|Diagnosis||Distal 10q 25.3, de novo|
|Parents||Jodie and Chris Smith|
|City||Redford, MI. USA.|
When he was born they thought that he had Downs, but they did the chromosome testing and when he was 4 days old we found out that he had Trisomy 10q. They tested both me and my husband and neither of our chromosomes were effected. We began going to the Genetisist when we was 2 months old and at that time we were told that their was only about 35 documented cases of this and none of the children documented had exactally what Josh had. Medically speaking Joshua has been healthy (Thank God). He has been wearing glasses since he was about 17 months old. He had 3 eye surgeries. 2 for his strabismus and 1 to try to correct the ptosis (drooping of the eyelid) of his left eye. He had very poor muscle tone at birth but that has improved greatly. He started crawling when he as 14 months and he was walking with a walker at about 2 years old. He stopped using his walker right before he turned 3. He is small for his age, but he weighs 39lbs. He loves to eat but he has a pretty good metabolism so it doesn't really show! haha. He loves dogs - all of them except his own. He really remembers names and people he meets. He must ask me 10 times a day to put Jess back on the computer he loves to hear him talk.
Josh has three big brothers. Jacob is 11 and he can never get enough of Josh. Him and his buddies take Josh all over for walks. Ryan is 8 and is very protective of Josh. He's like his minnie body gaurd. And his other brother Justin is up in heaven. He passed away almost 10 years ago. (He was 4 1/2 months old) he was born with a congenital heart defect. We were unaware of it until we as just over 2 months old. He had open heart surgery at 3 months and was is the hospital for 4 1/2 weeks before he passed away. But we have told Josh all about him and when we go to the Cemetary Josh blows him kisses.
Josh is partial trisomy 10q. His chromosome was effected at 25.3 then it mirrored itself and stared again from 25.3 and went down to 26.3.
I read about Jess's asthma and his nebulizer. Josh does too and we have the good-old nebulizer too. We had to laugh when we read the part you wrote about Jess being able to hang from a clothes line at 6 months because we was so strong. Josh although he had the poor muscle tone could hang from out fingers or what-ever else would hold him off the floor forever. He still to this day climbs like a little monkey.
He has taught us so much in life, as we know that Jess has no doubt taught all of you. They truely are miracles and special doesn't even begin to describe them. We are planning a Birthday party for Josh (although a little late! haha) on October 29th. We are celebrating his birthday but more importantly we are celebrating all the accomplishments he has made and all of the wonderful gifts that he has brought into each of our lives.
He does much better at school than he does at home. They just ordered him a new special potty chair, he really likes it. He can't quite reach the floor yet so this help him feel more stable. He has graduated out of speech class, which was pretty awesome. He really wants to talk to Jess, he still asks everyday to see his pal Jess. He also loves the picure of Sylvia Schneer. He says is that baby Sylvia? He just got a new play Lawn-mower from the Easter Bunny. That's all he wants to do is mow the lawn like daddy and his older brother. He loves to play outside, and is finally starting to run. Not a "real" full-fledged run, but he's getting close. He still loves dogs. Any kind any shape any size. Actually animals in general he loves. We're going to the zoo on sunday and he's going to the real life farm on Monday with his class.
He just got a new Parakeet about a month ago, he named him Rudy. He loves him, but we really have to watch him because he loves to put things in his cage. Last week I found a picture of his brothers on the bottom of the cage. haha We've gotten to a point with him now that every room needs to be locked. I mean before he would try a door and if he couldn't get it he would move on, but now he is like a magic man. He works it and in 5 seconds he is on the move. He goes like a streak of lighting. He's usually very good about listening but lately has just made up his mind that it's his way or no way! He very quickly says I'm sorry if he knows we are really upset with him. He wants to stay on our good side!haha
He has just started to use the computer, with us of course right with him. But he is very good at numbers and letters. He also loves music. It's so funny how when we're driving he will listen to my tapes with me (Dixie Chicks) and before the song is even over he's singing what will come on next. Same with his Elvis tapes. He loves the song Joshua fit the battle of Jehrico. I wonder why? Ha Ha
Josh has been having some episodes lately with sudden feelings of weakness and dizziness and having to lie down until it passes. We took him to see his doctor and they did blood work which was normal and then set him up with the Neurologist. She just did a 48 hour EEG to make sure that there is no seizure activity going on. We really don' think that there is, but she just wanted to be sure. We should get the results in 2 weeks. He is also going to see the Cardiologist to make sure that he doesn't have any arythmia.(or abnormal heart beats). So we go there at the end of January. Other than that he is doing remarkably well. He has us laughing all the time. He is very witty and comical. He speaks clearly, but really likes to ask question after question. We have to remind him often that not everything has to be a question, and we try to engage him in some full conversation instead. When he gets fixed on something that is all he'll talk about for weeks. He knows and loves all of the U.S. Presidents. He loves the flag and names all of them that are hanging in our Neighborhood. We have President Clinton, and the neighbors have, Pres.Truman, Pres.Nixon, Pres Kennedy, Pres. Carter, ect.... He also loves the air-sirens. (In our state they go off or are tested once a month. The first saturday of the month.) He knows exactally when that Saturday is and reminds us. We have a siren right near our home so we get in the van and drive to see it turn and hear its very LOUD siren. He names all of them as well. He also loves Truck (F150's) and trains. And he loves alarm clocks. He has three different ones. He sets them all to go off together or within a short time of eachother. So that is all we hear. BEEP,BEEP, BEEP!!!!!!!!haha
We have an Awesome Special Needs Ministry at our Church. (over 500 kids). He absolutely Loves it. I'm a volunteer in the Special Needs Ministry on Sunday mornings, what a blessing to work with the kids. Josh is madly in love with his teacher at School. It's so cute, he really has a cruch on her. She is so Awesome with him. He loves to eat and could go all day long. He can out eat his brothers by a long shot. Yet he only weighs 64lbs. So he's not a heavy weight but can hold his own. He talks about his buddy Jess alot. He still loves looking at the pictures of them from Greenfield Village. Well, sorry this is so long, but it was long over due. Thank you for lettting us share him with you. We're going to try to send a picture soon. Take Care and God Bless each of you!!!!
He recently had back surgery to correct his Scoliosis. He did great! He's such a trooper. He has always had a huge tolerance to pain. He had to be cut from the top of his back down to the bottom. If that was me, I'd still be laying in bed! ha He is very loving and kind, and does still charm all of those he meets. He loves going to Church and is such an inspiration to watch as he worships. We have an Awesome One on One Program at our Church for kids and adults with Special Needs. At present there are about 200 kids involved. He loves it. He gets to be with all of his peers. (Those with and without special needs).
He weighs 68 llbs and is 4' 11". He has grown 3 1/4 inches since his back surgery. In general Josh has been very healthy. He does have sinus issues from time to time. And allergies in the spring. But all in all he does well. He loves to go bowling and joining the Special Olympics Bowling next year. He isn't able to do it this year due to the healing time for his back. He loves to play Wii bowling. His appetite is awesome. There isn't much that he doesn't like. He can nearly out eat his older brothers. Josh's memory is still incredible. Whenever we can't remember someones name or an event that happened he is right there with the answer. He is really good at remembering numbers as well. If you tell him a zip code or phone number he will remember it forever.
He loves animals, especially dogs and cats. His strong point is reading. He received a certificate for his literacy. He was very proud as were we. He is very much into History. His older brother Jake loves that (he is going to school to be a History teacher). Josh is surrounded by so many people who love him dearly. He truly inspires us all to appreciate every day of life as it comes. He just goes with the flow and enjoys the Journey.
Sorry this was so long. It's been a while since we've updated.
He has really grown since his spinal surgery. It's hard to believe that tomorrow (9/9/09) will be one year since the surgery. He has come so far. He had a great summer, hanging out with his older brothers, going for walks with the dog and swinging. ( another thing he absolutely loves to do.) So, another school year has started. Looks like it's gonna be a good one. Thanks for letting us share him with you... Take Care!