Sorry about the lack of updates, but I wanted to wait until I had enough for one big post, instead of a lot of little posts. Since January, Aly has been working hard on a lot of her development. She has had followups with Occupational and Physical therapy and she has tested well enough on both that she is no longer going to therapy! She still gets Early Intervention twice a month, so she is able to work and be watched there. Aly started Speech therapy late last year. She is very delayed in speech and only has a handful of words that she uses. She is doing well with sign language, she can sign: more, food, baby, butterfly, caterpillar, fish, hat, help, dog, cookie, drink, banana, elephant, all done, and she is learning thank you. She also has a picture board where she can use little pictures of activities like "brushing teeth", "going outside" or "TV" to tell us what she wants to do. It's been helpful, although she constantly wants to brush her teeth.
Aly has had followups with her eye doctor and her rehab doctor and both were good visits. Her eye doctor thinks her glasses are working and her eyes are staying aligned. Her rehab doctor said her muscles are developing correctly and she was not concerned about her foot turning in.
She recently had a second MRI as a followup with her Neurologist. We went to the Riverton branch of Primary's instead of the Salt Lake location. Aly loved the waiting room with all the fish and aquatic theme. She also loved the toys, including a little pink car that she had fun driving around. She did well under the sedation for the test, and we will have the results pretty soon, but we won't see her doctor until September.
This May, Aly has made some good progress in Speech. She has finally started saying "Mom." You don't want to know how excited that has made me. It really makes me feel like a real Mom when my baby calls me that. When you child doesn't talk, it makes every little bit of communication and speech more precious and sweet.
Just because Aly can't talk, doesn't mean she's not smart. She understands a lot of what people say to her, and she can answer questions and do simple tasks. She loves building towers, digging in the garden, kicking a ball, putting together puzzles and coloring. I feel like she is a mostly "normal" girl, even though she goes to the doctor a little more than the average kid. She loves Daniel Tiger, Dora, Cailou and playing with the iPad. She seems to take everything in stride.
GO ALY!
Friday, May 30, 2014
Thursday, January 2, 2014
2013 In Review
These were Aly's 2013 Resolutions:
-Learn to walk-
Say Mama (still working on this one)
Learn to drink from a sippy cup-
Cut some new teeth-Grow big and stronger-
Push my walking toy all by myself-
Put the coins in my piggy bank toy by myself-
Feed myself
-Catch the kitty (she still hates the kitty)
-Get my eyes straightened out
-Stop taking my phenobarbital
-Stay out of the hospital
-Give hugs and kisses to everyone I love
-Meet all of my Mama's friends who cheered for me when I was sick
I think that is pretty impressive, I don't think I've ever done that well at keeping resolutions.
Aly has had a very good 2013. She graduated from physical and occupational therapy. She has been off her seizure medicine since January. She had her eye surgery in March, but she handled it very well and her eyes have been straight since. She learned to walk in March as well. Now she is running and soon will be jumping. She still needs work on her speech, but she is signing "more" and she is also nodding her head for yes and shaking her head for no.
I am very excited to see what is in store for her this year. She's such a little trooper, she is stubborn but she also has a lot of fire and determination. When she wants something, she goes after it until she gets it.
GO ALY!
Say Mama (still working on this one)
-Catch the kitty (she still hates the kitty)
I think that is pretty impressive, I don't think I've ever done that well at keeping resolutions.
Aly has had a very good 2013. She graduated from physical and occupational therapy. She has been off her seizure medicine since January. She had her eye surgery in March, but she handled it very well and her eyes have been straight since. She learned to walk in March as well. Now she is running and soon will be jumping. She still needs work on her speech, but she is signing "more" and she is also nodding her head for yes and shaking her head for no.
I am very excited to see what is in store for her this year. She's such a little trooper, she is stubborn but she also has a lot of fire and determination. When she wants something, she goes after it until she gets it.
GO ALY!
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| Aly in January 2013 |
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| Aly in December 2013 |
Tuesday, October 22, 2013
Two
Dear Aly,
Happy 2nd Birthday! What a year its been! You've done so much in the last 12 months. You got glasses, had an EEG, went off your seizure meds, had eye muscle surgery, learned to walk, went to the zoo and Lagoon for the first time, you graduated from Physical therapy and Occupational therapy, learned to kick and throw a ball, rode a merry-go-round and more.
In a year you have come so far. You have worked so hard at meeting milestones and you are doing so well at getting caught up. Your Dad and I have been encouraging and helping you along the way, but so much of your success has just been due to your strength and determination. You may be stubborn and independent, but in some cases its a good thing.
Now we have a new focus, getting you talking. You have shown yourself to be determined and tough. We are ready to tackle this and help you in all the ways we can. It will be hard, and it will be frustrating, but I know you can do it.
Happy birthday my sweet girl. You are such a joy to be around. You are a smiley happy girl and are so much fun to be around. You have so many favorites and you love so many things. You love to read books, and toys, and animals. You will eat anything and love food. You love to spin and dance. You love watching Sprout and your favorite shows are Wibbly Pig and The Chica Show. You love to color and draw. You love baths now, and splashing and kicking in the water. You love the outdoors, going for walks and digging in the dirt. You love waving at people and talking to the cats and exploring everything around you.
I love your sweetness and the little personality that you've developed. I love everything you are. Most of all, I love being your mom.I hope you have an amazing 2nd birthday. I can't wait to see what you do next.
Sunday, September 15, 2013
Little Successes
"Hooray for little successes, they lead to big ones!"
I remember this was one of the best things someone said to me when Aly was in the hospital.
We celebrated every little accomplishment, when she was taken off every machine, when she moved from the PICU to the infant floor and so on. Aly's recovery has been measured in little successes. Every little thing she does, is something that is part of the process toward moving toward big successes. She walks, she draws, she kicks a ball, she can do her shape sorter, she hugs her puppy. She points at her Mom and Dad, she understands basic commands. Every little success is worth praise. She works hard for these accomplishments. I feel like most parents don't realize what it's like when nothing comes easy for your child.
I try not to compare my child to other kids, but it happens. It happens a lot. There's a lot of mental math going on. "Oh little Billy was 11 months when he started taking/walking/doing complex algebra etc." I hate to say it, but it hurts. It's like a little stab in the gut every time I hear about a baby half Aly's age doing something she can't do yet. I feel like I am forever going to feel the need to justify Aly's delays to the world. Like I am going to have to go around with "BRAIN DAMAGE" stamped on her forehead. I just want her to try and to feel good about what she can do, and not feel bad about what she can't do, or what she can't do well.
So no, Aly is not talking. She's not jumping, she's not doing gymnastics or singing songs or reading (thanks ABC Mouse for making people think its normal for a 2 year old to be reading). What she is doing is more important. She loves to color, she loves to go outside, she loves to eat, she loves to give mom and dad a bite of food, she pretends (that is something she is actually advanced on, so there's that) she likes to pet kitties, and likes to dance to Chica or Daniel Tiger.
Yesterday, I picked her up and she gave me a hug. That was like, post on Facebook milestone worthy in my eyes. It was amazing. Another little success.
She is on the way to normal, she may never get there, but she is on the way. She has graduated from Physical Therapy and is in the range of normal for the first time in a year. When we got the letter from her therapist summarizing her accomplishments, we were thrilled. I'm hoping we can slowly reduce her therapy and doctor's visits, until she is is like a regular, normal kid. Most parents don't want normal, they want better or advanced. I want normal, I want average, I want easy.
GO ALY!
I remember this was one of the best things someone said to me when Aly was in the hospital.
We celebrated every little accomplishment, when she was taken off every machine, when she moved from the PICU to the infant floor and so on. Aly's recovery has been measured in little successes. Every little thing she does, is something that is part of the process toward moving toward big successes. She walks, she draws, she kicks a ball, she can do her shape sorter, she hugs her puppy. She points at her Mom and Dad, she understands basic commands. Every little success is worth praise. She works hard for these accomplishments. I feel like most parents don't realize what it's like when nothing comes easy for your child.
I try not to compare my child to other kids, but it happens. It happens a lot. There's a lot of mental math going on. "Oh little Billy was 11 months when he started taking/walking/doing complex algebra etc." I hate to say it, but it hurts. It's like a little stab in the gut every time I hear about a baby half Aly's age doing something she can't do yet. I feel like I am forever going to feel the need to justify Aly's delays to the world. Like I am going to have to go around with "BRAIN DAMAGE" stamped on her forehead. I just want her to try and to feel good about what she can do, and not feel bad about what she can't do, or what she can't do well.
So no, Aly is not talking. She's not jumping, she's not doing gymnastics or singing songs or reading (thanks ABC Mouse for making people think its normal for a 2 year old to be reading). What she is doing is more important. She loves to color, she loves to go outside, she loves to eat, she loves to give mom and dad a bite of food, she pretends (that is something she is actually advanced on, so there's that) she likes to pet kitties, and likes to dance to Chica or Daniel Tiger.
Yesterday, I picked her up and she gave me a hug. That was like, post on Facebook milestone worthy in my eyes. It was amazing. Another little success.
She is on the way to normal, she may never get there, but she is on the way. She has graduated from Physical Therapy and is in the range of normal for the first time in a year. When we got the letter from her therapist summarizing her accomplishments, we were thrilled. I'm hoping we can slowly reduce her therapy and doctor's visits, until she is is like a regular, normal kid. Most parents don't want normal, they want better or advanced. I want normal, I want average, I want easy.
GO ALY!
Friday, July 19, 2013
One Year Later
One year ago Aly was sent to the hospital due to seizures and then later it was discovered that her brain was dangerously swollen. The next ten days were the worst days of my life. A year later, and thinking about certain parts of it still make me upset, like physically ill. I still get triggered by certain things. I remember so much of it so clearly, but at the time it all seemed to blend together.
Since she left the hospital she has done very well. She has not had a seizure since July. She has been off her seizure medicine since January. She went through an illness with a high fever and never had a reaction. She went under anesthesia in March for her eye surgery and did just fine with it. Her neurologist had originally prescribed a "rescue medicine" in case she had another seizure, but she now doesn't think its necessary. Aly will always be more susceptible to seizures, but we'll deal with them if they come.
I'm not gonna lie, I do worry that the seizures will come back and that we'll be right back where we started. I do worry about Aly probably more than the average mother. We may spoil her a little more, we may go easier on her than other kids. Hopefully we'll relax as she stays healthy and out of the hospital. :)
During the time Aly was sick, I waffled between wanting to document what was happening in pictures, and not wanting any physical reminder of how she looked. She did not look like herself, she wasn't opening her eyes and she was really puffy from medicine they had her on. Yet, she actually was losing weight. However, there is one picture of her at her worst that we have, and I am glad it exists if only to show what she bounced back from.
So, I'm hoping this next year can be about healing and hopefully we can stay out of the hospital. I was excited when we went through May and June without visiting Primary's once. Our neurologist wants to do another MRI next year, and I'm fine with that. Aly is still in Early Intervention, but she is taking a break from her other therapies. She will go back in a month or two. She also will need to start Speech Therapy at some point unless she wakes up talking (who knows, it could happen!)
GO ALY!
Since she left the hospital she has done very well. She has not had a seizure since July. She has been off her seizure medicine since January. She went through an illness with a high fever and never had a reaction. She went under anesthesia in March for her eye surgery and did just fine with it. Her neurologist had originally prescribed a "rescue medicine" in case she had another seizure, but she now doesn't think its necessary. Aly will always be more susceptible to seizures, but we'll deal with them if they come.
I'm not gonna lie, I do worry that the seizures will come back and that we'll be right back where we started. I do worry about Aly probably more than the average mother. We may spoil her a little more, we may go easier on her than other kids. Hopefully we'll relax as she stays healthy and out of the hospital. :)
During the time Aly was sick, I waffled between wanting to document what was happening in pictures, and not wanting any physical reminder of how she looked. She did not look like herself, she wasn't opening her eyes and she was really puffy from medicine they had her on. Yet, she actually was losing weight. However, there is one picture of her at her worst that we have, and I am glad it exists if only to show what she bounced back from.
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| Aly with breathing tube and EEG hooked up |
So, I'm hoping this next year can be about healing and hopefully we can stay out of the hospital. I was excited when we went through May and June without visiting Primary's once. Our neurologist wants to do another MRI next year, and I'm fine with that. Aly is still in Early Intervention, but she is taking a break from her other therapies. She will go back in a month or two. She also will need to start Speech Therapy at some point unless she wakes up talking (who knows, it could happen!)
In the past year I have thought a lot about life, my beliefs, and what it all means to me. Someday I'd like to make a post putting it all into words, but for now, I just want to be happy and once again thank some people who made the darkest, hardest time in my life better. You really learn who loves you in a time like this. People came out of everywhere to show their love and support for us. Strangers were offering assistance, praying and thinking of us. I have never known so much love.
Aly is the most loved baby I have ever seen. She is so sweet and happy and loving. She will smile at anyone. Everyone loves her. I have never gone to a store without at least one person stopping to tell us how cute she is. All she's been through has not changed her. Every day I think about how lucky I am to be her Mom, and how lucky we are to still have her with us.
GO ALY!
Monday, April 22, 2013
18 Months
At 18 months Aly is walking almost all the time. I thought she would just get up and walk one day but its kind of a gradual process. She is doing really well and getting so confident and faster all the time. She has started babbling a lot, no real words but plenty of noise.
She loves to point at body parts, especially belly buttons, noses and mouths. She can pet her kitty friends, but is scared of most dogs. She can clap, wave and we are teaching her patty cake.
She has stopped going to OT and we are hoping once she walks full time she can stop PT. She still has Early Intervention with her therapist at least once a month though.
She had her follow-up with her eye doctor on the 17th and he thought she looked great. She will still be seen by the doctor every 4 months to monitor her eyes and make sure they stay straight. She is starting to grow out of her glasses. She still wears 12 months clothes, but they are getting tight.
She loves Daniel Tiger's Neighborhood and Sesame Street. She will eat half of anything you have and loves everything. She is well behaved in public, loves attention, but is starting to get some stranger anxiety. She loves to go outside and pick up rocks or sticks and also loves wind in her face.
She loves to play with Mommy and Daddy's phones, and she loves to pull stuff off of tables, and she loves to pull down games or dvds from the racks. She will try to grab stuff off of shelves at stores as well.
She is a very happy little girl. Always smiling, laughing and so interested in the world. She can be a bit of a troublemaker with how inquisitive she is, and she will keep you on your toes! If there is something that can be thrown, dropped or pulled down, she will find it.She has grown so much in her short life and she has so much more to learn and discover. Everyday she learns something new and she can't wait to learn more. I know she will continue to impress us and grow everyday.
GO ALY!
She loves to point at body parts, especially belly buttons, noses and mouths. She can pet her kitty friends, but is scared of most dogs. She can clap, wave and we are teaching her patty cake.
She has stopped going to OT and we are hoping once she walks full time she can stop PT. She still has Early Intervention with her therapist at least once a month though.
She had her follow-up with her eye doctor on the 17th and he thought she looked great. She will still be seen by the doctor every 4 months to monitor her eyes and make sure they stay straight. She is starting to grow out of her glasses. She still wears 12 months clothes, but they are getting tight.
She loves Daniel Tiger's Neighborhood and Sesame Street. She will eat half of anything you have and loves everything. She is well behaved in public, loves attention, but is starting to get some stranger anxiety. She loves to go outside and pick up rocks or sticks and also loves wind in her face.
She loves to play with Mommy and Daddy's phones, and she loves to pull stuff off of tables, and she loves to pull down games or dvds from the racks. She will try to grab stuff off of shelves at stores as well.
She is a very happy little girl. Always smiling, laughing and so interested in the world. She can be a bit of a troublemaker with how inquisitive she is, and she will keep you on your toes! If there is something that can be thrown, dropped or pulled down, she will find it.She has grown so much in her short life and she has so much more to learn and discover. Everyday she learns something new and she can't wait to learn more. I know she will continue to impress us and grow everyday.
GO ALY!
Tuesday, March 19, 2013
Aly's Eye Surgery Adventure!
March 14th was known to most people as Pi Day, but to us, it was the day of doom. Aly's eye surgery on both eyes was scheduled. Primary's doesn't just tell you what time, they go by age and the youngest kids go first, so the day before they call, tell you what time to come in, and when your child has to stop eating/drinking. Aly got the call to come in at 6:00 am Thursday morning. She had physical therapy the night before and just was not into it. I wonder if she was feeding off our nervous energy.
We all got up early Thursday morning and packed up for Primary's. We got there early, but had a little trouble finding the same day surgery waiting room. We got checked in pretty quickly and then had to wait in a couple different waiting rooms. Aly's surgery was scheduled for 7:30, and we were nervous, but she was having fun playing with toys, watching Tangled and crawling around. We met with the anesthesiologist Dr. Spano, a very nice man who promised he would take good care of her, and try not to put the IV in the hand she sucks the thumb of. Dr. Hoffman came in and checked up with us. He said surgery would take about an hour and he had about an 80% chance of fixing her eyes completely. We gave Aly kisses and hugs and sent her off with Dr. Spano.
About an hour later, Dr. Hoffman came back to bring me to post-op. Aly was not happy when I got back there. They gave her a bottle of apple juice and whenever she would drink it, she would stop breathing as much, so they'd have to bring over the oxygen. She was just so upset, she pretty much just cried non stop for almost an hour. After we got moved into regular recovery, she still would not calm down. She wouldn't eat, or suck her thumb. We even tried turning on Daniel Tiger's Neighborhood, which did quiet her down for a little bit.
Once we were discharged, we packed her in the car and gave her all her favorite toys. She slept most of the way home and then woke up once we were in the drive thru at Taco Bell. She threw up about half the apple juice all over herself and her car seat and on some of her toys. Once we got home, she still was really upset. She wouldn't nap, and she just crawled around her crib and cried. Eventually she passed out and slept for awhile, and slowly started to come around. By the second day, she was almost completely back to normal. Her eyes are red in the corners, but they are a lot straighter. She will still need glasses, but she will be able to see better. She has a follow up in about a month.
GO ALY!
We all got up early Thursday morning and packed up for Primary's. We got there early, but had a little trouble finding the same day surgery waiting room. We got checked in pretty quickly and then had to wait in a couple different waiting rooms. Aly's surgery was scheduled for 7:30, and we were nervous, but she was having fun playing with toys, watching Tangled and crawling around. We met with the anesthesiologist Dr. Spano, a very nice man who promised he would take good care of her, and try not to put the IV in the hand she sucks the thumb of. Dr. Hoffman came in and checked up with us. He said surgery would take about an hour and he had about an 80% chance of fixing her eyes completely. We gave Aly kisses and hugs and sent her off with Dr. Spano.
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| Aly enjoying the waiting room |
About an hour later, Dr. Hoffman came back to bring me to post-op. Aly was not happy when I got back there. They gave her a bottle of apple juice and whenever she would drink it, she would stop breathing as much, so they'd have to bring over the oxygen. She was just so upset, she pretty much just cried non stop for almost an hour. After we got moved into regular recovery, she still would not calm down. She wouldn't eat, or suck her thumb. We even tried turning on Daniel Tiger's Neighborhood, which did quiet her down for a little bit.
Once we were discharged, we packed her in the car and gave her all her favorite toys. She slept most of the way home and then woke up once we were in the drive thru at Taco Bell. She threw up about half the apple juice all over herself and her car seat and on some of her toys. Once we got home, she still was really upset. She wouldn't nap, and she just crawled around her crib and cried. Eventually she passed out and slept for awhile, and slowly started to come around. By the second day, she was almost completely back to normal. Her eyes are red in the corners, but they are a lot straighter. She will still need glasses, but she will be able to see better. She has a follow up in about a month.
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| Aly the day after surgery |
GO ALY!
Wednesday, February 6, 2013
Support
Lately I have been thinking about support groups. There seems to be a support group for everything. Children with heart problems, autism, epilepsy, etc. There's a support group I belong to for people with children in glasses, called Little Four Eyes. It's been very helpful with Aly's strabismus and given me good advice and other parents to talk to that understand our situation.
Aly had a followup appointment with her PO (Pediatric Opthamologist) and because her glasses are not completely correcting her eye turn, he wants to do surgery. I was not expecting that. I thought we had a lot longer to wait until we went that direction. But her eyes are still working together and she does not have a lazy eye yet, so surgery is probably the best option. If she developed a lazy eye we would have to correct that first and then do surgery, so it seems like surgery is kind of the goal no matter what.
I am not happy about this. I was hoping 2013 would be the year of less time at Primary's, less doctor visits, less intervention. I've been talking to the L4E gang about things and they have been very supportive.
But I wish there was another support group for us, but the problem is I don't know what support group I'm supposed to belong to. There's no "Babies who had seizures and brain swelling that had no apparent cause and spent 10 days in the hospital with assorted maladies and are now mostly fine but have development delays and other issues." I don't really relate to any one group more than others. And it's hard because I feel like I don't have any outlet with that. The only one who understand are me and my family. I don't know what to expect, and I don't know that even if I found a group for this, they would know either. We're kind of on our own here. Aly gets to blaze her own trail, and we get to learn as we go, I guess.
So, we have surgery scheduled for March 14. They will call us the day before to let us know when to go in. I guess they basically do it by age, so the youngest kids go first. I hope she is one of the youngest ones so we have less time to wait. I am worried that the surgery won't go well, that it won't fix her eyes or that she will have a reaction to the anesthesia. She is such a good happy baby and I really hate doing anything to her that will hurt her, but if we can get her eyes corrected, it will help so much in the future. At least that is how I am going to look at it. Wish us luck!
On a happier note, my friend's babies are out of the hospital and home. I am so happy they are doing well and are off their machines and being sweet baby boys. Now, the fun really starts. :)
GO ALY!
Aly had a followup appointment with her PO (Pediatric Opthamologist) and because her glasses are not completely correcting her eye turn, he wants to do surgery. I was not expecting that. I thought we had a lot longer to wait until we went that direction. But her eyes are still working together and she does not have a lazy eye yet, so surgery is probably the best option. If she developed a lazy eye we would have to correct that first and then do surgery, so it seems like surgery is kind of the goal no matter what.
I am not happy about this. I was hoping 2013 would be the year of less time at Primary's, less doctor visits, less intervention. I've been talking to the L4E gang about things and they have been very supportive.
But I wish there was another support group for us, but the problem is I don't know what support group I'm supposed to belong to. There's no "Babies who had seizures and brain swelling that had no apparent cause and spent 10 days in the hospital with assorted maladies and are now mostly fine but have development delays and other issues." I don't really relate to any one group more than others. And it's hard because I feel like I don't have any outlet with that. The only one who understand are me and my family. I don't know what to expect, and I don't know that even if I found a group for this, they would know either. We're kind of on our own here. Aly gets to blaze her own trail, and we get to learn as we go, I guess.
So, we have surgery scheduled for March 14. They will call us the day before to let us know when to go in. I guess they basically do it by age, so the youngest kids go first. I hope she is one of the youngest ones so we have less time to wait. I am worried that the surgery won't go well, that it won't fix her eyes or that she will have a reaction to the anesthesia. She is such a good happy baby and I really hate doing anything to her that will hurt her, but if we can get her eyes corrected, it will help so much in the future. At least that is how I am going to look at it. Wish us luck!
On a happier note, my friend's babies are out of the hospital and home. I am so happy they are doing well and are off their machines and being sweet baby boys. Now, the fun really starts. :)
GO ALY!
Thursday, January 10, 2013
The Next Step
Aly had her follow up appointment with her neurologist on Tuesday. Dr. Betsy said her EEG was normal. She checked Aly's reflexes and muscle tone and said they looked good. She was surprised how different Aly looked just 4 months later. Dr. Betsy gave us the green light to begin taking Aly off her seizure medicine. We will slowly taper down the dose from 7ml to 5ml to 2.5 and then nothing. I have been hoping to be able to do this for a long time. The phenobarbital has been very good, she has not had any seizures since she left the hospital, and we haven't noticed any side effects from it, but the Doctor says it can cause cognitive and behavioral problems with long term use. We also were given some doses of Ativan we can give her in case she has a seizure longer than 5 minutes. I am hoping she doesn't have any more, but we were warned that she will always be susceptible to seizures especially when she is sick or has a fever.
Every time we see Dr. Betsy she seems so amazed that Aly is doing so well. Without saying the words, she has pretty much implied that Aly shouldn't be doing this good. Which is great, but also leads me to think when's the other shoe gonna drop?
Aly is still seeing her PT and OT once a month each, and seeing EI 2x a month. She is not walking yet, but stands unassisted when distracted, and is getting better with her hands. She's not talking though and not saying Da like she used to. Pretty much as soon as she started crawling, she stopped talking, which her therapists say can be normal, but I wish she would start again.
Aly is doing really well in physical therapy, and should be able to stop going once she starts walking. No idea when she will stop with the other things. I believe she will qualify for Early Intervention until age 2 and may also qualify for vision therapy. As grateful as I am for all this, I sometimes feel like is this how it will always be? Just a revolving door of therapy visits and doctor appointments? Can we ever just let Aly do it on her own?
That being said, I love my little girl and am amazed at her every day. She has the cutest laugh and best smile. She brings so much love to my life, and I am so thankful she is here with me. She is a miracle through and through. She doesn't make me think of the fear and doubt and anger I felt while she was in the hospital, she only reminds me of how many people came out of the woodwork to love her when she needed it the most. She made me gain more faith in people.
One of my friends from work recently had twin baby boys, and they are currently in the NICU at two different hospitals, and one of the babies just had open heart surgery. I am glad to see people are rallying behind them strongly. Primary's makes miracles, my baby girl is proof of that. I feel so strongly for them, and I know everything they are going through must be even harder because it's two fold, and being pulled in two separate directions. I will be cheering for their babies and wishing them the best.
GO ALY!
(and GO LANE & WILL!)
Every time we see Dr. Betsy she seems so amazed that Aly is doing so well. Without saying the words, she has pretty much implied that Aly shouldn't be doing this good. Which is great, but also leads me to think when's the other shoe gonna drop?
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| Aly wearing her special "Three Little Birds" onesie for good luck |
Aly is still seeing her PT and OT once a month each, and seeing EI 2x a month. She is not walking yet, but stands unassisted when distracted, and is getting better with her hands. She's not talking though and not saying Da like she used to. Pretty much as soon as she started crawling, she stopped talking, which her therapists say can be normal, but I wish she would start again.
Aly is doing really well in physical therapy, and should be able to stop going once she starts walking. No idea when she will stop with the other things. I believe she will qualify for Early Intervention until age 2 and may also qualify for vision therapy. As grateful as I am for all this, I sometimes feel like is this how it will always be? Just a revolving door of therapy visits and doctor appointments? Can we ever just let Aly do it on her own?
That being said, I love my little girl and am amazed at her every day. She has the cutest laugh and best smile. She brings so much love to my life, and I am so thankful she is here with me. She is a miracle through and through. She doesn't make me think of the fear and doubt and anger I felt while she was in the hospital, she only reminds me of how many people came out of the woodwork to love her when she needed it the most. She made me gain more faith in people.
One of my friends from work recently had twin baby boys, and they are currently in the NICU at two different hospitals, and one of the babies just had open heart surgery. I am glad to see people are rallying behind them strongly. Primary's makes miracles, my baby girl is proof of that. I feel so strongly for them, and I know everything they are going through must be even harder because it's two fold, and being pulled in two separate directions. I will be cheering for their babies and wishing them the best.
GO ALY!
(and GO LANE & WILL!)
Monday, December 31, 2012
New Year's Resolutions
2012 is drawing to a close and I find myself reflecting on the events of 2012. This was not a good year for me. I lost some special people, and I feel like I lost some of myself. I feel like I will never be able to be the same parent I was before. I will wake up in the middle of the night when Aly cries and assume the worst. I will over analyze every move she makes, every twitch every expression. I will have a calendar littered with doctor's visits. I just wish I could be less anxious. Sometimes I think I'm getting better, some times its worse. I think I'm getting stronger, but I still find myself triggered by the smallest things.
I want 2013 to be a better year for so many reasons. I want to believe it will be, and we can make it better than the last. I won't make any resolutions for myself, but I think Aly has some.
Aly's 2013 Resolutions
-Learn to walk
-Say Mama
-Learn to drink from a sippy cup
-Cut some new teeth
-Grow big and stronger
-Push my walking toy all by myself
-Put the coins in my piggy bank toy by myself
-Feed myself
-Catch the kitty
-Get my eyes straightened out
-Stop taking my phenobarbital
-Stay out of the hospital
-Give hugs and kisses to everyone I love
-Meet all of my Mama's friends who cheered for me when I was sick
I think she's on the right track to accomplish them all. Here's to the new year!
GO ALY!
I want 2013 to be a better year for so many reasons. I want to believe it will be, and we can make it better than the last. I won't make any resolutions for myself, but I think Aly has some.
Aly's 2013 Resolutions
-Learn to walk
-Say Mama
-Learn to drink from a sippy cup
-Cut some new teeth
-Grow big and stronger
-Push my walking toy all by myself
-Put the coins in my piggy bank toy by myself
-Feed myself
-Catch the kitty
-Get my eyes straightened out
-Stop taking my phenobarbital
-Stay out of the hospital
-Give hugs and kisses to everyone I love
-Meet all of my Mama's friends who cheered for me when I was sick
I think she's on the right track to accomplish them all. Here's to the new year!
GO ALY!
Sunday, December 2, 2012
Boss-eyed
Sorry about the lack of updates. Aly is doing well. She still goes to therapy 2x a month and she has been working on her crawling and standing lately. She can stand unsupported for about 20-30 seconds. She can push her little alligator clacker toy with help, and she can sit down from standing without falling down.
Aly went to the ophthalmologist on Halloween to see Dr. Hoffman. Her neurologist referred us. Aly looks cross eyed occasionally, and one of her eyes has a tendency to turn in. This had gone away, but was starting to come back after she got out of the hospital.
She saw the eye doctor who dilated her eyes and took a closer look at them. He determined she has accomodative esotropia. From research I've done and wikipedia, this means that her eyes are not properly aligned and when she tries to focus on something the eye turns in. He said the optic nerve could have been weakened due to the pressure in her head, or she may have had the condition all along. Her vision is actually fine, its just the trouble she has focusing can cause double vision, which can then lead to a lazy eye, when the brain starts ignoring the weaker eye. He prescribed glasses to help her focus.
We had a little trouble getting her frames. Very few places actually sell glasses small enough for babies. The doctor told us to go to Costco, but they didn't have anything her size. We also had trouble when we lost her prescription and had to wait for the ophthalmologist's office to send us another copy. We found a store over by her pediatrician's office that was perfect. They ordered us a very cute pair of Miraflex glasses in the smallest size they offered. The price wasn't too bad either. So far, Aly is still getting used to wearing them. She pulls them off occasionally, and she doesn't always like wearing them. She is getting better every day. Her eyes look straighter, but not completely. I've been told that could take some time, or her prescription could need to be adjusted. She will have a follow up with Dr. Hoffman in a couple months to see.
Aly has a big month for December. She will have a physical therapy follow up, and she will have her follow up EEG toward the end of the month. I really hope everything goes well, and I'm able to update with happy news.
I'm not gonna lie. Aly getting glasses was a little hard for me. Until then, she looked like every other kid out there. I didn't want something to make her look different and single her out further. But so far, the response has been very positive. Most people simply comment on how cute she looks. I'm hoping these glasses do the trick and that they don't bother her too much. Maybe she won't need them after a year or two.
GO ALY!
Ps. For those of you who don't watch the "IT Crowd," here is where the "boss-eyed" thing is from:
Aly went to the ophthalmologist on Halloween to see Dr. Hoffman. Her neurologist referred us. Aly looks cross eyed occasionally, and one of her eyes has a tendency to turn in. This had gone away, but was starting to come back after she got out of the hospital.
She saw the eye doctor who dilated her eyes and took a closer look at them. He determined she has accomodative esotropia. From research I've done and wikipedia, this means that her eyes are not properly aligned and when she tries to focus on something the eye turns in. He said the optic nerve could have been weakened due to the pressure in her head, or she may have had the condition all along. Her vision is actually fine, its just the trouble she has focusing can cause double vision, which can then lead to a lazy eye, when the brain starts ignoring the weaker eye. He prescribed glasses to help her focus.
 | ||
| Aly in her new glasses |
We had a little trouble getting her frames. Very few places actually sell glasses small enough for babies. The doctor told us to go to Costco, but they didn't have anything her size. We also had trouble when we lost her prescription and had to wait for the ophthalmologist's office to send us another copy. We found a store over by her pediatrician's office that was perfect. They ordered us a very cute pair of Miraflex glasses in the smallest size they offered. The price wasn't too bad either. So far, Aly is still getting used to wearing them. She pulls them off occasionally, and she doesn't always like wearing them. She is getting better every day. Her eyes look straighter, but not completely. I've been told that could take some time, or her prescription could need to be adjusted. She will have a follow up with Dr. Hoffman in a couple months to see.
Aly has a big month for December. She will have a physical therapy follow up, and she will have her follow up EEG toward the end of the month. I really hope everything goes well, and I'm able to update with happy news.
I'm not gonna lie. Aly getting glasses was a little hard for me. Until then, she looked like every other kid out there. I didn't want something to make her look different and single her out further. But so far, the response has been very positive. Most people simply comment on how cute she looks. I'm hoping these glasses do the trick and that they don't bother her too much. Maybe she won't need them after a year or two.
GO ALY!
Ps. For those of you who don't watch the "IT Crowd," here is where the "boss-eyed" thing is from:
Thursday, November 22, 2012
Thank-full
I am thankful for all the wonderful people in my life. I have an amazing set of family and friends. I am thankful for every day I have with Aly, thankful that she is here and continues to grow and learn and thrive.
I just want to thank all the people who loved on Aly while she was in the hospital. I want to thank the doctors and nurses, the therapists, the techs, the social workers, lactation consultants, pretty much the entire staff of Primary Children's hospital. There is not a day that goes by that I don't think about it and feel grateful that we live so close to this important place. If you ever need a charity or a cause, Primary's is a solid choice. This place saved my daughter's life and continues to provide services for her recovery.
Please be thankful for your children every day even when they drive you crazy and all you want is a moment's peace. Please be thankful now, when you don't need to be. Please snuggle your kids more than you think you need to. You never know when you will wish so hard just to be able to hold your baby. Please give people a break, even when they don't deserve it. That is when they need it more than ever. Don't judge anyone too harshly, you never know when someone is having the worst day of their lives. Be thankful every day!
Happy Thanksgiving!
GO ALY!
Monday, November 5, 2012
Daddy's Letter
October 21, 2012
Aly/Alex/Alexandra,
Hi! It's your dad here. I can't believe you are already a whole year old! It seems like just yesterday that you were just a little speck of a person who couldn't even eat. Now you're our big, standing, and scooting baby babooshska!
I still remember when you were born, the first thing I did was count your fingers and toes while they were still picking you up. Five on each hand and foot, just like there should be! You had a hard time learning how to latch and eat at first and your mom and I were very worried. I finally got you to eat a bottle of formula. I guess it wasn't very good since after that you ate all your mama milk with no problems!
We love you so much and you have brought such joy to our whole family. You've always been very happy and sweet to everyone. Plus, you were a very healthy baby too! That is, until July. That's when you got very sick and had to go to the hospital. Your mom and I (and everyone else!) were so worried about you and even the doctors weren't sure you'd be ok. It was ok, though, because you are the strongest, bravest person I've ever met. You pulled through and came home in only ten days! I am so proud of you for getting through everything so well. That being said, if you ever scare your mom and I like that again, you are grounded for life! If you ever think your mom and I are being over-protective that is part of the reason. We just love you so much and we appreciate how lucky we are to still have you in our lives!
Recently, just in the last week or so, you have been a little grumpy. We think you are finally starting to get more than just your bottom two teeth. You still are a sweet girl, but you have been having little crying fits. It's been a bit hard to deal with you screaming all night long, but I know you'll get over it.
Anyway, I've been staying home with you for about a month now, and I can't tell you how special it's been. Every day you seem to learn something new, whether it's standing up or banging your toys together or, now, starting to crawl. You were a couple months behind on your development when you got out of the hospital, but with all your therapy (with Beth, Dani, and Eunice) and all the work we do, you are totally blossoming. It does my heart good to see your progress every day. You also need to know how amazing your mom has been through all this. It's been very hard for her to go to work everyday while I get to hang out with you. When you get old enough to read and understand this, please thank her for all the sacrifices she has made for you and me. You have an amazing mother and are very, very lucky.
Mostly, though, I want to thank you. You are truly the best thing that has ever happened not only to me, but our entire family. I've never seen grandparents (and great-grandparents) who love their grandchild as much as you. You have a magic about you and you just make people happy. You are destined for great things, Alexandra. You just need to work hard and believe in yourself! You are only turning one and you have already proven yourself to be brave, strong, kind, smart, inquisitive, and unbelievably adorable! You are here for a purpose and I can't wait to see what it is. Your journey has begun (and is a year into it already!) and I will be here to support you any way I can. I am always in your heart, child. I love you more than I can ever tell you. HAPPY BIRTHDAY ALY!
Love,
Dad
Monday, October 22, 2012
One
Dear Aly,
You are one year old today. I plan on writing your normal 12 months letter where I talk about all the stuff you've done in the last month, and all the stuff that is going on, but this is a special one year old letter. I just wanted to tell you that I love you more than I think you will ever know. At least not until you have a child of your own. Having a baby changes something, I don't know but I feel like its kind of narcissistic to love something you made so much, and yet here we are. I just wanted to tell you Aly, that your mother will always be your biggest fan. I will always be cheering for you, I will always want you to be happy. I will walk backward through hot coals blindfolded for you, I will throw myself into shark infested freezing water if you need me too. I want you to grow up happy, secure, positive, polite, thankful, thoughtful, selfless, but I will take you however you end up. It is my job to raise you right and just know that you are going to be who you are. I will always fight for you my love. I will always have time for you. I will always choose you over anything else.
I do worry Aly, about the future. I worry that you will always be just a little behind. I worry that you will be the weird kid, or labeled a loser, or a loner, or that you will be shy like me and have trouble making friends. I worry that you will have trouble in school. I worry that I won't know how to help you. I worry that I will say the wrong things. I worry that I will hurt your feelings when I try to make you feel better. I worry that I will always worry too much!
While I will worry about you, I want to make sure you get to experience everything good in life. I will let you play outside. I will let you go sledding in deep snow, I will let you play on the swings, and I will become an expert in any sport you wish to try. I won't try to push you into any one thing. I will let you choose your own music, movies, tv shows and even let you have a crush on the next Justin Bieber teen idol that comes along. I will let you make mistakes and I will help you learn from them.
I will make sure you are protected too. I will do everything I can to keep you safe when I can. I will try to understand that you will get hurt, but I will always be there to make it better.
You are an amazing little girl. You have taught me so much in just a year. You have challenged me and rewarded me and shown me so many things I never knew about myself. You are the best thing that ever happened to me. Please know that you are so, so loved. I never knew a baby that was as loved as you are. Never doubt how we feel about you. You have so much more life to live and you have so much more to show us.
There will be bumps in the road, there may be hard times, sad times, we may lose people we love along the way. Just know that you will always have my support. You will always have love, and strength. You may not always think so, but know this: You Are Enough!
Happy birthday my beautiful daughter! Here's to many more years!
Love always, Mom
You are one year old today. I plan on writing your normal 12 months letter where I talk about all the stuff you've done in the last month, and all the stuff that is going on, but this is a special one year old letter. I just wanted to tell you that I love you more than I think you will ever know. At least not until you have a child of your own. Having a baby changes something, I don't know but I feel like its kind of narcissistic to love something you made so much, and yet here we are. I just wanted to tell you Aly, that your mother will always be your biggest fan. I will always be cheering for you, I will always want you to be happy. I will walk backward through hot coals blindfolded for you, I will throw myself into shark infested freezing water if you need me too. I want you to grow up happy, secure, positive, polite, thankful, thoughtful, selfless, but I will take you however you end up. It is my job to raise you right and just know that you are going to be who you are. I will always fight for you my love. I will always have time for you. I will always choose you over anything else.
I do worry Aly, about the future. I worry that you will always be just a little behind. I worry that you will be the weird kid, or labeled a loser, or a loner, or that you will be shy like me and have trouble making friends. I worry that you will have trouble in school. I worry that I won't know how to help you. I worry that I will say the wrong things. I worry that I will hurt your feelings when I try to make you feel better. I worry that I will always worry too much!
While I will worry about you, I want to make sure you get to experience everything good in life. I will let you play outside. I will let you go sledding in deep snow, I will let you play on the swings, and I will become an expert in any sport you wish to try. I won't try to push you into any one thing. I will let you choose your own music, movies, tv shows and even let you have a crush on the next Justin Bieber teen idol that comes along. I will let you make mistakes and I will help you learn from them.
I will make sure you are protected too. I will do everything I can to keep you safe when I can. I will try to understand that you will get hurt, but I will always be there to make it better.
You are an amazing little girl. You have taught me so much in just a year. You have challenged me and rewarded me and shown me so many things I never knew about myself. You are the best thing that ever happened to me. Please know that you are so, so loved. I never knew a baby that was as loved as you are. Never doubt how we feel about you. You have so much more life to live and you have so much more to show us.
There will be bumps in the road, there may be hard times, sad times, we may lose people we love along the way. Just know that you will always have my support. You will always have love, and strength. You may not always think so, but know this: You Are Enough!
Happy birthday my beautiful daughter! Here's to many more years!
Love always, Mom
Wednesday, October 3, 2012
Eyes Wide Shut
Just wanted to give my loyal readers a quick little update on the “Go-ings of Aly” haha. She is making some progress with her gross motor skills and has mastered the ability to go from laying to sitting. She has also figured out how to stand up in her crib and has freaked out her dad with that trick a couple times lately. She still doesn’t do things like bang toys together or clap, but she likes when you model it for her or make her do it. I’m hoping she’s just on the verge of figuring it out. (Edit: Daddy just sent me a video of her banging together like a pro!) She also has started babbling like crazy, not just nonsense but more consonants sounds, especially “Da.” I think “Dada” is her first word. Everything is “Dadada” so I don’t feel left out! Although, she seemed like she said, ”Hi” a couple times starting at like 3 months old.
Aly did give us a little bit of scare last Saturday morning. She woke me up crying at 6:30 am. It was not her normal, “I’m up Mama, come get me,” cry, it was more a, “I’m not happy, I need my Mama now!” cry. She was acting really grumpy and not wanting to open her eyes. This is concerning because she is usually in a good mood in the morning. I changed her, fed her, and put her on the floor to play. She kept rubbing her eyes and then crying, but then would act completely normal, so I wasn’t sure what was wrong. I thought maybe she was having an allergic reaction, or possibly a hair or dirt was in her eyes. She just wasn’t acting like her normal sweet self. After texting back and forth with Ben, we decided to call her Doctor. Yes, we are those parents, we are going to end up on a first name basis with the Pediatrician’s office at some point. She has been to the regular Pediatrician 2x since she got out of the hospital, once for not pooping for 6(!) days and then now for this. Turns out she had a pretty good sized scratch on her eye. Dr. Marriott (I know!) put some florescent drops in her eye and held a black light over and we could see it pretty clearly. He said it would heal on its own, but gave us some drops to help keep it clean. Getting the drops in her eyes is a bit tricky, but she seems to be feeling better and is not rubbing her eyes as much. We have cut this girl’s nails but they are still sharp little things! Hopefully she learns not to do that.
So that was fun, a little bit scary for me. I had flashbacks to when she was in the hospital. She looked like a zombie, with her eyes half open, and then she stopped opening her eyes altogether. We never were told exactly what was going on, they thought it might be the pressure in her head holding her eyes closed. Plus, everyone keeps commenting on her eyes and how she always looks cross-eyed and might have a lazy eye. She has had her eyes checked twice already and both times they have been fine. She does have another Ophthalmologist visit at the end of October, so we’ll find out more then.
Right now, a major source of frustration is communication with her Neurologist. We are stuck playing a game of tag with her, we’ll call her, leave a message, then get a message from her, then talk to a receptionist who says a third thing. We were hoping to have a new EEG done to evaluate whether she can wean off her seizure meds, and they keep prolonging the process. I was hoping we could be done with it by the end of the year. Now, we’ll have to wait until January.
I can’t believe my little girl is going to be 1 year old. This has been the hardest year of my life, no doubt. Being a mom is the hardest and yet the easiest thing I have ever done. Having Aly has changed and challenged everything I thought I knew. I am so excited to have her 1st birthday party and celebrate the first year of her life. She deserves it.
GO ALY!
Saturday, September 22, 2012
11 Month Letter
Happy 11 Months Baby Baboosh!. Today is also Gr Gr Paul's birthday. You sat in his lap and had cake. You like everything we feed you. Sweet, sour, salty, we haven't tried spicy but I'm sure you would like it too. You are doing so well. You are finally able to push yourself to sitting from laying down. You are getting really close to crawling, you get up on your hands and knees and rock, but you haven't tried to move yet. You can stand with support and you are learning to move from sitting to standing, knees to stand and all kinds of transitions. These are very important things your physical therapist wants you to learn. You are talking a lot, but not saying any actual words. We think you are on the verge of figuring it out. You are doing well with Daddy at home and you are still taking two naps a day and sleeping from about 7 pm to 7 am with 1 or 2 wake-ups per night. You eat about two bottles of milk and then several baby food meals a day. You still wear 9 month clothing and size 3 diapers. On your last neurologist visit you weighed 16.9 pounds and you were just under 28 inches tall. You are always very happy in the mornings. You are very friendly and you suck your thumb whenever you are tired. No more binkies for you. We are trying to get you to start drinking from a sippy cup instead of a bottle. You go to physical and occupational therapy 2x a month, and your therapists love you and say you are one of their favorites. We can't believe in just another month you will be one year old. The time has flown by! You are a miracle baby girl. We are so happy we have you and we love you always and forever
Love,
Mama
Friday, September 14, 2012
Why?
Wish I had something of importance to write about. We're holding steady. Ben has been doing the stay at home dad thing for two weeks now, and I think he's getting the hang of it. I think he is also beginning to understand that Aly is a full time job! He works all weekend and tries to get as many hours as he can, so Aly and I get a lot of one on one time on Saturday and Sunday. Still can't believe how much my life has changed in only a couple of months.
I have bad days here and there. I try to focus on the good, but some days I still have trouble. I think I will need some time to process things. In a way, I feel like I am grieving something, but I'm not sure how to grieve something I'm not sure I lost. There is still so much that is unknown. There is so much I am still worrying and wondering about. I know it's not good to worry about something you can't control, but the way my mind works, is that I only worry about things I can't control.
I still feel that life is too unfair. I still feel that Aly didn't deserve anything that happened to her. I still wish I could find some comfort in something bigger than myself. Once again, I find my faith (or lack thereof) tested. I don't know if I can or if I want to believe in God.
Aly still has physical therapy and occupational twice a month, plus early intervention and she will be seeing her neurologist often and she has some tests coming up. She is still behind. It still stings when I see a baby younger than her doing something she can't do though. I know I focus too much on the stuff around me and what other people are thinking and doing, but I can't help it. I still say why me? Why us? Why Aly?
Someday I hope to move past needing to know why. But today it still bothers me. Today I want to know why and what. Today I worry about the future, even though it may not need worrying about.
GO ALY!
I have bad days here and there. I try to focus on the good, but some days I still have trouble. I think I will need some time to process things. In a way, I feel like I am grieving something, but I'm not sure how to grieve something I'm not sure I lost. There is still so much that is unknown. There is so much I am still worrying and wondering about. I know it's not good to worry about something you can't control, but the way my mind works, is that I only worry about things I can't control.
I still feel that life is too unfair. I still feel that Aly didn't deserve anything that happened to her. I still wish I could find some comfort in something bigger than myself. Once again, I find my faith (or lack thereof) tested. I don't know if I can or if I want to believe in God.
Aly still has physical therapy and occupational twice a month, plus early intervention and she will be seeing her neurologist often and she has some tests coming up. She is still behind. It still stings when I see a baby younger than her doing something she can't do though. I know I focus too much on the stuff around me and what other people are thinking and doing, but I can't help it. I still say why me? Why us? Why Aly?
Someday I hope to move past needing to know why. But today it still bothers me. Today I want to know why and what. Today I worry about the future, even though it may not need worrying about.
GO ALY!
Tuesday, September 4, 2012
Miracle Child
Yesterday, I started writing an extremely negative post. I was feeling very sorry for myself. Very jealous of other people and their "easy" lives. Aly's doctor visit today brought me back to earth.
I am lucky. I am blessed. My baby is doing much better than expected. Things could be so, so much worse. Instead of wasting my energy being jealous of everyone else and feeling punished, how about I appreciate that my daughter is in the business of making doctors scratch their heads and eat their words.
We found out that another baby had a similar situation at the hospital, with similar symptoms. They were worried an infection was going around. It wasn't an infection. Sounds like the other baby had a much worse outcome than Aly.
This doesn't mean I'm not gonna feel angry, or jealous or like we have been treated unfairly by God. But this does mean that I'm going to try harder to keep things in perspective.
I still have my baby. She is my heart outside of my body. She is happy. She is thriving. She is proving them all wrong. She is amazing. She has such a capacity for love. She trusts so readily. She forgives. She smiles and I swear the entire room lights up. These are the things I need to remember when I am asking, "Why me?"
What a difference a day makes.
When Aly was in the hospital, all I wanted to do was hold my baby. When I am feeling especially low, that's all I need to do, and she reminds me what is really important. That I can still hold my baby. And that means everything.
GO ALY!
I am lucky. I am blessed. My baby is doing much better than expected. Things could be so, so much worse. Instead of wasting my energy being jealous of everyone else and feeling punished, how about I appreciate that my daughter is in the business of making doctors scratch their heads and eat their words.
We found out that another baby had a similar situation at the hospital, with similar symptoms. They were worried an infection was going around. It wasn't an infection. Sounds like the other baby had a much worse outcome than Aly.
This doesn't mean I'm not gonna feel angry, or jealous or like we have been treated unfairly by God. But this does mean that I'm going to try harder to keep things in perspective.
I still have my baby. She is my heart outside of my body. She is happy. She is thriving. She is proving them all wrong. She is amazing. She has such a capacity for love. She trusts so readily. She forgives. She smiles and I swear the entire room lights up. These are the things I need to remember when I am asking, "Why me?"
What a difference a day makes.
GO ALY!
Thursday, August 30, 2012
Ch-Ch-Changes
This week we have had a little bit of a break. Aly has not had any Doctor or therapy appointments for the entire week. Of course she will make up for it next week by having three. Seems to be the way things work. All or nothing.
Since Aly was 3 months old and I went back to work, she has been going to daycare. Our daycare provider is amazing and we love her. I believe her quick action the day Aly had the first seizure is the reason she is still with us. She visited Aly in the hospital and made sure we had everything we needed. We also love how close she lives to us.
After Aly got out of the hospital we decided to have her stay with her Grandma for a few weeks so she would get some one on one attention while she was still getting re-acclimated to being out of the hospital. The plan was to send her back to daycare the last week of August when her Grandma goes back to school (she's a teacher).
Unfortunately for all involved, we're not going to be able to take her back to daycare. We agonized over the decision, whether to find another daycare or to figure out a way for her to stay home with us. We had some extra stuff to consider, if she would do well in a regular daycare, would one take her, how much more would it cost...etc. Well, we added it all up and something had to give. So Daddy decided his job was the easiest to sacrifice and he will be quitting his full time job to stay home during the day with Aly. He will still work part time on nights and weekends. We did not make this decision lightly. We felt it was in Aly's best interest and that's kind of what it all comes down to. We live in a world where certain college degrees are better to have and while Ben already has a Bachelor's, he is not able to do much with it. He was planning on going back to school next year anyway. So this just all kind of happened in a matter of weeks. It will be an adjustment on all ends.
We are lucky that I have such a good job with good benefits and that we don't have a huge mortgage or loans to pay off. Yes, money is going to be extra super tight. Even though we are saving on daycare, we are still losing an income and we are going to be facing some large medical bills. We also have very supportive family and friends that have been able to step in and help in the mean time. Each Grandma has been on Aly babysitting duty this month and they have been so much help.
We have a busy week coming up. Aly has her much anticipated Neurology follow-up with Dr. Betsy. I have a ton of questions that I need to gather up. She will start having her normal Early Intervention visits a couple times a month but she will be able to space out her physical and occupational therapy visits. She has made a lot of progress since she has been home. I would say she is almost back to where she started. Now she has to work on doing the age-appropriate things a normal 10 month old would do. I have to believe having Daddy home to work with her and take her to her rehab will help her even more.
GO ALY!
Since Aly was 3 months old and I went back to work, she has been going to daycare. Our daycare provider is amazing and we love her. I believe her quick action the day Aly had the first seizure is the reason she is still with us. She visited Aly in the hospital and made sure we had everything we needed. We also love how close she lives to us.
After Aly got out of the hospital we decided to have her stay with her Grandma for a few weeks so she would get some one on one attention while she was still getting re-acclimated to being out of the hospital. The plan was to send her back to daycare the last week of August when her Grandma goes back to school (she's a teacher).
Unfortunately for all involved, we're not going to be able to take her back to daycare. We agonized over the decision, whether to find another daycare or to figure out a way for her to stay home with us. We had some extra stuff to consider, if she would do well in a regular daycare, would one take her, how much more would it cost...etc. Well, we added it all up and something had to give. So Daddy decided his job was the easiest to sacrifice and he will be quitting his full time job to stay home during the day with Aly. He will still work part time on nights and weekends. We did not make this decision lightly. We felt it was in Aly's best interest and that's kind of what it all comes down to. We live in a world where certain college degrees are better to have and while Ben already has a Bachelor's, he is not able to do much with it. He was planning on going back to school next year anyway. So this just all kind of happened in a matter of weeks. It will be an adjustment on all ends.
We are lucky that I have such a good job with good benefits and that we don't have a huge mortgage or loans to pay off. Yes, money is going to be extra super tight. Even though we are saving on daycare, we are still losing an income and we are going to be facing some large medical bills. We also have very supportive family and friends that have been able to step in and help in the mean time. Each Grandma has been on Aly babysitting duty this month and they have been so much help.
We have a busy week coming up. Aly has her much anticipated Neurology follow-up with Dr. Betsy. I have a ton of questions that I need to gather up. She will start having her normal Early Intervention visits a couple times a month but she will be able to space out her physical and occupational therapy visits. She has made a lot of progress since she has been home. I would say she is almost back to where she started. Now she has to work on doing the age-appropriate things a normal 10 month old would do. I have to believe having Daddy home to work with her and take her to her rehab will help her even more.
GO ALY!
Friday, August 24, 2012
10 Months and Other Stuff
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| The Happy 10 Month-er |
Aly turned 10 months on Wednesday. I write her a letter for every month about what is going on. Our lives have changed so much in the last month, I can't believe where we started, where we were then, and where we are now. Next month things will have changed even more. Some days I just hold Aly and laugh and kiss her and marvel that I have a ten month old baby. Some days (like today) I just hold her and cry a little. Then she laughs at me and I forget what I was crying about. Today she has decided measuring cups and spoons are her new favorite toys. She will play with the everyday things like cups and spoons much longer than any fancy baby toy.
Here is the ten month letter:
Dear Aly,
You are ten months old today! I can't believe how fast the time is passing. On your last month birthday you were still in the hospital. Now you are home and doing so well. You are doing PT or OT at least once a week and you have Early Intervention planned for at least once a month as well. You are making progress. You can scoot again like crazy and you can sit up by yourself for longer. They are making sure you don't neglect your left hand. You have some great doctors and therapists working to get you all better. You are finally starting to wear 9 month clothes. You are in size 3 diapers for the most part. You weighed about 15 lbs, 12 oz at your last dr. appointment, so you are gaining some weight back. You are eating lots of solids now, you still like everything. You have been baby sat by Grandma Roxann for a few weeks, and now Grandma Robyn is taking a turn. You are always in a good mood in the mornings. You wake up once a night to eat. Sometimes you won't take your two naps and then we have to deal with a grumpy gina before bed. You had your eyes and ears tested today and both were fine. You had a follow-up MRI a week ago and that went well. People are still sending you presents, thinking about you and cheering for you. You have brought nothing but joy and love to everyone. Mama and Dada love you so much little boosh. We are so happy to be your parents.
Love always,
Mama
You are ten months old today! I can't believe how fast the time is passing. On your last month birthday you were still in the hospital. Now you are home and doing so well. You are doing PT or OT at least once a week and you have Early Intervention planned for at least once a month as well. You are making progress. You can scoot again like crazy and you can sit up by yourself for longer. They are making sure you don't neglect your left hand. You have some great doctors and therapists working to get you all better. You are finally starting to wear 9 month clothes. You are in size 3 diapers for the most part. You weighed about 15 lbs, 12 oz at your last dr. appointment, so you are gaining some weight back. You are eating lots of solids now, you still like everything. You have been baby sat by Grandma Roxann for a few weeks, and now Grandma Robyn is taking a turn. You are always in a good mood in the mornings. You wake up once a night to eat. Sometimes you won't take your two naps and then we have to deal with a grumpy gina before bed. You had your eyes and ears tested today and both were fine. You had a follow-up MRI a week ago and that went well. People are still sending you presents, thinking about you and cheering for you. You have brought nothing but joy and love to everyone. Mama and Dada love you so much little boosh. We are so happy to be your parents.
Love always,
Mama
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