Dr. Belknap visit/conferences

Today Jojo had his checkup with Dr. Belknap his GI doc. He said he has come such a long way from when they first met over 2 1/2 years ago! He wants him to continue on the Prevacid every other day. That is a big change from the twice daily he used to be on. He wants to continue to monitor him but only about 2 times a year instead of 4 times a year. This sure helps Mom out with all his therapy and appointments he goes to!!! He still sees the neurologist every 3-4 months and the ENT every 4-6 months. He actually has an ENT appt next Monday! Dr. also suggested the possiblity of him seeing an allergist. He has had a chronic runny nose/constant colds. He has missed countless days of school because of his faucet nose. Never a fever, no other symptoms and the rest of us aren't getting sick......so we are thinking he has some sort of terrible allergies. He asked if allergies run in the family.......I laughed and said "oh yeah!" Dominic sees the allergist quite frequently for bad allergies, asthma and eczema! I hope Jojo isn't headed down the road of daily breathing treatments, allery meds, eye drops, and skin creams........

He is still struggling with weight gain but as the Dr. pointed out he is probably just a lean kid! He is only between 5-10th percentile at 29 lbs. He is getting taller though. He is 39 inches up and inch or two from last time. He is just my little peanut! He is still in a size 2T for pants and some 2T and some 3T for shirts.

We had conferences a couple of weeks ago with Jojo's teacher. She said that she is amazed at his progress and already had to revise his goals on his IEP. She shared with us some testing they do on the kids and he scored Advanced and Very Advanced for every section in the receptive skills. She said he is a really really smart kid and that is both good and bad for his speech issues. She said even without knowing him back then she could tell how severely impaired he once was in communication. The good thing is that he is very smart and always knew he had a problem but the bad part is he is now hesitant to speak spontaneously (with the exception of close family and friends) for fear of not being understood.......even though he speaks well enough to be understood. She said the challenge is getting him out of that thought process/mindset but that is hard because he was so challenged for so long. She needs him to understand that yes, people will know what you are saying instead of just playing it safe.

He is still getting speech therapy twice a week during school as well as OT and PT. He also still goes twice a week to the Kaufman Center in West Bloomfield. He still has articulation issues and some word retrieval issues but continues to make GREAT progress!

The kids saw Santa yesterday and Jojo LOVED him. He started frantically waving to him when he saw him and then happily sat on his lap. When we got home he said "Mom I saw the REAL Santa Claus!" They are sooooo excited for Christmas.

Jojo is loving school!!! His teachers say he is a wonderful sweet boy and he loves riding the bus and seeing his friends. I am very pleased with his curriculum and all of the staff that works with the him. He knows all of his letters, numbers and many letter sounds. He can even write his name. He is getting speech 2x a week at school and also PT and OT.

He is still going to Kaufman Center twice a week and doing very well there as always. He loves to go see "his Jenny." He is still working on the articulation of y, w, l, h and combining some other sounds. He is becoming a little more clear when speaking slowly, but it can be difficult to understand him when he is speaking fast or when it is very lengthy.

A few weeks ago, Jojo split his lip open and one of his two front teeth slightly shifted. The dentist said not to worry unless the tooth started to change color and last week we noticed along the gum line was turning gray. Today he had to have x rays and the nerve is dead and will need to be cleaned out and filled in with filling and then he has a 90% chance the tooth will be okay. His dentist is concerned because the tooth is loose. If we don't do it the tooth will probably get an abscess and the tooth may fall out. So tomorrow we will be doing the repairs. Oh poor guy.....the dentist said even with the sedation and gas it won't be pleasant for him! He can't eat or drink anything until after his appt which will be tough for him! It will be a pajama and movie day afterwards since the kids don't have school! His teeth also have a lot of acid erosion which is surprising to see for a 3 year old he said. (from his horrible reflux) He actually sees Dr. Belknap this week for a GI checkup. I'm a little concerned about weight gain again. He is still only up to 29 lbs.

Jojo and Dominic LOVED Halloween this year. I will post pictures soon.

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.

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!

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?

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!

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!

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.

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!!!

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.

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!

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!!!