Wednesday, April 17, 2013

Hope turns 2! And pictures for the Grandmas!

 Hope turned 2 on Sunday. Between church and nap and small group, we actually had a really full day, and ended up squeezing in present opening in the 1/2 hour before small group. She loves books, although she likes the idea more than the actual reading. She's good at flipping pages.
 She also got some trains, and some animals to add to our animal collection. Carver enjoys putting the train track together for her, but her favorite part is pushing the choo-choos on the floor.
 We took cake and candles to small group, and let everybody sing to her. She was completely baffled by the candles.
 Fortunately, she has older sisters who are happy to finish the job!

She continues to plug away at milestones, making steady progress, though a couple months behind her peers. She has started talking a little bit, and has about 10 words that she can say umprompted, and a huge list of words that she will try to say if you ask her to. She is even putting two words together sometimes, like, "Mama, nana," asking for a banana. She is also doing a few key signs more dependably, and can communicate when she needs a drink or more of something. We are greatly encouraged by her progress in this area.

She is a proficient crawler now, and does a lot of knee-walking, so much so that her little knees are always red. Her real walking is still assisted and very unsteady, and it seems to us that her ability to balance is one of the biggest factors here. She tips and falls easily, even just standing and holding on to somebody, if she turns her head too quickly, she will likely fall over. She does have little braces on her ankles now, just to keep all her loose ankle muscles and tendons in line as she strengthens all those muscles for walking. While I do think they have helped, they have not made the huge difference that maybe we were hoping for. David and I are hopeful that she will walk by herself someday, but recognize that it will be a long haul to get there. I was able to obtain a temporary handicapped parking permit, which will make parking our big Suburban in New Jersey suburbia a little easier :)

Hope continues to get all sorts of therapy every week through NJ's early intervention program. That will be ending here in a few weeks, since we will be off to spend the summer in Montana, and will have to discontinue the therapy for that time. While she would still be eligible when we return until her 3rd birthday, I'm not sure we will continue with it. It is a lot of hours in the week for me, and I'm not 100% convinced that it has made a huge difference for her. She seems to do things when she's good and ready to, and not a minute before, no matter how much pushing and prodding the therapists do. She no longer needs to be followed by our neurosurgeon, and is pretty much out of the danger window for hydrocephalus. We know the signs like the back of our hand, though, and can always take action if we see any of those. She continues to be followed by a neurologist (although we don't go as often as they want us to :), a physiatrist (a new word for me, but he is by far our most helpful doctor), and an ophthalmologist.

As we prepare for the birth of her baby brother this summer, we are realizing that there are changes ahead for her, some already happening now (I can't pick her up as easily as I could a few months ago!). We pray that being pushed into big-sisterhood will help her continue to develop and not remain the helpless baby of the family

David and I are completely dumbfounded by her progress. God has been so faithful to us, when we in no way deserved it. As I have ached in the past two years with friends and acquaintances who have lost babies or have children with more severe handicaps, I do sometimes wonder why God spared us one of those tragedies. But, in His providence, He did, and our job continues to be to care for, protect, nurture, and train Hope so that she will bring Him glory.


MagistraCarminum said...

Rejoicing in Hope's progress, and in her little brother to come. Praying for you all, and so glad for this update!
In Him,
Chris Finnegan

Kamilla said...


This is so encouraging! Thank you for sharing.