Archives for April 2010

Daddy has looked at about a dozen home rentals in Vegas this past week.   Our “plan” was to get a house in the school zone we wanted (the highest rated public school in Vegas) by paying what we are currently paying for our mortgage/property taxes.  We want to be in the Green Valley ranch area (Henderson).

However, plans never go as, well, planned when it comes to us.

First off, we have some requirements which limited our search:

• Need a rental that accepts pets (we have two dogs and one cat).
• Need a rental that has either all bedrooms on the same floor or has only one non-master bedroom on the bottom floor.
• Need a rental that has 4 bedrooms, 2 baths.
• Need a rental with tile in much of the downstairs because of the dogs and their starting-to-age bladders.
• Need a spacious doorstairs floorplan so that Hannah is able to use her walker and gait trainer.

There were only three houses that fit our criteria for rentals in the school we wanted.   We were dreaming I guess…  the first one was vandalized inside, the second one had a homeless person living in it, and the third one was in really bad condition.

Obviously, we had to downsize our ideal situation since the amount of money we could spend would not fit the homes we wanted.  So we went with “Plan B” – the second level of school ratings (2 schools).    Only a couple of home offerings in this one as well, but one backed up to a wash, and the other backyard backed up to an apartment complex parking lot (with only a 6-foot back fence).  These homes were “okay,” but I just did not feel comfortable having such easy backyard access to our house.  We even upped our rent allowance $200 a month to see if it would expand our options. There was actually only one home that was decent, but when we tried to figure out where to put everyone, it just was too small (about 900 sq smaller than our current house).  Again, money prohibited us from renting a home that would really fit our criteria.

“Plan C” – not as great school (average), but good neighborhoods.   In this area and the $200 monthly bump, we had about 5 homes to choose from that he liked (none with our pre-$200 bump).  The irony with this group is that they are around the same size as our house.    After talking about it last night (and about 50 pictures), we chose one of them.  It is at the end of a cul-de-sac (which I like), nice neighborhood, tile floors downstairs where the dogs would be, great condition, and because it is a corner unit, it has a nice-sized backyard.

I guess we were naive thinking that we would be able to get a decent rental for the amount we wanted to pay.  We figured so many homes were in foreclosure that people would be renting for dirt cheap.  But the reality is that with so many homes in foreclosure, there are very few people renting now.  And those that are renting are trying to recoop money to pay their mortgage.

Sadly, renting a home is going to cost us almost twice the amount of money each month than purchasing a new one!  But since Daddy still has no job right now, and my part-time job is only bringing in so much, there is just no way we could purchase a home right now.  So we figure we just make it through the 1-year lease, and then we can find a new home in the school zone that we want when we are ready to buy a home (if we still want to move them).

Daddy is putting in an application for our top choice of “Plan C” tomorrow.  Hopefully it will get accepted.  If not, we have chosen our second and third “Plan C” homes as well.

Yep, too tired to even type out the word exhausted.

I have been trying for almost a week now to post on here, but each time I start, I just find myself with no energy to even chat.

Daddy has been in Las Vegas since Monday trying to find us a house rental.   He actually drove his car over there, so for the first two days, he was on the road.

So I have been a single mom since Monday morning.  I have a new appreciation for my single parent friends, especially those with multiple kids and/or special needs kids.  I’m beyond exhausted.

It probably would not have been so bad if Hannah wasn’t sick with a cold (congestion now for over a week) so she has been incredibly clingy and cranky.  On top of that, she has not been eating much, so she has been waking up at 3 am to 4 am every single morning because she is hungry.  That part is not really new, but before Daddy and I could tag team where one of us would go down to get the bottle and the other would keep her in bed.  But since I am alone, I have to bring her down with me because leaving her in her crib would cause a tantrum, and I sure as heck can’t leave her in my bed alone.

She would end up falling back asleep about 5 am to 5:30 am, and then I would have to wake back up at 6:30 am to get Ethan and Abigail ready for school.  (Again, with Daddy here, I usually deal with Hannah during the night and he takes the kids in the morning so I can sleep).  After the kids get on the bus at 7:30 am, I crawl back into bed and end up getting right back up because Hannah gets up shortly after that.

So I think I have been averaging about 3 to 4 hours of interrupted sleep a night.  I ended up canceling all of her therapies this week because either she was incredibly cranky (so why bother) or I was just too tired.  The only appointment I kept was her ENT appointment, and I was pretty much a zombie during that as well.  (more on that later!)

If I can just get Hannah to sleep through the night again, things would be better.  Her cold is getting better though, so there is hope on the horizon.  At least this morning I was able to doze a bit longer because I had all three kids in my room watching a movie while I stayed in bed.  It helped having Ethan and Abigail there to keep an eye on Hannah playing with her toys.

Daddy comes home on Wednesday.  Thank goodness.  Boy, do I miss him!!

And no….nothing on the home rental front yet.  That is another nightmare for another post!

Okay, well that is just a tad bit misleading, but Hannah’s picture will be running in the Boston Marathon!

For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon.   Each runner pairs up with a Genzyme patient to help raise money for NORD, the National Organization of Rare Diseases.  

We have been paired up with a wonderful woman named Mandy, who is going to have Hannah’s picture on her shirt during her run!  How wonderful is that!   The rest of their team is also paired with patients with Pompe disease, Niemann Pick B, and Canavan disease (all lysosomal storage diseases).

When I was told that Hannah was one of the patients chosen for this event, my heart just swelled.  It may not be as big a deal for them, but it was huge for our family. 

Everything I have done over the past 15 months, working with Genzyme, researchers, families, etc., has been this intense personal need to make Hannah’s life purposeful.  I know there is a reason that she is here and a reason she is doing so well considering what the alternative could be.  

Having her story shared with so many people, creating awareness for this form of Gaucher’s disease (when so many people think that it is treatable like type 1 when it is not), and trying to make a difference and forward progress of research of this disease — this is just a little bit of proof, to me way, that someone is listening.  

Because of Hannah, people are becoming more aware of this disease.   Because of Hannah, renewed enthusiasm has been shared for kickstarting the process to create more awareness, raise funds, and hopefully, my ultimate goal, find a cure for neuronopathic Gaucher’s disease.   To say there is a long way to reach that goal is such a hugely gross understatement, I realize that.  But it is better to keep moving forward to try and reach your goal than to sit around and not do anything.

Thank you Mandy, Kathleen, Phillip, and the entire Genzyme Marathon team for taking Hannah and the other kids you will be representing on this fantastic journey with you.  Thank you for helping enlighten people with our stories.  I hope you are all successful in your run as well as raise a lot of money for NORD with your sponsorships, Online Silent Auction, and the NORD Donations page.

We went to the festival at the kids’ school yesterday afternoon.  

A mom that I have known since Ethan was in Kindergarten with her daughter (he is in 3rd now) asked me about Hannah.  “How is she doing?” she asked me.  She knew about Hannah’s condition, so I knew she was interested in more than “just fine.”

I found myself wondering, again (as I have had this conversation with myself quite a few times lately), how do I really answer this question?

When one of her medical team asks me “How is she?”, well, it is very simple to answer because I can give them to truth in medical jargon and that is what they want to hear.

But I really don’t know how to answer when someone like an acquaintence or even a friendly acquaintence asks me that question.  I can’t say “She is doing great,” because she is not. 

I don’t want to list the current issues we are dealing with by saying “Oh, well she is on a liquid diet now because she has swallowing dysfunction and weakness in her throat and vocal cords.  Oh yeah, and there is the hypotonia so she can’t walk yet and has trouble using her muscles.  Can’t forget the significant global developmental delays that she has, for which we have 5 different therapies a week.  Then there is the significant dysfunction of her eye movements where she has difficulty moving them not only up and down but side to side.  Lastly, there are about 15 other symptoms that she has with this disease that we are still trying to balance her quality of life with…”  Can you imagine the look on their faces?

I don’t do pity well.  I don’t want to tell them how difficult it has been and all the issues we have had to deal with.  But then again, candy coating it really defeats the purpose of trying to create awareness for this disease as well.

Where do I draw the line?  What should I say?

I answered her with “She is doing better than anyone expected.”  Which is true. 

Such a simple question to ask… such a difficult decision to answer…

I find that when things are moving along without a lot of drama that I don’t find as much to write about.   It is not for lack of anything really to say, but it is more that the “chaos” in our lives is more centered around moving to Las Vegas in June than Hannah herself.

But that does not mean that she has not made any strides this week!

• Hannah’s latest platelet count is 218,000 – normal!!!    For the first time in her life, her platelets are normal (150,000 to 450,000 is normal).  For a baby that was born at 6,000 and did not reach 100,000 until she was around 1 year old, this is great due to the Cerezyme!
• Treating her as a toddler instead of an infant.   Daddy and I have made a strong effort in the past few weeks to start treating Hannah less with kid gloves and more like a toddler.   Last night was our first attempt at putting her to sleep in her crib while she was awake (instead of falling asleep on one of us).  She cried and screamed for about 20 minutes before we brought her back to our room.  Tried again tonight — with the addition of a second paci and a little people in each of her hands, she fell asleep…in her crib!  This is wonderful!
• Screaming and crying.  We have noticed that she is learning to control her breathing much better during crying, laughing, and screaming.  Even though she does not have a normal “vocal” cry or laugh, she does not seem to hyperventilate anymore during her  tantrum episodes.  Her face will get bright red, and she will get very stressed out (as any kid who has gotten their way since birth and treated with ultrasoft kid gloves would be).  But she has yet to hyperventilate.  We have been pushing the boundaries of how long we can let her cry and tantrum, and we are very impressed with her tolerance now.   It is not quite “normal,” but it is a heck of a lot longer than before.  This is a huge breakthrough for us, both on the medical front and from a parenting front.
• Inability to go from stand to the floor.  Now that she is pulling herself to stand and cruise more and more now, she has gotten into the predicament that she does not know how to go back down to the floor.  She also does not know how to get down to the floor from a little chair as well.  She gets really freaked out, and when we try to move her through it to teach it to her, she stiffens up like a board and starts crying hysterically, as if she is scared of what we are doing.
• Curled toes and the W-sit.  She is also picking up some bad habits which we really, really need to start focusing on now.   Hannah does not know how to sit like a normal child.  She only knows how to get herself into a “W sit.”  This also allows her to go from lying to crawling to sitting and moving.  The W-sit is apparently really horrible on her knee joints, hip joints, and ankle joints.  Now that we are working with a gait trainer and a walker, we are seeing the negative effects of this sit on her walking.  Also, she has started to curl her toes under her feet when going from a sitting to a standing position to cruise or to be lifted up.  It looks so dang painful for her, as she winces as she does it.  We don’t understand why she does not put her foot flat out when she does it anymore.   We need to keep her in her orthotics and shoes much more often during the day to help with this.
• Cerezyme treatments in Vegas almost secured.  Finding medical services has been really, really rough for us.  Actually, finding a pediatrician in Vegas has been really tough!   However, thanks to the wonderful people at Genzyme and Amicus (who both recommended the same doctor), we are in the process of getting the paperwork in order so that Hannah will not have much, if any, of a disruption of her infusion treatments.
• Medicaid finally, sort of!   You know, this Texas Medicaid process has been over a year in the making.  We FINALLY got our medicaid number and Hannah is in the Medicaid system.  HOWEVER, because of a screwup with the person who processed our application, they forgot to put a guardian on Hannah’s Medicaid so the only person who can place orders on Hannah’s behalf is….Hannah!   Sure, just have a 20-month-old call, not a problem!  Such a pain in the butt!   But at least we have it, so even though we have to start the process over again in Nevada, we have the previous acceptance to the program to help our application.
• Formula issue.  I was so excited to get the Medicaid because I was hoping that it would cover Hannah’s formula since our insurance does not.   But guess what?  Medicaid will NOT cover it either?   Why?  Because Hannah does not use the formula with a G-tube or other feeding pump!  Because she drinks it in a bottle, it is not considered a necessity!   Unreal!!    So when we get settled in Vegas, I am going to work on appealing this with our insurance company.

Tomorrow is Abigail’s 6th birthday.  I can’t believe she is 6!   Both her grandparents sent her a check, so she went shopping for “girly” stuff — shoes, watches, lots of lip gloss and nail polish, fake kid nails, jewelry, purses, etc.   She LOVED it!  U was so shocked she did not want any toys!  She actually has some money left, and she wants to get MORE shoes with her money.   The two pairs she got earlier this week apparently are just NOT enough!   Happy birthday, big girl!