Another visit to the doctor....

Yesterday Joseph got bit by a spider (we think) right after he got dressed in the morning. He immediately pointed it out to us and was itching it. It really swelled up and was very red. It went down after about an hour. This morning when he woke up it was worse. We made an appointment with the doctor in the afternoon. It was indeed a spider bite and the doctor gave us a steroid cream to put on it to help it heal.
Meanwhile his older brother Dominic had a serious allergic reaction to something. (We are still not sure what.) He had a sneezing fit about 20 sneezes in a row. The great big ones!! Right after that his eyelids looked like he had on purplish/pink eye shadow right up to the eyebrows. Then the eyelids started to swell so badly that they look like they were halfway open. I gave him Benadryl and put him in the car (we were on the way to doc with Jojo anyway) thinking he was going to urgent care. Dave took Jojo into doctor and I waited in the car with Dominic in case he wasn't getting better. There happens to be an urgent care in the same medical building where Jojo was going! The good news is the benadryl worked and he was looking better after a little while; the bad news is we don't know what triggered this.

That was probably a bit confusing, but everyone is fine and we made it! LOL That made for a busy day considering we also had a therapy session this morning! Joseph made an "eee" sound for the very first time today during speech! He played with play-doh and cut out animals shapes with it to work on animal sounds. He also went fishing for flash cards and worked on those sounds.

Song to share

I just wanted to share this song. When I hear it I think of my children. So, I dedicate it to them. All of the parents I'm sure will feel the same way!

http://music.aol.com/song/my-wish/7562200

Jojo did very well at therapy today. He learned the signs for red, green (his favorite color), blue and yellow. They worked a lot on saying "me" but we are struggling to get just an "mmm" sound out of him on that one. He has also started to do some work with the Kaufman cards which are cards with pictures to cue his speech. The word is broken down from a basic sound and then he will continue to build on it. He is very proud of his talking as well as signing. He is now saying buh-buh for bubble and has a huge smile after he says it. Yeah! We now have four words; mama, dada, ba (ball) and buh-buh (bubble). He still prefers to sign most things rather than use his voice. He signs; more, please, thank you, cracker, cookie, drink, all done, dog, ball, train, bubble, car and the color green!
He still won't go anywhere near milk:( So, as my neighbor suggested, we are now giving him calcium bears! (they are a calcium & vitamin D supplement that tastes just like a gummy bear). I didn't think he would eat them but he proved me wrong. I also found some gummy fish that are omega 3 supplements. In addition he has been on a multivitamin because his iron is low. I feel a little better with him on all 3 of these since he eats so poorly. Big accomplishment for the day is he tried 3 bites of a dehydrated apple. I couldn't tell him it was apple or he wouldn't go near it. I broke it into a teeny piece and told him it was a marshmallow. (It was the same crispy kind of texture of the marshmallows in Lucky charms cereal, which he likes). Very nice find at the store by Daddy. We have tried dried fruit, with no luck because he doesn't like the chewy feel of it. Dehydrated is crispy. I'm keeping my fingers crossed........a couple bites is better than nothing! He was wiped out tonight because he had only a short nap in the car on the way to therapy.

Trampoline

Yesterday the trampoline that we ordered for Joseph came. This will be helpful for his PT and OT. It will give his muscles a good workout and strengthen his legs. It will also be good for what is called "heavy work" in OT. Movement such as crawling, lifting, climbing, pulling and jumping provides input to the receptors in muscles and joints that then provide calming input to the body.(Think of rocking a crying baby to calm it) Developing brains crave this movement and it helps regulate their sensory input, whether it is hypo-responsive or hyper-responsive. Some kids have a mix of both. Joseph is tactile defensive which means he is hyper-sensitive to touch. (No messy hands, no bubble baths, no bare feet on grass, no sand etc) He also loves to bang and bump into things or people! (for which he needs calming) He jumped on the trampoline last night; and it may or may not be coincidence but he slept in an hour and a half later today! Well anyway.......he is really enjoying it.......so is his big brother!

Long post today!

This morning Joseph had an appointment with the dermatologist. She wanted to check to make sure his feet have healed well since his outbreak of palmoplantar eczema a few months ago. (He gets fluid filled vesicles on the soles of his feet and then it turns into cracking and bleeding.) He did so well. We are going to try a new cream on his skin to prevent the bumps he also gets on his legs and face. The hard part was in the waiting room. For 30 minutes we were sitting next to a little boy who was talking up a storm. Our kids looked about the same age, I asked the mom, and indeed they were only 2 weeks apart. My Jojo should be able to do that, I thought. I had to keep telling myself.......we will get there and the little things will mean so much more because of his hard work.

Daddy took him to the Kaufman Center for speech today. He said he worked very hard on signing and sounds. They are breaking down words into a couple of sounds that will be the easiest way for him to learn. Hard to explain, here's an example.......instead of grunting or pointing when he wants to get down from somewhere, he needs to say "d" sound and "n". It sounds like "duh-nah" Once he can master that, then he will add the "ow" sound. Right now he cannot yet combine the two sounds. He can get the first, but not very often the second part. But the highlight of the day is when he came home and his daddy said, "say hi to mommy" and Jojo said "ha-mama" instead of waving. No I didn't misspell hi, it comes out ha, but it was the best thing I have ever heard him say! He has the cutest little voice! It sure made my day! I was on the phone with my Mom and she got to hear it too!

We did have quite a horrible battle with food today. He had oatmeal for breakfast, lunch and dinner, and a stage 2 baby food fruit cup and one yogurt in between. He refused the lunch and dinner that we were eating. He has also refused milk for the past 4 days. He will not go near it in a bottle, cup, warm, cold or chocolate. His nutrition was horrible before and now this. When he doesn't want to eat or drink something he will grab his face with both hands and squeeze it, including his cheeks, eyelids or lips........oh how we battle with food.........

check this out!

Watch the video shown on this link. This is where Jojo gets his speech therapy.

http://www.nss-nrs.com/cgi-bin/WebObjects/NSS.woa/wa/Seminars/detail?id=1000836

First day of speech at Beaumont

Jojo had his first day of speech today at Beaumont. He did so well, I had tears in my eyes the whole time. He really had an "on" day and used his voice to say "ba" for ball which is HUGE!! Yeah Jojo! Way to go!

ENT visit

Today was sure a busy day. Jojo had an appointment at the ENT this morning. His tubes are working their way out of his ears the doctor said. He said that their is a 20% chance that once they fall out that his ears will fill with fluid again. If that happens he will need to have a new set put in. As far as the laryngomalacia goes we should continue to monitor his stidor, and hope he outgrows it. The hope was that he would by the time he was 2, but that didn't happen. He said to continue to watch him for apnea and he will see him again in 6 months.

This afternoon he had speech therapy at Kaufman Center. I am going to have to get used to two hours of driving for a half-hour session! Luckily, he napped on the way there. He did very well separating from me for the first time. (I watch and listen through a two-way mirror with a speaker.) He learned a couple more signs today and used them very well. His SMO's (braces) came today so we will be going to get new shoes that will fit him with the braces. I added a picture to show what they look like. His aunt and uncle and cousin Kaitlyn stopped by for a visit also. So he sure fell asleep quick tonight. Up and at it again early...therapy awaits. Just have to share this........After each session of therapy I ask him, "who did a great job today at therapy?" He always points to himself and says "da" and then he points to me and says "da". So I guess we both did! Isn't he the sweetest?!!

1st day of speech therapy

We made the decision to start private speech therapy at the Kaufman Center in West Bloomfield. It has a wonderful reputation and I'm very excited about starting there. Unfortunately, our insurance doesn't cover it, and it is not cheap! But anything to help my little guy. It took about an hour to get there, as we learned there was major construction in the area. Joseph will go twice a week. He had his first session today and learned 9 new signs. If he can't yet use a spoken voice, he will use sign language. His therapist was a great match for him and he warmed up to her right away. He caught on quick to the fact that she wouldn't give him things until he signed for them. I was proud.
We have to start making things at home a little tougher for him by making him ask (sign) for things, even though we may know what he wants. She said that it is important for him to learn to communicate so that even people outside of his immediate family can understand what he wants or needs. It's still emotional for me each time he goes to therapy....hard to see him struggle. Whew....our therapy week is over. Fridays are a free day!

Where we are today....

My little guy is such a hard worker. He tries and tries and never gives up. He is becoming increasing frustrated because he realizes now no matter how hard he tries he cannot talk. He says mama and dada and everything else is "a-da". He cannot imitate sounds or even smile on command. He is using some sign language approximations and I have also made many picture boards for him to use. We are still having sensory issues particularly with food, sand and grass. He is tactile defensive so some touch is painful to him. We are still brushing him to reduce this sensitivity as the OT recommends. We also do joint compressions and use deep pressure. He is still on the Prevacid, doctor was afraid if we took him off he my start refusing food again. He should be getting his braces very soon for his ankles and feet, they are already ordered. This will hopefully help with his stability and balance. The past month of physical therapy have REALLY made a difference, he is getting stronger every day. Both of his PT's can't believe his progress.

To catch you up........

A recap of the past 2 years........

Joseph born May 14th, 2006 (Mother's Day)

August 2006
Jojo had what is called stridor (high pitched gasping for air type of noise heard when he would inhale) ENT diagnosed laryngomalacia,(floppiness in the cartilage in the airway specifically the voice box) acid reflux, fluid in both ears. He started him on Zantac for the reflux and said we would monitor the laryngomalacia, he may outgrow it.

November 2006
Jojo was sleeping horribly. He would wake 6-7 time per night from now until 7 or 8 months from now. Still fluid in ears, still having stridor.

April 2007
ENT still concerned with sleep problems, suspects apnea. Overnight sleep study confirms both obstructive and central (nervous system) apnea. He was stopping breathing 9 times per hour. Scheduled for surgery.

May 2007
Surgery at Children's Hospital. His adenoids were removed and tubes were placed in both ears.

Summer 2007
Sleeping issues starting to get improve. Still something wrong, he doesn't seem comfortable and we are battling with him to eat. There is a lot of choking, gagging etc. He is now losing weight.

Fall 2007
Decide to see a pediatric gastroenterologist. Orders a whole battery of tests and schedules more procedures. He will have a gastroscopy and colonoscopy with biopsy.

December 2007
Has procedures done at beaumont. Dr. finds he has horrible erosions from acid in his esophagus and some allergic disease in his small intestine. Starts him on Prevacid very large dose twice a day.

February 2008
I've been noticing for some time weakness in his legs and his unsteady gait when he walks. Falls down and gets hurt frequently. Also has been concerned about his lack of verbal language. He says mama and dada and makes very limited sounds. He is very quiet and has a very serious look and his face. We notice he also doesn't keep his mouth closed much, it hangs open. We decide to have him evaluated at Early Intervention. His language understanding tests far above his age, however he is almost 2 years old and his expressive language is in the 9-12 month range. It took 3 seperate hearing test appointments before he was cleared of conductive hearing loss problem.
He will start speech therapy 2 times per week and a feeding group once a week through MISD.

Spring 2008
He is finally gaining weight. He has an appointment with a pediatric neurologist who confirms my suspicions. He is diagnosed with hypotonia (low muscle tone) and a neurologic condition called apraxia. He is scheduled for an MRI which be needs general anesthesia for and another whole round of tests, and bloodwork. Whew. Here we go again. MRI is normal, thank God! He is at therapy 3x per week and is now going to be evaluated at Beaumont for therapies as well. The results of that evaluation are the same as the previous. He will need intensive speech therapy. We are put on a waiting list at the end of March. He will also need physical therapy and occupational therapy.

June 2008
Joseph started PT 2x a week and OT 2x a week. We are still waiting on speech.

July 2008
Joseph will likely begin to go to the Kaufman Children's Center for speech and language which is in West Bloomfield soon. We are going to have pay out of pocket since our insurance will not cover this facility. (I'm still working on that!) We are still waiting on Beaumont to get him in for speech, however the Kaufman center specializes in children with apraxia. We have a decision to make. Where should he begin his speech therapy?

So in addition to his 4 sessions of therapy per week in Royal Oak we will go 2x per week to West Bloomfield. He is by far the busiest two year old I know.