Spring break

Well, today is the first day of spring break for my big kids. We were originally going to go to Ikea today but decided against it because basically I have no will power. I'd want one of everything and I wouldn't have had room because the kids would have been in the car. Oh well. I do love Ikea. Also, Ikea will have all new stuff in about 2 months. We can wait that long to get a new TV stand. The one we are currently using is like a decade old and made of particle board. Somehow it has survived many moves.

Instead we went to the mall. We ate at Mickey D"s in the food court. The kids love that place. Yuck, un-food. Then we wandered around. Got Dan a few new shirts. I went to try on bras and ended up getting 5 shirts and no bras. Go figure. If you are a woman you will understand the dilemma of finding a bra that actually fits right. The shirts were just cute and I am in need of a few things to wear this summer since I am a bit smaller than last summer. Did I mention they were cute?

This afternoon while Dan was napping. (His favorite weekend activity.) The kids went out to play. Seth loves going outside. We actually have to be careful because if the back door is left open he can let himself out and is quite the climber. I took lots of pictures. I love it when they are being cute. Seth ate lots of dirt and wore even more of it. And then proceeded to screamed bloody murder when I brought him in the house!

Lost tooth

My internet connection has been on the fritz the last two days. I'll have it for a while, then I can't see the network.... grr.... Old stupid house with thick lead coated walls! (Don't worry, we don't let the kids chew on the walls.)

With all the wonderful responses I've gotten it sounds like the 13th will be a lucky day. Now, if only we could count on the phases of the moon actually affecting pregnant women then we could expect Misty to give birth April 2nd!

In all the craze of scheduling surgery I forgot to share that Simon lost his first tooth. He lost it at school on Monday. He was very excited about it when I picked them up after school. He even had a little certificate and a small box the tooth was in. All so very cute.
Losing teeth is such a right of passage. Before we know it he'll have teeth to big for his mouth just like Hannah! Thankfully we all grow into our teeth. I had such big teeth when I was a kid.

I got a hotel room for us down in Philly that is right across the street from the hospital. I think that will be very convenient. There are all sorts of small things we still have to figure out like do we drive down there, do we take Jeffery up on the offer of his car service, what about if Simon has to stay extra long in the hospital-how does Hannah get to school, do we keep her out, etc. All sorts of things. My selfish mommy plan is to go to Philly and stay till Simon can come home with me since it is only supposed to be for 3-4 days. Seth goes anywhere I go (He still nurses a lot. Yes, he is 13 months and still nurses and I don't plan on weaning him anytime soon. Remember, Ellen = Crunchy granola.) and Hannah can go with grandma Paula for a few days. She loves to be with Paul. I am always amazed at how well my daughter and my little brother get along.

The date is set

Well, if you are superstitious turn away now! Simon's surgery is scheduled for April 13th which happens to be a Friday. This is the first date she offered me and I took it. The doc is out next week. This works out nicely I think. Simon and Hannah have spring break next week so they can spend time being kids and having fun. Then they can enjoy Easter. With the surgery on a Friday Hannah won't have to miss a lot of school to be able to be at the hospital with us. PLUS, I am Misty's doula and she happens to be due on the 1st. That gives her plenty of time to have the baby and I know I can be there. I really wanted to be there for Misty and Lee.

Simon will still have some pre-op stuff to do like getting a CT scan and we go in on the 9th for some pre-admission testing. We won't know what time he goes in on Friday until we call on Thursday night and they'll tell us then.

Waiting

We are still waiting to hear from the lady who does the scheduling... grumble, grumble. She was apparently out sick yesterday. Hopefully she will be all better and in the office today! I am so very impatient. I don't like waiting. I'll let you all know as soon as we do!

Seth and I are off to the park here shortly. The Moms Club (yes, I joined a moms group so I could meet people out here) is having a get together. It's supposed to reach the 70's today! What perfect weather for a outing to the park. Seth just fell asleep though.... hum, I guess I'll have to wake him in a bit.

Mama's little helpers

Yesterday Hannah, Seth and I hung out while Dan took Simon to the TMNT movie. Hannah had no desire to go see a movie about ninja turtles. She actually thought Dan was joking when he told her about the movie coming out. Thankfully Hannah thinks it's fun to help mommy work on quilts! I made us some yummy Chai tea, grabbed some chocolate to gnash on, and we went upstairs to play with fabric! I would personally call that a fantastic Saturday afternoon. Seth just played with everything in the room while I worked on my latest quilt top. Hannah helped me mark some squares so I could make half square triangles. She did about 5 blocks before she got bored and went to get her book of Sudoku puzzles. She still hung out with me in my office though.

I have an exciting day of laundry ahead of me now that Dan is up. How fun is that? Hope everyone is having a lovely weekend.

Oh, we all had a good time at the kids school Friday evening. I helped hand out popcorn, juice, and ice cream sundae's. I think most of the kids there were wiggling to much to actually enjoy the movie. Hopefully after all is said and done the PTO raised some money for the school.

It's decidedly so....

Daniel and I have decided to go to the doctor in Philly. It is important to both of us to minimize the amount of surgery Simon has to have. If we go the less invasive route and not open the dura it should work. Then we'd wait 6 months to see if it did work.... if it didn't, he's back in the OR. I called today to get the surgery scheduled but the assistant who schedules all of his surgeries was out. I should know Monday when it will be. I'll keep everyone posted.

Seth and I went to Misty's after Gymboree. It was very nice to hang out with her. For those of you thinking, hasn't she had that baby yet? No, she is 39 weeks and ready for the baby to come as of yesterday. As my mom puts it- You have to get that uncomfortable to be willing to go through labor to get that baby out! Every week feels like a month at the end of pregnancy and you'll do what ever it takes, no matter how hard, to get it to end!

This evening the big kids have a "movie and ice cream" deal at the school. Silly me said ok when I was asked if could help out. Someday I'll have to learn how to say no. I would have had to stay anyway since the parents aren't allowed to just drop off their kids. It isn't free baby sitting night after all.

Quilt related news- I have an appointment to take Susan's quilt in on Tuesday. I better piece that back this weekend! Of course, I already started cutting the fabric for my next quilt top. I am hoping to knock out a few easy ones. Oh, and Cynthia's fabric showed up yesterday! Hurray! I do love to get pretty fabric in the mail. It's almost better than Christmas... almost.

Vonage ROCKS!

I almost forgot to share with you all how fantastic everyone at Vonage is. When Dan got to work yesterday there was a huge heaping pile of goodies for our family! Apparently without letting Dan know they took up a collection and got stuff for our kids. Not just Simon but Hannah and Seth too. I absolutely love the outpouring of love and support we have received from everyone. We are so very luck. Thank you, thank you. It really helps! (Not the stuff, the support!)

PS- The kids don't know about this yet. We figure we'll wait until closer to the actual surgery to give them all the cool stuff. I don't want them to be greedy and think more is coming because they got quite enough!

Simon

Not much more to report today. We went and saw another doctor and he had a bit different approach to the surgical fix. He doesn't think that the dura should be opened unless there is a rapid increase in the scoliosis curvature. He also would want to get a scan of the brain to rule out any hydrocephalus.

Both agree that the skull should be cut a bit and C1 should be removed. The real debate is over the dura being cut open. If the dura is cut than most likely it will correct the pressure that is causing the syrinx and the the scoliosis but there are risks of complications. If you don't open the dura you should also see the pressure released with lower complications from the actual surgery. What if the curve doesn't get better? What if the syrinx doesn't decrease in size? Does that require more surgery? Do we go a bit more aggressive the first time to try and keep Simon from having multiple surgeries? Do we go more conservatively by not cutting the dura open and wait a bit to see if it works? More than that--one doctor is in Philadelphia, the other in New York.

So, we have a lot to weigh, a lot to decide, and my son's future health depends on us making the best decision we can....

Posting

Some of my wonderful readers have mentioned that they are unable to post because the don't have a blog or google account. I changed it so anyone can post now. I am hoping that people don't abuse this and leave bad comments. If I get a rash of anonymous posts that are negative I'll turn the feature back off. Otherwise, I look forward to more people being able to communicate with us. :)

Quilt stores and bath tubs

Are you wondering what in the world do quilt stores and bath tubs have in common? Nothing really. Seth went in both yesterday...

I was searching on line for some where local that I could get my quilt top quilted that I just finished . Yup, FINISHED! Hurray for me I finished Susan and Ben's quilt top! Phew, it only took a little more than a year to do. Anyway, while looking for the machine quilting service I found out there is a quilt store about 4 miles from me! I was soooo excited. I got dressed and left! It was sadly a very small store but I enjoyed being surrounded by fabric and quilts. I already have fabric for most of the next few quilts I want to make so I won't be making any large purchases there soon... I hope. I actually just ordered some fabric on line for Cynthia's baby quilt. They are opting for "not finding out the sex of the baby" route so I have to be extra creative in the color choice. JK. All you really get to pick from is green and yellow.

Now for the bath tub part. We were all in the bathroom (not sure why the whole family was in the smallest room in the house but we were) and Seth was happily reaching into the tub water and splashing as Simon took his bath. As I was helping Hannah put her earing back in Seth fell head first into the tub fully clothed! The poor kid was quite shocked! I pulled him out immediately so there weren't any concerns of drowning. Just one sopping wet baby. While Dan went to get a nightie to put him in I stripped off all his clothes, rang them out, and plopped Seth back into the tub with Simon. His shoes are still wet...

Hannah did another girl scouts thing today. They handed out water to runners for the St Patrick's day race. The only problem was how chilly it was this morning. As Hannah says, "It was freezing!" I think it was around 30 degrees when I bundled her up in her winter clothes, snow pants and all, and took her to their designated spot along the race. They had fun though. She got hot chocolate, donuts, a t-shirt for participating.

Other than that... things are normal. :)

Hamper rides

What exactly makes riding in the hamper so fun? I figured I should show that things are still fun around here most of the time. I love how excited he gets! He has recently discovered a love for the outside. When you bring him inside he tends to throw a fit. We're going to look into getting a new play structure for the back yard. The one that came with the house is pretty cool but it isn't in great shape and it isn't appropriate for someone as little as Seth.

We need to go get the big kids from school now!

Scared little boy

Well, I found out today just how scared Simon is. I took Seth and Simon to get their blood drawn this afternoon. Seth needed to get checked for lead poisoning because we live in an older home. I insisted that he didn't chew on the walls but they like to be sure. I love how doctors always intervene for our benefit.... I digress.

Simon didn't want to have his blood drawn at all. I am used to him bulking at things he doesn't want to do but seeing as I am mommy he usually does what I want him to do anyway. He was so afraid that he wanted his baby brother to go first. I told him Seth would cry because he is little and doesn't understand. Surprise, Seth cried. Once I got up (I had Seth on my lap) Simon had vanished. He ran into the bathroom to hide. He refused to get in the chair. I tried to talk him into it again. (Really no one wants to get their blood drawn, right?) We had talked in the car about how it is a poke but it wouldn't even hurt as bad as getting an IV. He would not do it. He didn't want to sit on my lap either. I finally had to drag him out of the corner he crawled into, pry his hands off the chair, and hold him while they did it. Mind you I had to hand Seth who was crying to Hannah. It was a horrible experience to say the least. I am utterly at a lose here. How in the world are we going to handle further MRI's and serious surgery?! I tried talking to him on the way how about how I know he is scared but you can be brave at the same time. I hate holding my kid down. I don't know if he even felt his blood being drawn he was so hysterical....

I just had to share my joyous adventure on this beautiful and warm spring like day.

Kateri

Today we took Hannah on a girl scout outing to Kateri. They teach the kids about sugaring. I caught about half of it and I thought it was really neat. (Someone told me it was an hour long but it was really two.) She explained to the kids how you identify a maple tree, how to tap it, why the sap flows out, and how to turn it into syrup and sugar. We got to taste the sap as it came out of the tree. It was actually very watery. I don't quite know what I was expecting since I know the sap has to be boiled down to get it to a thick consistency. I thought it might be sweeter tasting than it was.

Dan and I went in and talked to Simon's teacher today to explain what's going on. Simon went to school last week and told her he was having brain surgery next Wednesday..... ok, so he doesn't quite get it. At least she knows all the correct details now. We don't actually know how long he'll be out of school but it will be at a minimum two weeks. Good thing he is already way ahead of where he needs to be in Kindergarten.

In other news.... Dan's dad had surgery today to replace his defibrillator. The crazy part is it was an out patient operation! How can you operate on someone's heart and send them home the same day! Is it insurance or is the operation that un-invasive? Jim is doing well and will stay the night with Ben and Susan. I am sure he will drive back to Granby tomorrow and be back to work asap. He doesn't seem to slow down.

I got my office all back in order after I sorted through old papers, shredded them, and filed the new ones away. There were paper shreds all over because Seth happily removed them from the trash and relocated them to the other side of the gate trapping him in the office. Hey, it made him happy and I got to finish filing! I am hoping to get some quilting done this week. Those borders still need to be attached on Susan and Ben's quilt top. Someday I'll be able to quilt all day long without interruptions.... by then I'll probably be a grandma!

Mohawk!

Here he is with his Mohawk.....

Thank you!

Thank you all for your wonderful support. I have gotten phone calls, emails and well wishes from so many of you! Thank you. Dan's big boss at work has even offered us his driver if we need rides back and forth from the hospital and to provide us with hot meals. My intention is to stay in a hotel close by until he is ready to come home. Hot food would be a great thing though! I can't believe how fantastic everyone is and how helpful they want to be whether they are close or far away. We are so blessed.The kids were playing around this morning so I took the opportunity to take some pictures. I'll have to get a picture posted in a bit of Simon's new hair cut. Since he'll be getting a pretty bad cut from the surgery we thought we'd indulge him and let him get the mohawk he wanted! I can't really believe I was easily talked into it!

Hope everyone has a wonderful weekend!

I would like to add- Please send good thoughts to Misty right now. Her family is having a hard time with all the things they have going on in their lives.

More info

Susan mentioned this link about Chiari malformations in her reply and it so happens to be one I was going to add today! It has a pictorial at the bottom which is very helpful. The biggest issue we have to weigh is whether or not we like the idea of them cutting open the dura. The doctor we are seeing on March 21st works at Columbia and it sounds like they don't like to open the dura because it can cause complications. But, the syrinx is so big they might need to relieve the pressure. I'd really rather be in Philly because it'd be easier to get to and my mom would be closer but we'll go where we feel Simon will get the best possible care.

Seth has thrown himself full swing into toodlerhood, temper tantrums and all. I really think it is a little early for this so I am going to have to figure out a good way to handle them. It isn't as if he'd understand a time out.

Hannah told me yesterday how unfair it is that Simon is getting all this attention and she has to go to school. Mind you I told Hannah she could come with us yesterday but she didn't want to go because we'd be in the car for so long. I don't think she'll be so envious when he gets done with the surgery.

Surgery for Simon

It looks like surgery is the only way. He has a Chiari Malformation that is causing the syrinx that is causing the scoliosis. The syrinx is huge! It runs the length of his spine. Simon doesn't want to have surgery and I can't blame him. Who would? It sounds like they'll cut out a portion of the skull, remove C1, and cut open the dura. Everyone confused?

We are going to go get another opinion but we just talked with a doctor that has pretty good credentials. He went to John Hopkins.

31

I am officially 31now. Happy Birthday to me! :)

So much has happened since I last posted.....

Hannah and Seth got their hair cut. She finally got it cut off. Hurray. It is very cute. Seth had his first hair cut on Friday while Hannah got hers cut. He was so good! He just sat in the little chair and let her do her thing. I felt like I showed up at Kids Cuts with a baby and left with a little boy. I suppose he won't be a baby much longer.

We had Misty's baby shower on Saturday. It was small since we don't know a lot of people out here but my mom got to come along. It was great to have my mom up here for the weekend. Paul played with Hannah and together they tortured Simon. You know, how kids play. I was very happy to give Misty her quilt. She said she loved it.

Oh, Stella and Greg left Saturday morning. They were planning on leaving Friday but Stella had some yucky stomach bug and felt ill all day on Friday. All in all it was a nice visit. It is always good to get back to normal though.

Busy as usual

Things are crazy busy as usual around here. The in-laws are here until tomorrow or Saturday depending upon the weather. Then my mom will be here this weekend. Yippy. This week I've had to finish up the newsletter for the quilt store in Denver, get my taxes done, pick up our girl scout troops cookies and get them to all the girls.... you know, a typical week for me! Oh, and Misty's baby shower is Saturday and I have to make a cake for her. Phew! Things are crazy! Let's not forget Gymboree, Tae Kwon Do, or my trip to Costco. I really don't know how working moms still get all the other things done! I am always busy.

Hannah and Simon are off with Stella and Greg to see a movie this afternoon. Fine by me! Take 'em! Seth just fell asleep for a nice afternoon nap and I am going to catch up on some of my favorite blogs. I'd rather quilt but the sewing room is still a temporary bedroom.