The new haircut

I decided he needed a haircut. (was starting to get called a girl again) So, the sweet little curls got cut off. Boo-hoo! (except for in the back I had her keep it a little longer!) He looks so much older!

Trick or Treat at Therapy

Jojo got to go trick or treating at therapy (MISD). He decorated a bag with pumpkins and stickers and then Miss Mary took him all over the building to trick or treat. Is he not the cutest Yoda ever? He had a tough time deciding which costume to wear that day because he also has an Elmo costume. He really wanted an elmo costume after we had bought Yoda, so Ama and Papa sent him an elmo costume all the way from Colorado! He wears which ever one he feels like wearing to all his Halloween events!! (His brother also has 2 costumes- Ben 10 for school and Anakin Skywalker for trick or treating)

Speech is continuing to go well. He is working as hard as ever. He is trying to say many single words and we are focusing on articulation of those words and trying to get him to use them spontaneously. He still is mostly quiet unless prompted. He is having trouble with the second consonant in many words, he drops it out of the word. Example "baby" comes out "bay-ee" "daddy" comes out "da-ee" and "puppy" "puh-ee". Therapists say that is common with apraxia, as is leaving out sounds, substituting sounds and leaving out whole words in a phrase or sentence. We are noticing now that he drops words...if we ask Jojo to repeat a short phrase such as "play with me" comes out "pa me." Obviously, he is not to the point of three word phrases yet, but that doesn't mean we don't have him try to say everything! His "ah-uh-ooo" (I love you) is my favorite thing that he says. I must tell him I love you 100 times a day, just to hear that back!

He went to feeding group at the Beaumont health center last night. This was a trial. The therapist had talked on the phone about how the kids in it are ages 3-5 and we weren't sure if it would be a good fit for Jojo. For numerous reasons too long to get into, we have decided to wait, work on many things were have learned from his previous OT and learned last night, and possibly join the next feeding group. They had the kids touch, play with and eat many different types of food. The first was Fritos....Jojo saw some other kids eat them, so he joined right in. The next was grilled cheese. He wasn't thrilled because he likes to eat his cut up with a fork, but he tried a bite or two. He also had to touch the food to his cheek and kiss it. Did not like those much at all. The last food was an apple. He wanted no part of touching it kissing or eating it. He got no where near it- except to throw it in the garbage!!! Was a great group of therapist and learned many great tips. He was exhausted and got home only 15 minutes before his bedtime. (part of our issue was the time of day group was) Not 100% sure, but like I said thinking we may wait until next session.

I also talked to his service coordinator at MISD about getting him into PT and OT since our insurance will likely not pay for him. It looks like we will try to add at least 1 session of PT onto our schedule, though it won't likely happen for 4-5 weeks.

We are going to get in touch with a liason from Dave's employer to help with our insurance nightmare. It seems to get more complicated by the day. More bills, wrong dates, denied claims-very stressful.

We have to do the kids pumpkins tonight, Dom has singing class, I have lots of work to do for Dom's teacher getting pages out of their workbooks, and getting all of the kids' stuff ready for Dom's halloween party tomorrow, including making a cheese and cracker tray! We will be a busy bunch tonight!! The kids are so excited for tomorrow......what a fun day!!!

Jojo only went to therapy once this week, he had a goopy eye and runny nose all week. The session he did go to went really well. He said a couple of new word approximations and made very good attempts at everything. His therapist said that she can tell we work very hard with him at home. (I'm glad that is noticed, cuz we sure do!) He also did not get to go to feeding group because he wasn't feeling well. He seems so much happier now that we can understand him a bit more. He is trying to sing along to songs he knows. He can get the last word in a sentence, though a bit behind. It is so precious. I can't believe his progress the past 2 weeks or so, it is amazing. Got another bill from Beaumont, this time it is for physical therapy during the month of August, the funny thing is he didn't have any physical therapy in August. He had occupational therapy and speech.......hmmmm somebody is a little mixed up. So we know how I will spend part of my day tomorrow speaking with my good friends at the insurance company.

Neurologist

Yesterday we saw Jojo's neurologist. He sees her every 3-4 months for his hypotonia and apraxia. At this check up I told her about my concerns with his hypotonia. (seems to be getting worse, posture problems, trouble with balance and steadiness.) She said as he is getting older and bigger, he is doing more and so it is more obvious. She did observe him and said she can tell he is definitely not as steady as he should be. The only thing we can do about it is, and I quote her, "therapy, therapy, therapy" She wrote him a script saying he needs PT and OT. Well here we go again, insurance most likely is not going to pay for it. She said to go to Early On and get it through MISD. I have to figure all this out because he is also supposed to start his feeding group next week, so my head is spinning trying to do all of this. I also got a surprise bill for almost $900.00 from Beaumont-that insurance was supposed to pay. Another battle on the phone with Blue Cross left me drained. We have what Blue Cross calls a dual contract and the bills aren't getting processed through the correct part of the contract. Apparently they don't know why this is happening so they told me I will need to do this every time I get a bill. (Call insurance and have them reprocess it through Master Medical and then wait for a check to get reimbursed.) They can't give me even a estimate on how long this will take. It is such a mess and a headache, I could scream. Well we have to make some decisions about therapy. I don't know that we can add 3 more sessions per week. We have so many things to consider. First always is what Joseph needs. But money, (paying for therapy, gas, copays etc.) and time, and our current schedule also play a role.

Some links about apraxia

Just wanted to share some links to some news stories on apraxia

http://www.wwaytv3.com/video/child_development_center_in_wilmington_teaches_children_a_second_language/10

http://www.sciencedaily.com/releases/2007/10/071029133114.htm

http://www.kare11.com/video/player.aspx?aid=48024

A little video clip

Yesterday was not the greatest day at therapy, but today went very well. He was a little bit silly today (which is rare for Mr. Serious!) but did great work! He had ants in his pants was literally wiggling the entire time, but Jenny went along with it and somehow got him to do what he was supposed to do. He is vocalizing so much more now. He is getting more confident and likes hearing his voice! Some of the difficulties with apraxia of speech we encountering more now, as he is making more sounds. It kinda sounds funny, but when you only make a few sounds, not that much can go wrong, it is the challenge of getting sounds out of him at all. The more complicated sound combinations become, the harder time he has....makes sense though. For instance he will drop consonant sounds when paired with vowels, or if he leaves the consonant sound he adds the wrong vowel. Example- the word "me" it can come out either "eee" or "ma." Then in some words he adds a sound to the beginning or says the word completely backwards. Example......today in therapy he was supposed to say "cup" and the first time he said "pup" then tried again and said "puck" (saying cup backwards).
I am so grateful for the progress he has been making.....it makes the days so much more enjoyable when we are not all frustrated! He makes me so proud!!!
This is another super busy week. We are finishing up redecorating Dominic's room, Daddy's soccer team is in the playoffs, we have a first grade field trip Mommy is going on, and Jojo has an appointment with his neurologist. I will update about that on Friday.

Wonderful progress

As I am sitting here on the computer, Jojo is next to me babbling while he is playing. No, I cannot understand a word of it...........but it is so amazing! It is one of the first times he is playing and not being silent!! He has had a remarkable couple of days. After what seemed a long rut of sameness, he is finally making noticeable progress. He is really trying to imitate and be more vocal and be included in conversation. He has amazing listening skills and you can see him processing everything others around him say, he takes in details and has an amazing memory. He has even seemed so much happier for the past couple of days. I know this is part of the roller coaster ride we will continue to be on with him, but right now we are heading up! The progress is not anything like an explosion of words, or even any new sounds, but something somehow is becoming a little easier for him. The sounds and word approximations he does have are coming easier, the hard work is paying off. None of this would seem very obvious to anyone but our family and his therapists, but to us it means the world and gives us much needed hope. He is answering questions now almost all the time with his words for "yes" (eh) "no" (nah) and "okay" (ah-ta). He has been trying to imitate us sometimes when we say something and even making spontaneous vocalizations more! These little things are HUGE for him and for all of us. It has me emotional, but in a good happy way!!! He also told me to "ga ma-ma" when he wanted me to go in the other room. (that took about 20 seconds for him to get that out after some groping and very good attempts) It doesn't come easy, so when it does it is soooo sweet!

Therapy was good today. He worked hard and did well on his VC combos and CVCV combos! We even heard one time the word "up" spot-on! (instead of "pup" or "bup") He drew a picture of mama, dada, Jojo (he calls himself "ga-ga") and da (Dominic). He even drew Miss Jenny his therapist and put purple on her because she had on a purple shirt. He is quite good at drawing!

****The picture is so cute because that is his brother's treasured Ben 10 shirt and he let Jojo wear it to bed!****

My Chance to Dance

Today we had therapy at Kaufman Center with Miss Jenny. Jojo was a rockstar today!!! He was very cooperative and had lots of good sounds coming out of that little mouth today. He tried some new cards today that combined a vowel + consonant sound bay, bee, knee are a few of the ones he tried. He sometimes gets the first sound but then drops the vowel or changes the vowel the word bee comes out ba. We have to add it to our list to practice at home. He also said "oh ba!" for "oh boy!" which is on one of his cards. It was soooo exciting to hear that!! It sure does get tiring for all of us.....(especially him!) prompting or cueing him to say every single sound or word we want him to say. But we can see him improving so it's sooooo worth it!

After therapy today we drove to the MORC for an "early on" event called "My Chance to Dance" It is for all kids enrolled in "Early on" which is the birth to 3 early intervention program. Jojo absolutely LOVED it! I haven't seen him that happy and excited in quite some time. It truly made my day, even made my week in fact! He was dancing to the music and following along with the teacher and following directions like a champ! Mommy even got some nice exercise! It is wonderful to do these things where he isn't on the spot or pressured and can enjoy activities with other children. The teacher would ask all the kids their name and none of them could (or maybe just wouldn't) say anything. It is nice when the focus is off of his disabilities and it's just time for fun! Everyone fits in and no one is judging! I think I'm just so used to so many therapy sessions and doctor's appointments that it was nice to do something with him that was just pure fun! There is a dance class for special needs kids which I may sign him up for because he loved it so much!

On a different note, we are going to do the feeding group at Beaumont. OF COURSE insurance doesn't cover it, what was I thinking? LOL But, we have decided it is definitely worth the money to try!! It will last nine weeks and start at the end of October. I am excited that Jojo will get to wear his Halloween costume to therapy every day the week of Halloween, usually you only get one use out of it! He loves to dress up.

I'm so proud of my baby! It feels good to have a good day!

The Little Stinker

For the first time Jojo has been a little stinker at therapy two days in a row. I thought yesterday was a fluke but then he did the same thing today. I can't believe it is ONLY Tuesday, the past two days have thoroughly exhausted me.........

Today Jojo came into Kendra's room and sat in the chair and when she started to talk to him he put his head down and twisted his body so he wouldn't have to look at her. She was asking him to talk and he refused and was kind of grunting and saying "Maaaamaaaa" He acted like she was a complete stranger who was asking him to do horrible things. We both sat there and shook our heads at him then decided maybe he had to poop. We let him stand up and he was better, he then started doing his "work" (talking) and playing. He never did poop although we thought that was the most logical explanation for how he was acting. He just wasn't all that cooperative today. Hmmm....is he going to start acting like a two year old now?!?! LOL
After that session we went over to MISD for speech with Miss Mary. He gets to play more there and it is a little less structured and he acted like his usual self.
He is making significantly better ooo and eee sounds and is starting to request things with word approximations instead of just pointing or signing. He doesn't have any more words yet just working on the same things as always, animal sounds, up, down, open, more, go, colors, hi, bye, I want, me and things like that. He still needs word for word cues to say most things. For example I will show him a picture of an apple and say "what is it?" He will then usually just look at me until I say "ah" and then he will say "po." Learning how to initiate a word is quite a challenge! He is still really having a tough time getting those vowel + consonant combo's but the consonant + vowels combo's are beginning to get a little easier for him! Yeah! So proud of him, he works so hard.