doctor on the 31st the doctor releases him back to full duty! We are dying with out the help of those details!!

Well I gotta run we are heading out to another crawfish boil...yeah I know your jealous Stefunk!
We had one last weekend at my mom and dad's and now this weekend yum!!!


Here's what Amelia had for breakfast!! The Breakfast of Champions.....

Sorry

Sorry guys, I had every intention on getting to the rest of Vegas Day 4 on here today. I had actually started on it when all...excuse me for saying.....when all hell broke loose. Amelia had thrown up two times this morning and then she was fine for a few hours and then around 2:30 she threw up again and this time she had blood in it. Well I freaked, sorry but memories of Marshall throwing up blood and massive brain hemorrhage came rushing to my mind and I kick it in to over drive. And well being that I can't drive called my mom and thankfully they hadn't driven the 25 minutes home yet but were actually only less than 10 minutes away. I also had to get the other kids taken care of as it was time for them to get off the bus. My head was spinning. Anyway long story short...yes I panic, I know this every one knows this, but hey this is my sweet little princess we are talking about here...any sane parent would. We did the cbc count and her platelets were Ok and the doc checked her out from head to toe, Thankfully it was only the one time that she threw up the blood the rest of the time it was the dry heaves as she had nothing in her. He gave her a shot of Phenagren and she has been sleeping in my bed ever since, I will give up my bed to her tonight and sleep on the sofa...its a worthy cause. I had to put her in my bed as her room is upstairs and well in my present condition its just a tad bit hard to climb the stairs!
Tomorrow we will start introducing the bland foods....lucky her...... I will keep ya posted and maybe get to the rest of that post tomorrow. And she might just stay home the rest of the week as I just heard that the regular flu has once again struck her school!!!! UGHHHHH.....
Thank You all for continuing to pray for her!
Blessings,

A quick update

Today was much better than yesterday and last night. Yesterday she just kinda moped around most of the day. Till last night when her fever hit 103.4. That really scared me. The doctor gave me an antibiotic, just in case I felt like she needed it. Well to be on the safe side I ran to Target and got it filled, ask the pharmacists if there was anything else I could do for her and of course the answer was no, just round the clock Tylenol...of course he asked if I was switching it up with the Motrin, because it is better at getting the fever down..but sadly she can not have Motrin as it depletes the platelets even more and we would like to keep all she has right now. Her platelets were up to 34 when we went to the doctor so that was somewhat of a relief!!! Up is always better than down. The other day I found a CBC from when she was about 18 months old and it made me cry. her platelet count was 289!! I remember just a year ago when Ty was real sick and having to have blood counts checked because his hemoglobin had dropped to 7, which was pretty dang scary too as a normal for a man should be around 13-16. But I remember this because he saw how high his platelets were I think around 330 and it made him sad that his were so high and hers were not. I remember him telling me he would give her all of his so that she could go and do the things that she wanted to do!!! I agree I would give her all of mine too. I wish that there was some way that they could take some of my bone marrow and some of Ty's marrow and mix it together and make the right thing that she needs!!!! But no we must rely on a stranger to be so kind as to donate theirs so that my child may live.
Any way didn't mean to get off the subject as I tend to ramble sometimes....
But today was a much better day for her as far as the fever goes, it never got over 99 all day! yay but she still has the nasty cough and stuffy nose. I am praying that tomorrow is a much better day for her. I hate to see her so sick.
Thanks for checking in on us an I will keep you posted on how she is doing.

Still sick....

Well there is no insectarium in our future today! Amelia woke up still running fever and coughing and really congested. She is so mad with me that I won't let her go. But its just not worth her getting sicker. Her white cells are low at 2.3 and her ANC count is low which means she is susceptible to catching something else and the swine flu is all around us...she just doesn't understand that if she catches something it could land her in the hospital and that is just not a risk I am willing to take with her!!
My mom is going to come and watch her while I take Marshall in for his IVIG infusion today....
Nathan is off at school.
Please keep Amelia in your prayers that she gets over this with out any re-precautions to her Bone marrow!! Her platelets yesterday were 34 which is pretty good (for her anyway...a normal count as most of you know is anything above 150!!!) We just keep hanging on....one day at a time, its all we can do.

Just a Virus....

Well we went to the Doctor and after many test, we have defiantly ruled out the flu...especially since the swine flu is all around us here. It is a virus, they did a finger stick and her white cells are sown to 2.4 which indicates a definite virus that just has to run its course. As we were leaving Target, we saw the mom who we are going to Vegas with, with her little boy and guess what he has the same thing!! Just a virus and it has to run its course, they complain of a headache real bad and a bad stomach ache. She was doing better till a while ago we just took the temp again and it is up to 101.3...ugghhh I hate when my baby girl is sick, but she is a true trooper. She rolls with the punches and keeps on going.
We are suppose to go on a field trip tomorrow with her class to the insectarium, I have to make that call in the morning. She really wants to go, and I've paid for both of us to go so please say a prayer for her!

Prayer request please...

Greeting Faithful friends and followers
I am asking for prayers for my princess, shes not feeling well. The flu has been going around her school like crazy!! This Am she woke up complaining of her throat hurting and a head ache and she was saying how cold she was so, I took her temp and it was 99.6 which for her is a fever because her normal temp is usually around 96, and that was also after I had given her some Tylenol about and half hour earlier for the head ache.
The flu and the swine flu has been running ramped around these parts! I am just praying that it is nothing, because if she gets something it might hit her hard and possibly put her in the hospital and might drop her counts more!!
Please keep her in your prayers. There is nothing that I hate more than a sick child! (and not just mine any child)They shouldn't be sick they should be able to live, love, have fun and enjoy life!!
Which leads me to this: Dianna a sweet little girl who lost her battle with this horrid disease Fanconi Anemia! Please stop by and send some prayers to her family!

I'll update as soon as I get home from the Docs with Amelia. We have a 10:45 appointment.

Life in general....

Today has been an emotional one for me, and truth be told I'm not sure why all of this hit me today! I am thankful that Amelia is for the most part stable. Her counts are not the best, but they are holding for now and not having to go to transplant just yet. I have been pondering decisions all day today. I hate being the one to have to make life or death decisions...I have so many regrets with Marshall, I know he is here and doing pretty good but the road to here was pure HELL!!! I never want to have to go down that road ever again, but the sad part of reality hits me every time I look at my beautiful daughter....

I know that a bone marrow transplant is in her future, there is no getting around that. It is the when that I am having a problem with. I have been reading a lot about, androgens and how they can help bring up the blood counts and keep her held off on a BMT for a while, while they get better at perfecting the transplants. Then I talk to her transplant doctor and he would rather not put her on androgens as they can increase her risk factors during a transplant. I so want to be selfish here and say screw it and put her on the androgens, I want her here for ever...I would give anything to trade places with her! I would die in a heart beat so that she could live a long happy healthy life!!!

I know that it is in Gods hands and what is to be will be, but yet I am still responsible for making the decision to speed it along or slow it down....my head is in a fog and seems to be swirling with all kinds of information...sometimes I really wonder if knowledge is power! I so wish I could see into the future and see what decision I am suppose to make......

Well I have rambled enough....this too shall pass......

UPDATE...

Ok as promised, I'm getting back here to update on Amelia and Nate. Picked them up from VBS, which I must say they are have a blast at and in a few week another church across from ours is having VBS with a crocodile theme and Nathan saw that on the way to the doctors today and went wild! He is ready to go there. Any way I brought them to McDonald's after for a little lunch. I ran into a friend from Jr high school, it was great to catch up.
Anyway to the doctor we went...she is too sick to get a vein stick to check platelets this week...we did do a finger stick and her platelets were still 27, we will wait till next week and get her blood work done if she is better. The verdict on her is that she has that stupid sinus infection again that has moved into both of her eyes, poor thing has such a hard time seeing in the morning. Her eyes are usually swollen shut...but once I put the eye drops in she is usually OK.
Nathan is not as bad as her..yet, Dr. Casey gave me some Rxs for Nate but said to hold on to them and if he gets worse then fill them. His immune system is up to par and should be able to fight this off better than hers.
It is also that time of year, the time that I dread the most!!! I need to contact Ochsners and see if they still have a hematologist available to do her yearly Bone Marrow Biopsy, we are going to do it some time in July this year that way she will have time to heal from it before school starts. I need to start working on it now though as some of her marrow needs to be sent to Minneapolis and they have to coordinate with their lab. I am just praying that they still have Dr Ducos for us, because I really don't feel like: A) going to Children's hospital...or B) taking a trip to Minneapolis...because if that is the case I AM NOT DRIVING!! Maybe Mimi and I can make a girls trip and fly just the 2 of us, although I know that dad won't be happy with that as he hates to send us that far away with out him to be there for both her and I! But I'm getting a head of my self so I will start next week with trying to set that up here...With all the new research that has just come about in FA research where they are using the patients own skin cells for transplant, Of course it is still a few years out....But I pray there are no abnormalities in her marrow and NO CHROMOSOME 7 abnormality!!! I need to keep thinking happy thoughts, and keep her here for as long as we can!! I still hope and pray we don't have to go to Minneapolis for the winter!!!
I also try very hard not to think about the ever present obvious, the seriousness of her disease and how dangerous a transplant is especially for her as she is so tiny and only has one kidney...you will never know how my heart aches, I just can't imagine my life with out her. I have accepted that, that is a possibility, but of course I am not prepares nor will I ever think I will be prepared for it...
Anyway I think I have rambled enough for tonight...but sometimes you just gotta let it out. So please keep her in your prayers, that she may fight this infection and that it doesn't bring her counts down any lower!!
I would like to try and promise to update again soon, but I have learned not to promise anything...I will though try my best to update on Saturday as Sunday is Amelia's 9th birthday!!!I cannot believe she is 9 already where does the time go?


PS I also hope to be back with Tasty Tuesdays soon too! and some new pictures too....

Neglect

I know that I have neglected this site and I promise to be back soon...but for now I need to ask for a little bit of prayers for Amelia...she is going to the Doctor this afternoon and she is not feeling very well at all...she has not been sick in quite a while and this seems to be really bad both eyes are swollen and yucky her throat hurts she is coughing and a yucky nose! And her birthday is Sunday and she wanted to have a pool party, but it doesn't look like its gonna happen!!! I'll up date as soon as I get back with them!

THANK YOU!!!

Just wanted to say a quick thank you to all of you for saying prayers for Amelia...she did great her hip look AWESOME!!! We got a ticket for another 2 years!!! Her right hip was at 20* the left hip which is the one that was always in the socket, was at 16. Dr. Bennett said that anything under 30 is normal and does not require surgery!!! We were all so happy, it is always nerve wracking anticipating these visits!!!
Thanks a Bunch.....

Prayer request.....

Just wanted to ask for some prayers for Amelia. Tomorrow we are going to the ortho doctor for a recheck of her hip. We haven't been in two years, she has been doing that good. We need that hip to continue to be doing good so that we can avoid surgery, surgery would be a challenge for her considering her platelets are so low. That would mean a transfusion, something at this point that we would like to avoid at all cost!!! I will let you know what the doctor says tomorrow afternoon...In advance let me say a great big thank you to all of you for continuing to keep my family in your prayers they truly do mean a lot to all of us!!!

HAPPY FRIDAY!!!

Hello every one, I know I haven't finished updating about our trip I've been a little busy this week. I hope I can get to it over the weekend. I wanted to do a quick update this morning..well, because I've been on cloud 9. We went on Tuesday to get some blood work done on Marshall and Amelia for the endocrinologist. Well poor Mimi had to be stuck 3 times and was so worked up...but anyway yesterday afternoon I found out the results of her blood work...First last month she was at
wbc 4.6
hgb 10.2
platelets 29

This week they were
wbc 3.9
hgb 11.6 and
are you ready for this.....


Platelets were 44!!!!!!
Keep those prayers coming she is doing great!!!!

Update.....

Thanks everyone who said a prayer. It was not pink eye, the pediatrician seems to think that she got something in her eye yesterday and that it was irritating it and maybe starting to get infected. They looked much better this afternoon, and no longer has any gunk coming from it. He started her on some eye drop antibiotics....

Prayer request....

Greetings faithful followers,
Amelia, we think, has pink eye. I am taking her today to the pediatrician to get it check out. I know that pink eye is not really a big thing, but when you get one thing it can sometimes lead to more as this may mean a dip in her immune system, something we really don't want. We want her to stay as 'healthy" as possible!
It just started late yesterday afternoon, she had been complaining about it itching, at first we thought she might have gotten something in it. We had taken them to Global Wildlife yesterday ( pictures and trip summary to follow later) and it was windy and the dust was flying. Later though it was starting to ooze gunk from it.....

My biggest fear is that it will cause her to catch more things and I really don't want that to happen to her, she has been doing really well and not getting sick very much, she has barely missed much school, a great accomplishment considering!!!
I'll let you know later what the doctor said, Thank you in advance for all of you prayers and thoughts.....
Blessings,