So my little guy LOVES LOVES LOVES the ipad that Santa brought him for Christmas. And since I'm just as excited about it as he is (I think I've downloaded every special needs app that exists, at least 4 million I'd say) and in honor of Bridget (Babies with ipads), I'm going to put Isaac's favorite apps of the moment on here for those of you out there who are just dying to know what entertains my silly little guy. :)
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 30, 2010
Thursday, December 23, 2010
The new cousin
Isaac checking out Lily Juliette
Lily was born on December 7th and weighed 6lbs and 4oz. She has dark hair (she might have a shot at a tan, which is amazing considering my brother is as fair as I am) and was super long at 19 3/4 inches. She had to stay in the NICU for almost 2 weeks trying to get the feeding thing worked out - she has a cleft palate and lip - but now she's doing great eating and is at home with a very happy mommy and daddy. Isaac & Lucy love her and can't wait to see her again soon!!!
Waiting for Christmas :)
Wednesday, December 8, 2010
Tuesday, December 7, 2010
I've lost my camera . . .
and that panics me! I take at least 5 pictures a day of my kids so to go a week without it has been hard. I need to find it before all the big holiday stuff starts!! Plus I need it because I'm an aunt again today!!!
Tuesday, November 30, 2010
We are back on the HgH - We are very thankful!!
So the day before Thanksgiving we were cleared to give Isaac his shots again - same dose for now (.4 mg) and luckily we had some left so we could start right away. It was weird for us getting back in the groove of the shots - especially now that he has a lot more leg to give it in. But we had a lot to be thankful for on thanksgiving this year!!
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. :)
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
Does the "Gathered View" depress anyone else?
Mind you I'm a positive person - but I can't hardly bring myself to read that thing. The Gathered View is a newsletter put out by the PWSA- USA. Its bleak. Its "inspiring" stories are not inspiring. It just reinforces the sadness I felt when our baby was diagnosed and reminds those of us presently in the blissful hyperphagia free land of the food stealing horror to come.
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.
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
My Happy Little Kitchen Band
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
Clint Hurdle is coming to Pittsburgh
So the Pittsburgh Pirates hired Clint Hurdle as their new manager. Who is Clint Hurdle you may ask? Well his daughter has PWS and he's a huge advocate for our cause!!! I guess he was impressed with Pittsburgh's Children's Hospital so it makes me want to check it out. Its just as close as Columbus really. We are lucky to be central to so many choices I guess. Yeah lucky we don't have a children's hospital in our own state - how messed up is that. Go Pirates!
http://www.usatoday.com/sports/baseball/nl/rockies/2005-09-12-hurdle-family-cover_x.htm
http://www.usatoday.com/sports/baseball/nl/rockies/2005-09-12-hurdle-family-cover_x.htm
Friday, November 12, 2010
Sleep study on sunday - hoping to get back on the Hgh
Isaac hasn't been on growth hormone since July 21st. :( But now the titanium infused, tonsil and adenoid-less Isaac may get to go back on as early as next week!! He's already wild - we can only imagine what it will be like to get back on the good stuff. We have high hopes all will go well on Sunday night with his sleep study - so keep us in your prayers! You have no idea how much this stuff means to PW kids!!!
Monday, November 8, 2010
Love is all around :)
We took the kids to see Veggie Tales last week, which Isaac enjoyed, until Maddy (the most adorable 2 year old blonde cutie from Sunday School) sat next to us. First thing she did upon sitting next to us was to lean over and kiss Isaac straight on the lips. Then it was Maddy Tales for Isaac as all he wanted to do was sit next to her, hug her, smooch her, and play with her hair. I was embarrassed, but it was cute, so I didn't really know what to do. The boy is a lover I swear. He loves the love. Most kids aren't into his affection, but Maddy sure didn't mind a hug now and again. They were two little buddies and I loved it. My guy made a friend. :)
Wednesday, November 3, 2010
Focusing on some sign language
So this week I bought pretty much everything Amazon had to offer which was Toddler/Baby sign language related. Isaac is doing great signing these days and what is surprising to me is that the words he signs the most are the ones he is starting to verbalize. More is signed and now accompanied by "mo mo" and please even has some verbal thing to it (which you can't really understand as please but he's signing please, so I am pleased :)
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!!!
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've been busy!
We've been all over lately! I love fall!! Its my favorite time of year!! & its festival season here in WV so there's always stuff to do! I feel like we are really getting the kids out there. I have started taking them to a play group at the library & they have been enjoying that (they even had a Halloween party like they were big kids!).
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!
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
Babies with iPads: I uses the iPad to match animal sounds
Babies with iPads: I uses the iPad to match animal sounds: "I is developmentally delayed due to Prader Willi Syndrome. He is using the iPad to match animals and animal sounds. He is also imitating s..."
Monday, October 4, 2010
Tonsils & Adenoids are out
We are in Columbus today and his surgery has just now finished. Apparently his tonsils were big but his adenoids were huge. She said we should see a big difference. I'm excited!
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. :)
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. :)
VEPTR x-rays: Before and After
Monday, September 27, 2010
Thursday, September 23, 2010
2 year pedi appt - a little late
So in the midst of all that was the month of August I kind of forgot about the boy's 2 year pedi appt. When someone from the hospital called to discuss his upcoming tonsil surgery she asked if he was up to date on all his immunizations I realized I forgot - so two months late we scheduled an appt - and wow - he jumped from the 5th percentile in weight to 60th percentile - PANIC SETS IN. But I have to remind myself that first, its two months late (doesn't this count for something???) and the boy has been sedentary and off growth hormone for two months!!! I'm not really flipping out too much just yet - I just want to get my little man moving again! (and back on the hgh!)
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 :)
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
Wow I have to say reading this blog post tonight brought a tear to my eye - how special siblings are in a PW child's life. Where she writes about seeing God so vividly in filling in all of the weakneesses - I pray for faith and courage daily and its sweet to see a child who has so much faith. :)
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 ..."
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
Looking Good
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.
Thanks everyone for their thoughts and prayers! He is really getting along great. The improvement in his breathing is amazing. He no longer snores all night! He is so straight its just crazy. It has made such a huge difference and to think that he'll be able to grow straight like that now just makes me so excited.
Monday, September 6, 2010
Walking a little
So the boy is walking a little around holding our hands (and actually using the support). He chased his cousins around this weekend so that was a great motivator. He's still getting his medicine about once a day and getting fatigued pretty easily. His follow up appointment with the surgeon is on Thursday so hopefully we'll see if we need to be doing more/something different and see how the doctor thinks he's doing.
Wednesday, September 1, 2010
His back after VEPTR surgery
I'm posting this for those out there interested in VEPTR surgery - because honestly there is so little information out there on it. Isaac has 3 scars on his back which I know will look even better once all the nasty plastic and bandages come off but just to give you an idea of it - Here is his back after surgery. He has one longer scar at the top in the middle and two smaller scars on both sides of his lower back which are partially hidden by the pamper. Much smaller than I'd envisioned in my mind - and already healing. I'll have to show another picture after the bandage comes off.
My boy is cruising again :)
After a healing hug from cousin Georgia
Tonight Isaac and Lucy both cruised around the ottoman! Its crazy! I'm scared what the next few weeks mean for me since they are both getting so mobile at the same time . . .
Well, its been 2 weeks today since his surgery and he is doing so great!!! On Monday he took 10 steps for my Dad (my dad just held his hands and along the boy went). Then yesterday he walked a little so my Dad could show my mom. He obviously works hard to please my parents :) and tonight he walked around the ottoman on his own with Daddy following close behind. He sits on his new rocking horse without any complaint and has started to roll again. He isn't sitting himself up yet or anything but he is definitely making progress!!!
Sunday, August 29, 2010
Sorry - We have been off the grid for a week
So we got out on Monday because I think the doctors were sick of us. It was like well the fever was gone for 12 hours and boom out the door. We loved it. Just be difficult I guess and make a lot of demands and they will get you out the door quickly. We didn't get to see a PT and lord knows the boy wasn't walking - he's still not walking a week later - but we were free!!! Isaac did pretty well on the drive home with some big pillows and for the last week he's been sitting in a pile of pillows at Grandma and Grandpa's house in Precious little Procious, WV where there is no internet (sorry blog). I didn't think Eric and I could handle it on our own since Lucy is crawling and all over the place. It was so nice to be near the grandparents (on both sides) to help because the first days home were crazy.
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.
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
Day five post surgery - Dear lord please get us out of here
So the little boy is still in pain & does not want to sit up. Further he does not want to attempt to walk, and does not want to be touched by anyone anymore. I feel sorry for the cutey and hope and pray we get to take him home soon because maybe it will be a little better there on our own turf. He has eaten and went to the bathroom, but he has had a fever the majority of the time since surgery.
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.
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
Day three post surgery update
So today the boy sat in a chair surrounded by pillows all by himself. :) He read every book we brought, which was around 100 books - and flashcards. He is doing exceptionally well according to our doctor and may be released Saturday or Sunday, which is pretty mindblowing. He still cries when we move him around from place to place or even when we switch positions in bed - but tolerates the position after we get him there. Last night we had a little freak out when he was woken up by a noise and he screamed for around 5 minutes like he was in some medicine induced nightmare - wasn't pretty - poor fella and mommy were crying. He got some pain medicine and calmed down.
He is eating real food today -1st meal: 3 mini pancakes, strawberry yogurt and a banana. They took out the catheter this morning and took him off Oxygen (they figured his baseline breathing was lower anyways because of his sleep apnea - so he normally breathes around 90 which is around where his 02 level was lingering without the oxygen). Really he's only hooked up to an IV. Still had a lingering temperature this morning so we started a new medicine that I can't remember the name of off the top of my head - but he's on it and Lortab. It kind of scares me that they are going to let us take him home already - wowza. But he is feeling much better today and you can see it.
Oh and remind me to post a picture of our before x-ray and after x-ray - it is INSANE the difference. INSANE! Must get to a scanner soon!!!
Thursday, August 19, 2010
We made it through surgery fine - to the healing part now!
So the surgery yesterday was just a little less than 4 hours start to finish. I honestly heard the words "excited" and "lucky" come out of my mouth when talking to the surgeon before he went in. In reality I was pretty terrified - but am so so glad it all turned out so well so fast. When they called us early and said he would be out about half an hour earlier than expected I PANICKED - because I seriously thought something must have gone wrong and that is why it didn't last as long as we thought. How was I to know it was because everything went so well? Its just crazy and an amazing blessing. So many many many answered prayers.
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!!
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
OTL: Pau Gasol And The Path Not Taken
I like how Gasol asks what the pulmonary implications for a 2 year old would be if you fused their spine at that age. Um not very good Pau, that's what we were told. :)
Pre-Admission Testing done, the countdown begins . . .
Well after a 5 hour long series of appts Friday we are ready for VEPTR surgery I guess. Poor little boy got stuck 7 times trying to get the blood tests needed done. After awhile I thought they were just digging for veins - it wasn't pretty. He looks like a heroin addict today with all the bruises.
Well Isaac is at my knee asking to watch Elmo videos on the computer right now, so obviously that's enough blogging for now. :)
Well Isaac is at my knee asking to watch Elmo videos on the computer right now, so obviously that's enough blogging for now. :)
Babies with iPads: I imitates animal sounds using the iPad
Babies with iPads: I imitates animal sounds using the iPad: "I is making animal sounds when he sees the animals or imitates their sounds after he hears them. "
Thursday, August 5, 2010
blah
So Isaac's tonsil surgery is going to be october 4th - he had to wait 6 to 8 weeks after the first one to recover. They couldn't do it at the same time because there was no ENT surgeon available on the 18th (when his back surgery is scheduled). Anyways it stresses me out either way. I wasn't wanting him to have both at the same time really. I know it really won't be that long - but boy we miss the HgH. Right now I basically let him sleep with me and Eric and stare at him snoring the whole night. Good god, and to think that the HgH can make them grow back again. So crazy.
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.
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
Tonsils & Adenoids OUT - woohoo!
Ok so we knew it really before we even went to the ENT today - but the boy has to have both out and I think its going to help him SOOOOO much. Hopefully everything will work out and he can have them out soon and get back on that growth hormone!!!
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.
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 Desirae for the Blog Award!!!
Desirae from Our Life with Prader Willi Syndrome in Las Vegas (http://pwsvegas.blogspot.com/ - sorry I'm not great with the linking) gave me my first blogger award! So now I'm supposed to share 7 things about myself as part of the rules:
So hmmmmm . . .
1) I actually enjoy watching Yo Gabba Gabba along with Isaac and Lucy.
2) I have more freckles than I know what to do with - and I promise I wear SPF 4 million daily.
3) I have needed to have my wisdom teeth taken out since before Isaac was born in 2008 but I keep putting it off, and no they are not giving me any extra wisdom by hanging around.
4) I love "Arrested Development" and cannot wait for the movie to come out!!!
5) I want an iPad so badly now that one of our therapists is using one with Isaac.
6) I could live off of chips and salsa - I'm sure of it.
7) I have been trying to lose the 40 lbs I put on with Isaac since well forever (except for that pregnant with Lucy period) and I cannot seem to do it and the fact that I can't lose weight without all the PWS issues makes me so panicked about Isaac and his future food issues that I want to stress eat (which my husband said is absolutely silly, so put down the food angie).
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
Babies with iPads: I. signs using the iPad
Babies with iPads: I. signs using the iPad: "My video skills are for the birds so sorry. I is finding animal pictures on the iPad and signing the animals as they made the sounds. He ..."
Thursday, July 29, 2010
Friday, July 23, 2010
Frickety frick - we have sleep apnea
Well we have to stop the HgH for a little while so we can go for an ENT consult and see about possibly getting his tonsils/adenoids removed. He has an obstructive apnea. We want what's safest for him - no doubt - but its just sad to go off his wonder drug. :) It makes me think back to life without growth hormone . . . :(
Saturday, July 17, 2010
Tuesday, July 13, 2010
He's Looking Good!
So the boy is 34 inches tall (in the 55th percentile) and 24 lbs (for the first time in his entire 2 year life on the charts at the 9th percentile) and they were very pleased with him! We didn't see the geneticist at this appt (who we like) but the endocrinology doctors were nice. They didn't increase his HgH - he just hasn't gained enough weight to do so. The doctors were "nice" - I hate to get locked into that, I'll keep people around longer than I should because they seem nice enough - I hate to "break up" :) My husband is thankful for this trait in me and he kind of has it himself. :) I miss Dr. Hardin - she was awesome - these people are just ok. I feel like its a wasted drive somewhat. We do like the orthopedist that is doing his VEPTR surgery in August so we are kind of stuck in a relationship with Columbus now.
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!
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
PWS Clinic in hours
Yeah so I'm up still trying to get things done and we have to leave in like 4 hours to go to Columbus for Isaac's PWS clinic appointment - I'm betting I'll be regretting the lack of sleep later. :) But I am excited to show him off at our appointment - He's done so much since we last saw the doctors! I really am proud of how far he's come. The PT said this week that his legs were getting more definition and getting much bigger. The creatine is helping (even though its not a daily thing, I still worry) and he just seems to be doing so well. We still haven't had the sleep study done that we were supposed to before our appointment, in fact its scheduled for next week (yay two weeks in a row to drive to columbus, oh joy) - but we are hoping that if all goes well with that they'll agree to up the Hgh. Well I hope this makes sense, because good lord I'm tired.
Friday, July 2, 2010
My tribute to our beloved Senator Robert C. Byrd
Ok, its a little wacky, um maybe a little messed up to post this. But when my little boy was born the only thing I could think of was my god he looks like a little Robert C. Byrd. A little sickly Robert C. Byrd. It was the only thing that got me and my husband through that first week I think was to laugh at that - yeah I know, what a weird sick sense of humor we had. Good lord we even looked up what the C stood for in case we needed to name Isaac that. We did not (since it was Carlyle :) but it kept our mind from thinking wow, what is wrong with our poor little man.
Robert C. Byrd passed away this week at the age of 92. I, like every other West Virginian, loved him. Here is my tribute to him. :)
Tuesday, June 29, 2010
Countdown to 2
I can't believe it but its almost here! My little man is going to turn 2 on July 17, 2010. I decided to try to branch him out of Elmo world by having a Mickey mouse party, but the boy isn't wavering from his Sesame Street fascination. Its so cute. The only other show that really gets him going right now is Yo Gabba Gabba. The boy really loves to dance. :)
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.
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
A little rambling thought
I want to preface this by saying I love love love love love my babies. I love them both a whole lot. I have to say that this second one is just growing up way too fast and its blowing my mind. Having Isaac as our first child was such a completely different experience. I had the chance to appreciate every little thing with him. My brother joked with me once that I clap for Isaac even when he poops, but you get the idea.
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" :)
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" :)
Monday, June 14, 2010
Been MIA. Back from the beach :)
Isaac and Lucy had a great time with their cousins and family at the Beach this week. We went to Rodanthe, NC on the Outer Banks. The weather was great and the kids loved swimming. Here are just a few pictures. Lucy turned 5 months today which is insane. And its only a matter of weeks til my precious little boy turns 2! Sorry for the sideways pictures once again. :)
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