s + h

Tate Tillman

2013-06-27T17:51:00.001-06:00

Here is Mr. Tate's birth story. I love to hear stories, so here's tate's!

It's quite exciting -just ask spencer, there was enough excitement to last him a lifetime.

(ready to go to the hospital)

My due date was June 17, but my dr was going out of town, so I was scheduled to be induced on June 11. I was hoping to go into labor on my own before the 11th, but that didn't happen.

I had everything ready for us to go in Tues morning, house was spotless, dishes, laundry done, bags packed and ready to go. Monday and really the whole weekend before we did as much as we could with B, went to the splash pad, picnics in the park, went to sundance, we tried to spend a lot of time with just her before the babes came.

Tues morning we got up early, got all ready, (they said to be ready to leave when you call in) and called in at 7 am to see if we were still on for today and if we could come in and they said to call back at 9. Hm, bummer but B was still sleeping, so that was okay.

We called at 9 and we got bumped to Wednesday June 12, such a bummer! Bleh. I was so excited to go in and had everything ready. So we went to Jamba, to my parents and just took it easy that day. We even went for a long walk to see if he wanted to come on his own ;) We made sure everything was ready again that night, woke up early again the next morning, got all ready and made the call at 7am.

This time they said to come in!! It's game time!

We got Blayke up, got her dressed, grabbed our bags, dropped off Blayke at my parents, my dad was watching her, and my mom came with us to the hospital.

We got to the hospital around 8, checked in, I got changed and they came in and started an IV of pitocin.

At 9am my dr came in and broke my water. I was a 2 and 60% effaced.

By 10am, I was a 4, they told me I better get an epidural before 11 or I wouldn't be able to get one until after 2 because the anesthesiologist was going into a c-section.

I had been progressing really fast and it looked like it wouldn't be a really long labor (that was before the epidural, which slowed things down) At 10:30 I got the epidural, my contractions were every 2 mins and in the last hour they got really strong and painful really fast. I got my epidural, he put it in but it hit a capillary so he had to take that one out and start over. Getting an epidural in between contractions just sucks to do it twice.

My epidural slowed my progress down, I basically progressed 1 cm each hour.

I was STARVING all day, but of course I couldn't eat so I got to eat ice. Then they gave me popsicles, yum, I had at least 4 grape Popsicles and a lot of ice, finally they started flavoring the ice for me, haha.

Spence and my mom were great, I'm sure they were so bored, but I had fun! We watched tv, they got me what I needed, they helped me turn side to side. Blayke was doing great with my dad, he even got her down for a nap, that's impressive since she's usually too excited to sleep at gg and papa's.

Finally at 5:00pm I was a 10! YAY!!! My dr came in, had me try 1 push to see if the babes would move and come down a bit since he was still pretty far back and he did!

At 5:45 I started pushing. About a half hr later they had me turn on my side to push a couple of times, apparently that did it, and he was ready!!!

My Dr came in at 6:20, I pushed a couple of times and here he came...my dr said he had hair and I started crying, I was so excited to see him, I couldn't believe it was finally happening. I was so happy.

Then things changed very fast. His cord was wrapped really tight around his neck, as he was coming out the cord was only getting tighter. She had to pull on the 'slack' of the cord to get her finger under there around his neck to clamp and cut the cord (she didn't see the cord but always feels for it just in case, which basically saved his life). Spencer was going to cut his cord, I had blankets laid on top of me so they could put him on me as soon as he came out. None of that happened, she had me push one more time, out he came, she immediately passed him to a nurse who took him to the other side of the room and literally started yelling for respiratory to come in.

There were 10 more people in our room in seconds.

He wasn't crying, he wasn't making a sound. Every second seemed like forever.

They started ventilating him, trying to get him to start breathing. I'm bawling in the bed and I keep thinking how this could not be happening and literally just praying to hear a cry and for him to pull though. My dr was great though, she kept telling me what they were doing, that they were doing everything they could and that he was just stunned.

After a minute or so both Spencer and my mom went over to take a look at him while everyone was working on him, my mom turned around crying hoping I wouldn't know she was crying. Spencer was looking out the window crying, he wasn't getting any better.

He was blue, he wasn't moving at all.

The whole world stopped.

My pregnancy was perfect, my labor was perfect, he was monitored all day and they kept mentioning how great he was doing and how perfect he was.

I was so nervous to even get pregnant a second time, all I wanted was to prove to myself and others that I can have a healthy baby, and that what happened to Blayke was not my fault, or any dr's fault but it is who she is and that's perfect.

Exactly 5 minutes after he was born he started making noise, the nurses who were with him started saying that he was going to be okay and were basically yelling across the room asking if I could hear him.

I heard him, my baby boy was making noise, he's moving, and he's going to be okay!

They had to take him straight to the nursery to do some tests and monitor him, but before they did my dr asked if they would weigh him and let me see him before he goes.

He was 8 pounds 9 oz, holy smokes, I was not expecting that! (2 lbs more than Blayke)

We found out the next day he was 21.5 inches long! (2 inches longer than B)

They brought him to me and I got to hold him for about 15 seconds, gave him a kiss and he had to go.

(clearly i was a wreck, but so happy)

It was the longest and worst 5 minutes of my life. We are so so grateful that he pulled through and made it. We found out his heart rate stayed above 100 the whole time, his brain was getting oxygen the whole time, so no permanent damage was done. When he was 1 minute old his apgar score was 1, when he was 5 minutes he was an 8! They said he bounced back so fast they were so impressed and knew just by the way he came back so fast and so well that he was going to be okay. Apparently right before babies are born they have a little reserve of oxygen stored up, that really helped him.

Tate Tillman Denham was born June 12 at 6:35pm!

After all of that they cleaned up the room so Blayke could come in with my dad. Spence and my mom went to the nursery to see Tate and brought in B and my dad. It was so good to see them. My dad was even a little emotional after hearing on his way in what happened. I wanted to record B coming in for the first time to see her brother, but funny how all of that can seem so insignificant after something like that. When she came in, he was still in the nursery but she was just happy to see everyone else!

They were ready to take me to my new room, this was about an hour after he was born. They were taking me to the nursery first to go try to feed Tate. Spen and a nurse got me in a wheelchair and we went to the nursery. My parents and Blayke went to our new room. Long story short, I had just gotten Tate and felt a sharp pain in my back, then it happened again and I felt really sick really fast. I told Spence, take the baby, I think i'm going to pass out, and get the nurse! He took Tate, the nurse came in, and started pushing me out of the nursery in the wheelchair, the last thing I remember is seeing Spencer holding tate and giving him to another nurse and then, I passed out.

My head was hanging down in the wheelchair, my hair hanging all around, Madison and Heidi were in our room too, both Mad and my mom thought i was playing a joke when they first saw me with my head down like that.

They took me to my room and long, gross, story short, I hemorrhaged.

Spen and 2 nurses stood me up to put me in bed and blood gushed everywhere. Luckily they got blayke out of the room before that happened, apparently they asked everyone to leave. My dad saw all the blood and couldn't leave the room, I feel so bad, both him and spence thought i was going to die! I remember seeing my brothers foot when they brought me in the room, I heard them say she can't stand, and them starting to stand me up, then I was out again. Apparently I was unconscious for about 20 minutes, (I thought it was like 2 mins!) The next thing I remember is waking up to a nurse in my face telling me to wake up, that everything was okay, and asked if I could hear her. Spence was on my other side doing the same thing. I had an oxygen mask on and I remember feeling like I could finally breathe!

There were nurses all over, they gave me a ton of medicine to make my uterus start contracting and kept pushing on my stomach. A Dr came in to check things out, my dr was in a c-section. Luckily I didn't need a d&c or a blood transfusion, my levels stayed surprisingly high for how much blood I lost, 3 pints (1000ml or 2 lbs) They kept changing my sheets because they were soaked in blood. They put me on morphine and that combined with the other meds made my body shake...like crazy. That lasted a while, spencer kept thinking I was trying to tell him something but my body was shaking so bad I was making a "zzzz" sound I guess!

The whole thing was about an hr and a half, Spence, my dad were there the whole time, my mom was in and out since Blayke was there then mad and heidi took Blayke so my mom could come in. When it was all over they brought B in, she didn't even mind my oxygen mask, she was having too much fun with everyone there!

We finally got to see Tate again at about 10pm, it was spencer's first time holding him, I had to wait since I was a little too weak.

Blayke saw Tate on her way out in the nursery.

My mom and Dad and Blayke came back the next morning and got to hold him for the first time!

Blayke just loves him!

She knew we were going to get Baby Tate :)

B and T exchanged gifts :)

Blayke kept saying 'wow, thank you baby tate!'

We got a steak dinner while we were there from the hospital, yum!

Tate is doing amazing! I call him a dream baby because he is, he's just a dream! He's so good (knock on wood), great eater, great sleeper, he's the best! If you move him and he doesn't want to be moved he makes this little scream, its hilarious and so cute!

Blayke has been a great older sister and has adjusted really well. She loves to help with baby Tate, always grabbing a diaper and wipes or whatever he needs without me even asking. She loves to hear about when she was a baby too.

I'm doing good, the day we came home though I got a Spinal headache from the epidural, oh my gosh, it's the worst. It really is the worst headache you could ever have plus neck/back stiffness, you feel like you can't even turn your head. Basically spinal fluid is leaking out because they hit something when the epidural went in. The only way to feel better is laying down and drinking coke, that's exactly what I did (percocet and motrin didn't even help), even sitting up was killer.

Spence has been great. My headache lasted 4 days- all I did was basically come downstairs for the day to lay on the couch and try to take care of tate while he took care of Blayke. He was so helpful getting all of us what we needed, he cooked, he cleaned the house, he was great!

When he had to go back to work on monday and I still had the headache, my mom came and got me and the kids and took us to her house for the day, which was great since I really couldn't do anything, especially take care of blayke. She brought us dinners, she cleaned our house when she dropped us off, it was great! Thank you mom!

Our new ward has been great too, we're still getting dinners, they're amazing!

We're finally starting to get back to normal around here, it's been quite the recovery, I'm so glad to start feeling better and more like myself.

See, there was a lot of excitement!
Spencer is now pretty set on just having 2 kids after what happened to Tater's and I, but we'll see.

Happy Birthday Mr Tate, we're SO SO happy you are here safe and sound!

I mean, seriously....PRECIOUS.

House

2013-05-09T22:51:00.000-06:00

We're building a house!
(did I just say that? It's so surreal!)

We found it in December, in Jan when we got back from Az, we wrote up an official offer and started the building process.

We've been out there every week to see the progress, except for while Blayke was in the hospital, 2 weeks was the longest we've gone without seeing it.

They're at the fun part now, they're putting in all the things we picked out like flooring, cabinets, counters, painted the walls and the trim, its exciting to see it all come together.

Here are some pictures from the beginning of Jan up to about a week ago.

basement walls/foundation

basement being framed

Garage pad, and the main floor

[those are apts behind us- part of a different community- they're expensive, $1000 for a 1 bed?
We like that we won't be backing up to another house right behind us]

Main floor framed!

The upstairs floor, no walls :)

Main floor

Family room

Kiddies bath

Master bedroom

That's ours with the workers on top!

Drywall in master

Master

Garage

Kitchen

Trim on and painted

2 tone paint being done

Master closet :)

2 tone paint done in kitchen!

Family room

Master

Stone, stucco, and that cute little light are done!

The door and the accent color above the garage just need painted.

And this little precious standing in her soon to be new room!

(she has already changed rooms on us, that was going to be the babies room, but now it's hers ;)

We're so excited and grateful to be building this house where we can finally settle down for a bit.

We've moved 7 times in 4 years.

No bueno.

They are finishing up this week and next and we should be closing in the next week or two!

[it's a good thing since I am 34 weeks and prefer to have the baby once we've moved since I have no idea where anything is] :/

As of Late

2013-05-05T22:52:00.000-06:00

This year has been crazy! The surgery and stay was a big part of that. Blayke's recovery has been great. However, when we went in for her 6 week follow up with her spasticity Dr, the Dr recommended another surgery that she thought Blayke needed. She called an orthopedic surgeon while we were still there, the surgeon was on vacation but still answered his cell (good doc) so she could tell him all about Blayke.

The orthopedic surg got us in as soon as he could and we had an appt 3 weeks later.
Long story short, 2 weeks ago she had an Achilles tendon lengthening on her left ankle.
Her first big surgery in Jan was great, it did everything that it needed to do, but once that was done, they could see that the way her muscles and tendons have been developing in her left ankle were too tight. Hopefully, in a few weeks when she gets her cast off we will see even better results from both surgeries.

It was a harder decision to do this second surgery, usually Blayke's "team" is all on the same page, and this time, they weren't-well mainly just her PT. It was hard to make this decision, but ultimately we want what is best for Blayke, and we, as her parents, have the final call (scary) so we have to go with what we feel is best. (which is hard when you're being told different things) BUT, we could see she wasn't able to progress like she should have been and knew she needed something more. Hopefully it was her tendon preventing that.

[Spencer wrote "ANDY" on the bottom of her cast :), Toy Story anyone]

We moved 2 weeks ago, the SAME weekend she had surgery. We moved to my parents for about a month while we wait for our house to finish. Her surgery was on a Friday and moving day was Saturday, crazy. So we "moved" our stuff that we'd need while we stay at my parents Thurs night. The rest of our stuff was packed and ready to be moved by all our lovely helpers Saturday morning.
Friday morning we had a 6AM check in at Primarys, we had to leave at 5:15, not fun after a busy week of packing. Blayke was the first patient of the day, we were done about 10:30, we went to my parents to let her recover and rest there. Since I'm preggo, I'm not much help anyway, so it worked out so I could just stay and take care of Blayke. BTW, her recovery has been amazing! The first day she was sore and not walking much at all, but now she runs all over the place with that cast on. She only needed pain meds for a couple of days. (I swear she has a high tolerance for pain) She's doing great and we're settled here at my parents and all our stuff is in storage, again. :) 3rd times the charm right mom and dad! We appreciate them letting us stay here, it's so fun, it's like being on vacation, for us anyway ;)

[she now enjoys reading the newspaper just like GG and Papa in the morning]

Blayke is potty trained! We had a very small window of opportunity before the move so I took it and we went with it. I have been waiting for her SDR surgery to be over with to start the process. She's been doing great, there is and has been a lot of changes in her life which they say don't do it when there's a new baby or a move and we have both, in fact 2 moves, so we had to do it quick. She did great, of course she had accidents, but im so proud of her for doing so well, even through this second surg, she did great and always told us when she had to go potty!

[don't mind the bed head :)]

Blayke started preschool! (see what I mean about changes/big events going on in her life. Let's have everything happen at once okay). She has been in the Early Intervention program (in home therapy) since before she was 1. Once they turn 3, they are turned over to the school district, tested and if they qualify for services, (if they need more therapy, OT, ST, PT, for example) they start preschool. She was tested in Dec and they thought preschool would be great for her, she loves school. Last fall she went to the toddler class (1x a week, 1 1/2 hr little preschool) and she loved it!
Soooo since she had major surgery when she turned 3, she wasn't going to start until the end of Feb at the soonest. Well, then we thought we were moving a month later and I didn't want to put her in school for a couple of weeks just to take her out and transfer her. So we waited until we moved to my parents, which is the same school district (and hopefully same school after they make the boundary changes this summer) as we will be in. Now that she was having this second surg, school was again on the back burner. As it gets closer to baby boy coming, we're taking a break from her therapists at Primary's, but I wanted her to have some therapy, so she started school! An OT, ST, and PT come into her class and work with her on certain days. :)

I was so nervous about her going to school, again because of so many changes going on, she just potty trained-I didn't want her to have an accident at school, and she has a cast on! But the smart, strong little cookie she is, was so excited! She started 2 weeks ago. she goes Mon, Wed, Fri from 9:15 to 12, almost 3 hours, isn't that long? I think so! There's only about 6 weeks left in the school year, so it will be good to give her an idea of what school will be like when she starts again in the fall. And she's at an Elementary school, I can't believe it, she's still so little to be starting school!

We got her a new backpack, she was so excited to go to "cool"! She did great on her first day, she loved it, we got to see her classroom, then we had to leave (my mom had to come with us :) and she was just fine, she found the kitchen and the babies in the room and was going to play. She didn't have any accidents, she was the line leader that day and she loved playing on the playground! Her teachers kept saying when we picked her up, she's a mover! And they asked if she had been to school before because she did so well and played with everyone. I was SO proud of her, I'm so glad she was okay, I was so nervous for her the whole time she was gone. I asked her if she had fun and wanted to go back and she said "ya, nigh nigh then cool!" I am so so proud of her!
She already has a best friend there, Lyla, and has asked if Lyla can come to GG and Papa's house! haha

Since she has her cast on still the bring a wagon to take her to and from class, she loves it :)

Blayke got the sweetest, most precious new baby that I have to share. The sweetest girl, who we've never even met, (Ashlee, I'm talking about you!) who also has a little girl who had a stroke had this made for Blayke when she found out she going in for surgery.

It is the cutest baby and what melts my heart is the 2 hearts on her left hand and foot to symbolize Blayke's affected side. I love that so much!

Blayke is kissing the heart on her left foot.

And because she is so sweet not only did she have that specially made for Blayke and sent it to us, she got the cutest bow tie for baby boy and a bracelet for me! Thank you for thinking about us too, I don't know how to thank you enough! (btw, I'm keeping the card that you sent to her also, so so sweet).

It's nice to have a friend who knows what you are/have been going through.

...............

Pics of the house coming soon :)

Rhizotomy Recovery [part 2]

2013-04-01T13:45:00.001-06:00

[another picture overload ahead] ;)

Our second week at the hospital was all therapy. She had an hour and a half in the morning and an hour and half in the afternoon, both PT and OT. I couldn't believe how busy we were there. She had to be ready by 9, so up, meds, pain meds, breakfast, and in her wheelchair so we'd be ready when the therapist would come to get us.

She had to relearn how to sit up on her own, crawl and walk. She did great and picked them all up very fast, especially considering how weak she still was.

Blayke sitting criss cross for one of the first times in her life! It was a big deal!

This was actually at Saturday therapy, she would do good for so long then need a break.

I just wanted to scoop her up and hold her during these times so bad! So, I would get down and snuggle with her instead.

Learning to crawl again.

Saturday afternoon in our new hospital room, we moved rooms Friday night, since she had so much therapy they moved us closer to the therapy gym, we were just down the hall.

Blayke and Spencer watching "rella".

(notice the blankets wrapped on each side of her bed? Since we were out of a seizure monitoring room, they wrapped the sides of her bed with blankets and taped them down just to be safe)

Saturday night after our visitors left, they brought around a craft, B and I sat in her bed and made a puppet! Look at her using her left hand to hold the glue!

Finally on Sunday she got a sponge bath, I had literally been asking for 2 days for her to get a bath. Everyday there was something, or it was shift change for the nurses, so I made sure on Sunday she got her bath.

That morning we went to church at the hospital, it was only 30 mins and we could go how we were. If you ever need to be humbled in your life, go to church at a children's hospital. It's a whole lot of emotions all at once.

Washing Blayke's hair with a no rinse shampoo since her incision on her back and her leg couldn't get wet, we did the best we could with the bath.

We actually just got to start using regular shampoo at home now that her incision has healed-we didn't want any risk of infection.

(she did have spinal fluid in her back the second week, as long as it didn't leak or get bigger we were okay. But if if did, they would of had to go back in the incision, find the leak and fix it. It was touch and go for a couple of days the second week with that. Even Dr. Walker, who has never had to go back in to operate to find the leak in his whole career, thought he might have to . Luckily, it didn't leak or get bigger, we all watched it super close, and I was nervous about that going home. But eventually, the spinal fluid started absorbing back in and the fluid around her incision started going down).

All clean and clothes (pj's) on!

My parents brought us Sunday dinner, oh my gosh it was so good.

Hospital food, well cafeteria food, really all starts to taste the same.

She loved having visitors, can't you tell?!

My brother dancing in the hallway with her that night.

Sunday's at the hospital are pretty quiet.

New mode of transportation- just hold on to daddy's pocket :)

Monday morning we were back at it!

Monday I had to leave for my 20 week ultrasound to get baby boy checked out I hated to leave but my mom stayed with her, it was the first time I stepped outside the hospital in a week.

When I came back she was in afternoon therapy and practiced taking some steps to me!

She loved riding the tricycle, it was HARD work, she was doing really good though.

By the end of the day this is what her bed looked like, a little bit of everything in there with her.

Spence would bring me yummy food at night for dinner :)

Good job Blayke!

Reading books in bed with her night stretch splint on

Baby boy pic from our little bathroom: 21 weeks.

Occupational Therapy, making a sand picture :)

My mom made Blayke that cute Valentine advent calendar, she got to open a treat everyday.

She sure loves her GG and Papa!

By the end of the week she was getting stronger and braver! She didn't want to be in her bed as much or her wheelchair unless we were going somewhere. We had that red mat from the therapy gym that we'd put down on the floor and we'd play on there to change things up. It was hard because our room wasn't that big and she wanted to move around but wasn't stable on her own.

Day dreaming :)

Playing with mommy!

Practicing walking back all the way back to our room.

Walked her first 10 steps independently to me!

Look at that concentration, she did SO good!!

Our last day of in-patient therapy!

A wand that one of her friends there in the Neuro Science trauma unit, aka our home, gave her!

The therapists loved her, can't you tell by the entourage she has with her!

Worn out in that cute mini wheelchair. They wanted to send one home with us, but the small ones are hard to come by, and we can use a stroller instead, which is easier anyway.

We got home Friday evening, Heidi, Madison and Kyle (the godfather) and his friend Brock all set up these cute welcome home decorations! It was so so sweet! All the balloons plus there were more decorations, I wish I would have gotten a better picture! It was so so nice of them all! (thanks heidi! ;)

Blayke wasn't quiet sure what to think at first about being home, since her hospital room was "home", but she warmed up to the idea really fast and loved being home!

Kyle and Blayke, he was so nice and came up from AZ just to see Blayke. It worked out perfectly, they got to see her in the hospital Friday afternoon and saw what it was like for her there and then we got to come home that night! It was so nice of them to come up!

6 weeks after surgery we had a follow up with her Neurosurgeon, Dr. Walker! We sure love him and he sure loves Blayke! While we were in the hospital he kept telling the nurses, then my parents and then he broke the news to me that when it came time for Blayke to discharge to go home, that she would be going home with him. It was the cutest thing ever! He's not one to joke around like that, someone told me that in the 20 yrs they've worked with him, they've never heard him say anything like that. It was really special and meant a lot.

Thank you Dr Walker for changing her life forever! Her quality of life will be so much better because of you, we will always be grateful for you!

Rhizotomy Recovery (in pics)

2013-03-18T11:09:00.001-06:00

During the first few days after surgery Blayke slept a lot, which was great. Dr's and nurses were still coming in almost every 2 hours it seemed like. After they would leave she'd fall right back asleep.

She lived in diapers for the first week.

We had to be really careful with her left leg since they cut so many nerves, they said anything grazing it (like a sheet) or light touching would really bother her. So if we had to touch her left leg to touch it firm.

Here's our room!

My lovely bed, the couch, it folded down and actually wasn't that bad.

My mom and sister!

My mom was amazing and came every single day for hours. It was so nice for me and for Blayke. Blayke slept through a lot of it the first few days, but it really helped break up my day, then Spencer would come after work.

Spence was great, he came over everyday right from work to stay for a couple hours then go home to go to bed. He brought me food a few times which was a nice break from the cafeteria food :)

Blayke had 2 IV's all week, one in her hand, the other in her foot. Towards the end of the week the needle in her hand broke so they had to do another one. They didn't even bother her, and it was better so she could get her meds through those instead of being woken up.

Tuesday she got a cast put on her leg to stretch her ankle. Which was nice because the cast would help with the tingling feeling.

Primary's is so good about trying to keep the kids entertained! We played hospital bingo in our room one morning on the TV while they played in the playroom there. It was nice they included those who could not leave their rooms. They even brought around a prize that she could pick out!

On Thursday they sat her up and into a wheelchair for the first time, you can tell- she was not loving it, it was a little painful for her. Once she was in the chair, she felt a little better.

When we got to the therapy gym she saw the tricycle and wanted to get on it, they were so surprised, so they let her sit on it for a minute.

After the therapy gym she wasn't ready to go back to our room so we went to the playroom that they have at the hospital.

When we got back she was ready for a nap!

ready to go!

Thursday or Friday that week she started "therapy", it was only about 15-30 minutes long. She was good for about 10 mins then she needed a break and would lay down on the mat.

It was hard work learning to sit up again.

She had to relearn how to crawl too.

Eating breakfast in her room- room service for her was amazing! I could call and order anything all day everyday.

before bedtime, playing in her bed together!

Always a diva ;)

Saturday afternoon, watching "rella" aka Enchanted, for the 400,971th time. ;)

Update - SDR Surgery

2013-03-03T16:05:00.001-07:00

I'm finally getting around to updating on the surgery. I thought I might have some time in the hospital to keep everyone informed but it was so busy, there was always something going on!

First of all, we just have to say THANK YOU! Thank you to everyone who has supported us, for the calls, the emails, the texts, I wish I could thank you all individually with a big hug, it has meant so much to us. Thank you for praying for her, for us, through the whole experience. I'll never forget that feeling while she was in surgery, and all the people who came together to support us during that time. Thank you, thank you, thank you.

Blayke has blown me away with how well she has handled this whole experience. That was one thing I was so worried about, and it was like she just knew how to handle this. She understood that she had to lay still in the bed and have all the monitors hooked up to her. I was so worried that she'd want me to hold her, (weird thing to worry about right ;) and I knew they wouldn't let me since she had to be flat the first few days. She had the surgery on a Monday, I got to hold her Thurs and that was only transferring her from her wheelchair to her bed.

The actual surgery went great!

After we checked in early that morning everything went very fast. We went into a room, and nurses were in and out, we got Blayke in the hospital clothes, which were adorable. Her little hospital gown kept showing her back and that, that was hard for me, it made me so sad knowing the next time we would see her back, there would be a scar there. I know I know, the scar is kind of the least of our concerns, but for me, it makes everything, the last 2 years, very real. Maybe somewhere inside I've been hoping that one day she would just be fine and that this will be over for her, like it never happened. A scar makes it permanent, and real, and one day she will know everything she has been through. I think about the day when we'll have to tell her about the scar on her back and why she has it, and about her stroke, and all of that just breaks my heart. I'd do anything to go through all of this for her.

The anesthesiologist came in and told us the plan, asked a few questions, etc.

Then Dr Walker, the neurosurgeon came in. We went over some things, he told us more of what to expect, and we found out how much more amazing he is than we thought! (he was the first Surgeon to do this procedure in the US, he brought it over from a guy he studied with in South Africa, crazy right?! He's the best.)

Before we knew it the anesthesiologist came back in to get us and said it was time to go.

As we followed him I held Blayke, I kept whispered to her that everything was going to be okay, and how strong she was, and how this was going to be good and worth it in the end. (i was trying to convince myself of those things too).

We got to the double doors in the hallway where he stopped and told us this was it, we couldn't go into the Operating Room since it was already sterile. I assumed, before he told us otherwise that morning, that I could hold her while she goes under. I've always held her while she goes to sleep for botox, and her mri's, but this time I couldn't since it was in the OR. He told us to say our goodbye's. We told her we loved her, each gave her a big hug and kiss, the anesthesiologist reached for her, and Blayke and I both lost it. The Dr tried comforting Blayke while she was reaching for us and Spence was trying to comfort me. I'm not going to lie, it. was. hard. I hated seeing her sad and scared. The Dr looked at me and promised me that they would take good care of her. All I could say was please. He did say later that when they got towards the end of the hallway in the OR area that she did calm down. She had a tinkerbell barbie with her the whole time that the nurses gave her that morning for her birthday.

Spence and I checked into the surgery waiting room, the lady could tell I was upset so told us to go downstairs and get food before the cafeteria closed to change to lunch. When we did check in they let us know that we will get a phone call and not to worry but it will be an update, so that was something to look forward to. The room was divided into cubicle areas to give people some privacy, which was nice. We waited. Spencer left after about an hour to go to the U right there to do some homework. He called my parents after B went in, so they were on their way up. A nurse came in to tell me they had put an epidural in and that they wanted to leave it in to help with the pain for the first 2 days. After about 2 hours I got an update call in the waiting room, the nurse said everything was going perfectly, Blayke was totally out, and Dr walker was under the microscope right then working away-which was weird to think about.

About an hour later Dr walker came into the waiting room, they were done, it went perfectly! They cut 45% of her nerve rootlets, which apparently was exactly what they thought they'd be cutting. She did great, she was being prepped to be transferred to recovery so we just had to wait for her to get to recovery and wake up. Finally 30 -45 minutes later they called me up and let me go into recovery to see her, she had fallen back asleep when I went in. It was so good to her! Her face, her eyes and lips were puffy and just looked a little different, but she looked good! They started her on liquids and crackers, and unfortunately she threw them up all over herself. They cleaned her up, changed the sheets with her on the bed, rolling her side to side, which was not fun. Poor thing was miserable.

We were in recovery for about an hour, instead of 15 mins, before we could leave to go to our room, we met Spencer and my parents in the hallway. When she saw them she first got a little sad, she was so out of it, then she was okay and called papa up, she wanted him to come up to her bed so she could see him, and then GG, and for spencer she said 'hi dad' and waved. It was so cute! Her room was in the Neuro Science Trauma Unit of the hospital, we stayed in that unit the whole 2 weeks. Her room was actually a seizure monitoring room right by the nurses station. With her history and all of these new meds, they wanted her monitored 24/7 with a camera.

The first day was pretty good except that she was sick from the anesthesia and couldn't keep anything down, it was sad. She did try to sit up a couple of times, and we'd hold her down and told her she couldn't sit up. I think the epidural really helped her stay down, she realized pretty quick that she just couldn't move and she really didn't want to. (huge blessing) and she was on a ton of pain medication. (oxycodene, valium, then since she was throwing up, they started her on zofran and reglan, at that point she was on 10 different medications, had 2 IV's, plus the epidural- needless to say, she was pretty drugged).

I was so worried for our first night, we had such a bad experience last May, and I was dreading it. I was so exhausted, I couldn't sleep the night before, I was so stressed and worked up during the surgery that finally relaxing was catching up to me and quick. Spence left around 7 that night, she threw up a couple more times. We ordered a normal sized bed for her, (she had been in a crib bed all day) so I could lay with her if she wanted. The bed came quick, they transferred her into the bed and she threw up, again. Luckily that was the last time, it was almost 11 by then.

She fell asleep after that and did great the rest of the night. They came in every 2 hours to give her more meds, she slept through almost all of it. Her oxygen levels dropped in the night, they brought in a mask and put it under her mouth so she could get more oxygen. They weren't worried though, that can happen with the Valium she was on.

Overall the first day/night was great, better than expected even! (minus the nausea).

to be continued... :)

Selective Dorsal Rhizotomy (SDR)

2013-01-20T12:50:00.003-07:00

Okay I realize I don't really keep this updated anymore, but this is something I've wanted to share for a long time. Since last April, when it was first recommended for Blayke.

I'll try to not make this too long...

Last April, I took Blayke in for her 3rd round of Botox injections at Primary's. By now, we have this thing down. Everything went as it usually does for botox. I wait in the hospital room until Beverly, the NP we work with and Dr. Gooch come out and tell me how great it went. Then, I only have to wait a few more minutes until she wakes up before I can go back. But in April, when Beverly came in she said, "it hit me while we were back there, Blayke would be perfect for the rhizotomoy surgery, it would help her ankle so much".
I was could not believe what she was saying.
The night before, I had a dream that Blayke had surgery (but it was just on her ankle), and it completely healed her. She didn't have a hard time walking anymore, it completely changed her life.
I've learned something about myself in the last 2 years, I like to know what is going to happen, I need to know what to expect before I'm hit with the hard facts. I need it in baby steps. It's tough to be told and then to realize that your child's life is not going to be the way you expected.
Of course when she told me this, I was like, Wow, really, Okay. I think I even told her I had dream just that night that she had a surgery and it changed her life. So she said we'll talk about it in 6 weeks when we come back in.
I went home and of course I did what anyone would do, I googled. Selective Dorsal Rhizotomy.
Woah, not what I was thinking the surgery would be like. It's much more intense.

So what is a SDR you might be wondering?
Well, they make an incision on her lower back, they remove bone from her spinal cord, and find the nerves they are looking for. Each sensory nerve root is divided into 3-5 rootlets. Each rootlet is stimulated and then comes up a screen with a number of how tight it is. Dr Gooch will be at Blayke's feet holding them at watching the monitor when that happens, which will be over and over. By watching the monitor and feeling how she reacts, she will be the one to tell the surgeon weather or not to cut those rootlets. Dr. Gooch will completely tailor this operation to Blayke and her needs. She knows Blayke, and will know what to keep and what not to keep, they may keep some that are a little tight and vise versa. That's the amazing/scary thing about this surgery, it's not black and white, it's different for everyone. Which to me is great, but like I said, scary. Once they have cut all they need to, which I've been told is usually about 60%, they will finish up. The procedure will take 4 hours.. Obviously, there will be a whole team of Dr's and assistants in there. Trust me, scheduling was not easy since they had to coordinate so many Dr's (and a team's) schedules.

This will eliminate all the spasticity in her left leg. Spacticity is basically tightness in her left leg, muscles that aren't able to relax. That's why we would do botox, to relax the muscles that way. The more you do botox injections, the less effective it is. We did a full year of injections, a total of 4 times, her last one was in August. (which really isn't that many, some do years of botox, but we have a great team and I like to think they're very proactive) We started botox before she was even walking. This is the longest we've gone without it, it usually last 2-3 months, and the poor thing is so tight in her leg, she has a really hard time walking lately and rolls her ankle a lot. When she gets excited is the hardest, she tries as hard as she can, but her muscles just tense up even more. She walks on her toes her left foot, she trips, its just heartbreaking.

In that picture you can see what the difference will be like before and after surgery. There is going to be a LOT of nerve damage done. She actually starts on a RX tomorrow (7 days before surgery) to help with the sensitivity/tingling she will have afterwards. She won't lose any feeling though, like touch, heat or cold, it will still be there. It will be more of an intense feeling that her leg, foot is asleep, just uncomfortable, that will last a few months after the surgery but will get better.

I love how the surgeon explained that the nerves in our lower back, the ones they are going to cut, receive messages from the brain. Those nerves right there always want to always be tight, and take over. That's where the brain comes in, the brain tells those nerves no you need to balance out. So, since Blayke had a stroke, that is happening for her, it is on her right side of her body, but not her left. (just imagine how hard it would be to walk and function when your body is uneven like that). So they're "manually" going in to tell (cut) those nerves to balance out. Make sense how it all correlates with the brain? Interesting huh!

With this surgery you have to be the perfect candidate. Basically, they will not do it if they don't know that it will work. Last fall, after a lot of waiting to get in, we had to meet with the spasticity team at Primary's to see if she even qualified. It was a PT, OT and Dr. Gooch. The PT and OT start and go over basically a checklist. They measured her range of motion, they watched her walk, with and without her brace. They stretched her and asked us a bunch of questions, like what we have done until this point. (botox, casting, therapies, etc). Then Dr Gooch came in, and basically did the same things, while she went through her own checklist. Spence and I were both super nervous not knowing what they'd say. I still remember, they all 3 looked at each other, they didn't even have to say anything or go talk about it in the hall like I thought they might. They basically said without any hesitation, "she needs this, she is the perfect candidate". And they told us what would happen without it and that she would need orthopedic surgeries throughout her life if we choose not to do this.

We knew going in that if they said she was the perfect candidate, that we would do it. Especially when they told us what her life would be like if we didn't do this operation. That made it easy. There are risks, it's a surgery, of course there are, she's going to be under for at least 4 hours, there's risks with that, but she's always been fine going under and coming of anesthesia. They told us the biggest risk would be doing this procedure on someone who wasn't perfect for it.
It's almost crazy, the "perfect candidate" is a very fine line. She had to have the right amount of tightness, the right amount of weakness, and has to have the right amount of strength for recovery.

Anyway, after we met with the Spasticity team, we knew we were going to do it, but we still had 1 more thing to do, meet the surgeon who will be preforming it. We had to wait a few weeks but I took Blayke in, we 'reviewed' for a second and I'm not kidding, it was like in the first minute, he said "she is perfect for this surgery". We pretty much knew it was going to happen, but he does have the final say. For him to be so sure, and so confident about it made me feel really good.
This surgeon is known for doing this surgery here, he actually studied in St Louis with the Dr who first started doing it. He loves doing this procedure, he might even come back after her retirement this summer just to do this rhizotomy. (yeah he's retiring this summer, that was close timing!) I've only heard amazing and more amazing things about this surgeon, he's the only one that does it, which i like a lot.

From there we just had to wait for the phone call to tell us when the surgeon, Dr Walker and Dr Gooch's schedule could be coordinated to do this. They only do it on Mondays, and they only schedule 1 a day.
Soooo.... of course Blayke's 3rd birthday falls on a Monday this year, and that's the day they had. I wish they had something sooner in Jan, but if we tried to go later, there was just always something. I did say first thing on the phone that that is her birthday :( I literally had to talk myself through it on the phone with her, it's okay, we can celebrate the weekend before, she won't know it's her birthday, it's okay, lets just do it. (I'll just have mommy guilt that day, but i'll probably be a mess anyway, so what's a little more).
She'll be in the hospital for 2-3 weeks. (I've heard 2, but the surgeon told me 3, so we'll plan for 3 and hope for 2). Which also means, I'll be in the hospital with her, she has to have a parent there 24/7 since she's so young. Besides, it's not like I could leave her there anyway, what would I go do? Luckily baby boy is in the womb so we don't have to worry about that. She'll be flat on her back for the first 3 days afterwards, and obviously, she'll be pretty out for that. By that Friday we'll be starting inpatient Physical Therapy. We'll do that at least 2x a day in the hospital. We'll start with her standing at the side of the bed. Yeah, we're literally starting all over. She won't be able to walk afterward. It will take about 2 weeks for her to re-learn how to walk. (which is why we will be there for so long).

Once we're able to leave we'll start intense therapy ( 3x a week) with our therapist. To see the maximum results, it will take a year. It's a little overwhelming, but I know she'll do great.

We're honestly just grateful for this, I keep thinking this is it for her, this is what will change her life. I sure hope it is. I talked to a mom of a little girl who had it done last year, she's doing good, but it hasn't changed everything for her. They still face difficulties, and braces, and possibly another surgery. So I know, in reality, that this won't take her stroke away, she'll still face problems and probably always will. But, we'll do anything (to an extent) to try to help her along the way. This is one of those things along the way. But I'm sure going to hope and pray for the best results possible.

This surgery is mainly for her hip down, but they have seen in some cases where the arm and hand naturally start to relax as well. That's what we're hoping for!

We have 1 week (scheduled for Jan 28th) left before this happens, we get to celebrate her birthday this week and start getting ready for our stay.

Wish us luck, all 3 of us (actually 4-baby boy better be good :), we're going to need it!

Baby # 2

2012-11-28T14:47:00.001-07:00

It's true, cake's is going to be a big sister!

Love those pictures, thanks to our amazing friend Whitney. Want to know something funny? When we had these pictures taken we didn't even know that I was pregnant! We had fam pics and since we were 'trying', Whit took some of these for us! Another funny thing, I actually was pregnant at the time, it was just too soon to know! Crazy huh!

I found out the day before Spencer's birthday that I was pregnant. I knew I would find out right before so had this whole thing planned days before. So 3 days before his bday, I started to realize that I could not be pregnant and that I had nothing else planned for his bday (he already bought himself a present)...

Luckily I was ;)

And we did go out to dinner of course, while my parents watched the babe :)

I waited 1 whole day and a half to tell him, it was SO hard, but I wanted it to be a surprise so bad. He thought we wouldn't find out until that weekend.

So I got balloons and put some of those free things that you get for your birthday, like red robin burger and tucano's, etc. Luckily I found enough, and put 1 in each balloon.

Then I put this note in the last balloon for him to pop...

Finally at 5:30 when he got home from work he popped the balloons and I made sure he did the yellow last. :) He was shocked and excited! He couldn't believe it, it was sooo nice to finally be able to talk about it with him.

Spencer's family was in town that weekend, so we took advantage, had my family over after conference and basically did the same thing to tell them. It was fun and exciting! And I couldn't have kept it from my mom any longer, I almost called her the day before to ask her something and realized I couldn't.

So far the pregnancy has been great, I had a fever almost every afternoon at 5 weeks so my dr had me come in at 6 weeks. I LOVE HER! She came highly recommended and is amazing, I want to be friends with her, she is just that comfortable to be around.

She is amazing with my history and listens and prevents, and I am happy to have her.

Plus, I get an ultrasound every time I go in!

Boo-yah!

[baby at 6 weeks and 1 day, already had a heartbeat so chance of miscarriage went down to 5%, sweet!]

I had a 10 week appt last week before Thanksgiving, baby is looking good! Nice, strong, heartbeat.

Blayke came with me this time, it was fun for her to see the baby in the ultrasound, we took home the picture and she shows everyone and says baby. It was also nice for my Dr to meet Blayke, she couldn't believe how well she's doing with everything she has been through. :)

I've hardly been sick this time around, which is completely opposite then when I was preggo with B. [Only thrown up 2x! but I am on zofran]

I'm super hungry all. the. time. It's almost annoying how hungry I am and how much I eat, but it's actually been slowing down the last week or so.

I thought for sure the Dr would have said I had gained 5-10 lbs, but I actually lost a pound, so I got to have 'extra thanksgiving'! :)

Aside from occasional nausea and headaches, I've been feeling great. Which is such a blessing, because with Blayke, I can't slow down, we have a sch and too many appts for momma to be sick.

Spence has been great! He's always surprised at how hungry I am, but is so good at filling my requests of what I want to eat. Did you know Sonic's popcorn chicken is only $1 after 8pm? Good to know right :)

Blayke is honestly going to be the best big sister, she LOVES to help! She LOVES babies, real and fake. We call her the baby whisperer, if a baby makes one little fuss, she says uh-oh, or aww, and goes over to help by putting the pacifier back in. Seriously, she is obsessed and loves them so much. I hope that stays for the next year or so :)

Oh and the baby is due June 17, 2013

We're excited!

Summer take 2

2012-09-23T21:56:00.000-06:00

Love her poses!

copying daddy outside and on the phone ;)

(Blayke's cousin, Christian, had a sleepover at our house and he got to go with us to her Occupational therapy appt with us the next day, they both loved it!)

straightened hair!

Camping in the backyard at the last minute with friends after we went to din din. We found out our backyard is very uneven and came in at midnight. Good thing since the sprinklers were on at 6am.

Not feeling so well one morning after another seizure, poor baby. :(

It wiped her out and she fell back asleep after it happened, which was about 9am and slept until 1pm.

She got to sleep in mommy's bed, I stayed in there with her while she slept and was armed and ready with our emergency medication or to go to the hospital. Luckily, she didn't need either when she woke up that afternoon. (her pattern of seizures is coming out of sleep, waking up, so you can see why I wanted to be there when she woke up, just to make sure she was okay)

She felt so much better by that afternoon!

And the next morning we were at the hospital for another round of botox injections.

Can't believe it's been a year since we started botox.

Out of it with her hospital bracelet on from the anesthesia.

The waiting room for Neurology at Primary Children's in Riverton.

I was thinking how nice it was, looked over and saw a sign that the whole lobby area was donated by the LDS Church. How cool is that? So, of course it's nice!

Blayke had an eye exam just to make sure everything was okay, which it was, and had her eyes dilated, which she hated, but the car ride home was okay. :)

She also had an annual hearing test last month, she passed with flying colors!

(they check her eyes and ears annually, we weren't worried about anything)

And she had her first visit to the Dentist, she did great! She loves brushing her teeth, I think her 'Dora' toothpaste might have something to do with that.

And, Hello serial casting.

Blayke's PT casted her to ankle to stretch and relax the muscles that were just injected with botox a few weeks ago.
She had her first cast on for a week.
She got a second one right afterwards, not so much for stretching anymore but for gait training purposes.
She walks really well with a cast on, it does not get in her way at all!

This girl really has been such a champ with the each of the casts.

She never complained, wanted it off, they didn't slow her down one bit, except for not being able to get in the water....

and that my friends was torture. How sad/cute/precious is that pic?! I love it.

The casts were pretty dang cute, we got purple both times.

She is a champ, and the best mommy to her babies.

How did we get so lucky?!

The Godfather, Kyle, came to town to stay with us and spoiled Blayke, like always.

Blayke saying 'cheese' and being her sweet little self!

Lagoon

2012-08-16T13:19:00.000-06:00

We went to lagoon with the whole fam a couple weekends ago, it was sooo much fun of course. We got there at 10 and left at 10, it was a good time.

I didn't have my camera or take my phone around since I didn't want to lose it or get it wet in the water park, so not many pics, but B had so much fun!

She loved the car rides, boats, helicopter rides and the carousel the most!

(and being with her cousins)

Grandma and Grandpa even took her around with the rest of the kids so we could go on the big kid rides, let's face it, roller coasters never get old!

Summer

2012-08-02T13:26:00.001-06:00

The first half of Summer in pictures!

Dino museum at Thanksgiving Point with cousins!

We moved about a month ago to Cottonwood Heights! We love the area, we love the house...it has a backyard, coming from a town house, that's a big deal! B can play out there for hours.

We live close to the new splash pad that we love and visit often with cousins, friends, or just us!

My sister put that pic on fb since people are always asking if they're twins.

Baby girl after nursery holding her picture that she colored that day.

Saying prayers in nursery,precious.

Blayke had her first custom DAFO brace made this summer. They cast her foot, then cut it off and send it to Seattle to be made just for cakers.

The end result is the one on the left. Since it was custom we got to pick out the colors, so we went with pink, white strap with a leopard print across the strap.

The brace on the right is a night stretch splint that she wears to bed each night, we also got to choose the colors and strap for that one.

Modeling her night stretch splint before bed, it' looks a little intimidating, I know. But we tell her how pretty it is and she loves it! ;)

It's taken a while to get the brace since it was a custom one, so Blayke has been able to wear sandals all summer long, which makes us happy! We just saw her PT, she is actually sending it back and is getting it made a little different, so we have another week or so without the brace.

Blayke and Sadie at the animal farm

BFF's

California [part 2]

2012-07-22T17:07:00.002-06:00

Spencer got a hair cut on one of our last few nights we were there. I don't even remember how it came up but we were at the sunset market and there was a barber shop right there and it advertised that they cut flat tops.

The guys got talking and decided someone should do it, somehow Spencer was the chosen one. He asked me if her should do it and I told him yeah, do it, thinking he wouldn't do it! And he did it.

We all waited and watched while the barber thought he was crazy. He asked him a couple of times if he was sure he wanted a flat top and if he knew what that was, haha!

disbelief!

After!

Notice the tan line from his hair!

It lasted about a week then I shaved it once we were home.

He would go to take off his hat and would forget about his hair being a flat top, so he wore his hat a lot until I was able to cut it. (were in the hospital, dealing with all of the stuff going on with Blayke and he had a flat top, oh gosh!)

There's our baby girl on the hunt for shells!

Just like her mama!

She kept poking holes in the sand after the water would go down!

This was the view from the hot tub each night, it was heaven.

Seriously, gorgeous!

Our raft!!!

We all pitched in and bought that ginormous raft from Costco to take out in the water! It was huge!

People thought we were crazy. They would stop on the strand and just watch us try to get it out past the waves, it was hilarious...for them!

It was hard to get out there and get everyone in before a wave came.

Depending how the wave hit, you would just fly out. Madison flew like 15 feet in the air!

Lindsay and Heidi got thrown out and hit faces. I got thrown off the back and did a back flip. It was crazy.

But it was fun!!

We lost a couple due to injury and I don't know where spencer went, but we made it!

Then the raft got a hole. :(

Sad day, we took it back. It lasted a solid 2 days. It was harder to get it out there than we thought it would be but when we finally got it, it was so much fun!

My fav, boogie boarding!

The brothers and I

Catching a wave together like old times!

baby!

I love that place, we had so much fun, it was nice to get away and be with the whole fam, even the New Yorkers come out for a trip to the west coast!

thanks again mom and dad ;)

California

2012-07-16T15:23:00.003-06:00

Here are pictures from our family trip to Oceanside, CA in May this year.

It was a BLAST!! We stayed in nice beach house that fit all of us for a week.

Oh, I could live there, seriously. I love that place so much!

[okay serious picture overload ahead]

oceanside pier

On the coaster going to San Diego for the day to go shopping while all the boys fried at the baseball game.

Sassy!

Girls lunch!

love my baby cakes!

clearly I have a weakness for beach sunsets.

Eating dinner at Ruby's on the Pier! This is 1/3 of the crew :)

Junior Seau-the NFL player died 2 days before we got there, his house was one door down from ours. The first weekend we were there was insane!

The NFL Network and a local news station is standing on our deck filming! It was really cool!

They had a big paddle out in honor of him at 12 that Sunday, anyone who wanted to could paddle out just past the waves, everyone got in a big circle, held hands, splashed the water. There were 3 helicopters, boats, it was crazy.

This guy with the camera is a photographer for Times Magazine.

Spencer and Mad went down with the crowd for a minute.

My brother in law, Chris, found the hat at the telescope inside the house haha!! He had to try it out!

Then I had to try it out :)

It kind of went with the outfit okay.

The kids loved the sand!...

....especially my kid.

Spencer and Mad found these shorts at H&M (yes they go shopping with us) that look like cut off jean shorts with holes in them, but they are swimsuit material, so we got them and got one for my brother Tanner, so they could all wear them, haha!

These girls are best friends. Blayke loves her cousin Sadie aka "adie"

B liked the water :)

The hot tub at the house!

View from the hot tub at night when the big kids get in! I love that view!!

The peeps that made the trip happen!

My dad!

My mom!

Thank you so much!!!!!!

Let's never stop this tradition mmk!

going for a light jog.

Playing Minute to win it games!!

Blayke doing some light racking in the house since Chris is vacuuming. :)

Tanner chasing someone with seaweed. This happens every time, but usually it's me he's chasing. Thank goodness for kids.

Tucker got in on it too!

[i know you can't believe it but....to be continued...]

Spartan

2012-07-02T13:23:00.000-06:00

Spencer, my brother Madison, and Spencer's brother, Jason did the Spartan Mud Race this last weekend in Midway.

They did the relay, 4 miles each, while these crazies below did the full 12 miles on their own...

Jason getting back from his leg of the race!

Mad and Spence before the race, nice shirts boys!

[tramp stamp]!

Mad on his first obstacle, they each had about 7 obstacles to do.

[Mad's in yellow]

Jason covered in mud!

Mad finishing his leg of the race

Next up, Spence!

Officially Spartan.

[Spencer's off to his first obstacle-he's in the blue- climbing on his hands and knees on mud and rocks under barb wire.

[spencer's knees the next day from that obstacle]

He shot a gun and hit the target, he was a little excited! If you can't do an obstacle, you have to do 30 burpees. We were so glad he made it!! A lot of people we doing burpees at that one.

[okay, he was really excited!]

They all 3 finished together.

[notice all the people in rolling in the mud under the barb wire, there were so many people in there it looked like something from a scary movie]

es spideyman!

Finishing the rolling under the barb wire, now mud pools.

DONE!

They made it!

They did great! They all finished, no injuries, we we're so proud! Online the Spartan race made it sound like the worst race in the world-if you don't get hurt you're lucky. Just to go watch Heidi and I had to sign waivers that said we could get hurt or die from watching. The spectators also had to pay $10 each to watch, lame, oh and pay to park. It was so worth watching, it was really really cool! We didn't know girls could do it, we were surprised how many girls were out there. The guys already have it figured out for us next year :)

They had outdoor showers set up but there was about 50-70 people waiting, not kidding, I suggested going to Deer Creek Lake that was right there to wash off.

You can see the mud around them!

We went to eat and went home, they all had naps and I took miss B to the pool since we had been gone all day.

She's getting so big and loves to swim around with her floaties on!

Lately...

2012-06-10T23:05:00.000-06:00

We have been so busy lately, I'm not sure what happened to the month of May.

We went to California with my family for a week to stay at a beach house, it was so, so much fun and so relaxing.

On the very last day, in fact on the day that we were supposed to leave, Blayke had 2 prolonged seizures back to back, each lasting 20-25 minutes. We spent the day in the ER, then went to San Diego Children's Hospital where we stayed the night.

Here is what happened...

Blayke woke up around 7:30AM (early for her) sounding like she was trying to throw up. Luckily she was in our room since we were on vacation, I immediately woke up and took her into the bathroom, thinking that she might be sick. Nothing happened, but she seemed a little 'off'. I went and sat down with her on the bed, she started staring off to the left, but she was able to respond once. I held her, and couple of minutes later she started smacking her lips.

Her head was to the left again, and then her eyes fixed looking up and to the left. I stood up and said to Spencer, she's having a seizure. Right as I stood up her left leg started twitching. We ran into the bedroom where my parents were and laid her on the bed. Spencer ran to get my brothers and they gave Blayke a blessing.

By that time I was a mess, she was getting worse. Her right leg had started now and her left arm. We had her flat on a pillow and got in the car. My mom called 911, they told us to pull over and they would come to us.

We pulled into a Rite Aid parking lot, by that time, her whole body, including her mouth was twitching. I just held her on the pillow while everyone else was trying to let the ambulance know where we were. The fire truck even passed us with it's siren's on. I kept asking where they were, my dad told me that it would be okay and that it was in the Lord's hands.

Finally, the ambulance came. The paramedics got her in the ambulance, they were able to stabilize her. (actually we found that she had finally stopped on her own).

The seizure lasted 20-25 minutes by the time she stopped. Usually seizures last seconds to minutes. I knew that if was more than 2-3 minutes to call 911. The paramedics asked me some questions really quick, then I got in the back with them to sit by Blayke and we went to the ER. Spencer and my parents followed behind.

Blayke was so out of it, but kept saying mama and dada on the way there.

It was heartbreaking.

We got to the ER, I walked in with the Paramedics and Blayke on the bed, as soon as we got inside I looked at Blayke and her eyes started going back and forth. I told the paramedics and the nurses hurried and took her into a room. It was another full on, prolonged seizure. It lasted about 20-25 minutes again.

(which is unreal). They kept giving her .5 ml of a sedative type of medication (ativan) to make the seizure stop.

She wasn't stopping, they ended up giving her the medication 5 times before she stopped. She had a lot of medication in her. They also gave her anti seizure medication (keppra and dilantin) to prevent any more from happening.

She finally stopped and started saying mama and dada again. She was very confused, and so out of it. I just tried to be as close as I could to her to comfort her.

After Blayke was stabilized they did a cat scan on her. They did the CT scan to confirm her previous injury (stroke) and to make sure there wasn't a bleed or anything else going on, which there wasn't, thank goodness.

They also did a lung x-ray, just to see if there was an infection. Which we knew there wasn't. The Dr at the ER wanted to do a spinal tap, take liquid from her spinal cord...um no thanks. Even the ER nurses told us she didn't need that because we knew she didn't have an infection.

I was asked so many times I was asked if she had a fever, runny nose, cough, any sickness at all, if she had been around anyone that was sick. No, she had not been sick at all! I know what a febrile seizure is and she didn't have a fever, that was one of the first things I checked that morning. She was on schedule with naps, bedtime, etc, yes even for being on vacation, she did great with staying on schedule! She was perfectly healthy.

I think I got a little frustrated because there is nothing that triggered these seizures. We know that it was because of her stroke and that is where they came from was that part of her brain, but there was nothing that caused them to start.

It can happen at any time, anywhere, that is scary.

They wanted Blayke to be observed for the next 24 hours, so the transport team from Rady's Children's Hospital in San Diego came to pick us up in the Carlsbad ER. Blayke slept the whole way down (about 30 mins).

Like I mentioned earlier, it was the day we were checking out and supposed to be going home. My brothers and their wives and my parents packed the whole place in a hurry before we went to San Diego. I was going to ride in the ambulance with Blayke, but it was just in the front seat with the driver, not in the back, and Blayke was already asleep (i really didn't feel like riding with some guy and making small talk right then), so Spence rode in the front seat of the ambulance and I rode down with my parents. Which actually worked out because they brought me some clothes to change into since I was still in my sweats and a t-shirt.

We got to Rady Children's which was very nice. Blayke was still hooked up to everything and got even more things put on her.

They put her in the Critical Care Unit of the hospital, they wanted her there overnight. She was so out of it that she slept a long time.

While she was asleep my mom and dad stayed with her while spencer and I walked across the street to the Ronald McDonald house to get something to eat. It was about 2 by then, and we hadn't eaten yet. There was hardly anything left, rice and corn, but it was great. Bless the Ronald McDonald house and it's volunteers. It's so nice when you are out of town and going through a medical emergency that there are places like that where they will feed you. It's just one less thing to worry about. (I added that to my list of places I would like to make a donation to later in life. And I want to volunteer there) Anyway, after we got back, my parents went to find a hotel room for the night and Spencer took a nap, Blayke was still sound asleep.

That night was horrible. She couldn't sleep, she was very irritable from all the medication. She hadn't eaten since the night before, she was so unhappy. She wanted to be held, she kept pointing to the door and saying go. :(

We put a chair right next to her crib where I held her for most of the night. She kept getting tangled in all of her wires hooked up to her. She had 2 IV's, monitors all over her chest, etc, it was a mess.

Finally at 2:30 AM I was able to put her in her bed and she stayed asleep. I slept on the chair next to her and we were up again at 5:30AM on Sunday.

They wanted her "sleep deprived" for an EEG so I was supposed to keep her awake. Keeping a 2 year old awake and somewhat happy or even just content when they are so irritable and hooked up to a million things is just about impossible.

They told us the night before we could go for a walk in the wagon but in the AM they still wanted her being monitored and her IV's in, so that didn't work. I held her and we both fell asleep, I didn't care, her going to bed a 2:30 was not a part of the "sleep deprived" plan! We didn't sleep very long.

The EEG was supposed to happen at 9, it didn't happen until 11:30.

After the 30 minute EEG, she was finally able to eat and drink, her first time since Friday night. (they didn't want her eating in case they decided to sedate her, which they didn't)

[hooked up for the EEG, another 'ponytail of wires']

[she did get to sleep during the EEG]

[finally eating]

We were able to leave that day! The Dr knew that we were here from out of town and that we had a 12 hr drive ahead of us. We were glad since Spencer had to get home for work at least by Tuesday, going in we had no idea how long we would be there since they kept mentioning in a few days. It was around 1 when we finally left. They made sure Blayke had plenty on anti-seizure medication in her for the way home, we got her RX filled before we left. We got home at 1AM on Monday morning. We kept driving because Blayke slept in her seat and was very content.

It was good to get home so we could follow up with all of her Dr's, but it was also very hard because it didn't happen here, so they had no records on anything. Everything is still being sent over from San Diego. I am on the phone all the time with someone here, or in San Diego or the billing dept.

Monday, Blayke could not walk, it was like she was drunk, in fact that is what the Dr told us the day before that she is basically drunk from all the meds. She could not keep her balance at all. She wanted to walk, but would take 2 steps and fall over. It was scary. It was hard. I think I called every single one of her Dr's here that day. I kept thinking that she shouldn't be out of the hospital yet, but being home is better than being hooked up to everything, even if you can't walk.

[Monday morning. Took over her babies pacifier]

[got a smile!]

[bruise on her arm from one of her IV's]

Luckily we found that she liked being pushed around the house in the stroller, it was a lifesaver. I can't even describe that day, just imagine a drunk, irritable, 2 year old. It was extremely hard, luckily I had my mom who helped a lot, I don't know If I could have made it all day by myself.

The next day though she was already doing much better, by Thursday of that week, the meds were gone, we had seen her neurologist, PT, OT, talked to her Pediatrician, and everything was okay. The seizures didn't do any damage-which was what I was so afraid of, besides everything else-was that all of the hard work we have put in would be gone. She is doing awesome, no delays, nothing!

She is on anti seizure medication and will be for 2 years, which I am not thrilled about. She has been on Keppra, which is supposed to make you tired, for her it made her wired, she wasn't sleeping well, (we all know Blayke is a sleeper), she was getting this attitude, it was tough, it just made her irritable.

Finally (they always want you to wait a few weeks before switching meds) but after I called her neuro 2x and her Pediatrician called, we got the go ahead to start weaning new medication. The night we started it, she slept through the night! She takes her naps again, she is so much happier and herself! We noticed a huge difference, she is still on Keppra since we have to slowly change, it's been a week with adding the new med, we get to up the dose, and next week we'll get to start decreasing keppra. Yay!

[A week after, what a difference! She is back to her happy self!]

This was one of the hardest things we've ever experienced.

We didn't know what was going to happen, it was terrifying.

We love her more than anything, we are truly blessed to have her, we are beyond grateful for this little girl.

[loooove that little foot!]

....................

Sooooo besides all of the appts we've been to, I've been super busy with my new calling, which I love! I'm in the Stake Primary Presidency (2nd counselor) I was called about 2 months ago, it has been so fun! I love the ladies I serve with and the wards that I am over! It has been busy though, I've been to so many ward conferences, I've had to speak 2x in 2 different sacraments, one was ours, the other I had never been to. (We speak with the high councilmen, I have a partner and everything, who is the nicest person and always has his talks done way in advance).

Next week we are having our big annual Primary Leadership Training meeting with all of the primary presidency's in the Stake, it is going to be great, not to mention fun! I get to be over music at the meeting, so I've been making and coming up with all sorts of things for the primary music leaders, which is so fun. Let's face it, one of the best things about primary is singing time right?!

So any time I'm not busy with all the medical stuff going on I am working on primary.

So grateful Blayke is taking naps again, I need that time! Who doesn't right?!

Crazy, but good crazy.

Here are a few pics from the last couple of weeks....

[memorial day]

[waiting so patiently at the Dr's office, reading a book, waiting to get her blood drawn]

[showing me her 'bracelets' from getting her blood drawn! They only did one arm but as soon as they put it on, she pointed to her other arm to have it put on! They actually found a vein on the first try, Blayke didn't even cry, just said ouch and she was over it, tough girl!]

[laying out by the pool!]

[our sweet sweet girl, i love you cakes!]

Infant Stroke Awareness

2012-05-31T21:49:00.002-06:00

Today is the last day of Infant Stroke Awareness month-I'm slacking for not putting this up earlier. But, I did put on the Baby Stroke blog before May even started, so that counts as something right?

Then.......May happened.

...............................

This video is a montage of Infant Stroke Survivors and facts about infant stroke.

What I love about this video, besides one super cute little girl whose name starts with Bla.... ;) is that there are infant stroke facts spread throughout the video. I love that.
I know people don't know what to say, it's easy to shy away from, so these facts are great and so helpful! Even to me!

Seriously though, how cute are these kids?

They are survivors, fighters, they face obstacles every single day and will for the rest of their lives.

They are strong.

Bless them.

the anniversary

2012-04-30T15:39:00.001-06:00

4.16.12. Downtown Salt Lake. The Garden Restaurant with an amazing Temple view.

Walking City Creek. Walking Temple Square. Fried Pickles. Fresh flowers on the table.

Great company.

delish dinner.

did I mention we had fried pickles...um amazing.

the view from our table, it doesn't get better.

love city creek mall!

It was a great night out just the 2 of us!

Basketball and botox

2012-04-10T11:37:00.000-06:00

Last Wed night we went to the Suns game...who played the jazz and won! Spence got a bunch of people to go, we sat in the cheap seats and had a great time.

Blayke had botox that morning but did great at the game, she clapped and got excited when we did, you wouldn't have even known she was a little drowsy, she did great.

The injections went well, but she did have a hard time waking up. They don't let me go back until she wakes up, so she wakes in a strange place with a bunch of nurses around. But then I get to come back and hold her for a little while. She had some Gatorade and goldfish while they checked her vitals one last time and we were ready to go!

I took her to Wendy's afterwards to eat since she wasn't able to eat that morning before the anesthesia. She was so happy to eat, and I think even more happy to be done at the hospital!

Conference

2012-04-02T15:53:00.001-06:00

There was a talk Sunday morning given in General Conference that really hit home for our little family. It was given by Elder Ronald A. Rasband.

"For reasons usually unknown, some people are born with Physical Limitations..."

Elder Russell M. Nelson

It was one of those where I felt like he was talking right to me. It was exactly what I needed to hear.

On Wednesday, Blayke is going in for her 3rd round of Botox Injections at Primary Children's. Our therapy schedule is once again full with at least one appt almost daily until we decide with the therapists/Dr's to decrease.

Last October, we had our first "therapy break" or any type of break for that matter, since finding out about her stroke. We had never experience a break before. During that time, I didn't realize it, but without the constant appointments and therapists making me face our new reality, I went into denial.

I literally told myself (and others) that the PT's OT's, ST', and the dr's were probably exaggerating the care that Blayke needs, because you know how some (only some) can be, they want you to keep coming back for any little thing. I went to a Chiropractor one summer when I was young for a bad roll over car accident my family was in. I remember at the end of the summer how the dr said I needed to keep going for all these different things that I didn't need. I felt like, or maybe I was trying to convince myself, that that was where we were with Blayke. Not that I wanted to end her care, but I just thought that we didn't need to be doing all of it.

When she had Botox done last Dec and we started up our 'intense' (as they call it) therapy sch again, it was really hard for me to get back into it. I was fine going and doing all of the appts, but I was just so tired of being told how she is delayed, what we need to work on, what we needed to be aware of, and how her future will be so different than what we imagined. We were also hit with new realities such as possible arthritis in her left knee at a young age. It's exhausting. It's emotionally draining. I was so tired of facing reality.

So, I'm planning (not hoping, definitely planning:) that this talk that was given on Sunday will bring me back up to where I need to be, strong.

"A perfect body is not required to achieve a divine destiny, in fact, some of the sweetest spirits are housed in frail frames.
Eventually, the time will come when each spirit and body shall be reunited again in perfect form, both limb and joint shall be restored to it's proper frame...."

Elder Russell M. Nelson

Recently

2012-03-15T12:06:00.001-06:00

I had a little birthday last month, Speney spoiled me for the whole weekend. We went to Park City and stayed at Zermatt Resort with our friends. We went to the Olympic Park and watched the skeletoning, which is pretty intense! So cool to watch something like that in person.

This was our bed, holy smokes, I felt like a princess! We all laid on that bed and watched TV all Friday night then finally went to get some dinner at 11ish in Heber, which is hard to do, dominos stayed open for us :) (our girls were staying with their grandparents)

The next day we went downtown PC then headed home, Blayke was still at my parents and we went to see the Vow! We went to get missy the next day. I had a great weekend, thanks for spoiling me speney!

Last week, Spencer came home from work with a big smile on his face, and surprised me with an iphone! I was totally surprised, and super excited. I love that it syncs with my calendar on my macbook so now I can schedule everything on my phone calendar and sync it with my computer so I stop double booking us! Seriously, I know it's lame, but we schedule so far ahead, we're already scheduled thru May.

The winter this year has been sooo nice! We've been able to take out B's tric and go for walks. [notice her left hand and foot-they have koband [like and ace bandage] to hold her hand open and holding on and to keep her toes on the petal. The tric is awesome for OT and PT for missy. We're trying to help her to lift her foot up correctly when she walks (lifting her toes aka: flexing her foot), she gets that motion on the tricycle, so it's awesome! I love when we're doing something fun for her, but it is also therapy.

Speaking of therapy, Blayke had a 'dream day' at therapy a couple weeks ago, she got to wear all those necklaces and bracelets!

We had kineso taping done.

[it's also like an ace bandage but it is sticky and provides some stretch, so it encourages a certain movement]. She had her arm and leg done, it's easy stuff, stays on for about 5 days and we take it off in the bath.

The godfather came for a visit bearing chirstmas and bday gifts. He does too much, he totally spoils her!

One of the gifts-new vans! Seriously, adorable.

wearing dad's hat :)

It may be hard to believe but yes, she did have a hair cut, (those blonde locks are really hard to see in there), her hair looks much thicker now and we can still do piggy's :)

We went to a trampoline gym with some friends. I was hesitant to take B, wondering how she would do, but it was only $2 so I figured we'd try it. She actually did really well, I was so proud of her.

And get this....Bentley from the Bachelor is part owner! I walked in holding Blayke and saw him, then he looked at me....I honestly think I froze. I don't know what to do when I see someone who is famous (or had their 15 minutes), I kind of freak out! I was pretty proud of myself for holding it together though. I used my friends baby as a decoy to take this picture, [haha] ugh, i need help!

I'll admit, I was a little star struck. Sad, but true ;)

That's him in the middle, if you can't tell, he's going for the grunge look. :)

Our ward put on a 'night in paris', Spen was part of the 'tour de france' he's on the far right end...

We got our faces painted.

Spencer spoke in a french accent all night after getting his mustache!

Good times!

bring on summer

2012-03-06T16:07:00.000-07:00

We're a little excited for summer around here!

[which really means that mommy got a little excited at Target and started buying summer clothes]

In 2 months we'll be back in sunny California where Blayke can wear those cute sunglasses all day long. :)

we live with a princess

2012-02-26T19:58:00.000-07:00

like i said, princess.

The Birthday Girl

2012-02-01T21:50:00.001-07:00

My baby is 2!

It seems like just yesterday I was like this..... and you were like this.....

Where does the time go? Seriously.

To celebrate her birthday, which was last Saturday, we had a small little party on her birthday. How could we not, when the big day was on a saturday?

Her mini cake!

We had pizza, salad and treats

pink zebra cookies, how does one resist making their for a baby girl's birthday?

gotta love pinterest for all the ideas ;)

Blayke was SO happy to have everyone over, she loves playing with everyone. When she sees her cousins, she does this little scream of excitement and runs around the house. Seeing her so happy makes it so fun.

Her brand new birthday present from grandma and grandpa flake- a red radio flyer tricycle!!!!

this thing is awesome! I love love that it has the handle so we can push her and steer. We are going to have some fun walks in the future. And best part is, it's therapy approved, both her pt and ot suggested it would be a good gift. Grandpa even put the bell on the left hand side so she has to use that hand to ring it...always thinking!

Blayke got some cool new presents, we got her some new shoes that she needed anyway and a fun bath toy.

Grandma made blayke an ivory and pink minky pillow case, it is soo soft. She sleeps right by it every night!

Showing everyone her pillow. [tanner and lindsay even came down from pocatello and stayed with us for the weekend, we had so much fun staying up late, playing games, and sledding]

her own mini cake

pushing her best little friend on the tric

In our neighborhood/ward there are 6 cute kidlets that all have birthdays within a few months of each other, so we had a combined party for them at our church

[shan-the invite, so cute]!

The birthday cake!

There was even a bounce house!

All the kids eating cake!

They had a great time!

I love you baby cakes, we try not to spoil you too much, but let's face it, we can't help it, you deserve everything and more!

ice skating & sledding

2012-01-26T21:31:00.000-07:00

Before christmas we went ice skating in downtown salt lake, it was so cool! There is an outdoor ice rink in the middle of tall buildings, it was like a mini central park in nyc, okay maybe not, but it was so fun!

the girlies :)

Spence had to work, so my mom was my skating buddy! Blayke stayed with grandpa and played with her cousin.

by the end, lindsay and I were pretty much professionals :)

[okay, i was holding onto the wall, hehe ;)]

We played tag while we were there, and crack the whip, haha. It was fun until I was soooo close to tagging tanner, we were both booking it, and ate it on the ice. My toepick [cutting edge anyone?] caught the ice, and i fell flat on my stomach. My right hip and left knee took the fall, and i had the wind knocked out of me. A little blood, [from my hip, it sliced open from the fall], 2 huge bruises, and a painkiller later I was up and playing dance kinect later that night. As for the ice, I was done after that, i'm not going to lie, it hurt!

i think ice skating should be a new tradition, yes??

A couple weeks ago it finally snowed on MLK day. Spence had the day off, so we went sledding at sugarhouse park. The snow, obviously wasn't that great, people had been there all day sledding so it was worn down, but still fun for us.

We finally know how to dress warm, yay us! We're pretty happy about it.

my little peanut butter in her snow gear!

dada and miss b going down the hill

B and mama going down!

uncle mad dawg and blayke going down!

We're excited for more snow [or as Blayke would say, 'no' while pointing to her nose]

Hopefully the sled that the grandkids got for christmas holds up for us big kids ;)

tea party for 1?

2012-01-15T10:10:00.000-07:00

before church last week miss b had a mini tea party.

[love her face in this picture, does it get any sweeter?]