I thought I had survived the entire school year without even a sniffle.......close but....nope!!! After being knocked down and out for all of last week with a horrible cold myself...........now the kids have been sick since Thursday...........Dominic woke up with a fever of 104 in the middle of the night. He continued to run a fever of between 101-103 for days. After the first 3 days he started with a bad cough, which for my kids means we need to bring out the nebulizer for breathing treatments! Jojo was also running a fever, only he never gets high ones, he maxed out at 100 on his worst day. They both have been coughing soooooo bad, especially at night. After having a fever for 5 days, his temp is finally normal today. This was his last chance to get it down, doctor said if he still had it today, he would need to see him again!!!
I spent most of last night up with Dominic, poor little guy even throws up from coughing so hard. He was trying to sleep on the recliner, me on the couch. Ugh....we have all been cooped up in the house for way too long!
Jojo's speech is really coming along! Daddy took him to therapy last week when I was sick and this week we haven't been there because the kids are sick. He is still working on his clarity and on expanding his length of phrases and sentences. He sometimes will not be able to get a word out, though he knows exactly what he wants to say. That has frustrated him lately and it is very difficult to watch him struggle with that. For example he had these three little animals he was playing with, a giraffe, a zebra, and an elephant. I held up the giraffe and asked him what animal it was.......he paused and said ummm.....so I asked again and he said very quietly and with hesitation....."zebra?" He knows that wasn't correct but couldn't get out the correct word. If I ask him which one is the giraffe, he immediately picks the right one without hesitation.....it is a speech/language issue. He is still having trouble making the h, w, and y sounds. Those he should be able to say at his age. His therapist has also started to work on correct placement of the mouth/tongue for the "l" and the "r" will be a later developing sound so we haven't started to work on that one yet.
He is such a sweet little guy. He is very huggy/cuddly and always says "I love you" to all of us. He is such a helper, loves to clean up toys!!! I can't believe he is growing up so quickly. He is Dominic's shadow and gets hurt feelings if Dominic wants to play alone. The only big issue I am having with him is potty time..........he wants NOTHING to do with it.........
Tuesday, April 21, 2009
Wednesday, April 8, 2009
Trip to the ER
Let me start from 3am Tuesday morning.....
Dominic wakes me up because right above his "privates" hurts. (area of the bladder) He was in pain when he was standing or sitting, but was fine when laying down. So we were up with him the remainder of the night/early morning. Dave went into work and I made all of the arrangements to keep the boys home from school and therapy. (It took 5 phone calls) I called the pediatrician first thing when they opened to schedule Dominic an appointment.
Meanwhile Jojo upon waking up was screaming hysterically the moment I took him out of his bed saying "my neck" "I no feel good" I brought him downstairs and made him comfortable on the couch. He didn't want to eat or move. I called the pediatrician and tried to get him in ASAP but the soonest they could see him was at 3pm along with Dominic. I didn't think he needed to go to ER, he didn't have a fever, started to eat a little and was comfortable when laying a certain way. If I picked him up or he moved his head, it was horrible......I have never seen him in so much pain.
Luckily Dave was able to leave work a little early to come help me out with the trip to the doc. At this point Jojo had not stood up or walked AT ALL throughout the day, very scary. He wouldn't move from the couch.
Once we were to the doctor's office we were told the Dominic had blood in his urine and the he may have a small hernia. She couldn't feel one but said it can come and go if it is small. We will just have to keep watching him. As for the blood in the urine, she has no idea why except from some kind of irritation, and will have to repeat the urine in a couple of days. Just keep a watch on him.
Jojo was running a low grade temp there 99.2 and was inconsolable when asked to move his head. His doctor suspected torticollis but coupled with the temp, the fact he wouldn't walk at all, and the fact he had been sick with a cold the week before told us he would need to go to the Emergency Room right from the office. She called the ER so they would be expecting us.
We dropped Dominic off to my parents and headed to the hospital. After the trauma of the IV, collecting urine, rectal temp, and CT scan.........we were home 7 hours later! The pediatrician had been concerned about him having a retropharyngeal abcess (way back in the throat where it couldn't be seen w/o a CT scan) so they wanted to rule that out along with about 3 or 4 other things that were very very scary!!! They were very concerned that he still wouldn't stand up.(the doctor's tried, it just hurt him too much)
It ended up being an atypical case of torticollis (basically muscle spasms in the neck that were cause his neck to be stiff and all of his pain) most likely brought on as a side effect of his respiratory virus he had the week before. They also found he had ketones in his urine, that were most likely because he was burning fat from not eating. He can't afford that!!! He is still struggling to gain weight, he was about 27 lbs when they weighed him at the hospital. He will be 3 next month and still hasn't tripled his birth weight!!
I was thrilled that they let us come home and found nothing more serious! That poor little guy just can't seem to catch a break!!! He was absolutely AMAZING, just laid in the bed with his blankie for 7 hours watching crappy hospital TV channels (no cartoons) with no food or anything and didn't complain once! In fact he was flirting with one of the female doctors, flashing his dimples and being charming!! He did get called a girl twice ( which I still don't get, it must be the hair) Dave and I were not quite so content... obviously worried sick and very tired (had been up since 3am) having to take turns on the one chair we had to sit on!!
He is doing MUCH better today! I'm just keeping on Motrin and letting him rest.
Dominic wakes me up because right above his "privates" hurts. (area of the bladder) He was in pain when he was standing or sitting, but was fine when laying down. So we were up with him the remainder of the night/early morning. Dave went into work and I made all of the arrangements to keep the boys home from school and therapy. (It took 5 phone calls) I called the pediatrician first thing when they opened to schedule Dominic an appointment.
Meanwhile Jojo upon waking up was screaming hysterically the moment I took him out of his bed saying "my neck" "I no feel good" I brought him downstairs and made him comfortable on the couch. He didn't want to eat or move. I called the pediatrician and tried to get him in ASAP but the soonest they could see him was at 3pm along with Dominic. I didn't think he needed to go to ER, he didn't have a fever, started to eat a little and was comfortable when laying a certain way. If I picked him up or he moved his head, it was horrible......I have never seen him in so much pain.
Luckily Dave was able to leave work a little early to come help me out with the trip to the doc. At this point Jojo had not stood up or walked AT ALL throughout the day, very scary. He wouldn't move from the couch.
Once we were to the doctor's office we were told the Dominic had blood in his urine and the he may have a small hernia. She couldn't feel one but said it can come and go if it is small. We will just have to keep watching him. As for the blood in the urine, she has no idea why except from some kind of irritation, and will have to repeat the urine in a couple of days. Just keep a watch on him.
Jojo was running a low grade temp there 99.2 and was inconsolable when asked to move his head. His doctor suspected torticollis but coupled with the temp, the fact he wouldn't walk at all, and the fact he had been sick with a cold the week before told us he would need to go to the Emergency Room right from the office. She called the ER so they would be expecting us.
We dropped Dominic off to my parents and headed to the hospital. After the trauma of the IV, collecting urine, rectal temp, and CT scan.........we were home 7 hours later! The pediatrician had been concerned about him having a retropharyngeal abcess (way back in the throat where it couldn't be seen w/o a CT scan) so they wanted to rule that out along with about 3 or 4 other things that were very very scary!!! They were very concerned that he still wouldn't stand up.(the doctor's tried, it just hurt him too much)
It ended up being an atypical case of torticollis (basically muscle spasms in the neck that were cause his neck to be stiff and all of his pain) most likely brought on as a side effect of his respiratory virus he had the week before. They also found he had ketones in his urine, that were most likely because he was burning fat from not eating. He can't afford that!!! He is still struggling to gain weight, he was about 27 lbs when they weighed him at the hospital. He will be 3 next month and still hasn't tripled his birth weight!!
I was thrilled that they let us come home and found nothing more serious! That poor little guy just can't seem to catch a break!!! He was absolutely AMAZING, just laid in the bed with his blankie for 7 hours watching crappy hospital TV channels (no cartoons) with no food or anything and didn't complain once! In fact he was flirting with one of the female doctors, flashing his dimples and being charming!! He did get called a girl twice ( which I still don't get, it must be the hair) Dave and I were not quite so content... obviously worried sick and very tired (had been up since 3am) having to take turns on the one chair we had to sit on!!
He is doing MUCH better today! I'm just keeping on Motrin and letting him rest.
Saturday, March 14, 2009
We survived!
I know I say this quite often, but this was probably one of the busiest weeks of all times for us. We had a wedding shower, birthday party, music recital, one doctor appt for Dom, two doctor appts for Mom, and all of Jojo's therapy sessions...........all of this on top of having water seeping into our basement. Talk about a nightmare! Now it is Saturday and we have our usual weekend chaos! Dave has school and work and we are trying to catch up from the week's events! I also have one little sickie, (Dom) who seems to have a sore throat! I have looked at the calendar for next week and have already begun stressing over it!!!
Jojo is doing WONDERFUL!! His speech is become more clear and he is attempting to say so much now. It seems hard to believe a year ago at almost 2 years old, he was using all sign language and couldn't even say simple sounds such as, ba or pa. He is proof of how far apraxic kids can come with proper and EARLY intervention. He wouldn't even be close to where he is right now if we had waited for him to catch up. That being said he still has lots of work to do, he still struggles with certain sounds, words, and motor speech patterns. He is having some problems with assimilation he will say "my map" when he means "my nap" and multi syllabic words can be very hard for him to say. The melody of his speech is a little off and he still is leaving off beginning sounds of words quite often. If you haven't seen this little boy in a while, you will be amazed at the difference!!! I'm so proud of him. I will try get some video up soon.
Jojo is doing WONDERFUL!! His speech is become more clear and he is attempting to say so much now. It seems hard to believe a year ago at almost 2 years old, he was using all sign language and couldn't even say simple sounds such as, ba or pa. He is proof of how far apraxic kids can come with proper and EARLY intervention. He wouldn't even be close to where he is right now if we had waited for him to catch up. That being said he still has lots of work to do, he still struggles with certain sounds, words, and motor speech patterns. He is having some problems with assimilation he will say "my map" when he means "my nap" and multi syllabic words can be very hard for him to say. The melody of his speech is a little off and he still is leaving off beginning sounds of words quite often. If you haven't seen this little boy in a while, you will be amazed at the difference!!! I'm so proud of him. I will try get some video up soon.
Monday, March 2, 2009
Neurologist
This morning we went straight from Kaufman Center to Jojo's appointment with his neurologist. She asked about how he has been doing with everything and then observed him walking, running and did some range of motion with his arms and legs. She picked him up moved his little body around and then talked some more with me. She again told us how he has pretty low muscle tone. She said he is very low not only in his extremities but his hips, shoulders and trunk. It is a little bit noticeable by his gait when he walks. I notice all the time how much more difficult things are for him physically than they should be. She said his hypotonia will probably make things harder for him than for other kids. He has trouble with muscles stayed flexed, they tire easily and his balance is harder to control. He also has to be careful because his joints and ligaments are so bendable he could get injured more easily. (dislocations etc) No gymnastics for this guy! Hopefully in time this will be less challenging for him. As I said before, this has been a benign finding with him (cause unknown) and probably present since birth. He has had many blood tests done, and also an MRI of his brain, all of which have been completely normal. So basically we just have to work with it. Last thing is he really needs to be in physical therapy. This is very upsetting to me because of our insurance issues with this. Basically he is only covered 60 consecutive days during each year and that won't begin until June because that is when he began PT last year. I'm going to fight insurance on this also. We cannot pay for PT on top of all of his speech.
Wednesday, February 25, 2009
Is it Friday yet?
I can't believe it is only Wednesday, what a crazy week! I think it always feels like that after a break.
Jojo was Mr. Giggles at therapy today. It is so nice to see him like that since he is soooo serious most of the time. Jenny is started to be a little tougher on him when it comes to clarity. She is not letting him get away with not hearing EVERY sound in a word anymore. We are thrilled how much he is starting to talk......lots of phrases and some sentences now. It is also very frustrating because unless it's a single word or short phrase, we are having lots of trouble understanding him. Oh, it is so hard because I ask him to repeat himself a few times and then he is frustrated, and all the while he is looking at you knowing you don't understand him. Yesterday it was Lucky Charms he wanted and I heard "icky eems" over and over again. Today he was sitting on the step by the front door while I was getting my things ready to go. Instead of sitting on the step he wanted to wait on the rug. He said "on a ug" And while in a hurry to get out the door this morning it took a couple of minutes to figure out what he was trying to tell me. I am NOT complaining, yes it is better than him not speaking like before, however it is very time consuming and frustrating and another obstacle to overcome. The encouraging part is that his single words are getting more clear, so there is hope!!!
Yesterday when we were leaving Beaumont we walked by a lady near the entrance of the building and he said "scooze me" A two year old with such wonderful manners, I had to share!! It is nice to hear some of the things that go on in that little head!!! We passed my friend's parents house where I drop their daughter off after school and Jojo recognized it and said, "who dat house mommy?" He also has started yelling out "somebody help me!" once he is in bed for the night and does it every once and awhile until he falls asleep. No tears, just waits patiently for someone to fall for it! There is another story from yesterday at therapy, but it involves poop and wouldn't be nice to share. (it is funny though!)
Jojo has his first dentist appointment tomorrow. I have tried twice before and both times have had to cancel because he was sick. He is not sick all that often so that was an odd coincidence. I have a couple of concerns about his teeth. One of which is his tooth enamel is visibly worn away and his teeth almost have a translucent look on the edges. Since he has such bad GERD maybe that is why. We shall see.
Well our homework for this week is working on "W" sound again!! Also he is having trouble blending the "Y" sound "you" is "ooo" and blowing his air out for an "H" instead of "hat" he says "at" We also have to remind him not to drop those beginning consonants and other sounds. He cannot pronounce "L" or "R" yet so those words are still difficult to understand. "right here" sounds like "ite ah" but in the right context may be understood by others. He did some great work this week!
Jojo was Mr. Giggles at therapy today. It is so nice to see him like that since he is soooo serious most of the time. Jenny is started to be a little tougher on him when it comes to clarity. She is not letting him get away with not hearing EVERY sound in a word anymore. We are thrilled how much he is starting to talk......lots of phrases and some sentences now. It is also very frustrating because unless it's a single word or short phrase, we are having lots of trouble understanding him. Oh, it is so hard because I ask him to repeat himself a few times and then he is frustrated, and all the while he is looking at you knowing you don't understand him. Yesterday it was Lucky Charms he wanted and I heard "icky eems" over and over again. Today he was sitting on the step by the front door while I was getting my things ready to go. Instead of sitting on the step he wanted to wait on the rug. He said "on a ug" And while in a hurry to get out the door this morning it took a couple of minutes to figure out what he was trying to tell me. I am NOT complaining, yes it is better than him not speaking like before, however it is very time consuming and frustrating and another obstacle to overcome. The encouraging part is that his single words are getting more clear, so there is hope!!!
Yesterday when we were leaving Beaumont we walked by a lady near the entrance of the building and he said "scooze me" A two year old with such wonderful manners, I had to share!! It is nice to hear some of the things that go on in that little head!!! We passed my friend's parents house where I drop their daughter off after school and Jojo recognized it and said, "who dat house mommy?" He also has started yelling out "somebody help me!" once he is in bed for the night and does it every once and awhile until he falls asleep. No tears, just waits patiently for someone to fall for it! There is another story from yesterday at therapy, but it involves poop and wouldn't be nice to share. (it is funny though!)
Jojo has his first dentist appointment tomorrow. I have tried twice before and both times have had to cancel because he was sick. He is not sick all that often so that was an odd coincidence. I have a couple of concerns about his teeth. One of which is his tooth enamel is visibly worn away and his teeth almost have a translucent look on the edges. Since he has such bad GERD maybe that is why. We shall see.
Well our homework for this week is working on "W" sound again!! Also he is having trouble blending the "Y" sound "you" is "ooo" and blowing his air out for an "H" instead of "hat" he says "at" We also have to remind him not to drop those beginning consonants and other sounds. He cannot pronounce "L" or "R" yet so those words are still difficult to understand. "right here" sounds like "ite ah" but in the right context may be understood by others. He did some great work this week!
Friday, February 20, 2009
We are keeping very busy with therapy and appointments as always. His neurology appt was cancelled last week due to the doctor being sick. We are rescheduled for March. Jojo loved having Dominic home this week for mid-winter break. We have done some fun family things and enjoyed the break.
Speech progress has remained the same over the past couple of weeks. We are still working on his trouble spots and clarity. Now that he is starting to speak more spontaneously, (which I am thrilled about!) I am having to interpret more for him! Don't get me wrong it's not that he sounds awful, but unless you have some type of model in front of you to give you visual clues it can be tough. If he is playing with his toys I can tell what he is talking about because it is right in front of me, same with food and so on.........
His single words are pretty clear, it is when they are put together things get a little messy! I feel bad sometimes always challenging what he is saying but it has to be done. He will say "uck" and I say, "Jojo, is it "uck" or "truck?" and then he becomes a little more clear. He will say "tuck" (R is a later developing sound which he doesn't have yet) There are also other sounds he doesn't have yet. He has a tendency to drop some beginning sounds of words and switch some vowels sounds. That being said, I am still very happy with his progress and so so proud of him!
It is so much easier to look back and see how far we have come, and not focus on the work we still have to do. We are beginning the process of figuring out what we are going to do in the fall, in regards to his therapy and preschool. We just want to find the right place for him. Right now, I think we have decided we need to drop one of his therapy days very soon due to cost. It is just so expensive, I don't know what else we can do.
I can't believe how fast time goes by and that Jojo will be 3 years old in a few short months. Wow, what happened to my little baby?
Speech progress has remained the same over the past couple of weeks. We are still working on his trouble spots and clarity. Now that he is starting to speak more spontaneously, (which I am thrilled about!) I am having to interpret more for him! Don't get me wrong it's not that he sounds awful, but unless you have some type of model in front of you to give you visual clues it can be tough. If he is playing with his toys I can tell what he is talking about because it is right in front of me, same with food and so on.........
His single words are pretty clear, it is when they are put together things get a little messy! I feel bad sometimes always challenging what he is saying but it has to be done. He will say "uck" and I say, "Jojo, is it "uck" or "truck?" and then he becomes a little more clear. He will say "tuck" (R is a later developing sound which he doesn't have yet) There are also other sounds he doesn't have yet. He has a tendency to drop some beginning sounds of words and switch some vowels sounds. That being said, I am still very happy with his progress and so so proud of him!
It is so much easier to look back and see how far we have come, and not focus on the work we still have to do. We are beginning the process of figuring out what we are going to do in the fall, in regards to his therapy and preschool. We just want to find the right place for him. Right now, I think we have decided we need to drop one of his therapy days very soon due to cost. It is just so expensive, I don't know what else we can do.
I can't believe how fast time goes by and that Jojo will be 3 years old in a few short months. Wow, what happened to my little baby?
Wednesday, February 4, 2009
I have so much to update, I hadn't realized it had been so long. Last week was a sick week here. Dominic started with a mild fever and a runny nose and then a few days later Jojo followed suit. He started with a fever and a horrible cold and then it turned into croup. That meant many sleepless nights and many breathing treatments.Thank goodness everyone is feeling much better now. I did have to cancel Jojo's dentist appointment because he was too sick.
Jojo finally got to see the orthotist to check how his braces are fitting. He said that they still fit fine for now and he will see him again in 3 months. He really should be wearing them more, I already knew that. It just isn't to comfortable for him when he is playing and keeps sitting down and getting up. They don't allow for much side-to-side movement in his ankles.
He has really been making some nice progress at speech. He is saying more and more phrases now and even some short sentences. He still has trouble with a lot of multi syllabic words and with clarity once he puts simple words together. I have heard a couple of really good statements come out of this kid! I about fell over when I heard some of these.
"Daddy told me that." "I star wars six Luke." "My big boy bed." "Bob the builder, yes we can!" "Rolley my favorite guy." " I no like monkeys" and my personal favorite........."dirty with boogies."
When Joseph refused to put his coat on the other day, I asked him why and he said "dirty" I asked "dirty with what?" and "dirty with boogies" was the answer. I saw nothing dirty on his coat but let him wear a different one anyway.
Yesterday, he was very clingy at therapy. He had a more difficult time participating because he just wanted Mommy. Kendra had to ask me a couple of times what he was saying, which was kind of sad, because that usually doesn't happen at therapy.
Today he did a little better but had a lot of clarity issues that he hasn't had in quite a while. We decided he probably was just trying to get back into the swing of things after being sick. His answer for many things, the famous, "a-dah" was quite prevalent today. Jenny is not letting him get away with that anymore. She said that is his "safe" answer and is used as an avoidance tool to get him off the spot with his speech. So each time he said that, she made him say, "I don't know," just to have something to say. We have lots to keep working on at home.
I am very encouraged by his progress and have really been trying to encourage him and build his confidence up. He is still very hesitant to speak in front of others, probably because they usually ask us to interpret what he says.
It has been one year since he started his speech therapy. I am so proud of how far we have come!
Jojo finally got to see the orthotist to check how his braces are fitting. He said that they still fit fine for now and he will see him again in 3 months. He really should be wearing them more, I already knew that. It just isn't to comfortable for him when he is playing and keeps sitting down and getting up. They don't allow for much side-to-side movement in his ankles.
He has really been making some nice progress at speech. He is saying more and more phrases now and even some short sentences. He still has trouble with a lot of multi syllabic words and with clarity once he puts simple words together. I have heard a couple of really good statements come out of this kid! I about fell over when I heard some of these.
"Daddy told me that." "I star wars six Luke." "My big boy bed." "Bob the builder, yes we can!" "Rolley my favorite guy." " I no like monkeys" and my personal favorite........."dirty with boogies."
When Joseph refused to put his coat on the other day, I asked him why and he said "dirty" I asked "dirty with what?" and "dirty with boogies" was the answer. I saw nothing dirty on his coat but let him wear a different one anyway.
Yesterday, he was very clingy at therapy. He had a more difficult time participating because he just wanted Mommy. Kendra had to ask me a couple of times what he was saying, which was kind of sad, because that usually doesn't happen at therapy.
Today he did a little better but had a lot of clarity issues that he hasn't had in quite a while. We decided he probably was just trying to get back into the swing of things after being sick. His answer for many things, the famous, "a-dah" was quite prevalent today. Jenny is not letting him get away with that anymore. She said that is his "safe" answer and is used as an avoidance tool to get him off the spot with his speech. So each time he said that, she made him say, "I don't know," just to have something to say. We have lots to keep working on at home.
I am very encouraged by his progress and have really been trying to encourage him and build his confidence up. He is still very hesitant to speak in front of others, probably because they usually ask us to interpret what he says.
It has been one year since he started his speech therapy. I am so proud of how far we have come!
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