Wednesday, June 22, 2011

Lots on the go!

Sorry my friends that I have not blogged in a while, things have been alittle crazy & I have felt alittle run off my feet.

Since I wrote last we have done alot of things, it is crazy at how busy June as been for us. Since our Sicks Kids followup we have heard nothing regarding Belle's blood work so no news is a good news, they told us if there is anything they would call.. So that is good!
We attended an Annual ALS walk in Georgetown for a local GP & dear friend who was diagnosed 4 years ago which has been really sad as he is such a wonderful man & so is his family. It was great to see him & talk with him and to Thank him again as I will do forever,  as he brought my beautiful darlings into this world.  The turn out was amazing as always but the weather was really crappy and the walk ended up being cancelled.  We were able to spend time with some really good friends that weekend which was a really nice thing as we had not seen them for ages! Note to self, can't go long periods without seeing good friends.....

We had a lovely neighbour dinner in our "Backyards" which so great, lots of yummy food and great adult conversation. Can't wait till July's dinner these dinners are going to be so looked forward too. I am not sure what we are going to do in the winter months??  The next day after going to bed from that meal at 2:30am we made the trek to Niagara Falls where ate lunch at the Mandarin (  for those that know me, I have a thing with food under lights, just not seem very hygienic to me).. Then we ventured to the falls for the kids to take do the Ferris Wheel & a museum & spend some time with GGma as it was her birthday which is why we went our there in the first place.. She was super excited to see them as she always is, they bring such joy to her. She had a great time as did we, but we were exhausted when we headed home.


Laila turned 4 last week which was bittersweet, so we move from the "Terrible 3's" to the "Fearsome 4's" so I have been told.. Urgh, since she has turned 4 only a week ago man o man the ears are in complete shut off mode and the attitude is overwhelming.. I am really not looking forward to her 13th birthday...  But she is still super cute and such a cuddle bug~ She seems so grown up and since turning 4 she is looking forward to attending school this fall & I must say so am I... She is getting so bored being at home & I am running out of ideas to keep her entertained. To celebrate Laila's 4th birthday mommy put alot of time and energy into planning a party as I always do! I made the cake & all the food, planned a fun time for her & her friends.  Cake & Food are usually an out sourced thing so this time this party was a huge undertaking, I even made the Pinata!  We hired Monkeynastics that we purchased as a WagJag deal for 69.99 that was originally 198.99 and well that was crap let's just say we got our "WagJag" worth! LOL  I don't think I will ever purchase a Wagjag thing again.. You totally get what you pay for in most cases! Total garbage, I want them to call me for some feedback..  Laila had fun that is all that mattered & well Isabelle pissed the guy off by telling him she knows how to do things as she does this all the time at the Little Gym, I think he happy when she left and went to play... LMAO
Good thing I confirmed with them on the "loot bag" as they said they would provide for 12 kids.. A loot bag to them was considered a "Sticker"... LMAO! They said there would be a "Monkey" there but no monkey showed up! It was a really poor production I tell you! If I paid full price for that I would have been royally pissed!!

Cake was a huge success, it took a total of 8 hours to do but turned out amazing. Food was great and everyone had a great time. The kids toilet papered themselves, had silly string fights and spray painted their hair with coloured hairspray oh not to mention my Swingset! I think they had more fun with that then Monkeynastics! Backyard looked like frosh week but it got all cleaned up & you would never know there was a bunch of local trash monsters there,  the kids loved it!!  Laila had a great time and slept the next day till 9:30am which was GREAT! So another successful party for the books! Party planning is alot of work and you are completely exhausted when it is all done.. Did I mention that I am exhausted? LOL

Sunday was Father's day which was opened up with the kids sleeping till 9:30, yippy, I was sooo not ready to wake up at the crack of stupid on a Sunday to make breakfast after a wild week.. I got up when they did and started making breakfast, the girls gave daddy his gifts then off to Faery Fest at Riverside with the girls we went! We stopped at a local dollar store to find some wings then off we went as I was not about to pay 30 bucks for wings there. There was $10 Admission which was totally not worth it  travelling carnies!! LMAO Some very strange people there.. Everyone talked so weird & were carrying these little "Fairy Cats" on their shoulders that moved very odd.. We did not last too long as the kids were getting bored as were Tom and I so after they watched a really cheesy play we headed out for some Ice Cream! We finished the day off with a lovely dinner outside in the backyard eating Sushi. So I think the weekend was a good one.

All in all it has been a crazy month of June with lots to do! I feel exhausted and wore out in such a need of a Vacation. So we are planning a Road Trip in July which should be great, we are really looking forward to it.

Friday, June 3, 2011

Endocrine Checkup

Yesterday we had our 1 year followup appointment at Sick Kids Hospital here in Toronto. This appt always makes me really nervous because it is my little girl that is the patient of the Poking and Prodding! So to kick off our day we tried to make it as focused on the little ones as possible to make the experience not so scary for Princess Belle and to have my little June Bug Laila not feel left out as all the attention tends to be focused on Belle at these appointments.

We started the day off with a trip to Casa Loma in the big city and the kids thought that was just fantastic. I think Laila was alittle sad to see no Princess' but I told her that her and Belle were the Princess' in the castle for the day which tickled her Purple (Her favorite Colour).... LOL They explored the secret passages and took the long trex through the tunnels to the stables. It was a good day!  When we got the to the room where the servants slept Tom said to them would you rather be a Boss and sleep in a big room or a servant and sleep in the tiny room? Laila piped up and said I want to be the BOSS! Gotta love her... After a morning of Castle's and Chocolate we made the nervous journey for Belle to Sick Kids. She was very quiet as we pulled into the parking garage, she was not sure what to expect but we tried to calm her nerves as much as we could. We went to grab a bite to eat in the Atrium,  they filled their bellies with healthy choices Grilled Chicken, Salad ands Perogies. The girls made tons of wishes in the Atrium fountains clearing my wallet of all my change, then they asked Daddy for his change but all he had was the "Big Money" as they called it. After the all the wishing was done and bellies full, we headed to our appointment.

As we headed to Clinic 9 we  had to do a pit stop at the gift shop to take a boo at all that treasures. Belle got her heart stuck on yet another stuffy in the Gift Shop window, but we told her that if she did really good, he would be hers for the taking... So off we went, we followed the little foot prints to our clinic and checked in. The girls played and we were about to start crafts with the Staff Volunteer when we got called. Isabelle got weighed and measured, she went up 6 lbs since her last appt and went up a few inches as well.. When the Doctor came to see her, she became alittle nervous with him but he quickly got her warmed up and comfortable which is always helpful. Kids can totally sense when people are not sure about them, but thankfully all her Docs make her feel at ease which is a great thing  He talked to her asked her what she does for fun and activities, what her fave books are as well as movies.. She was super excited about to tell him all about her faves,  but still alittle nervous that he was going to take blood.. She would flip flop between Mommy & Daddy's lap to make things alittle less scary. He was very happy with her growth and said he would rather wait for the GH injections until age 8 or 10. They can be on GH injections for years with no breaks and he does not feel it is necessary at her age, there is still alot of growth potential when she is older.. That is okay with us and I am sure it is with Belle. She seemed to get quite relieved up until he mentioned the "Blood work" needs to be done... She stiffened up & her little heart started to race...  He also let us know that her bone age scan from last year on her hand showed that she was age 5 when she was actually 5 and a half, which tells us that she is really not all that far behind her peers! So the next appt is 1 year from now!

Laila stayed behind with the Staff Volunteer that she began the craft with earlier and was quite happy with that, they were awesome. We took Belle down to the Ambulatory Room to get the blood work done, they are testing her for Celiac, thyroid & some other routine stuff, this is all quite common for TS girls. I am sure that all is fine, but you still have that little bit of worry, but surprisingly I am okay about things at this point! After all she is being taken care of by the best as we promised ourselves we would do for her when it came to her TS.
She was quiet which was totally understandable, we talked to her and reassured her she was okay and we would keep her safe! Mommy and Daddy would never put you in harms way, she knew that and found great comfort in it. She told us, she was in the best place & they know what they are doing. They called her number which was 68 after about a 5 min wait and to our chair we went. She wanted to sit with Mommy which was totally fine with me I love her cuddles, I snuggled her & told her she would be okay Daddy & Mommy would be right here with her, we watched the Fox and the Hound & talked. The lady came in, she teared up alitlte as did I (But hid my face), she put her blankie (Aww, that she has had since birth) in her mouth & bit down, here we go!! I thought for sure I was going to have to pin her down with the help of Tom & 2 nurses & she would be screaming her eyes out as if they were peeling her skin & popping blood vessels in her neck.. (Wouldn't be the first time).... But totally not!! She blew me away, she never ceases to amaze me. She took a quite glance at the needle and the IV taking her blood , thought it was really cool then turned away...
 "All done" the nurse said, she filled up with tears of Joy and Happiness!! I did it Mommy, I did it Daddy. Now we can get my Tiger, we replied yes honey after we get Laila. She was soo proud,  as were Mommy & Daddy, we smothered her with lots of hugs and kiss & praise. The nurse then told her to wait here for a min, she went and got her Snoopy Bandage and a Disney Princess Puzzle, she asked her to sign the Blood work Courage wall. The nurses told Tom and I that it is great to see parents reassure their children during a scary situation with positive reinforcement & praise! We might have looked like silly fools to others as we took pictures of her big accomplishment, but hey they need that! She loves it and it is something that she will always remember & can now look back on.  It is amazing how some parents don't praise or give their children this praise & encouragement. We were actually kind of shocked at how some parents seem so detached from their kids especially during these scary things they can face, believe or not we did see some! It was almost as though it was a inconvenience being there. I am mean it is not enjoyable for any parent to have to be there, but kids sense this stuff so it is important to be strong for them on the outside but be a marsh mellow on the inside. 

After we were all done with the blood work we picked up Laila who was busy doing her crafts in Clinic 9, went to the gift shop to p/u "Loma" which was named after her action packed day. Loma made her super excited.. Isabelle was excited to bring her home to show her where she would be sleeping & said now Loma does not need to be scared sleeping all alone on a shelf, she has me now! TOO FRIGGING CUTE. Laila scored herself a colouring book and pen at the shop which made her super happy.  We then headed out for some yummy dinner after we made our long rush hour trip back. The celebratory dinner out ended our day off just right! The whole ride home we heard how proud she was of herself and how she loved that she made us so proud of her.. We asked Laila what her fave part of the day was and she replied " All of it", that made me smile. Laila was super good today as we did all the stuff we had to for Belle. Then she passed out for her catnap on the way out of the city!  I sometimes feel bad because Laila gets alitlte pushed aside not intentional but it does happen that we are so focused on the appt and stuff. So it was great to have a full day of stuff focused around all.
It brought tears to our eyes to see how grow up Isabelle was, she is such an old soul... Isabelle brightens up our life everyday, she is such an amazing miracle! She teaches us so much day in a day out. It amazes us how someone we just met 6 years ago has brought so much fulfillment & love to our lives, she has taught us how to love unconditional and it is the simplest things that make her so happy.... Hug and Kiss your little ones everyday, give them praise and acceptance. It is so important and will round them out to be such wonderful human beings.. I think we need alot more Isabelle's in this world... xoxo

Tuesday, May 24, 2011

Happy Birthday

Happy Birthday to me! NOT! I just turned 34 and so far all I can say is DEPRESSING, not sure if it is the age thing or the boredom of turning 34? It just ain't all it is cracked up to be,  awww to be young again!

We ended up doing our May 24 Camping, weather was great, we were with great friends & relaxing well sort of. Packing to get ready to go camping was alittle stressful and we did not even have to take alot of stuff with us as our "Professional Camping Friends" have everything! LOL. So this time we travelled light, but still did not have enough room??  Not sure why that was.... Had we needed to pack more it would have been even more stressful. I am always the one that needs to pack and plan for all of us, which can be really frustrating. You have to plan accordingly, plus take care of all the other things that come along with trips and just the regular household stuff. So it can be alot for one to handle.
We left the Saturday so the kids would get a goodnights sleep on Friday. Tom an I had to watch the kids in shifts which was fine, but because they are out of their element they tend to push it that much more which is really stressful and can make things alitle bothersome & not enjoyable. They tend to try and push alot of buttons while in the company of others, because I guess they think we are going to ease off and let it go.. We do tend to let things go for the most part, but being away from home does not mean that all rules go out the window!  I even thought at times it was easier to travel with them when they were younger.. They are busy now and want to go go all the time, even when they are in the company of other kids you still hear "Mommy come play with me", "Mommy".. Think I might change my name to "Daddy"... Every age has it challenges that is forsure, but things don't get easier, it just changes to another issue so now you deal with alot more little issues.

We did alot, they played on the beach making sand castles, swam, went trampolining (attached to harness') and rock wall climbing. We went for walks, ate & played games, roasted marsh mellows but of course that is never enough. It was alot of fun most of the time,  except when the kids thought they clearly did not do or get enough!! Then poor Laila had a Pee Pee accident which required mommy intervention. So I had to take her to the washroom to give her a shower which turned out to be quite an experience. While adjusting the shower with my 3 year old naked standing in the stall waiting for everything to be all good, the effing shower head broke off and water was flying EVERYWHERE, thank god it was not hot! I was SOAKED, Laila had water in her face,she was freaking out crying in hysterics & me flipping out, then finally the Sherkston cleaner came in and asked if everything was okay. I replied absolutely not, we need you too turn off the water, the water was everywhere in the washroom. Urgh......  After I calmed Laila down got her cleaned up, I waddle back to the campsite in my soaked jeans that were now glued to me... Sunday night was our last night there so we had a lovely dinner accompanied by some yummy cake for my birthday, all dec'd out with glow sticks as candles which was super cute! Very thoughtful. Thankfully there was not 34! LOL  After cleanup we started the fire and enjoyed some beverages, spider dogs, roasted peanuts & popcorn,  it was nice! We had a great time with great friends as we always do, had laughs and get conversation, glow stick sword fights.. LMAO! The theme song for the weekend was "The Duck Song" LMFAO! It is so stupid it is funny & very catchy! Might I suggest Youtubing it..... LOL

Monday came which was my birthday, we packed up and headed home the weather was totally crappy but Thankfully it the rain held off till after we were all packed up, not great birthday weather but the rest of the weekend was great weather. I got home to an empty answering machine which further depressed me! We get only 2 days a year when you become a mom, that are really "Our Days" Mothers Day and our Birthdays & when they don't really go as you thought it can be rather depressing, especially as you get older. I am not sure what it was that I was hoping for but I certainly know it was not that. Maybe I was hoping for a surprise or somesort that would await me at me at home, maybe I was hoping for a flower delivery, but I got nada!! I just feel at times that the whole "Wooing" phase disappears. It is great to get homemade cards from your kids and the little slobbery kisses, but it is the other half that bothers me.. Yes, I get clothes and other stuff all year but that is different.. Birthdays & Mothers Day are special, they are different! We tried to head out for dinner at a restaurant of my choice as a family and got to the intersection the kids were acting out so we turned the car around (as per my request) and came home! I was not about to eat dinner listening to bitching (excuse my language) granted they were tired as were we, but seriously it was my DAY.  Not doing stuff that I do EVERYDAY!!  Would it have been appropriate if I had gone to dinner all by myself? I was already miserable why not!!

It was hard as I was venturing around the campgrounds I started to miss the young days of being out enjoying the "Freedom" of doing what you wanted when you wanted. Adding my birthday into the mix, just did not make it any easier!! At one point I looked at Ang and said let's jump those kids for their golf carts and go cruising sites.... LMAO! I totally get why now days people go through a midlife crisis' type thing... I just don't get why you can't have the best of both worlds? I have noticed that the people that have both worlds are happy!!  I just want to have fun, why do people get sooooo uptight and like their same ole boring mundane life!! LIVE, ENJOY! It is totally okay to do so! Just because we get older does not mean that we need to curl up and die!! We take things so serious at times an that is wrong.. As long as my kids are loved and taken care of it is OKAY to enjoy the fun side of life!! My kids are in no way not taken care of, they are happy, healthy and cultured.. We do family stuff all the time and I think it is soo important to take the time away from them with or without your other half & spoil your loved ones cause they are totally worth it

That was my Birthday RANT!! Ahhh. I feel 10 lbs lighter!

Thursday, May 19, 2011

LONG Weekend

Many Many Many Many moons ago (Shit I feel old,) this long weekend also my birthday weekend,  was always a Party, we would all get ready and head up for a wicked party on the Wasaga Beach Strip.. It did not matter if you had a room or not, you went up and always found someplace to stay even if it meant you were in the car (which people did do). It did not matter if the weather was totally shitty, you still went! May 24 weekend was always a tough one to predict the weather does what is wants and is always so inconsistent. I think I even camped on May 24 and it snowed, that was the last Tent time for me..  Alot of the times in Wasaga we had rooms or camp sites (with tents yuck).  It was just one big party there & so much fun. We would venture there every long weekend, it was our highlight to the summer forsure. We would walk and cruise along the shore listening to the loud music thumping from peoples cars, sipping our beverages (which totally not allowed), running into more people we knew having a great time. We went to bed at the crack of stupid and woke up after a few hours of sleep only to start the day all over again.. Breakfast alot of the times was yet another drink. There were no rules!! OMG the days! Thinking about it is making yawn. LOL  It would be really funny to hear what others remember about venturing to Wasaga Beach every Summer! I am sure there are so really funny stories... God, I can remember a few...
I ended up going their last summer with the Family and setting up at Beach 1 and thought to myself, I never in a million years thought I would be on the exact same beach with my kids & my husband.  We had lunch at the Dard, I sipped Strawberry Daiquiris, even swam I think that was the first time I ever stepped foot in the water there.. It felt soo weird.. The people there seemed so geeky not like from our days, they were driving their parents cars, so many people thinking they were cool... Were we like that? No, we totally were cool & the guys were hot!! LOL It was always so much fun... I at times miss those days, they were so carefree, although our parents probably worried sick about us.. When my girls are asking me to to go to Wasaga Beach for the weekend, hmmm I wonder what I will say?? LMAO

Hello Long Weekend & Look out Sherkston (Family Rated this time)~ So excited, it is a different kind of fun when you are with your little ones... We play activities, swim, they explore nature, make spider dogs, smores and this year we now have a Telescope so they can look at the stars if the clouds stay away.. They love it... It is the first long weekend of the summer & we are hoping that it is nice and we see our shy friend Mr. Sun. It seems like it has been far to long since he has graced us with his warmth & sunny face!
Today and tomorrow I will spend most of my time getting us all ready to make the trip Saturday morning, we are really looking forward to it.  We want the kids to get a good nights sleep Friday so they are recharged for the weekend of late nights. It is always so funny when you going "Vacationing" because now it is in a trailer as oppose to a tent.. Long gone are the days of tents once you go luxury camping you never go back. At the camp grounds, there are always the loud rowdy ones and you laugh because you totally use to be there, so it feels different being on the other side of it all now.  I find that also now days kids are alittle more crazier then we used to be, they get really stupid and cause shit & ruin if for everyone.

Well, I am off to start packing & getting some stuff together. Have a good long weekend everyone! I hope that they sun stays out for the majority of it. I will blog when I get back

Cheers!

Wasaga Beach last year with the strip behind! Oh the memories

Wednesday, May 18, 2011

New Beginnings

Thank you everyone that gave such kind words regarding yesterdays blog, it was a hard one to write! It was wonderful to hear the words of encouragement, sometimes you need that encouragement from others. Emotionally it brings up alot of what I was feeling the first year of her diagnosis. When writing it, I never realized at how I really felt until I began to blog about it & got it all out in the open. You don't realize at how much we keep inside (especially women) until you start letting it out. Maybe I should have gone and talked to someone cause I was obviously not fine, I dealt with alot of the emotion on my own (which I did not have too, I had amazing support, I just get quiet when overwhelmed). I obviously had some problems handling it, I think the thing that kind of gets me, is did I shut Tom out on my feelings? He was there to talk too, but I always portrayed that I was okay & handling it well, when clearly I was not? Don't get my wrong there were times when I was not always strong and we would talk, but there were times that I just held it together!   I think I just did not want to admit that I was not okay so I went on like I was, if I cracked it would mean that I was weak!  You have to portray a strong imagine for your kids, mothers aren't weak are they?? He is pretty good at reading me when I am down and out or something is really bugging me. But maybe he was just as equally upset but did not want to say anything because he had to be the strong one as he always is??

On the outside I appeared calm, cool and collected but on the inside I was a bloody mess!
I think the real breaking point for me was when we attended the TS Conference last year! Wow, I broke down, that was really hard on me, I think I had perma tears in my eyes all weekend.. It was in my face, clear as day, other people stories the good, the bad, the ugly!  The scale for TS was SO broad from not so serious to severe.  I think all weekend I was in a state of panic, I just wanted to go home, I was on information overload. Although we met some great people & made great friends, I just wanted to scream and leave! Everything was still SO fresh!! The friends I made that weekend will last a lifetime!
I think last year might have just been a living hell for me now that I think about and vent... A TS Diagnosis a few short months ago, A move, house packed in storage 2 different locations to boot, not feeling settled, waiting for a new home, designing a new home, motherly duties, wife duties etc....  Then the nay sayers that would be there to knock me back down with even more to ponder which never allowed me to deal... I think had I been in a better place, they would have been outtie long before January 2011... There were times when he would be at work and I would be with her and I would just cry! I was hurt, I was scared of what was too come, because I can't see the future, I did not know how this was going to unfold. Attending Sick kid appointments was upsetting, because I feel/felt like we should really not be there again wanting to run, but if there is anywhere you want to be it is there.  When we are there our kids ask ALOT of questions and you need to hold back the tears at times! It can be a very sad place that they make so cheery and happy because there are so many sick little boys and girls who call that their home day in and day out. The walls are so colourful & bright with happy clowns around to try & cheer them up, the staff is patient and kind. When the girls go into the appts they give them little presents to make it more comfortable.  It is such a fantastic place for little ones, it can truly pulls on your heart strings being there.  No parent ever wants to hear there is something going on with your child & I don't think anyone will ever understand that until you are a parent.

It is crazy how looking back I could see how this kind of stuff can pull a family apart, but instead I think it might have pulled us closer, because clearly I was a mess (I can laugh about now I guess). We always tried to work as a team, but when you have kids sometimes the lines of communication get alittle severed and you being to drift apart! Kids don't make it easy at the best of times on a relationship and when you throw something like this into a marriage it can go either one of 2 ways!!
I remember when we were talking about selling our last house, shortly after the diagnosis. I was terrified, I wanted to sell because it meant new beginnings & a new start to this journey we were on. She was being teased at school for being "Small" and she was heartbroken that her peers would make fun of her size. I knew exactly how she felt, because I did not have a condition and I was constantly picked on and teased in school and that was like 25 year ago.. So I can only imagine how they are today! Little SHITS!!  She was teased constantly, JK/SK kids were wicked, they would make comments as she entered the "Play Pen" from the bus (A fenced yard were the little ones play at school) " look here comes smally", "Why are you SO small", "Smally Dolly". She needed a change and a fresh start because it was not fair to her! I even remember one day Tom taking her to school and one of the boys started up, the kid turned back and saw Tom & shit himself (not literally, you know what I mean) then the kid asked Isabelle who that was? Isabelle told him and smiled. To Isabelle, her Daddy was a hero that day! I think that might have made her an even stronger person. Then there was the thoughts of many memories in that house there were so many things that have happened in this house that it was hard to let go of! It was hard to let go and start over with all the unknowns that lie ahead for us all on this crazy new journey! But when that sign when up, I was anxious to just get rid of it.. When the SOLD sign went up, I was like WOW, this is really happening no turning back now holy shit hang on we are homeless for 3 months... LOL When we did our last clean out, it was a bittersweet leave.

New Beginnings.. Now I can finally say that moving here was the best thing we did! I am cleansed of the crap!! Isabelle loves her school and is not teased, but that is not to say that it won't happen (here's hoping not, but I am not completely ignorant), she was embraced with open arms by her peers! We are starting new memories and have realized that a " A Family Makes the Home" not the other way around. We are a closer team (although not perfect & don't expect to be) we work better together through the ups and downs of. We are here for out kids, solid!   I am a Stronger person when dealing with these issues because the guilt has faded, I feel more settled. I might not always get it right but it is on the right track. I am a stronger person because I have my family and we are healthy and happy! They make me strong!  I guess not being afraid to jump with both feet is not always a bad thing, will I do it again... Hmmm, not sure, that was a whirl wind adventure!! LOL Although very scary, the new beginnings seems to be working, I am in a good place!  TOUCH WOOD & alot of it...

Here's to new beginnings!

Tuesday, May 17, 2011

Small, but mighty

November of 2009 my sweet baby girl Isabelle was diagnosed with a condition known as Turners Syndrome. For those who are not aware of Turners Syndrome: TS affects 1 in every 2,000 - 2,500 females born in the population. Thus we would expect that there are over 6,000 individuals with TS in Canada, 98% of all TS pregnancies end in miscarriage. Turner Syndrome (TS) is a condition that affects only girls and women. It is identified by a difference in the genetic make-up of those who are affected. Most girls and women have two complete X chromosomes (the sex chromosomes for females). Turner Syndrome is caused by the absence of all or part of the second X chromosome in some or all of the cells of the body.
Our First Family Photo.


Ready to take on the world. Look out!

Girls who are missing one complete X chromosome have "classic" TS, often referred to as an "XO" or 45,X karyotype. Others are missing only part of the second X chromosome, or have some structural rearrangements of the chromosome. A mosaic karyotype refers to a missing or rearranged X chromosome in some but not all cells in the body. It is important for someone with TS to know their karyotype since different karyotypes are associated with different potential health issues. TS is not an inherited condition and, therefore, is not passed down from one generation to another. In rare cases, a family may have more than one child with TS, but in those cases the loss of a sex chromosome during cell division happened twice to the same family by chance. In fraternal twins, it is possible for one twin to have TS and the other not to have TS.  Turner Syndrome occurs when a piece of genetic information gets "dropped" during division of the sex cells - or during the process of meiosis. To date, TS is not thought to be associated with environmental factors or any other factors generally associated with genetic problems.
(Thank you to Turners Syndrome sites for helpful information)

Isabelle is a happy, healthy and active girl who is ready to tackle this world. She is a spunky firecracker full of life and has a heart of gold an a smile & laugh that are so infectious and light up any room.  My little girl makes me smile & fills me up with love each and everyday!  Isabelle has no real features of TS other then Short Stature, which is why this dx came as a huge surprise to our Family Practitioners. It all started because we had noticed once she started JK that she was alittle smaller then her peers. So with our Pediatrition we watched her weight & height for a year. Weight gain and height were steady but very slow. So he decided to do some routine blood work to rule out "Celiac and Turners Syndrome" 2 conditions that can cause the slow growth. He was not convinced that she had these but wanted to rule them out, which was totally fine with us. I remember going home that night and googling them & saying to Tom they will be negative, she fits none of the features with the exception of short stature. 3 Long weeks later, sure enough the TS came back positive, so you can imagine our surprise & shock at this news. The only real feature of TS that Isabelle displays her her short stature. After this rather shocking diagnoses we had a ton of questions. I did alot of blaming on myself had I done the prescreening during pregancny would things have been different,  what other health issues does she have that we are not aware of and on and on, I carried this weight around like a bad rash. I was devastated at the fact that my little may never have her own children!  How was I going to tell her this when she was older? I felt it was some sort of a punishment, a bad dream & a million things flood your mind, which sends you on an emotional roller coaster. Although it was out of my hands and there was nothing that I could have done differently. I blamed myself, which took me up until recently to let go of & to know that it was not. It did not matter how many people told me that, I needed to figure it out on my own.  I did everything I could have possibly done to protect her I ate well, slept, I did everything you are supposed to do during pregnancy. This was just one of those things not within my control. The next year would be a bunch of appointments with Genetic Counselors, Pediatric Cardiologists, ENT's, Endocrines at Sick Kids, Xrays and Renal Ultrasounds etc to make sure there was no health issue that we were missing. Our Genetic Counselor who was a terrific lady, advised that Isabelle maybe mosaic given her lack of TS features (When they tested her for TS, they did not test Mosasism). The tell all will come at puberty whether she is, she advised us that Isabelle maybe be missing the Chromosone in her blood, but it maybe present in her tissue but that would require invassive testing & it is not warrented. THANKFULLY, everything checked out as it should. She was in & is in great health, no issues related to TS which was music to our ears. The only real issue was her tonsils & adnoids which have been removed and my goodness what a totally different child since that surgery! She eats and sleeps like a champ and can actually breathe and does not sound like a trucker at night! LOL

With all the testing that my princess has had to endure (which is nothing compared to what some living with TS have gone through or go through on a daily basis) this past few years, I am thankful for her everyday for her good health. She is a tiny miracle, she beat the pregnancy odds, she is a figher, she fought to be here! We continue to do routine followups to be sure that everything is good & it is, she is the 3rd percentile for the normal growth range and 75th in the TS growth range. She may require Growth Hormones starting at the age of 8 depending on if she starts to decline on the TS growth chart, but we are not there yet. This is the tough desicion that we will face & have been struggling with for a while. Our Endo's feel that they want her to wait, let her be a child and not have to do daily injections. It just does not seem fair to gain a few inches, we are okay with that and so is she at this point. If it means that being small is the worse thing, that is all cosmetic no biggy, being small is not a bad thing in fact it may even have some advantages at times! As time has past my "Guilt of failing my daughter" has faded. Some people at that time of dx, I found were like a weight tied to my ankle while trying to swim, I was never allowed to move on from the dx & I always left second guessing my decisions as a parent where Isabelle's health needs were concerned, I always told to get second opinions by the neh sayers after I would share good news from our appts at Family Doctors and Specialists at checkups. Everyone of her Doctors were apparently wrong that she was healthy according to bitter people having bad experiences! Which was so wrong what firends do that?  Some never allowed me to heal or move on, days felt sad and lonely with them in my life! Tom and I both said at the time of her diagnoses we would find the best doctors to take care of her, and we did!! There is truly no ingnorance about TS in their offices, our doctors want to learn more about it, if they are unfamiler with it they research. But we have good Doctors that know about her condition which is fantastic. Our family GP has a friend with a little girl that has TS which is great.  This was just not healthy to be around such negativity. I needed to sever ties there, since doing that I can breathe again! I can leave a good appointment now refreshed and not second guessing their checkups, I can share good news and not have to listen to the "Negativity and what ifs". If I can't trust my GP's then who can I trust? I found that some people prayed on others weakness' and that was what made them function.
I have found some truly remarkable friends that have little girls with TS, they have been a pillar of strength to me. Isabelle has made some close friendships with other girls that have TS which is great, because she knows she is not alone they have a special bond that no other can share! Their friendships with last a lifetime! I remind my sweet girl everyday that she is no different then any other little girl, she can do things others can do! Never let her size get her down, she can do everything others can do if not better. I find that she challenges herself daily and does not give up till she has got it, that is the fighter in her, she may be small but I tell you she is mighty with the biggest heart of anyone I know.


I think our biggest challenge that we will face and we will do so together as a family. Is explaining to her that she may never be able to have children of her own. That will break my heart & some days it still does!  Every mother hopes that their little girls will be mothers of their own someday. But there are other ways to have a child these days and we will cross that bridge when we need to, still a long way away! I at one point wanted to harvest my eggs for when she is older but unless I want to be a Grandmother at 15 I am good (They only store then for 10 years). Isabelle at this age has dreams and ambitions like being a Pilot, Astronaut or a Palaeontologists. These career choices don't include children so I have been told, she also tels me that "having babies is gross & she does not want to have 8".. So at this point I think we can save the baby talk until she is ready!  I will let my darling have a great childhood, experience life, learn, love and grow. We will take care of all her health needs and stuff as parents do best. We will always keep her best interest at heart and never let Turners Syndrome define who she is or have her be labeled. We take it day by day and do realize that things could change, but for now we live in the moment and will face the challenges as we need to! She is our darling angel & we are so happy that she choose us as her parents. We couldn't have asked for a more beautiful little girl to love & to love us back. We are very lucky parents to have her in our lives.


Thank you girls for teaching us to love unconditionally



Monday, May 16, 2011

Rain Rain go away

The sky is grey and gloomy yet again and the rain is cleaning my windows! My street is one big mud bath with puddles about 2 inches deep. So very depressing. As it rains again today for what seems like it has been doing since the beginning of April, we are curled up on the couch watching a movie. This weather sucks.. Last night I thought for sure there would be a glimmer of hope when the sky got a nice shade of pink and a rainbow broke through the clouds at like 8:30.. But apparently NOT!

I hate being a prisoner in my own home and staring at the walls all day long. I would rather be out an enjoying the sunshine. On crappy days like this, I get a headache and get all stuffed up, it is just down right depressing! This weather is brutal for the sinus', not to mention your mental state I really dislike it. The kids begin to climb the walls as they run out of things to do and stuff to play. Let's face it, you can only come up with so many crafts & activities for little ones to do. I would be doing something with them every half hour if I had to keep them busy. Their attention span only lasts a short while.  After a long winter all they want to do is get out to run, play and enjoy the fresh air. I am not one to pack them up and venture to a germ infested play group or a nasty food smelling restaurant play ground, just to pass the day!  They NEVER clean those places and you can smell the dirtiness of it as soon as you walk in GROSS. So home we sit searching the Internet for little crafts etc.

Last week Tom & our neighbour went to a local Home Depot to get the Play set that was promised to the girls when we moved out of our last house. When we moved, it was early March & the ground was frozen solid and we were waiting for our house to be built here, so we had to leave behind their beloved Tree house! So Tom promised the girls that when we got grass in the new house their tree house would be replaced. So we got the grass last August and the kids have been reminding Daddy of his promise! So he fulfilled his promise, which made them so happy! I never break a promise to my kids, ever.. So over this wet and gloomy weekend the neighbours and Tom had been working their butts off in the soggy backyard constructing this playground, while the wives hand them cups of hot coffee! It was COLD and WET! It is supposed to take 6-8 hours to assemble, but thankfully with all the help it is coming along great. Unfortunately the weather is not co-operating but it is up! They managed to get the Playhouse shell up, leveled and stuff, but it was getting just to wet outside to finish. The put together the rock wall and monkey bars in the garage, so now all they need to do is be attached to the frame! But it is just way to wet and cold to get out and do it.. So annoying! I feel horrible for the kids because, all they keep looking at out back is this play set they can't use cause it is sooo wet, cold and rainy!

So until the sun finally decides to come out and allow my little monkeys to go out an play. We will continue to stare out the window at this Playground that can't be used. I hope this yucky weather is not giving us a preview of what our summer will be like? I guess the only good thing that will come out of this rain all week is that "HOPEFULLY" fingers crossed,  the Long weekend will be nice and sunny so we can enjoy our weekend getaway!

Rain Rain Go Away come again some other day. My little monkeys want to play!
Our Playground shell


Our Muddy Street