Thursday, November 24, 2011

Happy Thanksgiving Little Turkey!

Missing my little girl big time today...


Ellie Bellie,
I can't believe it's already our second Thanksgiving without you... Last year I'd already bought your "1st Thanksgiving" outfit and little turkey hair bow... Max painted a turkey for you and we brought it out to the cemetery last week. Even though it's been fun to have everyone at our house today, there is obviously someone missing. I miss you. I know you would have loved all of the food and the awesome turkey cupcakes (decorated- not flavored) that Aunt Kerri made. I was really missing you last night so I was watching some of your videos- I am so thankful we have them. They remind me of all the little cute, adorable and funny things that you used to do... Ma and I are going shopping for Ellie's Light stuff tonight for all of the fun things we have planned for Ellie's Light this month... It's all for you baby girl. Every single bit of it. I love you so much! And even though you aren't here- you are.
Happy Thanksgiving Little Turkey!

video

Monday, November 21, 2011

So.....

Well it's not something that I'm really ready to share yet...




BUT, it's getting kind of hard to hide this...


And the reason for my quickly growing stomach IS-



That's right! TWINS!

This stupid picture will NOT rotate correctly when uploaded... 10wk 3D Ultrasound

These two will {hopefully} be joining our family in May. Their due date is May 31st, but they will likely make an appearance early to mid May. I will be 13 weeks on Thanksgiving and know that I should be relaxing a little bit now. But it's much easier said than done. I'm very worried. The anxiety is almost crippling and before each OB appt I'm sick to my stomach with nerves...
I went to my doctor today and she was able to hear both heartbeats with the doppler. I have strict instructions to gain more weight- even though I have been shoving food in already!- I want some big fat, chubby babies that don't have to spend anytime in a NICU.
The last 13 weeks have been very long... Between weeks 5- 11, I felt horrible. So tired, dizzy, nauseous and crabby. Having two in there has definitely made a difference. With Ellie and Max, I didn't feel great. But this time is a whole new ball game! It's been a struggle. Thankfully, the last week I have felt better so I hope it stays this way!
Our twins are di-di twins- meaning they have their own sac and placentas. For twins, it's the best case scenario- it's like having two separate pregnancies going on at the same time. But I am still considered high risk. After I reach 24 weeks, I will be monitored on a more intense schedule. At 24 weeks I will start every two week appts, and at 30 weeks, I start weekly ultrasounds... Thankfully, I have the best OB who understands exactly what we've been through with infertility treatments, Max's autism and Ellie's passing. She is not willing to feed into my anxieties but is willing to whatever we need to make me feel good about things. It's a very good mix and I am so glad I found her 5 years ago!
Until I was actually pregnant, I never thought that losing Ellie would affect how I feel about any future pregnancies as much as it has. With both kids I was hesistant at first, but excited beyond belief. This time, is much different. I want to be excited, but I am just not convinced that everything is going to be ok. I am following all the pregnancy rules and doing what I should, especially in the way of growing TWO babies, but there is a total disconnect. I have felt them move a couple of times, but nothing consistent. I hope once they start moving more, it will seem more real... So yes, I know things will likely be fine. But Ellie was perfectly healthy (so we thought) until the day she died, so it's a little harder to convince me this time around...
I am hoping that by sharing the news- which we had to do because there's really no hiding my gigantic stomach anymore- it gets me a little more excited. So like any person that hasn't had their heart ripped out would do... here's some other pictures!

Baby A- aka Pebbles

Baby B- aka Bam-Bam. (seriously Blogger!) 
 So I had an ultrasound at 10 weeks (I convinced my doctor it was necessary since I lost Ellie's twin between 8-9 weeks- I needed the peace of mind!). My mom came with me since Dave was at work and we laughed as we watched Baby B kick Baby A over and over again... They are already fighting!

12 weeks and One Day... yeah I'm going to be GIGANTIC!!

Saturday, November 19, 2011

The Wild World of Autism

I've been a bad blogger lately... a very bad blogger... it just seems like there has been so much going on lately, that by the end of the night, I just don't have the energy to put together any sort of coherent thought- and forget about writing it down! I think a big part of it has really been a sort of mental shut down after Ellie's Angelversary. It's been a horribly long year and I think your body and mind can only handle so much before it just takes a little sort of vacation... I'm not saying I've had any kind of mental break or anything, but I just found it easier to check out of this little world for a while. It was also very important for us to put some time and energy into other things going on in our lives.
 Max was given an educational diagnosis of ASD (autism spectrum disorder) at about the same time Ellie passed away. Double whammy. Over the last year, we have done as much as we have been able to wrap our minds around to help Max. We got him into the ASD program in local school district and private speech and OT twice a week. These people have been true God sends- we have learned so much from them. Max has made incredible improvements in the last year, but with ASD, there are a million and one possible treatment options...
 Over the last year I have spent some time researching other options or complimentary treatment options. There is ABA therapy, RDI therapy, diet options, biofeedback, chiropractic care, on and on... The problem is that there is little research on most of these proving whether or not they are effective, therefore insurance isn't likely to pay for it. Also, and this is a very important piece of the puzzle- every single person with autism is different. That's why it's a spectrum disorder. ASD means something different for everyone. So, just because one course of treatment worked for one person, doesn't mean that it will work for another. It makes it very hard to decide what is best for your child.

The ASD world is one where everyone has an opinion, but doesn't necessarily know the right thing to do, place to start or how to help. Yeah... Because Max only had an educational diagnosis, we needed to get him a medical diagnosis so that we had a higher chance of insurance paying for treatment options. This is NO easy task... Last May, I filled out a couple hours worth of paperwork, had his teacher fill out a super long packet, collected all documentation of any testing he had done up to that point at sent it in to the U of M at their developmental behavioral and autism clinic. I was promptly told that the wait would be six to nine months to be seen. We finally got our appointments in the first part of November- they originally tried to get us to come in on Oct. 24th and 25th! I laughed... There were four appointments..
.
What a nightmare! The first day consisted of me putting Max in the car at 7:00am to sit in traffic for an hour and a half. The directions sent to me by the clinic were completely wrong due to construction. There were students walking to class everywhere. There was only a few parking spots left in the ramp. I knew we were not to be late or they would cancel the appointment. So with minutes to spare, I am hauling ass down the street with Max in the stroller, we find the building (no thanks to more crappy directions!) only to find that there is only one accessible entrance- on the other side of the building! I say screw it!, kick Max out of the stroller, make him walk up the stairs while I haul the stroller up... We fly upstairs and into the lobby with five minutes to spare in the "ten minutes late" deadline... What followed was three hours (yes I said three HOURS) of developmental and cognitive testing on a three year old in a tiny room with two strangers and two small windows...
It was awful. Max was stressed, I was stressed. Three hours is way to long for a 10 year old to sit in a chair and focus on a test. No shit he quit cooperating and didn't pass. He totally checked out! Thankfully, we've been through the standardized testing process before and I knew what was coming. Max did do tons better than he did a year ago when we did the initial testing. A year ago, he just screamed. This time, he participated the best a three year old could...
A week later, with Dave along this time!, we went back for the last three appointments. The first appointment was three more hours of social skills testing. Less stressful than last time because it was more play, but Max's issues became totally obvious. It's hard to watch, especially because it's a standardized test and we can't say anything to help him. After a lunch break, we met with a neurologist for a very short appointment. Thankfully, Dave's mom came to take Max home while Dave and I went to the last appointment.
During that appointment, we got the testing results and treatment recommendations. We had been told by several people to expect a certain treatment recommendation and it was exactly what they told us. They said they would classify Max as having high functioning ASD. They suggested that we discontinue his private therapy and time in the ASD program with the school district. They want us to put him in ABA therapy for forty hours a week. They want us to send our child somewhere else for 40 per week! Ha!

Quick ABA therapy description... Basically ABA therapy (Applied Behavior Analysis) is behavior modification therapy. It's training the child to keep good or acceptable behaviors while discouraging negative behaviors. Programs are generally 20-40 hours per week. This is because the program is only effective if the ideas are continually reinforced... There are options for in-home ABA therapy. But this means having a stranger in your house for 20- 40 hours a week micro-managing your child.
The effectiveness of ABA therapy is well documented. Some insurance companies pay for it. But most don't. Including ours. ABA therapy around here- typically runs $150 per hour. That's $6000 per week, $312,000 per year. Who can do that?! There are certain forms of government assistance that will help pay for this treatment, your child qualifies with just their diagnosis but you pay based on what you make... It can take months to qualify for this assistance, only to find out you make too much to afford it. Seriously, we pay taxes but don't get to use the services we pay for?!
Anyways... obviously we would do whatever we need to to help Max. But we aren't really convinced that ABA therapy is the right thing for him. A lot of the studies supporting ABA therapy do not specify at what level their subjects are functioning at. As I said earlier, each person with ASD is different, so in my opinion, that makes a difference in whether ABA therapy can be generalized to an effective therapy for everyone with ASD.
Max is smart. We were told that he is at average cognitive level, if not a little higher, than others his age. When he gets something, he gets it. It does take repetition. In this case, ABA would be helpful for him. However, Max does a lot of scripting with his language- meaning he repeats what he's heard on TV, continually says it and uses it as his way of talking... For him to be in the non-stop repititive environment of ABA therapy, seems counter-productive...
And if he is always in the same environment, how is he going to learn to generalize what he's learned. Just because he can do something within our house or at a center, doesn't mean he could apply it to the real world... ABA therapy is a lot of "DO THIS" and "GET THIS." Which is great at first, but the real world isn't always so predictable. And Max has a very hard time with anything that doesn't go exactly the way he anticipated. I don't see how putting him such a controlled environment could remedy this problem. Right now, he goes to two different places for help, plus home. He works with different people who have different approaches... I feel like this is much more realistic and in the end, more beneficial for him.
Plus, he loves school. He loves therapy. We have seen incredible changes since he started less than a year ago. The people that work with him really care about him. They are warm and welcoming, and I completely trust them with him...

So now what?! The "experts" tell us completely the opposite of what we believe...

But, Dave and I are really the experts. We know Max. We are with him everyday and know how he learns best. After being a nurse in a pediatric hospital and working with kids who have long term illnesses, I learned from those parents, that you have to advocate for your child. Yes, the doctors and nurses went to school, but as a parent, it's you who knows your child. There is a lot to be said for a parent's instinct and gut-feeling. After everything that happened with Ellie, this only became more obvious. Having a special needs child means that we are the ones that speak for Max. Yes, we have had more specialists in our lives than we ever anticipated, but I've learned that I know best.
So for now, Max is staying where he is. We are going to look into part-time in-home ABA therapy for when he is done napping in the afternoon. We will keep looking into things like diet supplementation, social groups, horse therapy, etc. We will keep taking all the information and deciding whether it is best for Max.

I guess my point in all of this is, just because you know someone with autism, doesn't mean you know another person with autism.. I had coffee with three other moms from Max's school the other day, and we were talking about our kids. They are all in the ASD program- all on the spectrum. But they are so different. It is so difficult and exhausting to navigate through the autism world. No one can tell you what's best for your kid. It's confusing and you constantly worry if you are making the right choice. Having autism is not like having diabetes. There are no clear symptoms, there are no clear treatments. It's kind of a just a big cluster...

Monday, November 7, 2011

Hospital Donation


Today we brought in our donation to Children's Hospital in Minneapolis, the place where we said good-bye... A lot of time, energy and money was spent on this donation and I pray that the hospital uses it the way it was intended. I speak from experience when I say that they need these things. Families should not be leaving the hospital with their child's things in plastic bags or their child's hair in a specimen bag. Families need to leave the hospital knowing that their child mattered. That their child was cared for and respected. That is our goal. The goal of the memory pouches is for them to be about that child. A place for families to keep those last few memories that mean so much... I look back on the experience we had, and I don't feel like Ellie was respected or cared for (once she had passed that is. While still alive- she received the best care we could ask for). I don't want another parent to ever have to feel that...
So today Max, my cousin Ang, and friend/ board member, Lo, and I brought what we had downtown. We dropped them off at the front door, explained it all to the bereavement coordinator, and now just hope that it makes a difference. Even if it only keeps one family from feeling the way we did, then I feel good about it. I feel good about putting Ellie's name on it, especially the stuffed animals. I feel like Ellie would really love Belle's Buddies, and I hope all of the adorable, cuddly Buddies provide comfort to the siblings that are so often overlooked- they matter too.

Our donation to the hospital today:
  • 50 memory pouches: each with a canvas personal belonging bag, cloth memory pouch, photo album with SD card envelope, journal, candle, two touchstones, bracelet set, lock of hair box
  • 100 Buddies for grieving siblings
  • 3 value size boxes of Model Magic, to be used for hand and footprints
  • 25 Faces of Loss, Faces of Hope postcards for families with preemies and infants that pass away
Of course, there are pictures...

For the memory pouches, touchstones from Midnight Orange, photo albums, votive candles, personal canvas personal belonging  bags, Lock of Hair boxes, bracelet sets from plain2pretty

Just some of the pouches during the organization process...

 One of the girls memory pouches

 A boys memory pouch

 Belle's Buddies: All tagged and ready for siblings!

Hand and Footprint Kits

Everything all ready to go!

 Making the drop!
 Lo, Max and I


Max playing with Ang while I talk to the bereavement coordinator...


Ellie, It's all for you Peanut. All the work, the time, the energy, the money- all of it is for you little girl. I hope you know how much we miss you and how loved you still are. I think about you all the time. Love you so much!!

Sunday, November 6, 2011

I'm Back

I took a little bit of a break from my blog... the last few weeks were extremely exhausting and stressful. Just looking through Ellie's pictures was more difficult than I anticipated. Of course, I didn't need to share those pictures of Ellie's last day, her visitation and funeral, but I thought it was important. I think that too often people forget that babies are people too. Just because Ellie was only here for 250 days, doesn't mean she was any less loved or cared for, or any less important than a 98 year old. Our goal with Ellie's Light is to soften the blow to families who are experiencing this worst kind of pain, and if people don't understand what these families go through, than we won't ever accomplish our goal.
I never wanted Ellie to serve as a "lesson." I don't like to hear that people have learned so much from our situation. When we met Ellie for the first time on Jan 15th, 2010, I never thought her life would be what it is now. But it is... Ellie's pictures from the last day of her life won't ever be shown in their entirety. We probably won't ever show them again. They aren't our girl. Yes, ambulances, tubes, bags of blood, autopsy, casket and funeral are all words that are a part of Ellie's story now. But they are not Ellie's story. They are one week of Ellie's story...
Ellie's story is one of happiness, joy and love. Our girl was silly, smart and sweet. And that is why the other part of Ellie's Light is spreading joy. That part is for us. It is for us to do something that reminds of our girl. Being able to spend tons of money on Christmas presents for kids that may otherwise not get many, is an amazing feeling. We know that Ellie would be thrilled. Ellie was a little stinker, we know she would have given us a lot of grief in her teenage years. She was sneaky and a little trickster already, at just nine months old. But she was so sweet. She loved to be cuddled and snuggled. She loved people. She loved laughter and smiles. Making other people happy, especially kids, is the perfect way to honor Ellie.
Tomorrow we are bringing our big donation to the Children's Hospital for the bereavement program and on December 3rd we are serving dinner at the Ronald McDonald House and bringing things for the ICU families. But what I'm really excited for is the Toys for Tots drive. To be able to go buy a bunch of toys and do it in our girl's memory is amazing. We are so grateful to be able to do this for her...



My good friend and old roommate, Lo, did something very special on Belle's Angelversary and I have been waiting to share it until all the other stuff had passed. Lo did a day of Random Acts of Kindness in honor of Ellie! I love it! Here's the pictures she sent us...


She put change on bikes, soda machines, etc for people to use. She also brought donuts in for her clients- all while sporting her Ellie's Light shirt! Awesome! Thanks Lo!

My mom's work also donated 40 Buddies!! Thank you!!

Our friends, Court and Aaron, wrote Ellie's name in the sand on their vacation at Elysium Beach, Paphos Cyprus. Thanks guys!


I also have to say thank you to everyone who showed us so much love and support during this last very difficult month. It was the only reason we survived... I am so glad to have it behind us now, but now we are left trying to make sense of being without Ellie for over a year...