We are Moving Forward
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 lot with one of his little sisters who is four. We only see them a few times a year so the trip was very special. We also went to a family reunion at the beginning of August where Jackson enjoyed the waterpark even though it was freezing and the playground. He also got to meet his Aunt Christi and Uncle Scott and his cousins Karina and Katey.
Since my last update, we have received Jackson's MRI results which were completely normal which is a blessing even if it leaves us still looking for answers. We followed up with GI and she believed that Jackson does have a milk protein allergy and said we did not need to do the endoscopy. We were then referred to an allergist who did do bloodwork and we will get the full results next month. No matter what these results say; the allergist is also convinced that Jackson is allergic to milk protein so he may not have any dairy unless it is baked into something, for the next two years. We also have seen his Urologist who is still resistant to surgery to repair the adhesion he has developed on his penis; she has prescribed betamethasone cream to be applied every diaper change for the next two months. We have done this course before and it has been unsuccessful but we will try one last time. If the adhesion has not released in October then he will require surgery. We also finally saw a geneticist. She reviewed all of his symptoms, diagnoses, and his birth defects and determined that he needed a DNA bloodwork done; so basically they (a computer) will look at his DNA and be able to see alterations or if anything is missing or extra to explain all of these issues he has been having. She recommended he have his hearing tested since he failed his first newborn screening and has not a one since he passed the second test at birth; he will also see an ENT since he tends to still vomit out his nose and has a divot in his uvula that could have possibly been the start of a cleft palate that never fully formed in utero. He will be having a sleep study done since he as a tendency to twitch and snore while he sleeps. He will also be seeing an ophthalmologist to test his vision since he may be having some issues with depth perception, distance, and his eyes cross early when objects come towards him. Hopefully this band of tests will give us some answers to help our favorite little guy. We go to see Dr. Oetgen next week and this do not look promising. Jackson's left foot has been turning inwards slightly, has less dorsiflexion, resisting his boots and getting blisters. We are pretty sure he may have had a minor relapse due to lack of time in his boots. While he never missed a full night; a busy summer led to less time in his boots that he is used to, on top of a growth spurt, and a severe case of clubfoot when he was born; relapse is highly possible.
Jackson has come far in PT and OT. He is a crawling machine now and his working on putting objects into a container. He is even eating cooked carrots and peas on a somewhat regular basis, loves grapes and has mouthed a strawberry, pickle, tomato, watermelon, and cantelope which is coming a long way from where we started. He tries to feed himself off a spoon sometimes as well. Our heavy focus is OT now is decreasing his self stemming behaviors which include chewing and mouthing objects, flapping his arms and legs, and laying on his back or stomach a flailing his whole body including his head. In PT we are working on kneeling, standing, and walking. Jackson absolutely adores his therapists and claps when we say we are going to play there. That is what this therapy is... it is facilitated playing with toys and games that give him the help he needs to grow stronger and meet his milestones appropriately.
He is such a sweet boy, giving hugs and kisses and playing with his kitties and toys. We have so many words there are too many to list. Favorites include: green, blue (goo), eye, daddy, mommom, kitty, and go go. He loves his puppy toys, books, and sitting in his pack and play. He takes good naps and tolerates the car well. We love to listen to music and watch TV. We are usually watching Doc McStuffins, Elena of Avalor, or Paw Patrol. He is wearing size 2T in clothes even if they are a little big around the waste; he is really too tall for other sizes. We are rounding out the summer with some pool days and family fun before I have to go back to work when school starts. We continue to pray for answers about Jackson's medical problems. We appreciate thoughts and prayers and are happy to answer any questions you might have.
Since my last update, we have received Jackson's MRI results which were completely normal which is a blessing even if it leaves us still looking for answers. We followed up with GI and she believed that Jackson does have a milk protein allergy and said we did not need to do the endoscopy. We were then referred to an allergist who did do bloodwork and we will get the full results next month. No matter what these results say; the allergist is also convinced that Jackson is allergic to milk protein so he may not have any dairy unless it is baked into something, for the next two years. We also have seen his Urologist who is still resistant to surgery to repair the adhesion he has developed on his penis; she has prescribed betamethasone cream to be applied every diaper change for the next two months. We have done this course before and it has been unsuccessful but we will try one last time. If the adhesion has not released in October then he will require surgery. We also finally saw a geneticist. She reviewed all of his symptoms, diagnoses, and his birth defects and determined that he needed a DNA bloodwork done; so basically they (a computer) will look at his DNA and be able to see alterations or if anything is missing or extra to explain all of these issues he has been having. She recommended he have his hearing tested since he failed his first newborn screening and has not a one since he passed the second test at birth; he will also see an ENT since he tends to still vomit out his nose and has a divot in his uvula that could have possibly been the start of a cleft palate that never fully formed in utero. He will be having a sleep study done since he as a tendency to twitch and snore while he sleeps. He will also be seeing an ophthalmologist to test his vision since he may be having some issues with depth perception, distance, and his eyes cross early when objects come towards him. Hopefully this band of tests will give us some answers to help our favorite little guy. We go to see Dr. Oetgen next week and this do not look promising. Jackson's left foot has been turning inwards slightly, has less dorsiflexion, resisting his boots and getting blisters. We are pretty sure he may have had a minor relapse due to lack of time in his boots. While he never missed a full night; a busy summer led to less time in his boots that he is used to, on top of a growth spurt, and a severe case of clubfoot when he was born; relapse is highly possible.
Jackson has come far in PT and OT. He is a crawling machine now and his working on putting objects into a container. He is even eating cooked carrots and peas on a somewhat regular basis, loves grapes and has mouthed a strawberry, pickle, tomato, watermelon, and cantelope which is coming a long way from where we started. He tries to feed himself off a spoon sometimes as well. Our heavy focus is OT now is decreasing his self stemming behaviors which include chewing and mouthing objects, flapping his arms and legs, and laying on his back or stomach a flailing his whole body including his head. In PT we are working on kneeling, standing, and walking. Jackson absolutely adores his therapists and claps when we say we are going to play there. That is what this therapy is... it is facilitated playing with toys and games that give him the help he needs to grow stronger and meet his milestones appropriately.
He is such a sweet boy, giving hugs and kisses and playing with his kitties and toys. We have so many words there are too many to list. Favorites include: green, blue (goo), eye, daddy, mommom, kitty, and go go. He loves his puppy toys, books, and sitting in his pack and play. He takes good naps and tolerates the car well. We love to listen to music and watch TV. We are usually watching Doc McStuffins, Elena of Avalor, or Paw Patrol. He is wearing size 2T in clothes even if they are a little big around the waste; he is really too tall for other sizes. We are rounding out the summer with some pool days and family fun before I have to go back to work when school starts. We continue to pray for answers about Jackson's medical problems. We appreciate thoughts and prayers and are happy to answer any questions you might have.
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