| Jackson turns 3!Jackson turns 3 On Mother’s Day Jackson turned 3. He’s growing up so fast. I’ve been meaning to do an update on him for along time now but things just keep coming up. I never really have time and I think, oh, I’ll do it after the next testing or doctors appointment or after this happens so I that can include that in it. But then it never happens and then I wait yet again. Well, it just needs to happen now for his birthday. (this is very long, mostly so I can look back and see how far we’ve come and for those family and friends you want to know how he’s doing but we don’t have the time to keep updated.) Jackson is just an amazing little boy and every day continues to amaze me. We are so blessed to have gotten these wonderful 3 years with him and pray every day for many more to come. He continues to surprise us and leave us questioning all the time. He is growing and developing so fast. Jackson’s favorite things to play and do. He loves cars and trains. Especially Lightning Mcqueen, Thomas, The Polar Express, and fire trucks. He loves playing with his cars and trains, going to ride the train at the store, reading his favorite books in his little reading nook (which is inside his closet where we put a little blanket down for him to sit on. I often find little toys and things that he’s had during the day in the very back corner of his closet.) He loves to pretend he’s a train making all the noises, stops and whistles and moving his feet like trains. So cute! He loves playing with water. In the sink, bathtub or in his new play sink out on the porch. He’ll play in water forever, sometimes asking to take several baths a day to play in the water. He loves to pretend to cook. He has a little play kitchen. His favorite things to cook for us are hot chocolate, smoothies, pizza, and pancakes. Pretty much every day we drink a million (pretend) cups of hot chocolate. He makes it, then blows on it, then slurps it up, then wipes his mouth and says ahhhh, that’s good hot chocolate. Too funny. He loves to sing. He often asks for me to sing to him and requests certain songs over and over and over. He just gets the biggest smiles and dances along. Just recently we’ve been hearing him sing a little too. Usually when he’s by himself playing I’ll hear him sing a few notes. Also in the car he loves to listen to the soundtrack to the movie Cars and he is starting to sing along with the songs on that. Favorite songs. The ABC’s both original way and sung with a little soul to it and dancing around, (he’s just starting to sing them back and doesn’t know all the letters but can usually get through the song but a lot of the letters are run together or missed.) Mary had a little lamb, 3 little monkeys, little turtle, wiggle waggle, songs from his favorite shows, apples and bananas, the wheels on the bus. He loves to “go bye-bye.” He loves to get out of the house. Especially since I can’t drive him and we don’t go anywhere, except outside to play, until someone else can take us. He’ll request to go certain places. His favorites include stores (the grocery store, Target, Wal-mart, Costco) to feed the fish, library, park, Nana and Pepe’s house, Granny’s nursing home to throw pennies in the fountain, the mall (which he calls the city) to ride Thomas with his coins, to the preschool playground, to the farmers market. He loves to watch tv. We do limit his shows (don’t think he just sits around all day watching tv) because he so many favorites. Right now we limit to under 2 hours a day. We would like to cut that back. He used to just watch under 1 hour a day. But he’s been having a lot of health problems lately and has been very fatigued. There is only so much you can do when you have a sick kid who doesn’t feel like moving at all especially since I also have a colicky baby. So some days he does watch more tv if he’s feeling really bad. Onto his favorite shows listed in order of his favorite right now (which changes day by day since he’ll usually watch the same thing for several days in a row then switch. If he watches a movie that’s usually all he watches but if he watches a show then he’ll watch 2. Thomas, Little Einsteins, Polar Express, Cars, Signing Time, Wall-E, Rattoullie, Monsters Inc, Handy Manny, Charlie and Lola. He’s amazing at picking up things from the shows and imitating them for days. It’s crazy what he comes up with. Lately he reenacts scenes from Polar Express (drinking hot chocolate, pulling the emergency brake and falling down, Billy walking away from the train then running to get on.) He loves to eat. (Well most of the time except when he’s sick which has been a lot lately) We’ve also discovered that along with his other sensory stuff his taste is affected. He likes things that are very flavorful. He will just eat and eat things that have strong taste like spicy wings, orange chicken, steaks, and lots of other spicy things. His favorite fruit is strawberry. Vegetables are hard a thing for him since they are often very sensory overloading. Broccoli is definitely too much unless I only use the stems and it’s in something else. He likes peas but it has to be on a low sensory day. He likes soups but still has a hard time swallowing mixed texture food and often gags on soups. He loves to talk. He repeats things like crazy. Which is cute a lot the time but really isn’t a good thing to the point that he does. He picks up on words and phrases from anything and will have favorite ones that he’ll use constantly for awhile. Right now he’s saying cinders and ashes, adios, that’d be perfect, ABSOLUTELYYYYY, oh man, that’s so sweeeeeet, lots and lots everywhere, and I gonna eat/drink it all up. He loves to read. He’ll pick a favorite book and we have to read that one over and over for days in a row, then he’ll change to a new one. So it’s hard to say his favorites because he goes back and forth. But mostly he likes Goodnight Moon, his Thomas books, Moo Baa La La La, I’m a Big Brother, My Big Rescue Book, and many others. He loves being a big brother (most of the time). He is always concerned where Noah is and asking about him. When Noah is sleeping Jackson likes to wake him up to see him, which is very cute (read very frustrating). When he does wake up he gets very excited and screams “He’s awake!” Jackson loves talking to him and giving him lots of hugs and kisses. But he does get frustrated when he wants something and I’m holding Noah and will ask me to put him down so that I will hold him or play with him. Jackson is very sweet and gentle with him for the most part. He’ll sometimes try to hit him or something but I mostly think it’s to see what we’ll do. When they’re both nursing Jackson will rub Noah’s head or hold his hand. (Yes, Jackson is 3 and still nursing.) Jackson is excited about going to preschool in the fall. I’m excited that he’s excited although I know he doesn’t know what’s coming. If he did he wouldn’t be as excited. We found out on Friday that he was accepted into the special education preschool here. It’s one of the reasons why we moved to Missouri and live where we do(more expensive then surrounding cities) so that he could have chance at this really good preschool. For the past month he’s gone through several rounds of testing to see where he fell developmentally. Friday was our meeting to go over tests results and make a plan (IEP). The plan is he’ll go Monday through Thursday 3 hours a morning. He’ll be in the classroom for most of the time. The classroom is a mix of special education kids and typically developing kids. It’s good for Jackson that there will be a mix. He’ll also get 2 thirty minute sessions a week of speech, 1 thirty minute session of OT and one of PT. We’re still working on getting the goals written out for him and more will come when the school here starts. I can’t believe he’ll be going to school. We have the option of him riding the bus both ways, us driving him in the car, or a mix. For right now we’re planning on him riding with us to the school in the morning then riding the bus to go home. We’ll see how he does though. Right now Jackson gets his therapy at home and that will continue for the rest of the summer until school starts. He loves his occupational and speech therapist. His PT is ok. His OT comes every week and the PT and speech come every other week alternating weeks. He’s doing really good and continues to develop and learn new things every day. He continues to amaze me at the things he does and understands. He’s still delayed in most areas but it’s becoming less pronounced in several areas. He’s talking really good and is using 3-word sentences most of the time. His articulation is really good for having delayed speech. But most of his speech is still just imitating and repeating back to you. He’ll say longer phrases, but it’s usually a phrase he’s heard before. In OT we’re mainly working on his sensory needs. His sensory stuff is getting a lot better than before. He’s able to tolerate more food, textures, stuff on his hands, and so forth. But he still has lots of areas we’re working on. He doesn’t like to wear very many clothes. He would rather stay in footed fleece zip-up pajamas his entire life. If he does get dressed it has to be something really comfortable and loose fitting. When we went to get summer clothes we got stuff like basketball shorts and cotton shorts and a pair of board shorts. He likes them and will wear them most of the time unless it’s a sensory filled day then its only pajamas. Which is difficult because it’s getting pretty warm here now. We’re in the process of making a weighted blanket for him to sleep with that will help with his proprioceptive input and hopefully help calm him down more. In physical therapy we’re working with him on going up and down stairs without being carried or holding someone’s hands and jumping. Jumping is the hardest thing and he can’t do it at all. Most 3 year old boys love jumping around and playing and Jackson continues to try and can’t. yesterday in pt they where practicing stepping up and down on the curb and Jackson tripped pretty bad. Jackson is getting a little better with sleep. (Things got really bad after Noah was born and it was taking forever getting him to sleep and waking up at least 3 times a night.) He doesn’t ever go to bed at the same time and the time to get him down greatly varies by night by what happened that day and when he took a nap. He’ll only let me put him to bed. But we’re slowly making great improvements. Over the past couple of weeks he’s gone to sleep in his crib, with me next to him on the floor, a couple of times. Once he did it without me in the room. The past two nights he’s only woken up once during the night and after a quick rock he’s back asleep. Now onto the medical stuff. Things in this area are still constantly changing. Right now his list of diagnoses are genetic disorder with chromosome deletion, probable mitochondrial disorder or channelopathy causing hypotonia, developmental delay, multiple development regressions, sensory integration disorder, autonomic disorder, reflux, chronic GI problems, seizure disorder, apnea, hyperflexibility, metabolic acidosis. Needs daily medicines, braces, sensory diet, frequent blood work to monitor things. Diagnoses that aren’t official yet but that are being looked into right now are PDD-NOS and a blood clotting disorder. Lately our biggest concerns have been the more frequent development regressions, fatigue, and acidosis episodes. The sudden change in bowel habits. He’s always had constant diarrhea his entire life with the occasional round of constipation. Then all of sudden a few weeks ago things suddenly changed and went the other way. He went forever without going to the bathroom. The only way we keep things moving right now is to get as much fluid in him as possible, push lots of fruits, veggies and juices, Miralax, flaxseed oil, and giving him suppositories every other day. It’s been so hard having to watch him be in so much pain from the cramping and having to do suppositories on him. He just cries and cries and asks to be swaddled up and held tightly until he’s able to go. We’re not sure why the sudden change and they are still running some tests. Everyone asks now that we’ve dealt with both extremes which is worse: the constant diarrhea or the constipation. Definitely, the constipation is much worse. I would rather change 20 poopy diapers a day and have blowouts all the time over hearing and watching him cry after giving him the suppositories. So that’s our Jackson and what he’s up to right now. He’s such an amazing little boy. I love him so much. Pictures coming soon. |
