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!

Thursday, December 25, 2014

Merry Christmas!

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

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

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


Monday, December 1, 2014

Coming up next....

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

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

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

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

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

As always, thank you for your continued prayers!

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!