Catching Up

Wow, I haven’t posted in over a week- not because I haven’t wanted to, but just because I was having major writer’s block and nothing really that interesting has happened to us in the last week. Which honestly, is a good thing. It’s been nice to have a vacation from crisis es! So because nothing that interesting has happened, and I don’t really have one topic to write about, I present another bullet point post of randomness…

  • Thank you everyone who offered me encouragement and understanding on my last post. It’s nice to know I’m not the only one who gets bored. This week has been better- I am back to making a habit of planning at least one out-of-the-house outing a day. And Tuesday, my amazing friend B came over with her daughter and stayed with Grayson while I went and had lunch with a friend and got a long-overdue eyebrow wax. And even better, they wore the little guy out and he napped most of the afternoon- ahhhhh.
  • My friend Esperanza posted this yesterday about an iphone app she had recently started using called Motivated Mom. It’s little pricey for an app ($7.99) but I went ahead a bought it today and I think it’s going to change my life. Each day, it gives a list of chores to do for that particular day. The idea is if you do a little each day you won’t be overwhelmed, and your house will stay clean. Well, let me just say after ONE DAY the house is already noticeably cleaner (and I know this because Ryan actually mentioned the house looking clean when he came home- yay!). And I know it’s totally mental, but having a checklist is SO motivating. It also lets you add chores not on the standard list- reluctantly I added “Poop Scoop” to be assigned weekly- bleh. But with 4 dogs, it MUST be done. One of my “chores” left for today is scrapbook/work on baby book. Ummm…does blogging count? I think yes.
  • Speaking of iphone apps, I am still totally addicted to Words with Friends. And I’m worried this doing chores every day thing is going to cut into my WWF time. Priorities.
  • And now for a downer. I have decided my very least favorite part of parenting is food. If my thoughts were in a pie chart, FOOD would be a really, really big chunk. And the thing is, my kid eats NOTHING. Literally, nothing. Well, except for the 770 mL of Pediasure being pumped directly into his stomach every day. It’s so, so frustrating, especially when he adamantly refuses the few foods he actually used to enjoy. And him being tube fed is really messing with my head. I have a hard time looking at other babies/toddlers and wrapping my mind around the fact that they get their nutrition through their mouths. That they don’t “eat” all night long while they are sleeping. That they aren’t connected to a backpack or pole most of the day. That they understand the connection between their tummies being hungry and food on their highchair tray satisfying that hunger.
  • BUT, on the bright side, we are slowly transitioning to bolus feeds! So far we have done 2 hours on/2 hours off during the day and continuous at night. G has also done two 1 hour feeds (just doubling the rate of the 2 hour feed) and he has kept it down except for a little spit up this afternoon.
  • G is having surgery two weeks from today- he’s having a muscle biopsy and getting his G button placed. I am having mixed emotions about the biopsy- I know it’s going to hopefully give us valuable diagnostic information, but ugh, POOR BABY. I am still waiting to hear back from audiology (I’ve left 2 messages with them and no response, grr) to see if they want to do G’s hearing test while he’s under anesthesia. The surgeon was concerned it may be too long a test to keep him under, so I really need to talk to them.
  • We are going to a support group meeting on Saturday for families affected by mitochondrial disease. I am excited and nervous to meet people dealing with the same things we are.
  • We’ve been doing a lot of swinging lately. Swinging inside, swinging in my arms, and swinging outside at the park. G is most happy when he’s in motion. See? Pure joy.

8 thoughts on “Catching Up

  1. i love how he's happy in a swing! i should put blaine in a swing and snap a pic real fast. you'd laugh at the hysterical screaming! sounds like things are going better for you!

  2. First of all, yeah for Motivated Moms! Now when I'm doing the stuff on the list I'll know you're doing it too! I think that will help me get stuff done. ;)Also, I just wanted to say that feeding my daughter is my all-time least favorite part of parenting – and she doesn't even have an aversion to it! I feel like I spend 90% of my parenting energy thinking about what she should eat, getting what she should eat, preparing what she should eat and then watching her not eat what she should eat. It sucks. And is so stressful. I can't even imagine how hard it is for you. I just wanted to let you know that I think the eating this is a big deal for a lot of parents. I guess eating is something that causes problems for people throughout life. Sometimes I wish I just didn't need food myself. It's such a pain in the butt!

  3. He looks happy- Elmo looks squished! πŸ™‚ The food thing is pure craziness. I think it is one of the most complex topics ever- seriously. I missed out on enjoying my G so many days/months really years because I couldn't grasp why she wouldn't eat. I think one reason is because it is so frequent. You can't go more than a couple hours without being reminded that his food is in a tube – it is "in your face" through out the day and that is exhausting. No doubt it is an issue you will work on but don't let it overtake your thoughts or rob your joy. Grayson is precious and so what if he eats a differently than the other kids at the park? He still gets to be at the park plus he already has material for an intriguing biography! πŸ™‚ Hugs to you- your an amazing mommy!Bridget

  4. Eekk….those pictures could not be any cuter, adorable! Glad things are calm and moving along. Happy you are going to a support group, I bet it will be interesting and nice to be able to talk to people about similar topics. xoxo-

  5. I am so in love with these photos! He just keeps getting CUTER – and I didn't think that was possible! I also second Esperanza. Not to compare my situation to yours, but the constant cycle of food demanded, made and ignored is stressful and also my least favorite part of the day (excepting diaper changes, of course!). Plus, it's making ME gain weight, since I'm eating all his leftovers! Crazy babies. ❀ Hope the support group went well!

  6. soo great to see you all today! Really glad you and your husband came! And oh my goodness..Grayson in those swinging pics is just adorable (I mean he is cute all the time…. but those melt my heart!):)

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