cool rider

We’re on a good roll right now – hurray! Taylor is doing great at therapy now – working so hard on spending lots of time weight-bearing on her hands. It’s amazing when we think how hard it used to be for her to be on her tummy and feel any weight on her hands. She spent probably 30-40 minutes pushing up on her arms today – I can imagine it is as hard for her as that many push-ups would feel to me. She is also practicing scooting (pivot prone, Susan calls it) – where she places a toy a bit out of her reach and helps her pivot in a circle. She’s trying to get her comfortable with movement and help her begin to move on her arm. The big goal right now is still getting protective reflexes so she can protect herself. All of this work should help with that. We’re trying several different approaches and hoping one of them makes it hit home for Taylor. She is working so hard and we’re so proud of her.

You can see how big she’s getting in the latest photos! David pulled out the red car (enjoyed by Lauren and Jacob) and Taylor LOVED it! It’s so awesome that she can play outside too, without having to be carried all of the time. The big kids thought it was so cool that Taylor had her own “bike”. She smiled so proudly as they cheered her on. The car has a little seat belt so she is largely safe, but she could tip over if the car cornered too quickly. Lauren and Jacob don’t get to drive yet:) The best part – the car encourages her to hang on to the wheel and she does! She hangs on to the wheel consistently – it’s so great to see her use her hands.

She went to the eye doctor today and it was a non-event. They’re looking to make sure that both eyes are carrying their weight – and they are. She is still having some eye wandering, but it’s not a concern. We’re still hopeful she will grow out of this as her brain develops.

Overdue update

Well, I have a been a bad girl with the blog – yet again. I think because Taylor’s progress/situation is slower and less frantic than it used to be, I’m not doing a great job of keeping up with the blog. I always enjoy writing once I take a moment to catch up and always vow that I’ll do better. We’ll seeJ We have had quite a lot going on – we had a wonderful Easter – as you can see from Taylor’s picture she was a lovely gal on Easter Sunday. It was a quiet Easter out here because David’s parents were in Hawaii, so we had dinner with his sister and her family after many, many egg hunts. I have such fond memories of my Easter’s growing up that I love trying to recreate the magic for my own kids. Lauren started to ask a few tough questions this year – she was trying to sort out if the Easter bunny was a real bunny or someone wearing a costume. The bunny hides eggs inside in Seattle because it is cold and rainy outside. Lauren is always a little freaked out about the idea of a bunny in the house, but she was mostly excited. Jacob ate as much candy as possible and Taylor enjoyed watching the kids run around on their egg hunt.

The next week (last week-end) we left town on Wednesday for a long week-end in Palm Springs. It was simply dreamy. Very sunny and warm (around 85-90 degrees, but a very pleasant dry heat) and lots of time outside. The kids traveled great and everyone had fun. Taylor enjoyed the sun much more than ever before and she even had fun in the pool! We stayed at a condo complex with 8 pools and a few other families that are our friends. The kids had buddies to play with and David and I really enjoyed the break – and the sun. It was a very relaxed and laid-backed vacation – just what we needed.

Taylor was thankfully healthy – she’s finally kicked her ear infections and is all done with her medicine, so we’re hoping she can stay healthy for awhile. We do have an appointment with the ear/nose/throat specialist in a few weeks, and we hope that he wants do the ear tube surgery on Taylor soon. We really think she needs it and we’re ready to make it happen. We’re just so tired of her not feeling well – it’s sad to see the toll it takes on her and her therapy has definitely been compromised over the last several months because she has felt so poorly. We hope we can get the procedure done soon so she can enjoy the relief from her ears. Because Jacob has had the surgery twice, we are less intimidated than we would be otherwise.

Unfortunately, my vacation peace-of-mind was fairly short-lived. On Monday we had a crazy day – David had to go to Portland for work and Alison was sick, so I juggled the kids (and work). Taylor had a long therapy session with Susan, and she and I had a long discussion about Taylor’s progress. It was a long conversation and emotionally draining for me. All of us wish Taylor were making quicker progress (particularly with her protective reflexes) and Susan was recommending a seven-day-a-week regimen for awhile. We struggle with the balance of aggressive therapy for Taylor, while not wiping her out. The rest of our team (therapists at her school and all of our various specialty doctors) thinks we have a very aggressive approach and more is not necessarily better. So, for now, we’re going to stick with our program, add a bit more work at home, and hope a sustained healthy period for Taylor will help us break out of the plateau.

Also on Monday, I had my first tough experience with Taylor’s condition and its impact on the other kids. I was picking Lauren up from school and she and Jacob were playing on the playground and one of Lauren’s friends asked “why do Taylor’s eyes look funny?” I just said “oh, I think the sun is in her eyes.” But, it reminded me how much I don’t want Taylor’s condition to take a toll on Lauren and Jacob. I didn’t realized how much it affected me until the next morning – I had a meeting with Lauren’s teacher to discuss her reading progress and mentioned to her that some kids might start asking about Taylor and asked her to let me know if she sees Lauren sad, or thinks we need to discuss special needs with the class. I was so embarrassed, but I think the rough day or two hit me at the wrong time, and I started to cry during my parent-teacher meeting! I was surprised and didn’t pull it together as well as I wished I would have – Lauren’s teacher was a dear, but it’s a good example of how sometimes the weight of our situation will hit at the most random times.

I’ve been much better the rest of the week and it’s been great fun to see Taylor feeling better. Her therapy sessions are going better and we’re all feeling more optimistic. We have some dear friends struggling with a very tough situation and we’ve been spending time with them over the last week. In our effort to be good friends to them, we’re reminded of how much we have to be thankful for. Each of our kids is such a gift and we’re thankful for every day we have with them.

Happy Easter!!!

Taylor Therapy Pics - April

-sorry, formatting is really bad on these - the blog service is acting up tonight, but I'll try and fix soon...-
This first pic is of Taylor weight-bearing on all fours - this is not only good practice for crawling, but huge progress using her hands to hold her weight. Not only is this important for functional use, but also for protective reflexes in case she falls. The next picture, she is practicing going from laying down to sitting - an important transitional skill that is very hard for her. The third picture, she is practicing using her hands on a toy gumball machine. She works on pushing the balls into the hole and then pulling a lever to make the ball pop out. This is a lot of fine motor work for her. The first standing picture, Taylor is practicing standing on one leg. This used to be very hard for her, but now she can do it. This is a good way for her to build up strength and prepare balance for walking. The next picture doesn't look like much work - but Taylor is working on controlled sitting. Rather than collapsing after standing for awhile, it's important for her to sit - bottom first - when her legs get tired and when she falls. She is sitting on demand, following Susan's request, from standing. Finally, this is Taylor on her new horse. Susan fitted it so she is big enough to sit comfortably. She practices keeping her arms forward and holding on to the bars - it encourages her to use her arms functionally and she really likes it. She can't do this by herself yet, but we'll get there. She's making great progress, isn't she?

Finally healthy and Easter prep

Hurray! We had a great day. Finally, everyone is healthy and happy - just in time for Easter!

Poor Taylor had a tough few days - Thursday morning she went to see Dr. Spector who confirmed her double ear infection. He gave her augmentin - yuck - this is the tough medicine that wrecks her stomach. He also finally recommended that we take her to a ear/nose/throat specialist to evaluate her for ear tubes. While we aren't looking forward to another procedure, we really think she needs them. She has been pretty much miserable and sick since Christmas - give or take a few weeks. We're so ready for her to be healthy.

I took the big kids to soccer that afternoon and we had been there about 10 minutes when Taylor threw up - about five times. She was covered in barf, and I was half-covered from holding her. Her first (and unfortunately largest) barf hit the side of the (indoor) soccer field. The others I steered her over a trash can. We made quite the scene. As Lauren so smartly said, "Mommy, I think you need help." The kids were very concerned about leaving the barf on the soccer field but I really didn't have a choice. I couldn't put Taylor down and no one offered to hold her (covered in barf), so we just left. I do feel guilty, but hands were a bit tied. The medicine had kicked in and upset her stomach. She slept from 4pm-7pm, and then we woke her up and gave her a bottle. She went back to sleep from 7:30pm-7am. Poor baby....She was pretty lethargic on Friday too, but thankfully, she was all smiles today. Lauren and Jacob scored yesterday - to try to give Taylor some peace and quiet, I took them to the only kid movie playing - Hannah Montana. I had sworn I wouldn't take them, but caved on the premier day.

It was wonderful to see her looking like herself today. We went to an egg hunt at our neighborhood park - in true Seattle fashion, in the rain. Taylor rode in a carrier backpack on David's back under an umbrella. We had a nice day with the kids. David took Jacob for a "guy's haircut" and I took Lauren for a girl's pedicure. We did lots of playing and Taylor was very smiley. It's wonderful to have everyone healthy.

Jacob has offered comic relief the past few days - unfortunately it is of the potty variety. Here's a sampling - he'll say, "Mommy did you know we have a Tudor house?" True - and not funny, but then he says, "you know....a TOOTER house...ha, ha...." Those that know him can imagine the belly laugh. Another gem - we were talking about someone that lives in Phoenix and he died laughing - then he says,"They live in penis..ha, ha,ha..." The joys of 4 year-old boys....

Lauren is a lot excited and a little stressed about the Easter Bunny coming tonight. She is asking lots of questions - trying to piece together how this bunny thing works. Here are a few of her questions: Is the Easter Bunny a real bunny or someone in a costume? Does the Easter Bunny hop or stand up - I've never seen a bunny stand up before? Does the Easter Bunny have a helper - how does he carry all of those eggs? She also wanted to be sure that he would stay downstairs - the idea of a strange bunny in her house is a little worrisome. Mostly, the kids can't wait for Easter tomorrow - for the fun stuff of course, but they do have a good grasp of the Easter story. We've talked a lot about it at home and church, and in Lauren's school. Hopefully they'll treat the day with the reverance it deserves since there isn't children's church tomorrow and they'll have to sit with us!

More ear infections

- I wrote this last night, but couldn't post because our internet wasn't working quite right-

Tonight I am facing a case of the worries. It was a bit of a long day – sleep was interrupted last night courtesy of Taylor and Jacob. Taylor is the nighttime pooping bandit and woke herself up around 4:45am with a poop and then didn’t go back to sleep until 6am. Jacob has growing pains in his legs at times and was restless last night. In any case, I’ve been up since 4:45am – I was up with Taylor and then had my exercise boot camp class at 6am, so decided to rally through the day.

Taylor had a tough day of therapy today – she didn’t seem to feel well and wasn’t into her exercises. Her left arm continues to tighten up on occasion and it’s a mystery – typically though when she’s sick or over-tired. We had a half-way productive therapy session and Susan encouraged me to figure out how we can keep her healthy – I wish it were that easyJ No doubt, her therapy has been compromised over the past months because of her chronic ear infections. She had a reasonably good day at school – I almost didn’t take her because I was worried that she didn’t feel well. She smiled really big the minute we walked in the door and had a great snack with her friends. She ate some crushed up pears and a watered-down smoothie. She then played for a bit and showed off her crawling pose for the therapist at her school, Christy. She was impressed with Taylor’s new trick.

This afternoon was busy – I took Taylor to the allergist for her 6 month check-up and it was a grounding experience. They tested her skin for eggs and peanuts again, with the hopes that the severity of her reaction would have lessened. Unfortunately, it’s gotten worse. She is really allergic and they gave me a special discussion around how to use the epi-pen and ensure that we have one with us at ALL times. Even leaving it in the car, if she ate something at Costco for example, might be too far away for her. Yikes…..serious stuff. It’s not as much of a concern now because she doesn’t feed herself and can’t move to food, but over time, it will be really important for us to stay very aware. You never want to feel like you’re dealing with a life or death situation, but her allergies are that serious. Thankfully, as long we’re prepared and cautious, she should be OK.

The allergist also discovered that Taylor has 2 ear infections. She just finished a round of antibiotics that clearly didn’t work. It’s so frustrating and we feel so bad for her. It is reminiscent of our experience with Jacob, but it seems worse for her because of her aggressive therapy program and the need to maximize these precious young months of brain development. We have an appointment with Dr. Spector tomorrow to discuss her ears and what to do. We’re leaning toward ear tubes at this point, because she just needs to get healthy. We hate the idea of surgery, but recognize this may be the best outcome for her. The allergist said he recommend tubes given her history, but we’ll see what Dr. Spector says tomorrow.

Then, it was Lauren’s turn to go to the doctor and she too, has another ear infection. Seriously….we’ve had our limit of ear infections this winter! Thankfully she’s not in pain and self-diagnosed – I was afraid that she was looking for a sympathy doctor appointment, but nope, she has one too. Phew….we’re ready for summer!

So, tonight, I’m fighting feelings of fatigue and worry – worry for Taylor and that she’s making enough progress, worry for her ears and allergies, and that she is having fun. Worry for Lauren and Jacob for more normal concerns – is Lauren going to read well enough for kindergarten this year and are we making enough time to work for her; and is Jacob going to pass through his authority experimentation phase soon? I’ve reminded myself that “worry wastes time” and that God will not give us more than we can handle, but I guess worrying is part of being a parent. Thankfully, I found pictures that Lauren had made of herself with each member of our family yesterday. She and I are riding on a unicorn, she’s on the beach with David, playing ball with Jacob and my favorite – she drew a sun and flowers that reminded her of Taylor. Life is really good when you know your kids feel loved – we’ll just keep at it and hope they always know how truly special they are to us.

Making progress

Happy April....the time continues to fly by. These pictures are from Palm Sunday - yesterday, before church.

We've had a busy last week or so.....last week I had to fly to LA for a short trip, and then David's family gathered to celebrate Grandma Doreen's life on Wednesday. It was a special time to remember her and how special she was to our family. We were also thrilled to see a lot of David's family from Canada, and his brother and his family from Utah. We hadn't seen most of them since his family reunion last summer and it was really nice to catch up. It was also fun for them to see Taylor - several commented on how much she has grown and how far she has progressed. It's always nice to hear such positive comments as the day-to-day can merge together for us.

But....we've had a great week or so of therapy and it's been so exciting!!! Taylor has her stamina back and is able to go the full 1.5-2 hours again - which is a really long time for anyway to exercise, including our little baby girl. She is working on lots of new tricks - her hands are tolerating much more pressure and she is able to spend lots of time taking weight on her hands. Susan has her on all fours now in the crawling pose and she rocks back and forth taking weight on her hands. It's so fun to see her in this position. I'm like a carnival personality when I take her - while she practices these new moves I'm constantly entertaining her with a revolving door of musical, stuffed animals. Her favorite is a stuffed dog with jingle bells on his tail and ears that sings Jingle Bells while dancing. She really doesn't cry much even though she's working incredibly hard. It's been a real gift to see a bit of a breakthrough.

Alas, she also has another ear infection. She wasn't eating well late last week, so on Friday I decided to take her to the dr. to check her ears before the week-end. And, another ear infection....the poor baby. She really can't get a break. They keep saying "bring her back in 3 weeks and we'll make sure it has cleared" and we can't even make it three weeks without an ear infection. If we have another one or two, we'll seriously want to consider ear tubes for her. Jacob has had two pairs and it made a world of difference. We're hoping she will outgrow the ear infections over the summer, so we've been hoping to get there and re-evaluate in the fall. But, we've definitely had a rough last few months. Today she finally felt better and was so smiley - it's wonderful to see how happy she is when she isn't sick.

Our other gift this week-end was the SUN!! This has been a long month or two of rain and we were so excited to see the sun this week-end, with relatively warm weather. Today it was 70 degrees. Of course, we made the most of it this week-end with trips to the park, the zoo, sidewalk chalk, bike rides, and shorts. Unfortunately I don't think Taylor felt great at the zoo, but the big kids loved seeing the animals, particularly the gorillas.

I think I've also had a breakthrough of sorts. Over the past two weeks, we've had the pleasure of seeing several friends who have children younger than Taylor. While I'm always thrilled to see our special friends, I've worked on not being sad for Taylor as kids much younger than her are more physically capable. Our little niece, Kyla, visited from Utah and she was so much fun to play with. Taylor enjoyed seeing her too and they played with Taylor's toys together. At only 8 months, Kyla is a mover and a shaker and will be up and walking before we know it. Thankfully, my breakthrough came the previous week-end, when some other friends were visiting with their daughter. She was about 14 months and really on the move. This is usually my favorite age - I love the toddler stage and all the excitement and wonderment that goes along with it. While watching our friend's daughter explore, at first I was sad for Taylor as she sat and played with her toys - watching her friend. Then, I realized how lucky we are because we still have deep faith that Taylor will reach that stage too. Rather than be sad that we aren't there yet, it's much more helpful to recognize how fortunate we are because we believe Taylor WILL get there. While not exactly on the same time table, what a gift we have to look forward to and how sweet it will be. This is my new mindset and I want Taylor to feel this optimisim and the belief we have in her - not any sadness. She is a gift at every stage.

The sun has also helped us look forward to summer - the days are longer and we're looking forward to a wonderful summer for all of us.