We have been busy! Kate's volleyball and the kids' school schedule and homework would keep any family busy. Adding in Liz's appointments and many sleepless nights has made me exhausted and I just haven't had the time or motivation to blog.
Jackson and Kate are doing very well! Jack is making new friends at school and soaking in learning. He was pretty bored in the first weeks of school, but now that his class has been divided into reading groups based on the student's reading level, he is happy to be challenged more.
Kate is happy and my only worry for her is that she is too tired from having a lot on her plate. It is good for her to be busy though and for her to have her own "thing" to keep her distracted and motivated. Volleyball takes up two hours a night after school and middle school homework is intense, so she is falling into bed each night. She loves the sport and has committed to playing Club ball again, so we are hanging on for the ride of another season.
Elizabeth has been struggling. Her Gtube site (called a stoma) has not healed as well as it should. She's been dealing with pain and bleeding along with granulomas. Rather than having to go into the doctor's office each week, I now have been given the supplies to treat her granulomas at home. She's started back on Prilosec to help with the inflammation that is going on around the lining of her stomach and the balloon of the Gtube.
She had a reaction to the internal stitches used and she has had horrible muscle pain. Normally, a tube is placed more mid-line... picture someone with a six-pack. There is a divot down the center of their torso where there is no muscle. This is where tubes are placed. Because of all of Liz's surgeries, her surgeon had to place her tube to the side, which meant he had to cut through muscle. Painful now, but slowly healing.
Last week she started retching more often, having pain, and she had two days of dizziness and feeling faint. A series of xrays of Wednesday confirmed that she was impacted with stool again, and that was contributing to her symptoms (impaction contributes to dehydration). She went through a clean out at home Sunday and Monday, which has been horrible. Usually she doesn't have as difficult a time as she's had this week and it has been awful to watch and help her through. Our goal is to keep her from having to be hospitalized this week. On top of the impaction and clean out, she is on day 10 of a nasty cold/viral thing and has felt pretty sick with cough, congestion and fatigue. We are praying it does not turn into a sinus infection which would be the worst thing that could happen for her right now.
Next Monday, she will begin another clean out at home and then on Tuesday, we'll head to CHLA for her to be admitted for the week for manometry studies.
She could definitely use prayer.
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| This is a move Jackson calls the "X-ray" : ) |
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| Kate had a visit to the doctor for a physical. She grew nine and three-quarter inches in just two years! She is strong, healthy and going to be TALL! |
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| Tired eyes but big smiles for us both. |
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| Liz's surgeon. When you pray for her during her surgeries, this is the man you are holding in prayer as he holds her life in his hands. |
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| Liz has missed the last eight days of school : ( Here she is on a healthy day giving herself meds through her tube while she does homework. |
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| This touched Liz and she shared it with me. How amazing is she? |
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