Since our January update, when she turned 6 months, a lot has happened in our lives:
Today we are overwhelmed with joy to see how far Madison has come, as she has meet most of her goals that were set regarding her weight and height. 
During her 2 weeks Wellness Check, her target weight for when she turned 1 year old was 15 Lbs… This was a challenge to maintain, especially with sick days and prolonged hospital stays that made her lose weigh on several occasions. Madison was exclusively breastfed until she turned 7 months. At this point we tried human milk fortifier for a week, but due to her Chronic Kidneys Disease, we could not use it anymore for added calories.
Madison’s Growth: We are so proud of her as she managed to reach her target weight. She went from 4Lbs 3oz at birth to 15Lbs 8oz at 1 year. At her 15 month Wellness Check as of October 20, 2016 Madison is 22 Lbs 3 oz & 29.5 inches long and her head circumference is 16 inch. In the last month she has gained 5 pounds since we changed her to “Renastart” formula feed because of her CKD.
Vaccinations: Madison has had all her vaccines during all of her wellness checks with no adverse reactions to them. This made us feel more optimistic about future vaccinations until her 12 months vaccines. During her recent 15 months wellness check & shots, she started to have an adverse reaction within 12 hours of her shots. She began having absence seizures, which she never had before, and now we have to deal with this reaction until our Neurologist can figure it out.
Milestones: Even though our Super Girl did not reach any significant milestones, we celebrate each one that she have achieved. Among those are: 1.-Reaching & Tracking 2.-Smiling 3.- Giggles & Laughs 4.-Rolling tummy to back & Back to Tummy 5.-Cries when she dislike something 6.-Blow raspberries 7.-cooing & making more sounds 8.-Great head control 9.-Rolling from Tummy to back and vise-versa 10.- Sitting unassisted 11.- Can say “Agua, Amm, Blue and Ma-ma” 12.- Can reach in a bucket of toys and take a toy out. We continue to work on Crawling and Weight Bearing on her legs.
Feeding Problems: Surgery; On September 13th 2016 Madison had her G-tube Surgery, which was successful and a life-saver. As she suffers from CKD stage 3, she often has a lack of appetite, and we use to end-up in the ER so it has save us a couple of trips already. She is 90% oral fed and 10% through the G-tube along with her medications.
Seizures: Since February were under control by 95% but recently after her 15 months wellness check and vaccine she just started having absence seizures. We have managed to get them under control, but we are very concerned about this change.
Hearing Loss: Madison’s hearing impairment has not prevented her from reaching substantial milestones, although we can tell the differences. She has partial loss on her Right Ears and good hearing o
n her Left Ears. When you talk to her at a low pitch, she tends to don’t 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 a good hearing ear to talk” So we hold on that saying with so much hope!
n her Left Ears. When you talk to her at a low pitch, she tends to don’t 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 a good hearing ear to talk” So we hold on that saying with so much hope!Vision: 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. All of this is just wait and see on it’s progression or maturation as there’s no corrective plans for now until we are referred to the Developmental Pediatrician for an evaluation. (Because this could be just a overall developmental delay).
Umbilical Hernia: Still in observation, but it has substantially reduced in size.
Upper Body Hypotonia: Great advances with Therapies but so much to continue to work in this area.
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 a year today, 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 and is being treated and her glucose levels are closely observed. As of right now her CKD is moderate… waiting for her monthly labs to see if there been any changes.
Well this is an overall update of her ongoing overall health issues and treatments.
As Madison’s Parents we have committed ourselves to give her the best treatments and well-being. We take one day at a time as we have many sunny & bright days, but we know about those dark Gray days that your whole world crumbles and 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.
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I appreciate your detailed update. You have a great deal to cope with and you are doing an amazing job. Madison is a sweet baby, especially her little turned down mouth. You mention that she has stage 3 kidney failure. Has this been stable since birth or has it changed in her first 15 months? Hopefully it won’t progress You seem to really enjoy her and dress her so beautifully. I am sorry to hear about your trips to the ER. Despite her challenges, Madison does seem to be progressing nicely. I notice she has raised her left hand to wave in the first photo. I look forward to your next post.
Beautiful Madison! Darling costume, my dear! Her growth has been fantastic. So happy for all of you. As a momma, I know “getting Elsa bigger” was a huge focal point for me, during my daughter’s first few years of life. I think you are on a great path, in that department. It so helps them weather illnesses, if/when they occur, when you can increase their size a bit! Oral feeding seems a great bright spot. That’s wonderful! Is Madison taking anything for her seizures? So glad they are mostly controlled. Thanks for the wonderful post!