Endocrinology update

The latest Taylor update involves the endocrinologist. Taylor ended her big week on Friday with an appt at the endocrinologist -who we hadn't seen in nearly a year. We've had her hormone levels checked a few times, but this was our first appointment - mainly to make sure her levels were OK and that her growth was on track. Thankfully, this was a positive appointment. Dr. Dilchek is a friendly lady and was very pleased with Taylor's progress. It was interesting to recap our year - allergies, seizure, therapy, neurology and everything in between. She said it was amazing, and great, that we've avoided medication with all the complications we've seen.

The good news - Taylor was on the growth chart! Barely - she is 3% in height and head circumference - a little less for weight. It's great that she is continuing to grow proportionately and following a positive growth curve. It's not a surprise that she's a peanut - but we're thrilled that she's on the chart and no obvious reason for concern. After her appointment they took an xray of her hand/arm to check her bone age (and to compare to last year's xray). We took her back on Saturday morning for them to take 3 vials of blood- the most they can take for her size. They are doing a full blood work-up to make sure all looks well. We wanted to give her a day break since she just had her surgery on Thursday.

Phew - poor kid, but she continues to roll with it very well. She's a little trooper and we're so proud of how tough she is. And thankful that we had a good appointment!

Taylor has tubes!

Taylor made it through surgery wonderfully. It's amazing how quick the procedure is. We got there at 6:15am, her surgery began at 7:30am and we were home by 8:45am. Yet again, we're so thankful that we live just a few blocks from Children's Hospital.

Taylor was such a good sport. She woke up smiley when I got her up out of her crib this morning and she didn't even cry when the nurse took her away. We were anxious, but the anesthiologist set our fears at ease - he said the anesthesia would actually prevent seizures because her brain would be relaxed. She came back from surgery quite sad - that was hard, but we knew it was just the medicine wearing off. She was sad for about an hour and then she finally fell asleep on my chest. Once she woke up about an hour later, she was fine all day. I hope her ears feel so much better.

The surgeon said her ears were fully blocked with fluid and it was a very good thing we had her get tubes. He said it was so much fluid that her hearing was definitely impacted. We're so thankful the surgery went well. This surgeon has been doing this procedure for over 30 years and he said this was one of the harder ones because her ears are so little. Even though she is 20 months old, she is tiny - with tiny ears. He said he almost wasn't able to get the tube in one ear, but was able to do it. Thank goodness!

So, we're thankful that today went well and hoping for many months of great health ahead!

New pictures

New pictures! Thought I would add some recent pictures of Taylor.

This is Taylor riding her new tractor - she loves it! A swimsuit shot and the kids with their special Nana.

Progress

Tomorrow is a big day for Taylor. She gets her ear tubes! I'm a little nervous, but trusting this is a minor procedure and she will be fine. After the procedure, she will feel so much better. She has a ton of fluid in both ears and it can't drain. I have to think she feels like she is hearing everything from underwater. When Jacob was in the same state, he failed a hearing test. For Taylor's sake, she needs to hear and have her balance uncompromised - in addition to just feeling good. She has really had a tough winter and we're hoping she feels much better tomorrow.

We got very lucky - her appointment is the first of the day at 6:15am. Since she can't eat until after her surgery, we're thrilled she will be done so quickly. The procedure literally takes 10 minutes and then recovery time. Hopefully we'll be home by noon. Jacob has had two sets of tubes so that definitely reassures us. We're still concerned for Taylor, and more so now that she had her seizure. They've assured us she should be fine.

We also finally scored on a quick specialist appointment. With fairly minimal hounding, she will see her neurologist on June 4 to discuss the seizure situation. My first offer was July 25th, but I pulled a Susan and scored June 4. I'm happy we'll hopefully get some answers so quickly.

Taylor continues to feel fine and is making great progress in therapy. I will post some news pictures soon. She is practicing crawling and walking a lot (very assisted) and she loves it. It is great to see her having fun.

We had a great wonderful Memorial Day week-end. Lots of family time and fun in the sun. Seattle is the only place on earth where people flock to the pool when it is sunny - even if it is only 65 degrees. The kids are loving swimming and Taylor even likes the pool now! We're so glad.

I have to share a funny Jacob story - I took the big kids to the dentist yesterday and he wasn't thrilled with getting his teeth flossed by the hygenist. She finished his top row of teeth and said "ok, now it's time for your bottom" and he freaked out. He literally thought she wanted to floss his bottom. I explained she meant his bottom row of teeth. You gotta love kids.....

Lauren is also a big kid now - she pulled her top, front tooth and has a huge gap in her mouth. It is adorable and I can't believe how big she is getting.

Send Taylor a special prayer for tomorrow!

Summer begins

Well, we heard from Dr. Spector yesterday and thank goodness we didn't have our hopes up for anything definitive. He left a message and then I spoke with him later in the day. Basically he said that her EEG did show signs of seizure activity and that she is susceptible to seizures. He recommended that we see our neurologist for a recommendation on what to do next. Thanks. Serousily - we waited a week to confirm that yes, she did have a seizure - she might have more - and we should see our neurologist. Incredibly helpful. So, thank goodness we didn't have our hopes up for anything more definitive. Now we'll see how long it takes to get in the door of the neurologist. The big question is if she'll need medication. We hope she doesn't, because there can be tough side effects. We have a lot more to learn though, so as always, it's one day at a time.

Thankfully, Taylor seems fine. She is happy and smiley and babbling up a storm right now. We are having so much fun with her. She is having a great time riding in her car outside and her new bike inside (Nana found it while she was here). She hangs on to the handle bars and smiles so big. She loves being such a big kid. Her therapy is also going well - she is enjoying practicing being on all fours and working on crawling. She is also having fun practicing walking by pushing a baby carraige. All of this is assisted, but it is progress.

We're having a great Memorial Day week-end. Just relaxing at home and enjoying family time. The sun has been shining, so we've been going to the pool the last few days, spending time in the yard, and biking/riding, etc. Taylor went in the pool today and loved it. David carried her around for about 40 minutes and she had a great time. We're encouraged that she will a happy swimmer this summer. It was only 70 degrees today, so it will only be better as the summer gets nicer. Last night, Lauren had the end of her week of mini-swim team - she swam the entire lenght of the pool - 25 yards in 45 seconds. We were so proud of her - she was a bit late to embrace swimming, so it's great to see her doing so well. Jacob is enjoying the pool too - he has the idea of swimming down - he can swim pretty well. He just hasn't figured out how to take a breath without hanging on to the wall or putting his feet down. We're hoping after a few lessons, he'll be able to safely swim this summer.

So, even with the seizure hiccup, we're having a good time and enjoying each day. I'll post pictures soon so you can see Taylor on her new bike and in her new swimsuit - she's quite the looker.

All about ears

Well, we still haven't heard the results from our test on Friday. Sigh. We should never be surprised by the inefficiencies of the medical system, but....In any case, we've put it behind us and we're moving forward. We do hope to hear soon. We're essentially hoping to find out if she did have a seizure, what kind it was, and what we need to do next (medicine, just wait, etc). We're hoping for just waiting and seeing, but as always, we'll trust the experts.

Our big news this week is that Taylor is going to have her first surgery in one week - next Thursday. But...we're actually very excited!! She's getting ear tubes! She has been so miserable this winter and the ear specialist confirmed yesterday that she needs tubes. Jacob has had them twice, so it seems much less serious than our first go-around. She will have to go under anesthesia briefly, but it's literally a 10 minute procedure. They've worked like a charm for Jacob, so we're hoping Taylor can be ear infection free for a long time. Even now, she doesn't have an ear infection, but her ears are full of fluid. This definitely impacts her hearing and likely her balance. The poor kid doesn't need any more challenges, so bring on the ear tubes!!

Seizure

We've had a big week in the Gurry house. My mom has been visiting with us - she stayed with the kids while David and I were in NY last week-end - and we've all so enjoyed her visit. Taylor is a huge fan of Nana and it's been so fun to see them have a great time together. The first day Nana got here, Taylor gave her a huge, sloppy kiss and they've been great friends over the past week. Lauren and Jacob are having a ball too - putting on shows, playing, riding bikes, and generally having a great time.

We had a big development this week and it was quite scary. Taylor had her first seizure on Wednesday. I was holding her and talking to Alison in the kitchen and mom was playing with the big kids upstairs. All of a sudden, Taylor stiffened, jerked her head back and her eyes rolled back in her head. It was quick - maybe 10 seconds - and I wasn't sure if it was a seizure. Alison and I exchanged big-eyed glances and I asked her if that looked weird - she agreed. Then Taylor squinted her eyes shut real tight and cried a sad and scared cry. I comforted her and she quickly fell asleep. The whole thing lasted maybe two minutes - including the time it took her to fall asleep. I told Alison I thought it was a seizure, but wasn't sure. I called the doctor's office because I wasn't sure what to do. Taylor was sleeping peacefully, so I didn't think I should call 911. The doctor's office told me that it was likely a seizure and Dr. Spector said he wanted us to get an EEG on her brain - to look at frequencies and patterns of her brain activity.

Wednesday was a hard day - David was in LA for work and desperately wanted to be home. Taylor felt fine after she woke up from her nap, so there was no need for him to rush home. We've known that she was more susceptible for seizures because of her brain condition, but had been told if she didn't have any before she turned one, she likely wouldn't have them. So, this was a surprise - we thought she was out of the woods on the seizure front. And, we both were overwhelmed with an "OK, she's had enough to deal with" feeling. Between the brain condition, severe allergies, and now seizure, it just is too much for a little gal. Our synopsis - she deserves a break. We're so hoping she gets one soon.

I was so thankful my mom was in town and was a great help with the big kids while I gathered myself and took care of Taylor. I was also so happy that I was home - not in NY - and that Alison and I both saw the seizure so I could ask her to help me describe what happened. It was definitely one of those life moments that was quick - but incredibly long - at the same time.

Today, we did the EEG test and I was so thankful that they didn't have to put her out for the test. She was such a trooper. The test would be uncomfortable for anyone, but again, too much for a little baby. They spent about 10 minutes measuring her head and marking it with lines. Another twenty minutes were spent putting sticky paste on her head and then attaching about thirty electrodes - on her tiny little head. Each electrode had to be taped on so she wouldn't knock them off. The poor thing was such a good sport - she was definitely sad at times, but remarkably patient and good-spirited - not only was it a cumbersome process, but she was tired. It was well past nap time and she wasn't supposed to sleep before the test. Once they got the electrodes on they wrapped her head with gauze to try and keep them in place. She looked so pitiful all wrapped up, but she did the test perfectly. They were able to track some brain activity while she was awake, while she fell asleep and while she was sleeping. I was able to cuddle her in the hospital bed with all of this crazy stuff on her head. She had a hard time going to sleep at first, but we gave her a bit of her bottle and she fell asleep. We were so thrilled that they were able to do the test exactly as they wanted.

We're not sure what we'll find out. Dr. Spector should call us next week. Hopefully they will be able to tell if she had a seizure, potentially what type, and maybe provide guidance for us. We never expect much from these tests anymore - but we'll see. We're so happy to have that part behind us and now just want to have a fun week-end with the kids and my mom.

Send Taylor an extra prayer or well wish - she's happy as a clam right now, but we so want her to be healthy.

Happy Anniversary

(I wrote most of this on Tuesday on the flight back from NY – I’m a bit dated in getting it posted, but wanted to commemorate our special anniversary with Taylor).

What a crazy few weeks we have had – and I do mean crazy. I had to fly to LA last week-end for a rare work event and then David and I spent the last 5 days in New York for a lot of fun and a bit of work. Most importantly, my mom is visiting and having such fun with the kids now! So much has happened and I’ve been craving some meaningful blog writing time, but I haven’t had many spare moments unfortunately.

Most touching anniversary – I didn’t commemorate it in writing, but it was top-of-mind for me for several days. Dear sweet Taylor’s one-year anniversary of our finding out about her condition has come and passed. Cinco de Mayo – I don’t think I’ll ever forget that day last year and it’s the one memory that can bring me to tears quickly. I was a little melancholy for a few days – it shouldn’t really matter but it became a notable day for me for some reason. A sweet friend (after I spontaneously started crying at Jacob’s soccer – this does not happen often I swear) reminded me of the progress Taylor has made and what a joy she is to so many. So, I thought I would make a little list – just like I did last year. That list was full of uncertainty and fear and not knowing what was to come. This year – one whole year later – we actually don’t know a lot more about what Taylor’s future will hold, but we know even more than ever how much we have to be thankful for.

Drum roll please……Taylor’s Year in Review
1. She is one tough cookie – she has undergone endless medical tests, doctor appointments, interrupted naps, countless ear infections and most of all – incredibly grueling therapy that would exhaust most adults. She is so tough and such a hard worker – we are so proud.
2. She has learned many important skills that we could not have anticipated how much work it would be for her, or how critical they would be for her development.
• When she first started therapy, it would take nearly an hour to stretch out the muscles in her arms – just so she could straighten her arms. This was so painful for her – we are so thankful that this can be done within seconds/minutes now – depending on the day.
• Taylor was not interested in toys – she didn’t look at toys, wouldn’t reach for toys and was simply not interested. As her vision process has improved and her arms/hands have become useful, she looks at toys, picks up toys to play with them, loves to make music and sounds and has fun! It has been such a gift to see her having fun, entertaining herself and enjoying life.
• She couldn’t bear any weight on her hands and hated to be on her stomach. This limited the development of her protective reflexes and while we’re still working hard on this, she can bear weight on her hands for a long time now and enjoys being on her tummy. It is so great that she can enjoy a different position than just lying on her back and functionally use her hands.
• She couldn’t roll or move – her exploration was limited because she couldn’t roll over. Now she can roll in all directions and is beginning to explore with moving to a toy – the freedom this will give her will be such a gift.
• Taylor couldn’t sit alone – she had to be held or laid down on her back and was very much an infant still. Now she is such a big girl – she can sit all by herself, independently, play with toys, and “belong” with the big kids and the kids in her school. I had such sadness that she couldn’t sit up alone and join the kids for circle time at school. What a great day it was when she could sit on her little map – just like a big kid.
• Sleep – oh, the sleep. She was such a restless sleeper and needed help to get her binky so many times at night. She still can’t get her binky with her hands, but she has gotten very adept at using her face to shove the binky into the bed so she can grab it with her mouth. We can’t wait for those hands to work just a bit better, but we’re thankful she is officially sleeping through the night now (and so are we).
3. Most importantly, Taylor is a lover and so happy. She laughs and smiles, loves her family, enjoys her friends (particularly special friends Alison and Julie – her nannies this year), and loves to cuddle and give sloppy kisses. As we’ve seen more kids with other challenges, the gift of emotion is so huge – we are so thankful that she has this skill in spades.
4. We’ve learned a lot about unconditional love and how much you can love your kids – really, truly to the depths of your heart. Of course we’ve always loved Lauren and Jacob too, but our experience with Taylor has really shown us how much to treasure the good days and how deeply you can pray on the not-so-good days. We are thankful for every day we have with all of our kids and our gratitude is deeper than ever.
5. We’ve learned how critical something like allergies can be, yet how inconsequential in the grand scheme of things. We’ve learned that life is definitely not fair, but sometimes your life is blessed in ways completely unexpected too. We’ve learned more from the special needs than ever expected and been inspired in ways we couldn’t have comprehended.
6. We are grateful – for family and friends that have supported us, particularly Taylor. We’ve felt your prayers, well wishes, and appreciated every phone call or note. She has touched so many lives already and her journey is just beginning. I truly believe she will have an exceptional life and we’re looking forward to seeing her amaze us all.

I can’t wait to see how much we will celebrate on her next anniversary.