Tuesday, March 9, 2010

Weekly Update -- 8 - 14 March 2010

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

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

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

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

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

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

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

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

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

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

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

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.