Friday, May 20, 2011

Nicholas Turns Three!!!







Our sweet little guy had a wonderful birthday that started last night when Jeff and I surprised him with a fish tank filled with four real fish. He decided to name them: heart, spade, club & diamond after I gave him a famous foursome suggestions. Three are glofish and one is a guppy. He loves watching them swim in their tank and really, really wants them to get "out.'" In fact, he was quite upset this morning when we explained that they have to stay in the water in order to breathe. He cried some crocodile tears, but all was well when we distracted him by talking about all the that was to come at the zoo.




We spent the day at the zoo with friends and were lucky enough to enjoy some beautiful sunshine. The animals enjoyed the sunshine too which meant we were able to see lots of them!




Later in the evening we went to my parents house for dinner and Nicholas opened his gifts. He really loves all of his toys, games, DVDs, books, clothes and his new blanket. Thanks so much to all our friends and family for making his day so very special!





Happy Birthday Nicholas!


We love you so very much & are so glad you had such a wonderful day!xoxoxo

Thursday, May 19, 2011

Happy Birthday Letter

Dear Nicholas,

It is the eve of your third birthday. Today I have spent a great amount of time reflecting on the last three years. Please know, sweet boy, that each and every day I have spent with you has been a gift. Every moment I get to have you in my life fills my heart with joy. Waking up each morning to your beautiful light brown eyes, that radiant smile, and those adorable brown curls makes every day a good day.

When your daddy and I found out you would be joining our little family, we were overjoyed! When you were growing in my belly, I spent that time wondering who you would be, who you might look like, what activities you would enjoy, and what your little baby voice would sound like. I loved feeling you kick and move in my belly and I felt such joy knowing you were safe and warm in there. What I imagined was nothing compared to who you are. You are beautiful, brilliant, courageous, silly, and so much fun!

I am in awe of your wisdom and your courage. Even with so much adversity affecting you on a daily basis, you manage to maintain a spirit of love and happiness. You rarely complain. You enjoy each moment as it comes. You are such an inspiration to me. You, my little man, make me strive to be a better person. I am blessed and honored to be your mother. Words cannot express how much you mean to me. I love you to the moon and back. I love you with every fiber of my being. I love you so much, that I would trade places with you in an instant. I would take your disease from you and keep it as my own.

When you were diagnosed with Spinal Muscular Atrophy over two years ago, we honestly did not know if you would survive to see your third birthday, or your second one for that matter. You have shown us that we should never doubt your strength and determination to live. You have a zest for life that is a true inspiration to everyone who has had the pleasure of meeting you. Your physical disability in no way limits your capacity to love and be loved, how much fun you can have, or who God created you to be.

People around the world are praying for you, Nicholas. People who have never met you, but who are touched by your story, are keeping vigil for you. I have no doubt that these people have stormed Heaven and God is listening. He has allowed you to stay here with us for three years and we couldn't be more grateful. This past year was especially difficult as you were hospitalized for fifteen days, had surgery, stopped breathing several times, and suffered miserable pain for a period of time before we could figure out a diet that would work best for you. Through all of those very trying times, you managed to keep a smile on your face and your fighting spirit always pulled through and you came out a healthier, happier child in the end.

You are my hero. You are my daily reminder that miracles do happen. You are a living, breathing miracle. Nothing you do or say is taken for granted. Every small milestone you achieve we celebrate as a family. Whether it's more movement in your arms, tolerating sitting up or standing (in your stander) for longer periods of time, or trying small bites of food...all these things are to be celebrated. You continue to beat the odds, you continue to show your doctors that you are one tough little boy, you show us that this disease is not who you are, it's merely a small piece of you. You have never let SMA decide what you can be, you have never let it label you. That, sweet boy, is a daily reminder to me that you have a warrior soul inside of you. You have God's grace flowing through every fiber of your being and people can see His love when they look at you.

I wish you many, many more birthday celebrations. I hope your weak little body can hold out until medical researchers find a cure for your disease. Even if this is the very last birthday you celebrate, always know how very much your daddy, Ella, & I love you. We think you are amazing. You show us that though you do not have a perfect body, you do have a perfect soul.

Wishing you the happiest of birthdays, my sweet son!

All My Love,
Mommy




Tuesday, May 17, 2011

School Plan

For that last couple months we have been putting together a school plan for Nicholas. He turns the big ~THREE~ on Friday which means that he is eligible for pre-school in the fall. It also means that he graduates from the Early Intervention Program (EIP). I know he will be so sad to have to say good-bye to the wonderful therapists and teachers from the EIP, especially his Julie, who has become like family to us.

Jeff and I have had several conversations concerning schooling for Nicholas. We discussed sending him to public school, homeschooling, or no schooling at all. We discussed his medical issues, transportation, and readiness. He also thought about his ability to socialize and interact with other children his own age. After weeks and weeks of discussion between the two of us, we finally came up with a plan that we think will suit all of Nicholas's needs.

We will not be sending Nicholas to public school, but he will still receive services from our local school district. His therapists (physical, occupational, speech) will all come to our home and provide services the same way the EIP did. He will see his occupational therapist once a week, his physical and speech therapist every two weeks. He will use a web-cam from home to participate in circle time and free time, which is the perfect way for Nicholas to get in some social time without being bombarded by nasty germs. I will also be working closely with his teacher to create lessons that we can do together at home to help him meet his Individulized Educaton Plan (IEP) goals.

We also enrolled Nicholas in our parish's Sunday School program, which we call Religious Education. That will give him the opportunity to physically interact with his peers once per week and get to know some kids his own age outside of the classroom web-cam situation. It will also help him to better understand our faith and learn more about Jesus, although I think they are already good friends.

We are super excited to start this schooling program we've created for our little guy this fall. I think he is going to absolutely love every part of it!

Sunday, May 15, 2011

8 Months



Today our munchkin is eight months-old. Wreaking havoc and loving every minute of it, she is a spirited baby and we wouldn't have it any other way. We love you to the moon and back, Ella Roo!

Saturday, May 14, 2011

A Little Hurricane





I don't know how appropriate "little" is for our baby girl anymore since she's growing like a weed! She's not only growing so quickly, but she is also into absolutely everything. She crawls army-style all over the house and is getting faster and faster everyday. I don't even know why we bother giving her toys because she really prefers to play with shoes (on or off feet), mommy's magazines, and remote controls. She is one busy little girl which is one of the reasons I have been neglecting our blog this month...I am too busy chasing after her and caring for our sweet little boy. Nicholas is truly her biggest fan, encouraging her with his sweet, "go, go" and then laughing when she does. Life may be busy with two kids, but we wouldn't have it any other way.

Sunday, May 8, 2011

A Day for Moms

I am so blessed to be mommy to the two beautiful children pictured above! I had such a great mother's day. Jeff sent me out this morning to have some time to myself so I went to mass and then did a bit of shopping for some spring/summer clothes. Later in the evening we had a delicious dinner with my mom and grandmother (and other family members). Then Jeff and the kids surprised me with a beautiful hanging plant for our patio. Jeff told me that Nicholas just knew mommy wanted some "pretty flowers." Tonight as we put our kids to sleep, I said a little prayer of thanks for both of them, because being their mommy makes me feel so much joy every single day!

Wednesday, May 4, 2011

Happy Birthday To Me

Today I was blessed to celebrate another birthday. Here is my day in photos...




It was truly a wonderful, memorable, sunshiny day! Thanks to everyone who made it so special, especially: Jeff, mom, Nicholas, Ella, and Eric. I loved reading all my wonderful friends' posts on facebook, enjoyed the phone calls, and all the text messages. I definitely felt the love from friends and family today!




Friday, April 29, 2011

Bath Chair?




Yesterday Nicholas received the Rifton Blue Wave Bath System.


It's that apparatus he's sitting in. Doesn't it look like a bath seat to you?...No? Me either.


When the vendor we use brought it by yesterday I laughed out loud at the size of the enormous thing! The top part comes apart from the base so Nicholas can easily use the seat in the bath tub. The bottom part is suppose to be for transporting him to and from the tub which may come in handy as he gets bigger, but I don't think it will even fit through our bathroom door! Nicholas still fits comfortably into his infant bathing seat, so we plan on using that for baths until it becomes too small for him. This new bathing system is currently being used as an awesome living room theatre seat. Nicholas loves how high he is and that he can easily see all that is going on around him. He also has a much better view of his favorite movies and cartoons.


As you can see from the last photo, Ella likes it too. She crawled under there yesterday evening and kept herself entertained for about fifteen minutes. Thank goodness the wheels lock, otherwise Nicholas would have had a trip around the living room via his busy little sister!

Wednesday, April 27, 2011

Baby Bird's 6 Month Photos




Last week Ella had her six-month professional photos taken by my good friend, Heather Purdin. I think they turned out super-duper cute, even if our little munchkin wouldn't crack a smile for any of the pictures. Heather & I made silly faces, fed her, made noises, jumped around...pretty much acted like complete goof-balls to get her to smile, with no such luck. Oh well, maybe she will be more cooperative for her nine-month shoot. To see more of Heather's work, visit her website: http://clickphotoportraits.com/.


Thank you, H! We love them!

Tuesday, April 26, 2011

Equipment Cart



Last weekend I went shopping for a cart to hold all of Nicholas' equipment that can easily roll anywhere in the house. First, I went to Costco and looked at the metal shelf carts that I know many other SMA families use for their kids' equipment. However, the only one our local Costco offered was a 6 shelf cart for nearly $100.00. I decided to keep looking and am glad I did because the next store I went to was WalMart and I found this cute Better Homes & Gardens rolling table on clearance for $37.50! I put it together myself in under 30 minutes. I really like the look of it and it goes with the rest of the furniture in his room. His cough assist fits perfectly on the bottom shelf and his Trilogy and pulse/ox fit on the top shelf. I also bought a wall hook to hang his water bag, which I think looks more aesthetically pleasing than a long medical pole. The only piece of equipment that doesn't fit on the cart is his suction, which is okay for us since the suction machine is light and easy to move from room to room anyway. I am so happy that I was able to find such a great cart for such a wonderful price!