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.  :)

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?

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Have a great weekend!

Steph