Ep. 70 - Hudson's Hope; They're Not Always Right.

October 15, 2019

Ep. 70 - Hudson's Hope; They're Not Always Right.


Welcome to episode #70 of the Mount Motherhood Podcast.

In today’s episode, we chat with Melissa about her five-year-old warrior, Hudson. Hudson has been diagnosed with: Hydrocephalus, Cerebral Palsy, Anopthalmia and Growth Hormone Deficiency. Despite what the doctors have advised, Melissa has continued to fight for and challenge Hudson. Today, he is enjoying life as a kindergartener among his "typical" peers!

Since recording this episode he has also learned that the team at Campaign One At A Time has secured funding for a three day trip to Lego Land selling "Smile Like Hudson" bracelets!

Learn how Melissa has advocated for Hudson and how they have both overcome challenges to ultimately help Hudson lead age-appropriate independence.

Resources Mentioned/Recommend in this episode:

Children's Hospital Los Angeles

Campaign One At A Time

Glendora Music and Art's School

TASK

Mama Tip:

I was a preschool teacher before having Hudson, so I believe music is important especially while the brain is developing. I recommend (to parents often) repetitive music in the first few years of life. Like preschool songs. I played the same cd for about a year to the point where Hudson knew the words. I believe that by doing so, it improved his language skills and memory. Here are my favorites that I play for Hudson: Raffi | Charlotte Diamond | Greg & Steve


You can find a full transcript below.

You can follow this family's journey on Instagram HERE

Be sure to subscribe and leave a review on Apple Podcasts or Spotify

TRANSCRIPT:

Host - Ivan[00:00:08]Welcome to the Mount motherhood podcast. Thanks for tuning into another show. And just a reminder to take a moment leave a review and subscribe so we can reach more listeners around the world.

Guest - Melissa[00:00:20]Welcome to the podcast. Melissa thanks so much for taking the time. Can you start off by introducing you and your family?

Guest - Melissa[00:00:28]Hi I'm Melissa lovely and my husband is David lovely and we have three boys. Jason Jeremy and Hudson.

Host - Ivan[00:00:40]To backtrack a bit. Can you walk us through the day or even the months leading up to the birth of Hudson and where he's at now? I know it's a lot to pack in on the first answer but if you can do your best.

Guest - Melissa[00:00:55]Well on Valentine's Day morning I had an ultrasound done and I thought it was just a routine because I had been having many. And so I just thought it was a regular ultrasound and they saw that Hudson's brain was filled with fluid.

Guest - Melissa[00:01:19]I had never heard of hydrocephalus and they offered abortion. Which obviously we denied. But I was eight months pregnant and also in shock and from that point on is when. A roller coaster of appointments started. Cardiologist to neurosurgeons to a variety of hospitals because they weren't sure where he should be born.

Guest - Melissa[00:01:57]But he ended up being born at a local hospital which was scary was the fact that he needed to be in the NICU and have brain surgery right away. So that added to the appointments. We lived in Wrightwood which is at the time which was in the mountains not really close to any hospitals that had A special NICU for him. So. Yeah, it was. It was just one scare after another and then it was. Well if he survives birth.

Guest - Melissa[00:02:34]Then we will place a shunt in his brain and a shunt is a mechanical device that drains the fluid. The cerebral so I can't say. So. CSF from his brain down to his avid abdomen.

Guest - Melissa[00:02:54]So Hudson survived birth and at one day old he had the shunt placement and did pretty well. He needed to learn how to eat on his own and breathe on his own before they could release him from the NICU.

Guest - Melissa[00:03:16]He was released at two weeks old. Which is pretty good. And just everything looked well and so. But we had one appointment in the NICU and they showed us brain pictures of, C.T. scans of his brain and they said there were some parts missing and they said this would be long term care like for the rest of his life. And we don't know if he'll be able to eat, breathe, walk, talk on his own, ever. So, you know of course, that was heartbreaking. But. I also believe... I believe that God's ultimate position.

Guest - Melissa[00:04:07]And I just. Something has always told me that no matter what the specialists have been telling us he's going to be fine. And I've done I... As soon as I found out about him having hydrocephalus I researched and if there was one positive story about children with hydrocephalus then that would be...That was the only story I held on to and because some of them do struggle and some of them do have brain damage.

Guest - Melissa[00:04:43]Hudson does. As well. Yeah, he spent two weeks in the NICU.

Host - Ivan[00:04:53]During those two weeks, I know Hudson is now five years old, but during those two weeks the NICU what do you remember being the most helpful to you as a resource. Or you know someone or something to lean on assuming that maybe you weren't as active on on social media as you are now.

Guest - Melissa[00:05:10]I think it would be like the nurses. There was one time where I. I mean it was this. I had to have a c-section and so I couldn't see him in the first couple of days. Down in the NICU. Which was. So hard.

Guest - Melissa[00:05:29]And I demanded for him to... For them to let me go see him. I just said specifically because he had damage to his eye and it's something that we didn't know about. And I was just so heartbroken. But I remember sitting in my room crying and one nurse coming up to me.

Guest - Melissa[00:05:56]Or found me crying and she just. You know explained to me that... "How I should not be as heartbroken and I should fight for him and how he's going to need me..." She just was loving and told me that I couldn't be fearful my whole life for him because it could really eat me alive.

Guest - Melissa[00:06:27]And just be strong and talk about it. But I literally was sitting in the dark in my hospital room when she caught me crying. I wish I could visit her or find her name. And thank her again.

Guest - Melissa[00:06:44]Mm-hmm. Thanks for thanks for sharing. And obviously it takes an incredible person like Hudson is to overcome so many obstacles um through these five years. Do you know, I'm sure you have plenty but are there memories that stand out from his first couple of years where you could really see his personality and just kind of a glimpse of how determined he is and he was even in those first couple of years.

Guest - Melissa[00:07:17]To me with Hudson. I mean it's been at his own pace and the speed of it of him progressing and hitting milestones has not been a typical speed it's actually been a lot slower.

Guest - Melissa[00:07:34]So there's been so many tiny moments but what made me believe in him, even more, was the way he looked at things and looked at the world.

Guest - Melissa[00:07:47]And like his kindergarten teacher just told me, "is he telling you..." He just asked me, "Is he telling you or asking you about certain stories I read or what he's learning, because he seems to be very keen when I have circle time."

Guest - Melissa[00:08:08]And that's something that like Hudson has always been like he...you can just see that his brain is working. And even when he couldn't talk I taught him sign language and obviously he talks now but he picked that up right away. His fine motor has always been a majority of the time right where it should be.

Guest - Melissa[00:08:38]And his pediatrician said if his fine motor is well then the brain is well. And as long as you see that... and it's always been I would catch him picking up the tiniest objects. So little moments like that... has inspired me to keep fighting for him and not that I wouldn't but it just gave me hope. He gave me hope he always was the one to give me hope when I felt discouraged.

Host - Ivan[00:09:10]I know Hudson has a special meaning behind the words, "Good morning." Do you want to mention that?

Guest - Melissa[00:09:28]Especially when he was younger he would say good morning during the afternoon. He would say good morning in the evening and we really thought wow he's...He's confused. And so we would try to correct them and say no it's afternoon right now. No, it's evening right now. And then we finally realize that good morning to him meant he was happy because every time he said good morning it was some we were doing something fun and he was happy but he would say good morning. So I guess.

Guest - Melissa[00:10:11]He's a morning person and so he's happy in the morning and so he figures. I think he gets. Good morning and happy confused. But. We don't correct him anymore. In fact, he said, "good morning" today because he was happy about his dad, was going to play roadblocks with him. But and so he doesn't do it as often but he still does it once in a while and we just think it's so cute.

Host - Ivan[00:10:44]That is very cute and how...Can you talk a little bit about the IEP process for your family? What...what information or resources did you find help uh through his uh IEP the Individualized Education Program.

Guest - Melissa[00:11:01]I felt and this is what I advise parents is to talk to...find an advocate out there.

Guest - Melissa[00:11:10]And I've always worked with, over the phone, an advocate from TASK and they're out of Orange County. I believe Anaheim. But this advocate was out of somewhere in L.A. County and she helped me tremendously. Through TASK they're free advocates and they can help you over the phone. Sometimes they meet with you. And she, it's almost like these advocates are like lawyers and really, really opened my eyes to the fact that just because Hudson can't walk does not mean he cannot be in a regular classroom because Hudson has always tested cognitively fine in the normal range.

Guest - Melissa[00:12:08]But the dilemma has been...is that he cannot walk. But I really felt because he's always moved forward with his gross motor, his walking. I knew one day he would walk and why put him in a lower academic class when he's going to walk one day.

Guest - Melissa[00:12:34]And I also believe that it starts now... Like teaching him now to be in our world because if we don't teach him now as young as kindergarten as young as preschool. It's going to be difficult later on in life. Teenage years and adulthood. So. Yeah. So as far as the IEP process it has not been easy and there have been a few times where we did not agree and we just didn't sign the IEP.

Guest - Melissa[00:13:17]And at one point we were gonna start a due process but I ended up in the hospital for eight days and I really felt like that answered my question like I cannot beat the district.

Guest - Melissa[00:13:37]He just does not need to be in pre-school. So I homeschooled him for preschool years and obviously, if he's testing cognitively fine without any schooling I must be doing something right because I really believe in constantly exposing my boys to education out there whether it's the zoo or the museum. I really believe in hands-on learning...experiences like that.

Host - Ivan[00:14:13]Well, it's obvious you're doing a great job in and in going back and bringing him to the full day of school what uh what did you do to try to build up or prepare him my guess for the new routine of doing a full school day.

Guest - Melissa[00:14:30]Well, we tried TK a few months ago and he was in TK about a month and a half.

Guest - Melissa[00:14:41]And each week we increased the hours but then he had summer break. So I also signed them up two weeks before school started. I signed him up to a program, like a camp for children with disabilities at a hospital where he has his therapy.

Guest - Melissa[00:15:08]And at this camp. Therapists worked along with him and helped him get used to a routine and get used to playing with others and having snack and playing outside.

Guest - Melissa[00:15:24]But for the most part. Yeah. Kindergarten is a drastic change for him. It's a long day but it's from 8 to 130 and it's been an adjustment and a struggle and he's been tired and but his endurance so far in the past couple of weeks has increased thankfully and we're starting to see it in his therapies after school.

Guest - Melissa[00:15:51]He still struggles in his therapies but he's not as tired and speaking with his teacher, their five and a lot of them are tired and he told me a lot of them are asking for naps so I don't feel as concern. But at the same time, I worry because Hudson's little body works harder than a typical 5-year-old because he has the CP and he has his struggles on walking and he has the walker.

Guest - Melissa[00:16:26]But I believe he can do it. He has no choice, it's time. But he also...he also has an aide in the classroom not a one-on-one aide but an aide that was hired to help him.

Guest - Melissa[00:16:40]But at a distance, because we all want him to be completely independent one day and having a one-on-one aide would not be the least restrictive environment for him.

Guest - Melissa[00:16:56]So she's out a distance and she's amazing. But at the same time helps the other kids.

Guest - Melissa[00:17:04]Obviously self-care is very important for parents even if it's you know 5,10,15 minutes. How do you um. What do you like to do to kind of recharge I guess if you have those...those uh small moments when they pop up.

Guest - Melissa[00:17:23]Well I try really hard to read my devotions on I have a Bible app and some of them are just five-minute devotions and light candles. Take hot baths, kind of make spa=like experiences at home because someone like me cannot get to the spa ever and that and sometimes I like to watch my damn reality Housewife shows that really takes my mind away from everything because it's just crazy stuff.

Guest - Melissa[00:18:11]It's good to recharge and I know on your Instagram channel there's a link to the campaign. Did you want to mention what association that's integrated or part of? And how or what the goal is I guess behind that campaign.

Guest - Melissa[00:18:27]Well, campaign OAT is a campaign a foundation that's been following Hudson to appointments. The founder Brody has met us at Children's L.A. and his therapy's at our home and what they do is they help one child at a time in the campaign which is Hudson's campaign right now is has been going on for one week. But it goes on for three weeks and they asked if Hudson had some sort of wish and Hudson's one of Hudson's wishes to not just go to Lego land but to stay at the Lego Land Hotel.

Guest - Melissa[00:19:13]And truthfully I just found out that the goal that they're trying to raise...trying to hit. Weil let Hudson stay at Legoland hotel for three nights or three days. So.

Guest - Melissa[00:19:34]He would love it. In fact, he was asking about Lego Land yesterday. Now. My teens. Would not.

Guest - Melissa[00:19:44]They're not too excited about it. And. So it's just literally something. Strictly for him. Because he's five, so we're hoping to meet the goal and campaign OAT is selling SMILE LIKE HUDSON bracelets.

Guest - Melissa[00:20:05]That is in at Hudson's Hope...our bio and hopefully we reach his goal.

Guest - Melissa[00:20:28] Actually I forgot to mention this part. They follow children and help children with life-threatening medical conditions and I didn't realize it was... I thought it was only children with cancer and they're probably one of the only ones that don't only do children with cancer.

Guest - Melissa[00:20:53]It's I realize that it's for all children with life-threatening medical conditions and Hudson, the hydrocephalus... Having a shunt that can malfunction, any day, and also that keeps him alive. Having a device that keeps him alive is life threatening and chronic for the rest of his life.

Host - Ivan[00:21:21]You know just looking at some of the other...some of the other images on your Instagram page. I know there are different therapies that Hudson is involved with and I know he also goes to Glendora music and art school I believe.

Guest - Melissa[00:21:36]Did you want to touch on any of the places that have helped him along the way and give kind of a shout out to stuff that's that's worked.

Guest - Melissa[00:21:46]Well, we tried the piano this summer to give him something to do. Now that school started we've had to stop that because I cannot fit it in his schedule yet.

Host - Ivan[00:21:58]Sure.

Guest - Melissa[00:21:59]School...the schooling has taken a big chunk out of his schedule and...yeah I don't know how to fit it in yet.

Host - Ivan[00:22:10]Sure sure.

Guest - Melissa[00:22:12]Even therapies and Children's LA appointments. Yeah, he has some appointments coming up and it's, he's just going to have to miss school. Which is all new to me because I've never had a child that has had to miss so much school. Because of one appointment but these one appointments are at the hospital and it's not a quick appointment and definitely not a quick drive because it seems like the traffic has increased over the past couple of years and what used to take me an hour and 15 minutes now takes close to two hours just to get to Children's L.A from where we live.

Guest - Melissa[00:23:04]And without traffic, it's 45 minutes.

Host - Ivan[00:23:09]I know on the um jumping around here with the questions but I know on the on before we got on the air you mentioned one of your favorite quotes is from Mr. Rogers and it's um "my mom used to tell me to look for the helpers." Are there any certain words of encouragement that resonate with Hudson during his tough... Toughest moments. What do you like to tell him to kind of keep him...keep him going?

Guest - Melissa[00:23:37]To keep Hudson going?

Host - Ivan[00:23:38]Yeah.

Guest - Melissa[00:23:42]Lately, we've been telling him. Don't say I can't do it. Roar like a lion. Keep fighting like a lion and he thinks it's so so cute. Especially because the movie Lion King was out this summer and seems to be popular and just right now it's roaring like a lion.

Guest - Melissa[00:24:07]We'll be strong, like a lion.

Host - Ivan[00:24:11]Well, that's a great way to close out. Is there anything else you'd want to mention about Hudson or about an organization you're affiliated with or even just you know words of encouragement for other parents out there that are listening.

Guest - Melissa[00:24:25]Yeah of course.

Guest - Melissa[00:24:26]I mean the whole reason why I started Instagram was there was an incident last summer that made me reshare like the past few years and everything that I've gone through with Hudson.

Guest - Melissa[00:24:42]The roller coaster and I realized this stuff is hard and I remembered how many times I felt alone. And this is why I started Hudson's Instagram because I know there's moms out there that are getting diagnosis after diagnosis. From specialists and they're fearful and they're heartbroken and they're leaving those appointments and tears. They're not sleeping at night. But I. My advice is to all of them. Is that those specialists are not always right. And do not lose faith. Do not lose hope and never give up. Keep advocating and keep researching. But they're not always right.

Guest - Melissa[00:25:34]And get rid of those specialists which I've had to do because yeah I've had some that said you know, "Well Hudson may never walk, so why would you want him to be larger." Because he does have growth hormone issues. So at one point I obviously had to have his growth hormones tested but I was straight out told that.

Guest - Melissa[00:26:06]Basically the specialist advised me to keep him small because he was never going to walk.

Host - Ivan[00:26:13]Mm-hmm.

Host - Ivan[00:26:16]Well he's proven them wrong time and time again and I know he'll continue to prove him wrong. But we really appreciate you taking the time Melissa. And I know you said it. You guys are headed out to the pool today. So enjoy that. And we can't wait to follow his journey and our listeners I'm sure excited too to hear this and cheer him on as well. But. Thanks again. And I can't wait to connect soon.

Guest - Melissa[00:26:39]Thank you so much. I so appreciate you listening to Hudson's story.