2000

1999 2000 2001

2000

Week of 1/9/00 - Michael's had a rough week. His medication level in his blood was found to be extremely low, which caused some problems. The problem was discovered after a blood test was run, and his dosage was increased. He seems to be doing much better now that his medication is regulated! He has been sleeping better and doesn't cry as much.
- On Monday, Michael was fitted for a wheelchair. We're all considering this temporary because we believe Michael will walk again!!
- On Friday, I visited Michael. He tried to say "Hi" to me. It sounded like "Hhhhh", but Michael is a fighter -- he isn't going to give up, and neither are the rest of us!
Week of 1/16/00 - On Monday, the family found out that Michael is going to need hip surgery. Both of Michael's hips are 80% out of the sockets. Both hips will be done at the same time, and the surgery is scheduled for February 23. Michael will be in a body cast for 6 weeks. Please continue to pray for my little buddy.
Week of 2/6/00 - Michael has had an increase in seizures again which has been keeping him awake at night. Hopefully the new medicine that he started this week will begin helping him. Michael's hips are also bothering him. I pray that the surgeons are able to do the best they can do so that Michael's pain will go away and, one day, he will walk again. All in all though, I do still see improvements. He is more and more aware every time I see him. He continues to look at people when they talk to him. Now, he even gives kisses and will try to take deep breaths when I ask him to. Michael loves music! He has been responding extremely well to a children's tape called Hi-5 that was sent to him from Australia. He has been attempting to mouth the words. He seems to enjoy it when I sing along to the songs and bounce him to the beat. He has been gaining so much awareness lately! Like I tell his parents, I notice it more because I only see him once a week, and his improvements are very noticeable. He definitely knows what's going on around him!
Week of 2/13/00 - Michael's six hour hip surgery has been moved to Wednesday, March 22, 2000. If there are any cancellations, he will be taken early. Also, a benefit is being planned for that Friday (March 24).
Week of 2/20/00 - Michael came down with bronchitis on Wednesday. He was hospitalized Thursday night through Saturday morning.
Week of 2/27/00 - Michael is over his bronchitis now. His seizure medicine is working. The seizures have gotten shorter & are less frequent. He was very aware this week when I saw him. I tried to take his mind off of the pain by taking him outside for a walk. He seemed to enjoy being outside, and it did take his mind off of the pain for a few minutes. We listened to the birds singing and watched the squirrels running around. It didn't take his mind off of the pain for long, unfortunately. The hip surgery has been moved again to Wednesday, March 29.
Week of 3/5/00 - It was a beautiful week here in Toledo, with record highs.

Monday, Michael came over to my house and we spent sometime outside and went for a walk. He did really well and only cried a little. He loves summer weather & the outdoors.

Wednesday, I went to Michael's house. He was the best I've seen him in a really long time. It got up to 78 degrees, and was a beautiful sunny day. The sun was beginning to set and there was a cool breeze when I took Michael on a walk. He was extremely aware and was looking all around at the birds and cars. He didn't cry at all and really enjoyed it, so I extended our normal walk and went down an extra street. I sat outside with him until the sun set. I went inside and fed him, and later we listened to his Hi-5 music tape. He only cried a couple times during the time I was there, and he paid attention to every noise. He moved his head and looked in the direction of noises. It was a good evening; I saw major improvements.

I saw Michael again on Saturday and he's still doing great! He has great awareness & has been looking around, turning his head, and his seizures are shorter and less frequent.
I went back over the updates page and re-read the whole thing for the first time in a long time. I got to thinking about all of his improvements and there are a lot of things that I've missed because his improvements are so gradual. He has come so far. I'm sure there are many, many things that his family hasn't noticed either since they're with him everyday.

Week of 3/19/00 - Michael hasn't had hyperbaric treatments for several months, but good news - He starts treatments again this Wednesday! These treatments really do work for him, so I'm so happy that he's finally been approved for more. This Friday is the benefit!
- Michael is more aware than ever. On top of looking & turning his head when you talk to him, he can more easily play with his switch toys now. When asked where they toy was, Michael moved his hands down toward it. When he's tired of playing, he'll pretend to sleep, and then will "wake up" as soon as the toy is put away!
Week of 3/26/00 - Michael had his hip surgery on Wednesday. I wrote so much I had to make a new page. God bless you all for your prayers.
Week of 4/9/00 - Michael was readmitted for a couple days and was put back on Valium.
Week of 4/16/00 - The Valium helped for awhile, but he began crying again.
- I visited on Thursday. He was very calm and seemed to enjoy it when I read to him. He also got a couple new music tapes in the mail. It was so fun singing to him. He really seemed to enjoy it. He was more aware than I'd seen him. He tracked very well with his eyes and looked at me whenever I talked to him. I moved his arm and put his thumb in his mouth, explaining each movement. I then took his thumb out and let him try. After several attempts he got his thumb in and seemed very proud of himself. He sucked happily. :o) He is done with hyperbaric for now.
Week of 4/23/00 - I saw Michael on Thursday & Friday this week. :o) He cried a bit more than last week, unfortunately. I hate to see him so upset.
- Thursday, it was warm enough that we could go for a wagon ride, which he seemed to really enjoy. He only cried a couple times, and that was mainly when a car went past. He looked all around, listening to the birds chirping, dogs barking, kids playing... We went back inside and danced & sang to a Chipmunks sing-a-long. We then did a little reading & sang to a couple of his tapes.
- Friday morning, Michael was just waking up when I got there. I crept into his room and his eyes were open so I went in. We listened to a Children's Playtime CD which he must really love because he began babbling (the first time that I've heard any babbling in many months). That was so exciting! It sounded like he was trying to say "ma, ma" and also "hi". I laid next to him and rocked him back and forth to the beat while singing to him. I really enjoy singing to him...he really seems to like it. When we were done listening to the tape, I gave him his medication & put a shirt on over his cast and wrapped him in a blanket. It was probably about 60 outside, but there was a light breeze. Unfortunately by this time Michael was crying a lot so we didn't get many stories read outside. All in all it was a pretty good couple days! I'm really excited about the babbling. We'll have to listen to that CD more often. :o)
Week of 5/7/00 -
- Monday: I got to baby-sit for a couple hours. Storm clouds were moving in (but the storm never came). That gave us a nice breeze on the warm evening. We went outside & sang a little and I walk around with him showing him the yard. He wasn't too happy when I took him back in, so after about 20 minutes, I took him back outside. He was happy :o) I fell back onto the slide with him and we laid there for probably a half hour watching the clouds, feeling the nice breeze and singing & talking. :o) It was a nice day.
- Wednesday: Michael came over to my house on Wednesday! We had a great time reading stories & going on walks. My buddy loves the outdoors, that's for sure :o)
- Saturday: We went to a healing service. When we went back to the house, we celebrated Michael's birthday. I think he really likes the switch-toy Fire Truck I got him :o) I can't wait to try it with him. His 3 aunts, cousins, & grandma were all there from Indiana. We did our usual singing to tapes in the bed room where it was quiet. We didn't really have a whole lot of time to do much else. There were a lot of people in the house :o) One thing I really found encouraging was when I grabbed his thumb and asked him if he wanted to suck it, he began sucking with his mouth! Also, he followed my finger pretty consistently with his eyes. He's a bright little boy. He fell asleep before I left...it was a long day for him.
Week of 6/4/00 -
- Tuesday: Michael was admitted to the Cleveland Clinic today. The dilantin level rose to a toxic level. This has caused his liver to function at a lower level. I know God will bring him home quickly & safely, but it hurts to think all he's gone through.
- Thursday: Thank God Michael is improving! He is due home from the hospital this evening. As soon as his liver is ready, he can start the Ketogenic Diet! Thank you everyone for the prayers! God bless.
Week of 6/11/00 -
- Wednesday: His face seemed more full of movement. He seemed to use his muscles in the face more. Not really for facial expressions like smiling, but he did make some goofy faces at me a couple times :o) I did see some big changes there. Also, when he cried, he cried real tears, which is new. Its not a screaming cry AS MUCH...its more "normal"...but not quite. His seizures are nowhere near as bad. They aren't QUITE as jumpy, more of a smooth movement if that makes sense. Many times he had a seizure without crying afterwards. Over the weekend I heard he made a clicking sound, got his aunts attention, waited till she looked at him, did it again and smiled! A bunch of milestones.
Week of 7/2/00-
- Saturday: We went outside to read a book on the swing. Well, as you may remember from last week, he likes to move. He didn't' really enjoy the book a whole lot, so I picked him up & we walked around the yard for a while looking at stuff. We laid on the slide & watched the birds & a helicopter fly over. Rod came outside & said they were leaving to go to the store & a friends house for a few minutes, they took Megan along, so it was just me & Michael.
  I thought it would be nice to go on a walk, so (those of you who have seen me with him know I don't ever put him down LOL) I picked him up & carried him around the block. He loved it bunches, and, of course, so did I. We walked up & down 3 streets & were gone probably 45 minutes to an hour. I like to point things out to Michael & let him look around, and he seems to enjoy that A LOT.
  When we returned, it was dusk. We went into the back yard again & walked around and looked at stuff. I explained to him that I was going to go to Pennsylvania in a week & learn how to help him, and he'll be able to walk & talk again someday, not to give up. I know he understands just by the look he gives me.
  We walked over to the sandbox where his favorite truck still is. (He'll be able to ride it again someday.) I stuck his feet in the sand, and he gave me the cutest look. He just loved it. We'll have to do that more often :o) By this time the mosquitoes were out, so we went inside. I washed his feet off, then we sang a few songs.
  I laid Michael on his stomach on my lap and he pushed himself up! He's done this before a couple times. I told him that is great! And with determination like that he'll be walking! I asked him to try again and he tried harder, pushing himself up with his arms almost completely extended. He continued trying & I continued telling him "great job." What a cool kid. He finally got out of breath so I rolled him over on his back and gave him a hug. Gotta love him :o)
Week of 7/9/00-
- Tuesday: I swear every time I see Michael I have more & more fun. Today Michael, nurse Karen, and I went to the Toledo Zoo! We arrived at about 4.
  Karen is the best nurse in the world, and I'm not just saying that.
  The first place we stopped was the small primates area. Michael looked at all the monkeys swinging around and just was so interested in it. He followed them with his eyes very carefully. We stayed there quite awhile because he just loved it.
  We then walked onto the BIG monkeys -- the orangutans, gorillas, and apes. On the way we stopped at the train crossing and watched the zoo's train go past. Most of the big monkeys were facing the other way, but then one decided to get up & put on a show! He started swinging from rope to rope right past our window. Michael watched it carefully as it flew past! It was too cool.
  Onto the Aquarium house. We saw tons of fish & underwater creatures!!!!!! From Piranhas, to eels, sharks, turtles, jellyfish, urchins, etc. Michael watched them all so carefully. You know how kids just love to see all this cool stuff :o) He was very impressed, too, with the giant blue bubble lights in the aquarium house. He could have watched those bubbles rise up to the top forever!!! Unfortunately, we didn't realize the zoo closed at 6 until the guy on the loud speaker said "Go to the exits". But that's ok, Michael was getting tired. He had a long day! We have lots more to see, so hopefully the 3 of us can return AT LEAST once more this summer.
Week of 8/6/00-
- Friday: We went back to the zoo today! You can read about our Toledo Zoo trips here. After the zoo, we headed back to his house & Karen did her checkup on him, gave him a bath & all that. She then showed me something really exciting! She tickled Michael's foot & he moved his leg!!!! That's a very good sign :o)
  I stayed after Karen left & read to Michael. We then listened, danced, and sang to his Hi-5 tape! hehe So much fun.
  Thank you all again for your thoughts & prayers for Michael and for his family!!! Its everyone's prayers that help him!!!!
Week of 9/3/00 -
- Monday: Michael's hips where found to be coming back out again. He needs surgery, and that is scheduled for the 20th of September. I hate to think of him going through that again. Please keep him in your prayers!
- Wednesday: Michael broke both his fibula & tibia (lower leg), and he is now in a cast. This has not been a good week. Let's pray he heals fast and the pain is minimal! Thank you everyone, for your thoughts and prayers.
Week of 9/17/00 -
- Wednesday: Michael's hip surgery was cancelled. They'll try to install a Baclofen Pump to see if that helps him, and then the surgery will take place later.
Week of 10/1/00 -
- Sunday: Michael's arm swelled up and turned black and blue.
- Tuesday: Michael went in to the hospital for a consultation about the pump and Fundo. The ph probe and upper GI will take place either Friday or Monday. They are going to do surgery for the pump and the Fundo at St.. V.'s next Friday. His arm was x-rayed today, and, luckily, it's not broken!
Week of 11/29/00 -
- Wednesday: Michael's surgery was at 7:30 am at Toledo. It lasted about 4 hours and they rotated his hip. Unfortunately, since his bone was so weak, they could not use it any longer. It had to be replaced with a cadaver bone. Thank God he didn't loose nearly as much blood as last time and no transfusion was needed. He should come home next week.
- Thursday: I was so happy to see my buddy in the hospital today, and he looked really well considering what he's been through. His nurse, Karen stopped in for a few minutes. She brought his a cute 3-D Tweety balloon. Her & I prayed for him before she left.
  For the pain, he was on valium and morphine, so he slept for most of the 2 hours I was there. His Baclofen pump was also very good at relaxing him and I think this was a major reason he was sleeping so well, since last time he was very uncomfortable even with the morphine & valium. I stood over his bed the whole time & talked with him. I know he was out of it, but he seemed to recognize my voice & know I was there anyway. That was a good feeling! :o) It was hard to see him this way, but seeing that he was doing much better than last time was comforting. The worst thing to see though was that occasionally he would get nauseous and would try to throw up, gagging himself. Because of the Fundo, he couldn't throw up though. This is good in that he doesn't burn his throat, but he was scared & very uncomfortable. The nurse & I calmed him down each time. I gave him a big ol'kiss and told him it would be all right. I propped him up with pillows, and he fell right back to sleep. That was a good way to leave him. I hate to leave him when he's upset.
  Anyway, all in all, he really looked good. The pump really had him relaxed & his arms were very loose. He had good color in his face & he slept very calmly for the most part.
  I'll try to get out & see him tomorrow also.
- Friday: I saw my sweet little buddy again. They moved him onto the floor already! He's out of PICU! I was so glad to see that!!!! He's doing really well. I got there about 4. My sister came along because she just loves Michael too. (Who wouldn't?)
  He was sleeping when we went in -- looked so peaceful. The color in his face was perfect. Looks great! He woke soon after we went in. I held his hand and just sat there talking softly to him for a while. He went back to sleep. We turned off the light above his bed and turned on 2 across the room so he'd sleep better. He only gagged once today in the 4 hours we sat there with him. When this happened, I rolled him on his side a little and gave him a little hug till he fell back asleep on my arm, so peacefully :o)
  He slept for a pretty long time. Dr. Lindell came in and was very happy with Michael's progress. Said his blood counts are a little lower today, but that's to be expected.
  My sister & I talked to Michael some more for a while when he woke up again. He made such good eye contact today!!! Doing so well.
  When we had to go, I gave him another big ol'kiss. We waited till he fell off to sleep again and then tiptoed out :)
  I'm just so proud of him. He's doing so well. Its a relief to see him getting better so quick, since last time was so rough. I can't wait to see him again. That pump is amazing, too.
  Thanks again for the prayers everyone.
- Saturday: Michael went home already!
Week of 12/10/2000
- Friday -- Just got home from seeing my buddy. His Mom & dad went to a Christmas party, so I got to watch him & Megan. I took over two shoeboxes full of cards he'd received over the time when I hadn't seen him and read them all to him. He is SO AWARE! Even more so than before. He'll look right up at the card and check it out. I told him about every picture and ever drawing and every postcard. He really seemed to enjoy all that.
  His muscles are very loose! He is beginning to gain some control of his arms. I was able to exercise his arms. (His legs are still in the cast.)
  He seems to have some more control over his face also. Its was so cute. He gave me a "Say what?" look. He slanted one eyebrow down and made a goofy face. This was definitely a purposeful look -- no seizure or anything. He smiled once, during a seizure which is normal, but I didn't notice any smiles other than that. He continues to try really hard to make sounds. I encouraged him to make sounds and try to talk to me. I asked him to answer and said I'm listening. He would move his lips and try really hard. I heard heavy breathing, which I think was him trying to make sounds. He'll get there someday. :o) I know he will.
  My sister (Kristin) stopped past with a friend, and they both remarked how aware Michael is. Kristin's friend got Michael to smile and really react to her. She was very good with him. He follows and watches things so well. He has definitely improved a lot since September.
  Well, he started to get tired around 11:30, so I turned out the lights in his room, except for his stop light which he enjoys to look at. I talked to him for a while about how God's helping him and will continue to help him. I told him to trust God ... it'll happen. TO keep fighting and trying because it will happen. Maybe not tomorrow, but soon and he seemed to understand. Then, I prayed with him & sang as much of the Hi-5 song "Dream On" as I could remember, which wasn't much LOL. He feel asleep in my arms about 12:15. What a night. I truly enjoyed it. It was extremely encouraging to see him this way. No where near as stiff and so no where near as much pain. I don't want to make him sound better than he is -- he's doing extremely well, but has a while to go. He WILL Make it though. I really do believe that. Stimulation & God'll get him there!
  We're planning on next Thursday for Children's Wonderland. We took Michael last year and that had been the first time I REALLY saw him look around and watch things for long periods of time. Now, a year later, I can't wait to see how he responds to the lights, music and animated figures. [Unfortunately we didn't make it there. We'll go next year!]

1999 2000 2001

The Elmo background is from Meggie's "Elmo's Playground"