This week has been a busy week of appointments. Monday Oliver went to see his PM and R doc, (Physical Med and Rehab doc). She was happy with how Oliver is now bringing his hands together. This is very hard for somebody who cannot see and is missing the part of the brain that brings everything to the center. Yay Oli! We are proud too=) He was having a good day and was holding head up well, she was pleased. His legs are stiff, which we have known. His x-rays looked great and we now have his baseline to compare to in the following years. The x-ray tech said, "Can't he walk?" No and most likely he will not. "Oh that is so sad!!" She said. No actually it is not sad, Oliver is happy, it is okay!! You would think she would be used to kids not walking working at Gillette! Dr. Q is recomending that Oliver is also followed by an Ortho doc. Right now Oliver is great, but as he starts to use his legs more he could develop more problems. Better to know an Ortho doctor before you really need one. Also, we will be getting fitted for a special needs car seat tomorrow and will be evaluated by a speech therapist tomorrow. Within the next 6 months Oliver will be fitted for AFO's. They are braces that will go over the lower part of his legs. He needs a therapy chair, and most likely will soon need a stander. A contraption that helps him learn to bear weight. She also noticed when Oliver stands he points his toes and curls them under. Not a big problem, just more to unlearn. Keep in mind these bits of equipment do not produce miracles, just gives Oliver the best chance. Today I was stretching Oliver on the floor and for some reason started saying "WoooooooW" in a really annoying and silly way. Oliver loved it and actually started yelling back at me. The four of us were laughing so hard! As soon as we turned the camera on he stopped.
We made the final wheel chair order and when our lovely insurance covers it we will go to Gillette to have them make it special to fit Oli perfectly. Speaking of insurance, MA contacted us and said once again they were dropping us because I have a job. I am still far under the hours/pay for them to drop us. We are appealing it of course. I actually went to their office to speak/give them a piece of my mind. We could not even see our worker, I paged her and spoke to her on a phone. That is what everybody there has to do, wait in line to talk to somebody on the phone. Nice system. She then asked, "Is your son even disabled?" You can only imagine my response. I will let you use your imagination. Remember they get copies of all of the medical reports. Cross your fingers and say a prayer. Just when we need five pieces of equipment we hold our breath that the system won't let us down. So that is our quick update. We will soon add pictures. Adina turns 3 on the 4th and is having her family Birthday Party on the 11th. Let me know if you will be around, there will be pizza and ice cream cake of course!
Wednesday, September 30, 2009
Wednesday, September 16, 2009
John's Art
I was looking at some work that John had to do for one of his classes, Gospel and the Global Media. He had to do a drawing or something that represented him and put it on his class blog. Well, I love it and thought you should all see it as well. I will also put what he wrote about it. Enjoy!
I used my illustration to set my own table. There are four people in my family and each of us is represented in this photo which is laid out on our kitchen table--the place we share meals as a family and representative of sharing our lives and faith with friends, family, and neighbors.
Items of note:
At the bottom of the photo, my wife Taryn's stethoscope shows her nursing care and love for people, and also the IPod with headphones shows how she enjoys running and being outside.
My daugter Adina is almost 3 and loves Dora the Explorer--if you don't have kids, Dora is the American Idol of toddlers. She also has a stethoscope from her "doctor" kit because she loves to take care of people and is like her mom.
Then, you see a feeding tube and stuffed animal. This represents my son Oliver, who is 1 1/2 and has a feeding tube in his stomach to get most of his nutrition/medicine. He has severe developmental and physical disabilities from birth, but he has taught me and my family so much about love and overcoming obstacles. He may never walk or talk, but he communicates by smiling and laughing--and he loves to bring that stuffed animal to his mouth which always brings a smile to my face.
I am represented by my well-worn Twin's cap which shows my love of sports, as well as the Bible demonstrating my journey at seminary, but also our family's united faith. Each of our items is clustered together--family and togetherness are essential to our lives. Each day, Taryn and I watch Dora with Adina and feed or do therapy with Oliver and we love being outside.
On top of the Bible, I borrowed some of Adina's blocks to build a partial wall. There are walls in each of our lives, but as long as we leave room to come in and out, we are constantly interacting and sharing with our neighbors and don't let the walls hold us back. We are living in a world which has walls built by the media and different perceptions that influence who we are--through cartoons, sports teams, the music we listen to, the version of the Bible we read, and the reaction people have to seeing my son, but through it all, love unites each characteristic.
I used my illustration to set my own table. There are four people in my family and each of us is represented in this photo which is laid out on our kitchen table--the place we share meals as a family and representative of sharing our lives and faith with friends, family, and neighbors.
Items of note:
At the bottom of the photo, my wife Taryn's stethoscope shows her nursing care and love for people, and also the IPod with headphones shows how she enjoys running and being outside.
My daugter Adina is almost 3 and loves Dora the Explorer--if you don't have kids, Dora is the American Idol of toddlers. She also has a stethoscope from her "doctor" kit because she loves to take care of people and is like her mom.
Then, you see a feeding tube and stuffed animal. This represents my son Oliver, who is 1 1/2 and has a feeding tube in his stomach to get most of his nutrition/medicine. He has severe developmental and physical disabilities from birth, but he has taught me and my family so much about love and overcoming obstacles. He may never walk or talk, but he communicates by smiling and laughing--and he loves to bring that stuffed animal to his mouth which always brings a smile to my face.
I am represented by my well-worn Twin's cap which shows my love of sports, as well as the Bible demonstrating my journey at seminary, but also our family's united faith. Each of our items is clustered together--family and togetherness are essential to our lives. Each day, Taryn and I watch Dora with Adina and feed or do therapy with Oliver and we love being outside.
On top of the Bible, I borrowed some of Adina's blocks to build a partial wall. There are walls in each of our lives, but as long as we leave room to come in and out, we are constantly interacting and sharing with our neighbors and don't let the walls hold us back. We are living in a world which has walls built by the media and different perceptions that influence who we are--through cartoons, sports teams, the music we listen to, the version of the Bible we read, and the reaction people have to seeing my son, but through it all, love unites each characteristic.
Saturday, September 5, 2009
Day of F's!!
First things first... I finally got a job!! It was not something that I perhaps first thought I would be doing, but it sure is funny how things just happen to fall into place. I have been worried all summer about finding a job and about when I do, who will watch Oliver. It has been a source of MAJOR anxiety for me. Finally I just threw my hands up and said it will all fall into place. A few days later I got a call about a job with a pediatric home health company. When I went in to have my TB test they asked how much experience I had with special needs children. Well of course little Oli came up and the nurse asked me how many nursing hours he received. Nursing hours, what do you mean? We had never been told that he would qualify for this, only that Oliver was not yet old enough for a personal care assistant. The nurse set up an assessment of Oliver, came to the house, and recomended to the state that he gets 48 hours of private nursing hours! (Cross your fingers that the state agrees, we all know my past frustrations with issues like this). Not only that, but I could get paid 20 of those hours!! So I got a job and somebody that could spend one on one time with Oliver and know what to do if and when he has his next seizure, starts to choke or aspirate, do the feeding tube and meds, and on and on!!! Like I said, it fell into place!! I will keep you updated on the progress of that. He has his wheelchair eval in a few weeks.
We took the kids to the State Fair and Adina loved it, Oliver, not so much. I joked with John that it was our day of F's. (Sounds bad huh?) Adina has been saving coins to bring to Feed My Starving Children (Great Organization.) She went in and handed the woman the coins and said, "So where are them kids I'm gonna feed?" She was pretty proud about it. Next we went to the Fair and had some fun! Adina went down the slide with me, on the way down she was so scared she had a big fluff! We ate a lot of food and all of this caused a lot of fatigue, and a few more fluffs! It was a great family day! So there is our day of F's!!
We have been noticing lately that Oliver is getting stared at a lot more. Some people are so rude about it. We understand that it is human nature to be curious and look, we all do it. I usually don't mind. Then there are times that people look disgusted. One woman at the fair came and stood right in front of the stroller and looked down at Oliver with a gaze I could not even explain. Adina even noticed it and looked up at me like, what's with her? I went and stood in between her and my children. John was really upset by this and I was as well. What do you do? There are ignorant people out there. We have been told by other parents that this and the comments would come sooner or later.
Anyway, enjoy the pictures!! Adina has a birthday coming up soon. She has almost invited everybody we have recently seen, including many friends, random kids on the playground, grocery story, and the maintanence man! We don't even have the party planned yet! She continuously amazes us with Oliver. She always thinks about him. At the fair he got scared with the loud sounds. They sit next to each other in the stroller. She said. "Mama, we gotta get outta here fast, little Oliver does not like this!!" She put her arm around him and rubbed is head until he stopped crying.
Adina and her second cousin Abby.
Adina likes to get in bed with Oliver to give him kisses.
Adina tickling Oliver.
Adina and Papa H. playing Puff the Magic Dragon. Adina's favorite song. When Oliver is upset she will sing You are My Sunshine to him. Not sure it helps =)
Adina carries the coins into Feed My Starving Children. They were heavy!
Adina giving the coins and telling the lady, "This is to feed them kids."
Mommy and Adina going down the big slide at the State Fair. We got a little air on the bumps!
Mommy and Adina on the Bumble Bee ride.
The first solo ride!! She loved it!
This would be the fatigue part of going to the fair.
Cozy in bed again.
Last day at the beach for the year.
Close up #1.
Close up #2.
Cousin Charlie on his 3rd Birthday! We had a great celebration!
We took the kids to the State Fair and Adina loved it, Oliver, not so much. I joked with John that it was our day of F's. (Sounds bad huh?) Adina has been saving coins to bring to Feed My Starving Children (Great Organization.) She went in and handed the woman the coins and said, "So where are them kids I'm gonna feed?" She was pretty proud about it. Next we went to the Fair and had some fun! Adina went down the slide with me, on the way down she was so scared she had a big fluff! We ate a lot of food and all of this caused a lot of fatigue, and a few more fluffs! It was a great family day! So there is our day of F's!!
We have been noticing lately that Oliver is getting stared at a lot more. Some people are so rude about it. We understand that it is human nature to be curious and look, we all do it. I usually don't mind. Then there are times that people look disgusted. One woman at the fair came and stood right in front of the stroller and looked down at Oliver with a gaze I could not even explain. Adina even noticed it and looked up at me like, what's with her? I went and stood in between her and my children. John was really upset by this and I was as well. What do you do? There are ignorant people out there. We have been told by other parents that this and the comments would come sooner or later.
Anyway, enjoy the pictures!! Adina has a birthday coming up soon. She has almost invited everybody we have recently seen, including many friends, random kids on the playground, grocery story, and the maintanence man! We don't even have the party planned yet! She continuously amazes us with Oliver. She always thinks about him. At the fair he got scared with the loud sounds. They sit next to each other in the stroller. She said. "Mama, we gotta get outta here fast, little Oliver does not like this!!" She put her arm around him and rubbed is head until he stopped crying.
Adina and her second cousin Abby.
Adina likes to get in bed with Oliver to give him kisses.
Adina tickling Oliver.
Adina and Papa H. playing Puff the Magic Dragon. Adina's favorite song. When Oliver is upset she will sing You are My Sunshine to him. Not sure it helps =)
Adina carries the coins into Feed My Starving Children. They were heavy!
Adina giving the coins and telling the lady, "This is to feed them kids."
Mommy and Adina going down the big slide at the State Fair. We got a little air on the bumps!
Mommy and Adina on the Bumble Bee ride.
The first solo ride!! She loved it!
This would be the fatigue part of going to the fair.
Cozy in bed again.
Last day at the beach for the year.
Close up #1.
Close up #2.
Cousin Charlie on his 3rd Birthday! We had a great celebration!
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