Madeline Speaks!

Madeline has been making progress in the speech department! And frankly, if you think this one is good, just wait until you see the one coming up later this week! (This was posted on Facebook last week, so to those of you who don't "do" Facebook...you're welcome!)

Untitled from Pam Asbury on Vimeo.

Riding the bus

One of the hardest decisions I had to make regarding Madeline's schooling had to do with transportation. Bona Vista is about 10 minutes away, if that. I was encouraged by other friends (and really good mamas) to try it. Their experience was that their special needs kids really seemed to like it.

I'm very glad for the peace I felt after praying (and worrying, of course, since I am human after all) about this, and a few weeks down the road, I'm so grateful we decided to try it. Madeline did not do well at all the first few times, and I think it was the noise of the bus, since the poor little girl hates loud, unfamiliar noises (and some familiar ones too). It could have been separation, but since she wheeled right into her first day of preschool and hardly glanced my way when I left, I'm not so sure that was it. She was sobbing when I got her off the bus, but after another day or two, the tears subsided and now she smiles when she sees the bus, rides the lift, and sees the few little tykes on the bus.

Her bus driver has made the experience easier as well. He's a pastor who has a very kind heart. He checks on the kids in between stops and often tells me what Madeline is doing before I get back to her car seat. Madeline has a very short bus ride, but I often find her sound asleep and she smiles broadly at me when I wake her up.

The other benefit to sending Madeline on the bus is that it is so much less a disruption to our school day. It takes about an hour to get her bathed, diapered, dressed, fed, in her wheelchair, bookbag packed, and on the bus. I would take another whole hour or more out of our day to load her with her sisters into the van, drive to school, get everybody out and into school, check in with the teachers and other beautiful children and/or mamas, load back up and come back home, and then do it all again in such a short time.

Ok, all that rambling and finally the pics! (Remember, this is before she got her new chair!)

All about Dex

Two weeks ago tomorrow, I received a text from Dex inviting us to his annual cookout at his clinic (Step 'N Stone Physical Therapy Solutions). OF COURSE! Filipino food? Yes, please. Seeing Dex after too long? Never mind the fact that Madeline had to be in school very shortly after the party started, we were going!

Dex was Madeline's physical therapist from the time she was just a few months old until he stopped doing First Steps to focus on his booming clinic, about a year an a half ago(??). Madeline adored him (the rest of us did too; did I mention he brought us an entire Filipino meal once?), and we were all very sorry to see him go.

Funny story: On his last visit, Dex told Olivia and Carli the reason he could no longer come to see Madeline is because "your mommy fired me." Doesn't matter how much Dex and I have told them otherwise, they never remember the real reason. As we walked across the lawn to the picnic, Olivia said, "Mommy, why did you fire Dex?"

So all that to say, here are the pics of Dex and Madeline. I just had to put all three up here to show you Madeline's antics.

Big-Girl Bed

(I have no idea why this picture turned out pink, but take a look at that smile, would you?)

We finally have a bed set up for Madeline in the girls' room! Carli and Olivia were both in their own rooms at four months, but with Madeline, it's obviously been a bit different. For one thing, SPACE! Our third bedroom is our school/play room without a lot of extra room for a crib/pack-n-play or a bed. The girls' room is already wall-to-wall furniture. And too, even when we did try out the pack-n-play in another room, she always ended up back on a pallet on our floor when she was sick...and she just sort-of stayed! :)
The first night was not the proverbial walk in the park. She was so excited (?) and kept sitting up and laughing and being all-around silly. Then she cried when we left and turned the lights out (even though she always slept with them off before). Carli and Olivia were very frustrated with her laughing/crying because they wanted to go to sleep. I finally laid her on my bed and she was out like a light....so we moved her back to her bed when we were ready to hit the hay ourselves. In the middle of the night, the girls woke us up because Madeline was crying again, so it was back to the pallet.

The next night was ever so much better. I put Madeline to bed earlier than the other girls, sang to her, kissed her, talked sweet nothings to her, and then I laid her down, turned on KLOVE (Christian radio station), turned out the light and walked out. She protested for a few minutes and I ignored her (*sniff*), but she quieted down quickly and for the next 20 minutes or so, every time I'd peek through the door, there she was, sitting up and staring back at me. I didn't say anything to her, just smiled and went about with whatever I was doing. Sure enough, it wasn't long before she was sound asleep...and she slept for 15 hours. (She had a little cold, and was probably worn out from the night before!)

Ready for bedtime prayers with Mommy and Daddy

Birthday celebrations

A week ago Sunday we celebrated Madeline Kate's third (!) birthday with cake and a few presents. First, though, I wanted desperately to get a picture of Madeline in her new dress from Granny, and wouldn't you know it, Gramma took Maddy's little jacket off before I can snap it. So imagine a cut little pink and black jacket. It was sweet! As you can see Madeline is signing cup...Sunday dinner wasn't quite ready, but she definitely was.
This year Madeline was very into opening her presents. Carli was the only one she'd let help her, but even then she was a bit territorial!

She sees her magnetic doll set and lunges with a smile!

Couldn't resist, but she's away and won't see this for a while, probably! :)

This picture of Glen and Madeline will tell you just about everything you need to know about how Daddy feels about his girls.

She must have liked the cake...she has her hands ready to "thank Jesus for the food!"

Love this sweet dress I found on major clearance at TJ Maxx. I figured out at Easter that I could save myself a lot of money if I would buy flower stems 50% off at a Hobby Lobby sale, add ribbon to an alligator clip and hot glue it to the back of the destemmed flower! So this one cost me $1.50 rather than $6! :)

Of Sign Language, Sippy Cups, and Sufi (OK! So my alliterative skills aren't as good as my Daddy's!)

Madeline Kate is making great progress with her communication skills, thanks in no small part to her incredible speech therapist, Ann, as well as her other therapists and sisters who speak non-stop to her. In the past week, she's been putting two words together using sign language--"Please cup" and "More please." She's also starting to answer "yes" or "no" appropriately. I love that she can get across her desires a little more.

In the feeding-tube arena: We're almost done with it! Madeline finally has 5 or 6 teeth and she can handle almost any table food from soft to semi-firm. She gets most of her fluids through the sippy cup with Thick-It mixed in to thicken it to a consistency she won't aspirate on. We use the tube only for her medicines and water now, and occasionally to get an extra feeding done if we don't want to wake her.

Tomorrow Madeline will visit Dr. Sufi in Indianapolis. Dr. Sufi is her new pulmonologist, and I'm really anxious to see if we can find some answers for her continued need of oxygen. If it's due to the DiGeorge Syndrome? If so, will she outgrow her O2 requirements? Will the kyphosis (sever spine curvature) correction in the spring help her breathing at all? So many questions, and only One Great Physician who has all the answers. We beg for your prayers, that the doctors will have wisdom in dealing with her situation, but more importantly, that His will will be done in her life for the primary purpose of bringing glory to Him.

Standing

Our little Madeline Kate got her first taste of standing last week. After many tears while being pulled in and out of the stander, and many adjustments by the orthotist, we finally swung Madeline into an upright position. The tears fled away and a brilliant smile instantly covered her face.

Repeat when I brought her home and she showed Daddy and sisters her new trick! They were all squealing with delight, which made Madeline clap hysterically and pump her fists in the air, all while beaming radiantly (Is that redundant?)

Right now she is tolerating 20 to 30 minutes in her stander, made especially for her by Abe at Advanced OrthoPro, INC in Indianapolis. The back is molded to the exact shape of her very curved little back to prevent any undue pressure. While in her stander, she plays at the couch, the piano bench, or the (too-HUGE) doll house (which someone gave us for free, and which Kirsten is going to remodel!). She also enjoys standing in front of the door.

To answer some quick medical questions: I've been asked several times what the point of this stander is. First, Madeline cannot weight-bear even slightly. Because of this she has no regular joint or bone compression from her hips on down. Bone compression is crucial for growth. This stander gives her added doses of compression, all while she's having fun being up on a normal 2-year-old level, which, of course, is the second reason to use a stander.

We also visited Madeline's orthopedic surgeon, Dr. William Didelot. The great news is that Maddy's bones are FINALLY getting big enough for surgery to correct the severe kyphosis in her lower thoracic spine. (You can see a little bit of how bad her curve is here. Picture a golf ball or a little bigger coming off the back of her back. It's hard to really tell how bad it is without seeing her in an upright position. The x-rays are bizarre.)

So she's being scheduled for surgery in March, when Dr. Didelot will remove a couple vertebrae and put rods in her back, hopefully ones that will grow with her to reduce the amount of surgeries required. He can't get her on the schedule before November and he doesn't do this type of surgery during the holidays or cold/flu season because of the high risk of infection. Any infection around the rods would most likely require removal of all hardware and another surgery to redo later on.

The hope is that a straight back will free Madeline's lungs up to breathe better and possibly get her off her oxygen. We have seven months to pray that miracle in, okay? :)

Thank you to all of you who prayerfully follow Madeline's journey. I cannot begin to tell you how blessed we feel that she is in our home, brightening our days with her constant kiss-blowing, smiles, and shear determination. Knowing that we have such wonderful family, church family, and friends who continue to rejoice with us and pray for us is buoying.

Happy 2nd Birthday, Madeline Kate!

Though she was not like the other girls...

...they thought she was the best.

And through all the years of struggle...

...Neither whispered one regret.

They remembered the words that God had spoken...

And they both broke down and cried.

See to them it just did not matter

Why some things in life take place.

They just knew the joy they felt

When they looked into her face.

They learned sometimes miracles hide.

They said, "God has wrapped our blessing in disguise."

--Bruce Carroll

Updates on Madeline

Madeline...

...acts more like a "big girl" everyday (notice the eye-roll).

(Pictured here in a museum in Mobridge, SD)

Please excuse the horrible spacing issues on this post. I've "fixed it" several times and it keeps going back to run-on paragraphs.

It's been way too long since I've provided an update on Madeline. I'm not even doing that great at putting updates on Facebook. But I'm not putting that kind of pressure on myself. (Ha)

Madeline Kate is turns two this week (Wednesday). Since her ear-tube/Nissen/g-tube/vesicostomy/clubbed-feet-correction surgery last September, she has really taken off in a lot of ways. She continues to receive four, hour-long therapy sessions per week: occupational, physical, developmental and speech. A dietician visits once a month.

Ida works with Madeline in occupational therapy. She works a lot on oral motor skills, i.e. stretches around the mouth, introducing lots of textures, feeding skills, etc. Madeline loves anything salty and will allow about anything near her mouth as long as it's food, so she has become a lot less defensive when Ida works with her. Ida also oversees seating options for Madeline and is working on fine motor skills with lots of tactile fun.

We were very sad to say good-bye to Dex for physical therapy, but he has moved on to focus solely on his own clinic. (He told my girls that I fired him, and the girls still think that happen, even though I would never have wanted him to go, and I've told them that many times.) Amanda has joined our team and is working Madeline hard (and that's good!). She has Madeline use 1/2 - 1 lb weights on her arms and Maddy is finally accepting that well. She does sit ups, balancing on therapy balls, four-point balancing (hands and knees) and on and on. Maddy has made a lot of progress physically. She can roll all over the living room, and is now pulling herself along on her belly using solely upper-body strength. She is such a determined little girl and you can see the immense pride that she has in herself when she accomplishes something new.

Madeline has made such great strides since Ann has come on board with speech therapy. She is vocalizing a lot now (though only "da da" for words) and is signing a ton. Ann uses books, flashcards, finger plays and songs and lots of awesome toys and Maddy really enjoys that session. Maddy can sign mama, daddy, Lisa, monkey, cookie, dog, car, truck, train, fish, all-done, more, milk, eat, play, elephant, book, baby, and lots of other things I can't think off right now.

Erynn continues with Madeline in developmental therapy. She is a big help to me since her little boy (9?) has spina bifida as well. She's my own support group! She works a lot with Maddy on stretches, sit ups, rolling, playing, and lots of other things.

Madeline is up to 19.2 lbs, at long last, and Dr. Escobar (neurodevolopmentalist) is thrilled with her progress in this area. She is down to two g-tube feeds per day, for her PediaSure which she still aspirates on a lot. She eats chunky purees, either State 3 baby food or purees from our meals, yogurt, cottage cheese and on and on. We're planning to use ThickIt soon so that we can try to get off the tube completely. She still has no teeth, though we can feel bumps all over her mouth. Dr. Escobar said this is due to the DiGeorge Syndrome which caused hypocalcemia. We resolved this quickly after birth--by 3-6 months, she was no longer needing calcium supplements. But that was 9 months plus 3-6 months in which she was hypocalcemic, which put her behind in the tooth department.

Dr. Escobar is not completely thrilled that Madeline isn't speaking more than she is, but suggested that within six months or so if she isn't talking yet, he will order more hearing tests and look into other devices for communication, possible an iPad. Who knew? :)

Dr. Escobar also has referred us to Dr. Wilner, a physiatrist or rehabilitation doctor. She will be the one who will oversee any equipment that Madeline will need, such as a stander.

From a pulmonary standpoint, we haven't had much change. Her last sleep study in late winter showed continued apnea without oxygen, but since she's on oxygen continually, she does great at home. We continue with 1/2 liter of flow, and we're working at getting better with daily breathing treatments. I've said this on FB, but if I could change anything for Maddy, it would probably be that she wouldn't have to use oxygen at all, even over healing her paralysis, etc. Would you join with me in praying for this miracle?

So what a long update, eh? She's our little angel and we are very pleased with her overall progress.

And so I must wrap this up. Here's a quick look at how much Maddy's hair has finally grown! Yeah, Mommy experiments a little too much, probably.

The many faces of Madeline Kate

"Look what I did!"

"So big!"

The eye roll: "You want me to do what???"


Just like my daddy--always a book in my hand!


"Have you read this book?"

Progress report for Speech Therapy

Thought you would enjoy hearing Madeline's progress report for her 18-month review. This was written over a month ago, so even since then we've seen progress!

"Madeline continued to demonstrate tremendous progress with her communication skills over the past couple of months. She was observed to imitate some basic signs seen in play (i.e. more, ball, bunny, monkey, cow, elephant, apple, dog, fish, car, baby, etc), and she was observed to use gestures/signs independently in response to verbalizations (i.e. Give me a five, Give baby a kiss; So big, dog, fish, Good girl, Mommy, Hi, Daddy, etc.). Madeline held her hands up high while therapist sang "Twinkle, Twinkle, Little Star," and she was observed to participate in movements/gestures of some other familiar songs/finger plays (i.e. "One little fishy swimming in the water" and "Pat-a-cake") Madeline has been observed to spontaneously sign ball and monkey. She tolerated hand-over-hand assistance to sign labels to familiar objects, and she was noted to intently watch the speaker's mouth during communication exchanges. Madeline also attended to picture books as therapist labeled pictures and talked about actions in pictures."

Today's speech therapy report says that she imitated these signs while looking at a book: train, horse, thank you, car. She also "was observed to blow raspberries to obtain therapist's attention in play." She signed "star" in response to verbalization of the word. "She also appeared to say 'thank you.'"

Fingerprints of God

Glen pulled out a Steven Curtis Chapman CD that we haven't listened to in a while. Truth be told, I don't think I remember this song at all, but it's already wound its way around my heart. I'm going to save this one for Madeline Kate as she gets older.

Fingerprints of God

I can see the tears filling your eyes

And I know where they're coming from

They're coming from a heart that's broken in two

By what you don't see

The person in the mirror

Doesn't look like a magazine

Oh but when I look at you

It's clear to me

That I can see the fingerprints of God

When I look at you

I can see the fingerprints of God

And I know it's true

You're a masterpiece that all creation

Quietly applauds

And you're covered with

The fingerprints of God

Never has there been and never again

Will there be another you

Fashioned by God's hand and perfectly planned

To be just who you are

And what He's been creating

Since the first beat of your heart

Is a living, breathing

Priceless work of art

And I can see the fingerprints of God

When I look at you

I can see the fingerprints of God

And I know it's true

You're a masterpiece that all creation

Quietly applauds

And you're covered with

The fingerprints of God

Just look at you

You're a wonder in the making

And God's not through

In fact, He's just getting started!

Therapy and Science

Maddy with Developemental Therapist Erynn Mula

Maddy's famous eyeroll when she's laughing
Not sure what's going on with the tongue

Science fun with our little homeschool group.

We meet once or twice a month with some other friends who homeschool. Carli met Liam and Wyatt in her pre-school class at First Presbyterian. A few more are involved that Carli has really taken to as well.

Here, we were seeing how close Carli was in her estimation of the pumpkin's circumference.


Digging the seeds out so we could count them.

Ew.