Follow-up after seizure and apt's at TCH

It has been a few weeks now since we were at TCH for Torah's bi-yearly check-ups with her specialist. We started off Wednesday the 10th with her Brain MRI (it pretty much took up the whole day). From what her doctors can tell, nothing has changed since December 2008 when we had her last one done. I guess this is good news!
Day two was filled with 4 different appointments. We went and saw Dr. E with the Special Care Clinic. She helped us change Torah's Previcid medication to better control Torah's reflux and it has worked until today. She was concerned about Torah's Blood Pressure since it was high so she ordered some blood work to check and see if something was causing it to raise, she also ordered a new genetics microarray test to see if they can find anything new in Torah's DNA that may have caused all of this. Dr. E agreed with Bob and I about maybe bringing Torah down to TCH every 4 months instead of every 6 months since she was having seizures a month before we were scheduled to be there - in other words, Torah was out growing her anti-seizure medication. As of right now, Torah is in the 95th percentile for her height ( 40.5") and weighed in at 36.8 lbs. I did ask Dr. E about getting a sleep study done for Torah to see if she needs to bee on oxygen at night and this was only brought up because when Torah is an inpatient and is hooked up to all the monitors - her O2 levels always drop when she sleeps and the doctors are always asking me if I have her on oxygen at home . . . "No, should I?" is my response. So soon after getting home we did get the study done and are waiting for the results.
Our next appointment was with Orthopedics/Rehab (2 doctors at once is nice). They did a xray of her hips and also of her spine (with and with out her back brace on). Nothing was mentioned about her spine - so, I am guessing that it has not got worse and the brace is doing its job for the most part. The Ortho doctor jumped right in about her hips though. They have been watching them for the past year and were not too worried until now. He wants to do a Varus Derotation Osteotomy (VDRO) procedure on her and we have scheduled it for the end of July. The procedure will consist of them cutting a piece of bone out of each femur so that they can line up the femur (thighbone) and the hip. Below is a picture of a dog after it had the procedure done (it was all I can find):
Dr. C said that she will not need to be in a cast after the surgery since she really does not have any risk of falling (this is a good thing since Torah does not like to be restrained in any way). She will be at TCH for 3-4 days after and it will take about 6 weeks to fully recover. I have talked to Torah's OT and PT and they both agree to up Torah's therapy around that time to help her get stronger. Dr. C also will be doing a Iliopsoas Lengthening (I was told this is pretty much done every time they do a VDRO).
We also saw Dr. P in neurology and she was happy with what the doctors did when Torah was flown down after her status epilepticus (this is what they are calling her seizures)

Our new year with the Waiver starts in June - and I will be looking at getting some new equipment for Torah. Most of which will be in the form of seating and the biggest thing that we need is a wheelchair since she has outgrown her KidKart so fast. With her also starting school - we need to get a chair for her to sit in there as well.

I feel like I am forgetting stuff , but I guess if I remember it later I can always post again. I know I don't get on here much, Tyler seems to keep me busy - and if it is not Ty, then either Torah, Jace or Bob needs me . . . so goes a mom's life!

I am looking forward to some friends that are coming to visit us over the Easter week - I always love having company around. Hopefully the weather stays nice and we can do a lot outside!

I hope everyone has a wonderful and Happy Easter!

Seizure #3

Torah being moved from PICU to the 8th floor

Torah shortly after they removed her breathing tube

February 19th will now stand out in my head for two different reasons now: first is my anniversary to my wonderful hubby (this would be our 5 year mark), and second is now my daughters 3rd seizure. Sad part is, is that Bob and I actually thought that we were going to be able to get away from everything for a mini-vacation . . . ok, it was just a thought!

We had a trip planned to Jackson Hole, Wyoming - still in the state, but on the other side of the state and only about 8 hours away from home (and TCH in Denver). We dropped the kids off with my cousin Bethany and her fiance Clay in Laramie and planned on being gone Friday-Sunday. Needless to say, we were back in Laramie at 6am Saturday morning.

Torah had her seizure around 10pm on Friday and knowing how scared Bethany and Clay must have been (since I get scared myself), I am so thankful that they had Clay's brother Cy, who is a paramedic, to call on. They were able to get her over to the hospital in Laramie and the staff there was able to get the seizure under control. Because of the weather, the Flight For Life team would not be able to come get Torah and take her to TCH in Denver until the next morning. Bob and I arrived in Laramie around 6:30 and we then waited for the next 4 hours for the flight team to arrive. We then left so that I could get in the van and drive the 2 hours (plenty of time for the flight team to get Torah to the hospital). Torah did not arrive at the PICU until around 3:30 and I was not able to see her until 4:30.

Once at the PICU at TCH, the neurology team did a EEG on her to check for any type of seizure activity (but yet none was found - go figure). They also checked for any kind of virus and that all came back negative as well. So yet I have a very "healthy" 3 year old girl that has long seizures for no unexplained reasons.

We did get out of the PICU today around noon and she has been doing great except for a small lingering fever. I am hoping that the doctors will let us get out of here tomorrow - but not sure yet and will not know much until the morning rounds. If by chance they do keep her a few more days, I am going to see if there is any chance that they can get her Brain MRI done now instead of on the 10th (not holding my breath though). She also got to sleep in a "Big Girl Bed" - or a normal hospital bed instead of a crib and I kind of think she likes that!

This seizure was a lot like the last one that she had back in August (from what I gathered from my cousin). Thinking that a fever caused it, but what caused the fever???? The neurology team upped her Keppra (seizure medication) from 300 to 400mg (was 150mg last summer). Granted she has grown a lot in the past year and the doctors say that they still have some play room withe the dosage - so we will see what happens.

Thanks so much to everyone for all the prayers and thoughts! This is never easy, but God always knows what He is doing and somehow give me the strength to get through it all.

Will post some pictures when I get back home.

Torah turns 3 !!!

On February 4th - Torah turned 3 years old! I can not believe that she is 3. Last year went so fast for all of us and with her being so healthy the majority of the year, it made for a good year.
She still has been having issues with her reflux acting up every weekend, but overall - she is doing really good.
In March, we will be making a trip back to Kansas to see all our family and friends and show off little Tyler (who is not so little anymore). The last two days of our trip we will be back in Denver for all of Torah's check-up appointments and another MRI of her Brain. I'm still hoping for some answers, but also not expecting any either.

We hope everyone has a blessed Valentines day!!

Getting ready to turn 3!!

Well, today I went over to the Family and Child Development Center for Torah's transition meeting. When she turns 3 she will get to start going over to the center and sit in a "school" like setting for a few hours a few days a week. I think that we (the therapist and myself) deceided to start small and slowly transition her over to the center with a goal to have her over there "full-time" by the start of the next school year in the fall. As of now, I have no doubt that Torah will do well since she seems to really like to be around other kids. The therapist all have there own goals and will be working with her to reach those goals, some of which are: sitting with minimal support (with brace on), some form of communication, learning new sounds and trying to get her to use her tounge and lips to make noise maybe even some words, and hopefully after we get her glasses - get her to do more with her hands.

She has been staying healthy (knock on wood) for the most part besides still having her reflux act up almost every week if not every 10 days. I am in the process to start scheduling her appointments down at The Childrens Hospital in Denver (hopefully for April) and I am really praying hard that it can be scheduled for a time that Bob is not working so that I do not have to make the trip by myself with all three kids.

We are still trying to get Medicaid to pay for her glasses so that she can start using them and we are also waiting for our primary insurance to either pay or deny the equipment that we are trying to get through the medical waiver. Things just seem to be taking their sweet time and before we know it, it will be time to start all over again . . . so goes our life. God has really taught me patience in the past year and I'm sure that there is still much to learn.

Some other good news: A friend that works with Bob recently gave us a Loft bed for Torah for a great price. We had been looking at them, but not really sure how we were going to buy one since they are pretty pricy. We had actually lined up for another friend to make one for her this spring. God does know our needs though and did answer a big prayer!! (picture below)

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.