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!