Time for school

Well it seems we have come to a decision what to do with Jojo in the fall. His therapist at MIPP went and checked out a program in Utica Schools designed for kids just like him, with apraxia or other expressive language disorders. The kids are all right on track cognitively and with their receptive language skills. It is is an ECSE (Early childhood special education) class however, the only kids in it are kids just like him. It is offered at one school and the teacher is actually a speech pathologist. She decides what kids would fit in it, there is a max of 12. It is called an AAC program (alternative augmentive communication). It is a class that will focus on speech and literacy. I have been told by many that kids with speech issues have a lot of difficulty with reading and writing. All of his therapists were in agreement that regular special education was not where he belonged, so until we found this program we had no idea what to do. We were thinking that we would just continue with his private therapy another year.

This program is not at our home school, however it isn't too far away. It is at Havel. (for anyone who knows Utica's schools) It kinda stinks that both my kids won't be at the same school.

Last week I had the IEP (Individual education plan) for Jojo. That was very exciting to find out more about the AAC program and meet teachers/staff, however it was also very emotional for me.

This has been an extremely emotional decision for me. After all he JUST turned 3, and in a few months will be gone every day for half the day. Quite different from when Dominic went to nursery school at age 3 for 2 hours 2 days a week. I am tremendously nervous about the adjustment for both of us. I am not ready to let him go yet. (I thought I had until Kindergarten to do that!) He will also be bussed to and from school, which is also hard to think about for Mommy!

When making any of these tough decisions, the thing I keep in mind is that I need to do what's best for Joseph and not make decisions based on how it makes me feel. I know how important this time is for his future and he needs to be in the best spot for his needs.

I am crying now just thinking about it, but part of me (very small part as of now!) is excited to see him thrive and take off in a new setting. It will definitely be a whole new world for both of us. Who knows maybe I will even eventually put my nursing degree to use. Maybe.

Birthday Boy!!

Jojo is 3!! He had a very happy birthday. We had a meeting with one of his speech therapists today regarding his placement for next fall. We went out to dinner, and then had cupcakes and opened presents with Ama and Papa. Jojo was very excited and Dominic was just as excited for him! Daddy took the day off today to go to the zoo with Dominic's class. They had a great time. It was a very busy day for all of us! I will write an update tomorrow on all of his appointments and how all of the therapy is going. Just wanted to share that it was Jojo's special day today and tell everyone how lucky we are to have such a sweet little boy!! He has started saying on a daily basis, Mommy eew boo-ti-foe (Mommy your beautiful) Love it! Oh, and of all his presents he opened up, his favorite was a book about little boys going on the potty and said "that is just what I wanted, this book." I thought that was so funny, maybe he will get into this potty idea after all.......

Sick,sick,sick

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.........

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.

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.

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.

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!