February 2009
I can't really believe that I am the mother of an 18 year old ...ohh my gosh..Andrew turned 18 on February 2nd...he had a great celebration with family and friends...he was surprised by many things, one being a party, that his Noni had for him!!! We saw the Ophthalmologist this month;Avery was declared legally blind;with right sided visual field loss,he has hemianopsia...we will schedule an appointment with the ONLY visual fields specialist ....which is at the Perkins school for the blind,that will take place in several months. Avery saw the orthopedic doctor today for the first time to address his upper extremities and the change of tone he has had.....continued ROM...Range of Motion,is to be done daily. He mentioned different treatments available as Avery gets older/bigger and as his tone changes. I asked about his lower extremities and he recommended Avery see one of his fellow colleagues
on our next visit to see him. After the orthopedic doctor we saw OT...Occupational Therapy,as recommended by Avery's neurologist,just to see if she had any further recommendations for Avery's at home therapist. During the OT visit resting hand splint were made to help with Avery's fisted hands, a sensory diet to address his sensory regulation challenges was recommended and thought to be much needed because of Avery's lack of self sensory regulation. On many levels we have already started doing these things,with deep pressure and music /movement while doing stretches,ROM ...ect ...ect
Avery will go back to the OT in 4-6 weeks and we connect with Avery's home therapist. It is thought teaching him self regulation is a top priority at this point, it will be hard for him to be able to do ANY other tasks(stretching,tummy time, soothing ones self...) if he can't self regulate.....
Avery with his N/G tube....he had it from Dec -March! Of course not the same one...the tube frequently came out...as a matter of fact!!!
January 2009
A new year ..... 2008 is gone ... many may be really happy about that, but I have to say that had we not had 2008 I would not have my youngest littlest miracle. Yes we have had many challenges, but we have meet a lot of people on this journey and maybe God has allowed us to experience this to bring others closer to him, and we respond to our life might impact how others respond to theres! The VNA comes out once a week to monitor Avery's growth. Avery saw GI & Neurology this month. The neurologist went over Avery's MRI and other tests from his inpatient visit. He discussed what areas in the brain had been effected/damaged and how that plays a part in his continued feeding/growing/development... etc...etc..he also said that he believed a permanent feeding tube was the next step to be taken with Avery. He apologized to me immensely for the response and for some of the treatment we received while inpatient the last month ...It was also recommended that Avery be evaluated by the feeding team at Children's. Their recommendations consisted of doing oral motor stimulation with Avery and to start to go back to thin liquid when he takes a bottle opposed to the thicken liquids we started in November. The feeding team also agreed that a feeding tube was the appropriate next step; considering that Avery's ability to suck sufficiently to be ale to get the amount of nutrients needed is NOT enough, they also said that working on oral motor stuff should be easier when he has the tube out of his nose. Perkins therapist/teacher has started coming out...she is a great addition to our team that is working with Avery. She is fun and Avery has responded positivity o many things she has introduced to him. She brought out a “little room”...which is a sensory room,designed for kids with vision and developmental impairments, it is meant to bring this big world of our to a smaller level for them, so things aren't always so overwhelming!
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