Yay, I'm 95 weeks old today!
Masinja had a pretty eventful week this week. On Halloween T.M. had his promotion ceremony and Masinja got to help me pin on T.M.'s new rank. Masinja got to see his Uncle Jeremy and his girlfriend Carmen again too because they came to visit and to celebrate T.M.'s promotion to Major. Masinja didn't really pay attention during most of the ceremony though because he was more interested in exploring the room that the ceremony took place in. He kept me quite busy to say the least!! From the comments that were made by those who attended the ceremony, Masinja pretty much stole the show as usual :O) He also got to meet one of T.M.'s old bosses who flew in to officiate the ceremony. I think she was more excited to see Masinja than T.M. and I :O)
T.M. and I, along with Jeremy and Carmen, took Masinja to the park for what will probably be the last time this year. Jeremy was kind enough to video tape it for us so everyone could see how much Masinja enjoys sliding down the slide and swinging on the swings.
On another note, we found out this week that Masinja was denied the opportunity to have an off base PCM. Basically, the reasoning behind the denial was that he was receiving adequate care on base. Due to this, he definitely will not be getting the Synagis shot this year. We are still pursuing other options but for the time being our hands are tied. Hopefully, in the near future we will be able to permanently move him to an off base doctor. We will keep you posted.
That's all for now.
Peace,
T.M.M.
Monday, November 10, 2008
Sunday, October 26, 2008
Weekly Update -- 20 - 26 October 2008
Yay, I'm 94 weeks old today!
Well, still no real resolution on the synagis shot. Now I find out that the decision for Masinja not to get the shot lies at a different base. The program manager here submits his info to a "high-cost drug" officer, and that person, who doesn't know him from Adam, makes the call on his getting the shot or not. Again, the magic "criteria" is adhered to, and he's declined. I'm still working on getting an answer from the patient advocate on moving him to an off base doc. The patient advocate told me it wouldn't matter if Masinja went off base, it would still need to be approved by Tricare. Bottomline: Masinja's health is not going to be dictated by a beaurocacry.
So, let's do some basic math: 4.5 month NICU stay = $1M+ VS. series of synagis shots = $6K to $10K... so much for preventive medicine.
I'll let everyone know when I get him assigned to his new doc. It won't be anyone military ever again.
On a happier note, we took Masinja to the Fall Festival at church. He got to wear his Halloween costume, and be a big scary giraffe! He hung out with his new friend at church, who was a dragon.
pic
That's all for now.
Peace,
T.M.
Well, still no real resolution on the synagis shot. Now I find out that the decision for Masinja not to get the shot lies at a different base. The program manager here submits his info to a "high-cost drug" officer, and that person, who doesn't know him from Adam, makes the call on his getting the shot or not. Again, the magic "criteria" is adhered to, and he's declined. I'm still working on getting an answer from the patient advocate on moving him to an off base doc. The patient advocate told me it wouldn't matter if Masinja went off base, it would still need to be approved by Tricare. Bottomline: Masinja's health is not going to be dictated by a beaurocacry.
So, let's do some basic math: 4.5 month NICU stay = $1M+ VS. series of synagis shots = $6K to $10K... so much for preventive medicine.
I'll let everyone know when I get him assigned to his new doc. It won't be anyone military ever again.
On a happier note, we took Masinja to the Fall Festival at church. He got to wear his Halloween costume, and be a big scary giraffe! He hung out with his new friend at church, who was a dragon.
pic
That's all for now.
Peace,
T.M.
Weekly Update -- 13 - 19 October 2008
Yay, I'm 93 weeks old today!
Masinja had his second ECI session this week. His teacher was pleased with the progress that he made in the week since she last saw him. His vocabulary has increased a bit and he is now saying about a dozen words or so. In addition to Mama, Daddy, doggie, boogie, hockey and bake-a-ba, Masinja is now saying ball, block, huggie, kitty, and blue. It has taken us quite a while but we finally figured out that bake-a-ba actually means peek-a-boo :O)
Masinja had PT this week and his physical therapist decided that he is ready to be discharged. We go back next month for her to administer the Peabody test once more so that we can see how much progress he has made since January.
We found out this week that Masinja will not be getting the synagis shot again this year. This is a shot that protects against RSV. After much wrangling with his primary care manager (PCM); I went to the patient advocate to get the situation resolved. I spoke with the synagis program manager from the clinic and the patient advocate, and still didn't get a good answer, other than Masinja didn't meet the manufacturer's "criteria". I put in a letter to get his PCM changed to a civilian doctor off base, so we'll see where this takes us.
This is a video of Masinja being his goofy self.
That's all for now.
Peace,
T.M.
Masinja had his second ECI session this week. His teacher was pleased with the progress that he made in the week since she last saw him. His vocabulary has increased a bit and he is now saying about a dozen words or so. In addition to Mama, Daddy, doggie, boogie, hockey and bake-a-ba, Masinja is now saying ball, block, huggie, kitty, and blue. It has taken us quite a while but we finally figured out that bake-a-ba actually means peek-a-boo :O)
Masinja had PT this week and his physical therapist decided that he is ready to be discharged. We go back next month for her to administer the Peabody test once more so that we can see how much progress he has made since January.
We found out this week that Masinja will not be getting the synagis shot again this year. This is a shot that protects against RSV. After much wrangling with his primary care manager (PCM); I went to the patient advocate to get the situation resolved. I spoke with the synagis program manager from the clinic and the patient advocate, and still didn't get a good answer, other than Masinja didn't meet the manufacturer's "criteria". I put in a letter to get his PCM changed to a civilian doctor off base, so we'll see where this takes us.
This is a video of Masinja being his goofy self.
That's all for now.
Peace,
T.M.
Weekly Update -- 6 - 12 October 2008
Yay, I'm 92 weeks old today!
Masinja had his first ECI (Early Childhood Intervention) session this week. It went pretty well. His teacher gave us a few goals to work with to help Masinja start using his words more often. Right now we are focusing on getting him to indicate when he wants more of something. We started by working with one of his favorite toys, a toy I'm sure everyone remembers playing with as a child. It's a peg that has 5 rings of varying sizes on it. Basically we had Masinja take the rings off and then gave them back to him one at a time to put back on the peg. My job was to be in control of the pieces, mainly so Masinja wouldn't throw them across the room :O) Once Masinja had put a ring on the peg, I would ask him "want more?" His teacher said to keep it to one or two word questions and commands because it's easier for him to comprehend right now. We also have to work with him at meal times to get him to say more. His taacher will be back next week to see how much progress we have made and to add to the goals.
Masinja also had his second OT appointment this week. His therapist gave us a few tools to work with to get Masinja to eat and drink more efficiently. She gave us something called a Nuk brush to help him learn to chew better. She also gave us another tool to use as well to encourage proper chewing. Masinja doesn't seem to be too thrilled with either one at the moment but we have a few weeks to work with him. He prefers to keep everything in the middle of his mouth and use his tongue to smush it against the roof of his mouth :O) His therapist suggested using beef jerky since it is a bit tougher and it has a strong taste. We haven't ventured there yet but I am certainly curious to see how he does with it! We were also given a neat cup that has a small section cut out on the back part of the cup to allow Masinja to drink without smushing his nose. He loves the cup. He likes to make slirping noises when he takes a sip and then he giggles :O) We certainly have a lot of things to work on but we have a month in which to do it before he has to go back again.
That's all for now.
Peace,
T.M.M.
Masinja had his first ECI (Early Childhood Intervention) session this week. It went pretty well. His teacher gave us a few goals to work with to help Masinja start using his words more often. Right now we are focusing on getting him to indicate when he wants more of something. We started by working with one of his favorite toys, a toy I'm sure everyone remembers playing with as a child. It's a peg that has 5 rings of varying sizes on it. Basically we had Masinja take the rings off and then gave them back to him one at a time to put back on the peg. My job was to be in control of the pieces, mainly so Masinja wouldn't throw them across the room :O) Once Masinja had put a ring on the peg, I would ask him "want more?" His teacher said to keep it to one or two word questions and commands because it's easier for him to comprehend right now. We also have to work with him at meal times to get him to say more. His taacher will be back next week to see how much progress we have made and to add to the goals.
Masinja also had his second OT appointment this week. His therapist gave us a few tools to work with to get Masinja to eat and drink more efficiently. She gave us something called a Nuk brush to help him learn to chew better. She also gave us another tool to use as well to encourage proper chewing. Masinja doesn't seem to be too thrilled with either one at the moment but we have a few weeks to work with him. He prefers to keep everything in the middle of his mouth and use his tongue to smush it against the roof of his mouth :O) His therapist suggested using beef jerky since it is a bit tougher and it has a strong taste. We haven't ventured there yet but I am certainly curious to see how he does with it! We were also given a neat cup that has a small section cut out on the back part of the cup to allow Masinja to drink without smushing his nose. He loves the cup. He likes to make slirping noises when he takes a sip and then he giggles :O) We certainly have a lot of things to work on but we have a month in which to do it before he has to go back again.
That's all for now.
Peace,
T.M.M.
Sunday, October 5, 2008
Weekly Update -- 29 September - 5 October 2008
Yay, I'm 91 weeks old today!
We got the results of Masinja's ECI Evaluation this week. He does qualify for services for fine motor skills and communication. At this point, he is considered developmentally delayed. His teacher will be coming to the house to work with us 12 times within the next 6 months. Once we reach the 6-month mark, Masinja will be reevaluated and his goals will be adjusted.
Masinja got his first haircut this weekend. He was so good. He sat still for the most part, at least until the hair stylist tried to use her clippers to trim above his ears and along the back of his neck. He did not like those clippers one bit!
Haircut pic
Jammin with Daddy Video
That's all for now.
Peace,
T.M.M.
We got the results of Masinja's ECI Evaluation this week. He does qualify for services for fine motor skills and communication. At this point, he is considered developmentally delayed. His teacher will be coming to the house to work with us 12 times within the next 6 months. Once we reach the 6-month mark, Masinja will be reevaluated and his goals will be adjusted.
Masinja got his first haircut this weekend. He was so good. He sat still for the most part, at least until the hair stylist tried to use her clippers to trim above his ears and along the back of his neck. He did not like those clippers one bit!
Haircut pic
Jammin with Daddy Video
That's all for now.
Peace,
T.M.M.
Weekly Update -- 22 - 28 September 2008
Yay, I'm 90 weeks old today!
Masinja's glasses came in this week. His first pair were just basic plastic frames. This time around we bought wire frames that are super flexible. He isn't really impressed with them but he'll get used to them with time. The opthamologist said to put them on him in the morning and if he is still fighting them after about 10-15 minutes to take them off and try again the next day. So far the longest he has worn them is about 15 minutes!
Masinja has also officially started the "terrible twos." We have been taking him to the playground just about every day. We have to walk up a hill to get to the playground and he absolutely loves to walk. He has started to like swinging now but sliding down the slide is still his favorite. Each time we walk back to the car and get ready to put him in his car seat, he throws a temper tantrum :O) He screeches and arches his back, because he doesn't want to stop walking.
Glasses Pic
Crib Feet pic
That's all for now.
Peace,
T.M.M.
Masinja's glasses came in this week. His first pair were just basic plastic frames. This time around we bought wire frames that are super flexible. He isn't really impressed with them but he'll get used to them with time. The opthamologist said to put them on him in the morning and if he is still fighting them after about 10-15 minutes to take them off and try again the next day. So far the longest he has worn them is about 15 minutes!
Masinja has also officially started the "terrible twos." We have been taking him to the playground just about every day. We have to walk up a hill to get to the playground and he absolutely loves to walk. He has started to like swinging now but sliding down the slide is still his favorite. Each time we walk back to the car and get ready to put him in his car seat, he throws a temper tantrum :O) He screeches and arches his back, because he doesn't want to stop walking.
Glasses Pic
Crib Feet pic
That's all for now.
Peace,
T.M.M.
Weekly Update -- 15 - 21 September 2008
Yay, I'm 89 weeks old today!
Masinja had a pretty busy week. Monday he went back to the opthamologist. His lazy eye is acting up so he needs to wear glasses again. His far sightedness has actually improved since April though, so that's positive. His glasses should be in sometime next week so we will post some pics soon.
On Tuesday Masinja had his Early Childhood Intervention Evaluation. It went pretty well. He did a few things for the evaluators that he doesn't normally do for T.M. and I but that's typical. He is always doing things for his physical therapist that he doesn't do for us at home :O) We won't get the results until 1 October but we are pretty sure that he is going to qualify for services in the areas of fine motor skills and communication.
On Friday Masinja had PT. He showed off for his therapist as usual by walking all over the place and standing up without assistance numerous times. The one thing he is still having trouble with is crawling up and down stairs. He would rather walk which is not developmentally appropriate for his age. His therapist would really like to get him to crawl on his knees to go up the stairs and he prefers to crawl by placing his feet on the steps instead. Our biggest obstacle though is getting him to crawl down the stairs. He doesn't understand the concept that he is supposed to go backwards and would rather go head first! Since he is doing so well with walking and standing though, he is now only going to PT once a month.
We decided to post the other half of the bathtime video this week!
AfterBath time!
That's all for now.
Peace,
T.M.M.
Masinja had a pretty busy week. Monday he went back to the opthamologist. His lazy eye is acting up so he needs to wear glasses again. His far sightedness has actually improved since April though, so that's positive. His glasses should be in sometime next week so we will post some pics soon.
On Tuesday Masinja had his Early Childhood Intervention Evaluation. It went pretty well. He did a few things for the evaluators that he doesn't normally do for T.M. and I but that's typical. He is always doing things for his physical therapist that he doesn't do for us at home :O) We won't get the results until 1 October but we are pretty sure that he is going to qualify for services in the areas of fine motor skills and communication.
On Friday Masinja had PT. He showed off for his therapist as usual by walking all over the place and standing up without assistance numerous times. The one thing he is still having trouble with is crawling up and down stairs. He would rather walk which is not developmentally appropriate for his age. His therapist would really like to get him to crawl on his knees to go up the stairs and he prefers to crawl by placing his feet on the steps instead. Our biggest obstacle though is getting him to crawl down the stairs. He doesn't understand the concept that he is supposed to go backwards and would rather go head first! Since he is doing so well with walking and standing though, he is now only going to PT once a month.
We decided to post the other half of the bathtime video this week!
AfterBath time!
That's all for now.
Peace,
T.M.M.
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