Wow. This is one of my longest gaps in updating. Things were good with Eli and horrible with Ben. My focus and energy had dramatically shifted and I simply didn't have the time or the energy to get to updating.
Ben has been a disaster. He's been struggling in school alot as well as his struggles at home. His teacher is struggling to keep him involved in the classroom and on task with his work. He has been beyond hyper and stimming or sound asleep on the floor. We can't seem to get alot of in between time. He has also been struggling alot with physical boundaries and has had to be frequently separated from multiple kids in his class. We are trying to get in touch with his doctor to figure out what needs to be changed or adjusted with his meds or his behavior plan. Ben had a new in home respite worker start yesterday and they seem to be doing well together. He joins Ben after school and helps him with his school work and reading. They play for a bit, work thru dinner, and then have some more reading time before bed. On the weekends they will go on some outings in the community.
Eli had some decent weeks. We had been able to come off of his full time O2, only using it for all naps and nights. He has learned how to walk well with his walker and is able to move thru the house with it with help. He's also doing well walking with only holding onto 1 adult hand. This is a huge improvement over where we were. He has learned another new sign, "help" and has been using it very often. On Sunday we took Eli out to church and then out to a store, and then 1 more store later in the evening. By that evening his sugars were horrible, and come bed time he was struggling with his O2. We are on his 3rd day of trying to re-coop from going out. We have a call into his Geneticist trying to figure out what we need to do differently. It's not fair to Eli to never be able to leave the house. We are hoping he can help figure out a better plan.
Today was Ariana's hearing and speech evaluation. We have had constant concerns about how hard she is for us and others to understand. Her teacher has voiced concerns about understanding her in the classroom as well. She failed the OEM on the left side, but over-all she passed all of her hearing tests. Then we moved onto speech. They agreed that she has no problems with language, vocabulary, and her understanding of what we say. However she has a moderate to severe Articulation - Phonology Disorder. Ari ranked as a 2 yr old, and she is 5 yrs old. She has recommended aggressive speech therapy for a minimum of 45 minutes a week. The speech pathologist is sending all of her paperwork to the school district and she will be put on the waiting list for speech therapy in the hospital as well. We are still waiting on her OT evaluation.
We are working our way thru training another nurse. Today is his first day and he is doing well so far. Eli's next surgery is fast approaching and I'm so not ready to do this again. We haven't even gotten his blood sugars or weight re-stabilized and we are getting ready to head into another major surgery on March 6th.
Gotta run and help get Eli to bed!
I will update more in the next few days with pics!