Kaye stander....

This is Faith, in her loaner KAYE stander...

It's a simple design but out of all the standers we have tried, it has been the most effective.

It has a base with two slide bars for each foot to be positioned it...

Padded area in front where her stomach, knees and chest go....

A raised back pad to support her if she leans back...

A BIG tray....

And a hinged arm that locks behind her waist, when she is in it.

The best thing about this stander is that it does not have a lot of things to hold her in, it basically relies on gravity to keep her legs down and an arm holding her in from behind.

We have tried about 4 different kinds, one of those being a smaller version of this stander, when she was much smaller. It was always our favorite so we were excited to get our hands on this larger version, last week. She has actually been asking to go in it, too, which is great!

Things I wasn't expecting....

Periventricular Leukomalacia of the parietal and occipital lobes

Thinning of the posterial body of the corpus callosum

Increased T2 hyperintensity within the periventricular white matter.........

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Words I had not expected to read when I picked up Faith's medical records. Have you ever had that feeling.....like you try so hard to learn about your child's condition and then another thing that you didn't know about pops up?

Well, that's me, today. I got out to the car and started reading, as I always do, and I see these NEW names of things that I didn't know about.

This is what I mean about having access to our medical records. How do you know what to ask if you can't see what they see or they don't explain what things mean. If I hadn't requested specific records (ie: MRI findings besides just her MRI results) I would have never known those things.

We knew that Faith had severe white matter volume loss, we knew that her ventricles were enlarged because of the loss of white matter, we knew that the sagittal sinus area was abnormal due to the blood clot. But no one ever gave us names for those things or other things that had happened.

Some of these new names I don't know anything about and despite significant googling I still have limited information. The big one is the thinning of the corpus callosum. If anyone out there is familiar with this condition let me know, OK!

I sat in the car and had a good cry, as I read. Reading medical records of your child with severe brain damage is REALLY painful. Even when you know A LOT about it!

If you have never requested entire medical records from say.... your neurologist..... YOU SHOULD. It gives you a different perspective and often info that you would have otherwise never known! My favorite reads were the doctor's office notes.....many comments about my intense questioning to multiple doctors. Like that's a bad thing! Another favorite was from the oncology office. (I have had a lot of problems with them, as stated in my previous post) In their office notes it was recorded that "mother was highly upset about the time waiting to see the doctor, time it took to get coordination for treatment at Duke and having to see different doctors every visit." YES... I was upset that I had to wait over 4 hours to see the frickin' doctor! YES....I was upset that after dozens of phone calls to the office, your coordinator did not mail the required paperwork to Medicaid after telling me she did! YES.... I do get upset when I have to explain to the tenth doctor about all of Faith's conditions because they don't read her chart before seeing her and none of the previous doctors bothered to explain it to them! CAN YOU IMAGINE?

Thank you HIPAA for being a pain in the butt....

Tasks for the day.....

1. Call oncologist office to ask for copies of Faith's medical records to take to Chucktown..

2. Go to Greenville to pick up said medical records as well as records from neurologist's office...

3. Have hissy"FIT" in oncologist office after they refuse to give me all of her records, specifically ones pertaining to correspondences with Duke. They sited HIPAA laws prohibiting them from giving us any records in Faith's files that originated at another office/clinic. Then have UBER HISSY FIT after they charged me $30 for 22 black and white copies of "some" of her records! I "could" have avoided this "fee" if I had requested them to fax the records EXCEPT every time I have asked this office to do so in the past they NEVER get it done and we are operating on a very short time frame here....

$30 bucks worth of records on left.....FREE records on right!

4. Get to neurologist's office and receive over 100 pages of records (including records and correspondences from oncology office/Duke/peds surgery and neurosurgery!) for FREE! Mind you, these offices are in the same hospital system!

5. Go thru drive thru for a quick burger and head home....only to find out they put mustard on my burger! I HATE mustard!

Our life line...

This is Faith's medical notebook. In here, is her life.... schedules, medical records, phone numbers and addresses, appointments, documentations, lab results, shot records, diagnosis lists, research on her conditions, research on doctors she sees/has seen, evaluations, therapy notes and IFSP's. After she was born, I began to realize that a simple calender in my purse was NOT enough! So I began working on a notebook that I could carry with us, everywhere. Over the years it has evolved and a few years ago I found a binder with a carry strap that fits over my shoulder. This is our lifeline! We go everywhere with this notebook. I usually change out everything once a year and update everything as well as keeping any important older info. I used to buy those expensive calenders to go in it for like ten bucks. But this Christmas I found a great cheap alternative at Big Lots for a dollar fifty. A spiral bound notebook with 26 blank monthly calenders so I can fill them in as I need them. I keep a pencil pocket for business cards, in the front and an accordion file for things that don't fit in the tabs. It always surprises doctors when they say they didn't receive a document from another office and I whip it out of the notebook. It's really a running joke in most offices. Office staff know it well and at our peds office they all brag about it to other parents. When Faith had a seizure at the office, last week, I left it at the front desk, while they called trying to get an appointment for us. The girl at the desk knew just where to go and filled in the appointment for me! This is probably the single most important piece of equipment that we use in our lives. When I change everything over, I just file away or box up the old records. If you don't have something like this, I highly recommend making one! They are INVALUABLE!

Stories...

Today, at therapy, I was approached by the head therapist. She asked me if I would be willing to write Faith's story with a focus on our experience with our therapy group. It seems that the head of the hospital is going to be speaking at a conference and wanted to have a few stories to share with them about families experiences with PTW. I was touched and honored. In the last few years we have often been asked to be subjects in photo shoots for the annual Camellia Ball (fundraiser for PTW) and also representatives at the ball. I enjoy doing this sort of thing because it gives me a chance to talk about Faith and our experiences. I am not normally a speaker or writer but when you are living with a force like Faith, you are infused with a passion that overcomes fear. I am excited about the opportunity and hoping that it will get some recognition focused on our therapists and their office. I leave you with photos from P.T., today, with Faith standing and reaching (A big deal!) I love how excited her therapist is!

Admitting IT...

All mothers worry about their children. They worry that they aren't eating enough, they worry that their children aren't growing tall enough or that they aren't fitting in at school. They worry that they aren't learning the right things fast enough or that they aren't potty trained when all the other kids are.

Since Faith was born all the normal things went out the window. I worried about growth but because she REALLY wasn't eating without being forced. I worried that she wasn't sitting up at one and a half and I worried that she wasn't using her hands like she should. We knew all those things were part of her diagnosis but the fear of the unknown is a hard thing to face especially with a special needs child. Most of these fears have subsided or been proven wrong or maybe been proven right but we learned to live with them.

I do have a secret fear that I don't normally share with.....well...anyone. It is something that I have not been able to overcome and it seems that the fear has gotten worse in the last 2 years. I hate to even put it in words......But I am admitting it, here, among friends who probably have dealt with similar fears so I know I am in good company.

I am terrified that we will find her in bed, not breathing... You know what I mean.

I know this is a painful subject for many of you as well as me....some have dealt with it in real life. As my best friend's mother did in July of 2007, she found her daughter, in her bed at home with her two babies still in their cribs, one morning that her husband was out of town. We all miss her terribly.....it has been so hard without her.

But this fear is a gripping fear, for me. When Faith was first born, her seizures presented as apneic episodes. Meaning she quit breathing and could not start again without CPR. As her seizures have increased in the last year, the fear has come creeping back into my head/heart. The seizures are different kinds with different presentations, some with blue spells that nearly gave me a heart attack~ Carl and I rarely go a few hours at night with out creeping in her room to check on her, even though we have a video monitor. I have noticed in the last two months or so that it has been hard for me to go in to her room. I have found myself asking Carl to go check on her, while I wait breathless....for him to say she is OK. If he hesitates or is too long coming out of her room, my heart starts racing.

I know a lot of people would say I was being irrational or overprotective or paranoid. And that may be the case...who knows. But it is a very real thing to me. She usually wakes around 4 or 5 and we put her in bed with us. Often I wake with her next to me certain that she is not breathing. I don't know how to get over this fear.....I know that GOD tells us not to fear but fear can be something that keeps you aware. And if you live with the reality of a special needs child it CAN be a reality you have to deal with. A reality that I have yet to successfully deal with.......

Is there anyone else out there dealing with this? How do you handle it?