Hoping for a good 2010

Hoping not to jinx Torah any, but it is almost 2010 and things are going well. She is still having a lot of refluxing and sleeping spells that last for about 4 days. Not sure why or what is causing it since nothing in our routine has changed. She does not seem to be bleeding in her stomach from any ulcers and she may seem to have a slight sinus infection, but nothing but a snotty nose.

We do not go back to TCH in Denver for any scheduled appts till April (seems so far away right now). Really wanting some answers, but also not expecting too much either. They will be doing another MRI of her brain at that time and also some more genetics testing to look for any defects in her DNA. Still waiting for Medicaid to pay for her glasses that we ordered last June and also waiting for our primary insurance to deny some claims so that we can get the Wyoming Medical Waiver to pay for them (things like a walker, therapy equipment, support chairs, and hopefully a new wheelchair).
Welcoming a new baby into the house is keeping me very busy right now. Not sure how I am going to handle everything once Christmas vacation is over and all of her therapy sessions start back up. Once she turns 3 in February - she will be put into a classroom like setting (with out me around - that will be hard and different). Also when she turns 3 - insurance will start to pay for her diapers (praise God since I just got one out of diapers (Jace) and another one into diapers (Tyler).)
Keep praying that she stays healthy and out of TCH for now. If she was to be shipped down to Denver for some emergency - Tyler would be coming with me since I am breastfeeding and I am not sure how that would exactly work out. I know that God has everything under His control and He will not give me anymore than I can handle, but still some days can be very overwelming and stressful.

Wishing everyone a HAPPY NEW YEAR and may God bless you and your family!

Too much in little time!

Wow, I can not believe that 2 months have gone by since I have updated!!

Torah has been doing good besides a few relfux episodes. Im still not sure what brings them on, but she has had one about every weekend since our new little addition to the family has arrived. I think that she has also had a growing spurt where not only did she get longer, but her hands and feet look like they grew as well (guess she will be getting clothes for Christmas this year). We have recently just changed Case managers for her as well with the Wyoming medical waiver program. Bonnie has already been a blessing in just the few short weeks that we have had her. We also looking a getting some new equipment for Torah through the waiver soon too, will try to update with pictures when that happens. We did just go back to Denver on the 15th to pick up Torah's TLSO back brace. As long as she has a way to stay cool - she does not mind wearing it, but while she is in the house - she tends to sweat a lot in it and gets pretty cranky after about 15 minutes. The brace does help her sit up a lot better and gives her better stability. As soon as I can find my camera or get a new one - I will try to post some pictures.

There is some BIG and exciting news!! On December 3rd we welcomed Tyler David Hull into our family at 12:24pm by c-section (scheduled). He weighed 8lbs 12 oz and was 20.5 inches long. All the doctors and nurses were just amazed on how big his head was and the doctor actually had to use a vaccum to pull him out of me. He is a very healthy boy that loves to be cuddled and held. It is a good thing that I have had family around to help me with Torah since they have also helped hold Tyler as well when I have to get things done. Thanks so much to my Dad and sister, they were here in Wyoming for the birth of Tyler. When they had to leave and go back home, Bob's aunt Becky and uncle Jon came up for a week to help while Bob was working days. Now Bob's parents are here till Christmas and Jace is having a blast!!

Tyler David - 17 days old

Back from TCH

We made it to Denver and back safely (thank GOD!!!) My vehicle's transmission is not quite running right and I was just not sure what or if something was going to happen, but we were able to drive over 400 miles without any problems.
Wednesday we only had one appointment (made for a non-stressful day). We met up with Torah's neurologist and I had a lot of questions for her about the seizure that happened at the end of August. Funny how she did not know about it and was surprised when I told her. I had told the floor doctors to notify her (since we were there on a Monday and Tuesday - I figured that she would come up to see us and check out Torah), but the staff never did notify her and she was not happy about that. Anyway, she said that even though they checked for some type of an infection that may have cause the fever and seizure and everything came back normal - that does not mean that it could not have been due to an infection. She told me that when they run the test, there is only 6 different things that they look for and none of those were present. So we still do not have any answers, but she did give me a prescription for Diastat (a rectal gel that I inject) just in case Torah was to have a seizure at home. I showed her the video of Torah while she was at our local ER and she agreed that she was having a seizure and asked how long it lasted . . . maybe 30-45 minutes?? I told her that Torah was doing that for 2 or more hours (she was not happy about that either). This is one doctor I wish was closer to us and could keep a closer eye on Torah, but we will have to settle with every 6 months for now. She was pretty persistent that Torah also get the Flu shot, but was going to leave it up to the SCC doctor.
After we were done with neurology, I proceeded to go to the Walgreens pharmacy to fill a few scripts (kinda funny that I never knew this pharmacy was in the hospital after all the visits that we have made there). Then I went back to Health Information to get copies of all of Torah's records for our files. I was figuring on paying over 200 dollars for everything, but thankfully it only ended up costing around 60 and I was even able to get CD's of her radiology tests. These will come in handy if we are ever to see a new doctor.
Thursday we had two doctor visits to make. First one was to see Torah's SCC (special care clinic) doctor and we were the first patient of the day. After getting all of Torah's vitals (39in tall, 33.5 lbs, and head cir 20.6 in) we headed back to see the doctor. Right off the bat she expressed her concern about the size of Torah's head circumference. It has increased quite a bit in the last year while the rest of her body size (height and weight) have not been so significant. So she wants us to monitor this with Torah's PCP and if anything changes or becomes worse (like having more seizures) we will get her scheduled to have another brain MRI before our next visit in April 2010. She also went into depth about Torah getting the regular flu shot but also more importantly the 'swine flu' shot as well. She told me that they have had a lot of small kids with major neurological problems (like Torah has) get the 'swine flu' and end up dying from it because it was not caught in time. So if any person in this house gets a cough with a fever, we are suppose to go get tested for the 'swine flu' as soon as we can. I am always the person to not make a big deal out of small symptoms, so this will be interesting if something does come up. We also met with the dietitian and are trying a new higher calorie formula (or supplement drink) so that Torah does not have to be getting fed all day. I am still trying to figure out how and when to give her the food plus all the water that she needs as well, but hopefully after a week or so it will be where it needs to be.
Our last appointment was with Ortho/Rehab. They did another hip xray which came back looking normal or good, and also a spine xray which showed her spine has only had an increase of 2 degrees since June. They did set me up with a guy that measured Torah's mid-section to start making a Thoracic Lumbar Sacral Orthosis (TLSO) brace to help correct and keep her Scoliosis from getting worse (currently at 47 degrees). It will take about 4 weeks to make and get insurance to pay for and we will probably have to go back to the Denver area to pick it up and get her fitted for it correctly. This will also be something that we have to return to either Denver or Cheyenne, so that Greg (the Orthotist) can always custom fit it for Torah. I'm a little worried about when and where we will have to go since there will be a new addition to our family here in the next 8 weeks.
I feel like I am running a lot of this together - so I hope that it all makes since. Torah's reflux has been acting up today and she has pretty much slept the day away. I am guessing that having her adenoids taken out is not going to help her reflux any, so lets just hope that she does not suffer the whole winter from sinus infections.

Behind on my updates

I realized that I never posted an update about Torah after she had her procedure back on the 17th of September. Everything went great. The doctor first cleaned her ears out and put new tubes in to drain the fluid that had build back up after the old tubes fell out. Then the audiologist did a hearing test on her while she was sedated and the test came back that she can hear 100 percent (they did this test because she never responded to the normal hearing test you do while awake). Finnally, the doctor went in and removed her adenoids. He told me that they were huge and needed to be taken out. Everything together only took about 45 minutes and she was a little groggy after and they had to suction her out quite a bit, but once we got home she acted like nothing had happened and was a happy little girl (pretty amazing!!).
We were hoping that having the adenoids removed would keep her from having all the sinus infections, but 2 weeks after the procedure she developed yet another sinus infection and was down for about 4 days. I just hope this winter is not a repeat of last winter where she had a S.I. every 3 weeks.
On another note, the kids and I will be heading to Denver tomorrow (7th) to take Torah back to The Children's Hospital for her "follow-up" and bi-yearly visits to her specialist. I am truthfully not expecting too much out of this visit. No special test are going to be done, so it is not like any thing new will be found. I will be asking the Neurologist what she thinks happend back at the end of August when Torah had that seizure, but really not expecting her to be able to answer either. Will try to update sooner after we get back from those appointments.
I have aprox. 8 weeks left before our new little baby will be born. Looking forward to that and also all the people that will be visiting. Bob is still in full hunting mode when he is not at work and the fact that the weather cooled off and there has been quite a bit of snow falling is making him want to be out killing something even more. Jace turns 4 today and we had a birthday party for him last night. He had so much fun and really got into the whole birthday thing this year. I decorated the house up and got him the cake he wanted plus we even decorated some cupcakes (which I am sure we will be eating over the next week - good think I am pregnant!).

Video of Torah's Seizure

This is what Torah's Seizure looked like while we were waiting for the Flight for Life team to arrive. After they got to the ER and saw Torah - they gave her 3 different doses of medication to stop the seizure and then had to intibate her for the flight to TCH. It is a 30 second video.

Torah's flight to TCH and what happened

I knew that I would jinx Torah the way I have been bragging about how healthy she has been. Saturday morning she woke up looking great and her normal self, by about the noon hour it looked like her reflux was trying to start up. Around 12:30 I checked on her and noticed that she was not very active and was having a hard time breathing, so I deceided to hook up the suction machine and try to clear her throat and nose out to see if she just was having problems keeping her air way clear. Normally, when I turn on the suction machine and try to suction her out - she puts up a pretty good fight . . . not this time. This is when I knew there was something wrong! Bob was at a shop working on my car (he had worked the night before and was suppose to work that night too), so I called him to come back home so that I could run Torah over to the local ER to have them check her out. Torah seemed a little warm but according to my thermometer was not running any type of fever (which is nothing abnormal for her). After checking into the ER - the staff got her right back and since they were not busy (thank God!!) the ER doctor was right there checking her out to see what was going on. The nurse did a rectal temp and came back with a temp of 95.4 - then the ER doctor told me that Torah probably aspirated some of what she refluxed and they were going to do a Chest x-ray to check for any signs. They tried to start an IV but had no luck (not surprised), so the doctor put in an IO (into her leg) to get fluids started and to start antibiotics and other medications (like reglan, atropine, dexamethasone, benadryl, tylenol, and metroidnasole - I quit keeping track after they were given). Torah started to spike a fever and started to shake a lot. The doctor said that the shaking was due to the medication, but there was some twitching in her hands that was not normal and the doctor also noticed that her pupils were dialated at different sizes and would not respond to light. He then ordered a CT of her head to check for anything going on in her brain area (possible bleeding or maybe hydrocephalus). It took the CT Tech awhile to get the CT because Torah was shaking so bad, but after about 30 minutes they had what they needed and Torah was taken back to the ER. After she got back the shaking changed and persisted for the next 3.5 to 4 hours (the doctor and nurses told us that it was just due to the medication). The Childrens Hospital in Denver was called and Flight for Life was arranged to come and pick Torah up.

When the Flight for Life team arrived they said that the shaking was due to seizures and imidiatly gave her ativan to calm the seizure down, but also had to give her another alternative seizure medication along with more ativan to stop the seizure all together. With all the medication given to stop the seizure they ended up intibating her for the flight down to Denver.
After our 1.5 hour flight to TCH (around 9 o'clock at night) - Torah was admitted straight to the PICU (Pediatric ICU). She had anywhere from 3 to 15 people in her room for the next 7 hours. She stayed intibated till 6am the next morning. During the 7 hour period, the doctors and nurses did many tests for them to look for a possible infection (they had been giving her tylenol all night trying to get her fever down). Some of the test done were a urine sample, blood tests, Lumbar pucture (spinal tap), nose swab, and a few others. Sad to say (or good to say) the test all came back normal (or negitive for any infections), so in other words - the doctors did not know what had caused the fever or seizures . . . so lets just blame it on some unknown "virus".

Sunday, Torah was moved to the 8th floor for them to monitor her. She pretty much slept the whole day sleeping off all the drugs that was given to her on Saturday. Monday, she was showing signs of her normal self and was eating normal doses of food - so the doctors deceided that we would be able to go home on Tuesday (sorry Bob, no Elk hunting on opening day for you!!).
Torah recoverd as fast as she got sick. We still do not know or understand what happend that day and we hope that it does not happen again any time soon. The doctors did up her current seizure (prevention) medication from 200mg to 300mg - so I hope that helps.

I took Torah to see her ENT today to check on her ears and to see if her ears had filled back up with fluid or not. Well, her ears did fill back up with fluid and so she will be getting tubes put back into her ears to help with dranage so that she can hear. The ENT doctor also discussed with me the removal of her adenoids - he said that removing them would help her in many ways and should hopefully keep her from having tubes again after this 2nd set has come out (not a guarentee - but we hope it helps). So on Thursday, Sept 17th - we will be in Casper having tubes placed and also a adenoidectomy.

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

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!!

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!!

New Chair

Torah's therapist brought by a chair for her to use here at the house. It was not what I had posted earlier - but it gets Torah sitting up. Just like the standing unit - Torah did not like it the first time, but she has adjusted and seems to like it. She needs a lot more side (trunk) support, so I am not sure if it will help her so much now, but we will keep using it and see if she does not strengthen up.
Torah seems to be over her sinus infection. She is still having problmes with her reflux and seems to be sleeping a lot lately - but that could just be her bodies way of recouping. I am trying to set up some appointments at TCH in Denver for her to see the GI doctors for a follow-up (I will also be asking them about her reflux issues), and then we will get in to see her Special Care doctor as well. I am also going to be looking into getting Torah to see a dentist or orthodontist soon. Even though she does not eat through her mouth - her teeth are turning yellow and her gums are pretty red. Not sure when we will get it all checked out - but hopefully soon. Maybe part of her problem with things in her mouth is because her mouth hurts . . . who knows!!

Well, that is about all I have to update for now. This mama is pretty tired and is going to try to get everyone to bed early tonight (I did not say that it would happen - I just said that I would TRY!)

Untamed Spirits!!

Great NEWS!!
Torah has been chosen by the Untamed Spirits Motorcycle Club to be their next sponsor child for the year 2009. They have been doing this for 7 years and Torah will be the 8th child with special needs that they have helped with their POKER RUN!
I will update often about what is going on with Torah and the Untamed Spirits. We are looking for a lot of help to have a HUGE and SUCCESSFUL year.
Donations are needed for the raffle (so expect to be buying some tickets to win the raffle prizes). Cash donations are welcome as well. The poker run is scheduled for June. You do not have to ride a motorcycle to join the poker run, families and friends often take the ride in their car and then join the group for the raffle and picnic in the park.
More information will follow soon!

You can send donations to:

Untamed Spirits Motorcycle Club
PO Box 34
Douglas, WY 82633

Untamed Spirits Website

Thank you and much help is needed so spread the word and we look forward to hearing from many friends and family!!

Oh, and I talked to the leader of the club last night here at the house and he said that Torah is a life long member now. They are even going to try and find her a vest just for her . . . how AWESOME!!

Results from our trip to The Childrens Hospital

First are the pictures from Torah's EGD
"Esophagogastrodudenoscopy"
scope that was done on the 21st of December.

These first 3 pictures are the Duodenum (upper intestine)
If you look at the 2nd and 3rd pictures - there is a white spot,
that is the healing ulcer that we suspect has been bleeding for the last 4-6 months.
All of the dark spots are the left over blood that was not flushed out of her stomach when we arrived at the ER at TCH (it took a full liter just to get the fluid to run mostly clear)

These three pictures show part of her stomach which looked normal and healthy.
The 3rd picture is the inside of the Mic-key button that we feed her through - it is just a ballon full of water.

So, pretty much they did find the ulcer that was healing - but they had no luck finding anything that would have caused her to bleed so much on the 17th to make her anemic and have to get 2 pints of blood. The doctors told me that she was probalby just bleeding real slow from the ulcer for the past few months and then whatever caused her to bleed after her MRI pushed her over the edge. We are suppose to go back in a month for a follow-up with the GI clinic at TCH. Other than that - now I just know what to look for and if I ever find the dark brown "coffee ground" substance in her stomach again - I will know that it means blood and that we need to go back to see if she has more ulcers.

Out of all that drama, I did get a copy of Torah's MRI report from the ER doctor. The Radiologist still could not find the Corpus callosum (this is part of the brain that does not ever grow after birth - so she will never have it). They did note a increase in ventriculomegaly with associated periventricular white matter loss.
TRANSLATION:
My guess is that the four ventricals in Torah's brain that have been enlarged (ventriculomegaly) since before birth have grown in size and is making the "white matter" smaller. I have not talked to a doctor to get their translation on this and if any one knows better - feel free to correct me.

Other areas that they reported on her MRI:
~ Pituitary gland is "unremarkable"
~ Optic nerves appear symmetric and within normal limits
~ Left cerebellar hemisphere remains slightly smaller in size compared to the right

Other than all the above - all her test and appointments went well. If you have any questions, feel free to ask. Thanks again for all the prayers and support for Torah.

New Picture links

Here are some new picture links to my facebook account that everyone should be able to see. 

Torah's stay at The Childrens Hospital in Colorado

Christmas pictures from the Nowak and Woods families

Christmas with Dad

Aunt Chrissy took a lot of other picts and I will try and get them posted as well

ENJOY!!!

I will soon post an update of all of Torah's test done back on December 16 & 17 and also the scope that the GI doctors did on December 21.

Back in Wyoming!!

Well, it is a new year and Torah is almost 2 years old. I can not believe how fast this last year few by. I am trying not to think about all the things that I have to do just this month for Torah. We missed our last appointment with our favorite doctor that has left Wyoming to go to another state, so I am going to be on the phone with hopefully our new doctor in Casper seeing when we need to schedule our first visit with them. Torah also has not had much therapy done in the last few weeks and we are needed to start that back up and get her moving again. Have not heard anything about the seat that the therapist were trying to find for her - but that will come in time. I also am needing to schedule a follow up appointment with the GI doctors down at TCH sometime this month (or maybe February). We just started a new insurance for our prescriptions and so far it has proven to be better than our last - time will tell, but at least they are covering her reflux medication with no questions asked.
Torah still has a pretty bad cough and also a nose that will not quit blowing bubbles. She has learned that she can take her right arm and wipe the snot all over her face - so mom has been trying to stay on top of it (yeah right!) I think the antibiotic that she is on has cleared up the infection - but now we just need to get rid of the rest.

Thanks again for all the prayers and support that went out for myself and all of my family during the last few weeks. My sister and I both left today to go back to our homes (miles away from dad) so now my worry starts for my dad. I am sure that we will be back soon to check in on things and he is always so happy to see us!