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Thursday, August 31, 2006
More Tests...More Prayer
I just recieved a difficult phone call. It was Dr. Kojic calling with the results from Eli's MRI. His previous MRI, a year ago, showed much improvement on Eli's injury, I was very hopeful for similiar results this time.
The doctor said comparing these two scans was a bit like comparing apples to oranges. The machine we had this recent MRI done on was much newer and had new higher definition technology. We were able to see much more detail as a result.
Dr. Kojic said she saw more scaring on this scan than the previous scan. She is hopeful that it is not new damage being done but she wants to rule out all possiblities. This means we go for more tests. We are going to the hospital to have exstensive blood work done to see if there is any other underlying cause to the damaged tissue on Eli's brain. We are also going to repeat the MRI in 6 months to see if there are any changes.
We all expect these new scars to have been from the accident. They are probably just showing up because of the new more sensitive machine, it is still very disheartening. My heart breaks for Eli and all he is going through. Please continue to pray for him, for his healing and for anything we are missing to be revealed to us. Pray that God protects him in the meantime as we try to figure all this out. Just simply pray for us. I am at a loss now for words. I do not know how best to tell you to pray- so let His Holy Spirit guide you. We need prayer, this I do know.
Wow, this is just quite a shock to me and much to process. I so strongly want Eli to be whole and healthy. I know God is faithful to complete the good work He began in Eli.
As for the MRI itself, thank you greatly for your prayers for us on Tuesday. It was a very long hard day. We felt your prayers and knew exactly where all the strength and grace that carried us came from.
Please keep us in your prayers. I will keep you posted on what these new tests show. One day at a time right?!?... It is His daily sufficient grace we rely on, thankfully it is sufficient for today, for each day!!!
Lamentations 3:21-25, "Yet I still dare to hope when I remember this: The unfailing love of the Lord never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, "The Lord is my inheritance; therefore, I will hope in him!" The Lord is wonderfully good to those who wait for him and seek him."
Monday, August 28, 2006
MRI Tomorrow
I must keep this brief because I am very tired tonight and we have an early morning and long day tomorrow. We get up extra early to eat breakfast since Eli has to be fasting for a number of hours before the MRI we have scheduled for tomorrow. The procedure is at 11:00 but will take most of the day since he will have to go under full anesthesia for the scan.
Please pray for a quick recovery for Eli and that he is safe through out all our day will hold tomorrow. Pray for no complications and for accurate results. Pray that the doctor would have wisdom in interpreting the results. Pray that Eli will have grace and in some way the understanding he needs to cooperate with all that will be going on for him tomorrow- may he be comforted throughout the whole process.
Pray for Barb and me as we go with Eli, pray that we will have the energy and grace Eli will need us to have especially after he is coming off the drugs and is groggy the rest of the day.
I will keep you posted on the results once I hear of them. Pray that God prepares me for whatever the outcome. Thank you so much for standing with us- we continue to need all the prayers we can get. I can see God is using them mightily. Thank you. May you be rewarded 1000 fold for your kindness to us. Amen.
Wednesday, August 23, 2006
Finger Lickin' Good
Eli has never really enjoyed food or eating. Even as an infant he wouldn't have ever eaten if I didn't make him eat. He was not a baby that wanted to nurse all the time. That hasn't changed as he's grown. Mealtime is generally more of a chore and an interruption to his day.
It is hard work for Eli to eat. It was only a few months ago that he mastered the skill of feeding himself things like cheerios and other finger foods. We work on feeding skills in therapy each week. His therapist has begun by trying to spark an interest in Eli for food. She encourages playing with food! Who knows, maybe we are starting all kinds of bad habits he'll have to break before he goes on his first date or meets his girlfriend's parents for the first time- but we have plenty of time before that ever happens, hopefully!
Eli's plate has become a smorgasbord for his imagination. He pretends his cheese has become a balloon, his watermelon chunks have suddenly morphed into cars and tractors, his plum slices are now boats, (Yes, Eli made all this up on his own!) his turkey slices have become airplanes, and he builds a great tower out of his kiwi slices.
Amazingly this tactic has really helped Eli to become more interested in food. Not to mention it is quite entertaining for us both. We laugh a lot more during meals, which is wonderful since at one point they were very challenging for both of us. I am hoping his new interest in food will help him gain the weight he needs to gain.
We made a good stride towards weight gain today- one step at a time right. Eli and I made brownies together for the first time. He helped me pour in the oil and water and then he had a big spoon that he swirled around in the mix. He thought it was great fun, all until he got a little on his finger.
You see, Eli hates to get dirty- I know it's just a matter of time before that completely changes, but for now nothing irritates him more. So when he was freaking out at the brown mystery substance invading his finger I just told him to lick it. Looking at me in bewilderment he gave it a try and then immediately asked for more- smart kid!!!
At this point it was time to put the brownies into the oven and not on Eli's finger. So I told him to wait on the counter while I put the brownies in to bake. When I looked back up at Eli he had already made his plunder. There he sat, perched on top of the counter in his pajamas with evidence written all over his face. He took the giant spoon we used to stir the brownies and shoved it into his mouth...and all over his face. He thought it was the most wonderful experience.
He was so stinkin' cute and enjoying himself so much that we laughed and I let him go right on ahead and enjoy licking the spoon, on one condition- that I could take as many pictures of the event as I wanted. We both were very happy. It was such a fun morning. Eli was covered in brownie batter literally from head to toe by the time it was all over- but it was so worth it.
I remember licking the spoon was always a big deal for me when I was a kid. Well, actually it was still a big deal the last time I baked something, when was that...oh ahhh last week- but now times have changed. It is time to pass on my spoon licking joys to my son. What a special moment in time. It is like handing off the baton, only, it is a spoon. Eli will now be getting all the batter covered spoons in this house. More power to him. Ahhh, the simple pleasures of being a kid...and being a not so adult, adult.
Thursday, August 17, 2006
Eli Update
Our doctor appointment went very well yesterday. One thing I love about Dr. Kojic is how calm and laid back she is. Everyday she deals with children who have seizures. She does not panic with each one, therefore she is able to be a reasonable voice of encouragement to us parents when we bring our children in.
I was encouraged by our visit with her yesterday. She basically said that the medicine Eli is currently on, Topamax, is not working well for him. She called these seizures 'breakthrough' seizures since they are breaking through the barrier the medicine lays down. She didn't think they were caused by his condition worsening. She thought the simple answer would be switching medication.
So here we go again. We started the new drug last night. We will stay on the full dose of Topamax while we gradually increase the dose of the new drug. This means that in 2 1/2 months Eli will be on a full dose of two medications. Then at that point we will slowly wean him off of the Topamax and he will maintain the full dose of the new drug.
I am hopeful that this new medication will work well in protecting Eli from seizures. In addition the new drug is appetite neutral. This will hopefully help Eli to start gaining the weight he needs. Eli has progressively been losing weight since January. I was disheartened to find at his latest weigh-in yesterday that he had still lost more weight. Please pray for Eli's appetite, that he gains the weight he needs to gain. He is healthy and thriving, but I want this to continue. Please pray for Eli about this as well as the seizures.
Dr. Kojic also wrote a prescription for Eli to get another MRI done on his brain. She wants to get a closer look at his injuries and how they are healing. We had one done about a year ago and it was quite an ordeal for Eli. Since he is so young he has to be sedated for the procedure. I will schedule the test soon and surely put out another prayer request as that test approaches.
Thank you for your continued prayers for us throughout this hard season. It has been scary and challenging but by the grace of God we are making it through one day at time. Please keep covering us in prayer as right now it is much needed. I came down with a fever last night which I believe might be in part due to all the stress of handling this with Eli. Pray for my health and strength so I can be here for Eli in all the ways he needs me right now.
Bless you all. Thank you for the blanket of prayers over us.
Tuesday, August 15, 2006
Still Praying
Eli had another seizure this morning. We are going to overcome this. Please continue to pray for Eli and for his quick recovery. We go back to see Dr. Kojic tomorrow. Pray that she will continue to have wisdom on how to best care for Eli. We need your prayers. Please ask your friends and family to pray for Eli as well.
Psalm 34:1-10,
"I will praise the Lord at all times. I will constantly speak His praises. I will boast only in the Lord; let all who are discouraged take heart. Come, let us tell of the Lord's greatness; let us exalt His name together. I prayed to the Lord, and He answered me, freeing me from all my fears. Those who look to Him for help will be radiant with joy; no shadow of shame will darken their faces. I cried out to the Lord in my suffering, and He heard me. He set me free from all my fears. For the angel of the Lord guards all who fear Him, and He rescues them. Taste and see that the Lord is good. Oh, the joys of those who trust in Him! Let the Lord's people show Him reverence, for those who honor Him will have all they need. Even strong lions sometimes go hungry, but those who trust in the Lord will never lack any good thing."
Monday, August 14, 2006
Jamaica Mission Pictures
These are some of my new friends from Ellerslie Gardens in Spanish Town, Jamaica.
The children loved having their pictures made. After a picture was taken they'd all shout, "see me dat, see me dat!" and crowd around the camera. This was moving as I realized most of these children did not have access to a mirror. This was one of the rare occassions they got to see what they looked like. Yet none of these children showed any glimpses of self-conciousness. There is much we can learn from the children at Ellerslie Gardens.
Most of these children had little than the clothes on their back, few didn't even have that. The lucky ones maybe had one toy. Two young girls proudly showed us their toy cell phones and a few of the boys had a ball they kicked in a nearby field. Yet dispite having little these were some of the richest children I have ever been around. They were filled with joy. Another 'Mother Teressa' named Pearl works for Food for the Poor serving in this community. The children greatly respected her. She had them recite their country's pledge and sing their national anthem. This is a feat I bet many of our American children couldn't even do so well. Yet they were so proud to show us a bit of their heritage. This was simply amazing and very moving.
We stayed in a functioning convent with real nuns! I thought this was really neat. The place was beautiful and very peaceful. The presence of God was strong there. I must share one funny thing about this place. All of our meals were cooked by the nuns at the convent, this was some of the spiciest food I've ever had in my life. I never imagined I'd eat the spiciest food of my life in a convent cooked by a nun. My images are being stretched. The food was great and I was grateful for the opportunity to try new things and flavors, including goat which glowed florescent green. It actually wasn't so bad. It was fun to eat some of the things the locals enjoy.
Speaking of food, this was a Food for the Poor mission. We had the privilege of serving the homeless breakfast. For most there, this was their only meal of the day. I was impressed that although most of these people had nothing, they still had manners par to many people I see here in the states. Everything was 'miss' and 'thank you'. It was obvious that these people were litterally starving, yet each waited patiently for their turn to recieve food and hot tea. This was very humbling to me for the next time I'm complaining of hunger.
This is a good friend Miriam. I met her while we were serving breakfast. She has been at this homeless shelter for 11 years. She didn't speak much but her expressions said it all.
I asked Miriam if I could take her picture. Once I did, I showed her the picture and told her she was beautiful. She looked at me, eyes wide, as if that was the first time she had ever heard those words. The humbling part is, it very well might have been the first time she has known she was beautiful. I love Miriam and wish I could tell her she was beautiful everyday. She is one of the most beautiful people I have ever seen.
We visited a home for children who were rejected and basically dumped because they were not normal. Here is one of our group members, Craig, praying for a beautiful little girl whose smile would light up even the darkest room.
Ahhh and Chicken Foot, he was our comic relief in the midst of all this heartache we were seeing. This man, called Chicken Foot, was filled with the joy of the Lord more than any person I've every known. He is blind but he has a keen sense of touch. He loved to play a game with anyone near him. This is his game: he'd grab your arm and slowly tap it while counting one...two...THREE!!! On three the person he was touching was supposed to scream as if they were very surprised. This sent Chicken Foot into hysterics. The louder the reaction, the harder Chicken Foot laughed. His laugh was more contagious than any laugh I've ever heard. We laughed good long and hard that morning with Chicken Foot and are better because of it. Chicken Foot plays this game all day, everyday. This is his life, this is his gift: laughter.
This is Evelyn. She works at the Goldenage Home. She is with people who cannot care for themselves all day and every day. She is a selfless servant doing very hard work bathing, feeding and caring for elderly and mentaly dissabled people. She greated us with a spring in her step and a smile on her face. When I asked her if I could take her picture she said I could only if I let her sing for me first. I sat beside her on the bench and we had church! She sang one of the most beautiful songs I'd ever heard about serving God with joy. Her life was her song. I want to make mine this song as well.
Sunday, August 13, 2006
Still Faithful
Eli is so strong. God's power and strength displayed in his not so little life never ceases to amaze me. He is a fighter. He has made it this far in large part due to all of you out there who are fighting for him in your prayers. Thank you for continuing to stand with us on this front.
God's victory song can be sung yet again over Eli Jones. At his EEG, his tech said that he was the best 2 year old she had ever examined. She then wondered if it was because he has had so many EEG's that he was used to the routine. Whatever the reason, I call it the grace of God.
God gave me the wisdom to call all the wires on his head a hat. Eli likes hats. Once he got used to the idea of this being a 'special hat' he cooperated with the tech and let her cover his head with the wires and gauze. Then he fell asleep within about 5 minutes of the test beginning- perfect. Eli was so soundly asleep that it was hard to wake him up when the test was completed. God granted him with peaceful rest even despite all that was going on around him.
God surely answered our prayers for Eli over the last few weeks. When I got the results from Dr.Kojic about Eli's EEG she said that this scan looked ever better than the last scan we had in January. Eli is continuing to improve.
This was God's way of encouraging us that He is still faithful in Eli's life. He is still continuing this healing work He has begun in Eli. A few little seizures are not going to steal our joy or shake our faith. God is much bigger than these seizures and He is Lord over Eli.
We increased Eli's medicine and he has responded very well to the new dose. He has remained seizure free ever since the increase. Eli even made the transition to the new level of medicine better than he usually does. I didn't see a spike in the side effects as greatly as I usually do when we up his dose. Again God has shown His faithfulness and goodness to us.
Eli still needs your prayers. But more than that I ask you to cry out to God in thanksgiving for Eli's life and healing, for the good work God has begun in Eli. May his life ever bring God glory. May God's power evident in Eli bring Him much praise and adoration. God is good. Jesus is Lord. Oh come let us adore Him!!!
Sunday, August 06, 2006
Battle Drum
Eli's birthday festivities are over for now...till next year. He had a great birthday this year. For the first time he understood the concept of presents and that they were for him and a ton of fun to open. He got so excited about throwing the tissue paper up into the air and watching it gently glide down with the grace of a snowflake in December. (Living in Florida I don't know much about snowflakes- but it sure makes for a nice poetic line)
Eli got many wonderful gifts this year. He was blessed by them all and will surely enjoy exploring the ins and outs of all his new toys. One toy in particular has already provided hours of stimulation for his imagination and cranium. It is a Noah's Ark set made by Fisher Price. A cute replica, all though quite a bit smaller then the original and it is made of plastic instead of the super boiant gopher wood.
When Eli first started playing with the ark, A FEW WEEKS AGO, I was naming all the creatures that came with the ark- you know the usual: giraffe, elephant, zebra, lion, peacock...when we got to the little man I confidently told Eli his name was Moses. Eli was very conviced by my confidence that this man was indeed Moses. So for weeks we reinstated the names of every creature on His plastic boat, including Moses.
It wasn't till A FEW DAYS ago that the thought donned on me that this is
NOAH'S ark! I guess Noah must have been busy with the whole exodus of the Isrealites, surely he must have asked Moses to drive the boat for a while to help out, after all they both have white hair, no one would notice the swap!
Moses was definately the guy that came with Eli's Ark, wait- Moses's Ark oh I mean Noah's ark! Who's ark is it anyway- this is confusing!!! It must be so hard to be two years old. I hope Eli has good sunday school teachers who can clear up all this mess!
Like Jekyll and Hyde I must change subjects to a more serious note I must share upon Let's make it more of a minor chord:
F#m
For the past month Eli has started having seizures again. We have had over a year and a half of no seizures and now here they are again! He hadn't had a seizure since he left the hospital after the accident. I honestly didn't expect him to ever have one again, he had been doing so well. So when this started happening I was quite surprised.
At first onset the seizures were suddle and very short. The type of seizures Eli has are petit mal seizures. They are not characteristic of the general more violent common siezure which cause the whole body to shake. Eli's type of seizure does more of the opposite, it cause him to freeze up and to stop all activity- often including breathing, which makes this quite dangerous.
There were times when Eli was still in the hospital that he'd start to have a seizure and the nurses would rush in and ask me to leave the room so they could give Eli oxygen and tend to him- it was always very scarry to see this happen- but I always had the nurses there who were in control of the situation. I think they wanted me out of the room more so I wouldn't panic then for their own sake of having enough room to give Eli what he needed. My point is that it is a scary thing to see happen to your child.
The good thing about petit mal seizures is that they are usually brief so they don't generally cause much long term damage. Usually the effects are more short term. Since it takes so much energy for the brain to have and recover from a seizure it leaves little left for growth and learning. This causes the child to be very tired and to function poorly. It can also hinder the childs ability to continue to mentally develope properly.
When the seizures started happening again I didn't notice them at first because they were so short. I thought, oh Eli's just tired, or he must be just staring at something. It wasn't till they lasted longer and got more intense that I began to be alarmed. Then last week while I was having lunch with Peter, my brother in law and Abby, Eli's cousin, I realized this is serious and I need to take action.
Eli had the longest seizure I have seen since he's been home from the hospital, he turned very pale so pale even his lips turned white. I kept trying to snap him out of it and nothing worked, well not immediately. It was very disheartening to say the least.
Dissappointed is a good word to describe it all. I am not disappointed in Eli, he's awesome and such a strong fighter. I am disappointed in the situation- I just thought we were not going to have to deal with the whole seizure thing. Eli's been taking medicine ever since the accident for the seizures but it has always worked. I thought it always would and all would be well.
All this has done for me is given me a call for action. I want to step up my defenses and rise up for Eli. I am asking you to do the same. Eli needs us to fight for him. How do we fight for him? He needs our prayers. We both need prayer, Eli and me. Satan is not going to steal our joy. Satan is not going to have victory in our life or over Eli's brain. Eli is already a mighty man of God. Everyday he is growing more and more into the man God has called and created him to be, I want nothing to hinder that.
Please join me in praying for Eli- for his complete healing, for his restoration and for his protection. Pray for his spirit and his heart- that it would be safe through out this whole process- through out the new waves of tests and questions this raises. As he is more and more aware of all that's going on around him, I don't want him to be crushed in this but rather let this only make him stronger and more useful in the hand of God. This is the story Eli has and may it give God all the glory for all eternity as it is a testiment of His healing power.
We go tomorrow, Monday, to have an EEG done on Eli's brain. As I have written before, these are very intense and frustrating procedures if you are two years old, if you are any age really. Eli will have about twenty five wires attatched to his head and then he must fall asleep! (Crazy, I know)
Actually, the hardest part is not getting Eli to fall asleep, it is getting all the electrodes attatched. Usually he cries so hard that by the time they start the test that he is so worn out that he zonks out with impecable timing and speed threatening even the best of sac artists.
Pray for grace for Eli as he has this EEG. Also pray for Dr. Kojic and the whole team caring for Eli. Pray that they will have wisdom as they assess Eli's situation and decide the best way to care for Eli. Pray for me also, that I would know how best to care for Eli and mother him through this.
"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." 2 Corinthian 4:8-9
Let's rise up together and fight. I was at a red light the other day behind a car with this bumper sticker, it's one that makes you go hmmm: 'There is no peace without war.' We have the ultimate victor on our side fighting with us. Let's got to war!!! The battle is already won. If God is with us, who can be against us!!!
"Dear Jesus, there are no words right to pray. I am at a loss for words. I place all my hope and all my confidence in you. You have the power to heal Eli and you have been so gracious to protect him. I beg of you to continue this work in Eli and be glorified in his life. Heal him completely. Make him into a man after Your own heart. I ask you for a complete healing and restoration of Eli. Set him free from anything that would hinder him from doing the work you have created and called him to do. He is Your child, you are his Father. Thank you for the finished work of Your cross. Now I ask that you would release more of Your power over Eli. Pour out Your Spirit upon him and bring healing to every part of his being. And if I may be so bold, let Eli be a vessel of Your life and healing to the world. It is in your powerful name I pray, Amen"
