After a full night of studying, I left Karen
alone with Landon to go and take my systemic pathology test this
morning. This was the first time either of us has been alone with him at
home and, of course, his apnea monitor went off for the first time
while I was gone. The sensor had detected that Landon stopped breathing
for 20 seconds before sounding an alarm. The alarm on this monitor is
extremely loud and Karen said the apnea spell ended almost immediately
after the sensor sounded. In all likelihood, the volume of the alarm
scared Landon into taking a breath, resolving the issue. I know we both
get frustrated with the wires always being in our way having to carry
around his monitor everywhere with us but it is definitely reassuring to
know that we will be aware any time his health begins to deteriorate.
the afternoon, Karen gave Little Goat his first bath at home. She was
finally able to get the dried up ultrasound gel out of his long locks
and scrub beneath the band around his chest. After some full body lotion
treatment, Landon went into a new sleeper and napped while Karen did a
full house scrub down. It's amazing how much she was able to accomplish
despite being worn out from our new intermittent sleep pattern. I felt a bit like a lazy bum by comparison but I know I put in my hours last night and early this morning. I can't imagine having to do this alone and I couldn't ask for a better partner. We understand each other and manage to have great patience.
Sadly, Landon had seizures several times this afternoon, including one that was of medium magnitude. We aren't sure what triggered these episodes but we were able to get them back under control by around 7 o'clock this evening. We are certain that the strongest episode was triggered by the vibrations in Landon's bouncer. He enjoys sleeping in the monkey bouncer but the addition of gentle vibrations proved to be too much stimulation. This came as a surprise to Karen and I because he is always soothes when we rock him and walk around the room with him but apparently the different movements stimulate him in different ways.
While the seizures are still scary, we have become much calmer in responding to them. The apnea monitor assures us that he is still breathing, he never has a seizure we are not around for, and he usually only cries briefly afterward. In fact, Brit and Steph came to visit again today and he actually had small seizure while Steph was holding him. We all stayed calm, let his episode pass, and rocked him back to sleep. After the girls left, my classmates and friends Sabra, Ramon, Mike, and Bri brought us dinner and took some time to hold Landon for the first time. By then, his seizures were under control and he handled the extra attention extremely well. I think we've found a few new babysitters!
We've realized that Landon has the habit of being fussy
between 2 and 6 each morning. He will go the entire day with nothing but
smiles and bright eyes but come his 3 am feeding he is not a happy
camper. Tonight (5/4/13) marks the third night in a row he has cried for
at least 2 hours during that gap. It's no wonder he sleeps most of the
day because the theatrics he puts on at night must be exhausting. I
don't mind a fussy baby but he could have picked a different part of the
day to be his sad o'clock. We have tried changing diapers, walking
around the room, rocking, patting, burping, feeding, music, silence,
lights, dark, etc. So far it seems like we are just going to have to
wait out these grumpy spells.
While rocking Goat tonight, perhaps in an exhausted delirium, it crossed my mind that it is funny how opposites work. For high to exist, there must be a corresponding low. We would never recognize beauty if there was no ugliness. At that particular moment, I was trying to soothe the sadness that juxtaposes a daytime of happiness. While I was frustrated by his cries, as I'm sure I will be many times, I guess I should be thankful that he has these moments of sadness because without them I would never appreciate the beauty of the moments when he is happy. It is very possible that in the future we will have some times of intense sadness. Hopefully, in those dark hours, we will remember that even in those lowest moments we are blessed and that it is only for those dark hours that we can appreciate how wonderfully happy we are now. Even in the hardest times I know we will survive because we have each other, our friends and family, and our faith.
Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. - Joshua 1:9
While she was here, Steph showed us the new wristbands she had made for Landon. With the logo "Team Landon" in white on a baby blue band, I think they turned out very handsome and are a great idea. She is selling them as a fundraiser for Landon's medical expenses but I already like wearing mine as a reminder of all the lessons Landon teaches me. It's easy to forget to live in the moment and approach the world in a loving way when he's not around so hopefully carrying an emblem of him with me at all times will help remind me. The wristbands also stand as a testament to the amazing support and camaraderie we are surrounded by. The Class of 2015 is selling these wristbands for $3 for one or $5 for two.If you are interested in having a "Team Landon" wristband, email Stephenie at email@example.com with your name, quantity you want, and shipping address. Thank you for any and all support, whether in thoughts, prayers, or otherwise.