Just a week later, I was on Spring Break from school, so I got to spend lots of time with my babies! We took a quick trip to MN to visit Nate & Meg, tried to spend lots of time outside (bundled up - where's Spring?!), and relax a little :)
At the end of my Spring Break, Eli had his 4th brain MRI. It was an early morning, but a pretty quick procedure. He did MUCH better waking up from anesthesia this time. We waited in recovery for about an hour (like normal) for him to wake up, make sure his breathing was OK, and that he tolerated his feed... In the past, he is still pretty cranky for a while, but this time, as soon as I started rolling him out of the hospital he was cooing! Back to his normal self as soon as we got home.
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| Put your feet up and relax bro! |
The next week, we had Eli's MDA Clinic that is run by his neurologist - who specializes in neuro-muscular diseases. His neurologist filled us in on his MRI results, which showed that his brain has stayed the same since September 2017. Good news/ bad news. It is great that his brain has not continued to shrink, but we would obviously like to see some growth. However, these results make sense to us because we haven't seen any significant developmental changes (good or bad) in Eli. From this clinic we were also given some follow-up tests to check up on Eli... 1) We will be doing a swallow study to check the functionality of his swallow. He passed a swallow study on 2/14/17 and he was doing some purees by mouth last Spring; however, a lot has changed since then. He has not had any food by mouth since May 2017, he often seems to forget to swallow, and he sometimes chokes/ coughs on his silva/ mucus. So an updated swallow study will be helpful to see how he is managing all of this. 2) We will also be doing Eli's first ever sleep study. This is something our pulmonologist warned us we would eventually have to do, but said we would probably want to wait as long as possible... Essentially in case the results show us that there is some scary or worrisome breathing while Eli sleeps. He has been doing lots of gasping in his sleep at night, so we just want to make sure he is taking in enough oxygen all night long.The weekend of 4/7 & 4/8, Eric was out of town for a wedding and Eli had some vomiting, but seemed still happy. We occasionally have vomiting as we are changing and increasing his diet. However on 4/9 after falling asleep, he woke up vomiting and couldn't stop for about 45 minutes and it ended with him having a short seizure. Luckily we didn't end up in the ER and Eli was able to fight the quick stomach bug at home for the week... but we were left with an exhausted little guy and are still trying to work back to his normal feeds (and get back to trying to increase his calories).
We recently got back from our trip to the National Institutes of Health (NIH)... I will try to get another blog update up soon about this trip! We learned a little and made some great connections with doctors.
Praises:
~Brain not shrinking more!
~Trip to NIH
~Great medical team working with Eli
Prayers:
~Favorable swallow study and sleep study results
~Receiving an answer from our insurance about Mayo Clinic - we are still waiting to hear if they will approve us to go there for a second opinion
~Putting some weight on Eli... He has not gained weight in a year, but he has recently started getting a little longer. We want to continue to make sure his nutrition is enough to help him continue to grow and hopefully develop more.
"O Lord, our Lord, how majestic is your name in all the earth! You have set your glory above the heavens. Out of the mouth of babies and infants, you have established strength because of your foes, to still the enemy and the avenger. When I look at your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, and the son of man that you care for him? Yet you have made him a little lower than the heavenly beings and crowned him with glory and honor. You have given him dominion over the works of your hands; you have put all things under his feet, all sheep and oxen, and also the beasts of the field, the birds of the heavens, and the fish of the sea, whatever passes along the paths of the seas. O Lord, our Lord, how majestic is your name in all the earth!" Psalms 8
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| Story time at the library |
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| Easter 2018 |
MDA Green Day - March 16, 2018
