Update (long) — The Bump
February 2012 Moms

Update (long)

I have been having trouble getting my hands on the laptop (and bumping from my phone is hard!), so I'm sorry I wasn't able to post my thank you sooner.

Yesterday we drove 2.5 hours down to Riley's Children's Hospital to have Grant seen by a developmental pediatrician.  We were called back right when his appointment was scheduled and the doctor spent over an hour with us.  He asked me a slew of questions about my pregnancy, his birth, and medical conditions.  He wanted to know when I felt like something was wrong and what I saw as red flags.  I had a list for him with things that were currently happening that concern me and our OT.  He asked me family history questions including in depth questions about my brother, his development, and his mental capabilities (my brother is pretty normal, but I wouldn't say he is super smart or anything).  The doctor had his "bag of tricks" and pull each thing out and observed Grant.  He looked at his eye tracking, hearing, physical capabilities, etc. 

He asked me how old I thought Grants abilities are at, this is question I had already thought about, so I immediately answered around 4 months.  The doctor basically said that was about right, but a little optimistic.  He said that Grant is Globally Developmentally Delayed (GDD) and has severe Hyptonia (low muscle tone) and is at risk for Dysphagia (swallowing problems).  He said that 3 things could be the cause 1. Genetics 2. Neurological 3. Metabolism/Mitochondrial.  He ordered a genetic screening, an MRI, and a video feeding study.

So, here's where things get crazy.  They took 8 vials of his blood while we were there.  He was surprisingly a champ and only cried for 30 seconds when they pricked him and sat there wonderfully while each vial filled with blood.   We have the MRI scheduled Wednesday and his video feeding study scheduled for Thursday.  So, I will have to stay in Indy overnight with my dad.

Now, my turn.  I had my doctor's appointment this morning and I had my cast off for a brief minute and I got to wash my leg.  I was hoping I could get a boot and keep the cast off, but alas - I wasn't so lucky.  My leg looks ridiculous skinny! One thing that people don't tell you when you have a cast is that it makes your dead skin stay stuck to your foot and it just builds up layer after layer.  It looks and feels weird.  It peels in chunks so thick that you are sure it will hurt, but it doesn't.  It's gross. 

The doctor said that I could get the large screw out right away and do 15lb weight bearing once it's removed.  He said that I need PT 2-3 times a week because I cannot move my toes, but just a little bit.  I wasn't prepared to get the screw out until the end of January, but he said I am having surgery FRIDAY! During surgery he is going to really manipulate my large toe that I can't move at all.  He said that would break up the scar tissue and increase my mobility. I'm pretty terrified because everything is happening so fast and I wasn't prepared.  Not to mention my last outpatient surgery landed me in the hospital for 2 days while they tried to control my pain.  This surgery isn't suppose to be a big deal, but they are still putting me under.  I am terrified.  I was going to try and go back to work next week, but with the surgery - I'm scared to commit.  I don't think my boss is going to be understanding much longer.

Here is a pic from our photo shoot on Saturday:

image

 

Here are links if you want to see my foot, my skinny leg, and Christmas cast (in that order)

http://i26.photobucket.com/albums/c112/jjewels119/20121205_100855.jpg

http://i26.photobucket.com/albums/c112/jjewels119/20121205_101240.jpg

http://i26.photobucket.com/albums/c112/jjewels119/20121205_142752.jpg

 



BabyFruit Ticker
Baby Birthday Ticker Ticker

Re: Update (long)

  • You guys are such a cute family :) and I love your cast!
    image
  • I'm happy you have a doctor who is being very proactive - both for you and Grant!

    Sucks about the cast but it is pretty cool! 

    And OMG!  Grant is so cute!  What a great family picture...Thanks for sharing!

    Lilypie - (JrNi)

    Lilypie - (y35Q)

  • Loading the player...
  • imagemichellekay06:
    Love the picture!! I hope things keep getting better!! Sounds like you are coping well, better than I would!

    I really am not coping well.  I see a counselor tomorrow.  I am trying to do the best I can, but I realize that I do need some help.



    BabyFruit Ticker
    Baby Birthday Ticker Ticker
  • First off your family picture is way cute!!
    Secondly wow that's a lot to take in. It's so great that you are on top of things and Grant will get everything he needs and how optimistic the dr is about everything. That's great that your foot is healing and you will be able to start waiting sooner than expected! You and your family are always in my prayers, wishing you guys a Merry Christmas and a wonderful new year!!
    [center]Feb 12' December Siggy Challenge: Favorite Christmas Movie - Meet me in St Louis[/center]
    [center][URL=http://gifsoup.com/view/1552976/the-trolley-song-judy-gif.html][IMG]http://gifsoup.com/imager.php?id=1552976&t=o[/IMG][/URL] [URL=http://gifsoup.com/]GIFSoup[/URL][/center]

    [center][IMG]http://i1062.photobucket.com/albums/t497/mlj_est2008/bb1_zpsdc3be67b.jpg[/IMG][/center]

    [center]"I prayed for this child and the Lord has granted me what I asked of him." I Samuel 1:27[/center]

    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Parenting Advice"><img src="http://global.thebump.com/tickers/tt1329ee.aspx" alt=" Baby Birthday Ticker Ticker" border="0" /></a>

    [center]The Mr & I= Met in Oct 2005[/center]
    [center]Engaged Oct 2007[/center]
    [center]Married Aug 2008[/center]
    [center]BFP May 26, 2011 EDD Feb 2, 2012[/center]
    [center]DS born Jan 14, 2012 "I saw God today"[/center]
    [center]A Mothers Love for her child is like nothing else in the world. It knows no law no pity. It dares all things and crushes down remorselessly all that stands in its path.[/center]
  • First, ((hugs))!!

    I'm so glad that you're able to take Grant somewhere like Riley. They're just absolutely the best. Many of my family and friends have been helped in different ways by Riley. I have a few friends who work there. It's a wonderful hospital.

    Way to go Grant with those blood draws. I wouldn't have been able to be that good! How will the doctors proceed after they know what's causing his delays? Or have you even discussed that?

    YAY for getting a screw out of your foot!!! Boo for having to have another cast, but it's awfully cute if you have to have it! I'd just play the work thing by ear. I hope your boss doesn't give you much grief. He might have a few 212 ladies come straighten him out!

    Your picture is adorable! You have such a cute family!

     

    Image and video hosting by TinyPic Image and video hosting by TinyPic Image and video hosting by TinyPic Baby Birthday Ticker Ticker
    212 Facebook Admin.
  • Great family photo! Good luck with your surgery and all of you and Grant's other appointments!

    Baby Birthday Ticker Ticker


    Pregnancy Ticker
  • You're definitely a trooper!  Love the family picture!  Grant is such a handsome little man.  Boo to a new cast and surgery again, but the cast is very festive.  I'm glad you were able to get Grant in somewhere that seems to be helpful and proactive.  Hang in there Mama, you're doing great!

    Baby Birthday Ticker Ticker

  • So glad that you were able to get in to see the specialist so quickly.  I think knowing, and getting a game plan in place are so much better than the not knowing.  Hopefully by Christmas you will have some answers.

    I know you are so ready to be up and walking but you will be there soon enough.  Praying that your boss will continue to be understanding!

    And like pp said, beautiful family picture!  It's so nice to see an updated one of Grant.  What a cutie!

    <a href="http://tinypic.com?ref=27yzkf5" target="_blank"><img src="http://i46.tinypic.com/27yzkf5.jpg" border="0" alt="Image and video hosting by TinyPic"></a><a href="http://tinypic.com?ref=2d14we8" target="_blank"><img src="http://i47.tinypic.com/2d14we8.jpg" border="0" alt="Image and video hosting by TinyPic"></a>br>[url=http://www.thebump.com/?utm_source=ticker&utm_medium=UBB&utm_campaign=tickers][img]http://global.thebump.com/tickers/tt145eac.aspx[/img][/url]<a href=http://lovebugs2012.blogspot.com/>February2012 Blog</a>
  • It must be a relief to have a diagnosis for Grant and to be getting tests done and knowing that he's in good hands. Did they give you any kind of indication on if he'll be expected to catch up and grow out of these issues?

    We all need help from time to time and don't feel bad about asking for it. One day down soon you'll all be doing fantastically and someone else will need help and you can pay it forward. That's what family and friends and Internet strangers! are for. I'm sure that you're family feels helpless watching what you guys are going through and are happy to help in any way they can.
    [IMG]http://i49.tinypic.com/ogmkjt.jpg[/IMG]
    <a href="http://lilypie.com/"><img src="http://lb2f.lilypie.com/W3hQm5.png" width="400" height="80" border="0" alt="Lilypie Second Birthday tickers" /></a>
  • Great update. I hope you will get more information to help you with getting Grant everything he needs. the family picture is beautiful- the foot-eek!
    [IMG]http://i50.tinypic.com/2wf0kmp.jpg[/IMG]
  • That is an awesome cast! Best one I have ever seen!
    Baby Birthday Ticker Ticker pics-25untitled_zps5ec34838Image and video hosting by TinyPic
  • imageJen0204:
    It must be a relief to have a diagnosis for Grant and to be getting tests done and knowing that he's in good hands. Did they give you any kind of indication on if he'll be expected to catch up and grow out of these issues? We all need help from time to time and don't feel bad about asking for it. One day down soon you'll all be doing fantastically and someone else will need help and you can pay it forward. That's what family and friends and Internet strangers! are for. I'm sure that you're family feels helpless watching what you guys are going through and are happy to help in any way they can.

    Well, we don't really have a diagnosis, just more of a diagnosis of symptoms.  All the tests are to try and find what is really going on.  It was confusing at the office because the doctor threw a lot of things at us and told us all of them were equally as likely. 

    I am lucky that we were able to get in so fast.  I guess they must have had cancellations because when we left Riley our feeding test was suppose to be for the end of January.  Same thing with the appointment with the pedi to begin with - If I didn't take the appointment they were offering me it would have been next year before he could have been seen.

    I didn't really ask about if he would be able to grow out of the issues because there were too many things that it could be right now.  I figure those were more questions to ask after the battery of tests they were going to run.

    I was pretty sad yesterday after the appointment because it made me realize not only how far behind he is, but how little he has progressed.  When we started OT at 7 months  - crawling by 1 was a goal - and that was a realistic goal by all accounts.  Now it isn't a realistic goal at all.  I also thought he would be an early talker, but we start speech therapy tomorrow.  The pedi also said we need to add PT to his list of therapies too.  Ugh.  I'm not so sure he will be caught up by kindergarten... or ever.



    BabyFruit Ticker
    Baby Birthday Ticker Ticker
  • Your family picture looks great!! Grant is so cute! I think the only photos I've seen of him are the ones in your siggy.

    I'm glad you all are on the right track to figuring out what's going on with Grant. I'll be thinking about you!

    Baby Birthday Ticker Ticker
  • imagepreggersINschool25:

    imageJen0204:
    It must be a relief to have a diagnosis for Grant and to be getting tests done and knowing that he's in good hands. Did they give you any kind of indication on if he'll be expected to catch up and grow out of these issues? We all need help from time to time and don't feel bad about asking for it. One day down soon you'll all be doing fantastically and someone else will need help and you can pay it forward. That's what family and friends and Internet strangers! are for. I'm sure that you're family feels helpless watching what you guys are going through and are happy to help in any way they can.

    Well, we don't really have a diagnosis, just more of a diagnosis of symptoms.  All the tests are to try and find what is really going on.  It was confusing at the office because the doctor threw a lot of things at us and told us all of them were equally as likely. 

    I am lucky that we were able to get in so fast.  I guess they must have had cancellations because when we left Riley our feeding test was suppose to be for the end of January.  Same thing with the appointment with the pedi to begin with - If I didn't take the appointment they were offering me it would have been next year before he could have been seen.

    I didn't really ask about if he would be able to grow out of the issues because there were too many things that it could be right now.  I figure those were more questions to ask after the battery of tests they were going to run.

    I was pretty sad yesterday after the appointment because it made me realize not only how far behind he is, but how little he has progressed.  When we started OT at 7 months  - crawling by 1 was a goal - and that was a realistic goal by all accounts.  Now it isn't a realistic goal at all.  I also thought he would be an early talker, but we start speech therapy tomorrow.  The pedi also said we need to add PT to his list of therapies too.  Ugh.  I'm not so sure he will be caught up by kindergarten... or ever.

    These babies are amazing, Grant might just surprise you.

    I know I haven't been in your shoes so I can't imagine what you're feeling, but I think you should just try to take it a day at a time. Kindergarten is a long way off, and you have too much on your plate to worry about that. Smile

    Image and video hosting by TinyPic Image and video hosting by TinyPic Image and video hosting by TinyPic Baby Birthday Ticker Ticker
    212 Facebook Admin.
  • Preggers I'm so glad you are finally getting some help for Grant. You guys have such a beautiful family and I think you're doing great. You keep pushing to get your little man the services he needs. I'm praying for you.
    [IMG]http://i49.tinypic.com/axv04.jpg[/IMG][IMG]http://i49.tinypic.com/j5ib2e.jpg[/IMG]
  • imagelancyjo:

    These babies are amazing, Grant might just surprise you.

    I know I haven't been in your shoes so I can't imagine what you're feeling, but I think you should just try to take it a day at a time. Kindergarten is a long way off, and you have too much on your plate to worry about that. Smile

    I think this is great advice.

    Also, your family is adorable.

  • So exciting to see an updated photo of Grant and of you of course! Keep your head up and hug that little boy. We're all thinking of you!
    Image and  video hosting by TinyPic
    Baby  Birthday Ticker Ticker
  • Prayers with you and family. Hope the surgery goes well.
    Pregnancy Ticker Baby Birthday Ticker Ticker Anniversary
  • Wishing you all the best for the slew of appointments/surgery dates you have coming up!  Your family picture is beautiful and Grant has changed so much.

    I'm glad you were able to get a closer appointment and it sounds like the doctor you saw is compassionate, but to the point.  Now that you have some answers, hopefully the ball will get rolling and Grant will get the help he needs.  

    And good for you for recognizing that you need a little help as well.  I hope you and the counsellor are a good fit.  Take care and keep us updated!! 

    Feb'12 March Siggy Challenge - Lucky Charm
    Image and video hosting by TinyPic
    Baby Birthday Ticker Ticker
    Image and video hosting by TinyPic
    BFP #3 - 05.20.11, EDD - 01.31.12, Logan is here! 02.05.12
    BFP #2 - 03.16.11, M/C 03.24.11
    BFP #1 - 10.17.10, Blighted Ovum dx, M/C 01.09.11
  • I agree with Lancy, just take it one day at a time. Kids are resilient and surprise us constantly, and it sounds like you're working with the right people. Think about how lucky Grant is to have you guys as parents - he's still really young and you've pushed for answers and are getting him help so early on. That's so great, and can only mean good things for him.
    [IMG]http://i49.tinypic.com/ogmkjt.jpg[/IMG]
    <a href="http://lilypie.com/"><img src="http://lb2f.lilypie.com/W3hQm5.png" width="400" height="80" border="0" alt="Lilypie Second Birthday tickers" /></a>
  • What a lot to handle all at once.  My friend's little boy is receiving very similar services and has progressed so much.  He was so fast at picking up the speech, I couldn't believe it!  I'm sure Grant will amaze you.

    You and your family will be in my thoughts and prayers, as usual! 

    [IMG]http://i45.tinypic.com/1zb41n9.jpg[/IMG]

    [IMG]http://i49.tinypic.com/2dgkdjc.png[/IMG]


    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Baby Names"><img src="http://global.thebump.com/tickers/tt13360e.aspx" alt=" Baby Birthday Ticker Ticker" border="0" /></a>

    [IMG]http://i46.tinypic.com/34q8tqd.gif[/IMG]
  • The good news is, you are doing the absolute best thing for Grant, and research has shown a million times over that the earlier the intervention, the better things are in the long run. You are a good mother, just know that in your heart. I wish I could give you a big hug. 

    I am glad you are getting the help that you need. Hang in there momma! 


    Baby Birthday Ticker Ticker
    Baby Birthday Ticker Ticker
This discussion has been closed.
Choose Another Board
Search Boards