Great News!

Annie had another sonogram this week to check on the blood clot in her arm. Last month's sonogram had showed no change, but this week the sonogram showed that the clot is "resolved or nearly resolved" so she no longer needs her twice daily shots of Lovenox! We are rather surprised to have it resolve so quickly, but feel so relieved! That arm has been cleared for vascular access now, which is a huge blessing!

Because Annie's platelet levels haven't been stable over the past several months, they will continue to monitor that. She'll have more blood work done just before Christmas, so we'll see what her level is and go from there. If her platelets are too high, she will be more prone to additional clots, so they are going to keep a close eye on her lab values over the next while.

With no more injections, her thighs will also be able to heal from the abscess and hematomas that she's developed from the injections. We are so grateful for good news this week! Now if she can only get over her cold...

Brain MRI Results

Annie had her MRI of her brain last week. She had to be sedated for it and receive contrast through an IV. They had to try 4 different places in order to finally get an IV that worked. Her left arm is off limits for IVs since she has her blood clot, and she had had lab work done the day before which required 3 tries in her right arm, so vascular access was rather limited.

Annie's last MRI of her brain was probably done when she was just 2 years old. Or maybe she had another a couple years later, but either way, it's been a long time and the hospital here had no previous MRI to compare to since her others had been done in Texas. Although the system showed that she had a CT scan of her head done here in 2014 which we don't remember. She probably had that done when she had her terrible infection in her spine.

This new MRI report is a bit more detailed and specific than her MRI when she was little. I remember learning all of the medical terms of the findings 17 years ago when Annie had her very first brain MRI before she was even born. Terms like polymicrogyria, heterotopias, agenesis of the corpus callosum, arachnoid cysts, choroid plexus papillomas, etc. (My Aicardi friends will understand all that, you others can ask me later or go google the terms.) ;)  Reading all those terms again takes me back to the day we heard them all for the very first time, feeling stunned, overwhelmed and grieving the loss of our child. Now I can't imagine a life without Aicardi Syndrome!

So the bottom line is that nothing has really changed and there's nothing to worry about. It's still fascinating to read about all the malformations Annie has in there. It's easy to forget really how many different issues are wrong in her brain! Next time we're at the clinic, we'll ask to see the actual images, which is always very interesting since there are so many malformations.

The one interesting point from this latest MRI report is that it says she has left cerebellar atrophy versus dysplasia. So that means that a part of her brain has weakened over time as opposed to that area having just developed more weakly originally. And they can also tell from the MRI that her seizures are coming from the areas of polymicrogyria--which are the areas where she has extra folds in her brain, but those folds are really shallow and not as deep as they should be. So that's interesting to see and it makes sense that those areas would be a source of seizures.

It's fascinating to think about what Annie really comprehends and experiences with her brain so jumbled. It reminds me how much of a miracle it is that she understands as much as she does, that her seizures are as well controlled as they are, and that she is as happy as she is. After her first MRI before she was born, no one expected her to live after seeing the condition of her brain. But here she is, a happy 17 year old! I'm so grateful for her!

Much Better Numbers!

I don't know what difference a week made, but Annie's lab values yesterday were much improved! Her WBC came down from 15k to 8k! And even her platelets dropped from over 900k to 588k! Annie still has the abscess in her leg with some lingering swelling, but it's no longer sore for her. We'll just continue to watch it.  Next on her agenda is her brain MRI next Wednesday.

Back to the ER

After a great first week back at school, we ended up having to take Annie in to the ER last night. As we were changing her, we discovered that where we give injections on her leg was red, swollen, and hard.  We suspected she must have an abscess that would likely need to be drained or at least require some antibiotics. 

They got sonogram imaging of it at the ER and determined that she does have a fluid-filled sac about 0.5x1.5cm in size. The affected part of her legs is more like 4"x2" in size, but that appears to just be inflamed tissue in response to the abscess.

The ER doctor consulted with hematology, given Annie's circumstances, and they decided it would be best to just watch it over the weekend.  Since she is on lovenox, draining it could potentially pose some risks. And since they don't know if it's bacterial, or what bacteria are there, we want to avoid broad spectrum antibiotics, given Annie's history. There is a possibility that it may resolve on it's own in a few days. So we are just watching it and will talk with hematology on Monday.

Hematology Update

I took Annie to her hematology appointment today. She had her sonogram done yesterday of the blood clot in her arm. It hasn't changed much, but is maybe a tiny bit smaller than last month, but not by much. Her left axillary vein is still occluded and her basilic vein is still nearly occluded.

The twice daily lovenox shots we give her are to help prevent more blood clots from forming because the blood becomes turbulent as it passes over this clot and it can cause additional clotting. They don't anticipate her blood clot to dissolve or go away. We are simply waiting for one of two things to happen with it... 1- wait for the veins to scar over from the clot (other veins would then compensate for the loss of those veins) or 2- wait for the blood clot to get more stably attached to the vein wall. As more time passes, the chance of the clot dislodging or moving decreases. There would still be a narrowing of her vein at that point, but the risks associated with the clot would be lower.

We did lab work yesterday and got those results today as well. Annie's white blood count is back up to just over 15k. And her platelets are over 900. Not good. She is not having symptoms of any kind of illness, so they tested her urine and so far the initial results look great--negative for a UTI--but they will send it for culture as well. The hematologist is concerned that her platelets are so high because that puts her at an even more increased risk of developing clots. He also noticed some vascular patchiness on her left hand that he said is concerning, but told us just to watch it and contact him if it gets worse.

Due to these changes, he wants us to repeat the blood work in a week to get another CBC and check her lovenox level. He may have to make some changes to her treatment, but we'll wait to see what the results are next week. Otherwise, we'll return in 6 weeks for another sonogram and consultation.

Back to School!

Annie made it back to school today and stayed the entire school day! We're so grateful she's finally doing better and is getting back to her normal self! I think she was glad to get back, and it sounds like her friends were happy to finally see her again!

It was a strange day for me. After caring for her full-time for the last 5 months, it was bittersweet to send her back to school. I kept feeling like I needed to go into her room to check on her, to change her, or do some other part of her daily routine. But I'm so glad she's back at school where she can have a lot more fun than hanging out with me at home! I just hope she stays away from any sick kids at school now!

A Pretty Good Weekend

Annie has had a pretty good weekend. We're trying to get her up at a more regular time each day, so she's taking some cat naps during the day, but otherwise doing pretty well. Even her drooling has slowed down. So we are planning to send her to school tomorrow! School transportation picks her up at a dark and early 6:50am! So we'll see how she does.

Hopefully she'll make it through a full school day tomorrow, but Tuesday and Wednesday will be shorter days for her at school since she has appointments at the hospital those days. She has her ultrasound of her blood clot on Tuesday and we meet with the hematologist on Wednesday. So I think we're getting a little bit closer to being back to our more normal routines!

One Sleepy Girl

After suddenly stopping the phenytoin on Monday, Annie did have one day of increased seizures, and long seizures, but she now seems to be back to her baseline as far as the seizures go. She is back to having her regular spasms and startle seizures. If only Molly wouldn't sneeze so often and abruptly!

The big change the last couple days has been Annie's sleepiness. The last two mornings, Annie has slept in until 11:30am, which is not like her! I haven't dared wake her up because I don't want to trigger seizures, and I figure her body must need the sleep. Once she wakes up, she's still a little tired it seems, and she's not quite as active with her toys or as vocal as normal. We wonder if this is still a side effect of coming off the phenytoin so suddenly.

Annie is still drooling like crazy and has a lot of thick phlegm that is requiring more suction than normal. We are hoping its just from the tail end of her cold. We had her IEP meeting at the school on Wednesday, and are looking forward to transitioning her back to school, but I'm not sure how they will keep her dry! Her seizures seem stable enough for her to return to school, but I also don't know how she will tolerate getting up at 6:00am when she's been sleeping in until 11:30 each morning. We are going to try to get her back on a more normal sleep schedule the next few days with the hopes she can return to school on Monday, even if she goes late. She won't have full days of school next Tuesday or Wednesday anyway due to more appointments at the hospital. So hopefully we can do a nice easy transition to school next week.

Justin's Talk About Annie

Justin decided to let me share his talk that he gave on Sunday in church if you are interested in listening. The first half or so is about Annie's diagnosis, abilities, how to interact with Annie, etc., and the second half is a little bit more about how the gospel of Jesus Christ applies to Annie's life and brings us peace and comfort as we face challenges with her.

Slight Change of Plans

Due to the rash that Annie has developed, our neurologist has instructed us to immediately stop the phenytoin. It's usually best to do a slow wean over a couple weeks, but our wean took place over 36 hours! This does put Annie at an increased risk of more seizures, so we'll need to keep an extra eye on her the next few days.

We've had to reschedule Annie's IEP yet again, due to this change. We won't be able to send Annie back to school until we make sure her seizures are stable. We do plan to have her IEP on Wednesday now, whether she returns to school sometime this week or not.

Annie has been feeling a bit better today with less congestion and not as much need for suction. So things in that area seem to be improving.