It has been a very busy week.
Tuesday we had an upper GI exam for Jonah. It was an interesting experience. The radiologist kept questioning how I knew that Jonah had GERD (ha ha ha). I told him that Jonah had undergone every test possible confirming that he did, not to mention his nasty vomiting spells. He asked if Jonah had ever had pneumonia or was not gaining weight. I told him no and he assured me I did not need to worry about his reflux UNTIL he had Jonah drink water after his bottle of barium (I warned the technician he would not keep it down), Jonah threw up all over everything and managed to also hit the wall a few feet in front of him. The radiologist turned to me and said, "Oh yes, he has reflux and I can see why you are worried." Um, yes. Good grief, I guess it took for him to see just how bad Jonah's vomiting spells were to really understand the situation. I felt the exam was a bit useless as it really only confirmed what we already knew, yes it was good to confirm that nothing was wrong with Jonah's esophagus or the upper part of his digestive tract (we already knew his esophagus was fine from the swallow study he had a few months ago) but confirming the GERD seemed a waste of time. I hate making a four hour round trip road trip to find something out I already knew.
The week went on today as we traveled for the first time to the UCLA Center for Cerebral Palsy. We met with a team which consisted of an orthopedic surgeon, neurologist and physical therapist. It was very helpful and very informative. They did confirm much of what we already knew but we did learn some new, helpful information. The neurologist said that she felt there was definitely intelligence within Jonah, yes his body may have significant physical disabilities but he internally had intelligence and our job would be to help him develop that. Also, she said it was very important to help others realize that Jonah was an intelligent child and that they should treat him as normally as possible, even though many would at first glance think that he may not be capable because of his physical disabilities. They said that his muscle tone was good, not much sign yet of spasticity but the PT did say she saw some tightness in his ankles and to talk with our therapists about this. They were glad to hear we had some home equipment, including a stander. I told them we used it as often as possible and they encouraged us to continue this. Interesting enough, they discouraged the use of hip helpers. They said that the long term use of these could actually cause issues with Jonah's hip alignment and they encouraged us to use them only in a therapy setting. I asked about Jonah's hand splint and the PT encouraged us to again only use it in a therapy setting and not all day because Jonah needs the sensory input from using the hand as much as possible. They had very interesting views on the NAPA program. The PT basically said it was too expensive and not appropriate for a young child. She felt that the long term benefits were not enough to justify the cost and also pointed out that there is no research supporting that it is affective in young children. We asked about stem cell treatments and the answer was that the science is just not there yet and to not pursue any international or experimental treatments. The neurologist confirmed that Duke University would be our best reference for such treatments/research. We also asked about Childrens Madera and mentioned that we were seriously considering surgery for Jonah (the Nissen Fundoplication) and the orthopedic surgeon said that he was impressed with the hospital and that every child they had seen who had been treated there was well taken care of. This is always good to hear!
We also got some excellent tips from the PT regarding adaptive play equipment for Jonah. She is going to email us information about how to adjust one of our home lap tops so that it can play interactive software for Jonah and we are going to locate switches that he can use.
Of everything we discussed it seemed the most important message was communication and the development of Jonah's intelligence. Everyone stressed the importance of helping Jonah learn to interpret and understand his environment, to begin to communicate to us his wants and needs.
We have a lot to look in to but we will begin a few steps at a time and move on to help Jonah make progress.
Tomorrow we have therapy first thing in the morning, play group at 11:00 and I have to head to the grocery store to get ingredients for a salad I have to make for a church women's activity tomorrow night. I have a hair cut tomorrow afternoon and then feeding therapy at 4:00. Talk about a busy day!
We have had Grandma and Grandpa Langston this week and it is wonderful to have both, they leave on Saturday. We will all miss them very much. Next week Aunt Valerie comes in to town and then I will head back east to see her with my cousin Bonnie. This summer has just flown by!
I will post more later this week.
Wednesday, July 29, 2009
Friday, July 24, 2009
The update for our Wednesday appointment is as follows. The surgeon we met with only does the Nissen Fundoplication (he also did Jonah's stoma and his take down, the take down left an awful scar......definitely not impressed with that. I can't help but wonder if it is because he is a younger surgeon, who knows....I do know the surgery was difficult and took 4 hours so maybe the outcome was just what it would be even with a different surgeon).
He has particular views about the Toupe Fundo, he feels it is just not affective at all and can require more procedural work down the road to keep it functioning. The Nissen is supposed to be more affective. I stressed to him that we would absolutely not agree to any of it if it affected Jonah's ability to eat. He said he has almost never taken a child in for surgery and then had to return to place a g-tube because it affected their eating. He did say that it was possible down the road as Jonah started eating more lumpier, thicker foods (steak, etc.) that they may need to scope the tube they place to widen it because sometimes patients get this "stuck feeling" when food goes down. Apparently the Nissen surgery he performs includes the placement of a tube so that the tightening cannot completely close off the stomach or end up tight enough that it affects the feeding. He went in to great depth about the surgery, including drawing diagrams and showing us exactly what would happen, some of the complications, etc. Overall it is just a scary, scray procedure. I won't lie. Especially since Jonah has already had three abdominal surgeries. *Sigh* He has a higher risk for complications. Usually they do the surgery by laborascopy but in Jonah's case more then likely they would have to do another, yes another, incision in his belly because of all his scar tissue, etc. Another scar! This poor baby has so many to start with!
I did like that this surgeon encouraged us to get a second opinion and said we should absolutely not pursue the surgery until we 100% knew it should be done. He stressed it was a serious procedure that could take Jonah up to a week to heal from. I did ask him how many of these surgeries he had performed, he said probably some were near 100. He has only been in practice for 6 years. I told him all the research we had read said the more experience a surgeon has with this surgery the better the outcome and he agreed that could be the case. He was confident in his ability but said that if it helped us make a decision we should meet with his partner and ask his opinion about the surgery.
Shane and I really wish we could talk with a surgeon that does both the Toupe and the Nissen. I don't know if the Madera hospital does the partial though. The partial does have it's controversy, mostly that it ends up in the long term not being as affective as the Nissen.
Next Tuesday we are getting an upper GI done for Jonah just to assure that he does not have any blockage in the upper intestine. Also, the surgeon wanted to repeat the milk scan for Noah to see if his empyting has improved any. We are in the process of trying to meet with Dr. Hodges for a second opinion. Apparently this surgeon does surgery at the hospital but opened his private practice separate from the clinic so it will be good to get a different perspective.
So all in all, we have a lot to talk and think about. Pray about too. =)
I think in our discussions we feel that Jonah has more of a potential long term issue going on then Noah (the surgeon talked about the Nissen for both boys). Even the surgeon mentioned that almost always the CP or neurologically impaired kids have long term reflux issues and GI has been telling us that for months.
We have a lot on our plates. Making a decision is going to take lots of thought. So pray for us that we will be guided. =)
We also met with Jonah's neurosurgeon again. I heard Tuesday from Dr. Kelly (Jonah's eye specialist) and she said she was concerned reviewing the radiologist report that Jonah's fourth ventricle showed some enlargement. She said that would be the area that would affect the vision and also the leaning to one side (which Jonah has a tendency to lean to his weaker side, the left). I was in all a panic thinking the neurosurgeon did not take the time to really study the MRI. Dr. Kelly said she would contact Dr. Magram for a more detailed explanation of what he saw going on and I called immediately after our phone call and spoke with the neurosurgery clinic. They invited us to stop by on Wednesday so Dr. Magram could speak to us in person. On Wednesday, he said that the enlargening was just a few millimeter's of change which can be due to the head positioning this MRI compared to last. He even pulled up the MRI and showed us the area of concern. He told us both that for now we did not need to be concerned and bumped up Jonah's follow-up from 6 months to 3 months just to be sure that nothing is really going on. He was satisfied that everything was just fine. We do meet with a neurologist and neurosurgeon next week at UCLA so we will see what they say.
It was a busy, busy day with a lot of information but it went well. We just have a lot of decision making now.
Wednesday night was interesting. Both boys had a vomiting fest. Jonah threw up, Noah threw up, Jonah gagged himself and threw up again because he wasn't getting attention and then Noah threw up all over me, projectile....in my mouth, everything. It was so disgusting and my Dad and I were just drained. I swear that night I was like, "Ok....I am DONE. I can't handle this anymore." It's nights like that which are just tough, tough and I want to throw in the towel and sign up now for surgery. I know that is not the right decision and we are going to make sure and exhaust every avenue before surgery but some times, it is tough.
We still need to do the food allergy test for the boys and then finish the upper GI to make sure nothing is obstructed for Jonah.
I wanted to include a Wikipedia description of the fundos that I have been discussing for those who do not know what type of surgery this is:
Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. In GERD it is usually performed when medical therapy has failed, but with paraesophageal hiatus hernia, it is the first-line procedure. The Nissen fundoplication is total (360º), but partial fundoplications known as Belsey fundoplication (270º), Dor fundoplication (anterior 180º) or Toupet fundoplication (posterior 180º) are also alternative procedures with somewhat different indications.
He has particular views about the Toupe Fundo, he feels it is just not affective at all and can require more procedural work down the road to keep it functioning. The Nissen is supposed to be more affective. I stressed to him that we would absolutely not agree to any of it if it affected Jonah's ability to eat. He said he has almost never taken a child in for surgery and then had to return to place a g-tube because it affected their eating. He did say that it was possible down the road as Jonah started eating more lumpier, thicker foods (steak, etc.) that they may need to scope the tube they place to widen it because sometimes patients get this "stuck feeling" when food goes down. Apparently the Nissen surgery he performs includes the placement of a tube so that the tightening cannot completely close off the stomach or end up tight enough that it affects the feeding. He went in to great depth about the surgery, including drawing diagrams and showing us exactly what would happen, some of the complications, etc. Overall it is just a scary, scray procedure. I won't lie. Especially since Jonah has already had three abdominal surgeries. *Sigh* He has a higher risk for complications. Usually they do the surgery by laborascopy but in Jonah's case more then likely they would have to do another, yes another, incision in his belly because of all his scar tissue, etc. Another scar! This poor baby has so many to start with!
I did like that this surgeon encouraged us to get a second opinion and said we should absolutely not pursue the surgery until we 100% knew it should be done. He stressed it was a serious procedure that could take Jonah up to a week to heal from. I did ask him how many of these surgeries he had performed, he said probably some were near 100. He has only been in practice for 6 years. I told him all the research we had read said the more experience a surgeon has with this surgery the better the outcome and he agreed that could be the case. He was confident in his ability but said that if it helped us make a decision we should meet with his partner and ask his opinion about the surgery.
Shane and I really wish we could talk with a surgeon that does both the Toupe and the Nissen. I don't know if the Madera hospital does the partial though. The partial does have it's controversy, mostly that it ends up in the long term not being as affective as the Nissen.
Next Tuesday we are getting an upper GI done for Jonah just to assure that he does not have any blockage in the upper intestine. Also, the surgeon wanted to repeat the milk scan for Noah to see if his empyting has improved any. We are in the process of trying to meet with Dr. Hodges for a second opinion. Apparently this surgeon does surgery at the hospital but opened his private practice separate from the clinic so it will be good to get a different perspective.
So all in all, we have a lot to talk and think about. Pray about too. =)
I think in our discussions we feel that Jonah has more of a potential long term issue going on then Noah (the surgeon talked about the Nissen for both boys). Even the surgeon mentioned that almost always the CP or neurologically impaired kids have long term reflux issues and GI has been telling us that for months.
We have a lot on our plates. Making a decision is going to take lots of thought. So pray for us that we will be guided. =)
We also met with Jonah's neurosurgeon again. I heard Tuesday from Dr. Kelly (Jonah's eye specialist) and she said she was concerned reviewing the radiologist report that Jonah's fourth ventricle showed some enlargement. She said that would be the area that would affect the vision and also the leaning to one side (which Jonah has a tendency to lean to his weaker side, the left). I was in all a panic thinking the neurosurgeon did not take the time to really study the MRI. Dr. Kelly said she would contact Dr. Magram for a more detailed explanation of what he saw going on and I called immediately after our phone call and spoke with the neurosurgery clinic. They invited us to stop by on Wednesday so Dr. Magram could speak to us in person. On Wednesday, he said that the enlargening was just a few millimeter's of change which can be due to the head positioning this MRI compared to last. He even pulled up the MRI and showed us the area of concern. He told us both that for now we did not need to be concerned and bumped up Jonah's follow-up from 6 months to 3 months just to be sure that nothing is really going on. He was satisfied that everything was just fine. We do meet with a neurologist and neurosurgeon next week at UCLA so we will see what they say.
It was a busy, busy day with a lot of information but it went well. We just have a lot of decision making now.
Wednesday night was interesting. Both boys had a vomiting fest. Jonah threw up, Noah threw up, Jonah gagged himself and threw up again because he wasn't getting attention and then Noah threw up all over me, projectile....in my mouth, everything. It was so disgusting and my Dad and I were just drained. I swear that night I was like, "Ok....I am DONE. I can't handle this anymore." It's nights like that which are just tough, tough and I want to throw in the towel and sign up now for surgery. I know that is not the right decision and we are going to make sure and exhaust every avenue before surgery but some times, it is tough.
We still need to do the food allergy test for the boys and then finish the upper GI to make sure nothing is obstructed for Jonah.
I wanted to include a Wikipedia description of the fundos that I have been discussing for those who do not know what type of surgery this is:
Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. In GERD it is usually performed when medical therapy has failed, but with paraesophageal hiatus hernia, it is the first-line procedure. The Nissen fundoplication is total (360º), but partial fundoplications known as Belsey fundoplication (270º), Dor fundoplication (anterior 180º) or Toupet fundoplication (posterior 180º) are also alternative procedures with somewhat different indications.
Thursday, July 23, 2009
Enjoying Princeton!
Our friend Amy brought over her adorable new puppy, named Princeton. I wanted to see how the boys did with him, especially Jonah as some day we may get him a guide dog or just small toy dog for company and friendship. They loved to pet him! He even nibbled a bit on Jonah's fingers but Jonah was really good about it. I think he was definitely a hit!
Our friend Amy brought over her adorable new puppy, named Princeton. I wanted to see how the boys did with him, especially Jonah as some day we may get him a guide dog or just small toy dog for company and friendship. They loved to pet him! He even nibbled a bit on Jonah's fingers but Jonah was really good about it. I think he was definitely a hit!
Getting in to trouble. Noah loves picking up every stray piece of well, anything, and carrying it around in his mouth...he is so funny! He reminds me of a little puppy sometimes! He also loves our pull out cupboards, too bad Daddy quickly put an end to that and put latches on. But no worries, Noah is very creative in finding fun in all kinds of interesting places (and in the mean time keeping us on our toes!)
More photos of Jonah playing in the fridge in his stander, practicing strengthening his legs! Also, we found these great light up cubes on www.blinkingflashinglights.com. Jonah loves them! They are great for fine motor skills and Jonah is working on picking up cubes/pegs in OT right now plus putting things in bowls and taking them out so these really get his attention. Sorry everyone for the not so attractive tape you see with Jonah's glasses, we are trying this new technique to teach him he has to keep his glasses on while at home. Hopefully he will soon get out of the habit of taking them off and we can do away with the tape!
Playing in the fridge. I got this great idea from our good friend Amanda (thanks!) to let Jonah play in the fridge so he can experiment with the different containers and also help with the concept of hot and cold. He loves it, especially to taste jam! Of course where Jonah goes brother must go too, so Noah is joining in the fun!
Monday, July 20, 2009
Just a quick update.
I placed another call to Duke University today regarding stem cell treatments for Jonah. I last spoke with their pediatric stem cell research department this past spring. I decided since it has been a few months I would call and see if any advances have been made.
I was told that the leading research doctor, Joanne Kurtzberg, is working hard to make donor and sibling match stem cell transfusions safely available. Right now, Jonah would still have to undergo the chemo in order for his body to accept the host stem cells.
It is disappointing. I want to take action more than anything to help Jonah in his progress but there is only so much I can do at this point.
Our insurance is reviewing the Theratogs (and I am afraid they will end up denying). It would be heaven's blessing if they chose to pay a percentage of the cost. At least we can get something therapeutic going for Jonah. The costliness of NAPA is out of reach for several more months and everything depends on where we stand after Shane gets his company bonus (it doesn't help that Langers is being affected like everyone else with this poor economy and company bonuses may not be that impressive this year). At least with the Theratogs we could get something going for Jonah right now.
So for now, the best we can do is pray that science makes significant progress in the next year or two so Jonah can undergo a life changing stem cell treatment.
I placed another call to Duke University today regarding stem cell treatments for Jonah. I last spoke with their pediatric stem cell research department this past spring. I decided since it has been a few months I would call and see if any advances have been made.
I was told that the leading research doctor, Joanne Kurtzberg, is working hard to make donor and sibling match stem cell transfusions safely available. Right now, Jonah would still have to undergo the chemo in order for his body to accept the host stem cells.
It is disappointing. I want to take action more than anything to help Jonah in his progress but there is only so much I can do at this point.
Our insurance is reviewing the Theratogs (and I am afraid they will end up denying). It would be heaven's blessing if they chose to pay a percentage of the cost. At least we can get something therapeutic going for Jonah. The costliness of NAPA is out of reach for several more months and everything depends on where we stand after Shane gets his company bonus (it doesn't help that Langers is being affected like everyone else with this poor economy and company bonuses may not be that impressive this year). At least with the Theratogs we could get something going for Jonah right now.
So for now, the best we can do is pray that science makes significant progress in the next year or two so Jonah can undergo a life changing stem cell treatment.
Sunday, July 19, 2009
Finally I am getting around to updating our blog.
This week was just crazy. We headed down to Fresno Wednesday afternoon. We spent the evening with the boys (Grandpa and I) in a hotel and early Thursday morning Jonah went in for his GI study. Just as we were leaving Fresno I thought I would try radiology one more time about fitting us in for an MRI. Wouldn't you know it, out of the dozen times I called this week they finally fit us in for Friday. I had to laugh as we scrambled to call the hotel back and make another reservation plus return and get ourselves settled (again). The boys did ok, definitely not great, especially Noah in such a small space but we got through things.
The GI results showed that Jonah has GED (gastric emptying delay), the very same issue as Noah. He digested about 39% of his food over 1.5 hours when they expect to see 65% or higher. *Sigh* I guess this doesn't surprise me. I spoke with the GI nurse Friday and she started Jonah on the erythromicin that Noah is currently taking to see if it can't speed up his stomach motility. Jonah's MRI Friday went well (thank goodness as they have to put him out and use an LMA, which is a less invasive procedure then intubating), there was no change from December. The neurosurgeon did say that Jonah's shunt appeared to be possibly occluded (slightly) but because he is not symptomatic he is not going to touch anything until he shows us that his shunt is really not working. There are a few water bags throughout the brain area (due to his hydrocephalus) and one in particular is hanging out in the back of his head in front of the occipital lobe. I talked to the neurosurgeon about Jonah's eye specialist being worried about his vision and he mentioned that this water bag definitely could be causing issues. As I was driving home, I thought, "why can't this area be drained?" Of course I thought of it after the fact! Obviously the neurosurgeon would have done this long ago if it were an option and I am assuming it is just too risky/dangerous. I have not heard from Jonah's eye specialist (Dr. Kelly) so I will ask her this very question and we see UCLA in a week and a half and I plan to ask them too. It might seem to them like a silly question but I would really like to know why nothing can be done about these water pockets.
I found out something else that had me upset about Jonah's neurosurgeon. One of the MRI nurses told me in very hushed tones (off the record) that they have been having problems with the shunt that Dr. Magram uses because it is not very common in the field so when a lot of patients relocate their new specialists have issues with the system. We saw this happen at CHLA when the boys were transferred for their eye surgery. It angers me because we will not be staying in Bakersfield forever and at some point we will relocate to an area with a good children's hospital. The nurse did say that because Jonah has the Pro-Gav shunt he may face more procedures then are necessary because if it malfunctions the whole system will probably need to come out and replacing it is always more risky. I just can't believe this, I guess I had an idea after what we went through in Los Angeles but why does this specialist not use a more common shunt system? Wouldn't that be in the best interest of the patient?
So for now, we pray that Jonah will face minimal surgeries when it comes to his shunt.
This Wednesday we go to see the pediatric surgeon about Jonah and Noah. He will talk to us about their vomiting problems. We are simply there to gather information and decide if surgery is really the best option to help correct the constant throwing up.
Poor Jonah has been sick all week with a cold and it has gotten worse. Noah started up this morning with a runny nose so now we are watching him too. I almost took Jonah down yesterday to Fresno but after a phone call to the nurse she just encouraged us to watch him since he does not have a fever. Hopefully this will resolve before it becomes too serious.
Grandma Langston flies in Saturday to Burbank. We plan to pick her up and then go to the beach for the day. It will be fun.
So that is the latest, as I hear from Dr. Kelly (Jonah's eye specialist) I will post more about his MRI.
This week was just crazy. We headed down to Fresno Wednesday afternoon. We spent the evening with the boys (Grandpa and I) in a hotel and early Thursday morning Jonah went in for his GI study. Just as we were leaving Fresno I thought I would try radiology one more time about fitting us in for an MRI. Wouldn't you know it, out of the dozen times I called this week they finally fit us in for Friday. I had to laugh as we scrambled to call the hotel back and make another reservation plus return and get ourselves settled (again). The boys did ok, definitely not great, especially Noah in such a small space but we got through things.
The GI results showed that Jonah has GED (gastric emptying delay), the very same issue as Noah. He digested about 39% of his food over 1.5 hours when they expect to see 65% or higher. *Sigh* I guess this doesn't surprise me. I spoke with the GI nurse Friday and she started Jonah on the erythromicin that Noah is currently taking to see if it can't speed up his stomach motility. Jonah's MRI Friday went well (thank goodness as they have to put him out and use an LMA, which is a less invasive procedure then intubating), there was no change from December. The neurosurgeon did say that Jonah's shunt appeared to be possibly occluded (slightly) but because he is not symptomatic he is not going to touch anything until he shows us that his shunt is really not working. There are a few water bags throughout the brain area (due to his hydrocephalus) and one in particular is hanging out in the back of his head in front of the occipital lobe. I talked to the neurosurgeon about Jonah's eye specialist being worried about his vision and he mentioned that this water bag definitely could be causing issues. As I was driving home, I thought, "why can't this area be drained?" Of course I thought of it after the fact! Obviously the neurosurgeon would have done this long ago if it were an option and I am assuming it is just too risky/dangerous. I have not heard from Jonah's eye specialist (Dr. Kelly) so I will ask her this very question and we see UCLA in a week and a half and I plan to ask them too. It might seem to them like a silly question but I would really like to know why nothing can be done about these water pockets.
I found out something else that had me upset about Jonah's neurosurgeon. One of the MRI nurses told me in very hushed tones (off the record) that they have been having problems with the shunt that Dr. Magram uses because it is not very common in the field so when a lot of patients relocate their new specialists have issues with the system. We saw this happen at CHLA when the boys were transferred for their eye surgery. It angers me because we will not be staying in Bakersfield forever and at some point we will relocate to an area with a good children's hospital. The nurse did say that because Jonah has the Pro-Gav shunt he may face more procedures then are necessary because if it malfunctions the whole system will probably need to come out and replacing it is always more risky. I just can't believe this, I guess I had an idea after what we went through in Los Angeles but why does this specialist not use a more common shunt system? Wouldn't that be in the best interest of the patient?
So for now, we pray that Jonah will face minimal surgeries when it comes to his shunt.
This Wednesday we go to see the pediatric surgeon about Jonah and Noah. He will talk to us about their vomiting problems. We are simply there to gather information and decide if surgery is really the best option to help correct the constant throwing up.
Poor Jonah has been sick all week with a cold and it has gotten worse. Noah started up this morning with a runny nose so now we are watching him too. I almost took Jonah down yesterday to Fresno but after a phone call to the nurse she just encouraged us to watch him since he does not have a fever. Hopefully this will resolve before it becomes too serious.
Grandma Langston flies in Saturday to Burbank. We plan to pick her up and then go to the beach for the day. It will be fun.
So that is the latest, as I hear from Dr. Kelly (Jonah's eye specialist) I will post more about his MRI.
Wednesday, July 15, 2009
Great news: Jonah sat today, using his hands for assistance, for 30 seconds (no help!) Hurrah! We are proud of the little steps he has been taking. He is slowly getting stronger.
We are off in the next few minutes to Fresno. We will be staying at the Residence Inn near the hospital because our appointment for Jonah is first thing in the morning. We were not able to get the MRI (unfortunately) scheduled so we are having to wait that one out until the end of August.
Jonah undergoes his GI study tomorrow to determine if he has GED (gastric emptying delay). As you may recall, Noah had this test several months ago and his test came back showing what little he digests over a period of time compared to a normal child. He has been on erythromycin ever since (not sure still if it totally helps or not).
I will let you know how things come out.
We are off in the next few minutes to Fresno. We will be staying at the Residence Inn near the hospital because our appointment for Jonah is first thing in the morning. We were not able to get the MRI (unfortunately) scheduled so we are having to wait that one out until the end of August.
Jonah undergoes his GI study tomorrow to determine if he has GED (gastric emptying delay). As you may recall, Noah had this test several months ago and his test came back showing what little he digests over a period of time compared to a normal child. He has been on erythromycin ever since (not sure still if it totally helps or not).
I will let you know how things come out.
Monday, July 13, 2009
We are back in the game and getting in to the swing of things here in Bakersfield. This morning both boys had occupational therapy at Terrio. After, we went to our pool play group and enjoyed ourselves. Jonah has been a bit cranky the past two days (teething, allergies that make his reflux so much more intense) but he still enjoyed splashing around in the pool.
It was good to see my babies again. Noah looks like his cheeks have gotten chubbier and his personality exploded last week. He is trying to mimic everything we do and has "bye bye" down with a hand wave, plus "ank you" for thank you, mom and dad, pa-pa for Grandpa (while pointing). He really is exploring all kinds of sounds and this is exciting. He loves to jabber when playing with his toys. The BEST news is that he is taking steps all over the place. In fact, Grandma Hanna told me that Friday he took 11 steps at therapy for the therapist. He will take a few steps from the couch to toys, etc. It is so exciting to see!! We are getting so close to full mobility. I am a bit scared! We finally took down the gate and we are just letting Noah roam and he is in heaven to have such freedom.
Jonah is as sweet as ever, despite his fussy moments. We are continuing to use his stander every day in hopes it will start helping him learn to stand. We are continuing to research NAPA and are shooting for winter of 2010 to do the 3-4 week program. I did research a couple of grant programs suggested by the NAPA coordinator we have been in touch with but of course we are not eligible. So for now, we are on for winter 2010.
The Harry Potter party was a hit! I wish I would have taken a photo of the treat table, it turned out really cute. I used a clearance material I found at Joann's (pretty see through orange with glittered gems on top of a black dollar store table cloth) with adorable pumpkins I found at Michaels and pretty votive candle holders. It all came off looking very respectably like a Hogwarts banquet table. Everyone enjoyed themselves, including the two young men that came. The girls won the game (yeah) and were able to get themselves their own Harry Potter light up wands. All in all, everyone had fun. We have our tickets for Friday night and tonight we are making chocolate frogs and jelly belly goodie bags with Harry Potter glasses to hand out to our group that is coming. I am excited and the movie reviews have been good! They are calling this the best movie yet.
For now, I will sign off but look for updates this week as we have Jonah's GED (gastric emptying delay) study Thursday and if there are cancellations we will get in for an MRI Wednesday (hopefully). We will stay down in a hotel Wednesday night so we can just hop over to the hospital at 8:00 in the morning. I also have blood work here from the GI clinic to test the boys for food allergies. We are ruling everything out as we meet next week with the pediatric surgeon about the pyloroplasty and possible fundoplication because of the boys constant vomiting issues. Jonah had his first throw up yesterday in nursery. He left an awful mess and I felt badly but Grandpa was there and handled things well. Jonah's one on one worker has not started in nursery yet as she is still recovering from surgery but I am looking forward to her working with Jonah as she is a very special lady and will work with him well. So be praying for both boys that we find some answers to their GI issues, we will get to the bottom of this yet!
It was good to see my babies again. Noah looks like his cheeks have gotten chubbier and his personality exploded last week. He is trying to mimic everything we do and has "bye bye" down with a hand wave, plus "ank you" for thank you, mom and dad, pa-pa for Grandpa (while pointing). He really is exploring all kinds of sounds and this is exciting. He loves to jabber when playing with his toys. The BEST news is that he is taking steps all over the place. In fact, Grandma Hanna told me that Friday he took 11 steps at therapy for the therapist. He will take a few steps from the couch to toys, etc. It is so exciting to see!! We are getting so close to full mobility. I am a bit scared! We finally took down the gate and we are just letting Noah roam and he is in heaven to have such freedom.
Jonah is as sweet as ever, despite his fussy moments. We are continuing to use his stander every day in hopes it will start helping him learn to stand. We are continuing to research NAPA and are shooting for winter of 2010 to do the 3-4 week program. I did research a couple of grant programs suggested by the NAPA coordinator we have been in touch with but of course we are not eligible. So for now, we are on for winter 2010.
The Harry Potter party was a hit! I wish I would have taken a photo of the treat table, it turned out really cute. I used a clearance material I found at Joann's (pretty see through orange with glittered gems on top of a black dollar store table cloth) with adorable pumpkins I found at Michaels and pretty votive candle holders. It all came off looking very respectably like a Hogwarts banquet table. Everyone enjoyed themselves, including the two young men that came. The girls won the game (yeah) and were able to get themselves their own Harry Potter light up wands. All in all, everyone had fun. We have our tickets for Friday night and tonight we are making chocolate frogs and jelly belly goodie bags with Harry Potter glasses to hand out to our group that is coming. I am excited and the movie reviews have been good! They are calling this the best movie yet.
For now, I will sign off but look for updates this week as we have Jonah's GED (gastric emptying delay) study Thursday and if there are cancellations we will get in for an MRI Wednesday (hopefully). We will stay down in a hotel Wednesday night so we can just hop over to the hospital at 8:00 in the morning. I also have blood work here from the GI clinic to test the boys for food allergies. We are ruling everything out as we meet next week with the pediatric surgeon about the pyloroplasty and possible fundoplication because of the boys constant vomiting issues. Jonah had his first throw up yesterday in nursery. He left an awful mess and I felt badly but Grandpa was there and handled things well. Jonah's one on one worker has not started in nursery yet as she is still recovering from surgery but I am looking forward to her working with Jonah as she is a very special lady and will work with him well. So be praying for both boys that we find some answers to their GI issues, we will get to the bottom of this yet!
Friday, July 10, 2009
It is hard to believe that we have reached the end of our week here in Utah.
My mother's oncologist appointment went well on Wednesday. I was able to meet her specialist and was impressed with her kindness. As I stated in an earlier email, her cancer has not returned. For this we are grateful and count our blessings. We did discuss some other worries with her and she encouraged my mom to return to her pulmonologist for her breathing issues.
My father and I spent most of the week together as my mom has her volunteer activities which she does not like to be away from. We did have her Thursday and Monday, she is also home today so I am grateful for this. We did a lot of weeding this week and were able to prune, weed and get the front yard mostly in shape and sections of the back as well.
I also saw my sweet friends Kim (Checketts) Futey, Bonnie (Freeman) Morgan and Katie (Edwards) Bakker, all of them are the best of women and have hearts of gold. How blessed I am to have good friendships. I look back on my high school years and consider myself lucky to have been surrounded with good, christian girls who upheld their standards and never asked me to compromise mine. You may also know that Bonnie is my cousin through my mother's side, but she may as well be a sister. In fact, this week I finalized DC/NY plans and Bonnie and I are going to see the Little Mermaid while in New York. We got great seats (a only so often opportunity as I do not get out to the east often) and our Statue of Liberty tickets are booked. I am sad to say that we are not able to tour the crown as all those tickets were sold out through September. However, we did get crowns to go in to her pedestal and look up through her interior....that also was not an option because of 09/11 until the past couple of weeks. So either way, I am thrilled!
I cannot believe how fast this summer has gone by. It truly has flown. I knew as soon as my dad came out that the time would go quickly and it has! I look forward to my baby sister coming August 6th and then shortly after she leaves I head back to Washington, D.C. to spend a week with her. Before I know it, this summer is going to be over!!
So for now, I have to sign out so I can pack up my things and head home. I was just watching some of the blog videos of the boys and looking at their photos. It will be good to get home and give them hugs and kisses as I have missed them.
Our Harry Potter evening is tomorrow! I was able to do some shopping this week and I think I have things in order. I just need to do some cooking/cleaning tomorrow and setting up for the big night.
My mother's oncologist appointment went well on Wednesday. I was able to meet her specialist and was impressed with her kindness. As I stated in an earlier email, her cancer has not returned. For this we are grateful and count our blessings. We did discuss some other worries with her and she encouraged my mom to return to her pulmonologist for her breathing issues.
My father and I spent most of the week together as my mom has her volunteer activities which she does not like to be away from. We did have her Thursday and Monday, she is also home today so I am grateful for this. We did a lot of weeding this week and were able to prune, weed and get the front yard mostly in shape and sections of the back as well.
I also saw my sweet friends Kim (Checketts) Futey, Bonnie (Freeman) Morgan and Katie (Edwards) Bakker, all of them are the best of women and have hearts of gold. How blessed I am to have good friendships. I look back on my high school years and consider myself lucky to have been surrounded with good, christian girls who upheld their standards and never asked me to compromise mine. You may also know that Bonnie is my cousin through my mother's side, but she may as well be a sister. In fact, this week I finalized DC/NY plans and Bonnie and I are going to see the Little Mermaid while in New York. We got great seats (a only so often opportunity as I do not get out to the east often) and our Statue of Liberty tickets are booked. I am sad to say that we are not able to tour the crown as all those tickets were sold out through September. However, we did get crowns to go in to her pedestal and look up through her interior....that also was not an option because of 09/11 until the past couple of weeks. So either way, I am thrilled!
I cannot believe how fast this summer has gone by. It truly has flown. I knew as soon as my dad came out that the time would go quickly and it has! I look forward to my baby sister coming August 6th and then shortly after she leaves I head back to Washington, D.C. to spend a week with her. Before I know it, this summer is going to be over!!
So for now, I have to sign out so I can pack up my things and head home. I was just watching some of the blog videos of the boys and looking at their photos. It will be good to get home and give them hugs and kisses as I have missed them.
Our Harry Potter evening is tomorrow! I was able to do some shopping this week and I think I have things in order. I just need to do some cooking/cleaning tomorrow and setting up for the big night.
Monday, July 6, 2009
New York, New York!!!
I am thrilled out of my mind. My trip back to Washington, D.C. to see my sis' Valerie in August will also now include a stay near the Statue of Liberty and a tour of the sweet lady herself. I saw that they had reopened the crown this week and almost burst with want to be able to see her again. September 11th, 2001 happened in the fall before the spring that I moved back east so I never had the chance to climb Lady Liberty. We were able to get Val, her friend, my cousin and I in on the trip and with four of us chipping in the expenses won't be too bad.
Here I come! I am looking forward to the reunion!
I am thrilled out of my mind. My trip back to Washington, D.C. to see my sis' Valerie in August will also now include a stay near the Statue of Liberty and a tour of the sweet lady herself. I saw that they had reopened the crown this week and almost burst with want to be able to see her again. September 11th, 2001 happened in the fall before the spring that I moved back east so I never had the chance to climb Lady Liberty. We were able to get Val, her friend, my cousin and I in on the trip and with four of us chipping in the expenses won't be too bad.
Here I come! I am looking forward to the reunion!
Good news with the NAPA research. I heard back from the same parent whose Web site I checked (she said her son lost his skill after the 3 week program). Here is what she had to say:
After you do an intensive with Napa, they give you a book with a series of exercises that you’re meant to do daily to help your child maintain the skills he gained. Unfortunately we didn’t do exercises so Nathan. We were so overwhelmed with different treatments and modalities that we just couldn’t maintain the home program. I do think NAPA is EXCELLENT and one of the best out there.
Your plan sounds fantastic! If you are able to do it, you should see rapid progress in Jonah. How old is he?
My experience at Napa was excellent – everything about it. The therapists are fabulous – very skilled – but also very good with children. They kept Nathan entertained and happy. They were able to push him while keeping him happy. Nathan has worked with a lot of people, and I think of everyone that he’s seen, NAPA is the best.
Very encouraging! I told her we were planning on perhaps the 3 week program in January and then an every other month 4-hour session to help Jonah keep up his progress. I also plan to apply for some grants to see if we can't get some sponsorship for Jonah's therapy (NAPA provided me with two Web sites).
That is the latest and I am thrilled at this recent email. I am feeling very positive about this option.
After you do an intensive with Napa, they give you a book with a series of exercises that you’re meant to do daily to help your child maintain the skills he gained. Unfortunately we didn’t do exercises so Nathan. We were so overwhelmed with different treatments and modalities that we just couldn’t maintain the home program. I do think NAPA is EXCELLENT and one of the best out there.
Your plan sounds fantastic! If you are able to do it, you should see rapid progress in Jonah. How old is he?
My experience at Napa was excellent – everything about it. The therapists are fabulous – very skilled – but also very good with children. They kept Nathan entertained and happy. They were able to push him while keeping him happy. Nathan has worked with a lot of people, and I think of everyone that he’s seen, NAPA is the best.
Very encouraging! I told her we were planning on perhaps the 3 week program in January and then an every other month 4-hour session to help Jonah keep up his progress. I also plan to apply for some grants to see if we can't get some sponsorship for Jonah's therapy (NAPA provided me with two Web sites).
That is the latest and I am thrilled at this recent email. I am feeling very positive about this option.
Saturday, July 4, 2009
My Mother's test results came back and there is no sign of cancer at this time. What a sigh of relief. Her oncologist called her Thursday and let her know and then she passed the word along to us. My father and I still leave tomorrow to spend the week with my mother in Bountiful, UT. I am so excited to see family and friends. I have not seen my brother since the boys where in the NICU and it has been even longer since I have seen my nieces and sister-in-law. I also get to see my dear, sweet cousin Bonnie and my very close and dear friend Kim. I love both of these women and we have been in each others' lives for so many years and seen each other through so much.
We have our Harry Potter party this weekend so things will be pretty busy when we get back Friday night but I will try and post again as soon as I can.
God bless and thank you everyone for your prayers and concern on behalf of my mother.
We have our Harry Potter party this weekend so things will be pretty busy when we get back Friday night but I will try and post again as soon as I can.
God bless and thank you everyone for your prayers and concern on behalf of my mother.
Happy Fourth of July!
I love this holiday. I always reflect on the many freedoms that I enjoy as a citizen of this great country. I consider myself fortunate enough to have watched the John Adams series recently (produced by HBO) and it was marvelous. My great admiration of the founding fathers was renewed and I remember my testimony regarding the founding of this great nation by God fearing men.
Today was so much fun. We thank our dear friends for making today so enjoyable. We started out with our church pancake breakfast (Shane is Activity Chair so this was a big event for him) and then we cleaned the house very well until the afternoon. We then joined the Bonds, Hansons and Watsons at the Bonds' community pool. We had so much fun, the boys enjoyed themselves (as you can see below) and it made the hot weather bearable. We had good BBQ (including freshly husked corn, thanks Blaine!) and yummy burgers. Later we went back to our place for dessert and a movie before fireworks. We watched the babies play and where joined by yet more friends about 8:00 before starting the fireworks. All in all we had well over a dozen people that came to watch fireworks with us. It was a great show with Shane playing ringmaster.
It was a wonderful day and we are grateful we were able to celebrate the many freedoms that we have and remember how blessed we are to call this nation home.
I love this holiday. I always reflect on the many freedoms that I enjoy as a citizen of this great country. I consider myself fortunate enough to have watched the John Adams series recently (produced by HBO) and it was marvelous. My great admiration of the founding fathers was renewed and I remember my testimony regarding the founding of this great nation by God fearing men.
Today was so much fun. We thank our dear friends for making today so enjoyable. We started out with our church pancake breakfast (Shane is Activity Chair so this was a big event for him) and then we cleaned the house very well until the afternoon. We then joined the Bonds, Hansons and Watsons at the Bonds' community pool. We had so much fun, the boys enjoyed themselves (as you can see below) and it made the hot weather bearable. We had good BBQ (including freshly husked corn, thanks Blaine!) and yummy burgers. Later we went back to our place for dessert and a movie before fireworks. We watched the babies play and where joined by yet more friends about 8:00 before starting the fireworks. All in all we had well over a dozen people that came to watch fireworks with us. It was a great show with Shane playing ringmaster.
It was a wonderful day and we are grateful we were able to celebrate the many freedoms that we have and remember how blessed we are to call this nation home.
Wednesday, July 1, 2009
Two cute video clips of Noah. The first of his famous dancing moves, you can see him standing by himself in the video. Also, the other of his famous roaming the house antics! He loves walking around with his toy walker and squealing the entire time. As soon as this little guy starts doing both (walking unassisted and talking) we are in for a house full of constant chatter and chaos!
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