Someone Turned 2!!

Little Miss Amber Skye turned 2 this September!!

 I'm having serious issues coming to terms with the fact that I have a 2 year old. I don't feel old enough to have a 2 year old and I sure don't feel like she should be that old already! Where did my snugly baby go? Let me tell you she may still look like a baby but by no means did the terrible two skip over us. They do not discriminate against the globally delayed or medically fragile, aren't they nice! Don't get me wrong 2 isn't totally bad. We are really enjoying Amber's personality develop and her sense of humor. Her want to find a way to communicate is also finally coming along which is a very important thing to help avoid tantrums. I'm trying to not complain about tantrums because they are no where near as loud/violent as your average 2 year old.

Birthdays with I-cell are not always the funnest of times. We were very excited to celebrate Amber's 2nd birthday because 2 is a fun age and birthdays are fun. We were also excited to just be celebrating because so many people didn't expect her to make it to this birthday (us included at some points in the past year). I wanted Amber's birthday to be something big, special and memorable. Unfortunately when it comes to I-cell and birthdays or any special event there is always that horrible, horrible thought of "this could be her last one". 

On top of the uncomfortable conglomeration of emotions her birthday brings there are also the unfortunately realization of not being able to celebrate her birthday in a "normal" way. Most birthdays involve cake. Well Amber does not do well with baby food and can not swallow/eat pieces of anything food type or not. The worry of her aspirating and getting pneumonia or worse, kind of takes the fun out of birthday cake. Then there is the question of the party. Amber loves people and other kids and would really enjoy a huge party. Unfortunately Amber's birthday is at the beginning of the cold/flu season meaning most people are sick or around too much sickness to be around Amber. We would love to make her happy with a big party but again the risk of her catching something really takes the fun out of it. I had such a hard time with all of this this year that I almost didn't do anything for her birthday and then that lovely thought of it possibly being her last popped into my head and made me feel even worse.

So we found some middle ground! We decided to go places for Amber's birthday. We planned a Zoo and a Farm Zoo trip. Both outside with little to no risk of her catching anything and thankfully the weather cooperated (not too hot not too cold) so she was able to be comfortable being outside! It was the perfect solution she loved seeing the animals and people and best of all she did not get sick!!! We also had two little family parties for her with our MA and PA families. We did do cake; well cake at one party, cupcakes at another. Amber stuck her hands in the frosting but didn't eat any of it so she didn't have any issues. It also helps that Amber is so stinking adorable, loves to be the center of attention and loves opening presents! I think she could make any situation fun!

I would like to also thank everyone who stuck with me through my hiatus. I believe I'm ready to return now and please excuse any awkwardness in my posting I think I've almost lost my knack for writing coherently! 

Return Of The Zombie Mom

I really did mean to blog again before the NSTAR walk!!

 Unfortunately for you this means I have a lot to catch you up on. 

 We had a wonderful stay in PA. All of the pictures in this post are from our stay in PA but these are not all our pictures!  We were able to see a lot of family and have a lot of fun! Amber and I were supposed to stay for two weeks and unfortunately had to cut our trip a few days short because Amber got sick again. 

 We brought Amber to her pediatrician almost as soon as we came home and were told that she had pneumonia in both lungs. This was really scary because we're constantly told that an un-treatable pneumonia is most likely the way she will go. Thankfully since we caught it so quickly the antibiotics were able to do their job pretty much right away.

 Amber was back to her almost her normal self quickly but her lungs have taken a very long time to clear out. She finally sounded "alright" last week and is totally back to herself this week.

 We've finally started home nursing!! We've had a nurse during the day the last two days and I've loved it! I've been able to bake Luke's birthday cake stress free, get laundry done, do some much needed re-organizing to Amber's binders and blog! 

 Once "training" is done we'll have a nurse for 2 nights and 2 days. I know I've really been fighting bringing them it but it will be nice to have a little bit of a break, be able to sleep and get some much needed things done around the house. It will especially nice to have them the next time Amber is sick.

 I think that's all other than a few nightmares with our oxygen company and a few of Amber's prescriptions. I do have to say I'm not quite a Zombie Mom at the moment. This last round of Amber being sick was really rough though I had totally lost my mind hence why I wasn't blogging and I was putting the phone in the fridge. Thankfully Amber has been sleeping well for almost a week now (of course since we're going to be bringing someone in) and I can slightly turn my brain off when the nurse is here. 

 I do have a bunch of posts "in the pipeline" and I promise the next one will be about the NSTAR let's just say it went amazingly well!! Amber is appointment free until July!! We're praying that she can stay healthy she's been off the antibiotic for a week now. Last time she only had a week off before she got sick again, she's got to stay healthy so she can be a flower girl for July 2!!

I do have to say... YAY BRUINS!!!!!( Sorry to our canadian I-Cell families.)

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. 

9*15*08

 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!

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! 

Wordless Wednesday "A Day At Davis Farmland"

A Grand Day Out!

I'm finally catching up on some fun posts of things that happened while my dad was visiting!

I just love those bright eyes!

After one of our appointments a few weeks ago we headed over to the Boston Public Gardens. 

It was a beautiful day! 

Amber had so much fun looking at all the trees and people.

  We showed her the "Make Way For Ducklings" statues. 

She wasn't totally thrilled at first.`

But then she warmed up to them!

Our little family (minus two) and the duck family!

Then we walked over to the pond for a Swan Boat ride!

 Grampy telling Amber all about the swan boats.

I think she misses him.

 She had so much fun!

I don't really like this picture but if you look in the background it's a nice shot of what the boats look like.

It was such a great day! 

It was the perfect day for Amber's first visit to the gardens and first ride on a Swan Boat! Swan Boat rides with my dad is one of my favorite childhood memories so it was especially special to have my dad with us. I'm looking forward to doing this again this spring!



If you're not acquainted with Boston here is some information on "Make Way For Ducklings" and here is the official website and some great history on the Swan Boat rides.

Welcome Home

The house once again feels like Grand Central Station with people coming and going! My brother recently returned from a 7 month training deployment and gave us a whirlwind of a visit. He flew in late Friday night and left early Saturday morning. We were able to visit a little bit but it definitely wasn't enough time! Hopefully we'll see him again soon.

Today my Dad flew in for a 15 day leave!

 

It's so great to see him again, it's also been 7 months! Amber was so happy to see him again. She gave him big smiles and coos! This visit won't be all fun and games Amber does have a few appointments that we'll still have to bring her to but hopefully we'll be able to make a fun day of it! 

I'm predicting fun posts to come!!