This is a running list of Kaleb's specialists. I'll add to the list as we add more specialists to our lives. You can click some of the specialist titles and it will take you to their page.
Cardiologist
Cardiologist
Kaleb three congenital heart defects (CHD's). He has a PFO (hole in heart), PDA (open valve that should have closed after birth), and he is missing his right superior vena cava (a major part to everyone's heart, his has completely re-worked itself). Kaleb will more than likely need a surgery to close his open PDA valve within the next couple of months. Dr. Barlow is a great doctor who takes so much time with Kaleb to make sure he gets the best pictures and look at Kaleb's heart at our monthly visits.
GI doctor
Kaleb has been diagnosed with GERD (reflux) and a milk protein allergy. The GI doctor also suspects possible anal stenosis.
*UPDATE*
Due to sudden aspiration (formula going into Kaleb's lungs), Kaleb was put into the hospital in May 2012 and went into surgery to have a feeding tube placed along with a Nissen. This was horrible news for us and Kaleb as he has always loved his bottles and it quite attached. It has been something new to get used to and we are managing with it. He becomes hysterical when he sees a baby with a bottle but he has learned to love his feeds and we can still feed him thicker foods by mouth. The Nissen will also help his reflux by tying a part of his stomach around his esophagus to stop things from coming up which can make him aspirate as well.
*UPDATE*
Due to sudden aspiration (formula going into Kaleb's lungs), Kaleb was put into the hospital in May 2012 and went into surgery to have a feeding tube placed along with a Nissen. This was horrible news for us and Kaleb as he has always loved his bottles and it quite attached. It has been something new to get used to and we are managing with it. He becomes hysterical when he sees a baby with a bottle but he has learned to love his feeds and we can still feed him thicker foods by mouth. The Nissen will also help his reflux by tying a part of his stomach around his esophagus to stop things from coming up which can make him aspirate as well.
Geneticist
She sees Kaleb about once every 6 months and recommends any therapies or prescriptions based on her expertise in chromosome disorders and genetics.
Pulmonologist
We have concerns Kaleb has sleep apnea so we are currently working to find answers toward that. On March 25th, Kaleb had his sleep study. It was a difficult night and Kaleb screamed through most of the night. He finally went to sleep at 1 am and woke up at 4 am. I believe they were able to get enough data though for results.
*UPDATE*
Kaleb has been having breathing issues and is now considered to have Trachyomylagia, which is basically a floppy airway. We have seen another pulmonologist for a second opinion who believes that because Kaleb is hypotonic (low muscle tone) that it will become harder for him to breath as he gets bigger and his chest gets heavier. We will be scheduling for him to get a bronchoscopy to see if there are any blockages or issues with his lungs, voice box, and esophogaus.
*UPDATE*
Kaleb has been having breathing issues and is now considered to have Trachyomylagia, which is basically a floppy airway. We have seen another pulmonologist for a second opinion who believes that because Kaleb is hypotonic (low muscle tone) that it will become harder for him to breath as he gets bigger and his chest gets heavier. We will be scheduling for him to get a bronchoscopy to see if there are any blockages or issues with his lungs, voice box, and esophogaus.
Ophthamologist
At birth our geneticist thought Kaleb was missing a part of his pupil (coloboma), he's not! However he is already near sighted and we have follow up visits with the eye doctor on going. At this point we have concerns about his eye sight, the doctor found that Kaleb has all of the working parts of the eye but does not know if his brain and eyes are communicating for there to be sight.
*UPDATE*
Kaleb followed up with his eye doctor in early 2012 and his near sightedness had become a lot worse. The doctor said that surgery may also be in the near future for Kaleb's eyes. Kaleb was given glasses which he absolutely adores because he can finally see. They also add to his cuteness!
*UPDATE*
Kaleb followed up with his eye doctor in early 2012 and his near sightedness had become a lot worse. The doctor said that surgery may also be in the near future for Kaleb's eyes. Kaleb was given glasses which he absolutely adores because he can finally see. They also add to his cuteness!
Physical Therapist
Kaleb has been diagnosed with right torticollis so we attend PT once a week to work on correcting his head position. Kaleb absolutely HATES PT, with a passion.
*UPDATE*
Kaleb now has physical therapy twice a week. One of those times is in the pool, aquatic therapy. He has made amazing progress and continues to amaze me. He can now pull up to his knees and his physical therapist is adamate that he will walk, especially before he starts school. I need to believe in this! He started crawling in 2012 thanks to his physical therapist so I have hope that he will walk.
*UPDATE*
Kaleb now has physical therapy twice a week. One of those times is in the pool, aquatic therapy. He has made amazing progress and continues to amaze me. He can now pull up to his knees and his physical therapist is adamate that he will walk, especially before he starts school. I need to believe in this! He started crawling in 2012 thanks to his physical therapist so I have hope that he will walk.
Occupational Therapist
Kaleb has low muscle tone, special feet, and clenches his fists often...because of this we go to OT once a week. He actually doesn't mind his OT therapies and has been calm during them so far.
*UPDATE*
Kaleb is now going to OT twice a week. Most of the time it is for feeding therapy due to his sudden aspiration of liquids. The goal is to eventually get him to drink by mouth again, this is a tall order right now though. Since being in feeding therapy (May 2012) he has learned how to suck from a straw and has begun to feed himself with a spoon.
Speech Therapist
Due to Kaleb's recent hearing loss diagnosis he has been referred for speech therapy. He is still only babbling like you would expect from a 6 month old but he can communicate by body language. He has been working on sign language with his ST and has learned how to sign, "more", "all done", "I want", and "bubbles". It's amazing!
*UPDATE*
Kaleb is now going to OT twice a week. Most of the time it is for feeding therapy due to his sudden aspiration of liquids. The goal is to eventually get him to drink by mouth again, this is a tall order right now though. Since being in feeding therapy (May 2012) he has learned how to suck from a straw and has begun to feed himself with a spoon.
Speech Therapist
Due to Kaleb's recent hearing loss diagnosis he has been referred for speech therapy. He is still only babbling like you would expect from a 6 month old but he can communicate by body language. He has been working on sign language with his ST and has learned how to sign, "more", "all done", "I want", and "bubbles". It's amazing!
Neuro-surgeon
Kaleb has been diagnosed with plagiocephaly, big word for a flat area on his head. His is actually fairly signifant and all stems from his reflux and torticollis. Kaleb's head is flatter than 90% of children. He will most likely need a helmet, however insurance does not pay for this. :(
*UPDATE*
Kaleb did get a helmet and wore it pretty well. His head was almost round after he finished with the helmet. We were discharged from the neuro-surgeon!!!!
*UPDATE*
Kaleb did get a helmet and wore it pretty well. His head was almost round after he finished with the helmet. We were discharged from the neuro-surgeon!!!!
Orthopedic
Kaleb was born with very special feet. We really don't have a name for them because his feet condition has not been seen by most of our doctors. They are similar to clubbed feet, however clubbed feet turn inward and his feet turn outward. When he was born he was diagnosed with having "congenital vertical tallus" however since then our new ortho doctor has said he is not sure if that is correct. Kaleb also may have rocker bottom feet, if he does he will need surgery to correct this. Currently we do feet stretches to pull his feet down to normal position and he will need casting at some point. I'm attaching a video of our Ortho doctor talking about club feet and the treatment for them.
*UPDATE*
Kaleb has had multiple surgeries by his ortho on his feet and legs. His left food continues to be the most difficult one and makes him stand on the inner ankle area instead of flat on his feet. He has also been found to swing his knees back when he stands up, this may need surgical correcting in the future.
Urologist
We've recently been referred to Dr. Keating, apparently he is one of the best pediatric urologists out there. From what I've read many of his patients will drive from all over the country to come see him. We were referred to him in March after receiving spinal ultrasound results that Kaleb has dilated ureters. Ureters are the tubes that go from our kidneys to our bladder. Normally this means a blockage, and if it is signifant enough it could cause pretty severe pain. We may have just found the answer to Kaleb's pain episodes. I pray this is our answer, it's terrible that something is causing him pain but to get an answer would be wonderful. When Kaleb was born he had an enlarged kidney and his other kidney had extra parts to it. This specialist will also follow up with all of that to make sure there are no problems or treatments that Kaleb may need. We have our first appointment with this doctor on April 19th, I am so ready to get some answers!
Ear, Nose, Throat
After Kaleb's sleep study on March 25th we got a call from Dr. Weatherly, our Pulmonologist. He told us that he is diagnosing Kaleb with sleep apnea and wants us to see an ENT to see if there is any tissue obstruction in Kaleb's nose. He told us he would like for us to see Dr. Kosko, which is great because he is actually Nolan's ENT and we already adore him! Once we see him Kaleb will probably need to go on oxygen.
Neurologist
Recently during a hospitalization the doctors became concerned that his feeding issues may stem from Neuro decline. In other words, something is suddenly not going right with his brain. They gave Kaleb an MRI and we got the results that there is white matter loss and other parts of his brain are abnormal. We weren't blindsided but it's definitely not something any parent would want to hear. Kaleb will now have follow up MRI's every 6 months.
Audiologist
After Kaleb was born and was in the NICU he failed both of his newborn hearing screens. We were devastated. There were many other things we had to worry about first though. Finally he started getting regular hearing screens and it was determined he had fluid in both ears which may be causing his moderate hearing loss. We had Kaleb's ENT put in tubes to his ears to drain the fluid. We went back a few weeks later and we were excited to learn the fluid was now gone. We did a repeat hearing test to make sure that fixed his hearing problem, however it did not. We began seeing an Audiologist regularly and Kaleb again went under anesthesia for a Brain Response test to see what exactly is causing his hearing loss. It came back as conductive hearing loss, meaning the bones (which are mishapen and tiny...that happens in many Trisomy kiddos) are causing the hearing loss. Kaleb now has hearing aids, which he refuses to wear and we go monthly for follow ups with Audiology.
Pediatric Surgeon
Before I had Kaleb I didn't even really know these doctors existed and I still don't fully understand them to the fullest. They were called in to place Kaleb's feeding tube and Nissen in May 2012. They aren't the nicest group of doctors but they do what they say they will do and are very busy. We will be going back to see them again soon due to Kaleb's unbilical hernia now being able to be seen. Kaleb will possibly need to go back to the OR to fix his hernia.
Orthotist
Kaleb has now had three different pairs of AFO's (ankle foot orthotics) which help him to keep his feet and ankles straight when standing/walking. He will now also be getting an orthotic that goes up to his knee on his left leg due to his sway back knee. His right knee has almost completely corrected itself through physical therapy but not so much for the left. This will be able to bend at the knee and hopefully will not be needed to be worn all of the time.
*UPDATE*
Kaleb has had multiple surgeries by his ortho on his feet and legs. His left food continues to be the most difficult one and makes him stand on the inner ankle area instead of flat on his feet. He has also been found to swing his knees back when he stands up, this may need surgical correcting in the future.
Urologist
We've recently been referred to Dr. Keating, apparently he is one of the best pediatric urologists out there. From what I've read many of his patients will drive from all over the country to come see him. We were referred to him in March after receiving spinal ultrasound results that Kaleb has dilated ureters. Ureters are the tubes that go from our kidneys to our bladder. Normally this means a blockage, and if it is signifant enough it could cause pretty severe pain. We may have just found the answer to Kaleb's pain episodes. I pray this is our answer, it's terrible that something is causing him pain but to get an answer would be wonderful. When Kaleb was born he had an enlarged kidney and his other kidney had extra parts to it. This specialist will also follow up with all of that to make sure there are no problems or treatments that Kaleb may need. We have our first appointment with this doctor on April 19th, I am so ready to get some answers!
Ear, Nose, Throat
After Kaleb's sleep study on March 25th we got a call from Dr. Weatherly, our Pulmonologist. He told us that he is diagnosing Kaleb with sleep apnea and wants us to see an ENT to see if there is any tissue obstruction in Kaleb's nose. He told us he would like for us to see Dr. Kosko, which is great because he is actually Nolan's ENT and we already adore him! Once we see him Kaleb will probably need to go on oxygen.
Neurologist
Recently during a hospitalization the doctors became concerned that his feeding issues may stem from Neuro decline. In other words, something is suddenly not going right with his brain. They gave Kaleb an MRI and we got the results that there is white matter loss and other parts of his brain are abnormal. We weren't blindsided but it's definitely not something any parent would want to hear. Kaleb will now have follow up MRI's every 6 months.
Audiologist
After Kaleb was born and was in the NICU he failed both of his newborn hearing screens. We were devastated. There were many other things we had to worry about first though. Finally he started getting regular hearing screens and it was determined he had fluid in both ears which may be causing his moderate hearing loss. We had Kaleb's ENT put in tubes to his ears to drain the fluid. We went back a few weeks later and we were excited to learn the fluid was now gone. We did a repeat hearing test to make sure that fixed his hearing problem, however it did not. We began seeing an Audiologist regularly and Kaleb again went under anesthesia for a Brain Response test to see what exactly is causing his hearing loss. It came back as conductive hearing loss, meaning the bones (which are mishapen and tiny...that happens in many Trisomy kiddos) are causing the hearing loss. Kaleb now has hearing aids, which he refuses to wear and we go monthly for follow ups with Audiology.
Pediatric Surgeon
Before I had Kaleb I didn't even really know these doctors existed and I still don't fully understand them to the fullest. They were called in to place Kaleb's feeding tube and Nissen in May 2012. They aren't the nicest group of doctors but they do what they say they will do and are very busy. We will be going back to see them again soon due to Kaleb's unbilical hernia now being able to be seen. Kaleb will possibly need to go back to the OR to fix his hernia.
Orthotist
Kaleb has now had three different pairs of AFO's (ankle foot orthotics) which help him to keep his feet and ankles straight when standing/walking. He will now also be getting an orthotic that goes up to his knee on his left leg due to his sway back knee. His right knee has almost completely corrected itself through physical therapy but not so much for the left. This will be able to bend at the knee and hopefully will not be needed to be worn all of the time.
