School

Jojo started his 5 day a week preschool last week. There are 11 boys in the class and one girl (poor thing)!! He had absolutely no separation problems, no anxiety and NO TEARS!!! I was the one crying like a baby!!! He knows what a big boy he is and really struts around his classroom. He rides the bus to and from school and he is so little his backpack goes down to the back of his knees when he is wearing it!

His teacher and parapros have commented on how confident, cooperative and sweet he is. We had his open house this week and so I got to learn more about his classroom routines and what he is learning. So far he LOVES school and that makes us very happy. He gets up in the morning very eager for the bus to come and tells me all about his day when he returns. The 2nd day of school he got off of the bus and was pouting and said "I want to go back to school, it was too short." He also told me he raised his hand and used his "man-ders" (manners)

We are still making the trip to West Bloomfield for speech twice a week. We have quite a rush to get him there in between Jojo getting off the bus and being back to pick Dominic up at 3:15. I think at some point we many have to cut down to once a week, which might be okay since he gets speech twice a week at school. He also gets OT and his teacher told me she noticed his weakness in his trunk area so she wants him to get PT eval at school as well.

I just received one of his interim reports from Kaufman Center and he met some of his goals from the last interim. He has now moved from a diagnosis of apraxia to dyspraxia. He is having difficulty with /h/ r/y/w/l/s/ and /s blends/ as a result he becomes increasingly unintelligible with an increased length of utterance. Many times even an unfamiliar person can decipher most of what he is saying, he just needs to start over and go slow. Last month he had a test administered to assess his expressive and receptive skills. His age equivalencies ranged from 3.8-4.8 yr olds so he is above his age which is great! The main goal is to work on clarity and length of utterance. We are so proud of him!!

He is now FINALLY able to sing along to a couple of songs if we go at a little bit slower of a pace which is so exciting. He also is singing his ABC's absolutely perfect!

We're back!!!

Wow. I did not realize how long it had been since I had updated! I guess that is what happens during the busy summer.....you lose track of time! We had our share of good things and not so good things going on the past two months.It seems everyone is getting back to healthy now. Just trying to keep a good attitude and get through.

Jojo has decided that he no longer wants to go to therapy because it is way too much fun with Daddy and Dominic home in the summer. This has made three mornings per week very challenging. He has cried so hard when we get into the therapy rooms that Mommy or Daddy has had to remain in the room a few times. This is very unlike Jojo who since beginning before age 2 was not at all apprehensive about going in alone. I think it is probably just one of those phases kids go through. He never had any separation anxiety before so I guess he is just doing it late:)

His speech has still been improving, both clarity and length of utterances. He still prefers to speak using one/two words unless we ask him to expand. However, many times he uses very long sentences to express very complex thoughts!! The big "apraxia" problem is that he sometimes cannot find a word or cannot get things out quickly because of the motor speech trouble. He still cannot sing a song and gets very upset when he is put "on the spot" to answer questions. He has some issues with word retrieval and sometimes needs a prompt.

He has started to pronounce the "w" in words somewhat regularly which really has improved the clarity of his speech. In therapy he is still working on that sound along with "y" and "h" sounds. His therapist says he also has what is called a lateral lisp (different from a regular lisp). She said he may have extra trouble with some sounds because he has an open bite. (his dentist made us aware of this at his first visit)

He is currently taking a creative movement class once a week. It is a dance class that focuses 2-3 year olds on moving to a beat, counting music and basic body movement. I thought that this was a good option for him. He still has some balance/coordination issues because of his hypotonia, this should be good for him.

I never updated about his 3 year check up. (can't believe he has been 3 for 2 months already!) Everything checked out fine.....but he still needs to try to gain some weight. He is only 28 lbs still. He has been for a while. He is about the 50th percentile for height (just right!) and he is about the 10th for weight. The most important thing is that he is still growing!

His pediatrician said to have his feet looked at again by a podiatrist, his feet are rolling in, the braces he had are too small and no one is monitoring this since he is no longer in physical therapy.

We had that visit this week. The doctor was a little baffled by his issue. The x-rays were normal. He doesn't have flat feet (as I thought) or any bone abnormalities. He probably has invertor weakness (muscle wraps around ankle) because of his low muscle tone. However as he watched him stand, then walk, then run he saw a couple of things. First, when he stands still, his feet appear normal. Once he starts to walk everything falls apart. He also agreed with me {no one else has yet (doctors/therapists)} that his left leg/ankle/foot is definitely worse than the right. He noticed his knees are hyper extended and that he seems to have some rotation of his legs coming from the hip. He is not sure what to do because he thinks if he wears braces that will help his feet/ankles but may not allow his leg muscles to get strong. So he wants him to go see a ped/orthopedic doc at Children's hospital for 2nd opinion. We go next week.

We are having lots of fun this summer and really enjoy all the time we are spending with friends and family!

The last 3 Tuesdays Joseph has been in tears when we get into therapy at Beaumont. He has been acting nervous and shy about being there, which is very unusual. Once he gets going he is fine but has been very slow to warm up there. On the contrary, he closes the door on me when he gets to the Kaufman Center with Jenny. He calls her "my Denny." We are still working on many articulation issues as well as increasing spontaneous speech. He has started being able to make the "w" sound during word drills but when he uses it in combination with another word or sentence he drops it. He does the same thing with the "y" sound. We are trying to get those mastered before we work on too many other ones. Jojo has started to get very upset if after saying something twice we still don't know what it is.

He is getting more and more confident around adults, but he is still hesitant to talk much around other children. I am still working and working on trying to sing songs with him, which he still has never been able to do, though he knows the words. It is just too fast and takes too much motor planning to get there yet. He gets very upset if you even ask him to sing with you because he knows he can't.

Since turning 3, he has been growing very much more independent (as he should!) He wants to do everything himself and tells me he can do it because he is a big boy! It is great that he has such a wonderful older brother as an example! The only trouble with having the older brother is that, of course, he wants to only play what Dominic does....Star wars, Bakugan, etc...

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.