Monday, November 15, 2010

She turned 4 months old on Sunday...

This past Sunday, we were blessed to celebrate Lucia's 4 month birthday.  As crazy as it may sound to celebrate each month's birthday (part of me wondered what the baker thought when he was writing out "4 month" on the cake -- probably that I was some obsessive pyscho mom...which actually may be true  :) ), I was inspired to do this when I watched this incredible video of a little boy named Eliot, born with trisomy 18, and lived to be 99 days old.  His parents celebrated every month of his life with a birthday party.  His story is called 99 balloons - and if you feel like crying your eyes out, please tune in and watch.  :)  Actually, please don't mind my sarcasm, it is quite a beautiful story, and as I previously said, a GREAT inspiration to me.

So Lucia decided to initiate her birthday festivities on Sunday by pulling out her feeding tube right before church, as she was finishing up a feeding.  I told you all that she is strong-willed.  :)   So, I just decided to let her be free from all those bandages on her face for a few hours.  She is so sick of those darn things and that feeding tube, that she's always swiping at her face to pull it out.  This is both good and bad -- bad because it's a challenge to put it back in and she hates when we do this, and good because, as her dietician put it: "I applaud her fine motor skills."  I am actually proud of her that she can do this.  :)  She knows what's bothering her and makes sure she does something about it --- that's my girl!

We had a wonderful Thanksgiving luncheon this past Sunday after Liturgy, and that was kind of Lulu's birthday party.  The beautiful choir at St. Anthony's and all the parishioners in attendance sang "God grant you many years" to Lucia.  I hardly made it through the hymn, because I don't think those words have ever meant so much to me.  Thank you dear St. A's family for loving Lulu and for praying for her - please keep the prayers coming.

And speaking of prayers, just a few specific requests if you all wouldn't mind.  Tuesday (which is technically today as I write this) we have various doctors' appointments for Lucia.  One is an evaluation with a GI surgeon so that we could seriously look into doing away with her feeding tube and rather putting a G-button on Lucia's stomach.  If we go the G-button route, this would require surgery and they would have to sedate Lucia.  Ultimately, the G-button is a MUCH better solution than the feeding tube, but with her heart condition, they may not go ahead with the sedation and surgery.  The other appointment we have is with a different cardiologist than the one we were previously seeing (yes, the one I called a jerk-face :P ) .  We hope and pray that this new doctor will work with us for Lucia's best interest, and we are also hoping that he's got some good bedside manner, unlike the previous one.  Thank you so much for the prayers -- we are truly humbled by them and are SO grateful. 

Lulu with mommy and daddy at the luncheon after church on Sunday.  If you don't see her neck, it's because I'm still trying to find it under all those chins.  :)  I LOVE YOU LUCIA!!!


  1. will say some prayers today! glad you can see another doctor. What a beautiful picture of the three of you. love from Ottawa!

  2. Happy Birthday, precious Lucia! You and your Mommy & Daddy are in my prayers. <3

  3. We'll be waiting for an update on the surgery and the new doc.
    What a beautiful picture of the three of you. God grant you many years Lucia. dakhil 3ayna l ammoura.

  4. Ramia I freaking love reading these posts. Oh and I love you LULU, Happy Birthday! I need to come see you soon.

    Tony F

  5. Love you, sweet angel! See you soon! Rams--keep the posts coming! It always brightens my day to see new pics of my princess…and of course you and Fr. A!

  6. I love Lucia and I love her chins! She's gorgeous.

  7. I am so glad I got to be a part of Lulu's 4 month Birthday celebration. It's truly is an honor. Her and her chins are so precious! Beautiful actually. I hope the doctors appointment went well:) I am sure that God will choose the best thing for Lucia. I love you guys!!


  8. Ramia, thank you for inviting us into your world! Happy Birthday to cutie pie Lucia! I love this picture of the 3 of you!! God bless you all!!!

  9. Ramia, our thoughts and prayers are with you every day. I am glad that you started this blog so that we can know how everything is going for all of you. Lucia really is a miracle child and she is just beautiful. My dad asked about her everyday until he passed. I am happy that she is doing so well.

  10. Gosh I love this lil girl...she is the cutest and sweetest thing!! And I love her strong will, I can see it shine through every once in awhile. She always seems like she has something profound she needs to say :) Praying for you guys!

  11. What a lovely little one, we were looking up lucia day pictures and found your blog instead, Lucia is our favorite saint.

    Before I had children I worked in a special needs class and one of the sweetest kids i ever worked with was a little 4 yr old girl with Trisomy 18.

    Keep fighting little Lucia and Many Years on your 4 month b-day. Prayers for you all.

  12. Hello, you don't know us, but I think we may have mutual friends in the Warwicks. Anyway I just wanted to let you know I think your Lucia is just beautiful and very lucky to have such a strong and wise mama. I feel confidant in saying that since I know exactly what you guys are up against, being in the same situation with my 3 month old son. He doesn't have t18, but another condition, hydranencephaly, which is also terminal. I know that words go only so far, but your Lucia is in our prayers.
    All the best,
    Anna DuMoulin