What A Week

Once again, I’ve been a bad blogger this week and even worse commenter. I’m sorry. We’ve been busy with Grayson’s ever-packed schedule as well as going through some things I’m not ready to talk about right now. But we are fine, and I’m happy to say I am showered and in my jammies at 7:16 on a Friday night. Such a wild life I lead.

The nursing home stay on Monday was, well, fine. It took us 2.5 hours to get there and the place was a dump. The whole time I was just feeling so sorry for the people who have to live there full time. We were only there 13 hours and got out as fast as we could. We were technically allowed to leave at 12:01 am, but Grayson was sound asleep at midnight so we just decided to let him sleep until he woke up. He woke up vomiting in the crib at 4:30 (typical for him) so we packed up at were home by 7:30. Not something I want to do again, but the benefits will be well worth it!

Chillin’ in the mauve room



His very own tiny pink crib- ha!

Tuesday afternoon, we saw a new doctor- a doctor of physical medicine. She was looking at Grayson’s development, delays, and muscle tone. Nothing earth shattering- we discussed his stiffness, and she said he might need muscle relaxers at some point, but not now. She wants him in his stander every day as well as for us to do stretches of his legs. She wrote a prescription for AFOs (custom orthotics for his feet), a bath chair, and a wheelchair. I can’t believe we’ll be ordering a wheelchair for our kid, but it will be a good thing, especially with him going to school next year. I am VERY excited about getting him a bathchair- since he can’t sit up on his own, we are still bathing him in the infant tub, on the counter. It’s a mess.

Yesterday, we schlepped down to the Med Center for a 10 AM opthamology appointment. We arrived at 9:45 per the request of the office. At 11:15 we still hadn’t been seen. Grayson was tired and cranky, and Ryan and I were tired and cranky. I made Ryan ask how much longer and the doctor still had 2 patients ahead of us! I was done. We left. I am so annoyed by the whole thing that I am seriously considering changing doctors. I just don’t understand such a lack of respect for people’s time, especially when they know we are waiting with young children. Ugh.

Another reason we left the doctor, other than being supremely annoyed, was we had an appointment with our attorney to sign the papers for our will and Grayson’s special needs trust. We are so grateful to have this taken care of and that we have measures in place so that G will be taken care of the rest of his life.

Today we didn’t do much- we spent the afternoon at my parents’ house and my mom and my sister entertained G so I could get some rest- such a treat! I work this weekend so my boys will be on their own- will be interesting to see what adventures they have- ha!

Hope everyone has a great weekend!

6 thoughts on “What A Week

  1. Sounds busy, and not too fun. 😦 Sorry!!! I hate waiting for doctors too. I'd totally change to a different one, that's just too hard for a little guy to handle. But I am very excited about the shower chair for you! That will be such a help!

  2. Whew, what a week indeed! So so happy that the nursing home visit is behind you and you will be receiving the benefits! Oy for the Dr. office, that is not fun at all, I think changing is a reasonable plan! Hope you have a great weekend and a calmer next week!

  3. That does sound like a really crazy week. And how rude that that doctor wasn't so late seeing you, and would have been even later. Ugh! I'm glad you're getting the resources you need to better care for your sweet boy. He is so incredibly lucky to have an advocate like you ensuring he gets the best possible care. Seriously, that boy is as lucky as his mom is. 😉

  4. It's so irritating when MD's appts are overbooked and you end up waiting so long. It is disrespectful, as if our time is so much less important than theirs?!

  5. Sounds like an exhausting week! I definitely think you should go see a different ophthalmologist – how rude to leave you hanging like that! Hope you had a very nice weekend!!!

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