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
Monday, May 14, 2007
With Candles?
I greeted Eli this morning with news of a birthday. You might remember a previous post around Christmas time that I shared of Eli's new love for birthdays and everything about them.
Curious George and the Birthday Surprise is still one of his favorite books. We read it many times each day. The book ends with George, the monkey, blowing out the candles on his birthday cake.
(Eli has really started to notice candles. At church he intensely watches the acolyte carry the candle up and down the isle. At home he is intrigued by the dancing flame atop the jar on the counter top. He notices candles in books, but mostly he noticed candles when they are perched upon one of his favorite delicacies in life--cake.)
I told Eli that today was a very special day, that today we were going to have a birthday party. Eli's face lit up with the news. He quickly and excitedly asked: "with cake?" and I said, "yes." Then he said with his eyes a little wider, "with candles?" and I replied, "Yeeeiisss!" He was so excited.
Then I asked Eli to guess whose birthday we were going to celebrate today. He rightfully guessed himself but I had to correct him. I told him we were going to celebrate his daddy's birthday and have a great party for him. Then I tried to explain to Eli that his daddy was having an even greater party in heaven with Jesus than anything we could ever imagine here on this earth. Eli listened, but was mainly excited to help me make the cake and lick the spoon as any toddler would be...
After Eli's nap we met AJ's parents for dinner at one of AJ's favorite restaurants, Outback Steakhouse. We had a very pleasant meal. Eli behaved very well but kept asking for cake with candles, only to be reminded again and again, "After we are all done eating our dinner..." Eli was full of joy today. I know his hugs and laughter were especially a blessing for AJ's parents. After Eli was all done eating his dinner he crawled up in Mia's (AJ's mom's) lap and belly laughed there with her leaning against her chest offering his joy and strength to her in his innocent childlike contagious way.
On the way back to the house Barb and Carl stopped and picked up just about the hugest balloon that I have ever seen. Eli was so excited about the balloon that he even walked around with it a bit, which if you've read the recent posts you know what a miracle Eli walking at all again is! His walk is still unsteady and he still tires easily but praise God he is getting stronger. Praise God he is starting to be able to walk and get around again! The balloon gave him great incentive to walk this evening, an incentive that matched his great smile and delight.
Once home, balloon in hand, we lit the candle that was in the cake and sang one of Eli's favorite songs. Yes, you guessed it...'Happy Birthday'. Then Eli helped to blow out the candle and lick the icing off of the wax stick--a very important task never to be overlooked. The four of us: Barb, Carl, Eli and me sat around the kitchen table and ate cupcakes together.
Carl's prayer summed it up as best as any could: "Thank you God for the life AJ had and thank you God for the life AJ now HAS!" What reason to celebrate. It doesn't make the missing him any less. It doesn't make it hurt any less, but there is hope there... We can celebrate in the reality of what is true! AJ now has life more abundantly than anything we can ever begin to imagine because AJ is now fully living, living in Christ, living WITH Christ in complete redemption.
After eating the cupcakes, with full tummies we sat on the couches together and watched some movies of AJ. It is still quite impossible to watch AJ so alive and not feel the lump in my throat and my eyes fill up. I'm not sure what makes me want to cry more: seeing him alive, hearing his voice and missing him or realizing that this is all that is left. That the video will always be TOO SHORT! That there will always be that longing for more...
Eli described it perfectly. He was intently watching the movies and grinning. When Eli first saw AJ's face this evening his eyes lit up with excitement and he said, "Daddy!" Once the movie was over Eli said, "more daddy?" Through tears we responded, if only it was so...we want 'more daddy' too. Eli snuggled and melted into my lap, that was grace.
The day was a special day and rightfully so. It was exactly what it needed to be. It was yet again another day covered in grace, a grace that never ceases to amaze me!
Labels: Birthday, Daddy, Eli
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
Tuesday, May 01, 2007
Eli Update
Eli is continuing to improve. The official diagnosis is:
Post Viral Cerebellitis
I had spelled it wrong on the last post. If you care to learn more and google this, you will get hits for a lot of info. It is a serious condition, but being that it is viral there is not much the doctors can do for him in the hospital. Because of this they have decided to discharge him and send us home. We are hoping to be home by the end of the day today, it might take until early tomorrow though.
The recovery will take about 2-4 weeks. We will have to be very patient and vigilant through this time. But I am grateful the doctors have given him a good prognosis of a full recovery. He can only sit up unassisted for a brief period of time. He gets tired very easily, but is continuing to improve and get stronger. Thank you for your prayers, I will try to continue to keep you updated and share photos soon.
