29 October 2009

Day 29 - Update

Our extended family members, whom have been in town most of October, have now returned home.  This has given us an opportunity to "try this on our own" and create a new rhythm.

 Brian is back in school full time.  Earlier, we had considered an option for him to take this semester off after we learned of Bennett's condition.  However, we decided against it since the semester is half over already and since we really need Brian to complete his schooling so he can get a full time job and good insurance (this will always will be our greatest concern for Bennett).  We have been blessed with such wonderful professors at Baylor who have graciously worked with Brian to help him to balance his study with his family's needs.

These days, Breck is spending time balancing work, visiting Bennett in the NICU as often as possible (using once a day), coordinating Bennett's care with his doctors, reading up on Cystic Fibrosis, running the house, writing thank you notes and taking care of Oliver.  Breck has begun reaching out to the Cystic Fibrosis Foundation, looking into programs that will assist us financially with medical bills and speaking to CF families.  This is helping us to accept Bennett's diagnosis and recreate our expectations of the next few months.

Bennett's medical supplies have begun to arrive at home as we prepare to take care of him when he is discharged.   We have each received our flu shots and Oliver was able to get the H1N1 shot today.  We are SOOO thankful that Oliver was able to get the Swine Flu shot.  We were already aware of the need of the shot, but even more so now that we have a newborn with Cystic Fibrosis who cannot get the shot himself.  We hope that we both can get the shot as well soon.

Oliver is doing well but continues to show anxiety related to our changing situation.  Oliver seems very attached to us, especially to Breck, who has been home more lately.  He is not acting out much but has become violently angry when placed to bed.  We are praying for compassion for him and trying to be sensitive to his needs.  Brian rocked him for a long time last night.  He seemed to really like this.  We sometimes get so focus on how to get through the day that we forget that Oliver may need extra hugs and extra quiet time with Mom and Dad than normal.

Bennett is continuing to add weight which is fabulous!  Today was the very first day that Bennett gained enough weight to surpass his birth weight.  This is huge for Bennett because in order to stay healthy, CF kids need to be always be in the 50% percentile for their weight.  So, while he has struggled with gaining weight, things are looking up!

1 comment :

  1. Breck, I am so glad to hear Bennett has finally surpassed his birth weight! What a huge accomplishment. I hope he is able to go home soon. I can't wait for you all to be at home and be one big happy family. :)

    Liz Sherman


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