Visbal Family

Heartbroken

2012-01-29T19:20:00.000-08:00

We are sad to share that we lost on of our twins on Friday. I went for my normal weekly appointment and ultrasound, and baby "B" was still alive, but the heart rate was very low. We waited a couple hours and the doctor sent me to the ER to get fluids and have some lab work (my urine levels were concerning in the office but they can't do full lab testing). In the meantime, Jeremy came to the hospital to help and keep me company. When we got discharged from the ER, we went back to my OB's office (connected to the hospital), and my OB re-scanned me. Baby B was gone; there was no heart beat.

We couldn't have been more excited to be having twins, and we are heartbroken. I know people say "It's God's plan", or "everything happens for a reason", or "at least we still have one", and although all those are true, we aren't ready to accept those because we're still grieving the loss of our sweet baby.

If you have any thoughts or prayers to spare, we would appreciate them. Most pressing is that baby A makes it through this pregnancy and gets to come home with us.

Jeremy:
Thank you so much. For being my rock through being so sick, and losing our baby. I wouldn't have made it through any of this without you loving and supporting me. I love you!

Prayers, Please!

2012-01-14T22:33:00.000-08:00

I logged on tonight intending to post an update on our babies. Instead of reading me complain about our complications and how sick I am, please take a moment to pray for my friend Courney. She is the strongest woman I know, and her son Tripp was such an adorable fighter. He is now in Heaven and although Courtney (and everyone that has been praying for him for so long) is thankful that he's no longer in excrustiating pain, she's now feeling the pain of arms that are empty of her baby.

Please send Courtney, Tripp and their families any thoughts or prayers you can spare.

Thank you!

(Photo from Courtney's blog)

Catching Up {Again}

2012-01-04T10:00:00.000-08:00

Things are looking up around here! This episode of encephalopathy was one of the worst and longest that Hailey's had in quite awhile, and it lasted through Christmas. Between that and ALL DAY sickness attacking, I haven't been able to do many extra things including blog. Considering Hailey was severely encephalopathic, we had a good Christmas.

This has been a hard year for our whole family with my Grandma/Grandpa both being diagnosed with cancer, Hailey's poor health continuing, etc...so it was nice for all of us to be together to celebrate.

Hailey has recovered just in time to go back to school tomorrow. I'm relieved and sad at the same time. It will be nice to get back into some resemblance of a routine, but I will miss her too! She's also excited for her birthday on Thursday. We have no plans for her birthday, I think we might take her to a special dinner than do her party in a couple weeks.

I will work on a couple Christmas posts this week and (as I always say) try to keep on top of the posting! I hope you all enjoyed your holidays surrounded by people who make you smile!

New Year's Blessing{s}

2012-01-03T18:51:00.000-08:00

TWINS!!!!!!!

Yes, you read that right. We're having not one, but two babies. The fact that we're having twins totally caught us by surprise, but we couldn't be more excited. I have been so sick that I can barely function, but I wouldn't give it up for the world. Pregnancy is no longer a time of pure excitement fueled by blissful ignorance. I think that anyone who has lost a baby or babies knows that you can never jump into a pregnancy the same way again. Every thought I have about these babies is either proceeded or followed by "if they come home". Pregnancy is a terrifying time for us, but we are really trying to live in the moment and focus on the positives; these two blessings that have been given to us.

P.s. I'm going to post an update post after this one. I know, I know. I'm behind yet again!

Update on Hailey

2011-12-12T08:32:00.000-08:00

For those of you whO follow me on twitter, you know that Hailey is "sick" again. Friday we got a call from the school that she was seizing and they called an ambulance. We rushed there and thankfully made it there before she left in the ambulance this time. When I got inside, she was still seizing. Thankfully she was totally out of it, so the paramedics were able to start her iv without holding her down as much.

We got to the hospital, and they got her seizure stopped and then we realized that she was encephalopathic. So, no more seizures, but encephalopathy instead which is worse. Hailey is sleeping very little and has been up till after 4 every night, so we are all exhausted.

Obviously we don't want her to keep having encephalopathies at all, but since she is I'm thankful she had it now instead of over Christmas, since we were in the hospital and didn't get to celebrate Christmas last year.

Thank you for checking in with us, and to those who have sent thoughts/prayers. I think most people think we are "used" to dealing with this so they don't call/text/email/Facebook anymore. If anything, we are even more frustrated now and it's nice to hear that people are thinking of us or praying for hailey.

P.s. Posting from my phone, so sorry for errors.

Please Pray

2011-12-07T16:38:00.000-08:00

I would like to ask for your prayers today. Please pray for sweet Keegan's family, as he went to heaven yesterday morning. He was a sweet, strong boy with beautiful blue eyes. See:

(Keegan and his parents on his wish trip just two weeks ago)

I am glad that he's no longer in pain or suffering, but so sad for Beth and Ryan, because they're now feeling the pain of losing their sweet boy.

Please send any thoughts or prayers that you can spare to their family. Thank you.

A Birthday For Bopa

2011-11-29T17:02:00.000-08:00

The weekend before Thanksgiving, we had a big celebration for my Bopa's birthday. Since we weren't going to be celebrating Thanksgiving as a family, it was nice to have everyone together. Hailey and JJ both LOVE spending time with their Mama and Bopa, and we are so thankful that they're such a huge part of our kids' lives!

Happy Birthday, Bopa. We love you!

So Much Free Time!

2011-11-29T13:02:00.000-08:00

Ok, that was a lie. I just didn't feel like saying "Busy" or "Update", because it's always the same. Our reality is that we're always busy. The truth is, that isn't always bad. Both my kids and I like to be busy, have our days filled, and be on the go. Sometimes we're more busy than would be ideal, but that's just how our life is.

We are all finally on the mend. We have literally never been that sick before. Between my kids and I, we had 2 cases of croup, 3 ear infections, 1 case of strep, asthma flare up and 2 bronchial infections. Thankfully (I guess), the sickness covered a holiday weekend (Veteran's Day) and Hailey had Friday/Monday off school anyway, so she didn't miss as much school as she would have.

This year, our Thanksgiving was different than it normally is. Usually we have really big family holidays at my Mama's (grandma) house. This year, though she was in the hospital recovering from surgery and our whole family kind of made their own plans. So we had a low-key but delicious early dinner at our house with my mom, then we went to see Mama and Bopa.

This year has been a really hard one for our family. For those of you who don't know or remember, both my Mama (grandma) and Bopa (Grandpa) were diagnosed with cancer. My grandma was diagnosed with breast cancer first, went through a lumpectomy, then a double mastectomy and extensive reconstructive surgery. It was really hard on her and all of us...then Bopa was diagnosed with Colon cancer. He had major surgery and is now going through Chemotherapy. They're both what makes our family what it is; and I think it's been hard on all of us (and them). I'm SO thankful that we live fairly close by and have been able to help and see them as much as possible. My uncle has also been going through testicular cancer. I'm hoping that 2012 brings more health for my family, answers for Hailey, and an easier year all around!

So Sick

2011-11-09T16:35:00.000-08:00

We are so sick. I've been sick or not feeling well for over a week. I'm not getting better and I'm over it. Hailey was only sick for one day but is much worse this afternoon. And now jj is sick. Probably the most sick he's ever been. We are all ok but exhausted and on edge.

I'm hoping and praying hailey will be fine. Hopefully her seizures don't flare up, because she had a little cold last time they did and she's much sicker this time.

Hopefully everyone can get some rest tonight and we will feel better in the morning. If not, I'm running away. To Hawaii.

P.s. Jeremy hasn't had so much as a sniffle. Ugh!

Hailey's Conference

2011-11-09T11:10:00.000-08:00

A couple weeks ago, I went to Hailey's parent-teacher conference. I went into it pretty excited to hear what Hailey's teacher had to share. We have always done a lot with Hailey at home and knew that she was doing really well, but we were looking forward to seeing some proof or results of this. Hailey's teacher said that Hailey is ahead (we knew that) by about a year. We have been concerned Hailey's not being challenged or challenged enough since school started, mostly because of the work that was coming come and things Hailey told us. We had let it go (for lack of a better term), thinking that it was the beginning of school-and in kindergarten there's so much going on that we figured it would take a little time to get all the kids used to being in school, get them tested and figure out their levels, strengths and weaknesses. I expressed these concerns in the conference and didn't get much of a response, other than the teacher would be happy to send home some more "challenging" materials for us to work on at home. This was frustrating to me because for one, we work with Hailey at home. Not using worksheets which is what's sent home. Also, it's her teachers responsibility to teach, support, and challenge Hailey (and each student) in the classroom.

I left the conference feeling frustrated. Hailey LOVES school and likes her teacher and we wouldn't want to do anything to risk losing that, but things do need to change. I'll be helping in her classroom next Monday, and I'm hoping that will give me some insight. Then we will be talking to her teacher and hoping for some resolution.

At the conference, the teacher also said that Hailey is a "joy to have in class" and that she hasn't had any behavioral issues whatsoever. She loves helping her tablemates, and is kind and caring. We knew that too, but it's nice to hear at the same time!

Hailey's been doing a homework journal where she writes about something (her choice), and draws a picture to go with it. Her reading/writing skills have taken off, and she's now writing on her own and you can read it! She is so proud of the stories she writes, and loves showing her journal off to her Daddy or JJ. I'll try to take some pictures of her working/her work and post them soon. It's super cute!

Happy Halloween, Grandma!

2011-11-03T20:56:00.000-07:00

Our first stop on the Happy Halloween train this year was to visit my GREAT grandma. Yep, our kids have a great-great-grandma who's still living. A couple years ago she had to move into a nursing home/assisted living center and while she adjusted well, we try to go visit as often as we can. So, even though she's legally blind, Grandma likes us taking the kids dressed up in their costumes (she's been legally blind for as long as I can remember, and I went to see her in my costumes when I was younger too), and we just describe them in great detail. Anyway, our whole clan went this time and we met Mama and Bopa there. Grandma was in good spirits and so happy to see the kids and Jeremy. Here are some pictures of our visit:

Ready to go see Grandma:

They know the way:

Sharing candy with Grandma:

Daddy and his "Best Hailey":

JJ LOVES him some Bopa!:

After seeing Grandma, Mama and Bopa took us out to dinner. The three children (Hailey, JJ and Bopa) had a hard time controlling themselves and listening to the adults, but a good time was had by all!

2011-11-02T08:48:00.000-07:00

Blogging from my phone. I know, I should probably stop apologizing for slack-blogging, because it gets a bit repetitive. We have just been busy. Really busy. We had a great Halloween week with haileys pumpkin run at school, a pumpkin patch with daddy (closed pumpkin patch but more on that later), trunk or treat at my moms school, boo at the zoo with some friends, Haileys costume parade and party at school, trick or treating, and more. Our kids loved it all, and Jeremy and I loved watching them love it!

I have a cold. Hailey has a bad cold which I think might be turning into croup. We got a foot of snow last night, so we are bundling up to either go to the doctor or the pharmacy/store when her doc calls back. Hailey doesn't get "normal" sicknesses very often, so at times like these when she does we are a little out of our element.

I'm sad haileys sick, and we are both sad she missed school today, but I'm loving having a quiet day with my family. We are laying on the couch watching the beautiful snow through the front window, watching movies and trying to keep away from the oodles of Halloween candy.

I am planning to do a new post (heavy with pictures) of all things Halloween when we get back from the doctor or pharmacy.

Enjoy your day and if you're in Denver, stay warm!

Hailey's First Field Trip!

2011-10-27T22:02:00.000-07:00

I wrote and published a whole post, then took it down. So if you "follow" you may have caught it. I'm going to blog something fun instead. Friday, I went on Hailey's first field trip with her. She was SO excited!

We're off to find a pumpkin:

Hailey with her perfect pumpkin:

And she picked on for JJ. A bigger one-because he's stronger, of course!

Our beautiful girl:

If you ask Hailey what her favorite part was....you'd think it was picking a pumpkin. Or maybe playing on the hay bales. Playing with her friends? Nope, it was riding the bus! She had never been on a school bus before and she was ECSTATIC!!!!

I am so, so thankful that I got to enjoy this day with my monkey! I love you, Baby Girl!

SOC

2011-10-16T21:01:00.000-07:00

I LOVE FALL! I love the cooler temperatures, pulling out the jeans and sweaters, the pretty colors, and everything that comes along with it!

We did the Walk to Remember again this year. It was our FIFTH year. I didn't even realize that until one of my friends there (who also lost a baby the same year as Lillie-that's how we met) mentioned it. For some reason, that made me SO sad. The weather was the worst it's been since we started going when Lillie died. It matched my sad mood perfectly. I'll do a full post on it this week, but here's a picture of my favorite freckled girl at the walk:

This week, JJ and I went to a pumpkin patch with some of our friends. I don't usually do extra fun things with him while Hailey's at school because I want to include her, but her class is going on a field trip to the same pumpkin patch on Friday so I figured it was ok. We had a ton of fun, and I loved soaking up the 1-on-1 time with my little monkey. I'll do a separate post on that {hopefully} Tuesday, but here's a quick pic:

We still don't have the results of Hailey's ambulatory EEG, but hopefully we'll get them this week. She is doing ok right now. I went to her parent/teacher conference Thursday, and it was amazing. Her teacher does have a couple seizure-related concerns since this most recently flair-up, but overall she's doing amazingly well. That will be a post for tomorrow {once again, hopefully}.

We're having some issues with Hailey's school, and after talking with my mom (a teacher in the same district), I think we need to take some action. I've been putting it off for long enough because I don't want to cause issues for Hailey. I can't wait to go on her field trip with her Friday!

We have raised $168 towards Hailey's trip between donations and a watch sale. I would love for you to spread the word and refer people to my watch store, Robin's Custom Watches or for Mary Kay sales (email me at robinvisbal@yahoo(dot)com), or to our blog for donations/thoughts/prayers. You can read more HERE THANK YOU so much to those who have donated so far, sent thoughts, prayers, or spread the word!

I think that's it for now. Will post her conference post and pumpkin patch post in the next couple days.

Thanks for reading :)

GOOD NEWS!

2011-10-10T09:44:00.000-07:00

Our favorite favorite doctor has recommended that we take Hailey to the Mayo Clinic, and things are falling into place for that. It's going to be a huge undertaking emotionally, financially, logistically etc.... but we're so glad that some effort is being made and that there's some new hope in our future!

Some ways that you can help:

1) Send prayers or positive thoughts our way. For strength, for health, for answers.

2) Make a monetary donation. All funds collected will go to this trip. Airfare, lodging, rental car, etc... No amount is too small, and every penny counts. There is a donate button on the right side of my blog, and you can donate securely through paypal.

3) Spread the word. If each of you shared Hailey's story with ten other people, we could have this trip taken care of in no time! So steal my words (go ahead, I give you permission) and tell your friends about Hailey's story. Then ask them to tell their friends. Post it on Twitter. Share on Facebook. Send a pigeon out with a note in its beak. Ok, maybe not that last one. You get my point.

4) Consider doing some early Christmas shopping at my store, Robin's Custom Watches (Just click on the purple link). If you don't have facebook but would like to order watches, you can email me at robinswatches@yahoo(dot)com

5) Consider purchasing items for yourself or as gifts from my Mary Kay business. I'm running some specials this month, and we have some items that make great gifts! If you would like to do so, please email me at robinvisbal@yahoo(dot)com

Thank you so much for reading, and for helping in any way that you can!

2011-10-04T07:37:00.000-07:00

Hailey got her EEG taken off, and she is so relieved! She did ok with it, but she was uncomfortable and annoyed after having it on so long. The EEG nurse said it will take up to two weeks to interpret the results and get them to Haileys docs, so we have awhile to wait for (hopefully) answers. I took pictures of her getting it put on, but forgot to take some of the removal process because she was unhappy and needing a lot
Of attention. I will post the pictures tonight.

She is at school today, back in her helmet which she's unhappy about, but we are hoping
For a good day still. "See" you soon!

Hailey's First Day of Kindergarten

2011-09-29T20:46:00.000-07:00

Hailey was so excited to start kindergarten this year. She was most worried about being "fanssssy" enough; and if she would be allowed to bring a purse to school (yes, but you leave it with Mommy and she brings it back when she picks you up).

Here we are before school:

JJ wouldn't let go of Hailey. He either wanted to bring her home with us, or stay there with her:

My big girl ready to go:

JJ actually asked to have his picture taken; this is what I got:

Getting dressed for school: Hailey was anxiously anticipating her first day; Mommy was crying. Driving to school? Hailey was excited; Mommy was crying. Walking up to her line: Hailey was jumping up and down; Mommy was shaking like a leaf. Waiting in line: Hailey was fine; Mommy was still crying. . . . then another student starting crying. Like lying on the sidewalk holding onto his mom's legs crying. Then Hailey's lip started trembling, one tear rolled down her cheek and she said "Mommy, what if I need you? I don't know how to call you yet!". Right then the door opened, the teacher whisked all the kids in, and Mommy was left squatting on the sidewalk. Still crying.

The day went by SO slowly. All I wanted to do was go back to school and peek in the window of her classroom; or call and make sure she was ok. BUT, eventually 230 rolled around and when we pulled up to pick her up, she had a huge smile on her face. She climbed into the car and said "I missed you all but I had so much fun!" Other than the last few days following the ambulance fiasco she's been doing amazingly well at school. Her strength, perseverance and resilience amaze me.

Update

2011-09-29T19:46:00.000-07:00

Hi, all.

We still don't know what's causing Hailey's seizures to "flare up" so badly and she's having a hard time recovering. Today was her second full day back at school (she went for a half day Tuesday), and she's done ok but her teacher reports that she's pretty "out of it" as she is at home and she's exhausted when she gets home.

Tomorrow she will be starting an ambulatory EEG. We will go to the hospital and get hooked up (they SUPER GLUE the electrodes to her head and it takes 2.5-3 hours), then we take her home on the EEG with a little computer connected that records all brain activity. She will stay connected all weekend and have it removed Monday afternoon. Hopefully this gives some kind of answers. Her neurologists partner who was on call Friday and this weekend when Hailey was in the hospital also increased some of her seizure meds.

Will try to get some pictures tomorrow so you guys can understand how much is involved in this EEG business.

Coming up next-the extremely late first day of school post.

2011-09-26T22:17:00.001-07:00

Blogging from phone: we are home. Haileys having a hard time. Yesterday she seemed much better, today was worse again. It's hard to tell if this is just seizures and the effect of those, or encephaloPathy too...

Her doc wants to do a different type of EEG. We are waiting for insurance approval for that. This is so frustrating. It's so hard not knowing. It's hard watching her be so amazing then have these periods where its like our monkey is missing. This is so stressful. Emotionally, financially, physically and spiritually.

Hopefully between the changes her doc made to her seizure MEDS, and the EEG, we will get some
Answers and improvement. Thank you for your thoughts and prayers! We appreciate each and
Every one of them!

Hospital

2011-09-23T16:15:00.000-07:00

Hailey's in the hospital again. Her school called an ambulance today because she was having petite mal seizures back to back. I met her at the hospital and she continued to have them and wasn't herself, so they transferred us to "her" hospital. We just got here and into a room and we're going to see what's going on.

Would appreciate your thoughts and prayers. She's had over 20 of these today, and that's a lot for her little body to take.

Will update soon.
Robin

Why?

2011-08-06T21:18:00.000-07:00

Why has Hailey been through so much in her short little life? So much pain, so many struggles and obstacles. Despite all that, she is so STRONG, sweet, loving, caring, giving, funny, kind, silly and clever. She has overcome so much and amazed me every day. I LOVE YOU, HAILEY BUG. YOU'RE MY HERO!!!

A Best Friend

2011-08-06T16:28:00.000-07:00

A best friend. . .
Knows all of your flaws and secrets, and loves you more because of them.

Is there to support you through the hard times, cry with you through the sad times, help you enjoy the good times and celebrate your triumphs.

Is there when you need her. Not because she has to be, but because she wants to be and instictually knows you need her.

Can stay up all night on the phone with you, laughing till you're both crying over nothing inparticular.

Can appreciate the value in ridiculously hideous gag gifts.

Will come to terms with your picky eating and embrace your love for ketchup.

A best friend. . .
Will be the best Auntie that your children could ever ask for, and love them without bounds.

Is there for you no matter how many miles separate you.

Can be closer to your heart than the sister you never had.

Lou,
Thank you so much for being all these things and more for me. I could not have asked for a better friend or auntie for the monkeys. Thank you for letting me talk about things that no one else will. I hope that I can return the favor.

With all my love,
R

Lillie's Birthday

2011-08-06T16:12:00.000-07:00

I know that this post is late. I'm sorry for that.

Lillie's birthday fell on a Wednesday this year (July 20th), but because we were in the thick of Hailey's medical issues, we celebrated her birthday that Saturday. Hailey still wasn't doing very well, but we enjoyed our time, just our little family. You would think that after four years this would be easier, but it's not. It's harder. The void where Lillie should be seems emptier every year.

Lillie,

Happy 4th birthday, sweet girl. We hope you liked your balloons, and we're sorry they were late. Thank you, Lillie for sending us little signs that you're with us. Each rainbow, butterfly and beautiful sunset reminds us that you're watching over us and sending us your love. We miss you every single day and wish that you were here to learn, grow and play with Hailey and JJ. We hope that you had a great big party with Chloe, Kenzi, Ben, Jessie, Kate, the Burke babies, and all your other angel friends. Know that we love you more than the stars in the sky.

Happy Birthday, Angel!
Love,

Mommy, Daddy, Hailey & JJ

Update

2011-07-23T17:23:00.000-07:00

I'm sorry I haven't updated sooner. Hailey is ok, she is having her 14th encephalopathy. Thankfully it's not as severe as the past few have been and the doctor we saw at the ER said he thought it was triggered by the anesthesia an surgery. So, with time she will get better. She is also having a hard time not being able to eat much because of having the abscessed tooth pulled but she is happy to have an excuse to eat Popsicles all day!

This week has been hard for me. It started with my grandpas health stuff, then haileys surgery and complications, then Lillies birthday. You would think that after four years it would be easier, but its not. It's harder. I know we can't expect everyone to stop their lives and help us through this and that a lot of times people don't know what to say, but having people forget or not say anything or think we have "moved" on stings. We sent Lillie some balloons yesterday and although Hailey wasn't feeling great it was nice. Just my two monkeys and J.

I will have a birthday post soon.

Thank you for your continued thoughts and prayers!

Hi Ho Hi Ho

2011-07-19T20:48:00.000-07:00

It's off to the ER we go.

We think Hailey is either having another Encepalopathy or has an infection. Seems like encephalopathy but she has a high fever which she doesn't usually have with it, so we'll see. We're going to Children's which isn't ideal if it's encephalopathy but is recommended because that's where the surgery was.

I'll update as I can. Thank you for your thoughts and prayers

2011-07-19T16:19:00.001-07:00

We are going home.

Hailey is doing ok. Not very well, but better than yesterday. She is having pain and generally unhappy. I think what she needs more than everything is rest so hopefully she can get some tonight! Thank you for your thoughts and prayers!

2011-07-18T18:29:00.001-07:00

Haileys surgery is done with and went well. She is having some pain and pretty unhappy (they don't have pink Popsicles, her leapster is apparently broken, and she needs balloons), but she is generally ok. We are admitted for now and don't really know what the plan is. Biggest prayer/thought request is for rest :)

Thank you for checking in.

2011-07-18T10:18:00.001-07:00

Haileys in surgery. When they were putting her to sleep, the anesthesiologist asked who her favorite princess is and Hailey said "I am"! Will update when I hear anything. Thanks for the thoughts and prayers!

Quick Update

2011-07-17T22:16:00.000-07:00

Sorry it's been a few days, life has been hectic around here. My family is going through another trial, and because some of them have been out of town and don't know what's going on, I haven't been able to share, but I would appreciate your thoughts and prayers.

Tomorrow is Hailey's surgery. Because I've been so busy with family stuff, it kind of snuck up on me. I don't know if that's good or bad. . . but it is what it is. We have to be at the hospital at 9:15 for surgery at 11:15. Your thoughts and prayers would be greatly appreciated. Specifically for Hailey's safety and comfort.

Here's my sweet girl Thursday. She is suddenly obsessed with purses. She doesn't have very many yet, but she LOVES them. She has made it very clear that she wants to be "sssso fansssssy" for kindergarten, and this means jewelry, hair bows, purses and more! If only she had the income to make that happen!

I will update as I can tomorrow and I'll warn you ahead of time it will most likely be from my phone so error-ridden. Please forgive me in advance.

Thank you for your thoughts and prayers.

~Robin

Heaven Kick

2011-07-10T20:48:00.000-07:00

Hailey has really been fixated on dying and going to heaven the last couple days. She will burst into tears and say that she doesn't want to go to Heaven because she will miss JJ and Mommy and Daddy. Or she doesn't want to go to Heaven because she will miss her lovies and purses and petshops. All day today she worked on a list of things she would take to Heaven with her. Her petshops, her clothes, her toys, her purses, then she even said we need to go to storage and get her stuff that's there.

She talks about all the babies we know who are there~Lillie, Chloe, Kenzi, Ben, Garrett's babies, etc...

Then when it's raining she asks if there are umbrellas in Heaven etc etc etc...it goes on and on and on, and it's really hard for all of us. There are days that I just don't want to be reminded that part of my heart and our family is in Heaven, but we answer her questions as carefully and thoroughly as we can.

On another note, she's losing her hair again. She is very worried about if she can wear big bows and hats to kindergarten; we've assured we'll make it happen :)

I will try to be a better blogger, even when we're super busy! Thanks for checking up on us!

2011-06-25T22:25:00.000-07:00

HAPPY BIRTHDAY, JJ!!!

I can't believe that my JJ, my monkey man, MY BABY IS 3 TODAY! We had a good day celebrating his birthday and Chuck E Cheese, and potty training with ZERO accidents, but I'm beat. I want to do a full on birthday blog post for my littlest monkey, so I will do it {hopefully} tomorrow.

JJ, I love you sweet boy. Thank you for making Mommy laugh every single day. I love you SO much!

Hard.

2011-06-12T16:46:00.000-07:00

Our days have been hard and long.

I think the hardest thing to deal with through this disease is the fact that Hailey's condition is so drastically different. She's either developmentally ahead, so happy, funny and kind, or she's encephalopathic and a completely different child.

This is so hard, and she doesn't deserve this. I hate seeing her so unhappy and not herself. I hate not being able to soothe or calm or comfort her. I HATE THIS!

13

2011-06-10T19:56:00.001-07:00

Hailey's having her 13th episode of Encephalopathy. We were admitted, but are home now. It's always really hard at home as she waxes and wanes trying to recover and this time is no exception.

Your thoughts and prayers are appreciated and I'll update when I can.

THANK YOU!

Daddy and His Girl

2011-06-07T18:00:00.000-07:00

Happy June 7th!

2011-06-07T13:48:00.000-07:00

I didn't want to title this post "Happy Easter!",

because let's face it. It's just pathetic that I'm just now doing my Easter post in early June. But. . . . I've been SO busy! So, without further ado, our Easter!

Our Eggstravaganza!

Trying to pick a face for one of his eggs:

Both the monkeys sleeping on Easter Eve

Reading books with Nana while the Easter Bunny came:

Easter at Julie, Wayne & Katie's:

I hope you all had a great Easter!

Prayers, please!

2011-05-26T00:35:00.000-07:00

I'm posting from my phone here, so please bare with me.

A lot has been going on here. Jeremy's grandma, who had a big hand in raising him has cancer. In her brain. It's much worse than originally thought, and things aren't looking good. Jeremy and I are leaving today (since it's 130am) to go visit her,help take care of some things, and offer any support we can. Hailey and JJ are staying here with my mom. That is very hard for me to even think about (not the staying with my mom part, rather the away from me part), but it just wasn't doable to take them. We would appreciate any prayers you have to spare. For safe travels, for Jeremy's mamaw, for Jeremy, for our kids, for my mom, and for everyone else involved.

Otherwise, we are all doing well but have been even more busy than usual. Hailey graduated from preschool Wednesday. Yes, I cried. More on that later.

I will try to update as I can. Thank you for your thoughts, prayers, love, encouragement, and support!

A Bust

2011-05-13T23:06:00.000-07:00

Jeremy, JJ and I went fishing for the first time this season today while Hailey was in school, and it was a bust. JJ wanted his Daddy to catch a whale, and this little guppy was all he could pull off.

More fishing pictures to come, but Blogger is updating and they load sooooo slow. Have a good night, all!

LOL

2011-05-10T22:06:00.000-07:00

I'm too swamped with watch orders to write a proper post tonight, but these two funnies from JJ were too good not to post! Warning, they're slightly inappropriate, but straight from my monkey's mouth!

We were at the park and I was standing behind JJ helping him up a rope ladder thing.
"Mommy!! Move yours big booby! It's squishing my hairs!"

And today at bedtime, I went to check on JJ (he's been getting out of bed and messing around recently). I went in and he was in bed but looked upset.

M: "What's wrong, Bubba?"
J: "My pants are stuck all the way by my penis!"

I'm thinking wedgie... (don't know a more proper word for it) so I pull his blanket back, and he has on these dork skinny jeans that belong to his build a bear, pulled all the way up to his crotch area. For those of you who don't know JJ, he isn't huge but he definitely isn't skinny. I don't know how he got them pulled up so far, and I had to have Jeremy help me get them off him!

BOYS!

Shameless

2011-05-07T00:26:00.000-07:00

No, I have no shame. I need more "fans". My watch store is really taking off, but I need help spreading the word. Just "like" my page, then for every 25 fans you refer you get a $10 gift certificate!

ROBIN'S CUSTOM WATCHES

If you'd like to order, mention my blog for a special discount. They make great gifts too!

If you have any questions, you can comment here or email me at robinswatches@yahoo.com

THANK YOU!

Sick JJ

2011-05-07T00:20:00.000-07:00

My monkey has been very sick. He's had a nagging cold/cough for close to a month now. Talked to the doctor about allergies, she didn't think so...We went back to the doctor in the third week of the sickness and she said that (although you couldn't hear it without a stethoscope), JJ was wheezing, so she started him on breathing treatments every six hours. The next evening after dinner, JJ really wasn't feeling well and his fever was quickly rising, so we decided it would be best to just take him to the ER. That was Friday night and we decided it would be better to just make sure he was ok before it was the middle of the night and we were more exhausted, and everyone was sure that he couldn't wait through the weekend. He was obviously getting worse not better. So, we got to the hospital and his fever was lower, just over 99 degrees, but because of his cough and wheezing the doctor ordered a chest xray to rule out a pneumonia. We got right back to xray, and while we were in there JJ was wheezing so badly that he was turning blue. He got three breathing treatments back to back (the most they can do), and in the meantime his fever was up to 103.3. (They gave him two doses of Tylenol and one of Motrin and his fever wasn't coming down.) His heartrate was over 220 and he was feeling really horrible. They gave him popsicles, dumped ice water on his head and put a cold compress on his head. They decided to keep him overnight because he just wasn't improving fast enough. His fever finally broke after about five hours, but his heart rate stayed extremely high and wouldn't come down. He stayed up all night and finally got comfortable enough to fall asleep at 5:30am, just in time for me to watch the Royal Wedding. I had absolutely no plans to watch it before we were there, and very little interest in it, but I was awake so I watched it. Around 6:00am, the doctor and nurse did an EKG of JJ's heart. They were worried because his heart rate was so high and they needed to send him home on breathing treatments that can make it even higher. The EKG showed an abnormality, he had a missing pathway shown in his heart rhythm. However, the ER doctor consulted the cardiologist on call who said that he would be ok on the medicine he needed, and we could follow-up about the abnormality. The ER doc has diagnosed him with definite asthma.

So, I'm exhausted and apparently rambling by the length of the above paragraph. Sorry about that. JJ's doing better sickness-wise (fever is gone, no more runny nose, etc), but his cough isn't much better. He's on breathing treatments every four hours around the clock, and often needs an extra one in between. Thankfully he's the most happy, cooperative baby around, so it hasn't been too bad! Thank you for your thoughts and prayers! We haven't dealt much with "regular" sickness before!

{Such a brave boy}

{Fever is rising}

{Finally comfortable, Thank God!}

Yep, he's trying to shove a cracker through the holes in the side of his mask. Can't blame him for trying!

Mommy loves you, sweet boy. Thank you for being so brave and just darn cute!

Happy {Super Late} Birthday, Mom!

2011-05-06T23:41:00.000-07:00

My Mom is now ~~10 times older than Hailey~~ had a birthday in April, and I thought she deserved a big party, so I threw her a surprise party with all our family and her close friends from work. To say she was surprised was an understatement.

{I LOVE YOU, MOY!}

Jeremy isn't an ax murderer, he just had a sore lip.

Yep, that's my monkey butt!

Happy Birthday, Mom. We love and appreciate you more than you'll ever know!

So Thankful. . . .

2011-04-26T20:23:00.000-07:00

for INTERNET! ! ! ! I know that's odd, but we really are thankful to have Internet again. I need it to keep MY STORE running, Jeremy needs it for school, I need it for work, and of course I need to blog and facebook to keep myself sane!

We are doing well. Hailey's toe is finally drying up, feeling and looking better. JJ's still LOVING "Big Boy School", and Jeremy's doing well with school. He's no longer working, and is going to school four days a week. I've started a new job working from home. It's been hard, but hopefully things will get ironed out and all my hard work will pay off!

I threw a surprise party for my Mom's 50th birthday, and it was so much fun. (Happy late birthday, Mamacita. We love and appreciate you more than you could know!)

The kids (and us) had a great Easter! The Easter Bunny (thanks to a gift card) brought them bikes, and they love them, even though it's been too cold/rainy/snowy to ride them...they took them for test drives in the living room.

We are trying to figure out where Hailey will go to Kindergarten next year...it's going to be quite a struggle I'm sure.

I have a ton of pictures and updates to post, but that will have to wait till I'm less tired!

"Big Boy Play School"

2011-04-07T20:57:00.000-07:00

On the way to school:

Mommy's Big Boy:

Settled Right In (These are super cool magnetic balls, by the way):

So. . . . we've gotten to the point that we need a long term plan for JJ's care while Hailey's in the hospital or Encephalopathic. The people who have been helping just aren't able to anymore, for no fault of their own, it's just getting to be too much time off or from other obligations. Anyway, we've decided that the best thing to would be to put him in "big boy school" (daycare) at least one day a week. That way he will get to know his "teacher", and when Hailey's encephalopathic or in the hospital we can increase his hours as needed. He LOVES it, and has been doing SO well! He hasn't had a single behavior problem yet, and his teacher Ms. Vicky actually said he's been the most well behaved out of all the kids. Way to make Mommy proud, little man!!

Thanks to JJ's Nana for helping us with daycare!

Pictures :)

2011-04-07T20:46:00.000-07:00

This post is going to be quick because we're at a friend's house sharing his internet, but I thought I should post a few pictures while I can!

Hailey's Toe

2011-04-07T20:40:00.000-07:00

Just wanted to check in and let you all know that we're here and doing fine. Hailey had an "incident" this past weekend. My Mama took us to lunch, and when we were going into the restaurant, the wind caught the door and it went over Hailey's foot. It ripped her entire toe nail off, and she had a couple small cuts on her toe. We finished our visit with Mama then headed home. I decided that I should call the Dr and ask if we could get her toe wet or not, and if I should put any kind of neosporin or other medicine on it. Well the Dr asked if the whole nail was off, and if you could see the tissue underneath the nail area, and when I said yes he said "Ohhhhhh, then you need to bring her to the ER right away". I really didn't think she needed to go, but off we went. They did an xray to make sure it wasn't broken (we knew it wasn't), then they put in a nerve block to numb her foot. After that did that she read books and couldn't feel anything. At one point she said "ooh, I can feel that", but the Dr had a pair of tweezers about an inch into the inside of her toe so we figured she was ok!

Anyway, they ended up having to close up her toe. Because she ripped it so deeply, the Dr said she ripped the whole nail matrix (part back behind the cuticles. If you think of a tooth it would be like the root) out, he doesn't think it will ever grow back. He said the cuticles will grow out to the end of her toe then it will {most likely} just turn into skin and look like an "upside down toe". I guess we will just have to wait and see.

It's actually been harder to manage than I thought it would be, and her foot stinks to high heaven, but other than that she is fine. We were worried about how it would be at school but it's been fine. I have pictures but don't know if I should post them or not. Input??

We're Still Here

2011-04-01T18:04:00.000-07:00

Just wanted to try a quick update from my phone. We're still here and fine. We got through packing/moving everything to storage/cleaning the old house. We're at my moms now and everything's fine. She doesn't have internet, so I wont be blogging much, unless I treat myself to some free wi-fi somewhere!

Hope to write to you soon!

This & That

2011-03-24T22:20:00.000-07:00

Yes, you read that right. We're moving. We've known for almost 60 days that we have to move. We are renting and had expected to stay here at least another year but our landlord has decided she wants to move back in, so we're out. We had a horrible time finding a house (apparently because so many people are getting foreclosed on, they're snatching up all the rentals), but we finally found one that we really like. It's much bigger and also cheaper than the house we're in now. Only catch is that it isn't available till the last week in April and we have to be out of here March 31st. So, our stuff is going to storage, we're going to my mom's, and every one's going to cooperate! All kidding aside, I'm SO stressed about packing and moving while Hailey's encephalopathic, but the staying with my mom and moving into a new house part is fine. Just a stressful time!

For a Hailey update, she's definitely not back to normal, but she's finally made a turn for the better! We never did get home health. After three trips to the ER, numerous phone calls to the Dr and whatever else we went through last week, we've found out that our insurance does not cover Home Health nursing. So, Hailey can't go in the hospital and she can't stay out. There has to be some happy medium, right?????

Anywho, things are uber busy here. I'll post as I can. Definitely have to post JJ's first day at "Big Boy School"!

Hope you're all doing well! Please keep the thoughts and prayers coming. Thanks!

Wordless Wednesday {Almost}

2011-03-22T22:12:00.000-07:00

St Patricks Day

2011-03-17T11:01:00.000-07:00

Wednesday Update

2011-03-16T21:47:00.000-07:00

Well, I don't have much to update, and Hailey needs to be held at all times, so this will be brief.

Yesterday, Hailey was mostly in the sleeping/catatonic stage of her encephalopathy. Late this afternoon started the hallucinating/combative/out of control part. It's been hard. We're definitely seeing why we need to be in the hospital. I was on the phone a lot today, and hopefully home health should be figured out by tomorrow. We have got to sleep. We need help. We need support. Jeremy stayed home from school today. He will hopefully be able to work tomorrow. We really need two people here, but he would be on unpaid time which we really can't do. So we will see how tomorrow goes. Hopefully home health comes through and things fall into place.

What we really need is rest, and some sort of good news.

Thank you to everyone who's sent their thoughts and prayers. We really appreciate them. To the person who donated (much needed and appreciated) money to us, I would first like to say thank you, and secondly say I think it's so cool that someone all the way from the United Kingdom!

P.S. Tomorrow I'm going to try and get a video of Hailey so that you all can better understand what she's going through and what we're struggling with. I'll also post a couple pictures.

Prayers for Hailey

2011-03-15T21:57:00.000-07:00

Hailey's having her 11th episode of Encephalopathy.

Today her Dr informed us that we're at the point that there's nothing more that they're going to do for Hailey. No more diagnostics (to figure out what's causing them or how to stop them/cure her), no more treatments, etc...

She recommended that we hire a home health nurse. Everyone agrees that Hailey needs constant care when she's Encehalopathic, meaning hands on her. She can't be left alone for a second because she isn't safe. We can't afford our share of home health, but we also can't risk that Hailey might injure herself unintentionally or something else happening. At this point we have to figure something out, and it's overwhelming.

So, that's what I'll be figuring out tomorrow.

We really weren't prepared for this. I guess we always knew it was a possibility, but we were still holding out hope. We were not prepared to have that hope smashed. We are not prepared to do this forever. We are not prepared for this to be Hailey's reality. Forever. It's easy for her doctors to say that we should enjoy the times that she's healthy and "deal" with the times that she's not. We all know that would never fly if it was their child, their family that was suffering through this. Is it always like this? No. When Hailey's in-between Encephalopathies, things are amazing. She's smart, happy, kind, generous, loving, funny and so much more. That's what we lose to Encephalopathy. It's like she isn't even in there.

I don't know. This is hell. We are emotionally overwhelmed and broken. So many things on our minds, shoulders and hearts. We would appreciate any thoughts or prayers that you can send our way. Thank you.

Sorry, guys!

2011-03-07T21:31:00.000-08:00

I don't usually do these, but I would SO like to win a special piece of jewelry from this giveaway! I would pick something special in which I could include all of my babies!

So ~~please don't check it out because I want to win~~ check it out if you must!

365 Challenge-Week 7

2011-03-07T20:46:00.000-08:00

(They're truly two of a kind)

(Daddy was driving, so we beefed up the child restraints)

(Ready to rock it out at the zoo)

(Not a fan of the car wash)

(Yep, he chose to wear dragon pants and a glow in the dark skeleton shirt to the tree house. I'm all for ~~keeping him happy~~ free expression!)

(Hailey and her friend Bella at the tree house)

This & That

2011-03-07T20:06:00.000-08:00

I've been MIA yet again. Sorry about that. First off, thank you so much to all of you who sent positive thoughts and prayers to my Mama. She's doing ok considering. I think her surgery and recovery has been much harder than any of us expected, but she's progressing each day.

I've been struggling along here. Long story short, we have to move at the end of March, and we haven't found a new house to rent yet. Because of the rate of foreclosures right now, there are limited rentals in our area. So, I've been researching online and running around trying to find somewhere a lot.

I'm also {hopefully} starting a new job soon, so I'll be glad to have some structure and productivity each day!

Hailey's doing well. . . . her reading/letter recognition/writing is really taking off and she's doing remarkably well at school. She's convinced that we're moving to a new big house so that we will have room for the twins that we're having. I'll leave it to Jeremy to break her heart on that one.

JJ is also doing really well. He's talking more and more and has the cutest little sense of humor! He (and I) both really enjoy our Mommy/Monkey time while Hailey's at school. Even if it's appointments or running errands, it's nice for both of us to have that one-on-one time together!

I have lots of new pictures to share with you, but for now I'm going to work on updating my store.

Just FYI, my friend Jenifer is going to update my blog for me, so things may work a little slowly while it changes over.

Thoughts & Prayers Please

2011-02-23T19:16:00.000-08:00

I would like to ask for your thoughts and prayers. My Mama (grandma) has breast cancer. I haven't blogged about it because I haven't had the right words. She is having a double mastectomy tomorrow. She already had a partial mastectomy just after we got back from Cleveland, but the cancer had spread and she's now having the mastectomy. Jeremy has taken the day off to watch the kids, and I will be at the hospital all day to wait with my Bopa, and see/help Mama after the surgery.

Any thoughts or prayers you can spare would be greatly appreciated. Thank you.

This is the amazing woman you can send them to:

I think this picture sums it up perfectly:

WE LOVE YOU, MAMA!

For Maddie

2011-02-23T18:37:00.000-08:00

Sweet Maddie is a four month old adorable little angel. I wont go into details, but she passed away unexpectedly this past week. As you can imagine, her parents are having a hard time and need all of our thoughts and prayers. Her Mommy would like us all to help them honor their sweet little girl. Here's what she requests: (from their blog)

"Maddie loves big bows. She always wore them. We would be honored if on Wednesday 2/23/11, in remembrance of Maddie, you would put a big bow on your daughters. We would also love to get pictures. kellieshsu06@yahoo.com Thanks so much!"

Maddie, we're thinking of you today and often. Rest in peace, sweet angel. Staats family, you're in our thoughts and prayers. No person should have to face the pain of losing a child, but unfortunately I too have felt that pain. Hopefully our daughters are watching over us now.

In honor of Maddie:

365 Challenge-Week 5

2011-02-21T20:20:00.000-08:00

(So peaceful)

(Oops, Mommy woke her up.)

(I need a separate post about his pillows/lovies/sleep rituals. lol)

(Yep, that's how he rolls.)

So Proud!

2011-02-21T19:59:00.000-08:00

That's how I left Hailey's conference. It was almost two weeks ago (oops), and it was ALL GOOD! Hailey's doing extremely well socially. She's doing a great job sharing, taking turns, communicating, and helping other kids. That's NEVER been a concern for us because Hailey's always been a really nice girl, very giving, etc... but it's still nice to hear from an outside person. Hailey's also exceeding our expectations developmentally. Despite missing about a third of school, she's not only on track, but AHEAD developmentally. The only {comically} negative that Ms. Sarah had to say is that Hailey still skips #15 when she counts. She can count to 100, but always skips 15. At this point it's a joke to her, and her teacher knows that.

Lastly, Hailey's close to having a lisp. She's right on the borderline, and it isn't quite considered a lisp, but it's super close. Since she's in a preschool with available Special Ed services, she has started speech therapy to work on this. They know that it's because some of the medications and encephalopathy, but it's still upsetting to hear. Just like everything else, we will work through it and Hailey will overcome it like she has every other obstacle she's had to face.

All in all, it was a great conference, and despite all the challenges that Hailey's had to face, she's doing amazingly well and we're SO PROUD!

Ketchup

2011-02-17T09:18:00.000-08:00

As those of you who know me know, I LOVE ketchup. It's the only "sauce" I like other than the occasional BBQ sauce that I like. I'm an insanely picky eater. I don't like any salad dressing, pasta sauce, condiments, cheese, or anything else with flavor. I like PLAIN everything, then I add ketchup to it.

BUT. . . . this post was supposed to be about CATCH UP. I'm behind on blogging yet again. We've had a hard and busy week or so here. Last week, I slipped on the ice and fractured two bones in my arm.

Not such a good idea when you have a super hectic schedule, and two busy kids to wrangle. Thankfully, Jeremy has been a great help, especially with getting me ready everyday. My mom has also helped when she can around work, and did 5 or so loads of laundry. Even delivered it back to us! (Thanks, MOY!)

It would have been great to take this week off, but that just can't happen with the life that we lead, so we've still been running like crazy! On top of school and our regular weekly appointments, we had two Valentine's parties at Chuck E Cheese, Hailey's party at school, then JJ and I got sick, then a birthday party, a trip to my Great Grandma's nursing home, a trip to the Emergency room, a trip to Urgent Care, two appointments to the pediatrician, and a trip to the zoo. I'm exhausted, but have been loving this time with my monkeys. Last week it was -30 here with windchill, and yesterday when we went to the zoo we wore short sleeves and flip flops! So we're loving this weather, and loving how well Hailey's doing!

I will have a couple more posts to catch up on-Hailey's parent/teacher conference, the zoo, etc....I'm working on it!

365 Challenge-Week 4

2011-02-17T08:59:00.000-08:00

(Will Trade Sister For Tractor)

(Rockin' the beadhead!)

365 Challenge-Week 3

2011-02-17T08:53:00.000-08:00

(Riding their boat while Mommy and Mama got ready to go to the airport)

My dates/pictures were a little off for this series of pictures, but oh well.

Shameless Plug!

2011-02-07T08:45:00.000-08:00

Hi, all.

I'd like to share my current project with you! I got a gift card to a craft store for Christmas, and was planning on using it to catch up on scrap booking, but I'm WAY too far behind for that, so this is what I came up with!

(Watch face photos from Sarah's watches)

The watches are interchangeable (you just undo the clasp and attach another band) so that you can change bands/faces to match your mood or outfit! They're also fully customized, so you pick the color, size, style, etc!

Let me know if you'd like to order one (by emailing me at robinvisbal); they also make great gifts! @yahoo.com

Thanks!

DRUMROLL, PLEASE! ! !

2011-02-05T14:29:00.000-08:00

We are pleased to introduce the new member of our family,

~~~~~~~~~~~
~~~~~~~~~
~~~~~~~
~~~~~
~~~
~~
~

DAISY!

The first three photos are when we went to meet Daisy before she came to meet for us.

Daisy's favorite places to sit are on Jeremy's shoulder or on my chest. She's a snuggler.

Daisy has been the perfect addition to our family. I have her potty trained, and other than wanting to be held every.second.of.the.day, she's very well behaved! Hailey is totally in love. We found little puppy shirts in the dollar section at Target. She insisted on buying them with her own money, and loves to change Daisy's clothes. JJ loves her too. He likes to lay down on his stomach and let her climb and jump all over him. We still have to remind him that she's a baby and he needs to be gentile, but all in all it's going well!

*Thank you, Nana for buying Daisy!

365 Challenge-Week 2

2011-02-04T20:26:00.000-08:00

Saying bye to Daddy at the Airport

Picking JJ's nose

He was so tired that I got him out of the taxi and carried him upstairs. He stayed asleep like that.

Dr. Hailey at the Children's Museum

Riding in style with Hailey's medical records

Eating desert at Disney on Ice (carrots, celery and sprinkles)

I'm Back!

2011-02-04T17:52:00.000-08:00

I'm back from my blogging break. Not sure why I took one exactly, but I think that with the letdown of the Cleveland trip and some other things that are adding extra stress to our lives right now, I just didn't (and still don't) feel like I'm in a very good place. I want to be positive, to focus on the joy and the happiness that we have in our lives instead of the struggles and heartache, but I guess sometimes that's easier said than done.

I am going to try and do just that-focus on the positive, pray for the negative, but I have also come to realize that I use this blog as a sort of journal. This is somewhere that I can vent my feelings. I know that not every person is going to understand or agree, but it's very therapeutic to get it out. I also hope to look back one day and see all that we've overcome.

We've had a hard couple weeks. The first (about) two weeks after getting back from Cleveland, things were still hard with Hailey. This past Encephalopathy took a lot longer for her to "recover" from, and she had a lot of ups and downs. One day I would think "wow, she's doing really well; we've made it through this one", and the next day (or even hour), she would be back to being more confused, dazed and un-responsive. Last week was hectic with all her follow-up appointments and trying to get back into the swing of school, and the past ~~too many~~ few days we've been in an arctic storm here, so we've been stuck inside. As you know, we like to be, and are always on the go, so I think we're all a little stir crazy!

Today we got to have a special treat. I won movie tickets on the radio quite a while ago, so we invited some of our mom's group friends to join us at the movie. All the kids had fun, and were SO well behaved! My kids wont watch a whole movie here, but they're mesmerized at the theater.

We have also added a new member to the family. I will do my best to do a post about her and catch up on my weekly photos tonight! Hope you're all doing well, and I would love some comments! It's a great, fun way to get to know you a bit!

Taking a Break

2011-01-18T18:45:00.000-08:00

We are home. Things are not going well for a number of reasons. I have been deeply, deeply hurt by some things that have happened in the last few days, and we have just started to deal with a death in Jeremy's family.

My priority is always our kids and Jeremy. Right now that's my focus and where my energy will be spent, so I'm going to take a few days from blogging.

Thanks for understanding, and we would appreciate any thoughts or prayers you could send our way. The stress of this life is a lot to bear.

Trip Update

2011-01-14T12:39:00.000-08:00

Sorry I haven't updated-This trip has been tough.

Well, to get right to it, this trip has been a total waste. Waste of time, waste of money, waste of energy, and waste of hope. The doctor we came to see said that there was no point in us coming here. That we should have gone to another hospital in the first place. One would wonder why he accepted Hailey's case in the first place, huh?? He is going to order that a few basic tests Hailey's already had be repeated, one of them being a 3-5 day video EEG (she would be in the hospital the whole time). We don't think there's any point to this as she's had these done multiple times, but we don't have a choice.

We are now faced with two more trips. One out of state, then there's an alternative treatment center out of the country that we can try as a last chance. Our hope of finding the one doctor who would actually take an interest in Hailey's case and dig deep to figure out what's going on is gone. Our hope of getting answers is gone. Now we go home, try to raise money for another trip, figure out how to logistically make another trip work, and hope that Hailey's next Encephalopathy isn't as close as the last one was.

Please pray. Pray for Hailey's comfort and continued recovery. Pray for our strength. Pray that our miracle doctor is brought to us. Thank you.

P.S. We got free tickets to Disney on Ice tonight. So, that will give us a nice distraction/break! I will try to update again tonight with a few pictures of our week and the show tonight!

We Made It!

2011-01-09T18:40:00.000-08:00

Yep, we made it to Cleveland. It was a loooooooong ordeal after ordeal of a day. Some of us got trapped on the train, we encountered numerous cranky people, and nearly missed our connecting flight. Add not eating ALL DAY (we were planning to have lunch and feed the kids on our layover, but oh ya. we ran across the airport on our "layover"), and you've got some tired, hungry travelers.

The kids were both AMAZING today. No fussing, whining, tantrums, NADA! I love them!

We didn't think through how hard it would be not to have a car here. We have spent a whopping amount of money on taxis today, and we have to get one (really two) again tomorrow to go to the grocery store. Ugh.

JJ is currently asleep in a crib in the closet. We'll see how that goes, because he's in a bed at home. . .

Wish us luck! Will update with more tomorrow. Shockingly, I remembered all the computer/camera components/cables/chargers.

Thank you all for your continued thoughts and prayers!

365 Challenge-Week 1

2011-01-08T22:31:00.000-08:00

And best of all: Check out this video of JJ!

We're Leaving on a Jet Plane. . . .

2011-01-08T22:19:00.000-08:00

We're leaving for Cleveland tomorrow. Am I ready? No. Do I want to go? No. Is this trip going to be easy? No. Are we sure that we'll get answers there? No. Are we hopeful? YES!

I don't have the time or energy to do much of a blog post, but I need to thank those of you who have helped us get/go to Cleveland. Thank you for your monetary donations, and your prayers. For those of you who donated money to us/our trip, I will be thanking each of you privately/individually while we're on our trip, but I wanted to thank you now as well. Thank you for your generosity.

We would appreciate any prayers or positive thoughts you can send to us for this trip we're about to go on. Pray for safe travels, comfort for Hailey, and wisdom for her doctors. (And an extra prayer for my sanity would be appreciated too!)

I'll be blogging {hopefully} while we're gone, so I'll talk to you soon!

Dear Hailey,

2011-01-05T20:43:00.000-08:00

I can't believe it's been FIVE years since you made me a Mommy! It's been five years since you showed me what it means to truly love; to have my heart living outside my body. It's been five years since you made us a family.

Since you made your Daddy.

You amaze us each and every day. You're so strong and you're a fighter. You're funny and silly. You're smart and kind. You're loving and compassionate. You're giving and thoughtful. You're amazing because you're you, and we wouldn't change a thing.

We love you with all of our hearts. Happy Birthday, Baby Girl!

365-Day Challenge, Take II

2011-01-02T18:05:00.000-08:00

Last year, I pledged to s~~tick to the~~ do my best to do the 365 Challenge. Simply put, this was to blog every single day. As you all know, that didn't happen. At the beginning of the challenge, I was feeling frustrated because the posts were somewhat boring. "We went to the park today, and here's a picture." And so on. Then, blogging every single day just got to be too much for me. Yes, I'd like to blog much more than I do. I don't have time to keep up with the kids' scrapbooks right now, so this is a way of documenting their growth, struggles and triumphs as well as ours.

What I'm going to pledge to do this year, is to take a picture of each of my kids every single day. People always say that time flies, and I don't want to miss or forget a thing. When Lillie died, I had this obsession with holding on to every little thing and memory both from her, and now our other babies/kids. You never know what might happen, or what tomorrow might bring, so I want to capture every memory that I can!

So, I'm going to take pictures every.single.day. Then I will post the pictures for the week in a separate 365 blog post on Saturday.

Think I can do it??

Highs & Lows

2011-01-02T17:25:00.000-08:00

Well, I guess we should be used to it by now, but it's still frustrating. Hailey's health is a constant roller coaster. Coming home from the hospital was a major high. Our whole family was together under one roof, and things were much more manageable.

Well, in the last couple days, Hailey's been having a hard time. Her recovery has kind of stalled for now. She's medically fine, so no need to worry, she just stopped making progress and has possibly lost a bit more. She's VERY repetitive. Very. She has a hard time getting her thoughts out and gets very frustrated with herself. She's also very out of it. I know. Quite the technical term. She zones out a lot of times, and will nod off to sleep in the middle of something like eating, or even talking. She'll be right in the middle of a sentence and her eyes will roll back and she'll fall asleep. Her balance is also not back yet. I think part of this is her actual balance and being weak both from being in the hospital, and the encephalopathy itself, and I think the other part is that she's so out of it that she forgets what she's doing.

This is her typical recovery from Encephalopathy, but it's still frustrating. We still don't have our Hailey back, but she will fight her way out soon!

I would like to say how proud I am of JJ. For a couple weeks before Hailey went in the hospital (from about Thanksgiving), he showed me what the terrible two's really meant. He was testing every boundary he could, hitting, being defiant, and aggravating Hailey every chance he got. BUUUUUT, he's been great since Hailey came home from the hospital. He's been very gentile with her, is bringing her the toys he knows are her favorite (instead of taking them and taunting her with them), and he constantly asks for things for her; "Hailey coughed. Her need water". "Hailey cold. Her need a didi". "Hailey crying. You stay. Me kiss her". I really couldn't have asked for better. Thanks, Monkey!

Lastly, I would like to ask all of you to leave a comment when you visit our blog. The numbers of views we get are amazing, and we'd just like to "meet" all of you! (The encouragement doesn't hurt either!)

S.O.C.

2011-01-01T17:16:00.000-08:00

Once again I'm slacking. We're home. Have been for a couple days. We've been too busy to blog. Or clean. Or take down the Christmas tree. Or fully unpack from the hospital. Or sleep. Or bathe properly. Well, you get the gist.

Things are always hard when Hailey first come home from the hospital. The recovery is slow and hard on all of us. She requires a lot more care and attention than usual, and more than that a lot of supervision. She is pretty out of it (for lack of a better term). Her balance is off, her memory is off, and she gets confused very easily. We're all totally exhausted, but happy to be together under one roof again!

Our trip to Cleveland is in just one week. **Oh my gosh, how did that happen? I have so much to do! I must make lists! How am I going to do this? AAAAAaah!** Ok. Sorry for the freak out. This trip is causing me a lot of stress. It is a huge financial stress. We weren't planning for Hailey to be in the hospital before we went, and we're having a hard time. More than the financial stress is the personal stress I'm feeling. Logistics. Pulling our family apart yet again. Emotional stress of doing all these appointments and making so many decisions on my own. Usually I have Jeremy to bounce these things off, and he shares in the decision making. I'm also stressed because Hailey will still be Encephalopathic. This isn't a major deal, but will complicate things. The airport will be harder. Staying in a hotel will be harder. Navigating a new place, new hospital, new doctors and policies will all be harder than if she was her normal healthy self.

I'm just trying to get organized and minimize the stress as much as I can. Oh, and by the way-my camera is dead and I left the charger at the hospital. So I will have to replace it or borrow one or something before I can post new pictures, especially of our little Christmas celebration when Hailey got home!

Merry Christmas!

2010-12-25T21:18:00.000-08:00

Well, we made it through. Christmas Day has just about come to a close. It was a hard day, but it is what it is. Being in the hospital (at least with Hailey) is a delicate balance. I have to be her voice and advocate without being rude or overly emotional. We have to balance time with Hailey, and still show JJ that he's special and important too. I have to be in the hospital, while keep things going strong with Jeremy. And most of all, Jeremy and I both have to make sure not to let this life that we're living take the best of us. So, last night and today we kind of had a Christmas grazing. Most of the kids' presents are at home, and Santa left their presents at our house, so they will be waiting for our monkeys when we get home. Here are some miscellaneous pictures. (Hailey in the hospital gown/JJ in clothes were last night, and Christmas PJ's were today) And, by the way, I can't edit anything from here, even crop/rotate pictures. So here they are SOTC.

JJ "eating" jello salad-we don't have a fridge here, so it was soft.

Thanks for the ~~tree~~ hat, Taryn!

Our attempt at a Christmas Eve family photo failed. See?:

Merry Christmas Eve

2010-12-24T22:02:00.000-08:00

What I should say? We're ok, hanging in, staying positive, making the best of things. What I'm really feeling? This sucks. Tonight was really hard. We had short visits from my mom and JJ, then my aunt and cousins dropped off gifts for my kids. After everyone left, Jeremy and I watched a new movie, Despicable Me with Hailey. When Jeremy got ready to go, Hailey FREAKED out and was sobbing. We couldn't figure out what was wrong, she kept repeating "Santa wont find my hotel (we think she meant hospital)" over and over. Then she kept saying "every one's leaving me". We finally figured out that she thought we were going to leave her alone here. So, we turned on the lights and layed on our chair so she could see that I was going to stay, and she finally fell asleep. Then Jeremy left.

That's when the tears hit. Christmas isn't supposed to be like this. Families aren't supposed to be apart. It's always bad enough that all our babies aren't here with us, but sadly we've gotten used to that. This isn't how Christmas is supposed to be. Our four family members are under three different roofs. We're having so skype to figure out Santa and family gifts. Santa is visiting 3 times so that we can make this manageable. Hailey's tree looks like it was decorated with pink spray paint and a crap load of glitter, and the tree that we worked so hard to decorate together stands at home with no children to enjoy it.

Every one's given us different advice. "Just celebrate when you get home". "Bring Santa to the hospital". The point is, we don't want to, and we shouldn't have to. Hailey shouldn't think that all this is normal or ok. We should be at home with our monkeys awake watching a Christmas movie in our bed because they're too excited for Santa to come!

Sorry for the rant. Hopefully Santa's alarm will wake him on time, and we'll have a good day despite all this.

Thank you for your thoughts/prayers/comments/encouragement. They really do mean a lot!

Christmas Eve Morning Update

2010-12-24T10:13:00.000-08:00

Hello, all!

We are still here. Sorry I didn't post an update last night, Hailey's been pretty unhappy and requiring a lot of attention. Nothing has really changed. The nurse took Hailey's catheter out late last night, so that's one less thing to worry about which is nice.

Hailey had a very special visit from Santa {my friend Tina's husband}. Hailey was pretty out of it, but she seemed happy and was smiley. Santa/Tina brought a whole bag of stuff {for lack of a better word}-markers, paper, princess jewelry, balls, slinkys etc...Hailey dumped it all over herself and made a HUGE mess with the markers. She loved it!

I don't know why the pictures are so funky, but I can't fix them from here. Hailey's awake so I have to go, I'll update again tonight. This has been very hard for us, and Hailey's out of it enough that she doesn't really know about Christmas, but it's still hard. THanks for the thoughts, prayers, gifts,encouragement, and comments!

#10

2010-12-22T15:02:00.000-08:00

Hailey's in the hospital again. With her 10th episode of encephalopathy. Same as always really, she's really unhappy, confused, agitated, combative, sad, etc....right now she's sleeping and we just got up to our room in the step down unit. Hailey's on at least a 24 hour catheter (that was an ordeal) to do a test she hasn't had before, but other than that they aren't doing anything new.

That's all I have for now. Too low to write anything else:( We would appreciate any thoughts or prayers you could send. Thanks

What We've Been Up To

2010-12-21T22:03:00.000-08:00

I have been even more horrible about staying on top of blogging than usual! Here's a quick catch up!

As most of you know, Jeremy has been working full time, as well as going to school full time. He's been quite busy and we haven't had much time with him. Thankfully he has two weeks off from school, so we're going to fill our family time reserve! Here he is working on his final project (an electromagnet) for school:

Mama treated Hailey and I to a trip to the Nutcracker Ballet. Hailey LOVED it!:

Hailey's been spending a lot of time being adorable:

Fun at the park:

I took the monkey to zoo lights with some great friends:

Hailey and I decorated a ginger bread house; she LOVED it!

Also, we found out JJ has a life threatening allergy to bees, we finally got a Christmas tree, found out Hailey's allergic to real trees, started allergy medicine, decorated tree, made our Christmas crafts, and oh so much more! This is always a happy, but also hard time of year, especially this year. We're just wishing that we had all our babies and family here and were able to fully enjoy the holidays.

The RECITAL!!!

2010-12-21T21:39:00.000-08:00

I know, I know, I've been slacking (as always). Here's Hailey's recital! Keep in mind she's learning violin through the Suzuki Method, so at the beginning the progress is slow, but steady!

Here's the video. She's playing two rhythms. The first one is "Pea-nut but-ter sand-which", and the second is "fuzzy-yellow-cater-pillar".
Hailey's Recital Video

Ready for the big recital (her belt was pulling on her gtube so she looks a little awkward):

Hailey and Flower (the violin):

Me and my monkeys:

Bopa and JJ:

We're SO proud of her!:

Nana and Hailey:

Two Peas in a Pod:

Hailey and her teacher, Jessica:

JJ was exhausted after a long night!:

I have to say, I'm so amazed by and proud of Hailey. I can't believe that she's where she is today! Doing well in school, playing the violin, etc. . . .It's hard to believe that she's come so far despite being in the hospital so much, so many seizures, etc. . . .

Hailey, you are amazing. You inspire me and push me to be a better Mommy and Mom. Thank you for making me a Mommy, and for making me smile and laugh every single day. You are my sunshine, my heart, and my inspiration. I love you so much, baby girl!

Exciting News!

2010-12-08T10:00:00.000-08:00

No, I'm not pregnant. I wish, but alas I'm not.

Our exciting news is that Hailey has been accepted for treatment at the Cleveland Clinic. We don't have much information about what will go on when we get there. All we know is that she will see her team at 8:00am on January 12th. At that consultation they will decide their plan. They might say that they don't have any ideas and we should go home, they might want some more testing, they may put her in the hospital for testing/observation, or they may have us stay there and wait for another Encephalopathy to start. We just don't know.

For now we're waiting, hoping, praying!

Happy Thanksgiving

2010-12-07T15:42:00.000-08:00

Bopa ~~begging my kids for treats Mama wont allow him to have~~ sharing:

The beautiful table:

Daddy and Hailey (the goofballs):

Mommy and Monkey:

Naughty Boy:

Trying to make up for the naughtiness {it worked}:

Too sweet!:

Katie and JJ:

I hope you all had a great Thanksgiving filled with peace and happiness!

Angel Remembrance Project

2010-12-06T13:12:00.000-08:00

Last year I decided to start a remembrance project for all of us to remember our babies who are not here with us, and I'm going to continue this year.

If you are interested in being included, please email me at robinvisbal@yahoo.com In your email, include as much or as little of the the following info as you'd like:

Baby(s) Name(s): *Feel free to use "Baby________" if you didn't name your baby.

Birth date/death date:

Special message: this can be anything you want. A photo, poem, "love mommy", whatever you want.

You don't need to have lost the baby yourself. You can do this for a family member or friend. I know from experience, that many people don't acknowledge the babies we've all lost. It may be because they don't remember, or it may be because they don't know what to say or don't want to upset us. However, I know how much it means when someone does acknowledge our babies and the loss that we've suffered. This would be a great way to show that person that you are thinking of their baby(s). Thank you!

I wish you all peace and comfort through this hard time of year.

Catch Up

2010-12-06T12:59:00.000-08:00

I know I always say the same thing, but I'm having to catch up on my blog. I really like when I can blog every day. I use it as a journal of sorts. Not the kind of journal that has your innermost thoughts, but more of a documentation of our lives. That being said, I just can't always make it happen. Blogging is pretty low on the priority chain around here.

So, I'll play catch-up yet again and pledge (once again) to try and do a better job of staying on top of it!

Just a quick, funny Haileyism to tide you over: One of her favorite hobbiess:

Picking dead skin off Jeremy's {clean} feet, of course!

No More Monkeys

2010-11-26T15:22:00.000-08:00

Jumping On The ~~Bed~~ Hassock!

2010-11-25T20:11:00.000-08:00

Happy Thanksgiving!

I started to write a post about all the things that I'm thankful for, but I deleted it. It was turning into a repetitive list, and I was worried that I'd forget someone/something. I feel like recently I've been getting bogged down in the negative things. The things I wish I could change. I really try to see the positive in everything. In our darkest times in the hospital with Hailey or struggling financially or whatever it may be, it's easy to get down and feel sorry for ourselves. However, I'm learning that I can choose to dwell on the negative and be unhappy, or I can focus on the positive and try to make the best of things.

So today, I'm reflecting on all the good. All the love. All the support. All the things that I'm thankful for.

Christmas Cards

2010-11-20T18:22:00.000-08:00

I always struggle with Christmas Cards. What picture to use? With Jeremy and I, or just the kids? Include the angels or not? Then there are SO many things that you have to decide. Color scheme. Do they match? Are the festive without being freaky-festive? Are they religious, joyous, and full of cheer without puking tinsel when you open them?

This year none of that is my concern, because I'm going to let Shutterfly design them for me! I used to think that printed cards are the easy way out. That it's much more personal to fill out cards on my own. This year? Forget that! I need all the help I can get!

Here are a few of my favorite card choices!
JOY Nice and simple.

KEEP BELIEVING I like this one because you can use so many different pictures. Each kid separately, family together, include the family pet, whatever! I know I always have a hard time choosing the picture.

MOD SNOWFLAKES I think I like this one because it's girly without being over the top. It's still festive, and Jeremy can still have his dignity. (Somehow I don't think he'd go for a totally pink Christmas card!). As I said with "Keep Believing", I like that you can have different pictures on this one too.

Shutterfly doesn't just make photo prints and cards, they also have all kinds of other neat things too! My favorite are these cute, yet practical CALENDARSthat they have. Perfect gifts for grandparents, aunts or uncles!

I can't wait to pick out the cards that we will be sending this year :)

If you want to do this (write a post and get free cards for your friends and family),

you can apply HERE

HAPPY HOLIDAYS! (wow. I can't believe they're here already!)

What Happened?!?

2010-11-19T21:37:00.000-08:00

A Special Child

2010-11-18T03:32:00.001-08:00

You weren’t like other children,

And God was well aware,

You’d need a caring family,

With love enough to share.

And so He sent you to us,

And much to our surprise,

You haven’t been a challenge,

But a blessing in disguise.

Your winning smiles and laughter,

The pleasures you impart,

Far outweigh your special needs,

And melt the coldest heart.

We’re proud that we’ve been chosen,

To help you learn and grow,

The job that you have brought us,

Is more than you can know.

A precious gift from Heaven,

A treasure from above,

A child who’s taught us many things,

But most of all- “Real Love”

Thank, Coutrney!

We're Alive!

2010-11-17T19:43:00.000-08:00

Yes, we're alive. Yes, Hailey's home. Yes, I've been slacking. Yes, I'm sorry. We have been SO busy. Even more than usual. I'm having a hard time managing everything to be honest.

I have a lot of business to take care of, then I will try to catch up on things.

I need to say a big THANK YOU to my mom and Mama. They took care of JJ almost the whole time that I was in the hospital with Hailey and Jeremy was working/in school. We wouldn't have made it without you!

I also need to thank Kayla and Avery for visiting us in the hospital and bringing Hailey fun presents. Kayla, thank you also for your support both in the hospital and since! You're so positive and inspiring! (Kayla is currently fighting a cancerous brain tumor.)

Jill (and family). THANK YOU SO MUCH for the box of petshops you sent Hailey! We don't even "know" you, but are so touched and appreciative of your generosity!

Tina, Thank you SO MUCH for taking our pictures. You're so talented and amazing. You're so sweet and compassionate. Thank you for being so warm, supportive and loving! I'm truly blessed to have you in my life!

Kari-Thank you for looking for answers for us! I appreciate your determination!

Jeremy, thank you for being my rock. For coming to the hospital to help and support even when you need the support for yourself. For being strong when I can't. For making me laugh when I want to cry. For swearing when I hold it in. For being the constant through it all. I love you!

These are not the only people that we appreciate or would like to thank. I couldn't possibly thank you all. Thank you to everyone who has prayed for Hailey or sent positive thoughts. Thank you to those of you who have donated through our blog! We appreciate each and every one of you, and wish that we could thank each of you individually!

Happy Halloween.

2010-10-31T21:07:00.000-07:00

I was super emotional today about being in the hospital, but there's {obviously} nothing that we can do about it, so we made the best of it. Daddy was here with us for the day, and we just hung around. Hailey was still pretty out of it, but she loved "being butterfly" all day. Late this evening, my Mom brought JJ to the hospital to visit, and so that he and Hailey could at least see each other in their costumes.

Kisses for Daddy-I love my boys!

JJ was SO sweet sharing his candy with Hailey!

Love you, Baby Girl!

We're Baaaaaaaaaaaaaaaaaaaaaaaack!

2010-10-30T20:03:00.000-07:00

Yep, we're back in the hospital. Why, you ask? We were initially discharged Thursday afternoon. Hailey's wasn't even near where she usually is when she gets discharged (back to walking, talking, eating, playing etc), and we voiced our concerns to the "floor Dr", but we were discharged anyway. Thursday night, Hailey didn't sleep all night...she finally fell asleep in bed with me when Jeremy left for work. She slept on and off all day Friday, and the times when she was awake, she wasn't "there". She just stared blankly. Wouldn't talk, wouldn't respond if you called her name, nada. I decided that I would let her get some sleep and see how she was in the morning (yesterday). Well, yesterday was the same, even a little worse. Being in the hospital is really, really hard. It's hard on Hailey, it's hard on me staying with her, it's hard on JJ to be away from us and passed around, and it's hard on Jeremy. It just plain sucks. I was trying to avoid it. I was trying to convince myself that she was doing okay at home, but this morning we realized that she was getting worse. She was even less responsive and she was starting to hallucinate again. We made the hard, but necessary decision to bring Hailey back to the hospital.

We just got up to our room. Plan is to put Hailey back on steroids, and see how she does. We should know more tomorrow.

If you would, please say an extra prayer for Jeremy and I. This is really starting to take a toll. Thank you!

Thursday Evening Update

2010-10-28T21:30:00.001-07:00

We are home. To answer some of your quesitons:

No, Hailey isn't better.

No, Hailey wasn't ready to leave the hospital.

Yes, we're happy to be home, but it's overshadowed by the above two.

I am broken. Will write more when I can.

Wednesday Evening Update

2010-10-27T20:05:00.000-07:00

It's been another long day. Hailey did get a little bit of rest today, but it was very sporadic. She was in her crib most of the day. She is still very agitated, and it seems she's most comfortable propped in bed and being left alone. She will look at the TV or hold toys, but isn't playing much yet. Her favorite toys-her littlest petshops were stollen from our room last night, so she's unhappy about that. When she's in the hospital, she likes to dump them all over herself and hold them. We got some news that was hard to hear today...some testing that her neurologist would like her to have fun. Please pray for our peace through this as it's a lot to swallow. Here are some pictures of today:

Hailey and I got to visit with our favorite (exhausted looking) stud! He had school today, but came to see us before he went home. He watched a movie with Hailey, then had his nails done by his personal manicurist.

Two of my favorite 3:

I gave Hailey a bath tonight. It was exhausting...it's really hard to bathe her because she can't sit up on her own, so I have to hold her up while I bathe her. Usually when she's Encephalopathic, we bathe her in an infant tub, but we couldn't tonight. She didn't seem to phased, but I hope she feels better being all clean!

We're all hoping to get some rest tonight...we need it desperately! Thank you for your thoughts and prayers!

Tuesday Morning Update

2010-10-26T08:40:00.000-07:00

We're exhausted. Totally and completely. Have you ever heard of "ROID RAGE"? Well it's real. The side effects of the high-dose steroids Hailey's on are setting in. She's jittery, agitated, and not sleeping AT ALL. She's exhausted, I'm exhausted, we need rest. She is still agitated, combative, and unhappy most of the time. This morning she has been banging on a baby drum that the nurse found laying around here, but other than that she isn't playing. Even petshops aren't keeping her happy.

We don't have much of a plan, just waiting to see how she does.

As a side note, we're in the new PICU (Pediatric Intensive Care Unit) this time...it's much more bright but still sucks... One nice thing though, is that they have a Family Room that's sponsored by Ronald McDonald House. They have food and drinks for family, laundry facilities, computers you can use, books you can read, cabinets of things you might need (toiletries, free bibles etc), and are you ready for it? SHOWER rooms!!! This may sound small, but when you're in the hospital with your sick child, not sleeping, eating crap food and exhausted, a simple shower can be very relaxing!

Today is Jeremy's one day off, so both Hailey and I will be getting some relief! I will get to shower, Hailey will get to cuddle with Daddy, and hopefully get some rest.

Please keep the prayers coming! Thanks!

AGAIN

2010-10-25T06:07:00.000-07:00

Hailey's in ICU again. She's having her 9th Encephalopathy. This one is much worse than the last few have been. She has been combative, agitated, confused and irritable for the last 22 hours. I have been standing next to her crib keeping her contained. Literally. It's been hell. Feeling pretty frustrated, exhausted and hopeless.

Please pray.

Walk to Remember 2010

2010-10-19T21:34:00.000-07:00

As we have since Lillie died, we went to the Walk to Remember this year. (This was our third year). The weather was perfect, and my kids were happy the whole time. This year was (obviously) harder for me than the last two years, but I'm always glad that I go... This year, I was pissed. Pissed that I had a reason to be there. Pissed that I was only there with half of my family. Pissed that I don't have all my babies here with me.

While the names were being read, the woman sitting next to me (literally) fell over in my lap and had a seizure. We called 911, and it took from the L's-the end of the alphabet (names are read in alphabetical order by last name) to take care of her and for the paramedics to come, so we missed hearing the names and letting our balloons go, but we did them afterwards. Hailey was very excited to see someone else having a seizure. We talked about it a lot, and she was very interested! Like I said, I'm glad I went!

Ready to walk!

JJ was more concerned with the bubbles than what was going on:

Our balloons. Heaven-bound:

Little Miss Rockstar:

Love this one! JJ letting his balloons go:

There they go. . . up to Heaven:

Amazing, and heartbreaking at the same time:

Dove release:

Hailey's Story

2010-10-17T15:59:00.001-07:00

I have finally finished Hailey's story. Please check it out HERE Thanks!

No Words Necessary:

2010-10-14T15:00:00.000-07:00

Hailey's Story

2010-10-13T17:14:00.001-07:00

I have finally finished Hailey's story. Please check it out HERE Thanks!