Julian finished Kindergarten with a bang! He did great! His DRA level is 3 (two words more and it would be a 4), which is where most the kids were heading into 1st grade. Even more good news? Julian 's Kindergarten teacher is moving up to 1st grade... and Julian gets to have her as a teacher again! Now, Ryan and I know that there are potential 'downsides' to this, but we feel for Julian (school gave us heads up and asked permission) the benefits far outweigh them. Mrs. N knows Julian, can understand his speech patterns, and knows his temperament well. We feel it would take another teacher months weeks if not months to understand him, and this would leave Julian missing out on valuable class time. We read everyday, and he's got most of the 100 sight words Mrs. N wanted him to have down by end of summer. He's known the required addition and subtraction facts 0-5 for months. He is seeing his outside speech therapist, Mrs. L, once a week (having the month of June off for summer). He has done well enough to not receive occupational therapay throughout the summer.
We have had Julian's end of year IEP meeting ... goals were changed remarkably, as he met goals set for the 2012-2014 school year within the second 9 weeks. He will be pulled out minimally for speech help, as we seek outside speech services for him as it is. He will remain in a typical classroom, as Mrs. N only had to call the in school intervention specialist twice all school year. We know this specialist, and LOVE her! We are so blessed have such a great school system.
Health stuff: Julian has been throwing up again, and having what we thought was more acid reflux type symptoms. He's on Nexuum... it took two weeks to get insurance to pay for it, so this is his first week on it. His Gastroenterologist is concerned that it might be more, so we are to call after one week for an update, then after three weeks. Currently, Julian is still coughing alot, and gagging more than we'd like.
We have a behavioral feeding team appointment coming up soon. We are hoping to expand textures that Julian will eat. He's currently fixed on fresh veggies like zucchini cucumbers, mild chedder cheese, and cheese sticks. He will eat frozen yogurt. He like crispy bacon, but only after it's room temperature. He'll eat apples, some peanut butter and Nutella Basically, that's it. He'll eat those last two on toast, sometimes. He's still on 6 boost kid essentials 1.5 a day. While his latest blood work showed within normal ranges for the first time since 18 months old (and therefore he no longer has to take that supplement) Julian is still on Zinc and a multi vitamin.
Julian has dipped just below the 5% on the growth to weight chart.... he's grown taller. The Gastroenterologist is sightly concerned with the amount of boost not increasing the weight, but please with the height increase. It's showing at least his body can grow, and at least he's not loosing weight. He's at 43 pounds, 6.5 years old, 48 inches tall.
Julians brother is being tested for CF tomorrow. We are concerned that some of Julian's absorption issues are concurrent with some of the things we've been told are symptoms, and will be contacting Julian's geneticist soon, to request the same sweat test for Julian.
I'll try to update this more frequently.
Monday, July 1, 2013
Post Kindergarten, Current Medical changes
Monday, August 20, 2012
Julian Goes to Kindergarten!
Today, after a request from us to the teacher he has been assigned since there is no set 'orientation', Julian gets to go meet his teacher and see the room!
I'm sorry, but I wasn't sending my child to a woman for forthy hours a week without knowing who I was sending him to. And without him seeing her too. Luckily, she was more than willing to see him today right after her lunch!
I will not be able to attend his KRAL test tomorrow, and maybe not even his actual first day because of clinical rotations :( So I am supper happy that I can meet her today. I'm hoping that Daddy is awake enough to get him there on time and take a picture or two for me.
Sunday, August 5, 2012
Up Next!
Julian has an appointment with his pediatrician in order to get his exemption exam/letter from vaccinations for....
Kindergarten!
I can't believe he will be in Kindergarten in just a couple of weeks! (Aug. 22) He's starting cross country for the school on Aug 13. As of right now. He might do tumbling instead. We are going to ask his pediatrician while we are there which one will be okay for him.
He hasn't lost or gained weight this summer. He has finally progressed to a high back booster seat.
He recently had an appointment with a psycharistrist because the one from the school system who was doing Julian's evaluation for readiness for Kindergarten, said that Julian had 'long term memory issues, and a low IQ'. He also suggested that he be medicated. We didn't agree, so we made the appointment with the local specialist, who happens to be nationally recognized in the field. He says that doing a 'standard IQ exam' on a child like Julian is ridiculous. He thinks he'll do awesome as an adult, as long as we keep up all we are doing now. He's learning fine, on grade point or higher on all marks, and remembers fine. As far as medication for us 'Autistic symtoms', he said that was up to us. We decided against it, as of now. If he starts to have problems in school, we will re evaluate.
Julian's speech teacher had her baby! So, she's out for three months. Julian is trying his best to adapt to the new teacher, but change is one of the thing he has trouble with. Friday, he did better with her than last week. He is still making progress in Speech though, and it's awesome to see him bloom. Occupational therapy is also moving along well. We are so proud of him!
Kindergarten?? Where did the time go?
Thursday, June 21, 2012
Potty Training!
Finally, some news.
I've written a lot about Julian's bowl issues, and how hard this has made potty training. So much so, that we were starting to feel like he had completely given up, because he had begun urinating in his pull ups as well.
So, end of last week, Julian wanted underwear out of his drawer (well, his brother's, because their waist is the same size). So we let him. He's worn them since.
He has had ZERO poop accidents, and a few urine ones. We chalk up to him being so used to being able to just play right through the need to potty.
He's getting better. His siblings are helping him along too, with their encouragement. This is really a big deal for us, because the school system was threatening not allowing him to move to kindergarten, even though he 'graduated' pre school a couple of weeks ago, with flying colors. We know legally, they could not, but this progress will help us and him to have an easier time this Fall in school.
We had pretty much given him a few months off (other than speech and occupational therapy, mentioned below) from so much testing, and appointments, but it's time to get him back in the swing of figuring out what's going on so we can better help him. He is really bright and we don't want him missing any oppourtunities that he deserves to have. A month ago we took him into our pediatrician appointment for a weight check and some blood work. Once again, his zinc was low, and his iron was back to the 'too low' side of things. So he's back on those extra supplements. Weight wise, he's slowing growing taller, but his weight is unchanged. He's 36/37 pounds at 5.5 years of age. We've made his follow up Neurologist appointment at Akron Children's Hospital for this coming month, along with his Gastroenterologist appointment at Cleveland Clinic.
Right before his preschool graduation, we had his IEP meeting. This was a disaster in most ways. As soon as I get a chance, I'll write that stuff out. I want to give parents of special needs/learning issues children a heads up on how those things really work and what our experiences have been.
From that appointment, we have decided, with the opinion of his pediatrician, to get our own Psychiarist opinion. He has an appointment this fall with a doctor that we as his parents, and the community, highly recommend.
Tuesday, January 3, 2012
Boost Kid Essentials 1.5 Cal
Julian is no longer getting his boost the way that we've been getting it for the last four years. Now, his other insurance is giving us a really hard time getting it. I'm in a slight panic, because we are down to less than one case, about 20 boxes. That's 4-5 days stretching it out. We started the process or obtaining a prior authorization (needed to fill the script for the formula) two months before we knew we would need it. It's now been 4 full months, and it still hasn't gone through.
We've gone by the pharmacy at least once a week that whole time. The insurance company is now telling the pharmacy that they need a CRN form filled out by the physician. Mind you, this is after a script for the same thing from both his pediatrician and gastroenterologist, as well as letters of necessity from both of them. There's nothing left the pharmacy can do, and I undertand that, but I'm upset because my child NEEDS this. Ryan called the insurance company today, and we are waiting for a call back.
Before this formula, Julian was on a premie formula (he wouldn't latch as an infant, then had massive acid reflux), then a soy formula. As soon as he was 1 year old, he was put on pediasure. He didn't gain weight on it, and it was like he could never get enough. He was put on Boost Kid Essentials 1.5 cal after that, and little by little... he began to gain weight! Not much, but he stopped loosing weight. He finally, at 2, got above 20lbs. He still wasn't on the wight 'growth chart' until he was almost four. For the last year he has made it to 3-5% (hoovers around there) on the chart for weight.
At one point, for a procedure, he had to go without his boost for 1 day. He literally lost 1 full pound in that 24 hour period. Mind you, he wasn't even 20lbs at this point. It took three months to gain that weight back. So, you can see why I'm scared that he might be going without it for ANY period of time while we figure out how on earth to pay for this stuff. Each case is $127 at the pharmacy for 27 juice type boxes. I've been looking on Ebay, and I can get a case for about $40, plus around $20 for shipping. Still a lot of money on a full-time student and mom's budget. Especially considering that he goes through at least 4 cases a month.
Wednesday, December 21, 2011
Thursday, October 13, 2011
Julian is 5 Years Old Today!
