Tuesday, December 28, 2010

Christmas Montage

Here are some of our Christmas pictures!
 Christmas Eve having fun with one of her cousins. They were too cute together!
 Playing with her bead frame from Uncle Ian, her new favorite toy.
 Trying out her jumperoo!
 She loves little things
 Trying to figure out a puzzle
 Not too sure about the little doggy
 Chilling in her Christmas jammies
Sleeping on Daddy

Unfortunately we took mostly video and some still shots on the video camera which I haven't been able to figure out but once I do I'll put some up.

Two and almost a few days till we leave for PA!

Sunday, December 26, 2010

Merry Christmas!

Things have finally, kind of, settled down since my last post. Since I haven't had a post in a week I'll catch you all up in bulletins form:

  • Monday went shopping at a giant mall with my best friend and her sister
  • Tuesday decorated the tree with my little family, Amber loves ornaments 
  • Wednesday had a lazy morning and then went running around like crazy looking for the last gift
  • Thursday saw my orthopedic Dr. will be another 12 weeks for the nerves to heal, have a dislocated collar bone will be a year before my arms back to normal. Helped my gram wrap presents. Came home and fell on the ice!
  • Wrapped all my presents.  Amber talked all through the Christmas Eve service and then had lots of fun with her cousins at Great Gramma's house! Stayed up late putting a jumperoo together.
Christmas morning we got up early to clean the house for my mom and set up my dad's gift. Amber was so good all day! She unwrapped her presents but was excited to see what was inside, she's such a smarty! She got some really cute outfits and great toys. She loves her new jumperoo but I think she needs one of her heavier cousins to come loosen it up for her. She also loves her new swing, we found one that keeps her at a better angle so her breathing is better. My brother gave the hubby and I a video camera so we have to whole day on video! It will be so great to go back and watch it and to be able to share it with family who couldn't be with us. I'll try and get some shorts on here too! 

Unfortunately I'm on the wrong computer so I don't have any new videos or pictures to show you but, here is Amber's Christmas bells video and I hope it's super adorableness will make up for it!
I can't promise that I'll have many posts this week. We're gearing up for another trip to PA! We're also praying that we get there this time and nothing health or weather wise gets in the way. What I mean to be saying is this is going be another busy week but you can expect some make up posts in the new year!

I hope you all had a wonderful Christmas! 

Sunday, December 19, 2010

Busy Busy Busy!!

We've been so busy this week and things aren't going to slow down until sometime after the new year!
We've been madly cleaning and rearranging to accommodated family coming home and holiday decorations.

Friday was a very busy day. Amber had an appointment in Boston. We headed in early to meet with a few people and do blood work before hand. It was a good thing we were so early because Amber threw up at some point on the ride in and it took me quite some time to get it all cleaned up!
Amber's full DNA sequencing finally came in! Which will be an entire post by itself but we were able to meet with the nurse practitioner to get the write up of it and talk about it a little bit. Now that we have all of Amber's information the hubby and I were able to have our blood taken that day to see if we are both carriers or not.
Children's at Christmas is absolutely beautiful! They have a giant tree, huge wooden train set in the lobby and everywhere is decorated beautifully. They also have a lot of gift donations this time of year. It was so cool to see carts overloaded with presents headed up stairs to the inpatients. Due to Amber's condition she was on the list to receive a gift.  Whoever had her name was more than generous and we are very thankful!
Her appointment that day was with a resident and senior neuromuscular neurologist. I was extremely pleased they were very thorough in the appointment and very helpful after words. Since we know what Amber has we already have an idea of what to expect from her in terms of what she is going to be able to do physically. Which is why I was so happy with them, they easily could have had no interest in us know that we already knew everything. They are going to work on getting Amber into aqua therapy, since regular stretching can be so painful for I-cell babies. They also want her to get communication therapy and a full hearing test. I'm also happy to say that they are very excited to join her team of Dr.s!

Friday night we took Amber to the Nutcracker that was being put on by the group I used to dance with. Amber loved it, she was also enthralled with one of the camera men! At intermission we took her back stage and I don't know who was more excited to see each other, her or the dancers. The weirdest part was seeing girls that I taught as 3 year olds all grown up. Watching it really made me miss dancing and I still hope that one day Amber will be able to.

Saturday Luke was back at the eye Dr. His eye is healing up nicely and he's on new drops now. Amber also had her first salon haircut! She was so well behaved and now looks so adorable! I promise I'll get pictures up once things settle down. We were able to visit with my grandparents again. I'm happy to say they were in very high spirits and it sounds like my grandma should be home early this week!

Today (Sunday) we enjoyed a lovely Christmas Cantata. Amber's love of music never ceases to amaze me.  We finally got our Christmas tree today!! Amber loves it she was so excited to see it go up this afternoon.

And now I'm off to do some baking and start decorating this tree! 
This is from last week at the nursing home Amber loved these dolls. And yes this is where we had our family Christmas card picture taken, talk about some serious multitasking! 

Thursday, December 16, 2010

Family Time

Can you believe that this was a year ago?
 I can, just by looking at the picture but,
it feels like it's been a lot longer!
We're finally all together! 
If I had been thinking I would have put Amber in the same snowsuit she wore at the deployment ceremony. 

Amber was beyond excited to see her Grampa she never took her eyes off of him when we were in the airport and made "lovey eyes" at him all through lunch! 

It was a great day, Amber was able to visit with her great grandparents too! They are still recovering but doing better everyday! Unfortunately we've got another family member who need healing prayers. The husband right eye has been hurting all week to the point where he was unable to drive today. He saw the eye Dr. today who took three bits of rusted metal out of his eye! I won't tell you the details because it's super gross but (even though it still hurts right now) he should be all better in a few days. Although he seems to be having an allergic reaction to his antibiotics.  

Amber has a neurology appointment tomorrow. It's a new neurologist and I'm not really expecting anything new. 
Then it's fun all weekend long!! By the way WELCOME new readers we love to have you :)

Christmas Card

Peppermint Dots Christmas Card
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View the entire collection of cards.

Tuesday, December 14, 2010

I'm Addicted To....

Yes it's true I LOVE them! I mean really what isn't there to love about them? They have the coolest products for any occasion you could think of and great savings to boot! Oh, and they ship your order in the cutest orange packaging! 
I used them for most of my Christmas shopping this year, printed out a bunch of my wedding pictures and saved over $120! How awesome is that?

Now I know earlier I was being a Debbie Downer about Christmas and I was actually contemplating not sending out a Christmas card this year when I found this post on my friends blog. A chance to win 50 free Christmas cards just by promoting their 2010 Holiday Collection, count me in! I know I'm a really horrible blogger friend to you all because the deadline to register was the 10th but I found out about it at the very last minute. 

If you don't know about Sutterfly I highly suggest you check them out HERE! Right now they have great saving for Christmas. 

They have over 800 Christmas Cards to chose from, any kind of design you could dream of from whimsical to classic with any number of photos to add too. I've spent hours looking through them and they're all so great I'm having a hard time choosing which one I like the best! 
I do know these are my two favorite pictures I'm going to use on my card.

And I'd have to say these are my top three choices for us (in no particular order)
 I've got a thing for snowflakes this year
 This one is simple and pretty
This one is fun and I love the colors!

If you've already got your Christmas Cards out you can still check them out for their other great products. They have great photo mugs that you can even order with chocolate in them! A great idea if you need to send it right to the recipient or just to be able to finish the gift with one click. If mugs aren't your thing they have 30 other beautiful photo gifts to chose from. A few of my favorites are the pewter ornaments, CenterStage books and keepsake boxes. I'm really not kidding when I say you can get pretty much anything personalized with a photo for any occasion! 
What else do you need if you're sending out beautiful Christmas cards? Beautiful address labels! Something I need to look into since all of mine say Mr. Schuyler Last Name on them!

The last thing I was to tell you about Shutterfly is how great the quality of their stuff is. I have been more than satisfied with all of the products and pictures I've ordered from them. It really is of professional quality!

Merry shopping to you all!!

Monday, December 13, 2010

Ring Those Christmas Bells!

I am so happy to say that Amber made it to the church yesterday and was able to be in the Sunday School Christmas Program! It was a really rough morning for her but she pulled through and didn't have any issues until we were ready to leave church!
She was so cute! We sat her in her Bumbo seat in front of the other children and it worked perfectly! The teachers sang "Gospel Bells"  while the kids rang their bells. They were supposed to be singing too but it was hard enough to get them to ring the bells!
Amber was one of the first to be handed her bells and she started ringing them madly! When I stepped away from her and she saw all the people she got stage fright and stopped ringing them. Even when she saw me she wouldn't shake them again, just gave me a "deer in the headlight" look! Finally when she saw one of the leaders (who happens to be one of her great aunts) she started ringing them again, only after she stopped being enamored with her singing and ringing bells too.
I was so proud of her! She did so well, didn't have any issues and then sat quietly on my lap and watch the rest of the show! She really is a very good baby!

She was actually happy the rest of day too! Since she's been sick seeing her happy and herself is a rare thing. We took advantage of it and tried to get some cute Christmas photos!
This was another miracle of the day, that she actually sat in the rocker! Of course the non skid stuff under her butt and the fact that the rods in the back of the chair cradled her head helped a lot too. None the less she was so happy to sit in it and find out that she could rock it! I would just like to know where my little baby went! She is looking and acting so grown up these days.

Finally something that I know you wanted to see!
Ringing her bells! 
I'm really hoping that I can get a copy of the program from someone who tapped it! A lot of Amber's family were unable to see her (including her daddy) and I know that they would love to see it!

Hope you all had a merry weekend! I've got quite a lot to do this week, someone very special is coming home very very soon!!

Friday, December 10, 2010

What Time Is It?

I'm sorry to be a Debbie Downer but it really just doesn't feel like Christmas here. My mom put a few more decorations up this morning but they just seem out of place. I'm not even sure why, maybe it's because we've been sick or the lack of family all around but things are just off this year.
Do you remember last year? All the baking posts I had for you, my holiday favorite list, how crafty I was. I don't even have a million Dr appointments like last year for an excuse not be doing these things. Well, being sick is a good excuse to not bake but I could be wrapping presents, decorating or doing some holiday craft. I take it back, I am trying one craft but it's proving to need to much motivation to actually get it finished.
Part of my problem is the lack of snow. I mean come on this is New England! It seems like everyone else has had some snow and all we've had is a few really lame flurries. Freezing temperatures without snow is not fare people.
We also don't have a tree. Last year we had a tree the day after Thanksgiving, the year of the horrible ice storm that almost canceled Christmas we had a tiny tree in our little apartment well before Christmas. I'm not even sure where a tree will go with all of Amber stuff.
I guess my other problem is I feel like I should be really excited for Christmas this year. It will be Amber's first Christmas where she actually knows whats going on around her. Last year she slept through pretty much the whole day.
She's also supposed to be in the Sunday School Christmas thing this Sunday, she would be ringing bells with the other babies/toddlers. She loves ringing her bells and it would be great for her to be able to do something "normal" for once. The problem is she won't be doing it if she's still sick. I really want her to be able to because in the back of my mind there is always the awful thought of will she be with us next Christmas? I hate thinking that way but honestly Amber's diagnosis has made all the holidays and even daily events so bittersweet.
Sorry to be such a downer! This is a video of Amber when we brought all the decorations down around Thanksgiving. She was really excited to see them, she's not wearing glasses because she didn't want to. 

In other news of whats going on around here:
  • My dad is finally state side!! Shouldn't be long now till we see him again!
  • The hubby and I are feeling better
  • My Grandpa is doing much better, in a nursing home for now getting rehab.
  • My Grandma is doing all right, still recovering but should be joining Grandpa soon.
  • Amber is still pretty sick. We took her to the Dr's yesterday. They said right now it's just a cold and there isn't anything they can do for her (other than what we've been doing). They also said they wouldn't be surprised if she got worse next week and if it turned into pneumonia, walking pneumonia or an ear infection. An ear infection isn't fun but it's something that we can deal with that doesn't worry us too much. Any thing else worries us, especially since even with this just being a cold she's in pretty rough shape. Thankfully right now her oxygen sats are good, her heart rate is a little high but manageable, she's still eating fairly well and having good output if you know what I mean. Please be praying that her fever stays low/manageable, that her congestion (which is the major problem) clears or lessens and that her cough goes away. 
Wishing you all a great weekend! I've got the computer back that has most of my pictures on it so maybe I'll muster up a good wordless post!

Tuesday, December 7, 2010


The bad news Amber and I both have really nasty icky colds. I think it's been almost a year since I've been this sick. The worst is being sick at the same time as Amber.
The up side is my shoulder is feeling better....or at least I can't feel it over the all over body aches! Thankfully Amber hasn't been too too grumpy (like when she had the ear infection) and thankfully my wonderful cousin came over yesterday to entertain her!
The best thing is our suction machine came in right before Amber got sick, talk about perfect timing! I really don't know how we got along without it before. I'll admit it's is really freaky to do, I feel like I'm going to suck her brains out, but at least it cuts out the throwing up!
I was thinking our worst days of this cold was over but today seems to be the worst for both of us. The only thing to look forward to each day is daddy coming home from work to take care of us. He cuddled with Amber last night and then gave her a really great bath! Unfortunately she epically wet the bed and then threw up, so much for a good smelling baby. She did give us a really good nights rest which I'm very thankful for.
In other unhappy news both of my grandparents are in  the hospital right now. Last Thursday my grandfather had a really bad fall, he seems to be recovering alright though. Yesterday my grandmother had heart surgery, she's still a little out of it today but also seems to be recovering alright.

You know what they say; laughter is the best medicine.
This is from around Halloween time, I love her little laugh!

I good news my dad should be home soon!

Friday, December 3, 2010

Do you know how hard it is to pick a video! It's much harder than trying to pick picture!
Today I think we'll go for the super chatty Amber one because (in my opinion) it's a pretty good depiction of how life around this house is right now. Full of baby chatter.

Other than a nurse visiting ever 28 days and her weekly Early Intervention visits Amber really doesn't have much going on. She has two visits this month, with a neurologist and her pediatrician but then she has off till March. I can hardly believe it myself!
With a lack of weekly appointments to cause schedule interruptions she's had a lot of free time to think about what she's doing with her life. And she's decided that she's going to spend every waking second telling us how she feels. She's also decided to work off some of her flab and build up some muscle. I have to say when this baby puts her mind to something she really can achieve quite a bit!
For muscle strength she is doing really well with supported sitting. She's well on her way to sitting on her own and I think she'd be closer if she wasn't so scared to fall over. Her muscle control is really come a long way, she can bend herself forward on purpose and pull herself back upright. I've already told you about the walker and jumperoo which is just amazing! We are so proud of everything that she is doing and trying to do, of course we're always proud of her no matter what she is or isn't doing!
She is also quite the conversationalist. It's much easier to show you in these videos than it is to try and figure out how to type baby speak. Because we're talking about it and because I love you all so much I'll try and see if blogger will let me add another video. Just so you can really see how talkative she it!
Isn't she a great mommy! 
I love how she's making the baby bang on it's head, that's something that she does to herself all the time. 
I hope you all enjoy the videos, I'm really sorry for my horrible grammar (can I still use the pain killer excuse?) and I hope you all have a wonderful weekend! 

Thursday, December 2, 2010

Amber loves to play her little piano! She is getting to be so strong.

Not much is new around here. Amber is becoming a very busy little girl and loves to be sitting up or in her walker for most of the day. Yesterday she tried out her cousin's jumper toy and loved it! I wasn't expecting her to be able to jump but she did right away and went wild in it. I think we know what Santa is going to bring her this Christmas!
As for my neck of the woods; I'm still in a lot of pain. The Dr said it's definitely some muscle strain with a pinched nerve and a possible rotocuff (something like that) tare along with it. So today I get to see an orthopedist and possibly get an MRI.....wooohoo. 

This just means you get to enjoy more videos of Amber!!

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 before....next 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!