Day #2 completed

This has been a whirlwind two days, let me tell you!

There is so much to talk about, but until we get our final wrap-up meeting on Friday with Dr. Sidransky, Dr. Goker-Alpan, and their team, I’m going to just wait. 

We are two days into the four-day heavy-duty testing for Hannah.  She has had a swallow study, sleep-deprived EEG/ABR, echocardiogram, skeletal xray study, EKG, and a neuroopthalmology exam.  Tomorrow is our scariest day, the brain MRI, because Hannah has to be sedated.  I’m scared to death about this, but I know this is important because of the possibility of hydrocephalus.  She also has a neurology exam and a CT scan tomorrow along with the brain MRI.

I am SO glad we came here.  This really was the best, most incredible decision.  Not only are we learning so much more into Hannah’s version of her disease, but many questions have been raised regarding a variety of symptoms, and they are following through so completely on each of them.

Dr. Sidransky is absolutely fabulous, as is Dr. Goker-Alpan and their coordinator, Catherine.  Actually, almost every single person we have met from the neuroopthalmology to the EEG technician to the people here at the Children’s Inn really show how much they care about Hannah and her care.  Many doctors just see “the patient,” diagnose, and move on.  We really feel like they are looking at Hannah as a little girl AND a patient, and they are showing her so much care and personal attention.

Most importantly, Hannah so far has handled this amazingly well.  After every procedure, she is always smiling and bounces back so fast.  My little girl amazes me every day here.  I am just so in awe of her strength and her ability to do what needs to be done and just move on.

Getting ready for Day #1, NIH

Our appointment with admissions at the NIH is in 90 minutes, yet we are all still lying in bed here at the Children’s Inn.  Daddy and Hannah are cuddling in the bed, Hannah laughing at him tickle her with her pacifier.  So cute. 

Yesterday’s travel here to DC was very easy, surprisingly.  Hannah fell asleep about 15 minutes after the flight took off and woke up about 10 minutes before the flight landed.  My uncle was waiting for us at baggage claim, and we had a very scenic ride from the airport to the Children’s Inn.  We saw the Washington Monument in the near distance as well as other historic sites.  That was pretty cool!

One thing we weren’t expecting was having to have my uncle’s car and all of our bags fully searched by security to get into the NIH compound on which the Children’s Inn is located.  I guess I shouldn’t be surprised though since the Children’s Inn had to do a background check on us before we could be approved to stay here. 

As soon as we got here, we met Cristina and Bertrand, talk about timing. We both arrived at the Inn at the same time!   After emailing back and forth for so many months and seeing so many pictures and videos of Bertrand, I felt like I was meeting an old friend!  He is just as cute in person as he is in his pics.  

The people who work here at the Inn are incredibly friendly and helpful.   Daddy, Hannah, Cristina, Bertrand, and I were given a tour of the facility, and it really is a very welcoming setting. 

I was able to chat with my mom to hear how Ethan and Abigail were doing.  They are having such a great time in Cali!  Swimming, beach, museum, and they are even going to go to Disneyland!   I have to admit that I am missing them terribly, moreso than I thought I would this soon. 

Anyway, we ended up getting a pizza for dinner, and then I fell asleep soon after.  I didn’t realize how tired I was. 

I’ll be updating twitter/facebook during the day with statuses for my friends and family and hope to blog the day tonight (if I don’t fall asleep early again!)

It is time to go – here is how to get updates!

Wow!  I can’t believe this day is finally here…

We are just a couple of hours away from heading to the airport to go to the NIH (National Institute of Health) and meet with Dr. Sidransky and her team.  As I mentioned yesterday, I really am nervous about the brain MRI and BAER test…the thought of sedation just freaks me out.  I keep telling myself that these are the best of the best doctors in the country.  They have dealt with this disease before, probably more than anyone.  They know what they are doing.

My “plan” is to twitter/facebook updates during the day, mostly for friends and family to keep up on what we are in the process of doing and how Hannah is handling everything.  I HOPE to be able to blog updates at night with more detail, but that really all depends on how tired we are, how the internet access works, and how Hannah is doing.  So, if you want updates, go to my twitter page at http://www.twitter.com/overloadedmama or if we are already “friends” on facebook, you can continue to check my profile.

Please, please let this be a positive experience…

One day until we leave for the NIH

The house is eerily quiet this morning.  My mom flew in from California on Friday afternoon and flew back with Ethan and Abigail yesterday.  I’m not used to so much quiet in this house! 

I will admit, I am getting very anxious about this trip to the NIH to meet with Dr. Sidransky and her team.  Our flight leaves in about 24 hours or so.

There are 14 different scheduled procedures for Hannah for the 4 days we will be there.  There are only two that really, really worry me — the brain MRI and the BAER study.  Both of these require Hannah to be sedated.  I know they know what they are doing, but with her vocal cord paralysis and breathing issues, this just makes it more dangerous. 

Argh….

Hannah’s 2-month physical therapy evaluation

Pam, Hannah’s physical therapist, put together a PT evaluation for Dr. Sidransky and her team at the NIH.  

Hannah Ostrea was seen for the initial Physical Therapy evaluation on May 06, 2009 here at the Texas Children’s Hospital HealthCenter Initially, Hannah was able to roll supine –> prone with SBA (stand by assist).  She was able to roll prone –> supine with min. assistance x 1. She was dependent on her caregiver to move in and out of the sitting position.  She was dependent on her caregiver to move in and out of the stance position.  She demonstrated Poor static sitting balance with a wide base of support.   She was reluctant to weight bear through the upper extremities while in the sitting position.  She required maximum support in the stance position.

     Hannah has made significant progress since starting PT.  Presently, she demonstrates Good dynamic sitting balance.  She demonstrates lateral balance reactions when in the sitting position.  She tolerates the quadruped position with min. assistance x 1. She is able to move sit to stand with CGA (contact guard assist) after correction of her foot placement.  Hannah wears Surestep SMO’s due to bilateral pronation of the forefoot.  She is now able to stand using upper extremity support without resting her upper body on a nearby stationary object.   She will take steps with HHA of 2. 

The most recent short-term goals for Hannah is for her to crawl reciprocally, pull to stand and walk with a weighted push toy.

Be at Peace, Cooper Wilson

I’ve been following Cooper and his family for months now.  Cooper was diagnosed with GM1, another lysosomal storage disease.  He had just turned two a few days earlier.   

“Cooper peacefully earned his wings this afternoon as the three of us sat on the swing outside. We were talking and rocking, and he just decided it was time. We are so thankful that he chose the time and place. It couldn’t have happened that way if we’d planned it… just as it should be.”I have read this dozens of times now, and I just keep thinking to myself…I can’t even allow myself to type the words.  But the peace and tranquility of his passing is something that…if it has to happen… you know…

Here is what it is…

I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me.  After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is.

Denial is a beautiful thing.  I remember at the Texas Parent 2 Parent conference’s grief session, the woman running the session commented how being able to be in denial at times just makes everything else survivable. 

Right now, Hannah is a medical-equipment-free special needs child.   With the exception of her braces, which honestly I consider such a benign piece of equipment, no one looking at her would know that she is affected by this horrible fatal disease.    She just looks like any other beautiful baby girl you would see on the street.   No one really sees a special needs child.

Even more so, *I* get to feel like she is any other beautiful baby girl on the street.  The way she acts, smiles, rolls over to find me, etc., she is just like any other child.   I get to live in denial for many hours a day that anything is wrong with her or very minor things that are wrong.   For those many hours, I don’t feel like I have a child who may only be with me a few more months to a few years.

However, having to put in a tracheostomy will kill my freedom of being able to be in denial about what is happening to her.  It will be a constant visual reminder every moment of every day that she is losing this battle with Gaucher’s disease, that this disease is affecting her more and more.  

As long as she is without the trach, I feel that there is still the possibility that something may come up to save her life, that I will find something or  someone to help her, something to stop or even reverse the damange this disease has caused.  

It is almost as if this trach is the “fine line” between hope and loss.   It is also as if this trach is the “reality check” that we have to face with sharing with Abigail and Ethan about how serious Hannah’s condition is because they don’t know of any other child with a trach. 

I know that I will get used to the physical act of taking care of her with the trach, I know that.  I know that the trach will improve her quality of life since she is still learning new skills and still is an active and coherent child.   

I need to be able to continue to have my many hours a day of denial right now.  I’m not stupid, I know what the future will hold, which is why I need as much “denial time” now to really allow the freedom of having a somewhat normal family for Ethan and Abby and even ourselves.  

Because once we are no longer able to live in denial about this, I am afraid of falling apart and losing it.    I mean, seriously losing it.  I just can’t afford to do that.

So, that is what it is.   I so don’t want to be faced with having to do this.   I’m so scared about the emotional fallout from myself, my husband, my kids, and our families and friends once we have to cross that line.

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