Another season…

Do you ever get that feeling that the other shoe is about to drop? Well this feeling comes to us when life has been a little to calm. Granted we’ve had a difficult year with many things… Jaxon getting trached, multiple surgeries to work on getting that trache out. Hip surgery which lead to a full body cast for a while..then the rehab of that. But the last 3 months have been rather calm. No doctors appointments just got to enjoy a nice calm summer….

But the other shoe did drop a few weeks ago!! My wonderful husband was offered an amazing job that he has accepted!! He will be starting on September 22 which means we’ve been working like crazy to get our current house ready to sell (all those 5 min projects that you learn to live with)…not to mention more house hunting for a new place. Oh and of course the dreaded packing up!!

We are praying our house sells quickly so the kids and I won’t be to far behind Aaron…don’t need a repeat of how we moved here (thankfully I’m not pregnant this time around 😉 ) So prayers are very much welcome in any way shape or form!!!!

So welcome to the next season of the Giesbrechts!!! Although we are super sad to be leaving here now that we are feeling settled and have met some wonderful people, we are very excited for the opportunities that come with moving to another city!!!

gearing up

I’m going to start off with the happy news!! As I have posted on FB Jaxon is back at school!! He has the most wonderful EA who is more than qualified on all accounts!! So thankful the school found a french speaking nurse who is also an educational assistant…never dreamed it to be possible!! He also has a nurse that comes during the lunch hour to sit with him so his ea can have a break…As per usual Jaxon and him are best buds, they love hockey among many other things! He is thriving and SO HAPPY to be back with his friends!

We had a wonderful christmas this year. My mom and Bill came and surprised the kids Christmas morning. The look on their faces was priceless!!!! It was a nice quiet break enjoying the time together. Even daddy had the 2 weeks off…so nice to just relax and not think about anything but all the food we consumed!!

Now on to the “gearing up”. Its now only a few days away. Jaxon is having a hip reconstructive surgery on Tuesday. He is going to be in the hospital for a week then once we figure all the logistics out, transporting him home, and figuring life out with him  in a full body cast for 12 weeks. Going to be a long haul for us all and all the prayers you have are appreciated!! We are so grateful too that Aarons dad can come for a few days and help with the boys so we can both be with Jaxon at the hospital as well as our wonderful babysitter offered her time for the rest of the week to help as well!! So beyond thankful for all the support that has come our way.

And if anyone has any food tips for us that would be great too! 😉 living in a hotel with only a microwave and fridge will make it a little tricky!!!

Anyway thats the news for now!! I will share more post surgery to keep everyone up to speed!!!

Chera~

some progress

Its been a long haul since the last blog post I wrote…As of right now Jaxon still isn’t in school. The school he attends has been over the top awesome making sure he is being educated. They send an EA to come work with him every morning one on one and in the afternoons (not all) he Skypes with the class to have that interaction with his classmates.

Since we got home from the hospital back in September its been our goal to get him back to school. But there has been lots of discrepancies about care between home, respite and community! Aaron and I have been extensively trained to be able to take care of him in any situation. This training has to be completed before he is even able to come home. The care he needs for respite in our home is also a nursing level. But for some reason when it came to him being in the community (i.e.: school) was a lesser care. They told us he could just have an EA and if something were to happen 911 would be called.

We had a meeting earlier this month to try and figure out a better option for school as that was not good enough for us. He’s our child and needs to be safe in all environments especially school as its way more chaotic than home…This meeting that took place was suppose to be the one to get him back into school and we left no further ahead. Just feeling more deflated frustrated and angry. This in return equalled a couple of phone calls to the ministry of Education and Health. And all I can say is as soon as a big wig name is dropped in an email to some local people the phone call in response comes pretty fast.

Since that happened there has been a letter put forth for a nursing level care/supervision put in place for Jaxon to go back to school. That being said the next hurtle is going to be finding that person and getting them trained so he can go back. There is still a meeting (or 2) that will have to take place yet and a few details figured out once the person is hired….but its a step in the right direction. Especially when all we’ve heard from people on this end of things saying that him having a nurse was a pipe dream that could never happen….

And just to add to everything else that has been going on, we now have an official hip surgery date for Jaxon. This will be happening January 21. He will be in hospital for a week or so then home and in a full body cast for a total of 12 weeks. Its going to be another long haul with all this! But this surgery is necessary to keep him walking, and that is a very important thing for not only us but him!

Please continue to pray for us during this busy time, pray that they are able to find the perfect person to work with Jaxon in school! And please pray for the hip surgery to go well and all the aftermath of it as well, with the rehabilitation physio and every other little thing I can’t fathom at this very moment! And last but not least…pray for peace over our family. We don’t’ know the bigger picture of why things happen but we trust and know there is a reason!!

~Chera~

 

the pioneers

Today marks month one of Jaxon getting trached. And even though everything went quickly for getting him home from the hospital, things have come to a grinding halt to get him back to school.

Living in a smaller community has made some of these challenges more stressful for us…As Jaxon is the first trached child to come into the school division here, and honestly not to sure how many other little people have been through the area as a whole. So once again we will be the pioneers for the next person coming though!

We are currently waiting for some funding to come through, thats what the hold up is. …politics and money right? Its all about the bottom line.

The set back currently with all this is, some of the doctors  say that he only needs a health care aide in school with him. They are able to suction out his trache if needed…However, by law they are unable to do a trache change if a blockage happens. What they are allowed to do is take out the trache and wait till EMT were to show up. Leaving him without his trache (airway) and possibly unable to breath. What we want and what  is someone who is legally allowed to reinsert the trache if that were to happen so hes not sitting there unable to breath while they wait for EMT (or us) to arrive. We want to be able to send him to school without worries.

As you can imagine our stress levels are really high right now. Feeling beat down by the system here,  especially after our experience before (don’t get me wrong, all systems are flawed) but it feels like they are putting the cost of a nurse before the safety of the child…And its also been tough on us not having the support from family and friends as we did before due to us living so far away! We are doing our best to keep on trucking with a smile on our face…some days are easier than others!

Please continue to pray as we figure everything out. I was able to take Jaxon to school for a couple hours yesterday because of my wonderful neighbour taking the littlest man for me! He was so excited when we arrived…said “I get to stay here till 3:30?” He so badly wants to be back at school!!

(sitting in the hall so Jaxon could be in class yesterday)

All the hurtles

This morning I got to enjoy waking up and having breakfast with lots of laughter. Yes Jaxon is home!!! He was discharged from the hospital late yesterday after we had our teleconference meeting to start working getting things in place for him….also just to meet all the people involved in his care in the community!!

We are still waiting for a few things to be in place for him but the hospital was kind enough to lend us some equipment needed to have him safe at home!!!

Even tho Jaxon is now home with us there are still many things to figure out…and for us to learn. Being in a different province that has different rules and different standard of care has been challenging. In Manitoba everything was 100% covered to a province where here the bare minimums are covered and the rest is up to us to get. I know it will all work out its just getting to that point…

The next hurtle is getting my man back to school…for the sanity of all of us!! He was very teary today when we dropped off Nolan…he looked at me and said “school looks like its a lot of fun”. He loves school that much!!

So in saying all this, my next prayer request is to pray they are able to find a nurse quickly and get him/her trained so Jaxon can go back to school sooner than later!

Thats all for now!!!! Better get back to hanging with my guy!!!

Chera~

closer to home

Jaxon is one amazing little trooper let me tell you!! After his trache surgery he was in the ICU for 7 days! He managed to be awake thru heavy sedation and lots of meds, especially when the whole family was around to be with him. The doctor did his first trache change and all looked really really good!! Think he was most happy cause they let him get off his bed and he was able to hang with his BFF!!!

During this whole process we have been pushing and asking people to pray for us to get moved to the Lethbridge hospital sooner than later, every staff member that walked into our room heard that line! And yesterday that prayer was answered!!! so now instead of the 2 and a half hour drive to see him we are a 5 minute walk away! Yesterday he got all strapped in to a fancy stretcher to go for an airplane ride home!! And luckily for him daddy was on the other end as it was the company he works for who did the medivac!!

We are still working on a lot of details to get him home with everything he needs all set up from supplies to homecare and a person to be with him at school!!! Just trying to take everything one day at a time…the good the bad and the in-between!!!

~Chera

walking the same line

Well I don’t even know where to start. Its been such an up and down week in our journey with Jaxon. Sort of feels like we are going backwards to move forward again. If that at all makes any sense!

To take you back into our life with Jaxon, when he was 8 months old he was trached due to many weekends in the ER with him turning colors and not breathing properly. He had his trache for 5 years and 3 years ago it came out, he held his own and we never looked back. Till Thursday (September 4th) when we came to the city for an appointment with the ear nose throat doctor (ent) which ended up with being admitted to hospital and not allowed to leave. While we were in the appointment he had one of his breathing episodes that we deemed to be normal to us. The doctor however had a very opposite reaction of that not at all being normal. His words were “a very unsafe airway”….after a long conversation with things to do the word trache was taking the forefront of it all. Many many tears later, a phone call telling Aaron he needed to get here ASAP we made the decision that we needed to walk the same line as we did 8 years ago.

(some brother and cousin love while  hanging at the hospital)

(the waiting game)

(still all smiles before heading into the OR)

Tuesday night (september 10) Jaxon was trached again. Even knowing it was the right thing to do to eventually move forward again, its not been easy to digest. Entering into this life changing stage, taking away his independence. Very tough for all of us! Not to mention the fact that there are now other kids involved that need some sort of normal.

(post surgery..precious little man)

Thankful to all the people who have taken us in while he’s been in hospital and thanks to all the people in our community who have helped us out with the other kids while we’ve had to be away! There are just so many think you’s that need to be said…So THANK YOU

Jaxon is an amazing boy! He’s been so cooperative with everything that has been going on and I know that he will continue to charm the nurses and all people who will be apart of our “new” journey we are headed into!! Thank you so much for all the prayers they are for sure whats carrying us through.

~Chera

PS if you want to send Jaxon a little message the hospital has this special way for him to get it!! http://www.calgaryhealthregion.ca/ACH/pff/mail.html

Summer Lovin!

School is out and the summer has begun!!! Hot weather lots of time playing around in the kiddie pool and the boys are having a blast!!!

We will be getting our first set of company coming next week to kick things off!! We are pretty excited which also means I need to get my butt in gear and keep on painting…the basement reno is still on the go but getting closer to completion! (thank goodness…will be so nice to have the extra space for the kids to roam and make a mess of)

We’ve celebrated Emerson’s first birthday last month. Not to sure where that year went but it has come and gone and what a fun little man hes growing into! Getting more curious and playful each and every day!!

Also had the boys birthday bash last month to. Did it early as its easier to invite school friends! We did a super mario theme and it was a hit! the boys had a blast and it didn’t rain which was a bonus!!!

 

That is our life in a nut shell!! Just enjoying the time before summer gets busy with camping and our trip to the Peg for Jaxon to go to Movement Centre camp!! Also want to give a shout out to everyone who has helped get him there!!! Not enough words to express let me tell you!!! He is one excited guy!!

 

Hope everyone out there is having a great summer too!!!!

Thanks for stopping on by!!!

just another blog update!! :)

Well once again I haven’t been so good at updating here. So lets see whats new! As per usual I will go down the list of my family members to ensure I remember all that I can! 😉

Jaxon: He’s still doing great! Got his new wheels not to long ago (wheelchair and new walker). Riding in style that one! He also got some new glasses which he loves. Mostly cause there is yellow in the inside of them like a bumble bee! Still working on some fundraising to get him to Movement Centre camp this summer! Have had a couple good epicure parties happen and hopefully another couple on the horizon to bring more in!! He’s so excited about going so fingers crossed it all comes together!!

Nolan: What can I say about the middle child…hes quirky as all get out that’s for sure with a fashion sense all his own! He lost his first tooth this month too! He was pretty stoked about that…but sad the tooth fairy actually brought him money instead of the chocolate money. So she will know for next time! His goal this summer is also to ride his bike with no training wheels!! Last summer with our move was a bit of a right off so we are doing our best to get out there this year to make that happen. And (minus today as there is snow galore) its nice living in a warmer climate to start him off good and early!!

Emerson: Oh my little baby E has become so independent I don’t know what to do! Determined to do everything see everything and be just like his big brothers! He’s now officially crawling and getting into things he should be!! Loves to eat and make big messes and is our dare-devil child!!! Just a week or so ago he figured out how to stand up on furniture. He thinks its pretty fun and it takes away from sleeping time…its a really good thing he’s so cute!!!!

So now onto some family news…nothing really all the exciting to report. We’ve done a bit of touring around just to take a break from reno life and have some much needed family time! Did a tour at Frank Slide, and this weekend hit the states for a night away!!

Frank Slide

Giant Springs State Park in Great Falls Montana

For anyone who enjoys my cards I just wanted to let you know that I now have an official card blog! Go check it out at; http://cardcreationsbychera.blogspot.ca

they grow to fast

My baby is slowly not so much a baby anymore. Where does the time go??? Really….where does it go? My little man is now 8 1/2 months old, feeding himself and not quite crawling but soo close. He can get around pretty good. Curious and very independent! Weird for a 3rd child?? It is for me! Oh and did I mention he also now has 2 teeth…compared to some hes slow on that front, but his two little chompers are just so cute!

Jaxon is doing good too! We have our first visit coming up next week with all the new doctors that will be involved with him for the next 10 years while he’s still in the pediatric program! It will be a long day but nice to have another thing under our belt with our move! Other than that he’s doing really well. Saying things that remind me how old he’s getting. Scary….

And Nolan…oh Nolan..what can I say about you? He’s growing like a weed, getting sooo tall.

(valentines day shirts)

The kids just had a week off school and Ma and Pa came for a visit! Was nice to have the company and soemone else to help me distract the kids while hubs was at work!! We didn’t do much but the time was so nice to have!! Now just to get back into our normal routine! Always a fun time!!

I’ve also been busy making cards. Had some orders to fill. Thank you so much to those people so far! Its been a great help to Jaxon’s camp fund!! We are a quarter of the way there now between the many epicure orders and card orders!! I’m really hoping that we are able to raise enough to get him there!! He’s really excited about it!!! Check out my facebook page for it https://www.facebook.com/groups/305557259546178/

(found this card while unpacking some things…guess I was always a card maker)

Other than that, we are doing good. Adjusting still to the move…but mostly to the fact that theres no snow and its usually warm..well much warmer than what either of us are use to! And when it does snow it and automatic sliding day (if the dump is good enough)…