New Home and an Update
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 will continue that care. Jackson had just been evaluated by an occupational therapist for feeding issues and some sensory triggers and we are hoping that St. Mary's will incorporate OT into his PT care just as Calvert had been planning.
After months of debate, Austin and I decided that it was time to leave our pediatrician's practice and seek out care that would yield results for Jackson's recurring problems. His old pediatrician saw him at least twice a month for a year for ear checks, lung checks due to a constant cough, wheeziness, and albuterol/hydroxizine medication cycles. His pediatrician saw no concerns in these chronic issues or his ever growing list of quirks and developmental delays. His response was always his brain is thinking about his feet or he's sick, or his reflux is acting up. We found a home with Children's Pediatricians and Associates; Dr. Brubaker saw Jackson one time and ordered specialist referrals, and agreed that things just didn't seem right given his age, and lack of official diagnoses. She said that he should not be vomiting several times a week while on 2 extremely effective acid reflux medications; we see a GI specialists at Children's on Friday. She said he either has irritated airway syndrome, which means that whenever he is sick he presents with asthma symptoms or he may have asthma; the diagnosis depends on how his symptoms progress over the spring and summer. Both of these she assured us have treatment to prevent/help him deal with these issues. She agreed that he seemed to have a lot of issues going on and that he needed to be genetically tested to see if there was an overarching problem or condition that can help with treatment and understanding why he is the way he is. For those who are not aware, Jackson has at least a 2 month developmental delay, along with his hypospadia and bilateral clubfeet. He also has severe GERD (acid reflux) and seems to have severe issues when it comes to food textures and anything placing pressure on the palms of his hands or an enclosed grip with his hands. He has started crawling but only uses his arms and right leg, his left leg drags and is weak when standing. He still refuses to use his arms for some functional tasks including sitting up. He has also taken to smacking is left hand raising questions about a greater something going on with his left side. Of course I am not saying anything IS wrong or that something IS going on, what I'm saying is we are aware of his differences and we are seeking out opinions to gauge what we can do and what we need to do in order to help him succeed in his life.
He has a follow-up from his hypospadia surgery which we thought went well but we were informed that some of the skin from the shaft of his penis has stuck back to the head. This has forced up to pull the skin apart every time we change his diaper, making an already difficult task with a somewhat mobile toddler even more difficult. If this treatment was not successful in addressing the issue he will be forced to have another surgery to remove the scar tissue from around the head of his penis; something I think will need to happen and I am not looking forward to having to subject him to again.
Jackson is such as happy child, he never lets anything stop him. He laughs constantly, loves being tickled, and always wakes up in time to say goodbye to his daddy before he leaves for work. He says "daddy", "Done", "down" and maybe "dog". He also loves to demand his "baba" when he is ready to go to bed. He has a full set of teeth and enjoys his solid food. He sleeps very well in is big boy bed and is thriving in PT. Its hard for me sometimes that he doesn't say mama but I know he knows who his mama is. His new favorite toy is his HotchPotch from Joe and Olivia so it goes everywhere. His favorite blankets are cut up jersey pillow cases. He has decided he doesn't need a morning nap no matter how grumpy he gets without it! His smile can melt and any heart and his loud mouth is something that will never be stopped. I will update again soon; I promise.
After months of debate, Austin and I decided that it was time to leave our pediatrician's practice and seek out care that would yield results for Jackson's recurring problems. His old pediatrician saw him at least twice a month for a year for ear checks, lung checks due to a constant cough, wheeziness, and albuterol/hydroxizine medication cycles. His pediatrician saw no concerns in these chronic issues or his ever growing list of quirks and developmental delays. His response was always his brain is thinking about his feet or he's sick, or his reflux is acting up. We found a home with Children's Pediatricians and Associates; Dr. Brubaker saw Jackson one time and ordered specialist referrals, and agreed that things just didn't seem right given his age, and lack of official diagnoses. She said that he should not be vomiting several times a week while on 2 extremely effective acid reflux medications; we see a GI specialists at Children's on Friday. She said he either has irritated airway syndrome, which means that whenever he is sick he presents with asthma symptoms or he may have asthma; the diagnosis depends on how his symptoms progress over the spring and summer. Both of these she assured us have treatment to prevent/help him deal with these issues. She agreed that he seemed to have a lot of issues going on and that he needed to be genetically tested to see if there was an overarching problem or condition that can help with treatment and understanding why he is the way he is. For those who are not aware, Jackson has at least a 2 month developmental delay, along with his hypospadia and bilateral clubfeet. He also has severe GERD (acid reflux) and seems to have severe issues when it comes to food textures and anything placing pressure on the palms of his hands or an enclosed grip with his hands. He has started crawling but only uses his arms and right leg, his left leg drags and is weak when standing. He still refuses to use his arms for some functional tasks including sitting up. He has also taken to smacking is left hand raising questions about a greater something going on with his left side. Of course I am not saying anything IS wrong or that something IS going on, what I'm saying is we are aware of his differences and we are seeking out opinions to gauge what we can do and what we need to do in order to help him succeed in his life.
He has a follow-up from his hypospadia surgery which we thought went well but we were informed that some of the skin from the shaft of his penis has stuck back to the head. This has forced up to pull the skin apart every time we change his diaper, making an already difficult task with a somewhat mobile toddler even more difficult. If this treatment was not successful in addressing the issue he will be forced to have another surgery to remove the scar tissue from around the head of his penis; something I think will need to happen and I am not looking forward to having to subject him to again.
Jackson is such as happy child, he never lets anything stop him. He laughs constantly, loves being tickled, and always wakes up in time to say goodbye to his daddy before he leaves for work. He says "daddy", "Done", "down" and maybe "dog". He also loves to demand his "baba" when he is ready to go to bed. He has a full set of teeth and enjoys his solid food. He sleeps very well in is big boy bed and is thriving in PT. Its hard for me sometimes that he doesn't say mama but I know he knows who his mama is. His new favorite toy is his HotchPotch from Joe and Olivia so it goes everywhere. His favorite blankets are cut up jersey pillow cases. He has decided he doesn't need a morning nap no matter how grumpy he gets without it! His smile can melt and any heart and his loud mouth is something that will never be stopped. I will update again soon; I promise.
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