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If you ever need a pick me up the internet is sure to provide you with an inspiration story. I came across one just this week. How touching would it be to have a kid have his dream come true. Especially a little one in the hospital. Im so happy to see that there is still some magic in the world, this guy is truly a hero. Make sure you read the full story. It melted my heart.
There is nothing but frustrating waiting, and dealing with never ending insurance approvals and referrals. So while we have a whole weekend to nothing but wait, I thought I would share something different today. This should have been posted a week ago but something else kinda took the lead on here…
Red Velvet. For some people that alone will make them read the rest of the post. I find you can like vanilla or chocolate but when a person prefers red velvet, they don’t like it, they love it. So today I have for you: Red Velvet Brownies! I got the recipe from {da da da da} Pinterest! I think this is the first recipe that Ive actually made from pinterest. And it sure didn’t disappoint. WOW is all I can say.
So here is the link to the most delicious Red Velvet Brownies! They had the absolute perfect amount of light crispiness on top, gooeyness in the middle and only lasted 2 days in our house. They’re deadly is what I am saying. But now you have the recipe. For if your having an off week and are like me in an “eating your feelings kind of way.”
ENJOY!
I’m sad to say I have nothing new to update everyone on today. We got a call on Saturday telling us our insurance had approved our next visit with a pediatric plastic surgeon. We were to call on Monday for an appointment. Here is where is gets annoying on our end. Since most of my readers are from Canada you are only given a small window into American Healthcare. I’ll admit it has its ups and downs. If you have me on facebook you know I’m a complainer of the system. Its not to say I haven’t enjoyed almost all and any of the nursing staff and doctors we’ve encountered this last year. I certainly never would have been able to go in demanding a C-section in Canada and it’s what made our birth story that much easier on all of us. Finding out later that we would have never been able to have Sawyer naturally and that I made that call and it was right. Having said all that though, there is still some very frustrating flaws in the system.
I wont even argue my big issues today, but on Monday when I was trying to make one single appointment I reached another breaking point. I was turned down without a written referral. I am not used to this expectation that I can only see a doctor if I have been referred and approved by insurance. Of course we had one but this would be about the 4th time it seems to get lost in fax land. I was told I would need to go all the way back to my pediatrician for it. Back in the wrong direction 3 doctors. I didn’t think so. I tried calling the previous doctor, our neurosurgeon, but couldn’t get through. Then I called our pediatricians line just in case. It was my lucky day and I got a woman who clearly didn’t care about us, couldn’t speak English and was losing my mind when I had to repeat our phone number 50 times and respell Sawyers name a dozen more. No its Sawyer with an S like Saw. NOT FAWYER. This is not my entry in my house Im calling you about. I ended up hanging up on her because it didn’t get anywhere . But she must have left a message for my pediatrician, so they called me even more confused since they haven’t been a part of this since Feb 9th.
We are now waiting because Brandon took over after one too many Alissa tears, and finally got through to the neurosurgeons office. They faxed that dang referral over again, and we were told to call them in 15 minutes. Tick tock tick tock. Nothing. We called and they told us we would be called when they scheduled an appointment for us. I can be calm and strong about this diagnoses and pending surgery but I just want to be dealt with as a new mother dealing with some scary news. Don’t leave me waiting in the dark for weeks waiting for appointments. Whats it going to be like booking the actual surgery!
We are still doing fine as a family. I am extremely lucky to be able to stay at home with my son, and even more fortunate that Brandon works from home as well. So we have more family time that anyone I know. And for that I will be forever thankful. Brandon is my rock and without him I would still be crying and yelling at health care reps from Monday. So we’ll just continue to wait again. I’m getting a lot of practice in that end. Hopefully I will be able to update everyone with real news soon. I just needed a little vent today.
Now I’ve got to prepare for doubling my baby count in the house! Sawyers little friend Claire is coming over for the afternoon while her Mommy and Daddy have some grown up time. Life is too short to be upset all the time. So we’re going to enjoy our double the fun afternoon. And then Sawyer is even more lucky because both Grandma’s couldn’t stay away any longer so Brandon’s mom is in town this week and the day she flies home, my mom gets here for a week! Last night Sawyer had an entire nap in GB’s arms. I’m not sure which one of them loved it more. He is truly loved.
ps. I think ever since they told me they were going to shave his head, his hair has started to grown twice as fast. ???
Im sure he knew he was loved. But no one can quite understand that amount until someone passes too early. All day on facebook I have seen status updates from all different circles and grades about what an amazing teacher he was. How many lives he changed and how he will be greatly missed. I can say there has never been a teacher quite unique. Sure some other teachers had elaborately decorated classrooms, maybe another has had coffee for watching the news. But rules that you were to bring treats for the whole class the next day if you were late. That was all his own. He even allowed you to skip class as long as you came to him first to get the days work. I wouldn’t have believed it if I hadn’t done it myself on a particular bad day. Leaving the last ten minutes of class open so you could choose to do the day’s homework, or sit and talk with your friends. Little things that don’t sound like much, but changed my entire look at school. After my first class with him I brought my grades up, not only his class but all my classes. Just barely missing graduating with honors. All because of his positive teaching style. And I was not alone in that. He inspired so many. And that is why when I got a message about his passing this afternoon I cried for wonderful man the world had just lost.
This past December I got to write him a little note to tell him these things. My high school had a donation set up for his family and along with that you could include a small letter to be delivered to him later that month. I was there on one of the last days, so I saw that it was getting to be a full box. Such a loved teacher. I wish I could have seen him again in person since its been 4 years since we last talked. But at least I did get to say goodbye in some way. And I am so grateful for that.
Today my heart is with his family as they grieve the amazing husband and father we all know he was. Truly another bright light gone too soon. People this week keep telling me they are amazed at how strong I am being about Sawyers Diagnosis. And again I have to say, it is because it could be so much worse. I get to love this little one for many years to come. And while we will have one bad month, that is nothing compared to what Mr. Hollings family will deal with for the years ahead. You all have asked if there is anything that you can do. Love the ones in your life every day. Too often we let the little things bother us and lose precious time with loved ones. Let things go and hug someone close tonight. For those who can’t anymore.
Thank you for being the most inspirational teacher I ever had. You truly will be missed by many.
Today was the much anticipated neurosurgeon appointment. I am still being overwhelmed by messages of well wishes every day, and surprised at how many people remembered today was an important day for us. Our appointment happened to be at 2:30 in the afternoon. I felt like the whole morning dragged by. And after finally arriving at yet another new medical building, we got to fill out 30 pages of health information. Someone needs to come up with a baby package so I dont need to check the no column in every category possible. This is the beginning of my health care rant and I’ll end it there for now, though I could probably go on for pages and pages.
Our doctors PA examined Sawyer first, he was in a great mood and it was nice to see her want to entertain him with her Id cards. The surgeon followed soon after. Her first words out of her mouth was what a little adorable red head in room 4 as she barely opened the door before someone in the hallway asked her something. She did a very brief visual and physical exam and confirmed the diagnosis. Surgery is mandatory. I handled it much better today. Because I went in knowing the outcome. This time I was able to ask a million and one questions and she patiently answered each and every one. And offered to sit down with us again if we had any between now and the surgery. It will be in the early May time frame. Before we can schedule the surgery we have to see a pediatric plastic surgeon. I’m going to start losing track of how many Dr.’s we are seeing. And even though we have health care we have to wait for the appointment to be approved by our plan. {I’ll never understand American health care.} So that should be somewhere in a 2 week time frame. He will then make the call on whether we still need a CATscan or just go straight to surgery. At least we have confirmed there will be no need for an MRI anymore. Wonderful news to me! One less sedation and Hospital visit.
However we will be spending some time in a Hospital. The surgery will take place at one of the teaching hospitals in Las Vegas. 2 surgeons, 2 PA’s, an anesthesiologist, and at least one resident. {Just so you know in my head I’m picturing the cast of Grey’s anatomy when I think of surgery. I mean McDreamy and McSteamy would be doing this particular surgery. If only that were true!} At least I can still find humor in tough experiences. We will have one longest morning of my entire life while we wait for this little baby to be operated on. She told us to expect a 7:30am appointment time and hopefully be able to see him again post op at Noon. 4 1/2 hours. I don’t even know how I will pass 16200 seconds that each feel like their own hour.
I’m going to go into some detail about the surgery now, so be warned to skip this paragraph if your queasy. MOM JUST SKIP IT! Seriously. Ive talked to 2 women in Canada who have gone through the same surgery. However today we discovered its not at all the same surgery in a different country. They will begin by making a zig zag incision from ear to ear. They do this for hair growth to remain as normal as possible, as it will never grow again on the scar. Thus they are going to shave off all that beautiful red baby hair 🙁 Here’s where it gets graphic. {MOM STOP READING.} They will peel his entire scalp back to his eyebrows and neck. Now you see the need for the plastic surgeon. They will then take every piece of the skull apart, and re-piece it back together like a mismatched puzzle. They do this to reshape the head since craniosynostosis creates head shapes that are long and narrow.Which later in life can lead to simple problems like never having a helmet fit, so no bike riding or sports. Because they do this in surgery there will be no need for him to wear a helmet in recovery, which is a big distinction from the Canadian surgery. Although it is more intense, so we will likely have a longer recovery.
We will spend a minimum of 4 days in the Hospital. They will also keep him sedated longer than the Canadian procedure. He will have a hard recovery. His face will swell and bruise. His eyes will be swollen shut for the first couple days. I thankfully have seen first hand pictures, so I know what we are heading into. It is perhaps why I am so calm right now. These days are nothing compared to what that week will be. And again I am aware that this is nothing in the long run compared to what some families are going through with younger babies and children. Much like the quote :”If we all threw our problems into a pile and saw everyone else’s, we’d grab ours back.” Its so true.
We are extremely lucky to have such a strong support system. Our family here has been very caring and we will be seeing both grandma’s in the next 2 weeks to give this little boy some love while we wait. Which will definitely help pass some time while waiting. And I truly appreciate all the loving messages, cards and tokens of Love. Tulips long distance from Canada, that brightened the day and reminded me of a man who always saw the sunshine in gloomy days. A care package still in route. And last weekend Sawyer received a special little surgeon bear from the family I used to work for. It came with a card from their little boy who was born the day after Sawyer. I cried through the simple well wished card that ended with “I am with you every step of the way Buddy, Love Jack” From those huge gestures to every little simple message that just said we’re here and we send love, Ive never experienced such a grateful emotion. I can’t describe how lucky I feel, that even though we will go through some crappy days ahead, he will be ok, and he is ever so loved. Thank you for loving our precious little life.
Again I will be updating this as we go through this process. So read along if you want to but dont feel obligated! I just like to share my life like an open book and this is going to be one hell of a chapter.
Yesterday we had a perfect birthday celebration. We didn’t spend any time thinking about today’s looming neurosurgeon appointment. I had stayed up late the night before and banished Brandon to the bedroom with Sawyer. Where apparently it was extremely boring. But it was all worth it! I baked him an extra special vanilla sandwich cake with peanut butter butter cream frosting! YUM indeed. I half contemplated eating the entire thing the night before and starting over the next day. Good thing I had some red velvet brownies to eat instead. (More on those later this week!) He got some awesome presents which included the birthday button he voluntarily wore the entire day. Even got him free packing peanuts at the post office. And Sawyer was especially kind with his present. We ended up throwing out our first outfit that just wasn’t worth washing, if you know what I mean;)
I decorated the kitchen with streamers and banners and balloons. And set the table up with presents, the cake and pictures of us through the last year or so. I also made a birthday check list for him. (learning the hard way to always save a photoshop project before your computer dies unexpectedly and you lose an hour of work {inserts extremely sad face here}) It had 2 choices for each part of the day, and he could choose and make his own perfect day. He picked pancakes at home over breakfast out. 21 Jumpstreet and candy, over shopping and a nap. Our favorite hole in the wall restaurant over applebee’s and laser tag. And we finished the night off picking Sawyer up and watching the girl with the dragon tattoo specials.
We didnt even eat the birthday cake because we had already eaten so much Candy at the movie. (which was awesome, but beware they drop the f bomb quite a fair bit, but still hilarious movie.) All in all a good birthday I would say!
I will be updating this as soon as possible after our doctor’s appointment this afternoon. Thank you to all of you who continue to send us well wishes. We appreciate all the love.
I dont even know how to start this post. When I wrote about Sawyers Diagnoses, it was more of a comfort for me to get it out. I never expected the amount of support we were given. We both come from close families, but its always nice to know that love is strong. We’ve had close friends, old friends, and friends we haven’t talked to in years reach out. In fact I have had friends of those friends sharing their own experiences with craniosynostosis.
The first day I posted about our heartbreak, first I was so surprised at how many of you read the blog without me even posting it to facebook. And after sharing it on facebook I left my computer for only 30 minutes to put Sawyer down for a nap. I came back to find my computer lit up with messages. I cried through most of them. Just deeply touched at how many of you put your heart out with love and support. I found a quote online after Sawyers Appointment when I was feeling really down. “Shared joy is double joy, shared sorrow is half a sorrow.” I felt like it was exactly true. I have felt so lifted since sharing what we are going through. Ive had flowers sent to us to brighten our day, cards and even received a little teddy bear with scrubs on. He will definitely be accompanying us to the hospital.
We have an appointment on Wednesday with the neurosurgeon. I’m actually looking forward to it, and getting some answers. I will again update after the appointment about any changes. Until then we are just enjoying all the little moments. He is changing in so many ways and I’m not going to miss any of that worrying about the future.
Again just a huge thank you for all the well wishes all of you have sent Sawyer this week.
Sawyer is 5 months old today. He has grown so much in such a short amount of time. Sometimes I feel like I blinked and it happened. How is it even possible to grown that fast. I love him more every day. He’s learning and doing new things. He can roll! And can he ever laugh. I love that little laugh. And though he’s getting bigger he’s still so little, so very very little. Much too little to see a neurologist. And yet.
On Friday we saw one. For what I thought was going to be a simple check. Our pediatrician recommended us because Sawyers head is in the 99th percentile. She said it was most likely a routine check and probably just a family head size. That’s how I went into the appointment. The actual appointment in my head sounds like the teacher from the peanuts cartoons. And as I walked out carrying this little precious baby the words started to hit me. “Craniosynostosis, Your sons soft spot has closed 13 months too soon, MRI, CATscan, Neurosurgeon, Health care, Risks.” There was a thousand more things said and though I can wiki Craniosynostosis. I still dont have solid answers. So we wait.
We wait, and we wait ,and we wait, and we wait.
That’s the part that’s killing me right now. Not knowing anything and waiting. Which is why I am sharing this. Its the only thing on my mind, constantly on my mind. And if I have to wait this long I can’t not talk about it. We have an appointment to see an neurosurgeon next week. Sometime in between we should get some info on booking both an MRI and a Catscan for him. Then we will discuss surgery.
And the thought of surgery on my little teeny tiny babies head makes me physically sick, this situation has only truly made me realize how lucky we are. Its scary beyond what I can comprehend but its treatable. So many parents get worse news and awful outcomes. We will deal with this and he will still be a healthy happy boy and for that we are extremely fortunate.
I also wanted to say how loved we have felt the last few days. As we started to tell close friends and family, I was very touched at how many reached out to us with love and support. Without that support we would not be seeing a neurosurgeon this fast. We don’t have many friends or family in Las Vegas but the few we do have have done so much for us already. (Thank you so much Matt and Jess.) And of course I could none of this if the one person I love more than anything wasn’t right there by my side the whole time. I am lucky enough to have a husband who is able to attend all these doctor appointments with me. And even though we are having some crappy days, he can not only make me smile but laugh until my sides hurt. I would be nothing without him and I would be a mess right now.
I will keep this updated for those of you who want to follow our story. After all its all I can think of 24/7. Every time I hold that chubby baby with the smile of gold that melts my heart. So for now we’ll keep waiting, and smiling. Life even with its roller coaster rides is still a beautiful thing.
Yesterday Sawyer got to attend his second ever Birthday Party. I love the mass chaos that surrounds little birthdays. Kids everywhere, parents chasing after them. Especially the melt down hour, when all at once and suddenly all the kids at the party are crying and being whisked away! However Sawyer slept through almost all of the party! Right in the middle of it, asleep in his car seat, kids screaming, Happy Birthday being sung. That kid, sleeps through that but if I move wrong when he’s napping beside me, its game over.
I was so excited to be asked to make cupcakes again! Yay. I had huge plans for these wild animal cupcakes. A personal issue made me lose time and decide to go a much simpler route. And in the end I think sometime simpler is so much better. Plus its kids, they just want to lick the icing! And for some reason if I do end up doing an artistic spin on cake adults always push off eating it because “it looks too good!” For future reference, eat the cake. It makes me happier to see that little cake devoured than to go to waste after all the work!
It was a fun afternoon, loved being around all those other littles. There was a lot of babies around Sawyers age and it was fun to see them interact with each other. Sawyer definitely has a soft spot for the ladies! We need to meet some little men his age, but until then we’ll just keep adding to his girlfriends!
So I recently shared some newborn photos that I took. I am loving getting into photography on another level. If you know me at all you know my camera has just become an extension of my hand. Its not a recent thing. It may annoy some, (see: my husband) But you cant ever go back. I remember telling my mom I didn’t want any pictures in High school and I was always mad whenever she had her camera out. I regret that now. And I am fully prepared to become the more annoying version of my mom when my kids are growing up.
Back to the point. I had Brandon sit with me my first night editing. He taught me the basics behind photo shop. Which helped with simpler edits like the one above. Cleaning up cuts made by little finger nails, vignettes, cream up the skin, blur backgrounds and such. I was having so much fun I couldn’t stop! And they weren’t even my pictures! I wish I had been myself after Sawyers arrival to do our own, but alas I don’t even remember those first 3 weeks!
The real fun however came when Brandon and I switched seats. He worked his magic before my eyes. I was amazed! I knew there was lots we could attempt. But he blew my mind. I literally am dying to take more newborn photo’s. Anyone want to volunteer baby’s! You know where to find me!
But this is by far my favorite edit. (forgive the photo a little the comparison shot is stretched a little on the blog. its really just to show the big edit.)I love shots like this but don’t own any backgrounds yet. So this was all done in post. I thought there was no way to make it look real but here it is and I think it turned out fantastic! Its incredible the before and after! So I just had to share. If anyone wants a complete breakdown you can email me at lissables@gmail.com. Otherwise just let it be magic!