Thank God it is Monday

Not a normal post title for me at least because I love weekends especially in the summer. Lots of time outside, swimming, going out to eat - all the things I did not get to do this weekend. Even though I was able to escape for a Mothers Morning Out breakfast with my DS mom's group and a bit of unsuccessful shopping on Sat AM, I still was counting the hours until I got to leave for work this morning thats to our awesome babysitter and her mom which are not scared of germs.  Both girls are sick - and that is not a good combination. To give you a hit of my fun without grossing you out, I changed sheets between the two girls 6 times from Friday Night to Sunday Morning. The weirdest part of all this is that both girls are sick at the same time and they have been sick forever. Lucy started with a stomach virus 10 days ago. It is a weird periodic sickness - during the day she is fine except for an extra trip to the potty here and there. Then every couple nights she has an episode of one kind or another that results in me changing her sheets. Last night she had an urgent potty trip and threw up 3 times, but during the day yesterday she was perfectly happy with so much energy I couldn't even get her to take a nap. Cate started with a suspected viral cold on July 19th that has persisted through a trip to the pulmonologist, breathing treatments and steroids. It is also really weird because 85% of the time she is fine - her normal social, spunky self - then randomly she'll start coughing so hard a couple times it has made her throw up. Then of course she acquired the stomach virus symptoms on Saturday AM to add to her coughing battle. So basically we've been up with one of them every night for the last week and I'm about out of laundry detergent. I did take both girls to the doctor today and he confirms it is most likely your typical stomach virus that Lucy gave to Cate.

As for Cate's cough, it might be developing into something more in her chest so she gets to start antibiotics. Normally I would push back about antibiotics for something we can't diagnose and the fact it could make the stomach symptoms worse but at this point with Cate I'm desperate since school starts on Thursday. So cross your fingers for me that the antibiotic works and works quickly.
So given all of that we spent the weekend in the house, no trips to Target for school supplies, no eating out, no swimming.  Not fun at all and to add to that we've been on a bland diet.  Everything we ate all weekend was white or yellow - blahhhhh.  Monday seems like a good thing today since I haven't had to clean up any messes and got to eat a nice big roast beef sandwich with horseradish mayo & cheese - yummmm!!! 
The only good things about the weekend is the amount of laundry done I got done & put away and that I got my monster toy room closet renovation finished - (it only took two months):

The toys were very cooperative during their photo shoot and the printer gave up enough ink to make excellent stickers.  So far the girls are following the new rule of take it out, play, then return the box to the closet - we'll see how long that lasts. 

The girls and I did have some small sparks of fun.  We played a couple games (Cate is a champion matching game player) and did puzzles together for the first time in a while and Lucy even did one by herself - she was so proud, she made me come down from upstairs to see & take a picture.

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And yes she is still her PJs at 4:00 in the afternoon.  It was a PJ kind of weekend.

I hope things will turn around soon and that I can stop cleaning the light switches and door knobs every 5 minutes!  It is a big week - Lucy's open house at pre-school is tonight (grandma is keeping the sickys) and she should start the 3s class tomorrow, Cate's open house is Weds morning and she should start 1st grade on Thursday.  I need these girls up to it so send us some good thoughts - PLEASE! 

Annual DS Clinic Visit

Today was Cate's annual visit to see Dr. V, a pediatrician who specializes in genetic conditions, at the Down Syndrome Clinic.  There is a big debate on the DS BC message board about the value of DS Clinic or geneticist visits.  I think that just like most things in the special needs parenting world - the value of a clinic visit depends completely on the doctors and team at the clinic.  Our DS Clinic is an excellent resource for so many issues from medical to developmental or educational.   One of the reasons we never miss our annual visit (we've been taking Cate once a years since she was 3 months old.) was a situation that happened when Cate was 2 years old.  During the year Cate was two she had pneumonia three times - never bad enough to hospitalize her but enough to give me gray hair and keep her up many nights.  After the third diagnosis, when the immediate care doctors and our excellent pediatric an had no insights on how to prevent it, I emailed Dr. V.  She immediately responded that we need to take Cate to a particular pulmonologist.  I had never even heard the of a pulmonologist before that email.  So we made our appointment, saw the doctor who diagnosed RAD (Reactive Airway Disease) which is a condition that causes lungs to overreact to viruses or bacteria making it harder for the lungs to clear and results in secondary infections like pneumonia.  It is a condition that most kids grow out of and is not surprising given the small size of Cate's breathing passages.  It was such a relief to have a name to put to this issue but even better then that, he had a treatment plan that was preventative.  Cate didn't have any more cases of pneumonia or even bronchitis.  Sometimes it just takes the right person to make the difference in Cate's care.  Dr. V is one of those people, she has experience and knowledge that I cannot expect from a pediatrician who sees a handful of children with DS in his career. 

At our annual visit to the  DS Clinic we do a few different things - first they do weight, height, blood pressure and listen to the heart to check general health just like a pediatrician can do but the difference is at this clinic they only use the DS grow charts. They know what to expect the curve to look like and are more likely to see a potential nutrition or BMI issue in a child with DS just because of their experience.  Cate was following a perfect curve and Dr. V has no concerns about her weight.
After that we sit down with Dr V to discuss Cate's progress at school, what therapy visits she has, what health issues she had in the last year and any concerns we have about her health or behavior.  In the past this discussion has lead us to change our therapy structure, she was even the one who suggested aqua therapy for Cate - so we have her to thank for Cate's early start in the pool.  Dr. V was very impressed with Cate's speech, not just the general clarity but her sentence structure and vocabulary too.  Cate asked me if she could have the iPad and Dr. V told me to let her have it.  She was also impressed with Cate's ability to maneuver it and the time she focused on a single game.  Her words - "Cate is very smart".    She agreed that Cate's school situation, her social growth and developmental progress are all perfect and that opinion was with Cate being anti-social and stubborn.  She refused to talk directly to the doctor instead pointing to me when she was asked a question and when the question persisted at her turned to me to say the answer.  She never smiled or showed off her fun personality.  I asked Dr. V about some nutritional supplements that are becoming popular in the DS community with claims they help improve speech and attention span.  She is not a proponent because no studies have been done on the physiological risks and there isn't a prescribed list of lab work that can be done to monitor any possible issues like the liver enzyme test commonly done with some medications.  The only concern of mine and Ric's that we discussed is Cate compulsive like behaviors of chewing her finger nails or cuticles and its predecessor, picking at scabs.  Dr. V did a sensory evaluation and based on that review is not concerned at all at this point.  She thinks it is just a phase that she will grow out of and she probably does it out of boredom more than as a coping mechanism.  So her recommendation is tell her to stop without making a big deal out of it, then to redirect her to a new activity is she continues and we'll look at it again next year.    The only other piece of advice she had for us was to start working on Cate's self confidence.  She says this is the age when that becomes so important for children with Down Syndrome.  Dr V suggest finding an activity Cate is good at and fostering that - her example swimming and being on a team then training for the Special Olympics.  Which of course is a perfect plan for Cate.

The next phase of our visit is a consultation with the DS Clinic education specialist.  She reviews Cate's IEP prior to talking to us then discussed our concerns and questions.  Since I didn't have any, it was a short meeting.  She told me this was one of the best IEPs she had seen for Cate's age.  She thought the goals were appropriate, well written and provided excellent measurements.

Then we headed to do Cate's blood work.  Children with DS have a very high probability of having thyroid issues so we do annual blood work to watch for them.  This part of the visit was unsuccessful in that we didn't get the blood, it was emotionally trying because although Cate keep saying "I'll be brave" she also freaked out at every new action of the very nice technician, and for me it was very wet (note to self take children to potty before having them sit on your lap while getting stuck with a needle).  We now have a lab order to take somewhere else when it is better for Cate and when I have a change of clothes handy.

Except for our little accident, the visit was great.  Very reaffirming that we are on the right track.  Maybe some people don't need to drive 30 minutes to see a doctor that just tells them we are doing everything right and that Cate is awesome but I do.  I helps my self confidence and gives me security that I have a resource if anything changes.   Sometimes I just need that, so that on those days when I don't feel like I am doing anything right and that I don't have a clue how to care for Cate's needs, I can remember a very educated person told me that I was doing everything right and she was very impressed!

getting bigger!  grew almost 2 inches since the end of PreK

Wordless Wednesday - Sugar Rush

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luckily there is no dairy in a big birthday party favor sucker because I don't think she'd have accepted me taking it from her

Quotes of the summer

Driving down the road after seeing a person advertising for a yogurt store:
Lucy: "Mommy I want to be an ice cream cone when I grow up. A chocolate ice cream cone."
mmm OK??

Driving home from swimming:
Me:  "I just talked to daddy and we are going to Wendy's for dinner"
Cate:  "Yeah, are we picking him up?"
Me:  "No he is meeting us there"
Lucy:  "Is he driving in our car or his?"
Me:  "His, he is meeting us there"
Lucy:  "OK, I'm going to relax until we get there"
Me:  "Good idea Lucy"
Lucy:  "I'm going take a chill out break"  (guess I've been saying "chill out" a little too much lately-the 80s girl in me coming out)

Driving home from camp:
Cate & Lucy - mommy mommy mommy mommy - for sorts of reasons
Me: Turn on the book on CD and both kids are silent for 5 minutes
Lucy:  "Mommy?"
Me:  "WHAT"  (ok maybe a little too much frustration sneaks out)
Lucy:  "But I only said Mommy once"

Walking back to our car after the July 4th parade:
Cate:  "I want to watch TV until Uncle Lane gets here"
Lucy:  "Cate first of all, we have to get to the car"  (good point Lucy - but "first of all" from a 3 yr old?)

Getting ready to take a shower after spending the afternoon in the pool:
Lucy:  "Mom I'm hydrated"
Me:  "What honey??"
Lucy:  "I'm very hydrated and thats good"
Me:  "You are hydrated???"  (still having trouble believing my 3 year old is using that word)
Lucy:  "Yes - It was very sunny today but I spent all day in the water so I'm very hydrated"
After the fact Ric told me they had a converstation the day before on why it was important to drink water on a hot day.

A real tomato!!!

Phase 3 of our back yard redo that I talked about here a couple weeks ago is going to be a kitchen garden in the same spot our potted tomatoes are now.  Hopefully that work will begin in the fall so it is ready for my inexpert attempts at planting next spring.  I've seen it said many times in article and I tend to believe it - kids eat more when they help grow or pick out the veggies.  My girls are pretty good (well Cate is great & Lucy is coming along) veggie & fruit eaters normally but they always eat with no hesitation if they helped make the food.  Our tomato plantings from this spring are a trial run to see if they will take to the new garden idea and so far so good!  One of the pots definitely has "blossom end rot" but fingers crossed we haven't seen it on the other plants - yet.  We got our first eatable tomato & cucumber this weekend!  I made the mistake of actually picking the cucumber before I realized I needed it to be picked by little hands since we only had one good tomato to pick.  So in order to avoid the "I wanted to do it" tears, I fudged a little and "put" the cucumber back (I set it in the pot and wrapped a vine around it - viola!). 
The girls were so excited to pick their veggies and ate every bit of them fresh with no dressing!

both girls ran to the plants when I told them one was ready to pick

Cate found it first and was showing Lucy (please ignore her funny pants in 95 degrees but she was so itchy I had to put steroid cream on her legs and didn't want her getting all over)

our first little yummy tomato!

Cate does the honor of picking it

she is proud of her little tomato

Lucy "picks" the first cucumber

she is proud of her little cuc too!

running up to show daddy!

"hello - hello - this is my cucumber phone"

Pancakes! (dairy free, egg free pancakes for Lucy)

This weekend we had another little cooking lesson - pancakes.  Now these are not my mother's awesome homemade pancakes that takes like heaven but quickie Bisquick ones but the girls didn't care.  It was good for us to give up our weekly trip out for Sunday breakfast and have one around the kitchen table.  The girls poured in the measured ingredients and stirred the batters which they love doing. 
For ours I just followed the normal directions:
2 cups Bisquick
1 cup milk
2 eggs
Mix until blended, cook on hot griddle

For Lucy we did a little modification since dry Bisquick is a dairy free/egg free product we made a half batch with this modification:
1 cup Bisquick
1/2 cup Almond Milk
2.5 teaspoons Ground Flax seed, mixed with 3 Tablespoons Water (I cooked on low in microwave 45 seconds or until starts to gel)
Mix until blended, cook on hot griddle.

We also added some fresh blueberries to the pancakes once they were poured on the griddle.  They are not my favorite pancakes but I'm totally spoiled by my mom's version.  The girls loved them and ate at least two each.  Eating breakfast in your PJs is a great way to start off a Sunday!

My mermaid daughter

I know I'm repeating myself but I L.O.V.E. how well Cate swims!  Nothing holds Cate back in the water.  She has been taking periodic swim lessons over the summer to improve her front crawl, learn a true back crawl (not one underwater) and start on the new skill of breast stroke.  She is doing great on all of those (sad side note, her practice group for swim team can't find a local pool since theirs is closed for repairs this fall so maybe no swim team this fall :-().  But her true love right now is swimming underwater - just like her mommy!  She has always liked to dive for diving sticks but needed a little push to help her get going downward.  Then after a swim class a couple weeks ago it all clicked and she has it figured out.  She even retrieved a dive stick from at least 4 feet of water last weekend.  I do love my mermaid daughter!

really mom - more pictures?

ta da!