June 8th, 2006
Hello everyone! Sorry it has been such a long time since we have updated Elijah’s site. Elijah and I have sooooooo enjoyed our time at home!!! The Lord has blessed us with a most wonderful month! EVERYDAY Elijah has told us, “I so happy I know I home!”
Our first couple of days at home were rough, but once Elijah started feeling better, he has continued to get stronger and stronger. He is even running again! He is eating and drinking so well. His counts have been stable! He did not require any blood products!!! No fevers! What a miracle! We only had to go to Pgh. for two clinic appointments. Dr. Cohan has been such a blessing! She is so good with Elijah, and she has been willing to work with Dr. Grupp to care for Elijah when we are home.
The Longaberger Bingo Fundraiser was a tremendous success! We are so grateful for everyone who came to support it! We have been so deeply touched by the generous support we have received! We want to thank the many local businesses and individuals that gave so generously to help make Elijah’s fundraiser a success. Alfred and I continue to stand in awe of the Lord’s faithfulness, goodness and provision for our family. We serve a mighty, able and faithful God! Great is his faithfulness!
Before we go back to CHOP I wanted to share a few (there are soooooo many) testimonies with everyone. In the midst of this I am learning so much. You really can go through a seemingly impossible, life-changing situation and remain “stable” when you have a relationship with the Lord. Please do not misunderstand me. There have been quite a few times when my thoughts have wondered, when I literally felt like I couldn’t breathe because I could not physically deal with the emotions of this. I have cried. A few times I even felt hopeless. But EVERY TIME I would talk to the Lord, cry before him, and sometimes all I could utter was the name of Jesus. Isn’t so good to know that we can be honest with him? He is intimately acquainted with every detail concerning us. He loves us so much that he bore our pain so that he would know, no matter what we faced, how we feel. His word promises this. Sometimes it seems no one can understand, but his word promises that he does. When I have “moments” I tell the Lord, this is how I feel, or this is what it looks like in the natural, but this is what your word says and I am trusting in your word. I thank God for his word! I am learning more and more because of the difficult times I have faced that I must walk by faith and not by sight. He has never, not once failed me—even when prayers were not answered the way I thought would be best.
I think back to when we (IJ) had Elijah. God knows Alfred and I prayed about every aspect of my pregnancy—even about how to deliver. I told the Lord I wanted to try natural, but if he wanted me to have another c-section I would. As soon as we were done praying, the nurse saw Elijah’s head! Alfred, my mom, Alfred’s mom, and I know what that Elijah’s birth and life is a miracle. As soon as the doctor arrived to deliver, my contractions totally stopped. Elijah literally almost did not make it. Dr. Khuzami tried everything to get him out to no avail. Finally, with him pulling and the nurse pushing Elijah out of me, Elijah was born! There is so much more to this story, but he was navy blue with the umbilical wrapped around his neck twice. If he had been born when I was having heavy contractions, he would not have lived. Afterward, I almost did make it. My uterus had ruptured. To make an even longer story short, it took hours for Dr. Khuzami to realize because none of the tests could explain why I was in so much pain. We did not find out till it was almost too late. Only God knew I would need a high-risk pregnancy doctor. I didn’t. Dr. Khuzami gave me the best of care! He came in every time I asked him to. He was even off duty, left a dinner party because I was having complications. He then stayed at the hospital to make sure I was okay. I thank God he did because if he hadn’t, he would not have been there in time to do the emergency surgery that spared my life. I cannot begin to tell you the thoughts that went through my head. Physically, I knew I was dying! There was so much I wanted to say to Alfred! And my children! Only God knows! But the Lord so brought to my mind a story I heard in Bible class many years beforehand about the power of life and death being in the tongue. All I kept saying, barely, was “I’m going to live!”
After my surgery I cannot tell you how many doctors said what a miracle it was that I was alive! It truly was a miracle! I had the best OBGYN in the tri-state area. It just so happened that the head of anesthesiology, Dr. Fritz (also a wonderful man) was on duty for the midnight shift. Is that a God-thing or what! Both told me, more than once, that the Lord must have a plan for our lives because “in the natural” I should not have made it. They told me if I had not had the surgery at the very second I did, I would have died. I wasn’t breathing when they put me under! What an awesome God I serve! There had even been a few minute delay because of communication problems—even the Devil couldn’t stop the Lord from doing this miracle!
Why did I go on and on about what happened three years ago? Because I prayed, and I know God was with me and Elijah. I didn’t have to go through all of that, but God allowed it for his purpose in my life. He was increasing my faith, and taking it to a totally new level. I remember telling my mom, “Mom, I don’t understand all of this, but I know the Lord is going to use this for something that will take even greater faith in the future.” To be honest, I felt a little scared because I couldn’t imagine what it could be! But God knew. He loves me so much that he gave me what I would need to get through this! It has taken me quite a bit of time. Nobody likes trials, adversity or difficult situations. But I am learning to stop fighting them, and to ask God to show me what he is trying to work out in my life. It makes a difference. I hope someone reading this is encouraged. God is faithful.
I am so thankful for my salvation and that I have an intimate relationship with him. I could not do this, not even one day, without him.
Okay, testimonies from Elijah’s first transplant:
1. We had the best room on the unitJ Believe me, when you are going to live somewhere for a month, it is important!
2. Elijah received excellent care! We had the best nurses!
3. For being four hours from home in a where we did not know anyone, the Lord blessed us with visitors! A Mr. Shaffer (originally from Johnstown) faithfully came to visit us every Wednesday. A customer of Alfred’s is his best friend and told him that we would be at CHOP. Mr. Shaffer knows the Lord, and even with his busy schedule as a medical engineer he took the time to visit us! Gretchen (angel Alex’s mom from PGH) paid me a surprise visit when she came to Philly with her friend, whose son, Carter, who also has neuroblastoma, had an appointment. Also, a mom of a little girl, Brinsley ( she also had neuroblastoma), who saw the news story on Elijah ( the family lives in State College) had a scan and appointment with Dr. Grupp. While they were at CHOP she knew we might be there so she came to the transplant unit and saw Elijah’s name on the board! She wanted to encourage me by letting me see how well Brinsley is doing! It really was an encouragement. Do you know that I now have only met three children who are doing well?! The rest have not done so well. I needed that encouragement!
4. Even though the transplant was hard on Elijah, he did not have any major complications! I would hate to have seen what it would have been like with complications.
5. Elijah took his oral meds.!
6. The Lord provided for our every need--even the ones we did not know we had. He has laid it on people’s hearts to give and to do fundraisers for our family. Many of who do not even know us personally. Alfred and I just don’t have the words to express what this has meant to us or how truly grateful we are. We are blown away by the Lord’s faithfulness and provision for our family!
7. Elijah did not have even one admission while we were at home! In fact, he did not even require any blood products! What a miracle!
8. The Lord has blessed me with scripture verses to claim and to hold on to. In fact, on a particularly difficult day Elijah’s godmother called to encourage me with a verse the Lord had given her to share with me. It was a crazy day so I didn’t get a chance to look at it and write it in my journal. That night I could not fall asleep. At 2am I felt so anxious about everything. I got out my Bible and read over the verses. The Lord totally ministered to me, and I was able to peacefully fall asleep!
9. Elijah is responding unusually well to treatment! This is a miracle! With such a low recovery rate, this is an incredible miracle!
I could go on and on!
I also want to share a special story of how the Lord blessed our family in such a special way. After the news special on Fox 8 News about Elijah. I received an e-mail from a woman, Crystal McGinnis. She said how touched she was by the story and let us know she would be praying for us. A few days later I received another e-mail from Crystal. She told me her family wanted to do something to help us. They were going to have a lemonade stand to help raise money to help our family. I cried as I read her e-mail. I just couldn’t believe that they would do that, a sacrifice of their time and resources, to help a little boy they did not know! I want you to read part of the e-mail I received from her after they had the lemonade stand:
Hi. How are you guys? I just wanted to let you know that we had a pretty good day yesterday. Our lemonade stand brought in $177.11. My neighbor, Missy Gross, owns Cliptations, and I guess they were selling candy bars. She gave me her check for $75.00 to add to the money. So our total was $252.11. People were so generous. We had about a dozen people stop throughout the day. An hour before we were to close my husband’s uncle came through with his Harley club from near Detroit. There were about 20 bikes in my front yard! I took a lot of pictures.
I am really glad that I did this. It showed me how truly blessed we are to live in such a loving community.
Add another $76.00 to the total I gave you earlier. The bike club from Detroit emptied the change from their pockets so that we could give you over $300. I love those guys!
The Lord so blessed their efforts! My comfort is that I know the Lord will bless everyone who gave so generously from their hearts. His word promises that “I will bless those that bless you…” (Genesis 12:3). I know some of you reading this have to have tears in your eyes and goose bumps on your arms!
I also want to share another special story in the making. When we were going to businesses for donations for the bingo, one of the stores we stopped at was Circuit City. They were not able to do anything corporately. We didn’t think anything of it. However, a few weeks later we received a phone call from Michelle Lloyd who works there. Here, the employees were so touched by Elijah’s story that they formed a committee to do a fundraiser for him! They will be holding a benefit concert for him. They have already had a couple of bake sales to help cover the costs of having it. Furthermore, Michelle noticed that it was Elijah’s birthday, and they wanted to get him something to help him have something to do during his long trips. Michelle and Jess brought Elijah wonderful, perfect gifts! They gave him a Leap Pad with books including batteries, a Thomas the Train musical book, and Sour Patch Kids! Can you believe it! He enjoyed opening his gifts so much! The Lord is loving us through so many people. I was so happy to finally meet Michelle! She is so faithful in checking up on Elijah for the committee. It means so much to me!
These are only two of many that I could share with you! Alfred and I STILL stand in awe how the Lord is meeting our needs even before we knew we had them!
Alfred and I also want to thank everyone who has sent a donation directly to the Health Care First Credit Union and through Pay Pal to Elijah’s fund. The ladies there have done a tremendous job of keeping track so that we can send you a thank you and let you know how deeply we appreciate your generosity and kindness. However, some have not been recorded. So if you have not received a card in the mail it is because we did not receive your information. Even though we don’t know, the Lord does, and we pray he blesses you in a special way as you have been a special blessing to our family. We just wish we had the words to express how we feel, but there are not words adequate enough to express how our lives have been impacted by the love and support our family has received.
We also wanted to share a couple of verses the Lord has encouraged us with. We pray they are a blessing to you as they have been to us.
Nahum 1:7 “The Lord is good, a stronghold in the day of trouble; and he knows those who trust in him.”
Psalm116:1-2 “I love the Lord because he has heard my voice and my supplications. Because he has inclined his ear to me, therefore I will call upon him as long as I live.”
2 Corinthians 1: 3-4 “Praise be to the God…of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”
Romans 4: 19-21 “Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. Yet he did not waiver through unbelief regarding the promises of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had the power to do what he had promised.”
Job 11: 5 “God does not shield believers from difficult circumstances, but he examines or tests both the righteous and the wicked; for some, God’s tests become a refining fire while for others they become an incinerator for destruction.”
Psalm 34: 17-19 “The righteous cry out, and the Lord hears them; he delivers them from all of their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit. A righteous man may have many troubles, but the Lord delivers him from them all.”
June 9th, 2006
Day 1, 2nd Transplant
We're baaaack!!! Well, we are all moved in! I thank the Lord we have a nice room again. We could have had Elijah's old room, but we decided to stay in adifferent room because I have reception for my cell phone this time. YEAH! Also, we get a glimpse of the outside!!! Even though we are in an enclosed unit in the middle of the hospital, this room's window overlooks a crosswalk on an outside wall. Even though it is from a distance, we will take it!!! I thank the Lord because we are on the side of the unit that we wanted to be on.
Elijah did not want to leave this morning. He knew. He cried and cried. When we got here he said, "I want to go home!" Once we got on the unit after his clinic appointment they had to give him Benedryl to help him fall asleep so that they could remove the two splinters that he got in his left hand yesterday. He slept right through it. We have to put an antibiotic on it for a few days to make sure it does not get infected. Normally not a big deal, but in transplant, if not treated, something like that could become life threatening if it got infected. We were laughing with the two nurse practioners who were removing it. It looked like a major procedure, everyone masked and gloved up to remove a splinter:)
He fell asleep around 3:30pm. It is 8:15pm, and he is still asleep! I pray he sleeps through the night. I am going on five hours of sleep for the past three days, and I just need one good night's sleep to get me back on track:) I just wanted to make sure everything was in order for everyone before we left.
Thank you for keeping Elijah in your prayers! He starts his chemo tonight--3 days then 3 days of total body radiation. Please also pray for Abby. It is so hard for her with us being away from home for such a long time.
June 10th, 2006
Day 2. Elijah did not fall asleelp until 1am last night! needless to say we both slept in:) He had a really good day today! He had a good time in the playroom with dad and pap. He made pictures to decorate his room!
He is being such a big boy! He is taking his "stinky pinky" oral meds like such a trooper! I thank the Lord because at first he saw it and refused! He kept saying, "I can't want to do it":).
He has been so pleasant and lovable today. He has stated more than once that he needed to go home. I think he is being soooo great about having to be back here. "Tap" is staying the night with him so that I can catch up on my sleep. This will work out great considering that Elijah was crying for him at 12:30am last night:).
I got to talk to Abby a few times today, and she sounds like she is having a good time with grandma. She got a pedicure and manicure today. She said she feels so pretty:). That's my girl! All glitz and glam! I miss her so it is a comfort to me when I hear joy in her voice. She misses us so much!
June 11th, 2006
This morning Alfred and I walked in the room and the first thing Elijah said was, "I phrowed up!" Other than that he was is a cheery mood. He gave me such a big hug and kiss! Our new thing is to hug each other cheek to cheek. He has the gooshiest cheeks!!!
Alfred decorated his windows with a dinosaur mural that Elijah is absolutely thrilled with! He is drinking well, but he is not too interested in eating today. Yesterday he ate like a little piggy!
Elijah had a good time in the playroom. It is so funny to see him pulling his pole around so that he doesn't pull out his tubbies. It is a good three times his size:) He was also hopping like a frog. I asked him if I could have some of his energy:) The doctor said he would feel fine during chemo this weekend--we'll take it! Tomorrow starts his radiation 2 x's a day for three days.
Alfred and my dad will be leaving around 6pm today. We will miss them! Elijah and I will hang out and do "our" thing:).
It doesn't look like Elijah will be taking a nap today so hopefully it won't be such a late night:) Lately he has been the Energizer Bunny. Can I say that a good bit of the time he can outlast me:)! That's a good thing:).
June 12th, 2006 Elijah started his total body radiation today. I took the cutest picture of him on our way next door. He was in his wheelchair, mask on, covered in blankets all snuggled. He looked adorable! It will be a while before I can post it because it is on my cell phone. The radiologist took a priceless picture of him before his treatment. Elijah was in no mood for pictures. He put his "dukes" up and he had the most irritated expression on his face. I have to get a t-shirt with it that says "you want a piece of me?"
After his first round of radiation, Elijah was extremely aggitated coming out of anesthesia, but after the second round he was fine. He was throwing up alot, and he kept saying that his tummy hurted him. I'm not sure if it is the mucositis or the anesthesia making him sick.
We basically had a quiet evening, which is fine with me:) Everytime Elijah wakes up he says he needs to go home:) We are working through it:) It will help when Alfred and my dad come back on Thursday.
Elijah is still a champ with his oral meds.. We now refer to it as "cheeky cheeky" time because the nurses squirt the medicine into the inside of his cheeck. It is funny but not when he goes, "No cheeky cheeky time."
June 13th, 2006
Today went much better than yesterday. Elijah handled the anesthesia much better today. No vomitting. He played and played some more:) During his second round of radiation we were passing the time by making purple glove balloons:) The doctor was soooo sweet! He was drawing a smiley face on the one because he thought Elijah would like that. He didn't. Elijah cried, "Stop nurse!":) The doctor was so good about it. We all laughed! He said he heard a pediatric cardiologist say this one time, "It is hard to be cocky when you have a 6 month old peeing on your tie:).
Elijah and I were playing with his disk shooting gun. He was shooting all over the room--I still have two disks to find. I got him in the belly, and he told me, "be nice to people, mommy." I stand reproached. He is too sweet.
Finally at 11pm after being up since 7am, I was begging him to go to sleep. He had more energy than me! Tomorrow is last day of radiation, and he gets his transplant.
June 14th, 2006
Transplant day! Today was also the last day of Elijah's radiation treatments. This morning he was very chatty with the doctors. He told them that his id bracelet said "Ewijah Ketwey":). He also informed them that he needed to go home to ride bulls and horses. He's my little buckaroo:)
The doctor said Elijah is still in the honeymoon phase of transplant #2. We will take it while it lasts. He has been a ball of energy!
He smells like cream corn, but not as bad as last one:) He is such a little champ!
June 15th, 2006
Elijah and I are so happy to have daddy and "tap" with us! Elijah woke up in a good mood this morning. By the afternoon his energy started to decrease. He started complaining that he did not feel good, and he began throwing up. He played with daddy and tap for a while, but he just wasn't feeling so hot. He got some pain medicine and some anti-medics, and he slept from about 6pm to 9:30pm. He woke to throw up some more, and he went back to sleep. So we had a rather quiet evening.
June 16th, 2006
Today Elijah woke up around 10am. The doctors did rounds around 9:30am. He was so funny because he did not open his eyes the entire time they were poking and prodding him. He knew they were there, but he was too tired to acknowledge them. The day before he was talking their ears off! Once they were done, he rolled over to go back to sleep. It was like he was saying, "I've had enough now. Let me get back to my sleep!"
Doctors started him on a PCA because he had been complaining that his mouth and bottom were hurting him. Also his mouth is starting to show signs of mucositis. They said they would rather get ahead of the pain.
He is still drinking so that is a plus. He has not eaten for a couple of days, but that is typical. He has been on TPN since transplant day so he is getting all of the nutrition he needs.
When he was taking his oral meds and doing mouthcare today, he had just finished "cheeky cheeky" when he saw the nurse bring the mouthcare over, and he went, "Oh no, not that again!" God bless him. His gestures and the way he said it was so funny. It is wicked stuff. I tasted both, and there is no way I would want to take them three times a day for a month.
Even though he is getting anti-medics pretty much around the clock, he is still throwing up alot. It just goes with the territory. He truly handles it like a champ. His mouth is not swollen yet. I can still hear his lisp. I absolutely adore it!
He is getting PT right now in the playroom. He just threw up so I need to go!
June 19th, 2006
Hi everyone! It has been a couple of days since I updated. Elijah had a pretty good weekend. Each day he seems to feel a little worse and sleep a lilttle more. He mostly watches his movies and plays Playdoh. He got platelets on Saturday and blood on Sunday. Today his face is a little flushed. Sometimes he feels hot and other times not. Normally his temperature is around 35. something degrees centigrade. Today it has been between 37 and 37.3. It is not considered a "true" fever till it reaches 38.5. A temperature may be brewing.
Elijah has definately been much more cranky. He has been complaining much more that his belly hurts him. He is throwing up alot more mucous. It is sooooo difficult for him to bring it up especially since he is not drinking. He wants to be comforted much more so I know the "honeymoon" period is over. He keeps telling me, "Mommy I want to hold you on "ors" tummy:)" He didn't even want to go to the playroom today. He refused PT.
He has found enjoyment in watching ESPN's Xtreme Bull Riding. It is so funny because he keeps telling us that he needs to go home to ride the bulls and horses:)! We were joking around saying we needed to put a mechanical bull in our back yard:).
The Lord blessed us so much on Father's Day. Mr. and Mrs. Shaffer (Paul and Donna :)) took Alfred and I out to dinner at The Cheesecake Factory. Can I say YUM:)! I don't think they know what a blessing they have been to our family! They have even opened up their home to us. We so enjoyed our time with them. The Lord has loved us through them. I did not know it would do me so much good to get out of the hospital! I felt refreshed!
Then today a mom (Gilly's mom) I met during Elijah's first transplant came up to see us after her daughter's clinic appointment, and she brought us a HOMEMADE dinner that her mom made for us...roast, mashed potatos, gravy, noodles and fruit! We were so pleasantly surprised and completely touched by her thoughfulness and kindness. What is really neat is that the woman who made us dinner knows Charlie's (Elijah's uncle) grandma. They grew up together in Summerhill. It is a small world.
We pray the Lord blesses them in a very special way as they have truly been a very special blessing to ours.
Elijah starts his shots again today. This should be the last time !!! I need to go in to hold him so he will take his oral meds.
The Lord continues to remind us that he loves us and is with us! We are so blessed!
June 20th, 2006
Today has been a rough day for Elijah. He just does not feel well at all. His mucositis is worse than last time, and it is so hard for him to get the mucous up. He dry-heaves a lot. He is still running a low-grade temp, but all of his cultures were negative so that is good news. He slept a good bit on and off. I would rather him sleep so that he doesn't have to feel so yucky.
Alfred and my dad went home today, so we miss them very much. They will be back with us in two weeks. It was such a big help having them here. Elijah really enjoyed his time "tap". My dad made I don't know how many Playdoh animals:)
June 21st, 2006
First day of summer! Elijah woke up not feeling so hot. He spit up alot of mucous throughout the night. He is not swallowing, and he keeps holding a lot of saliva in his mouth. I feel so bad. He is still a little feverish. He laid on my stomach most of the morning. He received platelets again today. He is also having a lot of diareah as well. I have changed quite a few bedsheets today.
We had a surprise visit from Brinsley and her mom today. They brought Elijah a new book. She is here for a MIBG scan. She is three and a half years into remission from neuroblastoma!!! I am soooo thankful her mom saw the news piece on Elijah. It is so nice to meet a family with a positive outcome! She is such a beautiful little girl!
I want to ask you to please pray for Susan Johnson. She lost her only child, Brittany (17) Tuesday, June 13th at 10:12 am here in the PICU at CHOP. They were in transplant at the same time we were. They went home and Brittany got the CMV and BK viruses that children who have been in transplant with low immune systems can be susceptible to. My heart breaks for her. I know this was an incredible shock to their family. Her loss is unimaginable.
Elijah and I are just hanging out watching "Friends of Jerry":). He is such a snuggle bug! When he wants comforted he plays with my ear lobe--it is so funny to me (it's a Nehrig thing:)).
June 24th, 2006
Elijah had a better day today! He did not throw up any mucous. I'm sure this was a welcome reprieve for him. I know it was for me:) He still won't say a word! Can I tell you that he has incredible non-verbal skills:) He is finally spitting the saliva that he stores in his mouth out. He still won't swallow, but at least he is not storing his saliva for hours on end.
His mouth is still pretty bad. He just cries so hard during mouth care, and we have a hard time getting him to swallow his oral meds. He is supposed to take them three times a day, but we have been doing it twice because he just feels so poorly. I have gotten a couple of the cutest pictures of him. He now hides when it comes time to take his meds. It breaks my heart, but he is so funny about it:)
He was more active today. He painted a series of masterpieces:) We also watched bull riding. He even fell asleep watching it tonight. He is so fascinated with it! He truly believes he is a cowboy:)!
He has 2 cells today!!!!! He got platelets today so that should help stop his mouth from bleeding so badly after we do his mouth care.
He slept a good bit of the day, but his body needs the rest. I am glad to see him finally get a good nap in.
June 25th, 2006
Day +11. Elijah has 10 cells!!! Elijah slept in until 11am. He was more active today. He painted, played Playdo, and even went to the playroom. He said a few words, but is still relying on body language to communicate. His feet were hurting him. I rubbed them for him, and he nodded yes when I asked him if they felt better.
He was very, very, very crabby today. He is probably starting to engraft which would explain his behavior. Poor little guy has had it pretty rough this time. I was so thankful that he had slept in because it was a long day:).
Abby made it home safely! I can't wait to see her! It will be almost a month before I get to see her. This is my longest time ever being away from her. She is having a fun summer, and I want her to be able to keep her mind off of Elijah and I being away from home. She wants to visit MeMe and Pap so she won't being coming with Alfred and my dad when they come to visit this coming Saturday.
June 26th, 2006
Elijah slept until about 10am this morning. He looked so sleepy. It took him awhile to truly wake up. He had 50 cells!!! He also has an ANC of 288!!! If it is in the 200's tomorrow then he will not need to take the "pink stuff" anymore! We had no succes getting it into him today. He has had enough!
He was verrrrrry crabby again today. He just does not feel well. He started running a low-grade temp., but it broke--normal during engraftment. He had to have three shots (given at the same time) today:(. He keeps waking up whimpering in his sleep because his legs hurt him so much:(. He also has some radiation burns around his neck that are hurting him. I just put some thermazene that the resident prescribed for it. I hope it helps take away the pain.
It brakes my heart because he has been having bad dreams lately. Please pray the Lord would minister his peace to Elijah. He is the God of all comfort:)
My mom went home today. I miss her!!! I have the best mom in the world!!! She has given up most of last year's and this year's vacation to help me while Elijah has been in the hospital. I am so blessed. The example of faith she has lived has been one of her greatest gifts to me.
Elijah talked a wee bit more today--only when he was determined to get what he wanted:). Hopefully he will start talking more and swalling more tomorrow. He is still spitting out all of his saliva. He should really start to recover this week. It gets a little worse before it gets better. And I believe he has been through the worst of it. I thank the Lord for keeping him safe from all complications!
June 27th, 2006
Day +13. Elijah has 100 cells and an ANC of 900, WOW!!! Elijah woke up at 7am today. He is feeling a bit better. He had a restless night sleep. He slept sitting up half of the night. He would not lay down. It reminds me of the beginning of all this:( He was crabby again today, maybe a little bit less than yestersday. He did say a few more words today, but he is still not swallowing. I have gone through 8 boxes of Kleenex tissues in less than two weeks.
We got our pictures taken by Flashes of Hope today. They take amazing pictures of the children hear at CHOP. The photographer was sooooo patient and kind. I can't wait to see how our pictures turned out! Elijah did not really smile because he was not feeling so hot, but I'm sure the photographer captured something very special.
Elijah fell asleep around 2pm this afternoon, and he is still sleeping. I hope he sleeps through the night, but he still has to get his shot. He has been sleeping a lot more these past few days. Normal for second transplant especially because of the TBI. I took a long nap myself this afternoon:)
I talked to Abby today. She is really enjoying MeMe being at the house. It is sooo wonderful to hear joy in her voice! I am sure she is being spoiled!!! Abby made Alfred a Father's Day cake today:) I am so looking forward to being able to those kind of things with her again:)
I am so grateful for all of the help we have received. It is such a blessing to know that Abby is being well taken care of in my absence. We have received such kindness. Our neighbors have made dinner for Alfred and Abby. And my dear friend Cathy has made dinner for them while I have been gone as well. What a blessing! I'm sure Alfred and Abby are totally enjoying MeMe's cooking! I will really have to get back into the swing of things when I get home and settled:)!
June 28th, 2006
Today Elijah started his day around 8am. He had been sleeping since 2pm the day before. He needed the rest!
He played a good bit more today. He didn't need a nap today after all of the sleep he just had. They started to ween him off of the PCA and a little more on his nutrition. His mouth is getting better, but it is still so swollen. He started talking a wee bit also. It was so good to hear his voice! He sounds funny from his mouth being swollen:)
His ANC is in the 1600's today! He will probably get platelets tomorrow because they were only 20,000 today. His nose is bleeding a little bit, but not badly.
Today for the first time I can see that he is starting to get better.
June 29th, 2006
Day =15! It is hard to believe we have been here for 20 days. I am so thankful for the wonderful nurses here! Speaking of which, we received an e-mail from Elijha's nurse Lauren today. She is visiting her family. She won't be back until the 4th. I don't know if we will be here or not. She was so sweet to Elijah!
Elijah received platetlets today, but his ANC is around 2600! It looks like I won't have to give him his shots when we go home!!! He went to bed at 8pm last night and woke up at 11am today. We both slept in:) The life of luxury:) He was up a lot during the night throwing up. He is still throwing up a good bit, but it is normal because he now has white cells and his body is starting to heal itself. He is still running a low-grade temp on and off, but it still has not spiked.
He started talking more today!!! He gave Alfred an earful when he called:) He sounds so different because his mouth is still swollen. He sounds soooo cute:) I'm just so happy to hear his voice! The doctor went down on his PCA again today, but left the nutrition the same because he is still not drinking.
We went to the playroom this afternoon, and Elijah fell asleep on the couch. I tried to pick him up, but he cried to stay in the playroom. He got up and started playing on the floor, and he started falling asleep sitting up. Again I tried to take him back to our room, but he wanted sit on my lap as I was using the playroom's computer. Again he fell asleep, but this time I had to take him back to his room because he needed to get the platelets. He cried the entire way back to his room. He fell asleep in my arms again so I put him in his bed and he cried in his sleep to go into "his" playroom.
So now he is sleeping, and I am eating dinner as I write this update. He will probably sleep through the night. He needs the rest. He has been so tired.
He has now started referring to his bed as "his room":( I told him it is only his bed and this is our room for a little bit more, but "his room" is at home! Rochelle from Child Life could see that he was a bit down so she gave him a bucket of safari animals that lit up his face when he opened them:)
We are definately looking forward to Alfred and my dad coming to see us. I know this will help Elijah perk up!
June 30th, 2006
Today was a rather quiet day for us. Elijah fell asleep at 5pm yesterday and slept through today as well. The only time he woke up was to throw up, and threw up quite a bit. He also had a good bit of diarhea. He spiked a fever during the night. So he is now on antibiotics. When he did wake up, he looked so ill. He had me worried. He has never slept this much before. I think some of it was part of the "healing process" as well as a bit of withdrawl from being weened from the PCA.
His ANC was 3034! Hopefully tonight will be the last shot he needs to get.
