Sleepover...

Who's gearing up for Christmas?!  We have our annual joke present Hewitt Christmas next weekend!!  So we are preparing our gag gifts this week.  We've thought long and hard all year, and i even keep a list, of possible joke present idea's throughout the year.  If anyone in this family does something anyone would deem "dumb", "silly" or emabarrassing throughout the year, I keep notes:)  This day is filled with laughter and silliness like crazy:)  It's a time where we laugh so hard with our family and friends, we usually cry:)  I really should send you all some pictures of this event in the next update....

    Moving on. 

    Last week Ayla spend a few days in the hospital for sleepovers.  She had a fever that would not go away for 3 days.  I was able to get a hold of her pediatrician who advised us to head in and plan to stay for a while.  On the drugs she's on a persistant fever has to be treated by a certain protocol.  This also included being in protective isolation, which means they stick you in a room you can't leave, and people in or out are supposed to wear a gown and mask.  This is to protect her b/c she's immunosuppressed.  The kind of "funny" part was that b/c of some of the meds, all of her clothes and sheets and stuff had to go into a huge red biohazard box that people in hazmat suits pick up i guess...but somehow she walks around every day touching people and dirtying stuff and other people survive!  I guess it's b/c there is possible radiation in the drugs.  Better safe than sorry, just makes me chuckle b/c all her treatments over the last year NO ONE SAID A WORD in the hospital about the sheets the sat on (or sneezed on). 

    Anyway, she had a chest xray, and loads and loads and loads of bloodwork and cultures. For the most part it was an uneventful visit, none of the tests actually showed anything.  Can someone please tell me why the lab techs come in before she was awake to jab her with needles for blood (it's not scarey at all to wake up to people in yellow gowns and masks on with needles at all....). 

    She got tonnes of new beads for her Beads of Courage necklace and got to do some fun crafts.  Nana came down and played and distracted.  Ezra and Ayla came up some some interesting games to play in a hallway/corner of our room.  Such as Ezra standing in the corner and Ayla throwing a foam hockey puck at him to see how many times she could hit him or throwing these little rubber toys (Squinkies) against the wall and watching them BOUNCE AROUND THE ROOM.  Thankfully Ryan is working in the area now and was able to meet us there when she was admitted and come up every night for dinner. 

    It's been a while since we have any sleepovers, but as soon as i told Ayla that we had to go to the hospital and sleep over, she teared up.  She said, "I'm scared..."  I don't blame her...me too.  Especially considering this month 3 years ago were when our sleep over visits to the hospital began.  And that was b/c of a persistent fever, with no other symptoms, just like this one.  I think she remembers far more than anyone thinks.  She's actually almost the same age as Ezra was when this started.  Thankfully there are lots of familiar faces there now and other than the lab people, everyone was great.  It was actually kind of nice in a way to be in isolation b/c it limited the amount of Resident Docs and Students that would come in and say, "so, can you give me her history?"  To which i respond, "really....?  How much time do you have.  READ THE CHART!!!" 

    We got home last friday and she had been fever free since Wed morning in the hospital.  The kicker was, Saturday night her fever returned....it continued into Sunday.  And i began to grow weary... consecutive nights of hospital sleep do no one any good at all.  And coming home to all the stuff you were supposed to get done but instead had to be at the hospital is overwhelming b/c all you want to do is hit the pillow and sleep for a couple days. 

    Sunday morning in church (of course) i broke down into tears.  But thankfully that place is full of "family" and some special people prayed with me and talked me down:)  Sunday evening her fever subsided and hasn't returned. 

    She had some sores in her mouth that were causing her tremendous pain earlier in the week and she couldn't really eat, but they seem to be gone or at least not bothering her as much now. 

    Something that humbled me deeply this week was this:

We had some missionaires from Serbia come to speak at our wednesday night kids church program.  Vera and Danny Kuranji.  Vera spoke to the kids about the shoebox program, where you fill a shoe box with gifts for less fortunate children in other countries.  Millions of boxes are given.  She shared some stories about children she's given boxes and they open them and exactly what they asked for or needed is inside, some would say coincidence but i think we all know God has way more to do with it than that.  She had a slide show of pictures of these children, some have no toys, some are blind, some are orphans, some are disabled...and pictures of children is hospitals with little bald heads or tubes in their noses.  These children get a shoe box...but what they don't have, among many things, is the ability to have their mom or dad stay with them.  They may come for short visits, but the parents are not able to stay with their children.         

    Now i know there are countries that have no hospitals or very little access to health care or doctors.  I know that these children are fortunate enough to have access to treatment or help.  I also understand that there are children here in the US and Canada that stay in the hospital with no mom or dad with them...(i've seen them...) but this week while i was feeling a little bit washed up and weary of why our girl has to deal with all this stuff, this hit me like a brick.  I get to stay with her.  I get to protect her from a lab tech who arrived premature.  I get to wipe her tears.  I get to hold her for all of her tests.  I get to sleep in bed with her.  We get to eat dinner as a family every night in her room.  All of the things that can be thought of so easliy as...well...sucky circumstances then turn into opportunities.  Things I GET to do.  I am even blessed enough that i don't have to worry about taking time off work! 

    So while, yea, it's not always fun.  It's not always a breezy walk in the park (even though you may be able to function as it is).  But we live in a place where we have doctors a phone call or visit away, a hospital with kind nurses with children just like mine at home, child life people work at the hospital to bring light/fun/joy to crummy circumstances.  A PLACE WHERE WE GET TO STAY WITH OUR KIDS OR FAMILY MEMBERS OR FRIENDS WHEN THEY ARE SICK. 

    That's what humbled me and caused me to be thankful for that hospital.  Thankful for that isolation room.  Thankful for those darn lab techs.  Thankful for doctors and nurses.  Thankful for hospital beds big enough to fit her and I.  Thankful for medicine.  Thankful for foam hockey pucks and rubber toys.  Thankful for HEALING from the One and Only. 

 

    So that's all for today folks...our next specialist appt is just before Christmas.  So maybe with the next update, you'll be seeing some of those crazy Hewitt jokes present chrristmas pictures!

 

God Bless!

Lacy

A funny story to start...9-27-2012

Wow!!  It's been so long since i've done an update!  I've been trying not to burn everyone out with them, but time has flown!
I will start you off with a funny story from the Hewitt household:So this year Ayla began junior kindergarden and Ezra is in grade 2.  We homeschool and this is the first year schooling both children!  So that has been a learning curve in itself.  Well last week, we were sitting down to do science.  We were doing some experiments with water.  One of which involved blowing up a ballon and pushing it into a huge bucket of water.  Which sounds easy, right?  Well, one would think so, except i had just gotten home from the dentist and had some freezing.  Have you ever tried to blow up balloons with frozen lips?!?!  Air and drool were going everywhere except into the balloon.  Finally, after laughing at me for quite some time, the kids blew the ballons up for me and we continued our lesson.  (SORRY, NO PICTURES)Praise update!  Ryan who has been away working for the last 7 months, got a job in Windsor (where we live)!!!  We will not be moving and WE WILL FINALLY BE TOGETHER!!!
The last few months have been on and off eventful.  Ayla started her new medication about 6-7 weeks ago.  It was quite a rocky start b/c we were told she had to take it 2x per day and she could not need an hour before or 2-3 hours after AND that she had to swallow a pill.  She's only awake for 12 hours a day, so 6 of those she can't eat anything?!!?  And you want a 4 year old to swallow what?!?!  Finally, after about a week of doing the best we could of spacing out her food and pills as well as watching her gag on pills, we finally heard from her specialist who said, "oh no, it's fine for children to eat with the pills, crush it up and put it in food."  PRAISE THE LORD.  So since then it's been much smoother.  Just a pain to cut and crush pills 2x a day, but it could be worse:)  She takes them pretty easily now.  And we just finsihed her 4 rounds of once a week bloodwork, and she's handling the meds fine.  Now we only need to do bloodwork once a month, and she's a total pro.She's also still on her weekly injections, which are seeming to get harder on her.  She hates them and questions why she needs them.  So that's becoming trying...considering she's had them for 2 years now.
She has a new brace for het left leg that she wears at night b/c she grows so rapidly (Praise the Lord), her heals don't stretch and she walks tippy toes.  It's helping:)As you know her monthly IV's at the hospital are done, since it wasn't working like they had expected.  She misses the nurses and child life people greatly and we have been to visit and we will go again soon.
We just had a trip to Sick Kids this past Monday.  One of the doctors think there has been a bit of improvment, the other is not so sure.  He would rather wait a couple more months on this med and check again.  I think her skin feels maybe a little different...??  Hard to tell.  And she has some darkening of skin on her torsoe and hips.  The Derm said that sometimes this happens to the skin when it's healing, so to keep and eye on and see if it spreads.  We go back just before Christmas.
Can you believe October is 3 years since Ayla started getting sick??  Seems like both such a long and short time...when we think about all the things that have happened, it's hard to believe it could all be crammed into such a short time period.  It's amazing the things that God has done in her little life and in our family.  Even now, just recently, i've been able to tell people the great things God has done for us and our girl, to strangers.  All b/c of this necklace that i recently got fixed.  It's 3 "Jesus fish".  In the center, they all touch and form a little triangle.  It symbolizes "Be still"...which some of you may remember were powerful words early on.  I've been able to tell them how they didn't really think Ayla would recover and be able to walk unassisted and they see her running and laughing with her brother, like nothing happened.  So...3 years later, amazing things are still happening...I've been thinking as of late, I think some day Ayla will have a "normal" life.  A life without needles and hospitals and doctors and nurses.  A life with out casts and medication and phsyio therapy.  I have never tried to much to think about the future, just take things one day at a time, but i think it will happen...imagine all the things she'll be able to do then.  I pray that we never forget all the things we've learned and seen and felt on this journey...that we never forget to share those things either.  Those miracles that get so easily over looked in our fast paced world.
The miracle of a little girl walking...and playing...and smiling...and HAPPY.Lord help us never to forget...In His Love,Lacy

Ayla update July 2012

Hi everyone!  I hope you all have access to air conditioning wherever you are!  Today is a hot one!

I jsut wanted to send an update out about our appointment that we had at Sick Kids in Toronto yesterday. 

We saw both the dermatologist and the rhuematologist.  They have both agree'd that the infusions that's she has been getting over the last 10 months aren't doing what they wanted. 

They think she is possibly getting worse in the tummy area.  Her fascia (layer under the skin) seems to have more inflammation there than in other part of her body.  Legs and tummy seem to be the area's where it's the worst.  Plus side is, she is growing like a weed.  Certainly catching up on lost inches and pounds!  That was something they were/are concerned about b/c the fascia restriction/tightness could inhibit growth.

So the next step is a broader spectrum oral medication that she would take 2x/day along with the injections we do at home.  The side effects of this medication are similar to those of the injection she's been getting for 2 years.  That said, they would be doing bloodwork weekly for 4-6 weeks, biweekly, then 6 weeks (which is what we do now). 

I have some research to do on the medication.  It's called MMF-Cellcept.  It's apparently been used to treat her disease (Eosinophilac Faccitis) in adults before with success. 

After about 2 months on the medication we would return back to Sick Kids for evaluation but likely will keep doing it for 4-6 months in hopes of results. 

Still the best hope is for her to wake up and have this disease gone, but we keep pushing forward accepting the path we are on knowing God is with us and with Ayla, no matter how long she has this disease for. 

He's given us much peace over these last few years and continues to do so.  Ayla is so amazing and only He could make her so resilient:)  She even smiled at a doctor yesterday! 

We were able to see Ryan's Aunt and Uncle.  His uncle is currently undergoing heavy radiation therapy at Princess Margret, which is right accross the street from Sick Kids.  It was good to see them.  Please pray for them if you have a moment. 

So far there is no movement on our house.  We have another open house this coming Sunday.  Hopefully we will all be able to be together as a family soon!

Thanks and i hope you all have a great summer!   

May 28, 2012

Hi everyone! 

Happy super hot May 28 to you all! 

I was looking at the blog i keep for Ayla last week and realized i haven't updated since the end of march!:)  You should know, no news is good news. 

 

I think i sent a breif email about some blood work issue's she was having about a month ago.  Those have since resolved themselves.  She did labs once a week for about 4-5 weeks and was off her medication b/c her liver was overfunctioning.  They still have no idea why, unless she was fighting some invisible virus.  Thank the Lord for no relapse and that the week she had to go back on her meds, her labs were totally normal!  My babe was getting really tired of all those pokes (as was I).  So we are going back to our 6 week labs.

 

Ayla is still having some nausea from her weekly injections (even with tummy pills), not to the point of throwing up anymore, but the following morning she is queesy when she gets to pre school, after driving in the car for about 40 minutes.  We think its a combo of already feeling a bit sick to her stomach and then motion sickness from a long car ride.  We are going to change the days and make sure the day after she gets her injection is a home day with not too much driving. 

 

She has 2 treatments in the hospital left for her experimental drug, June and July.  She's handling them very well and building up lots of beads for her beads of courage collection:)  We love all the nurses in peds days, they are amazing as well as the child life workers.  Just awesome.  I remember being so afraid of how she would cope with these treatments after being so broken, but God has made her so strong and resiliant!  We are so thankful!  Mid July we will head up to Sick Kids in Toronto for a reassessment to see how the experimental drug is working and to decide whether or not to reapply for funding and continue with them. 

 

This summer is going to be an awesome summer for Ayla. We can finally breath easier about her bone issues and no longer have to hold our breath for too long when she falls (like the other day when she was climbing up the sliding end of our backyard slide!!!!)  She is doing amazing in swimming lessons and loves to be outside so much. 

While i sit here and reflect on the last 2.5 years...God is so amazing.  I don't think i would have enough paper to list the miracles and great things he has done through Ayla's illness.  Two of our best friends were baptised this weekend...part of their story was watching our family cope through Ayla's illness.  God can turn terrible awful things....into amazing wonderful beautiful things:)  Praise the Lord.

 

Ryan is still working in London and it's going well.  His 3 month review is coming up this week, i'm pretty sure it's promising.  I think they are thankful to have him. 

We listed our home a couple weeks ago and have only had 1 person through, which is a bit discouraging.  We have an open house next week.  It's been a bit stressful trying to get stuff done on the house to sell when Ryan is gone all week and we only have weekends.  It means sacrificing family time when he's home to finish up projects...hopefully this weekend coming will be the last one we need to do that.  Please be praying about this.  We have looked into buying a house in St. Thomas, so i think that is where we will end up.  I like it much better than London itself. 

We are feeling very torn b/c we have connected and love so many people here in Winsdor.  It's going to be hard.  We are just praying for the Lord's guidance in this situation.

 

Anyways, that's all for now! 

We love you all and are so thankful for how you love and encourage us!

Lacy

 

Ayla update 3-30-12

So most of you know that we had a rough few weeks with Ayla vomiting for days and days after her weekly injections we do at home, and she lost a lot of weight.

After jumping through some hoops, i think we got it figured out. We were able to meet with her Rhuematologist last minute, the same day we were meeting with her "bone doctor" (endocrinologist) last week. She needs to be getting a certain amount of folic acid to counter act the side effects from her weekly injections. We have been giving her what they told us to 2 years ago, but apparently it should be 50% more. So we are going to try that for a few weeks, on top of antinausea meds and then do an experiment and take her off the antinausea meds and see what happens.

On a positive note: Ayla was discharged from endocrinlogy. As long as there is no more fractures and she doesn't go back on steroids long term, we don't need to see him anymore! Thank the Lord! Her bones are almost "normal". So we gotta just keep doing what we are doing. Calcium, vit D, therapy, and run and play and move lots to make her bones stronger.

Monday i took Ayla for her regular bloodwork she needs every 8 weeks or so. Wednesday, i recieved a call from the lab we get it done at as well as her specialist saying her labs were abnormal and to see a doctor ASAP. Her specialist is away at a conference, so i was able to connect with her secretary. It's Ayla's liver enzymes that are up, meaning her liver is overfunctioning. We were told to not give her her weekly injection this week, and no tylenol and retest on monday and have it sent "STAT". It's likely her medication that is doing this, it's always something they watch for. Liver and kidney function.

I'm not quite sure what this means, and will hopefully hear from her Rhuematologist early/mid next week about her lab results. The kicker is, when i took Ayla she was so angry to be getting bloodwork and it was comforting for her to know that it would be a long time before she would have to do it again....7 days is not a long time. She's going to be livid come Monday morning.

I'm a bit concerned about a relapse in her condition b/c she didn't get her treatment this week. Yesterday she was complaining of some stiffness. So we'll just have to leave it all with God and no He is in control of all this.

Something i read in a devotion earlier this week from "40 days with Jesus, Celebrating His Presence-" Day 1:

"...Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me."

I long to understand God's plan for our family and for Ayla as an individual. Sometimes i feel like it would make it all so much easier...if we just knew why. But then what would the point be? It wouldn't really stretch us as much as needing to trust Him with and in all things. It wouldn't really be that much of a light to others if we 'KNEW' or they 'KNEW'. We wouldn't really need to walk close with Him if we just 'got' it all...in fact we wouldn't really need Him at all would we? We would fool ourselves into thinking everything was about us...and not the Creator. Understanding....well, i guess it can be a slippery slope.

Proverbs 3:5-6

"Trust in the LORD with all your heart and lean not on your own understanding;in all your ways acknowledge him, and he will make your paths straight."

Something else that stands out in my head is a few weeks ago, some pastors, staff, and elders were praying over Ayla and our family because of the vomiting and what not she was experiencing with no rhyme or reason at the time (she didn't really throw up anymore after that); one of them mentioned that we could look back on this...all of what Ayla has gone through, and use it to remember what God has done in her and our life. That these memories would be like to stones that the Isrealites took out of the Jordan River after they crossed to always remember what God had done for them...for generations.

Joshua 4: 5b-7-"Each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, 6to serve as a sign among you. In the future, when your children ask you, ‘What do these stones mean?’ 7tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever.”

Sorry for the lengthy update...i just had lots i wanted to share.

Ayla's beads that she got today. The hospital in Windsor adopted a new program from the States.

The two bigger colorful beads are for each 100 (so 200 b/c there are 2) pokes, procedures, surgerys, xrays, testing, home injections, etc that she has had in the past. Now we have a tracker so we can track what beads she will get. Makes it kind of fun, all the colors:)

The the small black one is for a poke today, and the small purple an infusion treatment. Each time she gets something done she'll be able to add certain colored bead depending on procedure. It's very cool. They do a similar thing with Bravery Beads for kids with cancer.

Lacy

Ayla update-results

I wrote out a whole update and then our power flicked off and poof...it was gone!

They decided to keep Ayla on the experimental medication for 6 more doses. They didn't notice a HUGE difference, but a bit, so they will check again in 6 months. If there isn't a measurable difference after that, then we think, regaurdless, we will take Ayla off.

It was a while before we heard back b/c the doctors had to apply for more funding for us, in order for Ayla to recieve this $1100/dose medication. Thank the Lord, the funding is given for 6 more compassion doses.

She goes in tomorrow for a treatment and then once a month for the next 6 months.

That's all for now! Her birthday is this saturday! She will be 4 and is super excited about it (as am i!!). She's happy and healthy and looking so forward to a fun birthday:)

Lacy

update 2-17-12

I'm begining to wonder if winter really is going to come this year...now i may be eating my words now that i've said something, BUT WHAT IS GOING ON!? We were actually in the yard playing driveway hockey with sweaters on earlier this week...bizarre.
The last time i wrote was almost 2 months ago, right before Christmas!
I hope you know, "no news is good news."

I figured i would write now to let everyone know that we are heading to Sick Kids on Monday for a few specialists appointments. The plan is to evaluate her to see if this experimental medication is working.
There was some misunderstanding between the everyone and the pharmacudical company. We all thought Ayla would be treated for 6 months, but it was 5 doses or 6 months. That said her 6 and final dose before an evaluation was supposed to be tomorrow...but it won't be happening.

If we get to SICK KIDS and they decided that the treatment should be continued, a laps of the week or so it will take for govt and pharm to approve funding, should not be a big deal apparently.
So Monday we will find out whether or not this medication is working. We haven't noticed a huge difference in the feel or texture of her skin, nor have her therapists but the doctors will be the judge.

One thing that a number have people have began to notice is how much happier she is! It wasn't long ago when i had a conversation with one of her therapist and something i had observed but never said out loud was brought up, "she doesn't seem to have any joy..." And that was the honest to goodness truth. We all knew it. But i'm happy to say that the overall consensus from teachers, therapist, family, and friends is that Ayla is a happy, fun, chatty little girl:) She's finally breaking out of her fearful shell and having joy! That will certainly be something we bring up at Sick Kids. Whether it's because she's feeling better physically, or if she's just finally healing emotionally...we don't know. But thank the Lord...because this is another miracle. My heart broke when i knew our wee girl had no joy...and my heart leaps to see that joy there! Finally!

Ayla's last treatment in January went horribly, it was the worst one...i would say since we first began our admissions over 2 years ago. Then, Praise the Lord, a nurse we have worked with before had just come on shift and came right in. She was so nervous and really wanted to get the needle in her first try. We all actually prayed just before she did it, and she got it! After 2 very long and agonizing pokes with a nurse that just would not say, "i can't do it," nurse Robin saved the day! Poor nurse Robin. She was shaking so badly she couldn't even tape up the IV line. We love her, she is so kind hearted:) It's so funny how quickly you can connect with people in the midst of pain...that's certainly another thing we have learned over the course of these last 2 years.

Ayla's 4th birthday is coming up on February 18th! I can't believe she'll be 4! We will be having a little celebration with her. I desperately want her 4th birthday to be joyful for her...and those that love her. I look back and don't have great memories of her 2nd or 3rd birthday. Her 2nd birthday...was a couple months after she became ill. She was emaciated, sad, in pain, immobile, she did not smile or laugh the whole day, presents and all. And last year, her 3rd birthday, she fell and broke her leg...for the 3rd time (the last time, thank goodness). So as shallow as it may seem, i really want her to just have a fun day. Not a big fancy, over the top, shin dig; but just the people close to her that have seen the miracles happen in her short life all together to wish her a HAPPY 4th birthday!

Thank you all for following my emails and updates over the last more than 2 years now. We are thankful for all the prayers and love and support. We will let you know what the outcome of Monday is.

I'm going to send you a picture of Ayla...she's ICE SKATING! Yes, you read that right. She's learning to skate...and loves it. I try not to cringe when she wobbles, but daddy is usually right behind her to catch her before she falls.

Blessings to all,
Lacy