We met with Hannah’s neuro yesterday.

Even he noticed that Hannah seemed more “lethargic and loopy” compared to her last visit with him a couple of months ago.   So the plan is we are going to reduce the Klonopin back to where we were at a couple of months ago which is 2 mL, 2mL, and 3 mL daily instead of 3 mL three times a day.   Hopefully in a few weeks, we will see Hannah get back some of her independent spirit and drive to crawl and play with her toys instead of just wanting to be held all day.

We are going to hold off on the sleep study at this point because I don’t feel her seizure activity is very active while she sleeps these days and because we really want to optimize her Klonopin to a stable level before we start playing around with other meds.   I feel comfortable with that decision, although once we move to the new house in a couple of weeks, we are going to start charting her O2 sats overnight to see if perhaps she needs to be on oxygen at night and let the pulmonologist know when we see him in a few weeks.   (It is difficult to do it now because the equipment is downstairs, and the oxygen concentrator is not portable enough to bring up and down the stairs safely).

She was definitely a bit more alert and happier today.   The Cipro has definitely started working to help with that and also her secretions which are already going back to being white and clear instead of yellow/greenish and thick.

We will meet up with her neuro again in a couple of months to see where to go from here.   In the meantime, I’m still going to work to try and get Hannah an appointment with Dr. Sanger, the pediatric movement disorder specialist from Children’s Hospital Los Angeles.   We also have appointments with her pulmonology and GI doc within the next month so we can also work on the O2 sats and reflux issues to help make her more comfortable.

Hannah also has her big evaluation with the school district in a few weeks so we can get her ready for transition from Early Intervention in a few months when she turns 3.   On a very sad note, we lost our EI service coordinator to a new job just recently – Hannah really bonded with her, and I hope that she can come visit with Hannah once we get settled as a “playdate” and not for “work.”

Lastly, Hannah’s stander came in today.   Metal blue (although I could have sworn I ordered a different color, but oh well).   After meeting with her orthotist today to do a followup on her leg braces, I think working with the stander over the next few months will also help strengthen her core as long as the decrease in Klonopin does as wel hope — give her more alertness, balance, and less of a drunk feeling!

We are back home from an amazing, incredible, emotional, and life-changing trip at Disney World and the Give Kids the World resort.   We are all exhausted, Hannah most of all.  The trip definitely wore her out, and it will be good for her to get back into a routine after a jam-packed week.

We have so much unpacking to do, and I have almost 900 pictures to go through!   We took at least 700 on our own and then there were the 250 pics that the Disney Photopass photographers took and the few dozen that they took at Give Kids the World.

I can’t wait to share all the details, but for now, I just want to share this one picture for now.   THIS was the reason we wanted Hannah to go to Disney World for her wish.   The look on her face when she met Mickey and Minnie (3 times each!) was priceless!   Thank you Make-A-Wish for giving our family a lifetime of memories and giving Hannah the chance to reach out and touch Mickey and Minnie!

We finally got the temporary stander today.   Ours is still “on order,” but after four months, they found one for us to borrow until ours comes in.

Hannah took to it immediately!   She stood over 15 minutes without any fuss or fight, which is a heck of a lot longer than she ever did on the trial stander in PT.  Obviously be in her home atmosphere is HUGE for her!   We tested her out at the different heights where she can either stand upright for maximum benefit or if she is tired, we can lower it a bit so she doesn’t have to work as hard.

I will admit it caught me off guard to see how tall she really is now!  I think at last check, she was just shy of 36 inches.  But seeing her standing there, comfortably for quite a bit, was just awesome.

Our home PT from early intervention is coming by on Thursday to put us into a schedule so we can build up time without stressing her out.  Between the stander and the braces, she has taken to all of this in stride!   The key, it seems, is to do everything at home LOL!

We finally got Hannah’s leg braces in on Wednesday late afternoon.   So we took them to physical therapy yesterday so we can start working with them.

For the fourth session in a row (second at the clinic), Hannah had a FANTASTIC physical therapy session.   She worked incredibly hard, didn’t throw a tantrum (until she was exhausted, which was at the 45-minute mark).  She did great!   Especially since her PT put her new braces on her legs.  She didn’t even really fuss!

Her PT worked on getting Hannah to sit up on a bench without any back support.  All she did was hold down her feet, and Hannah was able to steady herself on the bench in the seated position for almost 3 minutes at a time.  This is amazing for her!   It is incredible what having complete leg support can do for her.   She hasn’t been able to balance on a seat by herself for any length of time for many months.

Then, we worked on having Hannah stand up.  Yep, my girl was standing up!   She was completely supported by her PT, but Hannah did all of the work.  Before her braces, she would only be able to stand up for about 5 seconds because her ankles would roll almost immediately and dramatically.   Now that her ankles were completely supported as well as her legs, she stood up and played with the toy for a few minutes, multiple times!

I was so so so so proud of her.  She really worked hard, and this is so wonderful for her tone.   She has lost so much tone and balance since her hospitalization last summer that I didn’t expect her to be able to get to this point so quickly.   She really wants the mobility, you can see it in her determination!

I cannot wait until we get the stander (whenever the heck that may be) because using the braces with the stander is going to be the ultimate best thing in the world for her body!

Friday evening, our family was invited to join in the fun at the kick-off at the Knight Rider Festival here in Las Vegas this weekend.   We were thrilled to support this fundraiser, as we have directly benefited from the Children’s Miracle Network.

The festival was produced by the husband of an amazing mom I have met here in Vegas.  Their daughter, Jobyna, is about 6 months older than Hannah, and she has her own myriad of symptoms that they are working to try and understand.  She is also an absolute cutie!

I feel a total “You get it” connection with this mom.  It is so nice to be able to open up over a lunch date about what we are going through with Hannah, share resources here in town, and just dote on our daughters in a way that very few people can do.

Back to the festival…

We were invited to go back stage to hang out with the family as well as get to meet some of the celebrity VIPs that were participating in the event.

Hannah was not her usual social self, as she was just beyond exhausted since she had not taken her nap yet that day (and it was already almost 5 pm!).   We took a bunch of pictures, and every single one shows Hannah just not a happy camper.   She actually ended up falling asleep on Daddy’s shoulder soon after the event started.

Ethan was absolutely in awe of meeting Las Vegas Mayor Goodman, and he couldn’t believe that he was having a one-on-one conversation with him backstage.  The mayor enjoyed Ethan so much that he gave Ethan his VIP access pass to the event!   Ethan was so incredibly proud showing off this pass because he knew it was one of a kind.

Abby enjoyed watching the dancers and showgirls get ready to perform.  I think she was in love with the dancers outfits because they “looked so cool.”   It was really neat because one of the dancers turned out to be the mom of one of Abby’s school friends!

I think the most humorous part of the evening was when I had to force Ethan to take a picture with the dancers and showgirls backstage.   I mean, come on, what 10-year-old boy would not want to be surrounded by 7 or 8 beautiful woman!   I know someday he will thank me for this picture.

Then it was time for the show!

Since Hannah had already passed out, Daddy took her to the other end of the street.   Ethan, Abby, and I were front and center while Jobyna’s dad (and the show’s producer) brought out about 15 KITT cars and quite a few celebrities associated with both the 1980s show and the 2010 show!   Abby cracked me up because she was able to touch one of the cars, and she proclaims, “I’ll never wash this hand again!”

I loved that the kids were made to feel so special, being backstage and all, even though Ethan felt that because he had the mayor’s VIP all-access pass that he should be allowed to get into the KITT cars and also to go on stage!

 

 

 

Ethan giving Hannah a “lesson” in opposites while playing with her new Mickey that the Make-A-Wish grant volunteers gave her. She loves it!

What is really exciting about this video is that not only are her movements lessened since the increase in her Klonopin, but she actually reaches out to grab Minnie Mouse during this video which is something she has not tried to do in a very long time! She will always reach for things down low in front of her and stationary, but she really wanted Minnie and reached her arms out and up.