Physio, physio, physio - Back to Basics

I have a feeling I’m going to have a lot to say about this in the coming weeks.

We’ve been looking at our options after being ‘dumped’ by Grandview. Yes I know that is not what actually happened. But that is how it feels, so I’m going with it.

We met with Katie, our infant development worker (who we LOVE) and she brought us information on private physio. Today we went to mom and baby group at the SB clinic at Bloorview. We have assessment by the RN/PT/OT/SLT/SW (I think those are all the letters) for an hour, then parents leave for our own private education and group. We end up socializing and talking amongst ourselves for about half the time and squeezing in some education at the end. It’s almost as if we need another hour to socialize and get to know each other. (Actually we talked today about meeting at noon for lunch and socializing before group).

At group today I had the opportunity to talk to the physio at Bloorview. We talked a little about what he was doing (because he really refused to show off anything). We talked about what went on with Grandview, and how I feel we really need to get more physio.

I left kinda feeling like we have been totally on the wrong track for the last couple of months. And I’m not sure how we got off track. OK that’s not true. I do know where we got off track. We tried to skip some steps.

So I have some goals, some plans to follow up on. We are going to work A LOT at home. A LOT more than we have been doing. Thank you Gretchen for helping me realize that we will be doing the actual doing of physio (commenting on my post when we got 'dumped'). So a break doesn’t actually mean no physio, it just means more effort on our part. As long as we have some guidance of what to do and not to do.

So our plan. Standing frame, standing frame, standing frame (I guess I just feel like repeating myself a lot today). Work on lie to sit. Consistently. As well as hands and knees, and kneeling. All of these I know Nick can do. It’s just getting him to do it more often. Also more ball work (core, core, core).

These are basic. And they’ll lead to the next steps. Stronger legs, stronger core, more confidence. So that when he’s standing at the couch, he’ll be stronger and more ready to take those steps. Because then he will have some basics behind him.

I think before we were concentrating more on the standing (which is great), but not enough on making sure he had the skills to back it up.

It reminds me a little about learning how to play piano. I took piano lessons when I was younger. I enjoyed it, mostly. But what I really wanted to do was play my Les Miserable and Phantom of the Opera. So once I took a couple of years of lessons, played lots of very basic stuff and learned how to read music. I could read the music, and could play some of the music and stopped lessons. I can play sorta well with my right hand, and only 1 or 2 songs with my left hand. I can do a couple of the songs but that is it. I am not a very good piano player. Pretty much, because I skipped a bunch of steps. The basics.

Birthday Girl!

The day finally arrived. We had been talking to Katheryn for a while that it was going to be her birthday. And there were going to be presents, and we were going to go to the zoo and she was going to be 3!!!!

So we strated the day off with our special t-shirt. This Little Monkey is Three! and then we got to open some presents. Katheryn gave all the presents out (like at Christmas time), but we had to tell her that, no all the presents were hers.

 Katheryn was so funny. Every single present she opened she did the same thing. It was "ooooh, look!" and then she wanted to wear/play/watch whatever it was.
We had to stop opening presents for a while after Katheryn opened up a Dora DVD and we watched it.
But she was definately more into the presents than she has been any other year.



Then it was off to the zoo to see polar bears! We go to the zoo every year on her birthday. Last year we wore just our t-shirts (and pants ect). But this year when we went we had to be appropriately dressed for April weather. Notice the winter coat and red cheeks! (We were also in winter hats and gloves)

Katheryn was too excited to wait for the actual polar bears - she was hugging the sign!

Polar Bears!!! 

OK, now we can see some more animals. But first some very  important puddle splashing with Madi.

And another favorite - Turtles!!! Always a hit, especially when they are so, so close.

And Nick enjoyed watching the fish swim around in the aquarium.

We took a break for some birthday cupcakes and singing. Katheryn as usual really hated the cake part. I can add this to the other 2 pictures of Katheryn crying in front of the birthday cake (I know mean, mean mommy). But it's a tradition, just like the zoo!

Katheryn was really happy just eating some nacho chips.

That's ok,  it leaves more for this guy!

What?! Do I have something on my chin?

That's right, it's my birthday. I am a big girl now!!!

 

Here is a video of how Katheryn reacts when we sing happy birthday to her.

 

 

Physiotherapy Woes

Physiotherapy.

A core therapy in our daily life. A key member of our health care team.
Exercises and working with the goal to reach Nickolas' full potential.

And one of the things that makes me doubt and worry. Are we doing enough, can we do more, are we doing it right? (These are not new Questions). THIS is the thing that is supposed to help getting Nick mobile, getting him independent. THIS is the person who is supposed to work with us and help us reach these goals.

THIS is the person who made me so excited 2 weeks ago when she mentioned the 'w' word and helped us with exercises and activities once Nick started standing. Was it really only 6 weeks ago?

We still have more to work on. It is more than just standing, and trying to get him to cruise. Getting him stronger on his feet and more aware of how to move his legs. Strategies to help him.

 Nick hasn't sat himself up  until Tuesday, and we've been working on it for months and months and months. We still have kneeling and 4 point on the goals list. Getting more core strength. And there are probably other things on this list of things for us to work with physio that I can't even think of. Nick is juggling lots of different balls to reach his goals. Instead of just concentrating on one thing!

For example, I don't know if some of the games I play with him are actually helping or just play. When I'm changing Nick and cathing him. I get him to try to kick my hands when I hold them above him. So that he is bending his legs at the knee and not the hip and controlling his foot. Is this just a game? Nick likes it so yes. Is it helping? I have no idea? Is it hurting? No. Is there anything better I can do that would help more? I am out of bright ideas.

So not that we've established the importance of physiotherapy, we get to our woes.

Our physio block, that we had just started 6 weeks ago (and missed 2 weeks because of sickness) is done. Not only is it done, but when someone will call us 'in May or June' we will have a new physiotherapist. Because caseloads are being shuffled. So now Nick will get another new face he has to get used to. And we had just started getting some work out of him without crying!

I felt like we were just getting started, getting comfortable and then had the carpet pulled out from under us!

So now I'm looking at private physiotherapists. Because waiting until 'May or June' is just not acceptable. Nick is 16 months old (well, actually 16 1/2 months). He has had 5 PT sessions since he was a year. That is just 5 session since he got his standing frame, since he got his AFO's. 4 sessions since he started to stand on his own.

This is the therapy that is supposed to help his mobility, help him reach his potential. And here we've been doing (what feels like) nothing for the last 4 months! Either waiting for physio to start, or waiting for him to feel better, or finally getting to physio, just getting started, just starting a plan and it's over. For another 2 months!

In May he will be 18 months. So that is 5 PT sessions in 6 months!
There is NO WAY I'm letting that happen!

You tell them Nick!

Good morning Mom!

Look what I decided to do today!

More Sick Days

Just when I think that we are on a streak of good health...
Nick decides to throw me a for a loop.

He caught the stomach flu. So my baby that never, ever throws up decided to freak mommy out by throwing up all day.

And yes, shunt watch came into effect the moment he started to throw up. Out came the measuring tape, fontanel soft (I am so glad that hasn't closed over yet), eyes fine, lethargy/irritability nothing unexpected with the flu.

Routine, medicines and any type of physio or work went out the window. Any appointments or reasons to leave the house were cancelled or ignored. Katheryn ran wild and couldn't figure out why I didn't want her playing or touching her baby brother. I carried around alcohol wash so that I could disinfect anything that had vomit on it.

Nickolas is not a juice drinker. He hates water or anything that is not milk. And giving any type of milk product to a child that is vomiting. Not a great idea. But I knew I had to keep him hydrated. I tried different juices, different mixtures, apple sauce. Anything! And I was still keeping shunt in the back of my mind.

Whoever would have thought that the stomach flu would be on the top of a wish list!

 The next day Nick slept alot, didn't look very happy when he was awake. But kept what little food he felt like eating down. He didn't want to eat very much. Not even his banana! His most favorite food to eat!
Shunt worries continued, but head measurement and fontanel still checked out. And everything else.
Sometimes normal baby sickness happens. It's not like we live in a bubble!

Every time I thought about taking him somewhere, Doctor, urgent care clinic, Emerg, he perked up and we decided to wait. Because really I felt they would tell me it was a virus, keep him hydrated and he'll get over it. And I can do that without dressing everyone, dragging them out into doctors offices and waiting for hours to be seen.

OK, so no one wants to hear the run down of being sick. I'm sure you've been there. Katheryn caught it Saturday.

Nick took a couple of days (4) to really bounce back. By Saturday I got a smile, by Sunday he was 75% better. But then his output was starting to get lousy, because he was still refusing to drink. Friday I got him pedialite that he just barely tolerated. And he really hated me shoving a syringe in his mouth and making him drink that way.  I think he was hitting his minimum output, but that was it.

Now looking at his fontanel - was is sunken? Did he produce tears? Was his mouth dry?

And the round of worry started again. Gastro, dehydration, shunt, UTI, constipation, diarrhea (which you'd think I'd know which one it was). Every little thing sent me into another cycle of worry.

But I think we have finally turned the corner. I've allowed Nick to drink his milk only, because that means he'll drink. We will conquer the need for water another day.

But here's hoping that the spring weather will bring more days of health than sick. Because it has been a really long time for a long run of non-sickness!