Can you believe it?! I cannot. Hands down, fastest year of my life even with all we had going on with this boy. He kept us busy and the days/weeks/months seemed to fly by. At the same time, he just didn't seem like a one-year-old to me. I know it's because he's not doing everything typical kids his age are doing - he seemed so babyish to me still - but the calendar doesn't lie. He's officially a year old.
Shortly after he turned 11 months old, he started taking Vigabatrin to help control his infantile spasms. After a week or so on that medication, we stopped visibly seeing spasms. It was wonderful. He quickly came back to us and started smiling all day long, interacting with us on another level, actually PLAYING with toys. He was a different kid! That gave us hope that this medication was working but I couldn't breath easy until the EEG came back clean. He had an EEG scheduled for July 27th.
On July 23rd, I took Baker {and the girls} to his first appointment at the children's sleep clinic. It's recommended that kids with Down syndrome have a sleep study done before the age of 4. They're at a greater risk for sleep apnea and obstructed airways and while we were inpatient for infantile spasms, pulmonology rounded on him and recommended we start this process sooner rather than later. I figured it'd be a quick visit and that maybe we'd get a sleep study scheduled for 6 months down the road.
Silly me....
Instead, the pulmonologist questioned his noisy breathing (he was congested like always) and the mild retractions she was seeing (definitely not his normal). His oxygen levels were also low - hovering in the high 80s when he's normally in the high 90s. She was concerned he was coming down with an infection or pneumonia and recommended we make pitstop at his pediatrician's office on the way home or head to urgent care. I have no desire to try and explain Baker to yet another random doctor so I called our pediatrician.
She was out of town (BECAUSE OF COURSE SHE IS) but we could come in and see one of her partners in the practice.
The next two hours went something like this....
Stand-in Pediatrician: Why did you come here? You should have gone to the Children's Hospital
Me: I was just at the Children's Hospital, they told me to come here.
Stand-in Pediatrician: You should have gone to the ER.
Me: Welp, here I am, can you help me?
Stand-in Pediatrician: I don't know, we're not an ER.
Me: Perfect.
Meanwhile....
Leighton and Gracyn: Mommy, look! Mom! Mom! Mooooooooooom! Stop, sissy! Stoooooop! I'm hungry! I'm starving! Ugh I just wanna go hommmmmmmme!
Me: *trying not to sweat and texting Justin begging for help*
Justin arrives to save the day and takes the girls to the waiting room. By this time the stand-in pediatrician has decided to give Baker a breathing treatment to see if that helps his breathing and oxygen levels.
It doesn't. So he tries a second breathing treatment. I send Justin and the girls to go pick up our grocery order and head home, assuring him we'd be close behind.
Silly me....
Stand-in Pediatrician: The breathing treatments aren't working.
Me: Ok...
Stand-in Pediatrician: Let's put some oxygen on him and see how he does. I'm going to make some calls.
Me: *trying not to sweat and frantically texting Justin that HE'S MAKING CALLS OMG WE'RE GOING TO BE SENT TO THE HOSPITAL BECAUSE OF COURSE WE ARE*
Stand-in Pediatrician: Yep, he's gotta go to the hospital.
Me: I JUST CAME FROM THE HOSPITAL.
Stand-in Pediatrician: He's gotta go by ambulance.
Me: BUT I LITERALLY JUST. CAME. FROM. THE. HOSPITAL.
Stand-in Pediatrician: Sorry.
Me: *trying not to cry and texting Justin to pack a bag....*
What was supposed to be a quick appointment turned into his very first ambulance ride and a 4-day hospital stay thanks to these low oxygen levels. His viral panel was negative but we do think he had some sort of upper respiratory infection. And because of their anatomy, kids with Down syndrome are more likely to require oxygen support if and when they get sick. The common cold may be no big deal for the girls but for Baker, it takes a greater toll. It also didn't help that he'd just finished a strong round of steroids and was further immunosuppressed.
By the 4th day, we was off oxygen while awake but still needing it during the night. Our new pulmonologist pushed for us to be able to go home with oxygen so we could monitor Baker at home and use it as we see fit. This will hopefully also keep us out of the hospital should he get sick again, since we'll already have the supplies we need. We were discharged just in time to head downstairs for our previously scheduled EEG before heading home.
A few days after coming home, Baker started sitting up unassisted! Like, actually sitting on his own! It's amazing. He's been working so hard and up until a week or so ago was still pretty unsteady. It clicked seemingly overnight and we couldn't be more excited.
Baker also graduated from his helmet last week! He wore it for four months and it made a huge difference. It was a hot and sweaty summer with that bad boy so we're glad to put it behind us! Perfect timing, too, because we found out Baker needs glasses! This was his 2nd eye appointment that showed astigmatism and farsightedness so we'll see if glasses help with his tracking and focusing on things up close.
And the best news of all... his EEG results came in the other day and it showed a vast improvement. Baker's infantile spasms and seizures are gone. It was a huge weight lifted off our shoulders. The EEG still showed some abnormalities, which we expected, but the other bad stuff was gone. He'll continue taking Vigabatrin for the next couple of months. At that point, we'll be able to hopefully wean or switch to another maintenance drug to keep the seizures at bay.
I've told several people that infantile spasms has, by far, been the hardest diagnosis to cope with. The treatment is hard (and not guaranteed to work) and we don't know how this will affect him long term but if the progress we've seen these last few weeks is any indication of Baker's future, he's going to be just fine. We're excited to hopefully close this chapter and focus on getting back on track with his therapy and development.
Whew. I'm exhausted just recapping this last month!
You're totally worth it, cute boy. Cheers to ONE. May your next year be filled even more love and happiness, a few less hospital stays and zero ambulance rides.
12 Months of Baker. I cannot handle this!
And because I like to make myself cry, all three of my babies at one year...
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