Tyson's Blessing

We blessed Tyson this past Sunday.  September 11...not I didn't plan that day on purpose just happened to be a good day for our famlies to overlap and be here the same day.  Both sets of grandparents and Aunt Julie were here.  We blessed him at home due to Gracie having a low ANC (lack of ability to fight infection-low immunity).  So the Bishop came over about 1:30 and Todd gave him a very nice blessing.  In my heart of hearts I wanted the perfect pictures of him and with  Gracie sweetly holding him and a cute family picture...turns out he didn't want to show us much of his blessing outfit b/c he  would cry unless bundled up and in someone's arms.  Oh and as for gracie wanted to pose for a picture...well let's just say I'm learning to let some things go!  We got some pictures of the reality of the moment though:)

Right after the blesing...he was a perfect little guy during the blessing.  Cried before and after but not during.

Gracie with Dad after in her pretty dress

Not too bad of a family pictures...except the special boy that the pictures taken for is hiding.

With Grandma and Grandpa Bucher..the only way we could get Gracie in the picture!

Not sure if you can count her as being in this one haha!  Cute girl!  We love our real life babies that help us realize what life is all about.  With Grandma and Grandpa Hurst and Aunt Ju Ju.

Great picture I think of his sweet smile...of course Gracie's leg is in it!

She does love her little brother!

Trying to give him her doll's bottle.  Looks like he wants it. 

Gracie with Grandma B

He just wants some "peace".  This was  from our mock blessing day photo shoot last night when he was being happy.  At least it shows the full outfit and he's not crying! We are so grateful to have Tyson in our family and can't wait to watch him grow up through the years.  We love you Tyson!

Tyson update!

A quick update on Tyson...he rolled over from his stomach to back last Saturday night twice!  He was born strong! He was just over 5 weeks...a week earlier than Gracie did as a baby.  He has been pretty fussy at times and has an incredible set of lungs he can sure make a loud cry when he wants to.  He weighed in at 11 lbs 8 oz Tuesday evening after we got home from clinic.  I left a message for the advice nurse b/c he's been fussy, gassy and had some projectile vomiting the past month.  But at midnight the night before clinic I thought we could finally go to bed when I put him asleep in his bassinet.  A few minutes later he had spit up ALL over the sheets, the bassinett and himself.  So the next day after clinic I finally called to see if they had any advice.  I left a message for the advice nurse and went in to take a nap with Gracie...she's usually really restless after chemo...but exhausted.  When I got out I got a call from Todd saying the nurse had called him very concerned that Tyson was projectile vomiting and they needed to see him that night.  He of course was wondering what was going on....I told him nothing new just the same thing that's been going on for a month.  I called the nurse and they really wanted to see him that night so I packed up and headed for round 2 of Dr for the day.  Turns out I was right about the problem...I still have an overabundance of milk.  6 weeks old and I'm still producing way to much milk.  The Dr was totally amazed.  She could not believe I had too much milk rather than not enough with all the stress of having Gracie with cancer.  I did find out a little bit more that has been helpful...ideas to try.  He's been getting too much foremilk so it causes orange like diapers in the morning because it doesn't get fully digested b/c the low fat milk goes through quickly without taking time to digest.  He's also more gassy b/c it doesn't digest properly..he's always hungry b/c he's not getting the high fat milk.  Oh and my dairy intake is limited to see if that helps the gas...if you know me that's the hardest thing for me to limit I LOVE milk and pretty much anything dairy!  But...if it helps him it's worth it.  I guess we'll see.  He's a lean little guy...but gaining very well and he's in the 75-90th percentile and has been steadily since birth.  I would say he's been fussing less since I've been trying to give him less foremilk and more of the hindmilk. 
Tomorrow he'll be 6 weeks old!

Sleeping

Yawning

Smiling...he has really enjoyed Aunt Julie holding him.  I hope I can give both the kiddos enough time once it's just me and my babies!

Gracie update

We made it through week one of steroids! And we are halfway through our week break.  Nothing like the first phase...but a bit of insomnia a couple days with little or no nap and some waking at night.  Eating super frequently but not as much as the first month...and very particular.  Seemed like she only ate cottage cheese, noodles, mac & cheese and rice.  Nothing else comes to mind but I may be missing some.  We have had a lot wetter diapers and wet through several including nighttime diapers at night.  We have had some meltdowns and I like to call them "steroid tantrums" but overall she has been much happier than expected so I can't complain.  And we eventually got a better system for getting her to take her meds.  Strawberry syrup instead of chocolate and distracting with a favorite movie...followed by an intense clapping session by everyone present...except Tyson. 

Tuesday Gracie and I went to clinic and Grandma B stayed with Tyson.  It was nice for me to have some one on one time with Gracie even though it was at clinic.  We got there and I was promptly reminded why holidays are no longer something to look forward to.  The waiting room was PACKED we could barely find anywhere to sit.  And since Todd still has to put in his hours for the day doesn't seem like much of a holiday...but I suppose we'll just appreciate holidays more in the future.  We waited for about 45 min in the waiting room and luckily she was more subdued and wanted to be held most the time since there wasn't much for her to do with all the kiddos in there.  She wouldn't be weighed without her blanket...so we weighed her with it and wasn't to thrilled about having them get her height.  And she did NOT want to be in her room at all.  So we walked around the hallways over and over (correction I walked and carried her...she did not want to walk-very out of character for her.  We finally found a little car that I could push her around in  and I have no clue how many laps we did while waiting for the nurse.  The crocodile tears were pouring when they accessed her port.  She was MAD...M-A-D.  We got it in and hooked her zofran up to the car and did a bunch more laps around the clinic.  Then she wanted to go in the room and we watched Nemo while sitting in the car for a while then resorted to sitting on my lap thankfully when she wanted to get out and I was tryign to hurry and unhook the meds while keeping her from deaccessing her port.  We got the meds and got deaccessed (which she was pretty mad about again) then came the meltdown.  The nurse trying to be helpful took the car out of the room along meds and she started screaming and crying and couldn't be consoled.  Finally I calmed her enough to change her soaking wet diaper and thought we would pack up and go home.  When I put her DVD player and nemo away...another meltdown.  The nurse Grace came in and brough stickers and got her some salty crackers and a big girl cup of water.  That did the trick and luckily we could go home after that as long as she had some crackers to eat. 

Clinic stats (somewhat decieving from the steroids)

Weight: 31 lbs 10 oz.

ANC: 5.7

WBC: 8.0

Hemoglobin: 12.7

Platelets: 468,000

Should  be a stark contrast this coming Tuesday when we go in...we anticipate her being neutropenic.  Actually she could be now we just don't have a test to prove it.  She has done really well with treatments over all.  But Tuesday night we proved once again that parents aren't perfect.  We forgot to redose her zofran and it ended up in a nice pukey mess.  Poor little sweetie.  And of course Tyson is screaming like crazy during this whole thing.  But I guess on the bright side its' the first time she has vomited from chemo.  Hope to not repeat next week.  So many things to remember and think about all the time...Yikes.  On a sad note...this morning is day 10 when the drs said she coudl start to lose her hair.  I found several hairs on her pajamas and in my hand this morning when she woke up after a LONG night of being awake.  She slept in til about 11...but kept Dad up quite a bit.  Who needs sleep anyway right?

Delayed Intensification-sounds bad right?

Well here it is I've been dreading it for...well since we finished the first dreaded phase of treatment.  This is basically round two but lasts 8 weeks.  Her first day was Tuesday and I am slow in posting...so I better hurry since she's in clinic right now.  She had ANOTHER spinal tap.  Seriously I'm ready to be done with them.  I'm losing count it's either the 9th or 10th.  She did great with the fasting though...she had a two and a half week break from clinic.  The longest yet and going back I think she had forgotten a lot and was much more traumatized by it all again...or so Todd says since I was down with Tyson getting his ultrasound for the worst parts.  Her counts were awesome...probably the last time we'll see the for a while they anticipate her needing a few transfusions this phase...it's part of the plan knock everything out in hopes of taking the cancer with it.  She also had some vincristine and her first dose of "red death" or "red devil" i guess they call it both.  It's real name is Doxirubicin...either way I don't really like the thought of it even in small doses.  It will probably cause her to lose her hair within the next week.  And we had to have the ECHO done before to get a baseline of her heart so they know if it causes any damage.  She'll have to have those every 5 years for life I believe after having this drug. 
Not sure on exact clinic stats this time but her ANC-2300. I think her hemoglobing was 12.5 and her platelets were around 348,000. 

She wasn't really interested in her traditional cup of  noodles after a sedation.  But she was really into the froot loops I found.  She ate the whole bag and of course starting saying and signing more.  And nothing else would satisfy.

She wanted Dad to lay by her of course.

We started the steroids Tuesday night and it has been a REAL challenge this time.  She is bigger, stronger and smarter than before...and has more energy.  She is determined to spit every drop of them out causing much stress for her pharmacist Dad who is very concerned about patient compliance...and the possibily of recurrent cancer from her not getting all her meds it.  We've tried MANY different ways already in just 3 days and so far the best is mixed in strawberry syrup I got yesterday to try.  Her eyes have been looking more and more heavey and darker underneath.  You can just tell that she doesn't feel as well as she usually does, much more lethargic and she's getting the steroid mood swings and irritability. When I look at her I usually feel two emotions very strongly I feel very sad that she has to go through all of this and I just love her so much I just want to be next to her all the time and hold her. 

So this morning I got up at 1 am to feed Tyson after going to bed around 11:30 because I had to pack for both of them for clinic...and to my delightful surprise I had a bit of a sore throat.  Ok I lied I was not happy about it.  So Todd ended up going with his Mom to clinic while I stayed home wishing I was there and that I didn't have to worry about getting her and the other kids at clinic sick...I was told to sleep because of my obvious lack of sleep with a newborn but I never actually fell asleep.  partly because Tyson doesn't like to be put down especially during the day and partly because I couldn't stop thinking about her and how things were going.  So enough about me...she just got home from clinic and I doubt she had much fun.  But she was a trooper again and got another dose of peg asparaginase.  They had to wait for 2 hours after because there is a risk of anaphylaxis...and we have to watch her for a day to make sure it doesn't happen.  Yeah I hate this drug.  No clinic stats they didn't do a blood test for the first time in clinic prob cause we were just there Tuesday and it's not count dependants this next 4 weeks. 

Tyson's miracle

A picture of Tyson lounging on the amazing quilt Grandma made for him.

So it turns out we have had a third miracle this year!  Tyson's right kidney went from most likely not present to a  "possible but doubtful" prognosis for full function and now after his first and hopefully last ultrasound it's fully functioning!  So grateful for the news...it is still located down next to his bladder, but no big deal as long as we're aware and know where to have him wear protection for contact sports and such.  He was a trooper we scheduled it the same time as clinic and I took him while Todd took Gracie to clinic.  He was a champ although he is totally a newborn in the sense that he was constantly startled by the guy touching him with the probe.  Here are a few pictures...  Oh and also he is 4 weeks today!  Seriously where did that month go? 

Always grunting with his hands in his face!

the slew of 3's

Well no there are no longer 3 people in our family...there are 4, but there seem to be lots of other 3's! 

Let's start with our little guy...he is now 3 weeks old.  Can you believe it? 

Last week was our 3rd Anniversary!  Haha I still can't believe all that's happened in 3 years...trust me even in my wildest dreams the day we got married I could have never even considered I'd be where I am now!  Not to mention I have officially spent half of our married life pregnant (that's right folks 18 months is half of 3 years)!  Lots of difficult things have happened...but many blessings too.  Thanks to my fabulous husband and kiddos for a fabulous ride!!  We even snuck out for dinner the night before while Aunt Lori watched Gracie.  I know hard to believe.... especially since Gracie woke up early that morning with a mild case of croup seemed to be gone be evening (phew)!

Gracie's silliness after we got home...she's enjoying her teddy grahams aunt lori got her for the night.

Tyson of course joined us and actually slept until dinner was over!  Something that would probably never happen now...he's been much more fussy lately.

And the third number 3...Gracie finished her 3rd phase of treatment.  Yay...mostly I'm super glad she's done with it, but really sometimes think my heart is being pulled about apart thinking about the next phase.  I'm so heartsick from seeing her suffer so much over the last 4 months that I can't bear to think of what's to come.  But come it will..we start Tuesday if she passes counts and go back Friday and the next Tuesday!  It should be a rockin' good time.  Wish us luck and shoot an extra prayer our way if you'd be so kind! 

I know they are both really similar but I love them both!  Just look at her sweetness and innocence.  I wish we could just fast forward through all these awful treatments.  I just hate the thought of her getting all these awful drugs and treatments.  But...here we go!

Let's see the 4th number 3 is that our 3rd person is coming this week.  Grandma Bucher!

We have had so much great help starting with my sister Angela!  I don't know if any of you have had the luxury of having your own personal Mother/Baby nurse stay in the hospital with you the night you had your baby and the following week...but I'd recommend it.  Especially if you're lucky enough to have it be your amazing big sister.  Thanks so much to her and her family for making it possible for her to come!  And thanks to all my other sisters and Mother who I'm sure wanted to come, but weren't able!  I LOVE you so much!

And thanks to Aunt Lori who just left Friday!  You were a great help and we are so grateful to you for your time and all your help!  We love you!

The last thing has nothing to do with the number 3 but just wanted to post a few pictures real quick...b/c my time is short.  Thanks to all those who helped and participated in the race for Gracie!  I still can't believe that there was actual a race done totally in honor of my perfect little girl!  I wish so much that we all could have been there but since it was impossible here is a picture of sweet little Gracie in her shirt!

Oh just kidding of course I posted more than one.  I can never choose just one!

And how could I forget this goes along with our 3rd anniversary...I decided we should get a bed for Todd and Gracie for our anniversary and we did!  Our very first piece of furniture we have purchased in our married life!  Here's a picture of Gracie on it!

Oh and I have to mention so we don't forget!  Gracie's latest obsession is making piles.  She makes piles everywhere...and big piles full of anything and everything she can find.  It is so funny to watch and she'll put it one place and try to sit on top of it and then in a minute she'll move the whole pile to a new chair or corner.  I really wish I could get a glimpse into her little brain!   Here's a little view of a couple piles...

Well I more than used the time I had available so hopefully I got most the high points!  Hoping this week goes well!

Bath time

Tyson had his first real bath tonight now that his cord is gone.  He loved laying in the warm water...until I started washing the top half of his body then his lungs really got a good workout.  He just looks so handsome I love these pictures of him.

After he got dressed he totally relaxed again and took a nice nap in my arms while we watched Nemo.  It's on just about every night at our house..unless it's Ratatouille (Gracie starts laughing outloud on her own all the time in that movie it's so adorable) or Elf a few or her other favorites

And of course what would be the use of anything baby unless Gracie sat and played in it.  She swings in his portable swing all the time...believe it or not it has stood up to her 31 lbs so far and she looks so darn cute in it we can't resist.  I'll have to get a pictures to post.