Abraham's life from NICU to now
Saturday, December 27, 2014
Christmas Letter 2014
In case you have not noticed we have not sent out Christmas cards yet and it's already December 27. I just could not decide on a picture. I thought about one taken in September but I prefer a recent one of the boys because they have grown so much. Since our schedules are so busy we just have not taken time to take the picture. We might send out New Year's card. Here is our year. The two major words that come to mind to describe our year are change and BUSY. Glenn retired after 20 years in the Navy in October. He started working at Boeing in July. Boeing is about an hour away but he is part of a car pool so this saves some time. He enjoys gardening and built more raised beds for our garden. He also got his Ham radio license. He is still learning about the Ham radio. I am busy managing all of Abe's appointments and advocating for him to receive the services he needs to maximize his potential. I also attends a women's Bible study at church but rarely get the homework done. Abraham got a power wheelchair in June, had surgery in August, selective dorsal rhizotomy. The surgery requires a lot of physical therapy. The therapy schedule was five days a week and currently is three times a week. He has made progress however still requires Bacolofen for dystonia. He started kindergarten in September but misses a lot due to his outpatient therapy schedule. He might require surgery on his hips too because they are out of socket. Hip problems in children with CP is common. He is still recovering from the SDR surgery so we opted to have the x-rays repeated in 6 months then decide if the surgery would be beneficial or necessary. The SDR should have helped loosen his muscles to prevent the hip from pulling out of socket but unfortunately the damage has already been done. When he is a teenager and young adult he might have pain and osteoarthritis in his hips. He seems to enjoy school but on occasion does not want to go to school. He currently is not receiving ABA therapy or respite care. I am working on getting ABA therapy for him again. The respite care was only for active duty military families. However he did qualify for a personal care provider. We met the new care provider on Monday. It will be different than respite care but still someone to help care for him. This will allow both kids to get the attention they need. Luke has grown a lot and went from barely crawling to running, jumping and climbing. He talks and signs a lot. He likes to eat fruits and vegetables. He loves dogs and airplanes.
Friday, December 5, 2014
Apologize letter
Dr. Sir at Kersey Mobility,
I heard you come in and complain to the quite couple, one in a power wheel chair and his wife. I stopped chasing my 16 month toddler around the show room vans with nifty ramps that he enjoys running up and down on to move my stroller. The stroller was blocking seats since it next to my disabled 5 year old that was quietly watching elevator videos in his power wheelchair. I said nothing to you just moved my stroller so if you wanted a comfortable seat you had 4 to choose from. I was not sitting down for any extended period of time any ways. You still sat in the less comfortable chair. My toddler lost interest in the demo vans and ramps and found his brother's power wheelchair buttons, the horn and the power button. I repeatedly told him no that's your brother's chair we don't play with it. I pulled the safety brake on the chair so it would not move and to prevent any injury to anyone. I picked my toddler up and he became to scream in a very high pitch scream. I get it no one wants to hear a kid scream but your response "Oh please" and the tone used and the eye rolling just drew my last straw. You have no idea what my kids and myself had already encountered today, an hour commute one way, an hour long PT session followed by an hour long ST session. Yeah no fun for a healthy, full of energy 16 month old boy. I let him run up and down the stairs at the therapy center plus I gave him snacks and lunch. The sweet boy was sleeping soundly when we arrived to have the power wheelchair lift fixed. I tried my best to not wake him up when I transferred him into the stroller. It was successful until he heard phone ringing and people talking. This was a few hours before you arrived. This was our 3rd time there since it broke in October and our 5th time since August. The mobility place is not a fun place to entertain kids but I tried, letting him burn off energy prior to arrival, snacks, lunch, toys, books and hiding from him on the other side of the van which made him giggle. I tried to nurse him too but he is easily distracted. The screaming was probably your last straw too. You probably have as much if not more stress caring for a disabled spouse and I do caring for a disabled 5 year old and a toddler. It's not easy caring for a disabled person 24/7 young or old. When you said "oh please" and rolled your eyes I commented back "he's only 1 years old" and "he already sat thru 2 appointments". You told me "enough" but I was not done so I continued to comment "I bet every single adult in here has screamed and thrown a fit at one point in time or another" "yeah but that was a long time ago" you added. I added "how it's not easy to entertain children here and since it's raining there is not much I can do". I said nothing more but offered to go outside if it was not raining and that there is not much I can do he wants to play with the buttons on the power wheelchair. You started cussing at me in front of my boys. I told my children that we would wait outside and risk ruining our expensive power wheel as long as no one is smoking outside. You got up and went outside. The office staff let us go into an office. I put my toddler in my Tula in an effort to keep him from running around and screaming. He was tired and over stimulated by this point. I am sorry I kept explaining. You were probably there today because the device you use to transport your disabled wife was not working probably.Although the staff is nice and they have pretty Christmas decorations up neither one of us were there because it's fun. If you had said something like "poor kid must be tired" "he is probably bored" "is he hungry, ect" then momma bear might not have came out. I did not use profane language but just wanted you get a small glimpse why my 16 month old was upset. He wanted to play with power wheelchair. Even before he started screaming you seemed angry and stressed. The device for your wife probably was broken since she was not with you. It might have been the only break you have had all week from caring for her. Again I apologize my toddler started screaming. I should add to those reading this Luke did not scream for an extended period of time, just a quick screaming session while saying "no, no". If they had weekend hours I would have my husband bring the chair and the van in without my kids but unfortunately they are only opened Monday-Friday normal business hours. It's only 10 minutes from where Abe has PT, OT and ST so although not super convenient to bring both boys plus Abe misses school, it is convenient that we are already in the area. Although you don't have any children yourself please remember you were once a kid yourself and your probably would not have enjoyed someone telling you no to playing with the electronics on a power wheelchair. I hope you got the device on your vehicle fixed so you can transport your wife. I also commend you for sticking by her side even with a disability. I have no idea the extent of your wife's disability but given the vehicle you brought in and because a place that manages accessibly lifts for wheelchairs I can imagine she has extensive disabilities. That's it for now. You will probably never see me again and won't have access to my blog but I felt in my heart I needed to get this out. My next blog post will be about barriers to care. Yes having dual insurance is a barrier to accessing ABA therapy. I will post this something this week.
I heard you come in and complain to the quite couple, one in a power wheel chair and his wife. I stopped chasing my 16 month toddler around the show room vans with nifty ramps that he enjoys running up and down on to move my stroller. The stroller was blocking seats since it next to my disabled 5 year old that was quietly watching elevator videos in his power wheelchair. I said nothing to you just moved my stroller so if you wanted a comfortable seat you had 4 to choose from. I was not sitting down for any extended period of time any ways. You still sat in the less comfortable chair. My toddler lost interest in the demo vans and ramps and found his brother's power wheelchair buttons, the horn and the power button. I repeatedly told him no that's your brother's chair we don't play with it. I pulled the safety brake on the chair so it would not move and to prevent any injury to anyone. I picked my toddler up and he became to scream in a very high pitch scream. I get it no one wants to hear a kid scream but your response "Oh please" and the tone used and the eye rolling just drew my last straw. You have no idea what my kids and myself had already encountered today, an hour commute one way, an hour long PT session followed by an hour long ST session. Yeah no fun for a healthy, full of energy 16 month old boy. I let him run up and down the stairs at the therapy center plus I gave him snacks and lunch. The sweet boy was sleeping soundly when we arrived to have the power wheelchair lift fixed. I tried my best to not wake him up when I transferred him into the stroller. It was successful until he heard phone ringing and people talking. This was a few hours before you arrived. This was our 3rd time there since it broke in October and our 5th time since August. The mobility place is not a fun place to entertain kids but I tried, letting him burn off energy prior to arrival, snacks, lunch, toys, books and hiding from him on the other side of the van which made him giggle. I tried to nurse him too but he is easily distracted. The screaming was probably your last straw too. You probably have as much if not more stress caring for a disabled spouse and I do caring for a disabled 5 year old and a toddler. It's not easy caring for a disabled person 24/7 young or old. When you said "oh please" and rolled your eyes I commented back "he's only 1 years old" and "he already sat thru 2 appointments". You told me "enough" but I was not done so I continued to comment "I bet every single adult in here has screamed and thrown a fit at one point in time or another" "yeah but that was a long time ago" you added. I added "how it's not easy to entertain children here and since it's raining there is not much I can do". I said nothing more but offered to go outside if it was not raining and that there is not much I can do he wants to play with the buttons on the power wheelchair. You started cussing at me in front of my boys. I told my children that we would wait outside and risk ruining our expensive power wheel as long as no one is smoking outside. You got up and went outside. The office staff let us go into an office. I put my toddler in my Tula in an effort to keep him from running around and screaming. He was tired and over stimulated by this point. I am sorry I kept explaining. You were probably there today because the device you use to transport your disabled wife was not working probably.Although the staff is nice and they have pretty Christmas decorations up neither one of us were there because it's fun. If you had said something like "poor kid must be tired" "he is probably bored" "is he hungry, ect" then momma bear might not have came out. I did not use profane language but just wanted you get a small glimpse why my 16 month old was upset. He wanted to play with power wheelchair. Even before he started screaming you seemed angry and stressed. The device for your wife probably was broken since she was not with you. It might have been the only break you have had all week from caring for her. Again I apologize my toddler started screaming. I should add to those reading this Luke did not scream for an extended period of time, just a quick screaming session while saying "no, no". If they had weekend hours I would have my husband bring the chair and the van in without my kids but unfortunately they are only opened Monday-Friday normal business hours. It's only 10 minutes from where Abe has PT, OT and ST so although not super convenient to bring both boys plus Abe misses school, it is convenient that we are already in the area. Although you don't have any children yourself please remember you were once a kid yourself and your probably would not have enjoyed someone telling you no to playing with the electronics on a power wheelchair. I hope you got the device on your vehicle fixed so you can transport your wife. I also commend you for sticking by her side even with a disability. I have no idea the extent of your wife's disability but given the vehicle you brought in and because a place that manages accessibly lifts for wheelchairs I can imagine she has extensive disabilities. That's it for now. You will probably never see me again and won't have access to my blog but I felt in my heart I needed to get this out. My next blog post will be about barriers to care. Yes having dual insurance is a barrier to accessing ABA therapy. I will post this something this week.
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