I'm Blogging This!

Guess who's back to wearing glasses after a nice loooong break?? Jack Riley, of course. We had an eye exam this afternoon and that left eye is giving us grief again, even after surgery last year. We are to patch two hours a day and wear his glasses all day. When I told Jack he would have to wear his glasses again he smiled and reached for mine. I told him when we got home he could wear his because mommy needs hers to drive! There is a chance he could need another eye muscle surgery in the future. I have given myself permission NOT to think about that for two months until our follow up appointment.

Jack is doing well since his stay in the hospital. He hasn't had any signs of illness what so ever. We have a follow up tomorrow morning with his new ped. He should get the okay to return to school tomorrow! YAY!

Our hospital stay was uneventful. The worst part was the blood draws and the IV sticks. Other than that he had a pretty easy stay. He was put on a three day drip of Gentamicin which has some very serious side effects thankfully none of which occurred! The doctor explained how Jack has a nasty bacteria in his system and luckily we caught it early. The Pseudomonas is resistant to a lot of antibiotics and we were stuck between a rock and a hard place when it came to choosing meds to treat it. He is now on oral Bactrim for 7 days and most likely will stay on it if the Pseudomonas is found in his culture next week. The staff was wonderful -- we moved rooms several times the first day, and even had a roommate at one point...which wasn't pleasant. Thankfully Jason got us moved again to a single room and although we were told we'd have to move if someone else needed it, but we stayed there until discharge! Next week he has the renal ultrasound and the dye/bladder test as well as another culture. I will keep you posted on those results.

I wanted to share some milestone moments too! We've been working for over two years in outpatient speech therapy to get Jack to blow. Bubbles, horns, straws, anything and everything with no success. We've been using the talktools horn hierarchy. Along with a special program administered by the SLP. Well, like I said for two long years we've worked and nothing...he just could not get the oral motor planning to do it. He would become frustrated and wouldn't even let us put the horn to his lips. So we're on a break from all outpatient therapy until Spring (he still gets school therapy 4 times a week) and I've been working with him on all of his therapies at home. Well, guess who finally can blow through anything now!!!!!!!!!! JACK RILEY!!!!! I know some people can't get how important this is -- it seems so small, but it's really, really HUGE I promise!! He is so very proud of himself too.

Jack also said his first 3 word sentence today at the eye doctor. Yesterday while Pa Pa and Grammie Tina were visiting we were telling our dog Bridget to "GO LAY DOWN" because she was all over everyone and so excited to have company. A few times Jack said "LAY DOWN" and we all giggled. Well today we were waiting for the doctor and Jack looked right at me and said "GO LAY DOWN" LOL!!!! Had there been a comfy area I would have. Sometimes his speech is clear and sometimes it's hard to know what he's saying. He tries so hard. "GO LAY DOWN" sounded a little mushed sort of like "GO YAY YOWN" but it still made my day!!! Lately nurses and doctors have been able to understand him too...which is another little boost for us. He's coming up with new words every day -- I've honestly lost count (around 200 now?). So I realize he's still extremely delayed but he's actually verbal now and it's exciting! I still wouldn't call it to the conversational level, but the action, labeling, requesting, sometimes demanding words are there and growing daily.

I am a little nervous because tomorrow is our IEP meeting. I think most of Jack's goals will remain the same with a little tweaking on frequency or length. For example one goal may be to walk 15 feet with his walker, which he's passed so we would increase it to 25 or 50 feet. I don't believe too many new goals need to be written. I am going to ask whether they feel it's necessary for us to bring Jack's wheelchair too and from school. He uses a variety of equipment at the school and if it's all the same to them he can use their stuff at school and our stuff at home. I've mentioned it before -- but I am thrilled with all of the items they have available and how many different positions they get the totally immobile children to use during the day! Jack is mobile by knee walking and using his walker, so anything else they want to add is cool with me. I guess the things that have me fretting is learning the dreaded numbers. They always give an age level and it's upsetting to learn how wide the gap is getting. I know they are JUST numbers :) I tell my peers this stuff all of the time! lol...I will update when I get home.

Gosh, I've written a ramble today! I wanted to mention so much and I've tried to make that great mental note of "I'm Blogging This!" too many times to count this week! The bad thing is if one doesn't blog it right away it can get lost!