Up north

We opened up the cottage this weekend and it was perfect weather.  Not too hot, not too cold.  These are a few shots I took of the nature around us...



We came across this nest when we arrived at the cottage deck,  a new one was already on the light post.

Wildflowers beside the cottage

It was very warm out today but the sand and water was cold, creating mists

Totally random

This long weekend we had a great time just doing whatever we felt like each day.  We had a great time with friends where the kids played some ball and enjoyed the sunshine. 

There is something special to be said about long time friends that even if you don't see them all the time, when you do get together it is so relaxed that you would think you hang out everyday.  You can just sit back and laugh together and catch up on what is going on. They see Sophie as Sophie, nothing different, not special needs Sophie.  The kids don't give a second thought about her funny noises or movements or her pump and tubes.

Better luck next time Lucas - rejected lol

Sophie taking a break from kicking the ball

We used this weekend to get some work done around the house, a bit of a spring cleaning. Lucas' lego has gotten a little out of control lately. The family room rug was half covered by all his creations and it was time for a cull. We decided that it would be a good thing to organize all his bins of lego so that he could find the pieces he needed more easily. So we dumped the whole lot on the rug and got down to business. An hour and a half later we had everything sorted by colour into 7 shoe box bins. It was a bit more of an endeavour than I had expected ;)

Zoe and Lucas cooling off

On Sunday night Lucas and I had fun at a neighbourhood fireworks party. As was predicted, Sophie started to fall asleep just as we were about to head out to the party, so Jason stayed home with her. She would have been terrified by all the fireworks anyway, so it was probably for the best. Lucas enjoyed the sparklers after the big fireworks show and only burned one finger :p

Yesterday, after 3 weeks of Soccer being postponed due to soggy fields, Lucas was finally able to start.  Yay!  He was so excited to meet his coach and see who is on his team.  He knew 3 boys on the team so that was great.  It is nice that he has some buddies built in, but it is also nice that he has the opportunity to meet some new friends.

Unfortunately the city neglected to cut the grass on the field so you couldn't even see the balls they were kicking during drills. It kind of put a damper on the first practice, I sure hope they get it cut for the first game tomorrow night.

Lucas chasing down his buddy in the wheat fields..

Lucas didn't really seem to care though so all was not lost. Speedy is back for another summer :)

Little Miss Smartypants

Sophie is still having some major breathing/coughing issues and we are having a hard time figuring it out. She has been dealing with this for too long now and I feel so awful for her. We have not seen stridor like this in a very long time and she can't go longer than 4 hours without her ventolin neb treatments. She has hyperventolated a bunch of times now and it is very scary for us to see, and scary for her to experience. She turns purple and can't break the breathing rhythym until we change her position for her. On Monday night she also had a 5 minute seizure, we weren't terribly surprised, she is exhausted from dealing with all of this.

We are also thinking she is dealing with some brutal allergies that may be making everything worse. She is done her prednisone and not much has changed so we are going to start her on a liquid allergy medicine that we can give via her tube. Hopefully it will reduce her massive amounts of secretions. She is soaking every receiving blanket and then some that we have. I can barely keep up with the laundry, it is like her reflux days again. But I definitely prefer the clear saliva vs. barf. We are going to take her for allergy testing but can't get in for a few weeks.

Add to this 2 emergency vet visits with the dog which has included sedation, x-rays, enemas (ick), pain meds, prednisone and muscle relaxers, I am pretty much done. Insert sympathy music here.. lol.

In amongst all of this illness we have had some brilliance. My girl has been kickin butt with the Ipad. Not only that, but she showed us that she totally gets what is going on around her. Sophie's speech language pathologist came to the house for an appointment on Monday. We talked about her recent gains with the Ipad, but also how we feel that we are letting her down. We are not keeping pace with her learning and we need to do some big time catch up.

Sophie showed off a bit and it was awesome. I let Kim know that Sophie knows her body parts. We have been practicing head and shoulders, knees and toes. After the song I ask Sophie to touch my head, eyes, ears, shoulders, etc. and she gets every. one. right. She gets that arm up and hits me in the nose with a precision that is so full of effort by her that it brings me to tears.

Then we pulled out the photos. We challenged Sophie and she would not fall for our fake outs. She knew the names of every person we showed her a photo of. If we put a picture of Lucas in front of her and called him Zoe, she looked away, didn't smile and didn't touch the photo. When we used the right name she was all smiles and touched the photo while looking at it. She was able to do this with 2 choices in front of her as well. She got every. one. right.

We have a consult next month with Augmentative Communication services next month, 2 years ago they wouldn't even refer her to the program. Let's just say that we aren't going to take no for an answer this time.

Sophie knows her stuff and I can't wait to do some braggin'.

Going nowhere fast & saying goodbye

This is one of those weeks that seemed to go by in slow motion as it was happening, but now that it has come and gone it seems like it was all in a flash. 

We have one girl who is so sick she can't seem to catch a break and one boy who is ready to roll into summer and has so much energy that can't be harnessed, but has nowhere to unleash it to begin with.  I am sick on antibiotics and Jason is at his busiest time of year at work with marking exams. Ugh.

A new skill...the cobra

Sophie has been struggling along.  Her ear infection has left the building, but the damage done by the pneumonia just can't seem to take the hint and leave.  Her reactive airway disease is in full overdrive and one coughing spell turns into another and before you know it there is no time to breathe for my girl.  She goes into panic mode and the crying out, sputtering, choking, coughing, moaning and yelling with an attitude that I have not seen in a very long time, emerges.  She is gasping for air with a stridor so strong it takes me back to how she sounded before her surgery to remove her adinoids 2 1/2 years ago.

There is nothing we can do for her other than position her in the way that she is comfortable and give her her ventolin treatments and chest physio.  Otherwise, it is all just a waiting game.  We spent the month of February last year dealing with RSV and all the same issues we are seeing now.  It is just not fair and I would do anything to give her some relief.  I am hoping that she turns a corner soon, maybe this beautiful sunny weather will help her along.

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Saying Goodbye

With the renewal that comes when spring arrives I have felt the urge to clean house and get the gardens started.   Hopefully I can get started soon.   We did get a few things out for the spring cleanup and it felt good to purge some of that old junk that was just taking up space in the garage or basement. 

But one item caused me to hesitate. 

Do you have something that when you see it, it reminds you of your child's babyhood?  Of so many hours spent with it there that it is hard to part with, no matter how silly it seems to keep.

This was one of those things...

Yep, a baby rocker.  This thread bare, old baby rocker was a Godsend for many years.  We received this as a gift when Lucas was born.  He used to hangout in this before he could sit up on his own or just for some downtime to quietly play when he was little.

 

Lucas at about 3 weeks old.

When Sophie arrived this was her safe zone.  We could do her tube feeds in it, she loved to rock in it and eventually learned to rock herself.  I could run to the bathroom and know that she was ok.  This chair took so many hits of Sophie barf I am amazed it isn't in shreds from all the washings.  Wait, it is in shreds lol.

Sophie at about 4 months old, a couple days after finally coming home from the hospital.

We found a second one at a mom to mom sale so we had a backup, we took it travelling with us wherever we went. 

I have hundreds and hundreds of photos of Lucas in this chair, thousands of Sophie.  It usually had a blanket behind her, to catch the vomit (I know, lovely) or sometimes just to make it pretty for the pictures.

Lucas had his first solid food in this chair, held his first toy on his own.  Sophie had her first smiles in this chair, met her cousin for the first time and so many other firsts.  It is hard to say goodbye to something that holds so many memories. 

But, my two aren't babies anymore.  We couldn't wedge Sophie in this chair now if we tried.

As hard as it is, it's time to say so long blue chair (as you were lovingly known lol), time to move on.  Thanks for the good times :)

Goin' old school

Sophie has decided that she is done with the healthy lifestyle and she wants to rock it old school for a little while.  We had a good 9 month run of being pneumonia free, that came to a crashing halt this weekend.  Sophie was inpatient at her monthly treatment program for the weekend and we were told that she was having high fevers.  I knew she was a tiny bit congested when she went in on Friday evening and I thought maybe it had progressed to an ear infection.  She was seen on rounds Monday morning and no big surprise she has a bad bilateral (double) ear infection.  She also has an eye infection and a left lung that is full of junk.  By Monday evening she was breathing so hard I took her into emerge.  I was afraid she was needing oxygen but she was satting at about 94-95, so not bad.  They did an xray and she does have pneumonia.

To add insult to injury Sophie was bitten, yes you read that right, bitten by another child on Sunday evening.  He left a mouth mark across her middle finger, top and bottom, it was still an obvious mark the next day and even today 4 days later.  This was new territory for me, there have never been many children that are mobile at her program, let alone children with behavioural issues who can walk and talk.  Sophie was bawling and when the nurse asked the boy what had happened he said "bite".  I was (and still am) furious.  I called my girlfriend who also has a child in the program and found out that her child was bitten a week earlier by the same boy.  WHAT????  Let's just say that added fuel to my fire.

The program manager was not surprised when I arrived at her door first thing Monday morning.  We agreed that it was a staffing issue (the little boy does not understand, he is doing it for attention not maliciously) and they need to address this issue now.  We talked for a long time and she took it very seriously, she had just received the report about it when she arrived that morning and was already working on what to do, and had some good ideas.  She was well aware that I was extremely upset and that it was completely unacceptable that it had happened to one, let alone to two children, who I should add are basically sitting ducks and cannot defend themselves against anything like this happening to them.  It was my fears about her future coming true in front of my eyes and it was pretty devastating.  This was a small event that could have been big, she could have had her tube ripped out or any other sort of attacks could have happened in the short time that the nurse had left them alone.  Sophie won't be going back until I have good explanations of the changes that will be implemented.  They are trying to hire 6 new nurses to cover a shortage which is a good start so that the nurses who are there aren't run off their feet and have time to watch the children and create a safe environment.

So my girl has been really struggling the last two days but I hope that she will turn a corner soon.  She is asleep on her mat in front of me right now, not a big surprise because she was up every half hour through the night last night.  Her night nurse was exhausted this morning, as was Sophie.  We have been spoiled this winter because we didn't have any major illnesses and it was awesome.  So we will dive back into suctioning and nebulizer treatments and chest physio and pedialyte with excrutiatingly slow tube feedings and all the other goodies that come with pneumonia and hopefully she will be my healthy smiley girl in no time.

We had a big appointment on Monday in Waterloo which we were given the ok to go to by the doctor.  Sophie went to a special needs vision clinic and we had a great appointment.  Sophie had been to this clinic two years ago and we were given some great information about her vision and ideas on how to assist her to see the world better.  The Dr. was on sick leave for a year so we had a longer stretch between clinics than I would have liked but I was glad we finally got back in.  This was Sophie's first visit post-seizures.  We did learn that she may have some optic nerve damage that was caused by the seizures.  She also has many different eye control issues now that he also believes is due to brain injury from her long seizures.  These issues are permanent, not what I had hoped for but we will deal with it.  She was doing better with tracking and he thought that she had come a long way from when he saw her at 3 years old.  She still has a diagnosis of severe vision impairment with CVI but we were encouraged by what he said overall.  We see him again in another year, hopefully now that her seizures are more controlled now we will just see improvements next time.