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Friday, December 29, 2006 9:17 AM CST

Good Morning and

Beleive it or not I actually put new pics up right away. The one on the front was taken at Sugar Lake last Saturday when they had an open house for the families of the kids.

Seems to be the only time we get a photo of all of us together. I was thinking we should go some where and have a family photo taken cuz it's been a long long time.

Well we had a pretty good Christmas. Spencer didn't get anything he wanted LOL. Ok, the guitar was great but the rest I got him was either something he already had or like this book I got him was the 3 volume of a series and I didn't realize it. I told him I was just rushed for buying gifts this Christmas, it came up so fast.

Max of course got lots of light thing that flash or spin ( I think that's why he's yawning when Spencer was opening gifts for him LOL. Oh no not more lights MOM!!!). He did get cowboy boots so I'm hoping he still will be riding after the new year. I plan on calling Shari after New Years to see what's going on for sure.

We put his boots on him and when we told him to look down at his feet to see his new boots he looked right at them.

Then we had Christmas here at our house with Jim's family. Of course that was a blast as always. I just love his family. We have just way to much fun

Max did really well at Christmas with everyone here and didn't have that many seizures. He joined in on our dice game and both Max and I won one item. It seems that Max would get doubles on the dice if I at least placed his hands in the pan or touched it some where LOL.

I found out yesterday that Max's shoulder is fine and it's not pulled out or anything. So I guess that's good. We just have to work on it more. I think with his spine curved towards that shoulder that is what's pushing his shoulder forward. Makse sense to us anyways LOL

Oh, Spencer really wanted that Nintendo Wii for Christmas but we just couldn't get one. Well, yesterday we were at Target for a swim trunks for Spencer for a b-day party at a hotel he was going to and at the dressing room when Spencer was going to try on some jeans and the swim shorts, I heard the Target clerk answer the phone.

The person asked something and I heard the guys say WE SURE DO!!! And then there was a pause and the guys said well you better be less then a minute cuz they could be gone.

I asked what that person had asked about and if it was the Wii. He said it was and that they do have them in.

Spencer and I looked at each other and we both just ran to the electronics area. I pushing the cart like a mad women and Spencer trying to run with clothes in his hand plus he said his own pants were falling off his butt and he was dropping the clothes he was carrying.

They only had 2 left so we did get one finally for him.

No sooner did we walk by that the other one was gone so I wonder if the person that called got there in time to get that one or not.

So now Christmas is complete LOL

Oh look it's snowing. I kinda want snow but not. Seems almost to late for it now LOL. Bring on Spring weather.

Well, It's getting late and it's friday.... check book and bill time and I wanted to get out and see Max again. Oh, and Spencer is having a friend over...almost forgot.

So, I hope everyone has a happy new year,
Lisa

Tuesday, December 19, 2006 7:23 AM CST

LET THE STRESS BEGIN!!!!LOL

I am soooo not ready for Christmas. Just to much going on besides Christmas and to much mental stress going on.

Just some of what's going on that I can say is Max had his appts and the one with his bone Dr. wasn't so good.

Max's spine curve has gotten worse. It went from a 40 degree curve to a 47 degree at the top and the bottom went from like 31 to 35 or something like that.

So, add that to my guilt for not making Sugar Lake staff put Max's TLSO on more often. I did tell them at one time to have him wear it more but didn't follow through and now Max is paying the price for it.

With this appt and his Baclofen appt, we talked about his right shoulder coming forward, which has been like that for a few years and I assume due to his spine curving that way pushing his shoulder forward, they did an xray of it and couldn't really tell if it was coming out of it's shocket or whatever the shoulder has up there.

So yesterday we had a CT (catscan) done on it and haven't heard yet as to what it showed. We'll hear in a day or two they said.

If it is out, then we have to see a different Dr. for this part of his body. Finding out there isn't just one Dr. for all your bones. There's a Dr. for every part of your body apparently. So many Dr.s and so little time LOL.

We had his baclofen pump refill and I left that alone being it's so close to Christmas and didn't want anything to go wrong with Max if a lower dose didn't sit well with him.

We saw his pump surgeon to talk about replacing the old one and having a new one put in being it'll be 7 years come next Christmas (can you believe it, 7 years already coming up)

They have 2 different kinds of pumps now. One that holds more and one a little less that's smaller in size. Doesn't matter at this time which we put in being we'd still have to have him refilled every 3-4 months cuz of the dose he's getting right now. I would like the smaller one though so it doesn't stick out so much on his stomach.

Max has been sleeping alot during these appts. so I guess that's not so bad. I would too LOL.

We decided to just have him come home on Christmas day instead of having him spend the night on Christmas eve. He just doesn't sleep well at home it seems being we don't have him spend the night at other times and then I don't sleep well which makes me crabby the next day and then I go into " I do everything around here" craze.

Well, I should get going. This is my day to stay home and figure out what left I have to get for people and now that I go through those coming for Christmas, I see I have quite a few more things to get.....dang.

Grandma Karen seems to be holding up well since Jerry's passing on. It's that busy time of year with Christmas gatherings so that's been keeping her busy and out and about which is a good thing at this time I think.

HAPPY BIRTHDAY TO JIM!!!! He's passed the 40 mark now and moving on closer to the 50 LOL. I shouldn't laugh cuz I'll get there before him.

LOVE YOU JIM!!!! Hope your day is better then when you woke up this morning. I had a talk with Ratchet (our cat) about bugging you when your sleeping and he agreed to leave your feet alone LOL.

I hope every one has a Merry Christmas. I won't update now til after then.

Lisa, Jim, Spencer, Maxwell

Tuesday, December 12, 2006 8:03 AM CST

Morning,

Can you believe Christmas is almost here? I still have so much to do. I haven't even taken any Christmas pictures of the boys yet.

I didn't have a van all last week so I missed seeing Max very much. I saw him yesterday and didn't do much but kiss and hug him. Of course he gave me the grouchy face when doing all this kissing and hugging.

He's has his bone dr. appt today. Then he has a pump refill on Friday and I think I'll just leave the dose as is being it's winter and you never know when the big one will hit or the cold weather will come back.

The on Monday he has an appt with his pump surgeon. Max will be needed a new one after 6-7 years. The new one is smaller in size and they are ok'd by the FDA that the baclofen lasts longer in the pumps so we won't have to have it refilled for 6 months instead of the 3 months.

So, it looks as though his appts will be every 6 months with 3 of his Dr. and of course the dentist too. And always around Christmas time when I need to get other stuff done too LOL.

And they seem to be all at the same time within a week of each other LOL.

His Dentist is actually next month and then his neuro is in Feb.

I'll let ya know how his appts go next week. I have tons of Christmas shopping to do still also.

OH did I tell ya Spencer made the B honor roll this semester? But now he's expecting that out of himself and if he misses or doesn't do well on any test he gets bummed out. He's already starting to add stress to himself in his young year of life.

Well, I better get going here. Time flies when your on this dang computer which I don't have much of when I HAVE to be some where.

Stay cool in this warm weather we're having LOL Lets cross our fingers that it stays (for those of you who aren't winter people such as me)

Lisa

Monday, December 4, 2006 7:42 AM CST

Good Morning,

We have spent the last 5 days saying our goodbye (for now) to Dad (Grandpa Jerry).

We spent the last 5 days with family and friends talking about how Jerry now doesn't have to live any physical pain or worry about what will come next. BUT, he is now continuing on with laughter, smiles and good times. He's with many family and friends of past now.

We also don't have to worry about Jerry and any pain or suffering he may have had to endure will still here with us but we do have to deal with the pain of him not being here with us anymore.

He's left us we lots of wonderful memories and good times. And we have to continue making these wonderful times with our family and friends cuz Jerry would want that.

Jerry has made me realize these last few years how important family is and I have been so fortunate and blessed to be a part of this family. I also wanted to say how Jerry has really made me feel like his own daughter. My father passed away a couple years after Jim and I got married and he never saw our kids. Jerry filled that hole in my heart and gave my children lots of wonderful memories.

The last couple days we have seen so many family and friends that we haven't seen in awhile.

Two of Jim's Supervisors came to Jerry's Reviewal and his principal (and wife) also came to see us. I can't tell you enough how much that means to Jim. Once again Jim's school dist. has shown us that he couldn't have a better company to work for. You at his school have always been there for him (us) when we need you and show us just how much Jim means to you. We thank you so very much for your support.

EZRA GOT TO COME HOME FROM KOREA TO BE WITH HIS FAMILY!!!!! How exciting is that. We didn't think he would be able to come much less make it in time. But he did and got to see Grandpa Jerry one last time before Jerry was taken to the cemetary.

After talking to Ez some about life in Korea and how he is doing, he's doing GREAT and is moving up in rank much faster the most would in the short time he's been in the service.

We are all so proud of him and his accomplishment in the service.

His daughter, Gracie and Mom, Amber made it too to the funeral (they live in North Dakato where Amber's parents are).

Jerry's funeral service was very, very good. The songs all fit perfect, the sermon was heartfelt. Nothing was as they say sugar coated, it was all about Jerry's rough times and the wonderful outcome in the end and how Jerry finally had made a life for himself that he could be very proud of.

We brought Max to the reviewal and he did very well. He had to hold his head up cuz he wanted to look at all the people and when they talked with him he would look right at them.

He had a few of his laughing, smiling seizures but those who saw them thought they were wonderful to see him smile.

Well, Like I said, now we have to go through the grieving part of missing Jerry through many different seasons and remember with each passing one the good times that Jerry made with these seasons. (This sounds familiar, the sermon also talked about the different seasons of our life. It was really good)

I better get going and hope this goes through cuz I seem to remember if I spend to much time on here it doesn't want to go through. I'll update again with more that I probably forgot that I wanted to say.

Thank you all for your love and support. Oh, we also used that poem that someone wrote Re: Jerry's name and put it on one of the post board pictures that we made. It was Jerry.
Thank you for that.

Lisa, Jim, Spencer, Maxwell

Thursday, November 30, 2006 11:11 AM CST

Good morning,

I'm going to make this update real short for now and will update more next week when I have time.

I just wanted to write to let people know that Max's grandpa Jerry passed away on Tuesday evening.

Though I have been updating saying how mentally well he has been after all he's been through aparently his body was saying something else.

It was very quick with no signs of him being ready to go home to the Lord.

Like I had posted the other day, when we saw Jerry on Saturday his spirits were up and he was excited to get a prostesis and to move on with his life and get back home. His fingers were healing well and he was feeling really good.

I got a call from Karen on Tuesday evening with the news of Jerry's failing health and when Jim, Spencer and I got to the nursing home he had already passed away.

There were a few things I had wished I had told Jerry about how I felt about him being my dad all these years and how blessed I was to have him in my life.

My dad had passed away a couple years after Jim and I were married so I didn't get to share with him the joys of my married life and my children. I didn't get to share the ups and downs that come with it all too.

But Jerry was there for all that and he was a wonderful father in law and a super cool grandfather to my kids.

He is going to be missed very, very much in our lives now.

I would like to ask that you keep Karen in your thoughts and prayers and Jerry's children and grandchildren.

I will update again next week to reflex on all the good times that we've had with Karen and Jerry and we will continue these good times with Karen and in memory of Jerry.

Thank you for keeping the family in prayer,
Lisa, Jim, Spencer, Maxwell

Tuesday, November 28, 2006 8:07 AM CST

Good Morning,

I was surprised to wake up to 45 degrees weather and I thought I had heard BIG rain drops last night but didn't think it could be so. I dread the cold weather coming cuz I think things will freeze up pretty good. Glad I have no place we have to be at such as appts this week.

I hope every one had a nice and relaxing Thanksgiving. We had a nice quit time at home here with Max. I actually have some new pics to share with you this time round.

I guess I don't really have anything to say other then that. Max laid low that day, talked with us some. Our stray black cat that showed up at our house loves Max. He's the only cat that will lay with Max. This cat actually will lay any where you place him. He's really a cool cat (ok, no pun intended there) And his name is Black Cat cuz that's what we just started calling him.

Max ate really well for me too. I noticed some chewing movement in his mouth that he did.

I didn't play with Max though to really get any response from him cuz I was busy cooking and I had one job I had to run to and clean.

Spencer is doing very well in school. He has all A's and B's. So, we plan on getting him this Nintendo WII game system for Christmas he wants.

Well, this is going to be no easy task. Spencer and I got up at 5am on Black Friday in hopes of getting it. We got to Plymouth and there was a line at this store (of course) but found out that this place only had 5 of this sysytem in the store and we were number 9 in line.

We waited in hopes that maybe it wasn't true or some ones credit card wouldn't go through LOL. Ok, not a nice thought but ........

So we didn't get on cuz they did only have 5 and I told Spencer seeing we are here he miswell get a video game. He said he didn't really want anything and I said "DANG IT (not exact words I used LOL), WE GOT UP THIS EARLY AND I'M NOT WALKING OUT OF HERE WITH NOTHING".

Spencer has never heard me DEMAND HIM to buy a video game in his life. LOL.

But the stories I heard when standing in line and those ahead of us being there from 5 in the afternoon the day before to 1:30 am. And the lines at other stores. We would have never gotten up in time to get one. Now I know why I don't shop on this day but did have fun hearing peoples stories.

Grandpa Jerry is doing well. He's in a nursing home here in Buffalo and his fingers are healing well and his leg that was taken off doesn't seem as bad as I was thinking. It's just little ways below the knee so the prostesis he's going to get doesn't seem so bad or maybe won't be so hard for him to get used to walking on.

So, in time he plans on getting home and I'll keep that in my prayers for him cuz I know it must be hard to be away from home. The nursing home is pretty nice though and he has a good roommate at this time.

Well, I should work on the pictures otherwise it could be awhile before I do that. Some may be blurry cuz of my moving and you may notice my hair color is different. Just ignore that. I'll be back to the norm in a few weeks. Just have to wait til I can change it back. I guess I should fool with mother nature so drastically LOL.

Lisa

Monday, November 20, 2006 10:03 AM CST

Hello,

Thought I'd do a quick update being it's a holiday week and I think I"m going to be busier then I have been lately.

I have some extra jobs to clean this week and also switching my jobs around to try and spend time with the family and Max cuz they all have a four day weekend and I have my usual job for the most part. And it just crossed my mind that I have to get the Christmas stuff out and ready to put up. UHGGGG!!!

Max was kinda icky again last Friday and I thought maybe I needed to take him in to the Dr. again but they said he seems much better so lets hope he stays fine through the holiday week now.

I was out there on Friday and he was sleepy but perked up when I was talking to the nurses about my father in law (which I'll get to in a minute here).

Then Max was awake so I talked with him and he talked back but was getting his water so I couldn't hold him. I can barely hold him anyways he's getting so big.

I forgot to tell you when we were out a couple Sat. ago with Max he was so funny when I was in the back with him and talking to him. He did the ol eye rolling to the right and wouldn't acknowledge me much until I asked him if I'm bugging him and then he looked right at me. Guess he just wanted to enjoy the ride without me in his face. LOL

He got a good school report a few weeks ago. I just got the notes in the mail not to long ago and Max responded to almost all they did with him (verbally and with looking) I think he squeezed his ball some too. I can't find the notes now of course to tell you more in detail about it but it was good and Max only had like 2 seizures during school time.

I was saying how Max perked up when I was talking about Jerry, his grandpa, I think I had mentioned to you about his fingers being taken off due to poor circulation and has only a thumb on his right hand.

Well, a couple weeks ago he had to have his leg taken off from the knee down for the same reasons.

Now some living arrangements need to be made cuz he's going to be in a wheelchair. I think he may get a electric one. Which would be right up Jerry's alley cuz he's had all those electric/battery toys from go carts to golf carts etc :o)

Jerry's state of mind through all this has been good and he keeps everyone laughing with his humor.

Well, I guess I could go do something and get my week started here.

I hope everyone has a nice Thanksgiving. I'll let you know how ours goes. I think we'll just be laying low at home with Max here.

Lisa

Monday, November 13, 2006 7:39 AM CST

Morning,

Kinda nice to see alittle snow laying around this morning. I'm getting sick of the brown look outside.

We took Max on Saturday with us to go look at cat trees for our cats. He still doesn't seem to like his TLSO on after a period of time cuz when we got to the first store he started to get upset. So we took it off and then he was fine but looked bored and tired LOL.

He looked at the fish in the fish tanks but the other animals at these two stores we went to were hard to look at them cuz they were either to high up or to low down for Max to see.

But for the most part Max just didn't seem interested in going out and about shopping. Kinda still not feeling quit well and I think the new med for his seizures (that we are taking him off of now cuz of drooling and sleepiness) is still making him doopy.

He was alert though when I talked with him and would look at me when I did. He talked alittle with me too when I asked some questions.

Other then that not a whole lot more to write about.

I don't have any appts for Max though I do have to check into a flu shot and call one Dr. re: his reflux med.

I haven't heard from Shari if horse riding is going to start up here again. I wonder what's going on in her life that might be causing her not to start up again. Christmas is going to be here soon and I would think she would want to take time off around then so maybe being so close she'll just not start up again til after Christmas. I could call her but.....figured she'd call me when she's ready.

Have a good week
Lisa

Wednesday, November 8, 2006 7:33 AM CST

Good Morning,

Well actually it isn't for me. I just couldn't sleep last night and I've had this nagging headache off and on for like a month.

I've come to the conclusion that it's because I have like 5001 things going through my head that I want to get done around the house and yet I have Max on my mind and wanting to get him out and about (seems every weekend is busy or just flies by with no progress).

I saw how nice the violets are at the bank I clean and so that brought my attention to my neglected violets (that were my grandmothers she's had for ever so their like over 45 years old). So when Jim got up for work this morning I just got up also and started in on my violets cleaning and water them in the tub. Jim thinks I've gone crazy. I actually have to replant them cuz the dirt is old and icky.

Well anyways enough about me. Just had to get that off my chest and maybe I'd feel better LOL.

Spencer was home the last couple days with a sore throat and cold. Keep thinking I'm going to get this cold everyone has and that's why I have this headache but nothing happens (so I guess that's good but........)

Max is still congested some in his lungs. I guess this new seizure med isn't working for him. Lately he's been drooling and not beable to eat orally and I noticed he's been sleeping alot when I visit.

So we called his neuro Dr. and we are weaning him off this med.

I'm just ready to give up on trying to control his seizures. Seems when we try something different he ends up suffering from the side effects and then we have to go backwards to get him back in shape.

I mean our hearts are in the right place trying to help him but who suffers in the long run.....Max with feeling icky and unable to do what he used to do. And then I get worried hoping that we didn't ruin what he had going for him.

So maybe that's where my headache is coming from LOL. I know there's a reason just trying to figure it out.......maybe that could be why too. I should just stop thinking.

We were going to take Max to a movie this weekend. The Dr. said he should be awake more and better in the next couple days with the lower dose of this med. Can't take him off all at once but can go half and half I guess so that's good.

But what we decided to do with Max was to go to Petco on Saturday. I've never been there but I guess it's kinda neat with the animals they have to look at.

The main reason why I want to go there is cuz of this one new stray cat that showed up this summer, Ratchet, is NUTS!!!

Climbs all over the house onto different things and knocks everything over (he's very clutzy) He loves to climb trees outside. So we need to get one of those Cat tree things for him. Especially before Christmas and we get our Christmas tree in the house. I know he'll be trying to climb that and I think if he does he'll one wet cat all Christmas from my squirt bottle (Ok, that's my nice thought of what I would do with him I won't tell you what really was crossing my mind LOL Just kidding though I wouldn't really hurt him).

So, that's about it for now. I'm going out to see Max today cuz he has meds I have to deliver and I'll have to explain to him about this med thing and tell him he should be back to his old self here soon. And to apologize for us just trying to help his seizures go away. But we have to try sometimes.

Oh good look, the sun is shining. This should help my brain.

Thanks for letting me vent. Sorry this was more about me then Max.

I'll update after the weekend and we'll get some NEW PICS for once to share with you.

Lisa

Wednesday, November 1, 2006 7:38 AM CST

Good Morning,

Well it's that time of year again where we will be going to get our Christmas tree soon, right after Thanksgiving (that is Spencer and I 2 years ago,on the front page, you can tell cuz now he's taller then me LOL).

I bet we'll have snow this year on the ground when we go to get a tree.

I can't believe how cold it was last night for trick or treating. I think this will be Spencer's last year cuz I heard from Spencers friends mom's that their kids didn't really want to go but the mom's wanted them to go. I know why cuz we all want the candy more then the kids LOL.

I think the only reason Spencer wanted to go was cuz he had Jim and I make this costume from one of his video games. I'll put pics up later when I get some from Sugar Lake that they took of Max. I just bought Max a goofy mask and wigs.

I just missed Sugar Lake having a party and pumpkin carving with the kids and their costumes yesterday but they took pics so I can ask if I can get a copy of a couple.

Max still has congestion in his lungs and some times sounds terrible.

I went out there last Saturday and he didn't seem to want to converse with me. He kept looking down to the left when I would talk with him. But what was interesting was when I was playing with him with some of his toys, I pulled out these flash cards with colors and shapes.

I would hold two cards up and show him like a blue circle and then a white one and would ask him to look at the blue circle.

To make a long story short Max did really well at looking at the right colored shape that I would ask him to look at and even would switch them around and ask again and he'd look at the correct one that I had asked.

But what was interesting was after I had done this once, he would give me a big loud "SIGH" and look away. So I would stop and asking him if he didn't want to play this game. I would talk with him awhile and then do the cards again and he would play for a while and then let out a big "SIGH" again.

He did this like 3 times with me stopping each time to talk with him.

I thought that was very interesting that he would do this SIGH each time. Almost to say "hey, I know my shapes and colors so why are we doing this"

I guess also when his nurse that we had here at home that works out there now was giving him a bath last weekend in the evening was talking to him about how he's grown so much since she started to care for him. She had told me he turned his head to look at her as if saying "what are you doing here on the weekend working this time of night".

Cuz when I went out to see him I was worried that he was loosing his ability to communicate with us through his voice and eyes. Then I also thought how he was looking down to the left. I remember when horse riding when Shari would feed Max after riding and when he was done he'd look down to the right. Would look back at her and then she'd try to feed him again and BAM! he'd look down to the right again.

So when I was out there yesterday I was on his left and he'd look down to the right like saying I don't want to talk. But yet he did look right at me mostly when I did talk to him more then not.

So I'm feeling better that he's still there and can do as we ask and show when he doesn't want to. I think he's still not feeling up to par so he's really tired alot and of course yesterday after the party he was probably tired but did well hanging in there with me for our visit.

So, that's about it for now.

I had some awesome dreams the other day about Max (Spencer too) and this time he wasn't the little boy he used to be he was actually his age in my dream, up and running around and he made his own soup with crackers LOL. He didn't put it in a bowl, just ate it right out of the can and was laughing at me. It was a nice dream to see him so full of life. I went back to bed like 3 times yesterday morning (while getting spencer up for school) in hope that they continued LOL. And they actually did.

I like to ask for prayers for Jerry and Karen again if you guys can take the time to do so every so often. He's having a hard time being that all his finger have been taken off due to his diabetes and only has a thumb left on his right hand.

He is unable to do anything of course cuz of this and he gets depressed about it (which of course who wouldn't). Karen is looking into getting some one to come in a few times a week to help with various things and his appts.

I was talking to Karen yesterday and I felt like the tables have turned with me giving advice as like when everyone was giving us advice after Max's accident. And thinking how we take so much of our bodies for granted until we loose any part of it and are unable to do the things we used to do.

Well I should get my day started here. Thanks so much again for your support.

Lisa

Wednesday, October 25, 2006 7:44 AM CDT

Max is saying Happy Birthday Grandma!!!

Good Morning,

I saw Max finally yesterday. Spencer had a friend over last Saturday for a sleep over so didn't get to see Max on Sunday like I wanted.

But Max is doing much much better. Thank you all for your thoughts and prayers for him.

He was sleeping in his stander when I went out to see him. I don't know why he's so sleepy all the time now. Could be his new med. But I would think being on it for this length of time he'd gotten over that.

I thought I had more to say about Max but I guess I don't really. Like I said he's always sleeping when I go out there. So, I don't get anything out of him. I did lots of ROM on his arms when I was there and that's about it. I couldn't wake him up.

It's my mother (in law)(Joannes) birthday today. I would like to wish her a Happy Birthday today

I'm so glad that your my mother in law and that we have such a wonderful relationship. I Love you very much. Well we all do of course but I'm the one writting this update so........LOL

Well, that's it for now. I'm going to see Max on Saturday cuz I have his Wheelchair cuz we have to take it in to get it worked on (and hopefully the van) so that his new chair works in the lock down so we can use it in the van without him rolling all over the place. Guess that would be illegal to do.

I have some new pics of Max sleeping in his stander so I'll work on that real quick here.

Stay warm,
Lisa

Saturday, October 21, 2006 11:21 AM CDT

Hello,

Just thought I would update you on how Max is doing. His temp has been up alittle but not as bad as it was early this week.

But now he has the gunk in his chest.

We're all going out there tomorrow to love him up some. Spencer doesn't really want to cuz he's afraid of getting sick. I told him he's on meds now so he should be ok not to catch it. And besides I said it's not like you kissing Max up like I do LOL.

Our neighbor's little girl is sick with the same thing also. Ear infection and throat deal. Now she has the cough too.

And at a couple of my jobs there are people sick so something is going around.

I'll probably update again Monday

THanks for all your prayers
Lisa

Wednesday, October 18, 2006 11:10 AM CDT

Hello,

I just wanted to quickly update and ask for Prayers for Max.

He caught a nasty bug that's causing his temp to rise up to 104.0 and the nurses couldn't keep it down so I took Max to the ER (His peds Dr. was leaving for the day and rest of the week go figure. So she had us go to the ER).

We spent all day there and almost got out in a reasonable time but Max started to seize terribly and his body was shaking and he was holding his arms tight. I hadn't seen him like this before so I panicked and asked for a Dr. again asking him to hurry up so I could get him back to Sugar Lake and into bed.

Well he wouldn't let us leave with Max acting like that. So, they gave him his rectal valium and Ibuprofen and his antibiotic. Then we waited some for his temp to go down. It had shot up to 104 again.

When we did leave finally to go to the pharmacy they said it would be a 20 min wait. ( I think everyone that was at the ER was now at the pharmacy cuz they were busy at the ER Too) We waited 45 mins for his meds.

I found out yesterday that I'm the most impatient person. I pace like a caged animal ready to pounce on people that get in my way LOL.

Jim showed up in the ER after work which helped me some. I hate doing these things alone. But Max and him were waiting out in the car and I know Jim's patients was wearing thin also.

Poor Max with a 103 temp when we left the hosp is probably just feeling miserable and wanting a bed.

He must've even had the prickly skin thing going cuz I tapped him on his arm a few times and he just cringed.

So I gave him a nice neck rub thinking if he's like the rest of us his spine must hurt from his nect down to his tail bone.

So I had enough excitment to last me for along time again. Oh and our van door on the lift side broke again so I had to lift Max out of his wheelchair and lay him in the back seat and then get his chair out and then him back in.

Second time around Jim was there to help me lift him in all together.

I just don't like see Max go through this stuff. He looked just fine when I picked him up but when his temp got high he just moaned and groaned like I do when I'm sick LOL.

I explain what he has and hope he understands.

He's been so well for so long that it was a shock to me and my mothering/nursing talents that I hadn't had to use in awhile. And with Max when he can't tell you and he acts different then the usual, I myself am not sure what's what. Like when he was just shivering I guess would be his high temp but he's never had such a high temp and I've never seen him shiver plus with his siezures on top of them I couldn't tell them apart really.

Well, the nurses said he seem to be better today and his temp is goes up and down but the Dr said it would for the next 48 hours.

I'll let you know how he is at the end of the week. I'm going out there Friday to see him. I have to get some errands done today and work days tomorrow.

Thanks for sending Prayers Max's way,
Lisa, Jim, Spencer and Max

Friday, October 13, 2006 7:48 AM CDT

Well, Good morning,

I was going to wait to update til I went out and seen Max with his teacher today cuz I wanted to see how he does and what he does.

But, maybe some of you have heard that the town of Buffalo was without heat yesterday and today (well for me I still don't have heat).

So, now I have to sit here and wait for them cuz they have to come into the house and relight the water heaters. Our furnace lights itself I guess but they have to turn the outside thingy first.

If they don't show up I have to call them and set up an appt. What a pain in the butt this is. I don't go nowhere without at least a decent head of hair. I can cover up any stink I may have with out having a shower with lots of body spray LOL. Ok, I don't stink but I do feel better with a shower and I do have to have my hair washed. I guess I could put a hat on like guys do LOL.

But I don't want to miss these guys if they show up to turn the heat back on.

So, I really don't have much to say. I was out to see Max on Monday but he was sleeping while in the stander.

I talked to him alittle bit and he grunted at me. Probably telling me to go away and let him sleep. He did open his eye's a couple times too but quickly went back to sleep.

I do have to tell you how wonderful well Spencer is doing in school. He's getting all A's and B's and the teacher all said how excited they are to have him in their class and how he asks questions above and beyond their expectations of the kids when wanting to know something or learning how to do something.

There was some state wide English test the kids had taken and they expect 6th graders to be at least in the 600 range and Spencer scored over 1200.

One teacher even said that Spencer was well organized. WELL THIS BROUGHT TEARS TO MY EYE'S!!!! I literally felt tears swelling up in my eyes cuz this was a problem for Spencer all through elementary school and I thought he'll never be organized if he doesn't get it by now.

So we are very very proud of him and I just wanted to share that with you all to let you know how well he is doing after such a harsh first few years after Max accident. I'm glad it hasn't affected him in any way (well that we can see or he lets us know). He was pretty young so maybe that was a blessing in itself and that he didn't quite understand at that time. You know kids at that age. Life goes on and business as usual, Play, play, play.

We'll have to get out to see Max this weekend being I didn't get out there but one day cuz I had an extra cleaning job this week and I thought I was going out there today. I need to get my Max fix in more then one day a week even if he does sleep through my visits. LOL

Stay warm,
Lisa

Friday, October 6, 2006 7:13 AM CDT

Morning,

I'm sitting here crying after watching a video a friend sent me of a father and son (CP child) where the father ran a triathalon with his adult son. Swam with the son strapped to him behind him in a floaty boat and then ran carrying him to the bike and placed the son in a seat attatched to the front of his bike and then placed his son in a stroller and ran with him to the finish line.

And then they had a song playing that made you cry even harder.

I wish I could attatch it to the site but I don't know how to do that.

Oh well, so anyways. This busy week is almost over and it really went pretty well with out any problems

Max had his baclofen pump turned down so he's under a 100 micro grams a day which is exciting for us and so far (knock on wood) he's doing well.

I have to set up an appt today for botox to his right wrist for this month.

We got his new wheelchair yesterday and that went smoothly. They guy got it done in 3 hours with only a few minor adjustments.

It's actually not really any bigger, just wider so that's nice. I was picturing this big honkin' thing we'd have to deal with.

I'll have to get out there and take some pics of it and we also got a pretty nice head rest for Max that may work way better the ones in the past we've tried.

And the neatest thing is that Spencer got himself up and going for school with out a hitch (we had to leave the house right when he had to get up). Well I had to call to make sure but he did fine with out me hounding him.

Max slept the whole time we were at Gillette and then of course woke up on the way back. He was so cute sitting back there looking around out the window.

We couldn't use his new chair in the van cuz we have to get it fixed to use the lock down in the van. SO I have to work on that today and go through all the red tape to get one of Max's insurance things to pay for it. I can imagine it's not cheap and I hoping to have some other things fixed on the van that's related to the ramp so hopefully Max's waiver will pay for it from the county.

Other then that not much to say about Max.

Spencer has made 3 new friends at school that live close by here. I haven't met them yet but Jim has so I hope their nice kids. Seem to be so far. And he's gone bike riding with them a few times. I guess it's time for a cell phone for Spencer if he's going to be out and about and hope he doesn't loose it (oh I'm sure we will have issues there down the road LOL)

I hear Ezra is doing well in Korea. He seems to have adjusted to life over there. I think of him often and just can't imagine being there myself. I Guess when your younger and not set in your ways (as us older folks get) you can handle change better.

Well, I better get going. The day is going to go fast and I have an extra cleaning job today so I have to start work earlier then usual if I'm going to get done at a decent time tonight.

Have a wonderful fall weekend,
Lisa

Saturday, September 30, 2006 9:38 AM CDT

Good Morning again,

Looks like a nice sunny day. Notice I always start out with a weather report. Must run in the family. Jim is a weather freak most of the time.

So speaking of family here's what's been happening the last week.

My father in law has not been fortunate with his health so prayers are needed when you have time to say some for him and Karen.

He's been having his fingers taken off cuz of his diabetes and the circulation in them have just gone bad to where they needed to come off (most of them) to avoid further health issues.

And then a week ago this last friday he had a medication reaction and stopped breathing when at the dialysis.

He went to the hosp and is better now but sure did scare the heck out of him and the rest of us.

Then last Monday I received an email that an old friend of mine died in a car accident. I couldn't make it to her visitation or funeral due to work but have some cards to send out to family and friends. Which I need to do today and let them know that they are in my thoughts and prayers.

Then of course yesterday was Max's 6 year anniversary of his accident. So, it was a tough week for lots of our family and friends.

Next week will be busy with Max having two appts. One is a pump refill and I think I'll try and have his pump turned down to see how he does being his tone is still loose and the other is his new wheelchair which will be kinda exciting to see him in a new one and new color (artic cat green is what we call it but they said it's oh heck we can't remember it now LOL)

Any ways, Max and I had a so so day yesterday. When I picked him up he was sleeping and I talked with him and well... I can't explain the sound he made but it was different and loud. I asked him to say hi mom and he would take a deep breath and make this big "UH" sound. It was cool to hear something different come out of his mouth but like I said he was sleeping and I always thought if a word came out it would be when he is sleeping and he'd do it subconsiously (sp?).

We went to Target and looked at the halloween stuff and I think I got a half smile out of him one time.

Then we came home and just hung out. I was holding him and when I had to get up to getting him going back to Sugar Lake I could barely lift him off my lap and the way I was moving him back and forth I actually got another smile out of him so I asked him if he thought that was funny and did it a few times over. Well fun once not 5 times over MOM!

Then on the way to Sugar Lake, whiched happened to be around 2:30, I looked at the clock and it was like 2:50 and of course my brain went to that day and every time I looked at the clock as it ticked by I thought of exactly what happened 6 years ago at that time.

So I reached back to hold Max's hand and cried some. But not a good thing to do really cuz I almost went into the ditch a couple times while rearranging his head cuz he was snorting (didn't have his TLSO on so he doesn't sit well in his chair).

I thought to myself, Good Gosh I don't need to get us in an accident on the same day at the same time so get your wits together and leave Max's head alone he'll move it if he really needs to ( the snorting drives me nuts).

SO that was that day, done and over for another year.

Oh did I tell you that the nurses at Sugar Lake asked if they could take Max to a Christmas party that Pediatric home services has every year for their clients.

It's his vendor where they get Max's supplies from and the other kids at Sugar Lake. They are asking the parents of all the kids and if they can go they'd get a van and take them.

I guess this PHS did this last year and had like 700 family and kids there. They have food and a gift for each child. Kinda want to go myself and check it out. I haven't heard anymore about it but will find out and let you know. I would think we could go also.

Nice though of the nurses wanting to do that for the kids. I gave them some fall flowers and roses yesterday in appreciation for caring so well of Max and doing special things with him and the kids.

Well, I should get going. I have to clean one of my jobs today cuz I didn't do them all yesterday cuz I had to take a nap after bring Max back cuz I got myself all bummed out. I guess I expect to much out of that day. I always think some miracle will happen on that day or something new out of Max and when I don't get it I feel empty inside.

Have a wonderful weekend. It's suppose to be super nice out so time for me to get my outside stuff ready for winter cuz I don't know if I'll get another chance at it.

Lisa, Jim, Spencer and Max

Friday, September 29, 2006 8:04 AM CDT

Morning,

Just a quick update.

I'm going to pick Max up in a couple hours for our day together that we do every year on this day.

It's been 6 years today that his accident happened. I can't believe how long it's been but yet it seems just like yesterday. I can remember that whole week and what we did like it was just this last week.

I was talking to my boss yesterday and he told me he was at a wedding (just got to the reception)that day when he got the call from the hosp (which I guess I didn't know). He said he didn't say anything to his wife or anyone til the reception was over. His wife was in the wedding. I felt bad that he had to hear such bad news on what is to be a happy occasion.

I know I've talked to other people about that day (since that day) and even today people can remember exactly what they were doing when they heard about what happened to Max.
Kinda like "where were you when JFK got shot" type deal.

Well, I can actually say time has taken over my emotions and I don't get so upset as often as I have in the past and not every month like before. Though the tears do come still but usually when Max isn't feeling well or his seizures get more out of control, stuff like that bring up the whole "why" thing to my little boy.

But we do have to be grateful and thankful that Max has done so well and has stayed so healthy in the last few years.

He's one tough little boy and he's shown us that more times over and over. We'er proud of him and his accomplishments.

I would like to thank all of you again for following Max and his life, his ups and downs, his small but yet very big accomplishments. Thank you for your prayers for him and our family (even our extended family when needed).

This site, I know, has done wonders for me to get my thoughts out of my head so I can keep going and continue to see Max for who he is now and not dwell on the past. And your posted guestbook entries have been such a great help too in our survival though all this.

So, I will post again after today to let you know what Max and I did (not to much though cuz I just balanced the check book LOL). But I think I can squeeze a toy out for him :o)

I would take new pictures to but we still haven't gotten our camera back from our friends house dang it. I didn't even think about it till last night.

See ya soon,
Lisa, Jim, Spencer, Maxwell

Saturday, September 23, 2006 9:17 AM CDT

Good Saturday Morning,

Finally the weekend is here. Though it came up fast it also seemed to take forever. I was so tired come Thurs. and couldn't wait for the weekend.

Max is back to his ol self now. I was out there on Weds. and of course he was sleeping. I guess he got sick right after breakfast. I'm assuming his reflux had something to do with it. Kinda like old faithful some times he just gets to full and blows. Or at least it's not going down well.

He also had a swollen, warm ankle the other day but that seems better after I told them to let him lay low and skip the stander. He didn't mind having ROM done on his ankles and didn't cry.

I was out there yesterday to see him and he was getting his water while sitting in his tumble form chair sleeping (again, I think the new med is making him tired but that should go away after a week or so)

But when I talked to him, his little lips started to move and he started to talk and then woke up for me right away. Of course like usual when he wakes from a nap he has seizures for awhile and then they stop and he can visit.

He sure talked up a storm with me.

I bought him some new good smelling lotion and gave him a hand/wrist rub and did ROM on them and then a foot massage and did ROM on them.

Next Friday is the anniversary date of his accident. It's been six years now and it's on a Friday just as it was in 2000 so it's made full circle on the weekdays.

If it's nice out, I was going to take him down to the lake where his accident happened to see if shows me any signs of recongnizing the place.

If it's not nice out I was thinking of taking him to toys r us. I suppose he'd rather go there anyways so maybe I'll just do that.

I was thinking about Christmas (already) and was thinking I should get Max some new riding gloves (Shari bought him a pair last year and their to small) and also some cowboy boots which he loved when he was little (but don't all boys go through that faze LOL).

I told Spencer to start thinking what he wants so I can start squeezing in some gifts here and there. Spencer is the spendy one for us LOL.

Well, I should get my day started and start to clean the house up some. It's getting knee deep and we have to make room downstairs for our outside stuff and finish the room downstairs for a place for Spencer to do his homework. He wants a quite place with good lighting. We didn't get the window in so he can't sleep down there this winter. Maybe next winter we'll get to it. One of those big projects you just put off cuz once you start you better finish.

Have a wonderful weekend,
Lisa

Monday, September 18, 2006 10:08 AM CDT

Happy Monday morning......Yeah right LOL

Being lazy today til I have to take Grandpa Jerry to the Dialysis today.

I think I have a construction clean up job tomorrow so won't be able to get out and see Max til Wednesday.

I did get out (finally) to see him last Friday cuz the nurses were telling me how Max seizures were getting worse.

I ran some errands and almost went out there during lunch but figures I'd wait cuz if I went while Max was eating I would have just left and had no time to hang with him.

Then I almost had Jim go out there with his meds cuz I wanted to get to work. But I ended up going out there around 4 pm.

Well, Max was just getting in the stander and I was talking with him and he was seizing none stop. I almost had them give him the rectal valium.

I mean he was having one after another of the different kinds without havnig any down time between them.

I was going to wait to call his neuro but decided I would call her on Monday (thinking that they were gone for the day that day).

I had asked the nurse about his seizure meds wanting to know when were the days that he finally got down to his doses on the 2 that we were lowing cuz at the higher doses they weren't helping. And when they started the new one. This way I could tell the Dr. when all this started and his seizure were getting worse.

As the nurse was going through the med sheet she said that his one med was stopped (and at a rather high dose that was given 2x's a day).

I said that this med is not to be stopped and that we weren't dropping any meds just lowing them and adding one.

We then looked back at the dr.'s order and the other nurse called the Dr. to confim that he was to be still getting this med (heck I was at the meeting and I know he was to get this one)

Well, he was to be getting it and now he hadn't had it in 3 days cuz some one had yellowed it out on the med sheet as if it was discontinued.

Poor Maxie. This was why his seizures were so bad and him probably going throug some withdrawals (he did run a temp there a few days back).

The Dr said she'd send a fax for ordering a dose to be given right then and there and then get back on schedule the next day. I said the heck with waiting for the fax give it to him now. SO they did.

I sure was glad that I went out there when I did and didn't make any of those other choices of going out there earlier or having Jim go out there.

I also am glad that I asked about his meds and found out that the one was dropped.

What I'm really happy about is that fact that Max's seizures aren't getting worse and that there was a reason for them to be getting worse.

So that was our excitment for the weekend and plan on having no more for awhile. LOL

Max is doing better from when I last talked with them. I'm going to call here again soon to see how he is doing being I can't get out there til later in the week/

I was asked by a friend to put new pics up but I really don't have any so I suppose I could put some older ones up.

We just having done anything to take pics about and we should have brought the camera at our family picnic but forgot it.

Max doesn't have any appts til the first week of oct. and one is a pump refil and I'm thinking of trying to lower it this time around and the his new wheelchair is coming in and we have to spend all day while they custome fit it to him body so that will be a loooong day.

I suppose I should get moving. I really shouldn't sleep in late cuz my day just goes by to fast and I get absolutly nothing done and that fustrates me.

Stay warm and lets hope we get some more nice weather before the snow flies cuz we still have lots of outdoor stuff to get done and get Max out some more too.

Lisa

Monday, September 11, 2006 9:56 AM CDT

Morning,

OK, this weather is just to cold for me and to early to be here. Just makes me want to curl up on the couch and do nothing. Good thing I don't have any appointments for awhile so I can do just that LOL.

We did take Max out on Saturday when it was chilly out. We first took him clothes shopping and then came home for lunch and then off to Lake Independance for a family picnic with my Aunts/Uncle and cousins.

It was just a small gathering cuz most couldn't make it. But it was nice to see those who came.

Max did really well. He was looking around and watching other families play games and stuff.

Other then that not much to write about. Our van door broke while at the picnic so we have it bungied close. It's the side that Max uses. So hopefully Jim can fix it or we have to take it in to Rolex and that's a pain in the you know where.

Like I said we don't have any appts and horse riding is on hold for awhile so, just laying low and getting back in the swing of the school year and that fact that winter is on it's way.

Lisa

Wednesday, September 6, 2006 6:51 AM CDT

Good Morning,

Well, I had a terrible first day of school. Spencer did fine but I must've had the seperation anxiety thing going.

I cried all morning missing Spencer and hoping his going to a new school is going well.

Then I was missing Max so I went and saw him. Boy did he get the hugs and kisses.

While going there I was thinking about Ezra going to Korea and wondering how Laurie and John will hold up without him around and being so far away (Jeremiah is away at school). Heck I was missing Spencer and he was only down the road and coming home at 2:30.

And Ezra was having a hard time leaving. I felt so bad for him. I know that the unknown can be soooo scary. Leaving Gracie is very difficult for him also.

So yesterday was a depressing day for me. My last day of vacation til probably next spring and I spent it crying.

I think I had every thing running through my head yesterday from Max's accident (doing the "why him/us again" to Spencer starting a new school and being away all day to Ezra leaving and Little Gracie living in South Dakato with her mom (that's where Gracie's Mom's parents live).

It was like everyone has just up and left.

I did watch some old video's just missing my little boys. I'm sure some of you know what I mean when I say I miss those days when the kids were small and running around driving you nuts. Never thought I would say I miss those days but I do from time to time.

I did accomplish some things yesterday such as going through Max's clothes. He surely has grown and we need to take him clothes shopping on Saturday.

Well, I should get Spencer going for school.

If I could ask of you to take a few minutes and say a prayer for Ezra and his family. And that Ezra's journey while in Korea will be a safe one for the coming year,meet some nice army friends and find it interesting and adventurous (as they say in their ads).

Thank you for your support not only for Max but our whole (extented) family.

Lisa

Wednesday, August 30, 2006 8:33 AM CDT

Good Morning,

I don't have a whole lot to update on this time around.

Spencer, Max and I went to visited my Mom and her husband before they leave back to Texas on Tues.

Max had horse riding on Tues and that went pretty well. Max was kinda spacey and didn't respond as well as he has in the past. I know he did some good looking around but they had a few girls there helping and when they all talk to him and tell him what to do I think he gets confused and then goes away in his head and spaces out.

Spencer had his open house on Monday at the middle school. This should be an exciting change for him. Well, for all of us. I hope all goes well for him. I get a little worried off and on thinking about it. But he doesn't have to walk around the whole school to get to his classes. They have them in this one sections (wing like) part of the school.

We just have to reenforce him to really listen to what the teachers say so WE know what's going on so we can help him if needed.

Jim too is going to the middle school soon here. He's finally graduated from elementary LOL. So both him and Spencer will have lots of new things to learn this coming year (this could be really tough on me LOL).

Jim is still not happy about the move and is really nervous about it. Guess it'll take awhile to get used to and to feel apart of the family (staff) that he felt with Clear Springs.

Well, I have a long weekend coming up so I hope to get the rest of Spencer's school supplies that I wasn't sure what he needed til we went to the open house and some school clothes.

I also need to go through Max's things and clothes and see what he needs for the winter. It's not easy to do when he's not here cuz when I'm out there I just want to hold and kiss him. But I have him in the room and ask him what he wants to keep and get rid of.

Shari is taking a break from riding for a few weeks to get her son ready for school and get some things done.

I hope everyone has a nice Labor day weekend. Looks like it may just rain all weekend here.

Lisa

Wednesday, August 23, 2006 9:17 AM CDT

Well another busy week is here. I have time to update and then I have to run again.

The summer just flew by and now I have to get Spencer finished getting ready for school. We still have to go up to the middle school and get some items for Spencer. He's also due for shots this year or next but decided to get it this year while it's in my head otherwise I'll forget next year I'm sure.

Spencer and I have a Dentist appt tomorrow. Gosh how exciting especially when it's my birthday tomorrow LOL. I really know how to celebrate don't I LOL.

Lots of Birthdays this month, My sister in Law Laurie had her's last week. Burl, our nephew, had his yesterday and then there are some other friends Laurie was telling me about yesterday who have birthdays this month.

So yesterday was horse riding for Max. It was a scary and yet very sad horse riding day. But Max gave Shari some nice talking and a quick smile and some pleasant facial expression that made up for it.

Shari has this horse named Shalom and she's had him since he was like 4-5 months old and her son Joe rode him and jumped him in the year to come. The horse is 17 years old now.

Shalom has cancer now for a while I guess and it's finally taking it's toll on him. He's gotten very skinny.

Shari used him to ride with her and Max saying that she likes and see's the horses doing better when you keep working them and riding them.

I should tell you too that Max was sleeping super hard when we got there and when riding.

Well, Shalom decided riding is in the past now for him and Shari had told me earlier that she has been trying to decided when the time was right to put him down (no nice way of saying it).

So when Shari and Max were riding, Shalom stopped and was just to weak to go on with them riding him.

He slowly laid his hind legs down and then slowly laid his front legs down.

Shari had a good hold of Max and Becka (the side walker) was on the side that Shari had Max's upper body so when Shalom laid down Becka grabbed Max's upper body and Shari got off Shalom and then I went around to take Max from them.

Poor Shari just hugged Becka crying so hard for Shalom. Then I started to cry.

I was very impressed how Shalom just laid so gently down knowing he had people on his back and didn't just flop down and roll (like Shari had said praising Shalom for not rolling).

Shari's horses are obviously trained so well that after watching this happen and watching Shari and Becka handle Max (he's not so little anymore ya know) I feel very comfortable with having Max ride there.

I actually, seeing Max was ok, was more concern for Shalom then Max.

So Shari apologized over and over and I told her I understand and there was no need to apologize.

I thought we were done for the rest of the session but she went and got Lady for Max to ride.

In the mean time Max had woken up and I told him what happened and that it would be wonderful if he would talk and smile for Shari cuz she's so sad about Shalom.

Well, he did alot of talking and like I said gave us a smile and some pleasant looks.

So that was our excitment for the week I hope. I feel so bad for Shari and her family having to let Shalom go. But I guess that's part of life. Heck I couldn't even handle it when our little chameleon did in the palm of my hand. Spencer and I were petting him and we saw him take his last breath. We just cried after that. I guess I was thinking of him like the gecko on those commercials LOL

Well, I'll update again soon. Looking forward to get Max out and about but his stroller is to small for him so need to figure out what else we can do if we can't go strolling in the woods this fall.

Have a good week,
Lisa

Thursday, August 17, 2006 9:47 AM CDT

Good morning,

Well, I told you I would update after Max's neuro appt and so here I am going to do so.

We had a very "CLOUD NINE" appt with her.

First Max horse riding was pretty fun. I rode with him again and Max did his talk for the most part.

Shari was getting Max to look at things and when she was trying to get him to look at the beach ball cuz we were going to hit it back and forth, Max was to busy watching one of the other girls riding a horse around the area at the same time.

It was funny cuz Shari was trying to get him to look down at her and when the horse came around that was being rode his eye's would turn to them and watch them go around.

He finally did pay attention to Shari and we hit the ball back and forth a few times.

He did his talk off and on but when he did he chatted up a storm.

When we had his neuro appt yesterday of course we talked about his seizures and are adjusting his meds and are going to try a new on later on here.

Also Max once again slept through the appt so he didn't show his Dr. what he can do.

His Dr. said that this new med could compromise his oral eating and if that happens we would stop cuz she was so impressed with his weight gain from eating orally. She would like to see him keep that up.

She asked about Max tracking with his eye's and such. Well, I sure told her a ear full about Max looking around and his talking at the right time when asked or how we could walk up to him and he'd look at us and then start his "Uh's".

She was so impressed with this too and said that his neurological system was working.

She said if his eye's move first and then his head that there are things working in his brain (ok, I said that she said that his neurological system is working)

If it was his head moving first and then his eye's that would be more of a reflex I guess. Not purposeful like him looking first and then turning his head some.

Of course we always knew Maxie was in there some where but to hear his Dr. say he's got some thought process going on in there was........ok I'm still kinda in shock considering they didn't expect Max beable to respond in any way. Oh we talked about that too when he gets stiff that, that is his way of letting us know he's not wanting to be messed with or something is bothering him She agreed very much that that is one way of him showing us.

So now we need to get some more horse riding in cuz I think that is a BIG help to Max and I have to get out there more often or get Max home to work with him more to see if he can progress more in some way.

And of course I've been thanking GOD(many times in my head through out the day) for such a good appt and for Max's wonderful health he is having and the progress he has shown us.

Thank you all for your continuing thoughts and prayers.

Lisa, Jim, Spencer and Maxwell

PS Jim had to go to Pool school for his new school he is going to and he passed with flying colors yesterday (very good day yesterday for everyone).

Monday, August 14, 2006 10:25 AM CDT

Hello,

I'm glad I don't have to water my flowers for a while with all the rain we got yesterday. Not that they are that great anyways. Over growing now that it's the end of the season.

Another quick update. Max see's his neuro on Wed so I'll update after that appt. I don't know what she'll do for Max re: his seizures. Just doesn't seem to be anymore choices and I think they are just something we will have to accept as part of Max and hopefully they will leave on their own some day or lessen.

We went out to the family party for Ezra and Max was looking crabby and I had the talk with him that he was to put his happy face on. Well, after we got there and took his TLSO off and laid him on the couch he was fine.

He did talk with Lauries sister in law from out of state who works with special needs kids at school and Max seemed to really like her and started his talking to her when she talked with him. In fact he did again when she had came back to talk with him later on too.

I should Max a pic of him riding a bike when we had gone camping a few years ago (he kept stealing the neighbor campers son's bike and they said he could use it but we ended up coming home and buying his own. Guess he was ready to ride the bigger bikes and we just didn't know LOL)

Anyways when I was explaining and asking Max if he remembered that he started his talk with me about it.

It was nice to see everyone again and they all thought Max looked really good (I give credit to Sugar Lake for caring so well of him)

I'm taking Grandpa Jerry to dialysis today. He's doing well off and on. Still feeling weak and his fingers are not doing so well. May have to remove some/tips cuz they just aren't getting the blood to them to keep them healthy cuz of his diabetes and poor circulation.

I would appreciate it if you keep him in your prayers. I know it must be hard on him cuz he is such an active man and to be so weak some days and unable to do the things he loves makes him depressed. Though he keeps his humor about it all and keeps a postive attitude for the most part.

I better get moving. almost 11am once again LOL.
Thanks agian for you support/prayers not only for Max but for our whole family (Jerry, Ezra, who leaves at the end of the month for Korea)

Lisa

Thursday, August 10, 2006 7:56 AM CDT

Good Morning,

Thought I would update.........I thought I heard bumping/walking sounds in the house and thought Spencer was up, but he's still in bed. I hate when I hear noises in the house, even when it's daylight out. I get real wiggy when I hear them at night LOL.


Anyways, Max has been doing pretty well. Started having some bowel problems again (that would be going on his own and very hard for him) I think we may have solved it hopefully. Just needed to maybe add more water to his diet cuz we've changed his food that he's been getting with more healthy stuff.

He went horse riding Tues and he was really tired and sleeping on the way there.

Once he did wake up he seemed crabby and when he would say his "UH" "UH's" they weren't his cute sounding voice they were more growly sounding as if he was just wanting to be left alone or quite asking me to say "on" (to get the horse to start walking".

We also saw some salamanders in the arena so we picked on up and showed him. Don't know if he could tell it was a salamander cuz it was full of sand. LOL

I also rode with Max again. I'm getting kinda used to it. I can see where riding is relaxing (if you know what your doing that is).

I noticed that on the way to riding, Max was sleeping and his hands/fingers were clenched tight. On the way home he fell back to sleep ( I told him he could if he'd just wake up for the one hour of riding) and I noticed his hands/fingers were nice and relaxed and not clenched at all.

He was just pooped out (no pun intended there, though I wish he literally could be LOL)

We have a family gathering on Saturday for Ezra. He's home now from basic training for a month then he goes off to Korea for who knows how long.

So we are bringing Max out there to see everyone and maybe play some basketball with Jeremiah :o)

Max is getting his new wheelchair in about 4 weeks. I set up an appt to have to finished with his seating in Oct. There's another long day for us down at Gillette.

So that's about it for now. Keep thinking about school starting soon and did get some things for Spencer for the start of it Ugh.

I'll update next week with pics from the family party

Lisa

Tuesday, August 1, 2006 11:06 PM CDT

Good Evening,

Yes it's 11:00 in the evening on a Tues. and I'm updating.

I have to tell you cuz I had a really nice day for being a weekday LOL.

First it started with Max's horse riding today. Yeah know I've been getting kinda bored with taking him cuz it seems I haven't really seen much improvement with him so I talked with him about it and asked him to do his best in showing me something, head control, smiling, arms/legs moving.

Well, Max gave me something. He gave me a smile when I was riding with him and Shari and Joe played ball with him while on PT Crusier (sp?) (the horses name).

She had a toddler ball and bat and Joe helped Max hold the bat and Shari threw the ball after she made sure Max was looking at her and when he was she threw it and Max and Joe hit it and she caught it. He had this smile on his face that lasted for quite some time. I saw from the side and from a mirror that we had from one of those toddler toys. He kept this smile and it WAS NOT A SEIZURE SMILE. You know I can tell them by now from the real thing to the seizure cuz I've seen enough of them (seizure smiles)

Then later Shari did some stretches with Max and had him laying on his back but his legs were bent and over to the side. She told him to move his legs and he did move the one. The whole leg. She asked him again and sure enough he moved it again. As if he was uncomfortable and needed to move it to get comfortable. Of course he didn't move it to a different position but he tried. Twice in a row.

He also did alot of talking while she was stretching him and she had mentioned that when she would put Max's arms over his head he would bring them down.

She said that alot of kids would just leave them there. So whether purposeful or not at least he had the ability to bring them down, which I guess I never thought of. He would bring his arms down every time when she placed them up over his head. Cuz he is kinda tight when his arms are over his head so he may feel uncomfortable and would bring his arms back down.

Ok, so off to work I go to hurry up cuz our neighbor wanted to have this block party that I guess is a nation wide thing and we bring food and something to grill.

Ok, seems like it may be a flop cuz of the weather (rain) and ya know, we've talked to the neighbors maybe one on one or a few together but the whole gang at once.........but it turned out to be really fun. There was a couple who came whose child hangs with one of the neighbors kids that live a few blocks away that we met who are really nice.

Spencer now hasn't really talked to our neighbors girls since they were younger. He came over and was laughing away with them and couple of the other girls that are near by neighbors. He even went with them to watch one of the girls play soccer.

He's still gone as I write this. AND it's raining outside. I hope their having fun. Suppose I should check huh? It's raining hard now.

Ok, So real quick also. My neice from my side of the family got married last Sat. and it was really, really fun. I saw my cousins and spouses who I haven't seen in a long time and my Aunt and Uncle.

It was fun to relive some old days with them that I don't get to do cuz I never see them. I mean I can talk about it with Jim and his family but actually talk about it with the people I did it with.........well, they know what I'm talking about so it's more fun of course.

Well, I suppose I should go see what's up with Spencer. It's raining HARD. Needed though, I'm sick of trying to keep my plants healthy with water them.

Take care and lets hope we see more smiles from Max cuz it sure made my day and if we could see more of them I think it would make all those decisions we made so more worth while knowing he can enjoy his life as is (if that doesn't sound bad but I think you understand what I'm saying).

Lisa

Thursday, July 27, 2006 8:47 AM CDT

WHEW, well we made it through the dentist appt. The dentist said Max did very well and mom did even better LOL.

Max had two capped teeth from when he was 2 years old and one was having his new tooth growing over it so the dentist pulled that one and the other one was loose too so he pulled that.

I hate dentists to start with but when it's my son being worked on and having teeth pulled I almost had to leave but did stay and Max did very well. He flinched alittle on the one but it came out real quick.

When he was cleaning his teeth, Max lifted his arms up some but when he got used to the noise and what was being done he relaxed so basically he was being just like the (most) of us who hate dentists. He'd tense up but realize it's not that bad and relaxed.

I'm very proud of him for not crying or getting all upset like I almost was LOL.

Well, more hot weather coming this weekend so I guess we won't be taking Max out and about yet.

He's gained a few more pounds and has grown taller since May.

Oh they also did one of those xrays of his teeth that goes all around his head and gets like a full xray of his teeth together.

But this table he had to lay on had a small (very small) narrow board for his head to lay on and I said his head won't stay on that and he could have a seizure that would probably pull his whole body off the table.

So they asked if they could tape his head to this narrow board. Well, what could I say. So, I let them. Max just laid there like "what the heck".

Between holding his head for the dentist and using these clamps to open his mouth and now the tape around his fore head, then blood from his teeth pulled, his whole face was red. Poor Max looked like he had gotten in a fight with someone.

He's quite the trooper I have to say.

Well, now I can relax for 6 months til the next dentist appt. and continue with my week LOL

If you missed my last update you can go back to history and look at it. I mentioned about Jim moving to a different school this fall.

Thanks for your thoughts and prayers for Max at his appt. They sure helped.

Lisa

Tuesday, July 25, 2006 11:47 AM CDT

Hello,

Just a quick note.

It's been to hot to take Max out anywhere.

Our weekends have been busy and we even missed one of our doings cuz we got stuck out on the lake with our boat breaking down again and it was getting late by the time we got in shore.

Then I got sick on Sunday like the stomach flu or something and it's still bothering me so I cancelled Max horse riding today cuz he has 2 appts tomorrow so I wanted to lay low to make sure I'm feeling better.

Which I would like to ask that you keep Max in your thoughts cuz one of his appts is the Dentist and I hate seeing him go through these appts with the dentist cuz I don't know if Max really understands what's going on. And they have to force his mouth open kinda.

I mean so far he's done pretty well but I'm afraid one of these times he's really going to fight it and cry.

I also wanted to say that it's a for sure thing that Jim is being moved to a different school (within the Minnetonka dist.)

He's going to one of the middle schools cuz they can't find anyone qualified to be the head guy and they said Jim is what they are looking for.

So it's a compliment to Jim but Jim really doesn't want to move cuz he just loves the elementary kids and the staff at Clear Springs.

They've also been with us, prayed for us, helped us out to this day since Max's accident. They've been such a wonderful support to us all........ok, the tears are starting to come when I think back on how much they've showed their love and support to Jim and Max, Spencer and me. They really are just like family to Jim.

But we are trying to look at this as a postive move. Trying is the key word here LOL.

So, I would like to say to the Clear Springs Staff and kids

Thank you sooo much for all you have done for us and keep doing for us to help Max in every way possible being thoughts, prayers, guestbook entries showing your support, monetary for horse riding.

A night doesn't go by that I don't thank the Lord for such wonderful friends that we have.

I hope you will please keep in touch with us some how be it through Max site and or Jim stopping in there to say HI to everyone and letting us know how all of you are doing there (Jim's very concerned about someone taking his place that will care for you all very well) So, I'm sure he'll be stopping in :o) (The pressures on for his replacement, but I know you'll welcome them with open arms as you have Jim).

Well, I need to go and get Spencer his hair trimmed. My neice is getting married this weekend and we need wedding clothes and hair trims, oh a gift to would be nice to get them. ( so much for laying low ).

Stay cool, and I'll let you know how Max did with his Dentist appt. I'm scared. Probably more so then he will be LOL.

He's been doing well other wise they tell me. I miss him so I'm excited to see him cuz it's been a few days.

Thanks for keeping him in your thoughts and prayers,
Lisa

Sunday, July 16, 2006 10:36 AM CDT

Good Morning,

Well once again time is flying by. I was thinking of all these things I was going to write this time around but now have seemed to forgot. LOL

Last Sunday we had Max home for the day. We lounged out in the yard for awhile and talked with Gramma Joanne on the phone and watched our cats play in the yard. They were acting weird(er) then usual so it was fun to watch them.

Then we came inside and had lunch and Max ate very well for me. Usually when home he doesn't eat so good cuz he's to busy looking around. But he even opened his mouth for me without me helping him some times.

Then Max watched Spencer play a video game in their bedroom.

Then back outside on the deck for the rest of the afternoon. I have this chair I bought at a garage sale a year or so ago and Max sits in it really well. I have some pics I'll post.

He didn't sleep at all while home. I really think he sleeps more at Sugar Lake cuz what else do you do I guess. He really likes getting out and about.

Horse back riding went really well. Max showed us a pleasant look when he got on and gave us what we thought was a smile that stayed for quick some time.

He did very good eye looking when we told him to look at other people and things.

He got tired pretty quick though cuz it's been a month since last riding.

I was told by a nurse at Sugar Lake that her and another nurse realized at the end of their evening shift that Max didn't have any seizures but one small one. And she said that Max was hanging with them the whole time. And he usually has them when eating supper but didn't have any before, during or after.

So that was pretty exciting to hear. But of course when I was there he was having them. Maybe it'll be a slow change for the better. Just have to wait and see if they (seizures) start to go away.

Spencer and I went to the Basilica church in Minneapolis on Thurs. He's always wanted to go inside since Max's accident cuz we drove by there all the time so 6 years later I finally got him there LOL.

Awesome looking church. Just beautiful on the inside. There's something about those older churches that just when walking in gives you this peaceful feeling. I could have just sat there for a while enjoying this calming, peaceful feeling leaving the craziness of living outside (and the heat too cuz it was hot that day LOL).

Then Spencer and I went to the Art center and garden. That was ok. I guess I'm not an arty person and Spencer sure isn't either LOL. Some things were neat but other things I just didn't get much less wondering why they call some of the stuff ART. I think I have some of this ART laying in my house or in our garage LOL.

And of course as usual when leaving the parking ramp I go the wrong way and we get lost and end up at Lake Calhoun (sp?). I told Spencer we were going on an adventure and we did have one. But I won't explain the whole day and all that went goofy.

Kinda fun getting lost cuz we saw things that we hadn't in a long time or Spencer had seen at all. I told Spencer some things that we passed that I did when I was younger. (gosh never thought I would use "I" and "younger" in the same sentence) (things like were I went to Modeling school and stuff like that)

We had a good day together just hanging out.

Well, I think I'll work on posting some new pics. It's been awhile.

Stay cool. I see it's still going to be hot for awhile.
Lisa

Wednesday, July 5, 2006 11:07 AM CDT

Sorry I haven't updated for so long.

I hope everyone had a nice Fourth of July.

We're going to take Max out on a nature hike today. We didn't get a chance to do anything with over the weekend. Jim has off on vacation this week but I still had to work and I also had picked up an extra job over the weekend last week.

Sugar Lake had a little 4th party for the kids with shirts they had bought with the kids intials on their sleeves and cupcakes, sparklers and then grilled out side. So when I called out there Max was pooped out and sleeping.

Last week we had Max's new wheel chair assesment done. So in a few months he'll be getting a new chair.

I'll have to post new pics at another time. I have to run some errands before we go get Max.

Seems that things have been so out of routine around here with vacations and the holiday that I just can't get my head straight on what I should be doing and when. Then before you know it summer will be over and school will start again.

Have a good rest of the week,
LIsa

Saturday, June 24, 2006 10:00 AM CDT

Hello,

Well, here it is Saturday already and our days off from work are almost over. The week went by fast and I tried so hard to think about the time of day and really enjoy knowing that right now I would be here working, cleaning this and that LOL.

So let me start with a week ago last Friday after I got done doing my last jobs.

I couldn't get done fast enough and when I did I was just crabby LOL. Don't know why but it faded pretty fast. Carrie and Scott and Jesi were over and we had a fish fry and then all of a sudden this stray cat came running in our garage.

I of course had to feed him some fish and the cat is still here today. But, I'm questioning as to if we really should keep it cuz it seems to be using under the deck his toilet and it's smelling bad LOL.

Mon, Tues we just hung around the house getting some things done.

Wed we took Max out to Grandma Joannes campsite. We were going to take Max out for a boat ride (Jim had brought the boat out there on Howard Lake).

We let Max eat his lunch and then Spencer and I and Jim went for a boat ride a little bit and then went back to get Max.

Well, Max didn't seem to want to go. Was being stiff and not sitting in his chair well. He seemed to be comfortable laying around in the fresh air and even had taken a snooze for awhile.

So Jim and Spencer took the boat back to the boat launch to load it up and the boat quite on them in the middle of the lake.

My first thought was good thing we didn't take Max out there cuz we were going to take him to the other end of the lake where the water was calmer. And of course there was no one else out on the water being a weekday. We would have been so stuck out there with Max just sweating away.

Jim and Spencer had to wait for the boat to float to show and then Jim walked the boat to the launch about 200 yards away.

Max must've had some kind of insight that the boat was going to quite on us so he made sure he made his point that he didn't want to go for a ride and kept stiff on us and not sit well for us.

Thurs. Spencer, Jim and I decided to go to the Water Park of America instead of going to Talyors Falls. Ya know if we went to Talyor Falls we would have for sure had Rain on Thrus and Fri. cuz we would have been camping and trying to play out doors in the water. Happens everytime. LOL

So, Spencer said lets play it safe and go to the hotel and indoor water park.

That was pretty fun and of course Thurs and Fri were very nice days while we played indoors.

I have pictures of Spencer doing this boogie board thing there. Pretty wild. I have video too but don't think I can put it on the old caringbridge and if I can I don't know how anyways.

So, we really didn't do a whole lot. Gee for not doing much the week sure went by fast. I realized though I need to keep my job cuz it's a good exercising job with all the walking I do. I've just been sitting around doing not much of anything and feeling sluggish LOL. Need to get back into a routine.

I have tons of pics so I'll put some up now and then I'll have some more later.

Looks like a nice weekend so I think I'll drag Spencer for a bike ride after I'm done here. FEEL THE NEED FOR SPEED (outside) (since our boat broke and we can't go out in it LOL)

Have a beautiful weekend,
Lisa

Wednesday, June 14, 2006 9:43 AM CDT

Good Morning,

Thought I'd do a quick update. Next week Jim and I have off work. We don't plan on really going anywhere. Just doing some things locally. So, I would like to get Max out and about also at one of our outings. Just have to figure out which one would shoot him best and when.

Max has been doing pretty well I guess. Still has those weird seizures from time to time. OK, yesterday he had like 3 of them on the way home from a Dr.'s appt. He had one at this appt where even his legs were just a kicking away. That was weird. It was like he was screaming and running at the same time.

His Dr.s appt was with his ortho Dr. We had his TLSO readjusted again so we'll see how that works. He was getting upset on the way to this appt with this brace on. But, the brace guy said that the redness wasn't there so it's not really that bad (if the redness lasted longer then 1/2 that would be really not good).

So it really makes us think that Max just doesn't like this brace on.

Also after xrays with the brace on the Dr. said that Max's spine curve hasn't gotten worse but not better either (every 6 months is the same report to us). We found this....well good I guess being that Max doesn't wear that brace often and especially this newest one cuz he gets so upset with it on. Makes you wonder if this brace really matters to have it on or not.

The Dr sure noticed Max's getting bigger. And not just height. He grew about an inch in 3 months but he also gained like 5lbs. He does look a little meater now and you can see it in his legs and arms for sure. He's got a pretty big belly (LOL) and his face is fuller.

I asked his Peds Dr. if we can discontinue his night time tube feeding that he gets every other night. He gets more tube fed in the mornings cuz he's so sleepy and hasn't been sleeping well at night so in the am's he won't wake up for them.

Though I did find Max to be alot more sensitive to touch. He was sleeping on the way to his appt yesterday and I just reached back to touch his hand and he jumped and woke up.

He also seems to be having lots more reflux going on. Kinda wondering if we should check into that again though it hasn't been that long since we last did.

Maybe this growning spirt is changing him. He sure seems to be acting differently in some ways. I mean we've talked about Max being more alert in the pass but this time around he's not only more alert he's more sensitive and lets you know it (brace on, touching him). Wish it was for the better though and made him smile or laugh. He seems to cringe with these extra things.

I would like to thank you guys for writting in the guestbook some comforting thoughts and nice entries. We apprecitate them. I didn't mean to get into my Still icky thoughts that I have about all this and I know I should let them go but, they never will and with Max being out at Sugar Lake, there's always new things that make me feel terrible about all this that has happened to him.

I try to give it all to GOD but, you know, I'm a mom. It's not easy to just let things go. I just have to redirect my thoughts or go SEE MAX. And give him tons of hugs and kisses.

Well, that's about it for now. I have to get Spencer into the Dr.s tomorrow (he does have to go there too once in awhile LOL) for his allergies. We've put it off long enough now and there not going away.

I'll update in a week after we go play some next week to let you know what we did.

Take care,
Lisa

Monday, June 5, 2006 9:31 AM CDT

Hello,

Well, you sure can tell school is out around here. I seem to not beable to get up before 9am. I hate that cuz my day flies by faster but I love to sleep (LOL) and I'm so awake at night when I get home from work.

Speaking of sleeping. Max seems to be like me. He's been having a hard time sleeping and having to have his Med that helps him to sleep.

I did talk to him about it last Friday saying he had to stop his posturing and relax and go to sleep at night so he could go with us on Saturday to play.

Well I guess he did go to sleep on Friday night with out his med to help him. I was really surprised being he has had it for quite a few days in a row and I had talked to him about it just that day.

So we picked him up on Saturday to take him out to Howard Lake cuz his Grandma (Joanne) and Grandpa (Ralph) have bought a fifth Wheel at the Campground out in Howard Lake to hang out at during the summer days.

It's super nice and we have pics I just have to get them in the computer.

Max seemed to have a really good time laying around in the fresh air (and with no bugs to bug him right now).

I wanted to take him down to the lake but there were alot of dead fish on the shoreline and the water was pretty gross looking. But, I realized the reason for no flies up at the campground was cuz they were all hanging out on the dead fish LOL.

But that night Max needed his sleeping med again. I figured that going out would either over stimulate him or poop him out. He sleeps so in the morning and I figure then he would stay awake once he woke up and take no nap and then come bed time he's all worked up.

He also gets alittle more stiff in his arms from time to time but when I ask him to relax and bend his arms he does for me (the right one better then the left though. Harder for him to bend that right away).

He has a different sounding seizure that we don't like. He always had this kinda laughing one but now his pitch is higher on it, more like screaming and it's really loud.

So Max is having some changes that really aren't for the better that we care about but we have to realize that Max will change when growing. He's been so stable with his seizures and posturing that when these show up again in different forms or the posturing returns at night, it really upsets us.

We just have to see where the changes takes us (him). We do know he still talks to us alot and his looking at things when we ask he will. He did really well horse riding last Tues. I rode with him agian so Shari could play with his vision with the cards and stuff animals.

Spencer has some nasty allergies going on for a week now. I need to get him to the Dr. and get the good stuff to help him through this I guess.

I also have to start thinking of some things to keep him off this computer. Today I'm making him go biking riding with me and maybe when we get home I'll show him how to do laundry LOL. Knows how to do the dishwasher so he can help with that. I know he's so excited about all that. LOL. I do think we'll have some day adventures I would like to do with him. Just a matter of Mom getting motivated to do it cuz I don't have the summer off from work so........

Well, I'll work on those pics here later. I think I better get Spencer into the Dr's.

Oh I also have to tell you that Grandpa Jerry is feeling better other then his weakness. He's having a hard time getting his strength back. I know it's hard to do that once it's been wipped out for so long. But the dialysis he's doing now (out patient) is helping much better then doing it at home. So the prayers you have said for him have helped him very much and we would appreciate it if you could keep him in your prayers still for his strength to return so he can enjoy these beautiful summer days we are having right now.

Thank you all so much for your support. Still very much needed cuz I know we still have our down times when it comes to Max and all that he's gone through. Just the other day I woke up thinking (just out of the blue) his drowning and had visions of him in the water and thinking how he actually went through (experienced) death and came back. Something not many people experience and it drove me nuts why this just popped in my head after waking up. So, I made myself get up and get going so I wouldn't get all bummed and depressed (again).

I don't talke much about my feelings anymore. I try to be upbeat as much as possible but there are still days I do break down and just cry. Ok, so I'll end here cuz I can feel the tears coming on. Those tears can come on so easily still

Take care,

Lisa

Wednesday, May 24, 2006 7:18 AM CDT

Good Morning,

Boy talking about jumping right into summer (heat). Seems we did this last year too. We don't get a spring in at all.

So I had Max outside on Monday to get some fresh air but even with his sunglasses on, he closes his eye's. And he was kinda crabby. He had reflux so bad cuz he had just ate. He also had a big seizure before eating that lasted long enough for the nurses to almost give him that valuim. But he had stopped.

Once I brought him back inside his eye's were open and he talked with me some.

Yesterday at horse riding he was sleeping and he almost woke up when I told him to cuz we were ready to ride. But he went back to sleep and I couldn't wake him up for nothing.

Then I had him smell some aroma therapy oils (trying to wake him up) and his lips would move and he'd raise his arms up, make a face as if to say "PU what's that smell" but he wouldn't wake up.

Then Shari started to talk with him and he started to wake up and she massaged his hands and then he woke up.

Then she gave him a foot massage and she must've hit a tender spot cuz Max (now I don't know if he started to yawn or he went into a yawn but) yawned and it sounded just like he said "NO" while in the middle of his yawn. We sure got a kick out of that.

He was moving his legs around trying to get away from the foot massage when she rubbed a little to hard. He seems very much more sensitive to touch and tickles.

But I did lower his pump so he's able to show us too when he's being bothered by moving/pulling away (head, legs).

He did pretty good horse riding too being it's been a couple weeks. He was very loose. Didn't get stiff right away when getting on the horse.

He gave us some pleasant smiles. He did good eye looking when Shari asked him (I've been riding with him the last 1/2 while Shari shows him cards and we go look for the stuffed animals that are on the cards).

He really looks at Shari when she talks with him. He ate pretty good for lunch.

But he just hates that TLSO. He was sticking his stomach out again and he wasn't even it for very long. I took the front half off and he was better.

Jim went out and saw him last night and Jim said Max seemed excited to see him. Had that look on his face that we can tell he's happy.

So, we'll have Max home for one of these days this weekend. Looks like it's going to be hot so it's fustrating cuz then it's miserable for him outside and inside cuz we don't have air in our house. Mayeb the wind will be on the cool side. Oh well. We'll survive I guess. Heck look what Max has survived already right. What's a little heat.

Enjoy the long weekend,
Lisa

Monday, May 22, 2006 7:48 AM CDT

Good Morning. Looks like a really nice sunny day finally. Of course it has to be on a Monday and not on the weekend like I wished it would have been.

I don't really have anything to update on. I didn't get out to see Max but one time last week and he was sound asleep when I got there.

I talked to him and wiggled him around but he just grunted at me when I tried to wake him up LOL. So I figured he really wanted to sleep and for me to leave him alone to do so.

I looked at my calander and the next couple weeks here seem to be normal again with no pressing appointments to go to so I can get back on schedule to do the usual things I do and get out to see Max more for fun times instead of Dr's appt.

He'll go horse riding tomorrow so excited about that to see how he reacts to that being it's been two weeks

Grandpa Ralph had his 85th birthday party last Saturday. It was nice to see some people that we hadn't seen in quite awhile. We didn't bring Spencer cuz he was asked to spend the night at a friends house and of course this wasn't planned until the last minute and so that didn't give me time to plan for Max to go and have his feeding schedule turned around and stuff like that.

I talked with Grandpa Jerry yesterday and he sounds like he's doing much better and maybe going home today some time.

He has some work to do to get his strength back up again but he sounds very determined to do so.

Thank you for keeping him and Karen in your prayers.

Well, that would be it for today. I'll let you know how horse riding goes. I see rain for the next couple days again so I should see about getting Max outside today. I think it's time for new pictures too. Oh we have some of Spencer with Jim and I. I'll have to get them up to show you guys how tall he's getting. His shoe size has passed up his age (size 12 on a 11 year old). Guess he needs the long feet to hold his tall body up LOL.

Enjoy the day,
Lisa

Saturday, May 13, 2006 7:49 AM CDT

My Gosh, here it is Saturday morning and I get up at 7:30 am.

So I thought I would update real quick.

I guess I woke up so early cuz Jim got up his usual time (5 am) to go fishing with some friends. So with him gone it feels like a weekday LOL.

I have to work today some time anyways. Jesi (our neice) celebrated her "Sweet 16" birthday yesterday with a party and band at the elementary school youth area place thingy. Never been there before but it was nice.

Laurie and John, Amber and Gracie got back yesterday from their trip seeing Ezra. Guess he's doing well and they were very excited seeing him and spending time with him. They have some great pics I'll have to get and show you of Gracie and Ez. Ez is staying where he is for 12 weeks I think she said to finish schooling there and then maybe in the next week he'll find out where they are going to send him next that will be his base station. He's hoping in the states somewhere and not over seas (as of course we all are hoping for).

Grandpa Jerry is in the hospital again and not feeling well at all. He's so tired and tired of not ever feeling good enough to do anything. He's always such a busy body and it's getting harder for him to do the things he loves to do.
So if you could take a few minutes to say a prayer for Jerry and Karen I'd appreciate it alot. I know some decisions have to be made such as his dialysis and how he wants to handle it cuz doing it home makes him feel miserable.

Max had his pump refilled yesterday and we went down on it some again to see how that works for him. I know that his seizures and getting sick last week was making him upset and stiff at times. Like I told the nurse yesterday, that that is one way Max shows that something is not feeling right with him and she agreed that they are finding out that multiseizures or big ones do make the kids tone go up. I kinda laugh thinking to myself that I probably could have told them that a long time ago. LOL.

We also had his TLSO adjusted while there (kinda last minute thing). We didn't even make it from Maple Lake to Buffalo yesterday without having to stop at home and take it off him cuz it hurt him so bad and he was just a snorting and grunting and close to just crying. Now we have to take him for a car ride and see how it works for him. Didn't seem to bother him any other time other then in the wheelchair while riding in the car.

Other then that he's feeling lots better the he was last week. He looks way better too. He slept most of yesterday while I was with him til on our way home. Funny how I was telling the nurse that once he fell asleep he'll stay that way til we start to head back and sure enough he did what I said he'd do. Wide awake on our way home. Do I Know my boy or what. LOL

We'll have to go out there Sunday for Mothers day and do something with him. Hopefully he'll be awake. I think going up on that seizure med is making him sleepy again til he gets used to it.

I had gone out there at like 2pm on Wed to give the nurses a plant for Nurses week and Max was awake then so maybe I need to get out there later. I give him big bear hugs but he doesn't seem to care for them to much LOL. Oh well, get used to it Max cuz I just love you so much I can't help it. And all the kisses too.

Have you guys been following the two twins that got seperated yesterday. I have and been keeping them in my prayers also (my prayer list is sooo long). It's so hard to see parents have to go through so much with their percious little babies. I know, been there done that. So, my heart goes out to them and I'm so glad to read that all went well.

Also want to say "HAPPY MOTHERS DAY" to all you mom's out there. I hope your kids give you a big bear hug on Sunday. Feeling their arms around you is a way better gift then any (material) gift they could give you.

Take care and thanks again for the prayers for Jerry and Karen and Maxwell,
Lisa, Jim, Spencer, Maxwell

Monday, May 8, 2006 9:11 AM CDT

Good Morning again,

Just wanted to let you know that Max got to leave the hosp yesterday cuz he was totally off the oxygen and doing much better.

He has his to take antibiotics for the full 10 days just incase there was some bug in him.

And Sugar Lake is to do his respitory therapy when he needs it. (that pounding on his chest and back to loosen up the gunk and to get him to cough it out)

I have to say that I feel really guilty for sounding like the hosp was terrible but they weren't as bad as I may have made it sound. Just a few things that bothered me.

The nurses were all very very nice. The one he had yesterday when we picked him up was very interested in Max and what happened and what he went through.

The others were just as friendly and nice and they all did do as we asked (in a timely manner I guess being they did have other patients).

Like I think I had said before, the don't get children that often there for stays (one nurse and I had talked about that cuz Max had such huge underwear (diaper) on) Most kids if really sick would go to a childrens hosp such as Max would have if it wasn't just for a couple days of staying there.

Well, anyways. Max is doing well when I called Sugar Lake yesterday and I had asked them to go ahead with his normal routine there if he can tolerate it.

My week looks rather uneventful finally with only 2 appts to go to so I'm looking forward to just relaxing around the house and maybe doing some house work........maybe I said LOL.

Max doesn't have horse riding tomorrow cuz they have an appt to attend to. So maybe I'll take him outside, if it's nice out, for a stroll somewhere.

Thanks for the prayers for Max,
Lisa, Jim, Spencer, Maxwell

Sunday, May 7, 2006 8:51 AM CDT

Good Morning,

Hope everyone is enjoying this wonderful sunny weather that we finally have gotten this weekend.

You'd think this would be a good chance to get Max out and about too but, the poor little guy finally came down with a nasty cold/fever. Like I said he's not been really sick for like 2 years (guess I didn't knock on wood hard enough when I say that LOL).

It's started on Thurs and Max had to have his baclofen pump refill on Friday but when I heard that he'd been on oxygen for all day and night, I knew his pump Dr. would touch him with a 10 foot needle cuz she doesn't want to cause any complications with him being sick which is understandable.

So, I called his peds Dr. and she said she wanted to see him cuz this was so out of the ordinary for Max and did chest xray's and he doesn't have pnemonia (sp?).

But she did decide to put him in our local hosp. for the night and if not better by morning send him to Childrens. Well, the on call Dr. had him stay there one more night so he's still there.

They also gave him IV antibiotics both days plus the nebs and the chest pounding thing that they do to loose up the gunk in his lungs.

Max coughs really well so that helps him alot.

On Friday he was so vocal with me. I had left to go get him some things and came back and he was sleeping. When I walked in and Said "Hey Max, it's me mommy. I'm back" He opened his eyes right away and started his little moaning talk. Thought that was neat to his responding to me like that.

I also asked Max if his tummy was hungry cuz it was getting late and he hadn't eaten. So I said look at me if your tummy is hungry and he didn't and then I asked him to look at me if his tummy wasn't hungry and he didn't look at me. But, he's still moaning so I asked him to look at me if his hand hurt (they had just put the IV in) and sure enough he looked right at me. So that was nice to see him so me that he can let me know what's bothering him.

So, well see what happens today. If's not feeling better or they think he should stay, we'll demand that he goes to childrens. The local hosp. isn't that great for kids like him and we've had to kinda push for things to get done.

I also wanted to let you know that Ezra has finished boot camp and John and Laurie, Amber and Gracie are in South Carolina to his (last friday) gradtuation. I bet they were so excited to see him.

And Jim and I had our 15th anniversary last Thurs. The weather was exactly the same as the day of our wedding. Cold, wet and gluumy LOL. So, Jim and I spent our weekend together in the hosp with Max LOL. Great anniversary huh? That's ok though. Have children things come up like that.

I guess at Sugar Lake everyone has had some kind of illness Kids and nurses so, the days of Max not getting sick may be over. There's more traffic coming and going now at Sugar Lake so those bugs are sneaking in also. I can't keep Max in a germ free bubble forever.

I'll let you know if Max can go back to his lake home or not after today. I think he could cuz I know the nurses can do (do I dare say) better at keeping his lungs clear and moving him more and just giving him more one on one care. Don't get me wrong. I'm greatful for what the hosp is doing and their doing well with what they have to but, I (my personal opinion and from somethings I saw) just wasn't up to my standards but then maybe that's cuz he's my boy and nothing is going to be up to my standards LOL. And I heard from 4 people (2 of them in one day) that the hosp wasn't well liked by them and they kinda told me their stories. So that put my mind in a bad place sorry to say (dear Lord forgive me).

It's just that Max had the IV antibiotics that was letting me have him stay there other wise I would have said he could go back cuz they could care for him well.

Lisa

Wednesday, May 3, 2006 7:25 AM CDT

Good Morning,

Sorry about not updating sooner after Max's allergy appt. Seems I'm running from sun up til sun down these last few weeks (again).

But we did make it to that appt which made me a wreck getting there on 94. Seems all the trucks take this road to the cities and when I'm not sure were I'm going makes it worse.

So when the Dr. walked in the room I was just a babbling away about getting there and Max and his seizures were acting up really bad (one he'd just woke up and the other cuz of the med change).

The Dr. laid his hands on my shoulder and then introduced himself to Max and me. I apologized for my hyperness and he said that's ok I understand.

He was really nice and asked alot of questions about Max. I got the impression that he may not have seen a near drowned child before. He asked if he was borned that way and when I told him no and that he had a drowning accident he was kinda taken aback.

Of course he loved his hair he said and Max just had a fresh hair cut from the nurse at Sugar Lake.

He said Max does have allergies and that we could test to find out what kind but he said so what if it is Maple trees or oak not like we can escape them. He also said he really doesn't see it necessary to put Max through all that testing cuz it's (well some) kinda painful with the needle pricks, or could do blood test (which Max is used to getting blood drawn I said).

Then there would be all these shots if we did want him to get used to whatever it is he is allergic to.

So, we are to just give him this generic Clariton and those eye drops and see what happens. We can have him take them all summer or if we see the pollen count is down we can stop and start when we see fit.

So now that's done and over on to the next issues. Such as his brace bothering him when going on long trips as such. I was going to stop at the new Cobella's but missed it (can't figure out how I missed such a huge building but I did). But, Max was starting to get sore from his brace so good thing we didn't stop.

I have to call his neuro cuz his seizures are getting pretty bad as far as I'm concerned and the nurses say they have noticed a difference in them re: more and some of the bigger ones showing their ugly face.

I have to find out what our plan was that we talked about. I think we were going to try another med and so I'll ask if we can start the one while weaning from the other or maybe if this one we are weaning him from worked (obviously) so well maybe keep him on it before we get to far down on the weaning.

I also want his toenails checked out (which is at the bottom of my list if he's not being bothered by them).

But, we had a good horse riding day yesterday which surprised me cuz of his sleepiness and seizures.

Right off the bat when Max started to ride with his head bobbing away he gave us a huge smile. It actually lasted for a while too.

Then after one of Max's big seizures he had a smile again. And he wasn't in a seizure anymore.

There was some other times he gave us some really nice quick smiles and pleasant looks on his face.

I also got to ride with him yesterday and I did the last time too while Shari had Max look at cards of animals and the we'd go find them set out around the arena. Shari loves to watch Max look at the cards when she asks and then look down at the her and the stuffed animals. He's very good at looking at things when you ask him to so you know he's understanding you.

I'm actually liking this horse riding myself not that I'm in control but, just being on a horse and getting used to it is fun. I may have to drag Spencer with me this summer to go one of those horse riding places with trails. LOL. Yeah, we'll see what he (Spencer) thinks of that.

I think that's all I was going to say. Thought I had more to add to this but.......

I forgot I have some pics of Jim on the horse with Max that I will work on putting up on the site.

So I will go do that now.

Enjoy the sun we finally are getting, who knows how long it will stay. It sure feels good and makes one more energized to do something, anything but sleep LOL.

Lisa

Tuesday, April 25, 2006 8:15 AM CDT

Good Morning,

I'm actually having a slow morning today (well ok, I had one kinda yesterday but those don't count really (on Mons.) after the weekend cuz that's when I balance the check book and make all my appts that may be needed etc LOL).

Max doesn't have horse riding cuz his lead walker is on vacation this week and she couldn't find another to take her place. And Spencer woke up not feeling well so I called him in sick.

I thought Hey,I could go back to bed.... so what the heck em I doing up LOL.

Well, I'm going out to see Max today anyways and Last friday he was awake for me so I could chat with him and he chatted back and looked at me when he talked with me. I finally realized (duh, like his vision teacher had always told me) that Max see's better from the sides and then slowly bring (me) things to the front of his face. It's hard for him to focus right away when things are brought right to the front of his face though I've seen him look at books really well when I would show him.

Anyways, Max has his allergy appt this Thurs so I thought I would ask of you to keep him in your thoughts and prayers that they find what is bothering him so that they can fix it with the proper meds or if it's something we can avoid (hopefully that wouldn't be spring, summer and fall).

But, now that we are seeing a new Dr. there's all this paper work to fill out (once again). Some of the questions are kinda funny to me cuz this is about Max and I can't answer them cuz I don't know and he doesn't show any signs of trouble in these area's but doesn't necessarily mean he doesn't have trouble. But, it does make it easier filling out the paper work LOL (sick as that may sound).

I've been looking at new pics to put up just haven't found any that I care for at this time. Need to take some more new ones maybe.

I'll let you know how the appt goes and what they find (or not find)

Thanks for keeping Max in your prayers for this appt
Lisa

Monday, April 17, 2006 10:55 AM CDT

Hello,

I'm sorry I haven't updated sooner and wished everyone a Happy Easter. I hope all of you had a good day. It sure turned out to be a nice day (well, I guess that depends on where your reading this from but it was nice here in Buffalo, MN)

We had Max home yesterday for Easter but the day didn't turn out like we had planned.

Max definatly does have allergies come spring. He's been outside a few times with this nice weather. I had him out one day and the nurses have taken him out a couple times. And now his eyes are beet read again like last year.

So, I'm working on getting a hold of the Dr. to have some allergy tests done so that we can see what exactly it is we are dealing with. Laurie works for the company that takes care the clinics labs and she had told me there is a test kit that would tell us what he's allergic to so, I'm pushing for that this year cuz it didn't happen last year like I would have liked it to.

So, Max slept almost all day here and as I've said before when he's here he never sleeps. He also had some dimetap for his eyes so that probably made him sleepy.

Spencer had some home work that he had to do this weekend and not to go into that long story but we ended up buying a printer that we needed to get anyways, I've been just putting it off. SO, he finally got his work done.

Max has quite a few appts coming up and some that I still have to make. I just called the guy I work for to schedule my vacation for the summer before making any more appts so I can work around those I have and those I need to make LOL. Yes I need a vacation for all the appts too so I won't make them on the days I take off even if we don't go anywhere away from home.

Max needs a new wheelchair now after 6 years. I guess that's good that they last so long and hopefully this next one will too.

We're in the process of weaning him off one of his seizure meds so this should be interesting to see if this one made a difference in his seizures or not. If not well, great then one less med to give him and maybe there's something else that may work better with the other ones he's on ( I think that is what the Dr. was going for). Guess then it wouldn't be one less if we add another. OH well.

I think his seizures are just something we'll have to deal with all the time and they, I assume, could change as he gets older as we've been seeing. It'd be nice if they changed to like..........GONE!

SO, that's my wimpy update this time around. Need to get Max's allergies under controll so he can enjoy the summer with his eye's open.

Thanks for stopping in to check on Max and how he's doing. We still appreciate everyone for keeping him in their thoughts and prayers. He's been staying so healthy that we believe all your prayers are being answered in this way.

Lisa

Friday, April 7, 2006 11:06 AM CDT

Hello,

WOW, just watched the weather channel and it looks like some really nice weather is coming. Though some rain with it but heck I don't care as long as it's warm.

But, the weekend isn't here yet. I have to clean all day (starting at 1) and into the evening tonight so just waiting for this day to go by.

Couldn't wait for yesterday to get over and so glad it is.

Max had his new TLSO fitting and it does take all day. I got up at 5:15 am (so I can drink my pot of coffee cuz I'm no way a morning person) and then picked Max up at 6:30 only to find out that I think I forgot to tell them about this appt. So we rushed Max out of his bed and he only had his meds and no breakfast.

It was funning cuz by the time he woke up, he's riding in the car. I asked him if he's wondering what the heck and where is he and where's he going.

So, poor Max had to have shots of food all day while he's up and down while they are fitting his TLSO and making changes.

Finally I had to ask her if she can hurry up some cuz I had to clean that night (3 jobs) and didn't want to be working til midnight (which I ended up doing anyways).

We (Jim came with) finally got out of there at 4:45 (we arrived at 8:15am) going home in rain and rush hour.

Max did fine with his new TLSO up until about 15 miles from our house (Sugar Lake is another 15 miles from our place) and Max was starting to get upset.

Boy if you could have seen the look he would give. It was like he was giving me the "come on mom, it hurts. Help me".

I told him to say "Owie Owie Owie" if his brace is hurting and he looked like he was going to say it. His face was all wrinkled up, arms up and about ready to cry. He also gave me his snorting talk instead of his sweet cooing.

We finally got to our house and stopped in to take it off and once we just laid him on the floor he felt much better.

So, we'll have to have it adjusted again for better fitting. It's just pushing to hard on one of his curved spine parts on his back and it makes a big red mark.

But, I was talking to my sister in law and it sounds like our whole family has been busy running from one place to the other.

Grandpa Jerry is back in the hosp. and so is our little percious grandniece, Gracie with some bug that's making her sick.

So, Jim and everyone in the family has been going out to see Grandpa and Gracie cuz they are at the same hosp.

If you could take the time to say a quick prayer for them both for a quick recovery and to get home for Easter weekend I'd appreciate it.

But, I need to get going, slept in, and have to get ready for work. Just thought I would quick update.

Enjoy the weekend coming up. Sounds like it's going to be nice and sunny for the most part.

Lisa

Wednesday, March 29, 2006 7:46 AM CST

Good Morning,

WOW the sun is finally shining. Hope the sun gives me the boost I need to feel alive again LOL. (of course some nice warm weather would help also)

Well, Spencer is back to school after a week off for spring break. He didn't do much and I couldn't think of anything to do with him. We did go bowling one day. He's hard to entertain since his toddler years.

Jim has off from work this week. We've had appts every day so far this week (so much for his sleeping in LOL)

Monday we had to have Max's TLSO adjusted and then they decided to cast him for a new one. His little tummy has gotten bigger so he's getting squished in the one he has now.

Yesterday was horse riding. Max was pretty sleepy so he didn't do his best and Max also rode on the bigger horse so the stride on this horse made Max bounce more so holding his head was alittle tougher. But, Shari used this horse so Jim could ride with Max (I have pics but will add them later).

When Max and Jim rode together, Max had this crabby look on his face almost the whole time. I think cuz it was he was riding up higher on the horses back and was sitting on a lump from the horses back/neck and the blankets. Or mayb he knew Dad was riding with and was a little nervous LOL. Jim said it felt weird like I said when I had rode that day.

We also had Max ride laying on his back and the we flipped him cross ways on the horse tummy side down. So he was hanging over the horse. He sure talked alot then. Probably got a major head rush after when we flipped him back over and on his back again (laying full length on the back of the horse). He had this happy look after getting him off his tummy hanging over the horse. I suppose I would too LOL.

Last week Max did really well with riding. He held his head up for quite a while and then it dropped just alittle and he held it there for some time. Then he had this very much happy look on his face and almost a full smile as if he was really pleased that he did hold his head up. I told him he should be proud of himself for doing so.

So that was encouraging to see him do that knowing he may be on his way here to getting better at this.

He gave that look again later right before we were done riding too.

I also saw this smile on his face the other day when I was holding him and playing with him. It was a seizure at first but that seemed to go away and the smile stayed :o)

Tomorrow we have an eye appt for Spencer. He said his right eye is blurry when looking in the distance. The boys have their fathers eyes but I also want them to have their fathers eye sight LOL. I don't want them to have to deal with glasses/contacts like I do. Pain in the butt. But, if down the road Spencer site gets worse, I suppose that laser stuff would be a good choice for him. Well I guess that's something down the road we'll have to deal with maybe.

Other then that not a whole lot more to write. Shari would like to see Max go to this SPOT rehab to see if we can some how figure out if Max can communicate (communicatoin therapist)with us through is vision or something. He's so verbal when you talk with him (his uh's) and when you ask him to look at things and he does.

I have to get a Dr's ok for this first and see if we can get a few therapy session ok'd through her and then through ins.

Well, time to get Spencer off to school. Only a couple more months to go then it's officially summer to us LOL. Oh, and being April is around the corner here I say it's officially garage saling time :o)

Enjoy the nice day,
Lisa

Monday, March 20, 2006 9:41 AM CST

Happy first day of Spring! AND HAPPY BIRTHDAY TO MAX!!!!!!

Yup Max is 9 years old today. We had a small celebration yesterday with Grandma Joanne, Grandpa Ralph, Aunt Laurie and cousin Gracie and her mom, Amber.

We usually celebrate with Max's cousin Jeremiah and Ezra (their b-days are in March also)but as I've told you Ezra joined the army (he called when his mom was here so it was nice to hear his voice. Said he's doing ok.) So, we haven't planned a party for Max and Jeremiah as of yet.

Max was awake the whole day. The last few times I went out to see him he was sleeping so, it was nice to have him awake when with us.

I was making Max some picture collages. One with all Max and me with that poem that was written for Max and I a year or so ago in the guest book. That turned out nice and I'll post a pic next time around. The other was with the rest of the family but I needed to make some smaller size pics so I couldn't finish it yet.

But I was going through ALLLL these pictures that we have taking over the years and some that I had forgotten about (before and after his accident).

It sure was nice to go down memory lane looking at the ones when Max and Spencer were little. I'll have to post some of them too some time. It also made me tired looking at them two running around and the places we went (camping and stuff) We sure did alot when they were little. It makes me glad we did so much with them before Max accident. It makes me fill good that at least Max has some wonderful memories to remember. Though there are things I wish we would have gotten to do with him that we've done with Spencer but..........

Then we found those pics of Max in the first years of his accident and that made us realize just how well he's been doing since then.

So we have lots to be gratful for. And pray and be thankful that things keep going well for him and continue to so improvements big or small.

Well, Spencer has off school this week so I got up later then usual and now the morning is almost over. There's a no win situation, like to sleep in late when I can but hate that my day flies by faster.

Lisa

Thursday, March 9, 2006 7:43 AM CST

Good Morning,

I'm just hearing on the Today show that there's an man in England, Sir Benjamin Slade, is looking for an American heir for his estate and mansion (he has no children). I'm adopted so maybe I should try for his estate LOL. He's actually doing DNA testing for an actual blood line.

Ok, so much for the dreaming now back to reality.

I put new pictures up finally.

Max went horse riding Tuesday but just didn't seem his self that day. I think he was coming down with something (and sure enough the next day the nurses said he was running a slight temp).

It was funny cuz I was saying that Max just didn't have his attitude going. His arms were stiff and I lifted them up and said "come on now Max" bend your arms." and sure enough he just bent them. I didn't have to say it but just that one time which is not the norm. Usually he does the oppisite.

He gave a few "old Maxwell" looks that was nice to see again. The grumpy look. Bottom lip sticking out.

Then while having lunch, he just wasn't in the mood to eat or didn't like the lunch (which I don't blame him cuz I tasted it and it was pretty gross. LOL I think it was canned spaghetti).

Anyways, Shari asked Max to look at me if he didn't want to eat anymore and he immediatly looked over at me. Now it looked like one of those seizure where his eye's go to the right quickly but, he came out of it so fast and when Shari asked again if he was done eating to make sure and to look at me if he was, once again he looked over at me.

Jim was out to see him last night and said Max was tracking his hand really well. Jim would hold Max's hand up in front of him and told Max to look at his hand and when Jim moved it from one side to the other Max followed watching his own hand the whole time.

Jim did this with both hands and Max just watched him move his hand from way over to one side to the other.

So it seems that Max is really understanding what we are saying and doing what we ask him to do (within his limit).

He really listens too when things are going on at Sugar Lake like the other kids when they cry out, you can tell Max is really concentrating on there sounds and can get this look of concern on his face and then when it quites down his look goes away.

Max made a small smile, Jim thinks, when the nurse walked by and tickled Max's foot. He said it was one of those quick smiles so he wasn't to sure.

I should try and see Max more in the eve's if I can cuz he seems to be more awake and aware in the eve. He's usually sleeping when I go in the daytime. He was really sleepy on Tuesday but did stay awake.

Max's birthday is coming up and It's just going to be Max and Jeremiah for the boys birthdays cuz Ez is down in boot camp. It just won't be the same without him here.

I suppose it's time to get Spencer to school. Oh, he did really well with his report card again. We are very proud of him for doing well. Just a couple subjects he really doesn't like and spelling he's getting better at so he should go up on that at the end of the year here.

Need summer to get here fast cuz being indoors is driving (at least me) nuts.

Lisa

Wednesday, March 1, 2006 8:55 AM CST

Good Morning again,

Ok, finally an update huh? Like I said I don't have to much to say being I haven't seen Max in over a week til yesterday when we went horse riding.

He did well yesterday. Laid on his tummy for some of the ride cross ways over Pete the horse. He gave me some nice pleasant looks on his face but I can never get them with a picture being I am helping with the side walking and by the time I get the camera going, the look is gone.

He did his verbalizing alot yesterday too.

When I took Max off the horse he was on his tummy so I had to grab him kina funny where he was facing out from me and I had him under his arms and hold him between his crotch so he was straight up. I thought "Hey, lets have him stand". So I placed him down on his feet and Shari held his knees so they didn't bend. Boy he's gotten really tall when up against me. It was so nice to see him standing without any contraptions strapped to him. And he held his knee's locked for awhile til they gave way and bent.

Here's some Exciting news re: Max's riding

Jim's school(staff and parents) where he works did a wonderful, wonderful, fundraiser for Max's horse riding around Valentines day. One of the teachers made a beautiful poster of pics of Max's and told alittle about horse therapy that he does (I've tried to put the poster on Max's site but can't get it there from where I had downloaded it)

Jim came home with the money that had been raised and they all pitched in $1065.00 for him to ride.

My Jaw just dropped opened (Jim had to close it for me).

We are so excited and I could wait to tell Max yesterday.

He was sleeping when I picked him up and so when I was telling Shari about Jim's school raising money for his riding I showed her the poster and she thought that was so sweet and done so well.

Then I had folded the check in half and had Max give it to her (he was still sleeping) and she took it and was talking then when she opened it her jaw dropped open. She was so shocked and gave me a big hug. She said what a wonderful blessing. Which we agree.

I let Shari keep the poster cuz she wanted to show the other parents.

Max finally woke up with some talking to and giving him some flavored water.

Jim's school and Parents of the students have been so wonderful and supportive of Max through the years that we just can't thank them enough for thinking of him and keeping him in their prayers.

Max also has been having some trouble I guess with his TLSO (his body brace to help keep his spine straight).

Apparently Max hasn't been wanting to wear it. When they put it on him, he would stick his stomach out and get all red in the face and blotchy all over his body. Then when the nurses take it off he would relax and the redness would go away.

We think this is really cool that Max is expressing his feeling of not wanting to do something.

The nurses tried to find what would be bothering him with the TLSO and really can't find anything pinching or poking him. It's tight on him but heck that's cuz he's pushing out with his tummy.

We have a pump refill this friday so I'll have them take a look at it there when we are there. I'm curious to see him to this and yet kinda hoping not cuz he does need to wear it. But in the same thought maybe he's ready to sit up straight himself and not have any help with that TLSO.


I had told you a few weeks ago about our Nephew, Ezra, going into the army. Well, he's there now and I guess so far so good for him. At the time his dad talked with him he really hadn't gotten into the boot camp yet. Still doing the what they expect from them and rules I guess.

His going away party went well. Lots of his friends there and family (friends out numbered the family LOL)

I've been thinking about him alot these last few weeks. Wondering how he's doing with this new life style.

His brother, Jeremiah, is going down to florida with friends to do some missionary work. So, lots of "keep em safe" prayers are being said these past few weeks :o)

Well, I think that's it for not having much to say LOL.

I'm axious to get feeling better and getting back to the norm (I have an appt today and jobs to clean during the day tomorrow) so I haven't had time to just go hang with Max and really need to do that cuz I miss holding him and just talking with him.

I'll work on some new pics when I get a chance here. It takes awhile and I have some new ones I have to get in the computer.

Take care, enjoy the warm weather. Hopefully it's here to stay now til spring (ok, I'm dreaming but it's a nice dream to have LOL)

Lisa

Tuesday, February 28, 2006 7:28 AM CST

Good morning,

Just a quick note that I'm going to update today or tomorrow after Max has his Horse riding today. Didn't have it last week and I've been sick all last week and still not feeling well so I haven't seen Max in over a week. Today will be the first day since I've been sick and very excited to see him.

But I do have things to tell you so hang in there with me and I'll update later on today or tomorrow.



Thanks
Lisa

Wednesday, February 15, 2006 10:18 AM CST

Hello,

I'm avoiding going outside cuz of the cold. But I do have to go out there some time to get milk before the snow comes if it comes in a pile and I'm really not wanting to go out then LOL

Having another busy week. Max had new AFO's (ankle/feet braces) made on Monday and his wheelchair adjusted for the last time on this wheelchair. Next growth spert will mean a new wheechair which is kind of exciting to pick out another one and decide what color and style.

Yesterday was horse riding and Max was some what verbal. Not as much as usual. But, Shari had card with animals on it and then little stuffed animals around the arena.

She would have Max look at the card and the we'd go find the animal. Max did good with his looking but......

Shari then surprised me with a "LETS HAVE MOM RIDE WITH YOU MAX"

Ok, I haven't been on a horse in YEARS. So, I told Max if he was ever going to panick while on the horse he best do it now when I'm up there with him.

It was weird and scary and exciting all at once. I was very tense though and Shari told me to relax and just move with the horse. I still felt like I was going to fall off. And she said to hold Max's shoulders. I said but's going to hold me!!!! Two floppy people on the horse. What was that poor horse thinking.

But Shari had a chance to see Max from ground up and we did the card/stuff animal thing and Max really listens to her. He even looked down at the stuff animals to see if that was the one that was on the card when she asked him to.

I kinda hope I can do it again. I really think I had fun so to be sure I'll try again. LOL. Oh, and of course I didn't have the camera. Next time.

Speaking of pics. I have to figure out how to get them on here with a new pic program so it maybe awhile before I get new ones up.

Also about horse riding. I have had some people donate to Max some riding sessions. I would like to thank Edna for giving Max some sessions and Sandra donated also a while ago.
I don't know if I had mentioned them before to thank them but also I wanted to let you know the wonderful thing that Jim's school is doing.

There's a teacher there that had asked Jim about Max and Jim had mentioned Max's horse riding. So this teacher made up a beautiful poster with pics of Max riding and just some other ones and the brochure of Max's riding place asking for others to help Max continue to do what he loves and is helping him with his muscle control.

It's a wonderful poster that would make you cry with what she wrote about Max. OF course I don't know how to get it from point A to b. I can't find anything that would move it to some where I can put it on the site.

But I think this is sooo sweet of them to go out of their way to make this poster and help him keep up his riding lessons. They said they would do it every Valentines day
for him.

If I could ask another favor from all of you, I would like you to send prayers to my Sister in Laws family. Laurie, John, Jeremiah, Ezra.

Ezra has joined the Army and leaves next week for boot camp. I know this is going to be hard on them to see him leave so far away and not see him for quite some time.

Ez decided this is what he wants to do. It's so hard for kids to get started out in the world after high school and college isn't easy to come by either and isn't always for everyone (I know I sure tried a few times LOL). And jobs out there are pretty crappy if you don't have an education of some sorts.

So if you could keep them in your prayers as Ez goes out on his new journey with the army, I'm sure they'd really appreciate it.

Thanks for every thing and I'll try and work on the pics thing soon here,
Lisa

Wednesday, February 8, 2006 7:45 AM CST

Good Morning,

I was going to say bare with me cuz I'm trying to type with a cat on my lap but she jumped off. Baby Belle just hangs on me every morning ALL morning. When we got her a year and half ago, it was so Moo (our other cat) would have a playmate, not me LOL.

Well, I don't have a whole lot to update on Max this time round. He had some botox shots done again on his arms. His arms/wrists are getting tight. Especially tight in his right wrist.

We had his school meeting yesterday too for what we want for his goals (they call this a triple III P). They noticed he's more vocal too and also that his seizures are more. He's still pretty flexable except those wrists so extra work to be done on them. Trying his splints again at night when he sleeps.

Max's feet have grown again so he's on his 3rd pair of AFO's (ankle/feet braces). They'll be done in a couple weeks.

We've missed 2 weeks of horse riding now so that bums me out. Shari had to put one of her horses to sleep so that was a sad day for her I'm sure. And yesterday Max had his 2 appts so we couldn't make it for that day.

Our friend down at Pulaski lake had to put his dog (14 years old) to sleep also. This is Babe the dog that we've grown to love over the 14 years too. Max and Spencer sure loved her. She loved the lake and it was like a new adventure to her every time she went down there to hunt/play. So it's sure going to be quite when we go down there with her not there barking and jumping all over us when we show up. She was such a loving dog. She would just rub against you and lay her head on your lap. The kind of dog I would love to have if we every got one (but not in the morning cuz I have the dang cat hanging all over LOL).

We also had a Wonderful Surprise this last weekend. Last week we were having one of those " What more can go wrong" week. Seems everything was breaking down on us and the bills were piling up beyond paying. Computer just gave up on us, washing machine decided it was done doing it's job, stuff like that.

Well, my wonderful, wonderful, wonderful mother in law offered to help pay some of our debt off so we can get back on track.

And when we came home that night from her place we were drop dead surprised to see a new computer sitting in our room.

Spencer walked in first and started yelling at me to come look at our computer. My first thought was "oh man, now whats wrong with it (Scott had given us his old one to use til we got a new one)" All different thoughts ran through my head.

I was like a deer with headlights in my face. I just stared at it. Had to go back outside to see if we were at the right house LOL.

We screamed for Jim to come look (nothing like making someone panick) and......well, if only someone had a camera for all of us when we walked in the room.

After thinking about who did this and we pretty much knew, the tears started to come for me.

Jim's family, Scott/Carrie, Laurie/John, Jerry/Karen, Joanne all pitched in to help buy this for us.

I was trying to think of what to write letting them know who much and how special they are to us. I've always known that Jim's family was the best of the best way before even Max's accident.

All those camping days together and family gatherings over the years have shown me how close they are as a family and that I will always have some one in my life that I can count on to be there for me through the good times and rough times. (guess I'm talking about me cuz Jim knows this already being he's their son/brother :o)

I can't thank all of you enough for all you've done for me/us. I look forward to more good times with all of you.

WE LOVE YOU GUYS VERY MUCH.

Shoot, look at the time. I have to get Spencer to school. I should have done this update later.

Thanks again,
Lisa, Jim, Spencer, Lisa

Thursday, January 26, 2006 9:54 AM CST

Good Morning,

Boy what nice weather we are having. I just love it. Sure makes the winter go by faster. Nicer too when taking Max out for his appts.

So, Max had his neuro appt and dentist appt yesterday.

It turned out better then I thought it would and some nice things to hear.

First was his Neuro appt and she is very pleased with Max and how he's doing.

We talked about how he's vocalizing more, head control is getting there, his tone is down and so we were encouraged to keep trying to turn it down, his eating orally (which I'll tell you what she said about that here soon) and his more alertness and showing us when he's upset and kinda making choices by getting stiff.

I asked her why Max's seizues are different and more and she had said that from ages 5-9 the brain matures more and that is mostly what is happening and we are seeing more electrical firing, neuro activity.

So, I had asked her if we would see changes for the better if his brain is maturing more. She said we very well could and that we have with just the new (but small) progress in Max. I then asked about his possible moving his feet and hands more, more physical movement on his own and she didn't really want to say that that would happen. That she really could be the one to say yes or no. So we take that as if it happens it will and that there could be a chance of him doing more things physically of such.

When we talked about his oral eating and having a swallow test (this is great) she basically said the same thing I was saying all along. That a one time swallow test isn't really going to show us anything (Max could have lots of seizures at that time, tired, not wanting to) so that would not be a fair test to him.

That we are doing well with how things are going in his eating and that his weight isn't down. He hasn't aspirated at all or had pneumonia (knock on wood) either in all this time.

Max has a good cough relfex and will let us know if he's in the mood to eat or not (or seizures bad/tired) so if not we just tube feed him.

She said the best test to know if Max can eat orally is us by seeing him everyday and deciding for ourselves.

We are also messing with his seizure meds to see if we can help them get better. And down the road shut the VNS off to see if that is helping at all.

The Dentist appt was interesting too. Max did very well. did choke some but recovered fine.

Jim was telling us that when Max was wanting to curl his arms up to his(max's) chest, Jim calmed him down so he relaxed his arms but holding Max's hands, Jim could feel Max just squeezing his hands tight and also his feet were just a wiggling Jim said. Now if that's not a normal response to being in a dentist chair when having your teeth messed with I don't know what is.

I asked the dentist about his choking on his back teeth when they come out and he said in all his years of dentistry with disabled kids he's only heard of one aspirating and that most kids will spit them out (such as Max has been doing) or swallow them and then let them leave the natural way LOL. He said he can very well aspirate but the % is very low. Oh just like his Neuro Dr. said about aspirating while eating orally. It's possible but it hasn't happened this far along so that's a very good sign. (again knock on wood)LOL

So we had a very uplifting day yesterday and are very excited for Max. We really have to look at all the positives for him and work off that and not the negatives.

We really have to thank the Lord for keeping Max so healthy (and the hard working nurses :o) and realize we are very blessed for this.

Max has room to grow and more to gain but, just in his own time and with lots of love and encouragment. Oh I wish I didn't have to go to work right now cuz just talking about him makes me want to go out there and hug him up :o)

But I should go cuz daylight is a burning (and we do actually have some daylight burning here today)

Thank you for all your prayers for Max and for stopping by to see him.

Lisa, Jim, Spencer and of course Maxwell

Sunday, January 22, 2006 3:17 PM CST

Hello,

I know it's been awhile. Max has his Dr. Wical appt this week (his Neuro) and his Dentist the same day so I'll update after those appts.

Other then that. Max is doing well in Horse riding. Talking up a storm still every time we go and when we see him.

He was home last Saturday and we played. Tried to work with switches with him but he wanted nothing to do with it so we just cuddled on the couch watch a really stupid cartoon so I change it to football LOL. Then we (or I ) took a nap cuddleing Max. He's very comfy.

He also has been getting stiff when not wanting to be bothered, from what the nurses say (kinda like his letting them know and has his attitude going LOL). I noticed last Friday that he was squeezing his left hand tight. Not on command and he wouldn't loose on command but definatly squeezing when HE wants to.

He also has been turning his head to look at us when we approach him. But, it's more like a natural reaction cuz he doesn't make it all the way. It's like he starts and then is thinking what he's doing and then it stops.

When Max was home last saturday, I was tickling his face with his fuzzy pillow and he'd pout his bottom lip out like he used to do before his accident. So, I kept doing it cuz it was so nice to see a glimse of the old Maxwell. He was probably thinking "doesn't she see that makes me mad? Why does she keep doing it?" LOL

He's been making some different sounds too that is interesting. Just trying to get him to move his mouth and lips with these sounds to show him that he can form other sounds while moving his mouth and lips.

So all in all Max has been showing different things to us. Seems like small things to most people I suppose but when you see someone that can't do anything, these small things sure are big.

I have been thinking about how the Dr.'s said to give him 2 years at the most to see what happens and it really seems like it's only been a couple years since his accident.

It doesn't seem like just yesterday but it sure doesn't seem like it's coming up 6 years either. He's going to be 9 in March and that makes it all seem to real that it's been 6 years cuz he was 3 when it happened.

So, I try not to think about the years that it's been. It makes it really hard for me.

Jim is working on making a bedroom for Spencer downstairs (Spencer had been sleeping down there in the summer cuz his/Max's room gets so hot in there). Can't believe my first baby wants to move downstairs. Sounds dumb, I know but, downstairs seems so far away from us LOL.

They took their baby steps and then there comes a time when us parents have to take our baby steps to their independence.

Sure glad we had kids later and everyone one else (in the family) had theirs before us so we can lean on them and ask ?'s when we need it or just to get support from them :o). (for what ever reason may come up) I know we have already asked for advice.

Well, I'll update to let you know about his neuro appt. I don't think much will change other then maybe his meds for his seizures. But how Max reacts to the dentist again should be interesting. He did good last time

Take care, enjoy the nice weather while it's here. Could go away at anytime I suppose,
Lisa

Monday, January 9, 2006 6:52 AM CST

Good Morning,

Thought I'd quickly update while I had the time.

We were thinking that Max's seizures were getting better and then I get a call from Sugar Lake (last Friday) that he had to have diastat cuz he was having cluster of seizures for like 23 mins.

But for the most part they have been (at least from what I see) back to normal (if normal was even good. Still has to many seizures as far as I'm concerned)

Last Friday I went to see him and when I walked into his room (he was laying down watching TV) I started to talk to him and he just talked up a storm to me with his "uhs".

He was really tired and I told him he could go to sleep if he wanted to but he kept trying to keep his eye's open so I moved to the other side of the bed to see if not seeing me he would close his eyes and he did.

So I think he was trying to stay awake for me. I decided to leave so he could sleep.

Yesterday we all went out to see him and he was wide awake and again laying in bed watching TV. Jim and I walked up to him and Max started to do his talk and he looked at Jim then me and back to Jim and then me. Kinda neat to see him looking back and forth at each of us talking.

We told him Spencer was here too and Max was looking like past us to try and find him. When Spencer did come in the room he looked right at him too.

Spencer had a couple of his friends over last Saturday for his birthday and we took them swimming at the community center in Monitcello. And then Spencer had one of his friends spend the night. So, he had a good weekend.

Grandpa Jerry had pneumonia really bad this last week and was in the hosp. He's doing better now and should get out soon.

Max doesn't have any appts this month other then his Neuro one at the end of the month and the Dentist on the same day.

So, that's about it. Not a whole re: Max. When I go to see him all I want to do is just kiss/hug him so I really don't do a whole lot other wise with him. I should do more playing with him but.....

Lisa

Tuesday, January 3, 2006 7:48 AM CST

Good Morning and Happy New Year,

I think I can actually update. Seems to be working cuz I was able to put new pics up.

We had a very nice Christmas. Max had quite a few Seizures on Christmas eve that bummed me out (made me mad then cried). But I called Joanne who, of course, always makes me feel better and made me laugh a few times.

Christmas Day went much better though I didn't sleep well cuz Max was up really late and had more seizures. Makes me really appreciate Sugar Lake more knowing that he's somewhere where there is always someone to watch him even at night.

It was hard to sleep well worrying about him and those dang seizures.

Yesterday Max's seizures seemed back to normal. He really didn't have any the hour that I was there so that made me feel real good.

He was very alert and doing his talking alot with me.

Horse riding is going well. Still feeling Max having strength in his neck.

Spencer is turning 11 tomorrow. I can't believe he'll be a teenager soon. He sure looks like one already.

We were looking at pictures of him when he was about 1-2 years old and it's seems so long ago but yet at the same time not so long ago. The time flies by so fast that those years seem like a blur. We were looking at pics of Spencer when he was like 2 years old. Guess that's why we have pictures to help us remember those blurry years gone by. LOL
(of course I'm getting older too so the memory isn't what it used to be LOL)

Well, now that the holidays are over and football is done (as far as I'm concerned), it's time to hibernate til spring. Spencer is back at school today so back to the same old routine. Why they call it a new year, I think it should be called same year just a different number or something like that LOL.

We have horse riding today so maybe something really good will happen today that will just knock my socks off LOL.

If not, Spencer and I have a dentist appt today and that will knock my socks off. I HATE GOING TO THE DENTIST (even if it's just a cleaning).

Oh, the pic I have on the front page is Max at our Family Christmas Party. Jim won (at our Christmas game) the head light so we put it on Max. The pic isn't as good on the computer but the one I had printed out is SOOO BEAUTIFUL of him (ok, don't tell him I said beautiful) but he really is.

Have a good week, I better get my rear moving. And I'm so glad I was able to update finally. If I don't you know I'm most likely having trouble getting on.

Lisa

Tuesday, December 20, 2005 8:49 AM CST

Merry Christmas to everyone (or am I suppose to say Happy Holidays?)

Well whatever, I hope everyone has a nice weekend with family and friends.

So what's new? Let's see.....

Max's has been having some really bad seizures that have lasted to from 20 mins to 10 mins long without stopping. So the nurses have had to give him diastat (sp?)(rectal valium).

We did have some tests done to see if his seizure meds have to be increased and there was one that was low so we went up on that.

Max had a Dr.'s appt with his ortho last week and that was a good visit. Max's curve in his spine hasn't gotten better really but isn't any worse either so, guess we can't complain about that.

Max has been going horse riding on a regular basis and we have seen improvements in his head control. Just the other day I had Max on my lap and I could feel his neck muscles working trying to hold his head up.

He does keep it up somewhat and when it does fall down, it goes very slowly so that's a good thing to see.

Shari was nice to ask if we wanted Max to ride today (she was taking a 2 week break cuz of the holidays) but I think we'll go next Tues and today I need to get some things done for Christmas still.

I have to get the boys bedroom cleaned up for Max to come home saturday and spend the night so we can have Christmas morning. Right now Max's bed is being used by a big ol bass (the one Spencer plays). I just don't know where to put that dang thing it's so big.

Oh, and I have to ask you also (speaking of horse riding and all) if you could keep Shari's son in your prayers (his name is Josh)and he just got married this last summer before going off to Iraq. She's terrible worried about him and keeps in contact through email/phone as much as possible but it's not always possible.

So I told her I would ask all of you to do that for her (which she said she'd appreciate very much). I just can't imagine having that kind of worry in ones heart and mind til they return home and you know they are safe.

Thank you for your prayers for her son and the family. She has been so good to Max and helping him eat orally better to that isn't even part of the money for riding. Doing it on her own time.

Which lead me to telling you Max lost 3 teeth. One they found in his stander. The other not sure, and one that wasn't found at all.

We had Max home the other day to get Christmas pics of the boys. Most turned out blurry but got some. And Max looks crabby in quite a few LOL. Probably cuz I stuck the candy cane in his hand and that Christmas teddy bear in his arms. He's probably mad cuz it's to babyish and he's not a baby ya know (he never was according to him 5 years ago). I should have taken them away to see if his looked changed at all.

Well, Jim finally hit the "BIG 40" yesterday (the 19th). About time he catches up to me LOL.

Happy Birthday Jim, we love you!!!


STAY WARM AND HAVE A GREAT HOLIDAY WEEKEND EVERYONE!
Lisa, Jim, Spencer, Maxwell

Wednesday, December 7, 2005 9:47 AM CST

GOSH!

Sorry once again for not updating sooner. I tried last week and it wouldn't let me even load new pics so....

The front pic is from Thanksgiving. We thought Max should play a round of video games with Spencer (he has a controller in his hand if you look closly).

We had a nice mellow Thanksgiving. Hope everyone had the same.

I have new pics up but, they are of Spencer all dressed up for his first orchestra concert. I can't believe how nice he looked dressed up. He was really upset when we told him he had to tuck his shirt in. Boy, thought for sure he was going to just curl up and melt away. He hated it sooo much.

But wearing a tie gave him extra credit. So, we told him he could handle for an hour and that he really did look nice (like he cared anyways about looking nice LOL).

We even think he grew a few more inches with that tie on LOL. Grandpa Jerry and Grandma Joanne came over and went with us to the concert. Spencer did well and seemed really proud of himself. We had a really good time.

Max has been having good days too. His horse riding has shown us that his head control has been getting better. It doesn't just drop down anymore but slowly goes down and he tries really hard to keep it up. You can tell by how he looks up to bring his head up.

Shari (his horse riding teacher) even noticed it yesterday when he rode. He held it up well and lifted it up some (not quite all the way).

I had to laugh when I took Max outside in the cold. It was like 2 degress with a 20 below windchill. When we got outside boy did Max start to talk. He talked his talk all the way into the van. I just thought that was so cool and very interesting that he could respond in such a way to the cold. Maybe he was saying "hey lets go sliding"

Max's eating has been an issue again. I got a little (ok alot) mad at this nutritionist that was out to see the kids at sugar lake and she happened to see Max eat and couldn't believe he was orally fed (he was doing some coughing at this meal. Most times he eats pretty good with no probs).

Well to make a long story short, she had called Max's Dr. saying he should see a feeding clinic. She never even called me or sent me a letter regarding this.

I left her an email chewing her out for this. She called back and apologized for this and admitted she's not even qualified to say if Max can eat orally or not.

But as I talked with the girls at Sugar Lake we decided that maybe we could get Max to see out patient Speech/lang. therapist. I have to go through the ropes and find a close place to do this if it does happen. AND I want someone who will see that Max is able to eat and not be neg. and think well cuz of his injury there's no way he should be. Know what I'm saying.

Shari at horse riding is a registered OT and she has been helping Max(out of the kindness of her heart) more with his eating after riding.

I just want someone to improve on what he is already doing. Of course he has some days when he doesn't want to eat and he lets the nurses know this. And they know him so well that they see this and then will tube feed him.

So, I'm not worried about their feeding him. They just get nervous at times.

But Max (knock on wood) has not had pneumonia or asperated at all since his accident and not from orally eating for sure. He could asperate from tube feeding too and from swallowing his own saliva so, it's not like orally feeding is going to keep that from possibly happening.

So life goes on. We've had more ups then downs I can say that at least. OH, Max also has been showing very nice pleasant facial expressions while horse riding. Hard to explain. Not quite that smile I saw that one time but almost and looks of like he is being tickled and he could just brust out laughing. That kind. Still can't seem to get a pic of them yet. I'll keep trying.


Take care and stay warm,

Lisa

Wednesday, November 23, 2005 7:47 AM CST

Good Morning,

Thought I better update while I had time. I'm working most of the day(and late this eve) and then running to get groceriers for Thanksgiving. We're staying home and having Max home (But I do have one cleaning job to do tomorrow). Then Friday I'm cleaning all day and then the eve. After work getting living room changed around for Christmas tree.

Sat. we are going to get our Christmas tree and then decorate the tree/house. That'll take all day cuz I have so many decorations.

Max had that endoscopy thing done on Monday and we had good (great) news. There was no narrowing of his esophogus like the xray had shown. It was just a contraction, he figured, when the xray was being taken.

There was no scaring from reflux that he had to deal with which he thought what was showing on the xray if it was not narrowing.

Of course Max's opening (the hole that's to close and open when you eat) from the esophogus to his stomach stays open so that is why he has reflux. He said cuz of his brain injury that this why it's not working properly. But, we knew this already so that was no surprise to us.

So that was a relief to know that all is well and that he wouldn't do anything more about his reflux other then keeping him on previst and if Max does have any difficulty in the future with pnemonia (sp?) or aspirating then he would look further into a nissen wrap around that opening.

Max had horsing riding yesterday. He did well. Shari rocked him back and forth a little there and Max gave us another smile when she did that. One of those real ones again :o). Of course I didn't have the camera again. I forgot it.

Towards the end there when she was trying to get him to say "on" for "walk on" he made his noise and when the horse started walking Max kept saying what sounded like "ON" to us. He said it over and over quite a few times.

So Shari stopped the horse again and tried to see if he could say it again while not moving. But, he didn't. I think he needs that extra jiggleing to get the air up and out to make his voice. But it sure sounded like "ON" to us when he did say it.

We're looking forward to having some time with him here at home.

Oh, Last Sunday was Gracies 1st. birthday party. We sat Gracie on Max's lap and she sure was interested in him. She even tried to feed her baby doll's bottle to him. I said "oh look we have a nurse in the family already".

She would look at him often. Probably wondering what he's suppose to do and why he doesn't do anything. Guess she'll know that in time when she gets older when she can understand.

Max seemed to enjoy the party too. He sure perks up when going to others houses.

Well, time to get Spencer up for his last day of school for the week.

I hope everyone has a nice Thanksgiving. I know we have lots to be thankful for. First thing that comes to my mind is Jim's family, Spencer doing well in school and still liking it :o) and Maxwell's health and his beautiful smiles.

Lisa

Friday, November 18, 2005 7:41 AM CST

Morning,

Ok, I have some time now to try and update and hope it goes through.

And if I can remember what it is that I wanted to update on from last week LOL.

Max got to go horse riding last Tues. finally. He gave me (I think) a quick small smile with a very pleasant look on his face when first getting on the horse. The horse was alittle jumpy cuz she was in heat (LOL). I was worried some thinking maybe we should have a different horse? But, they said she'd be fine, just kept her away from the door leading out to the pasture. Ok.....

They did fine though (both Max and the horse). Hoping to keep going now for awhile in hopes to see some improvement anywhere with Max.

Afterwards, Shari did some exercises with Max on this huge ball and on the mat. She's very good with him.

Lets see.....Oh, I was going to tell you that about a week ago when Jim was out visiting that one of the nurses had told Jim that Max was sitting in his tumble form chair and when she looked over at him he was lifting his arm up real slowly and then placing it down again.

I guess he did this a couple times. The nurse said it was something she's never seen him do before. I know Jim used to tickle Max's little mustache and Max would lift his arm up trying to scratch (or wack his dad LOL). So Jim said maybe he had an itch he was trying to get.

But, when I was out there on a Friday, I had bought a squishy ball for Max to hold on to and he was in bed half asleep/awake and when I would put the ball in his hand he would pull away and then move his arm across his chest and lay it down.

He did this like 3 times. It sure looked like a purposeful movement to me as if he was telling me to leave him alone he's trying to sleep.

So that was cool to see him to that.

I was doing some leg stretches with him too one day (when he was awake for once) and he was looking at each of his leg when I was lifting them and stretching them.

I love it when he looks at things when we ask him to. His looking is so intense and makes you wonder what is going through his mind.

You've notice by now too that I had a ribbon put on Max's site. A guy named Jamie emailed me and asked if he could do this for Max and me and I said ok. He's done many for others on caringbridge sites and other websites. I like it but had asked him to make it alittle smaller. Thought it was nice of him to take time to do that for the kids.

Max had his physical for his GI appt this Monday where they are going to do that scope down his throat and check his esophogus (sp?). I hope that goes ok and doesn't turn into a major thing. I hate to see anything happen to his swallowing or eating.

Thanks for being patient with me trying to update. We appreciate everyone still reading about Max's day to day life and keeping him in your prayers.

We still have struggles in our life (of all different kinds) re: Max. One would think that after time has past that it would get easier but it really doesn't. It's not so much the accident now that is so upsetting it's all that what comes after words that can get us down (the how would you be today if you didn't have the accident, getting him out and about more, stuff like that).

Well, I should see if this goes through and if so work on new pics to show you.

Take care and stay warm,
Lisa

Tuesday, November 1, 2005 7:30 AM CST

Good Morning,

I was waiting to update after another one of Max's horse riding lessons but that never happened.

Max had a Dr.s appt on Tues last week so we thought we'd horse ride this last Sunday. But that didn't happen either cuz on Friday last week my car decided it needed major work on it (Head Gasket) so, I can't get that in to the shop til Wed.

Go figure this would happen. Just when we started to get going on riding again something else comes up and keeps us from riding.

We had Max's pump turned down some more at his last visit. It's down only in the am til noon and the the Dr. put it back up some from noon til 8 and then upped it more after that. So now he's on a three step level.

He's doing well with the lower am dose so next time maybe we can have it that low all day. and then up in the eve.

I did get a chance to talk with Max's Speech teacher and I had asked her about Max's smile and she said that it was a real but quick smile like I had seen horse riding. So, that was neat to hear. She said they know it wasn't a seizure smile cuz they know what those look like.

I think I kinda got one going out of him when I was there last Friday (before I realized my car was going down LOL). I was bouncing him on my knee's as if on the horse. This is no easy task now that Max has gotten so long and heavy. Almost 60 lbs and is 4'4" I think they said.

We didn't get Max out to do Halloween cuz of the car and I won't get out there this week cuz of no car and I do have an extra all day cleaning job coming up. I suppose I could take the truck out there but the truck makes me nervous driving it cuz I'm not used to it (I must be getting old LOL, don't like change here and turning into a nervous Nelly).

You'll notice that Max's site has changed some in the guestbook area. They split it up cuz I wrote that some of us were having trouble getting on the site and signing the guest book. It's the same either one you click on so don't worry about thinking you'll click on the wrong link. It'll take you to the same places and add to the guest book no matter which one you use.

Well that's it for now I guess. I wish I could have told you about some more good horse riding but......

Take care,
Lisa

Wednesday, October 19, 2005 8:54 AM CDT

Good Morning,

I just had to update again today. I would of yesterday but Spencer is home sick and has been on the computer alll day.

Ijust had to tell you about Max's horse riding yesterday (he got to start again yesterday) and what he did that just made my heart melt.

To start, Max didn't look very happy about going until we lifted up on the horse, Lady. He got really wide eyed and looked happy.

He rode around for awhile and when Shari let Max kinda slump over and let his head bounce, I was look up at Max and he had the BIGGEST SMILE THAT I'VE NEVER SEEN IN THE LAST 5 YEARS!!!!!

I swear this was not one of his seizure smile/laughs or his Elvis half smile. HE ACTUALLY WAS SMILING. I was waiting for him to start to laugh too it was so all him smiling.

If only I had the camera cuz it lasted for quite some time.
His lips where closed and both side of his mouth/lips were curled back. He really really was smiling. (I was going to add some smily faces but I've seen to have lost my smiles on my toolbar :o(

I wish I did have the camera cuz it's hard to tell you what I saw and to have seen it would have been to really understand what I'm saying.

Max seemed to really show me himself while riding cuz remember when I told you he never make his sounds when upright always laying down. Well, while on the horse, Shari would ask him to say walk on using his voice/sound and Max would almost everytime on command make some kind of noise and then when riding he at one time kept making his sounds.

Even when we were leaving. Shari came into the van and asked Max if he wanted to come back next week and right away he made a "UH" sound.

I have to tell you also thought not that Max would like me to tell you, is that he went to the bathroom while riding and the reason for saying this is cuz Max seemed to be embarrassed and you could tell his attitude had changed. He just didn't want to show us anything and so we stopped the session.

It's weird that I really show some different emotions from him in that time and could see them in the way he responded.

"OH" And I had heard from the nurses that his Speech/vision school teachers were there in the am yesterday and wrote that when Max was being read/shown (they use a lap top for stories now) a story that he responded with smiles and vocolizing and had very good eye movement to the story. So that was interesting to know. I wish I could have talked with them to ask about what they saw with his smile.

On Monday I took Max out to Ney park and we walked the trail being it was sooo nice out. I was wanting to take a different trail but have never been on them so played it safe and went on the one that we have been on.

But when we got to the very end of the trail on the other side of the pond they have, there was a big creek going through the trail that was deep and flowing pretty good.

With all the rain we had I guess the pond and lake on the other side of the street got pretty full which I did notice the lake was high when we pulled in.

So we had to walk alllll the way back around the trail. And there are some pretty big hills on this trail LOL. Skeeters were bad too.

I have some pics I took but will have to get them up later. I have to get Spencer to the Dr. here soon.

My computer is running really slow and goofy so I'm hoping this all goes through and I can get on again.

Just wanted to tell you about Max's real smile and that I have a wonderful image/memory to keep with me all the time now and hopefully will have many more to come.

Lisa

Sunday, October 16, 2005 9:39 AM CDT

Morning,

I'm sorry I didn't update sooner like I said I was going to do after Max's GI appt. And I'm been still having trouble at times getting on to Max's site. Is anyone else?

His appt went well. This Dr. we saw was saying how Max's name sounds so familiar (and the more I talked about Max and what happened to him) and he looked back in the computer to when Max was PICU in Minneapolis in 2000 and sure enough he was there when Max had his G-J tube but in.

He thought maybe he had put the tube in but didn't. He was a consult with us on it when it was time to decide to put on in.

So after we talked for awhile he decided to start Max on a stronger reflux med 2x a day (those meds that say they last 24 hours really don't and I figured that so that is why we went back to Zantac) But you can use like prilosec 2x on day. He's not back on that he's putting him on prevaset or something like that.

So after 6-8 weeks then he wants to place a scope down Max's esophagus to check where the narrowing is and to see if it has gotten better or worse after the new reflux med.

He didn't want to do the scope this time around cuz it's rather invasive and I guess you don't want to shove things down your throat anymore then you have to. So, he's just going off of what the xrays shows and what that other Dr. thinks of the narrowing.

So when he does do the scope he'll decide then if Max will need his esophagus stretched there or not and if there is any scaring from reflux.

He did mention that if there was scaring there that it can be a kinda good thing cuz then the reflux can't go up any farthere to do damage up higher. Kinda the bodies way of protecting it self but yet the scaring with continuous reflux there isn't good so that's why the new med.

I think we are going to start horse riding this Tues. I have to call Shari tomorrow to make sure she has the help or not.

I was talking to Max yesterday telling him it looks like we better get outside this week being it's going to be nice and not sure if the chance will come again.

He was laying in bed, listening to music and I also wanted to tell him about our friends dog, Babe (this is our friend and his dog down at Pulaski where Max had his accident)

Babe is 14 years old and not doing well. We just saw them last Friday and Babe can't even walk. She knows which direction she wants to go but her hind end wants to go a different direction and then she falls down. She getting skinny too.

But I was tell Max about Babe and Max started to make his Uh Uh sounds. And from then on Max was very verbal and like before making different and more stronger sounds. But he only does this laying down. Not sitting up. Which baffels me. Is it easier for him to make his sounds laying down maybe?

I was talking to Max about trying really hard to move his lips and tongue when making his sounds to get like Da Da and that out. I said I know it sounds babyish but that he has to start somewhere. He does move his lips alot already though before I even tell him to.

After I told Max to use his tongue to say like LA LA he stopped talking. And his music stopped also. I asked if was thinking about trying to move his tongue or was it cuz the music stopped? Then I said "or are you just done talking to me?" LOL

He started again soon after.

So when I was saying good bye I told him to give me a couple squeezes on my hand with his to say "love you" And I did it to show him what to do. Kinda weird cuz he got one squeeze out like 2x's in a row when I asked him to do this. Then he didn't do it again. Don't know if it was a reflex or really him. I choice to think it was him and when I ask him to do things again and again and again he just gets sick of me asking him and thinks " stop it mom, I did it and I'm not doing it again." Typical kids attitude ya know :o)

Ok, so that's my update for this time around. I know I had more things to add from last week but forgot them LOL.

I wanted to get some new pics but we don't have our camera yet (Borrowed it to Laurie to help a friend take some grad pics of her daughter) So, we'll have to get that back here some time soon.

Take care, I should be getting the Christmas lights hung up outside while the weather is decent so I'm not out there in 20 degrees wind blowing weather. I'm such a put off person. LOL

Lisa

Monday, October 10, 2005 7:47 AM CDT

Good Morning,

Just a quick update. Max has his GI consult this tomorrow so I'll update again to let you know what they said. It's not going to be a big deal I guess. Just to talk about Max's xray that he had earlier this spring when we thought maybe he had some problems with swallowing and they saw some narrowing of his esophogus (sp?).

We took Max and Spencer shopping the other weekend when I was sick during the week and couldn't get to see Max on his anniversary day of his accident.

We got his hair cut and bought him a few things for fun. Then came home for whirlpool and then hung out on the deck cuz it was sooo wonderfully warm and nice outside.

Max sure was talking up a storm that day after his bath. His voice was much stronger sounding the usual and a few more sounds came out of him :o)

He's still got his nights and days turned around. Some nights he sleeps ok and others he's awake til really late. And he seizes alot then gets stiff.

We are going to start horse riding again come this next Tues. I went to a meeting about it with the other parents.
So, I'm excited about this to finally get going again. Max really needs an activity and maybe this will help get his sleeping turned around too.

I could write more I guess but I have to get going. I have a construction clean up Job this morning. So I will write again Wed.

Have a good Monday,
Lisa

Thursday, September 29, 2005 7:49 AM CDT

MAXWELL SCOTT GOSEWISCH


MARCH 20, 1997
SEPTEMBER 29, 2000

We were blessed with a little red haired boy.
We grew to love and adore him.
He enjoyed life (who doesn't at that age :o)
We watched his personality shine in 3 1/2 years.
So full of energy and lots of spunk :o)
We had times of tears
But we had lots of fun and lots of laughs also.


SEPTEMBER 29, 2000
SEPTEMBER 29, 2005

We are blessed, once again, with a little red haired boy.
We have grown, again, to love and adore him.
We admire his strength and will to live life again.
We've watched his personality shine through those big blue eyes in 5 years.
He may sleep alittle more now but we know he has spunk :o)
We may shed more tears now
But we still have lots of fun and lots of laughs also.


We love you so much Maxwell.

Mom, Dad, Spencer, Moo and Belle

Saturday, September 24, 2005 8:11 AM CDT

Good Morning,

Sorry (again) for not updating sooner. I guess I really don't have much to say so I was waiting for something to write.


We had Max's pump turned up more in the evening and less in the day and that seems to be working for him now.

He's been sleeping alot (during the day) when I see him so that's why I don't know what to write about him.

Yesterday I tried to get out there when he was in the stander so I could play with him but he woke early and so they fed him and got him in the stander sooner. By the time I got out there he was done and sleeping in the recliner.

I did give him some bear hugs that made him talk to me in his sleep (probably saying leave me alone, I'm sleeping. Didn't you hear them say I woke up early?).

I tickled his face and he made his tight lips again at me. And told him to wake up and talk to me and then his lips would move but he wouldn't wake up.

Haven't heard anything about horse riding yet either. I guess I should call again. Kinda bummed out about this. I thought this was going to be such a great thing and now wishing I'd stayed with Freedom farms. I mean something is better then nothing and he's getting nothing now (and all summer) But, I do understand how Shari was busy this summer. Guess we just hit her at the wrong time.

Max's anniversay date is coming up this Thursday so this has been on my mind. Of course Max and I will do something that day to keep us busy and our minds off what happened that day five years ago. I may have to work a day job that day but if I get my butt moving in the morning and get that done, I'll still have time to take him out maybe to a movie or something.

Spencer is starting school off to a good start. So this is really good to have. Just hope it keeps up through out the year and he doesn't slack.

He has decided to play in the orchestra and play the bass (yes that's the big string thing like an big upright violin). And with his height he can play the second to the biggest one they make.

This should be interested and we actually hope he likes it and does well. I was surprised to see how many of his friends had joined orchestra. I would never think to join that in my school days. I would have been such a geek for joining (ok, bigger geek then I was LOL).

So we rent a bass for home at 60 bucks a month (UGHH!!) and then we are to place it some place (when not in use) safe. Where in our house is there a safe place LOL.

But glad he is showing some interest in something other then video games at this time.

I've also been keeping an eye on Hurricane Rita being that my mom lives in Texas. But, she lives down far enough to where Rita ended up missing her and they didn't (I don't think) even got any/much rain from her.

So, I will updated sooner this week after Max and I have our day out. We really should be getting him out more being the snow may fly soon. That's another guilt that I have hanging over my head is not getting him outside while the weather has been decent. Seems my guilt with anything related to Max is just piling up in my head. I don't do this enough or that. I don't get him home or out and about enough. Did I make right decisions for him.....Never ending since that terrible day. Thought things would get easier and my mind/heart would be at ease some.

Well, I should go before my mind really gets into deep thoughts about all this again. Already was there this last week while at work. And we have city clean up today, need to get rid of some junk and then off to Joannes house then we have a couple friends birthdays to celebrate.

Have a good weekend,
Lisa

Monday, September 12, 2005 11:22 AM CDT

Hello,

Sorry I didn't update on Friday like I said I would.

This Dr. was really nice and funny. He gave Max another kind of eye drops that are more kid friendly and that if the redness doesn't go away in a couple weeks or if it does and then comes back (the redness), he gave me another type of eye Dr.specialist to see.

Max's eye's though weren't even 1/4 of the redness that they had been in the past.

He did say too that the one Dr. was right about Max's optic nerves being very little damaged considering the brain damage that he suffered from his accident. So this was good to hear.

Max slept the whole time while this Dr. was looking at his eye's. I tried to wake him and Max would make this pouty look on his face like he used to make before his accident when we tried to wake him. So, it was sweet and fun(ny) to see a glimse of the old Max again.

I guess I was wrong about Max doing fine with his pump being turned down. Jim found out last friday when seeing Max (the nurses told him) that he is having stiffness issues at bedtime while getting him ready for bed. But once left alone he would calm down.

I called to find out more from the nurses (evening nurses) and after talking we figured that maybe he'd work through this and be ok cuz they didn't feel a concern at this time.

Well, I called today and I guess Max had to have that choloral Saturday and Sunday night cuz he wouldn't settle down. I'm assuming this because they just wrote in the nurses notes that he was stiff. And on the med sheet that they had given choloral.

I wish they would write more details of what he was doing so we'd know and not have to guess. I'll have to call the evening shift to find out.

I'm thinking that we may have to go back to that split dose on his pump where it's up more in the evening and lower during the day but, we don't really know how he is during the day cuz he's been sleeping alot cuz he's not sleeping well at night I guess. The choloral could wipe him out too if he's getting that at night.

So that's about for this update. The day is flying by and I haven't even started my day yet LOL.

Take care,
Lisa

Thursday, September 8, 2005 6:52 AM CDT

Good Morning,

Sorry I haven't updated lately. Been busy with school starting and getting Max's appts in line.

Max has his eye appt this friday with that other eye Dr. Max's eye's have been getting red off and on so we'll see what this Dr. says.

Max also will start horse riding again in a couple weeks so I'm excited about that.

Max is doing well with his pump turned down from last refill so that's really great. Horseriding should go good I hope and he'll show some progress in his head control and maybe more :o)

But, I will update this friday after his eye appt.

See ya Friday then :o)

Lisa

Friday, August 26, 2005 8:14 AM CDT

Good Morning,

Sorry I didn't write sooner. Had to try and get back into the swing of things after vacation (camping). It's hard work trying to be lazy when you go camping LOL. So use to running around doing things.

Our boat decided it wanted to be lazy while up north also and quite on us while boating. We had helped tow a pontoon boat in shore that day that had quite on this family and then about 4 hours later our boat did the same. We had to be towed in.

Now the rush to get Spencer ready for school/hair cut and I'm doing extra work this next couple weeks and Jim is working over time to get his school ready for school.

Speaking of Spencer. Poor kid. Our Baby Belle (kitty) was either excited to see him after vacation and was playing or mad that we were gone so long cuz she gave Spencer a cut right on his eye ball. Now his eye is all RED.

Then on top of that his other got all swollen and down his face from posion ivy that he must've picked up just before we left from up north. He looks like he was in a major fight. "Wonder what the posion ivy looks like" (LOL, get it? Usually you say "wonder what the other guy looks like" Ok Dah).

So very excited to see Max when we got back. He had his botox done on his wrist and arms while we were gone. That turned out well.

I took him to have his Baclofen pump refilled and we had that turned down more and he (knock on wood) is doing well at the lower dose.

I also had a message left re: that barium test he had done before we left. They had said all was well but now that Dr. said she did see some narrowing in his middle to low esophagus. She thinks that maybe it may be scare tissue from his reflux or nothing at all.

She thinks maybe he should have a GI consult (gastrial intestinal or something that means). Just to make sure all is ok and if we need to change his meds for reflux or what.

She said he can eat orally still cuz it's not blocking anything on the way down. He has been eating better and then there are days when he just doesn't feel like it and does his coughing which I think is his way of saying "not interested". He did throw up right after breakfast for no reason the other day. At least no reason that we can see.

We have a birthday party to go to on Saturday and we are taking Max. It's just down the road from Sugar Lake so we thought it would be a good time to get him out. The weather is nicer out now to get him out and about more also.

And yes it was my Birthday last Wednesday (Aug 24th) Thank you to those who wrote in the guestbook wishing me a happy day. I'm not alone in turning a year older, my sister in law (Laurie) had hers while we were on vacation. My other sister in law (Carrie) gets to have hers first in June.

We're all the same age but Carrie gets to be the oldest first. HA HA. Just kidding Carrie.

Well, I should get going. I have an extra cleaning job. My boss has a rental house he wants cleaned and he's on crutches so would like me to clean it for him. Better be a cash job being it's out of my norm type of cleaning LOL.

Max is doing well, his seizures don't seem to be too bad. I guess the usual but yet better at times. He has his eye appt coming up the 9th so that should be interesting to see what they say cuz his eye's are starting to get red again.

Some other appts coming up too. Bone Dr., dentist...busy, busy, busy.

Take care and enjoy the nice weather,
Lisa

Friday, August 12, 2005 8:26 AM CDT

Hello,

Well Max had that swallow test done yesterday. There was some confusion as to what type of test he was to have so we thought we were going to have to reschedule.

They called Max's peds Dr and after another hour we finally got the right test and we were where we were to be.

So what Max's peds Dr wanted was this scope type test to see if Max's esophogus had any narrowing or blockage that kept him from getting his food down.

They had a nasal tube put in and some liquid stuff put in through the tube that showed up on the exray to see Max's esophogus and all was fine.

It did also show that Max still has reflux but he was laying down and even then it didn't look to bad so figure when he's sitting up it really can't be that bad all together.

They rolled him around also and things looked good.

So that Dr. felt Max could eat orally fine but we have to have the ok from his Peds Dr.

Max did eat supper orally and did fine. Did his usual coughing a couple times. But at most of his meal.

I really think as my first thought is that his head control is the problems and keeping his head up to open his throat more.

Funny as Spencer and I were talking in the car about Max and this test, I mention how weird it is to think that we can hold our head up without thinking about it. That there is this part in our brain that if it gets damaged we could loose that control though we really aren't controlling it

Know what I mean? It's not like we are always thinking about havnig to hold our head up, it just happens.

I know that goes with alot of things that we do (movement and all), we don't have to think about it, we just do it but poor little Max has to think and try really hard to do these things.

I forgot to mention that last Monday when we were at the Hosp, we stopped in the PICU to see anyone that may be there from when Max was in PICU.

We did see his day nurse, Jane. She was so happy to see Max and said she had always wondered what happen with him. So we updated her on him. She thought he was just adorable (of course) and grown so much. We gave her some pics of the boys to show the other nurses that cared for him. They all still worked there.

I want to thank those who donated money to Max for horse riding (if we every get to go again LOL) Things come up where it just hasn't happened lately. We of course had what we thought would be that swallow test last monday and this monday we will be on vacation (My mom and her husband will be staying with our kitties while we are gone).

I haven't heard from Shari either so, I don't know when she plans on starting again or if she is still having family time with her son.

There was confusion about how much the riding cost and it's more then I thought but was thinking that maybe she is combining the riding and some OT therapy with it and that's why. Like I said I haven't had a chance to talk with her.

But no matter how much is donated it helps Max and us out to get him those rides in. I'm glad he is able to go all year round so he can and will get some more in I know.

Well, time doesn't seem to want to stop for me here and I have a million and one things to do so I better go. I haven't even started to pack for camping. This is when I wish I was just covered with fur like a cat and didn't have to worry about what clothes to bring LOL. Jim's almost there HA HA HA Just kidding Honey. I love ya.

Thanks for the prayers and support for Max. Gonna work him hard when I get back and get that head control going again.

Lisa

Tuesday, August 9, 2005 9:51 AM CDT

Good Morning,

Few things to update on and then I'll update again after Thurs cuz Max has a swallow test on that day.

He was to have it on Monday at Minneapolis Childrens hosp (that's where he was sent to after his accident to PICU) but, they needed a referral from Max's peds Dr. here in Buffalo that they never got and was a hassle calling them back and forth talking through voice mails. So, we ended up reschudeling cuz we weren't gauranteed to get the test done being it was way past his appt time.

Max was seen by his school speech therapist and she suggested the swallow test thinking he may be having trouble and could aspirate and that he wasn't getting all of his food in (lots coming out of his mouth).

I think his head control that he had has been lost and also his head rest on his wheelchair is and has always been a piece of....no good shall we say.

Max missed horse riding again yesterday being we thought he'd be having this swallow test.

His chest congestion is better but comes and go at times.

Gee, we aren't even thinking about his seizures at this time and his eye's. The drops that he was on are done with and so far his eye's are staying clear from being red.

We have that second opinion eye appt coming up here in Sept. Plus we had cut back on one of his seizure drugs so guess we'll see if the inflammation in his eyes is gone.

So, We're saying our prayers and keeping our fingers crossed (for back up LOL) that Max passes his swallow test. He seems to swallow his spit very well. You'd think that if he would aspirate that he would have been doing so with just that and his weight has been staying the same though not gaining with his oral eating so he must be getting most of his food down.

Guess we'll see if he gains weight this pass week being he's getting tube fed all his meals with just small bits of food in between to keep his swallowing up and give him taste of food.

I'll let you know what we find out after thurs.

Lisa

Saturday, July 23, 2005 12:00 AM CDT

Hello,

WOW, we just had that wicked storm blow through here. Kinda scary when you haven't seen one in so long.

I put new pics up cuz we had Max out and about last Thursday. We took him down to the lake.

He seemed to really like it down there and was looking around at all the people swimming.

We didn't prepare well and didn't have Max's suit on. We thought about sticking him in the water anyways but it was so hot in the sun and the lake was pretty cold so figured he'd not really like it. I know he gets stiff when cold water touches him. Been there before LOL.

We came home and ate lunch and then Max watched Spencer play his games on the computer.

He's so funny to watch him looking all around. While eating lunch he would sit and look all around the kitchen and look at my boarder with the fat chefs on there.

Watching him watch Spencer play his games and looking all around the computer room. I just wonder what is going on inside his head and what he's thinking.

He did do his talk to us quite a bit earlier.

Yesterday though Max sounded congested and when in the stander was showing signs of stress. So the nurse took him out and checked his Pulse and O2 and his O2 was only 80 (he's to be no lower then 94).

They gave him some dimatap and then a nebulizer and had him on oxygen for awhile. About an hour later he was fine. He still sounds congested so mayb he's getting a summer cold or something

Max had another riding lesson last Monday and did pretty well. Towards the end he started to space out. His seizures seem to be pretty good when riding. Maybe one big one and a couple small ones.

Wanna get him to see Charly and the chocolate factory. I think he'd like that. I think the colors would be cool for him to watch. Seems like it would be a colorful movie.

Well, that's about it for now.

I would like to thank another reader for offering to pay for a riding session for Max. We really appreciate the donations. We really want him to go as long as he can. I really think he likes to ride and he sure does look at the appropriate things when we ask him to.

Take care and God Bless,
Lisa

Thursday, July 14, 2005 7:14 AM CDT

Good Morning,

I can't believe I'm up this early. I'm having a garage sale and I'm not quite ready yet so I couldn't sleep knowing I'm half way done and need to get going if I'm going to do this LOL (Donna, that means "laugh out loud )


Just wanted to update to say "Yes", I finally got some new pictures up of Maxie.

The front picture I took last Friday when I took Max out to the lake near Sugar Lake at the boat landing. Can't think of the lakes name now. But, it was nice and cloudy so it was a good day to take him out. It was super warm though but there was a good breeze coming from the lake.

As I look at the pictures I put up, I didn't realize how tall Max is getting. He's got legs that go forever LOL. The horse riding pics I put up, you can see this too.

Speaking of horse riding. Max is able to go for 10 rides now. We found out that no Insurance or waiver or MA will pay for hippo therapy being it's concidered an alternative therapy. Though she does do Occupational therapy on Max, the horse riding is done with it so they won't cover it.

But, Sharidise gave Max some money from this scholarship that they received so that's why he has 10 sessions.

She's such a wonderful person and believes in Max that he can gain some head control and possibly more. She really goes that extra mile and you can tell that she believes in hippo therapy helping and just loves the kids she works with.


I also received an email from someone who reads Max's website and she and her husband have offered to donate some funds to help Max have more riding sessions.

You could imagine Jim and my surprise to receive such a generous offer.

We can't thank them enough for giving Max such a wonderful opportunity to have more riding session so he can gain some strength in his head control and upper torso.

We know this riding has helped cuz we have seen it with him before. It's just it's been awhile now so he kinda has to start over again.

We would really like to give him a good years worth of riding straight with no stopping (if possible) to see how much this can help him.

Just this last Monday on his first ride he didn't show any signs of pain and the look on his face was rather pleasant and happy to be back riding.

He was quite verbal also. When we would ask Max to say "ride on" he would make his "uh" sound.

When we asked him to look at Joe, he would find Joe and look at him (Joe was leading the horse). And who would think he would remember who Joe is since he hasn't seen him for a couple months.

In the coming sessions, she will work Max on the mat for about 20 mins giving him good Range of motion and stretches and then the rest will be riding.

Max has a pump refill in August so I'm going to ask if they can turn that down to see if Max can gain some head control and maybe upper torso too.

As far as his red eyes go, they are gone for now but that is cuz he's on the eye drops. I don't know if the inflammation is still there (I'm not an eye DR. LOL)

We'll find out more about that come Sept I guess at this eye appt he has.

Oh, yeah, Max didn't have that many seizures while riding either. Maybe 2 big ones in the hour he rode.

Well, I better get going. Almost 8 am and I need to run some errands before opening up my sale. Gee, I better put sign outs too. That would help some.

Stay cool,
Lisa

Friday, July 8, 2005 9:55 AM CDT

Good Morning,

Can you believe I've updated like 3 times in a week LOL.

I just wanted to say that I did talk to Max's neuro and she didn't think that any of his meds would cause him to have red, inflamation in his eyes but would check into his Celontin seizure med that he is taking cuz that is the one that we have been upping for his seizures.

She also said she'll have that med dose downed back to what it was before his eye's got red. This med can stay in his system for 2-3 weeks so it may be awhile before we see a change.

She wants him to stay on the drops for the length of time that was ordered and also to get a second opinion about his eyes (so glad she agreed with us on that cuz she was surprised that this eye Dr. said it was his meds most likely and left it at that).

I did get two names of Eye Dr's. from a nurse at Childrens West and Dr. Neuro (Wical) told me which one she would take him to. But we can't get in to see this other eye Dr. til Sept 9th.

I bet we'll know before then if it was the seizure med that has caused this eye problem.

If it is the med, Dr. Wical will remove this med all together. She doesn't want him (like us) to have this eye problem.

So, I'm feeling much better knowing that we are trying to find the reason for all this. Oh, and his other prob may be because of the med also. Can cause upset stomach so that's why he may have diarreha. We're to wait a few days to make sure it's not a bug he has being he was running a slight temp.

Well, I have to run. I need to Call Max's horse riding place to see if he's still scheduled for Mondays ride. I sure hope so. I need to get him out and about.

I'm going to take him out today being it's not real sunny out (ok, it's not sunny out at all which I was hoping for today. I kinda wanted to just veg out there for a couple hours to regroup myself after this week)

Thanks again for the prayers for Max. Still could use them in hopes of finding out for sure why Max is having this eye problem.

Have a nice weekend (that is already here again?)
Lisa

Thursday, July 7, 2005 8:34 AM CDT

Good Morning,

I just wanted to give a quick update on Max.

His eye's have turned red again and this time the Dr. said that it's an inflamation and that he doesn't know why, could be his meds.

I guess he left me with no answers and said they could always be this way or may leave on it's own. That we could get rid of some meds to see which may be causing this (not easy being they are his seizure meds and weaning is a long process).

He put Max on the same drops as before being they got rid of the red but they don't get rid of the inflamation.

And these drops have a steriod in it so if on long term can cause glucoma, cateracts and that testing is done on a regular basis for those on this drop but, Max would be hard to test cuz of his disability.

Max is just on it for a short time and on a very small dose.

I'm so upset by this cuz Max's eye's are such a big part of his communication to us (and such a beautiful blue)that I don't want anything to happen to them and I really don't like them red cuz they do look so painful (which the Dr. said he probably doesn't have much discomfort cuz they are really moist like they should be).

Max also has been having diarrhea since last Saturday except for Tuesday so, I don't know what's up with that. He does have a low grade temp right now but before he didn't.

I've just been in tears the last couple days. Here I've always wished and prayed for Max to gain some progress and try to get back some of what he's lost and just yesterday I'm wishing he would just be a normal (with no problems) disabled child. He was doing so well with no sickness or other physical problems.

Guess these things happen but it's so hard to deal with. I know Max will get the flu, colds and those things. It happens.

They red eye's I really can't deal with. And not to have a real answer as to why they are inflamed. We going to try and get a second opinion.

I also have to call his Nuero to see if his meds can cause this (red eyes)and possibly be why he's having diarrhea cuz we have been uping one of his seizure meds.

So if I could ask for your help in praying for Max that this red eye stuff isn't permenant, I'd appreciate it.

Like I said his eye's are really the only thing we have that shows us Max's understanding when we talk to him.

Thank you so much,
Lisa

Sunday, July 3, 2005 12:21 AM CDT

Hello,

Just wanted to say Happy 4th of July.

And hope everyone has a safe and fun holiday.

We've been having another busy weekend going from place to place. But, having a good time with friends and family.

I finally got a new pic up of Max. I took this pic of Max before I cut his hair. Needed one pretty bad LOL. But I had Spencer showing him our new toys to play with out in the yard.

I don't really have to much more to say. Just wanted to get new pics up and the ones I'm putting on the pic page is of Jim's up north trip. I don't really have any others.

I plan on getting Max and Spencer outside next week, seeing it looks like it's going to be nice out all week, and take some new ones of them together.

Ok, so take care and will see ya soon again.
Lisa

Thursday, June 30, 2005 11:01 AM CDT

Hello,

We saw Max's nuero Dr yesterday and I guess we are still working with his meds to try and get some of his seizures to go away. We are upping on med being it was so low in his levels and if we see a change we'll just up one of his others.

If no change then we are going to try one that we had tried on him the very first time but made him have shakes really bad.

Now that he is older the Dr. said this med may help him better and not have such fluxuating levels (which caused him to shake).

He was sleepy the whole trip to St. Paul till on our way home, then he was wide awake. But he yawns alot and makes this different noise which I had heard before but Jim hasn't so it took him by surprise.

I'm excited for Max to horse ride again which will be second week in July he can start.

So much for having nice weather on our week off. This is just to depressing. Need it to dry up so we can get out in the woods with Max on those trails we found last year. But I bet the skeeters are nasty now cuz of all the rain. Just can't win LOL

Well, I need to go, finally made Spencer and I dentist appts and being it's icky outside I guess we'll not cancel LOL.

Lisa

Wednesday, June 29, 2005 8:28 AM CDT

Morning,

We see Dr. Wical today so I'll will update when we get home to let you know how it goes.

Lisa

Saturday, June 25, 2005 11:43 AM CDT

Hello,

I know, I konw, I'm slacking here with my updates and those pics........just can't find the time to just sit and get them done and up.

Since Spencers been out of school, all he does is sit on this dang thing.

He started his summer school class so that helps some and he went to the beach with some friends the other day.

We also set up a volley ball/badminton set so we've been playing with that.

Jim and I have this week off so we'll go to Valley fair some day here and try to do some other stuff locally.

Last weekend Jim went up north with Scott. Had a good time. He needed to get up there. It's been awhile and I know he really like to go up there at least one time in the summer LOL.

Max FINALLY is getting his red eye's under control after the 4th type of eye drops we are trying.

Got him home on Thursday to cut his hair and play some with him. But he feel asleep on me when we were out on the deck so, I watered my plants and then squirted Max's feet with the hose water.

Must've been to cold for him cuz he sure didn't care for that. Lifted his feet up and made his "not liken it" face.

Guess he doesn't get real hot like us being he's not moving around.

I also gave him a bath on the cooler side and like I said I was hotter then heck thinking he'd be too and that a cool bath would feel good.

Nope didn't care for that either. He was stiff as a board and did alot of piddle shivers.

I washed his face and he gave me a new look that I hadn't seen before. Hard to explain but believe me it was funny looking. Thought for sure that he get some kind of words out to yell at me LOL.

But boy I don't dare give Max a bath anymore without Jim here to help. I practically dropped him on the chair that we have for him in the tub. Then getting him out was another whole ordeal. I was nervous but, we made it out of there (barely). He's getting bigger and I'm getting older and the two just don't mix anymore.

He has a Dr.'s appt with his nuero this Wed. His seizures are the same as always.

But he's doing really well with his leg now that the hardware was taken out. His leg doesn't bother him at all now. And he healed up sooo well again. Doesn't even look like he had surgery there again.

Did I tell you they got another boy out at Sugar Lake? Well they do. I think I did tell you this.

I noticed someone wrote in the guestbook about her child that drowned 27 years ago. I haven't written her back yet. Been meaning to (you know me well enough by now LOL).

Been also hearing/reading about so many drowning accidents this summer already.

It's so hard knowing what so many people are going through when this happens. You just don't want to hear about it. You just want to talk to them to let them know that they aren't alone and that others know what they are going through. I know most don't make it at all but, sometimes I think if they knew that maybe it's for the best.

I'm not saying I'm not grateful for still having Max. I could never imagine my life without him even as he is now but, I do wonder what goes on in his head and if he's really happy being like he is. Or is he depressed, mad, maybe he doesn't even know.

I don't know..........I still have millions of thoughts that go through my head and I still get upset at all this and think how unfair it is for him (and Spencer).

I've been really thinking about Spencer lately and not having any friends close by to play with (he really only has 2 he likes to hang with) and my thoughts go to well you had a brother to hang with til I screwed that up. See, it's that time of year when I feel guilty trying to entertain Spencer and also get Max out and about while the weather is nice.

I feel so pulled in so many directions in trying to just do what I feel is right as a mom and it doesn't seem to be working for me LOL. Then I get no where cuz I expect to much out of myself.

Well, I guess I spilled my guts more then I thought I would. I shouldn't listen to the news anymore maybe. Isn't that where all this started LOL.

Well, Spencer is eyeing me up for the computer (again). So I won't be getting any pics up LOL. I do have some really cute ones of Ezra's little girl, Gracie. I'd like to get them to so you.

Bare with me, I'll get new ones up some day.

Have fun in this nice weather we finally have.

Lisa

Monday, June 13, 2005 9:32 AM CDT

Good Morning,

Not much to say this time around again. Max still has his awful red eyes.

The poor guy has a hard time keeping them open cuz they must bother him so much. So, he sleeps alot.

I took him to his Dr. last Friday and today we are seeing an eye Dr. for some stronger eye drops and find out what exactly might be causing this.

So Max has been laying low til we get this eye thing cleared up.

I wanted to get his hair cut but afraid I would get hair in his eyes (usually do cuz I'm not the greatest at cutting hair LOL) and didn't want to irritate his eyes more then they are.

Max I hope will start horse riding early July here (his hip bone should be healed up by then). Found out our ins. won't pay for it and also Max's waiver won't pay for it so we are going to try MA to pay for it. If not then I don't know what we will do.

We've been busy with Graduation party's every weekend this whole month.

We have a week off coming at the end of the month but will be staying home to get some things done around here and visit some things close to home. Max see's his Nuero Dr. during that week too so we couldn't leave anyways.

So, I'll let you know what we find out about his eyes after today. And get them cleared up so Max can get outside (the day light bothers him and makes his eyes water).

Hope every one got to enjoy yesterdays weather. I'm hearing this weekend coming is to be super nice too.

Take care,
Lisa

Friday, June 3, 2005 9:42 AM CDT

Good Friday,

Another cloudy day. Getting real tired of it LOL. Need some sunshine boosting here.

Just wanted to let you know that Max surgery went really well.

Now he just has to heal up. He can do everything as norm but just have to watch any quick movements on that one leg and make sure he doesn't twist his leg the wrong way.

He did get sick from what we hope was his pain med. And his allergy eye's are looking better.

He needs another hair cut here soon. Getting real poofy and curly. Now that it's warm out we can give him his hair cut outside and make the mess out there, so then the birds can use his nice red hair for their nests LOL.

I forget to say last update that our Nephew Ezra graduated last weekend "WAY TO GO EZ!!!".

So, we had a family get together for that. We were going to bring Max but with his allergies and the surgery that Tues, we thought it best to keep him indoors.

Spencer is done with school now too for the summer. Now we can sleep in :o) He's got some summer school things lined up and wants to try wrestling so he's doing a westling camp this summer.

His last grades were really good so were very proud of him. Just shy of making the "B" honor roll.

Well, I better get my lazy body going. First day of summer vacation and I can see this will be hard for me to get up in the mornings and make myself get going LOL.

I'll write soon again and sorry about the pics being the same. I need to get some new ones taken. I could use a good one of the boys together dressed nicely, it's been awhile. I could use a nice family pic. That's really been awhile LOL

Lisa

Friday, May 27, 2005 9:43 AM CDT

Good Morning,

Sorry I haven't put new pics up like I said I would do. It's been crazy around here.

I've had extra cleaning jobs these last 2 weeks and Max's appts, trying to make it to my karate class (I tested on Monday and received my green belt last night so I'm excited about that. I'm half way there to my black belt LOL. I'll be 50 by the time I get it LOL)

So, I got Max outside this one nice day we had (last Monday) and at the beginning of the month the Dr. had given us eye drops for his pink eye. Now we didn't think it was pink eye and think it's allergies.

Well like I said I had taking him outside for a stroll on Monday and had Max smelling lilacs and some other flowers we saw along the road, not thinking about his allergies, And I guess that night his eye's just got red, red, red. And they seem to be staying red for the most part. I feel really bad not thinking about that when shoving flowers in his face.

So now I have to go to the pharmacy for his eye drops for allergies and get them out there so they can start them asap.

But the cool think was when I took him out was that when I would ask him to look at the trees, he would look over to them (and his head would turn too) and then he'd look back at me. He did this a couple times. And when I did put flowers in front of his face to show him he'd look right at them. I bought him some suckers too the other day and he looked right at them when I asked him to. Seems to know where to look when I show him. Maybe I should hold things off to the side or father a way to see if he can find them.

Max had his dentist appt last Wed. and he did sooo good. We are so proud of him letting the Dr. clean his teeth TWICE. He fist did just the regular cleaning and then did a thing he calls sand blasting. But it's not really sand it's baking soda LOL.

Max only got upset when they first started and then when they turned his head to the left. I think he was looking at the dentist trying to figure out what kind of goofy glasses is he wearing and not realizing what the dentist was doing to him LOL.

So I'm really glad we made it through that with no problems cuz I don't like to see Max upset.

Yesterday we had his pre-op physical and that went fine. Kinda a waste of time if you ask me. They don't do much LOL. look in his nose, ears and mouth, check his lungs and that was about it. Heck we know now what to look and hear for, we could have done it ourselves LOL.

So this Tuesday is the big day for his hardware to be taken out. We pray that all goes well and from what the Dr. says it's to be an easy procedure to take it out. I just don't like to have Max put to sleep any more then we have to but...

Haven't heard about horse riding but Max can't for 6 weeks anyways after surgery so guess I won't worry about it to much for now. Just want him to keep his place there and hopefully get a new order for him to have O.T/riding ok'd from the Dr.

I hope everyone has a nice Memorial weekend. I hear the weather will not be all that great but, then when has it been on this weekend.

I should go, I have another crazy day ahead of me and 5 buildings to clean so I can have the weekend off.

Take care and thanks for the prayers for Max's up and coming surgery. We'll let you know how it goes and how he's feeling afterwards.

Lisa

Tuesday, May 17, 2005 8:39 AM CDT

Sorry I haven't updated in awhile. Not a whole lot to say.

Max was getting sick there for awhile and we weren't sure as to why. There didn't seem to be a rhyme or reason to his throwing up. I did have the Dr. check the amount of Zantac he got being he has gain some weight since he started that and so she went up on that alittle bit (thinking maybe his reflux was bothering him).

He seems fine these last few days.

Yesterday he talked his talk to me for an hour. He just kept saying his "Uh, Uh's" which I thought was interesting for him to do. He's never vocalized this much at one time.

His seizures are the same. We thought they were getting better but.....back to normal again.

His horse riding was cancelled this month due to personal reasons at the riding place. Didn't really matter anyways cuz Max couldn't make it on the days she had wanted him to come and ride.

He has his surgery coming up too so then it'll be another 6 weeks before he can ride. Shari said she has other ideas for him that would help with his head control while waiting for the 6 weeks time.

Max has a dentist appt next Wed. Curious to see what they say. I need to get Spencer to a Dentist too. I'm trying to find one we really like and can get in to see when we need to and not wait 2 months out.

Like I said not a whole lot to say. I would really like to see the sun come out. Feeling blah these last few weeks.

I'll try to find some pics to put up for a change.

Take care,
Lisa

Friday, May 6, 2005 7:46 AM CDT

Good Morning,

WOW, some nice weather finally. Even if it does rain at least it will be warm rain (hopefully :o)

Well, I don't have to much to say this time around. We were thinking Max's seizures were getting quite a bit better but now in the last days we noticed that they are back to what they were.

Max is scheduled to have this hip surgery to have that metal bar removed on May 31st. We have to be at St. Paul at 5:30 in the morning UGHHH!!! So we're talking getting up like at 3:00 am. I have to have at least an hour to wake myself up and then getting Max takes a good 1/2 or a little more. But the traffic should be no problem at this time in the morning LOL.

He also has a dentist appt coming up here soon, so that should be interesting to see how his teeth are. The last appts were kinda hard on him cuz they would pry his mouth open and do a quick check and say they are fine.

This time we are actually going down to Gillette and I think they have him go to sleep to check his teeth (this was my understanding)

Max got sick last night (threw up) not sure what that was all about. He was really sleepy and couldn't eat orally for breakfast or supper (did eat orally for lunch though).

Guess he's fine in all other area's, no temp or anything.

Still trying to figure out horse riding for the weeks. Plus with his surgery, Sheri said instead of riding she can do other things with him to help with head control, like bouncing him on the big ball.

I just want that leg babied really bad for the six weeks so it doesn't break. I would just die if something happened like that.

So I guess that's all for this week. I hope all you mothers have a wonderful mothers day.

Jim,

Just wanted to say "I LOVE YOU". Thanks for always being there for me the last 14 years (and then some :o) and keeping me going strong when there were times I just wanted to crumble. You've given me two beautiful boys and an extended family that I very much needed.

(Our anniversary was last Tues)

Lisa

Thursday, April 28, 2005 6:47 AM CDT

Good Morning,

I hope everyone is stay warm with this cold weather we are back to. We really got spoiled with that warmer weather. I hope that wasn't our spring and it's all over now LOL.

I was waiting to update til we saw Max's orthopedics Dr's yesterday.

He said Max's back looks really good and that his spine has even improved some with this new TLSO. So that was great to hear.

His hip is also looking good and we are going to have that piece of metal taken out real soon here being it seems to bother Max now and that some bercitous (sp?) is settling in there. That piece was going to come out anyways. They don't leave them in with children.

But the bummer part is that Max will have to hold off on horse riding for like 6 weeks being that this metal piece will be leaving 3 holes in his hip bone (6 weeks to heal in) from where the screws have been. I knew this would happen and I guess was expecting it.

So Max's bones will be weaker in that area for awhile and we'd have to be super careful not to twist him in any wrong way. Standing and bring the leg outwards, is ok for him but no twists and careful bending at the knee.

Speaking of horse riding though. Max was doing really well. Jim and I have noticed that Max is moving his head some on his own lately (from side to side when looking at things).

Last horse riding, Shari would ask Max to try and say "walk on" for the horse to walk. I swear every time she asked him that, Max's mouth (lips) would start to move. I think I had mentioned this last time but this time it was every time she would has him and then his lips would stop once they started walking.

He would make sounds off and on also when asked to say "on".

She, Shari, is so good with idea's. She had BIG Spiderman beach towel and Batman beach towels hung up in the area so when they would ride they would stop and she would ask Max to find one of them and he'd loooook at them :o).

She has music playing in the arena.

She even had her litte dog, Reagan, riding with Max and her on the horse. It was so cute and of course we didn't bring the camera this time round.

Ya know I had mentioned last time that we had stopped that icky seizure med we thought we'd try again and I'm so glad we did cuz now we have upped one of Max's other med that he's already on (he weighs more so his levels were down meaning the dose was not enough to help him).

Anyways, we think we actually see Max's seizures better. At his appt yesterday he only had like maybe 3 of those big ones so that is really, REALLY GREAT for him. Being we were gone from 12:30 til 5 pm.

Maybe that's all we needed to do was up the meds that he's already on cuz they were to low.

And Max sure looked at us when we talked with him yesterday. I was in the back of the van with him and every time I talked he would look my way. And on the left side of him which is his harder side cuz we always come at him from the right side. Don't know why that is, I guess it's just the way he's always position and that right side is available to to walk up to him and when we feed him, we are right handed so we sit on his right side.

So we've been having (knock on wood) a good couple weeks. I should say Max is and so that makes us have them too :o)

We have to take each day at a time and really be thankful for these those good ones and not let the rough days get us down if they come around (keep your fingers crossed :o) and we still keep saying those "Thank you prayers" for what we have seen in Max and appreciate what we have with him.

When he was on that felbamate med and Max was just so miserable feeling,looking well that there really makes one appreciate how he was before and we really can't complain.

Well, I have to get Spencer up and going for school. He's doing well too I should say and we are very proud of him also.

Lisa

Sunday, April 17, 2005 10:26 PM CDT

Good Evening,

I was going to wait to update til tomorrow but realized I'll be gone all day tomorrow so better do it now.

Max has a pump refill tomorrow down in St. Paul so that'll take the day up. I'm thinking of downing his pump being Dr. Wical thought Max was so loose that day she saw him.

We tried that seizure med that had worked when we last tried it but it made Max sick to his stomach and he threw up all the time on it.

This time he didn't get sick but must've bothered his tummy or something cuz he just wasn't his old self at all. He started to show signs of getting stiff again (his arms stretched straight out) and he wouldn't eat some days and cried alot. Just very touchy when moved.

We really don't know if it was the med or his hip bothering him. But it sure seemed like the med cuz he was doing fine before we started it and even after xrays showing his hip was fine a few weeks earlier and he had calmed down when we thought his hip had a problem.

It's so hard to really know what hurts on him when he can't tell you. It can get so fustrated for all of us including the nurses. We just want him comfortable and seizures to go away but, we know he will always have some, we just thought maybe we could still cut them back some more.

I put new pics up of Max horse riding. This place is awesome and Max has riden 2x's now and he's gone for an hour each time.

The first ride Max was wide awake and looking around. He still has a long way to go with his torso/head control but, he sure seems to like it cuz when I had picked him up that day he had the crabby look and I told him he has to go riding whether he likes it or not LOL.

Well, once he got there and started riding his look changed to more of happiness and interest. And he did lots of verbal noises when asked to saying something such as telling the horse to walk on. Shari's son,Joe, was there to help which is so nice to have a guy for Max to interact with and Max would sure look at him and when Joe would ask Max a question he'd talk his "uh uh" to Joe.

Max played a little basketball with Joe while on the horse and some catch with a Beach ball.

This last Saturday riding Max slept while riding for the first 45 mins but the last 15 he woke up and seized quite a bit but we got some good expression from him and I think the smile that Grandma Congo got from Max last week came back again while riding. Of course I missed it cuz Max was looking the other direction.

I look forward going here and just can't wait for the day to come to see what Max will do from day to day.

So, I had mentioned that Max gave Grandma a smile. She really thinks it was a genuine smile cuz he didn't do the usual arm up and head turn with the seizure smiles that the he has. She also said it stayed for quite awhile. She said it sure made her day :o) So, I have to rub it in to Max asking him to make my day and give me a smile to see LOL.

Well, I'll let you know if Max gets back to his old self now that we stopped that seizure med. I hope that's what was making look so crabby and bothering him.

I thought I had more to share this time around but, it's not coming to my head at this time so. I will write again after next Saturdays ride.

Lisa

Saturday, April 9, 2005 9:57 AM CDT

Morning,

Maxwell has his first horse riding thearpy today so I'll let you know how it goes. I'm really excited and hope he's feeling up to it.

That felbamate seizure med is doing ok for him so far (not getting sick) but he does seem alittle on the crabby side and gets stiff off and on I think.

He also has a sore in his mouth like a kanker sore so he's been not eating (guess I'm glad that he does have that tube feeding available for things such as this).

This is what could be making him crabby also. I almost got a smile out of him yesterday. I was dancing with him with his arms and I think he gave me one of those half smiles that come and go so quickly.

This early warm weather is so nice, Spencer is getting excited for the end of the school year and I'm getting excited to get Max out and about in some fresh air and get our yard/garden cleaned up. OH, And those garage sales will be popping up soon too. Boys need some summer clothes I've found out. They've out grown all of theres from last year.

Well, I guess I should get going and stretch my muscles out so I can help get Max on that BIG horse.

I'll let you know how it goes and try and get some pics. Jim is going to video tape it and then after say 6 month video tape again and see if we can see a difference in how he's doing.

Wish us luck :o)

Lisa

Friday, April 1, 2005 7:21 AM CST

Morning,

I was going to put new pics up and only did the homepage cuz I screwed up on the eye color on the Birthday boys so I have to put that one back in the computer (glad I didn't erase them from the camera).

Well, we had a long busy week but it was a very good week.

We saw Max's new horse riding place on Tues. and this is going to be GREAT!!!!

Shari (the lady who owns the place and does the OT/riding with the kids) is so wonderful and uplifting. She's excited to work with Max and to get him going.

She did an eval on Max and had him flipped and flopped LOL. She was doing stretches with him, had him a one of those HUGE exercise balls. She even had him standing on his feet with Jim holding his knees and she was lifting Max up by the arm pits. Boy, Max is alot taller then one realizes (we usually see him laying down or in the stander which has him off the floor). He'd be even taller if he didn't have that curve in his spine.

It was so cute to the way she talked with Max telling him the rules there such as giving kisses when saying good bye, and that we must always have smiles on our faces cuz she said if you can frown Max, you can smile :o)

Telling him we have some work to do so be ready.

She wants to work on his head control, bear weight through his arms and get his hands opened more (which by the way after botox, his wrist and hands have been soooo much better and easier to get open).

So after all that she had asked Max if he wanted to see one of her horses. BOY, did Max's eyes light up. You could almost hear him saying "it's about time we got to the good stuff." Didn't know we had to do all this stretching and rolling around LOL.

So, she brought one of her horses in the arena. A beautiful tall, red haired (same color as Max LOL) horse. Can't remember her name though. This horse came up to Max and sniffed him out and nudged him some.

Max sure was looking at her. Then Shari let the horse run in the arena and Max watched her prancing around. He really really was looking at her and of course all the other exciting things around there (toys she has).

So we're very excited to start in the next couple weeks. Max will be on a big horse (Toby was a smaller horse). And Shari will ride behind Max so she can do more with him while up there, stretches, letting him rest on her when needed, work with his head.

She also told us some wonderful progress some of her kids have had with CP and that we could video tape the rides so then Max can watch himself on TV. That would be neat huh?

Then on Wed. we saw Max's nuerologist DR. Boy, we weren't ready for what she had to say.............

She just couldn't say enough on how Max has progress so well in area's that she didn't think he would. Such as his posturing at night which has stopped, his being able to be out and about in loud crowds without getting upset and going stiff on us and getting red blotchy skin and snorting (you'd had to see what I'm talking about to really know what I mean I guess).

She was happy to know he stayed healthy all year without even a cold, and eating allll his meals orally with no trouble (When you read this all knock on wood for me for extra protection or say a small prayer thanking the Lord for these things cuz you know Murpheys law, I'm saying them out loud LOL)

It was really nice to see her excited about how Max is doing and actually saying he has progressed in his own way and feels that Max is doing this all himself cuz his pump is turned down really low for his muscle tone and he's still really loose (I would like to have it turned donwn more but not now and I'll explain why soon here)

He not on any meds such as valium to calm him, his sleeping well and at appropriate times (night time and staying asleep through the night with naps in the day)

He's alert and we told her how Max is recognzing where he has pain. I told her about that PT session if you remember where Max was just touched on his foot and winced knowing that the PT lady had just stretched it and it hurt.

But those dang seizures are still a problem of course so now we are going to try a seizure med that we had tried before and it really worked but it made Max sick to his stomach.

She thought that now that Max's tummy is tolerating food so well that maybe he can handle this med. It can also cause hyperness so if he starts to posture or go stiff we'll stop it (if he pukes we'll stop it too). Being he's not doing any of these things at this time, we'll know for sure that it's the med and not just him.

Like I said we saw a big change in his seizures with this med at the time so we hope that it works this time with no side affects and then we can get rid of one or more of the other meds.

So it was a win, win, win week for Max and us and we are so happy for him shining through and having others see Max for who he is and how far along he has come and the potential he has to progress further.

Like his Dr said he hasn't made GREAT gains but yet he has made GREAT gains for him. From what he was in teh hosp/rehab to where he is now and what could be due to his brain damage, he really really is doing well.

So Thank you, thank you, thank you, for all your prayers and support.

We truly are blessed for what we have in Max and know that there are more wonderful things to come his way.

Lisa, Jim, Spencer, Max

PS, we had a wonderful Easter/Birthday party. I'll have to get pics up for you to see and see how beautiful little Gracie is. She's growing so fast.

Friday, March 25, 2005 8:23 AM CST

Good Morning,

Just wanted to wish everyone a Happy Easter and to thank all of you for your prayers for Max and our family, your wonderful uplifting guestbook entries, and for letting me know that Max's website still offers support to others in many ways and in ways that we may never know.

Your Prayers, love and support has been such a great strength to us through the years that I don't know how we would have made it through all that we have without out them.

We feel we are in a very good place with Max (thought I must add that we are not giving up for more better things to come with Max in his progress :o). We are very pleased with his health, his cares he receives at Sugar Lake and how he has shown us that he is a fighter and that he doesn't want to give up.

He's shown us so much more in our faith,.... oh, I can't even put it into words what he has done for us in these last few years LOL.

We have just really done some heavy thinking since his accident.

Well, I guess I just really wanted to say thanks to all of you again and that all of you have a very special place in our hearts.

GOD BLESS,
Lisa, Jim, Spencer, Maxwell

Saturday, March 19, 2005 5:40 PM CST

Good evening,

Finally a weekend with no plans or last minute running so I was able to clean the house that was long over due. LOL.

I'm going to try and put up some pictures of Max when he was a baby being his Birthday is Tomorrow (Sunday the 20th). (I was having trouble getting them up just now so will try again).

He's going to be 8 years old already. Hard to believe it. I've been doing alot of thinking about him this last week while we were doing our running around to appts.

I found myself pretty sad most of the time when working (being I work alone and have noone to distract me from my own thoughts LOL)

I think Max's birthday is harder on me then the day of his accident.

But I won't go into my feelings cuz it'll just make me cry and I really don't feel like crying anymore over my thoughts.

So, Max had botox done on his wrists to help with loosening them up again and his fingers. My plan is to keep this up every 3 months to see how well it works for him cuz his wrist just go back to the stiffness they were when I stop having the botox done for him.

Wed. we were to meet the New horse riding Lady and see her place and have an evaluation done but, Max,on Tuesday, and that afernoon/evening was crying out off and on showing signs of pain in his hip (the one that he had surgery done on) So, we ended up in the ER to have xrays done.

They showed that all was fine and Dr. thought maybe a pulled muscle. Shoot, the roads are so bad now that Max just Bounces around when in the van so his bottom and hip probably were sore (Mine was after all that driving around LOL).

He's been doing fine the last few days now with no grimacing looks or crying so maybe that was it.

We are going to reschedule for horse riding.

Tomorrow we thought we'd take Max to see the movie "Robots". Then Back here for Ice cream cake.

Seems I thought I was going to write more but, guess not. Maybe cuz I had tons of stuff I wanted to share about my thoughts of Max's birthday but skipping it cuz I'm past that now (thought it over so much that I helped myself get beyond it LOL).

I guess I just can't think so hard about the past and what could have been and what it maybe would have been like now for him for not his accident and just think about what is going on now for Max and what we can work on for him to help him in anyway to reach some goals that we would like to see for him.

Enjoy what we had with him then and enjoy what we have with him now.

So, I guess I will work on those pictures and see if I can get them up on the site.

Take care,
Lisa, Jim, Spencer and Max

Monday, March 14, 2005 10:30 AM CST

Hello,

Just a quick update cuz I'm looking at the calendar for this week and I'm looking pretty busy. Always that way, I can go for a few weeks with nothing on the calendar then there's that one week that is just crammed.

Today I'm just tiding things up around here (the house) and running errands/bills stuff like that cuz tomorrow Max has botox done on his wrists so that we can start to see if we can get them loosened up some again.

Then Wednesday we meet with this new horse riding place for an evaluation. Max's pump Dr. (baclofen Dr. that deals with Max's tone) gave the ok and wrote an order for Max to have out patient OT (occupational therapy) for his wrists and horse riding.

She wrote it for 1 time a week for like 3-4 months. So, it's a start and if all goes well we can continue there and see how Max does going all year round with no stopping.

I think that is my most curiousness (is that a word? LOL) is to see how this horse riding will affect Max when able to go year round.

Then on Thursday I have to do my 2 daytime cleaning jobs being I'm busy with Max Tues and Wed (I usually do one on Tues or Wed). So with those 2 jobs that'll take up my whole day there.

Laurie and John stopped by with their little granddaughter "Gracie" yesterday. Boy, she sure is growing and just a talker and gigglie one. Can't wait for her and Max to get together. They both say "UH UH". They can chat a up storm together LOL.

Of course she says a little more but I think maybe just maybe Max can pick up on some other words from her :o)

We'll see her On Easter Sunday with Max and the whole gang for an Easter/birthday party.

Well, the morning is flying by fast and I have to run.

I'll update at the end of the week to let you know how all goes with Max and his botox and the evaluation at the riding stables.

Lisa

Sunday, March 6, 2005 2:04 PM CST

Man what a gorgeous day today. Wish it would stay this way now til next winter LOL

I was able to go outside and get those Chirstmas lights down finally.


Well not a whole lot to say this update.

Spencer did super good on this report card. All his grades that were good from the last report card stayed the same or he got better grades and he's improved in his organization, getting schoolwork done on time, stuff like that. Spelling was the only bummer but heck, we told him he improved in so many other area's that the spelling wasn't a worry and that we'll work harder. So far he's been doing well on his tests.

Max has been doing well. Just waiting for his appt with his neuro to come up so we can talk with her. It's been so long and would like to see what we can do to help with his seizures.

He has those spots, that he had on his back awhile ago, on his face now. Not as bad as his back. Just two and one is almost gone. Must be cuz air gets to them where on his back with his TLSO and clothes, always warm and couldn't dry out.

Max's nurse has found a different horse riding place just a few miles from Sugar Lake. I'm going to check into it for a few reasons.

1. She has ways of having ins./MA/ or his cac waiver to pay for it. If I can get a Dr's order for outside therapy she'll do physical and occupational therapy on him and then horse riding. She has a theapist to do this.

This would be great cuz horse riding is getting so expensive that I just don't have that kind of money.

2. With the gas prices going up and sounding like it's not going to get better, this is only like 5 miles from Sugar Lake.

I'll have to call her and talk with her Monday and see the place and all.

I was talking to Max today while he was asleep and he's so cute cuz I bug him and his lips form into that "O" like he's just ready to yell at me to leave him alone. He's sleeping. Then he'd "UH" at me.

Then Jim bugged him to the point where he did wake up. But he had to have all those seizures that he has once he wakes up.

We have the March birthdays coming up for Jeremiah, Ez and Max. Can't believe Jeremiah is going to be 21, Ez 18 and Max 8. I'm feeling alittle old here LOL.

Oh we got some really cute pics of Max today that I'll put up. But, I noticed and heard from Joanne and Jim (his computer at work) and mine actually, that the front page pic isn't showing and the page with the 3 pics don't always stay up and then my captions look goofy cuz they don't match the pic.

I figure this must be from the website if others are having trouble and not my computer (for once finally LOL).

So, I'll try some new ones and see what happens.

Other then that. We're just waiting for warmer weather again. The winter actually went by pretty fast being it wasn't much of a winter. Guess we could still get blased with one more big one but being March I hope not. I've got plans to get Max out and about this summer.

Take care, It's Sunday, time to be lazy
Lisa

Wednesday, February 23, 2005 8:43 AM CST

Good Morning,

Sorry about not getting new pictures up yet. Like I had said my computer isn't working that great and it's kind of a hassle to get them sized right and that. Downloading takes forever.

We had a good Saturday with Max. We all went to Walmart for some groceries and I think Max enjoyed getting out and about. We ran in to a couple people we hadn't seen in a long time and they thought Max and Spencer are growing so tall and very handsome boys (which we've always have known cuz their parents are so good looking LOL). I get a kick out of when they see Spencer and we tell him he's 10. They can't believe he's so tall for 10 years. Their mouth drops open and eye's get big LOL.

Max liked my newly painted kitchen and decorations. He was looking at all my new wall hangings and stuff. He sure seems entertained when home. Wide awake busy looking, looking, looking.

Gave him a hair cut and bath. He didn't give me a crabby look all day which made me feel better.

We had Max's meeting yesterday with the school teachers and Max is doing well in his schooling.

We have noticed how he's more tolerant of being out in public with lots of comotion going on (where at one time he would get upset and stiff) and being around lots of noise (such as our Christmas party LOL). He also tolerates his therapies with the school teacher where they had said he used to fall asleep before. Now he stays awake for them the whole time.

We also talked about how Max is able to show us his preferences and choice such as he will look at red/yellow colored things and not at the others. I was talking to his nurse and we had noticed Max in wanting to eat and not. He will just not open his mouth to eat and bite down on the spoon and at other times just gobble up his food.

I noticed he shows us well.... how do I say this. He looks fine and has no expression on his face but when we talk and get into something he must not like (such as talking about him to much/ his bowel movements and his having a emisis that morning LOL) he all of a sudden will have that brow creasing face look. This happend twice that I had noticed. Kinda like... can we change the subject now...

The goals for Max will be to see smaller objects cuz we know he can see the bigger ones and picks them out such as the things on my wall. He would look around then stop at one picture, stare at it for awhile then look at another....

To try and show prerefence in 2 different objects with his switch. The teachers say he grasps the switch but doesn't move it to pick and choose. They are hoping with his eyes he will also try to show a choice more then he has. Just hasn't been consistant.

Head control will be a goal also. He seemed to have had better head control in the past. Not sure if having surgery last summer had made him loose this and not being to ride Toby much. Hoping this summer he gets LOTS of riding in.

I know theres more that I'm forgetting about the things he has done and more goals.

Oh that thing I was talking about before. Max was lying down on his bed and they had just given him a suppository and I didn't know this at the time. Max was just talking up a storm to me and I thought this was interesting cuz I hadn't heard him talk so much (ya know his uh-uh's in different tones and some long and some short). But he also had a hold of my finger and I would feel him squeeze it hard and then let loose. I thought this too was interesting for I've never felt him squeeze my finger.

Then I smelled somthing and thought..OHHHH... so I had asked about the suppository and sure enough he had one so he was working hard to you know.....

Then I realized he was doing alot of pushing LOL. And he was probably trying to tell me to leave cuz he had bussiness to do and here I am babbling away to him.

It all made sense to me then.

So, I left feeling really good after the meeting with the teachers. They had said too that they feel really in tune with Max so that they do see changes in him and see that he can show us in his own way that he can make choices, and how he's feeling at that time.

I appreciate how they are working so hard to come up with different things for him to try and not giving up on him to advance in anyway he can so that we can communicate with Max.

He's staying nice and limber (except his wrist which is something to work on also and I'm having botox shots this month on him to help loosen his tendons)

We have so much to be grateful for and I do say my prayers thanking the Lord Jesus for all those who help Max and work hard to bring the most out of him, the nurses who do such an awesome job caring for him and working with him.

Ya know I haven't cried in a long time about all this except for a few times when I thought about him when he was 3 and the sound of his voice and his running around. Then I have to think about now and how fortunate we are that he is doing well beyond what the Dr's said he'd be doing.

He's such an adorable young man and I tell him everytime how proud we are of him and how strong he really is way beyond just muscles that he used to show us in his arms LOL.

I told him to never give up cuz we aren't and that we will always keep working with him to help him get stronger and to help him learn more and more and that he has to help also to work hard to cuz it will be/has been worth it and it sure has shown (his hard work).

And I want to thank all of you for the support and prayers for Max. I know they have been a BIG part in his progress and staying healthy.

GOD BLESS to all of you,
Lisa

Wednesday, February 16, 2005 8:38 AM CST

Good morning


Sorry it's been a while since I last updated. Last when I told you I was going to bring Max home for the Saturday, Jim and I ended up feeling like we were coming down with something and Sunday we did end up getting nasty colds.

But we are definatly getting home this weekend. Max's hair is getting so long. He needs to get it cut asap LOL.

So, After this weekend I should have some things to write when we can actually spend some decent time with him.

I didn't see him the week I was sick and then when I finally got out there he just gave me the crabby look the next few visits. I guess I rough him up to much with bear hugs and kisses and he's letting me know he's getting to old for that stuff LOL.

But he didn't seem to mind me bouncing him on my knees thought. He would start to smile and then go into those smiling seizures and when those would stop I would try again and he'd go into a smile and the seize again.

It was interesting cuz he was having different looks on his face that I only see when I do this bouncing things. So, riding on Toby should be interesting this year (Speaking of that I have paper work to fill out and get Dr.'s ok and I have to buy a helmet this year..... I better get my rear going on that).

School says he's still doing well with his looking purposful at objects.

Ok, so I'll update next week. I'll try not to let it go so long again. There are just days I don't know what to say LOL. I'll work on new pics too.

My computer still isn't working the best and I haven't tried pics yet since it's been acting up. Scott is gonna try to fix it but I have to buy a hard drive and then figure a time that works best for us to fix it (and if that's the problem even).


Stay warm, I heard we don't have any nice 40's coming at all this week.

Friday, February 4, 2005 8:10 AM CST

Good morning,

Just a quick update to let you know that I'm having BIG TROUBLE getting online so if I don't update for awhile that's why.

I really don't have to much to say otherwise. Max is doing well.

He had his TLSO adjusted last Tuesday so it seems to fit better. The guy fixing his TLSO asked Max a question and Max seemed to answer. He made his Uh uh sound as if to say no to his question (can't remember what he had asked him).

I also noticed while Max was laying down there, his armed had moved, I don't know if he was moving it for some reason or if he was going to have a seizure. It sure did seem like it. I didn't say anything to anyone cuz it was just a move that caught my eye and then he stopped moving it.

There are some days where Max has those big seizures and then some days where he doesn't seem to have many or any.
We see his neuro at the end of March.

We are also having a play day with Max tomorrow (This Saturday) so I'm excited about that. I told him I need a good 4 hours of kissing his face and telling him I LOVE HIM!!! Then who knows what we'll do with the rest of the day LOL.

It's been so nice maybe we can take him for a stroll outside and get some fresh air if Saturday is nice out.

Other then that. I'll try and update after Saturday if my computer will let me on. It's a struggle and I don't know what to do anymore about it (throw it out the door I guess :o() I don't dare use my smilies like last time afraid I loose connection. I'm really afraid of loosing all my pics I have on my computer too if the whole thing crashes on me.

Have a wonderful day. I heard it's going to be like 50 out. Good day to get the ice off our drive way.

Thanks for the guestbook entries and the continued support for all of us. We love to read them and still feel Max is trying to gain progess in just what we see and feel he will make some gains. Just a heart and gut feeling I have :o)

Lisa

Thursday, January 27, 2005 7:46 AM CST

Good Morning



We are having a good week I'm happy to write. All though I found out last week that I can't go a week without seeing Max cuz I cried on the way out there when going to see him Tuesday.

Tuesday was the day Max's teachers were all out there with him and I was impressed with (of course them) and how Max responed to them. Wish I had the camera.

Max was in his stander and it's hard to explain what they were doing with him but they have this big light board and can put different sheet of colors over it and they always said Max likes the red and from what I saw he sure does like the color red!

I told the teachers that when the kids were small Spencer always had to have red of everything (popcicles stick out in my mind the most) and poor Max had to have purple and Spencer would say purple is his favorite color. So I guess Max is claming his color red back LOL.

Funny how he wouldn't look at other colors but when red came up in anything they used he would look at it.

I also noticed how when one teacher would talk (they were standing on each side of him) Max would turn his eye's over at the one talking and when the other would talk he'd turn his eye's over to her.

He was very alert so it's good they show up at 3:30 in the afternoon other then 11 am cuz he sure likes to sleep then LOL.

Jim was seeing Max yesterday and telling me also how when the nurse went to get Max a blanket (Jim was holding Max) she had shook the blanket to flatten it out and then laid it on Max's legs and Jim said Max had that crabby kinda look and looked right down at his legs as if to say "Hey what are you doing?" I can just see the look that Jim was explaining to me and it sure makes me smile thing of it.

Max sure has gotten so aware of what is going on and actually (at least to me) showing some expression with it.

Jim said he thinks he got a small corner smile from Max while try to tickle him.

Can't wait for spring and summer to get here (hopefully early the way we've had somewhat of a warmer winter) so that we can get him out and about.

Oh, I had to write back to that naked juice company cuz I never got the coupons and they obviously forgot about that special thing they were going to do for him too so, I don't think they are following through with what sounded like they were doing something special.

I did find a cheaper juice that is just like Naked juice so I'm seeing how Max likes this kind LOL.

Thought I had more to say but that seems to be about it. Still trying to get an appt with Max's nureo and his PT teacher said his TLSO brace isn't fitting right. Makeing him stand terrible in the stander. The TLSO isn't fitting his chest right so his shoulders fall forward making his head go back to far.

I'll be working on putting new pics up soon here. There of Max in the stander doing some things that the teachers ask the nurse to work on with him.

I hope everyone has a nice weekend

I'll update soon again,
Lisa

Friday, January 21, 2005 7:56 AM CST

Good Morning,

You can tell it's winter. I don't have alot to say cuz we don't get out and about like we do in the summer.

Max seems to sleep alot in the winter. Guess I can't blame him. LOL.

I've been trying to get a hold of his Neuro Dr's nurse for a appt with the Dr. I had two scheduled but I keep telling them I can't get there at 9:40 am cuz I have to get Spencer off to school.

Max had alot of seizures last night when Jim and Spencer were there. Jim said the seizures seemed different. The nurse said he doesn't have them any other time other then when Jim is there talking to him LOL. Wonder if it's the tone of Jim's voice or what?

Monday I was able to catch Max in the stander and he was awake off and on. He did some good eye tracking with the ball that we played with. But other then that he was sleepy again LOL. I just don't understand the sleepiness so much now.

I guess he's awake more in the late afternoon into the eve. But he sleeps well at night and doesn't need any help from meds to fall asleep.

If this warmer weather holds out, We'll get him home more on the weekends.

His teachers are all going to be seeing him next Tuesdays so I'm taking Spencer out of school early so I can go out and see them work with him (they see him right when I have to pick spencer up from school so I don't ever get to see them working with Max).

In Feb. we have his triple IIIP meeting where they talk about how he's been doing the last years and his goals for the next few years. I really really like these teachers. They are so much more detailed as to what to do with him and change things around for him so he and the nurses don't get bored LOL.

Hey speaking of school. Spencer has been doing way better now. His mid-trimester report card shows that he has improved in all his classes except one. And his organization is at grade level (wish it was at home LOL) and getting his work done on time (in school) is above grade level. I think this report card is a framer :o)

I have to get Spencer going for school here so, I hope to have more to say next update. Like I said, it's winter and not much happens around here LOL.

Lisa

Thursday, January 13, 2005 7:30 AM CST

Good Morning,

I hope everyone is ready for the COLD we are going to get (well, if you live here in MN). I've got some errands to do I should have done earlier this week when it was warm out. Oh well.

So, Max had his eye appt yesterday and we learned some more things about eye's LOL and Max.

I always thought we just see with our eye's (ok I knew that wasn't true but really don't think about it) and that really our eye's are just windows for our brain basically. I forget how much our brain is what really controls EVERYTHING.

All in all Max's eye's are healthy and working fine. The Dr did see some damage in the optical nerves but can't say for sure what kind of damage is beyond that and then there's the optical lobe which we had heard from the ICU Dr's way back that there was some damage there. How much? No one can say for sure.

Then the processing of what we see goes from the optical lobe to other parts of the brain (which we know Max has global damage so who knows where those processing parts are going to him from there). So things can look blurred or deformed to Max cuz of damage in these areas and glasses can't fix these probs.

He feels Max is seeing a good picture though going to the optical lobe. What he sees from there is anyones guess.

He said we should really just go off of what Max shows us and that is what would tell us the most about Max and what he can see. We've been told this before too from other Dr's re: Max showing us what he can do and go with it :o)

When I was working last night, I was thinking of some things Max has done to show us he sees well and one thing that stuck out in my mind was taking him to walmart and showing him toys. The flashing light baby toys he wouldn't even look at and would roll his eyes and look away as if to say "ah mom, there baby toys" and would look back at me and see I'm still trying to show him and then look the other way (still showing me those baby toys huh?) (cuz he was never a baby. Always a bigger BOY he said :o) But when I took him to the cars and trucks he sure did look around in that isle and would look at Spiderman whose eye's lit up and talked.

He tracks the lights we have for him at night and watches them so well and then TV. What kid doesn't watch tv? And he seems to love Spencers Sonic games with the bright colors and fast actions.

So it was a good Dr's appt cuz not only did we learn more about eye sight like I said but it made me also think more about Max and how far he has come from what they said he would not (most likely). And how grateful I am for still having him here with us even though he didn't come out of this accident like we had hoped.

I have more to write so hang in there with me :o)

Last Friday Jim was seeing Max and talking with the eve nurse and they got on the subject of Max and being stiff and all after his pump was turned down.

One thing very interesting to me that the nurse said happened a couple times when feeding Max was that she said Max lifted his arm up and pushed out as if to almost say "I'm full". She said he's done this a few times when feeding him on different days. I thought that was really neat and hoping he does it more and more. Waiting is the hard part and I'm trying to get him to do it LOL. Guess it's up to him.

Another interesting thing that happened last week was .....well ya know that naked juice that Max drinks. I think I've told you about it. He likes it and it's helped him have bowel movements when he first started drinking it. Well, the experation dates come up quick on them and the nurses had called and they said they prefer that you drink them by that date.

I emailed the president of the company explaining Max's (situation? ) and told him how Max likes their juice and that it's thick enough for him to drink and to excuse my bluntness but that it helps him to go number 2 LOL but that it gets expensive to buy cuz they expire fast and was wondering if he could send me some coupons. (I never see this juice advertised or coupons for it)

Well the president wrote me back saying the coupons were on the way and that they were so moved by Max's story (sent them the website also) that they were planning something special for Max and couldn't tell me now but that in the next couple weeks we'd hear back from them. Also that I was to keep them updated on Max and that there are people at their office keeping Max in their prayers.

How neat is that huh? I was just looking for some coupons. I haven't heard anything yet so If/when I do I'll let you know what they've planned.

Well, there I think I got all that out of my head LOL. If I messed up at all it's cuz I had a cat on my lap most of the time LOL. She wants attention so bad in the mornings.

Take care, GOD BLESS and stay very warm these next few days,
Lisa

Monday, January 10, 2005 2:36 PM CST

Hi,

I thought I had written earlier and see that it didn't go through.

What I wrote was that I was going to update and decided to wait til after Wednesday cuz Max has his eye appt so then I can let you know how that goes.

So I will see you all on Thursday :o)

Lisa

Sunday, January 2, 2005 10:35 AM CST

HAPPY NEW YEARS TO EVERYONE!!

I hope everyone had a nice New Years. We had a good time. Went out with Laurie and John and the Howard Lake gang.

Glad the evening was nice and not like New Years day. That nasty.....what do you call it? Wasn't snow and not rain but those hard little freezing pellets. Very slushy driving. Took Spencer to walmart for some more money spending of his.

Today I really want and have to get the Christmas tree out of our house. You just touch it and the needles fall off. By the time I get the stuff off the tree, I'll be throwing a stick out the front door LOL. Seems like I just put all this stuff up not so long ago. Keeping the outside stuff up though. To cold to be messing around out there even if the sun is shining.

Maxwell is doing well. I think I'm done turning his pump down for now though cuz he seems a little tight in the legs. Or he was just resisting me when I was bending them. He seems to alway have this crabby look on his face still LOL. Wonder what that's all about. Don't know if he's crabby at us or if we just interrupt his nap times and he's mad about that.

The nurses haven't heard of any school appts for this coming month yet. I have a Neuro appt with him coming up on the 10th or the 17th. They changed it but keep sending me both appt dates. I need to get that straightened out and the time cuz they have me down way to early in the am. I have to get Spencer to school.

Then there's the eye appt that I'm looking forward to on the 12th. Seems all his appts pile up in the same week.

So now that the holidays are done we can get back on schedule with the norm stuff.

I'm hoping that this will be Max's year and that we see some (hopefully) big improvements but, of course we will take and love to see those little ones too. They add up to big ones :o)

We also would like to ask if you could say some Prayers for Grandpa Jerry and Grandma Karen. Grandpa Jerry went down to Arizona for a few months and no sooner did he get down there he had to go to the hospital and start dialysis.

We talked to him and he sounds good and says he feels so much better after a dialysis treatment. But you have to go 3 times a week for like 3-4 hours so it does take up alot of your (his) time. I clean a dialysis building so I kinda know some things and know what the machines look like. Amazing how they came up with these machines to clean out a persons body.

Our bodies are an amazing thing as to how it all works to keep us going. Guess one never really thinks about it till something happens and you loose functioning body parts.

You really have to thankful, to the Lord, everyday that you can get up and out of bed without any problems. That's one thing we've learned for sure.

Thank you again for your prayers and continued support for Max and for prayers Grandpa.

Lisa, Jim, Spencer, Maxwell

Monday, December 27, 2004 12:39 AM CST

Hello to you all,

I hope everyone had a wonderful, relaxing Christmas.

We had a blast here. Everyone was able to make it and seemed to have a good time.

Max did so well with all the comotion going on. He looked crabby when we brought him home but I had a talk with him and once we started to open his presents he seemed happier LOL.

We played a dice game for gifts this year where you roll doubles and you pick a gift. Then once the gifts are all opened and shown, you place the game again for 15 mins passing the dice around trying to get doubles and when you do you get to steel a gift of your choice from someone.

Man I tell you, Loud, lots of movement and Max just sat there calm without getting upset through all that. So we were glad to see that.

Little Gracie was here alss (Ezra and Ambers new little girl) She is way cutie in person let me tell you. Max wasn't to sure about her at first LOL. Wrinkled his face at her. We tried to get a pic of him and her but didn't get a good one (maybe someelse in the family did). she's so tiny that was hard to get them together. I guess if we had worked on it harder we could have laid them on the floor together but not much room with people and chairs all over LOL.


Max slept pretty good at night. Fell asleep around midnight but then woke up crying around 4am. Don't know why but after repositioning him and talking to him he seemed fine and went back to sleep.

He slept hard all the next day (that's the picture I put up on the front of the website). I couldn't wake him up for nothing and if he did, he didn't stay awake for very long.

So, we didn't get Max to walmart to spend some of his Money he got for Christmas (Had to get him back to Sugar Lake cuz I had no more formula to feed him and it was getting passed lunchtime and he wouldn't stay awake to eat orally) Most of his money is going to horse riding but thought he could get one thing at the store.

So today I'm having a do nothing day. I should do somethings but Slept in and felt in the mood to be lazy. Like Joanne said to me Yesterday, I really have to thank the Lord for Sugar Lake and them taking such good care of Max cuz he is alot to care for and just having him for a couple days (and overnight) wears me out. Just the worrying about him can poop a person out(if I leave the room that he's in to long, sleeping at night, stuff like that) I do (Thank God alot for this)and appreciate them for being there and so close to our home.

Well, one more weekend to go of celebration, I hope everyone has a nice New Years.

Lisa

Tuesday, December 21, 2004 8:46 AM CST

MERRY CHRISTMAS,

I guess this is my Christmas update and I'll update again with Christmas pictures next week.

I see we have some snow finally for Christmas. I wouldn't mind alittle more so the brown goes away.

I had an early appt with Max in St. Paul yesterday to get his pump refilled and have it turned down some. But, from what the news was saying about the roads, I was able to make the appt later in the afternoon but, I still was late getting there cuz everyone was driving slow (which I guess is a good thing). Spencer school was 2 hours late also and I was almost going to pull him out of school so I could make this appt but didn't. I'm glad we did keep it though for yesterday and not switched it to today cuz the roads look nasty today too.

So we made it down there and back. Max looked Crabby the whole time up until we started to heading back. The nurse even said that when she see's Max's he looks cheerful but this was the first time she's seen him looking crabby.

We had Max home last Saturday for a haircut and whirlpool. He sure talked up a storm when we got him here and laid him on the recliner looking at the Christmas tree. Kinda cute to hear him being so verbal and for quite a long time and getting louder.

Jim had his 39th Birthday last Sunday. Can't believe he hasn't hit 40 yet. Seems like I've been in my forties for ever.

I should have more to update on after Christmas is over and things go back to the norm. I haven't heard from Max's teacher lately on how he's doing.

I hope everyone has a wonderful Christmas.
Lisa

Saturday, December 11, 2004 5:10 PM CST

Hello,

I don't have much to update on. I finally got some pics of the boys together for their Christmas pics. Don't know if I'll do cards now but will print out a bunch to give to people.

Spencer has been feeling really good all this last week with no temp or stuffy nose so back to school on Monday for him.

Jim went out to see Max Thursday eve and I guess the nurse said that Max was doing alot of talking. Not just his uh, uh's either I guess. And she said his lips where moving alot like he was trying to form words.

Now when Max does the Max talk it's usually when he's laying down and he keeps saying "uh, uh" but she said during supper and after supper while sitting up watching tv he was making different sounds other then the usual.

Jim said he was kinda doing this also when he was there.

Of course when I went out with Spencer on Friday afternoon he was sleeping. But I told Spencer to come over and say HI to Max and Max tried so hard to open his eyes. So Spencer kept talking and Max would look, then fall back to sleep until finally he had a big seizure then he was more awake but we kept talking to him and he stayed awake then :o)

So that was neat to see Max respond to Spencers voice and to actually open his eyes. He must've been tired though cuz it was hard for him to open them. I know how he feels, come Sunday eve trying to watch TV. I can barely keep my eye's open. Ok, I don't. I just fall asleep and miss the show or movie that we're watching LOL.

I'm adding this in late cuz I forgot about Max smiling for me (I think he was :o) I was asking Max to get ready for me to take pictures of him and Spencer and to show me his smile. After a couple times of asking him he curled his lips back,kinda like little kids do at first where their lips go back and down more then up. Well he held this look long enough for me to turn him around to show the nurse and then this look went into a yawn so I don't know really if he was smiling or just going how he was going to yawn or if the smile made him yawn. But it was a different look he made. Usually he just yawns when he does with no lip movement like this one. So, I'll take it as a smile :o)

So other then that I guess I just wanted to get the new pics up cuz I really like them.

I hope everyone is ready for Christmas cuz it's coming up fast.

Take Care,
Lisa

Sunday, December 5, 2004 2:30 PM CST

Good Afternoon,

Just having a lazy day today, doing some house cleaning. Need to have at least one lazy day out of the week :o)

The pic on the front page is us going to find our Christmas tree. Jim took some neat shots out there that I'll put up sometime. This one isn't so good.

Not a whole lot to update on this time around. Max is doing well. My weekdays are getting filled with extra cleaning jobs and trying to get Christmas shopping done (so I don't have to fight the crowd on the weekends), Dr's appts. Got my kitchen painted this weekend (well, one coat)

I made an appt for Max come Jan 12th to check Max's eye's so, I'm excited for that to see what they say and find out for us. I'm not hoping for any problems. It would be wonderful that his vision is 20/20 and that he see's just fine with no weird deformaties. Then we can at least rule out eye problems for him and if he does have any trouble seeing then we can get it fixed and see if things improve for him in anyway.

Last week on one of the days I was out there, I was talking to his nurse while holding Max and she laughs and said look at Max looking at you. He was just staring at me, really listening to me babble away. When I looked at him he looked back at me for a sec and then turned a looked away kinda like I caught him staring at me and he didn't want me to see that LOL.

Remember I was talking about getting a Christmas pic of the boys to send out to family and friend (but last weekend we left our camera at Lauries house)? Well, guess I won't get to do that this year. Spencer came home from school last Monday not feeling well so we kept him the next day, then the next, then the next.......about Wed. is when he was spiking a temp and it would only stay done with Ibuprophen (sp?) but when that would wear off it would go right back up. Took him to the Dr. on Friday to find out that Spencer has Mono.

Geez now we are looking at a couple weeks (hopefully one week)of him being out of school. Hard enough getting him to do homework for just that day, now it's piling up and he has to try and get caught up while not feeling well.

Here I just got over pneumonia finally like last Thurs and now Spencer has this. Good thing Max is out at Sugar Lake :o). Keeping him healthy out there. But I don't dare bring Max home to try for those Christmas Pictures of the boys. Don't really know when it'll be safe to get him home here being this Mono can last so long.

Got new pics. I'm going to put up pics of the baby Gracie and Ezra, Amber. I have to tell ya the pictures are pictures that Jim took of the Pictures that Laurie took. So pictures of pictures LOL.

So, That's about it for now. I'll get working on those pics now.

Take care,
Lisa

Sunday, November 28, 2004 9:45 AM CST

Good Morning,

Man it just blows me away when I look at the date of the last time I've updated and see that 10 days has gone by already. Just doesn't seem that long ago.

Hope everyone had a nice Thanksgiving. We had a mellow day here at home cuz I had a building to clean that day in the afternoon. Then I had 3 days off and here it's already Sunday. We've been busy around here though getting ready for Christmas with the lights and tree. We went Friday to get our Christmas tree and it crossed my mind to bring Max but, it was rainy and cold and the MUD!!! So, guess I'm glad I didn't have him come with.

Today I promised Spencer bowling with a friend so, going to do that as early as possible so I can get back and watch the Vikings :o).

Had Max home Saturday to look at all our decorating in the house. Man he sure does look around. In fact he was so busy looking at things that he didn't eat much of his turkey dinner LOL. But he liked the mash potato's and cheese cake pretty well even though he had other things on his mind :o)

I wanted to get pics of the boys for Christmas cards but we left our Camera over at Laurie and Johns house on Friday. I'll explain why in a bit here.

Oh, but when I was talking to Max about the Christmas tree and lights, I would ask him to move his fingers if he thought the lights were pretty and sure enough his little thumb would move. He did this pretty consistant too when I would ask him any question.

We practiced head control some and also took (ok, I did LOL) alittle nap. I was laying on the couch with Max and we were looking at the lights on my window and outside lights (OK, I have lights EVERYWHERE) and I was so comfortable holding Max and talking to him that I conked out for about 15 mins. He probably thought "thank goodness she fell asleep, she stopped talking."

He did alot of talking to us also again. I was telling Joanne about his lips moving and I swear every time we talk to him his lips would start moving so make me wonder if he really is trying to talk and not being some dumb seizure type twitch. I seem to associate everything with a seizure now a days. Guess so I don't get my hopes up and then let down.

I know there was more to tell ya about him but didn't write things down this time like I usually do. Jim told me that when he was out at Sugar Lake to see Max, Jim would stand on Max's left side to let him know he was there and Max turned his head to look at him and then Jim went to the right side of Max and asked him to look over there now and sure enough Max made his way to look over there at Jim.

I think I'll have Max's pump turned down again even though it'll be right before Christmas (I hate taking such chances if problems come up) but, he's still so very loose in his arms, legs and his whole body there so, Be interesting just to see.

I'm also going to check into seeing what Max can see. The parents I talk to with other near drowns children, one parent did this and their child got corrective glasses cuz they said she saw everything kinda leaning and bent so when she got glasses to correct this her head control got better and her body aligenment got straighter. Cuz I guess when you see things bent over you go that way too. I think of Paul Bunyan land and that crooked house they had. If you've been there you know what I mean.

There's a place in St Cloud a friend pointed out to me and then I looked in the phone book and I think there may be a place here in town too where I could have his vision checked. Would be interesting to see how they do it. I know I've talked to my eye Dr and he said that it is possible but, he hasn't done it for so long and they must have new tech stuff out there since when he did it.

I'll let ya know what comes about with that when I dig farther for info on where I can get his eyes tested. We already know he sees well but just want to find out if his vision is distored.

So, the reason we left our Camera at Lauries is cuz we went to see pictures of the new addition to our family and we took pictures of the pictures to put on the web to show you little Gracie.

Ezra and his girlfriend, Amber had a baby girl last Tuesday. Gracie came out just fine and perfect in every way :o) 7 1/2 pounds I think it was.

She is soooo cute with brown hair and of course blue eyes at this time. May stay blue or turn brown. We're hoping they stay blue with the darker hair color. I Just love light colored eyes with dark hair :o)

Amber I guess did great through "IT" all (ewww memories of "IT" all LOL) and Ezra,John, Laurie made it out to North Dakota (where Amber's parents live and Amber is out there now for school also) to be there for her.

I'm having Christmas here so hopefully Amber and Gracie can be here also. And I'll get lots of pics of Gracie and Max and all the cousins and their girlfriends (Jesi, boyfriend coming? :o) and ......oh man, Jim needs to build an addition quickly. The family is a growing. We got a heater for the garage now (and Christmas lights out there) so we can shove some of them out there LOL. Just kidding.

Well, I have to get going cuz Spencer's Friend is going to be here in 45 mins and I haven't showered yet (like you needed to know that LOL)

Lets hope we get some snow for Christmas, then it can go away again and stay in the 30's, 40's til spring :o)

Please sign Max's guestbook cuz we still love to read them and of course love the uplifting messages some of you write to keep us going strong and to never give up. I was just telling Max this last night not to give up EVER! He's been staying so strong and working so hard at every little thing he does to show us he can do it.

God Bless,
Lisa

Wednesday, November 17, 2004 11:24 AM CST

Hello,

Man, What nice weather we are having. I'm having so many chances to get the outside Christmas lights up but have been busy and also went and got myself a nasty cold. I'm determined to get them up today though :o)

Max has been doing really well. He did alot of strong talking to to me the other day. I mean his UH,UH's were loud! He's been wide awake when we see him.

Jim was out there last friday and he was holding Max in the recliner. I guess the other boy in the house was crying and beeping (his oximeter) which this child does alot so not out of the ordinary but Jim said that Max would get the frown look (his eyebrows would crease) and look in that direction of the other boys room where the noise was coming from. Then when the boy would stop, Max would relax and just look around. This happened a couple times Jim said.

I guess my point to all this is that Max is showing expression in his face and is aware of what direction the noises are coming from. Thought that was pretty neat.

On Sunday all of us went out to see Max and the nurse was changing Max's shirt and Max was just crying away (not sure why) but, when we all went over to see him and I was talking to him saying "Open your eyes Max" "Mom and Dad and Spencer are here" He would open them look at us and then stop crying but close them again and cry. Then open them again and look at us and stop. This was way cool to see cuz then Max had this smile look on his face.

Jim and I didn't talk about it til we got home and when he mention it, I said I saw the same thing in Max and that somewhat smile look.

So you can imagine how happy Jim and I are seeing these things and giving us so much more hope that Max can and will some day show us more. And Max being able to let us know when he is being unhappy, hurting, fustrated or HAPPY.

Max had an appt to get his TLSO reajusted so it fits better. And then I took him to Toys R us. Had to get Spencer a recorder (we called them fluteaphones when I was in school) His broke that he had.

But Max sure liked Toy's R Us. He was looking all over but I didn't have time to laly gag around so we got the recorder and I got Max (I know Christmas is coming but....) this Bubba bear that talks to ya and he asks you to rub his tummy and I took Max's had and rubbed it and the toy would laugh. Max looked (and to his left which they say is his harder side) at this toy quite a few times. The toy has mirrior sunglasses which I think helps catch his eye.

So the school teacher should like this toy for him to play with :o)

Spencer had school conferences last night. He's grades are not to bad but the kids take this Iowa test and to our surprise and the teachers Spencer is well I write what the test says

Spencers composite national percentile rank of 73 means that he scored higher than 73 percent of fourth grade students NATIONALLY (ok I added the caps on nationally :o) His overall achievement appears to be somewhat abouve average for fourth grade.

And his reading comprehension is up there at 92 percent meaning that there is only 7 pecent of fourth graders nationally that are higher then he is.

So Spencer is able to do the work (which I guess we've always know) but he just doesn't like to. Also Spencer said that this Iowa test was no writting work all fill in the right answer (mulitpule choice). But he had to figure the stuff out in his head to get the answer we told him.

Now how does one get him excited about school?

Well, I should get going. My day is short cuz school started 2 hours later due to fog and I need to get those lights up before going to pick up Spencer from school. I'll try and get new pics up soon. It's that time of year when I have so much to squeeze in with Christmas and all.

Have a wonderful Thanksgiving day. I know we have so much to be thankful for again this year. Heck just making it through another year is a big accomplishment LOL. I think many of you feel the same :o)

Lisa

Monday, November 8, 2004 8:50 AM CST

AHHH Monday morning,

So hard to get going on these days. I usually like to take Mondays as my lazy day (in reality most of the week is my lazy days LOL).

Someone wrote in the guestbook about the northern lights last night. Of course us living in town and all the lights from Buffalo doesn't let us see lots of the neat sky stuff that go on from time to time.

Last Friday I went and had Max's baclofen Pump turned down and I had a choice to going to 114 micro grams or 112 (the amount of medicine that he gets in 24 hours. Break that down to hours and I think it might be like 4.6 micro or a little less per hour). I don't have the slip they give me telling me.

But I choosed the 112 and that's the lowest he's ever been and (knock on wood) he's doing well so far. They've always said if we see a change from the dose it would be in the next 24 hours. Not to say that something may change with Max himself that would cause us to have it turned up.

Guess that's why I'm not trying so hard to get the pump out like I used want in the past. Max still has to go through puberity down the road and I've heard stories on how some kids take a turn for the worse in some ways. Always have to play it safe I guess and think ahead.

Max has been noticably more awake during the day and has been doing better in school. Got another good Home visit note from his teachers.

Max is showing perefence with his eyes as to what interests him or not with lighted toys verses none lighted but noisy toys. He liked the spiderman toy I had bought him and looked in both directions at that and didn't look well at the lady bug once he looked at what it was. Guess he really is done with those babyish toys LOL.

They said they were trying the switches with Max again and that he grasps the switch well but I don't think he actually worked it from my understanding. Guess you have to start somewhere and grasping is good.

I would like to be out there when the teachers are there but they go right when I have to pick Spencer up from school. I could have Spencer take the bus and walk home (he would shuttle to the school that's close to us and then walk from that school home which isn't to far) but, with Spencer and having to check to see if he's got all his school work with him, I guess I should concentrate on his schooling at deal at this time.

My Great Aunt passed away this last weekend. So, I'll be seeing some family memebers I haven't seen in a long time. That old saying funerals and weddings is the only time you see family as we get older and get busy with our lives.

My Aunt was a very caring, kind person. I've been thinking about my childhood and all our family members and how often we seemed to have gotten together for various things. We had some really good times and I have very fond memories.

Can't believe Christmas is almost hear again and I should have gotten my outside lights up last Sat. when it was so nice out. I also better start ordering some things I plan on getting the kids so I get them on time LOL.

But, for the most part my calendar is pretty open so I can get out and hang with Max more and see if I can get him to show me somethings while he's awake :o)

Take care,
Lisa

Sunday, October 31, 2004 0:29 AM CDT

Good evening,

I just had to update even though it's late. Though daylight savings time is done as far as I'm concerned so it's only 11:30 pm.

It's just that we had such a good day today.

First I was going to tell you last update that the nurse showed us what the new Baclofen pumps look like and Max is due for a new one in a couple more years. They are way thiner so it won't stick out so much from his side tummy and they also will hold more medicine AND the medicine has been made to last longer so that means we don't have to go in every 3 months to get it changed no matter what his dose is at.

Ok that was old stuff. On to the new stuff.

Max did well with his teachers this last round. He was awake for one thing ( I think turning down the pump helped) and he was more responsive. They have a light board they use on Max and they would put different colors sheets on this board and he look would look at all of them except they said he didn't care for the yellow and when the teacher would shut the whole thing down he would quite looking all together.

They did some flash light things too and he'd turn and look in the light direction.

He loved his story reading. He'd look at the pics from the book. Then get tired and show signs of wanting to sleep. Reading a story is the last thing the speech theapist does with him.

Now Spencers schooling is a diff. story. Had the talk with him and he did fine for 2 days and then fell through again. More talk with him. We'll see what happens now. It's such a long story with him he could have his own website LOL. He just needs to do his work cuz he and everyone knows he can. He showed us that.

We took Max to buffalo's halloween where the stores hand out candy. This was fun. We went with Max's nurses daughters ( and their PCA, personal care attentant). It was crazy but Max did soooo well. He hardly had any seizures and he was just looking all around (or he was trying to look around cuz his mask was making it difficult LOL).

Then we came back home for a hair cut and I gave him a new look. I left that little tuf on top of his head. He has the best hair for playing with.

Then he had a bath and as you noticed (pic on front page of web) I took a pic of Jim and Max in the tub. I swear this is the best picture I've seen (and I took :o) of a father and his son. The pic on the web isn't as good as the actual cuz I had to change the size but, believe me, brings tears to my eyes looking at it. I need to get this one printed a good size and framed.

Oh and when Max and Jim where tubbing it we had Max holding our fingers and Jim was telling him to squeeze our fingers. Max actually would tug some on our fingers. And it was pretty much at the appropriate times we asked him to do this. We could feel this little tug on our fingers.

And you know how I was always saying Max sleeps so much at Sugar Lake, well it's gotten better I think with his pump turned down but he was awake the whole time with us from 11am til 5pm. Really makes me feel good knowing that he enjoys being with us. I mean when I see him out at the lake house and he's always sleeping on me, I feel.....oh heck I have so many feelings LOL. But when we actually take him out or home and he shows so much alertness.....Lets just say we had such a nice, wonderful, feel good day with him that it's taking some icky feelings away that I was having the night before.

Ok it's late and I'm tired. I just wanted to write some things down while it's in my head.

I just love Max soooo much and miss him so much after a day like today. I just can't hug and kiss him enough. If you could have just seen how cute he was all day. I can't put it into words or Pictures. His little talking to us that he does, the looks he gives us.

GOD sure did give us a sweet, sweet boy. He knew Max would be a very special boy to us no matter what.

I have more Pics to put up after these :o)

Love to you,
Lisa, Jim, Spencer and Max

Monday, October 25, 2004 10:04 AM CDT

Morning,

Ok, I can update now cuz I guess I needed a new computer mouse. But, I think the keyboard is going now. DANG!

So, Max's busy week is over. All his appts went really well.

His first was with his ortho. Dr. Novacheck was very pleased with his inciscions (sp?) healing so well. Was pleased with his range of motion that Max has in his legs. And that his spine is still very loose and flexable.

His spine did have a more curve in it again but we figured it was cuz his TLSO (his spine brace) was to small and the next day was his day for fitting his new one.

Dr. Novacheck is such an awesome Dr and even more then we realized. I guess he's internationally known for his work with cerebal palsey kids. He was in Argentina (sp?) last week to give a persentation or something and in a news letter I get from Gillette, he was giving an award from Exceptional Parent Magazine for his work with CP kids at the metrodome when the twins were having Cerebal Palsey night on Aug 3rd. He wasn't able to be there to accept the award so he had one of his patients accept it for him on his behalf.

Like I said, we didn't know he was more then just your average Dr doing just his job. He sounds like he goes that extra mile. Gee, I just picked him out of two Dr.s cuz I thought his last name was neat LOL. (he's a packers fan so I do have to knock a couple points off for that LOL. Just kidding).

Max's other appt for last week was his TLSO fitting which was a long day and Jim was able to get off work to go with me on this one. It went well and seems to be fitting good. I do have some have some concerns that I will ask about next time we go to Childrens West.

We took Max down to the cafateria to eat that day and Max was looking all over. We got into a conversation with some other parents about hips surgery so Max seemed interested in the other kids and was trying to see them we think cuz he was sure looking in their direction.

Max was awake also the whole time we were out that day. We are really thinking that being it's soooo quite at sugar lake that is why he sleeps so much. Guess I would to :o)

On Friday we were able to have Max's baclofen pump turned down and will have it turned down again if all goes well this week. Then he'll be back to what he was before surgery.

I think this will help his staying awake also. I guess he's not doing so well with his home schooling as he was last year. I had a talk with him and threated to take his toys away like we would take Spencers video games away if they don't start working harder. But then it dawned on me that Max's toys are his homework LOL.

I think if Max can stay awake during the day he should beable to gain some of the things had last year that they were working on such as the switches and responses.

Well, the end of Oct is almost here. Spencer and I carved pumpkins on Friday night with one left to go and I decorated the house some. Kinda late but, Spencer wanted it done.

Thinking taking Max trick or treating around the town when they have the businesses handing out candy. I Feel bad that he misses out on this day cuz he liked it so much. It's just hard to take him out so late and it's usually so cold now.

Thought Max would make a good Ghost. He'd be a big ghost with his wheelchair and the sheet would flow nice and I thought with these stupid bigger seizure he has now and then...well could you imagine....all of a sudden his arms go out to the side and he makes his laughing noise. I figure if you can't beat em (the seizures), join em and make use out of them when you can LOL.

Take care,
Lisa

Saturday, October 23, 2004 1:18 AM CDT

Morning,

I'm having computer probs and just spent an hour updating and then lost it all. Tried again and now it's working again. Guess I'm pushing my luck here.

So, I'll make this one quick.

Max's three Dr.'s appts. this last week went really well. I wanted to say so much more. But, the way my computer is acting, I'm afraid it won't give me the time to say it before it stops working.


If I don't get on again, I'll have Joanne (Grandma Congo) update for me.

Till then, thank you for keeping Max in your prayers. I'm missing him sooo much lately and really need to get him home for a sleep over to get some good quality time with him and not just these Dr. appts. I'm thinking he needs us to be with him and to be home. He seems to be showing us this with his being awake when we have him out and about unlike when he's at sugar lake and sleeping all the time.

I'll explain in my next update after I get this dang computer fix (if possible :o( )

Lisa

Wednesday, October 13, 2004 6:00 AM CDT

Good Morning,

I woke up at 5am and just couldn't get back to sleep. This is very odd for me LOL. I like mornings but my eves don't allow me to go to bed early (work that is) So, thought I would get up and do some things and update and just take a nap later.

Also again my computer is sick. I can't get on 9.0 (which I'm used to) but, I can get on with 8.0. My mouse and arrow don't seem to want to work either now. I have to constinly click my mouse to move the arrow which drives me nuts and then I open things I don't want open then trying to get my arrow to go where I want to close what I opened.

Got a call from Spencers Math teacher and he's having trouble in Math (must get that from his mom LOL) so we have to work extra hard to get him going. Ya know it's going bad when the teacher calls ya at home.

Now the weather is getting cold and I'm not ready for that.
and other small piddly stuff that just disrupts ones life when you are trying to have the perfect life LOL, ok, right I know...

BUT MAX IS DOING WELL!!! (knock on wood :o)

He's done with his out patient therapy. He has done well and has gotten back into his blendable self again.

Last Saturday, Jim, Uncle Scott and I took Max out to Ney park reserve for that stroll in the woods (I have some pics that I may not get on til later).

He seemed to enjoy the stroll. Of course it was a little bumpy ride for him. It was really nice out that day so I'm glad we got him out there when we did.

That friday I took him to get his flu shot. Heard about the shortage so I called right away and got him in. Then we went to walmart. Had to show Max how it had changed. Showed him the game room and then when we left there he made a big sigh sound. Kinda surprised me cuz he wasn't in a yawn when he makes this noise usually. Just signed Loudly :o)

He sure liked to look at the truck toys and the bigger boy toys but show him any of the baby light up toys..... Uh Uh. He wouldn't look at them for nothing. LOL. Guess he's growning up.

One thing interesting. Have you ever noticed how loud it is at walmart. They have those TV's blarring and the the PA system seems to always be saying something and then I was trying to show Max the Halloween things that make noise. Very loud there but, Max didn't have any seizures. Now he supposivly has stimulated seizures so you'd think that he would have had one after another. He had a few at the Dr's office but not walmart. So I thought that was neat.

We also did some clothes shopping for Spencer. I need to go through Max's stuff and see what I have for him. I know I only have a few things left of Spencers and then no more hand me downs for him (maybe shirts down the road). Spencer has gotten so big that Max will never be that size LOL. And of course Spencer wears his pants out til there just holes all over the knees.

Max and I have a busy week next week. 3 appts. One with his bone Dr and then the next day his TLSO fitting which takes alllll day (9am-3pm) sit around and see if he gets red marks from his new one and then they adjust it. And then Friday his pump refill. I'm going to have them turn that down starting now. It's been up since surgery.

Other then that things are going well. Oh, and to the person who wrote about that book called The purpose Driven, I had bought that book a few weeks before you wrote but, just haven't gotten around to reading it. My church is doing a 40 day planner but I couldn't go cuz it didn't fit in with my work schedule (the usual story. Working eves). And I think my 40 day plan will most likly be 80 days being I don't take the time to sit and just read LOL.

Stay warm this weekend. I think we'll have to bring Max home and curl up with him and watch some good movies :o)

Lisa

Friday, October 1, 2004 8:24 PM CDT

Good Evening,

I put new pics up. On the front page is Max and I and believe it or not I took that myself. Had to do something cuz Max was sleeping on me AGAIN! His vision teacher had said that after his ordeal with his surgery and brace and all, that he's just gone to another place to get away. Suppose now with him having to be stretched back into shape too.

Well, the 29th has come and gone and actually it went well for me that is. Of course like I said Max and I went outside to get some fresh air down at a lake and of course we had a beautiful scenery but only I got to see it cuz Max was snoozing.

I had his balloon with a note attatched to send to GOD but the note was to heavy so I wrote a condensed (SP?) version of it on the balloon and we (I) let it go and it got caught in the tree so I was able to get it again and let it go once again only to have it get caught higher up in a tree.
I did notice it let loose after awhile so I don't know where it went. Probably caught in a tree somewhere else. Feeling like Charlie Brown here LOL

I think I had a harder time on Monday and Thursday about Max this week then on Wed. But, like I've said before, when I'm left alone with my own thoughts it sneeks up on me. Though on wed. I did watch the clock more then anything and took note at 2:55pm (when Max went outside) and 3:20 when 911 was called. I found out that when I went to the wright county to ask them to figure out how long Max may have been in the water.

A few other things ran through my mind also and a few tears came but, I shook them off cuz I didn't think I needed to go there and make myself miserable.

Jim went out to see Max that evening and of course he was awake for him but Jim said he had lots of seizures.

Max was to have PT today but he was running a low grade temp so we cancelled. I plan on having him come home tomorrow if he's feeling well enough. Have a little family celebration with him and let him know how much we love him.

Spencer seems to be doing better. Back into his video games again and found some cheap ones on the internet that he used to have (Gee where did they go? Maybe if he'd clean his room he'd find them LOL. ) So, that's on his mind now and nothing else. UGHHHH!!!

Also had Max molded for a new TLSO (that torso brace) now we just wait and in a couple weeks spend allllll day down at Gillette having them see if it causes red spots and have them fix all that.

That's about it for now. Max for the most part is doing well all in all. Have to count our blessings for sure cuz he could have worse troubles then sleeping all the time LOL. Maybe I'm just jealous LOL

Take care, stay warm this weekend and thank you all for your prayers once again,
Lisa, Jim, Spencer, Maxwell

Friday, September 24, 2004 8:27 PM CDT

Happy Friday evening,

First I must tell you that my computer isn't cooperating with my camera AGAIN,so I can't put new pics up. But I put some oldies but goodies up.

I wrote down lots of things that I wanted to say but, that was then and this is now and I'm feeling somewhat different LOL. We women are aloud that ya know LOL.

I do have some exciting news about Max in therapy that I want to tell ya first.

Awhile back Dr. Wical had said (when Max had his broken leg) that Max can feel the pain but can't tell where it is coming from.

Well, Max showed me last week in therapy that he DOES know where the pain comes from.

You see the therapist was doing some ankle stretches on Max and it must've hurt bad cuz he started to cry and at first he didn't take a breath and was turning blue in his lips and tongue and I started to panick and kinda was shaking him to breath and he finally took in a deep breath and just wailed.

Ok I know what your thinking, what's so great about THAT? Well, the theapist stopped until Max calmed down and it looked as if he went to sleep but, he had been sleeping the whole time and I'm thinking he was just faking in hopes that she would go away LOL.

The neat thing is is that when the therapist touched Max's ankle and foot again he started to wimper and cry. The therapist told Max that she hadn't even started to do the stretch but, he knew when she touched him there that it was coming (and I think he thought if he'd cry again she'd not stretch him cuz she had stopped when he cried before :o)

He did this on both ankles. Cried when she stretched him then she'd stop and he'd stop crying but, when she would JUST TOUCH HIM he would start to cry again.

So tell me that he doesn't know where the pain is coming from.

AND (this was on Thrus of last week) the following Mon. When the therapist did all his other stretches she said to Max, OK, here we go with the ankle stretches and no sooner did she touch his ankle and foot, he made a face and lifted his arms up like he was going to start to cry.

Now that tells me he does remember from last Thurs which I find exciting that he can remember from then.

So the other thing I was going to write about was about the 29th coming up here and I see someone wrote a nice guestbook entry about this day.

Since then I have been thinking about it and like the past Sept 29ths, they just go by like any other day really. I mean It's not like it's Sept 29th of 2000 (Gosh forbid if the 29th of 2000 kept coming back every year. I couldn't handle that :o( This is a whole different day in a whole diff. year. Something good could happen on this day LOL.

I don't need Sept 29th to make me play back that terrible day. I can do that any day of the year.

I do have some plans for Max and me during the day. If it's nice out, I'll take him for a stroll down by that lake and woods area where Max, Spencer and I were earlier this summer and let some ballons go in the air. Bring him home for some ice cream cake. And of course lots of hugs and kisses.

Oh I'm sure I'll cry and talk to Max about it. Lately I've been more on the mad side and then comes the numb and dumb feelings (ok, I know some people may say I'm numb and dumb more then just once a year LOL).

I guess we just take this day one year at a time as they come.

I do know that my prayers have been more focused on Spencer these days (added guilt cuz I usually don't pray for him and it just hit me that he needs them too).

Spencer has been having a hard time in school and has said at one point that he hates life.

Jim and I have talked with him and really can't figure out why he feels this way. Spencer says himself he doesn't know why.

So, we have that to work on and I know my prayers are being answered for him cuz he has shown signs of feeling better and I also bought Spencer a prayer book and told him to say prayers, talk to GOD. I hear him at night talking (assuming it's GOD he's talking to).

I don't know if we will every realize the affect Max has had on Spencer anytime soon if every or if Spencer can explain it to us one day when he's older. Maybe it's not even that. Who knows but, I can't imagine it hasn't had some affect on him.

Well, I think I've said all that was in my head and heart. I think more will come up as the week goes on. I can act one way but, then that brain, heart sometimes can take over when I'm not expecting it so I'll let you know if what I've said here holds true when Wed. comes around LOL.

Thank you for your prayers for us this week and If I could ask you to send some special ones for Spencer. I know Max is safe and doing well (in his world), but Spencer has to really deal with so much more. Know what I mean? Life can be hard at times.

God Bless,
Lisa, Jim, Spencer, Maxwell

Wednesday, September 15, 2004 7:57 AM CDT

Good Morning,

Thought I'd write a little quick update while waiting to take Spencer to school.

Max had his first therapy appt down at Childrens. She said that Max is doing well for being in a cast for so long but, he has a ways to go to get where he was.

He cried a couple times while she bent him this way and that way. He made a face that took me back 4 years ago :o) He made a pouty face while crying that looked just like he used to do when he wouldn't get his way and was ready to cry. It was so sweet to see but yet like I have said I don't like to see him cry.

The therapist had Max laying on his side facing the big mirror and I was sitting at the top of his head and talked to him and he looked right at me in the mirror. I noticed him looking right at me a few times when talking to him. He probably is looking at me wanting to say "I"M NUTS" While I'm telling him this will all get better and the pain won't be so bad after awhile. He just has to work a little harder this time around.

Max has had a couple throwing up epsoides last week. Not sure if it was him having to burp, cough, or if a little bug going around. I heard that one of the kids at Sugar Lake was sick with too. Oh that lovely time of year is already here with bugs flying around.

I have to get a hold of Max teachers and find out when they are going to start to see him. Surprised they haven't called someone to let us know.

Max's seizures seem to be doing some what ok. Of course when he's getting therapy he has lots of them just proving once again that they are very stimulated seizures.

Max has another therapy appt tomorrow. See how that goes. I need to get him home again for another bath. Don't know if it really helps being he's not here to get one everyday.

So, I'll let you know how Max continues to do with his therapy. Thank you again for the prayers for him. I know he will get his flexabilty back again with all your prayers. I really need to have him getting back in shape for horse riding next summer. I think this has helped him lots and needs to continue it. And being our winters are so long he has time to do this LOL.

Lisa

Sunday, September 5, 2004 5:23 PM CDT

Hello,

What a nice Sunday. Rainy and lazy. Well, for the most part lazy. I'm heading there real soon after I'm done updating here.

We were going to bring Max home Saturday for his hair cut, tub and cuddle time but, the things we had planned for Sunday turned out to be Sat. cuz the weather was nice and heard today was rainy so we had Max home today.

He looked crabby most of the day LOL. I cut his hair out in the garage when we first got home (Jim gave him a wrench to hold on to :o) and then got him in the tub with Jim to give him a good scrubbing and get his bandages off (those real sticky ones they use now a days over his incisions). Max didn't care for that to much but had a seizure so that was the time to just quickly get them off.

Grandma Joanne and Grandpa Ralph stopped over just in time to see us all in the tub LOL. I knew they'd be over soon so of course I had my swim suit on but, Max and Jim had their birthday suits on LOL. I had to get in cuz leaning over the tub is hard on the back and the whirlpool is big enough for me to sit on one of the seats so I could wash Max up and try and get some of his old skin off after being in the cast so long.

So, that crabby look sure left though when he saw Joanne and Ralph.

The bath must've pooped Max out cuz he snoozed the rest of the afternoon so, I decided to tube feed him instead of waking him and having him eat orally.

He cried a few times on me when moving him around. His leg must hurt cuz he sure babies it. He tries to straighten it out and when he gets it almost there he pulls it up again.

So he knows his leg hurts and he kicks around to find the comfortable spot with it.

I have to call the clinic and push for his therapy schedule and get him going on that. I think he'll need it more then I thought. And I wonder how long the pain will last. Guess they take out the hardware in his hip 9 months to a year so I hope when that's done it doesn't set him back again.

I thought I had more to write but, I'm really tired and can't seem to think right now. Oh, my computer isn't reading our camera for pics to be uploaded (or down which ever it is) so, I can't get new pics up yet til I figure that out.

Well, time to eat and veg out. I'll update again soon and write what I'm forgetting this time LOL. I just know there was more to say LOL.

Have a nice Monday off. I'm sure glad I do :o) A three day weekend finally.

Lisa

Tuesday, August 31, 2004 8:26 PM CDT

Good Evening,

Well the day is done and over. Max got his cast off today and saw his Dr and he said things look really good.

Now for Max's opinion, his is different. They got his cast off and of course the nurse and I couldn't stay in the room when they sawed away but, it sounded nasty. And then we heard Max JUST CRY OUT! We knocked on the door (it was locked for some reason LOL) and when we got in they had transfered him from the table to the chair so his legs bent farther then comfortable for him.

Now you have to realize his legs have been straight for 6 weeks and bending was not an option for Max at this time. He cried soooo hard his little chin just quvered (sp?).

He eventually calmed down and we saw the nurse prac. for his pump refill and she got him some valium/tylenol 3 and we are to give that to him for a couple days for comfort.

I cancled his TLSO fitting (modeling for a new one) just cuz I thought it would be to much for Max being he didn't seem to care to move around to much and when they do this (as we know from past experience) he got turned and sat up and rolled again alot and it was just hard enough on him to change his underwear. I made another appointment for this in a month.

He did have a whirlpool and some therapy and this went much better. Max is able to sit up in his wheelchair so bending such is really great to see him beable to do but, if his legs are bent anymore then that right now he'll make a nasty face at you. So, when they pick him up to carry him (Arms to hold his head and shoulders,arms under his knees)his legs go past that sitting position. Make sense?

But we are surprise that he can bend in comfort as much as he does. We are soooo proud of him for being such a strong boy.

And all your thoughts and prayers once again have sure helped him.

Jim went out to bring his wheelchair back (we have a rented one) and Jim said he was wide awake (told him today was the day he could start to stay awake and not sleep all day LOL) and looking good. Hardly any seizures.

I plan on bring him home to give him whirlpool baths.

Oh, I have to tell you about a dream I had of Max a couple nights ago. It was about him getting his cast off and Max was perfectly fine. He was talking and walking and the best part of it all was that he was giving me HUGS AND SAYING "I LOVE YOU MOMMY". It was sooo really feeling. His hugs were great. I held him for so long and really didn't want to wake up when I did.

So of course I didn't get my dream but he sure did cry out so hearing any kind of voice even if it is a cry sounds nice in a weird way if you know what I mean.

Well, Spencer starts 4th grade tomorrow and for the person who wrote that prayer for him, thank you so much. I think Spencer needs it (or at least I do :o) He's been having tummy problems (we think reflux). I have to make him an appt with the Dr. He wanted one and when we were to go he refused saying he was better. My mistake, I should have made him go. He's been taking that over the counter Zantac.

I've been worrying about him latly. Just some things that have come up (hard to explain in printing) but, just things that makes a mom go...hmmmm....This isn't the norm for him. I think he's just needing more attention or is looking for it. Oh, he's not being a bad boy by any means, just health issues, seems he's been having some ache or problem just latly that aren't even related to one another to form a sickness in my Dr mothers dictionary.

Max will be starting his home school soon too. I'm really excited for that again.

The summer has just flown by. Seems like we were just saying good bye to his teachers and saying see ya next fall. And here it is already. Guess it's always that way.

Laurie and Johns vow renewal on Sat. turned out wonderful and beautiful. The day was just gorgeous. You couldn't have asked for a nicer day. It was so nice to see some people that we haven't seen all summer and some in quite some time.

Well, I have to get Spencer in the house to take a shower. Gee, I've never seen him playing outside this late all summer. He's either trying to get tired and/or soak up every last minute of his freedom LOL.

I'll get some new pics up of Max soon.

Take care,
Lisa

Friday, August 27, 2004 9:20 AM CDT

Morning,

A friend of mine emailed me and pointed out that I hadn't updated in awhile. She was right.

I guess I don't have much to say til Max gets that cast of come this Tuesday. So, prayers sure would help in that all goes well. His hip looks good and that he easily gets back in shape (bendable in his legs and waist).

Aunt Bev, I looked back on the sunset pic and YES THERE IS MICKEY WAVING AT US!! He's the older Mickey so, only us older people would really see him. Spencer kinda saw him but had a hard time seeing him as I saw him.

Jim has been working soooo hard to get his school ready. They had tons of overtime and he has worked 19 days in a row. Today is his last day of the stretch. They had lots of construction work going on there he had clean up after.

Lots of you know that my sister in law and brother in law (Laurie and John) are renewing their vows this Sat. It'll be fun to see everyone together. Heard lots of family will be there. I sure wish I could bring Max but, with his cast on, he's not easy to move. I'm going to find a pic of him to bring with so he's there in heart and spirit.

Well, I have to run. Busy day today to get stuff done cuz I think we'll be gone most of the weekend :o)

LIsa

Tuesday, August 17, 2004 11:21 AM CDT

Hi,

Just a quick update. Not much to say other then just waiting for the 31st to come. Days sure don't go fast when your waiting for a day to come around LOL.

Max has been having trouble sleeping/getting agitated at night and has been getting his sleepy med to help.

His tummy was extented today so his cast was tight on him around the left side of his tummy.

I'm thinking he's getting upset about this whole thing now and it's getting to long for him and possibly itchy inside the cast. I know when you hear of people with casts on they get itchy so, I would imagine his whole body is feeling that way.

I'm starting to get alittle antsie for Max also. I don't want to see him suffer in ANYWAY. But, nothing I can do really.

So, that's about it for now I guess. Not a whole lot going on with him when he's like this. Just him being able to get through it without probs if he's not feeling comfortable.

Lisa

Saturday, August 7, 2004 11:46 AM CDT

Hello to everyone,

I know I've said this before but man does time fly. Didn't realize it had been since July 30th my last update.

I don't have much to say really. Max is doing well. He's taking my advice and sleeping through this whole ordeal with the cast and all.

He does wake from time to time to eat some orally to keep his swallowing going good. But, otherwise he's mostly tube fed.

He's finally slept a good nights sleep. He's been up late at night (sleeping off and on) and sleeping during the day. But he still sleeps alot during the day too LOL.

We have an appt on Aug. 31 to have the cast removed. It's going to be along day cuz not only do they take the cast off but do xrays, talk with the Dr., has his pump refilled, he's getting fitting for a new TLSO (his torso brace), then he's going to have therapy. So we get there at 9:15 am and his last appt is at 1 pm for therapy so we won't be getting out of there til like 2 I would guess.

I'm very excited to see how he will be when he's out of the cast. I know he may take awhile to get back in to his routine and his legs in shape but, he's been sleeping so much and I'm also curious how his seizures will be and to see where we are with them. Now with his sleeping so much he's not having that many.

Well, I should get some house work done while the clouds are still out. It's hard to stay indoors when it's nice out being summer is almost gone now (summer? Did we have one?)

Thanks also for prayers for Grandpa Jerry. He's doing better and is home finally after a long stay in the hosp.

Lisa

Friday, July 30, 2004 9:51 AM CDT

Hi,

Sorry I haven't updated sooner. With Max being down in St. Paul we've been doing lots of running down there.

But we didn't get him back to Lakeside (Sugar Lake) on Tuesday.

Lots of stuff to do to help him stay comfortable and keep him regular in the potty dept if ya know what I mean. He really can't sit up very high at all and is pretty much either laying from side to side, back or tummy.

We had communication probs with the nurses down at Gillette so glad he got out of there. But, it's hard to feed him orally at all being he has to be so flat and even hard to tube feeding him cuz he's so flat.

The staff did put a wedge under Max's mattress so it gives him more of a upright without the bend at the hips.

He seems comfortable for the most part but is still on some tylenol 3 and valuim from time to time in the night to help him sleep. But he sleeps all day then LOL. I guess find with me if he pretty much sleeps the whole 4 weeks away.

Then it sounds like he may just get a whirlpool and some therapy when the cast comes off. There was talk of the kids sometimes stay a day or two at Gellette to get therapy down there.

Then I'm sure lots of running back and forth for out patient therapy and home for whirlpool in our tub. I hope he makes the transition back smoothly and quickly.

Oh I have to explain the photo on his front page. I ran out of kid shampoo and knowing how my shampoo can burn your eyes out, I put swimming goggles on Max to keep the shampoo from getting in there.

Max's seizures have been really good but we think cuz of the valuim and Tylenol 3. They left his baclofen pump turned up some being he was looking more comfortable (they turn it up for surgery to help keep his tone down) and his seizure meds are staying the same for now too.

Well, I have to run and get some things for Max and go out and see him.

Just want to also say if you can send some prayers to Grandpa Jerry again. He's having a hard time with his heart (congestive heart failure) and has pneumonia again. He's still in the hosp. Went in last Saturday. Thank you all so much for all the prayers I keep asking for. It's nice to have such a huge chain of them going cuz they really do help emotionally, spiritually, and physically :o)

Love to you all,
Lisa, Jim, Spencer and Max

Friday, July 23, 2004 11:26 AM CDT

Hello to everyone,

Sorry I didn't update yesterday. Was down at the hosp. longer then we had expected and then I was off to work and didn't get home til 11 pm.

So let me start off with last weekend. This is going to be a long update so bear with me :O)

Last weekend Max had a bruise that showed up in his right groin and on Monday preop physical, the Dr didn't think much of it being Max does bruise easily.

Well come Wed. this bruise got really big and started to go down and around his leg. So, we took him to the ER. Jim came home from work to help out being we had promised Spencer a friend could come over and it turned out this friend wanted to spend the night cuz his mom got a b-day gift from her brother to go to a concert (this actually was a long and weird day being I wasn't sure having a friend over night before surgery day was a good idea being we had to get up at 5 am and I was stressing cuz of having to get Max to the ER and surgery the next day if this bruise wasn't going to conflict with it. One of those days when everything was just not going MY WAY LOL).

Ok, anyways. Turned out best that Spencers friend came to keep Spencer company for the next 2 days and Gramma Congo, as wonderful as she is, watched both boys the whole day come Thurs and took them out to breakfast.

Max's bruise turned out to be a nasty one after they took a CT scan. Apparently a muscle had torn away from the bone and bleeding was getting inbetween the two.

We figured it was from a stretch that Max gets during his ROM (range of motion) and it got injured once and kept getting injured each time they would stretch him so it got worse. They say lots of athletes get this kind of pulled Muscle. I know Aunt Laurie did trying to water ski but, it was the back of her leg.

The good thing is is that this leg is to be left alone and with his cast on from surgery it will help this muscle heal. But the down side is that calcuim can build up inbetween the muscle and bone and the Dr. said if this happens he would have to do surgery to scrape it out.

But, he was able to do surgery still being this bruise was on the right side and surgery was on the left. All went well and the Dr. was pleased with how smooth things went. He said that Max's leg was really deformed more then he had realized. It was out, up high and turned out (as if facing his tummy). So he got it back in place and told us (which I didn't know) that after 9 months to a year he takes the plate and screws out that are holding his bone together cuz he had to cut the bone to get it back in place (cutting the bone we knew he had to do).

He also loosened and lengthen his muscle/tendons so that they wouldn't pull his hip out again.

I had asked what is to keep from this happening again and he said, as we have been doing, stander, ROM and the baclofen pump to keep him loose and stretched. Gee didn't seem to work before so.......

Max took along time to recovery from surgery. Way longer then we expected. Surgery was an hour fifteen minutes and recovery after casting (that took an hour or so) took like 5 hours.

Max has a plaster cast on and it was cold so it dropped his temp to 94 and they spent those 5 hours trying to raise it back up to at least 97 before sending him upstairs to his room.

We finally let them see Max in recovery cuz I had to get home and get to work knowing I would be working late and would be really stressed and tried.

I can tell you that I'm glad I didn't put new contacts in with all the crying I did from Wed thru Thurs and at times really held them back. In recovery Max looked just like he did in PICU 3 1/2 years ago and it really hurt to see him like that. Max hasn't looked like that since (oh I was going to tell you in the ER on Wed a nurse came in that was there the day Max drowned. She said she hadn't seen him since that day and that it was a very sad day for her to see that happen to him)

We got a quick peek at his cast and Man oh Man it's a big one. The video they gave us to watch was nothing like what he has. Seems he's more covered with it. They only exposed area's are his chest and tummy, shoulders and arms and of course his neck and head LOL. But, he's casted around his back and around his sides under the arm pits and all the way down to his toes. Jim is going to get some pics for me today and I can let you see. I had to get some things done around here (need food in the house really bad. Spencer has gone to drinking TAP WATER (OH NO!) and drinking my diet coke. I usually buy bottled water for traveling but Spencer has gotten into the habit of drinking it at home. I also need to get my jobs done today later so that I have the weekend opened.

Oh, one other thing I was going to say before surgery when we just got to the hosp. Max was sleeping and I swear he was dreaming. He was stretching and moving around and then trying to cough and then yawn and then he'd do it all over again. It was weird how he was doing this so I woke him up and then he was fine. Sure looked like he was trying to run away LOL

Oh and I also asked the Dr (who also does the surgery) if he was the kind who likes to listen to music while working in surgery and he smiled and said "yeah, why did you hear the music?" We thought boy he must've been jamming if he thought we heard it. I said no but was wondering. He said he was listening to Bruce Springsteen today but listens to all diff. kinds. Thought that was kinda cool for Max LOL.

Oh (ok lots of Oh's now cuz I'm filling in the spaces I left out) One good thing about Max having his other leg casted is cuz his right foot ankle has always been the stiffer one so with this cast on and his foot positioned upright, that will give this muscle behind his foot a good stretch.

Quick note to Ann (Max's old roommates mom)THANKS for stopping in to see Max and bring him balloons. We stopped in to see Ryan but he was sound asleep the nurses told us.

We would like to also thank everyone for the prayers and guestbook entries. So much appreciated and very comforting to us.

Max will have this cast on for 4 weeks which is less time then I thought. I thought maybe more like 6. So, this is good. Then we can move on to getting Max going again and see if his toe wiggling comes stronger to him.

Our prayers were answered that surgery went smoothly and so far Max seems comfortable.

Thanks so much once again,
Lisa Jim Spencer and Max

Wednesday, July 21, 2004 9:26 PM CDT

Good Evening,

Well tomorrow (today 7/22) is the day of Max's hip surgery at 9:45 am. I'll let you know how it all goes when it's over. Today was terrible for me and I just.... I guess lost it. Just had to cry my hardest in a long time.

But I'll explain all of todays (wed) and tomrrows events that happen after I get home from the hosp.

Just wanted to ask for some prayers for him come tomorrow morning. I know he (us) sure could use them. Max has been doing so well for so long that this is a pretty big deal for him and us.

On a good note his seizures seem to be doing well again and have settled down some.

Thanks for your continued prayers for him.

God Bless
Lisa

Monday, July 12, 2004 8:00 PM CDT

Good Evening,

Looks like we got our warm weather now. Actually it's really nice outside but, super humid in our HOUSE. We our one in a few families whose houses don't have central air and we don't have our air conditioner in cuz it wasn't needed so far (this was one plus for Max moving out to Sugar Lake. It can get really hot in our house and Maxie would just sweat and I think it may had contributed to some of his being upset at night) Fan's are working pretty good for now.

Didn't realize it was July 1st since I last updated. I really don't have much to say. I did say last time how well Max's seizures have been doing. Well, the last few times I've had him and took him to an appt last Friday, they were terrible. I mean I have not seen them like this in a long time or if ever cuz he was just having one after another with very little time in between.

So last Friday taking him to have his pump refilled (sounds like I'm getting gas for him. Maybe we should call it his tank LOL) I was really upset and cried for the most part taking him there and back. I called his neuro Dr. and told her about it (I was actually surprised I got her nurse and not the recording) The Dr thought maybe that being Max has gained some weight and gotten taller that he'd out grown some his meds that he started a while back. So, she had us up one of his meds and we are to get some blood drawn to check his levels.

Thought we'd be doing that today but, his peds Dr here in town has not received the fax so, maybe tomorrow.

One thing I've learned from all this is that Max's seizures sure do interfer with his showing us any little (ok big to us :o) thing that he can do for us.

I did find him a bird toy at a garage sale where you put your hand up through the birds body into his head and when you squish his beak together it makes noise. I was showing Max at one of those long stop lights on hwy 55 in plymouth and he looked right at the bird for me. He did this a couple times :o)

Other than that. It's just not been a good summer for him/us so far with his surgery coming up and this seizure deal suddenly coming on (and this weird weather. To cold and rainy to get him out and now to wickedly hot and humid). I sure hope his seizure deal is cuz he's gotten bigger and needs more of his meds cuz he was just doing soo well where he'd have only like 2-3 every 8 hours.

I'll let ya know what his levels are and keep ya informed as to why he maybe he's having more seizures.

The days are counting down before surgery. I need some idea's where to take the kids for some entertainment. Anyone have any? :o) Watched the video on what his cast will be like and I really don't think he'll be getting out much with this big ol honkin thing on him. I'm just worried about his being able to sit up enough to eat orally so he doesn't have to get tube fed for the 4 or 6 weeks.

Take care,
Lisa

Thursday, July 1, 2004 9:12 PM CDT

Good evening,

It's been busy around here latly. Seems like we're just going, going, going. Guess it's the finally nice weather we are having (oh, and all of Max's appts he had LOL).

Max's surgery date has been moved to July 22nd now. So, I guess this is good. I don't know. I really don't want him to go through all that but, maybe it's a good thing and something great will come out of it (like BIG LEG KICKS) Max is still wiggling his toes for us with this foot (left). Grandma Congo (Joanne) even asked him to wiggle his toes for her and he did. Her and Grandpa Ralph went out to visit him last Sat.

His Seizure have been really, really doing well (as for not having so many). The Dr did up his one med to everyday and we've really noticed a diff. The only reason so was able to up this med was cuz he gained some weight.

So, as we have been getting alllll excited about him having like one seizure every hour Jim and I and Spencer go out to see Max yesterday (Jim is on vacation this week) and I guess with his home nurse being there working we just were a jabbering away and pretty loud I would say (trying to talk over each other LOL). Man, Max had seizures that just wouldn't stop and some that I haven't seen in awhile. Then his snorting sound too. He's not used to the 5 of us all together again like we were in the house here at home. His seizures are I would say more noise orientated then just stimulated which I would take has physical. Know what I mean. Lots of sounds around him.

BUT, Then Last Friday Spencer and I took Max to see the movie Garfield. I put cotten in his ears to cut down on the loundness (you know how movies go, one minute they are normal sounding then BAM>>>>>>>louder then heck). Max did so well on the way to the movie (no seizures) During the movie I had him back kinda behind me on level floor(we sat in the back row. I don't trust those wheelchair brakes LOL. Could you imagine.....OK don't. Scary thought)

Anyways, I was holding Max's hand and I could tell when he had a seizure and he actually only had one big one and maybe a half of one. Oh, his hands would come up but, that seemed more like a startle thing. I would look at him and talk about the movie and he'd look at me then back at the screen and then me again. He actually watch the movie for the majority of the time. Towards the end his eye's would start to wonder to the small lights on the walls but, I suppose he was checking things out and maybe the movie got boring to him at times.

On the way home he didn't have any seizures either except for one thing I caught out of the corner of my eye which started as a yawn and he lifts his arms up and the left went flying off to his side. Not quite sure what that was.

We had such a good day at the movies I was just on cloud nine for a long time. I can't remember the last time I was that happy after being with him.

So, with his surgery date changed and coming up closer, I've been trying to think of other things to do with him. The weather has gotten so hot suddenly and skeetery. If anyone has any idea's let me know. I don't think coming home to visit excited him to much LOL. Feel like he needs to get out to other places other then just from house to house. Though he should come home and get a good whirlpool before surgery. I better get that day planned now when I'm done here.

Thank you, thank you, thank you for all your prayers for Max and our families.

I hope everyone has a wonderful July 4th. Heard Sunday is to be the nices day of the weekend.

Love to all of you,
Lisa, Jim, Spencer, Max

Tuesday, June 22, 2004 8:19 PM CDT

Good Evening,

Sorry it's been awhile since I've updated. As I had said my computer wouldn't let me on AOL. It's still not perfect but, for what I do on the internet it works fine for me.

I mentioned Max wiggleing his toes for me in my last quick update and ya know he still does it for me. It's his left toes (the leg that he's going to have surgery on) so, I'm hoping that after surgery he can really wiggle and possibly move his whole leg when I ask him to. His right doesn't want to move for me as much (the toes that is).

I was holding Max and talking to him about his up and coming surgery and what it's about and why he can't ride Toby right now. He wasn't doing anything and just laying quitly in my arms until I mentioned not riding Toby and boy or boy did he start his vocalizing (his uh's) I"m not sure if he was expressing that he was mad for not being able to ride anymore or if maybe he was glad LOL. I like to think and I do believe he does like to ride. He's never shown any signs of not liking it as far as his facial expressions.

Spencer and I took Max to the Annendale school play ground the other day and then went to some nature trail place out in Maple Lake that I've always been curious about. But, after walking just a little ways down a wooded path that takes you to this building, the skeeters found us and wouldn't leave us alone. I didn't really plan on this and was not prepared with skeeter spray. I also don't think I'd get Max down the trails even with his stroller cuz they are narrow and bumpy. Spencer and I rode our bikes down the luce line today so, maybe that would be a nice place to stoll Max in his stoller. And the skeeter didn't bother us. Pack of nats every now and then but, it was wide and kept smooth for easy strolling.

Spencer and I may also take Max to see the Garfield movie on Thursday. Never taken Max to a move and just waiting for one that he may be interested in.

Did I mention that Max's surgery isn't til July 26th. So, we do have time to get him out and about before he's all casted up and becomes difficult for him to go places. I don't even think I'll be able to get him in the van with his leg sticking straight out. He's grown so tall (and with his hip in place he'll be longer on that side LOL)

Last Sat. we went to my neices grad party and Max must've been excited about it cuz he snorted the whole time. One of the PCA's at Sugar Lake had mentioned this to us about him getting excited and then making that noise and it was funny she had said that cuz we were just wondering that ourselves cuz I thought it was maybe cuz he didn't have his TLSO on (his torso brace) but, as I thought back when he hasn't had it on before he never made so much snorting sounds. Some at time but, like he did this day.

I had him in Missy's (my niece) bedroom for a underwear change and he sure liked her room. Painted blue and dolphins all over. He was looking around so cutely. Of course no one saw this cuz they were outside and it wasn't about Max that day anyways so.....

We've had some sad news this last week with some deaths in the family. Grandpa Jerry (and Karen) lost his little brother to a stroke (very unexpected), Grandpa Ralph lost his grandson to cancer and also lost his little dog Monie to old age. And Grandma Joanne was very close to them all so she's been through alot this last week but yet the strong women she is has been there for everyone and still would call to check on everyone else to see how we are doing (Jeremiah (grandson) broke his wrist, had surgery, askes about Max, calls her brother and sister in law to say she loves them and see how they are doing, goes to grad parties and stuff like that) I think GOD puts Joanne in the right places at the right time cuz she's so wonderful at listening and comforting people.

I know she's been the strength behind us to keep going when we just feel we can't anymore. We Love you so much Joanne.

If everyone could just say a prayer for Jerry, Ralph and Joanne and their families. They've all been through so much emotionally. Thank you

Hopefully, I can stay online (kinda know the prob) so that I can update again soon.

Thanks for all the nice guestbook entries. We really do love reading them and they really do help us to keep strong. I think as time goes on it gets harder (not easier like I thought) do deal with this all. I still shake my head many times a day just not believing that this has happened to us and now with summer vacation and Spencer looking for things to do no matter how hard I try to keep him entertained..........I wish so bad still that we were all back together like it should have been. Like I thought it should have been.

Lisa

Saturday, June 19, 2004 0:05 AM CDT

Hello,

I know it's really late this Friday night. My computer quit working on me starting last saturday and I couldn't get on aol at all.

But my forever faithful Brother in law came out and helped fix it tonight so that my computer is up and running again. THANK YOU, THANK YOU, THANK YOU SCOTT!!!!!!!

I'm to tired to update right now but, just wanted to let you all know that I was down (computer) for the last week and I've been trying to catch up on emails for the last hour.

I've been thinking of all of you the last week and was worried that you may have thought I stopped writting. I HAVEN'T. Max has sooo much to show us and I know there will be so much to tell in the up coming future. I feel it in my heart.

His Surgery date is July 26th.


Ok, night, night time. I'll update real soon. We really appreciate you all hanging with us and giving us such wonderful support and encouragement to stay strong and keep us going in our faith.
(I guess I could have updated after this long reason why I couldn't LOL)

Lisa

Tuesday, June 8, 2004 9:44 AM CDT

Good Morning to everyone,

I hope everyone didn't have any damage in those nasty storms and high winds last night. We woke up at like 1am and I swear it was like a tornado coming through. Jim and I were pulling things off the deck and moving our new deck table and chairs. The chairs were tipping over and my plants were flying around. Price we have to pay when we put the deck up LOL. But, I was actually scared it was soooo windy and strong.

I noticed some people talking about the poem that someone had written for Max and I. I have been telling everyone about it and how wonderful it is. I've printed it out and I'm going to have it framed with pictures of Max and I around it. I just love it so much. And boy what timing it was written in the guestbook. Let me elaborate as to why.

A few days after that I had one of those icky days where the tears just wouldn't stop. I went out to see Max and hopefully get him outside in the sun and fresh air but, he had gotten up early and was real sleepy and of course I just couldn't stop from crying so, I just left and came home and went to bed. Sleeping is my get away with hopes that when I wake up things will be better.......obviously they don't go away but, when I sleep they do. I had a dream about Max also the other day which was nice.

Max didn't have horse riding last Tues. cuz Susie's son was sick (I heard of like 3 kids being sick that week) so, I was going to update today after horse riding but, we had Max's Dr's appt with his bone Dr. yesterday with some.........well, not so good news in our eyes but, I guess in the long run it's to be good.

Max's left hip has come out like 75ow (it was always out some but we had hoped that we could improve it or at least keep it from getting worse through ROM and standing). It has moved out quite a lot since last Sept. The Dr. said he likes to have surgery done when the hip is out 50r more. So, Max will be having hip surgery within the next couple weeks I think (they haven't called with a day yet).

The Dr said that he usually does both hips when in there cuz usually the other one will come out too in time but, Max's right hip is and has been where it should be this whole time. So, I'm not sure if he will do both or not.

Max can still go in his stander and have ROM done but, no more horse riding for this summer. I'm hoping maybe come late August or Sept he can.

Max will be in the hosp for 5 days, cast for 4-6 weeks and then out patient therapy to get him stretched again.

They say this happens just cuz of his brain damage and that his muscles are just not holding his joints together. Plus he's not up and being active to keep things strong. Jim had asked the Dr about his bone density and he said that that actually looks somewhat better so this is good (Jim wasn't able to make this appt but, when I heard the word surgery, I had asked the Dr. if I could call Jim on my cell phone and put him on speaker. The Dr was very impressed with my cell phone and how well the speaker phone worked on it. Said he'll have to get himself one LOL)

I don't think this all has really hit me yet. I think of what the Dr said that he will be doing and all I can think of is "here they go chopping away at my baby". "Mutalating his body". I don't mean to be so morbib but, that's what I hear and see when they explain the cutting and replacing and adding this peice of metal and that screw. Our bionic boy is turning more bionic. Now if they could just add parts of the brain so he could talk or move his arms/legs.

The could news of all this is that the Dr said once this is done it would not have to be done again and his legs will both be the same length.

Max has proven to us that he's a very strong boy after all he's been through and I have such faith in him that he will come through this too with flying colors.

But, I sure would love some prayers for him from all of you to help us through this. You have been with us for so long and have seen all that Max has gone through and how well he has been doing, the support, love, prayers help him and us so much. Just look at how long Max has gone with no major problems.

Max see's his neuro next week and we are glad cuz Max's seizures are such big ones and they are so strong. He had one yesterday on the xray table and it came with such force that Max has a bruise on his face from having these in his stander. His face hits the head rest. It was just like BAM and his arms hit the table top hard and his face turned to the left so fast and hard. It really scared me. He also had one that his arms came out in front of him and his head raised up and his tongue came out like a mile long. It was actually really upsetting to me to see these. (oh and Max has pink eye pretty bad also. Just had to throw that in quickly LOL)

I guess this is why I have those monthly crying moments. These things that I have no control over and I can't change for him. I can't do anything for him more then what we have done. I just don't know who or where to turn to for other kinds of help that may work (and that we can afford. Max's parental fee for having MA went up again on us from $120 a month to $144 a month).

I look at Max and he just sits there so innocent of all that is to come to him. Not really knowing or understanding it all (who would at his age). He did sneeze a couple times at his appt and he lifted his arms up as if he was in a need of a kleenex and like now! It was like he didn't know where to wipe his arms off. This put a smile on my face.

Well, Spencer just woke up and I promised him pancakes for breakfast. Schools out now so, he says he going to get up early still but, hasn't been able to yet LOL.

Thanks for keeping Max in your prayers and thoughts and I will keep you updated on his surgery day and of course those days after.

Love to you all,
Lisa, Jim, Spencer, Maxwell

Saturday, May 29, 2004 1:14 PM CDT

Happy Memorial Weekend!

Typical Memorial weekend huh? We had plans to go to the lake but, guess that's not happening LOL.

Thought I would udate alittle not that I have so much to say.

Took Max horse riding last Tues. and we tried this bar that we can put on the horse but, Max had to spread his legs farther out to get on Toby and he didn't loosen up at first so we had him lay on his back and he rode that way for awhile and then his legs came over and down around the bar and we sat him up then. He was fine for awhile but wanted to stretch and couldn't so he got upset and started crying. We decided to take the bar off and maybe after he's riden for a few more times we'll try again.

Max has been crying off and on diff. days. Not real sure as to why but, hopefully it's just him expressing his dislike to not wanting to do what ever it is they are doing at that time (like he's cried in the stander and once out he was fine, changing his underwear he'd cry, maybe was being modest and didn't care if it :O) stuff like that.

The therapy teacher said his knees where more stiff then usual so the nurses have to take more time to do his range. I think they do it in the morning which is not a good time being then they are rushing to get him dressed and up for breakfast and of course with another child there now they have things to do for him too in the am. Doing his ROM is one thing that really needs to be done slowly and really take time with it. Can't rush through cuz then it serves no purpose. Needs to hold those bends. We have any appt with his bone/spine Dr in June so we'll see if they can xray his hips and hope that they are ok and still in place and that's not what is causing him pain in anyway.

The other day I had Max sitting up on my lap and I was talking to his nurse and I caught Max looking at me. When I asked him if he's looking at his mommy, he turned his head away LOL. It was so cute. The look on his face was as if "hey, talk to me not her" and his look on his face was like he was really listening what I was saying and was wanting to talk back. Wish you guys could see what I'm try to explain. But, lets just say he's sooo cute with his expressions. Like I've said before his eyes say a thousand words to us.

His seizures have been doing well again as far as not seeing so many of those big ones. They sure do come and go as they please. We have an appt coming in June with his neuro (lots of Dr's appts in june) so guess we'll see what she has to say and if she has any idea's as to what maybe we can try next. If there is anything.

Sure wish it would get nice out to get Max outside. I suppose the skeeters are going to be coming out now with all this rain and then we'll have to deal with that with Max. It's so hard to keep them off him even with skeeter spray on. You all know how that goes. Dang stuff doesn't work that well to begin with.

Well, that's about all I have to say

I would like to say to anyone out there who is a vet or has family fighting for us now in Iraq to "THANK YOU" for all that you have done to keep us free and safe in our country. No one can ever imagine what these men and women have/are going through to do this for us. We see it on the news, in remake movies and my heart just aches when seeing how so many get hurt or die and the things they see. I can't even explain how it makes me feel to see these things. That movie Band of Brothers was soo good to watch and really makes you think and realize that we shouldn't take what we have for granted what we have here even though we have hard times in many areas of our lives.

I pray for all those over in Iraq and that they all can return home safe and healthy soon.

God Bless,
Lisa

Saturday, May 22, 2004 10:27 AM CDT

Good Morning,

I know we needed some rain but, I think I've had enough. I need some sun. Wanna play in my garden and get Max outside for some sun and fresh air.

We had him out in the rain yesterday. There's a friend of ours that was in town. He's graduating from college and is going to be a physical therapist for kids so the convention center had all this therapy stuff. Wished we could have gone and looked at the vendor stuff but, we didn't belong to any group so we couldn't. Chris did a study on horse riding and the benefits of it for disabled kids and that's what he was going to show and talk about at the convention.

Anyways, Chris (our friend) is from Ohio and we meet him ......well can't really remember how we met him. All I remember is when Max had his accident Laurie was looking things up on the internet (or was it Scott?) and somehow hooked up with Chris. Chris knows and took care of a little boy who had a drowning accident.

So when we got a computer from our friend to keep Max's journal updated, Scott introduced me to Chris and we've been talking since online. He has helped us out alot with different info and getting me involved with other parents of near drown kids (the ponds group).

So we took Max and Spencer down to Minneapolis to meet him for the first time. Super nice guy and he and Max sure hit it off well. He just loves these kids and you can tell he'll be great at as a physical therapist with the kids.

Our visit with him was to short and wished we could have visited with him longer. He held Max and didn't want to let him go LOL. Max was sooo relaxed and talked to Chris with his "uh uh's". Told him Max was a good cuddler and so very nice to just hold on to and hug hug hug him.

Max did well for going out to a strange place. Though he didn't eat very well he sure was interested in where he was and looked around alot. Didn't sleep at all on us so, I guess the trip/visit wasn't boring to him LOL.

BUT those dumb seizures. Max seems to be having more of the big strong ones where he turns his head and arms come out. And the strength of these are almost to scary for me to handle. We see his nuero next month so hopefully she'll have some answers. I'd much rather have those small ones then these.

We missed horse riding again. Spencer was sick with pneumonia, cold, cough. So, he was home all week. The weather hasn't been real nice anyways but, guess with the indoor arena that really doesn't matter to much now LOL.

Max also is still able to let us know when he's upset or bothered by something. He had to go potty and needed help so once he was able to go he calmed down (was posturing all day) He had some crying spells to at night last Sunday. Don't know what that was about though. He was better the next day. THought he was getting pink eye but, now thinking allergies.

I'll put some pics up with out visit with Chris but, I should ask Chris first if it's ok to put his pics on here. I don't think he'll mind but, I guess I should make sure first :o)

Well, I gotta get going and get to the bank and run some errands. Think I'll work in the basement that I've been meaning to do for the last .........year? Years? Just a mess down there. Good thing it's the basement LOL. i have to work sometime this weekend too cuz I didn't get it all done yesterday. We all were so tired. Spencer was so tired he fell asleep on the bathroom floor (it's heated floor so it was nice and warm).

I'll let ya know how horse riding goes this week. I'm determined to get there this week. I hate not getting there with Max after so long.

Take care and God Bless,
Lisa

Wednesday, May 12, 2004 4:00 PM CDT

Hello,
Been meaning to update sooner but, the time flies and I lost my note on what I was going to update on so, I'll have to wing it with my memory LOL.

I missed saying HAPPY MOTHERS DAY to everyone. Hope all you mothers had a good day. We brought Max home for the day and spent most of it outside. He looks crabby when outside cuz his eyes just can't handle the brightness (even if it's not sunny out and Just cloudy) so, we try to keep sunglasses on him or a hat. We sat out in the yard and felt different things like grass, pine cones, sticks and tried to get his feet muddy for the nurses to clean later before bed LOL. He sure is tickelish on his feet. He'd pick his while leg up to get away from me tickling him.

He didn't go horse riding yesterday but he did go the tues. before. He didn't seize much at all. I told him to him again on the way there to take his nap now and I'll wake him when we get there. And sure enough he fell asleep and when we got there I told him to wake up cuz Toby is waiting and Max woke up. Like I said he didn't seize as much but some. He did look at Toby's ears when we asked him to and then Toby would walk on.

Susie (who runs freedom farms) has a bar that can be strapped on to Toby so that Max can hold on to that while riding. We're going to try this next week. Max will have to sit back farther on Toby which means he'll hopefully sit well in comfort cuz this will stretch his legs out farther. But it will be nice to see Max hold on (guess he's been giving Susie the squeeze on her hands when she hold them up for him so maybe he'll squeeze on to the bar) and it will help him sit up straighter. Give him more freedom to balance himself more too

Max also had some crying out the other day. Once in the stander (which he did the week before) and then later in the night. Not sure why but, he stops when they change his postion or vent him.

His spots are going away that were on his back. Never figured out what they were from or what they are. He had his pump refilled last Friday and that Dr didn't know what they were so. We also had his torso brace adjusted some til we see that Dr. come this June. Max also see's his neuro in June too.

Max pulled his mickey button out while stretching. He didn't cry then. Tough boy. His arm gets caught on it cuz when he stretches he slides his arm down his tummy and of course flips over his button. Though this is the first time it's happened, I'm surprised it hasn't happened sooner.

Well, I think that's all I was going to say this time around. I feel there was something more. I'll work on getting the pics up from mothers day. I also have to figure out how to take pics when horse riding. Jim is actually the photographer with this new camera. I'm not having much luck with it. Tried to take pics of spencer in his school play and they allll came out blurry.

Good luck to all going out fishing this weekend. Jim is going out and I think Spencer and I will hit some garage sale on the way out to see Max and work in the garden.

Also, Grandpa Jerry is home now and doing better. Thanks for the prayers for him.

Lisa

Saturday, May 1, 2004 8:05 AM CDT

Good Morning,

It's sunny out but not very warm. But, I'll take the sun any day.

Oh boy seems like when spring hits I have things to update about with Max. Just love being able to tell about things Max shows us that look so promising. He has so much expression in his eyes, it's almost as if he is talking to us.

First, I took Max horse riding again last Tues. He slept all the way there and right up til we put him on top of Toby. But, Max had alot of seizures that day and I think Toby knew it too. He was antsie and a little jumpy where other days Max may have 2-3 big ones and it doesn't matter to Toby. When we took Max off Toby, Toby just stared at Max as if to say "Hey, what's up with you today?" He just stared at Max, it was so weird to see that.

But when Max had a seizure we would stop Toby til they they were over and Susie would tell Max to look at Toby's head with his eye's and Toby would ride on. I swear Max looked right at Toby's head and then looked at Susie. Max did this like 4 times when we asked him to do it. There was no hesitating or anything. BAM he looked right at him. The really neat thing too is that when the School teachers did they're every move counts they noticed Max wouldn't look down but could/would look up and to the sides. Wish his teacher was there to see this cuz Max had to look down to see the back of Toby's head. And he did it more then once! :o)

On the way back to Sugar Lake, Max was having lots of seizures also and so I put the CD in that we listen to all the time (Point of Grace. The one I was talking about before) Here I go again but, I swear Max had stopped seizing and looked at the front of the van (his head was turned to the left) and had this nice beautiful calm look on his face and kinda a wonder look as to find where the music was coming from. He ended up only having like 3-4 seizures after I put the CD in. Where he was having them one after another. I thought that was interesting. And if I had the camera, I would have taken his pic cuz he was sooo cute looking with this look.

The other day when I was out there and Max was in the stander, he was sleeping away while standing LOL. But I was still talking to him and kissing him and touching his face. Well, he made a big stretch and I swear (sorry for all the swearing today) but it sounded like Max said "ohhh Nooo" while stretching. His mouth formed to the words and everything. Now he was sleeping but, when he woke up I tried to get him to say it again but, no luck. His mouth would move and he would make his other chatter he does but, just couldn't get the words out. I know I heard him say this before a couple years ago when I had him on his big red ball. So, maybe he can say it just every so many years LOL. Ok, hopefully the time will shorten up and he'll say it sooner then in another 2 years.

The nurses have been doing the schools schedule with Max and one is finger painting with pudding. Terri had said that when she had did this with Max he didn't like it. His fingers opened way up and he pulled his arm back. I've seen him do this before when he doesn't like the feel of something. It nice to know that Max can pull back when not liking something or feeling pain (such as when they draw blood). So if he got his arm/hand pinched in some way from stretching or seizing, he would pull his arm away. Know what I mean.

He likes the water game they play with him where they fill a tupperware of water and he has to find the floating toy in it. They help him feel for it.

Jim and Spencer went out there the day it was like 90 out. Took Max for a stroll. Guess he's getting to big for his stroller. I'll have to check and see for myself if we can fit him in there a way so he sits up more so it fits. I don't think they come any bigger. He's gotten sooo tall.

Did I tell you about Max's spots all over his back? Can't remember. We were thinking his torso brace was not fitting right being he has gotten taller. But, now some are showing up on his legs and arm. The ones on his back are going away some. The blood test that came back are all normal and there was no growth on the test they did to see if it was fungal or whatever the Dr said for it being a rash of some sort.

We have like 3 appts coming up with 3 diff Dr's the next couple months so maybe they can figure it out.

So once again we've had some really good days and reports on Max. The spots are fustrating no knowing what they are but, the don't seem to bother him. And of course the seizures are still a pain to deal with.

We were going to bring Max home this weekend but, Grandpa Jerry went into the hosp last Thurs. His diabetes was all out of wack and he was having a hard time walking and breathing. He's there over the weekend in ICU so, we thought best to not bring Max home til we know more on how he's doing.

Sure could use some prayers for him if you guys wouldn't mind. I know first hand that all of you guys praying for us sure does help:o) and we really want Jerry to get better. He went down to Arizona last winter and really enjoyed that and felt good down there (healthwise) and we would like to see him beable to go down there more and with Grandma Karen. Also they added on to their house and it's just beautiful so, he has lots of things to enjoy still and look forward to.

WE LOVE YOU JERRY SO MUCH AND WANT YOU TO GET BETTER SO WE CAN GET TOGETHER AND HAVE FUN AT YOUR FAMILY REUNIONS AND BONEFIRES.

Well, city clean up day and we have tons of stuff to get rid of......where does all this junk come from is what I want to know. I don't remember ever buying junk! LOL

Thank you, Thank you, Thank you for your continued prayers for Max and prayers for Jerry. We also love the guestbook entries. They make us feel sooo good and some give me those feel good cries.

We have so much to be gratful for. Oh and Sugar Lake looks like it will be getting some more respite kids there so that should help out alot for them. I know I've been praying for them (and for some extra money and I got another cleaning job the other day). Right there is 2 things GOD has shown me that he's hanging out with us and helping us :o) So much to be thankful for that's for sure.

Lisa

Thursday, April 22, 2004 8:45 AM CDT

Good Morning,

How's everyone doing? We're doing well over here. Sure could use some more 80 degree weather though. I just loved that on Sunday.

I got my Van back so I've been busy this week with appts and I was to be gone today too but, was cancelled so gives me time to get the house cleaned up and get some phone calls made.

I just got around to reading the IIIP that the special ed teachers put together for Max and it is sooo good to read. It was that every move counts test they did on Max and I wish there was a way of letting you all read it cuz it sure is uplifting to see what they see in Max and his capabilities.

They wrote down what the hosp. was discharging him as with all his problems and then you read how some of these probs have been sovled or gotten better.

We've noticed that Max always turns to look at you when you walk into the house. If he's on the recliner and you walk in and say HI MAX his head goes to the right (cuz that's the side we walk to) and usually by the time we get there his head is turned ready to greet you.

Max went horse riding for the first time on Tues. Of course he started to fall asleep on the way there and I told him he gets a half hour to sleep and then he better wake up for horse riding cuz I'm not paying all this money for him to sleep through it. So, when we got close to being there I told him that we are almost there and he better start waking up. Well, his little mouth puckered and he tried to open his eyes and then he fell back to sleep so I told him again to wake up cuz Toby is waiting for him and he tried again and the all of a sudden his eyes were wide open and he was looking around. It was really funny to watch him try and wake up.

So, we got him on Toby and after a long stretch he relaxed and gave us A BIG SMILE once he got on Toby. And this wasn't a seizure smile cuz his head goes to the right with those. His head was down and he was looking at Toby and then this smile came.

He rode Toby as if he never stopped riding for the winter. He picked up right where he left off last fall. He had good head control (I hardly had to hold on to his head) and Suzie said she felt his muscles working in his upper body like he was doing last fall also.

I asked Max to look for Toby's head and he was looking to the right some and I asked again where Toby's head is and he looked right at Toby's head.

He had a maybe 2 big siezures but was wide awake and looking around the whole time. There were some new side walkers and another lady observing and he seemed to be looking at them alot as if "who are these people?"

Then after 40 mins of riding you could feel he was tired. His body would just go limp. Heck I would go limp to after riding for that long.

When we got back to Sugar Lake, it was lunch time and Max just gobbled his food down. I've never seen him eat so well and he didn't even take the time to seize he must've been so hungry. LOL

Max also had a physical with his peds Dr here in town yesterday. Max has some (ok, lots) of spots on his back and we (and the Dr) think pretty sure it's from his torso brace. Being he has grown taller quite a bit since he was fitting for that. I go to childrens west May 7th and I think the guys there could tell us for sure if we need to make an appt down at Gillette to have him fitting for a new one. I hate this cuz it'a a 2 day all day process.

Max's Dr said Max looks really good and was very happy to see how well he's doing and how tall he's getting. She thinks his weight is fine but could use maybe a few more pounds. She doesn't want alot of weight on him (what a child his age should be) cuz he would be to hard to care for and being heavy would cause more probs for him maybe.

He should be 50 lbs on the low end of the scale for his age and he's 45 so, maybe 5 more lbs wouldn't hurt him.

They are checking though just to make sure the spots aren't some kind of rash and also are checking his levels on his seizure meds and some other blood work like for his liver and hemagloben and CBC and all that whatever stuff it is.

When we were waiting for them to call him to have his blood drawn, I was giving Max something to drink in his g-tube and had him hold his water (he was sleeping the whole time LOL but, he held on to it well) and of course I'd still talk to him and kiss him millions of times.

Just when he finished up his blood work, one of the ladies in the waiting room came in and said to me, "I just feel I have to give you a hug" and I said "why?" and she said cuz I was watching you with your son and can tell you are just such a loving and caring mom by the way you touched, talked and kissed him so much. I think you are just such a wonderful mom and so loving and on and on she went and of couse the hug. Kinda felt embarrassed but yet almost started to cry. To be praised so when yet I feel so guilty still at times for so many reasons (the accident, having him move, etc) sent my emotions in all different directions LOL.

I said thank you and she said "God Bless" and we left. I guess I did smile quite a bit later feeling some what proud and then of course had to call Grandma and tell her about the appt (wondering about those spots).

Oh this was weird too. When we got back to Sugar lake of course it was lunch time again and Max had one of those siezures where his head kinda falls forward and arms out and was hanging by his side. I went up to him and told him to put his arm back up on his lap and I must've startled the heck out of him cuz his head bounced back up in his head rest of his chair. He didn't seize for this. It was a "whoa" "Ya scared the heck out of me Mom" The nurse and I had to laugh cuz we've never seen him get startled like this before to make him jump so.

So we've had a really good 2 days. Now just waiting for the warmer weather to get Max home and outside with us on the deck before the bugs come out.

I'll put some new pics up too.

Thanks for the support and love and many prayers. We're excited for Max to show us that he's still working hard to be more then he is. I really think he recgonized freedom farms and Toby and was excited to ride again. Looking forward to more riding to see what more will happen being he picked up where he left off last fall.

Lisa

Thursday, April 15, 2004 8:02 AM CDT

Good Morning,

AHHHH! Finally Spring is in the air. Feels good to have some warm weather doesn't it?


I have a baby Belle (our kitty) on my lap so excuse the spelling if it's worse then usual LOL.

I have tons of new pics that I can't wait to put up on the website now that we have this digital camera and Scott showed us how to get them from the camera to the computer. So look out. I wish I could save the pics so if you miss any you could go back and look at them like the journals but........not possible.

Max has a regular physical coming this wednesday and I had asked his neuro if we could get a level done on his one seizure med to see where he's at with it. Doesn't seem to be helping much since we went up on it.

He still has days where they are good or he can have clumps of seizures that never seem to quite.

We're so tired of dealing with them and just wish they would go away. Or at least get smaller. He mostly has those big ones now where he makes a gasping noise and arms go out to the side and legs up and then he starts to smile and kinda laugh out (makes a sound like AHHHHH)

The school teachers were out last Tuesday and set up a schedule of things that the nurses can do with Max. Some idea's other then the same ol same ol. Looks really good and fun. Basically just alot of different ways to get Max to use his senses (smell, sight, touch).

Other then that. Things seem to still be about the same.

He still chats away with us when we talk to him and is still sleepy alot LOL. Hopefully horse riding will bring some new changes again with him.

Lisa

Tuesday, April 6, 2004 8:59 PM CDT

Good evening,

Boy it's been nicer here the last couple days then in Florida. The eves there were pretty chilly.

We had a pretty good time all in all but, like I said it was way to much work to have fun. Just running and running and no R&R. Now I know why people go back each year. They just pick out like 2 things to do and then rest by the pool the rest of the week. Even Spencer was getting cranky in the mornings trying to get him up.

We were going to go to Kennedy Space Center/ocean and Spencer really didn't want to go to the space center. We made him take a shower and he was in there for a long time. Told him to get out and he did but never came out of the bathroom. Said he didn't have a dry towel after 10 mins of being in there. So we gave him one and then Jim went in after he came out and here Spencer had drawn on the mirror from the steam a Rocket and wrote "I don't want to go" and drew a line pointing to the rocket. We had a pretty good laugh over that.

I prayed so hard not to get sick right before vacation that I ended up getting sick while on vacation. Guess I wasn't exact in my prayers LOL. I got the worst head cold turned to chest cold. I think I'm getting better now. Comes and goes. Hope Max doesn't get it cuz there was no way I couldn't go see him til this ick was over with. I kissed his neck alot.

No we all pretty much decided we are more the nature type people and would like to see more nature stuff like maybe Yellow stone and things like that and then just hang by a lake and go boating. Oh sure the rides and that were fun but, not 5 days of it. Just not time for laley gaging around ya know.

AND IF MY NOSE DOESN'T STOP PEELING, IT'S GOING TO LOOK LIKE MICHEAL JACKSONS!!!!

I did cry a couple times thinking of Max and when talking with people. Felt like I needed a shirt that said "We do have 2 son's". Just felt we weren't a whole family feeling ya know, leaving Max behind. I feel that alot when we do things and he's not with.

Our Van's lift's door isn't working so we have to take that in which means Max didn't go with us out to eat on Sunday with Grandpa Jerry and Grandma Karen and the rest of the family. Easter he'll miss too out at Grandma Joannes. We just don't have a car that that would fit his wheelchair. Truck won't fit Max at all with his car seat. Max will also miss his first horse riding session cuz the van will be in the shop then too. I had to reschedule a Dr.s appt also. GEEZ.......we really count on that van now. Max has gotten soo tall that it's pretty much the only way to travel with him.

And I haven't heard yet wheather Max is staying at Sugar Lake or having to leave.

He's been having some rough nights not sleeping well and has had his sleepy med like 3-4 times this last week. don't know if it's the time change, us being gone (and he's mad at us LOL :o( or if he's coming down with something. Maybe it's just his usual thing he goes through every now and then.

So, here we are back to reality. Doesn't feel real good some days. But there's this song I listen to alot from Points of Grace called "Better days" It's really good. I'd sing it for ya but I can't sing well (or I should say at all). Maybe I'll type some of the words for ya next time. I'm to lazy to go to my car and get the CD.

We have pics for ya but, I need Scott to come out and show me how to get them from our NEW DIGITAL CAMERA on to the computer that I've been talking about getting. Yup finally broke down and spent the money on one. Really nice though and we always know when we get a good pic or not and not waste a roll only to find out they turned out so unflattering shall we say LOL.

Jim and Spencer just got back from seeing Max and jim said his seizures weren't to bad tonight and Max ate a whole sucker. He was really looking at Spencers stripped shirt. Max always like stripped shirt. This is good to hear but, it's been like 2am that's he's been having trouble with sleeping.

Well, I hope everyone has a nice Easter.

GOD BLESS,
Lisa

Sunday, April 4, 2004 0:09 AM CST

Hello to everyone!

Just got back from vacation and going through emails, bills (UGH!) and unpacking enough to get to bed.

Give me a couple days here and I'll give you updates on Max and vacation time and all that. Called Sugar Lakes a couple times while on vacation and he was doing good. So, that was a relief for us while soo far away.

Sure did miss him ALOT. And thought about him many, many times. Cried a few times there also. Especially the fireworks at Magic Kingdom when they played the song "When you wish upon a star" and had these neat fire works going to the song with one firework shooting like a star. Man did I wish and wish for many things for Max and us.

OK, I should go. The clock has to be turned ahead so it's really like 1:30 am.

I'll update soon as soon as I get out and see Max tomorrow.

Take care and God Bless,
Lisa

Friday, March 26, 2004 11:41 PM CST

Hello,

I know it's kinda late. Just wanted to say see ya all in a week.

We bought a digital camera so the pics will be rolling in now LOL.

Enjoy this nice weather we are having and keep it around for us when we get back.

Love to you all and thanks for keeping Max in your prayers,
Lisa, Jim, Spencer and Max

Monday, March 22, 2004 8:18 AM CST

Good Morning,

Heard it's to be nice this week. I hope so. Could use an uplifting warm sunny week.

Well, Max is 7 and he had a pretty good weekend. He did seize alot it was the bigger ones. He made quite the noise with his snorting also. So, it wasn't a progressive weekend really.

We spent most of the day Sat. just hugging and kissing again. He's sooo cuddly you can't help it.

The evening nurse at Sugar Lake had called to wish Max a happy B-day. She missed him and when I had the phone to Max's ear and she was talking to him he would look right at the phone. Cute.

I have tons of pics but have to get them developed of course. Uncle Scott took some so if he sends them to me, I can get them up on the website.

Troy and Carol, KatieMae and Josh stopped over Sunday to see Max for his birthday. Then we went to Aunt Lauries and Uncle Johns for the party for all 3 of the boys.

Had a good time with lots of laughs. Max seemed to enjoy it with his cooing talk. Petey, the weiner dog Laurie has, sure likes Max. Especially when Max was eating lunch.


Well, I have to run. I have a meeting with the county people re: Max's finances and Sugar Lake. Seems there is some mix up and could cause Max to be discharged from Sugar Lake if not cleared up. From what I was told anyways and not from the county. Breaks my heart at that thought of Max having to leave there if this happens. I could just die cuz all is going so well over there and the nurses do such a GREAT JOB AND THE SCHOOL IS SO WONDERFUL.

Max really needs to be out there and get the care he gets. This has been bother us all week and just makes us sick to our stomach.

But I guess I'll know more sometime here. Probably not before vacation so, hopefully we can have a good time without worry so much and making calls back here to see if all is ok so far.

Well, time doesn't seem to want to stop for me and sorry this is so not clear but, I think I can explain more when I find out more.

Please keep Max in your prayers that he can stay at Sugar Lakes and this finacial stuff works out so he can. It's the best for him (I was crying this time last year trying to decide if he should move there and now I"m crying this same time as last year cuz I feel he really needs to stay).

Thanks so much
Lisa

Saturday, March 20, 2004 1:17 PM CST

IT'S MAXWELL'S BIRTHDAY TODAY. I WOULD FANCY UP THIS


"HAPPY BIRTHDAY TO YOU"


BUT DON'T KNOW HOW TO CHANGE THE FONTS AND MAKE COLORS FROM THE CARINGBRIDGE SITE.

BUT HE'S THE BIG "7" TODAY!


WE LOVE YOU BUNCHS OUR BIGGER MAX



LOVE MOM, DAD, SPENCER

Tuesday, March 16, 2004 8:00 AM CST

Good Morning,

AHHHH! The sun is finally shining. But the weatherman just said clouds coming with sleety snow. Whoopie :o(

Want to thank you all for the nice guestbook entries. I'm feeling better. Actually yesterday at our Special ed teachers meeting went really well and Jim and I left feeling very up and happy about it all and ABOUT MAX (Jim was able to make it to this meeting and he said he was so glad he did cuz to hear these things from those who really know what to look for and see what we see and believe it is Max doing these things and not just our imagination.)Our bigger Max is working hard to communicate with us in any way he can (but that book and brandy still sound very good Aunt Bev and in the whirlpool on top of it :o) Hope all is well with you and Uncle Bob and he is feeling well.

Ok, the meeting. I actually told you pretty much what was said before but.....a few other things.

Vision: This teacher said that when they did this new eval called "every movement counts" she said that they did not encourage Max in anyway which was hard for them not to do cuz that's what they're suppose to do. He did all this on his own. He was alert the whole time (hour and half) and only had some small seizures.

She said that his strong points are his smell and hearing. He will respond in some way to sound whether looking or some body movement. He will look in the direction of sound and has shown this to them like with the tamborean (sp?) and that he can look up easier then down but that he does try and can get his eye's in the direction of sound just may take him awhile.

Like I had said with the smell, sweets he would move his lips and with baby lotion he would just melt and relax she said.

With feeling things. Max has learned not to open his hands when he touchs things that vibrate. He used to be real sensitvie about it and now can hold his hands on these things and she said he could hold a ball with his left hand but not his right (Actually that was OT's deals but OT, speech and vision worked together so that they all agreed on what they saw). We always thought he'd be a lefty cuz he would do lots with his left hand. His left side they said seems to be his strongest.

His finger switch: He knows it's there and will work it but whether he puts the two together that if he works it, it sets off a toy. They are still working on this. She said the goal she would like for him to reach is for Max to figure out what he wants and reach out for it and get it and be able to play with it himself (yea know like being able to hit a button to play music or use the finger switch to make his toy go so that we don't have to always help him.)

She said his vision can be on one day and off another in that he is processing what he is seeing at times and others just the blankness in his face. She feels he see wells and does recognize things. Definatly the nurses and us and will look to us when we walk in. We need to place things to the side of his vision and then bring it out in front of him for him to see and recognize them.

Speech: she said the same about Max with what the vision teacher said and that she notices his talking when you talk to him. He was actually talking up a storm when the nurses and Jim and I were talking. Almost as to say "Hey your here to talk to me not them" He definatly will make his sounds when you talk to him and when you stop he stops or he may talk to get your attention.
He did respond to a question we said. He was in the middle of talking and had to swallow so he ended up saying "Gyeah". Sound just like YEAH and we laughed cuz it was appropriate to our conversation. Max lips would move too when I asked him to move them when he talks. JoDee had noticed that when you rub Max's head he'll talk and when you stop he stops talking :o)

The speech therapist lady also said she had noticed but not sure if it meant anything but she always ends her sessions with a story and was reading Max the " The very hungry catapiller". Not a sad story but, when she was done Max looked at her and had tears in his eyes. Kinda like he was sad that the story had ended. She said though when reading to him that he is very alert and looks around from her to the book or just at the book.

Physical therapy was about the same and that Max is still pretty loose he's not all the way flexable (who is LOL) but he's not for the worse.

We talked about horse riding with the PT teacher and she would like to see Max ride. The vision lady really was impressed with Max's riding saying to the PT teacher that he's like a different little boy when up there on Toby. And that he has great trunk control, works hard on head control, seems to really enjoy it just by Max's expressions on his face at times. I really can't wait for this to start again and it well come April.

So, all in all, Max has come quit aways since this last triple I P meeting 3 years ago. These Annendale special ed teachers are way better then Buffalo (sorry to say) OH, I like the early intervention teachers they were great but the elementary ones............they didn't have time to come to the house and work with Max like these guys from Annedale are and really, really are pushing him to do his best and will never give up on him to keep trying.

Max comes home this weekend and I'm excited for it so that we can really enjoy our fresh out look and celebrate his birthday with our Bigger Max who has really grown into our miracle child who is so strong and so ready to get on with his life the best he can. Time for Mom and Dad to do the same :o) and not dwell on those what ifs anymore.

I can't thank the Lord enough for such strength he has given Max and to have Max show it to us to give us this strength also.

God Bless all of you and thank you all so much also
Lisa, Jim, Spencer and Max

Friday, March 12, 2004 12:04 AM CST

Gosh, Hello, Hello,

Didn't realize (again) that I haven't updated in awhile. Guess I was waiting for something to update on.

Things have been going just about the same with Max. Nothing new. Sleeps alot during the day and is awake more in the late afternoon, early eve.

Siezures are about the same since we went up on the Celontin but, I don't think it's been 2-3 weeks yet. I guess I'd have to check the calander.

Max had his pump refilled last Tues. We were to go on that Friday when it snowed so bad but, Jim's school closed and they never close so I figured it had to be bad driving and from listening to the news so I canceled it (the clinic is over in Minnetonka area) and lucky us they got us in that tuesday or we would have had to drive to St. Paul.

Max is still making his talk alot. Especially when I talk to him while he's trying to sleep. I would ask him if he's really sleeping and he'd make his talk "probably telling me to be quite cuz yes he is trying to sleep." LOL

I had one of my bad days the other day. Guess I just can't be happy for to long without having one of those icky crying days.

Just feeling bad for Spencer and going to Florida without Max. He wished he could have invited a friend so that gets me to thinking if Max was ok he wouldn't be asking this.

Then a staff lady from Gillette was at the clinic when we were filling Max's pump came to say HI to Max saying she hasn't seen him in so long. She told me how tall he has gotten. All I could think of was "Yeah, tall" that's about all you can say about him isn't it. He's just gotten so tall. So that started my whole "why did this happen to him, to us" I put Max's arms around me to give me a hug and he goes into his stretching and his arms got really tight around my neck so it did feel like he gave me a big bear hug which got me crying just in time for the Dr. to walk in. LOL Felt good to feel him do that though even if it was a stretch move.

Then I watched an Oprah show that talked about Miracles. Big mistake, made me grumpy then.

So off to work I went in Tears hating my job and just not being able to push that darn vacuum anymore (need that vacation). The weather is sickening too. Now it's sunny but cold.

That kind of stuff LOL. I did alot of sleeping this last week and it sure went fast cuz now it's the weekend.

Spencer has a friend coming over to spend the night Sat so we are going to take them to the Science Museum for something to do to get them and US out of the house (otherwise they just play video games, sick of them too :o(
They have robots there now so that should be interesting.

Max's birthday is coming up the 21st so we will celebrate it with his Cousins who have theirs too, Ezra and Jeremiah.

Sorry that most of this update was about me. Know that's not what it's to be about but, it feels good to get it out.

Max has his school meeting on Monday which I can't wait for so, I can update next week to tell ya about that and how it went.

Take care and thanks for letting me vent this time round :o)
Lisa

Tuesday, March 2, 2004 8:45 AM CST

Good Morning,

Well, Back to cold weather again. I hope it doesn't stay long. I really like that spring like weather when in the 40's. I actually got some of my outdoor Christmas lights taken down.

One the last day I updated the school therapy teachers were out to evalutate Max. They have to do an eval every three years. This was exciting to watch but yet I didn't want to inturrupt to much and have Max loose concentration so I just caught a few things.

They have a scale of 0-2(to being the highest and a good thing :o) and I heard alot of "do you think that was a 2?" "Oh yeah, definate 2" I'm thinking "Oh good another 2. You go Max. You rock little Man."

So, some of the things I did catch was when the teacher held a switch that plays music over Max's head (she stood behind him) and when she held it over his head he would look up some and then she would move it off to his left and his eye's would go there and then the right side and sure enough his eye's would move to the right trying to find this sound (he had some difficulties with the up and right but, did make good effort you could tell)

Another was when she would hook up his finger switch to his finger but this wasn't plugged into a toy, she would just turn on a twirly toy that lit up. When she would shut it off we'd watch to see if Max would move his finger to get the light to start again(that's how they work when you have the switch actually plugged into a toy).

Well, sure enough we'd see Max's finger move to work the switch and then she would turn the toy back on for him. Shut it off and sure enough his finger would move again. Another "2" for Max!!!

The speech therapist told me later that they had done some smells with Max and when they had him smell something sweet or the cinnimon smell, his mouth would move as if knowing this is something that would be good to eat. Then they had him smell like Lilac's or more flowery smell and his mouth didn't move and he made more of a scrunchy face.

We have a meeting come March 15th for the full evalutation with the whole group of therapy teachers so I can't wait. And then this is when we make more goals for Max and what they'll work on with him.


I started that Craniel Sacral therapy with Max. Still can't really explain it to you. What I don't understand doesn't seem to stick in my head. But, I'll keep doing it with him for a few more sessions and see if we see any changes. If not I"ll quit. We did go up on one of his seizure meds (ok, we are going to as soon as the Dr faxes the orders dang it) So, it will be hard to know if it's the seizure med or the theapy.

My mom's wedding went well. Nice weather and all. And she sounds very happy when I talked with her the next day.

Well, that's about it for this update. I have to get my butt moving and go see Max. I'm trying to get out there earlier but, it doesn't seem to matter. He seems to be sleeping everytime no matter when I get there.

Take care,
Lisa

Tuesday, February 24, 2004 8:49 AM CST

Good Morning,

Just got Spencer off to school. He told me last night after I got home from work (9pm) that it's hat day today at school and of course we have no cool hats around here. So we had to make a trip to Walmart before school to get a cool hat. Then of course me and Walmart........I saw they had their shirts on sale so I dragged Spencer through there to pick some out(3-5 dollar shirts which is super cheap).

I'd like to say a quick note to Aunt Bev and Uncle Bob saying I'm sorry to hear of the prostate cancer and glad he's on his last treatments. I'll keep you both in my prayers and would like to ask all those reading Max's website if they too could please add Uncle Bob in their prayers. Please keep us up to date on how Uncle Bob is doing, either personal email or in Max's guestbook. We love you both very much.

And PZ, your last guestbook entry (as Joanne pointed out) is quite the coincedents cuz this last weekend when we had Max home he sure was looking around at things we'd ask him to (your entry talks about Jesus healing the blind).

We know Max can see and that he has cortical blindess meaning he doesn't process what he see's but, We asked him to look at various things and he would find them and then look at them. He even turned his head to look at dad when Jim asked him to which was a big thing for us cuz he usually just turns his eye's that directions where this time his whole head came with :o)

His therapist for vision see's Max today so, I'm going to be there to talk with her.

I had Max looking at a vision/hearing website on the computer that was interesting and he seemed like that but, still likes watching Spencer playing his games best of all.

Remember I had said Max received botox a week or so ago. This seemed to help some in his wrist and fingers but, his arms Whoa...to much. I would see his arms hanging down along side his wheelchair (not sure how they got there). But, he still can move them when he stretches. And he has strong muscles when he stretches so I take this stretching a good thing to keep his muscle tone up.

At lunch the other day I was trying to get Max to give me some real good teeth chopping chews and of course a chunk of the cheeto's broke off but, Max handled it well by biting a few times and then moving it with his tongue and swallowed it. I panicked at first thinking he'd choke on it. They melt pretty good in the mouth so that's why I use them for practice and he may not have chewed it to mush but, it was a start with the few chews he made and then the swallow.

Max and Jim had a really nice, relaxing whirlpool Sat. eve. (til mom spilled water all over Max's face while washing his hair. He didn't care for that to much).

Sunday was a very, very, very (did I say very?) Lazy day. Max slept for the good part of all morning after breakfast. He slept well the night before with no posturing which is super nice for us cuz he postured at night everytime we were bringing him home.

So, we have been counting our blessing again at how well Max has been doing. I find myself (and Jim said too) that we are more up in spirit then down. That we have to keep on this path we are on and to keep thanking the Lord for Max's good health, the wonderful eye contact and the continuing of healing that is taking place in Max. For all we know there could very much be healing going on that we just can't see and will see at some time when Jesus is ready for us to see it.

I'm reading a really good book "Prayers God Always Answers" by Nancy Kennedy. It's really funny but holds so much truth in how are prayers are answered. Basically it's about how are prayers aren't answered in the way one would expect or like but yet they are, just in a different way that we wouldn't expect.

I also want to say "THANK YOU" to Sugar Lake nurses for taking such good care of Max and for putting up with my constint changes in what I would like done with him. They are very patient with me :o) and always try new things that I ask of them. They are the best of the best and are appreciated more then they realize.

Take care,
Lisa
PS. The pic I'll put up on the front here was taken by Uncle Scott. Max and I were giving Eskimos kisses.

Saturday, February 14, 2004 11:47 AM CST

Happy Valentines Day to everyone,

Thought I'd quick update before my hair cut appt. (like you care about my hair LOL)

So, what can I say is new. Well, Max had botox last Tuesday to his arms to see if we can get his wrists and fingers loosened up some. I'm sure you all know what botox is right? The stuff (shot) people get on their face for that muscle betwee their eyebrows like I have. Yes a muscle not a wrinkle. I tried to get them to give me a shot of any left over being my insurance has already paid for it but, they just didn't seem to see it my way. So, I'll forever have this MUSCLE (not a wrinkle) between my eyebrows but, I guess it just goes with my 6 pack that's on my forehead. Can't say I sit around all day doing nothing. I guess I'm constintly working my face out. LOL

I'm really thinking though that this botox for Max may not work being when he's sleeping and relaxed we can stretch his wrist out straight and also his fingers. It's some what tight but not contracted to where it's frozen. I think Max purposly hold his fingers tight in a ball. Especially if you try to open them and he resists you. We've tried all kinds of braces so this was the next choice to try.

Did my taxes the other day (well, I didn't. I took them in) Guess I can't claim Max as a dependant being he's not really living here. I had a problem with this and then realized it's not so much about the money but that the wording "claiming as a dependant" hurts. Like he's not dependant on me (us) anymore and I know he is and I still buy tons of stuff for him and make sure he's getting what he needs from Sugar Lake and that they are taking good care of him (which I know they are always doing). That rip in my heart just keeps getting a little bigger some days.

But, I do come back to reality knowing what's best for Max and how well he is doing out there getting the 24 hour care that he needs and seems to love.

One of the days I was out there, Max was sitting in his recliner just waking up and I told him Mommy is here wake up and right away he started to talk to me with his "UH, UH's" and his little lips just a moving away.

Oh when we were at the Dr's for his botox, I had Max up in his chair giving him some lunch and told him to find the picture on the wall and he sure was looking around until he spotted it and then his eye's just stopped and stared at it. If only you could see the things I see when I tell you about this stuff. He's sooo darn cute. When I asked him to look it's like he listened to me and everything and until he found that picture, I think he would have kept searching for it.

We are in the process of trying to decide on this one seizure med, if he should continue with it or not. Oh heck. This is such a long story I can't even get into it. But, lets just say we can only get on kind of dose with the med and if we go up on it, it would be to much for his size so, it's either we take him off and see if it really helps or just keep it as is and wait til he gains 22 pounds in the future.

I would like to say to PZ about her guestbook entries. I see others have written about her wonderful entries and I know Joanne and I have talked about it. I was actually just thinking that I haven't seen any from her latly and then that morning I saw her entry.

PZ, I really do love reading your entries. Obviously there are others out there too who get inspired (sp?) by what you write. Like I've said before they always seem to hit home with me just at the time I need them. Ok, maybe it's cuz you read my updates and go from there but, that's what I need and you pick up on that and it really does make me feel better.

I can't thank you enough for taking the time to do this for me and for so many others (who we may never even know) how it helps them.

I also have some exciting news. My Mom is getting Married next Saturday!!! She's has met a guy down in Texas(yes a real Texan) and they fell in love. I'm so happy for her and we met Jim, last summer and he is a really super neat guy. I wish we could be there for their special day but, We will in heart.

So other then that. We've all been good. I still have my terrible crying days and then those happy ones. I'm Still in shock that this has happened to us and I can't believe this is how our life has turned out for our children. I know I've said this before too but, this all still hurts just as bad as the day it happened. I try not to think about it but it creeps into my darn ol head from time to time.

Ok, I'm not going there. LOL No need for this. It's Valentines day.

I'll try and get some new pics up soon. Gotta dig some out, there laying all over the place.

Take care,
Lisa

Saturday, February 7, 2004 10:46 AM CST

Hello, Hello,

Man do we have some snow now Huh? Kinda nice to see instead of the dirt and brown grass. We took Spencer sliding and snowboarding last Sunday. It was fun and we got very hot with the walking up the hug hill. And Jim and I sure could feel that we've been sitting around doing not much of anything for the first 4 months of this winter. Take about being winded.

Maxie has been having some super good days and nights. They've started to give him tube feedings at night while he sleeps to see if we can gain some weight on him. So far he's still the same weight. Man if only we had that problem of TRYING to gain weight. But Max is also eating well orally.

The school therapy teachers are going to do an evaluation on him coming up soon. Every three years they have to reeval so this should be interesting being Max has changed so since the first of his accident.

So, the other day Jim and Spencer went out to see Max and Max was doing really well I guess but, when Jim talks to Max he seems to want to seize alot so of course he did. Just about the time Jim and Spencer were to leave Max stopped seizing and Jim asked him to kick his leg for him real quick before he leaves and sure enough Max picked his left leg up and gave a little kick. Jim also said that Max made lots of talking sounds to him.

This was on Wed. night So, thurs when I went to see Max (Believe it or not I got up early and got my butt out there early to catch him when he's awake). He was trying to fall asleep on me and I wouldn't let him and I sat him up on my lap and told him to hurry up and give me a big smile and sure enough he gave me a smile but it left as quick as it came and then I asked him again to do it and he was looking right at me and really seeming to be trying and gave me a half smile. He looked really good and very alert as if understanding every word I was saying. He also was making lots of sounds AND MOVING HIS LIPS WHILE DOING SO. Max has made those cheerio tight lips but, now he seems to be moving his lips up and down and closing them and opening them. And with the sounds he makes it's like he's putting two and two together, lips move and the voice comes with it to talk. So this was very exciting to see the two working together. Now if his tongue can move to form letters, then words...:o) Maybe he'll say something soon.

Ok, then on thurs night I went to karate and my teacher who is a Reiki master (do you remember me talking before about taking Max to the library for Reiki? Healing touch.) and I were talking about this cranial sacral therapy I'm thinking of doing for Max. I heard some good things about it that have helped some kids. I can't explain really what it is to you till I see first hand what they do on him.

Anyways, I told my teacher about Max giving me a smile that day and he had told me that on Wed night he was at a reiki meeting with the others and at the end of the meeting they gathered in a circle to send a healing prayers to someone and were asked to say who they were sending it to.

My teacher said he was sending it to Maxwell. The others asked if he was the little red headed boy who came to the library and he said yes. So, they all sent this healing prayer to Max on wed night.

This was interesting to me cuz then I told my teacher about Max seizing and then stopping suddenly and kicking his leg for his dad. Teacher asked what time this was and I wasn't sure but later in the eve. He said the prayers started at 8:45. I talked to Jim and he said it was about 9-9:15 that Max stopped his seizing and gave the leg kick.

Then Thurs. morning giving me the smiles and verbal noises with the lips moving.

I think this was pretty interesting and quit the coincedents? I don't know. They say the power of prayer and these are those guys who send prayers with the healing energy :o)

I don't do a whole lot of what they call alternative therapies with Max (such as Reiki and cranial sacral) so, if any changes do appear in Max, I would only assume it is cuz of what was just done. Know what I mean. Just in the case of those sending the healing prayer. We saw a few things that Max did that we haven't seen in awhile and he did them at this time of those prayers said and later.

I guess maybe this is GODS way of showing us not to give up on Max (not that we would just some reinforcment :o) That there is still room for progress with him.

I told one of the school teachers how much I appreciate all they do for Max and try new things and being so persistent in trying to get him to shine in anyway he can.

It's so comforting to know that there are others out there that believe in Max and not just go by what the Dr.'s say in that he will not progress anymore and we are seeing Max for what he will be from now on.

It's not that I'm looking for the old Max to come back (but that would be very,very wonderful and we'd gladly accept that) but, that he can continue to stay healthy, show us that he still is that little boy who continues to grow and learn all that he can. And that some day we will beable to tell each other how much we love each other through a hug maybe, a little kiss, Maybe even with spoken words :o) To feel Max's arms around me and give me a bear hug once again would keep me smiling for my life time :o)

It really is those small things that count isn't it (so, go give someone that big bear hug just because you can :o)

Thank you all again for your healing prayers for Max and your love and support that will be forever appreciated.

Lisa

Monday, January 26, 2004 8:21 AM CST

Gosh, I'm so sorry that it's been so long since I last updated. I didn't even realize. Doesn't seem like it's been 2 weeks already.

I hope everyone is safe in their travels with the snow that we are getting now. Spencers school is 2 hours late. Kinda surprised by this being it's still snowing some and they say we are to keep getting it.

Well, we got Max home this last weekend. Thinking this snow was going to come sooner and we'd either not get him home or have to bring him back sooner.

Couple cool things that have happened in the last 2 weeks and we had a super weekend with Max.

Lets see, I was going to tell ya that when Jim and Spencer went out to see Max a couple Mon's. ago, the nurse was holding Max in the rocker and had gotten up to let Jim hold him. Jim had to run to the bathroom quick first (LOL) so she just sat Max down on the recliner cuz she had to go get his water. When she sat Max down (oh and he was sleeping)he started to cry and did for like 30 secs Jim said. Now I know your thinking whats neat about that? Well, if you know Max before his accident he was a terrible one to wake up and would pout and yell no, and wiggle under his covers. This made us think of that, he was comfortable with the nurse holding him and rocking him and was mad that he was being disruppted.

This last weekend was a very, very good one. Max had been upset the last week at night and day. But, he must've gotten it out of his system cuz he was just fine for us. Even at night he was good. He usually gets upset when we have him home and postures quite heavily. I gave him a sleepy supplement that the Dr. ok'd (instead of using the chloralhydrate when he gets upset) It you can get it over the counter.

I Gave him this with his 8pm meds just knowing he'd get upset. Well, he fell alseep with little probs. His arms were still some but, nothing like we've had before. He woke a few times but, fell right back to sleep.

Oh, and when I was repositioning Max, he was sleeping but, he gave me the BIGGEST, none seizure, smile. It was like a kid pretending to be sleeping and trying not to laugh. It was sooo neat. He did it like 2x's. He must've been having a really nice dream. I had read on the internet that people that have taken this melantonin sleep aid have had very vivid dreams.

We have a new liquid projector for him that's kinda like a lava lamp but, shines on the wall. Just nice colors moving slowly in a circle, changing shapes. He just LOVES this new light.

Max got all his new switches from me and the school. We just started to work with him on this and will take time to see if he can catch on. I'm very excited about them and hope to have the patient to wait and see what happens :o)

Spencer read a book to Max (a kodak moment but, of course I ran out of Kodak film). Max's seizures weren't to bad. Not great but, not bother some to us (or him).

Last week I went to the school for a meeting with 3 MN legislators re: the parental fee that Parents pay if their child is on MA. If you remember they shot up ALOT this year to help pay off MN debt (I think that was the plan here? LOL I'm not politically understanding in lots of things) Anyways, our parental fee was 300 dollars a year and shot up to 1400 dollars a year.

But, there were all these parents there telling there story to the 3 men and I just sat back there crying. The point of all this was to let them know how the increase has affected their family.

This meeting really made me count my blessing and that I have so much to be thankful for. Listening to these parents talking about there children (now their kids had diff probs and are in my thoughts more harder to take care of for fear of them running outside, waking up in the middle of the night and roaming around, the uncontrollable out bursts of words, noise) And they had very much medical probs that seem way harsher then Max.

These parents are amazing. I never realized all they go through to care for their kids. It's hard to put my feelings down other then I just cried all through work thinking about them and Max.

But, the thankfulness I have is that I know Max is always safe, he's doing very well healthwise, his meds are very limited, he's being cared for by wonderful nurses and has a very nice place to live. Now it's not that I don't care to see him progress in anyway he can but, it just made me do alot of thinking.

I also wished I had talked, but I'm such a whoose and chicken. I could have said so much. All of these kids were born with health probs so my story is so much different and the decisions we choosed for Max compared to them.

The legislators were very understanding. One had a disabled child his self (she has CP and is older living in a group home) and one has a friend with a disabled child and the other said he was getting very educated with these meetings. They said they will try there hardest to get things changed. Our fee went up drastically but, these other parents got hit way harder then we did.

I should run though. Spencer is getting hungry and I think my time is up writting. Seems if I go past a certain time this won't go through and I'll have to start all over.

I'll get new pics up soon.

Take care, drive safe
Lisa

Sunday, January 11, 2004 11:15 AM CST

Good Morning to everyone,

Sorry I haven't gotten newer pics up. Still using up the film. I bought a disposable camera for out at Max's and I didn't realize how many pics it has on it. So, I brought it home to take pics here for Spencer family b-day party and still haven't used it all up yet. LOL

So, yes we did have another party for Spencer and had Max home for a few hours. He did really well for all the commotion that was going on. When I went to pick Max up from Sugar Lake he greeted me with a smile :o)

I had a meeting with Sugar Lake with his school therapist (who had reports from all the other therapists who couldn't make the meeting) and his social workers.

I really enjoyed hearing what the school therapists had to say about Max. I would say he got A's in most all of his therapies ( I think I should have a bumper sticker that says "My son is on the Therapists "A" honor roll" :o)except OT (occupational therapy) She had said that he is the same in this area. His wrists/fingers aren't any better re: being tight, but aren't any worse.

PT said that she feels he has gotten looser in his ankles and legs and shoulders and that the nurses are doing a really good job in keeping up on his range of motion in these areas.

Speech said that she has been working on Max's chewing and opening his mouth for better range and that she was able to get Max to open his mouth to chew on a candy coated rubber "T" toy that they use and he actually chewed on it like 8 times in a row. She was excited about this and of course me too. She will work on the tongue and see if she can also get him to move his tongue back and forth. My hopes and prayers are some day that Max can chew well enough and move his food around in his mouth to actuall eat solid food. How nice it would be to see him be able to eat a hambuger again that isn't all mushed up.

His vision therapist wrote out a VERY nice letter talking about Max. I wish I could show you the whole letter but, will just tell you parts that she wrote. I later cried (at work of course LOL) thinking how she wrote it so nice that she actually gave us back our little (Bigger) Max back.

She see's Max as a boy who does exsist inside and can show us that he does have a personality, can let us know what he likes and dislikes and that he does have feelings and choices in what he want's to do or not.

Of course we always knew this but, it's nice to hear it from someone who's not family or nurses.

Ok bear with me. Here's just a few notes she had wrote.

Max is a best served by interventions set within routines where the activity is presented, carried out, and ended in the same fashion every time. He then has some power of anticipation and control over what will happen. It is easier for him to participate when there are no unnecessary suprises from the environment.

I like how she said that he has the power and control over what will happen.

She also mentions that he will tune out when over stimulated and explained some examples of what he'll do to do this to presever his own self.

Kinda sounds like a typical little boy who doesn't what to finish his school work and starts to daydream LOL.

She had also mentioned Max's horse riding. Saying that it was a wonderful experience to watch him and that he responds very positively to the movement of the horse and is able to stay with the activity for a relatively long period of time. He is happy and content on the horse. His sensory system is aroused and he is alert.

She has also talked about the finger switch that they just got and will work with him on that to move toys and to turn things on and off. This is something we can't wait to see if he can do. From what I hear this finger switch is very sensitive and can pick up on the slightest movement so it wouldn't take Max much to set it off if he can only move his fingers just the smallest movement that we may not even see.

Sorry this is so long but, it was a very good day out there hearing all this and just had to share it with you all.

One doesn't realize just how important these little things are that we take for granted every day in our lives. I mean who thinks about every chew we make and how lucky we are to beable to do this or really feel the movement of the horse when horse riding (ok, not many cuz not many ride horses but..) you know what I mean. Max is probably experiencing things in such a different light then us and probably really enjoys some of the most wonderful things in life that we just forget about or don't even think about.

Well, that's my insitefull thoughts for the week :o) Just one more thing that makes me think more deeper then I would have otherwise.

Have to go to work now. Take care and thank you all so much for being there for us to this day. It's been a few years now since Max's accident and still Max changes from day to day and still gives us surprises in small but yet big accomplishments.

Lisa

Tuesday, January 6, 2004 8:10 AM CST

Good "Very Cold" morning,

I decided to take Spencer to school this morning being it's sooo cold. I just can't make him stand out there waiting for the the bus.

Went out to see Max yesterday and bring one of his Christmas gifts, a hug bean bag chair, that really is full of foam rubber pieces. I put him in it and he looked pretty comfortable. Told the nurse to watch so he doesn't stretch over in it or seize while in it. But he was able to watch TV while in it. I took some pics but, have to use the rest of the film up first.

Then I thought about his seizures while I was there (about an hour and half) and he didn't seize the whole time I was there. I think he may have had like two of those look to the left seizure but to me those are just him looking to the left :o)

At his Dr.'s appt, they did turn up his VNS just alittle, so maybe this is really starting to show it's colors in how it can work for Max.

Spencer's Birthday was on Sunday. 9 years old now. You really notice how fast the years go by when you have kids.

Spencer had some friends over on Sat. for his birthday. They seemed to have fun just being wild.

Well, stay warm til Saturday. Heard on Saturday it's to be 30 degrees so that will feel like a heat wave.

Hopefully if Max seizures have gotten better we can see Max maybe do alittle more in some way, any thing, I'm not picky LOL :o)

Keep your fingers crossed and some prayers said Thanking God for Keeping Max healthy and strong and keeping those seizures at bay.

God Bless
Lisa

Saturday, December 27, 2003 10:37 AM CST

Hello, Hello, Hello,

Well another Christmas has come and gone. We had a nice time with Max home.

I got him home and did some things with him. His seizures were really well until I started doing range of motion on him and then he started to have some seizures.

I tried to get him on the big ball on his tummy but he is sooo tall now that it was really hard and he kept stretching. His arms would go up and out and his legs would come up...LOL It's funny to see him stretch. He moves so much all over the place.

We watched Finding Nemo later in the eve and Max seemed to like that until about half way through he started to get upset and posture some. I tried rocking him and that didn't seem to help so I just put him to bed and he calmed down. I rearranged the boys bed room so the lights he likes so much don't just shine on the ceiling, they also shine on the wall which I think surprised him.

Max was also running a low grade temp for a couple days and on Christmas day it got up to 101.0 so, we decided that he should just go back to Sugar Lake and not go to Aunt Lauries for Christmas.

We went out on Friday to see him again and he was doing much better temp wise but, was still on the crabby side. He seized alot when we were there and his arms were stiff.

He just looked crabby all day on Christmas and Friday. I tried to get pics of the boys by our Christmas tree and you'll the look on Max's face. Just not a happy camper. We tried and had to laugh cuz he just wasn't going to smile or at least get rid of that crabby look.

Grandpa Ralph came home yesterday from the hosp. He's has a hard time walking being he was laying in bed for so long when in the hosp. They also found out he's diabetic so, he has to watch what he eats now. From talking with Joanne about it, it sounds so complicating trying to figure out what you can have to eat.

But he's glad to be home and I'm sure his strength will come back. It'll just take some time.

Other then that not a whole lot more to say. Once Spencer gets back in school I'm going to go out to Max's more or have him come home for the day to play with the new toys I got him to see if he can respond to them. One thing I ordered for him hasn't come yet so hoping that'll get here soon. It's a finger switch that makes toys move. He seems to move his fingers when you ask.

Ok, well, enjoy the nice weather cuz I hear it's going to get pretty cold next week.

Lisa

Monday, December 22, 2003 10:38 AM CST

HAPPY HOLIDAYS!

Well, Christmas week has finally arrived. Just 2 days left to wrap up loose ends.

We had a eventful weekend sort of. Some of it just piddly stuff I won't bore you with.

Thursday our friend had mentioned it was her B-day and was having a party on Sunday- HAPPY B-LATED BIRTHDAY TO BECKY. Sorry we didn't make it out Sunday.

But, she reminded me it was Jim's on Friday LOL. The month flies so fast. So, when Spencer got home, we ran up to Target to get a gift.

HAPPY BIRTHDAY JIM!!! WE LOVE YOU VERY MUCH!

Sat. we watched the Vikes win, which was fun. Had a friend stop over to watch with us. I was suppose to be cleaning one of my jobs (at this time) that I totally forgot cuz I don't usually clean it on the weekend but, with them taking Christmas day off (it's a dialysis building) they were opened on the weekend. I realized this on Sunday that I had forgotten. I have some big apologizing to do.

We also got a phone call, saturday, from Joanne saying Ralph was in the hosp. He was having lots of shortness of breath. They found he had blood clots in his lung and leg. He is doing better at this time but, will remain in the hosp for another 5-7 days.

If I could ask all of you to say a prayer for Ralph, his family, Joanne, that'd be great. It's so hard to have someone you love in the hosp and then over the holidays on top of it all.

Sunday, Max had his Christmas party out at Sugar Lake. It was a VERY Nice Time. The food was good, the company (the kids families, the staff) was very enjoyable to talk with. And Max's gift to us was this BEAUTIFUL CALANDER that they made with Max's pic on almost each month. Friend of mine said that Max had a photo shoot. They have a pic on the front of the calander with his Vikes shirt on, Feb has him in a maroon shirt with valentines things around him on a table, April, he has a nice shirt on with Easter things around him, Aug, he has on sunglasses, shorts, lifejacket, fishing rod in hand, Oct. his halloween mask, shirt and pumpkins, I think you get the idea now :o)

They also highlighted with glitter pens special holidays, birthdays, and then some heartfelt poems to go with mothers day, fathers day, grandparents, etc.

Ok, I have to admitt I had tears. The pics are great of Max and the poems so sweet.

Max has been still having good days. He has had some posturing episodes the last couple days. He didn't feel like eating Sundays when we were there so, he got tube fed. But, knowing he had such a long stretch of good days, those not so good days are not so bad to hear about. He can have his crabby days too just like the rest of us. You know, getting ready for the party and working on his calander gift must've just done him in :o) They just keep that boy busy out there LOL.

His Dr.s Appt went well. She turned up his VNS alittle and is checking his blood levels to see if he can have more of this one seizure med.

Max comes home Christmas Eve for the night and then Christmas day we are going out to Aunt Lauries and Uncle Johns.

I have new pics to put up from the party and will have to work on getting them up later tonight. I have to run and get a few things (AGAIN) At walmart.

I'll update again after Christmas so, I will wish you all a Blessed Christmas now and thank you again for all your love and support.

Lisa, Jim, Spencer, Maxwell

Friday, December 12, 2003 9:23 AM CST

Ahhhh Friday again,

Man do the days fly by around here. Seems I was just complaining that Monday was here and the weekend was over LOL.

Spencer has been home 2 days with a nasty chest cold and a low grade temp. So, the germs have started swarming the house this holiday season.

If you noticed I put an older pic of Max up and one of the newer ones to show you how "BIGGER Max" has gotten "BIGGER". He's really grown tall and more boyish looking and not so much a toddeler. In fact the newest pic on the bottom I noticed that Max may have my nose and not the Gosewisch nose LOL.

I'm hoping to get some good family pics on the 21st at Sugar Lakes Christmas party that they are having for the chlidrens parents/siblings and the grandparents.

We all went out to see Max last Saturday and we left feeling really, really good.

He was soooo awake and alert. He was in the recliner and when I walked over to say "HI" he looked over at me right away. Of course the head didn't move with him but, the eyes came over to greet me :o)

He responed well with our tickling his feet by lifting his legs up. He's been having bowel movements on his own with no help from meds.

He's been having good nights with no posturing and falling asleep on his own with no help from meds.

I was having Max sit up on my lap when his nurse came over to say "hi" to him and boy did Max look up to her and she talked with him and then his lips formed the little "O" that he does and they moved back and forth as if he really wanted to talk back to her.

I also went to see Max last wednesday and he was doing really well this day too. I swear he kicked his leg for me when I asked him to. He did it twice in a row. I had him look down at his legs and asked him to kick one and sure enough one kicked out alittle.

Then once again he was watching his nurse helping with the other child. I had to laugh cuz he was really looking at what she was doing. I told her this and she said "Yeah, that Max is always keeping an eye on me". I mean he would look at her and then look at what she was doing and then back at her.

His siezures have been actually doing well too when we've been out to see him. He's hardly had any in the time we've spent with him.

So, we all have been feeling very up these days and having high spirits. And you don't know how many times I THANK GOD for Max's doing sooo well these last few weeks. Everytime I call and ask how he's been doing and they say great, quick little prayer right then and there thanking him, thanking him, thanking him.

Now we just having to remember that he CAN have these good weeks and if he goes to having some bad days or week that we must keep in mind that it's hopefully only temporary and that he's just feeling grumpy and needs to vent (after ruling out any physical probs that is)

We have a Dr's appt next week with his neuro so, we'll she what she has to say. It's been almost a year since his VNS was put in (that vagel nerve stimulator for his siezures) We think it is helping but, unless we turn it off for awhile, who knows.

Well, I should go and see how Spencer is doing. He must really not be feeling well when he lays on the couch allll day and doesn't move or eat anything.

God bless,
Lisa

Thursday, December 4, 2003 7:22 AM CST

Good Morning,

Hope everyone had a nice Thanksgiving. We did. Went to my Aunts house. Saw a couple of my cousins that I haven't seen in a long time. We talked about Max and the last time we all got together and I didn't realize that we all had a picnic about a month before his accident. So, my cousin said how much of a shock it was to hear of his accident after just getting together so soon before. Made me glad that we did get together with them.

Well, we had Max home for the day last Sat. Quite an eventful day that day. The grandparents came out to visit and Uncle Scott came too. Some other family members came out too but I had to get Max back for his meds and supper before they got here.

Max slept most of the time and if he wasn't sleeping he was siezing. He's not used to some commotion I guess especially when your cat decides to hang out on the geko aquiarium with the heat lamp right there and sizzle his hair off. Man did that smell. Took us awhile to figure out what was burning, thinking all my Chirstmas lights might have something to do with it. We checked both cats knowing they like to lay under the lamp and watch the crickets we feed the lizards and sure enough Moo had a bunch of hair come off of him. He's ok though and didn't seem to faze him at all. Must've just got quite warm and decided to leave from where he was laying.

Like I said before, it's pretty quite at his lake home so when he get to our house.....whoa....But, I'm sure he knew who was around and enjoyed hearing our conversation and laughter.

He seemed to like the christmas tree. Even though it wasn't dark enough to see the lights.

Went out to see him yesterday and he has a cold but, he sounded good to me. He has been coughing the gunk up well and not getting upset with this cold. Guess he was upset once the afternoon before but, when you have a cold, who doesn't just want to be left alone. And his eating orally hasn't been to great but, again food doesn't taste well when you have a cold.

The PT lady from school came out to see him yesterday and Max has good range still with his arms and legs. She said that he's doing really well out there and that the nurses are keeping up well with keeping him flexable.

Max slept the while I was there up til the time I was ready to leave. Stinker. Seems to do that alot. It's hard to find the right time to go out there between his eating and water and me being home for Spencer. Not much time to choose from.

Max will be coming home over Christmas so we can have Christmas morning with him.

Well, time to get Spencer off to school.

I'll try and get some new or old pics going again. I was going to get some before and after to show you how Max has grown so.

Take care,
Lisa

Wednesday, November 26, 2003 7:09 AM CST

Good Morning,

We never were able to get Max home on Sunday cuz of the snow storm and here I decorated the house early for Chirstmas so Max could look at all the lights. So we were thinking of bring him home for the day on Saturday (not for a sleep over though).

I went to visit Max yesterday and he was really sleepy. The nurse thought he maybe coming down wtih a cold. He sounded gunky in his chest. I told him to cough (on his own) a he seemed to try. He sure was looking at me for awhile while I was talking to him telling him to make a big cough. He can cough on his own but, I think it's more of a reflex cough then him purposfully coughing.

Max has been sleeping well at night again without any or much posturing (knock on wood). I'm sooo happy to hear this when I call.

His new ankle/foot braces are working out good without problems which is nice. Means no running down to the clinic to have them fixed.

So, all in all thing are staying stable with him. I just heard on the news that some children had died from the flu. Lets pray that this isn't going to be something we see more of this winter.

That's about it for now. I have to get Spencer going for school. He's excited cuz it's play day today being the last day of school for the rest of the week. Must be nice Jim and Spencer get Thurs and Friday off but I still have to work both days ("no rest for the wicked" and I always thought I was a pretty nice person LOL)

Hope everyone has a nice Thanksgiving. I have to say that we do have alot to be thankful for and I could make a list but, it would be quite long :o) but, I think from my journals that you know what some of those blessings are and Sugar Lake being one of them and taking such good care of Max :o)

God Bless,
Lisa, Jim, Spencer and Maxwell

Wednesday, November 19, 2003 9:28 AM CST

Good Morning,

Thought I'd do a quite update.

Max is coming home this Sunday for a sleepover so I can update next week on how that goes.

The last few nights Max has been sleeping well with no posturing (I hate to say that out loud cuz you know murphey's law :o(

I've decided to start earlier with the house decorating for Christmas being Max is coming home this weekend. I usually wait til the day after Thanksgiving but, thought it would be nice for him to see when he's here this weekend.

We went a saw Max last Sunday and Grandma Joanne and Grandpa Ralph showed up also. We watched some old video's of Max and that was nice. Brought back lots of good memories but, as always makes us sad as we think about them later and we come home to house with no Max running around.

When we were out there Max took a nap on dads lap and then woke up and had quite a few seizures and then he started to get stiff. So, the nurse took his torso brace off and he then he was much better. Must've been bugging him while he was being passed around for dad to mom to grandma LOL.

When grandma was holding Max he gave her a really nice pleasant look. We think he was sooooo close to giving us a big smile or laugh.

Tomorrow we go and get Max's new ankle/foot braces. This is going to take like 2 hours they said (UGH!!) and I have to pick Max up at 8:30 in the morning to get him there at 10. One of those long days I feel.

Spencer got his report card the other day. He's doing pretty good. A couple things he needs to work on, spelling and getting his work done on time. But, man these words they have them spell are hard and it's more of just memorizing them and not being able to sound them out.

Well, I'm should get going. I have to run to walmart and get some Christmas lights for our new deck. I just love the lights at Christmas time. I should get all Blue. Jim likes the houses that are lit up with blue lights.

Take care and if I can ask once again to keep Max in your prayers for his comfort from those blasted seizures and his posturing when he gets upset. Oh, hey! I had some nice dreams about Max (must've came from the video's) Max, in my dream, pointed to the TV and asked where the game boy was cuz he wanted to play it. I asked if he remembered how to play it and he said yes. Funny cuz we never had one before his accident so, he doesn't even know what one is.

These dreams I have of Max from time to time are way better then the video's cuz they are so real like and I get to talk with him.

Thanks agian and God Bless,
Lisa

Wednesday, November 12, 2003 3:34 PM CST

Hi,

Was hoping that I would have something more to write but, I really don't have much.

We had Max's pump turned down in the eve and he's been having more rough nights then good so, I may have to have it turned up again. Not sure why the change in him. He has had his pump at this dose for so long til a few months ago and then????????????????? He was sick there for alittle while, throwing up and the other end running loose.

We went and saw him Saturday. Seemed to seize alot. Jim almost got a smile out of him tickling him under the chin. He would wiggle his feet for us when we asked.

Today when I saw him, he seized alot again and was getting stiff in his arms and legs. But, then all that seemed to settle down.

Oh, Max lost another tooth. One of his eye teeth. They found it in his room on the bed (or the floor by his bed). So, he know's enough to spit them out.

Max has a new house Mate. A boy. But, as I've said before, for privacy reason's I can't talk about him. Not that I know anything about him anyways other then his name and he's a boy LOL.

So, between his seizures and his getting upset at night, the prayers are flying around here asking for relief from them. It'll be a year coming up here when his VNS was put in and they say (or we've heard) that it can take beyond a year to see results. I'm sure it's helping some but, just not enough for us.

Well, that's about it for now I guess.

Thank again for checking in on Max and keeping him in your prayers,
Lisa, Jim, Spencer and Maxwell

Sunday, November 2, 2003 4:13 PM CST

Good Afternoon,

I thought I would update even though I don't have alot to say at this time. Though that saying "no news is good news" sounds good to me.

I got the new pics up for you to look at and I have more but, will leave these up for awhile.

Max got to horse ride last Tuesday and Suzie noticed Max using his muscles differently this time. She holds on to his waist while hold his head. She said that it felt as if Max was trying to push away from her to his right. He wasn't seizing and he wasn't pushing backwards like he likes to do at times to stretch cuz his legs weren't pushing out straight. She said it was definatly a different kind of muscle usage that Max was doing. I joked and laughed saying Max was probably trying to pull away from her wanting her to let go so he could ride by himself with no help. Problem is he needs to hold his head up better. LOL

Brought Max in to have his pump refilled Friday and I had them turn the eve dose down again to where it was before (we had turned it up cuz he was so upset those 2 months) So, we are hoping that it was his molars that were upsetting him.

He did posture on Friday night and needed choloral to help him sleep but, then we found out that they had forgotten to give him a supp that afternoon so, he probably was bothered with that.

I don't blame anyone for forgetting the supp. Usually the day nurse gives it but, being we had gotten home so late that day the afternoon nurse had to and I suppose when your not used to giving something you forget. Not something you want to make a habit of and need to double check the notes as to what needs to be done for Max (or any of the kids that come along) but, I suppose a lesson learned and I don't think it'll happen again :o) Just bad timing cuz I was thinking it may have been the pump being turned down.

I guess he did find Saturday night and I've been praying all day for tonight to be good too (every night for that fact LOL). They say 24 hours is when you'd see a change.

Other then that. Max is still cute as a button and I just can't kiss him enough.

His seizures come and go as usual. Some day's worse then others.

He still coos at you when you talk to him, especially when he's laying on his back.

We also had him fitted for new ankle/foot braces. He's finally out grown his after years. They'll be ready in the middle of Nov. so this may take some time to get them to fit right making sure he has no red pressure marks on his legs/feet. Hopefully not cuz it's along drive just to have them fixed if just a small prob.

Think we'll get anymore warm weather one more time? Could use it to finish up the leaves.

Stay warm,
Lisa

Sunday, October 26, 2003 5:25 PM CST

Good evening,

Boy what a differents an hour makes with the sun not shining later in the eve. It's already getting dark (or is dark).

We just got back from bring Max back to his lake home after having him spend the weekend with us.

The weather was to icky to do anything outside with him so we played inside. I have some cute pics (I hope they turned out) of him here at home with us. I didn't have time to have them developed today so tomorrow I will.

We went Sat. to pick Max up and when we got to Sugar Lake Spencer had a small magnet in his hand swing his arm back and forth and the magnet swung out of his hand and hit the door window (the side where Max rides) and the window just shattered. So, we had to deal with that and tape it up with plastic. Jim said "I hope this isn't a sign of what our weekend is going to be like".

Well, our weekend turned out pretty well (except for the Vikes loosing LOL)

Max had a good weekend. OF course he got upset at night as usual and I had to give him his sleepy med. But, all in all he was wide awake the whole time here. He sleeps alot out at Sugar Lakes. His seizures weren't too bad. They come and go to where he has alot or not hardly at all.

Max moved his fingers when I asked him to. Couldn't get the feet going thought this time like he has in the past. But, when I asked him to move his feet he moved his fingers LOL. Guess he wants to make his own choices.

Jim was talking about Max stretching so much and worried that he may stretch himself off the bed. I of course said "naw" he doesn't stretch to the point of rolling that much. Well, I just happened to get up at around 7am this morning to find Max's feet and legs hanging off the bed. So, I guess we'll have to watch that. At least at Sugar Lake the nurses don't go to bed at night and check on him more then we do at home cuz we do sleep.

The kitty must've been bugging Max maybe cuz she sleeps on his bed at night and when we bring Max home she must think "hey, what's up with this?" But, she snuggles up next to him and sleeps.

I guess their getting a couple more kids at Sugar Lake so, this will be nice for Max to have some roommates. We'll see how he deals with it. He may get jealous too being the nurses have more then just him to care for LOL. Or he may think "Finally, I can get some rest now at times."

I'm really tired so this update my be scatter brained. I'm also in that "Missing Max" mode after having him home and taking him back. Seems so quite and unbusy for me. Max sure doesn't keep me going.

But, he was so alert and very aware of things I would show him or have him listen too.

Well, I'm going to go veg out on the couch. Sundays are best for that no doubt.

I'll get those pics going tomorrow. I just can't wait for you to see them. Max looks so good sitting with Jim on the Floor while Jim and Spencer played checkers. I think Max was really looking at them playing. Spencer and Max played on the computer too for awhile. He really seems to like that also.

We just don't feel like a family as a whole when Max isn't here. But, when he is I smile quite a bit more.

Oh that's right, the couch is calling me. I better go and spend some time with it. I could go on and on about missing Max(past and present) and then just sit and be a blubbering mess.

Take care and stay warm
Lisa

PS HAPPY BIRTHDAY MOM/GRANDMA CONGO........WE LOVE YOU SOOOO VERY MUCH!!!!!

Friday, October 17, 2003 8:56 AM CDT

Good Morning,

I heard it's going to be in the 70's this weekend. Guess there's not going to be a good reason not to get the leaves raked then tomorrow.


Not to much to say this time around on the update. I guess no news is good news. LOL

Max has been doing horse riding every Tues. The weather has been nice enough to keep up with it. Some days are better then others.

Everytime I go to see Max at Sugar Lake he's sleeping. But, he's been doing really good as far as being loose when he's sleeping and mornings. He gets alittle more tighter in his arms and legs towards the afternoon. I think it's just him not wanting to be played with anymore and his way of saying "Hey, leave me alone already OK!"

I was tickling his palms of his hands when he was sleeping and he'd pull away from it. I was doing some leg stretches on him and you could feel his muscles trying to work against me (Max trying to pull his legs the opposite of what I was doing). So, Now all we have to know is if he's purposfully doing this or if it's just a reflex. If he would only add in a verbal word like "NO" or something :o)

Other then that not much to say. He's gained some weight back since I told them to go ahead and feed him red meat agian. I was trying to see if his tummy would feel better eleminating red meat being it's hard to digest but, didn't seem to make a diff and he's has been sleeping well with no or very little posturing.

He's also being staying pretty regular on his bowel movements without giving supps every other day.

Now I have to get him in for his flu shot cuz he's been staying real healthy (knock on wood).

Did everyone see the Star and Trib article on Pastor Joel. Sounds like he's making a termendous recovery from his accident. We're so happy to hear this. What an amazing Man. Are prayers are still with him and his family for continued healing and strength.

I suppose I should get my day started. Spencer has off from school yesterday and today. He's still sleeping so this time is good for me to get some things done before he starts asking me what we're going to do today (Rake leaves for Dad? LOL).

Take care and enjoy this coming beautiful weekend we're suppose to have if it really happens.

Lisa

Sunday, October 5, 2003 3:28 PM CDT

Gosh, Sorry it's been awhile since my last update. I didn't realize it. Time flies.

I was going to udate during the Vikes game but, it was such a good game that I just couldn't take my eye's off of it for a minute.

Ok, well, Max has been having really good days (biting my tongue LOL).

Horseriding last week was fun. He was sleepy from having early morning PT (schools PT) and she (PT lady) hasn't seen him since last year and was very impressed with his flexability and holding his head up well while leaning on his elbow on his tummy. She only had just minor things that we needed to correct and work on.

Anyways, horseriding.....we put Max on Toby backwards like we do and lately Max hasn't liked that and this time he sure woke up to it. BUT, he gave us some smiles that you wouldn't believe. I thought they would turn into seizures but they didn't. They were DEFINITLY smiles from the heart. And he did this quite a few times. Going from scowel face to smiles. Worked hard to hold his head up best he could.

The Vision teacher from the school came out and she was happy with his response to her plays that she does with him. She noticed Max moving his fingers more to her commands also like we have noticed.

Friday I had an emotional break down over Max. Well, I was going through Max's paper work of old bills, and what not that I get umpteen million of now from Ins, and MA re: what's been paid and all. Anyways, I ran across Newspaper articles and read them, some old pics of Max before his accident, old toys, paints and things that I think have been laying around since before Max's accident and that he probably played with (I was also, cleaning out the basement and the kids did alot of their messy playing down there with paints and playdough).

Well, I had to stop cleaning cuz I also started thinking about what Max would be like today at this age and Max and Spencer going to school together, riding the bus together, would they sit with each other on the bus or with their friends (Spencer said Max would probably sit behind him and hit him on the head), what kind of school clothes/shoes would Max pick out to wear, would he be good in school or a trouble maker (which seemed to me the way he was going LOL), what sports would he be wanting to do, or would Spencer have converted him to a video game junky. Stuff like that.

They I HAD to go and look at old, old guestbook entries.

I ran across one that Aunt Laurie had written saying she had made this poem up for some reason in 1982. I just cried cuz this poem made so much more sense today then back then

We gave up something we had for something new.
Something we are heading for now.
Where are we heading now?
Do we really Know?
Can we change if we want to?
Will things work out?
YES, I say because we have each other.

I realized that I (we) could have never gotten through all that we have and as far as we have without the "WE" such as in this poem. Thanks to Family, friends, and all of you out there with your guestbook entries of encouragement. "I" especially couldn't have made it through this without Jim and Spencer by my side and of course Maxwell has tought us all so much, Love, patients, strength, and so much more. We thought we had so much before but, now realize we have way more then we ever thought AND what really matters when it comes to what it is that we have (am I making any sense? As I read this back....whoa....I can barly make sense of it).

My mind has been racing with so much thought that it's hard to get it down in writing.

There's also the Faith/prayers, that Like Aunt Bev said once, that may have gotten lost in time but, has now came back and much stronger.

I know I have so much to be grateful for but, at times I still get so blasted mad at all this and they way it all turned out. One day at a time still I guess.

Oh, I got a email from Caringbridge and they will be shut down on Oct. 11th. from 3-6 pm. So, don't think you lost them or anything. Guess they are working on more things to upgrade the sites.

Well, thanks again for listening to me babble on. I loved some of the latest guestbook entries. They made us (me) feel REALLY GOOD. Ya know as I read back some of the entries, some people come to Max's site and would read the guestbook to get strength and encouragement for themselves. I think that is so neat.

GOD Bless all of you,
Lisa

Monday, September 22, 2003 2:47 PM CDT

Hello,

How about those Vikings huh? So far ya gotta like em'.

I've been wanting to update but thought I would wait til after Saturday's Open House at Freedom Farm.

It turned out to be a nice day (really windy though, Max's cowboy hat kept blowing off) for the Open House and it was a good time. Grandma Congo and Grandpa Ralph came out and so did Aunt Laurie and Friend Patty Barth. Max didn't ride but they had a demonstration with 2 other kids. I do have a pic of Max on another horse that was there for pony rides but, he was a little jumpy so, the pics didn't turn out that great cuz I was nervous to have Max on him. Just goes to show you that Freedom Farms horses are trained well for special needs kids/adults. This horse knew something wasn't right about all that was going on behind (on) his back.

I would like to say special thanks to F & E Degarmo from TN for sending me money to donate to Freedoms Farms for helping to care for the horses.

Also a special thanks once again for Clear Springs Elementary school for helping out with donations. They've always been there to help us with Max in anyway they can and have been very supportive to us since Max had his accident.

And Thanks to Grandma for donating some money for Max's riding lessons. We Love you so much and congrats on your retirement as of today at 2pm (?)

Max has been having some great riding lessons doing well with holding his head up as best he can. And having some muscle strength to hold himself up some without so much help from us.

I also found some juice that Max seems to really like. I just ran across it at Cub. It's calle Naked (LOL) But, is supposivly very health for you. Has all the good stuff that you might not eat enough of. He's been drinking like 2-3 0z. at a time. Just slurps it down. And he's been going to the bathroom room on his own without the help of a supposatory. This may change once his body gets use to the juice I bet though. Seems to always go that way.

Oh and remember I told you that Max has been having such rough nights and some days with posturing and getting really upset. Well, I had forgotten that I was told that the light bulb on his ceiling light that shows colorful designs was burnt out and that was like 2 months or so ago. So, I gave them the one I have here at home and that last nights Max has been just fine and showed no posturing or upsetness.

You don't think that maybe he was made cuz he didn't have his light to look at at night do you? I brought it out Friday and he's had three good nights now in a row (if I just haven't jinks Max now).

That would be something interesting if true. That Max knows enough to get mad cuz he recongnizes that something is missing out of his routine that he likes.

I have to talk with the nurses more about his seizures. He's on his old one now but, wondering if the new one should be taken away. They seem to be better and less again and now even when he wakes up he doesn't have them like he used to. He'd have quite a few clusters upon awaking.

Max comes home Wed. for a sleep over and the next day he has a dentist appt. I'll still have his teeth checked anyways to see if all is ok with them.

I have pics but, don't think I'll get them up today. Need to get some things done before Spencer gets home.

Thanks for all the prayers and thoughts. I can't say enough how much the support from all of you has helped us get by these last couple years. Coming up to the three years this coming Monday. Time sure is flying by and it still seems just like yesterday when all this happened.

And our faith in GOD, knowing that he's been there helping us to stay strong and take each day at a time. I know I don't thank and praise GOD enough on Max's site like maybe I should. But, we do here at home and in our hearts.

We're very proud of Max and all that he has gone through and has handled it all with such great strength. He's always said he was bigger and stronger and he sure has proven that to us.

GOD BLESS,
Lisa, Jim, Spencer, Max

Friday, September 12, 2003 7:23 AM CDT

Good Morning to everyone,

Man I'm not used to getting up this early already so soooon. Summer went by so fast once again.

Max had his Dr.'s appt last Friday. I thought it was to be yesterday. So, last friday was a long day for us. I talked with his Dr. about his being so upset the last month or so and she agreed that we should see if he is having trouble physically before we blame it on neurologically.

We did a whole body xray on Max and I haven't heard from them so I guess that means he's not broken anywhere. I made a dentist appt (and they may not put him to sleep to check his teeth unless I say we need to know if he has a tooth prob that is hurting him). Guess when it's your baby teeth it's not a big deal to get them cleaned well and a get a good look at them.

I made an appt with a GI Dr. but, that's not til the end of Oct. and I need to call and ask the Dr.s nurse what they would do cuz if we remember right check his acid level in his stomach took quite a few hours. I'd hate to drive all the way to Minneapolis and have them not really do anything. And I don't know how they check for ulcers or anything else and the time it takes for that.

But, on the other hand. Max had a GREAT horse riding session on Tues. He stayed awake and was alert. We got him on his tummy to ride (Max's feet at Toby's head with Max's head laying on the back of Toby's rear, Nice huh?) We laid a blanket down so Max wouldn't get horse hair all over his face. He was really stiff this way but, after riding around a bit he loosened up quite alot.

I took Max to Walmart yesterday for new shoes (he didn't wear out the bottoms of his old ones, just the velcro at the top LOL) and He hasn't changed in size but, then we did by them bigger to fit with his braces on.

I wanted to get him so neat looking ones with lights and/or ties but, they just don't fit well with the braces so back to Spiderman with velcro. He seemed to like them when I asked if he wanted Spiderman. He looked right at them.

Then we went to the Toy section and boy did Max's eye's light up. We ran into his last years special ed teacher and he looked at her and then I noticed his right arm come up and he was moving it in a way I've never seen before. As almost as if really trying to make it move himself. It was up and just moving it back and forth.

Well, then we got him a couple toys and came home to pick Spencer up from school and head back to the lake home. I had asked Max to lift his arm up amd move it like he did at Walmart and sure enough he picked it up some and moved it. Spencer saw this too. I had asked him to do this a few times more and he did. Then I left him alone and he was just sitting there with his hands in his lap looking at this sun catcher I bought to hang in the van for him to look at. I asked him to move his hands again and this time he didn't pick it up but his fingers moved.

So this really brightened up MY DAY. I was so excited to get home and tell Jim or Grandma or ANYONE.

The nurses said he's been having good days and nights with no posturing also the last few nights. Oh how I pray that this keeps up.

We were thinking that ya know the last time he had such an upset time for so long and then he seemed to calm down and he was more awake and alert and came out of this so called coma that they talk about that maybe he just made another step to coming out more. Does that make sense? Ya know there's this scale of coma stages, Rancho something. And it list stages of coma's. I don't know. We can't loose sit that "yes" he does have a brain injury.

I guess Jim and I aren't ones to constantly be looking for things anymore like we used to (changes and progress) and then misjudge what we see so I feel when we do see things in Max that they are for what we see.

Well, that's my report for this week. It feels good to write about something positive again and oh how we thank GOD for these things once again. I mean really THANK GOD. The constant praying I do through out the day these last 2 years are sure making up for the times I didn't through out my life LOL. And not just for and about Max. I guess after Max's accident, I've noticed more things/people, who need prayers. I've noticed more that I needed to pray thanking him for the good things that we have and to be more gratful for what we have and not crab all the time :o).

I also thank him for such a strong support group we have in all of you and the prayers and love that you send our way.

This journal I write for all of you has helped me in so many ways. Keeps me sane in some ways, to let it all out and not keep it locked up inside me.

Well, I have to get Spencer off to school. He has a cold ALREADY. Not even in school for 2 weeks and sick. It's going to be along winter I think LOL

Take care and stay healthy :o)
Lisa

Thursday, September 4, 2003 7:31 AM CDT

Good morning,

Can't believe it's been 11 days already since my last update.

I really don't have much to say this time round. Max has been having some rough evenings (more then usual) and they've been having to give him his sleepy med to get him to calm down and go to sleep.

He's been stiff in his arms and legs on some days but, not as bad as the night times.

His seizures seemed to be worse with the new seizure med so, we are going back to the old one that we had taken him off of and take him off the new med that he's been on.


We had hoped that things would have settled down some for Max and that he could relax again easier but, something must be going on in his head that is just not letting him.

Spencer started 3rd grade and seems to like (for now LOL). Hard to get up in the morning but..........

Spencer missed the bus for home the first day of school. He has to shuttle from on bus to another being he's not going to his home school (that's a whole nother story as to why) so, trying to find him that day was a mess. He ended up walking home with a friend (who lives close to the school) and this friends mom brought him home.

So, til Max gets on the old med, I guess we'll see what happens then and see if he gets back to his ol self. He has an appt with his baclofen Dr. next week and I have a feeling he's going to be really stiff for her from all his posturing. I'll have to get out there more next week and try to work out all his kinks with some extra range if he'll let me.

PS. I forgot to say that Max's horse riding place (Freedom Farms) is having a fundraiser/open house to help raise money for the cost of taking care of the horses they use for the kids, So, if your interested in sponsoring "TOBY" Max's horse, so we can keep Toby healthy and happy so Max can keep riding, you can send your donations to my house (by September 13th please)

Lisa Gosewisch
1104 3rd AVE NE
Buffalo, MN 55313

Thanks so much.
Take care,
Lisa

Monday, August 25, 2003 9:37 PM CDT

Good evening,

Thought I would take the time to update now. I had a nap before work and feeling pretty awake now. LOL

After writting my last journal update, I had talked to the nurse at Sugar Lake and she said Max had a good OT session. That he turned his head and looked at her object that she was showing him 4 times. Of course I wished I had been there to see him.

On Friday I had taken him to the Reiki lady, Karen is her name, for that biofeed back thing. Spencer just got a huge kick out of her and what she does and the things that she has (crystals, cool computer background LOL, 3 cats, stuff like that).

I thought it was very interesting also and wished that Jim or someone else was there to experience it. She had put a band around Max's head and one each on his wrists. She says she can get info from his pulses through her computer and that all this is like the radio waves that we get for our TV's, radio's and cell's. But, this in natural energy that we receive and it helps us to heal. Ok, you may be thinking flaky right? Well, she ran this stuff through her computer like Max's digestive system and had told me that Max has high acid levels in his stomach. Now I NEVER mentioned to her that Max was on prilosec for this. I had mentioned the other meds and got off track on those and never said about the prilosec. She also went through to his spine with this feed back and pointed out to me where Max was having stress on his spine and had said down low at the bottom of his spine and then pointed to his chest area and sure enough that is where Max is curved in the 2 worst places. And she has never seen Max's spine. He's always been dressed.

She had also mentioned that it looked like Max had a concussion (sp?) and spine injury. Now, this is where I could have used Jim. Of course he has spine stress now cuz of the curve and I have to admitt I have bonked his head a few times going down the hallway and into his room or coming out of the bathroom after a bath. He's gotten so darn tall that I've miscalculated his size and the door size. So, I should have asked more in detail as to how she knows that it's old or not like newer after his accident. The only thing that came to my mind was that we don't know exactly what happend with Max when he fell in and so my first thought to that was maybe he did hit his head when he went into the water which gave him a concusion and spine injury.

Of course the Hosp didn't find head injury on the outside but that doesn't mean he couldn't have had a concusion.

She said also that 2 parts of Max's brain aren't functioning correctly (I had to giggle to myself in thought thinking, yeah, the right side and the left side) She know's what we were told from the Dr's and that he has global brian damage but, she had said what 2 parts and of course I can't remember (what part isn't working for me LOL). I'm going to give her a call tomorrow and ask my questions that have come up. For some reason I think she said something about the front part of his brain, which would make sense cuz of the type of seizures we see most.

She said that she did some healing on his spine and those parts of the brain through natural energy so, I'll go see her a few times and see what happens. She had said that she worked on a child of a near drown and that they were told the same thing and he worked with her and now he is walking.

Of course I didn't ask detail about this either where I think Max's nurse would have or Jim. LOL She also had a life threaten health prob that she had told me about and that she was cured through this type of biofeed back and that is how she has gotten into Reiki and all this.

Max came home on Sunday for his sleep over. He did great up til 8:30 pm. He ate well, very alert. Looking at the new kitty which I think he really came back to us thinking about twister cuz we had just gotten twister before his accident and he sure looked at this little one.

I had him sitting on the floor with me and he held his head up pretty good. Best I've seen in along time. I tried to get him on his tummy but, that one arm (right) seems to always want to be stiff and I know it's him pushing it out. Every other part of his body is loose. I think he did like me rolling him over though. Got this almost smile on his face when I did it. LOL

I tickled his feet and he'd lift his leg up to get away from the tickle. Both feet responded to this and I also would poke the inner side of his legs between his knees and ankles and he responed to this. Now he hasn't responded to this the last time I had done this (few months ago) so this is a new response. He's almost to touchy now with some things. Just talking to him can make him go stiff with his whole body.

His night time like I said at 8:30 he postured so bad and got all red blotchy in his skin like he used to. He even cried. So, gave him his sleepy med to help him relax and eventually he did.

He woke up fine this morning but, I was rushing to get ready for horse riding with him so, I tube fed him his formula.

He was doing really well with horse riding (holding his head up well, balancing himself really good) but, that dumb ol reflux he has must've pushed up some of that formula and he had to cough sooooo bad and just couldn't. His lips started to turn some purple off and on and he was breathing really hard. Now, dumb me taking everything for granted and not just plain ol thinking, has not been bring home his suction machine or oximeter from Sugar Lake. And even if I had, I wouldn't think to bring it to riding. Max has been doing so well and even his cold he had, he didn't need suctioning. He coughs so well on his own that I don't know what happened.

Suzi said we could call 911 or I could chance it and take him home. Of course I left my cell phone at home and it takes at least a 1/2 so, we called 911.

Usually I just have to make him cough with a tickle in his nose with a suction cathater. Didn't have one of them either. I tried straw, a q-tip. But, sometimes I have to go deep into his nose and almost down his throat from there. So, I could do that with the straw and q-tip of course.

So here comes a whole baccrade of ambulance (2) and fire rescue (1), sherrif called to say he was in Buffalo and would be awhile before he got there LOL. Like 8 people there.

I just told them I only need a suction cath and I could get him to cough. Not to get all tech on him. They were very, very nice and very interested in Max and his condition and his horse riding. They gave him a Teddy Bear :o)

So, that was my week with Max and by this afternoon I was emotionally tired so that's where the nap came in.

Oh and his wheelchair didn't lock in the van's lock thing and so when I took a turn around a corner Max went flying into the side of the van.

I got some cute pics of Max and the new kitty that I'll put up tomorrow (PROMISE!). Kitty sure liked Max's lunch. Crawled right up Max's wheelchair to the table. LOL

Hope everyone is still staying cool. Heard the end of the week should be nice.

Take care,
Lisa

Monday, August 18, 2003 10:24 AM CDT

Hello,

Hope everyone is finding a nice cool place to hang out at. It's been really warm the last couple days, huh?

Max comes home Sunday for his sleep over and it works out good this day cuz it's my birthday also. But, I hope it cools off cuz we don't have central air and I hate to take him out of his lake home, where they do, only to come here and sweat his little butt off.

Max has been having some rough days and eves. Lots of seizures and posturing. Don't know if it's the med change or what. He was even crying out some on Saturday night. I know it's not the heat that's bothering him cuz like I said they have air there. Now if he was here we would be probably using the heat for a reason.

So, we missed horse riding today for a couple reason's. The humidity and Max having a rough weekend. They had to give him his sleepy med to help him get some good rest and being he's not used to getting that, it makes him sleepy all morning. He's very hard to hold on to on top of Toby when's he's sleeping.

I did get Max in the pool last week finally. Of course he was having a rough day this day too. He started out fine and the water was just right so I was able to get him in without him getting upset. He did well at first and I was able to bend his legs and stretch out his arms.

But then he had tons of seizures and got really stiff on me so, I took him out and let him relax. After awhile I sat him up and talked with him and got him back in the pool (I had taken his life jacket off at this point for fear of having to cut it off cuz he was so stiff). I had him sitting on one of the steps in the pool with his legs bend down trying to get him to hold his feet down. But, he started to float away on me LOL. So I just let him float with my arm under his head and shoulders and he feel asleep. I let him float like that for awhile figuring it must've been relaxing after all the seizing and posturing.

I'm trying to not get bummed out about Max and hearing of his not so good days. It's so fustrating not knowing why. I'm just keep praying that it's the new med change, a growing spurt, something that is fixable. He was doing soo well out there, maybe he's just now gettting comfortable out there to show his true colors LOL. It's just those damn seizures that are upsetting him really. We feel so helpless in trying to get them under control and when they are doing pretty well we think we can get them even better and then things turn out worse.

Jim was unable to get an old computer from work so, if anyone knows someone or has an old one they would like to get rid of and donate it to Sugar Lake that would be GREAT.

I've seen them once in awhile at garage sales but always afraid that they don't work (and never thought of getting one for Sugar Lake at that time).

I talked with Pastor Joels son, Derek, this last weekend. I told him that I've been asking for prayers for him and his family from all of you guys and keeping updates on how he's doing. Derek said that his dad came home last week and is staying in the church youth room cuz their house is not handicapped accessable (Which we totally understand how that goes). Pastor Joel is getting out patient rehab and is still unable to walk but, is working hard at it along with other rehab stuff I suppose. He sounds like he's keeping his spirits up with his humor. He's an amazingly strong man. So, if you could please keep him in your prayers along with the whole family. We know all to well the adjustments that they have had to make and the ups and downs of such adjustments.

I made an appt with Max's reiki lady this wed. I looked at her website and she has quite the schooling back ground and is a Dr./Rev. From what I understand this whole thing is to provide more accuracy and precise wellness tips.

The new little kitty (Belle) and Moo seem to be getting along better. Moo just likes his down time and Belle doesn't seem to understand that. It's called getting older and Spencer doesn't seem to understand that either (when Jim and I like to have the down time and just sit on the couch and veg with TV. or nap LOL).

I've have a couple of blurry pics of the boys but, will have to get them up later. I have to get myself going here and get out to get my Maxwell fix. Spencer slept in late cuz we had a busy weekend of play. Sat. Spencer went boating with us (and a few of our friends) and swimming of the boat and then off to Grandma's for the night and Jim and I went to Laurie's b-day party. Then Sunday picked Spencer up and he swam with us in Jill's pool for awhile.

I'll update at the end of the week to let ya know how Max's been doing this week and if things don't get better, I just may have to talk with his Dr('s?). to see if there is something more going on.

Lisa

Friday, August 8, 2003 5:46 PM CDT

Good evening,

I'm being lazy this afternoon and only cleaned one of my jobs. So, when Sunday comes and I have to clean the other 2 I'll be grabbing and wishing I had done them Friday. LOL
It's hard to clean on Friday by the time Jim gets home it seems so late. Spencer always had a field trip or went to a friends house and then I could start like at 2 and be done by 7pm.

So, about Max. He's been a busy boy this last week. He went horse riding on Monday and didn't do so well. He was weaned off one of his seizure meds and on Monday I could tell. He seized none stop all the way there and then of course he was so tired that he slept while horse riding the whole time. We could barely keep him on Toby. And Toby must've felt that something wasn't right cuz he was antsie and would hold still when we needed to stop. I guess the only good thing that came out of this ride is that Max obviously does help and can hold his own while awake and riding. Even his head kept coming out of the helmet when he was sleeping. So, that proves that he tries to keep balanced on Toby and ride.

I called the Dr. to get this new seizure med started. And now he's had 2 nights of this one. He did seem better on Wed. when I brought him home for dinner and Reiki without this new drug but, last weekend and Monday were kinda rough for him so, we feel it's better to start this one and try it.

Like I said I brought Max home for Dinner Wed. night (oh, he had school therapy on Wed when I went to pick him up and he did really well and was very flexable. The PT lady was still very impressed with his loosness which means I will go ahead and lower his pump in the eve :o) Anyways, I had Max eat in the kitchen at the table (I'm the only one who uses the Kitchen table, everyone else eats in the living room LOL) but a friend had stopped over so, Max was facing the wall and I have dried plants/flowers and old pictures from my mothers days (opps day I say old?, sorry mom.) Lets say black and white pictures before they had colored ones. Ok, not any better. But, Max sure liked them. He was looking at this wall and would not concentrate on eating. I thought it was the food I had made him but, that didn't matter. He just wouldn't open his mouth and would bit down on the spoon and not give it back. I didn't really think about it til I finally gave up that he was just to busy looking at this wall.

Spencer was playing a computer game so, I brought Max over there to watch and he really looked at this too. He was sooo alert. I took pics of him to show you but, haven't finished the film yet. Max really likes computer that I had asked Jim if his school had any old ones to donate to Sugar Lake and he thinks they might. So, this will be great for the kids at Sugar Lake.

Then we went to Reiki and Max did good there. I think I'm going to try and go to them regularly and also try this other thing that she told me about but, I can't explain it cuz it's ..........like a body analysis. Kinda like biofeed back thing and what not. I'll let ya know more when I talk with her more about it (and price LOL)

Spencer's football didn't pan out. I guess when you go to football camp for the first time (3 grade) your to know all that there is about football. They don't even explain the details about how football is played and what you do when your on the defensive and what to do when your offense.

Like I always said, Spencer is our brainy boy and Maxie is the sporty boy. I told Spencer he could play it's just that he'd have to have one of his cousins explain it more and maybe work harder at the game then some kids. He just doesn't care enough to go that far with it. Spencer likes mind games (oh great LOL). The mental challange I guess you could say. Is that right?

I remember Max when he wanted to play ball or climb a tree. He wouldn't stop til he hit the ball or climbed that tree. I had asked him if I could help him climb the tree and he just screamed at me "NOOOO, I don't need help". He was so mad and just cried. But, he did it.

Spencer and I went garage saling and out to see Max today. On the way home we stopped at a farmers Market and of course there happened to be a truck there full of cats and kittens for free. Guess what we got? Yeah, ok, some veggies and homemade bread, but, also a new little kitty. Her name is Bell and she looks somewhat like Twister. I could have taken them all but, I wasn't even sure we should have taken this one. Spencer talked me into it LOL.

I gave her a bath cuz she kinda smelled dirty and now she smells like BARN!!! She's pretty scared and was easy to bath. Didn't even attack like they do no matter what age.

I'll have to finish the film off with pics of her and let you all see her. Mooski (or other cat) so far doesn't seem to mind her (hope he ain't thinking squirrel bait) but, she sure hisses at him. Surprisingly being she came from a truck load (barn).

Well, we are hoping to get out on the lake tomorrow (Sugar Lake) and stop to visit Max and take him in the pool. I just never got around to it this last week and I felt the water today and it super warm. Now I have to get him in and with Jim there, I can get pictures.

I think that's it. Have a great weekend and once again thanks for being there for us and giving us such wonderful support. I may always sound like everything is just fine but as you know......in my heart it's never going to be really fine and we will always struggle with what has happened to Max. We just keep praying for continuous strength and healing for Max.

Oh, Pastor Joel! He's doing well. He's talking and wants out of the rehab which of course he can't cuz he needs to learn to walk (he said he's ready to crawl out if he has to)Hey, he's got spunk and that will get him every where :o) He's had surgery on like his face, ankles but, is coming around better then expected. The prayers everyone is sending his way are definatly working and would like for you to keep sending them.

Thanks again
Lisa

Monday, July 28, 2003 8:17 PM CDT

Hello,

Well, we've made it back from our vacation with no problems. Well, I shouldn't say NO problems.

Saturday the 20th we had a surprise b-day to go to so, we left on Sunday the 21st. I was so glad the week was over and time for some R & R.

Max had a Dr. appt on Monday the 21st (his nurse, Kristin, took him for us) with his ortho to check out his back and hips. He said everything looked stable. His spine curve is looking stable. No worse but, not better I guess. And his hips look fine except for the one is like 2/3 in place and the rest is out (not good at fractions so, what ever is left of 2/3, 1/3 ? LOL). He said that this was the way his hip was before so that it hasn't gotten worse but, we don't remember him every saying that. Just that it could possibly pop out of place and told us of some range of motion to do for him.

He said to just keep doing what we are doing cuz everything looks stable so.......... Max is still horse riding. I'll get to that later.

Anyways, so off on our trip we went. Weather was good for about 21/2 days. Monday and Friday it rained. We did the boating thing and spent some time at the island that has a lake in the middle of it (they have a path to get to the lake from the outter lake). Lots of people hang out there on their boats playing. Went to the island that has the big sand hills. Meet some people there and chatted with them. Took the kids tubing behind the boat (Jesi came with us. Spencer and Max's cousin). Road on the bike trails a few times.

Oh, one day when we spent most of the day on the boat, we came back to find our HUGE cooler gone. We just bought this one at Walmart. It's take 2 people to care it. We have a meat cooler and then this one was the miscellanous stuff and then our pop and water and beerin it. So, we reported it to the hosts and then called the sheriff. The next day we got a knock on our camper. The host found our cooler in a campsite that doesn't get used much. Of course the beer was gone but, the rest of the stuff was there.

I have to admitt I was pretty upset about this being it was during the day they came and took it. Made me feel nothing was safe with out us there to watch it.

So, we threw out some of the things we thought they had maybe messed with and bought new.

I had hoped that they got really drunk and puked LOL. We think they were pretty young kids who took it from what other campers say they saw who looked suspicious.

There was also another report of a cooler taken, fishing poles taken and also money being taken out for the money pole that you put your money in for camping. That had to be a tough job if you knew what this pole looked like.

So, we came home on Sat and Sunday we went to get Max for his sleep over.

When we walked into his lake home he was crying for some reasone and we went over to talk with him and told him he was coming home and he didn't cry again.

When we got Max home he talked up a storm at me when I was taking his brace off. Making his little sounds that sound so much like he can get a word out at anytime which of course we encourage so much.

Max got upset around the usual time at night. But, when we'd go talk with him he would calm down. We rented a movie and I just held him and he was fine then.

Bed time is always interesting. He looks at his lights that shine and move on the ceiling so intensly. He so darn cute and I love watching him look around at the lights.

He got upset later in the eve. We give his tummy meds at 5 pm now with his supper and this works well at his lake home and they haven't had to give him maalox but, he for some reason always gets a little wild here at home in the eves.

We're still weaning him off one of his seizure meds and it hasn't made a diff as far as seeing his seizures being worse. I have to call the Dr. to see if she wants to wean him off the other first before trying/starting the new one.

Max made it to horse riding today. Didn't think he would being Spencer started football camp today. No one told me they were actually going to play football in the hot sun for the whole time and I never sent water with Spencer so, when we picked him up he was pretty beat and tired. Learned my lesson. Hopefully tomorrow will go better for him.

But, Max had a good riding. He had Toby today and we used the indoor arena. Max was soooo bright eyed and looked all over. Before in last riding times when outside the sun was to bright for him to open his eyes. He seemed to really enjoy seeing that he was actually riding a horse.

As part of the riding we have Max ride Toby backwards. When we told Max what he was doing (backwards riding) he made this smile (a couple times) that I have not seen in ages. And this was NOT a seizure smile. It was our ol little Max back for a few moments. If only I could have froze those few moments in time and just sat and looked at him I would have. Or if I would have been able to at least take a picture.

It's so hard to describe this look but, it was MAX that's for sure.

But, after riding for so long he started to get real loose and limp. He did get stiff in his arms and legs a few times when we had stopped but, then we started walking again and he loosened up righ away.

The jiggleing thing really helps calm his tone down. That's why we would love to get this bed that vibrates for him. But, we are having trouble with MA and Ins. deciding as to why we need THIS bed. And with Max living at the lake home, the cadi money he has is pretty much used up. But, I think we'll get it figured out. Just alot of paper work and............oh, I'm not going to say what I really want to say LOL. I don't want to get on my soap box cuz I may never stop LOL>

Ok, I think I'm done. It's been nice out long enough that I would like to get Max in the pool out there and play with him. So, I'll let ya know if it happens and try to get some pics. We took some of Max horse riding but,they turned out grainy.

I have a pic from camping. We wrote Max in pine cones and kept it there the whole week. We talked with Max alot when we were up there :o) ALso, saw alittel red haired boy about the age of Max when he camped with us. Man was he cute. He acted alot like Max also when riding his bike with the training wheels. Going to Cass Lake was the first time for us since Max's accident so, lots of reminicing (sp?) and can't believe it's been like 4 years since he was up there with us.

I haven't heard anymore about Pastor Joel and how he's doing. I'm sure prayers are still needed and thank you so much for thinking of him and his family. I'll find out this week how he's doing and let you know.

Lisa

Saturday, July 19, 2003 10:04 AM CDT

Good Morning,

Thought I would update on more time before we leave on Vacation. This would be the first year for Mooski (our cat) being home without his sister (remember she got hit by a car last fall). So, we found a babysitter for Moo. So we have someone staying here while we're gone.

I want to say THANK YOU for all the prayers being said for Pastor Joel and James Robilard's family.

Pastor Joel has been upgraded from critical to serious condition last I heard. He was or is going to have face surgery and has had leg surgery. Both his face and legs are pretty broken up from what I heard.

But the great news is that when they let him wake up some (drug induced coma like they did for Max in ICU) He was able to respond to their questions with thumbs up or thumbs down.

So, please keep Pastor Joel in your prayers. He still needs them very much cuz he'll have a long road to recovery I think.

Maxie had a good Dr. visit with his neuro. She was very pleased with what we've told her about him. Especially his awareness and his tone (not being stiff in any of his joints).

Now that his seizures have changed to being really short (not lasting more then 15 secs) she would like to take him off his seizure meds that he's on now and replace them with this other kind that we haven't tried that works (supposivly) well for shorter time seizures. This new med is only given at night so that would be really nice to not have to give meds all day and only the night time one :o)

We are also changing his Prilosec (acid blocker) med. I read in the Star and Trib that Dr.'s are finding out that some meds should be taken at certian times of the day being that our bodies change throughout the day. Such as in Max's case stomach secretions are at their highest peak in the evening from like 10pm-2am. And Max does seem to have more problems with this in the eve and we give him Maalox almost every night and they vent him and get lots of gas out from his little tummy. ALso this new seizure med shouldn't be given with Maalox cuz it disturbs the absorbtion of the med. This is what made me really think we need to change something here.

This prilosec is also a time release thing and we open the capsule up and dissolve the little beads in baking soda (we were told by the hosp to do this to get the med down his tube). Well, this never made sense to us to do this and think it may have never been helping Max in the long run. So, now we are going to just open the capsule and mix the little beads in food and have Max take it orally.

We also talked about calcium disturbing the absorbtion of seizure meds. Jodee had heard that this will do this so, we just went ahead and decided (with the Dr.'s ok) to change the time his calcium is given.

Now we'll see if there's any changes in Max's evening times behavior and if his seizures change cuz of the calcium. Wouldn't that be something huh, if they worked the whole time it's just that the calcium was not letting the full med take affect.

Buffalo had the rely for life last night which they do every year. I told you guys of this last year. It's for raising money for Cancer research. THis year we bought two bags to color and place around the track to be lit in Memory of my Dad. Spencer thought it was neat to be a part of it in this way and made a beautiful bag for grandpa (spencer never met my dad cuz he had passed away before he was born).

They also had bags lit up in the bleachers spelling HOPE which was cool. The cerimony they put on is very emotional and they have inspirational speakers talk from kids to adults. DJ played late into the night for those teams having to walk the track all night (12 hours) It's kinda like tag teams. Some sleep while some walk and then switch off.

Well, it's getting late and I have tons of stuff to do still. Packing, packing and more packing and errands to run.

Max comes home for sleep over the sunday we get back.

I'll see you all on the again then on the 29th I think will be the next update after Max's sleep over.

Take care,
Lisa

Tuesday, July 15, 2003 8:43 PM CDT

Good evening,

Thought I would do a quick update. I'm 1/4 through my busy week and still have tons of stuff to do and 1 more appt for Max.

Max had his baclofen refill last Friday and his Dr. was willing to turn his pump down being he seemed loose enough to go ahead and do this but, I chickened out though for one reason, it was a friday and Max's history on weekends not going well was to much in my memory and we had a busy weekend planned out. Second, I'm not totally sure that he doesn't need his pump up some at night time. He does get upset at times but not all the time. The Dr. has agreed with me that this is just Max and not a baclofen related thing but........I'm just scared alittle I guess.

Max was to come home Sunday for his sleep over but, he was running a temp and had other things running (if you know what I mean without having to use the actual word LOL).

So, we cancelled his sleepover and called Sunday evening to see how he was doing and I guess he was fine all day with no temp or the other. Guess the other nurses said that he did have baked beans for supper the night before LOL. So that may explain the one problem but, the temp? So, I guess all in all it was safe for him to stay there to be sure. Spencer gets so nervous about getting sick and especially before vacation which I can't blame him.

Also on Friday Max had custom made wrist splints made and of course the first night (following the time they should be on and off) his wrist were very red for a long time after taking them off. I put a call into the OT at Childs and she'll call tomorrow. We even cut the time in half for when they were to be on and still his wrist were very red.

Monday Max had horse riding finally for the first time this summer but it was cut short cuz of the weather. They have the indoor arena done but, no lights yet and with the weather dark and cloudy it was to hard to see in there (But the arena is VERY NICE. And look forward to when we can use it. I'll have to remember the skeeter spray for Max cuz he got bit up pretty good in just that short time.

Spencer and I brought Max back to the lake home but, the rain and lightning was freaky on the way back. Got Max all comfy in his recliner and he started wiggeling around and moving his arms and legs and then he made a big kick with his left leg. Just amazes me that he can do this and makes me wonder if he is trying so hard to move himself and this is what happens. He seems to do it when uncomfortable or well, looked like he had to go potty to me actually. He was doing the grunt and push thing LOL.

It's been one of those emotional weeks for me and I don't know why. I guess just the whole thing once again and then some. Wrist splints not working, anxious to have Max home for a day (and not finding the time this week that's for sure) and then the mail always brings such good news. We have a parental fee that we pay every year for MA and they go off your income but, this year with the budget cuts, we are getting slaughtered with higher fee (from $300 a year to $1445.61 a year). Quit a big jump. I guess I wasn't expecting that much. Also, we wanted a new bed for Max and that doesn't seem to be going very well (this one has a nice mattress and it has a cool massager in it) and we are having trouble getting him a new stander. He's out growing his and by the time we get a new one he'll definatly need the new one. MA is questioning as to why he can't have a cheaper stander and it makes me really made that they question Max's therapist as to why. There's other stuff too but, it's just people that make me angery when they don't explain themselves when it comes to seeing Max and why. When it rains it pours right?

I guess all this is just getting to me and wishing that Max could just miraclousy (sp?) wake up from all of this and be his ol' self.

But, I guess we'll just take each day at a time and get through it (once again). We'll see how vacation goes. I know Max will be on our minds. We go camping to the places where Max came with so, the memories are always there.

Max sees his neuro this Thurs and I just think that she'll turn his VNS up or have it go off more often.

Max will come home for his sleep over the Sunday we get back so that will be a nice return home for us. I'll try and get some pics of him when home.

June 16th, 2003

I needed to add this in as I just found out that my sister & brother in law (Laurie, John) Pastor (Pastor Joel) from their church just had a terrible plane crash and is in critical condition (Pastor Joel was flying the plane and something went wrong with the engine and he had a passanger with him who did not make it)
Not only is he their Pastor but, Pastor Joel and his wife, MaryLou have a son, Derek (who've I've talked about before) is really, really good friends with Jeremiah, Laurie and Johns oldest son. As is Pastor Joel and Marylou are very good friends of the whole family.

Jim and I know Pastor Joel and his family quite well also. And they were a big part of our family when Max had his accident. They held a prayer service in his church for Max and came to say prayers for Max many times at ICU. Since then they have kept Max in their prayers in church and at home.

So, I'm asking all of you who read this to PLEASE say a prayer now for Pastor Joel and his family and that he recovers from this terrible plane crash. And to also say a prayer for his passangers family. We're so shocked to here of this news and feel so helpless in what we can do to make it all better. Thats when the prayers come in. It's the most powerful help we can give them right now.

Thank You so much and God Bless all of you.

Lisa

Tuesday, July 8, 2003 9:51 AM CDT

Good Morning,

Sorry for the far and inbetween updates. Being summer and all, we get pretty busy around here.

We had a really nice 4th of July weekend. Went out and about and saw some friends that we haven't seen since last summer.

It was to warm of course to take Max with us. But, there was lots of talk about him and how he's doing and everyone seemed excited about his lake home and how wonderful it is that he has a place to be where he can get the cares/attention that he needs.

End of this week is going to get busy. Max has a Dr. appt to have his pump filled and I think I may try to have his pump turned down in the evening. I haven't really been pushing to have his pump turned down cuz I'm still kinda leary about doing so. Especially when his appt falls on a weekend (in case things don't go well and we have to rush him down to St. Paul and turn it back up, which has happened before). But, I think we'll be home this weekend anyways and try and get some things done around here.

Max is coming home this Sunday for a sleep over. And then he'll start horsing riding on Monday. They are finishing up the indoor arena so that the kids can ride indoors whether it's hot or cold.

Spencer has a field trip this coming Friday also. So, hopefully I can get him off and pick up Max in time for his appt. (everything seems to fall on the same time slots LOL).

Max is also going to have a specially made wrist splint for his right hand this Friday and then we'll make another appt for his left hand. His right seems to be the worst. He can open his fingers straight out and his wrist flat but, it's very tight. He likes to keep that one wrist curled inwards. The other hand doesn't curl in like that but still is some what tight when spreading the fingers open.

Jim and Spencer went out to see Max last thursday and the Spencer and I saw him yesterday. As I was there I heard that a nurse has just called in with strep throat and she had just finished working the weekend soooo I pray that Max doesn't get it. Being he's coming home this weekend and then we will be leaving soon for a weeks of vacation soon. Our luck someone will get it while on vacation.

Got the football registration for this coming summer and Spencer wants to give that a try. I sure hope he likes it and sticks with it cuz he sure could have another interest other then video games LOL.

I met my mothers future husband this last week. He seems very nice and they seem to be very happy togheter. We went out to see Max and they thought Sugar Lakes was very nice and that Max looked really good.

Max's cousin (Jeremiah) and his friend (Derek) went out to see Max a couple weeks ago. I haven't talked with them yet about their visit with Max but, from what I heard it went well. I thought it was really special of them to go out and see Max and to say some prayers for him. Their such neat kids (or should I say young men :o)

Well, I will let you know how the Dr. appt goes and our weekend with Max goes and his horse riding. I'm trying to think of something fun to do with Max on Sunday. I guess it depends on the weather. The skeeters have sure come out full blown now and we can't even venture out in our yard no matter what time of day it is without getting maulded.

Thanks again for all your prayers, Max is looking very aware still and We're looking forward to spending time with him on the weekend day here when no one has to work and we can just play with him.

Lisa

Sunday, June 29, 2003 10:12 AM CDT

Good morning,

Sorry It's been awhile since my last update. Been busy here as usual.

Jim is able to go back to work tomorrow so, things will fall back to a normal routine around here. Felt like one big long weekend with him home during the weeks. He's axious to get back too being this is the busiest time of the year for him and getting the school cleaned with no school going on.

I think the last time I updated was when Max spent the night at home. I find that having him home during the weekday doens't leave me much time to play with him. When I get him home there's not much time before I have to go to work and then bed time when I get home. The next day he goes home and not much time there either. I think I'll schedule home time on the weekends.

A week ago last friday the nurses thought Max was getting pink eye. We decided to see how it goes over the weekend cuz Max can get red eyes some at times anyways. That weekend we spent the whole weekend out at Lauries and Johns for a family party and good neighbor days. Spencer and I got to walk in the city parade behind Laurie driving Bergies pizza van (a little go cart that looks like a van) and we threw candy to the kids. Spencer has always wanted to be in a parade. It was alot of fun.

Well, come Monday Max's eye's were pretty bad so we ordered meds for his eyes. I saw him on Tuesday and they looked pretty good. I think I got a smile and a chuckle out of Max that day. I was rough housing some with him and he smiled and made a laugh unlike his seizure laughs but he then went into a siezure so........

Thursday night we got a call from Sugar Lakes saying they think Max should see the Dr. Friday cuz his eyes were so red and puffy and Max was crying. We were trying to decide if we should take him to the ER and called the on call Dr. in Buffalo and they agreed that we should. Got to be kind of a late night. We picked Max up at 9:30 pm but, the ER Dr. thought he should see the eye Dr (she said the eye Dr. could see thinks better they her. We thought that was funny LOL)

So Max spent the night and he saw the eye Dr. and he just gave him different eye drops. Said the ones that Max had he doesn't even use for kids. They were to hard on his eyes.

Max is to start horsing riding tomorrow (they built a indoor arena so the last couple rides were cancelled). He hasn't gone yet this year. But, I can't take him tomorrow either cuz I'm taking Jerry to his eye Dr.

My mom is back from Texas for the summer with her fiance (sp?). This will be the first time I get to meet him. We're going to go see Max on Tues.

Wed. I'll take Max to the Reiki session at the library. I think he likes these sessions. It's not that I expect great healing to come from this but, some relaxation I think he gets out of it and maybe some more awareness. That last time my karate teacher did some on him out at Sugar Lake he was telling me what he was doing and saying a prayer over him that just made me cry.

Yeah, I still have those crying bout and expect I always will. I cry when we bring Max back to Sugar Lake after he spends a night here and I cry at places where there's lots of kids and lots of playing going on. I think of Max often and how he would be having so much fun right now if he was there playing too with all the kids. It's just that darn ol spot on my heart that will never heal closed that keeps those tears coming. of Course my brain thinking all the time doesn't help either that starts it all.

Well it looks sunny out today. I should go clean the bank and get outside and enjoy it while it's here.

I hope everyone is safe from the storms we had last week. THere was some nasty stuff here last eve that we didn't know about (but saw it. We were in the car driving home from a friends house) Mcdonalds wasn't serving cuz of tonardo warning in Buffalo and St Micheal and Monticello.

I do have new pics. Just haven't found the time to scan and crop and print them on the website. I'll try to get them on soon.

Take care and keep the guestbook letters coming. We love reading them. Thanks Pam for your wonderful inspirational quotes/passages. They click with me so many times when I read them :o)

Lisa

Thursday, June 19, 2003 8:27 AM CDT

Good Morning,

Well, our long weekend of vacation is over (or I should say mine). Jim is still off work and Spencer still has his summer off).

Jim and Spencer had a nice time up north. Very nice weekend to be up north (or anywhere, even being home).

I had a nice weekend with my friends. We did go to the casino (played nickel slots and came out with 28 dollars) . One lady was playing two slots at the same time and was told she couldn't do that earlier someone told me. So when I had asked her if I could play she said no and practically bit my head off saying so (good thing she didn't have any teeth LOL).

Monday we took the boat out on Sugar Lake and stopped to get Max for a boat ride. It was so hot out though and our boat is so low that unless you go real fast you don't get much of a breeze. We didn't keep him out to long. That's what nice about the pontoon boat they have. Max is up high enough to look around and get fresh air and be under a canopy for shade. I held him for awhile but that gets hard and hot too.

Tuesday we took Spencer to Valley Fair. We were there for quite some time. By the time we went home (closing) my balance was way off.


Now we have Max home. He came home yesterday and Grandma came to help with him while I went to work.

I just realized that I screwed up is meds last night (gave to little of a seizure med). So, maybe this was why he was upset and seized alot. I feel like an idiot. Here I had written down the meds that he would need and everything for grandma thinking I wouldn't be home by 8 and then I mess it up. But, on the other hand, it's no diff when weaning him from his meds and that would have been the next one to go so, it's not a life threating thing (can you tell I'm trying to comfort myself LOL)

So Max was up off and on last night and is sleeping so well now that I thought I would let him sleep in.

Yesterday though when he got home he was very alert and would look right at you when you'd come talk with him. He would try so hard to turn his head toward you. He is very, very alert.

A week ago last wed. my karate teacher came out to sugar lake to do some Reiki with Max. He was having me help and should me some things to do. I may try it today.

And then one of my karate buddies is the local paper journalist and he had done articles on Max at the time of his accident and he Came out last thursday to write about Max and Sugar Lake. It's the wright county journal and will be out the 26th I think he said.

So, with all that behind us. Now back to working deciding if I should have Max's pump turned down some more. Still kinda nervous about doing so. He seems to be fine and gets upset just at times he wants to.

Seizures are still there of course. Not much change in them.

I'll play with him today and see what happens. I told him last night that I want lots of talking from him today and some good range of motion and to show me his stuff that he can do. Not much stuff to do here being it's all at Sugar Lake. We'll give him a good bath in the whirlpool too.

I have new pics to put up, just have to go get them developed first so, it may be awhile.

Take care,
Lisa

Monday, June 9, 2003 8:20 PM CDT

Well Good evening,

I've been meaning to update for a couple days now and the time doesn't seem to allow it. Jim has been off work with a sore elbow (tendenitous ((sp?) that's been bothering him for quite some time so, my regular routine is not so regular. I Keep thinking everyday is Saturday now that Spencer is out of school and with Jim off work for awhile. LOL

We've been busy though. This last weekend we had some graduation parties to go to. Burl (our nephew) graduated this year and Derek (friend of Jeremiah) also did. Jacob (another friend of Jereimiah's) graduated too and I thought he graduated last year(opps).

So,we wish them all the best in the coming years as they go off to school in the fall.


So, where do I start re: Max? There seems to have been so much to tell.

He was to start horse riding today but,cuz of all the rain, the ground was to wet for the horses and it would be hard for us to walk with the horse as they slip and slide in the mud while trying to hold onto Max.

We had another Reiki session with Max at the library. Grandma Congo came with this time (I think Jim should have came and I bet his arm wouldn't hurt anymore :o)

My karate teacher and another man (who just happens to know Grandpa Jerry) worked on Max this time. I also had them do Reiki on me and so did Grandma Congo.

When I was done I went to go see how Max was doing and he sure as eyeing up my karate teacher. Joanne and I have never seen Max look at anyone so intensly. Usually when Max looks at you he can only hold the look for so long and then looks away but, not this time. He was just staring at him and the look on his face was so different.

Max's lips also were moving in a way that we've never seen. ALmost like he was trying so hard to talk. He does curl his lips into a little "O" shape but, he didn't make this "O". His lips were actually moving!

AND he didn't even seize when they were working with him.

The other Man had made the comment that Max is just filled with energy (like my karate teacher had said last time). I guess I'll have to ask them next time what that means. Jim said you'd think all kids would be filled with so much energy. I think it means something else to these guys. I'll find out and let ya know.

My Teacher wants to do another session with Max this weds. so, I'm waiting to hear from him and hope he still can go out and see Max.

Jim, Spencer and I went out to see Max Sunday. I held him in the rocker and he was tired of course as usaul. But, I would tell Max to talk to me and he would make his little sound. At one point he was swallowing and when he swallows he makes a chewing motion and so with this and his talking he made some really different sounds. Kinda like baby jabber. That was fun to hear.

Then when I would ask Max to tell me about his fishing (the nurse just had told me she had taken him fishing a few weeks ago and caught a fish, which I didn't know) so, when I would ask Max to tell me about it he would make his noise and his lips would start to move like when we were at Reiki.

I found this interesting cuz he would stop talking and I would ask him more questions and he would make his sound and move his lips. Every time I would ask him to talk he would and the lips would move. Ok now that I think about it, he didn't always make his sound and lips moving at the same time. Sometimes his lips would move with no sound.
But, someday maybe it will all come together :)

Max also didn't seize at all when I was talking with him. He napped alittle in my lap and then when we wakes up they usually start in.

The wright county journal newpaper is going to do a story on Sugar Lake. The jounalist that did the stories on Max after his accident is in my Karate class and I had asked him if he'd do a story on Sugar Lake being it's a new place and all. Jodee said she would love that he did write up about them so, I guess we'll do that on Thursday.

This weekend we all took off work for a long weekend. Spencer and Jim and Uncle Scott and Jessie are going camping. Spencer wanted to "ROUGH IT". So, we bought a tent but, they are going up north to the usual place we always go. Spencer wanted to just go out into the middle of the woods and throw the tent up. I think he would be bored to death in the middle of the woods and no lake to play on. There taking the boat so, they'd do some fishing too I'm sure.

I'm going to go out with a couple of friends of mine on Firday and go to the casino. Never been there. Spencer was there like I had written last couple journals ago or the last one? Then on Saturday Carrie and I are getting together to hang out and do ????????? Carrie, what are we going to do?

I think the boys plus Jessie are leaving for up north Thursday eve which means Thursday and possibly Sunday I'll get the remote control to the TV!!!! Wonder if I still know how to work it LOL.

Tuesday we are thinking of Taking Spencer to Valley Fair. I would like to take him there on a weekday when it's possibly not as busy as a weekend and I would like to go towards eve more and go on the rides at night time. Jim has off from work til Wed. for vacation. But, his arm is another story so, hopefully it's better after his vacation time plus time off per Dr.'s request.

So, I guess that's the story for this last week. I'm excited about Max and his talking and lips moving. You'd have to see him to know that the look on his face and his eye's are just trying so hard to communicate with you. There's something different about him that's for sure.

I got some pics from Grandpa Jerry that I'll put up. One is from Max's breakfast benefit with Santa claus. I guess Max was really looking at him that day but, like I said he couldn't hold the look for long (Grandpa took alot of pics trying to catch it when he was looking at santa). He seems to beable to do this now better and I hope it just keeps on improving.

Take care and I'll update at the end of next week. Max is coming home on the 18th for a sleep over.

Lisa

Tuesday, May 27, 2003 2:16 PM CDT

Hello,

Hope everyone had a nice long weekend. The weather turned out really good for hanging outside.

We had a pretty busy weekend for not planning one. LOL

Friday night, after I finished work, we just sat around the campfire not doing much of anything (wondering what we were going to be doing this weekend). Spencer went to a friends house after school on Friday. He rode his friends bus home which he thought was exciting. He got home around 8 pm.

Saturday we took the boat out on Lake Pulaski to give it's first summer try. It was super hot in the sun when we were parked but, once we took off for the fast rides, the wind was pretty cold. So, it was sweats on, sweats off.

Then Saturday night Scott (Uncle) stopped over and we hung out again around the campfire and then some other friends stopped over. Pete and Deb Stuger. They've been a wonderful support for us also since Max's accident. We don't see them much so it was a nice surprise for us to have them drop in. Pete's mom has recently passed away so, if you could take a few moments to say a prayer for him and his family that would be great :o)

Then our neighbor Scott stopped over to chat for awhile and then comes one of our other neighbors over with a friend. So, we had quite a few people over and it was GREAT!. Of course no kids for Spencer which bumms him out.

Sunday was Jesi's birthday (our neice) HAPPY BIRTHDAY JESI!!!

Jesi's grandparents live up in Malac (?) Malaca (?) Up where that casino is and that big lake.......anyways, the casino has a big video game room and Scott and Andrew were heading up there on Sunday and invited Spencer.

Let me tell you, Spencer was in heaven. I talked with him later when he was there and he just rambled on about the place and didn't even hear a word I said. Then they went to the farm where Carrie and her family (Carrie's parents) have horses, 4 wheelers and lots of land to play around on. Scott showed us some video and it looks really nice up there. We've never been there but, will have to get up there sometime cuz Spencer wants to go back soon and back to the casino (never been in one of those either).

Jim and I took the boat out on Sugar Lake. The lake that Max lives on. We were going to see if we could get Max out on the boat but, we weren't sure if they had enough docking room for us and they don't so, next time we'll have to figure something else out to get him out in the boat.

The lake is beautiful and really big. Bigger then I thought. Lots of people just hanging out on the lake sides and boats.

Jim fished alittle and caught some sunny's so, when we packed the boat up we went to visit Max and took him out and showed him the fishies dad caught and brought him down to the lake. He didn't seem real excited and when I get the pics developed you'll see what I mean LOL.

Grandma Joanne and Grandpa Ralph went to visit Max and the nurse was asking what kind of kid Max was before his accident so, I brought a video out there for them to look at. And Grandma is so good at sounding like how Max used to when she talks about him and the things he said.

Monday we went over to Scott and Carries and grilled and hung out. Spencer and I jumped on the tampoline some and that just about killed me. Better start working on my cardio exercising LOL.

Now, it's back to the same ol stuff with work and all. But, it looks like the weather is finally shaping up to where going outside is possible.

I planted some flowers on our kitties (Twister) grave that got hit by a car last fall. Then I planted some more for Scooter and MaMa kitty who left and we never know what happened to them.

I read Aunt Bev's guestbook entry about their day with Max and I wished we could have been there. So, nice to hear that he smiled for you.

I'll get those pics developed tomorrow and get them up.

Our calander is starting to get filled for the summer with Max's horse riding and some of that Reiki appts. Burls graduation party coming up soon, camping trips, trying to get our new deck going, stuff like that. Gotta savior every moment cuz summer just goes to darn fast.

Take care and look for the new pics sometime after tomorrow.

Lisa

Wednesday, May 21, 2003 11:26 AM CDT

Hi,

Going to try and update real quick. I slept in this morning and now I'm feeling rushed to get some things done around here.

We had Max home for a sleep over on Monday night. He did fine for awhile and then did his little temper tantrum that he usually does for us. And he did it in front of company, shame on him. LOL. Aunt Laurie and Uncle John were here so he must've figured it was ok cuz after all they are family.

He seems to be having more of these crying spells. Last Sunday he had them and started earlier then usual. The nurse was actually surprise being she has never seen him like this.

I called today to see how he is doing and he didn't want to sit in his wheelchair or stand in the stander so they took him out and took his braces off and just held him and he fell asleep. So, maybe he just wanted to sleep in today like his mom did. LOL

Lots of things are going through my head as to why he's been crying out more. Does he hurt somewhere, is he missing us her at home, is he just being a typical 6 year old? Who knows. I could ask the Dr.'s to do some xrays and check him over but, gosh, we've been down that road so many times and as time goes by, you really need a good reason for them to do all that kind of stuff. Being there is no real consistancy for Max crying out and no certain time, postion, and they can do ROM on him and he doesn't show any signs of being in pain or crying out. I go back to when his legs where.......in the process of breaking should I say. He would just cry when you touched his legs or did his exercises. So, part of me thinks it's not a broken thing.

Max's g-tube came out last Friday while the nurse was getting him ready for bed (shirt got stuck on the tube and popped out). He has gained some more weight so, thinking maybe his g-tube size needs to be bigger. It's in there pretty tight and they like to have some slack to it.

I felt so bad for the nurse. Jim remembers well what it's like to have this come out. Like Joanne has said, these things hurt us probably more then Max. Max seemed fine and cried alittle but, was relaxed later. The intial shock of it all at first of it coming out.

They got the other one in just fine and all is well now in that area except for getting into the Dr.'s to see if he needs a bigger size. Still working on them to squeeze us in down here at the clinic.

Max's new wrist braces are working well. The school OT said that he is much loose in his wrist and his arms are doing well also. I was there when his vision and speech teachers were visiting him. The vision teacher is very impressed with Max looking at things and said that Max seems to like to look at things more then listen to things LOL. She would like to try a hearing test to see what sounds aggitates him and what sounds he response to.

Guess Max went down to the dock to watch some fishing. I think I'll have to get him new life jacket. One that fits when he has his brace on and off. I'll have to get Jim and Spencer to go out there and fish with him (I'm not much of a fishing person so, I'll just watch or help Max out :o)

I heard that Grandpa Jerry, Grandma Karen and Aunt Bev and Uncle Bob went out to see Max last Sunday. I feel bad that we missed you guys. We were outside most of the day and didn't hear the phone ringing. I should give Sugar Lakes number to Grandpa so he could call out there when he wants.

I hope you guys had a nice time visiting with Max. I know he loves the company. Sugar Lakes is really a beautiful places isn't it?

Bev, You'll have to email me and tell me about your day out there or lets us know in the guestbook.

Thank you so much for driving up here/out there to visit Max. You have given us so much love and support in all that has happened and the choices we make. We can't tell you enough how much we love you both and appreciate you being there for us all.

Well, I see that it's almost noon. I should get moving. My butt is getting sore sitting here LOL.

Take care and have a safe Memorial weekend. It's suppose to be nice though so have lots of fun in the sun

Lisa, Jim, Spencer and Maxie

Tuesday, May 13, 2003 7:51 PM CDT

Good evening,

It's was finally a nice day and nice evening. But, heard it's going to get a little icky again. Oh, well. I don't have garden to play in right now anyways. We decided to finally put in a bigger deck in the front of the house and a small one in the back. So I do have to figure out what to do with my flowers til we get the newest of my gardens fixed up after the deck is in cuz the deck is going over my two oldest gardens that we're more weeds then flowers anyways.

Well, after that wednesday when we took Max up to the library he apparently had a really good night. He was up til 1:30 in the morning but, he didn't get upset and stiff like he does alot of the nights. He was calm and relaxed the whole evening.

The next day at karate class, my teacher talked with me about Max. He said that when he came over to the the table where Max was laying he had placed his hand over Max (which I had seen him do while talking with him) and he told me that Max was sleepy and eyes half closed but, that when he placed his hands there his eyes got wide (and the teacher just had to tell me what beautiful blue eyes he has. That Max has just the bluest eye's he's ever seen) But, he was sending energy into Max and then he felt Max sending energy back to him. As if saying thank you :o) My karate teacher said that he actually felt energy coming from Max and that Max he has really strong energy (suppose I would too if all I could do was lay still and not move LOL. Ok, I'm just joking around you know. Just stupid stuff that comes to my head)

Anyways, Ya know at first you think this is just to weird to believe. Even though I saw Max relax very well and even after I was told of his night but, the feeling I felt when I went to work(which I think I had mentioned in the last journal) was just not me. Like I have said my job is boring, and the vaccum gets heavier and heavier and the bank gets bigger and bigger as the night goes on and my feet are just aching when I'm done only to have more places to clean after that.

But, that night I was so awake and feeling happy. The time went fast and it didn't even feel like I had just spent all evening cleaning. The teacher had told me that there was a guy at the next table sending energy my way and that one of the ladies working with Max was sending me energy also cuz she thought I was looking alittle nervous.

You can imagine my surprise after hearing this. I didn't even know they were doing this and here I was saying before I even knew this just how I felt to everyone.

I guess you can say that I have come to believe that there is something to this Reiki stuff. At least I'm not elimenating it from my new things to try for Max and me even :o)

My karate teacher would like to have some private sessions with Max in June so, I said OK. My tacher talks alot about this kind of stuff and he will teach me some. I've grown to believe in him just from the way he talks and I don't feel he is a wacko in anyway or would mislead you in anyway. He's learn alot from the best from what I hear.

Ok, so not on the good side of news. Max had his Dr. appt last friday and she wouldn't turn Max's pump down because his ankles were really tight and not loose as last time. I knew this was coming cuz I had noticed on Wed that Max's ankles were tight and talked with one of the nurses about it. I'm going there Thurs to do a refresher ROM with them and let them do it so I can see and show that Max can bend more and that they shouldn't be afraid to push him alittle more then they have.

This is by no means their fault. Max is still new to them and I can totally understand the fear of possibly hurting him. Kristin and I have been there and still are at times when we have to push alittle more for him.

Ok, and then the Dr. found some bruises and red spots on Max also.

Lets just say we are all learning from this. I NEED TO ASK MORE QUESTIONS when I see these things. I just assume accidents happen. But, when I can't tell the Dr. as to why.........well, feeling pretty stupid about now LOL
And the nurses need to let me know when they see these things show up and to kinda watch as to why it maybe happening. Yea know Max does stretch alot and can easily bump himself in the wheelchair or scratch himself (which I know he has done before).

The nurses are so WONDERFUL over there and love Max so much that I know these are just accidents but, just need to see if we can find answers to them and to try to see if we can avoid them at all possible.

Max has been doing so well over there and His Dr. knows this also. We've weaned him off some meds, he eats all his meals orally, unless not feeling well, he seems to be sleeping better over there. Ok, what's that say for home then LOL. Gol, I'm suppose to be happy about all this and finding myself getting bummed LOL.

We're going to bring Max home this Monday for a sleep over. Suppose I should let Sugar Lake know that I'm bring him home this day.

Other then that. Oh, I was out there to see Max today and his ankles were back to the norm. I really think he was just being a stinker and not letting anyone play with his ankles that week. It seemed to be the way it was going when I would talk to the nurses and when I would try and then the Dr. We also told her this but, she still didn't want to turn his pump down so that noone could say his ankles are stiff cuz of turning it down. ALso when I was there I finally got to see one of his smiles and it wasn't a seizure smile. I had asked him 2x's to smile for me and his left side of his mouth moved out to make a smile. Also he had no seizures all morning til 11:30am Kistian was telling me. So, this is good.

I had also said my goodbyes to him and when I had walked away I noticed he was talking his talk so, of course I had to go back and talk with him :o)

He does seem to being showing us his personality in his own way now. And I find him just as cute and adorable as before his accident. I sure do miss the old Max but, I like this one too (ok LOVE but, you know what I mean).

God Bless to all and thanks for keeping the prayers going for Maxwell. He's seems to show us alittle more each time that he's trying his hardest to come back to us in anyway that he can.

Love to you all,
Jim, Lisa, Spencer and Dearest Maxwell

.

Thursday, May 8, 2003 1:10 PM CDT

Hello,

Hope all is well with everyone. Thought I'd update today. I'm not doing much today. I feel like having a lazy day today. Tomorrow will be busy.

We have an appt tomorrow for Max to have his pump refilled and I think I'll have the night time dose lowered. I guess he's been doing well again and not showing signs of posturing. My Aunt Patty and Aunt Pricella are coming over early to come out to see Max and his new place. Then I hope to get back in time to see Spencer in a play at school. He's a lamb in this play and didn't get any of the speaking parts.

Had Max home yesterday for a bath and supper. Then we went to the library where they have every first wed's of the month a free Reiki session. I've thought about having Max do this before and not to try and have him healed from the brain injury but to help with comfort and any pain he may have or just overall well being (and of course anything else that MAY help him in anyway to recover somewhat would be nice :o)

But I never followed through thinking it couldn't help in anyway but then when I started this karate class and our teacher is big in reiki, qiegong, accupressure and likes and the more and more he talked I thought well what the heck. The accupressure worked to help Max go potty on his own so......

We took Max to the library and it was very quite in the room they were using with nice relaxing music playing. Max was making his snorting sound so, Jim put on the neck brace we have for him and Max stopped the noise. I brought Max into the room and to keep the door from slamming I had reached over and behind Max only to have my purse slip off my shoulder and hit Max right in the EYE! Man was I embarrassed. Everyone was already looking at Max anyways being he's so adorably cute and then here's mom with her big ol shachel (sp?) I get teased about my purse even though it's not big just weighs alot LOL.

Max started to make his snorting noise and I would tell him this is a quite place and to listen to the music. Believe it or not he would stop and look around. Every time he started to make his noise I would tell him this and he would stop. I was very impressed/excited with his understanding and listening to me. The wait wasn't to long before we got to go to a table.

They had five tables going with 2 Reiki people to a table so that's why the session's only lasted 15 mins. A lady let Max go ahead of her (she must've figured Max needed this healing touch bad now that mom gave him a nasty headache LOL)

The lady's seem really excited to do this on Max and watched for a few minutes to see his reaction. I also heard the lady who has a business in town for this saying to the lady that was placing her hands on Max's head to not stay there to long cuz the energy she is giving out may cause Max to have lots of seizures (if she only knew. He can do that on his own). But once the lady left that area and went to his tummy and then the other was down at his legs, Max seemed to relax and his arms slowly started to fall to his side and then "BAM" a stupid seizure brought his
arms back up and he got alittle tense. Eventually he relaxed to the point of almost asleep. Then the 15 mins was up.

Poor guy had to be russled back into his wheelchair and Jim and Spencer brought him back to Sugar Lake.

I called this morning to see how he did last night and he didn't even need his tylenol/maalox mixture to calm him down and sleep. He was up til 1:30 too. So, this made me think Hmmmm..... I myself didn't do the Reiki thing but, I had to go to work and I had energy like you wouldn't believe and the time went fast. I don't know if it was the energy flowing in that room or just me taking Max and trying something different and excited about it :o)

I know this is getting long and just on one subject but, I have one more excited thing to tell ya about.

If you've noticed that some people have been writting in Max's website from QUILTS OF LOVE. These ladys make virtual quilts for kids and you can go look at Max's (page 3 of the website) I guess you can request a patch for them to add to Max's quilt too if you'd like. Just email them (where it says to) and you can write you are and something about Max that remember of him from before his accident or something about him now or whatever you'd like and they'll find make some kind of patch that will have you name and the theme of what you wrote (make sense?)

Look at some of the other kids too. They are soooo cute these quilts and if the child has a website (like Max) they have a link to that site.

The site is QUILTOFLOVE.COM I'll add it to the link on Max's front page being I don't know how to make that work here in the journal.

Ok, better go do some laundry or something to feel I've done something around the house here LOL.

Take care and Please keep the prayers coming for Max's pump dosage coming down. I would love to possibly get ONE mechanical thing out of his little body.

Lisa

Sunday, May 4, 2003 4:31 PM CDT

Hello to everyone,

Thought I would update while waiting for supper to cook. I'm starving LOL.

We went out to see Max today. Gramma Joanne and Grandpa Ralph were there too to visit him.

Max was having his usual lazy Sunday and was very relaxed and alert. He's getting over a cold so he sounded alittle congested in his lungs still. But, he sure talked up a storm with us. Every time we'd talk to him he'd make his talking sound that sounds so much like he is really trying to get words out. And he'd look at us with those big blue eyes and just really look at us. It's hard to explain but, when he looks at things (especially us) he seems to beable to hold his eyes on us where before he wasn't able to keep them there for very long without them going somewhere else (out of his control). So, I feel HE HAS CONTROL of what he wants to look at and not his brain controling him. Does that make sense?

Max lost the other front tooth on Saturday. So, now he has no teeth in the front. His one bottom one is coming in now.

I'm also to tell you per Grandma's request :o) that when Max has to do the number 2 thing (going potty is what I'm getting at here LOL) you can actually feel and see Max tightening up and pushing and grunts alittle too. I think this is maybe cuz his pump is so low and he now can feel the need to push and is able to cuz his muscles aren't so relaxed from the baclofen (the med that is in the pump). I noticed he did this when he was home that day when we went out to eat on Sunday with Grandpa Jerry. I hope though that the nurses can catch this and get him on his commode and maybe then he can go there in stead of the ol stupid diapers. It has to feel much better and work better for him :o)

It was so good to see him today and to see him respond to us in his ways that he does. Of course we didn't get this at home or maybe didn't see it as much. Maybe he'll be so excited to see us some day that he'll get a word or two out or lift his hand to say "HI".

It was hard to leave him seeing him so relaxed and content. He feel asleep in Jim's arms and we just hated to move him. Makes us feel so good to see that he's so comfy in his dad's arms that he goes right to sleep.

I also got some wonderful news today from my mom (she's still down in Texas and will come back in June) She's been dating a guy named Jim and they are going to get married come the first of the year down in Texas. I'm so glad that she's found someone to share in her life. I think we will try and get down there to be there for their wedding even if we just go for 4 day weekend.

Speaking of weddings, Jim and I have been married as of today for 12 years!!! Man does time fly. It flies so fast that if Joanne didn't give us a anniversary card, I think the day would go by without either one of us remembering LOL. It was cloudy and cold that day just like today and it even snowed the day after (slushy stuff). Hope that doesn't happen tomorrow.

Well, I think supper is done so, it's time to pig out and watch a movie (if Spencer will let us have the TV LOL).

Take care,
lisa

Tuesday, April 29, 2003 5:17 PM CDT

Hi,

Thought I'd quickly update before I left for work.

I decided to work for this month just at my regular job and then go back to Bed and Bone come June and work in the eve for a couple hours, 3 days a week. It was just to much for me to work all day and then come home for a couple hours and then off to work again. I had absolutly no time for anything around here and for Max or Spencer.

We took Max down to see his Neurologist yesterday (1:00 appt)and didn't get home til 3:45. Just in time to see Spencer walking up to the house from getting off the school bus. Didn't think the appt would last that long and then traffic on top of that.

But, Jumping ahead there. Max came home for the night on Sunday and we had our mellow Sunday as usual.

I did have an appt for his pump to be lowered on Monday but, he seems to have been having episodes of stiffness during the day and at night now out at Sugar Lake. Why? we don't know. I happened to run into his pump Dr. down at Gillette and asked her about what she thought and She really feels it's just his way of showing he's uncomfortable and that the pump being lowered is not a factor. I guess though I'll leave the pump as is now and work more on his seizures. I guess he's been having more of them and this is why we still ended up down at Gillette on Monday. His neuro Dr. said that from what she could tell by talking with us that she thought that Max's seizures are possibly getting better when he's not being played with and just laying around but, when we play with him he seems to still have quite alot. She said that he does have the stimulated type siezures and that this may be hard to control but, we are working on it and in hopes that if this VNS has a hold on them when he's laying low that we may gets some (prayers for all :o) of the siezures under control when he is getting stimulation.

He's gained his weight back with an extra pound. So, he's up to 43.7 lbs. We're happy about that. They feed him good at Sugar Lake. And the best part is is that it's 99% percent all oral feedings and barley any supplement feedings. I think they have done maybe 2 formula feedings cuz of his not wanting to sit in his chair or just not wanting to eat.

He's ROM is still very good. I was checking him out on Monday morning and he tolerates being bent here and there and has good range in his arms and legs.

He's still going number 2 on his own without any help from the senokot that he was getting and he's off his sleepy med that I had been giving him and quite alot and regularly so that I could get some sleep. Just that there is a big plus for Max. Having 2 hour nursing has gotten him off that icky cloralhydrate and the Senekot is something we had just decided on the day he moved.

Now, Max is fighting a cold that seemed to appear on Monday morning. I guess we have to figure that he may get more colds and what not being in a home such as this and with more people around him whether it be visitors, housemates, nurses, school therapists. Can't keep him in a bubble for ever.

Oh, speaking of the school. They called and have all the paper work ready and will start to visit Max come May. I'm very excited about this and to hear and see their idea's on what more we can do for Max.

Talk to all of ya again soon. Thanks again for your continuing support.

Lisa

Tuesday, April 22, 2003 7:42 AM CDT

Good Morning,

I hope everyone had a very nice Easter. We did. Grandma Joanne and Grandpa Ralph took Spencer and Jim and I out to eat for breakfast at that German restraunt in Montrose and then we all went out to see Max. Max looked good and was relaxed. He did seize quite a bit when we got there. I guess there were just to many of us all at once coming in to talk with him and kiss him. We over loaded him. We gave him his Easter Basket and bought him his fishing rod. Jim and Spencer tried to go fishing but, it was pretty cold out down at the lake. It'll be much nice this summer I'm sure. Joanne and Ralph took Spencer to Raphs daughters house on Sat for an Easter dinner. He had fun and they gave him amd Max such cute goodies for Easter. Sunday we took Spencer to see a movie (man, going to movies is expensive even when you go to the cheaper time and then only to sit and watch finding out that it isn't THAT great).

Max has been doing well again and not getting so stiff during the day and eating well again (He gained some of his weight back that he had lost). He's been sleeping good again too.

I'm trying to make an appt for this Friday to have his pump turned down again and I think that he shuold be having an appt soon for his VNS. I'm not sure what we are going to do with that. I don't have a clear understanding of what his seizures are like. We are going to bring him home this Sunday for an over night stay so maybe then I will beable to tell. Seems we make him seize alot when we go visit. Don't know if it's cuz he's not used to us and our loud mouths or what LOL

I'm going out to visit Max this Thursday. I see the weather looks as if it's going to stay nicer out. Lets hope so now and no more blasts of cold.

I thought I had more to say, but, guess not. I just get anxious to see Max. And can't wait til the school starts to go out there to see him and work with him. I haven't heard anything yet.

Take care,
Lisa

Friday, April 18, 2003 7:09 PM CDT

Hello,

Kinda been gloomy days huh? I Sure do feel the gloom. If I spend any time home alone, I start to miss Max alot. And at work too.

So, I went out to see him today and we'll all go out there Sunday for Easter being we have no plans.

Guess Max has had a some stiff days (his arms and legs being stiff). Don't know if it's the weather or just him not wanting to play with the nurses or what? Jim and Spencer went out to see him on Wednesday and Jim said he looked real good and was relaxed and looking around and talking his talk with him :o)

I went out today and he looked alittle crabby. Guess he didn't eat breakfast and had to tube feed him (they had to tube feed him at supper one other day too and has been getting some upset in the even but, relaxes after tylenol and maalox) but, anyways, he didn't seem to eat lunch to well either when I was there. His tummy was just a girggling away so, maybe he has an upset tummy going on.

I met his new house buddy. Cute kid. But, I can't say really anything about him cuz of the privacy thing (not that I know really anything anyways but his name). What I can say is I had a 14 mile cry all the way home with no kleenex in the car. Seeing this other child made me wish Max could be like him and respond the way he does and sing songs, eat finger food himself. I don't know why I got so teary eyed (ok, I cried my eye's out). Guess I was due for a good cry. I can't compare this child to Max, it's like what they say, comparing oranges to apples. The only comparision is that the parents suffer such pain. I'll keep Max's new house buddy and his family in my prayers. He is one cute kid :o) And I have a feeling he'll have lots of good progress to come.

So, I'm feeling Max's absence more now then before. I know Jim is being he was at home alone with him every evening and has to feel that "what do I do with myself without Max here". Spencer, well, he still doesn't like to be told to do his homework LOL. Guess he's feeling the absence of Max too now that Jim has more time to hound him about his homework LOL.

Of course when I got home I had to call Joanne right away to have my talk to feel better. Couldn't get a hold of her so I called Jim. We talked. I felt better. Then Joanne called me and we talked and we cried together. The old Max will always be sooooo missed. No matter where we are, whatever we're doing, how old we get, we'll always have that "BIGGER" boy in our hearts and holding on tight to the new "BIGGER" Max with lots of love and kisses.

I hope everyone has a good Easter. Sorry my feelings had to come out during a holiday weekend. Definitly wasn't my plan LOL.

Lisa

Monday, April 14, 2003 8:36 AM CDT

HI,

Thought I'd do a quick update being I have the day off unexpectedly due to a flat tire ( I was to work at bed and bone today). Neighbor lady drove by and told which was nice of her cuz I probably would have just jumped in in a rush and not even noticed LOL. So, I have nicest day of the week off to get some stuff done around here :o)

We had a really good day yesterday with Max. We took him out to eat with the family at old country buffet and Max did really well compared to last year. He was very alert and looking around. He didn't seem to seize much either. Just sat and looked around. He didn't eat to much but, then it was kinda hard being I didn't have a blender to puree his food LOL. We then brought him home to relax and have a nice whirlpool. I did get teary eyed when I laid him on the couch and talked with him. The house felt whole again with all of us together. There's no doubt an empty feeling in the house without Max here and any empty feeling in our hearts but that emptyness has always been there since his accident. Jim said that lately he's been having flash backs of Max before his accident and dreams of him often lately. Spencer has been moody with ups and very fast downs. So, we are feeling the loneliness of Max's presence not being here but know he's in good hands out at Sugar Lake and not far from us to go out and love him up, bring him home for the day or whatever we need to fill in that loneliness for him.

I held him in the rocker for awhile. He started to fall asleep during his whirlpool and then perked up some being the bubbles where hitting him in the face LOL. Then I gave him a little rub down with some lotion. He was getting a little stiff and seizing quite a bit about the time we were to bring him back to Sugar Lake.

He slept well though last night I guess. Got stiff and upset alittle around 10pm but, they gave him his tylenol and Maalox and he went back to sleep for the rest of the night.

Spencer had fun playing with Dana and Joey (Jodee and Mikes children out at Sugar Lake). They were playing baseball and Spencer was hitting the balls really well. First time I've seen him hit so good. He was feeling pretty proud and of course Dana and Joey were cheery him on on how well he hits :o) Their such wonderful kids. They go over to see Max and play with him and for Spencer to have friends to hang with when we're hanging with Max is so GREAT. I just can't say enough of how wonderful this is all turning out to be for everyone. They had Max outside for a little camp fire on Sat. night.

Max had Grandma Joanne and Grandpa Ralph visit them this last Saturday and also Max's home nurse that works out at Sugar Lake also, brought her girls out to visit Max too.

From what I hear, Max may also have a house friend coming soon too. Excited to have him have a little buddy to hang with in that big house :o)

I suppose I should go and start my day.

Take care and enjoy the beautiful Monday while it lasts.

Lisa

Friday, April 11, 2003 7:38 AM CDT

Good Morning,

Sounds like we'll be having some nice weather to stay. From what Jim heard we are going to have 80 on Mondday. :o)

I have to pick up Max today so that we can go to St. Paul and have his pump turned down again. Like I said in the quick update, he is doing really well. He's getting feed all three meals orally, doing therapy stuff during the day and in the late afternoon and evening. I think maybe this is why he's sleeping good. I can't say enough how much Sugar Lake is a blessing. I never in the world thought I would feel this good about him moving out there. I'm actually surprised at myself LOL. Maybe it hasn't sunk in yet, I don't know or maybe I'm just been so busy with my other job and then coming home for a hour or so and then going again to my regular job.

I was out to Sugar Lake to see Max and for a meeting with the school teachers. These guys I think are going to be GREAT. The vision teacher explained to me about Max's eye site. I then looked some things up on the web.

Max is not cordically blind, he's cordically visually impaired. Ok, after going back rereading the website the diff between CVI and Cordical blindness is also the amount of damage to the brain and where the onset of the damage is so, there can be cordically blindness but, I really think that Max knows more then we know he does and the Dr.s always said he can see but, not process. They never said he couldn't learn to process what he's seeing and that he does remember things before his accident so, if we show him something like a cup or something he liked before his accident (FISH LOL) he should beable to remember or relearn what that is he's looking at. I'm still very anxious to see what will happen and see if Max shows any physical signs of recoginzing something. And if he doesn't I just know he does know somethings. You can see it in his eyes :o)

She showed me a pic of the eye and where he looses this process. She then said that if we take an object, toy or whatever (she used a cup for an example) and shake the cup just off to the side of his vision and then bring it in front of his vision that he would beable to eventually track this cup and recognize it. Til finally you place the cup in front of him and he'll know immediatly what it is. It's something you have to do over and over and use the same object. BUT, she said if you set that cup in front of him and he recognizes it, you throw a spoon in the cup, he looses his thought process on that being a cup and now he doesn't recognize it anymore. Weird huh? I was wondering how they know this and as I was going through the websites, I guess you can have this kinds of vision problem without necessarily having other physical problems. So they could communicate to the one doing this practice on them. Does that make sense.

And all this time I thought that black and white things were best for Max to look at and here she said florescent colors are the best (Says that in the websites also) Guess I didn't do my homework in this area very well now did I. There's not to much on the web about this type of vision problem. They are almost all the same.

"OH" and Max had that really loose tooth in the front. And we and everyone at Sugar Lake was watching it real close for fear he would swallow and choke on it. Well, our litte trooper boy apparently spit it out at night while in bed (a few days ago). His home nurse that works out there didn't realize it was gone til after breakfast and was kinda panicking that he had swallowed it while she was feeding him and I said well maybe it's in his bed. And sure enough it was laying on top of his pillow (no one saw it there) Just laying there plan as day. So, we figured he had to have spit it out cuz if he'd had choked and coughed it out the night nurse would have heard this going on and go to check on him. So, we're really proud of him for knowing to do this :o)

We're going out to eat with Grandma Karen and Grandpa Jerry for a yearly Palm Sunday pig out at old country buffet this Sunday. We're picking Max up on Sunday so he can come with. Hopefully he'll do better this year then last year. There's such a long wait to get in and I think Max got over stimulated and just couldn't handle it and postured up a strom til he fell asleep in my arms. Then after we go out to eat, we're going to bring Max home for a nice whirlpool bath.

We're also bring him home on the 27th to spend the night. His one day over night that he has to do being he's on respite care and not permanent placement.

I think until school is out and I do all of my 2 jobs in the evening and have the days off, I won't get Max back home much until then. I'm trying to work my butt off at Bed and Bone, which by the way I should say is a Really FUN place to work at. The staff is great and Madree, the owner, is sooo nice. She sure knows her dogs and how to care for them. It's nice working with people again and not just by myself all alone. I really enjoy it out there. AND THE DOGS, Man there are so many different kinds and they are so beautiful, even the scruffy ones have there own personalities that make them just so cute.

Well, I should go and get ready and get Spencer off to school. I think he's coming down with a cold and will have to check on him when I get back from taking Max. I may have to pull him from school.

So, thanks for all your prayers for Max's and us while going through the new changes. They obviously helped cuz I really think things are going well and can only get better for him. I'm hoping the change will bring Max out in some way that we could never do at home. Gol, I'm just really really feeling good :o) (of course this nice weather helps alot too)

God Bless and I will let you know more the school stuff and how that goes. Just need to get Max to perk up some to start to learn his new things. Prayers for progress in learning will sure come in handy if you don't mind :o)

Lisa, Jim, Spencer, Max (ps, have pics of his place in the photos)

Thursday, April 10, 2003 8:05 AM CDT

Hi,

Just a quick note to say I'll be updating soon. Hopefully today when I get home from my dog job.

Max is doing really well out at Sugar Lake. I think they really poop him out out there with all the therapies he does out there from morning to night :o) He looks good and maybe even has gain his weight back and then some.

I'm excited about the school teachers out there. We met yesterday and I'll have to tell ya more about that too.

We have an appt tomorrow for his pump to go down again and he's doing so well at night that I think it will be ok to start turning it down at night also.

Ok, have to run and get Spencer off to school.

I'll be back soon with a better update :o)

Lisa

Friday, April 4, 2003 8:47 AM CST

Good Morning,

I've been unable to update being this week has been soooo busy.

Today is the day Maxie moves out to Sugar Lake and between yesterday and today, the butterflies are just massive in my stomach. I'm been really to busy and to tired to have my crying fits at this time so I'm afraid when the moving is all over and his room is all set up out there, that I'm going to have uncontrolable tears. I've told a few family members that I'll need lots of company this weekend for support and to keep me busy with lots of laughs.

Max has had a terrible week in the evenings this last week. He's been so upset at night and he did have a couple days where we thought he had some kind of flu. We took him to the Dr. for test and they came back all fine. He's was much better last night and fell asleep pretty good. But, he just kicks his legs and moves his arms all over the place and looks mad. I know he goes through this spell from time to time. One week he'll be really upset and then the next for a few weeks fine. He's been really good during the day time though.

We had his pump turned down last week again and he's just one microgram per an hour aways from not being able to turn it down anymore. THis is just for the day time. He's still up there quite a ways in the eve but, they said that they can split the times up 3 ways and we can lower it late/earlier in the morning and keep it up just at those times he's upset. I think that if Max is going to be upset and gets as upset as he does, that the pump really isn't doing anything to help that. The only way to find out is to have it turned down and prayer that his upsetness doesn't get worse.

We had his throat exrayed on Wed. to see if he had any blockage for airway (cuz of that snorting sound) but, all that is fine. We figured (along time ago) that this snorting is half his way of communicating and or just his tongue posturing and that he's trying to maybe move it but, the only way his brain lets him is to be pushed up to the top of mouth and there ya go the snorting sound.

I'm alittle shaky here trying to type, Nerves I guess. I guess I have to just keep thinking how this will be all alright for all of us and that (like Joanne says) that I'm just a different kind of mom for Max and that to show my love for him and to care for him is to make sure that he gets the best of care from others and that if I can't comfort him with just a kiss or a hug or a bandaid, that I have to give him medicine. I told Max that with him moving out there that I Now can be a mom to him and not all those other hats that I have to wear throught the day. Oh I'll still do the other hats cuz I need to know where Max is but, it won't be all the time so that I can just relax and be his mom. I won't have to worry so much about not getting his therapies in cuz of others things needed to be done or whatever.

Guess I'm rambling and really not making much sense. Got so much in my head right now that it's just spilling out my ears. LOL

I met with the school therapists out at Sugar Lake the other day. I'm REALLY EXCITED ABOUT THEM. They sound wonderful and one lady really caught my attention when she talked about Max's sight and some other things. She sounded excited and said she's excited to work with him and that she can tell me a few things as to why his tracking isn't going well right now and that she has idea's for him.

We plan on having a some kind of "House warming party" for Max out there. So, I'll keep you posted on that and when it could possible be.

Like I said before, The place is beautiful, the nurses are GREAT, I'm very comfortable with him being out there and know that he will get the best of the best care and lots of love. I don't have any probs with that. It's just him not being here. May have lots of home day visits. It'll take time to get a routine down for everyone and me.

They may be getting another little boy out there soon also so, that's exciting.

I have pics but, just have to develope them after the roll is done and get them up.

Well, I should go. If you could please send lots of prayers our way, that would be much appreciated. Not just for us but, for the nurses and Mike and Jodi and their family. I know some of you have emailed me and sorry I haven't had time to reply back at this time. I will soon :o)

Thanks again for all the love and support that you've given us in the last couple years. We are on a road of new adventures to come and my journals will be filled (I hope) with lots of new and exciting things.

GOD BLESS,
Lisa, Jim, Spencer, Max

Wednesday, March 26, 2003 10:21 AM CST

Good Morning,

Looks like the last nice day for awhile. Back to the icky colder and rain/snow possibly. Of course just in time for us to pick Max up from Respite on that day.

We pick him up on Friday and then go to an appt to have his pump turned down again. He's doing well with this (I'll knock on wood when I write these things so I don't bother you with the typing of it LOL)

Next week will be busy. I have an appt with the school therapists, and Max is going to have that throat xray/endoscopy done that this sleep study Dr. wanted awhile back. I don't think that we'll find any probs (the sleep study was fine without him having any trouble with his breathing at night). But, we are curious to see how his throat looks after having that lazer surgery done a year or so ago before getting his trach out. And I'm wondering if they can see if he has been having lots of relux in the way of seeing if his throat has any damage from possible reflux and the acid and all or maybe it doesn't get that high up or something. I don't know. Just thinking off the top of my head (naturally, I don't use my brain, just he top of my head).

I went to visit Max yesterday and he's doing fine. He's been doing really well and not sleeping to bad out there. SOunds like he's sleeping better out there then at home. The room in the respite house is a neat blue so, maybe that is calming to him. I wish the other house had different color walls in the bedroom. I'm thinking I may have to tone down the decorating in his bedroom out there cuz Maybe it is to stimulating here at home with all the stuff hanging and what not.

They do have these big like boxes or tents that are filled with stimulating things to look at and make sounds. It would be cool to make something like that for him and have him sit or lay in there during the day time when it's time for that kind of play.

I'm trying to adjust to Max being gone during the week. It's weird feeling. I'm at work and I would call home to see how things are going and had that feeling of needing to call (I do anyways just to say hi to Jim and Spencer). I'm also feeling that Max is just so out of the loop with our family cuz he's not here to listen to us talk about our day and what plans we may have coming up. When I go to visit, I have to tell him all that has been going on and then I feel bad that he's not home with us. Kinda like, here we are going on with our life and there he is way over there having a different life. Ok, I know it's a good life for him and the nurses are WONDERFUL. But, you know...........

I guess once I get into a routine with him when he's out there and when it gets nice out, we'll see him more then I'm imagining and know that he'll be in our lives more then what it feels like now.

Spencer had a bad night the other day. He was crying and all upset saying he doesn't have a normal life (wants his own chores LOL) and other things and he said that since Max's accident he doesn't know how to be a big brother anymore. He would like an older brother (no way of Jim and I working that one out LOL). So, I'm trying to keep him busy this week of spring break with seeing his friends and doing things.

Last weekend he got to play with one of our friends 19 month old son. Spencer makes a very good babysitter and would like to do that when he gets old enough. He said he knows what it feels like to be a parent and worries about Trevor falling or getting hurt. I guess we're all alittle more extra catious now when it comes to little kids. Trevor is coming over to play with us today for alittle while.

Last weekend Spencer got to hang out with his cousins and their friends. So, he got a some of the "older brother" and "older sisters" (lots of girls there too LOL) feeling I bet hanging with them.

So with all that, we've been busy and will be the next few weeks I imagine with Max moving and all. My tear ducts are filling up and ready to roll next week. I know there'll be no stopping them.

Prayers are being said constantly here for the those invloved in the war and their families. Whenever I watch some of it on the news, my heart just sinks. Having you loved ones over there fighting and living this fear day in and day out must be so hard. Where do you find the strength and comfort to go one with your every day life.

Well, I have an hour and a half to get ready for the little one and find all the little peices of junk that maybe laying around the floor and house. It's obviously been awhile since we've had young ones here.

I have b-day pics up and will take some of Max's new house when I pick him up on Friday and post them sometime over the weekend.

Oh, my new part time job. Haven't started yet. Start on Monday. I'll let ya know how that goes next time. I think it will be nice to work with people again (always alone with my own thoughts when cleaning at my other job) and taking care of some really neat looking dogs should be fun. I would really like to have a dog. Not possible here where we live. I don't care for little dogs. The bigger the better are the ones I like.

Take Care,
Lisa

Wednesday, March 19, 2003 8:31 PM CST

Gosh, I feel like a terrible Mommy, I forgot to mention that Max's birthday is coming up and here it is "TOMORROW".

We usually have Jereimiah's and Ezra's and Max's party all together but,haven't been able to get one together and that is what I was waiting for. Also forgot to say Happy b-day to Jeremiah on the 8th.


So, I guess I just wanted to make a quick update to say

HAPPY BIRTHDAY TO JEREMIAH (19) AND MAX (6) AND EZRA (16)!!!!!!!



(I did update on the 15th so those who haven't read that yet can go back and read that one)

Lisa

Saturday, March 15, 2003 10:37 AM CST

Well Hello again, This is like the 3rd time I have attempted to update. Sorry it's taken me so long.

I'm trying to peice all together in my head as to where to start. It seems like we've had such a busy month but, yet not really LOL.

Max was really upset last night (one of my attempts to update) and I don't know why. He just wouldn't settle down and was keeping his body stiff almost all evening til he must've pooped himself out. I can only do so much when he gets like that. I try to move him here and there, TV on, TV off, music, lights.

We had his pump turned down again yesterday but, just during the day. He was stiff once yesterday but, think he was trying to do some business if ya know what I mean. Couldn't set him on his toilet though cuz he wouldn't bend at the waist.

His siezures are still about the same. They seem better at times and other times they seem to never end.

Max went to Sugar Lake last weekend for a visit and to start getting him used to being out there and meet the nurses (oh that's right it was for me to get used to him being out there :o( )

He did really well (except for his crabbiness that he does every night). We had told Jodi and Mike to expect Max to start getting stiff and snorty (that sound he makes) at about 8:30 pm. Seems to be right at that time and sure enough he did for them. They had to laugh at how right on the nose we were with this.

So, I met one of the nurses that will help take care of Max and she seems really wonderful and understanding. There is another one who works over there that had worked with Max here at home a while back so, we know her and she too is very nice. In fact we would run into her sometimes around town and she's come up to us and say hi and ask how Max is.

Of course Max's home nurse will be out there also to care for him.

It looks like April 5th will be the day he moves. He has one more week of respite out there at the end of the month here. This actually will be called respite for Max and not permanent placement. That sounds way better for me anyways LOL. He will have to come home for 1 day out of 30 but, we plan on him coming home more then that anyways. I guess like we've said, being so close he can just come home to hang for the day and then go back.

Yeah know I was thinking last night how Max always liked to go places and never liked coming home. When we would pull into the driveway he would just cry out "NO, NOT HOME" "I DON'T WANT TO GO HOME". He was the little social butterfly.

I also bought some sunflower seeds (out of the shell). I haven't bought them in so long and put them in the cupboard and had a flash back to when Max would climb up on the counter and get at the sunflower seeds, bacon bit, crutons, and noodles. He loves all of them and you could tell he was there by the mess on the floor when he was done.

Anyways, We looked at the the new place where Max will live and it is just beautiful. I'll have to take pictures and so them to all of you. I actually like both the respite house and the new place. I could live there in either one of the houses :o) I keep telling Max he's going to be living our dreams by living on the lake and having a swimming pool. I guess if we can't have that, at least we have the oppertunity to let one of our kids have the dream LOL.

I'm feeling much better about Max moving out there. I've gotten lots of wonderful support from so many of you with emails, or phone calls. This makes Jim feel more comfortable also when I'm more relaxed about it.

The nurses just love Max and their dog too. I have a pic of their dog with Max. It's kinda dark but, will try to put it on the web.

Speaking of dogs.....I got another job at the "Bed and Bones" the other day. Ok, stop laughing. I know it sounds like a job I shouldn't be doing. It's a bed and breakfast for dogs and it's really neat.

I'll have to write about that in my next update. I should get going and start getting Max up and going. He's watched enough TV.

Just wanted to let everyone know how great Max's new place is and I'm excited to show you pics of it and that we are feeling good about the move and Jodi and Mike are very understanding to my feelings so, I know Max will get the best of the best with his cares. Especially being the first out there. He'll get very spoiled.

My father in law had some health problems last week and was in the hosp but, is home now doing better. So, we are thankful for that.

WE LOVE YOU GRANDPA JERRY AND GRANDMA KAREN.

Ok, I should go and I'll try to get the pic up later today of Max and...........oh shoot forgot the dogs name that's out at sugar lake. THey had two alike and one passed on so, don't know if that was Goldie or this one is. Oh well, I guess I'll get it right once I'm out there more.

Thanks agins for the wonderful support at this time when we are so torn up about Max's move but, yet know it will be a good thing. Your love and prayers are felt and are very comforting to us.

Lisa

Wednesday, March 5, 2003 7:29 AM CST

Good Morning,

Sorry I haven't updated in awhile. I just couldn't go through what I felt all last week. I had such a terrible emotional week. The thought that Max was going to move last weekend just torn me apart and I cried for 3 days straight and couldn't sleep and barly functioned. Tuesday of last week I just held Max and cried (and then we watched "Legend of the Fall" which made me cry even more. Stupid movie. Like I didn't have enough to cry about in my own life much less cry over fictional(?) stuff LOL)

Anyways, I was trying to figure out how I could get through this move for Max and almost backed out all together.

We had a meeting with the county people and Jody and Mike last Wednesday. First we were told that the financing for all this wasn't ready yet. Then we talked with Jody and Mike more and I have to admitt the more I see Them and talk with them, the better I feel about Max moving there.

We are looking at April 1st now for Max to move and we are going to do some respite this month to kinda wean me slowly so, I get used to Max being gone.

You just can't imagine what has been going through my mind. And this choice will never be easy to do whether Max is 6 or 16. I know this.

I know this isn't what we had planned for Max so soon and he's still so little to me (But, I guess he will always be 3 1/2 years old to me no matter what).

But, I tried to weight out the pro's and con's of all this and that was just to much to do cuz there seems to be so many reasons for each to stay or go.

Max's nurse here at home has been hired out there so, if I did keep Max at home she still had planned to go work out there (so, I lost my nurse here at home and they are very hard to find, the good ones that is) and she has been here since day one with Max and knows him as well as we do.

The people I talk with on the "PONDS" (parents of near drowns) just had a whole topic about siblings and how lots of them have, are having a hard time with their brother or sister's accident. Which brought me to thinking about Spencer again. Sure Spencer says he's fine and the school psycologist(sp?) said he say no red flags when he's seen him. But, what kind of long term effect will this have on Spencer down the road. Will he feel his childhood was kinda pushed aside cuz of all the attention Max needs? Well, he resent anyone of us, including Max, in anyway? They say action's speak louder then words. I fear for the day when he may act out in some way instead of talking about it. He doesn't talk much about Max unless we bring it up and I did the other night and Spencer did admitt he felt alittle pushed aside. There are little things we've noticed about Spencer but, if it's related to Max's accident or just a typical boy who knows.

Oh, I could go on and on about my diffent feelings and then of course Jim has his feelings to deal with but, yet he's having a hard time deciding if he should let me decide all this on my own. He's worried more about me then Max I guess and if I can't handle this, he says he can't handle me being so miserable. Jim has been so wonderful through all this as far as supporting me and not blaming me for Max's accident. He's been very unselfish. He's put his feelings aside most of the time to make sure I'm doing ok. We've had our long talks and cries together. We've always agreed on the things Max needs whether being some type of surgery or his pump upped or downed. I know there are times when I don't show it or say it but, I do love him dearly and he's definatly been a GOD send to me when I met him (along with his family).

So, I guess all in all we have to go ahead and give this a try. If only you could spend a day here, you would know what it's like and how hectic it can get. And trying to divide your time up between all of us is very hard and then going to work and trying to keep the place looking half way decent. I find myself getting depressed at the drop of hat now a days. I feel so out of controll of everything in my life.

I have to see if this will give me the quality time I need to spend with Max and Spencer and Jim and myself.

I know it will take time for the nurses to learn Max out there and do what I feel is best for him and like I said before Jody and Mike are trying to make this as easy as possible for me and letting me know I need to do what is best for Max and me. They really are concern about my wellfair and Max's and have given me their trust that Max will be taken care of very well and that they will love him up. They plan on doing lots with the kids there and don't plan on just letting them lay around. The assured me (that's the word I was looking for :o) this is going to be more then just a place to live but, a place to keep the kids going and to help them to improve in any way they can.


So, this week has been pretty good. Max has been getting upset at night again. He seems to go through this off and on. He has a week of calmness and then a week of stiff and ridgeness before bed.

We've turned his pump down again (day time) and this seems to be going well and will turn it down again next week.

He's going to Jody's and Mike's this weekend and Jody is coming to day to video tape Max's cares again to let the nurse look at it when time to care for him out there.

I'm feeling some what better but, I know when that time gets close again I will be one big blubber tear (spencer was so glad when I said last week that I was done crying he even said so then I warned him the tears will come agian LOL)

I have more to write in my next journal about some other things such as Max's being adopted from that website. If you see a lady named Martha who signs Max's guestbook, she's the one who adopted Max and we've emailed back a few times. She sounds like a wonderful person who spreads caring words and her love to lots of kids (cancer).

I also would like to ask that you take time to say a special prayer to my mother in law, Karen, and her sister, who lost their mother last week to cancer. It was rather quick and left them feeling...well, quite alot of mix feelings being this happened so fast. But, they did get down to see their mom before she passed on and Karen said that they had a nice time with her.

Thanks for letting me babble on about my feelings. You all are my own private therapy group and I hope that you don't mind when I type down my thoughts and feelings. I do feel better when I type them out hey, I didn't even cry this time, almost but.....

Thanks again for keeping us in your thoughts and prayers, much needed once again,

Lisa, Jim, Spencer, Maxwell

Friday, February 21, 2003 8:58 PM CST

Hi,

Jim is bugging me wishing he could update LOL. Jim is a one finger typer so that will never happen. :o)

I have some new pics (actually old ones) they are of the cousins at Christmas in 1999 (with one extra, little girl named Riley) and then there's a 2002 March b-day party of all the cousins (minus the girl, Riley). But, it's cool to see how the kids have grown up so fast in just 3 years. Then there is one of Jessie and Spencer last year in their Aunt Lauries hot tub in the winter. I haven't taken any new pics lately so thought I would throw some old ones in. There always fun to look at.

It's been a mellow week. We had Max's VNS turned up and his pump turned down. So, far all is well (knock on wood. I think I should where a peice of wood around my neck LOL).

I plan on turning his pump down again this next week. He's still up there for the night time but, real low for the day so, this is good.

The VNS will stay at this 1.50 millamps for about 10 weeks to see if he response to it at this setting. If not then we go up again. IF he does and his seizures are better, then we can maybe lower his meds. Or at least try.

But, he's been still eating good, his sleeping has been good the last couple days (BIG KNOCK ON WOOD).

He seems more alert and looking more directly at things when you ask him to. Talking some more with his cooing.

I had him on the floor the other day and his one foot/leg was on top of the other foot bending it down (which he doesn't care for cuz when we do his exercises on his ankles he stiffens his foot up) anyways, Max was trying so hard to move that foot/leg off his other one. You could see he was trying to pick his leg up and his arm was just a going up and down also. I encouraged him on to pick his leg up and move it but, he started to get so fustrated that I had to help him.

It was fun to see that he was trying and knew that he was trying. It's just to bad that for him to try to move it has to be an uncomfortable feeling some where first.

As far as Max moving, well, there's still some meeting to attend and paper work to fill out. I was crying up a storm again last night just thinking about it. Feelings of loosing my baby and not having much control in his life of caring for. But, I have to try my best to see how it goes and not let my feelings get (to much) in the way. I at times think this is not right but, then I think it is for many reasons.

Well, That's a mom for ya. Always thinking and maybe to much LOL. I guess I just hate to make any big changes with Max when I'm turning his pump down (that's one reason for not LOL) I can come up with millions for and against.

OK, enough of that.

I don't have much more to say I guess. We are looking into new beds for Max. I guess the ins. bought this old rickity hosp bed for Max when he came home (we thought maybe it was just rented) and we would like something more comfy and home like. We think we found one at the Mattress Factory (or something like that) in Plymouth. It does all that a hosp bed does (except go up and down) but, this even vibrates, Which would be good for stimulation for Max.

Well, I should go check on Max and think about getting him to bed (in the ol rickity bed LOL). He's been looking at a stuffed Scooby Doo long enough I think and should be bored with it by now. I tried to get him to turn his head and watch cartoons but, his head seems to like to go to the left.

Hope everyone got a chance to enjoy the nice weather we had the other day. Wish it would stay though.

Lisa

Friday, February 14, 2003 7:29 PM CST

HAPPY B-LATED VALENTINES DAY,

I've been meaning to update but, the time just ran away from me.

It seems like it's been a busy week but, yet I haven't done much.

Max has been having lots of seizures but, he still has kind of a chest cold. Just when you think it's gone it comes back and this time with seizures.

I had his pump turned down this last week and he's doing good with that and his VNS was turned up with no results yet really. One more time with turning that up and then she (the Dr.) will let him sit there for 2-3 months (the VNS setting that is, not Max LOL)

I guess Max had to cough tonight during supper (I was at work of course so, I missed this) but, from what Jim and Kristin said, Max knew he had food in his mouth and spit it out so that he could continue to cough. They swear it was purposeful and that he shoved the food out with his tongue.

I came over to him after work and asked him to turn his head to look at me and he really tried. His eyes looked my way and his head moved some but didn't quite make it all the way. I think if I can get his pump down enough that it will make a big diff plus if that VNS works we would really see a difference in his abilities.

Tomorrow we have 2 nurses working, Kristin and Grandma so, we have the whole day to play. First we're going out to lake Minnetonka where a friend is having his yearly feast out on the lake. Ok, I'm not keen on being on the lakes, especially this year. I never was comfortable on lakes in the winter but, I must move on and not be so scared and think of the others. But, you can bet I have one eye always looking out for...ANYTHING AND EVERYONE LOL

Hey, did ya notice the dancing Snoopy in Max's journal. Well, it kinda long story on how I met Chris. It started with Dylan, who've I've mentioned a few journals ago and Chris has a website for her son who has lymphocyctic leukemia pre-B cell.

(website is caringbridge.org/page/gooch)

Chris has offered to personalize Max's website but, I haven't gotten around to asking her what I would like. IT's so hard to talk per email.

So, there's this other website (if your read Chris's guestbook entry) that is called www.chubbychica.com and they have a caringbridge link that has a list of kids who anyone can adopt and just keep up on how the child is doing and to write every now and then to give support and prayers to the family. Amie (the lady who has this site) has added Max to the list of kids up for adoption.

Is this so cool or what. If you look at their websites you'll see how much they do for others (Dylans site also). I wish I could add more links to Max's site. I know it's much easier to just click on them. But if you have time please look at them.

There's also been sad news in our lives. Our nephew lost a friend to a heart defect last week. Something that there was no warning signs or anything. He was pretty upset so, I ask for prayers for him (Andrew) and his friends family (Zach).

Also a lady who I know from the bank where I clean, lost her son in NY. Just trying to make some extra money cab driving and 3 people killed him. It was like the pain I felt the day Max had his accident was coming all back again when I talked with her. I just know what she is going through (but yet not, being that someone else has done this to her, her son) I pray that she can find peace again somewhere in her heart and find that smile and laughter that she has shared with her family and so many of her friends and customers at work. I ask also that you take just a few minutes to say a prayer for her. Her name is Jan and she is always such a upbeat person (if you heard laughter coming from behind the teller station, you pretty much knew Jan is working :o) and she has always taken the time out from work to ask about Max and to listen to me babble on about him.

Well, I think my 45 minutes is coming up so, If I want this to take I better go.

Thanks for the support for us and helping me support the other kids/family/friends.

God Bless,
Lisa

Sunday, February 9, 2003 12:01 AM CST

Hello to all,

I thought I should update being it's Sunday and it's our lazy day. I do have to go to work for awhile. We haven't had an all day nurse since Wednesday (long story) and won't have one til next Wed. or Thurs. So, I've been busy trying to do it all for Max. Oh this is why I have to work. I didn't get all my jobs done on Friday. But, I guess I never really do LOL.

I jinked poor little Maxie when I last wrote about how he's been so healthy with no colds or anything. Last Tuesday he woke with a nasty chest cold. I think today he's starting to feel better. I don't hear the rattling in his chest anymore and he's been snorting (that noise he makes) up a storm again. Gramma came and watched him a couple times for me cuz I had an appt on Friday and she had her Thurs when she works. She likes to hold Maxie on the rocker and he usually tinkles on her lap through his diaper so this time I put a blanket on her lap before holding him and now this time with his cold he coughed up on her all over her shirt. We had to laugh cuz we didn't realize he would be messing her up from the other end. LOL

Max can't blow his nose(not from lack of trying on my part mind you LOL) so I think he sucks it all in (not to be gross but) this is a good thing in a sense cuz his nose stays clear so he can breath. We do alot of suctioning and make him cough so that we can help get all the crud out for him.

Spencer had the same cold. Not real stuffy just all in the chest.

So Max hasn't really done much this week. We just tried to keep things moving for him so he wouldn't get pneumonia (sp?). He wasn't to happy with being moved around and put in the stander and all. I think he just wanted to lay around.

Well I haven't talked about Max and his big move to Sugar Lake much cuz I guess I'm trying to avoid it and hope the time won't come soon. But it looks like it could be as soon as March 1-2. I think once he's moved and after time I will accept it better but, when I think of the move and all the explaining of what I do with him (and Kristin) and when and how to do it and if this doesn't work try this and all that stuff, we really do alot with him. And it's all just a matter of what's he like at that day and time.

Of course then there's the guilt I feel of not being able to care for him myself in our house. That is of course not the case and I know better to think and feel like that. We are only doing this cuz it's an oppertunity to have him close to us and we know that Jodi and her family and the nurses she's hired (lots of them are her friends) are very, very good with kids like Max and will love him up and take good care of him. Like I've said before, they only have 4 beds with only 2 private rooms so, the chance of a room being open in the coming future may be tough to get.

We just want whats best for all of us and are trying so hard to be just your average joe family (with no disrespect for any Joe's out there LOL). But, as you all know from reading Max's journal, it's just hard to do what other families do on an every day basis. I know some may not understand what I mean but, I wouldn't expect anyone to really understand. Heck, we never realized what families go through with disabled kids. It's a whole different kind of world that's for sure.

I suppose I should go. I thought I had more to say then this but, can't think of what. We have an appt this wed for Max's pump to be filled and his VNS to be upped again. We started to wean him off his seizure med just to see what would happen. Funny how when Max is sick he doesn't seize much but, is more stiff. They say when a child is sick that the seizures would probably come more. Max always goes against the usually :o) I'm going to try and down his pump during the day and see how he does. He seems so loose and doens't posture unless he has a reason.

Oh, And we want to wish Uncle Scott a "HAPPY BIRTHDAY". We love you so very much. You're always there for us when ever we need you whether the computer screws up or cars or just to talk and we've had lots of laughs too. Brush up on our dart playing maybe you'll win for once LOL.

Love,
Lisa, Jim, Spencer and Maxie

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