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!!

Spoke to soon!

Well, I think I spoke to soon about Torah's reflux not acting up. It is back and in full swing again, but I am guessing that it is because of her sinusitis. So we are back to feeding her as slow as I can and she is pretty much on a slow drip all day. This is the time that I am glad that we have a suction machine here in the house, because I pretty much am suctioning her out about every hour if not more. She has been sleeping a lot and is not her normal happy self right now. I am just waiting for the weekend and hoping that she does not get any worse than she is. I think that if she is still struggling next week, I will probably call her new PCP and see if we can not get into see him (even though we have not seen him yet).
We are also going to be seeing a dentist in Casper (for Bob first), but I am going to talk to him about Torah and weather or not we should get her into see a special pediatric dentist or just wait a few years.
Oh, and one more note! I talked to the gentleman from U of WY Disability Determination over the phone yesterday. He was going to come up from Laramie to interview us and Torah's OT - but with all the snow that we received - the interstate was shut down and he was not able to drive up. He said that we would receive a letter in the mail in a few weeks stating that we are on the waiting list for the medical waiver. As soon as the government approves the list of people - then we would be approved and would then be able to get Medicaid for Torah and also a lump sum of money to help with bills or equipment that we would need for her. I am already looking at a medical bed/crib like what the hospitals use so that she can be inclined at night and that might help with her reflux. I found a bed that can be used for that and has side rails to keep kids in - but not sure on a price; so we will cross that bridge when we get there.

Sick once again!

Well, I knew it was too good to be true. Torah is having problems with a sinus infection again and her cough (that went away for a few days) is now back and is even stronger and worse than before. She has pretty much slept all day and I hope will sleep tonight as well. Thankfully her reflux is not acting up right now. I hope and pray that she can fight this one away on her own and that we do not have to take her to the ER. We have yet to have our first visit with our new PCP for her and so I would probably not be calling him for this go around unless it takes a turn for the worse.

On a side note - some one from the University of Wyoming's Disability Determination department will be coming to the house tomorrow (29th) to interview me and check out Torah to verify all the information from the psychologist report so that we can get onto the waiting list for Wyoming's medical waiver program. I am guessing that it could still be another year (after being put onto the waiting list) before we receive anything, but the guy told me that it is up to the government (go figure!!)

Back from TCH

We made it to Denver and then back home again safely. The roads were not great (snow and ICE) and we saw several wrecks along the way, but that just helped remind me that I needed to take my time and drive as safe as I could. I did have a semi-truck pass me where the snow was really loose, and after he got around me I had to slow down and almost stop because it was a complete white out. Thank goodness that he was the only one!!!

Torah had an Upper GI done and the test went well. They saw that she did reflux up into her esophagus (past the fundo nissen), so we are just going to keep an eye on things and next time she struggles with the reflux - then mom will call the GI doctor and will see what he wants to change then.

 We also met with the Special Care doctor and we pretty much went over everything that has happened over the past year. She pulled up the MRI done last month and showed me the pictures. She told me that Torah's brain (white matter) has not grown or developed much over the past year and since there is no such thing as "empty space" in the brain, Torah's ventricles have grown and filled in the areas. If you were to look at the MRI picture - her ventricles are taking up most of the brain. Dr. E told me that a normal person's ventricles would be 1/3 the size of Torah's. Dr. E also told me that Torah's scoliosis is at a 27 degree curve and that it is not serious - but for her age and size, it would be good to get her into see a Orthopedic doctor next time we come down. So come April (which will be the time for all our routine visits) we will be seeing 7 different doctors (or clinics) over a two day period: Special Care, Rehab, Neurology, GI, Orthopedic, Optometrist, and maybe a Orthodontist. 

Hopefully Bob will be able to come with us and help out (it always makes it less stressful on me when he is there).