Unexpected Everything

So basically everything lately hasn't been going quite like we expected. More so than usual!

First of all Amber was supposed to have her heart, brain MRI's and her heart catheterization last Friday. Well that didn't happen! We got there bright and early Thursday morning (ugh 8am) for our meeting with the palliative care team. That didn't really happen we ended up being really late so we started our day super stressed out. We were able to register early and get her x-rays and paperwork out of the way. Unfortunately whoever was being discharged on the cardiac pre-op floor took forever so we waited a good 9 hours till we were able to go upstairs to her room. I'm not even at the worst yet! The Dr's and whoever was in charge of Amber didn't look over her charts/previous medical history before they brought us in. This super sucked because they finally realized, after looking through her history and talking to specialists that they could not do any of her tests because she would need to be intubated for all of them and would also need an ICU room to recover in and none of the ICU's had any open beds. So they sent us home! We spent 12 hours there for nothing it was so frustrating. It was also good in a way because we were really stressed out and worried about her being intubated. As far as rescheduling the tests go we aren't sure, it's going to talk more talking about amongst her specialist and a few new people.

This Tuesday was supposed to be the big meeting between all of Amber's specialists. Well it still went on only we were no longer able to go. I guess since none of them had meet together before they wanted one meeting together to talk about things without us....without explaining everything to us. It was very disappointing to hear because I have a lot of questions I would like to ask certain specialist while other specialists are there to back me up! Tomorrow morning we'll go see her metabolic geneticist and the palliative care team to hear what they discussed at the meeting and start making some decisions.

If you were wondering about her elusive glasses, they came in on Tuesday but they weren't the right prescription. This means they have to be sent out and remade.....so probably another two months.

The worst unexpected thing this week was Amber being really sick. It started Monday with a fever in the 100's and her throwing up a lot. On Tuesday she looked like death, we had to turn her oxygen up and her fever got all the way up to 102.6 it was awful. We ended up taking her to the Dr's and they told us it was a reaction to her MMR vaccine. I was really confused since she had the shot two weeks ago but that's apparently how that vaccine rolls. She still had a fever yesterday but thankfully today she didn't have a fever but still looked a little under the weather.

Poor thing : ( 

Things have definitely been off, which always makes thing extra stressful but we're looking forward to relaxing this weekend and hope next week is better! I'm predicting super cute pictures to come after Sunday ; )

Wordless Wednesday "Epic Cuteness"

(throwback ^)

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 :) 

Back To Blogging!

Yikes, it's been longer than I thought since I've been on here!

 Our little family has been traveling all over the place. We headed up to North Conway NH the Thursday after my last post and stayed a couple of days, it was so nice to get away just the three of us! Then we had a lazy week at home before we headed out for a long weekend visiting our PA family. Well the long weekend turned into a whole week for Amber and I, it was so great to say the least! In a perfect world I would have been blogging daily about all our fun! Instead I selfishly chose to savor each day and have tons of fun and not tell you all about it ;) Don't worry I'll sit down and give them all the full post they deserve, mostly because I know Blogger won't be cool with all those cute photos in one post!

Here's a snippet of our trips!

It hasn't been all fun and games though, we've had two appointments this week. I know I usually go in order of the days of the weeks but one needs more explanation than the other so I'm going to be a little crazy and go out of order.
Tuesday she had a follow up with her eye dr. It should have been to see how her new glasses are working but  thanks to our lovely insurance it's going to be another week till they come in. I'm not complaining too badly since I'm pretty sure they're mostly covering them and they haven't given us any crap in a very long time! There isn't much else to say Amber was in a very grumpy mood and cried the entire time. What he did tell was he thinks the cornea clouding is actually better! Yeah it makes no sense, he said it should be either the same or worse but not better. We're trying to not get our hopes up too much since it could have been because she was crying, but still YAAY!! Other other yay news from them is we don't have to go back till January!! Well only to pick up her glasses but I'm not counting it.

Wednesday we had a cardiology appointment with her new cardiologist in Boston. We love him! He actually gives us all the information and gives us his opinion! He's also seen other patients with ML although I think based on what he's said it's type 3. His news wasn't really great though. Amber's heart is working harder and deteriorating faster than they expected even with the mitral leak and the left side being very dilated. He told us that if we don't do anything surgically, even using medication, in the next year her quality of life will greatly diminish and at best she might have another 2 years. Right now she is at borderline emergency level for needing her heart repaired. Next Thursday she will have a heart catheterization and the MRI on her heart (and brain) to get more information on how soon we need to do the surgery. We are really hesitant about these procedures because she will have to be sedated/intubated for them. Her Dr's are concerned but not too worried because she did so well with intubation in June, it will also give them an idea as to whether or not she'll be able to handle intubation along with a surgery. We are praying as always for the best but still can not help being uneasy about it.

In good news the wonderful nurse practitioner from our metabolic geneticist set up the mother of all meeting with pretty much all of Amber's specialist! I could pee from excitement! It's something I've dreamed about but never thought was possible like unicorns! Can you tell how excited I am! To be honest it's very exciting but also bitter sweet since we won't be talking about very wonderful things like; what's the most important things we need to do to keep her quality of life good, what is actually going to happen with her, what they can and can't do with her and their roles in her life now. The guest list is; metabolic geneticist, his lady, pulmonary superman, the dread orthopedist, the new cardiologist, the never before met new neurologist, the P.A.C.T team (palliative care people), possibly our early intervention ladies and whoever I'm forgetting (other than us of course!).

 Here this is a good face to represent her grumpiness all week!

Since I know some of you are not cool with me missing "Wordless Wednesday" I squeezed them into the post. Can you guess what the title might have been?

Well that's all for now folks!