December 3- Changes and Frustration!

(I hope this makes sense as it is very late and I am very tired!!)

We hope everyone had a great Thanksgiving! Our was very low-key and we were very happy about it! We were so thankful to have our entire family home together as we spent last Thanksgiving in the hospital with Lexi. We were able to put up a Christmas tree this year and even bake some cookies with the twins. We tried to stop and thank God for the many blessings- big and small that we have experienced this year. In spite of the obstacles we have also faced, WE ARE THANKFUL for a beautiful baby girl that has made it through a difficult year!

Many of you that follow the blog are probably wondering how eye surgery went. It didn't happen! We went to the Clinic for pre-op, got clearance from cardiology, basically all the "red tape" stuff. 4 days before surgery, the opthomologist office called and said they are postponing her eye surgery until she can see the neuro-surgeon. The opthomologist strongly feels the Lexi needs brain surgery and that her chairi malformation is what is causing her eyes to turn in. The earliest we can get in to nuero is January 11th becaused the Dr is gone for 3 weeks in December. So, we wait.

We saw our local hospital pediatrician this week, however, and he really feels Lexi's eyes need fixed now as they have become more cross-eyed and he is concerned her vision will be affected. He is recommending we take her to the opthomology department at Cincinnati Children's Hospital. If we wait for Cleveland Clinic, it will most likely be March before we can get her back in. We are PRAYING that the neuro-surgeon decides against brain surgery and would much prefer Lexi to just have a much more simple eye procedure done instead. We are confused and frustrating and in need of some guidance!

We made the 1st of our weekly December trips today. We saw an allergist and we're glad we did! We found out the Lexi is allergic to milk and eggs (poor baby- what else can she have??). So, they will be moving her to a soy-based diet immediately. We then had lab work done for endocrinology (to check her thyroid issues) and more tests for allergy. They are looking into how severe her allergies are and are also checking her liver. Lexi scratches herself to the point of drawing blood and they are trying to get to the bottom of this. We have also been asked to bathe her with special lotions and put a more potent lotion on her daily. We have deemed Lexi our "diva" as this lotion cost $6 an ounce! The cheap Johnson and Johnson just isn't good enough for the little princess (but she's worth it!).

Finally, we had another session with the eating clinic. They did an oral-motor- evaluation on her today. Lexi has very low tone in her face. Her bottom lip is too loose and her top lip is too tight. This both are issues in feeding. I asked them to be up-front with me about our game plan and Lexi's prognosis. The difficult thing is that no one knows if Lexi will fully recover from her facial nerve damage. At this point, they said it will be "a very long time" before she is able to eat completely on her own without the G-tube. The best thing we can do is oral stretches and try to get her to become consistent and not develop food aversions. The good news, however, is that she gained the appropriate amount of weight for the first time ever!! Yeah!! She is a whopping 17lbs 10 oz!

Prayer Requests:
Please pray for wisdom for Jon and I as we decide what to do about Lexi's eye surgery. Do we get a 2nd opinion and add another hospital and another doctor to the mix?? Pray that the 3 doctors- neurology (very against brain surgery), opthomology (strongly pushing for brain surgery) and neuro-surgery (yet to really weigh in) can all agree on the best treatment for Lexi.

Pray for me, Lexi, and my various family members as we make weekly trips to Cleveland. We go 6 times from now until January 11th. Pray for safe travel as the snow begins in Cleveland! Next week, we will see the feeding clinic, ENT (ear,nose and throat) and a neuro-sleep doctor to begin the process for her 24 hour PH probe and sleep study.

Thank you all for your continued prayers. It is a long and exhausting road with Lexi but her sweet little smiles and adorable personality make it all worth it!