Jackson's Life Journey

Hi everyone! It has been a busy few months for the Cooley Family. We have gone on three vacations, have a handful of doctor appointments, and many fun and snuggly days. In July we went to Ocean City with my parents for a fun family vacation. We have a water bug on our hands! Jackson adored the ocean, he loved playing in the water and even tried to drink it a few times. My dad and Austin took him out into the ocean and he was completely unfazed by being smacked in the face by a wave. We brought his baby pool to the beach so we could fill it up with ocean water and keep him out of the sun since he gets hot so easily. He enjoyed that and even rolled around in the sand a little bit. He ate horribly while we were there though, all hot dogs and french fries!! He only ate sand once on his daddy's watch! After we got home from Ocean City we headed for Virginia Beach for a few days. Jackson decided he really did not like sharing his daddy with any other children since Austin was playing a l...

Since my last update, Jackson has started to master crawling short distances on all fours but gets very tired when he does this. He is learning to stand and perhaps trying to walk a little. He has trouble because he has hypotonia which is low muscle tone and he tries to walk on the edges of his feet or his legs give out. His orthopedic has said that there is nothing structurally wrong with his legs or arms aside from the low tone. We have seen a neurologist on Dr. Oetgen's recommendation. She completely agreed that he is extremely hypotonic. She noted that it was more severe on the left especially when she held his right arm down and it took him at least 1 minute longer to reach to grab with the left hand and he had to be tapped on the arm with the object in order for him to respond to it. She said that his brain may have been formed differently or something similar to that and ordered blood work and and MRI. The blood work came back with a few abnormalities and we will receive the...

Hi, all since my last update a lot has changed. Over this past weekend our little family moved out of the Ranch Club and over to the beautiful community, Villas at Greenview in Great Mills. A few days in, and the whole family is loving it here. Kida is a little skittish still but she will adjust. Jackson is loving the fact that he has a nice backyard to play in, a playground a few steps from his door, a ceiling fan in his room, and he no longer is subjected to bridge traffic. Mommy is loving a spacious kitchen and 2.5 bathrooms! We have been in contact with the Infant and Toddlers program in St. Mary's County to set up his therapy, thankfully he will still be able to attend his Tummy Time Play Group in Lusby meaning his DPT (doctoral physical therapist) Tracey and his PT (physical therapist) Shelley can still keep up with his case. This has been the hardest part of moving for me; Shelley and Tracey have done amazing things with my little boy, but I have faith that St. Mary's wi...

So as most if not all of you know Jackson is in the Calvert County Infant and Toddlers Program. He has developmental delays and that isn't a dirty word or something bad to say. Its a fact and saying that we're comparing him or that everyone develops at their own rate is a disservice to him and to us as his parents. There are milestones that children are supposed to meet that are on range for their age and saying that your child doesn't meet them and getting them help is not something to be ashamed of. Jackson is developing at a rate at least two months below his age. He just had his therapy time increased from twice a month to every week. He is making strides; he tolerates tummy time now and uses his arms a little bit. He doesn't crawl, walk, sit himself up, or sit correctly most of the time. He goes into what is called extension where he locks all his limbs in place when he gets mad or doesn't want to do something. He often hits his head on things he shouldn't ...

I'm going to warn some of you now, you might not like what you have to read and you may not agree with it, but I encourage you to consider this position; especially if you care about our little boy. Jackson Cooley is on Medicaid and without the Affordable Care Act, he and I wouldn't be where we are today. When Austin got hurt in 2014 we got on Medicaid because we couldn't afford health coverage while he wasn't working... we were able to qualify due to the ACA. When we were in a better place financially we went to go off of Medicaid; however I was already pregnant with Jackson at the time. Because of my pregnancy I was kept on Medicaid which turned out to be a huge blessing. During my pregnancy with Jackson I saw 4 specialists, got over 20 ultrasounds, and lots of blood work and non-stress tests because of my bicornate uterus, Jackson's growth restrictions and his clubfeet. There would have been no way we could have paid for the extreme number of tests I had done to...