Quick Update

Just thought I would share that I'm much happier and optimistic this morning. Last night was a rough night, but it was actually good to take a few moments to reflect and let myself be sad. I haven't done this in months and think I was overdue. Today, everything seems brighter and I think my heartfelt prayers were heard. I also reminded myself of my favorite mantras ("choose joy" and "worry wastes time") and will continue to use those as my guideposts. Onward and upward, as they say - life is truly good.

One quick rant, though, that I must get off my chest. Yesterday in a meeting, a co-worker was talking about how she'd done something stupid over the week-end and said she "deserved to be on the short bus." I was so offended and regret that I didn't let her know how inappropriate her statement was. She doesn't know my situation, as I keep my personal life quite separate from most people at work. Still, in this politically correct world, I was shocked at the ignorance of her statement. David actually hadn't heard the phrase, but it refers to the size of bus (short) typically used to transport disabled or mentally handicapped people. She said it in jest, designed to describe the stupidity of her actions. I didn't say anything because I don't want people walking on egg shells around me, but a quick - "wow, aren't you lucky that you've never been on the short bus, and you better hope you never end up there", or "some of the best and most precious people I know rule the short bus" could do this gal some good.

And off to a joyful day!

Seeking peace and progress

I'm realizing that sometimes the distance between blogs is because I'm so busy I don't take the time to stop and write. Other times, I've wimped out and chosen not to write because I'm in a melancholy mood. I take pride in being optimistic and positive, so it's difficult for me to take a moment and admit that this is hard and in the wise words of Lauren, life isn't fair. The past week was one of those times. I can't really pinpoint why - although it was a very strange week.

For those following the news, Microsoft had the first round of lay-offs in company history. Unfortunately, my dear friend that I've worked with the past 8 years was one of the unlucky few. I think she has taken the news better than I have. I deeply appreciate my employer and recognize the reality of our dire economy. Logically - I totally get it. Personally - it totally stinks to see great people now looking for work in this very same dire economy. I am also incredibly grateful/guilty that my job is secure and we can continue to count on the same wonderful health benefits for Taylor. It is such a gift and truly unmatched, so for our family, it would be tragic to lose this benefit. Thankfully, I'm safe and sound (other than really missing my friend for our typical Monday lunch). She and her family did come over to our house Sunday night and we had a great time - the grand finale was a rousing lip synch to High School Musical by all 5 kids - they made it through 4 songs before we ended the concert. Lauren and Jacob certainly would have lasted the entire CD if we didn't cut them off (school night and all).

The other strangely odd occurrence is that our dear friends had to give their little girl a brain MRI last week and I was so worried for them (thankfully their results turned out normal). Their experience reminded me of our awful ordeal and how terrible it was to see our 8 month-old baby hooked to tubes and IV's for this procedure (did I mention they told us there was a 50% chance she would stop breathing while under anesthesia due to her small size, but it was no big deal? When you're thinking possible brain tumor, you really have no choice). Of course, while we didn't get normal results, they could have been far worse. I will never forget the gut-wrenching call from the doctor who told me the news about her brain. It was fall-to-your-knees emotional and I hope to never experience that shock or immediate sadness again. I cry now to think about it because it was such a helpless feeling - your baby is missing part of her brain and there is nothing you can do. Of course, now we feel much more hopeful and we're really counting on a wonderful life for Taylor. This week has tested my positivity for some reason though, but I'm trying to break out of my slump.

This week-end didn't help, because Taylor was very sick with a bad cold. When she's sick she always seems much more vulnerable (as all kids do), but with her, it makes her seem even further behind her peers. She had such a bad cold on Friday, she was a face full of fluid - eyes tearing, nose running and mouth teething. The fluid stopped on Saturday, but she was very lethargic and spent a good portion of the day sleeping on my chest. She also threw up on me several times because mucus in her throat triggers her gag reflex - ahhh, the joys of sick kids. We see Lauren and Jacob and their greath health and know they had the same tough few years of sickness, so we just have to help her through it. Of course, she's exposed to a lot of germs from her them, their friends, her school and therapy. The poor kid's immune system doesn't have much of a chance right now.

Lauren and Jacob had a great week-end. They went skiing with David and continue to love their lessons. Lauren and David had their monthly Y-Guides meeting (Girl Scouts for fathers and daughters basically) and Lauren went ice skating for the first time. I hear she held the railing very well and David had lots of nice hand-holding on the ice. She had fun and Jacob and I had a nice tea party while Taylor napped.

So, the kids continue to have a good time and Taylor is feeling much better. I'm certain this week will be better for Taylor (and me;). And, next week we're off to Hawaii and we're really looking forward to a relaxing vacation (and some sun:).

Here is a good verse I read that spoke to me from Luke 11:9-10:
"So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened."

My prayer tonight is for peace, patience and progress for Taylor. Join me if you'd like;)

Giggles

Today was another breakthrough day for Taylor (or at least, me watching Taylor). Her therapy is like a whole new world all of a sudden (all of sudden defined as the last 6 months of very hard work). Thankfully, it does seem like it's coming together for her. The first 40 minutes of therapy this morning were spent rolling - back and forth, over and over and over again. Taylor absolutely loves it. She was cracking up -absolutely giggling - the entire time. It was such a complete and total joy to see. Every now and then I get a glimpse of the kid I know she can become and it is so heart-warming. It sounds a little cheesy, but I had a vision today of her running and laughing and I can see how happy she will be. She simply loves to move. She was loving rolling side to side and experimenting with moving her body. It's like she's finally realized that she can initiate movement (now that her muscles are loosened) and she's relishing the feeling. It is such a joy to see her having fun and (largely) enjoying the hours of therapy now. There was so much hard work and tears required to get here - I am so incredibly thankful and relieved.

Her other new trick is using her hands more - we can't wait for this to come together for her! Finally, she will pick up a toy from her high chair tray (the easiest place for her to reach) and she is having a great time banging toys on her tray and experimenting with picking up and dropping. She was laying on her side for awhile at therapy today, reaching across her body, with her bad arm and rolling a ball to me. She thought it was great fun - she's realizing that she can participate and play. Her hands can work for her. Her world will open up so much once her hands really let her explore the world. She's also found her thumb and is contemplating becoming a thumb sucker. This would be awesome because then we would be rid of the binky problem at night. The beauty here is that her hand has to be unclenched for her to find her thumb - it's great to see her hands opening and her making use of them.

It was just a great therapy session today and good progress with her hands at home too. We're so thankful and blessed that she is progressing and her future is looking brighter. We try very hard to focus on this and the improvements that we're making. The reality is that our schedule remains very busy and we can't wait for Taylor to be able to do the things that she will love - whether it's becoming more independant and holding her own bottle or picking up finger food, or playing with toys. She remains very much a baby at 17 months from a motor skills perspective, yet we believe cognitively she is on track, or nearly on track. I admire her hard work and how well she handles what must be very frustrating circumstances many times a day. You can imagine how hard it would be to see something super cool, yet not know how to reach it or interact with it. Her brain is beginning to put the pieces together though and we're remembering to cherish every small step. These pictures are a great example of the fun she's having now. Lauren and Jacob lined up riding horses and all three of them had an absolute blast. Taylor just loves to play with them and feel included.

Her other big activity this week was an appointment with the orthotics doctor. She has outgrown her first pair of magic shoes, so now has another new pair to help with her standing. This effort was much more seamless this time around and the first pair of new orthotics seem to work great.

good news!!

We have had a really great week this week! Taylor is continuing to make lots of progress and we're so thankful!

I thought I would add a few photos of the big kids skiing because they're so super cute. They don't get to go this week-end because David is out of town on a golf week-end and I'm not crazy enough to take them and their gear, plus Taylor, skiing. So, this week-end is all about fun with Mom! I'm holding out for a trip to Build-A-Bear (cool shop where you can build your own stuffed animal) tomorrow for good behavior!

Taylor has had a wonderful week. We have hit a breakthrough with her therapy and we're so thrilled! I really think it's a miraculous gift that her tone/tight muscles have almost completely disappeared - seemingly while we were in Missouri (even though she was too sick to do any work). Before, her first 15-20 minutes of therapy were spent stretching her muscles and now we don't have to do any. Now that she is stretched out - she stretches on her own with normal activity - such as reaching for a toy or laying on her side while sleeping. This means therapy is now - almost fun! We've extended her sessions to 2 hours a day, 3 days a week, with a shorter session on Wednesday, when she also has school. She's working a lot on rolling (she can go both directions now), using her hands, and transitions (moving from a laying position to sitting and back down again, etc). She still loves to practice standing and will stand as long as you let her. She continues to be an amazingly hard worker. We're so hopeful that now that we're really focusing on functional skills the entire time that we'll begin to see breakthroughs and Taylor will have more skills to play and enjoy life. She's ready to dive in and we're so ready to help her!

I am so thankful that we've put in the hard work the last many months to get her muscles loosened. She looks like a normal kid now (no more clenched fists and curled up arms) and will have much more functional use of her arms and hands. I am grateful and believe that God has guided us to get Taylor the help she needs. We still have a long way to go, but all of us involved in her therapy are really thrilled and amazed this week!

We also had a big week with Lauren - she was the class Superstar this week - a much better version of the old Student of the Month from my youth (which I never was because I talked too much). We had the class stuffed animal for the week (a sad, dingy elephant, but Lauren and Jacob were thrilled) and the whole family got to join Lauren for a special lunch at her school on Wednesday. She loved it and seems so big to us now. Tonight, as I was putting her to bed (in Jacob's room for a special week-end sleepover), she told me she wants to be a teacher when she grows up - and even better - for 1 year-old kids. She wants to help them learn to walk and have fun. How precious is that? Just when I worry that Taylor's schedule is a bit much for the big kids they amaze me with their aptitude for love and innocence. That, too, is a gift.

Good times

This week-end was a great week-end. Taylor and I had lots of special time to hang out because David took the big kids for their first ski lesson on Saturday. We have a great place to ski about an hour from Seattle, so they were back by 1pm after their two hour lesson. They had a great time! Jacob was so excited he could hardly stand it and Lauren really liked it too - she went a few years ago and wasn't very thrilled, so we were really excited that they both loved it. Lauren asked me if I could teach her and I had to tell her I needed to learn to ski too! I took a year of lessons the year before she was born, but I've been sidelined since. We're all in the same beginner boat. It's really fun to see them embracing new things and having a blast.

Taylor and I had a special time to play and enjoy the quiet house (a rarity!). We played all of her favorite games and she did lots of jumping while I finally got our house back in order after the holidays. She is such a good baby, although she is finding her voice - which I love. Today I was feeding her lunch and took a break to get the big kids something to eat and she loudly said "mama, mama" - I love that she was taking me to task for not focusing on her lunch. Well done, little gal....

We're back in action this week with Julie (our nanny) back in town. We're looking forward to a normal work week for the first time in about a month! Unfortunately, Julie will be leaving us in early February to join her husband and his moving company. You've heard me rave about how great she is with the kids, particularly with Taylor's situation, so we're also looking for an incredible new nanny. Send up a few prayers for us that we find the perfect person!

We're also still struggling on the sleep front...sigh. We actually let Taylor fuss last night - we've been on a bad roll for awhile now and we're ready to finally get some rest. She will feel so much better if she can get some rest too - this comes to mind right now because she's been in bed for about an hour now and she's already fussing. She gets up so many times at night and is just a restless sleeper. This is really tiring for her...and us. So, we're trying tough love and hoping it works and sticks this time. As David says, she's not sick and she's bright (the minute you go in her room and rub her back, she stops crying - the minute you step away, she starts again - so she's definitely playing us), and we're being wimps by enabling all of us to be walking zombies. So, I'm also praying for strength to help her learn how to sleep and not to cave in to comforting her (every hour of the night;).

Just for laughs....

A typical night at the Gurry house....this is Taylor's entertainment:)

Thank you!

David and I were talking tonight about all of the wonderful friends and family we're so appreciative of this year, in particular. To everyone who reads this blog - thank you for caring. To everyone who asks about Taylor, helps with our big kids so we can manage the juggle, or just simply brings a smile to our faces - thank you for making our lives better. We're very grateful and hope Taylor knows someday how many cheerleaders she had in her first year!

She is making very good progress in her therapy! We were very concerned about returning from Missouri. Due to her many illnesses, we didn't do her therapy or exercises while we were there like we should have. She simply didn't feel up to it. I was so worried that her muscles would be tight and it would be painful for her to work back to where we left off. Instead, the most amazing thing - her muscles have been loose, and her tone is good (much less intense), so her therapy is now focusing much more on functional skills. It's so much more fun - we're spending lots of time on practicing rolling, working on moving from laying down to a sitting position (quite awkward for her since this is very new), standing, and sitting from standing when she is tired (instead of the Nestea plunge). We're also working on using her hands (such as picking a scarf up to play peek-a-boo with a baby doll and then dropping the scarf). We're hopeful that she will make quicker progress now that we don't have to focus so much on stretching, but instead on functional skill building.

Taylor is hungry for new skills now too - we see it her eyes and increasing frustration when she can't do something she wants to (like play with a toy in a certain way). While sad, it's great to see that she is motivated and ready to learn. Today I had so much fun playing with her - I thought she was tired so I was cuddling her and she was squirming, so I asked "Taylor, do you want to play instead?" She did and nodded her head so big. Then, we would play with her musical toys and I could tell she was getting bored and I would say, "Taylor, do you want to play with your baby?" and she would nod her head so big again. It's great fun to communicate with her. I really feel like we're on the cusp of more breakthroughs and I can't wait to see the next big leap.

The pics above are of Taylor in Missouri - bouncing in a fun jumpy contraption with her Aunt Shawna (and wearing the first bow that would stay in her very short hair) and sitting with her cousins, Ryan and Ethan.

Happy New Year! neurology update...

Happy New Year! I can't believe we're already several days into January. I had planned to post more frequently, but already I'm off to a slow start.

We had a wonderful time in Missouri - from Christmas Day through January 2. The big kids had a blast with their cousins and it was so great to see my family. It always boosts my spirits to be "home" and I gain such joy from being around my family. The only downer was poor Taylor was sick the majority of the time we were there. She had an ear infection before we left Seattle and had taken several days of amoxycillian before we left. She did great on the trip, but after a few truly horrendous nights of sleep, I noticed her rubbing her ear around 4am one morning. Ahh....ear infection was still there. David took her to the doctor the next morning and her first ear infection wasn't healed and she had another ear infection in her other ear, so she got the hard stuff - augmentin - yuck. This has happened before with her (and Jacob), but it's always a drag because it drags out the sickness and the augmentin really works a number on their digestive system. We were prepared for explosive diarrhea - ewww - but the medicine either really upset her stomach or she also got the stomach flu, because she then threw up for several days. And, her ear medicine wouldn't stay down, so that didn't get better either. The poor kid felt absolutely miserable. David and I were exhausted from several very sleepless nights and were so thankful my parents let us catch up with some late mornings and naps. Unfortunately Taylor wasn't really herself until our last day, which is such a bummer, because my family sees her so infrequently. Ahh...the lousiness of timing....at least she felt better for the trip home and continues to feel good.

This week has been crazy because our nanny, Julie, is on vacation and David and I are doing the massive juggle of trying to work/parent/caretake. On top of a missed week of work for snow before we left and our time in Missouri, we're hopping this week to cover all bases. I had intended to post an update earlier, but it's been even more crazier than usual.

Yesterday was an important day for us. Taylor had her first appointment with a neurologist - Dr. Brien Vilcek. Dr. Spector recommended him and we were really happy to finally see an actual neurologist to discuss Taylor's brain. From the very beginning, we were channeled to neuro-development (Dr. Cowan), who definitely looked at her brain MRI and we've had several discussions with him. But, we wanted to see a neurologist too just to make sure there weren't any broader health concerns we should watch for. Like all specialists, it took us months to get an appointment, so we were thrilled to get another appointment under our belt. This should be the last of the specialists we have to see.

I was very apprehensive yesterday morning before our appointment - as anyone that has received bad news from a doctor can probably appreciate - you get a little gunshy. I had a few worst case scenarios running through my mind (what if she needs brain surgery? what if they missed a tumor on her original MRI? what if we have to do another MRI and put her under anesthesia again?) that I had mainly convinced myself were unfounded hysteria, but was happy to have my fears put to rest. I was also scrambling to get organized. I had requested our updated medical file from Children's, but of course, it didn't arrive in time. So, Taylor and I went to Children's that morning to pick up medical records and a last minute request from Dr. Vilcek for the original films from her MRI (which cost $400 to receive - 40 sheets at $10/page). Hopefully insurance will cover, because he never ended up looking at the films.....grrr....normal medically insured people would pull their hair out.

Dr. Vilcek was another interesting character - Susan, our therapist, had warned us that he could be negative at times and other parent's had had a hard time meeting with him - so we were sufficiently prepared. Overall, the appointment went really well. Foremost, there aren't any major concerns regarding Taylor's health, or her brain's health. He wasn't overly concerned that her head is small (less than 5% - there had been some concern that her brain was growing appropriately) since it has maintained a consistent growth progression since birth. He also thought our therapy plan was aggressive, but good, and that we should be encouraged by her motor skill progress to date. He said she should definitely learn to walk, and likely run. She likely won't be the most agile or coordinated of kids, but that's OK. Her challenges with her hands are a bit of a mystery, but he thinks it's a good sign that she's been so receptive to therapy and she'll likely gain functional use of her hands over time too. All great news and more definitive prognosis than we've heard from other doctors. He was impressed that she can say a few words and that she seemed alert. Most of these specialists say something along the way that takes your breath away and Dr. Vilcek was no exception. In a perfect example of saying too much, he said he definitely didn't think Taylor would be "severely or moderately retarded", but couldn't say that she wouldn't be "mildly retarded" - of course, he said, at her young age, any kid could be mildly retarded and you wouldn't know it yet. So, essentially, her cognitive future is unclear still, but there are very good signs (nearly on track social skills, i.e. speaking, separation anxiety, laughing appropriately, etc.) that she will be fine. It was a draining appointment, like most are, but we're happy with the result. Essentially, her health is fine and we'll just keep working to help her grow and learn new skills. He wants to see her again in 9-10 months, so that was a relief too. It's nice that we won't have to go there again for awhile.

Taylor gave me a huge treat after her appointment. She was laying on her bedroom floor and rolled from her back to her tummy - where she usually gets stuck and we need to help her roll over. Yesterday, she pushed up on her arms and rolled right over from her tummy to her back! This was such a huge gift - just when I think we've hit a plateau, she knows to try a new trick. This one was especially meaningful because she had to use her hands, supporting her body weight, to push off and roll herself over. She has worked so hard to get her hands to work with her - it was a great gift and I was so proud of her. I think she knew mommy needed a little boost of reassurance that everything is going to be OK. Susan was also reassuring this morning - she wouldn't work so hard and follow commands so well in therapy if she wasn't a bright girl.

Another gift was my quick turn in a devotional book and my favorite scripture popped right out at me - another gift I believe - "For I can do everything with the help of Christ who gives me the strength I need," Phillipians 4:13.