Andrew and Nathaniel Update

It has been awhile since updating you all on how the boys are doing…

They are doing so well since we moved up to Pine (north of Payson, AZ) from Phoenix. They are enjoying life now that we are living in a place where the temperatures are much cooler (about 20 degrees cooler than Phoenix).

Andrew has been able to go outside daily, which is helping build his strength and endurance. We are still in the process of dealing with his “episodes” that continue to baffle his doctors. However, we are learning how to better handle them and, fortunately, they are less frequent and shorter in duration.

Also, we have found an excellent therapist for both boys. This has been very helpful dealing with ongoing difficult issues.

Nathaniel still relies on his feeding tube to maintain his weight. We are slowly making progress though.

I am thrilled with both of the boys’ progress this year as we continue to homeschool both of them…

Andrew is testing at 5th to 6th grade levels for most subjects (technically he is in 3rd grade). He was tested by a neuro psychologist which helped to us to adjust to his learning style.

Nathaniel is making great progress with all subjects, especially in his writing skills. He is finishing up 7th grade strong. He definitely has the mind of an engineer! His creations amaze me. I feel so blessed to be able to stay home and be apart of their schooling.

Paul and I are feeling much more at peace with the ongoing medical issues which has been a great blessing. Our move to the mountains has truly been the best thing for our family. We thank God for his guidance and direction always.

Love,
Jessica and Paul

Andrew Fishing

Nathaniel and Andrew - Musical Instrument Museum

Nathaniel and Andrew Science

Nathaniel - Niagara Falls and Seattle Space Needle

Andrew - Big Ben and the Bald Eagle

Nathaniel Fishing

Nathaniel Update (Andrew’s brother)

Nathaniel Update – Thankfully Nathaniel’s prescription was approved the first time! Praise God! He will start using it today and hopefully get back to living a somewhat normal life. We are very thankful for having insurance…looks like the retail price would be about $1200!

A number of people have been asking questions about narcolepsy. Not too many are familiar with it…myself included. I’ve always thought is just meant someone sleeps a lot but didn’t know much more than that. It seems that Nathaniel has a pretty severe form of narcolepsy. Here is a link to an excellent summary about childhood narcolepsy for those that are interested in learning more.

http://www.chop.edu/service/sleep-center/about-sleep-disorders/narcolepsy.html

In Nathaniel’s situation, he has been experiencing very deep sleeps (and quickly) which makes it very difficult to wake him up. He seems to get into the REM sleep cycle within 8-10 minutes and does not come out of it easily. In most people it takes you 60-90 minutes to get into the REM cycle and you go in/out of it throughout the night. Nathaniel stays in the REM cycle the entire time he is sleeping. He has intense dreams during his sleep, but can’t remember anything about them afterwards. As you can imagine this has been very scary for him, since when he wakes up he ends up very confused and disoriented. Many times he will wake up and feel paralyzed where he can’t talk or move until someone either touches him or it eventually goes away after a little bit. This is called sleep paralysis.

He has moments where he gets overly excited and somewhat collapses. He usually has enough time to catch himself, but it is similar to the feeling you have when your legs are tired and they just can’t hold you up any longer. This is called Cataplexy or a sudden loss of muscle movement/control.

He has also been doing weird things like getting up to go to the bathroom but not remembering it. Sitting up and talking then going right back to sleep and not remembering anything about it. We have all done similar things like this on occasion, but his are tied to narcolepsy. This is called “Automatic Behavior” or performing a task without having conscious control over what you are doing. Sort of like when you drive to work and don’t remember how you got there. The problem for Nathaniel is that he can easily go through daily activities, but due to his narcolepsy won’t be “present” in the moment (so to speak). Hopefully his medication and adjustments to his sleep cycle will help fix this issue.

There isn’t a cure for narcolepsy, but thankfully it is possible to control most of the symptoms with medication and lifestyle adjustments. It’s going to be a lifetime adjustment for him and our family. I don’t want to get into the details of what that means right now, but we trust God that he will pull us all through this next adventure.

Thank you for your continued prayers and support. We are very fortunate to have you in our lives.

Love,
The Madonias

I wish is were just a bad dream…

I really don’t know how to put this into words, so please forgive me in advance for being so open. We are at such a loss right now…I wish that everything that has been happening recently were just a dream. It seems so unreal and I wish it was just a bad dream. Unfortunately, it seems that it is our reality. I know that so many others are struggling with their own issues and feel bad for even bringing up what we are struggling with right now. We created Andrew’s website for many reasons, including helping others that are faced with similar struggles and an outlet to help us communicate our honest feelings, thoughts, etc. Today we need to use the outlet as we are close to the breaking point. Please don’t feel obligated to read any further…we just have to release this pressure somewhere. I may end up deleting this post later…who knows.

We are so thankful that Andrew has been fairly stable recently. The extra medical bills were beginning to slow down and it really seemed like the bleeding was beginning to stop. Jessica and I decided that our family needs to downsize so we can try to begin living a normal life and pay off all this accumulated debt. About a month ago, we started looking into various options to reduce our monthly expenses. We investigated moving out of state and things seemed to make sense to get Andrew out of the heat in Arizona since it makes it really difficult for him over the summer. Unfortunately, that option quickly fell apart and we felt it wasn’t what God wanted us to do at this time. Next, we looked into other options here in Arizona and were running into many dead ends since the cost of living is so high. It was getting very frustrating, because we just couldn’t seem to find a way to ease our situation. Thankfully, Steve and Jill had offered for us to stay with them for a few months while we try to get back on our feet and figure things out. That seemed to be a great plan but then we stumbled across an amazing deal on an apartment closer to my work. It worked out to be a great savings and lined up perfectly with when we need to move out of the house that we are renting. We felt (and still feel) that it was a God send…so we jumped at the opportunity. Everything seemed to be falling into place, so we started working on downsizing, selling lots of things on craigslist, garage sale, etc.

The day before we left for our summer vacation we learned that my vehicle needed the timing belt and a number of other items replaced. When we got back from vacation we decided to get it fixed and sold all of our stock to pay for the repairs. We had purchased the stock and always kept it in case of an emergency, so it seemed like everything was still on track…just another bump in the road. :-)

Then shortly after you probably learned about Nathaniel’s baffling medical issues. He continues to sleep 16 hours a day and we are still trying to figure out the exact cause. It seems that we are possibly on the right path, but the timing couldn’t be worse than right now. However, we can’t ignore something serious like that so we continue to push on for his sake.

It just seems so unreal and honestly feels very unfair. I am trying not to have pity party or give up, but honestly it’s hard not to feel that way. I think the thing that was the feather that broke the camels back was yesterday when I didn’t get a very large sale that I’ve been expecting for 2 weeks. It was going to give us the shot in the arm that we needed. Instead of getting a break, now we are in a situation where we will owe my company. Thankfully, they will work out a repayment plan from my future commission checks, but like I said it just seems to unreal.

I so wish that I was making this stuff up or that I am going to wake up and realize it was just a dream. I don’t know how much more we can handle…we both broke down yesterday. Thankfully, Justin and Kara took the boys so we could decompress a little and get back up to face today. We aren’t looking for sympathy or attention or money or anything like that…just needed to vent this morning. We would appreciate your continued prayers, though, knowing that somehow God will change things for us. We know he has a plan but right now we are struggling to understand it. Thank you for letting me share our frustrations…it helps to be able to vent from time to time. We are very fortunate to be surrounded by so many caring people.

Love,
The Madonia’s

Andrew Update

We apologize for not updating you for so long.

Andrew has been doing so well!!! It’s been a tremendous blessing! He is making great progress and we couldn’t be happier. He is only doing IVIG every other week now compared to weekly. His amount of daily medications has been cut in half! His energy levels have been pretty good ever since we made radical changes in our diet. We have eliminated all processed foods and are following The Daniel Plan. Homeschooling has proved to be very helpful for Andrew and is helping him to catch up with where he should be academically. He is still a little behind in a few subjects, but should be on pace with students his age after next year. He hasn’t been hospitalized for a long time now. It’s been such a miracle and blessing to see him doing so well. We can’t thank you enough for all of your prayers and support over the past 5 years. Many of you have followed Andrew’s journey and know that we all faced some very scary times with Andrew and his health. At this point, we are not sure if he truly has Mitochondrial disease. We honestly don’t know the cause of all his health issues has been and we may never know. However, at this point are very thankful that he is doing so well regardless if we ever find out what the cause has been. Don’t get me wrong, he still has significant health issues, but they have been manageable and he has remained stable for some time now.

Thank you so much for all of your prayers, encouragement and financial support over the years. I don’t think we could have made it to this point with out you.

Love,
The Madonia’s

Paying it Forward

You may recall us posting a few weeks ago about being featured by mommy blogger Rachelle Sparks…Jessica and I have decided to pay the meals forward to a family we recently met. We have been greatly blessed over the years as we faced difficult times with Andrew’s condition and would like the donations received to go towards the Leyva family.

Would you consider donating to help this well deserving family get meals and to take one last worry off their plate (pun intended)?:-)

Thank you so much for all that you have done for us.

Love, The Madonia’s

PS – Below is the link to the site to donate.
Check it out (and help spread the word!) http://www.youcaring.com/other/mission-food-for-families-the-madonia-family-/126463

Rachelle Sparks features Madonia Family on her Mommy Blog for a Fundraiser

From Rachelle Sparks (mommy blogger):
I (virtually) met the Madonia family through an old high school friend, who posted on my FB page that Andrew Madonia and his family were on a cruise to the Bahamas for his Make-A-Wish trip – and from the looks of the website Andrew’s parents, Paul and Jessica, keep for him (http://prayingforandrew.org/), it was the trip of a lifetime.

As Paul writes, “Andrew has perked up and really been doing so much better since the Disney Cruise. He really seems to have a lot more drive to keep pushing on and in some instances kind of seems to be getting better.”

Andrew Madonia suffers from Mitochondrial Disease (aka “Mito”). While there are too many symptoms to list, here are a few: weakened immune system, muscle weakness, asthma, feeding tube, GERD/acid reflux, leg misalignment, facial paralysis , petit mal seizures, delays in fine and gross motor skills, sensory issues , lack of physiological development, and migraines.

From birth, Andrew showed signs that things weren’t quite right, and while doctors told Paul and Jessica he would most likely “grow out of it,” their guts told them otherwise. After two years of trying to figure out what was going on with their son, doctors finally gave them the diagnosis.

As Paul writes on his blog, “Many of us have been knocked down, broken, and felt our world crumbling to pieces when faced with difficult times. Andrew experiences these things everyday but does not give up…he’s a true fighter.”

This is one of the reasons I wanted to feature the Madonias as the first recipient of Mission: Food for Families. They face fear and uncertainty with courage, strength, and faith, and Andrew faces it all with smiles. Even during the most painful procedures, Paul says Andrew has a smile on his face and thanks doctors and nurses when they’re done poking and prodding.

With a life so consumed by hospital visits and doctor appointments, with your help, we can raise money to provide fully-prepared meals for this family – one less thing for them to worry about – through homebistro.dinewise.com (http://homebistro.dinewise.com). Let’s help take one thing off the Madonias’ plate – cooking dinners – so they can, instead, do what they enjoy most: spending time with one another.

While Andrew’s activities are often limited by his disease, he continues to do the things he has always loved doing – playing with his service dog, Quade, playing soccer, Legos, dress up, watching movies, and playing Mario Kart on the Wii.

This is a wonderful family who has gone through a lot, and wants to share the lessons they have taken away from it all. After starting a Prayer Warriors page on their website (http://prayingforandrew.org/?page_id=608) and seeing the support they received, Paul and Jessica realized the impact they could have on their readers.

Paul said their website has been a way for them to “keep Andrew’s story out there for others struggling with similar issues. We have been deeply humbled and blessed throughout the whole experience. We have learned to be thankful for what we have.”

Sincerely,
Rachelle Sparks, Author of “Once Upon A Wish: True Inspirational Stories of Make-A-Wish Children” www.onceuponawishbook.com
– See more at: http://www.youcaring.com/other/mission-food-for-families-the-madonia-family-/126463#sthash.M4rD4e00.dpuf