Friday, August 29, 2003

I spoke with Dr. Phillips today and he informed me that Jenelle's recent test results were normal. The tests included a study for metabolic disorders, a test for a chromosomal disorder called Praeder Willi Syndrome and a panel on her chromosomes for any abnormalities. Jenelle's chromosomes are a "46XX", which is normal for a female (would be XY if she was a boy! ;) This is really great news, we are so thankful, and yet, still no answers.

Also, on this day I scheduled Jenelle's ABR hearing exam for November 21, 2003. The hearing exam must be done while Jenelle is sedated, so again, like the MRI, there is a long wait. I spoke with the Audiologist yesterday, and she said we would have the results immediately after the exam, so that is encouraging.

They say to have a child with a disability is like going through the grieving process, because you "mourn the loss of the perfect child." Prior to getting the DNA test results, I really started to experience these emotions. Simple, everyday things like going to Babies R Us for formula, or going grocery shopping are a constant reminder that our 10 month old is not like other babies her age. I see parents with children "sitting" in the carts, pulling their parents hair, or tugging their arms, or pulling boxes off shelves - it is very depressing. For me personally during this time, I could be fine one minute, then crying the next. I will be happy while grocery shopping, and in tears when they ask if I want to "donate a dollar to Jerry's kids". It truly is a humbling experience. The news of the normal results is a great relief, but still we have a lot of questions. On a personal level for me, I have started to refer to Jenelle as a "special needs" child, which I feel may be a good sign that I'm learning to accept this challenge in life.

Thursday, August 14, 2003

Just prior to Jenelle's well baby visit, I spoke with another Mom from our daycare who is a speech therapist. She asked me if Jenelle was having seizures, and I answered quickly, "No". She then asked, "Do you know what an infant seizure looks like?"... "Uh, no!" She suggested that I call Dr. Phillip's office and ask them for things to look for in an infant seizure. I made the call, and they provided me with lots of information, and suggested I keep a diary of Jenelle's behavior for the doctor to review at our next visit. Sometimes you can find a pattern. I learned that an infant seizure is not what we typically think of in a seizure, like a Grand Mal seizure in an adult. An infant seizure can be very subtle, and sometimes can only be detected by a stare or sudden widening of the eyes. Some infant seizures can have a jerk or two, like they are off balance, or can even be a change in breathing. A child usually does not have a full Grand Mal seizure until they are a little older.

Over the next few days, I started to notice some of this behavior in Jenelle, especially during meals and in the mornings. I mentioned this behavior to Dr. Patel at her well baby visit, and she told me to ask Dr. Phillips for an EEG exam (I don't know the technical word for it, but it is an exam that monitors the brain waves for seizure activity.) That night, I emailed Dr. Phillips with a description of some of the behavior I saw in Jenelle, and he responded quickly that he wanted to order an EEG, and he thought it was a good thing to explore. He also suggested we try to video tape some of this behavior.

Whether or not Jenelle is having seizures, we are not sure, but hopefully this test will give us some answers one way or the other. So, once again, on to the insurance authorization waiting game!

Tuesday, August 12, 2003

Jenelle saw Dr. Patel today for her 9 month well baby check up. We just love Dr. Patel, because she has been so concerned, and so involved in helping us with Jenelle's issues. Jenelle is weighing in at 22 pounds, and 29 inches - still in the 90th percentile for her age, which is great!

Dr. Patel is putting in for 3 referrals for Jenelle. I told her about the Occupational Therapy evaluation and their concern with Jenelle's tongue tie. We are being referred to a surgeon so Jenelle can get the tongue tie clipped. Not sure what that involves, but I hear its very easy to do. Jenelle is also getting a referral to an audiologist for a hearing test as requested by OT as well. And the final referral for Jenelle is to a physical therapist named Tim Healey. We were given his name by a friend and Dr. Patel had nothing but great things to say about him. She felt if he was covered by the insurance, it would be worth a consultation. Dr. Patel was concerned that Jenelle was only getting an hour of Physical Therapy a week and felt she needed at least 2 hours, but perhaps when the OT kicks in, that will make a difference.

Many of you have suggested we check out Jenelle's immunizations - there have been reports that immunizations can cause some of the delays Jenelle is having. Without getting too technical, Dr. Patel assured us that her office has been using the proper immunizations for over a year, so Jenelle would not have been affected by the immunization mixture (thimizerol) causing these delays. Dr. Patel said that in an infant with development delays, the immunizations are more important in order to build up her immune system. There are some concerns with giving the MMR (measles, mumps and ruebella) shot to infants with development delays, and Dr. Patel felt that when Jenelle needs her MMR (at her 12 month visit) it may be wise and safe to public services to have it done as they can give Jenelle the MMR in a separate form, spaced out on her body rather than all at once in one location. Yes, technical sounding I know, but it does makes sense to me. Brett actually started laughing because Dr. Patel and I understood each other, and he said he didn't know what we were talking about! ;)

So, Jenelle is doing well. She is not too big for her age, and she is showing some improvement, which is hopeful. Please continue to keep us in your thoughts and prayers. That means so much to us right now.

Monday, August 04, 2003

Jenelle had her initial occupational therapy (OT) evaluation today with two therapist from The Children's Therapy Center. This evaluation was done so we could get authorization from Regional Center to start Jenelle on OT in addition to her Physical Therapy. OT is therapy for "fine" motor skills.

I'm so ashamed of myself. They asked me to fill out some paperwork, and here I am all ready to write down everything Jenelle "isn't" doing, and the first question on the form was "What are you child's strengths and qualities?" ... WOW, I guess I haven't been thinking in that perspective! It took a long time to think about it, but Jenelle does have strengths and qualities. She is an easy baby, sleeps well, adapts to any environment, and is improving with her physical therapy. She can suck her thumb with the best thumb suckers and is generally a very happy, content baby. And, she is very beautiful, though I'm sure I'm very biased.

Getting back to the evaluation - Jenelle qualifies for OT, not a big surprise there. One of the new things we discovered is that Jenelle has a very thick tongue, and very tight cheek muscles. This is not only going to cause a speech delay, but will inhibit her eating ability. They asked me to spoon feed Jenelle and watched her eat. She eats by using her tongue mostly, and does not use the chewing motions that most babies her age are learning. Jenelle has always been "tongue tied" (where the bottom part of the tongue is fully attached to the bottom of the mouth) and our pediatrician has been against having it cut. They recommended Jenelle have it cut as the tongue tie will only inhibit her ability to progress. Her 9 month well baby check is coming up, so we'll mention it at that time.

Oh yes, and the really great news to report is that Jenelle is finally rolling! She discovered and mastered the ability to roll from her tummy to her back, and sometimes rolls all the way across the room, only stopping when she gets caught on the corner of the couch or TV. I think she is enjoying this as a way to explore and discover her world. Brett and I have noticed that Jenelle's delays have been consistently 4 months behind the time when Jack started doing these things. We can only hope that pattern continues. She has also started to "swim around" on her tummy in an effort of what looks like the beginning stages of crawling. I'm sure that is a ways away, but its great to see such improvement. Physical Therapy is most likely the cause of this great improvement!