Monday, August 17th- Trying to be flexible!

The cardiology department called today. They feel it is important that they also do an MRI on Lexi. There is some concern about her blood vessels around her heart being too narrow. This can be very dangerous and even fatal. However, the cardiac MRI is 2 hours, along with the brain MRI, that makes it a 3 hour test. The cardiac anesthesiologist only wants to put Lexi under once. So, after phone calls with cardiology, neurology, and opthomology, the doctors feel it best that we wait and schedule both MRIs for September 1st (the 1st available for such a lengthy test). The time is set for 7am!! (This means another stay in Cleveland- we're going to check into the Ronald McDonald house!). So, we will not have any more news (we hope!) until after the 1st. We knew people would be praying and checking up tomorrow so we wanted to let you all know! With Lexi's 2 aortic narrowings, it is definitely better to be safe then rush into things!

Thank you for your continue prayers! Pray that Lexi's vision is not too affected the next 2 weeks as we wait for the MRI.

Wednsday, August 12- update on MRI

This will be brief, but we wanted to let everyone know that our wonderful neurologist (and we mean it!) managed to talk the radiologist into double-booking an MRI for Lexi! We see our family doctor on Monday for her physical. We have the Ok from the cardiologist to proceed, so, it looks like we're set for 10am next Tuesday! So, she has a sedated MRI next Tuesday. Typically, MRI's really aren't that big of a deal, but, because of Lexi's age, size and cardiac history, she will be going under full anesthesia and most likely be put on a ventilator again. In addition, they warned us that they may have to admit her following the MRI because of her past history in order to carefully monitor her coming out of anesthesia. She did well on her EMG, so we're hoping just a few hours in recovery will be all she needs and we can avoid another hospital stay- even a short one!

Please pray that Lexi's MRI goes well and that the doctors get a clear picture as to what is happening. Lexi right eye is pretty severe and we are very concerned!
Please also pray that the anesthesia goes well and Lexi is able to come home on the same day!

We'll post again next week after the MRI! They will have the results back in 24 hours after the scan!

August 10, 2009- Follow-up from neurology

We saw a neurologist today. We actually saw 2 as the first doctor wanted to get a second opinion as Lexi's "symptoms" are extremely unusual. Our neurologist was on vacation, but it was good to get two new perspectives. The neurologist think that there is an issue with Lexi's brainstem and sending correct responses to her eyes. This would be related to the cranial damage she had following her heart surgery. They "mystery" is why this is just now coming up. That is why there is so much concern. They want to do an MRI as soon as possible. However, the first available isn't until September 1st. The neurologist do not feel this is soon enough so they are going to make some calls tomorrow and work her in. The difficult thing is that Lexi has to be sedated so they have to involve a pediatric anesthesiologist that specializes in cardiac. The neurologist today think that Lexi has some neuron damage on her brainstem from lack of oxygen or blood supply during surgery. Hopefully, this will be shown in the MRI. Otherwise, it's a "guess" and we will go back to Opthomology to look into eye surgery in the next few weeks.

Please pray that we are able to get Lexi worked in sooner for her MRI!! Thank you all for your concern!

Sunday, August 9,2009- Busy week!

We have had a very busy week this past week for Alexis! Let me explain:
Alexis' has been having some issues with her eyes turning inward. We noticed it about 3 weeks ago but thought it may be just a phase. This past week her therapists and my sister, Holly, commented on it. We took her to see the pediatrician at Blanchard Valley Hospital and he said it is definitely of concern. So, off we went for our 2nd trip to Cleveland this past week. On Monday, we went to see GI and ENT. Thursday, we saw Opthomology. The opthomologist are also concerned as to what is causing her eyes to turn in so quickly. In addition, it quickly affects infant's vision as it is still developing. The good news is that it is not her optic nerve (cranial nerve 3), which means there is no immediate danger to Lexi's vision. The opthomologist are pretty sure it is due to her cranial nerve damage- this would be cranial nerve 6. So now, we have been worked into see her neurologist on Monday (tomorrow). The neurologist plan to do a full neurological exam Monday, most likely followed by an MRI sometime this week. If things do not progress in the next 3-4 weeks, they will be scheduling her for eye surgery. Obviously, Lexi does not need any more "strikes" against her. Please pray that the neurological exam goes well on Monday and this is only a very temporary issue from her nerve damage.

Lexi's therapies are going well but her progress remains slow. Her vision troubles are definitely of concern to the therapist as vision drives a lot of physical milestones. We are still working with Lexi on grasping toys with her hands, eating and now are starting to work on her sitting up. The best news is that Lexi is now giving some pretty big smiles on a regular basis (especially for her mommy!) The GI doctor on Monday is still concerned about her size, so they have increased her calories via formula. Lexi gaining weight more quickly will also hopefully help with her physical milestones.

Please pray for traveling as we make our 3rd trip to Cleveland in a week. Lexi usually only lasts about 1 hour in her car seat. Pray that she remains peaceful and patient.
Pray the Lexi's exam goes well tomorrow and that, regardless of the outcome, the doctors can find out exactly what is causing this sudden vision problem.

We will try to post some information later this week after we meet with neurology.