The Fair

 

 

 

She makes us proud!

 

Every day this little angel makes us so proud. She never ceases to surprise us or her therapists. More than once she’s been called “peanut” because she is so tiny but she has a whole lot of spirit and determination to make up for her itty-bittiness. A couple of weeks ago Arabella’s therapist told me that she tought she wouldn’t walk until she was 18 months old. Last week the therapist was blown away at the progress she made in just 1 week. I think she is going to be even more surprised tomorrow when I tell her that Arabella took 5 STEPS a couple days ago! You go baby girl!

Is it normal for a 14 month old to almost master the shape sorter?

This is our shape sorter. She loves to sit there and work at it until she gets them all in. No it’s not normal! My child is a genius! Am I bragging? Yes, yes I am:D

She makes me laugh. Earlier today we went to the pool and Rich got in with the Aidan & Maya. Arabella and I had to sit on the sidelines:( I let her stick her feet in and that just was not enough for her. She was watching Aidan & Maya splashing, playing, having a ball and just about jumped out of my hands! She was getting so mad at me for not letting her jump in the pool so I stripped her down to her birthday suit and let her get in waist deep…still not enough! Sorry baby girl, no way I’m giving in more than that. We are so anxious to get the trach out so that we don’t have to deprive her of all that she wants to experience. When that day comes she is gonna do it all!

Amazing People

Today we took a little drive down to Miami. This trip wasn’t for pleasure though, it was all business for Arabella. We went to the GI doctor to work out her reflux issue and take the next step to getting the trach out. We learned today that the step that we will be taking is a pH probe. Aidan had this done TWICE! Interesting story if you want to read about it you can, here and here. The plan is to do a pH probe to check if she still has reflux. Normally you have to stay over night at the hospital but I think I’ll beg for them to let me bring her home since I’ve done it before. We’ll see if they let me.

We met a really amazing woman and her 5 year old daughter while at the GI doctor. Rich was the one who was actually talking to her while I was in the room with the doctor. She had a really sad story. Her daughter was in one of those wheelchairs that has head support and her hands were contorted and she was drooling. It was quite sad but what was even more sad was that 4 months ago she was a perfectly healthy and happy 5 year old.

Her mother, Amal, was very open in sharing her story with Rich. He said she seemed desperate and frustrated. 4 months ago her daughter lost a tooth. No big deal right? She was getting ready to start school and her mom took her in to the dentist to have her teeth cleaned. A few days later she noticed that there was pus where her tooth once was. She took her into the pediatrician and he prescribed an antibiotic. She took the antibiotic and after 3 days the pus had spread and was now on the insides of her cheeks. Concerned, her mother took her back to the pediatrician and he gave her “Magic Mouthwash” which was supposed to get rid of any infection she might have in her mouth. The very next day after using the Magic Mouthwash the little girl couldn’t even walk!! Her mom said she was scooting around on her bottom and from that moment on she began to deteriorate quickly. She told her mom she couldn’t breathe and was rushed to the hospital where doctors were stumped. Nothing was done for her. She has gotten so bad that she can no longer walk, talk or eat, has seizures and constant tremors. She is on extremely powerful & toxic medications and is losing more and more control of her body every day. All of this in just 4 months.

Amal is an amazing woman. She is becoming a strong advocate for her daughter and is determined to make her daughters life better. She completely touched my heart and I will always be praying for this little girl. We will be keeping in touch with them and want to help in any way that we can. Rich has done some research and even came across some possible causes. We are hoping and praying for a positive outcome for them both.

The people that we’ve met in doctors offices and hospitals have really impacted me and helped me to be more grateful for the health of my kids. I will never forget Ellie. You can read about her here. Funny follow up story about little Miss. Ellie. I met her the day that Aidan got his trach out and actually saw her name on the surgery sign in sheet on the day that Arabella got her trach put in. Ellie got her trach out on the day that Arabella got hers in! Dr. Singer is also Ellie’s doctor and told me that she is doing really well:D

I have a ton of pictures to post from the past couple of weeks but that will have to be another night:D

For the first time…

(Our amazing ENT & Arabella. He was also Aidan’s doctor. Pretty cool!)

For the first time, I allowed myself to image my life & Arabella without a trach. Let’s just say it was a tear fest! Arabella had her appointment with Dr. Singer today. Obviously, it was GREAT news! His exact words were, “It’s time.” Don’t get too excited! What he meant by that is it’s time to take the 1st big step. He wants to do a bronchoscopy. I shall define that for ya!

A bronchoscopy is a procedure during which your doctor passes a thin, flexible tube called a bronchoscope through your nose (or sometimes your mouth), down your throat, and into your airways. The tube has a light and a camera at the tip of it so that he can see what’s going on in there. She will be put under anesthesia. The purpose is to see if her vocal cords are moving. Aidan had 2 done before the results were positive.

Now, there is a catch. Arabella has reflux and until the reflux is 100% under control he WILL NOT remove the trach. We have to take her to a Gastroenterologist (GI doctor) to sort out her reflux and medication problem and when we have the ok from the GI doctor, we will schedule her bronchoscopy! Lucky for us we know a great GI doctor since she just recently performed surgery on Aidan’s tummy!

Now it’s time for some mushy feelings because I don’t ever want to forget all that I have to be grateful for. I haven’t allowed myself to think about Arabella getting the trach out because I didn’t want to be disappointed so I just never allowed myself to go there, until today. With Aidan I went into every single appointment with high hopes and great expectations. I always left crying because the results were never what I expected. I didn’t let myself expect anything with Arabella. You can imagine my utter shock and surprise when Dr. Singer said he wants to do a bronchoscopy. I was shaking like crazy and choking back tears. I even felt a little light headed! I am soooooo grateful for how blessed we have been.

Valentine’s Day

Oh, how I wish I could say I had the most romantic day ever! What can I say? There are times in our life when we just have to switch it into survival mode and when those times come holiday’s are void. To be honest, I’ve never been a sucker for Valentine’s Day. The way I look at it, my man is so good to me year round, I really don’t expect anything extra on Valentine’s day. Of course, he always does something for me anyways.

We’ve been in survival mode for the past couple of weeks because Rich had a HUGE test today. Survival mode for us means I get zilcho help. So, I have to entertain, feed, bathe, cuddle & love 3 little people all by myself. Rich is a hard core studier. I’m talking study non-stop until at least 11pm every night. It’s a time when we both have a lot on our plates and we do just SURVIVE. It’s all good. Happens to most of us. I have a lot to be grateful for so I don’t want to complain.

Sometimes as an escape and reminder of how blessed I am, I love to look back at past blog posts and remember all the good and bad that we’ve been through. It always makes me grateful. I came across a special Valentine surprise post that Rich wrote for me a few years ago.

February 14, 2008

I love Jessica!!

Happy Valentines Day!

A great poet once wrote: "Meeting you was fate, becoming your friend was a choice, but falling in love with you was beyond my control." I remember when we first became friends, I was determined not to let myself fall in love. I had grand plans of traveling the world, having amazing adventures, and finding my fortune. I was not going to let anything get in my way. Well, God definitely works in mysterious ways. He knew what I wanted, but had different plans for how I was going to get it. Jessica has blessed my life in more ways than I could have ever hoped for.

We both share a love for travel. Since getting married on May 13, 2006, we have traveled to: Isla Mujeres Mexico, Hawaii, Carlsbad Caverns, and Puerto Rico.

We have experienced many adventures in our travels together, but the greatest adventure I must say is that of our son Aidan. He has been such a blessing in both of our lives. I can’t say that it hasn’t been challenging, but he brings so much light and joy into our lives.

Jessica has also helped me in my path towards finding my fortune. Since getting married, I have set personal goals and have gone back to school to become a pharmacist. I was accepted into the LECOM School of Pharmacy starting in August 2008! I have also realized that the greatest fortune that I could ever have is that of loving, and be loved. What a wonderful blessing it is to be married to the love of your life!

Jessica has all of the qualities that I could have ever hoped for in a wife. She is beautiful, sexy, loving, kind, thoughtful, supportive, loyal, intelligent, and an AMAZING dancer! Jessica is such an incredibly sweet girl, I sometimes think to myself, “What did I do to deserve her?”

After much thoughtful consideration of why God has blessed my life so greatly brings me to the only possible conclusion, as articulated by President Hinckley, “well, you must have helped an old lady cross the street in the pre-existence, it isn’t anything you’ve done here.”

I therefore declare for all the world to hear that I LOVE JESSICA and that I am forever grateful to have her in my life!!

With all my love,

Rich

Am I not the luckiest girl in the world? It made me smile at the love that we had for each other back then. Then I smiled even bigger when I thought of how much we love each other now. He is and always will be my Valentine & best friend. Happy Valentine’s Day, Rich. I love you!

She drove me NUTS!!!

I have made it a priority to make sure that I have some time to myself every day. A lot of my friends are surprised when I tell them that all 3 of my kids take a nap at the same time. I’m surprised that not everybody does this! I have to have a little bit of time to myself, with NO kids, to catch my breath. A 1,2 & 3 year old can really wear you out and a break is the only way I survive. Today, I almost didn’t survive. This little one just about put me over the edge.

Here she is, putting Macaroni & Cheese in her hair. She decided that she wouldn’t take a nap today. Instead, she would follow me around the house screaming. I wasn’t a very happy camper but I survived! And I still love her.

I do have some good news worth writing about! It’s actually about 2 month old news but I just remembered that I haven’t blogged about it yet. First, some background info. When Arabella was in the NICU, after she got the trach, there was talk of putting in a g-tube. Aidan had a g-tube and it is our biggest regret. We wish we would have fought it. If you want to read about the nightmare that it was you can click HERE, HERE & HERE. Basically, it’s a feeding tube that goes directly into their stomach through their side. Not fun. We just wish we would have made them give him more time before putting in the g-tube. Lucky for us, we had a year & a half of experience before we had decisions to make with Arabella.

The doctor said to us, “We don’t send kids home without a g-tube if they have a trach.” What!?!? Whatever!!!!! There is no reason why they should have to get a g-tube if they can eat on their own. So, we fought it! We insisted that she have a swallow study done which resulted in very positive results. She could swallow fine! Ok, not perfectly fine…her liquids did need to be thickened to the consistency of a thick cream. That is a heck of a lot better than a g-tube though! Wow, this story is actually a lot longer than I thought it was going to be. Oh well. It’s my blog.

Now on to the good news. She no longer needs the thickener!!! She has gained enough control that she can drink liquids without any problem. I am so proud of her. I threw away the bottle of thickener a few weeks ago and let me tell you, it felt good!

Good bye extremely expensive Simply Thick. You will not be missed.

Some random happenings

Why, if I have a very easy & organized way to keep the play area clean, do my kids destroy it daily?

This is what it looks like about an hour after I’ve cleaned it:( And this is just half of the disaster. It migrates into the living room too! Hopeless…

Aidan got a haircut a few days ago. I pretty much butchered it. He doesn’t scream the whole time any more which is really nice. Now he squirms. He just can’t for the life of him sit still. This is the sad result:

I had an awesome relaxing date with the love of my life! We dropped Aidan & Maya off at our friends house and then dropped Arabella with another friend and went off on our merry way. It was so nice to be able to focus on each other. This is the second date we’ve been on without Arabella. I didn’t worry about her one bit because she was in excellent hands. So, my love took me to a fancy-shmancy restaurant called The Knife. I definitely recommend it.

I’m not a HUGE meat eater so I really, really enjoyed the salad bar. It was the most AMAZING salad bar I’ve ever experienced. The food and flavors were so outrageously delicious!

We so enjoyed talking the night away with no kids to distract us from each other.

Can’t wait ‘til next Friday:)

Monumental Moment

YES! A monumental moment in our home yesterday! Aidan told me that he needed to poop. I never thought poop could make me so happy, but yesterday I was clapping and cheering & praising Aidan for pooping in the toilet by choice for the very 1st time! He’s done it a couple of times before but only because I caught him and made him sit down. I would have taken a picture but it wasn’t a pretty sight:D

I wouldn’t say he’s officially potty trained yet because he will still have the occasional accident when we are out having too much fun. I’m so proud of him for his accomplishments. Go Aidan!!!!

Arabella’s Status/Decanulation #2

Arabella has been very busy learning how to be a big girl. To be more specific, she is learning that she’s gotta fight for attention. Let’s just say she gets it:D She has become quite feisty and sometimes demanding but lets be honest, how else is she going to survive in our house. She can still be sweet and shy but mostly she’s pretty confident. She LOVES to say “Hiiiiiiiii!”. She will say it over and over again with a big smile on her face to show off all 6 of her pearly whites.

Arabella is 14 months old! Since she came home she has had weekly visits from an Occupational Therapist and now a Physical Therapist. Initially we were concerned with her hands because she never extended her thumbs. As she’s gotten older she has resolved that and other concerns but new ones keep coming up. She has low muscle tone and this is the reason she has certainly not been expected to walk at 14 months. The therapist said that it is best for her to crawl as long as possible to build muscles that won’t be strengthened when she does start walking. They are always so impressed with how well she progresses. Because of her very long and petite build and very flexible joints, the therapist is sure she will be a ballerina:D

As far as her vocal cord paralysis goes, we are very hopeful. With Arabella I haven’t ever allowed myself to think about the future. I feel like I made the mistake of constantly looking to the future with Aidan and I didn’t live in the present. Granted, the present with Aidan was often unbearably difficult but I wish I would have tried to live in the moment more instead of waiting for the future. It’s also very scary to look to the future when the future could be bad. Yes, we have always HOPED that her vocal cords would heal but there is never a guarantee. Something tells me that she is going to be just fine. Why am I so confident? Well, something really cool happened! Arabella pulled her trach out again! How on earth could that be cool? Especially after THIS experience. Well the result was sooooo much better!

So, Monday night we had nothing in the house for dinner and reluctantly decided to go out as a family (CRAZY!!!) to eat. As we were driving, about 1 mile before we pulled into the parking lot we heard Arabella make an interesting sound. It basically just sounded like she pushed air out of trach hole aka stoma, really hard. I guess nobody but us would really know what that sounds like. Anyway, it wasn’t a usual sound but not necessarily concerning. It was probably about a minute from the time that we heard the sound to the time that I actually opened her door to get her out of the van. The very 1st thing I noticed was HER TRACH STICKING OUT!!! Of course, I freaked out but she was just sittin’ there looking at me as calm as can be, not even struggling for air one bit! I quickly calmed down when I saw that she was fine without it and put it back in. I got kind of nervous cuz I was having a hard time getting it back in.

Now, as much as I would love to rush to Dr. Singer’s office and tell him to take it out there are still steps we need to take. Also, I don’t know if she was breathing through her nose or the stoma (hole in her neck). Let’s just say I CAN NOT WAIT for her appointment on the 15th! I hope it’s the good news I’m expecting!

Things they do

Aidan & Maya. They crack me up. They drive me nuts. Never a dull moment at our house, that’s for sure! Just gotta document a few things they’ve been doing lately to make me crazy and make me smile.

Aidan thinks he is so grown up. I love that whenever I ask him to do something he responds with an, “Oh sure!”.  It really makes me smile when I ask him something like, “Hey, Aidan do you want to go to the park?” He responds, nonchalantly, “Sure” like he’s thinking, “Well Mom, if you really want to go to the park I’ll go with you.” Funny kid!

Something Aidan & Maya do that I used to think was cute but now it drives me nuts- Whenever mommy loses her patience with one or both of them and raise my voice at them (hey, it happens!) as I walk away one of them says to the other, “Oh mommy” in a mocking tone and then they both giggle. Yeah, they pretty much make a joke out of getting in trouble. Not so cute anymore.

They also have a secret language that Rich and I can’t figure out. Aidan says something that sounds like “ka ka?” in the form of a question and Maya will respond with yes or no. It’s so funny because they don’t do it very often, maybe once a week but we don’t know why Maya responds yes when she does or no at other times. It’s interesting to us because it almost seems like Maya feels like she HAS to respond. One night, I can’t remember the exact circumstances of why Maya was refusing to respond to anything I asked her but then Aidan said, “ka ka?” And she said in a really annoyed tone, “No!”. Crazy kids!

These two might pester each other to no end but one thing is for sure, they have a special bond. I have always felt that Maya came along as a surprise because she and Aidan were inseparable in Heaven. He needed her and she needed him.

She loves…

bath time