Saturday, December 26, 2015

Merry Christmas!

Merry Christmas from our family to yours! Thank you so much for praying for us and Lily!

Lily is excited about unwrapping her bright orange Slinky!

Monday, November 30, 2015

St. Jude Novena Update

Thank you for praying the St. Jude Novena with us. After trying for a month to get all the records from Florida sent to Virginia, and after being told that after they got the paperwork it would be another month before we got an appointment, we got a call on Day 2 of the Novena that the neurologist got everything in and had an appointment that day, if we’d like it. Well, of course we would!
That appointment set up referrals for most of the other specialist doctors that Lily needs to see and we’ve had appointments with some already. And they’re good doctors. Miracles! Her new pediatrician is also on the ball, so I’m really happy with how things have been going. Thank you, St. Jude.

At the neurologist appointment, we upped her seizure medicine dose since we were still seeing seizures. Two weeks later, we were still seeing seizures, so we’ve upped it again. It’s been a few weeks and she’s not had one (we don’t think…there have been a few times that looked suspicious). This is such a relief. I doubt that she’s at a dose that will keep them at bay as she grows, but it works for right now, and she’s still on a fairly low dose. Life is so much easier when your child isn’t having seizures. She had another short EEG just after upping the dose, so we’ll see what that says at her next appointment in January.

I only pulled one wire off at the EEG

Lily’s sleep got a little better and is now worse again. I’m not sure what prompts it to go either way. We’re very, very tired. The sleep situation has made Lily’s PT appointments fairly non-existent, and because the PT we had could only come on Monday and had very little flexibility with the time, we have decided to try a different PT who has more wiggle room with days and times. I hope that it works out well and that Lily makes the switch again to days being days and nights being nights. It's just harder than hard to only be getting a few hours of non-consecutive sleep each night. 

Monday, November 23, 2015

Two Years Old

This year has been full of challenges, triumphs, and joys. We have been bone crushingly tired (and remain mostly so). We have spent days in the hospital. We have cried, but not as much as the first year. We have laughed. We are in awe of just how beautiful Lily is, how perfect.
I love
…how she smiles sweetly as she drifts off to sleep
…how she loves to snuggle with Daddy
…how she only pops her jaw when she’s happy or content, or to get a reaction from people
…her little coos, that are sometimes very loud!
…finding out what toys she likes
…her excitement when anyone in the family comes by
…that she loves kisses

There is a lot that you have to come to terms with as a special needs parent. Will she? Won’t she? Does it matter? I admit it is still difficult to see children about the same age as Lily doing what she would have been doing. It’s hard to see little babies doing things that she can’t. There are definitely some challenges to having a two year old that is more like a four month old. And there are joys.
I think that’s what I wish that the doctors had told us the day they gave us the Officially Official news. Yes, tell us that it looks bad. Tell us what it might mean. But then don’t leave it there and ask if we’d like to go into the other room to cry. Tell us that we will love her fiercely and that we will find the joy, the hope. That the little things she does will be cause for great excitement (even though that will sound bad at the time). That we’re going to meet people along this path who will comfort us, encourage us, and help us. That we’re not alone. No, we didn’t ask for this, didn’t plan for this. That it’s going to be hard- so so hard… and that it will be beautiful, so very beautiful.

Happy 2nd Birthday, Lily Bean. We love you more and more each day.

St. Lillian, St. Faustina, Our Lady of Loreto, and her Holy Angel, pray for her!

Thursday, November 19, 2015

To Terms and Trees

I'm pretty sure I probably had a panic attack when we were first discussing wheelchairs about a year ago. It's actually just been in the last few months that I've really embraced it (seeing how happy Lily is in it sure helps.) So when the equipment guy showed up today to pick out a feeding/activity chair that will be loaded with supports and all sorts of options that scream "I can't sit on my own" you would think I might be sad. Totally the opposite now. I am so thankful that Lily is able to get what she needs to live the best life she can, and I'm thankful that I've come to accept where we are in this life. (And we need a bigger house. All the equipment is huge.) 

 Lily looking at the trees at the playground today

Sunday, October 18, 2015

St. Jude Novena

Starting tomorrow, we will be praying the St. Jude Novena with intentions for Lily to sleep at night and for all of the medical things that need to be sorted out to be so (and for her to have good, caring doctors). Saint Jude is the patron of Hopeless Causes and Desperate Situations, and these things seem more desperate and hopeless each day for us.
We would find great comfort if you would join your prayers with ours. Thank you so very much!

Here is the link for the Novena:

You can sign up for it to go directly to your email.

Sunday, October 11, 2015

23 Months (almost)

Getting doctors switched has been the most ridiculous and frustrating experience. I need an assistant just to get this done. I wish I had known it was going to be impossible! Suffice it to say: we’ve not yet met our new neurologist and though getting a pediatrician was easy, I’ve already had to fire him. Seeing a new one on Monday, who hopefully knows his stuff, because I know mine.

Lily is still having seizures. I don’t know what else to say besides it’s hard to watch and suffer through with her. Hopefully we’ll be able to get in to see the new doctor within a month or so and try to get things figured out.

She’s doing really well with the g-tube and now has a Mic-Key button since her first tube’s balloon deflated and the tube came out. One more experience (and two trips to two different ERs) under our belts. The balloon keeping the tube in her stomach will deflate every few months and she’ll need a replacement tube then, so this is just one more thing to deal with.

We love our new PT and OT (occupational therapist.) Lily sees each of them once a week now. They are pleased with how she’s doing. She’s getting closer to sitting by herself, though she still arches back and if she has a seizure she goes rigid, so it makes it that much more difficult. We’re working on finding toys that she likes- lights, music, and vibration are winners.

Up next in the equipment department is a new chair for feeding (and just being) in. The little highchair she has now still isn’t cutting it and she needs more support. We’re waiting on the Equipment Man to call our OT back to set up an appointment.
Lily is doing really well in her stander and really seems to enjoy it, which makes us happy, since it’s good for her to bear weight and straighten her spine. I just wish it had handlebars so we could push her around easier- she loves moving around in it.

Now that Lily is over 31 inches tall, she’s officially outgrown her infant car seat, and we’ve been bracing ourselves for the switch to a regular car seat and using her wheelchair, since she still takes so many naps in the car and it’s just so easy to take out the infant seat and bring her with us. It had to be done though, and I’m pleased to say that our outing Saturday went really well. We did end up needing a new car seat since the one we had wasn’t supportive enough (a trend you may notice), but the new one is really great. She did really well out and about in her wheelchair and took a few naps in it, which gives us such peace about it being just right for her, and knowing she’s comfortable in it. Today was the first day that she used it at Mass and she did great. She stayed in it the whole time and took a little nap. We are wondering who thought we just parked a stroller in the handicap pew spot. The base is a Baby Jogger, (which is awesome! And after using a two seater stroller for the past 6 years feels really tiny), so if you didn’t see all the extra stuff she has for the chair part, you’d probably think it was a regular stroller.

The most terrible news is that she has pretty much completely switched her days and nights. She is frequently awake from midnight or 1 to 8-8:30 am, which is leaving us absolutely and completely exhausted. I don’t know what the official requirements are for sleep deprivation to qualify as torture, but I think we’re at least close to it. Really, we’ve reached our ends. If we were able to wake her up during the day, we would. When Lily wants to sleep she will either just fall asleep or cry (and throw a huge tantrum) until she is put to sleep. If she is woken up from this sleep, the process just repeats itself. She will not go to sleep if she is not tired. We’ve been taking shifts during the night but we’re really worn out.

So that’s about it for now. We’re still just taking each day one at a time.

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 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, 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!