Tyson-7 weeks old

We happen to have the genes for big babies who are incredbibly strong from the start.  Tyson beat out Gracie at rolling over by 1 week.  He was 5 weeks and she was 6.  We finally got a video of him this morning rolling over!  It's been a good morning overall...he has been mostly happy and so has Gracie.  The thought occured to me..."this is what life would have been like if he hadn't been fussy and Gracie didnt' have cancer....but I wouldnt' have viewed it this way...it seems so easy for these few hours...but I wouldnt' have understood that".  Yep my view on life is no where near the same as it was 5 months ago and I'm sure that was what Heavenly Father intended so I guess I'm at least learning some of what he wants me to.  Here are a few other ADORABLE pictures of our incredibly handsome little guy. 

yay!

Can you resist that face?  That smile was at clinic this morning!  It was so much better now that the steroids are wearing off.  Actually EVERYTHING is so much better.  She still hated the port access but held pretty still while she cried and screamed.  Other than that part she was pretty darn cute.  She was scaring the nurses...if you've seen her do it you know what I"m talking about if now it's cute.  She puts one hand up and says "Rrrraaaaaa".  And she smiled and blew bubbles and even wanted her temperature taken twice...its' so fun once just isn't enough haha!

Great news!  We went expecting a blood transfusion...and left with NOTHING but a port access and deaccess.  So wonderful!  Even better that means her counts already hit their low point and are on the way back up. 

Clinic stats

Weight 34 1/2 lbs

WBC: 5.8

Platelets: 231,000

ANC: 1100

HGB: 10.8 (up from 8.5 we expected it drop to 7 something)

I'm thinking the angels are surrounding Gracie helping us get through this awful phase as quick as possible.  If she passes counts we only have 2 weeks of the awful chemos...if she doesn't we wait another week to check counts.  It's pretty sure she'll pass b/c she's going back up!  Thank heavens for prayers and answers to prayers! 

Today has been such a GREAT day!  It is almost unbelievable how happy I feel I can't even describe it when she is happy and acting more like herself.  My heart feels like it's jumping watching her blow bubbles, smile, laugh, give hugs and just acting more like herself.  I hate those steroids...you can just tell that it's not her they have so many awful effects.  They're wearing off and we never have to do that high of a dose or that long again!  Yay!  Now to enjoy the rest of my day....and the weekend with a happy Gracie and her sweet brother!

A few pictures

Sunday night "time stopping" moment we went for a walk....all 4 of us and Gracie and Tyson both did amazing.  Tyson layed and slept in the stroller (that's amazing) and Gracie sat in the stroller for the first half and was quietly carried by Todd the last half.  We actually got to "talk" to each other for a little while without screaming kids and it felt Great to get outside especially after having to shave her head that morning. 

Poor thing is SOO tired all the time.  We go into her room to try to lay down she stays for a little while then can't fall asleep and we come back out...over and over again all day.  In between the 2 packs of american cheese we went through in 2 days and more than 10 tortillas and lots of noodles and milk.  Her poop is pretty much white/tan now due to her fantastic diet.  Poor thing nothing tastes good and what she craves (salty) makes her mouth sores hurt.

She spends a lot of time in her super cute jammies now.  If I was going to feel that crappy I'd want to be in my jammies and watch lots of movies...so that's what we do.  Plus she's getting the steroid belly again which i'm sure will start wearing off soon now that she's done with steroids.  This is one of her piles...my heart feels happy when she has enough energy to make a pile.  It's her thing and I LOVE it.  I actually never pick it up cause I don't have the heart to.  Todd does sometimes but for some reason I just can't do it.  It's a sign to me that she felt good enough to make a pile instead of just laying on her bed/couch watching a movie and eating. 

Some of the important items she carefully places in her pile.  My word she is so sweet I just can't describe it.  I just love watching her do anything she enjoys.  And when she falls asleep it's like the worlds strongest magnet is pulling me to her.  I just want to lay next to her and hold and comfort her (although i try to resist b/c it would usually wake her up and she hasn't wanted to cuddled during steroids much at least by me).  THe only thing I don't like watchign is her suffer but I can't stand to not be there because I always want to be there to try to make it better.

Our sweet boy that deals with her steroid induced pushing away his legs while I feed him and she's constantly pointing to his swing when I hold him.  Although he does give out a pretty good scream on occasion while she does or while I'm trying to do somethign for her like feed/diaper change/bath and such.  He is SOO strong and alert for his age.  We love him.  Can't wait til things calm down and we can enjoy him more and give him the attention he deserves.

Here she is right now.  She's fallen asleep in the family room twice today.  Tried over and over again in her bed but never could and finally just wiped out while watching movies. 

Today

1:00 am-Tyson finally fell asleep
1:15-Todd up with Gracie to eat
1:30-finally got my shower for the day before then crashed
4:30-up to feed Tyson-he starts screaming after I'm totally had so I sneak in and tell Todd we need to switch kids...he comes to switch I sneak in she stirs, sits up and finally lays back down...todd comes back in b/c he told me the wrong time for the last dose of oxycodone for her mouth sores...she wakes up SCREAMING "DA...daaa"  Sometimes I think she hates me...but she wants me when he's gone and I remind myself it's not about me it's about her so I shield my little heart and carry on.
5:00 she stays up and wants to eat...eats the last piece of American cheese...meltdown...I tell todd i'm going to the store...he says he'll go I need to sleep...i remind him Gracie wants nothing to  do with me she'll scream the whole time he's gone...I go to  the store
5:30 get home with amer cheese and more noodles...cook more noodles for breakfast before clinic (those are the only 2 foods she will eat right now and she eat a LOT of both)
5:45-lay down
6:30-Tyson wakes up screaming
7:00-he falls asleep on my pillow
7:30-alarm goes off to get ready for clinic...I snooze it
7:40-up and try to get ready/feed tyson/pump and get everything ready for clinic to leave by 8:30
8:30-wake todd and gracie get her ready/fed
8:45-leave for clinic-she screams "daa " for a couple minutes then falls asleep
9:20-get stuck in traffic...there's an accident and a lane is closed
9::50-make it in to  clinic for our 9:30 appt
10:00-screaming through vitals..she gained 2 lbs in 3 days
10:30-nurse acceses port and can't get blood there's  "gunk" or a fibrin sheath blocking it.  Give her a med to try to break it up and we have to wait an hour to try again.  call Todd/ find someone to take Tyson so he can go to work, walk down w/ Gracie to the pharmacy to get oxy.
11:30 -draw blood.  One tube works...second gets stuck tries and tries...finally several flushes later it works
12:30-packed up and ready to head home...we're both  exhausted m mind is half gone...get all settled into care and drive offf...remember I forgot her oxycodone...my parkign spot is gone and every other one.  Get a parking pass and drive up into the big garage park...pack gracie up into her stroller and go back into the hospital up to the 7th floor get drugs go back  to the car and pack up car again.
1:30 -home.feed Gracie, feed me, give her oxy and benadryl...a meltdown...Gracie wants to go to bed....convince her to sit by me and watch Toy Story while I pump
2:30We both zonk out for two hours
4:30-up, we eat, I change her...screams when I change her diaper...sore bottom from chemo/steroids again despite us putting cream on after EVERY diaper change for over a month.  Try to put her in bath...she screams for cheese.  Put a diaper on and feed her cheese and noodles.
5:30-bath...she falls asleep sitting up in the tub.  I have to try to wake her several times before getting a response...wash her and get her out.  Let her air to heal her rash...lay her on blanket to watch movie and pump again. 
6:00 eat dinner while she watches movie, throw in a load of laundry, throw in old blowup clothes/shirt Gracie threw up on to soak, try to clean bathroom
6:30-Tyson comes home....Gracie wants to eat...he wants to eat...she wants to sleep
You get the picture our day in a nutshell!
November hurry up!  We are tired of Gracie feeling so lousy and we're all worn out.  But...we will make it one day at a time

Clinic Stats

Weight: 33 lbs 10 oz

ANC: 1000

Platelets: 223,000

WBC: 2.? can' remember

Hemoglobin:8.5

Scheduled appt to go back friday for transfusion.  She dropped from 11.2 to 8.5 since Friday and the steroids give a false high.  She finished today and the chemo reaches irs max effectiveness Friday so she will be plummeting from now til then.  Then back again next Tuesday for spinal tap/8 hour infusion for hydration and chemo if she passes counts...I'm not sure she will.  I guess we'll see.  Amazing that someone that isnt' even TWO can suffer so much.  I mean I didn't even know what suffering was by that age and she's pretty much a pro and knows better than I do at 25 how to suffer.  Which bytheway I have a hard time realizing I'm 25 most the time.  I know a lot of people say they feel younger than they are...these days I think I've got to be at LEAST 30.  These things don't happen in your 20's do they?  But I guess they do....cause they are.   Tyson is asleep on my chest in the carrier right now and Gracie is totally tuckered out watching Ratatouille next to me.  So exhausted she doesn't care that there's a computer out.  I cannot wait for her to come back to herself but for now I'm just grateful to be able to survive with the two of them until todd gets home about 10:30 tonight.  

Mouth Sores

The happenings today...I discovered some mouth sores on Gracie.  Poor thing...she has been SOO irritable and just miserable.  Hasn't eaten anything but cheese quesadillas and plain noodles (only one specific type of noodle) and some green beans.  Ding ding ding...salt is super painful for her mouth sores.  It's hard to see in her mouth...I noticed one on the left side of her tongue when  she was sucking on her binky then noticed it was all around her tongue and saw one on the inside of her lower lip.  I'm sure there's more but can't see in her mouth without ticking her off.  So I gave her some oxycodone and within half hour she was actually laughing lightly at Winnie the Pooh and having a great time with bubbles.  Best part of my day!!  Holding her while she enjoys some simple things.  Had lots of help today...the Lord is definately watching out for us.  Now please don't let us have another symptom or bad thing to post tomorrow.  Clinic at 9:30 to get her checked...no chemo and her last dose of steroid is in the morning!  So that's the good news for the day!

It's gone

To say the least...today has been a rough day!  Thankfully my little tyson slept from 12:00 til almost 3:30 that's huge for him.  At 3:30 when I was feeding him Gracie was up eating too... I got him settled and went into the kitchen and found this

I stopped counting when I hit 30 hairs on her tray.  The poor thing has been eating her hair and finding her hair all over in her food the past few days.  Here's a final picture of her pulling hair out of her mouth while eating...

Todd convinced me to shave her head after I saw her this morning once again pulling hair from her mouth...hair all over her food...I was pulling chunks of hair from her head...and there were handfuls of hair on the back of her nightgown to name a few places.  I didn't want to do it...but as I thought about it I realized I would NEVER have been ready.  So I steeled my emotions again and gave in...although this time even my steeled emotions involved a bit of crying.  I said all along I wouldn't be the one to do it.  So he did it.  But of course I gave in at the end and helped with some of the spots he couldn't reach and looked funny.  If we were going to shave it we at least had to do a good job.

So instead of being at church where we wish we could have been chasing her around like we would have been before cancer became our new life we stayed home and shaved her head and did our best to satisfy our kids...even though I'm not sure we even did that.  The steroids are really getting to her these last few days...thankfully we're done Tuesday hopefully by Thursday they effects will be mostly gone. 

Probably the perfect picture to show how each of us felt today...Ahhhh poor girl.  I just wish I could take this all from her.  In fact I hate that I have such long hair while hers is gone...Watch out for a drastic change:)

I was telling Todd today I just can't believe how strong she is.  I mean she's doing it...she's battling cancer! I'm not even sure I can consider myself worthy to be her Mother...but I know I'm grateful that I am.  I let her have a nap in my bed today while Dad cleaned up the hair all over hers.  All I can say is I love that girl.  She is just as sweet as they come.

How I feel...

Starting this phase of treatment for Gracie has been something i dreaded as soon as we made it through the first phase.  And now that we're in it I know why.  I want my little girl back.  Not only do I feel tired from the lack of sleep I'm getting with a starving newborn and taking care of a sick girl...one look in her direction or thought about her and my energy is zapped.  It is so hard to watch her feel this way.  I think back on our "carefree days" of going out together everyday and I now haven't taken her out swimming/to the store/playdates/church or anything else indoors besides the hospital for almost 5 months.  To say the least it breaks my heart.  Her bright eyes are not so bright these days...I want my girl back. 

Man I miss that girl.  Look at those big bright eyes...now they are just  worn out, heavy and dark. 

I don't want to watch her suffer anymore.  I don't want to take her clinic and hold her down while she screams.  I don't want to think about every single thing she touches in such fear that she may get a fever and we'll end up in the place she HATES (the hospital).  I don't want to think I should call the Dr when her temperature is 99.5 (that's what the Dr told us Friday when we took her in to have her levels checked for a transfusion).  I don't want to look at her and hurt because she hurts and then hear again that she looks "good".  She doesn't look good...she looks pale, tired and miserable. 
I know we have lots of blessings and good things.  Just had to get some of my real feelings out today!  Hope we get our real Gracie back in 6 weeks (if not sooner)
Oh and I'm tired of having to give her so many drugs every day that she doesn't want to take.  And not loving all the Gracie hairs I keep finding on me, her, tyson, Dad highchair, binkies, blankets...you get the picture. 
Tommorow is another day right?

Clinic last Tuesday

I never seem to be able to post the same day as clinic anymore.  Here's a quick update.
Here stats were approx:
WBC: 3.1
ANC: 600 (scary we hate when it's low the stress level shoots up in a parent when you know your baby can't fight off an infection...it's a very scary time for us.  It was 5700 last week so those awful drugs are doing their job...and it's still dropping so next week may be nothing)
Hemoglobin: 11.5
Platelets: 348,000 (or around there)
Weight: 13.9 kg

She got her 3rd dose of Doxorubicin and another of Vincristine.  Started steroids that night and needed omeprazole, zofran and miralax to counter act the side effects of those nasty drugs.  So we are doing a lot more crushing, mixing and administering drugs these days again.  Can't say I missed it.  We really enjoy not having to prepare and force them into our little girl.  She's not spitting them out though which we're grateful for even though she doesn't like taking them.  We gave her 6 different drugs yesterday and probably the same today.  This weekend she takes an extra one morning and night.  She is losing color in her face more all the time it seems.  We think her hemoglobin is probably dropping and she's getting anemic.  She just doesn't seem to feel well.  The day of clinic she took a 4 hour  nap and this morning she slept in til 10:30 of course woke up many times before that but so tired she just wanted to lay back down.  Her eyes are VERY dark underneath and she's more clingy and wants to be held.  In my mind I imagine this is what many parents think they want their kids to act like other than not feeling good.  Sleep a lot, wanting to rock and cuddle.  I now appreciate very much her getting into things and being a toddler.  I love to watch her run around and see her acting like a normal toddler...what do they call them the terrible twos.  I must say I absolutely love this age and in some ways feel cheated out of gettingt to spend them with her feeling good and not going to clinic and worrying about ANC and fevers and her touching anything at all and then touching her face or putting it in her mouth.   I wish we could have playdates and go out and explore.  But..I also recognize that I wouldn't appreciate those things as much as I would now.  Because they would be normal...I wouldn't know what it would be like for those to not be an option.  So I guess at least it will give me a better perspective for the rest of motherhood.  I suppose if I have to experience it it's better in the beginning so I have this perspective for the rest of my mothering days instead of learning it once  they are mostly grown.  It's going to be a long couple months here...but thankfully things have gone very well overall so far for how many complications we've escaped such as fever and drug side effects.  She is losing more hair of and on but no chunks yet.

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!