Blessings in Disguise

No huge updates to report on the therapy end – well, not like the last post…which was sort of a big one!  I do have updates though – along with a quick video I put together.

Physical Therapy Updates:

1)    Claire’s walking is about the same as last month.  That’s okay though – we know patience, and although we still don’t know if she’ll independently walk without assistance, we do know she’s getting stronger and more confident with her movements.

2)    Claire is starting to explore her surroundings a bit, and is getting better with her “motor planning” execution.  In other words, within the past month, she has learned how to crawl from the family room to the toy room – and that there is a purpose in doing so.  She now knows (well, remembers) that in order to get to her toys, she first needs to pass through the kitchen.  It’s a simple task that may seem easy to do.  But for Claire, she knows what she wants to do or where she wants to go, however, telling her body to do it, is extremely difficult.  Many times she gets stuck at the kitchen table or chairs, and does not know how to get around them.  The fact that she’s trying, though, is huge.

3)    For the 1st time in a year, she is starting to remember how to cruise along furniture.  Some days she can go from the couch to the loveseat (using the end table to bridge the gap) and other days, she can only from one end of the couch to another.  A few months ago (and for the past year, really) she was unable to do any of this, so again, there is progress.

Occupational Therapy Updates:

Claire is starting to lift her left hand a little bit more.   She is also becoming more purposeful with her swiping or swatting with regards to her right hand.  She especially reminds me to “hurry up” when I’m feeding her… if especially hungry, she’ll leap forward in her highchair and successfully knock the bowl over in an attempt to “do it herself.”  She’s demanding independence!   On a side note, she reminds us that she’s a typical 2 year old when she refuses to open her mouth when you feed her because she doesn’t like what you are giving her.  She’ll close her lips tightly, and turn her face the other way.  When you say “Claire…” she will look at you, sparkles in her eyes, and those lips turn into quite the smirk.

My dream for her, in terms of occupational therapy, is for her to color or paint by herself, feed herself, or pick up an object she wants.  We are exploring adaptive equipment right now, along with additional bracing for her hands.  Crossing fingers, although I do know this category in particular is extremely difficult for our Rett girls.  It’s a long shot – any of the above dreams, so I’ve been told.  However, they are still dreams, and I’m not ready to dismiss these just yet.

Speech Therapy Updates:

We’ve been focusing a lot this past month on literacy.  Ms. Glenna needed to test Claire for some paperwork to track her progress, and we discovered Claire knows her ABCs.   We are currently working on numbers, and I picked up some “easy to read” books because if Claire learns to read, this can really unlock her world in many ways.

Aquatic Therapy:

Unfortunately, Claire’s therapist has been out on medical leave so she hasn’t been in the water much.  I hope to get her back in asap.  I called a different location and we’re hoping to get her started within the next couple of weeks.

Music Therapy:

Claire, her brother, and “Grammy” (one of Claire’s grandmothers) went to a music class – for all kids ages 0-5.  It is through a place that offers individual music therapy.  The class was a huge hit and we’ll get her enrolled somewhere – right now, I’m thinking that she would enjoy more of the class type setting vs. individual, because she’s showing a big interest in being around other children.

In closing –

This is a more thorough update than normal – hopefully not too long.   I’ll close with the following thought:

I remember at one of our 1st Rett support meetings, another mom told me that with Rett, everyday is “consistently inconsistent.”  I understand what this means now.  Some days, Claire does great and is on top of her game in therapy, or just in ‘general’.  Other days, apraxia sets in, and it’s almost like a “reset” button, where she is starting from scratch and really struggles to do even the simplest of tasks… even the tasks she’s done over and over previously.   I especially struggle with these days because Claire is frustrated and tells us with her communication book that she “wants to do what the others are doing,” that “she’s mad, or sad” or “frustrated.”   Or some times, she cries a lot, and I don’t know what’s wrong or how to help her… and she doesn’t know how to tell me… so this takes its toll.  Those moments are the ones that are the most difficult.  With any parent, when you child struggles, you want to help them, disability or not.  So those are the times where you chalk it up to ‘one of those days’ and know that tomorrow is a new day.

One small goal I had for myself, was to learn how to put together a slideshow.  I know, I know.  I may be a bit behind technological times.  But, it’s been on my list as a personal goal for a while, and somehow last night, I just did it.  Hope you enjoy!

I call it:  Blessings in Disguise.

As Claire continues to work hard in her daily therapy sessions, her brothers, who are many times behind the scenes by default, shine through in so many ways.  These boys are amazing, and we are so proud of them.  They have learned about a unique type of love that’s extraordinary and hard to put into words.  We all have.  And this is a small example of what people refer to as a “blessing in disguise.”  These boys are something else.  All three kids are.  And for this, Sean and I are blessed.

10 thoughts on “Blessings in Disguise

  1. Beautiful…beautiful family….beautifully done. Your love shows through…your faith shines through…hope is never ending. Our love and prayers continue…

  2. Hey Col! Thanks so much for sending out these updates. I love this website you made and I especially love the slide show. Nolan, Brendan and Claire have the best parents ever! Great job!!! Keep on sending!

  3. You did an amazing job, my beautiful friend! I know it’s not easy, but the way you are able to be so strong for your family is inspiring. I love all of you very much.

  4. Colleen, I continue to marvel at your strength. You and Sean, and the boys, are showing many of us ‘the way’. And, needless to say, Claire is the source of strength for us all! God bless, and tell the family I said ‘hello’. Miss you all.

  5. Colleen; congrats on making your first video, you did a great job!
    Congratulations to you too Claire, on having the most loving family a little girl could ever ask for! God loves you and has blessed you all!

  6. Colleen and Sean, such a thrill to get to see Claire’s progress. I have gotten involved with the diagnosis of another little girl up here. I would love to talk to you in person. Please give me a call. The office has my number. Diana

  7. Wow Colleen that was amazing.. I haven’t been on the site lately~ I actually heard a commercial for it on the radio today and had to come check it out. The video was amazing. You have a beautiful family and you and Sean are truly unbelievable. You all are. I am amazed and inspired by what Claire continues to do. You are all in my thoughts and prayers.
    Becky

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