Massimo is three & free!

Massimo is three & free!
Massimo turned 3 and is finally cast free! Massi is treated by Dr. Kim Hammerberg at Shriners Hospital for Children-Chicago

I always grew up wanting a little girl. After having 2 boys, I figured that I was just not destined to have a girl.  My husband and I decided to try one last time…..on May 22, 2009 our sweet boy Massimo was born.  I knew this little baby would be special!  Massimo had medical situations from the beginning.  When his circumcision was healing, he formed skin adhesions.  Our pediatrician said he couldn’t fix it so we would need to see an urologist.  So at 3 months he had to have his 1st surgery to fix the circumcision.  At 4 months I
noticed a bump on his skull near his forehead that was hard and didn’t lessen in size.   After an x-ray, our pediatrician told us to see a neuro surgeon.  Massi had a dermoid cyst and needed to have it removed.  Massimo had his 2nd surgery and recovered well.  Fall of 2009, Massimo came down with bronchiolitis.  Our regular pediatrician was not available but the nurse practitioner was.  I brought him in to see her.   As she was examining his chest for his breathing, she turned him around and asked me if I had noticed his spine?  I said no, why?  She said because it looked crooked. I asked her what that meant?   She said he might
have scoliosis.  She said she usually doesn’t see it in kids until they are at least 2.   She sent me to Children’s Memorial because his blood oxygen levels were so low and said to ask them to take an x-ray of his back.  I cried all the way to the hospital.   Growing up, I remember a kid in my class who had to wear this metal brace and I felt so bad for him. I imagined my baby in that metal brace.  They took the x-ray and sure enough it was infantile scoliosis.  They did not tell us what degree the curve measured.  Our pediatrician suggested an orthopedic doctor for us to see and go from there.

Massimo saw the doctor  in December.  He confirmed Massi had scoliosis AND torticollis.   He suggested PT for the torticollis and told us to come back in March.  The PT did wonders to fix the torticollis.  Our PT
suggested we ask our Ortho to do an x-ray at the March visit.  At the March visit we were denied the x-ray
and told Massimo would get one when he turned one in May.  May approached and we FINALLY got an X-ray and it showed a curve at 40*!!   The dr. showed me the x-ray and I just cried. He said with this kind of curve we need to think of treatment like bracing or surgery.   He said come back in 6 months and we will see
what his curve is then!!!!  What?   I didn’t know was that bracing would only hold the curve but NOT correct it.  I was overwhelmed, saddened and determined to find something better for Massimo. I typed in infantile scoliosis the CAST website came up and I started reading all these stories about kids getting casted and the success stories.  They also talked about Shriner’s Hospital which we literally live 15 minutes from in Chicago.  I sent in the application and got a call to set up an appointment.  I didn’t know what to expect.   They did an
xray and said he was at 42* and was a good candidate for casting.  I was all for it although my husband was a
little reluctant.  I told him Dr. Sturm’s credentials and that I just felt this was right for Massimo.   On August 9, 2010 at 14 1/2 months old, Massimo got his 1st cast.  The nursing staff at Shriner’s is top notch!  If I could have brought Gwen home with me I would have.  She really explained things to us and what to expect. Catie who is part of the Lucky Cast Club group reached out to me right away.  It felt so reassuring to know another mom was going through the same thing and understood how I was feeling.  When we 1st brought Massimo home, he couldn’t stand or walk, I was completely freaked out!  I think it was due to the anesthesia because
by the end of the day he was walking and trying to hit a puck with his mini hockey stick!  Yes, it was a hard
adjustment but we handled it!  It was harder for us to see Massimo in the cast than it was for him to be in it.  We survived the summer and no pool action for Massimo. In September we brought Massimo in for a follow up visit.  At this point I had not known what they had manipulated his spine to when they 1st casted him in August.  Dr. Sturm came in and said he looked good and they were able to get his spine to 3* in the cast!!!!   Tears welled up in my eyes!!! Could that actually be possible?   We were told these were great numbers for a 1st cast!   The last week of September I got the call to bring in Massi to get his cast removed.   I was so excited!! We brought him in Oct 4 and he got the cast off!  We were thrilled!  So far this week we have had people making “reservations” to come over and hug Massimo!  We know on Monday we will have to bring him back to Shriner’s to have Dr. Sturm apply cast #2 and find out what his curve is at out of cast. We know in our hearts that the casting is the best option for Massimo. I could NOT have gotten through this up to this point without the support of my husband, family, friends, and the Lucky Cast Club.

Update 2/14/2011… Massimo’s curve improved by 11 degrees in cast #1. He had cast #2 taken off in Dec. 2010, and he was supposed to be recasted in Dec. and then he had a rash and a cough. We rescheduled for Jan. and he still had the cough!  I was getting so nervous about him being out of cast for so long. We are
scheduled for Massimo to be recasted in cast #3 on  Feb. 21. We will then find out how much of an improvement his curve had with cast #2. I have loved having this extended time to hug and give him extra
baths! I am nervous about Massimo getting recasted and feeling frustrated with the cast back on. He is 20 months old now and has taken to climbing on everything!!! I wonder if the cast will slow him down just a little…probably not.  I am so happy about the Lucky Cast Club and what we are doing for other families. The PJ drive was a huge success and now we are having the DVD/DVD player drive. As I reach out to my family and friends for donations, I am educating more people about Infantile Scoliosis and using casting as a form of treatment.  I know with the help and support of my casting friends, we can get through the casting process with how difficult it can be from cast #1 to cast #7.

Update: May 28, 2012.

It has been awhile since I have updated Massi’s story! As I read my last update I noticed I wrote something about how difficult it can be from cast #1 to cast #7. Ironically enough,   Massi’s last cast was #7!!! In April of 2012 Massi was taken out of his last cast and into a brace!  He is currently straight.   He went from 42* in June 2010 to straight in 2012! He is so much happier in his brace.  He has to wear it 23 hours a day and doesn’t complain.  We went to see Dr. Hammerberg in the middle of May and he did an xray. He looked at it and said it doesn’t get any straighter than that!  The brace is currently only all the work his 7 casts did to straighten his spine and set Scoliosis straight!!   I still worry about the brace and if over time, will it hold his spine straight or will we have some regression?   I try to stay positive because that is what we did during  casting…. Stay positive!

Although massi is in brace, our casting friends and families are still in our hearts!   Scoliosis brought us together and it will also keep us together forever!   Yesterday at church, Massi scooted up to the pew in front of us and put his hands together.   I asked him what he was doing.   He told me he was praying!   I asked him who he was praying for?   Massi said  he was praying for his casting friends!!   The bond is instilled in his
heart!

I cherish my friendships with my casting families and pray for their children as if they were my own.  We will all be there for each other whether it be casting, bracing or even surgery.  Beware Scoliosis… We are a tough group filled with a lot of prayer and evenmore love!

Massi’s Story was written by his fabulous mom Tracy!  Tracy and her husband Joe have been amazing support for the Lucky Cast Club since creation!

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