Guilt

It is a funny thing. I feel guilty for not carrying the twins longer, for things I have said and for things I didn't say. I take to much to heart. One little thing someone says sometimes may hurt me so deeply but I never let it show. I do my best to only my truest of friends see my feeling through and through.

Lately, there have been lots of guilt issues. Did I do right by this person? Should I have done X? Did I not understand? Was it my fault? Am I so horrible?

For those of you who think I act like a saint...

Ah, you know who you are. I saved your emails for entertainment.

Well I am by no means a saint. Here are all the reasons why.

1. I do what I have to for my children so they can have the best future and quality of life possible. But it tires the hell out of me. I call everyday about something. Be it equipment, appts, supplies, etc. I get sick and tired of it. But I do it because I love them and no one else will.
2. I do angry and sad about all the crap we go through. Sometimes I cuss and cry. But then I manage to pull myself back together and get on with life.

Some days I get sick of all shit, excuse my language. It seems we never get a break. Don't take this as saintly, but I feel that everyday I am fighting for something for the kids.

I have actually got to the point where I can't remember crap it seems. Plus, my vision is going bad. I live on chocolate, pretty much.

I HATE IT THAT I HAVE TO WORK AND KEEP MY INSURANCE. WE HAVE MEDICAID. BUT THEY WON'T AND CAN'T PROVIDE THE TRANSPLANT COVERAGE ISABELLA NEEDS. I AM BINDED TO MY JOB. BECAUSE IF I LEAVE IT IS LIKE I COULD PLAY A ROLL IN ISABELLA'S DEATH BECAUSE SHE WOULDN'T HAVE LIVING DONOR OPTIONS OR MULTI STATE LISTING. THE INSURANCE HAS AN UNLIMITED LIFETIME MAX. IT ISN'T THAT I DON'T LIKE MY JOB. BUT I USE MOST OF MY TIME OFF FOR THE KIDS APPTS AND STUFF. SOME DAYS I WANT TO BE SAHM. I FEEL LIKE ONE DAY I WILL LOOK BACK AND REALIZED I MISSED THE BEST PARTS OF THEM. I GUESS THAT IS WHY WHEN I AM WITH THEM I TRY TO CHERISH IT AND LOVE AND KISS THEM.

I am stressed. We leave for MUSC again tomorrow. I hate driving that far. It is an exhausting trip and Landon and Isabella both are going.

I can't even seem to keep up with things at the house right now. It seems like I am going in circles trying to get stuff done. I don't know if it is the move or what. I just feel very discombobulated and stressed today.

Gatorade!

Well it is a scorcher here in the south and I have been drinking some gatorade. Well Landie Lou has had a bit of allergies. And as we all know unless they were to get really bad the only thing we can use is benadryl due to his heart. It actually clears him up in a couple of days.

Well during this time he usually isn't thrilled with eating and he really doesn't like juice all that well. So I took some Gatorade and mixed it with his oatmeal for a Gatorade smoothie this morning. The kid can't get enough of it!! I love it. Not the most calories. But it gets fluids in him when he isn't feeling the best and it is hot outside!!

Landon is becoming a bit more vocal...

It is mostly just noises, but it is still a change. He is moving around on the floor alot more and even in the bed. I always said he hates his belly. So this past week. He would rollover in his sleep on his belly and then start crying!!

Updates!!

Isabella will be having a CT guided liver biopsy on Thursday to see if the new spot is just a fibrotic change or cancer. So prayers that it goes well.

Landon on the other hand hasn't had any other Tachychardia episodes in his bottom chamber!! WAHOO!! His pressures were great and his heart looked good. So nothing with him till we transmit pacemaker in November and see cardiologist in January!!!

There has been so much going on my head is barely on straight.I am not a member of Costco. That is new.

ATTENTION ALL PARENTS OF SPECIAL NEEDS KIDS. YOU CAN USE YOUR FLEXIBLE SPENDING ACCOUNT TO PURCHASE ITEMS SUCH AS SWITCH TOYS, COMMUNICATION DEVICES ETC!! I JUST DID IT!! USE FLEXIBLE SPENDING ACCOUNTS IF THEY ARE AVAILABLE TO YOU. ALL THE MONEY IS AVAILABLE UP FRONT. SO IF YOU PUT A $1000.00 IN IT IS AVAILABLE THEN. THE FUNDS/PAYMENT IS THEN DEDUCTED FROM YOUR PAYCHECK OVER THE COURSE OF A YEAR. IT IS ALSO PRETAX MONEY, SO LIKE MONEY YOU NEVER MADE. SO IF YOU ARE THE ONE WHO AT THE END OF THE YEAR FLOATS OVER INTO A HIGHER TAX BRACKET. PUT YOUR MONEY IN FLEXIBLE SPENDING ACCOUNT. IT LOWERS YOUR GROSS INCOME!! THERE ARE SO MANY THINGS COVERED BY THEM NOW. EVEN TYLENOL, MOTRIN, BENADRYL, DIAPERS, MIRALAX.

well that is all I have for now. Hope everyone is doing well. Landon has a bit of a cough from his throat so we may have a long night. He is still a cute little booger!

News of sorts

Well it was a stressful day for other reasons. Like PMS and hemorhaging. Ugh.
In any case, Landon's cardiologist appt went well. His heart valves look good!! Wahoo!! We are just waiting to hear back on the pacemaker report to see if he had anymore 200+ beats in the lower chamber.
Isabella may be going to Pittsburgh to be seen by those drs as a consultation type thing of sorts. It is to hard to explain. She is such a complex little girl!!

We are loving the new house. I MEAN LOVING. The old a/c unit started dying but luckily we had a home warranty and it covered a whole new unit!!! Gotta love the home warranty.

I just feel so blessed. Landon has made some new strides and just seems to be sort of coming out of his shell more. Isabella is one little, sassy girl. I have met my match.

I am having some ups and downs in some related areas to the kids that I hope will calm down and that has made me feel weird. I don't like feeling weird.
Other than that we are adjusting and have some more things to go through but are getting settled in.
I don't know if I posted it here, but we are not getting cable. The kids watched Noggin and that was it. I never watched it because I didn't have time. So I am buying some of their favorite shows and we are doing Netflix. Should save us about $70.00 a month.
Well hope everyone else is doing well.
Take Care

Lanodn's little nose

Landon has some allergies that crop up here and there and he will get a runny nose. We can't use most any allergy meds because of his heart, so we use benadryl which after a couple of days really helps. But I feel so bad for the little guy. I have got to get some new pics and videos up of the kids.

I am hoping I will go through some more boxes this weekend, but something tells me that may not be the case!

What home is?

I don't know why. but I feel like we are meant to be in this home. It is much nicer than the other house and easier to care for the children. It is quiet. It is peaceful. I feel at peace here. We belong in someone special way, right here together.
I would have never thought I could buy a house this nice. Honestly, if is wasn't a foreclosure we wouldn't have gotten something like this. It is amazing.
I feel so blessed and touched by our Lord's hand that it brings me to tears.
Someone mentioned they pitied me. We don't need pity. Tonight, we laughed, played, chased Isabella away from the cat food, watched Landon take notice that he has a left hand. Then when they grew so tired and were giving me that please Momma put me to bed look, they went night.
Usually about an hour after they go to bed. I go in hook up Isabella's feeding pump and make sure everyone has covers. They are still in the room with me. Just in cribs. As long as Isabella has the feeding pump we will continue this way and we like it!! When I see them asleep, I hold my breathe and I am afraid of how time is flying by. I know that those children are nothing but a miracle and blessed gift. They bring more joy into my life than I ever thought possible. Of course, they bring stress and struggles. But that stuff means nothing because when I come home to them and get their sweet kisses and play. My world is complete.
In our new home, I feel so whole. Like this is something we needed. It put some distance between some folks who are pretty negative impacts on us. It opened up other doors for us, for me. For the first time, since the kids have been home from the hospital. I put pictures in a collage frame. I can't wait to adorn the walls with our photos.
My kids and I have found our pefect home.

Update

We are moved!! We love the new house!!
Landon went to Shriner's today and his bones and hips looks good. They said they can't say about walking or not because he is right on the line and his heart issues may have delayed him further.
We have been very busy with the move. Nothing much has changed. Will update more later.

To Parker's Grandma

I don't think you are getting my emails. Check your junk folder!!

We finally close on the house!!!

Ok, It is done. Finally. We are going to try to move everything on Saturday. So we should be spending Saturday night there if I can get everything as far as TV goes figured out and the phone and internet. Ran into a bit of an issue there.
It is so pretty. I love it and it is going to be great for the kids. Best of all we can afford it.
It is a blessing!

To much to do, To little time

Before I even start this. I don't think of myself as a martyr or saint. You know who you are. I am just doing the best I can in my situation and I trying to live life and enjoy it.

Well, between all the kids medical stuff, therapy, adaptive equipment orders, FSA problems at work and the close on the house being delayed. My brain is fried. I am just worn out. There are so many details. I have been trying to get my utilities turned on but have never dealt with a house with natural gas.
I had to change the delivery of my appliances and the installer of the dishwasher. I still have to meet with the security guy.
So on Thursday the final utility will be turned on which is natural gas. It is used for the hot water heater and heating. Then the appliances will be delivered and installed by lowes. Well the dishwasher will be delivered, but not installed. The guy who is doing some other minor repairs on the house is going to do it.
I haven't figured out what furniture I want yet. I am to the point I can't make simple decisions. Also, on Thursday I meet with ADT. So on Friday we are getting furniture delivered from somewhere and then this weekend we will move everything out of the house the kids and I are taking. The rest will be donated, sold or picked up by Jeremy.
Then hopefully within a week we will have the house I am in now cleaned up and out. We should be living in the new house full time by Sunday. I hope I can pull this off and have some energy left.
Then the guy that orders Landon's equipment just ticked me off today. I put alot of money in my flexible spending account to get some stuff for Landon that medicaid or medical insurance won't cover even though we it is medically needed, etc. The reason being is we already have one activity chair, you are only allowed one every three years. Well my employeer had a snaffu with the FSA accounts because they are submitted to our corporate offices to be sent to the vendor that handles. Well our stuff was never sent. So there is $4000.00 that I have started paying towards that I don't have access to, yet. My mastercard should be here in a week. So I explained this to the equipment guy and he was like I can't order it till you can give me the card. Well the man has already made a nice chunk of change off of the Squiggles Chair and Squiggles Stander. Those 2 alone billed out for over $11,5000.00. I am sure he made at least $1,500.00. I just wanted him to order it so it would be here when my card got here. It just bothered me alot.
I have decided to get the basics we need to live in the home and we will add more later. I really want to decorate this house. So the basica are covered.
Oh and Isabella's Gator Gait Trainer is here, but he hasn't brought it out yet and that bothers met too.
On top of all this other muck, I still have to work. I know, blah blah.
I also went and spoke tonight before the board that has helped with alot of our therapy services and paid for the ChildRite seat for Landon. It was nice to do that and I took the kids.
Oh and my van needs the oil changed. Landon's glasses need adjusted. The list goes on.

Did not close on house Today????

Yeah, well the seller's attorney's nit wit paralegal didn't file power of attorney for Spartanburg county. Long story. In any case, it should be Wednesday or Thursday now.
But we are almost there!

Did Landon say his first word?

Isabella is forever saying "Haayyy" drawn out and I say it back to her. Well I put Landon in the car seat this morning and he said what I thought was Hay. It could have been accidental or it could have been the word.
Since no one can say for sure. I have decided it is first word!!

Isabella's AFP Results

Her AFP came back at 30 which is the lowest it has been in almost 1.5 years. So this is a good thing. It makes it more likely that the spot we are seeing on her liver is a benign area that is a fibrotic change.
We are still getting a consult out of Cincinnatti and being followed by transplant doctors. Basically, she has a lot of eyes on her watching for any little indicator that this will turn or is cancerous.
So for now we just wait.

Prayer Request for Parker

My children have been through so much but there are children going through just as much right now. Parker is 19 months old and is one of those children currently waiting on a liver transplant due to incurable/resectable liver cancer.
Please lift Parker and his family up in your prayers for a liver to come soon. Pray for the family gives the liver as well.
Parker has been through alot in his 19 months. Much more than many of use could endure in a lifetime.
They need as many prayers and positive thoughts as they can get.

Details, Details....

I can get hung up so easily on small things. Well the close is almost here after almost 60 days. The property is bank owned and lets just say they are relaxed.
In any case, I have the appliances purchased and set up for delivery.
But there are these other little things. Like, I have to wait until the electric is back on and do a walk through because the house has been empty for so long I am it will need lots of new light bulbs. Plus, all those light bulbs are the old kind. I use the new energy saving kind. So as those burn out I will replace with those.
Details such as shower curtain rods and curtains.
The lawn has only been mowed so it looks like crap. There are weeds and weeds. But hopefully the neighborhood lawn man can get me going in the right direction until I buy a lawn mower.
Oh and there is a doorknob that needs fixed. Just all this minor stuff adds up.
Then I keep forgetting to buy bug bombs for inside the house. It has been emtpy long enough that I am feel fairly cofident about there being many spiders hiding.
So the day we close it will be late after noon. I am going over there and setting off many potent bug bombs. I haven't seen anything but one spide and that was enough.
Oh and with all this stuff getting delivered, meeting the alarm man and then with all of that going on Isabella and Landon still need a mommy and I have to work.
I must be crazy or I will be after this week!

Landon's Motor Skills

While he is still VERY BEHIND and there is a huge deficit. He is starting to make some bigger strides than he ever has.
Landon has never touched my face. Today he was laying on the couch with me and he even got his finger in my nose! I don't know if he was trying. He is doing more and more with his hands and it feels good to see it happening!!

Pulled Together

So I am pulled together now. We r still waiting on her AFP results. But this is a 3 day weekend for us. So we are going to chill out and pack.

Oh and look at switch toys. Landon's EI brought some out and he LOVED THEM. So now he must have some of them. They are great.

He is doing so much more with his arms and hands since getting our squiggles seat. I mean like putting his arms straight out and touching more things.

Isabella didn't sleep well last night so princess is asleep right now and Landie ias watching some cartoons!

PMS and kids

You know it would happen that we get Isabella's MRI news during PMS. Of course, that intensifies it alot. So of course tonight I am a big ole cry baby. I am just embracing it and letting the tears fall.
It isn't guaranteed to be cancer. We have found a benign lesion and a cancerous one. There just aren't cases like hers very often. If it were to ever get out of her liver SHE WILL DIE. There is not cure. That is why you remove the liver or you remove all the cancer from the liver if it is back.

When the sitter brought her to me so I could take her for bloodwork, it just broke my heart. Sometimes I am looking at her in the eyes and I think she might know that my heart hurts for her. She is like a flower that has blossomed. There isn't a day here with her and Landon that something special doesn't happen. But then there isn't a week or month that something medical doesn't happen.

Usually when Isabella lays down for the night she will cry for like 1 minute, well last night it went on a bit longer and she gave me this look and actually squeezed a tear out. I was like, ok. My twin bed is in their room. So we laid down on the bed. Landon was in his bed, knocked out. She sat there and jabbered and laid her head on my shoulder, tummy and face. She plays with my hair and face. I just can never imagine not having her here with me.

I feel the same way about Landon. He is always smiling. His smile can move me to do anything.

I know life is uncertain and nothing is guaranteed, but I just don't feel like we have ever had a period of time where it is like we aren't battling for the kids to live. Landon is ok right now but there is that new thing with his heart that I have no idea how will turn out, just like with Isabella's liver.

It is stupid because even though all this is going on, I wouldn't change it because that would mean not having the kids. I was an only child and never had the slightest clue how much you would love your child. They become a part of you. The kids are so deep in my heart.

Today was a day of not great news. Tomorrow may have more since the AFP may come back high. We will just have to see. By tomorrow I will have slept and wrapped my head around it once again. Then I will be strong for Isabella and Landon. I try to never cry in front of them because I don't want them to know anything is wrong especially while they are this young.

Well I am going to go finishing crying and look at pictures. Yep, I am totally wallowing in it tonight.

Here we go again...Isabella's Liver

There the 2 lesions we were concerned about before have shrunk and that is great. BUT, there is another spot showing up on her liver. The tumor board at GHS has reviewed the MRI and do not think it is blood vessels. The following will be happening to see what needs to happen on a full scale. Isabella’s last AFP was on 5/13 and it was 48, which is good. We will do another AFP today.

List of what is to come:
1. AFP on Isabella today
2. MUSC will also review the MRI and give feedback. It will be next week before we hear back.
3. They are waiting on the final slides from the original liver biopsy that Isabella had in 9/06 at SRHS so they can send a complete package to the hepatologist in Cincinnati who is going to review her entire case from the beginning till now. He will see every scan she has had done. This is a consult and we could be required to go there if he needs to see her in person. It is hard to find a hepatologist for pediatrics. The only other one was in Atlanta and my insurance would not cover a transplant there.
4. The MRI will be repeated sooner than later. Probably in a matter of weeks. I would say early August at the latest.
5. The results of today’s AFP will also drive what we do. If the number has jumped a good bit it will be an indication that most likely the cancer is back.

So the most important thing is to never let that cancer outside of her liver no matter what because there won’t be any treatment left for her if it does. There isn’t any reason to believe that if it is cancer that it would be outside the liver because this spot is very small. The things I have been told about liver cancer is that it is slow growing so this worries me because the last MRI was in March and it took a few months for something to show up. So being small doesn’t mean it isn’t growing. The AFP will be a good thing to know. I hope we can find out before the holiday but I doubt it.

Take Care,
Chasity

Landon's New Chair

It is something like the bumbo but alot larger. It is called the Child Rite. Here is a picture. It is a more relaxed chair for him. I love it and he loves it and I love him!!

Landon is reaching for legs!!

This may not seem like a big deal to some but he is trying super hard to get those legs or feet in his hands. Also he can lift his head about 4 inches off the floor when laying on his back just using trunk muscles. this gives me hope for his long term sittinng!! Go Landon!