Update: June 2016

I have been seriously slacking on the blog posts for the past few months. I am really hoping to get back into posting more regularly. We did have a couple of rough months, so I didn’t have a lot of spare time or spare energy to devote to the blog. I do want to say a sincere thank you to everyone who takes the time to read and everyone who has told me how much they like reading the blog. I really appreciate it! It is nice to know I am not the only one who cares about it! I think we are overdue for an update on what the little ladies are up to these days, and perhaps a bit of a recap of our past few months. So here goes…

I’ll hit the highlights of our last few months first. I shared a pretty detailed post when Addison was hospitalized in the beginning of April with respiratory issues, so you all know that story. That started off the crazy. April was a rough month for our family. Of course, by the time Addison was home and feeling better, Violet and Oriana had started with colds. A week later, we were finally all healthy again! Then, our corgi ran into a metal leash holder while I was playing fetch with her, and ripped a five inch gash in her leg that earned her a trip to the emergency vet and cost over $400. (She’s a big baby, so they had to sedate her to sew her up. Plus she was on an anti-inflammatory and antibiotics). Ryan’s grandpa was admitted to the hospital with a fairly minor stroke, sent back to the nursing home, ended up in the hospital after having a major stroke, and was sent back to the nursing home on hospice. He passed a couple days after returning to the nursing home and he is greatly missed. Violet and Oriana got another cold around the last week of April (sooo much snot). I was worried about Addison catching it and, inevitably, she did. Saturday, April 30th, she started with a snotty nose and some sneezing. I wasn’t thrilled with how she looked Sunday morning when I got home from work, but I did what I could for her, and decided to see how she was doing after I got a few hours of sleep. When I got up, she looked worse and she was working too hard to breathe. So we packed up and headed to the ER. She ended up requiring vapotherm again, which means we went back to the PICU. They thought this round was just a viral infection, so no antibiotics, but it really kicked her butt. We were admitted from Sunday to Saturday. She came off vapotherm relatively quickly, but it took until Friday to get her off regular oxygen completely. She was admitted Sunday afternoon (the 1st), and grandpa passed away that night. The services were Friday afternoon/evening, so we left her at the hospital alone so we could go. It was the longest we have ever left her alone at the hospital (at least since she was in the NICU), and it was nerve-wracking to say the least, even though she was doing well at that point. Obviously, that was a rough six weeks or so for us; a ton of emotional stress and plain old exhaustion. Things have finally settled down and I certainly hope that continues for a long time.

Now that Addison has gotten over all the respiratory issues, she is doing just fine. The past few weeks she has been rocking PT and OT! She was holding her head up so well and being so active a couple of weeks ago, that her physical therapist decided to put her in an assisted standing device and she did awesome! She was putting pressure on her feet and legs to stand and even took some little steps. She knows she needs to bring one foot forward at a time. We are working to get her standing more and putting weight on her legs. My biggest challenge is wrestling her into her leg braces. Addison started seeing speech therapy again. I requested a different speech therapist than the one we saw before because I didn’t feel that she did a lot to help us out. Our new speech therapist has been great and I think that she will be a great help to us. After a couple of months of issues, we have also started back with Help Me Grow services. I had some problems with our previous developmental specialist and requested a new one, and that was a much more drawn out process than seemed necessary. However, we finally got a new Help Me Grow team and I think they will also be very helpful to us. We just recently switched from plain rear-facing infant car seats, to convertible seats that go all the way up to boosters. (They finally outgrew those infant seats; it just took a while). This has presented me with a bit of a new challenge because Addison cannot sit in a regular high chair or shopping cart. We are also looking into getting her a pediatric wheelchair because she is fast outgrowing the strollers and it is difficult to position her well in them.

Violet and Oriana. Oh, these girls give me a run for my money most days. They are into literally EVERYTHING! I always joke that they aren’t happy unless they are doing something they aren’t supposed to be. Their latest favorite game is emptying the cupboard of all my dishrags and towels and carrying them around, putting them in their shopping cart or stealing a big bowl to put them in, and generally just throwing them all over the kitchen and living room. They love to play outside and they love to go for rides in the stroller. (To be clear, they hate the stroller if it is not moving, but as long as it is moving, it’s the best thing ever. Seriously though, no breaks allowed during a walk, or screaming will ensue). They are determined to get their own way; it is a constant battle of wills. A couple weeks ago, I was forced into negotiations with the little terrorist who is Oriana about going outside. She wanted to; I didn’t. Well, she climbed in my lap and screamed and cried big old tears and begged for “shoes” and “outside” until I broke down and took them for a walk. That girl knows exactly what she’s doing.

Oriana says a lot of words; she will repeat just about anything you say. She’s started to string a couple words together too. Her favorites are “oh no” and “there go” (there you go, because I apparently say that a lot). This kid is not a big fan of eating; a couple of bites are generally sufficient for her, but she loves her milk. She downs a whole cup without breathing and then asks for more. And then, she steals and finishes Violet’s milk. I’m pretty sure she drinks half a gallon a day all by herself. I feel like I’m constantly saying, “we need milk!” Violet loves to feed herself with a spoon or fork. She doesn’t say as many words as Oriana, but she’s finally getting some (like milk, more, dog, car, shoes). She still loves blankies. Violet can throw a tantrum like no other. She has got quite the little attitude. She’s mommy’s helper: she watches me and she wants to help do everything. She loves to give kisses to all of us, especially Addison. Violet and Oriana loves Addison so much! Oriana likes to give her hugs and kisses too. Addison sometimes sleeps in a pack-n-play in my room during naptime and occasionally at night. If she is not in her crib in the morning or when they get up from their nap, they are immediately pointing at her crib and asking for her (Addis?). Violet and Oriana are completely off bottles; they finally embraced the sippy cups. They love to eat anything that Mommy or Daddy is eating. They love to read; their favorite book is “Go Dog Go,” we read it every night before bed. They are slightly obsessed with dogs. Their bedroom window overlooks the street, and they like to look out the window and check for dogs. They are always super excited when we get up in the morning and Jackson and Tesla are downstairs. Oriana is a Daddy’s girl and Violet is all about Mommy. Violet is generally more outgoing and willing to explore and Oriana is more timid. If we take them to the park, Violet likes to walk around, but Oriana refuses to move if we put her down. Oriana does tend to warm up to people a little bit quicker than Violet; Violet is slower to leave the safety that is Mommy’s lap. They have recently discovered the word “no” and realized that they can answer questions with it, so just about everything you ask them is answered with a “nooo”. They can climb stairs on their hands and knees. They also love to go bye-bye; they like to go shopping or out to eat or to Grandma’s. They just like to get out of the house for a while.

It is crazy to me that we will be celebrating the girls’ second birthday in a little over a month! It doesn’t seem like they should be two already. It is hard to comprehend how much has changed over the past year. Violet and Oriana are walking and talking and feeding themselves. At this time last year, Addison was still screaming all the time, we were still feeding her by mouth and struggling, and I was fighting her GI doctor and getting nowhere. We have made so much progress in so many ways. This stage has its own struggles and challenges to overcome, but knowing what we have overcome so far, helps me remember that we will make it through this too.

P.S. – In the interest of actually getting this posted, I decided to skip adding pictures to it. I’ll work on putting some pictures together and getting them posted some time in the near future.

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cmathes10

Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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