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We are doing well! Luke will be one in less than 3 weeks.... getting a little anxious about that. But, it's going to be great. He's rolling around & happy as a clam.
Andrew is great too. Been a big help with Luke!
Happy Mother's Day tomorrow!
How are things with Miss Ava?
Thanks Yvonne (Jaidynsmum) for my beautiful siggy!
Ava is recouping happily at home after a very rough week. She has another round of tests coming up. We are waiting for MRI results very nervously. They are testing for so much, but right now they're focusing on tethered spinal cord, hydrocephalus and something called a chiari malformation. Hoping and praying Ava's MRI doesn't show these. They say she's macrocephalic and has a few other markers. There are a few other things we're being presented with, but I'm not ready to talk about them until we get more answers. Everyone else here is great
I'm so glad Luke is doing well and rolling! Both your boys are adorable!
Overall we are doing about the same. Ty is recovering from surgery well, and we have seen no bleeding thus far which is great for us. He might even make it back to school on Monday.
Layne saw the dev ped on friday and like everyone else here we get new issues everytime we do. We are going to hold off another couple months and then do another mri and more neuropsych testing. He believes we are looking at something more cognitive than we originally thought. Most likely it wont effect our already existing routine just give us more information so that we can help him. Oh and he is now saying that seizures are not out of the equation. We have seen them before but havent been able to pick them up on EEG's or found a cause on MRI's, but now he is saying that he still thinks they are going to play a part in his overall health.
Other than that, we're about the same.
Glad Ava is home and resting, and hope they can find some answers in the testing she had to do. I completely understand not talking about things until they are actually a diagnosis. It can all be too much to handle if we talk about EVERYTHING that could POSSIBLY be wrong. KUP
David: Doing great. Just turned 7 Tuesday and we spent it at Disneyland. He is my dare devil who lovces to ride rollercoasters (even ones that go upside down!) and even talks daddy into them. We had to take him to the ER tonight because he got bit by a spider or something a few days ago and didn't tell us and it developed into a MRSA infection, but he's doing fine and told the doctor "no liquid medicine please. I'm not a baby and I take pills!"
Melanie: Oh, she is a handful. She has daddy wrapped around her fingers so tight. He walks in the door at 10:45 at night and she immediately flies out of bed and won't go back to sleep until 2 AM because daddy won't leave her alone as long as she says "daddy home, love you". But she is talking and this is a huge milestone for her.
Joey: Joey has scans MOnday and frankly they scare me. His breathing is getting raspy again, and I told his oncologist who immediately began discussing salvage therapy with me. There is a good chance his disease is growing again and that has me terrified but I am choosing to remain optimistic at least through the weekend and believe its either a cold or teething. And monitor it closely. The oncologist did say she was comfortable waiting until monday for scans so we wait.