Too much to worry about - but we are making it through it all some how!

I am sitting here tonight watching Torah sleep. She has been such a trooper lately and has been so happy through it all. As far as I know - she got her first ear infection on Sunday and we are on day 5 with no end in sight yet. I have never seen so much stuff come out of a ear before let alone different stuff everyday (lol). I only had to give her Tylenol one night - so it does not seem to bother her any and she even laughs at me when I try to clean her ear out. Who knew?? Another funny part about it all is that Monday morning we were in a blizzard warning and were in no way shape or form going to get to Casper to see her doctor. I called them on the phone and let them know what was going on - a few hours later, my phone rang and the doctor called in a RX to our pharmacy (no questions asked). Then you hear on the TV " This is the Douglas Police Department - we are asking that there be NO unnecessary travel out on the city streets". Luckily I have 4 wheel drive and made it to the store and back home safely (but you could not see more than a block because of all the blowing snow).
Terry with Untamed Spirits came by the house last night to drop off the raffle tickets for the benefit that they are doing for Torah. If you would a ticket ( $1 = 1 ticket / $5 = 6 tickets) email me at kelle.hull@gmail.com - The poker run will be June 13th.
Upcoming for Torah in the next few weeks are a couple of appointments. We are going to be heading to Lander, WY to meet with the Wyoming First Step Diagnostic Clinic. While we are there, she will see the Wyoming Educational intervention Assessment Team consisting of a Vision specialist, Physical Therapist, Speech Therapist, Occupational Therapist, and a Hearing Impaired Specialist. Then later we will also see a Audiologist, Pediatrician and a Low Vision Specialist. So it will be a full day of doctors and specialist (just like Denver). The week after the appointment in Lander I (as of now) I will be heading back to TCH in Denver to see a few doctors. I am trying to get it pushed off for another month so that we can hopefully try and get all of her doctors in in the two days that we plan to be there. If we go in a few weeks - we will only be seeing 3 out of 6 and we would not plan on being back till the fall for our regular visits. So once I get a hold of our SCC gal that sets up all our appointments - we will see what can be done.

Wishing for wammer weather!!

It is March (actually March is almost over already) and we made it to Missouri, Kansas and back to Wyoming safe and sound. Although we did pick up some cold bugs and Bob got his had bit by his brother's dog. Funny how a guy can go slaughter a deer (or other wild game) but the sight of his own blood makes him almost pass out (I had to laugh at him for that one).
We met with Torah's new PCP before our trip. It was just a well child visit with some lab work (that must have been normal since I did not get a call back from the office). We also saw her ENT doctor to see how the tubes in her ears are doing. The tube in the left ear had finally slipped out and the doctor said that the right one would come out any day. He also told me that it looked like the left ear was filling back up with fluid. I told him about all her sinus infections this year alone and he wants to wait till warmer weather (June) before making any big decisions.
We go to Lander, Wyoming on the 3rd of April to meet with a group of specialist that have clinics to see kids like Torah. It is all being paid for by the State. I just hope that it will be beneficial and that we can learn something new or maybe they might have some new ideas on how to help her.
BAD NEWS: I just got a letter from our medical insurance telling us that Torah's pool therapy will no longer be covered because they see it as maintenance. So, until I get that straitened out - no more swimming for Torah unless I can come up with the 65 bucks for each visit. Oh, and they are not paying for the past few months either - so that is another 600 dollars to pay out as well. I have a feeling that I am going to be sitting on the phone with our insurance company to see how we can get at least the past visits paid for. We had such good luck with our insurance when we first started - and now it is just going down hill fast. I am hoping that their is one person that I can deal with - but you never know with stuff like this.
Torah is growing and trying her hardest to keep up with her brother Jace. She is about 37.5 inches long and is 32 pounds. I am getting to where I can not pick her up very well when she is on the floor - but I am not sure how to resolve that issue either. At some point everyday I need to pick her up at least 5-10 times (if not more). I guess I should make me a monthly visit to see a chiropractor (yeah right - insurance would love that too).
Not too much else to report for now . . . check back soon!!

Sick once again!!

Torah has managed to get yet another sinus infection. This one was a bit different from the other three she has had in the last 3 months. Her right eye (or the skin around the eye) started to turn red and it started to leak the yellow stuff and would dry up so fast that her eye would be glued shut at least twice a day. Then the day that Bob and I left to go on a 2 day outing for our 4th wedding anniversary (with out the kids) - Torah deceied that a few hours after we left would be a good time to have her nose start running and it was green (or so I was told). Our friend Robin watched Jace and Torah for us and I do not think she got much sleep that night due to Torah's snotty nose or her reflux acting back up. We are on day 4 and she seems to be getting better - but her nose is still running and reflux is still an issue. We finally have an appointment to go see her new PCP and then the day after we see him we will go back to Casper to see her ENT and I have questions for both of them about trying to figure out why she has had a bad cough for 3+ months and also why it seems that about every other week she seems to get a sinus infection. I know that winter months are hard on little ones and she always has something come up - but I do not need anything keeping Torah sick and then lowering her immune system and opening her up to even more. We have a trip coming up next month and the last thing we need is for her to end up back in Denver at TCH for a week or two. So just pray that she can get better and stay better till spring comes.

Not sure what is arund the corner

Happy late Valentines Day !!

Torah has been doing good the past few days which is good since we had a close call last week with her stomach again. I am not sure if she is bleeding (from an ulcer) again; but we did find more brown color in her stomach contents. I called the GI doctor from TCH and we are going to keep an eye on her and her stools (so much fun!!!). Her relfux has not been good and comes and goes as often as the weather changes. The GI doctor has concluded that the food she is on is not causing the reflux and is now thinking that she may need a GJ tube (instead of a G-tube). I will be calling the doctor back and giving him an update on how she is doing this week. She was also sleeping a lot and he said that her being tired could be a cause of loosing blood too so he may be ordering another blood test to check her blood levels and make sure everything is where it needs to be.
We have yet to get her into see her new PCP - but that is another phone call I will be making this week. I do not like bothering them all the time - but I also do not want to wait till an emergency comes up. The GI doctor said that she is a very complex patient and that it takes awhile to go through everything that she has gone through in the last 2 years of her life. I think he gets what I go through when I get asked by a doctor "So tell me about Torah and what is going on with her" . . . I HATE that question. I am in the process of revising her medical journal (that I some how have not worked on for about a year now) and I have my work cut out for me, but once I have it caught back up - then it will make my job a little easier and I can just hand them the book to copy when the dreaded question is asked. (Not sure if it will work out the way I want - but it is worth a try).
We have started to try and give her food by mouth as part of her Occupational Therapy and she does not like to have anything get close to her mouth, but she acts like she likes the flavor because she will start to clap after each bite. So we are hoping that if we keep it up and she realizes that food is a good thing (or maybe she finds a food that she likes) that she will stop fighting us feeding her (I will jump up and down for joy that day!!!). She is getting stronger and loves to be moving all the time, her head and neck control is definitely getting stronger. She is also getting more vocal, but still not using her lips to make words.

Watching Carefully!

Torah had a great birthday and I think even enjoyed all the celebrations. She was healthy and happy and we could not have asked for more.

Torah's 2nd birthday pictures

The sad news is on Sunday afternoon Torah took another turn toward being sick again. She started to vomit and this time she threw up more than she has since the fundo was done to her esophagus. About an hour later, she vomited again (still more than normal for her). I had backed her feedings down from 70 ml/hr to 40 ml/hr so that her reflux would not be so bad. She seemed to go to bed fine and slept good, but still vomited again in the early morning hours on Monday. Bob and I thought that we should vent (burb) her and get any excess air out of her stomach, and it worked right away. As some of the food in her stomach came up the feeding tube (during venting - very normal) I noticed that it looked dark brown again. So I got a feeding syringe and pulled more of the food in her stomach out through the feeding tube and sure enough most of it was the dark brown. I called the GI doctor that has been seeing Torah for the internal bleeding and he is a little concerned and is realizing how complicated she is (tried to tell him!!). He wants me to just watch her stools and see if they turn to a dark brown or black. He is thinking that we might also be looking at changing her feeding tube from a g-tube to a gj-tube and just bypass the stomach and have the food go straight into the intestine. Not sure yet what is going to happen, but will try to update as I know more. I am still trying to get her in to see her new primary doctor in Casper so that he can get aquainted with her before an emergency. The GI doctor may also be ordering some blood work to check Torah's blood levels - he does not want her to get so anemic again that she needs another blood transfusion (like what happend in December).

Ok - my mind is tired and I need to get off this computer :o)
I will update soon on how she is doing!!

The BIG 2 !!!!!

You have been such a blessing to me your father and many other people that have come to know you. I am so glad that I have had the chance to grow with you as you have tried to figure out life and your surroundings. You have many obstacles ahead of you but you have also over come many already and God has made you so much stronger because of it all. I do not know your future or the path ahead of you, but I know that you will find a way through it and Jesus will be holding your hand the whole way. I love you so much and look forward to all the years that we have to share with you as you grow. I am sure that your "Mema" is watching over you and protecting you as much as she can now that she is with our Lord, she loved and cared for you so much while she was here on this earth and even though your mom though that she was to concerned and to over protective, she was always looking out for your well being and wanted the best for you. So HAPPY BIRTHDAY TORAH!!!!

Untamed Spirits UPDATE!

Terry from the Untamed Spirits here in Douglas came by today to try a vest on Torah. He decided to get a bigger one since Torah will probably will grow some in the next few months. He also brought by a poster that they will use for the Poker Run this June.

Untamed Spirits
proudly presents the
8th Annual
Robert Uttenhove
Memorial Benefit Poker Run

~ June 13, 2009 ~

All vehicles welcome!
Cost: $15.00 per poker hand
Speedway Super Stop
1728 Richards ~ Douglas, WY
Registration from 7:30 - 11:00 am
Last card drawn by 5:00 pm at Washington Park ~ Douglas,WY
High Hand ~ $500
Low Hand ~ $100

Proceeds Benefit
~ TORAH HULL ~
Suffers from CNS Dysgenesis

Numerous Raffle Prizes
Tickets $1.00 each ~ 6 for $5.00
Grand Prizes: 42" TV ~ Douglas Hardware Hank $500 shopping spree

I will at some point have tickets for the Raffle if anyone wants to buy some. Just let me know!!