Tuesday, December 31, 2013

What a wonderful year it has been

Wow. Today is the end of 2013. It is hard to wrap my head around just how much my life has changed in one year. I have been through some pretty hard times, and have had to make big life adjustments, and some amazing times filled with happy moments that I will cherish for the rest of my life. Personally, I think that I have done a complete 360 this year, in the best way possible. My life is no longer about my needs, and what I want.... it is all about putting Anthony and my family first. I could never have predicted how much being a mother truly changes you. The love I have for that little man is more than anything I can put into words.

This year my relationship with my husband has completely changed too. We have been put through so many tests and they most certainly have not been easy. But, it seems that no matter what life throws at us, we come out a long stronger having gone through it together. I look at him in a whole new light as a father, he is amazing and I am so thankful that he is in my life.

I wouldn't change anything that happened this past year, whether it be bad or good... because it got us to where we are today. It's our story, our amazing life-changing year, our family... and I love it! And, I am so thankful for all of the support and love that this year has brought.

Actually, I retract that previous statement... I would change something. I wish I could just go back to some of those moments where I was at my lowest, and tell myself that it is all going to be a whole lot more amazing than I could ever imagine. That this year would be the absolute best year of my life.

I hope everyone is able to take a moment to reflect on their past year tonight, and remember everything that got you to where you are today. Happy New Year!! I can't wait to see what 2014 has in store for the Mango family :)

Happy New Year! Love Anthony :)

Thursday, December 26, 2013

A Christmas "Birthday"

My little nugget turned 5 months old on Christmas day! He sure is getting big fast!

Date: 12/25/2013

Age: 5 Months

Weight: 15 lbs 8 oz

Height: 26 ½ inches

Head Circ.: 41 cm

Eating: He eats 3-4 oz mixed with equal parts oatmeal cereal every 2-3 hours. He also eats pear and prune baby food three times a day.

Sleep: Still the best night time sleeper (9pm-7am), but he does not nap as frequently throughout the day

Likes: His “laptop”, rolling over, laughing, having baby conversations, standing on our legs, grabbing faces and yelling, sleeping in our arms

Dislikes: always being stuffy, his new way of eating only one ounce at a time (he isn’t very patient when waiting for the next bottle), naps

Milestones: Rolling over, standing with assistance, talking more

Oh no big deal guys.. I'm just old enough to use the arm rest now

...muah.. you're my favorite owl, shhh don't tell the elf!

umm... oh shoot...did you guys hear that? 

AHH I'm five months old!! 

just hanging out, being a big boy 

Dad, I'm five months old.. see my sticker? 

Christmas was so much fun with Anthony! I'm sure with each year it will be even more exciting. I have always loved Christmas, and this time of year. But, it is true that as you get older Christmas starts to lose its magic. Having Anthony really makes the holiday fun again, with starting new traditions and turning everyone around him back into a kid who believes in the spirit of Christmas. 

Splitting time with each family during Christmas is difficult, especially with a new baby that everyone wants to spoil. Joe and I felt like we were constantly on the move! (I must say I am proud at how close we are getting to actually leaving the house on time now... we're pretty good with knowing what needs to get packed/ready so we can get going) Even though I was so tired from traveling to each family, I still had an amazing Christmas. Regardless of how tired I was, I would do it all again in a heartbeat because that is what this time of year is all about... Family!! It warms my heart to see all of the love that surrounds Anthony. He is such a lucky boy to have all of these wonderful people that love him so much. 

Along with all of that love comes tons and tons of spoiling! I think we might need a bigger house after this Christmas.... we are running out of places to put all of his toys. 

We also revealed Anthony's God Parents! My sister and Joe's brother! We couldn't have picked two better people to guide Anthony through life! Love you both! 

My side of the family with Anthony (My dad as Santa)

Our best present this year! I love my family

Grandpop and Grammy 

Joe's side of the family with Anthony

Beep Beep! Watch out world, Anthony is hitting the streets! 

Ahh!! Girl cooties!!

 Opening presents with Mimi, Poppy and Aunt Lauran

Presents with the Mangos

such a little gentleman in his Christmas sweater 

a pro at holding up his head

having fun with Mom Mom and Pop Pop

Hanging out with my Mimi and Poppy

Second Christmas married, and it was the best one yet 

Hey, yo! Joy to all!

My all time favorite picture of Anthony

little ham

our best christmas present! 

"Mom, can I eat this light? No? Too bad mommy I am going to anyway"

My amazing family 

Merry Christmas to all love Santa and his best helper

Wednesday, December 18, 2013

Swallow Study and first time with solid food

Yesterday Anthony and I took a trip to a great local children's hospital. We had an appointment to get the Swallow Study done. I was actually pretty excited for Anthony to get it done, I had heard that it was interesting to watch. This is how it all went down:

We walked into a room and the doctor warmed up Anthony's milk I brought from home. She divided the milk into three separate bottles. In each bottle she put barium (a mixture to help the milk show up in the X-Ray). She also used my oatmeal cereal I brought from home to mix into the milk. Each bottle had a different amount of oatmeal cereal added, the first bottle had none, the second had enough to make it a nectar consistency, and the last bottle had the most making it as thick as honey. The purpose of this was to see what happened when Anthony drank each bottle. (If you don't remember from my previous post- we had to make an appointment for a swallow study because Anthony had been sounding liquidy when he was eating.)

After she mixed all of the bottles, Anthony was placed in a little highchair next to an X-Ray machine. Two other doctors came in the room, and the Swallow Study began. I fed Anthony each bottle, and we did it in order of thickness. The excitement I had felt before quickly went away after the first bottle. Anthony started with the milk that did not have any oatmeal added. As soon as he took one suck I heard one of the doctors exclaim "he's aspirating, he's aspirating.. take it out now!" It startled me, and I wasn't expecting something to be wrong. Up until this point, we have only really heard good news about Anthony health-wise... we've been very lucky. So, I guess I just kind of assumed that these results wouldn't have been any different. They then had me feed him the other two bottles, and said things like "he is penetrating, do you see that? Yes .. he is penetrating across the board." 

I had no idea what they were talking about. I was still a little shook up about how they reacted to him drinking the first bottle. Honestly, I didn't know what they meant when they said that he was aspirating, or penetrating. It was all a foreign language to me. All I know is that my baby boy did such a good job. He was patient in between the bottle switches, and kept a smile on his face throughout the test. Better than I can say for myself. I was a nervous wreck. I hated that I was there without Joe, because I had a feeling that I was going to get not such great news.

When the test was all over, one of the doctors took me into a conference room with Anthony. She took out paper and started to draw me two pictures. I am a very visual learner, so I was happy that instead of using doctor lingo, she took it down a notch to explain it to me on my level.  

In both of the pictures above, the pink represents the milk going down the throat. When Anthony was aspirating, the milk was going straight into his lungs... scary! When he was penetrating, the milk started to go towards the lung, but then bounced back out to where it was supposed to be. Even though the milk goes back into the throat during penetration, it runs the risk of trickling off into the lung since it is in that area for a short period of time. All of this seemed pretty scary to me and I was starting to get nervous for Anthony. She then brought up the risk of Anthony getting pneumonia from liquid in his lungs.

Once I heard pneumonia, my head started to spin. If you remember, Anthony was sick for a little over a month with what Joe and I thought was a cold. He was really stuffy, and had a nasty cough. Actually, he still is occasionally stuffy and coughs a few times throughout the day. Could he have the beginning of pneumonia?!

We talked for what seemed like forever, because I had a million questions.

-So, every time he makes that liquid noise when he eats he is aspirating? ... yes, most likely.

- Is that why he coughs too? ... yes.

-Did he ever not penetrate or aspirate?... no, he full on aspirated with the breast milk alone, and penetrated each time no matter what the thickness was.

-He only JUST started making those noises during eating when he was three months old. Why did we not notice it before? Has he been getting liquid in his lungs this whole time?- When babies are little, their throats are not fully "developed" (I cant remember the exact wording she used). When the babies grow, their throats grow and open more allowing for more room for the milk to slip through.

-Where do we go from here?......

She really didn't have an answer for that last question. We bounced around a few ideas and it started to sound like she didn't want him to eat breast milk anymore. I would have freaked out! She told me that we had to thicken his milk, but that the problem was breast milk dissolves the oatmeal a lot more than formula would. So, if we thickened it just a little... by the end of the bottle it would be way too thin for him because the oatmeal would essentially be gone. We left a message for Anthony's speech therapist so that we could all discuss this and come up with a solution together.

I think the worst part of the day for me was realizing that I could no longer breast feed Anthony. When I asked the doctor, and she told me no I had to fight back the tears. If I didn't, I would have had a full blown break down in the conference room. (I saved that for when I got home). I seriously lost it. I couldn't believe that the last time I had breast fed him was actually the LAST time I would ever breast feed him. It made my heart hurt. With the decision made that I was soon going back to work full time, I was scared that Anthony would forget who I was through out the day. But, I found comfort in knowing that after work I could come home and have bonding time with my son while I breast fed him. Looks like that idea is out the window. It is so true that you don't realize how much you like doing something until someone takes it away from you. I am honestly still struggling with the fact that I can no longer have those moments with my son. It's heart breaking. But.. I would do anything for Anthony, and if he would aspirate during breast feeding I would certainly never think of doing it.

Later in the day, they both made a decision to have Anthony's milk thickened to a honey consistency. They figured that if it started out really thick, by the end of the bottle it would still be as thick as nectar and he would never aspirate, just penetrate. It all sounded like a great plan in theory... but it was HORRIBLE to execute. Anthony took forever to eat his bottle. It was way too thick and he had to use so much energy to get it out of the little pin sized hole in the nipple. He was very frustrated because he was so hungry, and couldn't get the milk out. I felt like a horrible mommy. So, Joe and I decided to raise our spirits and try something new. I talked with his doctors today about the possibility of starting Anthony eating "solid food". (It was more like just really thickened breast milk with oatmeal.) They all gave us the green light. Joe I think was the most excited. He set up the high chair and mixed the food up.

Anthony actually did an amazing job! ... and so did Joe, he was a lot better at feeding Anthony with a spoon I'll admit! They boys had a lot of fun. But, after feeding we noticed that Anthony was aspirating a lot.. and it was scary. We think it was because he was taking in whole spoonfuls of food at a time, and that was a little too much for him to handle at once. Looks like we wont be trying that again for a little while.

Um, Dad.. what the heck is this thing in my mouth? 

hmm, it's pretty weird

What is that mom? You say I am a big boy when I eat this? 

okay, okay let me try again....

Hey! Wow guys, you're right! This stuff is awesome! I want more!
VIDEO- Anthony eating solid food for the first time 

The next morning, I had a break down. I didn't go into work because we still were unsure about how to feed Anthony. I spent the entire morning on the phone with doctors and therapists to try to solve our problem. I was just as frustrated as Anthony, and wanted my poor baby to eat! We decided that we were going to do a different method. We now feed Anthony one ounce at a time. This way we can put less oatmeal cereal in it, and it wont dissolve as quickly because we don't add it to the other ounces until he is ready to eat them. It is all trial and error, and fingers crossed that this way actually works.

Friday, December 13, 2013

He Did It!

I have been working so hard with Anthony on rolling over, and yesterday he decided it was time to do it all on his own! Before that, he was getting the hang of it but still needed a little "push" to get the roll started. Last night he was kicking his feet up in the air and I just knew he was finally going to try it by himself. I caught the tail end of him rolling over on my phone. It was such an amazing moment, I couldn't help but cry. This little boy works so hard and he accomplishes so much every day. He is so strong, and I know that there is no stopping what he can do! My little boy is growing up right before my eyes.

Go Anthony! 

Watch the video of him practicing rolling for a few days, and then the clip of him finally getting it at the end! I am so incredibly proud of my son! 

Tuesday, December 10, 2013

It's beginning to look a lot like christmas

I have really been slacking lately with the frequent posts! Sorry! It has been so crazy around our house, and I don't think we ever have a free second. Well, okay... I lie.. sometimes we do have a free second but that is when we like to spend family time together and play with the nugget! 

I have always loved this holiday season, and couldn't wait to experience it with Anthony. But, it actually has been pretty stressful. December seems to be jam-packed with places to be and people to see. I wish time could just slow down so we could enjoy snuggling under a blanket as a family, by the fire, with hot chocolate listening to Christmas music. Even though we have been non-stop since Thanksgiving, we still have moments as a family that bring me back to what I love most about this season. It's a season filled with love, family, friends, traditions, and warmth. Now, when I say warmth I most certainly do not mean the weather. I can not believe that it is not even winter yet, and we already have more snow than all of last year's snow combined! 

What have we been up to?


Thanksgiving was a success, a long day... but a lot of fun. Joe comes from an Italian family that eats very early, so we were lucky that we could make it to two "dinners". We went to Joe's family for a lunch/dinner and then headed over the bridge to celebrate with my family. There was SO much to be thankful for this year.
 I am so lucky to be blessed with an amazing husband, and most of all for Anthony. We have all been through so much in 4 short months. Our lives have changed more than we could have ever imagined, but Anthony has brought us so much happiness and joy. I am so thankful that he is a part of our family and is healthy, I am thankful for my husband that works so hard to keep a roof over our heads and food in the pantry, I am thankful to work in a school that makes it easier to leave Anthony all day because the staff is so wonderful, I am so so thankful for all of the support and love we receive from our families and friends everyday. 
My cute little turkey!

Anthony had physical therapy. He usually does a fantastic job, but that day he was super tired and I had to wake him up out of a deep sleep to do pt work. Lets just say he was not a happy camper. Luckily we have a great therapist that understood, and worked around Anthony's cranky fits. He did a good job considering! He is SO close to rolling over on his own. If we tap his leg or tickle his back a little, he will grunt and roll himself over. I am just waiting for the moment when he initiates the roll himself! That is when I will consider it a true milestone. 

He had his four month check-up at the doctors, I drug Joe along this time because I hated doing the two month appointment alone! Anthony took these shots like a champ! He was a little ham and did all of his best "tricks" for the doctor, she was so impressed with his progress! When he was weighed and measured we checked the charts and here is how he stacks up: Anthony is 50% for both height and weight on the "typical" scale. He is in the 90th percentile for height and 75th for weight on the Down Syndrome scale. Go Anthony!

He loves the paper at the doctors office! Such a happy boy! 

He had his Speech or "feeding" therapist come. Recently I have been a little concerned with how "liquidy" sounding Anthony is in his throat when he eats. It is almost as if he cant clear his throat and the milk is still in there. He also has been spitting up a lot more than usual. I wasn't sure if it related at all to his cold, or if it was a feeding problem. The therapist recommended that we add oatmeal cereal to his milk to thicken it up so he doesn't try to drink it so fast. So, off to the grocery store we went! What a big boy eating oatmeal in his milk now. We also set up something called a modified Barium Swallow Study that he is getting done next week. They will put something into his milk, and take an X-Ray of his throat/stomach as he eats to make sure that it isn't going in places it shouldn't. Hopefully we figure this all out soon! For now, the oatmeal seems to really help with decreasing the spit up and liquid sound. 

We went to get Anthony's first Christmas tree this past weekend. We went to three different tree places, yes three! Finally we found a tree that fit our budget friendly wallet. Trees seemed to be very expensive this year.

This weekend brought Anthony's first snow storm! I love watching the snow cover the ground and streets like a big white blanket. Everything seems so fresh and beautiful. We were on our way to go take a picture with Santa, and were caught off guard with how quickly the snow was covering the streets. We decided to stay home and enjoy the day, and save Santa for another time. 

 VIDEO- Picking out our christmas tree

VIDEO- Anthony "MTV Cribs" Christmas edition

Have  a good night everyone!