A belated Happy New Year to all of you! I apologize that it's been a while since I posted anything. In the last week or so a lot of people have been asking how Lizzie has been doing. Thanks for checking on her, everyone! I guess it's time for an update!
Lizzie started rolling over from back to front just a few days before Christmas. Not only did she learn how to roll over, but she quickly figured out that rolling could be a means of transportation. Several times she even rolled herself under the Christmas tree!
A few weeks ago, Lizzie had an ear infection. She was at the pediatrician on January 7th and weighed 15 lb, 2 oz, which means she put on exactly 2 lb in one month! She's definitely putting on weight well! Dr. C prescribed her an antibiotic for the ear infection and it seems to have cleared up.
Lizzie has been trying lots of new foods. She loves oatmeal and bananas, but she's also had squash, carrots, and applesauce. Squash was not a big success, and the carrots and applesauce were so-so. We just tried pears tonight, and I wasn't surprised when she seemed to think they were pretty tasty.
Lizzie had an appointment with her neurologist on January 16th. Going into the appointment, we wanted to ask about Lizzie’s development. We haven’t seen a lot of serious delays, but there have been some little things we've noticed. For example, she didn't roll over until she was almost 7 months old. Now, she's almost 8 months old and still doesn't sit up very well when unsupported. Overall, her movements seem less coordinated than we remember in babies of this age; they seem more like the movements of a younger baby. We've also noticed that she doesn't babble the way most babies do at this age. She coos and gurgles, but she doesn't make any of the repeated "ba-ba-ba" or "ma-ma-ma" types of noises. We told Dr. K about what we've been seeing, but he didn't seem surprised or concerned.
The nurse weighed and measured Lizzie when we first got there. She's 15 lb, 15 oz, which puts her at the 22nd percentile! Dr. K said that Lizzie looks pretty good. She tracks things with her eyes, makes eye contact, passes toys from one hand to the other, smiles, and coos—all things that they want her to be able to do. He said that she has good head control and good muscle tone. He said that it’s very unusual for a baby to be doing so well in such a short span of time from the EEGs that looked so serious (in September).
Dr. K said that her most recent EEG, which was in October, showed a lot of improvement from the previous ones she had during her hospitalization in September. He attributed this to the anti-seizure medication doing a good job of controlling the seizures. He did say that the EEG showed slower brain activity on the right side of her brain. We asked what that meant, and he told us it meant that the right side of her brain is not functioning as well as the left side. He said this would result in some developmental delays, which he pointed out we we were already noticing. However, Dr. K said the positive thing is that even though Lizzie is a little behind most babies her age, she is still making progress. He said that doctors get concerned when a neurology patient plateaus for a long time or regresses. The fact that Lizzie is still making gains is a very good sign.
Dr. K would like to run a test for pyridoxine-dependent epilepsy. It's very rare, but because Lizzie's been doing so well on the combination of medications she's on, which includes pyridoxine, he would like to do the test. Luckily, they didn't have to draw any blood because they still had some "on file" from her hospitalization. It will be at least 6-8 weeks before we hear any results on that test.
Dr. K would also like to run a genetic test on Tom and I. One of Lizzie's genetic tests came back showing a benign variant on one of her genes. Dr. K said that a benign variant would most likely not cause her epilepsy. However, there's a lot they don't know, and if they test Tom and I and find out that neither one of us carries the same benign variant, it means that somewhere along the way Lizzie's gene had a mutation, and then they would look at that more closely as a possible cause of her seizures. Dr. K's office is going to find out if our insurance will cover that test and get back to us.
Dr. K will tentatively plan to run another MRI on Lizzie in about a year. She had one while she was hospitalized in September, and they said it looked normal. Even so, Dr. K said that the brains of infants sometimes do not show abnormalities very clearly on an MRI, and one possible reason for the slower brain activity on the right side of her brain might be due to a structural abnormality or a lesion. By waiting until she's a little older, they should be able to get a clearer picture, and if there is something there, they should be able to see it better at that time.
So. We got some questions answered and now we have more, so the waiting game continues. Overall, it was a really positive visit. It's good to know that her neurologist thinks she's doing so well!
Lizzie has been practicing sitting up. She doesn't have a lot of strength in her trunk yet, so she doesn't stay upright for long. She'll sit for a minute and then she kind of folds herself over forward so she's touching her toes. Her OT came to see her on January 17th and gave us some more ideas for working on her core strength, so we've been using those some. When Lizzie lies flat on her tummy, she frequently pushes herself backwards with her arms. In just the last few days, she's been pushing herself up onto her hands and knees and rocking back and forth, so she may be crawling before too long. Her OT comes again on Monday, so we'll see if she has any thoughts on that.
I talked to Nutrition at Children's Mercy to see if we needed to continue adding the formula to the pumped breastmilk she gets, and they said that because she's gained weight so well since they last saw her in November, we don't need to continue adding the formula. We will schedule a follow-up appointment with them so they can check her again and make sure she's continuing to gain well.
Right now Lizzie is doing so much better than we thought she might be based on what the doctors were telling us back in September. We want to thank everyone again for your prayers and kind words. We appreciate all of you who ask about her and tell us that she's still in your prayers. We will continue to keep you posted as we learn more, or if things change.
