Starting Spring Right!

We're doing things right and starting off this spring in good health. Yes, Amber is finally 100% back to her normal self! 

Yesterday's Genetics follow up went really well. Amber was in good spirits and other than her gum over growth nothing else has changed! Yay!! She had her usual blood work done to check the levels of her iron, potassium, white blood cells, electrolytes and some other things. Her last couple of results have been pretty out of whack and we think that might have been some of the reason why she had been so sick. Thankfully the results of yesterday came back showing almost everything has started to come back to normal levels! Amber weighed less this visit (but she's been sick) and she's grown half an inch! Which we're really excited about because she should be able to get her walker now!

The other awesome thing about yesterday was being able to meet with another I-Cell mom!!

She has twin boys with I-Cell and we met through a Facebook support group. She doesn't live in our area but was doing some work up here and we couldn't pass up the chance to meet her! It was so nice to be able to chat with another mom who's going through the same things as us. Someday I'd love to have Amber and boys meet, I think they would have so much fun together! She has a blog too HERE, the boys are sooo cute!!

We had a GORGEOUS day here today!! Nice warm weather, in the 60's. Amber was able to enjoy some fresh air. She loves to be outside and thought it was really funny that her cat Boo could come out too! 

Amber also got to touch snow for the first time today! I know, it's weird to think about, it was warm but we still have snow in most places. We're looking forward to more warm weather these next days!!

Amber wanted to wish you all a Happy St. Patrick's Day! 

(this was supposed to be posted sooner)

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!

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! 

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! 

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!!

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!!

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!

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. 

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. 

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! 

Memorial Day

In recent times Memorial Day has turned into a holiday to kick off the start of summer, full of barbecues and sales.

I would like to remind you all that it is actually a very somber holiday to remember and pay tribute to our service men and women who have paid the ultimate sacrifice for our country.

It should not matter what your political views are or your feelings on what our country is or has done. Please remember that these fallen men and women are someones; son, daughter, sister, brother, parent and friend. They gave up everything so that we can have everything that we do.

I would like to encourage you all to say thank you to those these men and women have left behind or place a flag on a fallen soldiers grave.

This is a great site if you would like to learn more about this holiday.

I would also like to share with you a quote from Christian Military Wives that says a lot about this day;

"This special weekend set aside for National observation is a time for us to publicly, prayerfully and thoughtfully remember those who have lost their lives defending this great Nation. Please spend time in prayer for our Gold Star Families. We have an opportunity to remember and honor the fallen by reaching out and loving those they left behind."

Thank You

Easter

Happy Easter!

Yes, I know I'm really late but we've had some gorgeous weather so I haven't been on and we've been having Internet issues on top of it all! I'm not going to lie for some reason it just didn't feel like Easter this year. We hard boiled eggs but never got around to coloring them and we didn't really do baskets. We did do a family dinner. It was really nice except my cousin's daughter threw up in the middle of it (literally!). I know its not all about the traditions! I missed Palm Sunday :( We had a wonderful cantata for the Good Friday service. A great Easter Sunday sermon and communion fell on Easter Sunday so that was really cool. I feel horrible but my heart just wasn't in the Easter spirit this year.

We got a much needed family picture taken :)

Amber looked adorable!

There is a funny story behind our dresses. Mine is the dress for all occasions. I got my dress in Easter 08, the Easter Luke and I got engaged, wore it last summer when I was hugely (ok hugely for me!) expecting little beans and wore it again this Easter!

(thank you Target for you're wonderful quality)

Amber's dress is about 26 years old! My grandmother bought it for my Aunt when she was expecting baby number 3. They thought it was going to be a girl but it was boy!

It's a beautiful dress!

We opted not to do baskets for each other this year but we did do one for Amber. We kept it simple. She loves the little chicken it's light weight so she can hold onto the wing and well.... wing it around.

Instead of traditional baskets I made basket cupcakes this year! They came out pretty well. I don't really have it down to a science yet so I'm going to hold off on posting instructions for now.

I think it was very fitting that Amber got to try carrots at Easter time! She loves them to the point where she eats them off of her bib, its too cute! Thankfully she hasn't turned orange yet! She'll be trying sweet potatoes and pees next and then its on to fruit!

Hope you all had a great Easter!

Isn't it wonderful to know He Is RISEN! and we have no fear in death!! I think its a wonderful way to start spring. As we wonder at the new birth/growth He has given us to enjoy on this earth we can also celebrate the new life He has freely given us through Salvation! Amen!

I had a lot of time to think about such things as I was trying to clean out our poor ignored garden. I am so grateful He does not give up on us when we become entangled in earthly things and overrun with the weeds of sin! There are a lot of great parallels between our Christian lives and gardens but I think I'll save the rest for another day.

Happy St. Patrick's Day!

Happy St. Patrick's Day!!

It's a picture perfect St. Patrick's Day the sun is shinning, the snow is melting the grass is.....brown :) well at least the sun is shinning! I have not prepared anything special for today, no green cookies, food or even corned beef and cabbage :( it's very sad. I did put on a green shirt and give Amber a green bow, we're the only two Irish ones in the house so we have to show some support for the day! I will share with you three Irish blessing/poems from my tiny "Irish Blessings" book above.

The first is in honor of St. Patrick's Day:

May the leprechauns

be near you,

To spread luck

along your way.

And may all the

Irish angels

Smile on you

St. Patrick’s Day.

The second one is to make you laugh:

Health and a long life to you.

Land without rent to you.

A child every year to you.

And if you can’t go to heaven,

May you at least die in Ireland.

And the third is one I love:

When Irish eyes are smiling,

Sure it’s like a morning spring.

In the lilt of Irish laughter

You can hear the angles sing.

When Irish hearts are happy,

All the world seems bright and gay.

And when Irish eyes are smiling,

They’ll steal your heart away!

~ Traditional Irish Folk Song

Here are my favorite smiling Irish eyes! (I really hope this video works I've been having issues getting videos lately)

Yesterday we enjoyed a lovely 5 mile walk! Amber really loves being out in the fresh air so I think we're going to head out on another walk! Hope you're all enjoying some sunshine!!

Valentine's Day Means

Hand Made Valentines

(yes I know its old but I'm a busy mom!!)

Here are the Valentines I made this year. They are all made from stuff I had lying around bits of old cards, stickers ribbon and some really old stamps. I think its a good way to clean out old/odds and ends in your crafting things.

I'm having some issues with blogger and photos so the inside of the card is before the outside.

I hope you all had a lovely valentine's day!!

Happy New Year?

It's been kind of a bitter sweet start to the year for us. Christmas was wonderful it was so nice to spend time with my family and have my dad and brother home. Here's Amber in her Christmas jammies giving her Christmas doll a hug! I'm not sure if she meant to do this or not. She did it a few times before she started eating the dolls arm :)

Good News: Amber is showing a lot of progress. She is using and opening her hands more, I even saw her open her thumb up to grab at a toy!! Her head control is way better. She is well on her way to supporting it herself! Her neurology appointment went really well. The Dr said that she had no reason to believe any of Amber's delays were brain related and she thinks the seizure like episodes she was having were due to bad acid reflux (sounds really weird but apparently that can affect the brain stem) She had her blood level re-tested (she's been off her meds for a month now) and the levels are normal! She'll have them tested again in February and we'll have more x-rays then too.

The Not So Great News: At her last appointment she was only 7 pounds :/ its not a great weight gain and I really thought she would be closer to 8 by now. Her 3 month well baby appointment is next week so hopefully she's gained more weight. My hope is that once she starts on solids she'll gain more and gain steadily.

She is becoming such a smiley girl and so talkative too! Here she is checking out her hands.

We spent a lot of last year preparing for this day but its not really something you can prepare for. Second time around and its still just as hard. We'll spend all of this year waiting for him to come home. At the same time we'll be missing my brother who deploys any day now. We did get to spend a lot of time with them before they left and had a lot of fun together.
It does seem like everyone is leaving. My grandparents, aunt and mom are all in Florida. Its very weird and quite here :/ at least I've still got my hubby here!! Well I'm not completely abandoned we still have family and friends helping out but there's nothing like a mother.

On A Lighter Note!! Are you wondering what happened to that to the gingerbread house?

It's hard to see but here's its fate:
It's being eaten! The fluffy culprit is Jada. She's not the only one Mr. Pickles has been helping eat it too. All the coconut snow is gone! Who would have thought cats would eat something like this!

Hope you all had a wonderful Christmas and a blessed New Year!