Tuesday, July 28, 2015

20 Months

What’s been going on in the last month and a half:

Lily had an almost 72 hour EEG: Monitored by a different neurologist, he took her off one seizure medication that she had been on since the NICU and that we had been increasing pretty steadily until we hit the max a few months ago. He put her on a different medication (that she takes less of) and it has changed her life (and ours) for the better. After a week on it, (and off the other medicine), the seizures that we were worried about had stopped. She’s been much happier and more relaxed. Before she would fuss and cry about having her bottom on the ground, which makes it difficult to learn to sit up, but now she’s much happier on the ground and can just move better in general.
We have also weaned her off the other seizure medicine she was taking (so now she’s only on one). However, we’re starting to see things that could be seizures (rapid eye blinking, other strange movements/sounds), so we’ll likely have another EEG in the future and will be talking with the neurologist about what to do with her medicine.

Head wrapped up for EEG

A week after the EEG, Lily got her g-tube. The surgery was uneventful, thank goodness, and everything went really well. We were home the next day and within a week, Lily had gained a pound. There’s been a little bit of a learning curve with the tube, but it’s been so so good for Lily. The other kids like to help with giving her medicine (so much easier now!) and getting her set up to eat. We currently use gravity bags (they look like IV bags) that we put the formula in and then it drips down the tube and into her belly. She can eat (and get medicine) while she sleeps, which is pretty handy, and she is still nursing and taking purees by mouth. We haven’t weighed her in a while, but she’s definitely getting bigger, which is so good. The other day I was looking at her and thinking that her head looked bigger. I had thought that a few months ago and when I measured, it was the same, so I tried to put it out of my mind. I kept thinking it, though, and so steeled myself and measured it anyway- and her head has grown a centimeter! I had Danny measure it, too, just to make sure I wasn’t making it up, and I wasn’t. We’re thrilled at this! Imagine that- getting enough to eat helps you grow!

Lily's g-tube. The white mesh wrap keeps the end of the tube from hanging down when not in use.
Sleep eating

We received her bath chair, wheelchair (it’s great), and stander (she’s not a total fan), a day before the g-tube, so we’ve had a lot going on all at once for her. We’re happy that she has what she needs now.

Happy in her wheelchair at big brother's piano recital

Daniel helping Lily play swords

We also moved from Florida to Virginia at the beginning of July, so Lily be getting new doctors and therapists. The week before we left, all the kids got colds, and of course Lily got it worse. Double ear infections and so much mucus we ended up in the ER two days before we left. Nothing like starting a week long road trip with antibiotics, steroids, and an inhaler!

At the ER. A rare smile while she was sick!

One awesome thing that’s happened in the last week that we’ve been waiting a long time for- Lily has started to laugh! (And we’re about 99% sure it’s not seizures…usually) It’s really the best thing ever, even at 1:30 in the morning. When she laughs, everyone stops what they’re doing and just enjoys it, laughing with her. We don’t take anything for granted around here.

And...Lily's sleep went from bad to amazing right after the g-tube and then back to bad. She's usually up until 1-2am and then may sleep until 6, or may be up again before that. Then she wants to sleep all morning and still takes a few shorter naps during the afternoon/evening. We're not entirely sure what to do, as she is supposed to have 5 feedings, 4 hours apart during the day. If we start at 7, that's 7-11-3-7-11...which means we're up until after midnight every night. We've been trying to get up at 6 to pull it all back an hour, but that's an almost heroic feat if we've been up until 2. She's just not able to take in enough for us to only do 4 feedings (and we can tell she's hungry for the last one), so we're just stuck. And so very tired, still.

So continued prayers for Lily's sleep at night would be very much appreciated!

Sunday, April 26, 2015

17 months

We had picked out a wheelchair for Lily- all I had to do was pick a color- but I just couldn't shake the feeling that it wasn't the right decision. After talking with our PT, we decided to go with a different company. Not only will we be getting a wheelchair that I think will better suit her and our family, but she will be getting a stander and a bath chair. It currently takes two people to hold Lily sitting up and give her a bath in the baby bath (we found she prefers to sit than lay back), and it's pretty tricky, especially as she gets taller. The bath chair will keep her head steady and we can buckle her in, keeping her safe. Hopefully everything will be delivered within 8 weeks.

Trying out the sample stander. Not too impressed.

Lily is 17 months old now. Life is considerably different for her than for other 17 month olds. I will say- that can be very, very difficult. It can get annoying to not be able to just plop her down and have her sit; she always has to have a comfy place to be able to lay down. She's out grown (in length, at least) her infant car seat, but since we don't have a wheelchair for her yet, and she isn't able to stay upright in the stroller (and hates to be worn), we don't have much of a choice but to keep her in it. You know how you can take your child out of the car seat and sit them in the shopping cart? Lily can't do that, and until we're able to get yet another special seat for her that fits in carts and on other chairs, we've got no other choice. Even when we do get the wheelchair, it will be easier to have her in the cart than to have to push the wheelchair and pull a shopping cart.

One big thing that's good: Lily hasn't had a tonic seizure since March 16th. We had upped her dose of medicine twice to achieve this, which leads to a bit of bad news- one of the side effects of the medicine is loss of appetite. For someone who doesn't eat a lot to begin with, this loss of appetite is devastating. Down a pound, after having been slowly gaining, we're making the decision to have a g-tube placed. Food is such a stress right now and we just can't get enough calories in her. Sometimes she'll just sit there with food in her mouth, refusing to swallow. This is especially frustrating while trying to give her the medicine that she has to take with food- the same medicine that makes her not want to eat. One step forward, two steps back.

We're seeing the g-tube as a good thing- it will enable Lily to have healthy food (we'll be starting a blenderized diet) and hopefully since she'll be full, will be able to sleep better and work harder. It will be much easier to give her medicine through the tube and we'll be able to add supplements that we couldn't if she could only take them orally. One other big reason for the tube is her lack of coordination when it comes to drinking. We're working on getting her to take a bottle (or sippy cup or straw), but she's having a difficult time. She nurses fine, but one day, that's going to need to stop and she will still need to be hydrated. She's got her next appointment with the GI doctor in a few weeks and we'll hopefully be scheduling the surgery then.

Trying smoothie (via spoon) for the first time, she is saying, "Mmm!"

Lily is still having spasm seizures and will be having a 48 hour EEG in a few weeks to try and determine what we can do about those, and to see if she's having any other kinds. It will be good to get other opinions and treatment options.

In the mean time, we're just keepin' on, keepin' on. One morning while Lily was getting her medicine, our 7 year old (whom she adores) was talking with her and hugging her and said to me, "Mommy, Lily's perfect." I agreed.

Friday, March 20, 2015

Hearing Aids

Lily received her hearing aids last week- finally! The part that goes behind her ear is light pink and the part that fits in is purple, though she'll be going every few months to get new ear molds as she grows and we'll be able to change the color of those. She tolerates them very well and seems to be happy with them. We didn't have any magical moment the first time she had them in, but we weren't really expecting it since we knew that she could hear already. We're very happy that she has them- at least she won't miss anything now!

If you could pray for her sleep, we'd be appreciative. I've grown accustomed to her short 30-45 minute naps, but the hours spent up during the night and early morning are very very wearisome. Moms need more than 4 or 5 hours of interrupted sleep....at least this one does. Many thanks.

From the side(ish)

Seriously adorable

Sunday, March 1, 2015

15 months

Lily finally has a wheelchair. It's a loaner while we wait to figure out what kind of chair we are going to be able to get for her. The original chair we picked is a brand new model that no one around here has seen yet, and the early intervention people are hesitant to pay for something so pricey that she's never sat in. We're hoping that we'll be able to try it out before having to commit to it, or be able to try out something else that might work better. The main problem is that because Lily is so small, our options are limited. For now we've got this one that works alright but I'd be bummed if we had to have it for the next 5 years. At least Lily is better supported in it than she was in her other little high chair. If we can get a better chest harness and head rest, she'll be even more comfortable.

Slumpy in the high chair

If you see her out in it, it's okay to look (and ask questions, especially kid's questions!). We know she's in it. People tend to think of wheelchairs as limiting, but it's actually the opposite. If it weren't for wheelchairs, think of all the people who would be otherwise stuck at home. Instead of feeling sorry for people that use wheels, just treat them like everyone else.

Lily's new ride
Lily is still having tonic and spasm seizures (and may also be having absence and atonic seizures, but it's hard to tell), despite being on a new medication. Our next step is going to be a longer EEG, either 24, 48, or 72 hours, and meeting with an Epileptologist, who specializes in Epilepsy, because we can't seem to get the seizures under control.

Despite nursing seemingly constantly and doing a fairly good job at eating purees, Lily has managed to lose weight, though she is getting taller. Her head hasn't gotten any bigger. We had the opportunity to see her recent MRI when we were at a neurologist appointment. I mentioned that after her CT scan last year the neurosurgeon said he was surprised she could see (and was again impressed with her after the last CT scan and MRI when we saw him at the end of December). The neurologist said that he was surprised, too, because she basically doesn't have the back part (Occipital) of her brain anymore, where most of the vision parts are. The other parts have been affected, too, though he said the front is better off and her Cerebellum seems to have been untouched. Another visit to the ophthalmologist confirms that she can see and that her astigmatism seems to have improved.

Lily still hates physical therapy with a passion, and that makes it difficult to do on our own, too. She's rolled over five or six more times and it's actually pretty impressive how she can get around a little by turning from her back to her side to her back again. Since we haven't had many milestones to celebrate, we rejoice in the inch and millimeterstones that Lily has accomplished. Each time she smiles, every laugh we get (which are few), each time she's covered in food from bringing her hands to her mouth and face, we get excited about it all. Whether or not she meant to push the truck on her tray, everyone cheers. 

Working hard

Here is a video of her in action:

Two blog posts by other moms to help you out (and us, too).
How to talk about kids with special needs

To the mom or dad who told their child not to stare at mine

Thursday, January 1, 2015

Happy New Year!

In 2014, Lily had 84 appointments, including physical therapy. I have a feeling that number will be easily beat in 2015.

The big news is from our last appointment of 2014. We met with the neurosurgeon yesterday to discuss her recent CT Scan and MRI and he said that he's not recommending surgery. There is enough room between her brain and her skull and excess fluid isn't a concern, so the surgery to reshape her skull would just be cosmetic. The fact of the matter is that if her brain isn't growing, her skull isn't going to grow, either. If her brain was pressing against her skull, we would have the surgery, but it's not...so, mixed feelings on the situation.

Lily was measured for a wheelchair this week (it looks more like a stroller than a wheelchair) and we're excited that she'll have the support that she needs. No idea how long it's going to take to get, though.

We're starting off this year with an EEG tomorrow, hoping to catch some of the seizures she's having. Next week we're heading back to Miami for the audiologist and to hopefully get fitted for hearing aids. Then, since Lily's not going to have surgery, we'll have a week off of appointments, besides PT!

We wish you all a happy and blessed New Year!

Thursday, December 25, 2014

Merry Christmas!

We had the blessing of being able to visit the Shrine of Our Lady of La Leche in St. Augustine, Florida this past weekend. Our Lady of La Leche has special meaning to us because a little over a year ago, the NICU nurses thought Lily wouldn't be able to use a bottle, let alone breastfeed. After a novena to Our Lady of La Leche, she did! That enabled her to come home, where she's been exclusively breastfed. It was such a joy to be able to nurse Lily at the Shrine of Our Lady of La Leche, and thank her for her intercession. Thank you for praying that novena with us last year.

Our Lady of La Leche, Mother of our Savior and Mother of Mothers, pray for us!

We also want to wish you all a very Merry Christmas! May our Lord and Savior Jesus Christ bless you this coming year!


Monday, December 1, 2014

Coming up next....

Lest you think that things might be slowing down around here now that Lily is one….

Lily’s recent CT Scan shows that one of the sutures (the metopic suture) on her skull has closed, resulting in the sort of pinched look of her head, forehead and up. We’ll be getting an MRI done soon to check on her brain and fluid in some ventricles and to see what the neurosurgeon thinks about it all. The plastic surgeon is pretty sure she’s going to need to have surgery to correct the shape of her skull, in order to give her brain as much room as they can for it to grow. If there is too much fluid, there may be shunts placed. We won’t know what is going to happen until after the MRI and meeting with the neurosurgeon on December 31st. (Happy New Year’s Eve, I guess.) We have a surgery date scheduled for January 12th, just in case.

We’ve increased Lily’s physical therapy to two times a week and have started the process of getting a customized wheelchair for her. She is not getting the support she needs from the highchair for feeding and being able to interact with us while she’s in it. She’s outgrowing her car seat carrier, and without good trunk and head support, she won’t be able to ride in the stroller comfortably.
We will continue to work on getting her sitting and mobile, but this is the best option for her and us at this time. If she does walk, she’ll be the cutest little girl walking around. If she never walks? She’ll be the cutest little girl in a wheelchair. Win win, right?

It has been discovered that she’s gotten bored with bananas, so we’re branching out. Current favorite food- mangoes. At our follow up with the GI doctor two weeks ago, we found out she has gained about two pounds and 4 centimeters in the past two months. She's on the low end, but she’s on the chart!
Her head has also grown another half centimeter.

Seizures are still happening- she’s had a few since our last update. Now that I’ve done a little research, I know that they are tonic seizures, and though scary when it’s happening, she’s fine when they’re done.
This post was written by another mom of a child who has seizures. It's definitely how I feel about it all.

As always, thank you for your continued prayers!