Madison turned 2 years on July 19th 2017
Today we are overwhelmed with joy to see how far Madison has come. She has met or exceeded most of her goals that were set regarding her weight and height during her one year wellness check.
Madison’s Growth: We are so proud of her as she has managed to reach her targeted weight. She went from 4Lbs 3oz at birth to 15Lbs 8ozat 1 year. Now, at her 2 years wellness check, she is 31 Lbs 5oz & 34 inches long and her head circumference is 17.5 inch.
So far this year she has had 3 hospital stays; with 2 of them were for continued EEG and 1 for a seizure due to a bladder infection.
Madison has been fairly healthy other than a cold and RSV during Xmas time. She been very healthy when you compare this year to her 1st year.
Madison had G-Tube Surgery on September 13th 2016 and Tonsils and adenoids removal on April 14th 2017.
Madison has had all of her vaccines during her wellness checks with no adverse reactions to them. During her 24 months vaccines, she got her flu and pneumonia shots with no side effects. This has made us feel more optimistic about her future vaccinations.
Our Super Girl has met significant milestones in some areas; and we celebrate each one that she has achieved. Among those are: 1.-Sitting unassisted 2.-Reaching and grasping 3.– Scooting 4.-Rolling to get around 5.-Cries when she dislike something 6.-Problem solving (how to reach for a toy with assistance of another toy) 7.- Weight bearing in the standing position. (Standing against the wall.) 8.-Clapping 9.-Independent playing 10.- Rolling off the bed as well as the sofa to get on the floor and play 11.- Lost her voice along with the few words that she had learned in her 1st year due to a Gran Mal seizure 12.- Currently in the beginning phases of using her walker. 13.- Continuing to use a crawling harness to work on crawling. 13.- Potty trained at 50/50 (We say 50/50 because she uses the potty 7 out of 10 times for bowel movements and to urinate 6 out 10 times.) If we are home all day, she does well, but if we have to go out, then she does not want to go to the bathroom. She does let us know she has to go when we’re out but we have to convince her that its okay to go in her pampers. Getting her back to the routine the next day is a task as it takes a week to get her back to where she will let us know.
Madison is 90% oral fed and 10% G-tube fed. The G-tube is mainly used to administer her medicine and to supplement her feeds when she feels like having aversions towards anything going near her mouth. She still has oral aversions to solid foods, but she loves oatmeal and apple sauce. We are working closely with her Speech/Feeding Therapist to get her to overcome this aversion. While she is 90% on formula for her nutritional needs, she has no restrictions for other foods. We also give her homemade blends; especially green smoothies.
Madison had a bad case of myoclonic seizures that we have come to just accept the fact that she will always have them no matter what we do. We rejected the idea of giving her additional medication because it would have her doing nothing but sleeping most of the day while still having over 650+ jerks a day.
On May, Madison had a long status epileptic seizure which resulted in her being transported to MUSC Children’s Hospital, and then being admitted to the Epilepsy Ward. Once there, she had a 4 day EEG and was completely weaned off her previous seizure medication and prescribed a different medicine. Her new seizure medication has been a great game changer; as she has been seizure free since August and with it has come a lot of the milestones that we have previously mentioned.
Madison’s hearing impairment has not prevented her from reaching substantial milestones, although we can’t tell the differences. She has partial loss in her Right Ear and good hearing in her Left Ear.
When you talk to her at a low pitch, she tends to not have a reaction, but when you talk at a high pitch and in a surrounded environment, she can tell the difference.
This is not preventing her from learning new sounds and trying to mimic them as her Genetic Specialist keep telling us, “you only need one good hearing ear to talk…” so we hold on that saying with so much hope!
On November 2nd, she will be fitted for her hearing aid because she is getting prepared to transition to school by next year.
We been on Visual Stimulation Therapy since 3 months with lots of improvements. She has been diagnosed by her Ophthalmologist with: 1.- Poorly Developed Optic Nerve 2.-Exotropia 3.- Delayed Visual Maturation & 4.-Myopia of both eyes with astigmatism. She has prescription glasses to correct these problems.
Madison’s vision has improved so much that she no longer needs light-up toys to be able to see. She can also see an object from across the room, which for her 1st year she could only see the objects if they were presented right in front of her at and no further than 8 inches from her face. She used to have such a struggle to track and now now she is tracking objects that are both near and far away.
Still in observation, but it has substantially reduced in size. We will need to do a follow up in a year if it has not completely gone away by the time she turns 4. If it has not completely gone away, she may need surgery for it to be removed.
Upper Body Hypotonia:
Madison has made great advances thanks to her Therapies, but there is still so much to continue working on in this area to get her abdominal and hip muscles stronger.
Due to her oxygen dropping when she is in a deep sleep, she was diagnosed with a moderate case of sleep apnea. We had her tonsil and adenoids removed, which helped in clearing her airways, but it did not solve the problem fully. Since we are working hard with her oral feeding, we do breathing treatments with a CPAP machine before bed time, and it has helped a lot. Her oxygen levels are stable, and she does not need the oxygen either at bed time. She still uses her oxygen monitor every night to make sure her levels do not drop.
Congenital Cystic Kidneys Disease:
Madison was diagnosed prenatally with CCKD that we’re closely observing. At 3 months after a round of labs, we were told that our baby not only had CCKD, but that the result of the labs have shown some renal failure and she was being diagnosed with CHRONIC KIDNEYS DISEASE STAGE 3. This has been one of the most challenging diagnosis to deal with…especially when you’re told “There’s not a cure, just treatment to prolong its deterioration.” Almost two years later, I still find it hard to accept. We have so much Hope that someday there will not only be a treatment, but a cure. As a result of CKD Stage 3, Madison has high blood pressure that is being treated and her glucose levels are closely observed. As of right now, her CKD is moderate, and her labs are stable since her 9 month follow up with the Nephrologist. Ever since then, her levels have remained the same (fingers crossed that our next labs appointment in Nov 15th continues the same path)
Well this is an overall update of her ongoing overall health issues and treatments.
We take one day at a time as we have many sunny & bright days, but we know about those dark Gray days when your whole world crumbles.When it does, we turn to Jesus in prayers of Hope, Healing and Acceptance that His will be done in Madison’s Little Body.When she overcomes her crisis, we Praise His name and embrace each moment that she is still with us as we know that God only lets us borrow This Precious Angel for us to take care of.
Wow, what an amazing update!! Madison has grown so much! Thank you for sharing so much of your journey. Happy Halloween to your family!
Madison is an adorable little girl. It is obvious that you love and enjoy her very much. This update is amazing. She has made remarkable progress on all areas. You mention she has prescription glasses but she isn’t wearing them in any photo. Is it difficult to get her to wear them? I tried very hard to get Rochelle to wear glasses but she consistently pulled them off, and I eventually let her have the final say. The same thing happened with her hearing aide. Hopefully Madison will make a better adjustment to her glasses and hearing aide than Rochelle did. It is sad to read about Madison’s speech set backs after her grand mal seizure. She is young and has time to regain her words and many more. Your update is overwhelmingly positive except for her seizures and CKD. There are still good reasons to be optimistic. The right medications could keep her seizure free, and slow down progression of her kidney failure. Thank you for sharing Madison’s story with us. She is delightful. I stand with you in prayer for sweet Madison, and trust that God’s perfect will is being worked out in her life.