Rough and busy month

This year just seems to be flying by and I can not believe that it is already July. Torah has been very ornery lately and has kept us busy cleaning up after her. If she is not pulling out her mic-key button, she is opening the medication port and letting everything drain around her in the middle of the night. I am guessing that she is doing this because she might have a stomach ulcer and some pains to go along with it. Two days ago, she started to go into one of her sleeping spells, so I just kept her feeds low and also kept her on oxygen . . . now today, she seems better!!

I am trying to wait for our trip to Denver in September to arrange all of her dr appts at TCH, but that is also pushing the 4 months and their could be a possibility of a seizure before then, but I am going to do my best to try and catch the seizure and maybe use the "seizure action plan" the doctors gave me last time to see if it will hopefully work!

Bob's brother gets married this month, and we are so looking forward to welcoming Heather into our family.

After the wedding, my dad and sister will be coming up to see us for the week. So excited, and we have lots of fun things to do while they are here. It also sounds like, Bob's parents might be coming up the week after too . . . so we will be busy and it will be so good to see everyone.

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!!