Spring has arrived . . . I think!!

We have made it to May and (knock on wood) Torah has yet to have any major problems this year! Her Aunt Chrissy just came up for a short visit this past weekend and we had so much fun. We even got to do some shopping and made a visit to the "Build-a-Bear"workshop. The rabbit in the picture above is the newest addition to our "lil family" and her name is Peanut! Peanut also came with a new puppy brother named Tank and he was for Tyler.

The weather is starting to warm up here in big ol' Wyoming . . . but I have a feeling that there still might be a snow or two in the future as well (so no planting flowers yet). Torah's older brother Jace graduates pre-school this Thursday and he is ready to start Kindergarten the next week but will sadly have to wait till August to see all his friends again.

Not too much new going on. We are still trying to figure out what Torah will be doing for "School" next year. Will update more when I know what they have decided. Looking forward to seeing family at the end of the month!!

Happy Mothers Day to everyone

and especially to all you MOM"s that have

special little ones who would be lost without you!!

April update

This last month has pretty much flown by. We did make it to Denver for Torah's appointments at TCH. The Friday before she developed a really bad cough pretty quick, so I took her into the walk-in clinic to try and avoid the ER over the weekend. It was pretty close to 5 and I think the nurse and doctor both were ready to go home so they just prescribed Torah a z-pack and sent us home with orders to bring her back to the ER if she got worse that night or the next day . . . I was not impressed at all and will not be going back anytime soon. When we arrived at Torah's first appt on Wednesday afternoon - Torah was still pretty out of it. When her doctor saw her coughing and looking really sick she pretty much sent us over for a Chest X-Ray and blood work to see what was going on. Even though Torah's test all came back normal, I was just glad that a doctor cared enough to see if there was something else going on.

I gave the doctors some new information I had come across and was told that they would look into it some more. The dr also wants to do some more specified DNA testing next time we come down to look for an answer on what happened

with her brain. We also saw Torah's Rehab and Ortho doctors. Found out that the curve in her spine is up to 40 degrees, but since Torah is still so young the doctors do not want to do anything invasive yet. They also pretty much told me that there is not much that can be done right now either to help correct it. We are going to try and get her into some Hippo Therapy (horseback riding) to see if that could help strengthen her trunk area, and one of Torah's therapist wants to try e-stim on her back (but getting a doctor to write an order for it is another hurdle right now). We did not get to see Torah's normal Neurologist that we have had from the get-go and who knows Torah so well, but this new student doctor is picking up on things and I am hoping will be a good thing in the end. They increased some of her meds to make sure that we did not end up back in Denver a week later like last time.

We have also found another Respite provider to help

us with Torah. Her and her daughter actually came over last night and watch Torah and Tyler while I took Jace to his AWANA Awards Night. They have a boy that is autistic and so maybe they will not be so "afraid" of Torah.

Still not sure what will happen next school year for Torah. Will be setting up an IEP meeting with everyone so that Bob and I both can go and talk about what we would like to happen (or at least find out what we need to expect for next year). Might also be looking into going up to Casper to work with a lady that could give us new ideas on different therapy treatments (kind of an "out-side the box" approach).

Still have not heard anything from our insurance comp

any or Bob's employer on weather they will be adding Torah's Aquatic therapy to our plan . . . so for now we just wait.

I am getting more and more excited about purchasing an iPad for Torah to use. I have 80% of the money saved up. Torah's case manager just went to a training class on all the applications that iPad can access for disabled people. Right now we are just working on flash card with a "YES" and a "STOP" , but I am wanting to do even more with maybe some music applications and also where she can draw with her own hand (or even foot) - maybe she will be able to see that she can make things happen.

Hope every one has a Blessed Easter!!

It has been awhile . . .

I know I have not posted anything for awhile. I feel like my mind is going in so many different directions and it is very possible that it just left for a very long needed vacation. LOL

Torah is really doing well over all. We are planning a trip down to Denver here in a few weeks for her appointments. She has not had anything big happen since her last seizure in December, but she always seems to be a ticking time bomb (so I will knock on wood!). We go back to her ENT on the 31st to see what her ears are doing.

A lot of our time and concentration has been going toward her schooling and what she will or will not be doing next year. The question has come up weather Torah should go to "Pre-school" at the development center next year. Currently she is only going to school for 1 hour twice a week. I wished that she was there for the full time, but since she does not eat or brush her teeth - the group either dose not think that she needs to be there (or they do not have the staff or time to work with her). I only want her there because after her last trip to Denver we were told to start working with smells and also oral care . . . so would not a great time to work on that stuff be when the other kids are eating and brushing their teeth????

Now for this next coming school year - it would be for the morning hours 4 days a week. I would really like this to be a transition time for Torah to get ready for Kindergarten over at the Primary School in 2012. I have been told that since Torah does not participate like the other kids in her class and because she might miss some school, they would like to keep the slot open for a child that could use it more. Funny thing is - I was told once that Torah deserves schooling too and Legally the state has to provide for her what she needs. I just do not understand what the problem is. If a meeting is not arranged soon to meet with all of Torah's therapist (who have been AWESOME through all of this), and other caregivers - I will defiantly get one scheduled so that we can know for sure what this coming school year will be like. I just never thought I would have to worry about the Development Center and the care that Torah was getting there.

Sorry for letting it all out, and I am hoping to have a better post when we get all of this resolved.

ENT visit

I took Torah in to see her ENT doctor yesterday. The doctor was pleased with how things were looking. Both tubes were out. Torah's right ear was clear of any fluid, but her left ear had some fluid in it, so we will be going back in March to get them looked at again (unless she gets sick around that time frame). The doctor just thinks it could be due to the "cold season" and wants to wait to make sure before they try something different.

She has been doing really well otherwise, very happy and loves to play with her brothers!! Just tonight all 3 kids were down on the floor playing . . . Jace had Ty and Torah laughing and I just loved every minute of it!!

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.