International Kung Fu Corporation

Weekly Update -- 5 - 11 July 2010

2010-07-07T14:54:00.000-07:00

Yay, I'm 183 weeks old today!

Masinja had a pretty typical week. At Speech he once again practiced his pretend play skills with a tea party and baby dolls. He played with the Duplos with the Pooh, Piglet, Tigger, and Eeyore pieces again too. He also read Polar Bear, Polar Bear and Catch the Ball again. He really enjoys both books and has now memorized them. I didn't realize it but we had a copy of Brown Bear, Brown Bear at home and he has been reading that all week. Last but not least his therapist worked on having him identify boy or girl using cards and added the pronouns he or she.

During OT Masinja tolerated the trampoline better than he ever has. He rode the horsey swing and afterwards he spotted the basketball hoop so his therapist let him shoot baskets for a few minutes. He then climbed the ladder to go down the slide but instead of using turtles/frog bean bags his therapist let him roll the basketball down the slide before him. We then moved to the smaller room and he played with the activity center for a few minutes while standing on big wedge to work on his balance. For fine motor skills his therapist had him work with alligator clips or large clothes pins as well as spring loaded scissors.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 28 June - 4 July 2010

2010-07-07T12:07:00.002-07:00

Yay, I'm 182 weeks old today!!

Masinja had an eventful week. At Speech he practiced his pretend play skills again with a tea party and caring for baby dolls. He also played with blocks. Masinja -- read two books this week: Polar Bear, Polar Bear and Catch the ball both by Eric Carle. He really enjoyed Polar Bear, Polar Bear and has been quoting parts of it all week! Masinja's therapist tried something new. She used cards that had pictures on them and attempted to get Mason to use yes and no correctly by asking him if there was a particular object pictured on the card. After about a dozen tries he finally caught on!!

During OT Masinja once again practiced climbing the ladder and it was a little easier for him to do so. He was rewarded for all of his hard work by getting to go down the slide afterwards. He really enjoyed it because he get to let the bean bag turtles slide down before him. He also rode the horsey swing. His therapist has been swinging higher each week and he has been tolerating it quite well. Masinja used - scooter boards for the first time this week. His therapist had him lay on his tummy and pull himself across the floor with his hands. Her main objective is to try to improve his upper body strength in an attempt to help with his fine motor skills. She attempted to do a 6-month re-evaluation this week as well so she can assess what progress he has made. Masinja did well with stringing beads and unscrewing and screwing a tip back on. He's still struggling with scissors though and has regressed some with drawing horizontal lines; however, he now draws vertical lines very well. He wasn't able to stack very many blocks but I believe that was due to his distractibility.

Masinja had his 37th ECI session this week. His teacher and I discussed the use of the picture schedules as well as potty training. We also discussed various activities that I can do with him at home to help with the sensory processing issues such as finger painting with shaving cream and pudding as well as making homemade playdoe with cornstarch, water and food coloring. Lastly we discussed which type of scissors would be best for Masinja. His teacher was going to check with the OT on his team and have her take a few different pair to parent connections so he can practice.

Last but not least, Masinja went to Parent Connections this week. He did get to try several different kinds of scissors with the OT and it was decided that he works best with spring-loaded loop scissors. His OT have us a pair to practice with at home.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 21 - 27 June 2010

2010-07-07T12:07:00.001-07:00

Yay, I'm 181 weeks old today!!

Masinja had a pretty uneventful week. He went to Speech as usual and worked more on pretend play. He made a "cake" and we had a tea party as well. He also played with baby dolls, duplos,and read a few books. He worked on identifying emotions and imitation. While working on those skills his therapist discovered that Masinja has difficulty using yes and no correctly. It has now become one of his goals.

Masinja didn't have OT this week because his therapist took the week off.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 14 - 20 June 2010

2010-07-07T12:06:00.001-07:00

Yay, I'm 180 weeks old today!!

Masinja had an interesting week. He didn't have speech because he had appointment at the Monroe Meyer Institute for his autism screening.

The visit at Monroe Meyer was 4 hours long. It consisted of a meeting with the psychologist, a meeting with the speech therapist, a play session, and then a final meeting to review their findings. We spent an hour with the psychologist and discussed some of Masinja's behaviors as well as his medical history. We spent about half an hour with the speech therapist and discussed Masinja's communication skills as well as his development. During the play session I observed while T.M. went into the play room with Masinja. Two women attempted various pretend play activities with him including playing with cars, dolls, bubbles, blocks, a telephone and having a pretend birthday party. We had a short break before meeting with the psychologist once again to review the findings. Based on the observations of everyone involved in the screening Masinja, was diagnosed with PDD-NOS which stands for Pervasive Developmental Disorder - Not Otherwise Specified. Basically, in order to qualify for a diagnosis of Autism a child needs to meet 3 different criteria. Masinja only meets 2 out of the 3 criteria, hence the diagnosis of PDD-NOS. It is sometimes referred to as atypical autism.

During OT this week Masinja worked on more sensory stuff. Once again his therapist put him on the trampoline. He still wasn't impressed with it and pretty much refused to stand so his therapist just let him sit while she bounced. He also rode horsey swing again and loved it. The last sensory skill he worked on involved the playground equipment. He climbed a ladder and slid down a slide. It was a bit difficult for him to climb the ladder since he had never done it before. He loved going down the slide though. There wasn't much time left when he finished all of the sensory stuff so his therapist had him work with easy putty as a means of strengthening his hands. All in all it was a productive session.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 7 - 13 June 2010

2010-07-07T12:05:00.000-07:00

Yay, I'm 179 weeks old today!

Masinja and I got back to our normal routine this week.

At Speech he worked more on pretend play. We had a tea party and he fed a few baby dolls and brushed their hair and rocked them to sleep. He also played with some mega blocks that had pieces with Winnie the Pooh, Piglet, Tigger and Eeyore on them. He hasn't really shown much interest in anything other than Sesame Street characters but he certainly was interested in the Pooh characters. Masinja's therapist tried to get him to listen to a story and then retell it but it didn't go over very well. He listened just fine but he was not interested one iota in the retelling part!

At OT Masinja's therapist started working on more of the sensory issues. She got on a trampoline with him and held his hands while she jumped. He wasn't impressed to say the least. As soon as she started bouncing he said, "Do you want to get down?"He tried to get off immediately. He also rode on a horsey swing and crawled through a tunnel several times. He did really well with both. Masinjha worked on fine motor skills using small pop beads and easy putty. He got a special treat at the end of the therapy session when his therapist gave him some chocolate pudding. She wanted to see how well he could use a spoon. I have to admit I think that was the highlight of his day! He definitely has a sweet tooth :o)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 17 May - 6 June 2010

2010-07-07T11:42:00.001-07:00

Yay, I'm 178 weeks old today!

Masinja and I had a very eventful 3 weeks. We made the trip to NY so we could be there when Masinja's grandpa had surgery. Masinja got to see all of his great aunts and uncles and even some of his second cousins. We were originally only going to stay in NY for a little over a week but we extended our trip. We went to go visit Masinja's grandpa in the hospital as often as we could and we also visited with Uncle Vin several times. The first week we were there we spent a lot of time with Masinja's Uncle Sean, Aunt Joyce, and Uncle Gary and Patty. Gary and Patty had to go back to Ohio though so we spent even more quality time with Sean and Joyce when we weren't visiting with other family members and friends and making multiple trips to Friendly's :o) Gary and Patty came back to NY for Memorial Day weekend and brought Masinja's cousins Taylor and Jordan with them. We had a great weekend and Masinja had a blast playing with his aunts and uncles and cousins. The plane ride home wasn't a pleasant experience though. It rained most of the trip and there was quite a bit of turbulence. Considering Masinja's issues with gravitational insecurity the turbulence was a BIG problem. He cried for most of the first flight and I was seriously concerned that I wouldn't be able to get him back on a plane for the second one. He was a trooper though and I'm sure it helped that the second plane was a big jet. We made it back home safe and sound. We'll go back to our normal routine next week.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 10 - 16 May 2010

2010-05-13T17:27:00.001-07:00

Yay, I'm 175 weeks old today!

Masinja had an interesting week. I would like to report on Speech and OT but due to the events of the week and the fact that I have fallen behind on updating the blog, I honestly don't remember what activities he did this week. About the only thing I can report on is that Masinja had his 36th ECI session. His teacher, services coordinator and I discussed the differences between an IFSP and an IEP because Masinja will be transitioning to an IEP in August. We also discussed preschool placement. Masinja will start prechool in September and will go 3 days a week. He will be going in the morning from 9 to 11:30. We have the option of having him ride the bus but T.M. and I decided to drive him ourselves. He will also be eating lunch at home instead of at school because he still has feeding issues.

Masinja got to fly on an airplane for the first time this week. My father was diagnosed with pancreatic cancer in April and started having complications this week. We flew to NY bright and early Saturday morning to spend time with him and to be there when he has surgery next week. We were planning on going to NY for a visit next month but the circumstances speeded things up a bit! We'll be heading back to Nebraska next Sunday.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 3 - 9 May 2010

2010-05-13T17:22:00.000-07:00

Yay, I'm 174 weeks old today!

Masinja had his first appointment with his new OT this week. His original OT went on maternity leave so he was transferred to another clinic for the summer. The new clinic is set up a bit differently and has some pretty neat equipment that the clinic at the hospital doesn't have. One of the pieces of equipment is an Activity Center. It's located in the treatment room and is made up of a variety of fine motor activities. Masinja was fascinated with it. His new OT worked on some of the sensory issues that were identified by the sensory profile that we filled out a few months ago. She started by putting him on a balance ball which he was not impressed with to say the least! He kept saying, "Do you want to get down!" He started crying after a few minutes and broke my heart because he was looking at me as if to say, "Why are you letting her do this Mommy?" He most definitely has gravitational insecurity!! The OT also introduced Masinja to shaving cream. She put a few dabs of it on the mirror and then had him rub it around. He wasn't very impressed with that either and kept saying, "Wipe it off!" Once he calmed down Masinja worked on stringing large and small beads and played with Mr. Potato Head. Neither T.M. nor I had even thought about getting Masinja a Mr. Potato Head but he loved it so much that we will be going to the store this weekend to get him one!

During Speech we had another tea party with cupcakes. While Masinja enjoys making the cupcakes he still hasn't gotten the hang of the tea party concept. He tends to get distracted and would rather play with the spoons or take the top off the sugar bowl. Masinja also worked with the boy and girl identification cards. He was 100% correct in his identification for the first time!!

I met with Mason's ECI team this week to go over the results of the school psychologist and vision consultants' evaluations. The school psychologist was not able to attend the meeting but Masinja's teacher explained the results to me. The psychologist does not feel that Masinja has any form of autism, but rather that all of the behaviors in question can be attributed to the damage caused by his brain bleed. She said that based on the copies of his medical records that I provided, the area of the brain that was affected would have an impact on language development, attention span and time management.

The vision consultant confirmed that Masinja has depth perception issues. She explained that it was due to his right eye being lazy. She also said that at this time he doesn't meet the criteria to be classified as visually impaired. I was shocked when she mentioned that because I wasn't even aware that they were considering that classification. I was under the impression that the reason for the evaluation was to get her input on strategies to use with Masinja. It was decided at the end of the meeting to add the vision consultant to Masinaja's team and for him to be re-evaluated by her when he has his 3 year evaluation next fall. I guess we'll see how things go with that evaluation.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 26 April - 2 May 2010

2010-04-28T19:28:00.001-07:00

Yay, I'm 173 weeks old today!

Masinja had a pretty busy week. During Speech he continued to experiment with pretend play. We had another tea party and we also go to make and eat pretend cupcakes. He seemed to really enjoy making the cupcakes. He got to put the paper cups in the pan, followed by the cupcake, and then he got to put the frosting on and decorate them with icing as well. They have the coolest toys at Children's Hospital! The only bad thing was he kept asking for chocolate afterwards :o)

Masinja continued to work on stringing shapes during OT. He seemed to do a much better job this week but it's most likely due to the fact that we were in a room with minimal distractions. He also copied pictures again this week but he used magnetic shapes instead of foam shapes. He also worked with Duplos. He seems to be getting much better at putting them together and pulling them apart although he still struggles on occasion.

I attended two Parent Connections trainings this week. The first was entitled Handwriting Without Tears. The OT that is on Masinja's team was the presenter. Handwriting Without Tears is an actual writing curriculum that is used as an alternative to traditional handwriting curricula for children with special needs. It incorporates a lot of really cute activities and materials to help make handwriting a pleasant experience for both the child and the parents. I am definitely going to be asking more about this curriculum once Masinja enters school. The second training that I attended was on Separation Anxiety. I went more for myself than for Masinja! He doesn't seem to be having any issues at the moment but I wanted to be prepared for the fall when he will begin preschool. I'm pretty confident that he will be just find but I can't say the same for myself :o)

Masinja had his 35th ECI session this week as well. His teacher brought the vision consultant along to do an evaluation. We will be meeting again next week to go over the results as well as to discuss the results of the school pyschologist's evaluation that was conducted a few weeks ago.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 19 - 25 April 2010

2010-04-28T18:54:00.000-07:00

Yay, I'm 172 weeks old today!

Masinja didn't have Speech or OT this week due to a quarterly meeting. They try to rotate the meeting to a different day of the week each quarter so that the same patients aren't always missing therapy and this quarter the meeting was on a Tuesday. I did take him to the doctor this week though and it is now confirmed that Masinja has seasonal allergies. He is now on Zyrtec. Hopefully he will get some relief soon!!

Masinja had his 34th ECI session this week. We discussed the use of the picture schedule and how well it is working. We also decided to include additional pictures since the original ones have been working so well. Masinja's teacher also suggested doing more gross motor imitation with him at various times of the day such as between activities, as part of play, or as part of mealtime. In addition to this, she suggested alternating active play with quiet time. She feels this will help Masinja increase his attention span.

We participated in the March of Dimes walk again this year. We weren't able to participate last year because of severe thunderstorms. Thankfully this year it wasn't raining but it was cloudy, windy and really COLD!! Our friends Nick and Holly and their two little girls, and Patricia and her husband and their two little boys did the walk with us. We finished the entire 3 miles in just over an hour because it was so cold. It meant a lot to T.M. and I to be able to do the walk this year though because it is our way of honoring Maddie. The walk is held during the same week as the anniversary of her passing so that makes it even more meaningful for us. Of course we also do the walk in honor of Masinja and how far he has come!!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 12 - 18 April 2010

2010-04-28T18:53:00.002-07:00

Yay, I'm 171 weeks old today!

Masinja had a good time at OT and Speech this week. During OT he got to sit on the edge of the slide again because all of the rooms were occupied. He worked on stringing shapes instead of beads. The shapes had two holes and typically would require putting the string through both holes, but the main objective was for Masinja to practice stringing something other than a bead or pasta. He struggled quite a bit with it because he was more interested in trying to collect the shapes. There were all different sorts, (i.e. airplanes, apples, cars, etc.), and he just wanted to hold as many as he could! He also had a hard time concentrating because there was a maintenance man changing light bulbs. After he reached his frustration level, his therapist moved on to having him copy pictures using foam shapes. He seemed to really enjoy it and was able to complete the task without too much trouble. When he was done, he got to eat some chocolate pudding which is one of his favorite treats. His therapist is still trying to work on getting him to eat with a spoon independently. He's still having a lot of difficulty grasping the spoon correctly though and ended up wearing more than he ate :o)

During Speech Masinja continued to experiment with pretend play. His therapist gave him a baby doll and showed him how to feed her, rock her and brush her hair. I don't think he knew what to make of it and he didn't seem all that interested. T.M. was relieved when he heard that :o) He doesn't want his little boy playing with dolls! Masinja also worked on putting the boy and girl cards into piles. This week his therapist had him using the word "is" to describe what the boys and girls were doing. The goal is to broaden his vocabulary in an effort to help him form different sentences. He tends to be very rigid in his sentence structure and only uses sentences that he has heard repeatedly.

Masinja also had his 33rd ECI session this week. We put the picture schedule together and talked about how best to utilize it. We also talked about the progress he has made with the adaptable spoon as well as some of the other skills that he has been working on during OT.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 5 - 11 April 2010

2010-04-28T18:53:00.001-07:00

Yay, I'm 170 weeks old today!

Masinja's week was pretty typical. During OT he worked on copying patterns with Duplos again. He also spent quite a bit of time working on drawing vertical lines. He got pretty frustrated when his therapist wouldn't just let him scribble!

Masinja continued to experiment with pretend play during Speech. His therapist had a tea set and we all had a tea party. Masinja go to practice pouring the tea and cream, as well as scooping the sugar and stirring his tea. He was fascinated with the spoon and stirring! He even offered to stir his therapist's and my tea :o)

I attended another Parent Connections training this week entitled Parent Child Communication. The presentation was very informative and dealt not only with toddlers but also with teenagers. It certainly made me reflect on my communication skills! Hopefully I will actually remember some of the information and be able to use it as Masinja gets older. Some of the techniques might even come in handy in dealing with T.M. :o)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 29 March - 4 April 2010

2010-04-28T18:52:00.000-07:00

Yay, I'm 169 weeks old today!

Masinja had a pretty good week. At OT we had to sit on the slide in the play area because there weren't any rooms left. His therapist had him work with some easy pegs this week instead of the blocks or Duplos. He kept building on top of her structure instead of copying it like he was supposed to :o) She also had him work on drawing vertical lines by having him draw from one dot to another. He did really well considering!

During Speech Masinja read a book with his therapist. He has gotten much better as far as his attention span is concerned. He also worked on separating the boy and girl cards into piles again. His therapist wants to work with Masinja on pretend play so she introduced a house play set. She gave Masinja two men, a table and chairs, two babies and a double high chair, plates, an oven, cupcakes and pizza. She helped Masinja set everything up and pretend to cook the pizza and cupcakes and have the men eat it. He did a really great job considering he hasn't really been interested in pretend play up until now. He was mostly interested in playing with the boy and girl twin babies and putting them in and taking them out of their double high chair. It was great to see him pretending!! His lack of interest in this type of play has made it very hard to play with him. Hopefully he will continue to engage in this type of play.

Masinja had his 32nd ECI Session this week. His teacher brought the adaptable spoon that the OT sent to help Masinja become more proficient at feeding himself. It is a regular spoon that has a hinge built in and if he tries to turn it upside down it swivels back to the upright position. Hopefully this will help him understand how to hold the spoon correctly. Masinja's is going to schedule a visit for the vision consultant. The remainder of the session was spent discussing ways to help Masinja communicate better with the use of a picture schedule. Masinja's teacher gave us pictures depicting various routines throughout the day. Hopefully this will hep him to process things better as well as be more flexible.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 22 - 28 March 2010

2010-04-28T18:51:00.002-07:00

Yay, I'm 168 weeks old today!

Masinja had a pretty average week. At OT he did several different activities that centered on fine motor skills. Instead of stringing beads, this week he put them on dowels. His therapist made several patterns with the beads that Masinja had to copy. He struggled a bit at first because he just wanted to put as many beads on the dowel as he could, but after a few tries he got the hang of it. Masinja also had to copy patterns with the Duplos. His therapist made towers and he was supposed to make his look the same. He has been having a hard time with this for a few weeks now. He tends to do the exact opposite, i.e. if the order of the blocks in the tower is red, blue, green he tends to build his green, blue, red. Masinja also practiced drawing lines. He's gotten pretty good at horizontal lines but he just can't seem to figure out how to draw vertical ones. He got to finish up by eating some applesauce. He's been struggling with using a spoon but he's starting to get the hang of it!

During Speech Masinja worked with the boy and girl cards by separating them into piles. He stills get confused on a few of them but he's doing a pretty good job; I'd say about 85-90% correct. He also worked with the vocabulary cards and did more gross motor imitation. His therapist rewards him with bubbles and he gets the biggest kick out of them. Every time she blows a whole bunch he says, "Look at all these bubbles!!!" He then proceeds to watch each of them pop before he will do any more imitations :o)

I attended a Parent Connections training this week on Behavior Strategies. The school psychologist that evaluation Masinja a few weeks back was the presenter. She gave us a lot of good information about the correct way to discipline as well some strategies to correct behavior problems. It was a very good workshop and it certainly gave me a lot to think about!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 15 - 21 March 2010

2010-04-28T18:51:00.001-07:00

Yay, I'm 167 weeks old today!

Masinja didn't have Speech this week. His therapist's little ones were sick so she had to stay home with them. He did have OT though and it was interesting to say the least. His therapist had him take a break from beads and instead had him put washers onto dowels. She tried getting him to copy patterns by using big and little washers but Masinja was too distracted by the fact that the washers were shiny! She also tried working on horizontal and vertical lines again. They have a neat board with a black light behind it that you can draw on with special crayons. Masinja didn't really cooperate with that either though because he was too busy trying to switch colors constantly. I guess it's a good thing that he didn't have to go to Speech afterwards because he probably wouldn't have done very well!

Masinja had his 31st ECI session this week. His new OT and her student teacher came to observe Masinja eating lunch. She wanted to see how he grasps his utensils and give us some strategies on how to help him. He did a pretty good job with his fork although she did notice that he has a hard time seeing the food and often misses. She said it is most likely due to his vision. He didn't do very well with the spoon at all. He doesn't hold it correctly and every time she tried to correct his grasp he would change it right back as soon as she took her hand away! Masinja doesn't hold the spoon upright either but instead turns it upside down so obviously he winds up wearing most of his food. His OT is going to send an adaptable spoon with his teacher next week so we can give that a try.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 8 - 14 March 2010

2010-03-09T16:44:00.001-08:00

Yay, I'm 166 weeks old today!

Masinja had a pretty calm week again. He did very well in OT. He has made quite a bit of progress with stringing the noodles so his OT decided to kick it up a notch and move on to beads. It is a bit more challenging for him because the holes are smaller and he tends to cover them with his fingers while trying to hold the bead. He's still struggling with drawing vertical lines but he has pretty much mastered horizontal lines. He is doing much better with the Duplos now too and even managed to copy the patterns that the OT made with them without too much trouble. His OT was finally able to track down his Sensory Profile and clarified that he does have some tactile and auditory sensory problems. Not too sure yet how she is going to address those issues but I would imagine she will incorporate it into his therapy sessions.

Masinja did really well in Speech today too. He has made a great deal of progress with identifying boys and girls. In fact, we went to Target the other day so I could buy some more workout clothes. While I was trying some things on in the dressing room Masinja climbed up onto the bench and said clear as a bell, "Masinja is a boy." I couldn't wait to get to Speech this week to tell his therapist. She switched to a new deck of cards that has various occupations depicted and the "boys" and "girls" are actual people instead of cartoon characters. Masinja did a pretty good job of differentiating between boys and girls with the new deck of cards so his therapist decided to take him for a walk around the clinic and see how he did with real people. He was about 75% correct which is pretty good considering there weren't any boys. I think sometimes it throws him off if there isn't enough variety so he decides to make his own! He did really well with gross motor imitation and copying the structures his therapist built with the wooden blocks too. He has made a ton of progress and his Speech therapist can't wait for his 6-month review so she can determine just how much!

Masinja had his 30th ECI session which was also his 6-month review. He has made a lot of progress so we were able to remove some of his goals and add new ones. For the next 6 months we are basically going to focus on getting Masinja to feed himself with a fork and spoon and drink out of an open cup. He hasn't been able to use utensils independently because of his issues with grasp. We are also going to focus on helping Masinja learn to play with others as well as engage in pretend play. As far as language development is concerned the goal is to help Masinja become more proficient at verbally making his needs known. We discussed again that he will be starting preschool in August. The goal is for him to go at least 3 days a week. Once he starts preschool he will be transitioned from an IFSP to an IEP. The biggest difference is that with the IFSP his goals are set based on our concerns whereas the IEP goals will be set based on the concerns or recommendations of his teacher. We still have input with the IEP but not as much as we do with the IFSP. The last thing that we discussed was the possibility of adding the vision teacher to Masinja's team. Both his OT and his Speech therapist at Children's mentioned to me last week that in addition to PT, OT and Speech, the ECI program also employs a vision teacher. When I told them about his ophthalmology appointment a few weeks ago they both asked me if the vision teacher was on Masinja's team. In light of his "wobbly" vision Masinja's teacher, or primary provider, is going have the vision teacher come out and do an evaluation and see if she can give us some additional strategies to help him.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 1 - 7 March 2010

2010-03-09T16:43:00.001-08:00

Yay, I', 165 weeks old today!

Masinja had a pretty calm week for a change. About the only things to report on are OT and Speech. During OT he worked on stringing noodles once again. He still gets frustrated with it when the string doesn't go in on the first try but he seemed to have improved a bit since last week. He also worked with beads and dowels. Instead of using the Duplos, his therapist tried to get him to copy the pattern that she was making with the beads. Masinja didn't quite understand the concept at first but I think that was because he was too distracted by the beads. He kept trying to put his beads on the same dowel as the OT. After a few tries he finally understood what he was supposed to do although he still didn't quite get the pattern right. He kept doing the opposite. For example, if the OT put a red bead, blue bead and then purple bead on her dowel Masinja would put the purple bead first, then the blue bead, and lastly the red bead. He has been doing something similar with the wooden blocks that his Speech therapist uses. I guess he just sees things backwards. Masinja's OT also began working with him on undressing and dressing. He has quite a bit of difficulty with this task. He understands that his shirt needs to go over his head but he doesn't quite know what to do with his arms. When he tries to take his shirt off he winds up getting stuck! He doesn't really understand how to pull his pants on or off either. This is something that we are really going to have to work on at home. His OT still has not been able to track down the Sensory Profile. Hopefully next week she will have located it so we can address the sensory issues.

Speech was pretty uneventful. Masinja is still working on the same skills he has been working on for the past few months. While his vocabulary has grown quite a bit, he is still struggling with some basic concepts. We are still working on getting him to differentiate between boy and girl. This is important because the goal is for him to add more nouns, pronouns and verbs to his vocabulary so he can start to form his own sentences. Most of the sentences that he says now are just repetition of the things that we say to him on a daily basis. We are also continuing to work on gross motor imitation. His therapist decided that since he likes the vocabulary cards so much she would try to get him to imitate some of the actions depicted. He did fairly well on some of them. Imitation is extremely important for him not just for language development but also in terms of learning how to play.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 22 - 28 February 2010

2010-03-09T16:42:00.000-08:00

Yay, I'm 164 weeks old today!

Masinja had a pretty busy week. He had an Ophthalmology appointment on Monday. The good news is that his prescription hasn't changed. The bad news is that the doc said his vision is "wobbly." He didn't elaborate and I was a bit taken aback so I didn't really ask too many questions. He has to go back for another exam in June and have his eyes dilated which is a few months earlier than he would normally. We will be sure to ask lots of questions at that appointment!!

Masinja got to go to Parent's Day Out twice this week. T.M. had to go TDY to Hawaii and so I decided I could use a little extra "mommy" time. He really enjoys it though and he didn't even notice that I was gone! I guess separation anxiety isn't going to be a worry, at least not for Masinja. I on the other hand may need an intervention when it's time for him to start preschool!!

We got the results of Masinja's OT evaluation from last week. Right now he is functioning at a 15-month old level as far as his grasp is concerned and a 23-month old level as far as vision is concerned. His OT wasn't able to find his Sensory Profile so we are waiting to hear more on that. He will be going for OT once a week for about a year to work on various fine motor skills. This week he worked on stringing noodles. He got a bit frustrated with it because he just couldn't seem to get the string into the noodle. He tends to shut down when things are too hard for him and often yells. Typical 3-year old! His therapist also worked on trying to get him to draw horizontal and vertical lines. Masinja still has difficulty holding a crayon correctly and tends to just scribble all over the place. He seemed to really like the sound effects that his therapist made as she was trying to get him to draw the lines though so maybe that will motivate him. Lastly, she used Duplos and tried to get him to copy what she built with them. The Duplos are much harder for him to manipulate than the Mega Blocks that he has at home. He didn't do very well with this task but it wasn't a big surprise. His Speech therapist uses wooden blocks and has him copy what she builds. As I've mentioned before, Masinja has a really hard time with imitation and this task certainly falls into that category.

Last but not least, Masinja had his 29th ECI session this week. His teacher brought the school psychologist so she could do an evaluation. Based on what she saw and the information I gave her about Masinja's birth and subsequent medical history, the psychologist does not believe that he has autism. She said that most, if not all, of the "red flags" that have come up in the past few months could be explained by his grade IV brain bleed. I am going to get her copies of his cranial ultrasounds so she can determine which side the brain bleed occurred on and if it could indeed be the cause of the behaviors in question. We will certainly let you know what her conclusions are when we find out.

That's all for now.

Peace,
T.M.M.

Weekly Update - 15 - 21 February 2010

2010-03-09T16:40:00.002-08:00

Yay, I'm 163 weeks old today!

Masinja had an extremely eventful week! He had his first OT appointment on Tuesday. He saw a therapist who is very familiar with him. In fact, she was the therapist that he saw originally when he started having feeding issues. She did an evaluation to determine where he was developmentally and will give us the results next week. She had him try to do basic tasks such as putting a bead on a string, stacking blocks, drawing a line, cutting with scissors and putting small items into a container. We also discussed the Sensory Profile so she is going to take a look at it and give us some feedback on that next week as well.

Masinja did well in Speech again this week which was kind of surprising considering he went directly from his OT evaluation. We were afraid he would have some kind of melt down or something from being over-tired. He didn't miss a beat though. His therapist kicked it up a notch with the gross motor imitation by introducing a ball and trying to get Masinja to kick it. We have been working on this for a while now but all he seems to want to do is throw the ball. She also tried to get him to jump but he just couldn't quite grasp that concept. I'm sure these skills will come in time.

Masinja also had his 28th ECI session this week. There has been some turnover in the school system so some of the members of Masinja's ECI team have recently been changed. T.M. and I were able to meet the new Services Coordinator and OT. Both were very personable and we are especially looking forward to working with the OT. She seems to be more in tune with Masinja's needs and our concerns than his regular teacher. It seems like she is going to be a bit more hands on than the old OT as well.

Masinja's Aunt CC (Cindy) and Uncle Robert came for a visit this week. He hasn't seen them since July when we went to Shreveport for a visit. We all went to watch one of T.M.'s hockey games which is one of Masinja's favorite past times. We also went to the Train Museum but I think the highlight for everyone was ice skating. It was Masinja's first time as well as Cindy and Robert's. I can honestly say that a good time was had by all despite the fact that our legs were very tired afterwards! We had a great time spending time with the Funny Bunnies and I know they enjoyed spending time with Masinja as well.

Masinja Ice Skating

Aunt CC and Uncle Robert Ice Skating

That's all for now.

Peace,
T.M.M.

Weekly Update -- 8 - 14 February 2010

2010-03-09T16:40:00.001-08:00

Yay, I'm 162 weeks old today!

Masinja had a pretty busy week. Speech went well. His therapist has added a few more goals for him, one of which is to increase his attention span. She read him a very long Dr. Seuss book today, The Foot Book. Masinja actually sat still and paid attention for over ten minutes!! His therapist and I were very impressed. He is still struggling with imitation but he's getting better. He now puts his fingers in his mouth and touches his tongue when he is supposed to be sticking it out. This is a big improvement because before he would just look at his therapist with a blank stare. At least now he knows where his tongue is and that she is trying to get him to do something with it!

Masinja also had his 3-year checkup this week. He weighs 31.8 pounds and is 36 inches tall. T.M. and I mentioned the recent concerns about autism that were brought up by both his speech therapist and his ECI teacher. Masinja's doctor is going to put in a referral to have him evaluated by a local clinic that specializes in autistic disorders. We'll keep you posted on how things go.

Last, but not least, Masinja went for his first Parent's Day Out this week. It is part of the ECI program and Parent Connections. Basically, he gets to go and play for two and a half hours and I get some time for myself. T.M. and I were really concerned at first that Masinja would throw a fit or have separation anxiety but he didn't even notice I was gone! I was supposed to drop him off around 9:00 and pick him back up around 11:30 but I couldn't hold out that long. I went back and got him around 10:45 but we stayed a few minutes and chatted and played. It's a good thing he did so well because it will make transitioning to preschool that much easier. If only I had done as well as Masinja!!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 1 - 7 February 2010

2010-03-09T16:38:00.001-08:00

Yay, I'm 161 weeks old today!

Speech went well again this week. Masinja continues to make progress on a weekly basis. His therapist is looking forward to his 6-month review so she can measure just now much progress he has made. Masinja is still working on most of the same skills as he has not mastered them yet. Imitation is his biggest weakness. His therapist spends several minutes each week trying to work on gross motor imitation. He does really well with most of the actions but he still has a lot of difficulty with anything involving his mouth, i.e. sticking out his tongue, smiling really big, blowing kisses, etc. This is obviously a really important skill because eventually it will be necessary in order for Masinja to speak correctly. He has made a ton of progress in only a few months though so I'm sure the imitation will come with time.

Masinja got to play at Parent Connections again this week while I attended a training entitled Transitioning to Preschool. Even though I am in denial of the fact that my baby boy is growing up, he will be starting preschool in August. This training was definitely beneficial in preparing me for that eventuality. He can ride the bus but since the school that he will most likely go to is literally two minutes away I will most likely just drop him off and pick him up. Masinja will probably be attending preschool three days a week. He will be going for two and a half hours a day. Thank goodness it's only February so I still have several months to adjust to the idea!!

That's all for now.

Peace,
T.M.M.

Weekly Update - 25 -- 31 January 2010

2010-03-09T16:35:00.002-08:00

Yay, I'm 160 weeks old today!

Masinja had another eventful week. Speech went well again and he continues to make progress on a weekly basis. His therapist did mention something this week; however, that T.M. and I have been wondering about for a few months now. She brought up the possibility of autism or pervasive developmental disorder. Some of the behaviors that Masinja exhibits are questionable and she said that several of them could be explained by either of these disorders.

Masinja had his 27th ECI session this week. When I told his teacher about his quoting Sesame Street last week when we were playing with his letter puzzle, she said that she would like to have the school psychologist come out and do an observation. She is concerned because some of the things I have reported as well as some of the behaviors that she has observed are considered "red flags" for autism. I told her that his speech therapist had also mentioned autism or PDD in passing recently and that T.M. and I had been having some concerns. T.M. and I weren't too sure how to go about having Masinja evaluated but I guess we've gotten the ball rolling now. We are also going to mention it to his pediatrician when we go for his 3-year checkup next month.

On a not so pleasant note, Masinja had an accident this weekend. We were at T.M.'s hockey game and Masinja fell off of a chair and hit his head on the rim of the plexi glass enclosure. He had a huge goose egg and T.M. and I decided that it would be best to take him to the ER just to be on the safe side considering his history. We spent 2 hours in the ER and then we had to wake him up every 2 hours for the remainder of the night to check for signs of a concussion. It was a long night to say the least!!

Goose Egg

That's all for now.

Peace,
T.M.M.

Weekly Update -- 18 - 24 January 2010

2010-03-09T16:35:00.001-08:00

Yay, I'm 159 weeks old today!

Masinja had a pretty eventful week. Speech went fairly well again this week. His therapist is very pleased with the progress he has been making and is going to start introducing some new concepts soon. We finally got the results of the Sensory Profile that we filled out back in November too. Apparently after it was scored it got put back in his original file instead of being passed on to the occupational therapists. Masinja scored significantly so the next step is for him to have a formal OT evaluation. We will have to wait a few weeks for that though because they are short staffed right now.

Masinja celebrated his 3rd birthday this week. We were planning on having a skating party for him this past weekend but the rink required a minimum of 10 people to be in attendance. We would have had enough, but one of our so called "friends" decided that she and her husband and son wouldn't be able to make it. They had another birthday party to attend that weekend and she didn't want her son to miss his nap two days in a row. We have decided to just postpone until next month when Masinja's Aunt CC and Uncle Robert come for a visit. We just had a small family celebration here at the house. T.M. and I helped Masinja open his presents and then we all had some ice cream cake. It was more like ice cream cake soup because I took it out to thaw a bit too early but it was still yummy!

Ice Cream Cake pic

Eating Cake pic

Opening Presents pic 1

Opening Presents pic 2

Opening Presents pic 3

Opening Present pic 4

Opening Presents pic 5

I know Masinja might have a different opinion, but I think the best present he got on his birthday was not have to take phenobarbital anymore!! The weaning process went off without a hitch and we are praying that he remains seizure free from here on out.

Masinja had his 26th ECI session this week. His teacher is going to have the OT on his team come out for a joint visit to see if she can give us some strategies. Masinja is still having difficulty feeding himself with a utensils and he still has a fit when his fingers are dirty. His teacher suggested having him play with Play Doh to try to get him used to different textures and such. I guess it's a good thing that we gave him a huge Play Doh set for his birthday then huh? :o)

On a final note, I thought I'd give y'all a laugh as well as demonstrate why T.M. and I are convinced that Masinja does in fact have a photographic memory. Masinja and I were playing with his letter puzzle yesterday. He likes to go through the alphabet and say what each letter goes with, i.e. A goes with apple, B goes with basket, etc. When he got to the letter O he said, "O goes with octopus." He then proceeded to say, "I have an octopus stuck on my head. Hi, my name is Jake and I'm here to tell you about the word separate." This was a direct quote taken from an episode of Sesame Street that he hadn't seen in over 2 weeks. Needless to say, T.M. and I were both impressed!!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 11 - 17 January 2010

2010-03-09T16:34:00.001-08:00

Yay, I'm 158 weeks old today!

Masinja did well at Speech again this week. He has made a ton of progress with the boy/girl cards and differentiating between the two. He still gets stuck on a few, but it's completely understandable because even I would be hard pressed to identify a few of them as girls :o) He gave his therapist and I a good laugh though. He was about 85-90% successful in identifying boy/girl with the cards but when asked if his therapist and I were boys or girls he said we were both boys. Also, when we asked him if he was a boy or girl, he said girl!

Masinja got to play at Parent Connections again this week. I attended a training titled "The Power of Play." I was hoping it was going to give us some ideas of how to play with Masinja since T.M. and I have been having such a hard time. Masinja tends to be very rigid when it comes to his toys and how to play with them. The training was a waste of time though. The presenter basically emphasized how important play was to a child's development and outlined the different types of play. Being that I was an elementary school teacher for 9 plus years, I already knew all of that information. She also emphasized the importance of staying away from drill like activities. She said that play should not be centered around academic skills such as the alphabet, numbers, colors and shapes. When I told her that Masinja is obsessed with all of those things and asked her specifically for suggestions on how to get him to focus on other types of play she had no idea how to answer me! Oh well, T.M. I will just have to figure it out on our own I guess.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 4 - 10 January 2010

2010-03-09T16:33:00.001-08:00

Yay, I'm 157 weeks old today!

Masinja had a pretty productive week. He worked really hard at Speech and made a lot of progress. He did a little bit better identifying boys and girls. He has started to throw the boy/girl cards on the floor just like he does with the verb cards. It is pretty funny to watch because if they don't land exactly like he thinks they should he will go and adjust them!! He is still doing an excellent job with the verb cards. In fact his therapist had to move on to another box of cards. There are about 40 cards or so per box and she has introduced about 10 cards per week. Masinja has pretty much memorized all of the cards from the original box though. T.M. and I are seriously starting to wonder if Masinja has a photographic memory. He even did an awesome job with the blocks. This was the first week that he actually paid attention and copied a few of the towers that his therapist created. We were both very impressed!

Masinja was supposed to have his 26th ECI session on --- but it got cancelled due to inclement weather.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 28 December 2009 - 3 January 2010

2010-03-09T16:32:00.000-08:00

Yay, I'm 156 weeks old today!

Masinja had a pretty uneventful week. About the only thing to report on is Speech. He is still working on the vocabulary cards, but in addition to verbs, his therapist is trying to introduce pronouns. She is starting out slow by getting Masinja to identify boys and girls. So far he is having a hard time differentiating between the two. Another skill that his therapist is working on is imitation. Masinja has a hard time with this as well. His therapist has been working on gross motor imitation with him from the start but she has also incorporated the use of blocks. She uses two different color blocks and tries to get Masinja to build a tower just like hers. He struggles with this quite a bit but I think it's because he just wants to play with the blocks :o) Every time she builds her tower and asks him to make one just the same he either reaches over and grabs her blocks or tries to stack his blocks on top of hers! It will take some time, but I know he'll get the hang of it eventually. Thank goodness his therapist is very patient :o)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 21 - 27 December 2009

2010-03-09T16:31:00.000-08:00

Yay, I'm 155 weeks old today!

Masinja had his final appointment with the neurologist on Tuesday. Since he has been seizure free for over 2 years now we finally get to wean him off of the phenobarbital. It will take a little while as we are gradually decreasing the dosage amount week by week, but if everything goes well he should be phenobarbatol free on his birthday! The neurologist did caution us that he could possibly have a relapse. She said 60% of patients never have seizures recur and that if he falls into the 40% that do, it will most likely happen within the first 6 months. Please pray that he remains seizure free!!

Masinja seemed to enjoy his third Christmas. He had a little bit better understanding of presents this year. He knew that they were for him and that he was supposed to unwrap them. In fact, we had a hard time making him understand that he had to wait until Christmas morning to open them :o) We still had to help him unwrap his presents because he got preoccupied with the paper as he ripped it off, but that's par for the course. All in all he seemed to appreciate his loot.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 14 - 20 December 2009

2009-12-17T11:51:00.001-08:00

Yay, I'm 154 weeks old today!

Masinja had a quite an eventful week this week. His speech session went pretty well. He cooperated quite well with his therapist and she is very impressed with the progress he has made so far. One of the activities she does with him every week involves picture cards that represent verbs. She puts them into a pillow case and lets him pull them out. He cracks us up every week though because after he pulls out each card and she asks him what the person pictured is doing he always says, "crying." For some reason he seems to think everyone is always crying. After she tells him to try again, he tells her exactly what action is being portrayed. Next he will take all the cards and line them up on the floor. He insists that they be lined up just right; none of them can be touching! When it is time to pick up he has to tell us once again what action is being portrayed before his therapist can put the cards back in their box. He is very particular about the entire process :o) This week his therapist had to put even more cards in the pillow case because he wanted to do more.

Masinja has been having some difficulty with stuttering and I asked his therapist about it. She said this time of year it is normal for kids his age to stutter due to the holidays and all of the new vocabulary that they are learning. She said that we will monitor him and if he continues to stutter after the holidays, she will look into it.

Masinja got his second H1N1 shot this week. He handled it like a trooper. About the only thing he got upset about is that the nurse only gave him one sticker instead of two :o)

Masinja had his 25th ECI session this week. We further discussed ways to use the First/Then poster utilizing pictures of his toys as well pictures of daily activities. We also discussed making a Daily Schedule using the same pictures and switching things up a bit from day to day to help Masinja break out of his rigidness. Lastly, we discussed ways to get him to sit in his chair instead of standing directly in front of the tv. He starts out sitting in his chair but he inevitably winds up standing so close to the tv that I swear his nose it touching the screen!! His teacher suggested getting a throw rug and putting his chair on it and explaining to him that he has to sit there if he wants to watch tv. She also suggested turning the tv off any time he stands too close and telling him that the tv doesn't work if you stand too close. When I told T.M. about this suggestion he just laughed and said that knowing Masinja, he'll just walk up to the tv and push the power button to turn it back on :o)

Below is a video of Masinja eating chocolate. We wanted to share it with y'all because his pronunciation of chocolate is priceless :o) He says "crocket!"

Chocolate Video

That's all for now.

Peace,
T.M.M.

Weekly Update -- 7 - 13 December 2009

2009-12-17T11:49:00.002-08:00

Yay, I'm 153 weeks old today!

Masinja had quite an eventful week. T.M. had to go out of town and unfortunately while he was gone we had a pretty big winter storm. By the time the storm was over we had a total of 13 inches of snow on the ground! Masinja didn't quite understand what the snow was though. He kept saying, "It's raining!" I took him outside with me on Tuesday while I was shoveling and he fell down in the snow and the proceeded to follow me around saying, "Wet. Cold." We were going to go sleigh riding with his friend Clay but he just wasn't as impressed with the snow after he fell :o)

Masinja didn't end up going to speech this week because the roads were so bad. All of the schools were closed and even the base was closed. We did venture out to Target early on Tuesday just to pick up a few things in case the power went out. On Wednesday I had to shovel the driveway in sections because there was so much snow. When I shoveled the first part I left Masinja in the living room watching Sesame Street because it was way too cold to take him outside with me. I came in to check on him after about 5 minutes just to make sure he wasn't getting into any mischief. The picture below is what I found :o)

Surrounded by CDs pic

That's all for now.

Peace,
T.M.M.

Weekly Update -- 30 November - 6 December 2009

2009-12-17T11:49:00.001-08:00

Yay, I'm 152 weeks old today!

We drove the rest of the way back to Nebraska this Monday. Masinja really didn't seem to mind the drive at all. He slept for a good portion of it and played quietly with his link-a-doos for the rest of the time. T.M. and I were amazed and we're pretty certain that when we have another child he/she probably will be Masinja's polar opposite :o)

Masinja had speech on Tuesday and since T.M. was off for the day he got to go with us. I think it was quite enlightening for him! We tried to make an appointment for Masinja's formal occupational therapy evaluation but they are short staffed right now so we might have to wait a few weeks.

Masinja was supposed to have his 25th ECI session on Wednesday but we had to cancel because T.M. was sick. He was running a fever and we figured it would be best if we canceld so Masinja's teacher wouldn't get sick.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 23 - 29 November 2009

2009-12-17T11:48:00.000-08:00

Yay, I'm 151 weeks old today!

Masinja got to spend Thanksgiving with his Grandpa Murphy, Uncle Gary, cousins Taylor and Jordan, Uncle Sean, Aunt Joyce and Uncle Vin. He also got to visit with lots of friends and family that haven't seen him since he was about 6 months old. It was a very busy week but it was nice to get to spend the holiday with loved ones. Everyone was amazed with how big Masinja has gotten and everyone was very sad when we had to leave to head back to Ohio. We drove to Masinja's Uncle Gary's house on Saturday so we could rest up on Sunday before heading back to Nebraska on Monday. None of us were too psyched about that 14 hour drive :o( On a positive note, we were able to visit with one set of Masinja's Godparents while we were in Ohio. Tom, Leslie, Gabe and Patrick drove to Gary's house to see us and we all went to lunch. It was a short visit but it was well worth it!

Masinja & Grandpa Murphy

Masinja & Uncle Gary

Masinja & Uncle Sean

Masinja & Aunt Joyce

Masinja & Uncle Vin

Masinja & Tom, Leslie, Gabe & Patrick

That's all for now.

Peace,
T.M.M.

Weekly Update -- 16 - 22 November 2009

2009-12-17T11:47:00.000-08:00

Yay, I'm 150 weeks old today!

Masinja had a pretty busy week this week. We went to speech on Tuesday and he had a hard time staying on task. He had a few melt downs because he coulnd't do what he wanted when he wanted to! Definitely channeling the terrible twos :o) His therapist found out the resutls of the Sensory Profile today as well. He scored significantly on it so now he needs to have a formal Occupational Therapy evaluation. Once that is completed he will start OT.

Masinja had his 24th ECI session this week. We discussed Masinja's sensory processing issues. His teacher is going to try to get the results of the Sensory Profile and share it with the OT that is on his ECI team and try to coordinate services for him. Masinja started spinning in circles when she was trying to interact with him and I told her that he had been doing so repeatedly several times throughout the day. She said that this is also a sensory issue. We also discussed the fact that Masinja has issues with perseveration. Basically, he gets stuck on a specific activity or insists on doing things a certain way and won't deviate. His teacher is going contact the school psychologist and see if she can come out and observe Masinja and maybe give us some additional strategies to help him.

This Saturday we started our trip home to New York for Thanksgiving. We left bright and early and drove to Ohio to stay with Uncle Gary for a bit before finishing the last leg of our trip. Masinja was great for the entire 14 hour trip. I'm sure by the time we head back to Nebraska he will be sick and tired of the car!! I know T.M. and I will be.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 9 - 15 November 2009

2009-12-17T11:46:00.003-08:00

Yay, I'm 149 weeks old today!

Masinja had his 24th ECI session this week. We discussed ways to better help him transition from one activity to the next. Masinja's teacher is going to make a First/Then poster that we can use to motivate him to finish an activity before moving on to another one. T.M. and I are going to take pictures of all of Masinja's toys and his teacher will laminate them for use with the poster. We also discussed trying another strategy to help him make eye contact. His speech therapist at Children's has had success with using a physical prompt. Masinja's teacher suggested using a familiar object or making an "L" with my fingers and placing it next to my eye and saying "Look" to get Masinja's attention. Hopefully this will help because he just refuses to make eye contact.

We STILL don't have the results of the Sensory Profile. Masinja's speech therapist couldn't figure out what was taking so long so she went looking and found it in his file. Apparently the receptionist never gave it to the occupational therapists to be scored. Now that it is in the right hands we should know something next week for sure!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 2 - 8 November 2009

2009-12-17T11:46:00.001-08:00

Yay, I'm 148 weeks old today!

Masinja had his 23rd ECI session this week. We discussed the progress he has made with making eye contact and interacting while reading a book. We also discussed the possibility of Masinja starting pre-school in March. His teacher feels that pre-school would greatly benefit him by helping him develop his social skills, improve his attention span, and also help with his speech development. He would be placed in an integrated classroom where he can get the amount of redirection that he requires. I'm very thankful that March is a few months away because it will most likely take me that long to get used to the idea!! He would only go for 2.5 hours twice a week but I know I'll have a harder time adjusting than he will :o)

We haven't gotten the results of the Sensory Profile yet. Masinja's speech therapist said she would look into it this week since it usually only takes about a week to be scored. We'll let y'all know the results as soon as we do!

Masinja got to play in the leaves this week. I'll let the pictures below speak for themselves :o)

Leaves 1

Leaves 2

Leaves 3

Leaves 4

Leaves 5

That's all for now.

Peace,
T.M.M.

Weekly Update -- 26 October - 1 November 2009

2009-12-17T11:45:00.001-08:00

Yay, I'm 147 weeks old today!

Masinja's regular speech therapist came back from maternity leave this week. He was happy to see her and performed pretty well considering she had been gone for 6 weeks. I gave her the Sensory Profile to have scored and she said she should have the results next week.

Masinja got his first H1N1 vaccine this week. We had to get a prescription for him to get the shot instead of the nasal mist because he falls into the high risk category. We weighed the pros and cons for quite a while before deciding to get him the vaccine. For us, the alternative is worse than the risks involved with the vaccine. Masinja's immune system and lungs are still a bit immature and with his neurological problems we just didn't want to take a chance. So far he hasn't had any adverse reactions to the shot. He has to go back in 30 days to get a booster shot. He really didn't fuss too much when he got the shot and he got two stickers which was the highlight of his day :o)

That's all for now.

Peace,
T.M.M.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 19 - 25 October 2009

2009-12-17T11:44:00.000-08:00

Yay, I'm 146 weeks old today!

Masinja will be resuming regular speech appointments next week because the feeding specialist discharged him this week. She is pleased with the progress he has made in the last couple of weeks and feels that he no longer needs her services. In the few weeks that she has worked with him; however, she observed some behaviors that led her to believe he might have a sensory processing disorder. She gave us a Sensory Profile to fill out and return to be scored by Occupational Therapy. It will be interesting to see what the results are because after filling it out, T.M. and I are even more convinced that Masinja does in fact have sensory issues.

We took Masinja to Trick or Treat at the zoo this weekend. He didn't really understand the whole trick or treat concept but he certainly looked adorable in his costume :o)

Masinja Monkey

Happy Monkey

That's all for now.

Peace,
T.M.M.

Weekly Update -- 12 - 18 October 2009

2009-12-17T11:43:00.002-08:00

Yay, I', 145 weeks old today!

Masinja had a pretty uneventful week so we figured we'd just post a few pics for your enjoyment :o)

Sleeping Peacefully

Why'd you wake me up?

That's all for now.

Peace,
T.M.M.

Weekly Update -- 5 - 11 October 2009

2009-12-17T11:43:00.001-08:00

Yay, I'm 144 weeks old today!

Masinja had his 22nd ECI session this week. We discussed a different technique for reading books with him. Instead of having Masinja sit in our laps, which is what he prefers, his teacher suggested having him sit in front of us so he can interact more with the story. She would like us to have him point to and name items as a way to build his vocabulary and attention span. Masinja tends to rush through a book and often turns the pages before T.M. or I have even finished reading! Hopefully this technique will make reading books with him more enjoyable :o) We also discussed working on getting Masinja to make eye contact. It is very hard to give him directions when he looks everywhere else but at the person speaking to him! Lastly, we discussed strategies to help Masinja engage in both busy and quiet activities. His teacher suggested pairing a busy activity with a quiet activity as a way to help him focus more. I am eager to try this strategy because I am hoping it will make it easier to play with Masinja!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 28 September - 4 October 2009

2009-12-17T09:42:00.000-08:00

Yay, I'm 143 weeks old today!

Masinja had a pretty exciting time this week. He didn't have speech because the feeding specialist took a well deserved vacation but he did get to go to a wedding for the first time. Our friends Holly and Nick got married Friday night and Masinja had a blast. He was a dancing fool!! He was on the dance floor for almost the entire reception! He kept following all the little girls around trying to get them to dance with him :o) Unfortunately, we didn't get a picture of him dancing with any of them but we did get a picture of him dancing with his friend Bryce.

Masinja dancing with Bryce

That's all for now.

Peace,
T.M.M.

Weekly Update -- 21 - 27 September 2009

2009-12-17T09:41:00.000-08:00

Yay, I'm 142 weeks old today!

Masinja had his second session with the feeding therapist this week. He got to try peanut butter for the first time. We had been reluctant to give it to him for fear that he might have an allergic reaction. Just that weekend though T.M. and I had decided to request that the therapist try it with him. We figured it was the best setting for him to try it for the first time simply because if he did have an allergic reaction he was already in a hospital. When we got to speech this week I didn't even have to ask her to try peanut butter because she had already planned on it. Luckily Masinja didn't have an allergic reaction but watching him try it for the first time was interesting to say the least. The therapist put some peanut butter on a graham cracker and then gave it to Masinja. He turned the cracker around so he could eat the end that didn't have peanut butter on it! The therapist then put more peanut butter on the cracker and Masinja proceeded to try to eat around the peanut butter. Next, she put some on an apple slice. He pretty much wiped the peanut butter of with his finger and then kept saying, "on the plate." He was not impressed with how it felt on his fingers and insisted that we wipe it off :o) The therapist finally gave up and just put some on the back side of Masinja's front teeth. He didn't quite know what to make of it. I'm not sure if he just didn't like the taste or if it was the texture. I guess we'll just have to keep offering it to him and hope that eventually he likes it.

Masinja and I went to Parent Connections again this week. I attended a training session titled "It's Not What You Say But How You Say It." The session was desinged to help parents of special needs children communicate with the school system about their child's needs. I learned a lot of good communication skills that I'm sure will come in handy in the years to come. Masinja had a good time playing with Miss Jacqui again. She tried to get him to play with something besides the kitchen set and food but it didn't work very well :o) Maybe he's going to be a chef when he grows up??

That's all for now.

Peace,
T.M.M.

Weekly Update -- 14 - 20 September 2009

2009-12-17T09:40:00.001-08:00

Yay, I'm 141 weeks old today!

Masinja had his first session with the feeding specialist this week. It seemed to go pretty well but that's probably due to the fact that he got to spend the majority of the time eating :o) The therapist worked on getting him to eat soft solids like apples and cheese. She gave him some crackers in between as a way to motivate him to eat the soft solids. She also tried to get him to drink from a regular cup but all he seemed to do was dribble milk every where! During the second half of the appointment, Masinja worked on building his vocabulary with picture cards that represent various verbs. He is getting really good at identifying them. The therapist is going to update his speech goals because he has pretty much met all of the goals his original therapist had set for him.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 7 - 13 September 2009

2009-10-03T18:08:00.000-07:00

Yay, I'm 140 weeks old today!

Masinja had his 21st ECI session this week. We discussed working on getting him to make a choice. Up to this point, when asked whether he would like milk or juice all he does is repeat milk or juice. We also talked about working on motor imitation because Masinja has a really hard time copying actions. We are hoping that by improving his motor imitation skills we can then improve his speech. If he can imitate lip and tongue placement for the pronunciation of sounds it will most likely make it easier for him to articulate those sounds.

Masinja saw the same speech therapist this week that he did last week. He got to work more with the computer program and he now knows "fall down" very well. In fact, each time he responded correctly to a prompt the therapist showed him the action fall down because got the biggest kick out of watching a little boy fall down :o) The therapist tried really hard to get Masinja to wave bye bye when it was time to leave but he just wouldn't cooperate. I guess he'll figure it out eventually. Next week he'll start working with the feeding specialist.

Masinja and I attended another Parent Connections session this week. I went to a training on Potty Training. It was very informative and enlightening. I learned that Masinja is probably not ready yet to start potty training. We need to work on vocabulary associated with potty training first, such as wet, dry, dirty and clean. We also need to work on getting Masinja to tell us when he is wet or dirty. Once he is able to identify these sensations and starts to show more interest in learning to use the toilet it will be time to start potty training. Masinja had a good time playing with Miss Jacqui again and of course he went for the kitchen set and the food again :o)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 31 August - 6 September 2009

2009-09-07T19:49:00.001-07:00

Yay! I'm 139 weeks old today!

Masinja had a pretty eventful week this week. We were busy just about every day! On Tuesday Masinja got to go back to Parent Connections and play with Miss Jacqui and a bunch of other kids. I attended a workshop on Sensory Processing while Masinja was playing. I decided it would be a good idea to attend this particular parent training session because many of the therapists and educators that have worked with Masinja have mentioned the possibility of sensory problems. I have done quite a bit of research on the subject and T.M. and I have also talked about it at length. After attending the training sessoin and learning even more about it T.M. and I have decided to ask Masinja's doctor about it and see where that leads us. We'll keep y'all posted with what we find out.

Masinja also had speech therapy again on Tuesday. His regular speech therapist wasn't there though because she is out on maternity leave. He enjoyed his session with the therapist that took her place though. We have been working on expanding his vocabulary to include action words. He got to play with a computer program that dealt with verbs and he really liked it. The program involved children acting out actions and his favorite one was "fall down." Every time the boy on the computer would act out "fall down" Masinja would giggle uncontrollably :o)

Masinja had a follow-up occupational therapy evaluation on Wednesday. We are still having feeding issues with him. We stopped taking him to OT months ago because everyone kept telling us that it was normal for a toddler to be picky. We didn't want to take an appointment away from a child who would benefit more from OT than Masinja and we felt that we could work around his picky eating habits. In the last month or so though he has exhibited behaviors that concern us. He doesn't chew his food completely before he swallows it. It may not seem that alarming but when you consider the fact that he does this with chicken nuggets and carrots it is alarming. He still doesn't eat a wide variety of foods either and therefore doesn't have the most well balanced diet. The occupational therapist and speech pathologist that conducted the evaluation noticed that he primarily doesn't chew soft solids but instead swallows them whole. He also is not yet using utensils consistently and is still quite a picky eater. Most of the things that he needs help with can be addressed through speech; however, so starting next week he will get half an hour of speech and half an hour of occupational therapy. This will make things much easier on both Masinja and I because it means only one trip to the hospital instead of two!

Last, but not least, Masinja got to see his Uncle Boop (Jeremy) again this week. He came for a visit and Masinja enjoyed it very much.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 24 - 30 August 2009

2009-09-07T19:47:00.000-07:00

Yay! I'm 138 weeks old today!

Masinja and I went to Parent Connections for the first time this week. Parent Connections is a component of the ECI program here. It is basically a way to educate and train parents on various topics. While the parents are in training the children get to play in a setting that is much like a day care. We went for kind of an open house visit. Masinja seemed to really enjoy it and he got to meet some other children as well. His favorite part was the toy kitchen. He went right over to it and started playing with the pretend food. His favorite items were the chocolate ice cream and the hot dogs :o) Masinja got a new "teddy bear" also. Technically it isn't a teddy bear but we really don't know what else to call it! It's one of the characters from the Dr. Seus books. It's really soft and cuddly though. He hugged it and carried it around the entire week :o)

Masinja went to his first Air Show this week. He didn't seem very impressed though. He didn't even look up when the jets flew overhead. I was concerned that it might be too loud for him but he didn't even seem to notice the noise. Maybe next year he'll get more enjoyment out of it.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 17 - 23 August 2009

2009-09-07T19:46:00.000-07:00

Yay! I'm 137 weeks old today!

Masinja had his 20th ECI session this week. Masinja's teacher was impressed with his progress as far as his attention span is concerned. He is now completing two inset puzzles before moving on to another activity which is great! He used to flit from one activity to another every minute or less. Masinja's teacher suggested using more action words and encouraging him to imitate the actions as well to further build his vocabulary. We also discussed ways to help him make choices. It was a very productive session.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 10 - 16 August 2009

2009-09-07T19:45:00.000-07:00

Yay! I'm 136 weeks old today!

Masinja had a pretty uneventful week this week. The only highlight to report is that T.M. and I finally got him to sit in his chair. He normally stands as close to the television as he can get which obviously isn't good for his eyes! Below are before and after pictures :o)

Before Masinja learned to sit in his chair

After Masinja learned to sit in his chair

That's all for now.

Peace,
T.M.M.

Weekly Update -- 3 - 9 August 2009

2009-08-09T20:10:00.001-07:00

Yay, I'm 135 weeks old today!

Masinja had speech again this week. He cooperated for the most part. His therapist is working on getting him to immitate actions and sounds. She is pretty confident that if we can get him to immiate things then he will be able to correctly pronounce the few sounds that he is having the most difficulty with right now. He didn't have much of a problem immitating the actions such as clapping his hands and stomping his feet, but he would not immiate the sounds at all. She tried to get him to say buh, buh, buh; puh, puh, puh; and mmmmmm but he just wouldn't do it. I told her that I could pretty much guarantee that he would be saying those sounds all the way home. He didn't do that exactly but as we were getting into the car I said all three sounds and asked him to repeat me, and sure enough he did it without hesitation! He is just one stubborn little boy.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 27 July - 2 August 2009

2009-08-09T20:09:00.001-07:00

Yay, I'm 134 weeks old today!

Masinja went for the second half of his speech evaluation this week. It went much better this time, thank goodness! I scheduled the appointment for 11 o'clock which made a huge difference. He got to play with some toys again but this time when the speech therapist asked him to identify the pictures in the book he cooperated much better. It might have something to do with the fact that I bribed him with Kix :O) Anyway, the funniest part was when the speech therapist flipped to a picture of a clown. Before she could even ask Masinja what it was he pointed to it and said, "Mommy!" She and I started to laugh hysterically. It took a few minutes before we could proceed with the rest of the evaluation.

Masinja got to go to a Japanse restaurant this week. T.M. and I, along with Masinja, went to Kobe to celebrate our 11 year wedding anniversary. It is a hibatchi restaurant so you get to watch them cook right in front of you. Masinja had a blast! His favorite part was when they lit the grill. He kept watching for the fires. Each time a chef would light a grill he would grin from ear to ear and giggle like crazy. I hope that's not a sign :o)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 20 - 26 July 2009

2009-08-09T20:08:00.000-07:00

Yay, I'm 133 weeks old today!

Masinja went for a speech evaluation this week. It didn't go very well because the appointment was at one o'clock which is right in the middle of nap time. He didn't really cooperate at all with the speech therapist. She gave him some toys to play with and asked T.M. and I a series of questions. Once we finished that portion, she showed Masinja some pictures in a book and tried to get him to tell her what was in each picture. Masinja was more interested in playing with the toys :o) He pretty much threw three temper tantrums in the span of ten minutes! We have to take him back next week to finish the evaluation. Hopefully that portion will go much better.

Masinja went to the ophthalmologist for a checkup this week. He had to have his eyes dilated this time because he didn't have it done last time. The doctor basically did so in order to check Masinja's prescription. He was pleasantly surprised and so were T.M. and I. Even though Masinja has grown quite a bit in the last 6 months, his vision hasn't changed at all. It hasn't improved, but it hasn't gotten worse either!

Masinja had his 19th ECI session this week. We discussed his speech evaluation and talked about some strategies to use at home to help improve his language skills.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 13 - 19 July 2009

2009-08-09T20:06:00.000-07:00

Yay, I'm 132 weeks old today!

Masinja had another eventful week this week. We left Shreveport on Tuesday and drove to Tennesse to visit his Aunt Jenn, Uncle Kenny, and cousins Grace and Josh. We were supposed to leave on Monday but I got sick Sunday night so we had to stay in Shreveport an extra day. We had a great visit though. It had been six months since they had all come to visit us and Jenn, Kenny and the kids were anxious to see Masinja. I guess they were excited to see T.M. and I too :o) Our first day in town we got to go and watch Grace's dance class. It was pretty neat because we haven't been able to attend any of her recitals. She is a great dancer and I can't wait to see her dance again. Masinja had a good time because he was surrounded by pretty girls! The next day we all went to the Aquarium in Chattanooga. It was pretty cool because most of the exhibits contained fish that were native to Tennessee. Masinja's favorite part was the sting rays. There were all sorts of them and he thought they were neat. Our last day in town we spent relaxing at the house in preparation for our long drive home. It took us 17 hours to drive back to Nebraska. Masinja was trooper for the entire ride though.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 6 - 12 July 2009

2009-08-09T20:04:00.000-07:00

Yay, I'm 131 weeks old today!

Masinja had a pretty eventful week this week. We went to Shreveport for a visit. It has been a year and a half since we moved from there and we really wanted to go back and see everyone. It took us about 13 hours to get there but it was well worth the trip. We stayed with Masinja's Grandma Martha and he got to see his Aunt CC and his Uncle Robert almost every day. Our first full night in town we went to see Masinja's Mommy Tammy. Masinja had a blast and I'm pretty sure his Mommy Tammy did as well. She was his favorite nurse from the NICU and she's pretty fond of him too! The next day we took Masinja to the NICU so all of the nurses could see how big he has gotten. They were all pretty impressed with him and just amazed at how far he has come. Neither one of the doctors were there at that time so we went back that afternoon so Masinja's doctor, Dr. M, could see him. Unfortunately, by the time we got back there Masinja was passed out! He slept for most of the visit but he woke up toward the end and Dr. M got to see him in action. She was just as amazed as everyone else with how smart he is and how well he is doing. We went back to the NICU a few days later so that the nurses on the other shift could see him too. He had every one of those nurses wrapped around his little finger :o)

We also got to visit with our church family at St. Matthias several times while we were in town. Vacation Bible School was going on that week so we went a few nights and got to catch up with a lot of people. We got to spend extra time with Masinja's Aunt CC and Uncle Robert and Grandma Martha and Kori too because they were all conducting VBS. Masinja had a great time playing with all the kids. The highlight of VBS for him though was the "train" ride. The theme was St. Matthias Express so each night the kids would all get into a wagon that was pulled by a four wheeler and ride the "train" to VBS. Masinja absolutely loved riding the "train." He would laugh hysterically while going over the bumps and just grin from ear to ear while the ride lasted. It was a different story entirely when the "train" stopped though. As soon as the "train" came to a stop he would start to throw a temper tantrum!

We tried to see as many people as we could while we were in town but there just never seemed to be enough time in the day. Maybe the next time we go for a visit we'll be able to stay longer and see more people :o)

Masinja and his Mommy Tammy

Masinja and his Aunt CC and Uncle Robert

That's all for now.

Peace,
T.M.M.

Weekly Update 29 June - 5 July 2009

2009-08-09T20:02:00.000-07:00

Yay, I'm 130 weeks old today!

Masinja had a pretty uneventful week this week. We didn't take him to see any fireworks for the the 4th of July because we figured he wouldn't like the loud noise. We did get a good picture of him in his 4th of July outfit though :o)

4th of July Outfit

That's all for now.

Peace,
T.M.M.

Weekly Update -- 22 - 28 June 2009

2009-06-29T18:56:00.001-07:00

Yay, I'm 129 weeks old today!

Masinja had a pretty uneventful week. Since we don't have much of anything to report we figured we'd just share some pics that we took of him this week. Enjoy :o)

Dirt Bike Pic

Bird is the Word Elmo Pic 1

Bird is the Word Elmo Pic 2

Bird is the Word Elmo Pic 3

That's all for now.

Peace,
T.M.M.

Weekly Update - 15 - 21 June 2009

2009-06-24T10:53:00.001-07:00

Yay, I'm 128 weeks old today!

Masinja went to the ER this week. He wasn't doing better after the weekend stomach bug and started to refuse to drink anything, so we took him in at 0-dark-30 Monday morning. They gave him some pedialyte and some meds to help nausea. It took a little while, but he started drinking again and doing fine.

Masinja also had a neurology appointment this week. It's been almost 2 years since he's had a seizure, so we asked about taking him off the phenobarb. The doc suggested waiting another 6 months, so we'll go again in December and see what happens.

Last, Masinja had his 18th ECI session this week. It was with his regular teacher again. She was actually helpful and gave T.M.M. lots of suggestions for activities to help Masinja get to be a smarter boy than he already is.

That's all for now.

Peace,
T.M.

Weekly Update - 8 - 14 June 2009

2009-06-24T10:52:00.001-07:00

Yay, I'm 127 weeks old today.

Masinja had his 17th ECI session this week. His regular teacher is still on vacation, so the speech therapist that is assigned to his team came instead.

The services coordinator came as well. We spent a great deal of time discussing Masinja's language development as well as the possibility that he has Central Auditory Processining Disorder (CAPD). Ironically, all three of us had researched the disorder prior to the session and we all agreed that Masinja does exhibit some of the characteristics. I told both the speech therapist and the services coordinator that we are just waiting for the referral to be approved and then we are going to have Masinja evaluated. The remainder of the session was spent discussing strategies to teach Masinja the concept of a conversation. The speech therapist suggested doing activities that require taking turns, as this will help Masinja understand that a conversation involves taking turns. Overall, it was a very eventful session. The remainder of the ECI sessions this summer will be with Masinja's regular teacher, so it should be interesting!

As I mentioned in last week's post, Masinja and I had plans to get together with some neighbors for a play date this week. We met up with them and went to the Early Childhood Center on Wednesday. The boys had a great time and I have to admit the Mommies did too :O) That evening we met up with them again and went for a long walk. Afterwards we spent a little while at their house.

I don't know for sure if he picked it up at the Early Childhood Center or if he got it at their house, but Masinja got his first official stomach bug this week. It started Friday night and my poor little man had diarrhea so bad that I had to go and buy more diapers!! While I was on my way to the store, I saw our neighbors out for a walk and I found out that the little boy had had a stomach bug the previous week :O( Poor Masinja has been sick all weekend long. His little tush is extremely raw also. We have tried every diaper rash cream on the market and nothing has helped. It is heartbreaking every time we have to change his diaper, because it hurts so much that he screams and cries. We went and picked up a different brand of diaper rash cream this afternoon and it seems to be helping a little bit. Hopefully this will only last a few more days. At any rate, we plan on taking him to the doctor tomorrow just to be on the safe side and to see if we can get something else for this diaper rash. I know children are supposed to get sick but it is just so hard to watch our little man suffer!!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 1 - 7 June 2009

2009-06-04T07:09:00.001-07:00

Yay, I'm 126 weeks old today!

Masinja had a pretty eventful week this week. He had his 16th ECI session and his regular teacher didn't come, because she is on vacation. The occupational therapist that is on his team came instead. It was a very eventful session. She is very knowledgeable and observant. Masinja enjoyed playing with her.

We discussed his gravitational insecurity and she gave me some additional things to try to help Masinja get over that hurdle. She gave me some very good ideas as far as Masinja's feeding issues are concerned as well. In addition to broadening the spectrum of foods that he eats, we are also trying to get him to feed himself using utensils. She gave me some tips on how to accomplish that. All in all, it was a very good session and if we do decide to request a different teacher, I think we will ask for the occupational therapist.

T.M., Masinja and I made some new friends this week. T.M. and I took Masinja for a walk Thursday night and we met some neighbors, a woman and her son. The little boy is about Masinja's age and he has bright red hair. The boys seemed to get along pretty well and we are planning on getting together for some play dates next week.

The best part of the whole week was this weekend. T.M. and I took Masinja to the playground and he proceeded to climb up the stairs and then turn around and scoot back down on his butt! He must have done it about half a dozen times. He is definitely overcoming his gravitational insecurity. He still isn't very fond of the swings, but I'm sure that will change in a few weeks. He absolutely loves going down the slides though. T.M. and took turns catching him and then we all went down the really big slide a few times. We all had a great time and T.M. and I are so proud of our little man!

That's all for now.

Peace,
T.M.M.

Weekly Update - 25 - 31 May 2009

2009-06-04T07:08:00.001-07:00

Yay, I'm 125 weeks old today!

Masinja had a pretty uneventful week this week. About the only thing to report is the meeting that T.M. and I had with the services coordinator for ECI.

We wanted to discuss Masinja's teacher's attitude during his last ECI session, as well as our options. The services coordinator was shocked when I told her what Masinja's teacher said a few weeks ago concerning medically based therapies. She understood our position and agreed that we should use all the resources that are available to us. I was honest with her and told her that we had considered pulling Masinja out of the program but after careful consideration had decided not to. I also told her that we feel that ECI is beneficial to him ,but that at the present time we don't feel his needs are being met. We further discussed our concerns regarding language development and our plans to seek a medically based speech evaluation. I dropped several subtle hints about the possibility of replacing Masinja's teacher, but apparently I should have been more blunt about it. T.M. and I have decided to give it a few more months and if things remain the same then we are going to request a different teacher.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 18 - 24 May 2009

2009-06-04T07:07:00.001-07:00

Yay, I'm 124 weeks old today!

This week we found some videos that we forgot we had. Enjoy.

Cow Bum (Cheese Bread)

Sleepy Time in the high chair

That's all the excitement. It was actually a really boring week.

Peace,
T.M.

Weekly Update -- 11 - 17 May 2009

2009-06-04T07:06:00.002-07:00

Yay, I'm 123 weeks old today!

Masinja went to the dentist this week. He had to have his front bottom teeth cleaned because they had tartar build-up. He doesn't cooperate when T.M. and I brush his teeth so I wasn't surprised in the least. He didn't particularly like the cleaning though so maybe now he will starte cooperating! Other than that he got a clean bill of dental health. The denist also said that it is looking more and more possible that when his permanent teeth come in they will be white instead of yellow. Hurray!!

Masinja had his 15th ECI session today. He and I met his teacher at the Early Childhood Center. He had a great time in the gross motor room playing in the ball pit and playing with the matchbox cars. His teacher tried to get him to play on the little gym setup, but he really didn't want anything to do with it. She did manage to get him to walk down the stairs a few times though. We tried taking him into the reading room, but he didn't do very well in that environment. It was right in the middle of song time and he I think it was too loud and busy.

Based on a conversation that I had with Masinja's teacher while we were at the Early Childhood Center, T.M. and I are considering pulling Masinja out of ECI. I told her about Masinja's followup PT appointment last Friday and how his physical therapist was concerned about his speech and asked one of the speech therapists to sit in and listen to him. I explained to his teacher that the speech therapist doesn't feel that Masinja has an articulation problem but rather a phonics problem. I told her that he was on the waiting list to recieve therapy. She got really annoyed and said, "I hate the medically based therapies! They always do things so differently." This really surprised T.M. and I, because she has been telling us for weeks now that we are more than welcome to seek therapy outside of ECI and that in fact most families do. We haven't decided for sure yet what we are going to do, but we will let you know when we do.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 4 - 10 May 2009

2009-06-04T07:06:00.001-07:00

Yay, I'm 122 weeks old today!

Masinja went for a followup PT appointment on Friday. When he was discharged in October, his therapist said she wanted to follow up with him in 6-8 months just to make sure he was still on track. She was pretty pleased with his progress and even amazed at his cognitive development. During the evalution she had him kneel and while he was doing so she asked him to tell her some letters. Masinja proceeded to start naming letters. She turned to me and said, "Do you know how great that is? That is a completely abstract idea and for him to be able to grasp it is great!"

I told her that he knows all, but a few of the letters of the alphabet and that he knows most of the numbers 0-9, as well as the colors blue and green. She was pretty impressed! We then took Masinja out to the playground setup that they have in the clinic so she could see if he had improved as far as climbing stairs. He did a pretty good job going up, but he wouldn't go down unassisted and in fact he was shaking and grabing her shirt when he was on the edge of a step. She said he has gravitational insecurity. Basically, he's not comfortable when he doesn't feel supported. It explains why he doesn't like swinging for very long too. She gave me some ideas on how to work with him to help him overcome it. Other than the gravitational insecurity, he is right on track as far as PT is concerned, speech however is a different matter all together.

During his PT evaluation Masinja's therapist was concerned about his speech. She knew that he was in the ECI program and she asked how that was going. I admitted to her that T.M. and I still had concerns about his speech. I told her that there seemed to be some miscommunication as far as the ECI program was concerned and that we didn't feel like our concerns were being taken seriously. His therapist asked my permission to have one of the speech therapists sit in on his evaluation for a few minutes to listen to him talk. I agreed of course. The speech therapist sat in for about 10-15 minutes. I explained to her that he was in ECI and that we had been told that he has an articulation problem and not to worry about it because due to his age it is normal. She said she thought he had a phonetic problem and not an articulation problem. She said that it seems to her that he isn't hearing the sounds correctly and therefore isn't processing them correctly which is why he can't pronounce them correctly. She put him on the waiting list so we could take him for a full evaluation and hopefully start speech therapy. We will keep you posted on what happens.

We went to the zoo again today. We stayed for about 3 - 4 hours and saw a bunch more exhibits. We still haven't seen everything yet though! I think Masinja's favorite animals this time were the bears. Once agian it took a lot of pointing to get him to actually pay attention to the animals. He was more into people watching. We didn't actually go into the Dairy World exhibit but T.M. insisted that I take their picture next to the sign. It's kind of a personal joke with Masinja's Godfather Tom :O)

Dairy World Pic

That's all for now.

Peace,
T.M.M.

Weekly Update -- 27 April - 3 May 2009

2009-06-04T07:05:00.000-07:00

Yay, I'm 121 weeks old today!

Masinja had his 14th ECI session today. His teacher was pleased with his progress as far as vocabulary development. She gave me some suggestions concerning his feeding in order to try to get him to eat a wider variety of foods. She also wants us to continue to work on activities that will build his upper body strength.

Masinja went to the zoo for the second time this week! The weather was finally nice enough for us to go. We stayed for about 3 hours and only saw about a third of the zoo. Masinja didn't really pay attention to the animals. He was more interested in just walking around! T.M. and I had to point the animals out several times before he actually focused on them. Masinja's favorite animals were the penguins, the sea turtles and the giraffes.

Giraffe Pic

That's all for now.

Peace,
T.M.M.

Weekly Update -- 20 - 26 April 2009

2009-06-04T07:03:00.000-07:00

Yay, I'm 120 weeks old today!

Masinja had a great time this week. His Uncle Boop (Jeremy) came for a visit this weekend. We were going to go to the zoo yesterday, but it was cold and rainy, so we went to the Durham Museum instead. The museum is located in what used to be the train station. It's pretty neat, because they have a train that you can walk through. Masinja really enjoyed walking through the train and exploring things at the museum.

Masinja started saying a new word this week. We had Uncle Boop set up on some air mattresses in the living room, because we don't quite have a guest room yet. Masinja kept climbing up on the air mattresses and then he would lay down and say "heepy, heepy" and then proceed to suck his thumb and cuddle with his bunny. It was absolutely adorable. We tried to get it on video, but I'm not sure how clear it is. I guess you'll have to judge for yourselves. Enjoy :O)

Heepy, Heepy Video

We were going to participate in the March for Babies walk today, but the weather was even worse today than it was yesterday. There were severe thunderstorms and it was pretty chilly. We decided it would be better to keep Masinja home, so that he didn't get sick. We were pretty disappointed though, because the March for Babies walk is the perfect way to honor Madelinja's memory. It was been two years since she became Masinja's guardian angel.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 13 - 19 April 2009

2009-04-22T19:27:00.000-07:00

Yay, I'm 119 weeks old today!

T.M. and I have been trying to take Masinja on walks, weather permitting. We have had a few rainy days, so we haven't been able to go on a daily basis.

I decided to try to take him to the park early this week. We drove over to the newer base housing, because they have some really great playgrounds complete with slides and toddler swings. Masinja was super excited when we started walking on the sidewalk to get to the playground. We went down two of the slides a few times and I pushed him in the swing for about 10 minutes. He didn't want to play for very long though, because he was more interested in walking on the sidewalk! I figured I might as well just drive back home and take him for a walk around the neighborhood instead.

We had a pleasant walk with the exception of the German Shepherd that got a little too close for comfort. Thank goodness the dog's owner was outside at the time, because he made her back off. Luckily the dog didn't scare Masinja and we continued on our walk. It took us quite a while to complete our walk because Masinja kept stopping at every crack in the sidewalk to inspect it. I think he was fascinated with the texture of the concrete, because he kept scratching it will his finger nails. We eventually made our way back home and Masinja didn't throw a temper tantrum this time when we got there. He was probably tuckered out from playing on the playground. :0)

T.M. and I took Masinja to the playground again this weekend. There is a school directly behind base housing that has two playgrounds. We decided to check out the preschool playground. It took longer than it should have to walk to the playground, because Masinja got distracted by the fence. He kept stopping and hitting it to hear it clang. When we finally got to the playground, he had a blast! They had several different slides and he giggled as he slid down them. There weren't any toddler swings, but he was more interested in the wood chips that were on the playground than anything else anyway. He wasn't too happy when we left the playground, but as soon as he realized we were going to continue our walk he was happy as a clam. :o)

Masinja's Uncle Boop (Jeremy) is coming for a visit next weekend, so we are going to take him to the zoo. I'm sure he will have a great time.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 6 - 12 April 2009

2009-04-22T18:26:00.000-07:00

Yay, I'm 118 weeks old today!

Masinja had his 13th ECI session this week. He's had some improvement since the last session, although he is still mouthing a lot of his toys. T.M. and I need to work with him on choosing certain items that are okay for him to mouth and redirecting him to those items.

Masinja's teacher is going to get a feeding continuum from the feeding specialist, so we can work on his texture aversions. As far as speech is concerned, Masinja is now using color words and his teacher wants us to reinforce that by having him identify which object he wants, i.e. "Do you want the red block or the blue block?" Hopefully by his next session he will be using his color words more frequently.

Masinja celebrated his 2nd Easter today. Since he is still too young for loads of candy, we gave him clothes instead. He also got two sets of drum sticks. I know T.M. and I were probably crazy to willingly give him drum sticks, but he has a set of bongos and a tambourine which he absolutely loves! We figured we might as well start him early since he obviously loves music so much and he bangs on everything anyway. :o)

Easter pic 1

Easter pic 2

Easter pic 3

That's all for now.

Peace,
T.M.M.

Weekly Update -- 30 March - 5 April 2009

2009-04-22T18:25:00.000-07:00

Yay, I'm 117 weeks old today!

The weather is finally breaking and we have had some warm and sunny days. It was so nice one evening that I decided to take Masinja for a walk around the neighborhood. As we walked, we saw a few dogs in their yards and Masinja decided to "talk" to them. I had to tug on his arm quite a few times to get him moving again because he was too busy say "bwoof, bwoof!" I had planned on taking him all the way around the block, but it got a little bit windy and his face and hands were getting cold. Instead, we just turned around and walked back the way we came. Again Masinja got distracted by the dogs, but we eventually made it back to the house. I don't think he realized we were home at first but when I opened the screen door and put the key in the lock he started to throw a fit! He was crying and saying "walk-around" repeatedly. :o) It took me a good 10 to 15 minutes to calm him down. I guess now that the weather is clearing up we will have to go for walks on a daily basis.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 23 - 29 March 2009

2009-04-22T18:24:00.000-07:00

Yay, I'm 116 weeks old today!

Masinja had his 12th ECI session this week. Actually it was his 6-month review. Masinja's teacher, as well as the services coordinator and Speech therapist, were in attendance. We discussed where Masinja had started in October and how far he has come since then. We also discussed the concerns that T.M. and I still have regarding Masinja's communication skills. Due to our concerns, as well as the fact that Masinja does indeed have a deficit in this area, the Speech therapist is now on his team.

We set several new goals for him, including increasing his vocabulary by adding verbs, adverbs and adjectives; and working on his feeding issues. Masinja still has some deficits in fine motor skills, which will also be addressed.

Overall, T.M. and I are very pleased with the progress that Masinja has made and we are looking forward to his continued improvement over the next 6 months.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 16 - 22 March 2009

2009-04-22T18:23:00.000-07:00

Yay, I'm 115 weeks old today!

Masinja had a pretty uneventful week this week. I had planned to take him to the park because the weather has started to break, but unfortunately it's still a little too cold. We have spent a lot of time watching Sesame Street or "Pa Pa Pweet" as he calls it and playing inside.

On another note, T.M. and I have decided that we are going to start potty training Masinja. He has started showing some interest in the potty and lets us know when he needs a diaper change by saying "change-a-booty." We are going to buy a training toilet and start by just letting him get used to it first. When the weather is officially nice, I will start in earnest.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 9 - 15 March 2009

2009-04-22T18:22:00.000-07:00

Yay, I'm 114 weeks old today!

Masinja had his 11th ECI session today. His teacher and I went over his progress and talked about the milestones that he has reached as well as the ones that we still need to work on. We will be meeting in a few weeks for his 6-month review to discuss his progress and set new goals for the next 6 months.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 2 - 8 March 2009

2009-04-22T18:19:00.000-07:00

Yay, I'm 113 weeks old today!

Masinja had a pretty uneventful week this week. The weather has been pretty nasty so we have spent a great deal of time indoors. As a result Masinja is now addicted to Sesame Street! He absolutely loves Elmo and gets extremely excited when the Elmo's World segment comes on. He cracked me up the first day he watched it because when Elmo went off the screen for a second Masinja got very agitated. When the episode ended it was ever worse, because he started to cry! I think the reason he likes Elmo so much is because I have a pair of Elmo slippers. He has been carrying them around the house and hugging them. :o) We took him to get his own Elmo doll this weekend and wound up getting him Elmo, Ernie, Grover and Cookie Monster mini dolls.

Elmo Doll pic

That's all for now.

Peace,
T.M.M.

Weekly Update - 23 February - 1 March 2009

2009-03-04T18:05:00.001-08:00

Yay, I'm 112 weeks old today!

Masinja had his 10th ECI session this week. His teacher brought the speech therapist with her so we could further discuss our concerns regarding his speech. He is actually saying quite a few words on his own so the speech therapist isn't too concerned about his language development right now. Both she and Masinja's teacher gave me some activities to do with him to help him develop the muscles in his face and his tongue a little bit more. By doing so it will help with his articulation. We will be having his 6-month review at the end of the month and most likely be developing some new goals for him.

That's all for now.

Peace,

T.M.M.

Weekly Update -- 16 - 22 February 2009

2009-03-04T18:04:00.001-08:00

Yay, I'm 111 weeks old today!

Masinja had a pretty uneventful week this week other than the fact that he got to spend more time with T.M. because he was still on leave. We pretty much stayed close to home again this week due to inclement weather. Since we don't have a whole lot to report I figured I would post some pics of Masinja in his cold weather gear.

Snowsuit Pic 1
Snowsuit Pic 2

That's all for now.

Peace,
T.M.M.

Weekly Update -- 9 - 15 February 2009

2009-02-14T18:30:00.000-08:00

Yay, I'm 110 weeks old today!

Masinja got to spend extra time with T.M. this week because he had to take leave for two weeks since I am still recooperating from sugery. We spent most of our time at home because the weather didn't really permit much else.

Masinja had his 9th ECI session this week. His teacher as well as the occupational therapist came and talked with us about our concerns concerning his speech. His teacher also shared a printout with us that showed Masinja's current development as well as the skills that an average child should be doing at his age. Next week Masinja's teacher will be bringing the speech therapist with her so we can further discuss our concerns about his speech.

Since we didn't have a whole lot to report for this week, T.M. and I decided to include another video of Masinja after bathtime. He loves it when I put lotion on his because it tickles. I'll let the video speak for itself :O)

Lotion Video

That's all for now.

Peace,

T.M.M.

Weekly Update -- 2 - 8 February 2009

2009-02-14T18:25:00.000-08:00

Yay, I'm 109 weeks old today!

Masinja had his MRI this week. It was a rapid MRI like last time which was good because he didn't have to be sedated which meant he didn't have to skip breakfast and lunch. He wasn't very impressed this time though! The whole process is only supposed to be about 5 minutes long but it took about 15-20 minutes this time. Masinja decided he didn't like being swaddled in a sheet and having his head confined. The technician was about halfway through the MRI when she had to start over because Masinja scooted himself out of position. He had to be strapped down in order to finish but he still managed to get one of his arms free and had his hand up by his head! It was actually pretty commical because Masinja's Aunt Lisa was waiting outside for us and she heard the technician say, "Is that a hand? How did he get his arm free?" My job was to keep him calm and keep him as still as possible but I obviously didn't do a very good job! Masinja was just too strong and it was impossible. He cried most of the time too and kept saying Mommy. After a few minutes though he figured out that I wasn't going to save him and yelled Daddy! It just about broke my heart and I started to cry with him :O)

That's all for now.

Peace,

T.M.M.

Weekly Update -- 26 January - 1 February 2009

2009-02-05T18:41:00.001-08:00

Yay, I'm 108 weeks old today!

Masinja has had a pretty eventful week. He had his 8th ECI session this week. His teacher Karen taught him how to climb up onto the couch. It is now one of his favorite things to do. We have to watch out though because he hasn't completely figured out how to get back down safely! Karen also got him to actually sit still for about 5 minutes and build with his blocks. Previously, if you tried to build with his blocks he would just take apart anything that you built and then run around the room with a block in each hand. He really seemed to enjoy it this time though. T.M. and I are looking forward to actually being able to play with him now :O)

Masinja's Aunt Tess (Lisa) came to stay with us for a few weeks to help take care of him. I had my galbladder removed the day after Masinja's birthday so I can't pick him up for about a month. He has really enjoyed spending so much time with his Aunt Tess. She has taught him a few more words: hold on, sweet, dude and peanut butter cup :O) They have been playing a chasing game every night and it is just too cute. Masinja says I ga goo ga - which translates to I'm gonna get you - to get his Aunt Tess to chase him. The funniest part is that he doesn't run away from her but towards her instead :O)

I'm Gonna Get You Video

That's all for now.

Peace,
T.M.M.

Weekly Update -- 19 - 25 January 2009

2009-02-05T18:08:00.000-08:00

Yay, I'm 107 weeks old today!

Masinja had a very eventful week this week. On Tuesday he had an ophthalmology appointment. It went really well and his ophthalmologist was impressed with the progress Masinja has made with his glasses. He still has a bit of a lazy eye but it isn't that pronounced as long as he wears his glasses. The doc said it looked promising and as long as he continues to improve he won't need surgery to fix the eye muscles.

Masinja turned 2 years old on the 20th. He had his 24 month well baby exam that day as well. He weighed 27 pounds 7 ounces and measured 33 1/2 inches long! He has certainly come a long way!! We weren't able to celebrate his birthday that day because I was scheduled to have surgery the following day. Masinja's Aunt Tess flew in that night though to stay with us for 2 weeks to help take care of him. We did celebrate his birthday on the 24th though and he was pretty excited about his presents. He pretty much did the same thing he did on Christmas as far as unwrapping his presents :O) He wasn't very impressed with his birthday cake though. He wouldn't really eat it. All he did was take all the frosting off and mush it between his fingers!

Birthday Presents
Opening Birthday Presents
Birthday Cake
Eating Birthday Cake 1
Eating Birthday Cake 2
Eating Birthday Cake 3

That's all for now.

Peace,
T.M.M.

Weekly Update -- 12 - 18 January 2009

2009-02-05T18:07:00.000-08:00

Yay, I'm 106 weeks old today!

Masinja was sick again this week. He started with the sneezing and stuffy nose on Thursday and on Friday night he started to run a low-grade fever. He didn't sleep very well Friday night and by Saturday night he started coughing a lot. His cough sounded really awful so we took him to the acute care clinic on base Sunday morning. His lungs were clear but he had a really bad infection in his left ear and a mild one in the right ear. It was a real bummer that he got sick when he did too because we had planned to have his birthday party at Chuck E. Cheese's on Sunday afternoon but we had to cancel it :O(

That's all for now.

Peace,
T.M.M.

Weekly Update -- 5 - 11 January 2009

2009-02-05T18:05:00.000-08:00

Yay, I'm 105 weeks old today!

Masinja had a pretty uneventful week this week. He had his 7th ECI session and it went pretty well. He has made quite a bit of progress with his vocabulary and is now saying between 60 and 75 words spontaneously and repeating just about everything he hears.

Masinja has been giving us some trouble at night when it's time to go to sleep. We are pretty sure it's because he misses his Aunt Jenn, Uncle Kenny and cousins Grace and Josh though. They left last weekend and when he went to bed Friday night they were still here but when he woke up Saturday morning they were gone. I am pretty sure he is going through separation anxiety now because he is afraid something similar will happen with T.M. and I! Hopefully we can get him back on schedule soon!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 29 December 2008 - 4 January 2009

2009-02-05T17:58:00.000-08:00

Yay, I'm 104 weeks old today!

Masinja had a pretty eventful week this week. His Aunt Jenn, Uncle Kenny and cousins Josh and Grace came for a visit. He was very excited to see them and spent a lot of time playing with his cousins. Masinja also got to go to a museum for the first time. We all took a trip to the Durham Museum. It is located in what used to be the Omaha train station. We got to walk through a train that was actually part of the railway system back in the 1880s. Masinja's favorite part was a bell that T.M. rang for him. He thought it was the coolest thing!

Train Museum Pic 1
Train Museum Pic 2

That's all for now!

Peace,
T.M.M.

Weekly Update -- 22 - 28 December 2008

2009-02-05T17:50:00.000-08:00

Yay, I'm 103 weeks old today!!

Masinja celebrated his second Christmas this week. He was pretty excited about all of his presents, or at least the paper that they were wrapped in! T.M. and I had to help him unwrap his presents because he would tear off a small piece of paper and get distracted playing with it and forget to unwrap the rest of the present :O) He also got pretty distracted once he got something unwrapped and was anxious for us to take each thing out of its packaging so he could play with it already. It probably took us about half an hour or so for him to unwrap all of his presents!

Christmas Presents
Christmas Presents
Mason loves his giraffe
Mason riding his giraffe
Mason and his guitar
Mason and his big smile

That's all for now.

Peace,
T.M.M.

Weekly Update -- 15 - 21 December 2008

2008-12-21T15:12:00.002-08:00

Yay, I'm 102 weeks old today!

Masinja went to the doctor on Monday and thankfully he did not have an ear or sinus infection. The doctor told us that his lungs were clear and that there really wasn't much more that we could do other than what we were already doing. He said we just had to let the cold run it's course. Hopefully Masinja will feel better soon.

Masinja also went to the neurologist this week. He had a good checkup but he had to have bloodwork done to make sure he was in the therapeutic range with his phenobarbitol. He was quite upset when he got his blood drawn but he calmed down when the phlebotomist gave him some stickers. In fact, he fell asleep in the car on the way home with a sticker clutched in each hand :O)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 8 - 14 December 2008

2008-12-21T15:12:00.001-08:00

Yay, I'm 101 weeks old today!

Masinja had his 6th ECI session this week. It was a pretty eventful session too. We met his teacher at the Early Childhood Center and Masinja absolutely loved it. They have two rooms: a gross motor room which is kind of like an indoor playgound, and a reading room where children get to participate in story and music time, as well as play with a variety of toys. We spent most of our time in the gross motor room, because they have a ball pit and a slide, as well as all sorts of ride-on toys. Masinja's teacher warned me that when it was time to go he would probably get very upset. She assured me that is was a normal reaction and that all children throw fits when it's time to leave. Well, she was right because Masinja sat down on the floor and proceeded to throw a temper tantrum when it was time to go home!

Masinja got his first official cold this week also. His nose started running on Friday afternoon and he has been all stuffed up and running a low-grade fever ever since. I have been using saline spray and the bulb syringe to suction his nose several times a day, because it's the only way he gets any relief. We are planning on taking him to the doctor tomorrow just to make sure he doesn't have an ear or sinus infection and to see if there is anything else we can do for him. He also has a check-up with the neurologist on Tuesday, so we'll keep you posted on how that goes as well.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 1 - 7 December 2008

2008-12-21T15:10:00.000-08:00

Yay, I'm 100 weeks old today!

Masinja had his 5th ECI session today. His teacher came at lunch time so she could observe his eating habits and maybe give us some pointers on getting him to use his utensils and not throw his food on the floor. It went pretty well and we learned a few things that I'm anxious to try with him.

Masinja got to see his Daddy play hockey this week. T.M. has joined a Beer Hockey league and he is having a blast. He is playing center instead of goalie which is hard for me to get used to considering the fact that he played goalie in high school and all through college! Masinja and I got to "see" T.M. score his first goal last night though. I say "see" because it was kind of hard to tell that it was T.M. but I knew someone on his team had scored. He brought the puck out with him after the game and gave it to Masinja who proceeded to say, "Hockey, hockey, hockey" while trying to eat the puck :O)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 24 - 30 November 2008

2008-11-28T19:09:00.003-08:00

Yay, I'm 99 weeks old today!

Masinja celebrated his second Thanksgiving this week. Last year he wasn't able to eat Thanksgiving dinner because he had just started eating baby food about a month before and he didn't have any teeth! Well, he wasn't very interested in eating Thanksgiving dinner this year either. He ate one piece of turkey, a few pieces of sweet potato, and a bite of cranberry sauce, but he threw his mashed potatos and stuffing on the floor. He ate almost an entire roll all by himself though. I had to hide the remainder of his Thanksgiving dinner in yogurt just to get him to eat it. This is the norm most days though. He absolutely loves yogurt. When I take the container out of the refrigerator he says "woogar" over and over again :O)

Who You Calling a Turkey PJ's Pic

That's all for now.

Peace,
T.M.M.

Weekly Update -- 17 - 23 November 2008

2008-11-28T19:09:00.001-08:00

Yay, I'm 98 weeks old today!

Masinja had his 4th ECI session this week. T.M. was able to be here because he was off that day. His teacher talked with us a lot about Masinja's tendency to throw his toys around the room as well as throwing temper tantrums. She gave us some suggestions for redirecting his behavior. We also worked a bit on getting him to actually roll a ball back and forth. T.M. and I have been working with him on this for a few months now, but Masinja is more interested in throwing the ball around the room than rolling it back and forth! He is doing a little better now though and it is one of his favorite games to play now. Our goals for the next couple of weeks are to work on curbing his tendency to throw things and getting him to tell us whether he wants more to eat or more to drink.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 10 - 16 November 2008

2008-11-28T19:08:00.000-08:00

Yay, I'm 97 weeks old today!

Masinja went to PT this week for the last time. He was discharged because he has met all of his goals for gross motor skills. He will need to go back in 6 - 8 months though for a checkup to make sure he is still on track. I know he is going to miss his therapist immensely. Whenever we say her name he repeats us and grins from ear to ear!

Masinja also went to OT this week. T.M. and I have been having a lot of trouble getting him to eat lately. He prefers to throw things on the floor or to spit his food out rather than chew and swallow it. He has become extremely picky, too. He has been subsisting on chicken nuggets, mac and cheese and yogurt. His therapist gave me a few ideas to try to get him to eat more and she also got him transitioned to a cup with a straw. It was actually pretty neat how she did it.

She used a honey bear container with a long flexible straw. She explained to me how it was easy to sqeeze the honey bear and get a bit of water to go up the straw and into Masinja's mouth. She said after a little while he would figure out that sucking on the straw would produce the same result. Well after only about 5 minutes Masinja was doing it all by himself! He loves to drink from a straw cup now because he can hold it all by himself like a big boy :O)

That's all for now.

Peace,
T.M.M.

Weekly Update -- 3 - 9 November 2008

2008-11-10T11:51:00.001-08:00

Yay, I'm 96 weeks old today!

Masinja went to the dentist this week. He now has 12 teeth with 4 more coming in. The dentist gave us some good news. His back molars are half white and half yellow so hopefully when his permanent teeth come in they won't be nearly as discolored as his baby teeth are now.

Masinja had his third ECI session this week. He has mastered the art of saying more during mealtime when he wants more to eat. Our next goal is to get him to say more eat or more drink to indicate which of two choices he wants more of. He has started using more in other situations also which is great. My favorite is when I am singing to him and he says more to get me to continue singing. He absolutely loves the song "You are My Sunshine" and before I have even finished singing it the first time he is already saying more to get me to sing it again :O)

Dentist Visit Pic

That's all for now.

Peace,
T.M.M.

Weekly Update -- 27 October - 2 November 2008

2008-11-10T11:49:00.000-08:00

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.

Weekly Update -- 20 - 26 October 2008

2008-10-26T17:49:00.000-07:00

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.

Weekly Update -- 13 - 19 October 2008

2008-10-26T17:48:00.000-07:00

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.

Weekly Update -- 6 - 12 October 2008

2008-10-26T17:47:00.000-07:00

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.

Weekly Update -- 29 September - 5 October 2008

2008-10-05T14:51:00.000-07:00

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.

Weekly Update -- 22 - 28 September 2008

2008-10-05T14:50:00.000-07:00

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.

Weekly Update -- 15 - 21 September 2008

2008-10-05T14:49:00.000-07:00

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.

Weekly Update -- 8 - 14 September 2008

2008-09-15T12:45:00.000-07:00

Yay, I'm 88 weeks old today!

Masinja has been pretty busy this week. He is now standing up all by himself like a pro. He doesn't like to sit still for very long at all, so he is constantly on the go.

Masinja also went to the doctor this week. He was having some tummy problems and was pulling on his ears quite a bit, so we took him in for a checkup. The PA and pediatrician noticed that his right eye was turning in quite a bit, so we decided that it was time to call the opthamologist. He had an appointment scheduled for November, but the last time we were there, the opthamologist said to bring him in sooner if we saw any changes. He has his appointment tomorrow so we'll give y'all an update in next week's post.

And as if this week wasn't busy enough, this next one will be even busier for Masinja. Aside from his eye appointment, he has an Early Childhood Intervention evaluation. The team will be coming to our house to evaluate him and determine whether or not he has any developmental delays. His pediatrician thinks that he may qualify for speech therapy, but we won't know the results of the evaluation until early next month. We'll be sure to let you know the results as soon as we do.

Last, but not least, we video taped Masinja at bath time.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 1 - 7 September 2008

2008-09-07T19:43:00.000-07:00

Yay, I'm 87 weeks old today!

We were so intent on posting a video of Masinja walking so y'all could see it, that we forgot to mention a few things in last week's post!

Masinja will be undergoing another evaluation in the middle of this month. A week ago this Friday we met with a woman who is the coordinator for the Early Childhood Intervention program. It is a program that is run through the local school district. Basically, they will evaluate Masinja to determine whether or not he has any developmental delays. Depending on the outcome of the evaluation, he may qualify for a number of services. Based on what we talked about with the coordinator, Masinja may indeed have some delays as far as speech and communication are concered. We won't get the results of the evalution until the first of October, but we will keep y'all posted.

Also, Masinja got to go to a picnic last week. T.M. had a picnic for work and we all went. At the picnic, we had a welcome/send off for people who were new and people who were leaving. After each person was recognized, everyone clapped. Well Masinja decided he was on the 'delayed' clapping program. He would wait for everyone to clap. Look around to make sure everyone stopped, and then he clapped. It was like he couldn't clap when everyone else was clapping. So, he basically did the delayed clapping for about a dozen or so people. It was pretty amusing to say the least. Masinja also got to meet another NICU graduate that was at the picnic. One of the folks from T.M.'s division had a premature baby. He only spent 3 weeks in the NICU, though, and is doing very well. Overall, everyone seemed to have a good time.

Now, on to this week. It started off pretty slow for Masinja, but he has had a pretty eventful weekend.

He went to PT on Friday and proceeded to be his usual self, doing things for his physical therapist that he doesn't do for us at home. This has been the norm with him since she started working with him and she gets the biggest kick out of it :O)

Anyway, our goal when we left the last time was to get him to stand without having to use a piece of furniture to pull himself up. His therapist showed us a few tricks to get him to do so. Needless to say, T.M. and I didn't have much luck at all. Well, shortly after we got to PT on Friday, Masinja was pretty much standing up on his own. His therapist tried a technique that involves just giving him a cue by pushing on his hips with your index fingers. It worked like a charm and after about 2 or 3 times he didn't need the cue anymore. He has even done it a few times at home yesterday and today. At the rate he is going, he will be a PT graduate before we know it. He doesn't go back for 3 weeks since he is doing so well.

Masinja also went to the park for the first time today. We finally found a park close to the house and we decided that since it was such a beautiful day we would take him. He got to swing in a swing, (which he really wasn't all that impressed with), walk across a bridge (which he loved), slide down the slide, (which he thoroughly enjoyed) and "ride" a motorcycle (which was by far his favorite)! He also got to play in the sand a bit after which he promptly put his hand in his mouth. Oh well, eating a little dirt won't hurt him that much!! All in all I think his first trip to the park was a success.

Here are some pics from his time in the park:

swing
motorcycle
slide
bridge

That's all for now.

Peace,
T.M.M.

Weekly Update -- 25 - 31 August 2008

2008-08-31T18:36:00.000-07:00

Yay, I'm 86 weeks old today!

Here's a video of Masinja doing his 'thing'! He's gotten so vocal lately, that we're having trouble getting into the conversation. Of course, he wouldn't talk that much for this video. That is, until after we shut off the camera, and he talked non-stop for 20 minutes...

Enjoy!

That's all for this week.

Peace,
T.M.

Weekly Update -- 18 - 24 August 2008

2008-08-28T08:40:00.001-07:00

Yay, I'm 85 weeks old today!

Masinja had a very eventful week. On Monday he had a feeding evaluation done by an Occupational Therapist and a Speech Therapist, who is also a feeding specialist. We had gotten a referral, because we were having trouble transitioning him to table food and to a sippy cup. We found out that there is actually a food continuum and that we had skipped a level completely!! I don't know about anyone else, but I figured since the baby foods are labled stage 1, stage 2 and stage 3, that you just go from one stage to the next. Well, that is not the case. Before you move on to stage 3, you're supposed to introduce things like carrot sticks and celery stalks and pretzels and such. These things are not intended for consumption, but are meant to teach the baby how to chew and to increase the gag reflex. Well, needless to say, we're having to backtrack with Masinja now. The OT and ST both said that we are feeding him what we should be feeding him though.

The week before his evaluation I was actually successful in getting him to eat the gerber graduates meat sticks and cut up veggies and fruit. He still isn't exactly chewing them though. He has a high palate due to being intubated for so long. He basically just puts whatever we give him in the indentation and then smushes it with his tongue.

We also pretty much got him transitioned to a sippy cup the day before the evalution too. T.M. forgot to put the rubber stopper in the sippy cup Sunday and Masinja chugged his juice! From that point on he was pretty much ok with the sippy cup with and without the rubber stopper. Some mornings he still gets a bottle, but we're working on that.

The most exciting news from this week though is that Masinja started walking on his own!! T.M. and I were sitting in the living room watching TV and Masinja just pulled himself up to the coffee table and proceeded to start walking. We were so excited!! He is still pretty wobbly but I'm sure he will get better as he gets more confident. His physical therapist was so happy to see him walking on Friday. She just said, "Masinja, I have been waiting for this!"

Our next goal is to get him to stand up without having to pull himself up on a piece of furniture. His therapist was so impressed with his progress that she said he can go back to a biweekly schedule. She is hoping that by the time we go back in 2 weeks he will be standing up on his own and then he can be released. We will take some video of him walking and post it next week.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 11 - 17 August 2008

2008-08-13T19:01:00.000-07:00

Yay, I'm 84 weeks old today!

Masinja had a follow up appointment with the neurologist this week. He now weighs 25 pounds and he is still measuring 31 inches long. He had to have his phenobarb levels checked to make sure his dose is correct. He did pretty well considering the phlebotomist ended up having to stick him in both arms because the vein in the first arm rolled!! He got to sit in T.M.'s lap instead of having to be pinned down though so that helped a lot.

On another note, we got the results of Masinja's rapid MRI this week. According to his neurosurgeon here, he no longer fits the criteria for hydrocephalus. The ventricles in his brain are still slightly enlarged though. He also has some fluid between his skull and his forehead but that should go away as he gets bigger. He has to go back in 6 months to have another rapid MRI to see if there have been any changes. If everything is still the same, then Masinja will be released from the neurosurgeon. If his ventricles have gotten bigger though then he is eligable for an alternative procedure to drain the excess fluid. That means he won't have to have a shunt!!

Masinja has a feeding evaluation next week because we are having trouble transitioning him to table food and to a sippy cup. We'll let you know how that goes.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 4 - 10 August 2008

2008-08-13T19:00:00.000-07:00

Yay, I'm 83 weeks old today!

Masinja did a great job at PT this week. He took more unassisted steps than T.M. and I have ever seen him walk. His theraptist was pretty impressed too. He pretty much performed for us also. T.M. and I were telling her all the words that Masinja is saying now and each time we said a word he would repeat it. His vocabulary now includes: Mama, which he uses both to address me and whenever he wants something, probably because he knows Mama will give it to him; Daddy, which sounds more like Gaggy sometimes; Doggie, which he says whenever he sees or hears the dogs; baker's man, he obviously loves playing Patty Cake; and last but not least, hockey, which we think stems from the fact that he loves to watch T.M. play hockey on the play station.

Masinja also walked up stairs for the first time this week. We often have to take him downstairs to the undercroft and let him walk around during church because he gets restless. I usually let him walk back to the staircase and then pick him up and carry him back to the chapel. This Sunday he decided he wanted to walk instead! I let him walk to the base of the stairs and was about to let go of his hands and pick him when he picked up his right leg and placed in on the bottom stair and began to push. He walked up the entire flight of stairs except for the last 6 steps. I was so proud of him. I told T.M. when we got back to our pew. It was T.M.'s turn to take Masinja downstairs about 15 minutes later and when they came back Masinja walked up the entire flight of stairs again!! He is certainly making progress. It will be interesting to see what he does at PT next week.

Masinja has a followup appointment with the neurologist next week. We'll let you know how it turns out.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 28 July - 3 August 2008

2008-08-13T18:59:00.000-07:00

Yay, I'm 82 weeks old today!

Masinja has had a pretty eventful week. We took a roadtrip to Ohio to visit family and we have had a great time. Masinja went to the zoo for the first time this week. We went to the Columbus Zoo on Friday and it was absolutely HUGE!! He got to see all sorts of animals and he got to spend time with his Uncle Gary, his cousins Taylor and Jordan, and his Godparents Tom and Leslie.

We went to a giganitc mall and an Irish Festival on Saturday which was pretty neat. Masinja also got to spend time with his Uncle Sean and his Aunt Joyce that day. Everyone was surprised with how big he was because the last time they saw him was last October. His Uncle Gary kept calling him Hulk-a-Baby because he has gotten so big :O)

We also had a family picture taken on Sunday and Masinja was a complete ham!! It took the poor photographer at least 8 tries to get a good shot of all 8 of us because Mason wouldn't cooperate and look at the camera. She told the rest of us to look at the camera while she would do whatever was necessary to get Mason to smile and look at the camera at the same time. The reason it took so many shots is because the rest of us were watching him to see what he would do :O) We finally got a good shot though and she took some other pictures as well. One of the pictures that she took of Mason is absolutely priceless!! He looks like an angel.

Pic

We are heading back to Nebraska in a few days and we only hope he is as content on the ride back as he was on the way here!

That's all for now.

Peace,
T.M.M.