MRI Results

Well... To start... Can we celebrate that we did NOT end up in the hospital in September?! Praise the Lord! We broke the track record after being admitted 3 months in a row this summer... However, it has still been another long month unfortunately. Thankfully Eli has been back to his normal happy self for the past few weeks, so we believe he has gotten over the 3 viruses he had in August! He has also FINALLY broken all 4 of his molars, which also makes him a much happier guy. While his molars are in and his viruses are probably gone... his cough has still lingered, which means that it is most likely due to his reflux. He has a pretty significant cough attack almost every hour of the day and night - these cough attacks are awful. He turns bright red, chokes/ gags, struggles to breathe, and is trying to get something up or out of his throat. Sometimes he succeeds and spits up or vomits up his feed, but often he just swallows the acid & formula back down. 

smiling at his blood draw

Part of his follow-up from the August hospitalization was to check on his blood levels. In the hospital he had a few high levels of blood work that caused the Pancreatitis diagnosis; however, they were never able to confirm that with imaging because when they did an ultrasound in the hospital his gas blocked the views... He is a very gassy boy :) In the hospital those blood levels were coming down, so when we did follow-up blood work out of the hospital we were surprised to hear that those levels shot back up high again. This led us to a rush ultrasound the day we got back the blood work to see if there was any luck to see his pancreas this time... No luck, gas was in the way again. So the next step to see what was going on in his whole GI system was to do a MRI with anesthesia. Eli had 2 MRIs in November 2016 due to his seizures and he was due for a follow-up brain MRI this November to track the progress of his underdeveloped brainstem. So, luckily with the help of our guardian angel/ outpatient care manager, we were able to get both MRIs done at the same time and only have to do anesthesia once!

The MRIs were a success and the nurses said he did well with his anesthesia. Still, it is never fun... He was very miserable waking up from the anesthesia for hours afterwards, but was back to his normal (but sleepy) self in the evening. 

The results... Well, everything in his GI system is NORMAL. Good news/ bad news. Great that this is all working properly, but frustrating at the same time to not know why his reflux is so bad. The poor kid is on 3 medications for his reflux, hooked up to his feeding pump most of the day and all night to run his feeds slowly, and does breathing treatments 3 times a day. While he had reflux as an infant, he did not from December 2016 - May 2017... So we just don't know why he has it so bad now.

His brain MRI unfortunately was very concerning. As I mentioned, the MRIs from November 2016 showed an underdeveloped brainstem at the time... This MRI showed there was no development of his brainstem since then and also no development in his cerebral hemispheres and cerebellum. So he has 3 significant areas in his brain that are just not growing (significantly smaller than other areas of his brain) and not developing. These areas are responsible for many functions of our daily lives, but the ones that are probably significantly hindering his development are: vision, motion, motor, balance, focus, nerves sent to make us breathe, and nerves sent to help us swallow... These were obviously very hard results to hear. Our neurologist is trying to focus on the positive - Eli is defying odds already and able to do a whole lot more than his brain scan shows us he should be able to do. Our neurologist also said that there is no evidence of a cause for the lack of growth... blood flow to these areas is good, no sign of stroke, etc. So we're back to not really having answers and just "blaming" these results on his rare diagnosis of MD.

As humans we try to find the silver lining... Look for the positives. As Christians, Eric and I try to find the joy of the Lord in all situations and are able to do that because of the hope we have in Christ... the victory has already been won and this time on earth is not all we have. While it is heart breaking for us to watch all what Eli has to go through, we also know that this was not God's original design, and pain on earth has a purpose. Somewhere, somehow... God is using our amazing Eli to change and softened someone's heart, to encourage someone, to strengthen someone, or to show someone what it looks like to have joy in the midst of a trial. (We all know this boy has got some joy to share!)

When Eli was diagnosed with this extremely rare type of MD, it was devastating. I saw many dreams and hopes for my baby boy's life flash before my eyes - Eric won't be able to coach his football team, I might not be able to dance with him for our mother/son dance at his wedding, he might never develop to his age level... But, we rallied and surrounded ourselves in truth and love from our family, church family, and friends. We also looked for the best in situations and celebrated every small piece of good news. While he is diagnosed with this rare form of MD, it is a type of limb girdle MD... So really it should just affect his limbs - he should still be able to have a quality life. It's not supposed to be affecting his GI system, his breathing/ lungs, and now his brain. But we will rally again. We will find the silver lining - he is already defying odds. He is happy as can be, which is only explained by the joy of the Lord in him. He is beginning to make vision connections. He's as chatty as ever (often waking me up bright and early to numerous stories). He loves to wiggle and dance. Test results can tell us one thing, but we will just push on with the happiest MD boy in the world. He gives us strength and hope. While I was crying after receiving the results... I was hugging Eli and telling Eli how much we love him and how we'll do whatever we can for him... and he just sat in my lap laughing and smiling. So we're going to "pull an Eli" and just laugh and smile... and take one day at a time with our miracle boy. 

So what now? In the immediate we are trying to get his reflux under control. We're switching formulas again (the real food blend formula made him vomit almost every time) and I'm going to be making some thin purees to go through his g-tube so that he can try real food in his stomach. We're also in the process of getting our specialist doctors to agree on a second opinion location. We are trying to find a team of doctors who have at least heard of his type of diagnosis or maybe have even have seen someone with his type of MD. This will mean us traveling somewhere in the near future, but hopefully we can find a team of doctors who can give us more information on his type of MD.


Praises!
~Eli's already defying odds!
~Eli is happy as can be.
~Ava is the sweetest and a relatively happy baby (and still a great sleeper at night!)
~Eli's vision seems to be coming back! He is definitely seeing some things and making intentional glances at voices, people, sounds, and objects.
~For Kathy, our guardian angel/ outpatient care manager... she helps us navigate through everything and always wants the best for Eli.
~Eli's amazing Early Intervention therapists who always believe in him, push him, keep us hopeful, and offer up their ideas to help.
~Britta's work being so understanding and helpful with my transition back to work and future doctor appointments for Eli.

Prayers:
~Finding a second opinion team of doctors with experience in Eli's type of MD
~New formula and real food being the answer to stop Eli's reflux
~Britta going back to work in 2 weeks... finding peace and comfort about leaving my babies, and hopefully having Eli be in a more stabilized state for our nanny
~Eli's overall development and growth.
~Sleep! While Ava is only up once a night :), Eli keeps us up every hour or two with his coughing and gagging.

Hebrews 13:5b “For God has said, ‘I will never fail you. I will never abandon you.’”

2 Corinthians 4:17-18 “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

fun at the lake with my best buds!

first early intervention play group!                       

                      

 time in NE visiting friends & family!