Thursday, January 22, 2009
My son......Luke
As I'm sure I mentioned before the boys are HUGE Star wars fans. Well for the past couple of weeks on occasion Jojo would tell us to call him Luke (Luke Skywalker) when they were playing. Well, now that has turned into him INSISTING on being called Luke. When he wakes up in the morning I say "Good Morning honey." He looks at me and says "Uke"(yep, that is Luke without the "L") He even went so far as to tell his therapists "Uke" as soon as they said hello to him. He talked on the phone to his Ama and Papa and immediately told them they were talking to "Uke." I wonder how long this phase will last...........it is all day, anytime you use his real name, he corrects you! I am going to get this on video and try to post it soon. It is very funny.
He had a very productive week at therapy. He is using more spontaneous 2-3 word phrases now. It is really exciting for us to hear him do that! Let's hope we are moving forward some more! My hope is that we can get him down to 3 sessions a week soon. Oh I love my little Luke!
He had a very productive week at therapy. He is using more spontaneous 2-3 word phrases now. It is really exciting for us to hear him do that! Let's hope we are moving forward some more! My hope is that we can get him down to 3 sessions a week soon. Oh I love my little Luke!
Monday, January 19, 2009
Daddy's turn again!!!
Since Daddy had today off, he took Jojo to therapy again! That gave me the opportunity to finally take Dominic sledding, he had been asking for so long!
Jojo worked on putting the "w" on the beginning of words as well as some 2-3 word phrases. Daddy said that Miss Jenny said he did a "wonderful job" today! He played Dora the explorer bingo and did his work on his Kaufman cards.
I was glad he did so well at therapy today, because I had been a tiny bit discouraged over the past 3 or 4 days. He would almost constantly use his famous go-to phrase "a-dah" anytime he wanted anything or was trying to get somebody's attention. He would also use this response anytime that I would ask him a question or ask him to make a choice. He would also say Mama when he wanted something and then when I would ask him what he would say "a-dah." Hungry, scared, hurt, looking for something?.........I had no clue and wow is that frustrating! He says "mama" and "a-dah" almost like a question if you could imagine that. "mama?" It is heartbreaking because his eyes are pleading for me to understand or help him. I kept saying to Dave, "what is going on with him?" The only way to deal with it is to ask him question to get to a yes or no and then keep going from there. The longer this goes on the more frustrated he becomes. I keep telling him, please Jojo use your words........An example of his communication is to bring me his cup of juice after he takes a drink and he says, "mama?" Well I know now that he wants me to go put his juice on the counter for him or hold it for him. But all we get is "mama." His therapists say just keep giving him a cue or even ask him a question. Maybe to say, "oh, Jojo you want me to hold your juice for you?" "Tell Mommy hold juice please." Then hopefully he will say at least a part of that phrase. I do have to say Dominic understands him incredibly well. When something is very unclear to me, Dominic will tell me what he said without hesitation.
That being said, today he seems a little better, I think......The words and phrases he is saying are getting more clear so that is encouraging.
Jojo worked on putting the "w" on the beginning of words as well as some 2-3 word phrases. Daddy said that Miss Jenny said he did a "wonderful job" today! He played Dora the explorer bingo and did his work on his Kaufman cards.
I was glad he did so well at therapy today, because I had been a tiny bit discouraged over the past 3 or 4 days. He would almost constantly use his famous go-to phrase "a-dah" anytime he wanted anything or was trying to get somebody's attention. He would also use this response anytime that I would ask him a question or ask him to make a choice. He would also say Mama when he wanted something and then when I would ask him what he would say "a-dah." Hungry, scared, hurt, looking for something?.........I had no clue and wow is that frustrating! He says "mama" and "a-dah" almost like a question if you could imagine that. "mama?" It is heartbreaking because his eyes are pleading for me to understand or help him. I kept saying to Dave, "what is going on with him?" The only way to deal with it is to ask him question to get to a yes or no and then keep going from there. The longer this goes on the more frustrated he becomes. I keep telling him, please Jojo use your words........An example of his communication is to bring me his cup of juice after he takes a drink and he says, "mama?" Well I know now that he wants me to go put his juice on the counter for him or hold it for him. But all we get is "mama." His therapists say just keep giving him a cue or even ask him a question. Maybe to say, "oh, Jojo you want me to hold your juice for you?" "Tell Mommy hold juice please." Then hopefully he will say at least a part of that phrase. I do have to say Dominic understands him incredibly well. When something is very unclear to me, Dominic will tell me what he said without hesitation.
That being said, today he seems a little better, I think......The words and phrases he is saying are getting more clear so that is encouraging.
Monday, January 12, 2009
Mommy's day off.......(sort of....)
I was so excited when Dave told me last night that he was taking Monday off to give me a break. Isn't that sweet!! Also it was very much needed because little did I know before I went to bed last night, it would be a sleepless one. It started with Jojo falling out of his little bed around 10:30 and then he woke up about 4 times during the night and was very tough to get back to sleep. So Dave and I were both up with him most of the night!
After I made Dom's lunch and made breakfast, I gave Dave the instructions for the morning......(which he probably could have done without, but he knew I would tell him anyway) including, what time to leave, what Dominic needs to have for school, best route to therapy etc....
He dropped Dominic off down the street at our friend's house, and was on his way with Jojo to therapy. He even sent me a video of Jojo doing some good work via his phone!!! I had over 2 hours all to myself!!! When he returned with Jojo we had 10 minutes to let Jojo eat oatmeal, change his diaper, and then leave to make his appt with the Ear Nose and Throat Doctor!
Jojo was very good at the doctor. (he is used to doctors, he visits many!) He actually enjoys going to the doctor! Ear tubes are still in. The right one appears to be working its way out though. He briefly went over the usual issues, watching for apnea, the stridor, progress in his speech, and looked in his nose and throat. I told him how we think his stridor has been worse lately and so we will still continue to monitor that. Usually it is outgrown by age 2 but he is now 32 months and it is still continuing. He will see him again in 4 months.
We have quite a busy week, 3 more therapy sessions, an eye doctor appt, and an appt with the orthotist to be fitted for new braces. (that was supposed to be before Christmas but was cancelled because of the weather. Dominic also turns 7 this Wednesday!!!
After I made Dom's lunch and made breakfast, I gave Dave the instructions for the morning......(which he probably could have done without, but he knew I would tell him anyway) including, what time to leave, what Dominic needs to have for school, best route to therapy etc....
He dropped Dominic off down the street at our friend's house, and was on his way with Jojo to therapy. He even sent me a video of Jojo doing some good work via his phone!!! I had over 2 hours all to myself!!! When he returned with Jojo we had 10 minutes to let Jojo eat oatmeal, change his diaper, and then leave to make his appt with the Ear Nose and Throat Doctor!
Jojo was very good at the doctor. (he is used to doctors, he visits many!) He actually enjoys going to the doctor! Ear tubes are still in. The right one appears to be working its way out though. He briefly went over the usual issues, watching for apnea, the stridor, progress in his speech, and looked in his nose and throat. I told him how we think his stridor has been worse lately and so we will still continue to monitor that. Usually it is outgrown by age 2 but he is now 32 months and it is still continuing. He will see him again in 4 months.
We have quite a busy week, 3 more therapy sessions, an eye doctor appt, and an appt with the orthotist to be fitted for new braces. (that was supposed to be before Christmas but was cancelled because of the weather. Dominic also turns 7 this Wednesday!!!
Sunday, January 11, 2009
New phrase
I'm very excited Jojo has a new two word phrase..... "Who's that, Mommy?" and it is pretty clear!!! I'm glad he can say that because before he would just point and say "a dah?" He is so funny because he was asking me who every person was on TV today. I just kept saying, "I don't know honey." And then he would ask again.
I also forgot to mention he has spent one whole week now in a big boy bed! On a whim, we decided to take his crib down last weekend and go buy him a bed. He was very excited and slept in it without a problem from the first night! It is a Disney Pixar Cars McQueen bed (of course!) Dave and I think it is hilarious because he doesn't even try to get out of the bed, not even in the morning! It's as if he doesn't realize he CAN get out of the bed! We remember Dominic doing the same thing when we moved him into a bed. Jojo never tried to get out of his crib or even stood up in it. Dominic however was moved into a toddler bed at 19 months because he was climbing out of his crib and fell once. Now the next issue with him is trying to get him interested in that potty. He was very excited to go pick it out (months ago) however, he decided it was more fun to play with than to sit on and that was that. I put it into the basement a month ago, and haven't mentioned it since. I learned one thing potty training my first boy.......they won't do it until they are ready. I'm not one to stress about that type of thing.....it will happen in time. Besides, there are enough things to stress about.
My big stess right now is all the $$$ for therapy. We now have to pay our 20% copay at Beaumont which costs us $245 a month, in addition to what we pay at the Kaufman Children's Center which is between $500-$575 a month. ugh...........enough said.
I also forgot to mention he has spent one whole week now in a big boy bed! On a whim, we decided to take his crib down last weekend and go buy him a bed. He was very excited and slept in it without a problem from the first night! It is a Disney Pixar Cars McQueen bed (of course!) Dave and I think it is hilarious because he doesn't even try to get out of the bed, not even in the morning! It's as if he doesn't realize he CAN get out of the bed! We remember Dominic doing the same thing when we moved him into a bed. Jojo never tried to get out of his crib or even stood up in it. Dominic however was moved into a toddler bed at 19 months because he was climbing out of his crib and fell once. Now the next issue with him is trying to get him interested in that potty. He was very excited to go pick it out (months ago) however, he decided it was more fun to play with than to sit on and that was that. I put it into the basement a month ago, and haven't mentioned it since. I learned one thing potty training my first boy.......they won't do it until they are ready. I'm not one to stress about that type of thing.....it will happen in time. Besides, there are enough things to stress about.
My big stess right now is all the $$$ for therapy. We now have to pay our 20% copay at Beaumont which costs us $245 a month, in addition to what we pay at the Kaufman Children's Center which is between $500-$575 a month. ugh...........enough said.
Monday, January 5, 2009
Today Jojo returned to therapy after 2 1/2 weeks off! He worked on some new long words, such as bicycle and telephone. He also worked on two different phrases. I want _________. and also Put away _______. His therapist would tell him what word to put in the blank. When he is given a word for word feed, slowly, he has pretty good clarity. If you ask him to repeat a phrase such as "Put away toys," he may say only one or two of the words. He needs a model to follow so we have to go slowly when we want him to repeat us. He also is having trouble with the "w"' sound on the beginning of words. He leaves many of the initial consonant sounds on the beginning of words. Socks are "ocks" want is "at" and so forth which makes him difficult to understand sometimes. When he spontaneously talks such as when he is playing, I probably understand only 10% of what he is saying. The only time he really talks with more than a word or two is 1)when he is in bed and 2) sometimes when he is playing. (about half the time he is totally silent while playing)
I was kind of emotional about all of this today. I think because when we are home and he is in his comfortable environment I understand most of what he says and don't think that he sounds too bad. I have noticed however that when we are at different places or get together with family and friends, I have to explain much of what he says. At least he has some clear words to get him by such as yes, no, eat, please and thank you. We will just keep on working.
Hopefully this entry makes sense. As all moms of young ones would understand I am doing about 10 other things while typing this. Making dinner, answering phone calls, and listening to two little boys battle each other playing Star Wars. (and they are not quiet!!!) And now they are fighting over a toy so that is my cue to be done!
I was kind of emotional about all of this today. I think because when we are home and he is in his comfortable environment I understand most of what he says and don't think that he sounds too bad. I have noticed however that when we are at different places or get together with family and friends, I have to explain much of what he says. At least he has some clear words to get him by such as yes, no, eat, please and thank you. We will just keep on working.
Hopefully this entry makes sense. As all moms of young ones would understand I am doing about 10 other things while typing this. Making dinner, answering phone calls, and listening to two little boys battle each other playing Star Wars. (and they are not quiet!!!) And now they are fighting over a toy so that is my cue to be done!
Friday, January 2, 2009
Happy New Year!
Wow. What a busy time of year! Things have finally settled down and I now can get to some things I have been meaning to do, including updating this blog! Between get togethers and visits from out of town family and friends, it seems like we haven't had a spare minute. What fun though! Jojo had his first sleep over away from home. He stayed with Ama and Papa and (his brother of course) one night! He felt like such a big boy and had no tears, no asking for Mommy, and so, so, so much fun! He went to bed as happy as happy as could be and was not happy that we came to get him the next day. It was so nice for the kids to spend so much time with Ama and Papa, there is nothing they like more!!! Jojo was very excited about Christmas this year and really got into opening his gifts. He is so polite and would say "thank you Mommy," after every present he opened Christmas morning!
We have not had any speech therapy since December 17th due to the holidays, but we will resume our usual schedule on Monday! I was kind of nervous about the long break, but he has been doing okay and we have been working with him and doing his speech homework!!
He is now spontaneously saying many words and some 2 and 3 word phrases. While very, very exciting for us, I'm not sure how much would be understood by people other than his family so we will keep working on his clarity. Some days we still have to literally pull words out of him, to get him out of that comfort zone of quietness.
After weaning Jojo off of his Prevacid per doctor's instructions, we returned to the GI doc this past Monday and left with instructions and a Rx to start Prevacid again. He also wants him to start drinking Pediasure to get some more calories and added nutrition. (he eats a very limited diet!) The reason for starting the medicine again is because he feels that the reason he is choking so much when eating and drinking is due to reflux. He said that a lot of times kids with bad reflux choke a lot. He did gain weight for the 2nd visit in a row so that is good. He is up 1 and 1/2 pounds since August. Doctor said that he just looked better this time, healthier he said! The funny thing is that everyone who has seen him lately has said the same! I've heard over and over from people he doesn't see too often that he seems like a different kid than last time they saw him!!!
We have not had any speech therapy since December 17th due to the holidays, but we will resume our usual schedule on Monday! I was kind of nervous about the long break, but he has been doing okay and we have been working with him and doing his speech homework!!
He is now spontaneously saying many words and some 2 and 3 word phrases. While very, very exciting for us, I'm not sure how much would be understood by people other than his family so we will keep working on his clarity. Some days we still have to literally pull words out of him, to get him out of that comfort zone of quietness.
After weaning Jojo off of his Prevacid per doctor's instructions, we returned to the GI doc this past Monday and left with instructions and a Rx to start Prevacid again. He also wants him to start drinking Pediasure to get some more calories and added nutrition. (he eats a very limited diet!) The reason for starting the medicine again is because he feels that the reason he is choking so much when eating and drinking is due to reflux. He said that a lot of times kids with bad reflux choke a lot. He did gain weight for the 2nd visit in a row so that is good. He is up 1 and 1/2 pounds since August. Doctor said that he just looked better this time, healthier he said! The funny thing is that everyone who has seen him lately has said the same! I've heard over and over from people he doesn't see too often that he seems like a different kid than last time they saw him!!!
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