Sunday, May 20, 2007
Update on Eli
Eli is continuing to make good progress. We went to see Dr. Kojic, his neurologist this week. She was very impressed with how well Eli was doing. He is such a fighter and very determined, this has been very helpful for him given all the things he's had to fight in the nearly three years of his life! Dr. Kojic put it well when we walked into her office Tuesday: "Of all the children this could happen to, why did it have to be our Eli!" I agreed completely...none the less it did happen and now we must 'walk through it' literally.
The good news continues to be that Eli will recover fully from this condition. The not so good news that we learned on Tuesday is that this might take much longer than we originally expected. The two to four week prognosis we were given was apparently for Eli to simply be feeling better and not 'sick and achy' any more. It will take much longer for the repercussions of this to resolve. Dr. Kojic said to expect anything from a few months to as long as a year for Eli to be fully recovered.
This is a big set back because in this time it will be hard for Eli to continue to progress forward as he needs to. But we will keep working and keep trying and keep fighting. Eli is already in therapy and this will continue. This will surely help him to regain the strength and coordination that he needs.
The reason this is such a long process is this: The way his immune system responded to the virus was by attacking the cerebellum. This caused inflammation on his brain, concentrated in his cerebellum. The virus has most likely left his system, but it is the inflammation that will take so much time to resolve. Until the inflammation is completely gone, Eli will not be able to have the coordination and function that he needs. The two largest areas this effects are Eli's ability to walk (among other gross motor movements) and Eli's ability to annunciate his words clearly.
Thankfully Eli is able to function quite well. He is walking now, but it is still unsteady. He looks a bit like Frankenstein when he walks, a combination of that and a baby when they are just learning to walk. He can get around now which has provided much relief for us both. He still tires easily and has to take breaks and rest regularly but his stamina is continuing to improve.
We have had to alter our days and adjust how we spend our time. We play with bubbles a lot and the tent filled with balloons has remained a favorite playtime activity. Eli tries to walk down the grassy hill near our house but has since discovered the delight of rolling down the hill--a great activity that he 'can' do now since walking down it is very difficult for him, as he discovered the hard way.
Eli has continued to be filled with joy as he usually is. He definitely has his little Eli charm and personality back which I am more than grateful for. So here we are now, just 'walking this out' literally one step at a time...this has proven to be a very good pace for us in the past three years...
Thank you again for your continued prayers for us in this season... And thank you Lord for continuing to provide for Eli and me everything that we need. Thank you for this good work of healing you are doing in Eli's body and are continuing to do in our hearts. May Your Kingdom continue to come and Your Will continue to be done on earth as it is in Heaven.
Labels: Eli, medical, Post Viral Cerebellitis
Thursday, May 03, 2007
More on Eli
We are home from the hospital now. I am seeing this is definitely a 'one day at a time' process. Yesterday was a long day. Eli was not doing as well yesterday as he had been in the past 2 days. He got very sick in the morning and threw-up everywhere and then proceeded to sleep for over 3 hours in my arms on the smelly couch. I could tell he really didn't feel good, which is definitely hard on a mother's heart. Today he has been pretty subdued all day. He is sleeping now. He seems very content when he is resting which is good since sleeping is the best thing for him right now...
I want to share a few pics of the past few days. You can see here how much he has improved, but he still has a long way to go. I hope to continue to keep you updated on his progress.
Eli while he was in the Emergency Room last Saturday:
Eli resting in the hospital:
The hospital had wagons that the children could ride in. Eli really enjoyed his wagon outings, although they really wore him out. He loved riding the wagon in the Elevator so much that he is still talking about it today!
Now that we are home I am trying to find creative ways to make playtime fun for him. Since his mind is working great he still needs/wants to be stimulated and play. Yet he is very limited in what he can do and handle. He can only handle playing for about 15 minutes at a time, then he needs to rest. As a way to make his playtime more special for him, I set up Eli's tent in his room and filled it with balloons and some of his favorite books. Eli rested his back on a big pink balloon and had a wonderful time playing in his new special place.
Thank you again for your continued prayers, they are much needed and much appreciated.
Labels: Eli, medical, Post Viral Cerebellitis
Monday, April 30, 2007
More prayers for Eli...
Please pray for Eli and a quick recovery. Early last week he came down with common cold symptoms (runny nose, coughing, slight fever). As the week went on it got gradually worse, but still all common to a simple cold. Last Saturday morning when I got Eli up and put him down to walk, he took a few steps and then fell down. He was very lethargic and just did not look right. I have seen him sick and seen him with a cold but this time he just looked different. His eyes only opened about half way and he was not able to walk. I realized there might be something more than just a common cold going on. After checking with Eli's neurologist I was told to take Eli in to the Emergency room ASAP.
Saturday was spent in the ER for most of the day. They did a ton of tests including a Spinal Tap which was all quite exhausting for both of us to go through. They knew he was very sick but were having trouble pinpointing the cause. They admitted Eli and he has been on the 'acute care' floor ever since. Yesterday consisted of more tests and blood work. Eli had an EEG done on his brain and a two-hour long MRI scan done on his brain, neck and spine. It was a long day. Eli did not move his limbs much at all yesterday, still was not walking and he spent most of the day snuggled in my lap resting.
Today was a day of waiting for results. By process of elimination the doctors all seem to agree that Eli probably has what is called
Post Viral Cerebralitis (the neuro-surgeon also said it might be a post viral encephalitis)
. Because the other tests have continued to come back negative and all of his symptoms point to this, it seems that PVC is the most probable cause. The doctors are continuing to look further into it though to make sure they are not missing anything.
Post Viral Cerebralitis occurs when a virus (say a common cold) gets into the cerebellum in the brain. This can either mean that the virus itself is hindering the cerebellum from functioning properly or that the bodies own immune system that is fighting the virus is also attacking the cerebellum thus hindering its function. (I've had a few different explanations from the doctors and am still a bit unclear on the cause--will ask the doctor for clarity tomorrow.)
The doctors have said that one reason Eli might have gotten this is because when there is an injury on the brain the blood barrier that protects the brain is weakened causing the brain to be at a greater risk. Although the doctors are not certain if Eli's brain injuries are directly related to his present condition or not. There is really no way to tell.
The average recovery from PVC is about 2-4 weeks, but they were careful to say that every case is different and Eli is unique. They are going to continue to watch him closely. Since the cause of this is viral there is not much they can do to treat it. They will continue to monitor Eli closely and make sure he is getting everything he needs for his little body to heal. As he continues to improve and grows stronger and more stable on his legs they will let us go home. We are hoping this will be soon, in a couple more days.
In addition, during all of Eli's scans they found that the 4th ventricle in Eli's brain was slightly enlarged with fluid. At first this was a cause for great concern, but after the neuro-surgeon was able to see Eli's brain in more detail through the MRI he has since said that there is not cause for immediate concern or action. Eli will not need surgery but they will continue to watch him closely and make sure nothing else develops. At first the doctors were not sure if the pressure from the slightly enlarged ventrical was what was hindering Eli from walking, but the neuro-surgeon thinks the enlargement is not significant enough to cause these symptoms. (A huge 'praise God' in our day today!!!)
Today I saw much improvement in Eli. He began eating (although it wasn't much-but any food at all in his tummy is an improvement!) He still is not able to stand unassisted for long or walk. But he was at least much more alert today. He is slurring his words a bit but still trying very hard to talk. He was quite expressive to day. Even though his body still was not very active, it was quite clear that his mind was sharp. Eli's charm and sense of humor was evident to all today. He melted many hearts, including and probably most of all mine. I am so proud of him. He has been such a trooper through all of this. He is so strong! God is covering us both in such grace. To all of you who are already praying, thank you. To those of you who are just finding out about this for the first time, please pray.
This is yet again another way that God is making the sufficiency of His grace known and evident to Eli and me. Please pray for us to continue to be covered in His grace in every way we need. Pray for Eli's complete healing and recovery. Pray for wisdom for the medical team as they treat and care for Eli. Pray for me, I am feeling very tired. I need stamina and energy. Pray as you are led. Thank you so much. I will try to update again as I know more (and as I have the time and energy needed to do so).
Labels: Eli, medical
