Friday, February 19th- 2 days in Cleveland

Note: this is a very lengthy post! I know some really like details while others just want the "big picture!" So, I've put a summary at the bottom!! We really appreciate your continued prayers and the many of you that often ask "how's Lexi doing?"

We made a trip to Cleveland yesterday and today. Lexi woke up Tuesday morning very ill. She has been running a temp and is unable to keep down any of her regular feeds (she can only keep down pedia-lyte). However, since this is the 3rd episode like this in in 3 weeks, we were concerned that it was not simply "a flu bug." 3 weeks ago when these "episodes" started, Lexi was taken to the ER and the pediatrician ran every test imaginable- blood tests, chest X-rays, urinalysis, etc and NOTHING was abnormal. We called the GI dept at Cleveland Clinic Tuesday and the Drs are concerned that the vomiting could be related to Lexi's chiari malformation.

Yesterday, we went to Cleveland Clinic to see the opthomologist for her post-op check-up. Lexi's eyes are healing well. She has a small cyst developing on her left eye because the stitches are irritation her cornea. If it does not go away by Monday, they will treat it with additional medication. We then saw a speech pathologist in hopes to get Lexi at least babbling as she only makes "vowel" sounds. However, the speech pathologist thinks that Lexi will take a very long time to be able to really communicate due to her facial nerve damage. We are going to start really focusing on comprehension with her at this point. Finally, we were able to see a GI doctor as well yesterday. They are doing a full lab work-up on Lexi to rule out any infections and/or metabolic issues. Next Wednesday, they will also do an upper GI study on her to make sure everything is emptying the right way (if things aren't going down and out the right way- they usually come back up!). Finally, the Dr put Lexi on a new medication due to concern that she has an "syndrome" called CVS- cyclic vomiting syndrome in which, usually due to migraines, you throw up continuously for a few days, get completely better for a time and then repeat!

We spoke with the neurosurgeon earlier this week and they have scheduled her brain surgery for March 24th :-( Due to her most recent symptoms, Lexi's neurologist requested to see her today. He spent over an hour with us and was able to show us her MRI results. The most difficult thing with Lexi is- are her symptoms related to her chiari or to her cranial nerve damage? The neurologist is really uncertain of what to do with Lexi. After an hour of discussion, we have decided to keep her surgery date for March 24th and keep a really close eye on her current symptoms. If they go away soon, and/or if GI can find a problem that can explain the vomiting, we may be able to put off surgery a little while longer and wait for Lexi to get a little bigger. However, if the vomiting does not go away, we will need to do surgery to eliminate pressure in the brain from her herniated brain stem.

SUMMARY:
Lexi's MRI results show some moderate crowding in her cerebellum, but the fluid flow around the brain is "acceptable." However, due to Lexi having a a significant chiari malformation, the neurosurgeon feels Lexi should have brain surgery, set for March 24th. Lexi has been very ill off and on the past 3 weeks and her doctors are concerned that her chiari is getting worse. The GI doctors are trying to rule out a GI issue first and we have more tests for this next week. However, if nothing GI related can be found and the vomiting, sleepless nights and fussiness continue, we will need to go through with brain surgery on the 24th.

Specific Prayer Requests:
Please pray for Lexi right now as she is very fussy (and pray for Jon and I as we deal with a sick baby!). Pray for comfort for her.

Pray that these vomiting episodes can be diagnosed. We are REALLY praying that they are NOT related to her chiari and we can avoid brain surgery for a little while longer. However, more importantly, we want Lexi to feel better and make more improvements- so whatever needs done, we will do it!

Finally, pray for wisdom for her team of Doctors and for Jon and I. Lexi is not a clear-cut situation due to her many medical "issues." Pray that we can sort through all of them and the God will give us peace and comfort as we deal with this VERY important decision.

We will know much more after her upper GI next week and once we see if these vomiting episodes continue. We travel to Cleveland Clinic next Wednesday and again Thursday so also pray for safe traveling!

Post eye-surgery, Feb 13th

We are home with Lexi! She did really well yesterday. We are constantly amazed at her strength and tolerance of all the poking and prodding she goes through! She's our little trooper! Lexi is very swollen and has bloody eyes, but surgery went well and there is a 70% success rate! The best news yesterday was that the MRI dept was running behind 2 hours- we were frustrated at 1st, but the opthomologist was literally sitting around waiting for Lexi to show up for her eye surgery. So, she was only sedated for about 6 hours instead of 8 or 9! (Blessings in disguise-we love it!) We will talk with the neurosurgeon about her MRI results later this coming week. We will know more about the success of her eye surgery in 3-4 weeks as her brain now has to "reset" to her new eye position. Please keep us in your prayers this week as Lexi is not to be out much because of her high risk for eye infections. Also, Lexi is supposed to do "resting activities" for a week- should be interesting with 3 littles ones! Thank you all foor your prayers. I can't begin to tell you how hard it is to hand your little baby over to a team of doctors and watch them "go to work" on her- it's perhaps the most difficult thing we've had to do! Your prayers give us the inner strength we need!

Tuesday, February 9th- Eye surgery!!

We received a call on Monday that Cleveland Clinic has moved Lexi's brain MRI and eye surgery up to Friday due to some scheduling issues. Due to the weather today and tomorrow, we will be cramming all of her pre-op appts in on Thursday afternoon in Cleveland. Jon and I will stay overnight with Lexi Thursday in Cleveland.
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.

Specific Prayer Requests:

Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.

Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!

Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!

Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!

We will give an update this weekend!