Tuesday, February 10, 2009
Well, it has definitely been one of those days already (smile).
We took Noah in this morning for an occupational therapy assessment. He did well, testing close to his adjusted age of 1 year and a few weeks (I think his average was 11 months). We are going to start him once a week so he can hopefully move on to his actual age and start achieving that group of milestones. Toward the end of Noah's eval Jonah decided to throw up and of course it was one of his violent rounds (I swear he saves these for public only). Jonah is bringing in two eye teeth at once and his drooling has caused more morning throw ups lately. I knew it was coming because I can recognize his coughing before he brings something up so I got him down on his side to the mat. When it did come up it was nasty and clogged up his nose which always sends him in to spasms. Unfortunately, if you haven't been through one of his spells it is quite scary. This particular therapist plus a new volunteer had never seen Jonah throw up so they were panicking. To make matters worse Jonah was taking awhile to come out of it. He was crying intermittently so I knew that he was getting air but he always gets terrified each time he throws up through his nose. After much suctioning and reassuring he pulled through and was back to himself, tired and shaken but ok. Phew! What a start to a day!
In other Hanna twin news, we are taking both boys to get their teeth looked at by a pediatric specialist in our area this Thursday morning. I have been fretting about the state of their teeth, especially as Jonah's are looking really bad (yellowed and very thin). I spoke with his secretary this morning and explained their history, she said no sedation before age two so Noah's exam could be interesting (to say the least). I am desperate to get things started as if there is any decay going on we have to get caps or something protective going soon. She did mention we may have to be referred to UCLA. Fun, fun.
In better news...Shane is recovering and feeling better. He can lift the boys a bit more but he can't over do things still, laughing last night made his stomach sore so he is still coming through things. Jonah has added a few new words to his repertoire including "Da!" Noah is pretty much saying "Baaabeee! (baby)" without really understanding what it means, also "Meee" is another favorite (yes, it is most funny when battling out his eating sessions and he shoves the spoon away and says "Meeee" as if to say, hey...this is all about me and you aren't making me do a darn thing that I don't want to do!)
Grandma Hanna is in town and helping out around the house. Extra hands are always appreciated. Grandpa Langston and I are taking a cake class together so today we have been making cakes to work on tonight. It has been a fun thing to do together with him plus my best friend Brooke.
The sun is out today and I am hoping the rain is finally going away (we've had it off and on since Friday).
We also had a fun FHE last night and the boys got to make messes and enjoy their own Valentine's cupcakes (photos to come) while the rest of us ate a few for ourselves and decorated the other few dozen for the therapy place that works with the boys on a daily basis.
All in all, another crazy day. But to us, crazy is normal, so maybe I should just say...another normal day in the Hanna house and end this post right here!
Stay tuned for more adventures...
We took Noah in this morning for an occupational therapy assessment. He did well, testing close to his adjusted age of 1 year and a few weeks (I think his average was 11 months). We are going to start him once a week so he can hopefully move on to his actual age and start achieving that group of milestones. Toward the end of Noah's eval Jonah decided to throw up and of course it was one of his violent rounds (I swear he saves these for public only). Jonah is bringing in two eye teeth at once and his drooling has caused more morning throw ups lately. I knew it was coming because I can recognize his coughing before he brings something up so I got him down on his side to the mat. When it did come up it was nasty and clogged up his nose which always sends him in to spasms. Unfortunately, if you haven't been through one of his spells it is quite scary. This particular therapist plus a new volunteer had never seen Jonah throw up so they were panicking. To make matters worse Jonah was taking awhile to come out of it. He was crying intermittently so I knew that he was getting air but he always gets terrified each time he throws up through his nose. After much suctioning and reassuring he pulled through and was back to himself, tired and shaken but ok. Phew! What a start to a day!
In other Hanna twin news, we are taking both boys to get their teeth looked at by a pediatric specialist in our area this Thursday morning. I have been fretting about the state of their teeth, especially as Jonah's are looking really bad (yellowed and very thin). I spoke with his secretary this morning and explained their history, she said no sedation before age two so Noah's exam could be interesting (to say the least). I am desperate to get things started as if there is any decay going on we have to get caps or something protective going soon. She did mention we may have to be referred to UCLA. Fun, fun.
In better news...Shane is recovering and feeling better. He can lift the boys a bit more but he can't over do things still, laughing last night made his stomach sore so he is still coming through things. Jonah has added a few new words to his repertoire including "Da!" Noah is pretty much saying "Baaabeee! (baby)" without really understanding what it means, also "Meee" is another favorite (yes, it is most funny when battling out his eating sessions and he shoves the spoon away and says "Meeee" as if to say, hey...this is all about me and you aren't making me do a darn thing that I don't want to do!)
Grandma Hanna is in town and helping out around the house. Extra hands are always appreciated. Grandpa Langston and I are taking a cake class together so today we have been making cakes to work on tonight. It has been a fun thing to do together with him plus my best friend Brooke.
The sun is out today and I am hoping the rain is finally going away (we've had it off and on since Friday).
We also had a fun FHE last night and the boys got to make messes and enjoy their own Valentine's cupcakes (photos to come) while the rest of us ate a few for ourselves and decorated the other few dozen for the therapy place that works with the boys on a daily basis.
All in all, another crazy day. But to us, crazy is normal, so maybe I should just say...another normal day in the Hanna house and end this post right here!
Stay tuned for more adventures...
Thursday, February 5, 2009
We have added a new word to our family dictionary: appendicitis.
Yes, indeed. Wednesday night Shane started with what he thought was indigestion, by 2:00 in the morning it had become so severe he was lying on the stairs when I came out of the bedroom to check on him because he didn't want to climb up them to get back in to bed.
My husband isn't one to complain about pain but finding him like that plus his symptoms had me nervous it was his appendix.
We spent four hours in the ER before we saw a doctor who confirmed it was his appendix, another 45 minutes to FINALLY get pain meds and another hour and a half to get a CT scan. We then proceeded to wait until 5:00 PM yesterday afternoon until Shane went in to surgery. He was on antibiotics to slow his appendix from perforating but after almost 14 hours in the ER I was ready to scream. Oh how I could go on and on about the many flaws of our health care system.
Good news is that the surgery went well, the surgeon was able to easily removed the very infected appendix via labaroscopy which means smaller scars and hopefully a better recovery. Shane stayed overnight and was discharged this morning.
He is sore and on the coach right now, taking it easy and watching his ever favorite "West Wing" reruns. He is supposed to be off work for at least a week (the doctor said 2-3 but Shane and I both balked at the idea so hopefully his recovery will be much quicker) and he meets with the surgeon next Wednesday for post-op.
So on that exciting note, I will end this post. We are off to choose Jonah's eye glasses and by the way, most of you voted for blue frames!!!
Yes, indeed. Wednesday night Shane started with what he thought was indigestion, by 2:00 in the morning it had become so severe he was lying on the stairs when I came out of the bedroom to check on him because he didn't want to climb up them to get back in to bed.
My husband isn't one to complain about pain but finding him like that plus his symptoms had me nervous it was his appendix.
We spent four hours in the ER before we saw a doctor who confirmed it was his appendix, another 45 minutes to FINALLY get pain meds and another hour and a half to get a CT scan. We then proceeded to wait until 5:00 PM yesterday afternoon until Shane went in to surgery. He was on antibiotics to slow his appendix from perforating but after almost 14 hours in the ER I was ready to scream. Oh how I could go on and on about the many flaws of our health care system.
Good news is that the surgery went well, the surgeon was able to easily removed the very infected appendix via labaroscopy which means smaller scars and hopefully a better recovery. Shane stayed overnight and was discharged this morning.
He is sore and on the coach right now, taking it easy and watching his ever favorite "West Wing" reruns. He is supposed to be off work for at least a week (the doctor said 2-3 but Shane and I both balked at the idea so hopefully his recovery will be much quicker) and he meets with the surgeon next Wednesday for post-op.
So on that exciting note, I will end this post. We are off to choose Jonah's eye glasses and by the way, most of you voted for blue frames!!!
Tuesday, February 3, 2009
Sunday, February 1, 2009
Just a quick update. I have to get to bed so I don't feel like a zombie tomorrow. We have a big day ahead of us. First thing, we have Jonah's therapy appointment at 8:00. Then it is home to get our new insurance in place and start calling doctor's offices. We have to get in to Dr. Ho first thing as the boys have dozens of referrals that need to be put in the system, including their therapy with Terrio. Thank goodness we have Kern Regional to reimburse us because we are having to pay out of pocket for their therapy visits until the Blue Cross referral is in place (that is $50 a half hour!)
I did want to share our wonderful visit with Christi on Saturday. She spent two hours with us and both Shane and I left feeling like we were given the best information that we have yet received regarding Cortical Visual Impairment, Jonah's condition and things we can do right now at home to help him. She lent us the resonance board, Little Room and a positioning swing called the "Wingbo" which helps especially with head control. She also gave us several toys, including a bunch of Mylar toys, pom poms and other worksheets that give ideas on toys to create for Jonah.
She assessed Jonah per the therapy model she uses (which is downstairs on our fridge but I have forgotten off the top of my head which model it is). She marked where he currently is in way of ability so we can do things in that category to push him forward. She said it is still really important that we be using one color toys with a black blanket and black tri-fold to completely enclose Jonah so he is able to totally focus on one thing at a time. She mentioned the best colors to use now are red, silver and the white/black contrast toys. She talked a lot about Mylar paper, pom poms and even taking something as simple as a chip bag and turning it inside out to put over Jonah's right hand to encourage him to grab at it with his left hand which he usually neglects.
We are slowly helping Jonah adjust to these toys. The resonance board he is doing fairly well with (she suggested we first start a few minutes a day with this before trying the Little Room) as well as the Wingbo. He is not as much a fan of the Wingbo as he really has to work when he is harnessed in but with time this will strengthen his upper trunk so we are going to stick with it. If we like the Wingbo we have it on loan until March (she asked for it back when we next travel down to Fresno because she only has two on hand).
She talked to us about the brain's function in CVI, what exactly was happening with Jonah's condition and what good, consistent therapy meant in helping him achieve goals, etc.
She also talked to me about my concerns regarding starting the boys in Nursery with our church come April (post RSV season). She suggested that I video tape the Nursery so that Noah can see the children and hear the voices as well as Jonah. This would be more specifically for Jonah as change and new environments are very, very difficult for Jonah. He has not been around a lot of other children and struggles with even Noah invading his space unexpectedly. It was a great suggestion that I plan to bring up with the Nursery leader here the first of March. That way every Sunday at the time that Nursery would start I will have my father play the video so the boys can see (Noah) and hear the children's voices as well as the teacher so hopefully it will not be such a transition once they actually attend. All in all, I am sure the process will take several weeks of us going with the boys until they are comfortable in the new environment with new children. I have a lot cut out for me, making sure that everyone understands the boys' special needs...especially Jonah. Too much is just too overwhelming for him and it is important I help others understand that.
All in all our day with Christi was a very, very productive day.
After we had to find a tire shop as, with our luck, one of our tires was dangerously close to flat (a concerned driver signaled us from the highway and our tire pressure signal was on so we knew that this was the problem). While waiting we had a yummy lunch at Marie Calendars and then packed up to head home.
On the ear infection front, I am still not convinced these poor babies are over their ear infections! Noah is still pulling at his ears and Jonah's congestion has still not gone away which has resulted in some nasty throwing up. Of course Jonah is also bringing in two new teeth which can only be adding to the issue.
Tomorrow starts a new day and I hope we will enjoy our new pediatrician. I have heard a LOT of good things about him including from the nurse who assessed our boys on Friday (she was with the school district).
Oh! That reminds me that Friday the school district met with us and the boys. Our KRC case manager was also there. She was really happy to see Noah and his pulling to stand on everything. We talked in depth about both boys and my expectations about a home teacher from the district. We will be starting a program where a teacher will come in once a week for an hour and work with both boys to augment their ongoing goals with PT/OT, feeding, etc. I really enjoyed the two reps from the school district. One, a gentleman by the name of Jim who has over 30 years of experience in education (special ed to be exact), was just wonderful with the boys. He had Jonah giggling at him and smiling like you would not believe. He did comment that Jonah has wonderful social skills when someone actually takes the time to one on one interact with him.
So that is our latest....we'll keep you posted as to ongoing events.
I did want to share our wonderful visit with Christi on Saturday. She spent two hours with us and both Shane and I left feeling like we were given the best information that we have yet received regarding Cortical Visual Impairment, Jonah's condition and things we can do right now at home to help him. She lent us the resonance board, Little Room and a positioning swing called the "Wingbo" which helps especially with head control. She also gave us several toys, including a bunch of Mylar toys, pom poms and other worksheets that give ideas on toys to create for Jonah.
She assessed Jonah per the therapy model she uses (which is downstairs on our fridge but I have forgotten off the top of my head which model it is). She marked where he currently is in way of ability so we can do things in that category to push him forward. She said it is still really important that we be using one color toys with a black blanket and black tri-fold to completely enclose Jonah so he is able to totally focus on one thing at a time. She mentioned the best colors to use now are red, silver and the white/black contrast toys. She talked a lot about Mylar paper, pom poms and even taking something as simple as a chip bag and turning it inside out to put over Jonah's right hand to encourage him to grab at it with his left hand which he usually neglects.
We are slowly helping Jonah adjust to these toys. The resonance board he is doing fairly well with (she suggested we first start a few minutes a day with this before trying the Little Room) as well as the Wingbo. He is not as much a fan of the Wingbo as he really has to work when he is harnessed in but with time this will strengthen his upper trunk so we are going to stick with it. If we like the Wingbo we have it on loan until March (she asked for it back when we next travel down to Fresno because she only has two on hand).
She talked to us about the brain's function in CVI, what exactly was happening with Jonah's condition and what good, consistent therapy meant in helping him achieve goals, etc.
She also talked to me about my concerns regarding starting the boys in Nursery with our church come April (post RSV season). She suggested that I video tape the Nursery so that Noah can see the children and hear the voices as well as Jonah. This would be more specifically for Jonah as change and new environments are very, very difficult for Jonah. He has not been around a lot of other children and struggles with even Noah invading his space unexpectedly. It was a great suggestion that I plan to bring up with the Nursery leader here the first of March. That way every Sunday at the time that Nursery would start I will have my father play the video so the boys can see (Noah) and hear the children's voices as well as the teacher so hopefully it will not be such a transition once they actually attend. All in all, I am sure the process will take several weeks of us going with the boys until they are comfortable in the new environment with new children. I have a lot cut out for me, making sure that everyone understands the boys' special needs...especially Jonah. Too much is just too overwhelming for him and it is important I help others understand that.
All in all our day with Christi was a very, very productive day.
After we had to find a tire shop as, with our luck, one of our tires was dangerously close to flat (a concerned driver signaled us from the highway and our tire pressure signal was on so we knew that this was the problem). While waiting we had a yummy lunch at Marie Calendars and then packed up to head home.
On the ear infection front, I am still not convinced these poor babies are over their ear infections! Noah is still pulling at his ears and Jonah's congestion has still not gone away which has resulted in some nasty throwing up. Of course Jonah is also bringing in two new teeth which can only be adding to the issue.
Tomorrow starts a new day and I hope we will enjoy our new pediatrician. I have heard a LOT of good things about him including from the nurse who assessed our boys on Friday (she was with the school district).
Oh! That reminds me that Friday the school district met with us and the boys. Our KRC case manager was also there. She was really happy to see Noah and his pulling to stand on everything. We talked in depth about both boys and my expectations about a home teacher from the district. We will be starting a program where a teacher will come in once a week for an hour and work with both boys to augment their ongoing goals with PT/OT, feeding, etc. I really enjoyed the two reps from the school district. One, a gentleman by the name of Jim who has over 30 years of experience in education (special ed to be exact), was just wonderful with the boys. He had Jonah giggling at him and smiling like you would not believe. He did comment that Jonah has wonderful social skills when someone actually takes the time to one on one interact with him.
So that is our latest....we'll keep you posted as to ongoing events.
Wednesday, January 28, 2009
The above frames are what we chose for Jonah (vote above on what color we should choose!) through the Disney line. My goodness, frames and lenses are expensive...even for babies. Next time I think we'll buy his frames online. It is a good thing that Kern Regional offered to reimburse us this time as our insurance won't pay for the glasses.
Also, good news. The director of Blind Babies Foundation agreed to meet with Shane, I and Jonah on Saturday morning. We are taking the long drive down to Visalia to get a sturdy Little Room and Resonance Board. She was so kind, she isn't charging us for the materials but asked that we return them after Jonah grows out of them. I was so excited! She suggested we use the Little Room built out of sturdy wood as it will coordinate better with the Resonance Board (Shane and I were going to put one together out of a cardboard box). She also is going to spend time with Jonah, assess him and give us good ideas of what we can do at home to work with him.
In other good news, I heard from our case manager today and she was able to speak with the Visual Impairment specialist of the school district. He has decades of experience and also has a blind daughter. He is taking on Jonah's case and is going to see if we can't get him some in home services that would work.
So it seems that the squeaky wheel has indeed got the grease this go around. Hard work has paid off!!!
Also, good news. The director of Blind Babies Foundation agreed to meet with Shane, I and Jonah on Saturday morning. We are taking the long drive down to Visalia to get a sturdy Little Room and Resonance Board. She was so kind, she isn't charging us for the materials but asked that we return them after Jonah grows out of them. I was so excited! She suggested we use the Little Room built out of sturdy wood as it will coordinate better with the Resonance Board (Shane and I were going to put one together out of a cardboard box). She also is going to spend time with Jonah, assess him and give us good ideas of what we can do at home to work with him.
In other good news, I heard from our case manager today and she was able to speak with the Visual Impairment specialist of the school district. He has decades of experience and also has a blind daughter. He is taking on Jonah's case and is going to see if we can't get him some in home services that would work.
So it seems that the squeaky wheel has indeed got the grease this go around. Hard work has paid off!!!
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