Trying to adjust to the “real world”

With Hannah’s condition getting back to the baseline she was at before she was hospitalized (and even better in some places), we decided that we need to start getting back out into the real world and doing things as a family again.

After a few attempts out  (few restaurants, shopping, Freemont Street, and a craft festival), we are realizing that it is going to be much more slow going than we anticipated.  Either that or we need to adjust our mindset as to what we can do “out” as a family.

Likes…

• Hannah loves being out of the house (hell, who wouldn’t!).
• She really enjoys looking at what is around her, especially if it is lights and people.
• She loves walking through the casinos with all the lights and sounds (that aren’t too loud for her).
• She loves the water (her grandpa held on to her while he dipped her legs in the pool, and she loved it!).
• Even though it takes quite a bit of strength for her to pull herself to sit up in her stroller, she does it the majority of the time (instead of lying back) because she wants to see what is around her.

However…

• She does not like sitting in a high chair for any longer than a few minutes without either being picked up or being entertained with her portable DVD player.  She will play with her toys at the time briefly, but that only buys us a little time.
• She cannot tolerate much heat or direct sun at all — she closes her eyes, her body wilts, and she just tries to shut down.
• She cannot tolerate loud music, especially if it is pounding loud (like Freemont Street Experience was).
• She cannot watch moving things very well because of her limited vertical and horizontal eye movements — if it isn’t in her midline vision, chances are she won’t see it unless she has time to thrust her head up or down to that area!
• She gets tired and worn out pretty quickly.  Even just an hour or so doing something stimulating is enough for her.   It is going to take some time before we can take a day trip to Sea World or Disney World or something like that — but that is our goal!

The only big drawback is having to lug around the trach suction machine and carrying our extra-large diaper bag (because of all the extra supplies).  There have been a few times that we have had to break out the suction machine during our outtings.  Most of the time she does not need it.   I don’t like having to use it in public because of the incredibly loud vaccum-like noise that comes along with it.  I don’t like the stares we get during these times, but I know people are curious — I am sure I would have been too if I saw something putting a suction tube into someones throat!

Oh and sidenote…We realize that she can STILL have breath-holding spells while be trached!   The problem we had in the car where she would get upset being in the car for a too-long-for-her time (10 minutes or an hour, it all depends), and she would start to hyperventilate or have a breath-holding spell?  We found out today — that can still happen even with the trach!   We were driving to Caesar’s Palace to take a walk around the forum shops (getting Hannah out in what looks like the outdoors but is still indoors).   She started getting really cranky about 5 minutes before we got there.  Sure enough, about 1/4 block from the entrance to the parking structure, we had to stop the car so I could get out and get her out of her car seat and into my arms.  It was only a 2-minute mommy-daddy hug-love moment before we could put her back in her car seat, and she was fine from that point in the car ride on.

But we also realized that when she throws a tantrum (possibly leading to a breath-holding spell), that we cannot hear her because she does it silently.  So during our window-shopping and people-watching walk around the Forum Shops today, we were all constantly looking at Hannah to make sure she was okay (a few times she was starting to get cranky).  Definitely does not make it very relaxing, but we will do what we have to in order to get out!

I am truly amazed at how wonderful Ethan and Abigail are when it comes to us having to limit certain activities or events because of Hannah’s reactions and limitations.  They are just so good with her, and they also keep an eye on her to make sure she is okay.   This is becoming the ‘normal’ for them around Hannah, and Ethan told me recently that he didn’t care “as long as Hannah gets to go too.”    Even my nephew (who is just a bit younger than Ethan) is starting to understand “the way it is” when we all go out with Hannah.

We have taken advantage of having nursing on Saturdays with Ethan and Abigail, as we took the two of them to breakfast and then to the Children’s Museum this weekend.   They were able to run around the two floors of the museum and play with Daddy and I without having to have our attention always focused on Hannah.   Daddy and I had a great time with them, and I didn’t feel guilty because we were only gone a few hours.  But I know that the kids appreciated having this one-on-one time with them.

I can’t wait for the weather to get cooler (still in the upper 90s to low 100s during the day) so we can start adding back things like the park and other outdoor events.