Wednesday, November 21, 2012

The kids

A house of five makes for some fun and crazy times! Oh how I love this life that God has blessed me with! Jon will be 5 tomorrow, I can't even believe it. He has come so far from when he was born even last year. He is so happy and loves his sister and little brother. He absolutely adores Leah right now. She reads to him, plays with him, tries to give him drinks from her cup, kisses him and sings and dances for him. She is very protective of him too. Always telling people to be careful with him and lets people know that it is her brother. She loves him so much! Jon tolerates James but James likes to crawl on him and Jon doesn't care for that too much. But when James is cruising around in his walker he thinks that's hilarious. Jon is doing better with trying more food of a liquid constancy. He takes spoonfuls of milk, soup, ice cream and gravy. He enjoys chocolate the best!! He is still very skinny and trying to get weight on him is a constant struggle as he can only consume so much before he vomits. He loves watching Leah eat and I think that is his motivation. He just finished another 40 dives of hbot and we seen some results of spasticity reduction but the best thing was overall health! He came down with the flu and we didn't end up in the hospital!! He went everyday in the chamber and his cough would disappear until he came out. I believe it opened his longs making him able to breathe easier. So a total of 160 dives we have done. We think we are going to try another 40 then step back and evaluate. It's out of pocket and it has reduced spasticity and has helped his speech and overall health those are all huge advantages! His developmental specialist is totally on board and she said that she now recommends hbot since she has seen before and after with Jon and that it obviously works! We still would like to do stem cell with him but are trying to find a trial so he can use either Leah or James's stem cells. I would like to do this soon as possible because the younger the better! Jon has been using his power wheelchair and has been sitting it longer. I still want him up for the fear he will one day not want to get up and try to walk. He walks in his kid walk and uses the pony more for standing than walking. We are in the process AGAIN for getting the eye gaze there was a big mishap and paperwork was lost and not completely filled out so we have to start over. He has been playing on his iPad and loves that. He is getting stronger and says ya and loves watching th three stooges. He is really com unit caring with his eyes to say where he wants to go or do. There was a day we went to therapy, hbot, and as we walked in he started to cry. I wasn't sure why but said let's go pick out a movie to which he smiled. Then we walked over to the chamber and he cried again, that's not usual. So I asked him what do you want to do he looked at the door I wasn't sure what he was trying to tell me or I was just in awe. So I laid him on grandma to go into the chamber where he really started crying so I picked him up and said what do you want and he looked at the door. I said do you want to leave and he smiled. I was a little worried but incredibly proud that he was able to communicate that to me!! Once we got home I thought about why he would have been upset and come to find out I think it was his ears. He was sick and the pressure probably was to much for his ears. We went on vacation the next day and we were gone for about 12 days so when we came back to hbot we walked in and he was his happy, smiling self! Leah just turned 3. Wow she is so awesome, sassy but awesome. She is the greatest big sister and so great with her brothers. She is definitely a little momma. Like I said she is very protective of Jon and with James she just loves to smother him With kisses. I can tell we will have problems with the sharing when he gets a little older because she takes everything away from him. Throughout the day I hear no James that's mine you can't have it! She tries to fee'd him and wants to hold him all the time. She started dance class and loves it. Her new made up song right now is shake your booty shake your booty, not really sure where she picks this stuff up. She tells us to chillax and likes to be the boss. She is very independent and usually dresses herself and picks her clothes out, I give her a choice of two outfits. She is very into fashion and loves her hair done. She is getting a longer better with her peers but the sharing is so hard for her. She loves being the leader and is always helping her teachers (Sunday school). She counts to 14. Knows her colors, working on numbers and spelling her name. She gets the L A H but forgets the e. Her vocabulary is astonishing! We get complimented all the time on how well she talks. She can hold a conversation with anyone. We often need to tell her o.k it's time to go. She is not too shy and once she is comfortable in the situation watch out she will tell you about everything. Her imagination is so fun. I love listening to her stories of castles and princesses. She sings so many songs and has an excellent memory sometimes too excellent. We hope to have her in Montessori next year. She is 37 inches and 28 lbs a petite girl but she holds her own! James is the sweetest, happiest easiest baby around! He is 8 months old now. He says momma, dada and waves bye. He crawls everywhere and it seems he is right on track. He is still nursing and eats oatmeal occasionally and some veggies here and there but 90% of his nutrion comes from nursing! I'm So proud that he is chunky(18 lbs) and its all from me!! He loves cruising in his walker and is very curious watching people and taking it all in. He is a tough cookie too. Likes to be thrown in the air and pull things apart. He sleeps well at night getting up once for a feeding but usually goes back to bed. Still no teeth so he has the cutest gummy smile. So I hope to start blogging regularly again however with 3 kids always needing momma it's hard.