Figured it was about time for an update. Never thought I would be one to go months at a time without writing anything. Truth is our lives are pretty boring and nothing interesting happens to often. I'm not going to read back where I left off last so lets just talk about what has been happening lately why don't we?
Lets start with Jacob. Recently he had a new swallow study done after doing intensive speech/feeding therapy to determine if he can have "tastes" of food safely for now while we continue to work on decreasing his oral aversion. Happy to say he passed! The down side to all this is that he has has started drooling. A LOT! He has been drooling so much he chocks on his secretions. We started him back on Robinal. He took this when he used to be able to eat before, but hasn't been on it in almost 2 years, he still drool, but it helps.
We also had to switch to a new physical medicine doctor since his previous doctor is moving out of state. We are started him on a new medication called dantrolene for a few weeks to help with his tone, but it didn't do much besides put him in a sleep coma so we stopped it.. His legs are getting pretty tight again. He fights all braces we put on him to help stretch his legs. We are scheduled for a round of phenol and botox on March 11th. He has also been fitted for new hand splints, knee splits and we are going through insurance for a new stander since he is out growing his old one, and new parts for his wheel chair.
This is the best news yet...I'm not really sure what has prompted the change, but we started out patient physical therapy, occupational therapy, and the speech therapy in August. My biggest concern outside of the obvious issues of hand control, feeding, and physical control in general was his inability (or unwillingness) to stay awake and partake in any kind of activity that did not involve him sitting in front of a TV or Mickey Mouse Club House being on. Over the course of the past few months, not only has he been AWAKE during therapy, he has done so without any TV or music being on and showed some level of alertness to what is going on around him. He follows a few commands (mainly when he feels like it) and laughs and giggles. It started out with me having to have Mickey Mouse on in the van to keep him awake to get the therapy before school and then he would crash at school and sleep all day. Now he can be listening or watching anything in the van and stay awake, make it all the way through therapy, and recently the school has reported he is not taking naps at school and is showing the same level or alertness and craving attention. I am loving it, and hoping this continues to evolve into him showing higher cognitive function when it comes to prompting him to do something like switch toys, yes and no questions, etc. I truly believe he has the ability, he just has to channel it.
Now I will move on to Andrew. He also started therapy in August/September for his Sensory and Speech issues. I have not seen the improvements I have hoped for. If anything the therapy center is giving him the sensory stimulation he is craving and it is making his behaviors worse when he can't have it all the time. I notice his behavior is worse after we leave therapy. He is showing some improvement in hand strength and his ability to draw some shapes. Which brings me to my next point. As I mentioned before I know there is something going on with him and he needed help and everyone is brushing it off. We finally got the help we were looking for a B.S. diagnoses of Disruptive Behavior Disorder and just some umbrella diagnoses of Sensory Integration Disorder and Developmental Delay. I decided he needed a 2nd option (not sure it will help anything except maybe insurance claims) so I have been working on trying to get him into see a neurologist for a few months now and FINALLY got an appointment for January 9th. *update* We seen the neurologist and and she diagnosed him with PDD-NOS (Pervasive developmental disorder) This is an autism spectrum disorder. She also diagnosed his hypotonia. He has since started physcial therapy twice a week since I started this post and is waiting for a CT scan to check the white matter of his brain. The boys will be FIVE in July...that means he is suppose to start KINDERGAREN this fall. I am not sure Andrew can function in a normal classroom at this point unless some major maturing happens between now and then. I have to spoon feed this child like an infant to actually get him to eat something besides bread or pediasure.
Andrew struggles to hold a pencil/crayon in his hand correctly and make it form any sort of shape. He can not color a picture without gripping the crayon in his fist and just scribbles all over the paper. They have been working with him on cutting out shapes on paper and pointed out he does not understand the safety part of it and will continue to cut right on to his fingers where he is holding the paper (yes he has cut his fingers to the point of bleeding more than once) He randomly falls when walking due to his low tone issues, he continues to want to "W" sit no matter how many time I correct him. He even jumps on the trampoline like this with his legs bent in a W shape. I worry about his ability to keep up with the class due to these fine motor issues he has. Ava was expected not only to write in kindergarten, but form sentences. On the other hand, he probably knows more than his sister did starting school. He has mastered, his colors, and shapes by sight, he recognizes most of the letters of the alphabet, but can't sing the alphabet. He can count to 20. He also has a major tablet addiction. We bought him a Kindle Fire last Christmas and it is still his favorite thing. It does amaze me how they figure out how to navigate and play the games though without being showen or told.
I home schooled Ava from August until the 2nd week of October. At that point there were a few concerns that made me feel uncomfortable with my decision to keep her home with me. 1 was the curriculum we were using. It was 1 that was given to me by the state and she was still considered a "public school student" but the work even going into October was mostly stuff she had learned in kindergarten and was all mainly review, while some of her friends who were at the school she left were doing things far more advanced than we were. For example Ava's spelling words were cat, dog, led, met etc while the same week at the public school they were bread, spread, shed, could etc. Same thing with math just seemed like the curriculum was moving to slow, yet at the same time it was taking us FOREVER to get through the day some days because I couldn't get Ava to pay attention. She just constantly asked me if we were done barely an hour into the day. There were typically 4 subjects that were suppose to an hour each and sometime we would spend almost 2 hours on our language arts because she whined and complained about me making her read. There was lots of crying, yelling, whining, and tears shed by both of us, and it was just not a good learning environment. I cried like a baby in the guidance councilor's office and expressed my concerns for while I kept her home in the 1st place. They ended up putting her in a class with the best teacher. I absolutely love her and she really seems to like Ava. She is also in a tier 2 program where several times a day when the other kids are getting busy work when the teacher is doing small groups or 1 on 1 she goes to another area with a few other kids who are struggling and get more help. Considering She was thrown into school and they were weeks ahead of her I am very happy with how far she has come and so is the teacher. Her interim report right before Christmas showed her having 2 C, 1 A, and 3 B's if I remember correctly. 1 of the C's was a low C, but there were only 2 grades in that subject 1 was good, 1 was bad, and 1 of her B was 1 point from being a C. She had 2 weeks worth of grades following that report and nearly everything she brought home was an A or a B so I expect to see better grades if this continues on her actual report card. *update* Ava just got her 2nd 9 weeks report card in the academic areas she had C's in reading and writing and B's in everything else. I paid for the full version of spellingcity.com to help with her spelling test since she can play games on her tablet and for the past 2 weeks she has brought home 100s in both her math and spelling (also upgraded the paid version of a math game on the tablet). I have a parent/teacher conference next week to discuss how to progress the rest of the year. I have hopes that I can have her go onto 2nd grade, but worry she will continue to struggle. She is definitely behind in reading.
Hannah is a wild child. She isn't even 2 yet and has by far exceeded what I would expect from the "terrible twos". I bought a trampoline and put it in my living room in an attempt to get her to stop jumping on me all day. The plus side it also helps with Andrew's sensory issues to. No living room should every be without a trampoline! **writing 2/2 now**She will be 21 months in a few days. I was really worried about her speech, but she has finally started putting 2 words together and saying new words in general. She climbs out of her crib almost daily now. She enjoys taking all her cloths and diapers off when ever she can get away with it. She is definitely a mama's girl. She completes our family and I am enjoying being able to stay home with her.
Jack got a promotion at his job. He is a detective now. The hours in general are better for our family. He is home every night and weekend now and off holidays. I get to stay home and do all the doctor and therapy appointments on my own. To fill my time I coupon and make boutique bows for fun and sell them on the side. Life is going by crazy fast, but has settled down to a routine. We do 1 to 1 1/2 hours of therapy starting at 8am every Monday, Wednesday, and Friday for both boys. The boys and Ava are in school during the week. After therapy it is just Hannah and me for a few hours. I use this time to get my shopping and errands done. I have also started trying my hand with a friend in converting/making feeding tube backpacks (still experimenting with this) Afternoon I have the kids on my own until Jack gets home then dinner and bed time. Our weekends are usually full of whatever fun things we can afford.
Jack and I have been working on weight loss for 4-5 months now with our primary doctor with his weight loss program. We are both down about 50lbs now and have quit a bit to go. I have tried to incorporate long walks and outside fun things on the weekends and make sure I get my exercise in during the day before the children get home from school. Right now Jack and I are watching the Super Bowl and it is 1/2 time. (we recorded it so we are about an hour behind everyone else lol)
|Godzilla trying to kill Rock N Roll Mickey Mouse in her trampoline. She also fed him boogers.|
|My Jacob and Andrew (and his best friend tablet) before school last week.|
|Jack and Hannah on 1/30 we went out to lunch after dropping of the donations for Oh My Baby in Logan's honor.|
|My baby Ava. She told me that morning that even though she was a 1st grader her teacher said she is almost a 2nd grader and she wanted me to take a picture of her being almost a 2nd grader. This was also 1/30|
|1 of the bows I made.|