Leeland Update

I only have a second to write so I don't have time for details. Leeland had an apneic episode at home Monday morning. He had another in the ER. They started seizure medication. It totally knocked him out. We got moved to a room and they hooked up EEG to monitor seizure activity. They said it would still show up as background noise on EEG. He was hooked up for almost 24 hours with no apneic episodes. The neurology team recommended he stay on seizure meds and then if he never had another episode then we would know they were seizures.  We weren't comfortable with that. We met with GI and they recommended he do a 24 hour PH probe through his nose and into his stomach. That got inserted this morning. Once we hear their findings, we will make a decision about how to proceed with seizure meds. We should be going home tomorrow. I'll try to fill in details when I can. Thank you for continuing to pray for Leeland, his doctors and us!

Here We Go Again

Leeland had two more apneic episodes this morning and we are in the ER waiting to be moved to the Special Care unit. I'll update when I can. Please pray for us

We're Home

We got sent home from the hospital yesterday afternoon, but not before they took three vials of blood from his head that they had to stick three different times.  They will be sending the blood off and some urine for additional genetic testing. As happy as I am to be home, I am struggling today. I had sort of convinced myself that the apneic episodes that started four months ago were just a fluke, and now that they've happened again I can't seem to shake the feeling of worrying all the time. At least in the hospital I was surrounded by Dr.'s and nurses. I guess it was giving me a false sense of peace.  I know I haven't really said too much about what happened last Friday, but while I had the bottle in Leeland's mouth is when he turned blue the first time.  His color came back very quickly. About five minutes later while I was walking around the house burping him, I felt him go limp and watched the color drain completely out of his face. His eyes were open but he was unresponsive. I tried throwing him over my knee in case he was choking, I ran outside with him, blew in his face and eventually began mouth to mouth. I've never been so scared in my life. I am having a hard time not reliving that moment over and over in my head and waiting for it to happen again. I guess the reason I am writing this is because as you pray for Leeland, please say a prayer for me too.  I know that God does not give me the spirit of fear, I just need a little convincing.

Wednesday Update

Thank you all for continuing to pray for Leeland. We have had so many phone calls, emails and texts. It is overwhelming. We are still in the hospital and VERY ready to go home.  We still don't have a definitive answer as to what caused his apneic episodes but we are getting more pieces to the puzzle. Here's the latest:
Reflux-he had an upper GI done yesterday and it did show his silent reflux, but his anatomy was all normal. We have added rice cereal to his bottle and it seems to be helping. We are also switching formulas to one that is more broken down. He will have a swallow study done today and that is really the last thing on the to do list.

MRI-we were on pins and needles yesterday waiting for the neurologist to come by.  They pulled the images up for us in our room and showed us where the left side of Leeland's cerebrum is slightly smaller than the right side. The right side of his cerebellum is slightly smaller than the left.  These two areas are connected and both control the right side of the body.  I could go into a lot more detail but clinically speaking his MRI was abnormal. The good news is developmentally Leeland is doing great.  He is a little behind on some milestones but we see progress every day. He does move his left arm more then his right arm but the important thing is that it does move. Both of his legs kick like crazy.  We can also tell that as his vision has improved so has his development. They know that Leeland was born this way and it was either caused by some sort of infectious disease or something genetic.  Because his brain is the way it is, he is more  susceptible to seizures and some other complications. Because he didn't have any seizures while hooked up to the EEG, they have no way of knowing if that is what causes his episodes. From here it is a wait and see approach. The neurologist told us what the neonatologist told us at 3 days old. We don't know what the future holds for Leeland just like any other child but all we can do is provide him with everything he needs to be as successful as possible.
We should be headed home late today or tomorrow. When I get home, I will try to update as much as I can.  There are so many details that I've left out that might explain things better so I'll try to get around to those too. Please feel free to ask questions. Keep praying for little Leeland.

Prayers for Leeland

I started to write a long post but it wouldn't work from my phone, so i thought I'd try this short one to see if it will work. We are back in the hospital with Leeland after he had two more apneic episodes at home and three more since we've been at Children's. We are searching for answers and he is getting ready to go under anesthesia for an MRI.  We covet your prayers for our sweet baby.

Another Leeland Update

I didn't mean to leave the couple people who are reading this hanging.  After Leeland's second cataract surgery, our lives were consumed with eye drops.  I'll try to make this as brief as possible.  Here's what's going on:

Eyes- About 4 weeks post surgery we were giving Leeland 6 drops a day in both eyes.  Every week we would taper off one drop a day.  One drop kept his pupil dilated and the other drop was an antibiotic.  Because his pupils were constantly dilated, he was super sensitive to the light/sun.  Recovery went as good as could be expected but we had a couple of scares when his eyes would just start bleeding out of the blue.  We were told this is perfectly normal though.  Two weeks after his second surgery we went in to get his contacts.  They are soft contacts but a little thicker than most soft contacts.  They bubble out in the middle and that is where most of the prescription is concentrated.  As I'm sure you can imagine, putting them in and taking them out isn't the easiest thing in the world, but it has become part of our new normal.  At first we were having to take them out and put them in multiple times a day because of the drops, but now that the drops are complete, we put them in once in the morning and then take them out at night before he goes to sleep.  It has gotten a little more difficult now that he has found his hands and they always seem to make their way up to his eyes. We are seeing improvements in his vision but it has been very slow.  He is beginning to track objects and show interest in his toys.  He seems to still have a hard time focusing on things, but if he ever locks onto something, he can do it.  We will continue to visit the ophthalmologist about every 3 months to check on his progress.

Neurology-I had been dreading this appointment because of what I thought she might tell me, but it went really well and she answered a lot of my questions.  She examined Leeland and did all of the tests that I knew she would do.  I have been a little obsessed with watching videos of neurological exams, so we had been practicing at home.  In terms of 3 month milestones, he was right on track but did have some head lag when pulled to a sitting position from laying on his back and a little trouble lifting his chest off the table when placed on his tummy.  She diagnosed him with mild truncal hypotonia.  The cause of the hypotonia is still unknown.  It could be caused by something in the central nervous system, but it is too early to tell.  His head is also measuring small.  It is on the curve and continuing to grow, but it is something that they are monitoring closely.  Her recommendation was to make sure Leeland was enrolled in an early intervention program.  I told her that I had never seen the infamous CT scan that everyone keeps referring to so she was able to pull it up for me on the computer. I guess when we were told that there were "several" calcification's, I was expecting it to look like tiny specs all over the brain.  There were two.  TWO! and they were so tiny, like a pin prick.  I asked her all about the scary degenerative muscle diseases I'd read about and she assured me that Leeland did not have those (and she told me to stop reading the Internet).  Another big concern of mine has been Cerebral Palsy, mainly because of his hypotonia.  Again she told me to stop reading the Internet.  She couldn't tell me "no, he doesn't have that" because it is something that gets diagnosed as babies fail to meet their milestones and we're just not there yet.  She did tell me though that she felt "IF" we were to have an answer explaining all of Leeland's problems then it would probably lie with Genetics.  Because Leeland isn't having any neurological "episodes" we were sent on our way with a "your still in the system as a patient, so come back if you need to, but otherwise I don't feel like I need to make a follow up appointment."

Genetics-I can't remember what I said about this last time, but essentially we were waiting on results from blood that was drawn during his first cataract surgery.  These tests were for chromosomal disorders, specifically those that have bilateral congenital cataracts as markers.  These disorders were scary.  Word to the wise, don't ever start researching genetic disorders!  You could have a toenail that is a little longer than it's supposed to be and a freckle in the wrong place and suddenly you have some rare genetic condition.  Anyway, I had been waiting and waiting on these results, so the day before Leeland's neurology appointment I called Dr. R in Genetics to see if any results had come in.  My excuse was that it would be helpful to have all of the information available before going to visit the neurologist.  Dr. R is brilliant but there is nothing warm and fuzzy about him (plus, I can hardly understand a word he says).  He told me he would look up Leeland's results in the computer and call me back.  Kyle was home for lunch and the kids were screaming so I stepped into the bathroom to wait on his phone call.  I just remember thinking that I was potentially about to get some life changing news and my kids had no idea, it was just like any other day.  Dr. R called right back and said "I have Leeland's results and they are ABNORMAL."  I really think I had a mini heart attack.  I thought that maybe I'd heard him wrong, so I said "did you say normal or abnormal?" He explained that the scary conditions that I'd been worried about were negative, but they did find that 11% of Leeland's cells have an extra Y chromosome.  A man with this condition on 100% of his cells is called an XYY Male.  It is not hereditary, so it is not something that is passed down or something that Leeland will pass down.  The only proven side effect of a 100% XYY Male is that grow to be about 3 inches taller than expected based on the height of their parents.  It's occurs in 1 in 1000 male births and has nothing to do with fertility.  I was freaking out as he told me all of this, but the more he explained it, the less worried I got.  Finally I just said, "hold on, I just need to know, are there a lot of people walking around that have this, that don't know they have it and will never know they have it unless they have Genetic testing?"  His answer, "yes, and that is for males that have it on 100% of their cells.  Leeland has it on 11%."  I felt much better, but still had a lot of questions.  He said that because this was not our answer for the cataracts, hypotonia and calcification's, he wanted us to come in.  We scheduled an appointment for the next day right after his neuro exam.  I don't wish an appointment in the UAB Genetics building on anyone.  It is a CREEPY place.  After they pulled out the measuring tape an measured everything on Leeland (space between eyes, distance from eyes to ears, length of arms, etc.) we really didn't learn anything new.  They recommended that we have an MRI done in 3 months to check on brain development and to have more bloodwork run to test for some specific metabolic disorders.  Dr. R felt like these would probably come back normal based on his initial metabolic screening being normal and Leeland lacking some of the markers of these disorders, but he wanted to be sure.  These results will specifically let us know if he has any enzyme deficiencies. 

Pediatrician- I think I've said this before, but we are sooooo blessed to go to the absolute best Pediatrician.  We were noticing that Leeland was having consistently mucousy stools, which is exactly what Baylor had when we realized he was allergic to my milk.  Dr. C told us to try the non milk protein based formula to see if it made a difference and it immediately did.  My milk supply had dropped down to nothing after the NICU probably due to stress, so it wasn't a huge sacrifice to give up nursing, other than the emotional attachment of it.  Dr. C also referred us to the Bell Center for early intervention.  Leeland will go on July 24 for his initial evaluation.  From there, he will have sessions with the Physical Therapist, Occupational Therapist, Child Development Specialist and Speech Therapist.  Basically, they will be working with Leeland to make sure he is on track with his milestones.  We are so lucky to have such a wonderful place in Birmingham. 

Next Steps-We will continue to see Dr. C every month to check on basic progress.  Bell Center twice a week beginning in July.  MRI in about 3 months with a follow-up Genetics appointment.  They should have his metabolic results by then.  Over night sleep study at Children's at the end of July to see if we need to keep the apnea monitor.  Monthly appointments with the Ophthalmologist handling Leeland's contacts and the surgeon who removed the cataracts. 

P.S.  This is not grammatically correct!  Please don't judge my spelling or run on sentences ;-) Continue to pray for our baby and our sanity!