Tuesday, July 22, 2003

Jenelle saw Dr. Phillips today for her follow up after the MRI. While we were hoping for some further explanation about the MRI results, and maybe some more answers, Brett and I left feeling more confused than we were before we got there.

The really great news (that we already knew) was that Jenelle's MRI was normal. While that doesn't explain the cause of her delays, it does answer a lot of questions to the neurologist, and rules out a lot of really bad things. Among the many things, we have ruled out stroke, brain damage, cerebral palsy and brain tumor. We realize that we are very fortunate to have such a great result. Dr. Phillips talked a long time with us about "further testing" and where we go from here. He believes there are a few more tests we can do to rule some other things out, but that Jenelle's situation might be a case where we may never find a "diagnosis". Also, at this point, any "diagnosis" is something that doesn't really have a cure, so we should continue as we are with the therapy as that is really the only thing that is helping. Nothing indicates that Jenelle's condition is life threatening.

Dr. Phillips explained that we should treat Jenelle like a "normal" child, and that she will be able to do "what we expect" of her. So, if we carry her around, and treat her like a child that belongs in a wheelchair, she will be a child in a wheelchair, and so on. He also said Jenelle was "going to be who she was going to be", which really didn't make much sense to us. I'm not sure if he was trying to give us a dose of reality, or trying to sugar coat the situation, but it was obvious he was trying to say that we may never know exactly what is "wrong" with Jenelle. Brett and I are fine with that, but we do understand how some parents feel in this situation, and how it would be better if we had a "name" for what is "wrong" with Jenelle. We want to do some more tests, but how far we will eventually go in that process we do not know at this time. We know that we are fortunate that Jenelle is happy, healthy, and very loved.

Dr. Phillips is going to run some more tests including genetic and metabolic tests to further rule out other possibilities. He is also testing for Prader Willi Syndrome, a specific chromosomal disorder that effects the hypothalamus in the brain. He told us not to research it or worry about it (yeah, right) as it was just something he wants to rule out. They had to take blood and urine for the tests, and that was quite an ordeal that took all day. For her blood test, they had to poke her twice (tough to find a vein on her chubby arms), and took 7 small viles of blood. She was such a trooper, and handled it well without any anesthesia. Obtaining the urine sample was another difficult task in that they had to apply a "bag" to her and hope that it would catch her urine in her diaper(I would assume this is easier for little boys.) When I brought in her first sample, it wasn't enough, so we had to wait another couple of hours to get some more. Eventually we got enough for the lab - but it wasn't easy trying to make a 9 month old "pee" on command!

Jenelle's next appointment with the Neurologist is in 4 months (November). Jenelle is really doing well in her physical therapy, and may be starting occupational therapy in the next few weeks. That is encouraging!

Tuesday, July 08, 2003

Brett spoke on the phone to Dr. Phillips today regarding Jenelle's MRI results. Jenelle's MRI was"normal", but it still leaves us with many questions about her delays. The good news with this is that we can rule out any brain tumor or other significant problem. I'm sure we'll get more details from Dr. Phillips at our next appointment on July 22, 2003.

Later, Jenelle saw Dr. Florencio Ching for her initial Opthamology appointment. She was such a good girl during the exam and only fussed once when he had to put drops in her eyes to dilate them. Dr. Ching examined her vision and said that she appears to be farsighted. Upon examining her eyes after being dilated, he said everything was normal, and that the optic nerve and retna were attached.

Dr. Ching felt that Jenelle's vision is "developmentally delayed" - it should be better for her age, but at this point, her vision is still in the development stages, so it is a little early to diagnose a problem, if any. He reviewed her MRI report and said there was nothing there to indicate a vision problem.
Dr. Ching will see Jenelle again in 4 months to assess her vision at that point. Overall today we've received good news, but also we still have a lot of questions unanswered.

Tuesday, July 01, 2003

Jenelle had her MRI today. It was a very long day, but overall she tolerated it very well, and she was just perfect! Though Jenelle was a trooper, the day wasn't flawless. I'm a firm believer that the many prayers and positive thoughts everyone has been giving Jenelle helped our luck today.

The whole event started the night before when I tried to keep Jenelle awake as long as possible, and fed her a large meal at around 10:30 p.m. The pre-op instructions said that she could not have any "solids" after 3:30 a.m., and nothing at all after 7:30 a.m. I put her to bed at 11:00 p.m., and woke up at 3:00 a.m. to give her a bottle of formula. My goal in keeping her up that late was so that she would sleep most of the morning time when we couldn't feed her. It worked like a charm. I also woke her up at 7:00 a.m., and gave her a few ounces of pear juice - she was so sleepy, she didn't even take the whole bottle.

We arrived at St. Joseph Outpatient Pavilion and checked in at 9:30. Jenelle's MRI was scheduled for 11:00 a.m., but for whatever reason, we had to be there at 9:30. She was starting to wake when I approached the front desk at 11:00 to find out what was keeping them from calling her back. Apparently our room had been given to another child in need, and we were next on the list. Soon we were taken back to another waiting area to wait for a nurse to come out to give us some details. As this small waiting room began to fill up with other patients that were waiting behind us, we realized something was wrong. Soon the nurse came out to tell us that the MRI machine was broken, but that they had a repair person there who could hopefully fix it. Jenelle was awake at this point, but not fussy, so we opted to wait a little longer.

Another half hour later, the nurse came out to tell us that they were still working on the machine. At this point we asked her to look into what appointment times we could get if we rescheduled. The two other patients behind us were older (ages 3 and I think around 7), but they too were getting hungry. Another half hour and the nurse came to tell us the machine needed another repair person, and we would have to reschedule. At this point, even if the machine were fixed, we lost the anesthesiologist for the day. The nurse went back into the room again to get the schedule, and then returned to tell us they had an opening across the street at St. Joseph's Hospital, and they would take Jenelle and one other patient immediately. What a relief!

We then walked across the street to the hospital, and they took Jenelle into the pre-op room to prepare her for the anesthesia. We gave them some history, changed her into a gown, signed information forms for both Brett and I, and then took off all of our metal jewelry - apparently the MRI uses magnetics, and you can't have any metal on at all, or it might come flying off. The Anesthesiologist spoke with us briefly about the procedure, and said we could be with her when he used a gas mask to put her to sleep, but that we had to leave as they administered her IV. The IV was necessary not for anesthesia, but to pump diagnostic fluid into her so that her vascular system would show up on the MRI. We were told this was an important tool when searching for tumors. He also warned me that with her chubby arms and legs, it might be difficult to find a vein.

I held Jenelle as we walked her into the room and placed her onto the MRI machine. The doctor held a mask over her face, and she tried to wiggle away, but eventually she fell asleep with her eyes partially open. Brett and I then left to wait for the doctor to get us once the MRI was complete. After about 40 minutes, we were taken to the recovery area, where Jenelle was alert and cranky. The anesthesiologist told me to hold her because her smelling me and feeling me so close would help her to calm down. They told us the anesthesia would make her cranky for about a half hour, but then she would settle down and be sleepy the rest of the day. I gave her a bottle and once they removed her IV, she was calm and no longer crying. I asked the doctor if they had a difficult time trying to find her vein, and he just smiled and said, "yes"... apparently, from the marks on her arms and legs, it took about 5 pokes to finally find a vein. Fortunately this was done after she was asleep. Once she was released, we took her home and she ate again 2 hours later and went to bed early that evening. I expected her to wake up that night, but she slept though the night and into the late morning the next day.