Gabriel has officially past the year mark without a seizure! YIPPEE! What a year it is has been! We have learned that stopping the seizures has not stopped the side effects and other issues that Doose causes. However it is a HUGE milestone to be celebrated!

The year date came and went without much fanfare because he was so sick with RSV and then pneumonia. We spent a full week in the hospital. There were some stressful and scary moments, like a sudden 105 fever spike that seemed to come out of nowhere or oxygen levels plumanating when the oxygen mask was removed for an x-ray. However, in general this hospital stay was not bad. Unlike our other visits, the medical teams deal with RSV/pneumonia type things all the time. We knew what was wrong and how it should progress. We weren’t having the follow the ketogenic diet. AND we had TONS of help! Thank you everyone who brought us meals, did our laundry, visited us, sent balloons, etc. etc.  I am not exaggerating when I say we would be lost without you!

We have been home from the hospital for almost 2 weeks. The first week Gabriel did great! He played and played and played some more! He talked non stop and soaked up all the attention. We had  good follow up visits with Occupational Therapists to check on his swallowing and with our family doctor.

The next steps are going to include working with something called an Aerio Digestive Team (I am sure that is spelled wrong) , and a Pulmonlogist to resolve his oxygen levels. The ideal number is 100 and he walks around in the low 90’s and dips into the mid 80’s during sleep (translation-not enough air-not good). At least that is where he was when he was healthy before this last bout of pneumonia and the hospital stay.

After the great EEG results we are getting to wean another one of his medications (Onfi- for the epilepsy families following this)! YIPPEE! The goal is to only have him on the medications that he needs. The less medications, the less side effects, the easier on the brain.

The weans themselves can be tough. We have been very lucky that so far, that we have not seen side effects when weaning medication. This last week was tough though. We don’t know if it was medication wean, or the wean in combination with heading back into the school schedule (after 3 weeks off due to illness and spring break). But he has been needing naps again, he has been very emotional (out of character) and has had dry heaves in the middle of the night. All are possible side effects of weaning but also all things that can be attributed to a full week back at school.

We are hoping our happy playing, chatty boy comes back soon. So many ups and downs. One good thing about our ups and downs is that we have learned to really appreciate the ups! 😉

Thanks for your prayers and support as we continue to fight for our boy 🙂

Gabriel is continuing to improve at the hospital. He is able to be on “room air” as much as possible. He spent most of the day without oxygen yesterday. Today seemed like a small step back as he needed the oxygen most of the afternoon, because his baseline number was lower than it should be. For the most part he is in good spirits.

We had a plan to start adding thickener to all of his drinks because he is getting fluids in his lungs. There are a variety of issues with his chewing and swallowing. Thickening his drinks will help strengthen those muscles and ultimately make him healthier. I am usually willing to try just about anything, but really raised my concerns about this because I know how stubborn he is and he is has several eating quirks right now, one is he wants food that is the same as other people have. He is very aware and suspcious if you try to give him something different or tweek his food. The OT (occupational therapist) who first suggested and introduced this got to see first hand Gabriel’s unwillingness to cooperate today. He has basically taken 2(yes literally 2)sips out of straws since we introduced the thickened drinks yesterday. Right now he is on an IV with fluids, so he is getting hydrated but clearly that will not be the case when we come home. The last word was the OT was going to talk to the doctor and see what other ideas we could come up with. Oy VAY little man 🙂

We are in the hospital until he is able to be on room air, or off oxygen, for 24 hours. We are hoping (and planning on double checking) that they are taking into account that his “normal” oxygen levels are low.

Thank you SO Much to everyone for the support! We know our prayers are being answers! Keep praying! The meals, delivered groceries, care package ,etc have been IMMENSELY helpful! The most helpful things right now are prayer and meals brought to the hospital. EEEEKKK…

LATE BREAKING NEWS: as I was typing this I got a call that Gabriel is now vomiting ;( Poor kid. So obvious step backward. Keep the prayers coming!

well, we stayed out of the hospital for a year. But Gabriel is currently at local children’s hospital. He has been very sick this week-coughing, letharic. We started antibiotics on Friday after a doctors visit. He had fluid on his lungs. There has been no improvement so we decided we should take him to the ER tonight. He has not been able to stay awake or move on his own at all. I have very sick too with a sinus infection. They are giving Gabriel oxygen, fluids and iv antibiotics.

I never imagined the site of an EEG screen would bring me to tears but this one did! See all those little lines? They are staying where they should be! Or at least they are  not jutting wildly up and down while they cross the screen. We are not doctors but we know this looks goooooood! 🙂 We’ve seen the bad and it looks nothing like this.

The last month has been a whirlwind. I literally can’t count the number of doctor and therapist visits we have had. We got the results from the tests with this developmental psychiatrist. We were not at all surprised to hear that in some areas-specifically impulse and attention, he functions at a 2 year old level. Thankfully he in cognitive areas (abc, 123) he functions more like a 4 year old. Pretty darn amazing considering what his brain has been through with seizures and drugs the last 2 years.

Based on the impulse results and A LOT of research on Chuck’s part, we decided to try a medication for ADHD. Instant positive results! We still have a LONG way to go but I feel like the ADHD medicine has helped his brain slow down enough to process basic life skills. One example would be undressing. He can actuallystay focused long enough and remember what he is doing. Before, it was one of many life skills that completely escaped him. We tried so hard, we practiced and practiced and practiced, but every night when it was time to change into jammies, it was like he literally didn’t remember what he was doing.  Getting in the car is another one! I usually had to plan to leave an extra 10 -15 minutes early to have to get him from the kitchen, out the garage door, into his car and buckled. Now I may have to remind him 1 time to sit down! We got to therapy 15 minutes early last week!  We are getting better reports from school as well. 🙂 He is joining in group games and we have witnessed him really interacting with his peers, not just engaging in parallel play.

2 years ago we went from a perfectly healthy child to a very sick child. Last year we went from a sick child to a healthier child with a host a special needs (physical, emotional, and mental). For the first time in 2 years I feel real hope that we have the resources in place for him to beat this thing.  We are adding a gastro specialist as well as a pulmonologist to his team because of low oxygen levels. We are working with the school district to find the BEST spot of him next year. We are continue to work with physical and occupational therapy as well as speech and behavioral therapy. There are moments when keeping track of all the appointments and paperwork can be overwhelming but then I spot and give THANKS that we have all of these amaze resources! What a blessed boy! Today I am overwhelmed with hope and joy!