is your heart fonder?

May 4, 2009

sorry for the looong blogging absence. it’s been a pretty hectic month, some good and some bad. claire is continuing to grow and get prettier every day. she is now 28 inches long and 19 lbs 13 oz! uf-da! she is still eating all by herself and we have gone down to 4 feedings a day since she is able to take a bigger bottle and solid food. it’s a challenge to sometimes follow a schedule since she is very sleepy somedays and likes to stay awake at night but we are working on it. her favorite foods are spinach, sweet potatoes and mangoes. she still loves her pacifier and now has a favorite maraca to play with thanks to her nana lisa. her hair is getting very long and we are able to clip her bangs to the side with a barrette. she also has started cooing a lot more and likes to say “ooooo” and “gaa.” as for the hard news, we went to barrow neurological institute a couple weeks ago and she was diagnosed with Infantile Spasms. it is not what we wanted to hear. it usually means that the risk for mental and motor retardation is high. the spasm episodes typically last until age 2 and then a different form of epilepsy takes over.  please join us in praying for claire’s healing and development. we know the medical odds are stacked against her but we believe in a big God who can do big things. we know that He uses ALL things for good. and we trust that He is protecting our claire bear and bringing us through these struggles for an amazing reason. i won’t pretend, many days are very difficult and overwhelming and sometimes i want to just give up. but i know deep down inside me the truth. the truth that God loves our little family more than we can imagine and created our baby girl just as she is. it may not be the average, normal scenario that i dreamed of but it is His perfect plan for our lives and i am so thankful for the gift of claire.IMG_0667

by | Categories: faith, family |

8 comments | leave a comment

  1. Mike Olbinski
    May 4th, 2009 at 3:44 pm #

    Thanks for the update Nicky…I know God does love you guys very much and is right there alongside you ever step of the way.

    I will keep praying for you guys as often as I can!

    She’s looking so cute, and dang that hair is getting long!

  2. Heather
    May 4th, 2009 at 7:06 pm #

    Praying for healing for Claire and strength for you.

    Thanks for the update. She is an absolute doll. Your faith and trust in God is so encouraging despite the difficult road you have been called to walk. I’m glad He never gives us more than we can handle. He knows you guys are strong.

  3. liz o.
    May 4th, 2009 at 8:15 pm #

    Claire is BEAUTIFUL! I wish my babies had half the hair she does:) I will continue to send positive engery your way and I think your baby girl is so lucky to have you as a mother- stay strong!

  4. amber
    May 4th, 2009 at 8:52 pm #

    I had a blast holding Claire at Starbucks. She’s a very special little lady.

  5. Kavita
    May 4th, 2009 at 9:24 pm #

    Gorgeous! I love her hair. 🙂 My prayers and positive thoughts are surrounding your family!

  6. jina
    May 5th, 2009 at 10:42 am #

    i love this picture of claire. she is so stinking cute! love you guys tons!

  7. Heather Anderson
    May 6th, 2009 at 8:35 am #

    What an amazing beautiful little girl. God is bigger than us and he knows our thoughts and attitudes. You are a breath of strength for all moms. Have a great week. Our prayers and thoughts are with you. Love, Heather

  8. Gatito
    December 25th, 2015 at 4:57 pm #

    Haha! I had a friend who was Swedish. She was in my Spanish class with me. I remeebmr I grabbed her dictionary once to look up something in Spanish and realized that her dictionary was Swedish>Spanish!! What a lot of good that did for me!!

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