Creative therapy

I bought a small child's stool at Target for $2.50.

Covered it with a thick blanket and tada, a cheap therapy tool!

It serves multiple use. Makes Emily hold her own head up, in turn will strengthen her neck and head control

It makes her bear weight through her arms and knees and engages those joints so that hopefully she will learn to use those joints appropriately one day.

She wants to keep her fists closed so I have to keep opening them and showing her that she can keep her hands open while do this.

Yay, open hands!

She really enjoyed this! When I took her off she fussed so I let her do it again for a little bit, such a go getter :)

freedom

Emily is still very stiff and tight in her legs. Especially her left leg. She had her first PT session this morning and to say it was rough was an understatement.

It's just going to take time and lots of stretching.

I have talked about Emily's waterwaybabies pool and neck ring before but I want to talk about it again.

It's that great!

We put Emily in it yesterday and today to help with her leg stiffness and she is loving it!



Emily in her polka dot bikini



As soon as she hits the water she starts moving. I don't think she stopped at all and she was in it for an hour each time!

I took a close up picture so that everyone can see it is not strangling her. It is like if you were in the pool and you rested your chin on a float. You are weightless so it is not pulling on her head at all.

Her is a side view of the pool. I love seeing my girl standing, even if she looks like Captain Morgan right now ;)

She puts her right foot on the floor and pushes.

The smile says it all!

I am so thankful Emily's great-aunt Shirley bought her this!

She feels so free. Emily is always being held by something, us, her nurse, a brace, a pillow, or some type of chair.

Water therapy is the only time she is free to move how she wants to move.

When it's not 175 degrees outside we are going to take her swimming in a big pool with it. Then she can really move! :)



Whats new?

When I started this blog I did it so that I could document Emily's life.

I am not great about keeping up her baby book, plus there is just not a baby book out there that would work for us.

I have decided that I will print my blog out (eventually) so I can keep all of these memories. So some blog posts you might be boring to you. :)

I just wanted to update what Emily is doing lately.

Emily is 19 months old now! I can't believe she will be 2 this June.

She is 21lbs and 29 1/2 inches.

She has 4 teeth. 2 top, 2 bottom

She loves her puppy Violet.



Talking to Violet



She will talk to it and laugh at it! It is programed to say her name and favorite things. She loves the bedtime music the most.

Emily loves anything with music! We keep musical toys all around the house to distract her when she gets crabby.

She likes watching tv now too. Most recently it is the Little Mermaid and she just watched Aladdin the other day and liked it too.

She is tolerating therapy much better.

We have seen quite a bit of improvement the past month. Most recently she is setting for about 30 seconds unassisted.

This is the best she has done! The boppy is behind her to catch her is she fell but she put her hands down herself and lifted her head up!

We are so proud!

We started Speech therapy 3 weeks ago. The therapist is amazing! I have learned so much from her already and Emily has already shown improvement with eating since she started.

Speaking of eating....Emily is eating, yes I said eating, 2-3 of 5 meals per day by mouth!! This is HUGE!!!

Prior to the diagnosis of IS Emily was breastfed and ate homemade baby food great. We did not have any problems at all.



Big bite!



After we weaned the ACTH and started seizures drugs on her she slowly stopped eating. That is when the g-tube was placed.

The ST taught us how to get the spoon in her mouth without Emily gagging or pushing it out with her tongue. Emily has discovered that she LOVES to eat again! I am so thankful we have found something new that she likes.

We have even seen some hungry signs lately too. You could never tell she was hungry but once she started eating we are seeing signs again!

Emily's seizures are pretty stable. By stable I mean she is having them daily but they are not clustering out of control often. I think once the past 2 weeks or so she had a seizure cluster that required extra meds to stop. They only time she is having seizures is falling asleep or waking up and if we can get to all the way asleep or fully awake she stops.

 The big issue we are having now is her spasms. She has hundreds of spasms daily. Spasms are seizures too. Most of the time they are bad but at least once per day she has a really hard cluster and the really hard ones lead to other seizures so we have to get rescue meds in her fast to stop the seizures from starting after the spasms have stopped.

It could be a lot worse but it could be A LOT better. We also realize this can all change in a moments notice.

She has been very alert since we weaned her topamax. She watches us when we talk to her and looks for us if we call her name.

We are preparing as much as we can for her upcoming hip surgery. I will update that later.

I am so thankful for good days. I cherish good days.

stuff and more good things

I love stuff.

 By stuff I mean things people use for therapy, positioning, seating, toys etc etc....

Insurance pays for a very selected amount of "stuff" each year and most of that you have to fight for. If you chose to buy said "stuff" out of pocket and it is labeled for therapy, special needs, or medical it will be incredibly expensive!

So we try to find things that can be turned into therapy use.

Right now Emily's vision is taking off so we are trying to stimulate her in different ways. It seems that she loves lights a lot so after some thinking what we can do.......

viola!!!!

Turn your baby activity gym into a light show!

She even grabbed the lights!

Here is a couple of pics from yesterday when she was holding her head up. She did this for 3 minutes straight!!!!!!!

 

I am so proud of my little girl!!

What kind of "stuff" do you use to make therapy creative?

18 month check up

Emily had her 18 month check up today.

She is almost 21 lbs now! Her head, height and weight are all small, on the charts though and proportionate.

We were very frustrated this time because we had to wait 1 1/2 hours for a scheduled well baby check up. She is not getting vaccines right now so all the doctor needed to do is check most orifices-all were clear. I don't think she even looked at Joe or myself once. She never once asked how Emily was doing or if she was doing anything new since her 12 month check up. She never asked if Joe and I were doing ok or if we needed anything.

She was rude and angry that her nurse was not there to write her prescriptions and notes.

The reason we have stayed as long as we have is because of the awesome nurse case manager. Thankfully we don't see the pediatrician often.

It just makes me so sad to see a doctor who is doing their job because she has to do it, not because she loves to do it. You know a doctor who does it because he loves to do it when you see one.

Emily has had much better head control lately. She still has far to come but her PT thinks we may have her setting up within the next 6 months! I can't wait to see my baby setting!!!

She has two teeth on the bottom and one on top is getting ready to break through.

We know that teething is a seizure trigger for her and because we keep a daily journal on all of her seizure activity we can see trends.

Teeth!

The good thing is 3 months ago when Emily would have bad days she would have over 200+ seizures on top of her spasms. The past month or so during her bad days she is only having 20-30 seizures! That is a huge improvement! The only change we have made is wean her topamax.

Every time we decrease a med we see improvement. She gets her last dose of topamax on New Years Eve. We will be bringing in the new year one less med!!!

She loves the computer!

Another good thing is we finally got speech therapy approved and found a ST in our area to take her case! I am told she is the best and is very hard to get.

We have dropped her occupational therapist for now. The therapist told us that we over-medicate Emily and that every blink of the eye we see seizures (prob because we do!!) we spoil Emily, the list goes on and on. This was a fight I did not have the energy to fight and in our little country town there are not any other OTs right now. So she is getting PT twice per week, Speech once per week, and vision once per month.

Really into something!

Oh I almost forgot! I don't want to say this very loud but she has been sleeping 6-7 hours at night! Normal people sleeping time!! WOO HOO!!