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!!

Where has the year gone!!

Wow! I can not believe that it is already November!! Thanksgiving is just around the corner and so is Tyler's first birthday and then Christmas after that . . .

I am sorry that I have not been updating the blog much, I feel like life has been a lot of routine things with out a lot of new (so I don't think about updating). I will try to do better here after! :)

Torah standing up!!

Torah has recovered so well from her hip surgery and so many things have changed with her since then. She is starting to get a since of balance and today I noticed for the first time that she was sitting up on her own with only my hand on her back. YAY!!!! She still has a hard time keeping her head up for a long amount of time and I am not sure if that will ever change unless her low muscle tone improves. She also tries to pull herself up off the floor like she wants to sit up, but just does not have the strength to go all the way . . . but she sure tries! She is still not eating anything by mouth or really letting me brush her teeth, but we are going to Denver here in a few weeks to meet with the Oral Feeding clinic and also the dental clinic to see what and if anything can be done to help her.

I still think that she has small seizures almost on a daily basis but they never amount to anything except a build up of saliva. I was watching her while she slept a few nights ago and she just kept swallowing over and over again. She has not had what we call a "reflux" spell (which is probably a seizure) for awhile where she sleeps for 3-4 days . . . which is good news!

We are looking forward to our trip back to Kansas in December at which time we will be also celebrating Ty's 1st birthday (I cant believe my last baby is growing up so fast!!)

Tyler, Torah and Jace on Halloween

Follow up after surgery

Torah has been doing great since we had her surgery. She recovered very well and since she did not have to wear a cast (only a brace for 3 weeks), she has pretty much recovered fully except it will take another 2-4 months for her bones to grow back together. We were told at the follow up appointment, sometime next year we will go back down for an overnight visit so that the doctor can go back in and take the plate and screws out.

Torah's therapist was very happy with the range of motion that she has now and we have begun to do pool therapy once a week in addition to some other PT to help her get some strength back in her legs. I am really hoping that this will help her one day be able to stand up on her own or at least with some support.




We also were able to get her new wheelchair and although it is big for her right now - it is very nice and will hopefully fit her for the next 5+ years.

Hip Surgery . . .

We have made it to day 4 after Torah's hip surgery on the 30th. Today is going to be the most challenging day since she spent the weekend hooked up to pain meds with an epidural and they shut that off this morning at 6. When I left her room she was exhausted from crying and trying to take a nap in spite of the pain. We have the option of going home today if she can tolerate the pain with only the meds given through her g-tube . . . but I'm not sure how she is going to do yet.

Going back to the surgery . . . We checked in around 9 and her surgery was going to be at 11:30, but Dr. C was running behind and Torah did not actually go back for surgery until 1:40. Once they got her into the operating room, the Anesthesiologist had a hard time starting an IV and ended up just putting in a central line in her neck. I think he had a hard time with her epidural too because he had to redo it after Dr. C was done with her hips. The surgery it self went very well! They were concerned a little bit with how much blood she was loosing, but did not give her a blood transfusion during the surgery. I think I was allowed back into the recovery room around 6:30 and we did not get her up to the floor until almost 8pm.

Day two started off ruff. She was so pale and really not responsive to much. After taking a blood sample they found her levels very low and ended up giving her 2 pints of blood that morning which helped her so much. She woke up and started being herself and she started to pee so much that her catheter could not keep up with her output and she filled the diaper and her sheets.
Day three was really not too eventful and not much different - so we were able to get some rest and prepare for today . . .

Thanks so much for all the prayers for her and me. It is never easy and I wish she did not have to go through all of this - but I am really hoping that it helps her so much down the road.