Saturday, November 30, 2013

Small Steps Forward



*DAY +52 POST TRANSPLANT & 59 STRAIGHT DAYS IN THE HOSPITAL*

     Our little Hazelnut has been out of the ICU since Monday and we are back in the Bone Marrow Transplant Unit.  It has been such a blessing to not feel like everything is so critical all the time.  And it truly is such a HUGE step forward to be out of there, so we are extremely thankful to God for getting us through the toughest three weeks.  Over this last week Hazel has had many ups and downs, but overall is making small steps forward.  She is still not speaking and seems to be choosing not to respond to us.  She also seems overwhelmingly wary of any medical professional who come in to see her.  She has lost all trust in this world and seems utterly traumatized and possibly depressed.  Aaron told me today that every time the nurses tried to simply take her blood pressure, she broke out in tears.   Despite all of this, God has shown us many small improvements that bring us glimmers of hope each day.  She has been interacting with us all quite a bit more.  She played with some toys, has given us a few more smiles and giggles (not as much as we want of course!), went on a ride in a wagon and even swayed/danced slowly in her seat to some music with Daddy.  The oxygen nasal cannula has been removed, she has begun sitting up on her own again, and today even took a few sips of apple juice, which means they are beginning to wean her liquid nutrition!  She seems to be in very little, to no pain at all and her urine has been clear for a week!  In addition, she has been assessed and has been working with Occupational Therapists, Physical Therapists and Speech Therapists.  They have spent most of these days just trying to get her comfortable with them and building trust, but they are happy with the small improvements she is making.  They will continue to follow her while we are inpatient and will be able to determine if she needs rigorous, inpatient therapies, or if they are therapies we can continue from home.  Also, the doctors believe that she should be completely weaned off the drugs within the next week or two and, at that point, we can begin talking about going home.  SO PLEASE PRAY WE CAN BE HOME FOR CHRISTMAS!!!!!  




     I have only been at the hospital for two days this week because I was sick over last weekend and did not feel well enough to return until Tuesday, and then on Thanksgiving my Uncle Steve and Aunt Laura were so kind enough to spend time with Hazel at the hospital so Aaron & I could spend the holiday with our other children and family.  It has been so beautiful to be able to spend such an extended amount of time with the kiddos.  However I have also seen how hard it has been on them and everyone else.  Aaron has been working so unbelievably hard and has had to take on the role of a single parent.  He goes to work for our family full-time at a job that he loves but can be stressful.  Then he drives the 35-45 minute commute home to only be able to spend an hour or two with the kids (which consists partly of getting them ready for bed, cleaning up around the house and other busy work).  During a regular week, he is only able to get out to see Hazel a couple of times, and mostly has to wait until the weekend to see her (which must be so hard!!).  While he is at work, my mom takes care of the kids three days a week and my mother-in-law (who has two younger daughters at home still) watches them the other two days.  As much fun and independent as my kids are; they still require quite a lot of care and devotion.  On Mondays, Tuesdays and Wednesdays, we have a babysitter pick up the kids at 5:00pm from the grandparent's house to give them a break and to help Aaron by making sure homework has been done, by getting them fed, bathed and sometimes ready for bed (this has definitely helped relieve the stress so much).  So needless to say, EVERYONE is exhausted and EVERYONE needs a reprieve (especially my hubby).  So please pray for peace, rest and a speedy discharge from the hospital so we can all resume a small amount of normalcy.  One thing I will say, that despite how hard it has been for us all, we feel tremendously blessed to have the support system that we have.  The fact that we haven't had to worry about the logistics at home is an incredible thing to behold.  We can't even begin to thank those who have supported us through this time. 
     Another way that help has been coordinated for our family is through a wonderful organization called Here To Serve, created by my now dear friend Katie Quintas who's teenaged son and husband were diagnosed with cancer within six months of each other several years ago.  She knows all too well what a family needs on the home front, and since her son has been caner-free, she wanted to come along side other families in crisis to help them figure out how to get the help they need. Through her organization, we have an online "Care Community" where all of the help we need can be organized in one central location.  On our page you can find a meal calendar, a list of needs, family updates and much more. If you would like to join our Care Community, please follow these instructions:
  • Go to www.heretoserve.org and click on the "JOIN" button.
  • You will be asked to fill out an extensive registration form indicating you are interested in joining Hazel's Care Community.
  • Once completed, you will be emailed a direct link to Hazel's Care Community, and once you follow the link, you will become a confirmed member.
  • As you take this journey with us, please consider offering your donations and support to this wonderful organization so they can keep serving families in need!

30 comments:

  1. Wrapping the HEALING PROTECTIVE ARMS OF GOOD HEALTH AND WELL BEING AROUND PRINCESS HAZEL. GRAND PRINCESS HAZEL AND HER LOVING AND DEVOTED FAMILY THE MIRACLE THEY SO BADLY PRAY AND DESERVE. PROVIDE THE POSITIVE AND HEALING ENERGY GRANTING THE BLESSINGS THAT PRINCESS HAZEL NEEDS NOW!!!
    HUGGIES AND KISSES
    GAMMA LOVE

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  2. I send my blessings to your precious little princess may the the Lord heal her. her smile is absolutely priceless :-)

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  3. Princess Hazel and Lauren you are both amazingly strong and you will get through this! I am so happy to hear she is out of the ICU and I can't wait to hear that she has gone home, which I pray will be really soon! As always let me know if you need anything or if Hazel would like a visit. I made her a video if she's up for watching it: https://www.facebook.com/photo.php?v=564164450316216&set=vb.459887624077233&type=2&theater

    Tell her Rapunzel is praying for her! <333

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  4. I have been waiting for news of your sweet girl! So, so happy to see her getting better! What an amazing fighting spirit she has!I hope and pray that she will be home happy and healthy for Christmas. She is truly a miracle in progress !

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  5. P.s. My daughter Grace (she's 2 yrs. 9 months) I asked her what she wants Santa to bring, she put her hands together to pray, closed her eyes and said "make Hazel better"
    I couldn't agree more.

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  6. My 10 month daughter is also named Hazel and her nickname is hazelnut. I have just recently started following Hazels page on facebook. I hope everything goes well for your family and me and my hazel will be sending prayers for your family.

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  7. She looks wonderful

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  8. I am not sure how I came upon this website, but i now get all of your updates.... I believe this has been divinely guided. I have been praying for you and your family.... and especially little Hazelnut. She is a sweet little angel who is doing Gods work.... bringing humans together in love and prayer! You are blessed to be her parents. She is blessed to have you as her parents. Remember there are no mistakes in this life.... some day this will all make some kind of sense. In the meantime, love your children and take care of yourselves.... allow those around you to help and know there are infinite prayers and angels all around. Namaste.

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  9. hazel is looking so much better i hope shes home for christmas, it looks like she will be,always praying for the family

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  10. Jeremiah 29:11 "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future".

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  11. May God bless Hazel, you and all your family, I am praying for you all, Marcia Brady

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  12. So pleased to see hazel much improved God bless her and you all..Hope you will soon be taking her home where she belongs...My love and prayers to you all....xxxxxx

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  13. What a Blessing for Thanksgiving week. To see Hazel drinking her apple juice was pure joy to my heart. You have a fighter there. I continue to pray and watch for your posts. May Hazel get well enough to go home soon so you can all have a family Christmas. God Bless

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  14. Prayers go up continuoulsy for your Hazel and entire family. We've been praying for a "Christmas miracle" for your beautiful Angel to come home soon. God hears prayers and I believe and place trust in the Lord for granting the inumberable amount of prayers going up for Hazel very soon.

    She is making progress, and the little darling being reticent of the medical personnel, who can blame her? She's been through more than anyone could imagine, poor darling girl. But, she is blessed to have parents that are so loving and caring, and a community that extends throughout the world. She's captured our hearts and we are all waiting with bated breath to learn she's home, and the day that she is fully in remission....which WILL happen, I am positive that is God's will for her to be healed and be a light for His name and glory.

    With Blessings, Hugs & Love~

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  15. With our Lords help Hazel will be home for Christmas, our prayer is that Jesus will give you & Aaron strength & peace as you go through recovery with little Hazel. In Jesus name!!!

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  16. Thanks for the update the best Christmas I could ask for is that Hazel is home for Christmas with healing continuing. Our prayers are with you wi have an awesome God and I believe that He is in control.. Hold on tight.

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  17. Yea!! So glad to hear she is better. On Thanksgiving Day my 5-year-old granddaughter said she was thankful for family. And you surely have that, not only yours but also God's family. Prayers still going your way for Hazel's quick recovery and going home. Hoping for a bright new year for you guys. God Bless You. Keep the Faith!!

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  18. So happy she is better and praying she is home for Christmas. .. so she can wake up on Christmas morning and be in her on home surrounded by family! Continue to heal this beautiful sweet baby girl in Jesus name. ..

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  19. I don't know how you guys manage all this, it's truly a miracle that you get everything and everyone gets taken care of. Your husband is amazing.. Hazel seems on the road to recovery. I hope that her speech comes back soon. But her giggles and smiles speak for her. All our prayers, Susie and Arla.

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  20. I've been praying for Hazel, your family, and especially for the 2 of you because I'm sure as a parent, this was beyond difficult. I think you guys have done a wonderful job. May the Lord bless you and keep you and heal Hazel.

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  21. Praying for you Hazel, you are so special, dont you forget that!
    /jasmina from Sweden

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  22. ALways in our thoughts and prayers! Princess Hazel WILL be home for Christmas with her family!
    God Bless for a speedy recovery!

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  23. Love that smile.Continued prayers.

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  24. Our Dear Gracious God in Heaven, we come into your Holy temple with praise and worship. We come with thankful hearts in all you have done are doing and will do for baby Hazel and her loving family. Father we stand in agreement together in unity and where we stand two or more you are in the midst of us. Father faith believing, not wavering we lift Hazel and her entire family to the arms of mercy, to your throne of grace and your provision. Father, we thank you for the continual healing of Hazel, Father we pray for a divine touch from you, bring healing swiftly upon the wings of Eagles. With each moment of breath bring healing,complete healing to her body,. Take away every anxious feeling, Father take away every fear, dry her tears and put your joy of life into her mind, body, heart, soul and spirit. Father wrap Hazel in your loving arms of trust. WE pray that the Holy Spirit will reveal love and trust to her as she endures her journey into health. Father, bless the care givers, the Doctors and the nurses.Father, thank you. Lifting up Aaron, his wife and family. Father surround them with a peace that surpasses all understanding, your sweet peace that flows like a river, Father we pray for the comfort of the Holy Spirit to bring them peace, healing and rest. Father we pray that you would give them a sweet peaceful rest as they lay there burdens at the feet of Jesus. Father you are our Rock whom is higher than us, our strong tower when we are weak, keep this family hidden under the safety of the wings of the Almighty. Father thank you, may Love shine forth as the noon day arises. May this Christmas be filled with healing, love, laughter, faith, prayers, hope, peace, and
    complete family and loving friends. Father thank you, for your faithfulness and mercy endures for ever. your unconditional love is from everlasting to ever lasting. We lye our hearts of trust in your hands of grace. Thank you, we give you all the glory, we give you praise and honor you, Oh Lord. In the wonderful, precious name of Jesus, your Son, we pray, Amen.;}

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  25. Lord, thank You for getting this family through. Thank You for all the steps forward and Your watchful eye. Lord, please return Hazel’s speech and provide her with more lively responses. Please let no one come near that does not have her best interest at heart. Your protection is her defense. Please show this family that all trust lies with You; all hope lies with You, and You are watching over all of them. Please protect all members of this family from unrest, depression, and fatigue. Rather lift them up with rest, compassion and Your strength. Please provide Hazel comfort and exponential hope each day. Thank You for the interactions Hazel is able to share, her play, smiles, and giggles. These gifts bring tears of joy. Thank You for music, Daddy, Mommy, and family. Thank You Lord for allowing her breath, strength to sit up and play, and basic nourishment. Thank You for freeing Hazel from pain more each day, for her systems returning to normal, provisions of OT, provisions of PT, and provisions of ST. We pray that her need for these therapies are minimal. Lord, please continue to get Hazel off of the drugs and restore complete health. Lord, I pray Hazel regains strength, health, and the love of life. May Your will be done and thank You for all You’ve done in healing Hazel. We continue to petition You for Hazel’s complete recovery. Amen!

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  26. Hang in there little Hazel. Soon your trust will return. In the meantime-know that there are many people out there thinking about you. Mommy and Daddy- you guys are super stars. Looking forward to more good news.

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  27. Sweet little Hazel has made such great strides, and I feel certain that she will be home for Christmas, where all of you can be together in each other's love. And that will make my Christmas. Hopefully, by now she will be weened off icky food and trying to get some real food down. Nothing makes a person feel better than a real meal. After she works with the speech, physical and occupational therapists, she will start coming around to medical personnel again. Of course she's weary, as that precious child has endured everything that's been thrown at her. Her personality is about to shine through, and that is something that can't be beaten!! I pray every day, several times a day...almost continually at times. I am sending her all of my strength today and every day, and love to your strong family <3

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  28. great news for sweetie peanut will keep praying

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