Happy Birthday, Jaimers!

Today is my sister, Jaime's, birthday!  Jaime and I are 13 months apart, which meant that I always had a playmate growing up, as well as someone to fight with- oh wait, we never fought, did we, Jaime?  NEVER!  Jaime is one of the coolest mom's on the planet to three of the most beautiful children on the planet (and I'm not just saying that because I'm the aunt- I'm really saying it because Rori Rose still owes me a bracelet- kidding!).

Jaime and I have been through a lot in her 33 years on this earth (wow, Jaime, you're getting old), and there is no one I would rather have by my side then her.  Happy birthday, Jaimers!

Back in the day when I was the taller sister

Osteosarcoma...

Monday, as we were driving home from Juliana's 2 year check up, my cell phone rang.  It was Ryan.  "The vet called about Chili."  "I'm not home yet, so don't tell me the results."  Now, I don't know if Ryan heard me since his phone was crackling, but he then proceeded to say, "I don't really have anything new to tell you.  We just have to decide what treatment we want to do."  "So it's cancer for sure then?"  "Yes, and it's in the ulna which is rare.  They are recommending amputation and chemotherapy which combined could get him to a year.  6 months if we only amputate."  I started to hyperventilate (which is why I didn't want him to tell me until I got home) and told him I couldn't talk right now.  I pulled to the side of the road because I thought I was going to throw up.  I started crying, hysterically and hitting the steering wheel with my hand.  As I was about to yell the "f-word", I heard, "Mom? Why are you crying?" from the back seat.  I realized that I still had my kids in the car, and if I had started to swear, I'm sure that would have been a word they both would have picked up (wouldn't that have been an interesting conversation with Juliana's speech therapist- "Juliana said f*** today. Where do you think she heard that?).  I settled myself down and drove the rest of the way home, still crying, but no longer in hysterics.

My special boy, my best friend, has terminal bone cancer and is in pain.  None of the options will cure him.  What do you do?  Amputation will remove the pain for the remainder of his life until the cancer moves to his lungs and he's already only walking on 3 legs.  Radiation will control the pain but will weaken the bone making him susceptible to a broken leg and is more expensive than amputation.  Chemotherapy will kill the cancer but it will come back and may buy him a year and is the most expensive of all the options. 

If I were to be totally selfish & we had an unlimited supply of money, I would choose amputation and chemotherapy to keep Chili with me as long as possible, but that is only thinking of myself and not him or my family.  I have done so much crying over this decision I am exhausted.  Every night I lay on the floor with him at bedtime and tell him how sorry I am and what a good dog and friend he has been to me.  If you're not a dog lover you probably think I am nuts, but if you've ever met the Chili Dawg you'd understand.

Ryan and I have done a lot of talking about this.  Last night he called me and said, "Chili's amputation has been scheduled for next Wednesday.  I want him to have no pain for the time that we have left with him."  Me, too. Thank you, Ryan, for helping us make the decision.

My heart is broken.

Happy Birthday, Juliana!

Today, my little girl turns 2.  Wow.  It has been a year.  She has come so far since her last birthday!  On her first birthday, Juliana couldn't sit up on her own, she couldn't roll over on her own, she wasn't pulling up, she didn't have any words, and she had just qualified for Early Intervention.

Now, on her second birthday, she climbs, she walks, she runs, she has about 15 words or pieces of words, and has been discharged from the physical therapy portion of Early Intervention.  I'd say that is cause for celebration!

Juliana you are one stubborn little girl.  I think your stubborness is one of the reasons that you have been able to accomplish things that you shouldn't be able to given your caloric intake.  You give me and your daddy (and sometimes your therapists) a run for our money every day!  You have your daddy and your grandpa wrapped around your finger, and I'll add Ms Theresa in there too.

You can be a bully one minute and a charming little princess the next.  You love your brother and love to terrorize him at the same time.  You love to dance, and whenever you hear TobyMac's song, "Tonight" come on, you immediately begin to dance, even in the car.

You love animals, especially Finchy and Auntie Jaime's dog Igor.  Your favorite parent is your daddy, but every once in a while you will choose me.  You love to look at books, especially touch and feel books.

Juliana, we love you so much!  You have come so far in a year, and we are so proud of you and all you have  accomplished!  Happy birthday, baby girl!

Dancing to "Tonight"

Miss Suzy...

Meet Miss Suzy.  Suzy is Juliana's Occupational Therapist.  Our first OT was Ms. Connie, and we loved her to death, but she had to leave us unexpectedly and Miss Suzy took her place in October.  Suzy works with Juliana on her fine motor skills, sensory issues, and moving from task to task.  She definitely works hard (all our therapists do- have I mentioned that Juliana is stubborn?).

Juliana loves Suzy and is excited when she comes to the house.  As soon as Suzy enters, Juliana immediately begins to point at Suzy's giant bag of "toys" because she wants to play.  With Suzy's help, Juliana has started to use a pincer grasp really well with her right hand, she's still developing it with her left.  She can use a spoon fairly well and is starting to be able to use a fork.  She now holds her bottle or sippy cup (yes, she still drinks out of a bottle- don't judge me until you try to feed her yourself) by herself.  She tolerates bouncing on a pilates ball- she used to scream if she was seated on it for even a moment, she didn't like being bounced on it or rocked on it.  She is also just beginning to use her left hand- most of the time it just stays at her side.

Suzy was also the therapist who was with me the day I had to call 911, and I will be forever grateful that she was in the house with me.  She helped me to stay calm and keep my head even though I wanted to cry and scream and freak out because my daughter wasn't breathing.

So, thank you Suzy, for all that you have done for Juliana, especially for being there on that very scary day that is burned into my mind forever.

 

Miss Meghan...

Meet Miss Meghan.  She recently discharged Juliana from Physical Therapy, but before she did that, she worked wonders with our little girl.  When we met Miss Meghan, Juliana was almost one year old.  Juliana could not sit up on her own (you had to sit her up), she couldn't roll over on her own, she wasn't crawling, pulling up, or doing any of the "normal" things that a typical one year old child does.

The first few sessions with Meghan involved lots of crying by Juliana.  Meghan made Juliana work hard and she didn't like it at first.  Meghan would put weights (we called them "pretty bracelets") around Juliana's legs and make her stand up, go up and down the stairs, or crawl on the floor, and Juliana didn't like it one bit at first.  She would scream and scream the entire time.  Meghan usually saved that part for the end, but it paid off.  Juliana is now walking and running.

Learning to stand up last August while popping bubbles

Juliana and Noah loved Meghan.  Both would wait at the front door for her.  Meghan always let Noah participate in Juliana's session, and Noah appreciated that a lot.  At Christmas time Meghan bought both kids Christmas presents.  Now that's generosity!

When Meghan was doing Juliana's re-eval, I knew she was going to say that Juliana did not qualify for Early Intervention.  It made me happy and sad at the same time.  Happy, because that meant that Juliana had caught up- she only has a 20% delay now.  Sad, because in that year we spent with Meghan, she became like a family member and now we don't get to see her anymore.

Thank you for everything, Meghan.  We love and miss you.

Meghan's last session with Juliana

Numb...

We decided to take the Chili Dawg back to the vet yesterday because his limp was getting worse.  We thought maybe he had broken something or torn something.  Neither of us were expecting what we were told.

I was reading Noah his last story when Ryan came home with Chili.  He came upstairs and I could tell by the look on his face that it wasn't good.  I finished the story and looked at Ryan.  "The vet is pretty sure it's bone cancer.  It's in his leg.  We have to take him to an oncologist to confirm it with a biopsy.  It hasn't spread to his lungs yet.  There is a very small chance it could be a cyst but it's highly unlikely."  "How long?"  "Probably 6-8 months."

I felt my dinner starting to come up and I had to leave the room.  I heard Noah ask, "What's wrong with Momma?"  I made it to the bathroom and vomited.  When I came out, Chili was laying on the floor of our room and I buried my head in his fur and cried and cried.

I spent the evening crying and holding the Chili Dawg while Ryan researched the cancer.  It looks like amputation may be the best route, but we will have to wait and see what the oncologist says, especially since it will only alleviate his pain. 

I am not ready to part with my Chili Dawg yet and am still numb from the news.  It doesn't seem fair.  If you're not an animal person you obviously won't understand.  Don't tell me he's just a dog because you won't like my response.   

Ms. Laura...

My daughter turns 2 years old this week.  As we get closer to her birthday, I wanted to introduce you to some important people in her/our lives.  The first one is Laura.  Laura is Juliana's speech/feeding therapist.  She replaced Peggy (who we still love and keep in contact with).  We have been working with Laura for almost a year now. 

Laura sees Juliana twice a week and it is with Laura's help that we are starting to hear more "words" from Juliana.  Laura is one of the most patient people that I know, which is a good match since Juliana is so stubborn.  Last week I got a text message from Laura that went something like this: "Am giving J a break. Was able to get her to verbalize "all done" and "more" 5 times after practically standing on my head".  I had to laugh, because that is what you have to do sometimes when you are working with Juliana.

Laura goes above and beyond her job as Juliana's speech therapist.  Back in October when Juliana was admitted at Children's, she called to check on us and texted me often to check in on Juilana.  While we were in the ER when Juliana had her "seizure", when I finally got service, I had several texts from Laura checking on Juliana and us- she even offered to get Noah for us.  The next day she called to check on all of us to make sure we were doing okay as well.

These are just some of the reasons why we love Laura.  In addition to the above reasons, Laura & Peggy were able to get Juliana past her feeding aversion.  She now eats age appropriate foods.  Now our only problem is getting her to eat enough bites before she refuses to eat anymore (oh, if only I had that problem).

So thank you, Laura, for all your hard work.