Archives for March 2011

I couldn’t resist getting Hannah a bathing suit today at Target.  Even though she can’t technically “swim” because of the trach, we want to be able to let her sit go in the pool with us and let her get wet up to her hips or waist this summer and at the pool at Give Kids the World.  She LOVES water, and we just feel we need to be extra careful and not let her get her water in her trach.

I saw this one, and it was just perfect!   I wanted a 2-piece because of her Gtube and enlarged abdomen, but I didn’t want a bikini top kind for the same reason.  Besides, it has a monkey on the front, and that is what Daddy calls all of the kids!

We tried it on when we got home, and it was a great fit.  I got a 5T because bathing suits always ran small for Abby, and sure enough, it was the same for Hannah.

Now I just need to find a floppy hat that will fit her head and cover part of her face, and it will be perfect for the pool!

I’ve been sharing with quite a few people lately about where we are staying when we are in Florida.

The village is called Give Kids the World, and from what I have learned, the only families that stay there are ones who have been granted wishes from a wish organization, primarily Make-A-Wish.   When we were given the opportunity to make a wish for Hannah, I wanted to request GKTW as the place we wanted to stay at.  I have heard from so many families who were given the chance to stay there that it was a once-in-a-lifetime experience because they offer so many activities, character meet-and-greets, and even Christmas every week!.

It is more than a hotel room, we are offered a 2-bedroom villa with a full kitchen, 2 bathrooms, washer-dryer, and loads of amenities.  Knowing that we will have a lot of down time with Hannah, this is going to make things so much more comfortable!  Besides, look how cute they are!

I could write paragraphs about it, but I would rather just share a couple of videos.

1.  A video walk-thru of what the villa looks like (posted by another family, can’t embed)

2.  About Give Kids the World:

3.  Featured on the Today Show:

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17 days until we close escrow on our new house.

25 days until we leave for Florida and the trip of a lifetime.

About 45 days until we move from our rental to our new home.

So much to do.  It is crazy!   Today I spent time working on the medical support part of our Disney World trip — specifically requesting documentation from Hannah’s pediatrician so we can transport her 8 liquid meds and formula on the flight, discussing the needs for our nursing company to have documentation from our pediatrician so that we can temporarily suspend service for that week (and not have a nurse) so that we don’t lose our nursing, and also trying to coordinate our nursing schedule before/after our return.

It also figures that Hannah’s cerezyme treatment lands smack dab in the middle of our trip, so trying to get that rescheduled so that she doesn’t go more than 2 weeks (and a couple of days) is becoming a bit more difficult than I thought.  At first, the scheduling coordinator set it up so that Hannah would have 3-1/2 weeks in between infusions because “they are booked up” — and that is just being dangerous for her!   I hope that there is some resolution because I don’t want her to lose that much time without her treatment.

Also set up a lot of appointments today, early intervention OT, dentist for all three kids (who has experience with special needs kids), and talking to Hannah’s medical supply company about shipping some of her supplies to the GKTW village (especially her formula – 40 bottles!).

I am also working on coming up with a list of rides that Hannah would be safe on.  She really is “medically fragile” and has so many restrictions that we have to consider.  Right now the only ones that are a ‘go’ are Small World and Jungle Cruise, and that is only because we went on them in Disneyland so I know how they go!   Fortunately I am getting help from a good friend who is a WDW expert and others on a Disney board on this so I hope this list increases by just a few rides.

 

 

I dread, dread, dread trach changes.   Both Daddy and I do.  Especially during these past few weeks.

Tonight Daddy went to change out Hannah’s trach (which we do every Sunday), and again, she got upset, panicked, got a spasm in her throat which then Daddy could not get the new trach in.  Then she became hypoxic and turned blue, and it was about 3 or 4 attempts with the smaller-sized trach before we were able to get that one in.  Thank goodness we have the oxygen at home now because it took her a couple of minutes to get her color back even WITH the oxygen this time.

This is a nightmare now!    After Ethan and Abby went to bed, Daddy and I worked to keep Hannah totally happy and calm while we attempted to put the regular-sized trach back in.   We both were stressing out over it.   Fortunately, Hannah didn’t get upset or panic, and it went in very easily this time.

(Read all about this whole stressful process and reasons here)

I hate the fact that we don’t have a caring ENT or pulmo here who are willing to get to know Hannah and understand her unique airway situation as it relates to her disease.  I feel like we have no one to talk to.

I found out last week that Dr. Roy still had not been contacted by Dr. Bernstein’s office, but he is still very willing to come and take over Hannah’s case out here.  So I sent another email to Dr. Bernstein tonight pleading with him to see if this is doable because we are desperate to get Dr. Roy out here to help us figure this out.

I hate, hate, hate trach changes.  I hate that feeling that we aren’t going to get the trach back in time, and Hannah is going to suffer another tonic-clonic seizure and possible stroke like she did last year.   I hate the fact Ethan and Abby have become so used to seeing this and yet still get scared each time.

I even sent Dr. Roy an email tonight asking him what ramifications there could be if we did trach changes every 2 to 3 weeks instead of every week just to limit the possibility of this happening…

Ugh…time to destress because I can still feel that nervousness in my chest.

Hannah and I had the evening to ourselves tonight because Daddy took Ethan and Abby to the Monster Truck Jam.

I loved it!  I really enjoy the time that we have to ourselves, without distractions, because they seem so few and far between these days.

When she started getting tired (around 10 pm because she had a late nap when the nurse was here), I put her in her favorite snuggle position.   She loves to put her one arm around my back and have me put my arm around her and bring her in snuggle tight.  This gives us the perfect position for her to look at me and for me to be able to talk and sing to her.

Yes, I said “sing to her.”   There is no way in heck I have the talent for American Idol, but Hannah thinks my singing is one of her favorite things.   When I sing her certain songs, her face just lights up!   We go from nursery songs like “Twinkle, twinkle” and “Wheels on the Bus” to Glee’s version of “Blackbird” and “Fireworks.”

The way she lights up makes me light up even more!

Tonight, I started singing “It’s a Small World” to get her ready for Disney World.  She LOVED it!   I’ve started putting together a music collection to burn onto a CD with Disney songs that we can start using now in hopes that she will recognize some of the songs when we are there.   She won’t know them word for word, but if it is something that she has heard enough to recognize, then I think it may give her more enjoyment.

I said earlier that today was a good day.  But it just wasn’t the great home inspection.  That was just the tip of the iceberg.

When I picked Hannah up this afternoon, she let me hold her upright, and she gave me DIRECT and FOCUSED eye contact!   Usually when I pick her up, she likes to cling on which usually means she faces over my shoulder or has me give her a little seat with my arms wrapped around her (it gives her more security).

She rarely feels secure enough to be held upright like she did today.  Usually you have the toddler on your hip and they drape their arm over one shoulder and feel secure facing straight ahead — Hannah hasn’t felt that way since she got out of the hospital last summer.

She has no problem with eye contact as long as she is lying down or sitting in a very secure position.  It is when she is having to work harder on her balance that she always tends to look down or behind.

Even Daddy and her nurse were watching her.  It was at least a few minutes.   She felt comfortable being held like a normal toddler, her balance was good, and she looked straight into my eyes and smiled for those minutes.

Does this mean her balance is getting better?  Was it a once in a rare while thing?   No clue.

All I know was I was in heaven!