Yeah, that WOULD happen!

The very day that I set the goal to try to make a post every day, even just a short one of something special from the day, my computer dies! Well, it didn’t actually die but if I use it, it will, so I don’t. That was like 3 days ago. You would think that because my hubby is a computer guy I would have a working computer within a reasonable amount of time…you would think. He’s been busy helping others with their computer needs and I guess I’m at the bottom of his list. Boooo!

A few pics from the past couple of days…

I don’t know how she manages to make such a mess every time she eats yogurt but she does. It’s time for a bang trim, ya think?

Just look at this hair!

Since I was a little girl I have ALWAYS loved braiding hair. Maya is my ideal girl because she will sit still as long as I need her too. Arabella, on the other hand, HATES it when I even touch her hair. Tough! I decided that I am going to braid her hair every single day until she gets used to it. When you have hair like my girls it’s just part of the price you have to pay.

He thinks he’s so cool.

Do you think he’ll still think he’s cool when he’s 16 and realizes he was wearing mom’s old sunglasses? I think not.

I soooo look forward to getting my computer up and working. Blogging just isn’t the same.

Dear Aidan,

Do you know how much I love you? There just aren’t words to describe how much you mean to me. Even though this stage of rebellion that you are in is not my favorite, you are still my favorite little boy. Even though you choose my friend America over me every time, I still choose you. Even though you don’t want anything to do with me when Daddy is around, I still want everything to do with you.

You are a big boy but to me you will always be my baby. I love you.

Love,

Mom

I’ve Got A Dream!

We watched part of the movie “Tangled” tonight. Apparently one of the songs is stuck in Aidan’s head. This is Aidan just a few minutes ago. There is actually nothing to watch but just listen. He’s supposed to be sleeping but instead he is singing:D

Aidan & Maya share a room and I love it because I get to hear giggles and singing and unfortunately sometimes even fighting and crying. Tonight Aidan cracked Rich and I up with his rendition of “I’ve Got A Dream”. This coming from a boy that had vocal cord paralysis!

The A says ahhhh!

So, apparently “school” is paying off! The other morning I let Aidan and Maya color with markers for the very 1st time during our “school” time. Aidan was so proud and excited when he drew his very first letter “A”!!! I’m so proud of him! You can see a couple of other attempts that resulted in an “H”. He’s so cute. My baby boy is growing up too fast:(

Alligators & stuff

No commentary, just pictures.

 

Some days I feel like this:

But most days, I feel like this:

Poor “little” guy.

What happens when you play with woodchips?

You get a HUGE splinter in your hand! One of Maya’s favorite things to do when we go to the park is play in the woodchips. The day before we left for Disney World Rich took the kids to the park and came home with Maya screaming. After I saw her little hand I completely understood why she was crying so hard. The splinter had gone all the way in her hand. There was no way to pull it out. We called a friend that is in PA school and he had a go at it. It was too deep to get out without cutting into her hand so we decided we would give it some time to maybe come out on it’s own.

The next day we went to Disney World for a couple of days and kept a close eye on her hand. On our drive home we decided that it looked like it might be getting infected so when we got home at 8:30pm, Rich took her to the ER. They took x-rays and then gave her a shot of ketamine to sedate her. Rich said it was pretty freaky because it took about 15 seconds after they gave her the shot for her to basically become comatose. 15 seconds!! Even the nurse was a little nervous because he had never seen such a quick reaction to the ketamine. Don’t think we will ever be using that again.

So, the doctor came in and cut into her little hand and still couldn’t get the splinter out. He cut a bit deeper and was finally able to remove the giant piece of wood. I didn’t see it but Rich was surprised at how big it actually was. We had no idea it was that big. If we had known we obviously would have taken her in right away. When they finally got home close to midnight, Maya was so loopy. Here are some pics of my girl:

I didn’t get to bed until 1am that night:( I had to get up at 6am to go to the hospital with Arabella. So happy last week is over.

Arabella’s pH Probe

 

What a BUSY spring break we have had! It has been so eventful that it hasn’t really been a break. Saturday we rode and air boat, Monday & Tuesday we went to Disney World, Tuesday night Rich and Maya went to the ER (post and pics of all of these events coming soon). Then, early Wednesday morning Arabella & I went to Jackson Memorial hospital in Miami for her pH probe. You can see pictures and read about one of Aidan’s pH probe experiences HERE.

I’m not gonna give all of the details in this post because it was actually a pretty bad experience. I’ll save all of the negativity for a later post, hehe;) I’m gonna focus on the good because in the end there really is sooooo much to be grateful for. Here’s the skinny on the probe & reflux & removal of the trach. The reason for the probe was to check if she has reflux. This is EXTREMELY  important to know before she gets the trach removed. For a normal kid reflux isn’t THAT big of a deal if they take their medicine. For Arabella it is a huge deal because if she does have reflux and it isn’t controlled it is really dangerous to take the trach out. She could end up having to get the trach put back in if it’s not under control. So, Dr. Singer said that he will “absolutely not remove the trach until the GI doctor swears to him that the reflux is controlled.” Once the GI doctor gives the go ahead he can do a bronchoscopy to check for movement of her vocal cords and then, when she is ready, the trach is outta here!!!

Left pic is right after they put the probe in. It took them 4 tries. It was so sad:( Right pic was after her bottle. Much happier:)

She was such a good sport. She tried to pull at it a couple of times but after I told her “No! Don’t touch!” she would just point to her nose and say “No!”. Such a cutie.

I packed a few toys for her to play with but after I got there and was told that the play/activity room was closed for the day I was really wishing I had brought more. She entertained herself with Mr. Potato Head for a good 2 hours in about 30 min. increments.

 

We were required to stay 24 hours so we spent the night. That night and the next morning we roamed the halls just trying to kill some time. A hospital is a very humbling place to be. You go in feeling sorry for yourself and you leave feeling soooo blessed and grateful. We saw so many little kids on chemotherapy, dialysis and who knows what else some of these kids were going through. Whatever it was, it was worse than our situation. It was one of those times when I wished I had a magic wand that I could wave and take away all of the sickness and suffering that these little kids are too young to have to experience.

In the morning we went into the play room to color and play. There was a little boy that came in named Sky. I remembered seeing him in his room the night before playing with his Toy Story toys. He couldn’t have been more than 4 or 5. He was so cute and friendly and so sweet to Arabella. He came in wearing a mask and gloves, dragging along his IV pole. He was very yellow and after he sat down across from me and took off his gloves I noticed he had several fingers amputated. I’m so sad to say that it looked like some of his others would soon follow. He couldn’t speak but he could sign and he was very animated. One of the nurses made the comment to me, “Sky practically lives here.” How sad is that? I wanted to bring him home with me. He lasted about 10 minutes before he was worn out and had to go back to his room.

There were so many others that just broke my heart. The little boy in the wagon that couldn’t walk yet because he was so weak from his dialysis. The little girl that came in to the play room crying because she was in so much pain and barely made it with the help of her mom and several nurses. They finger painted and played with cars and colored. Normal kids going through some of life’s biggest struggles. I hope that we will never take what we have for granted. When life gets hard, don’t get down. Be grateful for what you do have. What an experience and what a lesson to me. I am grateful for it.

The pH probe results came back NEGATIVE! Arabella no longer has reflux and we can focus on getting the trach out!!! A very happy ending to our visit to the hospital.

4min. 37sec. in the life of Aidan

Note to self: Don’t sing along with your kids. You sound so annoying.

Almost walking!!!!!

Heck yeah!!! I am soooo excited that Arabella is this[] close to walking! I know that most people don’t like it when their kids start walking but I LOVE it for so many reasons. Not gonna lie, it makes me just a tad sad because that means she is growing up…time for another baby? HAHAHAHA! Here are the links to the videos of Aidan & Maya’s 1st steps. AIDAN & MAYA

So, we’ve been practicing like crazy.

Today she made some serious progress. Now,excuse the mass destruction in the back ground and the naked child sitting on the table (naked is acceptable but sitting on the table is not;)

Take two:)

Go Arabella! Can’t believe how fast she is growing up! I wish I could slow her down sometimes but I am enjoying every second of her babyhood.

“It’s just stuff”

Two days ago my in-law’s house burned down. Shock. We were in complete and utter shock. Rich’s parents are AMAZING people. I love them so much. To me they are not Rich & Marianne…they are mom & dad and I sincerely love them as if they were my very own parents. While I am incredibly sad to hear that they lost their home and everything in it,  I am grateful that they are both ok. Here is an e-mail that mom sent out about the fire.

We can hardly believe the tragedy that happened yesterday
morning. It was such a shock to come home to a ravaging fire burning
our beautiful and loved home. The roof was engulfed in flames and it
happened so fast. Since we belong to the rural fire dept. it took a
while for the fireman to all get here. They were quick to  contain the
fire but most of the house was destroyed. It was agonizing to watch.
We have been able to sift through ashes to retrieve what we could.
Fortunately the "hot spot" was on the side of the house away from the
master bedroom, and packrat that I am, I had boxes of photos in my
closet. Friends took boxes of wet photos...hundreds of them home to
dry for me. Many can be saved...I love my photos, my memories. Also
when the first person on the scene arrived, even before we got home
(we were gone 1 hour for breakfast at a local restaurant) he thought
we were in the house since our car and truck were in the garage. We
gone with our friends and neighbors, the Robinsons. So this first
responder kicked open the door and found us gone, then gathered up as
many pictures off the walls that he could and ran out...then towed our
car out. We then arrived and had keys to drive our truck out. That was
barely enough time to save the vehicles as shortly after the roof
collapsed. After my temporary hysteria subsided...yes, I freaked out,
then I went numb as I realized there was nothing to do. Rich was
running around getting vehicles out and helping with what needed done.

(What used to be the entryway)

(Side view)

(Back of the house)

     It wasn't long before word got out (a friend put it on
facebook), and caring neighbors, family and friends arrived, giving
hugs and empathy and bringing food and drinks for the firemen. The Red
Cross came with a "comfort kit" and a debit card to buy necessities.
Then later my teacher friends showed up with toiletries, PJ's, socks
and other clothes and generous gift cards!, We felt loved and cared
about. Pizza arrived for dinner last night thanks to another caring
friend. My daughters went to Springfield last night and brought us
both back some needed clothes and items you never think you would
miss...Today a mass of friends and family showed up. It was like grand
central station. People went home after church and came back in their
work clothes and boots, bringing boxes and plastic tubs. They dug
through the rubble and burned cupboards and found dishes and pans,
china and picture albums. As people left they took boxes of stuff home
to wash and clean up as much as was possible. Another friend brought a
Kentucky fried chicken lunch for everyone. We were in shock at the
kind people we know! We shall never forget this day.. We want to thank
ALL of you who have called, left messages, sent prayers and emails,
given cards (and $) clothes and candy, sent over food, and just plain
showed you cared. WE LOVE YOU ALL!! We have and will shed a lot of
tears over this ordeal, but you have comforted us.

(Dad’s dvd collection)

(Mom’s piano)

(Dining room)

     Tomorrow is a new day..the insurance adjuster comes at 10 for 6-8
hours and then comes for another whole day Tuesday. Thank goodness for
insurance...we hope it comes through for us. Tuesday I will return to
school. It is a big week  for me. My class is performing a BIG play
Wed-Fri. for a lot of students and families. Life goes on...and I know
ours will. Again, straight from our hearts we say thanks for caring.
love, marianne, mom  grandma... ps..we are staying at our neighbors
and good  friends,  the Robinsons, till they kick us out or until we
figure out what to do..  Special thanks to my kids...who have rallied
around us...Ryan even came from Kansas City and Richard in Florida is
going to try to save what is on our hard drive which Ryan took out of
our burned computer.(we are mailing it to him tomorrow!) Thanks also
to Rich's sister, Kathy, and bro in law John, who have put in 2 long
days of work..

Can you not just tell how incredible and strong she is from this e-mail? I admire both of them.

A few details:

*Dad’s beloved Kindle burned in the fire:( He was very sad about that but he is really grateful that when the 1st person to arrive on the scene was pulling out photos and things that he thought are important, he grabbed dad’s ipod. I guess everybody knows dad can’t live without his music!

*Mom has had such a great attitude and sense of humor. She is happy that the deer head that dad had mounted in the living room is gone:)

*Casualties of the fire include 2 birds and several goldfish.

I have the most awesome in-law’s in the whole world. Last night Rich was talking to his mom and he asked her, “So mom, after knowing people that have lost their homes to fires and hearing their feelings and experiences what do you feel now that it has happened to you?” She responded, “It’s just stuff.” They still have what matters most which is each other and their family, the rest is “just stuff”. She is inspiring to me. I hope that I can be like her when faced with adversity.

Fun & Frustration

My husband is turning into a work-aholic and I don’t think I like it. Ok, so it’s not actually his fault but we have been getting very little “daddy time” these days. This semester is proving to be a BUSY one and we are still adjusting. I am finally coming to terms with the fact that I’m just going to have to be a single mother this semester and that’s just the way it is! I might be exaggerating a bit but not much.

It’s been a rough adjustment for me. I got this awesome new camera but have had very few opportunities to practice taking pictures:( If and when I go out with the kids there is just no time to whip out the camera and get some shots without another kid running off or getting hurt. The crafting bug has been non existent for a couple of months now and I have missed it! It’s coming back now I just have to find the energy and the time. Good news…I’m running again! I finally feel like my ankle has healed and I’m ready to get moving. I ran 3 times last week, 2 miles each time and today I ran 2.5 miles with no problem! I’m super excited to get back in the grove.

I’ve set new goals and I’m really enjoying them. One of my goals is to have “school” with Aidan & Maya every day while Arabella is napping. We’ve done it for 3 days and they LOVE it! Every day we have a letter of the day where we watch starfall & sesame street video’s about the letter and then a coloring activity. I’m also trying to teach them the letter in sign language. So much fun!!!

Today they had a bath and then went to school in their undies:D

Arabella is just too much! She woke up early from her nap today so I took advantage of the opportunity to snap a few shot of her while Aidan & Maya were sleeping. Look at this little face. I don’t think it’s possible to get much cuter than this!

Like I said, the crafting bug has bitten me and I’m getting the urge to make a few little things here and there. I saw a tutorial for this super cute headband and whipped a couple up for my girls and a friend.

Do you love it? I LOVE IT! It is so cute and comfy and doesn’t slide off! Then I took a bazillion pics of Arabella just because she is GORGEOUS! This is my favorite one.

 

Good times. Lots of work and lots of fun…never a dull moment.