ABR - Need Feedback!

I went to a Parent Training course tonight put on by a couple that has a child with brain injuries. They are with a group called Renewed Hope Foundation and are currently working with a Group called ABR (Advanced Biomechanical Rehabilitation). It has helped their 8 year old son and I think might help Torah in the long run.

Here is the address for the ABR site :

http://www.abrtherapy.com/

If anyone wants to check it out and let me know what you think of it, I could use feed back.
Currently they are based out of Montreal Canada. If you work with ABR you are required to go to the Main site once a year and then one of their other sites (New York, Florida, California, Mexico) 1 to 3 times a year. The Renewed Hope Foundation is trying to get them to set up a site in Casper, Wyoming. All they need is 15 families to say that they would be willing to work with the ABR. The government has even said that if 15+ families sign up - they would be willing to fund some of the expenses that come with working with ABR (traveling, supplies, etc.)
I am going to do my own research - but I think it could help her along with with a lot of other info and helpful tips I picked up tonight. I am going to have my work cut out for me if I do all that they suggest I do to help Torah. I do plan on staying in touch with this couple and seeing how they can help me do more at home to help Torah.
Let me know any thoughts that you might have, I can use any and all support.

Ready for Fall

Well, we have made it though the summer with no medial problems. Still having her sleeping spells, she is even in day 4 of one now. We are increasing her therapy to seeing Bonnie for OT and Pool every week, Chuck for PT twice a month, Janet for OT at home twice a month, and Gail for basic therapy at home every week. I am going to be going to some meetings with other parents and organizations that help kids with multiple diagnosis. I am hoping to meet people to talk to and also more people that can give me information to help Torah as she grows. We went home to Kansas for Labor day weekend and was able to see a lot of our family and friends. I think that Christmas will be our next trip home and we look forward to that. I did measure the kids today and I can not believe how much they have grown. Jace is up to 42 inches and torah is 35 in. The last time that Torah was measured was back in July and she has grown 2 inches since then (talk about a growing spurt).

Good News - but back to scratch!!

We have a new puppy in our family now named Barli. Torah and Barli do not know what to think of each other yet - I am hoping that they will grow to like each other and protect each other.
We have had an EEG done on Torah to check for any new seizure activity and the neurologist have decided that she is not having any kind of new seizures. This was good news, but now we are kind of back to scratch on trying to figure out what is making Torah sick and sleepy all the time. The EEG did say that she is at an increased risk to have seizures - but since she did not have one during the test - the neurologist really can not say that she is having seizures.
About every other weekend she gets hit with something that wipes her out and she will sleep for a few days ( I am starting to call her Lulu when she does this because she is a totally different person - Lulu is what we called here when she was inside me). We have at least one doctor appointment each month from here till the end of the year (some in Casper and some in Denver). One day maybe they will figure out what is actually going on, but until that day - we will keep enjoying her and her happy laughs.
She is really doing a lot better with her head strength and she loves to stand up on her feet (with support). She has had 3 more teeth pop through (giving her a total of 10 now).

Finally an Update

I know that I am a little behind on getting this update onto this blog, but hey, I am finally able to sit down for more than 5 minutes to type it all out. We did make it to Denver last month for all of Torah's check-ups and other appointments. We started with the cardiologist and that appointment was just to make sure that Torah did not have a heart murmur or any other defect. Torah was given a clean bill of a healthy heart and we were told that we should never have to visit another cardiologist again (Good News). Then we went on to see the Rehab specialist (like a physical therapy doctor). She was very nice and did not have anything new for us - so that was a quick visit. The eye doctor was our next stop and I was very impressed with the staff and the resident doctor that saw us. They did not find anything wrong with her eyes, said she was a little far sided and had a small stigmatism - but that normal for small children her age. On Day number 2 - we started off seeing the Neurologist. They were impressed with how far Torah had come since January and said that it is normal to keep children on the anti-seizure medication for up to two years (so Torah will be taking the Keppra until she is at least 3 years old). They also did an x-ray of her spine to use as a baseline. They said that she show a significant dextroscoliotic curvature of the spine and they wanted an x-ray to compare things to down the road. Our last appointment was with our development doctor. We were hoping that she was going to have a syndrome or diagnosis for what Torah's condition is . . . but in all her research, she was not able to connect everything to one specific diagnosis. So as of now all that we can really call it is CNS (central nervous system) disgenisis - meaning abnormal growth of the brain. The doctor was happy with Torah's progress and other than trying to get Torah's constipation under control - we are just proceeding with everything just the same. We will be going back Thursday, July 17th for a EEG to make sure that Torah is not having any further seizure activity and then we will also go back to see the development doctor in September for a follow up appointment.

Other updates about Torah:
Height - 32 inches
Weight - 23 pounds (+/-)
Teeth - 2 (almost 4) on bottom and 5 on top
Able to hold up head pretty good
Likes to stand on her feet
Still has no balance - but is able to sit up with help
Rolls from back to stomach and can pick head up occasionally
The doctor said that she is not ready to be eating by mouth yet - but she does get to taste food

Oh, and we did make it to our new home in Douglas Wyoming. It is a 3 bedroom house - so everyone has there own room and we can still make it possible to keep visitors at the house too. Our next trip back to Kansas might not be till December - but feel free to call or e-mail anytime.

A new doctor to see

Torah decided that she had enough of being well last Saturday and developed a rather harsh cough. No other symptoms stood out to me (fever,vomiting,diarrhea)so I let her go till Wednesday and then took her in to see our primary physician. The doctor thought that it could be do to aspirating since Torah is taking some food by mouth and also because her reflux is slowing coming back. A chest xray was done to make sure Torah was not developing pneumonia due to aspiration, and the test came back normal. After the doctor told me that everything is fine she started to tell me that the radiologist noticed that the area around the heart did not look normal and wanted to know if Torah had ever been diagnosed with a heart murmur. I told the doctor that we had seen a cardiologist before Torah was born and an Echo was done before and after birth, but that the cardiologist could not find anything wrong with the heart at that time. I also told the doctor that about every time we meet a new doctor or whenever Torah is admitted to a hospital - at some point a doctor will ask me if Torah has ever been diagnosed with a heart murmur. After 15 to 20 times of being asked this, I am starting to wonder if there is not something there.
I have talked to Torah's development doctor with The Children's Hospital in Denver and with our primary doctor they both agree that we need to get Torah seen by a cardiologist. So on August 14th I will be taking Torah to a pediatric cardiology clinic in Casper WY to meet with a doctor. I will not know much until then, but as soon as we know more I will update you with what information I get.
Thanks again for all your prayers and thoughts for Torah, she has come along way in the last 16 months.

Summary of the last 15 months

have been trying to come up with an outline of everything that Torah has been though since she was born. This might be a little long - but it will help fill in all the missing gaps that Bob or I seem to leave out when we talk to everyone about what is going on. I think a lot of the time we seem to say that Torah is doing really well and we do not actually say what has happened in the last week. So here is the ups and downs for the last 15 months.

BIRTH - Torah was born on February 4th at 7:11am at Wesley Medical in Wichita, KS. We chose this hospital because we found out during the pregnancy that Torah had enlarged ventricles and could possibly be diagnosed with Hydrocephalus (enlarged fluid filled ventricles in the brain). The Salina hospital did not have a pediatric neurosurgeon on staff and if Torah was born in Salina there was a chance that she would be sent to Wichita or Kansas City anyway. Once my doctor determined that I was in labor, I was then flown to Wichita and taken in to surgery for a C-section. Torah was born 6 weeks early, but still weighed 5 lb 13 oz and was 18.75 in long. The next day a MRI of her brain was done to determine if there was excess fluid in her brain. The doctors said that her ventricles were enlarged but no shunt was needed to drain out any excess fluid. When Torah was 4 days old we received a call from the doctor in charge at night. He told us that Torah's IV was not watched and came unscrewed and she ended up loosing about a third of her blood. They gave her a blood transfusion to replace what was lost and by the time we got to the hospital the next day she was back to normal and doing good. The NICU kept her for about another month to watch her feedings and make sure that her stomach was working properly. We finally made it home on March 6th - but with other problems in the future. About a week after being home, Torah developed a cough and congestion. I took her to the doctor and ER several times but they always sent us home saying that she was fine and it would go away soon. On April 23rd, our doctor finally decided that Torah had pneumonia and admitted her to the hospital for a few days. Torah never did get rid of the congestion.

WYOMING - We moved up to Wyoming around the first of June and I took her to the ER on June 11th - just to make sure that the pneumonia had not come back. The doctor said that it was not pneumonia, but she might have a small ear infection. We met with our new primary doctor in Douglas and also started to see a development doctor in Casper. After meeting with both of these doctors we were then referred on to a Physical Therapist and Occupational Therapist. We also met a Genetics doctor and were referred to a Genetics - Development doctor down at the Childrens Hospital in Denver Colorado. Around September we had another Brain MRI done to check Torah's ventricles and make sure that they were still okay. The MRI ended up showing that Torah was missing some major parts and other parts did not look normal. No other MRI has been done up till now, but one will probably be done before the year is up. The doctors say that if you would do a MRI on a child's brain as they grow - it will always look different because the brain is always changing as we grow.

2008 - A lot has happened this year. on January 4th, Torah got sick again and got dehydrated. She was not admitted overnight to the hospital but was given fluids and sent home with an antibiotic. On January 18th, Torah had a great day and was acting her normal self (she had even had some PT done with a gal that comes out to our house once a week). That night around 10pm I found her on the couch no breathing and not reactive to anything. After finding Bob and we determined that something was wrong we called 911. Luckily an EMT lives around the corner from were we live right now and he was at the house with in minutes. He said that he had not seen anything like what Torah was doing - but it was defiantly a seizure. He was able to get Torah into a position to where she was able to breathe, but she was still not reactive to anything around her. About an hour later we arrived at the hospital in Douglas and was then flown to Denver a few hours later. Torah spent the next 8 days at The Childrens Hospital. The doctors did an EEG and many x-rays. They put Torah's on anti-seizure medication to make sure that she would not have another seizure (she is still on the medication to this day). The doctors also figured out that Torah aspirates when she eats, which is probably the cause to all her congestion from the past year. We are just lucky that she did not have pneumonia the whole time. On January 24th the doctors put a Mickey button into her stomach so that we could feed her and get her the needed calories. We continued with the G-Tube feeds until a swallow study was done in March showing that she could eat some foods without aspirating. After being home for a little over a month, Torah got sick again (due to her brother being such a sharing person). After 4 days of being sick - I took her back to the ER and they found that she had a hole in her bowel. Torah was flown to Denver again for another 9 days (March 4-12)

NOW - After a few more trips to Denver for small appointments and specail equipment which I will write about later. Things are going well. Torah is doing a lot better about holding her head up on her own now, and is starting to roll over onto her stomach. She still can not sit or stand on her own because she has no balance but with our help - she likes to sit up and look around at all the things around her.

Ok, so I have tried to sum up the last 15 months of Torah's life. I know I did not get every detail, but this is the majority of it all. If you ever have any questions - please ask. We go back to Denver in June for more test and hopefully the Doctor that is in charge of her at TCH will have come up with a diagnosis or syndrome for Torah - so that we might know what we have in store for us down the road.

Made it through another month

Okay, so it is not the end of the month yet - but close enough. Torah is doing really well. We just saw her development doctor in Casper on Tuesday. Torah weighs in at 21 lb 3 oz and is still 31 inches long. She is really trying to hold her head up a lot now and when ever you put her on the floor on her back, if you come back later she has rolled over. I think she likes rolling over because she is always trying to get onto her belly. I am currently trying to give her some foods by mouth - but she does not seem to be too interested yet, but I will stick with it and hopefully one day she will realize that she needs to start eating by mouth. We have even started working with a sippy cup since she does not like bottles anymore. Lets just say that between teaching Torah how to eat and also trying to potty train Jace . . . mama is a little stressed out. Bob and I are also in the market for another place to live. Hopefully in the next month or so we will have found something and can start making the arrangements to move (again!).
Myself and the kids will be heading for Kansas the evening of the 18th of June (after we are done with all of Torah's appointments in Denver at The Children's Hospital). We will be in Oklahoma for a couple days but I plan on sticking around for part of the next week (since Bob is working anyway) and that will give me some time to hopefully see everyone.
Thanks again for all your thoughts and prayers for Torah. I appreciate all the comments that have been made, they really help me along sometimes when I need that extra boost.