Merry Christmas!

Home!

I apologize for not posting earlier. Sometimes it slips my mind to update the blog when I update Facebook. Waverly came home on Thursday afternoon! We are so thankful to have her home and she's doing much better. We are still being very aggressive with breathing treatments and keeping her in. She finished her antibiotic and other meds. We've been having issues with her crying a lot and being irritable, but other times she is very smiley and happy. I think it's neurological, given her twitching and such that goes along with it. She's also got several canine teeth and a couple of molars coming through so that could be contributing to it as well.

Enjoy these pictures from the day she came home!

Even more pics

Feeling very sick, feeling better, on bipap.

More pics

Bed head, sweet baby face, and sweet eyes.

Hospital pics

The day she came in and cuddles with my baby.

Still inpatient

Waverly has made some progress the past several days but she is still requiring high flow heated oxygen and therefore is still in patient. She's gone from being at 100% oxygen at 4 liters to now at 40% at 3 liters. But she still has some progress to make. She has been much happier the past two days, but almost to her "manic" phase again where she just can't seem to settle down, which leads to lots of crying at night.

We've also tried her on the bipap today while here. She did ok on that at first but then got really agitated and had to stop that and go back on the high flow oxygen.

Please continue to pray that her lungs clear up. She still has a visible (via X-ray) mucous plug hanging on and an increased need for oxygen. Pray that her brain will settle out and let her rest.

I am feeling a little better. Please continue to pray for strength and health for us. I am terribly anxious about all the sickness around here (lots of patients with the flu), and about the exposure that we are getting, as well as Waverly. Please pray for our older kids also. My oldest in particular was really sad tonight and cried when I had to leave her at home to come back to spend the night with Waverly. It breaks my heart and I hate that our family is split up. I am also trying to balance my full time job on top of it all and honestly, I am just so tired. I keep thinking that if I can just make it through this week then that will be good. I'll have a whole week off to spend with my family. We really need that time together. I feel uncertain right now as to an expected discharge date. I was hoping within the next day or two but she is being slow to let go of this high flow oxygen so I'm not sure.

Pneumonia...

Waverly has her first pneumonia...

On Thursday she woke up with a fever.  It came down with Motrin, but that evening she spiked another fever, close to 103!  Amazingly she didn't seize with it.  We gave her more Motrin, and she drifted off to sleep, but woke up a couple of hours later coughing a choking and burning hot with fever, and it was rising really fast.  It got close to 104, and she was shivering and struggling to breathe, so we prepared quickly to take her to the ER.  She then had an apnic/non-breathing seizure, and given the way she was looking with her shaking and coloring being really bad, we called 911 to get an ambulance to take her in.  That was around midnight.  We spent the night in the ER getting her stabilized and getting tests done (blood, urine, chest x-ray, etc.) and they confirmed shortly after that she has pneumonia.  It took a while for her fever to come down even with being treated here, but finally this morning it started to respond to medication.  She's now on IV antibiotics, fluids, aggressive breathing treatments, etc.  She will probably be in for several days, but already she is looking better.  She's been sleeping most of the day, and we're hoping she sleeps well for the night too. I've not been feeling well (have a cold or something I've been fighting), and after two weeks of not sleeping much due to her illness and being up all night with her in the ER, I am feeling it.  So please pray also that I can rest some and that my body will be strong to help Waverly be strong.  Thanks for the prayers!

Still Sick...

So Waverly has been hanging on to this sickness since my last post.  It's almost been two weeks now.  Still lots of coughing, secretions, some sneezing, etc.  Her fever only lasted a few days, and she hasn't had one since.  The seizures are better too, although she's had some times of seeming just neurologically agitated.  But we've seen a few smiles here and there too, so that's good!  So, it's been almost two weeks now of lots of extra care, even for her.  We've been very aggressive with breathing treatments every 3-4 hours including nebulizer with albuterol, saline, or pulmicort, vest treatments, and cough assist machine (a new machine).  There's also lots of suctioning after all that, plus anytime she coughs or sneezes.  She's not sleeping very well, so we've also been having to get up a good bit to suction her throughout the night, especially starting around 4a.m. after she's been laying down for a several hours through the night.  We're often up with her for several hours from that time on (which often means up for the day for whoever is up with her). She's also been on oxygen pretty much 24/7 for these past 12 days, ranging anywhere from 1/2 liter to 3 liters.  She also finished a course of antibiotics and is on a 5-day course of prednisone to try to help with the lung congestion too.

For about a week now she's been holding steady.  She's not getting any better, but she's not getting any worse wither.  So, we've just been keeping her at home, watching her closely, lots of care, and waiting for improvement.  We took her today for a chest x-ray just to be safe, and they said it looked ok.  So, there's the latest update.  We're praying that she can kick this bug soon and be all the way better soon!

Change of Plans-x2

I realize I have been terrible to update these past few weeks.  I'll blame it on a baby who has thrown all kinds of things at us, a full time job, a bout with appendicitis, two older kids (who are still really quite young and needy), and just daily life. 

My last update was 2 weeks ago, when we started her on Ketocal.  That very day, maybe by coincidence since she woke up this way, she was a different kid.  Super smiley, cooing lots, not sleepy, etc.  She was so cute and fun!  However, it was almost too much...she couldn't nap at all during the day, and by the time the evening came she just cried and cried because she couldn't sleep at night either.  This went on for 3 full days, until finally, that third night, in the wee hours of the morning, I gave her her seizure rescue med diastat, in hopes of helping sedate her and break the brain wave pattern that was causing her to not be able to rest.  After about an hour, it worked, and since then she's been somewhere in the middle: not as many Infantile Spasms (Praise God!), smiley during the day, but still able to sleep when she needs to (for naps and at night). 

We have noticed an improvement in her IS too, which is great.  So the plan was to have her slowly starting on the Ketogenic diet here at home for two weeks, and go to DC to get her up to full strength the week of December 3. 

Well, last Thursday she started coughing and coughing.  Then came the secretions and fever.  Then the seizures.  And she's been a very sick little girl since then.  So, plans have once again changed, and we are not going to DC now.  We feel she is too sick to make the trip.  So far, we've managed to keep her home and out of the hospital, but I feel like she is still on the brink of having to be admitted here locally if she doesn't improve. 

So, that's where we're at.  It's quite frustrating and stressful to have plans keep changing continually.  And also hard to keep everyone informed and to keep from getting confused!  I'm not sure what the plan is at this point, but hopefully I will update when we figure it all out.  In the meantime, you can pray that she will be restored to health, that she can avoid having to go to the hospital, and that we can continue to see an improvement in her seizures (once she gets over this sickness). 

Starting Ketocal

Today is the day.  We are starting Ketocal in a slow initiation of the ketogenic diet.  This was actually our original plan, as in my research I'd seen that kids tended to do better when they were able to start on the diet more slowly, allowing their bodies to get into ketosis more gradually (and just used to a different formula, etc.).  However, when she started getting so much worse so quickly, and was seizing every waking moment, we changed our plans and moved forward with the hospital admission to start the diet quickly to try to control her seizures sooner since the slow initiation takes several weeks to get them into ketosis. 

However, with me getting appendicitis and having to postpone her hospitalization to start the diet, her doctors and I decided it was best to go ahead with the original plan and go ahead and at least start introducing the formula to her.  Then, in a few weeks when we do go up to get her to the full strength of the formula, she will be fully in ketosis.  Then they can go ahead and do all the close monitoring and testing as she's on the full strength since that's the part they were concerned about her being at home anyway. 

We will also do an MRI while we're up there since her urologist wants an MRI of her spine to check if her spinal cord is tethered.  So, we will take care of both things at once.  The plan is to go up the week of December 3rd.

So these next two weeks please be in prayer as we start this process of embarking on this new treatment and starting this new formula.  Pray that she tolerates the new formula well, and that her body tolerates this process of going into ketosis long term.  Pray that the seizures respond to the treatment and that she gets relief. 

She's had several days of a high dose of prednisone, and between that and being on cipro for her latest UTI, she's been much more awake and active this week, and her seizures have already decreased.  She's not seizing every minute her eyes are open, which is a huge answer to prayer.  I'm not sure if it was the prednisone or the better treatment for her UTI, but either way we are thankful for a slight reprieve. 

Change of Plans

I am just realizing that I didn't get around to putting on here that we were planning on heading up to DC Children's Hospital on Monday (today) to start Waverly on the keto diet.  Basically, we'd determined that she'd gotten so much worse so fast that we didn't have the luxury of doing it more slowly and needed to start her sooner.  So the plan was to go up to be admitted for the week.

Well, those plans changed quickly.  On Thursday I woke up and had terrible stomach pains.  At first I thought it was anxiety and stress, but when the headache, temperature, and chills started, I figured it was a virus.  By Saturday morning I was still feeling terrible, could hardly get out of bed (which is NOT like me), and was getting nervous about the trip to DC for the week that was looming 48 hours away.  Since I needed to know what to do and if I'd be ok to be 5 hours away from home alone with a baby in the hospital, I begrudgingly went to the doctor.  He immediately sent me to the ER, where I was diagnosed with appendicitis.  I had surgery that evening, and have been home since yesterday recovering. 

That's about all I've got for now.  I am very frustrated at this turn of events, as this was NOT in my plan, but am trying to trust God that His plan is bigger and better, even if it does mean that my baby is not getting the treatment I though she needed at this moment.  Please continue to pray that we are able to figure out a suitable time to try it again, and that God would sustain her little body until then.  She's been on prednisone again which has seemed to help alleviate some of the seizures, although she still has them all the time.  Also please pray for my quick healing and recovery.  I am not able to lift her until I fully heal, so that's very difficult. 

Waverly at 18 months!!!

Our sweet girl is 18 months old today!  She really is starting to look less and less like a baby and more and more like a big girl now!

She's really had a hard time with her health lately, struggling with lots of UTIs, respiratory junk, and the return of the nasty Infantile Spasms.  So in many of her recent pictures, she's sleeping, since she spends much of her day doing that now.  But she still takes an awfully cute picture! 

Thankfully, even though she's struggled so badly with the return of the IS, she still has some personality left that we get to see occasionally.  We treasure those little glimpses.  They don't occur every day, but on the days that they do, we are so thankful.

Here she is with her "talking face" one day.

She got a super cute owl hat at the mall the other weekend.  It's perfect for fall! 

One night she was so sleepy that she didn't even wake up for her bath!

 

But she was awake this time, and enjoyed "swimming" in the tub with her neck ring.

Another very sleepy picture! Zonked out for sure!

We have been able to enjoy lots of sweet snuggles with her being so sleepy.  Most nights I sit and rock with her and just enjoy the sweet snuggles she gives.  It's a time I treasure for sure!

Waverly by the numbers:

Weight: ~22.5 lbs

Height: ~30 inches

Daily Medications: at least 15

Weekly Medications: at least 105

Treatments: 2 vest sessions, Chest PT throughout the day, up to 4 nebulizer treatments, suctioning throughout the day

Oxygen: 0-3.5 liters depending on saturations

Addendum, Ketogenic Diet Appointment, and Therapy

The last update was typed on my phone, and I tend not to be too wordy when typing on a small touchscreen keyboard. 

I will be taking Waverly to the doctor tomorrow to get checked out.  She was diagnosed with an ear infection last Sunday, and has been on antibiotics for that, after just having finished antibiotics the day before that for her latest UTI.  She literally went straight from one antibiotic to another.  :(  Her ear still looks red to us though.  We called the doctor on Friday and told him, but they said since she wasn't showing any other symptoms to wait and finish the meds and see.  Her urine has also been smelling strongly the last several days, so I'm a little concerned about that as well.  So, given her increase in seizure activity, and those two concerns, back to the doctor we will go. 

I'm honestly quite nervous if she still has an infection of either one, as it means she's getting very resistant to the antibiotics.  Of course, that's me worrying about something that is maybe not even true, so I know I need to let it go and just take what's in front of me and go one step at a time.  But it's still hard not to worry about the what if's. 

We are planning on trying the ketogenic diet to see if that helps with seizure control.  See here for more information about the diet, but in short, it's a high fat/low carb/sugar diet.  The science behind it is still unknown, but somehow it helps some children with epilepsy.  There are risks associated with it, so we will have to monitor her closely, checking her blood glucose levels, ketone levels, and blood work.  But for some children, the diet works really well to reduce or eliminate their seizures, and they are even able to reduce many of their seizure meds.  We can see a huge effect of the medication on Waverly now, as she is very sleepy, very low tone, etc.  So we have high hopes that if the diet works for her, we will be able to wean her off of some of her meds too. 

We had to go up to DC Children's Hospital to meet with a neurologist and dietician up there who will be overseeing the keto diet for Waverly.  They will work closely with her neurologist from UVA.  The plan is to start the diet on Sunday, but depending on results from this week, we will see. 

Finally, we are SO thankful for all the amazing outpouring of love and support that has been shown through our fundraising efforts for Waverly's therapy!  I don't have a full total yet, but close to $1000 was raised!  And we only did a few of the many suggested and offered fundraisers!  We are so humbled and blessed!  Unfortunately, with all of her latest troubles, we've decided to postpone any further therapy until we get her seizures better controlled.  The therapist and I both agreed that with her constant seizures and infections, it was too hard on her to tax her body more.  So, we have that money set aside for when she does get better to resume therapy.  Her therapist has been wonderful and understanding, and we can't wait for Waverly to be healthy enough to start back up hopefully soon!  We will certainly keep you posted on that.

Thanks for reading this long update and keeping up with our girl.  She's certainly kept us very busy the past few months, and we are feeling the toll.  We couldn't do it without all of your help and support, and so for that, we are very thankful!

Constant seizures

I will try to write more later, and have lots to update on, but this is just a quick plea for prayer. Waverly's Infantile Spasms have gotten way worse the past week and she is now seizing every waking moment. If she's not awake and seizing, then she's sleeping them off. And today she's had a couple instances where she's stopped breathing. She's also required oxygen more today. I'm not sure what's going on with her but I don't have a good feeling about it. So please just pray. I hope to get her to the doctor tomorrow.

Urology

This past Wednesday we finally were able to head up to UVA for Urology.  She started with urodynamics, which is a study of how the bladder is working, including pressures, etc.  Then she had an ultrasound of her bladder and kidneys.  And finally we got to see the doctor.  The results are basically that all of Waverly's anatomy and functioning are normal.  Which is good news, except that we still don't know  why she continues to have all these UTI's (6 now in 8 months).  So, the doctor wants us to start catheterizing her every day, to help her bladder drain fully, and see if that helps.  If not, then we will add a bladder wash when we cath, and finally we will add an antibiotic solution to the bladder wash if needed.  So, the nurses taught us how to cath in the office, and sent us home with supplies and nerves.  :) 

I gave Waverly a couple of days off since she'd been cathed several times that day, and tried it for the first time at home tonight.  The doctor also wants to get an MRI of her spine to check for a tethered cord, something that I've been asking to check for several months now.  I'm glad that somebody finally agrees with me to get it done.  So hopefully that will happen within the next few months. 

Sleepy girl

Not much to post as far as an update. Waverly's seizures continue to not be very responsive to the medication increases and new meds we've thrown at them (although she's had less the past couple of days). However she had been very very sleepy. She now spends most of her day sleeping. We still see an occasional smile when she's awake. I am not sure if it's due to her meds or the hypsarrhythmia or most likely both, but she can hardly keep her eyes open.

She's also been super junky in her lungs, and has yet another UTI (her 6th). Please continue to keep her in your prayers. When I sit back and think about what typical kids are like at 17 months old, running around, playing outside, etc my heart breaks as I look at my baby who sleeps most of her day and the other part of her day is spent in breathing treatments, dealing with seizures, etc.

But even at that, as I've watched a few mothers of children with Lissencephaly recently have to watch their precious little ones slip away from them, I am thankful to have more time with her.

When we were told of her condition, all the research says most children die before their second birthday. As we enter the fall and winter months ahead, with the promise of Spring on the other side, I can't help but wonder how much longer we have. Her second birthday is in May. In many ways we are blessed that she is still with us. And we see many children with her condition outliving those statistics these days. However, one of those precious children that just passed away this weekend was only 2. So as you lift up our precious girl with all her current struggles and issues, please take some time to pray for those families who are also struggling with their little ones, as well as those who no longer have their babies to hold.

Back home

Just a quick note to let you know that Waverly is back home now. She started klonopin at the hospital and will continue on that while we make plans. We got home tonight just before 9:00 and called about 7 pharmacies locally before we found one that had her prescription. Whew, that was a close one...!

Back inpatient

Waverly is back at UVA after a rough day with lots of long seizures, both infantile spasms and focal seizures where she turns blue. Johnny is with her tonight and tomorrow so I can work (yes, I started a full time job last week!), and then I'll head up there tomorrow night and stay till the weekend if she's there that long. We are looking to start a new medication for the time being while we wait for an appointment at DC Children's Hospital to start the ketogenic diet.

Not much improvement

Please continue to pray for Waverly as she battles these Infantile Spasms.  We haven't seen much improvement since we've been working on medication increases.  She is now at her max dose of the Sabril, which specifically treats the IS.  We have increased her Topamax too, which isn't specifically for IS but is for seizures in general, and she continues to have them as much as before.  The doctor isn't really keen on doing more steroids, and we couldn't until just recently since she had an infection (UTI).  We did get a few really sweet smiles out of her yesterday, but in general we aren't seeing much of them anymore, and it breaks my heart to see her struggling so much.  I hate seizures and how they steal life away.....

First pigtail!

A day (or 138) late...

Without further ado, here are the pictures from Waverly's First Birthday Party!  (Yes, from May...)

Waverly with Grammy

Getting some snuggles from Julia

So many people came out to love on our girl!

Smiles for Grandpa

Hanging out with Aunt KK

Prayers

Tasting some icing from a cupcake!  Yum!

Sister love!

Cousins meet for the first time!

Another UTI

We found out in Monday via testing they did while Waverly was in the hospital that she had yet another UTI. We are treating that now but unfortunately had to cancel our scheduled appointment and testing with the urologist in Charlottesville because the tests are dangerous to do while the patient is infected. Please pray that we are able to get another appointment very soon and that this infection responds to the antibiotics. As it is she is already getting strains of bacteria that can be resistant and hard to treat.

She's also been really junky since returning home from the hospital on Friday so we have been really aggressive with albuterol nebulizer treatments and chest pt to try to help her clear up. We'd appreciate prayers for that as well!

Hypsarrhythmia

The good news is that we were able to come home today.  Unfortunately, though, the results of Waverly's EEG show that she is not only having the Infantile Spasms, but her brain waves are back in hypsarrhythmia again.  Basically, that means her brain activity is very chaotic and disorganized with lots of spikes and epileptic activity.  If you recall last year when the IS had first started, after just two weeks her brain was so fried that she was "gone" for quite a while.  She lost her smile, her eye contact, her head control, her coos, everything.  It was a really hard thing to see.  Although she isn't quite "gone" from us yet in that sense, I had been noticing the past week or so that she's been a lot sleepier than normal, and not as talkative and smiley.  So I know the hypsarrhythmia has already affected her brain. 

The other bad news is that the neurologist said that each time the IS come back, they become harder to control.  Given that she's already close to the max dose of her specific IS medication, we are going to aggressively increase one of her other seizure meds that some say treat the IS (but it isn't typically first used for IS treatment).  We've already begun that increase with tonight's dose, and are praying for quick results. 

Would you please pray with us?  Pray that the increase in meds works, that the IS don't steal her away from us again, and that her other seizures (which we've seen more of as well) would respond to the increase also?  She also has been very junky sounding, and after this morning's breathing treatment in the hospital, has been coughing a lot.  I'm hoping that it was just that the respiratory therapist maybe went a little too far back in her throat when suctioning and irritated it, but her sats have been a bit lower since coming home and her heartrate has been a little higher too, and I'm nervous. 

Hospital

Over the weekend last week Waverly started having infantile spasms again. If you recall they are a very damaging type of seizure and are bad news. We know that seizures are part of her condition, and it's a matter of controlling them but not medicating her so much to the point that she's unresponsive. However with the IS, they are so damaging that you want to get rid of them completely and quickly. (When she started with them last year they were so bad that after two weeks she no longer smiled or interacted at all, for several months!)

As a result, her neurologist asked us to come up to UVA for EEG testing to see what's going on and what to do with her medication.

We have been here since Wednesday afternoon and after a crazy fiasco of not being put on the EEG or even getting out of the ER for over 24 hours, she is now hooked up and we are rolling. We should hear from the doctors soon and have some direction after speaking with them.

Update-therapy and bronchitis

We are just checking in to say hi and give a quick update.  Last week Waverly saw her pulmonologist (lung doctor).  It was a regularly scheduled check up with him (every 6 months or so).  He expressed concern over her breathing sounding so junky and being so shallow.  He diagnosed her with chronic bronchitis (add it to the list!) and is working on getting a "shaky vest" (technical term?) and a cough assist machine for her to help her loosen her secretions and get the junk out of her lungs.  She's sounded bad for a few weeks now, but is mostly upper airway/chest, so we are just keeping an eye on things and being proactive in her treatment so it doesn't turn into something worse.  We will also continue with albuterol and saline nebulizer treatments to help her get it up and out as well.

Her therapy the other week went well.  It's kind of a "time will tell" thing as far as how much difference it is making, but we are continuing to work with her and will see how she does over the next several weeks.  She goes again this week.  We have been running a few fundraisers to help pay for the therapy and travel to get there, and have been amazed at the response!  We are once again so thankful for the Lord's provision and for how many people are just asking us how they can help out.  THANK YOU to the many many people who support our girl and our family.  We are blessed to have you along for this journey!

Grandpa!

Just a quick shout out to my Grandpa! 

New Therapy!

We are so excited to tell you about a new therapy that Waverly will be starting this week!  We have heard about this type of therapy for some time, and even found a therapist, but she is two hours away.  That, plus the cost (it's not covered by insurance), have made us slow to move forward with the decision to try it.  But, after much prayer and thought (and many questions by us to the practitioner!), we decided to go forward with a two month trial period. 

The therapy is called the Feldenkrais/Anat Baniel Method.  It basically focuses on training the brain to form natural movements (as opposed to traditional therapy, which focuses more on just muscle manipulation).  I have been in contact with many people who have gotten this therapy with their children with brain conditions, and they have seen great results.  We are being realistic in what we should expect, but are really hoping that she benefits some from it.  Our biggest goal is to see her gain better head control (she currently cannot hold her head up on her own at all, unless she is tilted forward and can hold it against gravity for a short time; otherwise it flops straight back or to the side if she's upright).  

We are going to be doing several fundraisers to help raise the money to make this therapy possible.  Since it's not a standard type of therapy, it is completely out of pocket.  Not to mention a four hour round trip each time we go.  She will be receiving two sessions each time we go, every other week, for a two month trial (8 sessions total).  We will then decide whether or not to continue. 

Would you please pray with us as we start this new venture?  I am nervous because of the extra that it will add to us, but also feel like we'd regret at least not trying.  We really feel like it could be a great benefit to Waverly and enhance her quality of life to be able to move with more ease and be a bit more stable physically, and we are excited to see what happens. 

Blind

Sorry for the teaser back in this post when I mentioned that Waverly was blind but didn't elaborate or explain any more.  I've had several people ask about it since, and each time I am reminded that I owe you all an explanation! 

When Waverly started one of her new seizure meds back in January (Sabril), she was required to start going to eye appointments every three months since one of the most common side effects of that medication is peripheral vision loss.  We of course chose to continue with that choice of medication because the effects of the Infantile Spasms were much more harsh than the potential vision loss she could face.  So as a result, she now has regular eye checkups. 

At her last check up a couple of weeks ago, the doctor was doing his normal exam, but started to mention how she was inconsistent in her response to visual stimuli.  Sometimes she would notice or "see" it, sometimes not.  He started to ask lots of questions about what she seems to see and pay attention to.  As I explained to him, things started to dawn on me.  We've known for a while that she was far sighted.  But the things she most pays attention to involve lights and sound (faces, tv, toys with flashing lights, trees blowing outside, windows, ceiling fans).  When either of those are removed, she doesn't seem to "notice" as much.  The only exception to that is faces.  However, when she is looking at a face, often that "face" is talking to her (i.e., making sound).  The doctor mentioned a term, Cortical Visual Impairment, that I'd heard before in reference to other children with brain/neurological issues, and said he considered her to have that condition.  He explained that although we know she can see, it is unclear exactly how well she can see and how well she can actually process what she sees.  Her eyes have vision, but there is some sort of processing deficit from her eyes to her brain.  Of course, that makes sense given that she is missing brain matter! 

The American Printing House for the Blind website defines CVI as this: "Cortical visual impairment (CVI) may be defined as bilaterally diminished visual acuity caused by damage to the occipital lobes and or to the geniculostriate visual pathway. CVI is almost invariably associated with an inefficient, disturbed visual sense because of the widespread brain disturbance." 

I was fine with all of this since we know she has issues with her brain and since I'd even heard the term CVI before and knew of children with it.  But it was when he mentioned that he would fill out any necessary paperwork for services for the blind that hit me.  Services for the BLIND?  So she's blind? 

For some reason, using that word hit me differently.  It's never fun to get yet another diagnosis to add to the list.  That list is ever growing and it's almost absurd how a new diagnosis can be added at any given appointment on any given day.  We'd always joked that her eyes and ears worked fine.  Obviously that wasn't true anymore either. 

So, it's not that anything about her or her ability to see has changed, it's just been made more official.  Our baby is now also blind. 

I can hear you saying, "But I've seen her interact and notice things.  I know she can see!"  Yes, we know she can see too.  But it's just not clear how well she can see or how well she can process what she is able to see.  So, she is technically blind.

That's one thing about "this life" that is so interesting.  On any given day, at any routine appointment, you can get slammed with something that you weren't expecting at all, and all of a sudden you are asked to deal with yet another blow, even if it seems small to someone or not a big deal or seems maybe not even totally true (see the paragraph above). 

One thing we are so very thankful for is the fact that she can see some.  We know she obviously reacts to people and faces.  She makes eye contact and communicates through those sweet little eyes, with her sweet little coos and smiles.  When she was born and we got her initial diagnosis of Lissencephaly, one of my biggest prayers and hopes was that we'd be able to see our baby smile.  The Lord has blessed us so incredibly with a resounding "YES!" to that prayer, so even in light of this new diagnosis, we are thankful for the blessings He has poured out to us in our sweet baby girl.

Sick again

Waverly had a couple of seizures on Friday and just seemed not herself on Saturday. On Sunday she woke up just before 5:00 in the morning with a seizure and a temp of 101. As soon as the doctor's office was open we went in and she was diagnosed with another ear infection, and the other ear was on its way to being infected. She's felt terrible and had lots of congestion with it as well. She's on antibiotics once again (omnicef). Please pray that she will get better and for her congestion. It's always dangerous when she's junky in her chest because she can't cough as well due to her low muscle tone so the congestion tends to settle in her chest and can cause pneumonia. I also worry about her aspirating with the increased mucous and secretions. So we've been doing lots of chest PT and suctioning. The meds seem to be upsetting her tummy tonight and she's had increased neurological activity too which is driving her crazy and making her very twitchy. She's also needed more oxygen, mostly when sleeping but a little when she's awake too.

Daddy Love