Playing at Home

{my beautiful girl}{Crawling with her knees}{my little man}{my, ahem, prince}{Gabriel at bedtime}{irresistable}{So Isabella. Nude except for shiny pink shoes}{Ariana sweet}

{Isabella's reaction to a dramatic scene in 'Mulan'}

Perfect Pet

We have enjoyed the company of our wonderful dog, Chewy, for nearly six years. Chewy has always been the perfect family dog. He is patient, loving, playful, loyal, and gentle. He is everything that anyone could ever want in a dog (he plays fetch, obeys commands, loves hiking, is housebroken) and then some (he doesn't go on carpet or furniture, he is hypoallergenic, doesn't shed). As much as we would wish for Chewy to live out the rest of his years with us (we know that we could never find a dog that compares to him), we know that it wouldn't be fair to him. Like all dogs, Chewy deserves to go on regular walks, have fun outings, and would love the attention of his owners. Regrettably, we have not been able to offer this to him recently. Provided the right person or family come along, we may be willing to place him in a new home. We plan to be quite discerning, because he is not just any dog. But if you think you know someone who might be a match for a perfect best friend, then please let me know.

{Chewy with my sister}{Chew E. Baca: Soft Coated Wheaten Terrier, 6 y/o, male}

New Things

Here are some (totally new) things that Ari's been doing lately (since my last post-Stem Cell update):

• Ari has been saying "Dada". We are now sure that she is saying his name and not simply making the sound. She looks right at Jake, waves in his direction, and says "Dada!".
• Instead of just rapidly turning pages in her storybooks while we're reading to her, she will wait until we're ready to turn the page, then softly turn it upon our request.
• When I ask Ari to "count" objects in her books or in front of her, she will point to each one individually with her index finger, as if counting them.
• Ari has been more interested in playing cooperative games like catch and "fetch" (I don't know what else to call it; she loves to chase a ball).
• Ari has been doing great with potty training! She has been staying dry for much longer periods of time (often several hours) between potty trips! Last night, she even used her sign language to tell me "potty". Then, I asked her if she wanted to go "potty" and she nodded a big 'yes!' I rushed her on, and she went immediately. She was so excited about being able to communicate this to me!
• I often pretend my hand is a spider and chase Ari with it (she thinks this is hysterical). The other night at dinner, she decided to get me back by making her hand into a spider and inch it towards me. She is turning into a big girl!
• Ari has found a way to back herself off the couch safely (instead of just falling off). Whenever she gets bored with the movie that's on (she tires of movies much easier than Gabe & Bella), she'll just climb down and crawl over to me while I'm cooking.
• The other day, Ari came down the stairs completely by herself for the first time ever! She turned around and backed herself down each step, very controlled, maneuvered the landing, and then backed down the last steps. While I was right beside her the whole time, I never even had to touch her! Then she crawled all the way down the long hall to see Daddy in the family room. She was so proud!

Snap!

In case you didn't read the previous post all the way through (not that I blame you), I got the D-SLR camera that I've been wanting from the Craigslist proceeds of Gabe & Ari's cribs: yay me! Four days later, Gabe dropped it, and ruined the lens: Waaaa! It is in transit to the camera repair man to see if it is fixable. If not, my wonderful friend (and a wonderful photographer) Rebecca has offered to lend me her kit lens until I can afford to buy a new lens for my camera: Yay again! Here are my first trial photos (for comparison purposes only -- when I eventually figure out what it is I'm doing):

February Milestones

As you know, Ariana got Stem Cell Therapy this month! It's been almost a year since we decided to go and started fundraising. I am so happy that we were able to do this for her! Thank you so much to all of our supporters and contributors. We wouldn't have been able to do this without you. That said, I have mentioned that Ari has been showing some signs of improvement this month. She seems to be getting stronger, as demonstrated by her more advanced belly crawl (pulling her knees up under her more regularly). She is also showing more interest in standing, and she has been doing a good job of supported standing as of late. Because of these recent developments, I started looking into getting a loaner gait trainer for her, so she could be upright and mobile at the same time. We found two! One is a Rifton Pacer and the other is the Pony Walker, both of which are sitting in our front room alongside her stander at this moment. (I am growing to be at peace with the fact that my downstairs resembles a special ed classroom). The Rifton Pacer, which we obtained from Share The Well (a local lending closet) is still quite advanced for Ari. She leans foward quite bit in it (incorrect posture), and it gives way too much resistance for her to move it independently. Also, it's not very supportive and it allows her to cross her legs when she steps. We expect her to grow into it as she improves more. The Pony Walker, which we borrowed from UCP, on the other hand is great for Ari. Still far from perfect, it provides her the opportunity to stand, while weight-bearing in correct positioning, as we pull her walker. When we do this, she moves her feet in a reciprocal "stepping" motion, imitating walking. While she isn't moving the walker on her own yet, she is learning the cause-and-effect relationship between stepping and moving. Hopefully, it will just be a matter of time before she develops those muscles enough to move the walker without assistance. Ari's PT really likes it, and that's saying a lot. Here is Ari in the Pony Walker:

It's too early to say if this will stick or not, but Ari has started babbling some other consonants and sounds. Whereas, before Stem Cell Therapy, everything sounded like "Aba", "ba" or "bidu-bidu", now Ari has been heard on several occasions, saying things that are much closer approximations to words that she hears or other words. She has said "Dada" a few times, and we haven't heard that word in at least six months. She's been making the "d", "g", "p", "m" (she's said "mama" for several months now) sounds in addition to the "b" sound. I am not ready to say that she has any new words in her expressive vocab, but I think we're moving in that direction. Her receptive vocab also seems to be improving. More and more, I feel reassured that her cognition and receptive vocabulary is very close to age level or even within normal ranges. The other day, I wanted Ari to drink her soy milk (which she can't stand). Within hearing distance of Ari, I said to Bella, "Bella, why don't you watch how Ari drinks her milk? She is such a big girl. She drinks her milk all up! You should try to drink like Ari". Ari, overhearing me, beams and immediately starts chugging her milk, taking breaks only to flash a huge proud grin in between sips. That's definitely something I three year old might do, I think.

Speaking of Ari's cognition, we have been working on potty training. I have been going at it a little more seriously. Ari has been going pee in the potty on a pretty regular basis (4-6 times a day), and number two in the potty basically every time. I happen to think that Ari's stem cells may have had an effect on her constipation issues too, because this has not been such a problem lately. Time will tell, I guess. In any case, I'm really proud of how well she's been doing, and while we have no idea how long it will take for her to be fully potty trained, I believe that she is at least capable of letting us know when she has the urge to go potty. So that's what we're working on right now.

Isabella has also been doing tons new this month. She is talking up a storm and, looking back on old posts from when Gabe was 17 months old, I can't believe how much more she is doing that he was at that time. It must have a lot to do with the fact that she has him for an older sibling and that she's a girl, but it's still really crazy. As of the end of February, Bella had about 70-90 word vocabulary. Bella speaks in up to two-three word phrases, and says things like "a we voo" (I love you), "I no wanna", "dink milk pease". She has pretty good manners for a feisty little toddler, and often says "tank you" without me reminding her. I love hearing the cute and funny things that she says. Although, as sweet as it is, I often find myself reminiscing about when Ari was that age and wondering what little things she would have said if she could talk.

In addition to talking more, Bella has started running and trying to jump this month. It's pretty cute when she tries to jump, because she'll reach her hands up above her head and say "ump! ump!" as she bends and straightens her legs.

Isabella is really interested in sitting on the potty (she even went once!). She says "potty potty" and walks over, pushing aside anyone in the way as she goes to sit down. Then, after about a minute or two, she'll say "all done!", get up, and clap for herself.

Bella is such a little girly girl. She loves trying on hats, shoes, headbands, sunglasses, purses, and costumes. You can always hear her coming towards you as she shuffles along in shoes too big for her or on the wrong feet. She gets particularly excited about sparkly shoes, and will scream "Nooooo! Shooooooooes!" if anyone attempts to take them away from her.

She has been wearing her prosthesis every day, but she still has not quite caught on to it. From what I gather, she is one of the younger patients to ever have gotten a myoelectric prosthesis, so I think she has a good a chance as any of being able to utilize it in time. She is very tolerant of it, and even enjoys wearing it, which is great. Practice makes perfect.

Gabriel has been very much a three year old this month. While this means he can drive me insane with his whining and his demands "no, you get it for me, mommy. I can't reach it," (object is one foot away from him), it also means he is acting more grown up every day. Gabe loves to play pretend. It's amazing to watch his imagination in action, and I feel so blessed to be able to be able to stay at home with him at this juncture in his development. I also see him growing more mature, and having more complex emotions, such as sympathy or regret, on a more frequent basis. For example, the other day, he was chasing me, saying "I'm gonna getcha Mommy!" and I was really running and playing hard. Well, being the ballerina that I am, I ran into the playroom, tripped on the gymnastics mat, and fell right into seagrass couch, really (I mean really) banging up my arm. Gabe was so worried about me and kept asking me "Are you okay Mommy? Mommy, you have an owie! You need a bandaid. Wanna get one? Want me to get a bandaid for you?". It was so sweet. Today, he actually broke my new camera (uuugggghh!), and I really wanted to whack him, but that feeling slipped away when the first thing he said to me when he got up from his nap was "I'm sorry I broke your camera Mommy." I didn't even know he knew that my camera was broken, and that he was the one responsible.

Gabe has also started reading this month. He isn't reading whole books or anything like that yet, but he is sounding out words and putting them together, "p-o-t, POT!". I'm sure he could read one of those level one books, because he knows most of the sight words by now, but he gets bored/frustrated/exhausted after the first page or so, and then he starts guessing words without sounding out the letters. When he does that, I just let him quit on a good note, so he only has positive associations with reading. He starts preschool in August at a different preschool than we planned, but we are really looking foward to it. He loves going to Ari's school, even if it's just for five minutes to pick her up. He loves watching the kids walk single-file lines and play basketball. He has even tried to join in their basketball games (they are what, 3rd graders?), and he doesn't understand why I won't let him play with them. He is so confident, and I love it! I was such a timid child that it feels great for me to see my kids face the world with their heads held high and smiles on their faces. I tell him that those are the big kids, and he argues "I'm a big boy Mommy! I'm a big kid!".

This has been the first month that Gabe has been able to ride his truck (Ford F-150) since the weather changed, and he has grown into it quite a bit. He is better with steering and keeping his foot on the gas. His fine motor has always been he area in which he is weakest, but we're working on it, and he's made progress. Can he ride a trike yet? Don't ask. But, for some reason, that doesn't mean that he can't catch and throw. He has always had a pretty good throwing arm, but it's gotten better and he can toss a frisbee well in addition to a football or a baseball (using appropriate hand positioning). More impressive still, he can catch these things too!

Gabe has also been working on coloring. When he free draws, he mostly draws circles, but he is starting to draw other things when asked (a circle with a line = a lollipop). I love that he now names his drawings, which I have started saving. In coloring books, Gabe tries to color items their appropriate colors and stay within the lines. He used to have difficulty putting enough pressure on the crayon, but he's outgrown that too. Hopefully, we can start working on tracing letters by the time he starts preschool.

This month, Gabe started staying in bed at night. This didn't even come about until mid-month, but I'm so relieved that it did, and Jake gets all the credit. Gabe was getting out of bed about 10 (or more) times a night for a few weeks there, and I was beginning to go insane. We would hear the pitter patter of his feet in the middle of a movie at 11 pm or awaken to see his dark figure staring at us while we slept. Really, really freaky and annoying. He didn't just bother us either. He would torment Ari and Bella too. Jake would call him the "house troll". I got to a point where I was about to call a locksmith to have him put locks on his doors (to the hall & the bathroom). His doors lock from the inside, which he knows how to undo, even in the dark. Then one night, Jake took away his blankie and bear. I had to leave the house and went to the gym, because I couldn't stand to hear Gabe cry so pitifully over his missing bedmates. Gabe was cured after that (besides having to go potty of course).

Thats the month!

Mommy Fail

Ariana and I spent the better part of Monday in the ER at Banner Desert again. Only this time, Ari wasn't sick (neither was I).

Monday morning, I went to give Ari her regular shot of Lovonox (basically Heparin; blood thinner). I prepped the syringe and cleared the bubble. The medicine comes in prefilled syringes with about .65 mL of Lovonox. Ariana's dose is .14 mL twice a day. So every time I give her a dose, I have to do a waste of about .51 mL before I give her the shot. Normally, I never put the syringe down on the counter without first doing the waste. This time, I got distracted somewhere between prepping the syringe and doing the waste. I'm sure you can tell where this is going. When I got back to it, I picked up the syringe and, out of habit, gave Ari her dose. I always give her shot really quick (and, let's face it, 0.14 mL is not a lot of volume), and as soon as I pressed that stopper, I knew I had really messed up. Ari ended up getting about .45 mL of Lovonox that morning -- almost four times her prescribed dose. My heart sank. Nothing hurts worse than when your baby is worse off on account of you. Those are the mistakes you never forget.

I called the doctor, and he of course told us to go to the ER. He called ahead to make sure we wouldn't have a wait. At the hospital, Ari had some blood drawn to test her levels, and she was given .75 mg of Protamine Sulfate (antidote to heparin) per every 1 mL of extra Lovonox she got (adjusted from 1 to 1 ratio for the time lapse). While it's never a good thing to be in the ER, this hospital experience has been our best ever. Our nurses (John, and charge nurse Rosa) were amazing. Everyone just doted over Ari and treated her like the little angel that she is. Our nurse got Ari's IV in on the first try, and it was perfect. Ari hardly fussed at all throughout the whole experience, and she loved her nurse so much that she didn't even mind his rubber gloves. "Dr. Mark" was also very good to us, and took all of my questions into consideration. Sorry to blab on and on, but I feel that with as much information as I share when things don't go so well, I need to give credit when it's due and things go just swell.
We were discharged at around 5:30 PM, and everything has been fine since. Ari has been behaving normally, and we were told that we could resume her anticoagulants as of last night. On a side note, Ari has been on Coumadin (oral blood thinner) since the get go, starting on a dose of 1.5 mg/day (according to her weight). Now, she's on 3.5 mg/day and, would you believe, she isn't even within the therapeutic range yet? Her INR should be between 2 and 3 and it's still 1.3 (as of last check in the ER). That's the same INR as when her dose was 1.5 mg. So wierd.

The Bus

Ari got to ride the bus today. It was a practical decision I had to make (bus ride on Wednesdays only for now). I was sad to put her on the bus. I thought she'd be sad too. But she WASN'T :). She was one happy little lady. She waved and smiled and blew me kisses! She made my day! Gabe was the sad one. He threw a fit, in his pajamas, face covered in peanut butter from an unfinished lunch, on the school bus steps. It was a sweet moment nonetheless.

Looking Strong

Just before Stem Cell Therapy, I remember lamenting to myself at how Ari had largely fallen into the pattern of army crawling using only her arms, while dragging her legs and feet behind her. She would, occasionally, bend her knees and do a little wiggle, but she wasn't using her legs to move.

Ari is now using her legs and bending her knees to help her belly crawl. She hasn't acquired any new skills in the past two weeks since her therapy, but she has improved on the skills she already has. She just looks stronger. Even Ari's PT, who is as objective as they come, commented on Ari's "more consistent" use of her knees to assist in her crawling, and said she's noticed a definite, recent improvement. She is also using both knees quite a bit more regularly, whereas before she tended to favor her left.

Ari's sitting (and especially her bench sitting) are looking better than ever. She is wanting to stand more, while holding on to something (like my hand or a gate or a table), and her weight-bearing looks awesome! We hope that she continues to progress at this rate for at least the next six months. Keep it up Ari!