Wednesday, May 4, 2011

What's New Wednesday!

Hey Ya'll! I know, I know what about last week. Well, we had a pretty worthless appointment at Riley and by the time we got home mid afternoon I didn't have too much energy to put into remember and composing a thoughtful post sooooo I just waited till this week.

This week oh this week, what horrible memories from a year ago this week hold. This Post brings it all back and to top it off he is having the next big MRI next Thursday the 12th (a year to the day that his tumor resection finished). Its a bittersweet week. On one hand, and I have very thankful for this, he is still here with us, thriving and progressing in the right direction. On the other hand, a year ago  we were completely different people than we are today, a year ago our lives started to spiral out of control, and a year ago I started the mourning process for the what if's in our lives.

I try my hardest to stay positive, I really do and for the most part I think that is accomplished on an everyday basis but there are times during the day that its REALLY tough. I wont lie and I think any parent or person struggling with some of the stuff we are faced with would say the same thing. I don't know, I guess you can never truly understand until you walk in our shoes and I would not wish that on my worst enemy.

So enough with that, lets get on to some updates of the cutest little boy around:

So we had family pictures taken by the wonderful Jessi of Bee Elle photography on Saturday. I couldn't be more pleased with the first edited picture I have seen. Is it not the cutest? I even entered it over at Parents.com for a contest to be the cover child :) I know lame right? But I think the pictures is just so precious and captures a really fun moment, I can wait to see how the rest turned out, I will give you a hint, some of them involve mustaches-just say'n!

Therapy:
  • PT is going well. Mrs. P commented on Monday how he was doing so much better with stamina. He didn't have to lay his head down but once during our session on Monday! Usually he wears out quickly from the weight on his head on his little body.
  • He is standing for long periods of time; while we are trying to get him to take steps, he doesn't quite understand the lifting of his leg and placing it in front of him to move it. Eventually he will get it but right now it just doesn't click.
  • Mrs. K is working on some oral motor stuff in OT along with strengthening his hand muscles. She puts food on the outside of Kee's mouth in hopes that he will bring his tongue out of his mouth and get the piece of good on his lip. To work on the hand strengthening we are using pom pom and a coffee canister with a hole cut in the lid, he enjoys poking the pom pom through.
  • Nothing really new in the speech therapy department, haven't seen her in a couple of weeks but she is coming on Friday so I should have something to update next week.
  • Hopefully, fingers crossed, if we are taken off isolation next week we can start going to the rehab center for therapy and using their equipment like the pools and gym to work on some of Kee's deficit's.
New Things:
  • So when Keegan crawls is more of an army type crawl but that even doesn't describe it very well. He is basically just pulling himself around with his arms, he doesn't even move his legs until recently. In the last week or so he has started using his right leg to push off of. This is really exciting for us because he is one step closer to actually crawling.
  • He got bubbles in his Easter basket and I found out all too quickly that he HATES them, for now at least. I am going to reintroduce them this weekend but as of last Sunday he hated them.
Health:
  • Our MRI is next Thursday, please please please join with us in prayer that the MRI is stable and there is no new disease. My hopes and prayers are that is actually looks better!
  • We will also have blood work done next week to see if we can rejoin society and be off isolation. I am praying that this is the case. You can only walk around the park so many times and pretend that you our and about.
  • I also hope they decide to take the Mickie button out. He doesn't get anything through it anymore and it just gets in the way when he is trying to crawl, remove it I say!
  • He is trying to cut his eye teeth and they are causing him some major issues, poor guy! I pray they come in quick and cause no other problems!
Family:
  • Well I debated on sharing this with my blog but I could use all the prayers we can get. We are currently trying to give Keegan a sibling. I have always wanted more than one and after talking with his different therapists they think a sibling will be good for Keegans development so we are on Month 2 of trying. Hopefully I will have something to update on this front soon!
  • My sister,Keegan's Aunt Abby is moving out of our house in the coming weeks. Her and Mom moved in after the diagnosis to help with bills, household chores and the like. It has come time for her to venture out on her own again. Although we know this is the best of her, it will be nice for Keegan to have his own room again but we will miss her VERY much!
  • I bought a barely used jogging stroller on craigslist and I am going to pick it up today, I am excited to get out and run on pavement. Its been a long time since I have done so and hope to enjoy nice long runs with Keegan.
  • I am debating on entering my first 5k for June. There is colon cancer awareness run and I would love to be apart of it, I just need to get used to running on the pavement.
Happy Mother's Day to all the Mom's out there!

4 comments:

  1. Keep your head up and stay strong girl! Can't wait to see the rest of kee's pics! :)

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  2. What a progressive update! Great news all around.
    Praying for really good results with the up coming tests for Keegan and praying for a sibling for him too! Wonderful, awesome news Beth!!

    Way to go, back and running!! I am a runner and just love feeling the gravel road under my feet and the burn in the legs. 5k in June sounds like a great goal.

    Praying and Happy Mother's Day to you mom!

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  3. wow a lot to report but all sounds good - my prayers will continue for you all! and yes that is the cutest little guy! there is something about his eyes and his smile! and he looks like he should be on the cover of GQ with his dapper do :)

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  4. What a handsome guy he is! He is in our prayers as you scan and thank you for sharing all the updates on his progress. You are a brave and devoted mom, and I know the challenges are sometimes quite large. You're amazing! Congratulations on trying to grow your family - that is so exciting and wonderful! You've probably already received genetic testing and understand that the mutations in the GPC3 gene that Keegan inherited to cause his challenges could very likely be passed to your new baby as well.

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