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!

Monday, November 24, 2014

Lily's Birthday Party

We had a little party for Lily on Sunday afternoon. Nothing fancy, just a time for friends to play at the playground and have a cupcake (or two).
After a nap, Lily had a great time! Each time someone came up to tell her Happy Birthday, she smiled and got excited. She doesn't mind being the center of attention! She also loves to be outside, so she was quite pleased.
We're not quite ready for Lily to be eating cupcakes yet, but she did have a little taste of the frosting....and what kid doesn't love frosting?

All in all, we had a lovely time and it was indeed a happy birthday.

Pre-party nap
Mommy and Lily


Sunday, November 23, 2014

Happy First Birthday!

At 1:37 pm on November 23, 2013, Lily was dead.
At 1:37 pm on November 23, 2014, Lily is alive!

This year has been heart wrenching and beautiful. It has been pretty much exactly the opposite of what we expected it to be on November 22nd last year, yet a complete blessing, after what happened on the 23rd.

We’ve learned a lot of medical terms, met a lot of doctors, learned a lot about ourselves, our children, and our family as a whole.

We have been blessed with meals, childcare, house cleaning, Christmas presents, money, time, and prayers. We are so thankful for all of you who have cared for us, the other kids, and Lily.

We don’t know how many days, weeks, months, or years Lily will have with us. We know that every day we have with her is a blessing, and that her worth is not dependent on what she can or cannot do.

Many thanks again to the doctors and nurses that saved Lily’s life last year, and those that continue to care for her.

Though we were warned that she would be basically vegetative…she is anything but. This little girl has strong opinions, the best smile, tries hard, and loves loves loves.

Happy Birthday, sweet baby! We love you so much it feels like our hearts might burst!

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

And though she be but little, she is fierce.   
- William Shakespeare, A Midsummer Night's Dream

Monday, October 27, 2014

CT Scan, take 2

Thank you all for praying for Lily this week, with special intercession from St. Jude.
We met with the neurologist on Friday and he said we can up her dose one more time, if she has another seizure (she had one on Wednesday). We're also looking into some alternative medications, since the other two prescription medications he suggested have pretty depressing potential side effects.
We did find out that Lily has gained about 11 ounces this past week, and is now over 15 pounds! Her head circumference has also grown about a half an inch. We are very happy about this!
She has had a renewed interest in food the past two weeks and her speech therapist said Lily is doing a very good job. Lily also rolled over again, though she was unhappy once she got to her tummy. Little inch-stones, making progress.

Tomorrow morning Lily will be having another CT Scan, to check on her skull bones. She will most likely have to be lightly sedated for this, which means no food 4 hours before hand. That could mean a grumpy Baby and frazzled Mom. Your prayers are appreciated (it's at 11 am).

Happy Feast of Sts. Simon and Jude tomorrow!

Sunday, October 19, 2014

Seizures and St. Jude

This month Lily has started having two different kinds of seizures, along with the little jerky ones she has everyday. One of them has her leg muscles tighten and her feet turn into each other. It happens quickly and in a cluster of 4 or 5 times, usually after she wakes up. It has only seemed to bothered her once so far. The other type is a lot more disconcerting, as she goes blank and rigid, and either holds her breath or can't breath, for about 15-20 seconds. This has happened three times so far, again, not long after she wakes up from a nap. A trip to the ER and a call into her neurologist, and her anti-seizure medicine has been upped again. When we brought her home, she was on .51 mL, now she's up to 2.7 mL. There is going to be talk about adding/switching medicine when we meet with the neurologist next Friday.

So- today starts a novena to St. Jude, patron of Hopeless Causes and Desperate Situations. Would you join us in praying and asking for Lily's seizures to stop? All the prayers can be found here, and you can sign up for reminder emails.

Thank you!

Thursday, October 2, 2014

Prayer Request

For the past couple of weeks, Lily has been having really intense gas that causes her to cry for anywhere from a half hour to an hour and a half at a time. Often this occurs in the evening when we are already exhausted from the day. We've tried every kind of technique to relieve her discomfort, but all to no avail. Eventually she becomes so exhausted herself from crying for an hour straight that she falls asleep. Sometimes we are able to get her to burp and that will make her feel better, but again, it usually doesn't happen for a good amount of time.

Lily has also not been sleeping well on her own. She will sleep in Laura's lap sometimes for a half hour to forty-five minutes, but this means Laura is unable to do other things during that time. When Lily is laid down when she is sleeping, only five minutes later and she will wake up. To make matters worse, she is not yet able to sit up on her own or crawl around and doesn't like to lay on her back all the time, and only occasionally will she sit in a baby chair without getting upset. This means she has to be held constantly when she is awake--and she is always awake during the day.

As you can imagine, this is very stressful and overwhelming for Laura when I am not around to help due to work, class, or working on my dissertation.

So we are asking for you to please pray that Lily will sleep better and longer on her own, that her gas problems go away, and for strength and perseverance for Laura and that she does not feel overwhelmed every day.

Thank you.

Monday, September 15, 2014

Summer Update

Our main excitement: Three weeks ago, Lily got a fever and was vomiting. Though her fever had been low, it spiked the second night and she woke up at midnight and started having a febrile seizure. It was terrible. We called 911 and the EMTs were able to stop the seizure in the ambulance 20 minutes later. She arrived at the hospital wet from being doused with water and surrounded by ice packs trying to get her 103.8 fever down. Tests were run and she had a bad urinary tract infection. After being poked six or seven times trying to get an IV in her little dehydrated veins, the nurses gave up and gave her a shot of antibiotics. They were finally able to get the IV in the next afternoon on the first try, though she had still been vomiting throughout the day. More antibiotics, anti-vomit meds, and lots of snuggles, and we were coming home with a much happier Lily after two and a half days in the hospital. She seems all better now and we'll just have to be extra careful to keep fevers down and if there is any more vomiting, we'll be going in for tests and an IV before things get out of control.

Feeling better at the hospital
Chewing on her hands

After looking closely at Lily's 8 hour EEG, the neurologist determined that she is actually having seizures (small ones between 10-15 seconds). We upped her medicine pretty quickly and the seizures seemed to get worse- they bothered her more than they had previously. She's been on the higher dose for over a month now, and while she's still having seizures (between 2-3 seconds), they're back to not bothering her. We meet with the neurologist in a week and will probably be increasing her dose again. We'll just do it a little slower than before. If we can't get them under control we'll have to switch medicine. The good news is that apparently the seizures aren't causing any new damage, but are just a result of the injury.

Lily was measured for a helmet but then her measurements were just a little too good and it was denied. She was remeasured (just to make sure) and we haven't heard back yet. It feels like the ridge is getting a little flatter, but maybe we're just imagining it.
Her head circumference is pretty small and hadn't grown any at her last checkup a few weeks ago. This isn't surprising, again a result of her injury.

Physical therapy is going well when Lily is in the mood for it. She's getting better head control turning from side to side, though she still turns really quickly, or gets tired and her head gets droopy. She has a hard time keeping it mid-line. She still doesn't like to be on her belly, but is able to lift her head up well through the fussing. Lily can prop sit for a few seconds and is getting better about putting weight on her arms, but it will still be a while before she is actually sitting. She isn't very strong in her trunk, so it makes balancing difficult.

We had started puréed food with her and she seemed to really like it, taking little tastes. She was able to eat 5-7 teaspoons throughout the day, but recently has been much less interested in eating from the spoon. I don't know if I'm just timing it wrong or if it's a sign of things to come. She is still nursing well. However, she isn't gaining as much weight as the doctors would like (she was just under 13 lbs at her 9 month check up). She is getting longer though, and looks proportional, not real skinny.

Sarah likes to help feed Lily

One of the biggest problems right now is that she isn't napping well. She will sleep for a half hour if you hold her or 10-15 minutes if you try to put her down. Every once in a while she'll have a good long nap, but it's few and far between. This is exhausting for us and for her- she's just not getting the sleep she needs. She does okay during the night about half the time. It's just tiring and frustrating.

She was fitted for her hearing aids 3 weeks ago (just before ending up at the hospital), and there is some confusion as to whether she will need to have another sedated hearing test (at a hospital over an hour and a half away) or not. Each audiologist feels a different way about it and doesn't trust the ability or opinion of the other. We're stuck in the middle of it and can't get anything done- I can't believe it is this difficult. Throw in needing prescriptions from the pediatrician and a new ENT over an hour away that we'd have to see and...who knows what will actually get done.

Even though Lily is getting closer to a year old, in lots of ways she's still sort of like a 3 month old in her physical abilities and she still looks much younger than she is.

At home, she loves the vacuum and the ice dispenser. At Mass, she loves the loud organ and everyone singing- she likes to join in! She thinks we make funny faces and sounds and Danny got her to laugh when he blew on her belly. She usually just gives a smile and a little "heh!" Sometimes her shoulders go up when she does it- it's pretty funny.

 Thank you for your continued prayers!