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.