Wednesday, April 21st- How many "opinions" can you have?

Many have been asking how things are going with Lexi and what the nuerosurgeon from Toledo said on Friday. And so- it's time for an update!

We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.

We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)

Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.

We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!

April 7-More opinions and more surgery

Lexi was released from the hospital on March 18th. She was in for 4 days total. She has been on breathing treatments 1-2 times a day since she has been home. We will continue these through the end of RSV season, which will be the end of April. The doctors also said that with her "compromised lungs" she will most likely need breathing treatments any time she even gets a cold for the next year! I didn't realize RSV and pneumonia can have such a lasting effect!

Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!

We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).

Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!

Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!

We'll post more after Lexi's April 16th appointment!