Today was Jojo's last day with Miss Jaimie. He brought her a flower and ran to her when he saw her. So cute. He did lots and lots of talking and has approximations (probably wouldn't be understood by anyone but us) for about 10 words now. He still is learning new signs and using them also. We try to make him say something with his signs. His Ama came to therapy with him on Monday and his Papa did today. He was very proud and liked showing them how he talks. It is very cute because he says pa-pa and he says Maaaa-ma for his Ama. It makes it hard to differentiate between mama (me) and maaaa-ma (Ama) but at least he is saying something!!! He adores them!

Today he said ba-ba for baby which is a new one! He is also starting to vocalize "nah" for "no" which is new in the past week! I will have to get his official scores from his therapist, but his expressive language is now hovering around 15-18 month old range, and his understanding of language is far above his age. When he was being tested they keep going until he gets 5 in a row wrong. She didn't get to stop testing him until he was in the 5 year old range. Wow! We couldn't believe it, we were amazed at how much he knew. One example was when she showed a picture of a banana, apple, orange and glass of water to him. She asked him which one didn't belong. After a thoughtful moment he said "wa-wa." Yeah Jojo! She will look at what he got wrong and calculate his score which I expect to be at least a year above his age based on watching him test. His therapist said because he is so smart and understands so much, that helps with his prognosis.

It was hard to say goodbye to Miss Jaimie, we will miss her. I did get to meet his new therapist Miss Jennifer and I immediately felt better. I liked her right away and told her a few things about Jojo while she was observing him in the two way mirror. Maybe the two most important things about his likes.......he loves Disney Cars and the color green! I told Jojo next time we would go to see Miss Jennifer and he nodded in agreement!

I am still amazed each day how difficult it is to learn something that comes so naturally to most. It is hard to see him struggle but thrilling to watch him progress. I can't wait to hear the words every mom wants to hear......"I love you" But while I am patiently waiting I feel those words every time he looks at me. I am emotional today. Lots of changes going on this coming week including my other sweet boy starting first grade......oh yes, I am tearing up thinking about it.

Our therapist is leaving (so sad)

Daddy took Jojo to Kaufman Center today and came home with terrible news.........his speech therapist is leaving after next week. I am very very upset and I'm sure Jojo is too. It was obvious that they adored each other and he looked forward to seeing her twice a week. I think the reason I'm so upset is that I guess I feel like she was the lifeline to helping him talk. Yes, I know there will be someone to replace her but it is scary not knowing how he will react to someone new, it will be a setback (small I hope). It is so important for him to be comfortable with someone because that is how he gets the confidence to perform (talk). Ugh, what a heartbreak. I really liked her.

Updates

Are they cute or what??

Here has how the week has been going.....

Monday at speech Miss Jaimie continued with his receptive/expressive assessment. We are still not done yet, hopefully Thursday. During the expressive testing she would show him a picture and say "tell me what it is"....some of the pictures were dog, cat, baby and spoon. Jojo's response was just to look at her. No attempts at speech at all. After his session we talked about that. He does not respond that way because he is being stubborn or because he doesn't know what the pictures are (that is how it would appear to someone who doesn't understand apraxia). He cannot find a way to initiate the speech without some kind of prompt. The message coming from his brain is not being interpreted by his mouth, tongue and lips. Sometimes I used to wonder if he was just not trying to imitate us, but now I know he actually cannot, no matter how hard he tries. When asked to perform the sound or word on command it actually becomes harder for him to initiate a sound. That is why what little speech he does have is hardly ever spontaneous.

Tuesday at speech Jojo had a few good "eee" sounds and a couple of good consonant vowel combinations. He got to go on a treasure hunt with Miss Kendra looking for flashcards and then when he found them he had to try to say the word.

Today was his last session of OT. He has made wonderful progress since the beginning. He will walk on grass now and on the cement. He is also not as bothered by being messy. (except for food that is still very much an issue) She is recommending he go into the Beaumont feeding program which would begin in September. I'm not sure of the cost or if it is covered by insurance but they will be calling us in the Fall to proceed. He will also see an OT in the fall at his preschool program through MISD. He may need to return to OT as needed if sensory issues get worse.

Busy boy as always!

Wow! This week has been incredibly busy. Just when I think we can't pack anything else into our schedule, we do! We must have had a million errands to run this week. I think that happens as the school year is approaching.........

Dominic had a playdate at the park with a friend and Jojo thought he was also 6 years old. He walked up to the boys, puffed up his chest and grinned the biggest grin I have ever seen. It was too cute. That smile disappeared quickly when Jojo wasn't allowed to climb on the huge play set the boys were headed toward. Having an older brother makes him forget that he is only 2! Oh did we have some tears....

Yesterday Jojo had an appointment with his gastroenterologist (GI doc). He has gained a 1/4 lb since May. Doesn't seem like much but he has gone from below the 5th percentile for weight (a year ago) to about the 10th percentile! Dr. said it is time to make the journey into life without Prevacid. (at least try to and see what happens:) Since he is on a maximum dose we will go from taking it twice a day to once a day. We will see the doc again in December and that is when we will be getting off the medicine completely to see how he does. He thinks a lot of his eating struggles are from having having pain for so long before (the erosions) and then the behavior formed a pattern and he also has sensory and texture issues with food. To summarize he thinks the problem is related more to behavior and less to the GERD right now. I totally agree. It was never pleasant for him to eat and he was in pain and that seems to have carried over to now. He is scared of food. We just have to keep evaluating him and keeping watching his weight to rule out more problems. The doctor was amazed how well behaved and cooperative he was. Especially since it was just about his bedtime. (our appt was at 7pm) Dominic also couldn't have behaved better, he had to come along because Daddy wasn't home.

Today Mommy took him to Kaufman and he had lots of hard work to do. His therapist spent the whole time doing an evaluation of his receptive skills. (He was so far scoring way above his age)We have to finish up that next week and then we will be evaluation expressive language. I'll post his results! We know what a smart little cookie he is, which makes it even more frustrating that he can't talk! It's amazing to see him bond like he has with his speech therapist. He sees her twice a week so I'm not surprised. He is always eager to go.
Hopefully this all makes sense, no time to proofread it.....family needs dinner!

Dominic comes with us on Tuesdays to speech, and that is a little distracting for Jojo. It's funny how totally different he acts with his brother there. Last week Miss Kendra took into her room by himself and Dominic and I waited in the waiting area. He had no trouble separating and she said he did super. I didn't do that this week though, because I wanted to watch him. I think I may alternate each week going in with him, then not going in with him.....until Dominic goes back to school anyway.

He said one word spontaneously today, "Ba" (ball) when he wanted to play ball. That is rare, so Miss Kendra and I were very excited! When asked what he wants to play he will usually just point to something or say "Da". We are still working on the "eeee" and "oooo" sounds which are very difficult and take many tries before we hear them. We are trying to combine a consonant with a vowel such as for the word bee saying "buh" and then "eee". This is very challenging for Joseph. Most of the things he says are just one syllable, and if the word is too long he gets very frustrated. It's the opposite of how you would think when you teach children to talk. You usually try to not use a "baby-talk" type of speech, but that is exactly what we do for Jojo to break it down so he can manage at least one sound in the word. For example when we ask him to say blue we say "Jojo say "boo" and pool would be "poo." Miss Kendra also praised Jojo for how well he communicates non-verbally. She said that he sure does try to make himself understood for others. He has the desire to communicate. Little cutie pie looked at her near the end of his session and signed "all done" and said emphatically "a-da!" He was tired and was ready to go!

I've been having a little bit of a hard time the past week or so. Everything seems so fine and normal at home, because we are used it and that's how it always is. I can tell that when we go out it is harder on him. We were at the mall the other day and the sales girl asked him how old he was. It was so cute as he struggled to manipulate his fingers (thumb and pointer in the shape of an L) to show that he is two. Then she asked what his name was and he said nothing, so she asked again....he said "da" while looking down. She then asked him something else and I said casually "oh, he is still learning to talk" and walked away. He is self conscious and will point at me to answer for him if he feels pressured. He is a smart little guy. It is also harder for me, having to answer questions, hearing other 2 year olds and the cute little things they say, and trying to ignore the fact that others look when he says " DAAAAH" and then "A DAAAH" for everything. I'm not trying to throw myself a pity party, but I'm also not denying the truth of how I feel. At the end of the day it's not about me, it's about him and that's what I remember when it gets tough. I try to imagine what he must feel like.

New word today!

Jojo slept the whole way to speech today at the Kaufman Center. He was very sleepy when Miss Jaimie tried to start the session! He was more quiet than usual because he was tired. She did get him to say a new word today.........."ca" for car. He was very proud. She told us to start a nightly routine with the whole family to work on exercises to strengthen Jojo's mouth. He will think it is fun instead of work, if we all do it. The sounds that come pretty easily are ah, da, ba and ma. The rest (including all the rest of the vowels) are still very difficult for him to imitate and rarely are they spontaneously used. For instance even though he figured out how to use his mouth to say "ca" today, he will not use it and we have to make him repeat it constantly all day so he can remember how to form that word tomorrow. Practice, practice practice. His big brother works with him all of the time it is soooo cute! He imitates what we do with Jojo. He is very patient with him and they play wonderful together!

The latest on the insurance mess....I am going to ask his neurologist if she will write him a new prescription with a new diagnosis code to see if we can start a new 60 day period over again. We may do this for PT and then for OT after those 60 days are up. So I need to call his doctor and then call the insurance company to see if they will pay for the new diagnosis. I'm not as concerned about OT because he will be seeing an OT for a feeding group once the school year starts at MISD. I have to have all of this figured out by Tuesday because they will no longer hold his spot for physical therapy. Gee......no pressure.

Jojo signing his colors!

I'm so proud of him! Way to go Jojo! He works so hard!

Mealtime

Here is a look at what mealtime in our house is usually like. Lunch for today was pasta, Mommy's homemade meatballs and mixed vegetables (baby food). All of these are foods that Jojo actually likes. (You can imagine the ones he doesn't) Before I started the video he ate 2 bites. It is hard to enjoy mealtime as a family. We can get very short with each other and snap at each other out of frustration. Jojo still sees a pediatric gastroenterologist and an OT for feeding therapy.

Insurance mess

Insurance issues are stressing me out again! Jojo has not had physical therapy in almost 3 weeks. Our insurance pays for 60 consecutive days for PT and OT. After that we have a 20% copay on each visit. His 60 consecutive days are up for PT, but in order for him to continue we needed our pediatrician to document it was a medical necessity. Okay, done. Next, we need to pay out of our pocket in full the $480 each week per session. (which totals $960 per week 1-PT 1-OT) Then we have to submit this information to the insurance company and hopefully get reimbursed the 80%. Needless to say........we cannot do this!!! So he cannot be seen unless we do this, according to the hospital's verification department. Even the copay on this amount wouldn't be feasible since we are already paying quite a bit of money for his speech therapy. The real kicker is that is that out of pocket cost for a session would be about $100.00 but, insurance can charge almost $500.00 a session. He still has a week or two of OT before his 60 days are up. We are working with insurance, Beaumont and therapists to work out something for him. I am not giving up easily.......I have seen the progress he has made with these therapies each week. Oh this should be a fun battle!