Update on Blaze...

I haven't done an update on Blaze in a while. I figured New Years is a good time to do an update. Blaze is doing well! He continues to amaze us every day!  He is so silly, so smart, and always HAPPY! I can't wait to see what this child accomplishes in 2018! He is going to do great things!

2017, was a tough year for Blaze. He under went several procedures and surgeries. Honestly, I think 2017 may have been his toughest and busiest year or a very close second to his first year. He underwent GI surgery, a fundoplication,a G-tube placement, surgery on both eyes, botox injections, biopsies of his GI, EEGs, MRIs, ABR, CI testing, more allergy testing ( more food allergies), and numerous labs. The GI issues he was having are so much better now. If I knew then what I know now, I would have pushed for the surgeries before now. He is at a much better place!

Our biggest issue right now seems to be seizures. Blaze's seizures have become more frequent over the last few months.. He went about 2 years with no seizure activity at all. At the end of 2016, I took him into the neuro and she was so pleased that she decided to start weaning him down from his seizure meds. He did good, but then in the beginning of 2017 the seizures started back. We increased his meds several times and even added extra meds to get control.  He carries a rescue pen at all times. However, the new year is looking bright! He is now 2 weeks seizure free!!!!!  I think we have found the right med combination and he is doing really well!

Blaze is still in feeding therapy at the Autism Center in Atlanta. He goes there for weekly feeding and oral motor therapy. Feeding is still a big struggle. He still eats very little solid foods. He is very selective and texture picky. He has been in the intensive feeding program for almost 3 years. The doctor assured me that it is normal to take this long.  One of our goals for 2018, is for him to eat at least 2 foods from every food group and hopefully no longer require pediasure for nutrition. His doctor said to expect at least another year in the program but I pray that she is wrong because I am so over all of these trips to Atlanta. He is only able to attend school 3.5 days a week now because of therapies and appointments. Hopefully by next school year he will attend 5 days.

Blaze is doing very well in therapy. He has OT and ST in private and at school. He was in PT until last month. His PT recommended us taking a break for a while. He has been in PT with the same therapist since he was an infant. She said that he had reached an area of plateau and that is why she felt the break would be good for him. He had also got to the point to where he was just over all the therapy and not wanting to cooperate. However, he is physically doing well. He has CP and it affects the balance area of his brain so he still struggles with balance and falls from time to time but nowhere near as bad as it use to be. He will probably always be a little off balanced and as long as he slows down he does well. That's the problem. He doesn't like to slow down. He recently learned to jump on two feet and keep his balance. He was so proud of himself! That was a huge milestone for him! We are just so proud of the progress he has made and continues to make every day!

We decided to pull Blaze from the autism class that he was in. We had him moved to the mild/mod class and he is doing very well. I felt the autism class just wasn't as structured as Blaze needed/likes and he was just to distracted by the other kids. He is so much happier now and so am I! I think this class is a much better fit. 

We fought long and hard and finally got a 1:1 put in place for Blaze at school. I will say it wasn't easy but it was worth it. I was told by a few people that it wouldn't happen in this county and if it did it would require a lawyer. Well, I'm happy to say we got our 1:1 and I done it without an advocate or a lawyer present. God heard my prayers and gave me the right words to say.

My IEP advice for others is to know your rights and learn all that you can about the laws. Learn all that you can about your child's diagnosis and how it affects your child and their education. Educate everyone that works with your child. Talk to other parents with children like yours. Compare services with the services that other children (like yours) gets.  Know your options and don't settle. Don't be a bully but don't be a push over. I still worry every day when I drop Blaze off at school but nowhere near as bad as before. His 1:1 is trained in all of Blaze's needs. She knows his medical info, knows how to administer rescue meds (seizure and allergy), she follows the autism feeding program, handles his potty time (he is still in diapers), has a walkie talkie in case of emergencies, she is learning ASL along with us, and she is with him at all times. It makes it so much easier on me and the best part is that he loves her and she loves him! She is always sending me pics of the things he does at school and I sure have enjoyed that! 

Blaze and I joined a support group for parents and children with hearing loss. We go play on Saturday with our friends. We have really enjoyed that! We have learned a lot of signs and Blaze is continuing to grow his vocabulary every day! I am too!!!! We've also made some great new friends!

I really feel we are finally at a good place with Blaze over all. I'm really looking forward to 2018 and all that Blaze will do this year! He truly is amazing little boy!  

We have set a few goals for him for 2018...
1. To get potty trained. I think this is possible now that his GI is working better!
2. To learn 50 new signs.
3. To learn to spell and write his name.
4. Eat 2 foods from each food group.
5. Finish the feeding program at Marcus.
6. Attend school 5 days a week.