Monday, October 19- Exhausted!

We had an extremely exhausting week last week! I feel like we are just now beginning to recover. My parents and I spent 2 days in Cleveland this past Tuesday and Wednesday. On Tuesday, we left the house at 6am for our first appointment at 9am. Here is a brief synopsis of all of Lexi's appointments and the MANY tests/surgeries that will be happening in the next few months:

Opthomology- Lexi's eyes are still significantly turned in. The Opthomologist is insistent that this is related to her chiari malformation. He is highly recommending we see nuero-surgery personally. However, since no brain operation is planned in the near future, Dr. Rychwalski, the opthomologist, will be doing corrective eye surgery for Lexi on Monday, November 23rd. We have a few pre-op appointments prior to surgery as Lexi has to get "clearance" from several departments before surgery. She will hopefully only be in the hospital for one day and then "uncomfortable" at home for 2-3 weeks with swollen/bloody eyes.



Cardiology- this was actually our easiest appointment. Lexi had an EKG and echocardiogram and did great for both of these! We also saw the cardiologist who said her 2 narrowings are still "moderate" and there are no surgeries needed in the near future. We will see cardiology again in 3 months. The most ironic thing, however, is that the thing that started this- Lexi's heart- is the least of our concerns now!



Dietician- Lexi if FINALLY gaining the right amount of weight. The dietician spent some time trying to recalculate her formula again to make sure she's gaining the right grams per day. They have significantly increased her caloric intake and Lexi has finally reached 17lbs! The dietician is also having Lexi see an allergist as they are concerned she might have some food allergies and a milk allergy.



Swallow Study- on Wednesday morning, Lexi had a swallow study. She, as our luck has it, woke up vomiting on Wednesday morning. So, her swallow study didn't go exceptionally well. She accomplished 7 swallows of thin liquids and, although she did not aspirate, they felt this was too limited of a study to give any further recommendations. From what the speech pathologist did see, she did not feel there was any improvement in Lexi's swallowing from 6 months ago.



Feeding Clinic- we then had a 3 hour session at the feeding clinic. We were extremely impressed with the thoroughness and level of professionalism! We met with a developmental pediatrician who said Lexi is a very "floppy" baby (but super cute!!). We then met with a clinical psychologist that runs the clinic, another dietician and an Occupational Therapist that specializes in feeding. They "interviewed" me for about an hour and then watched a feeding session with Lexi behind a 2-way mirror. After the feeding session, we met back again. The results- they feel that Lexi has "no clue" when it comes to eating. Her cranial nerve damage has had significant impact on her eating skills. And, the longer she goes without being able to eat orally, the more severe this will become. Lexi is also starting to develop some behavior aversions to eating. This is also a huge concern with the clinic. The clinic has never seen a child with Lexi's "condition" so this will be a trial and error treatment. They would like to see Lexi every one to two weeks!!! While this is a HUGE task for our family to take on, we really feel like it is what is best for Lexi. The Cleveland Clinic feeding clinic is one of very few clinics that specialize in feeding. So, we will do what Lexi needs to get better!



GI- after our lengthy feeding clinic, we finished up with GI. This was another intense appointment. The feeding clinic feels that Lexi has some additional GI issues, especially her reflux. So, they sent a staff memo to Dr. Mohr, the GI doctor, asking that she get very serious and aggressive with Lexi's GI issues. Unfortunately, they have done everything they can with medicine to treat Lexi's reflux, so the only other options would be surgery. However, they want to be sure they have "figured out" Lexi's issues before proceeding with any type of surgery. So, they are doing the following:

Lexi will be seeing another neurologist and we will be doing a sleep study. During the study, they will put a small probe down her stomach to watch her reflux and see how her stomach empties during sleep. We will be at the clinic for 24 hours for this.

Lexi will be having an "emptying" procedure done on November 17th where they will fill her stomach and then watch how it empties for 1 hour. This will help them know that everything is heading the right direction and not coming back up her esophagus.

Finally, Lexi will be seeing the Airway Clinic. This clinic consists of a polmonologist, ENT and GI doctor. They will be sure that Lexi's airway is safe and there are no other underlying issues.



Whew! I told you it was a crazy 2 days! I know it may be more information that you want. However, many had asked how her appointments went and this is the most concise I can get!:-)



Prayer Requests:

Perhaps the most difficult outcome of these appointments is realizing that Lexi's condition is not going to get better any time soon (but we are STILL praying for that Miracle!). We know God CAN heal but it will be in His timing (which is the often the hardest part!). When we came home from the hospital, we were thinking it may be a year or so. Now that we are approaching a year, we are adding even more doctors, surgeries, etc. We are exhausted. Please pray for strength and extreme success in time management. I do 4 "side jobs" to help bring in extra money- I teach piano lessons, sell Tastefully Simple 2-4 nights a week, work at my dad's office 1 1/2 days a week, and direct Children of the Light on Sundays. This is becoming very difficult to manage. But, it keeps me home 3-4 days a week to take Lexi to all her appointments and spend time with the twins.



Pray for Lexi's upcoming appointments and eye surgery. Pray for wisdom for the doctors and "continuity of care" between the many departments that are working with Lexi at the Cleveland Clinic.