Ari is a Preschooler!

Little Ariana had her first day of preschool at Fulton Elementary School today! She loved it! The teacher, Miss Jacquie, said that she did so well. She was so impressed how Ari loved music (she even sang) and painting, and at how Ari let her know which activities held her interest and which ones didn't. She said that Ari was so happy in class. Ari had been looking foward to preschool for several weeks. Every time I'd mention going to school, she would get a huge grin and give me big nods 'yes'. This morning, I had to wake her up to get her there in time (starts at 8 am!), and she gave me the stink eye. But as soon as I told her that we were going to school, she starting kicking and holding her arms up for me to lift her up. Such a bright spot in my day! I don't even think she missed me for a minute while she was there. We can't wait to go back tomorrow. Our schedule is T & Th 8-10:30am, and W 12-2:30 pm.

A Word About My Blog

For the record, I just want to make known the purpose of my blog. My blog is akin to a public journal. A journal because it is a reflection of my experiences, and my reactions to them. I put my thoughts, my emotions, and everything else personal to me out there. My audience is intended to include my extended family, friends, and a large community of supportive others. My life is, quite literally, an open book. I keep it open, because I want to help provide information, support, a sense of community, and hope to others who might be experiencing something similar. I, in turn, benefit from the support, encouragement, and advice of my readers.

Should anyone decide to read my blog for purposes other than those aforementioned, please bear the following in mind: The status of our life situations changes on a week-to week, and sometimes even day-to-day, basis. Therefore, the blog is, likewise, subject to change. My blog is not a medical journal, and is not always necessarily accurate or factual 100% of the time. A lot of what I put on my blog is what I hear other people (doctors, therapists, etc.) say to me. Lastly, I fire off posts in the heat of what we are experiencing. I don't "sleep on it", so to speak, before posting. Everything written has my subjective, emotional bias. My blog is not objective, nor do I ever pretend it to be.

Thanks for bearing with me. That disclosure was long overdue.

Anti-Coagulation Therapy

Today is Ari's 7th day of anti-coagulation therapy. Right now, she is on Coumadin 2 mg/day and Lovonox .14 mg 2x/day. She should only be on the Lovonox injections for the next week, at most, while the Coumadin reaches therapeutic levels in her system. So far, Ari has been doing okay with it. Ari has only had one nosebleed (today), and very minimal bruising at her injection sites. The first night (trembling & fever) must have been something else, because we haven't seen anything like that since. At our last few appointments with the Hematologist, Ari's doctor's really seem to have toned down their warnings of doom and gloom over the anti-coagulants. They don't see a need for any activity restrictions or added safety precautions. Dr. Shah informed me that 1 in 20 children have any bleeding at all, including minor bleeding like nosebleeds, (in contrast to what I remember hearing before, that 1 in 20 children hemorrhage) on blood thinners. This time, he said that a much lower percentage experience a major bleed. A relief on my end. Ari has also been a champ about getting her injections! She barely makes a sound. I am so proud of her -- she has definitely been doing her part to make my job easier. They want Ari's INR (Coumadin level) to be between 2.0 - 3.0. On Monday, it was 1.2 (baseline 0), so they raised her Coumadin dose from 1.5 to 2 mg/day. Hopefully, by Friday (her next INR check), she will have reached therapuetic level, and she can go off the Lovonox.

Stem Cell Update

Thought I'd post a couple things we've noticed since Stem Cell Therapy. Nothing, so far, has been very dramatic or even something that I'm even sure is a result of the therapy yet but, it's worth mentioning. Ari seems a little stronger. She is holding herself in 4-point (hands-and-knees) position longer (we're talking seconds), and her bench sitting seems better. She has an easier time pulling to stand (hands held) from a bench sit or a side sit than she did before. And Ari isn't sick. Isabella and Gabriel are quite under the weather with bad coughs (Gabe has bronchitis) and a bad cold. They have been since we got back from our trip nearly a week ago. I don't think I can recall a time in her life when one of my other children was sick and Ari wasn't. Provided all her stem cells don't go misdirecting all their efforts at preventing illness, Ari's bout of health tells me that her new stem cells have the power to do something really good.

They're THREE

I can't believe it. Three years old?! That's, like, half-way to six! My fat babies with the triple chins and the jowls for cheeks, the ones who coo and squeal and need me... are little KIDS now. This year, the twins' birthday fell right by our Sea World and beach trip so that got to count for part of our celebration. On their actual birthday, we did some celebrating at home with cupcakes (this year homemade), and they each got a present from Mommy & Daddy. Gabe got a Peter Pan costume and (felt) sword, and Ariana got a parachute. They both love playing with their gifts (we are, without a doubt, getting the good out of that sword), so that makes me Happy Mommy. In line with our tradition, the birthday girl dressed like a princess all day. Gabe got to wear his Peter Pan costume all day too. I'm planning a little party in a couple months with some of their friends, but for now, we're done celebrating and we're getting ready for the next thing... Ari's first day of preschool on Tuesday! I love you Gabriel Pierce and Ariana Elise. You are two of my (four) favorite people in the world. Every day with you brings sunshine into my life. I never knew I could feel such love until the day you were born.She loves how she can really play with this. But her favorite thing to do is lay underneath it when we are flapping it above her.ohhhh!About to embark on the Princess/Pirate ParadeI had to throw in a picture of the only baby I have left :)

Stem Cell Trip

We just got back from our trip last night (Tuesday) at around 11 pm, and so this has been my first free minute to update. Overall, the trip went really well. We got there safely, no sickness while we were there, beautiful weather, a smooth stem cell procedure, and we had a lot of fun in the process. I would say that we had some good luck! We drove down to San Diego on Friday, February 12, and we got there in the evening, about dinner time. The kids traveled well, as they usually do -- they trust us that when we decide to take a road trip, it is usually worth it for them! We had been telling them all along that we were going to Sea World on Saturday. But what none of us knew was that our hotel offered a two days for the price of one ticket, so we got to spend two full days at Sea World as a family of five, for the price of two adult tickets (since the kids are still free under 3 years old!). And we really made the most of it; we saw every exhibit and almost every show. The kids loved it. They were especially enthralled the Shamu show. They all did the "Shamu Shamu" chant and hand gesture, and Ari burst into hysterical laughter every time Shamu splashed the audience. I've never seen her laugh so hard... I, of course, was crying (happy tears) the entire show. We stayed at the Comfort Inn & Suites Zoo/Seaworld. The room was divided by a sliding french door, so the kids had their own separate area that fit a pull-out full bed and a crib. Gabe and Ari shared the bed, and loved it! I was shocked that they slept so well that way, but they were so worn out from the day's activities, that we all pretty much crashed each night. On Monday, our driver, George, picked us up from our hotel around noon, and drove us down to Tijuana, Mexico. We traveled without any troubles, transporting our stem cells along with us on dry ice from the States. After we got settled in, the nurse attempted to place Ari's IV for the stem cell transfer. As usual (Ari is a hard poke, remember), this took 6 tries. On the 6th stick, the IV was placed. Meanwhile, Dr. Ramirez gave Ari a mild sublingual tranquilizer to calm Ari's anxiety while she was getting stuck. As usual (Ari has some crazy adrenaline, remember), Ari didn't allow herself to give in to the effects of the drug until after the IV was in place. But then she slept through the remainder of the procedure, which did help things to go smoother. Through the IV in her foot, Ari received mannitol, a sugar-based drug that is meant to open up the blood-brain barrier to help the stem cells travel from her blood stream to her brain tissue. Following that, Ari got three vials of stem cells, each containing at least 1.5 million stem cells. The total number of stem cells that she received totalled 4 million or more! Gabe and Bella spent most of the time looking out the window, eating lollipops, watching a movie, and entertaining the medical staff. Gabe did try to awaken Ari with a kiss a time or two and was perplexed when his prince kisses didn't work on the princess. We were at the clinic a total of about two hours. Then we were on our way back to California. It was a relatively simple procedure, and it went as well as we could have hoped. The doctors said that, should we see results, we can expect to see them any time between now and six months from now. We have not seen any changes so far that are dramatic enough to attribute to the stem cells, but Ari was very active these past two days; she was full of energy and in good spirits. Should Ari show improvements, we will plan on making a trip back for more stem cells. If no improvements can be attributed to the therapy, then we will focus our efforts and funds elsewhere from her on. We will be able to make that call in about 6 months time. On Tuesday, instead of coming straight home, we decided to make one last pleasure stop and go to Mission Beach. We got a late start on the road, but it was sooo worth it! It was just so much fun! It was Ari & Gabe's second time to the beach (the first was when they were Bella's age), and it was Bella's first time. The kids loved running in and out of the waves. We weren't prepared with bathing suits, so everyone was half-nude, soaked, and sandy, but I think that made it more fun. It was the perfect end to a great trip.

Well, our first stem cell experience is over, and I'm so glad that we did it! We are very hopeful that Ari will make gains as a result of the treatment. Just the thought of it is amazing. But do I feel relief, like the load has been lifted? No. I still feel stressed. This may seem like par for the course, but I don't think I'm without reason. There's a lot that's still on our plate. We have diet restrictions such as no red meat, no dairy, no acidic fruits (especially mango, papaya, pineapple), no sugar (opens the blood-brain barrier), nothing too warm or spicy, limit wheat, increase green veggies... basically, we are trying to avoid any foods that may cause inflammation and distract the stem cells from their purpose. She is supposed to be in optimal health, no stress, live in a bubble. It's not going to be easy. Just yesterday, Ari found Gabe's cup of regular milk (she's drinking soy milk right now) and chugged it. She later got a hold of two pieces of my Valentine's Day Godiva chocolate, wrapped in aluminum foil, and ate them both...aluminum foil wrappers and all. Now the sugar alone is a concern, but heavy metals (even trace levels) are toxic to stem cells. That added to the Lovonox injections twice daily, and we don't know what effects that has on our chances of getting the results we're after. We are playing the wait-and-see game right now. I know that despite how much I want it to be, despite how much everyone is aching for it to be, this is not going to be the "and they lived happily ever after" ending to our story. While Ari may have improvements (which is our hope; a miracle in itself), she will never have a "normal" life, and this is just one step of many that we'll take in order to improve her quality of life by just a teensy tiny bit. I know this may sound disheartening to many, but for all of us who stand by Ari, this is her road, and we plan to walk it with her... every difficult step of the way. This morning, Ari began her anticoagulation (blood thinner) therapy in an attempt to stop the growth of the new blood clot in her brain (and possibly dissolve it, I've been informed). She got a shot of Lovonox this morning, another this evening, and a pill and a half of Coumadin this evening in a fig newton. She hates the shots, of course, but those shouldn't last more than two weeks (20-28 shots in all), so that's not my main concern. My main concern is that Ari was shaking and trembling tonight, came down with a fever (she has a cold, so it may be related to that), is grunting, starting to look pale, accelerated heart rate, and she is getting large bruises on the sites where the failed IVs were placed on Monday. I called the hematologist on call... twice, and she said just to monitor her closely tonight, but she doesn't expect that the Lovonox could be causing that reaction, because she has only had two doses (not even supposed to be within therapeutic range yet). So... this is the update. Thank you all for your prayers and well wishes. I will keep you posted.

Ari's New Wheels

Did I mention that Ariana's new wheelchair came in??? It's super cool! I couldn't have asked for better (lighter maybe, but not better). She loves it! We have yet to take it out, because we are saving it for preschool and church initially. We plan on branching out and using it in the community once Gabe no longer rides in the stroller at places like the zoo, mall, amusement parks, etc. That way, we'll just have the lightweight umbrella stroller (for Bella) and the wheelchair to push.

Wish us luck!

We leave for San Diego, CA tomorrow. God willing, Ariana's Stem Cell Therapy will be on Monday, February 15. She will be receiving her 4.5 million umbilical cord blood stem cells via IV in her arm (as opposed to formerly through a catheter to her brain). Please pray for Ariana's healing. We are finally here.

Doctor Decision

Dr. Shah (hematologist) called me today after having contacted another doctor who works in the pediatric thrombosis center at the Hospital For Sick Children in Toronto, Canada about what to do with Ari. That doctor told Dr. Shah that the risks of treating a clot that has not done any damage vs. leaving the clot alone are essentially the same. However, the doctors in their program routinely choose to treat every blood clot. Dr. Shah was very hesitant to prescribe the same (or make any decision for that matter), seeing as how Coumadin/Lovonox (blood thinners in general) are dangerous drugs. He wanted to do what I wanted him to do. I told him he was on his own in this, because he is the expert and I am not. I kept my opinions entirely to myself. He fought it a bit, acted exasperated, and told me that I was putting him in a very difficult position. After several pregnant pauses, he decided to go ahead a treat Ari. He wants to treat her for 3 months, starting her on Lovonox (injected) and then transitioning on Coumadin (oral). He said he wanted to have her admitted to the hospital when we return from our trip to start her on her anti-coagulation therapy. This was the only thing I argued, asserting that I am perfectly capable of injecting her and managing her from home. I promised that I would take her for her regular blood draws at the exact time prescribed, and I informed him that I managed my own anti-coagulation therapy during my last pregnancy. He said that it would be up to Ariana's insurance as to whether or not they'd require her to be admitted to the hospital for treatment.

I kept my opinions to myself to help the doctors maintain objectivity (and liability) for their decisions. But opinions, I have many. How do I feel about the new plan of care? I feel freakin' scared. I'm scared for so many reasons. Here are a few. I'm scared because these drugs are like poison to the body (just a few steps up from Chemo). Here are the serious, life-threatening side effects that we have to look out for:

Severe allergic reactions (rash, hives, itching, difficulty breathing, tightness in the chest, swelling of the mouth, face, lips or tongue); back, side,muscle, joint, or stomach pain; black, tarry, or bloody stools; blood in the urine (pink or brown urine); bloody or coffee ground-like vomit; chest pain; decreased urination; dizziness; fainting; fever; numbing or tingling; pain, unusual color, or temperature change in any area of the body; pale skin; purple, dark, or painful toes; shortness of breath; skin sores or ulcers; stroke symptoms (e.g. confusion, slurred speech, vision problems, one-sided weakness); sudden, severe pain in your legs, feet, or toes; trouble swallowing; unexplained swelling; unusual bruising or bleeding (e.g. nosebleed, bleeding from gums, coughing up blood); unusual headache or weakness; unusual pain, swelling, or discomfort; wounds or sores that do not heal properly; yellowing of the skin or eyes.

Did you notice how many of those side-effects are totally subjective, and rely upon patient report? How in the world am I to know if Ariana is experiencing pain, confusion, slurred speech, stroke symptoms (which she already exhibits), tingling or numbness, tightness of the chest, dizziness, headache or weakness, trouble swallowing, or temperature change in an area of the body when she can't even talk to me??? Like most infants and even toddlers, Ari cries several times a day for different reasons: hungry, tired, frustrated, didn't get her way, bored, discomfort, constipation, etc. Just when I think I have those figured out, I now need to find out a way for her to communicate "I'm feeling numbness"? That's really scary for me. I'm scared of having to inject Ariana, of having to take her to the hospital, of her having to become a human pin-cushion and her wondering if she's being punished for something. I'm scared of traumatizing her further. I'm scared that by treating the clot with anticoagulants (to prevent it from growing, not to break it up, remember?) that we are only putting the clot growth on pause, and as soon as we take her off treatment in three months, that the clot growth will resume and she will have a stroke anyway. I'm scared that she may fall into the one in twenty children (reported by Dr. Shah) who has a hemorrhage and it causes a stroke... or death. I'm scared that this decision wasn't really based on anything more than a coin toss and a risk-assessment of liability (this decision to treat is closer to a "standard of care" than the other option not to treat). Blood clots have always been considered to be almost non-existent in children (except for post-trauma), even rarer that a blood clot be discovered that has not caused major damage already, so there is really no precedent for what Ari is going through.

As for Stem Cell Therapy, we will be going, but the procedure will be different. Whereas before this happened, we were planning on having the stem cells administered via a catheter to her brain through the femoral artery, we are now going to have the stem cells administered through a regular IV in her arm. We are not going to have unnecessary surgery performed on Ariana, which would put her at a higher risk of forming blood clots. We have made this decision despite the fact that the treatment may not be as efficacious as it would have been with the catheter. That will just have to do. Oh, and the cost of the procedure will now be $12K instead of $17K, so we plan on using the remaining $5K on future stem cell therapy (should she show results) or other alternative therapies if she doesn't show results.

Right now, Ari is doing fine. We seem to be in the eye of the storm, but despite the fact that she appears the same, we know that things aren't "normal"; nor will they ever be. This is Ariana's second blood clot in her brain in fewer than three years. Jake and I feel pretty terrible about this, and we don't quite know how to deal. Some people complain that as soon as they finish the laundry, it seems like they turn around to find that the hamper is half-full yet again -- never-ending cycle. We feel the same way when it comes to Ari's health problems... it never ends, and it will never end, and we will never be able to feel free from having to worry about her. Like we are staring down the barrel of a gun, just waiting for our fates to be decided for us.

We need a miracle for Ariana; next week (stem cell therapy), next month (anti-coagulation therapy), and every day for the rest of her life.

January Milestones

This January, Ariana & Gabriel turned 35 months, and Isabella turned 16 months. Time is just blurring together for me these days, so I am having trouble remembering what happened when. Bear with me.

This month, Ariana's biggest change milestone development is that she has started potty training. While we have been letting her go number 2 on the potty for the past several months (whenever we caught her in time), we've only recently started a potty schedule for her. Right now, we're still in the very earliest stages, but she has been sitting on the potty about 4 (sometimes 5) times a day. Up until the last week in January, she would sit there, but nothing would ever happen in spite of our encouragement, the running faucet, etc. But the light suddenly turned on for her, and now she very rarely misses the opportunity to go "pee" in the potty when she's sitting on it. After she goes, she usually yells something like "aha!" and smiles wide or gestures so we know that she's gone. Then, of course, our singing and cheering begins (we sing a "hooray for Ari" song & a "pee pee in the potty" song), and she beams with pride.

Ariana has started drinking out of a big sippy cup without a handle. She has been wanting desperately to make this transition to the big cup, and she finally has (barely) enough strength in her left hand to hold it while she's drinking. She loves it, and she will complain whenever anyone gives her the short sippy cups with handles.

This was the first month that Ari was able to sit in a wooden restuarant high chair on her own. We have waited so long for this, so we are really happy for her. We still prefer to take her feeding chair along with us because of the extra support it provides, but it is a great milestone nonetheless.

Ari has settled in to her big girl bed very well. She still plays with the blinds and often finds her way out of her covers at night, but she enjoys sleeping in her bed, and she hasn't fallen off since the first time. With her big bed, big sippy cup, new wheelchair, and new Dora toothbrush, it sure seems like Ariana is growing up. Speaking of growing up, Ariana starts preschool February 23 (doctor permitting)!!! And you can be sure she'll have a brand new backpack, new AFOs with butterflies, and new shoes for her AFOs (I'm thinking Vans or DC Kids) to boot.

Gabriel has grown up so much in the last month too. I often find myself cracking up at the things he says. He's been turning into his own person before my eyes. This kid has opinions about everything, but it's amazing to me how he is still so affectionate, eager to please, and loving. He begs Jake for "a hug, a kiss, and a squeeze!" every morning, several times, before Jake leaves for work, promising "Last one Daddy!" each time. But as tender as he is, he is every bit a boy. Lately, he is most interested in Peter Pan, sword fighting (which he does with whatever he can find: empty paper towel rolls, strips of foam from the floor puzzle, Daddy's tie), football, monster trucks, and Cars (of course). He loves watching movies and memorizing all the lines (especially of the bad guys, don't ask me why). He also has a great sense of humor -- I love hearing him laugh.

Gabe is just entirely entertaining lately. He loves memorizing and reciting all the lines from his favorite movies (especially of the bad guys, don't ask me why). I often wake up to the sound of him pretending to be Captain Hook, Hook's crewmates, dognappers from 'Air Buddies', or other disney villians (and sometimes heroes) over the baby monitor. (And yes, we still use a baby monitor so that we can hear him yell if he has to go potty in the night or if he is up playing when he's supposed to be asleep.) He loves to sing songs from his movies -- Peter Pan is the current fave. Gabe has also started memorizing songs from the radio, which is both charming and frightening. It's pretty dang cute to hear him sing top 40 songs with all the enthusiasm he can muster, but it also means that I need to be more careful of which music I let him hear.

This month, Gabe has started dressing and undressing himself for the first time. He's always been a little lagging in the self-help area, but he's definitely making progress. He is really pretty obstinant and always wants to take off his own clothes without assistance (but I have to chase him down to even get him to comply).

Gabe had "preschool tryouts" this month, because we are trying to get him a spot in an all 4 and 5 year old preschool class. He did really well with exhibiting socially appropriate behavior, following directions, attention span, conceptually with his pre-reading skills, but his fine motor skills fell short of the age group. So we've been working on it. Gabe has gotten much better at fine motor skills this month! His coloring has much improved. He is using greater pressure with the crayon and is making progress at coloring in the lines. He is also trying to color things using the correct colors (i.e. red apple). Gabe has also learned how to use the sissors, which is really cool. He is not a pro (can't make consecutive cuts yet), but he can make many small cuts. His block building skills have really taken off too. He now constructs "buildings" for me, and he gets very possessive of them when his sisters try to help him (take his blocks).

Isabella seems to grow up right before my eyes. She is talking up a storm now. I remember thinking that Gabe had a large vocabulary at 16 months, but Isabella's is at least three times what his was (probably because she's a girl). Bella has probably 40-50 words in her vocabulary, maybe more. She approximates any new word she hears us say, and she definitely makes her opinions known to everyone :).

Bella has also started singing. She sings "twinkle twinkle little star" and parts of a few other nursery rhymes and finger play songs. She dances and tries to do the motions to the finger plays, and it's super sweet. Cutest of all are her facial expressions as she does this. Isabella has such an expressive face -- she mimics facial expressions that she's seen and she performs them all the time, especially when she's trying to envoke laughter in her audience. She is our little actress.

Isabella's interests right now include: shape puzzles & shape sorters, feeding herself with a spoon (she loves food), her new prosthetic hand, shoes & boots, riding the plasma scooter (she fights with Gabe over this), making messes, going to the park (especially sliding down the big slide feet first on her tummy), play dough, emptying and refilling containers/bins, Baby Einstein & Brainy Baby movies, following her big brother around, and loving her stuffed animals.

Post-Seizure Update

The panel of radiologists have returned with a diagnosis, and it isn't great. Ariana does have a new clot in her brain. There has not been a stroke, but a stroke still could be imminent should the clot continue to grow. The head radiologist (Dr. Kuasha [sp?] ) called to me today, along with the Patient Care Liaison for Radiology (Beth Walker), director of Radiology (Al Wildman), and our intensivist during our stay (Dr. Haddad); informing me of the news. They've been working very hard to "resolve this issue", and they've had every radiologist worth their salt at Banner Desert review Ari's current and previous (01/09) MRVs. It's no longer a hung jury on what's going on with Ari. On Ariana's current MRV, there is a missing vein. On the previous MRV, ss stated by Dr. Kuasha, that same vein "looked normal". Now, we are just waiting on Ariana's hematologist, Dr. Shah, to decide whether or not to prescribe anti-coagulation therapy (Heparin most likely). The anti-coagulation therapy is not expected to break up the clot, but should prevent the clot from growing any larger. However, there are many serious dangers to anticoagulants, which may in fact outweigh the risk of leaving the clot alone. For instance, any minor injury/bump/fall could cause Ariana to hemorrhage, which equals automatic stroke or even death (if it's in the brain). The clot, on the other hand, might continue to exist without fully impeding the blood flow (causing a stroke). It's Russian roulette either way. This time, the doctors are going to have to make the call on their own.

Big Girl & Big Boy Beds!

Gabriel & Ariana are growing up (tear*). This month, we moved them into their "big boy" and "big girl" beds from their cribs, and we added some decorative touches to their room to help spark their excitement. They had been just fine in their cribs; neither one outgrowing the length or attempting to climb out, but I just felt it was time to hit the milestone. And since they are knocking on the door of their 3 year birthdays, we went ahead.

Gabe got car sheets and a baseball jersey-style duvet. We finally put up his stars and planets that Papa Starr gave him a loooong time ago. And we put up his alphabet wall decals, which he calls his "letter factory". He still insists on sleeping with all of his crib blankets too, so I have no worries about him getting too cold at night.

Ariana got rose-patterned sheets and a paisley butterfly duvet. We got her some bright pink felt butterfly wall decals as well as mirrored butterfly decals.

Gabe has been giving us quite a bit of trouble now that he's in his big bed, by getting up several times a night (and sometimes during nap) to play in the playroom, come downstairs, and surprise us in our bed. It has been quite frustrating. I even lock him in his room, but he knows how to unlock the door (even in the dark) and walk right out again. He sometimes is caught when I hear Ariana wake up screaming, because he appeared in her room and woke her up. So far (after about a week and a half of big boy bed), nothing has gotten him to just stay put, and he's been getting to sleep at around 11 pm as a result. The closest thing that comes to keeping him in is threatening to put him in his crib (which is still in his room, assembled), but the one time I actually followed through on my threat, he climbed/fell out of the crib. Needless to say, I think we may be adjusting for a little while to come.

After about 3 nights of hysterical crying (she probably thought we forgot to put her in her crib), Ari has settled into her big girl bed really well. She loves to snuggle with me before bed (Gabe snuggles with Daddy), and she gets really happy when I point out her butterflies. Gabe tells her that the butterflies "came to visit [her]". Some times, Ari is a little too excited to be in her big bed, and we hear her banging her headboard against the wall or throwing her blinds around while she looks out her window. Both beds have extra-long bed rails so there is hardly any danger of the kids falling out to the side, but one night, after we made the bed, we forgot to push Ari's bed clear up against the wall, and there was about a 1 ft. space between the bed and the wall. We found Ari in the morning sleeping on a pillow (she took with her?) in the crack between the bed and the wall. It was so sad. She was sleeping very peacefully, and when we woke her, she was all smiles, but it just made my heart sink. We just keep that bed smooshed against the wall now.

Well, it's been fun, frustrating, exciting, scary, and most of all, new. But isn't that what growing up is all about?

Isabella's 1st Myoelectric Hand

It's finally here! Well, I really shouldn't say "finally", because at at the tender age of 16 months, Isabella has received her first myoelectric prosthesis. The myo is not a covered insurance benefit, and truth be told, our family was recently dropped from our insurance leaving Isabella and everyone else (besides Ariana) uninsured. We always knew that we would like for Isabella to have the opportunity to use a myoelectric prosthesis, if possible, but had it not been for Inner Wheel and our doctors and prostheticians at Hanger, this would have been just another pipe dream. It has been a huge blessing that the philanthropic group known as Inner Wheel has designed a fund specifically to provide myoelectric prosthetics for children with upper limb deficiencies. Out-of-pocket, the myo would have cost us $25,000. But thanks to the wonderful hearts and generous spirits of these women who don't even know us, Isabella's new hand has cost us nothing.

Isabella's prosthesis works when she flexes her wrist flexor muscles in her arm. When these muscles fire, it sends an electric signal to a sensor on the inside of her prosthesis, causing the hand to open. As long as those muscles are flexed, the hand should remain open. When she relaxes those muscles, it causes the hand to close. It's really pretty amazing.

We just picked up the myo yesterday, but I'm cautiously optimistic that she's going to figure it out rather quickly. Day one, she rarely was able to get it to open (intentionally or unintentionally), but by today, she's able to get it to open quite regularly. Of course, she still has yet to learn the correlation between her actions directly and the myo's operation, much less that she's supposed to use the hand to grab hold of an object when it's open, but she'll get there -- she's a bright little sprite.

There are a couple downsides to the myo (like with anything), such as that it is hard to train her how to use it functionally. There is no manual override to get the hand to open so that we can show her how to grab objects and utilize two hands. The hand open when she opens it, and it stays shut otherwise (shut tight), so the window of opportunity for our guidance is very small. She has to have her "aha" moment on her own. Also, when she does use the hand for play or for feeding or what-have-you, should she trigger her wrist flexors accidentally, the hand will open and she will drop whatever it was she was holding. This has happened a couple times so far. Lastly, should she decide (or just happen) to open and close her hand to where it's pinching a person, this would hurt...a lot. And then we'd either have to wait for Bella to open her hand again to release or we'd have to quickly remove the prosthesis and try to trigger the sensor with our fingers to release her vice on whomever (she ripped out a chunk of Gabe's hair today).

We are very excited for this new tool in Isabella's life. Her prosthesis is an awesome piece of equipment and (used correctly) an invaluable instrument in aiding her in her development. I feel SO fortunate and grateful that Bella is getting the opportunity to use one.

01/04/10: Isabella getting a plaster cast made of her arm so her prosthesis will fit her perfectly (plus a little growing room).

01/12/10: Isabella getting to try on a molding of her prosthesis first without (pic 1), then with (pic 2, 3) a prototype of the arm's machinery (no glove).02/03/10: Showing off her new arm and clapping her hands! She loves to hold both arms up in the air and yell "Ta-Da!!!"