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!

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