Isabella said "I love You"

I said it to her and then she repeated it back to me. It was amazing and so sweet. She can be so sweet but then when she is sticking her finger up my nose it makes me wonder:)

Isabella and I had a girl's afternoon out

Isabella really hasn't got to get out all that much. Well just her and I went out on Saturday and she LOVED it. We went to mall and did a bit of shopping. She is just to precious.

Personal Care Aide

Since we don't qualify for nursing we are getting a personal care aide (PCA) which will be great. We have had feelers and looking going on for about 4 days now. This is going to help so much. I will be able to go to the grocery store and run errands. I just hope we find someone soon. I worry it could take weeks to find someone!! Maybe today they will call and say guess what? We have someone!!!!
Here is to hoping!

House Hunting

So we are going to try to find and buy a house while the kids are on hiatus from sickness. The hard part will be find a house that we can afford in a good location. Please send some positive prayers and vibes that I can find something quickly. I would really like to move on it and get it done before things start up again in June with Isabella.

I am not happy

I should be. I have wonderful kids and they are doing so well right now. But there are things in other areas of my life that are bothering me. I just need to let them go but it is hard sometimes. I try not to let others steal my joy. But I am human.
My feelings get hurt. I feel unappreciated and that I have don't have a loyal friend that I actually see on a day to day basis in person. It feels like highschool when someone tries to single another person out from the crowd. I hate it.
Honestly, I am a very giving and kind person until you cross me. If you really betray me, I may forgive you and move on. But it doesn't mean I will ever have any type of relationship with you beyond, hi and bye.
That is what has happened recently at work. I don't want to post on here about work because you never know who is reading and so it will be vague.

Some people think they understand what it is like to have my kids and they think it is quite easy what we do each day. WELL IT ISN'T. I am not a saint. But I think I have done pretty well working full time and getting everything done for the kids. I have coordinated therapy, supplies, prescriptions, dr appts, etc.

I have actually not had one true vacation day since 5/16/06. I have had the holidays such as the day after Thanksgiving and Christmas Eve. But that is it. All of my vacation and sick time are used for the kids.

Some people I feel think it is unfair I have had so much time off with FMLA, etc. Well, here is a clue. I would much rather be working that sitting in the waiting area while Landon has a 12 hour heart surgery. I would much rather be working when Isbella has to be evaluated by a liver transplant team. The days I take off all day are usually when the kids have dr appts in Greenville. I literally will schedule like 5 in one day. Yeah, that is super fun. What the heck is wrong with the people.
Then the newspaper article that the local paper did on us was called "dramatic" in a negative way by someone. Well call me a drama queen, but it is a bit dramatic. I am sick of immature people who just don't have a clue what they are talking about. Maybe they should stick to shopping and drinking.
My life actually has a bit more depth than that. I am just ranting today. Maybe it is PMS but there are tons of things bothering me and I don't want to keep them bottled up.

Landie Lou

Landon is just little still. Like he has gained weight and grown. His feet aren't even a size 1 yet. I wanted to buy him some little sandals or something but can't find anything to fit, any suggestions?
He is so cute and that smile can melt anyone's heart.
He is doing well in therapy and getting more strength. Landon's progress is more gradual than Isabella's. But progress is progress, we like it fast or slow:):)

However, he isn't liking keeping the glasses on. He will wear them for a while and then he sort of gets tired of them and moves his hands and bats at them till gets them knocked off. Since he wears croakies they just fall to his neck. Today he actaully scratched the blood out of the side of his face trying to get them off!! I even cut his nails last night.

Other than that I can't complain. The kids are doing wonderful and are the absolute light of my life.
I can't imagine my life without them. They are what makes everyday worth it. I have known a love like this. It is uncoditional, forever and encompassing. Honestly, I can say there has never truly been another person I would give my life for until the kids were born. They brought faith back to me. I have healed old wounds since they have been born from years before they came. They give me peace. They also scare the patootie out of me with all the medical stuff. But it doesn't change that I come home to them everynight. They are the best thing that has ever happened to me, they are a gift from God and miracles.

Isabella is eating....

She is doing great. But now she wants to feed herself which is even better. But then she doesn't and plays in it. Which is fine because I think this is normal. But I need her to eat. She pulls the spoon from my hand and sticks in her mouth a few times with a bit of food on it and then well throws the spoon down on the floor and plays in the food:):) But that is fine because she isn't afraid of the food. There is no crying during feeding and she actually likes it. Hopefully we can get her feeding herself more and playing a bit less!! This would make her happier.

Where did the weekend go?

I didn't do to much this weekend, I watched my sitter's twins with mine. My kids pretty much cried the whole time. Sharing me isn't something they are used to, well at least with other kiddos!
We actually got groceries. I don't know why that is one of my most hated chores. I think by the time I get home I just really don't want to go anywhere else. There are times on the weekend that I don't leave the house at all!
But the kids are doing well. Therapy is chugging along and so are we. Just sort of wish the weather would even out in temperature and that gas prices would drop!
I was thinking today about the kids and their NICU stay. I don't remember EVERY DETAIL as sharply. This worries me. I don't want to forget it. There are many moments that stand out very clearly still. I can picture them as they happen. Almost like watching a movie being played back in my mind. There are times that I want to forget. Times I want to remember.
I am at peace with Isabella's liver issues for the time being. It is hard to know that in June we could have surgery or not, or be listed for transplant. There are so many if's.
I just have to pray and have faith. In the meantime, we will enjoy everyday we have together here as a family. You never know what tomorrow may bring, as there are not guarantees with most anything.

Crazy stuff, I tell you!

Today a spider tried to attack me in my van while driving. No big deal, right? Well I have a huge, irrational fear of them. They make me sick and I freak out. A snake I can handle. Just not a spider. Since the "spider" couldn't be located and exterminated the van was cleaned and fumigated. FUMIGATED. You heard me. That spider could have been anywhere and with his legs he was at least an inch in diameter. It would have drove me nuts. What if he crawled on IzzyB and she touched him. I can't stand it.
So yes, I did have the van cleaned and fumigated. So the SPIDER IS DEAD ALONG WITH ANY LITTLE SPIDER BABIES OR EGGS!!! It is stupid, I know. But I can't help it.

Isabella's gait trainer was approved!!! Wahoo. That was approved by my primary insurance. Medicaid will be taking care of the rest of Isabella's and Landon's assistive and adaptive equipment. But Medicaid is slow and you can't ask where they are at on the authorization because you simply do not have that right. The only person who can ask is the company who submitted the order. Ugh.

Landie Lou got yet another perfect, stylish hair cut compliments of the oh so fancy "Mommy Cutteth the haireth salon". You can't tell if I mess it up because it is so curly and thick.

Isabella is still eating pudding - Go IzzyB.

The company that provides all of Isabella's supplies somehow didn't place the darn order I called in last week. They have made so many mistakes lately. It is driving me nuts but I have to use them because they are who my insurance contracts with. But I am going to talk to someone in management as soon as I have time.

Hmmm, anything else of interest? Oh yeah, that person who is causing issues is a pro!! Let me know tell you like Mission Impossible Spy Pro. But that is ok. I will maintain my integrity and not even go there. I am not bothered except for the friend I feel I have lost. Other than that I will leave the teenybopping to the young'ins!! I have prayed about this because it is hard to deal with on a day to day basis because it hurts my feelings. That bothers me. But I don't feel anger or any need to do anything vengeful. Hopefully things will run their course and settle down.

This tired momma will be headed off to bed very soon!
Take Care

Isabella's Liver Plan for now

Isabella has a "team" of doctors that will follow her. Right now, we can't say for sure there is cancer so she will be monitored very closely. We are not going on the transplant list at this time. I do not know what the future holds. But for now we are treading water and she is doing well.
The plan is to scan her again in 2 months to see if there are changes in the liver and the benign? mass we are watching. If there are changes we will most likely do surgery to resect that mass and see what happens. During this time we will also follow her blood work very closely.
I pray and hope that we will slide by this. That the cancer will never reappear and Isabella can keep her own liver. I just have to pray and have faith. I feel great about the doctors who are caring for us! She is in good hands.
We might actually get to take a family vacation now. It is yet to be seen, but we may be travelling to Arkansas to visit my family for a week in June or July. As long as the next scan goes ok. She is an amazing girl and she is gift.
Take Care

Isabella waking up in the middle of the night?

Ok, this little girl never wakes in the middle of the night. When she goes to bed, she is out like a light for at least 10 hours solid. Well the past 2 nights she has woke up. Night 1 she went back to sleep after I talked to her. Last night she wasn't having it. I tried the ABC song, nothing. I picked her up and she was fine. Tried laying her back down. It was a no go.
So this is a first. She ended up in the twin bed with me where she was very content. I love her and would love to sleep with her, but 2 of us in a twin bed? Not good. I worry about her getting between the wall and bed and all sorts of stuff.
Do you think she knew what she was doing last night by getting me to put her in bed with me? Is it possible for her to have bad dreams at this age? Of course, since we all sleep in the same room, it woke Landie Lou up.
This is just very out of the ordinary for her. But this could be regular toddler stuff that this momma just isn't used to!
Take Care

Weekend Fun

Well the weekend has passed really fast. I did work on the kid's and well my room, too; since i sleep in there. Nothing like 2 cribs and 1 twin bed along with other furniture all shoved into one room. But it is cleaned up!! One room down 5 to go, oh the fun.
Still feeling bothered about the Friend thing. But the kids love me and they are friends:)
I did rent the movie 30 days of night/dark, something like that on a whim. I rented it on payperview. Well it was a full on waste of my $3.99. I will just leave it at that!
Landon is so done with the pacifier. I actually can't believe it. I just put him in bed at around 7:30 at night and he might fuss for about 60 seconds. Really just whine is all and off to sleep. I love it.
Isabella is all over the place. Lots of childproofing to be done!!
Well maybe next weekend I will be able to sneak out of the house and go see Forgetting Sarah Marshall. I love comedies!
I think I will add a picture of Landon's wonderful smile. This is one of my favorite pictures of him smiling so far. It is almost a year old.
Boring post, but at least there is a picture!
Till next time.

True Friends?

Thank goodness for the weekend. It has been a long week and many things have weighed heavily on my mind. Things to do with the kids and me.
There seems to be someone in my life who dislikes me and seems to be working others, even someone I have known for years in that direction. I know there are probably many people that don't like me, that is ok. But to lose someone you thought was a true friend. Well it hurts and I have been thinking alot about it and it really bothers me. I know I don't do much outside of the kids anymore.
There has been way to much drama in an area of my life in the 6 months that isn't related to the kids. It has calmed down a bit, but it is there in the background being poked and stirred by someone just enough to know it is there.
I don't react or show any emotion to it because it doesn't really bother me as far as that person goes. They are young and maybe a bit immature and that is probably where the behavior is coming from. But the friend I seem to have lost due to all of this, hurts. I will admit it, my feelings get hurt. I have known this person for several years and considered us pretty good and even close friends. All of sudden she doesn't take my calls and really doesn't speak to me and I think it may be related to someone she has known for months.
That is hard for me to swallow, sometimes it is hard to find out who your true friends are and aren't. In the past two years I have learned who my true friends are and I have had my feelings hurt many times. But that is ok, feelings heal, it just takes time. I know this is vague, but I have to be as you never know who might be reading:)
I hope everyone has a good weekend. Mine is devoted to doing some spring cleaning, oh fun!

Landon got his glasses!!

I have a picture posted on flickr. He is just to cute. I really think they are going to help. He doesn't like you messing with them but once you get them on him, he is fine. He was really looking around once we put them on. It was great. He just looks like a little man!
Things have been pretty calm medically. We are going to be doing a scan on Isabella again soon to see what direction we should go. So we are holding steady.
Now that the kids are better immune wise I am really wanting to get back in church. I have been nervous about attending church by myself with the kids. I really didn't want them to go the nursery because of other kids...Plus, I want to be there for the sermon and Sunday school. Isabella would most likely need a feed during this time.
Anyone have any advice on what to do? Could I start her feed, go to Sunday school and then go unhook her once it is done and come back? Is that to interuptive?
I really want to go back to church.

My Angel Caregiver to the Kids!

I have that one person who I can depend and who I trust my kids with. When Isabella has to go somewhere and we are gone overnight. That is where Landon stays. When Landon had heart surgery and we were gone for over a week. Isabella stayed there. It is my sitter. But sitter isn't what Tracy is.
She is an Angel. Believe me, there isn't enough money to take on me and the kids and all our added stress. How many sitters will run a feeding pump? Or keep your child's oxygen on them? Work with them like the therapists does to help them advance. Make dinner for their Mommy just because. That is my Angel.
She is the only person I can leave my children with and feel completely at east. Since the first time I spoke with her about Landon and Isabella, I knew that she would be the one that could care for them.
I can't begin to tell you how amazing she is. Honestly, if it wasn't for her I would have lost it. Not having a safe, dependable environment for your child when another is sick, is just added stress.
I hope that one day I can do something for her to show her what an impact she has made on the kids and my life. She is the reason I am able to work.
She is wonderful and I would do anything in the world for her.
Tracy isn't a sitter, she is a nurse to my kids in sickness and health, a Mother, a woman full of life, strong, protective, careful, tender, reliable and all of the other good things that a person can think of.

Isabella and when she came home on 3/16/07

Has anyone ever seen their child on a narcotic wean? I have. That is sad. When Isabella went back in the hospital due to RSV and even with the RSV shot, her tummy being large just didn't leave her with any reserve. She was actually airlifted to another hospital. She was in the hospital from 1/15/07 through 3/16/07. During that time she was kep completely sedated. This included about 3 sleep medicatons, pain medicine and a paralytic to let the ventilator work for her. The only drug ever turned off was the paralytic. They turned it off everyday until she moved some on her own, then back on it went. 7 weeks of this. When she started to get better and we could bring her home. She had to be weaned in the hospital as well as at home.
Imagine taking crack or heroin away from someone who has been doing 24/7 for months.

Well she didn't choose to do drugs, but you get the gist. In any case, I was thinking about it today. She was on very strict doses of Ativan, Methadone and one other drug that I do not remember. We had a calendar we had to follow about cutting back on which drug and on what days. It took us around 2.5 months to get her off everything.

I remember one night she would pick her legs up and throw them back down on the crib ove and over again. I was scared, I though seizure. Nope. It was part of her body becoming accustomed to not having as much drugs. One of them was somewhat of a muscle relaxer.

When I look at her and she smiles. How can a child who has been to hell and back be so happy? She is a very happy girl. When she gets up in the morning she pushes herself up into a sitting position and then she rubs the sleep out of her eyes and will look me directly in my eyes and smile so big. These are the moments I wish I could capture and replay over and over perfectly. It is how I know there is a God.

Doing Everday Stuff

By the time the weekend gets here I am so tired of going. We usually have been to at least one doctors appointment, going back and forth to work, pharmacy. I don't want to go anywhere. The kids have everything they need. But honestly. My grandma and I barely have any groceries left. Yes, I have money to go to the store. I just don't want to. Am I lazy? Probably. It is rainy. I would rather not eat than go to the store. But Grandma needs to eat. I know this is stupid. But here is an average day for me without a doctors appointment for one the kiddies.
Up at 5:30am - Get the kids fed, dressed and myself ready. Sounds easy. But they can't dress or feed themselves at all. Leave the house by 7:10am. Drop the kids at teh Sitter's house around 7:30am. Chat for a few. Head on to work. Get to work a few minutes before 8am. Then I start working. Now intermittently during work I am making phone calls and receiving them from doctors, etc. Plus doing my work. On my lunch I either take a 30 minute lunch to make up time I missed for doctors appointments or a hour. During the time I usually have to pick up something somewhere, diapers, pharmacy, vitmains, go to the post office. Then back to work by 1PM. Work until 5. Out the door to the sitters. By the time I get the kids and get home it is 6pm or a little after. It is time to play with kids, feed, change, bath, clip those every fast growing finger and toe nails. (they grow FAST). They actually go to bed a little later now. So everyone is in bed and asleep by 8pm. Then I need to fix Landon's bottle for the next morning and get all of Isabella's meds pulled up to give her while she is sleeping. Also, before I put the kids to bed I set her feeding pump up with a new bag and pediasure. Cut the tape for the next morning's g tube dressing. So after that is done I usually get online pay bills and chat a bit, during which I try to pick up our cluttered up house, put any medical supplies we got in away (I have a shelf for them). This would be the 10 (24can) cases of pediasure we get a month, g tube supplies, etc. Luckily Grandma does the laundry and dishes. Sometimes there are papers I need to fill out and send in somewhere. So I work on that, too. Then I shower and try to get in bed by 11pm.

Now add a drs appt in that day and we are all worn out. Especially if it is a day that I have scheduled them for all day to avoid being out of work as much as possible.
So now I will mull over whether or not to drive the 3 miles and go to the grocery store and leave the kids here with Grandma for a short time. I REALLY DON'T WANT TO DO IT. I wish someone else could. Maybe I will get some energy going here in a bit.
You can't believe the disarray my house is in. I want to organize and clean so bad. But there is that part of me that is tired of doing and going and just wants to sit.

Isabella's Liver Saga Continues....

Who knew a liver in a 2 year old could be such a, hmm, how can we put it? Unrelenting evil force, I say that with a bit of humor. IzzyB always makes her own path and this is no different.
She is not listed for transplant yet.
We are going to do another scan to see if there have been changes in the "suspicious areas" on her liver. According to MUSC doctors there are changes in her liver consistent with HCC. But it could be left over scarring or benign. There are many could be's. So we will be getting the scan scheduled soon, either at MUSC or GHS. Then if there are changes from the last scan that could be HCC (hepatocellular carcinoma) then we will most likely do a liver biopsy.
Then it gets trickier based on the biopsy results. If they say cancer that opens the door to transplant and other intervention and time buying measures. If it is benign, God willing. Then we will be able to monitor her very closely for a while and just sort of ride it out as long as possible without a transplant. SHE WILL ALWAYS BE VERY HIGH RISK FOR A TRANSPLANT. THAT WILL NEVER GO AWAY.
I feel at peace with the feedback I am getting from the doctors.
Prayers for Isabella and Landon as they continue down this road and are such happy, brace, little soldiers.

We should have answers about Isabella's liver tomorrow

So they met about her today and I expect a phone call tomorrow to let me know if more tests are needed, if we will be monitored closely and not listed or if we will be listed and monitored to closely. These are the main options. I have actually been patient awaiting the answer. I am typically not patient with anyone except the kids. I give everything that is good in me to them.
But faith has given me alot of peace throughout this and we have great doctors working to make the best decision for Isbaella.
MUSC Rocks. Love the hospital. Landon has been there and had heart surgery twice. They are so supportive and thorough with everything they do. I feel privileged to be treated by their awesome staff. They are a team. They work so well with other doctors and keep everyone informed.
I doubt anyone at MUSC Charleston will ever read this. But your Pediatric Doctors, nurses, techs, the whole group rocks and kicks bootie!!

Landon and Isabella's New EI Plans

Well Mr. Landon has made progress!! Yeah, Wahoo! Still not sitting unassisted, but the trunk strength is getting so much better. We are getting closer. We have such great therapists. Go Sally and Steve!! So we kept his goals sort of the same and tweaked a bit. But I was told that he has much more strength when being held in different positions!
Princess will continue strengthing her legs to walk and crawling more normal. She commandos like a little maniac right now.
BEST OF ALL. WE ARE MAKING PROGRESS WITH HER EATING. So she is letting food come into her mouth. That is a good thing!!
With Landon going to Soar in the Fall. I told the therapists and we will hopefully get therapy there and at home. We are going to work his little, bottom out. I think the extra is a good thing.
Isabella will most likely start 4K when that time comes. She is still delayed, but the kid can hold a crayon and has a vocabulary. Even the therapists thought she could mainstream at 4. Go Isabella!!
It was very exciting. We have made progress with our new therapists. I honestly think if we had Sally and Steve from the beginning and well the kids hadn't been so sick, they truly owuld be much further along.
But you live and learn. Sally and Steve rule!
Equipment has been ordered. Can't wait to get Isabella's gait trainer and Landon's activity chair.
Plus, PT will be coming an extra visit during the week. So right now the kids get a total of 6 visits from therapy in the home. Honestly, I AM PROUD OF THAT. It is hard for me to work full time and to get therapy in the home here. There just isn't that much available.
OT - 2 visits working on oral motor with Isabella and all motor with Landon
OT - 1 visit working on motor skills. Fine with Isabella and all with Landon
PT - 2 times per week. Positiioning, standing, crwaling, etc.
EI - 1 time per week. Early intervention is sort of like play therapy. They work with crayons and puzzles.
So I feel great about our therapy plan. We have an awesome group.
I am almost giddy if you can't tell.