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.
Sunday, January 11, 2009
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!!!
Saturday, December 13, 2008
Happy Mommy!
I just wanted to give a quick update to the blog. Jojo has been still going strong with imitation skills and some spontaneous 2 word phrases such as help please, mama go, all done, and hi (someones name). We are still working on clarity of many of his words but I'm sure that will come. I am really, really enjoying each day with him now. (I know that sounds horrible, but the first 2 years were not exactly easy for us!) He is so agreeable, laid back and HAPPY! No terrible two's for this guy!! It seems whatever I tell him his response is "ah-tay" (okay). We are going on new adventures every day together! He is a completely different child the past 2 months than he ever was! It is so obvious how much better he feels health wise, not to mention the fact he can communicate so much better with everyone now. I think back now and understand why he never quite seemed happy or like he felt good......he couldn't eat because of erosions in his esophagus, he couldn't sleep because of GERD, floppy cartilage in his airway, very large adenoids and sleep apnea (he stopped breathing an average of 9x per hour). I also have to add that it doesn't make for a happy mommy or daddy getting up 6 or 7 times a night! He also continuously had fluid in his ears for about 8 months. Looking back on all of that (and more) I am so thrilled and relieved with how far we have come. He is still followed by many doctors for his issues but we are so grateful to have a lot of this behind us. I can't express enough how happy I am with Jojo's progress. He is such an amazing little boy. (and darn cute I might add!!) I am so blessed!
Thursday, December 4, 2008
Jojo has still been making steady progress and we are thrilled! All 3 of his speech therapists are amazed how quickly he is progressing! Speech 4x a week and our daily work at home are really paying off! We know we still have a long way to go, but we are certainly enjoying each new word and even a couple of two word phrases. We love to listen to that cute little voice trying out new words all the time. My favorite is something he said to my Mom last night when she asked him a question, he said "ah no-no" for "I don't know." This morning after I dropped something and said "oh crap" I hear a little voice behind me saying "ah-cap" and giggling and then saying it over and over and over. Guess I better remember he can now imitate me! He definitely seems sooooo much happier and less frustrated now that we are able to understand him better. We are so happy for him.
In therapy they are working still on naming actions, putting two words together and also still reinforcing single words and different consonant and vowels combinations so that he does not lose what he has already learned. He is still also working on clarity of some of the words that he does have. There are some sounds which he doesn't have at all yet but they are typically sounds that come later anyhow. He can't pronounce l,y,w,f,v,ch,th,x,z,q,r but then again a lot of 2 1/2 year olds can't pronounce those either. He has had some success with longer words that change the vowel and the consonant. He cannot yet end his words with the "n" sound which really changes the sound of the whole word. "Green" is "geet" "on" is "ot" etc.
He has an appt with a pediatric opthamalogist in January due to a blocked tear duct that keeps giving him trouble. When most kids are wiping their nose he is wiping his eye because it is so watery and runny. We have tried the standard treatment which is warm compress and massage, but have had little improvement. It always looks like he is tearing up because the tears don't drain properly. He has an appointment with his GI doc two days before Christmas and an appointment with an orthotist to assess how his ankle braces are working/fitting on the 19th.
In therapy they are working still on naming actions, putting two words together and also still reinforcing single words and different consonant and vowels combinations so that he does not lose what he has already learned. He is still also working on clarity of some of the words that he does have. There are some sounds which he doesn't have at all yet but they are typically sounds that come later anyhow. He can't pronounce l,y,w,f,v,ch,th,x,z,q,r but then again a lot of 2 1/2 year olds can't pronounce those either. He has had some success with longer words that change the vowel and the consonant. He cannot yet end his words with the "n" sound which really changes the sound of the whole word. "Green" is "geet" "on" is "ot" etc.
He has an appt with a pediatric opthamalogist in January due to a blocked tear duct that keeps giving him trouble. When most kids are wiping their nose he is wiping his eye because it is so watery and runny. We have tried the standard treatment which is warm compress and massage, but have had little improvement. It always looks like he is tearing up because the tears don't drain properly. He has an appointment with his GI doc two days before Christmas and an appointment with an orthotist to assess how his ankle braces are working/fitting on the 19th.
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