Starting out on a positive note, we have been seeing some great progress in the past week in all the "therapies"... Physical, occupational and even speech/eating!
Physically, Evan is just on the verge of crawling, and has become a human rolling pin. He also is learning to reach much better while sitting, propping himself and extending out to get a favorite toy.
In occupational therapy.... Wow, what a difference new toys make! He has been making so many leaps and bounds in his playtime activities and grasping... He's even beginning to learn to put his blocks through the right shaped holes!
The most exciting thing for me is the eating, of course, because we have struggled so much with it. Yesterday, we once again were able to feed him almost 1/2 a jar of baby food. We haven't had this much success since we took the trach out over a month ago. I nearly did my goofy happy dance, I was that happy.
We had his 12 month pediatrician check up and shots on Friday, and he did wonderfully. His weight and height are still on the lower end of the growth charts, but we've been seeing a steady increase, so I'm not particularly worried about it. Hey, he's ON the growth chart! I'm happy with that.
Most helpful of all, we finally got a referral for formal speech therapy to begin. I have been doing what I can when I can, but I will be so happy to have an expert to help guide us, because it's been very slow going.
I hope that he will be eating all his meals orally by age 2. I can't say whether that is a realistic goal or not, but it's a starting point, and I need a specific goal to work for. With real therapy on the horizon, I have set this goal with no real reference to how well he will progress... but as I said, it's a good goal to work for and I think it isn't too un-realistic.
Today, we have an appointment to see the pediatric eye specialist, for the multiple issues Evan has had with his eyes. He has the droopy eyelid, which we've noticed getting a little more droopy recently, and the nystagmus (involuntary eye movement), which has improved. Then there is the most important question: Does he have cortical visual impairment? I've been making mental notes as it relates to his behavior and eyesight. I'm still unsure whether his problems stem from this possible impairment, or some other issue that has not been diagnosed yet/ All I do know is that he IS different from other toddlers his age, and even infants younger than him. I've been wracking my brain, and googling everything I could in an effort to be as proactive as possible, and to execute experiments to see how he reacts in certain situations regarding his vision. According to the eye exams given to him in the hospital, his eyes are pretty normal, other than the drooping eyelid and nystagmus. But there are other issues that can cause some of the same "symptoms" and behaviors that I've been noting with Evan, and it's very important to me that we diagnose whatever it is correctly, so we can provide the proper sort of support necessary. I've been doing okay just "winging it", but it will ease my worries to have a specific reason for the odder aspects of his behavior when it comes to visual things.
Tomorrow is also a big day. We'll be going in for Evan's hernia repair. This will be the 7th time under anesthesia, and his 5th actual surgery. We will be at the hospital at the very least for a full day, if not over night for his recovery... It pretty much depends on how well he's doing afterward.
Finally, let's talk about the "sleepless" portion of the title. My sweet little guy has been waking up crying almost every night, and then staying awake for anywhere from 1 to 3 hours. Last night, for example, he woke up at 2:30 and did not go back to sleep until just after 5 AM. I managed to catch a nap or two during this time on the mattress we have in his room. But after he yelled again at 4:50 this morning..... well, I was awake. Last week, we saw a total of 5 nights where he woke up at 1:30 almost exactly every night, crying and nearly inconsolable. I'm guessing that it has to do with his teething.. he's cutting one of his lower incisors, another incisor is peeking up just below the surface, and I could've sworn that I saw a molar making it's way up too. So we've been treating his teething pain as much as possible. I also think it has something to do with separation anxiety as well. He's been VERY clingy when I pick him up those nights he wakes up, and refuses to go back to bed. He's fine as long as he's being held, but at the smallest hint I might be putting him back in his crib, he SCREAMS. Not even laying down with him on the mattress in his room works. By the time he's asleep, I am wide awake, so I've been quite the early bird lately.
That is why I've been running a couple of hour's sleep each night for the past week and a half. BUT! I have to say as exhausting as it can be, I'm so thankful he's doing something that falls into the category of "normal" for his age.
I will be updating tomorrow with how his hernia repair goes, complete with pictures and details.
Monday, August 13, 2012
Tuesday, August 7, 2012
Monday, August 6, 2012
Birthday PAR-TAY
What a big weekend!
Saturday, we prepared our bags and left the house at 12:30 to make the 2 hour, 15 minute trip to my parents. We arrived just before Evan's 3 PM feed, which I set up, and we settled Evan in and visited with my parents for a couple of hours. At 5 PM, Evan was playing happily on the floor, while I hovered anxiously, not wanting to leave for mine and Carl's date.
I finally managed to tear myself away, after repeating instructions and advice that was most likely unnecessary, and Carl and I whisked ourselves away for our big night out on the town (i.e- going out to eat).
We checked into the hotel, then chose to drive the 30 minutes to the nearest "nice" restaurant . We were delayed longer than I wanted, due to the first restaurant we went to serving me the wrong meal and Carl's shrimp tasting like it was dumped in a dirty lake just prior to serving it. Since I didn't care to wait for my meal while Carl made an effort to even eat his, I took the opportunity to say, "Nah, we're leaving."
The second restaurant was better, but by the time we got our food and were halfway done, Carl and I were both wiggling in our seats, and the conversation centered solely on Evan and how he was doing. Carl wolfed down his meal in record time, while I asked for a to-go box and the check, and then we high-tailed it back to my parent's home.
All in all, we were back by 7:40, a whole 2 hours and 40 minutes after leaving. It was fun, but I was pretty happy to be back with my boy.
After that, we spent a little more time with my parents, allowing Evan to nap, and then loaded him up to get him settled into the hotel room. Surprisingly, he was quite happy to get a bath in an unfamiliar bathroom, get his breathing treatment, and settle into the hotel-provided crib. It took him a little while to get to sleep, but after the late nap, and the excitement of the day, we expected it.
The next morning rolled around, and Evan slept great, only waking up once very briefly (5 minutes) around 3 AM. We actually got to sleep in for once, until 7:50. Woo-hoo!
We proceeded to arrange our morning, getting Evan ready, his breathing treatment and 1st feed of the day, getting dressed and doing his g-button cares. We helped ourselves to the complimentary breakfast, packed, got ourselves ready, and loaded everything up in the car shortly before 10 AM, and headed once again to my parent's house.
There, we allowed some time for Evan to get his mid-morning nap, before his party at 11, while we chatted.
The party was such a great success! I mean, it's a one-year-old's party, so it's not as exciting (or exhausting) as older kids', but it had some really great moments, and so many family members were there to meet and greet Evan, which warmed my heart. He had some good times opening his gifts (and some bad), but he really was very good.
Everyone did spectacular with their gifts, we really couldn't have asked for more, and I was so, so happy that so many people were there to celebrate Evan.
It was good seeing family members, some of which I haven't seen in over a year.
Finally, around 12:30, we loaded up the gifts and Evan, set his feed to start and started making our way back home. As expected, even though Evan was sooooo worn out, he didn't fall asleep in the car. He never does. We got home at 3, set up his 3 o'clock feed, changed his diaper, put him in a comfy romper, and he promptly fell asleep on his mat within minutes.
Whew.
After taking an hour to relax, I ventured out to get groceries and run an errand or two, and came back with something easy for dinner. Carl had a lot of fun getting Evan's toys out and setting them up, and playing with them one by one.
Once I clean the chaos that is our living room right now, I'll take some pictures of him playing with his new toys and post. Also, we have some birthday party photos to share. Soon.
Saturday, we prepared our bags and left the house at 12:30 to make the 2 hour, 15 minute trip to my parents. We arrived just before Evan's 3 PM feed, which I set up, and we settled Evan in and visited with my parents for a couple of hours. At 5 PM, Evan was playing happily on the floor, while I hovered anxiously, not wanting to leave for mine and Carl's date.
I finally managed to tear myself away, after repeating instructions and advice that was most likely unnecessary, and Carl and I whisked ourselves away for our big night out on the town (i.e- going out to eat).
We checked into the hotel, then chose to drive the 30 minutes to the nearest "nice" restaurant . We were delayed longer than I wanted, due to the first restaurant we went to serving me the wrong meal and Carl's shrimp tasting like it was dumped in a dirty lake just prior to serving it. Since I didn't care to wait for my meal while Carl made an effort to even eat his, I took the opportunity to say, "Nah, we're leaving."
The second restaurant was better, but by the time we got our food and were halfway done, Carl and I were both wiggling in our seats, and the conversation centered solely on Evan and how he was doing. Carl wolfed down his meal in record time, while I asked for a to-go box and the check, and then we high-tailed it back to my parent's home.
All in all, we were back by 7:40, a whole 2 hours and 40 minutes after leaving. It was fun, but I was pretty happy to be back with my boy.
After that, we spent a little more time with my parents, allowing Evan to nap, and then loaded him up to get him settled into the hotel room. Surprisingly, he was quite happy to get a bath in an unfamiliar bathroom, get his breathing treatment, and settle into the hotel-provided crib. It took him a little while to get to sleep, but after the late nap, and the excitement of the day, we expected it.
The next morning rolled around, and Evan slept great, only waking up once very briefly (5 minutes) around 3 AM. We actually got to sleep in for once, until 7:50. Woo-hoo!
We proceeded to arrange our morning, getting Evan ready, his breathing treatment and 1st feed of the day, getting dressed and doing his g-button cares. We helped ourselves to the complimentary breakfast, packed, got ourselves ready, and loaded everything up in the car shortly before 10 AM, and headed once again to my parent's house.
There, we allowed some time for Evan to get his mid-morning nap, before his party at 11, while we chatted.
The party was such a great success! I mean, it's a one-year-old's party, so it's not as exciting (or exhausting) as older kids', but it had some really great moments, and so many family members were there to meet and greet Evan, which warmed my heart. He had some good times opening his gifts (and some bad), but he really was very good.
Everyone did spectacular with their gifts, we really couldn't have asked for more, and I was so, so happy that so many people were there to celebrate Evan.
It was good seeing family members, some of which I haven't seen in over a year.
Finally, around 12:30, we loaded up the gifts and Evan, set his feed to start and started making our way back home. As expected, even though Evan was sooooo worn out, he didn't fall asleep in the car. He never does. We got home at 3, set up his 3 o'clock feed, changed his diaper, put him in a comfy romper, and he promptly fell asleep on his mat within minutes.
Whew.
After taking an hour to relax, I ventured out to get groceries and run an errand or two, and came back with something easy for dinner. Carl had a lot of fun getting Evan's toys out and setting them up, and playing with them one by one.
Once I clean the chaos that is our living room right now, I'll take some pictures of him playing with his new toys and post. Also, we have some birthday party photos to share. Soon.
Wednesday, August 1, 2012
Post-birthday
We had a wonderful happy birthday with Evan yesterday. Of course, his party isn't until this weekend, but we still had a great day.
My sweet boy woke up to me singing "happy birthday", which he thought was pretty cool. We then proceeded to have a pretty typical day, except I had a job interview in the afternoon. Dad took off of work early to watch Evan and I actually had a good time at the interview.
I didn't think his birthday would affect me so much, but I couldn't help looking at the clock at 1:40, and thinking to myself, "Evan was born at 1:36 exactly 1 year from today".
I couldn't stop smiling all day, and I sang happy birthday to Evan so many times, he probably thinks its his new theme song.
I can't explain it- I just felt incredibly content, happy, and SO PROUD. I had to laugh, because we were watching the Olympics, and seeing the parents when their child won gold.... Well, I was feeling that EXACT same pride and joy for Evan turning a year old.
Just stop and realize- we were told he had a 30-40% chance of not making it when he was first born. The fact that he is now a happy and mostly healthy one year old brings tears to my eyes.
And boy, do I mean he's happy!
Dad and I have so much fun playing with him. He gets so excited and playful, and is THRILLED to play a game.
He has such a big personality, and I love it.
My sweet boy woke up to me singing "happy birthday", which he thought was pretty cool. We then proceeded to have a pretty typical day, except I had a job interview in the afternoon. Dad took off of work early to watch Evan and I actually had a good time at the interview.
I didn't think his birthday would affect me so much, but I couldn't help looking at the clock at 1:40, and thinking to myself, "Evan was born at 1:36 exactly 1 year from today".
I couldn't stop smiling all day, and I sang happy birthday to Evan so many times, he probably thinks its his new theme song.
I can't explain it- I just felt incredibly content, happy, and SO PROUD. I had to laugh, because we were watching the Olympics, and seeing the parents when their child won gold.... Well, I was feeling that EXACT same pride and joy for Evan turning a year old.
Just stop and realize- we were told he had a 30-40% chance of not making it when he was first born. The fact that he is now a happy and mostly healthy one year old brings tears to my eyes.
And boy, do I mean he's happy!
Dad and I have so much fun playing with him. He gets so excited and playful, and is THRILLED to play a game.
He has such a big personality, and I love it.
Monday, July 30, 2012
Tomorrow
Tomorrow is my little man's 1st birthday, and I find myself thinking back to the days before and after his birth.
I just can't believe it has been year.
I remember laying back in my chair while I was pregnant, and feeling him move and just KNOWING he was the most amazing person. I talked to him, rubbed my belly, and thought about him constantly. Wanting to see him so much, but scared, too.
The day he was born, I had so much hope, but I was so worried. It felt right to hope, I felt like everything in the end would be okay.
After he was born, it was a struggle to maintain my composure. I remember the second night in the hospital, I was a mess.
But it still felt right to hope.
That first week after he was born was an incredible experience, one I never wish to repeat, but at the same time I'll never regret it. So much was out of our hands. If you know me, you know one of my biggest flaws is my persistent need to do everything myself, no matter how much I'm over my head. It was so hard to be unable to do anything.
5 days after my c-section, if anyone had been around to see, they would have thought I was crazy. I did laundry and cleaned the kitchen and bathroom floors on my hands and knees, just to have something to do. I wasn't cleared to drive just yet, so I couldn't go to the hospital to see Evan while Carl was at work. But by golly, I was going to accomplish something.
And now, a year later, I have my hands full, and my heart is happy. Evan has overcome more obstacles than most people will ever experience in just his first year. What can I say? He's my hero, he is my inspiration, and I know that my life is forever enriched by having such an amazing child.
I cant help but think I am incredibly lucky to be given the opportunity to raise him, to love him, and to see him grow up. Everything we've been through, although difficult at the time, has been just a side-note in comparison to the great pride, joy and admiration I have for my son.
He makes every day just a little brighter. Who could ask for more?
I just can't believe it has been year.
I remember laying back in my chair while I was pregnant, and feeling him move and just KNOWING he was the most amazing person. I talked to him, rubbed my belly, and thought about him constantly. Wanting to see him so much, but scared, too.
The day he was born, I had so much hope, but I was so worried. It felt right to hope, I felt like everything in the end would be okay.
After he was born, it was a struggle to maintain my composure. I remember the second night in the hospital, I was a mess.
But it still felt right to hope.
That first week after he was born was an incredible experience, one I never wish to repeat, but at the same time I'll never regret it. So much was out of our hands. If you know me, you know one of my biggest flaws is my persistent need to do everything myself, no matter how much I'm over my head. It was so hard to be unable to do anything.
5 days after my c-section, if anyone had been around to see, they would have thought I was crazy. I did laundry and cleaned the kitchen and bathroom floors on my hands and knees, just to have something to do. I wasn't cleared to drive just yet, so I couldn't go to the hospital to see Evan while Carl was at work. But by golly, I was going to accomplish something.
And now, a year later, I have my hands full, and my heart is happy. Evan has overcome more obstacles than most people will ever experience in just his first year. What can I say? He's my hero, he is my inspiration, and I know that my life is forever enriched by having such an amazing child.
I cant help but think I am incredibly lucky to be given the opportunity to raise him, to love him, and to see him grow up. Everything we've been through, although difficult at the time, has been just a side-note in comparison to the great pride, joy and admiration I have for my son.
He makes every day just a little brighter. Who could ask for more?
Monday, July 23, 2012
The work thing
Ever since Evan has had his trach removed, I have been looking for work again. It has nearly been a year since I left work (when Evan was born), and I have gotten to spend 4 months at home with him, one of which was without a trach or oxygen.
We've been very fortunate to get by on just my husband's income, but the financial crunch is starting to hurt a bit.
So I've placed my application with a couple of good leads, and hope for the best.
I admit that the thought of putting Evan in daycare is both exciting and nerve-wracking for me. Exciting, because he'll get to experience new things, to see other children on a daily basis, and have the opportunity to learn new things under the guidance of others. It's nerve-wracking because I barely want to leave him in the care of anyone else, including family. I'll miss my boy, and miss the time we spend together daily.
For myself, I have mixed emotions, as well. On one hand, I will really enjoy the mental stimulation of working again. I miss the interaction with others and the feeling of accomplishment at the end of a good day's work. On the other hand, OH WOW I'M GOING TO MISS BEING WITH EVAN SO MUCH!
The main thing that helps me is that lately Evan has been indicating he wants to explore more of his world, rather than be content to let it come to him. He wants to be picked up and walk around the house. He enjoys our trips to therapy and the doctor. We took him to the grocery store for the first time this weekend, and really enjoyed all the new stuff to look at and observe. He wants the stimulation of being somewhere new or previously unexplored.
So I think he will enjoy the new experiences in daycare, although I know he will miss me too. It will take some adjustment on both our parts.
But it will be well worth it in the end.
The main reason we stay at home all the time (beyond trying to prevent him from catching something) is that we're so broke every week. Even a trip to the zoo is outside our price range. Besides, it's so incredibly hot outside that taking him to a park, even early in the morning, is out of the question.
But when fall comes, with cooler temperatures, and me warning a steady paycheck, we look forward to being able to DO things again.
In other news, my little sweet pea has another surgery scheduled for August 14th. It's to repair his inguinal hernia and undescended testicles.
It should only take the day for him to recover enough to come home, so we're not anticipating staying at the hospital for more than a day, possibly overnight.
The good news is, this just might be the last surgery! Unless something happens when we remove the g-button, and it needs help closing, I don't foresee any other surgeries, minor or otherwise.
We are getting ready for Evan's first birthday, just a week and 1 day away. We have so very much to celebrate. Although I will never remember his birthday without reliving those fearful first days when we weren't sure I'd he would pull through, it can never overshadow the fierce pride and love I have for him, and the remembrance of how amazed I was seeing him for the first time. He's simply the most amazing person I've ever encountered. :-)
His actual birthday party will be at my grandparent's in my hometown 2 hours away on August 5th. I am looking forward to showing him off a little. No wires, no oxygen, no ventilator, and only the feeding tube.... It's going to feel good to have him adored by family, just like any other child.
It's been a long time coming.
We've been very fortunate to get by on just my husband's income, but the financial crunch is starting to hurt a bit.
So I've placed my application with a couple of good leads, and hope for the best.
I admit that the thought of putting Evan in daycare is both exciting and nerve-wracking for me. Exciting, because he'll get to experience new things, to see other children on a daily basis, and have the opportunity to learn new things under the guidance of others. It's nerve-wracking because I barely want to leave him in the care of anyone else, including family. I'll miss my boy, and miss the time we spend together daily.
For myself, I have mixed emotions, as well. On one hand, I will really enjoy the mental stimulation of working again. I miss the interaction with others and the feeling of accomplishment at the end of a good day's work. On the other hand, OH WOW I'M GOING TO MISS BEING WITH EVAN SO MUCH!
The main thing that helps me is that lately Evan has been indicating he wants to explore more of his world, rather than be content to let it come to him. He wants to be picked up and walk around the house. He enjoys our trips to therapy and the doctor. We took him to the grocery store for the first time this weekend, and really enjoyed all the new stuff to look at and observe. He wants the stimulation of being somewhere new or previously unexplored.
So I think he will enjoy the new experiences in daycare, although I know he will miss me too. It will take some adjustment on both our parts.
But it will be well worth it in the end.
The main reason we stay at home all the time (beyond trying to prevent him from catching something) is that we're so broke every week. Even a trip to the zoo is outside our price range. Besides, it's so incredibly hot outside that taking him to a park, even early in the morning, is out of the question.
But when fall comes, with cooler temperatures, and me warning a steady paycheck, we look forward to being able to DO things again.
In other news, my little sweet pea has another surgery scheduled for August 14th. It's to repair his inguinal hernia and undescended testicles.
It should only take the day for him to recover enough to come home, so we're not anticipating staying at the hospital for more than a day, possibly overnight.
The good news is, this just might be the last surgery! Unless something happens when we remove the g-button, and it needs help closing, I don't foresee any other surgeries, minor or otherwise.
We are getting ready for Evan's first birthday, just a week and 1 day away. We have so very much to celebrate. Although I will never remember his birthday without reliving those fearful first days when we weren't sure I'd he would pull through, it can never overshadow the fierce pride and love I have for him, and the remembrance of how amazed I was seeing him for the first time. He's simply the most amazing person I've ever encountered. :-)
His actual birthday party will be at my grandparent's in my hometown 2 hours away on August 5th. I am looking forward to showing him off a little. No wires, no oxygen, no ventilator, and only the feeding tube.... It's going to feel good to have him adored by family, just like any other child.
It's been a long time coming.
Sunday, July 15, 2012
Still working on it
After working so hard and seeing success with eating, it seems like we've gone back to square one on Evan's eating skills ever since the trach was taken out.
I knew it was possible that he would be more sensitive about it, since he is functioning at 100% taste-wise for the first time since he was 3 1/2 months old. But it's still disappointing.
Oh well, I said. We'll get there. Instead of trying yet another day of insisting he take a spoonful of baby food, I dumped some puréed bananas on his tray, gave him a spoon with a little on it, and said "Let's PLAY!"
And wonder upon wonders, he actually managed to taste some and feed himself a spoonful. It was more accident than intent, but I'll take it.
He also is showing off some MAD standing skills. :-)
Just two weeks and two days until his 1st birthday. Time has flown by.
I knew it was possible that he would be more sensitive about it, since he is functioning at 100% taste-wise for the first time since he was 3 1/2 months old. But it's still disappointing.
Oh well, I said. We'll get there. Instead of trying yet another day of insisting he take a spoonful of baby food, I dumped some puréed bananas on his tray, gave him a spoon with a little on it, and said "Let's PLAY!"
And wonder upon wonders, he actually managed to taste some and feed himself a spoonful. It was more accident than intent, but I'll take it.
He also is showing off some MAD standing skills. :-)
Just two weeks and two days until his 1st birthday. Time has flown by.
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