Tag Archive | genetic testing

A Follow Up to the Birthday Party

I did not think to mention this in the birthday party post but this party was a wrapping paper free party! The gifts came in gift bags, cloth bags and from Victoria, a lovely piece of purple fabric but no wrapping paper! The tissue paper and bags are going to come in handy, not only with the giving of other gifts but scrapbooking and craft making! First time ever for this family that a major gift giving occasion has NOT resulted in garbage bags of paper material garbage! 

All reusable packaging!

Our Monday was a lot calmer in comparison to the previous day but the kids certainly were NOT calm and collected. Of course with the added knowledge that Nana and Baba are leaving the next day their behaviour was accordingly less under control. Poor Trinity had gotten bitten on the face multiple times over the weekend by mosquitoes so we had some medicating to do as well as a trip to a pharmacy for cream and witch hazel. Thankfully the allergy medication takes down the swelling quite quickly.

Poor buggy gir

Nana and Baba took the 4 big kids out for a lengthy grocery store run. Rainy days always put a crimp in the run the kids ragged scheme. BUT it allowed me a nice long bath, Echo a lengthy nap and Ken quiet time to work. 

They came back with a whole variety of fruit for fruit salad, including something new… Lychee fruit. So the twins spent some time examining it, peeling it, tasting it with Nana. Then I looked it up on Wikipediaand we read some of that. Of course it had to be planted in our backyard… just to try and then draw and write about it for our Summer Adventure file. 

Checking out the fruit

For the file

I made up a stacked bow (I know I know ANOTHER one) for our niece Gabriella using some of the pretty purple ribbon I got on sale (the one with the peace signs).

A gift bow

Since it was mucky out after rain there was time for the kids to drive us bonkers with balloons and playing with Echo’s new toys. We did try to get a good Nana, Baba and family picture. What do you think?

Just the girls

With all 5 grandkids

Oh and in the mail today – Echo’s new leggings bought off of eBay from Hong Kong… too big right now but I wanted them for the winter and they were a great price! 

New leggings

It has been a rather GOOD day for me all round actually with the sale of 3 of my Kijiji ads! Which means tonight and tomorrow I am committed to posting at least 4 or more to replace them. I am coming to the end of my books that are slated for selling and have to move onto the baby clothes. Ken has gotten a promise out of me to sell ALL of the boys’ clothing and my maternity wear. I just have to figure out what is a fair price. 

We have really hit kid busy time overload… too much excitement, too much out of the regular things going on. Poor Emanuel has been a mess and Trinity equally so with her added bug bites. Even Zander and Gavin have had their share of time outs and stern talking to. BUT there have been lovely moments with Nana and Baba all the same. I think we are all going to be sad to see them go home tomorrow. Their flight is around noon so they have to leave rather early in the morning tomorrow. 

The rest of our week will probably be spent at home. I have a bunch of reorganizing to do, Nana and Baba bought us a new microwave and I lost a portion of my counter space in the kitchen that has to be dealt with. We REALLY need a microwave stand… And then there is all the bags and such that were just chucked into the pantry due to time restraint. OH and all of Echo’s new things! But that is the fun cleaning! In all actuality, most of this week will be spent trying NOT to think about NEXT week. After all, Monday IS Echo’s genetic test and I am not sure if I mentioned this or not but the specialist paediatrician also wants to schedule a kidney ultra sound to rule anything connected to that out. That is basically what everything is now – ruling stuff out… no fun. We are basically sitting here doing everything to prove nothing is wrong. At least putting it that way feels better than ruling out or see what IS wrong. All in the mind isn’t it? 

We ended our evening with a video call on MSN with Quinn and Bree and a cameo from Scott… so Echo got to see two of her godparents and Trinity her birthday buddy. What a great way to end the day! 

And now it is time for the last hours before bed with Ken’s folks, some tidying AND of course laundry… two entries in one day… as Esther would say – FABULOUS! 

Some quiet time to end the day with Nana and the iPad

Adventures, Medical Education and So So Much MORE

Three days in one once again… the day just zipped away Tuesday and Ken got in a long day with work so we didn’t have supper until past 9 and the kids almost 8. I spent a nice chunk of my time fiddling with the new camera and comparing it to the limping predecessors… final reaction – I have a ways to go when it comes to settings but I am already enjoying it.

Sunny room with active kids

Not so good of me but the baby is cute

Each of the twins chose either math (Gavin) or sight words (Zander) and did a days’ worth of work before being cut free. I am hoping to start up with more activities shortly. 

Math time

The weather certainly helped along the wish to do some school stuff – pouring rain. So either hot or rain… which means MORE mosquitoes… ugh.

Sudden downpour that actually flooded one of the malls and their parking lot!

I have started work back up on the stocking for our god-daughter Anna. The hope is to complete it before August, the cross stitch portion at least. I still need to hunt down fabric for backing (carefully checking for colour fastness!). It is fun to do something so completely different in a stocking from the norm. I have to say I do harbour a wish that maybe someone will commission another for a little girl somewhere else… it could be a fun repeat! 

Not the best picture... this fabric IS white

It is a good feeling – stitching again. I have missed it. I have a few other ideas if we can find the time to design… IF. But enough about that… now onto what I am SURE everyone is wondering about – Echo’s cardiologist and specialist paediatrician…

Well we got out the door HERE at 6:30 am or so with 4 cranky and tired big kids… we made it to the city and then the hospital with little or no fuss after a brief stop to get gas and breaky at McD’s… that got us to the first appointment right on time. That was her specialist paediatrician Dr Lee… we didn’t have to wait too long (and with a 9am appointment not a huge surprise) but that was made very simple with the children’s computer available for play… though LEAVING the computer was a bit of an issue. 

Rather a cool set up! There were a few options to play.

The actual patient

Of course I had crayons and paper (remember over thinking mommy)… which helped with the wait in the actual examining room.

Trinity most likely drawing more o's

There was a student doctor at our appointment, a nice man who examined Echo first. Our doctor was very happy with everything… but her weight of course. Again the in proportion but not the right size issue reappears. She gave us a requisition for some more bloodwork that will be done when we go in in August for her genetic testing, absolutely no rush just wanting to get rid of any and all possibilities. This was along with a needed urine sample where Miss Echo was MOST accommodating. As the nurse was showing me how to put the bag on to catch the pee (not easy with a girl I tell you!) she peed and the nurse caught enough for the test (thank goodness I did NOT want to be responsible for that little job later). They are planning on testing for potassium as she still had a smidge bit high on the retake and then testing regarding kidney if necessary… but the doctor was happy and felt we shouldn’t worry… but find ourselves a local paediatrician and go from there. YAY. 

They directed us to the cardiologist and off we went. We got there right at 10 (our appointment time) and here is where the massive wait started. Honestly if I had thought it really WAS going to take 4 hours I would have brought in snacks… BUT they did have tv (YTV station) for the kids which helped… and a bathroom we could use. 

Waiting waiting waiting

First was ANOTHER ECG test. That wasn’t too bad, but when they tried to take her blood pressure she FREAKED so they just wrote that she was upset. Thankfully her SAT was great – 100 so she is getting plenty of oxygen. Then after that test we went BACK to the waiting room to… well… wait. Next came the Echocardiogram… (ok I DID giggle that Echo was getting an ECHO… so did the nurse actually). They had a video player (that played VHS of all things!) there so the kids picked out a Diego movie to watch while they did the process. She did pretty well for most of it, we bribed her with binky, cookie AND Petite Sheepette (who was along for the ride). She did play around with the wand they use to do the scan and at times tried to get it to a different location but the staff at the hospital is amazing and calm so it is always easier to do stuff there. I absolutely ADORE the people at the Stollery… we donate there when we can… and would love it if other people did too! 

Where was I… ok after her Echo Echo and family headed BACK to the waiting room and by then the kids wanted to GO HOME. Of course the plan was to head to H&W AFTER to get fruits and veg so no food still. Then they put us into the examination room saying the doctor would be there shortly… apparently SHORTLY is like 45 min! Which left Ken and myself one step closer to madness after that stint in the small toyless (except for what we brought) room. I swear both of us were exhausted to the point of curling up on the floor almost to nap! 

Checking out all the stuff that never touched her!

Eventually the doctor came in… he was a rather good looking Asian man with an AUSTRALIAN accent… he had forgotten his stethoscope and when he left to get it Ken and I had to giggle. Anyway he came in and was very happy with how Echo looked (again beyond the weight), checked her out (with fore mentioned stethoscope) and then got down to the nitty gritty where he drew us this little picture below…

So the extra ventricle is top centre, the two options are on the left and lots of other fun stuff...

and then walked us through what she has – Patent Ductus Arteriosus or PDA of all things. Basically her extra ventricle STARTED to close up (the one that bypasses blood when you are in the womb and not using your lungs) and then didn’t so her left side of her heart is working harder and slightly swollen… not life threatening but not something you want to leave. There are TWO options to deal with it – an incision in the side (scar ick) where they tie off the extra ventricle and not the one the doctor wants done, or through a vein in the leg with a catheter thing that is the better option (like no scarring and not overly invasive). They leave a piece of metal in there that either is like a spring with prickly things that makes the blood clot there and close it off OR a metal piece with a shape memory that when released would go back into shape and close it off (the little drawing on the right UNDER the spring on the above picture). Either way she will have to go back to the cardiologist once a year or so for the rest of her life as they would want to check up on it (no biggy) and best of all – only in the hospital 24 hours! So relatively easy on baby AND easy on mom… as I get to stay there with her (not during surgery of course). 

So while it is not what we hoped for best case (same thing as Emanuel VSD and not requiring surgery) it is far from the worst (open heart OMG dying). I feel oddly ok about it… it is not rush rush and actually they may want to wait just for her to grow some (she is a whopping 12lbs 9.5 oz or so… good for her not great for most anyone else)… so when we asked if it was awful to NOT have it done in August (wedding, birthday party – hers AND in-law visit – first in almost a year due to Baba’s medical concerns)  the doctor was just fine about it. In fact, now we wait on their call and he left a note for NOT August. We go back to see HIM in 6 months regardless, and do the whole series again, this time WITH snacks! 

So we made it through in one piece and on the way out the door were complimented on our children’s behaviour (WOW) and each of the kids was offered a sweet. In fact they also got a lollipop after the Echocardiograph, which is funny because all those 4 did was sit there and watch tv.

Petite Sheepette with the lollipop... not sure if they were sharing with her or not

So we packed everyone up, paid our parking and headed over to the old place to collect mail (still not sure why the forwarding is screwed up) and then to the bank (government cheques to cash), H&M (nummy food for GREAT price) and then drive through (late lunch) and then… and then… well Ken had some nasty swear words to say and the van smoked in reply and OVERHEATED! Thus the beginning of the next great Reinsch-Johnson vehicle related adventure (though not the words KEN would have used).

Soooo we get onto the bridge that has been under construction for like TWO years to get to the south end of the city and smoke starts to come from the hood… Ken turns on the heater to try and cool down the engine and smoke comes in the van! ACK! We couldn’t just pull off on the bridge so had to CAREFULLY drive to the nature centre/fort parking lots… while being behind almost every slow and crazy drive in the city I swear! Thankfully we got to the parking lot and pulled the kids out of the van… Ken then opened the hood to peek in and see coolant coming from a DIFFERENT place this time… so we took the kids on a walk on the side walk (so many mosquitoes so no grass and lots of our bug repellent lotion that seems to be working), fed the baby her cereal (yay for buying that BEFORE hitting the hospital) and generally sat for a bit while the van with hood up cooled as much as we could in the warmth of the day.

Looking for sticks, bugs, leaves, you name it in the sun

After that adventure we got back in the van to return to the middle of the city to try and gingerly get to the Canadian Tire that did the previous coolant repair and possibly did mess up (we didn’t know at that point)… we made it… well MOST of the way before and awful sound and smoke so we pulled into a residential area and turned everything off… now comes the AMAZING part of the adventure…

We stopped right across from a house that had a FOUNTAIN Tire truck in front of it AND a man wearing a workshirt from there coming out of it. When he noticed us stopping and sitting there he came over to help. His mother-in-law lent us a phone to call AMA (again no cell phone yet…) and then he had to leave but said he would be back in 15 min to lend us a phone again and help out.

So Ken took a little walk while waiting for the tow (projected to be an hour) to try and get internet on the netbook and get ahold of someone on the online chat (IRC) that the guys use daily with no luck. That is when the wife of the OWNER of the Fountain Tire (the man previous) came across the street to offer further assistance. And this is where it gets amazing!

She came over with their house phone and an offer to let our kids play in their backyard, to have snacks and simply wait for our ride. Talk about life saver… so we unpacked everyone and cleared out the van onto their front porch and went into the backyard where their 2 days away from 7yrs old son Christopher was bored and wishing for playmates. And thank goodness she did!

Our ride to a place to crash overnight was Alan (of the den Otters) who BUSED to work and was currently on the bus AWAY from us to home. He actually works about 3 blocks from where we were stranded. He and Xinny are the ONLY people we know who have a big enough vehicle for all of our family and one of them to drive (they have an Odessy). AND to top it off she had wireless internet Ken could use as I only had two numbers with me – the new home number for Chris and Chris (the wrong direction from where we needed to be) and Xinny’s cell phone. So Ken was able to get onto IRC and chat with the guys, call Xinny and then Alan and call Canadian Tire to make sure we got everything sorted.

It took hours to sort everything out and get Alan turned around. The kids had fun, had a washroom to use, a new playmate and later SNACKS and we had a lovely visit with the wife and a chance to let Echo out to stretch and be cooed over. On top of that THEIR son also has a weight issue that is unresolved but not hurting him so we could commiserate together. It was so wonderful to have to have that news in the morning and then talk to someone who is dealing with a similar situation and able to share and understand.

We had a bloody nose (Gavin spontaneous) and a poopy diaper (Trinity) and tired kids but they had FUN, in fact they didn’t want to go. So it was like an adventure for them. Something positive and exciting.

Playing with their new friend

Alan got to the house with little or no trouble only to realize he had not added his 8th seat so we called SEAN who has a truck. Even before Alan got there the husband returned and in celebration of a friend’s deal had some wine with Ken and more chatting and sharing of funny stories. While waiting for Sean Alan was offered a drink (non alcoholic as he hadn’t eaten in AGES and had to drive) and was brought in on the fun. Really this was the most amazing and positive way to be stranded WITHOUT a phone we have EVER had!

With Sean getting there and saying good bye to the most wonderful strangers we have EVER met we were on our way to the NEXT adventure – a night at the den Otter house. The kids were sad to leave the new friend but excited to see Isabella and Alexander. It was already pushing 8pm when we got there so not much play time before bed (the boys and Trinity in Alex’s room, Ken and myself with Echo in Isabella’s with the two in the basement cooler room with their grandma). BUT Sean stayed to hang out (been ages) and I had a lovely visit with Xinny and Izaac who is one of the cutest not so little babies EVER.

Meeting of the minds?

I crashed early (for me) at around 11pm as the night before I had gotten only around 4 hours of sleep. Ken stayed up to work (thank goodness he can work from anywhere with an internet connection). He had already called Canadian Tire to ensure they had the van and push them to look at it ASAP. It was nice to hang out with the guys again for Ken. We have missed them here over an hour away.

In the morning it was play play play and PANCAKES for breaky. We had until 11 am with all the kids running around, babies included. Then Xinny had to take Isabella with Izaac in tow to piano lessons. So the boys, Trinity and I kept Alex company while Echo had a nap. And then Xinny took Isabella for skating while Ken called Canadian Tire, confirmed its repair and left with her to get our van. In the meantime Xinny’s VERY sweet dad made the kids noodles (they were AMAZED by his chopsticks) and Ken and myself absolutely yummy sandwiches that Trinity and Echo stole pieces of. I love Xinny’s parents. They do not speak  the best English but they are the absolute nicest people and totally kid people.

Playing in the sunshine... indoors

We left their place around 2 or 3 I think and headed home with a van that was driving rather well and managed to drive rather well all the way home. Canadian Tire was very kind with the bill ending up charging us only 120.00 (we figure that is cuz they cannot be sure if it was a missed issue or their error as all they charged us for labour wise was diagnostic). Small price to pay compared to any time the previous and way newer van was repaired!

Come on tell me this isn't one of the CUTEST baby pics !!!

... and another

We got home worn out but victorious… we met kind people (Ken and I are brainstorming a cross stitch to mail to them), learned about our Echo and that even with this issue she is still basically a medical mystery, brought home yummy fruit and veg AND had a whole series of major and minor adventures. As it is for the next two days I am not going far from home… I simply DON’T want to!

Tonight Ken has Jeff over – he has moved to California years ago and is back up visiting family! So he has spent his evening with a beer, online gaming and a good friend. Perfect way to wind down after a VERY stressful two days. We want to drive the van some more before we finalize plans to pick up my nephew for a few days, I have to  get to Michaels with a coupon for Echo AND for the August wedding decorations… Ken has work to catch up on, I have housework to catch up on and the boys have to get back to their schooling… it never stops but we do make it fun, er, interesting. So for the rest of tonight I am going to curl up and play with my camera or sew or something but one thing I am NOT going to do is worry about Echo’s unscheduled as of yet surgery… and you know what? For once the worrying Lisa Mommy may just do that. The Stollery is the BEST hospital in at least Western Canada and I have faith in the people there. If they say it will go well IT WILL! There I think I have spilled it all… hopefully everyone has not walked away half way through bored to tears!!!!

Our medical mystery... or is it miracle? She has absolutely none of the negative symptoms of anything, nothing slows her down and she is perfect for our family. I couldn't ask for a more amazing baby to finish our family with!

This entry was posted on 21/07/2011, in Uncategorized. 2 Comments

Is it Wednesday Already?

Was everyone ELSE aware that Alberta had a rainy season? Because it is REALLY starting (ok it DOES) to feel like we do. I have it on good authority that other provinces and some states are having the same weather. So much flooding, even back where we used to live. This is something the kids are VERY unimpressed with. Last night it was a lightning storm with thunder to boot. Thankfully the kids slept through it. Ken loves this weather – says it reminds him of living in Minnesota… the rest of us not so much.

POURING rain

We got a call today… our genetic appointment is MADE! Apparently the bloodwork we did back beginning June was NOT including genetic. They have gotten nothing from those tests. Instead we head back to the city on the 22nd of August and do the bloodwork AND appointment at the same time? Odd. And this is where I got the chuckle – they are SENDING me a confirmation sheet with the information AND the directions to their office… ummm through the post?? Seriously? So if I don’t get the paper by July I plan on calling for a resend. But this is a good thing, we have progression… and then we go from there (and she will be one by then too!!!).

Bitty baby

Today has been an odd middle of the week for us, no Ken (he was out of the house before 4:30 to drive Karyn to the airport and then on to the old place), SUNSHINE and a boatload of tidying still to be done. So I made the executive decision to cut the homeschooling down to nothing. BUT when Echo woke up this morning I DID find the box with my slate in it! AND the lunch bucket.

Slate and pencil

Lunch bucket

Gavin was especially enamoured and chose to play with it over going outside in the morning after breakfast.

Gavin and his drawing

We actually had substantial sunshine  today, but the kids were not overly thrilled with the idea of playing outside. I think we are all a little burned out with all the change and upset. We are still trying to find our normal again, it is coming but definitely not a quick thing. I think we REALLY need to put up curtains… I know it would help with naptime immensely.

Posing outside

I am pretty sure we have a birthday party date for our littlest Reinsch-Johnson – August 14th (the Sunday). Grandma works on the Saturday… So now I have to get the word out and see if we have enough people who CAN make it. I already have a good idea how I want to decorate (purple and black in honour of being born on Friday the 13th) and her outfit – a tulle dress I plan on making myself. So mark your calendars local peoples!

Play Doh is a life saver I say. The kids wanted to make something at the “big table” while Zander worked on computer fun. Small doses of outside time interspersed.

At the big table

Computer fun

I am just itching to be DONE with the unpacking at this point. I wish I could just go go go and be done… or at the very least done the public areas. Too bad that means I need to get to the closet we can only access in our bedroom. I am at a loss as to what to do with our sub woofer and speakers, still working and Ken brought those up with him over 11 years ago but not hooked up in ages. I have sorted out most of the toys into the family room closet, not the neatest job but at least they are together. The next step is to remove those storage direct items (and the speakers of course). The end is in sight!

It has been a long day all round. I have to say I am glad to see the evening and have a bit of a break from how busy it is with so many kids running wild. Well slightly tame but running all the same. My birthday is on Friday so I am hoping to get to the end of the week with at least a small smile on my face… it is not every day you turn 32!

BAGEL

This entry was posted on 22/06/2011, in Uncategorized. 2 Comments