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!