Update (long)
preggersINschool25
member
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:
Here are links if you want to see my foot, my skinny leg, and Christmas cast (in that order)
https://i26.photobucket.com/albums/c112/jjewels119/20121205_100855.jpg
https://i26.photobucket.com/albums/c112/jjewels119/20121205_101240.jpg
https://i26.photobucket.com/albums/c112/jjewels119/20121205_142752.jpg
Re: Update (long)
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!
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.
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!!
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!
212 Facebook Admin.
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!
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.
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!
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.
212 Facebook Admin.
I think this is great advice.
Also, your family is adorable.
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!!
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
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!
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!