TIRED!!!

This week has been super busy!! Getting plans together for all of us to fly isn't easy. My kids are not airport friendly between pacemakers, gtubes and feeding pumps plus all of our accessories. But I think I finally have it all figured out.
Plus, I am having to get some special car seat that turns into a stroller since neither kid is walking yet. Brand new they cost $250.00. So far I have found one used here the area. Please let me find one more.
Well our vacation is in 2 weeks pretty much. The flying was really my Mother's doing.
It is really hard for the kids and I to fly and we have never flown before. But we have so much stuff to take. Plus, we are letting Grandma come:):)
We were supposed to drive but my Mother who is compulsive and does things before asking me sometimes bought the plane tickets when she found them for a discounted price.
It will be nice not to have to ride or drive for 12-14 hours. But it is still alot of prep work.

All of that aside, I am trying to get sorted through everything here for the move. Tomorrow is my biggest task which is cleaning the storage/cat's room. It needs SCRUBBED. As tired as I am right now. I just don't know how promising it will be.

Well, I hope everyone has a great weekend!!

What happens....

when someone can't really understand what you are saying and they are an adult?

Will Landon Walk????

There is a $10million dollar question. I don't know, but I sure hope so. Neither do the doctors, but we will work on it and see what happens.
I HAVEN'T GIVEN UP HOPE ON HIM WALKING. BUT IF HE DOES WE ARE A GOOD WAY FROM IT.

Landon is alive and I didn't even think that would be possible at some points. I never give up hope. But I know what may happen!! If it does he will have the most rock'in powerwheel chair on the market!!

We will just wait and see and do therapy and see what happens.

Oh readers

One NICU nurse in particular that lives in Spartanburg. Oh where are you?

Am I proactive for my children and looking out for their future and POSSIBLE problems. Well I just ordered a $2000.00 Leckey Early Sitting System for Landon.
In the next week we are getting in a gator gait trainer, squiggles activity chair, prone stander and a bath chair. All of these are to help Isabella get walking and hopefully one day Landon, too. Well he can use everything right now but the walker and with time who knows. But if I order this equipment and accept that we need it. Does that mean I have accepted that my children will have problems long term?

I have already bought a van with electric doors that can be converted to accommodate Landon's powerwheel chair when and if that time comes. He will also be seeing Shriners for their specialty in orthopaedics related to CP and other physical aspects related to it.

Landon and Isabella will most likely be attending special needs preschools this fall. Landon may be in a school that is private and more involved and Isabella a public one that has more of a variety of children. However, it has been suggested to me by 2 doctors, 3 therapists and 1 EI that she attend normal preschool. Does that mean she won't have learninag disabilities, ADHD or potty training problems. I don't know. This is the recommendations as of now. Plans always change and are adapt as the child changes or doesn't change. The drs have made no guarantees about Isabella's neuro state. Just that she is catching up remarkably fast and that it is a good thing and we will see what the future holds.

Landon isn't sitting unassisted and is 2. Hmm, I bet he will be walking by the end of the year. That will not happen, I don't know if he will ever walk. I haven't said he won't because I don't know and neither do the drs. We will provide him with lots of therapy and adaptive equipment to help him as much as possible. All sources will be exhausted to help him and Isabella meet their potential.

So for anyone out there who thinks and is certain that I think my child is neurologically sound starting now and forever more. They are wrong. This is in regards to Isabella and Landon both. There are things I am on the look out for and things we have had to address. I can watch for things, communicate with drs and therapists regularly. But I will not live a life that focus's solely on what they can or can't do as some parents do and worry about it as a constant.
Does it help them? No. Does is make them happy? No. Do I want them to be smart and not have issues, yes. If issues arise we will deal with them when they arise. I like to be informed and understand there are many things that can go awry.
But I will not treat my children which I believe are miracles and blessings. They are already perfect to me and the Lord. If they make straight A's in school is the least of my worries. I want them to have a happy, fulfilling life.

I know that our future holds curves, bumps and mountains. I just don't know what they may be. But I also know we will have joy. Never let anyone or anything take your joy. Seriously, it may sound crazy but have joy in your heart. When I am with Isabella and Landon. I have joy. So we are going to live, laugh, love, work, cry, struggle and do what we have to while navigating OUR preemie road. But I won't wake up everyday and be like well Landon you are a preemie and there are things you don't do well and never will or with Isabella.
But the moment something comes to any one's attention which includes family, friends, therapist and doctors that we should have seen about. Well then we will. Until then Landon and I will play "jump for your love" at night and giggle till he is so tired he can't hold his eyes open (yes it is on video but I am singing and no one needs to be tortured with that) but Landon loves it. I will swing Isabella and get crazy sugars and I love yous from her and let her sneak in my bed at night and cherish every moment I have with them.

There have been some expressed concerns about me being a single mother and the stress. For those omom gals who have known me for years? How do you think I am doing. You guys hear from me everyday. Some days I am a bit frazzled because between buying a house, having twins and working, we are busy. But little does anyone know that I have my Grandma here enslaved to wash all of our clothes and fold them!!! So I am not alone by far. I have support from many coworkers. I have insurance with an unlimited lifetime maximum. Meaning the only thing I beg for is equipment from Medicaid because my insurance doesn't cover it. But they have covered EVERYTHING ELSE. Between my primary insurance and medicaid, medical bills are not a concern. Not even a transplant. My family helps financially so that takes away that stress. Plus I have some great mom friends online that have been lifesavers. I wish my marriage had survived this but it didn't. I have long since mourned what we could have had together with the kids. But as for everyday life unless we are looking pacemakers, open heart surgery or liver transplant. I am not overly stressed. I tend to be go go go all day and at night run around here getting things done and then wind down. It would be harder being a single parent if I didn't have so many people who have helped in so many ways to get us where we are today.
Did I mention Grandma does the laundry!! & if I am really nice and buy her Butterfingers she empties the diaper champ!!
Prematurity is becoming a bitter debate and I just don't like children/babies being treated like experiments.
No matter how much medical or therapy stuff we have going on I always make time for fun. It may be rolling in the floor with the kids, bubble bath, riding in the wagon outside. But there is life outside of prematurity. This is coming from a Mother of a child with CP who may or may not walk. We are just trying to get to sitting now.

Well that is enough rambling to last a while.
I have to go drool over the leckey seat we are getting!!! I just love to look at it!

Has having preemies made me bitter?

Hmm, I don't think so. Honestly, I am pretty happy person for the most part. There are things that upset me. But I feel that happens to alot of folks.
I love my children and have long since accepted they will have lifelong health and prematurity issues. But that is ok.
Because we will still get up and have a good time everyday.
There are those of you who know everything about the kids and I and there of those of you who know pieces. I wonder who all would think I am bitter? Please feel free to leave your comment.
Now I must wake the kiddos and get ready for work.
I wish it was like the Jetsons where I would walk in a room and it would make me ready in like a split second!! Oh and have me breakfast and coffee made!!

Good Morning? Did you sleep well?

Isabella loves her crib and still goes to sleep right away when she is put down for the night. Well in the past few weeks she has started waking in the night and crying.
Landon, Isabella and I all sleep in the same room. But our own beds. They are each in their own cribs with me in a twin bed.
I tried calming her and talking to her but that hasn't been cutting it. So I picked her up and put in the bed with me and she was out like a light. I think she was asleep before I laid down with her. Now the 2 of us crammed in a twin bed. Not so much fun. But she is quite cuddly and cute!!
I just wonder if she can have nightmares or if she is reaching that point where if she were walking she would be headed to bed anyway?

Memorial Day

I think sometimes we forget that this day isn't just an extra day added to the weekend but to remember all those who have served and are serving our country. Please keep them in your prayers.

We didn't do much of anything, which was nice. I had a class on Saturday. Then I cleaned out the kids room. I have like 8 trash bags of stuff going to the Salvation Army. And boxes of dishes. The back of my van is full.
I have one more big room to tackle and then we will be mostly prepared to move when the time comes.
There are still some odds and ends to go through. If we aren't using it, not going to use it, don't need it, won't use it, etc. It is going bye bye!!

I am determined I tell you to be super organized in our new house.

I am trying to iron out our vacation details. That is even to much to write about.

The kids are doing well. Isabella has actually let go of the "commando crawl" and is now just up on her knees. Landon is doing great with thin liquids. These were very hard for him!! So this is good. He isn't perfect at it. But hey, we are still working on it. Also, finally yes, the teeth are coming. There are 5 total that have almost come or are already in. He is such a little man. I just love him to pieces.
He loves to talk on the cell phone even though he is non verbal. I can say do you want a phone call? He won't be looking at me yet to even see that I am holding the phone, but he is already smiling. He talks to his Grandma every night and coos and giggles for her in the phone and tells her how mean I am to him.
Isbella is a whole other ballgame. She loves to go where Landon likes the comfort of home. Isabella will go anywhere and is happy.
Well neither kid really likes the drs office.

Oh and our bath chair is here. Hopefully more of our equipment will come this week.
I put a new video up www.youtube.com/midnitesky21 that is a couple of months old.

New pictures will be up soon. We have just been so busy. Once we close on the house and get settled there I think things will settle down a bit for us.

Well I hope everyone enjoyed the long weekend. I did and it will be hard to get back in the work swing of things tomorrow.
By the way the kids original due date was June 26....
Take Care

Preemie's and OCD

You know what I can't wait until there is a study on preemie parents and how their behavior ultimately effects their child long term. Now that would be something of interest. A study that kept up with every piece of a preemie's life with their parents and doctors to adulthood and see how the different social, economic, lifestyles, religion, culture, etc. effected the preemies.

I am glad it is the weekend. A long weekend at that. Cleaning out the kid's room to get ready for our move to the new house. Researching some adaptive equipment and cleaning. Oh and watching Happy Feet with the kids. Who doesn't love singing Penguins?

Take Care

Oh my goodness!!

Landon and Isabella are preemies and may have lifelong issues? I just figured it out today. What shall I do?
Liver cancer, CP, feeding tubes - How could I have not known that they were born early and would have effects long term? Oh wait, let say it more appropriately. They will "suffer" long term effects.
I think for everyone who knows me and knows my children I am very aware of what long term can happen. For those of you who know Isabella and Landon? You know how they are doing.
For those of you who don't. You don't know my whole life. Only the parts I choose to share and write as an outlet, hobby, journal or whatever this turns out to be.

You don't know what I do each day for Landon and Isabella that never lets me forget their prematurity. However, that doesn't mean I have sit back and say yep, Isabella is gonna be stupid at something because of the prematurity. That would be stupid.

I know there are parents who have it worse than me and those who have it better than me with their preterm children.

I will still have faith and feel my children are a blessing and they can have a happy life. No one can change my mind about that.

Take Care

Things going on with us....

So here is an overall view of what is going on:

1. Personal care aide didn't work out. So now they are looking for another one.
2. I am obsessed with getting this http://www.leckey.com/template.asp?parent=96&pid=296 for Landon. I am still brainstorming.
3. Must save as much money as possible with buying the house. So we are being very tight.
4. The mortgage folks know everything about me. Even my bra size. Really, they know everything.
5. Isabella is eating and drinking from a sippy cup. We only did one feeding pump feed today.
6. I have actually rec'd harassing phone calls at work to the point where I had call the person's parents to have them stop. Then they did it again while I was at home and Isabella was trying to sleep. I again had to have their Mom make them stop. Oh and they would be a 32 year old man.
7. There is a still a little teeny,bopping twit in my life.
8. Landon is doing much better with thin liquids. Actually better isn't the word. He is doing great.
9. God is great and there are miracles and blessing all around us everyday.
10. The month of June will be very busy for us. Vacation to Arkansas 6/13-6/22. House closing 6/24. Start moving. Isabella's MRI 6/27. Keep moving.
11. Right now I am going through everything in my house. If we don't use it, need it, aren't going to use it, doesn't posess sentimental value, belongs to someone else who won't come and get it or is junk, I am getting rid of it.
Yep, I am determined to start out in our new hour nice and organized. Seriously. I have actually went through pots and pans. Donated cell phone chargers that I have no idea what cell phone they went with.
So I have been making a list of things we will have to buy when we get in the new house. I will name a few.
Dishwasher (the house is a foreclosure and sold as is. home inspection found the dishwasher to be leaky, the house is 9 years old, hence the dishwasher's age. So we are going to replace rather than repair it because of the age)
Refrigerator
New smoke and carbon monoxide protectors
fire extinguisher
Electric Lawn mower (by the way, I have never mowed a lawn)
Electric Weed Eater
Tool Kit and Belt
Remote control handyman

This is a long post, but the kids are doing great and we are super excited about the house and going on vacation. It is just really busy right now.
Hope everyone has a great memorial day weekend.
Take Care

Leckey Squiggles Products

First, I love their stuff. I mean love it. But they have this new early sitting system and you must see it. Go to this link.
http://www.leckey.com/template.asp?parent=96&pid=296

I am going to be doing my best to get Landon one. It can be used as a booster seat and get him on the floor with Isabella. Plus he will be able to build more strenght in his arms and trunk and neck!!!
If anyone wants to buy the chair for us, I will take it. I used to be to proud for charity, but I love this seat because it would be so wonderful for Landon and Medicaid or my medical won't cover it.

Adaptive Equipment Update

Ok, after going into lunatic phsychotic Momma mode and calling Medicaid like a nut case we got the approvals back for everything except Isabella's activity chair, but we are going to reapply for it. Getting Landon's in is more important because he doesn't sit unassisted.
But they came through and got it done. Would it have taken a lot longer if I didn't call constantly? I am not sure. I wish all kids authorizations were turned around that quickly. If I was rich and could stay home and be the person that fought for us all. I would. Truly. Just because our children require extra things and help to get further along in life doesn't mean they should be denied those items or have to beg. It isn't right. Any way you slice it!

AFP and what it means to us on Friday?

AFP is Alpha feta Protein. It is an indicator of a tumor in the liver and/or liver regeneration. We have been watching Isabella's very carefully. We did new blood work this week. I was on pin and needles as usual. I am worry about the results anytime we have blood work. I got this call thie afternoon. HER AFP IS 48.3. That is the lowest it has been in almost a year!!!!!! This is great! She is still at high risk, but this is an improvement. Also, her liver panel WAS COMPLETELY NORMAL. That is right, everything was normal!!!! Wahoo, what a wonderful way to end the week.
All I can say is prayers have been answered!

Durable Medical Equipment and Adaptive Equipment

I am so frustrated. My primary insurance only covered 60% of the gait trainer. Which you know what, I was fine with because they have paid out 3.5 million on everything else. Medicaid has barely paid anything. So that means I have not had to deal with them. The good Lord knows if I could finance their adaptive equipment, buy it outright I would to avoid Medicaid. By the time we get approved for the equipment we wanted they might have already outgrown it.
On top of that Medicaid won't tell me the status of the authorization for the stuff. Only the provider. My medical insurance has never done this. You know no one wants to have Medicaid because their child is that sick, well at least I don't know. But we need this equipment badly. I still work and feel like I have done my part by having insurance. But when I need them we have to beg and wait. It has been over 60 days since we submitted for the authorization and no one can tell the status even to my provider. Here is what we ordered.
Landon
Bath Chair
Activity Chair
Stander
Isabella
Bath Chair
Activity Chair
Gait Trainer

Honestly, Isabella could walk with that gait trainer already here, but nope we may get it in 2009 for all I know. I promise today that if I ever win the lottery I will become some sort of patient advocate for things like this and have my own foundation that you can borrow, buy, rent, or get equipment for free. Our kids can do so much when they have the right support, but when you have to fight tooth and nail for it. I am tired literally today because of Medicaid. I feel like you have no rights when it comes to Medicaid. Maybe I am wrong and just used to my health insurance. But they sure ticked me off.

Happy Mother's Day

Being a Mother is a wonderful gift and blessing. Happy Mother's day to all!! Remember to enjoy every moment of everday.

We got a house!!!

Wahoo!! Yeah, it is perfect for us, affordable and more room. Get rid of this house with oil heat, yikes.
But now I am worried something will happen and it will be to good to be true and that I won't be able to get things like a lawnmower once we move.
Crazy I know, but please send prayers that all loan paperwork goes smoothly and the close goes smoothly. My kids and I really need this. It will bring so many positives into our lives.
Imagine a privacy fenced backyard that the kids can play in a kiddie pool where no one can stare at the g tube button or the fact that Landon has to sit in a bumbo.
Please pray this all goes through. I got the preapproval on the loan, but I am always scared something will go wrong.

Take Care

I am sick of people

I have tried to be positive on this blog, but today I am angry and want to get it out of my system. To love Landon and Isabella is to love them through good and bad. You don't get to choose what days of the week. I wish people who really aren't in this with us for the long haul and through thick and thin would stay the heck away.
Also, I don't want to be a martyr. What is that all about? Yeah, I pulled a muscle under my breast and took muscle relaxers to help with the pain. By the way, they do not kill the pain altogether. They were couple with Motrin. So it was said I was drugged and taking care of the kids. Well I don't know about anyone else but I was in to much pain to feel drugged. Yes, I have a pulled muscle and continue to pick the kids up and give baths and change diapers. It has to be done. I am very careful. Of course, it was brought to my attention that I might drop them due my pulled muscled. Ok. whatever. On top of that, being a martytr isn't near as much fun as getting sleep or going to a movie. The kids need to be cared for and have things done. I just can't sit around and wait to see if someone is going to come along and do it for us. I advocate for my kids and demand the best care for them. I am a Mother and nothing more. For those of you who don't like it because they most likely aren't offering to help and if I ask it is like I have asked for a million dollars. Just stay away. I will manage just fine without your petty negativeness in our lives. The kids won't miss you because you don't come around enough. I am just sick of people in general lately. There isn't a perfect Mother out there. I am not perfect. I do try to be a good Mother. No more ugly, mean, negative people in our house. We are happy. We may not be rich and we may not have 52 inch tvs and I may not have a buffet table in my dining room but we are still a family with or without anyone else.
Love,
Chasity, Landon and Isabella

I just don't understand

You barbQ when my kids are having surgery. You can't meet us for prayer before major surgery and show up an hour after my son has gone into a 12 hour surgery, yet you want us to drive a mile down the road to see you. Pack up feeding pumps and supplies after we have ran back and forth to work and the sitter's.
The kids are treated differently than your other Grandkids. Not one of you has been to a doctor's appointment. I have sat in line at the pharmacy because you left to go see another child get a reward and my kids were screaming in pain. This was 2 days before Isabella was hospitalized for RSV. We come to your house for Christmas at the time you set to be ignored and have others show up late. Other Grandkids get blowup houses to jump in for birthday and cookouts. Yet Isabella and Landon doesn't even get anyone to show up on time for their cake and presents. Yet you want them to come to your house. There are at least 12 beers per day consumed in your house, but you want the kids to come over there. If you cared about the kids so much maybe you would be over here seeing them on occassion instead of going to the other grandkids awards and ballgames every night. Isabella and Landon may have special needs but they do not deserve any less than the other grandkids and must be treated as equals. I will not have them in an environment where there is preference to other children and it is obvious. That happened at Christmas and will never happen again.
No one wants to help when they are sick, need surgery or need medicine picked up. That is why you are visitors. Period. The audacity of some. You do next to nothing to help us make it day to day even though you and your family live a mile down the road. Isabella sat alone in the NICU while I was gone with Landon for his first heart surgery while her Daddy was drinking everynight. Her primary nurse washed her clothes. There is plenty of vacation time for going on fieldtrips with other grandkids but when it comes to spending time with Landon before a heart surgery in Charleston that is to much. If you really love and want to be around a child that is what you do. When you want it to like you love you a child and want to be around them. You fight for it when you don't want it, be it the Father, Paternal Grandparents, etc. If you have nothing positive to bring to our lives and don't care enough about the kids not to have a cookout on days we have surgery or drive 30 minutes to the hospital when Isabella has been in surgery for 4 hours and we find out that she has a rare cancer removed from her liver. Just stay away. I hate fake people in our lives that want to like they want to help and be there, but when it comes down to it, they are just as fake as the Jessica Simpson Hair in closet.

Landon doesn't like what he doesn't like

Well we went to look at some houses this morning and my Grandmother came with us. So I would get out with the realtor and check out the houses. The kids stayed in the car with Grandma and video player. All was going well. After checking out the houses I had to go buy the princes some size 5 diapers since the size 4's have started fitting like bikinis and are riding up her bottom:):)
So that is done and we head to the mall where Grandma and I both have hair appts.
I didn't have a sitter and they kids had to come. Isabella is loving it.
She loves the shopping and being out and about. Landon, not so much.
He screamed the entire time we got our hair cut. I was so embarassed, sort of. He wasn't hurting. He wasn't hungry. My hair really needed cut, not an emergency. But it had been a while. As soon as we walked out the door he was smiling!!
I bet those folks in the salon were praising the dear Lord when we left.......
Hopefully we will be getting some help in the home soon and I won't have to torture Landon by taking him to the salon or those around him:)

What a week!!

I am losing my Angel Sitter. Sadly, her and husband will be getting a divorce and she will be moving to Oklahoma City. It won't be overnight, but it saddens for their marriage and for everyone involved. Found this out on Tuesday.
Monday I fell and pulled a muscle in my chest of all places. It really didn't starting hurting really bad till Thursday. Right now it is hard for me to even put Isabella down on the floor because I bend over. Ugh.
The house hunt continues. We are going to look again tomorrow. Hopefully we will find the perfect fit at the perfect price for our budget.

Oh and I heard back from the doctors at GHS about sedating Isabella. Pretty much they all want to put her general and they haven't saw her. So everytime she has a scan (MRI or CT) she would have to be intubated, etc. We are having serial scans and they are going to have to provide me with reasons why she can't be given something lighter and get oxygen, if needed. She won't have anything in her tummy so the rick of aspirating is low and if she gets any contrast it will be by IV. So I just can't see putting her through the after effects of general when there are cleaner drugs that don't leave her feeling bad. So I have suggested we all have a meeting. If they can show me why she can't do anything but general then I will understand, but there needs to be a medically sound reason behind it. They are going to have to give her the benefit of the doubt at some point. She hasn't been on oxygen at home in 8 months. She goes home without oxygen after general. I think that in itself says somethng.