Please excuse us if you only read here about Jessika being sick and us ranting, but when she is well we dont find the time to blog, we spend time with her. And she sleeps more when she is sick so we write here to let friends and family know whats going on. She is well 85% of the time and very happy, loving singing/speaking and playing ( especially going outside)..

many thanks..  

 

September 14th 2012

Its been a rough 3 weeks since Jessika caught a simple cold around September the 1st and we decided to go in to hospital before any complications arose. We were in there for a week and then sent home even though Jessika is still suffering with the cold and needs constant suctioning every 15 min without the Bi-pap on. She is vomiting everyday usually in the morning and around her feeds, we are not sure if its the stomach flu she got with the cold or if its something new or aggravated by our suctioning? Needless to say the nursing help that was just approved today for two 4 hr blocks a week will come in useful until they make the final decision on 32 hrs a week for Jessika to have a nurse. We know we are on a downwards slope now with her health, but we never realized how terrible it is to have no real tests or trials for type 1 SMA children. We are excluded from almost every cure test or trial on usually 2 or 3 reasons (they want older than 2 yrs old, her having a G-tube, the fact she is type 1 and not having a life expectancy of more than 2 yrs from start of any trial) So let’s hope they have a breakthrough in one of the other types that can trickle down to Jessika. Even a treatment to alleviate some of her symptoms would be amazing like with diabetes (no cure but with medication almost normal life) and they are out there I am sure but where and how do we get them?Wow was it really April our last update on here (June 16th 2012)

Well that just goes to show how well the FaceBook page for Jessika is doing.. 59 people so far and still more add every day.. the link is above somwhere.. and of course we will keep this one for some updates and information for people who just dont want Facebook.. and for the donation button found furthur down that i dont think facebook will allow on their site .. yet.

:-)

well we had an operation planned for 20th april and it was cancelled due to lack of ICU beds just as we got in the hospital parking. then to be honest we had 9 weeks of amazing weather and great health and good times at home.. my mum even came from England for 3 weeks. the next op was scheduled for 13th June.. but again was cancelled for the same reasons.. we are so happy that we have been able to be at home and enjoy time with Jessika, i am on compassionate care leave and this time with jessika is priceless.. i really do hope you go and see all the updates and photos on Facebook. So sorry its been so long and thank you to the two people recently who donated to Jessikas site.. i will get time to add your names to the thank you page.. one of them is Rob Morin who just by chance saw my email signature to this site.. thank you.. his and your donations couldnt come at a better time..

April 7 2012

Happy Easter weekend everyone...Jessika will be enjoying the beautiful weather with a walk to Quinn farm to visit the animals!! She's doing well, getting over her cold, happy to be at home! Missing her brothers though, she's been asking for them every day since we got back home. As long as the weather is nice we can have visitors over because we can stay outside, then at least Jessika sees someone other than me and Jeff. We'll have a little visit from Christian and Oma tomorrow so we can give him his Easter present!
We put a bird feeder just outside Jessika`s window and she has really loved seeing all the birds come and eat (baby birds, mommy birds and daddy birds according to Jessika) but really we`ve seen woodpeckers, chickadees, red winged blackbirds and sparrows.

April 03 2012

Ahhh! we're home again! with a follow up next week and a procedure the week after! So tired, Jeffrey Parry was amazing in the hospital letting me sleep the early shift every night so he is very tired too but it's so nice to be home and looking forward to sleeping in our bed instead of a hospital chair tonight!!! Jessika's not out of the woods yet, CT scan from yesterday showed that she has a deformity in her lung that is giving us all these problems. Apparently she has an extra bronchial, it's very thin and keeps getting plugged with mucous when she gets sick, acting like a one way valve letting air in but not out after so the lung is blowing up like a balloon, pushing everything else over to the point where it caused the left lung to collapse completely. If we can't find a way to take care of this we will have this problem every time Jessika gets sick. Oh and this problem has nothing to do with the SMA, just a completely separate issue, poor baby doesn't have enough to deal with as it is :(


April 2nd 2012

We are sorry for lack of communication..

unfortunatly after we write long emails and messages to post on her .. the hospital pc freezes and we lose it all.. long message lost to lisa marie, and long update here lost also..we will try again but it took me over 20 min to write this.. needless to say a great big thanks to everyone who attended the fundraiser, and to those who couldnt attend and donated to Jessikas fund by the button below..we will thank you asap on the thanks to donors page as soon as we can ..for now thanks to Alana burns for her generouse donation.. i have to go and save this before i lose it.. more updates soon we promise.. for now Jessika still is improving slowly and the hospital want us out asap even if she is not ready.. but we are sensible and will do whats best for Jessika .. her right lung is still the same ( fully hyper inflated) but the left collapsed lung has opened slowly each day.. we go for a ct scan at 4pm we hope and may have more info after that..

March 26-27 2012

Still in the hospital after rushing here tonight at 7pm..its almost 1 am here now and i am goingt o try get 2 hrs sleep then Eva.... Jessikas left lung has totally collapsed.. its touch and go tonight.. we are so exausted we are not sure if we can go through this .. but we are here and by Jessikas side 100%.. she has slept mostly since we got here.. and the drs say she is doing a lot better than the expected given the severity of the collapse..  we are not allowed to do anything or give her any thing till morning .. we have to wait and see if she stabalizes by then.. they have no idea what they might do since its causing other complications.. we are hoping to knwo some more tomorrow.. we are lucky she made it to hospital and that we called for the ambulance when we did.. all we can do now is pray..

March 26th 2012

Even though Jessika is sick, again, we are trying to be positive.  We moved Jessika into the bigger of our two bedrooms and moved the boys, and all their stuff, into the smaller room.  It seems to work better, we have room now for all of Jessika's things to go inside her own room (a lot of her equipment and toys were in the middle of the living room)  and all the boys' stuff fits in their room.  We hope to get them a bunk bed sometime soon to make it even more cozy! 

A lot of things have changed for Jessika in the last few months, as is normal for developing children!  She speaks and communicates far above the normal two year old level and is able to ask for the things she wants such as "more drink" or "watch tv" "watch finding nemo" or " watch happy feet two" specifically.  She can also ask for "more suction" and can ask to have her mask on or off depending on how she feels.  She tells us when she needs her diaper changed and when she wants something that she likes "apple" which she likes to hold, "chocolate" which she likes to eat or she asks for some of her favorite toys "elie" for elephant, "big" for big bird, "cookie" for cookie monster, "mister Rabbit" for her cuddly rabbit.  She sings and talks through all her favorite movies and will act out scenes by herself, in her bedroom, in the mornings while she's waiting for us to get out of bed and come and see to her!  Many mornings we wake up to shouts of "Nemo! Nemo! Noooo!"  and "Help Daddy!  Help me!" since Finding Nemo has become one of Jessika's favorite movies. 

Jessika's favorite things; Food: chocolate, honey, cookies, apples, bananas, cheese.  Although she has, since the end of December been struggling a lot more to eat food by mouth, to the point now where all of her nutrition comes from cans of formula given to her through her G-tube and she only gets a few small tastes of other things.  She doesn't drink from a bottle anymore, instead we give her drops of liquid (water, juice) from a small syringe.  But she still loves apple juice, blackcurrant juice, and Daddy's special tea (she started drinking this week through her cold, a Ricolla lozenge dissolved in water). 

Jessika's favorite animals?  She can name and loves so many it's hard to tell which is her favorite but, if I had to name one, it would be the Elephant (Elie), but she likes monkeys, birds, chickens, cows, sheep, pigs (she sees these at Quinn farms whenever we walk over there, which is almost daily when the weather is good and she is healthy of course), tigers, giraffe, cats, dogs, rabbits, frogs, turtles, penguins, sharks, elephant seals (elie seal), fish, etc...  we can't wait until we can take her for a trip to Granby Zoo this spring or summer, I think she will love it!  She really liked going to the Biodome last year to see the Penguins. 

Jessika loves music and will pretend to sing along with almost everything and she dances with her hands and also with her face, she moves eyebrows up and down and wiggles her eyes and nose around!  So Funny!  We ordered her an Elmo CD and received it this week, from New Zealand, called Elmo sings my name and he interacts with Jessika through the whole CD "Jessika, won't you tell Elmo how to get, how to get to Sesame Street"  and "Tingaleeo, dance Jessika dance"!  She really likes it and I'm sure she'll be singing along with Elmo as soon as she gets better!  

Jessika's favorite TV; Finding Nemo, Happy Feet 1 and 2, Tangled, Dumbo, Caillou, Dora, Curious George (the TV series not so much the movie), Beauty and the Beast, Babar,  Sesame Street, Word World, all the skits on Kid's CBC with musical guests singing along with Sid, Patty and Mammy Yamma, the Lion King, etc...  yes, ok, maybe Jessika watches a lot of TV  lol

Jessika loves her brothers whom she asks for by name, Christian and Joshua.  She asks to see Oma now when it's been a few days since she's seen her and everytime we drive past a Tim Horton's says "Oma! Oma! Where are you?" (so we told her Oma lives at Tim Horton's).

We've said it many times; 85% of the time Jessika is happy, full of life, laughter and chatter.  She makes everyone smile!  But then there are the times when she's sick, when it breaks your heart to see her so miserable, struggling to breathe, unable to speak and it's in these times, when nobody else sees her, that me and Jeff have to be at our best and beyond;  where we have to work our hardest to keep Jessika alive with us no matter how tired, or how stressed, angry, or depressed we are.  Of course we will be angry when she gets sick, angry that no matter how hard we try we still can't keep her safe because we can't have complete control over every situation, over every person, unless we keep Jessika in a bubble and stop her from living this beautiful life that she's been given. 

She is an angel and an inspiration!  God has given us the task of watching her grow, loving her, protecting her, teaching her and sharing her with the world so that she can teach, inspire and, above all else, love each and every one of us in turn! 

March 12th 2012
We went to hospital again, and had another x ray. Wont know the results for a while, since the Dr was not there to look at them and we didn't want to stand around all day when everyone inc hospital staff were very sick and most coughing and sneezing without even covering their mouths.. so stupid to see. and we were there 2 hrs which was enough.. we all were wearing masks as per usual on hospital visits.. and on our way home we got some more crazy news.. the children christian was around while under the watchful eye of his grandmother have now confirmed hand foot and mouth disease... i mean who in their  mind lets a kid who has to come home to a child like Jessika near someone knowing they have a fever of over 39 degrees. crazy or what.. now we hope and pray that he didn't bring it home with him ..

March 7th 2012

Had follow up xray today...there's still a blockage in the right lung but it has decreased in size. As long as the block is there we are at risk of hyper inflation again. Now that the right lung has moved out of the way we can clearly see that the left lung has a significant collapse in the lower portion (about one third) which we will have to work on to get that filled up again, if we can get t...hat filled up again. Anyway, although we are not even close to being in the free n clear with this, the plan to do a CT scan and bronshoscopy has been put on the back burner. We go back to the hospital on Monday to do another Xray, as long as things don't get worse before then. We are at home, we have all our equipment and we know what to do so we will do our best and keep praying that our sweet little angel makes it out of this most recent threat/trauma/challenge!
March 5th 2012

We're back home now after spending the weekend in the ICU. I'm too tired to go into detail right now, I'll probably post something more in depth tomorrow for those who didn't receive the email I sent out yesterday. I'll say this though, the worst is yet to come... we have a big problem with potential for fatal results if not taken care of...we'll be back in the hospital on Wednesday, probably also on Friday and most likely we'll be going back for another two+ day stay in ICU sometime early next week for a procedure called a bronchoscopy. Anyway I will explain more tomorrow, I'm exhausted emotionally, physically...wish I didn't have to go and do laundry and dishes now...alas it seems the maid quit while we were in the hospital

March 3rd 2012

So, we have been in hospital 24hrs now and should be her for a lot longer, Jessika has been sick since new yrs day, but had a great two weeks in the middle of february when she was better and gaining strength. unfortunately due to lack of interest/ care/ responsibility and giving a crap about anyone else Christians father let christian around a very sick child living with him and ...never told us, neither did christian for that matter but he is only 10. Jessika then got the same illness we are sure, followed by christian and Joshua ( who were together for a day after christian got back) now its been 12 days of sickness for Jessika, the sickness has been progressing well in stages getting better. We deal with almost everything at home as you know, but we had an appointment set up for a Neuro clinic where we see ALL the drs involved with Jessika about once every 6 months, we were debating not going since we didn't want her getting any sicker from the hospital, but we came just in case it was anything worse developing. And there was.. it seems she may have a partial blockage in the middle chamber of her right lung. this has expanded beyond belief and has moved the lung to the far back left of Jessikas body and is crushing her left lung, all this means that we get air in ( like a balloon) but don't get all the air out ( since like a balloon the passage gets smaller as air escapes) eventually like a balloon the lung will pop, making air go between the lung and the chest wall causing issues for the lung to expand again and pain for Jessika. At that point she would have to be intubated ( tubes put down her nose and throat direct to the lungs ) and vented ( a hole in her chest to let the air out) this is very dangerous for Jessika to be intubated there are such high risks that they wont be able to get the tubes out without her dying ( its a high % they die) even then it means a Trach ( hole in the throat .. no more speaking and so many more problems and infections .. not a good way at all.. but alive) unless we can break down this blockage with our usual routine and usual medications ( plus one new one like the one we have to loosen mucus but stronger.. all coming with other dangers and side affects such as internal bleeding.) if we can remove it the lung should go back to normal..
You could say my god she is so unlucky.. but imagine if we hadn't come in and it exploded at home.. NO we are so lucky .. right place right people .. right time..
They reduced the pressure on the bi pap ( breathing machine for night that she is on all day now) because imagine we are actually putting air in while we do our normal routine with a lot of pressure ( no choice though) NOW .. good news.. since the x ray yesterday .. the one this morning showed not only no growth of the lung but also a slight decrease in size. we are here 24/7 .. we need prayers , help and support..
i will have to go home ( an hour away) to get some clothes and food since we cannot afford to eat local take out.. Jessika was very awake all night till 4am .. and is now only sleeping .. she was demanding a drink driving me crazy from 10pm till 330am.. ( my shift..lol) and of course i was giving her a bit of a drink..
she hasn't woken up today .. but we will keep you informed how she is doing.. if it continues to go down.. even if in high danger they may send us home ( don't get crazy.. its so dangerous here.. most kids get secondary infections from here.. and that would finish her.. and we have ALL the Equip at home and Training.. even oxygen and all the machines.. just not something to do if lung pops) but the cannot keep her here for the rest of her life if it goes up and down forever.. :-) the Dr also said we have no real idea that it is a mucus plug.. but its 99% sure.. ( they don't actually see it) and it could have been there 6 moths or 6 hrs.. its possible she gets them all the time..?
all we know is Eva noticed Jessikas chest get bigger on the right side about 5 or 6 days ago.. and everything points to this being recent.. and that she may just be prone to plugs in that area since it is the longer thinner air way of them all.. that's bundles more info and back info on this .. but you got the main gist of it. our love as always goes out to you all .. and we hope to see it returned..
Jeff, Eva and Jessika..

 

January 26th 2012

So we are finally just a couple of days away from Jessika's 2nd birthday, the milestone that we were told, in the original prognosis, that Jessika probably wouldn't reach.  We're stressed, we're scared, Jessika has another cold so that doesn't help, but we're so excited to be on the verge of celebrating her birthday with her!  Things haven't been easy, we have been struggling financially, as I know so many others are as well, Jeff has taken on a second job and I will start a 30 day training course in a few days so that I can work from home and bring in an income as well.  I'll be answering phones for Rogers wireless, from home. 
Jeff has been working so hard to keep our heads above water and I have my tasks of taking care of the household chores and taking care of Jessika, thankfully Christian can fend for himself, mostly.  But it's time I started earning some extra income for the family as well, something substantial.  So I'm keeping my fingers crossed that this will work out and
I'm hoping for the best 2nd birthday possible for Jessika, and the best 3rd and 4th and 5th, etc... And thanking God every single day for the love and support of my husband, my kids, my family, my friends and everyone, everyone, who has supported us through this.  Jessika, you are an amazing, wonderful, special girl and I love you so much, I can't imagine a world without you.

 Dec 18th 2011

 
We have had an up and down beginning to the winter with a few bouts of sickness ( thank god simple colds but still life threatening ) that Jessika was able to fight off well. She is annoyed at not being able to go outside more, but is still very happy playing with her mum and brothers at home.
We are awaiting insurance approval for a Kangaroo pump to feed her in the night through her tube since now she needs that otherwise its like fasting and her remaining muscles will eat themselves, at the moment Eva is getting up 3 times a night to feed her while she sleeps. The medical bed should come through early next year from the CLSC (clinic) so that's a relief, and Jessika got her new bigger AFO's ( ankle foot orthotics) so she is more comfortable wearing them during the night. I have managed to adapt a toy using headphone jacks and the button provided by Marie Enfant's Ludoteck program ( lending out similar toys 2 at a time) and she loves it, it's a baby einstien music/lights and colours toy that she can activate. such small things bring a whole new dimention to her life. I have a second job in the works ( training at the moment)  for support at a cell phone company which will enable me to supplement my other income and it's working from home so that would be great if I'm capable, I'll let you know :-)
That's about it for now.. her vocabulary is growing daily and she can understand so much of what goes on around her, she's a real smart cookie.. and soon in January she will be 2yrs old.. and that's something we were led to believe would never happen..
so thank you everyone for your continued support and friendship.
Lets have a great x mas and a fantastic 2012.
 
Oct 26th 8am - 2pm
Jeff has been doing most of the posting, with me editing and spell checking, so I guess it's time that I write a little something myself. Jeff woke me a little after 4 so, although I didn't have any "sweet dreams" I did get a few hours of exhausted sleep. Jeff is taking his turn now and has definitely earned it. Jessika is now sleeping soundly after I gave her 2oz of liquid compleat (g-tube formula), which she has so far managed to keep down. She's awake now so I will give her another 2oz of compleat, maybe a quick bath if she is doing well and I will continue this later. 12:30 pm She had a bath so she smells clean again, she's doing alright for the moment although she is miserable and not at all happy about having to be on continuous BiPap but it's for her own good so I won't feel guilty for her misery. She's keeping everything down that I've given her so far, 7oz so far plus some water and some pediatric electrolyte solution to keep her hydrated. We've asked the respiro therapist from our local CLSC to come and have a listen to her lungs to be sure she hasn't aspirated anything that came up last night and we're waiting to see if she will come. We hate having to drag Jessika into the hospital if we don't have to but if she's aspirated then we may need to go into the hospital to have an xray to see how bad it is. I don't know what they would do to help her if she has aspirated, if anything, so I don't want to do the hour long drive for nothing.
Anyway, all that to say that Jessika is doing alright at the moment.
In other news, Jeff is right to say that things are becoming increasingly difficult for us at home, for me especially probably because I am so reserved to begin with and it really takes a huge effort for me to get out there and socialize with people. Now it's to the point where the idea of going out and knocking on a neighbour's door, to introduce myself and try to promote Epicure so I can make a living, stresses me to the point where I'm in tears. And I really don't know what to do about it. Neither one of us has very many friends and I don't stay in touch with mine very well at all so we really don't socialize very much or very often. After what happened yesterday we definitely will not be going anywhere together and leaving Jessika with anyone other than ourselves for a very long time, if ever. Of course we wish we had more family around; Jeff has no family here and my family is so small and widespread. We really only see my mother once a week, my brothers are busy, one with school and the other with his own family. I don't expect any one of them, or anyone else, to drop everything to be here with us because we are capable of dealing with this on our own, but we're driving ourselves and each other crazy at the same time. So we do wish we had more physical help, better support networks, more friends and family who are willing to come and visit with us to relieve some of the stress, more human contact, etc. It was a lot easier when we were closer to the city, when we were in dorval, when we were closer to everyone who has helped us out; David and the ICT school, Lisa Marie and the Dorval elementary school community, all the people that we consider friends and we are so grateful to for all the help we have already received. But we love living out here in NDIP, near the farms, away from the airport, we're just a lot more isolated than we ever have been.
Oct 25th 26th 1245am
Well its taken the past 3 hours of me holding jessikas hand while she grips my finger tight just to get her mostly asleep, even then she was crying through most of it since 10pm. Wow i am exausted allready ( my shift) Eva i hope is having sweet dreams a few feet away, it means so much to be capable of staying at home and knowing what to do at the right time (mostly) and not cooped up on a noisy hospital ward with nowhere to sit or comfortably watch over our angel, not to mention the risk of furthur infections there.
We think Jessika may have picked up a bug..? stomache flu or a cold who knows.. it could have been from my friend Alex on thurday, or from when we went to see Eva's uncle on his farm saturday or any of the gas stations i filled up at along the way ( even though we carry a truck load of sanitizer) or a million other possible causes or ailments that eventhough we are so precautious about avoiding still could get through our tough regeme.
who knows.. she will always get sick, and we must always save her and keep her strong and safe as long as her quality of life is as amazing as it has been. gotta go wipe the drool pool foaming at her mouth . back now...lol happens every night every 10 min because of the bi-pap.
i wish we had more support.. i wish we had more family... i wish we had more friends.. you all are either too far away( all my family and old friends)/ dont want to see us and have cut us off ( michael my son and Alain Eva's step father) or are so busy and wrapped up rightly so in your own lives that to spare us one afternoon every 6 months is too much to even dream of( Eva's brothers and all her friends and most of mine). The people we do see we can only say from our hearts we love you and thank you. Its even difficult for eva's mother to see Jessika, Eva and christian since me and her step father will never see eye to eye. Not that i have ever stopped her mom , infact i push eva out the house for bfast and family do's or just to phone them all as it is even if she is against it totaly.
family is one of the most important things we have in this world and we should never let go of that lightly. its a shame i seem to be alone on this subject among mine and eva's (mine being my kids in UK).
We are house bound most of the time, i dred going back to work in a couple of weeks after my compassionate care leave and not being here with eva to help her, and i fear she definatly if not us both are becomming hermits, and not by choice but by lack of human intrest from everyone else. oh woe is me.. whatever its late...lol
Oct 25th 8pm
Well we had 4 hours of Jessika seeming to get better( and wondering what caused it in the fist place ) but not wanting to eat or drink then 4 hours of constant vommiting, very thick mucus filled vommit through her mouth and nose its silent and blocks her airways completely and the oxygen/heart sensor dosnt repond to tell us its happened at all, maybe it would only after we lose her? there is such a delay. she is struggling through it and so are we, its going to be a tough night for us all.. we will try update tomorrow if we are not too drained
October 25th 2011 3pm
We just came within seconds of losing Jessika.. the nurse came round for the weekly hour care and Eva and me decided to go out to the next house and while there in the first 5-8 minutes we got a call from the nurse to tell us to come quick..
I ran down the hill near our home, and burst in the door. Jessika was blue and purple, in her standing frame and not breathing, her head was bloated and twice the size it normally is. It had been a while since the nurse had seen any sign of breath or life. i jumped in to the area and tilted back the standing frame, switched on the cough assist and gave her one shot to try and dislodge whatever it was. At the same time i was considering the possiblity that the nurse may have done something to her ( it happens) but i saw clearly this was not the case. I saw no sign of life and continued to work on her and at the same time ignoring the fact she looked like a bloated corpse with no signs of life not even a twitch of the eye.
One time the cough assist moved something and by that time eva was next to me working on her, and we saw a sign of life almost 10 minutes since what we assumed was a blockage. after that i got the sensor attached to see her vitals and she started to get a better colour in her hands and face. all her vitals seemed high mid 90's and she started to try and make a noise at least to try to breathe. we kept working on her to unblock and suction anything while the nurse stood by terrified, she is not an ER nurse just a helper that comes to the home to watch and assist. then at last she was back, unblocked and stable after 30 or 40 min of work. we put her on the bipap assisted breathing and the nurse left.
We have no idea what caused it, or if we will lose her in the next few hours or if it could have been prevented since there were NONE of the usual signs of sickness in advance, no elavated heart rate, no signs of congestion or fever, in fact we have just started to feel so stable and adjusted as mentioned on the 24th that we were connecting with the world again.. we will still go forward with our lives but i dont know if we will ever leave Jessika alone ( without myself or eva ) ever again... this was the closest and the longest she was in the arms of death.. and we hope to not go there ever again ( a bit of healthy denial we know) thats all for now.. im getting back to it.. jeff
October 24th 2011
Since September ( in the news tab on the left) when i last had a chance to update Jessika's page we have been mostly doing work in the garden before the snow comes, when we have had down time its been just to zone out and spend family time with the kids.
Joshua ( Jessika's brother) has been away in mexico and now in spain and will continue to travel off and on with his mother until christmas, and christian ( one of jessika's other brothers) is doing well at home and at school. Jessika is doing very very well, she has been sick a couple of times in the past 2 months but it makes a world of difference being able to look after her at home instead of running in and out of hospital.
Jessika loves using her I-Pad type toutch screen that we bought her a few weeks ago, she can play onthe musical apps and also watch all her favorite shows when we are waiting at appointments.
We usually see the sickness coming and then we suction and cough assist more regular and as needed as well as feeding her by mouth as much as possible and topping up by liquid food (the one called compleat since it is almost, if not all, natural ingredients) through the G-tube ( directly into the stomach).
Then, since she is so strong, she is pulling through normal colds in two to three weeks. She has a very large vocabulary now and can make full sentences, we see loss of movement in her legs, arms and head more and more everyday, but she is fighting the loss with renewed vigour and working with us to keep a great quality of life. She is like the rays of sun bursting off a cloud with her never ending smile and her bright blue eyes that light up even the darkest day. We are more settled now in our new place after 8 weeks, and are now starting Epicure spices again for anyone who would like to help us out with placing orders ( Eva gets 25% commission) we would greatly apprieciate it, just contact Eva or myself evadeblois@gmail.com jjparry2002@hotmail.com Many thanks, the Spices are amazing and great quality especially the spanish paprika.. here is the web site to check in case you cannot get a catalogue from Eva http://www.epicureselections.com/en/ it's bilingual so good hunting.. thats all for now till next i get the chance to update.
P.S. check out the new photos and videos that were posted on the photos page; there are photos of Jessika in her new standing frame and videos of her singing and playing. We will be posting more so check back often to see what's new. Thanks!
 
14 September 2011
Jessika is again sick, the simplest of colds from one of her brothers has floored her again, mucus plugs and constant supervision to pull her back over and over again until the inevitable.
Why ... Why do we do it, .. If you ever met our angel you wouldn't have to ask, she is smiling constantly even through illness, she is only 21 months and can speak a wide variety or what can only be described as orders for me and her mum to carry out such as " word world" her favorite tv show or" elly" when she wants us to do noises of different animals with her, she knows a lot including monkey, tigers, dog, cat, sheep, duck, fish and more and can recognize and copy the sounds even without prompting. she is amazing every single day.. and we love her so much that to sacrafice our time and effort is the least we can do.
We managed to find a home, we moved 4 weeks ago after the nightmare my wife's step father put us through in the house we were in. now we are settled again and couldn't be happier. i am sure Eva will add more later when Jessika stabilizes.
sorry it took so long to update you all, but its been a crazy couple of months.. i really hope to get some more photos and videos of Jessika up on facebook or here soon.. thanks and chat soon.. jeff

July 03rd 2011
We have been out of the hospital since 3 and a half weeks and Jessika has gotten back to full strength. It was very nice to get out yesterday to a Garden party held by Lisa Marie who was co organizer of Jessika's fundraising night in April. Canada day we spent in the Biodome and botanical gardens in montreal. Jessika loved it!especially the penquins (one of her favorite movies is Happy Feet). I was telling someone at the party, who had also been at the fundraiser, that it's only because of people like him, and his wife, that Jessika was still with us; because the machine that alerted us to her crashing was bought with the money raised on that night and wihtout it, during that situation, we would not have had the warning that she was in distress that gave us the chance to react quickly enough to save her life.
We are busy house hunting at the moment, since we got the news while we were in hospital that we could'nt afford to take on the place we know live, we are hoping to stay close to Dorval where Eva, myself and our children have settled in the community but the prices are a bit too high. It seems more likely we will move off island; possibly Laval or further west like Ile Perrot or further. Our main concerns are to be near a hospital, a school for christian, somewhere I can work in English and not too far away from Joshua, my son in Quebec city.
We hope to move around September and you never know, we may be your new neighbours soon...lol
 
June 6th 2011, 12:05AM
Well Jessika is doing ok for the past 4hrs; it's my shift (Jeff) to watch over our Angel. We had to jump on her to bring her back from a plug again around 8pm; It was like deja vue, happened just as suddenly and with as little warning as last Saturday. Needless to say Eva and myself were on it the second we saw her unable to breathe, even before the machines noticed, and were well on the way to bringing her back up from the mid 30's of O2 percentages by the time any nurse was in the room. Eva is so amazing at what needs to be done and the nurses just stand at a distance watching with amazement the speed and skill and techniques we have had to develop to save our daughter. They lost a young boy about 6yrs old today, we were here seeing it all unfold since last night and its all open except curtains so we heard and saw EVERYTHING right to the end. So so sad, and he came in with the exact stats as Jessika, we are so lucky every moment it could easily be us going through what we watched. We are strong, determined and have the skills needed to keep Jessika with us and with a quality of life some even in good health would envy... but its only possible and made easier by people like you... our friends and family who have given and continue to give so much .. and ask for so little in return.. we honestly love you all..
Thank you ..xxxxxxxxxx
3:45 AM
Yes, last night reminded us that we are not yet clear of this virus and that we need to continue to be just as watchful as when we first arrived in the ICU. It was scary to see her dropping again and it's natural to panic a little but we did act quickly and managed to clear the secretions immediately. She has been sleeping soundly ever since.
Life in the ICU is not easy, for sure, and Jeff and I are not willing to leave Jessika's bedside for longer than a few moments most of the time, so, as Jeff mentioned earlier, we are sleeping in shifts; I try to sleep from around 9pm until 3am and Jeff from 3am until about 9am. This way we each get about 6 hours and then have the option of napping during the day. I'm surprised we get any rest at all considering the parents' room only has a couple of sofas and a few arm chairs to sleep on and, often, contains parents who are not always so conscientious of others, but we manage!
Of course we still have to take care of ourselves otherwise we cannot take care of Jessika; we still need to eat, sleep, go to the toilet, etc... and it's hard because we are so aware that she is fighting for her life a mere hundred feet away and we feel so far, when we are in the other room, so helpless. So it's great that Jeff and I are able to support each other, to be solid, emotionally supportive and understanding of the situation that we are in. I'm sure it would be so easy for the stress of the situation to tear us to pieces, maybe it is.
Jeff has been great at making sure that I'm as well rested as possible and I really do appreciate that, more than anything else, because I just don't function well when I am tired and when the adrenaline wears off. Needless to say, we will be very happy to be home and able to sleep in our own bed once this is over and we will work even harder to be sure that we don't have to come to the ICU again...or for a while at least.
 
June 5th 2011, 3:23 AM
Jessika is really doing so much better already. As I said in the last email, she's surprising everyone! On Friday she did three sessions off the ventilator (BiPap); two 1 hour sessions and once for an hour and 45 minutes. She was tired by the end of the day though, needed an extra round of chest physio after having gone to bed, only to get her oxygen saturation up into the mid 90s, where we prefer it to be. She slept soundly the rest of the night and woke up bright and early, fully refreshed and ready to start her day, at 5am on Saturday! And she had a great day; 5 "sprints" off the ventilator between half an hour and an hour each, she ate breakfast, lunch, supper and a bedtime snack so we took her off g-tube feeds for the time being, she's been off oxygen completely since about 4:30pm and doing amazing and her BiPap pressures are just a little higher than the pressures she was already on at home.
This isn't a "full" recovery but, as far as her doctors are concerned, she's only a few days away from going home. We'll still have a bit of work to do at home to get her back to 100% health but we've been doing everything here in the hospital anyway so the doctors are confident that we can handle it!
We were expecting that we would be transfered from the ICU down to the medical rooms on Monday but, due to some bed shortages, we may end up being sent home directly from the ICU and we're still expecting that to happen by the middle of next week.
So, fingers crossed but things are really looking up for our little superstar!
Thanks for the continued support, we can't wait to be home

 June 3rd 2011

As of Thursday morning, Jessika has really started to make a fast recovery. The virus is losing it's grip and she's fighting hard to get better. The doctors have lowered the pressures on her ventilation and lowered her supplemental oxygen as well. She is still being tube fed but, as soon as she found her voice on Thursday morning, her first words were chocolate, chocolate and chocolate. Needless to say, we gave in and bought her some chocolate. She also ate a few spoonfuls of applesauce during one of two half hour sessions where she was taken off ventilation entirely. she was awake all day, only taking one two hour nap, and has been sleeping soundly, without disruption, all night. She is doing well, very well in fact; the doctors, nurses and staff at the hospital have been amazing and most have been working with us, and letting Jeff and I take the lead, to get Jessika to where she is now, but many of them had doubts about where this situation might go and expected the worst, and so they are all quite surprised and very happy to have been wrong about the outcome of this situation. Needless to say that it has helped us so much to know that we have so much support and commitment from so many friends in the community and that everyones warm wishes, thoughts and prayers have given us hope and strength to fight this battle. We are exhausted, still sleeping in shifts, barely leaving Jessika's side, but our dedication is having amazing results and we have high hopes that we will be back home within the next week.
 

June 1st

We've been at the hospital since saturday, with Jessika. This is my first time coming home since then, and going online to check messages, etc. Jessika caught a cold, rhinovirus, and, due to the increased mucous and an inability to cough effectively, ended up with a mucous plug that stopped her from breathing. She had an episode on Saturday, which was very intense and scary as hell, and we had to act fast, do some mouth to mouth, suction, etc. Anyway, we got her breathing and brought her to the hospital. She's had 4 other episodes the same, in the hospital, since then but only one in the last 60+ hours. She is improvong as the virus eases off and the doctors have started to wean her off oxygen, slowly. It's been a rollercoaster ride and we've not reached the end yet but we hope that, by next week, we should be home. For now though, we are still in the ICU, not leaving Jessika's side. I will try to post again as Jessika's situation changes.

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 January 14th 2011

Jessika's surgery is being postponed at least one week due to her cold. So we're looking at having it done before the end of the month. The hospital also needs to have a bed in ICU available for recovery. while we're in ICU respirology should be able to take the steps necessary to get Jessika a respirator and pulse oximeter (to check oxygen saturation in the blood) to take home with us...still don't know how or when we'll get the cough assist but we got the suction machine on Tuesday when I went into hospital to check Jessika's stats and respiratory functions due to the cold. We have a video fluoroscopy appointment on wednesday next week to check her swallow; they coat her food with berium, feed it to her and then take an xray to make sure none of the food is going into her lungs. It's good to know whether or not she is aspirating as this can lead to resp infections. she's getting over the cold, a little faster now that I can use the suction machine and we continue to do chest physio every few hours to get her clear. we absolutely don't want to be postponing surgery again. Jessika and I went for our first mom and tot swim class this week, Jessika wasn't so happy for the first half but, by the end, she was getting into it...especially once we started doing some singing, clapping and splashing since Jessika can actually do these things and enjoys doing them! As for the appointment with Dr Bach, well it could have gone a lot better but at least we got his diagnosis which is that Jessika is a mild type 1, a lot better than a severe type1, but she's still just as much at risk of complications from resp infections. He also gave us some hope, by telling us about some of his older patients; brothers 13 and 15 years old who were much worse than Jessika at a younger age and are still doing well, a 17 year old patient who is still enjoying life, and many more patients who are living longer.

 December 8th 2010

 Yesterday we did a hospital day; crammed as many appointments into one afternoon as were available and necessary.  So we met with the respirologist and physiotherapist together to learn how to do chess physio (clapping and vibrating Jessika's chest, sides and back along the rib cage to loosen mucuos and fluids in her lungs) and breath stacking (using an ambubag(bag used for CPR)that has been modified we push air into Jessika's lungs, like when you take a deep breath in before a cough, and then the air is sucked out when we remove the mask and break the seal).  We learned that we will get the suction machine that we need, possibly on our next hospital day(dec 20th) and that we SHOULD get the BiPap machine (that we will use as a breathing aid for Jessika when she is sleeping) around the end of winter/early spring and that it SHOULD be covered by medicare.  We will need to do a couple of sleepovers at the hospital between now and then as part of the process of getting this machine.  We are still being told that the cough assist will not be covered by medicare but the respirologist will write a prescription for the machine and we will find a way to pay the $6000 cost. 

Next we saw the surgeon; we discussed the G-tube surgery and convinced the doctor that we want it ASAP, while Jessika is still strong enough to survive the aneasthesia, and the surgery should be scheduled within the next 4 weeks.  The surgery will last 45min to 1 hour, scarring will be minimal as they now make very small incisions for keyhole entry type surgery.  She will most likely spend 2 days in hospital for recovery. We will not be doing the Nissen surgery, to prevent acid reflux, as we do not think it is necessary and neither does the surgeon. 

Jessika and Jeff both had their flu shots done before we left the hospital, no adverse side effects so far apart from being a little more tired than usual.  Christian and I had our done on Monday with no bad reaction as well. 

I also got a call from the MacKay center on Monday telling me that we can pick up Jessika's new, adapted stroller on Monday next week!  Yay! 

Last week we received a flotation ring for Jessika (a gift from her Oma, my mom) to use as a swim aid for water therapy.  It goes around her neck, supporting her head and keeping it out of the water, so that her body is completely free to move in the water.  And does she ever move!  There's such a contrast between what Jessika is able to do out of the water and in the water.  I only let her do 30 minutes at a time so she doesn't get too tired but she enjoys it so much she would probably stay in the water for an hour without complaint.  http://www.waterwaybabies.com/

We have started, slowly, adapting the house for Jessika; the first thing we have done is to install a hand sanitizer at the front door along with a box of surgical masks.  Eventually we will need a different bed for Jessika; she does not need a crib because she cannot move to roll out of it and it will be easier for me to access her without bars.  We will also be looking into some carts/trolleys that we can load Jessika's machines,etc on so they can easily be wheeled from one area of the house to the other along with Jessika.  We will try to find ways to decorate Jessika's room and play areas to make them more interesting for her; pictures on the walls, hanging toys, etc.  For the moment we are doing what we can and always thinking of what we will need in the future.

November 30th 2010

Today we picked up Jessika's special chair(see the photos page) from the MacKay center in Montreal.  We also got a bit of good news: our application for the Otto Bock Kimba stroller was approved by RAMQ(medicare), the therapist handling our case has already placed an order for the stroller and, if we're lucky, we may receive it by Christmastime!  Next week we will be meeting with Marion(physical therapist) and Dr. Zilinski(respirologist) to learn about chest physio and to find out about the progress of our applications for the cough assist, suction machine, BiPap and oximeter.  We will also meet with a surgeon to discuss having Jessika's G-tube put in.  Another bit of good news that is doctor related; We received a reply email from Dr. Bach, he specializes in pediatric neurology and is a leader in SMA treatment in the US and worldwide and has developed the NIV(non-invasive) protocol that involves all the machines we are asking for at the moment.  He runs a clinic in New Jersey but visits Montreal occasionally and has agreed to meet with us when he visits Montreal during the holidays!  I'm very excited to meet a Doctor who has spent more than 20 years researching and treating SMA.  He has helped many families and proplonged the lives of many SMA babies/kids.  We are really looking forward to meeting him!

 Sleep study: 17th November 2010

Last night Jessika and I stayed at the Montreal Children`s Hospital for a sleep study.  This study was set up to assess Jessika`s respiratory abilities during sleep and is one necessary step on the road to acquiring the Bipap machine, suction machine and the cough assist. 
We arrived in the sleep lab just after 7pm.  Our room was big enough for one hospital bed, one hospital crib, a couple of chairs, a desk and some equipment. It was cozy enough, quiet and private.  Our nurse, Jacinthe, was friendly and helpful.  Jacinthe and I spoke about Jessika`s bedtime routine, I filled out the necessary paperwork and then Jessika needed to be prepped.  Jacinthe took some measurements and carefully marked out 23 spots, with a red crayon, where she would put electrodes on Jessika`s chest, face and head.  These electrodes would monitor Jessika`s sleep, to be sure she reached every sleep stage and to have accurate results at the end of the study.  Then, with a qtip, Jacinthe cleaned each area to remove dead skin cells and oils.  Afterwards each small electrode was glued onto Jessika`s skin.  Next an oxygen monitor was affixed to Jessika`s big toe, a CO2 monitor was stuck to her abdomen and two long, thin pieces of stretchy pink fabric were wrapped around her chest and abdomen to monitor her breathing.  Our lovely nurse bundled all the wires up and tucked them comfortably out of reach and taped shut the front of Jessika`s sleeper (I brought one with a zip...next time I`ll know that snaps are best!).  I was able to cuddle my baby girl and nurse her before Jacinthe affixed a nasal oxygen monitor and we tucked her into bed. 
This all happened before 9pm.  Jessika fussed for a while and woke up a few times in the first few hours but finally, after 2am, Jessika found her deep sleep and dozed soundly until almost 6am.  All the electrodes were removed, the monitors and pink bands as well and I was able to take my sleepy little angel home. 
The data that was collected as a result of this test will be compiled and we should know the results when we meet with our Respirologist on the 20th of December. by Eva

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