Archives for April 2011

I was so thrilled that the peds nurse in the Radiology department was hung up with another child today because we were given the option to make an attempt at her abdominal CT without sedation.  Hannah was exhausted, but I jumped at the opportunity.  Worst case, it wouldn’t work, and we would just have to wait longer for the peds nurse.

Hannah did great!  They secured her in a contraption that swaddled her body so she couldn’t really move her legs, but they let me stay with her the entire time.  I held her hands above her head (as I was instructed), and I sang “blackbird” to her a few times while she was moved in and out of the CT scanner.   Singing worked like a charm, and she had a smile on her face the entire 5-minute procedure.

She did great!!    Hopefully we get the results next week.   But I was so thrilled to avoid sedating her for this!

We have a lot of things that we need to do before we go on our trip to Disney World in just 11 days!   ELEVEN days!   Yikes!

Later this morning, we are going to go to the hospital so Hannah can get a sedated CT scan of her abdomen.  I’m fearful that her spleen and liver have actually enlarged over the past year, which would mean that the Cerezyme isn’t working as well as it did.  Also, her latest marker numbers from her Cerezyme were starting to rise above normal again.   It may be time to raise her dosage from 800 units even though she is at the right dosage for her weight.

I’m nervous about her being sedated, big time.   After what happened last summer, I’m convinced that her movement disorder was brought on by oversedation when she was hospitalized.   So I plan to have a big talk with the team doing the CT beforehand to make sure they use as little sedation as possible, just enough to keep her asleep while she is in the CT scanner.

She has a PT appointment scheduled after the CT, but I am not sure we are going to make that one.   I really, really want to find out the status of getting her stander, however!

Tomorrow, we go to try on her new DAFO braces…finally!   We first got fitted for them back in December, and then those fell through the cracks, and she was refitted last month.   She NEEDS these braces.   She wants so bad to try and stand up, but her ankles and lower legs are so weak, they give way in just a few seconds.  Hopefully with these braces, we can actually start working on building up her muscle strength in her legs and lower part of her body!

Friday, we have a meeting with our early intervention OT for an evaluation.   We NEED to get her ready for transition to the school district.  We start that process next month!   We have been trying to get this appointment scheduled for months — either she can’t make it, wrong date is scheduled, or Hannah just isn’t up for it because she is sick.  Keeping my fingers crossed about this one!

Next Monday is her Cerezyme.

Next Tuesday she goes to her first dentist appointment!   Even though we have the nurses use the oral Toothettes, we have noticed some decay starting on a few of Hannah’s teeth.   This dentist has quite a bit of experience with special needs kids, so I’m really looking forward to seeing how this appointment works out.  Because it is during Ethan and Abby’s spring break, they are also going to go for a checkup as well.  I’m sure having her big brother and big sister there will make things much easier!

Then next Thursday, just a couple of days before we leave for Disney World, Hannah has a home appointment with her early intervention PT, whom we love!  She has pushed Hannah harder than any other PT we have ever had, yet Hannah works the hardest for her.  I know that having therapy at home for Hannah is a HUGE positive for her because she is working in a place she is totally comfortable in.

In between all of this is closing escrow (hopefully) on our new house, packing for our trip, a couple of appointments with Hannah’s development therapist, and Ethan and Abby home all next week for Spring Break!

Lastly, we are breaking in more new nurses.  Argh!   We have two new ones this week, and I’m hoping that they are a good fit for us.   If not, we will be working with more next week, I’m sure.   We NEED the stability of good nurses again.  It has been months since we have been able to have a good team that we know will show up each day.

A week from Saturday, 4/23, it is off to Disney World and our trip of a lifetime!

As familiar as I have become with ADD and ADHD over the past few years, I am starting to wonder if I have developed stress-induced ADD.

Yeah, I know, it isn’t a real diagnosis.   But I feel like I fit the symptoms to a “T”.   I even googled it, but I couldn’t find anything that fit other than my favorite word, “overwhelmed.”

• Trouble concentrating and staying focused – Check!
• Hyperfocus (Hannah’s medical issues) – Check!
• Disorganization and forgetfulness – Heck yeah, big time check!
• Impulsivity – Check!  (But may be ‘pre-existing’ to be honest)
• Emotional difficulties – Hmmmm, maybe.

I suck at organizing these days.  I mean, I wasn’t great at it in the first place, but these days I feel completely lost and disorganized.  I never really felt settled here in Vegas, even though it is coming up on a year, because as soon as I moved here we had Hannah’s severe medical issues and recovery from the moment the mediflight ambulance landed.   We never unpacked this house completely nor made it a home.  Very few pictures on any of the walls, things still in boxes, and very little sense of organization here.

I keep hoping that once we are in the new house and that I get to start over with a fresh, clean slate that I will be able to start getting the feeling of a better handle on my life and responsibilities because right now I feel completely lost.    I have 500 things going on in my mind at a time, 100 projects or things I need to start working on, and 50 must-do things that I seem to keep forgetting to do.

I miss feeling productive.  Sounds stupid, probably.  But I don’t feel productive at all these days.  I feel like I am always trying to catch up, cover, and just do enough to make it through to the next thing.  I miss the feeling of having a ‘content’ life.  You know, things in place, routine, and just a sense of organization in some aspects of my life.

I really, really hope that once we settle in the new house next month (we should hopefully close escrow this week), getting Hannah’s nursing situation finalized with a good team of nurses, and get pictures up on the walls again that I will finally be able to start focusing more on what I need to do.

These past four days or so have become a total blur to me.

Daddy had to go out of state for work, and I was on my own with the three kids.   We had a shortened nursing schedule each day because Daddy also was out of town last weekend, and I needed help on Sunday.   Definitely not the ‘norm’ week for Daddy, as he usually goes out of town just a couple of days each month!

So I was responsible for everything – mornings including getting the kids up and ready for school (never fun) as well as homework, dinner, and nighttime routines.   And despite the exhaustion I felt this week, it went relatively smoothly and seamless with the kids.

Since we lost our two favorite nurses a couple of weeks ago, it has been a challenge trying to find new nurses to complete our 6-days-a-week schedule who just “fit” into our household.  So far, I think we have just a couple of days covered.   They worked 8 to 4 each day, which basically gave me enough time to get some sleep once they got here and then it was time to pick Ethan and Abby up from school and get them home.   We were all on our own for getting homework done as well as meals for the past four nights.   Usually we have a nurse here from 8 to 6 each day so there was always time for me to work with Abby on her homework as well as to start dinner.   Also, Daddy is usually here by that time so I had a partner to share this with.

Hannah has not been herself this past week.   I think it is a combination of being a bit under the weather as well as having to adjust to a bevy of new nurses.  There is a horrible sense of guilt that I feel knowing that I have to leave Hannah alone with a new nurse just so I can get some sleep after being up all night.

We even had an incident with one of the new nurses who let Hannah get so upset that she was in the beginning stages of hyperventilation.  Hannah had not been sleeping well, and she was beyond exhausted.  I only was aware of it because I happened to get a phone call that woke me up from sleep.   I heard the uneven and rapid breathing downstairs and went quickly downstairs.  It took me a while to calm her down, but I finally was able to get Hannah relaxed and she fell asleep.   It broke my  heart to see her having a definite increase of seizure activity and trying to catch her breath while she was fast asleep.

My in-laws are coming to pick Ethan and Abby up later this morning so they can have some fun with their cousins this weekend, and our only remaining regular nurse (our previous Monday nurse) is coming to take care of Hannah today  (she is good with Hannah).   Daddy is due home in about 15 hours, thank goodness!

It was crazy how much of a blur this past week was.  I don’t feel like I got anything accomplished in the house at all except for maybe washing a few dishes and med syringes.  My entire focus was making sure the kids stayed on schedule each day and were taken care of (and we even watched a movie on a school night!).   I know I took a few showers at some point during these past days, but other than that, I can’t think of anything else important LOL!

We leave for Disney World in just a couple of weeks, and I feel like I have done very little at this point!   Not only that, but we should be closing on our new house next week, and we get to start bringing stuff over and getting the new house ready to move in mid May.  Finally, Daddy and I are celebrating our 14th wedding anniversary in just 10 days – fourteen years!

We have a lot of exciting things coming up in the next two months, and I am so glad to have Daddy back home so we can start focusing on the fun and good things coming up.  He really is my partner, and wow, when he is not here, I feel like I am only a shell of myself because all of my energy is focused on the three kids!

I ran out of diapers upstairs tonight.   Being too lazy and tired to go downstairs, I found some of Abby’s old pullups in one of the baskets up here.   Since they are the same size as what Hannah would be wearing now, I used them.  Perfect fit.

But then it hit me.  Hannah is almost three years old.  Had she been on a normal development track, she would be potty training right now.  She may even likely be wearing pullups at this point.

Somewhere along the line over the past year or so, I stopped comparing what Hannah should be doing versus what she is doing at this point.  Even though I see the differences between Hannah and my younger nieces, I don’t correlate them to an age of development.  It is more like, “Oh, look what Emi is doing now.  Hannah can’t do that.”

I don’t know why seeing her in these pullups is so emotional for me.  I guess I’m looking at her a bit differently tonight.  Seeing her long body (almost 36 inches) and that face that is no longer baby or even much of a toddler anymore.

She is definitely becoming a little girl.   I see a little girl in a body that is broken but a spirit that soars.  I see a little girl who is almost completely nonverbal but yet has the most expressive facial expressions where you can interpret what she wants.  I see a little girl who has captured my heart in a way that I didn’t know was possible.

She will be three in just a few months.  THREE years old!  For those of you who have been on this journey with us from the beginning, you know how awe-inspiring it is to know that she has come this far.    My sweet little girl.