but in retrospect, I’m still exactly where I was yesterday.

I finally was able to touch base with the genetics nurse coordinator yesterday afternoon.  Basically, she wanted to know if Hannah would be a “good stick” for the IV based on “my experience.”  She hasn’t had that many IVs in her life, thank goodness.  She had the one when she was a newborn where the did the platelet transfusion whe was two days old.   That one was in her hand.  Then, there was the IV placed in her head for the IVIg transfusion; I think that was six days old.
 
She has had quite a few venous blood draws.  All of the ones done at the clinic downtown were easy and successful on the first try.  However, the one time we had it done at a lab up by our house, it was a nightmare.  Obviously they didn’t have experience with infants because it took 3 different tries on two different days.   It was ridiculous, and I was ready to walk out of there and drive downtown to get it done had the “chief phlebotomist” not been able to do it that last time.  In the future though, we are doing all venous blood work downtown.

The reason she asked was because she was working on setting up our Home Health pediatric nurse who is going to administer Hannah’s Cerezyme treatments after the first one, which will be done in the clinic so they can watch for side effects.   I honestly can’t picture Hannah sitting there for two hours with an IV drip.  Fortunately our Home Health nurse (which is covered by our insurance just as if it was done in the clinic) should be very well experienced with IVs on a baby. 

Then we talked about the port issue.  She was under the impression that we were vehemently against it.  She must have had us confused with another set of parents, because it is definitely something we are considering, as it would make it much less painful for Hannah every two weeks.

She asked what days would be good for me for Home Health.  I told her Monday, Wednesday, and Friday since I have Little Girl A home with me on Tuesdays and Thursdays.  I would hate to waste one of those days with her home for IV treatments because she is going to be starting Kindergarten next year and won’t be allowed to have any stay-home days during the week.

So, information was exchanged yesterday, yet I still have no clue when we are going to even start the treatments.

I’m getting a bit angry that I haven’t heard back from Hannah’s genetics team about when she was to start treatments. Over a week ago, the genetics nurse told me she would get back to me the next afternoon. Of course, she didn’t.

So, I emailed her the next day. No response. It would be one thing if we were waiting on something minor and not so significant. But we were discussing starting the treatment that is going to change my daughter’s life!

Two days later, I finally called her office. “Dr. G. has been out of the office for the past couple of days, but I will make sure he signs the orders on Monday”.  She couldn’t email me just to let me know he was out and that it would be a couple more days?

Did I hear from her yesterday? Nope.

Am I going to get on her again today? You bet your sweet you-know-what.

The thing is that I do understand why doctors don’t get so involved with their patients. First off, I’m sure Dr. G. has hundreds of patients, all with genetic-related syndromes and diseases. To create such a “do anything for this patient” mentality and bond with a patient would be difficult. I get that.

I get that Hannah is just “another case” to him, even though he admits that he had to do a lot of research on Gaucher’s because he wasn’t familiar with it — aren’t doctors supposed to love a challenge? I get that.

I’m sure he and his team have dozens of phone calls and emails from family members wanting things done immediately, if not yesterday, and there is only so much time in a day. I get that.

But you know what? As much as I do understand all of this in my head, it still pisses me off to be pushed aside and not given answers when they say they are going to give them.

There is no reason to have me wait two weeks to tell me “we have a diagnosis” when I now know for a fact that the Gaucher’s Disease test results were there before Christmas. Dr. B., Hannah’s pediatrician, was able to pull up the test result and told me the date. Of course, he wasn’t sure if that was theee test result we were waiting for, so he couldn’t tell me the diagnosis was certain. But it was there. When I asked Dr. G. about it, “Yeah, it was ready a week or so ago, but it just landed on my desk.” How many times did I email for an update??? Couldn’t someone just have looked in the database like Dr. B. was able to do later?

Now, I’m waiting again and being pushed off again. The insurance company has already approved the treatments, the hospital pharmacy has already placed the order, now I just need Dr. G.’s group to get it scheduled.

Come on, let’s go. I know she may be just another case to them, but if you say you are going to do something at a certain time, don’t make me wait another two weeks!!!

 I’ve been racking my head for the past week trying to figure out what I can do to earn an income that will allow me to not only work from home but have the flexibility to take the time off needed for Hannah’s Cerezyme treatments, occupational therapy, developmental therapy, doctor’s appointments, and other procedures. Not only that, but I also have the two other kids to consider, as Big Boy E comes home from school at 3 PM each school day.

I thought about going back to medical transcription, but the hours and difficulty getting work before I got put back on bedrest makes that a very unlikely option to make any decent money. Before I left, I was sitting at my computer for 20 minutes at a time just waiting for a job to pop up so I could grab it before someone else did. It was decent money when there were plenty of jobs, but just like other jobs in this economy, most MT work is being outsourced.

I don’t have a talent for crafts to sell, and I don’t do well with the Pampered Chef or similar programs, as I don’t have that many people I’d invite to a party here.

I thought about teaching online, as I was so close to getting my teaching credential when I found out I was pregnant with Hannah. Truth is, I would love to still pursue teaching (at a local school). But I just don’t see that as a reasonable option, at least not in the short term until we know exactly what we are going to have to be dealing with.

So I thought about writing. Outside of blogging, I don’t have much experience writing. Well, unless you count wedding articles that I used to write, but of course, that was online and I didn’t save any copies of those because that was my “former life.” But I do love to write. I especially love to write about topics that I’m passionate about.

The only experience I have that is published is the book I published 5+ years ago about about our infertility and adoption experience in bringing Big Boy E home (oh, if I knew then what I know now – talk about irony!). The book did decent, but basically it was the online journal (before we had blogs) I kept during the four years of infertility treatments and our adoption experience. Honestly, I don’t know if I am even a decent enough writer to get published.

But I figure it would be worth a shot. Now I just have to figure out how to get started!

Because of the holiday, I had all three kids home with me today even though Daddy had to work. From 11 AM to 2 PM, Big Boy E had his best friend over who lives two doors away. During this time, from about 10 AM to 1 PM, Little Girl A was over at her friends house, two doors away the other way. About 2:30 PM, Little Girl A’s friend from this morning came back here to play for the day. Hannah was hanging out with me most of the time and playing in her exersaucer.

Right now, I’ve come into my office to check email, and Big Boy E, Little Girl A, and her friend (who is 4) are all playing Zingo together. Big Boy E is trying so hard to be a good big brother today and playing at their level.

So cute.

Of course, after I originally just posted this, they are all three now on to playing Limbo. LOL

I actually spent the better part of today forgetting that Hannah was sick with this horrible disease.  We had a fun “family” day and went to a pizza place that we like that has carnival games with it.  We used to go there about once a month or so.  We did the same pizza buffet, sat in the same seating room that had a huge wall-size screen movie (Blue Hawaii – Elvis), and we played in the same carnival area and games.  Hannah slept in her stroller, and the kids, Daddy, and I took our normal seats at a table we often sit at.

After that, we had a fun shopping trip at our favorite store, Target.  Little Girl A was so excited because she got three headbands and ANOTHER purse (all for $7, gotta love clearances!).  Let me tell ya, she has more purses than I do!  She is SUCH the girly girl.  Big Boy E got another Sudoku book in the dollar area.   He just loves puzzles.

We left at 10:30 AM and came home around 3:00 PM.  With the exception of the ride home at the end when Daddy and I did talk about it, I don’t think I spent more than 20 minutes thinking about Hannah’s situation during that time.  I just really enjoyed having all my family with me and having such a great day.  Back to the old ways, you know, Big Boy E and Little Girl A trying to get each other in trouble one minute and then loving each other the next.

Even tonight before and during dinner, I find myself doing an “oh yeah that’s right” when something regarding Hannah’s situation pops into my head.  Of course, after the kids got into bed, the first thing I do is jump onto the computer to do some more research (check out my Gaucher’s subpages).  

When I slow down and have time to think, I do find myself gravitating towards this.  But my family, especially Big Boy E and Little Girl A, are a welcome distraction, and I can’t wait to have more family time together.   Perhaps this does get easier over time, especially now that we know what we are dealing with, knowing there is more time than we thought, and especially since she doesn’t have any symptoms (other than her huge spleen and liver that she has had since birth so we are used to that).  I just see her smiling and laughing face and her hitting her developmental milestones (granted, slower than most, but she is still hitting them – better late than never!).

Or maybe this is going to be an “up and down” progress instead of “time heals the wound” process.  Damn, I feel like I’m in unchartered territory here.  It is almost like an “ignorance is bliss” feeling.  If I don’t think about it, maybe it isn’t real.  But I do know that once we start in with the specialists, the treatments, the research, and the other therapies, it will all be smack dab back in my face.

Thank God for my kids and my husband.  They truly do make me happy.

I know that many of you don’t know how to respond to our news, which is probably why we haven’t heard from quite a few of you since we finally did get a diagnosis.

Yes, we received heartbreaking news regarding Hannah. Yes, our lives have now been totally turned upside down with this diagnosis. We have gone from a boring stable family to a family that has to consult with a lawyer in order not to possibly lose our house and assets because of the cost of her medical treatments and now trying to figure out how we will ever save for the kids’ colleges. We have gone from a family who can do things “on the whim” to a family who has to schedule their lives and activities around Hannah’s treatments and doctor’s appointments. We have gone from reading the latest in People Magazine to reading the latest on drug research and clinical trials.

But you know what? We have a lot of hope. We are given a difficult circumstance that none of us has experienced. We have hope that it is type 1, and we will deal with whatever physical symptoms and medical treatments she will need. If she does have type 3, then we will do whatever we can, talk to whoever we can, and pound on every door we can to find a treatment and cure…we have 15 to 20 years, a lot can happen in that time.

Hannah has brought an amazing amount of joy into our lives. I never knew what was missing, but it was her. The way she smiles and laughs, the way she just charms everyone she meets, and the way she gets a huge grin every time her brother and sister come near her. We will fight for her, as a family.

You may feel that saying “I’m sorry” may not be enough or just not know what to say. The only thing I need from you is to know that you are still here for us. Just a simple “I’m here for you” or “I’ll be here if you need me” will give us the strength to fight, as it means you are fighting with us in spirit.

We do love you, and we know you care about us. Don’t worry about “what to say” to us. Just say whatever you feel — even if it is just to talk about what is going in the world, your lives, or whatever.