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Christian's Journey

One day at a time…

Warning: Ramblings of an emotional momma….

These past two years I have learned so much, I have grown so much, I’m SO thankful and blessed for EVERYDAY spent with my sweet boy. Christian has brought so much joy and love to our lives. He touches people’s lives daily with his immeasurable strength. His sweet smile can brighten a dark day in a instant, he just radiates love.
Although we have had many amazing happy days… we have had some pretty dark days.  And today, unfortunately, is kicking my butt. It’s literally a battle with myself. My strong kick ass momma mentality vs. the weak, sad, grieving momma mentality…. Sometimes I just can’t climb out of the darkness…. and that’s okay, I’ll get out. But for now I think I’ll sit here and cry and let these thoughts out…. 

When we first found out Christian was not the healthy baby we had prayed for, it felt completely debilitating. All of the things we had planned for our first child just seemed to diminish with each new diagnosis. I sometimes find myself feeling so incredibly jealous, sad, and a little bit cheated. I’ve been mourning in a sense these past two years. I’ve mourned for the baby I thought I’d have.  I’ve cried countless tears for the injustice of being dealt an unfair hand. I think about the child I might have had. I actually grieve for him, and feel awful for it. I have forgiven myself and know that it’s okay to grieve. This all is extremely hard to wrap my head around… still. 

Even with this dark cloud hanging over me today… I know I’ll be okay. I don’t want pity. I don’t want you to be sad for me. Just pray for me. Pray for more strength, for more understanding, and just for me to be at peace and not let the unknown of tomorrow consume my happiness today. 

 Christian is amazing at brightening my dark days and I’m sure if he could talk he would tell me to quit being such a baby. He seriously is the strongest person I know. He is absolutely incredible. I am so blessed to be his momma. 

I know everyone has battles they are fighting daily. There is no scale. My battle is no more significant than yours. So if you are battling something today and feel like you are alone or will never win this battle… you are wrong! 

We WILL get through it. Just hang in there. 💕
It’s so hard to talk sometimes. I’m thankful for this blog. Helps me get my thoughts out of my head so they don’t consume the last bit of sanity I’ve been clingy to. Thanks for reading my ramblings. 

Been a while since I’ve updated everyone! Christian is doing really well! Still can’t believe our baby boy turned two years old on May 11th! He has come so incredibly far in these last two years. 

At the moment our biggest battle is the seizures. He is still averaging around 30-40 a day. We are hanging on to the hope that the cbd oil will be our miracle we need, just taking some time to get the correct dose for Christian. 

Christian has been doing so many new things! It’s such a blessing to see him progressing! He can now sign the words ‘eat’ and ‘more’. He has been doing really great with eating! He still has his moments where he gags however, we are able to get him to eat a little more ever day! His absolute favs are avocado and mangos! 

Christian just got his very first set of wheels too! He isn’t too crazy about his wheelchair but he has warmed up to it a lot in the last few weeks! It definitely helps Chris and I get him around so much easier.

We just found out that his MRI has been scheduled for July 21st. We are praying the shunt is still functioning properly and that the cysts in his brain have not grown. We will see his doctor July 24th to discuss the MRI results. Asking for prayers that the MRI goes well and the results are the best case scenario, No changes! 

I want to thank everyone who has supported us since day one. It’s been a tough road for our little guy… by the grace of God we have made it this far and we won’t stop! Christian is truly a miracle. He is my light, my life, my hero. The abundance of support, prayers, and love from our family, friends, and even strangers over the last few years have been incredible. 

Thank you all. 

We love you all. 

God bless. 

https://youtu.be/-jSpIW6T-yI Christian’s two year video!

It’s been a while…

I haven’t blogged in over 6 months! Been keeping family and Facebook updated but thought I would get back to Christian’s blog today! 

It has been a busy 7 months! 

Christian has been doing sooooo many new things! He has started eating some solids. He is moving around all over the place. He isn’t crawling yet but he is able to get around for sure! He hasn’t said his first word yet but has been making many new sounds. He just recently began using AFO braces for his feet to help strengthen his legs to prepare to hopefully walk one day! He was also fitted for his first wheel chair. We should be getting that in the next few weeks. Even though our goal is for him to walk one day, we also have to prepare for the fact that he may not be able to walk unassisted and that’s okay! Our ultimate goal is for him to be as independent as possible and a wheel chair will give him that independence if needed,  so we are excited for that too. Last Friday he had ear tubes put in because he was constantly having ear infections. His left ear failed the last hearing test he had before surgery. We will be going in for a follow up hearing screen next week and are praying his hearing has returned in his left ear , however if not, we will cross that bridge when it comes and look at options to help him hear from that ear. 

Our biggest issue we are fighting at the moment are these seizures. His daily average has jumped back to anywhere between  50-80 a day in the last few weeks. With him being on the move now he has bumped his head and fallen over countless times due to the seizures. We are so afraid of him being badly hurt in one of these falls…. We have been under the impression for months that Christian would be a part of a cbd oil trial held at Chkd. Unfortunately we have heard nothing in several weeks about it and we just can’t afford to wait any longer. After countless days/nights of researching, reading, and reaching out to other families… We have decided to purchase the oil ourselves from a highly reputable company that has helped countless children beat these nasty seizures! Even better we have talked to all 6 of Christian’s specialist doctors and they are all on board and supportive in us trying this new medication for Christian. We are currently weaning Christian off of Depakote (one of two seizure meds he is currently taking) we will be keeping him on the keppra (his other seizure med) until we start the cbd oil we will see how that goes and may or may not wean him from the keppra as well, really just depends on how the cbd oil works once he starts taking it . We have two weeks left and he will be done with the weaning process of the depakote and we will immediately follow with starting the cbd oil. We have decided to go with a company called Haleigh’s Hope to purchase the oil from. We are asking for prayers that this is going to be the end of Christian suffering from these awful seizures. Even with all Christian has gone through in his short life so far, the seizures have been the absolute hardest thing for us, as parents, to go through. I’m very hopeful these seizures will be a thing of our past once we begin this new medication! 

One more big thing that’s in the works for us is planning Christian’s annual fundraising event! This year will be our first. A few months ago I started a fundraising page for Children’s Hospital Los Angeles Research team for Optic Nerve Hypoplasia, led by Doctor Mark S. Borchert. They are the leading research center in the epidemiology and management of Optic Nerve Hypoplasia (ONH). If anyone is to ever find a cure or at least better treatments or perhaps early prevention of this disease, it WILL be this team of amazing people and doctors! We will keep everyone posted on our fundraising event once we get it all planned! I have included the link to the fundraising site below. All donations go straight to the research team! Any donation big or small is much appreciated and if you can’t donate, that’s okay just share the page! 

Fundraising Page! Click Here 

It’s amazing how therapeutic just typing some words on the computer can be for me. So thank you for taking the time to read my blog! God bless! 💙

Life is tough… 

This past year has been tough. There were times I truly didnt know if I could make it through another day. I push through for Christian. Ultimately he is the one going through all the hard stuff but I can’t help but cry and be sad for him at times. Life isn’t always fair and to be honest I think it’s been really unfair to Christian. I’ve prayed so many times for God to give all his illnesses to me, I would trade places with Christian in a heartbeat…. But I can’t. I have to be strong for him. I have to take each day and make it the best day. I want Christian to have the best life he possibly can.
With all of the crap this boy goes through he smiles, he laughs … that’s enough for me. I just want him happy. I’ll spend the rest of my life here on earth making sure he continues to be a happy smiling laughing little boy. I may never get to hear him say “momma I love you”. Some children with Christians conditions are non-verbal. However, when he wakes up and I say good morning to him and he smiles like he has hit the jackpot just hearing my voice, that’s him telling me, “I love you momma”. That’s enough for me. He may never run or even walk unassisted. He may never get to do a lot of things that I’ve always dreamed my child would do… But that’s okay, that’s the harsh reality of life, it’s tough. The unknowns and the uncertainty of it all is overwhelming at times but I can’t focus on that. I’ve got to be tough for him. I have to make the best of it all. I have to make sure Christian is never left with the feeling he isn’t perfect. Because in my eyes,God made this sweet boy and God made Christian perfect.

I don’t want pity. I don’t want anyone to be sad for our family. Some people go a life time without feeling the true love that I’ve experienced loving this sweet boy. True love. I feel we are the lucky ones. The amount of love and support we get from family, friends, and even people we don’t know is absolutely the most amazing thing I’ve ever experienced in my life. I know we will continue to strive for the best, we will push Christian to do his best, and reach his highest potential and beyond. Christian is the strongest person I know. I am so proud to be his mom. Even though things have not gone the way I planned that’s okay. I’m thankful for every second. I can’t always say that but at the end of the day even through it all, I’m thankful. I’m blessed. I have the most amazing husband by my side, the most precious baby boy, and the most amazing family and friends. I’m blessed. I thank God everyday for it all….

Sorry for such a rambling post but these thoughts have to come out. I think I’d explode if I didn’t have this release. It’s not always easy to verbally say these things out loud. So… Thank you for reading my ramblings. Thank you for all your support and prayers, it’s what gets us through this crazy thing we called life. Thank you. God bless each one of you.

People always ask if there is anything they can do for us… Just pray. Pray for strength. Pray for hope. Pray for us. Pray for yourself. God is an awesome God , he doesn’t make mistakes.

Day one… A year later 

July 1st 2016

One year ago today our journey began…
I took Christian in to see his pediatrician. At almost 7 weeks old he was still looking very jaundice. He had just been checked the week before, his bilirubin levels were still slightly high but the doctor assured us it was due to him being breastfed. Breastfed babies tend to take a little longer to get rid of the excess bilirubin. For the past week we had been instructed to supplement with formula, to hopefully move the process along and allow his body to release the extra bilirubin faster. The doctor agreed with me immediately that he still looked very yellow. She decided as a precaution to have a full blood panel done, just to be safe. She expected to get the results back in a few days and she would call me with the results. I left the doctors and went home.

Twenty minutes after walking in the door, I got the call that would change our lives. The doctor first asked if I had made it home, then asked if I had someone else with me… My heart, I think, stopped. She proceeded to tell me just about all of Christians levels that were tested were at critically high levels. I was hysterical at this point, so she asked if I could have someone drive us to CHKD now or she could send an ambulance to get us. Luckily I was with my grandparents and they were able to drive us. The doctor told us CHKD had already been informed that we were on our way and they would be waiting for his arrival.

They preformed test after test and several different procedures on Christian, I truly don’t know how many and really wouldn’t care to count anyways. I cannot put into words the feeling of having a doctor look at you with what I think were teary eyes and say “I want to be honest, at this point we don’t know what is wrong with Christian.”

Six days after being admitted to the hospital, we finally had some diagnosis’s and over the next few weeks more were added. Christian was diagnosed with congenital panhypopituitarism, hypothyroidism, adrenal gland insufficiency, diabetes insipidus, growth hormone insufficiency, optic nerve hypoplasia, septo optic dysplasia, cerebral palsy and just recently myoclonic epilepsy. During an MRI they found three arachnoid cyst in his brain and during an ultrasound they found a gallstone. We have been told Christian is blind with possible light perception in his left eye. Christian had brain surgery at two months old to install a shunt to drain the rapidly growing brain cyst.

Before being sent home from the hospital, my husband and I were trained to give subcutaneous injections and measure out the several oral medications, how to correctly weigh and record diaper weights. I was urged to pump instead of breastfeed, to make sure we had the exact amount of milk Christian was getting. After 3 weeks in the hospital we were sent home, just a few days later is when we discovered the cyst had doubled in size, so back to hospital for brain surgery……

August 11th 2016 Christian was finally released from the hospital and sent home. We have not had an extended hospital stay since. Hallelujah!

Chris and I have grown so much in the past year. Christian has been a trooper through it all. It’s amazing being in the presence of his strength. He has motivated me to be a better person. He has pushed me to do my best, everyday. Every waking second I push myself to be better in everything I do. Christian has taught us so much already. He has taught us what life truly is all about. God has big plans for Christian. There have been times I’ve been angry and questioned God, why… I still have my moments but I truly, with all my heart, feel God is working on an even bigger plan, a plan that I cannot even comprehend, it will all make sense one day… until then my trust is in God, we will be okay.

This past year certainly hasn’t been easy but we’ve made it and will continue to grow stronger and hopefully one day have a cure for all of Christian’s conditions.

Hello again…

So… It’s been a while since I’ve written a blog. Life has been pretty crazy! Christian turned a year old May 11th! We had a HUGE birthday party celebrating our sweet boy! Our little boy was spoiled rotten with gifts! Took us two days to finish opening them all! Lol.

Christian, up until about a week ago, would only sleep 4-6 hours total at random incriminates throughout the day in a 24 hour period. We were given the okay to try melatonin at night and since starting, he’s been getting a 5-7 hour stretch of sleep through the night! It’s still not every single night, but this tired momma and daddy will take any sleep we can get! 

His sodium levels have been up and down over the past few months but have been starting to remain stable and we are back to only once every two weeks blood draws! So thankful for that! 

We have another MRI scheduled the end of August for a routine check of the brain cysts and to make sure the shunt is still operating properly. 

Today Christian had an EEG done… I was not at all prepared for how hard it is to watch your baby being strapped down and made to stay still and not being able to hold or soothe him… So to say the least its been a pretty tough day for our little super hero Christian. The test confirmed Christian is having seizures. He had several during the two hour test and they diagnosed him with epilepsy. We are thankful to at least have answers and he started a new medication to hopefully stop them. Praying they don’t get worse and we see a significant decrease soon. 

During our last visit to the neurologist, she referred us to a sleep specialist Doctor as well as another special neurologist that deals more with mobility. The doctor suspects Christian to be also diagnosed with cerebral palsy due to his low muscle tone and poor function in his left arm. 

He is still seeing a physical therapist once a week, and a vision therapist once a month. The vision therapist visits will increase once Christian becomes more mobile. She will help Christian learn to navigate the world without sight. He will start seeing a speech therapist soon to help with speech of coarse but will also help to get him eating solids. He has a terrible texture issue going on and gags with any kind of food other than baby food. We are excited to see him improve once we start that therapy.

Whew so in a nut shell, that is what has been going on over the last few months since I’ve taken a hiatus from blogging…. 

Even though things certainly haven’t been easy over the past year of my sweet boys life, Chris and I are so thankful for every second spent with our sweet baby Christian. He is a true super hero and amazes us everyday! I truly cannot wait to see what amazing things this little man will do in this life!!! 

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Today has been an extremely tough day for me emotionally… Christian’s doctor called to formally give his results to me that Christian is indeed blind with some light perception. I’ve been avoiding that word… Blind…Not that I’ve been in denial I knew it but I just couldn’t use that word it’s such a heavy word with so many emotions pouring from it. 
My son is blind…. For the first time today I said it out loud…That stings but I have to accept that and move on for Christian. I don’t want him to ever feel the pain I have in my heart for him. I want him to feel love and acceptance in all things. I will spend the rest of my life making sure he has everything he needs to meet his highest potential. I love my sweet boy so much and I’m looking forward to the beautiful journey and all the things I’m sure he will teach me along the way. 

 

Some days…

  Some days I get angry…… But then I am thankful.

Somedays it all hits me like a ton of bricks. The anger, the sadness, the feeling of uncertainty it all hangs over my head 24/7. Most days I don’t let it get to me but somedays it all just overflows and I can no longer ignore it.

  

I had a moment tonight, after getting Christian’s 8pm round of meds ready I became overwhelmed with the feeling of defeat. I wanted to just scream… I hate my baby boy has to take drugs to stay alive, I hate that he has been poked more in his short six months than I have in my entire life….however, I am thankful these medications are available to us, I’m thankful for every nurse and every doctor that has had a hand in caring for him, I’m thankful to all of our friends and family for their support since day one, I’m thankful for the sleepless nights, the never ending doctor appointments…. I’m thankful I wake up every morning to my sweet son. 

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I’ve been so busy lately I haven’t blogged in a while so I have a lot to say……

First off our baby boy turned 6months old! I can’t believe it… It feels like just yesterday I found out I was pregnant… And now he is six months old. I’ve experienced some of my most happiest days of my life in the past few months… Everyday hasn’t been easy but I’m thankful for each second spent with my boy💙

  
  

Last week we had our follow up with Christian’s ophthalmologist. The doctor preformed a VEP test to determine if information is being sent from his eyes to his brain. Christian’s optic nerve pathways are around 1mm, normal optic pathways are 3mm…. The doctor determined that the information being sent from Christian’s eyes to his brain is delayed but there is some information traveling through his pathways. At this point the doctor can tell that Christian has light perception. Although we were hoping for a more precise answer we are thankful to know he has some vision. As Christian gets older we will continue to try and simulate the vision he does have. We were told that Christian’s vision will more than likely not improve over time but as he gets older he will learn to use his vision that he does have…I know that my sweet boy will overcome any obstacle he faces… He has an army of family, friends, and two of the most determined parents behind him that will help him reach his highest potential.
I pray for a miracle every night and I know one day there will be a cure for my sweet boy. 
 

Hey again… It’s been a while 

It’s been a busy few weeks for us.Finally have a few minutes to share what’s been going on…

Our little guy turned 5 months old this past Sunday! He has started his physical therapy and in just a few weeks we have seen a lot of improvement in Christian’s muscle strength! He starts his vision therapy at the end of the month. We are hopeful that with visual stimulation we will see an improvement in Christian’s ability to focus and start tracking things with his eyes. We have the big eye doctor appointment Nov 16th , we won’t find out exactly Christian’s degree of vision but we will atleast know if there is something there to work with and then he will continue with the therapy to help Christian learn to use what amount of vision that he does have. We have seen Christian squint in the sunlight so we are very optimistic that he has some sort of vision. 

Also we have been dealing with another issue… Christian has been gaining weight alarming fast. On average in the last 2 months he has been gaining a pound a week or more. His endocrinologist had us giving 2 watered down bottles a day for the last 4 weeks, which has been unsuccessful in slowing his weight down. We had been hopeful we could wait but his doctor believes that it’s time for Christian to have a growth hormone stimulation test. After the test if Christian’s growth hormone levels rise that means his body is capable of producing enough of the hormone at this time and we can wait to start the daily growth hormone injections, if the stimulation test doesn’t increase his levels he will start receiving daily growth hormone injections. If it’s determined that his body isn’t making enough growth hormone the doctor believes it would be the culprit of the excessive weight gain. If it turns out that he doesn’t need the injections yet then we will start watering down more bottles a day to decrease his daily calorie intake. Due to his diabetes insipidus Christian suffers from extreme thirst, since he can’t tell us he is just thirsty he drinks much more formula then what he needs. I’m hopeful that his body is producing enough of this hormone for now and he will not need another injection everyday but regardless of what the results are we will be thankful that we are blessed enough to be able to have knowledgable doctors provide a solution for either scenario. We don’t know much about how the test goes yet but I have my list of questions for when they call (His doctors joke that whenever they call me they make sure they have time to talk because I ask every question imaginable, lol. But they also say they love that about me 😊). We were told that it will be scheduled as an outpatient procedure and if there are no complications we would be in the hospital for the majority of the day but be able to go home after. We are currently waiting for the hospital to call now to see when this will be done. I will keep everyone posted on the results. Keep praying for our little guy! He is one tough cookie!  

  

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