Growing stronger!

Not too much new to update. I am very happy that this has been a good year for Torah. It is almost like her grandma up in heaven is watching over her and keeping her healthy being that we have had no emergency trips (or flights) to TCH in Denver. I am still praying hard that she stays healthy for the rest of the year since we will have a new family member by December.
She is getting so much stronger, but it is like she does not know how to use her muscles for what "we" (the therapist and parents) want her to use them for. We have been working so hard on getting her to sit up with little support, which is coming along good - but she is still so far away. I did watch her the other night roll herself over from back to stomach and it looked like she was going to try to get up into the crawling posistion but only made it about 1/3 of the way. She has also picked her head and half of her back up off the floor and held it for awhile before laying back down. So I know that she has the strength to do things and maybe one day she will actually get there on her own.
The waiver that Torah has been accepted on by the state is in the works and the paperwork is almost done. It is going to take some time to get any of the equipment that we want since we have to bill it to our primary insurance company first (even though you would never expect insurance to pay for half of it), but the waiver will not pay for equipment unless our insurance has denied it first. We will hopefully have her Respite care (qualified sitter to watch Torah) soon, and it will take me some getting use to using it - but will come in handy with a new baby on the way I think.
We go see her ENT next week and I am going to be talking to the doctor about wether or not we should be getting her adnoids taken out to prevent another "winter" season like we had last time. Being our "winters" last from about Sept/Oct to April/May it is a long season and anything can go wrong - so the less she is sick the better for us. We will see what he says since she did have 4 other sinus infections this summer. Also, as of now we are set to go back to TCH in Denver at the first of October for her check up appointments (which is good for me and the baby too). They are trying to get it all in one day since we only will have 3 appts this go around instead of 6 (so much less stressful).
Other family news: I turn 30 in a few weeks (no big party planned with a baby on board). Jace turns 4 in October (I'm hoping to make it back to KS so that we can celebrate with family). Bob will turn 32 in December and had told me that he really does not want to share his b-day with the new baby (so I guess no scheduling a c-section on that day). As of right now I have 15.5 weeks left of my pregnancy (if i go full term). Sounds like my sister and possibly my dad will be coming up this way for Thanksgiving (looking sooooooo forward to that) and I know my sister wants to be here for the arrival of the new baby as well - so we will have to wait and see how that all works out for her. Not really any new pictures - need to get back to using the camera, but there should be enough going on in the next few months that I will try to post something (even if it is just Bob's bull Elk that he is going to try and get this year). Love and Hugs to everyone!!!

Summer update!

Sorry it has taken me so long to get on here to post an update about Torah. Ever since I found out I was pregnant, the morning sickness pretty much got the better of me and if I was not sick I was pretty much exhausted. I am slowly getting some energy back now that I am in my 2nd trimester - but this third pregnancy is definitely taking a toll on my legs and hips. I have been seeing a chiropractor the past month and it seems to be helping a little bit.
Torah has been doing really well this year. She will get an occasional sinus infection and still periodically bleeds from the ulcer in her stomach, but it does not seem to be causing any problems. We just took Torah to her Eye doctor over in Riverton (3 hour drive West). The doctor agreed that her vision has improved, but she still wants to put Torah in glasses (or prisms) to help her see correctly out of her eyes (since she is missing her Corpus Callosum. So once the insurance decides to pay for the glasses - we can go pick them up (who knows when that will be).

Other news! I just had my 20 week sonogram done to check on the new baby. So far the baby is growing and is right where it should be. Everything looks healthy and is where it should be so there will be no specialized visits to denver to see any specialist (YEA!!!). Below is a 3D picture of the new little baby. Heartrate is around 150 and is weighing in around 15 oz. Due date is December 13 - so after the first of November I am going to be ready for anything (being that Torah came 6 weeks early).

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!

"Knock on wood!"

"Knock on wood" has been a phrase I have repeated many times in the past few weeks every time someone asked me how Torah was doing. I was so afraid that I was going to jinx her. Not sure if I did, or maybe it was just the fact that she was doing so well for so long. Thursday she did fine all day except that she slept about 18 hours out of the day. Friday is another story though - she woke up fine and with in an hour was having bad reflux and vomiting more than normal (luckily no signs of any blood), she slept for about 20+ hours. Now it is Saturday night and although she has slept pretty much all day, I have been able to up her feeds and give her more fluids with out causing her reflux to kick in. I am hoping that tomorrow (Sunday) goes better and not worse, but unless something drastic happens we will just rest here at home and try to get her back to normal. We do go to TCH in a month and I will be interested to see what the GI doctor says.

I have misplaced my camera - so there will be a shortage of pictures until I can replace it or maybe even hopfully find it. Jace is doing good, still growing like a weed. I was hoping that the jeans that we bought him this last winter would fit him again next winter - but he is already growing out of them. Thankfully it is only his legs that are growing and not his waist - so all his shorts still fit from last summer. My pregnancy is going well, I am 9 weeks into it and the 'morning sickness' is in full swing (only I would call it 'all day sickness'). The house is not as clean and I dream of getting out of the house, but the moment I get into a vehicle it is like instant car sickness (so I try to avoid that as much as possible). It was pretty bad today - I was reading a report that was done by Wyoming Dept of Education for Torah from the Head Start Clinic that we took her too last month and half way though I felt like I was in a car reading (in other words - I was getting "car sick" on the couch). Only a month more of this and then I will be in my 2nd trimester - I can only hope it goes by quick!!

Not much going on in May for Torah or the rest of the family. June will be busy for us though. I take Torah to see her ENT on the 3rd and talk about what we do about her ears and adnoids. My sister moves back to Kansas from Flordia after her classes are done on the 5th. Then on the 10th and 11th we will be in Denver at TCH. 13th is the Poker Run in Douglas, WY done by the Untamed Spirits Motorcycle Club (we are hoping for a great turnout). Heading to Kansas on the 18th for my cousin Michael's wedding in Topeka on the 19th and then a Family Reunion with Bob's family on the 20th and back to Wyoming on the 21st for Bob to go back to work on the 22nd (no rest for him) . . . nothing yet for the last weekend of June - but things do like to come up!

I wish every mother out there a HAPPY MOTHERS DAY!!
(I love you mom and miss you so much!!!)

Doctor Visits and stomach bleeding

As I mentioned in the previous post - I had thought that I saw some blood in her stomach contents before we left for our trip to Kansas over Easter weekend. I think that I was right because on Tuesday the 21st I saw it again and it was quite a bit (not fresh blood - but the "coffee ground" looking contents). I had hooked her g-tube up to vent her stomach (it is how we burp her - or get the air out of her stomach) and after quite a bit of air came out, all the water I had just given her was coming back up along with the "coffee grounds". So I got on the phone to call Torah's GI doctor at TCH to see what he wanted to do. He had told me to call him directly and not any other doctor - so assume my surprise when the nurse told me that we needed to call Torah's PCP and get her in to see him first. It is hard enough to get into see them and I was starting to get very frusterated. Thankfully, God was not wanting me to stress too much about all this - and the doctor's office told me that they could get her in the next morning. We already had a visit that morning to see Torah's ENT doctor and so her PCP doctor got her in 2 hours after (worked out really well). Wednesday morning we took off for Casper and the visit with the ENT doctor went well. They looked at her ears and agreed that she is not hearing out of her Left ear because it has filled back up with fluid, but her Right ear is fine and the tube is helping keep that ear clear. The doctor does not want Torah on any more antibiotics unless needed (so no 1 month of augmentin to help with the recurring sinus infections). The ENT doctor thinks that they might be taking her adnoids out the same time that they put tubes back in her ears. We go back in June for the doctor to make his final descision. After our ENT appt we went over to see her PCP and he also agreed about her not getting the antibiotics unless really needed. He thinks that the bleeding might be just be a come and go thing (which very possibly could be true). He ordered a blood test and I am guessing that no news is good news. So anytime I see the "coffee grounds" in her stomach contents I will call Torah's PCP and see if he wants to order another blood test.

She has been doing great the past week and has been really happy ( I love it when she is happy)!! Not much else is new. We are still working with our insurance company on the pool therapy, and I am still waiting to hear our final appointment times for when we take her back to TCH in June. The only appointments in May are for Bob and I, so hopfully Torah stays healthy and my stress level can come down before June.

So much good - but so much stress!

We made it back to Kansas to surprise my sister for Easter weekend. She thought that the kids and I might make it to dad's house so that she could see us when her and dad got back from Kansas City, but we ended up going with dad to KC to pick her up at the airport . . . and she was surprised!!! It was a good trip and visit with family. We got to see my dad's sister Marilyn in KC and spend some time with her and Curt & Karla (friends of the family)on Friday and Saturday. Then when we got back to Salina Saturday night - we took my mom's mother Lois out for her 82nd birthday and my mom's brother Rod and his son Ryan were there too - so that was a great night also with family. Now for Easter Sunday - Dad, Chrissy, myself and the kids all went to church in Abilene at ABBC and then took off for White City to spend time with dad's family. So our small trip was a good choice to make since we were able to see and spend so much time with our family. The kids and I also got to see and spend time with Bob's parents and also Great Grandma Carlene on Thursday and then again on Monday. Let's just say that there was not much resting on this trip!!! :)

Torah tried to give me a scare before we left on our trip and I am not sure if I saw what I reall saw - but we are going to wait a while before I jump on the phone to call the doctor yet. She was having problems with reflux again and was spitting up during the night. When I went in to get her up Thursday morning - I noticed some dark brown stuff on her blanket. I tried to get some of her stomach content out through her g-tube but was not too successful. It looked like she might have another ulcer and might be bleeding again (dark coffee grounds), but I have not seen any sign of it since - so we will wait. Funny thing is - is that she was suppose to meet with the GI doctor in Denver at TCH on Friday and it got canclled because it was scheduled with the wrong doctor. Not sure if that was God's hand in it or not.

We are in the process of getting more appointments scheduled for her at TCH for sometime in June, but are waiting for the final word on when they will be. We also have scheduled this week an appointment for her to see a Audiologist to see if we need to get a tube put back into her left ear so that she can hear again.

We do have some good news for Torah! She was approved to get Respite care. She will be watched by a special provider that is approved by the state and we only have to pay a small price (the state pays the rest of the money to the caregiver). So far she has been approved for 40 hours this month and also May, then in June we will have 60 hours. I need to call a couple of people to see who is avalible to take Torah on (since there is only 2 active in our town). Still no word on the the Waiver, but Torah is on the waiting list and we can just pray that it gets approve soon.

We will probably be looking to purchase a new form of transportation this year. We had been talking about and looking at mini-vans that could help Torah better. It is getting very difficult to get Torah in and out of my SUV (I pretty much hit her head on the door frame every time I get her in and out of the car). Something else has changed our situation though and is going to make us get a different vehicle before December . . . we are now expecting baby number 3. We are happy and really excited about this!! Bob wants another boy, I want another girl and anytime you ask Jace what he wants - "I want a sister!". So I guess we will wait and see what God has planned for this next one.

God is good and has been wonderful to us - so just keep us and Torah in your prayers and thoughts!!!

PS - Don't forget about the Poker-Run in June!!

Torah's Vest

Terry from Untamed Spirits dropped off Torah's vest the other night and gave her her first pin. It fits great and will be a treasured item for her. I am really hoping that the turn out will be great and that the group can raise a lot of money for us to use for Torah. I am already coming up with some medical equipment that we can use it for (that insurance will not pay for). So remember, if you would like to help out - contact the Untamed Spirits. I also have raffle tickets and you can email me at kelle.hull@gmail.com