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.  :)

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~

Happy Heart Day Lil Man!!!!

UPDATE: Asking for urgent prayers for a local heart buddy.  He had some trouble the other day and had open heart surgery tonight.  He is currently on ECHMO and will be for at least 5 days.  Lil Man's surgeon worked on him.  Keeping  Ashton and the Norwell family in our prayers; also all of our cardiac friends at St. Francis.  Get well soon Bud!

It is unbelievable that six years ago today, Lil Man had his first open heart surgery!  Little did we know the roller coaster ride yet to come. 

It was origianlly scheduled to happen about a week earlier.  We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks.  My Mom and Dad were with us.  Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave.  While that was a pain, it wasn't the biggest issue.  Before I knew it, I blurted out, "He will be dead in 3 weeks.  We don't have time to wait."

Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile.  Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc.  I really wasn't that interested.  :)  If you know us, you know that is a weekly conversation.  LOL!  He FINALLY came back in and said they could get us in in 4 days.  That was better than nothing....

At this point, Lil Man was just barely 3 months old.  He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day.  Due to the nature of his heart defect, we couldn't put O2 on him.  If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him.  We had to get his sats up everytime he dropped them WITHOUT O2.  Plus, his seizures were not controlled.  He was not having the thousands that we started with, but he was still having hundreds a day.  The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.

His heart defect was classified as a complete AV Canal Defect and a huge PDA.  What we didn't realize was the extent of the defect.  Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc.  This is still how I describe things to those who have no cardiac experience.  The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome.  It was a miracle he lived that long.  They had to build a septum in the heart, making the chambers and valves.  He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three. 

Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed.  He had neither.  The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be.  They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically.  That ridge is a guide that the heart surgeons use to build or repair without  hitting the electrical system.  They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life.  We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.

The last part of the defect was the PDA.  All babies have a PDA.  This is a small connection between the pulmonary artery and the aorta.  The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen.  This is done through the mother's lungs and passed to the baby through the umbilical cord.  Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own.  For some babies it doesn't close.  It can be closed with meds, by a cath procedure, or an open heart procedure.  Most of the time, it is just a matter of snipping the connection.  For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge.  So both had to be reconstructed as well.

We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff.  On our tour through the PICU, we met Barb, Jeff, and little Joshua.  Josh was a few days old and had his surgery the day before.  He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man.  It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap.  You could see his lungs expanding and his little heart beating away!    We had no idea how close we would become to this family...

The next morning - too freaking early - we headed back to the hospital.  While in the surgery waiting room, there was a beautiful little girl running around.  She was everywhere at once.  Her parents noticed us and came over to make over Lil Man.  It was then I noticed that the little girl, Princess Tiffany, had Down syndrome.  She was there for ear tubes.  She had AV Canal repair at 4 months.  Her Mom and Dad kept reassuring us that although it would be hard, things would be OK. 

Big Chris and I were the only ones allowed back into Pre-Op.  Gamma and Papa had to say their goodbyes at the door.  After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over.  They don't let parents go to the operating room.  He was soooo aware of things that morning, which was unusual.  We would not see him that aware of anything for at least the next 6 months, or more.  We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors.  We prepared for the worst, but prayed for the best.

Then we waited, and waited, and waited.  We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too.  It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.

The surgeon came to talk to us about this time.  They ushered us to a conference room and it was actually several docs that came in.  The first thing out of the surgeon's mouth, with a sheepish look was, "You were right.  He had maybe one or two days left."  They proceded to tell us how they repaired everything and what to expect.  Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment.  They were having trouble keeping his O2 levels up.  There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric.  (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs.  This allows it to go in to parts of the lungs where O2 couldn't squeeze through.  What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse. 

We FINALLY got to see him 14 hours after we handed him over.  The entire room was filled with I.V's an the vent, etc.  It was all very scary at first, but you got used to the equipment pretty quick.  As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds.  We would get to know ALL of these folks well.

This started our 6 month hospital stay.  We learned many lessons, met wonderful people, and made lifelong friends along the way.  We are so proud of how far you have come Lil Man!  We can't wait to see what comes next.

BTW - I will try to add pictures later - our scanner is acting up.  :(

Hugs!

Steph

Chicago trip - Part I

WOW! What a week. We feel like we were gone two weeks instead of two days. We did a lot in those two days.

Monday, his appointment with Dr. Suskind, ENT, was at nine in the morning. This meant that we had to leave home by 5. You never know what you are going to run in to with Chicago traffic. That also meant that Mommy didn't get any sleep, and Daddy got very little. We made the trip in 2 hours, and were almost 2 hours early for his appointment. THAT never happens. :)

We first saw the Resident, who cleaned out Lil Man's ears. Other than being full of hard wax, they looked pretty good. His one tube is still in the ear drum, so they didn't pull it out. The other came out the last time. He did NOT like getting his ears cleaned out. They put him in a papoose, which he does actually like. But mean Mommy had to hold his head still so they could clean him out. Not good.

Then he had his hearing tests. He passed easily in the ear with the tube and missed passing by 1% in the ear without. This is a HUGE improvement, though, almost double from last time. We are very happy. Dr. Suskind said that she has no doubts that he is actually hearing fine in the one ear. She said it is the one with the crooked ear canal, and the are very tiny. It is just hard to get a good reading more than anything. Daddy took him into the sound proof booth for the other test. He was more interested in flirting with the girl that was in there with them than responding to the test the way he should. He was trying to reach out and touch her hair. LOL! She had really long, black, shiny hair. Here is a picture of Lil Man getting the first hearing test done. He was enthralled with Barney.

We then talked to Dr. Suskind again. She wants to see him back in 6 months to check that tube, and decide then if we are going to put another set in. She also referred us to her speech therapist, Dana SusMAN. W have met with her before and really liked her, but it has been at least 2 years, maybe 3. Dr. Suskind looked at the stuff going on in Lil Man's nose - it has a HUGE scab every morning that completely blocks his airway there. She said that he has cellulitis and that we need to watch it very carefully. I just hope that it doesn't a. spread, or b. leave a huge scar. Luckily, the fix was bactroban cream. I think we own stock in this stuff. We use it for his G-tube site when it gets icky, so we didn't have to buy anything new.

After this, we headed south again to our hotel. We stayed at the Holiday Inn Express in Monee, IL. I TOTALLY recommend it if you have to stay up north. The rooms were soooooooo clean! They let us check in early and we lugged all of our stuff up to our room. We got everything set up so we didn't have too much to do when we got back that evening. The room had a King size bed, a fridge, microwave, coffee pot, couch. Really nice. Wireless Internet and breakfast was provided. We didn't end up using either. LOL!

Then we headed back into Chicago. FYI, for those who decide they want to visit Lincoln Park Zoo or any of the attractions close to there - DO NOT follow Mapquest/Google directions. Head on over to Lake Shore Drive and go in from that way. We spent almost 2 hours in traffic on the Stevenson to go to a couple of blocks over from where we just came from!!!! That really put a time crunch on our day. Up to then we were running early or right on time on our agenda.

After we circled the block a few times to figure out where the parking lot was, we hit the Chicago History Museum first. This isn't a huge museum, and there aren't a LOT of exhibits. The ones they have are done really well. They are all very interesting. Very kid friendly, but not a lot of the interactive stuff throughout the museum. There is a separate exhibit for kids to experience Chicago with their 5 senses. This is where we got the picture of Sr riding the big, old bike. I was really interested in seeing the Abraham Lincoln exhibits that were touted. They weren't bad, but they weren't THAT impressive either. If you are looking for Abe Lincoln stuff - go to Springfield. Sr is into the World's Fair in 18??. There was a good amount of interesting stuff on this and the Chicago Fire. We were able to get through the entire museum and the gift shop in about 2 hours. It really wasn't that busy, although a group of kids came in just as we were leaving. All in all not bad - for free. Mondays are frre and you can go to the website to see other days that they have for free. Here is a little slidshow of some of the interesting things in the museum. The diorama's of Chicago are really neat!

Make an on-line slide show at www.OneTrueMedia.com

We walked back down to the Zoo after the museum. It was about a mile - mile and a half walk. It wasn't too bad, but it was humid out. It could have been A LOT worse, so we weren't complaining too much. And there was a breeze coming in off of the lake, so that was nice.
Lincoln Park Zoo is so worth it! It is free and open 365 days a year. The prices in the gift shops and for drinks and such were not really much more than we are paying downstate. If you go, make sure you plan for the whole day. Bring a lunch and have a picnic or have lunch at one of the the shops. Everything was CLEAN, and landscaped. You weren't going uphill in every direction like St. Louis zoo. There are several shows per day and a chance to pet some of the more exotic animals, but we missed that by the time we got there. Most of the animals were going in as it was close to closing, and I suspect, feeding time. We plan to go back sometime. Even if for just a few hours. Lil Man enjoyed just being outside and watching other kids play. He did see the lions and heard them roar - loudly! He was also able to kind-of see the penguins. He knew what was in there. The windows were steamed up a bit.

Photo and video editing at www.OneTrueMedia.com

We left at closing time. We ended up getting lost in downtown Chicago. We got the $3 tour and ended up driving down Michigan Avenue, "The Magnificent Mile." Of course Sr is in the back shouting look at that , look over here ....etc. I am trying to dodge taxis and people who actually KNOW what they are doing. LOL! We ended up in the back of Water Tower place. I finally figured out how to get to the highway. We could see it, we just couldn't get there. By this time it was about 7 and we stopped for dinner at Fudruckers. Lil Man really enjoyed that. There were only about 3 other people in there and they had the music going. He was "dancing" for us.

We got back to the hotel about 8 - 8:30. Got Lil Man into the room and were settling in. Our battery had ran down on the camera at the zoo and I was trying to figure out how to make sure it was charged for the next day. I picked Lil Man up and we had a replay of the blowout when Papa and I took him to see the neurologist! Same darn overalls! I am going to quit putting him in those.....What a mess. After we got him cleaned up and recovered - we all fell asleep before 10:00!!!! That NEVER happens. We slept - hard - until the alarm went off the next morning too.

Stay tuned for Part II......

****Please let me know if you are able to see the slide shows. I can see them on the other site where I make them, but cannot see them once I put them on the blog. This is a problem with my computer or browser - something. I have trouble seeing pictures posted on other's blogs too. However, I can't tell if things are working correctly. I would appreciate it you could leave a comment if you can't see the shows. Actually, feel free to leave a comment anyway. LOL!******

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