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). 

Doing better Today

Torah had a better day yesterday and so far today is doing great. Reflux has calmed down and I am able to up her feeds from 30-40 ml/hr to 60-70 ml/hr. I will still be interested in what the GI doctors have to say about why the reflux keeps acting up. They talked about putting her on a medication to help her stomach empty faster, not sure weather or not they will.
She has her OT and Pool therapy today, last week was a little rough and she did not want to work. I hope that she has fun with Bonnie today and wants to work, because Bonnie can do so much more with her when she cooperates.

Upcoming visit to TCH

Well, I was trying to schedule with the GI doctors and the Special Care doctors - a visit maybe sometime in mid February for us to take Torah back down for some follow-up care. I guess that the GI clinic was not happy with that and really do want us back down there "1 month" after being dismissed from her last inpatient stay at TCH. So, we will be heading back to TCH next friday (the 23rd).
Dr. B (one of the GI docs that we saw last month) called me today to talk about Torah's reflux and what has been going on since we last talked with him. I told him that her reflux has not improved since we have been home, and she is 'healthy' and should be not having problmes with her reflux (ecpescially since she is on 30 mg of prevacid daily). Sometimes I wonder if it could be the food that we are giving her since it is the only food that she has ever been on after the g-tube and fundo were done last January; but Dr. B wants to do a radiology study to check out the fundo to make sure that it is still holding first. I know that they are going to put barium into her stomach via her g-tube and see if she 'refluxes' it back up into her esophagus (sad to think that I am actually hoping that she is still having bad reflux that day).
Her reflux is just almost an everyday thing anymore - but it is still hard to watch her struggle with it so much. She is such a little trooper and always pulls through. Even right now as I am writing all this - she is struggling with the reflux. I just hope that they can figure out a way to get her past this part of her journey so that she can move on and get stronger and healthier.
So on Friday the 23rd - I will pack up myself and the kids and head back south for another adventure at TCH. Prayers are always welcome!!