Wednesday, April 28, 2010
Here be some updates on our messy faced cute babby:
- She is standing more easily, but still isn’t able to every time she tries.
- She has transitioned from standing to sitting a couple of times but usually needs help.
- She cruised three small steps today for the first time, holding onto our exercise bike.
- Horseback riding yesterday went o.k., but not quite as well as last week. She rode Max, the Shetland, and he was very bumpy. She didn’t cry, but she kept signing that she was finished.
- Motor class today went very well as long as no one touched her or tried to make her do anything. She did all the motions for all the songs and cooperated very well when it was time to put the props away. She threw rice from the “sandbox” everywhere, but she didn’t hit anyone with her fists. In the ball-room she spent the whole time crawling back and forth through a red 15 foot-long tube. For snacks she had one bite of zucchini before signing she was finished.
- She knows the difference between her right and left hand.
- Baby and daddy like to wrestle and Bridgette's patent move is the head smash which gives daddy a big ouch and causes Bridgette to laugh histerically.
- Kelly finished grading her finals after an all nighter! No more teaching until Fall.
- Kelly is organizing a new disaster drill involving 400 people.
- Jeff ate some pizza tonight.
Did we mention that Bridgette likes yogurt?
Tuesday, April 20, 2010
We were very excited last Thursday to be invited by Bridgette's physical therapist to participate in the Kids on the Move hippotherapy program. The program is used primarily for children with syndromes and autism, but they created a second class recently to try to incorporate more children with gross motor skills and language delays.
I have always wished we could join but didn't think we would ever be asked. However, Betsy (PT) has recognized that Bridgette really likes and responds well to animals. The class had a couple of openings mid season, and she asked if we'd like to fill a position.
Technically, children are not allowed in the program until they are two years old, but Bri is so tall and physically able that we snuck her in. Plus, she will be two in less than three months.
We had to get a doctor's permission slip, so I called B's pediatrician. A tech was my go-between on the phone, and after talking with Dr. Savage, came back and asked, "Will someone be helping her ride?"
The question rather shocked me into laughing.
"Oh, OK!" she said. "Sure!"
In terms of therapy, the rocking motion on a horse makes kids compensate by adjusting their own hips and trunk, a similar motion to walking. Also, they encourage the kids to command the horses themselves, hopefully increasing their ability and desire to talk. There are other advantages too, but those are the ones that apply most to Bridgette.
As Betsy was leaving our home, she mentioned that I shouldn't worry if Bridgette cried. She said that every child cries the first time.
So we decided to do our own introduction to horses over the weekend in an effort to prepare Bridgette for her first hippotherapy class this morning, Tuesday at 9 a.m.
Saturday (Day 1): Ride a zebra carousel and a rocking-horse. Rocking-tiger. Ahem. Tigger.
Day 2 (Sunday): Take a family stroll to the end of our street where two mares foaled within days of each other early this week.
Our city's motto is "A Little Bit of Country" -- you can see why.
As an aside, Jeff and I are planning to move, but the house we hoped to buy was snatched up before we could even make an offer, only a few days after it went on the market. Apparently we weren't the only ones who figured its value. For this area of Utah, the square-footage per dollar per year-built worked out to a beautiful deal. Also, it was surrounded by fields and loads of horses (plus a few cows and chickens and dogs). It was just our style. But I guess we didn't jump fast enough, so now we're back to looking.
Day 3 (Monday): Visited our across-the-street neighbor, Patty, who has spent her whole life riding, competing, and caring for horses. Currently she has two older geldings (ages 18 and 22) in her backyard and a young mare in training at a ranch.
When I explained Bridgette's situation, she was more than happy to let us into the paddock to meet and pet Louis and Norman.
Here is Patty with ... oh I just forgot his name. He's 1 year old and presented us with a beautiful snake he had hunted in the bushes.
King Louis the Nipper
Day 4 (Tuesday, this morning): The day of reckoning!
The horse farm that hosts these precious young children and their noble steeds is called Courage Reins. It is located in Highland, Utah, and it is fabulous.
We were the first to arrive.
Protocol requires that all riders wear helmets and be escorted by two walkers, one per flank, at all times. Here is how our helmet story plays out:
"Look Bridgette, a HAT!"
The novelty of this hat lasts about 8 seconds. Then she wants to remove it but it's strapped to her head. Ensue pulling on hat, pulling on strap, and general unhappiness. Follow by gentle coaxing and typical distraction measures. Go to meet the horses.
Betsy to head horse lady, "Is that helmet too big? Should we make it tighter?"
Head horse lady, "Yes."
Betsy removes Bridgette's helmet, sticks a diaper in the top, and places it back on Bri's head. Clearly she has done this before. She snaps the chin strap back together at which point Bridgette actually screams.
Me, "Ummm... I think her skin is caught in the latch."
Betsy, "I don't think so."
Me, "Yeah. I'm pretty sure."
Bridgette is thrashing her head now, so it takes Betsy a few seconds to get it unclasped. True enough, Bri has two bloody pinch marks under her chin. And now she is inconsolable. From this point on, a helmet is not an option. We try to placate her by petting the horses. Lots more thrashing. Finally she calms down because I let her take pictures with my camera.
Then Betsy tells me that I can sign a parental helmet waiver which I agree to, gladly. It takes a while to locate one. I guess it's pretty rare.
Here is a photo, a la Bridgette's perspective. I bought this shirt in Jerusalem in 2000. It's one of my favorites actually. At the top it says:
The phrase is read from right to left and sounds like "Ech ata margeesh hayom?" Since syntax is different in most languages, literally translated it means, "How you feel the day?" and is sub-printed with options. Some of them are faded and washed out. One even has a sparkler burn-hole through its face.
Please note our natural earth-tone colored outfits. They were chosen specifically to suit the occasion, and the horses couldn't stop complimenting us.
By the time Bridgette calmed down, enough kids had arrived that she had to wait for a turn. They use three horses per session, and each child rides for 15 minutes.
Bridgette crawled around on the super dirty cement for a while before we pulled out some toys. This is Betsy playing puzzle with babs. Bridgette even allowed Betsy to hold her (a first), and Betsy loved it so much, she wouldn't put her down until it was Bridgette's turn to ride.
This is a photo I took while Bridgette was waiting her turn. Three volunteers attend each horse and child. One leads the horse, two act as guards. You can see the full-sized horse in the back, a Shetland to the left, and the pony in the foreground. Initially Bri was going to ride the full-sized, but the delay landed us on Hella instead.
Because of Bridgette's sensitivities to people (except other children), they asked me to be one of the guardians today. Betsy was our photographer / videographer.
When it was B's turn, I told head horse lady (I really must learn her name, she was lovely) there would be no meet and greet. My instincts told me that would set her off. I put Bridgette directly on her pony, and seconds later we turned the first barrel. She did great! No tears at all.
The girl leading Hella said she has volunteered for 8 months now and she has never seen a child not cry the first time. The girls were really impressed by how well Bridgette did and kept commenting on her "cute chubby cheeks." Chubby? Ha. They should have seen her a year ago.
One of the barrels is piled high with small stuffed animals. At every pass, we stopped to get one. We would hold it very far to one side or very high in front of her so she had to lean way out to reach it. She grunted a lot in the effort but was always very pleased at her success.
On the far side of the arena she was asked to throw her stuffed animal through a basketball hoop. "Throw" is one the few words she says and one of her favorite actions.
Here is video demostrating "throw." You'll notice how she hesitates at first. Eventually, I realized why. You can't hear it very well, but I say something else about her being left-handed and switch the toy from her right to her left. That's all it takes.
At the end of the video, you can see her reaching for me. Although she didn't cry, after 5 or 6 passes, she started signing "all finished." I chose to take her off before her full 15 minutes had elapsed, hoping to make this first experience as positive as possible.
And to finish up, this is the very nice head horse lady helping Bridgette dismount. Although B was perfectly happy with head horse lady holding stuffed animals out of reach, once they were in close-proximity, Bridgette's people-sensitivities kicked in rapidly. So much for the cute photo of them together. Maybe someday.
After we loaded up, Munchkin was filthy and content. I know it sounds crazy, but I felt like I saw improvement after only one session. Initially she wouldn't hold the reins, but by the end, she was holding on with one hand. She also tried some new words! She would point forward and say, "Go!" which actually sounded more like, "O!" but was accurate enough that they tried to get her to say, "Walk on!" instead. She never did, but she did say, "Wah!" and that was close.
There's this small part of me that's afraid she did so well today that they'll call me tomorrow and tell me she can't be a part of the program. Or that, yes, she really does have to be two, so please wait until July to come back. But until we hear otherwise, we're so grateful to participate!
Saturday, April 17, 2010
I made a video highlighting the best moments of the last two weeks...
Our thanks to They Might Be Giants for their hit song "Number Two." The video covered Easter, neighborhood shindigs, Uncle Paul's birthday party, dinner out, the duck pond, etc. All the fun stuff.
If you're zealous, you can even expand the screen. The pictures get blurry, but they are bigger.
Bridgette was not feeling well in a few of the pics, but it's pretty hard to tell. She has, in fact, felt fairly well (we think) for almost 7 days straight... a record this year. We intend to keep her on antibiotics (Flagyl) full-time and hope that it keeps intestinal baddies at bay. She is off of the Amoxicillin though, for the time being.
So speaking of the number two, this small child finally let me put her hair in pigtails! Cute, no?
Wednesday, April 7, 2010
The wonder of stickers is how well they stick.
Also, in case you're wondering, after 1 1/2 weeks, Bridgette is finally feeling better today. It's been a long haul.
The "new normal" is a beyond blowout around midnight, followed by a load of emergency laundry, a midnight bath for Bridgette, the removal of her mattress to wash both sides and her entire crib.
But this is ok! Because... she is urinating again (as of today), eating small morsels (yesterday), and we're not having to irrigate. She is laughing for the first time in weeks, so I think her pain has subsided to "normal" levels. She is still on three prescription meds, but I didn't have to give her Tylenol.
Tuesday, April 6, 2010
Friday, April 2, 2010
I just wanted to share that.
I'm so glad we have Home Health Care in place for emergency hydration, several doctors I can call to get prescriptions upon "mom" request, and the well-earned know-how to do specific hospital treatments at home. Although the experiences that help us determine her special needs are truly unpleasant, at least we are working out a system to treat her as quickly and comfortably as possible.
We believe she is starting, slowly, to regain her health again, hopefully with no hospital visits this round.
Also, Bridgette does have an ear infection on top of all else.
We managed to sneak an appointment in at the pediatrician's at 5 p.m. today. I wasn't sure how she developed an ear infection since she didn't have a cold, but my mom mentioned it could have come from vomit in her Eustachian tube. That's our working theory. So baby'll be on both Flagyl and Amoxicillin. She should be feeling much better by Monday.
Here she is at the doctor's office watching The Little Mermaid as a last ditch effort to keep her from crawling on the office floor. Blech.
Thursday, April 1, 2010
This post is to tell you how Bridgette's health / sickness have progressed / regressed today.
First, the enteritis:
Bridgette still has a temperature. It fluctuates but hasn't ever gone away. When it's low, I leave it alone. When it jumps, I treat it with Children's Tylenol.
Her tummy has been gurgling noisily. A good sign it is "waking up."
I can't prove it, but I think Bridgette has been in a lot of pain today.
I decided to change Bri's Flagyl intake to four times a day, 1.5 mL, instead of twice a day 2 mL. I recognize that the change was presumptuous. I did it because that's how she was treated in the hospital. We switched her to 2 mL twice a day for maintenance. I didn't have a doctor's order, but the strength of the medication was not altered - both dosing schedules are at 50 mg/mL. It seemed a low-risk change with potential.
She did not poop on her own last night or during her nap, the two times she typically stools. I did a rectal irrigation at 3:30 p.m. after her nap. I pumped in 180 mL saline solution total, and I extracted at least 360 mL of stool and solution (measured) plus gas and some stool that sprayed the furniture or dripped into her diaper. This is a marked increase over yesterday. It is still neon green with small but frequent bits of darker green floating about. Jeff fed her carrots out of his soup while I taught my class at BYU last night. These also came out, in smaller pieces but still just as orange.
She ate a bit of yogurt at lunch, perhaps 1 oz. She ate a little broccoli, chicken bits, rice, carrots, and strawberry at dinner. It didn't add up to more than 1 oz of food total, but she wanted to eat. That's great.
Between 9 a.m. and 12:30 p.m., she created 1 very wet diaper.
Despite drinking about 30 oz of "milk" today, she did not produce another wet diaper. Not even moist. Diapers have been bone dry.
She has been cranky today.
She is grinding her teeth a lot, making me wonder if she has another ear infection. She hasn't had a cold, to my knowledge, so I'm not sure how it could be possible.
We put her to bed at 8:30 p.m. and between that time and 9:30 p.m. she pooped. It was runny, like the fluid we extract during irrigations, but it was substantial. This is definitely a good thing, and we hope it keeps up.
She would not go back to sleep until 11 p.m., fussing and crying. That is quite unusual. If there's one thing I'll give Bridgette, it's that she's a good sleeper.
After several phone calls to her specialist doctors, we determined to put Bridgette on a regular maintenance schedule of Flagyl full-time forever, until we determine otherwise. Whatever bacterial overgrowth occurs when we take her off occurs so fast that we can't "experiment" every week or two. The illnesses are awful for her, awful for us, and it's possible that each time the bacteria "dies" then grows back it is gaining resistence. The bacteria could also be gaining resistence keeping her on the antibiotic, but I guess that's a risk we're willing to take for now, given the alternative.
While on the phone with one of the specialist doctors I got so upset that I started to cry. He has only met her once, and although she wasn't even in the room with him for an examination, he kept saying, "I don't think you're right," about virtually everything I was telling him.
I don't know if it was one big miscommunication or what. I kept having to repeat things like, "That's not what I'm suggesting...," or, "But that's not even the issue...," or "What does it matter if it's technically called 'C-diff' or 'bacterial overgrowth' or 'enteritis,' the point is that her intestines are bloated and non-functional, she's not eating, stooling or urinating, she's really dehydrated and is losing weight..."
In the end, we both agreed I should call another doctor. I don't usually literally cry in frustration, but I guess when I'm watching my daughter in the throes of a dangerous situation, and the person who is supposed to "save" her won't even listen with both ears, it's just a different level of madness.
Second, the 6 month assessment:
Bridgette's physical therapist and case manager for Kids on the Move came by at 9 a.m. We got the results of Bridgette's latest developmental testing, and it showed that she is behind in everything except language comprehension and fine motor skills. In those two categories she tested several months ahead.
Gross motor skills is still the worst delay. She tests at about the same level as a 9 to 12-month-old.
We are adding a third therapist named Audra who is a childhood development specialist. She will work primarily on Bridgette's behavioral and emotional delays, like her extreme levels of impatience and frustration, giving up instead of problem solving, hitting herself and others when angry, and her lack of proactive communication.
Audra will also help us determine whether Bridgette lies on the autism spectrum. The current thought is that she probably does not. They think most of her delays are linked to sensory disorders and that most of her emotional / behavioral issues are linked to her delays. They think she is too social to be autistic, lots of eye-contact, interaction, etc., and that even her violent reactions are a mere matter of communicating her wants without language.
Last, here is what we did most of the day:
This is not normal. I'm not against letting her watch an occasional show, but typically her T.V. time is minimal. However, when she's feeling all day pain and irritability (oh, and also when there happens to be another snowstorm outside - winter's April Fools joke on spring, I guess), T.V. is an excellent solution. That's what I like to do when I'm sick.
So here she is engrossed in one of her favorite shows, Word World. (You can see her band-aids from multi-stick I.V. attempts and a burst vein yesterday. Also, you can see a bit of sunken-eye from dehydration too. This is much, much better than it was.)
Word World is a great PBS show where the objects (animals, actions, props, scenery, etc.) are made up of letters that spell the objects themselves. See below. Each episode is catchy, cute, and short. Uncle Jeremy & Aunt Heidi gave us some DVDs for Christmas.
It's time to build a word! Let's build it! Let's build it now!
2) If you know the right places to go, you can find free socks and snacks.
3) You can't help but feel small, yet important.
4) Water sculpture! Need I say more?
5) Any girl can make new friends at the mall. You don't have to be old enough to carry a purse.
1) Ellie and Bridgette get along nicely. They laugh and scream together. And scream together. And scream together. They had a good time, even on the car ride.
2) Aunt Heidi let us borrow her new double stroller. At the beginning of the excursion, I thought, "I could do this. Two might be ok." By the end, I wasn't so sure.
3) Here are the girls getting their first glimpse of a pond full of ducks, geese, and pelicans.
4) The stroller didn't last long. Soon the girls were begging (or screaming and crying in Bridgette's case) to get out. I got to hold onto the girls while Jeff pushed the diaper bag and camera around.
I'm sorry to say that about the time we passed the giant vulture Uncle Jeff told Ellie the birds were going to eat her. She wanted to hold my hand after that and didn't want to approach the cages without a lot of coaxing. Bad Jeff.
5) Whereas, Bridgette wanted to get down and crawl around, but there was bird poop everywhere. It was hard to convince her to be held, her solution being to try to throw herself out of my arms.
6) We took lots of bird pictures, but of course I prefer the ones of people. Except this one. These are the Laughing Kookaburra, chuckling over a fresh kill.
7) In the "Argentina" enclosure. Bridgette spied parrots on the ceiling.
8) Still in Argentina. There were birds running loose on the ground behind the fence, and they were tempting enough that Bridgette tried to walk to them.
9) More duck pond. The ducks were such a hit that I'm sure we could have taken her to the very free duck pond with as much or more success than the aviary.
10) These ducks had to be captured to get some medicine. Bridgette laughed hysterically watching the 4 workers tromp around in the pond, swinging their nets as the birds flapped and squawked to get away (which they did successfully, again and again). It was comical, but especially to an almost 2-year-old. Here she is examining one of the captured birds.
11) The peacocks were roaming freely on the other side of this hill. The girls were more than pleasantly surprised to find them after daddy / Uncle Jeff assisted them to the top.
12) Inside the "Wetlands" enclosure, about the time we decided to go home. When I re-picked her up, Bridgette started pulling her knees up to her chest and screaming, indicating tummy pain. Looking back, I think that's when she first noticed the start of bacterial overgrowth.
13) Bye-bye birdies. (Note the girls' pink noses - despite the blue sky, it was the chilly break between Spring snowstorms.) Jeff was cold too. Carrying Bridgette in one arm for over an hour kept me warm enough.
14) Ellie got a kids meal on the way home, but this little one was plum tuckered.