This last month has truly been a test of my faith. This song is so beautiful and is fitting for any mother/father. It is incredibly powerful to me right now considering the trials that I am going through. The lyrics follow.
Plumb - In My Arms
Your baby blues
So full of wonder
Your Curly Que's
Your contagious smile
And as I watch
You start to grow up
All I can do is hold you tight
Knowing
Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms
Story books
Are full of fairy-tales
Of kings and queens
And the bluest skies
My heart is torn just in knowing
You'll someday see
The truth from lies
When the
Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms
Castles they might crumble
Dreams may not come true
Cause you are never all alone
Cause I will always
Always love you
Hey I
Hey I
When the
Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms
In my arms
Saturday, July 12, 2008
Sometimes...In my life
when it rains it pours.
When Aja's diagnosis came through, I didn't do my typical "why me" thing that I usually do when something difficult comes my way. Sure, I had my moments where I broke down, but as I have educated myself and we have gotten Aja the help she needs, I feel more confident in my and her abilities to react appropriately when the time comes.
Now, I'm not so sure. This might be a little pre-mature, and I hope it really is nothing, but the Lord may have blessed us with 2 special needs kids.
Cohen, our non-talker, has now qualified for Early Intervention through the state because he is showing signs of Autism. As some of you may know he doesn't talk. He says like 4 words. Each of these words has not gotten clearer as time has gone on. So, when the evaluator came for Aja I asked her if they would send one out for Cohen, and they did. Basically she did a test with him and then asked us a bunch of questions about Cohen's behavior. When she tallied up the final "score" he basically score 0-3 months on everything with scattered skills up to 18 months. I think there was 1 thing that he showed scattered skills up to his age (27 months), but the majority was only 18 months.
I have had a lot of family members tell me that they don't think he is autistic because of how he acts around them, but the thing is is that there is such a wide array of autistic "symptoms" that there is nothing that is "classic" to diagnose the condition. That is why it's called autism spectrum disorder. Cohen's "symptoms" are: He doesn't talk (he did for awhile and then around 18 months stopped completely), he doesn't interact with children or engage in play, he doesn't really interact with Mitch and I (he's usually off by himself and if I try to engage him he shows minimal interest and then goes back to doing his own thing), loves videos (weird I know because what kid doesn't like videos! I'm going to have to ask the nurse more on this one so she can explain it better to me), short attention span, no fear of strangers and acts indifferent when a stranger comes to the house (meaning he doesn't want to show off or engage with them (isn't curious)). There are many more things that he does that have caused my "red flags" to go up.
Anyway, we will be having a lot of evaluators coming into the house and then we will see a Developmental Pediatrician that specializes in developmental disorders and can give him an "official" diagnosis. I'm praying I'm wrong...I really am. For the longest time we have just told ourselves that Cohen is stubborn and that it will happen eventually, but the other things that he exhibits have caused me to question that statement. We should know sometime at the beginning of August when I can get him into the pediatrician.
Right now I feel like hitting my head against a wall. Why?? This beautiful little boy of mine won't/can't communicate with me and it's so frustrating and heart breaking. I so looked forward to hearing his little voice as he got older. Anyway, I will write more on this as we have the evaluators come in. I'm in a dark place right now and just struggling to put on a happy face.
When Aja's diagnosis came through, I didn't do my typical "why me" thing that I usually do when something difficult comes my way. Sure, I had my moments where I broke down, but as I have educated myself and we have gotten Aja the help she needs, I feel more confident in my and her abilities to react appropriately when the time comes.
Now, I'm not so sure. This might be a little pre-mature, and I hope it really is nothing, but the Lord may have blessed us with 2 special needs kids.
Cohen, our non-talker, has now qualified for Early Intervention through the state because he is showing signs of Autism. As some of you may know he doesn't talk. He says like 4 words. Each of these words has not gotten clearer as time has gone on. So, when the evaluator came for Aja I asked her if they would send one out for Cohen, and they did. Basically she did a test with him and then asked us a bunch of questions about Cohen's behavior. When she tallied up the final "score" he basically score 0-3 months on everything with scattered skills up to 18 months. I think there was 1 thing that he showed scattered skills up to his age (27 months), but the majority was only 18 months.
I have had a lot of family members tell me that they don't think he is autistic because of how he acts around them, but the thing is is that there is such a wide array of autistic "symptoms" that there is nothing that is "classic" to diagnose the condition. That is why it's called autism spectrum disorder. Cohen's "symptoms" are: He doesn't talk (he did for awhile and then around 18 months stopped completely), he doesn't interact with children or engage in play, he doesn't really interact with Mitch and I (he's usually off by himself and if I try to engage him he shows minimal interest and then goes back to doing his own thing), loves videos (weird I know because what kid doesn't like videos! I'm going to have to ask the nurse more on this one so she can explain it better to me), short attention span, no fear of strangers and acts indifferent when a stranger comes to the house (meaning he doesn't want to show off or engage with them (isn't curious)). There are many more things that he does that have caused my "red flags" to go up.
Anyway, we will be having a lot of evaluators coming into the house and then we will see a Developmental Pediatrician that specializes in developmental disorders and can give him an "official" diagnosis. I'm praying I'm wrong...I really am. For the longest time we have just told ourselves that Cohen is stubborn and that it will happen eventually, but the other things that he exhibits have caused me to question that statement. We should know sometime at the beginning of August when I can get him into the pediatrician.
Right now I feel like hitting my head against a wall. Why?? This beautiful little boy of mine won't/can't communicate with me and it's so frustrating and heart breaking. I so looked forward to hearing his little voice as he got older. Anyway, I will write more on this as we have the evaluators come in. I'm in a dark place right now and just struggling to put on a happy face.
Wednesday, July 9, 2008
Aja is 1 month old!!!
Here are some pictures of Aja who turned 1 month on the 7th! Thank you Tasha for the cutie outfits she looks darling in them!
I can scream really loud. (I really don't mind becuase this means she is doing well!!)
I love my daddy!
I sleep pretty darn good.
I'm so cute!!
More cuteness!!
Baby Burrito!! (her occupational therapist recommends we keep swaddling her to help with her sleep issues. It works!)
The End.
I can scream really loud. (I really don't mind becuase this means she is doing well!!)
I love my daddy!
I sleep pretty darn good.
I'm so cute!!
More cuteness!!
Baby Burrito!! (her occupational therapist recommends we keep swaddling her to help with her sleep issues. It works!)
The End.
How SuperMan Sleeps
Cohen likes to fall asleep in some pretty funky outfits and positions!
And another...
I have a housefull of super heroes!! (p.s. like my sock basket LOL!)
And another...
I have a housefull of super heroes!! (p.s. like my sock basket LOL!)
Kid Tag!
I got tagged by Tasha (sorry it has taken awhile) and decided to ask Peyton the questions here are his answers:
1. What is something mom always says to you? Be nice and to eat.
2. What makes mom happy? When I'm good.
3. What makes mom sad? When I don't eat.
4. How does mom make you laugh? Tickling us
5. What was mom like as a child? I don't know
6. How old is your mom? 27 (wow I'm impressed he remembered!)
7. How tall is your mom? 30 points
8. What is her favorite thing to do? Play on the computer, tickle kids and make them laugh
9. What does your mom do when you're not around? Sleeps
10. If your mom becomes famous, what will it be for? Money so we can buy and RV
11. What is your mom really good at? Taking care of us and cooking
12. What is your mom not very good at? Science (this is so true!!)
13. What does your mom do for her job? Work on the computer
14. What is your mom's favorite food? Pizza?? (yuck!)
15. What makes you proud of your mom? Be good
16. If your mom were a cartoon character, who would she be? A princess
17. What do you and your mom do together? Play
18. How are you and your mom the same? We have the same personality
19. How are you and your mom different? I don't know
20. How do you know your mom loves you? Because I'm good.
1. What is something mom always says to you? Be nice and to eat.
2. What makes mom happy? When I'm good.
3. What makes mom sad? When I don't eat.
4. How does mom make you laugh? Tickling us
5. What was mom like as a child? I don't know
6. How old is your mom? 27 (wow I'm impressed he remembered!)
7. How tall is your mom? 30 points
8. What is her favorite thing to do? Play on the computer, tickle kids and make them laugh
9. What does your mom do when you're not around? Sleeps
10. If your mom becomes famous, what will it be for? Money so we can buy and RV
11. What is your mom really good at? Taking care of us and cooking
12. What is your mom not very good at? Science (this is so true!!)
13. What does your mom do for her job? Work on the computer
14. What is your mom's favorite food? Pizza?? (yuck!)
15. What makes you proud of your mom? Be good
16. If your mom were a cartoon character, who would she be? A princess
17. What do you and your mom do together? Play
18. How are you and your mom the same? We have the same personality
19. How are you and your mom different? I don't know
20. How do you know your mom loves you? Because I'm good.
Monday, June 30, 2008
Aja Update!
I thought I would post a quick update and let everyone know how Aja is doing.
Since her surgery, Aja has started with her newborn reflexes. She opens and closes her hands and kicks her little legs around. Before she would just kind of sit there and not move too much. She LOVES looking up. She does it all the time. It's kind of like a whole new world for her up there. She is working on her smile too, it's so cute! She has also found her little voice and uses it often! She has been keeping me pretty busy with holding her. I have to hold her CONSTANTLY. Her head circumference has gone down from 41.5 cm to 37.5 cm!! YAY! She looks so good. I don't have any recent pictures uploaded, but will have some posted soon.
A lot of people have asked me if she will have long term effects from this so here you go:
Since she was born with this condition (we are about 90% certain that she had it in utero) the chances of her having a mental disability are 30%. Before the shunt procedure was invented, the chance of death was 54% now it is down to 5%. The chances of mental disability before were 62% and now down to 30%. So the chance of her having a problem are still kind of high. Any shunt revisions she has ups that percentage as well. This has been one of the biggest concerns for us since her diagnosis, but we have really educated ourselves and have some evaluators coming in to start her on physical therapy when she turns 1 month. We are also researching different support groups for us to join so that we can maybe help anyone else that goes through this and to find support for Mitch and me.
So far though, Aja seems pretty much like any newborn. We won't be able to tell if anything is going on with her until she starts reaching her milestones. Either way we are preparing ourselves for whatever outcome she may have.
As for the other kids, they are doing okay with it. The person who seems most affected by this whole thing (besides us and Aja of course) is Cohen. I feel bad that I can't be there more for him as much as I could before. It's been really hard for me to watch him pull himself away from me and start clinging to Mitch. It's great for Mitch, but it breaks my heart. I'm hoping that we can get on some sort of schedule soon (it has all flown out the window with this thing) so that I can go back to doing what I was with him and so he won't feel so left out.
Anyway, I thought you would find that interesting. It's not an easy condition to deal with as it's a wait and see game and any sign of a shunt malfunction means we have to run down to SLC as fast as we can to avoid any more brain damage. It has been really hard on Mitch and me to go through this as we are terrified right now of missing any signs of a shunt malfunction, but we deal with it a day at a time right now and rely on each other a lot.
Since her surgery, Aja has started with her newborn reflexes. She opens and closes her hands and kicks her little legs around. Before she would just kind of sit there and not move too much. She LOVES looking up. She does it all the time. It's kind of like a whole new world for her up there. She is working on her smile too, it's so cute! She has also found her little voice and uses it often! She has been keeping me pretty busy with holding her. I have to hold her CONSTANTLY. Her head circumference has gone down from 41.5 cm to 37.5 cm!! YAY! She looks so good. I don't have any recent pictures uploaded, but will have some posted soon.
A lot of people have asked me if she will have long term effects from this so here you go:
Since she was born with this condition (we are about 90% certain that she had it in utero) the chances of her having a mental disability are 30%. Before the shunt procedure was invented, the chance of death was 54% now it is down to 5%. The chances of mental disability before were 62% and now down to 30%. So the chance of her having a problem are still kind of high. Any shunt revisions she has ups that percentage as well. This has been one of the biggest concerns for us since her diagnosis, but we have really educated ourselves and have some evaluators coming in to start her on physical therapy when she turns 1 month. We are also researching different support groups for us to join so that we can maybe help anyone else that goes through this and to find support for Mitch and me.
So far though, Aja seems pretty much like any newborn. We won't be able to tell if anything is going on with her until she starts reaching her milestones. Either way we are preparing ourselves for whatever outcome she may have.
As for the other kids, they are doing okay with it. The person who seems most affected by this whole thing (besides us and Aja of course) is Cohen. I feel bad that I can't be there more for him as much as I could before. It's been really hard for me to watch him pull himself away from me and start clinging to Mitch. It's great for Mitch, but it breaks my heart. I'm hoping that we can get on some sort of schedule soon (it has all flown out the window with this thing) so that I can go back to doing what I was with him and so he won't feel so left out.
Anyway, I thought you would find that interesting. It's not an easy condition to deal with as it's a wait and see game and any sign of a shunt malfunction means we have to run down to SLC as fast as we can to avoid any more brain damage. It has been really hard on Mitch and me to go through this as we are terrified right now of missing any signs of a shunt malfunction, but we deal with it a day at a time right now and rely on each other a lot.
Monday, June 23, 2008
Hydrocephalus
Definition: is a term derived from the Greek words "hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain". People with this condition have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.
Just typing this out makes me cry. Our sweet little baby girl was just diagnosed with this on Friday, June 20, 2008. Everyone keeps asking me how I knew so I will type you out our "journey".
When Aja was born and they took her to be cleaned and evaluated in the nursery they noticed that she had a bulging fontanelle (soft spot on top of the head). They, and our doctor had told us that it was because it was just a precipitous (fast) labor. We didn't think anything of it as hey, it's the doctor right?? Her head at that time measured 36 cm.
Fast forward to Tuesday when Aja was 4 days old. Her pediatrician asked us to come in and have her checked out. I pointed out that her head was not going down and he said, well it's still measuring 36 cm, just give it time. Okie doke.
Saturday, Aja is 1 week old and I whip out the tape measure that the hospital had given us to keep track on our own and I get a measurement of 39 cm. I was quite surprised, but prayed that maybe I had measured it wrong. Deep down though I knew something was wrong. As time goes on Aja's head is getting bigger and more shiny. She sleeps a lot and I can't understand why my newborn is sleeping more as she gets older rather than being more alert and active. Wednesday, June 18 Mitch and I are at the store and we are talking about Aja and we both notice that her temples are sticking out really, really bad. We get home and I measure her head again, making sure it's in the same spot as before and get a measurment of 41 cm. Mitch says, call the doctor and make an appointment for tomorrow.
Thursday, June 19 I call the doc and get in for our 2 week appointment and head check. The nurse measures and I ask her if 1.5 inch growth is normal. She says she has never seen it so no, it's not normal. Doc comes in and after much talking gets quiet and starts telling me about shunts. He orders an ultrasound for 4 that afternoon. Get the u/s done and come home at 5 and the phone is ringing. It's the doctor and he has told me to call Primary Childrens Medical Center department of Pediatric Neurosurgery. They want to see Aja the very next day. They tell me she has enlarged ventricles and needs to be seen. I call and make the appointment (of course I'm freaking out at this point, I mean neurosurgery??? holy crapp! what is going on with my baby!). It's for Friday at noon. We head to SLC that night. Friday we get to PCMC and meet with the doctor who tells us that she has what is called "sunsetting" of the eyes; so basically she can only look down as the pressure in her brain makes it impossible to look up, the fatigue (she slept a lot!), and her soft spots were spread out. He sent us down for a CT scan and had us come back to the office. He pulls up her scans on the computer and tells us that the dark spots are fluid, the white spots are normal tissue. There was much more black than white. Mitch and I broke down right there. It was bad. 3 of 4 ventricles were filled with fluid and the 4th wasn't in that great of shape. The doctor says they try to avoid surgery, but she needs it, and now. We get admitted at 8 that night.
Saturday morning Aja goes in for surgery at 9. We go into recovery and I break down. My baby is limp and her poor little head looks so angry from where the tube is going. The nurse tells us that with the amount of pressure on Aja's brain that it felt like a constant migraine headache. I break down again because my baby has been in so much pain, yet she has been so good. She hardly cried (or cries even now!)and she never acted like she was in pain. My guilt is running high, but I know that I did the best I could as I'm not an M.D.
Aja has it rough for a few hours, but they measure her head again and it's down to 40 cm already! WOW! We get many visitors that night and lots of support. Aja does so well! She is acting so much more alert, active and she has her newborn reflexes! It's amazing, too, how different her head looks. Her cheeks poke out further than her head! Before all this she had SO many soft spots, but they are slowly closing. Also, the fontanelle at the top reached the middle of her forehead indicating that her facial bones were spreading which could have caused her to require craniofacial surgery, but we caught it in time. That spot is starting to recede to its normal position. She might/will have to go through shunt revisions as they can malfunction requiring her to be seen and treated immediately.
I cry while typing this because she is so strong. She is so amazing that she has gone through this as well as she has. She will require the shunt for the rest of her life and she will have some limitations (as far as contact sports and stuff like that), she may have mental disabilities, but I don't care. She has such a strong, sweet spirit and she is as tough as nails.
This is a picture of 2 different shunt procedures. Aja has the VP shunt. That means ventriculoperitoneal.
This is Aja before. It really shows her temple sticking out and notice how shiny her head is.
This is where the shunt enters her head.
This is where the shunt goes behind her ear.
Here is an after picture of Aja. Notice how her veins aren't as prominent and her head is not as shiny.
I just wanted to thank all our family and friends for the love and support they have shown us in the last few days.
Just typing this out makes me cry. Our sweet little baby girl was just diagnosed with this on Friday, June 20, 2008. Everyone keeps asking me how I knew so I will type you out our "journey".
When Aja was born and they took her to be cleaned and evaluated in the nursery they noticed that she had a bulging fontanelle (soft spot on top of the head). They, and our doctor had told us that it was because it was just a precipitous (fast) labor. We didn't think anything of it as hey, it's the doctor right?? Her head at that time measured 36 cm.
Fast forward to Tuesday when Aja was 4 days old. Her pediatrician asked us to come in and have her checked out. I pointed out that her head was not going down and he said, well it's still measuring 36 cm, just give it time. Okie doke.
Saturday, Aja is 1 week old and I whip out the tape measure that the hospital had given us to keep track on our own and I get a measurement of 39 cm. I was quite surprised, but prayed that maybe I had measured it wrong. Deep down though I knew something was wrong. As time goes on Aja's head is getting bigger and more shiny. She sleeps a lot and I can't understand why my newborn is sleeping more as she gets older rather than being more alert and active. Wednesday, June 18 Mitch and I are at the store and we are talking about Aja and we both notice that her temples are sticking out really, really bad. We get home and I measure her head again, making sure it's in the same spot as before and get a measurment of 41 cm. Mitch says, call the doctor and make an appointment for tomorrow.
Thursday, June 19 I call the doc and get in for our 2 week appointment and head check. The nurse measures and I ask her if 1.5 inch growth is normal. She says she has never seen it so no, it's not normal. Doc comes in and after much talking gets quiet and starts telling me about shunts. He orders an ultrasound for 4 that afternoon. Get the u/s done and come home at 5 and the phone is ringing. It's the doctor and he has told me to call Primary Childrens Medical Center department of Pediatric Neurosurgery. They want to see Aja the very next day. They tell me she has enlarged ventricles and needs to be seen. I call and make the appointment (of course I'm freaking out at this point, I mean neurosurgery??? holy crapp! what is going on with my baby!). It's for Friday at noon. We head to SLC that night. Friday we get to PCMC and meet with the doctor who tells us that she has what is called "sunsetting" of the eyes; so basically she can only look down as the pressure in her brain makes it impossible to look up, the fatigue (she slept a lot!), and her soft spots were spread out. He sent us down for a CT scan and had us come back to the office. He pulls up her scans on the computer and tells us that the dark spots are fluid, the white spots are normal tissue. There was much more black than white. Mitch and I broke down right there. It was bad. 3 of 4 ventricles were filled with fluid and the 4th wasn't in that great of shape. The doctor says they try to avoid surgery, but she needs it, and now. We get admitted at 8 that night.
Saturday morning Aja goes in for surgery at 9. We go into recovery and I break down. My baby is limp and her poor little head looks so angry from where the tube is going. The nurse tells us that with the amount of pressure on Aja's brain that it felt like a constant migraine headache. I break down again because my baby has been in so much pain, yet she has been so good. She hardly cried (or cries even now!)and she never acted like she was in pain. My guilt is running high, but I know that I did the best I could as I'm not an M.D.
Aja has it rough for a few hours, but they measure her head again and it's down to 40 cm already! WOW! We get many visitors that night and lots of support. Aja does so well! She is acting so much more alert, active and she has her newborn reflexes! It's amazing, too, how different her head looks. Her cheeks poke out further than her head! Before all this she had SO many soft spots, but they are slowly closing. Also, the fontanelle at the top reached the middle of her forehead indicating that her facial bones were spreading which could have caused her to require craniofacial surgery, but we caught it in time. That spot is starting to recede to its normal position. She might/will have to go through shunt revisions as they can malfunction requiring her to be seen and treated immediately.
I cry while typing this because she is so strong. She is so amazing that she has gone through this as well as she has. She will require the shunt for the rest of her life and she will have some limitations (as far as contact sports and stuff like that), she may have mental disabilities, but I don't care. She has such a strong, sweet spirit and she is as tough as nails.
This is a picture of 2 different shunt procedures. Aja has the VP shunt. That means ventriculoperitoneal.
This is Aja before. It really shows her temple sticking out and notice how shiny her head is.
This is where the shunt enters her head.
This is where the shunt goes behind her ear.
Here is an after picture of Aja. Notice how her veins aren't as prominent and her head is not as shiny.
I just wanted to thank all our family and friends for the love and support they have shown us in the last few days.
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