Elizabug had her appointment with the Spina Bifida clinic two weeks ago, and it was a tough appointment. Jeff and I feel that E Bug has shown major improvement from the last time we were there, but her health care providers didn't seem as enthusiastic about her improvement as we are. Three months ago, E couldn't even lift her head, and now she has total head control and can roll over onto her tummy. As a result of this, I expected the doctor and physical therapist to be the biggest cheerleaders ever and celebrate like crazy, but unfortunately they didn't. Plus, the PT wasn't that great because she noted that there wasn't much movement in E's legs; however, we've noticed a lot more movement lately and expect that she will continue to improve. Lastly, the nutritionist commented that E hadn't gained enough weight (despite me force feeding her all day long), and the doctor informed us we will need to "revisit catheterization discussions in the near future."
With all this "bad news," I had a minor meltdown after that appointment, but the next day I was much better. Once I wasn't so emotionally involved and could think about things objectively, I realized several things: 1) we saw a different PT than at the last appointment so she probably wasn't aware of how much E has improved, 2) E's legs continue to move more and more every day, 3) E is gaining weight and has finally reached the curves on the growth chart and 4) clearly the doctor isn't that worried about catheterization because E doesn't have to go back for a renal sonogram until July or a urodynamic study until October. (If they were really concerned, we feel like she would have these tests much sooner.) Can you tell I totally believe in the power of positive thinking?!? Prayers for improvement in all these areas would be greatly appreciated.
Sweet Baby E had to be hospitalized for croup right before Mother's Day. Poor thing had a couple of episodes of sleep apnea (where she fell asleep and stopped breathing), and it scared me to death. So we went to the ER in the middle of the night and they admitted her for 24 hours to make sure she was okay. She did great, looked oh-so fashionable in a tiny hospital gown and is all better now. In fact, she felt so much better after her discharge that we were able to go to the Hyatt Lost Pines in Bastrop for a wedding over Mother's Day weekend. E loved the lazy river - and I loved getting to see her in a bathing suit!
E also saw her regular pediatrician this past Tuesday, and she was the cheerleader I needed. She said E looks great! She was impressed that E can roll over and hold her own bottle. She was thrilled that E weighs 15 pounds and 2.5 ounces and is actually on the growth chart now. And she told me not to worry about all the other stuff because spina bifida care is not "one size fits all" and the doctors probably had a checklist of things they tell all parents. This made my day. Now we just need lots of prayers for tomorrow's MRI, neurosurgeon appointment and follow up appointment with the nutritionist. Please pray that all these appointments go well! I'm especially concerned with the MRI because E Bug does not like loud noises and is aware of things enough now to be scared. It's only five minutes long, but she may scream in terror the entire time.
In other exciting news, E has two teeth, and she looks adorable when she smiles. She has also been sleeping through the night for the last three weeks - FINALLY! In my opinion, the best news is that I have started to ween E. If you've spoken to me at all in the last few months, you know how much I despise nursing/pumping. (In fact, y'all are probably sick of hearing me go on and on about it.) Anyway, since E will no longer nurse (causing me to pump all the time) and it won't be possible for me to pump this summer with the boys' crazy camp schedules, we are weening. I will officially cease pumping on tomorrow when my rented pump is due back. Needless to say, I will be having a "post pumping party" tomorrow night. HOORAY!!! My only concern is that poor E doesn't get constipated (I don't think she will as we have been mixing half breast milk and half formula at each feeding for the last two weeks). Please pray for an easy and seamless transition to formula.
Tomorrow is a big day for our sweet girl, and we are hopeful for only positive results!!!! Wish us luck... I'll try to update my blog later this week.
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