A new road to travel

Copy of an email I sent to family on September 23, 2011.

Hello to our lovely sisters!! (and parents)

I am sending you all a joint-email because it'll be easier for me to just keep you all informed in one fell swoop. (and I decided to add our parents as an after-thought even though I've had telephone conversations with parents)

To provide a quick bit of history, Ellie was in the hospital again in August for another asthma attack. As usual, we then went and made the rounds to her doctors to make sure everything was okay once we were discharged. She had lost a fair amount of weight (7% = 1.5 lbs) so I raised this as a concern from my perspective and her pediatrician decided to re-run some tests.

In Alberta, when a baby is born, they do a whole raft of genetic-type tests (don't even know them all) with a simple heel-prick blood test. She had these done again in fall of 2009 - Cystic Fybrosis and Failure to Thrive tests were part of the deal. Her pediatrician said he'd do them again just to see if anything had changed - he was pretty sure that this was highly unlikely, since they had already been done twice, but he was just being thorough. What he did order was a bone age test, which was a simple x-ray of her wrist to see how old her bones are. Ellie and I spent one afternoon last week at the Children's Hospital going from clinic to clinic to get all these tests done, and while it was just tiring, it was a lot of fun to hang out together and she did great.

So all the bloodwork came back fine - all organs are functioning well and there's no absorption deficiencies or issues. What he had wanted to see in the bone age x-ray was a bone age much younger than her chronological age. Ellie's developing as what he calls a "late bloomer" so on the slower side of "normal" - she's walked later, talked later, gotten teeth later etc. than her age-group. He's not been concerned about this at all because she seems to be developing fine - but what we were hoping was if her bone age was younger then we'd be able to benchmark her height, weight and developmental skills against kids that are that age instead of the kids that are 3 because she doesn't compare with kids that are 3.

Well her bones have come back at 3 years old, so he was disappointed in that (with the other news he gave us I forgot to ask any questions along this line of what does this mean, etc. so don't ask me anything about this because I have no answers!)

What her wrist x-ray did show was that her bone density is not where it should be. There are also marks on her wrist (he said similar to rings on a tree) that would suggest she has stopped growing during times of illness. He read the x-ray report and some big fancy word was said which I never wrote down and can't remember the ending but it started with "osteo-..." I asked if this means she's likely to develop osteoporosis as an adult and he said "well, this is sort of what we're saying she has now".

He's concerned as to why her bones aren't as dense as they should be and that is what we have to find out now. There are side-effects from being on inhaled steroids for long periods of time (her puffers) and she's had not an insignificant amount of oral-dosed steriods when she's had her trips to the ER for her asthma attacks, so this could be part of it even though her dosages are extremely low.

So we are now being referred to the Endocrine Clinic at the Alberta Children's Hospital, where he said they will likely do a bone density test and figure out what is going on with her bones. It will take a few months to get into this clinic, so until then, it's just life as normal for us.

Everyone keeps asking me "how are you feeling" - it's hard to say really. I don't think Mark and I are in shock - likely stunned is a better adjective to describe what we're feeling. I don't think either of us are overly worried at this point, just looking at this as another path in this world of Sick Kids that we have be travelling since Ellie was born. I think Mark put it very well yesterday when we came away from the appointment - he said "it would be really nice to go to one of these one day and have them say 'we didn't find anything wrong' ". True, true, true.

At this point, the information I have communicated in this email is all that we have to share. We are fine to field questions as people have them, but there's nothing more we can add to the above information. Her pediatrician said it'll take a couple months to get into the Endocrine Clinic, so we just wait. A blessing we have is that my cousin's husband is a doctor in the Endocrine Clinic at ACH, so I know if we have any questions or need someone go over things with us again and help us come up with questions, he'll be a good support for us. It's also tremendously less scary knowing we're going to his clinic!

I would like to just ask that you keep us in prayer and that Ellie stays safe. Her pediatrician said that she's more suseptible than the average kid to break a bone - her favourite toy is the playground and she's quite the dare-devil so while my response is to completely protect her, I know that is not the correct action to take!!

Thanks for all your prayers and support - for the local family, I may need Will-care when it comes to the next round of tests. We'll keep everyone informed as we have info to share.

Love & hugs,
Lori, Mark, Ellie and Will

Hospitals and Angels

We have been in and out of various ER's and hospital clinics with our children to know that there are angels among us with each trip. I mostly try to watch for the opportunities to encourage other parents but often times it is me who is being encouraged.

Last week we experienced two trips to the ER with an asthma flare-up for Miss Ellie. The second visit resulted in another over-night hospitalization and another pneumonia diagnosis (well at first anyway). The Children's Hospital was full, so Ellie and I experienced a new adventure - an ambulance ride across town in rush hour to the Peter Lougheed Hospital. Enter a set of angels -- our EMS guys.  It's difficult to pin-point exactly what they did, but Ellie bounced back during the ride and chatted away to them. They enjoyed her "cuteness" and her cheerful chatter and we had a wonderful visit while we sat in traffic.

The doctor we saw at PLC suggested that perhaps the pneumonia wasn't pneumonia after-all - he said that's a difficult diagnosis for asthmatic kids to begin with. It looked like we were only going to be in one night which was a relief.

The reason this hospital night was more difficult than the past ones was because Ellie knew she wasn't at home, and she knew things weren't right. Perhaps I've been naive to think that Ellie and her love of all things social wouldn't be affected by all these visits to the doctor. I remember being very upset that we had to be at a hospital across town in a district of the city where we knew no one and had no family. I had to constantly remind myself that we would be okay.

It was amazing to see our family and friends rally around us yet again as we charted through waters never traversed. My underlying thoughts rolling through my head was "how do I do this with a baby!" Yet we did, and we're stronger for it.

One of the most wonderful parts of this story is that of another angel. She was my best friend from Grade 3 to Grade 6, and while we likely tried to remain friends through the changes of schools and the inevitable growing up that Jr. High brings, time passed and we grew up. The cool thing with Facebook and other social networking sites is the ability to reconnect with friends gone by, and we had the privilege of "finding" each other in Facebook land. (In the interest of divulging our ages, I won't confess how long it has been since I've seen her, but it's been at least 20 years).

Well this friend of mine messaged me and was willing to help in whatever way I needed - what a blessing! Just knowing that she was nearby was comforting since my family and friends were on the other side of the city and I was feeling very alone. I asked her to bring me lunch so I wouldn't have to leave Ellie, and she said it would be no problem. It was phenomenal - we haven't seen each other since we were teenagers and in that ugly/akward stage of life. While we've both grown up, have straight teeth and (thankfully) straight hair, truly time had not passed.

I've heard people say that true friends are friends for life and until lunch on Friday, I don't think I ever really understood the meaning of that. I was so blessed by a simple act of my friend bringing me lunch and visiting with my daughter and I - I pray that we all have friends like this.

Adventures in Rolling

About three weeks ago, Will started the "I'm-about-to-roll-over" process, and it has been a lot of fun watching him learn this first momentous step of mobility . He would lift his legs straight up in the air and throw them down to the left, looking like the letter L. Eventually his shoulders caught on to the flip and there he'd be, stuck on his shoulders and shout till we helped him.

One night when I checked on him before going to bed, he was sleeping on his side - I pulled Mark in and we enjoyed watching our boy sleep. As we prepared for bed, we laughed at the thought of the potential reaction for when he actually did flip onto his tummy

July 1, 2011 - 1:35 a.m. I rushed into my shrieking baby's room to discover that indeed, he had flipped onto his tummy in his sleep. Oh the trauma!

The last two weeks have been a fun learning experience for me as much as for Will. He's progressed from taking several minutes to complete the roll-over to doing it in seconds - back-to-tummy. He's enjoying his belly time and tries to reach for things - already pulling his knees under his belly and pushing with his feet while pulling with his hands. For me, this experience has been completely amazing. Since my first baby was harnessed/braced until she was 6 months old because of her dislocated hips, she never did anything like this till she was 8-9 months old because she simply couldn't! I have no idea if Will is on target, ahead or behind in this, but I think he's brilliant.

Of course if he wasn't my second baby, I would be wondering if he was ever going to figure out how to roll towards the right or if he'll figure out how to roll from his tummy to his back. Mark assures me that he will figure out this rolling business by the time he gets married.

In the meantime, I have enjoyed going into his room in the morning to find the unique nooks and crannies of his crib he has jammed himself up into - his favourite is beneath his little aquarium.

Mother's Day

She squeal's "Mommy!" whenever I come home; she shouts "HUG!" whenever she wants one; she thanks God for chocolate milk at bedtime prayers. He smiles whenever he sees my face; he coo's and waves his arms to catch my attention; he loves to snuggle. They have made me a Mom and I am blessed.

 Perhaps the memory I will never forget about Mother's Day 2011, is seeing Ellie watching a video before church naked. When I asked Mark if there was a reason for the nudity, he looked quite stunned - guess she stripped all on her own. Who knew watching a Dora show would be much more comfortable in the nude!

Happy Star Wars Day!

Years ago (like over ten), my younger sister called me up on May 4th and said "may the fourth be with you" - it took me a minute but then I got the reference and nearly died laughing. Therefore, each year as the 4th of May rolls around, I remember that phone call and have a little chuckle to myself.

Perhaps the thing that is the most humorous is that I really like Star Wars and that style of movie or TV-show (I was a huge Battlestar Galactica junkie right along with my husband). Mark thinks it's awesome that I like a good Action or Sci-Fi film, but the downside for me is that I have absolutely ZERO leverage to get him to see chick-flick's with me. I will point out that he has done his husbandly duty and watched the full six hours of "Pride & Prejudice" as well as my favourite musical "Seven Brides for Seven Brothers" without complaint.

I look back to the "I-want-to-get-to-know-you-more" dance that we did in April/May of 2005 with pride. I got this guy, who hardly ever spoke to me, to ask me to the movies (one in particular) - I basically told him I'd say yes if he asked me. While the lines of who asked whom out on the first date are often disputed with much love, I holdfast to my defense that I merely gave him the solid invitation that asking would result in success.

Our first date was May 20, 2005 and the movie we saw was "Star Wars Episode III: Revenge of the Sith" on opening weekend. It was a terrific night and six months later he asked me to marry him, so I ask you, does it really matter who asked whom out? I say no, it really doesn't (though it wasn't me).

We have held fast to our love of Star Wars, and in March, Mark bought me the Lego Star Wars game for the Wii (we gave away our Play Station version last summer). Ellie is now getting lessons on the game - with her favourite character being R2D2 and the fun sounds he makes. And Baby Will? Well he's not too young either, but I'll let the photo do the talking.

So forgive me when I say: May the Fourth be with you!!

All things Princess

Unless you’ve known me since childhood, you likely don’t know that I adore the British Royal Family and grew up with this secret desire and belief that I would one day become a real princess. (This was interrupted for a year or two when the New Kids on The Block came around and my heart was with them).

My elementary school BFF Jesse and I used to parade around the playground at recess with this terrific game we’d dreamed up that we were royal princesses. We dreamed up our kingdoms and adventures that were executed with perfect British accents and it was a game that lasted years. My Grandma and Grandpa had collector magazines and tons of articles that they gave me to start my first scrapbook (which I still have), and I saved my allowance money and faithfully bought the monthly Majesty magazine issue. 

Looking through the wedding photos of Princess Diana and Sarah Ferguson’s weddings fueled my princess dreams and my determination that I was going to have a ball gown wedding dress with a veil the length of my train just like them.

Now I must pause and borrow a statement from my dear friend Jesse’s blog – we did have other friends in school and have grown up to become successful and well-adjusted adults.

As I have gotten older, I still have a deep love of all things “princess”. I think I surprised my in-law’s the first Christmas we spent with them as I would randomly burst forth into song from the movie “Ever After” that had just been released. However, they are used to my frilly side and just smile when I tell them of my Pretty Princess Tiara that I would wear during the final stages of any University course (it seriously helped me study), or if I tell them of the Tiara bowl I refrained from buying at the Disney store (I would have had to share with Ellie or bought two, but I’m sure Cheerio’s would have tasted sublime). 

Thankfully I have been blessed with a husband who, after 5 years, is starting to get used to this side of me. While he was surprised that I was going to blog about the Royal Wedding, he wasn’t as surprised as when he found me watching TV one night wearing sweats and my wedding veil (something every girl needs to do).

Watching William and Kate’s wedding was so exciting for me and while I wasn’t able to share it with my BFF Jesse or my sisters, I did get to share it with my own young Prince Will and I tried not to complain too much about how tired I was the next day. 

While I didn’t become a princess on my wedding day, two things did happen. First, I married a man who adores me and treats me like royalty every day. Second, my veil was longer than my train….

Paying it forward

My first child was born full term, incredibly small and was diagnosed with hip displacia at birth. I remember someone coming to my face in the O.R. and telling me my brand new baby's hips dislocated even before I really saw or held her and not having a clue what that meant.

Very quickly, my husband and I went on a crash-course in hip displacia and through the haze of sleep deprivation and new parenthood we learned what we could. At 8 days old, we took our little baby to the Orthopedic Clinic at the Alberta Children's Hospital (ACH) and she was put in this completely barbaric looking body harness to keep her hips in the position they needed to be in so they could finish growing properly. We were told by the nurse as she strapped our daughter into this, that this brace would never come off and we were left with an uncertainty of the future that we had a difficult time describing to anyone.

We adjusted to our new normal which included regular trips to the Orthopedic Clinic at ACH, and got to make lots of friends along the way. Two things frustrated me the most - first, when people would ask if my 3-month old was 3 weeks old, and then the "what's wrong with her?" question when I would respond her true age since it didn't correspond to her size. Second, once I was changing her diaper in the ladies room at the mall and a stranger came and discussed her experience with hip displacia when she saw Ellie's body harness.

After one particularly tiring visit to the Orthopedic Clinic with Ellie, we sat in the caffeteria area at the Children's and listened to the Choir sing Christmas Carols to all who were there and I cried. A stranger came up to me and asked how old my baby was. When I told her she was 3 months old (she was about 8.5 lbs at that point), the woman gushed over how beautiful she was and how she just knew that she was an older baby even though she was small. She told me that she'd had a small baby too and that Ellie would eventually catch up - I left with a lighter heart and thankful for the encouragement.

Ellie was pronounced healed at 6 months old, and I went away from the experience deciding that I would use our experience to be there for someone in the future. Fast forward six more months and the shocking phone call from my little sister that my niece who's the same age as my daughter had just been diagnosed with hip displacia too! What a ride that was, never EVER did I think that my first support role would be to my own sister!

As a result, our Orthopedic Doc (who just happened to be the same guy for both these little girls), put a screening plan into place for all of our subsequent children since it was now obvious that hip displacia was a genetic trait in the family.

So last week, Baby Will was 6 weeks old and sent for his hip ultrasound and tomorrow we back to the Orthopedic Clinic to hear the results. I have learned I am incapable to attend any clinic at the Children's Hospital without a level of anxiety and stress, but I am trying not to overly worry about tomorrow's appointment.

What I am trying to focus on is the opportunities Will and I will have to meet new people and who we will be able to encourage tomorrow. Last week both my kids had ultrasounds at the ACH Imagining Clinic, and thanks to the assistance of my parents (yay for retirement!) I was able to be in two places at once.

As my Mom and I came out of Will's appointment, we were met with Dad visiting with a family in the waiting area while Ellie played with a little girl who was built in miniature form just like Ellie. The mother told me how encouraged she was to see a miniature child that was several months older than her own, who was talking (well sort-of), walking, alert and interactive, and hitting developmental milestones. She quickly told me of the worry the doctors were putting her through because her daughter was small, but after seeing Ellie she said she wasn't going to worry any more.

I left feeling exhausted and blessed at the same time and it reminded me about the visit I had with the stranger when Ellie was three months old. I am so thankful that God puts people into our lives to encourage us and for us to encourage - the trick is to recognize the opportunities we have to encourage those around us, something I am going to be more attentive to, especially in the realm of the big scary Children's Hospital!