My weeks have been consumed with appointments. A year ago, we knew this would be our life. However, I didn't really understand what that really meant or looked like. I wanted to give an update on what the therapists are saying about the boys.
Physical therapy
Braxton:
We have been working on bearing weight on his hands and knees (in preparation for crawling). He is tucking his knees under his body, but does not stay on his hands unless supported by us. Yesterday, however, I looked over at him and he was on ALL fours. IT was for a second, but I was gleaming! We will keep working on this. He just needs practice in order to strengthen his upper body.
He is moving all over the house using his own style of crawling. Yesterday he and xander were found in the shower! They are starting to act like typical twins....when they can speak, I look forward to hearing them finish each other's sentences.
Xander:
He goes to PT only 2 times a month and only for 30 min. at a time. IT's more of a check up, vs therapy sessions. He is doing everything he should be doing (and more) at 9 months adjusted. He is cruising along the furniture, standing whenever he can reach something to help him pop up, crawls like a mad man, and sits very nicely, unsupported. There's no real concern about his gross motor skills. Fine motor is coming along too...using certain grasps and picking up little baby puffs, etc. is what we are working on now.
Occupational Therapy
Braxton:
we are working on holding bottles on his own. He still wants us to hold it. He really doesn't show any interests right now, to hold it on his own. We are also working on eating chunkier foods, getting his tongue moving laterally to avoid gagging.
Xander:
Xander sees an OT weekly to work mostly on feeding issues. He does NOT like chunky food. In fact more often than not he will gag and throw up. This is directly associated with being in the hospital and intubated. Everything that was oral was negative and now he has a bad association. Also his muscles in his cheeks are tight, and he's not moving his tongue like he should. So the therapist gives us oral motor exercises to help in this area.
Speech:
Both boys are speaking as though a 3-6 month old would. They do not really babble, more of coo's. At this age (9 months adjusted), they should be saying "dada", "mama", "papa", etc. Hard consonant sounds. We are working on it.... They get a hearing test next month to rule out any hearing issues associated to their speech.
Inland Regional Center comes twice a week for 2 hours at a time to work on development in all areas. I love the teacher that comes...she is really great with the kids. They love her too!
All in all, things are moving right along. I have learned to keep my expectations high, while focusing on age appropriate goals. I often look at them as 13 months, and thats not fair to them. I need to remember that they are functioning as a 9 months old.
thanks for your continued support in our boy's lives!
Monday, September 27, 2010
Tuesday, September 21, 2010
Update on Braxton's eyes
Braxton had a recent doctor appointment for his eyes. The first 4 weeks or so, his eyes were looking really good. The last week or so we have noticed him crossing them again. It doesn't seem as bad, but definitely noticeable. sadly....
With that said...the doctor did a thorough exam on Monday and said, that in fact, his eyes were crossing again. Before they measured 50 and now they are measuring 30. (they should be 0, straight). There is some improvement but still effecting his ability to focus clearly.
She dilated his eyes and the eye ball itself looks great. His vision is great too. He is not far sighted or near sighted. She was thinking if he were, then glasses might be helpful in fixing the crossing. So now we go back in 6-8 weeks to see what the measurements are. She is predicting another surgery. This time, instead of cutting the inside muscle, they would cut the outside muscle to compensate the previous procedure.
This is definitely discouraging news....I don't want to see him go through that surgery again. But after seeing his world light up when it was done the first time, it all seemed worth it. So if it takes another surgery for his world to "be straight" again, then I am okay with that. However, I am praying that he will NOT have to go there again. Please pray with us that the muscles will correct themselves.
....more later.....
With that said...the doctor did a thorough exam on Monday and said, that in fact, his eyes were crossing again. Before they measured 50 and now they are measuring 30. (they should be 0, straight). There is some improvement but still effecting his ability to focus clearly.
She dilated his eyes and the eye ball itself looks great. His vision is great too. He is not far sighted or near sighted. She was thinking if he were, then glasses might be helpful in fixing the crossing. So now we go back in 6-8 weeks to see what the measurements are. She is predicting another surgery. This time, instead of cutting the inside muscle, they would cut the outside muscle to compensate the previous procedure.
This is definitely discouraging news....I don't want to see him go through that surgery again. But after seeing his world light up when it was done the first time, it all seemed worth it. So if it takes another surgery for his world to "be straight" again, then I am okay with that. However, I am praying that he will NOT have to go there again. Please pray with us that the muscles will correct themselves.
....more later.....
Friday, September 10, 2010
last few weeks...
braxton is standing momentarily....but still needs a lot of support. xander is walking around this thing--and when he see's a camera, he already knows to smile (caden is STILL working on this!)
First off, don't pay attention to the mess....just shows it gets used, right?! I caught my mom being Grandma of the year again....engaging all the boys in a fun activity. (where was I...out back helping phil measure the lawn. finally getting grass!)
Mr. Cool! He now will pose..but that smile is always hidden!
**mwah!**Caden is at such a fun age...
Xander caught in the act of "exploring". You have to seriously watch him like a hawk, or he will end up hurting himself...badly. No fear, this kid!
Where are you Caden!?
Here I am!
Xander..always thinking UPDATE:
All three boys are the same age right now. weird. (Every year this will happen; for about 6 weeks they will be the same age.) Caden's birthday is right around the corner-- and as it approaches you can see (literally) a transformation of personality. His sentences are getting longer, his reasoning/problem solving skills are getting better. Its so fun to see!Braxton and Xander are doing well, despite a cold they have. They had their one year old check up and doctor was pleased. Both weigh 16 pounds (braxton a few ounces more), and both about 28 in long. We were told to feed them more solids. THe thing is, THEY HATE SOLIDS. Their OT is working on it with them...they gag and squirm and are not interested at all. By december they need to be on mostly solids. eek...we better hustle.
braxton's eyes are getting stronger. He is sitting more independently, but still wobbly. Xander is starting to wave and imitate movements. Very cool to see!
As for momma and daddy. I am teaching at CBU a couple times a week and lovin it! My students are super fast learners and very motivated. (except one who i caught asleep and had to call him out in front of the class). I'm not taking that personal...the class is VERY quiet. they aren't use to it. He was kissin' booty the rest of the class. funny!.
Daddy is doing well...He is keeping busy with RISE and being an awesome dad. He has done a lot of work in the backyard, trying to get it prepped and ready for the sod. (which comes in saturday, and we are all very excited to have a back yard to play in!)
Hope everyone is well!!
love,
THe carmonas!
Monday, August 30, 2010
totally GOD
A friend and her two boys came over the other day. She said, "wow shawna, how do you do it. You always seem like you have such a great attitude."
I had to reassure her that that is not always the case. In fact, more often than not (definitely these last few weeks) I have been struggling big time. I find my self short tempered, lack tons of patience, and have some very selfish thoughts and actions. Life is not pleasant when you are short tempered and have 3 little kids. Nor is life fun when you have zero patience and you have 3 kids to care for.
The stress of this life God gave me has been building over time. It has effected my parenting, my ability to be a good friend, and my ability to be a good wife. Phil and I have had more arguments, and you can just feel the stress and tension in the air. it's crazy what stress does to a person/family. It literally can tear them apart...that is if you don't do something about it.
SO I chose to pray. To pray that I can get all those things; self control, patience, etc. Praying that phil and I get more time together so we can act like a married couple and not just be two people living in the same house. After awhile, the schedule we have starts to resembles the life of roomates. Having people in our life to encourage us and point us to God's truth is what will lead us in finding the ability to have patience and be slow to anger, to have self control and to be humble and gentle. Without God and these people in our lives, we are lost and we will crumble. No doubt about that.
The last couple days, specifically, I was a mess. I did NOT want this life, this life of huge responsibilities and pressure. I did NOT want to do what was right, but I wanted to run and escape from it all. I'm exhausted. I'm burnt out. The life I knew just a couple years ago seemed so much more attractive. I wanted THAT!
After myself and a few close friends have prayed these specific prayers. God showed his love and showed me how much HE is capable of if we just put ALL our trust in Him. His faithfulness this weekend allowed me to appreciate my life.
On Sunday, our pastor talked about how we will wipe out if we are not surrounded by people to encourage us. We will not make it if we pur ourselves in isolation. With Stress and responsiblities we tend to get busy and all that God called us to do gets put on the back burner. With that, the people we love and the things we care about also get put on the back burner. Slowly our life revolves around us and the focus is lost.
Already, hours later, I am seeing God work; my attitude has shifted and our house isn't clouded with that ugly fog of stress. Don't get me wrong...this life is stressful and we will continue to have those weak moments. Probably more often that we life. But after this weekend, I am determined to seek HIM first and allow HIM to direct my steps. Otherwise I am pushed so far off course that everyone around me is effected. And that is not love.
I had to reassure her that that is not always the case. In fact, more often than not (definitely these last few weeks) I have been struggling big time. I find my self short tempered, lack tons of patience, and have some very selfish thoughts and actions. Life is not pleasant when you are short tempered and have 3 little kids. Nor is life fun when you have zero patience and you have 3 kids to care for.
The stress of this life God gave me has been building over time. It has effected my parenting, my ability to be a good friend, and my ability to be a good wife. Phil and I have had more arguments, and you can just feel the stress and tension in the air. it's crazy what stress does to a person/family. It literally can tear them apart...that is if you don't do something about it.
SO I chose to pray. To pray that I can get all those things; self control, patience, etc. Praying that phil and I get more time together so we can act like a married couple and not just be two people living in the same house. After awhile, the schedule we have starts to resembles the life of roomates. Having people in our life to encourage us and point us to God's truth is what will lead us in finding the ability to have patience and be slow to anger, to have self control and to be humble and gentle. Without God and these people in our lives, we are lost and we will crumble. No doubt about that.
The last couple days, specifically, I was a mess. I did NOT want this life, this life of huge responsibilities and pressure. I did NOT want to do what was right, but I wanted to run and escape from it all. I'm exhausted. I'm burnt out. The life I knew just a couple years ago seemed so much more attractive. I wanted THAT!
After myself and a few close friends have prayed these specific prayers. God showed his love and showed me how much HE is capable of if we just put ALL our trust in Him. His faithfulness this weekend allowed me to appreciate my life.
On Sunday, our pastor talked about how we will wipe out if we are not surrounded by people to encourage us. We will not make it if we pur ourselves in isolation. With Stress and responsiblities we tend to get busy and all that God called us to do gets put on the back burner. With that, the people we love and the things we care about also get put on the back burner. Slowly our life revolves around us and the focus is lost.
Already, hours later, I am seeing God work; my attitude has shifted and our house isn't clouded with that ugly fog of stress. Don't get me wrong...this life is stressful and we will continue to have those weak moments. Probably more often that we life. But after this weekend, I am determined to seek HIM first and allow HIM to direct my steps. Otherwise I am pushed so far off course that everyone around me is effected. And that is not love.
Saturday, August 28, 2010
Braxton's eye surgery
This picture shows how braxton's eyes are most of the day. There will be times he straightens one, but as you can see they are very crossed. The surgery was definitely needed to allow him to see in focus.
PREP BEFORE SURGERY
MORNING AFTER SURGERY
much better already! he was VERY droggy the day of and the day after. He is attempting a smile here :)
As most of you know, braxton had his eye surgery last Thursday (8/26/10). From the pictures above you can see that his eyes are already straight! The doctor told us that they will wonder around for a bit, until the muscle of the eye settles back into place. She also said that there is a good chance he will need patching and/or glasses up until he is 8 years old. The biggest concern is that they will have to go back in and surgically correct them.We see the doctor this week and then in 6 weeks. This week she will get a good idea if the surgery worked. But in 6 weeks, once the stitches and swelling and everything goes away, we will have a better idea.
He is not in to much pain anymore. Seems happier. We do give him some ointment to help with the risk of infection and for pain.
He is slowly tracking people as they walk by. Yesterday I saw him watch caden as caden played next to him. It was soo amazing. He's not as verbal the last few days. I think he is just getting us to his "new world". Things must look so different. I can't even imagine.
He still appears to have nystagmus, which is an involuntary rhythmic shaking of his eyes. THe doctor said this surgery could help it. We'll see. He doesn't do it all the time, but every once in a while (throughout the day), you'll see him look down at his nose and then his eyes jitter. Not sure what this means for the future.
Thank you for praying during this time!! Like I said...we still have more hurdles to jump and more challenges on the way. Your prayers and support are always welcomed :)
Thursday, August 19, 2010
Update on the boys development
Yesterday Phil and I took Braxton and Xander to their 8 month follow up appointment at the high risk infant clinic. To our surprise, the doctor that took care of them in the NICU was there. This is the doctor that we wanted to see at their 4 month check up but she was out of town. She is the doctor that I really liked at first...requested her often. But then she made that recommendation to end support for xander and my feelings for her changed a bit. (how could they not).
We walked down the hall, and she was talking to another doctor and she looked at us with HUGE eyes and a great big smile. She hadn't really seen the twins yet, but she KNEW they looked good. Later she tells us how good they really look.
So here's a recap of all we took in yesterday. It's a lot...you may get tired after reading this. i know I did...am.
we'll start with their size. Both boys are the same weight, 15.6 pounds. When plotting them on the growth chart, they are at the 5th percentile for babies 8 months old. THis went down form last visit. They are not making the curve they want to see. So we will go to a GI specialist to see what they would like to do. More than likely, they will just increase the calories for both of them. That is what she did today. They are on 26 cal. and they can eventually go up to 30 if need be. When they are 1 year corrected (december) they will start taking pedia sure.
head:
braxton's head circumference is smaller than xander's. In fact the doctor was wanting braxton's to be bigger. He had a cerebellum bleed while in the hospital, and this could be a reason for the size of his head...or it just could be that he needs to grow more. once we give him more calories and he's gaining weigh and growing, his head will proportionately grow with him. (that is our prayer).
along with the cerebellum bleed..this could also be why he is not as coordinated as xander. Braxton is not sitting up or crawling yet. But we found out that crawling is about an 8 month milestone, and we are just at 8 months. Braxton is pivoting from left to right while on his belly, so that is a good sign.
eyes:
braxton, as a lot of you know, will have surgery next thursday (26th). We will go this monday to the anaesthesiologist to make sure he can have it at out patient and not have to be in the hospital over night.
we are ready for this surgery...i know he will be such a different kid.
xander needs to get the cyst on the side of his eye/head taken off. Now that he is mobile he's more likely to fall on it and that could be dangerous. this doctor was on duty when xander coded from sedation in the hospital, and seems to think that he will not have a problem because he is much healthier. waiting for that referral.
ears:
this was the most shocking to me. The doctor was really concerned with their hearing. This whole time I have thought (and could still be right), they had great hearing. Well they did some tests using random noise makers and they both didn't respond to them like they should. That, and my history of having hearing loss, plus their prematurity are all weighing against them. The biggest concern was that their "speech" is not where it should be. They are making noises, but the noises they are making are that of a 3-6 month old. They should be making strong consonant sounds like, "ba ba" "da da", etc.
So they will be getting a hearing test that requires them to be sedated..it's called the ABR. I am now very curious (not worried) what they find. waiting on that referral.
they will also be getting speech therapy... again...i have to follow up on this to make sure the authorization went through.
"down there" :)
braxton has some fluid build up, that looked like a hernia near his testicles. I guess this is common among preemies. Turns out it's not a hernia but will need to see a urologist to follow up on it. another call to add to my list.....
Dr. houghlan was soo pleased with the boys. I also sensed some amazement and surprise when she found out xander got off oxygen soo quickly. She was very optimistic about braxton as well. She said with constant therapy at home and in the clinic, she can see him improving with his muscle tone. He still is tight but I asked about the cp label, and she said that is not what she would do at this point in time. I need to massage and stretch him out a lot more than I do. She is going to try and get us more in home services to avoid me having to drive around the county. (doing that with three young children is very hard).
So I think that is it...we will go back in November to follow up with all this stuff.
over all I was pleased with the visit.... Keeping up with their appointments and specialist is a chore. It's a job all in itself. Its very overwhelming to say the least, but it gets done. some how...it does.
till next time.
We walked down the hall, and she was talking to another doctor and she looked at us with HUGE eyes and a great big smile. She hadn't really seen the twins yet, but she KNEW they looked good. Later she tells us how good they really look.
So here's a recap of all we took in yesterday. It's a lot...you may get tired after reading this. i know I did...am.
we'll start with their size. Both boys are the same weight, 15.6 pounds. When plotting them on the growth chart, they are at the 5th percentile for babies 8 months old. THis went down form last visit. They are not making the curve they want to see. So we will go to a GI specialist to see what they would like to do. More than likely, they will just increase the calories for both of them. That is what she did today. They are on 26 cal. and they can eventually go up to 30 if need be. When they are 1 year corrected (december) they will start taking pedia sure.
head:
braxton's head circumference is smaller than xander's. In fact the doctor was wanting braxton's to be bigger. He had a cerebellum bleed while in the hospital, and this could be a reason for the size of his head...or it just could be that he needs to grow more. once we give him more calories and he's gaining weigh and growing, his head will proportionately grow with him. (that is our prayer).
along with the cerebellum bleed..this could also be why he is not as coordinated as xander. Braxton is not sitting up or crawling yet. But we found out that crawling is about an 8 month milestone, and we are just at 8 months. Braxton is pivoting from left to right while on his belly, so that is a good sign.
eyes:
braxton, as a lot of you know, will have surgery next thursday (26th). We will go this monday to the anaesthesiologist to make sure he can have it at out patient and not have to be in the hospital over night.
we are ready for this surgery...i know he will be such a different kid.
xander needs to get the cyst on the side of his eye/head taken off. Now that he is mobile he's more likely to fall on it and that could be dangerous. this doctor was on duty when xander coded from sedation in the hospital, and seems to think that he will not have a problem because he is much healthier. waiting for that referral.
ears:
this was the most shocking to me. The doctor was really concerned with their hearing. This whole time I have thought (and could still be right), they had great hearing. Well they did some tests using random noise makers and they both didn't respond to them like they should. That, and my history of having hearing loss, plus their prematurity are all weighing against them. The biggest concern was that their "speech" is not where it should be. They are making noises, but the noises they are making are that of a 3-6 month old. They should be making strong consonant sounds like, "ba ba" "da da", etc.
So they will be getting a hearing test that requires them to be sedated..it's called the ABR. I am now very curious (not worried) what they find. waiting on that referral.
they will also be getting speech therapy... again...i have to follow up on this to make sure the authorization went through.
"down there" :)
braxton has some fluid build up, that looked like a hernia near his testicles. I guess this is common among preemies. Turns out it's not a hernia but will need to see a urologist to follow up on it. another call to add to my list.....
Dr. houghlan was soo pleased with the boys. I also sensed some amazement and surprise when she found out xander got off oxygen soo quickly. She was very optimistic about braxton as well. She said with constant therapy at home and in the clinic, she can see him improving with his muscle tone. He still is tight but I asked about the cp label, and she said that is not what she would do at this point in time. I need to massage and stretch him out a lot more than I do. She is going to try and get us more in home services to avoid me having to drive around the county. (doing that with three young children is very hard).
So I think that is it...we will go back in November to follow up with all this stuff.
over all I was pleased with the visit.... Keeping up with their appointments and specialist is a chore. It's a job all in itself. Its very overwhelming to say the least, but it gets done. some how...it does.
till next time.
Wednesday, August 18, 2010
Turning ONE
A year ago today, braxton and xander were born. At 1 pm phil rushed me to the hospital, as it was obvious I quickly went into active labor, having contractions a minute apart. The nurses and doctors thought about giving me an IV to stop these contractions, but it was too late. One of the sacs was already showing. It was time.
At 3:19pm and 3:20, Braxton and Xander entered this world via emergency c-section. They were immediately intubated because they were barely breathing on their own. They were quickly wheeled by me so I could get a glimpse of my new sons.
At this moment...and months to come I would be walking through life completely numb and unaware of what just happened to me and my family. My sons were in critical condition...every minute of every day they could have been taken from us.
By God's grace, a year later I sit here caring for three energetic and loving little boys.
Doctors told us that their quality of life did not look good. Infact, when the boys were just 6 weeks old, they suggested that we end support for xander. Xander's lungs were way under developed and he had a brain bleed that was pressing against the brain tissue. They were certain he would need a trach to help him breathe for the rest of his life, they have eye surgery for ROP, and a shunt to help the swelling in his brain. .....After 5 months in the hospital (arriving home on jan 12, 2010), Xander came home without a trach and without a shunt, and sees perfectly! GOD IS GOOD.
The doctors never insisted on us ending Braxton's life, but did say that life would consist of 24 hour nurses, g-tubes for feedings, brain shunts for the bleeding, and surgery for ROP. Braxton came home on January 2, 2010 without having ROP surgery, without any brain surgeries, and without a G-tube sticking out of his belling.
We would not be able to make it if it weren't for all the support and prayers throughout this journey. Our journey is not nearly over; but I am beginning to see a glimmer of light at the end of the tunnel. It is a speck of brightness, but nevertheless it is there.
Without God, my husband, my awesome family and friends, I would be lost. Literally.
Look out for the next blog about today's developmental clinic appointment. This journey does not stop, nor do we slow down. there is a list of appointments and procedures to be made. TBC....
Thanks again for keeping up with our family and continuing to pray.
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