History

Monday, July 12, 2010 12:09 AM CDT

Hello,

Once again Max did fantastic through surgery and is doing well with just the rods in his legs holding his break together.

So "knock on wood" no body cast. He'll be discharged Tues. We are going down to see him today if we get our butt's moving HA HA.

He is in some pain when moved but that's to be expected.

Max also had lots of gunk in the lower part of his lungs after they were taking the breathing tube out of him. THey said that it had settled in there over time and that it would be impossible for the nurses to suction it out and or Max to cough it up.

They were able to get it out but stress how important it is that Max is kept moving as much as possible (which his neuro had said when Max was turning blue in his legs.) And that we should see a puminologist and possible get a cpap for night time sleeping or whenever that kids sleeps. Seems like he's sleeping all the time but maybe now with his lungs cleaned out he won't be so tired.

Max doesn't do deep breathing and is a shallow breather so he needs help to get his lungs to work full capacity.

So, my vacation ends after today and tomorrow will be a busy one with getting him back to sugar lake and then me running off to work (hopefully in time)

Max will get some much needed tweeking for his therapies and meds so that this hopefully won't happen again.

It sad to say that sometimes it take this kind of accident to get updated on what Max needs and to get the nurses at Sugar lake to know the importance of moving, moving,moving Max.

Well, I should get in the shower and getting going.

Thanks for visiting and keeping Max in your prayers. I know I don't update much like I had said. But know that if it wasn't for the support of our family and friends we'd be so lost.

Lisa, Jim, Spencer, Maxwell

Friday, July 9, 2010 0:07 AM CDT

Hello after a long time of now updating.

Seems facebook has taken over my life of what's what going on with our family.

I haven't even paid much attention as to if anyone visits Max's site anymore as far as numbers goes.

I so apologize for not updating more faithfully as in the past.

But we've had changes in our lives where Spencer has needed more attention and Max not so much (as I think I have mentioned before) and this is an on going thing at this time.

We have found that Spencer has been bothered by Max's accident more then we realized even though he had been seen by school therapist or whatever you call them at the time of accident.

Anyways, he's also got more things going on in his life that keeps us busy with him having a girlfriend and wanting to do more things. He's applied for jobs but hasn't been called back. I think he got his apps in to late.

But the real reason I'm also updating for is cuz Max has broken his femur bone on his right leg today. Jim and I just happened to be off from work for a little vacation weekend. Guess we'll be spending most of it at Gillette.

They're not going to fix it tonight and tomorrow morning they will try a couple of knitting needle like pins to see if they will hold.

Max's bones are so thin that using any kind of metal would most likly shatter through his bones. If those needles don't work and the Dr. thinks the smaller one just to test his bone thickness (thinness) will tell her for sure.

Or it would be a body cast to keep him all together and not let the other leg possible break with having only one leg in a cast cuz of weight and moving him around.

But if the needles do work they'll keep him at the hosp. to make sure they don't move within his bones. If so body cast would be last option.

I need to go to bed soon so I'll end here. I could go on and on about the many emotions that I'm going through.

Oh, I should mention that his break happened when the nurses where doing his routine therapy.

You try to do the right thing but..... I blame myself for not thinking outside the box knowing Max has changed his range of motion probably should too.

Oh there's so much more in my head but need try and eat and go veg on some stupid tv and get out of my life for awhile.

I'll update more after we know what for sure is going to be done with Max

Lisa

Friday, March 19, 2010 8:18 AM CDT

Morning,

I know, I know, I haven't updated in so long. I knew there would be a time when I would slack with updates. It's been so long now since Max's accident and we seem to be just living our lives now as normal as possible and going with the flow.

Max's appts are fewer now so not a whole lot to update and winter was boring for all of us with no excitement to talk about.

Max has had a few appts since I last updated.

One was with his spine dr. (as I call him) and that was a good appt. We don't need to see him now but once a year.

Max was getting xray's done and we had to sit him on the wooden stool as we've done many times before so the can take the xrays sitting up.

Max surpirsed us with holding his head up all by himself and what I think started with a seizure that held his head up ended up after the seizure holding his head up himself.

when he comes home tomorrow I think we'll try and sit him on something hard with no back to rest on and see if he can do it again.

Max is also getting his wheelchair costume fitted so that he sits better and not slant to the left. I love this wheelchair guy who explained why Max is so uncomfortable in his chair and it made sense to me.

This will happen at the end of the month.

Max is also going to try new splints on his wrists and arms that have a spring in them so when Max seizes or stretches and stays in the the bent position the spring will bring his wrist and arms back to the straight position.

His wrists splints will have to slowly be adjusted being that his wrists are so tight right now that they have to be stretched out over time. This is going to be really nice to get back his ROM in his wrists. But these splints are only rentals so I don't know what will happen once he's back to full ROM cuz he'll go right back into the same tightness I'm sure.

So Max will be 13 years old tomorrow. A teenager. Time is just flying by and he's so grown up looking now.

We'll have him home for his birthday. He hasn't been home in quite some time due to van not working and Jim and I have been working weekends quite alot lately.

So, that's my quick update for now. Will let you know how the home visit goes.

I'm sure Max will appreciate being home. He's been liking his dr. appts it seems cuz he's getting out at least. HA HA.

Hopefully the van holds up through the summer to get him out more.

Lisa

Thursday, December 31, 2009 9:47 AM CST

Morning to everyone,

Thought I would update quickly wishing everyone a happy new years.

our New Years is ending sadly to say but not without blessing also.

Our father in law, Ralph, passed away last evening at home with Joanne and Laurie there.

It was expected at some time soon but then you never really know so it still comes as a surprise.

Ralph choosed to stay home and not go to hosp. So, Joanne cared for him and called in hospice to help out.

Ralph had many family memebers come to see him through out the week.

He was very comfortable and without pain.

We were out there on Tues to help out and Jim took Joanne to the store and I cleaned her house. Then we got Ralph repositioned for the night.

So glad that we went out there when we did.

We're so glad that Joanne and Ralph moved out to Howard Lake in Laurie and Johns house (the house next door that they had bought) when they did.

John and Laurie, Ez and even little Gracie were very much a part of the care giving that Ralph needed and the much needed help to Joanne as Ralph got harder to move around.

Gracie kept Gramma (or Gee Gee Ma as Gracie calls her) busy with coloring, washing dishes, playing cards while Ralph rested in these past few weeks.

Joanne and Ralph have been together for 13 years. And have had a wonderful time together camping with our families and going out to eat and just taking road trips when boredom would set in.

We will feel the lost of his presence for a long time.

But we have many,many wonderful memories to hold onto.

We also have a dear friend who we just found out has cancer in his spine. Not sure what kind yet. Karen, Kevin's wife, keeps us well informed everyday what his progress, diag. is through emails of friends.

So with the help of caringbridge friends that we have had through out the years may I ask once again for you prayers for

Joanne, Ralph's family while they grieve the lost of Ralph.

For Kevin, Karen and their children and that they can control the cancer so he can be free of it.

Thanks for your continued support for our family and friends.

Lisa,Jim,Spencer,Maxwell

Wednesday, December 23, 2009 8:15 AM CST

Morning,

Well, here it is Christmas already once again. As we always say "Where has the year gone?"

We've had the usual ups and downs through out the year and I know I haven't updated much. I don't even know if to many people look at the site anymore being things have settled with Max for the most part.

Jim's been busy at work, I've been trying to be busy at work, Spencer is doing well in school this year though he doesn't like it much this time around. He's keeping busy with friends and playing his bass guitar (started a band with his friends)

We almost have the cars fixed. Max's van is going but on it's last leg (wheel). But should work to get him to and from to our house.

Max had a sprained ankle a month ago but is fine. Took him in to have his ankle brace adjusted and the wheelchair guy (went to a different clinic related to Gillete) was awesome in saying Max's wheelchair needs some tweeking to get him to be more comfortable.

Max also has had some stomach issues and needs to see a dr. that we've seen before but it's been years. We were to see him on a more regular basis now that I hear his name but so many dr.s so many appts.

For now, I'm taking a break from appts for the year.

After the holidays it will be back to getting on the phone and making these appts and seeing where his wheelchair appt is at to get that going.

Like I said we've had our sharing (again and will for awhile I foresee) of ups and downs but I do have to say we have also been very blessed in the last year and will continue to be as long as we have our family and friends by our side.

Right now Max's grandpa Ralph isn't doing very well and we don't expect him to see much of the new year to come.

He's at home in good hands with Grandma Congo. Making sure he's comfortable. Joanne has sure earned her angle wings and I think she may have a closet full of them :o)

But if I could ask for your prayers for Ralph and her at this time I sure would appreciate it.

I know from past years how they have helped us so many, many times.

I need to run and get some last minute errands done before the snow flies just incase it's as bad as they say it could be.

Have a Merry Christmas and Many Blessing for the New Year.

Lisa, Jim, Spencer, Max

Thursday, November 5, 2009 8:08 AM CST

Morning,

Jim and I went out to see Maxwell at 8pm last night. Figured if his days are at night we miswell go see him then and not disturb his sleeping during the day.

He looked so cute sitting in the recliner watching tv.

I joked saying I suppose he does this so he gets most of the attention from the girls when he's the only one up that time of day. Doesn't like to share the girls with others.

He also is sitting in his tumble form chair better with his back straight. Before he's slip out to one side but now they say he sits in it better then his wheelchair and they feed him sitting in this chair.

I'm so glad they gave it another try.

I also told Max that we finally got his van running (Jim's car is broken now so it wasn't to much of a choice but a must for sure)

Its not running perfect but we can get Max back and forth for visits which we may do this Sunday so he can get home for awhile.

But other then that he's doing well. Just a little congested in his head as we all had that this past last few weeks.

Spencer isn't liking school to much this year. He does but doesn't. But he's still pulling all A's.

So I just wanted to make a quick update. It's going to be hard to get out and see Max in the eve if I get busy with work in the eve (which I'm not to busy right now which I don't like cuz I could use more with Christmas coming up and boy's birthdays).

I'll let you know if we get Max home on Sunday and update after that.

Lisa

Thursday, October 22, 2009 7:57 AM CDT

Good Morning,

I didn't sleep well last night so this update may not sound right HA HA.

Finally having the van finished being fixed and then it's time to work on Jim's car that broke on Monday and get tires for the van.

I guess it took Jim's car to break to make us get the van aligned so we'd have at least another car to drive.

Max had an appt with his nuero Dr. last Monday and she had a great idea which never crossed our minds.

Being that we've tried to get Max's sleepig habits turned around so he sleeps at night and wake during the day and it's never worked to do so.

He still continues to want to wake up around 2-3pm and stay up til 3 am.

So she said why not treat his 2-3pm as his waking hour and let him sleep all morning and afternoon.

She said that there's nurses round the clock there so there shouldn't be a reason not to work on Max's time schedule if that's his bioclock.

She also said that maybe Max's likes the quiter eves compared to the hectic loud days and that it's not right to try and feed him, have him stand, etc when he's sleeping.

When you sleeping your stomach should be resting too. And that he's not getting any benefit having things done while sleeping

Gee makes sense to us now that she's said that.

The day nurses are fine with this, the evening and night nurses were kind of surprised and thought they were kidding.

I asked that they try and orally feed Max at least one meal then in the eve when he's awake and see how he does. And hopefully they'll take there time being it's later in the eve and the other kids are settled down for the night.

I was told he did good with the new routine and was wide awake for all his stuff.

I guess we'll have to go and visit him in the eve now so not to interrupt his sleeping time in the day.

I would love to see him awake in the stander too and do thigs with him more and being night time could use his lights with him.

I also thought that maybe Max was thinking all this time in the eves when he was awake like "hey, how come I never do anything and just lay here. I don't get fed but yet I'm not hungry."

Kinda felt sorry that he may have thought all he does and lay around and get no attention. But got crabby during the day when tried was trying to sleep and forced to stand and that.

Well, I hope this all works well for Max and the nurses. I know it's out of the norm (it seems) but like me and many other around the world, there are evening and night people that do work or prefer the evening hours over the day time hours.

We are also trying a new siezure med that just came last spring that are especially for Max's type of siezures, so very excited to see if it works. His Dr. said it either does or doesn't no real inbetween results so she's been hearing and seeing.

So that's my update with finally something new to share. I suppose I've lost alot of readers for lack of updating cuz I've never had much to say.

But now that we are getting the van back on the road (really need to clean it also from sitting around and last used with old garbage laying it from long last travels) We'll beable to bring Max home for some family time. Though he'll either be thrown off his sleep schedule cuz of our day time visits or he'll just sleep on us all day.

This will be new interesting.

I wish I could put new pics up too but, the new camera once again will have to wait due to other fixes in the works.

Take care and stay warm cuz winter sure came up on us fast.
Lisa

Tuesday, September 29, 2009 11:38 AM CDT

Hello,

Well another year as of today is here. This time around it's been hard on me more then the last few years. I've anylized this day way to much and it finally got the best of me.

I went out to see Max and of course he was sleeping. But I expected that. Last week he actaully woke for me and so we chatted and I fed him some pudding which didn't go to bad. He can eat orally it just take some work and time.

But today I just wanted to hug and kiss him which I did. And of course cry alot.

I bought a new camera that I had ordered but of course it doesn't work so I have to send it back. So, no new pics.

My mind is also on my brother in law, John, and his family cuz their mother, Marge, Passed away last Sunday and it's never easy no matter whether you expected it some day soon or not.

I was talking to Max about Marge and told him that Marge always asked about him when we would see her. She would say "How's that little Maxie doing?" "Oh I bet he's not little anymore is he?"

She was such a caring person and always concerned about others.

Speaking of Mom's, mine called yesterday and I've been meaning to call her (funny how when you think of someone they call you) So, I should go and call her.

Then I think it's off to nap to try and start my day over and hopefully it'll look brighter cuz if it doesn't it'll be on heck of a long day for me (especially at work when I work alone and my mind is left to thinking to myself. Some days I just hate it)

Guess some prayers are needed to be said to help me through this and to think of others who are hurting at this time.

May GOD watch over them and hold them tight in his arms as they go through their pain and grief of loosing their loved ones.

Tuesday, September 8, 2009 8:38 AM CDT

Man I've never waited a month to update before.

Just add that to my guilt of many things HA HA.

I just really don't have alot to say it's seems.

We do have the van together but realized the tabs are way past due and we need to get the van aligned and at least a couple new tires.

So, there's still money to be dumped into it but that may have to wait now cuz I haven't worked much the last week and need to talk to my employer about that today.

Every time I got out to see Max he's sleeping. He does wake enough to acknowledge that I am there.

Well Spencer is off starting school again. Seems he just got out for the summer. I hate fall and Miss him when he goes back to school.

Just means another year going by and he's growing up and I'm growing old (older?)

I just get so lonely for my little boys at times. I was looking at Spencer last night while he was on the lap top with his head phones on and wondering where that little boy went that I couldn't wait to grow up some.

Now he's grown up to much for me.

I suppose this time a year is a good time for me to get out and see Max more often during the week. Fill that gap in with lots of hugs and kisses to him.

He was in the stander the other day without his table and I was hugging him then. Felt good to hung him when he's upright HEE HEE. I would put his arms around me and he'd stretch bringing his arms in and it always feels like he's giving me a bear hug.

Well, I suppose I should go and keep myself busy so I can keep my mind busy.

I'll try to not wait so long to update and should have more to say if I get my butt out there to see him more.

Lisa

Friday, August 7, 2009 11:11 AM CDT

Good morning,

Finally we are getting the rain that we need huh? Guess we can make that cake I've been telling Spencer we would make for the last 3 weeks cuz we really can't go outside.

I do have to go out and see Max today also. We are trying to figure out how to get his good oral eating going again. For some reason he's not been wanting to eat well and it's really bothering me.

He has so much saliva in his mouth that we are going to try that dry up pill we tried a long time ago and see if it works this time.

He's also such a mouth/nose breather that it must be hard to eat when he doesn't breath through his noise really but more his mouth.

So the nurses are to do more oral stimulation with him and we'll just tube feed him for now. He just sounds so junky in his throat area with the rattling of his spit.

I thought for sure that once his spine surgery was done and he was sitting so straight and tall that he would eat much better and breath better but......doesn't seem to be going that way.

I'm going to have to push Jim alittle here to get the van done. He's getting there but I can understand that it's not something fun to do and need to take a break from it but we really need to get Max home to work with him.

So that's where we are today in the world of Max. Then of course we have this other world here at home we're working on.

I better wake Spencer up so he doesn't sleep all day. We had a good talk last night about books, movies and other things. He's such a kind, opened minded young man. He's so mellow and laid back that some days I think "what's in his head" and " is he going to explode some day" HA HA. I guess I should count my blessing that he's not an arguing kind of kid. He likes to debate not argue he says.

He's had a good summer with good friends to hang with.

Ok, have a good weekend everyone.

Lisa

Thursday, July 23, 2009 11:14 AM CDT

Morning,

Once again I've putting off updating cuz of our crazed life around here.

But Max is doing well. His back looks great. He seems more comfortable when moving and being in different positions.

Jim is tearing into the van to get it done but he would like his brothers help cuz it's a big fix for one person.

Max saw his new dentist and when we went for a cleaning the lady hygenist (sp?) did really well with him and he did so good staying calm. His arms came up a couple times and leg kicked once but for the most part he kept looking at her (probably wondering who the heck she is and what is she doing) even though I kept telling him what's going on.

She had asked me if Max understands what we say and I said well of course I'm his mother so he understands me. But then I said that I actually think he does understand everything but just can't respond back other then his "uh uh's" Which he did alot.

So hopefully we'll get him out and about this fall when the weather is nice out for him.

Sure do miss having him at home from time to time to feel the norm again around here.

Spencer is keeping busy with friends and doing things around the house for us.

Jim and I are playing our coed 35 and older softball. Not doing to well this summer but it's fun and something to do to get our mind off things and enjoy our friends company.

Oh I was going to say I had a really nice guys at the buffalo clinic say something to me that was unexpected.

As usual I make myself cry when talking to Max about things and our situations and I was talking to Max in his ear/shoulder and I started to tear up and when I sat up straight this guy (with small kids) looked at me so I turned away so not to see me crying and I heard him ask if I was ok and I looked at him to say yeah I'm fine and he said well keep your chin up and keep smiling. As he walked out the door he turned pointed to the sky and said keep the faith,keep the faith.

I said thanks and of course cried alittle harder.

Just thought it was nice for someone to take the time to ask if your ok and give some encouraging words.

well, that's it for now. sorry for not updating as much. Just not much to write being we can't get Max out at this time but hopfully soon.

Lisa

Tuesday, June 16, 2009 10:04 AM CDT

Sorry I haven't written in so long. Been crazy around here.

We still haven't gotten the van fixed, had to work on the jeep.

But we've been visiting Max and he's doing really well post surgery.

Dr. was very impressed with his incision healing well.

Max hasn't been eating orally very well though these last few days. He's got allergies that have been bugging him.

We found a dentist for special needs kids here in town that will be wonderful. He actually works out of St. Cloud and also goes to Gillette. So he knows his kids.

Saw him yesterday and I like him alot just from the first visit and his explanation of what he likes to do for the kids such as Max.

Max did get a little wiggy on the say back to Sugar Lake and once we got him in bed he calmed down.

I was talking to him about some things that is going on around here at home and why we've been preoccupied with that. Max has heard this before each time I go out there and when I was telling him again he let out this big sigh like sound as if to say to me "Geez mom do you have to keep explaining this over and over to me? I know"

I think he was really trying to sleep and I kept talking to him and he'd make some other loud (can't explain exactly) noises that I've never heard before or at least not very often that's for sure.

Almost more verbal like he's trying to say things.

The girls at Sugar Lake had a hawain like party for the kids at the end of May. Pictures looked like they had fun.

So, for the most part all is well for him. Wish he'd eat orally better. This is why I would like to get him home to play/work with him when I feel I have more time cuz that's the reason for bring him home is to pay all my attention to him.

When I go out there I feel like it's just a visit and don't feel comfortable doing things with him really. I just like him at home and it's been so long since he's been home. It feels normal I guess to have him here when I feel it's only me to do things with/for him.

But I am so gratful that Max is at Sugar Lake getting the care that he needs.

Shoot I better go, the day is flying by.

I'll try and keep updates sooner then later.

Lisa

Wednesday, May 13, 2009 8:27 PM CDT

Hello,

I put new pics up with Max standing. I know it's hard to really tell how straight Max is and without that TLSO cuz the majority of you have never seen him before, but believe me it's a huge difference.

I told the nurses that it looks like a magician trick with them splitting the person in half. The bottom half looks like Max but the top half doesn't.

I saw him yesterday and he was actually awake. He was in his wheelchair but didn't talk to much. He talks best laying down.

The nurse fed him and he ate really well orally. I was very pleased to see this.

Got his new clothes switched to smaller size. Hope they fit. I was thinking how I can't give him any hand me downs from Spencer as far as shirts go. Max's torso will stay the same now so I guess once I figure out that right size I won't have to worry about length but maybe width HEE HEE.

I'm so proud of him. He's doing very well.

I'm also proud of Spencer. He's doing well in track. He was asked to play in the band his up right bass and bass guitar. It was fun to watch him play with the band.

They gave him recognition for crossing over from orchestra to band for the concert and the teacher was saying how hard it is to do that..

I'll have to put pics up next time of him. He's such a handsome boy. Both of them are.

Well, I guess I should go veg on the couch. I had an early night tonight from work. I'm going to be doing more fill in's and detail cleaning and got rid of a couple of my regular jobs so I could be real busy into the night with last minute call in's or detailing big building. Take advantage of my easier days.

Lisa

Wednesday, April 29, 2009 7:50 AM CDT

Morning,

Thought today was to be nice and sunny out but looks like it's not going to be so guess I'll do house work.

Went out and saw Max yesterday and he was sleeping. He was in his wheelchair and I'm still amazed at how tall and straight he is.

He was having some pain after his higher dose of Tylenol was done so they ordered more. His heart rate would go high and he'd moan alittle when he would exhale. So they figured he was hurting. He didn't get all stiff and wiggy like I would think so maybe he doesn't hurt to bad but just enough to make him uncomfortable.

He hasn't gotten in the stander yet. His PT therapist from school is coming out on Friday to readjust the stander and we'll put him in then so I would like to be there to watch and get some pictures of him in the stander.

Other then that his incision looks great the nurses said and healing well.

Thanks for your prayers while Max went through all this. I think he'll enjoy this summer with a different out look now :o)

Lisa

Monday, April 20, 2009 11:39 AM CDT

Hello,

Just a quick update to say that we got Max back to Sugar Lake on Saturday.

He looks great and of course the minute we get him back there he wakes up and we couldn't stay to long being we had a birthday party to go to for Andrew and Sara's twin girls.

But he seems real comfortable and not in pain. Jim is going out there to see him. I have to go clean one of my jobs cuz Spencer has a track meet at 4 in Monticello so I would like to go to that.

I'll go out and see Max tomorrow.

Looks like the middle of the week is going to be nice so we'll have to get Max out in some fresh air and sunshine.

Lisa

Tuesday, April 14, 2009 7:32 AM CDT

Good Morning,

We all went down and saw Maxwell last Saturday in PICU and he was sleeping until we started to talk to him. He would wake up and try so hard to stay awake.

He also did his talking to us and I think he was saying "Where the heck have you guys been and do you know what they did to me?" Cuz he was asleep when he went into surgery and of course out like a light after words so I don't know if he really crasped what was going on.

He looks so good though. They had him sitting up in bed and his so straight compared to before.

So, we stayed and talked to him while he was fading in and out of sleep and he'd talk back.

Jim went and saw him yesterday. I stayed home to get some food cooked for once and some laundry done cuz I've been gone all day from home since last Wed between Max's deal and working and Last friday was catch up on sleep day.

But Max was doing better, there was some fluid in his lungs and a collapsed broc tube but they did some O2 differently and did those chest taps to helps loosen and get him to try and cough and suction him. His coughing isn't all that great to start with unless it's right there and I suppose it must hurt to cough now.

He's moved to 4 west now and out of PICU. They haven't sat him up in his chair yet but moved him around in bed and they said he's seems to be tolorating any pain so he hasn't needed extra pain meds and is on tylenolw/codine and visteral(?) right now.

I'll go down with Jim on Wed. for sure to see him. Jim said he had been sleeping the whole while he was down there yesterday.

I'll update again after Wed. This time we'll take pics (do you actually believe I will) Yesterday the batteries were dead and forgot the camera card that's sitting here by the computer.

Enjoy the weather, I guess it's going to be nice out all week.

And thanks again for your guestbook entries with you prayers for Max and us. They sure to help Max along during his recovery and give us much needed comfort.

Lisa, Jim, Spencer, Maxwell

Friday, April 10, 2009 9:37 AM CDT

Good Morning,

Well Maxwell did wonderful in surgery. His Dr. said it all went very well and he was pleased with how smooth everything went.

He got Max's spine in the 35 degree angle from the almost 70 degree curves that the were.

He also said that Max didn't loose much blood so no transfusion was necessary.

Max's blood pressure dropped so they gave him something to help that stabilize but that is common and once out of surgery he should return to normal.

They are keeping him sedated til today and then take the breathing tube out and slowly let him wake up.

Jim is calling them right now so hang on and we'll see if there's something different going on........

So they did take the breathing tube out already, and upped his morphine and some valium.

He did open his eye's for awhile and seemed to be in pain so that's why they gave him some stuff.

Oh, lost concentration there for a sec. HA HA

What I was going to say was yesterday we noticed that when we talked to Max while he was so out his heart rate would go up. We thought that was kinda of neat being he was so out of it but yet he can either hear us or just sense that mom and dad are there.

He did move a little also when I would rub his feet.

The rest of him was so tubed up that the only thing we could do was kiss his forehead or rub his feet.

Before he went into surgery of course I cried and cried when talking to him.

We had Max give us his hugs. We would put his arms around our neck and the Max would go into a hug and he brings his arms in towards his chest so to us it feels like a hug when he does this.

One of the nurses had said something about this later and we explained to her that Max didn't intentionally give us a hug but to us it was his way of hugging us.

I forgot to mention last update that we received a wonderful gift from the staff at Jim's school a couple weeks ago.

They all chipped in and gave us a really nice (monatarty) visa card and two tickets to the movies

Just a something to let them know they are thinking of us and Max during his surgery and recovery time.

It was very much appreciated and we would like to thank them for doing this.

I'm excited to take Max shopping for some new clothes when he's all healed up.

And I actually want to take him with so we better get the van fixed HEE HEE Jim, hint hint.

I'll keep you updated on things go with Max in the next week. He'll be moving to the other unit I suppose come Sunday or Monday.

Hope everyone has a wonderful Easter. We have so much to be thankful for this Easter.

Lisa, Jim, Spencer, Maxwell

Tuesday, April 7, 2009 7:30 AM CDT

Good morning,

Well, the day is coming where Max has his spine surgery coming up.

We, of course, are nervous about it.

Wed. he has xray's, blood work, and his g-tube has to be changed over to j-g tube for feeding while there. They said they would get him back to the g-tube before being released. I suppose he can't eat in his stomach cuz of the sedation and fear of throwing up and his reflux.

So the next 2 days are going to be nerve racking and tiring.

I know we've heard of others who've had this done not to long ago and they've done well after surgery with good recovery time but, just going through the long day of surgery.

I have to laugh at myself thinking about the long surgery day and then thinking about the surgeon and others having to do the surgery. Can't imagine the kind of long day it must be for them. Suppose if they do these often it's not so out of the ordinary but then every ones spine is so diff that they don't know what to expect once they start.

All we can do is ask for prayers from all of you for Max and the surgical staff and that all goes well and that they are able to get his spine as straight as possible.

We had to get a new hard drive for our computer so I dont have pictures to put up. I haven't taken any and I'm not sure what I have for editing now. The guy who helped us put in all the stuff we need has put in what we need but and I don't have alot of what I used to use for different things.

But, some day I will find the time to explore what I need to do to keep this running well for a longer time

Well, that's it for now. I'll update after surgery to let you know how it went. Max well be in the hosp for 7-10 days and we'll have some of his other things tweeked like his wrist splints, wheelchair, meds and what not.

Thanks for you prayer for him on Thurs and for the last past years. You have helped him through so much and us with your support.

Lisa, Jim, Spencer, Maxwell

Friday, March 27, 2009 9:39 AM CDT

morning,

Well we have our computer up and running but I'm not liking not having AOL as my server and Spencer doesn't want me to download aol cuz I guess it slows your computer down which I've heard from other people.

we also have a smaller Monitor that bugs me but in time will get a bigger one. And we have to get our pics out of the old drive some day. At least me not liking the new set up and all I don't waste so much time on the computer HA HA

We did get out and spend time with Max last Sunday.

Grandma Joanne was there with Grandpa Ralph and Grandma Karen came out and so did Aunt Laurie and Uncle John and also Gracie came to see Max.

Max actually woke up for us and stayed awake. He sure did look around especially when Gracie would talk.

He does have some pink eye or something going on cuz his one eye was really red.

He had some of his ice cream cake which was really neat. The lady that Joanne orders the cake from (DQ) made a young boy with a baseball cap on who's sitting in a wheelchair on top with the icing.

We would have picture but go figure I forgot to put back the camera card in the camera. Joanne took some pics but I don't think she knows how to get them out of her camera into the computer.

We are so smart about everything else but computers HA HA. Like I said I can't even open up anything with what we have set up here on the new hard drive.

I guess I should go the day will fly by fast for me and I didn't get anything done yesterday.

I've been on the phone alot re: Max's back surgery coming up and he has lots of tests, xrays, and has to have his G-tube changed to a g-J tube so that he can be fed passed his stomach and to his intestines so as not to throw up I guess after being in surgery for so long and not being able to sit up for a few days.

Take care and stay warm some where obviously not here in MN
Lisa

Tuesday, March 17, 2009 8:48 PM CDT

Hello,

Sorry haven't written again in awhile or at least I don't think I have. I didn't look.

Anyways, our computer has been down for the last week and I don't think well get around to getting another or figuring out what we should do til this weekend (trying to get ours fixed or if it's totally hopless we need to take it in and figure prices too to see how cheap we can get by with)

Max's birthday is on Friday and guess what else is broken????? yup the van. So we won't be taking him anywhere or bring him home. We'll have to go out there to celebrate with him.

So, we are having one of those when it rains it pours month.

I'll updating again when I can get to a computer. I'm at a cleaning job right now where they have one I can use and SPencer can get some home work done.

Ok, I'll get back to ya soon I hope with happy birthday news.

Lisa

Monday, February 23, 2009 8:14 AM CST

Morning,

I know it's been longer then usual since I've updated. Our lives will be somewhat normal agian now so I can get out and see Max like I had been before. Of course like always, he's sleeping during the day usually.

We did do his triple IIIP for school with no real change. Basically waiting for his spine surgery before making any decisions on anything more for him.

Once he's in the hosp for this we'll tweak some of the things needed for Max like splints for his hands and stuff.

I was looking at pictures and man have we slacked on taking new ones for quite some time. The bottome of the camera where the batteries go keeps falling open so the batteries don't stay in, and duct tape just isn't what it used to be HA HA.

Oh well....

So really again I don't have alot to say. Max was wide awake (go figure) when I was out there for his Triple IIIP but I didn't have much time to visit being I was there for the meeting.

Hopefully will have some thing to say once I get back in the swing of getting out there more.

Lisa

Friday, February 6, 2009 11:19 AM CST

Hi,

I know I haven't written lately. Guess I just don't have anything really to say.

It's been so cold that we never want to leave the house.

The day's I've been out to see Max he's always sleeping.

I just haven't found the time to really just hang with him during the week cuz I've been so busy with work and working late that I can't get out of bed at a decent time (which I know shouldn't be an excuse but I'm getting older and cleaning all night is taking it's toll on me HA HA)

The weekends go by so fast too trying to get stuff done around here. Our van needed work on it, so Jim was working on that last weekend.

Spencer had his jazz band concert on Monday. It was really good for kids just practicing once a week for an hour.

We did get Spencer a new guitar so he's excited about that.

Max has his triple IP next week so will get out there early to see him and then have the meeting with his teachers.

I told Max the other day that we'll have to get him out alot this summer to make up for this cold winter.

He just UH UH's at me in his sleep when I talk with him

He did feel kinda puky last week but is better now they told me.

The sad news is one of the kids passed away that was staying out in Sugar Lake. I've been saying prayers for his family and how hard this must be on them but yet a blessing so he doesn't have to go through any more health issues and he's now free from his disablity.

I wonder if Max realizes it and if they told the other kids.

I wonder if Max wonders where that one cry went that he would hear every now and then. He didn't like to be moved around or in the stander.

The girls took wonderful care of him even when he didn't want to do the things he needed. they would just talk to him explaining he needed these things and he's going to be fine.

I'm also keeping Sugar lake staff in my prayers cuz they grow so attatched to these kids like they are their own. And also that they find a child that would like to stay there so that the full staff can go back to work.

Not the best time to be out of work as you all know.

Well, I should go. I still haven't talked to my mother in law yet as I do every day. We went one day without talking and she just had to call me yesterday saying she can't go two days without talking HEE HEE. We are creatures of habit. But I enjoy yacking with her and love her so much. so it's not so much a habit as it is more a joy.

Thanks Joanne for always being there for our family. We all love you very much.

Lisa

Saturday, January 24, 2009 5:33 PM CST

Hello,

Another cold weekend so no snowboarding for Spencer and his friends that we've been trying to do since his birthday.

Spencer and I did go last Wed and I took that womens clinic and had so much fun.

I think I'm ready for my own snowboard stuff and I'm going to make it my winter sport (hobby) it was that much fun.

I can't wait to go again but the weekend lifts are so expensive and then plus the rentals. But oh well...

I went out to see Max yesterday and he had just got out of the stander and was sleeping so hard that nothing I did would wake him much less did I get any chatter out of him while he was sleeping like last time.

So, I just talked to him in his ear and gave him tons of kisses.

I also just got back from taking Spencer shopping for some clothes and got super good deals. 100 dollar jacket for 30 dollars and a 50 dollar sweatshirt for 20. Stuff like that.

I Like and can handle that kind of shopping. Penny's had the buy one get one free stuff too so that was cool.

I can't wait til Max get his back straighten out so that I can buy him some normal clothes that fit only him and not that TLSO that he was wearing.

Guess I better pay some of that Penny's card off so I can go hog wild for him cuz he'll need all new clothes after surgery.

I think we should take him with too just for something to do and see what he thinks of shopping for clothes. He always loved buying clothes. He went for the clothes before the toys when we'd garage sale. (loved his striped shirts)

So, that's it for this update. Nothing (again) to exciting as far as Max goes. I told him that it's been either snowing so much or super cold. So none of us having been doing much of anything and sleeping isn't such a bad thing til spring comes

Lisa

Saturday, January 17, 2009 9:16 AM CST

I know, it's been awhile since I've updated.

Still not much to say. The issue that we have going on in the family that I can't really talk about is almost resolved in one more month.

So, I went out to see Max yesterday to talk to him about it and to tell him that soon maybe we'll all be back to normal again which didn't look so bad when you think about it after going through these last 6 months.

But I also told him it's been so cold that no one that's sane would go out unless absolutly necessary.

He just got out of the stander so he was sleeping but would still talk to me with his eyes closed and every now and then he'd open them and look at me and then close them again.

I don't know if he was so tired that he just couldn't keep his eye's open or was mad at me (us) not coming out there more to visit him and was just peaking at me and ignoring me.

But he did alot of talking to me.

I didn't have his pump turned down last week like I thought I would but we talked about the possiblity of it being shut off or I should say just having it at the lowest dose and keep it for some time before actually having it removed.

He's so low now and he's not showing major need for it.

We do need if for his surgery coming up to help with the pain and his tone if he is in bad pain.

His one ankle that turns in (left leg) is because of lack of tone the DR. said. But we think botox could help that.

Well I have the day off with no extra work to do so I should work on my own house here.

It's getting deep in dust bunnies. Even the cats are afraid of them HA HA.

Oh, I'm going snowboarding with Spencer (well he'll go on his way while I take a lesson) this wed. They have a womens clinic for $10.00 and you get the ski lift, rental, lesson's and afterwards there's wine tasting.

I just hope I don't break anything. I just read in the paper that snowboarding is the number one outdoor activity for injuries. OH GREAT. Just what I wanted to read. Maybe it's a sign for me to not do this HA HA

So that's it for now, stay warm
Lisa

Friday, January 2, 2009 11:59 AM CST

Happy New Year.

I know I haven't updated in awhile. We've been, of course, busy with the holidays and being in the middle of the week.

My Jobs get all screwed up and I seem to be working at all different times of the day.

We did have a nice Christmas. We brought Max home and had him sitting up on the couch but of course he was sleeping the whole time. He did start to wake up about the time we were ready to bring him back to Sugar Lake.

We didn't bring him to the family party this year and I sure did miss him. It didn't feel right without him there. But we managed to have fun and we were really tired when we got home.

It's almost time for Spencer to go back to school and get back into the same old routine with school and he'll be having his bass guitar lesson's again and stuff.

We are taking him and friend snowboarding again this Sat. I'm thinking I would like to try snowboarding and just play around on the bunny hill(which really looks like a mountain to me HA HA). To see if I like it and can get the hang of it on my own (doubt it)

Other then that. We need to get back in to our routine also and get Max home more and out to see him more.

Now it's just a matter of time waiting for spring to come around being the holidays are over. Oh shoot. I forgot I have the tree and all to still take down.

And Spencer's birthday is this Sunday so I have to figure out what to get him (money I would guess). Hard to find money these days HA HA.

I'll get the new pics up soon here. I need to get going, I have tons of work tongiht to do so I can have some what of a weekend off.

Take care
Lisa

Monday, December 22, 2008 7:30 AM CST

Just a quick update about nothing HA HA

Didn't get out to see Max last week. Just way to busy with Christmas coming and working extra jobs and not getting home til after midnight. I'm beat during the day.

I'm either getting to old for this cleaning and/or the buildings are sooooo messy with the weather and all the salt and sand being tracked in.

I did talk to the nurses and they said Max's legs are doing better with this purple color they were turning.

They snow and cold threw us off this weekend and spent alot of the day just moving cars around, snow removal etc.

My employer was nice to swing by our place when he was in town and said he was thinking about Jim and his bum arm and plowed out our drive ways with his truck.

But of course it got snowed in again and wind blowen snow.

Jim's in therapy now for his arm so hopefully he's on the mends. His Birthday was last Friday and his sister (and family) and brother came out to celebrate with him. It was really nice and we had fun as we always do with Jim's family.

I'm hoping it's not to cold on Christmas to bring Max home adn to the party.

Our van isn't real trust worthy anymore especially in this cold weather.

But if anything we will get him home and if it gets to icky outside (and so cold in the evenings) we'll just bring him back to Sugar Lake.

We wish every one a Happy/safe Christmas.

Thank you all so much for your continued support for us and your thoughts and prayers.

Lisa, Jim, Spencer, Maxwell

Tuesday, December 9, 2008 7:51 AM CST

Morning,

Well, our Dr. appts with Max are done but still have many more for Spencer and I and I think Jim has one coming up for his arm.

So the conclusion to why Max's legs and arms are turning purple so fast is that his autonomic dysfunction is acting up again but he's not having the low temp or tummy trouble which his neuro would think would also be causing him problems.

We are going to try a med to help but she ordered that Max gets in the stander not 2 times a day at an hour but like 20 mins 3-4 times a day so he's moving more.

Plus she would like the nurses to rub his legs 5 mins (and or move them while in his wheelchair/bed) 4 times a day.

She thinks he just needs to move and get repositioned more.

I don't have a problem with that, that's for sure. I would like to see Max moved around more and change his position and I think standing more often then longer is better.

One of the nurses said that she had been doing the legs moving while Max is on his therapy table and said of course he doesn't like it at first and you have to let him relax and then start again.

I had to laugh cuz I knew what she was talking about. I don't know if he gets caught off gaurd even if you tell him what your going to do or he's just being our little stubborn boy HEE HEE.

Jim's arm is still hurting. so that doesn't make us happy and of course him more then us. He gets fustrated at work cuz he can't do what he would normally do cuz he's on light duty.

I still have Christmas stuff to get and just don't feel like it. We got Spencer all set up for snowboading and he's excited to go. We got really good deals on everything.
I promised him we'd go this saturday. Well Jim won't go but I'll maybe have to rent and go and Spencer said he'd invite a friend so maybe I'll just bring a good book and sit in the building. I certainly don't need to break anything at this time.

Well, I better go. I finally have a chance to stay at home and get some things done.

Lisa

Monday, December 1, 2008 10:24 AM CST

HI,

Well here it is, Dec already. I have one day left of vacation today and my 4 days off went really fast. I was to have 5 days off but worked on Thanksgiving cuz I didn't get all my jobs done the night before.

We did bring Max home on Saturday to help decorate the tree but it didn't pan out as I had planned. Spencer had invited a friend over and changed the time from 1 to 3 so that he could help with the tree. Well half way through he said he was done. And then his friend showed up soon after.

Time just flies but at the same time I'm thinking hey, we do this tree thing for you not me. If it was up to me now I would have one of those optic fiber table tree and nix the whole big, real tree thing HA HA

Then our neighbor showed up and so Jim was out in the garage talking to him. I thought man, where did everyone go. I told Max that it looks like it's just you and me.

But then Jim came back in the house and sat down with Max.

The neighbor sat in the garage watching TV for some reason HA HA

We didn't get Max to the store either cuz it was just getting late and close to dinner for him and I had planned on him being back by dinner time and didn't have anything ready for him at home.

So, the day just didn't go as I had planned and didn't even get pictures of the boys like I wanted.

I told Max that we'll have to make sure he comes home when there's nothing going on and we can just sit with him.

He did look at the tree and all the lights though. He didn't talk to much to us. He was asleep when we brought him home and I told him he had to wake up when we get there and sure enough he did but he has so many seizures when he wakes from a nap that it took him awhile to get his head straight

He's been wearing ted socks that seem to help his circulation. His feet weren't really purple at all.

We do see his orto this wed. so this will be the big appt re: what his back is like and maybe the answer to his problem.

Jim did break his arm up by his shoulder there and has little tears in his rotator cuff (cup?).

So, they aren't doing anything about it now and he was told of some exercises to do at this time and then he goes back to the Dr. in 3 weeks to see how he's healing.

So other then that, it's back to the same ol same ol now til Christmas

I'll let ya know how his appts go after there done.

Lisa

Wednesday, November 26, 2008 10:13 AM CST

Just a quick update before Thanksgiving and then I'll have new pics and more info on how Jim and Max are doing after the holiday.

Jim finds out today what his MRI says about his arm (he had the MRI done last Friday) Now he has a cold on top of all this.

Maxwell still wants to turn purple in the legs when standing and in the wheelchair.

We have an appt with his Ortho on Dec 3 and we'll see what he says and then if he doesn' think it's his back (spine) which I can't believe it wouldn't be cuz it's always when he's upright so I would think the pressure of his spine is causing something to change in him. But we'll move on to his appt with his neuro and have his pump turned down when there with the nurse practitioner.

I'm taking Spencer and Max to get their flu shots today.

Then of course we were going to bring Max home for Thanksgiving if we are feeling well (Jim that is and if I don't get the crud)

Cuz I really don't want to put Max at risk with a cold and then take it back to Sugar Lake for the other kids.

But I was thinking last night that I think being we get our Christmas tree every year the day after Thanksgiving that Max would enjoy coming home to help decorate the tree instead of just laying on the couch while I'm in the kitchen all day and I don't get a chance to play with him and then we eat, I feed Max and don't really eat til he's done and then we're full and tired HA HA

So, that's our plan now is to bring him home to decorate the tree. With all the lights and that I think it would be more fun for him. And the we can have left over turkey dinner later.

So, I better get running. I slept in late cuz Spencer has off school now til Monday and I still have tonight to clean and then I have off til Tues and I'm sooo looking forward for some time off.

Hope everyone has a Blessed Thanksgiving,
Lisa, Jim, Spencer, Maxwell

Monday, November 17, 2008 10:58 AM CST

Hello,

WOW what a weekend we had. Drama seems to find us always on Fridays and stays with us through the weekend.

Maxwells legs weren't getting better if not worse and his arms showed some slight discolor and when I got out there on Friday afternoon it looked like around his eye's were turning a slight bluish

So, we were advised to take him down to childs in Minneapolis and had him transported by ambulance cuz I was scared to drive him in his wheelchair being he turns purple when up in the chair.

But before all this was really going on, I got a call from Jim at his work and he told me that he had pulled his shoulder muscle while ....well that's a whole long story in itself but he apparently did like a partial dislocation of his shoulder.

He called to tell me this and that he was going to the ER out there and the school nurse didn't think he should drive home to our hometown ER.

After he had called I had received a call from Max's Dr.s nurse saying we should take Max in to Minneapolis ER.

I called Jim back telling him this and he figured he would drive home and stay with Spencer and that I could go and meet Max at the ER.

I was really scared and nervous being there by myself not knowing what they might find and what decision I may have to make without Jim right there.

I called my Aunt and she and my other Aunt met me at the ER to be with me for suppport and help me to understand anything that may have came up where I would shut down if I hear something that would make me upset. I'm good at that. Tell me something bad and not wanting to hear and I don't hear anything after that.

Joanne was concerned about me being there too all alone and was trying to call Scott or someone to be with me. My sister in law, Laurie had just gotten back from out of town on bussiness and was beat, Joanne wasn't able to just pack Ralph up and go otherwise she would always be there for us, but I had let her know my Aunts were going to meet me so she felt better about that.

Max came was released from the Hosp with no findings as to why he's turning purple in his legs.

So, back to the drawing board and calling all his DR.s to see what they would like to try next.

Max has no blockage any where that they could find.

Like his school PT teacher said that maybe we just have to challange his heart more and get him going again being it's been awhile since he's been up because of his TLSO not being ready and fitting just right (which never does)

Well I should get running here. I have to go out there to bring his one AFO that I forgot in my jeep the other day.

I'll let you know if Max's purpleness gets better. I told Max purple and red hair doesn't go well together so he should not turn purple (he he).

He doesn't show any signs of distress so, at least he's not in pain.

And he just talks his talk to us. OH, we did get a smile out of him Saturday when I was going to lift him off the bed and into his wheelchair.

Thanks for the prayers being sent our way for Jim and Maxwell. Very much needed right now til we figure out and get past all this stuff right now.

Lisa

Friday, November 14, 2008 9:08 AM CST

Morning,

So glad Friday is here and the weekend is just around the corner.

You know how I keep saying I really don't have much to update on about Max.

Well I do now and I wish it wasn't depressing update.

Max does so well for so long but when he wants to upset his parents he does that well too.

I've been told by the nurses about Max pitekia (sp?) and agreed that, that was a odd thing for Max even though he does get that from time to time but this was all around his AFO's he wears for his ankles.

Well now that has gotten better but the nurses have called to tell me about how Max's legs from the knees down get super purple when in the wheelchair.

I have to admitt I was an ick about it and that Max does get purple feet from time to time when in the chair.

It wasn't til I went out there yesterday and saw the pictures that I was sooo taken aback by how purple from the knee's down that I swear they looked like black socks on him.

Max's PT teacher was out there and we tried different things with him as did the RN and the owner of Sugar Lake did with Max the night before as far as placing him in the wheel chair with pillow behind his legs and the purple wasn't so bad but without the pillow they became purple pretty dang quick.

In the stand without his socks on so we could see what happened, they did turn purple and his legs at the ankles seem to want to bend to the left pressing on his AFO's out edges.

We tried him without the AFO's on and stood him up (of course we aren't even having him stand close to being totally upright) just to see if maybe he was reacting to the presser of the afo's against his legs and that didn't seem to matter re: his legs turning purple.

When I think back to us having him in the wheelchair and look at pictures in the past wondering if this is the norm for Max, it obviously isn't.

Like I said we have seen his feet get red, purple in color and of course we would put his feet up right away or take him out of the wheelchair.

But when we've taken him to like Joanne and Ralph's camper in Howard Lake in the summer with his shorts on and his socks down around his ankles (with his shoes on) but the time we get there and get his things set up to lay him down his legs were NOT purple (much less I can't remember his feet being other then colder and red color).

Cuz like I told Jim we would for sure notice and would have just died if we saw his legs as purple I saw in those pictures. And we too would have wondered what was wrong with him.

The purple goes away pretty quick when he's laid down.

I still think his spine plays a huge roll in this cuz that's the only big change that has happened to him and it's so curved now.

I have calls out to all his Dr's and a appt set up for his ortho Dr. that deals with his spine and TLSO.

It's just a matter of time to wait back and hear from them and go from there as to what we should do to figure this out for Max.

So like I said I'm glad it's the weekend and I pray that Max doesn't have any issue so that my brain can relax for awhile before the next week starts with what could be many appts.

I also have to be very gratful for Max being at sugar lake for the nurses taking such good care of Max and for them not hating me when I get so defensive and upset when Max has change that's not for the better.

I like to think that for the most part I am a pretty reasonable, understanding person and agree to their suggestions but there have been a few times where I'm an icky mom and they end up having to deal with me and I know I should get that way.

I hate to hear about Max's problems and hate to think of him taking a step backwards. I just wanted him to get back in the stander cuz it's been so long now.

But we all are on the same page and with the help of his PT teacher we moving towards that.

I just keep thinking that Max can't possible have any more trouble or issues cuz I feel he's had the worse 8 years ago and he should be left alone with any problems. But of course that's not reality and because of that day 8 years ago I should know better that he will have other issues down the road that we will have to deal with.

I guess it's that he stays so health for so long that it's hard when he does get sick or other problems.

Max's PT teacher said that she has a boy in school the same age as Max that also had that spine surgery with the rods and also a baclofen pump and she was amazed at how fast he recovered from surgery and was ready to go to school in 4 weeks time (he had the surgery in Setp). So that too was comforting to hear along with my friends nephew who did so well after words.

And with Maxwell's legs getting purple like they are and if his spine does play a role in it, well I guess I'll be ready and accepting for this surgery. Not to say I won't shed a million tears before, during and after til I see him recovered but...........

So there's my update that I said I would give you with more then "well not much to update on" Guess I should be content to give updates with not much to say HA HA.

I also wouldn't mind some prayers for Maxwell if you have the time to say alittle something for him. It's been awhile that I have asked for Prayers for him.

Christmas is coming up and I hope that he will be able to enjoy it without having to deal with any complication or illness (Everyone I talk to has had the flu or some nasty colds going around already for the winter season)

Thank you for the thoughts and prayers for Max
Lisa, Jim, Spencer, Maxwell

Monday, November 10, 2008 10:58 AM CST

Morning,

I know I haven't updated in awhile. I really don't have much to say lately.

After Max received his TLSO finally to wear it was fitting better and his AFO's readjusted too, he hadn't been in his stander for quite awhile.

His legs just below his knees would get some what swollen and get that patekia (sp?) on his legs.

I had taken him in to his ped's Dr. and she said it was probably from not standing for so long.

She did blood work to make sure he didn't have any infections and he did and that was ok.

Well they put him in the stander again and the same thing happened.

To make along story short they are now finally this week going to try him in the stander at a less high angle and shorter time and gradually work his way back up to full upright height and for an hour twice a day.

I'm going out to see him tonight after work.

I was with my friend who's nephew had that spine surgery done with the rods put in to straighten out his spine and she had told me how well he's doing and gained like 3 inches in height.

I was so excited to hear how well he's done with it all and now am not so fearful of Max having to have this done some time in the future.

Well it's monday, my lazy day but that doesn't mean I can totally lay around on the couch all day. I do need to get some things done. So, I better get going.

I'll update again sooner and maybe get some new pictures up being our camera is still working.

Lisa

Monday, October 27, 2008 11:04 AM CDT

UHGGG another Monday,

Made it through my long week last week but barely HA HA.

We didn't bring Max home on Sunday. The Gosewisch Family got together for Joanne's birthday at Laurie's house.

But we still didn't bring Max though. Weather was just to icky and I had scattered my jobs around and ended up working til we went out there and had to work when I got home again.

Laurie's house was full though for sure with Andrew and Sara's little twin girls (who are getting pretty big little girls) Their soooo cute. Gracie was there too and we love listening to her talk, talk, talk.

2 dogs running around. Eza has a new dog and Brittney brought her little dog. Makes me want a dog but then..........no.

And not everyone was there. Burl is down in Az going to school, Jessie and Shanna wasn't there. Grandma Karen wasn't there. And like I said we didn't bring Max.

Have to wonder where we are going to have Christmas this year as the family is growing.

I guess Max has been staying awake all night and sleeping all day.

I was out there Saturday and roughed him up some with bear hugs. Told him he needs to stay awake so he can sleep better at night.

He did stay awake for me while I chatted with him. He chatted back some.

I need to make at least 3 appt for him. He just got his TLSO back so he needs to wear that like 5 weeks before that Dr wants to see him. The other 2 his neuro and dentist I can maybe I guess make now and see both of them like I've done before.

So that's about it now. I slept in today so I better get going and make some calls and get some things done around here. Let things slide yesterday.

Lisa

Tuesday, October 21, 2008 7:43 AM CDT

Morning,

OH my gosh it's just to cold for me and NOT looking forward to colder weather.

Hopeing for more warmer weather over the weekend to get Max out.

Thinking about bringing him home this Sunday. Guess we'll play it by ear.

I did get Max in to fix his TLSO and AFO but they had to squeeze us in so we didn't get to bring the TLSO home and will be sent to us. I need to call and make sure that they've got to work on it and send it out asap cuz he's been without one for to long.

I also have 3 appts I have to set up for him. It would be nice to get them in before the snow flies. But it's not always possible being the time we need to see these guys it always winds up close to winter.

Max just chatted his chat with me when we were getting his TLSO worked on. Funny thing was he was sleeping when he kept chatting.

I guess our camera is working again. Put new batteries in it HA HA. I swear we did that and it still didn't work.

But other then that again I don't have alot to say cuz we haven't done much.

Lisa

Monday, October 6, 2008 7:50 AM CDT

Morning,

We brought Max home finally yesterday. He was feeling a little under the weather the night before but was fine by later that night and the next morning.

I did have to take him to the Dr. on Friday afternoon for his legs getting those small red dots, broken blood vessels. I can't spell the word I would call it. Anyways, his legs get a little swollen at times and his ankle braces, AFO's are a little tight then.

But, We went out last Monday to see Max being it was his anniversary day so, in the eve after work we all went out to see him and he sure was looking at Spencer.

One of the girls at sugar lake cut Max's hair and the gaurd fell off the shaver and took a patch out of his hair. I told them they should have made another hunk of patch out on the other side to even it up or make checker board all over and start a new trend HA HA.

But I told Spencer that Max was looking at him probably thinking, man I wish I had your hair right now.

So we had him home yesterday and Joanne and Ralph came out to visit.

Max sure did talk alot. It was neat cuz he would be quite listening to us talk and then we would ask him what he though or ask him to talk to us and sure enough he would start in with his talking to us.

He seemed to have a lot on his mind with his "UH UH's".

I'm actually feeling better about his possibly getting and will some time down the road about his spine surgery and having those rods put in.

I was thinking that when asking Max to hold his head up and blah, blah, blah he probably is and doing his best but can't move it well to the right and hold it straight cuz his spine is so curved.

I had to apologize to him knowing he tries but can't (probably) cuz of this reason.

So I won't mind this surgery he'll get some time but just hate to seem him go through it. Just wish it didn't have to be so scary and hard in the beginning after the surgery.

I don't know how the one boy I was telling you about is doing. He stopped his web site and I haven't talked with my friend in awhile about him. Last I heard he was doing very well but that was a while ago so I would assume he's still doing great after having the same type of surgery.

Well, better get going. Ton's of things to do today. I worked most of the weekend and put off doing what I should have gotten done.

Lisa

Monday, September 29, 2008 1:48 PM CDT

Hello,

Well today is Max's 8 anniversary of his accident. I almost forgot believe it or not til my mother in law brought it up today with me.

I guess I have so much other stuff on my mind that I didn't think about what day it was though I did think about Max this morning while trying to wake myself up this morning.

So, Well all go out and see him after I get done with work tonight cuz I know he should be awake then.

Last week when I visited him I went in the eve and we chatted and then the other time it was during the day and he woke long enough to chat and then he fell asleep so I just laid with him on his bed and held him.

I could have fallen asleep too he was so comfortable to hold. I'm thinking this sunday we should bring him home and I can snoozy with him LOL.

So, now that I've realize it's his day, I've been alittle on the anxious side and among other things that' always is in the back of my mind that are unsolved as of yet.

Anyways....another week to get through.

Lisa

Wednesday, September 17, 2008 7:32 AM CDT

Morning,

I know you must be sick of looking at these same pictures but like I said our camera broke so I don't have any thing to take pics with at this time and I haven't really looked at any old ones and resized them to fit the site.

So....We did get Max down for his new TLSO. We are still waiting for it to be sent here at home cuz they had about a half hour of still adjustments and it was already like 4:30 in the afternoon and really wanted to get going after being there at 9 am.

Max slept the whole time during this and finally woke up on the way home. That's his time to wake and he does this like clock work.

Other then that Max has been doing well. He's been eating orally great from what they've told me. He really likes their new menu that they made for him.

I was out there Monday night (I cleaned the city hall) so thought I would go visit him being I'm out there and of course he's always awake at night time.

He talked with me while I was there. He had just gotten ready for bed and was watching tv.

Spencer seems to be getting off to a good start with this school year.

We went to Taylors falls this last weekend for our nephews wedding, Burl and Brittany.

They were going to have it outside but of course it rained like crazy the whole day so there just wasn't an option to have it outside like they would have liked.

But it was still a very beautiful wedding.

Well that's that. Looks like a nice weekend coming up to get some things done outside and ready for winter. I don't think we'll get much more nice weather after this weekend.
(just my feelings on it)

Enjoy it while it's here I guess.

Lisa

Wednesday, September 3, 2008 7:26 AM CDT

Well I'm slowly running out of updates cuz there just hasn't been much to say lately.

All of us went out to see Max and even Max didn't have much to say LOL.

Nurses said he's been doing well other then he hadn't been sleeping at night.

I told them to give him some of his sleepy med at night to get him back on track.

He has a pump refill this friday (I may have his pump dose turned down) and then next thurs we go and get his new TLSO fitted which I had cuz it's such a long day for all of us.

Other then that, I can't believe school has started and winter is on it's way.

Time to get things around the house in order and buckle down soon for winter.

Well update again and hopefully I'll have some more to say now that I get up earlier to see Spencer off to school and I get my day started sooner.

Lisa

Tuesday, August 26, 2008 10:40 AM CDT

Morning,

I really don't have anything to say today. We didn't bring Max home last weekend.

Soemthing came up unexpecttly that we had to deal with.

We'll maybe try for this weekend.

Lisa

Thursday, August 21, 2008 9:53 AM CDT

morning,

Thought I would give a quick update.

Max had his molding done for his TLSO on Tuesday.

He didn't like it this time around. Having to lay on that table where his tailbone is balancing on a small metal bar and his legs and shoulder/head are more on a table.

He was kinda fighting us at times and I couldn't get his arms out so the guy making the mold could wrap him with the gooy clothes stuff.

But that doesn't bother me, just shows me that Max can show us when he's not happy or uncomfortable.

What I did find interesting was when Max was laying on the other table with his stockingett on before the molding was that his left arm would come way up in the air and he'd hold it there for a while.

I asked him what he was doing with his arm. And again his arm would come way up.

Almost like he was going to do something but forgot LOL (short term memory isn't that good)

He was slowly drop it down over his chest.

He wasn't having a seizure cuz we certainly know what they are now and what to look for.

Then the PCA that was with me would lightly run her finger down his arm and he would pick it up and pull it away.

I know he's picked that arm up before in the past but this time he would pick it up real high and hold it there and then slowly lower it down over his chest.

Then when I got him back to Sugar Lake and laid him on the bed, I let him lay totally flat to stretch out for awhile.

I was facing him with my back to his legs leaning on the bed and I heard and felt a thud on his bed.

I looked around and noone but Max and me were there and I asked Max if he had just lifted his leg and kicked on the bed.

He didn't do it again. and of course he didn't do these things when I asked him to.

Max's nurse just called and he was crying with his old TLSO on so I guess we'll just have to use that for when he stands in his stander. He's really out grown it.

The nurses also have been telling Max is eating really well orally lately.

Maybe going through a growing spurt.

But one of the nurses changed Max menu up so he'll be getting better meals which I'm so happy about.

My other boy, Spencer, is growing up to fast. He's been talking to a girl that he used to find (and his words) "irratating".

He said she's not so irratating now. This girl moved out of town and comes to visit.

We kinda had that "TALK" but I think it's time to talk more with him.

He gets very defensive when we talk such personal stuff.

I'm soooo not ready for him to like, like girls.

I had asked him if he treats girls like one of the guys. and He said he does.

I said well when you stop treating girls like one of the guys can you come talk with dad and I. LOL

That's when we got into more of a point blank (his words again) decussion.

I had a good (bad) cry about it the other night.

Missing my (little) boys I guess.

And of course I know where Max is at and so Spencer gets the ALL the big worries from me cuz going to be making some big decisions in his life now without Dad and I there to make sure he makes the right ones (well the right ones in our eyes LOL)

I find myself thinking I'm going to be one of those mom's where there's no girl good enough for my boy and will be very judgemental when that times comes.

I wrote Spencer a long letter that I have to rewrite better and give him and maybe that will help and he'll keep it to reread maybe.

I'm so glad I have the family I have to talk about this stuff being they've gone through this teenage years already with their boys.

Well, the day is flying by and I have tons of things to get done before work.

Have a good weekend. Oh, were bring Max home this weekend to hang out finally. Excited about that.

Lisa

Wednesday, August 13, 2008 8:53 AM CDT

Hello,

I know I haven't written in awhile.

Not a whole lot to say.

Jim had last week off and we didn't do much cuz I still worked that week. Just stuff around the house.

I won't be putting up any new pictures cuz our camera is not working. We even lost the pics that were in there.

I was out seeing Max yesterday and he was of course sleeping.

I didn't touch him at all and just went up to him and said Hello Max. This is mom.

And he gave me a big stretch almost like he was going to wake up (and in my mind sit up and say Hey mom)

But he went back to sleep. So, I talked with him some more before kissing him on the cheek and he talked his talked to me with his lips moving.

Finally I gave him a kiss and he laid there talking to me in his sleep.

I had to smile cuz he was hearing me but just not able to wake up.

I'll have to go out there Friday maybe in the eve when he's awake.

It was brought to my attention that one of our friends nephew had last Monday the same surgery that I was talking about last journal.

I've been following his progress and I just can't stand the thought of Max having to go through this.

This young man has been in quite a lot of pain. And there's a few things that takes time to get back in shape like they had said his digestive system, and that he had to start out slowly with eating again.

I hate the thought of having to get Max to orally eat again after not eating for a few days. Hopefully he'll pick up where he left off.

Sitting up was hard for him the first few times.

I guess it's hard for us to explain to Max what he's going through (when the time comes) and hope he understands.

I seem to remember when he had hip surgery that he slept alot through the recovery time so maybe that is what he'll do again.

I know I really don't need to dwell on this at this time being it won't be for a year or so hopefully but.....

Max gets molded for his new TLSO next week. Then the fitting comes after that which is all day long UGHHH.

Other then that we haven't been doing much to write about.

Thanks for the guestbook entries with your thoughts and prayers for us.

They really do make us feel better when we read them.

Lisa

Thursday, July 24, 2008 9:21 AM CDT

Good Morning,

Just thought I would quickly update.

Max had his ortho Dr. appt yesterday it was a difficult appt to hear which I kinda thought would go that way but was hoping not.

Max's spine has gotten worse as far as the 2 curves he has.

It's really gotten to be an "S" shape now and the degree it's at has progress quite a bit.

It's degree is in the 69, 66 from low 60's degree angle last year.

The TLSO that we have been using on him where in hopes to slow down the curving so that he could grow to his fullest but his Dr. said that he didn't think Max would get there before needing surgery on his spine.

So were having one more TLSO made for him hoping to keep his curve where it's at (if it get's to 70 we do surgery, if it gets to 80 degree curve there's no surgery cuz it'll be to late to pull back his spine in place).

If we can keep his curve where it's at with this TLSO we can wait a year before surgery and let him grow some more.

Max is growning but not in the right way with this curve. Being he already had these curves his spine is curving more as he grows.

His Dr. said he knew this would happen and was only hoping it wouldn't happen fast or soon so that Max could grow to his fullest.

I do believe that Max has scoliosis cuz of the baclofen pump to keep him loose and help him from that terrible posturing he was doing in the beginning and would have other issues if we didn't do that at the time we did.

But on the other hand, maybe I should have been more aggresive in having the pump turned down and had it removed seeing I don't feel he needs this pump anymore and he's loose enough on his own.

Not to say Max still wouldn't have issuse with his spine cuz he has no muscle tone anyways but maybe he'd have alittle more with out the baclofen.

The surgery would be where they place 2 rods on each side of his spine and then pull the spine back into straight alignment.

Sounds terrible and Max wouldn't beable to roll his back and would have to be careful of twisting his back.

He would gain some inches in height in his truck area (cuz the curves would be straighten out) but once the rods are in place Max wouldn't grow there anymore but his legs and arms would still continue to grow.

We wouldn't have to deal with a TLSO anymore (which I admit having them made is quite the ordeal and just a pain in the rear cuz Max never seems to like them or they never fit quite right)

His heart and lungs won't be compromised by his spine being in the way and of course would avoid future issues.

I'd be able to buy him clothes that fit him and not 2 sizes bigger and then not fitting when he doesn't have his TLSO on.

He'd sit in his chair way better.

I'm trying to convince myself this is ok.

I cried so hard yesterday and all day and at work off and on (I know my building still have some dirty on the floor cuz I couldn't see through my tears to vacuum)

The surgery is like 6 hours long and recover (internal) is like 4 months.

But hopefully that won't be til next year and maybe longer if some miracle happens where his spine for some reason can get somewhat better.

Our little boy has had more surgeries in the last 7 years then the average person should have in his life time and it just breaks our hearts.

AND every time Max needs some kind of surgery or is having a rough day with seizures or what ever, that terrible day comes back into my head playing over and over again.

After being told so many times in the begining to forget about that day it's done, over, in the past, move on, I think oh how the heck can we move on and let it go and try to forget when everything that Max needs is all because of that day.

I keep thinking that Max has gone through so much already, why can't he just be. You think the worst was over way back when and we just need to deal with those stupid seizures. Which he has gained 5 lbs in a couple months so I think his meds are off and he's having more seizures.

Well, I know I haven't had much to write in a long time and this is something I wasn't looking for to write about and hoping it would be of uplifting news.

And I know in the long run Max has maintain a very healthy life for the most part.

Just the thought of surgery once again.....

He's one strong little man, I'm so scared and hope he keeps on staying strong.

I haven't asked for prayers in a long time but guess I am asking again now.

Thanks for all the support for so many years. I know I haven't said that either in quite awhile.

Lisa, Jim, Spencer, Maxwell

Tuesday, July 15, 2008 9:44 AM CDT

Morning,

Boy the summer is going by fast.

All the hoopla that comes with summer is almost over so when you think about it, school starting is just around the corner again.

We haven't done much of the hoopla this summer.

Jim and I have our softball games that we've been playing.

But we really haven't done much other than that as far as doing the different town's celebrations that go on around here.

We took Max out to Grandma's camper last Saturday.

It was a really nice day for it.

Of course Max slept for most of the time.

Oh well, he knows he was out there cuz he was awake up til we got him out of the car and laid him down on the deck.

On the way home he (of course) woke up.

I had to laugh cuz he was having one of those types of seizures where he looks from left to right to straight ahead and his lips were moving like crazy.

And he would get a smile on his face through out the seizures.

I told Jim and Spencer that it looked like he was having a conversation with people the way his lips moved and he was looking back and forth and smiling.

He also looked like he was lips syncing to a song that was on the radio. His lips moved to the words.

So it seemed he was in a happy place anyways and having a good time with all the smiles.

But they did go on little to long and thought maybe he would need his valium but the nurses didn't call me about it so I'm assuming he didn't need it once he got back to Sugar Lake and ate something.

I think next time we'll bring Max home and see if he stays awake for us here LOL.

Lisa

Monday, July 7, 2008 9:50 AM CDT

Morning,

I hope everyone had a wonderful 4th of July.

Our's was different that's for sure.

Last Wednesday as I'm all confused on what day it is and trying to figure out when I'm working my jobs between the activities that we had going for the holiday, I get a call saying Max is really sick and can't keep his oxygen level up to 90.

So, I had them put some oxygen on Max, called the on call Dr. and she said that was good and if he can keep his level up to 90 with less the 4 liters of O2 then he should be fine for the night and have him see his Dr. in AM.

I Took Max in the next morning and they put him on antibiotics and some allergy pills.

He's got like a sinus infection.

He's doing better now but was up til 4am last night. So the nurses are letting him lay low again this am.

I really wanted him to get up and in his stander being he's feeling better and should start moving around some more.

But, they'll try t his afternoon.

Andrew and Sara's wedding was really, really beautiful.

It was a gorgeous day (hot) but at least no rain.

They wrote their own vows and I don't think there was a dry eye from the women there watching.

Oh, and the house on the hill from Karens were having a party and they turned their loud music off for the wedding and then they watched the wedding from the hill and when it was over they all hooted and hollered and clapped. I thought that was neat.

Some one up there also had those wonderful fireworks that they lit off throughout the evening.

So, back into the swing of things now. We did finish the weekend off with things we were invited to because we thought it would be nice to stay home but, kinda now wish we had did one more gathering before the weekend ended but oh well.

I'll get some new pics up another time when I have more time.

I have to get my head straight and see what's going on for the week and get bills paid UGHHHH.

I'm going to run out and see Max tomorrow and hopefully he'll feel better by the weekend to get him out and about some where.

Lisa

Wednesday, July 2, 2008 8:00 AM CDT

Morning,

I had to get up way to early because I got a phone call at 6:15am.

I usually lay there (at first and even if I hear the phone) complaining who the heck would be calling this early in the am.

But I did get up thinking always first that it could be Sugar Lake calling about Max. He was some what congested yesterday.

But it wasn't them it was Jim calling with a flat tire just outside of Buffalo (needed some things to fix the flat)

So, all is good, Max is ok and Jim didn't crash.

Came home and said a extra prayer for that one.

But other then that not to much to update on.

Been busy with work being the holiday week and extra jobs.

The biggest event for the week is that Max's cousin, Andrew is getting married on the 4th this week.

He's the cousin that just had the twin girls with his fiancee, Sara. The twins are soooo cute. I should get a pic and show ya.

Other then that not much to update. Max is doing fine and chatting his chat with us when we see him.

Hope everyone has a safe and joyful 4th of July.

Lisa

Wednesday, June 25, 2008 9:29 AM CDT

Morning,

I was going to update earlier this week but decided to wait til we saw Max last night.

Jim, Spencer and I went last night to see Max cuz we haven't seen him for a week being we were gone.

It was nice out so we took Max out for a stroll but was way to bumpy on the gravel road with his wheelchair so that's got me going today to look into stroller like his old one he's out grown and see if we can get one through the county being they are over a thousand dollars for one.

It's just to hard to take him places where there's no pavement with his wheelchair. And we like to take him to that park by Sugar Lake that has the trails in the woods.

Max didn't talk to much to us yesterday. He did alittle more right before we were leaving.

But he sure did look at us when we walked into his room. Spencer and I were talking to him before Jim came into the room. You could see Max looking towards the door way waiting to see his Dad cuz he could hear Jim talking in the other room. He would look at Spencer and then hear Dad's voice and look towards the door way.

Thought that was interesting.

But I told Max that we're getting back into the swing of things being we just done with a busy week and taking Spencer and his friend to the Dells and that we'll have to take Max somewhere special this summer.

So, yeah we went to the Dell's and it could have been warmer weather like this week is.

I put some pics up and as I was looking at them I'm disappointed that we didn't take more. Guess that's my fault cuz I always depend on Jim to take them and I think he's sick of doing so LOL.

When we got there to start with we had reserved a room at a cheap place "Value Motel" that's with the Rome hotel. Well when we got there I swear it was the "Bates Motel" from pysco.

So, we upgraded to the Rome hotel and the boys were real happy with that and even Spencer gave me $100 of his money to do so he was so gratful and I was willing to accept LOL

It was a little difficult having fun cuz Spencer's friend didn't like roller coasters and liked the water park and Spencer was the opposite of course.

So, I told Spencer he had to do the water park with his friend being he asked him to come (and he needs make sure his friend has a good time too) and I would do the roller coaster with him.

Jim wouldn't even do the roller coasters cuz they are all wooden and do jerk you around.

I did make Jim go on the one roller coaster that goes under the parking lot and comes out the other side and then back undergroud again.

It was different. If you go to Youtube and type in Hades rollercoaster you'll see people who have video taped this ride. Pretty crazy. The first time Spencer and I went I didn't realize it was the one that went underground and the inapporpriate words were comeing out of my mouth that's for sure. LOL

The next 2 times I had a blast.

We also saw Lake Dalten and I wish we had taken pictures of the lake. We forgot before we headed back downtown for the jet boat ride so we got pics of where it opened up and drained into the river.

We never seemed to rememember to bring the camera (should have just left it in the car. could use a smaller one that fits easier in my purse or pocket)

But it was just amazing to see this huge lake totally emptied.

The stories we heard just blew us away to about how it happened and that it took only like 2-3 hours to drain out.

So I think if we every go again that we'll find a cheap motel (NOT THE BATES HOTEL THOUGH) and then spend the money on doing different attractions instead of being stuck at the same place for 4 days.

We've never been there so didn't know what to expect and thought that this park would be really fun for the whole time but the kids got bored.

Lots of go kart rides too but the first one I went on I really, really didn't like so I didn't go on the others.

I'm no good at driving them and end up crashing (not my fault though others crash into me first) and then I end up the last one coming back in with like 20 people waiting to go and 19 waiting to get out of their cars to get going to more rides. So

So of course here I come Putt putt putt with all these heads turned looking back to see who's the one holding them all up LOL.

Well that's that for now. Stay cool.
Lisa

Tuesday, June 10, 2008 9:36 AM CDT

Morning,

I know I haven't written in awhile but nothing really new to talk about.

Max's is healthy and the Dr's appts a far and inbetween.

We have one coming up in July, his ortho.

This weather has been so wishy washy that it's hard to get Max out and about.

I mentioned that Max is healthy. I hope it stays that way cuz I thought I had allergies going but last night it did turn into a cold and Jim and I had just saw Max last night after I got home from work.

And of course I kissed him up like crazy. So, he may get my cold.

We have next week off for vacation so we're trying to make some plans with Spencer and a friend to go to wisconsin dells.

We've put that off also so now we are trying to find deals and hoping where we want to go aren't booked up.

I'm not camping in this weather either so it's hoteling it.

We did get a letter in the mail the other day saying that Max's pump (we had it put in a year ago the newer one) there's some that have a piece missing in it.

Well they figured the one Max has is fine cuz the med that is left when refilling it is the amount that should be in there and Max hasn't had any physical signs that the pump isn't working right.

Well, Spencer pasted 7th grade with flying colors.

He's been thinking of try football this fall. It would be the real last chance he should try out for it if he's going to.

But he's been encouraged by 2 teachers that are coaches and a few of his friends.

After seeing him in track and how well he throws and runs (which Jim and I are quite surprised at well he runs after watching him when he was little or I mean younger cuz he ran so goofy LOL)

Well, one minute he's going to then the next he doesn't want to. He said he doesn't even know how long he'll do track. He really would like to work on his studies and sometimes track interfers with that cuz he's after school to long.

Oh well, I guess that's more important and I'm glad he would like to keep his studing up.

Well, I should go and see which hotels can rip me off for a few days. LOL

We should get Max home this weekend before we leave and I'll try and work some excitment out of him LOL. Yesterday he was kinda blah but awake (always asleep during the day) but he looked confused yesterday for some reason. Didn't talk much unless I bear hugged him.

But his nurse said he was eating orally great and each meal.

Ok, stay warm HA HA.

Lisa

Wednesday, May 28, 2008 7:54 AM CDT

Morning,

I hope everyone had a nice Memorial weekend.

We had a some what busy one.

We took Max out to Grandma Joanne and Grandpa Ralph's camper in Howard Lake for the day.

He seemed to like it and then fell asleep for the rest of the day there.

It was super busy there that weekend. Lots of people to look at LOL

Then we got Max in his wheelchair and walked him around to the little store they have there.

Of course you know Max, once he wakes up he has tons of seizures.

He had a super loud one right in the store. It was one of those terrifying looks on his face with the scream.

Felt bad for him cuz he looks so scared. Haven't seen one of them for a long time.

Felt sorry for those in the store too. As we just blow it off and talk to Max and try to help him out of it as soon as we can they must think "my gosh, help that poor boy".

People I would think aren't used to hearing such noise come from someone.

And we just stand there treating it like nothing cuz we do know he has them often and can be loud.

Spencer had a friend over that day and night so he didn't go with this time.

On Sunday we went to Jesi's 18th birthday party in Maple Plain so we missed the storm that rolled through Buffalo.

Maple Plain didn't get much but wind and rain and the temp dropping so much I hated it. Just when it was getting to were I like it.

We got to see the little Twin girls. Oh my GOSH are they adorable. Very petite and so cute. Though they are growing.

Then on Monday our neighbor had a fish fry with his family and we were invited to come over too.

So other then that. Now this week will fly by and the weekend will be here again.

And of course we didn't take and pictures this last weekend. We bring it along but forget to use it. It hasn't been working the best either. All the pics come out blurry for some reason. The photographer?

Spencer will be done with school soon. Next wed. last day.

Shoot after 8:00 already. Better go and get some things done cuz I slacked on house duties last weekend.

Lisa

Thursday, May 15, 2008 7:58 AM CDT

Morning,

Once again I don't have a lot to say. Most everything is the same.

Max does his talk with us. Yesterday he was awake for me when I got there but he seemed to have one seizure after another.

But he tried hard to concentrate on me and our conversation.

We keep thinking one of these weekend days it's going to be nice to bring Max home to hang out outside, but the weather hasn't been cooperating for us.

Spencer has been doing great in Track. He wants to get a full suit (jacket and all) for his orchestra concert so we have to do that this weekend.

We haven't seen Andrew little girls yet either. I heard they're cute as a button though.

We went to a benefit last weekend for a friend we know who has cancer. He and his wife have 2 boys, one of the boys is in Spencers grade. We are hoping and praying for their family for remission for him.

So, that's about it for now. Max had his pump refill and we turned his pump down some and all seems fine.

He doesn't like to stand in his stander though I'm really thinking. I was trying to do some ROM on him and he would just buck me and resist stretching his arms.

So if his teachers are trying to stretch him when he's in his stander and say his arm has lost range, I'm thinking he's fighting them more so and his range is better (I know) when he's laying down.

take care and I'll try and make something happy/exciting happen the next time around LOL.

Lisa

Tuesday, April 29, 2008 7:52 AM CDT

Yup, time sure is a flying. I thought I had updated sooner then I realized.

I had to read what I wrote last to make sure I don't repeat myself and I guess I don't have to worry about that cuz it's been awhile.

So let me read my notes I wrote down to see what I was going to tell you.

Lets see, One day when I was out to see Max he was all gunky sounding in the throat so I had made him cough and he was fine after awhile and when I did some Range of motion on him in his tumble form chair and on the floor. I actually slowly rolled him on his tummy.

I told him I was going to and did some things with him while on his back and then on his side and then "FLIP" I put him on his tummy.

I think he was surprised and kinda thought it was fun cuz he had this pleasant look on his face. He did well leaning on his elbows and stayed like that for awhile.

But it sure pooped me out. He's getting so big that it makes me just sweat moving him around LOL

But earlier before I did ROM on him I was telling him to cough on his own. This is going to be hard to explain but I was pushing on his stomach telling him to cough you need to use your stomach muscles. And I would push on his stomach and make a "UH" sound.

To make a long story short, Max was pushing with his stomach and then would like sigh oh make this small "uh" sound.

Max's nurse and I thought he was trying to ....you know... having those kind fo stomach cramps cuz that's what it sounded like after he gets a suppository.

But then I realized that he was copying me when I asked him to try coughing and use his stomach muscles and push and well you know what I mean.

Like I said it's hard to explain but I really think Max was copying what I was doing and telling him to do.

I saw Max yesterday and when I asked him to say love you mom (I guess this time I said to say I love you) he did his 3 Uh Uh's right away. I didn't even have to coax's him to say it. I just said that I haven't heard him say I love you yet and right away he did his 3 uh's.

I really loved to hear that from him.

Other than that we still need to get our van fixed (ramp and door). I called them and they tried to talk to me about what could be the problem and I'm not car person so I have to have Jim call them and see if they can fix it over the phone and if not let Jim set up a time to bring it in.

Wish the weekends would get nice out so we can get Max out. We'd have more time to do so on the weekends.

Jim and I went to one of Spencer's track meets. It was here in Buffalo so of course easy to attend. I think today they go to St. Michael. Then Cambridge, Princeton which are a ways away for me.

Spencer received ribbons for 1st place in disc throwing and 2nd place in shot putt.

Just missed placing in 100 dash meter by a second in time.

So, were proud of him and that he likes track and is doing well so that he stays interested in it.

Also I was going to say that our nephew and his fiance had twin girls a couple weeks ago.

And of course I forgot their names. Kyla? I think is one of them. Sorry about.

I should of put a pic of them up on the site. I had a couple in an email.

Anyways, Sara did really great in growing them LOL. The girls were each a little over 5 lbs and 19 in long. So, as far as twins and born early they were good size.

Good thing Sara and Andrew are young cuz boy if I had twins at the age we had kids, I think I would still be in bed sleeping. LOL.

Well, that's my update for now. I know I haven't put pics up (new ones) in awhile. I haven't taken any lately.

We also did get Spencers room done downstairs. Just need to move him in now down there.

Have a good week
Lisa

Saturday, April 12, 2008 6:55 PM CDT

Hi,

I know I haven't updated in awhile but I really haven't had anything to update on.

It's been so busy around here that we haven't been doing our regular visits with Max.

Jim had last week off and I had a 4 day weekend and so we were (still are) working on Spencers new bedroom that's going to be downstairs. It's looking super nice. Nices room now in the house LOL.

We totally forgot about getting the van ramp door fixed. So, Max hasn't been horse riding and he hasn't had any appts that we've needed the van.

Jim has been going out to see Max in the eves and of course Max is wide awake and chats with him.

When I go out during the day he's always sleeping. Jim and I went out there together last Saturday about the time I usually go out there and of course Max was sleeping.

I said to Max " show dad what you do when I come to visit you." I said to Jim see. That's what he does....sleeps LOL

Of course I talk to Max and he makes his noise and his lips move and then he's out like a light.

So last night when I was working, I didn't get a chance to see Max this week (had a day construction cleaning job one day and then just usual errands and R & R, School canceled on Friday)

ANYWAYS........I just couldn't stand it anymore not seeing him and cried while I was working last night so I quit doing my jobs and ran out there around 6pm. Cuz I really wanted to go out there while he was awake for once.

Max had just had his bed bath and was laying in bed wide awake and I said "Maxwell, mom is here to see you in the EVENING" He turned his head and looked right at me.

It was like he was so surprised to see me. I told him I come out during the day but he's always sleeping.

I then went over to the other side of his bed to get him to turn his head and look at me on his right side. His turns to the left easier.

So I was telling him to turn his head to the right (his eye's would look but his head didn't move much) and look at me I said " here I'll give you a head start, by starting to turn his head for him" I just started laughing at myself for asking him to turn his head and that I would help him with a head start. I noticed that Max went in to a seizure smile.

I said to him that was funny wasn't it.

Thought it was appropriated that he went into a smile seizure after that comment.

So, I turned on a video, that chef mouse one, and we watched half of that together. I laid down in bed with him and we got cozy mozy. Told him we should have some popcorn.

He talked off and on to me and I had him "uh uh uh" Love you mom. It took him awhile but once he got the 3 uh's out he kept saying them. :o)

He's good at repeating the Uh's and the number of times I ask him to say them.

Jim got him to say mom with his help. Max would be making his UH noise and Jim would close his lips and then let them come open again and close agian so it would sound like he's saying Muuuum.

Oh and one more thing. Jim got an award at school for "Child-Centered Excellence". They're having a Gala in May honoring those who received the award in their group and also some other awards for various things.

We've always known how much Jim is appreciated at his district. All those years of the teachers thinking of him at Christmas with all sorts of gifts and goodies and also on his birthday.

And especially after Max's accident right up til today so many people still ask about Max and let Jim know that they keep him in their prayers and last year the fundraiser for Max's horse riding that they did.

The award is just the icing on top of the cake to say.

It really makes a big difference when going to (and doing your job) at work when your coworkers let you know that your doing a great job and that they appreciate you.

We're proud and happy for you Jim. We love you.

Lisa, Spencer, Maxwell

Monday, March 31, 2008 11:54 AM CDT

Hello,

Sorry I haven't updated in so long. Been really busy with work.

Spencer had spring break last week but we didn't do anything really (he hung out with some friends) But like I said I had tons of extra jobs to do so it worked for me cuz I was able to work late in the eve and sleep in, in the mornings.

Jim has this week off and I was able to get a 4 day weekend coming up here at the end of the week.

We're working on and will finally finish Spencers bedroom downstairs for him. He's been waiting to move down there and I'm kinda excited cuz then we can rearrange some rooms upstairs.

I hope everyone had a wonderful Easter.

We had Max home for the day and was planning on making a ham but when I looked to see how long to cook the ham, I noticed the date of use by or freeze by and it 2/8/08. So it was already a month past this date.

Jim was even to leary to cook it and he's one to not worry so much about things like that.

So, I didn't have a back up plan really and I ended up giving Max like 4 choices for a snack (without have to pull the blender out). He seemed to like his cheese and crackers I gave him. (the cheese was the creamy kinda already).

And some yogurt he ate.

Other then that I don't have much to update on. I tried to have Max do some things (looking at) on the computer but he was kinda busy we found out later with his grunts and that. I guess I wish I would have did the pictures thing with him to ask him if he needs to use the bathroom and see if he would have looked at the right pic and use the commode with him.

Oh well.

Hoping also to get Max's van fixed cuz we've put off horse riding til we do.

Spencer is to start track this week but with the snow flying around I wonder what they'll do. Maybe indoor training.

They've already put off starting track cuz of the cold weather a few weeks ago.

I guess I'm just grasping for things to say here so I should go. I wanted to go out and see Max today but it's getting late now. I miss him. I didn't see him last week cuz of work but Jim got out there.

I will get out there tomorrow cuz I need some kisses from him. :o)

Lisa

Monday, March 17, 2008 10:46 AM CDT

Wow, seems like I just updated and here's it's been ten days gone by already.

And yet I still don't have anything really to write about.

Spencer has a sore throat today so he didn't go to school.

I'm not taking Max to any appts til we get the van fixed so I need to call Rolex and set up appt first week in April when Jim has off work so we can go together or seperate cars if need be to leave the van.

I saw Max last week and of course he was falling asleep so I did some range of motion on him. He talked to me in his sleep some and the was totally out.

But when I told him I was going to go and see him later he started his talk again in his sleep. Jim noticed this too that he'll start his talk when you mention that your leaving.

Joanne and I went to Andrews and Sarahs baby shower last Saturday. I guess I forgot to mention that Jim's brothers younger son is having twins with his fiance.

Everyone is very excited for their arrival (girls) at the end of April or before I would guess cuz she's (Sarah) is getting big and I'm sure there's not much room for the two anymore.

So, St. Pats day today and Max's birthday on Thursday this week and Easter on Sunday. Nothing like cramming in 3 special days all in one week.

Ok, St. Pats day isn't such a big deal for us but....

We're going to bring Max home On Sunday for his Birthday and Easter. Jim and I will have to lift him in the van or do the van manually if Jim can loosen the handles he tighten so tight that I can't LOL.

Max is going to be 11 years old already. I can't believe it.

Well, that's about it for this week. I'll update after Sunday and I'll have some pics of Max's birthday for ya

Have a Blessed Easter,
Lisa

Friday, March 7, 2008 11:03 AM CST

Morning,

I finally took some new pictures of Max and put them on the site.

Of course Max was starting to fall asleep while I was there so we didn't do much.

He did try and stay awake for me and talk to me. I was having him Make different sounds for me and he actually copied my sounds.

His lips where a movin' and I said "Max, your lips a just moving away there, I know some day your going to say something, you just have to move your tongue and I made this blah, blah, blah sound and asked him to do so and he made the same sound but with his "uhs". He dragged his "Uhs" like my sound.

I made some other sounds and he did mimick me.

I told him he was very smart doing so.

We didn't make it to his appts this last week other then his Dr.'s appt. The van's ramp quite working on us while down in St. Paul so Jim and I had to lift Max and his chair into the van.

But we had a good nuero appt. Dr. Wical was so happy to see Max awake and he showed her that he does pay attention to whoever is talking.

She commented on his facial expression and his eye movements.

Saying that Max really knows what going on around him.

We talked about Max's eating and the things he does to show that he doesn't want to eat anymore (looking down to the right)

We told her about when one of the other kids at Sugar Lake crys out that Max gets this worried look (eyebrows crease down) and he looks around to see where the sound is coming from.

So she got to see Max finally as we see him. He's usually sleeping at her appts.

She said his weight is fine for him and that he is not on the skinny side. Joanne and I talked that they should make a growth chart for kids like Max cuz even though he's only in the 25th percent tile for weight to height he looks fine.

If he was any heavier he'd look to chunky.

Oh we also talked about his getting that diastate before thanksgiving and thought Max's seizure were better after that for a few days after.

So we are trying a dose of valium on Thurs eve and Sunday eve to see what happens.

So far today they said Max slept through the night but when waked in am he threw up, had tons of seizures and was sleeping again by 10 am.

Now we don't know if he's getting sick like everyone else has been or if it was the valuim.

I guess we'll try it again Sunday night and see what happens Mon. morning.

We are to give it 2 weeks and see if we see any changes and decide if it's working or not.

I also asked her about Ambien (that sleeping drug) that I've heard has been waking brain injured people up at different stages.

I know some of the ponds parents I've talked to have tried it on their children and it's shown to have given them some improvment.

I just didn't think our Dr.s would go for it but to our surprise Dr. Wical had said she had heard of it helping people out and she said if it can give some kind of miracle to them in anyway why not give it a try.

So if the valuim does or doesn't work in a couple weeks we'll try the Ambien.

She also upped some of his seizure meds to help with his seizures.

I also was playing with Max with some neon colored cards with "X's" and smiley faces on them.

I asked him to look at a specific one out of the two I was holding up and he looked at exactly the one I had asked him to look at.

He did it consistantly too so I of course gave him bunches of kisses for that.

I was going to go out there today but he's sleeping and I slept in late cuz I've been working til midnight the last couple of nights and I'm just beat.

Jim was out there last night but I haven't talked with him to find out how things went for him.

I hope the pictures went through. They don't always work like I would hope they would for some reason.

Ok, have a warm weekend. I'm so sick of this cold weather. I can't wait for spring.

Lisa

Thursday, February 28, 2008 8:48 AM CST

Hello, it's me again,

Thought I would update quickly. I'm putting off doing what I should be doing LOL. The usual, cooking, laundry, etc.

But we did make it to our appts this week. Therapy at Spot should be wrapping up soon here in the next week or so I hope. Kinda sick of going there LOL.

I'm also anxious to just go out and see Max for the pleasure of it and not just going to appts.

I would like to start using pictures to see Max make some choices and do my own stretches on him and get him on his tummy and stuff.

We went horse riding yesterday and rode Pete the big(ger) horse. Max sits up there so high it's kinda scary. I mean I'm looking right up his nose LOL.

He did well. He gave us some pleasant looks. I noticed that when they had him bend over to pet Pete's mane, Max's mouth started to move and he had this look as if he was going to speak or laugh or something. It was a different expression.

I was thinking maybe bring Max home this weekend but got a couple calls re: work. Construction cleaning job Sat. and two extra regular job for the weekend so I'm full of work this weekend and dont' see me having a day off between Friday and Sunday here.

Guess we'll try for next weekend.

Spencer had his conferences this last week and his teachers just couldn't praise him enough for how well he's doing in their classes.

They've said thinks like, He's always asking questions and not just your typical questions, he's always thinking outside the box when it comes to some of his questions. Wanting to learn more, like beyond what is just being taught.

He has good idea's, good working ethics, does his work on time, hands them in on time, organized (WOW).

He's getting straight A's and even in gym class now too.

We just couldn't be any prouder of him. He's making this parenting thing pretty easy (knock on wood).

So that's my update for this week. I keep thinking I can't wait for the weekend to come but the remember I have to work so I guess no need to be excited for the weekend. HA HA.

Take care,
Lisa

Saturday, February 23, 2008 10:02 AM CST

Sorry I haven't written in awhile.

Spencer and I have been fighting the flu this last week. Just when I think I'm getting better, the next day I'd feel like a truck hit me agian.

Spencer is doing better. He had gone to the Dr. for his physical for track and she checked him out for his illness and said the flu is going around like crazy and to just lay low and it'll pass.

Of course last week we didn't do any horseriding or therapies cuz of the cold and my being sick.

Max did well last time we rode. Once he was on the horse and did his stretching, Shari picked his head up and here Max was SMILING!!! It wasn't a seizure smile cuz usually his head would come up itself and he'd make some noise along with it.

Max's therapist from SPOT came out to Sugar Lake last Monday to talk about feeding Max and ways to help eat better.

I really want the staff to keep Max eating orally and to REALLY take the time to help him with this cuz it's so important for him physically and mentally. I know he's shown that he likes his sweets when he won't eat his main food but give him something sweet and he eats that.

I would like to see them really work on his mouth with suckers and those infant brush things (forgot what they are called) when he's in the stander. I know they used to but.....

I better stop before I get on my soap box. Cuz I could go on and on about some things. LOL

Any ways. I think I should try and get some things done around the house while I feel up to it. It's been left for the week cuz I tried to do as much of nothing as possible LOL

Lisa

Tuesday, February 12, 2008 8:02 AM CST

Hello,

I was going to put new pictures up but I'm not in my area of this computer. I'm on Spencers, so I can't get to my pictures, though Spencer I see has downloaded some interesting pics LOL.

I'm sure there's some way to get to my pics from here but just don't know how.

Max goes to his therapy today. I guess this new wrist brace that the OT made is actually working well and not leaving Max bruised or red any where.

So, happy to hear that. Maybe now we can get some more range in his wrist and fingers.

We had his triple IP yesterday for school, where we talk about Max with his teachers.

It was a good meeting. Grandma Joanne and Grandpa Ralph came out.

I had asked her to come out to give me support cuz I can get so defensive when talking about what Max can't do and/or what they feel I should do for him.

But it didn't go that way and I didn't cry at all so all was good.

It's hard to talk about Max and his limitations. It's like going over that terrible day over and over again.

I guess I don't see Max as disabled so much anymore. Oh don't get me wrong, I still have those days when 7 years ago goes scrolling through my brain and rolls itself up tight again in the back of my brain.

But Max is Max now. I think only he can progress and only talk about good things about him, for him. There's no bad for him, he's already gone through the worst or worst. (knock on wood I should say)

But anyways, his teachers are pleased for the most part re: Max's range in his arms, legs. And we'll all on the same page shall I say.

We didn't talk to much Re: his speech and vision with his teachers.

When I got there yesterday he sure was chatty with me. Almost like a mad chatter. It sure seemed a different tone to me and more aggressive in getting his UH's out.

The Teachers noticed that Max stayed awake the whole time while we talked. He was alert and looking around. I hope they saw him in a different light then when their working with him. He did have a bunch of seizures which brings to mind I need to call his neuro for an appt.

I printed out his pictures to work with him on those but I brought the wrong ones with yesterday.

I'll bring them to horse riding on Wed.

Gosh, I thought there was more I was going to say but I guess not.

Oh well, I guess I'll update next week after we have his other appts.

Take care,
Lisa

Thursday, January 31, 2008 8:39 AM CST

Hello,

Well this time I really don't have anything to much to say.

The weather being so cold, we haven't gone to therapy or horse riding.

I had to cancel therapy cuz of a construction cleaning job and will cancel this Tuesday also for same reason. We usually do these jobs on the weekends but this one is rather small and a hurry up and get it done deal.

Construction cleaning jobs don't come around as often as I'd like so when they do I offer to work them. I actually like it better then just cleaning my commercial jobs every night.

Hoping to get to horse riding next week though. I hope this extra cold weather is done and over (ha ha, yeah right)

I went out to see Max on Monday and he was sound asleep. So I took a bunch of pictures of various things so that I can use them for his eye gazing board to see if he can make choices.

I took pics of like his bed and some of the recliner (message chair and his tumble form etc.). I took pics of like the bathtub, even the toilet to see if he can let us know he needs to use the bathroom, and some pics of like a bowl and spoon for eating, a pudding cup, yogurt etc. TV, CD player also.

While I was doing this I would go and try to wake Max up and talk to him and he'd just lay there (eye's shut) making his "uh,uh noises and his lips would quiver as if to say, "leave me alone I'm sleeping" LOL.

He did that quite a few times until eventually he just wouldn't and went into a deeper sleep.

So, other then that I don't have anything to say. I'll go out tomorrow to see him before the weekend. We were talking about bring him home next weekend and I'll have the pics printed, lamenated and then we can play eye gazing games with him :o) I still have to take some pics of the animals and family.

Oh, I put pics of this possum that's been hanging around our house.

I threw out some trail mix that I didn't like that had nuts and dried fruit, candy in it, for the squirrels and the next thing you know there's this possum out there having a meal.

We took a bunch of pics (of course to many for just a critter LOL) But I don't think I've ever seen one before other then the ones flat on the roads LOL. Their cute in a odd way.

Hope everyone made it through the cold with not problems.

Lisa

Wednesday, January 23, 2008 8:19 AM CST

Morning,

I wanted to update cuz yesterday at Therapy was a pretty good day for Max.

Max was to show Speech how he eats orally and I have to admit Max can do better then he did but he did show his therapist a good bite and swallow a couple times.

She also noticed that she didn't hear any raspy sounds from his throat meaning that he did good swallowing and not letting it just slide or sit in his throat.

I wish he had done better but he was sleepy and his seizures did get in the way.

She also noticed that he did alot of his verbal noise that he makes.

I told her that he does that when he eats and keeps making his noise after words sounding like he's just stuffed from eating.

She was kinda wondering why he makes so much verbal sounds at this time and I guess I never thought about it.

I mean it is weird so now I wonder if he's not liking it or not liking the food or what? Or is he really liking it and is trying his best to eat orally and saying so when we keep asking him to open his mouth up.

Who know's. Maybe I could figure out something with pictures to have him look for the anwers.

I had to laugh cuz when Max was so verbal while eating, he makes a little higher pitch noise when he's going to make a hicup or burp. So when he made this higher pitch sound, I said "oh he's going to hicup or burp" and sure enough he did kind of a hicup/burp. The therapist was luaghing saying "wow, you really do know your boy". He does this sound everytime I noticed before a burp/hicup.

Then we saw his OT therapist and we video taped some of his ROM for his arms that he suggests to help with that shoulder and his neck and the other shoulder too.

Well, he wanted to get Max on his tummy and have him lean, rest on his elbows, you know kinda like when you'd sit and watch TV (ok not me anymore cuz it hurts my back LOL) but so we got Max on his tummy and bent his arms (easily) so that Max was up on his elbows and I was holding Max head up.

The therapist said he'd get Max's head while I video taped this position and just then Max had a seizure so his head went way up and stayed there til the seizure was over.

I had to laugh saying, "well the seizures do come in handy once in awhile" but just then Max's head dropped down between his arms to his chest.

So, we video taped for awhile talking about this and the therapist let go of Max's head (thinking it would drop down for awhile) while he repositioned Max's legs.

I noticed Max's head stayed up. Not way up but level with his shoulders, back.

I said "oh Look, Max is holding his head up and he's not having a seizure" So, we encouraged Max and praised him for this and to keep his head up. I actually got it on video but I hit some button and so it's blurry but you can still see what he's doing.

Then after a half a minute or so Max's head went down.

Ya know we used to put Max on his tummy alot, I know I've done this when going out to sugar lake sometimes but the nurses had a hard time keeping up with it being they couldn't get him on/up from the floor but with the table now I hope that 2 of them could do this for him.

I know it's not easy and Max is getting bigger and heavier to work with but, best to keep it up now and hope he gains some head control so when he does get bigger and heavier at least he'll have some of this head control to help with down the road.

And it would make his eating so much better with some head control and many other things physically.

I'm glad it looks like the weather is going to get up there in temps again come this weekend. Max isn't going to horse riding today. Heck I thought it was cold last week and didn't take him. It's way colder then last week. Wish I had taken him last week.

Spencer takes the SAT test this weekend. So, we have to get up early and be at the Wayzata high school at 7:45am.

He just finished tech ed and made a wooden shelf, now he has F.A.C.S. (family and Consumer Science. Gee, I didn't know that the things I did around the house (and shopping) was considered a science LOL) (home ec is what we used to call it. Cuz it was just girls who took that class and the boys to wood/metal shop)

So this class should be interesting and what he has to do at home for homework.

They also did yoga in gym class the other day. Boy I sure would have liked to have been a fly on the wall watching my 6'2" tall boy doing yoga LOL. I've only seen him in the computer chair position LOL

So, that's my update for now. I'm excited for my boys and all that they've learned and how well they are doing in their daily activities.

Stay warm,
Lisa

Monday, January 21, 2008 10:36 AM CST

Morning,

I noticed I haven't updated in awhile. I guess I don't have anything really to say.

I didn't go to Max's appts last week cuz of the cold and here it is even colder this week then last week.

Shoot. I just hate taking him out in the cold and then wondering if my van will start where ever we may be. It didn't start this weekend til we pulled it in the garage and warmed it up.

we did go to his pump refill appt. We didn't really do anything with his pump re: lowering the dose. We did change it so that he'd get more dosage in the morning for 3 hours and then less in the daytime so we'll see how he does with that.

It's like lowering it as far as that goes in the day time.

So, other then that, nothing new.

I just heard from my sister in law, Laurie, that our nephew Ez is coming home from the service next weekend.

I havn't mention Ez in awhile. He just hates the service over there in Korea. It'll be nice to have him home and safe. I'm sure he misses his daughter so bad and his family.

Well, I'll let ya know about his appts and how they go this week if I take him LOL. I just feel bad I didn't take him last week thinking it was to cold then. I hate to miss 2 weeks.

Stay warm
Lisa

Thursday, January 10, 2008 12:41 AM CST

Good Afternoon,

Having a nice snowfall today. Kinda nice to see new fresh snow being it's only Jan. any ways. Now if it was April I wouldn't like it. LOL

Spencer goes snowboarding after school today and he hopes it keeps snowing so he can snowboard in the snow. He took a free lesson and is doing well he said. We're glad he took a lesson. Gives him more confidence and will keep up with it. (Did I mention that already?)

Max has therapy tomrrow but I don't expect much to happen to write about so I thought I would update today after he had horse riding yesterday.

Shari has this new little cat named Tux and I placed him on Max when we got there and this kitty was just loving up Max and laying home him doing his little..liker's...can't remember what they call them....Joanne just told me too.

So, anyways, Joe was home from College, Shari's son that has sidewalked with Max before so we know him well, and I was hoping so much that Max would really acknowledge Joe but Max was having a crabby day I think.

Once he got on the horse he had this look of pain every time we started to ride. Once we stopped he was fine. He had lots of saliva going on and his nose sounded kinda plugged.

He seemed to have more seizures then usual also.

So, in my head I'm thinking maybe he's coming down with a cold (I got one last weekend so I couldn't give him those millions of hugs and kisses that I give hime when I see him :o(

But every once in a while he gave us some good eye responses.

Then Shari said we should have Tux the kitty ride so, Joe went and got Tux and the kitty went for a ride with Max LOL

Kitty was so cute giving me head butts as we were walking and he would sit up and ride so well and then lay down for awhile. We'd put Max's arms around kitty to hold on to him so he didn't slide off.

Then after riding the horse decided to give some kisses and kissed Max right on the top of his head with his nose. Nudged him a few times in his face.

So I had bent over to talk to Max about it and Lady (the horse) decided to kiss me on my forehead.

She gave everyone kisses after the ride was over LOL.

The animals were sure loving yesterday :o)

Shari gave Max a few drinks of water, which he did well with and didn't choke or cough, drank some down really well.

And acouple bits of pudding and that seemed to make his saliva go away. Shari wished she had given him some water before riding.

We've also noticed that Max head control seems to be coming back some. He was doing so well and then we could see he was getting tired cuz his head just went floppy.

I told her I noticed this the last couple van rides we had taken. I was putting the law down to Max saying he has to help me with his head staying up while I drive cuz it's to hard to help him put his head back up when we like take a corner and it falls off his head rest.

I swear he was able to get his head back into place without my help. Now granted his head wasn't so far down that he picked it up. It was just off to the side enough to where he was able to get it back up to look forward.

Oh and Shari showed Max her vacation pictures and he really looked at them when she would ask him to find like her in the picture or find the horses with the hats on....

So it was one of those good rides not so good rides. I don't know what was bugging him while riding. We had repositioned him a few times to see if that helped.

Well it had been 2 weeks of no riding so he was probably stretched to the Max (no pun intended LOL) in his legs there.

If anything exciting happens at therapy tomorrow I'll update on that next week.

Lisa

Wednesday, January 2, 2008 8:07 AM CST

Morning,

Boy did the last 2 weeks fly by. Doesn't even feel like Spencer had off from school the last week and half cuz this getting up early is really for the birds.

So back to the same old routine. Which I guess is ok cuz I was getting confused there for awhile as far as my cleaning jobs all different with the holidays in there and what was closed and what was opened (and changed to weekend openings), extra jobs.

And Max is having to go back to his routine. He's to go horse riding today but I'm really thinking it's to cold to go being -7 here at this time and not suppose to get to much warmer (did I say warmer?)

Then he has his therapy tomorrow. I told him he needs to start really working on his stretches (I guess I need to get the girls at Sugar Lake to learn them first LOL)

And to try and start doing the eye gazing board and get the flash card with choices. He's not seeing his speech therapist tomorrow cuz the schedule changed and so, kinda disappointed in that.

Max did really well at Christmas when we were at Jeremiah's place. We had Max from 11:30 am til 10:30 pm. So he had a big day and only took a small cat nap at home before leaving for the party.

He didn't have any real big siezures (except one at end of night) other wise he was just to busy looking around.

What was interesting was being at Jeremiah's place Max had people all around him coming from the side, the back, up in the kitchen, in front of him.

So, I caught Max turning his head as he was looking around to see where all these people were coming from.

He started to get alittle upset toward the end of the evening and started to get stiff and blotchy red. So, it was time to go.

Once we got him in his chair, he must've known we were leaving and he was fine. Or he just didn't want to be in Jeremiah's bed all alone while everyone was out and about. Though I was in there with him most of the time and he could see out from the room at people.

I was out to see him New Years day and he was chatty with me. Especially when I told him I needed to get going. He wasn't talking to me much then. He started to talk again when I had said I needed to go.

So, I think he's doing well with his alertness. He really seems to know what's going on and can show us this with his eye's or verbal "UH UH's"

Lisa

Thursday, December 27, 2007 10:11 AM CST

Morning,

Hope everyone had a nice Christmas.

We had a good time at Jeremiah's new place in Delano. We actually had enough room to play our dice game LOL.

I think we should get together with Jim's family more often cuz we do have such a good time when we are all together.

We even had a campfire outside it was such a beautiful evening.

The snow was alittle tough getting Max back and forth.

Max did really well with all the comotion going on.

We picked him up at 11:30 and didn't get him back to Sugar Lake til almost 11:00pm.

He only took a small cat nap at home here before leaving to Jeremiah's.

Otherwise he was awake the whole time. He didn't have hardly any seizures (only one big one while laying down in bed).

I was watching Max from across the room (he sat in his tumble form chair almost the entire evening) and being people were sitting and walking around from all direction, Max actually moved his head around to see things and look at people.

So Max must really need something interesting or someone to turn his head like he was doing. LOL.

I figured it's just like we do when we're at home. Someone is talking and how often are you doing something that you really don't stop what your doing and listen to that person. Your walking around going "UH HUH". And or keep on doing what your doing.

Max at Sugar Lake doesn't need to look at the nurses cuz he know's who they are already so well that he just listens to them.

Or us here at home. I asked Max to turn his head and look at me and he probably figures "Why?" Just talk to me, I'm busy looking at something else LOL

Max did start to get stiff and blotchy after around 9pm so we figured it's time we should start heading out cuz the roads may take us awhile to get back.

Once we got Max in the wheelchair and headed out he was fine.

So we are very proud of Max doing so well and when someone, Like I noticed, when Grandma Karen came up to Max to talk to him, he looked right at her and then she walked over to his left side and he looked at her again when she talked with him.

It's alot of work and worries when we take Max out for so long. Once I get him home thigs are fine and some of my worries go away but, we aren't used to doing all that needs to be done for him (which I know sounds kinda bad) but his meds, his positioning, feeding him, his water every hour (which I forgot his water at 9pm, he gets a whole bag at once then) making sure he's involved in what's going on.....Jim and I worry that's he's ok and having a good time.

But I think Max all in all is fine and enjoys just being a part of the famiy and getting out of the house.

Well, now we have the new year coming up. Spencer's birthday is just around the corner and he's going to officially be a teenager (13). Though he's been a teenager since 10 LOL.

At the end of Jan. he takes the SAT test to see how well he does on that. Don't really know why the school wants him to take it. Guess maybe it'll open up more doors for him down the road or to see if he should maybe taking some more challenging classes in school.

He has alot of studying to do for this. The booklet came the other day and lets just say I would never pass the dang thing that's for sure. LOL

Well, I better start my day. With Spencer off from school and my working later in the eves, I don't get up in the mornings like I really should.

I hope everyone has a good time ringing in the New Year but also ringing it in safely.

Take care,
Lisa

Thursday, December 20, 2007 8:31 AM CST

Good Morning,

Thought I'd do one more update before Christmas.

Max has had a couple therapy appts since I last updated and had horse riding yesterday.

I have to try and explain something funny at one of Max's appts last week.

Max wears this bomber hat when we go places and it's really cute on him but on the ride to Spot (his therapy place) his ear flap on this hat was starting to get in the way of his vision and I tried to fix it while driving (and they worry up people using cell phones when driving. Try taking care of a Disabled child while driving LOL).

Any ways, Max had one of his bigger seizures where his head turns all the way to the left. But his hat didn't turn with his head so now Max's face is smack inside his hat.

I had to laugh and told Max to look forward. To turn his head and look straight ahead.

Well eventually his head turned back to looking straight ahead but this time his hat came with his head so now his hat is totally turned side ways and the ear flap is right in front of Max face.

I was laughing so hard cuz it looked so funny with him just riding back there with his hat on crooked and he can't see anything.

Only GOD knows what was going through Max's mind probably saying "not funny MOM!!!! I'm getting fuzzies in my mouth and eyes"

I tried to fix it again (while driving) but was only making it worse by making it tighter on his head.

Well, we were only a few blocks away from Spot so I told Max to hang on cuz were almost there. Still laughing of course. Sorry but I just couldn't help it.

Ok, so then I get him out of the van and straighten out his hat. The wind was whipping around that day and snow was flying off the roof and such.

I had to go back to the van and get something I had forgotten so I put Max on the sidewalk and he was tilted back some in his chair. I had turned him around so that the windy snow wouldn't hit his face.

But, it was warmer out that day so when I came back from the van, water was dripping right on his face from the roof.

Poor little Maxie just sat there getting that chinese torture (where they drip water on you til you go mad so I've heard) on him for a few seconds which probably felt like forever to him.

I felt like such a terrible mom. I kept apologizing to him. But still laughing.

So, that was quit an adventure for him. I'm sure he wasn't to happy with this trip to the therapist.

But he did really well showing the Speech therapist that he can look at a flash card that she asked him to look at. She held up a card of a cat and one of a red van and she asked Max to look at the red van and sure enough he did.

He did some good looking at some other things I had asked him to look at also.

I was very happy to see him show them that he can do this and that they are encouraged to make some cards of things that Max likes or some choices like laying down or eating something to see if Max will choice one or the other.

The other therapies are going well too and learning some new stretches for him to help that shoulder get loose again.

Yesterday at horse riding Max gave us a real smile just as he was getting down from the horse. Not one of his seizure smiles

One of the side walkers asked Max if he was going to get alot of Christmas gifts for Christmas and sure enough (the side walker asked me if that was a real smile) as I was taking him down from the horse here he was smiling away.

I just held him and looked at him absorbing in his beautiful smile. Then Shari got off the horse and bumped into us cuz I didn't move cuz I was enjoying this moment.

After the smile Max had such a pleasant look on his face as he's had before when we've seen these smiles (which always seems to be while horse riding).

Boy I sure wish we could see these smiles from him more often. Or at least catch one on camera so we could show you and look at it often.

If you could just get into my head you could see it LOL.

So that's my update til after Christmas or New Years. We'll see how busy I get in between the two holidays.

I hope everyone has a Blessed Christmas and enjoy your families get togethers.

Merry Christmas from all of us at the Gosewisch house to yours,

Lisa, Jim, Spencer, Maxwell

Thursday, December 13, 2007 7:55 AM CST

Morning,

Just wanted to update again and try and have a better attitude LOL.

I got this email from a friend saying I was such a downer for Christmas and I was just thinking the same thing later in the day after I had updated.

I also had talked to a couple people and heard of stories that made me realize I should be more grateful that I do have my house and a job and at least 2 vehicles running pretty well for the most part (knock on wood LOL).

And of course that we don't have any major health problems other then a cold here and there.

So, forget my last update from yesterday. I tried to delete but couldn't figure out how to do it and tried but didn't work.

Max has spot today so I'm excited to go but wish we'd had made it last week (snowing so didn't go) cuz I would like to be consistant with going to see some changes.

Max had riding yesterday and he did well for not going in 2 weeks.

I had laid him down on the mat before the other got there, to change his underwear (shall we say) so when Shari came she did some good stretches on him and he was very alert and accepted of these stretches that are different then the others he usually gets.

He made a crabby face for a sec and Shari said she wanted to see a smile and I swear he gave her a smile. A real one that he can make. That pleasant look and half smile he gives.

She also gave him a few bites of food before riding. But he had just eaten so he was to receptive on that but did drink water with gulps and didn't even choke or cough. Very happy to see he did so well drinking like that. He doesn't get liquids by mouth very often that I know of at Sugar Lake.

Riding went well also. They played flash cards and Matched the animal on the card to the animal on the orange cones that were placed in the arena.

Max did some super looking. We just have to get him to stay looking at the correct picture when asking him to look at say the horse when choosing from 2 flash cards. He does the quick look and then turns away LOL.

So that made my day to see him do well. Of course I put alot of pressure on him to make me happy LOL.

I keep telling him "mom needs to have a good day so I'm expecting him to do well with riding, therapy (he'll get that speech again today LOL) so that I can have that good day feeling.

So, I probably shouldn't be updating til after today so I can tell you how he does at therapy but I needed to change this from yesterday.

So sorry about the blah update yesterday and I hope not to many people read it LOL

Lisa

Thursday, December 13, 2007 0:59 AM CST

I have to reupdate tomorrow. Forget my one from yesterday.

Wednesday, December 12, 2007 7:42 AM CST

Morning,

Notice I didn't say "GOOD" Morning. It was kinda hecktic this morning. Are one cat is going nuts cuz it's winter now and he doesn't like to go outside. The other 2 go out just long enough to do their thing and are fine with coming back in and sleeping.

Jim was running late and his car that he bought isn't working well so he takes the Jeep (which is terrible on gas) and I end up driving the van which is what we wanted to not drive so much to keep it going for Max's use when we need it (which the van once again has issues that need work on).

Speaking of Max and getting to his appts with the van. Last week with the snow, I cancelled his therapy appts (Van has bald tires and I'm scared to drive it with Max).

I was going to cancell riding but Shari had called and cancelled cuz the side walker had cancelled.

Max was to see his orthopedics Dr. yesterday but I was having some female issues (terrible pain)that made me cancel Max's appt and made myself one to see if it was more then what I figured it was. Of course it's just me and my age having a harder times.

Christmas is just coming up to fast and we still don't have a tree up (and not much feeling like it now). I did get Spencer some things. Max has very few things for Christmas as of yet.

So I'm just clinching my teeth to get through this month and be done with it. I usually love Chirstmas time but this year not so much and As I've talked to others it seems I'm not the only one that's just not feeling the mood this year.

I do plan on getting Max to riding today. I haven't seen him in over a week now and that doesn't add to my moody life I've been having. LOL.

I'm not a big winter fan anymore I guess.

Spencer had fun with snowboarding though and is going again tomorrow. I'm just praying and keeping my fingers crossed that he does well and stays safe (maybe I shouldn't have said that out loud). He did have a cold but he seems to get over them alot faster then us older folks.

So, sorry to be such a downer this update. Guess maybe I just needed to get it off my chest.

I'll let you know how horse riding goes and we do have an appt Thurs with Spot (therapy) hoping that goes well and that we actually get there with no snow (though they say some is in the forecast in the AM)

Lisa

Sunday, December 2, 2007 10:09 AM CST

Hello everyone,

Just thought I would give a quick update.

Max last week seemed to be doing really well regarding his seizures.

I went out to take him horse riding only to find out that the place was all dark so I guess we weren't to have riding but I didn't get any calls that it was to be canceled and don't remember her saying anything about not riding the week after Thanksgiving.

Oh well, it doesn't matter anyways Max and I listened to Christmas music and it started to snow a little so we had a nice drive.

And Max's seizures were still under controll and had very few of them.

Jim and our neighbor went out to Sugar Lake later that evening to get that big bean bag chair (Max doesn't use it I guess, to hard to get him in and out of it).

Jim and our neighbor both agreed that Max was so alert and looking around. Our neighbor said that when Jim would talk, Max would look around to try and find where Jim was.

And his seizures were few then too.

But then came Friday and our first therapy sessions in St. Cloud.

Max had woke from a nap and started to get upset cuz of his TLSO, and I was getting upset cuz I had gotten lost and forgot to take a right turn. (I gotta remember 2 rights and a left LOL)

Then once we get there Max had seizure after seizure. I was so bummed out. I kept telling the therapist that this isn't the norm for him.

So, hopfully the next time when we go more in the early afternoon he'll be awake before going and stay awake.

It was 9 am last when we went last Friday so it was to early for both of us LOL

Spencer had his orchestra concert last week and 3 of my Aunts came out to watch and both my mother in laws were there too.

It was really nice to have all of them there supporting Spencer.

I do have a pic I'll have to put up later.

We haven't put one Christmas decoration up yet in our house. We usually do it the day after Thanksgiving but Spencer wanted to have friends over last Friday so he did and we were busy the rest of the weekend.

Had a wonderful fun wedding on Saturday. I think it was one of the best weddings I've seen in a long time. Everything at this wedding was put together so well. The bridal party were all soooo beautiful. It was just very, very nice. And a live band which you don't see that anymore.

So, this weekend Jim is working (basketball tourn), Spencer went had a sleep over last night at a friends house.

So, still haven't gotten our tree and now I'm not even in the mood to get one. Would like to just get a table top fake one for this year LOL. I just can't get into the Christmas spirit this year for some reason.

It's just coming up to fast for me.

Well, that's about it this time around. I'll let you know how Max's other appts go with hopes his seizures don't interfer. I did learn alot from the OT therapist re: muscles in his shoulder area.

Stay warm and hope you can enjoy the snow if you like playing in it. Spencer signed up for snowboarding every THurs for the next 6 weeks so I hope he has fun with that.

Lisa

Friday, November 23, 2007 10:58 AM CST

Hello,

Hope everyone had a nice Thankgiving.

Our plans changed from just having Thanksgiving here to going to Laurie's for Thanksgiving.

So, we picked Max up and brought him out there and hung out with Jeremiah, Shawna, Grandma Congo, and Grandpa Ralph came out later.

The night before Max had a cluster of seizures that called for the nurses to give him Diastate (rectal valium) and it knocked him out for the rest of the night.

Guess maybe that was a good thing cuz yesterday Max was wide awake and very alert.

He would look at who every we talking. He would watch the TV (John and Laurie bought a new HD TV. So Max couldn't miss seeing this TV LOL).

Petey (their weiner dog) for some reason was just loving up Max yesterday. We couldn't believe how Petey would just crawl and roll all over Max and lick his face/ears like crazy.

Petey even pulled Max around while Max was in his wheelchair LOL. Petey grabbed Max's pant leg and tugged at it which made Max roll. And then Petey stood on Max's foot pedals making Max roll backwards.

It was one of those things you had to be there to really know what I'm saying but it was bizarr.

Also Gracie, Ezra's little girl, told us she plays with Max. We've always heard of kids having these ...oh how do I say it...sixth sense or ahhh you know what I mean.

Anyways, we were thinking that maybe Max is sending out some new vibes that animals and children are sensing that we aren't.

I have pics from yesterday that I'll put up later. I need to clean out the computer sometime here being that Spencer has been on for a few days and I want to make sure there's no trouble.

Oh I know I had more to say but feeling rushed cuz I have to bring Max TLSO back out to him cuz we forgot it at Laurie's and I have to work (late into the eve). My Jobs are all goofed up being some people took today off and others not so I'm not sure where I'm cleaning for sure LOL.

Ok, Have a good weekend.

Max has scheduled his therapies starting next week so I'll let you know how they go and horse riding starts again next week.

Lisa

Friday, November 16, 2007 9:57 AM CST

Morning,

I seem to always update in the morning. I don't rememeber the last time I said good Afternoon or evening LOL.

Oh gee maybe that's cuz Spencer is on line all the time in the afternoon/eves and I'm at work.

Just a short update.

Max has the ok for all three therapies so I'm looking forward to that and hopefully he'll be awake for the them, especially speech.

Max's has had some riding time and last Wed. he slept through most of it but woke towards the end and of course had many seizures.

Though I think I did see Max try and give us a smile but his lips were fighting it and trying to make him pierce his lips.

I was out to visit Max on Monday and he was sleeping so hard that he actually was snoring.

Shari is going to have some disabled veterans do some therapy riding come Jan. so I told her that I would love to help and be a side walker when she does this.

Well Thanksgiving is coming up fast (and the rush of the holidays to get it all done and bought). We're just going to bring Max home and hang out here like we've done in the past couple years.

We asked our mother in law, Karen, that if she didn't have any plans that she's welcomed here for dinner.

It's getting close to Grandpa Jerry's first anniversary of his passing and you know how those first holidays go when some one you love so much is not here to share these days with.

We certainly know this. Max was still in rehab the first Christmas after his accident though we did bring him home it was very, very hard.

And even the Christmas's after that we're to for quite some time.

But the family together during the holidays sure helps get you through the sadness cuz I'm telling you that the Gosewisch's does not let a minute go by without lots of laughs when we're together.

Oh, I forgot to mention that Spencer got all A's on his report card except for one B in Phys ed.

We're so proud of his grades and that he's doing so well in ALL his classes. I mean usually most kids have trouble in at least one but........

He is interested in some outside activities but it's to late for some and some aren't til high school.

I told him he needs to sign up right away at school start and then can drop them if he doesn't like them.

Well, I should go and make some phone calls. I need to call Spot (Therapy place) and set up appts for Max to start his therapy.

So, here goes our busy weeks with riding, therapy and trying to find time to do Holiday stuff (the shopping I guess I should say).

If I don't update til after next week, I hope every one has a wonderful Thanksgiving.

Lisa,Jim,Spencer,Max

Friday, November 9, 2007 7:59 AM CST

Good Morning,

I'm so glad the weekend is here finally. Been a long week. I do have lots of cleaning jobs this weekend but "oh well", gotta take em' while there available. There could be a time when there's no fill in jobs (when people actually do their job and not call in or not just not show up LOL).

Anyways, I got the ok from Ins. for Max to have some OT and SPEECH Therapy. Just waiting to hear about PT.

But I'm excited to see they ok'd the speech so now we can start to see and work on Max communicating with us.

I appreciated the guestbook entry on the suggestion of photographs (enlarged) for Max to look at and make choices that way.

I'll bring that up to the Speech therapist and also try it myself.

I have to just buckle down and work on what I think he'd be interested in and the choices I think I would want to see if he can make. And then make photo's. My printer isn't good for making photo's (much less do I know how to do it LOL. I've tried and wasted lots of photo paper only to see anyways that my printer doesn't make the best photo's). I seem to be at Walmart enough so I can just use their photo thingies.

I also like the story guestbook entry. Really got me thinking again and surely gives you a different outlook on life and how different we all are and that's ok cuz.

But I guess the struggle with Max that we have is that he wasn't this kind of different before. And it's a big change of different from what he was before. Does that make sense?

I'm not saying we haven't accepted this change but we sure haven't given up either on some gains for him and goals for him.

But I guess that also say's that in the story that down the road things can blossom (happen) for the better.

Yeah the story made me do some thinking last night (far more then what I just wrote :o)

Max had riding last Wednesday and Shari did some flash cards with him asking him to pick one of the cards after she told a small story about each (like a fish and dog)

He actually did well when she then asked to look at a specific card.

We also told Max that when he goes to therapy he needs to show them what he's shown us re: looking at the appropriate card when asked.

Man keep your fingers crossed when that time comes and that he does show them that he understands what they are asking.

As for riding that day, he has lots of seizures for some reason so it wasn't the best ride he's had as in the past.

But I did see some pleasant looks from him so that was worth it.

Well, that's my update for this week. Shari took some pics of Max with her new kitten. She'll print some out for me to show you. I wish you could see how this one interacts with Max. Kinda like Patches did when he was young (and still likes to sit on Max's Lap though he's much bigger)

This kitten is so cute.

Have a good weekend.
And thanks for the guestbook entries. We still love reading them and knowing that Max has a wonderful group of people thinking of him and wishing the best for him.

Lisa

Thursday, November 1, 2007 7:57 AM CDT

Hello,

I know I haven't put new pics up lately and I really don't have any. I need to empty the camera out of old pictures but want to print some out before I do so and just keep forgetting to do that when I go to the store. I know I could make a cd and do it that way but I'm not good at that stuff and it seems to be more of a hassle.

So, I put some old ones up and some winter ones for you to enjoy of what's to come soon LOL.

On the front I have a pic of Max riding but it's from last year.

He has started riding again and I'm soooooo happy. He's back in the saddle and doing well. Seems to remember and is able to get some good arms stretches cuz his mind isn't so on what Shari is doing to his arms (stetching them) so his arms stretch really well.

I had to laugh after I thought about it later that Shari was doing some alphabet flash cards and asked Max to look at the letter B and the letter C and then to look at the letter B and to keep looking at it and then we'd go find it on a pole in the arena (while riding the horse).

So she gave Max a hint that the letter B has blocks on the flash card.

Max looked at both of them and then looked at the letter C. BUT, he kept looking at that card. Just like he was told to do but not the right one.

I thought to myself later that day that that is soooo typical Max to do the opposite of what we ask him to do LOL.

If Max didn't want to do something we asked him to do he wouldn't. Of course not always that way but I remember some of his attitude days he had.

He did well with some head control also yesterday so that was good to see cuz he really needs to work on that and I told him that was his homework for the day to work on that. And I gave him an "A" for the day like his brother is getting in school.

Last Saturday we brought Max home to visit with my Aunts who came out with lunch for us.

We had a nice visit and Max did his talking and stayed awake the whole time which was nice OH wait, he did take a little snooze til dad tickled him and he woke up right away and showed my Aunts how many seizures he can have after a nap. I really hate those seizures and they get in his way of his learning I'm so sure of it.

We also had Max's evaluation for PT and Speech at SPOT in hopes that we can get an ok from insurance that he can go and we can learn some new ways of helping Max stretch out and also help with his swallowing, head control, and the best of best in hopes of seeing if we can communicate with Max with his eyes'

It's going to take awhile to get to this point cuz we have to go through all the red tape and work through flash cards first and do the cheapest way to see if Max understands what we ask before trying some kinds of computer eye communicater or whatever it is that I keep hearing about that will let us communicate with Max through his eyes and a computer board.

I also hope that Max is awake during this time. Guess we'll have to start with some physical stretches first to wake him if he is asleep cuz he was sleeping during the eval with speech and the PT eval he woke up.

So, that's where we are at right now with that. Just a matter of waiting to see if Insurance oks all this.

Keep your fingers crossed for us and then we can start our busy weeks ahead going back and forth and plus horse riding.
And see if we can get Max to progress in area's that I know he can, we just need some help from others and some of the tech stuff they have out there that's not available to me.

Lisa

Tuesday, October 30, 2007 9:18 AM CDT

Sorry I haven't updated in awhile. I thought being it's already been this long that I'd wait til after his PT and Speech evaluation that he has today at Spot. And after his horse riding on Wednesday.

Max didn't have horse riding last week cuz one of the side walkers couldn't make it and we like to have a side walker on each side of the horse.

Ok, so I'll update on Thursday after we do these things so I can add to the update.

Lisa

Thursday, October 18, 2007 10:02 AM CDT

Morning,

Well it's fall break for Spencer and Jim has a couple days of vacation today and tomorrow. But the rain just doesn't quit to get anything done outside for winter. Hopefully we'll still get some nice sunny days before the snow flies and things can dry up some.

Max had his appt with Spot a couple days ago and now we are waiting to hear if Dr. Nelson will give the ok for Max to also get PT and Speech theapy while his getting his OR therapy.

Speech will be great cuz they do have a communication board that works for eye's. Would like to see if Max can communicate with us this way. Hopefully it's not through blinking cuz he doesn't blink on command when asked. He's more of looking here and there. I think that's what she said this board can do.

Alos some PT for his legs would be nice cuz he is a little tight in some area's there too.

We went horse riding yesterday and Max cringed alittle once on the horse (stetching his legs in that way he's not used to). But once we got riding he loosened up and relaxed.

He sure looked around alot and talked his talk alot.

The bright lights in the arnea seem to catch his attention and make it hard for him to concentrate on what we are doing.

But he did play beach ball a couple times and was very attentive (with his eye's) while doing that.

We got a couple pleasant looks from him too.

He was wide awake and showed now tiredness. I told therapy that when we do come it needs to be early morning or later in the afternoon when Max seems to be awake. Around 10-11 he's always napping.

So now we just wait for the referrals and make the appts.

I've been talking to Max telling him that these appts are the very important ones where he needs to shine and show them what he can do and how he does know what we are talking about when we tell him to do things.

I guess I'll update you on all this the next time. They want to see Max 2x a week and I guess we have the ok to ride again next week.

Lisa

Saturday, October 13, 2007 9:30 AM CDT

Morning,

We had a good day on Thursday. Max did well with his stretches on Thursday with me. I even got him on his tummy with a pillow under his chest area with his arms over the pillow and having him put weight on his elbows.

He tolerated it well.

He didn't talk that much that day though even though I tried to get him to talk to me. But he seemed pleasantly happy.

I also got the ok to have him go to therapy at this place called Spot in St. Cloud that I've heard so much about.

I looked it up on the internet and they have a pool there and stuff. Maybe I can get them to ok some swimming time with Max and extra stuff more then just working with his shoulders.

I need to get them to see Max as I see him for what he can do and not for what he can't.

I also sent Shari (Max's horse riding therapist) a website I thought might interest her or others that ride and explained my life being back to the norm as far as working eves again.

Said I would like to see Max ride again and I'm checking out grants that would help for money (which is what that one site offered).

She sent me back an email and was excited to hear from me and was very happy to have Max come back to ride and offered this Wed. to ride and starting up again in Nov.

So, I'm very excited and would love to see Max's reaction to riding again. I really think it helped in his legs and arms cuz Shari would stretch his arms up on the horse and Max did well cuz I guess it's more interesting to do these things on a horse then laying on a table LOL.

Well, I have to go to work. Just thought I would update quickly.

Have a good weekend.
Lisa

Monday, October 8, 2007 8:32 AM CDT

Hello,

Thought I'd give a quick update after Max's appt with his pump Dr.

We decided to leave his pump at the dose it's at cuz I did some ROM (Range of motion) on Max and did notice he was tight in some areas.

So I decided to go out to Sugar Lake everyday for a while and do ROM on him to help give him an extra hour of stretching to see if that helps.

The problem was that he gets 350cc of water at 11 am so it was always so hard to find the time to go out and do things with him when his tummy isn't full of something.

So the nurses said they'd push his water and meal times back an hour so I could do this for him.

Then I was reading emails from the PONDS group I belong to and one of the parents mentioned that their son gets water every hour.

It dawned on me, why not give Max like 80cc's of water every hour instead of giving him 350 at 11 and 3 during the day.

Maybe this would help with his going pee on a more regular basis's and then I also just thought that this may help with his reflux so it's not so bad.

I don't know why this didn't come to mind a long time ago. I mean we all drink throughout the day not 350 cc's 2x a day. It's not that this much was just given to Max it was given over an hours time. But even so, that took an hour of his time in the day.

Also the Dr. suggested trying this strap or tape (sounds mean) but Max's shoulder hunch forward, due to lack of tone and he stretches alot bringing them forward, but this strap/or tape will help hold his shoulders back.

We thought we could try it. Don't know what the outcome would be but worth a try even it it does help with stretching this area.

With all of Max's seizures and his stretches he does it's really hard to keep his muscles stretched out so he doesn't get tight.

Max also had a small bought of the flu we think. He was sick for just one night last week. But was fine the next day.

Thinking I need to get the kids their flu shots this year. I didn't last year and felt guilty but was lucky they didn't get sick at all with the flu.

I was going to put different pics up but can't find any I like or real recent and the computer is running slow after a weekend of Spencer playing on it so I have to clean it out so it runs better. LOL

Speaking of Spencer, he had conferences last week and he's getting all A's except a B in Math.

He went to Buffalo's homecoming football game on Friday and met up with some friends there.

So, we're very proud of his grades and excited that he's showing interest in getting out and trying some of the school's activities.

He said he had fun at the game and we won against Rogers.

Well, I should get going. Have to be out at Max's around 11am. I need to stretch him and then try some other positions with him that will put some weight bearing on his shoulders and things like that that I have in mind.

Kinda scary cuz I haven't done this in awhile and I guess I gave him some bruises last week on his one wrist from stetching it so much. Oppps.

Lisa

Monday, October 1, 2007 8:25 AM CDT

Morning,

Well we made it through another anniversary day with Max without any tears but talked about it some at 3:20 when 911 was called. I just happened to look up at the clock at that time.

Max took only one little cat nap while at Grandma and Grandpa's.

Otherwise he was awake and doing some chatting and looking around.

He did have some ice cream cake but it was hard for him to eat cuz he didn't have his TLSO on so it was hard for him with his head postion not quit right for swallowing.

He has a pump refill on Thurs so I have to run out there this week before that to check his tone out to decide if I should have his dose lowered or not. And if I do want it lowered I guess then it would be up to the Dr. if she agrees.

Thanks for the guestbook entries offering your thoughts and prayers.

We still, after 7 years, very much enjoy reading and hearing from you.

Have a good week. It's suppose to be nice here and I hope it stays nice for a long time to make winter shorter :o)

Lisa

Friday, September 28, 2007 8:38 AM CDT

Good Morning,

Quick update. Not a whole lot to say. My brain has been going back 7 years ago every now and then this last week and then I have to make myself think of something else.

Tomorrow we are going out to Grandma Congo's and Grandpa Ralph house to do some fall cleaning for them in their house and bring out our cat condo that our dang cats won't even touch. Their cats are indoor cats and love to hang out on those condo's.

So I told Max that, that's what we are going to be doing on Saturday (for his day). Clean Grandma and Grandpa's house.

Boy he sure looked excited when I told him this (not). I think he even yawned at me LOL.

Max was alert yesterday when I saw him but was getting his water so I couldn't move him around much. When I do somethings with him during water time he sucks in air and gets those terrible hic ups.

I told him I'll roll him around on the floor at Grandma's. He has a refill on his pump next week and I would like to see how loose he is to see if we can go down some on his dose.

Max was under his fish net thing yesterday (it one of those nets that hang over kids beds and they have different kinds so we got the sea one) and one of his hanging fish matched his shirt perfect. So I showed him and he looked right at the seahorse and then at his shirt.

He looked at a couple other things I showed him and I would put them in his hand and hold it up and he'd look at it.

So, I'll have more to say after Sat. When we have a day to spend with Max. I told him he better sleep well on Fri. night and can only sleep in the morning and be awake in the afternoon. I think he'll be awake when at Grandma's, he hasn't been in there in such along time.

Oh, Spencer is doing awesome in school. He got asked to take the ACT and/or the SAT test.

It's voluntary and it's called the MATS (the midwest academic talent search). Saying its for kids that who score at or above the 95% on one of the score categories on a nationally normed, standardized acheievement, aptitued or abilities test or students who have been identified for a school's gifted education program.

Spencer did really well in reading. So he wants to try and take the SAT test. It should be interesting to see how he does. They don't take it till Feb. I think it said.

He's doing well in Math with a B+ so far.

We couldn't be any prouder of him (ok, he didn't get his reading and writting from his mom LOL)

I can remember him struggleing so in elementary school (in a few subjects) for awhile there and it seems his brain just click all of a sudden in all subjects.

So on Saturday we have (I guess you could say) a new Thanksgiving day. We are so thankful that we still have Max with us to hold and love. And though he's not doing the things that we so wanted him to do, he's doing way better then what we thought would be after being told what his outcome would be. And I think he still has room to improve in some ways in his own time and with the help of prayers that, of course, we still ask for and Thank the Lord for Max staying so healthy.

And for Spencer doing so well after seeing and having to go through such a hard time that kids shouldn't have to even think about at such young ages.

Well, I should go. Have a beautiful day. They say it going to be one beautiful day.

Lisa

Tuesday, September 18, 2007 8:40 AM CDT

Good Morning,

Well your prayers for Max worked wonderfully and I've thanked the Lord over and over again for Max to get over this cold or whatever it was so quickly and for it not turning into something worse.

He was fine come the following Monday and Tuesday (was even a better day for him).

I (we)also am so very grateful for the Sugar Lake nurses who cared for him so well.

They wanted (and did) try to call Max's peds Dr. and I was ok with that but also said that I don't want his Dr. to jump to any conclusion that he needs to go into the hosp for a day or so when Sugar Lake can (as we've seen in past) do exactly what they've done for Max in the hosp.

I mean if his ped's Dr. thought he needed to be in the hosp. I would prefer he go to Gillette if it's that bad but to just send him to Buffalo, who aren't used to caring for kids such as Max, it's not worth it.

We told the nurses at Sugar Lake that they do a great job in caring for Max when he's sick and can keep up better with his needs (being there's only the 4 kids verses a hosp where the nurses are caring for many) and can do more for him when needed being they are right there to see his needs pretty much instantly.

Also, Max is more comfortable with being there then the hosp and being around familiar surroundings and being with HIS nurses who he knows love him very much and will do the best for him.

So the healing will be more quicker.

And so it was.

Like I said don't get me wrong, we're all for him going to the hosp if needed but it was to soon to tell and I would have taken him to see his Peds Dr. if she wanted to see him (she never returned their call and if she did he was better by then (guess I never asked if she did call back or not).

I know he was having a hard time breathing there off and on for awhile but the girls did very well with giving him O2 when needed. And if he was in alot of distress, 911 always can be called.

I also know it's hard for the nurses there to watch and see Max sick, especially when he's done so well with not getting sick to often.

I'm sure it scares them (like he's their child) cuz they've gotten so attatched to him (all the kids) and just want to make sure he's getting the treatment that he needs that they may not beable to.

We have tons of confidence and faith in them though to do what's right for Max and feel they have done so.

I'm actually jealous that Max gets over these episodes so easily. Gosh when I get a cold or what ever, it sticks with me for months LOL.

I saw him yesterday and of course he was sleeping but did give me a few "uh uh's". I just talked with him anyways and gave him hugs and kisses.

I was also thinking this past weekend that I've been so concentrated on prayers for Max (these last 7 years) that I really and also need to pray for Spencer. Not that I haven't totally not thought or prayed for him but Spencer is hitting that 13 teenage years when I think he's going to need more parental guidance that seemed to just hit me this last weekend.

I tried to explain what I mean but I guess I don't really have to if those of you have teenagers or went through the teen years with your kids. I'm sure you know what I mean.

Well, laundry is calling me so I should get my stuff done around here while it's still reasonable early and I won't feel like it later.

Thanks again for your thoughts and prayers for our family, I should thank you more often for hanging with for all these years. GOSH, just dawned on my that the anniversary date is coming up for Max. I better plan what to do with him for that day.

Lisa

Monday, September 10, 2007 8:50 AM CDT

Morning,

Thought I'd give a quick update on Max.

We never did take him out this last weekend cuz his nurse called Saturday morning to say that he appears to have a sinus infection of some sort.

So I went out there with some Benedryl to help loosen it up.

He was on 02 for awhile off and on and they give him his nebs which seems to help.

Boy little guy has to have his head tilted back so that his tongue gets out of the way to breath out of his mouth.

He was alert though when I talked with him Saturday. I was on his right side and he was laying on his left and when I asked him to look over at mom, he turned his head a little and looked right at me.

Yesterday they said he had it kinda rough in the morning and really afternoon and then later afternoon and evening he seemed much better.

So, if you can just take a few minutes to say a little prayer for him to get over this in a hurry, we'd appreciate that. He's done so well in the cold and flu area's that it's hard to seem him go through it when he does get sick.

But he's doing really well and not getting upset with it by getting stiff and getting upset in anyway.

I noticed that a friend of mine from the PONDS (parents of near drowns) wrote in Max's guestbook Re: his seizures.

I just thought I'd answer her ? here so that if anyone was wondering what I would say to her (I yet to write her re: it).

I don't know if you remember that we did try and lower some of Max meds to take him off one or two and the ones that we did try (it was awhile ago) did make a difference in his seizures (he had them worse).

And his seizures seem to sure change from one kind to another which is so hard to control with meds cuz certain ones take care of one type and another takes care of a different kind of seizure, so if they keep changing how the heck can you keep switching drugs and they don't always work much less Max suffers so with the side effect if he gets them.

And speaking of side effects, some only last awhile such as sleepiness and Max has been on these for so long that sleepiness shouldn't play a factor into why he's been sleeping so much lately.

As far as seeing another neuro, we went down to the Mayo awhile back and you can't get any better then the Mayo Dr.s and they said they would have done the same as Dr.Wical (Max's Dr he has) and that they feel Dr. Wical is one of the best Neuro's Childrens has.

I know that Dr. Wical also keeps up with the newer drugs that come out and of course is very knowledgable if they would help Max out or not. So, whether to try or not waste our time with them. And they don't seem to come out with new ones that often much less kid friendly.

It's hard to control his seizures being he's has the global brain injury and so many different types of seizures. There isn't one med that can fix all of them.

Well it's Monday and hard to get my rear in gear but I better try.

I'll update you on Max and his cold.

Thanks for taking the time to keep him in your thoughts and prayers

Lisa, Jim, Spencer, Max

Thursday, September 6, 2007 9:13 AM CDT

Morning,

My computer is running super slow for some reason. So, I thought I better do before something goes really wrong with it.

I can't believe school has started. The summer (once again) went by way to fast.

We're hoping this weekend we can get Max out to a park. Spencer wants to ride his bike on some trail so I'm thinking of taking him to Baker's park and then I thought maybe we can make a day of it at Baker's park and take Max for a stroll out there cuz we didn't get a new stroller for him so his wheelchair would would well out there being it's a tarred trail.

Guess we'll see what the weather is like before saying anything to Max.

I had a busy week last week getting Spencer ready for school and extra cleaning jobs so, I didn't get out to see Max but did see him yesterday.

He just got out of the stander and we talked for awhile and then Max kept talking right up til he fell asleep. He was like trying to get all his talking in before falling asleep. LOL

You could see his eye's just wouldn't stay open for him he was soooo tired.

I told him it was ok to fall asleep if he needed to. And then he was out like a light.

I moved him to his bed and he started to do his talk again. Maybe he was saying just let me sleep, just let me sleep LOL

So not a whole lot to say about what's new with him.

I'll update next week if we get him out and about. If the weather is bad maybe we'll take him to a movie if I can find one appropreate for his age.

Lisa

Tuesday, August 28, 2007 9:46 AM CDT

I don't think my update got updated so I'll try again.

I can't remember all I wrote so I'll have to try and remember.

I have a busy week this week with only one week left before school starts and I have extra cleaning jobs all week and on the weekend plus the plans we have for the weekend.

To much in to short of time.

We had open house last night and one of Spencers teachers is the football coach and the first question he asked Spencer was if he played football.

So, Spencer is thinking about it and we tossed a football around the yard when we got home and he did well.

But he has to let me know like (yesterday) if he wants to play cuz he'd have to get a physical before he can play and there's only this week left to do it.

Would be cool if he did and liked it. Cuz Max was to be our sporty boy and I sure do miss have a boy in sports (not that I'm not proud of Spencer, I am) but the teacher told Spencer he should get into some kind of sport cuz it makes school fun(ner) and this teacher is the track coach and Spencer said he's interested in track and he was excited to hear that.

We brought Max home on Sunday for my birthday (that was Friday) and he slept the whole time here. We tried to wake him but he'd just mumble at us and pierce his lips (one of the pics I put up shows that.)

I wanted to take him to our neighbors and play fetch with their German Shepard dog that loves and can play fetch all day long.

But that didn't happen cuz of sleepy head.

SO we ended up just looking at him all day, admiring how cute he is.

I don't have much to update being so, so I guess you'll just have to look at his pics and admire how cute he is also like we did.

OH, but I didn't get some different "uh uh's" from him the other day when I went out to visit him. I told him to say a different kind of "uh uh's" and he mimicked me pretty good. Copying my "uh uh's" I found that to be interested and wanted to try that more when at home here but like I said he just didn't want to wake up.

Have a good week and a wonderful/safe holiday weekend.

Lisa

Sunday, August 19, 2007 12:04 AM CDT

Hello,

We just got back from camping (all week) yesterday afternoon (I didn't mention us going last update just cuz our house would have been empty and I never know who reads my updates and knows where we live).

We went with Laurie, John, Gracie, Jeremiah and his girlfriend, Shanna

We had a good time and the weather was pretty good for the most part (heard it was miserable here so I guess I shouldn't of complained up there LOL). Rained only one day but was kinda cloudy a few other days and Friday was the best with all sun and no wind so we were able to go out in Laurie's boat with out being bounced around like ping pong balls.

The nights were cooler so the campfires felt good

Gracie was with (Ezra's little girl) She was fun to have around and brought back many memories of when our boys were small and went camping.

We tried to catch the metor showers on Monday night and saw a quite a few but not as many as they said there'd be. But we did make our own constillation (sp?) in the stars. I'd explain more but it's one of those things you had to be there but it was lots of laughing at what things we made up in the stars.

Then on Tuesday night when they were to be the best it was cloudy out so never got a chance to try and see them.

I don't know if Jim is going out to see Max today for sure or not but I'm going tomorrow. I have to replenish the house with food and put some more things away and stuff like that today.

We sure do miss him when we go camping and we really don't go that often anymore I think just cuz it's just not the same. But I bring pictures of him and one of his blankets to sleep with.

Spencer had a good time and didn't even play on his DS game once during the week. Did alot of biking riding and found some neat trails with hills and jumps to ride on.

I put some pics up on the site of the trip and have more to show when I change them.

Lisa

Thursday, August 9, 2007 9:53 AM CDT

Good Morning,

Thought I'd update quickly again while I have the chance to before Spencer gets up LOL.

We had Maxwell home last Sunday for a visit with the Grandma's and Grandpa's. My mother and her husband,Jim, are up from Texas for a few weeks and Grandma Congo and Grandpa Ralph came also to visit.

Max actually was awake the whole time listening to the familiar and also the nonfamiliar voices (he only see's my mom once a year).

Max didn't do any talking though til my mom left. I don't think he could get a "uh uh" in if he wanted to. My mom had a lot to talk about LOL.

He didn't eat his lunch very well for me that day. He's so cute when I would ask him to look at the spoon and see his food and to open his mouth, he did a few times but then he did the looking down to the right and totally ignored me.

I would ask him to look at me and he would for like a split second and then look down to the right again.

So I ended up giving him a tube feeding.

Though he did like his strawberry malt I made him with fresh strawberry's. He likes his sweets thats for sure.

On Tuesday he got his botox injections for his wrist's and fingers. Mostly on the right arm.

We were talking about his posturing. I get alittle fustrated with the staff at Sugar Lake cuz I try to explain what posturing is and tone. To me two different things.

Some think that when he postures he's stiff when doing range of motion or bathing him.

He gets stiff at times when you are doing things with him cuz he doesn't want those things to be done at that time.

Posturing is when he's just laying there and goes into this arching, sweating, blotching skin, snorting on his own cuz something is bothering him.

Some haven't seen this and Some have like his home nurse that's works there. She knows cuz she's seen it many times in the beginning after his accident.

Jim and I played with Max on Sunday and bent him all around and stuff and he didn't get stiff at all.

We really think he can make his own choice, such as his quiting eating and ignoring me which I've seen before when Shari at horse riding after feeding him for awhile he just didn't want anymore.

And when seeing, hearing about his stiffness. There are times he's fine and others he goes stiff.

This is how he's communicating with us to leave him alone for now LOL.

I think we should try the, I'll be back in 5 mins to finish our activities (what ever it may be) and maybe set a timer and when he hear's it ding we'll be back to finish.

Wonder if that would work and he'd remember and then see what happens.

I really think you have to also keep explaining to Max what you are doing and why.

The PCA that was with on Tues. was showing us something on Max and she just grabbed his leg and bent it pretty aggressivly and I was alittle shocked and said so.

I think I may need to talk with Jodi re: reviewing some things with Max again to the staff.

I'm feeling alittle out of touch with his cares and what he's doing and how he's doing.

The one thing I don't like is people get so defensive when I tell them what to do and get the "I'm not there and I don't do it all the time so what do I know".

That's happened in the past so I'm just reflexing from that.

Anyways that's my Maxwell update for now. Thanks for visiting his site.

Take care,
Lisa

Thursday, August 2, 2007 7:32 AM CDT

Good Morning,

I couldn't sleep in this morning. Don't know why. I got up to get some things out of my jeep cuz Jim took the jeep to work and I went back to bed and just never fell back to sleep. Dang, I hate when that happens. Looks like a nap is inevitable.

ANYWAYS, You'll notice I finally got some new pictures up. There of when we took Max out to Grandma and Grandpa's camper in Howard Lake.

Notice the crabby look on Max's face on the front page. I had told you he slept the whole time out there and that was the look he'd give us when we tried to wake him up LOL.

The other pics are us out there hanging out.

Saw Max a couple times this week. The one day he was awake and chatting with me, yesterday he was sleeping and groaning to me to leave him alone.

We are bring him home on Sunday to visit. Grandma and Grandpa are coming out to see him and my mother is back from Texas with her husband, Jim and they are planning to come out and visit with him also.

Hopefully it'll be somewhat nice and not so humid so we can hang outside.

So other then that, I'll update after Sunday when we actually spend some quality time with Max and I should have something to write about.

I just wanted to get some new pictures up.

My thoughts and prayers are with those (and their families) that were on the bridge yesterday that collapsed.

Lisa

Tuesday, July 24, 2007 8:36 AM CDT

Hello,

I don't have a whole lot to update on today. I have to admitt that I didn't even see Max last week. I had quite a few extra cleaning jobs and was so tired.

Now it's super humid and I hate to bring him home cuz we don't have air in our house and it's like a sweat box and Max doesn't do well in such humid weather.

I felt so guilty not seeing him last week that I don't think I'll let a week go by again. I was telling Jim and Joanne that, even though this isn't a good excuse, that I get depressed at times when I go out there and see him. Like I said before, there never seems to be a good time to see him during the morning/day hours cuz he's getting fed or his water and that makes it hard for me to do things with him cuz his tummy is full. He seems to say so too with his moans and groans.

He's also getting so big (long) that it's hard to hold him now and have him sit up on my lap to practice his head control. And I really miss holding him. I still think of him as that little 3 year old boy.

So, I just hang over him and give him kisses and hugs and hold his hand.

Yesterday he actually woke up for me when I got there and stayed awake to visit with me. That made me feel good and he did his talking to me.

Told him it was super hot out so that we'd wait til it cooled down some before bring him home (we have to get the van today hoping it's fixed of leaks now).

Also thought maybe we could take him to a movie if there's one that we can find that we think he'd like. And not Harry Potter. I hate watching movies that I haven't watched from the first one and followed it through. LOL

We do have a wedding this weekend to go to.

Spencer was invited to the wright county fair with a friend some time this weekend.

Oh and we sold our boat this last weekend. I can tell you it was sad for me to see it go (even thought it didn't even start and was giving Jim so much trouble the last few summers).

The thoughts of all the good times and places we took the boat. Even after Max's accident, we took him out in the boat a number of times. More times then I realized when I started to think about it.

Makes me wish I could go back to those days when the kids were small (though at the time I know there were days when they drove me nuts) but guess you don't realize til they're grown up just how much you worried less about them and they enjoyed hanging with you and you were like the greatest thing and came up with cool things to do. Stuff like that.

I seem to worry about Spencer more these days, even though he doesn't do anything but sit on the computer. But that's just my worry. And he doesn't care to hang with us LOL. At that age I guess.

We do have some vacation planned to camp and Valley fair. But I'm thinking we need to have a friend of Spencer's come with, even if we go camping cuz he gets so bored.

WEll, I think I've vented enough on what's on my mind which I didn't plan on. LOL I guess it was the conversation that me and my boss had yesterday when going to a cleaning job.

I can work on those new pics tomorrow when we get our van back. Camera is still in the van, probably melted down to a plastic hunk of nothing. LOL

Stay cool and thanks for letting me vent. Haven't done so in awhile I guess.

Lisa

Monday, July 16, 2007 8:44 AM CDT

Good Morning,

Well we finally got Max out and about on Saturday.

We went out to Grandma Joanne and Grandpa Ralphs camper out in Howard Lake. Aunt Laurie and Uncle John came out to visit also.

But the little pooper slept the whole time we were out there. He did try and wake up some and when he did it was a very short time.

Joanne and I even think we saw a real smile on Max's face. We didn't see any type of seizure before or after this smile so we think it was a real smile from him.

Of course on the way back to Sugar Lake, Max woke up and was bright eyed and chatty.

I told Max about his day that he missed and that we did take pictures to show him that we did take him out to play.

I would put the pictures up but I just realized the camera is in my van and Jim took the van to work so I'll have to do that later.

So, other then that I don't have much more to say. When Max sleeps, there's nothing to write about LOL.

Have a good week
Lisa

Tuesday, July 10, 2007 9:22 AM CDT

Good Morning,

Thought I would give a short update on Max.

He's been doing really well after surgery and appears to be still pretty loose.

I noticed yesterday some tigherness (is that a word ? LOL) in his left elbow.

The nurses have noticed that Max seems to be making his own decision when it comes to one of his therapies he's suppose to do.

It's the side sitting and indian sitting (or whatever you call it) that Max just doesn't seem to want to do.

They said he just gets stiff on them when they try and even after talking with him and explaining what they want him to do.

I had to laugh in a way cuz they said he's fine with his other ROM and therapies but these he just won't bend for them.

So in my opinion Max is making a choice and showing us that he will do what he wants when he wants. Oh, I should tell them to maybe try at a different time. Maybe they have but it seems to be both shifts that he refuses to do this.

I'm also assuming it's not cuz he's in pain when doing so cuz they can bend him in other ways without him fighting it.

I saw Max yesterday in the eve trying to catch him more awake then when I go in the mornings.

He was awake and looking around. He didn't talk much to me other then when I would pinch his cheeks, then he'd talk. I suppose telling me to quit squeezing his cheeks LOL.

But he sure did pay attention to me when I was telling him about our neighbors dog playing soccer with me the other day.

Max really looked at me and kept his concentration on me when I was explaining how the dog would block my kicks with the ball.

He see's his pump Dr. this Thursday so we'll see what she thinks of Max's tone after his pump was turned down so much lower then usual.

I'll let you know how it goes.

Lisa

Friday, June 29, 2007 9:47 AM CDT

Morning,

Thanks for your thoughts and prayers for Max for his surgery.

Everything went very, very well.

He did have a little trouble with the antibiotic they give first. He got the red mans syndrome I think is what they call it.

He got all red and blotchy and was kicking around and stiff. They say it can in most kids cause this itchy feeling cuz it's such a strong antibiotic. But they gave him 2 doses of benadryl and then he started to fall asleep and feel better.

We had a surprise and So did the Dr.(surgeon) when we talked with him re: the placement of the cathater in Max's spine.

We wanted to have it lowered cuz Max's other Dr. that watches over his pump, thought it was placed to high in his neck (at T1) so we asked the surgeon to lower it and he didn't feel real comfortable doing so.

But he said he'd talked with Max's other Dr. and take an xray to see how it looks and lower it to like T3.

He said if he does we may see Max get stiff and his autonomic function go out of whack again (his temp, heart rate, sweating, stuff like that).

Well when Max went into surgery and the Dr. took an xray he found out that when Max grew taller the cath went lower and is now at T5 (in his spine).

So, Max has shown us in this way that the cath didn't need to be so high up cuz he didn't get any of the signs the DR. thought he'd get if he lowered it himself.

Also when they started Max's pump up and put baclofen in they changed the dose at 75 micrograms a day continuous and when he went in it was set at 90 micrograms a day and in a 3 step level for different dose given throughout the day.

They say you'd see a change within 24 hours and he was in the hosp beyond 24 hours and showed no signs of stiffness at this level.

We were nervous that he'd get all wigged out at this dose but again Max surprised us and has stayed loose at this dose.

So, we're thinking maybe, just maybe Max doesn't need baclofen anymore and I'll keep lowering his dose when we go in to refill it to see just how he does.

When Max came back to his room after recovery he was wide awake and looking around and doing his talk.

He would look at the nurses as they talked with him and a few of the nurses that took care of him way back 7 years ago were there and were just amazed at how tall he had gotten.

They complimented on how beautiful he is and his gorgeous red hair.

So he's back at Sugar Lake and the nurses there missed him tons.

So we are very excited about all this and we are hoping that with the new lower dose that Max may be able to show more signs of movement on his own, especially in his neck and head control.

Thanks again for all your prayers as you can see they do really, really help Max. We are so blessed to have Max doing so well compared to what we thought would be 7 years ago.

And how gratful we are to have such a wonderful hospital as Gillette with wonderful, caring Dr.'s and nurses.

Have a great weekend,
Lisa, Jim, Spencer, Maxwell

Tuesday, June 26, 2007 9:25 AM CDT

Good morning,

Just thought I would quickly update and ask that you keep Max in your prayers tomorrow morning.

He's getting his new baclofen pump put in at 9 am. He's had the first one now for almost 7 years and it's time to replace it.

We aren't to worried about it but we do always get nervous when Max has to be put under in a deep sleep when he has his surgeries.

He'll stay at Gillette childrens for one night as far as we know.

I'm going to run out there today and see him.

Thanks for your thoughts and prayers for him tomorrow.

They've always helped in the past so I know they'll get him through this also with no problems.

Lisa, Jim, Spencer, Maxwell

Saturday, June 16, 2007 7:35 AM CDT

Good Morning,

Just thought I would run a quick update by.

Not much to say cuz it's been so hot out that we haven't taken Max outside. Yesterday was so bad I even felt nauseous.

So Max and I had our little chat about what we've been doing.

I told him in a couple weeks he'll be getting a new Baclofen pump.

I told him I was glad that his back had gotten better but cuz he had lost weight they tried to fix his TLSO to fit better and now it makes red marks on him that don't go away in the 20 mins time they say it should.

So we'll have that fixed when he gets his new pump cuz I'm sure they'll have to adjust it for that too cuz this pump shouldn't stick out so far as the old one.

I told Max that Spencer had to go to the Dr. for allergies that were really bad for him this year. Max hasn't had them this year like in the past. But then we didn't have much spring and didn't get him outside much cuz it seemed to jump right into hot weather.

I forgot to tell you guys about Spencers last day of school. I was visiting Max and don't get signal with my cell out there and I saw that Spencer had called me so I called him and he told me he wiped out on his bike.

To make a long story short, his bike switched gears and he lost his footing and did a face plant on the side walk and broke one of his front teeth off and got a lip sore.

We spent 2 hours at the dentist and then had to go to the oral surgeon on Friday to see if he fractured his face.

Good news is that he had no fractures and the Dr. there said he was lucky cuz he's seen 3 other kids that had nasty face fractures.

He got his report card for the last time this year and did very well again with mostly A's.

Hope next year his grades are as good and he likes school.

Well, have a nice weekend. We have a grad party to go to today and Spencer is going to the carnival with a friend this afternoon for awhile first.

Lisa

Wednesday, June 13, 2007 11:07 AM CDT

Good Morning,

Well we sure went from winter to summer it seems. It's been so hot latly.

I was going to take Max for a stroll the other day but he just ate and was alittle upset and so I didn't want to wheel him down the dirt road and get him even more mad and uncomfortable. It was super hot too and not much shade going down the road.

He saw his ortho Dr yesterday. Jim went with him to this appt cuz I had to work (which didn't go well. I'll explain that later).

The good news is, is that Max's spine (the curve) has gotten better at the top. Thinking cuz he's been wearing his TLSO more now.

But cuz he lost some weight his TLSO isn't fitting well and is somewhat loose. So they had to pad that up temporarily til he gains his weight back to where it was.

But Jim said it was a long day cuz they were there from 1:30 and Max didn't back to Sugar Lake til 6:30. Boy little guy. It's hard to give him any kind of formula or water at these appts cuz he's up and down so much with trying on his TLSO and that. His reflux gets the best of him then.

I was going to take some newer pics of Max but the camera is on video and I can't get it off for some reason. So, I'll have to show that to Jim so he can do it if he even remembers LOL

I've also decided to not continue working at the dialysis for a number of reasons. The biggest one is, is that I don't seem to get out to see Max like I thought I would. After working 13 hours in a day, I don't feel up to driving out there.

I don't like working 13 hour days or even 12 on the other days. It's to hard on my 45 year old body. Lots of standing and my legs (knees especially) get sore.

There's alot of other reason's also and I think that the Dialysis assistant wasn't really in the plan in the long run after talking to the Clinical manager nurse. She didn't even bring that up til way later in our conversation and even then it sounded to unforsure if it was to be or not. Plus less pay if I was to just do that only.

It's a depressing job too watching these people older, younger going through this 3 hours 3 days aweek treatments.

Yesterday on older man's access stopped working after a couple needle sticks (I didn't work on him) and I again forgot to close this saline lines and gave this older lady 200cc's of saline by accident and her blood started running back up into the bag which grossed me out (not to get graphic on you guys but that really upset me to see that).

So I'm back cleaning and my boss gave me some good deals along with it. And it feels good to be more physical at my job then just standing.

So now I can also go see Max more and during the day and get him out and about (well try, still have no van yet) but will figure something out but at least I can see him and be home with Spencer during the summer days and try and get him off the computer LOL

Speaking of which I should go wake him up. It's getting late and then he stays up to late at night.

Sorry to vent more about me but I was very happy to hear that Max's back got better. Maybe his arm will move better now also with his curve not so big right by his shoulder blade.

Have a good week,
Lisa

Saturday, June 2, 2007 10:24 AM CDT

Morning,

Forgot to update when I got home from Max's appts.

All went pretty well.

We saw his neuro first and we decided not to try any new meds with Max for his seizures being they never work anyways and that Max is the one who suffers when trying them in some kind of way re: the side effects.

She also brought up a wake up pill that we could try for Max being he's been so sleepy during the day.

So we thought we'd try that but we got a call from Sugar Lake and that didn't work well. Oh sure Max was awake alll day but he got really stiff and red blotches all over. The nurses couldn't do any of his ROM and he couldn't stand in the stander for his hour.

So we decided to not give that to him anymore.

The next day he was still alittle upset so I told his nurse to tell Max that it's mom and dad's fault for trying that wake up pill and to not get mad at the nurses and to let them do their things with him LOL. (Cause I had said Max is probably mad at THEM for giving him that wake up pill)

We also ok'd for the Dr's (nuero's) to look at Max's chart and to follow his progress re: his autonomic dysfunction.

They want to do a study (that was started like in 1975 but was dropped) just to see the difference in brain injured kids of different kinds and how their autonamic function is affected by these injuries and then what was done to help them and how it changes as they grow older, stuff like that.

We thought why not. Maybe they can figure out some way to really help kids out in that area such as Max's baclofen pump helped him big time at the time he needed it but I think now he doesn't need the pump in that area.

Then we saw the dentist and Max did well again and had 2 teeth pulled out. I had to leave the room this time just cuz I didn't think they were really ready to be pulled but they were and there were no roots cuz the other teeth were right below them.

So he's got his bright smile back again for the next few months.

Then we had his pump filled and I had the nurse lower it just a little in the AM.

We are in the process of getting a surgery appt for his new one.

Todays a big day for a friend of ours. Not that graduation isn't a big day for a kid anyways but our friend Frank that had that snowmobile accident back in Feburary graduated.

His party is tonight and I have a feeling it will be huge.

After all Frank went through that month and then to make up missing a month of school is an awesome achievment.

And what a blessing to him and his family that he pulled through such a tramatic head injury and to see him graduate with his class.

Well that's my update for today.

My job is going well and I'll soon be taking care of patients on my own (kinda) where my precepter isn't standing right next to me. Kinda scary but yesterday I pretty much was on my own taking them off the machines cuz there was a new nurse being trained in at the same time and it got kinda crazy getting people off and on again so I just had to jump in there and do it.

I'm amazed at how all of this is coming together when just 3 weeks ago I never thought I would get the hang of all to remember to do. Though there's still lots of other duties to remember and I have to try and look outside the box on some things and not focus on just one thing but I'll do that later LOL.

Have a good weekend,
Lisa

Wednesday, May 30, 2007 6:24 AM CDT

Sorry I haven't updated in awhile. Didn't realize how long it's been.

Max has 3 appts today one with his neuro and then the dentist and then one to have his pump refilled and get ready for his surgery to have the pump replaced.

So I'll let you know how all that goes. Dr Wical hasn't seen Max for a year cuz of the weather this last winter and I was unable to get in sooner. But we really don't have much to say about him as far as his seizures being any different for the better or worse.

There still there and irritating as usual.

Have a good day
Lisa

Saturday, May 19, 2007 6:00 PM CDT

Hello and WOW what a beautiful day today was.

It was a very nice day to bring Max home and just hang out on the deck.

And that's what we did.

Max didn't have to much to say though today. He talked some with Jim when Jim asked him why he wasn't talking so I guess Max answered and then didn't talk his talk anymore after that til we were ready to bring him back to sugar lake.

Then he started to talk alot more when we talked of bring him back. Wonder if he was saying he didn't want to go back or maybe something else cuz I was talking about the van not working and how we can't really get him out an about without his wheelchair. But I didn't mention some things we could do and we could just carry him from the Jeep such as going out to Grandma and Grandpa's camp site or down to the beach and find a spot to just sit and hang at.

So I have Monday off I'll probably go back out there to see him again.

I forgot to take some pictures today so I don't have any new ones but I guess I can find some different ones so you don't have to look at the same ones all the time.

Work is crazy. I actually put in one of their long days on Friday and got their at 4:45 am and didn't get out of there til 5:45 pm.

They have 2 people that get put on dialysis at like 1 pm and run for 3 hours and then when their done we have to clean the machines and pm checks (stuff around the clinic) so I was able to leave and my trainer and the nurse were still there finishing up.

It's amazing how hecktic it can get around there. Kinda like a roller coaster where you going like crazy getting patients off and on the machines with cleaning them up and setting them up in between. Then there's a slow time for the next 3 hours with just doing charting and next day stuff or cleaning things or filling things up.

Then the rush comes again.

Just crazy and very tiring physically and mentally.

But I'm moving along and getting things figured out pretty well. Just that when I have a day or two off in a row I seem to have to learn a few things over again.

Well, thats about it for now again. I'll take some pics of Max on Monday.

Have a nice rest of the weekend

Lisa

Monday, May 14, 2007 12:52 AM CDT

Good afternoon,

Well this is the first day of my new schedule (at least while still training at the clinic).

I pasted all my quizes and also the final and got the CPR done last week. So, School is out for me for the summer LOL

I went and saw Max today and we went outside but I couldn't wake him up for nothing. He was sleeping in the stander when I got there.

So, I told him we'd bring him home on Saturday cuz he seems to wake up and perk up when he's home.

Ralph is home and doing much, much better. It's his birthday today.

HAPPY BIRTHDAY GRANDPA RALPH!!!!!

We saw Gracie on Sunday (Ezra's little girl).

She's adorable and is one chatty little girl. Just busy, busy, busy.

So, that's about it this time around. I need to get Max home and get hime going again. They say he's been sleeping alot during the day so maybe he's going through a growing spurt or something.

But, now that I have some days off during the week, I can get out there again and maybe he'll wake up more knowing I'll be seeing him again during the week.

Stay cool for the day. I hear it's going to cool down tomorrow and 66 degrees will feel cold.........to weird

Lisa

Sunday, May 6, 2007 2:29 PM CDT

Good Sunday Afternoon to everyone,

The sun is shining again and it feels so good. I know we needed the rain but I prefer rain on the weekdays not the weekends. LOL.

Just got back from seeing Max. He had an early lunch so our visit was on a full stomach so we didn't do much.

His pump is fine. We never did have to go to the Dr.'s.

I had talked with Kristin (Max's nurse from day one) and she said it looks fine to her and that she doens't know what all the hoopla is about.

So that was comforting to know that she thought the same as me. And she too can take away any fears that the other nurses may have letting them know it's always been like that.

But we are going to try and pump him up alittle in weight with the everyother night feedings (tube).

I have one week left of school and this one is going to be the tough and busy week with 2 quizs and the final and then we have to get certified with the CPR.

So I have a few things to get done around the house here and then study for one of the quizs for tomorrow. I hate Monday tests cuz Mondays are so hard to getting going anyways.

But after this week then I'll be at the clinic working the longer days but only 3 days a week. So that'll be nice to have some days off during the week to get things done and get out to see Max more other then the weekends.

Spencer is doing well in school still and is excited to be done for the summer.

Jim and I had heard that 7th grade is a tough grade so I hope he continues to do well and can still enjoy learning.

He found out the he likes track in the shot put area and short distant running (whatever that is called).

So we're excited about him finding a school sport that he thinks he'd do well in.

Ralph is feeling better mentally more now that all the drugs from surgery are wornen off. (he was confused there for awhile plus being placed in the nursing home so quickly)

But he still needs to get his strength back and walk more. He said they weren't walking him in therapy so Joanne is going to go with him tomorrow and check that out. Maybe their doing more strength excersizer with him first.

But he's anxious to get home no doubt, can totally understand that.

So that's it for this week. I suppose I should go hit the books (or papers in this case no books).

This week is either going to go really fast or just draaaag out with anxiety and stress.

Have a good week, I hear it's going to be warm

Lisa

Monday, April 30, 2007 8:46 AM CDT

Good Morning,

Well another week is here but I'm not at school today cuz I'm waiting to hear from Gillette re: Max's baclofen pump.

The nurses at Sugar Lake called with concern about it moving more then usual.

Jim and I couldn't figure out what they really meant so when I went out there to look at it, I think it's fine. Max isn't bothered by it and it isn't causing him any problems and seems to be working fine.

The pump is placed so close to his hip bone that if it slides or gets postioned over his hip bone it sticks out some. But the nurses say it will stay there and they would push it back in place and it would go back over his hip bone.

One thing I noticed when Max has his appts that his weight is down from last year so I think alot of that has to do with it and I had asked them to tube feed Max again at night around 2am every other night.

So if he would put a little weight on the pump wouldn't slide to his hip then.

But, I'll call and see what the Dr. says we should do. He gets a refill/and some kinds of nose swab to check for infection and then I guess a physical and then they'd schedule a day for him to get a new pump cuz they replace them every 7 years and it's already been 7 years this year.

Time just flies.

Also I would like to ask for Prayers for Ralph (though I'm alittle behind in asking this.)

Grandpa Ralph had spine surgery to unblock an area that was filling up and causing pressure on his nerves that made his left leg hurt and numb so he couldn't walk.

He's in the nursing home right now for awhile til he gets his strength back but surgery and all went fine and he's pain free.

So, we're hoping he gets back on his feet soon so he can get home cuz it's lonely for Grandma Joanne there without him.

Well it's 9 so I suppose I should makes some calls to see what we need to do with Max.

He was so tired yesterday when I saw him. He was out like a light but still would talk to me when I asked him questions and his lips would purse back and forth and he say his UH UH's.

I'll let you know what we find out if we need to go in.

Thanks for your thought and prayers for our family.

Lisa, Jim, Spencer and Max

Sunday, April 22, 2007 2:22 PM CDT

Good afternoon,

I have time to update cuz Spencer is at a friends house so I have the computer to myself for awhile without feeling rushed to get off LOL.

I went out to see Max today and by the time I got there it had gotten cloudy and chill so I didn't take him out side.

So we had a nice time chatting and doing some exercises.

He didn't have to much to say to me at first but started his talking once I talked more.

He was very alert when I was working and stretching his legs and would look right at his legs when I had them stretched up in front of him (while he was lying on his back).

I would bend his knees and grabbed his hands and opened them so he could touch and feel his legs and he'd watch me do this too.

I told him again how I was in school during the week so I could't see him then but that I'm done with cleaning the bank so we'd be able to see him during the week in the eves.

Jim and Spencer have been sick this week with nasty cold so they didn't go to see Max today (and spencer wanted to go hang with a friend so I thought that was more important for him to do)

I also told Max that once school is done that I would have more time in the week (days off in the week) to come hang and when it's nice out, go outside and get some fresh air.

Last week when we had left Max in his room and the nurse was in there, I heard her say "Max why do have such a sad look on your face?"

It caught me by surprise cuz I had just walked out of there after saying see ya later so it made me wonder if he was sad cuz we were leaving. Not that I would like Max to be sad but the thought that he could show emotion like that made me feel good and that he is thinking. Know what I mean?

So, Just waiting to get done with school but yet not wanting to rush it either cuz there is sooooo much to learn.

I passed my first test with 95% thought I could have gotten a 100% but the wording on one question through me off and the other was one where we talked about what we thought was the correct answer but the work sheet had a different answer and I thought that was the right one but the teacher reminded me how we went through it and figured we were right and the work sheet was wrong. WHAT EVER!!

Then we had clinicals Wed. and Fri. We learned to set the machines up (the tubing that gets strung on the machines).

So I did that at my clinic on friday (where I'll be working)

And I did some other things, writting down vitals and other numbers that we have to chart every half hour, also got to pull a needle out of someones arms. Kinda intense so not to let them bleed all over.

Well that's about it for this week. It was so nice out this weekend and now it's raining so things are sure going to green up now as I can see already. I'm glad I got my garden cleaned out of last years leaves cuz my flowers were struggling to come through them.

Hope everyone has a nice week and I'll update again next weekend after seeing Max

Lisa

Monday, April 16, 2007 5:54 AM CDT

Good Morning,

Just a quick note.

We finally saw Max on Sunday and boy did he have things to tell us. LOL

He was very alert and looked right at us when we talked with him and he talked back to us.

I explained to him again about my going to school and that's why I haven't been around during the week.

I'm going to be done cleaning the bank after this week (I only have tonight and Wed) so I told Max we'd be able to make it out more on the evenings during the week.

School is intense. I have a test on Tuesday and still have lots to study for. Very confusing so this may take me awhile.

I did get to go to the clinic where I'll be working and that was intreresting but again very busy and intense.

There were times I could have walked out but I realize I need to give it time and a chance before I make the decision as to whether this is for me or not.

I would like to know my schedule and exactly what I'd be doing but I find that out later I guess and just need to think about getting through this school.

I'll update more later once I get this cleaning job done with so I have more time

Enjoy the nice week I hear we are going to have
Lisa

Friday, April 13, 2007 5:43 PM CDT

Hello,

I don't have time right now to let you know how our life is going but stay tune and I'll update tomorrow morning.

All I can say now is that I've been missing Max alot this last week being I started school and I still have one cleaning job in the evening so there is absolutly no time for anything else (even making supper, beanie's and wienie's).

I'll update tomorrow after we see Max

Lisa

Friday, April 6, 2007 10:06 AM CDT

Hi,

I know I haven't updated in awhile. Been very busy with getting extra cleaning jobs done and training in a girl to take my day jobs.

Also trying to getting things ready cuz I start School on Monday (well actually I go to Coon Rapids for orientation and filling out paper work)

Then school on Tuesday.

I saw Max last Sunday and he was so cute when I walked in. He was on his therapy table getting his water and he looked right at me when he heard me talking.

I told him to turn his head to look at me and he did some what.

He was very awake and alert for me. Though he didn't talk to me to much. Guess he didn't have much to say.

We're going out there today to color Easter eggs with him and then tomorrow Shari wants him to horse ride.

But gee it's going to be so cold at 10 am when she wants him to come. I'm not sure if we should or not.

I know her arena is heated but just getting him there is hard without my van and having to carry him.

I feel bad if we don't cuz it'll be while before he goes again and with me schooling and working days I'm not sure how we'll get horse riding in.

I guess time will tell.

Well I have a list of things to do again for today. I went grocery shopping yesterday and of course my milk didn't come with me for some reason LOL. I don't see it on my receipt so I'm thinking the person behind me must've got it. LOL.

Stay warm and have a wonderful Easter Sunday.

I'll update again after the weekend when we see Max
Lisa

Monday, March 26, 2007 8:12 AM CDT

Good Morning,

Wow what nice warm weather we are getting. I hope it stays around now for the rest of the season right into summer.
Dah, what am I saying though. This is Minnesota, we could still get snow LOL

We had Max home on Saturday for his Birthday. Just a small gathering with Grandma Congo, Grandpa Ralph, Grandma Karen and the neighbor guys came to say HI to Max.

Max sure likes it when there are guys around. He seems to react to their voices more so then women. Guess he's tired of listening to us girls allll the time. LOL

He did snooze awhile before people showed up. We were kinda busy doing a quick cleaning so he got bored with us doing that and took a nap.

I tried to hold Max on the couch but the couch is not in the best shape and kinda low and sunk in so it was to hard cuz Max is so long (tall) now.

He gets botox on his arms this Tues. I have to ride with the medi van cuz there's no nurse to go with so this will be a long day for us.

He's going today to see his peds Dr. cuz he keeps having UTI's and his g-tube site is red off and on.

I have to get Max a new stroller ordered so we can take him for walks. He out grew his other one pretty fast. Guess I'll go right for the adult one and be done with that. But this warm weather is got me itching to get him out and about soon and if I order this stroller we may get it in time for an August stroll LOL. Just kidding, hope not. Just that last time it took quite awhile to get it.

So, I guess when we had the doors open this last Saturday being it was nice and no bugs out yet that some stray cat came in our house.

Jim saw it hanging on our curtain the other night.

Grandma Joanne was saying she smelled cat pee. Well sure enough on Sunday this cat peed downstairs in the laundry room and I too can smell it in the living room.

I'm so mad and can't believe with the comotion that was going on that this cat ran in.

So I opened the windows downstairs and closed all the doors to down stairs in hopes it'd run outside.

When I came upstairs I saw one of our cats doing the stalking position in the kitchen and thought, "oh is the cat up here?"

I peeked around the corner and nope not the cat but a BIRD STANDING ON OUR COUCH!

So Ratchet stunned the bird and I wrapped it up in a towel and threw it outside.

But last night (cuz I closed the windows and the doors to upstairs were open) that stray cat was upstairs peeing around the house.

Jim got up and chased him down again and I opened the window and closed the doors AGAIN.

I'll never know if this dang cat goes out or not. He'll probably come in during the day and leave at night. But I'm sleeping at night for cryin out loud. Can't be waiting for him to leave.

Well, That's that for now.

I have 2 weeks to get things done and planned before I start 5 weeks of school. UGHHHH!!! I'm still going to clean the bank too for awhile to make sure I have my finances right when I was figuring all this stuff out.

Have a wonderful week during this nice weather. I just heard colder on Fri. and it will feel that way after 70's

Lisa, Jim, Spencer, Maxwell (thanks for the birthday wishes)

Friday, March 23, 2007 9:18 AM CDT

Good Morning,

This update isn't going to be so much about Max this time around but about me.

That Dialysis job that I applied for I just heard yesterday that I got the job.

I'm excited but yet scared cuz my whole way of doing things is going to be totally flip flopped.

So I'm going over everything in my head that is going to change and how we're going to do it.

The dialysis would like me to first learn the Patient care Technician job that would be 5 weeks of schooling first starting April 9th ( so this is the date I have to start using my brain again LOL)

She (Mardelle) said she needs me to learn this first cuz more patients are going to be coming back from their sunny places from over the winter and some of the other girls have vacations coming up. See how they are taking advantage of me right off the bat LOL.

Then I'd learn the Dialysis assistant job.

So, I'll be putting in the 40 hours a week right away and having to get up at 4 am to get their at 5am (when they start).

Their shifts are 10 hours and if they have a 3rd shift I'd be working 12 hours. But I have to look at then I'd get my 40 hours in right away and have days off during the week. SO, I guess that's not bad. Work 3-4 days a week.

As far as Max's appt she said that when I'm a dialysis asst. it would be easy to let me have those days off but, PCT would be harder cuz of course I can't just leave when taking care of patients so this is where Jim comes into play.

Most of Max's appts are near Jim's work so he could just leave work and meet Max at Childrens West to go to his appts and after his summer ones are done the next ones I'll have to make later in the afternoon (when everyone else does) and then maybe it's be easy for me to get to them or Jim cuz he wouldn't miss work (or to much of it).

Once our Van gets fixed then that will be a different situation that we'd have to figure out and I guess I'll just wait til then to deal with how we'll do that.

I'm also going to have to depend on Max's nurses alot to maybe just go themselves without Jim or I and just Talk to the Dr. over the phone.

This will be a change for Spencer too. He'll have to depend more on Dad then me cuz I won't be able to take phone calls until break times. So he'll have to call dad if anything needs an answer right then and there or to call me, leave a message and I'd get back to him.

AND NO MORE NAPS FOR ME!!! I think I nap now cuz I'm bored with my life anyways so hopefully this job will give the boost I need to feel better about things.

Only time will tell I guess.

So, we're bring Max home tomrrow and I'm excited about that. It's been since Christmas so I hope he's excited too.

When we saw him on Tues. I noticed his roller coaster seizures aren't so loud anymore and he doesn't scream jut the big smile and some small noises.

Jim noticed this too. So, there's another change in his seizures.

I got him a poster of different puppies sitting in different colored high top tennis shoes.

He sure looked at that when I put it up for him.

Oh and Horse riding. I have no idea now what we'll do for that. May have to be on weekends and then maybe not every weekend.

Well, that's about it for now I guess. I'll update after Max comes home this weekend to let you know what we did and how he did. Hopefully it'll be nice out and we can get his wheelchair in the jeep and take him for a stroll around the neighborhood.

Lisa

Tuesday, March 20, 2007 6:35 AM CDT

HAPPY 10TH BIRTHDAY MAXWELL!!!!!!

WE LOVE YOU SOOO VERY MUCH AND I'LL BE OUT TO SEE YOU LATER TODAY AND DAD AND SPENCER WILL BE OUT TONIGHT TO SEE YOU.

THIS SATURDAY WE'LL BRING YOU HOME TO CELEBRATE AND PLAY AND HAVE OUR ICE CREAM CAKE!!

MOO AND BABY BELLE AND RATCHET WANT TO SEE YOU AND SAY HAPPY BIRTHDAY TOO!!

SEE YA LATER BUDDY!!!

LOVE
MOM, DAD AND SPENCER

Friday, March 16, 2007 7:54 AM CDT

Morning,

Yup Maxie has a birthday coming up here. He's going to be 10 years old already!!! His cousin Eza's is the next day on the 21st.

We won't be having a party for all 3 boys (Jeremiah, Ez and Max) like we've had in the past cuz everyone is gone, except us of course LOL. Well Jeremiah is back from his trip but....

I only got out to see Max on Tues. He was in the stander doing his standing. So we chatted alittle and did some ROM on his arms.

I plan to get out this weekend to see him some time. I have a three day extra cleaning job in the afternoon so maybe early Sat. or Sun we'll go see him.

We'll bring Max home next weekend for his birthday. We'll have to try and get his wheel chair in the jeep or his tumble form chair so we can feed him when he's here.

Trying to get all my stuff done during the next few weeks. I have the job interview on Max's birthday next week. So if I get it I'm free for awhile of appts.

I want that warm weather back and NOW!

I want to get new pics of Max to put up. I keep looking for some others to put up but just don't care for any of the older ones LOL. I like new pics.

So that's it for now. Nothing really new. Max doesn't have horse riding til the last Sat. of this month but we may have to cancel cuz Jim and I are going to do a construction cleaning job that day as far as planned for now.

I'll let you know how the weekend goes with Max when we see him.
Lisa

Saturday, March 10, 2007 1:47 PM CST

Good Afternoon,

WOW what a beautiful day to be out and about (well ok it'd better without the snow all around us but....) Can't complain or at least shouldn't.

I should be shoveling some snow off the deck and will when I'm done here.

So, What's new this week. Well having to have Max ride with those van services is no fun. There was screw up and after clearing all that up we finally got him to St. Paul for his pump refill.

Jim looked and messed around with the our van thinking he figured out what was wrong with it but it turns out that the transmission has gone out so...........we will have to use the van service til this spring til we can sell the boat and then use that money to fix the van.

We did take Max horse riding today though in the jeep. He was so cute sitting in the front seat. He actually looked comfy.

At horse riding the 2 Joe's were there to side walk and Max really likes the big boys. He looked right at them when we told him to find Joe one and Joe two.

He was very verbal and very alert.

Shari also had Pete (the horse) trot and Max got this huge smile on his face when they started to trot. Of course I missed it cuz I was looking down talking to Joe one and Jim tried to get my attention but I didn't hear him.

But I've seen Max smile before so it was especially exciting for Jim cuz I've always told him about Max's smiles and he's never really seen the real thing from him.

There was one other time during the ride that Max gave a quick smile that we all saw.

So, that was our day today. Spencer is at a friends house so I should clean the computer room while I have the chance without him in here.

If you haven't kept up on Franks site (the friend of ours son) He's doing AWESOME. I'm so happy for them and the fact that he's coming around to his ol self and walking now and talking and eating orally. I don't want to see anyone go through the BS (like I said before) that we have and still feel from time to time (like this van deal cuz we really need it now and such LOL.)

I also forgot that It was Jeremiah's birthday a couple days ago (Max's cousin) Gosh they are getting old LOL which makes me getting OLDER!!!!

HAPPY BIRTHDAY JEREMIAH!!!! ( he's in florida right now)

Well better get my rear moving while I still have umphhh

Lisa

Tuesday, March 6, 2007 7:35 AM CST

Morning,

Well that last snow storm screwed up some appts we had. Spencer and I had reschedule our dentist appt and Max had his pump refill for Friday but I rescheduled that for yesterday (Monday) and then there was a mix up on the van that was to transport him so we had to reschedule again for Wed.

I got alittle (alot) upset with the company that makes these van appts cuz they are the ones that screwed up and I told them that this appt is one that can't go on being rescheduled cuz it's a med refill and he needs it or he'll go through withdrawels.

Oh how I miss my van. It really makes my life more easier then I realized.

So I was out to see Max early yesterday cuz I was to be there at 9:15 to ride with him in the van (that didn't show up)

They had put him in the stander and he was awake for me. When I got there he looked right at me when I walked up to him and started talking.

But when in the stander he sure didn't want to stretch his arms out and around. He kept pulling (holding) back on me. He had his one arm stretched out and I told him to bend it and he did but once he did he wouldn't stretch it out again LOL. Stinker.

He was burping up his formula that they fed him in the morning cuz he's never awake enough to orally eat when he has a early appt. I've noticed that he seems to have more trouble with this. That stupid liquid just doesn't want to stay down well.

I suppose I should have them check into that more and to see if he needs his previcid upped or something.

I also reminded myself of his getting a new stroller for summer. Guess I better get going on that to so he can maybe this time get it in time for summer (unlike last time it took 3 months).

Oh so much to do (at times) and here I think I'm going to try and get a day job.

I won't know if a few weeks if I get this job or not for sure. They aren't interview til the week of the 19th cuz of the interviewer having meetings the next two days and then business in Vegas the week after.

Well, I should go and start my day. I had to rearrange my doings (day jobs) cuz of these appt changes.

I'm not changing Max's pump just yet. Maybe next time and maybe my van will be fixed by then. I don't need to have them lower it and he'd have trouble and I wouldn't be able to get him in and I can't (don't want to) count on this van service.

Max does have horse riding this Sat. Going to try and just lay him in the Jeeps's front seat. Not sure if the Wheelchair can fit in the back or not. May try but if to much of a hassle, I'll just carry him in.

Can't wait for these 40 degree weather to come and hope it stays.

Take care,
Lisa

Thursday, March 1, 2007 6:17 AM CST

Good Morning,

Just watching to see if school closes or is late. So far it's neither go figure.

But they may close early I guess.

Spencer and I have a dentist appt today but thinking I'll change that for the second time (due to weather). Thought I was going to do a construction cleaning job yesterday but didn't and that was why I had changed it from yesterday to today. Oh well.

Max has a pump refill on Friday (tomorrow) but is being taken by Medi Van being my van isn't working yet (wonder where that manual is. Haven't seen it in the mail yet).

I would meet Max at the appt. I'm assuming so far they are going. I've never heard of a Medi Van canceling due to weather. I may cancel due to weather myself LOL and just call Max's Dr. and talk on the phone about him and just let them fill it with no change. Oh come on I have 4 wheel drive now I should be ok LOL.

Guess we'll wait and see what happens. He needs to go other wise he only has a week to get in before his alarm goes off.

I saw Max on Tues and thought I had the chance to play with him cuz he was tube fed cuz he was so tired and sleeping when they tried to feed him. So, they fed him (tube) while in the stander.

Well, I was rolling him around on the floor and he puked alittle. OPPPS!!

He sure talked to me after that. I think he was yelling at me.

I felt bad but it wasn't alot and he seemed fine afterwards. Tired again and was wanting to sleep but wouldn't cuz I was there. I would say I was leaving and told him he could sleep and then I would walk away and look at him from behind him and he'd close his eyes. Such a sweet boy to stay awake for his mom.

Well, I have a big decision to make since yesterday. I got a job offer at the dialysis where I work. I would be a dialysis assistant and work 9-3 Monday thru Friday.

Then after that I would school for Patient care tech. but would only use that when needed but I would get the pay for that which is more and I could then possibly quite cleaning all together but maybe would still keep one job of cleaning just to make some extra money for awhile.

But 6 hours a day from 9-3 (or 8-2) would be sweet and they would work around Max's appt for me. He really only has 3 Dr.s he has to see and 2 of them are 6 months a time. I could have Max see the dentist by medivan and just let the nurse go.

Horse riding would have to be changed to later time in the day. That's something I'd have to talk to Shari about if she does later times riding. I would hope.

I'm really thinking of doing this. I need a change sooooo bad. And my brain is just mush lately (lately?) I just have to much time to think and I'm tire of working eves. I wouldn't get to sleep in on summer days but that's ok. I don't like to sleep in really (and I don't make myself get up cuz I have no reason to) cuz then my day is shorter and I don't get anything done and then it's time to go to work.

I would get benefits too. I haven't had paid vacations in 8 years.

Well, I need to think about this some more but it's a chance I won't get again and being so close to home.

Thanks for you kinds words from my last entry. See why I need a job change. LOL. Thinking, Thinking, Thinking. IT would also be nice to see Max in the late afternoon or eve cuz when Jim goes out there at these times he seems to be more awake and JIm and I can go together.

Stay safe today if you go driving.
Lisa

Friday, February 23, 2007 9:07 AM CST

Morning,

I have new tires on my Jeep so at least now I can go out and see Max which I need to today before the snow flies and I'll be to chicken to drive out there even if I have 4 wheel drive now LOL.

I don't need any more guilt then what I have going on right now in my head.

As I told you I canceled Max's neuro appt on Wed. cuz of the van not working and I didn't think I could get a medivan set up to take him on such short notice and I haven't used them before (which I guess they have at one time cuz the nurse told me that they did take Max on an appt once when we were on vacation).

Well anyways, that wed. night Max had a huge seizure that lasted 25-35 mins. Not that going to his appt would matter being that was in the am and this was at night on wed.

And I was (maybe still am) planning on not doing any thing different for his seizures. I'm so sick of them and every thing we try doesn't seem to make them better.

They had to give Max his diastat to stop this big seizure. It was the one where his left arm and leg just twitched and head turn hard to the left.

This twitching movement is kinda new but not. It one we don't see often and when they started we thought maybe it was Max trying to move. Well at least I was thinking and hopeing that.

So I'm feeling guilty not trying harder to get him to his appt with his neuro that day. Been trying to reach her by phone with no luck.

Then yesterday cleaning my day jobs I just was thinking so hard about Max and his appts and how I'm just upset by them cuz they really aren't helping Max at all more of just waiting for something to break on him and then fix him.

Such as his ortho Dr. seems we just go to see if his spine curves more or other hip pops out then they fix him.

His nuero appts seem such a waste of time. Nothing seems to help with these seizures he has and I can't see just piling on more and more meds.

I finally just hard to break down and cry really hard cuz I know that Max isn't really fixable in the long run.

I'm just tired of the same ol same ol stuff and talk with these Dr's. Don't get me wrong, they are very nice and carrying Dr's. I just know exactly how each appt. will go each time them come around. The same questions, the same answers, but no great conclusion as what to do or just wait til something happens that really needs fixing.

But I did do this breaking down and crying in a good place. I was cleaning the church LOL. Guess you couldn't ask for a better place to sit and reflex and ask for help with this whole life we're living that some days I still just can't handle and still ask that question as to why this happened to my wonderful cute little red headed boy.

Jim, Spencer and I saw this red headed boy at the gas station that was about Max's age right now and we go through the I bet he'd look like that now and stuff like that.

I had a dream last night about Max too. To make it short Max was looking at a magazine and we were going to order some toys out of it and I had asked him which one he wanted and he said " I want that one and that one and that one". I told Joanne this in my dream and she said "well that was just like Maxwell would do" So, he must've been post accident in my dream but he was sitting up and being fine.

Maybe I should take a magazine out there today and show him and see if he does that for me. Wouldn't that be a surprise and make me feel better.....for sure.

Well anyways, I had to get this whole guilt feeling and the Dr's appt thing off my chest.

I know my updates always sound like we are doing fine but deep down we still aren't all doing that great and hold alot in. Even Spencer at his school conference yesterday on one of the things he needed to improve on (it was 5 things like school, social life, fitness and family) He said in family that he needs to get out and see his brother more at sugar lake. So, deep down I think he's feeling guilty too in his own way.

But Spencer is doing very well in School. Did I mention he made the A honor roll this last quarter. We're very proud of him. I was watching him walk home from school yesterday and wondered where did the time go. Seems he was just a little boy not to long ago (ok, you know what I mean by little LOL. Spencer's never been little for his age but he was little at one time)

Oh and if you haven't read Franks update. He's doing very well also. He's waking much more. He's answering the famlies questions with nods and smiling and squeezing hands. There' working PT on him and are going to have him sit up 2x aweek.

I just don't want to see anyone go through the BS (excuse my french) that we are going through. It just wears and tears on you no matter how much time has pasted.

Well, I should get going while the time is still here to do so.

Thanks for letting me vent and putting up with my sobbing thoughts.

Hope the snow doesn't hit us to hard. I do have to work tomorrow in Champlin and Jim doesn't want to live at his work all weekend shoveling the walks LOL

Lisa

Tuesday, February 20, 2007 7:48 AM CST

Hello,

Well, I don't have a whole lot to say this time around. I was lacking a vehicle for while. The new Jeep we got had not so good tires and a small nail in one so I was afraid to drive far (just to my jobs) with it. While the Van has transmission leaking and that seemed to only want to go forward when it wanted to. And the transmission seemed to leak out faster which would mean I was't sure if it would go at all if I would leave it parked some where for any length of time.

So, I have to cancel Max's Neuro appt for tomorrow and set up some kind of transpotation for Max's pump refill appt coming up March 2 with Medi van and figure out how that works and who pays.

Jim's waiting for the manual he ordered to figure out what and how to fix the van and lets keep our fingers crossed that he can, it's just that (leaking) and not a whole transmission gone out.

So, I have new tires on the jeep and can drive outside of Buffalo LOL.

I think I'll just talk to Max's Dr. over the phone this time around about his seizures and set up another for this summer. Nothing has changed really so. But I do know she likes to reset his VNS that he has in. I really think we should figure out if that thing is doing anything for Max's seizures and if not take it out.

I have a cleaning job this Sat. so I can't take Max to his horse riding and Jim can't with the van not working well. Actually I would take him (give it a try anyways) in the jeep and just put him in the front seat and lay the back down and carry him inside. It's not like we have to walk miles as if going to his appts. and having to park in those ramps.

So, well see where were at next time around for riding.

Max had a good IEP from school for the most part. His physical therapist talked about his muscles and the tightness in some area's and lack of head control. Things I knew but hate to hear about or say out loud.

His speech and vision was better and we talked about Max and how he's different each time they see him and his responses to their lights and stories and stuff.

So all in all physically Max is holding his own but does have some issuse but mentally he's got quite the personality in his own way and shows us.

Well, I'll be going out there to see him today and now can get back to my routine of seeing more during the week now that I have a car that I know (ok, lets not say that out loud LOL) will get me there.

Take care,
Lisa

Monday, February 12, 2007 10:20 AM CST

Good Morning,

Once again a Monday is here. Time just really flies by and of course the weekends aren't long enough.

Well, I saw Max last week but his schedule was off so he was just getting out of the stander (napping in it) and finishing his water so when he was visiting we me he had lots of seizures cuz of just waking up.

He did some talking to me later.

His horse riding went VERY VERY well. My van was acting up so we didn't get out to Sugar Lake early like I wanted to so the nurses gave Max some good stretches and it paid off cuz when we got him on the horse he didn't cringe at all from not being on so long.

We did give Shari 2 roses in memory of 2 of her horses that had passed away since last time we rode.

Max gave us some really nice pleasant looks and I think he almost tried to give us some smiles too. I could just tell by the look on his face and his lips half curling up. It's one of those Mothers just know thing.

He did talk alot at first also. Before we even got him on the horse he was saying "UH UH's" one after the other.

I assume after riding and seeing how well he did those "UH UH's" weren't that he didn't want to ride. LOL

His head control wasn't the best but there were a couple times when we asked him to find Dad or that Dad was taking a picture that he tried real hard to lift his head and got half way.

So sat. eve we played the SuperStars games again. Where a team of 10 (5 guys and 5 girls) play silly games and I mean silly games at the high school in Howard Lake.

It's alot of fun and our team won two trophies (handmade wooden things but have quit the character put into the work whoever does it).

They had like 64 teams that night. So 640 people in the school and running around the gym at one time for one of the games. Scary

I don't know if any of you are checking in on Franks site but he wasn't far from our thoughts that night even though we were playing.

Having his cousins and friends around us all night and seeing a group that had T-shirt saying "FOR FRANK" (cuz your teams are to wear Matching shirts with saying) Kept us smiling knowing Frank is in our hearts always even while at play.

His site said that he's been doing well with just small things that are being treated with meds (slight high blood pressure and a little pneumonia)

They are going to wean him off his sleepy meds here soon but, of course slowly.

So very anxious to hear what happens when that starts.

I also got an email from a friend from High school. She said that another fellow classmate had a heart attack last week and has no brain activity at all. So, her husband has decided to take her off life support. She has 4 kids.

I'm just shocked to hear that being she obviously is my age and being a women having a heat attack.

So, a mixture of good news, bad news for this update.

I can't wait for Max to ride again. And I have to admit the arena wasn't cold at all to us. So, excited to go again which will be in a couple weeks.

Take care, I will update this coming weekend. Spencer is going snowboading at Powder ridge on Friday for the first time with his class from school. I'm excited for him but nervous cuz I'm his mom and that's what we do.

I also have Max IEP for school tomorrow. It's always pretty much the same but excited to hear what they have to say about Max.

Lisa

Monday, February 5, 2007 12:48 AM CST

Hello,

I don't have much to update on being it's been so cold and I cancelled Max's horse riding for Last saturday cuz of the cold temps and only getting a high of -8.

And I haven't been out to see Max cuz I thought I was getting the cold last week (only saw him on that Monday and then Tues. thought I was getting a nasty cold that Spencer and Jim had)

I'm going out there tomorrow and Max has a riding session this Saturday so hopefully it'l be warmer.

I do have a very special request to ask from anyone reading this today and in the next coming weeks.

Dear friends of ours, Jill and Dale, son, Frank 17, had a snowmobile accident last Saturday evening.

He suffered head injuries that we are now waiting to hear that all will be fine and no brain damage will happen.

From what I've heard so far is that everything seems to be going in Franks favor and when pullled out of the drug induced coma he does respond appropriate but then gets fisty and his heart rate goes up so they put him back under.

The bleeding in his brain does appear to be surface and not deep and they are watching the swellling in his brain with cat scans every 6 hours and they are taking out fluids that are building up in his brain.

It's the next 72 hours that they are waiting for to see more of the outcome.

My heart just aches for them knowing what Jill and Dale are going through (and their other 2 children).

Laurie said that when she was down there all the beeps and the hospital smell, etc. just came flooding back to her (when Max was in PICU).

And that waiting, just that waiting can take such a toll on the parents. And that feeling of helplessness and not being able to do anything to help.

So if I could have everyone say prayers for them throught the days to come. Just a quick thought of him would so much be appreciated from them.

Frank is such a good kid. Jim and I adore him so much cuz he's always polite and we use Frank as an example to Spencer.

The one time that most sticks out to me was when Frank and some other kids and spencer were playing football in the pool and the other 2 boys were in football and quit competative unlike Spencer. Frank picked this up and really encourage Spencer to jump and would throw him the ball made sure Spencer would get time with throwing the ball around.

I know it may not sound like much but to me seeing this older boy taking time to make sure Spencer didn't feel like an outsider and not one of the sporty guys sticks with a mom that was always concerned for her son and having fun with the other kids.

Thanks again for taking the time to do this for us. It's wonderul to have this site to not only let you know about Max but to help others with a prayer chain when needed.

Lisa, Jim, Spencer and Maxwell

Monday, February 5, 2007 12:48 AM CST

Wednesday, January 31, 2007 8:04 AM CST

Oh good morning,

I couldn't hold off getting the crud that Spencer and Jim had. So, here I am feeling miserable and just waiting to feel worse LOL

I was feeling fine on Monday when I finally got out to see Max. So with all my kisses on his face I'm sure he'll get it also but praying hard that he doesn't.

We had computer problems but between Jim and I we got it running again. Keep your fingers crossed that we did it right. Believe me it took a couple tries.

So, I told you last time that I would get some good news to share with you from Max the next time I see him.

Last week I had an extra cleaning job that took me 2 days (one day Saturday) to clean and then Jim and I had to get his car on Sunday in the cities cuz he found me a new Jeep so I can park Max's van and just use for him SO I didn't get to see Max last week (of course now with the cold I'm probably not going to see him again the rest of this week

Anyways, So when I went out on Monday to see Max he had just finished his water and we went and sat in the couch and Max had one of his roller coaster siezures but when he was done he had this BEAUTIFUL SMILE on his face that stayed like forever (to me anyways being I don't see them often)

But when it started to fade I jiggled him some and tickled him under his arm and the SMILE CAME BACK!!

I was even talking to him about it and he'd look at me and then look around.

So when it did go away and I couldn't get it back, we started to practice his head control. So I let his head drop forward and bounced him on my knees (trying to immitate horse riding. AND SURE ENOUGH HIS SMILE RETURNED!

I picked his head up and there it was. He was looking around and at me smiling away.

This happened a couple times. Then when I just asked him to smile he gave me the Elvis smile but it wasn't the snarl one. It was like he was really trying to smile again but only half of it would show.

Ok so we took a break from practicing head control and I laid Max down in my arms and we just sat and chatted. I was telling Max I was having a bad hair day and told him to look at my hair. He was looking at my face and when I told him to look at my hair, I could see his eye's look up to the top of my head (we did this a couple times and I got the same response with his eye's each time)

I told Max I know you couldn't care less about my hair probably I was just making conversation LOL

Then Max was making his UH UH sounds and I asked him to make a long UHHHH sound. It took a couple times but he made a UHHH sound. Not as long as I was asking but it was different then the UH UH. But he made the sound loud. Took me by surprise.

Max was very alert that day and actually looked at me alot. Unlike those days he'd look to the far right or left when I talked with him.

So he sure made what usually is a cruddy Monday a very uplifting and energizing Monday for me. Of course many blessing too knowing that Max is very much with us and working hard to let us know he understands but just takes him a while and maybe the right days.

Of course I didn't have the camera and even then I didn't have anyone to take pictures. Or try to explain how to work the camera fast enough.

I forgot to mention that we went to a benefit a couple Sat. ago for a little girl that was being held at Buffalo bar and grill. We did the silent auction and won a couple things. It was fun and they had a good turnout. The little girl was diagnosed with Cancer and had a tumor removed and doing chemo now.

I was watching the dad and I was told he was crying the whole night. I felt so bad knowing what he was going through and how emotional the benefits can be. All that love and support for his little girl is so awesome.

Also I forgot to mention that the mother of the children, who now own the Medina Ballroom where Max had his benefit, had passed away a weeks ago. The Raskob children took over the ballroom after their parents retired and they are the ones who offered to have Max's benefit there.

So are thoughts and Prayers are with them.

Max is to start horse riding again this Saturday but I cancelled and rescheduled his Dentist appt for today being it's soooo cold. But Saturday is to only get up to 0 so I'm thinking I should ask to reschedule his riding too. Though I'm so excited to start again. But I don't know how warm the arena would get. I can't imagine it could be that warm when the temps outside will be way below 0.

Well, I'm so glad I was able to get on the computer and tell you about Max's smiling. Keep you fingers crossed that he can do this more often for us and be a progress that will let us know when Max is feeling well and having fun.

Lisa

Thursday, January 25, 2007 7:38 AM CST

Morning,

I don't have a whole lot to say. I haven't gotten out to see Max this week yet because I have an extra cleaning job and did some of it yesterday and today I have my day jobs to clean and tomorrow I doubt I'll go see him cuz Spencer is really sick with a cold and I want to start my jobs tomorrow early and get them all done cuz I have to finish that extra cleaning job on Saturday (it's my employers rental house, one of them, he has many).

Yeah so Jim and Spencer have nasty colds so here I am spraying everything in site that they touch so I don't get it or at least trying to avoid getting it. Their colds last maybe a week and if I get it I'm guarenteed 2 trips to the Dr. and 2 different types of antibiotics cuz mine lasts for 2 months.

All of us did go out to see Max last Saturday. Max was in the stander wide awake so it was nice to see his beautiful blue eye's.

He sure like to look at his brother. Or should I say trys to look at his brother cuz Spencer's hair is all over his face LOL

I played with him some in the stander. He didn't like me doing his ROM on his arms. I gave him a candy cane to suck on for awhile. We practiced head control.

Max talked with us some too. The nurses said he's been eating orally really well (knock on wood). So I was glad to hear that.

I'll have to get out there on Sunday and get there at a time when he's not in the stander so I can hold him. Lately I've gone out there and he's in the stander.

I'll have to bring the camera and get some new pictures also.

So, That's about it. Not a whole lot to say this time around. I'll give Max a good work out on Sunday and get some exciting news for you out of him :o) I'd bring him home but doesn't look good for this weekend with the other two men being sick in the house so......

Stay warm, heard it's going to be pretty cold this weekend for a high.

Lisa

Wednesday, January 17, 2007 8:00 AM CST

Morning,

Notice I didn't say GOOD morning. I'm kinda crabby today. Your son doesn't have the right to be picky about his breakfast at 6:00 in the morning. Doesn't sit well with MOM!!! LOL

Anyways................

We did finally get Spencer a birthday party last weekend and went to Grand Slams with a couple of his friends. They had fun from what we could tell.

Saw Max yesterday and he was in one of his moods. Oh we played some with lights and he looked at them and he talked to me but when I was talking to him and asking him to look at me he would do that looking down to the right.

But when I quit asking him to look at me when I was talking to him he would look around. So I guess he was just sick of me asking him. He can have his attitudes when he wants so that's good, he can make choices from what I have noticed.

He was sleeping when I showed up and he woke up right away when I walked into his room and stayed awake. So he did have quit a few seizures for awhile.

I finally called Shari, his horse riding teacher, and she said that she was busy between Sept-Dec which I figured and totally understood cuz we were also.

She plans on starting up riding again but pretty much only on Saturdays and not ever Sat. would Max ride. She's short side walkers til summer and when summer comes she can add more riders and different days during the week.

She said she would like Max to ride (though she was picking those who didn't need side walkers) I told her that we have noticed a diff in Max's head control and such since he's stopped riding and that he got cowboy boots for Christmas! So I was glad that she wants him to start up again.

So, though she said Max has some rides left, I'm going to have to start brain storming to make some money for his rides cuz like I said Jim and I really think this helps Max and if we could just get a good long stretch in of riding with no stopping I think we'd see some changes that stay with him.

Well that's about it for now I guess. I thought there was something else I was going to say about Max but can't remember.

Max's next appt is the dentist (which I hate even though he does well) at the end of this month. He does have one tooth in the front side that is growing over the other but it's loose, just doesn't want to fall out. You can see it on the pic that's on the front of the web site.

Every one else in our family is doing fine. Grandma Karen seems to being keeping busy with house rearranging and outside friends get togethers. Keeping her mind busy so she doesn't have as much quit time to think, which I totally understand.

Ez's is doing well in Korea from what I hear. His Daughter Gracie is adorable and very very smart and talks up a storm to ya.

Ok, well, I'll update again soon
Stay warm,
Lisa

Tuesday, January 9, 2007 6:38 AM CST

Oh how morning comes to soon. I try so hard to go to bed earlier when I can but don't. I had to stay up and see Betty White on Jay Leno. I think she's so funny.

Well, our weekend didn't go as plan but then what's new. I'm glad we didn't go to Powder Ridge. One of Max's nurses Daughter went tubing and said that the hills were hard packed ice and her daughter fell off the tube and got a big knob on her head.

Spencer is inviting some friends over on Saturday and he wants to do something other then sitting around the house so we'll take them to grandslams to play there I guess.

Max is doing about the same. He was gunky yesterday from eating so I made him cough and then he was fine. He was in his stander and then when he got out of that he had to have his water so I didn't get to play with him much. But he talked with me.

I'm going to go out early tomorrow and spend a few hours there. Then I can get him when he's in the stander and then just talk when he's getting his water and then maybe I can work with him some after that.

Grandpa Ralph's daughter passed away per her choice to give up dialysis. So, going to the funeral today. So prayers are needed for Joanne and Ralph and his family to help them through this rough time.

We all knew his daughter from long ago when we all worked at the nursing home. Ann worked in laundry/housekeeping. And I used to hang out with Ann's daughter. So we know the family well.

Almost time to get Spencer up for school so I should go and get my day started. Spencer has an concert tonight.

Stay warm. Heard we're getting a cold blast coming here this weekend.

Lisa

Thursday, January 4, 2007 6:30 AM CST

Good Morning,

Well, it's one more celebration we have today and for the next couple weekends (LOL) til March anyways.

It's Spencers Birthday today and he's 12 years old ALREADY!

Man is he getting old.....oh wait, that would be me getting old.

So our 12 year old is 6 feet tall and 190 lbs. I think he's catching up to his height in years (LOL)

Spencer wants to go to Powderridge for snowboarding and of course Jim and I would ski. That thought scares me cuz I haven't skied since just out of high school and even then I wasn't that great. I just bought the stylish outfit and would stand at the top and try and look cute and then bomb down the hill when no one was around LOL. We'll have to see what the weather is really like though cuz I hate to spend all that money to snowboard/ski on slush and ice. Remember it's me that's getting older too and breaking things comes alot easier.

He also would like a friends party next weekend (it was a short week this week in school, 3 days, so kinda to late of notice to have it this weekend.)

So things are still up in the air on what we'll do for his birthday.

Then he's given me a list of things he wants plus money. Good gosh I just spent a ton on Christmas for him and now this LOL.

Oh how I miss them when they we're little and I could get by with just cheap stuff and they were happy to get that.

Which brings me to Laura's guestbook entry. I do so miss those days when the boys were 3-5 years old and there interests were so open to anything and you could entertain them with just about anything from sticks to rocks, paint, making a mess while making cookies. Just stuff laying around the house. With a break with them watching Blues Clues.

I tell everyone when we talk about our kids and they have younger ones that they do grow up fast and to enjoy every minute of them at this age. I remember I couldn't wait til they were more independant and could entertain themselves. Now I find myself worried that I'm not in their lives enough and rack my brains trying to find a common interest with them.

Max and I found a common interest yesterday while I was holding him in the recliner. He fell asleep in my arms and I thought "oh, there's something I can do with you" LOL

He was very alert while I was visiting him. We did some head control and range of motion with his arms. I didn't have to much time with him cuz I had to run some of his urine to the Dr. for testing again to see why his UTI isn't clearing up.

I thought we'd go see him this weekend when I didn't feel the need to rush home for some reason and really have some time to work with him.

I'll update next week after we figure out what we'll do for Spencer's birthday and if we do go to Powder Ridge (or maybe not if I break an arm LOL) and go see Max.

Lisa

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