Dear Son's Birthday Party at School

On Friday, Dear Son turned 19. As you know, Dear Son graduated high school last year and now attends classes at a Transition Center. This facility is run by the school district and special needs students can attend this program through the age of 21. This is a picture of Dear Son and his male classmates on his birthday. I love this picture of the kids. They all look so happy. I especially love the smile on Dear Son's face. He really loves a party and loves people.

When he arrived home on Friday, in his backpack was a large envelope full of birthday cards from his classmates.

There were several themes.

The Sports Theme

Country Music
Arts & Crafts Theme

It was obvious, some of them took a long time to make.

Then there were the well wishes. Some cards had simple messages.

Some cards were tricky...here's a Chicago Bulls Photo on the front...

And a Chicago Bears message on the back of the card.


Some messages were sweet...

Some were very thoughtful...



And some probably weren't meant for Mom to see...

Regardless, Toby Keith says...

After the party at school (Dear Son goes half days), the afternoon bus driver serenaded him by singing, "Happy Birthday". Dear Son was all smiles. When the bus driver dropped him off, he asked if Dear Son was 20 or 21. I said, "19". The bus driver joked that if he was 21, he was going to buy him drinks at the "Tilted Kilt". I laughed and said that Dear Son doesn't drink however I am sure he would love the eye candy at the Tilted Kilt.

As we walked up the drive, the florist drove up and delivered some flowers to me. The note said the flowers were for me (not related to Dear Son's birthday) but the balloon was for Dear Son. I told Dear Son the balloon was for his birthday and asked if he wanted to hold it. He held that balloon all weekend and loved it.

We celebrated some more at home. All in all a great 19th birthday. It was wonderful to see him so happy.

Happy 19th Birthday Dear Son~What a Difference a Year Makes!

One year ago I was in despair. Dear Son was unconscious on a ventilator and what was supposed to be his best birthday ever, was his worst. In May of last year, Dear Son had his vagus nerve stimulator replaced and his lung collapsed. It was a bad hospitalization and I vowed that if he made it through, I would contact the Make a Wish Organization and plan a trip. I wanted him to be able to look forward to something else and to pack for something else, other than to go to the hospital. I just wanted to see him happy.

The wish was approved quickly and I met with the organization. I decided that I’d plan the trip around his 18th birthday. How exciting that would be for Dear Son. Extensive planning went into the trip and we made sure to get his swine flu, flu and pneumonia vaccines in order to take our trip. When we arrived at the hospital, the swine flu vaccine was non-existant. They had run out despite the fact that we scheduled the appointment some 25 days prior. Five days later, Dear Son came down with a slight fever and within 24 hours he had sepsis and within 48 hours he was on a ventilator. The Make a Wish trip was dashed.

Last year, a few days prior to his 18th birthday.

It was a devastating time. He got the swine flu and a viral pneumonia and was on the ventilator. His body was filling up with fluid. The ICU hospital staff was horrible-there was such hysteria over the swine flu and most didn’t know the procedure. The days were long in the ICU. After a while, you know the drill: vent, vent settings increase, patient improves slightly, vent settings decrease, vent removal, two more weeks recovery and then go home. How could this happen? I felt at that time that Dear Son had been through so much and the trip would be the one thing where he would experience total joy.

Photo of Dear Son four days prior to his 18th birthday.

As he lie on the vent, I thought about his little life. Some sixty plus hospitalizations. No child deserves a life like that. I was so sad, I mean, I try not to feel sorry for myself but why couldn’t my Dear Son have a great life? Why did he have to go through such suffering in his life?

His birthday arrived and I wondered if it would be his last. I desperately wanted him to survive. I thought it was horrible in 2006, when he had the MRSA pneumonia and almost died on Mother’s Day (he had a transfusion that saved his life). I thought that would be the worst possible outcome. But to die on his birthday, would be, devastating.

He was taken off the ventilator on Friday, the 13th, the day after his birthday. He wasn’t quite ready but they typically don’t like them to be on the vent beyond two weeks. He struggled to breathe. He made it through and came home last Thanksgiving but yet he struggled to breathe for weeks after that, then had pain issues and more hospitalizations for another two months before they located the source of his pain. Needless to say, it was a tough year. In May, he finally got to take his Make a Wish trip and we had a wonderful time. As his birthday approached this year, I was pretty nervous. October was rough. His breathing was terrible at times and I feared he was getting pneumonia. I knew I did not want to see him in the hospital again this year. Each time the hospitalizations get a little bit harder for him and a little bit harder for me. It’s not easy to forget.
So today, we celebrate his 19th birthday. It’s a glorious day. He's wearing his new birthday outfit for school. I baked a cake to send to school with some homemade buttercream frosting. He won’t be able to eat any of it, but he’ll enjoy the celebration. They’ll have a party for him and he’ll love all of the hoopla surrounding his birthday. He’ll smile when they sing, “Happy Birthday”. He’ll laugh when they clap for him and he’ll genuinely love all of the excitement around the day. I told him before he went to bed last night that it was going to be a great day today. He loves when I tell him that.

Life is very, very good today. I am really excited and thrilled that we have a 19th birthday to celebrate. After the darkest hour last year, a normal, happy birthday is about the best thing I could ever have. Never take birthdays for granted. I told Dear Son that when they light the candles on the cake today, to make a wish. I hope that whatever he wishes, come true. I’ve been blessed with a lot of things in my life, but the biggest blessing I have ever had, is spending another birthday with my Dear Son.

Note: Dear Son is nineteen years old and suffers from seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He also has a progressive neurological disease.

Swine Flu Medical Update #5~Happy Birthday Dear Son

This will be quick since I am short on time.

Yesterday, we had some setbacks. When they decreased the PEEP settings on the vent, it was a little hard on Dear Son and they had to increase the oxygen back up to 50%; the setttings remained there all day. At 2:10 a.m. Wednesday morning, Dear Son began having seizures which they treated with Ativan since the VNS did not control them. Around 7:15 a.m, he began having seizures again however his blood pressure went way up to 202/110 and remained there. They gave him 4mg of Ativan total and then had to call Ped Neuro Doc. Labs were taken again, he was given a bolus of a seizure med and late in the day, he increased one of the seizure meds after the labs came back. Dear Son has trouble when he lies on his right side since he has a right lung pneumonia.

The central line has begun leaking however they are watching it and they areo.k. with it.

Chest x-ray looked better yesterday; keep in mind chest x-rays lag behind.

I spoke with the Section Chief of Infectious Diseases yesterday. He's in charge of prescribing the antibiotics for Dear Son and is an expert in fevers and all kinds of infectious diseases. They will discontinue the Tamiflu now and after he's off the vent, discontinue the Vancomycin and Zosyn.

He also had a discussion with me regarding a trach for Dear Son to keep the airways clear. I will not do a trach for Dear Son and will explain my position on that (as it relates to Dear Son) at another time when I have more time. I told him I was very comfortable with my decision and that I had researched it and had many discussions on the topic with several folks some time ago.

In summary, Dear Son remained on the vent. He had to stabalize a bit before they can extubate him and ideally, they'd like to see the PEEPs decrease to 5 or 6 with an oxygen of 40% before they extubate. They may try to switch the vent setting to a C-Pap setting to see if he can handle that. Either way, when they extubate him, he will require Bi-Pap support or additional support.

I can't say that I felt too great about things yesterday however the Attending Doc remains confident that they can get him off of the vent.

I am not feeling very well myself hence all of the running back home. I have an ear infection, sore throat, cough and generally am feeling pretty miserable. I started on some antibiotics yesterday.

Today's Dear Son's 18th birthday. We won't do anything today since he's unconscious. I did tell him we'll have a party when he's well.

Thank you for your continued prayers and support for Dear Son. I did get a few more questions answered regarding the Swine Flu but I'll have to share them another day. I have 15 minutes to get out of the house and back to the hospital. I greatly appreciate all of your comments. I am sorry I can't respond to any of them. Thank you for your e-mails as well.