Thank you, Brooke and Holly, for sharing this very special article with me. It comes on the heels of a very emotional week with our Jonah and so the message was much needed and well received. I love seeing someone put to words and music all the emotions a parent raising a special needs child may feel and how God feels in watching us through our journey.
I know you will enjoy this link. I can't wait to buy the album and enjoy the music.
Janice Kapp Perry, Far Different Places
Wednesday, January 20, 2010
Tuesday, January 19, 2010
Well, today's visit did not provide much "new" information. We first met with the neurologist, a very kind, young specialist. After describing our past couple of episodes his first comment was, "well these are not typical seizures." We talked more about Jonah's history and he did agree that we could not rule out the possibility of seizures. Jonah's latest EEG was considered abnormal. The neurosurgeon said that even with Jonah's grade IV bleed at birth his brain should have shown more development and activity at this time than the EEG showed. He did say it was a tough call as this was his first EEG (so he did not know if this would be Jonah's baseline) but this did raise questions regarding possible seizures and their affect on Jonah's neurological situation. I guess this is not too surprising as Jonah did suffer the most severe brain bleed at birth, his brain activity will always be abnormal. However, for the specialist to even think that Jonah's EEG was on the abnormal side as the brain can rewire itself (called neuroplasticity) confirms worries I have been suffering from recently. Is Jonah making progress? Why so slow? It is heart wrenching to see the small progress that he makes and how much he struggles. Why are some other kiddos with grade 4 bleeds advancing quicker? Why does Jonah struggle so much? Maybe there is more to the picture then we understand. As follow up, the neurologist wanted us to first follow up with cardiology and after the 30-day monitor, if nothing was recorded of significance then we would schedule a 24-hour EEG with sleep time at the hospital. He did say that although abnormal the recent EEG did not show activity in the area of the brain that would cause epileptic episodes but that a better picture could be obtained by monitoring the brain for a 24-hour period that included sleep time as during sleep the brain is more likely to show epileptic activity if the individual is at risk for or will develop seizures.
After neurology, we met with cardiology. The wait was just awful (an hour) and Jonah had absolutely no patience. He had an early morning and was not able to sleep and is generally somewhat uncomfortable and impatient when in an environment that is not familiar to him. Unfortunately right now, this brings with it some awkward behaviors. Jonah's biggest issues right now when it comes to impatience, anger, or boredom are banging of the head or hitting himself with his right fist. *Sigh* It makes for quite a show, I am sure. I do try and stop this when possible but as with everything that has come before it takes time for him to grow out of it. I pray this happens and quickly. Anyways, finally we were able to get in and Jonah's King of Hearts was set up. He will wear two patches on his chest and be attached to a small box which records 30-second intervals of his heart rate (records and then replaces with a new recording). If Jonah goes in to an episode we press a button that records 60-second intervals and we can do this up to 3 times. Once completed, we have to get to a land line and call an 800 number to transfer the information to a data bank where they track the information to be given to the doctor at the end of the 30-day period.
After, Grandpa took us to Claim Jumpers. Yummy food! It was a nice break as Fresno has a Claim Jumpers and Bakersfield does not. Next, Grandpa drove home through the awful rain and we finally made it back to Bakersfield after 2:00 p.m. It was a long day but at least we accomplished a few things.
So this is our latest. We are all still trying to overcome colds. Noah ate awful today (his usual when he gets sick) but was still full of energy and running everywhere. Jonah has an awful, runny nose and lots of congestion. I am suffering from the same, plus coughing and a nasty sounding voice. Hopefully the worst is over! Too bad we are sending Grandpa and Grandma off with a round of illness here at the house. I hope they go home healthy (so far, so good).
Thanks everyone for your sweet comments and concerns. Keep praying for our babies, that is all we ask and is the most important thing that can be done.
After neurology, we met with cardiology. The wait was just awful (an hour) and Jonah had absolutely no patience. He had an early morning and was not able to sleep and is generally somewhat uncomfortable and impatient when in an environment that is not familiar to him. Unfortunately right now, this brings with it some awkward behaviors. Jonah's biggest issues right now when it comes to impatience, anger, or boredom are banging of the head or hitting himself with his right fist. *Sigh* It makes for quite a show, I am sure. I do try and stop this when possible but as with everything that has come before it takes time for him to grow out of it. I pray this happens and quickly. Anyways, finally we were able to get in and Jonah's King of Hearts was set up. He will wear two patches on his chest and be attached to a small box which records 30-second intervals of his heart rate (records and then replaces with a new recording). If Jonah goes in to an episode we press a button that records 60-second intervals and we can do this up to 3 times. Once completed, we have to get to a land line and call an 800 number to transfer the information to a data bank where they track the information to be given to the doctor at the end of the 30-day period.
After, Grandpa took us to Claim Jumpers. Yummy food! It was a nice break as Fresno has a Claim Jumpers and Bakersfield does not. Next, Grandpa drove home through the awful rain and we finally made it back to Bakersfield after 2:00 p.m. It was a long day but at least we accomplished a few things.
So this is our latest. We are all still trying to overcome colds. Noah ate awful today (his usual when he gets sick) but was still full of energy and running everywhere. Jonah has an awful, runny nose and lots of congestion. I am suffering from the same, plus coughing and a nasty sounding voice. Hopefully the worst is over! Too bad we are sending Grandpa and Grandma off with a round of illness here at the house. I hope they go home healthy (so far, so good).
Thanks everyone for your sweet comments and concerns. Keep praying for our babies, that is all we ask and is the most important thing that can be done.
Monday, January 18, 2010
Friends,
Sorry it has been so long since our last posting! It has been just hectic here and I've only found time to update Face Book lately. I have definitely neglected my blog!
I can't believe it has only been a month. A lot has happened this month.
First, Jonah had another potential seizure episode about two weeks ago. It came on the heels of his being very sick (I am not sure yet but this may be a trigger for his episodes as the past two seem to happen right after an illness). This was an awful episode of tachycardia. We had a church ward friend that is a GP (general practitioner) check Jonah for symptoms of pneumonia or anything serious enough to warrant getting to an ER immediately. After checking him out and finding that his lungs were clear, ears fine and throat fine he told us to do what we were comfortable with but to get him to a hospital because of his high heart rate (thank goodness we have a pulsox in our home). So we took Jonah, with equipment, down as quickly as we could to the childrens hospital in Madera. His elevated heart rate lasted all in all for four hours. Yup, four hours ranging between 180-190. Finally, right upon our arrival, his heart rate lowered and he passed out from exhaustion. Shane used a simple, to the point analogy. Imagine running a marathon beyond your ability without stopping for four hours....that is pure exhaustion. Frustrating for us because we checked in to the ER with Jonah sleeping but stable. All they had was our description (once again) of the event. Jonah was in the ER back in November for a similar episode but by the time the ER doc saw him he was stable so the doctor said could be a seizure and sent us home to call his neurosurgeon. Same thing this time, although because of the length of time with the tachycardia I insisted that a cardiologist be contacted. At least we went home with a referral for a 30-day monitoring device and a referral to Neurology to get a work up on Jonah and discuss "other" testing for seizures. Both specialists that the ER doc spoke with agreed that all the symptoms together (rapid eye movement, claminess, tachycardia, jitteriness, in and out coherence of surroundings) pointed to a seizure. Great, tell me something I don't know! In the mean time they won't treat anything until they have something on paper (test result, etc.) showing Jonah really does suffer from seizures. So how long will it take before we are lucky enough to be testing Jonah and actually capture one of his unpredictable episodes?? My worry is that his little heart won't take several more of these tachycardias and I do not live in an area where there is competent pediatric care. Tough position to be in, living two hours away from the nearest children's facility that is capable of handling my child. *Sigh*
Tomorrow we meet with the neurologist for the first time. We will see what they recommend for testing. The ER doc did talk about repeating Jonah's EEG (which really I feel is not that helpful unless you happen to be in an episode or they are able to induce an episode during testing). I am hoping that tomorrow the neurologist will be more aggressive and perhaps order testing that extends beyond a couple of hours, maybe a 24 hour test or one that he can wear and it record information over a month or so (like the heart equipment he is receiving tomorrow). He picks up cardiology equipment after neurology. The test is referred to as the King of hearts Monitor. Jonah will wear it for 30 days and should he experience another tachycardia it will record everything for evaluation.
Needless to say, we have been somewhat preoccupied at this house! On top of this event, the boys were both sick as can be with bacterial infections and once again this past week they started to get sick again. Noah seems to be somewhat recovering but Jonah and I are very ill. We went to the pediatrician this morning and he did not want to give antibiotics yet but gave us lab slips should things not clear up in a day or two. I even had him look me over as my doctor was not in today. I am completely miserable, thank goodness Grandma and Grandpa Langston are here and have been helping with everything. I have been able to rest and hopefully in the next day or two I will feel better. I hope. I was actually hoping for some antibiotics today, I hate being miserable and it makes taking care of the boys so much more challenging.
Today the boys did not have school and I canceled therapy as they are ill and just need to be home recovering. The weather was just awful, awful. We woke up to an awful wind storm that bent and eventually broke our patio umbrella. Aargh! This is not very cheap to replace but I guess we have a few months until spring and it is just a "thing" and life will go on. Still, it made for a frustrating morning.
Grandma and Grandpa Langston return home Friday. We will miss them. They are such a huge help and thank goodness they were here during Jonah's last episode as we left Noah at home and Shane and I rushed Jonah to the ER. It would make life so much more simple having close family that we could count on but for now, God has other plans so we will be grateful instead for their frequent visits. Both sets of grandparents go above and beyond in their help.
I will update the post later and give information about Jonah's appointments tomorrow. Noah continues to do well. We actually got a bit of bad news last week. Blue Cross decided to change it's HMO plans and now charges a $20 co-pay for every therapy session whereas last year they did not charge any co-pay. That is a hefty bill to pay when you have 8 visits a week and definitely affects the budget. Eventually Medical will reimburse for Jonah (but that takes months), so because of all of this we dropped Noah's occupational therapy. He tested for his actual age with his last assessment (not even adjusted) so I did not feel as badly dropping the OT. He just goes for PT now, which puts us down to 7 visits instead of 8. Shane is due for a cost of living increase and is trying to negotiate the cost of the extra visits but his boss has been MIA about his Christmas bonus (although when he inquired he was told that he was to get a bonus but that his boss, after leaving for vacation, had remembered he'd forgotten to take care of the management bonuses.....we are yet to see the bonus). So we are frustrated to say the least. Pray that things will go through and that somehow we can make this new co-pay expense work out. It is tough not being able to work, especially in situations like this. I keep thinking how much easier it would be if I could work. I know it is not the right choice for us now but it is moments like this that really frustrate me.
Thanks everyone for your prayers and support. We love you all.
Sorry it has been so long since our last posting! It has been just hectic here and I've only found time to update Face Book lately. I have definitely neglected my blog!
I can't believe it has only been a month. A lot has happened this month.
First, Jonah had another potential seizure episode about two weeks ago. It came on the heels of his being very sick (I am not sure yet but this may be a trigger for his episodes as the past two seem to happen right after an illness). This was an awful episode of tachycardia. We had a church ward friend that is a GP (general practitioner) check Jonah for symptoms of pneumonia or anything serious enough to warrant getting to an ER immediately. After checking him out and finding that his lungs were clear, ears fine and throat fine he told us to do what we were comfortable with but to get him to a hospital because of his high heart rate (thank goodness we have a pulsox in our home). So we took Jonah, with equipment, down as quickly as we could to the childrens hospital in Madera. His elevated heart rate lasted all in all for four hours. Yup, four hours ranging between 180-190. Finally, right upon our arrival, his heart rate lowered and he passed out from exhaustion. Shane used a simple, to the point analogy. Imagine running a marathon beyond your ability without stopping for four hours....that is pure exhaustion. Frustrating for us because we checked in to the ER with Jonah sleeping but stable. All they had was our description (once again) of the event. Jonah was in the ER back in November for a similar episode but by the time the ER doc saw him he was stable so the doctor said could be a seizure and sent us home to call his neurosurgeon. Same thing this time, although because of the length of time with the tachycardia I insisted that a cardiologist be contacted. At least we went home with a referral for a 30-day monitoring device and a referral to Neurology to get a work up on Jonah and discuss "other" testing for seizures. Both specialists that the ER doc spoke with agreed that all the symptoms together (rapid eye movement, claminess, tachycardia, jitteriness, in and out coherence of surroundings) pointed to a seizure. Great, tell me something I don't know! In the mean time they won't treat anything until they have something on paper (test result, etc.) showing Jonah really does suffer from seizures. So how long will it take before we are lucky enough to be testing Jonah and actually capture one of his unpredictable episodes?? My worry is that his little heart won't take several more of these tachycardias and I do not live in an area where there is competent pediatric care. Tough position to be in, living two hours away from the nearest children's facility that is capable of handling my child. *Sigh*
Tomorrow we meet with the neurologist for the first time. We will see what they recommend for testing. The ER doc did talk about repeating Jonah's EEG (which really I feel is not that helpful unless you happen to be in an episode or they are able to induce an episode during testing). I am hoping that tomorrow the neurologist will be more aggressive and perhaps order testing that extends beyond a couple of hours, maybe a 24 hour test or one that he can wear and it record information over a month or so (like the heart equipment he is receiving tomorrow). He picks up cardiology equipment after neurology. The test is referred to as the King of hearts Monitor. Jonah will wear it for 30 days and should he experience another tachycardia it will record everything for evaluation.
Needless to say, we have been somewhat preoccupied at this house! On top of this event, the boys were both sick as can be with bacterial infections and once again this past week they started to get sick again. Noah seems to be somewhat recovering but Jonah and I are very ill. We went to the pediatrician this morning and he did not want to give antibiotics yet but gave us lab slips should things not clear up in a day or two. I even had him look me over as my doctor was not in today. I am completely miserable, thank goodness Grandma and Grandpa Langston are here and have been helping with everything. I have been able to rest and hopefully in the next day or two I will feel better. I hope. I was actually hoping for some antibiotics today, I hate being miserable and it makes taking care of the boys so much more challenging.
Today the boys did not have school and I canceled therapy as they are ill and just need to be home recovering. The weather was just awful, awful. We woke up to an awful wind storm that bent and eventually broke our patio umbrella. Aargh! This is not very cheap to replace but I guess we have a few months until spring and it is just a "thing" and life will go on. Still, it made for a frustrating morning.
Grandma and Grandpa Langston return home Friday. We will miss them. They are such a huge help and thank goodness they were here during Jonah's last episode as we left Noah at home and Shane and I rushed Jonah to the ER. It would make life so much more simple having close family that we could count on but for now, God has other plans so we will be grateful instead for their frequent visits. Both sets of grandparents go above and beyond in their help.
I will update the post later and give information about Jonah's appointments tomorrow. Noah continues to do well. We actually got a bit of bad news last week. Blue Cross decided to change it's HMO plans and now charges a $20 co-pay for every therapy session whereas last year they did not charge any co-pay. That is a hefty bill to pay when you have 8 visits a week and definitely affects the budget. Eventually Medical will reimburse for Jonah (but that takes months), so because of all of this we dropped Noah's occupational therapy. He tested for his actual age with his last assessment (not even adjusted) so I did not feel as badly dropping the OT. He just goes for PT now, which puts us down to 7 visits instead of 8. Shane is due for a cost of living increase and is trying to negotiate the cost of the extra visits but his boss has been MIA about his Christmas bonus (although when he inquired he was told that he was to get a bonus but that his boss, after leaving for vacation, had remembered he'd forgotten to take care of the management bonuses.....we are yet to see the bonus). So we are frustrated to say the least. Pray that things will go through and that somehow we can make this new co-pay expense work out. It is tough not being able to work, especially in situations like this. I keep thinking how much easier it would be if I could work. I know it is not the right choice for us now but it is moments like this that really frustrate me.
Thanks everyone for your prayers and support. We love you all.
Monday, January 4, 2010
Sunday, December 27, 2009
Christmas Day: the boys enjoyed opening their new gifts from Grandma and Grandpa Hanna. Noah's favorite toy is his new dancing/singing Elmo (quite a vocabulary that this little guy has!), he also got a ride along Matar truck (from Cars). Jonah got an amazing karaoke machine, he giggled and giggled over hearing his voice when using the microphone. I really think this will be a fun toy to encourage Jonah's speech. He has a long ways to go but loves to interact with us and tries very hard to mimic at least a consonant from words that we say which is wonderful. He now calls Grandma Hanna "amma." Noah is also using more words and even combining a few. A few days ago he declared, "No, mine!" when we took away a toy. Great progress Noah!
We are excited for Disneyland later this week. I have been reading up on their services available to disabled individuals. They really do go a long ways to accommodating ALL children, hurrah for Disney! I think the boys will have a wonderful time. Grandma and Grandpa Hanna were able to schedule a night at a timeshare within walking distance of the park so we can both walk to the park and enjoy the fireworks for New Year's Eve that evening. It will be a neat experience for everyone. It will be our first amusement park trip with Jonah and his new chair so wish us a good experience!
We hope all of you had a wonderful Christmas and will enjoy the New Year as it approaches this week.
We are excited for Disneyland later this week. I have been reading up on their services available to disabled individuals. They really do go a long ways to accommodating ALL children, hurrah for Disney! I think the boys will have a wonderful time. Grandma and Grandpa Hanna were able to schedule a night at a timeshare within walking distance of the park so we can both walk to the park and enjoy the fireworks for New Year's Eve that evening. It will be a neat experience for everyone. It will be our first amusement park trip with Jonah and his new chair so wish us a good experience!
We hope all of you had a wonderful Christmas and will enjoy the New Year as it approaches this week.
Christmas Eve 2009: we enjoyed a family program which included hymns, a story from Grandpa Hanna, the reading of Christ's birth from Luke and an animated story of the nativity. After we all opened one gift. After the boys went to bed we enjoyed movies and games. It was a fun night and we enjoyed having Grandpa and Grandma Hanna.
Saturday, December 26, 2009
Just a quick posting. I plan to get photos on the blog soon of our holiday with Grandma and Grandpa Hanna.
It was a wonderful holiday. We enjoyed lots of giggles and laughter from the boys and that is what Christmas is really all about after all. I have always felt Christmas is about children and this year confirmed what a joy children are.
By far the favorite gifts this year where the dancing, talking Elmo for Noah and a pretty darn neat karaoke v-tech keyboard for Jonah (he gets quite a kick out of hearing his voice on the microphone!)
We had lots and lots of good food (sadly) and enjoyed playing lots of Wii. Grandpa Hanna received his Wii for Christmas and we have enjoyed it quite a lot the past 24 hours. We have played everything from bowling to golfing.
We are looking forward to Disneyland next week. I have heard good things from other parents who have children with special needs. Disneyland is supposed to be very accommodating for children with special needs so I hope Jonah will enjoy the experience.
Grandpa and Grandma where able to get a room at a local time share so we will be within walking distance to the park and able to see fireworks at midnight for New Year's. It will be a lot of fun!
Shane gets this next week off and we are grateful he will be home with us.
I will post Christmas photos soon. We hope each of you had a wonderful holiday!
It was a wonderful holiday. We enjoyed lots of giggles and laughter from the boys and that is what Christmas is really all about after all. I have always felt Christmas is about children and this year confirmed what a joy children are.
By far the favorite gifts this year where the dancing, talking Elmo for Noah and a pretty darn neat karaoke v-tech keyboard for Jonah (he gets quite a kick out of hearing his voice on the microphone!)
We had lots and lots of good food (sadly) and enjoyed playing lots of Wii. Grandpa Hanna received his Wii for Christmas and we have enjoyed it quite a lot the past 24 hours. We have played everything from bowling to golfing.
We are looking forward to Disneyland next week. I have heard good things from other parents who have children with special needs. Disneyland is supposed to be very accommodating for children with special needs so I hope Jonah will enjoy the experience.
Grandpa and Grandma where able to get a room at a local time share so we will be within walking distance to the park and able to see fireworks at midnight for New Year's. It will be a lot of fun!
Shane gets this next week off and we are grateful he will be home with us.
I will post Christmas photos soon. We hope each of you had a wonderful holiday!
Sunday, December 20, 2009
Just one more quick posting.
Although we have our challenges and the past few weeks have been worrisome with Jonah's poor eating habits, I had a peaceful moment recently that has stayed with me.
It came to me one day that the many, many prayers offered in behalf of our family have sustained us through the past two years. I know that I have said this before but this moment came to me so clearly that I know I was being reminded that we are being watched over.
So, to all of you who have prayed and continue to pray for our family I am sending you a sincere, heartfelt thank you. God bless and Merry Christmas.
Although we have our challenges and the past few weeks have been worrisome with Jonah's poor eating habits, I had a peaceful moment recently that has stayed with me.
It came to me one day that the many, many prayers offered in behalf of our family have sustained us through the past two years. I know that I have said this before but this moment came to me so clearly that I know I was being reminded that we are being watched over.
So, to all of you who have prayed and continue to pray for our family I am sending you a sincere, heartfelt thank you. God bless and Merry Christmas.
Christmas Blessings! The boys looked so adorable today in their Christmas outfits.
We are happy that our Christmas season is winding down. It will be nice to relax and just enjoy family this week. Grandma and Grandpa Hanna are in town. We will have a fun week together and Tuesday will enjoy Shane's 35th birthday. (LOVE YOU SWEETHEART!)
Tomorrow we have the first test for Jonah. They will be doing an upper GI exam to see if he has developed any hernias or other issues from his August surgery that could be causing complications with his appetite. PLEASE pray for Jonah. Right now we dread meal time as we know it will mean holding Jonah down and usually syringe feeding him his formula to assure he gets in the right calories. NOT FUN.
We are praying for a miracle that we will find an answer to Jonah's feeding issues WITHOUT surgery and if it were the only thing I received this Christmas season, I would be the happiest woman on earth.
Merry Christmas!
We are happy that our Christmas season is winding down. It will be nice to relax and just enjoy family this week. Grandma and Grandpa Hanna are in town. We will have a fun week together and Tuesday will enjoy Shane's 35th birthday. (LOVE YOU SWEETHEART!)
Tomorrow we have the first test for Jonah. They will be doing an upper GI exam to see if he has developed any hernias or other issues from his August surgery that could be causing complications with his appetite. PLEASE pray for Jonah. Right now we dread meal time as we know it will mean holding Jonah down and usually syringe feeding him his formula to assure he gets in the right calories. NOT FUN.
We are praying for a miracle that we will find an answer to Jonah's feeding issues WITHOUT surgery and if it were the only thing I received this Christmas season, I would be the happiest woman on earth.
Merry Christmas!
Monday, December 14, 2009
I wish I had good news to share today.
We headed down to Fresno for three separate clinics at the hospital. First, we hit GI Clinic for both boys. This was probably our worst visit. For the first time EVER, Jonah weighs less then his brother. This is NOT good. We have been battling his horrible appetite ever since his fundoplication surgery in August. We started Periactin back in October in hopes it would boost his appetite but I am sad to say it has only helped marginally. I thought perhaps he had just hit a plateau but imagine my shock when they weighed him only to discover he had LOST weight and was thinner then Noah. It does not help that he has over an inch in height on Noah. This makes him look even more skinny. Noah did gain a bit of weight/height in the past couple of months. He is still small but because he is moving forward they are not yet worried about his progress. The first suggestion for Jonah was, "well...what about a g-tube?" Well, guess what. Have we NOT had this discussion before? I swear I feel that I am constantly repeating myself with the same doctors who see us every few months. G-tube is the LAST option, absolutely the last option. Jonah has had four abdominal surgeries and pursuing an additional surgery is not something I take lightly. Also, I do not want to take any possible developmental progress from Jonah and adding a G-tube will not help his possible ability to feed himself some day. Yes, there is a possibility we can pursue night feedings and still possibly maintain feeding during the day but I have a sinking feeling that if we pursue this option Jonah will have it for life and it will affect his ability to eat independently.
So, after discussing options the doctor agreed to pursue a couple of tests to see if the problem is related to his fundo. First, we will do an upper GI study to see if any hernias have developed due to the procedure. If nothing is found that could be causing issues we will then do an endoscopy to see if the fundo is correctly positioned. If this also shows nothing and in three months Jonah has not gained weight....they will start the discussion of G-tube.
I can definitely say I am stressed out. We have three months to get weight on Jonah. The GI doc did give us two cans of DuoCal and asked that we start adding a few scoops to everything he eats (Noah too). She said the DuoCal should be more easily digested then the Benecalorie that Noah was on for such a long time. I hope that both boys will tolerate the DuoCal and that it will help both gain weight. Also, for the first and only time, I hope that something will be found with these tests that can give us a definitive reason as to why Jonah has suddenly lost his appetite. There is no real reason for his weight loss other then something related to his fundo surgery from August.
After GI we went to see the surgeon who did Jonah's fundo and he basically agreed with GI and even made the frustrating comment that he really did not understand what was going on with Jonah. He said that loss of appetite is not a common risk of a fundoplication and he certainly does not understand why this has become an issue for Jonah.
Please, pray for Jonah. Pray for all of us. We really need these next three months to make the difference. We are trying so hard and have fought so much and given so much time and effort toward preventing him from ending up with a feeding tube.
Jonah also saw his eye specialist. Everything is fine from his November surgery. His specialist felt that his eyes showed improvement and was pleased with how well he seems to be using both eyes since the procedure.
After, we delivered hygiene kits that our church ward Relief Society assembled to the Bishop's Storehouse in Fresno to be distributed to those in need. We finally got on the road toward home a bit after 1:00 pm.
It was definitely a long day. Noah has much less tolerance for these visits. He does not handle having to be in one place without roaming around freely well AT ALL. In fact, I think the GI doc's comment about Noah's behavior today was, "Well...he certainly is wild isn't he?" Yeah, he is. He is a typical, high energy, in to everything two year old and spends only a few seconds on any one given thing.
So I am glad to be home. I am going to bed and then we will start the process again tomorrow. Oh! We also got Jonah transitioned to a big boy bed. He is now officially downstairs in his own room with his own set of big boy furniture. We set up the side rail tonight and washed his quilt and sheets. Tomorrow will be his first night in his own room. Such a big step! Eventually in the coming months we will transition Noah too. Right now, he would be much too big of a trouble maker to take him out of his crib.
That is the latest in the Hanna home. We hope you are enjoying the Christmas season. We love Christmas here in our home.
God bless everyone. Please keep our family in your prayers.
We headed down to Fresno for three separate clinics at the hospital. First, we hit GI Clinic for both boys. This was probably our worst visit. For the first time EVER, Jonah weighs less then his brother. This is NOT good. We have been battling his horrible appetite ever since his fundoplication surgery in August. We started Periactin back in October in hopes it would boost his appetite but I am sad to say it has only helped marginally. I thought perhaps he had just hit a plateau but imagine my shock when they weighed him only to discover he had LOST weight and was thinner then Noah. It does not help that he has over an inch in height on Noah. This makes him look even more skinny. Noah did gain a bit of weight/height in the past couple of months. He is still small but because he is moving forward they are not yet worried about his progress. The first suggestion for Jonah was, "well...what about a g-tube?" Well, guess what. Have we NOT had this discussion before? I swear I feel that I am constantly repeating myself with the same doctors who see us every few months. G-tube is the LAST option, absolutely the last option. Jonah has had four abdominal surgeries and pursuing an additional surgery is not something I take lightly. Also, I do not want to take any possible developmental progress from Jonah and adding a G-tube will not help his possible ability to feed himself some day. Yes, there is a possibility we can pursue night feedings and still possibly maintain feeding during the day but I have a sinking feeling that if we pursue this option Jonah will have it for life and it will affect his ability to eat independently.
So, after discussing options the doctor agreed to pursue a couple of tests to see if the problem is related to his fundo. First, we will do an upper GI study to see if any hernias have developed due to the procedure. If nothing is found that could be causing issues we will then do an endoscopy to see if the fundo is correctly positioned. If this also shows nothing and in three months Jonah has not gained weight....they will start the discussion of G-tube.
I can definitely say I am stressed out. We have three months to get weight on Jonah. The GI doc did give us two cans of DuoCal and asked that we start adding a few scoops to everything he eats (Noah too). She said the DuoCal should be more easily digested then the Benecalorie that Noah was on for such a long time. I hope that both boys will tolerate the DuoCal and that it will help both gain weight. Also, for the first and only time, I hope that something will be found with these tests that can give us a definitive reason as to why Jonah has suddenly lost his appetite. There is no real reason for his weight loss other then something related to his fundo surgery from August.
After GI we went to see the surgeon who did Jonah's fundo and he basically agreed with GI and even made the frustrating comment that he really did not understand what was going on with Jonah. He said that loss of appetite is not a common risk of a fundoplication and he certainly does not understand why this has become an issue for Jonah.
Please, pray for Jonah. Pray for all of us. We really need these next three months to make the difference. We are trying so hard and have fought so much and given so much time and effort toward preventing him from ending up with a feeding tube.
Jonah also saw his eye specialist. Everything is fine from his November surgery. His specialist felt that his eyes showed improvement and was pleased with how well he seems to be using both eyes since the procedure.
After, we delivered hygiene kits that our church ward Relief Society assembled to the Bishop's Storehouse in Fresno to be distributed to those in need. We finally got on the road toward home a bit after 1:00 pm.
It was definitely a long day. Noah has much less tolerance for these visits. He does not handle having to be in one place without roaming around freely well AT ALL. In fact, I think the GI doc's comment about Noah's behavior today was, "Well...he certainly is wild isn't he?" Yeah, he is. He is a typical, high energy, in to everything two year old and spends only a few seconds on any one given thing.
So I am glad to be home. I am going to bed and then we will start the process again tomorrow. Oh! We also got Jonah transitioned to a big boy bed. He is now officially downstairs in his own room with his own set of big boy furniture. We set up the side rail tonight and washed his quilt and sheets. Tomorrow will be his first night in his own room. Such a big step! Eventually in the coming months we will transition Noah too. Right now, he would be much too big of a trouble maker to take him out of his crib.
That is the latest in the Hanna home. We hope you are enjoying the Christmas season. We love Christmas here in our home.
God bless everyone. Please keep our family in your prayers.
Friday, December 11, 2009
The war is on.
These kids and their constant up and down eating habits are definitely wearing on the nerves. =)
Do you like the photos that show what the boys look like after eating? Today, Noah was in the mood to slap the spoon away and fling any food that got near his mouth all over the place. Fun stuff. Jonah loves to move his head everywhere in an attempt to avoid being fed and if we try and hold his head in place we get lots of screaming. We have to weigh which is worse, the screaming or a messy child once feeding is done (I will take the mess any day).
This IS worth the sacrifice. I keep telling myself that every day my boys are spared a feeding tube is a blessing and I HAVE to move forward with faith that some day it will pay off!
These kids and their constant up and down eating habits are definitely wearing on the nerves. =)
Do you like the photos that show what the boys look like after eating? Today, Noah was in the mood to slap the spoon away and fling any food that got near his mouth all over the place. Fun stuff. Jonah loves to move his head everywhere in an attempt to avoid being fed and if we try and hold his head in place we get lots of screaming. We have to weigh which is worse, the screaming or a messy child once feeding is done (I will take the mess any day).
This IS worth the sacrifice. I keep telling myself that every day my boys are spared a feeding tube is a blessing and I HAVE to move forward with faith that some day it will pay off!
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