Happy Mommy!

I just wanted to give a quick update to the blog. Jojo has been still going strong with imitation skills and some spontaneous 2 word phrases such as help please, mama go, all done, and hi (someones name). We are still working on clarity of many of his words but I'm sure that will come. I am really, really enjoying each day with him now. (I know that sounds horrible, but the first 2 years were not exactly easy for us!) He is so agreeable, laid back and HAPPY! No terrible two's for this guy!! It seems whatever I tell him his response is "ah-tay" (okay). We are going on new adventures every day together! He is a completely different child the past 2 months than he ever was! It is so obvious how much better he feels health wise, not to mention the fact he can communicate so much better with everyone now. I think back now and understand why he never quite seemed happy or like he felt good......he couldn't eat because of erosions in his esophagus, he couldn't sleep because of GERD, floppy cartilage in his airway, very large adenoids and sleep apnea (he stopped breathing an average of 9x per hour). I also have to add that it doesn't make for a happy mommy or daddy getting up 6 or 7 times a night! He also continuously had fluid in his ears for about 8 months. Looking back on all of that (and more) I am so thrilled and relieved with how far we have come. He is still followed by many doctors for his issues but we are so grateful to have a lot of this behind us. I can't express enough how happy I am with Jojo's progress. He is such an amazing little boy. (and darn cute I might add!!) I am so blessed!

Jojo has still been making steady progress and we are thrilled! All 3 of his speech therapists are amazed how quickly he is progressing! Speech 4x a week and our daily work at home are really paying off! We know we still have a long way to go, but we are certainly enjoying each new word and even a couple of two word phrases. We love to listen to that cute little voice trying out new words all the time. My favorite is something he said to my Mom last night when she asked him a question, he said "ah no-no" for "I don't know." This morning after I dropped something and said "oh crap" I hear a little voice behind me saying "ah-cap" and giggling and then saying it over and over and over. Guess I better remember he can now imitate me! He definitely seems sooooo much happier and less frustrated now that we are able to understand him better. We are so happy for him.

In therapy they are working still on naming actions, putting two words together and also still reinforcing single words and different consonant and vowels combinations so that he does not lose what he has already learned. He is still also working on clarity of some of the words that he does have. There are some sounds which he doesn't have at all yet but they are typically sounds that come later anyhow. He can't pronounce l,y,w,f,v,ch,th,x,z,q,r but then again a lot of 2 1/2 year olds can't pronounce those either. He has had some success with longer words that change the vowel and the consonant. He cannot yet end his words with the "n" sound which really changes the sound of the whole word. "Green" is "geet" "on" is "ot" etc.

He has an appt with a pediatric opthamalogist in January due to a blocked tear duct that keeps giving him trouble. When most kids are wiping their nose he is wiping his eye because it is so watery and runny. We have tried the standard treatment which is warm compress and massage, but have had little improvement. It always looks like he is tearing up because the tears don't drain properly. He has an appointment with his GI doc two days before Christmas and an appointment with an orthotist to assess how his ankle braces are working/fitting on the 19th.

LONG

Well last week Jojo had his PT evaluation at MISD. He struggled with some of the age appropriate skills such as jumping off of things, doing stairs independently and alternating feet, and getting up off of his back the proper way. He was more at the level of a 20-24 month old than a 30 month old on these skills. He also cannot get up on his toes because his feet are too weak. The outcome however was that he did not qualify for free services based on his score that they calculated. In each area he needed to get at least a 6 and wouldn't ya know it he got a 7!!! We just missed getting in, we will just continue to work on what we needs help with at home and go from there. If I feel that he still needs additional help we will just take his script we already have and go back to Beaumont. That will just complicate things as far as insurance goes, but we will see what he needs. I do have to comment that Joseph does have some really great skills the PT also noted. He throws and kicks very well. (great, right? isn't that what every mother hopes for? LOL)

Therapy this week focused on increasing his vocabulary of single words and starting to work on some 2 word phrases and actions of objects. For example he is shown a phone and he needs to be able to answer what we do with a phone---talk. This is very new to him and so he had a tough time at first. Once he gets someone to model a word for him he is able to imitate it I would say about 80% of the time. We are still trying to get him to say more words spontaneously, but he is getting better every day. Sometimes between Dave, Dominic and I, one of us is able to understand what he is saying, if the others don't. We are told by his therapist to try to wait him out when he wants something, but says no words for it. In the end sometimes we have to give him a model because he doesn't know how to initiate the word. Today at therapy he had a new set of word to try and they were the most difficult yet. Some of them were: tomato, potato, bandanna, poodle, and other objects. They were very complicated words for him and even with a model, they didn't sound close. I am looking forward to the progress on the new words just as he had on the old ones. One of his therapists suggested I teach him 5 new words a week and try to get him to say them many times a day until he can use them without us giving him the model. Then hopefully, they will become part of his vocabulary. The other little things we are working on are "w" sounds and the "nee" sound still. (bunny, money, honey etc)

I hope that makes some sort of sense. I have a million things in my brain today! It is one busy week! I'm wondering tomorrow for Thanksgiving what this child is going to eat. I can't think of one single thing that will be on the table that he will eat. Oh wait bread. Woo-hoo! He won't even eat the best part-pumpkin pie. He has never tried a bite of pie of any kind. It sure must look scary to him!!!

I hope everyone has a nice Thanksgiving tomorrow. I know I have a million things to be thankful for. I couldn't have asked for anything more wonderful than my amazing boys, husband, parents, siblings, aunts, uncles, cousins, family and friends. On the long drive to therapy today, the boys were holding hands while we were driving there and Dominic said, "Mom, tomorrow is Thanksgiving and we are holding hands because we are thankful for each other." Bless his heart. It doesn't get any better than that!!

Here's a video update! He really has been working hard. Some days it is still very overwhelming, but we are encouraged by his progress! Once things settle down this week I will update more thoroughly. (I've had Dominic home sick since Friday, that good old viral induced asthma kicking in again!) Dominic home sick means no therapy for Jojo so hopefully he can go back to school tomorrow! We have speech tomorrow and a PT evaluation on Thursday.

Jojo has started a new set of cards (words to work on) at the Kaufman Center. We are now trying words such as penny, dirty, muddy, happy and bunny. We have a list of about 30 words to work on this week. He recently started to call his brother Dom-eee. We all use that as a nickname for Dominic. He went from calling him Da to Dom-eee. It's very cute. The two things that we were working on the most at therapy so far this week are; again the second consonants in daddy, mommy, puppy, bunny and working on the "n" sound in the middle and end of words. He can say it most of the time on the beginning of words such as "no." When it is elsewhere in the word he turns it into a "t" sound. "On" becomes "ot" and "down" becomes "dot." He said a two word phrase spontaneously twice today during therapy. "More ball" and "put on." His accuracy on spontaneously naming objects with single word approximations was near 80% for the past two weeks Kendra told us. That means when shown an object, 80% of the time he tries to say what it is. (even if it is only a good attempt!) That means we have made great progress and will try even harder things next week. Well three sessions down, one to go this week! Next week he has an appointment for another PT evaluation. He is going to start going once a week to PT again. Still waiting to be reimbursed by our insurance company for his bills at Beaumont. Apparently Beaumont billed for the wrong therapy, billed speech when it should have been for PT, so insurance won't pay until that is fixed. His 60 consecutive days are up for insurance coverage for speech so now we have to start paying 20% of each visit to Beaumont and insurance doesn't cover treatment at the Kaufman Center at all. I am just so thankful that he is making progress, it is all worth it!!!

Go, Jojo, Go!

The past two days of therapy have been very encouraging. He has imitated a couple of two word phrases such as open up and open box. (with approximations but they sounded close!) On Monday we finally got him to say the second consonants in the words puppy, daddy and mommy. The only way he got them in was when Jenny would take his hand put it on her lips and have him feel the sounds as she said them. Then when it was his turn he had to touch his hand to his mouth and imitate her. He did it and it was very exciting for all of us! She hugged him and told him how proud she was of him! He hasn't been able to do it again since therapy yesterday, but eventually it will come! Today he fell asleep on the way to therapy.......he must have been tired because it was only 9am! (The boys have both been getting up a few minutes before 6:00 in the morning!) Kendra was really impressed with his progress over the past two weeks. She didn't see him last week, she was off on Tuesday. She couldn't believe how much he has improved in just two weeks. He was having trouble with the 'n' sound today, he wants to make a 't' sound. She would touch his nose to try to get the 'n' sound out. The most important part is to keep working at home with him, his therapists can tell that we do and it makes a huge difference.

Here's Elmo!