Avleigh's Journey

I’m very overdue on giving everyone an update on Avleigh. We have had a very rough few months and I’ve been trying to wait to give a full update until I knew a little more of what was going on. So where do I begin… About 4 months ago Avleigh was doing really well recovering nicely from her hip surgery when all of a sudden she began having more feeding issues. Her reflux increased dramatically and she began losing interest in her blended foods. To make sure she was receiving her proper calories, we had to begin giving her bolus feeds. This is where we would put formula in a large syringe and allow gravity to pull it into her stomach through her tube. We eventually got to a point to where she began gagging when we tried to feed her leaving her to only receive these bolus feeds. This was all good for a few weeks. She then was unable to tolerate her formula. She was vomiting often and losing weight. We switched her to a formula that is already broken down in effort make her stomach’s job a little easier, got her a pump where she could be on continuous feeds 12 hours a day and increased her reflux medicine. My poor child that used to be able to eat as much as me by mouth, chew and swallow like a champ now can’t tolerate any more than 2 ounces over the period of an hour. In addition to this, her reflux is still on a rampage. She not only is beginning to have trouble with the reflux itself, but also her own secretions. She very often chokes and has minor aspiration.

Through all of this we’ve spoken to three different GI specialists. They all have the same concerns with the largest being aspiration. They also all agree that there is nothing that any of them can do to correct this. There’s meds for reflux to take the acid out, but nothing we can do to get the stomach to start working properly again. We are scheduled for a motility test in December. Although this will not give us any help with her GI issues, it could give us information to help us in making decisions on her behalf. With all of this we have several options: The most invasive option is Nissen surgery. This is a surgery that corrects reflux. It would take the upper part of her stomach and wrap it around the lower part of her esophagus so that her reflux is not able to come up. The less invasive option is to change her button from a G-tube that goes to her stomach to a GJ-tube that will allow us to feed and administer meds directly to her small intestines and vent her stomach to relieve any gas. The down end of both options is they both will help with reflux, but we will always have the issue of aspiration from her saliva. For once a decision was very easy for me. This child has been through so much in this past year that I feel as if the less invasive option is the best option for us to begin with. So we are now awaiting for her new GJ button to come in and an appointment to be scheduled with radiology to have the new button placed.

On the other hand, we’ve also been watching her seizure activity very closely. When all her GI issues went haywire so did her seizures. She didn’t have any major ones but the small absent ones began happening more and more often. We increased her seizure meds and immediately seen improvement. As follow-up her neurologist ordered labs, a 24-hour EEG and a repeat MRI. The labs identified a few areas of concern. The most alarming was her B12 levels were extremely elevated. Now B12 isn’t toxic but the body is designed to rid of any excess B12 through the urine. To be safe, we were referred to HemeOnc as these elevated levels are often seen with blood disorders, liver or kidney failure. While in the office with HemeOnc she explained all the areas that she would test for that could cause such high levels. Since Avleigh is such a hard stick, we are still awaiting these test results since they just got all the labs fulfilled last week. The other things that happened last week was the 24-hour EEG and MRI. The EEG results were abnormal. This is no surprise as we know she’s having seizures, but it also tells us that she needs her seizure medicine. Her neurologist is the one doctor that will focus each and every appointment on making sure she’s LIVING life. He said that what’s the point of living if you don’t live. So with that we will keep her seizure medicine where it is in efforts to keep her alert and focused… quality over quantity. And lastly, the item that I was most nervous about… the MRI. Those results came back with not much change from two years ago! Her cerebellum still has some thinning in the folds but it’s still full! And the pons appears to be of normal form. This is amazing news for a child with PCH!

I’m very sorry for taking so long to update everyone on her journey. All this information in short turned out in a very positive manner, so far, but the ride itself has been an emotional roller coaster. Thank you to all my friends and family for the continued support through all of this. I truly couldn’t do it without all of you!