Scheutzow Ranch

I think about posting here daily. There is so much I want to record, so much I want to be able to share. And yet, obviously, so much more important going on in my day to day. So, I take it 1 day at a time. I often feel the regret already. I desire to have a place to look back on all these days, memories, milestones. I fear I am too exhausted to file them in my memory, or intentionally block them out. I will want to remember this journey someday. So, I post what I can, because having something documented is better than nothing.

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Current facebook update:

Hi Everyone! I feel like we are past due for an update! Many of you have been checking in on us and asking how we are or what we need. We really appreciate it! Currently, there is nothing we need besides continued prayers. We are trying to get back to normal around here, and it has felt really good. It is actually nice to grocery shop and try to throw dinner together every night. We are able to feel pretty normal except for the nursing care, medical prep/deliveries, and many doctors appointments. Some days are certainly more hectic and we go into 'survival mode' but we are thankful to be home and together.

Lee has been making great progress. Since the last time we updated, Lee did get sick with the influenza virus. He was not showing classic symptoms, but we knew something was wrong. After a week full of extra ultrasounds, x-rays, and blood labs, a nose swab finally revealed he was recovering from influenza. Most children in his situation need to be admitted to the hospital during illness, so we are so thankful that he stayed home! The doctors attest him handling it so well to his immune system and breastmilk. I know that the Lord's favor and goodness is upon us as well. Because of that sickness and a couple other hiccups (vaccines, etc), we haven't been increasing Lee's continuous feed very much (He is at 22ml/hour - 18 hrs/day currently, if you want details). However, he is absorbing what he is getting and growing well. His IVs are now down to 11 hours at night (we will keep it at that time so I don't have to get up in the night, but the calories will continue to decrease as he makes progress). They have decreased calories in his IV every week so far! We were allowed to introduce solid food (he's not into it), and Lee nurses directly (after I pump some) 3x a day. This is so important for his oral eating skills, muscle tone, etc. Lee also goes to physical therapy once a week (along with other doctors). He is able to sit up on his own now, although he is not rolling or tolerating tummy time. I believe he will continue to catch up relatively quickly, and I try to focus on how far he has come. Some days there is great frustration (when he won't eat, and seeing his physical delays) and I still mourn a normal babyhood for him.

Merit is feeling better and adjusting well. Once he got over his ear infections and we developed more of a routine, he went right back to his normal sweet self. He brings us so much joy. He is a great big brother to Lee. Lee smiles whenever he sees Merit and laughs the most at Merit. Merit loves to help me unpack and prep medical supplies. We are sure that Merit is a great motivation for Lee to get moving too.

You can continue to pray specifically for:
+Health over our household - a sickness for Lee could cause major setbacks, and obviously the rest of us have enough on our plates!
+Lee's continued healing and progress: intestines absorbing nutrients, his liver recovering from the IVs, interest and tolerance of eating orally, progress in physical therapy - catching up to his age group, release of anxiety
+Strength, energy, perseverance, endurance, joy, grace, wisdom (you name it) for Josh and I - as parents, caregivers, and a couple. Our days are exhausting physically, mentally, and emotionally. It is easy for me to feel frustrated or overwhelmed on tough days.

Thank you! We appreciate you all more than we can ever express!