The Lowdown...

Sorry for our lack in posts lately.  There really hasn't been too much that is "blog-worthy" lately.

Christopher did get his casts off on Sept 9. It wasn't as bad as we anticipated. His legs actually looked like he had just come back from surgery.  I was surprised that the incisions hadn't healed.  They have since healed nicely. I'll post some pictures of that below.

He had another seizure a couple of days before the casts came off. Another bizarre one. These last few almost look like how you will sometimes jerk just as you are falling asleep.  Except he does it hundreds of times. In between "jerks" he will normally look like he is trying to come out of it but will whine. This time, it was obvious that he was totally conscious! He would grab our arm and hold on like he was trying to stop the jerking. He would try to say "Mama" or "Dada" and would usually get cut off by another jerk. He was trying to sign "All done". Those aren't things that he would/could do if he was in "seizure fog".   It lasted for about 15 minutes.  Then just stopped - no easing out of it.  He will normally go right into a deep sleep after a seizure....this one he sat straight up and wanted to hug and kiss both of us.  He laughed and clapped his hands, then signed "Eat!" and grabbed for his feeding pump. 

Ever since that seizure, he has been a talking fool! He used to babble all of the time "dadadad" etc.  After he was really sick about 2 years ago, he never started it again. Now it is back! He is suddenly gaining a little weight (no ribs showing). He LOVES to count. He can count to "tree" (three) by himself.  He is counting to ten with me. He counts to three, I say four and five, he says "sic" and tries to say seven.  He is also trying to say eight, he lets me do nine and he will do ten. Then we clap. :)  

The house STILL has not sold.  We are getting a little desperate here. We have had one showing the entire month of September. We dropped it $10,000.  I am not sure what else to do.  We do NOT want to be here for winter.  Almost everything we own is at the other house already.  We just can't move in yet, or we will have to pay rent.  We can't afford both.

Big Chris started a new rotation at work.  Not many of the people out there like this rotation, but we LOVE it! He is working 6 a.m. to 6 p.m..  One week he will work 2 days, then have 2 days off, then work the weekend (Friday, Sat, Sun).  The next week, he is OFF 2 days, works 2 days, then has a 3 day weekend.  Sooooo much easier to plan appointments around.  He doesn't know it yet, but he is going to start participating in homeschooling.  Christopher sometimes does much better when Dad asks him to do things.  We are going to be taking advantage of that.  

Otherwise, we are just running, running, running all over the state.  Now that the casts have come off, Christopher is going to PT at least once a week in Chicago. He is doing REALLY well, and their goal is to get him to be able to at least climb 6 to 8 stairs (the amount that we have in our new house). They are going to order us a new stander that is properly fitted for him, and hopefully I can post about ordering a walker soon.  We will see.

This next week we go to Peoria on Monday to meet a new (to us) Pulmonologist.  If we like him, we are dropping pulmo in Milwaukee. I would feel more comfortable with a pulmo in Peoria anyway, as that is where his cardiologist is. On Tuesday, we go back to Chicago for PT again. Wednesday we have a home visit for our waiver program.  She needs to see our new house.  We are waiting to hear about an adventure that will be a separate blog post..... If that doesn't happen, we will be hitting the paint brushes at the new house on Big Chris's 3 day weekend.

Here are your pictures!

Before Surgery (Crazy Legs):

After Surgery (Grover Legs):

Casts Off Day/ Straight Legs!:

Hugs!

Steph



All the Goings-On....

Well, we have been jumping through hoops trying to get this surgery scheduled.  Long story short, we have a surgery date!  It looks like it is going to be July 26th.  I am MUCH happier that it will be on a Monday vs a Friday.  Not knowing how Christopher is going to respond to this, I feel much better knowing there is a full staff.

Another end result from all of this is that we have dropped another doc in Wisconsin.  I am not even going to go into that fiasco, we'll be here all night.  We have appointments both in Chicago and Peoria to interview new Pulmo docs. We also got on a waiting list for a new endo doc in Chicago. I am not impressed with the one in Peoria - that is why we left her the last time. That only leaves Genetics and Nephrology (kidney) docs in Milwaukee. We can handle that. We like both of those. We also don't want to completely cut ties, just in case we need to go back for GI issues. Everybody else is either in Chicago or Peoria. Both are only a 6 mile difference in drive for us. We'll take that! :)

Otherwise, we are still putting the finishing touches on the house to get it up for sale.  Should be up for sale before the end of the month.  Pray for a quick sale (but not too quick - I don't want to have to move during Christopher's surgery. LOL!)

Last, but never least  could you please say some prayers for Kristen and her family?  Kristen has fought leukemia FOUR TIMES!!!!  She just had a bone marrow transplant, and they have just found out that her leukemia is back.  Please say a prayer for her family that this transition be as easy and peaceful as possible for Kristen.

Hugs!

Steph

Mr. Crazy Legs

This is sort of a continuation of the last post.  This past week, we went back to LaRabida to meet with PT/OT and then an appointment with our Orthopedist.

We were on a mission to figure out what to do about Mr. Crazy Legs (see the pictures in the last post).  We started out in the big gym, which we normally don't do because of germs.  Christopher was having a ball!  He was checking out all of the other kids, many of whom were in pain, and I am sure he was thinking "better you than me bud!"  :( 

Anyway, we spent the better part of 2 hours having pictures of his legs taken in various angles and positions.  They wrapped and braced, dislocated and reduced joints...the child quite possibly had almost an entire 100 foot roll of Velcro wrapped around him from the waist down.  I didn't get pictures as it took four of us to get and hold everything in the correct alignment.

Then we had our appointment with Dr. Sullivan, our ortho.  We were the first appointment of the half day clinic, and he was an hour and 45 minutes late.  He was in surgery.  He swoops in with his entourage: his nurse, clinic nurse, PT, OT, and a couple of residents.  They all take turns examining Christopher, bending his legs into positions that would take serious drugs to be able to pull off with normal people.  Christopher was so good!  He just laid there playing with his toys letting them bend him like Gumby.

The Verdict:

First the good news: Dr. Sullivan thinks that Christopher will eventually stand on his own, and may even be able to walk short distances.  He most certainly will be able to eventually crawl.  Standing was my biggest issue.  If he can stand, he can help to transfer from his wheelchair to the bed, chair, toilet, etc. 

Now the bad news:  In order for that to happen, Christopher will need some pretty significant surgery and heavy duty braces, possibly for the rest of his life.  The braces I don't mind.  I am not terribly excited about another surgery. The fact that this is going to have to happen sooner rather than later doesn't help. 

Since our last visit, about 3 weeks ago, Christopher's lower legs have gone from pulling out to a 30 degree angle to about 50 degrees.  If we do not get the surgery soon, his legs will be permanently misaligned.  Things are moving too fast to even consider doing this with braces or tape.  Even 3 weeks ago, they could put his kneecaps back into place with effort. Now, they don't go at all.

The surgery will consist of the doctor cutting or "releasing" the tendons around his knees.  He will tighten some and reposition others to stretch them.  He will also be repositioning Christopher's kneecaps (patellas) and sewing them into place so that they don't dislocate anymore.  Then Christopher will be in casts from hips to toes on both legs for 4 to 6 weeks.  Pray for no GI issues or blowouts during this time - that could be disastrous for all!  Ha!Ha!

Dr. Sullivan is nervous about this surgery.  He is a VERY conservative Ortho surgeon.  Surgery is always his last option.  We have passed GO and he is collecting our $200+ this time.  He made the comment that he is always nervous operating on kids with Down syndrome.  He has had a few that have had bad seizures going in to or coming out of anesthesia.  So, I pipe up and tell him, "That's OK, he already HAS seizures!"    
NOT HELPING!

The result of that is that Christopher's neurologist is going to be there as well. Anesthesia really is one of the most dangerous things for a child with seizures.  We meet with the neuro on Tuesday and will have more information after that.

We also discussed with Dr. Sullivan the fact that Christopher was supposed to have the muscle biopsy in Milwaukee soon (on cue - Milwaukee called my cell in the office to schedule surgery!).  Dr. Sullivan said that he could do the biopsy if we wanted, but his concern was that Christopher has such a small amount of muscle.  The biopsy needs to be the size of a sugar cube.  A sample that size would almost sever his quad muscle (your front, upper thigh muscle) in half!  For you or I, that would heal and we would recoup.  For Christopher, he is concerned that he will NEVER heal and that would mean that there would be no chance of walking and make it very difficult to stand. 

So, I am leaning towards not doing the biopsy at all.  I am not sure that we will get any answers from it in the first place.  I would rather fix his knees right now, and go back in the future if we think it still needs to be done.  Maybe by then, we can figure a way for Christopher to build up more muscle.  The problem is, we don't know if he CAN make muscle. 

The surgery in Milwaukee was also supposed to include a dental exam, a bronch, and an EMG (muscle tests).  Originally, Dr. Sullivan was going to try to find somebody to broch Christopher during this surgery for us.  I have decided that is too much.  We have made an appointment with a new pulmonary doc in Chicago.  We will deal with a bronch later.  We really like our doctor in Milwaukee, but it is just so far to go.  The EMG is a test to see if the messages from the nerves are getting to where they need to be.  We WILL be asking our neuro to do this test.  We think it is important information, and we are at a point where we need the info to plan our therapy effectively.

So, surgery is tentatively scheduled for June 11, 2010.  They will most likely be putting him in the night before the actual surgery to give him prophylactic antibiotics because he is a heart kid.  That will allow us to get blood work, chest x-rays, etc done that we would have to do the morning of... Normally, this would be a surgery that they would do a 23 hour hold for.  We are not normal.  :)  We are probably looking at a 4 or 5 day stay, to get Christopher back to baseline and because the surgery will happen on a Friday.  I expect he won't want to release him until Monday.

While we LOVE our doctors in Chicago and the hospital, it is a GIANT, expensive pain to stay there.  All of the parking garages are owned by the City.  The DISCOUNTED parking rate in $33 per night.  I am a brave person and grew up in some not so nice areas of town, but even I am not brave enough to jump in my mini-van &  cruise the south side of Chicago to stop at Harold's Chicken Shack or Chef Alfredo's for dinner!!!  The one cafeteria is 4 buildings away.  We will have to pack stuff to take with us.  They do have fridges & kitchens on each floor.  Still.....pray for a short stay, or we will have to start hocking body parts in order to afford it (We'll start with Big Chris - LOL!).

Well, we will update after our appointment on Tuesday.  We should have more information then.

Hugs!

Steph

Playing Catch-up!

WOW!  The last two weeks have been crazy around here. Things have been really up and down. 

We are trying to go through things, throw out what we don't need, pack what we don't need right now, and finish up small little things to put our house up for sale.  While we are getting rid of a TON of stuff, everything is torn out right now.  Our house almost looks worse than when we started!

The last 5 days have been particularly rough - especially in the Down syndrom and Heart kid community.  In the last 5 days, we have lost two friends:

First, there is Carly.  She was 8 years old and died last Friday.  This was totally unexpected and it has sent shock waves through the DS community.  So many of us have never met IRL (in real life), but are still close through our blogging and facebook communities.  If you would, please say a little prayer for Carly's Mom, Dad (who had to do CPR until the ambulance arrived), and her older brother and sister.  If you are so inclined, please stop by Michelle's blog.  She has put up a button to donate.  On behalf of the DS community, a fund has been established to pay for a wonderful artist named  Michael Johnson, who also has DS, to commission a painting of Carly for her family.  Any money over and above will be donated to Mott's Children's Heart Center per Carly's family's wishes in her obituary.

Our next friend is a local heart buddy.  I have asked for prayers for Ashton before.  Sometime on Sunday night or Monday morning, Ashton had a major stroke.  He was still on a bypass machine, but was being weaned.  He was going to be listed for transplant.  Sadly, his family had to take him off of life support on Monday afternoon.  He had such a following!  I was never able to personally meet Ashton, but I have talked with his Grandmother and Dad.  They are both wonderful people.  Ashton was a first degree black belt in TaeKwonDo, and attended the same studio as my nephew.  He will surely be missed, but we are happy that he is now able to run, and spar, and do all of the things little boys should.  A memorial is set for this Saturday, May 1 at Bismark school.

The next person is my friend, Phred from Alaska.  We have known each other for years via the internet, but never got to meet.  Phred was crazy as a bedbug!  If you look up Mountain Man or Hillbilly in the dictionary , it is a sure bet the picture would be Phred.  We may not have always seen eye to eye on things, but he was one of those rare birds who knew who he was.  He had no trouble expressing his oppinions - wanted or conventional, or not - but he had no trouble with others doing the same, whether you agreed with him or not.  Many of those ideas where greatly challenged this past fall when he became a Grandfather.  His Grandson was born with both Trisomy 18 and Trisomy 14, plus a translocation.  This was a defect that the doctors never thought the baby would survive - even through the pregnancy.  So far, he is doing amazingly well!  It looks like he is the only recorded person in the U.S. with this particular genetic disorder.  On March 25, Phred went to sleep and never fully woke up.  He had a massive stroke.  His family took him home from the hospital to make him comfortable and he passed away on March 29, 2010.  We noticed that he had been missing from our forum and somebody contacted his wife.  She forgot to notify his on-line friends.  We will miss you Phred!

So now that we are all thouroughly depressed, the results from all of our recent appointments....

Monday, the 19th, we went to the Cardiologist in Peoria.  Christopher* had an ECHO.  The results were GREAT!  Tricuspid regurgitation (or leakage) was minimal. Mitral valve regurge was downgraded from moderate/severe to mild/moderate.  No sign of pulmonary hypertension returning, and mild thickening of the septum that was repaired. (His septum is competely patch material - now is growing scar tissue and thickening making it less flexible. For obvious reasons, this is watched VERY carefully).  We don't have to return for a year!

Tuesday, the 20th, we went to Wheelchair Clinic at LaRabida in Chicago.  We are required to go every 6 months, or it voids the warrenty on the wheelchair.  Unfortunately, we don't use his wheelchair that often.  He does not sit in it all day, he is not transported in it to school or anywhere else, and it is HEAVY!  It takes two of us to lift it into the back of our van.  Since my Dad has had colon cancer surgery and hernia surgeries, he can't  isn't supposed to lift over 10 lbs. So, Christopher will have this chair for a L-O-N-G time. They had to order a new back for the chair (I think everything is custom made) since he just keeps getting longer instead of gaining weight.  We drove to Chicago, went to clinic, and was back home by 12:30 that day! Remember, this hospital is a good 3 hours away, depending on traffic.  We didn't mess around that day.  Something fired us up because we ended up going to get curtains for 4 rooms in the new house, paint for 5 rooms, rugs for 2 rooms, completely changing the plan for one room in the process, and stopping by a couple furniture stores to look for a few things we need!  While at Menards, (after Mommy used Cavi-Wipes to sanitize them) we put Chistopher in a swing that is set up there.  We have the same one for him at home, but aren't putting up the set this year because as sure as we do, the house will sell!  He really seemed to like it.  Here are a few pics.

Friday, the 23rd, we went BACK to Peoria to see the GI doc and the Endocrinologist.  Even though the scales indicated that Christopher had lost a pound since his visit to the Cardiologist that Monday, the GI doctor was happy with his overall weight gain of 1 1/2 lbs since October.  He added some calorie booster to the formula cocktail and a return visit for 6 months.  The Endo doc was underwhelming.  I am not sure I am too comfortable with her.  I had some questions that I asked her several times and she ended up never answering one of them.  Christopher's TSH levels supposedly went up 3 points in 3 weeks, and she sisn't wasnt to repeat the test to make sure what was going on.  We have such trouble with Peds. Endo. docs.  They just don't seem to want to do much unless your child has diabetes - not something we want to visit thank you.

Well this post in long enough.  I will update our trip BACK to Chicago yesterday for tag team therapy services and a trip to the zoo - complete with picutes!

Hugs!

Steph

*OK. So I originally was only going to use "Lil' Man" on the blog as a pseudo security measure.  It is too much work and most of you who come here already know who Christopher is anyway!  LOL! So, I am going back to using his real name.  :)

Busy Week!

Well, we have a busy, busy week this week.  Monday to Peoria for Cardiology appointment, Tuesday to Chicago for Wheelchair Clinic, Wednesday to the dentist for me, and Friday back to Peoria for GI and Endocrinology appointments!  Whew!

I will update when I can.  Have a great week!

Hugs!

Steph

Things are a changin'....

Hello all!  Just wanted to drop a line to say that I am going to be working on the blog.  If you can't see something, I am probably busy editing!

Notice the new page additions at the top.  I will be adding to these regularly.  I have probably thousands (no joking) of links regarding homeschooling alone!  Don't be fooled by the titles.  There will probably be something on each page for everyone when I am finished (if ever.....LOL!). 

For all of my blog friends, I am having trouble with my comments on others' blogs - only blogspot blogs.  I will write a comment and the entire thing disappears!  Please know that I am visitng your blogs, even if my comments do not co-operate.

Not much to report right now.  Busy week next week with appointments: Monday - Cardiology, Tues - Wheelchair clinic, Fri - GI  & Endocrinology.  Not too bad unless you consider each of those is 200 miles away.  Our van is going to be our best friend!

Have a great weekend!

Hugs!

Steph

Prayers & Purging

First, I would like our blog friends to say a prayer for one of our special buddies.  You can go Here to follow them.  We have been trying to make time to meet IRL, as they live a few hours north of us.  Erin posted that Malachi was admitted to the hospital last night with RSV and a major stroke that is affecting one side of his little body.  Please pray that they can figure out what is going on and get him on the road to recovery quickly.  His brother, Elijah JUST came home from the hospital from his open heart surgery.  If you are reading this Erin, we are keeping you Josh, Malachi, and Elijah in our prayers!  Hugs!

Outside of that, we have not had much going on around here worth bloggin about!  :)  Big Chris & I are busy attacking our house - purging, packing, & getting ready to move.  We have WAY too much stuff!!!!  What isn't good enough to go in to the rummage box is going out on the curb.  You would be AMAZED at the crap people will pick up.  Even so, I am sure the garbage men hate me right now. 

This week we go to the ortho doc on Thursday.  We will see what he has to say about those kneecaps.  I do hope we can get away with NOT doing surgery to put them back in place.  :(

Next week is VERY busy.  We go to the Cardiologist in Peoria for our, now yearly, appointment.  Going to push for some blood work, as Lil Man has just been "off" lately.  I hope it is just allergies.  Then Friday, we go back to Peoria again for appointments with both G.I and Endocrinology.

Hope everybody out there is doing well!

Hugs!

Steph~

It Begins....

We have to travel to Chicago tomorrow for Lil Man to start therapy, so of course there has to be a Winter Weather Advisory out! Ha!Ha!  We wouldn't have it any other way.  Really, the snow doesn't bother me so much.  It is the wind.

This will be the first session of tag team therapy.  We will see what they come up with for our assignments for the month.  We are scheduled to go up every 4 to 6 weeks, have PT, OT, and Speech therapy and get "assignments" to work on until the next appointment.  He has changed some since the eval at the beginning of November, so I expect they will be getting to know him again tomorrow.  We all have a general idea of where we are going and what we want.

Since I don't have much to say about anything going on around here, I thought I would put in some info that I have been collecting from various sources including our newletters from the Heart of Illinois Down Syndrom Association (HOISDA) and Down Syndrome Network of Champaign County.

The Current State of Health Care For People With Disabilities:

The National Council on Disability (NCD) recently issued a report calling for immediate health care reform for people with disabilites.  The report includes a roadmap for eliminating the pervasive barriers to health care for people with disabilites.  The complete repot can be downloaded in PDF at:

http://www.ncd.gov/newsroom/publications/2009/pdf/HealthCare.pdf

What Can You Do?

This is the centerpiece of the Campaign for Disability Employment, which seeks to promote positive employment outcomes for people with disabilites.  Go to: http://www.whatyoucandocampaign.org/ 

Case for Incusion:

The United Cerebral Palsy (UCP) has resleased its annual Case for Inclusion that benchmarks states' actual performance in improving lives for individuals with intellectual and developmental disabilites.  Among the findings, there remain 169 large institutions (more than 16 beds) housing 36,175 Americans.  For more information go to:

http://www.nextsteps.peatc.org/newsmanager/news_article.cgi?news_id=17&no_stats_record=1


Just in time for the annual R-word campaign, Campaign to Change attitudes About Disabilites:

http://www.creaturecomforts.org/

Scoop Group Online Resource:

Disability Scoop offers and online discussion group where parents, self-advocates, and friends of people with disabilites can ask for advice, advocate for their causes and share ideas.  http://www.disabilityscoop.com/forum/  

They also have a video which explains the IEP process:  http://www.disabilityscoop.com/2009/16/video-iep-english/3672 

I have more that I will list later.  Have a great day!

Hugs!

Steph

I'm a Slacker - We Need Your Help!

First, I want to apologise again for my lack in posts. We have had the crud since before Halloween and I am JUST now feeling like I am not drowning. I still have a cough and zero energy, but that is 200% better than what I was 2 weeks ago. :)

Lil Man has been doing sooooooo well. I am afraid to post about it for fear I would jinx it! I don't know what happened with that seizure back in October, but it seemed to "reset" something in his brain. He has been doing so well with his school work, his attention span, even sitting! Last night, about 2 a.m., he signed "school" to me - he wanted school work!!! (Well, it didn't reset his internal clock - we are still working on that.)

We go to Chicago tomorrow to see the ortho. Hopefully he can figure out a non-surgical way to get Lil Man's kneecaps back where they belong. He used to be able to dislocate them at will - they would pop back and forth. He seemed to PREFER them dislocated - ah the joys of hypotonia. Now, the ligaments in his legs have started to tighten up. The kneecaps are permanently dislocated to the sides of his legs (outsides). We can't get them to go back and now Lil Man can't straighten his legs all the way. We shall see what the solution is for this.

Here is the part where we need your help:

OK - ATTENTION ALL BLOGGER FAMILY - WE NEED YOUR HELP! Please follow the link below and vote for Christopher. We are entered in a Christmas cash giveaway from an organization that we are sooooo thankful to be a part of. They assign members to pray for your family and child when they are sick. Some even come to the hospital to help out with things like meals and such. They are doing a giveaway and the awards are by vote. You can only vote once per e-mail address - they don't sell your information. Just click on "Christmas Cash Giveaway", enter your info, and click on "Christopher Moore" in the drop down box. Thanks so much for your help. The only really sad part is how MANY sick children there are to vote for. :(

http://www.colesfoundation.org/

Thanks so much for your help - More posts coming soon - I promise!

Big Hugs!

Steph

Heading Out

Lil'Man has appointments both Monday and Tuesday in Chicago. We are going to stay overnight, but we are driving outside the city to Monet (sp?), IL to stay at the hotel. His appointment on Monday is early (yeah!) @ 9 a.m. He sees Dr. Suskind, the ENT. We just love her but the appointments take soooo long. Hopefully, it will not take too long since it is so early in the day.

I expect she will have to clean his ears out and pull out the one tube that we know is in the ear canal. Then he will have hearing tests, and then go back in to see her again. I am going to talk to her about Speech Therapy, since we are doing the others up there, and getting a communication device. We HOPE it will be covered by insurance, but that is always a toss-up. We like the Go-Talk 20 to start out with. If this is a device that is only covered once every 5 or 6 years, we will probably have to go with something that can expand more - something like this which is more computer type. There are hundreds out there - each more confusing than the next. We pretty much expect that she will want to put in a new set of tubes. He also scratched his nose and now has some sort of infection going on. We will be asking what to do about that.

I feel like I have to address something here. I have already had a few comment from people when talking about this. We are NOT giving up on Lil' Man talking. However, the longer he doesn't, the harder it is going to be to get him to speak for it to be intelligible. We are still working on sign language. We have to remember that he has had significant brain damage, just at the part of your brain that deals with speech. He may be having raging conversations in his head, but not be able to get anything out. If those connections aren't there, it doesn't matter whether it is sign language or spoken word - he may not progress. The one thing with the communication device, especially this one, is that is is simple enough not to overwhelm him AND since he loves all toys with buttons, we think he would like this too. We HOPE that it will get him over that gap where he can recognize an object/action and push a button and actually GET WHAT HE WANTS! Can you imagine how empowering that will be? I would LOVE to know what is going on in that little brain of his, but until we figure a way to allow him to communicate fully with us it is never going to happen. Ok, now back to the original train of thought. LOL!

Depending on what time we get out of this appointment, we plan on going to either the Lincoln Park Zoo or the Chicago History Museum. It will depend on the weather, and how Lil' Man is feeling. I know Sr. REALLY wants to go to the History Museum. He is into the World's Fair and just the general history of Chicago. They also have an Abe Lincoln display that is only there until mid-August. Mondays are free at the Chicago History Museum and Lincoln Park Zoo is always free. We like free!!!!! :)

Tuesday is the appointment at LaRabida with the Dr. Thornton. She is the Medical Director for Peds and Adolescent Rehab, Rehabilitation for Kids Rehab. We are not sure what they are going to do - if it will be a full-blown PT/OT assessment, or just get the ball rolling. I am excited about this.We really NEED to get some things going on this front. Not looking forward to the drive, but if that is what it takes....... This doctor also works closely with the Orthopedist that Lil' Man sees. I hope that this eliminates a few appointments. Maybe they can tag-team over at LaRabida.

We can also schedule his wheelchair to be re-fitted and adjusted. I hate not using it - it was soooo expensive, but that thing is just so dog gone HEAVY! It takes two of us to lift it in and out of the van. If Dad is with me, he can't lift - so..... I will also talk to them about getting a script for those fold-up ramps to put the chair in the van. The worst they can do is say, "No" right?

Please e-mail me if you are having trouble viewing anything on our site. There has been some trouble with Blogger, and we are trying to get it resolved.

Have a great weekend!

Steph