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.
