Mar 2005 | Apr 2005 | Jun 2005
We are so blessed. He gets a lot of great cards, little gifts, prayers and calls from our friends, community, people we don't know, etc. Thank you to everyone who has helped us get this far. This websight is great and we check the messages from our friends/family often - thanks for signing our guest book.
May 3, 2005
CHARLIE'S 7th Birthday!!! Grandma and PaPa Meadows came today to watch him so I could work and we also had a party for Charlie. We later went to CHuck-e-Cheese and he even walked into Toys R Us to get a new Gameboy Game. This is the longest he has been on his feet for 4 months! It was a great day and the best gift of all is that God helping us and he's getting better.
May 4, 2005
This was a bad day. I am wondering if we didn't over-do it yesterday for the birthday. He had a severe migraine. He vomited and hurt all day long. He made it to the Dr. Appt., but had to keep a blanket over his head and use a wheelchair to get around. The doctor saw him quickly and we went back home. A VERY LONG and MISERABLE DAY! I hope we don't have one of these again.
May 5, 2005
He is weak, but feeling a little better today. No Migraine at least.
May 6, 2005
Charlie is having his first birthday sleepover tonight. Zachary and Tyler are spending the night. We had a fire and cooked hotdogs and smores outdoors. We played games and watched a movie. They were so happy. This is probably the happiest I have seen Charlie in 4 months!!! That is so wonderful to see.
May 9, 2005
SALLY's 4th Birthday!!! THe kids have close birthdays. We had a party with her today and tried to spend extra time just on her. This is something I haven't talked about in my diary but is very important. As a sibling, she has stuggled a great deal watching Charlie get IV treatments, be carried, crying in pain, etc. It has been very hard for her and as a 3 year old, I don't think she could understand what was happening. She has become very sensitive and clingy to me. I try to spend extra 1-1 time, but with Charlie's new demands, it can be very difficult. She acts out more with behaviors, negativity and often thinks we are being mean if we don't pay attention to her every minute. Now that Charlie is getting more independent again, I think she is starting to do a little better with the situation. Today was all about Sally, so she was very happy! That was so nice to see too!!!
May 13, 2005
IV treatments of Solumedrol and Methotrexate given (2 hours total). He tolerated these farily well, although does have some nausea during the treatment. Nurse L is still with us - our little home health nurse/ANGEL!
May 15, 2005
Charlie's IV treatments will now be every Friday only. His blood sugar levels were elevated on his labs because of his medication, so she wanted to drop back on some of the IV's to see if he could tolerate that. We are happy about that. He will also still need IVIG as necessary too, but this is such a milestone for us. I hope he continues to be okay with the reduction. It will definately help with finances.
May 20, 2005
IV treatments. Solumedrol and Methotrexate (2 hours total). He did okay!
May 23, 2005
Charlie appears to have a trent of morning sickness/nausea. Usually needs to eat something bland like a bagel, toast or crackers first thing. Normally, then by 10 a.m. he is feeling better. His range of motion (ROM) is getting better each week. Thank you God!
May 25, 2005
Brian, Sally and I went with Charlie to Chicago today to see Dr. Pachman. He felt that Sally was ready to see Children's Hospital now and maybe she'd understand what we've been doing there better. Charlie lifted his head for the first time today off of the exam table. Its been four months since he could do this. He can also get down on the floor now and get back up by himself. The improvement is remarkable. The port would not return blood although, so we had to poke him and do his lab work out of his hand. The technician was wonderful and got his labs quickly and painlessly. PT/OT evaluations indicated that he was ready for some therapy finally. We are referred to OSF Children's hospital for an evaluation. We met a family from Louisville, Ky who have never met anyone else with the disease like their daughter has. They drive 5 hours to get to Dr. Pachman. It's nice to network with other mothers/families dealing with this terrible thing and we email each other for support. CureJM.com is also an awesome website too. Charlie's treatments will remain the same for the next 6 weeks. She did reduce his daily oral dose of Prednisone to 17.5 (from 20 mg). This was an excellent day. We felt blessed walking out of Children's Memorial today. Its all very surreal - really!
May 31, 2005
OSF Children's hospital today. We had a PT evaluation. We were there for about 1 1/2 hours. They will begin therapy at Easter Seals for warm water aqua therapy. Charlie is excited about this. The pool will make it more fun. I will join him and learn the program also, so I can take him alone. This helps financially and is more practical for our hectic schedule. He will also continue to wear his ankle support braces at night too.