Children's Memorial Hospital in Chicago (CMH)

I thought I add one post about the Hospital here in Chicago.

Most of you know that both boys had Tethered Spinal Cord Surgeries done at the Children's Hospital in Dallas. Alexander in December 2005, and Connor in August 2006. Our experience there was wonderful in regards to the hospital, the treatment and the personal... Doctors to Nurses. EXCELLENT.

Well, Chicago CMH is just as great and the people here are wonderful and just plain amazing with children. Super patient, and most importantly very compassionate. They don't just talk to us as the parent but always address the child and talk to them, listen and make them feel heard.

The only difference to the Children's Hospital in Dallas is the building. It is very old and not every room is private. There are kids on our floor (a lot of babies) who are in isolation so need a room for themselves. The good news is that the new hospital is being build and will open in down town Chicago in two years. We figure we will get to see it since Connor's treatment might last for a few years and we will have to come back to ORD every 3 to 4 months.

So to make a long story short. If I can give any advice I would always recommend, if you have a choice, to take your Child to a Children's Hospital.

Hugs,

R A C A

Day 4 at CMH

As I told you all last night Connor decided to go to sleep at 6:30 PM and then woke up for us usual vital check at 8 PM. This left him talking about non stop for 10 minutes and then he crashed again :) He did cough a bit in the beginning but we found out that by keeping his bed at a 10' or 15' degree angle he will stop coughing.

There were no tests at all today and the highlight was seeing the Rainbow therapy dog, Sam, that came to visit the children today. Alexander was able to work with Sam quiet a bit and loved it. Connor did well until the end when he had to go to the bathroom and fell down. He cried and we ended taking him back to the room for more pain meds. We went back to the playroom this afternoon and Alexander played video games again while Connor tried to colored about 10 pictures in a 2 hour time period.

Ron went to Target for some shopping and I will head over to the House soon with Alexander for some Laundry time. We are hoping to find out tomorrow when we can head back home and continue treatments there. One of the reasons for being here is to get the perfect treatment plan that we can implement at a hospital at home. Tomorrow Connor will have some blood work done in the morning as well as Alexander.

More will come later today or tomorrow when we get more news :)

Not much more to report tonight other then Connor asking to go to sleep again at 7 PM. Ron, Alexander and I had some quiet time having dinner (Pizza) at the Parents Lounge and now we are all off to bed.

... there is one up-date... just talked to Ron and even thought Connor asks to go to bed early he does wake up for his 8 PM vital checks and added medicine intake and he does not do well when that happens. Tonight he got very up-set and cried a lot. We are now evaluating that his walking yesterday and then taking him to the play area might have been to much. He probably does not feel as much pain anymore so wants to do things but in the big picture he is still very weak and has hardly any muscle strengh. So will ask the Medical Team tomorrow for some advice....

Hugs,

R A C A

Day 3 at CMH + night time up date

It is 10 AM CT here in Chicago and according to my husband last night went well :) Connor slept good and did not cough to much. He did wake up all soaked however so he got a nice bath and a clean bed and sheets.

We were told there will be just one test done this morning which will be a Cat Scan. He already saw most of his doctors this morning and the good news is that he will not have to be moved to the NICU to support his breathing :) They still would like to schedule a sleep test down the road but for now we have nothing to worry about in that department.

The medication given to him since yesterday make quiet an impact already and I will post some picture's later. We took Connor for a walk around the hospital in his Wheel Chair and at one point Ron took him out and asked him if he wanted to push his own wheel chair. He walked all the way to the big picture window that over looks down town Chicago. This was the most walking we have seen him do in over one month and a half!!!
And of course we also were informed about all the Side Effects that will or may occur from the medicine he is on. One of them is his being very, very hungry. So now his request for lunch is a Fillet of Fish from McDonalds... trust me when I tell you this is something completely new!!!

As to the side effects. We will have to keep Connor on a low sodium and low fat diet to combat the high blood pressure and control the weight gain he will face. The drug will also effect all his organs and one of them will be his brain. So we need to be prepared for some mood altering and according to the Doctor I talked to last night this might go from sad, to depressive, to angry and tantrums to the opposite and complete euphoria. They have seen every spectrum and you never know where he will fall into. The other concern but it is very rare is Diapetes. His eyes will have to be checked twice a year for cataracts.
I am sure I forget something right now... a lot of information....

Alexander and I did great at the Kohl's House last night. We went downstairs so he got to play in the playroom while I caught up on e-mail and the blog.

Up-Date: It is 6:40 PM right now and Connor decided to go to sleep. He told us he was tired and to please turn of the TV. He said his goodbyes to Papa & Alexander and is laying there very quietly. The day was a big adventure for him since he got to go for lunch downstairs in his fancy wheel chair and got to spend a couple of hours at the Children's Play Center. Alexander loves this place so much that he was very upset when he was told they were closing at 5 PM on the weekend. He made some friends and is now mastering the Play Station Star Wars Lego Game, I think he will dream about this tonight :) There also was a fun interactive theater play for the kids this afternoon and both Connor & Alexander laughed out loud several times.

So and the scheduled Cat Scan did not happen today due to Connor not wanting to participate anymore. He has been a trouper thru it all but finally said he had enough. They will now check to see how important the cat scan is and if the doctors want it then it will happen with anesthesia.

When I catch my breath I will work on a way to properly send a 'Thank You' out to everyone that has helped us a long the way.

Hugs,
R A C A

Day 2 at CMH

Last night Connor did a lot of coughing and around 8 PM they included to having his vitals taken every 4 hours to have his oxygen measured as well. Connor went to sleep around 9 PM and around 9:30 PM another blood sample was taken to look at his oxygen levels in addition to the other readings. Connor slept very restlessly and cough continuously. Part of the worry due to his problems swallowing would be him getting pneumonia.

Today we started the day running at 7:30 AM. Connor had an MRI of his Hips and muscles. We made it back in time for more blood-work, Physical Therapy assessment - which won't happen until they can get him pain free.He saw the Respiratory Doctor again, had an Eye exam, and most importantly met with Dr. Pachman who ordered him right away on purred food. He went and had a lung capacity test, we talked to a Nutritionist and he is off now to have a swallow test done. All this and it is just 1:40 PM......

Connor is still taking it all in stride and only complained about the change in food... he does not like eating purred Waffles with Syrup :)

Alexander on the other hand has been Mr. Personality and even fell in love with one of Dr. Pachmans Doctors, who is right now giving Alexander a tour of the hospital which includes lunch.

Also we moved out of the Beldin Stratfort (sp) Hotel and are now moved into the Kohl's House which houses families of Transplant patients. They had room for us and Ron who moved our luggage over said it was beautiful and is just one block from the Hospital.

Dr. Pachman said the reason for all those tests right now is due to the weekend being quit and they want to get Connor started on a treatment. So she things we will have Lot's of down time this weekend and then get back to work of Monday. So not sure how long our stay will be but as always will let you all know when we find out more.

So now I do have another up date because it is 8:30 PM and Alexander and I are at the Kohl's House which seem's heavenly right now. Connor had a couple more tests this afternoon including a n Echo Cardiograph and a visit from the Dentist. He also had his blood pressure and vitals taken every 15 min for one hour.

For my medical friends here is a run down of Connor's medication right now:
1) Calcium Tums 500 mg 2x daily
2) Tylanol with Codeine 120-12mg/5 ml - give 12 mg every 6 hours as needed
3) Calciferol 400 Units 2x daily
4) Folic Acid 1 mg daily
5) Solumedrol 560 mg daily
6) Protonex 19 mg 2 x daily
7) Methotrexate 12 mg once tomorrow (Saturday)

Hope you are all doing well! and Alexander and I are off to bed since we are ready to fall over while my lovely husband is taking over the nights shift with Connor.

Hugs,
R A C A

Day one at CMH is almost over....

So Connor was admitted to the Children's Memorial Hospital (CMH) this morning at 8 AM and has been a very popular person since then. He met several doctors, nurses, girls from Child Life who spoiled both boys with attention and toys. Connor got an x-ray of his chest and blood taken. They will do a lot more blood work tomorrow and it was said they will need a total of 20. Not sure if that means vials or what....
He met with Dr. Allen and Dr. Miller today as well as a speech therapist and Respiratory Specialist. Tomorrow he will meet Dr. Pachman plus a physical therapists as well and he will have an x-ray/video of his throat while he has to eat and drink. We did sign him up for Dr. Pachman Research Program which means they will take two extra vials of blood plus they also took pictures of his fingernails through a zoom to count his blood vessels.

Alexander got a nice break today as they have a wonderful Children Area and the 5th floor. From 2 to 4 PM they have supervised play time for siblings and patients. When we went to pick up Alexander he was having a lot of fun playing and the attention of 4 Volunteers that played with him.... you all know how he soaks up this kind of attention....
Tonight at 7 PM there will be a clown visiting so we will go and see him as well.

Also we will take turns staying with Connor and I will stay tonight while Ron and Alexander go back to the Hotel. Tomorrow we will move to one of the houses close to the Hospital that usually hosts families of kids with organ transplants. Ronald MC Donald's is of course on the top of the boys wish list :)

So once again we want to Thank everyone for their precious e-mails and messages on FB.

More tomorrow,

R A C A

Ready to check into the Children's Memorial Hospital in ORD

Well we had a very short and restless night. Connor was coughing a lot and I tried to keep him elevated as best as possible. Strange to say but we are looking forward to having him admitted today.

On another note once again when it came down to it AA came through for us yesterday. We were cleared to travel A9 all the way from DEN to ORD and back again when we let them know.

More up-dates will come once we find out more.

Hugs,
R A C A

On our way to see Dr. Pachman in Chicago

I am sure we left a lot of you wondering today what was going on...

This will be a little short since we are tired and getting ready for bed. We e-mailed Dr. Pachman last night and got a response within an hour to give her a call this morning. We called at the scheduled time and she said she wanted Connor admitted as soon as possible. We left right away this afternoon from Denver to Chicago and we will be checking into the ER tomorrow morning at 8 AM. Dr. Pachman won't be in tomorrow but her team will look after Connor and she will see him on Friday.
We will keep up dates coming along our journey here in Chicago. The boys keep asking where the wind is :)
Hugs and a good night.
R A C A

Back to School ... At least it feels like it ...

For the last two days I have tried to read up on JDM and get organized as best as I can. I feel like we as a family are heading back to College. So far we have a journal and a three ring binder that documents Connor's beginning stages to now step by step. Plus of course we have this blog. So I am typing or hand writing all day and trying not to get Carpal Tunnel Syndrome :)

I am happy that Ron is home for a couple of days since this always calms us down. There has been no change for Connor, good or bad as of today. He had a hard time in the car today and we had to stop twice to readjust his sitting position and he told us he wanted a soft booster seat... do they even exist?
And to make our drive from Lake George to Colorado Springs and back complete, Alexander got sick and threw up in the car while we were driving on Interstate 25.....

What really is hard to put into words is the fact that up to now it has always been easy making decisions for us as a family, for one self or even when it comes to raising the boys. Now there is no concrete answer to which path to take and what impact our choice can have to Connor's recovery into remission. The Book 'Myositis and You' has been very informative and it really gives us more and more to think about. We are going to call Dr. Smith tomorrow to talk to him about the treatment plan's mentioned. It seems the key to a way into remission is going after this disease fairly aggressive from the get go.

On a bright note I will have some more work to do and set up a whole wall for all the 'Get Well' Cards Connor has gotten over the last few weeks. As to gifts the boys are receiving as well, they seem to think Christmas is a continues Holiday. I told them that from now on when they are practicing their writing skills it will be in the form of writing 'Thank You' cards and that might last for the rest of the school year - haha

Not sure where is up and down....

As I said in my first post there will be days when we will feel we are going backwards and today seems to be one of them.

Connor had a very restless night being awake most of it and crying about pain in his knee's. I am wondering now if he is going backwards or if we just over did it this week.

Yesterday when we drove home from the Birthday Party I stopped at the Post Office and waiting for us was our Welcome Package from CureJM including the Book Myositis and You.
I made the mistake of reading it for bedtime and I can promise you that it did not make for sweet dreams. It seems the more I learn about JDM the scarier it seems. Trust me I am not complaining about the book, you know how I believe information is life.... I know this book is the most informative I have read on this disease but it also does not sugar coat anything. I know if you are not touched by JDM you might not feel like reading this book but they do sell it at amazon.com and if you ever have questions this book will lay it all out for you.

We also got a couple of very sweet and informative e-mails in regards to Connor's treatment which I am so grateful for and which also makes me question our path of treatment right now.
I can not express enough how grateful I am to have found the most caring people at CureJM that have been in contact with us since the day we signed up and then in the most paradox way I so so so wish I would still be ignorant to JDM, had never heard about CureJM and would not know all those sweet and caring people.... sounds horrible but how I wish we were still as ignorant about this disease and that it would never had entered our life and touched us...........

So today my mind is going in circles and I can not wait for Ron to come home.

Hugs,
A

Our Adventure to the movies :) 01-22-2010

Trust me when I tell you I will NOT post everyday!!!

Today however I will post because it was an important day in our little life's. Ron left today for his first trip heading to Vancouver, Canada and it will be strange not having him home after being spoiled for over a month of having him with us. I know I will love the day when he retires! And second we also did our first real outing since Connor got sick about 1 1/2 months ago. He kept asking to go to the movies and I figured there is no way in knowing how it will go unless we give it a try.
I was lucky however that my friend Jennie and her boys humored my short notice txt to come and go see the movie with us. It sure made it easier having an extra hand :)
Overall it went really well. Connor walked around the inside of the theater a bit and I carried him up and down the stairs. He also is quiet a negotiater when he tried to get Popcorn (which was not going to happen due to his difficulty swallowing). He told me it was okay as long as he got either Cotton Candy or Ice Cream since he would have no problem eating that. So ice cream it was for both my dumplings.

Also some good news is that starting tomorrow Connor will get liquid Prednisone so we do not have to crush up pills anymore and he won't get the bitter taste of pills mixed with Apple Sauce.
There also was a fax waiting for us at home from his doctor that said we can apply for a Handicap Card for our car. Never thought we would get the privilege of getting to park in the handicap spots but it sure will make it easier not having to carry him across the parking lots anymore.

Alexander loved playing with Zach and David for the short time before and after the movie and it was fun watching him run and play. Oh, and we did see the Chipmunks movie.... I tried my best to get into Avatar 3D but it did not work out :( JUST KIDDING :)

Follow Up Visit with Dr. Stephen Smith 01-21-2010

Ron and I thought we would start this blog to make it easier to keep those of you that want to hear about Connor's journey with JDM in the loop. Posting on FB has been a wonderful way to keep you up to date until now but as you all know once I start typing I have a hard time stopping :)

Today we went to see Dr. Smith again to talk to him about Connor's problems with swallowing and chewing. He said that this is just another form of his muscles being attacked by this disease but he also said he is not worried at this stage about his breathing. It really is at a point where we need to trust into the Prednisone doing it's job. The muscles are obviously under attack and being destroyed and the prednisone is trying to stop this. Where the part about us being patient comes in is that even when it is stopped it then comes to the point where he has to build new muscle fibers and be stable before we can consider physical therapy which of course takes time.

Here is an idea for you to know where Connor is right now. He can walk but very slow and for very short distances, approx. 15 feet. His feet are still turned out to about a 70 degree angle and he can only stand or walk on tip toes. He can hardly support his neck and when you pick him up you have to support his neck or his head will just fall back. If he tries very hard he might lift a cup up to drink but only once. We are at a stage where he has to be dressed and undressed, and we are feeding him about 80% of the time. Same with drinking, we use straws and pick up the cups for him. As mentioned above he has a hard time swallowing so right now it is all soft or liquid foods. Chewing hurts him so he chokes when he tries to eat something solid because he won't chew it enough. He also can not sit in an 90 degree angle since his back won't bend. He usually lays down supported by several pillows to lift him up a bit.

Now I am not writing this to sound negative. This really is our new temporary 'normal'. If I have to reflect on anything good that came out of this then it is the fact that it showed us how strong and connected we are as a family. We still have laughter in our house and we still find things to do that brings happiness to the boys. Ron and I are in complete agreement that we will not accept that this disease has no cure and we will push, educate ourself and not rest until Connor will get the best treatment and help that he deserves. If this would mean for us to take him to another country then so be it. Right now we are lucky that there is some great research done in Washington D.C.. We have been in communications with Dr. Lisa Rider M.D. thru phone calls and e-mail who leads the Research Program of Twins and JDM. They are very interested in Connor & Alexander and we are looking at a possible trip to D.C. so they can enter the study. She said she would love to have them there are soon as possible but Connor needs to be stable first which might take a few more weeks.

I also want to take a minute and Thank everyone that has shown us unconditional support. It really makes us feel loved and most importantly made us realize that we are not alone in this journey and that Connor sure has the most amazing Angels looking over him.

I think I will love having this blog as an outlet and the truth is there will be no fast cure so there might not be any change for a while or we might be going forwards two steps and back one. The reason phone calls have been so hard for us is having to re-tell over and over the heartbreak we had when this all first happened or as new heartaches arise. Most of you are parents and you know how it physically hurts you when you see your child in pain. The helplessness we had felt during the Christmas Season and leading up to the diagnosis was truly something we do not want to experience again.

Sorry this was so long and I am positive my future posts won't be this lengthy - haha

Truly I am signing off now knowing I am surrounded by hope, family and friends..... Lot's of Love & Hugs to all of you!

R (Ron) A (Anke) C (Connor) A (Alexander.... R A C A :)