Things are looking better

The doctors extibated her and took away all breathing support since Torah was about to do it for them anyway. She did fine for about 15 min before she kept having apnea spells. After going out to eat and coming back - the doctors had decided to put her on a CPAP machine to help her get past the apnea spells . . . sad to say that it did not help much. Plus every time she yawned or coughed she would loose the seal around the mask and the machine would beep at us (constantly!). Bob and I talked to the resident and tried to tell him that we thought she was having small seizures (staring spells - plus her eyes were so dilated and did not respond fast), but he did not seem to think that seizures were the cause. Sometime around midnight the doctors did rounds and the head doctor checked her out while she had one of these spells that cause the apnea and decided to put her on a seizure medication to help stop them (if they were seizures) . . . sure enough the medication helped but only after her blood pressure dropped to 80 over 30. She did bounce back and had a pretty restful night. After shift change this morning - our nurse Amanda that we had yesterday too - was tired of Torah trying to take her CPAP mask off and had the Respiratory Therapist come in and disconnect her from the machine. She has done good since then with only a few time of her holding her breath and destating down in to the 80's.

Sounds like the Neurologist are going to come talk to us this morning and then get Torah moved up to their floor and out of the PICU maybe around noon today. Just praying that the doctors can keep an open mind and maybe help us with all of this new information. Thanks so much for all of the prayers . . .

Yet another seizure

Sad to say that Torah had yet another seizure. We had come home to Kansas for Bob's grandmas funeral and while we were at her burial, Torah started to have a seizure. We started at a Clinic in Blue Falls and they ended up shipping her to the hospital in Marysville where the flight crew from Children's Mercy in Kansas City came to pick her up.
The seizure started around 3:40, and at that time it was more like one of her staring spells. By 5:00 (that is when we arrived at the Marysville ER) it was the worst seizure I have seen. The ER staff gave her meds to stop the seizure but it pretty much just slowed it down to where her eyes were the only thing twitching. During the flight to CM, Torah did have another 4 min seizure and was given more meds to stop it. The flight crew felt that they did not need to intibate her for the flight because they had her breathing under control. The flight took off and Bob and I headed to KC. By the time we arrived around 9:30p - the doctors had deceided that they wanted to intibate her since her air way was being blocked by very thick saliva and secretions.
As of right now the doctors want to start getting her off the breathing support and see if she can breathe on her own, but every time they put it on the CPAP mode, her respitory dips down and they have to start her back up on full support. Not sure what the plan will be if she can not breath on her own yet . . . will keep you updated and post more when I can. She also has been running a high fever since arriving here and they can not seem to get it to drop yet . . . not sure about that yet either.

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!