A Different Boat

So here is the current list of specialists for Wesley: Special Care Pediatrician Dietitian Gastroenterologist General Surgeon Neurologist Hematologist ENT Audiologist Geneticist Physical Therapist Speech Therapist And now I have my very own specialists too: Endocrinologist Hematologist And if we decide to have another baby, a perinatalogist  So here's the latest on the medical front. Out of all the tests my doctor did, 3 things were abnormal.  First, I have hyperthyroidism which indicates that I probably inherited Graves disease . Not a huge deal but it means I will probably have to take thyroid medication for the rest of my life and regularly see an endocrinologist. Also it makes future pregnancies more risky and require extra monitoring.  Second, my d-dimmer value was slightly elevated so that combined with a potential clotting disorder and high heart rate I had to go get checked to make sure I didn't have a blood clot in my legs or lungs. Th...

Last week I had a glimpse into what my life would be like if I went back to work. Monday through Thurday mornings I ran a dive camp for the Evergreen Rec Center. So each morning I got up with Wesley, gave him his medications and played with him for a few minutes before I left him with Colby's mom and grandma (who came out for the week to watch Wes for me). Then I went and taught 8-12 year olds how to dive (which quickly reminded me why I chose to be a high school teacher instead of elementary). So for a net profit of $80, I spent 4 mornings away from my son. I'm sure it was good for me to let go a little bit and do something not as a mother, but ultimately it doesn't seem like it was worth it. Wesley was very well taken care of any they even very graciously cleaned my house while I was gone, but every morning I just wanted to stay home with my baby boy. I am blessed to be able to stay home most of the time currently and next school year. I don't know what will happen ...

Well after his neurologist reviewed his new MRI, Wesley now has a diagnosis of Cerebral Palsy.  The good news is they didn't see anything they weren't expecting on the MRI but it did show that the damaged parts of his brain have died and fluid has taken their place.  After the neurologist explained everything to me, I asked if she thought CP would be in Wesley's future.  She responded that they don't normally diagnose CP until a child is 2-5 years old, but she would feel comfortable going ahead and giving Wesley that diagnosis so he can get "as many services as possible."  Apparently the way our system works, many services are not available until there is a name for whatever is wrong with a child. So CP is our diagnosis (I know technically it's only Wesley's diagnosis but I feel like it affects our whole family so we can all claim it). I think I had prepared myself for the inevitability of this so it doesn't hit as hard as I thought it might.  W...

I started reading the Bible to Wesley a few months ago. We got to the story of Abraham taking Issac up on the mountain to sacrifice him .  Whenever I had read that story in the past, I always thought that what Abraham did would have been really hard but that I could do it if God asked me to.  Well, sitting there holding my baby boy whom I had aleady almost lost, I felt so protective of him and realized that my faith is not nearly as strong as Abraham's. To be truly honest with myself, if God asked me today to sacrifice Wesley, I think I would completely ignore Him. It's one thing if God asks you to sacrifice of yourself for Him but it's a totally different game if you're asked to sacrifice of your child. At first I found myself feeling angry that God would ask Abraham to do such a thing. It frankly seems like a cruel thing to ask of any parent.  Or even the story of Job seems cruel for God to allow him to suffer like that. But there is more to every story than jus...

Quick medical update: Wesley's neurologist was out today so her nurse left her a message to call me with MRI results on Monday,  so more waiting. In March the hearing clinic drew labs on Wesley for some genetic tests.  I talked to the genticist this week and she said she still doesn't have any results but will contact me as soon as she does (which she thought should be soon).  They also drew labs for some more genetic tests for Wesley yesterday with his MRI but it will probably be a few months before we hear back about those. I had a doctor's appointment today to draw blood looking for clotting disorders that could have led to my previous miscarriage and all the problems with Wesley.   Honestly, I hope the tests reveal some answers rather than more dead ends.  I feel like I shouldn't hope that I have some disorder but I would rather have something I can manage rather than facing future pregnancies terrified that it could happen again.  When they checke...

We woke up bright and early this morning to get to the hospital by 7:30 for Wesley's MRI appointment.  Because he's so little, they had to sedate him with general anesthesia to be able to get good MRI pictures.  They took him back at 8:30 and were done around 9:30.  They didn't let me go back with him so mom and I had to sit in the waiting room.  They said he did well and he woke up from the anesthesia quickly.  When we met him in the recovery room he was so sad (but cute).  He was crying but didn't even want to open his eyes.  It was as if he was trying to tell us that he felt funny and didn't like it.  Waking up from anesthesia is a weird enough feeling when you know what happened but I can't imagine how confusing and strange it must feel to a little baby.  We were able to leave shortly after that and were home by 11.  They put a sticker on his back that he had to wear on the ride home saying that he received anesthesia today so if we...

Ok, maybe the blog title is over dramatic especially considering some of the very scary days we had while Wesley was still in the hospital, but this was up there. This morning was the last regular day of Anchor Center therapy before they start their summer program (which is less often and less formal) in two weeks.  They had a year end video and popsicles for all the kids to try.  I was really looking forward to this and was excited to see what Wesley would think about a popsicle.  Well the last couple weeks he has been increasingly cranky and hasn't been able to do as much in therapy as he used to because he gets upset and inconsolably cries.  Today was probably the worst he has done yet.  In the 1 1/2 hours we were there, he laid next to a lightbox for about 5 minutes and swung outside for not even 5 minutes.  The rest of the time was spent crying and fussing (didn't even get a chance to try the popsicle).  It's so incredibly frustrating when we d...

I am so incredibly blessed by everyone who is following Wesley's story. I may not respond to your individual comments or messages but please know that I read them and am deeply encouraged. I can't imagine where I would be right now without the love and encouragement we've received so far in Wesley's life.  I know that his life is a testament to many many answered prayers ( please keep praying because it's still a long road ahead). I hope and pray that he is able to return those blessings. Sometimes I wonder why God chose to save him. I often think it's because He knew I couldn't survive the pain of losing my baby, but I hope that there is yet a bigger purpose for his life. Right now it seems so hard to see the future. It's hard to even have dreams about the future because I can't bare the thought of him being unable (rather than unwilling) to fulfill those dreams.  I am able to face those sobering thoughts because of all the support everyone has gi...

The more I've read and researched, I realized I wasn't reading between the lines when I last talked to the neurologist about Wesley's MRI (which is scheduled for Thursday FYI). When she said she wanted to do another MRI so that Wesley can get as many services as possible, I now realize she is probably going to diagnose him with cerebral palsy after reviewing his new MRI. CP is a common diagnosis for kids who have hypoxic-ichemic encephalopathy (damage caused by a lack of oxygen and blood flow to the brain) and yet is not talked about until an official diagnosis is made (often not until 3years of age!). It's as if the doctors don't want to even mention the possibility it until they are ready to diagnose. I find that whole idea strange. It's as if the docs don't think the parents are strong enough to handle the idea of CP or as if all CP parents are severely disabled. After living through my child almost dying, I think I deserve to know any possible dia...