By the grace of God we arrived home safely. Everyone was very excited to see Arjay and they all commented on how big he had gotten! We began to see little gains as soon as we got home. It seemed as though God was teasing us! His physical therapist came over the Monday after we had returned and confirmed that his muscle tone had significantly decreased. In addition, his seizure activity seemed to lessen, he started eating solids and stopped vomitting, a persistent tongue thrust he had ( neurological/muscular disorder) totally vanished, and his attention span seems to have more depth to it.
These improvements have been slow coming but gradual from week to week. He continues to show gradual improvements, as a matter of fact , his therapist noted yesterday that his muscle tone was bordering normal! The doctors in China made it very clear to us that this was, by no means, a quick fix! It takes at least 3-6 months to see improvements except in rare cases. For Arjay, the prediction is that he will continue to see improvements as he develops as a result of receiving this intervention so early in life. We just hope and pray for his continued recovery.
Major developmental gains such as crawling and sitting have not been met yet, but we're hopeful that there's more ahead in the coming months once the cells have fully connected and have been regenerated. God has been our only carrier through this journey and I know that he will continue to carry us to the end! We can not say "Thank You" enough to all the wonderful people who have helped to make all of this possible. With the help of family, friends, and our community, we were able to raise the needed funds for our trip in a record 60 days! Now I truly understand what it means when someone says "When God closes a door, he makes sure to open a window". This whole process with Arjay has taught us so many fundamental things about life and spirituality, that it sometimes presents as a blessing! We are so thankful for all the angels we have found in you and pray that God will continue to bless you and yours abundantly.
As much as possible, we will continue to update this blog and keep you all informed with Arjay's progress. We hope we've've been able to take you, with us, on the journey of Arjay's recovery through writing. Stay blessed and please continue to lift Arjay's name up in prayers never forgetting that God is the ultimate physician!
Blesssings,
Al & Angel Wiles
Friday, August 14, 2009
Part Two! Arjay's journey to China.
That happened to be the biggest mishap we had for the rest of our stay in China. The rest of our time there went well and Arjay made it through his treatments without incident. The spinals (lumbar punctures) were a bit more difficult than the IV's. He had to stay hungry 6 hours prior, lay flat in his back for 6 hours after, and remain hungry for 4 hours after also. Because he's so young, I didn't want to take the chance of feeding him while lying down so, he stayed hungry for the full 6 hours. All in all, he tolerated it well.
We were hoping to see some really big miracles while there but reality took no time settling in the fact that this was a process. There were so many other patients there, with an array of different conditions, ranging from autism to multiple sclerosis. Arjay happened to be the youngest but there were other children as well as adults. Being in an environment where almost everyone had a condition, made me re-think the word "Normal". It seemed abnormal to not have something wrong and everyone there embraced their circumstances with an amazing arm of hope. In addition to Arjay's treatments, he also received Physical Therapy twice daily and Electric Wave Therapy/Accupuncture once daily for six days out of the week. It was intense and it made me realize how much more therapy he needed here at home.
Days turned to weeks and before we knew it, we were saying goodbye to all the wonderful people we seemed to have just met. Saying goodbye was bittersweet for several reasons.
1. Going to China seemed surreal and now we were returning to the reality of life at home.
2. We had no idea what to expect in the coming days because we hadn't seen any ground breaking improvements yet.
3. The mission was over, we had been to China, now what??!
Nevertheless, coming home to the rest of the family seemed long overdue and we couldn't wait!
We were hoping to see some really big miracles while there but reality took no time settling in the fact that this was a process. There were so many other patients there, with an array of different conditions, ranging from autism to multiple sclerosis. Arjay happened to be the youngest but there were other children as well as adults. Being in an environment where almost everyone had a condition, made me re-think the word "Normal". It seemed abnormal to not have something wrong and everyone there embraced their circumstances with an amazing arm of hope. In addition to Arjay's treatments, he also received Physical Therapy twice daily and Electric Wave Therapy/Accupuncture once daily for six days out of the week. It was intense and it made me realize how much more therapy he needed here at home.
Days turned to weeks and before we knew it, we were saying goodbye to all the wonderful people we seemed to have just met. Saying goodbye was bittersweet for several reasons.
1. Going to China seemed surreal and now we were returning to the reality of life at home.
2. We had no idea what to expect in the coming days because we hadn't seen any ground breaking improvements yet.
3. The mission was over, we had been to China, now what??!
Nevertheless, coming home to the rest of the family seemed long overdue and we couldn't wait!
Thursday, August 6, 2009
China Trip Part One!
Well.. Hello everyone. We've been back from China for about 3 weeks now! Sorry for the late update but getting things back on track here at home with Arjay has been hectic. Upon our arrival, we have had loads of appointments and therapy sessions that has kept me very occupied. I intended to update this blog while in China but unfortunately we were unable to access it from there.
The trip to China was interesting to say the least! The flight was very long but having my mother accompany me was a blessing. Arjay was a pretty good traveler! He did way better than I had expected! There were two Chinese interpreters to meet us at the airport with the hospital shuttle. They took no time in taking Arjay from me and smothering him with affection. At the hospital, we were pleasantly suprised to see other American families in addition to people from other countries as well. It was a very warm, friendly, loving, and supportive community and we all bonded throughout our stay.
Our room was very spacious equipped with a bathroom, 2 beds, a loveseat, a dvd/plasma screen, refrigerator, microwave, storage units for clothing, a phone, work station, and two night stands. We settled in pretty quickly and wasted no time in rearranging the furniture to give us a more
home-like feeling! There was a fully equipped kitchen for cooking so I went across to the shopping center "The Lotte Mart" and bought some groceries.
Arjay wasn't due to begin treatments until the following Monday, which was 3 days away, so we took that time to get acquanited with our new surroundings. Monday finally rolled around and the doctors began to order some blood work while Arjay began his therapy sessions. The nurses struggled to get blood from him because his veins are very tiny, which is something he got from me..unfortunately! However, after several heart wrenching sticks, they seemingly got enough for testing.
Arjay's first therapy session was LOUD!!! He cried at the top of his lungs and just plainly did not want to cooperate at all. His therapist, Owen, seemed a bit apprehensive to push him as hard. I guess that could also be because I was standing right there. I made it very clear to him that Arjay was there to receive an intervention at it's best so crying or not I expected him to WORK HIM!!! I hated to see him cry but we were on a mission! Around his third day he warmed up to Owen and things got better between them ! LOL
The blood work finally came back and the nurse said "the doctor would like to see you concerning your son's bloodwork". WHAT?! Oh God.... please no more bad news! They revealed to me that Arjay's blood work had come back and he could not get the Umbilical Cord Blood stem cells which we had damn near traveled across the world to get!! WHAT!!!!!Did you know your son was Rh negative, they asked? I replied that I did'nt and they proceeded to explain the rest.
In a nutshell, being Rh- is very rare because most people are Rh+. Majority of the donated cells are taken from Rh+ mothers. Therefore, if Arjay was to have those cells transplanted into his body, it would be rejected, cause his blood to coagulate, which is FATAL. Just as my heart was sinking, they rebounded and said that we had an alternative. Instead of the Cord Blood cells, Arjay would have to receive just the Cord cells. That way there's no blood involved at all.
Great! The problem was, I knew absolutely nothing about these other cells. As God would have it, the Cord cells are actually considered the better of the two because it is in a more pure state! Whew! That was close!
I'll end here and give you a continuation with Part Two tomorrow. Giving account of our experience in China is toooooo long for one blog. So I've decided to do it in sections. I'll try to upload pics also on tomorow's blog.
The trip to China was interesting to say the least! The flight was very long but having my mother accompany me was a blessing. Arjay was a pretty good traveler! He did way better than I had expected! There were two Chinese interpreters to meet us at the airport with the hospital shuttle. They took no time in taking Arjay from me and smothering him with affection. At the hospital, we were pleasantly suprised to see other American families in addition to people from other countries as well. It was a very warm, friendly, loving, and supportive community and we all bonded throughout our stay.
Our room was very spacious equipped with a bathroom, 2 beds, a loveseat, a dvd/plasma screen, refrigerator, microwave, storage units for clothing, a phone, work station, and two night stands. We settled in pretty quickly and wasted no time in rearranging the furniture to give us a more
home-like feeling! There was a fully equipped kitchen for cooking so I went across to the shopping center "The Lotte Mart" and bought some groceries.
Arjay wasn't due to begin treatments until the following Monday, which was 3 days away, so we took that time to get acquanited with our new surroundings. Monday finally rolled around and the doctors began to order some blood work while Arjay began his therapy sessions. The nurses struggled to get blood from him because his veins are very tiny, which is something he got from me..unfortunately! However, after several heart wrenching sticks, they seemingly got enough for testing.
Arjay's first therapy session was LOUD!!! He cried at the top of his lungs and just plainly did not want to cooperate at all. His therapist, Owen, seemed a bit apprehensive to push him as hard. I guess that could also be because I was standing right there. I made it very clear to him that Arjay was there to receive an intervention at it's best so crying or not I expected him to WORK HIM!!! I hated to see him cry but we were on a mission! Around his third day he warmed up to Owen and things got better between them ! LOL
The blood work finally came back and the nurse said "the doctor would like to see you concerning your son's bloodwork". WHAT?! Oh God.... please no more bad news! They revealed to me that Arjay's blood work had come back and he could not get the Umbilical Cord Blood stem cells which we had damn near traveled across the world to get!! WHAT!!!!!Did you know your son was Rh negative, they asked? I replied that I did'nt and they proceeded to explain the rest.
In a nutshell, being Rh- is very rare because most people are Rh+. Majority of the donated cells are taken from Rh+ mothers. Therefore, if Arjay was to have those cells transplanted into his body, it would be rejected, cause his blood to coagulate, which is FATAL. Just as my heart was sinking, they rebounded and said that we had an alternative. Instead of the Cord Blood cells, Arjay would have to receive just the Cord cells. That way there's no blood involved at all.
Great! The problem was, I knew absolutely nothing about these other cells. As God would have it, the Cord cells are actually considered the better of the two because it is in a more pure state! Whew! That was close!
I'll end here and give you a continuation with Part Two tomorrow. Giving account of our experience in China is toooooo long for one blog. So I've decided to do it in sections. I'll try to upload pics also on tomorow's blog.
Tuesday, June 2, 2009
Arjay is China bound!!!!
When you let go and let God....everything starts working out!
As we get things together here for our month long stay in China, we are just filled with gratitude for the love of God! Just for making all this possible and still blessing us with the life of a child....no matter what the condition! Today was Arjay's last EEG before our trip and it's clear he does not like it at all!! :( I hope that he can have less of them, if not none, upon our return. In 8 days we make our trip to China in hopes for a better health condition for Arjay. We just ask everyone to continue to keep us in your prayers because it is already proven that God DOES answer prayers. He's alive and he is on his way to take advantage of a treatment that can improve or totally change his condition!!! So YESSSS!!! God does answer prayers!
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