Jackson's Life Journey

In the months since I have posted our family has had countless appointments, made unforgettable memories, and we have seen, worked on, and met dozens of challenges. Jackson has challenged and enriched us the same way we challenge and enrich him every day. Just a few weeks ago my little baby turned two years; a milestone that was much more difficult for his mama to get through than she thought. The days and weeks leading up to his birthday were so fun but I was sad; turning two meant that he was really no longer a baby, at this point people expect him to be a little boy. People tell me he is a big boy and that he isn't a baby, that doesn't change the fact that he will always be my baby! He is my first and thus far only child and that makes him my little baby. He had a great time at his party even if he didn't open any gifts, eat any of the food we got including cake, or play with anyone there. Jackson had his two year well visit on Monday, he is weighing in at a whopping ...

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...

As we have approached this holiday season we are full of excitement to have our wonderful, blessed life we live. Our son is our greatest joy and blessing. We have gifts wrapped and are getting the tree ready for Santa to decorate on Christmas Eve. I can't wait to see the wonder I hope will fill his eyes when he sees the lights on Christmas tree. Since my last update he has grown so much. He clocks in around 20 lbs and 30 inches; he's a lean tall boy. We are cloth diapering and he loves his pretty diapers. He's a heavy wetter so we use disposables at night but that's okay. His physical therapy is going pretty well however there are still some concerns. He was saying dada and making other intelligent sounds but he may be digressing into just squeals, yells, and grunts which could be bad. We are working on getting him to crawl but are struggling; he works hard with Ms. Shelley. He seems to prefer an extension posture which includes locking all him limbs so we need to get ...

So Jackson is now 6 months old, actually pushing 7 months now. He had his six month physical a few weeks ago and he is thriving; as if we didn't already know that. He was 17 lbs and 15 oz and 28 inches. Now he's over 18 lbs. He got a few shots and took it like a trooper, a few tears after the needles went in but nothing past that. Jackson got the flu shot as well; he goes back in a month for the second dose. Since then we have begun dealing with our first real He had his orthopedic appointment as well. Dr. Oetgen was super excited about how well Jackson's feet are doing. He gave us the go to transition into night time wear. Jackson now wears his boots from the time he falls asleep until he wakes up first thing in the morning. We go back in January for a check to make sure he isn't relapsing or anything crazy. He also had his urology appointment! Dr. Kaloo told us the hydrocenes (fluid in his testicles) resolved but she still had concerns about his hypospadia so she pr...

So excited to say that Jackson got his new shoes at the orthotist today. They are grey this time, so its a nice change. The size seems so big. It is normal to go up about two sizes when you get new shoes so that the little baby feet going in them have plenty of room to grow. He also got a new bar since his was still too small. The shoes will hopefully last us to until January and the bar should last longer than that. Jackson had his evaluation with Infant and Toddlers yesterday. He tested out at 4 month level which is more than the 25% delay that was necessary to admit him into the program. He has a lot of problems reaching for toys as well as putting pressure on his arms. He will also get some therapy to help correct what we call his froggy legs. When his shoes are off he has a hard time bringing his thighs and hips in. He also has a few social and cognitive levels to improve on including social play which involves his laugh reflex among other things. We will be hearing from them thi...

So now Jackson is 5 months old and we are entering into the next stage of his life. We love Jackson so much and he has such a big personality. He loves when you rub on his belly or tickle his feet. He plays with his ball, but loves his elephant lovey we call Ellie and the elephant crib toy Horton. We never go anywhere without them. He finally enjoys bath time though he doesn't mind not having to take one. He weighed in at a whopping 16 lbs and 1 oz at his last appointment and was 27.5 inches at his 4 month check up; that's in the 97% for his age. We are pretty sure he is going to be tall like his daddy and his uncles :). He is all legs and does he have some power behind them. He will leave you with bruises when he kicks with his bars. He has finished his casting process about four months ago.We were so glad to be done with it. I never thought I would love the sight and smell of his little feet so much. And they do stink by the way. He had his heel cord release on May 3rd and ...

Hello Everyone! I know it has been nearly six weeks since I updated my blog but life with a newborn is so hectic. Jackson is healthy and strong and weighing in at 9.18 lbs as of yesterday morning. Every week Jackson and I make the trip to a Children's Hospital location for a recasting. We have been to the Laurel clinic twice and the main hospital twice. Every week we get there and they cut his casts off with a saw which he loves the sound of. After the casts are off Jackson goes for a quick weigh in in order to get an accurate weight on in. After the weigh in his doctor comes in and moves his feet around to check their looseness and their overall progress. The casts go on next by wrapping cotton followed by wrapping the plaster. Jackson has coped well with his casts after the first few weeks. He hasn't cried the past two weeks when they pushed his feet and put on his casts. Jackson gets Tylonel if he needs but he generally doesn't. The doctor is hopeful that his casts next ...

Sorry I haven't posted in a while but there was nothing new to update. Jackson has officially arrived on scene since my last post. On Monday March 14th I was admitted to the hospital to begin the induction process at 39 weeks and 1 day into my pregnancy. On an ultrasound there were some indications that Jackson may have been slightly growth restricted so my midwife and the obs in the office decided induction was the best option. I was on pitocen by 8 am at 6 cm dilated. By 4pm I had my water broken. After that point I mostly lost track of time. While I was pushing I ended up having to give in and received an epidural. I was able to rest for a little while before finally feeling the need to push again at 1:30 am on Tuesday. Jackson made his entrance into the world at 2:08 am on Tuesday March 15, 2016. He weighed in at 6 lbs and 15 oz and was 21 inches long. Austin was so amazing through my entire labor experience, helping me to the bathroom with all my ivs on top of just being sup...

Today we went to Children's National Medical Center to meet with neonatal doctors as well as the orthopedic surgeon to discuss the plan for treatment of Jackson's club feet. It was confirmed that he does indeed have bilateral club feet; this was confirmed with a level II ultrasound that lasted around an hour to an hour and half. The orthopedic surgeon set out a treatment plan based on the Ponseti method of treatment. This method involves Children's being notified of Jackson's birth and scheduling his first appointment within the first week to two weeks after his birth. At this first appointment, he will be assessed and if everything looks good he will receive his first casts at that appointment. Depending on the overall severity of his feet he will have serial casting for 6 to 9 weeks; the casts will be changed every week during that time. Before his last casts are placed on he will have a quick procedure that involves numbing his heels and "releasing" his Ach...

So we were supposed to go to Children's National Medical Center today but that did not happen seeing as a record breaking blizzard was bearing down on our area. We have hopefully rescheduled for next week so that we can get all the information that we need to continue to support our baby boy's health as is necessary. More updates to come as we get them.

So on January 11, 2016 I had to go to an ultrasound at a prenatal specialist because my stubborn baby boy had not allowed any of the previous ultrasound techs to get good pictures of his face and of his umbilical cord insertion. While we were at the appointment they got a good look at his whole body including his face and cord. Because it was my first appointment at this office, they went ahead and check all of his limbs and parts just to be sure. While the doctor was talking to us about how wonderful our little Jackson looked, she stopped and asked the ultrasound tech to come in and take a few more pictures. The ultrasound tech stopped on one of his limbs and it was pretty clear that something was off due to the look on the faces of the tech and the doctor. It turns out that Jackson's right foot is turned inward and it is highly likely that his left foot is also turned in this way. This is known as bilateral club foot. Club foot's causes are not known; people think it could be...