Week 2-here we go

This week, things have settled down a lot. I am still one thousand percent sure that we could never survive long term in an apt in the city, but we are making the best of it. There is a nice wildlife refuge close and we have taken the kids walking many nights. I survived taking them to Kmart alone-SUCCESS!

Homeschool officially started a bit tonight. I tested Easton's spelling level and (drum roll and trumpets please), he tested at a 5th grade 2nd month level. We knew he would test well but had no idea he would test that well. He is going to be part of an autism study (no, he isn't autistic) at CHOP. They needed non-autistic children to take part (and get paid) and part of it is an IQ test. Adam and I are really looking forward to seeing those results. Adam swears Easton is smarter than some of the adults he knows-hahahha. We have become CHOP's research family. Anytime there is a research project where they need a little child, they come find us because they know we 1) have lots of little ones and 2) will say yes. The new baby is already enrolled in a research project about how the brain develops between birth and age 3. In exchange, we get money to travel up to CHOP (which we will combine with Weston's monthly visits after transplant) and they pay for our hotel and food.

Yesterday, Adam and I took the kids to a craft festival/farmers market in a neighboring town and then to Linvilla Orchards for peach and apple picking. We are trying to find fun things in the city for the kids to enjoy before the weather gets too cold. Weston has been busy making his list of things he wants to do when he leaves the hospital. His number 1 thing is go to the beach and number 2 is go to a fair and ride a ferris wheel.

On the transplant front, I have no news to report. We don't get to find out everytime they get a call about a possible transplant match but we do know that they have had a match for a heart a few weeks ago and a set of lungs about a month ago. Weston needs the heart and lungs to come from the same donor so we will keep praying. Hearing that he got some offers made me feel better. It made me feel like we aren't just sitting around in the CICU for nothing.

1 week here

I meant to post some last week but the internet at the hospital hates most websites that are useful including blogger, facebook messenger, and a few very necessary kids clothing sites. This has been a rough week for everyone involved. The kids had never visited an apartment/townhouse/or anything of the sort before so they keep calling our apartment a hotel. They have no concept of neighbors being so close and talk to every single person that walks by our apartment. If they are inside, they stand at the window and wave. They are the 5 man welcome crew.

Weston is doing well but it hurts his feelings when all of the kids visit and then they all leave together so we are limiting group visits to twice a week. We are still figuring out an extra few days for Easton to go to the hospital. Adam and I are trading out more so that has helped tremendously. He has gotten to go on a walk around the CICU and take a real bath so those things lifted his spirits!

There is a really nice town close to our apartment called Media. I joke with Adam that it is where all of the sane people in Philadelphia live because it is a nice size town with lots of shops but nothing overwhelming-EXCEPT the 2, 2 story Targets that are just amazing. The YMCA there offers a homeschool group, dance classes for the girls, karate and swimming for the boys, and all sorts of arts and cooking. Because they work closely with CHOP, we will be able to enroll the kids in some of the activities for free. We also found Easton a Cub Scout group in Media. I hope this will help him make some friends.

Speaking of school, we will begin formal homeschool next week. We are doing things a bit differently this year because of our situation here in Philly. For Language, Phonics, and Bible, we enrolled Easton in Abeka Academy. They video stream and online teacher teaching. We are also going to use a few new multi-age texts. I am hoping to get a few years out of these books and involve the other kids more. I am going to use Spelling Power for Spelling. For Science, we will use Apologia. I really love Apologia. The books are bright and full of beautiful pictures. I got the lapbook cd to go with it so I am hoping for Easton and Weston to make more lapbooks this year. Lapbooks are 1 thing the kids really love. We are going to try Story of the World again for History. Now that we have done a year of homeschooling, I don't feel nearly as overwhelmed so I think Story of the World will be a good fit. The 2nd week, Easton will be making a mummy out of a whole chicken. I believe Adam will be helping more with that. We are using A Reason for Handwriting for printing and I believe Easton will start cursive this year with Abeka. Easton's Abeka won't arrive until later this week so I will know more then. For Math, we reluctantly bought Saxon again. Saxon is a great, hands on program but you constantly repeat what you just learned. It made Easton very frustrated but he loved the hands on elements.

We also ordered the K4 curriculum from Abeka Academy. Adam and I struggled with trying to decide whether to start Weston in true Kindergarten or have him take another year of preschool. Weston is very smart but with everything going on, I think another year of preschool will be great. There is no need to make him grow up faster than he already is. His birthday is in September so it is no big deal to do another year of preschool. I have read lots of studies saying that boys, especially, benefit from starting school a little later.

As much as I hate to admit it, there are a few things I love about Philadelphia. The very best thing about Philly is the fruit cart. Don't worry-I was scared at first too. Who eats fruit out of a tiny cart??? Well, the answer is, everyone who knows where to get good, cheap fruit! I am going to post a pic next time of how much fruit you get for 4 dollars. It is amazing. You could not buy fruit and cut it up for less than you can buy it from the fruit cart. My 2nd favorite thing is Trader Joes. LOVE LOVE LOVE this store. 19 cents a pound for bananas EVERYDAY. Great, great, great. And, last but not least, now that we have kind of settled, I have found some great homeschooling oppoortunities for Easton. This year may end up consisting of lots of unschooling because of all of the fun things we have found for him. I hope you all have a blessed Sunday!

We made it after all

I flew home last Monday thinking it would be a quick trip. I would clean like crazy, pack like no tomorrow, and leave out Thursday. I have never worked so hard in all of my life. This is no understatement. I worked from 6am until at least midnight every single night. The kids were so excited to see me. I couldn't possibly think about them spending the night elsewhere after they were so excited to be home. We did a bit of visiting while we were in (you try telling great grandparents that you are home for what is probably a very long time and you aren't going to visit). On Wednesday, I called Adam to tell him we weren't going to make it on Thursday. I still had way too much to do. So, Thursday, I went to take the car to Sears to get tires and the kids and I were going to get cupcakes. Adam jumped out from behind one of those bathroom model things. I was so glad to see him!

We left Friday around noon-after a stop through Pals. The kids did really great on the ride up. Avery was the only very unhappy camper but hopefully, the ride back home will be better since she won't be backwards after she turns 1. We got to the apartment around 1am and the kids were overwhelmed. They were nervous. It was probably the first apartment they had ever been in. The girls and Sutton shared a bed, Easton slept on the couch, and Avery slept on a blanket in the floor (she was NONE too pleased with her sleeping place but we had forgot her Pack N Play).

Today, we brought them to the hospital to visit Weston. He was overjoyed to see them and they were thrilled to see him. Avery was, by far, the most excited. They left right before lunch. That will be our routine for awhile with Adam and I trading off. It isn't ideal but it is SO SO SO nice to have everyone in the same city.

Did I mention how much the littles have grown? Avery is so big and about to walk anytime. She isn't talking yet but when she went for her 9 month apt (she is 10 months but we have been busy!), she has an inverted ear drum. We are supposed to see ENT here in Philly next week to see about putting in tubes. Sutton is talking up a storm! He has turned into a big kid saying sentences and singing songs. Emery is saying more too and has become very opinionated. We will be looking for a speech therapist for her up this way as well. Abby has become a young lady. She lost that baby look and looks like a big girl.

So, that is about it. We still have to figure out grocery shopping and all of that. Grocery stores here are a lot different than back home. Wegmans

Meet Us

Here is the link to my friend, Nicole's Blog She took our Easter pictures and they are just amazing. I am always amazed to see picts of the kids. They look so sweet, so clean, so amazing. Not that they aren't amazing usually, but our everyday life doesn't look quite so bright and vivid. Sometimes, it is easy to get caught up in everyday.

Yesterday, I took the 2 Little's (who are we kidding, all of the kids are littles)-I guess I mean the 2 littlest-to Walmart. Sutton got the big boy job of holding onto the buggy. I know most people don't expect their youngsters to hold onto the buggy but because we need to be able to sit Avery in the buggy seat, he will be booted to walking. I used to try to put some kids in those weird 2 seater carts where the kids are kind of across from each other. Goodness gracious-no one with 2 children designed those. You never want kids facing across from each other-there is to much temptation to pull hair, spit, bite, kick, etc. We have a few places with better buggies for multiple kids but I gave up on that long ago. Our new philosphy is you will learn to walk and hold on-no matter how old (or young) you are. I would also like to add that he held onto the buggy for over an hour! We walked down all of the aisles and even visited the pain counter 3 times. That's a long way for tiny legs! Here is a pic-he looks so big!

Raising Olives

Sometimes, I find a great blog and I love reading it and then I completely forget about it-only to uncover it when I am searching for something completely random. Raising Olives is one of those great big family, Christian oriented blogs. So, as everyone knows, I have been struggling with my problems. I really thought I was losing my mind the other day-thankfully, I prayed and God has helped me find understanding and peace to things I never thought could happen. One thing we have struggled with recently was why God brought our niece into our lives to entrust us with her care. Let me further explain, we jump through rings of fire to keep her with us and safe. This often feels like we are beating our head against a wall. We got some wonderful news tonight and if all goes well, I will have some great news to share soon. That lifted my spirits in ways I cannot even imagine.

After reading this Raising Olives article I feel even more blessed that 5 children call me mom and 1 calls me Julie-and she is just like the rest and we love her the same. I feel blessed that we have a large family in a time where large families aren't the norm. Maybe, I even kind of like how large families freak some people out so we weed through people really quickly.

I love their laughs. Tonight, at Lowes, 5 o the 6 got to ride on the flat cart with the dryer and they just laughed and laughed. I love that they love each other and take good care of one another. I love that they wake up everyday giving 1 million percent. I love it. I could just bottle it up.

The new memberzzzzzzzzz of our family

Last year, Adam became interested in getting bees. At first, I said no because I was worried the kids would get stung. Then, we moved here and there was plenty of room for the kids and the bees. The more I read about honey helping people with seasonal allergies, the more excited I am about the newest and smallest Keeton'zzzzzz. The best part is that the bees do their thing without us having to feed or water them. Adam said we might have to give them a little sugar water during the spring but they are pretty self sufficient (my fav kind of animals).

The rest of the animals are doing good. Elvis is the best dog we have ever had. He is sweet and loving and has recently moved from his kennel to his new spot to sleep, the porch. Blue still isn't crazy about us but he enjoys munching on all of the overgrowth. He is also pretty low maintenance but he needs a friend or 2 to help him eat everything. The chickens are all good and the rabbits are pretty oblivious to all of us.

Adam has decided, after much thought, not to do a huge garden this year. He said this but I don't believe him at all (noting hundreds of tomato plants that have now moved from my living room to the back porch). Gardening is his therapy and he loves it. I think he just struggles with the time factor-in reality we may not be here a lot over the summer and if he wants to do it, he wants to do it right. We do have some wonderful raspberry vines that are growing. I am excited because the kids love berries and raspberries the store are not cheap. We have wild blackberries growing down the path but plan on adding more in the fall.

There is a lot no one tells you

There is a lot no one tells you about having kids but there is absolutely nothing anyone has to say about having a critically ill child. Today, as I was having my morning meltdown because I had been up a ton of times, it dawned on me that no one talks about this part of parenting. Adam and I have been going through a few growing pains this year. No, we aren't getting a divorce but we are working through many things that most couples never have to face-the constantly stressful health of one of our children. There is just so much that no one ever tells us. Let me back track-when Weston was first diagnosed, a social worker from the hospital came to tell us that something like 90 percent of all marriages that involve an ill child fail. I thought to myself, that has to be a mistake. Who better to go down this terrible road then your partner? Well, after 4 years of this battle, I have come to realize that it is probably not so much the partner-as the stress. First, you never sleep. Whether it is because you are giving meds around the clock, dealing with episodes, talking to doctors, etc-you never sleep. You get even less sleep when your child is in the hospital. You have to sleep with one eye open because incompentent people can slip in and jab your poor baby with a needle before you can wake up fully (this has happened to Weston at 2 diff hospitals). So, now that you all know why Adam and I look so rough, we can move on. In our situation, Adam works and I stay home with the kids. I love it and he has blessed me with being able to stay home. That being said, I get frustrated when (usually kind of irrationally) I think he should take off to come be with me at a doctors visit (he comes to the really impt ones but skips little things so he can save vacation)-not vacation for a real vacation, mind you, but saving vacation so we can travel back to a hospital. This creates tension. Not because I don't think Adam loves me or whatever, but because it is stressful being the one always at the doctor appointments relaying info to him. Have you ever taken 6 children to the cardiologist for a 2 hour appointment? if not, it is a real treat. It isn't even that the kids are bad, I am just in such a zone of trying to remember every word she says about Weston. While we are at it, scratch all vacations off your list. Those don't exist-at least not a relaxing trip anyways. Even, if he did have a day left, we would just take the kids with us. Add the stress of giving medications-serious, life altering, medications around the clock. One of which is carcenogic the other of which costs 55,000 dollars. The last time we came home from Philly, I was convinced that I had left all of his meds in the RMD House. I tore the car apart in the driveway searching for his meds that I had already carefully placed into the cabinet inside of our house. Not a good mommy moment as I was hysterically crying. Oh and about that, yeah, I cry a lot. His doctors tell us that many of the parents take sleep aids and it makes me panic more that I might not wake up for something happening to him. No thanks. I worry constantly about taking him to a bad ER. Go ahead and throw those health notebooks (you know, the ones that the nurse at the hospital said to start for each of our kids in case we needed to tell people about health history) away because the doctors ask YOU (yes, mainly mom but sometimes dad) questions and YOU need to be able to answer them on the spot. There is no time to thumb through papers-you need to be prepared and they fire questions at you like no tomorrow. I need to know his weight and height at all times, meds/doses/strengths, pharmacist name, any surgeries, surgeons names, doctores names and phone numbers, health history-this really goes on and on. And you need to know it on the spot-there is no time to think.

Friends-well, those are few and far between. Real friends anyways. What the heck do you tell people when they ask how he is doing? We usally say "God has blessed him with another day" as I fight back tears. Then, people smile and wander off awkwardly. We understand. It is also hard for us to get together with other people. In the winter, we hibernated. Although I told people prior that I wouldn't see them until Easter, they seemed stunned that we followed through. No one else understands not wanting your sick 4 year old to be infested with whatever thing 10 people are posting about on facebook. No thank you, we will stay home. We really seem to have offended people with this, this winter and if we offended you, I am not sorry. We did everything we could to keep him healthy.

A friend told me the other day about how, now that they are done having kids, they are going to plan a big vacation without their kids to work on them. I thought to myself, we won't ever have that time to do that-both the vacation thing and the completely working on us. Weston's health is our priority 100 percent of everyday. I pray nightly for his wife because she is going to have to be a strong woman-not only to put up with my insanity but to take on having an ill husband. We took a marriage class a few months ago and it was nice-but the entire time, I was busy making notes in my marriage handbook to not forget some medication for Weston. I was a nervous wreck.

Please don't get me wrong, we love Weston and we do not fault him at all for any of this. I just needed to vent. Get all of my thoughts in one place. God has blessed us with a perfect little fellow and gave him a special heart and lungs so that he can teach the world about perservance and strength.