Jello

There was a time about a year ago when I sat with Olivia at the kitchen table trying to get her to say jello. I sat there patiently encouraging her, trying to help her until I was crying. She loves jello and she was trying to say it but just couldn't get the word out. Now I'm listening to my beautiful little girl who just had her tonsils out yesterday and spent the night in the ICU sitting at that same kitchen table cheerfully talking to her orange jello. She's not just saying jello but she's using two words to talk about her yummy jello. She's eating it with a spoon, all by herself. Please pray that they approve her transplant, we should hear something today.

No More Tonsils

Olivia had her tonsils and adenoids removed this morning (She'd had her adenoids initially removed last year but they grew back so they were removed again). She's doing well but the tonsils were so large that they are keeping her in ICU overnight just to make sure that she doesn't have any trouble breathing. The nurses are all very impressed with how well she's doing, she's had 4 Popsicles, juice, jello, and macaroni and cheese. I'm so thankful that the nurses today were so accommodating. I don't think that infants are really allowed in ICU but Peter was with us all day, charming the pants off of all the nurses. Mike is staying with Olivia tonight and it's killing me that I'm not there. When I was pregnant with Peter I remember being worried that I wouldn't have enough love to go around. I love Olivia so much, I couldn't imagine that I could possibly share that love with another child. Of course everyone I know who has multiple children explained that your love just grows. They were completely right. I love Peter just as much as I love Olivia. What they didn't tell me is that there would be times when I would have to choose between my children and it's the absolute worst feeling in the world. I know that Mike is taking great care of Olivia and she's enjoying this special time with him. I know that I'm happy that I'm able to be here snuggling with Peter. But this mother guilt is killing me! I just keep telling myself that you do the best with what you have and I'm so glad that Mike is here right now so that he can be with Olivia.

Let's Be Specific

If you've been following the blog you know that we're trying to get our insurance company to authorize a transplant for Olivia. At this point our insurance company has denied our initial request and we're currently appealing their decision. This part of the appeal process should take about 72 hours. Olivia's case is being sent to a peer review board. A practicing medical doctor (who is not affiliated with our insurance company) will review Olivia's history and the transplant request and then make a decision about wether or not the transplant will be authorized. Please pray that the doctor who is randomly selected to make this decision gives it serious thought and consideration. Please pray that God gives them wisdom and understanding and that they approve Olivia's transplant. This process started this morning so hopefully we should know something by Thursday so check back then for updates.

Tulips

Since Mike got to spend all day on Saturday snowboarding in Whistler he cheerfully agreed to stop by the tulip festival on the way home. This truly was a labor of love, what guy wants to drive out of the way to look at a field of flowers in the middle of no where? Mike did it with a smile on his face and even bought me some beautiful tulips to take home.





To see more tulip pictures click on the shutterfly link on the post below.

Canadian Weekend

After everything going on around here over the last couple of weeks we needed a weekend away. Mike was able to leave work early on Friday and by 3:30 we were crossing the US border into Canada. We went to Whistler for the weekend and had a fantastic time. Here are a few of my favorite pictures from the weekend and if you're interested on seeing more pictures you can check out the shutterfly link below.



Link to more photos here:

Shutterfly Photo Link

Told you

We often have "phone issues" in our house. Olivia loves to talk on the phone. She is constantly taking our cell phones and accidentally calling people, she even called 911 from my cell phone accidentally, twice. Olivia has decided that it's her personal mission to bring me a phone whenever it starts ringing (because inevitably the minute I sit down to nurse Peter is when the phone starts to ring). Whenever she hears a phone ringing she stops whatever she's doing and yells "PHONE" then starts running around the house looking for it. The phones are left off the charger and not returned to their home base and they die. There's always something going on.

Yesterday was one of those days when the phone was ringing off the hook. We're working on getting our appeal information together to appeal the insurance company's decision to deny the transplant treatment for Olivia. We're trying to schedule her evaluations for the school district before the end of the school year. We're scheduling doctors appointments for Olivia and Peter. People seemed to be calling all day and I couldn't find a single phone! I kept asking Olivia where the phones were. She kept running to the back yard and saying "outside". The weather has been beautiful here so we've been spending a lot of time outside but yesterday was chilly and overcast so I told her we couldn't play outside. I tore apart the house looking for the phone. I moved all the furniture in the living room thinking it had fallen under a couch or something but I never found the phone. After the kids went to sleep Mike and I both searched the house but we never found it.

This morning I went in to get Olivia and I asked her again if she had seen the phone. She ran to her window, which looks out over the back yard, and calmly points down at her sandbox and said "Phone outside". Well, what do you know....the phone was right there in the sandbox. I said Olivia why she didn't tell mommy the phone was outside when we were searching for it and she responded by saying "told you" and laughing hysterically. I guess she did! Good thing it didn't rain last night!

So if you called yesterday and I didn't answer you can try again today, we have found the phone :)

More Prayers Please

We found out on Friday afternoon that our insurange company did not approve our treatment request for a blood-derived peripheral stem cell transplantation because it is not established as a proven treatment. The silver lining is that it was denied with appeal rights (appearently appeal rights aren't always granted). So we're fighting this, and fighting hard. Please pray that the insurance company will reverse their decision and approve the transplant!

What's the protocol here?

I HATE our neighbors dogs. Since the day they moved in their two little dogs bark almost constantly. They live outside 24/7 and they bark at every little thing. Every time someone walks in front of their house, they bark. Every time a car drives down the ally, they bark. Every time we open our garage door, they bark. They bark from 3 to 3:30 pm every afternoon because the middle school is a couple of blocks away and kids walk by on their way home. There is an open field behind our house and when kids play back there the dogs bark constantly.

When they first moved in this past summer Mike was ready to call the cops the first day. I talked him out of it, saying that the dogs were probably just scared because it was a new place and that they would calm down when they got used to it. But they never stopped. They still bark constantly. We've gone over the house to knock on the door but no one ever seems to be home. We've called the police but I'm sure some annoying dogs are not high on their priority list.

I would never dream of disciplining someone else's child at the playground, what's the protocol with other people's dogs? When I was trying to put Olivia down for her nap earlier the dogs were barking like crazy so I stuck my head out the window and told them to hush. These dogs are in their own yard so I can see how it could be a total invasion of privacy for me to yell at someone else's dog but these dogs are obnoxious! Any advice?

Happy Easter

Since Mike was out of town last week we decided to wait until this weekend to celebrate Easter, the wait was well worth it! I didn't go shopping for goodies for the kids Easter baskets until after the real Easter so I got everything for 50-75% off! The weather here this weekend was beautiful! We got to go to mass together then we came home for an egg hunt in our backyard then we had a yummy dinner of honey baked ham, mashed potatoes, asparagus and strawberry shortcake. Here are just a few of my favorite pics from the day.

Bright and Early

Olivia woke up bright and early this morning at 7:10 am. I brought her into bed with me hoping that she'd settle down and sleep for a few more minutes. Yeah, right! Olivia insisted on singing the alphabet somg in its entirety followed by the "wheels on the bus" which included her smacking me in the head several times while she was doing the hand motions. I tell her it's still time to go night night and she responded with "no mama, morning eat cereal." I told her we would go downstairs and eat cereal in just a minute, in response she stood up on the bed and said "no NOW". Then she climbed down from the bed, went downstairs, grabbed the box of cherrios from the pantry and climbed back into bed with me. Before I could tell her that we don't eat cereal in bed she said "share please". I am so excited that used FIVE words all at once that I totally forgive the no food in bed rule and we had a fabulous breakfast in bed together!

Car Envy Reality Check

Since we became a family of 4 several months ago we've been going back and forth about upgrading to a larger car. It's hard to believe that we've had the Durango for almost 6 years now. It's been a good reliable car but it's got almost 200,000 miles on it. We paid the car off a while ago and it's been really nice to just have one car payment. The Audi is a little small though and we've definitely been experiencing some car envy when we see the new energy and fuel efficient SUV's and Crossovers. We've been joking about how we should do our part to stimulate the economy and upgrade to a larger car. For the last week I've been driving the Audi around because of the flat tire situation. I've discovered that it's really not so bad and I'm actually enjoying driving in the little "zoom zoom" car. As if I needed more of a reality check I saw this car in front of me the other day at the Starbucks drive through. It's hard to see but there are 3 car seats in the back of this little car. If they can cram three car seats in the back then we should definitely be able to deal with two! Thanks for the reality check!

Child Saftey Locks-Public Service Announcement

So after charging the car battery all night last night I was looking forward to our trip to stock up on all the sale-priced Easter goodies this morning. The car started just fine but I wanted to make sure and drive for a good 20 or 30 minutes so that the battery could continue to charge. So there we were in the car driving down the interstate to charge the battery. Olivia is a little fussy because she generally likes to listen to the radio when we are in the car so to keep her happy we were singing "Old MacDonald" at the top of our lungs. Then I hear Olivia say "open please" and before I can even ask what it is that she wants opened I hear her open the car door. She's buckled into her car seat so I'm not worried that she will actually fall out but then again we are going down the road at 60 mph. I didn't even know she could reach the door handle, let alone open it. Remember we are driving the Audi because the Durango was having tire issues last week. I know that she can't reach the door handle in the Durango but obviously she can in the Audi. I know it's completely irrational but I had always been a little afraid that I would somehow get locked inside the car if I turned the child safety locks on. Obviously I have gotten over this irrational fear and the child safety locks are fully engaged.

Looking forward to Easter

No, you didn't read the title wrong. We are still looking forward to Easter at the Leiva house. Since Mike is out of town we are celebrating Easter next weekend after he gets home. This has been a really trying week with a lot of ups and downs. We started off the week by getting a flat tire just hours after Mike left. The weather during the first part of the week was absolutely beautiful so we were spending lots of time outside. Olivia was argumentative and temperamental exhibiting all the signs of the "terrible twos". We worked a lot on discipline this week and listening to each other. Olivia has added a lot of words to her vocabulary this past week and she has started to sing some of her favorite songs. She spent a lot of time in "time out" this week but she has learned to sort and pick up all of her toys when I start singing the clean-up time song. We added a new member to our family, a little beta fish, Olivia named him Jack. The lights were left on in the car all night yesterday so I woke up to find the car battery completely dead. No church for us. After spending a couple of hours cleaning out the garage I found the electric battery charger but at least the garage is clean.

I am really looking forward to hitting the after-Easter sales tomorrow so that I can load up on goodies for Olivia and Peter's Easter baskets. I hope that everyone else had a good Easter!

A certain little someone

found their toes!

Isn't he the cutest!

North Carolina-the Medical stuff

So I posted last week about the fun parts of our trip to North Carolina, today's post is about all the medical stuff.

We spent 3 very full days in North Carolina. On Monday we spent all day at the Center for Development and Learning at UNC-Chapel Hill. It was a long day but it was a great experience for us. The specialists we've seen at Seattle Children's Hospital had seen other children with MPS disorders but never any with MPS III so it was really rewarding for Mike and I to discuss Olivia with doctors who had seen so many other kids with MPS III type B. This was the very first time that we were able to get a sense for how Olivia is progressing compared with other kids who have Sanfilippo Syndrome. Olivia met with speech therapists, audiologists, a physical therapist, an occupational therapist, and a pediatrician. The team that evaluated her met together to share their findings while we got a quick lunch break and then we all meet together again for them to go over their findings. It was a really long day, we started at 8am and didn't leave until after 5pm! We took a lot of "tips" away from that meeting, things that we can start working on right now, reguardless if we are able to move forward with the clinical trial. We learned that Olivia needs hearing aids, we learned some stretches that we can do with her to help Olivia retain her mobility, we learned that developmentally Olivia is just a few months behind other kids her age but she still falls within the range of normal for her age group.

The second and third days we went to the Children's Health Center at Duke University Medical Center. We met with the doctors that are running the clinical trial. We spent a long time discussing the treatment and what it entails. We toured the Pediatric Bone Marrow Transplant Unit at Duke. We met with a social worker and Olivia had some blood work done. We spent a lot of time talking with various doctors about what we could expect for Olivia if we do go through with the treatment and what to expect if we do not go through with the treatment.

So where are we now.......right now Olivia does qualify for the treatment but we would need to get moving, we only have till August! Kids start to display more serious physical symptoms after they turn 3 and Olivia will be 3 this July so if we haven't started by August then the doctors would not recommend allowing her to go through the treatment. We decided that we do want to go through with the treatment and now we are stuck waiting. We have to wait to see if our insurance company will cover the treatment and we're waiting to see if Mike can get reassigned to Ft. Bragg so that at least we'd be living in the same state. So keep your fingers and toes crossed folks and pray that the insurance company will cover the treatment!

Oh and the treatment.........we're hoping that the treatment would heal Olivia physiologically, that it would keep the disease from progressing and repair the damage that has been done. Cognitivly it's another story, ideally the treatment would stop the progression of the disease (meaning it would keep Olivia from regressing) there may be some modest cognitive development but that's not very likely. The treament is harsh. Olivia and I would live in the Pediatric Bone Marrow Unit at Duke for 6-8 weeks. Olivia would go through 8 days of really intense chemotherapy to completely destroy her immune system. Then the would do a blood transplant using umbillical cord blood that has been donated, then we would stay in the hospital until her immune system is strong enough to handle being out of the hospital and we could move into an apartment within 10 minutes of the hospital for about 4 months. Olivia would have to go back to the hospital for several hours every day so that they can continue to monitor her. After about 6 months we would be allowed to move away from the hospital (hopefully to Ft. Bragg). Olivia would be on anti-rejection medicines (that compromise her immune system) to make sure that her body doesn't reject the transplant for at least a year. It's certainly not an easy solution but we are confident that untimately it will improve Olivia's quality of life!

Wow, are you as exhausted from reading all of that as I am from typing it? Please don't be afraid to call or email us. Of course you won't know what to say, most of the time we don't know what to say either! Being parents of a child with special needs is tough. We know that all of our friends and family want to help and there will be plenty of ways that you can do that, don't worry we will let you know! For right now just pray that the insurance company will approve the treatment and that the Army will reassign Mike to Ft. Bragg!

The Terrible Awful No Good Very Bad Day...

do you remember that book? I love it but I feel like I've been living it for the last 24 hours. Last night Olivia didn't sleep, I don't mean that it took her a while to sleep or that she was fussy and didn't sleep well, I mean that she didn't sleep. I put her in bed around 8pm at 11pm she was still awake. I laid down with her in her bed for about an hour but she still didn't fall asleep. I wasn't comfortable in her bed and I didn't have the baby monitor and I was worried about hearing Peter so we moved into my bed. It's a super special treat for Olivia to be allowed in our bed but she still didn't sleep. I would doze off a little bit but wake up to Olivia sitting up in bed, crawling around, or talking. Finally at 4am I was exhausted and needed to get a little sleep so I put her back in her bed. Of course she didn't go to sleep and when Peter woke up at 6am Olivia was still wide awake. I am convinced that Olivia didn't sleep at all last night. As a result of our sleepless night Olivia was not her usual happy self, she was less than cooperative today and I was less patient.

At least Peter slept through the night but he's been a little nut today also! He's normally so happy but he had a rotten day, he's teething and he's got gas. He cried today for 30 minutes straight, I couldn't do anything to console him which of course just makes me miserable. My poor baby! He got tylenol and baby orajel and then some gas drops.

My cell phone absolutely sucks and I can only talk on it when it's plugged in. A good friend called today but I couldn't talk because my phone died. Mike is in Oklahoma for a couple of weeks for a class and we got a flat tire just hours after he left.

In a last ditch effort to salvage our terrible day we set out for a walk. Olivia whined the entire time. Peter's eyes were all swollen from his earlier crying fit but during our walk they became red and watery so now I'm worried that he's got allergies.

Thank goodness that Olivia and Peter are asleep, lets hope it stays that way!

In case you just can't get enough

I posted some pictures on shutterfly....

share.shutterfly.com/action/welcome?sid=1AcNWTRm5ZsWIj

Good Morning, Olivia Style

I thought that Olivia was sleeping unusually late so I decided to go check on her and this is what I found....
she was happily singing the "A,B,C" song to her self.
Let me remind you that Olivia is not potty trained. Apparently this morning she woke up and decided that she didn't want to wear her diaper anymore so she took it off and put it neatly in her dirty clothes hamper.

and she helped herself to a pair of big girl training underwear from her top dresser drawer.

Suprisingly enough she was dry and I couldn't find any accidents anywhere in her room. When I told her good morning she happily responded with "morning mama", "go potty please". And we did.

All about Peter

Peter had his 4 month well baby check-up last week. Peter is such a lovable little guy. He's so low maintenance. He's sleeping through the night now and he just started rice cereal. He weighs 15 lbs 9 ounces now (Olivia didn't weigh that much when she was 6 months old) and he's 23 inches long.

Peter is an incredibly laid back little guy. He's content to go anywhere as long as we bring his favorite little toys along. He loves watching Olivia and I love watching the two of them entertain each other. Here's an adorable clip of Mike and Peter discussing the important things in life (apparently those are beer, girls, and jobs). In the background you can hear Olivia begging to go "up please please" because she is feeling like she's being left out of the fun.