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Friday, July 06, 2007
A Watched Pot Never Boils...
...and a watched toddler never pees! Today Eli and I started potty training. Today was the start of something that will carry him during the rest of his life...sure that's no pressure on me as a momma! :)
Eli and I have done the cold turkey intense potty training method. I gave him a ton to drink--as much as he wanted--and we were on the potty AT LEAST every 15 minutes today...Remarkably, he only had 4 accidents all day which was much better than I expected...but it was a long day of waiting. This was a completely new experience for him and he was so determined to figure it out and get a treat.
Eli sat on the potty and tried and pushed for up to 10 minutes with a patience that I found convicting even to me (There are so many things I get to learn from my child.) We both watched and looked and waited...When nothing happened Eli would look at me sweetly and say, "Heeelllppp?" I just encouraged him on and we talked about fountains and pee pee and what not...
To pass the time Eli made up many great chart topper songs...all of them were creatively crafted on the subject of peeing in the potty. Sometimes they were simple songs and very focused..."Pee pee, pee pee on the potty..." Other times they were much more complex and Eli would sing about the process putting to song the words I used to encourage him, singing about all the other people and Elmos and Big Birds we know that pee pee on the potty, then there would be a triumphant ending about a fountain and a HUUUUGGGEEE chewy (i.e. a starburst or tootsie roll) and then he would laugh. Next I'd hear the quiet of concentration. Silence...more waiting...
The few times Eli did have an accident were times when I was not right with him watching him. He would run into another room and pee...uh oh. This futher solidified my hunch that a watched toddler never pees. Once I caught on to this, I kept a very short leash on him which has helped a lot. Eli can feel himself start to go so if I am right by him he will look at me and say no (as if trying to tell himself) and then I wisk him away to sit on the potty...So, keeping a close eye on him at this point in the game has proven to be very beneficial because a watched toddler never pees...at least my watched toddler. Now of course things can't stay like this forever...but let's be realistic it's only day one...we'll get there ;)
There were many Teddy Gram casualties rewarding Eli's 'dry- checks.' It took literally all day...but praise God on our last shot for the day to sink the cherrios Eli streamlined his determination. It finally clicked and Eli's face lit up with excitement and pride. Then it was off to the phone where Eli exclaimed with great joy to all listening, "I pee peed on the potty!" We all were proud!!!
Each time I used the bathroom today I did so with a new appreciation and with much wonder and awe...I never realized what a miracle it is, definitely no small feat to make all this work together. I share a new admiration and appreciation for my parents...my success today encouraged me for Eli's success tomorrow. It something easy to take for granted. Next time you flush, say a prayer and thank God for giving you parents who loved you and took the time and patience required to teach you what you needed to know...
Eli and I still have a long way to go but we both share the determination and thankfully both seem to have the patience this potty business requires, I know that is grace. We had a lot of fun today and definately made some great memories...what a season of change and making big steps and new beginnings. It is an exciting time in the Buffington home.
Labels: Eli, potty
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
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
