A Surgery Date!

Posted on May 20th, 2012

It has finally happened! Remember how just a couple days ago I was told end of June. Seems like no one communicates at all betweens the doctors and patients. We literally just got a letter in the mail with a Surgery date.

JUNE 6.  Sagittal craniosynostosis, total cranial reconstruction.  5:30 am arrival and surgery begins at 7:30 am. 3-5 days in hospital recovery.

We are now supposed to make an appointment for a 3 week week prior pre-op appointment. Which would be right now. So hopefully we can get in and everything goes smoothly from here on!

Thanks for the support guys!

Posted in Medical | 2 Comments

Princess Party Cakes

Posted on May 19th, 2012

I somehow forgot in all the hustle and bustle to share one of my favorite recent cake creations. After doing most of our friends little’s birthdays, I had one last request. A full on princess party! I cannot tell you what a little princess I was, so I was extremely excited to make anything PINK PINK PINK!

There was a large amount of cupcakes and mini’s. But my favorite part is the princess cakes themselves. As requested a Belle from Beauty and the Beast.  And Aurora from Sleeping Beauty. Belle is all buttercream with the smallest details of fondant. And Aurora was all fondant. I have to say as I look at them I hate Aurora and love Belle. But that’s just the way they turned out.

I can’t wait to play with this cake pan again. I am dying to make an Ariel cake next. However I see a much different theme in our future! And that is perfectly ok. But if YOU are looking for a princess cake in the future, you know where to find me.

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Mint Chocolate Cupcakes

Posted on May 18th, 2012

Hey all.

cupcakes make everything better. So here is my latest.

Last weekend, last minute I needed some zen therapy. To me that means making my mixer shake across my counter as I make cake and frosting. In the experimenting mood I offered to make some mini’s for a baby shower. Mint Chocolate. Fudge cupcakes dipped in chocolate ganache. Topped with mint green buttercream and 3 mini chocolate chips. Mighty fantastic. And then to make sure I had some for the non-minter’s, I made some always favorite: cookies n’ cream. Coordinating opposite liners for each.

When everything else goes wrong, eat cake.

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Not always the strong one.

Posted on May 16th, 2012

For most of the posts about Sawyer and his Craniosynostosis I have been upbeat and positive. I have learned how strong I am through this tiny child. And have been welcomed into a community of other mom’s who give me strength through their stories. And I have been brought to tears of the strength of one mom in particular. {If you wish to read her story you can find it here. I do recommend going back and reading it from the beginning. She is an incredible woman.} Be warned her journey will bring you to tears many times. And as most days I can put this into the far back corners of my mind, some days are just not that fortunate.

After our last doctors appointment {April 9} we were told CTscan and surgery would be scheduled asap, and everything would be over by May 9th at the latest. I wish they would understand that when you give dates to a stressed and optimistic mom of a 6 month old, she takes them as that. May 9th has come and gone. We finally got the CATscan done late due to poor communication with our insurance company and doctors. And then we waited 4 days. No call, no dates. I called them today to get my answers myself.

I cannot tell you what a frustration it is when my phone call seems to be of no importance to anyone. I was transferred to 4 different women, each not knowing why I had been transferred, and having to explain it over again. By the 4th time, my voice was cracking with tears. I was told I could have a consult appointment on May 21. When I asked to have it sooner I was told I could have one this Thursday if I could bring my CTscan results in with me. But I explained that I indeed did not have them and that they were the ones who had the results. She told me no and transfered me again. I finally got someone to look at his actual file and tell me what was going on. Apparently they have been trying to schedule his surgery {but didn’t think I needed a phone call about it.} The problem is that my Neurosurgeon is going on vacation. We have been moved to end of June. Still without a date.

Please don’t misunderstand me. I understand that everyone deserves a vacation. I am just extremely frustrated with not being told anything, with waiting since February for this surgery, with the stress of dealing with all of this. I feel continually like our doctors do not see us on a human level. They do not understand that as first time parents of a 7 month old baby, we might appreciate knowing what is happening. So somedays are not as strong, and today happens to be one of them. Where dealing with 2 dogs at the vet getting multiple shots was miles easier than one phone call to one doctors office. Where I wish I hadn’t phoned and ruined my morning after having a great time with family.

No some of those days, its easier to just curl up and have a good cry. Let your baby have an extra nap, an extra bottle because who cares if his schedule is was off today. Have a couple vents on the phone {thanks dad.} And then have a couple deep breaths, read the blog posts from reflections on a journey and remember: its nothing compared to some. Its crappy, and its not going to change. So deal with it. And then have another cry. Life goes on.

Posted in Medical | 11 Comments

Happy Mothers Day

Posted on May 13th, 2012

We had a wonderful Saturday celebrating Mothers Day with all the family here. Pretty much perfect. And tomorrow I won’t be posting because hopefully we’re having just as awesome of a day. (wink wink!) So for all the Mothers in my life, Thank you. For just being you. I know I wouldn’t be the same without you. And I wouldn’t be the same without this little boy either.

Happy Mothers Day.

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A CATscan

Posted on May 10th, 2012

Today was the much anticipated CATscan. I feel like it’s literally been an eternity since finding out about craniosynostosis. So it feels so good to finally be doing something about it. Our day started at 5 am, I stood over the crib of a perfect sleeping baby. Everything in the house was quiet and peaceful. I pulled our little guy out of bed to have an extra bottle. Not needing it and wondering why on earth I was doing it, he barely finished 4 ounces. But it was enough to hold him over this morning. Sawyer wasn’t allowed to eat anything after 6am, because of the sedation.

That’s where the peaceful part of the morning ended. It always seems fitting on your most stressful days, what can go wrong does go wrong. We were late leaving the house, the gas light turned on as soon as we hit the freeway, hit as much traffic as possible. Made it just in time, but couldn’t find the building with no name on it. Just not the way I envisioned it, but it never is.

And maybe that’s why I got the sweetest staff and nurses. It helped that Sawyer was wearing his custom mini scrubs. (Thank you Denise, they are too adorable!) The nurses couldn’t get enough of him. There is no better feeling for a mom in a hospital with a baby, than having nurses who understand your losing your mind.

It was a very fast procedure. They gave him a liquid sedative orally by a syringe. He was asleep within minutes. By the time they came back to check on him he was one limp baby. We were escorted to another room where the CT machine was. I was allowed to stay by his side the entire time. I watched them slide my little baby’s head into a giant hollow orb. The machine clicked on and started to whirl around that tiny little baby. It was over in less than 5 minutes. He was so sedated, That when I got to pick him back up I had to be extremely careful with his neck and limbs. We sat together for the next hour. They had a glider for us to sit in, and we just sat and cuddled. He was so peaceful.

After an hour we started to wake him, changing him, laying him on the bed, and rubbing his face. Those little eyelids were so heavy. He woke just enough to drink a small bottle and allow us to leave. He’s been tired most of the morning, and is just waking up now. He’s my little trouper, and we are done another step of this process. Thank you to everyone for all the continued support. I am so touched every time we receive a message. Sometimes they are what make the day a little brighter. Truly thank you, from both Brandon and I. And hopefully we’ll have a surgery date soon!

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Auntie Kimmy visits

Posted on May 9th, 2012

As you can usually tell, I am pretty good about posting, unless someone is visiting. I have said it in the past. Its better to live in those moments that be blogging. So here is the breakdown of our Auntie Kimmy’s week!

We got to go to Gymboree, since Kimmy is a Gymboree teacher! And even though Sawyer is not completely sure about Gymboree, we managed to go three times this week! We went to a trial class. And Sawyer hated it! Haha I think a little overwhelming. But he did love watching the other kids! And then we went to two drop in free play times. And it was a bit better since he had the whole place to himself!

We went to all the baby consignment stores and Auntie Kimmy cleared out all their good items. We were part of a garage sale. We spent a day at the pool. We went to a movie. We hosted a mommy and me play date. We got to meet Sawyers cousin little braxton. (though from the ultrasound, he’s going to be very different than sawyer in one big way! He was about as camera shy as you can be haha!) Kimmy babysat for a night out for mommy and daddy. And we took a whole set of maternity pictures! Yay! I cant wait to get them all up! (though I am still trying to get her to let me take a few more!)

It was a great week, and a fun visit. I am sure Sawyer will miss waking up to Auntie Kimmy as much as I will miss not waking up to either of them till much later in the morning!

And for those of you who didn’t catch it, Sawyers CATscan will be thursday morning at 8am. He will be in light sedation (I’m not 100% sure what that means.) Hopefully it will be a quick appointment, and we can move on to the surgery date as soon as possible!

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Cranio Care Bears Auction.

Posted on May 2nd, 2012

Hey guys I am just sharing this because the more people who vote, the higher the bid,s the better their charity does!

You have heard me mention Cranio Care Bears before. I’ve brought it up a couple times in past medical posts. It was started by two mom’s who’s son’s underwent surgery for craniosynostosis. They use donated items and money to put together care packages for children with craniosynostosis. I also have spent a fair amount of time reading the success stories on their website. They are extremely sweet ladies with a very worthy cause!

The next 2 weeks on their facebook page they are having an online silent auction. Place your bid, and see if you win some of the cool prizes. Or if you want to donate your own items you can message them a picture and starting bid+shippping prices. All the money goes directly to the care packages, and its tax deductible!

I just wanted to share it since we have a special place in our hearts for this cause!

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First Appointment.

Posted on May 1st, 2012

After much frustration yesterday. And maybe one not so nice message left on the answering machine, Brandon finally got a call back. We have an appointment for Sawyers CATscan. May 11th. Over 30 days from the last appointment. Which means we go back for another consultation before the surgery. Which will not be scheduled until after this test now.

Its at 8 am and he is not allowed to eat 2 hrs prior to the appointment. So I will get up at 5:30 to feed him a bottle to last him into the CATscan. Hopefully it will be on time. They will be sedating him, and it is a clinic that regularly see’s babies. (side not: we cannot get the CT done at the hospital because it would not be covered by our insurance. I will never ever begin to understand the american health care system and why anyone thinks its ok for a first world country.) So we have one date. One step closer.

As you can tell this isn’t my usual fluffy positive type of a post. Its just been that kind of a day. Which we are all allowed, but especially on any day we deal with healthcare. Also it could be because I’m posting this at 1 am. (sometimes its just easier to stay up and feed him, than sleep for an hour, yell at the hubby to feed him, realize he’s just as tired, finally get up, sleep in the glider while feeding him and somehow make it back to the bed again.)

And on that note, thank you Brandon for waking up with Sawyer and letting me sleep in 2 days in a row. Thank you, thank you, thank you! It’s been magical. Enjoy it today!

Posted in Medical | 2 Comments

Scrapping it

Posted on April 27th, 2012

I have had creative block when it comes to scrapbooking lately. First its just hard to find the time to be by myself, not tired, nothing else to do, and feel inspired. Secondly I just can’t seem to flow or feel creative enough. And third is that my scrapbooking room looks like a tornado literally destroyed it. It’s a mix of all my scrapping stuff, sewing stuff, baby storage, Brandon’s gear, Brandon’s mini studio. Basically anything and everything is in there.

But somewhere in there I found some time this week where Sawyer was sleeping, and I wasn’t. And decided my scrapbooking calendar was 3 months behind, and I should probably do something about that. So I sat on my bedroom floor and went to it. Two simple layouts. Not feeling inspired yourself? When I am having days like that I use other layouts as inspiration. Both these came from a scrapbook trends magazine. Similar layouts, completely different themes and color, but just enough of a start to my own layout.Don’t feel bad about using other work as inspiration. Your never going to have all the exact same stuff, so it will have your own spin on it anyways. And there is never completely original idea’s, everyone feels inspired from something. In fact if my stuff inspires others I would feel honored and excited about it! (If you do ever copycat me I would love to see it! email me at lissables@gmail.com!) I love having some color and pictures on my calendar finally. So I will share with you March and April. And maybe I get January and May done this weekend!

And something I am still currently working on! I will share this project and some other pinterest inspired projects around my house later this week! Be sure to check back with me!

Thanks for following me at lissables!

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