Facebook Status update

I realized that I was posting everything to Facebook and nothing on here. So, just for my benefit I am going to make one big post with all my FB status updates ...

Day 3 - Friday, February 21

Update for Friday morning: Torah is stable. Ventilator is down to 15% oxygen. Still doing treatments every 6hrs to help break up all the mucus and junk in her lungs. Currently on two IV meds and one med that she gets every 8hrs to keep her blood pressure from dropping. She is more active today, but they have plans to take her to IR to have the GJ tube put in to start her feeds and then there will also be the Lumbar puncture at sometime today as well to check her CSF and make sure the staff infection did not get into her brain after CPR was given on Wednesday (during both of these procedures, she will get some meds to sedate her). Still in the PICU rm 3103. Thanks again (can not say it enough) for all the prayers for her!!! 

Friday evening: PICU waiting room ... Home away from Torah's room. Just waiting while they do the lumbar puncture.

Dr came by today and said that it looks like everything traces back to Strep A. So it was not really ever a staff infection. She said that Torah probably is a carrier for Strep A and when her immune system was weekend the Strep A took over and it is a very aggressive bacteria. Dr also said that recent cultures look clear and the antibiotics have been doing their job. The LP is just to make sure that the bacteria did not get into Torah's spinal fluid (which can happen after CPR on a child is given).

Day 4 - Saturday, February 22

I had a dream that I woke up and her vent tube was out ... but no such luck this morning. She was very alert this morning though and I think she even tried to smile when the Housekeeping gal came in to put clean trash bags in (if you know Torah, you know that shaking a trash bag will make her giggle). All that did was cause her secretions to bubble up and she had to be suction'd out. 

Lumbar Puncture went well last night and so far the doctor said it looks good, but they need a full 24-36 hours to make sure. 

Still on blood pressure meds, but they are slowly decreasing them. Swelling looks like it has gone down too (at least in her face). 

If things go "as planned" ... she might (I said might!!) get of the vent tonight or tomorrow morning. Prayers are working, so keep them coming!!

Day 5 - Sunday, February 23

Not much has change in the last 24 hours (not worse, but not better either). They have done several trials to see if Torah is ready to be taken off the vent, but seems she is just not ready yet. So the tubes get to stay in to help her breathe. 

When she is awake, she seems to be alert. Most of the day she sleeps (which is good so that she is not fighting the vent too much). Still on blood pressure meds, along with antibiotics and a few other meds. Still swollen, but her face dose look better. Sounds like they might be weighing her soon to see how much fluid weight she has put on. Her feeds seem to be going good with the GJ tube and found out that she had a large explosive poop last night too (glad I missed that one). 

Everything is starting to run together for me, so if something doesn't make since or you have a question, let me know. Thank you again for all the prayers!!

Day 6 - Monday, February 24

So, cross your fingers and toes ... Doing one more trial to see if Torah is ready to have the vent tubes pulled. She was all smiles this morning!! 

She is off blood pressure meds and has found her feet. Just hope that we can get out of the PICU before the day is over!! Prayers are working!!!

Update 2: 

Torah is officially off the ventilator and tubes are out (minus a front tooth too!). She is now on BiPAP (hating the mask). Has had one of her IV's taken out (still has two left). I have seen more loose stools come out of this lil girl than I thought possible (currently off her feeds also, so who knows where it all is coming from).  

She has found her legs and feet and they have been going everywhere. Sadly she can not have her hands yet, so she is making up for that with her legs and feet!! 

Probably all the excitement we can take today! 

Want to thank her class at school for all the cards that will be waiting for her when we get home (she misses everyone and I am sure she is ready to get out of here soon!) and for the e-mail'd notes that have been delivered her to her room! 

Thanks to some friends for exposing me to Panera Bread on Saturday, which is right across the street! I am thinking it might be supper tonight since it is 60 degrees outside.

Day 9 - Thursday, February 27

Sounds like Bob is coming this way to get me and bring me home so I can get my van!! 

Torah had a good night, but maybe not so restful. The plan for today is to get her off the bipap machine so she can get out of the PICU and to a med floor (which is one step closer to coming home... will see how she dose when they take her mask off.

Day 13 - Monday, March 3

Small progress made. Switched her BiPAP mask to just a nose mask. Heart rate and respiratory rate have come down a little. She did have some muscle spasms this afternoon, but those subsided after her seizure meds were given. 

Talked to her surgeon today about her hiatal hernia. He is all for fixing the hernia if it is causing distress on her lung or any other problems, but will see what all the doctors say tomorrow. Hoping for a uneventful night (even with all the suctioning they will have to do). 

Oh, and she is officially missing her top two front teeth now thanks to all the suctioning and scrubbing of her teeth.

Day 14 - Tuesday, March 4

Struggled breathing with her left lung early this morning. Fever is back at 102, so she is back on the cooling pad. Surgery is scheduled for 1pm on Thursday to fix her Hiatal Hernia - hope this helps the lung recover faster. Her secretions are so thick that it is really hard to suction her and it sounds awful. 

I'm doing good, eating my food and taking care of myself. Sleep is hard no matter when or where, but I am sleeping. God is in control!!

Day 15 - Wednesday, March 5

Nothing new and no changes really from yesterday. Her vitals are still doing good. Respiratory is still shaking and suctioning every 4 hours. Surgery is still a go for tomorrow at 1 to fix her hernia (not sure yet if it is the cause of her left lung issues or not). She has been sleeping a lot the past few days but I caught her with her eyes open and even got a small smile (hard to see with the mask).

Day 16 - Thursday, March 6

Should be going down for surgery soon. Starts at 1:00, and will be 2+ hours long. She has had a great morning. Will update after we are back in her room. (surgery was postponed till 4:00 and lasted 5hrs)

Surgery is finally done! She did great and everything is fixed and back where it goes. Just waiting for her to get back up to her room. I've been kicked out till they get her settled 😡 but whatever. She will stay intibated till tomorrow so they can do the MRI in the morning. Will probably be here into the first of next week, but will have to see how she does once the tubes are out. Thanks again for all the prayers!

Day 17 - Friday, March 7

Surgery started late and lasted 5hrs instead of 3. So about 10 last night she was finally settled back into her room to recover. She was awake and moving her arms and feet, looked like she was handling things well. The hole in her diaphragm was about the size of an orange and was repaired with a patch. She is getting her MRI of her brain done now. The plan is to keep the tubes in for another 48+ hours to let her stomach heal before going back to the BiPAP. They will not start her back on g-tube feeds till Monday. Doctors say her lungs sound really good and her vitals look great. Still on an antibiotic to fight whatever is causing her fevers. 

At this rate I would like to say we might be home on Wednesday ... but will hopefully know more Monday when they re-evaluate. Thank you again for all the prayers!!!

Day 18 - Saturday, March 8 ... I think??

So yesterday was kind of crazy between getting her MRI done (which showed nothing new) and then having her pic line moved from her right arm to her left arm (this little girl has very small and complex veins). Both of those procedure/test were two separate trips to radiology. 

Today our awesome nurse Jamie and myself have been getting smiles ... even though they had to start another iv because the one in her foot went bad (about every 2-3 days they have to start a new iv - see comment above about veins). 

A pressure support trial was done to see how she would do without the tubes, but she failed. Sounds like they will do another one tonight. The hope was to take the tubes out Sunday, but she also needs to be ready. Putting her back on the BiPAP on high settings would not be good on her hernia repair.  No fever last night or today (knock on wood).

Day 19 - Sunday, March 9

Sorry this is so late, just realized I have not updated yet (days and hours are really starting to run together). 

Still on the vent but she has passed two out of two of her 2 hr pressure support trials ... So maybe the tubes can come out tomorrow ... Maybe! She has a ton of secretions in her left lung and her X-Ray did not look so great this morning, but she sounds good now. 

She is down to just her pic line for her meds and iv fluids/tpn. An iv that was started yesterday already went bad (each iv she has had only last 24 to 72 hours ... so she has been poked everywhere). Poked so much they pretty much have nowhere to start another iv. Her right arm/hand and left foot/leg are swollen due to previous iv's. 

Got out for a bit today and was surprised by the 70 degree weather, but no complaints!!

Day 22 - Wednesday, March 12

So far today she has passed both of her 2hr pressure support trials, one more scheduled for tonight and then hopefully the tubes will finally be out in the morning. She will probably go back on BiPAP for support, and they still are suctioning her out about every hour. 

We moved rooms to 3130 (which is only 4 doors down from where we were), thinking it is more of a 1:1 room with her nurse. Hopefully less commotion outside our door too! 

Torah and I both have our days and nights mixed up, but I'm working on fixing mine (trying anyway).

Day 23 - Thursday, March 13

Torah is on her 4hr trial right now to see if we can take the tubes out this morning. Pray!!! Her heart rate and respiratory rate go up and she just looks exhausted. Not sure the exact time, maybe noonish if she dose pass.

Been told it is Friday ... Day 24 - March 14

Made progress yesterday by getting the tubes taken out. This morning the nurse/doctor both said that she sounds like she is moving air well with the BiPAP ... but, her respiratory rate has jumped up to 40 & 50s again and she visually looks like she is working really hard to breathe. Still suctioning every hour with breathing treatments every 4hrs.  Re-intibating her is not out of the picture if she needs it, but for now they just want to watch her. Mama is tired and not sleeping great (not sure I ever did). Missing my boys ... yes, all 3!! Hoping for a HOT shower and maybe a nap.

Day 25 - Saturday, March 15

Tubes are going back in. 😢

She is working so hard to breathe. They did a blood gas to check her CO2 levels and for once they were high. She has so much secretions that it is starting to affect the right lung now too. Heart rate is high and she is breathing so fast that she is not syncing with her machine. 

Will try to update later on with how she is doing.

Day 26 - Sunday, March 16

Evidently Torah kept last nights nurse on her toes. Nurse said she woke up and was just pissed off (I'm thinking she was being her ornery self), so they gave her one of the PRN meds to calm her down. Blood pressure has been low for the last 36 hours and is not going back up yet, so they have been giving fluids to try and help along with some medications (so far nothing has worked). Also she has not been peeing, so they put a catheter back in. Spiked a fever last night too ... Back on antibiotics she goes. Sounds like the doctors have no clue (she always keeps them guessing). 

Day 27 - Monday, March 17

Torah was pretty active this morning, which would normally be a good thing if she didn't have a tube in her mouth to help her breathe and a catheter to help her pee. Still on dopamine to help keep her blood pressure up. They think she has some kind of infection or sepsis, but just not sure where or what kind. Just praying for answers and healing. 

On the plus side, I was able to spend the day with my boys at the zoo ... Thanks to two very amazing women!! Thanks again Katrina & Sara!!

Day 28 - Tuesday, March 18

Overall was a good day. She is off her Dopamine and antibiotics. They took the catheter out because of a lot of blood (hoping it is just due to irritation from the cath), should know by tomorrow. Her cortisone levels and thyroid are both low and she is receiving supplements for them.  She went through 3 iv's in 36 hours, so they put in a longer iv with the help of ultrasound (even that took a couple of try's). I did talk to her current PICU doctor about the port and she said it was not an unreasonable request and would look into it for Torah. Pulmonary wants to do trials over the next few days where they make Torah do most of the work breathing to hopefully strengthen her lungs. Not looking at taking her off the vent anytime soon, they do not want to have to reintibate again.

Been posting a lot on Facebook, but thought I should update here as well.
Her first day was a bit rough here at TCH, but day 2 went a little better. As of right now (day 3) we are watching her blood pressure and she currently is getting two iv meds and one other med every 8 hours to help keep her blood pressure high enough. Still very swollen due to all the fluids. Was a little more active this morning, but still really sleepy. The cooling blanket help'd bring her 107 temp down to 101-102. Getting pumped full of antibiotics to help fight the staff infection that was in her blood. A CT was done yesterday to check for any extra fluid or pressure in her brain before they do the lumbar puncture (hopefully doing today) which will check to make sure the infection did not get into her CSF (cerebral spinal fluid) which can happen after doing CPR.
Will also be going to IR to get her G-tube replaced with a GJ-tube so that they can start feeds (this will bypass the stomach and go straight into her intestine).
Still on the ventilator to help breathe, but has been reduced down to only 15% (maybe it will be taken out sometime today or tomorrow). Still in the PICU for now.
Side note: Mom, Dad and two brothers all had a positive Strep test but we also all had that wonderful shot in the butt to help and thankfully are all healthy again.
Thank you so much for all the support and prayers!!
Kelle

Update on Torah: She had a small fever yesterday and I had to suction a few times throughout the day. This mama went to bed around 1am and she was coughing a lot but seem'd to do ok. Woke up at 5am to find her breathing really labor'd. Check her pulse ox and it was in the 30's and 40's. Hook'd her up to some oxygen while I got dress and then took her to the ER. The ER ended up putting in an IO due to not being able to get an IV started. While they waited to see if bagging her would help her oxygen levels, they prepared to intubate her (which was done soon after arriving). While they were intubating her, her hear rate dropped to 20bpm and they began CPR (heart did not stop).
We are currently at TCH in Denver in the PICU. she is still intubated and pretty sedated. She had a fever of 107 - so they have cooling blankets under her to bring down her temp. EEG being done now too to see if there is any seizure activity going on.
Thank you for all the prayers and support, she is a strong lil girl that always keeps me on my toes. Will update as I know more.

So it has been quite awhile since my last post

 and there is no real good excuse besides me being a mom ... Sorry!!

First Day of Kindergarten

Torah has had a lot happen. She has started Kindergarten and loves it. Her teacher's name is Mrs. Soske and her para is Kayla. Everyone seems to know Torah now and loves to see her smile. Torah did have a seizure right before school started and we again was shipped to TCH in Denver. Her seizure meds have gone up in dosage and seem to really have no effect on her or her seizures, but we hoped they were under control. 

Our New Home! 

We have move to a new home and have settled in since June. We went from a 3 bedroom double wide trailer house to a 5+ bedroom home with over 2600 sq ft of room. Going to be working on remodeling the upstairs bathroom for Torah in the next year, but other than Bob building a ramp in the garage there was not much to change to the house. 

Feel free to come see us anytime, we always like to have our friends and family as guest!!

Torah was able to go to the Shriners Hospital in Salt Lake City. We saw an orthopedic doctor there. They also set her up with a new back brace, AFO's (leg braces) and also a new wheelchair. 

We made it home to Kansas for Christmas and survived all our family gatherings. It was so good to see everyone again and spend time with them! On the 26th of December, Torah's brain decided to spice up the holidays with a "status seizure" and we ended up calling 911 to come and get her from my dad's house. I was able to see some old friends and co-workers while we were in the ER, but she was soon shipped out to Wichita to Wesley Medical Center to the PICU and under the same neuro doctor that she saw when she was born. It was good in a way, because this doctor brought up some other ideas of ways to control Torah's seizures since the 3 medications did not seem to be doing the job. So after talking with Torah's neurologist here in Wyoming, we will be getting her set up with VNS Therapy. The procedure will be January 22nd. We are hoping that this will help control her seizures better - it is kind of like a pacemaker for the brain. Maybe after some time we will be able to stop or lower some of the doses of the medication she is on. 

Will try to update again later to let you know how she is doing with the device. If anything, send me a note and remind me!! LOL 

This goes out to all the

 "MIRACLES" 

http://www.globalgenesproject.org/

You can check out other "Hope - It's in my Genes" photos on their FB page

https://www.facebook.com/globalgenesproject?sk=wall

I can not believe that tomorrow, it will have been 5 years since God blessed me and and your father in such a way that changed our lives for the better. You have kept me on my toes and many restless nights, but I would not trade a single day. We love you so much!! Happy Birthday Peanut!!!

Thanking God for his protective hand

2011 was a very uneventful year for little miss Torah. We did not have any big seizures thankfully and also no other medical concerns where she had to be flown to Denver. Besides her hardware removal surgery, it was a very good year. She has been doing great in all of her therapies. Between PT with Chrystal (who also does pool therapy), OT with Jess, Speech with Haley, and Equine Assisted Therapy with Lorrina, I believe that Torah is getting stronger and will maybe one day be able to sit by herself. She still goes to the Development Center 4 days a week for 2.5 hours each day. We are also getting very excited for the 2012-2013 school year when Torah will progress over to the Primary School and start Kindergarten. Crystal is in the process of making sure the school has all the equipment that Torah will need (she is a bit longer than most kids and already has out grown all the equipment that the school owns). I will be calling to set up a weeks stay for Torah at the Shriners in Salt Lake City for them to fit her for a new wheelchair that will support her better for school and also some new braces for her back and legs.

We have found her a new neurologist close to home in Casper. Met with her once before Christmas and I am very happy with how everything went. We might be calling her office already tomorrow to try and get Torah in for an EEG to see if she is having a seizure when she falls into her "spells" where she sleeps for 4-5 days. This new doctor also has told us that we should be able to have Torah come to Casper (which is only 45 miles from home instead of 200) when she has her "status seizures". This was very good news to hear and I just hope and pray that it works out. The decision is now weather or not we take her to the ER here in town where they never know what to do with Torah when she dose have one of these seizures, or do we just take her strait to Casper on our own?? Guess we will make that decision when the time comes.

We did get a new Tomato chair for Torah to use here at home and she loves it. It will also allow us to attach it to a chair where she could sit at a table as well. We are waiting for a tray that goes along with it plus some head phones that she can use with the iPad. I am already making my shopping list for our next order!!

I am in the process of becoming a provider for Torah, were the state will pay me for 4 hours each day to take care of her. This will be a welcome gift and help out so much . . . but it comes with its share of paperwork. Not sure exactly when I start, I still need to watch a video and get a few more things turned in. I have to have two people write letters of recommendations to the company I am going under, so if anyone is up for the task in the next week or two . . . please let me know!!

Sorry it has been so long since my last update, I do what I can and will try to do better!! :)

Torah's 1st Hippotherapy

My new job is working for a gal that is a Physical Therapist. In addition to her every day therapy sessions, she also runs a Non-Profit organization that helps kids with the use of horses. It is call STRENGTHENING GAIT. Torah had her first session on the 29th of August while my dad and sister were here in Wyoming visiting us. The pictures are all thanks to my wonderful sister!!! Thanks again Chrissy!

We were at an outside arena that a land owner is letting Lorrina use. The property was just sold and will be no longer available to her to use as of September, so for the winter she will be using the arena at the State Fair Grounds here in Douglas. It was a beautiful, warm day to be outside and Torah did great on the horses (Prince and Rascal). Sadly in the same area, search crews were out looking for a Dep. Sheriff that was swept away by the river the day before. I was glad that the horses did so well with the helicopters hovering the river not far from where we were working. The Deputy was found on Sunday and our condolences go out to his family!

Torah had a blast and did so well. Her helmet kept falling down in her face, but she did not seem to mind at all. Catey was a great help riding on the horse with Torah (otherwise I might have been up there and that could have been very interesting . . . maybe I can get some lessons!!). We are going to try and keep this up. I am really hoping that it might help her figure out her balance and maybe even help her scoliosis as well.

Below are some of the pictures that Chrissy took.

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!!

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!