Milestones

• Kimball has been doing awesome with his potty training. He does great if he's naked or wearing underwear but once the pants are on, he has accidents. We haven't tried going to the store in underwear yet but I'm hoping to do that this week.
• Cora Belle just develops so quickly now, I can barely keep up! It's a wonderful kind of keep up I'm not complaining. Last week Ginette said she'd be crawling in a month. Nope! It's official as of today - crawling is her main mode of transportation! She's also started pulling herself up onto her knees and I'm shocked. I just did not expect her to develop so quickly after her surgery. 
• Jan did Cora's reevaluation this week and she's at about 6 months for her eating. This week I'll get further details and a full written report from all of the therapists at the school. She passed both the hearing tests and I'm eager to see exactly where she is - the dysphagia and aspiration really sets her back but she's still made so much progress with her eating since the surgery. I'm anxious to get exact details. Oh! And pretzels, she can eat pretzels now which I didn't think would happen for several more months to come.
• This week our schedule changes with the school. Thus far, Jan and Ginette both do in-home therapy with Cora, it has been so nice! But this week we are adding occupational therapy in-home and having ST and PT at the school back to back. I'm ready and really anxious to start doing it at the school, I know they have more and better equipment that isn't very portable and I'm anxious to meet more families at the school. It's going to be great, I'm so excited for Cora!

And something super cool, the owner of Chuck E. Cheese is Sam, an 85 year old man who opens up the restaurant twice a year for the Guild School staff and families. All of it is free of charge and unlimited pizza, pop, and tokens. We went to it this last Tuesday and it was so amazing to meet the other families who benefit from the Guild School and to meet other therapists and teachers. Such a humbling, joyful experience!

Pediatric Pulmonology

Look at this little lady, isn't she something?!

This was at the beginning of a very looooong, SIX hour doctor appointment at the hospital. One doctor appointment! And if you know Cora, you know she was just as happy and smiley at the end of her appointment as well. We finally got in to see the pediatric pulmonologist for her respiratory issues. She's had coughing and congestion her whole life and I've always chalked it up to aspiration, which is fair because she does have it quite badly. But since having revisited that and taken all the necessary precautions since her last swallow study post op, she still has the same breathing problems. We saw the ENT and he did a nasal culture finding a Strep/Pneumo bacteria in her nose from the aspiration. After we followed the course of treatment her nasal respiratory has been clear. Last week we saw the allergist again and did a skin test of environmental elements and she tested negative for all of those. Which brought me to the head honcho - pulmonology. And boy was I sorely disappointment!

The visit was six hours. Enough said right there! The first several hours was nothing but discussion and Q&A about Cora's health starting at her prenatal care. Yep, it took us that long to discuss her history. After that long discussion I thought he would finally make this educated declaration and tell me what the problem was or what images we need to have taken. Nope. He said he doesn't know what's wrong with her and is going to treat her like she has asthma. There is no asthma testing for children under six years of age so the only solution is to treat her with a nebulizer and see if it works. That's it?!?!?! I wasted six hours of no bathroom or food breaks to hear that? I was dumbfounded and upset. He then said that he wants to get a sweat test to see if she has cystic fibrosis and that the chest x ray from September showed abnormal blood flow in the bronchial tubes likely from her ASD. I'm happy to comply with the CF test, the more tests the better. But he didn't say anything else about the bronchial tube thing......something is not right here.

So we are back to guessing games. I'd rather they do every test and image and x ray needed to rule out other diagnosis' or potential problems. I'm really frustrated that he wants to treat her for asthma, simply because he doesn't know what is wrong. True, she could have asthma and I could be totally overreacting. But I don't feel like I am. This guy is supposed to be the best and I feel like he isn't taking it as seriously as I think he should be. I understand she isn't his first priority, but she's priority enough and I spent months on the waiting list to get into his office and an additional six hours of lengthy medical history just to be shoved out the door simply because he doesn't know. Ugh....I know I have a bad attitude about this and I really want to change that attitude but I just can't shake it. I'm still frustrated about the whole thing!

Oh and the CF test results came back on the "high end of normal" so I have to go back in to have the sweat test done again and more blood work just to be absolutely certain that she does or does not have CF.

My Cubs!

I LOVE this kid!

Cora Belle

Old Pictures From Lance's Phone-These Go Way Back to February

Random shots from around the house, Cora is about 3 or 4 months here. Or maybe two months.....I don't know!

 Oh! Poor baby....laying on a towel to soak up the horrible spit up.

This picture is bittersweet, it was the kid's first bath together and I had to take a picture of that. But it hurts seeing how skinny Cora was, how much she hated baths, and seeing her awful rash which was luckily not in it's worst stage yet. Just so many problems yet to be diagnosed and treated which makes me cringe - she was in so much pain and discomfort! I just didn't know how to help her. I guess when I look at the picture I'm also flooded with guilt.

 

Oh poor baby! This was the adorably cute Easter outfit Donna got for Cora and it just drowned her. She was so little because she couldn't keep anything down, I always had towels or blankets under her.

Singing Valentines!

Easter Part 2: My visiting teachers invited over their whole list of sisters for an easter egg hunt and treats. It was nice! Left to right is Julie Ramos, Liz Roe, me, Rika Stokes, Heidi Lewis, and Dana Batt. (Rika is holding Cora).

These are a few from work. 

1. Lance's boss Caryn (left), pictured with Laurie

2. A few are various ones from a company bbq dinner

3. The eagle picture......This is great! Lance went to a week long trip to Portland to attend a series of manager training meetings. Throughout the week the participants all voted on who brought the most to the table - the winner was Lance and he won this ginormous eagle painting which is currently hung in his office.

Do You See What I See?

A Few Fav Pictures From Last Week

Operation Potty Training Commencing

I finally started potty training Kimball this week. I know, I should've done it months ago but things kept coming up and I wanted to be as consistent and dedicated to him as I could for this. He's done great so far and is pretty much training himself. He hasn't gone poo in the toilet yet but I'm sure we'll get there. Good job buddy!

Cora Update

Cora just keeps getting better and better. She still has a lot of obstacles to overcome but comparing her first six months of life to the last four months - night and day difference! I still can't believe she's 10 months old and I'm already planning her first birthday celebration.

She saw the allergist again this week to do an environmental skin test. There were about 15 or so pokes and they all came back negative. Good and bad news there, we still aren't sure why her breathing has been so yucky. We're still hoping the pulmonogist can give us some answers in a couple weeks. I've introduced sweet potatoes and peas without allergies and got the go ahead to give her bits of bread and Cheerios. She certainly loves it!

Ginette has finished her six month evaluation and I get the results this week. I'm guessing her adjusted age is about 6 or 7 months. I know the guild school will start occupational therapy for her, I'm just not sure when. The past two weeks she's met some "big" milestones! (Any milestone for her is big, so I'm counting everything). She's finally rolling consistently and rolls to get to places or objects that she wants. She now sleeps on her tummy with her little bum in the air (my favorite) and is figuring how to go from tummy up to her knees as well as from sitting to her knees. Big things for her!!!

I know the neurologist said she'll never catch up but thanks to her therapists, Cora is proving him wrong. I'm so thankful for this sweet girl!

Living The High Life

Chocolate milk and a straw

Mom & Christine's Visit

I'd been anxiously awaiting this trip - Mom and Christine and Zander came to Spokane!!!!! It was so great! We visited the Green Bluff farms, Riverfront Park, Manito Park, the best toy store ever The White Elephant, went shopping, more shopping, eating, visiting, and lots of laughing. It was great, come back soon!