Can anybody find me somebody to love?
Each morning I get up I die a little
Can barely stand on my feet
Take a look in the mirror and cry
Lord what you're doing to me
I have spent all my years in believing you
But I just can't get no relief, Lord!
Somebody, somebody
Can anybody find me somebody to love?
I work hard every day of my life
I work till I ache my bones
At the end I take home my hard earned pay all on my own -
I get down on my knees
And I start to pray
Till the tears run down from my eyes
Lord - somebody - somebody
Can anybody find me - somebody to love?
(He works hard)
Everyday - I try and I try and I try -
But everybody wants to put me down
They say I'm goin' crazy
They say I got a lot of water in my brain
Got no common sense
I got nobody left to believe
Yeah - yeah yeah yeah
Oh Lord
Somebody - somebody
Can anybody find me somebody to love?
Got no feel, I got no rhythm
I just keep losing my beat
I'm ok, I'm alright
Ain't gonna face no defeat
I just gotta get out of this prison cell
Someday I'm gonna be free, Lord!
Find me somebody to love
Can anybody find me somebody to love?
Queen - Somebody To Love lyrics
Funny how you start to find little things that have been there all along. :o)
Thursday, December 22, 2011
Tuesday, December 20, 2011
Thursday, December 15, 2011
Addie's 6 month well baby
Addison weighed 20 lbs, 9 ozs and was 27 and 1/2 inch long. Her head circumference is 49cm and seems to be slowing down in growth, which for now is a good thing. It's a delicate balance between wanting her head to grow some so that her sutures don't start to close but not so much that it will make her lose head control. So a slow down but still growing is good.
Dr. N was thrilled with her! She said 'she's miraculously." Addie is sitting up, officially at 6 1/2 months old. We're still working on sitting skills with PT because the PT goal is to be able to sit her up on the floor and walk away from her and not worry about her falling over, but her PT said that's not the same as a milestone of sitting up and as far as the medical community is concerned Addie is sitting up. We're so proud of her!! It's really amazing, considering what a noggin she has on her!
She is rolling over back to front now, and has begun to barrel roll. She's reaching with BOTH hands now and will even cross midline with one hand to get something on the opposite side of her body. AWESOME!
Dr. N said we always look at how the child is doing and the scans are secondary, and that what Dr. K meant was that given her head circumference increase, she would have assumed that her brain tissue had expanded, and that when she saw that it hadn't increased since August, she was assuming that Addie was under pressure still. Which made total sense to me. So then Dr. K saw Addie and watched her in person and that threw all the assumptions she had formed based on her head circ and scan out the window. So we are going by how Addie is doing, first and foremost. Dr. N also said that she trusts Dr. George completely, which I do as well, but that there is nothing wrong with asking what the plan was as far as Addie's ventricle sizes go! So that's the plan. But it can definitely wait til February, at her next follow up appointment.
Addie got her six month vaccinations and we went ahead and gave her the flu shot. I've never given my kids the flu shot that young, but Addison is a different kinda kid. She's too young for anti virals and with her hydro, things aren't as 'straight forward' as with other kids. So I agree 100% with given her the flu vaccination. She'll have to go back for a booster in January. She did run a bit of a fever later that night but she never lost her appetite and the fever was gone the next morning. So not a bad reaction in my book!!
Dr. N was thrilled with her! She said 'she's miraculously." Addie is sitting up, officially at 6 1/2 months old. We're still working on sitting skills with PT because the PT goal is to be able to sit her up on the floor and walk away from her and not worry about her falling over, but her PT said that's not the same as a milestone of sitting up and as far as the medical community is concerned Addie is sitting up. We're so proud of her!! It's really amazing, considering what a noggin she has on her!
She is rolling over back to front now, and has begun to barrel roll. She's reaching with BOTH hands now and will even cross midline with one hand to get something on the opposite side of her body. AWESOME!
Dr. N said we always look at how the child is doing and the scans are secondary, and that what Dr. K meant was that given her head circumference increase, she would have assumed that her brain tissue had expanded, and that when she saw that it hadn't increased since August, she was assuming that Addie was under pressure still. Which made total sense to me. So then Dr. K saw Addie and watched her in person and that threw all the assumptions she had formed based on her head circ and scan out the window. So we are going by how Addie is doing, first and foremost. Dr. N also said that she trusts Dr. George completely, which I do as well, but that there is nothing wrong with asking what the plan was as far as Addie's ventricle sizes go! So that's the plan. But it can definitely wait til February, at her next follow up appointment.
Addie got her six month vaccinations and we went ahead and gave her the flu shot. I've never given my kids the flu shot that young, but Addison is a different kinda kid. She's too young for anti virals and with her hydro, things aren't as 'straight forward' as with other kids. So I agree 100% with given her the flu vaccination. She'll have to go back for a booster in January. She did run a bit of a fever later that night but she never lost her appetite and the fever was gone the next morning. So not a bad reaction in my book!!
Friday, December 9, 2011
Second trip to Duke
Adam and I took Jack and Addie to Raleigh Durham for Addie's second stem cell infusion on December 2nd. We were delighted to have Adam's family fly up to meet us and stay a few nights at the hotel in Raleigh. It was great to meet up with Adam's family and spend a little time with them so close to Christmas! We definitely do not get to see them often enough!
Too quickly it was time to say bye to Adam's family Sunday morning. As a family of four, we mainly stayed in the hotel the rest of the trip. It was more of a laid back trip this time around, as it's Adam's last vacation time before Addie's next infusion in June.
We did get to try The Pit BBQ restaurant in Raleigh this trip and enjoyed it! Definitely worse going back to it next trip. Their banana budding is AMAZING!
Tuesday was our infusion day. We didn't need to be at the hospital til 10:30am.
It was a special day for Addison, not only because she was receiving more of her stem cells in the hopes that it would offer continued healing of any brain damage she sustained before she was shunted, but also because she was meeting a fellow hydro buddy for the first time.
Miss M was born just three days after Addie and her mom and I met on a support group on Facebook. We were able to schedule their infusions for the same day! We ran into them in the hall way before we were called back for Addie's initial exam and then we were placed in the room next to them for the actual infusions.
Addie did great during her infusion! She watched the entire process, wanting to sit up and NOT lie down this time.
They got her IV started on the first stick which was great! Dr. K was very impressed with how well Addie is doing. She said she was prepared to see a totally different child based on her head circumference increase and the fact that her scans don't show a difference in her ventricles since August. Her words were "She's doing much much much better than her scans and head circumference increase would have indicated." She does want me to follow up with George about the lack of decrease in ventricle size, which I had already intended to do, but it will be nice to have a litle medical enforcment when we see him in February.
As we were being discharged, Dr. K and I were marveling at what she might be doing by the time they see her for her third infusion. Dr. K said "She'll be walking!" Very exciting to think of the possiblities! We're thrilled with how well she's doing and pray she continues to do as well, but we know there are many ups and downs with hydro. We celebrate all the good days and all the milestones and are still trying to enjoy every moment!
We flew home to find an inch of ice on our windshield that had been sitting in long term parking for five days! It was good to be home though. Addison is still a great traveler, though she did not want to go to sleep on the plane. I think she was scared she'd miss something. She is a very curious little girl, which I love!!
Too quickly it was time to say bye to Adam's family Sunday morning. As a family of four, we mainly stayed in the hotel the rest of the trip. It was more of a laid back trip this time around, as it's Adam's last vacation time before Addie's next infusion in June.
We did get to try The Pit BBQ restaurant in Raleigh this trip and enjoyed it! Definitely worse going back to it next trip. Their banana budding is AMAZING!
Tuesday was our infusion day. We didn't need to be at the hospital til 10:30am.
 |
| In the car on the way to Duke |
 |
| We were greeted with Christmas Carollers in the lobby |
Miss M was born just three days after Addie and her mom and I met on a support group on Facebook. We were able to schedule their infusions for the same day! We ran into them in the hall way before we were called back for Addie's initial exam and then we were placed in the room next to them for the actual infusions.
Addie did great during her infusion! She watched the entire process, wanting to sit up and NOT lie down this time.
They got her IV started on the first stick which was great! Dr. K was very impressed with how well Addie is doing. She said she was prepared to see a totally different child based on her head circumference increase and the fact that her scans don't show a difference in her ventricles since August. Her words were "She's doing much much much better than her scans and head circumference increase would have indicated." She does want me to follow up with George about the lack of decrease in ventricle size, which I had already intended to do, but it will be nice to have a litle medical enforcment when we see him in February.
As we were being discharged, Dr. K and I were marveling at what she might be doing by the time they see her for her third infusion. Dr. K said "She'll be walking!" Very exciting to think of the possiblities! We're thrilled with how well she's doing and pray she continues to do as well, but we know there are many ups and downs with hydro. We celebrate all the good days and all the milestones and are still trying to enjoy every moment!
We flew home to find an inch of ice on our windshield that had been sitting in long term parking for five days! It was good to be home though. Addison is still a great traveler, though she did not want to go to sleep on the plane. I think she was scared she'd miss something. She is a very curious little girl, which I love!!
Wednesday, November 23, 2011
Awesome news!!!
Since Addison turned six months old Sunday, she was finally old enough to have a TB skin test done. Her nurse came by this morning to read the test and it was negative!! So thankful and thrilled!! No more INH meds twice a week. No more nurse visits once a week. No more restriction on Tylenol usage (INH and Tylenol both metabolize in the liver and they didn't want to stress her liver too much). No more masks for the doctors at Duke to wear when we're there for her infusions! YAY!!
Addison also had an MRI this week. Just a fast acquisition one. She rocked it out. Laid there, looking all unimpressed. They swaddled her and wrapped her in what looked like a very large blood pressure cuff and then blew it up to hold her as snug as possible in the machine, so she wouldn't have to be sedated.
As soon as we got back to the car, I put the disk into the laptop and pulled up the scans. They looked good to my eyes. Not much change since August, but stables vents is a good thing. We were told no news was good news regarding the official report and it's Wednesday night, and I haven't heard from George's office. So I'm officially declaring good news! I will talk to George about the size of her vents not changing much in three months... but that can wait til her next appointment in February!!!
We have plans to hang out around the house tomorrow and watch the parade and football. We aren't heading to Mom and Dad's til Friday for our Thanksgiving celebration on Saturday. Will post more about Thanksgiving after the weekend.
Happy Thanksgiving everyone!! So much to be thankful for this year!
Addison also had an MRI this week. Just a fast acquisition one. She rocked it out. Laid there, looking all unimpressed. They swaddled her and wrapped her in what looked like a very large blood pressure cuff and then blew it up to hold her as snug as possible in the machine, so she wouldn't have to be sedated.
As soon as we got back to the car, I put the disk into the laptop and pulled up the scans. They looked good to my eyes. Not much change since August, but stables vents is a good thing. We were told no news was good news regarding the official report and it's Wednesday night, and I haven't heard from George's office. So I'm officially declaring good news! I will talk to George about the size of her vents not changing much in three months... but that can wait til her next appointment in February!!!
 |
| August on the left, November on the right. Still a lot of fluid but STABLE |
We have plans to hang out around the house tomorrow and watch the parade and football. We aren't heading to Mom and Dad's til Friday for our Thanksgiving celebration on Saturday. Will post more about Thanksgiving after the weekend.
Happy Thanksgiving everyone!! So much to be thankful for this year!
Sunday, November 20, 2011
Happy 1/2 Birthday Addie Baby!!!
We celebrated her 6mth birthday with yummy green beans, her first taste of real food (rice cereal does not count). Addie didn't agree on the yummy part.
Monday, November 14, 2011
Neuro Follow Up and A New Specialist
Adam, Jackson, Addison and I had a full day today!! Addison had appointments with both her ophthalmologist, Dr. R, and her 3 month follow up with her awesome neurosurgeon, Dr. G!
She was a rock star. She didn't cry when they put drops in her eyes to dilate them. She did fuss some when I had to hold her down and her ophthalmologist held her eyelids open to look at her optic nerves. I'm thrilled to report that her optic nerves look great. I know of several hydro kiddos that have optic nerve issues, where the nerves are either thin or short because of the pressure hindering their developmental while these babies are in utero. Thanks be to God that Addie's are "normal". Her doctor feels she may be visually delayed but that she's catching up and has normal vision as well and doesn't need glasses. She ALSO doesn't think Addison has strabismus but that she has pseudostrabismus . Basically that her eyes aren't actually crossed but appear crossed often because of how broad her nose is and as she grows and her nose develops the appearance of her eyes crossing will change. Addison did not cross her eyes for the doctor, of course. She had just woken up for a nap, which I made sure to tell the doctor. An infant's vision is always best when they are well rested so I knew she needed to know that little tidbit. I had my camera with me, thankfully, and pulled it out to show the doctor what we had seen as crossed eyes. She pointed out the reflection of the flash in her eyes and that it's lined up, which indicates that the eyes are actually aligned. Good to know and you can believe I'll be watching for that in future pictures.
As far as CVI goes, her ophthalmologist doesn't think she has it. I told her about the brain damage and evidence on her MRI and the warning that Dr. G gave us about the brain damage in her occipital lobe but she tracked well for Dr. R and scanned her face, etc. So I'm sitting there in the doctor's office holding her, and asking questions like.... so we just need to keep working on tracking exercises? And Dr. R. is like nope. I'm all but do we need to keep using lights and texture and ..... and..... and Dr. R is like patting me on the hand saying "She has NORMAL vision, normal structure and no muscle issues. You don't have to do anything." And I look at her and go "But I don't know how to handle not having homework!" And I laughed. It was such a WONDERFULLY new experience to not have to make a list of things we need to work on. I do realize that diagnoses can change and doctor's opinions can vary, so I'm not unaware that we may have some new vision labels at her six month follow up appointment but we CELEBRATE every piece of good news we get and try our best to live in the moment and that was a great moment.
We left her eye doctor and went by Torchy's to get my taco fix. It was a beautiful day outside, thankfully slightly overcast so we didn't have to worry about Addie's dilated eyes too much. She slept in her stroller while we sat on the patio and chowed down on tasty tasty shrimp tacos!
We were e a r l y (what?!) for Addie's nsg appointment and they were running.... get this..... ON time?! Double what?!! We were back in the office only 5 mins after her original appointment time. We saw a CNP first... and to be honest, I was a little taken aback by her line of questions. After asking her age, the first thing she asked was "So is she sitting up yet?"
Don't get me wrong, I KNOW Addison is doing amazing. I know that the amount of head control she has, her ability to get up on her arms while on tummy time, the fact that she's rolling over, that she's weight bearing on her legs and bouncing in her saucer already, the fact that she's soooo close to sitting up and isn't even six months old yet... well those things are all awe-inspiring really and not a day goes by I don't sit back in wonder as I watch her. I know that she is pretty freakin' awesome. But I also know what hydrocephalus can do. I know that sitting up by 6 months in a severe hydro kiddo is pretty unheard of. And if I know those things, I would assume the CNP would too.
So.... I was surprised that a medical professional that works in a pediatric neurosurgeon's office would ask such a sensitive milestone question like that. It gave me pause and made my heart ache, not for Addie who is not sitting up yet, but for all those other hydro moms and dads that are still waiting for the first smile, the first head lift off the ground during tummy time, the first laugh, the first step months past when their kiddos "should" be doing these things.
I looked at her and blinked my eyelashes a little and said... "Not yet. But she's doing amazing for a child that has a 2 yr old's head on a 12 month old size body. " (She weighed 20lbs 11ozs in all her clothes!!!!)
We saw Dr. G and as always LOVED him. He does want a scan done, just to maintain baseline scans. He said he is "happy" and "not concerned". Her head circ had jumped 2.6 cms in 3 months which is more than normal. But Addison's size is MORE than normal. Her soft spot is sunken and we know her eye exam showed this morning that her brain isn't under pressure so that contradicts the jump in head circumference being from pressure. But I'm glad to be getting a peak inside her little head. To be sure.
He was talking to Addie and told her "I don't think your mom likes me much." To which I replied "Her mom likes you very much, but she doesn't want to have to see you much." He joked about it hurting and that he's just the friendly neighborhood neurosurgeon that everyone's happy to see when they need him, and then poof, no one wants him around anymore when things are good. *chuckles*
As much as I do love him, and I do. Any person that performs life saving surgery on your child is gonna have a special place in your heart....always! But as much as I do love that man.... I'm hoping we don't have to see him til February...which is when her next follow up is scheduled, barring something wrong on her scans.
The MRI that he ordered is just a fact acquisition scan, so no sedation. THANKFULLY! And he wanted it done in the next two weeks. He blamed our 'jetsetting' ways for the reason he wanted the scan. Addison's second stem cell infusion is scheduled for December 6th. So excited about it. We are planning on meeting Adam's family over the weekend and another hydro family is scheduled for their daughter's second infusion the same day! It'll be our first hydro meet up! YAY!
Praying her scan shows lots of fluffy brain tissue and no issues so we can get those stem cells infused on schedule!!
She was a rock star. She didn't cry when they put drops in her eyes to dilate them. She did fuss some when I had to hold her down and her ophthalmologist held her eyelids open to look at her optic nerves. I'm thrilled to report that her optic nerves look great. I know of several hydro kiddos that have optic nerve issues, where the nerves are either thin or short because of the pressure hindering their developmental while these babies are in utero. Thanks be to God that Addie's are "normal". Her doctor feels she may be visually delayed but that she's catching up and has normal vision as well and doesn't need glasses. She ALSO doesn't think Addison has strabismus but that she has pseudostrabismus . Basically that her eyes aren't actually crossed but appear crossed often because of how broad her nose is and as she grows and her nose develops the appearance of her eyes crossing will change. Addison did not cross her eyes for the doctor, of course. She had just woken up for a nap, which I made sure to tell the doctor. An infant's vision is always best when they are well rested so I knew she needed to know that little tidbit. I had my camera with me, thankfully, and pulled it out to show the doctor what we had seen as crossed eyes. She pointed out the reflection of the flash in her eyes and that it's lined up, which indicates that the eyes are actually aligned. Good to know and you can believe I'll be watching for that in future pictures.
 |
| Waiting in the eye exam chair. |
As far as CVI goes, her ophthalmologist doesn't think she has it. I told her about the brain damage and evidence on her MRI and the warning that Dr. G gave us about the brain damage in her occipital lobe but she tracked well for Dr. R and scanned her face, etc. So I'm sitting there in the doctor's office holding her, and asking questions like.... so we just need to keep working on tracking exercises? And Dr. R. is like nope. I'm all but do we need to keep using lights and texture and ..... and..... and Dr. R is like patting me on the hand saying "She has NORMAL vision, normal structure and no muscle issues. You don't have to do anything." And I look at her and go "But I don't know how to handle not having homework!" And I laughed. It was such a WONDERFULLY new experience to not have to make a list of things we need to work on. I do realize that diagnoses can change and doctor's opinions can vary, so I'm not unaware that we may have some new vision labels at her six month follow up appointment but we CELEBRATE every piece of good news we get and try our best to live in the moment and that was a great moment.
We left her eye doctor and went by Torchy's to get my taco fix. It was a beautiful day outside, thankfully slightly overcast so we didn't have to worry about Addie's dilated eyes too much. She slept in her stroller while we sat on the patio and chowed down on tasty tasty shrimp tacos!
We were e a r l y (what?!) for Addie's nsg appointment and they were running.... get this..... ON time?! Double what?!! We were back in the office only 5 mins after her original appointment time. We saw a CNP first... and to be honest, I was a little taken aback by her line of questions. After asking her age, the first thing she asked was "So is she sitting up yet?"
Don't get me wrong, I KNOW Addison is doing amazing. I know that the amount of head control she has, her ability to get up on her arms while on tummy time, the fact that she's rolling over, that she's weight bearing on her legs and bouncing in her saucer already, the fact that she's soooo close to sitting up and isn't even six months old yet... well those things are all awe-inspiring really and not a day goes by I don't sit back in wonder as I watch her. I know that she is pretty freakin' awesome. But I also know what hydrocephalus can do. I know that sitting up by 6 months in a severe hydro kiddo is pretty unheard of. And if I know those things, I would assume the CNP would too.
So.... I was surprised that a medical professional that works in a pediatric neurosurgeon's office would ask such a sensitive milestone question like that. It gave me pause and made my heart ache, not for Addie who is not sitting up yet, but for all those other hydro moms and dads that are still waiting for the first smile, the first head lift off the ground during tummy time, the first laugh, the first step months past when their kiddos "should" be doing these things.
I looked at her and blinked my eyelashes a little and said... "Not yet. But she's doing amazing for a child that has a 2 yr old's head on a 12 month old size body. " (She weighed 20lbs 11ozs in all her clothes!!!!)
We saw Dr. G and as always LOVED him. He does want a scan done, just to maintain baseline scans. He said he is "happy" and "not concerned". Her head circ had jumped 2.6 cms in 3 months which is more than normal. But Addison's size is MORE than normal. Her soft spot is sunken and we know her eye exam showed this morning that her brain isn't under pressure so that contradicts the jump in head circumference being from pressure. But I'm glad to be getting a peak inside her little head. To be sure.
He was talking to Addie and told her "I don't think your mom likes me much." To which I replied "Her mom likes you very much, but she doesn't want to have to see you much." He joked about it hurting and that he's just the friendly neighborhood neurosurgeon that everyone's happy to see when they need him, and then poof, no one wants him around anymore when things are good. *chuckles*
As much as I do love him, and I do. Any person that performs life saving surgery on your child is gonna have a special place in your heart....always! But as much as I do love that man.... I'm hoping we don't have to see him til February...which is when her next follow up is scheduled, barring something wrong on her scans.
The MRI that he ordered is just a fact acquisition scan, so no sedation. THANKFULLY! And he wanted it done in the next two weeks. He blamed our 'jetsetting' ways for the reason he wanted the scan. Addison's second stem cell infusion is scheduled for December 6th. So excited about it. We are planning on meeting Adam's family over the weekend and another hydro family is scheduled for their daughter's second infusion the same day! It'll be our first hydro meet up! YAY!
Praying her scan shows lots of fluffy brain tissue and no issues so we can get those stem cells infused on schedule!!
Thursday, October 27, 2011
Some new experiences for Addison
I left Addison for the first extended amount of time on Friday the 21st so I could attend the SYTYCD concert with Carol as a birthday celebration. Carol and I had a great time. It was a much needed mommie night out! Addie did great with Aunt Missy and was sleeping peacefully when I returned FIVE hours later.
The next day, Melissa and I took Jack and Addie to the outlet mall in San Marcos as a continued celebration for my birthday weekend. Addison did wonderful. She loved her stroller and all the new sounds and environments. She stayed in her stroller for over three hours, happy as can be. She took a bottle once and dozed off for a while. Put her feet up on the cup holder, played with her butterfly hanging toy and even laughed out loud at her crazy mom a few times. It was a great day!! She was so well behaved that it allowed me to spend way too much money! ;)
Wednesday Addison had her first outdoor playdate at the local DQ playground. We met some friends of ours from Grayson's school and the boys played on the playground while Addie hung out with us moms. Interestingly, while we were outside there was a fire truck and ambulance that came screaming by. I watched Addie very closely to see how she would react to the noise, after our football game issue, and she was totally unphased. I was surprised really. I thought that it would be a similar type noise event as the bell tower and the band playing but she didn't seem to mind at all. Slept through it really. So who knows. It will be interesting to see what other types of noises set her off and what doesn't. Maybe the football game was just a perfect storm of stimulation and stranger awareness.
I got a video of Addie laughing today for Facebook. She is laughing and smiling more and more every day, though there are some days that she just isn't in the mood. I find her little moods pretty amusing. She definitely has her own mind.
We have a busy next couple of weeks (well months really) coming up. This weekend is our last home weekend for a while. Monday is Halloween. Addie will be going in her stroller, rocking her orange and black tutu and cheering on her brothers as they trick or treat.
Next Wednesday, the 2nd, we have a meeting with her PT and service coordinator to up her PT to twice monthly. Really working on her reaching and strenghtening her core to help her sit up.
Next Thursday afternoon, we're driving to Llano to watch Raychel cheer and then staying over night Thursday so hopefully I can attend Jacob's last game of the season while Mom watches Addie. Won't be attempting to take her to a noisey game again this year. (IF ever....)
The weekend following that is the Battle reunion which I'm looking forward to. I didn't go last year because I was soooo sick with morning sickness. So it's been since Elizabeth's (a cousin) wedding since I saw our extended extended family.... and I also look forward to an opportunity to show off Addison! Naturally I already have her outfit picked out!
Love this time of year! A cold front is rolling through as I type. So much to look forward to and be grateful for! Tis the season for thanksgiving afterall! But I really am trying to be thankful all day, every day and not just one day a year.
Happy Fall everyone!
~ Aimee
The next day, Melissa and I took Jack and Addie to the outlet mall in San Marcos as a continued celebration for my birthday weekend. Addison did wonderful. She loved her stroller and all the new sounds and environments. She stayed in her stroller for over three hours, happy as can be. She took a bottle once and dozed off for a while. Put her feet up on the cup holder, played with her butterfly hanging toy and even laughed out loud at her crazy mom a few times. It was a great day!! She was so well behaved that it allowed me to spend way too much money! ;)
Wednesday Addison had her first outdoor playdate at the local DQ playground. We met some friends of ours from Grayson's school and the boys played on the playground while Addie hung out with us moms. Interestingly, while we were outside there was a fire truck and ambulance that came screaming by. I watched Addie very closely to see how she would react to the noise, after our football game issue, and she was totally unphased. I was surprised really. I thought that it would be a similar type noise event as the bell tower and the band playing but she didn't seem to mind at all. Slept through it really. So who knows. It will be interesting to see what other types of noises set her off and what doesn't. Maybe the football game was just a perfect storm of stimulation and stranger awareness.
I got a video of Addie laughing today for Facebook. She is laughing and smiling more and more every day, though there are some days that she just isn't in the mood. I find her little moods pretty amusing. She definitely has her own mind.
We have a busy next couple of weeks (well months really) coming up. This weekend is our last home weekend for a while. Monday is Halloween. Addie will be going in her stroller, rocking her orange and black tutu and cheering on her brothers as they trick or treat.
Next Wednesday, the 2nd, we have a meeting with her PT and service coordinator to up her PT to twice monthly. Really working on her reaching and strenghtening her core to help her sit up.
Next Thursday afternoon, we're driving to Llano to watch Raychel cheer and then staying over night Thursday so hopefully I can attend Jacob's last game of the season while Mom watches Addie. Won't be attempting to take her to a noisey game again this year. (IF ever....)
The weekend following that is the Battle reunion which I'm looking forward to. I didn't go last year because I was soooo sick with morning sickness. So it's been since Elizabeth's (a cousin) wedding since I saw our extended extended family.... and I also look forward to an opportunity to show off Addison! Naturally I already have her outfit picked out!
Love this time of year! A cold front is rolling through as I type. So much to look forward to and be grateful for! Tis the season for thanksgiving afterall! But I really am trying to be thankful all day, every day and not just one day a year.
Happy Fall everyone!
~ Aimee
Thursday, October 20, 2011
Wednesday, October 19, 2011
4 month well baby appointment
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| Taking a few weeks ago... She's smiles much easier now! |
Addie had her four month well baby appointment today and it went great! She weighed 18 lbs 9 ozs and is 26 and 1/2 inches long. She's grown 2 inches and gained 2 and half pounds since her last well baby on August 31st. Her head circumference has gone up 2 cms in 6 wks but Dr. N isn't concerned because she's growing at a faster pace overall. We just make big kids. She is going to forward her measurements to Dr. G (our nsg) just to make sure he doesn't want to see her sooner than her next appointment with him on November 14th.
She said that Addie is developmentally a 3-4 month old. Really good news to hear! For her to only be behind, in EVERY milestone, including the physical ones, by a month is AWESOME news. Dr. N was thrilled with Addie's head control. Addie showed off, picking her head up to a 90 degree angle when on her tummy and she even pushed up on her elbows for her. Dr. N squealed... and Dr. N doesn't squeal. So it was a proud momma moment for me, for sure!
Dr. N is pleased with Addison's improvement in her vision, but she is still visually delayed so I'm glad we're going to the opthamologist next month to get that road started.
I spoke to Dr. N about starting Addie on foods and she feels that she does have good enough head control to start. So we're going to start her on rice cereal in about two weeks and then veggies in about four weeks. I'm excited to see Addie start foods. I know a lot of hydro kiddos have sensory issues and food issues, so it will be interesting to see if Addison's love of nursing carries over to a love of solids.
We are a very busy household and I'm loving every minute of it. It's difficult to juggle everything but there's never a dull moment and the house is often filled with laughter. Even Addie's laughter has joined in. Sweetest sound ever. It's hard not to get misty everytime she laughs. Mom got her to laugh the first time, right after she turned 4 months old. I caught the tail end of it as I was in the other room getting dressed! Stinker. But thankfully I have had many encore performances from her. So thankful.
Monday, October 10, 2011
Frightening Friday Night
We had been planning for about a month now to take the kids and go see Jacob play football on October 7th. His first district game was in a town very close to our house so that seemed like the best game to attempt.
I had Addie an adorable black and orange tutu to wear, their school colors, and we were all set. We arrived about 15 mins before the game started and were in time for the run through and welcoming of the boys on the field. Addie was doing great! She was smiling at Maurie and seemed happy to be out of the house.
Raychel got back from standing beside the run through and went to pick up Addie out of her carrier. I was helping to unfasten her straps and stuff and as Raychel was lifting her out of the carrier, Addison started to scream. Raychel tried to walk around with her to calm her and it didn't work, so Melissa tried. Took her far down the side of the field, away from the stands and band and I could see Addie was still fussing. I walked down to see if I could help and she would settle and then scream, settle and then scream. I took Addie out to the car to try to get her away from the noise and try to nurse her. She wouldn't latch. She'd scream and try to nurse and then scream some more. At this point, after trying for what may have been a total of two minutes, I texted Maurie to have Melissa bring all my stuff and the boys. We were heading toward home with the very real possibility of detouring to the Children's Hospital along the way. The town we were in was probably 45 mins to Children's and we had to head towards home to get to the hospital anyway.
Thankfully Melissa decided to come with us and offered to drive. I was able to sit in the backseat with Addie and try to calm her down. I did a no no and got her out of her carseat and held her and rubbed her back and talked to her in a soft voice. I told myself that if she was still crying when we got to the other side of Hutto (where we had to decide home or hospital) that we were heading straight to Dell Children's ER.
About five miles down the road, Addie started to settle. I wish I knew how to describe the way she was screaming. As a mom of three, screaming babies aren't a new thing to me. But the way Addie was screaming was different. It was a scared scream, an in pain scream, a why did you do this to me scream. I was scared that it meant something was wrong with her shunt. As a hydro parent, you can never dismiss the possibility of a neurological issue. I knew her soft spot wasn't bulging, I knew her eyes weren't sunsetting, I knew she wasn't vomitting. All classic signs of a shunt failure. I knew Dr. G (her nsg) told me that shunt failures typically don't go fast like that. They are slow to build. They are gradual and rarely emergent. But I do know they can be emergent. And I was trying to figure out if that was what was going on. I knew the decision would be mine. So I decided that she had until we got toward home to stop screaming.
I was very thankful that she quieted. She snuggled in to me and looked around in the dark. She didn't pass out or fall asleep which was oddly comforting to me as well. She didn't stop screaming out of exhaustion, she stopped because she was comforted,or at least out of pain for the time being. When we got her home, she acted as if nothing had happened. She was alert, cooing, looking around, trying to sit up. All typical Addie behavior.
The best thing I can figure out was it was noise related. The band had just settled into the stands and started playing. The stands were metal and I'm sure there were a ton of vibrations. She started crying right as she was picked up by a "stranger" (sorry Raychel!) and was taking out of the buffer of her carrier seat. I think it was just too much all at once for her.
She did act similarly to this when we were on the Duke campus and the bell tower started chiming. Not to this extent but you could tell the loud noise wasn't pleasing to her ears.
Friday night was just another reminder how quickly things can change in the life of a hydro child. I was very thankful we didn't end up at the ER and I'm very thankful this was the first time it was a real consideration. Realistically I realize we will have to go to the ER at some point in her life. I'm just thankful we haven't had to yet.
I had Addie an adorable black and orange tutu to wear, their school colors, and we were all set. We arrived about 15 mins before the game started and were in time for the run through and welcoming of the boys on the field. Addie was doing great! She was smiling at Maurie and seemed happy to be out of the house.
Thankfully Melissa decided to come with us and offered to drive. I was able to sit in the backseat with Addie and try to calm her down. I did a no no and got her out of her carseat and held her and rubbed her back and talked to her in a soft voice. I told myself that if she was still crying when we got to the other side of Hutto (where we had to decide home or hospital) that we were heading straight to Dell Children's ER.
About five miles down the road, Addie started to settle. I wish I knew how to describe the way she was screaming. As a mom of three, screaming babies aren't a new thing to me. But the way Addie was screaming was different. It was a scared scream, an in pain scream, a why did you do this to me scream. I was scared that it meant something was wrong with her shunt. As a hydro parent, you can never dismiss the possibility of a neurological issue. I knew her soft spot wasn't bulging, I knew her eyes weren't sunsetting, I knew she wasn't vomitting. All classic signs of a shunt failure. I knew Dr. G (her nsg) told me that shunt failures typically don't go fast like that. They are slow to build. They are gradual and rarely emergent. But I do know they can be emergent. And I was trying to figure out if that was what was going on. I knew the decision would be mine. So I decided that she had until we got toward home to stop screaming.
I was very thankful that she quieted. She snuggled in to me and looked around in the dark. She didn't pass out or fall asleep which was oddly comforting to me as well. She didn't stop screaming out of exhaustion, she stopped because she was comforted,or at least out of pain for the time being. When we got her home, she acted as if nothing had happened. She was alert, cooing, looking around, trying to sit up. All typical Addie behavior.
The best thing I can figure out was it was noise related. The band had just settled into the stands and started playing. The stands were metal and I'm sure there were a ton of vibrations. She started crying right as she was picked up by a "stranger" (sorry Raychel!) and was taking out of the buffer of her carrier seat. I think it was just too much all at once for her.
She did act similarly to this when we were on the Duke campus and the bell tower started chiming. Not to this extent but you could tell the loud noise wasn't pleasing to her ears.
Friday night was just another reminder how quickly things can change in the life of a hydro child. I was very thankful we didn't end up at the ER and I'm very thankful this was the first time it was a real consideration. Realistically I realize we will have to go to the ER at some point in her life. I'm just thankful we haven't had to yet.
Tuesday, September 20, 2011
Monday, September 5, 2011
Addison's 2 mth well baby... A month late and another week in review
Addie finally saw her pediatrician last week. Because of her NICU stay at a different hospital than I normally deliver at, and a freak accident that our pedi's husband had that kept her out of the office for Addie's two week follow up, we had only passed her in the hallway at Addie's nurse visit for the second part of her newborn screening up til now.
I'm happy to post that Addie's pediatrician is very pleased with Addison. Said her tone looked great. The fact that her hands are already opening and aren't still clenched into fists is a very good thing. She's bright eyed which is encouraging for her vision delay. Dr. N said that Addie is delayed overall but she would still put her on the normal developmental spectrum as of now. Which is wonderful news! Praise God! We know this can change, for a variety of different reasons, but we take good news anytime we can get it!
Addison is being referred to a pediatric opthamologist but there was no rush on getting her in. Her appointment is November 14th, the same day as her next neurosurg appointment. Thankfully, Adam will be able to take off that day, and D will be able to pick up Grayson and we can get it all taken care of in one day. Hopefully! Praying the two doctors appointments don't result in follow up testing, such as an MRI.
Addison is doing well. She did have three shots at her well baby and seemed a little less like herself for a few days but thankfully no fever! When she's tired and not feeling well, I can really see her struggling with her vision. So I know it's taking effort to get everything working together. BUT when she's rested and feeling better, she's so much more alert! It's wonderful. I'm learning to cherish those moments that we make eye contact. She can do it. We know she can see. It's just a matter of how much she can see.
We also had her PT eval last week. She'll be starting physical therapy once a month for now, and then we'll most likely have to increase the frequency as there are more physical milestones she should be reaching. Our new goal is rolling from back to side and from side to back. Something Addison shows little interest in. But we're working on it! Tummy time is going well. She's really starting to get some clearance when she lifts her head. And her head control while upright or on my chest is getting much stronger. One day at a time!
Grayson is doing well in school. Homework has begun in full force and I'm fully appreciating the required balancing act that is being a mother of three. So far, so good. But many a night I was counting down the minutes til 9pm so I could crawl into a hot bubble bath!
Grayson starts swim team practice this week. He's in the Swim 101 developmental class for kids that are interested in swim team but don't have the skill set to compete yet. He will go two days a week for 30 mins.
Jackson had his first speech class this week and loved it. His teacher said he was a sponge! Which is great to hear. And his vocabulary has really taken off from when they did his first assessment last year.
Melissa, with a small amount of my help, pulled up the carpet in our master bedroom this weekend. We have plans to put down wood floors in there. Melissa and I are going to attempt to do this ourselves over Thanksgiving break! This will be our test run, conquering the master bedroom first. If we can figure out how to do it ourselves, without totally screwing it up, it will save quite a bit of money. Enough money to equalize the cost of wood v. carpet for the rest of the house! I'm so excited!! Melissa and I also went couch shopping. Addison and Jackson both love to go! They enjoyed it as well. No purchases were made but some brands were eliminated from the hunt!
Currently, in our area, there are some massive wild fires. It's so sad. Nearly 350 homes have been destroyed in a neighboring suburb of Austin. Saying prayers for everyone affected by the fires. We need rain desperately. Thankfully we've had a small cold front come through today. The lows in the mornings should be down in the 60s this week. I cannot express how excited I am to walk Grayson to the bus stop in the morning and feel that first touch of fall in the air! I am so ready for Fall!! My favorite season, hands down!
Football has already started! Makes for a happy Chapman crew! Melissa and I listened to the UT game on the radio Saturday. NFL opener is this upcoming Thursday. Adam and I are playing Fantasy football again this year. I feel like I missed out on most of football last year because of how rotten I was feeling with morning sickness. So I'm excited to be feeling ready for some football this year!
Our anniversary is coming up soon. We already have a sitter lined up (thanks Aunt Missy!) for a long over due date night. I think we're both looking forward to it!
This upcoming week, Mom and Dad are coming in for several doctors appointments in Austin. Mom's going to be able to go with me on Thursday to have Addison's 3 month portraits done. I've had quite (a bit too much) fun shopping for picture outfits. In the process, I have discovered my love for baby Gap. I would post a link to the dresses I found for her, but they weren't available online. One of the dresses may have to wait for her six month pictures, so there will be pictures of it soon enough.
I'm happy to post that Addie's pediatrician is very pleased with Addison. Said her tone looked great. The fact that her hands are already opening and aren't still clenched into fists is a very good thing. She's bright eyed which is encouraging for her vision delay. Dr. N said that Addie is delayed overall but she would still put her on the normal developmental spectrum as of now. Which is wonderful news! Praise God! We know this can change, for a variety of different reasons, but we take good news anytime we can get it!
Addison is being referred to a pediatric opthamologist but there was no rush on getting her in. Her appointment is November 14th, the same day as her next neurosurg appointment. Thankfully, Adam will be able to take off that day, and D will be able to pick up Grayson and we can get it all taken care of in one day. Hopefully! Praying the two doctors appointments don't result in follow up testing, such as an MRI.
Addison is doing well. She did have three shots at her well baby and seemed a little less like herself for a few days but thankfully no fever! When she's tired and not feeling well, I can really see her struggling with her vision. So I know it's taking effort to get everything working together. BUT when she's rested and feeling better, she's so much more alert! It's wonderful. I'm learning to cherish those moments that we make eye contact. She can do it. We know she can see. It's just a matter of how much she can see.
We also had her PT eval last week. She'll be starting physical therapy once a month for now, and then we'll most likely have to increase the frequency as there are more physical milestones she should be reaching. Our new goal is rolling from back to side and from side to back. Something Addison shows little interest in. But we're working on it! Tummy time is going well. She's really starting to get some clearance when she lifts her head. And her head control while upright or on my chest is getting much stronger. One day at a time!
Grayson is doing well in school. Homework has begun in full force and I'm fully appreciating the required balancing act that is being a mother of three. So far, so good. But many a night I was counting down the minutes til 9pm so I could crawl into a hot bubble bath!
Grayson starts swim team practice this week. He's in the Swim 101 developmental class for kids that are interested in swim team but don't have the skill set to compete yet. He will go two days a week for 30 mins.
Jackson had his first speech class this week and loved it. His teacher said he was a sponge! Which is great to hear. And his vocabulary has really taken off from when they did his first assessment last year.
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| First day of 'school' for Jack! |
Melissa, with a small amount of my help, pulled up the carpet in our master bedroom this weekend. We have plans to put down wood floors in there. Melissa and I are going to attempt to do this ourselves over Thanksgiving break! This will be our test run, conquering the master bedroom first. If we can figure out how to do it ourselves, without totally screwing it up, it will save quite a bit of money. Enough money to equalize the cost of wood v. carpet for the rest of the house! I'm so excited!! Melissa and I also went couch shopping. Addison and Jackson both love to go! They enjoyed it as well. No purchases were made but some brands were eliminated from the hunt!
Currently, in our area, there are some massive wild fires. It's so sad. Nearly 350 homes have been destroyed in a neighboring suburb of Austin. Saying prayers for everyone affected by the fires. We need rain desperately. Thankfully we've had a small cold front come through today. The lows in the mornings should be down in the 60s this week. I cannot express how excited I am to walk Grayson to the bus stop in the morning and feel that first touch of fall in the air! I am so ready for Fall!! My favorite season, hands down!
Football has already started! Makes for a happy Chapman crew! Melissa and I listened to the UT game on the radio Saturday. NFL opener is this upcoming Thursday. Adam and I are playing Fantasy football again this year. I feel like I missed out on most of football last year because of how rotten I was feeling with morning sickness. So I'm excited to be feeling ready for some football this year!
Our anniversary is coming up soon. We already have a sitter lined up (thanks Aunt Missy!) for a long over due date night. I think we're both looking forward to it!
This upcoming week, Mom and Dad are coming in for several doctors appointments in Austin. Mom's going to be able to go with me on Thursday to have Addison's 3 month portraits done. I've had quite (a bit too much) fun shopping for picture outfits. In the process, I have discovered my love for baby Gap. I would post a link to the dresses I found for her, but they weren't available online. One of the dresses may have to wait for her six month pictures, so there will be pictures of it soon enough.
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| Addison is getting so BIG! In a 6-9 month outfit, taken this morning! |
Saturday, August 27, 2011
Another week or so in review...
It's been another busy few days in the Chapman household.
We returned from Duke and enjoyed our last few days of summer vacation. We had a few family movie nights. Grayson, Jackson, Addison and I had a play date at one of Grayson's classmates house.
We got Grayson registered for swim team. He had his meet the teacher night and Adam kept Addison and Jackson so I could take him.
The first day of third grade was upon us before we knew it, officially bringing an end to a very eventful and memorable summer. I, for one, was excited for a new beginning, a fresh start, a routine!
From the looks of it, Grayson was a little bit excited, too. Though he would probably deny that. He was laughing at me in this picture, saying I was Sarah, his step-mom, because I was taking so many pictures!
Adam arranged to go into work late that day so I could walk Grayson in to his classroom, without having to take Jack and Addie with me. Trying to keep Addie out of huge public places as often as possible, especially where there's a lot of kids.
Grayson, so far *knock on wood* is loving third grade. He loves his teacher and I love her level of communication and organization. Praying that it continues!
Jackson had his speech eval and starts speech again next week. They were very pleased with his increase in utterances (i.e. he talks all the time now and never hushes) but he still has several areas of articulation to work on. He's excited to go back to school like bubba.
Jack went with me to pick up Grayson in parent loop on the first day of school. He was in the backseat with Addie and she got fussy. I asked him if he would help feed her a bottle, since I couldn't get out from behind the wheel while we were in parent loop. Jackson informed me that Addie didn't want a bottle, but she wanted a boob. *sigh* Anything to get out of having to hold a bottle for his sister. After I explained that I couldn't get out of the car, he tried again to get out of it by saying...but Mom we don't have a microwave. *sigh again* I explained it was hot enough outside we didn't need to warm the bottle! That little stinker.
Addison has had several therapy sessions and we're working on head control as much as we can. She's getting better and better every day. Her smiles are unpredictable but a beautiful sight to behold when she decides to flash those toothless gums.
Adam and I started Weight Watchers again this week. First goal - 30 lbs gone!! I'm excited. Hoping the motivation stays around. Lord knows I need all the energy I can get keeping up with this crew.
Next week is going to be yet another jam packed week. She has therapy and her 2 mth well baby (that we had to re-schedule because of her shunt revision surgery). Jackson starts speech on Tuesday. Grayson will have homework this week... so the bubble may pop.
Thankfully, Adam has off tomorrow and Monday. Our fantasy football draft is tomorrow. I'm so excited for the start of football season and for fall. My favorite time of year, and I always look forward to it. But this year is especially exciting. I can't wait for it to cool off! We've had 70 days 0f 100+ temperatures. And no RAIN. I miss the rain.
As I'm writing this, I'm watching news coverage on Hurricane Irene. I don't miss that kind of rain. But a few inches would be nice.
So excited for what the next few months have to bring. Learning to live one day at a time and be thankful for each day that Addison's shunt is working. Each day that Grayson has a good day at school. Each day that we get to spend time as a family. Each day that we have air conditioning. :) It's the little things, along with the big things, that make me so very thankful. So blessed.
We returned from Duke and enjoyed our last few days of summer vacation. We had a few family movie nights. Grayson, Jackson, Addison and I had a play date at one of Grayson's classmates house.
We got Grayson registered for swim team. He had his meet the teacher night and Adam kept Addison and Jackson so I could take him.
The first day of third grade was upon us before we knew it, officially bringing an end to a very eventful and memorable summer. I, for one, was excited for a new beginning, a fresh start, a routine!
From the looks of it, Grayson was a little bit excited, too. Though he would probably deny that. He was laughing at me in this picture, saying I was Sarah, his step-mom, because I was taking so many pictures!
Adam arranged to go into work late that day so I could walk Grayson in to his classroom, without having to take Jack and Addie with me. Trying to keep Addie out of huge public places as often as possible, especially where there's a lot of kids.
Grayson, so far *knock on wood* is loving third grade. He loves his teacher and I love her level of communication and organization. Praying that it continues!
Jackson had his speech eval and starts speech again next week. They were very pleased with his increase in utterances (i.e. he talks all the time now and never hushes) but he still has several areas of articulation to work on. He's excited to go back to school like bubba.
Jack went with me to pick up Grayson in parent loop on the first day of school. He was in the backseat with Addie and she got fussy. I asked him if he would help feed her a bottle, since I couldn't get out from behind the wheel while we were in parent loop. Jackson informed me that Addie didn't want a bottle, but she wanted a boob. *sigh* Anything to get out of having to hold a bottle for his sister. After I explained that I couldn't get out of the car, he tried again to get out of it by saying...but Mom we don't have a microwave. *sigh again* I explained it was hot enough outside we didn't need to warm the bottle! That little stinker.
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| I was trying to capture a picture of her lifting her head up and this is the expression I caught! Love it! It's like she's saying "Do we really have to do this again?!" |
Addison has had several therapy sessions and we're working on head control as much as we can. She's getting better and better every day. Her smiles are unpredictable but a beautiful sight to behold when she decides to flash those toothless gums.
Adam and I started Weight Watchers again this week. First goal - 30 lbs gone!! I'm excited. Hoping the motivation stays around. Lord knows I need all the energy I can get keeping up with this crew.
Next week is going to be yet another jam packed week. She has therapy and her 2 mth well baby (that we had to re-schedule because of her shunt revision surgery). Jackson starts speech on Tuesday. Grayson will have homework this week... so the bubble may pop.
Thankfully, Adam has off tomorrow and Monday. Our fantasy football draft is tomorrow. I'm so excited for the start of football season and for fall. My favorite time of year, and I always look forward to it. But this year is especially exciting. I can't wait for it to cool off! We've had 70 days 0f 100+ temperatures. And no RAIN. I miss the rain.
As I'm writing this, I'm watching news coverage on Hurricane Irene. I don't miss that kind of rain. But a few inches would be nice.
So excited for what the next few months have to bring. Learning to live one day at a time and be thankful for each day that Addison's shunt is working. Each day that Grayson has a good day at school. Each day that we get to spend time as a family. Each day that we have air conditioning. :) It's the little things, along with the big things, that make me so very thankful. So blessed.
Stem Cell Trip
Adam, Addie and I traveled to Raleigh Durham on August 13th. We were originally supposed to go in July but because of Addie's shunt revision surgery it got postponed. Thankfully, because it got pushed to August, Adam was able to take a weeks vacation instead of us trying to fit it all in 3 days. This turned out to be a very, very good thing. We were able to take it slow and enjoy our mini vakay instead of stressing out and rushing.
Some kiddos with hydro I've read have issues with the changes in cabin pressure. Addison seemed to be unaffected. She does, however, have butt bomb radar when it comes to getting on an airplane. BOTH times before we boarded the plane she had a blow out. On the way to Raleigh, I noticed it like 5 minutes before we boarded and had to take her and RUN to the bathroom, change her and her outfit and run back. We flew Southwest and had to get three seats together, so boarding on time was crucial. I made it back, barely.
We had a layover in Nashville both there and back and we enjoyed the break in time on the flights. The flights are pretty easy though. An hour and half and then less than an hour. So a nice way to break it up. When we fly back for her next infusion, I'm going to do my best to have our layovers in Nashville again for that reason. One of the connection options is Phoenix. Um Hello???
We stayed at a hotel near the airport and really enjoyed our time in Raleigh. The temperature was 20 degrees cooler than in Texas and everything was so green and lush. Trees everywhere. We took advantage of our extra time and explored the area. Ate at a Longhorn Steakhouse for lunch, somewhere we frequented often when Adam lived in Jacksonville and we were dating long distance.
Monday we ate at a local seafood restaurant Adam had found on Yelp! and then walked around the farmer's market. I bought some green peanuts and Adam got some apple butter to take back home. We decided to head on to Duke University to explore the campus, knowing we'd be too tired after our hospital visit Tuesday to truly enjoy it. The chapel on campus is stunning. I took a million pictures, both inside and out, but they do not do it justice.
Bored already.
We were there right at 5:00pm when the bell tower went off. It played for 15 minute and was a very cool experience. Addie, however, seemed to not like the noise at all.
We went back to the hotel, ordered some delivery and gave Addie a bath. She loves the water!
We were at Duke Children's Health Center all day Tuesday.
Addie had to be quarantined because of her TB exposure in the NICU, but other than that everything went smoothly. They only had to stick her twice to get her IV started. Her stem cells went in around 1pm. She loved Trey, the music therapist who came to play guitar and sing to her while they were getting the IV started. Course as soon as they poked her, the music held no appeal.
Thankfully, that was the worst part - the needle poke. She fell asleep shortly after the infusion began, exhausted from all the crying.
We were released around 5pm. On a funny side note, Jeff Foxworthy was outside of our hospital room doing interviews for a Children's Miracle Network commercial.
We left Duke, went by the gift shop to pick up some t-shirts for the kids, and then went back to our hotel to pack up and get ready to go home.
We had a safe flight home. Addie smiled several times for me on the way home. Praying those stem cells do their job and fix any areas that are damaged in her little brain.
She's supposed to have another infusion when she's six months old. We are waiting to see if insurance covers the infusion or not. If it does, we'll go back right at her six month birthday to get another infusion in this calendar year, when she's already met her deductible and max out of pocket. We're looking forward to seeing Raleigh Durham in the Fall. We'll probably take four days again and take it leisurely, though we are talking about taking Jack with us this time and leaving Grayson in school, with his Dad. We can fly Jack and lap baby Addie for the same number of ticket purchases. Excited to see where Addie will be developmentally in three more months!!
I'm happy to report that Addie is a fantastic flier.
Some kiddos with hydro I've read have issues with the changes in cabin pressure. Addison seemed to be unaffected. She does, however, have butt bomb radar when it comes to getting on an airplane. BOTH times before we boarded the plane she had a blow out. On the way to Raleigh, I noticed it like 5 minutes before we boarded and had to take her and RUN to the bathroom, change her and her outfit and run back. We flew Southwest and had to get three seats together, so boarding on time was crucial. I made it back, barely.
We had a layover in Nashville both there and back and we enjoyed the break in time on the flights. The flights are pretty easy though. An hour and half and then less than an hour. So a nice way to break it up. When we fly back for her next infusion, I'm going to do my best to have our layovers in Nashville again for that reason. One of the connection options is Phoenix. Um Hello???
We stayed at a hotel near the airport and really enjoyed our time in Raleigh. The temperature was 20 degrees cooler than in Texas and everything was so green and lush. Trees everywhere. We took advantage of our extra time and explored the area. Ate at a Longhorn Steakhouse for lunch, somewhere we frequented often when Adam lived in Jacksonville and we were dating long distance.
Monday we ate at a local seafood restaurant Adam had found on Yelp! and then walked around the farmer's market. I bought some green peanuts and Adam got some apple butter to take back home. We decided to head on to Duke University to explore the campus, knowing we'd be too tired after our hospital visit Tuesday to truly enjoy it. The chapel on campus is stunning. I took a million pictures, both inside and out, but they do not do it justice.
Bored already.
We were there right at 5:00pm when the bell tower went off. It played for 15 minute and was a very cool experience. Addie, however, seemed to not like the noise at all.
We went back to the hotel, ordered some delivery and gave Addie a bath. She loves the water!
We were at Duke Children's Health Center all day Tuesday.
Walking into the McGovern-Davis Children's Health Center at Duke
Addie's favorite toy, Minnie!
Addie had to be quarantined because of her TB exposure in the NICU, but other than that everything went smoothly. They only had to stick her twice to get her IV started. Her stem cells went in around 1pm. She loved Trey, the music therapist who came to play guitar and sing to her while they were getting the IV started. Course as soon as they poked her, the music held no appeal.
Transfixed by Trey!
Stem cells are going in!!! Dr. Kurtzberg, Addie and I
Good to the last drop!
We were released around 5pm. On a funny side note, Jeff Foxworthy was outside of our hospital room doing interviews for a Children's Miracle Network commercial.
Jeff Foxworthy in the green shirt.
We left Duke, went by the gift shop to pick up some t-shirts for the kids, and then went back to our hotel to pack up and get ready to go home.
We had a safe flight home. Addie smiled several times for me on the way home. Praying those stem cells do their job and fix any areas that are damaged in her little brain.
Addie slept the whole way home.
She's supposed to have another infusion when she's six months old. We are waiting to see if insurance covers the infusion or not. If it does, we'll go back right at her six month birthday to get another infusion in this calendar year, when she's already met her deductible and max out of pocket. We're looking forward to seeing Raleigh Durham in the Fall. We'll probably take four days again and take it leisurely, though we are talking about taking Jack with us this time and leaving Grayson in school, with his Dad. We can fly Jack and lap baby Addie for the same number of ticket purchases. Excited to see where Addie will be developmentally in three more months!!
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