Visiting Dr. Wendy

Let me start off by saying that I love Dr. Wendy.  We could not be blessed with a better pediatrician.  She listens, she knows our family, she genuinely cares about Sadie's welfare, and she gives me hugs at our appointments!!!

When Wendy walked in the room today the first thing I said was, "we have LOTS of good things to tell you!"  Her eyes lit up and she goes, "great, I want to hear ALL of them!"  And I knew she meant it.  Even though she was a half hour late getting to us, I knew it was because she spent this kind of time with all her patients, and I knew she wouldn't make us feel rushed even though we were probably the last appointment before her lunch break.

I told her about Sadie's new sleeping habits, we brought the Happy Chair, so I showed her that, and I proudly showed her Sadie's beautifully healed stoma (her gtube button hole).  It was such a great way to start off our doctor appointment, when so many times before it hasn't been this good.

Then I got down to the two major important things I wanted to talk to her about: the swallow study, and Sadie's eating/calorie intake.

I brought up the swallow study.  She said, "yeah, it looks like they want her to eat little bits throughout the day."  I said, "but she aspirated on the thicker consistency more than the thin one..."  She admitted she hadn't read that part.  I told her about my frustration and how they made me pull Sadie out of her routine and then expected her to act the same as she does at home.  I told her that I was disappointed in how bad the test made Sadie look, because I know she can eat better than that.  Then I said that our feeding therapist recommended another test in 3 months just to establish a history and some kind of baseline, but that I'm a little hesitant to do it again.  Wendy goes, "What is the swallow study helping us accomplish with Sadie?  Is it giving us any important information that is helping us further her development?"  The answer for both of us was no.  She told me she thinks we're at a critical point in Sadie's development and we shouldn't be putting LESS in Sadie's mouth and more in her tube...especially since she WANTS to eat.  I agreed.  We also agreed that since Sadie has never been sick with pneumonia (or really anything) and her lungs are perfectly clear everytime she checks them, she's not worried about what the swallow test says.  She even went so far as to tell me she doesn't care if we ever have another swallow study ever again.  Because Wendy knows that Sadie doesn't test well. On paper my child is a completely different person.

So, then I brought up that Sadie's been getting all her meals orally, except for first thing in the morning. We tube feed her before she wakes up to get her blood sugar up since she's been asleep all night.  I told her I pay attention to her protein amount, and her fluid amount, but I'm a little worried that she's not getting enough calories.  We looked at her weight from today, 27.3 pounds, on the growth chart.  She said she's still right there around the 50th percentile (although she's fallen a TINY bit below it) and that she's not concerned one bit about her weight right now.  We also talked that according to her height she should be in a little higher percentile, but that she's probably predisposed to be tall and skinny seeing as Brian and I are both just that.  I asked her about prescribing a calorie enhancer such as duocal, but she wasn't comfortable with that just because she doesn't know what all the options are out there for things like that and she wanted to make sure if we did get one that we got the right one for our situation.  We concluded on that front that we'll see GI in about 3 months and weight check again and then talk to Dr. Pasternak about that if we/he feel like Sadie could benefit from it.

But then here's the best part...

I told Wendy that since she and GI want Sadie weighed about every 3 months, that I figured I'd alternate between them, so I'd end up seeing each doctor every 6 months or so.  So she goes, "okay, so see Dr. Pasternak in about 3 months and then come back to me in 6 and we'll talk."  I said, "...in 6 months I'm going to be REALLY pregnant..."  She was like, "Oh!  Well, then come back after the baby is born and we won't worry about it too much..."  So, I asked her something I had thought about but hadn't planned on asking..."can we bring our new baby here to this clinic?"  She said for sure we could.  I said, "can the new baby see you or do we have to see a different doctor because you're special needs?" She told me she'd see both our kids and she'd do well checks together!!!

We made a plan that I'd call once the baby was born and make an appointment to weight check Sadie and have the new baby's first check up all at the same time!!  And now I don't have to worry about finding a new pediatrician, having 2 doctors to call/keep track of, etc.  And since Wendy already knows our family and we already love her, it'll work out perfectly!!!

Yay Dr. Wendy!

What about your kids's doctor?  Do you like him/her?  What is it about him/her that you like so much?  Would you recommend him/her to your friends?

Sadie's 2 year well check

It's sort of strange to think about that it's already been two whole years since we were in the NICU, since we met Dr. Wendy, since we thought our baby was going to die. But, I was always told when I had a baby that time flies...and I'm not really sad that it has.

Sadie and Grammy and I went to see Dr. Wendy today for Sadie's two-year-old well check. And there was no car screaming. And there was no nursing in the lobby just to keep her quiet. ANd there was no wrestling the stroller through doorways and down halls (the wheelchair maneuvers like a dream!!). And there was no stripping her down and laying her on a scale stark naked and screaming. And there were no shots. And I started thinking that maybe I can handle this!!

Sadie still isn't feeling completely 100%, but she bucked up and did a good job. We weighed her @ 27lbs. We thought this might be a little light...but she has been sick for the last couple of days. Even so, she's still holding strong in her weight percentile!! We measured her length too, but I didn't take note of it...somewhere in the 40s? I don't always rely on a perfectly accurate length measurement because Sadie doesn't lay flat usually, so they have to pull her legs, which results in her head moving down, which I'm supposed to hold against the wall, but I never can do it perfectly. So who knows how long she REALLY is! haha

I've heard rumors that Dr. Wendy is the only special needs doctor now at this clinic, so since it's a teaching hospital, we always see a resident first. I guess it helps Wendy out a lot, but it's sort of annoying. Because they don't know us, and it's a lot of work to explain everything to them and then have the same conversation again with Wendy when she comes in later. I know they need practice, so whatever, but it's still annoying.

The best thing about this appointment was learning that Sadie's lungs and ears are clear. Having her be sick with a cold (really for the first time) I was a little worried about these 2 things. But it's just a cold. And the doctor, who was a little over cheerful for anyone's good, assured me that what's going around shouldn't last longer than 5 days, even though that snot might stick around for a couple more. (I can already tell that Sadie's feeling better!)

When Wendy came in, we mostly talked about her authorizing that Sadie could benefit from an hour of speech each week (in addition to her feeding therapy), and the letter from the OT about getting a swing. And Sadie was good enough to show off her independent sitting, which Wendy was amazed by.

We have a big girl. A healthy girl, and even though we need to come in and have somebody check Sadie's weight every 3-4 months, we don't have to have another well-check for a year! There was even talk about having well-checks in the summer since Sadie's birthday is during RSV and flu season. Now THAT'S a good idea!!

And on to a new year and new things!!

Thanksgiving Day 4

Last night, Brian gave me a scare. He called me from El Paso to tell me that he would get a call today letting him know how a restructuring in the company would effect his position. He was told that everyone would have a job, but some may be demoted or relocated, and some positions may have different responsibilities than they did before. He was worried that he'd be asked to relocate to Las Vegas, because there are 5 or 6 people that are here in Phoenix... only 1 person works in Las Vegas. All evening we texted back and forth fretting about what kind of news he was going to get today, and it came down to me saying that if he was asked to work in Las Vegas, he'd have to commute. I can't leave Phoenix, not now, not after I've worked so hard to establish all these fantastic resources here for Sadie (and me) and our family.

To start with, we have an AWESOME pediatrician. We attended a conference at Phoenix Children's Hospital a couple of weeks ago, specifically about cerebral palsy, and our pediatrician (Dr. Wendy) spoke about primary care. Her focus was on coordination of care, like being at the head of everything and managing all the appointments with specialists, prescriptions that are written, and changes that are made in the management of care. When the question and answer portion of the morning came, people raised their hands and asked her, "how do we get our pediatrician to do that???" I didn't realize that other doctors DON'T do that. We've always had Wendy and Wendy's always been our contact person for everything. I can email Wendy anytime of day and she is always good about getting back to me within hours...even if it's a Sunday or she's on vacation. When I needed to change something for Sadie regarding GI, I contacted Wendy because contacting the GI doctor would mean leaving a message for the nurse who then would leave a message for the doctor and it could be an entire day before the nurse got back to me (if I was able to take the phone call) and then the answer probably wouldn't make sense because the doctor didn't understand the question. But Wendy was able to take care of the whole matter, including communicating with the GI doctor, within 48 hours. I've emailed her pictures of a rash or what I think might be an infection so she knows whether we need to come in or not, she calls prescription refills in to the pharmacy when I ask, and she gives me hugs (especially when I cry). I feel like she's more than my child's doctor, she is my friend, and Brian and I's partner in this business of raising a special needs child.

Sadie has 5 therapies a week. She sees a developmental vision therapist from Foundation for Blind Children on Tuesdays. Thursday mornings she has occupational therapy who works on sensory issues and spends a lot of time focusing on Sadie's hands (fists) and putting weight through her arms. Friday mornings Sadie has feeding/speech therapy. And Sadie sees the physical therapist twice a week on Wednesday and Friday mornings. When we got approved for these therapies, Annie, who works at the Dept of Developmental Disabilities (she's our coordinator from the state) sent me a list that was like 90 pages long. I weeded through that list for days, calling everyone I could to find therapists that were home-based. Sadie screamed in the car and it was unrealistic for us to go to therapy. But, we live in some kind of therapy black hole and many don't come to our specific neighborhood. We do travel to go to PT (which Annie told me we were lucky to even HAVE PT at Sadie's age), but everyone else comes to us, which makes my life so much easier (right, like my life is easy).

Our PT, Tami, doesn't come to our house, but she is worth driving to...and when we move, I plan to continue to make the 45+ minute drive to take Sadie to see her twice a week. Tami is not just a therapist, like Dr. Wendy, she is also a friend. She is a huge advocate for special needs children in our community, and she's like a "lending closet" and never hesitates to let us borrow something indefinitely. Tami is the one who introduced us to the Chill-Out Chair and let us borrow hers for like 6 months until we were able to get one of our own. And recently she gave us a high chair that someone donated to her because their kid had grown out of it. She is generous and kind and has such a positive outlook for Sadie's future. Tami gave me hope in the area of potty training. Tami keeps me positive about Sadie walking. Tami takes time out of her schedule to attend our other appointments like wheelchair fittings, and the spasticity clinic. Everybody knows Tami and everybody likes Tami and I feel lucky to have Tami in our lives. I would hate to have to leave her.

There are a number of amazing things we have access to just because we live in a big city with a very prominent children's hospital. There is The Foundation for Blind Children with all its resources and programs. There is United Cerebral Palsy, which has a childcare facility set up for special needs children. I'm hoping we can start taking Sadie after we move just so she can be around other kids a couple of days a week. We have a ballet company that includes all children, special needs and typical and puts on fabulous productions that use everyone no matter their ability (watch a video here). And there's the ADAPT Shop, which we're just learning about. The ADAPT Shop is through Southwest Human Development and provides low-tech solutions to those with physical challenges. We're hoping to get something called a Happy Chair through them soon. This is a chair that is built according to Sadie's size and needs that will support her where she needs it, but also encourage her to sit independently. I'm really excited to be taking part in this program.

Before we had kids, we discussed someday moving out of Phoenix, but things are different now, and you can see why it's beneficial for us to stay here. And these just scratch the surface. There are friends, other families, respite providers, events to attend, etc. Sure, things will change when we move across town. We'll have some different therapists and things, but I know enough people now to ask for referrals so that I don't have to wade through another huge long list of names of authorized agencies.

And in case you were wondering and waiting to hear what happened with Brian's job, he got the call and we're not moving to Las Vegas. His job changed a little, but as far as anything that effects me, or our family as a whole, everything's the same...only he'll probably be traveling less, which means he gets to be with us more often. So, we move forward with our plan to live here for the rest of our lives.

18 mos check up

Sadie saw Dr. Wendy today and I think this was our first well baby appointment that didn't involve ANY screaming! We had 16 mos of car screaming and I am SO GLAD we're done with that. Now when we go places I think Sadie actually enjoys being in the car.

Dr. Wendy continues to be impressed with Sadie. Remember, we first met Dr. Wendy in the NICU, so she REALLY knows how far Sadie has come. She looked at Sadie's G-tube and was very impressed with how healthy it looks. She said it might be the best one she's ever seen so fresh. That makes me happy. The thing about Sadie that always amazes me is how healthy she is. She has been sick maybe twice, she heals up from cuts or scrapes and things. She never gets bruises. She is just really healthy.

Sadie got weighed and measured and she's back on her original weight curve, the one she was on when she was born. So, we're really happy about that! And she's in the 75th percentile for height!! So, those of you who comment on how tall she is all the time? You're right! She is long and skinny. Her head is not really growing very fast, but it is making its own curve that is paralleling the normal curve...it's just WAY below the charts. It's okay though, we're happy with the head we got and we love every LITTLE bit of it!!

We talked about all the things Sadie is doing. How she can almost sit, and she can get her (left) hand to her mouth. I told her that she is very good at communicating, and that when her mouth doesn't hurt, she can eat 5-6 oz of food (even though she still won't drink)! She sleeps all night, and even though she hasn't since we've been home from the hospital, she has been pretty good about taking naps. She has gotten all her teeth except her fangs (top and bottom) in the last 6 months, so that's been hard...but she looks like such a big girl.

We asked for a prescription to attend PT twice a week, because I feel like Sadie is at a place where she can finally really participate and benefit from therapies. Dr. Wendy was glad to write that. We also talked a little about a Kid-Cart, which is like a wheelchair stroller. I think that's going to be our next big piece of equipment.

Dr. Wendy said as long as GI was keeping an eye on her nutrition and tube and we didn't feel like we needed anything, she'd see us again when Sadie's 2!! Can you believe Sadie's going to be 2 in less than a year?! It seems like just yesterday when we were coming home from the hospital with this bundle that wasn't supposed to make it even a couple of days. Yet, so much has happened and we've come such a long ways that now we're facing 2. Wow.

NG follow up

We saw Dr. Wendy yesterday to follow up on Sadie's NG tube placement. I love that we have such an awesome pediatrician because not ONCE did we see a G.I. doctor in the hospital, and our follow up isn't until July 13...almost 2 months after Sadie's admission (May 22). But our pediatrician, who is super busy and I couldn't schedule an appointment with, squeezed us in at 8:30 in the morning on a Monday.

She was pleased with everything I had to report. And Sadie weighs 20lbs 7oz!!! I told Dr. Wendy that Brian and I had discussed it and we feel like since this tube has been such a positive thing for Sadie that we should start talking about a G-tube. We feel like this is going to take more than a couple of months before Sadie will be able to eat enough to sustain her own growth, and rather than prolong the misery of throwing up her tube and having to re-insert it, or risk the danger of ripping it out everytime we pick her up or move her somewhere, we'd like to just have the surgery to place the G-tube. I am also very interested in getting Sadie nutrition from real foods, and not just pediasure, and to do that she needs the G-tube. Dr. Wendy said she completely agrees and she'll push the referral through right away.

We have a surgical consult scheduled for Friday morning of this week.

I will keep you posted as I have more information.

Sadie's weigh in

Today was Sadie's weigh in appointment. She passed. With flying colors.

Some background...at Sadie's 12 month appointment she had fallen off the charts in the weight category. She weighed 17lbs 6oz. She wasn't just going down in percentiles, I think she had actually LOST some weight from her 9 month appointment! We were told, "come back in a month and weigh in, let's hope she's gained." It's actually been about 6 weeks, and we've learned a LOT about Sadie in these 6 weeks.

1. Sadie has no problem eating. She does, however, having an appetite problem. When she's hungry she can pound 4-5 ounces of food! But 3 hours later, when you'd think she'd be hungry again, I have force her to eat an ounce and a half. This leads me to believe her GI isn't moving like it should.

2. Sadie still pukes little spit-ups once or twice a day. It's not like a gigantic exorcist puke where her head spins and her eyes shoot out lasers. It's more like a burp and food comes up with it...like spit up, but with apricots and yogurt, so it smells worse. This is more evidence that leads us to believe her GI isn't moving like it should.

3. Sadie eats generally 10-12 ounces a day (this is a lot less than a normal baby her age) and about 350-450 calories (again WAAAAAY less than a normal baby this age). She nurses, but not a lot. And most of her calories are probably from oils, pure fat.

4. Sadie is dehydrated. Since she's not nursing a whole lot (mostly by her choice *sad lip*), she should be drinking water, but she still struggles with the sippy. When she gets it, she gets it. She can suck and swallow just like nursing if she really tries. But most of the time she doesn't try. So we resort to squirting it down her throat, which leads to choking, which can sometimes lead to puke...then we've just defeated the whole purpose of it all in the first place. Maybe Sadie needs her water thickened? But I'm not sure if that will encourage her to drink. This problem still baffles me.

5. Sadie will not eat unless it's just after she's woken up from a nap. We now have a pretty consistent schedule to where she gets 3 little naps (usually less than 30 minutes) throughout the day. These serve to reset her and to calm her enough that she can eat without too much struggle. I'm not sure she's really learned what hunger is, maybe she doesn't ever feel hungry? She doesn't seem to ever indicate when she is hungry, and it's really hard to feed her if she hasn't cat napped first. Again, I'm not sure how to solve this problem.

Today was the first day in over a month that I didn't write down every ounce of food or water that Sadie has eaten. It felt so good. I didn't even add oil to every meal. I didn't stress about it at all. She drank more water in one sitting than she has ever (almost 2.5 ounces), and she ate all four meals that I fed her without a problem. I don't know how much she ate, I don't know how many calories it was, I'm not even sure what time it was that I fed her. And it feels so good to say that. I can now relax a little about this.

So, how much does Sadie weigh? Today she weighed in at 18lbs 13oz!! She had gained about a pound and a half!!! The doctor was so happy, we were so happy, it was a victory for special needs mommyland. But we're still going to go see a GI doctor. We don't know why she's not hungry, do we need to push things through her system? Or do we just need to stimulate her appetite? And we don't know why thinner foods/liquids are harder to swallow. So, tomorrow I call GI and schedule an appointment. Dr. Wendy prepared me. And I know a little what to expect. She's totally supportive and always stands behind my decisions of what I think is best. She understands our reasoning behind our vaccination decisions and our medication decisions and she understands that we don't want to put a bunch of artificial preservatives in our baby just to get her to eat or gain weight. So, she's sending us to GI, but she's not abandoning us. She even told me that I can call her and talk anything over with her before I make a decision about a medicine or test or procedure or anything. I wish everybody had a pediatrician like Wendy!

Thank you everyone who prayed for us. Thanks everyone who supported us and encouraged us. I feel like we've reached a milestone...on to the next one! (car screaming?)

Sadie's 12 month checkup

We saw Dr. Wendy yesterday. Sadie had a good trip to the dr. No car screaming at all...and then she got fussy about when we walked through the door of the building. But it was nothing a little nursing couldn't cure. I love when you're 10 minutes early for your appointment so you think you have a little time to sit down and nurse your baby in the lobby, then they call you back early. But when you're late...then they make you wait. So backwards!

Sadie got weighed and measured and then we went over what medications she takes and how much she gets blah blah blah. When we finally saw Dr. Wendy, it didn't surprise me the first thing she said, "do you believe her weight? Do we need to reweigh her?" Nope. She's skinny.

Sadie barely weighs 18 pounds. And she's been at that weight for about 4 months. 4 months ago it was fine...but everytime we've come back to see the dr. she drops on the charts for weight. At her 9 month appt she went from the 50% to the 25%. Now she's at 0%. The funny thing is, she's so tall she's going up in percentiles in length! I think she's also fighting her genetics. Brian was a skinny baby, and a skinny child, now he's a skinny adult! Sadie is built a lot like her daddy.

At 9 months, we talked about getting speech/feeding therapy involved...which of course didn't start until this week. Now we're talking about getting GI involved. Dr. Wendy says, "only because they have nutrition specialists in that department." There is no talk of a G-tube...yet.

For now we need to beef Sadie up. Wendy wants to see her again in a month to reweigh her. We have 4 weeks to pack pounds (ounces?) on Sadie. We want that weight to increase so that we don't have to go see another dr. So, we're adding oil to Sadie's food. Olive oil, coconut oil, flax oil...did you know these are all about 130 calories per Tablespoon?! That more than doubles a serving of Sadie's food at a meal. She should be getting close to 800 calories a day (according to the internet) and she's probably getting barely half that. It's hard because we can't just sit Sadie in a high chair and give her a pile of cheerios to feed herself. Eating for Sadie is work. And she can do it, but it's work. We're also trying to feed her snacks. She's getting better at eating finger foods (although it's more about mommy and daddy's fingers than Sadie's) and she got these freeze dried yogurt bite things for her birthday that she really likes. She sucks on them and they melt and stick to the roof of her mouth and she works on it and works on it. They keep her from being bored, they get her more calories, and they make her practice using her tongue and facial muscles. So, those are really good too.

Beyond the weight thing there weren't really any concerns at the checkup. Sadie is going to get another vaccine, but I requested that we wait until 15 months as she was a little sick this week. We've all been a little sick this week. We looked at her teeth and talked about how we can't believe it's been a year. We discussed equipment and letters of referal from PT. I told her that now that we have long term care we have respite and everything is free again. And then we said goodbye.

It was a pretty good visit...now it's time to go feed my baby again.

Sadie's 6 month checkup

Sadie saw Dr. Wendy today for her 6 month checkup...well, sort of. PCH always gives a call a couple days before your appointment to remind you that you have one, and our call on Monday said we had an appointment with Dr. Ruane. WHAT?! So, I called on Tuesday and was told that the two special needs doctors (Dr. Shaw and Dr. Wendy) are so booked up that they have two new doctors helping, but Dr. Wendy will be accompanying Dr. Ruane. I think that's what she said anyway...she obviously didn't have a degree in communication.

We had a rough trip over there, lots of screaming, had a hard time finding a parking spot, late to our appointment (which, you know, then I was "punished" for by making me wait longer), I was a stressed out mess (and Sadie was worse) by the time they called us back. Then a doctor I didn't recognize walked in and Dr. Wendy wasn't with her. I probably sounded like a fool, but I told her I really wanted to see Wendy because she knows us and I don't want to start from the beginning with somebody new because I don't have the energy for that. She reassured me that Wendy filled her in on Sadie, and that we'd be able to see Dr. Wendy before we left. Whatever.

I proceed then with Dr. Ruane, and as soon as she asks me how Sadie is doing I break down and start crying. At this point Wendy would have hugged me, but I don't know this new lady and here I am sobbing to her about how my baby won't sleep and I am so tired and I just want things to change. Really, she's got nothing for me...do they ever? Will they ever? But we continue and I go down my list of questions and I'm starting to really like her and she's lovin' on my Sadie, and it all turns out okay in the end...until we have to get back in the car to go home.

First of all, Sadie weighs 16lbs 5oz and is 26.5 inches long!!! But her head is the same size it was at her 4 month appointment (I'll talk more about that later). She is healthy. No fluid in her lungs, no breathing/heart/eye/ear abnormalities. I asked about her hips though. She keeps her hips very tight (which probably has a lot to do with the not sitting yet) and her legs straight. We've been working a lot on this at home, but Wendy said that many HIE babies will straighten those hips so intensely that they'll pop their hips out of socket. We want to avoid this obviously.

I had a good talk with Dr. Ruane about starting solids and she said her and Wendy had talked about that and agreed that it was probably okay to start Sadie on stage one foods. Looks like we're going to start with some pureed butternut squash! I was told to put some in her mouth (I'll probably use my finger at first instead of a spoon because of her mouth aversion) and see what she does. I was told to expect a little tongue thrusting, but after a few tries she should be able to swallow it. If, though, she's not swallowing it easily and really still tongue-thrusting after about a week, then we stop and wait another month. So we'll try that probably this weekend. Brian is out of town right now and I want to make sure he doesn't miss this, it's sort of a big deal!

I also talked with both doctors about a new neurologist. Both of them recommended Dr. Williams, who actually happens to be our doctor when we're admitted for the big EEG. They said he's very nice, and Wendy mentioned she's been in family conferences with him and was very impressed with how he interacted with the families. Wendy also said it can be tricky switching neurologists, so she is going to try to get things going from the back end before we call and make an appointment. Honestly, I'm not too concerned about it. She's my baby, I should be able to see who I want! But I think it has to do more with insurance since the doctors are in the same practice or something. Whatever, we'll meet Dr. Williams in a couple of weeks and we can maybe talk about it then.

After we were done talking to Dr. Ruane, she went to get Wendy and when they came back she must have told Wendy about my little meltdown because she came armed with prescriptions. She said the best she could do about the sleep is to give her Adavan. We already have this drug, and we reserve it for drastic situations where there's been crying for hours and hours and we've ALL reached the end of our ropes and tapped out our resources. I don't like using Adavan because it makes Sadie sort of dopey the next day, it really takes 24 hours to wear off. I feel like if we used this on a regular basis, 1. Sadie would never learn how to sleep, and 2. it would stunt her development by dopng her up. So, I declined. The prescription was for 2.5 times more than what we give her now anyway! Wendy said she would have declined it as well. She told me it's easy advice to give, but hard to take and she wouldn't have taken it either. That made me feel better. It's not about me right now anyway, someday I'll sleep again, right? Someday?

And finally, I asked about the MRI. Wendy said there were a lot of big doctor words that she didn't really even understand, but the gist was that they see no improvement. Things aren't really getting worse, but they still see a lot of damage and that isn't healing. This news made my jaw drop. How could there be no improvement?! She can nurse!! She is rolling, and smiling and "talking" and we're going to start giving her solids!! But the simple fact is that her head is not growing, which indicates that her brain is not growing. Wendy did tell me, however, that she sees progress and that if Sadie is meeting milestones, who cares what the MRI looks like. That was a little encouraging. But I did go home with visions of wheelchairs and drooling and eventually dying from seizures at the age of 12 in my head.

I guess overall I should count it as a good day, there were definitely more good things than concerning things at this appointment. It's just that if we were to weigh them on a scale that MRI would outweigh everything by a lot. It shouldn't, but it does, and it's hard not to focus on that ONE piece of news. But life goes on. Sadie is what she is and we love her this way. And if her development plateaus or if she soars beyond everyone's expectations, it is what it is. This is the child God gave me, and I am thankful she is so healthy in so many ways. And she's cute too! Man, she's cute!