I Think I Missed Wednesday....

 So we started out the week doing really well and then I don't know what happened. I blame it on Amber having an ear infection. She had been acting fine but then it must of just hit her or, she just likes to complain when Daddy's home. Tuesday she was in a great mood and acted hilarious all day. Her favorite thing right now is doing crazy long raspberries and then screaming/laughing. She's obsessed right now with anything she can do with her spit, like raspberries, bubbles, spitting.....it's messy but better than her usual choking on spit.

So here is my (semi) Wordless Wednesday make up:

She likes to feed herself now

 Eating Avocado

 Getting ready for her shot

 Correction to last post~ she made this face when I told her she had a fever

  Tuesday...she refused to wear her pants all day!

 My little snuggle bunny

She doesn't like to nap with her glasses on. She held them the whole hour or more she napped.

Now to get back to the grindstone, we leave in a little more than 3 days!!

 I heard they're delivering oxygen today, the pressure is on! 

On a side note today is   

Go Red For Women 's 

Wear Red Day

Last Year I did really well remembering

 unfortunately things have been crazy lately

Amber's wearing red today (please excuse the messy hair!)

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.

Insert Witty Title Post Here

I think I should get the worst blogger award! I don't know whats up with me but I just haven't had the motivation to blog in the longest time! I have half put together posts about our trips and interesting things but I just can't get myself to sit down and finish them. 

I will admit I've been a bit distracted trying to quilt Amber a little snuggle blankie for Christmas. To tell you the truth it's not working out to well. Quilting requires basic math skills....skills that I lack so it's a bit frustrating. Making your own pattern is also something I don't recommend if you've never done it before either. I have a bad habit of biting off more than I can chew on every project I take on.  

What else is going on? Well Amber's glasses are still not in. Our giant meeting is still on for the 26th of this month but I still don't have a time of day.

 Thursday morning we'll be having a meeting with the palliative care team that I would rather eat nails than go to. After the meeting we get to register with the hospital and temporarily move into the cardiology floor. Friday (at some point) Amber will be put under and have her heart catheterization and both MRIs. We've been told that it will take at least 6 hours and we might go home on Saturday/Sunday. I can not even express to you how much I'm not looking forward to this. When it comes to surgeries I feel more at peace because I know it's something she really needs and she'll benefit from. This just makes me feel uneasy. I know they need more data to err on the side of safety but I also know the answer isn't going to change. Even if  the tests show her heart isn't as bad as they thought it was right now/the next few months is the best time frame to do surgery. We know she did well in June and they're guessing not much has changed in 4 months but in 6 months to a year things might not go as well. I really just wish it was next Monday...maybe. 

I have been motivated to work out the last two days. I'm not expecting to see any results since my diet consists of large portions of comfort food and desserts/candy :)

Amber has been getting in on the action too. This was her first taste of a Kit Kat.

 She seemed a little wary at first. 

Either that or she was telling us to give her a break!

(sorry I'm a sucker for puns)

 Making sure she didn't gage herself 

 She LOVED it!

She's so smart too she sucks the chocolate off one end and then flips it over and sucks the chocolate off the other end! I think she gets her chocolate eating skills from her mama's side of the family!

Here is the other reason why I should get the horrible blogger award! I've been so caught up in my moodiness about this week and my failed project that I completely forgot to tell you some of the biggest news ever! 

1) The other day Amber moved her head side to side while on her tummy!

2) While on her tummy I lifted her under her chest and she put her arms out in front of her and supported her  

     head (for less than a minute)

3) Today in the car and the other morning she said "MUMMY"!! It's more like Bubby kind of like how she   

    said Ayee before Daddy

4) Sunday morning she rolled over! She was laying on a towel on the table so she had a lip to roll off of. She 

    did not like it at all by the way!

I think that's it, I can't believe I almost forgot to tell you! Now that it's almost Wednesday I think I'll go to bed and forget about proof reading this. And you all have permission to send me hate mail if I forget Wordless Wednesday again :) 

Taste Of Summer

Amber's first taste of watermelon!

(please excuse our messy hair it's just one of those days)

She didn't seem to sure at first but, as soon as she got a taste of it she loved it!

We tried out her new mesh bag feeder.

It's a little too heavy for her but she can actually feed herself with just a little help.

Unfortunately I'm still having video issues so I don't have any happy pictures of her eating.

We're still adjusting to life on oxygen. We're working out the kinks with the company. There seems to be some lack of communication when it comes to orders so we've been waiting all week for new tanks. It looks like we'll have just enough for our trip tomorrow but I'm worried her big tank will run out tonight and we'll have to use the travel ones. They never told us but they deliver to our area on Monday, thankfully they're making an exception and coming out tomorrow.

Tomorrow (Friday) is our big trip to Boston. We'll meet with the new Endocrinologist. I'm actually excited to meet her. From what I've read about her she specializes and is really interested in the type of things that Amber has; skeletal dysplasia, rickets and other bone disorders. We'll also be meeting with a new Pulmonary Specialist. Hopefully they (not sure if its a he or a she) will be able to set us up with a sleep and swallow study and give us more insight into how long she will have to be on oxygen.

It's a stretch but I'm really hoping we'll be able to stop in and talk to the diaphragmatic hernia surgeon. We've been e-mailing back and forth and he wants to talk on the phone tomorrow (sounds like the recipe to a cute high school romance huh) but in all seriousness I'm worried because he still has not received the x-rays we sent out last week. Ugh hopefully he'll get them tomorrow.

Amber is looking forward to seeing her PA grandparents this weekend!! It's been far too long and it will be very nice to see them again! Amber would also like to say "Happy Birthday" to all her cousins who just turned one and will be turning one soon!

Dinner With Amber

Since I can't seem to get my videos up and working on here, I'm inviting you all to a photo journey of Amber's dinner time.

Tonight's Menu: Oatmeal and Applesauce (1st time!)

Patiently waiting for dinner. She gets very excited! Although tonight she seems a bit more interested in the camera phone than what she's about to eat.

Her first time trying applesauce! She's not too sure about it. I was hoping for a better reaction but it has the same consistency as pears so I guess I'm not too surprised.

Tonight she was more interested in Daddy than eating.

So Daddy took a turn feeding her!

She was all smiles for him!

This is her new squinty smile, its very silly!

But even Daddy couldn't get her interested in eating tonight.

She decided her bib was far more interesting.

All done!! (time to eat fingers now)

It was a lot of work but she did end up eating everything.

We have two more days of applesauce. It will be interesting to see if she warms up to it or throws it up like pears. Then its on to BANANAS! We've been dying to try it!

The good news is we've been getting a lot more sleep lately! The bad news is it's because we all have a horrible cold :( (that could be why dinner didn't go over very well)

Tomorrow we have an early morning endocrinology appointment. This is the appointment we had to cancel back in......some month I can't remember right now but it was when our water pump died. My brain is a complete fog so I'm not quite sure what this appointment is for but I think its blood levels we had taken ages ago.

Playing Catch Up

Sorry about the lack of posting going on lately! I think all the lack of sleep is catching up with me. I've been a zombie lately! Monday night was good she only got up once but every other night has been pretty bad. There has been stuff going on...well more like piling up, I've been having issues motivating myself. I've done some cleaning, judged for a homeschooling event and worked on getting favors ready for our women ministry event.

I woke up the other morning to Amber eating her blankets. I think she's finally really teething she's been chewing on everything....and I mean everything!

The fruits have been going pretty good. She loves peaches and prunes! She's not too sure about pears, I think its a texture thing. The fruits are really tart. She makes the cutes sour face when she first starts to eat them. I have a video of it but I still can't make videos work on here.

The solids are catching up with her though and she's been horribly constipated for a week now. We've been trying everything, it seems to finally be working. I think we'll hold off on trying apples and bananas because they're on the list that constipates :( On top of it the poor thing has awful diaper rash, so we're switching back to pampers.

The hubs worked his magic and now we get Netflix through our Wii.

It's a wonderful but dangerous thing.

I must admit I've been having a Fraggle Rock marathon this week.

I think a certain little someone must be getting hair styling tips from them :)

She's a bit crazy just like her mommy :)

We're going to load up on our coffee now!

I've got two dozen cookies to bake for the event tomorrow and a bunch of other things I need to catch up on! You can expect a new baking recipe to show up and maybe some nice meals the hubby has been trying out!

A Milestone

This always happens. I have days when I think Amber will never be like other babies; never roll over, sit up or walk. She always picks these days to amaze us. For a while now she's been getting her legs in the right position to roll onto her tummy. She tries really really hard but she can't figure out how to get her top half over.

So I gave her some help. And to my complete surprise she liked it! Usually she screams but she actually wants to be on her tummy now. She only stays there for about 5 mins or so. She still can't turn or lift her head but she tries. She can get up on her toes and she will lift up her hips and belly!

She is a cutie!

There is a new baby store near us that has the coolest toys! She loves her new snail (thanks grammy!) She hardly has to touch it to make it roll, light up or sing!

And She loves looking at that cute baby in the mirror.

The mirror is all gooey because she was rubbing her binky on it.

I can't believe she's almost 7 months! She is suddenly growing up so fast. She tried peas and they gave her horrible gas. Not just stinky like green beans but the hard tummy, upset baby gas. So they are a no go! She loves sweet potatoes :) We're trying a new brand of oatmeal that does not contain wheat so hopefully constipation is a thing of the past! We try peaches tomorrow!!

Our other big news is Amber is sleeping in her own room!! I know I can't believe it either....well you're all probably thinking finally hee hee! It's weird but the first night went well she only woke up to eat twice and put herself to sleep (without me) a bunch of times. I'm looking forward to getting some good sleep!

It's ironic almost everyday I can't wait for her to be able to do more and grow up but when I start to think about it (or put outgrown clothes away) I just want her to stay a snugly little baby forever. I think its the worst and best part about being a parent.

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.

Yellow Ribbon Smiles

Saturday Amber had green beans for the first time and LOVED it!

It's going so much better than the squash did.

My mom invited Amber and I to join her at a Yellow Ribbon Event up in Manchester Vermont. Its an even for families of deployed solders. A time where they can all get together share what they've been going through and get some education on things they need. The people that put it on really took good care of the families. They had massages, fun stuff for the kids and if you had to travel over 50 miles they put you up at the hotel. It was held at the Equinox Hotel, it's quite the swanky place!

Let me give you a little tour of our room :)

I loved the color scheme! And the free baby :)

The full length classic photo was so cool. They were all over the hotel

This was my favorite part. I love when the sink station is outside of the bathroom.

The bathroom was tiny but cute! The ceiling was the old printed tin but in the shower it was really low. I was worried I'd hit my head and I'm only 5' 2"! The cool part was a little square nook in the shower for the soaps. Sorry the pictures so fuzzy some day I'll go back to using a real camera and not my phone :)

We had a really good time and Amber was really well behaved she had lots of smiles for anyone in uniform!! Waiting to see my hubby I haven't seen him since Saturday and I wont see him till the wee hours of Monday morning! It's the longest we've been apart! Although after sitting in on the spouses meeting I feel bad :( They are very strong women, I could not be apart from my hubby for that long!!

Tomorrow I'll be getting up early to pack for our trip to PA!!!

Congrats Dad on meeting some very important people!!!!!!

I told Amber, she has a case of the giggles tonight but I think she was impressed!

Squash Not

After Tuesday nights great squash success I was super excited to try it again. Unfortunately we had anything but success. On the first bite of squash she made an awful face. After three she threw up hardcore. I laid her down on the changing table she was smiling and I thought everything was fine. As I was buttoning her up I looked at her face again, she was trying to throw up but couldn't so she was making a horrible silent gaggy/choking face. She finally made some noise,breathed, inhaled some puke and shot some out her nose. Ugh it was horrible and scary.

I'm not sure what caused her to have such a bad reaction. It seems like she doesn't like reheated food, she did a little better the next morning with fresh squash. We know her pulse oxygen levels go down when she eats and she has a hard time breathing when she's in a seated position so maybe that had something to do with it. So far she's doing better overall not choking on the rice and we're praying it stays that way.

We tried pigtails again yesterday! They came out a lot better than our first attempt

(we did not take pictures of the first ones they looked so bad!)

She wasn't too sure at first

But she warmed up to them!

She even pulled her binky out to give me that smile! I love the pigtails but they make her look so old! Her sleeping is somewhat better she went to bed around 8ish and then was up at 12, 3:30 and started her day at 6:30. Its not great but its a lot better than it has been!

I'm going to be really busy the next couple of days. Saturday night to sometime on Sunday I'll be going to Vermont, Monday to Wednesday I'll be in PA and then Thursday we have appointments! Depending on how things go I probably won't post again until next Thursday or Friday.

Squash!

I just love that word! Yes I am a little off my rocker these days thanks to my lack of sleep but I do have a reason for the squash.

Last night Amber had squash for the first time and...she LOVED it! More than rice or oatmeal! It was so stinking cute although she was covered in it.

I think part of her sleeping problem is she has impetigo again around her mouth. It's really bad this time so on top of her antibiotic she has an anti-fungal. She's apparently having an allergic reaction to it so she is a rather grumpy gertie lately :(

She loves to hang out on daddy's lap :)

This was after her dinner. The good news is her dinner filled her up and she went to bed on time at 7. She did wake up a little after 10pm and then was up from 2am to 5am. Ugh, not fun. We did sleep in till 8 but then it was a mad rush to get ready before the early intervention lady came at 9:30.

She is also a little book worm!

She loves to be read to (as long as it rhymes) and loves to look at the pictures. This is her favorite book called "Hippos Go Berserk!", from her grampy before he deployed.

More from my update yesterday; She will be seeing the Children's geneticist again in May and the 1st of April we have another joint appointment with our orthopedist and #1 geneticist. Our interventionist wants us to talk to them about getting her a trunk support brace thing, this may or may not be an option with her chest sensitivity/shape. Our interventionist is also talking with her equipment person about a bigger car bed or some type of car seat that would work better for Amber!

This is Random but..

Yesterday the hubs and I took a trip to our local feed and grain store to pick up some bird seed for my mom. Its one of my favorite places to go. They have some really interesting things there. Every type of bird feeder and some really weird bird feeding gadgets. Some very interesting paraphernalia if you have an over grown rodent pet, like mesh vests to walk them in....I was thinking about getting one for Mr Pickles but I don't think they have XL cat sizes :( What really caught my eye was a big yellow sign at the checkout register. The first part was something about it being that time of year or spring time. The last part was what caught my attention, in big bold letters it said "Reserve Your Chick Now!" In case you didn't know I used to have a pet chicken.

"her" name was Lucy. She turned out to be a he....a very big, loud he and sadly had to be adopted by a very loving vet. I really love chickens as silly as it seems. However, my squatter status, four cats, a baby and a husband that thinks they're dirty keeps me from having anymore. It's really quite sad but seeing how I can't get help making a cat enclosure I don't see how I'd find help making a chicken coop. Ah but I can't help reminiscing about my senior developmental biology class and they're cute fluffiness!

In case you can't tell I really need some sleep!

I'm off to take a much coveted nap now that miss stinkypants has decided to take one too!

Happy Spring To You All!

Don't Forget To Reserve Your Chicks!

Did She Just Do That?

This has been quite an eventful week and I'll admit I'm exhausted!

The most exciting news is that Amber is now starting to wave, clap and laugh! She does it in her own way so its easy to miss but she's really doing them!! Of course like any other baby she won't always do it when you want her too so I have yet to capture it on video to share with you all!!

Bear with me here I have a ton of information and events to tell you about. I should start doing updates more than just once a week when I have crazy weeks like this!

Monday ~ My mom left to go visit my dad. We headed to an appointment for me. Amber decided to show off and waved at my Dr! What a nice relaxing day :)

Tuesday ~ We headed to Amber's genetic appointment. It went really well! We had some very nice discussions with the geneticist and found out some interesting things. The results of her general metabolic and general genetic test came back. They are both normal! Its good but it makes things more complicated for her Dr's. The geneticist is now toying with the idea that it might be Juene Syndrome It seems like it would be a good explanation of Amber's chest shape, slight breathing problems and issues gaining weight. However its not a perfect fit. She has very long fingers, contracted fingers, osteopenia and pretty normal length arms and legs. Anyways our geneticist is sending us to her friend as Mass General for a second opinion.

Wednesday ~ The early intervention lady and developmental nurse came to visit Amber. It was a great session!! Amber was in the mood for showing off; talking, waving, clapping, imitating the works! By the way at her age she shouldn't really be imitating so they were very impressed! When they visit they do a mini neuro exam and she scored above average! For a fun experiment they want us to teach her some simple signs. As of right now she just thinks its really funny but won't do them. Her daddy did teach her the fist bump (in one day!) so maybe the signing will be his job.

Thursday ~ We had our first pulmonary appointment. This wasn't supposed to be until later in the month. We were really happy that they were able to see us sooner. Recently she has been choking a lot during and not during feeding, she also has episodes at night where she does her in pain cry randomly the developmental nurse and us think its possibly reflux, her soft pallet causing an obstruction or apnea. The pulmonologist right now wants to figure out why her chest is that shape. He said one reason could be Juene syndrome or something like that or because of her soft bone issue the diaphragm muscle could be pulling her chest walls in. It sounds bad but her pulse/oxygen levels at rest are ok and her pulse/oxygen levels during feeding go down lower than they should but its not low enough to cause any intervention or major concern at this point. He did order another full body x-ray and upright chest x-ray. I guess vitamin d makes the bones look different so they could have missed something last time and it will give them a better idea if her chest shape has actually become worse. Our geneticist check in on us while we were waiting and it sounds like she might go ahead and order a sleep and swallow study. The pulmonologist seems great but I'm not thrilled about his wait and see attitude. So after that loong afternoon at the dr's we came home to a dead water pump :( ugh so we packed up and slept at my grandparents for the night.

Friday ~ We were supposed to go to the endocrinologist but had to cancel to deal with the pump. Unfortunately we won't see him again until June, we're praying they can give us a cancellation like our pulmonary appointment. I made amber's mass gen. appointment! It wasn't supposed to be until July 2nd (!) but (thanks to her being famous and loved by all the geneticists in our region) we were moved up to March 19th!!!!!! Oh and my mom found a happy apple in with some old toys!!

Well that's our crazy week! I think this sums up how we all feel

yup she feel asleep while I was feeding her

(we finally got her a real highchair! it seems to work really well)

I think this runs in the family

He's such a cutie :)

Have a good weekend its supposed to be nice and warm here yaay!!!