Interesting.....
In reading this new blog that I mentioned below the family mentions that after undergoing the intensive therapy at NAPA their son returned home and quickly lost all his new skills.
This is a concern Shane and I have and a good reason why we want more then just case studies for research.
I wish we lived closer as this could be integrated in to Jonah's weekly therapies so he was always using the suit and ever gaining strength.
It really is unfortunate that we are not independently wealthy, we could buy our own neurosuit!!
Tuesday, June 30, 2009
What an unpleasant surprise we woke up to this morning!!
Someone decided to trash the front of our home with eggs, cottage cheese, crackers, maple syrup, ketchup, you name it. It was an awful mess. Well, two hours of cleaning, phone calls to the police and local security that patrols our HOA we are finally wrapping things up. We don't even know any teenagers well enough to know who would have done this. It is pretty upsetting as we missed our play group, had to manage the school district vision specialist visiting in the middle of all of this plus figure out (thank goodness Grandpa is here) how to clean it all up before the ants settled in.
*Sigh*
One of these days luck will call us a friend and we'll stop having so many surprises. Perhaps I am just feeling a bit frustrated this morning. This afternoon can always be better. =)
George from the school district brought over a new, fun reflective toy for Jonah. I am planning to place it in his little room. He loves it. We also received a stander for Jonah yesterday. Finally!!! He actually stayed in it for about 20 minutes while Grandpa held his lap top so he could play before he started fussing, not bad for his first time! Hopefully we can get some good use out of this.
I have a cute video of Noah to post. He LOVES music (a true musician in the making) and will dance to any music, anywhere. He was both dancing and squealing through the music at church on Sunday. We are still working on what it means to be reverent at church, that may take some time!
Jonah is doing well, he is all smiles and cuddles as usual.
We found an incredible Web site for a child that has Cerebral Palsy (thanks Amanda). I don't think being a twin mom would allow me enough time to be as intensive as they have been but at least I can pull ideas from what they have learned. They are also fellow NAPA clients so I plan to email them about their experience with the program there. It is pretty amazing what they have done:
http://www.prayfornathan.org/blog/?page_id=327
I love to be associated with parents who pray, work hard and do all they can for their children while always believing in their potential. These babies come to us for a reason and while many people do not support or do not understand we gain testimonies of why they are with us. Just Sunday I was feeling frustrated at some of the stares our Jonah receives at church, I should not let little things get me so but I never understand when adults stare without shame at another person because of a disability. It just never ceases to amaze me. But I am learning. I can say that younger children are curious and that is why they look but adults should have enough life experience to know that they don't stare, gawk, or treat differently those with disabilities. After all, we as Christians all over the world believe that Christ loved everyone, lame or leper without reproach or judgement. That is our ultimate goal, is it not? I suppose I am once again learning patience and tolerance for those who do not understand.
I will have to post that video of Noah soon. Thanks everyone for your concern about my mother. She fell again last week. Shane and I ordered her the Life Line system so she can wear this at home and if she falls and is not able to get up she simply presses a button and is instantly connected with those who can help her and get her 911. To make matters worse her oncologist met with her last week and felt that her cancer may have returned. The doctor ordered an MRI as well as a Pet Scan. My dad and I are flying up this coming Sunday to be with her the week of the 6th so we can go with her to the final consultation on the 8th. Pray for Sharon that her cancer has not returned. Our family really needs a break from health care crisis' right now. She did read us the results of her MRI and it sounds like their is presence of some damage related I think to her Parkinson's but we will find out for sure not this week but next. Hopefully the answer will just require a change to her Parkinson's medication.
Thanks everyone for your concern and prayers, we always appreciate your support.
Someone decided to trash the front of our home with eggs, cottage cheese, crackers, maple syrup, ketchup, you name it. It was an awful mess. Well, two hours of cleaning, phone calls to the police and local security that patrols our HOA we are finally wrapping things up. We don't even know any teenagers well enough to know who would have done this. It is pretty upsetting as we missed our play group, had to manage the school district vision specialist visiting in the middle of all of this plus figure out (thank goodness Grandpa is here) how to clean it all up before the ants settled in.
*Sigh*
One of these days luck will call us a friend and we'll stop having so many surprises. Perhaps I am just feeling a bit frustrated this morning. This afternoon can always be better. =)
George from the school district brought over a new, fun reflective toy for Jonah. I am planning to place it in his little room. He loves it. We also received a stander for Jonah yesterday. Finally!!! He actually stayed in it for about 20 minutes while Grandpa held his lap top so he could play before he started fussing, not bad for his first time! Hopefully we can get some good use out of this.
I have a cute video of Noah to post. He LOVES music (a true musician in the making) and will dance to any music, anywhere. He was both dancing and squealing through the music at church on Sunday. We are still working on what it means to be reverent at church, that may take some time!
Jonah is doing well, he is all smiles and cuddles as usual.
We found an incredible Web site for a child that has Cerebral Palsy (thanks Amanda). I don't think being a twin mom would allow me enough time to be as intensive as they have been but at least I can pull ideas from what they have learned. They are also fellow NAPA clients so I plan to email them about their experience with the program there. It is pretty amazing what they have done:
http://www.prayfornathan.org/blog/?page_id=327
I love to be associated with parents who pray, work hard and do all they can for their children while always believing in their potential. These babies come to us for a reason and while many people do not support or do not understand we gain testimonies of why they are with us. Just Sunday I was feeling frustrated at some of the stares our Jonah receives at church, I should not let little things get me so but I never understand when adults stare without shame at another person because of a disability. It just never ceases to amaze me. But I am learning. I can say that younger children are curious and that is why they look but adults should have enough life experience to know that they don't stare, gawk, or treat differently those with disabilities. After all, we as Christians all over the world believe that Christ loved everyone, lame or leper without reproach or judgement. That is our ultimate goal, is it not? I suppose I am once again learning patience and tolerance for those who do not understand.
I will have to post that video of Noah soon. Thanks everyone for your concern about my mother. She fell again last week. Shane and I ordered her the Life Line system so she can wear this at home and if she falls and is not able to get up she simply presses a button and is instantly connected with those who can help her and get her 911. To make matters worse her oncologist met with her last week and felt that her cancer may have returned. The doctor ordered an MRI as well as a Pet Scan. My dad and I are flying up this coming Sunday to be with her the week of the 6th so we can go with her to the final consultation on the 8th. Pray for Sharon that her cancer has not returned. Our family really needs a break from health care crisis' right now. She did read us the results of her MRI and it sounds like their is presence of some damage related I think to her Parkinson's but we will find out for sure not this week but next. Hopefully the answer will just require a change to her Parkinson's medication.
Thanks everyone for your concern and prayers, we always appreciate your support.
Friday, June 26, 2009
Ok, so I am so excited for my upcoming Harry Potter Party. I plan to make some festive, HP dishes. Please take a vote from the poll above and let me know what you think would be tasty and fun to eat at my upcoming event.
Also, anyone have any other great recipe ideas?
Yeah for Harry Potter! We just saw Transformers tonight and the preview for HP looked so good! (Transformers was ok, I am too conservative...there was way too much unnecessary stuff in the movie for my taste but the special effects were cool).
Also, anyone have any other great recipe ideas?
Yeah for Harry Potter! We just saw Transformers tonight and the preview for HP looked so good! (Transformers was ok, I am too conservative...there was way too much unnecessary stuff in the movie for my taste but the special effects were cool).
Thursday, June 25, 2009
After two days of round trip, all day driving we have most of our specialists visit over for the boys. We still have neurosurgery next Wednesday for Jonah and then we will be done for a few months (although we do have the UCLA visit on the 29th of July). Talk about exhausting. It just continues to get harder as the boys get older. Noah absolutely cannot sit still to save his life. I swear he almost tore the GI Clinic office apart. He was pulling apart the sanitary paper on the patient table, trying to pull the scopes off the wall and attempting to dismantle the toy they had nailed securely (thank goodness) near the patient table. Of course when Mom says "No, you can't get down because this floor is not clean like home..." this results in screaming and protesting which includes a lot of back arching and every contortion imaginable to try and escape Mom.
*Sigh*
Jonah had to get in the action too at the GI Clinic. He was talking as loudly as he could, at the top of his lungs and the doctor really got a kick out of it. She said more then once, "My oh my, you are the one I keep hearing...huh?"
Boy was Mom grateful for Grandpa today.
Good news first. Dr. Kelly (Jonah's eye specialist) yesterday mentioned that Jonah looked really great, both developmentally and physically from the last time she saw him (she was surprised at how much he had grown and happy about his progress with head control). She did not change anything with his eye glasses. Pulmonology did not have much to say for Noah other then he looked good, was gaining weight and still not off oxygen so let's try and see where he is at in two months. The specialist did reduce his diuretics to 1x day because his lungs sounded so clear today. The GI Clinic was ecstatic about the boys weight gain. Noah is 21 pounds, 30 1/4 inches and Jonah is 22 pounds and 31 inches. Not bad!!! I was so excited about Noah finally being at 21 pounds. I am shooting for 25 by their second birthday for both.
Now, the "other" news. Dr. Kelly did mention Jonah might be having issues with vertical palsy and that she wanted to see him in three months. She talked about maybe needing to order another MRI and that if he did show signs of vertical palsy she would need to, of course what else, do surgery.The GI Clinic did talk to us in length about the boys' continued issues with vomiting. By now, both should be improving and they are not. We did talk fundoplication today. I repeatedly mentioned that I would not allow for my boys to be given any type of feeding tube related to a fundoplication procedure. The specialist we spoke with said in the case of Jonah he is gaining weight and eating and would not need the feeding tube plus the fundoplication surgery they would do would merely tighten the esophagus enough to prevent constant vomiting. She said in cases of illness he could still vomit and could continue to eat. Because Noah's GED (gastric emptying delay) is SO severe she said it may be necessary to talk to a pediatric surgeon about a pyloroplasty. Pyloroplasty is a surgical procedure in which the pylorus valve at the lower portion of the stomach is cut and resutured, relaxing and widening its muscular opening (pyloric sphincter) into the duodenum (first part of the small intestine). She said it is very possible that Noah's problem may not be reflux but an issue with GED. So we are going to speak with the pediatric surgeons at the hospital and talk about options. I am NEVER a fan of surgery but our lives are being controlled in a horrible way by the amount of vomiting these boys do. It is so exhausting and we have fought and fought and even maxed out medications to try and stop things. I have lost sanity on several occassions (thank goodness for a supportive family, including my amazing husband) and I think we may be at the point where "discussing options" may not be out of the question.
So that is the latest here at the Hanna home.
We are finally back at home. The boys are asleep (I think we are finally reaching a sleep pattern with Noah! Hurrah!) and I am exhausted. I am glad tomorrow is Friday.
TGIF!
*Sigh*
Jonah had to get in the action too at the GI Clinic. He was talking as loudly as he could, at the top of his lungs and the doctor really got a kick out of it. She said more then once, "My oh my, you are the one I keep hearing...huh?"
Boy was Mom grateful for Grandpa today.
Good news first. Dr. Kelly (Jonah's eye specialist) yesterday mentioned that Jonah looked really great, both developmentally and physically from the last time she saw him (she was surprised at how much he had grown and happy about his progress with head control). She did not change anything with his eye glasses. Pulmonology did not have much to say for Noah other then he looked good, was gaining weight and still not off oxygen so let's try and see where he is at in two months. The specialist did reduce his diuretics to 1x day because his lungs sounded so clear today. The GI Clinic was ecstatic about the boys weight gain. Noah is 21 pounds, 30 1/4 inches and Jonah is 22 pounds and 31 inches. Not bad!!! I was so excited about Noah finally being at 21 pounds. I am shooting for 25 by their second birthday for both.
Now, the "other" news. Dr. Kelly did mention Jonah might be having issues with vertical palsy and that she wanted to see him in three months. She talked about maybe needing to order another MRI and that if he did show signs of vertical palsy she would need to, of course what else, do surgery.The GI Clinic did talk to us in length about the boys' continued issues with vomiting. By now, both should be improving and they are not. We did talk fundoplication today. I repeatedly mentioned that I would not allow for my boys to be given any type of feeding tube related to a fundoplication procedure. The specialist we spoke with said in the case of Jonah he is gaining weight and eating and would not need the feeding tube plus the fundoplication surgery they would do would merely tighten the esophagus enough to prevent constant vomiting. She said in cases of illness he could still vomit and could continue to eat. Because Noah's GED (gastric emptying delay) is SO severe she said it may be necessary to talk to a pediatric surgeon about a pyloroplasty. Pyloroplasty is a surgical procedure in which the pylorus valve at the lower portion of the stomach is cut and resutured, relaxing and widening its muscular opening (pyloric sphincter) into the duodenum (first part of the small intestine). She said it is very possible that Noah's problem may not be reflux but an issue with GED. So we are going to speak with the pediatric surgeons at the hospital and talk about options. I am NEVER a fan of surgery but our lives are being controlled in a horrible way by the amount of vomiting these boys do. It is so exhausting and we have fought and fought and even maxed out medications to try and stop things. I have lost sanity on several occassions (thank goodness for a supportive family, including my amazing husband) and I think we may be at the point where "discussing options" may not be out of the question.
So that is the latest here at the Hanna home.
We are finally back at home. The boys are asleep (I think we are finally reaching a sleep pattern with Noah! Hurrah!) and I am exhausted. I am glad tomorrow is Friday.
TGIF!
Jonah enjoying his light box and toys in his new seater (all on loan from Blind Babies). The seat is really nice, Jonah still needs to grow in to it a bit but that means more use is ahead! These are GREAT additions and we are so grateful to Blind Babies!!
Also, had to include a cute pic of Grandpa giving Jonah a "raspberry." These boys are soaking up all the extra attention now that four hands are on deck during the day.
Also, had to include a cute pic of Grandpa giving Jonah a "raspberry." These boys are soaking up all the extra attention now that four hands are on deck during the day.
Baby Bird Adventures
Last night Shane came home to find a poor, helpless fledgling on our porch. His nest was up so high (on our roof) that we could not place him back. I took him inside and we called Shane's coworker who saves animals. She recommended a liquid baby bird food you can buy at Petco. We tried calling the SBCA and local aviaries but everyone was closed. So I played Momma Bird last night until this morning when Shane packed him up and took him to work to give to this coworker who said she would take him and try to feed him until he was able to leave on his own.
Last night Shane came home to find a poor, helpless fledgling on our porch. His nest was up so high (on our roof) that we could not place him back. I took him inside and we called Shane's coworker who saves animals. She recommended a liquid baby bird food you can buy at Petco. We tried calling the SBCA and local aviaries but everyone was closed. So I played Momma Bird last night until this morning when Shane packed him up and took him to work to give to this coworker who said she would take him and try to feed him until he was able to leave on his own.
Tuesday, June 23, 2009
I hope my good and dear friend, Amanda L., will not mind if I borrow this well written explanation of Cerebral Palsy from her blog. I felt it expressed just exactly what CP is all about.
(Cerebral Palsy) is a catch-all term that is used when someone has a brain injury that is static (the damage is done and not getting worse) and affects muscle control. CP produces a broad spectrum of results – from people who might be a bit clumsy when they walk to people unable to control their bodies at all. Since it is a non-progressive disorder, you have what you have and just learn to work around it. There are no known cures but different therapies can help a lot. CP has to do with physical skills, not cognitive ability. For those of you who want to learn more about CP, here’s a useful link: http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.html
Well, it is official. Jonah received his Cerebral Palsy diagnosis from Dr. Ho today.
Never mind that I had to be the one to push for this so we could move forward in getting Jonah home equipment through the school district. Never mind that I had to call the doctor's office and ask for an appointment so that the doctor could update his patient file and make the official diagnosis. Crazy!!!
What makes it worse is that Dr. Ho came in, checked out the boys, said they looked good and were ok for shots then turned around to the nurse and muttered something under his breath and all I heard was "CP." The nurse said, "she may need a letter for that." At which point I had to intervene and say, "Yes, I need to talk to whomever will be dealing with drafting a letter because we are trying to get Jonah equipment through the school." Then Dr. Ho basically excused himself and left the room!!! Without ONE WORD! WHAT? How do you hand out such a serious diagnosis and not spend time with the parents talking about what is going on, the future, options, etc.?
I am so furious that once the dust settles with this letter I am switching to Dr. Pardo (his partner). Yes, she is not board certified in neonatology BUT she always spends time with us, listening to our worries, etc. She has excellent experience (most of which in Orange County) and is very intelligent. Yes, she is opinionated so some moms do not like that but I like that she is smart and quick to suggest options. So I think once things have settled we will be switching.
*Sigh*
I can't wait until we move to an area that has better pediatric doctors AND a pediatric hospital!!! Imagine that!
Today was busy. This morning Jonah had therapy, we came home to weed a bit while it was still cool and then played with the boys in their kiddie pool. After, we got Sonic treats for lunch. Freddie from the Regional Center met with us to sign the boys bi-annual paperwork for their early start programs and then we were off to Dr. Ho's. The day went quickly which was really nice.
Tomorrow we are on the road at 8:00 AM. We have Dr. Kelly at 10:00 AM and then we go to the hospital to get Jonah's light box. On the way home we drop by Christi's home (Blind Babies) to pick up attachments for the light box, a loaner Wingbo and a nice, new seat for Jonah. Good thing we are taking our Sequoia!! We will need the room.
So that is where we are at. It does feel strange to officially have the diagnosis but in the same breath we have been preparing ourselves for months for this day. It does not mean that we give up on Jonah or his potential. He has SO much potential and we will work with him to help him achieve it!!!
NAPA called today to say that Anthem Blue Cross does not currently cover their Neurosuit program (of course, we knew this). They did mention a couple of grant Web sites that they said I should watch to see if any grants become available in Kern County. So we are back to considering January 2010.
That is the latest...hope everyone is well and healthy!
Never mind that I had to be the one to push for this so we could move forward in getting Jonah home equipment through the school district. Never mind that I had to call the doctor's office and ask for an appointment so that the doctor could update his patient file and make the official diagnosis. Crazy!!!
What makes it worse is that Dr. Ho came in, checked out the boys, said they looked good and were ok for shots then turned around to the nurse and muttered something under his breath and all I heard was "CP." The nurse said, "she may need a letter for that." At which point I had to intervene and say, "Yes, I need to talk to whomever will be dealing with drafting a letter because we are trying to get Jonah equipment through the school." Then Dr. Ho basically excused himself and left the room!!! Without ONE WORD! WHAT? How do you hand out such a serious diagnosis and not spend time with the parents talking about what is going on, the future, options, etc.?
I am so furious that once the dust settles with this letter I am switching to Dr. Pardo (his partner). Yes, she is not board certified in neonatology BUT she always spends time with us, listening to our worries, etc. She has excellent experience (most of which in Orange County) and is very intelligent. Yes, she is opinionated so some moms do not like that but I like that she is smart and quick to suggest options. So I think once things have settled we will be switching.
*Sigh*
I can't wait until we move to an area that has better pediatric doctors AND a pediatric hospital!!! Imagine that!
Today was busy. This morning Jonah had therapy, we came home to weed a bit while it was still cool and then played with the boys in their kiddie pool. After, we got Sonic treats for lunch. Freddie from the Regional Center met with us to sign the boys bi-annual paperwork for their early start programs and then we were off to Dr. Ho's. The day went quickly which was really nice.
Tomorrow we are on the road at 8:00 AM. We have Dr. Kelly at 10:00 AM and then we go to the hospital to get Jonah's light box. On the way home we drop by Christi's home (Blind Babies) to pick up attachments for the light box, a loaner Wingbo and a nice, new seat for Jonah. Good thing we are taking our Sequoia!! We will need the room.
So that is where we are at. It does feel strange to officially have the diagnosis but in the same breath we have been preparing ourselves for months for this day. It does not mean that we give up on Jonah or his potential. He has SO much potential and we will work with him to help him achieve it!!!
NAPA called today to say that Anthem Blue Cross does not currently cover their Neurosuit program (of course, we knew this). They did mention a couple of grant Web sites that they said I should watch to see if any grants become available in Kern County. So we are back to considering January 2010.
That is the latest...hope everyone is well and healthy!
Monday, June 22, 2009
Saturday went well.
It was a very busy day. We first went to NAPA to check out their open house. We made it late but we did get there and met with their head therapist who assessed Jonah and talked to us about the neurosuit. She said that there were a couple of things that encouraged her about Jonah. She said she really thought he eventually would have head control and that he just needed time to continue to develop it (still not perfect but getting better every day). She also said that his left hand which has the most spasticity then any other part of his body seemed to open up and respond if stretched well and stimulated and she said because of this she saw that with the right therapy he could overcome the challenges he faces with that particular arm.
She talked to us about the neurosuit. We asked for more specific research and she said she was aware of a mid-west Easter Seals group who recently published information on the success rate of the neurosuit used with children who have CP. She said she would try and locate this for us and email it to us. We asked about the long intervals of therapy and if it was exhausting for children as young as Jonah. She said they actually work with much younger children and always try to alter the sessions to the child's tolerance. She said that in the several years of all types of therapy that she had done, the neurosuit was the most successful in helping children. She was a huge advocate of its' use and recommended we seriously consider it. She was intelligent and confident and I was impressed by her. Shane, too, was more open about the idea after we left. We figure if insurance refuses to pay for the treatment we will wait until January 2010 so we can use part of Shane's company bonus to pay for the three week treatment. We still have heart that stem cell treatments will soon become available for children like Jonah and I will continue to call Duke University every few months to see if we yet qualify for a treatment program.
After, we went to Burbank and picked up Grandpa. Los Angeles was actually very cool (low 70's) so it was perfect for the zoo. However, they were having a huge gala that night so they closed the zoo early and we only had a couple of hours to see the animals. We still had fun and enjoyed the company of Heather Keller, the NICU nurse from CHLA that worked with both boys. It was so good to see her and her family!
After, we drove to Claim Jumpers for yummy dinner and home. We were all exhausted by the time we got home but it was a good day.
Father's Day was wonderful. Shane got lots of daddy time. I made both he and Grandpa breakfast as well as BBQ'd in the afternoon. Church was nice and Grandpa went to nursery with the boys so Shane and I could be in Sunday School together.
Today we went to OT and just as we arrived our therapist called in sick. We decided to wait for an opening and Jonah was seen by a different therapist. Noah had to skip out because they could not work in both boys. I spoke in depth with Blind Babies last week about ways to modify some of Jonah's OT goals. The good news is the bells I sewed to Jonah's socks to help him reach and pull of his socks were a hit! He giggled and loved the sounds they made and the shiny bells caught his attention and he indeed reached for them and with some prompting started to understand he needed to pull them off. Yeah! I am excited for the light box this week. Wednesday we go to Dr. Kelly (Jonah's eye specialist) and then to the hospital to pick up our light box and on the way home we go to Visalia to pick up attachments for the light box, mirrors, a Wingbo on loan until we get our own (we finally ordered a Wingbo but it is on back order for a month) and a really nice seat for Jonah. We are so blessed to have Blind Babies working with us, even if long distance is involved and we are not getting a constant therapy session. There are still options I am pursuing with this.
After therapy we raced home to change in to our swim suits. I made a fruit salad and we went to Tracy's pool. We had our small play group there. Noah took to the pool like a fish in water. I definitely plan to enroll him in swimming lessons in another year or two. Jonah, on the other hand, did not like the cool water at all. Tomorrow we will go later to a church play group (after the older, noisier kids leave) at the same pool and I am going to try and gradually adjust Jonah to the pool. Noah could not get enough!!! He played for a couple of hours and then came home and crashed out for a nice nap.
Tonight, Grandpa and I finally planted our pumpkin patch and we were able to put our sign up. It will be fun to watch them grow and in the fall I plan to have a fun harvesting play date with our play group so every child can pick a pumpkin for Halloween. It will be fun!
All in all it was a busy, wonderful day.
Tomorrow will be busy too. We have Kern Regional coming in the afternoon for our six month review. We are working on getting Jonah a stander to start using at home to really start working out his weight bearing with his legs. Our Richardson Center infant specialist and I brain stormed about the best way to get the paperwork done so we can get a stander here at home. Finally, we figured the quickest way would be to get Jonah's pediatrician to fill out a change of diagnosis and officially diagnosis Jonah with Cerebral Palsy. We have our July 29th appt with UCLA and their center for CP. We know the diagnosis is coming so this is not something new but in a way strange that we are discussing the diagnosis so matter of factly. Tomorrow I have to call Dr. Ho's office and get them going on paperwork so that we can hopefully get this stander in the next couple of weeks. My friend and her son Duncan have seen amazing results from the use of the stander; it really has strengthened his legs in a remarkable way.
We are also looking at Theratogs. Blind Babies mentioned it to me as an option last week when I asked about the neurosuit. I am looking in to it and plan to push it with Jonah's main therapist once she returns from surgery. It is interesting that when I found out about the Theratogs I also received an email from my friend Amanda (Duncan's mom) saying they were looking at using them for Duncan. I love to hear others using similar methods as it encourages me that it is a good choice, especially coming from a source like Amanda. She is a diligent, loving and educated mother who is a constant in the life of her son.
So this is where we are at. Busy, busy. Always busy! But that is so great. I so prefer to have projects, plans and goals to move us forward. Hope is a powerful motivator.
I hope you will enjoy the darling photos below. God bless you all.
It was a very busy day. We first went to NAPA to check out their open house. We made it late but we did get there and met with their head therapist who assessed Jonah and talked to us about the neurosuit. She said that there were a couple of things that encouraged her about Jonah. She said she really thought he eventually would have head control and that he just needed time to continue to develop it (still not perfect but getting better every day). She also said that his left hand which has the most spasticity then any other part of his body seemed to open up and respond if stretched well and stimulated and she said because of this she saw that with the right therapy he could overcome the challenges he faces with that particular arm.
She talked to us about the neurosuit. We asked for more specific research and she said she was aware of a mid-west Easter Seals group who recently published information on the success rate of the neurosuit used with children who have CP. She said she would try and locate this for us and email it to us. We asked about the long intervals of therapy and if it was exhausting for children as young as Jonah. She said they actually work with much younger children and always try to alter the sessions to the child's tolerance. She said that in the several years of all types of therapy that she had done, the neurosuit was the most successful in helping children. She was a huge advocate of its' use and recommended we seriously consider it. She was intelligent and confident and I was impressed by her. Shane, too, was more open about the idea after we left. We figure if insurance refuses to pay for the treatment we will wait until January 2010 so we can use part of Shane's company bonus to pay for the three week treatment. We still have heart that stem cell treatments will soon become available for children like Jonah and I will continue to call Duke University every few months to see if we yet qualify for a treatment program.
After, we went to Burbank and picked up Grandpa. Los Angeles was actually very cool (low 70's) so it was perfect for the zoo. However, they were having a huge gala that night so they closed the zoo early and we only had a couple of hours to see the animals. We still had fun and enjoyed the company of Heather Keller, the NICU nurse from CHLA that worked with both boys. It was so good to see her and her family!
After, we drove to Claim Jumpers for yummy dinner and home. We were all exhausted by the time we got home but it was a good day.
Father's Day was wonderful. Shane got lots of daddy time. I made both he and Grandpa breakfast as well as BBQ'd in the afternoon. Church was nice and Grandpa went to nursery with the boys so Shane and I could be in Sunday School together.
Today we went to OT and just as we arrived our therapist called in sick. We decided to wait for an opening and Jonah was seen by a different therapist. Noah had to skip out because they could not work in both boys. I spoke in depth with Blind Babies last week about ways to modify some of Jonah's OT goals. The good news is the bells I sewed to Jonah's socks to help him reach and pull of his socks were a hit! He giggled and loved the sounds they made and the shiny bells caught his attention and he indeed reached for them and with some prompting started to understand he needed to pull them off. Yeah! I am excited for the light box this week. Wednesday we go to Dr. Kelly (Jonah's eye specialist) and then to the hospital to pick up our light box and on the way home we go to Visalia to pick up attachments for the light box, mirrors, a Wingbo on loan until we get our own (we finally ordered a Wingbo but it is on back order for a month) and a really nice seat for Jonah. We are so blessed to have Blind Babies working with us, even if long distance is involved and we are not getting a constant therapy session. There are still options I am pursuing with this.
After therapy we raced home to change in to our swim suits. I made a fruit salad and we went to Tracy's pool. We had our small play group there. Noah took to the pool like a fish in water. I definitely plan to enroll him in swimming lessons in another year or two. Jonah, on the other hand, did not like the cool water at all. Tomorrow we will go later to a church play group (after the older, noisier kids leave) at the same pool and I am going to try and gradually adjust Jonah to the pool. Noah could not get enough!!! He played for a couple of hours and then came home and crashed out for a nice nap.
Tonight, Grandpa and I finally planted our pumpkin patch and we were able to put our sign up. It will be fun to watch them grow and in the fall I plan to have a fun harvesting play date with our play group so every child can pick a pumpkin for Halloween. It will be fun!
All in all it was a busy, wonderful day.
Tomorrow will be busy too. We have Kern Regional coming in the afternoon for our six month review. We are working on getting Jonah a stander to start using at home to really start working out his weight bearing with his legs. Our Richardson Center infant specialist and I brain stormed about the best way to get the paperwork done so we can get a stander here at home. Finally, we figured the quickest way would be to get Jonah's pediatrician to fill out a change of diagnosis and officially diagnosis Jonah with Cerebral Palsy. We have our July 29th appt with UCLA and their center for CP. We know the diagnosis is coming so this is not something new but in a way strange that we are discussing the diagnosis so matter of factly. Tomorrow I have to call Dr. Ho's office and get them going on paperwork so that we can hopefully get this stander in the next couple of weeks. My friend and her son Duncan have seen amazing results from the use of the stander; it really has strengthened his legs in a remarkable way.
We are also looking at Theratogs. Blind Babies mentioned it to me as an option last week when I asked about the neurosuit. I am looking in to it and plan to push it with Jonah's main therapist once she returns from surgery. It is interesting that when I found out about the Theratogs I also received an email from my friend Amanda (Duncan's mom) saying they were looking at using them for Duncan. I love to hear others using similar methods as it encourages me that it is a good choice, especially coming from a source like Amanda. She is a diligent, loving and educated mother who is a constant in the life of her son.
So this is where we are at. Busy, busy. Always busy! But that is so great. I so prefer to have projects, plans and goals to move us forward. Hope is a powerful motivator.
I hope you will enjoy the darling photos below. God bless you all.
Saturday, June 20, 2009
We did not make story time Wednesday as poor Jonah was having an awful day with his cold. Both boys are still sneezing and suffering from congestion. This month has had a lot of cold and hot spells and almost everyone I know is sick. It does not help that Bakersfield has such poor air quality. I, myself, feel like my allergy meds have reached their limits. I have been suffering from congestion, runny nose, etc. for over a month. It might be time to hit the allergist again.
The rest of the week went quickly. The boys mostly stayed at home with their colds, etc. They seem to be doing a bit better today so that is good. At least we have avoided the hospitals so far!
Today we are off to LA and have a packed schedule. We first go to NAPA for their open house. I hope we get a chance to see the neurosuit and maybe even see a child working out in one. I am planning to ask for a list of parents that would be willing to talk to me about their experiences with the therapy. Even if we feel strongly it is a good possibility we will not have our ducks in a row until next January to go forward with a three week session.
After NAPA we are off to Burbank airport to get Grandpa! YEAH! We are so excited to see him. Then we go to the LA Zoo and I am so excited because Heather Keller (CHLA nurse who primaried both boys) called yesterday and wanted to meet us at the zoo so we can meet her newborn and she can see the boys. She is moving back to NY in the fall to be closer to her side of the family and she really wants a chance to see the boys. It will be neat to see her. She is such a sweetheart, we absolutely loved her as a nurse. She gave these boys so much love, especially Mr. Jonah. She started working with Jonah and then took on Noah. She was so good to these boys and just spoiled them.
I am excited for the zoo. Hopefully the boys will enjoy themselves. I am glad to be out of Bakersfield as it is going to be hot, hot today!
Blind Babies finally got with me earlier this week and we spent two hours on the phone. Our contact is giving us a lot of good equipment to use at home with Jonah. She is loaning us a light box, several toys/attachments used with the light box, a special seat that is practically new (she said another family with a special needs child donated it to her) and a Wingbo on loan until we finally get our own. We ordered a Wingbo this week but they are on back order. She gave me lots of great exercises to try with Jonah and also suggestions as to how to modify some of his OT goals. Our Terrio Therapy OT that works with Jonah on Tuesday is not always good about modifying her goals for Jonah based on his limited vision so I have the task of making sure he can understand the concept of what she is asking him to do.
Well, we are getting ready to leave so I must go. We will have fun photos to post later!
Michelle
The rest of the week went quickly. The boys mostly stayed at home with their colds, etc. They seem to be doing a bit better today so that is good. At least we have avoided the hospitals so far!
Today we are off to LA and have a packed schedule. We first go to NAPA for their open house. I hope we get a chance to see the neurosuit and maybe even see a child working out in one. I am planning to ask for a list of parents that would be willing to talk to me about their experiences with the therapy. Even if we feel strongly it is a good possibility we will not have our ducks in a row until next January to go forward with a three week session.
After NAPA we are off to Burbank airport to get Grandpa! YEAH! We are so excited to see him. Then we go to the LA Zoo and I am so excited because Heather Keller (CHLA nurse who primaried both boys) called yesterday and wanted to meet us at the zoo so we can meet her newborn and she can see the boys. She is moving back to NY in the fall to be closer to her side of the family and she really wants a chance to see the boys. It will be neat to see her. She is such a sweetheart, we absolutely loved her as a nurse. She gave these boys so much love, especially Mr. Jonah. She started working with Jonah and then took on Noah. She was so good to these boys and just spoiled them.
I am excited for the zoo. Hopefully the boys will enjoy themselves. I am glad to be out of Bakersfield as it is going to be hot, hot today!
Blind Babies finally got with me earlier this week and we spent two hours on the phone. Our contact is giving us a lot of good equipment to use at home with Jonah. She is loaning us a light box, several toys/attachments used with the light box, a special seat that is practically new (she said another family with a special needs child donated it to her) and a Wingbo on loan until we finally get our own. We ordered a Wingbo this week but they are on back order. She gave me lots of great exercises to try with Jonah and also suggestions as to how to modify some of his OT goals. Our Terrio Therapy OT that works with Jonah on Tuesday is not always good about modifying her goals for Jonah based on his limited vision so I have the task of making sure he can understand the concept of what she is asking him to do.
Well, we are getting ready to leave so I must go. We will have fun photos to post later!
Michelle
Tuesday, June 16, 2009
This week is off to a good start. We've had two busy days which Mom likes! Yesterday we started with occupational therapy for both boys and then joined our small play group which included lots of walking for the Moms (yeah!). We also grabbed salads for lunch and I got to catch up with a great friend who I have not seen in some time. She has known these boys since birth. She visited them in the NICU twice and her husband assisted in a special priesthood blessing before Jonah was transferred to Madera at two weeks old. They indeed are special people to us.
After we came home to do a couple of things before taking the boys to their pediatrician to make sure their runny noses and sneezing were nothing more then colds/allergies. Thank goodness that was indeed the only problem. By the time this all was over it was the end of the day and it was time for dad to come home. We only had a couple of vomit spells from Noah which makes for a good day all in all! No throwing up during our morning play group so Mom was grateful!
Today started off with therapy (both PT/OT) for Jonah and then we picked up a couple of dozen doughnuts to treat the church play group. We are meeting at Tracy's pool this month and the boys have really been too sick to go until today. I didn't want to manage both in the pool with all the bigger kids so we just went to see how they handled being around everyone. They actually did fairly well. Noah was a little grumpy but all in all they did well. Noah even was agreeable enough to wade his toes in the pool and feel the cool water. It has been in the 80's so in the morning pool water is much cooler and with the sniffles I figured I had better play it safe. Grandpa will be in town next week and we can all go to the pool which will be nice!!
This afternoon Noah took a nap, Jonah played and was worked out in tummy time, his Johnny Jumper and enjoyed his little house and other toys. He is getting stronger which is exciting to see. We still have so much to accomplish but his trunk and neck/head strength are slowly coming along. We have to celebrate the small steps of progress in this home. Plus, he has the most adorable, sweet personality. He always includes himself in all of mom's conversations (very much our chatterbox) and is so expressive. His personality has really blossomed over the past couple of months. He is more tolerant of new environments and other children/noises which is a huge blessing.
We are still researching the neurosuit therapy. We have found case studies that show high rates of success with the intensive therapy model but of course Shane wants more hard core type research. The therapy is maybe a decade old and only offered in a certain amount of facilities nationwide so I am not sure we will find this type of specific research. For now, the therapists I have spoken with say they have only heard positive feedback in regards to the therapy. We plan to attend a free tour/orientation on Saturday in Los Angeles before picking up Grandpa at the Burbank airport. They just happen to be having a tour Saturday so we are going to visit the facility and talk about what the program is all about. It will be interesting to see the neurosuit itself. We do not plan to start any therapy until winter time, that way Jonah has time to mature a bit and we can prepare ourselves financially. We still have a lot of praying and researching to do but again, most of what we have read from various resources has been very positive.
I am trying hard to keep this week packed so that the days go by quickly and we are able to see Grandpa come Saturday. I am also excited because we plan to take the boys to the LA zoo Saturday afternoon after picking up Grandpa. Hopefully their petting zoo will be open so that Jonah can get the most out of the experience.
Tomorrow we do not have therapy but I am trying to decide if I want to go to the local bookstore's story time or go a music play group that is hosted by our old church ward in the southwest. I like that most everyone there will know us well and will be good about making sure we are comfortable. You can't pass that up so we will see. I am thinking after a nice walk in the park would be good for both boys and Mom.
Well, Jonah is done being in his Johnny Jumper and he is letting me know loudly. Noah has managed to drag out all of Jonah's toys from his little room so I better go save them before they are lost under the sofa.
Thanks everyone for reading our blog and supporting our family. We love you all!
After we came home to do a couple of things before taking the boys to their pediatrician to make sure their runny noses and sneezing were nothing more then colds/allergies. Thank goodness that was indeed the only problem. By the time this all was over it was the end of the day and it was time for dad to come home. We only had a couple of vomit spells from Noah which makes for a good day all in all! No throwing up during our morning play group so Mom was grateful!
Today started off with therapy (both PT/OT) for Jonah and then we picked up a couple of dozen doughnuts to treat the church play group. We are meeting at Tracy's pool this month and the boys have really been too sick to go until today. I didn't want to manage both in the pool with all the bigger kids so we just went to see how they handled being around everyone. They actually did fairly well. Noah was a little grumpy but all in all they did well. Noah even was agreeable enough to wade his toes in the pool and feel the cool water. It has been in the 80's so in the morning pool water is much cooler and with the sniffles I figured I had better play it safe. Grandpa will be in town next week and we can all go to the pool which will be nice!!
This afternoon Noah took a nap, Jonah played and was worked out in tummy time, his Johnny Jumper and enjoyed his little house and other toys. He is getting stronger which is exciting to see. We still have so much to accomplish but his trunk and neck/head strength are slowly coming along. We have to celebrate the small steps of progress in this home. Plus, he has the most adorable, sweet personality. He always includes himself in all of mom's conversations (very much our chatterbox) and is so expressive. His personality has really blossomed over the past couple of months. He is more tolerant of new environments and other children/noises which is a huge blessing.
We are still researching the neurosuit therapy. We have found case studies that show high rates of success with the intensive therapy model but of course Shane wants more hard core type research. The therapy is maybe a decade old and only offered in a certain amount of facilities nationwide so I am not sure we will find this type of specific research. For now, the therapists I have spoken with say they have only heard positive feedback in regards to the therapy. We plan to attend a free tour/orientation on Saturday in Los Angeles before picking up Grandpa at the Burbank airport. They just happen to be having a tour Saturday so we are going to visit the facility and talk about what the program is all about. It will be interesting to see the neurosuit itself. We do not plan to start any therapy until winter time, that way Jonah has time to mature a bit and we can prepare ourselves financially. We still have a lot of praying and researching to do but again, most of what we have read from various resources has been very positive.
I am trying hard to keep this week packed so that the days go by quickly and we are able to see Grandpa come Saturday. I am also excited because we plan to take the boys to the LA zoo Saturday afternoon after picking up Grandpa. Hopefully their petting zoo will be open so that Jonah can get the most out of the experience.
Tomorrow we do not have therapy but I am trying to decide if I want to go to the local bookstore's story time or go a music play group that is hosted by our old church ward in the southwest. I like that most everyone there will know us well and will be good about making sure we are comfortable. You can't pass that up so we will see. I am thinking after a nice walk in the park would be good for both boys and Mom.
Well, Jonah is done being in his Johnny Jumper and he is letting me know loudly. Noah has managed to drag out all of Jonah's toys from his little room so I better go save them before they are lost under the sofa.
Thanks everyone for reading our blog and supporting our family. We love you all!
Saturday, June 13, 2009
Just a quick posting.
We heard from Blind Babies Friday. I have been trying to get Jonah a light box ever since we stopped working with Junior League. She said she did have one she could loan us. Yeah!! I read about a great idea to make transparencies out of Jonah's favorite stories and then read them to him with the light box so he can see the images. What a great idea! I am supposed to talk with my contact Monday about suggestions she has for Jonah. She sent me a short email last night, most things we are already doing which is both good and bad. Good because it is nice to know we are doing helpful things for Jonah but also frustrating because I want new ideas, new goals to help Jonah make progress. Maybe our conversation Monday will shed more light.
For now, we just have to do our best and move on with life. We will do all in our power and put the rest in God's hands. That is all we can do as parents. Some times I wish I had a crystal ball and I could just know that our future would work out and that these hardships would make sense to us in the end. I am sure down the road they will but often that does not help me with today. Thank goodness I have a knowledge of God and his love for my family. I am also grateful for the Plan of Salvation and the knowledge it gives me that every creature has a purpose here on earth, no matter their imperfections or challenges.
We heard from Blind Babies Friday. I have been trying to get Jonah a light box ever since we stopped working with Junior League. She said she did have one she could loan us. Yeah!! I read about a great idea to make transparencies out of Jonah's favorite stories and then read them to him with the light box so he can see the images. What a great idea! I am supposed to talk with my contact Monday about suggestions she has for Jonah. She sent me a short email last night, most things we are already doing which is both good and bad. Good because it is nice to know we are doing helpful things for Jonah but also frustrating because I want new ideas, new goals to help Jonah make progress. Maybe our conversation Monday will shed more light.
For now, we just have to do our best and move on with life. We will do all in our power and put the rest in God's hands. That is all we can do as parents. Some times I wish I had a crystal ball and I could just know that our future would work out and that these hardships would make sense to us in the end. I am sure down the road they will but often that does not help me with today. Thank goodness I have a knowledge of God and his love for my family. I am also grateful for the Plan of Salvation and the knowledge it gives me that every creature has a purpose here on earth, no matter their imperfections or challenges.
Wednesday, June 10, 2009
I love these adorable tags, "Future Missionary." Both boys proudly wear theirs to church some Sundays. Noah was out like a light when we got home so I didn't get a photo of him but I am sure one is coming! I really want him to have a photo like this to look back at one day when he does get his calling to serve a mission at the age of 19. Absolutely priceless. Both my boys will serve full time missions, whether it be in this life or the next. They will be great missionaries!
Look for more adorable future missionary photos to come!
I can't believe my own mission was over 10 years ago. It was by far the most spiritual experience I have had and I look forward to hopefully serving with Shane as a couple some day.
Look for more adorable future missionary photos to come!
I can't believe my own mission was over 10 years ago. It was by far the most spiritual experience I have had and I look forward to hopefully serving with Shane as a couple some day.
Anything for my lap top....
Thank goodness for this find by Grandma Hanna because this V-tech toy is by FAR Jonah's absolute favorite. It comes in handy when trying to motivate Jonah in OT/PT and at home. I am attempting to get him on his feet more and start learning about balance and his body. So we've incorporated a little dark room to maximize his vision where we can prop his favorite toy within reach just to get him motivated enough to move himself around and use that trunk!
Thank goodness for this find by Grandma Hanna because this V-tech toy is by FAR Jonah's absolute favorite. It comes in handy when trying to motivate Jonah in OT/PT and at home. I am attempting to get him on his feet more and start learning about balance and his body. So we've incorporated a little dark room to maximize his vision where we can prop his favorite toy within reach just to get him motivated enough to move himself around and use that trunk!
Tuesday, June 9, 2009
Everyone,
Terrio Therapy (the group that provides the boys' physical and occupational therapy here in town) runs a sports group for children with disabilities called League of Dreams. They periodically do fundraisers and this time of year they are going to sell fireworks to try and raise $$$ for future sports camps, clinics, etc. They accept every child and group them in to teams that coincide with their level of capability. This is obviously a cause close to my heart and I love their slogan, "Because Every Child Deserves a Chance to Play." I told their coordinator this morning I would help in any way possible to let others know about their fundraising efforts.
If you live in Bakersfield, Terrio Therapy Kids will be selling fireworks at the League of Dreams fireworks booth at 4200 California Avenue inside the Mervyn's shopping plaza. If your child goes to Terrio Therapy you can buy a script at the office and take it to the stand to redeem.
Let's help this good cause as they bring sports to every child, no matter their disability!
If you want to donate you can download a donation form and mail a check and/or money order. If you have questions and want to talk to the league coordinator call (661) 377-1700. For more donation information see the Web link below:
http://www.ourleagueofdreams.com/donate.htm
Terrio Therapy (the group that provides the boys' physical and occupational therapy here in town) runs a sports group for children with disabilities called League of Dreams. They periodically do fundraisers and this time of year they are going to sell fireworks to try and raise $$$ for future sports camps, clinics, etc. They accept every child and group them in to teams that coincide with their level of capability. This is obviously a cause close to my heart and I love their slogan, "Because Every Child Deserves a Chance to Play." I told their coordinator this morning I would help in any way possible to let others know about their fundraising efforts.
If you live in Bakersfield, Terrio Therapy Kids will be selling fireworks at the League of Dreams fireworks booth at 4200 California Avenue inside the Mervyn's shopping plaza. If your child goes to Terrio Therapy you can buy a script at the office and take it to the stand to redeem.
Let's help this good cause as they bring sports to every child, no matter their disability!
If you want to donate you can download a donation form and mail a check and/or money order. If you have questions and want to talk to the league coordinator call (661) 377-1700. For more donation information see the Web link below:
http://www.ourleagueofdreams.com/donate.htm
Just a quick posting. We remain busy here at the Hanna house. We worked a lot Saturday in the yard both weeding and planting a few more flowers out front and back. I am excited to plant a pumpkin patch in one of the flower beds we aren't using on the side of the house. It will be fun to grow the pumpkins for the fall so the boys have their own pumpkins to choose for Halloween. I also bought some sugar baby seeds and plan to plant those also.
Yesterday was a rough day. The boys were fussy and we had more then one episode of vomiting. I felt like all I did was run from one puddle of puke to the next. Good thing that when Dad got home he was kind enough to take on the boys so Mom could run some errands and feel like a part of humanity again. I made a fondant cake last night for Shane to take to work today. I also managed to finish some cute cookies for my cookie class tonight. I ran to Michaels this morning and chose a cute flower pot to fill with styrofoam so I can make my bouquet tonight.
Today seems to be off to a better start, maybe God felt Mom deserved a break. =)
I am yet to hear from Blind Babies. I just sent our contact a follow up email as I am sure her son has now graduated from high school and hopefully things are more settled. We have an appointment with Jonah's opthalmologist on the 24th so I suggested we also meet with Blind Babies to see if they have any new insight in to what Jonah is needing.
I had another conversation with Jonah's physical therapist about the neurosuit this morning and her intern for the summer was familiar with the Los Angeles group that does the therapy. Neurological and Physical Abilitation Center (NAPA) offers the neurosuit therapy. I have it in my plans to research their Web site this afternoon and see what options we might have for Jonah. Apparently they are located near the LAX airport. So we will see what they have that could benefit Jonah and then see when we could possibly work it in to the budget. It might have to wait for Shane's next company bonus as I know the therapy is alternative and not covered by insurance.
This week seems to be back on track with our normal schedule. I am grateful for this. We had PT/OT both yesterday and today. Tomorrow will be our first attempt at story time. Hopefully it will prove to be something both boys enjoy. My friend who goes did mention that it has started to be packed with the summer and school being out. We'll have to go early to get a spot close so that Jonah can hear well and also to the side for an easy escape should one of the boys get upset. Jonah has done well with music time in nursery and has handled all the crazy noise of nursery and church well so my assumption is that he will do well for story time. I can only cross my toes and fingers so much though but that is the hope!
Well, that is the latest. It is lunch time for the boys so I have to run. I'll keep you posted in regards to what we learn about NAPA.
Yesterday was a rough day. The boys were fussy and we had more then one episode of vomiting. I felt like all I did was run from one puddle of puke to the next. Good thing that when Dad got home he was kind enough to take on the boys so Mom could run some errands and feel like a part of humanity again. I made a fondant cake last night for Shane to take to work today. I also managed to finish some cute cookies for my cookie class tonight. I ran to Michaels this morning and chose a cute flower pot to fill with styrofoam so I can make my bouquet tonight.
Today seems to be off to a better start, maybe God felt Mom deserved a break. =)
I am yet to hear from Blind Babies. I just sent our contact a follow up email as I am sure her son has now graduated from high school and hopefully things are more settled. We have an appointment with Jonah's opthalmologist on the 24th so I suggested we also meet with Blind Babies to see if they have any new insight in to what Jonah is needing.
I had another conversation with Jonah's physical therapist about the neurosuit this morning and her intern for the summer was familiar with the Los Angeles group that does the therapy. Neurological and Physical Abilitation Center (NAPA) offers the neurosuit therapy. I have it in my plans to research their Web site this afternoon and see what options we might have for Jonah. Apparently they are located near the LAX airport. So we will see what they have that could benefit Jonah and then see when we could possibly work it in to the budget. It might have to wait for Shane's next company bonus as I know the therapy is alternative and not covered by insurance.
This week seems to be back on track with our normal schedule. I am grateful for this. We had PT/OT both yesterday and today. Tomorrow will be our first attempt at story time. Hopefully it will prove to be something both boys enjoy. My friend who goes did mention that it has started to be packed with the summer and school being out. We'll have to go early to get a spot close so that Jonah can hear well and also to the side for an easy escape should one of the boys get upset. Jonah has done well with music time in nursery and has handled all the crazy noise of nursery and church well so my assumption is that he will do well for story time. I can only cross my toes and fingers so much though but that is the hope!
Well, that is the latest. It is lunch time for the boys so I have to run. I'll keep you posted in regards to what we learn about NAPA.
Friday, June 5, 2009
One step closer!
Noah was pushing around our trash can (much to my dismay) when he got close to mommy he decided he'd had enough but the trash can wouldn't reach as far as mommy's legs. So, he took that one step all by himself to get to me.
Hip hip hooray! We are so close to walking, for us this is huge.
We're almost there!
Noah was pushing around our trash can (much to my dismay) when he got close to mommy he decided he'd had enough but the trash can wouldn't reach as far as mommy's legs. So, he took that one step all by himself to get to me.
Hip hip hooray! We are so close to walking, for us this is huge.
We're almost there!
Can I tell you how excited I am for July 15th? I LOVE Harry Potter. I feel a need to have a round of Scene It trivia before the big movie night.
We plan to invite everyone and anyone who is an HP fan to join us Friday the 17th to view the 7:00 show. Plan to meet us in line 45 minutes early at the Edwards Cinema. Wands at the ready! It is going to be a fun night. Bring HP treats to share!
(Ok, ok...I know this is over a month in advance. I can't help it! No worries, I'm sure I'll post a reminder closer to the movie date.)
We plan to invite everyone and anyone who is an HP fan to join us Friday the 17th to view the 7:00 show. Plan to meet us in line 45 minutes early at the Edwards Cinema. Wands at the ready! It is going to be a fun night. Bring HP treats to share!
(Ok, ok...I know this is over a month in advance. I can't help it! No worries, I'm sure I'll post a reminder closer to the movie date.)
Wednesday, June 3, 2009
It has been another long week. I must have overdone things this past Saturday as I woke up Sunday morning feeling awful. Shane felt a bit under the weather and Noah started up with a nasty runny nose and vomiting. I thought we would make church and was excited to see how the nursery enjoyed the new table cloth and bright floral pots I put in the windows but in the end we had to stay home.
My symptoms only continued to worsen so finally Monday I convinced my doctor to call me in an antibiotic. I must have something viral because I cannot even tell if the Z-Pac is doing any good at all. I still have a nasty cough and drainage. I have a bit more energy and thank goodness the horrible headaches are gone.
Noah and Jonah have been a bit more unsettled GI wise this week and Noah has both a runny nose with lots of sneezing so I think they have a version of what I am going through so we have missed another week of therapy.
I cannot wait to get back in to a normal routine. It is going to be so nice to be back to normal and get involved with our play groups, story time, etc.
We have an appointment scheduled for Jonah on the 29th of July with the UCLA Center for Cerebral Palsy. I am glad to have that taken care of. Jonah meets with all his specialists down in Madera end of June when Grandpa returns, including his eye specialist. I am excited to see her as it has been several months.
Nothing too new on the vision therapy front. I received an email from Blind Babies with a few simple suggestions and a handout but the specialist has a son graduating from high school so she said it may be a week before she could get back with a plan. Our good friend, Amanda Lawrence, also shared notes from a recent visit by their CVI specialist (thank you!) So at least I have some new material. I have been so sick I have not had a chance to review it but plan to here soon.
Well, I am off to run a couple of errands since I have a bit more energy tonight. I will post more soon.
My symptoms only continued to worsen so finally Monday I convinced my doctor to call me in an antibiotic. I must have something viral because I cannot even tell if the Z-Pac is doing any good at all. I still have a nasty cough and drainage. I have a bit more energy and thank goodness the horrible headaches are gone.
Noah and Jonah have been a bit more unsettled GI wise this week and Noah has both a runny nose with lots of sneezing so I think they have a version of what I am going through so we have missed another week of therapy.
I cannot wait to get back in to a normal routine. It is going to be so nice to be back to normal and get involved with our play groups, story time, etc.
We have an appointment scheduled for Jonah on the 29th of July with the UCLA Center for Cerebral Palsy. I am glad to have that taken care of. Jonah meets with all his specialists down in Madera end of June when Grandpa returns, including his eye specialist. I am excited to see her as it has been several months.
Nothing too new on the vision therapy front. I received an email from Blind Babies with a few simple suggestions and a handout but the specialist has a son graduating from high school so she said it may be a week before she could get back with a plan. Our good friend, Amanda Lawrence, also shared notes from a recent visit by their CVI specialist (thank you!) So at least I have some new material. I have been so sick I have not had a chance to review it but plan to here soon.
Well, I am off to run a couple of errands since I have a bit more energy tonight. I will post more soon.
Subscribe to:
Posts (Atom)