Thursday, December 30, 2010
1. Signing Time - its 4.99 for the full version, but completely and totally worth it.
2. Free Toy Story Book
3. Talk T-rex
4. Pocket Zoo Free - yeah to say he's a little bit into animals is an understatement
5. Elmo's Monster Maker
I'm excited that thanks to Bridget we just got icommunicate today - so hopefully I'll be working on that to make some personalized boards for him to use like his communication builder device. We use tap speak - but there seems to be so much on icommunicate!!
If anyone else has any apps they like, please let me know so I can pass it along to a boy with the attention span of a gnat, who is loving loving loving his new toy.
Thursday, December 23, 2010
Isaac checking out Lily Juliette
Wednesday, December 8, 2010
Tuesday, December 7, 2010
Tuesday, November 30, 2010
Yesterday the boy woke up at around 8 am and then was awake the ENTIRE day until 9:30 pm. I don't have any idea how/why he did it but he was wild. It was amazing to see - and not really grouchy or anything. He had 3 therapy appointments during the day and I thought surely he'd nap afterwards - but he just got into other things and finally passed out. I'm not attributing it to the shot or any other supplement - in fact we didn't give him B12 yesterday for the first time in a long time. I guess he just wanted to play. :)
Monday, November 29, 2010
A good chunk of it focuses on the money and who fundraises which I guess is a positive thing - but the other stuff in there is mostly, well bleak. I think in the early stages of diagnosis it was very helpful with the information it provided - but now I think I'm better off not reading that each month.
Monday, November 22, 2010
This is my silly crew entertaining each other while I cook. Lucy is in Isaac's clothes because earlier in the day we were out and about and she had a poo explosion and I had only packed an extra outfit for Isaac (He is usually the messy one). They are really fun to hang out with these days. :)
Tuesday, November 16, 2010
Friday, November 12, 2010
Monday, November 8, 2010
Wednesday, November 3, 2010
So if we actually got more words signed then we might be able to use them more and more and he'll eventually process them upstairs and be able to say them. We've kind of been lazy on new words lately, so unless we are in a zoo his words are limited. :)
The boy also keeps running a fever - no ear infection to be found - they gave us some antibiotics today so we are hoping that stops very soon!!!
Monday, October 25, 2010
We never heard anything back about the ACTH test so we are guessing that is good news :)
We have a sleep study in November and cannot wait until we get back on the HgH! He's been off since July and we are really excited to get back on!
When we went for our PW appointment the first week of October he was in the 60th percentile for both height and weight and they were pleased, not concerned.
Sorry for the rambles, and blurbs but I wanted to update. OT has recommended using his z-Vibe more (vibrating the muscles around his face) and working with sour foods (like lemonade powder, we used cranberry crystal light today) to get him to use his mouth muscles. Speech Therapist has recommended working on single sounds and trying to get him to hum. He is trying to say everything these days it seems - he sounds wild, but he sure is trying! The humming because he is so into music and dancing and pretends to sing all of the time.
PT we still need to work on getting him to get himself out of the floor when there is nothing to pull up on - and crawling - he still struggles and doesn't do it often - we are all walking and FAST at that. We have used the exercise ball some and he is doing great. She recommended getting a little toddler trampoline for him.
Anyways - he is well and happy, which is all I've ever hoped for. Lucy is keeping him on his toes!
Here's a video of Isaac and his cousin Georgia at the Black Walnut Festival riding the carnival rides. He LOVED LOVED LOVED it!
Friday, October 22, 2010
Monday, October 4, 2010
He was in such a good good mood yesterday when we got to the hotel. He walked around and around in his Spider Man jammies before getting a bath and going to bed. I think he just likes having me and Eric to himself. :)
Monday, September 27, 2010
Thursday, September 23, 2010
So it made me extra specially happy to see my boy going wild today in PT and speech. He was back to his happy mobile little self. First, he said like 8 words he never really tried before and they actually sounded like what she was asking for. I swear the boy just tries to impress her. He loves her - its embarrassing almost. :) Then in PT he was sitting on the floor and getting himself up and then picking stuff up from out of our ottoman full of toys. This by far has been the hardest thing for him to get used to - using his arms to get himself up and around. Its like he hasn't figured out how to do it with the VEPTR in just yet. Plus he has such spindly little arms. But it will click - he's walking pretty well and all nosy and into everything like he was before :)
Sunday, September 19, 2010
Amazing Adventures of Ayden Jane: Sibling Effects: "I have posted before about the profound effect Kayla, Noah and Mckenna have on Ayden Jane and vice versa. I am so proud of all of them and ..."
Sunday, September 12, 2010
Isaac is looking and feeling pretty great right now. He is walking along the walls again - not completely back to his carefree walking self before - but getting around much much better. His smiley silly nature is back and he is getting quite attached to his sister. At his appointment on Thursday, the doctor took x-rays again and he said it looked great. His scar looks nice & thin as you can see in picture 2 there. And of course I had to throw in a little Lucy because she is cruising and into everything.
Monday, September 6, 2010
Wednesday, September 1, 2010
Sunday, August 29, 2010
He only stood for seconds at a time - and with great pain for the first couple of days. The last two days he stood for maybe a minute at a time but without the screaming. He didn't want to move his head at all in the beginning. Just now he will move it from side to side. I guess with kids when they feel the slightest pain they stop where with adults you can force them a little more. With us, when he screams we stop. Anyways - he is doing great now in comparison. I have pictures and x-rays to share as soon as I get it together but we just got back home and there is tons to un-pack. The smiley little boy is back and I am amazed how great this is going to be for him. Totally lifechanging.
Sunday, August 22, 2010
So on our list before we go home is 1) get him to walk (god help us on that one, because I think that may take weeks as big of a change this is for him) and 2) not have a fever for at least 12 hours in a row. Today we switched from the Lortab and Teradol (msp) to Tylenol with Codeine. He was itching pretty badly yesterday & he has been itch free today! We put him in a wheelchair 3 times today and took him to the playroom to look around - he barely holds his head up and kind of slumps in the chair, but we were out and about, so that's something.
Sorry to ramble we've just been couped up in here and are getting a little nutty. Oh and thankfully we will get to talk a PT before going home to give us an idea of the limitations we will be facing. Its looking to us today like its going to be a long road to complete recovery - but from what we've heard everything should be great in 3 or 4 weeks. Its just so hard for the little man right now - poor fella.
Friday, August 20, 2010
Thursday, August 19, 2010
He was in recovery for a few long hours but we finally got to see him in a regular room (not ICU as we expected). I will post pictures of my cute boy later - he looks a little rough at the moment. He did well and the device looks great apparently - he is still in a great deal of pain - and he kind of acts like he's scared to move. I got to hold him for a half an hour today - and he just blinked while i kissed him repeatedly.
I just wanted to throw a quick post out there - I'm just so ecstatic its over - Of course now I have to refrain from buying that $40 dollar elmo in the gift shop for the boy because lord knows he doesn't need another elmo stuffed animal. He already has a giant elmo balloon and a giant blues clues balloon and a horse we bought him yesterday - but when he's so pitiful I would seriously buy that child a Porsche if he asks (or signs please - that one gets me everytime).
Thanks for the prayers!!
Monday, August 9, 2010
Well Isaac is at my knee asking to watch Elmo videos on the computer right now, so obviously that's enough blogging for now. :)
Thursday, August 5, 2010
We leave this evening to go to columbus - Tomorrow he has to have his pre-admission testing done. Tomorrow I turn 30. oh joy. I think the combo of the back surgery and the tonsils - and the last day of my 20's just has me in a tizzy. :) Having a special needs kiddo really aged me like 30 years in 2. :) I have the white hair to prove it. He's cute though so I guess we'll keep him.
Tuesday, August 3, 2010
Of course the lady mentioned asking the orthopedic surgeon if we can take them out at the same time he is getting his back surgery and that kind of made me want to puke just thinking about my boy going through all that at once - so hopefully not TOO soon I guess.
Saturday, July 31, 2010
Thanks for the award Desirae - I appreciate the nod!!!
So I am going to pass it on to Adventures in Asherland http://www.amandagatkins.com/ and The Fields Triplets http://fieldstriplets.blogspot.com/ if they would like! They have great blogs that you should definitely check out!!!! Oh and check out Babies with iPads too - Bridget knows she's awesome so she doesn't even need an award :)!!
Friday, July 30, 2010
Thursday, July 29, 2010
Friday, July 23, 2010
Saturday, July 17, 2010
Tuesday, July 13, 2010
The dietician didn't really give any guidance - no charts, no numbers, no suggestions (other than to limit gatorade and juice, and sugary things like that - to which I wanted to sarcastically reply, oh really?) She said it seems like he's doing fine. I guess I should just be pleased and calm myself, but I get a little testy these days like I'm a constant advocate for the little man. Like I need to fight for him. Enough complaining! He's doing wonderfully though & we can't wait for his big party on Saturday!!! We still have to have a sleep study in Columbus on Thursday night and I think I'm going to take him by myself for the first time - so wish us luck!
Thursday, July 8, 2010
Friday, July 2, 2010
Tuesday, June 29, 2010
This week he's getting plenty of bonding time with his cousins, Emma and Georgia while they are all going to vacation bible school with Grandma and Grandpa. They have been swimming nearly every day and trying to wear each other out and get good and sleepy before they pump them full of sugar and throw them in with a bunch of other wild little kiddos at bible school.
He's getting braver walking around the house from thing to thing. I'm pretty excited at that and at how much he seems to understand when we are talking to him. He is trying to use more words, but the Speech Therapist really believes he'll take off as he gets stronger trunk wise. I'm excited for him and I'm trying not to go all overboard on the birthday - but I tend to do so when it comes to him.
Lucy is rolling all over and spinning in circles and eating like a little piggy. She's my sweet little chunky girl. She really likes her brother and gets all excited when he tries to talk to her. She's already saying ba ba ba and screaming loudly. She's going to be a talker and just wear Isaac out I think.
Wednesday, June 16, 2010
But with Lucy (who is *gasp* already 5 months) its like every day I look at her and she is doing something new. And its all so easy for her. She is already scooching herself back on the carpet and spinning in circles. She basically does baby pushups all day and smiles and laughs about it. :)
So it makes me think, wow, how hard things must be for Isaac. I never felt that way before about Isaac you know, but now that I have a constant comparison, its like I feel sorry for him? Does that make any sense? I know Isaac is doing so great and the happiest little guy on the planet, so its not like I have any reason to feel that way for him, but seriously this little pudgy girl is going to pass him up in no time. I feel bad he has to work so hard for everything, when Lucy doesn't have to.
I know that will always be the way it is and I need to deal with that. I had a PTSD like episode right after Lucy's birth where all that surrounded Isaac's birth came back in a bad bad way. I was terrified that it was all going to happen again and seeing what is "normal" put me in a tail spin. Isaac was my normal, and it took Lucy to show me how different he actually was. I'm in a much much better place now. But sometimes when Lucy does something awesome, its as if at first I don't get excited, but I'm like wow, I didn't even have to work with you on that, you just did it. Its not the same celebration, its more like oh, that's how its supposed to be. Now I don't want you to go around thinking that I'm not excited as all get out about ol Lucy Lu because I am - she is total sunshine and I constantly kiss the pudge's face, it will probably fall off soon from over-kissing - I just celebrate her milestones much much differently I guess.
Anyways, as if there really is such a thing as "normal" :)