Nora's first time sitting in the grass..she was not a fan!
I keep putting off writing an update because I keep hoping that *THIS* week we will know more. "I'm hoping to know more by the end of this week" I think I've been saying that for the last 9 months. But we finally have some plans! (although plans can change in an instant;-)
As always, this may not be completely coherent, and I may be leaving things out-feel free to correct or ask questions:)
At the time of the last post, things were pretty scary. We kept going back and forth as to what we should do. We had really wanted to try the diet, but things weren't coming together quickly enough. We sent Nora's info to a Dr in NYC (who has dealt a lot with this kind of issue) and were waiting to hear back from him, but it was taking a while. We felt like we needed to start something, so we decided to put Nora on Sirolimus for now. When I told the ENT we were going to start, she was so happy-she gave me a huge hug and couldn't stop smiling. She said she had been so worried about Nora and thought this was a good decision. Her reaction was helpful for me, because I wasn't very excited to put Nora on it. It has been 3 weeks since she started, and so far she is tolerating it well. Last Thursday at her ENT apt, Nora's airway looked really good! (compared to before:) A HUGE answer to prayer. We had been going in weekly, but the ENT said she is comfortable waiting 4 weeks since Nora seems stable now. Her tongue is still looking good, and the mass on her face has gone down a little too, so it seems like this medication is doing something. We have decided that we are not going to do the diet for now, and have been talking with the doctor in NYC about starting surgery. I have talked with the parents of several other children with lymphatic malformations who see this doctor (Dr. Waner), and have heard and seen very promising things. Dr. Waner thinks that Nora could get her trach out someday! I'm not holding my breath, but I pray constantly that would be the case. And we feel like if any doctor could get her to that point, it would be him.
As of now, Nora is scheduled to have her first procedure the beginning of November. (When I started writing this earlier, it was scheduled for the end of Oct, but as we have experienced-things can change quickly and often:) We are really excited to get started. From what I understand, this first visit Dr. Waner will start by removing part of the mass under the chin, and also do some sclerotherapy and laser in the airway. I don't like the thought of my baby going under the knife, but I can't wait to get some of the weight off her face! And give her a better range of motion. We are so thankful for how well Nora has been doing developmentally despite everything. The extra weight doesn't seem to slow her down! There are some things she can't do as well, but for the most part she is right where she is supposed to be developmentally. She is now pulling herself up on things and starting to walk along the furniture-this girl likes to move! As much as I don't like mornings, I love looking over to her crib to see her standing there staring at me with a huge smile on her face:) Oh I love that girl. She loves being in on all the action with her crazy sisters. Her sisters adore her and the feeling is mutual. In the morning when Belle wakes up, she stumbles into the living room with a solemn/grumpy face until she sees Nora-then she lights up with a huge smile and says in her high-pitched baby voice, "HIIIIIII Nor-Nor!!!" To which Nora responds by happily waving her arms with an enormous smile on her face:) Lina is like a little mother to Nora and wants to do everything for her (she would change the #2 diapers if I would let her:) We have even let her suction Nora a few times (with very close supervision!) I think a career in nursing is in her future. Although she doesn't do well when Nora throws up-but who likes that? Anyway, getting off-topic...to summarize, Nora is doing well at the moment and we are hopefully going to New York to start treatment soon!
"Thank you" is so inadequate, but it's all my mush of a mind can come up with, so-thank you to all of you that are so faithfully praying for Nora. We can see God answering our prayers! Please continue to pray for healing for Nora and protection from illness. She had some respiratory/breathing issues a couple weeks ago that had us in the ER for a bit, but she seems to be done with that. With the older girls, I would let them play with kids with green snotty noses and wasn't too concerned if they were sucking on the shopping cart or chewing on shoes-they never got sick! I can count the number of times they've been to the doctor (besides regular check-ups) on one hand. With Nora, I have to be really careful since she is more susceptible to things because of her trach, and now even more so with the medication she is on. So prayer for health is appreciated!
Please also pray for this first NY trip. Like I said before, I've been in contact with a few moms who have made these trips many times already-I am so grateful for their input! Please pray that insurance would cover things and that everything would come together smoothly. Flying with a baby Nora's age is not so fun, and add in all the extra things we will be hauling-it will be interesting! One good thing about Nora not being able to make noise is that if she screams on the airplane, no one will be bothered:)
Before I end, I need to thank our secret santa-whoever you are. We have received several anonymous envelopes with very generous gifts inside. One day we were driving home and talking about a stressful issue. The girls asked to turn some music on, and the first song that just *happened* to come on said, "Don't worry about anything, instead, pray about everything. Tell God what you need, and thank Him for all He has done" (Philippians 4:6) Such a timely reminder! When we got home, the first envelope was in the mailbox:) Whoever you are, I hope you read this-we just want you to know what blessing and encouragement you have been!
Nora is our little Supergirl:)
