I felt misled

This morning my eye caught a post from a special needs page that mentioned hope for the continual grief special needs parents experience. I chose to read it. Perhaps because of where I am at this stage of things, but I actually felt ‘misled’ when I read it! It felt weird having that thought/feeling about this article.

The truth is, parents of special needs children deal with unique grief from the moment of diagnosis of their child(ren). It’s a different type of grief and many don’t understand it. Parents of special needs children can get struck with grief at any moment and it’s a cycle that happens again and again. They don’t always go through the regular stages and find resolution.

What made me think I was misled was that when the article asked what grief experiences have snuck up on you lately, the answers all had to do with children that were still alive. I was taken aback as I had thought the article was going to be about loss. The loss of a child. Although the article was still true with it’s content, I felt misled.

We as parents have been grieving for our children all along. It’s difficult to explain but there is a different type of grief associated with raising a child with special needs. Some may say it’s not grief, but the reality is that it is a type of grief even if we don’t want to admit it. The grief we experience is sudden situations and/or circumstances that remind us that our child(ren) aren’t able to do certain things as their peers do. They aren’t at ‘level’s’ they should be for their age etc…the list could go on…

To us, our child(ren) is/are perfect. Even with our own imperfections, we are all perfect in God’s eyes. We are who we are for a reason and there is a plan for each and every one of us. Even as parents, we know our children are different, but this is normal for them and normal for us.

I hadn’t really thought about, that to a degree I was also grieving during those years. I never looked at things Patrick couldn’t do as a loss though because there were so many other things he could do even if it had to modified for him to do it. He smiled so much and so often, how could one look at it as grief?

The grief now is SO different. I have those moments when something all of a sudden strikes me and I am in tears, wishing with all my might that Patrick was still here. That I could hear his laugh, see his smile, hold his hand and get a hug from him.

For myself, I feel a loss in my self esteem and confidence. I hesitate to make decisions on my own now, which sounds odd because I had to make decisions ALL the time with regards to Patrick’s life! I’ve gained weight (even watching what I eat) and can’t seem to lose the weight as easily as I could before.  Tired feels like part of my vocabulary now. I feel like I’ve been running non-stop for almost 17 years, and now my body seems to feel like it needs time to recuperate from all those years. It’s frustrating because all these losses I feel, I didn’t feel before when Patrick was here.

I think I feel like Patrick made me strong. He was strong, and maybe he felt I was too and we fed off each other that way, and it worked!  We were a great team together!

As many of you know we started Grief Group a couple weeks ago.  With many being away this week, group was cancelled, but next week I am going to share this with the other parents attending and get some feedback and thoughts on this.

Let me finish off though with this…

Although the loss is huge, the JOYS are many!  Recalling the joy of who he was, how he interacted with others, the way he made people feel and especially how happy and proud he made us feel…that will never go away!!

Focusing on the JOYS makes the loss a little easier each time.  Sharing about him makes the loss a little easier each time.  Some may tire of hearing about him, but we never will!  His impact and legacy has helped and will continue to help many people and for that we are truly grateful!!

Thank you to everyone who has been so supportive, loving, kind and generous.  We couldn’t have done it without you either.  Thank you for being a part of our lives, whether near or far, we love you all!

JOY!

His laugh was infectious! He loved to laugh!!

JOY

Patrick & Bruiser!

Family JOY

Playing with the camera on Patrick’s iPad. He loved seeing Auntie Rosanne!

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Supportive Services = Palliative Care Team

I had posted a bit of an update the other day on my FB status.  It was in response to a family member asking for the latest update on Patrick. Based on reactions to my status tonight, it is quite clear, not everyone saw/read it.

I apologize.  I should have posted the update IN my actual status or here on my blog.  I’ve been so tired to do any length of updating, it’s just much easier to talk to someone in person or on the phone.

Here is the update I posted the other day…

Waiting to hear from Neurology to see when the 24hr EEG will be. They have told Neurosurgery to hold off on the surgery till the seizures are managed. I left a message for Neurology this morning. Supportive Services (Palliative) called this morning and are coming to the house on Thurs to go over things etc…

Patrick is doing ok. He has bouts of animation, but still tires easily. Dietition has been in and he is needing to have 2 supplements/Ensures a day to make his caloric intake. OT is coming out this week to discuss energy conservation for him.

As the day goes on, he tires more. A nurse comes to the house 2x a week. He will get his stitches out today and will need a port flush in the next couple weeks.  (stitches came out yesterday, port flush next week)

CCAC has given me information on services I can hire to come in at night if I decide to use a PSW or Nurse to keep an eye on him through the night. If I go this route at some point, it will be a nurse coming in, not a psw.

The money I have for respite can be used to pay for that service as well. It will just take those ‘hours’ away from the girls. Im going to call VON and see if there is additional funding somewhere so I don’t have to use those funds if I decide it’s necessary to have someone come in at night.

 

I used the term most are familiar with, perhaps that was a mistake, but it has also made people realized how serious this surgery will be.  Supportive services will be supporting us leading up to, during and after the surgery.  They will also be preparing us for things in case the outcome of the surgery is not what everyone is hoping for.  No one wants to think negatively, but we do have to deal with the reality of the situation as well.  Neurosurgery thought having them involved was a good idea for this.

In all the surgeries Patrick has had, I have never once thought he would never come out.  I will maintain that thought through this one, but as I mentioned, I have to look realistically and be prepared for this one.  This is a complicated and very long surgery and one that no one, even the Doctors are looking forward to.

I have my moments with things.  I’m tired.  I miss seeing friends and family, but very much appreciate when they stop by for a visit here to see us.  It makes me feel like I’m still connected to the outside world and provides a nice distraction, even if only for a little while.

We appreciate all the thoughts and prayers everyone has been sending.  Those who have dropped meals off because there are days I’m too tired to think about cooking or remembering to take something out to cook, it’s truly appreciated! Thank you!  Our schedules have been off because of Patrick’s tiredness, so meals are not always at meal times.

Thank you everyone, I will try to keep things updated, but please don’t hesitate to call or message or come by for a visit if you’re wondering how things are and have not seen a recent update.  I am tired.

HUGS to those who need them and thanks for those sent back! 🙂

 

Impressive Disney Planning – Cont’d

For all the changes that we’ve had to make in the past week, our travel agent has been wonderful!  She has been quick with information, bookings, reservations and insurance stuff and more.  The girls are excited and Patrick is waiting for me to make up a countdown calendar to put on his wall.

4 of our sit down meals are reserved, one for each park, including two character lunches!  One with Winnie the Pooh Gang (whoever of them can make it) and another with one or more of Mickey’s Gang!   The other two reserved meals are suppers, one being a Chinese cuisine and the other Italian.  With the Dining Plan we have, (we have the dining plus plan for free), we get one table seated meal, one quick serve meal and one snack each day we are there.  Heather, our travel agent, called me today with some great news!!  All the restaurants we have our reserved meals with, will accommodate Patrick’s diet as well!  How awesome is that!! 🙂  They will chop/puree up Patrick’s meal for him/us! How great is that?!  That will make some of our meal-times easier! 🙂  We’ve been informed to inquire at any others we attend for meals, as they may accommodate him, but those are not guaranteed!  Regardless, those 4 meals still help.

We’ve been given information about accessing many of the attractions at the parks with regards to accessibility and their alternate entrances for persons using mobility devices.  These entrances also allow a maximum of 6 people from the party including Patrick to stay together.  Since we are now 5 again, we can stay together and enjoy the attractions together!

A couple of the attractions we are looking at, are Kilimanjaro Safaris and the Jungle Cruise, both I know Patrick will love as it will give him opportunities to see many different types of animals.  He is also excited about going on any attractions that are train rides.

Today, we went for passport photos.  I had already called Passport Canada and inquired about what would happen or need to be done if we couldn’t get a photo of Patrick not smiling and without his teeth showing.  They said I would need to get a letter from a Doctor explaining why.  So in the meantime, I’ve put a call in to the Ped. Dentist for a letter with an explanation and why I’m requesting one.

Everything about the trip is booked now.  Plane tickets, Insurance, Resort, Transportation to and from the airport, Park tickets and some of our meals…everything is booked and paid for.  The reality of it is starting to hit me!  All the little pieces of information that we’ve been given and all the answers to all the questions we’ve asked have been answered and answered quickly as well.

I’m a little extra tired tonight, so I’m going to end here for now.  I will post more updates soon.

Thanks for stopping by and keeping up to date with us.  We love to hear from you too!

Have a wonderful evening! 🙂

 

Heroes in the home

What is your definition of a Hero?  Do you know any Heroes?  Do you consider anyone a Hero?

Have YOU ever been called a hero?

What a way to start off this post asking so many questions.  Wait, I have more!

Are you a caregiver?  A Mom?  Do you look after a family member or friend?  If so, YOU are a Hero!

There are different definitions of a Caregiver.  Wikipedia has an interesting definition of Caregiver:

Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.

The words may be prefixed with “family” “spousal”, “child” to distinguish between different care situations, and also to distinguish them definitively from the paid version of a caregiver, a Personal Care Assistant or Personal Care Attendant (PCA). Around half of all carers are effectively excluded from other, paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. The term “carer” may also be used to refer to a paid, employed, contracted PCA.

The general term dependant care (i.e., care of a dependant) is also used for the provided help.[1] Terms such as “voluntary caregiver” and “informal carer” are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual’s life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives.

More recently, Carers UK has defined carers as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”. Adults who act as carers for both their children and their parents are frequently called the Sandwich generation.

A general definition of a carer/caregiver is someone who is responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age. To help caregivers understand the role they have taken on, “Next Step in Care”[2] outlines the following:

You are a caregiver if you:

  • Take care of someone who has a chronic illness or disease.
  • Manage medications or talk to doctors and nurses on someone’s behalf.
  • Help bathe or dress someone who is frail or disabled.
  • Take care of household chores, meals, or bills for someone who cannot do these things alone.[3]
It’s my Duty Isn’t it?

With an increasingly aging population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well.

What is YOUR description of a Caregiver?

As caregivers, I don’t think we give much thought to what we do.  We just do it.  It’s natural, it’s what we do.  We become masters of multi-tasking, juggling appointments, preparing lunches and making meals, transportation, cleaning, laundry and more.  We are teachers, doctors, nurses, chefs, handyperson’s, therapists, advocates/speakers, to name a few, all wrapped into one.

When was the last time someone complimented you on everything you do?  When was the last time someone thanked you for all you do?

When was the last time someone called YOU a Hero?

It’s not always easy or comfortable to hear those words, because to us it’s what we do all the time.  It’s our life!   It’s still feels good to hear them though, when we do.

Often people ask me; ‘How do you do it?’  My response of course is, ‘Do what?’  They reply;  ‘Do everything you do with/for your son, and all the things you are involved in.’  What is our usual reply to a scenario like this?  This is my life, I just do it.  Just like you do everything you do in your life and for those around you.

Being Mom to a child with disabilities, we face challenges that many others don’t have.  We all have different challenges in life we go through, but some are more specific, I’m sure you understandwhat I mean.  I hope you do.  We don’t look for pity.  We don’t want you feeling sorry for us and all we go through.  We are proud, just like you!   It’s difficult for many of us to ask for help and/or support for whatever it is we might need.  Although there are days we think we must be superman, we know we aren’t.  It’s tough for us to take time for ourselves, but we learn, slowly and it’s something I don’t think any of us perfect.

A week or two ago, one of my son’s workers asked my permission to nominate me for an award through CCAC (Community Care Access Centre).  I wasn’t sure what it was about or for, but she needed my permission to submit my name.  Since things have been so busy with Patrick the past month, all I got was that it had something to do with being a caregiver.  I gave my permission and honestly didn’t think about it again, till this past Friday when I received a letter in the mail from CCAC.

An initiative of South West CCAC and the healthline.ca

Congratultions!

We are pleased to inform you that Michelle S. has nominated you for a

HEROES IN THE HOME Caregiver Recognition Award!

There is a special celebration  on October 20th to receive this award.

WOW!  How sweet of Michelle to think so much about me to feel I would give justice to and deserve this recognition.   I really am blessed!  The girls who come work here, love working for/with Patrick and I.  We become like family and care for and about each other.

How amazing someone thinks of me as a Hero!  It’s an indescribeable feeling.  I’m just me after all, always am, have been and always will be.

I am very grateful for everyone in our life who loves and supports us.  I am grateful for all the things, whether big or small that anyone does with and for us. I often wonder how I could ever repay everyone for all the kindness, love, support etc that they have shown us.  It truly is overwhelming some days and I don’t think I could find enough words to express it.

For tonight though, I will say thank you!  Thank you to all of you!  May you know you are loved and thought of fondly often.

For tonight, I will check on Patrick before I crawl into my bed, and fall asleep knowing that someone thinks I’m a Hero.  And I will let myself have warm fuzzy feelings, even if it’s for a short time because tomorrow I will wake up and do it all over again.

Let me leave you with one more thought…

YOU are a Hero too!! 

Update 6 – one of those appointments

It’s been a few days since I’ve done an  update.  I’m so tired when I get home in the evening and getting up so early in the morning.  I’ve been setting my alarm for 530am so I can get used to being up when he goes back to school.  I’m at the hospital just after 730am and I try to be back home around 8pm as long as nothing is going on.

At the last update, we were waiting for the new valves to come in so they could get into surgery and fix them.  We did go home for the long weekend.  Patrick did alright, nothing major to warrant an earlier return to the hospital and thankfully didn’t need to give him any codeine over the weekend either. 🙂

Tuesday afternoon we went back to the hospital to get admitted again.  The valves arrived Tuesday and surgery was Wednesday, first one in the morning.

I’m going to try not to go into too much details, I know for some it is over-whelming and difficult to understand.  If there are ever any questions about anything I have written, please feel free to email/comment and ask.  I will happily answer.

Surgery Wednesday morning went well.  They took the full 3hrs and a tad more.  Both valves were replaced as well as the upper end of both shunts.  Testing during the surgery indicated no issues with the bottom ends.  At the upper end, the left was blocked/plugged and the right was likely partially plugged as it was quite slow, hence both got replaced.

Both shunts are set at 60, where they had been set for the past 6-7 years.  For those interested, the settings range from around 30 – 300.  The lower the number, the more it allows the shunts to drain the ventricles.

Patrick came out of sedation and recovery quickly.  They were actually paging us throughout the hospital to get us to go back to post-op.  We didn’t hear the page even though we were just in the hallway talking to Dr. Ranger.  We went in and were able to get him calmed down.  The nurses were amazed apparently at how well we communicated and got him settled.  They said they were getting alot of ‘no’s’ and didn’t know what he was saying.  Understandable.

The days following surgery have been up and down.  A CT was done Friday morning.  Results were that the ventricles were a ‘little’ smaller, but still generous in size.  They were heading in the right direction.

Friday afternoon, Patrick started to become symptomatic again.  Lethargic, uncomfortable, fidgety, head pain, slow responding and there was ‘swelling’ at the shunt sites.  The swelling is actually fluid, not swelling.  He was having times of alertness, smiling and such, but then would go down and have the aforementioned symptoms.  He had slight elevated temps on Friday, but none since.  His vitals have been good, blood pressure, temps etc…  Saturday he began having longer periods of lethargicness and periodically breaking out in rashes.  His chest was sounding crackly and a bit rough with a phlegmy cough.

Too make a long story short, as a result of how he’s been this weekend, another CT has been ordered for today.  We’ll see what the CT shows, pharmacy is looking into how his meds are made up and what’s in them to see if that might be the cause for the rashes (they don’t think so), we’ll see what Dr. Ranger says tomorrow (she’s going to scratch her head again and sigh wondering why this is happening when he has 2 new, great working shunts).

It’s frustrating when people (Dr’s/Residents etc.) come to see your child who have never seen them before and think that because what’s happening isn’t “typical” or “by the books”, that it’s probably nothing serious and to ‘give it time’.

It’s frustrating when explaining to them about your child and they look at you as if you are reaching for ideas and/or looking for something to be wrong, when in fact you are trying to tell them what IS typical/normal for your child!

It’s frustrating when they talk to you as if you know nothing and can’t understand what they are saying/explaining!

Thankfully, this afternoon the adult Neurosurgery Team Resident that came, remembered Patrick from last fall and all that happened there.  He remembered seeing Patrick a couple times and hearing about his case.  I think Southwestern ON heard about him!  He said it was quite the interesting case.  I’m thankful he listened to us and understood what we were saying and explaining and didn’t try to brush things off or us off.

I’m glad that I am a great advocate for my son.  I ask questions until I get answers I’m satisfied with and understand.  I work with the Dr’s/Nurses to decide what the best plan of action should be.  I keep them informed and help out as much as possible.

I know things will get sorted with Patrick this week.  Until last fall, he had gone 6yrs or so with no pressure issues, and now if this is what’s happening again, we aren’t even a year yet since the last.  I’m hoping this isn’t a sign of things to come.

I’m going to post a Poll asking your thoughts on Doctor/Nurse – Patient/Family Communication and how you feel about it based on personal experience.  I’m quite curious.  I hope you will take a quick minute to answer it.

Thanks to everyone for their continued thoughts and prayers for Patrick.  Again, it is truly appreciated.

Patrick asked for Bruiser to come visit him tomorrow.  I have given Bruiser a bath tonight and will confirm with the Nurses it’s ok to bring his dog up to see him again tomorrow.

Patrick didn’t want me to leave tonight.  I told him I had to pack up some things for him and to bathe Bruiser if he wanted to see him tomorrow.  He seemed ok with that.  Dave, Patrick’s father has been staying the night at the hospital so I can go home and sleep.  He has been up since the week of his Shunt-o-gram and likely will not leave until Patrick is ok and able to come home.  If Dave wasn’t up here, I’d be at the hospital 24/7.  Someone needs to be there all the time.  It’s mandatory in most cases.

I appologize if I seem all over the place here, I’m tired and heading to bed.

More to come…

 

Update 5 – one of those appointments

Change of plans…

The past couple days have been fairly quiet.  Not much really can be done until the new valves for the Shunts come in.  Can’t really do much else either until there is O.R. time available.  Should he deteriorate quickly, he would be taken into the O.R. of course and given another type of Shunt, if his aren’t in.

Patrick is still getting heachaches, but none like the other day thankfully.  He has been going down to the Child Life Playroom and doing some crafts for about 20-30min depending on how he feels, which is good and gets him out of his room for a bit.

Today a Ventriliquist was visiting on the floor, her name was Sue and she brought Boomer the Mouse with her.  She came and saw Patrick twice today, he liked that and thought she/they were pretty funny.  Boomer told some jokes, made some funny comments, asked Patrick questions and sang a few songs ranging from The Lazy Song by Bruno Mars, The Black Eyed Peas to Kesha.  He liked the singing.  Patrick likes Jeff Dunham, so it was no surprise he liked Sue & Boomer.  Thankfully she caught him feeling not too bad to enjoy it.

This morning at 7:30am was Patrick’s CT Scan.  Dr. Ranger and Dr. Pinkoski were by afterward to see how he was doing and discuss the results.  It was nice and surprising to hear Patrick’s ventricles have come down a little.  They still are large for him, but down from previous, which was good news.  What does that mean?

It means, regardless what the scan says/shows, the programmable valves on his current Shunts are not working properly and still need to be replaced.  The valves will arrive Tuesday and surgery will be Wednesday.  Again, if he has issues and deteriorates in the mean time, he will go in to the O.R. and have different shunts put in.  We are all hoping he can hold off till his come in, as they are specific for/to him for a reason and have been working great for him the past 6-7 years till now.

The change in plan is the following:

They were going to allow Patrick and LOA (Leave of Absence) for a night, to go home and get out and away from the hospital for a little bit.  My concern was if he had another headache like the other day, I have nothing here to deal with that kind of pain for him.  They said they would send a script home for codeine just in case.  At that point I felt ok with that and being away for one night.

The more I thought about it, the more I thought perhaps going home for the weekend would be a good idea.  It would mean having to be dishcharged instead of having an LOA.  The LOA’s are only 8-10 hrs typically, but one overnight was agreed for Patrick.  Anything longer requires discharge.  At first, I didn’t want to go through the whole admitting thing again, or sit in emerge if something happened while at home.

I decided it would be ok and good for everyone to go home, sleep in our own beds, no interruptions, comforts of home, cooked meals etc…and I had the script to fill if he got another bad headache.  Of course there were stipulations, obvious as well, he was to be watched, if he deteriorated get him in, if he had bad pain again give him codeine and bring him in if necessary…AND…we had to be back Tuesday after lunch to be admitted again and prepped for surgery and see anesthesiology.  We can sit around at home and be more comfortable.

I am ok with him home and having the script, just in case.  I know him and what he’s like and what happens with him well enough and Dr. Ranger knows I am good that way, that if i have concerns, I will take him in.  If he goes into emerge with pain that bad in his head,…we won’t be waiting long!!

So…we are home, although temporarily, we are home!  Script filled and relaxing.  Sleeping interruption free and being comfortable.  🙂

Update 4 – One of those appointments

Monday evening, shortly before I left for the night, I happened to walk by the Nurses station and was waved over because Neurosurgery was on the phone.

After speaking with her for about 20min on the phone, the plan was to do a Shunt Series that night (if they could get one) or the next day.  We didn’t expect to see any issues since it seems that the programmable part of each of the shunts is the problem, not the rest of the shunts.  After having the O.R. closed down today due to not enough anesthesiologists and  Dr. Ranger not being able to get any O.R. time from anyone else, surgery was sure to be a go for next Wednesday.  Sooner, if he deteriorated alot and quickly.

Shunt Series was done Tuesday morning, all was good, as expected.  The rest of the day was waiting to see if anyone from the teams would be around to see us.  No one came.

Patrick has been getting more symptomatic since he’s been there, more so since the setting adjustments.  He has his moments where he looks as if nothing is wrong, then…the discomfort and headaches come.

Today, Wednesday, Dr. Ranger and a Resident came to see us this morning.  After some discussion more of the plan seem to come together.

Valves (programming parts) have been ordered.  Typically they are able to keep Codman Shunts in stock now that they are easier to get, but…of course there’s a but…Patrick’s are specially made and have to be ordered.  They will take a couple days to come in.

As I mentioned previously, since she is not able to get some O.R. time this week, surgery will be done next Wednesday.  A CT will be done on Friday to see how things are looking as well.

Today was a rough day for Patrick.  This afternoon, a headache came on so fast and so painful, Neurosurgery had to be paged and Codeine was ordered for him.  You can tell when he is discomfort.  He gets so agitated and fidgety, his pupils gets small, he repeats himself multiple times and seems to go into a daze at times.  Those are the main symptoms.  He had been given Tylenol not to long before this and it doesn’t help at all.  He even tells me before hand that it doesn’t help.  This afternoon, he was in tears from the pain!

He’s developed a tolerance to the pressure and pain from dealing with it for so many years, that when he says it hurts, you KNOW he’s in pain.  After the Codeine kicked in, that helped SO much!  What a relief!  Before I left this evening, his headache was coming back.  He was given Tylenol and I’m hoping that he can get through tonight without needing the Codeine.

I know it’s a long wait.  We were initially given a choice of going home and coming back next week for the surgery, but because his headaches are becoming more frequent and his symptoms more often, he is going to be kept admitted as everyone feels better that if he deteriorated quickly, things could be done much more quickly having him already here.

This afternoon proved that point.  Had he been at home, I had nothing here that could have helped him get through that pain.  I would have ended up bringing him back in, and likely would have had to sit in emerge for hours before something was able to be done.

I feel comfortable knowing Patrick’s surgeon is looking out for him and doing her best to get him better.  She knows Patrick’s history and how difficult and complicated things get with him.  Other Doctors who are not familiar with him, unfortunately don’t always listen or believe the facts you give them regarding your child and alot of time is wasted.  Because Patrick, as we know, does NOT go ‘by the books’, some Doctors won’t get that.  That’s  happened before, and thankfully the one this weekend was able to understand and learn quickly.

Although it’s going to be a long week waiting for the surgery, he is in the best place.  It will likely take a few days recovery, hence the week and the half more in hospital till we can go home.

Thank you everyone for your kind words, thoughts, prayers and hugs.  It’s appreciated very much!

Update again soon,

Have a great evening!