Tuesday, January 23, 2018

Winter Update

The past few months have been ones of change. We packed up all our stuff again and now reside in Southern Maryland. Moving is hard. Moving with kids is harder. Moving out of state with a disabled child should get you a medal. The long story short is that we've got doctors set up, they seem pretty good, and now I just need to remember to make follow up appointments.

Before we moved, we talked with the neurologists about starting the Ketogenic Diet with Lily, but it got put on hold because of the move. The new neurologist and dietician here thought it would be a great idea since Lily has maxed out on all of the seizure meds she's on. Essentially, there really aren't any choices left. They realized that the typical start to a Keto Diet, which includes a several day hospital stay for monitoring, would be really hard on us, so we were allowed to do a "slow start," which means it's going to take a lot longer to get to ketosis, but we can just take it easy and do everything from home. Because Lily has a g-tube, there's not much thinking involved for me- there's special Keto formula that we're mixing with her regular formula, slowly getting more Keto and less regular formula. It's been going ok, and I think there's been a slight reduction in seizures. She was having 8-10 a day and now it's usually 4-7. I have to check her blood glucose and ketone levels daily now. We had a setback about a two months ago when Lily seemed very lethargic all of a sudden. Since we had just increased the ratio and hypoglycemia is a big concern, I took her to the pediatrician, who determined that everything seemed fine after blood tests and examining her. I decreased the ratio again and decided to give her a little bit of diazepam, which we had from two years ago when she was crying in pain/tiredness, but that we hadn't really had to give since then. The next day she seemed a little better, and after continuing that regimen, was mostly back to herself by day three. I think that her muscles have been causing her pain again and so I've kept up the diazepam with the neurologists blessing, but it's not really a good long term fix. Next up? Botox.

The effect of the spasticity of Lily's muscles seems to be increasing as she ages. They say that Cerebral Palsy doesn't progress, the brain has been injured and it's not going to get worse, but the effects will increase and become more noticeable. We're seeing that happen. Botox is something that can hopefully help her muscles to relax, which would in turn help her to relax. There is nothing easy about having to decide what to subject your child to. Everything has a side effect. Nothing is a cure-all. Her doctor thinks that it is a good idea, so we're just waiting to be told when we can come in, as she has to be put under for the procedure to be done. She'll have it done in both arms and legs.

EEG: The neurologist actually got to see Lily have a seizure at one visit, a minor miracle as she tends to have them right before or after seeing a doctor. Without quite saying it, she implied that they were much worse than she thought they were, from what I described. She has requested another EEG to see what's going on, as she suspects Lily may be having more seizures that we're not even realizing she's having. Sometimes she just seems out of it, and that could be a seizure.

Orthopedics: Met with the doctor in August and he wasn't concerned about Lily's hip (though it's still on the way out). Said they wouldn't even think about doing surgery until she was older, (I think at least 5 or 6?), unless it became dislocated before then. That doctor is retiring and so I've got to set up with his replacement.

Overall, since July, Lily has been much more quiet and still. She used to move around a lot more, "talk" often, and do well with her piano and pop-up toys. It's strange to see the change and we're not sure why it's happening- if it's just from her muscles or the brain injury presenting itself in a different way or if there are more seizures that are happening. We were told that because her cerebrum was most affected but that her brainstem was fine, we'd see a change as she got older and switched from using her brainstem to needing to use her cerebrum. Aside from that, the doctors can't really tell us anything, because she "looks" fine and all her tests come back fine. It does appear from a couple posts in support groups that this is just kind of what happens. We miss our talkative and super smily Lily, though.

And if you made it this far, and you don't know already: Lily is going to be a big sister! We're expecting Baby #6 in August. Please keep us in your prayers. I really need to have a super boring pregnancy and no complications for delivery. Not sure yet whether I'm going to try for a VBAC or schedule a c-section. The practice that was recommended to me has both midwives and OBs, so I'm going to make sure I see all of them and get all opinions. I'll be in the hospital either way and will be having a consultation with the maternal-fetal doctors because of Lily and because I'm of "advanced maternal age" now.

How are we going to do this? I have no idea. Lily is getting taller and heavier everyday, especially because of the Keto diet. I'm not sure I'll even be able to get her wheelchair in and out of the van once my belly gets bigger- it's hard enough as it is. We'll all fit in our Odyssey, but we sure could use a 12 passenger van that would be more wheelchair and big family friendly. Unfortunately, our budget for that is $0.
I know that the first six weeks after delivery will be the hardest. I'm going to need full time help for at least four or five of those weeks- I'm not going to be able to pick up Lily at all. It is good to know that the other children will be able to help out with holding the new baby, though. We've never had older kids when we've had a new baby! When Lily was born we had a 5, 4, 2, and 1 year old. Now we'll have a 10, 9, 7, and 6 year old to help. I guess I've got until August to train them to do all I do!

Thank you for your continued prayers!

In April

Easter 2017

A trip to the Bay in September

A happy moment in December

Merry Christmas 2017

Thursday, February 16, 2017

February Update

Several months ago Lily was seen by the orthopedic doctor for a follow up regarding her left hip, which is slowly making its way further from her hip socket. The doctor was very concerned and wanted us to see the orthopedic surgeon in February for a consultation. She was pretty sure that Lily was going to need surgery… a surgery that involves cutting the top of the femur and reattaching it with bolts and things, to get it to fit into the hip socket. This has weighed heavy on my heart since then and I could barely even think about it without starting to panic. 

We met with the orthopedic surgeon this past Monday. He walked in the door and the first thing he said was “We treat people, not x-rays!” Good sign. After examining Lily, he made a comment about not quite understanding what the other doctor was talking about- that Lily seems to be doing pretty well. Then he said that she wouldn’t need surgery. I wasn’t prepared for that and waiting a second, hoping I actually heard him say that. He said it again! She wouldn’t need surgery, at least at this point in time. I told him that I really liked him. What an enormous relief! He even said not to come back in 4 months- come back in 6 (and see him, not the other doctor)! 

A day I was dreading turned into a much better day. We’re going to keep working on getting her femur to do what it’s supposed to by using her stander and stretching her legs. 

Since Lily turned 3, she no longer qualifies for the early intervention services she was receiving. We got a certificate congratulating her (on turning 3?) and a book about when to call the doctor if we think that she’s delayed in not doing things three year olds do. The book went in the trash. I get that they send those to everyone, but when her paperwork says “presents at 3-5 months” over and over again AND they know us…we probably could’ve done without another reminder. At any rate, that means that she’s now a public school student. She’s not going to school in any sort of way, but that’s how she’s now receiving therapy services. There was debate at first about whether we’d have to go to the school for the therapy, but because of her seizures and ridiculous logistics, they’re coming to us. Lily was getting an hour each of physical and occupational therapy every week with the early intervention, but now that she’s been transferred to the school system, she’s going to be getting 20 MINUTES of physical therapy a week and 30 MINUTES of music therapy twice a month. I just don’t even totally know what to do with that. (But she really likes the music therapy, as do the other kids.) 

Lily’s been been pretty healthy aside from the first week in January when she looked like this for a few days while she battled double ear infections and what could have been the start of pneumonia. 

Then the other week when she had a weird seizure in the morning which prompted emergency meds and an ER visit, which turned into a couple of days of her being pretty out of it. That’s all passed now and hopefully she can stay away from whatever else is out there. 

We also saw her neurologist last month and since she’s at the upper level of all the seizure meds with very little improvement, we were told to look into the Keto Diet. We’ve got their first available appointment- at the end of May. Sigh. 
For now we’re just keeping on. 

This is her now:


Saturday, November 26, 2016

Lily is 3!

Lily turned 3 on Wednesday! We are so thankful she is here with us. We are also so very thankful for your prayers and support for her and us these past three years. Really and truly.

If you could, would you offer a prayer for the repose of the soul of Dr. George, the OB who delivered Lily? He died in April from cancer. We will forever be grateful for his quick work. Please also pray for his widow, Samantha, who was my midwife (and thankfully there to help Danny, too), and his daughter, that they may be comforted. Thank you all!

Saturday, November 12, 2016

November Update

The past 9 months since our last update have been so full of changes every which way that it seems like it's been more than a year. It's been exhausting!
What's been going on with Lily?

She's doing a bit better with being on her tummy and seems to like looking at herself in the mirror while laying on the Boppy. She finds it uncomfortable to be directly on the floor because of her g-tube, but the padding of the Boppy or her wedge pillow make it bearable for a few minutes at a time. Still working on getting her to put weight on her arms to prop or push herself up. She has to work pretty hard to get and keep her head up. And since we're speaking of it, her head has grown a centimeter! We take what we can get!

Selfie with Biggest Brother

We have been adjusting her seizure medications like it's going out of style. We dropped one while adding another, and then started to add another, but stopped, while adding one that we only use if she's had too many seizures in a day and don't seem to be slowing down, and then adding back the one we stopped while decreasing another. Got all that? And it's not really working. There is one medication that seems to be doing the most good work, the one we started in May. But...she's still having seizures. Sleep seems to be a pretty big factor in it all and so we've adjusted our lives a little bit to make sure she gets the naps she needs.

Just too tired!

Speaking of sleep, in May, when we started the new medicine and dropped the old (which we've since started again, in a very low low dose), Lily's sleep pattern changed dramatically. She used to fall asleep with us rocking in a chair, but all of a sudden she didn't want to. She wasn't tolerating her last feeding (usually around 8 or 9) and would fuss and cry and then most of it would come back up. If you're friends with us on Facebook you might remember that we were having a terrible time trying to figure out what was wrong with Lily. She would wake up and then a half hour later be screaming screaming screaming...which wasn't something that she had done in a long time. We had no idea what was wrong and neither did any of the doctors. And then one day, I just decided that as soon as she started to fuss, (and hopefully before the real screaming started), I'd bring her back to bed, even if she'd only been up 10 minutes. Holy moly. Little lady was just so tired. So very, very tired. After a week of doing this, and her getting more sleep, she was so much more content...and seemed to trust us again. It seems like such a fail to have not seen that this was the problem, but she didn't always scream when she was tired. Sometimes she was just quiet and tired. But the other times....whew. Since we've figured it out, life has been so much better for all of us. She's started to go to bed earlier, around 8, when it used to be 11 or later. She's sleeping great at night and is pretty good about falling asleep by herself, though I enjoy cuddling and having a snuggle for a few minutes with her.
Because of her going to sleep earlier, she's missing her last feeding. There have been a few times when I've tried to give it to her, but she clearly doesn't want it and so we're just going with what she says. She hasn't lost any weight, but she hasn't gained, either. We're going to be starting to transition to a real food blended diet and I am hoping that that will enable us to get her the calories and goodness that she needs.

With Littlest Big Brother

There are some other things that have been going on and coming up but we'll save those for later...for now, we're just thinking about how soon Lily's birthday is! 

Passing out candy on Halloween

Tuesday, February 2, 2016

What's Been Up

You can still say Happy New Year on February 2nd, right? I hope so.

2015 ended with sickness for everyone in our house. Lily started throwing up all of her tube feedings two weeks before Christmas. She was in good spirits otherwise and was sleeping great, so we didn't know what was going on. UVA fit us in for an appointment the day I told them we were just going to go to the ER and they did a barium study. Everything emptied fine from her stomach and the doctor didn't see any blockage (it's so interesting to be able to watch it happen!). "You're not staying for surgery, but I don't know what's wrong," he said. Her GI doctor couldn't figure out what it could be, either, but upped her stool softener (which has helped). Of course, the next day she didn't throw up anymore and started to get the cold that the 4 year old had started a few days prior. We ended up with 3 ear infections, 3 cases of pink eye, and one of strep throat. We're all finally better, but it's been hard.

At our last appointment with GI and nutrition, we talked about increasing Lily's feeds and we were doing well until she got sick. She went from 105mls to 50mls, mixed with 50mls Pedialyte. So then we had to work our way back up from there. She's now made it to 115mls and is doing well with it. We'll probably try 120mls next week. We also got a feeding pump. She had been fed from gravity bags that hang on an IV pole, and that was fine for when we were home or going to someone's house and we could bring the pole with us, but not for just being out and about. The bag would either have to get taped up on a tall piece of playground equipment (we are a sight wherever we go) or we would have to hold an open 60ml syringe, hoping that she wouldn't knock it over or that it wouldn't just come out on it's own. It also meant that we had to stop what we were doing and sit for an hour, which is totally doable with four other antsy kids. Now that we've got the pump, we can just attach it to her wheelchair, hang the bag a little higher on a hinge on the chair and keep on going!

Cuddling in bed

Seizures started up again at the beginning of December. First just one every couple of days, and then one just about everyday, and then multiple seizures everyday. Seizures are an excellent way to go from good day to bummed out day. We just added a new medicine this past week, since we've maxed out on the other one she's on. It will take 4 weeks to get to the dose the doctor wants her on, so it will probably be a little bit before we (hopefully) see improvement.

Lily got new SMOs, which help keep her ankles stable when she's in the stander. Of course, the next week we saw the Orthopedic doctor, who recommended that she get AFOs, because her range of being able to flex her foot is already getting smaller. We'll have to wait 6 months before the insurance will pay for new ones, so in the meantime, we're just trying to keep her flexible. Lily had a x-ray of her hips made and the doctor said that her left hip is already starting to come out a little bit. Apparently as you learn how to crawl and then walk, the top of your femur goes from straight to an angle, to fit into your hips (and keep your bone there). When you don't crawl or walk, your bone doesn't make that change and is more likely to come out of the socket (and be very painful). There isn't anything we can do to stop this and the solution is surgery, which involves breaking the bone at the top and using plates and screws to put it how it should be. I had to sit down. It won't be soon, but they're going to keep a close eye on her hips and we know that the surgery will be sometime in the future.

In the past few weeks Lily has seemed to be more alert and interactive, despite all of the seizures. She has tried to reach for toys (she holds her arm out straight and does her best!) and seems more interested in toys than she has previously. Her neck seems to be getting stronger, too. She can do little crunches and her head doesn't fall back like it had been when you pick her up from lying down. So that's good!

A little smile while on her tummy! A miracle!

We just received a light box and blackout board (basically a science fair board covered with black felt so that the child can concentrate on one thing at a time on a plain background, but for special needs, so it costs $$$$). We didn't receive all of the special things to use on the light box yet, though, so we haven't really used it yet, but I'm looking forward to this week when the vision therapist comes and shows us what to do. Lily likely has cortical visual impairment and these tools will aid her.

We're still waiting for her new high-low chair to arrive, but now that we're in the third month (of hopefully just three) of waiting, maybe one day soon we'll get the call that it's on it's way. We're also waiting on a new chest harness for Lily's wheelchair that won't cut into her neck, so...any day now would be great! It's so very frustrating that the special needs world takes forever and costs so much.

Lily still loves people the most and it's like Disney World to her at Mass when everyone is coming back to their pews from Communion, passing her. She gets so excited and it's really cute...and loud. She can squeal like the little girl she is when she gets excited!

Lily and Sarah

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.