|
|
|
January 2020
Maddox was having leg pain so the doctors put her on iron. This was a very bad mistake for Maddox. She could not tolerate the iron we learned. The first time we started she passed out on the floor in our bedroom and earned an expensive ambulance ride to the hospital. We stopped giving her the iron for several weeks and then upon starting again she began vomiting and saying her lips were numb. Needless to say, we are off of this and dealing with the nighttime leg pain.
May 2019
Maddox was diagnosed with Scoliosis of her back. She is one degree from requiring a brace. We continue to monitor this.
February 2018
Maddox was diagnosed with sleep hypopnea's where she stops breathing many times a night. They have fitted her with a CPAP and she wears this nightly. She actually loves it! Won't go to bed without it. Since starting her flailing has been minimized and the best part....Her nighttime bedwetting has since completely stopped.
December 2018
Maddox was diagnosed with Platybasia which is an abnormality at the base of the skull. This means that the space where her brain meets her brainstem is very narrow. Should this space get smaller we can see neurological deficits with her body that would impact her speech and motor movements. As of 2021 this is still stable.
August 2015
Cardiology says no limitations and we get to see him yearly! Hearing test is hit or miss. She did have some wax removed from her ears and a tympanogram which showed the tubes are doing their job! Endocrinology has been cancelled for now because I was too overwhelmed to get her to Grand Rapids. Dentist appointment conflicted with a therapy session so that had to be rescheduled. I really can't say that I enjoy all these appointments and the scheduling/rescheduling that goes along with them but I can say that I am glad she continues to be healthy. In the meantime, I have teamed up with some physicians and am looking into some targeted nutritional interventions. I will keep you all posted.
March 2015
Specs4Us glasses arrived. LOVE LOVE love them! Maddox kept them on for 90 minutes tonight without a problem. I have learned to trust my gut. Maddox has work foot orthotics and even a huge plastic head shaping unit. She knows when something fits right and works for her. I just knew something was wrong with the first pair of glasses when she would only wear them for minutes. Due diligence sure pays off. On the flip side, I just took a peek at the upcoming list of appointments. Headed into cardiology and ENT season again with echocardiograms, EKS's, hearing tests, and tube checks. I always seem to panic a little about how to pull these off. That is in addition to well baby appointments, shots, and dentist appointments coming up. Where is that little grimacing emoticon when I need it! Eeeek.
February 2015
First appointment in Midland's office with a vision therapist and working on getting a second pair of glasses by Specs4Us. Her first pair does not fit on her face and this brand is made specifically for kids who have Down syndrome. The office was wonderful and are ordering two sizes for us to try. They want the fit PERFECT. Our new insurance doesn't cover vision therapy and I have a lot of work to do to convince the insurer that this is necessary.
January 2015
Went to Pediatric Opthamologist and Optometrist in Traverse City for second opinions. He tells us that Maddox's right eye problems are not muscle related but rather the brain overcompensating while trying to focus. They prescribed glasses with bifocals. I am hesitant that vision therapy wouldn't improve this a little so of course I needed another opinion. Midland here we go.
December 2014
U of M again for hearing and otolaryngology. Doctor says everything is perfect, hearing perfect and is super impressed with speech.
July 2014
Endocrinology at DeVos in Grand Rapids - Still didn't get what I wanted. Looking for an experienced doctor willing to sit down and do a literature review on each and every study ever conducted regarding growth hormones and children with Down Syndrome. I am looking for someone to work together with and problem solve our way through this. In the end, I might agree with the doctors but right now, I have not read enough proof that says I shouldn't help my child.
June 2014
Surgery and audiology appointments at U of M.
May 2014
Well baby. Completely well! Updated shots given. Still way behind but knocking them down one at a time.
March 2014
Echocardiogram and EKG, passed with flying colors. Another year will pass before seeing the cardiologist again. Small tricuspid valve leak but no activity restrictions!
December 2013
ENT says tubes are still not working. Surgery scheduled for June to take them out and put in new ones. She's missing out on hearing low quiet sounds like z and s.
September 2013
Well baby check up, passed with flying colors. Thyroid and complete blood count came back normal. Ear tubes have fallen out and are sitting in her ear canal. Appointment September 30th to have them removed while she is awake. Let's hope the doctor can get them!
**Update: He didn't get them. Appointment scheduled in three months to check the status. They are in her ears but currently not working and blocked.
August 2013
Hopefully and finally getting Maddox into the doctors for her well baby appointment in which we are months/years behind on routine shots.
June 25, 2013
Physical Medicine and Rehabilitation - Ann Arbor - Follow up on joint status. Need to get new braces for feet, going to be a fight with insurance company.
Otolaryengologst - Ann Arbor - Right ear pain, antibiotics, tubes still in place. Sllight blockage on the right. He reports that her language skills are off the charts, unheard of. Yahoo!
Pediatric Opthmalogoist - Ann Arbor - Tubes in tear ducts next time under anesthesia and vision is great.
Audiologist - Ann Arbor - Decreased hearing on the right, follow up in 6 months.
Neuropsychology- Ann Arbor - Follow up appointment in August with results!!
May 16, 2013
Pediatric Cardiologist-Alpena - No news is good news. Just a small leakage continues but no surgery needed! Treat her like any other child says the doc. Finally, someone who knows what they are talking about!!
April 16, 2013
Received new Ankle Foot Othoritcs for inverted ankles but they are too wide. Need to get them redone.
March 2013
Ear Nose and Throat in Alpena. This doctor said that Maddox's ears looked good and that we would have to repeat her audiogram and possibly fit with her hearing aids. Second opinion definitely being sought in June.
May 2012
Tubes placed in both ears and tear ducts probed. While there was no history of ear infections, Maddox failed a tympanogram and we felt that the tube placement would impact how clearly she was hearing. We noticed an instant improvement in articulation and understanding of language as early as the first night after the procedure.
February 2010
Physical Medicine and Rehabilitation in Ann Arbor- Hips are good, red reflex is present, tone is slightly reduced. Follow up in Ann Arbor in six months.
Pediatric Genetics in Ann Arbor- Maddox is able to breastfeed, her heart is working, muscle tone is good, she can see, she can hear....The doctor throws his hands in the air and says, “What more do you want?” Follow up in Traverse City in six months.
The genetic counselor stated that Maddox has Robertsonian Translocation Down Syndrome and this is is an atypical form of Down Syndrome. Translocations account for 4-5 percent of Down Syndrome whereas Trisomy 21 accounts for 95 percent of the Down Syndrome population. Two of Maddox’s 21st chromosomes fused together giving her total chromosome count 46 like you and I where Trisomy Down Syndrome consists of having an extra 21st chromosome equaling a total of 47 chromosomes. Translocations can occur because a parent is a carrier or can occur randomly, also what is referred to as a De Novo event. I have two words for you. DE NOVO!!!
Scott and I were told at this appointment that Maddox’s translocation was a De Novo event and we are in the same gene pool as everyone else as far as reoccurrence.
Cardiology in Ann Arbor- No murmur noted, good chance the holes in Maddox’s heart have closed on their own. Follow up in six months in Alpena.
April 2010
Optometrist in Alpena- Absolutely no concerns at this time!!
May 2010
Pediatrician in Ossineke- Four month well baby check up. Maddox weighs 11 pounds 3 ounces and is 225 inches long. She received one of her four month shots. Her hips and left ankle are a little hypermobile but otherwise she is in tip top shape!
Cranial Sacral Appointment- Continue to work on head shaping.
June 2010
Optometrist in Alpena - Finally we hear the magic word. Normal. Her eyes are normal!
July 2010
Cardiology in Alpena- First, Maddox was weighed. The nurses all laughed at her as she hung out on the scale swinging her legs off the end as if she had done this a million times. She probably has! Maddox had to squeal a ‘hello’ to every single staff member, the housekeeper, the nurses, the patients, the and the doctor. She is already won over the hospital, it is really cute! I couldn’t help but think about how things would be when I bring her here when she is 2 years old, 6 years old, and even 10 years old. She’ll think she owns the place!
They did the EKG and Maddox’s only job was remain quiet and still for 10 seconds. Seriously....?IMPOSSIBLE!!! Between talking, grabbing the cords, and playing on a gigantic sized piece of crinkle paper, Maddox was living it up.
After the EKG, the doctor came in and gave us an update on the three holes in her heart. The Ventral Septal Defect should be closed. The Patent Ductus Arteriosus is nothing to worry about. The only hole left in question is the Atrial Septal Defect in which we will follow up with an Echocardiogram in March. Chances are slim that the doctors will find anything alarming.
Eyes are good, heart is good....Give it to me. We are ready. What’s next?
August 2010
Pediatrician in Alpena- Everything looks really good. Dr. Conboy was able to hear the subtle murmur of the heart via Maddox’s back which means the hole is closing. A thyroid test was ordered and all of her blood work came back good. We are in the process of setting up the pediatric neurosurgeon appointments for her belly and head in addition to the physical medicine, opthamology, and otolaryngology appointment for next month.
September 7th, 10th, 16th, and 30th 2010
Physical Medicine and Rehabilitation in Ann Arbor - Scott and I woke up at 3AM, got ready, then drove 4 hours to Ann Arbor all so we didn’t have to splurge on a hotel room or travel on Labor Day weekend. It was worth it though, we got good news all around. The physical medicine doctor said Maddox is doing well but is still considered low tone. Her left ankle pops quite a bit but overall, she is in good shape. Next appointment is in March 2011!
Opthamology in Ann Arbor - The doctor did an incredibly thorough job putting various lenses and prisms over Maddox’s eyes. He checked for three things; cataracts, acuity, and cross eyedness. Check, check, and check, no concerns in any category. We don’t have to go back for 1-2 more years! Did you hear that, years, we are talking years now! What a relief!
Otolaryngology in Ann Arbor - No concerns at this time. Audiology report shows that Maddox is hearing well and no fluid build up noted. We learned that she prefers people’s voices over sounds and this shows that she is a bit delayed in the typical sound discovery that takes place around month seven. Although, we feel she is close though. There is a follow up in 6 months and we will confirm that she did obtain the sound discovery skill.
Pediatrician in Alpena - The report is that things are as good as expected to be. No immediate concerns. Thyroid testing came back good. Return in January.
Speech Therapist in Ann Arbor - I found out that I am pretty smart. Everything she suggested, I was already doing. I did have specific questions as to why Maddox chokes frequently and questions about jaw development that she was unable to answer. The ENT was not able to answer either but I will keep searching and researching until I find out!
Orthotist in Ann Arbor - We did it, we got her fitted for her plagiocephaly helmet. This was a bittersweet appointment. We were excited because we were finally getting something done about her head but we also stared at each other in disbelief. We never thought in a million years we would be sitting at an orthotics company in Ann Arbor.... A team of doctors walked in at that moment to observe the fitting. Maddox decides to greet them with biggest smile. I think this is one of the first times I was actually proud of her. I watched 10 serious physicians break into laughter, coos, and smiles. My little sunshine was responsible for that. If we changed 10 peoples day for the better in only 5 seconds, I can’t imagine what she could do with one whole day!
October 2010
Orthotist in Ann Arbor - We had the helmet fitted today and Maddox loves it. Here you go, the one and only photo I am going to post of her wearing her helmet. I can’t help but smile because she looks like she is ready to jump from a plane!
Height and Weight check - 25 inches 17 pounds.
November 2010
Orthotist in Ann Arbor - Remeasure progress on head shape.
Flu shot #2 (If mommy decides to follow through with this.....) Yes I did, but this is the last year.
December 2010
Pediatrician in Alpena - Maddox didn’t even cry for her shots this time. What a brave little girl.
Her weight and height is finally back on the growth chart in the third percentile. Outpatient therapy ordered.
Orthotist in Ann Arbor- New measurements of head taken and helmet is showing to be successful. There was a 10 millimeter discrepancy in each side of the head and we are now at a 4 millimeter discrepancy. We can decrease some of the helmet wearing time!
January 2011
Optometrist in Alpena- Maddox’s eyes are perfect and currently her vision is not following typical Down Syndrome development!!!
Scott and I took the day off January 10th and spent four hours at the hospital. We had a blood draw for CBC and thyroid as well as our PT, OT, and Speech Therapy evaluation. Maddox is going to be getting speech and PT at the hospital in addition to her home therapies and we are excited about this. The sooner we can get her moving the more she can start learning.
February 2011
Maddox continues to have speech therapy three times a week, teaching two times a week, and physical therapy four times a week. Thank God we have the most incredible babysitter in the world, who willingly hauls Maddox to all of her appointments.
March 2011
ENT in Ann Arbor - We are going to determine at a later date if tubes are warranted. There is fluid in the right ear but currently not infected. If she goes under for surgery anytime soon, then they will look into doing a CT scan, ABR hearing test, and a full inner ear evaluation. Due back again in (you guessed it) 6 months.
Audiology in Ann Arbor - Developmentally delayed in overall hearing. Didn’t respond to some low volume sounds. Fluid in right ear. Slower processing and reaction to sounds. With 0-20 being in the normal range, Maddox scored a 20 and 25, normal and just outside of normal but the audiologist thinks this will improve with age.
Orthotist in Ann Arbor - Helmet adjusted, nighttime wearings continue until helmet no longer fits. DISCHARGED!
Pediatric surgery in Ann Arbor - Surgeon says he can’t make Maddox’s belly button look any better than it does right now and opted not to do surgery.
Physical Medicine and Rehabilitation in Ann Arbor - Hips, knees, and ankles are slightly reduced in tone but no surgery or braces are needed. Don’t have to go back FOR ONE WHOLE YEAR!!
APRIL 2011
Well baby check in Alpena and more shots - Maddox checked out fairly well. She never cries for a single shot. I don’t know if I feel good or bad about this. It means she has a high pain tolerance, that’s not normal. She also has some pretty significantly enlarged lymph nodes in her right groin. The plan at this time is to monitor the size for a year and then discuss further testing.
MAY 2011
Cardiologist in Alpena - Maddox has a small amount of leakage from the right side of her heart but the cardiologist still classifies this as normal and is not concerned. The holes in the ASD, VSD, and PDA have all CLOSED! We are now on the one year follow up schedule.
This brings a sense of relief.
When Maddox was born, we had appointments with the cardiologist, speech therapist in Ann Arbor, Physical Medicine and Rehab doctor, Pediatric Opthamologist, ENT, Audiologist, Orthotist, and Pediatric Surgeon. In addition, we had a local PA, optometrist, and Pediatrician. 11 doctors. One year later, we have been cleared for some of them.
Pediatric Opthamologist: 1-2 years
Physical Medicine and Rehab: 1 year
Cardiologist: 1 year
Optometrist: 1 year
ENT: 6 months
Audiology: 6 months
Pediatrician: Well baby check ups
Orthotist: DONE
Pediatric Surgeon: DONE
Speech Therapist in Ann Arbor: DONE
Also, here is a therapy update. Each week, Maddox gets 2 home teaching visits, 2 home speech therapy visits, 2 home physical therapy visits, 1 outpatient speech visit, and 2 outpatient physical therapy visits. On average 10 hours of therapy plus what our incredible babysitter makes her do when nobody is looking! This is a ton of work for all parties but Scott and I definitely think the intensive early intervention program has been working.
AUGUST 2011
CHOP - Children's Hospital of Philadelphia Trisomy 21 clinic and visit with Sarah Rosenfeld Johnson, a nationally known Speech Therapist. Sarah's visit was priceless but we could have done without the CHOP appointment. The home team is the best team, but I had to make the trip in order to learn this.
May 2012
Tubes put in and tear ducts probed. Instant improvement with speech was noticed and eyes cleared right up. In surgery at 7:30 and on the way home by 9:30. All went great minus backing into the babysitters car at 3:50 AM.
DECEMBER 2012
Hearing test in Ann Arbor - Normal!
Swallow study in Ann Arbor - near penetration, no aspiration!
MAY 2013
Cardiologist in Alpena- Passed all tests, follow up in one year!
JUNE 2013
Pediatric Ophthalmology in Ann Arbor
Hearing test in Ann Arbor
Otolaryengology in Ann Arbor
Physical Medicine and Rehabilitation in Ann Arbor
September 2013
ENT in Alpena - Tube have fallen into ear canal.
Pediatric Otolaryngology in Ann Arbor - To follow up on tube dislocation in both ears - Result, monitor for three months and recheck. Fluid impacting hearing in right ear.
October 2013
Failed vision exam at school :( Follow up scheduled in Ann Arbor
Passed hearing exam at school :)
December 2014
Pediatric Ophthalmology in Ann Arbor- Ear tubes were plugged and partway in the canal. Decided to wait and see what the results were in three months.
March 2014
Maddox had Otolaryngology appointment in Ann Arbor and her tubes are non functional, completely blocked. Decreased hearing with low tones which means she is missing ing sounds, s sounds at the end of words, z sounds, etc... Surgery is scheduled in June. She had an eye appointment which produced mixed results so we are seeking a second opinion. We heard everything from surgery to glasses to nothing... How is a parent supposed to make a decision based on that information?! Seeking references for opthamologists!
April 2014
Echocardiogram in Alpena
Dr. Serwer, Cardiologist, from U of M comes to Alpena
June 2014
Hi Ho Hi Ho, off to Ann Arbor we go.....
Physical medicine and rehabilitation
Audiology
Otolaryngology
Surgery for ear tube replacement
Maddox was having leg pain so the doctors put her on iron. This was a very bad mistake for Maddox. She could not tolerate the iron we learned. The first time we started she passed out on the floor in our bedroom and earned an expensive ambulance ride to the hospital. We stopped giving her the iron for several weeks and then upon starting again she began vomiting and saying her lips were numb. Needless to say, we are off of this and dealing with the nighttime leg pain.
May 2019
Maddox was diagnosed with Scoliosis of her back. She is one degree from requiring a brace. We continue to monitor this.
February 2018
Maddox was diagnosed with sleep hypopnea's where she stops breathing many times a night. They have fitted her with a CPAP and she wears this nightly. She actually loves it! Won't go to bed without it. Since starting her flailing has been minimized and the best part....Her nighttime bedwetting has since completely stopped.
December 2018
Maddox was diagnosed with Platybasia which is an abnormality at the base of the skull. This means that the space where her brain meets her brainstem is very narrow. Should this space get smaller we can see neurological deficits with her body that would impact her speech and motor movements. As of 2021 this is still stable.
August 2015
Cardiology says no limitations and we get to see him yearly! Hearing test is hit or miss. She did have some wax removed from her ears and a tympanogram which showed the tubes are doing their job! Endocrinology has been cancelled for now because I was too overwhelmed to get her to Grand Rapids. Dentist appointment conflicted with a therapy session so that had to be rescheduled. I really can't say that I enjoy all these appointments and the scheduling/rescheduling that goes along with them but I can say that I am glad she continues to be healthy. In the meantime, I have teamed up with some physicians and am looking into some targeted nutritional interventions. I will keep you all posted.
March 2015
Specs4Us glasses arrived. LOVE LOVE love them! Maddox kept them on for 90 minutes tonight without a problem. I have learned to trust my gut. Maddox has work foot orthotics and even a huge plastic head shaping unit. She knows when something fits right and works for her. I just knew something was wrong with the first pair of glasses when she would only wear them for minutes. Due diligence sure pays off. On the flip side, I just took a peek at the upcoming list of appointments. Headed into cardiology and ENT season again with echocardiograms, EKS's, hearing tests, and tube checks. I always seem to panic a little about how to pull these off. That is in addition to well baby appointments, shots, and dentist appointments coming up. Where is that little grimacing emoticon when I need it! Eeeek.
February 2015
First appointment in Midland's office with a vision therapist and working on getting a second pair of glasses by Specs4Us. Her first pair does not fit on her face and this brand is made specifically for kids who have Down syndrome. The office was wonderful and are ordering two sizes for us to try. They want the fit PERFECT. Our new insurance doesn't cover vision therapy and I have a lot of work to do to convince the insurer that this is necessary.
January 2015
Went to Pediatric Opthamologist and Optometrist in Traverse City for second opinions. He tells us that Maddox's right eye problems are not muscle related but rather the brain overcompensating while trying to focus. They prescribed glasses with bifocals. I am hesitant that vision therapy wouldn't improve this a little so of course I needed another opinion. Midland here we go.
December 2014
U of M again for hearing and otolaryngology. Doctor says everything is perfect, hearing perfect and is super impressed with speech.
July 2014
Endocrinology at DeVos in Grand Rapids - Still didn't get what I wanted. Looking for an experienced doctor willing to sit down and do a literature review on each and every study ever conducted regarding growth hormones and children with Down Syndrome. I am looking for someone to work together with and problem solve our way through this. In the end, I might agree with the doctors but right now, I have not read enough proof that says I shouldn't help my child.
June 2014
Surgery and audiology appointments at U of M.
May 2014
Well baby. Completely well! Updated shots given. Still way behind but knocking them down one at a time.
March 2014
Echocardiogram and EKG, passed with flying colors. Another year will pass before seeing the cardiologist again. Small tricuspid valve leak but no activity restrictions!
December 2013
ENT says tubes are still not working. Surgery scheduled for June to take them out and put in new ones. She's missing out on hearing low quiet sounds like z and s.
September 2013
Well baby check up, passed with flying colors. Thyroid and complete blood count came back normal. Ear tubes have fallen out and are sitting in her ear canal. Appointment September 30th to have them removed while she is awake. Let's hope the doctor can get them!
**Update: He didn't get them. Appointment scheduled in three months to check the status. They are in her ears but currently not working and blocked.
August 2013
Hopefully and finally getting Maddox into the doctors for her well baby appointment in which we are months/years behind on routine shots.
June 25, 2013
Physical Medicine and Rehabilitation - Ann Arbor - Follow up on joint status. Need to get new braces for feet, going to be a fight with insurance company.
Otolaryengologst - Ann Arbor - Right ear pain, antibiotics, tubes still in place. Sllight blockage on the right. He reports that her language skills are off the charts, unheard of. Yahoo!
Pediatric Opthmalogoist - Ann Arbor - Tubes in tear ducts next time under anesthesia and vision is great.
Audiologist - Ann Arbor - Decreased hearing on the right, follow up in 6 months.
Neuropsychology- Ann Arbor - Follow up appointment in August with results!!
May 16, 2013
Pediatric Cardiologist-Alpena - No news is good news. Just a small leakage continues but no surgery needed! Treat her like any other child says the doc. Finally, someone who knows what they are talking about!!
April 16, 2013
Received new Ankle Foot Othoritcs for inverted ankles but they are too wide. Need to get them redone.
March 2013
Ear Nose and Throat in Alpena. This doctor said that Maddox's ears looked good and that we would have to repeat her audiogram and possibly fit with her hearing aids. Second opinion definitely being sought in June.
May 2012
Tubes placed in both ears and tear ducts probed. While there was no history of ear infections, Maddox failed a tympanogram and we felt that the tube placement would impact how clearly she was hearing. We noticed an instant improvement in articulation and understanding of language as early as the first night after the procedure.
February 2010
Physical Medicine and Rehabilitation in Ann Arbor- Hips are good, red reflex is present, tone is slightly reduced. Follow up in Ann Arbor in six months.
Pediatric Genetics in Ann Arbor- Maddox is able to breastfeed, her heart is working, muscle tone is good, she can see, she can hear....The doctor throws his hands in the air and says, “What more do you want?” Follow up in Traverse City in six months.
The genetic counselor stated that Maddox has Robertsonian Translocation Down Syndrome and this is is an atypical form of Down Syndrome. Translocations account for 4-5 percent of Down Syndrome whereas Trisomy 21 accounts for 95 percent of the Down Syndrome population. Two of Maddox’s 21st chromosomes fused together giving her total chromosome count 46 like you and I where Trisomy Down Syndrome consists of having an extra 21st chromosome equaling a total of 47 chromosomes. Translocations can occur because a parent is a carrier or can occur randomly, also what is referred to as a De Novo event. I have two words for you. DE NOVO!!!
Scott and I were told at this appointment that Maddox’s translocation was a De Novo event and we are in the same gene pool as everyone else as far as reoccurrence.
Cardiology in Ann Arbor- No murmur noted, good chance the holes in Maddox’s heart have closed on their own. Follow up in six months in Alpena.
April 2010
Optometrist in Alpena- Absolutely no concerns at this time!!
May 2010
Pediatrician in Ossineke- Four month well baby check up. Maddox weighs 11 pounds 3 ounces and is 225 inches long. She received one of her four month shots. Her hips and left ankle are a little hypermobile but otherwise she is in tip top shape!
Cranial Sacral Appointment- Continue to work on head shaping.
June 2010
Optometrist in Alpena - Finally we hear the magic word. Normal. Her eyes are normal!
July 2010
Cardiology in Alpena- First, Maddox was weighed. The nurses all laughed at her as she hung out on the scale swinging her legs off the end as if she had done this a million times. She probably has! Maddox had to squeal a ‘hello’ to every single staff member, the housekeeper, the nurses, the patients, the and the doctor. She is already won over the hospital, it is really cute! I couldn’t help but think about how things would be when I bring her here when she is 2 years old, 6 years old, and even 10 years old. She’ll think she owns the place!
They did the EKG and Maddox’s only job was remain quiet and still for 10 seconds. Seriously....?IMPOSSIBLE!!! Between talking, grabbing the cords, and playing on a gigantic sized piece of crinkle paper, Maddox was living it up.
After the EKG, the doctor came in and gave us an update on the three holes in her heart. The Ventral Septal Defect should be closed. The Patent Ductus Arteriosus is nothing to worry about. The only hole left in question is the Atrial Septal Defect in which we will follow up with an Echocardiogram in March. Chances are slim that the doctors will find anything alarming.
Eyes are good, heart is good....Give it to me. We are ready. What’s next?
August 2010
Pediatrician in Alpena- Everything looks really good. Dr. Conboy was able to hear the subtle murmur of the heart via Maddox’s back which means the hole is closing. A thyroid test was ordered and all of her blood work came back good. We are in the process of setting up the pediatric neurosurgeon appointments for her belly and head in addition to the physical medicine, opthamology, and otolaryngology appointment for next month.
September 7th, 10th, 16th, and 30th 2010
Physical Medicine and Rehabilitation in Ann Arbor - Scott and I woke up at 3AM, got ready, then drove 4 hours to Ann Arbor all so we didn’t have to splurge on a hotel room or travel on Labor Day weekend. It was worth it though, we got good news all around. The physical medicine doctor said Maddox is doing well but is still considered low tone. Her left ankle pops quite a bit but overall, she is in good shape. Next appointment is in March 2011!
Opthamology in Ann Arbor - The doctor did an incredibly thorough job putting various lenses and prisms over Maddox’s eyes. He checked for three things; cataracts, acuity, and cross eyedness. Check, check, and check, no concerns in any category. We don’t have to go back for 1-2 more years! Did you hear that, years, we are talking years now! What a relief!
Otolaryngology in Ann Arbor - No concerns at this time. Audiology report shows that Maddox is hearing well and no fluid build up noted. We learned that she prefers people’s voices over sounds and this shows that she is a bit delayed in the typical sound discovery that takes place around month seven. Although, we feel she is close though. There is a follow up in 6 months and we will confirm that she did obtain the sound discovery skill.
Pediatrician in Alpena - The report is that things are as good as expected to be. No immediate concerns. Thyroid testing came back good. Return in January.
Speech Therapist in Ann Arbor - I found out that I am pretty smart. Everything she suggested, I was already doing. I did have specific questions as to why Maddox chokes frequently and questions about jaw development that she was unable to answer. The ENT was not able to answer either but I will keep searching and researching until I find out!
Orthotist in Ann Arbor - We did it, we got her fitted for her plagiocephaly helmet. This was a bittersweet appointment. We were excited because we were finally getting something done about her head but we also stared at each other in disbelief. We never thought in a million years we would be sitting at an orthotics company in Ann Arbor.... A team of doctors walked in at that moment to observe the fitting. Maddox decides to greet them with biggest smile. I think this is one of the first times I was actually proud of her. I watched 10 serious physicians break into laughter, coos, and smiles. My little sunshine was responsible for that. If we changed 10 peoples day for the better in only 5 seconds, I can’t imagine what she could do with one whole day!
October 2010
Orthotist in Ann Arbor - We had the helmet fitted today and Maddox loves it. Here you go, the one and only photo I am going to post of her wearing her helmet. I can’t help but smile because she looks like she is ready to jump from a plane!
Height and Weight check - 25 inches 17 pounds.
November 2010
Orthotist in Ann Arbor - Remeasure progress on head shape.
Flu shot #2 (If mommy decides to follow through with this.....) Yes I did, but this is the last year.
December 2010
Pediatrician in Alpena - Maddox didn’t even cry for her shots this time. What a brave little girl.
Her weight and height is finally back on the growth chart in the third percentile. Outpatient therapy ordered.
Orthotist in Ann Arbor- New measurements of head taken and helmet is showing to be successful. There was a 10 millimeter discrepancy in each side of the head and we are now at a 4 millimeter discrepancy. We can decrease some of the helmet wearing time!
January 2011
Optometrist in Alpena- Maddox’s eyes are perfect and currently her vision is not following typical Down Syndrome development!!!
Scott and I took the day off January 10th and spent four hours at the hospital. We had a blood draw for CBC and thyroid as well as our PT, OT, and Speech Therapy evaluation. Maddox is going to be getting speech and PT at the hospital in addition to her home therapies and we are excited about this. The sooner we can get her moving the more she can start learning.
February 2011
Maddox continues to have speech therapy three times a week, teaching two times a week, and physical therapy four times a week. Thank God we have the most incredible babysitter in the world, who willingly hauls Maddox to all of her appointments.
March 2011
ENT in Ann Arbor - We are going to determine at a later date if tubes are warranted. There is fluid in the right ear but currently not infected. If she goes under for surgery anytime soon, then they will look into doing a CT scan, ABR hearing test, and a full inner ear evaluation. Due back again in (you guessed it) 6 months.
Audiology in Ann Arbor - Developmentally delayed in overall hearing. Didn’t respond to some low volume sounds. Fluid in right ear. Slower processing and reaction to sounds. With 0-20 being in the normal range, Maddox scored a 20 and 25, normal and just outside of normal but the audiologist thinks this will improve with age.
Orthotist in Ann Arbor - Helmet adjusted, nighttime wearings continue until helmet no longer fits. DISCHARGED!
Pediatric surgery in Ann Arbor - Surgeon says he can’t make Maddox’s belly button look any better than it does right now and opted not to do surgery.
Physical Medicine and Rehabilitation in Ann Arbor - Hips, knees, and ankles are slightly reduced in tone but no surgery or braces are needed. Don’t have to go back FOR ONE WHOLE YEAR!!
APRIL 2011
Well baby check in Alpena and more shots - Maddox checked out fairly well. She never cries for a single shot. I don’t know if I feel good or bad about this. It means she has a high pain tolerance, that’s not normal. She also has some pretty significantly enlarged lymph nodes in her right groin. The plan at this time is to monitor the size for a year and then discuss further testing.
MAY 2011
Cardiologist in Alpena - Maddox has a small amount of leakage from the right side of her heart but the cardiologist still classifies this as normal and is not concerned. The holes in the ASD, VSD, and PDA have all CLOSED! We are now on the one year follow up schedule.
This brings a sense of relief.
When Maddox was born, we had appointments with the cardiologist, speech therapist in Ann Arbor, Physical Medicine and Rehab doctor, Pediatric Opthamologist, ENT, Audiologist, Orthotist, and Pediatric Surgeon. In addition, we had a local PA, optometrist, and Pediatrician. 11 doctors. One year later, we have been cleared for some of them.
Pediatric Opthamologist: 1-2 years
Physical Medicine and Rehab: 1 year
Cardiologist: 1 year
Optometrist: 1 year
ENT: 6 months
Audiology: 6 months
Pediatrician: Well baby check ups
Orthotist: DONE
Pediatric Surgeon: DONE
Speech Therapist in Ann Arbor: DONE
Also, here is a therapy update. Each week, Maddox gets 2 home teaching visits, 2 home speech therapy visits, 2 home physical therapy visits, 1 outpatient speech visit, and 2 outpatient physical therapy visits. On average 10 hours of therapy plus what our incredible babysitter makes her do when nobody is looking! This is a ton of work for all parties but Scott and I definitely think the intensive early intervention program has been working.
AUGUST 2011
CHOP - Children's Hospital of Philadelphia Trisomy 21 clinic and visit with Sarah Rosenfeld Johnson, a nationally known Speech Therapist. Sarah's visit was priceless but we could have done without the CHOP appointment. The home team is the best team, but I had to make the trip in order to learn this.
May 2012
Tubes put in and tear ducts probed. Instant improvement with speech was noticed and eyes cleared right up. In surgery at 7:30 and on the way home by 9:30. All went great minus backing into the babysitters car at 3:50 AM.
DECEMBER 2012
Hearing test in Ann Arbor - Normal!
Swallow study in Ann Arbor - near penetration, no aspiration!
MAY 2013
Cardiologist in Alpena- Passed all tests, follow up in one year!
JUNE 2013
Pediatric Ophthalmology in Ann Arbor
Hearing test in Ann Arbor
Otolaryengology in Ann Arbor
Physical Medicine and Rehabilitation in Ann Arbor
September 2013
ENT in Alpena - Tube have fallen into ear canal.
Pediatric Otolaryngology in Ann Arbor - To follow up on tube dislocation in both ears - Result, monitor for three months and recheck. Fluid impacting hearing in right ear.
October 2013
Failed vision exam at school :( Follow up scheduled in Ann Arbor
Passed hearing exam at school :)
December 2014
Pediatric Ophthalmology in Ann Arbor- Ear tubes were plugged and partway in the canal. Decided to wait and see what the results were in three months.
March 2014
Maddox had Otolaryngology appointment in Ann Arbor and her tubes are non functional, completely blocked. Decreased hearing with low tones which means she is missing ing sounds, s sounds at the end of words, z sounds, etc... Surgery is scheduled in June. She had an eye appointment which produced mixed results so we are seeking a second opinion. We heard everything from surgery to glasses to nothing... How is a parent supposed to make a decision based on that information?! Seeking references for opthamologists!
April 2014
Echocardiogram in Alpena
Dr. Serwer, Cardiologist, from U of M comes to Alpena
June 2014
Hi Ho Hi Ho, off to Ann Arbor we go.....
Physical medicine and rehabilitation
Audiology
Otolaryngology
Surgery for ear tube replacement
