We are wishing everyone a very HAPPY NEW YEAR
and we pray that 2011 will be a wonderful and memorable year!!
Love, The Hulls!!

Update

Really, not too much to really update. The doctors decided not to do an MRI (because they were booked and also it was not an emergency), but later they did decide to do a CT to make sure that there were no bleeds anywere in her brain and also that nothing else was going on that might have caused the seizure. It took awhile to find out, but of course it came back normal and everything looked fine. We also got moved up to a medical floor for them to watch Torah over night and make sure that she would tolerate her feeds ok and also tolerate her new medication. She has been awake for awhile and is being pretty onery - so, I would say that she is back to her normal self. Still trying to convince them to get things ready to go and let us out of her early tomrrow morning . . . but we will see how it goes and what the doctors have to say either tonight or in the morning. Thanks again for all the prayers!!

Seizure #5

Well, we almost made it though 2010 with out anymore big events! Torah had other plans though . . .

Yesterday around 12:30 she started out with a small seizure that I was hoping was going away after a few minutes (like she had around Thanksgiving), but at about 12:45 her left hand started to twitch and I knew then that this one was probably a little bigger then we thought! I got her to the ER around 1:00. She was a little more alert to her surroundings and almost giggled at me a few times. It was like she was trying to fight off the seizure and just show me that she was ok! The ER doctor gave her 6 different doses of anti-seizure meds which helped calm her down and eventually stop the seizures. Around 6:30 the Flight for Life team arrived to pick her up and fly her to Denver Children's Hospital which is where we are right now. When I arrived and got up to the PICU, I noticed that her eyes were still twitching and also dialated differently (telling me that she was still having a seizure), so the doctors told the neruologist and they hooked Torah up on an EEG to monitor her over the night and through out today. It looks like her seizures have stopped for now even though they are picking up some activity on the EEG. The neruologist also is putting her on a new seizure medication to help control them better. So we will be here for sure for yet anther day (I am really hoping to get out tomorrow morning).

Thanks for all the prayers and thoughts!! She is my strong little girl and just loves to keep these doctors on their toes.

Home from Denver . . . Happy 1st Birthday Ty!!

Well, we made it home from our trip to Denver late last night. The doctor appointments went very well . . . most were just routine check-ups. We started out with Dr. Pickler in the Oral feeding clinic along with an OT, PT and Nutritionist. Conclusion for now is that Torah will probably not ever sustain her self by oral feeding alone, so we are not going to push anything. They want us to get Torah to where she enjoys having her teeth brushed (that will be an amazing day!!).
Our next appt was with Dr. E in the Special Care Clinic. Everyone was concerned that she had lost a few pounds since her last visit, but I told them that after Torah's surgery she lost quiet a bit and is slowly gaining it back . . . at least they agreed that she looked good and healthy! I asked Dr. E about the DNA testing that we did on Torah last March and she told me that once again it came back normal (so kind of back to square one). The doctor did put Torah on a Vitamin D supplement, for now we are just giving Torah one dose, but if blood results come back and show that she is really low on Vit D - then we will have to probably give her two or maybe even three doses daily.
Dr. Scott was next at the Dentist office. First visit and we really like her (hoping that we can keep her!). She doesnt want to sedate Torah just to clean all the tarter off of her teeth, so we are going to wait till something else comes up (like an MRI) to join up. She does have all 20 teeth and just by looking - no cavities (Dr said that since she does not eat by mouth - she will have no chance of getting cavities). That is the end of Day 1 . . . but the weather was so nice that we went shopping that night for a few Christmas gifts and more or less to just get out and enjoy the air!

Day Two had two more doctor appointments plus some lab work. We started off with the Neurologist. We did not get to see our normal doctor, but a gal that works under her. I am almost waiting for a phone call that they are going to up her seizure med or maybe put her on a new med in addition to what she is already taking . . . only because she had those small seizures around Thanksgiving and even though she lost weight and her current dosage should be enough, I just dont want any emergency trips to Denver in the next few months. So, we wait to see what happens I guess.
After lab work and lunch, we headed up to see our Orthopedic doctor who did the surgery on Torah last August. Everything looks great and her bones are all healed up! (see below)

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I also had them take more x-rays of her spine
to check how her Scoliosis is doing . .

Front view with out back brace (35 degree curve)



Front view with back brace (39 degree curve)



Side view without back brace



Side view with back brace

The back brace dose not seem to be really helping her Scoliosis (although it is helping her sit up straighter). So on our why back home from Kansas, we will be stopping by TCH to meet with a guy to take a casting of Torah to fit her for a new more rigid back brace.

Well, I guess that does it for now . . . although a year ago today I was delivering my baby boy Tyler . . . HAPPY BIRTHDAY TY!!!!

Thanksgiving

Hope you all had a wonderful Thanksgiving this year! We did!!! Even though we were not able to share it with all our friends a family in Kansas, we were able to share the day with our new friends here in Wyoming.

Torah has been doing a lot better. No new seizures that I have seen since the last update. Getting ready for all her appointments here this week down in Denver at The Childrens Hospital. Will see how our new appointments go with the Oral Feeding Clinic and also the Dentist (for the first time). I had tried to schedule Torah for a dentist in Cheyenne, but every time we were scheduled to go (which was a two day visit) we always had to go down to TCH for appointments. So, I figured that maybe we should just schedule her with the dentist at TCH and that way we can fit it all in while we are there.

My friend April that lives about an hour North will be keeping Tyler since Bob is working nights and I know from experiance that taking all three kids to two days worth of doctor appointments is never a good thing . . . So, THANK YOU APRIL!!!! It means the world!!

Also getting ready for a trip back to Kansas at which time we will be celebrating Tyler's 1st birthday (which is this Friday already!!). Looking forward to seeing all our family and friends! Hope everyone had a wonderful December and will post again when I can get back to the computer!

Hopefully nothing!

I just posted on FB that Torah has been having a lot of small seizures lately (staring Friday). Saturday she went into one of her spells where she sleeps all day for 3-4 days and I thought that she was going to come out of it today, but even last night I watched her in her bed zone out and it took me making a lot of commotion to get her to snap out of it. Also, today during her class time, one of her therapist told me that she zone out (what we call a staring spell) and it took awhile to get her to come back from that as well.
Just pray that we can make it a few more weeks. Her appointments with her doctors in Denver are on the 1st and 2nd of December and even though all the doctors really can do is increase her meds, maybe they can still see her and how she is when she has these mysterious seizures. Really also wanting to make it through the holidays!
We use to only go to TCH every 6 months, but we starting to notice that Torah would have a big seizure anywhere from a month to a few weeks before we went down. So, Bob and I asked the doctors if we should maybe be coming every 4 months - and they agreed. We were at TCH in August for a surgery follow-up and other appts (including neuro), but I am starting to wonder if we will make it to our next 4 mth appt here in just a weeks time. I guess we will soon find out!
Will try to keep this updated on how she is doing!
Thanks for all the prayers and support!

This is Torah's first official piece of art!!
It was suppose to be a thanksgiving turkey, but I am calling it her butterfly!
They took her shoe print and put it over a coffee filter
and her therapist Jess helped her paint with a brush and droplet.
She had so much fun and got paint everywhere!!