A Good Month

We have made it half way through the year and the light at the end of the tunnel has exploded before us with so many blessings. Torah's health for the most part is doing great (excluding a few reflux problems). She has had a few problems with her ulcer bleeding for short periods, but the doctors are not worried and are keeping an eye on her.
We were notified at the end of May that Torah was going to be taken off the the waiting list and activated for the Wyoming Medical Waiver Program that we have been tyring to get for her for the past 18 months. So Torah now has Medicaid as a secondary insurance and the State will be allowing so much money each year for us to use for medical equipment or services that insurance will not pay for. This is a true answer to prayer.
More good news is that tomorrow (Saturday, June 13th) will be the Poker Run for Torah done by the Untamed Spirts Motorcycle Group. We have been looking forward to this day and we hope it all goes well. Torah was also in the Douglas Budget Newspaper this past Tuesday. Here is a copy of the article that was done -

World’s youngest biker chick ready to ride By DANI BYER Reporter/Photographer She’s a sweet little 2 year old with bows in her hair and great big smile. She has a precious laugh and a caring family. She’s also got a leather jacket. On June 13, Torah Hull will turn into biker-for-a-day, donning that leather jacket to follow a crowd of motorists around Wyoming to participate in the 8th Annual Robert Uttenhove Memorial Benefit Poker Run presented by Untamed Spirits. Torah, this year’s poker run child, was born with CNS dysgenesis, a medical problem which involves the incorrect development of the brain. “Her ventricles are about three times the size they should be,” described Torah’s mother Kelly. She explained there is no empty space in the brain because the ventricles are simply replacing parts which failed to develop. CNS dysgenesis is a practically unknown medical condition, and Torah really has “no diagnosis.” Doctors assured Hull that nothing she did during pregnancy caused the condition and, thus far, Hull confirmed that they had found “nothing in the DNA” to explain what went wrong. The couple noted Torah was born early, causing additional complications with her colon. Every six months, Bob and Kelly Hull, along with their 3-year-old son Jace, load up with Torah for a family road trip. However, unlike most family road trips, this one doesn’t end at a vacation hotspot. Instead, the family’s destination is the Denver Children’s Hospital. The Hulls sees neurologists, GI doctors and orthopedic specialists to make sure that everything is functioning as it should be. Aside from the bi-annual trips to Denver, Torah also visits therapists in Douglas three times a week where she works on her motor skills and building her strength. As of now, Torah has no balance and cannot sit or crawl. The Hulls are hoping that with therapy these skills will develop. “(We are) crazy with doctors, (but) we deal with it,” Kelly said. The family has had some pretty nerve-wracking health scares in the past two years. Last year, Torah was rushed to Denver three times, once for a seizure, once for a perforated bowel, and once for internal bleeding. The 2 year old also suffers from ulcers. According to Bob, the couple’s goal for this year is “no more airplane rides,” in reference to Flight for Life. While little is known about CNS dysgenesis, the little material that can be found often describes a fatal prognosis. Thankfully, Kelly said that nothing about Torah’s case points to fatality and the couple should be able to enjoy their little girl for years and years to come. The Hulls have just received word that Torah has been accepted for a medical waiver from the state of Wyoming, which will help to provide the couple with a respite system. They have had difficulties getting monetary assistance in the past because Bob makes too much for most programs. The new waiver looks not at Bob’s wages, but instead at Torah’s personal case. Kelly said this one is “just about her.” Bob works at North Antelope Rochelle Mine, which allows Kelly to be a stay-at-home mom for the couple’s two – soon to be three - children. The couple plans to use the funds raised during the poker run to help pay for Denver expenses and supplies for Torah. The couple admits that a lot the equipment that Torah needs, such as a chair that enables her to sit on her own, is borrowed. With the money that is raised this weekend, the couple will hopefully be able to purchase some of the necessities. Torah is growing quickly and the Hulls hope to obtain a shower chair and a wheelchair that will fit her size. The Robert Uttenhove Memorial Benefit Poker Run was started eight years ago by the Untamed Spirits Motorcycle Club Founder and President Terry Uttenhove. “I started it in memory of my son. He loved children, and what better way to keep his name alive than doing a poker run for sick kids,” Terry said. Robert Uttenhove was killed in a motorcycle accident in 1996. To select recipients for poker run funding, members of Untamed Spirits approach families in the community who have a child with an illness to see if they would be interested in filling out an application. Applications are reviewed and voted on by the club in order to select the youth who will be the face of the year’s poker run fliers. Registration for the poker run is June 13 from 7:30-11 a.m., beginning at Speedway Superstop. After paying $15 for a hand, participants will jump on their bikes, or in other vehicles if they so choose, and venture to Glendo, Wheatland, Guernsey, Torrington and Lusk, picking up a card at each stop. The poker runners will meet back in Douglas at Washington Park by 5 p.m. to draw the final card. Participants will make a hand from the top five of their seven cards and a prize of $500 will be awarded to the winner. The winner of the low hand will receive $100. Aside from the poker hand winnings, numerous prizes will be raffled. Tickets are being sold for a dollar a piece or six for $5 and grand prizes include a 42” television and a $500 shopping spree to Douglas Hardware Hank. On Saturday, as community members race around the state, they will not only be enjoying a game of poker, but will be helping to care for one of Douglas’ own. If you are lucky enough to see this crowd race by, keep your eyes peeled. You just might see the cutest biker-chick in town.

We also just got back from our bi-annual trip to TCH in Denver for Torah to see all her doctors for check ups. First appointment was with the GI clinic and they pretty much told us that she looks good and unless somthing goes wrong we do not need to plan on seeing them again. So there is the start of our good news. Second appt was was Neurology - was a little late to the appointment, but it was a good appointment and a very lenghtly one. I pretty much went over the past 8 months with the doctor and told her that we were expecting our 3rd child in December. She was very helpful gave me lots of great advice for future years with Torah. I asked her about the prognosis for Torah and what we would be looking at for Torah in the future - she told me that we should not expect too much more than what she is now since Torah has not made any huge improvement in the past two years. She told me that Torah could still make progress and learn as she grows - but they do not know the extent of what she will be capable of. The third doctor we saw was for Rehab and she told us that she would be transfering to Washington State in a few months so we would be getting a new dr, but she reffered us onto the head doctor of the Rehab clinic and it worked out great because he does clinics up in Cheyenne, Wyoming and also he does clinics with our new Orthopedic doctor (will make life a bit simpler for us - I hope anyway). On day two at TCH we first met with our Special Care doctor (which is our main doctor at TCH). It was a good appointment and she told us that in the next year she will be doing another DNA Genetics test to check for any new abnormalities in Torah's genes. She also is going back to her books to look at some new information because of certian things that stick out to her about Torah (like Torah's very long fingers). In a way I hope that she ia able to find something, but if not - at least we know that she is still wanting to figure out what is going on and maybe some day she will come across something that matches. Our final appointment was with the Orthopedic doctor and they did new x-rays of her spine and hips to follow up from her x-rays from December. Torah's spine has gone from a 29 percent curve to a 35 percent curve, but the doctor just thinks that it is because she has such low muscle tone and not enough support. So he will be working with our new Rehab doctor to hopefully help correct it instead of letting it get worse to where we would have to go to more invasive correction.

So that pretty much sums up our last few weeks. Will write more about the poker run after tomorrow and hopfully be able to post some pictures for you as well. Thanks again for all the prayers and support!