Hip Saga

Monday before last, Lily started to fuss and cry while having her dinner. This is not usual and we were immediately worried about her hips which we've been watching. We decided to take her to the ER here in town where they said that her hips didn't FEEL dislocated but they did an x-ray and the hips didn't look right to the doctors. They called Children's Hospital in DC, (we go to Georgetown, so I'm not sure why they decided Children's), and they said we'd need to be transported by ambulance there to see what was going on. Lily slept through it all and we got to Children's at 4 am. By 6 am we were being discharged. The (very new) orthopedic resident I talked to told me that the ER only told him that there was a 4 year old with dislocated hips, which is what prompted the ambulance. They never told him that she has Cerebral Palsy. Oh, well. I was to follow up with our orthopedic doctor, (who has been doing this for I'm sure longer than I've been alive), to see what was next.

We did that this week on Tuesday. He had another x-ray done because the one from the ER wasn't in the system and I didn't think to take the extra CD that the ER sent to Children's. He confirmed that Lily's hips aren't dislocated -yet- but they're still on the way...and not where they should be at any rate. He's going to talk with the orthopedic doctor who does the surgeries now and get back with us next week. In the meantime we're just supposed to keep her comfortable with Ibuprofen and Valium. That's fine for the short term, but I'd rather get the surgery done and out of the way before the new baby comes and life is even more chaotic than it is now. It would be ideal to have it during Spring Break, the week after Easter, so that Danny didn't have to take any more time off.

Usually the femur bends into the hip socket like this. Crawling. standing, and walking make it do this.

Because Lily can't crawl, stand, or walk, and because her muscles are tight and pulling on her femur, her hips look like this, facing the wrong way and bending outward, away from the hip socket. This is what caused the panic and confusion in the ER from doctors not used to dealing with Cerebral Palsy.

Lily is sometimes okay while sitting in her wheelchair, but we can tell it's not comfortable for her. She keeps her right leg up- you try sitting with your leg lifted for longer than 10 minutes. She just can't relax it enough. We've been propping her up on the couch to have her food and that seems to be alright for her, as long as she's not putting too much pressure on her right side. It works for now, but again, we've got to be able to get back to real life and ease Lily's pain soon.

On Wednesday we went back to DC for her nutrition and neurology appointments. We decided to decrease her calories a little bit because she's gaining weight pretty quickly since being on the Keto diet. This also means that the Keto ratio is increasing, getting closer to ketosis and hopefully seeing a decrease in seizures.

Lily has to have blood work done every few months to check the level of one of her seizure medicines. At the blood draw last week she was dramatically lower in the level than she had been previously. Because of weight gain and the Keto diet helping her to metabolize her food and medicine quicker, it was determined that we should increase the level of that medicine and then decrease and eliminate one of the others that never seemed to really do anything. After we drop that one, we'll try another one. That'll be medicine #6 that we will have tried. (She's currently on 3, plus the Valium, which is technically a lower dose of her emergency seizure medicine but also acts to help her muscles reduce tension). We're on day 3 of the increase, (we're adding 1 ml in the morning for a week and then another 1 ml in the evening), and if I dare say it, I think it's helping. She's even moving around a bit more today than she has been. So that's good!

We're heading back to DC on Monday for an EEG to see what's going on when Lily is NOT having seizures, but I do hope that she has one or two while we're there to see what the seizures are like now compared to her last one over 2 years ago, since they seem to be evolving a little.

I'm getting pretty good at driving in DC because of all these appointments. We've got Botox scheduled for the 23rd and we'll have to get to DC somehow (miraculously) in morning rush hour traffic before 8 am. That one's going to be tough. Almost considering getting a hotel closer so that we don't have to leave at 5:30, or earlier. The neurologist thinks that the Botox will help with Lily's hips, since part of the problem is that the spasticity of her muscles is what is contributing to her femurs being pulled out.

Now you're pretty well caught up. One big help to all this hip mess is that Lily doesn't mind her car seat, or at least she seems better in it than in her other chairs. At least we've got that going for us!

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

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:

-Laura

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!

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?

Easter

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

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

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!

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. 

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!

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

St. Jude Novena

Friends,
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: http://www.praymorenovenas.com/st-jude-novena/

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

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.

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!

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.

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

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