This week

Monday, we saw Dr Wood for Lydia's re-check for her ear infection...both ears were clear of infection and fluid. Yeah! Yesterday, we saw Dr Lutfallah, the pediatric endocrinologist. She basically took a lot of info from me about Lydia's medical history and said that she would continue what Dr Wood had started with her with the thyroid medication. She switched it to a different brand, Levoxyl, because it is a pill that dissolves easily in only 1 ml of water. That may make it a little better for Lydia to take it. The pill she was taking before...I had to crush and mix with 5 ml of water...she would gag, choke, and reflux the entire time she was taking it. Hopefully, this new pill will solve those problems. My sister-in-law, Tiffany (Martin's sister), had done some research lately about thyroid problems in infants...and some symptoms that she saw made us optimistic that this might have been the cause of most of Lydia's problems. I asked both dr's about this, and I no longer am hopeful about that. Dr Wood said that Lydia's thyroid levels were checked at birth and at one month, and her levels were normal then. Her problems started pretty much at birth. Dr Lutfallah said that Lydia does not have hypothyroidism...she explained the difference....right now, I'm a little fuzzy about it. I also asked both dr's about the possibility of the Levothyroxine causing the spasms, and both thought that was not the case. Dr Lutfallah said that the thyroid med that she is taking is just replacing the hormone that the body normally produces itself, so it has no side effects. She said that there is a risk of side effects if babies are given too much, but there would also be other symptoms that Lydia does not exhibit...and her levels do not show that it is too much. She also said, as dr wood did, that this is relatively common in infants, and they usually have them take the meds until about 3 yrs. then they wean them off and test to be sure that levels are normal. She said that it is possible to wean them sooner, but the risks associated with the abnormal thyroid level are too great...mental retardation, hypotonia... She was concerned with the size of her fontanel, which Dr Superneau also noticed to be small. She said that as long as the sutures were still open, then her brain could grow as it would like...the risk is if the sutures were closing, then it would limit brain growth. I thought that was reason-enough to look into it, since we know that her brain growth has slowed. She called Dr Wood and he was going to check the results of the CT that she had in the hospital and talk to Dr Superneau to determine if another x-ray was necessary.

Although Lydia has still been pretty happy during her awake times, she has started her crying while she eats again. Yesterday, she did not eat well at all....taking 2-3 oz at each feeding, crying the entire time. I had tried to switch to the powder formula (because it is soo much cheaper), so I suspect that might have something to do with it...it is thinner, but has clumps and lots of air bubbles. I bought some more ready-to-feed formula last night....but, this morning she still cried a lot while she ate...though I did get her to finish almost 4 oz. She didn't get quite all of it at 30 minutes, since she was doing so much crying. I tried to add a little more oatmeal, since that usually seems to be the miracle cure each time she starts to reflux again...I didn't really see a change. I'll do some more experimenting the next time she eats. I don't really see her making the same reflux posture that she used to do, but it is definitely hurting her to eat. I just wish that I knew for sure what was causing the pain, so that I could try to stop it. Please keep her in your thoughts today. :)