Monday, November 29, 2010

Pain in the....

Well I had a lot of posts planned out for Thanksgiving; things I'm thankful for, fun with family, tasty treats but unfortunately things didn't go as planned. We had planned to go to PA and things were going better than planned. We left early, traffic wasn't too bad except there were a lot of accidents. 
Yes, things were going very well until we crossed the Connecticut border. I'm not sure if you're familiar with a Chevy H.H.R. but the dome lights are pretty much in the trunk area. I had just set up Amber's feed bag and was trying to turn the lights off. My arm was on the drivers seat under the head rest when we hit a bump and I fell into my arm. At least I think I did I don't really remember, the only thing I do remember is a really intense pain and not being able to move my arm or straighten up.  
We changed courses and headed straight for the nearest E.R. I was convince I had dislocated my shoulder blade (if that's even possible) it felt like my ribs were trying to pry my shoulder blade off the rest of my skeleton. 
After much poking, prodding and very painful x-rays the verdict is a strained shoulder or possibly a pulled ligament. It's been almost a week and unfortunately my ribs are still trying to get rid of my shoulder blade, my entire right shoulder/side hurt and it feels like my funny bone has been hit/my hand goes numb when I move my arm certain ways. Thankfully I'm on good pain meds, unfortunately that's why I haven't been posting. Tomorrow I see my Dr and hopefully everything will get straightened out!
I really miss being able to take care of Amber : ( 
She's in good hands,
but I still miss snuggling with her : (

I'm very thankful for my wonderful mom and husband who have been taking great care of Amber and I, believe it or not we're not that easy sometimes! 
Typing isn't really easy but don't worry we've been taking lots of videos so if all works out  it will be mostly picture or video posts until things get fixed. 

Monday, November 22, 2010

And She's Off!!

Last week was kind of a drag. After being advised by her cardiologist we've decided to not go ahead with heart surgery for Amber. It was a tough decision to make and I'm having a hard time with the fact that there is nothing we can do for her.

For good we got the ok to start giving her baby food again! She was kind of skeptical of it the first day but now she's loving it again. We'll also be changing up her feeding schedule again. In the next couple of weeks she'll be moving on to big girl formula during the day and pedialight at night. We've discovered that when she has pedialight at night she's much more active during the day and looks a lot better. With this new schedule she'll be getting more food by mouth and it will be a higher calorie so it will even out any extra calories burned by mouth eating.

The best news I have for you which totally makes up for such a crappy week last week is; Amber's therapist dropped off a baby walker on Friday! She tried it out on Friday and loved just being able to stand! The therapist told us it would probably take a while before she started moving in it. We didn't get a chance to put her in it all weekend but today we put her and guess what.....she walked across the kitchen floor! We were totally shocked! I could not be more proud of her!

Sorry it's sideways I was so excited I didn't even think that I wouldn't be able to flip it. Hopefully the tech guy can work his magic and fix it for me.

I could watch this over and over again! She went all the way back twice before she got really tired out but her face is priceless! She is so happy to be able to move around. Pretty soon she'll be all over the house.

Wednesday, November 17, 2010


Amber is getting to be a big grown up girl. 
She loves talking on the phone.
Watching Sesame Street videos.
Chatting our ears off.

It seems like years ago that she was my little lump.
So tiny and precious with that new baby smell
Hardly saying a peep 
She still makes adorable faces and loves to be snuggled, that I am very thankful of.
I do miss hats and swaddling.
I really miss all those new baby things but I do love seeing her become her own little person.

Can you tell I was going through old photos today?

Monday, November 15, 2010


 Two years ago I married my best friend. 

And I would say "I DO" again in a heartbeat! 
I loved you then and I'll love you forever.
Happy Anniversary!

And some day I'll get around to looking at our professional wedding pictures!

Saturday, November 13, 2010

The Best Burger Baby!

Yup this is another cooking post! I've been on a cooking kick lately to make up for a few really bad weeks where all I ate was candy and pickles. I'm an emotional eater and I figure if I'm going to be eating a lot I might as well be eating good things! So here is another easy, tasty recipe!
We'll be more witty this time and call it the...Bunny Burger!
The truth is it's not that pretty.

What's In It :
  • Put your hamburger in a bowl
  • Dump about half a jar of salsa in 
  • Grate one carrot on top of it (I used the medium side but I think next time I'll use a smaller side so you don't see as much carrot in it)
  • Dump some grated cheese in not too much though (I'll confess I used the rest of a bag of Mexican cheese I had in the fridge)
  • Mix it together and form your patties
  • Throw them in the pan and cook it up like you would any other burger
To Serve : 
  • Put them on a bun with whatever condiments you like (not toothpaste!) I suggest the usual ketchup, mustard, mayonnaise, ranch dressing and I haven't tried it yet but I bet sliced avocado would be great on top! 
There you go another quick and easy one for you arsenal! I don't know about you but I'm excited to see what I come up with next! I also promise to get back to talking about Amber too!!

Friday, November 12, 2010

Olive Garden Eat Your Heart Out!

It's very rare that I can actually make an edible dinner. By chance I happened to make this very tasty combination. Twice actually so I think it's safe enough to share with you!
We'll call it....Lemon Chicken Pasta.
I'm not great with timing in cooking, as in when you should start things so they end close together. I'll tell you how to make each part but it's up to you on what you want to do first. I also eye ball things (usually why it's not edible) so I don't have the exact measurements to give you.

  • Put some oil in the pan (maybe about 1 TBS) roll it around to cover the pan
  • Shake out some Rotisserie Chicken spice and Mrs. Dash original blend 
  • Squeeze a lemon slice over the pan, sometimes this spits a lot 
  • Shake the spices and squeeze lemon over the chicken before or after you put it in the pan is up to you
  • Cook it till it's cooked!
  • Boil your water and cook your pasta like you usually do
  • Add some lemon, salt and garlic to the water
To Serve:
  • Scoop out the pasta onto your plate
  • Pour a little olive oil over the pasta so it's not stuck together
  • Put some cheese on it if you like
  • Stir in some peas or just leave them on the top
  • Then put your chicken on top!
It cooks up pretty fast and tastes really good! If your up for it I even have some additional sides that go really well.

Lemon Asparagus:
  • Pour some olive oil in the pan
  • Squeeze some lemon in
  • Shake some Mrs. Dash
  • Cut the hard butts off the asparagus and then throw them in and cook till they're soft 
Easy Quick Garlic Bread :
  • Turn your oven on to the Broil setting
  • Lay some bread on a cookie sheet (it doesn't matter what kind you can even use halved hot dog rolls or hamburger buns!)
  • Butter the side facing up and sprinkle garlic powder over it
  • Put it in the over for a few minutes till they're light brown 
  • Take them out carefully flip them over 
  • Butter the new side facing up and sprinkle some more garlic, if you like you can even put grated cheese on this side (don't do it to the first side or it will stick to your pan when you flip them over)
  • Put it back in the oven for a few min (watch out this side will brown up quicker!)
That my friends is a very easy, quick delicious meal that tastes like you put a lot of work into it and that's what I'm all about! 

Thursday, November 11, 2010

Thank You For Your Service

'In November 1919, President Wilson proclaimed November 11 as the first commemoration of Armistice Day with the following words: "To us in America, the reflections of Armistice Day will be filled with solemn pride in the heroism of those who died in the country’s service and with gratitude for the victory, both because of the thing from which it has freed us and because of the opportunity it has given America to show her sympathy with peace and justice in the councils of the nations…"'

I would like to thank all of our military veterans for their service and personal sacrifices so that we can have the country and lifestyles that we have today.
 I would especially like to thank my three favorite veterans :)
 My brother (who is going to kill me)
My father
My Grandfather 

I would also like to thank all of my other family members who are serving or have served I really appreciate all of you! I don't want to forget to thank the families of the veterans to, especially the mothers and wives, you keep our veterans strong while they are keeping us safe.

If you want some great history on veterans day please go here, it's also where I got my quote at the top. 

Wednesday, November 10, 2010

Hello My Name Is: Zombie Mom

So I had planned on updating about Amber's orthopedics appointment the day it happened (Tues.) and I really had no excuse since it was such a short and to the point visit. However I decided to take an epic nap and go to bed early instead.
I had also planned on doing a "girly" Wordless Wednesday for today but I decided to take another nap....and I will probably go to bed early again so hopefully I get this out year!
I did muster up enough energy to make a very delicious meal that I'll blog about tomorrow. I'm also going to apologize ahead if parts don't make sense!

So let me start off by saying Amber has been doing really well this month. She's getting a lot stronger and finally starting to build up some muscles. Her glasses seem to be motivating her to do more movement and stay in more challenging positions longer.

Our orthopedics appointment was at 8:30 and you're supposed to be there at least 45 min. early to get your x-rays done. This meant we had to leave our house at 5 am to beat heavy traffic, we get there really early but it's better than being really stinking late. We sign in at 8 and they tell us she doesn't need x-rays today, ugh we had checked two weeks before and they said she did. But I'm glad because this baby has had more than her share of x-rays. So we waited the half hour in the waiting room. Amber had breakfast, played with her little puppy, talked to daddy and watched Curious George.
They put us in a room, weighed her (13lbs with all her clothes on) took a temp but forgot to do length (poor new guy). The Dr. came in right away in a really good mood, an answer to prayer because they took forever last time and he was really grumpy! He looked her over commented on how her hips were doing great and he could really tell she was getting a lot stronger. He approved her for a stander, a walker and said she should do well with them but might need some orthopedic supports because she's so extra flexible. Then we were sent on our way! Unless there is some unforeseen problem we won't be seeing him for another 6+ months!

As for equipment for Amber it's going to be tough. She's only 23 inches long and hasn't grown in length since she was 5 months old. There is really great equipment out there but it's made for bigger kids so it's going to take a lot of looking, work and nagging to find the right stuff. Right now we're looking into modifying a regular baby walker. Once she's developed a little more and seems more motivated to really walk we'll move on to a walker/gait trainer type thing although I think with the support she needs these would be better. The other thing we're looking into is a prone stander. The prone stander would be really great for her because her breathing is really compromised when she's sitting, not quite ready to bear a lot of weight on her legs but still wants to up in a more upright position.

On the 19th we have an appointment with her pulmonary specialists and a follow up with cardiology. I'm really not looking forward to cardiology because we haven't made any decision about doing surgery or not.

Sorry about the lack of pictures I've haven't had a chance to get any new ones uploaded so here's an oldie but a goody! I miss that outfit : /

Monday, November 8, 2010

A Rainy Day

Last week was rainy and yucky, the weekend was nice but it looks like this week is going to be cold and rainy too.
 So what's the perfect thing to do on a rainy day, other than cuddling and movie watching? 
Pie Making!!

 I am a huge fan of apple pie. I won't even tell you how many I ate right before and after Amber was born!
My mom made the pie filling, Pillsbury made the crust and I cut the holes (my favorite part other than eating).
Amber's favorite part is sitting in her highchair and watching us.
She was rockin a pretty crazy hair do!
I left Amber on the couch for a quick second while I got some pie and I came back to this.
She likes to pull her tape off and apparently found a better place for it.
It was really cute until she started having a meltdown. I guess not being able to see out of that eye was scary!

Tomorrow we have a follow up appointment with Amber's orthopedic surgeon. She'll have a bunch of x-rays to see how things are going and hopefully we'll be able to convince him to look into some equipment for her (she's really sick of being on her back).

Now for some pie!

Thursday, November 4, 2010

Catch 22

Last Tuesday the 26th was the big meeting with some of Amber's specialists. The metabolic geneticists, his nurse practitioner, pulmonary specialist, orthopedic surgeon, cardiologist, palliative care team and the complex coordinated care team were all there.  
Friday we had a meeting to discus the meeting. It was us, the metabolic geneticist, his nurse practitioner and the palliative care team. We didn't discuss anything new and if anything it's only made our decision making harder.  
There's a lot to it so I'll keep you all focused by throwing some pictures in.
Here's a great one I forgot to put in yesterday! She's a low fat cow :)
First of all I'll start with the chest expansion surgery. She can not have it. Which is fine with us because we had already decided against it. It would be too much of a shock to her system and it would be too long/painful of a recovery. 

Second is the heart. This is a tough one. She definitely needs heart surgery. However it would be open heart surgery and they are very concerned that her lungs would not be able to handle the procedure. On top of it I-Cell babies have a lot of issues with intubation and while she did really well last time there is no guarantee that she'll do well again since she has shown some progression in the disease. The risk of death is very high but we know her quality of life will go down greatly without it and her life span will be even shorter. We're still very undecided about it, not great seeing how we need to do it sooner than later. 

I believe that's it for surgeries. 
This photo melts my heart, he's such a great daddy!!

This is a tough one. I think I've mentioned before that there is no cure for I-Cell and really no treatment either. The Dr's are still counseling us towards a stem cell transplant (either a donor cord blood or bone marrow), but there really isn't much information on it. They've seen the progression of the disease really slow down, especially with the heart. The down side is the areas that are already affected in her will not change, the progression may slow down but they will always be the way they are and will continue to be issues for her.  What this means for Amber is if she gets it she would probably grow a little more this would be great because it would put some space between her lungs and stomach and she would also fit equipment better. The major down side is the transplant wouldn't change whats already bad with her  lungs and heart and they would not be able to handle a bigger body. However if we don't do the heart surgery her body would not be able to handle the intensity of the transplant, even without it it might be too much for her. 

For other treatment; if we don't do the heart surgery it would be more medication as she gets worse. The palliative care teams seems very confidant in what they can do for her because they've worked with another family who has two I-cell kids. 
She's so curious about everything these days!

So, if you're a little lost by now don't worry! I'm not sure how helpful the meeting was. I don't know what I was expecting since I know by now that they'll never give us a straight answer on what we should do for her. We're kind of stuck in a loop now and here's how it goes;
Her heart needs fixing but her lungs can't handle it,
Her lungs need fixing but her heart can't handle it,
The transplant might work but everything needs fixing before for it to work best 
and that starts us back to the beginning!

They have offered to send us to a hospital in Minnesota and PA who have seen more I-Cell patients and have done treatment/surgeries with them to get a second opinion on what would work best with Amber. We aren't sure if we'll do it. It's also a hard decision because it's a lot of traveling during flu/cold season which is not really the greatest time of the year to travel but if we want someone else's opinion especially on  the heart surgery we have to do it pretty much now. 

I was really hoping that after this meeting we would be set in a direction that we want to go in terms of surgical interventions or not but I think we're actually more confused! 

In other new news her geneticist cleaned out her ears and discovered that it was an ear infection that was causing her sickness and not a reaction to the MMR vaccine! So she's on antibiotics and seems to recovering; her fever is gone but she's still acting off. The other crappy news is her liver is even bigger, it's doubled in size in a little under a month. We aren't sure if this is just the progression of I-Cell or if it's a build up of blood because her heart is working so hard....I'm not sure which would suck more. The only good news is she's not showing signs of any serious liver issues, her skin and eyes are still a good color. 

I think that's all...  This was supposed to get out for today (Tuesday) but I think it will be out for Thursday, I'm not very good at multitasking these days! 

Wednesday, November 3, 2010

Spectacular Spectacular!

They finally came in!! 
We ordered Amber's glasses back around the end of August, they came in last week but they weren't the right prescription and had to be remade but now they're here!!
Her face when she first had them on was priceless. She seemed amazed at what she could see and couldn't decide what she wanted to look at more. Of course she had to tell everyone about it!
 She is definitely more curious about everything with her glasses on.
Her favorite thing is to pull them up and down to see how we look both ways, it's too cute!
The only down part is the sides seem too long. When she's on her back or side they pop forward or go crooked. It really seems to frustrate her especially since they bug her ears when it happens. I think we'll see if they can adjust them, she does have a back strap but it doesn't go small enough.

Usually she sits on the edge of the counter to check herself out in the mirror but she's so excited now she kicks her legs out into the sink so she has to stand (with me holding her).
It's so neat to see her so excited about everything. And talking so much, the only time we hear this many squeals is when she's on the phone with her daddy!

It was definitely worth the wait for such great results! 
To be honest with you when she first put them on the lady helping us and I both started tearing up it was so precious.

Monday, November 1, 2010

Happy Halloween

Yesterday was Amber's first cognitive Halloween! 
Last year she was only a month old, she didn't really dress up and she slept through most of it. 
She wore a little duck onesie with matching socks that her daddy had bought before she was born.
It was so big she had to wear a ton of layers underneath it, now it barely fits her!
When we were in North Conway earlier this fall we picked her up a "fancy" costume!
 It was really hard to chose just one!

 It even had a tail!!
 She made the cutest little cow! 
(Trying to moo!)
This was her trick or treating buddy. They were too cute together, giving each other looks like "what are you wearing?". Maybe next year they'll actually be able to have some candy :)

Hope you all had a fun Halloween!