Frustrated & Flattered

FRUSTRATED

I LOVE seeing our babygirl like THIS!

But the norm lately, has been THIS:

She does look pretty precious sleeping though!

But, I want, and NEED, Jocelyn to sleep more and sleep better at night.

She will be three on March 22nd ... THREE! So this whole waking at 2:30am, 3am or 4am business (the time always changes but its always way too early!) and then being so tired after breakfast that she can't even cry about being tired?

Its not working.

And I'm sick to death of it.

 

The days are too long and we have too much to accomplish without wasting away the day sleeping.

Yesterday, Jocelyn woke at 2:30am and I was up and down with her until 5am when I finally said forget it, lets get some water and food in you. Come 7:30ish, she was so tired that nothing could keep her awake. She slept from 7:30ish - 11am. At 11am I went into her room to wake her because hello, it was now time for more water and lunch!

It took thirty minutes to wake the princess.
And she's not even a teenager yet!

This morning was a repeat of getting up early but she triggered at 4am ... or at least that's when I heard her. She woke me with giggles (and I suppose she thought that was a better approach than the morning before). It truly is difficult to be angry or upset when your daughter wakes you with giggling.

We are pretty confident that her lack of sleep is because of the brain damage. The brain bleeds damage some pretty integral parts in there, one being the pineal gland.

We are already giving her 5mg of Melatonin and even 1mL of Valium to help with any muscle spasms. I suppose soon I will again have to call the neurologist and inform them that we might have to try something else. I hate to add more meds because I just got her off several different kinds (ie prevacid, etc). Its like everytime I wean her off one, we add another one. And I say wean her because the medical field does a poor job of reevaluating medication usage ... they just add and add without thought to maybe "hmmm, she might not need this anymore."

So I guess I will do it!!!

 

I may be more stressed about the whole sleeping thing lately (besides the fact that the hubby's been gone, I need sleep and this has been going on for 3 years ... yea I know ... those are enough reasons), but we will be trying a new preschool in an actual school district here in a few weeks (more on this subject soon!!!) and there is NO WAY she will succeed if we can't even get sleep.

 

I know what many of you are thinking, "She will adjust" and "she will get on a schedule" and "she will get worn out and probably sleep better at night." Trust me, I've been trying to get her, and keep her, on a schedule from day one! Not to mention, we've tried the preschool thing outside the home for a month and she never adjusted.

 

We will just have to try, wait and see ... that's all you can do!

FLATTERED
Yesterday, after we had physical therapy, Jocelyn and I went swimming and two things happened. Oh, before I tell you about the "two things," let me tell you about our PT session.

Little miss fancy pants not only crawled the length of the therapy room once, but TWICE and even right out the door and into the hallway!!! Hallelujah!!! Now, we used sesame street/Elmo as her motivator, and it took her about 20 minutes, but it matters not -- SHE DID IT!!!

I felt like the richest mama in the world!

 

Now, about the two things:

 

- ONE -

Before we even got into the pool, we had to get dressed of course. Jocelyn and I have not been swimming much because we both were so sick. Now that we're better, it was time to get back to our pool therapy of 2x's/week.

 

I went to put my swimsuit on, and instantly I became THAT mom!!! You know, the kind of mom that other kids look at and go "Oh my god I'm so glad she's not MY mom!!!" My swimsuit had totally grown! Seriously, its a tankini and the top was so big and loose that at any moment when I moved a boob was going to fly out and say "HEY!!" Then, the swim bottoms looked like I took a poo in them. I looked in our bag and was relieved when I saw that I also had board shorts. Unfortuantely, when I pulled them on and cinched them up as tight as they would go (thinking that was going to be my saving grace!), nothing happened. Once I let go ... BAM! They just dropped to the floor!

Really? Was I THIS much of a chubby bunny??

 

We still went swimming because I promised Boogie, but it was an adventure to say the least.

- TWO -

While we were swimming, we met a lady named Emily and her son named Ethan. Ethan is 21 months old and during delivery, he suddenly suffered from a massive stroke. His stroke was so massive in fact, that if an adult would have incurred one just like it, they would have more than likely have died.

Anyways, after chatting for a while, Emily said that it finally dawned on her who Jocelyn and I were. She told me how learning about our story and success through the Easter Seals Capper Foundation is what made them want to get therapy there. She said she found our pictures and story for the Easter Seals Donor Reception from 2011 and even watched our Video. She told me "after learning about you guys, I thought if they can do it ... we can too." She went on to say how much of an inspiration we were, etc and how she also found our story about using the iPad for communication in the Topeka Journal and even on a website called "Therapeutic Resources Blog."

I was floored ... felt a bit stalked ... but floored in a good way.

I totally had to go looking for our article on both sites she talked about and yep, there they surely were. I absolutely cried the entire 7 minutes of the video ... again! Its hard to re-live all that in a snapshot and see Boogie so small.

I guess its true, you have no idea the impact you make on a persons life ... even a complete stranger.

Lots of true, feel-good moments yesterday!