Weekly blogging, a few days late...

I have been attempting to blog weekly, but I see it has been awhile. I have been getting behind in most tasks these days. Even on home days I feel I never stop moving yet somehow don't accomplish too many things. It is a never-ending cycle of motion through the day that blends into the night. Owen also has been up every 1-2 hours through the night the last week. Before that he was giving us a break of about 5 hours of straight sleep for 2 nights. Just enough to get really excited for. He has another molar peeking through, crazy how a small thing can cause so much discomfort. I guess that is what it is keeping him (and us) from resting, but it is no fun for anyone. I have been doing some silly tired things...Cut Chris's hair too short the other day, and today put dish soap in the dishwasher and had suds all around to clean. Would have liked to spend Owen's naptime doing something else, but oh well. That's the way the tired Chelsea functions. I am going to look through iPhoto to see if there are any new pics. I always have some new ones. Since the last posting, I gave a bridal shower for Aunt Jac, Owen started his OT therapy, the sun decided to make an appearance, and Owen's best friend Evan has been in the hospital for a week now. It has been a busy June so far. Maybe this blog will just be summarizing these topics and pictures next time. Just goes to show you how much planning I do...

SHOWER

Bridal shower was so fun, and the food was so darn good. I think I may open up a catering business, JUST KIDDING! It was so great to spoil a dear sister friend, and it was lovely even though the weather did not cooperate. Made some spiked peach punch that was potent and so good! All of the attendants wore hats and she showed up unsuspecting! Her mom provided her a hat with a veil, so fitting!

OWEN's OT

Owen had group therapy on tuesday. I looked at the schedule the morning of to make sure I had the time right and OOPS! It said 1045 not 11. Well guess I don't really need a shower. That is why ponytails were invented I guess. We rushed out the door, started his feed, and got lost trying to find the location... I was driving on the street but couldn't see the address numbers... Pulled up into the wrong parking lot (beginner's mistake) when Owen had 2 more ounces to go... I could have "called it good" and just stopped it but I wanted him to have the whole thing. So I hooked the bag to the backpack and tucked the pump inside, unbuckled Owen, and loaded up my purse. And then Owen started gagging, and threw up in the parking lot. Cleaned him up and wobbled across the way to the right parking lot/building. (Yes a stroller would have been a GREAT idea but I left in too much of a hurry to attempt to get there in time...) Owen's feed starts to beep as we are walking into the front door. I disconnect him while holding him (don't recommend doing this while also holding a backpack...) We walk in the door at the hour of 1100, I am apologizing to the director. Oh, you are right on time, she says, we start at 11. Oh geez, my schedule says 1045 for every tuesday... Oh well. Long story longer, Owen had a blast watching the other children interact with a variety of textures, physical activity gym type of stuff, and swings. We had song time where we learned some new songs and reinforced the importance of repetition with song as a way to teach. It was very good. Then for our home visit the same day at 3, our therapist worked with Owen so much and thinks he has good muscle memory. We worked on him keeping him on all fours instead of flattening out onto his belly. We also brainstormed lots of ways to incorporate other food items into Owen's day. We have seen some improvement in Owen's gross motor skills this week, and he even has been chewing on his sippy cup! YAY!

SUN

It is beautiful, there are so many weeds in the garden, harvesting cilantro and lettuce, and watching the other plants grow. That's about it for now...

EVAN

Evan's parents have a blog and I am close to them so I feel it is okay to talk about. Plus I know how important it is to have so many people thinking and praying for you that I am going to chat a little about Owen's best friend Evan. He was recently diagnosed with a tumor in his abdomen that is confirmed to be cancerous. He will start chemotherapy on monday. He had very little noticeable symptoms until a week ago. He is uncomfortable as the tumor is pushing on other organs and systems. I was able to visit him for a little while this week, and try to be there for his parents. They were sure there for us when we were hospitalized with Owen. This sure is a different battle they are gearing up for. Evan just turned 1, and we were just partying for his first birthday. A week later, who knew this would be where he would be. Our hearts are aching for his strong parents and just lifting them up so high and attempting to give them so much energy to get Evan through this. We are there for you guys, and Evan is such a strong boy. I called Erika today to chat and she got off the phone when Evan started clapping to Dora. He must have been feeling a little better and she wanted to be a part of that. We love you guys and are here for you. If you haven't gained anything from my tired rambles, hear this~ love, honor, and respect your body. You never know when it will not work the way it does today. You never know when things can change. LOVE YOU EVAN!

Therapy starting...next week!

I have been wanting to do a garden update posting but as I am writing this it is thundering and lightening! We do have tomatoes on some plants, but I am really hoping they don't get too confused.

Owen had his Bayley Scales of Infant and Toddler development report shared with us today from the El Dorado Count Special Education Program. Man were we popular, 4 people showed up to review these reports, and make a game plan for Owen. Here is the summary of the results (I'll include only the interesting parts to spare you the full report.

One report was prepared by an Occupational Therapist.
Owen is age appropriate for Cognition and Fine Motor skills! Meaning, in a nutshell, he plays really well!
Owen is at the 6month age for gross motor skills, meaning he does not crawl or pull up yet.
Owen is at the 3-4month age for expressive language skills and sounds.
Owen is at the 7 month age for receptive language skills. Both this and the one above has to do with him not yet producing two different distinct vowel or consonant sounds.

The second report was prepared by a registered nurse.
Owen is at the 6month age for the 'daily living' section which includes eating. (Not to be confused with the ADL's in adults, but similar!)
Owen has some social emotional issues with touch by his mouth, face or nose.
Owen is at the social emotional age that is consistent with his actual age! Yay!

So, in a nutshell, not many surprises here. It is good to hear others assessments because as a parent you think your kid is amazing for blowing snot bubbles, so it is good to have an idea of where he is. I have to say at the moment, he is chewing on our leather coffee table. So he is standing and holding on and chomping down teething. I am pretty convinced with some great therapy he will catch right up with the Gross motor stuff. The other stuff will take some time, but as always we are SO lucky and proud of all that Owen has accomplished this year! He is so amazing to us and brightens our day every day.

So the next step is... group therapy once a week and home OT once a week.

O gagged the tube out on Memorial Day so we decided to trial it without the tube. He breastfed really well through the night but didn't breastfeed at all, take a bottle, or sippy cup for 6 hours. I was leaving yesterday to go teach a class and we both werent comfortable with me leaving (his only consistent intake) for hours. Also we tried to give him his aspirin in a syringe and this was also making him more orally defensive. So, we sadly put it back in and I went off to Roseville to teach my diabetes class. His issues aren't as simple as 'not taking the bottle,' and they took a long time to develop, so they will take a while to improve.

Ok going to get back to Owen. I have been connected to my pump and he is now an ounce into his feed. This post was written in a few sittings over the last couple hours.

Internet down..

Wow I have sat down at the computer many times this last week to do some blogging, email, online banking, you name it...and our internet has been hit or miss... Or like, dare I say... Dial up! Ewww!! So this time I sat down and here blogger is!

Owen has had many appointments each week, usually 3. He is in the process of getting qualified for home occupational and speech therapy. This will be so great for him to have these services in our home. In order to qualify, a baby has to have at least 1/3 deficit in 1 out of 6 developmental areas. The initial assessment summary was that he was delayed in his self care (eating), speech, and gross motor. We will get the full scores next week. None of these were surprises to us, and we also know that he isn't too behind. His social scores I think will be high!!!

Owen had his best ever echo today. I think it was due to Baby einstein being on the entire time, but he was still for 30 minutes. This is a very big feat for any child, let alone with someone pressing on your chest and neck. He never ceases to amaze us. The EKG was also performed in the "movie theater" and it was his best one yet. Didn't even cry until we we were pulling off the last few stickers!

Our cardiologist was pleased with Owen. He decreased his lasix to once daily (down from twice), and said he wouldn't need to see us for another 3 months! He is always accessible to us, but that was so great to hear. He is still hopeful that Owen's right side of his heart will grow normally and could someday function as a 1.5 ventricle kid versus 1 ventricle.

The next step for his feedings...

Our cardiologist is going to work with the GI doctor to get him on board. Via email, the GI doctor basically wrote me that he wasn't comfortable putting a gtube in Owen. This was a big source of frustration for us, knowing how much he has struggled with his feeding. It seems like he will have the nasogastric tube forever... But "the Riv" said he was okay with a ng tube out trial. As groovy as this sounds, I am a little realistic here. It has taken Owen 9months to have a negative association with food, so that doesn't all go away in a day without the tube irritating his throat. But, it is worth a try and we have never been in a situation with his weight to try it. Now that is not an issue! We do need to watch for him getting dry, as that is also hard on his heart. But when sick, "normal" kids don't eat for a day or don't eat much for a day, and we have always been on his regimented schedule for feeds. Wish us luck! Not sure when we are going to do this trial but soon. His tube is due for switching so it will be this week or next. If Owen does need the gtube (very likely) "the Riv" said it will be this summer, probably July or August, and that he would like to be there. So looks like Owen will have his ng tube until he is 1, unless he proves to otherwise be the moose he once was.

Carefree snuggle time

After an appointment with Owen we stopped at a nursery. The nursery was located at an intersection where across the street was one of my favorite bakeries. It is a gluten free/vegan bakery, which my diet is not, but they make darn good eats. So Owen and I did something we usually don't do together...TWO stops out in the world. It is a challenge during his feed to be on the road, let alone unhook him, unload him, re-hook him back up, run the feed, then unhook, and then re-hook and reload him back into the car. Also we have been minimizing his contact with the outside world at much as possible, so he doesn't make many errand runs with either of us. This whole process is made easier by two instrumental pieces of equipment: 1. The plastic claw hair clip 2. The BOB stroller. #1 makes it possible to hang his feeding bag from basically anything, and in our 10 months, we have hung it from light fixtures, dining chairs, jumpers, car seats, and the ever popular BOB stroller. Which brings me to #2. I am a frugal person. I will think and rethink any purchase. Given my passion for exercise and the rants and raves of other BOB stroller owners, we made the purchase of the stroller (at first a little hesitantly, admittedly, due to the cost) from REI before Owen was even here. I have never looked back. It is an amazing creation, and it is a garden cart, mail toter, grocery cart (went grocery shopping with Wynt once after a run with Owen) and egg collector, in addition to concealing Owen as well as providing many areas to hang his feeding bag on. I recently hosed it down and it looks brand new. It was getting dirty from our daily walks or runs on the country roads, and wow, we are ready for some real roads now, ha!

Back to the story... So I decided to go out of my comfort zone and take Owen to 2 different places while feeding... thanks to #1 and #2. I still had to do the unhooking and unloading but once he was in the BOB I was happy to push him through the nursery and peruse the plants available for Mothers day. (Just can't blog "real time" anymore). We enjoyed the fresh air, and spent a little time there. Now I was getting hungry and had already planned on a bakery lunch. Yes the dietitian in me knows that this is something that just should never be done. But the dietitian in me also knows that 'never' in a diet doesn't exist, and these things sure are fun to do. So Owen and I crossed over the street and made our way to the bakery. If you are curious, it is called Anza Gluten Free bakery. I made my cinnamon roll selection, and was good to go. Owen and I were sure proud of ourselves. If only there was a grocery store that we could walk to we could really get some stuff done! I parked the BOB by the truck, and stopped his feed to unhook him from it to put him back into his carseat. In the process of doing this something set Owen off into a gagging fit, and I was reaching for the nearest burpcloth. These are a dime a dozen in our household, and there were many ready for action. I sat in the back seat of the truck, in the parking lot, holding Owen, and trying to talk him down. It was too late. He was gagging and having his mucous up then a vomit. They have been a little more forceful lately, but as I was making that mental note, the tube started coming out of his nose-inches- as he was gagging. I pushed it back in with the burp cloth, but I hadn't had time to sanitize my hands to get a grab on it. With his next gag it came out all the way to the number 8cm. For a reference, to make it down into his stomach, it is at 34cm down. At that point I figured that the tube was probably hanging in the back of his throat and just pulled it all the way out. His feed was almost done anyway, and his meds weren't due for another 2 hours. I loaded him into his seat, buckled him in, and he fell asleep, exhausted from all of the gagging. Didn't have to re-hook him back up that time... Cruising home, with him asleep tubeless in the back, and me noshing on my scrumptious cinnimon roll, I couldn't help but be a little sad. I felt myself getting in a little "I wish" conversation with myself... These are very dangerous if you have ever had them. I find them helpful if the conversations are kept very, very short. Allow yourself to vent, say what you wish, and then allow that to pass and be glad for and love what you have. So in this brief conversation with myself, I wished, so much, to not have Owen gag and vomit repeatedly daily, and to not have to place an ng tube on him, and for him to not feel any of these traumas. But these are real, and these are his and our normal now, as much as we have wished for "normal," this is our own normal. Our tiredness of Owen's gags and vomits with each sneeze or cough, or in bed, waking him up, stems from how hard it is on him. This train of thought screeched to a stop when I picked up the mail on the way home and had a lovely surprise from Aunt Syl and Uncle Doug. The tears of happiness came forth and I became glad for what was coming next. Yes, it was replacing the ng tube. But before that, I got to snuggle and dance and cuddle with Owen. Not once did I have to worry about where the tube was, if it was caught on anything, or if it was open or closed. We usually have to put the tube back in fairly quickly after it is out due to needing to give him meds or a meal, so it was such a special time, a carefree time. It was just him and I on the deck, laughing, and enjoying the sunshine. It was one of my favorite times which may otherwise not have happened. I also took some of the best pictures EVER with or without the tube. Here are some of my favorites.

Garden 2011

I got to thinking the other day that my last garden blog was one with a pile of dirt?! I was lazy and didn't go back to check but I am pretty sure... Here is an update with what we did before we went to SF...I picked and we ate all of the carrots that I grew in the raised bed up at the house. 1 seed packet= 10 pounds of carrots easy. MMM! I ate eating some of the greens and giving some to our chickens.
Chard and asparagus
More rows for weed control..
The beginnings of plastic weed control...

Family Day

The day of Mary's (aka Granny's) memorial was beautiful. It was a warm one, last week. Jim lead the service, and did a perfect job. He made us cry and laugh, which was just right. Family gathered at our home afterwards, which was extra special. Owen hadn't met his Aunt Shari, Uncle Josh, or cousin Mat, so this was a happy outcome out of the situation.
Na-Na with the two grandkids.
Blue even came around for a family shot!
Pa-Pa and his boys.
This was the best pic of the boys- Owen kept trying to grab Mat's ears, arm, anything!
See!
Owen was given a very special gift of mickey mouse eats with his name on them!
Love this boy so much. My heart hurts that we can't see him more often.
Chris and Mat walking back up the hill after a zip ride.
Looking so handsome! Cutest 3 year old boy I've seen!
Loved seeing the fam, sorry it had to be for a good-bye. The day couldn't have been more gorgeous, and that made it even more special remembering a wonderful woman.

Remembering Mary

Been meaning to blog this for a loooong time....

Chris's grandmother passed away when we were in the hospital. Mary, Chris's Dad's mom, had been not doing well recently, and she passed away with family near in Arizona. She was an active community member here in Placerville in her day, and she moved with the Brittons when they went to AZ. Mary was such a sweet heart, and would always speak her truth. She loved her family so very very much, and we will miss her so. The graveside service is tomorrow and we are housing a small family get together tomorrow afterwards. Although it isn't for a happy reason, we are sure looking forward to seeing our nephew Mat, and Auntie Shari and Uncle Josh get to meet Owen as well. The whole Britton side hasn't been together since January 2010 when we went down to Havasu for a belated Christmas. We will miss you very much, Mary.

A quick posting this morning....

Owen is doing well, had our follow-up cardiology appointment and EKG on friday. Sats were even up to 78%! We will take a C+ for SURE!! His c diff is doing ok, the hives are still itching, and the benedryl is still on board to help keep him comfortable. He is also getting more teeth, had an additional snaggler pop through yesterday. (Has 2 incisiors on the top, no front teeth:)) He is doing very well, going against the no tummy time rules and reaching like crazy for everything in sight. Even had his first wave yesterday to Aunt Court! We have been well fed between the Aubins, Bowens, Langfords, and Fusons. Blue was also returned to us by Kim and Austin, and Owen was so happy to see her. Have I said before how LUCKY we are for all of the LOVE in our lives? Just had to say it again. We are still unpacking and laundering around here, as well as catching up on sleep. The laundry is at an all time high due to Owen's poo issues, needing twice daily baths, washing whatever chair he is sitting in, and usually at least 4 outfit changes. Signing off from home sweet home!